Equal Access, Equal Opportunity: 25th Anniversary of the Americans with Disabilities Act by Faircount Media Group

Equal Access, Equal Opportunity 2 5 t h A n n i v e r s a ry o f t h e A m e r i c a n s W i t h D i s a b i l i t i e s A c t

Ability meansâ&#x20AC;Ś

Access

Learning Growing

Opportunity

Progress

At AT&T, we believe in the ability of all people. Our dedication to accessibility is present in every product we make, in every service we offer, and in how we hire, develop and engage employees with disabilities. From billing in braille, to customized technologies, we create inclusive experiences for customers and employees so we can all progress, grow and achieve.

Staying connected has never been easier.

So much has been achieved since the passage of ADA. With every new innovation and product, LG continues to make life easier and more productive for people with disabilities. •

Triple-Tap Zoom Offering all of us just a little more zoom than your average Android, just triple-tap and get exactly what you need, as large as you want.

•

Hearing Aid Compatibility Rated for use with hearing aids, the G3 comes through loud and clear regardless of which service provider you have.

•

Knock Code/Knock On Gain quick, secure access to the home screen simply by tapping your personal pattern on the display.

With LG, it’s all possible.™

Equal Access, Equal Opportunity

Tom Olin Photography

2 5 t h A n n i v e r s a ry o f t h e A m e r i c a n s W i t h D i s a b i l i t i e s A c t

sprintrelay.com

federalrelay.us

Taylor Morris U.S. Navy Veteran

JOIN EZ-ACCESS® in supporting veterans and the Americans with Disabilities Act! The Americans with Disabilities Act supports the rights and opportunities of individuals with disabilities to live their lives fully and without compromise. The ADA guarantees that all Americans have access to all public places, as well as private places open to the public. At EZ-ACCESS we are dedicated to making that promise a reality.

EZ-ACCESS offers a full line of durable and dependable products that meet both shortand long-term accessibility needs. Our products include: • PATHWAY® Modular Access System • PASSPORT® Vertical Platform Lift • SUITCASE® Portable Folding Ramps • TRANSITIONS® Threshold Ramps and Mats • GATEWAY™ Solid Surface Portable Ramp

to find fast, affordable solutions to your commercial or residential accessibility needs.

customerservice@ezaccess.com • 1.800.451.1903 • www.ezaccess.com

As you may know, my lifeâ&#x20AC;Śmy ministry, has been dedicated to advancing efforts that improve the quality of life for Americans with disabilities and working to eliminate stigma that so often prevents individuals with disabilities from achieving competitive employment. As a former United States congressman from California, I distinguish the Americans with Disabilities Act, the most important piece of civil rights legislation since the Civil Rights Act of 1964, as the greatest accomplishment of my life. As we celebrate the 25th anniversary of the signing of the Americans with Disabilities Act, we remember that passage of the ADA began to open doors to provide respect and full participation for those of us with disabilities. We know that work gives focus and purpose to human lives. The asylums that isolated some people from a normal life gave way to a promise of equal participation with passage of the landmark Americans with Disabilities Act. Over the last 25 years, there has been a dramatic reduction in physical barriers, although the environment is not yet barrier-free. Accommodations have benefitted society beyond what could have been envisioned and accessibility is now a part of the architectural lexicon. While much progress has been made, we need to continue to work towards full participation in the area of employment. I will not rest until people with disabilities have equal access to freedom through competitive employment! I join you in celebrating the 25th anniversary of the ADA, and the promise that ensures men and women with disabilities have the same opportunity for independence, economic security, and personal dignity that their fellow citizens enjoy. We will continue to advocate for our rights until every American shares in the prosperity and justice on which our nation has been built.

Tony Coelho

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Shell Oil Company is an Affirmative Action, Equal Opportunity employer (M/F/D/V)

School of Biomedical Informatics

Lex Frieden, BS, MA, LLD Professor, Biomedical Informatics and Physical Medicine and Rehabilitation

September 12, 2014 Friends and Colleagues: During the past quarter century, the Americans with Disabilities Act (ADA) has changed the face of America and the lives of millions of Americans with disabilities. Our nation and our people are better off because of the ADA. Because I was active in the disability rights and independent living movements for more than a decade before the law was enacted, and because I had a formative role in the development of the legislation, I have often been asked if the ADA met my expectations. My answer is a resounding, “absolutely yes.” The ADA created a standard for nondiscrimination on the basis of disability: That was our primary objective. Before the ADA was passed, those of us with disabilities were truly second-class citizens. We did not effectively have the right to use the bathroom in public places, including government buildings—because those of us who use wheelchairs could not even get through the narrow bathroom doors, in most cases. We did not effectively have the right to serve on a jury, because we could not get into the jury box, or because necessary communications were not accessible to deaf people in some cases or to blind people in others. And our tax dollars paid for public sidewalks and public transportation that we could not use because they were not accessible. Since July 26, 1990, the physical, communications, and transportation environments in the United States have changed dramatically. Barriers to access are still evident, but usually they are the exception. And if they exist, they are probably representative of unintended noncompliance. Regardless of their cause, barrier-free access is now effectively a right, and legal action can be taken by responsible government agencies or by individuals to enforce rights of access. ADA was landmark legislation. It was, and still is, the most clear and compelling commitment to nondiscrimination and civil rights on the basis of disability ever made by a nation. We should all join in celebration of the Silver Anniversary of the ADA. We should acknowledge our progress; and we should recommit ourselves to fully implementing the ADA and to achieving our goals of independence, full participation and full inclusion of people with disabilities.

Sincerely yours,

Lex Frieden, Professor Director, Independent Living and ADA Programs ILRU at TIRR Memorial Hermann

EMPOWERING PEOPLE. ADVANCING ACCESS. Comcast and NBCUniversal salute the ADA. Twenty-five years ago, the Americans with Disabilities Act (ADA) pioneered a journey to equalize access. By eliminating barriers to access, the ADA humanized the civil rights of people with disabilities and became a pillar for diversity and inclusion.

usability testing...we measure our success by how effectively people with disabilities can engage with our products and entertainment attractions and how readily employees of all abilities can grow and contribute to the success of the company.

All of us at Comcast and NBCUniversal salute the ADA. Fully committed to doing our part, our commitment to diversity, inclusion and access for everyone is validated by our actions every day.

And we don’t go through the journey alone. Our company partners with The American Association of People with Disabilities, The Arc, Easter Seals, Paralyzed Veterans of America and USBLN, among others, to help further inform our business ventures and empower communities with media and technology resources to improve access for all. We proudly support the ADA Legacy Project and join in celebrating 25 years of bringing more American perspectives and needs to the forefront.

From our XFINITY® products and services to our Universal Parks and Resorts...from broadcasting the Paralympics to creating a support center for customers with disabilities… from launching MyAbilities Network, an employee resource group for people with varied abilities to establishing a dedicated Accessibility Lab for product creation and

Accessibility

Elizabeth Dole

Celebrate opportunity HP is proud to celebrate 25 years of the Americans with Disabilities Act. We support the achievements of individuals with disabilities, a commitment we share with our professionals around the worldâ&#x20AC;&#x201D;more than 300,000 people in 170 countries. We believe that diversity drives innovation. When our unique perspectives combine, we can change the world together.

ÂŠ 2014 Hewlett-Packard Development Company, LP. The Hewlett-Packard Company is an equal opportunity employer, dedicated to workforce diversity.

Bayer strives each and every day to advance â&#x20AC;&#x153;Science for a Better Lifeâ&#x20AC;? throughout the United States. Bayer MaterialScience is a proud supporter of the ADA and its progress as well as celebrating 25 years of Equal Access, Equal Opportunity.

Dick Thornburgh

Live Fully, Empower Individuals, Focus on Abilities, Realize Dreams and Nourish Potential When people with different backgrounds come together to meet challenges and solve problems, business is more creative, innovative, and, ultimately, more successful. Leveraging inclusion and diversity in Cargill leads to more ideas, more connections and more value for our customers. This is what makes a great company. Cargill’s LEARN Program is just one way we foster a culture of inclusion. Through a collaborative effort between Cargill and various educational partners, LEARN is dedicated

to removing barriers to employment and post-secondary education for young adults with disabilities. Students in the program attend a learning lab at Cargill. Here, they participate in internship rotations and experience “real life” individual career exploration focused on learning employable skills. Cargill is committed to ensuring equal employment opportunities and is a proud supporter of the Americans with Disabilities Act.

MetLife Center for Special Needs Planning SM

We didn’t set out to create The ADA Legacy Project. Our intent was to have a conversation about the preservation of disability rights history, and discuss the 25th anniversary of the Americans with Disabilities Act (ADA) in 2015. The more we talked the more we realized we needed to think in broader, bolder terms. We needed to ensure the ADA’s legacy: a world in which every citizen is accepted for who they are. And The ADA Legacy Project was born. Our mission is to honor the contributions of people with disabilities and their allies by: • preserving the history of the disability rights movement; • celebrating its milestones – including the 25th anniversary of the ADA; and • educating the public and future generations of advocates. This mission is being accomplished with the help of our many partner organizations and individuals who are working to preserve, celebrate, and educate. Together we are honoring this historic civil rights legislation and securing its legacy. Indeed, with our partners we have already accomplished a great deal. We have: • contributed content on our history for the National Center for Civil and Human Rights; • created ADA25 – the official celebration of the ADA’s anniversary – complete with logo, T-shirts, website, and plans for a celebration, march and rally in Washington, DC in July 2015; • supported development of The ADA Legacy Tour, which is crisscrossing the country from July 2014 to July 2015 to raise awareness and build excitement about ADA25; • facilitated development of a Disability Studies Journal commemorative issue for 2015; and • partnered with Faircount Media Group to produce this official ADA25 publication. This would not be possible without the support of our sponsors, to whom we are deeply grateful: Abilities Expo, The Ability Center of Greater Toledo, The ADA National Network, Amerigroup Foundation, Association of Programs for Rural Independent Living, Bender Consulting Services, Disability Rights Center, Faircount Media Group, Independence First, Jim and Mary Anne Carlson Family Foundation, Kessler Foundation, Merrill Friedman and Dave Johnson, Millersville University, The Minnesota Governor’s Council on Developmental Disabilities, Mitsubishi Electric America Foundation, National Association of Councils on Developmental Disabilities, National Coalition for Assistive and Rehab Technology, Portlight Strategies, Shepherd Center, Siemens, and The Southwest Conference on Disability. But there is more to do. When ADA25 passes there will still be history to preserve, milestones to celebrate, and new advocates to educate. The ADA’s legacy does not end in 2015. It is only just beginning. That’s why The ADA Legacy Project will continue long after the ADA25 decorations have been put away. We will need your support to do this. Contact us to learn how you can help to ensure the longevity of The ADA Legacy Project. We are grateful for the ADA and all it represents for the people of the United States and the world. And we are grateful for you. Sincerely,

Mark Johnson Project Chair, Director of Advocacy for Shepherd Center

Equal Access, Equal Opportunity 2 5 t h A n n i v e r s a ry o f t h e Americans With Disabilities Act Table of Contents Letters President George H.W. Bush.................................................................................5 The Honorable Tony Coelho..................................................................................7 Mr. Lex Frieden........................................................................................................9 The Honorable Elizabeth Dole..............................................................................11 The Honorable Bob Dole.......................................................................................13 The Honorable Dick Thornburgh..........................................................................15 The Honorable Michael B. Mukasey.....................................................................17 Mr. Mark Johnson....................................................................................................19 Features A History of the ADA...............................................................................................28 By Josie Byzek A Timeline of the Passage of the Americans with Disabilities Act...................47 The Capitol Crawl....................................................................................................48 Activists brought social and physical obstacles to light to help pass the ada By Craig Collins The ADA: What It Means at Home and Its Impact Abroad................................58 By Craig Collins A Q&A with Sen. Tom Harkin.................................................................................67 By Chuck Oldham

WE ARE PROUD TO JOIN

THE ADA LEGACY PROJECT

25 IN COMMEMORATING THE

ANNIVERSARY OF THE

AMERICANS WITH DISABILITIES ACT(ADA) The EstÃ©e Lauder Companies is committed to equal access, equal opportunity through our longstanding commitment to social responsibility, inclusion and diversity.

23 Shifting the Paradigm.............................................................................................72 Employees, employment, and employers By Eric Tegler The Built Environment: Beyond the ADA.............................................................80 By Craig Collins Access to Public Transportation............................................................................88 By Janine Bertram Kemp The ADA: Helping Students from Elementary School to College....................96 By Charles Dervarics Communications for All....................................................................................... 106 The ongoing effort to make telephone and Internet technology accessible for people with disabilities By Jan Tegler Technology for People with Disabilities Yesterday, Today, and Tomorrow.......................................................................................... 116 By Eric Tegler Reinforcing Federal Intent: The ADA Amendments Act of 2008.................. 124 By Charles Dervarics Wounded Warriors............................................................................................... 132 New programs, new technologies, and new attitudes support military personnel with disabilities By J.R. Wilson A Level Playing Field............................................................................................ 142 The evolution of rehabilitative, recreational, and competitive sports for people with disabilities By J.R. Wilson Disability in the Social Context........................................................................... 152 Changing the equation domestically and internationally for people with disabilities By Jan Tegler Next Steps............................................................................................................. 160 25 years after the passage of the ADA, the work of disability rights activists continues By Eric Seeger

Edward Kennedy, 1980 Andy Warhol screenprint courtesy of VSA, a Jean Kennedy Smith Arts and Disability Program.

The [Americans with Disabilities] act has the potential to become one of the great civil rights laws of our generation. Disabled citizens deserve the opportunity to work for a living, ride a bus, have access to public and commercial buildings, and do all the other things that the rest of us take for granted. ... This legislation is a bill of rights for the disabled, and America will be a better and fairer nation because of it. Edward M. Kennedy

Senator, Massachusetts Statement on the Senate Floor Praising the Passage of the ADA September 7, 1989

Resources ADA25: How Will YOU Celebrate?.......................................................................26 The ADA Legacy Tour Schedule............................................................................27 Resources.............................................................................................................. 168

The John F. Kennedy Center for the Performing Arts and The Smithsonian Institution

Equal Access, Equal Opportunity 2 5 t h A n n i v e r s a ry o f t h e A m e r i c a n s W i t h D i s a b i l i t i e s A c t Published by Faircount Media Group 701 N. West Shore Blvd. Tampa, FL 33609 Tel: 813.639.1900 www.faircount.com EDITORIAL Editor in Chief: Chuck Oldham Managing Editor: Ana E. Lopez Editor: Rhonda Carpenter Contributing Writers: Josie Byzek, Craig Collins, Charles Dervarics Janine Bertram Kemp, Eric Seeger Eric Tegler, Jan Tegler, J.R. Wilson DESIGN AND PRODUCTION Art Director: Robin K. McDowall Designers: Daniel Mrgan, Kenia Y. Perez-Ayala Ad Traffic Manager: Rebecca Laborde ADVERTISING Project Manager: Jim Huston Account Executives: Michael Blomberg Deborah Childress, Jared Crews Art Dubuc lll, Sylvia Ferentzy Laurinda Garrison, Damion Harte Ken Meyer, Bonnie Schneider, Jeff Vikari OPERATIONS AND ADMINISTRATION Chief Operating Officer: Lawrence Roberts VP, Business Development: Robin Jobson Business Development: Damion Harte, Kevin Higgins Financial Controller: Robert John Thorne Chief Information Officer: John Madden Business Analytics Manager: Colin Davidson Events Manager: Jim Huston Admin: Robert Austin

People with Disabilities Securing Civil Rights active, r e t n i An exhibit e l b i s s acce he ating t celebr versary nni 25th a ericans m A e ct of th lities A i b a s i with D Bay Area’s e and th ution to contrib rights. ity disabil

July 26, 2015 — December 2015 Ed Roberts Campus (Berkeley, CA) and traveling exhibit Presented by

FAIRCOUNT MEDIA GROUP Publisher, North America: Ross Jobson Publisher, Europe: Peter Antell SPECIAL THANKS: Kim Brussell, Andy Imparato, Mark Johnson, Janine Bertram Kemp, Tom Olin, Stephanie Thomas, Kristen Vincent, and Dan Wilkins Cover photo credits (top to bottom, left to right): Tom Olin Photography; photo by Christina N. Mills; Tom Olin Photography; photo by Sgt. Devin James; George Bush Presidential Library and Museum; photo courtesy of Atlanta Legal Aid; U.S. Air Force photo by Civ/Nan Wylie; photo courtesy of Gallaudet University; photo by Rick Guidotti; Gallaudet University Archives; and Tom Olin Photography

©Copyright Faircount LLC. All rights reserved. Reproduction of editorial content in whole or in part without written permission is prohibited. Faircount LLC does not assume responsibility for the advertisements, nor any representation made therein, nor the quality or deliverability of the products themselves. Reproduction of articles and photos, in whole or in part contained herein, is prohibited without express written consent of the publisher, with the exception of reprinting for news media use. Printed in the United States of America. None of the advertising contained herein implies endorsement of any private entity. This is not a publication of the U.S. government.

longmoreinstitute.sfsu.edu

With support from

Celebrating 25 Years of the ADA When the ADA turns 25 in July 2015, there will be celebrations all over the United States, from the smallest towns to the largest cities. To find events in your neighborhood, or to connect with existing event plans, visit www.adalegacy.com/ada25-how-will-you-celebrate. In addition to local events, the following national events are being planned in Washington, D.C., for the month of July 2015: • 12: VSA Young Soloist Event at The Kennedy Center • 22: Justice for All Awards & Rooftop Reception, Sponsored by the American Association of People with Disabilities • 22-25: Smithsonian Folklife Festival at The Museum of American History • 23-26: Smithsonian Film Festival • 25: National Dance Day Event at The Kennedy Center • 26: The ADA Legacy Tour arrives • 26: VSA Inaugural Lecture and Millennium Stage Performances at The Kennedy Center • 27: ADA25: A Celebration of Pride, Power & Promise • 28: ADA25 March, Rally, and Legislative Visits at Capitol Hill

How Will You Celebrate? This landmark civil rights legislation deserves to be celebrated in a big way! Advocates across the country have already begun to plan ADA25 in their neighborhoods, cities, and states. How will YOU celebrate? Here are some places to start. Connect with your local ADA center! The ADA National Network has 10 regional centers around the country. Every state is covered by one of the centers. The centers have agreed to serve as hubs for ADA25 planning in their particular regions. They will host conference calls so that everyone can share ideas, resources, etc. Visit adata.org/national-network to find out where your regional center is and how to connect with them! Find great resources! The ADA National Network also offers an online tool kit full of resources for planning and celebrating the ADA’s anniversary. Visit www.adaanniversary.org to find sample press releases, videos, monthly themes, an e-postcard, and more! Use the ADA25 logo! Our vibrant ADA25 logo is already in use across the country. Show your connection to the larger ADA25 community. Incorporate the logo into your events and promotional materials. Contact Dan Wilkins at dan@adalegacy.com. Learn about the ADA25 slogan! Disability rights ARE civil rights! That’s the slogan for ADA25. But what does that

mean? How can you incorporate this slogan into your ADA25 plans? Visit dsq-sds.org/ article/view/629/806 to understand better why disability rights are civil rights! Use our ADA25 media kit! We would love to have a consistent look and messaging for ADA25 events across the country. Feel free to use the ADA25 slogan, logo, and other resources found at www.adalegacy.com/ada25/ ada25-media-kit. Make the most of social media! Use #ADA25, #ADALegacyTour, #ADALegacy, and #becauseoftheADA in your posts. Share ideas and stories on our Facebook page (www.facebook. com/ADALegacy) and Twitter feed (@ ADALegacy). Post photos on Instagram. Post your events! We want to maintain a database of all ADA25 activities and events around the country. We offer a map where folks can click on their particular state and find out what is happening around them. Once your plans are in place, post your event at www.adalegacy.com/ get-involved.

Follow The ADA Legacy Tour! One of the ways we are raising awareness about and celebrating ADA25 is through The ADA Legacy Tour, a traveling exhibit that will criss-cross the country from July 25, 2014 – July 31, 2015. Check the Tour schedule at www.adalegacytour.com. Share your stories! We want to hear about what you are doing! How are YOU celebrating ADA25? What does the ADA mean to you? Were you born before or after 1990? What difference does the ADA make in your life? Share your stories at www.adalegacy.com/get-involved. Show your ADA25 spirit! Get an ADA25 commemorative T-shirt and wear it with pride! Visit www.thenthdegree.com/?product=ada-25th-anniverary-shirt to order yours today! Support ADA25! Make a donation to support all of these efforts – and more – to celebrate ADA25! Visit www.adalegacy.com/donate/2525-legacy-network to donate $25 (or any other amount) for ADA25!

27 to u r Sc h ed u l e

January TBD: Tampa, FL 27-31: Orlando, FL

February 22: Boca Raton, FL

March

Photo by Jon Wick

Attendees of the Association of Programs for Rural

Independent Living (APRIL) Youth Conference pose

for a photo with the Road to Freedom bus. The

drawing of Justin Dart, seen at far right, was done by

Michaela Kouti, one of the youth in attendance.

The ADA legacy Tour

he ADA Legacy Tour is rolling across the country raising awareness and building excitement around ADA25 – the 25th anniversary of the ADA in 2015. The Tour kicked off July 26, 2014, in Houston, Texas – home of President George H. W. Bush, signer of the ADA – and will end up in Washington, D.C., on July 26, 2015, for ADA25 festivities. The Tour includes: • the “Road to Freedom” ADA Bus – which traveled to 48 states in 2007 to raise support for the ADA Amendments Act – courtesy of the Disability Rights Center and driven by veteran disability rights photographer Tom Olin; • a four-panel display on the history of self-advocacy, courtesy of the Museum of disABILITY History; • displays on the ADA Legacy Project and its efforts to preserve disability history, celebrate its milestones, and educate future generations of advocates; • a “Because of the ADA ...” booth where you can post your thoughts and photos to illustrate the

difference the ADA has made in your life; • displays on the history of the Road to Freedom Tour; • a table with information on the ADA and The ADA Legacy Project, fun giveaways, and material from our partners and sponsors; and • events, workshops, artifacts, and other programming provided by local hosts. The ADA Legacy Tour schedule appears at right, although dates and locations may be modified. If you are along the route and can make a minimum donation of $250 (the cost of a tank of gas), it may be possible for the Tour to stop briefly in your community for a photo opportunity with Tom Olin and the “Road to Freedom” ADA Bus. Your support will help “Keep Freedom Rolling.”

1-4: Austin, TX 9-13: Denver, CO 17-20: Topeka, KS 30-31: Columbia, MO

April 2-4: Bentonville, AR 7-8: Hot Springs, AR 10-11: Memphis, TN 14-17: Nashville, TN 19-23: Washington, DC 29-30: Buffalo, NY

May 10-11: Atlanta, GA TBD: Birmingham and Montgomery, AL

June 1-8: Anderson, SC, Greenville, SC, Charlotte, NC, and Charleston, SC 12-13: Atlanta, GA 16: Springfield, IL 17-20: Indiana 24-27: Milwaukee, WI

July 1-4: Missoula, MT 11: Rochester, NY 13-14: New York, NY 18: Chicago, IL July 20: Toledo, OH July 22: Cleveland, OH July 25: Philadelphia, PA 26-28: Washington, DC

For more information about celebration events and Tour schedule, visit www.adalegacytour.com.

George Bush Presidential Library and Museum

A History of the ADA story By Josie Byzek

President George H.W. Bush signs the Americans with Disabilities Act on the South Lawn of

the White House, July 26, 1990. Sharing the

dais with the president as he signs the act are (standing left to right) the Rev. Harold Wilkie

of Clairmont, California, and Sandy Parrino, National Council on Disability; and (seated

left to right) Evan Kemp, Equal Employment

Opportunity Commission chairman; and Justin

Dart, Presidentâ&#x20AC;&#x2122;s Committee on Employment of People with Disabilities chairman.

Global Reach Global Perspective As one of the worldâ&#x20AC;&#x2122;s largest hospitality companies, with hotels, vacation exchanges, vacation rentals, and vacation ownership resorts, diversity and inclusion is a fundamental part of our culture and how we do business. By continually increasing the diversity of our people, we add great value to our business, and the experience we provide to our customers around the world.

Tom Olin Photography

n July 26, 1990, as he signed the sweeping civil rights legislation, the Americans with Disabilities Act (ADA), into law, President George H. W. Bush declared, “Let the shameful wall of exclusion finally come tumbling down.” He said more than that, of course. He thanked Evan Kemp and Justin Dart, who flanked him during the signing, and he cited the mighty coalition that succeeded in getting the ADA before him to sign. He noted there were too many instrumental people to name, a salute to how robust the movement to pass the civil rights law was. It was the most powerful coalition of people with disabilities and their allies ever assembled. They all had a stake in getting this law signed, from the mother who testified to Congress that she could not find an undertaker to bury her child who died of AIDS to the Vietnam War vet who could not freely leave his housing project because the sidewalks were not accessible for his wheelchair. There would be no ADA without thinkers like law professor Chai Feldblum, currently serving a second term as a commissioner with the Equal Employment Opportunity Commission (EEOC), who was the lead attorney on the team that drafted the ADA, or Patrisha Wright of the Disability Rights Education and Defense Fund (DREDF), nicknamed “the General” for how well she kept the lobbying heat on in Congress. Or without leaders like Lex Frieden, executive director of the National Council on Disability (NCD) at the time, who oversaw early drafts of the law. In fact, Feldblum, Wright, and Frieden’s experience speak to how sweeping the ADA is, as all three of their rights as people with disabilities are

31 Evan Kemp speaks at the Rally before

the Capitol Crawl in Washington, D.C.

Kemp, the disability movement’s “inside man,” was an influential advocate who helped to ensure the ADA’s passage.

covered even though one has an anxiety disorder, one has a visual impairment, and one has quadriplegia. These disabilities may seem dissimilar, but the discrimination faced as a result of each was effectively the same. But when telling the tale of the ADA, most agree that the two men who flanked Bush while he signed the law deserve special recognition. On his right sat Kemp, who had muscular dystrophy, and on his left sat Dart, who had polio. Evan Kemp, the Inside Man Kemp was the disability movement’s “inside man.” In the 1970s, Kemp worked as an attorney in Washington, D.C., and struck up a friendship with C. Boyden Gray, who years later would become

Bush’s chief counsel when he was vice president and then continue in that position through his presidency. Through Gray, Kemp also became friends with Bush, for whom Kemp wrote speeches for disability-related events. Kemp, a wheelchair user, was a tremendous advocate for disability issues. He pushed back against the Ronald Reagan administration when it tried to weaken disability-related regulations in the early 1980s and later served as the chair of the EEOC. Like many with disabilities, Kemp was no stranger to the indignities of discrimination. Diagnosed with a form of muscular dystrophy when he was 12, he walked with a pronounced gait, and private law firms wouldn’t hire a man with a disability. So he worked for the federal government. At first he held a position with the Internal Revenue Service, and then moved to the Securities and Exchange Commission (SEC). He became a wheelchair user in 1971 when a garage door at the SEC slammed on his leg, fracturing it so badly that even after it healed he could no longer walk. ‘’When I was walking, I had the same disability,” he once said. “But when I was in a wheelchair it was more visible.” Formerly in line for a promotion, he was told a wheelchair user could not hold a supervisory position. “The SEC told me my disability precluded me from supervising three people. President Bush appointed me to supervise over 3,000 employees when he made me chair of EEOC,” explained Kemp. In 1977, Kemp was able to sue for job discrimination — and won. But he had had enough of being denied positions for which he was

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Hilton Worldwide is proud to support the Americans with Disabilities Act and remains committed to expanding opportunities for people with disabilities.

EOE/AA/Disabled/Veterans

Tom Olin Photography

immensely qualified. So he left the government in 1980, took over as director of the Disability Rights Center, and became Washington, D.C.’s most prominent disability rights advocate. From his friendship with Gray and Bush to his experience working within government to his intimate knowledge of being excluded because of a disability, Kemp, a Republican, was in exactly the right place at the right time to help shepherd the ADA toward passage. “Even the Cleveland Browns football team played a role in building the coalition necessary to move the ADA into law,” stated Janine Bertram Kemp, Evan’s widow. “ADAPT leader Wade Blank and Evan were both avid Browns fans and it brought them together so that the grassroots had a line to

Protesters march in Washington, D.C., in March 1990 as part of a

campaign to urge representatives in

the House of Representatives to move ADA legislation out of committee.

the White House and visa versa,” she explained. Evan also had close ties to the National Council on Independent Living (NCIL). An example of this unity came into play in the summer of 1990. Although the president wanted to sign an ADA bill into law, his chief of staff tried to torpedo the bill. Evan Kemp called Blank and Marca Bristo, then-president of the NCIL, and they strategized an evening march to the White House. That gave the president the excuse to ask why protesters were angry

with the administration and send another strong message to White House staff that he wanted ADA. “Veterans of the movement call that the plastic bag march because it was pouring rain and ADAPT distributed black plastic trash bags to marchers to serve as rain gear,” said Bertram Kemp. In March 1990, when the ADA looked like it was stuck in committee, ADAPT (then called American Disabled for Accessible Public Transit) held a march from the White House to the steps of the Capitol, using a makeshift ramp to get to the marble steps. ADAPT held a rally and then members crawled up the Capitol steps. The media reported the action as disabled people demanding rights. A “tour” of the Capitol that ADAPT had arranged turned into a meeting in the Capitol Rotunda

AP Photo/John Duricka

between ADAPT and the House Speaker and the House Minority Leader and subsequent arrests – 104 of them – in the rotunda. The grassroots and insiders pushed the stuck bill out of committee.

Rep. Steny H. Hoyer, D-Md., left; Sen. Orrin

Justin Dart, the “Father of the ADA”

the passage of the ADA on Capitol Hill

While Kemp and other advocates in Washington, D.C., kept the heat on Gray and Bush from inside the Beltway, Dart, a wealthy man from a wealthy family, used his fortune to fire up the grassroots. Dart’s father, Justin Whitlock Dart, Sr., was president of Dart Industries — the company’s most famous product is probably Tupperware — and his mother, Ruth Walgreen Dart, was the daughter of Charles R. Walgreen, of Walgreens pharmacies. Dart contracted polio in 1948 as he was preparing to enter the University of Houston. He earned

Hatch, R-Utah, wiping a tear of joy; Justin

Dart, chairman of the President’s Committee on Employment of People with Disabilities, wearing his trademark cowboy hat; and

Yoshiko Dart, clapping her hands behind

Justin, show their emotions while celebrating in Washington, D.C., on July 13, 1990.

degrees in history and education, but the university wouldn’t give him a teaching certificate because he was disabled. Today the university is home to the Justin Dart, Jr. Center for Students with Disabilities, which assists all students with disabilities to achieve their academic goals. After graduating, Dart’s father sent him overseas to launch Tupperware™ Japan, a company that he grew from four employees to 25,000. He embraced the “corporate playboy” lifestyle — chasing booze, women, and money.

