ABILITY Magazine - Robert Patrick by ABILITY Magazine

ROBERT PATRICK

OCT/NOV

THE VOICE OF OVER 50 MILLION AMERICANS

OCT/NOV VOLUME 2008

$4.99 Volume 2008 ROBERT PATRICK

MAGAZINE

ABILITY

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M ANAGING E DITOR Pamela K. Johnson

M ANAGING H EALTH E DITOR E. Thomas Chappell, MD

H EALTH E DITORS

Gillian Friedman, MD Larry Goldstein, MD Natalia Ryndin, MD

C ONTRIBUTING S ENATOR U.S. Sen. Tom Harkin (D-IA)

E DITORS

HUMOR — Run for Office? Run the Other Way!

GREEN PAGES — Water by Computer, Solar Flashlight

DRLC — Make Polling Places Accessible For All

BEST PRACTICES — HP & Boeing

ANITA KAISER — Finding Innovative Ways to Mother

KENNEDY LEGACY — One Family, Many Contributions

ANTHONY KENNEDY SHRIVER — Best Buddies

WILLIAM KENNEDY SMITH, MD — iCons

ASST. SECRETARY OF LABOR — ‘Everybody Needs to Work’

MEREDITH EATON — From Therapist to Actress

JR MARTINEZ — Soldiering On

MANAGING PAIN — Ear Aches, Tooth Aches

CROSSWORD PUZZLE — Guess Your Best

GEORGE COVINGTON — The Secret of Politics

EVENTS & CONFERENCES

SUBSCRIBE TO ABILITY MAGAZINE

C ONTRIBUTING W RITERS

Best Buddies p. 31

Paralympic Games Beijing

Extremity Games

HEADLINES — Voting Gains; Help with Medicare

Linda Boone Hunt Gale Kamen, PhD Valerie Karr Laurance Johnston, PhD Andrea Kardonsky Deborah Max Myles Mellor - Crossword Puzzle Paula Pearlman, JD Richard Pimentel Allen Rucker Kristen McCarthy Thomas Betsy Valnes

H UMOR W RITERS Mr. and Mrs. Kaiser p. 24

George Covington, JD Jeff Charlebois Gene Feldman, JD

W EB E DITOR Joy Cortes

G RAPHIC A RT / I LLUSTRATION Music Within

Scott Johnson Paul Kim Melissa Murphy - Medical Illustration William K. Smith, MD p. 18

P HOTOGRAPHY

Brian Gordon /Meredith Eaton CBS

T RANSCRIPTIONIST Sandy Adler ABILITY’s Crossword Puzzle

Oakley’s headquarters:The finish line for OC Habitat’s Homes for Heros benefit

Dahvi Fischer Renne Gardner Sonnie Gutierrez Eve Hill, JD Glenn Lockhart Josh Pate Denise Riccobon, RN Maya Sabatello, PhD, JD Romney Snyder Jane Wollman Rusoff

DIRECTOR OF BUSINESS AFFAIRS John Noble, JD

MARKETING/PROMOTIONS Jo-Anne Birdwell Jacqueline Migell Andrew Spielberg JR Martinez p. 57

PUBLIC RELATIONS JSPR

NEWSSTAND CIRCULATION John Cappello

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ABILITY Magazine is published bimonthly by C.R. Cooper, 8941 Atlanta Ave. HB, CA 92646 (ISSN 1062-5321) All Rights Reserved. Subscriptions: $29.70 per 1 year (6 issues). Periodicals postage rates at Irvine, CA and at additional mailing offices. POSTMASTER: Send address changes to ABILITY Magazine, Attention Subscriptions Manager, PO Box 10878, Costa Mesa, CA 92627; Volume 2008 Robert Patrick Oct/Nov Printed in U.S.A.

Editorial@ABILITYmagazine.com

CORPORATE SHIPPING

NON-PROFITS Boeing p. 42

ABILITY Awareness/Fuller Center Habitat for Humanity

PUBLISHER

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ILG IS A-OKAY

uman resource execs, Fortune 500 company reps and small business leaders all put their heads together at a recent summit to discuss strategies to make the workplace work for everyone. The event, which marked the 26th Annual Industry Liaison Group National Conference, featured nationally recognized speakers such as PBS Television host Tavis Smiley, Academy Award winner Marlee Matlin and popular blogger Luke Visconti. Smiley spoke about race, expressing concern that, should there be an Obama presidency, the issue would not marginalized because he is the first Black president and a barrier had been broken. Matlin discussed her issues with Hollywood as a deaf actress and how she overcame obstacles. And Visconti, partner and cofounder of DiversityInc magazine, who writes the popular blog, Ask the White Guy, talked about the diversity questions readers send him, because they’re too intimidated to ask the folks at work. Key federal officials also attended the conference and presented relevant policy updates. For instance, Patricia Schaeffer, vice president of Regulatory Affairs in the Department of Labor’s Office of Federal Contract Compliance Programs, announced two new Federal policy initiatives: First, the Good-Faith Initiative for Veterans Employment (G-FIVE), which recognizes companies’ best practices for the employment and advancement of veterans. And second, the Federal Contractor’s Online Application Selection System, which requires contractors and subcontractors either to make electronic job application systems accessible to candidates with disabilities, or to provide them with a reasonable accommodation that allows everyone an equal opportunity to compete for a job. Author Grace Odums, author of Diversity Principles: Strategic Integration, offered research, which shows that companies that employ diversity as a business strategy, realize higher productivity, operational efficiencies, and overall profitability. Her findings were in keeping with what a panel of senior executives from industry and government have found to be true as well. The group included president and COO, Wes Bush of Northrop Grumman Corporation, Joyce Rowland, senior vice president of human resources at Sempra Energy; Sherry