He founded a greeting card company staffed by employees with disabilities during this time period, but said he felt like a fraud, as if he’d fallen off the “Gandhi track” to race along the “Donald Trump” track. This all changed dramatically when he came face to face with the evils of institutionalization. In 1966, he toured a facility for children with polio in Saigon, Vietnam. “The floor of the whole place was covered with children ages 4 to 10, with bloated stomachs and matchstick limbs,” he told New Mobility magazine. “They were starving to death and lying in their own urine and feces, covered with flies. A little girl reached up to me and looked into my eyes. I automatically took her hand and my photographer took pictures. She had the most serene look I have ever seen — and it penetrated to the deepest part of my consciousness. I thought, here is a person almost dead, and she knows it. She’s reaching out for God and has found a counterfeit saint doing a photo op. I was engulfed by the devastating perception that I have met real evil, and I am part of it. The way I’m living and dealing with disability is killing this little girl. I’m going to go to my hotel, drink Johnnie Walker, eat a steak, and this picture is going to be in some magazine. I told [my fiancée] Yoshiko, ‘We cannot go on as we have been. Our lives have got to mean something. We have got to get into this fight and stop this evil.’” When Dart and Yoshiko moved back to the United States, he began serving the public in high-level roles, including being appointed by Reagan in 1981 to be vice chair of the NCD. Dart, like Kemp, was a high-profile Republican with a visible disability — and it didn’t hurt that Reagan was a close friend of the Dart family. While vice chair of NCD, Dart used his own money to tour every

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37 Lois Curtis (left) and Elaine Wilson (right) were the plaintiffs in the landmark case

Olmstead v. L.C. and E.W., in which they sued the state of Georgia for forcing

them to live in an institution even though state assessments indicated they would

be better served with community based

living and treatment. In 1999, the Supreme Court ruled that, under the ADA, people with disabilities have the right to live in

Tom Olin Photography

the community rather than in institutions.

state and territory to meet with all who were interested in disability policy. The tour allowed Dart to meet face to face with people who had every type of disability and hear their concerns. This trip took place in pre-ADA America, a time period where there were no guarantees of accessible hotel rooms or transportation. When Dart returned to Washington, D.C., he shared these conversations with his fellow council members and NCD drafted a report, “Toward Independence,” calling for a law that would protect the civil rights of people with disabilities. This would eventually lead to the Americans with Disabilities Act. After the ADA was introduced as a bill, Dart and Yoshiko repeated their national tour, once more visiting every state to hold public forums about the ADA and to keep the grassroots engaged. It is estimated that more than 30,000 people attended these forums, and many of them advocated for the civil rights legislation in one way or another. At that time, Congress maintained there was no proof that discrimination on the basis of disability was systemic and existed. The Darts collected thousands of discrimination diaries on their tour and then officially submitted them to Congress in response to this concern.

These tours of the nation and the subsequent personal connection to the grassroots of the young disability rights movement led to Dart becoming known as the “Father of the ADA.” Those in power, too, connected Dart with the ADA. Once, when he saw Dart wearing his iconic cowboy hat at a White House reception, Bush introduced him as “the ADA man.” That hat is now lodged in the Smithsonian Institution in Washington, D.C.; Dart’s basic steel-framed manual wheelchair resides at the National Constitution Center in Philadelphia, Pennsylvannia. Although he could afford the finest equipment, Dart insisted on using the same type of wheelchair as impoverished Americans with disabilities. Section 504 – The Accidental Civil Rights Law These early origin stories of the ADA are stirring and dramatic — all the more because they’re true. But they can give the mistaken impression that America was a disability rights wasteland, and then

along came the ADA. Certainly the nation was much less accessible, yet the ADA was built upon the solid work of earlier pieces of legislation. Part of its brilliance is how it took those earlier laws and wove them together into one comprehensive act. Probably the most important precursor to the ADA was Section 504 of the Rehabilitation Act of 1973. It is very short, a tiny part of the overall law: “No otherwise qualified handicapped individual in the United States, shall, solely by reason of his handicap, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance.” Nixon refused to sign the rehabilitation act into law, as it called for new funding for independent living programs, a new idea back then. The law came before him twice, and twice he would not sign it. The third time it hit his desk, it was watered down and most of the funding for independent living was removed. So he signed

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it, without understanding that the language in the law’s Section 504 would usher in civil rights for people with disabilities. And this is where it gets interesting. Dr. James L. Cherry, a veteran with quadriplegia who was a research patient at the National Institute of Health in Bethesda, Maryland, read Section 504 and asked the Department of Health, Education, and Welfare (HEW) when the regulations would be promulgated. HEW told him never, since it was just a policy statement. “I aggressively disagreed,” wrote Cherry in The Ragged Edge. “I

Disability rights activists congregate in San Francisco’s U.N. Plaza (City Hall is visible

in the background) in 1977 to protest the failure of the 1973 Rehabilitation Act’s

Section 504 regulations to be released.

didn’t see mere ‘policy’ — I saw legal rights and power; and I wanted both.” Cherry sought support from disability groups to push for regulations to be written, but didn’t have much luck. Finally, he convinced attorneys from the Georgetown University Law Center to help him file a federal lawsuit, Cherry v. Mathews,

on Feb. 13, 1976. He won his case and HEW was ordered to develop regulations. At the same time, and unknown to Cherry, the new American Coalition of Citizens with Disabilities was also lobbying HEW for Section 504 regulations. In 1974, Linda Pedro, from New Mexico, sued under 504 for the right to stay in her own home and raise her son. Pedro became quadriplegic after sustaining a spinal cord injury in a car accident. Her husband left her with a young son. Rather than provide services and supports, the state planned to break up her family by forcing her into a

Photos by HolLynn Dâ&#x20AC;&#x2122;Lil

nursing home and placing her son, Daniel, in foster care. She sued under Section 504 and won, setting an early stage for ADA and later the Supreme Court decision in Olmstead v. L.C. and E.W., which many term the disability movementâ&#x20AC;&#x2122;s Brown v. Board of Education, that gave people with disabilities the right to live in the least restrictive environment. In 1977, the regulations were written, but HEW Secretary David Mathews refused to sign them, even though he was held in contempt. He was outgoing anyway, as President Jimmy Carter was just taking office and had already appointed Joseph

In April 1977, activists demanding that

Section 504 regulations be issued staged a sit-in at the Department of Health,

Education, and Welfare (HEW) building

in San Francisco, California, that lasted 28 days. Top: Sit-in organizer Judy Heumann (far right) speaks with fellow protesters

from inside the HEW building. Above: Sit-in

participants slept on the HEW building floor during the course of the demonstration.

Califano as secretary of HEW. But Califano also did not want to sign off on them. By this time, there was a groundswell movement among people

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with disabilities demanding those regulations be signed. “If the regulations were not signed by April 4 in the form they were in when Califano took office, there would be nonviolent demonstrations in HEW offices nationwide,” wrote David Pfeiffer in Disability Studies Quarterly, which he edited. Pfeiffer was organizing demonstrations for the regulations in Boston, Massachusetts, and warned that demonstrations in San Francisco, California, and Washington, D.C., would be large. And thus the stage was set for the longest sit-in in U.S. history until the 2011 Occupy movement broke its record. The

A polling place with accommodations for people with disabilities enables

members of the disability community

to exercise their right to vote. Passage of the ADA was significant in that it

defined access – physical and social – for people with disabilities as a

civil right, not a privilege or favor.

demonstration in San Francisco began on April 5, 1977, as activists filed into the city’s HEW building and refused to leave until the regulations were signed. With the help of the Black Panthers, local church groups, and even local politicians who donated

Contributed by Rocky Mountain ADA Center, a project of Meeting the Challenge, Inc.

43 mattresses, they stayed 28 days. Finally, Washington, D.C, invited a contingent of the activists to the Capitol for negotiations and the regulations were signed soon after. “We, who are considered the weakest, the most helpless people in our society, are the strongest and will not tolerate segregation, will not tolerate a society which sees us as less than whole people,” said Ed Roberts, who, along with Judy Heumann, is credited with organizing San Francisco’s sit-in. Roberts and Heumann are both well-known figures in the disability movement for founding and nurturing the independent living movement. Why were these regulations so resisted? Discrimination against people with disabilities at the time was so common and so insidious that even many people with disabilities didn’t understand it for what it was. “People with disabilities ourselves didn’t think the issues we faced in our daily lives were the product of prejudice and discrimination,” wrote Kitty Cone in her article, “Short History of the 504 Sit-in.” “Disability had been defined by the medical model of rehabilitation, charity and paternalism. If I thought about why I couldn’t attend a university that was inaccessible, I would have said it was because I couldn’t walk, my own personal problem. Before Section 504, responsibility for the consequences of disability rested only on the shoulders of the person with a disability rather than being understood as a societal responsibility. Section 504 dramatically changed that societal and legal perception.” Yet, like the ADA, Section 504 did not just spring into being from nothing. In 1968, the Architectural Barriers Act (ABA) was signed, requiring federal buildings and

federally funded buildings to be accessible to the public. This meant a way in, a way out, and — very important — accessible restrooms. Because of this law, Uniform Federal Accessibility Standards (UFAS) were developed by an Access Board, which still revises both UFAS and the ADA Accessibility Guidelines. The ABA owes its existence to historian and author Hugh Gallagher, who, at the time, worked as legislative aide for Democratic Sen. E.L. Bartlett of Alaska. Gallagher, a wheelchair user since age 19 due to polio, shared his frustrations of trying to simply do his job, but being unable to access many federal buildings. About the law, Gallagher said, “I wanted it to be simple. I wanted accessibility to be one of the items on the checklist of designers and builders.” Sen. Bob Dole, R-Kan., a supporter of the ADA, wrote, “Hugh’s most outstanding contribution to the quality of life of people with disabilities was to successfully place disability on the agenda of the Congress for the first time.” The Right Place at the Right Time Many other disability-related civil rights laws were passed in the years leading up to the ADA. The Education for All Handicapped Children Act, now known as the Individuals with Disabilities Education Act, was passed in 1975 with the intent of ensuring students with disabilities receive equal access to education. This act included students with intellectual and psychiatric disabilities, which was important in building a crossdisability movement. The Air Carrier Access Act of 1986 and the Fair Housing Act Amendments of 1988 made it easier to travel and to have a home. And the rights of people with disabilities to live in the

Gallaudet University Archives

People march to the Capitol in Washington, D.C., on March 11, 1988, during the Deaf

President Now movement to name I. King Jordan president of Gallaudet University.

community also had begun to be recognized. All of these laws, and many more not listed, had their own groups of supporters, and the ADA could not have been passed in as strong a form as it did without all of these efforts. Who’s idea was the ADA? In a sense, it was everyone’s who was active in disability rights at the time. It was born in the Washington, D.C. Beltway in discussions between Evan Kemp and Phil

Calkins, who dreamed about such a thing while holding trainings for the Disability Rights Center. It was born on the interstate highways connecting the public forums held by Justin and Yoshiko Dart. It was fought for in the HEW building in San Francisco and yearned for by young Judy Heumann, who demanded the right to teach school in New York City — the first wheelchair user to do so. The 1988 Deaf President Now movement at Gallaudet University had a profound effect on the ADA in that it put disability in the mind and heart of then-Vice President George H.W. Bush. The Gallaudet board of trustees was about to name Elisabeth Zinser, a hearing person who did not

speak sign language, president of the university. In the history of the university, there had never been a deaf president. Students said they wanted I. King Jordan named president. Jordan was an educator who was deaf and part of the Gallaudet community. The students took over the university in protest. Kemp heard about the protest early on, went to Gallaudet, and got Bush to send a letter supporting Jordan as president. This connected the deaf and disability community to the vice president and also put disability discrimination in the future president’s consciousness. When the ADA was signed on July 26, 1990, the president was flanked by two men, but those two

ADA|25

Photo by Jon Wick

ANOTHER STARTING POINT FOR... « changing mindsets; « educating employers about talented workers with disabilities; Youth attending a conference staged by the Association of Programs for Rural Independent

Living cheer during a stop made by the ADA Legacy Tour, an exhibition traveling around the

country to raise awareness and excitement in anticipation of the 25th anniversary of the ADA.

men were flanked by thousands more. Held on the South Lawn of the White House, it was the largest signing ceremony in White House history, with more than 3,400 people in attendance. And certainly the ADA was one-of-akind legislation, comprehensively granting broad civil rights to citizens with disabilities, but it came about because of a long history of legislative action. When Bush proclaimed the shameful walls of exclusion finally were falling down, thousands of activists nationwide felt a strong sense of accomplishment. But the ADA was neither a start nor an ending. Disability rights laws were passed before the ADA and have been passed since the ADA. The movement for full recognition of the civil rights of

« rallying our next generation of disability rights leaders and advocates.

people with disabilities has come a long, long way, and the 25th anniversary of the ADA deserves to be celebrated, as do those who helped to make it possible. But like those activists who have come before us, we must continually look to what can come next. And once we achieve that, we must reach for more until every person with a disability has full and equal access to all our great society has to offer, until full inclusion is no longer a dream but a reality. n Josie Byzek is a longtime disability rights advocate who is currently the managing editor of New Mobility magazine. She became active in September 1990, two months after the ADA was signed, making her one of the first post-ADA advocates.

viscardicenter.org

“It’s up to each of us to deliver on the promise of the ADA.” Stephen R. Howe, Jr. is the EY Americas Area Managing Partner and the Managing Partner of Ernst & Young LLP in the US. He chairs the EY Americas Executive Board and the US Board and is a member of the EY Global Executive Board. Steve is the EY Americas Executive Sponsor for inclusiveness, and he actively champions diversity and inclusion across a host of professional and civic associations. EY has been recognized for its leadership by organizations including DiversityInc, Catalyst, Working Mother, the Human Rights Campaign and the National Association for Female Executives.

When I was growing up, there was no ADA. It was the age of telethon poster children, “handicapped” kids attended separate schools, and when encountering people with disabilities in public, adults often looked away and admonished their children not to stare. My dad had a disability. I learned early to see who he was and what he did, not the special shoe he wore to help him walk. I took this for granted until one day when the two of us were in a large barbershop. My mother called the shop asking for my father. The barber listened to her description — dark hair, glasses, 5’11”. He scanned the shop and finally stopped at my dad, grinning, and then said, “Well, why didn’t you just say he’s the guy with the big shoe?” I realized then that others saw his difference; in our family, all we saw was my dad. I’m proud to say that actively including people of diverse abilities is personal for many of us at EY. One of our founders, Arthur Young, was deaf and had low vision. He was trained as a lawyer, but his disabilities made it difficult to practice, so he turned to the field of accounting where he could leverage his skills and training in different ways. He became an entrepreneur and innovator, not despite his disabilities, but because of them. Inspired by his legacy, we’ve been working to create an environment where talented people of all abilities can feel comfortable and do their best work. We know that exceptional people come from different generations and ethnicities, speak different languages, and have different spiritual beliefs and sexual orientations. We also know that each one of us comes with differing physical, cognitive and mental health abilities. My dad acquired his disability when he was 18. Our abilities can change for any reason, at any time. Our challenge — in fact, the challenge for all businesses — is to find the best people and help them tap into their full talents to create exceptional value for the organization and career success for themselves. At EY, we like to say we don’t have a single person with disabilities. Instead, around the world we have 190,000 people with diverse abilities. We leverage our differences to drive innovation, growth and top performance. The ADA lays a strong foundation for our country’s commitment to equal opportunity for people of all abilities. But it’s only a start. It’s up to each of us to deliver on the promise of the ADA. We are continually working to build an organization that’s inclusive of all abilities. We believe that’s a core competitive advantage for our business. It helps us create the highest-performing teams and deliver the most innovative solutions for our clients. It’s both the right thing to do and the smart thing to do. We hope that our work will create opportunities and inspire others to achieve a purpose I know we all share — to help build a better, and more inclusive, world.

A Timeline of the Passage of the Americans with Disabilities Act 1984: The National Council on Disability (NCD) is ordered

by Congress to review all federal programs relating to disability and submit a report with recommendations on how Congress can encourage and bolster the independence of persons with disabilities while minimizing dependence on governmental programs.

1986: NCD’s report “Toward Independence” is released

in February. Primary among more than 40 different recommendations to Congress is passing a comprehensive, equal opportunity law for people with disabilities. Following months of subsequent inaction by Congress, NCD begins to draft its own legislation for congressional consideration. This draft becomes known as the Americans with Disabilities Act (ADA).

1987: NCD successfully solicits Sen. Lowell P. Weicker, Jr.,

R-Conn., and Rep. Tony Coelho, D-Calif., to sponsor the ADA legislation and to introduce the bill to Congress.

1988: After incorporating input from the disability commu-

nity, Weicker and Coelho introduce the ADA draft to the Senate and House on April 28 and April 29, 1988. Supporters do not expect the bill to pass, but view its introduction as an opportunity to put the issue into the spotlight. Disability rights advocates work to publicize the bill and build a nationwide coalition of support in advance of reintroduction of the ADA the next year.

1989: • Sen. Tom Harkin, D-Iowa, stepping in as the ADA’s Senate sponsor after Weicker loses reelection, works with Sen. Edward Kennedy, D-Mass., and various constituencies to recast the ADA bill in order to improve the chance of passage. On May 9, Harkin and Coelho introduce the rewritten ADA to both houses of Congress. The Senate begins deliberations, and, after some changes to the bill, passes the ADA 76-8 on Sept. 7. • The House begins deliberations on the version of the ADA passed by the Senate. Over the next nine months, four House committees and six House subcommittees review and negotiate the bill. Rep. Steny H. Hoyer, D-Md., in the wake of Coelho’s resignation from office, steps in to usher the bill through the various committees. Changes are made to the bill to strike a balance between addressing the mainly financial concerns of the business community and ensuring the civil rights protections desired by the disability community.

1990: • May 22: The House of Representatives passes its amended version of the ADA, 403-20. The version of the bill that passes contains, to the dismay of the disability community, the Chapman amendment, which seeks to prohibit people with communicable diseases such as AIDS from foodhandling jobs. • May 24: The House calls for a conference with the Senate to work out the differences between the two approved versions of the ADA. The Chapman amendment puts passage of the ADA into jeopardy: A majority in Congress supports the amendment, but the disability community, united in its stand for protection for all people with disabilities regardless of the type, will not support the legislation if the amendment remains. Without its support, the bill stands no chance of being signed into law. • June 25: By this date, the vast majority of differences between the two versions of the ADA have been resolved. On June 25, conferees meet to resolve remaining differences, including the Chapman amendment. Both House and Senate conferees reject the Chapman amendment, agreeing the discriminatory nature of the amendment would undermine the purpose of a bill seeking to prohibit discrimination, and agree upon a single version of the ADA. The next day, the conference delegates prepare a report with the results of their deliberations. • July 11: Senate floor deliberations begin on the conference report. Sen. Jesse Helms, R-N.C., a Chapman amendment supporter, attempts to send the legislation back to conference and insist that Senate conferees add the Chapman language back in. Sen. Orrin Hatch, R-Utah, circumvents Helms’ move by introducing an amendment that states people with communicable diseases may be dismissed or excluded from foodhandling jobs only if scientific evidence shows that the disease in question can be transmitted that way. The Senate approves the Hatch amendment. • July 12: Senate conferees prepare a report of the previous day’s actions. The House of Representatives convenes to deliberate over this second conference report. The House joins the Senate in its rejection of adding the Chapman amendment back into the bill, then votes on the entire ADA, passing it nearly unanimously. • July 13: The Senate votes on the ADA, passing it by a wide margin. • July 26: In front of more than 3,000 guests – people with disabilities and without – President George H.W. Bush signs the Americans with Disabilities Act into law.

THE CAPITOL CRAWL activists brought social and physical obstacles to light to help pass the ada Story by craig collins

y March 1990, the Americans with Disabilities Act (ADA) had made significant progress on its way to becoming law. It had already passed the Senate by a 76-8 vote months earlier, and it had powerful sponsors and supporters in both the House and the Senate, in both the Republican and Democratic parties. However, it had stalled in the House, grinding its way through several committees. Given other abandonments of legal recognition of the civil rights of people with disabilities, like the implementation of Section 504 of the Rehabilitation Act of 1973 and writing of regulations, people within the disability community were not entirely optimistic that things would work out well in the end. The uncertain future of the ADA legislation explains why Capitol Hill became the setting for one of American history’s most extraordinary public protests – why 60 people with disabilities cast aside their wheelchairs, crutches, and walkers to crawl or drag themselves, step by step, up the 78 marble stairs of the Capitol’s West Front on March 12, 1990. The Capitol Crawl, as the protest came to be known, was intended to bring to light the obstacles, physical and social, that people with disabilities faced daily in their efforts just to proceed with their lives. By

openly illustrating the struggles that people in the disabilities community faced, the protesters hoped to spur Congress to pass the ADA and protect the civil rights of people with disabilities. The protest on the steps of the Capitol was not without precedent. Before there was a campaign to pass the ADA, there was a campaign to ride public buses. It began in Denver, in 1974, when a radical minister by the name of Wade Blank, after being fired from his job as a nursing home aide for repeated acts of rebellion against the dehumanization of the nursing home residents, established Colorado’s first independent living center, the Atlantis Community; it was also one of the first independent living centers in the nation. Within a few years, it became obvious to Blank and the other members of the Atlantis Community that it would be impossible for people with disabilities to live independently if they couldn’t move about freely – and they couldn’t move about freely if operators such as local transit authorities continued to delay making the modifications, including wheelchair lifts on buses, required by the Rehabilitation Act of 1973. The residents formed an organization modeled after the grassroots, nonviolent direct-action groups that had achieved so much during the civil rights movement.

Atlantis staged its first protest on July 5 and 6, 1978, when Blank and a group known as the “Gang of 19” surrounded two inaccessible buses operated by Denver’s Regional Transit District (RTD), boxing them in for 24 hours. These first activists – like the Greensboro Four who sparked the nationwide campaign to integrate public lunch counters in 1960 – inspired further action. As their battle for access to RTD continued, they took steps to address the transportation accessibility problem in communities across the nation. Atlantis began the Access Institute and recruited disability activists from around the country. These individuals eventually formed ADAPT, American Disabled for Accessible Public Transit. Protesters blocked buses and crawled up the stairs of buses to illustrate the absurdity of the operators’ refusal to comply with federal law. In 1982, Denver’s Regional Transit District conceded, ordering 89 new accessible buses. ADAPT’s Denver success led it to form chapters in other cities. For the next seven years, the organization mobilized protests at biannual conventions of the American Public Transit Association, or APTA (now American Public Transportation Association), the trade association for public transportation providers.

49 On March 12, 1990, a group of disability

rights activists cast aside their wheelchairs, crutches, and walkers and crawled or

dragged themselves up the marble steps of the Capitol Building in Washington, D.C., to bring to light the obstacles

faced by people with disabilities. The demonstration, known as the Capitol

Crawl, was part of a larger campaign to support passage of the Americans with Disabilities Act as a means to protect

Tom Olin Photography

civil rights for people with disabilities.

In September 1989, as public and private bus operators were trying to load up on cheap, inaccessible buses in advance of the ADA’s anticipated passage, ADAPT members occupied the federal building in downtown Atlanta overnight, where they received a clear signal that the White House was on their side: As they were being arrested and cleared out by police, President George H. W. Bush himself called to

request that they be escorted back inside. The next day, officials from the U.S. Department of Transportation (DOT) arrived by helicopter to help negotiate a temporary moratorium on inaccessible bus purchases. The Wheels of Justice Campaign This was where things stood in March 1990: The ADA remained bottled up in the House

Committee on Public Works and Transportation (now the House Committee on Transportation and Infrastructure). From the outset of the campaign to pass the ADA, the provisions that most concerned advocates were those covering transportation, which were opposed by a powerful lobby including groups such as Amtrak, Greyhound, the American Bus Association, and APTA. One of the most influential allies for these groups was Bud Shuster, R-Pa., a committee member who had authored a “poison pill” amendment exempting rural areas from making buses accessible. ADAPT’s leaders – including Mark Johnson, national leader Mike Auberger, and Bob Kafka and Stephanie Thomas of ADAPT of Texas – decided the time had come to press their advantage: They would go to Washington, publicize their cause, and demand to meet with House leaders, including Shuster, to persuade them to vote the ADA out of committee and bring it to the floor, where it was sure to pass into law. ADAPT members came together in Washington, D.C., on Sunday, March 11; a total of about 200 activists congregated at a hotel sharing the only three wheelchairaccessible guestroom bathrooms. The following day about 475

In the years leading up to the Capitol Crawl, disability rights activists had

engaged in nonviolent direct actions protesting public transit authorities

and private transportation companies

that failed to provide accommodations for people with disabilities. Above:

Protesters block a Greyhound bus in

St. Louis, Missouri. Left: Activist Mike

Auberger locks himself to a revolving

door during a protest in Atlanta, Georgia.

people, many in wheelchairs, gathered on the sidewalk in front

of the White House to launch what they called the Wheels of Justice Campaign. They marched down Pennsylvania Avenue, where they were joined by another 250 people at the bottom of the marble steps leading up to the West Front of the Capitol Building. Here Kafka introduced several speakers: First was Justin Dart, the new chairman of the President’s Committee on the Employment of People with Disabilities, who praised the marchers as the “pioneer patriots of the 20th century.” Several others

Tom Olin Photography

Everyday, we encounter courageous people who change the game when it comes to living with a disability. It is their stories and their hopes that

REMIND US THAT EVERYONE HAS VALUE. Together, may we always find the resources and the heart to create equality and accessibility in the lives of many.

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53 followed: members of Congress; Equal Employment Opportunity Commission (EEOC) Chair Evan Kemp; I. King Jordan, the first deaf president of Gallaudet University; and James Brady, the former White House press secretary who had been shot in the head during the 1981 assassination attempt on President Ronald Reagan. The crowd of approximately 1,000 people – one of the largest and most diverse disability rights protests in history, with people representing many different disabilities – was spirited, occasionally erupting in shouts of “Access is our civil right!” and “We will ride!” Protesters became electrified, however, when Auberger wheeled up to the microphone to tell his story: As a ninth-grade student on a tour, he said, he had once walked up these very steps, but a 1971 accident had left him with quadriplegia. “Today I sit here with you as lessthan-second-class citizens who are still legally discriminated against daily,” he said. The crowd shouted encouragement as he continued, his voice rising with emotion: Among us are those who have been forced to live in institutions against their will. There are those among us who have had our children taken away solely because we were disabled. We have been denied housing and jobs. These indignities and injustices must not go on. We will not permit these steps to continue to be a barrier to prevent us from the equality that is rightfully ours. The preamble of the Constitution does not say: “We the able-bodied people.” It says: “We the people.” That was the agreed-upon cue for ADAPT protesters to throw themselves out of their chairs and begin crawling up the marble steps

Justin Dart, pictured here among a

crowd of protesters, was the first person to speak at the gathering at the West

Front of the Capitol preceding the crawl.

of the Capitol. A few people knew something was going to happen, but only a handful knew the plan. Yet as people saw what was taking place, more and more joined the crawl. Some who could not crawl were assisted by others to make their way up. Sixty people joined in. Kafka found the 78-step crawl more physically demanding than he’d expected: “It took me forever,” he said. “It was embarrassing. People were passing me on the steps. I think it must have taken me 45 minutes. Some of the stronger people actually pulled their own wheelchairs up to the top. I was fascinated by that.” Though the march, and the ensuing crawl, comprised one of the largest disability direct actions

to date, it was still pretty small by Washington standards, and didn’t make it into many of the next morning’s national newspapers, though the New York Times had both a story and a beautiful photo. But Kafka and the event’s other architects hadn’t aimed the crawl at the print media. For the people who saw the crawl on regional television newscasts that night, the imagery of disabled people dragging themselves up the Capitol steps was so bizarre and shocking that few likely remembered the purposeful actions that followed. The next day, Tuesday, 200 disabled activists, led by Kafka, Thomas, Auberger, Blank, and Johnson, showed up in the Capitol Rotunda for a scheduled “tour” of the building, but slowly chained their wheelchairs together, began chanting, and demanded to speak to House Republican Leader Bob Michel, R-Ill., and Speaker Tom Foley, D-Wash. (Other legislators were there; Steny Hoyer, D-Md., for one, spoke with protesters at length.) Foley and Michel spoke a lot about prompt passage of the ADA but would make no commitments, so the activists refused to disperse and Capitol police began arresting and taking them away, one by one in the building’s tiny elevator. One hundred and four ADAPT members were arrested, and it took more than six hours to get them out of the building. On Wednesday, after a failed attempt to disrupt service on the Capitol train, activists regrouped and took over the office of Shuster, who had authored the amendment weakening the ADA’s

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transportation provisions. Sixtyfour more activists were arrested. Thursday and Friday were spent in court, where Auberger was slapped with a $500 fine and placed on a year’s probation; when he, Thomas, and three others reported to the federally funded probation office on Friday, they found that there was no ramp allowing them into the building. Marble steps were provided for those without disabilities, but the wooden ramp had rotted away and had not been replaced. Their lawyer was forced to intervene to get them registered for the year of probation. Shuster’s amendment was among several rejected in the House. The bill went to conference, where one of the last restrictive amendments, the infamous Chapman amendment, allowing employers to remove persons with contagious diseases (i.e., AIDS) from food-

Above: A group of 200 activists with

disabilities congregate in the Capitol

Rotunda on March 13, 1990, demanding

to speak with U.S. representatives to urge them to pass the ADA. One hundred and four members of ADAPT were arrested.

(Stephanie Thomas is pictured in the center of the group with her fist raised.) Right:

Protesters occupy the office of Rep. Bud

Shuster, who had authored an amendment weakening transportation provisions

in the ADA; 64 activists were arrested.

handling positions, was excised after heated debate. The bill passed overwhelmingly and was signed into law by Bush on July 26. The Crawl’s Legacy After winning the fight for public transit access, ADAPT changed its focus to community-based services

and deinstitutionalization. For years after 1990, ADAPT stood for “American Disabled for Attendant Programs Today.” Today ADAPT is involved in a variety of campaigns, and is no longer considered an acronym: It’s just ADAPT.

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On the ADA’s second anniversary in 1992, the city of Denver dedicated a plaque at the intersection of Broadway and Colfax, honoring the names of Wade Blank and the Gang of 19. A large mural inside the transit station now memorializes Blank’s legacy. Numerous observers – including many who had fought passionately for the ADA – questioned ADAPT’s tactic of crawling up the Capitol steps, and particularly the group’s inclusion of 8-yearold Jennifer Keelan – a woman who, Kafka pointed out, is now studying at Arizona State University and preparing for a career in occupational therapy. Mary Johnson, editor of the disability rights publication The Disability Rag, wrote: “One might question why a movement intent on showing that disabled people are adults, not children, would make their central media image

Michael Winter, left, and Jennifer

Keelan on their climb up the Capitol

steps during the crawl. Of the action, Winter later wrote, “I felt that it was necessary to show the country what

kinds of things people with disabilities have to face on a day-to-day basis.”

a child.” The counterargument by crawl participants maintains that Keelan was one of 60 people who participated in the crawl – she was not the center. Additionally, organizers of the crawl saw the action as a fight for recognition and equality not just for themselves, but for the future generations of people with disabilities, as well – for children like Keelan. It’s also true, however, that the image of young Jennifer Keelan climbing the Capitol steps – like the image of Birmingham schoolchildren being blasted with

fire hoses, or of a lone man with shopping bags facing down a line of tanks in Tiananmen Square – is today an unforgettable emblem of a historic movement. And that, really, was the whole point of the Capitol Crawl. Years after completing the crawl – just behind Keelan, every step of the way – the late Michael Winter, former executive director of Berkeley’s Center for Independent Living, contributed his reflections to ADAPT’s 25th anniversary “I Was There” series of firsthand accounts: “Some people may have thought it was undignified for people in wheelchairs to crawl in that manner,” Winter wrote, “but I felt that it was necessary to show the country what kinds of things people with disabilities have to face on a day-to-day basis. We had to be willing to fight for what we believed in.” n

THE ADA: WHAT IT MEANS AT HOME AND ITS IMPACT ABROAD Story by craig collins

he Americans with Disabilities Act (ADA), as amended by the ADA Amendments Act of 2008, is a civil rights law that prohibits discrimination against people with disabilities in all areas of public life: the workplace, school, transportation, and all state and local government programs and private businesses open to the general public. The law rests on the same simple principle that anchors the Civil Rights Act and other anti-discrimination laws: Discrimination rooted in ignorance or prejudice denies a person his or her constitutional rights, obligations, and opportunities, and is unlawful. While the principle is simple, the realization of it in American society has proven thornier, over the past 25 years, than enforcement of other civil rights laws. Whether a person is African-American, or Catholic, or belongs to any other class of person covered by the Civil Rights Act, isn’t really a debatable issue – but as the courts have demonstrated for more than two decades, whether a person is “disabled” is apparently an open question. The purpose behind the ADA Amendments Act (ADAAA) of 2008 was to shut down such questions – and resulting lawsuits – by refining the definition of “disability” and broadening the groups of individuals who are covered. More important, the ADAAA also redefined the most essential

question that should be asked in cases of discrimination. It’s not: Does the person have a disability? It’s: Was there discrimination? Nevertheless, the plaintiff’s disability is still a central fact in any court case involving the ADA. The ADA reads: The term “disability” means, with respect to an individual (A) a physical or mental impairment that substantially limits one or more major life activities of such individual; (B) a record of such an impairment; or (C) being regarded as having such an impairment If a person meets one of the three prongs of the definition of disability, he or she would be considered to have a disability under the ADA. The definition of disability has been litigated in the courts and the definition has been updated through legislation by Congress. The definition has been further developed and defined in the U.S. Code (the codification of federal laws) and the Code of Federal Regulations (the codification of rules published by the enforcement agencies such as the U.S. Equal Employment Opportunity Commission, or EEOC): Impairment • A physical impairment is any medical disorder, condition, disfigurement, or loss affecting a

body system, such as the neurological, digestive, reproductive, or cardiovascular system. • A mental impairment is any mental or psychological disorder, such as a developmental/ intellectual disability, organic brain disorder, specific learning disability, or emotional or mental illness. It’s not possible to list all the specific conditions that constitute physical or mental impairments, but the list is diverse and includes cancer, AIDS, paralysis, blindness or other visual impairments, deafness or other hearing impairments, asthma, epilepsy, heart disease, migraine, thyroid disorders, posttraumatic stress, bipolar disorder, depression, dyslexia, attention deficit/hyperactivity disorder (ADHD), speech impairments, cerebral palsy, muscular dystrophy, diabetes, loss of body parts, complications from pregnancy, and a history of alcoholism or substance abuse. It’s important to note that Title I of the ADA, which covers employment discrimination, stipulates that a person with a disability must be “otherwise qualified” for employment, and some disabilities remain inherently disqualifying – to state the obvious, a blind person is not “otherwise qualified” to drive a taxicab. Likewise, neither a person who is an alcoholic who is currently drinking and unable to perform the essential functions of the job nor a person

59 Members of The ADA Legacy Project, ADAPT, and other advocates participated in the

grand opening of The National Center for

Civil and Human Rights on June 23, 2014, in Atlanta, Georgia. The Center features

exhibits on the history of the disability rights movement and its impact on civil rights law

Photo courtesy of disABILITY LINK

in the United States and around the globe.

currently engaged in the illegal use of drugs is protected by the law. Title V of the ADA explicitly excludes certain conditions from the definition of “disability,” including sexual or gender identity, compulsive behavior disorders, or simple physical or personality traits. Likewise, temporary and nonchronic impairments that have little or no long-term impact – a bad case of the flu, a broken arm, a weight problem (with exceptions), concussion, or appendicitis – are generally not considered disabilities. Substantially Limited • Whether such an impairment substantially limits a major life activity is determined by whether a person is unable to perform, or is substantially limited in his or her ability to perform, a major life activity that most people can perform. Regulations issued by the EEOC include additional factors influencing the determination of substantial limitation, such as the conditions under which the person performs the activity; the manner in which the individual performs the major life activity; and/or the duration of time it takes the individual to perform the major life activity. The EEOC’s manual reads: “It is not the name of an impairment or a condition that determines

whether a person is protected by the ADA, but rather the effect of an impairment or condition on the life of a particular person.” Under the ADAAA, the term “substantially limited” is to be interpreted broadly in favor of coverage. Major Life Activity • Major life activities are defined as activities “most people can perform with little or no difficulty.” They include but are not limited to bathing, dressing, preparing a meal, using the restroom, reaching, walking, sleeping, eating, hearing, speaking, breathing, learning, thinking, communicating, and working. Under the ADAAA, major life activities were expanded to include conditions that are episodic or in remission. In addition, major life activities also include the operation of a major bodily function. This substantially increases the number of

people who will be able to identify at least one major life activity as being substantially limited. For example, a person with insulin-dependent diabetes will most likely be covered because endocrine system function is considered a major life activity; someone with post-traumatic stress disorder who experiences intermittent flashbacks to traumatic events is substantially limited in brain function and thinking. A Record of Such an Impairment In certain situations, a person who does not currently have a substantially limiting impairment may be considered to have a “disability” under the ADA. One of these situations involves a “record” of such an impairment – which can mean either that a person once did have, but no longer has, a substantially limiting impairment, or that a person was once wrongly classified as having such an impairment. A person who once experienced a diagnosis and

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61 underwent treatment for cancer cannot be refused employment on those grounds, for example, if he or she has recovered and is considered cancer free such that he or she is no longer experiencing any limitations in major life activities. Likewise, if a patient’s medical record contains a diagnosis of HIV that turned out to be false, he or she cannot be denied services on the basis of that diagnosis. Regarded as Having an Impairment Another circumstance in which a person may be covered under the ADA is when an individual has been subject to an action that is prohibited under the ADA because they have or are perceived to have a physical or mental impairment even if that impairment or perceived impairment does not limit a major life activity. For example, if an employer denies employment to a job applicant solely because the applicant has had back problems in the past without looking at whether he can safely perform the job, then the person is regarded as being limited in a major life activity. The ADA Titles The ADA is divided into five titles, or sections, that relate to distinct areas of public life: Title I: Employment Title I is designed to ensure people with disabilities have access to the same employment opportunities and benefits available to Americans without disabilities. It requires employers to provide qualified applicants or employees with “reasonable accommodations” – changes to the workplace that accommodate the people with disabilities without causing too much difficulty or expense (“undue hardship”). Private employers with 15 or more employees must comply

with this portion of the law. State and local government employers must comply with the employment provisions of the ADA regardless of the number of employees. The EEOC is the agency responsible for regulating and enforcing Title I. Complaints under Title I must be filed with the EEOC within 180 days of the date of the discrimination, or 300 days if the charge is filed with a designated state or local fair employment practice agency. Title II: State and Local Government Services This title prohibits “public entities” – programs, services, and activities administered by state and local governments – from discriminating on the basis of disability. Examples include but are not limited to public schools (including state- and locally funded post-secondary programs, colleges, and universities); health care, social services, and recreational facilities; and courts, polling places, and town meetings. When viewed in their entirety, all programs, services, and activities should be readily accessible to and useable by persons with disabilities. This includes all buildings and facilities that house or support programs and services being architecturally accessible, the provision of sign language interpreters and other communication aides and services, and the modification of policies and procedures to ensure that people with disabilities have equal access. For example, a city council may need to provide a sign language interpreter for a public meeting or a local park must modify their “No Dogs” policy to allow service animals into the park. The Civil Rights Division of the U.S. Department of Justice regulates and enforces Title II. Complaints must be filed within 180 days of the date of the discrimination;

complaints regarding public transit should be directed to the Federal Transit Administration of the U.S. Department of Transportation. Title III: Public Accommodations Title III essentially prohibits exclusion, segregation, or unequal treatment of individuals with disabilities by public accommodations that are privately owned, leased, or operated. There are 12 categories of public accommodations that are subject to this portion of the law. Places of public accommodation include a wide range of entities, such as restaurants, hotels, theaters, doctors’ offices, pharmacies, retail stores, museums, libraries, parks, private schools, and day care centers. Private clubs and religious organizations are exempt from the ADA’s Title III requirements. The law requires the removal of architectural barriers in buildings that were constructed prior to 1993 when it can be performed without much difficulty or expense, and compliance with the architectural standards for all new construction and alterations. In addition, it requires entities to ensure that their communication with the public, both written and verbal, be effective, which may require use of sign language interpreters, materials in large print or Braille, or other services necessary to ensure that their customers have access to information they provide. Further, covered entities must make reasonable modifications to their policies and procedures when serving people with disabilities, for example, allowing someone who does not drive because of a disability to use a state-issued ID instead of a driver’s license for identification. Title III is regulated and enforced by the Civil Rights Division of the U.S. Department of Justice. Complaints

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63 Then-Senate Foreign Relations

Committee Chairman Sen. John Kerry, D-Mass., center, gestures during a

news conference on Capitol Hill in

Washington, D.C., on Dec. 3, 2012,

to urge Senate approval of the U.N.

Convention on the Rights of Persons with Disabilities. Pictured, starting AP Photo/J. Scott Applewhite

second from left, are Rep. Jim Langevin, D-R.I.; Sen. Tom Harkin, D-Iowa; Sen. John McCain, R-Ariz.; Kerry; and

Senate Majority Whip Dick Durbin of Illinois. To date, the U.S. Senate has not ratified the Convention.

must be filed within 180 days of the date of the discrimination. Title IV: Telecommunications Title IV requires telecommunications companies to provide interstate and intrastate telecommunications relay services (TRS) that allow individuals with hearing and speech disabilities to communicate over the telephone. TRS enables callers with hearing and speech disabilities who use TTYs (teletypewriters, also known as TDDs) and voice callers to communicate with each other. The law requires companies to provide TRS 24 hours a day, seven days a week. This title also requires closed captioning of federally funded public service announcements that air on television. It is regulated by the Federal Communications Commission. Title V: Miscellaneous Provisions This title contains various provisions that describe ADA as a whole, including its relationship to other laws – such as the Rehabilitation Act and the National Historic Preservation Act – the development of technical assistance, the law’s impact on insurance providers and benefits, and issues

of coverage and immunity. Title V also specifies certain conditions and disorders that are explicitly not covered by the ADA. ADA and the World The George Bush Presidential Library and Museum refers to the ADA as “the world’s first comprehensive declaration of equality for people with disabilities.” Almost immediately after passage of the ADA, governments around the world began writing and enacting their own laws guaranteeing rights and access to disabled citizens. Among the first were Australia (1992), New Zealand (1993), Japan (1993 and 1994), the United Kingdom (1995 and 2006), and Germany (2002). In many cases, the principles and terminologies of these laws can be traced to those codified in the United States. For example, the United Kingdom’s laws mandate “reasonable adjustments” for people with disabilities in the physical environment and in the provision of services. The ADA’s definition of disability, its principle of “reasonable accommodation,” and its assertion of the rights of individuals with disabilities to education, health, transportation, and environmental access lie at the foundation of the world’s first international treaty on disability rights: The U.N.

Convention on the Rights of Persons with Disabilities, which was adopted in 2006 and signed by 159 countries. The treaty went into effect on May 3, 2008. To date, 151 nations have ratified the treaty. The U.S. ambassador to the United Nations signed the Convention in 2009, but the U.S. Senate has not ratified it yet. In December 2012, the most recent vote for ratification, it received 61 of the required 67 votes. Subsequent attempts to bring a vote to the Senate floor have been blocked. To Convention supporters in the United States and abroad, it might seem puzzling – and frustrating – that a treaty aimed at protecting the rights and dignity of people with disabilities through worldwide application of ADA principles is rejected by the legislature that enacted the ADA by a wide margin. The rhetoric offered up by senators in the minority has generally included vaguely worded concerns about relinquishing U.S. “sovereignty” to the United Nations – a concern rooted in misunderstanding, if not in disinformation. The Convention itself is an agreement to promote, protect, and ensure the full enjoyment of human rights by people with disabilities, and to ensure they enjoy full equality under the law. An “Optional Protocol,” or side agreement that can

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65 be signed separately from the Convention, grants individuals in countries that have signed it the right to petition a U.N. committee of disability experts about violations of the law after all national procedures have been exhausted. The United States has not signed the Optional Protocol. According to Judy Heumann, Special Advisor on International Disability Rights for the U.S. Department of State, the U.S. failure to ratify the treaty is a failure to reinforce and assert American leadership on disabilities rights. Even in the most developed countries, in Europe and in Asia, she said, where disability rights laws have been on the books for years, “their laws are typically weaker than our laws, in part because we have stronger enforcement provisions than exist in most other countries.” Disability law in Germany (a nation that has ratified the Convention), for example, requires a barrierfree environment in public buildings, but only requires optional “target agreements” for private construction, leaving an enormous swath of public life, such as shopping malls, inaccessible to the individuals with disabilities. U.S. participation in the Convention might provide a valuable tool for discussions of such provisions – and its influence could prove crucial, said Heumann, in nations where civil society and the concept of disability rights are just beginning to develop. “I think the United States has an important role to play in countries where civil society groups are interested in learning more about what needs

to be done to develop good legislation,” she said. Another important reason to ratify the Convention is that a growing number of Americans with disabilities, who’ve enjoyed increasing opportunities at home for decades, are interested in living, studying, and working abroad, where they now confront wildly varying degrees of protection and access – for example, a blind State Department employee, Heumann said, who recently served in a country that did not allow service dogs in public buildings. Among this group of people with disabilities, many of the nation’s 5.5 million veterans with disabilities already have served overseas – and Heumann, Secretary of State John Kerry, and others believe they should have the same rights abroad that they have under the ADA. In an opinion piece that appeared in USA Today in June 2013, Kerry recounted the experience of a wounded Afghanistan War veteran, a double amputee, who visited South Africa to watch the World Cup and encountered a different level of access than he had come to expect in the United States. The ADA, Kerry wrote, had “set the gold standard” for access and equal opportunity, and the Senate’s refusal to export that gold standard simply didn’t make sense. The U.N. disabilities treaty, wrote Kerry, “won’t change American laws one bit, alter the balance between the federal government and the states, or infringe on parental rights in the U.S. ... This treaty doesn’t change America. It’s about America changing the world.”n

Founding Sponsor of the ADA Legacy Project

shepherd.org REBUILDING LIVES AND ADVOCATING FOR 40 YEARS

The Policy The Harkin Harkin Institute for Public Policy and and Citizen Citizen Engagement

Senator Tom Tom Harkin Harkin changed changed the the civil civil rights Senator rights landscape landscape in in America, expanding expanding opportunities opportunities for for people America, people with with disabilities disabilities andstrengthening strengthening our our national national fabric. fabric. and Weare arebuilding building on on his his legacy. legacy. We The nonpartisan Harkin Institute for Public Policy and Citizen Engagement is focused on the future The nonpartisan Harkin Institute for Public Policy and Citizen Engagement is focused on the future of domestic and international disability policies and practices. The Harkin Institute will continue to of domestic and international disability policies and practices. The Harkin Institute will continue to engage national leaders, prominent academics, and the disability community in research, study, and engage national leaders, prominent academics, and the disability community in research, study, and dialogue to develop and implement good public policy on issues that affect persons with disabilities. dialogue to develop and implement good public policy on issues that affect persons with disabilities.

The The Harkin Harkin Institute Institute for for Public Public Policy Policy and and Citizen Citizen Engagement Engagement 2429 2429 University University Ave., Ave., Des Des Moines, Moines, Iowa Iowa 50311 50311 The Harkin Institute for Public Policy and Citizen Engagement 2429 University Ave., Des Moines, Iowa 50311 w www.drake.edu/harkininstitute e harkininstitute@drake.edu w www.drake.edu/harkininstitute e harkininstitute@drake.edu w www.drake.edu/harkininstitute e harkininstitute@drake.edu

Q&A

Sen. tom Harkin

emocratic Sen. Tom Harkin has represented Iowa in Congress for nearly 40 years, first winning election to the U.S. House in 1974, and securing a seat in the Senate in 1984. Since arriving to Congress, Harkin has championed critical legislation that improves lives. His signature legislative achievement, the Americans with Disabilities Act, protects the civil rights of more than 54 million Americans with physical and mental disabilities, changed the landscape of America by requiring buildings and transportation to be wheelchair accessible, and provided workplace accommodations for people with disabilities. In response to court rulings that challenged the ADA’s provisions and undermined the law’s intent in the years after its passage, Harkin worked with fellow lawmakers to pass the ADA Amendments Act of 2008 (ADAAA), a means of strengthening protections for the civil rights of Americans with disabilities. At press time (November 2014), Harkin was chairman of the Senate Health, Education, Labor, and Pensions (HELP) Committee and the Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies. He has been a member of the Agriculture Committee since his first term in Congress. The senator took time recently to answer some questions about working to pass the ADA and the ADAAA as well as his passion for securing equal access and equal opportunities for all Americans.

by Chuck Oldham

At the heart of the Americans with Disabilities Act was the goal to prohibit discrimination based on disability and to ensure equal access and opportunity. Equal Access, Equal Opportunity: When Sen. Ted Kennedy tapped you to craft legislation that became the Americans with Disabilities Act (ADA), was it because you were particularly passionate about the issues the bill was meant to remedy? Sen. Tom Harkin: Yes. When I first came to the Senate after the 1984 election, Sen. Kennedy wanted me on his education and health committee. I told him that I’d be honored to serve on the committee and I was grateful that he gave me the opportunity to chair the recently created disability subcommittee to pursue the reforms we needed to protect the rights of people with disabilities. And I have always appreciated this as an act of great generosity on his part. He already had an extensive record on disability issues, yet he let me take the lead. I wanted to take the lead because of my own family experience and the discrimination and low expectations I saw for my brother, who was deaf. Likewise, back in 1990, as chair of the HELP Committee, he could have insisted on managing the Americans with Disabilities Act. But he let me do it, despite the fact that I was still a freshman senator. He was an indispensable partner in my effort to pass the Americans with Disabilities Act in the Senate. Do you feel that your brother’s disability was an important incentive for you in putting together the legislation and fighting to get it approved?

Sen. Tom Harkin, D-Iowa, makes a

statement on the steps of the Capitol in September 2008, after the Americans with Disabilities Amendments Act passed both houses of Congress.

Yes. My brother Frank was my real inspiration behind all of my work in the House and the Senate on disability issues. He lost his hearing at an early age — and because of that, he was taken from our family at an early age, moved to a residential home clear across the state, and faced prejudice and discrimination on a regular basis. But he refused to accept the biases and stereotypes that society tried to impose on him. He fought for – and won – a life of dignity. His story is similar to that of millions of Americans with disabilities. I delivered a speech in American Sign Language on the Senate floor to support the Americans with Disabilities Act. I did it as a tribute to my brother Frank, and to other individuals who are deaf or hard of hearing.

What became the key aspects to the legislation as it was drafted, and who were your major allies in that effort? At the heart of the Americans with Disabilities Act was the goal to prohibit discrimination based on disability and to ensure equal access and opportunity. I worked very closely with people on both sides of the aisle — both in Congress and in the administration. Sen. Bob Dole was an indispensable ally. We received invaluable support from President George Herbert Walker Bush and key members of his administration, including White House counsel Boyden Gray and Attorney General Dick Thornburgh. And there were so many others – Justin Dart, Tony Coelho, Steny Hoyer, Steve Bartlett, advocates, other members of Congress and the administration – whose commitment and support were instrumental in helping get the ADA passed. Another great champion for Americans with disabilities was Edward Roberts. Paralyzed from the neck down, he became a leader in the movement that championed

71 the right of people with disabilities to lead independent lives. In 1962, he became the first severely disabled student to attend the University of California at Berkeley, and in 1972, he helped found the Berkeley Center for Independent Living. The Center for Independent Living helped to bring attention to the challenges faced by people with disabilities and furthered the momentum that led to the passage of the ADA. Did you find you had any unlikely allies in getting the legislation passed? As we worked toward final passage, we were glad to have strong bipartisan support from both Senators Ted Kennedy and Bob Dole as well as President George H. W. Bush and key members of his administration, including White House counsel Boyden Gray and Attorney General Dick Thornburgh. The final vote on the ADA, 91 to 6 in the Senate, sent a resounding message that this nation would no longer tolerate isolation, segregation, and second-class citizenship for people with disabilities. What do you remember about the day President George H. W. Bush signed the bill into law? The day President George H. W. Bush signed the Americans with Disabilities Act into law was one of the proudest days of my Senate career. I thought of my brother Frank, who was deaf, and who suffered terrible discrimination and exclusion, and I thought about the millions of other Americans with disabilities who face similar obstacles. I was deeply gratified that we could work in a bipartisan fashion to ensure that all Americans have the right to equal opportunity, full participation, independent living, and economic self-sufficiency.

Have citizens with disabilities contacted you over the years to tell you about what the law has done to improve their lives? I have been very fortunate to hear from many inspiring people with disabilities in Iowa and around the country. Each has faced their own challenges and many have shared with me the challenges they faced before we passed the Americans with Disabilities Act and how things have improved since then. For some, it’s the small things that we often take for granted like being able to go to a movie theater or restaurant that now has a ramp

these challenges, I worked with my colleagues in Congress to pass the ADA Amendments Act in 2008 to remedy this problem and restore workplace protections to every American with a disability. Passing the Americans with Disabilities Act was one of the most important things I have been able to do in Congress. We’ve made tremendous progress in helping to achieve the goals of the ADA: equality of opportunity, full participation in American society, independent living, and economic selfsufficiency. And while there is still more work to do, I am confident

Passing the Americans with Disabilities Act was one of the most important things I have been able to do in Congress. installed. For others, the ADA has opened the door to greater independence in their living situation and more opportunities for goodpaying and fulfilling jobs. Can you describe your reaction to the various court rulings on the ADA in the years following its passage? How did the ADA Amendments Act of 2008 recover, retain, and strengthen the original protections of the ADA? Like many other movements for equality, our work to end discrimination for Americans with disabilities is not complete. Indeed, since the ADA became law in 1990, a series of court decisions narrowed the category of who qualifies as an “individual with a disability,” contrary to congressional intent. By raising the threshold for an impairment to qualify as a disability, these court decisions deprived individuals of the discrimination protections Congress intended to provide. To address

that the promise of the ADA will be met because both in Congress and around the country, millions of Americans will continue to raise their voices and advance this important work. And we have another task to accomplish now: ratifying the U.N. treaty on disabilities — the Convention for the Rights of Persons with Disabilities (CRPD). The treaty is based on the ADA as well as other U.S. laws such as the Individuals with Disabilities Education Act and the Rehabilitation Act. The treaty has been signed by over 140 countries — but the U.S. has not ratified it yet. Ratifying it would allow the U.S. to help all those countries that have already ratified the treaty to implement the principles and standards of our ADA, the strongest civil rights law for people with disabilities in the world. The fight for civil rights for people continues and passage of the CRPD is the next step in spreading civil rights for people with disabilities across the globe. n

Shifting the Paradigm Employees, Employment, and Employers Story by eric Tegler

eople with disabilities have made considerable progress in integrating with society’s mainstream since the passage of the Americans with Disabilities Act (ADA). Yet in one key area, central to the act itself, they remain too far behind. For a variety of reasons, too few Americans with disabilities work. Early in 2014, the U.S. Labor Department reported that the unemployment rate for individuals with disabilities was approximately 14 percent – more than twice the unemployment rate for Americans without disabilities – and that the average number of people with disabilities with a job is the lowest in at least five years. While the broader labor force has struggled to recover from the Great Recession, workers with disabilities, who were affected by job loss disproportionately, have found it even more difficult. The meaning of relatively high rates of unemployment in the population of those with disabilities goes beyond their financial condition and independence. Only by successfully bringing greater numbers of workers with disabilities into the workforce can Americans truly begin to change the paradigm and perception of disability. Kathy Martinez and Anil Lewis recognize the implications of broader participation of the

disability community in the workforce. Both have made boosting employment for individuals with disabilities part of their career focus, and as blind people, both know the challenges of disability firsthand. Martinez is Assistant Secretary of Labor for Disability Employment Policy at the U.S. Department of Labor, where she oversees strategic planning and performance management for a number of policy initiatives to increase employment opportunities for people with disabilities. She’s also a former executive director of the World Institute on Disability, where she successfully managed initiatives to increase employment opportunities for Latinos with disabilities in the United States. Lewis is executive director of the Jernigan Institute at the National Federation of the Blind, where he leads work in education resources, Braille literacy, research, and technology programs. He previously worked in the private sector as a job development/placement specialist, helping clients with and without disabilities develop employment skills and get jobs. Lewis was also chairman of the board of directors of the Disability Law and Policy Center of Georgia, influencing and enforcing disability policy. We put a similar set of questions to Martinez and Lewis centering on the ADA’s impact on employment

for the disability community, the definition of disability for employment purposes, attitudes among employers and among employees with disabilities, the benefits of greater workforce participation, and the potential talent that unemployed individuals with disability represent. We began by asking what the ADA has meant for the employment prospects of Americans with disabilities and how it has encouraged employers to seek and hire them. “By prohibiting discrimination, the ADA opens more doors for people with disabilities,” Martinez said. “It has a cyclical effect, because it helps expose more people to the skills and talents we have to offer. Interestingly, I am sometimes asked by employers what they can do to be more inclusive of people with disabilities at their companies. They bring up things like policies and technology and accommodations. And those things all matter, certainly. “But, my response is much simpler: ‘Hire people with disabilities – actually include them!’ Nothing shatters misconceptions more than exposure. And by prohibiting employers from discrimination on the basis of disability, the ADA does this on a macro-level. Each time it assists a person with a disability to get his or her foot in the door,

U.S. Air Force photo by Civ/Nan Wylie

it helps more and more people without disabilities realize that we’re not so different after all. It has a positive, multiplying effect. “It’s also important to mention that there are some laws that do require some employers, notably federal contractors, to take affirmative action, to proactively recruit, hire, and advance qualified people with disabilities. The requirements of one of those, Section 503 of the Rehabilitation Act of 1973, were significantly strengthened this year [2014]. When it was signed in 1990, the ADA built upon the spirit of Section 503, and now the new rules are building upon the spirit of the ADA.”

Beverly Redic employs JAWS (Job Access

with Speech), an interactive screen reader with text-to-speech capabilities, to help a customer at the U.S. Air Force Telephone

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Blind and Solano Diversified Services and

aims to provide employment opportunities

for people with disabilities; each of the call center employees has a physical disability.

For Lewis, the significance of the ADA with respect to encouraging employment of people with disabilities goes beyond its legal detail.

“The most important impact the ADA has had on employment is not really in the language of the act, rather it is in the spirit of the ADA. It was a piece of legislation that officially asserted that people with disabilities have capacity [to be productive] and the right to be fully integrated into society. That particular affirmation was a landmark, in my opinion. The problem [previously] was the public mind-set that people with disabilities did not have that capacity.” Lewis also points out that in its early days, the employment provisions of the act were often not enthusiastically embraced.

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75 “In the beginning, the ADA was [euphemistically] called the ‘Employment Lawyers’ Retirement Act.’ In my experience as an employment counselor, in the early years of the ADA, many employers, rather than trying to meet the spirit of the act, merely tried to meet their requirements. That’s often a default when you look at public policy. As a counselor, I would use the ADA as the ‘stick’ since it was already interpreted in that fashion, but I would never introduce that into the discussion. If there was a situation in which I had to assert that [an employer] was required by the ADA to do something, I considered that to be somewhat of a failure in my effort to try to create an employment opportunity for a person with a disability.” As noted, those opportunities are still in too short supply. Regarding the recently released Labor Department statistics on unemployment among Americans with disabilities, we asked why the employment picture looked disappointing. “Yes, even as the overall job situation appears to be improving, the monthly report from the Bureau of Labor Statistics has sometimes shown unemployment among Americans with disabilities to be inching up,” Martinez acknowledged. “That is certainly not what we want to see. Equally disturbing is that sometimes these monthly numbers suggest that some people with disabilities have ceased seeking work altogether. We can’t make generalizations from just a few months’ worth of data, though. We in the federal government actually only began tracking employment among people with disabilities in October 2008, and there is not really enough data yet to establish with certainty seasonal trends. So we may not be getting a complete story yet. “That said, there is no doubt that the economy has impacted people with disabilities disproportionately.

This may be due to the ‘last hired, first fired’ phenomenon. This claim hasn’t been proved to my knowledge, but studies have shown that people with disabilities are more likely than workers without disabilities to have short-term jobs or contract work and generally perceive their jobs as less than secure, partly because they are often employed in lower-level positions. My sense is that any rise in unemployment is not due to negative attitudinal shifts. Within individual companies and even industries, there has been marked improvement. Technology has been one factor in helping to level the playing field, but there are others, of course.” The ADA may in fact have improved the employment prospects for job seekers with disabilities, Lewis opines, but changing expectations within the community may be affecting the numbers. “I’d venture to say that since the act was passed, the unemployment rate for people with disabilities has improved. It’s just that more individuals with disabilities who previously thought they were unemployable now have entered into that particular database.” Lewis added that the number of Americans with disabilities, previously estimated at 54 million, has recently updated to 58 million and asked, “Are there 4 million more people with disabilities or is it that people are now more comfortable aligning themselves with that population?” The ADA defines disability as “a physical or mental impairment that severely restricts a major life activity.” Is that a finite enough definition? we asked, and does its vagueness contribute to an association with Social Security Disability Insurance (SSDI)? SSDI payments are in the news as a record number of Americans (10.9 million) now receive them.