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Nolan, vice president of diversity and workplace development at Pepsi Bottling Group; and Deborah Soon, vice president of marketing and executive leadership initiatives at Catalyst. “The benefit [of diversity] to our companies is several fold,” explains Jacqui Quesada Jones, chairperson of the conference organizing committee, and the newly hired diversity staffing manager for Northrop Grumman’s Irvine, TX, plant. During conferences such as this one, “We get real time updates from the agencies on regulations, trends they’re noticing across the country, as well as the opportunity to share best practices...” smilg.org/2008/ILG-Conference2008ExecutiveSummary.doc

HELP FOR HIRING VETS

new online resource helps employers respond to the needs of veterans with traumatic brain injury (TBI) and post-traumatic stress disorder (PTSD), two common conditions facing returning soldiers. The America’s Heroes at Work website (see below) provides information about TBI and PTSD, and offers guidance on how to implement workplace accommodations and other services to help those who have it. The website includes the Job Accommodation Network’s tollfree phone number, which employers can call to receive personal assistance with providing job accommodations for veterans with disabilities. “One of the best ways we can help these courageous men and women and honor their sacrifice is to help them return to full, productive lives through work,” said Secretary of Labor Elaine L. Chao. “Employment can also play a role in their recovery.” Although their injuries may not be obvious, people with TBI or PTSD may face difficulties, especially in the area of employment. Reasonable workplace supports can often help resolve these issues. Through America’s Heroes at Work, employers learn how to offer job coaching and mentoring, which can create a positive, successful workplace experience for disabled veterans and non-veteran employees, including such “first responders” as fire fighters, EMTs and police officers, who routinely experience traumatic events. americasheroesatwork.gov

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THE SCENT OF CANCER

of new methods to analyze skin for signs of altered health status.

dors emanating from the skin can be used to identify basal cell carcinoma, the most common form of skin cancer, according to research out of the Monell Chemical Senses Center in Philadelphia. The findings, presented recently at an American Chemical Society conference, may lead to even more methods to detect various forms of skin cancer.

Increased understanding of the chemicals related to skin odor could also lead to development of more effective anti-aging skin care products.

The researchers “sniffed” air above basal cell tumors and found a different profile of chemical compounds, compared to skin located at the same sites in healthy control subjects. “Our findings may someday allow doctors to screen for and diagnose skin cancers at very early stages,” said Michelle Gallagher, PhD. It turns out that skin produces airborne chemical molecules known as volatile organic compounds, or VOCs, many of which have a scent. In the study presented at the conference, the researchers took VOC profiles from basal cell carcinoma sites in 11 patients and compared them to profiles from similar skin sites in 11 healthy persons. Both profiles contained the same array of chemicals; the difference involved the amounts. Some chemical quanitities increased and others decreased in samples from basal cell carcinoma sites. To identify changes that were the tell-tale signs of cancer, researchers identified a normative profile for VOCs, which varied based on age, gender and area of the body being examined. In research published online recently in the British Journal of Dermatology, Gallagher and his colleagues sampled air above two skin sites – forearm and upper back – in 25 healthy male and female subjects. They ranged in age from 19 to 79. The researchers identified nearly 100 different chemical compounds coming from skin. A normal skin profile varied between the two body sites, with differences in both the types and concentrations of VOCs. Aging did not influence the types of VOCs found in these profiles; however, certain chemicals were present in greater amounts in older subjects. Implications of the research are considered to be vast. Together, the two studies may help advance development 8