“That’s an excellent question,” Martinez said. “There are varying definitions of disability for different purposes, including the ADA, SSI [Supplemental Security Income], and SSDI and other benefit programs. At ODEP [Office of Disability Employment Policy], we do not have any enforcement responsibilities, nor do we run any benefit programs. So we are less concerned with definitions and labels, which in many ways is very liberating. “In my mind, it is only perception that limits opportunities for people with disabilities to train for and obtain and succeed in employment. Yes, some of these people may then turn to federal disability benefits as a safety net. Our goal at ODEP is workforce inclusion, for all people. We think America works best when everybody works – including people with disabilities, whether those disabilities are obvious, like mine, or not obvious at all.” Lewis thinks the correlation between ADA and SSDI definitions of disability is possibly flawed because the ADA definition is much wider. “There is language in the ADA that says that if a person is ‘perceived’ to have a disability, then they are covered under the act. Social Security is by no means going to offer someone benefits because they’re perceived to have a disability. I think the increase in the SSDI numbers is a result of the economy and of the fact that there’s a body of people specializing in this. You’ve seen the TV commercials, lawyers specializing in getting people disability benefits.” However, individuals with disabilities may actually demonstrate greater ambition to work than their mainstream counterparts. There is a population of Americans working for less than the minimum wage, Lewis points out. The little-known Fair Labor Standards Act of 1938 includes a provision that allows the secre-

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77 Mike Groleau stocks soft drinks in the

cooler at the Dash Cafe inside the Scioto

Downs Racino in Columbus, Ohio, on April 9, 2014. Groleau is one of nine people with developmental disabilities who

were hired at Scioto Downs as part of the state and Pickaway County’s push to get

workers out of sheltered workshops that pay workers with disabilities less than

AP Photo/The Columbus Dispatch, Eamon Queeney

minimum wage and into community jobs.

tary of labor to grant special wage certificates to entities that provide employment to workers with disabilities, permitting them to pay their disabled workers at rates that are lower than the federal minimum wage. An overwhelming number of people in this category have developmental or cognitive disabilities. “People would assume that this is an affirmation that they just can’t be productive,” Lewis said. “Back in the 1960s and ’70s, black people weren’t lawyers and doctors, not in a big way, but that evolved because the common understanding about those people evolved as it is evolving within those with disabilities themselves and society as a whole.” This evolving common understanding paired with advancements in technology is giving the workforce of people with disabilities new opportunities, but it demands new

expectations, Lewis and Martinez agree: “In the current climate, everyone is putting emphasis on the employer and the employer’s obligations. I think we’re not doing enough to challenge the individual with the disability to meet their responsibility as well,” Lewis asserted. “At the National Federation of the Blind, that’s what we focus on – trying to empower the blind person with a good concept of themselves, self-confidence, the ability to problem-solve. When they go to an employer, they’re able to sell themselves to that employer. Expecting the employer to be totally responsible for the opportunity is flawed, I think.” “I recently wrote a blog post about financial literacy for people with disabilities,” Martinez said. “It was in response to a report released by the National Disability Institute showing

that, despite the ADA being signed into law 24 years ago, people with disabilities remain significantly less financially stable than those without. In that blog post, I recounted how, when I was growing up, I used to help my mom tally up the monthly bills. I loved math as a child, so it was a fun way to contribute. But, as I grew older, I found out that I was the exception, not the norm. “And you know why? Many people with disabilities, especially those born with them, are simply not expected to work and thus have money to manage. These issues are all part of a larger, systemic problem, the root of which is expectation, or actually lack thereof. Youth with disabilities, like all youth, must grow up expecting to work and succeed, and parents, teachers, and all other adults of influence in their lives must reinforce this expectation at every turn. Yes, the right training and educational opportunities must be there, but really, the key ingredient is high expectations.” Shaping expectations on both sides of the employment equation could lie in a different appreciation of the capabilities of people with disabilities. Albert Einstein, for example, had autism. As Martinez and Lewis know personally, individuals with differing levels of physical/mental impairment are forced to solve problems differently and thus often produce different

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79 Le’Ron Jackson, a self-advocate with

Disability Rights Mississippi, right, waits

to speak about the need for increased job opportunities for people with disabilities during a news conference at the state

capitol in Jackson, Mississippi, on Jan.

14, 2014. Gov. Phil Bryant, center, told

reporters he has issued an executive order for all state agencies to collaborate in

trying to increase job opportunities for

people with disabilities. Bryant, legislators,

and advocates for the disability community are teaming to try to create more job AP Photo/Rogelio V. Solis

opportunities for those with disabilities.

solutions. Is this aspect of disability something that potential employers are missing? we asked. Are there identifiable/quantifiable ways to leverage the skills/capacities of differently abled people to bottomline advantage? “Yes!” Martinez enthused. “There is a general principle at work here, and it has to do with the value of multiple and diverse perspectives. Research tells us that groups outperform individuals – even brilliant individuals – working independently. Even further, groups representing a range of perspectives outperform those with superior, but similar, skill sets. So by fostering a corporate culture respectful of individual differences, including disabilities, businesses benefit from varied approaches to confronting challenges and achieving success. “In his book The Difference: How the Power of Diversity Creates Better Groups, Firms, Schools, and Societies, University of Michigan researcher Scott Page summarized this principle about as succinctly as possible: ‘Diversity trumps ability.’ He then goes on to illustrate how employee diversity creates higher-performing organizations.

Today more than ever, businesses need people with the ability to adapt to different situations and circumstances. They need people who think divergently. And perhaps more than any other group, people with disabilities are skilled at this. It’s second nature to us.” “I think we’re entering into an era of enlightenment around recognition of this,” Lewis said. “As you shift the paradigm away from a charity model, you start thinking, ‘Here’s a person with a disability – let’s see what capacity they have to help me increase my bottom line, not to make me feel better by hiring them.’ You will find that some of those disabilities, especially within autism, confer a skill set that actually increases an individual’s productivity in a variety of different workplaces.” Improving the employment picture for the disability community isn’t just a moral and societal nicety. It will be crucial to help America meet its economic and public budgetary goals in years to come. “The financial benefits [of greater participation in the workforce by people with disabilities] should be obvious,” Martinez stressed. “There are people out there on

public benefits – that is, taxpayerfunded benefits – who would prefer to be paying taxes into the system. That’s not something you hear very often, is it? They want to work. They want to contribute. And they have the skills and talents to do so. Each time a person with a disability is given the opportunity to contribute those skills and talents in a meaningful way, in an integrated employment setting, there is a decrease in reliance on public funds. So, there is an obvious economic benefit. But even further, when all people who want to work can work, we renew and expand the very ideals upon which our nation was founded – those of opportunity and selfdetermination.” Lewis says that increasing the number of individuals with disabilities at work is simple financial common sense. “If you can take someone who’s traditionally been a public beneficiary, a burden on the public dollar, and make them a fuller taxpaying participant in society – most people with disabilities that I’ve encountered are happy to accept this – then we all win.” n

THE BUILT ENVIRONMENT: BEYOND THE ADA Story by Craig Collins

efore he was a 50-year veteran of the disability movement, an executive, and a board member, John Kemp was, among other things, a kid in a wheelchair. Kemp, president and CEO of The Viscardi Center, a nonprofit network that provides lifespan services and advocacy for people with disabilities, was born without lower arms or legs, and when he was younger it was difficult to plan outings. He never knew whether he’d be able to enter the building he wanted to visit: Most other people lived, literally, on a higher plane, and though it was a difference of only a few inches, it might as well have been a mile. “We always did a drive-by,” he said. “That’s how we learned whether we could get into a place. We’d either call someone who’d been there, or we’d drive by it. Prior to 1990, we had no expectation of accessibility when we traveled or moved about our communities.” Of all the obstacles confronted by people with disabilities in society, one of the most immediately conspicuous is the inability to simply move around: to access a world designed and built by other people. It was one of the first obstacles to be addressed amid the disability rights movement; in 1961, the American National Standards Institute (ANSI), the nonprofit organization that

oversees the development of voluntary consensus standards, created the first set of guidelines to ensure that individuals with disabilities would be able to enter and use public facilities. In 1968, Congress made these standards mandatory for federal facilities with the Architectural Barriers Act (ABA), the first federal effort to ensure access to the built environment. The ABA’s enforcement provisions were weak, and Section 502 of the Rehabilitation Act of 1973 was, in part, an attempt to strengthen them by creating an independent board to take charge of designing and enforcing accessibility standards. As groundbreaking as they were, the Rehabilitation Act’s standards applied only to facilities owned, leased, or funded by the federal government. The results, said Kemp, were underwhelming. “A study of that law showed that almost 90 percent of the buildings failed to comply with the Architectural Barriers Act and Section 502,” he said. “So wherever we went, we found hotels that had barriers everywhere, restaurants with barriers everywhere. People were literally isolated, and limited in what they could do.” The story of America’s disability rights movement is full of grim ironies that perfectly illustrate this point: As activists with disabilities became more outspoken about

their lack of access, authorities often encountered – as if for the first time – the difficulties they faced every day. Several of the activists arrested and sentenced to probation for staging a protest in the U.S. Capitol Rotunda in March 1990 to persuade House leaders to vote the ADA out of committee and bring it to the floor found themselves unable to report to their parole hearing, because the office, administered by the Superior Court of the District of Columbia, had no wheelchair ramp. The court officer had to meet with the activists outside. Titles II and III of the ADA restate and expand the federal mandate for access. Title III’s general rule, which mandates equal access to public accommodations, is stated with forceful eloquence: “No individual shall be discriminated against on the basis of disability in the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of any place of public accommodation by any person who owns, leases (or leases to), or operates a place of public accommodation.” The Expectation of Access A quarter-century later, American society is undeniably more accommodating, says Kemp. “The passage of the ADA, the changing of transportation systems, real enforcement of the building code, the expansion

Tom Olin Photography

of coverage to include smaller businesses, the effort to make sure people understand what public accommodation is, and where and how they can comply – it has changed things,” he said. “We’ve gone from the expectation of inaccessibility to an expectation of accessibility. It’s made a huge difference in our lives.” According to Catherine Kudlick, a professor of history and director of the Paul K. Longmore Institute on Disability at San Francisco State University, the ADA’s physical access provisions have also transformed the greater society. “At San Francisco State, someone using a wheelchair expects to be able to enter any building and even find an accessible restroom. It’s presumed – though not 100 percent certain – that basic things like the elevators will work,” she said. These physical alterations – such as the simple curb cuts that allow wheelchair users onto sidewalks – have done nothing less than open up a world that had been closed off to millions of Americans. The ADA’s

Protesters in Los Angeles, California, in the mid-1980s break a curb to demonstrate

the inaccessibility of the built environment.

physical access provisions have created arguably the most accommodating civil society in the world. And yet these changes in the built environment have also exposed a yawning gap between the principle of accommodation – a task undertaken with varying degrees of generosity, if not with downright resentment – and the spirit of inclusivity the ADA’s champions have hoped America would embrace. In what he calls the “second era” of physical access, Kemp said, “We can get into buildings. We’re just not respected or included.” It remains impossible to legislate people’s attitudes, and there’s a seeming disconnect between the ADA’s aspiration to “full and equal enjoyment” and the rules and regulations – most recently spelled out in the Department of Justice’s 2010 Standards for Accessible Design, a

279-page document – that provide the template for pursuing that ideal. It’s another grim irony: In order to regulate and enforce access to the physical world, it’s necessary to specify what that means. Architects and designers of the built environment – and their clients – must learn minimum and maximum slopes, heights, widths, depths, spacings, diameters, and elevations. The results of their efforts, says Kudlick, often reveal that they might be missing the point. “The requirements don’t specify that people should be going through the front door, and not the back door, to get into a restaurant,” she said. “So maybe they’ll build a ramp into the back door of a restaurant, and somebody in a wheelchair goes past all the garbage cans and the kitchen and the toilets to get into the restaurant. Yes, they can technically get in, and yes, that was enabled by the ADA. But it’s two different doors. It’s a double standard.” This new world, this second era, consists of mandatory accommodations: curb cuts, grab bars,

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83 While physical access provisions of the Americans with Disabilities Act have

improved accessibility for people with

disabilities, advocates would like to see

architects, designers, and builders embrace the spirit of inclusivity in the ADA, rather than simply comply with the law.

Braille-marked elevator buttons, bumpy transition strips, and wheelchair lifts, many of them tacked on to existing facilities or conveyances. All of them are necessary, and yet each of them, by itself, can’t help but leave people wanting more. To many, the way accommodations are applied to America’s built environment seems a failure of the imagination, a failure to embrace the spirit of the ADA. But to Kemp, ever the optimist, it merely marks the threshold to a third era: “I think we’re at another pivotal point here,” he said. “I think in the next 25 years we’re going to see ourselves having an expectation of inclusion.” The Letter versus the Spirit of the ADA: Creating “Full and Equal Enjoyment” The difference between these second and third eras is the difference between “accessible design” – a process that focuses on accommodating and correcting for specific barriers – and “universal design,” a term coined by architect Ronald Mace, who founded the Center for Universal Design at North Carolina State University in 1989. Universal design, which aims to serve every imaginable user of a building or a facility, acknowledges an important fact that many Americans prefer to ignore: At some point most of us,

and especially if we’re fortunate enough to live to old age, will be disabled – if not by a physical limitation, by something as simple as the need to carry a heavy package, or to push a baby stroller. If this seems a subtle difference in worldview, it’s not: One view is prescriptive, the other visionary. Many professionals responsible for creating the built environment remain fixated on requirements. Sarah Boehm, an interior designer and assistant professor at Florida International University’s College of Architecture + The Arts, has explored how design professionals approach ADA requirements. She conducted a pilot survey among several Florida designers in 2008 that revealed a view of the ADA as prescriptive, punitive, and also, paradoxically, too vague and open to interpretation. She recently conducted a follow-up survey of more than 300 designers, and while she hasn’t finished compiling the results, she has discovered the same overall attitude of resignation about the law, which she summed up as: “We’re doing what we’re supposed to.” In their academic writing, Boehm and co-author Jean Sherman, director of the Center on Aging and Disabilities at the University of Miami’s Miller School of Medicine, offer several recommendations for changing this thinking and for

cultivating understanding of the comprehensive spirit of the ADA. They’ve also pointed out that our current thinking about “access” continues to be narrowly focused: When we think about transportation access, for example, we think about wheelchair lifts. But that thinking fails to account for entire classes of people with disabilities, such as people who are cognitively or intellectually disabled (ID). A brief consideration of the barriers people with ID face in navigating a public transit system – complicated routing and scheduling, transfers, unfamiliar destinations – opens up exciting possibilities in urban design. A transit system could be designed to interface with a GPS-enabled navigational aid, for example, or a new “smart environment” could be programmed to offer cues and prompts. Even for those limited strictly by mobility, there can be an obvious difference between “accessible” and “universal” design, says Boehm, who specializes in design for the hospitality industry. The amended ADA, she points out, requires access to swimming pools, and around the country, more pools are being equipped with wheelchair lifts. That may be the only alternative for an existing pool, Boehm says, but a better solution for a newly constructed pool would be a “zero depth entry” or “beach entry,” where the deck at one end simply slopes into the water at a gentle angle. “Nobody’s saying it’s specifically for disabled people to get into the pool,” she said. “A lift is giving us

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accessibility, applying the law. But integration of accessibility into the design gives us a better result for everyone.” A zero depth entry pool would take up more space – and cost more – than a traditional pool. But as Boehm points out, these trade-offs are made constantly in the built environment. “In the end, mothers can wade into the pool with their disabled children. So you’re serving that client,” she said. “You’re serving the older person who may be not as mobile, who may have an easier time accessing the pool in that way.” For the past several years, one of the leading practitioners of universal design has been Christopher Downey, a San Francisco Bay Area architect and consultant who began his career in 1984. He first truly saw the world from the perspective of a person with disabilities in the 1980s, he says, when an undergraduate classmate who used a wheelchair presented a slideshow. “I was struck by how weird the slideshow was,” Downey recalled. “I couldn’t figure out what was so odd about it. But then it occurred

A digital sign displays transit information at

the Portland Transit Mall, Portland, Oregon’s downtown transit hub. Such displays, when paired with audio announcements, provide helpful information for all transit users –

those with disabilities and those without. Universal design aims to serve every

imaginable user of a building or facility.

to me: His camera lens was about 3 feet below my own frame of reference. So it really made me think: Accessibility’s not just about how you engage the space, or how you get through the space. It’s also about the experience. Can you enjoy it? Is it meaningful and effective for you?” You can tell, if you watch one of Downey’s TED talks online, or if you sit in on one of the courses he teaches about the ADA or universal design at the University of California-Berkeley, that he’s a thoughtful, compassionate person for whom access has always been an important issue. You’ll also notice that he’s blind: He lost his sight suddenly in 2008, after surgery to remove a benign tumor near his optic nerve.

Rather than end his career, Downey’s blindness sent it in new directions: Since landing his first work as a blind architect, a 2009 consultation with the designers of a new polytrauma and blind rehabilitation center for the Palo Alto Veterans Affairs Medical Center, he’s worked on several other projects, including the Duke Eye Center in Durham, North Carolina, and San Francisco’s 1.5-million-square-foot Transbay Transit Terminal. Too often, Downey says, architects think of ADA requirements as the maximum they need to do to comply with the law, when in fact they’re a minimum level of accommodation. “It’s a really profound difference,” he said, “especially when you’re designing a building that’s specifically for the blind and visually impaired. For people with disabilities of all types, there’s so much more that needs to be done.” After losing his sight, the first project on which Downey was lead architect was the new Independent Living Resource Center (ILRC) near the heart of San Francisco’s Financial District. Founded in 1976, it was one of the nation’s first independent living centers, but it had been housed for more than a decade on the third floor of a brick building on Mission Street, where the elevator often broke down and left wheelchair users stranded. Downey wanted to make the new building enjoyable and useful to as many people as possible. Its original design, when he came aboard, isolated people in interior work spaces, with no views or daylight penetrating beyond the entry. One of his first decisions was to open up the interior – not only to bring in light and views, but also to show people with disabilities working inside. He lowered the long windowsill fronting the street to a height many criticized as too far: “But we did that so people working

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87 Left: A visitor uses an RFID access card with a

custom-built widescreen Schindler PORT Technology terminal to enter the new Independent

Living Resource Center (ILRC) in San Francisco. The ILRC building was designed to accom-

modate a variety of abilities. Bottom left: ILRC Executive Director Jessie Lenz provides an

interactive tour of the facility’s new Schindler PORT Technology system to members of the

Schindler Elevator Corporation

local community.

in the back, in wheelchairs, could see out the front to the street,” he said, “and also so they’d be seen. If you look in, you’ll see more than just the top of someone’s head. You’ll see a person at work in a wheelchair.” The ILRC designed by Downey opened its doors in July 2014, and is still evolving to accommodate a variety of abilities. It’s an expansive space, and a tactile, high-contrast environment for the blind and visually impaired. The polished concrete floor of the common space gives way to

cork flooring in the workspaces, with strategically placed transition strips marking the change so that someone can easily navigate using a white cane. The ILRC also uses smart building technology: It features the first U.S. installation of Schindler Elevator Corporation’s new PORT Technology, an access and security system that uses touchscreens and radio-frequency identification (RFID) badges to allow people in and out of offices and work spaces. Developers are working on several adaptations:

The touchscreen “doorbells,” which activate a chime to announce to a blind person the arrival of a visitor into a room, may be programmed to deliver a visible flash to make the same announcement to a deaf person. A smartphone application will someday allow users to alert the system and open a series of doors along a route in advance. Like other people who have lost their sight, Downey has been surprised by the extent to which his other senses help him to navigate the world. Likewise, after losing his sight, he’s discovering a more expansive professional vision: When he teaches at Berkeley or speaks to groups, he says, he runs into the “compliance” mind-set all the time, and gently pushes back against this way of looking at the ADA. The law is really a social pact, he says, and architects and designers are the gatekeepers to a more inclusive world. “It’s a wonderful opportunity we have, to create a positive environment,” he said. “If you think about it that way, it gives you a much better understanding of why all those regulations exist. The point of it isn’t merely to achieve those minimum clearances. The point of it is to include people, and to create a built environment for as many people, with the broadest and most diverse range of abilities, as we possibly can.” n

Access to Public Transportation story By Janine Bertram Kemp

ack of access to transportation has always been an issue for people with disabilities, dramatically reducing opportunities for employment, recreation, education, and inclusion in society. In the 1970s and 1980s, transportation became a flashpoint for the disability community to gather, discuss, and organize, city by city, area by area, as well as nationally. The fight for lifts on buses was gaining in the disability community. ADAPT, the grassroots activist group, was formed in 1983 to obtain a national policy on accessible transit. Thanks to its efforts and those of others who joined them, lifts on all new buses became mandated 30 days after the Americans with Disabilities Act (ADA) was signed. Back in 1970, the Urban Mass Transit Act (UMTA) mandated lifts on all new buses so that people with mobility disabilities could have access to public transit. However, like many legislative mandates, it was not enforced, and lifts on buses encountered significant pushback from city transit authorities as well as the American Public Transit Association (APTA). In the late 1970s and 1980s, access to all forms of public transportation became a demand that was widespread among people with disabilities in

the United States. It was an issue that helped galvanize disparate disability organizations into an enduring movement for civil rights. This happened in part because of continuous, strong resistance from APTA and transit authorities in individual urban areas. From the beginning, people with disabilities understood that the need for transit access was a priority. For those without the significant financial resources to purchase a personal accessible vehicle (at the time, the cost of lift or ramp modifications could run between $15,000 and $30,000), public buses were the only means available to get to work and recreational activities. While the general public and some transit officials viewed those with significant disabilities as only needing transit to medical appointments, the disability community knew that there would never be societal integration without the â&#x20AC;&#x153;right to ride to workâ&#x20AC;? and other activities that were a part of daily human life. While the strongest transit industry resistance centered around access for people with mobility impairments, transit officials also resisted access for people who were blind/low vision, people who were deaf, and those with intellectual disabilities. The transit industry offered paratransit as the alternative to accessible public buses and cited cost as a reason they could

not purchase buses with lifts and make fixed-route buses accessible. Paratransit systems offered door-to-door service in vans or small buses. Appointments for rides had to be made at least 24 hours in advance and many systems limited the availability of the number of rides per week or month. Paratransit rides were notoriously late or no-shows and could not be relied upon for entertainment use such as sporting events or restaurant dining, let alone for employment and medical appointments. It was not cost that motivated a recalcitrant transit system, since surveys showed a paratransit ride cost the system approximately $25.00 compared to $1.25 for fixed-route usage (1984 costs, when the cost was amortized over the life of the bus, as was the industry standard for other cost computations). It appeared that the transit industry simply did not want to cope with change. Yet changes were indeed on the horizon, and the laws that mandated them were being passed. In 1968, the state of California passed legislation mandating that BART (Bay Area Rapid Transit) be accessible to people with disabilities. Amid mounting pressure, the Washington Metro system was sued successfully in 1972 to

Tom Olin Photography

incorporate accessibility in their plans. After UMTA required lifts on buses, transit systems should have been moving rapidly toward access for all people with disabilities since, in 1973, Section 504 of the Rehabilitation Act was passed by the U.S. Congress. Section 504 required that any recipient of federal funds had to make all programs and services accessible to people with disabilities. The transit industry received hundreds of millions in federal dollars. Sadly for people with disabilities, federal regulations for the Rehabilitation Act were not issued for many years and there were no enforcement efforts on the part of the Federal Transit Administration, which was most often sympathetic to APTA rather than riders. The Surface Transportation Act set the accessibility bar very low in 1982 when it mandated that transit

Disability rights activists, including

members of ADAPT, stage a protest in Los Angeles, California, to bring attention to the inaccessibility of public transit and over-the-road coach companies.

authorities need not spend more than 3.5 percent of their budgets serving customers with disabilities. The act specified that a transit agency needed either to operate a “van system” or put lifts on buses. Many in the disability community saw the van system option as a parallel to “separate but equal” schools from the African-American civil rights movement. “Separate is never equal,” explained Mark Johnson of the ADA Legacy Project and a founding member of ADAPT. For example, the Surface Transportation Act

set an easy bar for transit industry compliance with federal law. If a transit system spent 3.5 percent (called the 3 percent rule) of its budget on access for patrons with disabilities on either paratransit or fixed routes, then that system was within compliance. Yet, this did not begin to provide access for riders with disabilities. A Department of Transportation (DOT) study showed that cities of fewer than 1 million people, which are at least 90 percent of the cities, could not meet the minimum service criteria for the handicapped for less than the 3 percent spending limits. According to Johnson, that 3 percent rule meant that many cities did not have to extend much service to riders with disabilities. “This came to be known as ‘local option,’ and it meant that local transportation agencies could

The Washington Metropolitan Area Transit Authority is proud to celebrate the 25th Anniversary of the Americans with Disabilities Act.

Every day, Metrorail, Metrobus and MetroAccess provide accessible transportation options to thousands of people with disabilities in the National Capital area. We recognize, support and further the ADA’s goal of prohibiting discrimination based on disability.

At the University of Michigan, making and keeping information accessible is one of our most important goals.

What good is information if you can’t get at it?

Michigan was one of the first colleges in the nation to open an office for students with disabilities—in 1974, just five months after Congress passed the Vocational Rehabilitation Act. Today, the U-M boasts: • a digital collection of 11 million+ digitized books; • adaptive technologies at 10 major U-M libraries; • the U-M Council for Disability Concerns, which addresses disability issues on campus and in the community; • the Services for Students with Disabilities Office, providing resources, scholarships, and coaching and mentoring. We’re proud of how far we’ve come in the last 40 years, and we’re looking forward to the next 40!

umich.edu

opt to provide only segregated paratransit for customers with disabilities, as the majority so chose,” Johnson explained.

A rider in Los Angeles, California, uses a ramp

ADAPT Takes Direct Action

of people within the disability community,

While accessible public transportation was one of many issues on the plate for disability leadership in Washington, D.C., no group had elevated it to their No. 1 priority. Paralyzed Veterans of America (PVA) under Gordon Mansfield’s leadership and Eastern Paralyzed Veterans Association (EPVA) had consistently lobbied for accessible buses, trains, and airplanes. The ENDependence Center of Northern Virginia (ECNV), then led by Sharon Mistler, always had representatives negotiating accessible transit regulations. However, it was not until a grassroots group out of Denver, Colorado, began blocking buses

today, with lifts on buses that travel fixed

to board an LA Metro bus operated by Los

Angeles County Metropolitan Transportation Authority. Thanks to the Americans with

Disabilities Act and the persistent efforts

public transportation is much more accessible routes rather than reliance on paratransit to serve those with disabilities.

that accessible public transit became a leading issue of the disability rights movement. After meeting for two years, a Denver group later called “the Gang of 19” was ready to make its move. In July 1978, local transit officials had placed an order for new buses without lifts. The Gang of 19 blocked city buses on the corner of Broadway and Colfax. Subsequently the city of Denver

began ordering lifts on all new buses. Five years later in 1983, ADAPT was formed. The name then stood for Americans Disabled for Accessible Public Transit. It was an organization with a single mission: accessible public transportation and lifts on buses, in particular. Led by Wade Blank, a Presbyterian minister, ADAPT used negotiation, litigation, and direct action to achieve its goals. While direct action was only one tool in the ADAPT arsenal, it was seen by many outside of the organization as synonymous with the group. ADAPT grew rapidly to include several state chapters. It began holding various local actions and two national actions per year. Four hundred to 500 people with disabilities attended the national actions, following APTA conventions in order to protest, issuing demands for accessible public transit, blocking buses, and receiving significant coverage in

AP Photo/Mel Evans

mainstream media outlets. Washington, D.C. actions helped punctuate the need for federal laws or regulations from the DOT. In addition to its policy and direct-action work, ADAPT was a group that took the most excluded among the disability rights movement and included them in all aspects of their community. It was a level of empowerment the disability community had never seen and was certainly unheard of in Washington, D.C. Local ADAPT chapters still hold bake sales and fun runs to raise enough money to bring their members to national actions. It is not unusual to see people on stretchers or who live in nursing homes come to ADAPT events. Empowering those who are often excluded

A woman who uses a wheelchair is assisted at a security screening area at Newark

Liberty International Airport, New Jersey.

Though some advances relating to airport and airline accessibility were gained with passage of the 1986 Air Carrier

Access Act, disability advocates say that air travel for people with disabilities is

problematic and stands to be improved.

from other groups is part and parcel of ADAPT. In an action report about the 2011 Fun Run, Yoshiko Dart noted, “ADAPT is the heart and blood of the disability movement. There are many people in the movement working for things in different ways. If we didn’t have ADAPT, we

would go off on the wrong track and lose our energy and passion.” ADAPT brought access to public transportation to the forefront of the disability agenda and thereby helped to build it into a movement. In 1988, ADAPT v. Dole was a seminal part of ADAPT’s litigation strategy, which was created by the late Tim Cook, a brilliant disability rights attorney who had come from Philadelphia, Pennsylvania, to found the National Disability Action Center in Washington, D.C. The EPVA director, Jim Weisman, also joined the suit. It was an attempt to circumvent local option by getting the court to negate the 3 percent rule and thereby stop segregation through local option. ADAPT and Cook won that case when Judge Marvin Katz ruled that the 3.5 percent rule issued by the DOT was “arbitrary and capricious.” Yet it was a shortlived victory: The DOT appealed, and while the mandate to provide transportation services to people with disabilities stood, the court did not strike down local option. The issue was finally resolved when President George H.W. Bush signed the Americans with Disabilities Act on July 26, 1990, mandating that accessible fixedroute transit become part of the law of the land. Because of ADAPT highlighting fixed-route transit, lifts on buses became law 30 days after the ADA was signed. All other aspects of the law took effect far later. Other Transit Modalities Compared to accessible fixedroute buses in cities, other modes of public transit did not fare so well. Amtrak was given 20 years to provide the access required by the ADA. Yet Amtrak travelers with disabilities still cite serious problems with access in 2014.

Key Dates in Accessible Transportation 1968 – The state of California mandates that BART be built so it is accessible to

people with disabilities.

1970 – The Urban Mass Transit Act mandates lifts on buses. 1978 – In Denver, Wade Blank forms an original group called the Gang of 19,

which later becomes ADAPT.

1979 – The city of Seattle has lifts on buses, showing it could be done in a large city. 1983 – ADAPT is founded. 1986 – The Air Carrier Access Act is passed. 1988 – Judge Marvin Katz decides the ADAPT v. Dole case.

ATLANTA 2015 28th annual conference & celebration of the 25th anniversary of the americans with disabilities act

July 26, 1990 – President George H.W. Bush signs the Americans with Disabilities Act.

In 1988, ADAPT launched a campaign against Greyhound to highlight the issue of over-the-road accessibility. ADAPT members blocked over-the-road coaches throughout the nation. Under the ADA, overthe-road coaches, like those run by Greyhound, were also given an extended period to provide access. Larger entities were given 10 years and smaller ones 11. In 2014, some of the smaller over-the-road coach companies still do not provide buses with lifts. Yet it is required that all new buses purchased be equipped with lifts. As a consequence, by the year 2020, the 30th anniversary of the ADA, all over-the-road coaches should be accessible. The ADA does not cover air travel. In 1986, the Air Carrier Access Act (ACAA) was signed into law. Washington, D.C. disability organizations were invited to participate in prolonged mediation concerning the regulations for ACAA. Pat Wright of the Disability Rights Education and Defense Fund, David Capozzi of PVA, and James Gashiell of the National Federation of the Blind are a sample of those who participated for several months in extended meetings with airline and Federal Aviation Administration (FAA) representatives.

Since 1986, the regulations have been modified numerous times, yet air travel is still problematic for people with disabilities. Although 28 years have passed since ACAA became law, it is still common for airlines to destroy the costly power chairs they stow, injure travelers with disabilities in transfers, and even refuse to allow people with intellectual disabilities to board an airplane. Sadly, the ACAA has no enforcement mechanisms other than complaints to the FAA. Nonetheless, with two major airlines reporting more than 2,000,000 passengers with disabilities each year as customers, one can hope the market will warrant significant service improvements. The ADA Generation, those with disabilities who have grown up with ADA protections, may be our best hope for remedying outstanding public transportation deficits. These young citizens have high expectations of compliance. Having grown up with access, they insist upon it. Because of these high expectations, they may well be the advocates that demand and compel better regulations and enforcement of access laws in all modalities of public transportation. n

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THE ADA: HELPING STUDENTS FROM ELEMENTARY SCHOOL TO COLLEGE STORY BY CHARLES DERVARICS

rom a grade school student trying to access an old school building to a college student needing new technology for advanced courses, the Americans with Disabilities Act (ADA) has provided fundamental access to American education. Whether to supplement existing law or to forge new protections, the ADA has served as a significant tool for students and parents. “The ADA has empowered parents, created new expectations for students, and extended the horizon by miles and miles,” said John Kemp, president of The Viscardi Center, a nonprofit that seeks to improve education and employment among those with disabilities. As a result of the law, he added, “Parents have new hope for their children. It gives every person the feeling that they can have a wellrounded life.” In its 25 years of existence, the law also has proven resilient in a changing educational environment. This is particularly true regarding technology, as the Internet and the growth in online learning – though groundbreaking for many students – can leave those with disabilities at a disadvantage unless implemented properly.

“Emerging technologies, including Internet-based learning platforms, are changing the way we learn, and we need to ensure that people with disabilities are not excluded or left behind,” said Eve L. Hill, deputy assistant attorney general for the U.S. Department of Justice Civil Rights Division. Hill was a key point person in a 2013 ADA settlement between the federal government and a university on accessible course materials – one of many technologyrelated cases undertaken by the federal government in recent years. K-12 and Higher Education Emphasis Title II of the ADA prohibits discrimination against people with disabilities by all “public entities,” a group that includes local school districts and state education institutions. Title III of the law states that no individual can be discriminated against on the basis of disability in access to goods, services, or facilities in any place of “public accommodation,” including schools and colleges. Taken together, these sections seek to guarantee physical access to buildings along with access to needed services and transportation.

The law’s reach is broad in K-12 education. In 2012, about 6.4 million, or 13 percent, of students in America’s public schools had a disability, according to the National Center for Education Statistics. These figures are up from the 4.7 million, or 11 percent of public school students, who had a disability in 1990. Experts say that the ADA plays a vital complementary role in K-12 alongside other laws and regulations such as the Individuals with Disabilities Education Act (IDEA), which guarantees students with disabilities access to a “free appropriate public education,” according to Andrew Imparato, an attorney who is executive director of the Association of University Centers on Disabilities. To this foundation, ADA provides added protection on issues such as access to school buildings, summer programs, extracurricular activities, and access for parents. Unlike most federal education laws, ADA also applies to private schools. “The 800-pound gorilla in K-12 is IDEA,” Imparato said. Nearing its 40th anniversary as a federal law, IDEA requires every public school to provide free, appropriate public education. When implementing

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Community Programs Student- and faculty-led activities, from swimming to wheelchair sports, for people of all abilities

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AP Photo/Damian Dovarganes

the law, schools have promoted inclusion, or the integration of students with disabilities in traditional classroom settings with less emphasis on segregated pull-out classes for students with disabilities. “If IDEA were implemented properly, we wouldn’t have to use ADA,” Imparato said. Nonetheless, ADA plays a needed role by ensuring students can access buildings and services. In addition, ADA can help students participate in extracurricular activities and summer programs while helping parents with disabilities overcome architectural and other barriers to visit schools and participate in school activities. ADA also helps educators and the federal government navigate a changing landscape in American education. One new trend at the K-12 level is creation of charter schools, or public schools that operate separately from traditional public schools and often face fewer

Matthew Asner walks his son, Will, who has autism, to the Nestle Avenue Elementary School in the Tarzana district of Los

Angeles, California. The Individuals with Disabilities Education Act guarantees access to a “free appropriate public

education” to students with disabilities, but the Americans with Disabilities

Act reinforces accessibility to school

buildings, school activities, and education.

of the rules and regulations imposed on more traditional schools. The U.S. Department of Education last May released guidance stating that charters must conform with the same federal civil rights laws applied to other public schools. The guidance from the department’s Office for Civil Rights specifically states that charters must provide a free, appropriate public education for students with disabilities. “Since our last guidance on the topic in 2000, thousands of new

charter schools have opened,” said Catherine E. Lhamon, assistant secretary for civil rights at the U.S. Department of Education. “This guidance underscores that charter schools must satisfy the requirements of the federal civil rights laws.” For the years after high school, ADA has provided important protections for students pursuing college and university study. ADA has “greatly improved accessibility to the built environment,” Imparato said, thereby assuring that students can more readily access buildings, textbooks, and services. There also are more opportunities for both students and faculty members to gain accommodations related to their disability, he added. For students, these accommodations may include extra time on exams or curriculum materials in accessible formats. To provide these services, colleges and universities may have an office dedicated to the support of students with disabilities. Typical is the Disability Support Services office at the College of Southern Maryland, whose website notes that the office goal is to “help eliminate physical, academic, technical and attitudinal barriers to help students reach their academic and career goals.” Its specific roles are to provide reasonable accommodations, maintain and protect confidentiality of student records, help the university community understand the ADA, provide training in the use of assistive technology, and act as liaison with state and local entities. The Impact of Technology When lawmakers wrote the ADA 25 years ago, few could have predicted the explosive changes in technology that have occurred during the past quarter-century. As a result, one of the hot-button issues for the ADA and education

Photo courtesy of Gallaudet University

101

is access to new technologies that help spur learning, particularly at the college level. Online course materials, distance learning, and electronic assignments are but a few of the many innovations that can pose a challenge for individuals with disabilities and educational institutions alike. One high-profile case involved Louisiana Tech University, which faced allegations that it violated the ADA by using an online learning product inaccessible to blind or low-vision students. In this case, the student asked for help from the professor, who instead referred the issue to the online learning provider. When the company failed to fix the issue, the student went to the university office of disability services, a move that also did not resolve the problem. The student then filed suit against the university, saying that this lack of access placed the student so

A Gallaudet University student signs during her graduation ceremony. Accessibility to

facilities, to class materials and instruction, and to technology has been increased due

to the ADA, giving students with disabilities an equal opportunity to attend and to

succeed at institutions of higher learning.

far behind after one month that withdrawing from the course was the only option. The same student also contended that, in another course, accessible course materials were not provided in time for in-class discussions and exam preparation. Under a settlement reached last year, the university made a commitment to offer only learning technology, web pages, and course content with nationally acceptable guidelines for access for those with disabilities. It also said it would make existing web pages and

materials created since 2010 fully accessible. According to the U.S. Justice Department, the university also agreed to provide ADA training to staff and pay damages of $23,543 to the student. According to the Justice Department, the case and similar ones go to the core of Title II of the ADA, which states that individuals with disabilities must have an equal opportunity to participate in programs and benefit from aids, benefits, or services provided. The U.S. Department of Education also is active on this issue. Its Office for Civil Rights in 2013 announced a settlement with the South Carolina Technical College System (SCTCS), the state's largest postsecondary education system, in which SCTCS and its 16 member colleges agree to deploy websites that are fully accessible to persons with disabilities.

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AP Photo/Toby Talbot

103 During a compliance review, the civil rights office found that sites operated by SCTCS and two member colleges were not readily accessible to those who are blind or have low vision. As a result, the office said, the colleges were not complying with the ADA. Under the settlement agreement, the college system and its board agreed not only to provide full access to its websites but also to develop a resource guide with information about web accessibility requirements and to annually review the colleges’ websites to correct any issues with accessibility. “Schools today rely on websites to register students, distribute course materials, collect homework, and administer quizzes,” said Seth Galanter, principal deputy assistant secretary for civil rights, speaking about this settlement. “Students with disabilities cannot be denied the same opportunity to access these services on the web 24/7 from anywhere.” The timeliness of services to college students with disabilities is a focal point in these cases. An agreement between the University of California-Berkeley and the nonprofit Disability Rights Advocates last year paved the way for changes in that campus’ approach to students who are blind, have low vision, or have disabilities that make it difficult for them to access the campus library. Under a settlement, Berkeley pledged that students who request materials in alternative media will receive textbooks within 10 business days and receive course readers in 17 business days. The university also planned to launch a new print conversion system so students can request a book that is then converted into digital format for their use. E-books and e-readers also are a significant issue for college

Deanna Jones, a Vermont Law School student who is legally blind, reads a sample test

on her enhanced computer in Middlesex, Vermont, in July 2011. The U.S. Justice Department filed a brief on behalf of

Jones, who sued the National Conference of Bar Examiners for failing to provide

accommodations she needed to take a legal ethics exam. In August 2011, Jones won her lawsuit and was able to take her exam on a computer using screen-access software.

students with disabilities. In 2009, the National Federation of the Blind (NFB) filed a complaint against Arizona State University in U.S. District Court after the university’s honors college distributed e-book readers in a two-semester course. The e-book reader was inaccessible to blind students because its menus and controls were displayed only visually without an audio option. The NFB said the policy violated Title II of the ADA. After much discussion, the university voluntarily agreed to end the e-book component of the course

and agreed that it should work to address unnecessary barriers to books and other information via new technologies. Following this ruling, the U.S. Departments of Education and Justice released joint guidance in which they expressed “concern” about how colleges may be using e-readers that lack a specific textto-speech function. “Requiring use of an emerging technology in a classroom environment when the technology is inaccessible to an entire population of individuals with disabilities … is discrimination promoted by the Individuals with Disabilities Act,” they said – unless there are accommodations or modifications so that individuals with disabilities have equal access. Other Focus Areas But technology has not served as the only area of litigation regarding the ADA and higher education. In Georgia, an HIV-positive student accepted into Gwinnett College’s medical assistant program filed a complaint saying she was told to

NCIL

NCIL wishes a happy to the fiercest, finest, most passionate advocates anywhere.

National Council on Independent Living

In honor of the anniversary, NCIL will host: The 2015 Annual Conference on Independent Living (July 27-30) The ADA25 Gala (July 27) A March & Rally at our Nationâ&#x20AC;&#x2122;s Capitol (July 28) Please visit ncil.org for further details.

105 leave after one quarter and was told she was “a safety risk to others.” The student claimed her exclusion was a direct violation of the ADA’s Title III, which prohibits places of public accommodation from excluding individuals with disabilities, including HIV. As part of a final settlement, the college removed HIV- and AIDS-related questions from its application and established new policies that it will not discriminate against HIV-positive students. It also promised to provide ADA training for all employees, with a particular focus on HIV. The federal government sometimes has stepped in to overrule state interpretations of the ADA. In 2008, the Louisiana attorney general’s office concluded that McNeese State University was not required to have an accessible bathroom in its main student union building. The U.S. Justice Department initiated a compliance review under the ADA. A settlement between the Justice Department and the university provides that the institution will bring all newly constructed facilities into compliance with the ADA, develop a campus-wide physical access plan to ensure compliance with Title II of the ADA, designate an ADA coordinator, and display accessibility information on its websites. (More court rulings are profiled in the sidebar, “Court Rulings Enhance Focus.”) Spurred by court cases as well as input from the field, the federal government has updated its ADA rules. The U.S. Department of Justice in 2010 issued new rules for the law. One key change was that the ADA standards that apply to hotels must apply to dormitories and residence halls at colleges and universities as well. Other changes affecting colleges and universities require direct access for individuals

Court Rulings Enhance Focus The impact of the Americans with Disabilities Act on education continues to reverberate through the nation’s courts, even 25 years after the ADA’s enactment. Here is a sampling of court challenges during the past decade, including many that brought federal government intervention. The U.S. Justice Department and the Michigan Paralyzed Veterans Association filed suit to challenge the lack of accessible seating at the University of Michigan’s football stadium, then considered the largest college football venue in the United States. As part of the 2008 settlement agreement, the university pledged to add more than 200 wheelchair and companion seats to the stadium. It also planned to add additional wheelchair seating in luxury boxes and suites. The Justice Department reached a settlement with Lesley University in Cambridge, Massachusetts, concluding that students with food allergies and celiac disease can fully participate in the university’s meal plan. Under the ADA, food allergies may be a disability, the department ruled. Under the 2012 settlement, the university said it would amend its policies, develop individualized meal plans for students with food allergies, and provide readymade hot and cold gluten- and allergen-free food options. Mills College, a women’s college in Oakland, California, pledged to remove all architectural barriers to individuals with disabilities in existing facilities in a 2012 settlement with the Justice Department. A campus-wide survey in 2010 turned up 260 separate violations. Under the final agreement, the college planned to install or move grab bars and towel dispensers, adjust the force needed to open doors, install or adjust the slope of ramps, and adjust the height of existing bathroom facilities.

with disabilities to stages from audience seating areas, more detailed requirements on the purchase of accessible stadium tickets, greater accessibility for recreation areas such as swimming pools, and a larger number of accessible entrances. Moreover, the Justice Department also conducts detailed compliance reviews of access to college campuses. Under these 2010 rules, the department can begin these reviews and investigations under Title II of the ADA without a referral from the U.S. Department of Education or other entities. With the gains attributed to the ADA and related laws, advocates

for the disability community say the next challenge is to get more college-educated individuals into the workplace. Employment among adults with disabilities has not increased significantly since 1990, Kemp says. Currently, only about one in five adults with disabilities works full time, while another 13 percent work part time. But those with disabilities are breaking down barriers in education, which may be one factor in increasing employment down the road. “We have yet to crack the employment issue,” Kemp said. But advances in education, he noted, “are a good sign for the future.” n

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COMMUNICATIONS FOR ALL THE ONGOING EFFORT TO MAKE TELEPHONE AND INTERNET TECHNOLOGY ACCESSIBLE FOR PEOPLE WITH DISABILITIES

n the last half-century, various pieces of legislation have been passed to increase access for people with disabilities to specific areas of modern life. For instance, the Architectural Barriers Act of 1968 mandated that federally funded facilities incorporate accommodations for those with disabilities, and the Education for All Handicapped Children Act of 1975 (now known as IDEA – the Individuals with Disabilities Education Act) guarantees a free appropriate public education to those with disabilities. But inaccessibility remained an issue in one area: communications technology. Thankfully, passage of the Americans with Disabilities Act (ADA) in 1990, specifically Title IV of the act, kicked open the barn door of telephone communication access to the community of people who are deaf, hard of hearing, or have speech disabilities. Less than a decade later, a 1998 amendment to the Rehabilitation Act included Section 508, a mandate that federal agencies and contractors must make their electronic and information technology accessible to the disability community; Section 508 is particularly relevant to accessibility to resources online for people who are blind or have low vision. While Title IV of the ADA and Section 508 affirmed

the need and the duty to ensure communications accessibility for people with disabilities, work remains to be done to make that accessibility a reality for all. Title IV of the ADA Two-and-a-half decades have come and gone since the passage of the ADA. Over those years, the landmark legislation has literally and figuratively changed the landscape for the disability community. Title IV is a prime example. Enacted to ensure access to telecommunications for people who are deaf, hard of hearing, or who have speech disabilities, this section of the ADA has successfully expanded and improved a vein of communication for individuals with disabilities that most Americans take for granted. From spurring the creation and adoption of new technologies to aid individuals who are deaf, hard of hearing, or have speech disabilities in making direct telephone calls to fostering new business

opportunities for firms serving this community, Title IV has undeniably had a positive impact. But it takes time for the mandates of any major legislation to fully manifest themselves. Like a pebble dropping into a pond, the initial splash from the passage and application of Title IV created ripples that are only now reaching some segments of the deaf, hardof-hearing, and speech disability communities. “The promise of the ADA is still evolving,” said Bruce Peterson, senior director of marketing for CaptionCall®, a firm that provides captioned telephone services for people with hearing loss throughout the United States. “Often people think that because the ADA was passed in 1990 and there have been visible architectural changes for the disabled like wheelchair ramps, a big effort was made and now we’re sort of done with it,” he explained. “The growth of IP CTS illustrates that we’re still figuring out how to deliver on the promise of the ADA.” Internet Protocol Captioned Telephone Service, or IP CTS, is one of the technologies used for telecommunications relay services (TRS) under Title IV for the disability community. To get a feel for the continuing impact of Title IV, it’s useful to look at the service and technologies it prompted.

Photo by Sclozza

STORY BY JAN TEGLER

Photo by Sclozza

107 Opposite page: A TTY featuring an acoustic

coupler for standard telephone handsets and

a mini printer (seen on the top of the machine) that records the conversation.

This page: A videophone by Sorenson

Communications, pictured at left, and a graphic (below) explaining how the videophone and

video relay service (VRS) work. VRS has been a huge step forward in telecommunications for

Photos used courtesy of Sorenson Communications

sign language users.

Before the ADA Prior to the passage of the ADA, the primary telecommunications mechanism for individuals with hearing and speech disabilities was the teletypewriter, or TTY. First fielded in the late 1960s, the TTY was simply an electronic device enabling text communication over a traditional analog telephone line. TTY devices with acoustic couplers could be joined to AT&T® standard telephones, allowing vocal communications to be converted to text. TTYs were a success almost immediately, rapidly adopted by the hearing/speech-impaired communities. But for the next two-and-a-half decades, little progress was made in improving on the technology “because there was no incentive to invest in it,” said Peterson. “One of our VPs who is deaf and is in his 70s who’s been an educator and academic remembers the years of the TTY before the ADA,” he added. “He testified before

Congress that a conversation that used to take him 20 minutes on the TTY took him 2 minutes now.” VRS and IP CTS With the passage of the ADA by Congress, legal requirements took hold that led to technical innovations – but change didn’t come overnight. The Federal Communications Commission (FCC) was charged with the sizeable challenge of implementing Title IV. Rules for application of the legislation were vital, as was a budget to compensate the telecommunications firms who would be required to provide “functionally equivalent” services. The legacy telecoms tasked with meeting the requirement made investments to provide Title IV-mandated services, but Peterson notes that the majority viewed the new responsibility as an expense with little to no return in profit. Thus,

the incentive to create new technologies to serve individuals with hearing and speech disabilities was missing. However, the major telecoms or “common carriers” are still involved in that they fund relay services technically. They are assessed what’s called a “contribution factor” by the FCC that requires them to pay a percentage of their revenue into a fund for Title IV-related services annually. The FCC generally sets the contribution factor based on its projections of what it will need to fund these services. While interstate telecommunications carriers are not allowed to place a TRS surcharge on customer bills, state telephone companies often do. “Initially, Title IV said that telecommunications companies were charged with responsibility of providing services that were functionally equivalent for those who are deaf or hard of hearing,” Peterson explained. “And there were some providers who played in this area – AT&T, Verizon, and others

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Celebrating the 25th Anniversary of the Americans with Disabilities Act (ADA) MP0314

Image courtesy of CaptionCall

109 – but over the years, the provision of the service was assumed by companies like Sorenson [Communications] and others.” Communication Service for the Deaf, for example, was the very first company to offer video relay service (VRS), working through the Sprint Corporation. VRS providers today include the aforementioned Sorenson Communications, Purple, ZVRS, Convo, CAAG, and ASL Services. Similarly, Hamilton, Sprint®, Purple, and Miracom USA provide captioned telephoned services today. Sorenson Communications was started in 2003 to provide VRS to the American deaf community. Founder Jim Sorenson was involved in video compression technology, a portion of which became Apple’s QuickTime multimedia framework. Sorenson’s brother-in-law happened to be deaf. According to Peterson, Sorenson began to understand sign language and “just how disconnected a deaf person could be because they had no way of calling anybody with hearing.” With the needs of deaf individuals in mind, he searched for a way to use video communications to benefit the community. His work led to the founding of Sorenson Communications and the launch of the company’s first videophone, the VP-100®. Employing video compression technology, the VP-100 provided an endpoint that could distribute video to a television of any size, rather than the restrictive 3-inch windows others had begun to offer. As Peterson points out, the new videophone was a leap forward for those trying to communicate in sign language. Additionally, Sorenson offered its products to the deaf marketplace for free. “One of the great promises of the ADA was to deliver the ability to communicate this way to people

who previously did not have it,” Peterson said. “Some of the innovations Sorenson brought allowed video relay services to be a tremendous success.” Successive iterations of Sorenson’s videophone built on the basic premise of VRS, wherein the phones connected to customers’ televisions, which in turn connected via Internet to video interpreters. The video interpreters would communicate via American Sign Language (ASL) with the deaf person, then would use regular telephone service to call any hearing party and relay the deaf person’s conversation. VRS has great market penetration and is widely used by a “very high proportion” of the tightknit American deaf community, Peterson observes. “Demand for the service is in large amount satiated on the deaf side. You can look at the penetration of VRS and say that it’s a great success story – a combination of regulators and private industry figuring out how to serve a group of people and deliver on the promise of the ADA.” But the promise of Title IV has yet to be fulfilled for the much larger hard-of-hearing population in the United States. Nearly 20 percent of Americans, or about 48 million, report some degree of hearing loss, according to the Hearing Loss The CaptionCall phone

employs Internet Protocol Captioned Telephone

Services to enable users who are deaf or hard

of hearing to make and receive phone calls.

Association of America. The figures are evidence that the ADA is still evolving, Peterson says. He adds that for the hard of hearing, “relay services are one of the best-kept secrets of the ADA.” The need for and relative obscurity of relay services for the hardof-hearing population led to FCC approval in 2008 of IP CTS for this group as a “compensable service.” Simply put, those with verifiable hearing loss would be eligible for IP CTS free of charge. Recognizing the market for these services, Sorenson Communications launched CaptionCall in 2011 to capitalize on its experience with VRS and serve the larger population of those who have hearing loss and can’t use the telephone. Similarly, CaptionCall designed its own CaptionCall phone. The device connects customers who are hard of hearing with callers using IP CTS – a standard telephone line teamed with broadband Internet. The caller’s voice is sent to the CaptionCall service via the Internet connection. A CaptionCall communications assistant rapidly converts the caller’s words to text, employing voice-recognition technology. Then, captions are sent back to the CaptionCall phone display screen. “We did some of the same things Sorenson pioneered: creating,

111 designing, and engineering our own endpoint [phone]; providing our own communication assistant service; and – unique from what others were doing – provided our own sales and technical outreach team who go out and install these phones for people who need them,” Peterson said. Serving this market turned out to be harder than CaptionCall anticipated, with the company struggling to figure out how to contact people eligible for IP CTS according to the ADA. Working with audiologists and hearing health care providers to reach out to those who are hard of hearing, the firm “discovered that most people didn’t know about our service – even audiologists didn’t know about it,” Peterson said. As CaptionCall was able to locate people who needed its services, the company began to grow quickly, Peterson says. While the deaf population, numbering in the low hundreds of thousands, is well served, CaptionCall’s senior director of marketing notes that a crosssection of the estimated 10 million Americans who use hearing aids are likely eligible for IP CTS under Title IV. “This market is underserved from a hard-of-hearing standpoint. I’d say those who are served number in the low hundreds of thousands, probably less than 200,000 served by IP CTS services today.” Title IV and the Access Challenge “Since its inception in 2010, CaptionCall has advocated giving access to its phone at no cost, ensuring that all those who need the service get it regardless of their ability to pay,” said Peterson. This position recently put CaptionCall at odds with the FCC. In January 2013, the Commission issued a new set of rules governing funding and eligibility for IP CTS services. Among the revised

regulations was a stipulation that those with hearing loss demonstrate eligibility for the service by paying at least $75 for CaptionCall equipment. “Cost is still an issue for many people,” Peterson said. “The deaf, like other disabled communities, are economically disadvantaged.” With this chief concern in mind, CaptionCall challenged the FCC’s orders in court, arguing that the FCC regulations violated the rights of those with hearing loss. This past June, the Washington, D.C. Circuit Court of Appeals ruled in favor of captioned telephone service. The ruling nullified all of the rules put forward in the FCC’s 2013 order because the FCC “failed to follow due process.” Changes to the FCC’s rules came late last summer. Surprisingly, however, the court did not rule on what eligibility requirements might be needed to qualify those with hearing loss for free IP CTS services. Thus, there are no current federal rules or guidelines for the use of captioned telephone service. “There’s a large debate about how you measure eligibility,” Peterson said. “It ranges from setting a decibel hearing-loss level that might be appropriate to other measures.” According to Peterson, this leaves CaptionCall with no option but to “go down a path of professional certification of the eligibility requirement.” Accordingly, CaptionCall requires that individuals seeking their IP CTS phones and services verify their hearing loss with professional certification from an audiologist or hearing health care provider. “We have a strict list of professional titles that we allow to certify for a person,” he added. Title IV and the Business Challenge One more challenge on the Title IV landscape is the issue of funding

for the relay services CaptionCall and other firms provide. As Peterson points out, firms in the business of serving the deaf and hard-ofhearing communities must have an incentive to perform. As mentioned, the FCC sets the contribution factor for common carriers based on its projections of what it will need to fund these services. The FCC uses a cost-based model to set rates for different types of relay services. Peterson argues that the model the FCC uses is outdated, failing to account for many of the business and labor expenses that come with providing relay services. So out of balance is the model, says Peterson, that companies in the relay services sector are deciding that it’s uneconomic and are therefore leaving the business. The real losers are the communities Title IV covers under the ADA. “The FCC is not doing an appropriate job in setting a market-based rate that allows a provider like us to invest and have an incentive to perform,” Peterson said. “Rate is one of the core drivers for us in terms of how we can serve our customers, but the FCC goes through a process of disallowing costs. “They ask us to tell them how much it costs to provide relay services. We provide that information and then they say, ‘We’re not going to pay you for R&D, outreach, or taxes.’ These are real business costs that the FCC has disallowed from their model over the years.” Section 508 Section 508 was added to the Rehabilitation Act in 1998 to require federal agencies and government contractors to make their electronic and information technology accessible to people with disabilities in the interest of eliminating barriers, making available new

GuidelineS color use Single color

two colors

reversed examples on solid background

The College of New Jersey Graphic identity StandardS Guide

Happy 25th Anniversary, ADA Assistive Listening Solutions Since 1976

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National Federation of the Blind photo

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opportunities, and encouraging development of technologies that will help achieve these goals. Over the nearly 17 years since its inclusion in the act, progress has been made under Section 508. But as Chris Danielsen, director of public relations for the National Federation of the Blind (NFB) explains, success in making government websites truly accessible remains uneven. “There are varying degrees of compliance at different federal agencies,” Danielsen said. “Depending on who you ask, you can get widely differing opinions about how well the government is complying.” The importance of accessibility for people with disabilities, including those who are blind, to federal websites is much the same as it is for the broader population. Issues including user-friendliness, privacy, and liberty are among the main concerns for the individuals with disbilities. “When you’re talking about computers and the Internet, the issues surrounding non-visual access are most important,” Danielsen said. “Can the

Chris Danielsen, director of public relations for the National Federation of the Blind (NFB), visits the Section 508-compliant website of the NFB.

technology present in websites function with text-to-speech screen readers and Braille displays?” Danielsen himself is blind and provides personal illustration of the advantages of Section 508-compliant government websites and the disadvantages of those that are not. “Technology can be very liberating when it’s designed in a way that we [people with disabilities] can use it,” he said. “Twenty years ago, we were in a world where, primarily, you had to fill out forms on paper, [and] the blind were at a disadvantage. Filling out forms like that is something blind people cannot do. But you can fill out a form on a website if it’s designed to be accessible. “To the extent that we can interact with our government,” he continued, “and do all of the

‘paperwork’ ourselves online – without the need to share information with a third party in order to get help – gives us more liberty and, as importantly, privacy.” In early October, the NFB reached an agreement with the U.S. Department of Education to make student loan information accessible to blind Americans. “This was a big concern,” Danielsen said. “There were a lot of issues around the department’s direct loan program for students with disabilities. The websites weren’t accessible, they weren’t getting information to blind students who wanted it in Braille or large print, for example.” Progress has been made on Section 508 agreements with government agencies including the Social Security Administration, says Danielsen. But other agencies have not been as receptive. The Internal Revenue Service is a prime example. “We have many concerns about the IRS’ processes as well because we’re dealing with our private financial information,” he said. “You would have thought they would be in compliance, but they are not. Like the rest of Americans, we want to be able to file our taxes independently.” Overall, the effect of Section 508 has been positive, but compliance is only enforced when complaints are filed, Danielsen says. What’s more, the guidelines provided by Section 508 must keep pace with technology. According to Danielsen, the Section 508 “refresh process” to update the rule’s requirements begun in 2010 has still not been completed. “I think there has been progress due to Section 508 but characterizing how much is difficult,” he concluded. “There’s a lot of awareness in government of this, but levels of compliance vary and more can always be done.” n

REWALK ROBOTICS CELEBRATES THE 25 ANNIVERSARY th

OF THE AMERICANS WITH DISABILITIES ACT For many in the spinal cord injured community, the dream is to one day be able to stand and walk again.

TODAY, THAT DREAM IS A REALITY. AROUND THE WORLD, people are using ReWalk Robotics exoskeleton systems to stand and walk at home, at work and throughout their communities. ReWalk Robotics is proud to serve as the leading exoskeleton technology for lower-limb disabled individuals, helping men and women worldwide achieve these dreams, and more. ReWalk is a wearable robotic exoskeleton, which provides user-initiated mobility through the integration of a wearable brace support, a computer-based control system and motion sensors. The system allows independent, controlled walking while mimicking the natural gait patterns of the legs. ReWalk was developed by Dr. Amit Goffer, an Israeli inventor who became quadriplegic after an ATV accident in 1997. It was through his own personal experience in utilizing mobility devices for people with spinal cord injury that Dr. Goffer developed the ReWalk. ReWalk is the only FDA cleared exoskeleton technology in the United States, with clearances both for rehabilitation and for personal

use. Across the U.S. there are individuals with spinal cord injury using ReWalk Personal systems in their daily routines, a monumental point in innovation for those in the SCI community. ReWalk is the most used exoskeleton system in the world. ReWalk Robotics is honored to work with leading rehabilitation centers, clinics and Veterans Affairs Hospitals in the U.S., providing hundreds of individuals in the SCI community access to the technology. It is a privilege to be able to help someone stand up, hug their loved ones, look people in the eye and return to many of daily life’s actions and activities they did not think would be possible. At ReWalk, we say our technology is “more than walking.” Clinical testing and research of the ReWalk Rehabilitation system has shown physiological benefits to exoskeleton system users. We believe the health benefits we have seen from studies of those using the rehab system will only increase for those who own a personal system and use the ReWalk routinely.