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monell.org

SEE AND SAY

breakthrough in video transmission technology will soon allow deaf and hard-of-hearing Americans to sign via their cell phones. Using special software, University of Washington engineers have found a way for mobile devices to send video. As a result of their discovery, the UW engineering team has been awarded a National Science Foundation grant for a 20-person field project to perfect the system; the project will begin next year in Seattle. The current version of what’s being called MobileASL uses a standard video compression tool to stay within the data transmission limit. Future versions will incorporate custom tools to obtain better quality. The breakthrough technology allows a cell phone user to to transmit a person’s face and hands in high resolution, while the background remains in low resolution. Now the team is working on another feature that can identify instances when people are moving their hands; such a feature would reduce battery consumption and processing power during times when the person is not signing. The team currently uses phones imported from Europe. These imported phones are currently the only ones compatible with the software that feature a camera and a video screen located on the same side to allow people to tape themselves while watching the screen. According to Eve Riskin, UW professor of electrical engineering, mobile video sign language won’t be widely available until the service is provided through a commercial cell-phone manufacturer. The team has been in discussions with a major cellular network provider that has expressed interest in the project. A YouTube video of the prototype posted by the UW team has gone viral among deaf people around the country. “A lot of people are excited about this,” said Riskin. youtube.com/watch?v=FaE1PvJwI8E

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always thought ultimate fighting was a brutal sport, until I started following politics. At least the fighters shake hands after they beat the hell out of each other. Why anyone would want to run for public office is beyond me. The scrutiny is relentless. One thing that would disqualify me is, well, my past. The press would pick through it like a mother chimp grooming bugs out of her babyâ&#x20AC;&#x2122;s fur. They would find my history of 10

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shoplifting, gambling and spousal abuse. (That time my wife kicked me to the curb.) Then there were those nights with ladies of the evening. I’m sure that wouldn’t help my campaign. For some reason, soccer moms tend to frown on revelations of debauched sex and Jell-O shooters slurped off a partner’s tummy. With every politician, there’s always going to be some sort of sex scandal. Nothing is off limits, prostitutes, teenage boys, it’s all fair game. If a politician isn’t cheating you, he’s probably cheating on his spouse, but he’s most likely doing a little of both. That’s how he spreads the wealth. But, a good sex scandal means publicity… and unlike the woman he’s with, the publicity is free. I’m sure that the moment I declared my intention to run for office though, piles of bones would pour from my closet like a rush of polluted water breaking through a New Orleans levee during in a hurricane. Most of the time, a candidates downfall is the result of some seedy sex scandal. On the upside, if they would just look at my current state; they’d see that I’ve changed. I’m married, which means I have no sex life anymore. Why do people choose public office? The desire to make a difference? To change the world? To help the little man? No, the truth is more primitive. Through years of watching the news and reading the newspaper, I’ve deduced an Einstein-like mathematical formula to help understand the hunger to be a government official: Politician equals power and greed squared. The politician is known as a public servant, which is obviously a misnomer. The day a Congressman comes to my house and weeds my flower bed, walks my dog, runs the kids to dance class, gets me a beer, feeds me grapes, and throws in a back massage, then I’ll call him a “servant.” (Don’t get any ideas Barney Frank.) In fact, these people are far from servants; they are rich beggars. The majority of their time isn’t spent on solving national problems like illegal immigration, health care, social security, alternative energy or, most importantly, getting the talentless Paris Hilton out of the limelight. No, their time is spent hobnobbing around the country on first class flights, staying in five star hotels, drinking top shelf booze and spending nights with high class hookers. Instead of fixing the trade deficit, they’re sticking their corrupt-stained hands out and snatching campaign funds so they can win another term in office. Blue blood homeless bums living in great big homes… with servants. They know that without that money, they’re back to eating ribs at Chili’s and being told their hour is up by some crackinfested, street walker. Yes, much time is spent on campaign financing, which might be best because it keeps them from convening and passing laws that slowly erode what minuscule

rights we have left. Our government officials pick at our freedoms like a little girl at a state fair pulling chunks off her fluffy wad of cotton candy. I say keep legislation out of it: if you want people to lose their rights and freedoms, tell them to get married. But I digress. Where was I? Oh right, politicians groveling for bucks. I say take the money out of politics and put it in my 401K. Money is certainly important to get into office. Let’s face it, you need cash to bash. The more dollars you have, the sleazier you can make your opposition look. If your opponent did cocaine when he was in college and you have a small budget you might only be able to take out a negative ad in a small town paper. On the other hand, if you’ve been able to rake in some major dough from supporters, you can run 60 second TV commercials all over the country. While superimposing the head of your powdered nose paranoid opponent fumbling with a big word as an announcer with a deep, snarling voice chimes: “You want this man hoofing big fat rails in the oval office while Kim Jung Ill points a missile at your city? Can we really trust a frat boy junky who so strung out he can’t even pronounce the word Hezbollah? This message approved by Everybody who’s a Democrat.” Could you imagine having to give speeches every day? Not me. Whenever I had to give an oral report in junior high school, I was throwing the night before, and then spent the next morning trying to convince my mother I couldn’t go to school because I had Polio and Scarlett Fever. It never worked, and I had no choice but to give my presentation as a dark, wet spot grew in the crotch of my pants in front of a giggling class. I think my main hang-up would be taking a stance on a particular issue. The problem is I want everyone to like me. If people were protesting something I supported, I would switch positions right then and there. I can’t stand to be hated. I hate it. I would try and flip-flop so much that nobody knew what I stood for. “I say raise taxes while we’re lowering them,” or “I’m for gay marriage as long as the couple is straight.” Something must be wrong with someone who wants to live their life under a microscope. What are you an amoeba? No matter what you do, half the people think it’s right and the other half think it’s wrong and only half of those people vote. Politics. What a filthy way to spend your life. Absolute power corrupts absolutely. The Romans will attest to that. Orgies were their downfall. (But what a way to go!) Thank you folks. You’ve been a great audience. Don’t forget to tip your waitresses and congressman. “Ham on a Roll”

by Jeff Charlebois

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s the new Green Guy, I thought it’d be interesting to start off with a review of some typically guy technologies and activities that have an eco-friendly edge.

AN OUTHOUSE THAT’S IN Falcon Waterfree Technologies, as the name implies, does its business without H2O. In fact, the company estimates that each of its products saves an average of 40,000 gallons of fresh water per year. If you happened to make it to the 2008 Summer Olympics in Beijing, you may have had the pleasure of using the product. What’s the product, you ask? I’m talking water-free urinals. Now, if you’re like my wife, you may have let out a disgusted ewww! But consider this: As much as five percent of all fresh water is used to flush away urine. With these new-fangled urinals, however, water does not need to be transported to the unit nor away from it. In addition, no energy is expended on the back end to treat water. Not only do water-free urinals contribute to our environmental well-being, but they also save money. For starters, they save 100 percent of the water that would be going through the urinals, and therefore, 100 percent of water and sewer charges. Moreover, there’s little maintenance, as there are no moving parts. Because no hard water runs through them, drain lines remain free of calcification. The only maintenance involves changing the cartridge three to four times a year. This technology is not only water-free, but also odor- and trouble-free, in terms of operation. The urinal consists of a vitreous china or stainless steel fixture and a cartridge that fits into a drainpipe at the bottom of the urinal. This unique sustainable product was not only a showcase water conservation technology at the Beijing Olympics, but it also helped a city of 18 million people accommodate the additional needs of Olympic visitors and athletes. Based on average annual water savings of 40,000 gallons per urinal, the 165 water-free urinals in Beijing will save 6.6 million gallons of water per year. I guess we shouldn’t expect anything less from the urinal of Olympic champions. falconwaterfree.com

WATER YOUR LAWN BY COMPUTER Cyber-rain isn’t something out of a futuristic novel. It’s here today, and gives homeowners, property managers, building owners and landscape contractors an easy way to save 30 percent to 70 percent on their landscape watering bills with the use of a personal computer. Los Angeles-based Cyber-Rain develops these smart irrigation systems for home and business. “From day one, our goal has been to build products that will help people use technology to save money and protect the earth,” says Judy Guido, chief marketing officer for the company. “Watering creates a major drain on our natural resources, and smart irrigation can play a major role in saving water.” By using personal computers to wirelessly control sprinkler systems, CyberRain enables users to program their watering schedules, set reminders about when to fertilize, and even measure water savings through an easy-to-use intuitive interface.

The Metropolitan Water District of Southern California even offers local residents rebates for water saving devices installed at their homes, including the CyberRain smart wireless irrigation controller. Not in Southern California? Check with your local water district to see what rebates they offer for this kind of device. The Cyber-Rain system costs about $350, and is estimated to pay for itself within a few months. Ka-ching!

Using super-bright lifetime LED bulbs, the solar flashlight generates the greatest amount of light with the least amount of environmental impact. Bulbs are rated at 11 continuous years of burn time or 22 years of burn time when turned on only at night. The flashlight comes fully charged and holds its charge for more than three years. It’s convenient and pays for itself by eliminating the need to replace expensive batteries and bulbs. So go forth into that dark night!

cyberrain.com

LET THERE BE (BATTERY-FREE) LIGHT

by Renne Gardner hybridlite.com

More than one billion batteries are disposed of every year in the United States! As an owner of a dozen flashlights for garage work, night hiking and camping, I’ve certainly contributed my share of these toxics tubes to the waste stream. Sure, nickel-cadmium rechargeable batteries help reduce the amount of used battery disposal, but eventually even they wear out. With the solar flashlight, there are no more worries about disposing used batteries. This hybrid product actually taps sunlight and indoor lighting to recharge itself. Properly juiced, the Hybrid Solar Light works day or night. The unit even contains a back-up battery, which kicks in if the solar capacitor’s charge has run down. That ensures that there’ll be light when you need it. ABILITY 13

LET’S VOTE…

BY ANY MEANS NECESSARY!

any of us may feel as if we’ve been perpetually in the midst of a presidential campaign for quite some time. In reality, we are just now gearing up for the heart of election season. As we head into this heated contest, it is a good time to reflect on the status of voters with disabilities in this country.