‘Like’ us on Facebook or visit our website for more information.

As we celebrate the 25th Anniversary of the Americans with Disabilities Act, ReWalk Robotics remains committed to our goal to fundamentally change the lives of individuals with spinal cord injury. At ReWalk, we believe the future holds no bounds for new technologies that can aid countless people worldwide. We offer our thanks to everyone who has been a part of our journey and applaud the architects of the ADA for all they have done for millions of disabled Americans.

ReWalk

ReWalk.com

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TECHNOLOGY FOR PEOPLE WITH DISABILITIES YESTERDAY, TODAY, AND TOMORROW STORY BY ERIC TEGLER

eople with disabilities have interacted with and relied upon technology and medical science for a very long time. However, our image of what that technology/science looks or acts like depends in large measure on the era in which we’ve lived. What image do you picture: a paralyzed individual cueing a plasma screen Internet-linked keyboard via their eye movements? A deaf student watching a 1980s sitcom with closed captioning? A patient with cerebral palsy receiving experimental diazepam (Valium) doses in the 1960s? Could you picture King Phillip II of Spain using the first known dedicated wheelchair in 1595? What about an ancient Greek amputee using a cane? The changing relationship between those with disabilities and the tools they use to journey through life has largely evolved for the better, if unevenly. The technology available has been influenced both by the pace of scientific progress and Western historical models of disability – the religious, medical/genetic, and contemporary rights-based models that set the tone for society’s response to people with disabilities. Religion ascribed good and evil to disability – virtue and sin. Mixed

with the religious aspect were societal conditions that often required people with limitations to execute tasks in line with their capabilities to fulfill the co-operative requirements for survival in the pre-industrial era. Despite the perception of individuals with disabilities as inferior, some efforts were made to aid those who acquired disability after birth, particularly disability stemming from battle. Thus French army surgeon Ambroise Paré introduced both modern amputation surgery and productive prosthetic design in the mid-1500s. Paré’s invention of an above-knee device combining a kneeling peg leg and foot prosthesis with a fixed position, adjustable harness, knee lock control, and other engineering features allowed its users limited walking/crouching mobility in farm fields and workshops. The medical model of disability that arose following the Enlightenment and industrialization conformed to the emerging commoditization of work, time, and production. Though technology progressed, people with disabilities were ironically further marginalized by advances in mechanization and productivity that they could not access, and by attitudes shaped by a scientific understanding of biology informed by Darwinism.

Viewed as unproductive, they were often segregated and placed in institutions that reinforced their separation. Prevailing attitudes affected the design of assistive devices like the Bath wheelchair, which, though it aided mobility, was designed to be maneuvered by an able-bodied individual. Not until the 1880s were pushrims widely added to wheelchairs for self-propulsion. Twentieth century medicine and science viewed disability more through the prism of individuality, aiming to provide the person with appropriate skills to integrate into broader society. Though still the focus of charity, and sometimes social purges, those with disabilities began to develop a voice, particularly after World War I. Lobbying for participation in the labor force spurred developments like the application of physical therapy and occupational therapy to disability and the general concept of rehabilitation. Increasing productivity emerged as a trend in the first half of the century, along with recognition that physical access constraints must be overcome. Such recognition led to development of devices like the stair-lift in the 1930s and a nascent mobility products industry. With (and out of) the post-World War II civil rights movement came

117

a rights-based mentality that gave rise to the term “disability” itself. Emphasis shifted further from dependence to independence as people with disabilities sought a political voice and became politically active, a trend that continues today. Legislation, from the Rehabilitation Act of 1973 to the 1990 Americans with Disabilities Act, shaped what would become known as “assistive technology” for people with disabilities. In the 1970s, assistive technology paralleled the broader social movement of the disability community, which sought greater self-expression. Augmentative and alternative communication devices like the HandiVoice literally gave those with speech disabilities a voice. Shoebox-sized and operated with a numeric keyboard, the

A Quickie Q7 wheelchair. Advances in

wheelchair design have ranged from the

addition of pushrims to use of lighter weight

materials, powered mobility, and microchips.

HandiVoice had more than 900 pre-programmed words, selected phrases, and 45 phonemes. Each word, phrase, or phoneme was stored and accessed via a three-digit code. With the right combination entered (a tedious, cumbersome process), the device would produce voice output. Difficult as it was to use, the HandiVoice exemplified the desire and determination of people with disabilities – speech or otherwise – to communicate. Though not strictly technological, the notion of eliminating physical

barriers to access expanded in the 1960s, gaining momentum and regulatory backing though the 1970s and ’80s. It spurred basic infrastructure revisions like wheelchair ramps and designated parking spaces. The concept subsequently yielded everything from “kneeling buses” to elevators with buttons in Braille, flexible drinking straws, and Velcro. More recent decades have seen the computer/information technology revolution thoroughly permeate assistive technology, affording individuals with disabilities undreamt of potential and increasing productivity. Tablet communication devices with powerful, tailored software, advanced prosthetics with sensory feedback, cochlear implants with 20-plus sound channels, and advanced spasticity medications

Photo courtesy of Fayedizard

Wikimedia Commons

119 with fewer side effects like CTP-354 illustrate the technology revolution. Enumerating all of the medical and technological advances would require a book, but we can better understand their respective significance with perspective from John D. Kemp, president and CEO of The Viscardi Center, a respected New York-based nonprofit dedicated to educating, employing, and empowering children and adults with disabilities, and, as a person who uses four prostheses, someone who understands disability firsthand. Looking back over the last 50 years, Kemp singles out, in his opinion, advances in communication as the most meaningful to the disability community. “Since 1964, the greatest advance has to be around the issue of communications and the power of computing. It has changed everything – from hearing and sight aids to software which assists those with diminished power of speech, to communication for paralyzed individuals.” Modern speech-to-text hardware and software represent one of the highest profile advances in augmentative communication, but it was preceded by several innovations that proved equally important, including closed captioning (CC). People without disabilities take it for granted today, usually only noticing closed captioning when in loud public places like bars or airports, but prior to its advent, deaf people were only able to partially participate in the revolution that TV and movies precipitated. One of the earliest demonstrations of CC was done in February 1972 at Gallaudet College, where ABC and the National Bureau of Standards demonstrated closed captions embedded within a normal broadcast of The Mod Squad. Closed captions were successfully encoded and broadcast in 1973 with the cooperation of PBS station WETA,

Top: Closed captioning has enabled people who are deaf or hard of hearing to access televised entertainment and information.

Above: A man uses a custom augmentative and alternative communication device.

People with disabilities that affect speech

can use such devices to express themselves.

which thereafter began selected CC broadcasts of pre-recorded programs like The French Chef. Real-time captioning, the process for captioning live broadcasts, was developed in 1982, but regular live CC broadcasts weren’t a feature of television until the late 1980s. Federal Communications Commission (FCC) rules requiring all analog television receivers manufactured with screens of 13 inches or greater to have the ability to display CC didn’t come into force until 1993. The ADA itself (Title III) required public facilities, from hospitals to

museums, to provide access to verbal information on televisions, films, or slide shows. As recently as February 2014, the FCC set new rules for TV closed captioning, resolving concerns on captioning quality and providing guidance to programmers and distributors. Though developed with the deaf foremost in mind, CC benefits the broader population, constituting an effective emergency communications tool and helping improve literacy skills. For nonnative English speakers, English language captions improve comprehension and fluency as well. There are less obvious ways in which assistive technology advances have improved quality of life and productivity, sometimes the more basic, the more effective. “I use four prostheses and the weight and technology have really advanced,” Kemp said. “The materials that are used, like titanium, are so much lighter that the energy used to move, to ambulate, is so much less.” Fundamentals like materials technology create secondary effects, frequently finding new application and giving rise to design possibilities, including prosthetic advances coming from research centers like the Rehabilitation Institute of Chicago and Walter Reed National Military Medical Center. Recently, these have included coordinated articulating fingers – all five digits – that allow a double-arm amputee to pick up an egg without breaking it. Kemp calls it nothing less than incredible, but he also recognizes that the unfortunate causes of disability often drive meaningful developments in the field. “The perversity of this is that the major funding for almost all this research is the Defense Department, driven by the need to solve the problems of wounded warriors.” Innovation born from conflict is an age-old phenomenon. Less

The Council for Disability Awareness is proud to join the celebration of the 25th anniversary of the Americans with Disabilities Act.

The Council for Disability Awareness is a nonprofit organization dedicated

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121 recognized, however, are assistive technologies inspired by disability that have found application across society. Closed captioning is one example. The typewriter is another. The first working typewriter is credited to Pellegrino Turri, an Italian who built it for his blind friend, Countess Carolina Fantoni da Fivizzano in 1808. Letters she wrote using Turri’s typewriter still exist, though the device itself was lost long ago. Nevertheless, Turri’s desire to develop an aid for disability produced an invention that, with refinement later in the 19th century, became central to written communication worldwide. Major swaths of today’s communication landscape rely on the Qwerty keyboard developed for the typewriter; it remains the primary interface for computers and connected devices. The Internet is a crucial tool for people with disablities for education, information, entertainment, and particularly socialization. Yet access remains an issue, with just 54 percent of individuals with disabilities using the Internet versus 81 percent of those without disabilities. The chief factors are the lack of alternative user interfaces and economic obstacles, monthly broadband costs in particular. The importance of being connected, Kemp says, is illustrated by usage. “Once a person with a disability is connected to the Internet, they stay on twice as long on average as a non-disabled user,” he said. No discussion of disability technology can overlook the wheelchair and mobility in general. It was not until relatively recently, Kemp reminds us, that truly significant progress in design and development of this fundamental disability aid was made. “There was essentially one international wheelchair producer [50 years ago] called Everest and Jennings. In the 1960s, they had 99

The DEKA Arm System, an advanced

robotic prosthetic capable of manipulating power tools and handling objects as

delicate as grapes and eggs, was invented

by Dean Kamen and funded by the Defense Advanced Research Projects Agency, an

agency of the U.S. Department of Defense.

percent of the market. They built very stiff, heavy, metal collapsible wheelchairs. They were rigid. You had to sit vertically. They were just the boxiest, worst design. Finally, along came a couple of hip wheelchair manufacturers, people like Marilyn Hamilton. “She developed a wheelchair, called the ‘Quickie,’ and people began to realize you could have cambered wheels and dispense with push handles, allowing people to control their own destiny – a big message. Wheelchair design became consumer responsive, then adopted lightweight materials, powered mobility, and microchips. It kept on going to a chair that Dean Kamen invented, a predecessor to the Segway, that used gyroscopic technology to stand up on its back two wheels, balance itself, and put people at eye level. It could overcome some of the environmental barriers that exist today. There have

been tremendous changes in 50 years just in wheeled mobility.” The impact of Hamilton’s Quickie and Kamen’s later iBot (ironically no longer in production) isn’t limited to the physical mobility they helped advance, Kemp says. “If you just focused on what wheeled mobility advances did to get an individual from point A to point B, you’d miss the real benefit of how [a wheelchair] goes to the very core of their identity, how they view themselves, and how they want the world to view them. It’s a nuance that underlies all of these technologies: Can I be a productive employee? Can I be a good family member? Can I be a sportscar driver? Can I accomplish my dreams?” The prospect of more people with disabilities reaching their dreams abetted by technology is certainly enticing. But technology usually also has unintended consequences, and they affect the disability community as well. A recent rise in Braille illiteracy has been linked to the audio-interface tools in greater use by blind individuals than ever. Even simple changes like the trend toward self-serve consumer technology have implications. “The idea of self services – pumping your own gas, banking, and travel kiosks – is very efficient for the companies [that provide the services],” Kemp said. “But when I go to an ATM, I cannot put my card in the card-reader and pull it back out with my [prosthetic] clamps. The consequence

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123

for anyone with quadriplegia or hand-dexterity issues is that, like me, they have to turn their card over to someone standing in line behind and say, ‘Will you swipe my card for me and turn around while I enter my code?’ We [people with disabilities] accept the trade-off of being able to get money any time of day or night and other conveniences, but sometimes it does diminish the independence we’d prefer.” Technology also creates conundrums centering on quality of life for people with disablities, Kemp points out. “Many premature babies are ending up in our [Viscardi Center] school. They have various complications and medical complexities, but pharmaceutical and medical technologies have allowed them to be here. Now that we can identify Down syndrome and intellectual disabilities before a baby is born, parents are faced with horrible decisions. They don’t know, if the child will live, what kind of life it will have. I think the disability community is out to prove you can live a good life

A Toyota Prius modified to operate as a Google driverless car drives through a test course.

if you are properly supported by government, family, friends.” There is a flip side to better medications, of course. Drugs now aid in the management of mental health/ depression and promote productivity by managing conditions like bowel/ bladder infection. They even offer hope of one day regenerating nerve cells to reconnect the spinal column. “These have enabled a lot of people who otherwise would not be able to function well in society or within their families. Mental health is one of the bigger areas where advancements have aided those with disabilities. It’s been a late bloomer in the disability movement,” Kemp said. Despite the variety of challenges they face, children educated at The Viscardi Center are just like their counterparts without disabilities in so many ways. Kemp cites the fact that they address the same issues

as other schools, such as bullying – an ironically refreshing reminder that kids are kids. One of the chief lessons students there learn, Kemp explains, is recognition that advances in technology that offer people with disabilities historic opportunities merit responsibility in turn. “You don’t get a free pass in this world just because you have a disability. You have a responsibility to be as productive and independent as anybody else. One of the tenets of our school is empowerment. As long as we have access to technology, we can send our thoughts anywhere in the world. We can publish anything we want in blogs, we can create. We do have a responsibility to say what we want to say and not just be passive recipients of charity and empathy.” What future technological innovations will further enable individuals with disabilities? They’ll be broadbased technologies like Google’s emerging driverless car, whose implications for mobility are farreaching. Similarly, wearable tech from Google Glass to the Apple Watch may offer greater utility to the disability community than anyone else. Dedicated technologies like software that can provide object recognition, real-time two-way speech-to-text recognition, emotional interpretation, and communication will be part of the landscape, as will increasingly effective surgical intervention that can implant the brain with sensory and control functionality it lacks. In turn, technology has the power to refashion the way in which society views disability, shifting focus from dependence to independence, from method to outcome. “Do you really care how something is done rather than what the outcome is?” Kemp asked. “Does it really matter that someone is typing with their feet or speaking to Dragon dictation software?” n

124

reinforcing federal intent: The ada amendments ACT of 2008 Story by charles Dervarics

hile the Americans with Disabilities Act (ADA) of 1990 was a watershed moment in American politics, it did not signify the end of the battle for civil rights among people with disabilities. In fact, the years after the landmark law brought considerable frustration, as ADA’s implementation and subsequent court challenges left many advocates on the defensive and seeking additional action to enforce the legislation’s original intent. From employment to public accommodations, “It was as if individuals had to constantly prove that they had a disability,” said John Kemp, president of The Viscardi Center, a New York-based nonprofit that provides services to educate and empower individuals with disabilities. In the process, a once-vaunted civil rights law became one of only limited assistance. Due to successful court challenges to the ADA, the law was interpreted in a way that was inconsistent with the intent of the people who wrote the law. Over time, however, these developments spurred round two of the fight for equal rights. This work culminated in 2008 when advocates for the disability and the business communities sought common

ground in reinforcing the ADA’s original intent. The end result was the ADA Amendments Act of 2008, approved by Congress and signed into law by President George W. Bush in September 2008. In a rare show of cooperation, overwhelming bipartisan support from both Republicans and Democrats had paved the way for final passage. The Case for Reforms The ADA of 1990 prohibited discrimination based on disability, similar to the way previous civil rights laws provided the same protection based on race, religion, and gender. But as with all new laws, this federal statute was subject to implementation on the ground and in the courts. In this case, advocates for people with disabilities said that federal regulations and, particularly, court rulings, subverted the law’s original intent. “Attorneys had exploited loopholes in the law to weaken its civil rights protections,” said Bobby Silverstein, a Washington, D.C., attorney who knows the issue well. As a senior aide to Sen. Tom Harkin, D-Iowa, one of the architects of ADA, Silverstein played a major role in writing the details of the 1990 law. While advocates voiced some unhappiness with

federal regulations for the ADA, they were particularly challenged by court rulings, including those from the U.S. Supreme Court. In one case, Sutton v. United Airlines Inc., a pair of sisters who flew cargo planes wanted to fly passenger jets for United. But they failed to meet a company policy requiring uncorrected 20/20 vision, even though they could achieve that level of vision with corrective lenses. The sisters took the company to court, arguing that United’s vision requirement was not job-related and consistent with business necessity. But the Supreme Court never reached the issue of whether the vision requirement was OK under the ADA because the Court ruled 7-2 that the sisters were not disabled enough to qualify for civil rights protections under the ADA. In another case, Toyota Motor Manufacturing, Kentucky, Inc. v. Williams, Toyota employee Ella Williams sought an accommodation because of carpal tunnel syndrome. She had initial success suing Toyota for failing to provide reasonable accommodations under the ADA, but the U.S. Supreme Court eventually ruled unanimously that her health issue was not a “disability” and did not limit any major life activity.

AP Photo/Pablo Martinez Monsivais

125

These were “problematic cases for those with disabilities,” said Andrew Imparato, an attorney and former president of the American Association of People with Disabilities (AAPD) who worked with bipartisan leaders on Capitol Hill to undo the harm that the federal courts had created. According to Imparato, the practical result of these rulings was that individuals with disabilities faced a more difficult hill to climb to prove a disability and show that a disability affected a major life activity, a core ingredient of the ADA’s original protections. Sutton in particular focused attention on whether corrective measures – from contact lenses to new, cutting-edge medications – might lessen the effects of a disability. “The practical result of these rulings was that disabled individuals were penalized if they were able to manage the symptoms associated with their disability,” he said. “Anyone who functioned well with a disability had their cases thrown out.” Under Williams, the Supreme Court also ruled that when Congress used the term “substantially limited” they meant “prevented or severely

President George W. Bush, seated, signs S.

3406, the ADA Amendments Act of 2008, in a ceremony in the Oval Office of the White

House, Sept. 25, 2008. Standing behind Bush

are, from left to right, former President George H.W. Bush; Rep. James Sensenbrenner,

R-Wis.; Cheryl Sensenbrenner; Rep. Steny

Hoyer, D-Md.; Rep. Buck McKeon, R-Calif.;

Rep. Jerrold Nadler, D-N.Y.; Sen. Tom Harkin, D-Iowa; Sen. Mike Enzi, R-Wyo.; Rep. Jim

Langevin, D-R.I.; and U.S. Attorney General Michael B. Mukasey.

restricted” from doing the major life activity. Individuals with disabilities “were basically caught in a catch22,” Imparato said. “If you did fine with corrective measures, the courts said that you weren’t disabled. And the evidence you submitted to demonstrate the level of your impairments was used against you on whether you were qualified for the position in question.” Other cases affected the ability of individuals with disabilities to utilize services specifically designed for them. Imparato related one case in which an individual with an

intellectual disability showed up for a job interview with a job coach. But the prospective employer said the coach could not attend the interview even though the job seeker viewed the coach as a reasonable accommodation under ADA. The court sided with the employer, questioning whether thinking was a major life activity for purposes of the ADA. The Sutton v. United Airlines Inc. case reflected “an incredibly activist Supreme Court decision,” he said. “The Court really went out of its way to disregard the three federal agencies charged with enforcing the ADA, all of whom had said in regulations that you should look at someone in their natural state when you are determining if they are impaired enough to qualify for protections under the ADA. By ruling against this interpretation, the Supreme Court created nine years of decisions where most people with epilepsy, diabetes, depression, and a wide range of other conditions were losing on the issue of whether they were disabled enough to challenge employment discrimination.” As applied in real-world situations following these decisions,

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127

“an individual’s impairment did not necessarily constitute a disability,” according to The Viscardi Center’s Kemp. To a point, he noted, advocates had expected some court challenges to the 1990 law. “This is what happens in any civil rights law,” he said. “There’s always a first round of legal tests working their way through courts. But in this case, the disability community was losing almost all of these cases.” By finding loopholes in the ADA, Kemp said, “The burden of proof had decisively changed. An individual had to prove they had a disability.” Appealing to Congress With concern mounting about these court challenges, advocates for the disability community mounted new efforts to convince Congress to amend the law and clarify the ADA’s original intent. “When these rulings came down, many of us in the disability community felt we had to do something,” Imparato said. “A lot of people who Congress thought they were protecting through ADA were not getting protection.”

Key supporters of the ADA Amendments legislation celebrate the passage of the bill in the Senate. Pictured from left to right are Sen. Tom Harkin; Rep. James

Sensenbrenner; Sen. Orrin Hatch; Randy Johnson, U.S. Chamber of Commerce;

Cheryl Sensenbrenner; Rep. Steny Hoyer;

Nancy Zirkin of the Leadership Conference on Civil and Human Rights; Mike Eastman, a key negotiator for the U.S. Chamber of Commerce; and Andrew Imparato.

One of the first attempts was in 2004, when an independent federal council, the National Council on Disability, released “Righting the ADA,” a report that outlined how courts had undermined the original aim of the 1990 law. The Council, whose job was to advise Congress and the White House, proposed legislative fixes to invalidate the court rulings and reinforce ADA’s initial provisions. Soon after, a coalition of organizations representing the broad disability community launched an effort to pursue a legislative remedy. According to Imparato,

one key player was Rep. James Sensenbrenner, a Wisconsin Republican who chaired the House of Representatives’ Judiciary Committee when the process began. On the last day of the 2006 congressional session, when lawmakers announced priorities for the next congressional term, Sensenbrenner introduced the ADA Restoration Act to overturn the recent court rulings. Rep. Steny Hoyer, a senior Democrat from Maryland, was a co-sponsor. After a new Congress convened the next year, the legislation was re-introduced on the anniversary of the ADA’s passage and bipartisan negotiations got underway. “We started out with a lot of Republican support right off the bat,” said Imparato. He credited Sensenbrenner as well as his wife, Cheryl, who was a board chair of AAPD at the time and sent handwritten notes to many of her friends in the House Republican caucus. “We were able to get a lot of GOP support because of Cheryl Sensenbrenner,” he said. But the issue was far from resolved, as public hearings included

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129 witnesses for the disability community favoring the bill and those from the business community opposing the legislation. Most of the business witnesses believed the bill would go too far and impose new burdens on the private sector. But the unfairness of many of the court rulings generated support for the disability community, Imparato said. At public hearings alongside business leaders, “Our witnesses were more compelling,” he said. “We had so many bad cases that it was easy for us to explain to members of Congress that the court rulings were ridiculous.” At this point, the disability community and leaders from top business groups began meeting in February 2008 to find common ground. Participants in these discussions included representatives from AAPD, the National Council on Independent Living, the Bazelon Center for Mental Health Law, the National Disability Rights Network, the Epilepsy Foundation, and others. From the business community came the U.S. Chamber of Commerce, the National Association of Manufacturers, the HR Policy Association, and the Society for Human Resource Management. Business leaders joined the discussions because “everyone needs to know who’s covered under the ADA,” Silverstein said. “They did it for defensive reasons, but they also took a very balanced approach,” said Kemp, whose task was to convince the private sector that any clarification of the law would not pose undue harm to business. Thomas Donohue of the U.S. Chamber of Commerce was taking a proactive role, recognizing that the law’s original intent had merit. “We built a bipartisan coalition and got bipartisan support,” Silverstein added. According to Imparato, the main focus of the negotiators was to reiterate the protections of the 1990 ADA but to not exceed it significantly. Business negotiators “were fine with declaring someone disabled if they had epilepsy, but not if they had a common cold,” he said. The tone of the negotiations was “a reflection of that common focus.” By May 2008, the final negotiated bill did restore a broad definition of disability for the ADA. It also clearly delineated what constitutes a “major life activity” to include having problems with a bodily function and specifying those bodily functions. The bill was presented to bipartisan supporters in Congress. Once the legislation reached Capitol Hill, Imparato said, another key advocate for the disability community was Tony Coelho, a former majority whip of the House of Representatives and a person with epilepsy who chaired the board of the Epilepsy Foundation of America at the time.

THE ADA AMENDMENTS: AN OVERVIEW The ADA Amendments Act of 2008, also known as Public Law 10-325, took effect on Jan. 1, 2009. Passed by Congress and signed by then-President George W. Bush, the legislation reversed court decisions and some regulations of the Equal Employment Opportunity Commission related to interpretation of the 1990 Americans with Disabilities Act. According to the U.S. Department of Labor, provisions of the law: • Maintain the definition that a disability is an impairment limiting at least one major life activity; • Expand the regulatory definition of “substantially limits” a major life activity in a way that, advocates say, makes it easier for those with disability to show they are protected under the law; • Prohibit the consideration of “mitigating measures,” or corrective actions including assistive technologies and an individual’s medications, in looking at whether an impairment can limit someone’s major life activities; • Expand the definition of “major life activities” to include seeing, hearing, eating, sleeping, bending, breathing, reading, thinking, caring for oneself, and working; and • Include under “major life activities” a list of major bodily functions that include the immune system and normal cell growth as well as digestive, bowel, bladder, neurological, brain, respiratory, and circulatory functions. In essence, said Kemp, the legislation ensured that the term “major life activities” was, in the end, “not open to interpretation.” It also expressly invalidated U.S. Supreme Court cases such as Sutton v. United Airlines Inc. that advocates believed had served to limit protections for those with disabilities. One item that some advocates wanted in the 2008 law – but ultimately was not included – was language guaranteeing equal access to the Internet among those with disabilities. However, this issue was largely addressed in 2010 when Congress passed and President Barack Obama signed the Equal Access to 21st Century Communications Act, or Public Law 111-260. That law’s intent was to guarantee access to the Internet and online services for those with disabilities. According to the Federal Communications Commission, this law ensures that smartphones are easily accessible and usable by those with disabilities. Another key provision is that individuals with disabilities, particularly those with sight and hearing challenges, can access video programming on the Internet complete with captioning and other assistive devices. n

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131

Congratulations

Photo courtesy of Sandy Finucane

ADA

The team of individuals that worked to secure passage of the ADA Amendments

legislation in the House of Representatives poses on the steps of the Capitol after the bill’s House approval. Among those pictured are Nancy Zirkin (front row,

center); Chai Feldblum, then a law professor representing the Epilepsy Foundation and presently commissioner of the Equal Employment Opportunity Commission

(just behind Zirkin); Sandy Finucane of the Epilepsy Foundation (far right); Randy Johnson of the U.S. Chamber of Commerce (directly behind Feldblum); Mike

Eastman (to the right of Johnson); and former Congressman Tony Coelho (last row).

Ultimately, the plan passed by unanimous consent in the Senate and by voice vote in the House. “To overturn four Supreme Court cases and have it pass in both chambers without a roll-call vote was astonishing,” Imparato said. Looking back, advocates for the disability community found much to celebrate. “It was a compromise that was healthy and fair,” Kemp said. In the end,

“Everyone needed to know who would be covered by this law.” Later federal regulations supported the intent of the 2008 law, and the disability community has been generally pleased with the post-2008 environment. “It doesn’t mean that we love every court decision since 2008,” Imparato said. “But the problems we had with cases just being thrown out of court have gone away.” n

132

wounded warriors New Programs, new technologies, and new attitudes support military personnel with disabilities story By J.R. Wilson

he term “perfect storm” typically refers to a major catastrophe resulting from an unusual combination of factors. But for wounded warriors returning from Southwest Asia since 9/11, it has meant a culmination of new technologies, new attitudes, new diagnoses, new treatments, new prosthetics, and the rapid growth and expansion of adaptive reconditioning. In the wake of every war prior to Operation Desert Storm in 1991, warfighters with disabilities were most likely to be seen in public on crutches, in wheelchairs, or using prosthetics whose technologies hadn’t advanced in 50 years. Implementation of the Americans with Disabilities Act (ADA) in 1990 and the rise of sports as part of warfighter rehabilitation began to change that in the quarter-century since. The past decade especially has seen the military services radically change their thinking concerning wounded warriors, encouraging those who have been disabled in military service to remain in the armed forces if at all possible, should they so choose. Much of this is due to a massive research and development effort by the Department of Defense (DOD) and Department of Veterans Affairs (VA) in medicine and technologies serving people with disabilities, from computer-enhanced

prosthetics to brain and spinal cord injury research. But, more importantly, accompanying these medical advances has been a sea change in the way the military views its “wounded warriors” and what they can bring to the fight. Kirk Bauer, executive director of Disabled Sports USA (DSUSA), called the change in attitude toward people with disabilities, by both the public and the military, “nothing short of revolutionary. The military has done a 180-degree turn, now working hard to keep highly trained personnel in the service, sometimes even returning to combat.” The DOD estimates that nearly 1,600 service members have lost limbs since the start of the wars in 2001, where improvised explosive devices (IEDs) have often been the enemy’s weapon of choice. This peaked, according to a Congressional Research Service report, in 2011, when 240 deployed servicemen and women had at least one arm or leg amputated. More than 80 percent of amputations have involved injuries to a lower limb. In the early years of the Iraq and Afghanistan conflicts, wounded warriors who had lost a limb were regularly fitted with prosthetics, rehabilitated, and medically retired. Prosthetics was largely the responsibility of the Veterans Health Administration (VHA), which, as the

health care branch of the VA, saw its mission as helping veterans adjust and thrive as civilian amputees. The VA and its partners still play a leading role today in prosthetics development, but now the DOD also plays a major part. In 2004, the Pentagon contracted with a prosthetics company to design a “military-grade” prosthetic knee that could enable skilled and capable service members to return to duty whenever possible, and these efforts, and the change in mind-set they reflected, have paid off. A 1995 study found that only 11 of 469 U.S. amputee soldiers (2.3 percent) returned to duty in the 1980s with amputation levels that included partial foot, partial hand, and transtibial (below knee). Today, that has increased to 16.5 percent. According to statistics made available by the Pentagon in the spring of 2012, more than 300 deployed service members who suffered the loss of a limb returned to active duty – and of those, more than 50 returned to Iraq or Afghanistan. Such numbers would not have seemed possible just a few years ago. The change of attitude regarding disabilities and those seeking help is perhaps most definitive among 21st century wounded warriors, who not only seek but expect cutting-edge technology and medical care, including advanced,

U.S. Army photo by Sgt. Manda Walters, 129th Mobile Public Affairs Detachment

133

increasingly robotic prosthetics. Nor are they content to live out their lives as “disabled.” Instead, they push themselves and the technologies available to them to levels of recovery and activity never before seen – or possible.