In the 2000 election, people with disabilities were, on average, about 12 percent less likely than those without disabilities to vote. Although this was a significant difference compared to the population of people without disabilities, it was an improvement from previous years. In the 1998 elections, people with disabilities were about 20 percent less likely than people without disabilities to vote, according to “Voter Turnout, Voting Difficulties and Disability in the 2000 Elections: Laying a Challenge at Democracy's Door,” by Lisa Schur, PhD, and her colleagues at Rutgers University and the University of Arkansas. While representing an improvement over previous years, the lower voting rates of people with disabilities in the 2000 election, represents a significant number of voters left out of the political process. According to Dr. Schur's report, if people with disabilities voted at the same rate as those without disabilities in 2000, there would have been approximately 3.2 million additional voters, which would have raised the overall turnout rate by 1.7 percent, and perhaps influenced the outcome of certain election contests.

A FEW VOTES DECIDED ELECTION In the controversial 2000 Florida election, for instance, George W. Bush beat Al Gore in the official tally by only .009 percent. Similarly, “[f]lip fewer than 60,000 votes in Ohio, and John Kerry is President in 2004. Nixon would have won in 1960 with 5,000 shifted votes in each of Illinois and South Carolina, and 12,000 in New Jersey,” according to ABC commentator George Stephanopoulos in his article, "How To Be A Better Voter," which appeared in a recent issue of Parade Magazine. In other words, every vote makes a difference. Given the number of people with disabilities in this country and how close recent elections have been, this voting block has the potential to sway an election. However, people with disabilities continue to face myriad obstacles. According to a 2004 National Organization on Disability/Harris Poll Survey, 21 percent of American adults with disabilities— representing more than eight million potential voters—say that they have been unable to vote in a presidential or congressional election due to barriers faced either at or getting to the polls. These statistics are not consistent across all states. For example, in Georgia, Arizona and California, only about one-third of those with disabilities who could vote actually did so in the 2000 election. While Maine, Minnesota and New Hampshire saw much stronger turnouts of voting-aged people with disabilities, averaging above 50 percent, according to a report called the “State Census Disability Numbers and Voting Turnout.” Among those who do vote, people with disabilities are more likely than those without disabilities to use non-traditional methods. People with disabilities are almost twice as likely as other citizens to vote by absentee ballot. Among those in this group who voted, 20 percent used an absentee ballot, compared to 11 percent of people without disabilities.

COMMON PROBLEMS AT THE BOOTH One of the most frequent barriers for people with physical disabilities is inaccessible polling places. As of 2001 the Government Accountability Office found that 84 percent of polling places limit access to people with disabilities. For example, there may be stairs at the entrance to a polling place. Many times a polling place does not have accessible, clearly-marked paths from the parking area to the accessible entrance, which allows voters with disabilities to enter and exit safely and independently. Physical accessibility often poses a problem because polling places can be 14

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in many different types of settings, including some that are not typically open to the public or open only to limited audiences, e.g., church basements, meeting halls or a neighbor’s garage. In other situations, voters with disabilities may be denied accommodations, given inadequate ones or encounter poll workers who are unfamiliar with how to provide them. Election workers may be unprepared, for instance, to provide chairs for voters with disabilities who must wait in a long line. Many people with disabilities have faced inaccessible voting equipment or procedures. Common voting machines include those with punch-card ballots, levers or paper ballots that create barriers for persons who cannot press buttons, use a marking pen or levers. Voters who are blind or have vision disabilities and cannot read the text in these machines are essentially prevented from voting independently. Finally, the set up of voting machines and booths can make them inaccessible to those in wheelchairs. Similarly, written instructions may not be provided in alternative formats, such as large print, Braille or audio. Information that is provided orally, e.g., instructions about where to go, may not be available in a written format. All of these barriers provide a disincentive for people with disabilities to vote at the polls, and frequently can discourage a person with a disability from voting at all.

LEGAL PROTECTIONS In 2002, Congress passed the Help America Vote Act, which is commonly referred to as HAVA. Largely in response to the challenges posed by the 2000 election, HAVA affects every part of the federal voting process, including voting machine regulations, provisional ballots, voter registration and complaint procedures. Election officials and legislators in each state are responsible for implementing HAVA. Among the requirements of HAVA are a number of specific mandates designed to increase access for voters with disabilities. Most significantly, HAVA provides an explicit right to participate in elections, and to cast a private and independent ballot. As part of this mandate, HAVA requires states to ensure that their voting systems are accessible to people with disabilities. Specifically, “[t]he voting system shall . . . be accessible for individuals with disabilities, including non-visual accessibility for the blind and visually impaired, in a manner that provides the same opportunity for access and participation (including privacy and independence) as for other voters.” HAVA also requires that voting machines must be accessible to people with disabilities. Each polling place must have “at least one direct recording electronic voting system, or other voting system equipped for individuals with disabilities.” This provision has been among the more difficult to implement, given the controversy over electronic voting. For example, some voting advocates, including many government officials, want to require touch-screen voting machines to be able to produce voter verified paper audit trails, or a printed record of each person’s vote. These advocates say the electronic machines are vulnerable to error, and that a paper audit trail will address mistakes or fraud that would otherwise be difficult to fix. However, many disability advocates believe that this requirement has ABILITY 15