After sustaining a traumatic brain injury

during deployments to Iraq, U.S. Army Sgt. Nathan Martucci, pictured here in March

2013, was a Warrior Transition Unit (WTU) soldier at Joint Force Base McGuire-Dix-

Lakehurst in New Jersey. Martucci worked to improve multiple facets of his life

with the help of the WTU’s medical staff.

Warrior Transition Programs Wounded warfighters since 9/11 have been served through four service-specific programs: Army Wounded Warrior (AW2), the Marine Corps’ Marine For Life program and Wounded Warrior Regiment, the Air Force Wounded Warrior Program (AFW2), and the Navy Safe Harbor program. Due to the heavy ground combat nature of Operation Iraqi Freedom and Operation Enduring Freedom (Afghanistan), the vast majority of the current generation of wounded warriors has come from the Army. Since its creation in 2004, AW2 has worked with thousands of soldiers, veterans, their families, and caregivers. To qualify for AW2, warfighters must have suffered wounds, illness, or injuries in the line of duty after Sept. 10, 2001, or have received or expect to receive a rating of 30 percent or higher from

the Integrated Disability Evaluation System (IDES), using an expanded list of disabilities or a combined 50 percent IDES rating for any other combat/combat-related condition. The expertise AW2 professionals gained helping the most severely wounded, ill, and injured warfighters was applied to policies and guidance for those recovering at Community Care Units (CCUs), and Warrior Transition Units (WTUs), hands-on components of AW2 offering a standardized framework of care and support as soldiers transition to the next stage of their lives, whether back to active duty or to civilian status. Marine For Life is a nationwide program assisting Marines returning to civilian life, Marine reservists, and all Marine veterans and sailors who have served with Marine Corps

units. It also is designed to help them remain part of the Corps family – an expression of the old ethos “Once a Marine, always a Marine” – becoming both members and beneficiaries of personal and professional networks of Marine veterans. The organization’s headquarters at Marine Corps Base Quantico, Virginia, directs some 100 Corps reservists working throughout the nation to accomplish the Marine For Life motto: “Connecting Marines with Opportunity.” It also supports a component Marine for Life Injured program, providing information, advocacy, and assistance to injured Marines, sailors injured while serving with Marines, and their families. Support begins at the time of injury and continues through return to duty or transition to civilian life and care from the VA. As with the other service programs for wounded warriors, AFW2 was established to ensure a smooth transition from military to civilian life for personnel with combat-related injuries or illnesses requiring long-term care. In 2011, the RAND Corporation sent surveys to 872 AFW2 enrollees regarding their use of U.S. Air Force support services, seeking to better understand their needs, and found that 95 percent had received at least one AFW2 service and 20 percent used the more recently implemented Recovery Care Coordinator program. The majority from all three groups reported a high level of overall satisfaction. Navy Wounded Warrior-Safe Harbor (NWW-SH) coordinates nonmedical care of seriously wounded, ill, and injured sailors, Coast Guardsmen and women, Merchant Marines, and their families through proactive leadership to optimize individually tailored recovery, rehabilitation, and reintegration efforts. A voluntary component called the Anchor Program provides a support network that matches sailors and

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135 All that is a reflection of the growing number of TBI cases diagnosed, including recognition that many patients from pre-9/11 conflicts had gone undiagnosed for years. DVBIC collaborates with military, government, and civilian researchers to develop state-ofthe-art treatment, innovative clinical research, and support for force health protection services. DVBIC conducts pre-deployment screenings and briefings for warfighters and health care providers going into theater, and oversees data gathering and research programs. DVBIC also treats active-duty and veteran victims of mild to severe TBI, from the moment of injury to their return to duty or reintegration into civilian life. Photo by Sgt. Devin James

ADA, Vets with Disabilities, and Adaptive Reconditioing

Coast Guard personnel with local volunteer mentors during the critical transition from uniform to civilian life. “NSHF [Navy Safe Harbor Foundation] wants to ensure that every service member is given an opportunity for full recovery by providing financial assistance, respite care, special equipment, transportation, recreational opportunities, and other services,” according to the organization’s mission statement. In 1992, Congress created the Defense and Veterans Brain Injury Center (DVBIC) as the TBI operational component of the Defense Centers of Excellence for Psychological Health and Traumatic Brain Injury (DCoE), with six lead centers at major military medical centers around the country. By

U.S. Army Major Robert Eldridge, 2nd Battalion, 7th Special Forces Group

executive officer, prepares to mount a

Mine Resistant Ambush Protected vehicle in Kandahar province, Afghanistan,

on May 7, 2012. Eldridge was injured

while on a combat patrol in Shkin, Patika province, Afghanistan, on Dec. 17, 2004, when the vehicle in which he was riding was struck by an anti-tank mine. His

left leg was soon amputated in order

to save his life. According to Pentagon data from spring 2012, more than 300

deployed service members who lost limbs returned to active duty, and several of

them returned to Iraq and Afghanistan.

2014, those had grown to 10 military facilities and five VA hospitals in the United States and the Landstuhl Regional Medical Center in Germany.

Physical activity in which wounded, ill, and injured warfighters regularly participate to support their physical and emotional well-being is known as adaptive reconditioning, and it can play a significant role in service members’ rehabilitation, recovery, and reintegration efforts. One popular component of adaptive reconditioning has been the Warrior Games, in which the DOD and U.S. Olympic Committee Paralympic Military Program have partnered since 2010 to enable athletes with disabilities from all branches of the military to compete in seven sports: archery, cycling, shooting, sitting volleyball, swimming, track and field, and wheelchair basketball. A new event debuted in September in the United Kingdom – the Invictus Games – where the U.S. team competed against 13 others from around the world. The United States sent 98 male and female athletes (22 Army, 20 Marines, 22

Great people deserve great accommodations.

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137 Ed Rykard (left), chief of tactical gaming for the Joint Multinational Simulations Center, or JMSC, trains Staff Sgt. Ely

Chagoya (right) on gaming simulations

administration. Chagoya was participating in the Career and Education Readiness

partnership between the JMSC and the

Warrior Transition Battalion-Europe, Bravo Company. The Career and Education Readiness program partners Warrior

Transition Unit soldiers who are separating from the military or re-classing within

it with civilian and military employers to build or strengthen the soldiers’

Photo by Capt. Cecilia Clark

skill sets in preparation for transition.

Navy, 22 Air Force, and 12 from U.S. Special Operations Command), 53 active duty and 45 veterans, the former ranging in rank from corporal to colonel. Their wounds, illnesses, and injuries ranged from post-traumatic stress disorder (PTSD) and TBI to spinal cord injuries, autoimmune diseases, and amputations. The National Disabled Veterans Winter Sports Clinic, a joint effort of VA Recreation and Voluntary Services and the Disabled American Veterans (DAV) organization, will celebrate its 28th year by bringing nearly 400 veterans with TBI, spinal cord injuries, orthopedic amputations, visual impairments, certain neurological conditions, and other disabilities to Snowmass, Colorado, from March 29 through April 3, 2015. More than 200 certified ski instructors for people with disabilities – including several current and former members of the U.S. Disabled Ski Team – will instruct participants in Alpine and cross-country skiing, as well as rock climbing, scuba diving, kayaking, and snowmobiling.

“For over a quarter-century, this exceptional physical rehabilitation program, held in the mountains of Colorado, has transformed the lives of America’s most severely wounded, injured, and ill veterans. Often referred to as ‘Miracles on a Mountainside,’ it helps severely injured veterans rebuild their confidence, compensate for their injuries, and regain balance in their lives,” DAV National Commander Joseph W. Johnston told Senate and House Veterans Affairs committees in February 2014. “Veterans from all eras have attended our clinics, including many who were wounded and injured in the Iraq and Afghanistan campaigns. “Often, this seminal event offers some veterans their very first experience in winter sports and gives them motivation to take their personal rehabilitation to a higher level than they may ever have imagined. Participants have included veterans with multiple amputations, traumatic brain and spinal cord injuries, severe neurological deficits, and even total blindness. For anyone

who has attended ‘Miracles on a Mountainside’ and observed our participants and their efforts, it is an inspiring sight, unlike anything you will see anywhere in the world. I can assure you, miracles do still occur.” Implementation of the ADA began removing physical access barriers just as the national and international sports programs for athletes with disabilities began to attract public and media attention – and, through the Paralympics and events still being created 25 years later, opened new opportunities for veterans with disabilities. Radically advanced prosthetic feet and legs, faster and more accurate diagnosis and treatment of TBI and PTSD, and a commitment by DOD, the individual services, the VA, and athletes – combining to emphasize and explore the rehabilitative benefits of sports – have changed the lives and prospects of thousands of veterans, as well as those who declined medical discharge and remained on active duty. “In 2003, we began increased involvement with the VA and other hospitals for disabled veterans and their families. The veterans from this war have really driven a lot of the demand for high-activity, high-risk sports,” DSUSA’s Bauer said. “The

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139

Cpl. Justin Gaertner of

the Special Operations Command team

celebrates his first place finish in a hand cycling

event at the 2014 Warrior Games at Fort Carson,

Colorado, Sept. 29, 2014. DOD News photo by EJ Hersom

Adaptive reconditioning and events like the

Warrior Games can

play a significant role in service members’

rehabilitation, recovery, and reintegration.

resources DOD has put into developing the latest prosthetic devices has given greater independence to veterans, but also affected the entire field of wheelchair sports. The Paralympic team [that] went to the winter games in Russia – about 80 Americans – comprised about a quarter wounded warriors, so they are making up an increasing percentage of participants.” Bauer emphasized that while most media attention has gone to those who have acquired disabilities in combat since 9/11, DSUSA and other organizations also are reaching out to – and finding a receptive audience in – older veterans from earlier eras. “A lot of attention has been given to veterans injured in the wars in Southwest Asia – and rightly so. But the numbers are actually a quite small percentage of the total disabled population we serve – about 3 percent. If

you look at the totality of injured coming out of the wars in Iraq and Afghanistan, we’re talking about 50,000 wounded, about 15,000 of whom have severe life-changing injuries. The total number of amputees is less than 2,000, visual is under 600, and there are about 7,500 with severe TBI,” he said. “I’m an amputee from Vietnam and there were three times the number of amputees from that war than from Iraq and Afghanistan combined. But I have never witnessed so many multiple amputations because of the large IEDs the enemy used in Southwest Asia – hundreds of double and triple amputees.” Ann Cody, a member of the International Paralympics governing board and a winner of four silver medals at the 1988 Paralympics Games in Seoul, South Korea, then a gold and a bronze in Barcelona in 1992 – all in wheelchair racing

– says efforts to help veterans with disabilities provided the spark for the modern Paralympics. “The credit for creating the Paralympics goes to the UK, with the whole concept coming about as a result of World War II and severely injured British and American soldiers,” she explained. “There were a lot of spinal cord injuries from that war, but the use of drugs such as penicillin also increased the number of survivors and greater efforts were made to heal those individuals, including using sports as part of their rehab. “After 9/11, U.S. Paralympics and VSOs ensured our wounded military personnel had access to competitive sports opportunities to incorporate those into their rehabilitation effort. It was a much more coordinated effort and focus than in the past. As a result, injured veterans from Iraq and Afghanistan competed

141

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t 5 2

the s e t bra ry

a s r e v a anni

Photo by Patrick Onofre

he of t

in Beijing, more in London, and quite a number in Russia. The UK and other nations also have been developing similar programs for their disabled veterans.” This generation of wounded warriors are the product of war with an historically low level of combat fatalities, but with onethird of those injured unlikely to have survived in any previous war. They bear a higher-than-usual percentage of disabling wounds, but due to new surgical and treatment technologies, advanced prosthetics seemingly taken straight from science fiction, and a vast change in mind-set on the part of those who command them, they are wounded warriors who refuse to be labeled or live as “disabled.” An example is former Marine Gunnery Sgt. Brian Meyer, who lost his right leg above the knee, his right hand above the wrist, and three fingers on his left hand while disarming a bomb in Afghanistan in 2011. The then29-year-old underwent multiple surgeries, was outfitted with cutting-edge prosthetics, and learned to walk again, ride his motorcycle, and go hunting with both rifles and bows and arrows.

Col. T. Shane Tomko, commanding officer of the Wounded Warrior Regiment, addresses the Warrior Games All-

Marine Team at the Olympic Training

Center in Colorado Springs, Colorado. The Marine team is comprised of both active duty and veteran wounded, ill,

and injured Marines who are attached to or supported by the Wounded

Warrior Regiment, the official unit of the Marine Corps charged with providing

comprehensive non-medical recovery

care to wounded, ill, and injured Marines.

He refused to have wheelchair ramps installed in his home and only reluctantly accepted a handicap parking permit. “I focus on what I have left, not what I lost,” he told the Associated Press (AP). One of his doctors, Cmdr. Peter Shumaker, chief of dermatology at Naval Medical Center San Diego, told the AP it was a privilege to work with warfighters such as Meyer, “because they’re young and motivated and healthy and they can go farther than we ever thought. They don’t want to just walk; they want to do things that their colleagues are doing, their friends are doing.” n

complex rehab technology Is crItIcal to the success of the aDa Americans with disabilities deserve access to the assistive equipment needed to address their medical needs and maximize their function and independence. Individually configured wheelchairs, positioning systems, and other adaptive equipment enable people to fully participate in their communities and utilize the positive changes created by the ADA. But access to this equipment must be protected. NCART works to establish and maintain the appropriate coverage, quality standards, and funding to ensure people are able to get this specialized equipment and the related supporting services. As the country celebrates the 25th anniversary of the ADA take a moment to learn about the access challenges facing Complex Rehab Technology and what you can do to help by visiting

www.ncart.us.

142

A Level Playing Field

The Evolution of Rehabilitative, Recreational, and Competitive Sports for people with Disabilities Story by J.R. Wilson

n the quarter-century since enactment of the Americans with Disabilities Act (ADA), an expanded number of sports programs have arisen – in the United States and globally – dedicated to people with disabilities and giving them access to a growing number of sports, including some “high risk” activities, such as rock and mountain climbing, snow and water skiing, high-speed cycle racing, and scuba diving. Sports for individuals with disabilities did not begin to attract serious interest until they were used as a rehabilitative therapy for the thousands of wounded soldiers returning from World War II and for civilians who had been impaired during the conflict – especially those injured during the London Blitz. Sports as rehabilitation later grew into recreational sports and then into competitive sports. The most important of the competitive sporting events for people with disabilities was the Stoke Mandeville Games, organized to coincide with the 1948 London Olympic Games by Sir Ludwig Guttmann, an escapee from Nazi Germany who became a practicing neurosurgeon at England’s Stoke Mandeville Hospital. Beginning then with wheelchair athletes, the Stoke Mandeville Games eventually evolved into the modern Paralympic Games, governed by the International Paralympic Committee

(IPC). The Paralympic Games are closely tied to the International Olympic Committee (IOC) as of 2000, as well as a wide range of other international sports organizations. The movement expanded to those with intellectual disabilities with a series of summer camps organized by Eunice Kennedy Shriver in 1962. Shriver had firsthand knowledge of the difficulties that individuals with intellectual disabilities faced at that time: her older sister, Rosemary Kennedy, to whom Shriver was very close, was born with an intellectual disability. Shriver grew up well aware of the limited programs and activities available for children and adults with intellectual disabilities, but her experience growing up with Rosemary and playing sports together showed her that when given the same opportunities as everyone else, people with intellectual disabilities could accomplish much. She started Camp Shriver in her backyard as a place for young people with intellectual disabilities to excel through participation in a variety of sports and physical activities. In 1968, sports for those with intellectual disabilities grew into the first International Special Olympics, held in Chicago, Illinois. About the same time, Disabled Sports USA (DSUSA) was created – originally as the National Amputee Skiers Association – to help rehabilitate disabled warfighters. In the

nearly half-century since, DSUSA has grown into one of the largest multi-sport, multi-disability organizations in the United States, with sports programs for more than 60,000 wounded warfighters, youth, and other adults each year. “We have seen a very dramatic increase in the opportunities and types of sports that have become available to people with disabilities,” DSUSA Executive Director Kirk Bauer said. “What we have seen since the ADA is facilities have become much more accessible, which of course is of great benefit to all disabled persons. That includes hiking trails, biking trails, fishing piers, etc. “What we have seen less of – and the challenge of this century – is a greater emphasis on programmatic accessibility. Persons with disabilities almost universally can now access bathrooms, facilities, pools, etc., but often the sports available to them have remained limited. We see that as an area that still needs a lot of growth and work.” As a result of the ADA, he added, lack of access to facilities is no longer a serious problem in the United States, especially when DSUSA offers its support in making improvements. “The ADA is a good backdrop because the owners and operators are aware of the law and we can offer to help them become accessible to this niche population,” he

Photo courtesy of the International Paralympic Committee

143

said. “With the ADA, they are more willing to work with us as a partner. Also partly due to the ADA, I’ve seen nothing short of a revolution in the adaptive equipment developed to level the playing field for those with disabilities. “We now offer 40 different sports to those with severe disabilities, including snow and water skiing, rock climbing – one of [our rockclimbing participants] is a quadruple amputee – scuba and skin diving, and so on, all enabling individuals with disabilities to participate. The ADA provided more opportunities for participation and the participants demanded this kind of equipment, which companies sprang up to

The national teams of Brazil and China

compete in sitting volleyball at the 2012 Paralympic Games in London.

produce. For example, I took a team of double-amputees up Kilimanjaro, 19,000 feet, which no one would have thought possible only a few years ago. That’s an extreme example of what is possible now.” The first Paralympics were held in 1960 in conjunction with the Rome Summer Olympics, but without the official support or cooperation of the IOC. An official partnership agreement was signed in 2000 to ensure, starting with the 2008 Beijing

Games, that all future Olympics and Paralympics would be organized by the same host. But host cities moved more quickly and began organizing the games, loosely but in a joint fashion, beginning with Seoul in 1988 and again in Barcelona in 1992. This was not the case for the Atlanta Games in 1996, the first games held in the United States after the ADA was in place. When the Atlanta Committee for the Olympic Games refused to organize the Paralympic Games, local and national disability and sports organizations mounted a campaign to secure the right to host the Paralympic Games in Atlanta. The games were organized

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independently from the Olympic Games; however, marketing, facilities, branding, and fundraising agreements were signed to ensure that Olympic facilities would be used for the Paralympics. All the new construction in Atlanta was required to meet ADA guidelines for the Olympic Games, which it did, and in the 10 days between the end of the Olympic Games and the start of the Paralympic Games, additional accommodations, including more ramps and seating, were made in preparation for the higher-thanaverage number of individuals with disabilities attending the events, both as athletes and spectators, as well as other professionals with disabilities.

A match of wheelchair basketball takes place during the 1954 Stoke Mandeville Games. The Stoke Mandeville Games evolved into the modern Paralympic Games.

A legacy from the Atlanta Paralympics was BlazeSports America, which grew from a program helping youth with disabilities in Georgia to a national network of more than 65 clubs in 29 states and Washington, D.C., and then was transformed into a Paralympics sports club network several years ago. Since then, BlazeSports has returned to a concentration on Georgia, but with

expanded programs for warfighters going through the military’s Warrior Transition Units (WTUs) at three Georgia bases. The WTUs provide personalized support to wounded, ill, and injured soldiers who require at least six months of rehabilitative care and complex medical management. Jeff Jones, Sport & Community Programs director for BlazeSports America, was a coach in the 1988 Paralympics in Seoul and team leader for the 1992 games in Barcelona and 1996 games in Atlanta. “I don’t have a disability, but as a coach have gotten into a wheelchair for basketball, softball, and other sports, plus adaptive

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Photo courtesy of Special Olympics International

147

skiing. It’s a lot easier to work with these sports if you have spent some time trying them yourself,” he explained, but added some sports still have not been fully opened to all athletes with disabilities. “Soccer is available only to those with head injuries; they have not provided an opportunity for amputees, which is becoming more popular because of state-of-the-art prosthetics. “The technology out there today has opened a lot more doors for a lot more people. When I went to school, the textbooks said abovethe-knee amputees would never be able to run and most would be in wheelchairs – but today we have double amputees participating in running, skiing, etc. Outside the Paralympics, adaptive equipment now allows amputees to bowl, water ski, and do many other things that would have been impossible even 20 years ago.” Jones credits the ADA with significantly improving the lives of people with disabilities, not only in sports but with respect to employment and other areas of life. “Our work has been related to sports facilities – accessibility to

The Special Olympics grew out of Camp

Shriver, an event started by Eunice Kennedy Shriver as a place where young people

with intellectual disabilities could compete and excel in a variety of physical activities.

pools, fitness centers, golf carts – things that have directly included the access of disabled persons to sporting events, as participants or observers. The ADA has helped provide opportunities for them to be a lot more active and lead a healthy, active lifestyle, which fights a lot of secondary problems that come with disabilities,” he continued. “I think the ADA could do a lot more in dealing with accessibility issues related to sports and recreation facilities. Even so, the whole concept of accessibility in new facilities has been great, from the parking lot to the locker room. So ADA compliance has really increased access for anybody with a disability, which has come a long way in the past 25 years – and the acceptance of the Paralympics has increased with that.” Paralympic gold medalist Ann Cody, a member of the International

Paralympic Committee governing board and a former high school athlete disabled at age 16, competed in the 1988 Paralympic Games as a college junior, winning four silver medals in Seoul, South Korea, then a gold and a bronze in Barcelona in 1992. Seoul marked the first time in 24 years the Summer Paralympics took place in the same city as the Olympic Games. “I wanted to know what was still available to me as a person with a disability and I found there was a collegiate sports program at the University of Illinois, which was internationally renowned for its accessibility campus-wide as well as its sports programs. It created opportunities for young GIs with injuries who could not get around other campuses because of their disabilities,” she said. “When I got to Illinois, there were Paralympians studying and training there, which put me into an environment with athletes and coaches competing at those levels. Illinois still produces a large number of Paralympians in wheelchair basketball and racing. “I had been a team sport athlete prior to my disability, so I played wheelchair basketball in 1984; I did my first wheelchair race to maintain my conditioning in the off-season, starting in 1982, then discovered I really was a distance sport athlete. I did both for a while, but then concentrated on wheelchair racing. A lot of Paralympians discover different sports as they become involved with the Paralympics.” The 23th Olympiad in Los Angeles also saw the IOC incorporate events for athletes with disabilities into the quadrennial event. “The ADA has had a major impact on accessibility, not only in the U.S., but overseas as well. At the same time, the games themselves have changed the perceptions of disabilities in other countries. In Seoul, the games were critical to bringing

We open doors to accessibility

Ellen Thommesen and DSUSA

149 visibility and awareness to what is possible for people with disabilities,” Cody said. “Korean Paralympic groups credit those games with helping accelerate their efforts nationally.” Today, with advanced prosthetics, training, and individual determination, the Paralympic Games have grown to include almost every sport seen in the Olympic Games – and more – including: • Archery • Boccia • Canoe • Cycling • Equestrian • Football 5-a-Side • Football 7-a-Side • Goalball • IPC Alpine Skiing • IPC Biathlon • IPC Powerlifting • IPC Shooting • IPC Swimming • IPC Cross-country Skiing • IPC Ice Sledge Hockey • Judo • Long Jump • Rowing • Sailing • Sitting Volleyball • Table Tennis • Triathlon • Wheelchair Tennis • Wheelchair Basketball • Wheelchair Curling • Wheelchair Rugby • Wheelchair Racing • Wheelchair Fencing • Wheelchair Tennis “Some Olympic events are not widely enough practiced to be on the Paralympic schedule, but we do have the long jump, and some athletes, especially belowthe-knee amputees, are getting close to regular Olympians in the sprints. And there are some disabled athletes who have competed in regular Olympic events as well as the Paralympics.” For instance, Natalie du Toit of

Tim Brown, a Disabled Sports USA

participant, climbs a rock face. Advances in technology, including improved

prosthetics, have made it possible for

people with disabilities to participate in

a wider range of sports than ever before.

South Africa swam in both the Olympics and the Paralympics in Beijing in 2008. “We had 164 countries participating in London in 2012, where the Olympics usually have around 205. The winter games have a smaller number of countries competing in both games. In the 2014 winter games in Sochi, Russia, the Paralympic Games had 45 nations represented, with 550 athletes, compared with 2,873 in the Olympic Games. In the summer games in London, we had 4,237 Paralympians [compared to 10,568 in the Olympic Games].” Another major change in highlevel competitive sports for people with disabilities has been the participation of women, which grew from 24 percent at the 1996 Atlanta Paralympic Games to 36 percent in London 16 years later.

“The summer games are approaching a 50-50 split between male and female athletes, making incremental advances. The winter games have the same policies and focus in having events for women, but the percentage is not as high,” Cody said, adding there also has been a shift in the ages of athletes. “The average age in wheelchair basketball is probably slightly higher than the Olympics, but those ages are going down as we improve development of our youth pipeline. “Military Paralympians tend to be in their 20s, for example, but it still takes time to develop as an athlete. We use the same athlete development timetable of 10 years and 10,000 hours of training and competition in a given sport as the Olympics, although there may not be the depth of pool in some sports quite yet. But a former military member’s history of physical fitness also can apply to that. Our Paralympic swim team looks like our Olympic swim team in terms of age.” The ADA and growing visibility of events such as the Paralympics also have resulted in a growing interest in – and pressure to provide – sports for people with disabilities at the high school level. “U.S. Paralympics is working with the National Federation of State High School Associations and there are disability sports organizations working with those at the state level. We also have had a big push with the Department of Education to look into it and they sent letters to all schools in the country, reminding them of their responsibility to provide equal opportunities for students with disabilities to participate in sports at all levels, which in turn spurred a lot of action at the state level,” Cody said. “Even in metro areas and with the ADA, students go to the district in which they live, not to special schools, so they may not have a lot

JANNIK BLAIR, men’s wheelchair basketball • 1 National Championship in wheelchair basketball for Alabama • 1 gold medal in the Paralympics • 1 gold medal in the World Championships for his Australian National Team

KAROLINA LINGYTE, women’s wheelchair basketball and tennis • 2 National Championships in wheelchair basketball for Alabama • 1 National Championship in wheelchair tennis • 1 European Championship in wheelchair basketball for her Lithuanian National Team

• 2 National Championships in women’s wheelchair basketball • 1 National Championship in men’s wheelchair basketball • 1 National Championship in wheelchair tennis • More than 20 student-athletes and coaches participated in the last Paralympics in London in 2012 and the World Championships this summer in South Korea and Canada. “I love the intensity and competitive nature that is bred into UA athletes! On court the boys always dig deep and get around like a horse upstairs.” — Jannik Blair

• Alabama athletes won gold medals for men’s and women’s wheelchair basketball at the London Paralympics and the World Championships in Canada and South Korea.

“I came to play wheelchair basketball at the University of Alabama and my expectations have been more than exceeded. Here at the Capstone I have not only been able to compete at a high level in athletics, but I also have received a world class education, with wonderful professors on a beautiful campus.” — Karolina Lingyte

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Army News Service photo by Lisa Ferdinando

151

Athletes from the 2014 Olympic and Paralympic Winter Games speak to the media

outside the White House before an East Room event honoring them hosted by President Barack Obama and first lady Michelle Obama, April 3, 2014. From left to right, Julie

Chu of Fairfield, Connecticut, who won silver with the women’s ice hockey team; Sage Kostenberg of Park City, Utah, who won a gold medal in slopestyle snowboarding; Jon Lujan of Littleton, Colorado, a Paralympics Alpine skier, former Marine Corps sergeant, and 2014 Winter Paralympic Games opening ceremony Team USA flag

bearer; Mikaela Shiffrin, from Eagle-Vail, Colorado, who won gold in women’s slalom; and Stephanie Jallen of Kingston, Pennsylvania, who competed in the Paralympic

Games in women’s Alpine skiing and won bronze in super-G and super combined.

of other students with disabilities with whom they can form teams. That is part of the discussion going on with the schools on doing things a bit differently, perhaps at the district level. But track and field and swimming are sports where students with disabilities could be integrated into the existing programs. More than a dozen states have wheelchair events in their high school track and field championship events, which spurred more action at the district level.” Disabled sports took another step forward in 2006 with creation of the Extremity Games by College Park Industries, a manufacturer of prosthetic feet, to give those with limb loss a competitive venue for “extreme” or “action” sports. Held

each summer in Orlando, Florida, the games include competitions in skateboarding, wakeboarding, rock climbing, mountain biking, surfing, motocross, and kayaking. Other organizations, such as Paradox Sports, later joined the effort to equip and help empower and inspire athletes with disabilities. As the ADA helped people with disabilities gain greater access to jobs, education, and other activities to which they had faced restrictions and barriers in the past, sports for those living with disabilities grew in number, size, media coverage, and public recognition. Sportsmen and women with disabilities began seeking – and winning – approval to participate in events not specifically designed for them, transforming

them from “disabled athletes” to athletes with disabilities. Moreover, their success, combined with revolutionary advances in prosthetics, have begun to blur the lines between those with disabilities and those without. “Today some amputees can play basketball with modern prosthetics, although the Paralympics only has wheelchair basketball,” Cody noted. “An amputee sprinter in London [the 2012 Olympics] was challenged for having an unfair advantage because he was using a prosthetic, but the Court of Arbitration for Sport ruled he could compete. In sports, the rules control whether a device or piece of equipment would provide an unfair advantage – and some robotic limbs are not allowed today. “People ask about whether the Olympic and Paralympic Games will ever merge. I think it is a possibility in the future, although not something we’re exploring at this time. In order to logistically combine the two, you would have to eliminate a lot of events, which would mean fewer opportunities for both Olympic and Paralympic athletes.” “I’m afraid efforts to prevent the disabled from participating in non-disabled-specific sports due to an ‘unfair advantage’ from their prosthetics will come before such athletes are actually allowed to participate,” Jones predicted – the replacement of physical barriers addressed by the ADA with barriers built by attitudes and administrative restrictions. “We hear more and more stories of people denied access due to a disability – and the administrators’ lack of understanding about both the disabled and the sport in question. So we are working on that at high schools and colleges around the country. Someday we hope the number of people trying to prevent opportunities for those with disabilities will drop to zero.” n

152

DISABILITY IN THE SOCIAL CONTEXT

CHANGING THE EQUATION DOMESTICALLY AND INTERNATIONALLY FOR PEOPLE WITH DISABILITIES STORY BY JAN TEGLER

or Americans with disabilities, the Americans with Disabilities Act (ADA) represents more than recognition of a population underrepresented and underserved by existing law or a prohibition against discrimination. Over the course of 25 years, the landmark legislation has changed expectations and attitudes inside and outside the disability community, and beyond American borders. What’s different? The ADA affirmed that Americans with disabilities deserve the same treatment as Americans who have no disabilities. More than cementing the conviction that individuals with disabilities should benefit from the same access and opportunities other Americans take for granted, it has also helped to make citizens with disabilities and disability itself more familiar to all, says Catherine Kudlick, professor of history and director of the Paul K. Longmore Institute on Disability at San Francisco State University. “It changed the equation from being accommodation for individuals out of generosity to a situation where everyone could have access whether or not we

know they need it. It became a rights-based issue, and that affects your social attitude. If you think access is your right versus a handout, you’re going to approach everything differently. “Non-disabled people see more disabled people on a regular basis because they now have improved access,” Kudlick said. “When people are more in your space and you’re encountering them more, they’re less mysterious, weird, or scary. There’s the possibility to interact with people you might never have interacted with before. That’s not as true in all areas of the country, but it is improved.” The Social Aspect of Disability The manner in which American society views people with disabilities and the way people with disabilities see themselves has been positively influenced by the ADA. Today, people are acknowledging that there is a “social aspect of disability,” Kudlick said. Previously, disability was seen only as a medical condition. “You were someone that had something unfortunate happen to you,” she explained. “You were an individual and you were dealing

with a pathology and you went to medical professionals and tried to get them to fix it to overcome it. Now, people are saying that it’s about social context, about the built environment, understanding prejudice, attitudes, and ideas as much as it is about the actual person and what’s ‘wrong’ with them. That’s the sea change in thinking. It’s fundamental and allencompassing.” Kudlick speaks with authority, having specialized in the history of medicine and disability issues, and having been born with cataracts that have affected her vision throughout her life. She notes that portrayals of people with disabilities in the media, particularly on film and in television, are beginning to change for the better, but adds that for every positive depiction, there are multiple examples that “set you back a hundred years.” Kudlick likens the evolution of disability rights under the ADA to the transition phase the women’s rights movement went through 40 years ago. Resistance to change in attitudes about people with disabilities, she argues, is, in part, due to the money riding on the older views of people with disabilities.