slowed the implementation of touch-screen voting, which is often the only way certain individuals can vote via secret ballot. Voting machines with touch screens and optional audio via headphones address inaccessible voting by allowing people who are blind or have limited use of their hands to vote by themselves. Otherwise, voters with such disabilities must be accompanied by someone who can provide assistance or read the ballot to them. HAVA also addresses the right of people with disabilities to vote by providing federal funds to make the path of travel, entrances, exits and voting areas of each polling facility accessible to individuals with disabilities. The Department of Justice has developed a checklist that is a start-to-finish guide to creating accessible polling places. The voting legislation also mandates that states provide information about the location of accessible polling places to people with disabilities. It requires that election officials, poll workers, and election volunteers receive training on how to best promote the access and participation of individuals with disabilities. HAVA contains two enforcement mechanisms: First, the Attorney General may bring an action against a state regarding inadequacies in its voting system, provisional voting, voting information requirements and computerized statewide registration list requirements. Voters who have encountered a violation of HAVA can request that the U.S. Department of Justice seek compliance against the state through the court system. The department has begun to take action against non-compliant states. For example, a federal court recently ordered the state of New York to provide voting systems that are accessible to voters with disabilities at each poll site by September 2008, and to replace lever voting machines by September 2009. Second, states must establish complaint procedures allowing people to file written complaints and request hearings to remedy violations that involve election technology and administration. Within 90 days of a complaint being filed, a state must determine whether or not there has been a violation. To ensure that relevant government officials are on notice of voting problems, people with disabilities should use both means to register complaints under HAVA. In addition to HAVA, the more general disability rights laws, such as the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, continue to apply to voting and voting related programs. These statutes require public entities to ensure that their programs, services and activities are accessible to people with disabilities. This would include activities related to voting, although there is no explicit requirement to provide independent and secret voting. Nevertheless, under these laws, state and local governments must ensure that 16

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programs are physically accessible, provide reasonable accommodations and offer materials in alternate formats, among other requirements. In addition to applying to voting laws, these rights also govern town hall meetings and debates.

STAYING ENGAGED IN THE PROCESS People with disabilities should start thinking about access to the polls long before any election. To ensure states and elected representatives remain committed to enforcing voting rights laws, itâ&#x20AC;&#x2122;s important for the disability community to be proactive and engaged. For example, under HAVA states must develop a plan for implementing voter accessibility requirements, which includes an explanation of how it will adopt voting system guidelines and processes. People with disabilities and disability advocacy organizations should be informed about their stateâ&#x20AC;&#x2122;s plan so that they can determine where additional improvements may be needed. Anyone who experiences problems on election day should call 1-866-OUR-VOTE (1-866-687-8683). Legal volunteers with the National Campaign for Fair Elections will be staffing phones to provide any needed advice about your voting rights. Given the discrepancy in voting turnout for people with disabilities, it is clear that there is still much work to do. However, armed with information and legal resources, we can ensure that the right to vote is a promise fulfilled for every American. by Shawna L. Parks and Paula Pearlman Shawna L. Parks is the Director of the Civil Rights Litigation Project, and Paula Pearlman is the Executive Director of the Disability Rights Legal Center. disabilityrightslegalcenter.org nod.org newstandardnews.net ada.gov/votingck.htm

The Mission of the Disability Rights Legal Center, formerly the Western Law Center for Disability Rights, is to promote the rights of people with disabilities and the public interest in and awareness of those rights by providing legal and related services. We are located on the campus of Loyola Law School in Downtown Los Angeles and work with Loyola Law students in all of our programs.

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like, “Whew!” That showed us an area we need to work on, because it’s not just the person with cerebral palsy; it could be an elderly person with arthritis, or anybody with a dexterity problem, or someone who’s busy with their other hand. The reality is that any one of us could become disabled at any time. Everything becomes more of a challenge as we get older and our bodies run down.

EARNING THEIR WINGS

f you’re blind, you shouldn’t have to touch everything in an airplane bathroom to locate the flush handle on the toilet. If you have mobility issues, it shouldn’t take you half the flight to buckle your seatbelt. Boeing, which builds and sells planes to all the major commercial airlines, has implemented a variety of design measures to ensure that passengers with disabilities or special needs have a pleasant flight. ABILITY Magazine recently spoke with Boeing staff members, Vicki Curtis, Millie Brown and Geoff Potter about these design and accommodation initiatives for airline passengers with disabilities. Vicki Curtis is a senior engineer who works on accessibility design. Millie Brown focuses on reasonable accommodations and Geoff Potter works on employee communications for the company. AM: Who would like to start? Curtis: I guess we could start with me. I work in The Concept Center. We primarily do research and product development. We’ve been focusing on a number of projects, trying to make the airplane have as few boundaries as possible, which is quite a challenge. It is a real confined space, and you can only do so much. But there are simple changes that you can make. To gain more insight we hired an ethnography company to do flyalongs with passengers who have disabilities. Ethnographers study people in a situation. For us, they videotaped people getting on and off airplanes, and also during flight. It was eye-opening. We watched a gentleman with mild cerebral palsy, a blind person, a person who was partially deaf, and a couple of people who had polio. So it gave us a variety of insights. If you ask any of these people if they have issues flying, they’d say, “no, no, no.” Other people might, but not us. Yet on the video, we saw them encounter a number of difficulties. We watched the gentleman who had cerebral palsy spend, I don’t know, maybe 30 seconds with his seat belt, which should have been a five-second thing. We watched him struggle, and when he got through, he was

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If you’ve ever watched a single mom with a toddler get on an airplane, it’s like she essentially has no hands. She’s got the toddler, and a stroller she has to stow. Maybe she’s carrying a diaper bag and her carry-on and a car seat and trying to herd the kid down the aisle. My hat’s off to that lady. AM: And the toddler’s no help. Curtis: Yeah. If you have to buckle in a squirming child, it gets worse. So everything that we implement to address disabilities makes it better for everyone else as well. AM: When people think about accessibility on a plane, the obvious thing is a wheelchair. Curtis: We did a workshop this spring where we invited four airlines, some seat manufacturers, and the Open Doors organization to the Disney Institute. Our focus was to get on and off an airplane with a wheelchair. People say, “Disney? Why Disney?” Well, getting on and off airplanes can be real similar to getting on and off a ride. And when we went out to Disney World— this was one of my better business trips—we studied how they accommodate a person in a wheelchair without stopping the whole ride. For instance, they give the person in the wheelchair the option to stop the ride if needed, or they can transfer the person into a car and then add that car to the ride, so there are a variety of options to accommodate people without unduly delaying the ride for everyone else. They do a variety of things, and we thought, “Wow, maybe we could incorporate some of those on an airplane.” We came up with several ideas that we could work on. Some of the seat suppliers went back to their home companies, and I’m hoping they’re working on something that’s going to make a difference. AM: Sounds like follow up will be important. Curtis: Yes. Regarding motorized wheelchairs, another thing we did is invite Bombardier out. As you know, wheelchairs weigh up to 400 pounds, and are difficult to get into the cargo area of a plane. So we had four airlines and probably six wheelchair manufacturers, and we built a mock-up of the cargo door for a 737 and for a CRJ plane. We invited everybody out and brought in a 400-pound wheelchair, and said, “OK, get it in that little hole there.” The airlines discussed their issues with it. It’s not likely we can change thousands of 737s. We

understand that it wasn’t a good accessible design in the first place. However, the wheelchair manufacturers were all over the challenge: “Wow! OK, if a person in a motorized chair is going to travel,” they said, “this is a real challenge.” There are a number of things that manufacturers can do to make the chair fold up or get a little smaller, so it can be stowed without being damaged. Some of the airlines worked together to brainstorm the safest way to get it in there. We asked questions like: Can you tilt it over? Are there different tools that we could use to help get a chair in there, and then upright it so that people arrive with their chair intact and not damaged? It was real eye-opening for everybody involved. The 737 was developed before the Air Carrier Access Act. I don’t even think that legislation outlines requirements, but obviously everybody likes to get to their journey in one piece. If you’ve got a wheelchair that’s damaged when you arrive at your destination and now you don’t have your wheelchair, it ruins your whole trip. Most airlines understand that it’s not the money involved, it’s the experience the person has with your airline. You know, we also did a study on aging. We worked with the Ford Motor Company to obtain copies of their Third Age Suit. I’m not sure if you’re familiar with that. It’s a coverall that you put on and it restricts all major joints, like your neck, your elbows, your knees, your back. Some of our younger engineers put them on and then flew in them—via Alaska Airlines—from Seattle to Spokane, which is about a 55-minute flight. They had a little list of things to do. The list was in six-point font. The dark gray letters were printed on a medium gray background, so it had no contrast. We gave them heavy-weighted carry-ons to simulate the lack of strength or reduced strength. They wore weight-lifting gloves, so they had little dexterity. All the younger engineers said, “Getting old really sucks!” (laughs) They had to turn on the overhead light, adjust the air. Engineers thought the tiny switches were discreet and a really good idea, until they couldn’t see them or reach them. They thought, “That design really stinks, maybe we should be doing something different.” When they got to their destination, those engineers shed those suits as quick as they could. You know they were thinking, “I want to go back to my young body!”