AP Photo/Nick Ut

153

“That’s what funds medical research and charities – all of those appeals that people make for charitable contributions for services or medicine. They’re based on old-fashioned views. The poor little blind girl who learns to see again or the Jerry Lewis Telethon – until the public turns around and says, ‘I’m not going to give money. This is repulsive,’ they’re going to keep putting out schlock.” One way to transform attitudes about people with disabilities is simply to interact with them, Kudlick stresses. Every semester as she begins the classes she teaches on disability, she asks her new students to fill out cards anonymously and ask whatever politically incorrect question they’d like to know about people with disabilities. “If you can’t ask it here, you’ll never know,” she says to her students. “I tell them that I’ll throw

Thomas Coleman speaks to media with

Nora Baladerian, Ph.D., executive director

of the Disability and Abuse Project, on July 10, 2014, in Los Angeles, California, to

propose full voting rights and access for people with disabilities. A Voting Rights

Act complaint was submitted on the same day to the U.S. Justice Department in Los Angeles. The Americans with Disabilities

Act has helped to shift the perspective of access for people with disabilities from being a handout to being a right.

in some of my own – those I’ve heard before – so that they’re not put on the spot. It gives me a sense of what they’re curious about.” According to Kudlick, her students “always want to know two things”: how many people are really cheating using disability placards for parking and what do disabled people want to be called?

“I think we want to acknowledge that these are people, people who have disabilities. People do struggle with language issues. Words like ‘ableism’ aren’t quite in our vocabulary yet. I think they will be within the next five to 10 years, especially as more and more people get older and are dealing with the prejudices around aging. “Those are exactly the same prejudices around disability because aging is a form of disability,” she continued. “As more people encounter prejudices, dismissiveness, and stigma, I think they’ll start using the term ‘ableism.’ I don’t think you can attribute that directly to the ADA, but it’s part of a general shift in society that has come along with it.” Kudlick acknowledges that the manner in which different disability communities wish to be addressed is an issue in flux. She points out that generally, individuals with

155 Kevin Bella, a coach at Mission San Jose High School in Fremont, California, who

is deaf, talks to members of the school’s football team. Increasing interactions between people with disabilities and

people without disabilities is one way to

AP Photo/Marcio Jose Sanchez

transform attitudes about disability.

disabilities do not like the term, “the disabled,” preferring to be called “disabled people” or “people with disabilities.” However, blind people don’t seem to mind being referred to as “the blind,” she observed. “It varies between people and circumstances. Someone in a wheelchair can be completely, helplessly disabled if they encounter a building with steps at the entrance but no access ramp. On the other hand, they can be utterly non-disabled if they’re in a movie theater that is accessible and they’re watching a movie. A blind person working at a call center doesn’t have a disability. They’re just doing their job. It’s all context.” Context is important when noting how opinions have changed inside various disabled communities since passage of the ADA. As Kudlick reveals, there’s a history worth knowing. “For a long period of time, the deaf community did not want to identify itself as being a community with a disability. They said, ‘We don’t have a disability. We are a linguistic minority.’ They didn’t want to be seen as people in need of help. They just wanted services or

accommodations for their language like a non-English speaker.” For illustration, she refers to the 1988 “Deaf President Now” protests at Gallaudet University in Washington, D.C. The university decided to appoint a hearing person as its seventh president, appointing the new leader in preference to two deaf candidates. The announcement sparked a week of protests demanding a deaf president be chosen to lead Gallaudet, the world’s first university for deaf and hard-ofhearing students. “That revolved around language politics and it was at the height of negotiations for passage of the ADA, getting people to sign on and write clauses into it to get groups interested. The deaf at Gallaudet were a very vocal minority who were very articulate, passionate, and on the national stage. Because of that, they probably had more impact than might have been the case if there hadn’t been that uprising.” Some outcomes come down to expectations, Kudlick said. The impacts of the ADA took time to be felt, she said, adding that expectations only take hold when reinforced.

“Most people don’t just wake up one day and feel that they are entitled to something that they didn’t have before,” Kudlick explained. “They need to see some sort of progress, some sort of change.” Change has undoubtedly occurred under the ADA and Kudlick says that “the world is immeasurably better because of it,” but she agrees with other observers that the act is still evolving and much more remains to be done. “The ADA doesn’t really fix prejudice,” she said. “It calls people on their prejudices. There’s nothing in place to inform people about stigmas. That’s what we need. The next phase is cultural change and putting mechanisms in place where people can start to value the contributions of people with disabilities, to think about disability as an opportunity for creative change for everyone.” The Economic Aspect of Disability Poverty is inextricably intertwined with disability, and an understanding of the economic issues faced by Americans with disabilities is of primary importance, Kudlick emphasizes. While the ADA put in place the legal framework for barring discrimination against disabled people, the act didn’t provide a ready remedy for the economic

156

EMPLOYMENT preparation

LEADERSHIP development

25 years of empowering youth with disabilities to lead productive lives

www.meaf.org

John Hoeven, then-governor of North Dakota, signs a children’s health care

coverage bill at the Capitol in Bismarck,

North Dakota, on April 17, 2007. The bill

was implemented to help provide health

coverage options for low-income families of children with disabilities. The bill was

an effort to address the ongoing issue of

poverty often faced by people living with disabilities.

in your interest as a disabled person to marry somebody wealthier than you if you want to get any kind of government assistance. The government will count the income of anyone that you marry against your eligibility for services and support. And it will take their money away from them. So for some, there’s no point in getting married, really. “Our health care system and insurance system don’t provide the aid needed,” Kudlick continued. “There are people with disabilities that basically have to work until they die if they have any kind of coverage at all. The

AP Photo/Marcio Jose Sanchez

ABILITY awareness

disadvantages people with disabilities face daily. “The gains of the ADA did nothing to address the poverty, the social and economic inequality that’s at the core of disability. People with disabilities tend to be fired first in difficult economic times. That’s part of the way people think, unfortunately. Disabled people are incredibly resourceful, but there’s nothing in the ADA that encourages society to understand that we’ve got this great resource that we should take advantage of. That would be the next step.” Kudlick points to an American social welfare system that does not offer a safety net for anyone, and especially not people with disabilities. She says Americans with disabilities must be destitute before they can avail themselves of services and government support related to attendant care at home or equipment for which insurance won’t pay, for example. The lack of support is damaging in many ways. “It’s to the point where there’s something known in the disabled community as ‘marriage disincentive,’” she said. “It is not

AP Photo/Marcio Jose Sanchez

157 second they quit, they lose major supports.” This is in contrast to Western Europe, where there is a social safety net for society at large, which also applies to people with disabilities, said Kudlick, who spent time studying and living in France. On the other hand, Europe lags behind the United States in terms of accessible built environments. “You have a basic safety net in Western Europe. You know you will have health care, attendant care services, a place to live, and what you need to eat. We have none of those guarantees. If you could combine what they have with what we have, you might have a perfect world with all the access and a safety net. People with disabilities in the U.S. are basically not taken care of by the government.” Disability Internationally Though there are clearly differences in how people with disabilities are treated inside and outside the United States, Judy Heumann, the U.S. Department of State Special Advisor for International Disability Rights, leaves no doubt that America is the leader in disability rights, and that the ADA is the bedrock of that leadership. “When you examine countries abroad including European states, Canada, Australia, New Zealand, Japan, and Korea, and the middle income and developing nations, you see that people look to the ADA as a touchstone of what legislation should look like, particularly in the area of antidiscrimination,” Heumann said. “They look to the U.S. as a country that has greater enforcement mechanisms where there’s a clear legislative commitment to laws that have teeth. So the ADA and other pieces

of legislation in America are seen as being very important to disabled people around the world.” The primary international manifestation of America’s commitment to disability rights is known as the U.N. Convention on the Rights of Persons with Disabilities, or the “Disabilities Treaty.” It embodies the ADA principles of non-discrimination, equality of opportunity, accessibility, and inclusion. According to Heumann, 151 countries have ratified the treaty so far, recognizing it as the primary mechanism through which countries are working to ensure that disabled people have full access to their communities and that abuses threatening the lives of adults and children with disabilities are addressed. Heumann concedes that there is a divergence in how nations that have ratified the treaty treat their disabled communities and what rights they confer. But she stresses that all share a keen interest in working to get meaningful legislation developed and implemented. Moreover, persons with disabilities traveling to the United States from abroad are uniformly impressed, she says. “They don’t feel the same type of stigma that they feel in their countries. There’s much more of an acceptance in the United States as a result of the ADA and other laws that have been on the books even before the ADA. The changes in America started fundamentally in the late 1960s and early 1970s. So the comment that people from other nations with disabilities don’t feel like they’re an outcast – like they frequently do in their own countries – is something we hear most often. “Here, they have a greater opportunity to move about society and participate in things they

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159

cannot be a part of at home,” Heumann said. “It could be anything from someone coming to the U.S. as a Fulbright student to study here or someone coming for our State Department program where foreign high school students can spend a year in an American high school. There have been a number of disabled people who have participated in that program. They’ve talked about how beneficial it was for them to learn – even indirectly – how our laws have had an impact for disabled people.” According to Heumann, many of the disabled citizens of foreign nations who have traveled to America carry home with them what they learn about disability rights. “I think it’s very important that whether disabled people have been here or not – if they’ve read about disability in America or have seen YouTube pieces or the film U.S. embassies are showing called Lives Worth Living – they understand that disabled Americans and other disabled citizens around the world are

Susan Rice, center, U.S. ambassador to the United Nations, signs the U.N. Convention on the Rights of Persons with Disabilities on July 30, 2009, as Senior White House

Advisor Valerie Jarrett, left, and Annebeth

Rosenboom, right, Chief of Treaty Section, Office of Legal Affairs of the United

Nations, watch. The U.S. Senate has not yet ratified the treaty, which embodies ADA

principles of non-discrimination, equality

of opportunity, accessibility, and inclusion.

activists working to educate and empower the disabled population about their rights.” Even countries not traditionally associated with civil rights are taking a more positive view of their disabled populations. China and Vietnam are showing a greater interest on the issue of inclusion of people with disabilities throughout society, Heumann notes, an indicator of more widespread progress. The State Department shares information on disability issues with other nations through American embassies, highlighting

the level of federal enforcement required by the ADA that gives the act teeth domestically. “Programs like the ADA Regional Technical Assistance Centers supported by the government for close to 25 years now are very important, not just at home but as an example abroad as well,” Heumann pointed out. “They show a strong commitment by the U.S. government to ensure that people can get questions answered about the ADA so that it’s not simply a piece of paper. People can really use it. Disabled people can understand what their rights are and employers can understand their obligations.” Though the Disabilities Treaty doesn’t specifically define disability, it does mirror the variety of disabilities covered by the ADA. Heumann said it must be up to each nation to craft its own definition, and the ADA can serve as an example to them. “While the treaty itself doesn’t have a definition of disability, it covers the same breadth as the ADA. If you think about the ADA, it deals with physical disabilities, sensory disabilities, and invisible disabilities. The treaty is aspirational. It doesn’t give other countries a specific definition of disability because countries need to develop their own definition. “I would say that any country that has ratified the treaty has done so in part because there is a disability community in that country pushing them. Through our programs, the State Department does its part to raise awareness. We’re seeing progress, countries developing and implementing laws granting rights for disabled people to go to school, benefit from construction that’s accessible, take advantage of inclusive education, accessible transportation, opportunities for employment, and more.” n

160

Next Steps

25 years after the passage of the ADA, the work of disability rights activists continues Story by eric seeger

s the Americans with Disabilities Act (ADA) turns 25, the people who fought for it – as well as an entire new generation of leaders – are very busy. This moment in history is particularly poignant for the disability rights movement, because many of the advocates today represent much of the timeline of activism. Protesters who remember the Rehabilitation Act in the 1970s are working alongside the framers of the Americans with Disabilities Act. And 40-somethings who were in high school when the ADA went into effect are seeing the first generation of people with disabilities who have always lived with this law reach adulthood. “It’s an exciting time,” said Mark Johnson of The ADA Legacy Project, about the cultural shift in advocacy today. “[Young adults] have grown up with this atmosphere all their lives. They don’t have to fight for equality; they just expect it. That’s where the next generation is taking us.” Helping the Memory Live On With the anniversary of this landmark legislation comes the opportunity to look inward at the movement, to review its history, and to set goals for the future.

As Johnson points out, an entire generation of adults has grown up knowing nothing but life under the ADA. They likely live more inclusively than others before them. But they might not know the real-life struggles that people with disabilities faced before the law came to their side. More important, they may not see how it supports everyday aspects of their lives – or how it still stands to be improved. Since 2012, The ADA Legacy Project has been raising awareness of this anniversary by coordinating events and creating educational materials on the disability rights movement; the resounding message: “Disability Rights are Civil Rights.” “Fifty years after the Civil Rights Act, we are not done,” said Johnson. “Twenty-five years after the ADA, we are not done either.” Starting in 2014, The ADA Legacy Project launched the ADA Legacy Tour, which includes a 37-foot RV wrapped in disability rights images, portal exhibits, and related materials. “This anniversary can bring attention to the past and remaining issues,” Johnson said. “If you’re a person with disability, I hope that you will come away with a sense of pride. If you don’t have a disability, I hope that you will come away not just more aware, but more involved.”

Protest and Civil Action A quarter-century after the ADA’s signing, there remains a valid need for public protest on behalf of people with disabilities. For more than 30 years, ADAPT has been organizing activists and leading nonviolent protests – including civil disobedience – across the country to raise awareness. In September 2014, hundreds of ADAPT protesters came to Little Rock, Arkansas, for four days of protest. Dozens of activists were arrested during the week for confronting individuals and groups that support the institutional bias. According to the group’s action report: State funding for long term services and support for seniors and people with physical disabilities is institutionally biased, with 69.7% of Medicaid funding going to nursing facilities. “That’s pathetic,” said Mike Oxford, an ADAPT Organizer from Kansas. “Seniors and people with disabilities don’t want to be forced into nursing facilities, but that’s what the state is doing.” ADAPT came to the state capital to show Arkansas’ citizens that they were paying a hefty sum for services that members of the disability community didn’t even want – that nursing homes had a grip on funding

161 Members of the disability rights

organization ADAPT talk with a member of the U.S. Park Police, center, in 2010 after

they handcuffed themselves to the fence

in front of the White House in Washington, D.C. The nonviolent direct action served to draw attention to the need for communitybased long-term care services for people

AP Photo/Alex Brandon

with disabilities and seniors on Medicaid.

even though Medicaid’s Community First Choice Option (CFCO) is supposed to allow for people to choose where and how they live. “Currently there is a nineyear waiting list for people with disabilities to move out of an institution and into their own community and CFCO can change that,” said Brenda Stinebuck, an ADAPT organizer in Arkansas. “Even though it makes fiscal and moral sense, [CFCO] has been under attack. Frankly, people are playing politics with our lives and our freedom; this has to stop!” Improving Representation in the Workforce “When was the last time you read a news article that talked about unemployment rates, and it mentioned the unemployment rates of people with disabilities?” Johnson asked. “Yeah. We still have a long way to go.” In recent years, there has started a marked push to get more Americans

with disabilities into the workforce. But it’s a complicated issue that must be fought on multiple levels far beyond the individual’s need to find a suitable job – and encouraging employers to look beyond the disability to see the person. This problem is the result of failures that include our health and human service system. Sarah Triano knows the situation all too well. As the executive officer for the California Committee on the Employment of People with Disabilities, she sees the statistics in her state: only 18 percent of residents with disabilities are employed, compared to 67 percent of the general population. California, in fact, has the worst representation of people with disabilities in its workforce of all states in the country. In 2008, researchers surveyed people with disabilities in California who wanted to work but were not getting jobs. Many uniformly responded that they were told not to work by a health care provider – 97 percent were told by a health care

provider that they shouldn’t work. California’s health care providers might have a different perception of their patients’ employment potential if they worked side by side every day with a colleague who has a disability, but people with disabilities represent only 3.7 percent of the health workforce in California. “So you are seeing right there one of the root causes of disability unemployment in our country,” said Triano. “And sometimes health care providers are correct, and sometimes they are not.” She herself has been denied insurance coverage due to pre-existing conditions. She credits the Affordable Care Act with ending that practice, but admits changing people’s minds about going back to work can be difficult at times – especially when their doctors are discouraging it. “I went out on short-term disability a few years ago (because of my disabilities) and I was out of work for about three months,” she said. “When I was recovered and ready to go back to work, my doctor encouraged me to go on long-term disability. She had only seen me for three months of my life, and she really didn’t know what I was capable of. And in fact I said to her, ‘No, I really have to get back to work – I am being considered for an appointment by the governor.’ She thought I was hallucinating due to the medications I was on.” The California Committee aims to remedy the situation by pressing

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163 Matthew McMeekin gets off a bus at his home in Bethesda, Maryland, on

Feb. 10, 2014, as he returns from work. McMeekin, who is developmentally

disabled, has been employed for 14 years at Rehabilitation Opportunities Inc., a

nonprofit sheltered workshop where he

AP Photo/Charles Dharapak

and other workers with disabilities are

bused each workday to stuff envelopes,

collate files, or shrink-wrap products – all

for far less than the state minimum wage.

for greater employment of people with disabilities in the health care field. The committee believes that having greater representation in this field could be transformative on both sides of the patient-provider relationship. Medical professionals would start seeing people with disabilities as peers rather than patients. The social impact would be equally profound. “If you have a daughter who uses a wheelchair and you take her to go to see the doctor,” said Triano, “if the doctor rolls into the room in a wheelchair, you’ve completely changed that girl’s views and expectations on what she can do in life.” The Committee has set goals for California to improve hiring in the health sector as well as other private and public areas. Right now, only 10 percent of state employees have disabilities, but the California State Personnel Board has issued a mandate to raise that number to 16 percent – to align it with the percentage of Californians living with a disability. Still, the numbers are daunting. To move the employment figures up by .5 percent in a year, the Committee estimates 7,900 people with disabilities would have to enter the California workforce. “I think that what will ultimately move the needle is Medicaid reform,” she said. “In California, there are 2.8 million working-

aged adults with disabilities – 2.2 million are out of the workforce completely. Seventy percent of that 2.2 million have declared to the federal government that they cannot work because of their disabilities and are receiving Social Security disability benefits in order to get the health care they need to survive. Many people with disabilities can work and want to work but choose not to work for fear of losing the longterm services and supports they receive under Medicaid. You shouldn’t have to go on welfare to get health care, but unfortunately that’s the reality for many of us with disabilities in the United States. Medicaid drives state budgets. “Work is so much a part of who we are as a culture in the U.S.,” said Triano. “When you meet someone, the first thing they ask is, ‘What do you do?’ People with disabilities simply want the equal opportunity to be asked, ‘What do you do?’” Ending Sheltered Workplaces While Triano and others want to see greater participation of disabled people in the workforce, one employment practice that almost everyone universally wants to see eliminated is the practice of “sheltered” workplaces. This

is a system whereby people with disabilities are legally hired to work for less than minimum wage. The practice comes from the 1930s, when labor laws were loosened to allow employers to pay workers with disabilities wages commensurate with their productivity. For its time, this was a considerable step out of institutions, where many people with disabilities often were relegated. But Triano summed up the many advocates’ feelings about sheltered work this way: “It is a relic from the past that really needs to go away.” One person who shares this opinion is Andrew Imparato, the executive director of the Association of University Centers on Disabilities (AUCD). Imparato worked on Sen. Tom Harkin’s staff from 1993-94, in the early years of ADA implementation, and again from 2010-2013. He sees that many of the policies have gone from being transformative (in their day) to holding back people with disabilities now. “The biggest federal programs to support disabled people were designed in the 1970s and earlier, when we had much lower expectations for what people with disabilities could do,” Imparato said. Today, his organization, which represents and coordinates

165 Residential buildings on the grounds

of Southside Virginia Training Center in Dinwiddie County, Virginia, are shown

boarded up on May 19, 2014. The center is the first of four institutions closing

under a settlement between Virginia and

the Department of Justice to shift people

with intellectual disabilities to communitybased care. Deinstitutionalization of AP Photo/The Progress-Index, Amir Vera

people living with disabilities has been

an area of focus for disability advocates.

hundreds of university researchers working in cross-disability study and training, is advocating for reform of how the government spends tax dollars to support people with disabilities. He sees that many people in the disability community are being held in poverty by a system designed to offer minimal financial support. Instead, he and his colleagues would like to see a portion of the current federal financial support being put toward job training and employmentoriented long-term services and supports – essentially spending tax dollars with the intention of seeing return on investment by helping people move further toward supporting themselves. “The legislative part of it is going to require action, and it starts with the committees of jurisdiction in the House and Senate deciding that they need to do something,” Imparato said. He sees parallels between this situation and President Bill Clinton’s welfare reform work in the 1990s. Rather than simply receiving support checks, welfare recipients were incentivized to receive new job training so that they could improve their situations. “Lots of people on

SSI [Supplemental Security Income] and SSDI [Social Security Disability Insurance] don’t like rules of the programs and they don’t like the boxes they have been forced into by anachronistic programs.” Imparato recognizes the political risk involved with pressing policymakers to upend the benefits of people with disabilities. “It would be difficult for a Republican president to do this, because it would be too easy to demagogue him or her.” He sees the idea as an opportunity in a Democratic administration, but understands that even then it’s a loaded proposition. “We would need to have disabled people leading the effort,” essentially, “to show that this is something the community wants – that we’re not under political attack.” “We [AUCD] have a lot of our folks who work with public policy out there educating people at [the] state or federal level about how current programs work and [sharing] different ideas on what we have to do to fix the problems,” he added. “Congress could promote change in this area by empowering governors and state legislatures to

test new, more modern approaches to providing long-term services and supports to people with disabilities that are designed to help them maintain full lives in the community with dignity and choice, decent jobs, and economic well-being.” Advocacy for Inclusive Living “How the heck can you be a community when you keep people apart?” Johnson said. “Way back, we would get asked, ‘Why do you want the same access to public transit?’ If I ride the same bus as you, we might realize that we live a few blocks apart. We might even like the same pizza place. Keep us apart, and we might never have a conversation.” Gaining access to public transit systems was a first step. But advocates point out that the disabled rights movement mirrors the civil rights movement AfricanAmericans undertook in the 1960s. First came equal access, next came affirmative action to level the playing field. For many people with disabilities, that even level means being accepted into schools, the workplace, and living in the real world. The AUCD began in the 1960s, under mandate (and a different name) from the Developmental Disabilities Act with the intent of helping more people move out of

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167 institutions and become members of their communities. “In the early years, our mission was to take the best and the brightest from the universities and have them work to help get people with developmental and intellectual disabilities out of institutions – and build communitybased housing and programming for a population that was heavily institutionalized and forgotten about,” said Imparato. “Over time, the focus has gone from getting people out of these situations to promoting quality mainstream education; competitive, integrated employment; and a full life in the community for everyone. It’s a wide range of issues, and the population we’re working with has gotten broader, too.” Today the AUCD works with researchers at more than 100 universities who specialize in developing new ways to partner with and empower people with a wide range of mental, physical, and sensory disabilities and their families so that they have the same kinds of choices and opportunities that so many Americans take for granted. AUCD’s network is using research and evidence to improve classroom instruction, expand employment opportunities, improve training for teachers and health professionals, and promote federal and state policies that further the goals of the ADA and the Developmental Disabilities Assistance and Bill of Rights Act. “Our expectations for what is possible for people with significant to complex disabilities have evolved,” said Imparato, adding that placing people in segregated workshop settings used to be considered a positive step. “Now a lot of our network is trying to get people out of workshops. Segregated places don’t really lead to a good quality

of life or service to the community. So I think we keep raising the bar – getting more people into the middle class.” Moving into the Future With the ADA turning 25, a handful of advocacy groups decided it was time to try even harder in six key areas nationwide: employment, community living, education, transition, healthy living, and early childhood. The campaign, known as Six by ’15, aims to achieve improvements by the end of next year. To learn more about the campaign and/ or endorse the goals, please visit www.sixbyfifteen.org. For instance, in the area of transition, the project aims to see at least six states commit to supporting successful and outcome-based programs and strategies for high school transition services, creating better opportunities for high school graduates to enter the workforce. And for community living, the program wants at least six states to implement the Community First Choice Option. So far, more than 140 different research and advocacy organizations have agreed to endorse the Six by ’15 initiative. The list of supporters is especially impressive since, as Johnson admits, the disability community often tends to work in siloed environments – cutting themselves off from their peers who might be focusing in similar areas. Their inclusion is bringing renewed momentum and discourse at all levels of state and national government. By working together on some common goals, these groups are achieving what may well define the next 25 years of activism in post-ADA America: cross-disability collaboration, coordination, and full integration. n

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RESOURCES GENERAL

advocacy

DISABILITY.GOV www.disability.gov/

LIST OF NATIONAL DISABILITY RIGHTS NETWORK MEMBER AGENCIES www.ndrn.org/en/ndrn-member-agencies.html

Disability.gov is the federal government website for comprehensive information on disability programs and services nationwide. AGING AND DISABILITY RESOURCE CENTER TECHNICAL ASSISTANCE EXCHANGE www.adrc-tae.acl.gov/tiki-index. php?page=HomePage Aging and Disability Resource Centers (ADRCs) serve as single points of entry into the long-term supports and services system for older adults and people with disabilities. INDEPENDENT LIVING RESEARCH UTILIZATION DIRECTORY OF CENTERS FOR INDEPENDENT LIVING (CILs) AND ASSOCIATIONS www.ilru.org/projects/cil-net/cil-center-andassociation-directory Independent living centers are consumer-controlled, community-based, cross-disability, nonresidential private nonprofit agencies designed and operated by individuals with disabilities that provide an array of independent living services. U.S. Business Leadership Network® http://www.usbln.org The USBLN® mission is to help business drive performance by leveraging disability inclusion in the workplace, supply chain, and marketplace. INFORMATION AND TECHNICAL ASSISTANCE ON THE AMERICANS WITH DISABILITIES ACT www.ada.gov

National Disability Rights Network (NDRN) is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP). Collectively, the P&A/CAP network is the largest provider of legally based advocacy services to people with disabilities in the United States. THE ADA NATIONAL NETWORK adata.org/ The ADA (Americans with Disabilities Act) National Network consists of 10 regional centers and an ADA Knowledge Translation Center. The regional centers provide local assistance and foster implementation of the ADA. THE NATIONAL DISABILITY LEADERSHIP ALLIANCE www.disabilityleadership.org/ National Disability Leadership Alliance (NDLA) is a national cross-disability coalition that represents the authentic voice of people with disabilities. NDLA is led by 14 national organizations run by people with disabilities with identifiable grassroots constituencies around the country. Consortium for Citizens with Disabilities c-c-d.org The Consortium for Citizens with Disabilities (CCD) is a coalition of approximately 100 national disability organizations working together to advocate for national public policy that ensures the self determination, independence, empowerment, integration, and inclusion of children and adults with disabilities in all aspects of society.

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First compact catheter with attached bag

Setting the standard for quality catheters SpeediCath was the first to give you an instantly ready-to-use catheter, the first to give you a compact catheter for women, and the first to give you an all-in-one compact catheter and bag solution. SpeediCath catheters are available in the same reimbursement category as your current uncoated catheter.Â So ask for SpeediCath by name today. Order free samples by calling 1-866-226-6362 or visit speedicath.us

Important Safety Information SpeediCath catheters are indicated for use by patients with chronic urine retention and patients with a post void residual volume (PVR) due to neurogenic and non-neurogenic voiding dysfunction. The catheter is inserted into the urethra to reach the bladder allowing urine to drain. Each SpeediCath Compact Set device is intended for males or females only. SpeediCath catheters are available by prescription only. Patients performing self-catheterization should follow the advice of, and direct questions about use of the product to, their medical professional. Before using the device, carefully read the product labels and information accompanying the device including the instructions for use which contain additional safety information. The SpeediCath catheter is for single use only; discard it after use. If you experience symptoms of a urinary tract infection, or are unable to pass the catheter into the bladder, contact your healthcare professional. For further questions, call Coloplast Corp. at 1-866-226-6362 and/or consult the company website at www.coloplast.us.

Equal Access, Equal Opportunity: 25th Anniversary of the Americans with Disabilities Act

Articles inside

The ADA Legacy Tour

A Timeline of the Passage of the Americans with Disabilities Act

The Capitol Crawl

The Built Environment: Beyond the ADA

Access to Public Transportation

The ADA: Helping Students from Elementary School to College

Communications For All

Technology for People with Disabilities Yesterday, Today, and Tomorrow

Reinforcing Federal Intent: The ADA Amendments Act of 2008

Wounded Warriors

A Level Playing Field

Disability in the Social Context

Next Steps: 25 Years After the Passage of the ADA, The Work of Disability Rights Activists Continues

A History of the ADA