experience. After the first day, some people thought, “This is really good, we can do this.” By the second day, however, the entire team was crabby and tired. We even went out to lunch at an Italian restaurant, and the guy who wore the big heavy leather gloves said, “What I ordered depended on my capabilities. Now I’m limiting my choices.” Pasta was not going to work for him. Potter: Beyond the team that Vicki works with, Boeing’s got a number of events to help spread that kind of awareness to people who don’t have disabilities. We held a sign language class in Philadelphia. We had a number of able-bodied managers play wheelchair basketball in California. We included those events in a cultural diversity video that we show employees. And we had this other event during the summer in Portland that was like the “Amazing Race” TV show. The Portland event had 14 challenges, and each one of those had a diversity component. One of them was, “OK, you have to complete this task, but the person giving the instructions only spoke Spanish.” And none of the managers got it done, if I recall correctly. (laughs) We put headphones on some people and had them try to order a coffee from Starbucks without the ability to hear. In another challenge, a person was blindfolded and had to actually find a guide dog and navigate a course. The managers had a lot of ‘ah-hah!’ moments. AM: We were invited to a conference on accessibility issues that American Airlines held several years ago. They also invited then-Miss America, Heather Whitestone, who is deaf. They asked her if her flight was good. It was a benign question. Her response was anything but. She was really frustrated. Apparently some emergency happened on the flight, and the captain announced to the passengers what was going on, but since she’s deaf, she had no clue what was happening. She saw the reaction on all the passengers’ faces, but nobody could tell her what was going on. She asked American Airlines: “What are you going to do for passengers who are deaf when something happens? Have you thought about your passengers who are deaf, and can’t hear the commands or understand what’s going on? Did you all think about that when you were putting together modifications for building your planes?”

AM: Putting them in the other person’s shoes is great. Curtis: We’ve even had workshops on airplane lavatories, which are a big problem as well. Everybody on the team had to undertake the role of a person with a different disability. We had one guy wear leather work gloves. We had a person with an arm in a sling, which is a minor thing, but it’s not just about using that arm, it’s also about balance. You face balance challenges when you can’t use both of your arms. We had a person who normally wears contacts go two days without them to experience the vision difficulties some people

Curtis: Being deaf is all about communication. It’s the same as if I went on a trip to Japan and couldn’t understand anybody. It’s a real hindrance. It’s the same thing for a deaf person. You don’t hear any of the announcements. Yet nobody can see that you’re deaf, so that adds to the challenge. So we’ve worked on systems that would provide conversation as well as translate. I don’t think the technology is there yet, but we’re working on a means of communicating. It’s something that everybody’s going to have to address as Baby Boomers age. ABILITY 19

Brown: Vicki, as you know, they have those dropdown screens now on some airplanes that use captioning. Maybe the airlines need to utilize those a little bit more with all the messages that they communicate, even at the beginning and end of the flight. I think that’s one of the ways we could probably move forward. Captioning is really important for us with all our communications, all our videos, all our training. We make sure that we have it available, and even with our WebEx meetings, we can contract with someone like Colorado Captioning to make sure information during the WebEx meetings is available to everyone. I think we’re headed in that direction; we just haven’t completely gotten there yet. AM: There’s voice recognition software. Announcements could show up on a screen. Curtis: I’ve been working with that software. It is a real challenge, I’ll tell you. I guess I must mumble a lot.

I know in wheelchair stowage, the airlines work really closely together. They say “This is what we do. What do you do?” Nobody wants to ruin the trip. We talked about training people. It seems that with the baggage handlers, however, there’s an awful lot of turnover. You can get summer students working, and they’ll be in there for three months and maybe see two wheelchairs.

Potter: That reminds me of the opening of The Right Stuff. You remember, where the book talks about all the pilots seeming to have this kind of relaxed Southern accent. Writer Tom Wolfe’s contention is that it all comes from that barnstorming test pilot Chuck Yeager. So the voice-recognition systems have to be able to deal with the accents, too, I suppose.

They try to work really hard on coming up with the right answers. This is a passion of mine. I’m getting older, and when I retire, which is not too many years off, I’m going to be flying, and I want to be comfortable.

Curtis: These systems just need to be more advanced.

Curtis: If we’re lucky enough, we’ll all grow old enough to experience some of these issues. Until then, it’s just the everyday challenges, like having too many things in your hand, or trying to do too many tasks at once.

AM: The trend is heading in that direction. You mentioned the restrooms earlier. Is anything happening with those? Curtis: The restroom in itself is a big challenge on a single-aisle airplane like a 737. Space is such a rare commodity. It’s so expensive. You cannot remove seats, so there’s the challenge of making the lavatory itself accessible. And the aisle is so narrow that even if you have an accessible lavatory, you still have to provide some means of getting the person to the lavatory. And that gets to be a challenge. We’re about to undertake another project this fall to make the lavatory more accessible. We would like to address the needs of anybody who typically uses a wheelchair, is blind or has dexterity issues. Being blind in the lavatory is particularly challenging. You literally have to touch everything to find the flush handle, the sink or the faucet. So we’re going to take a serious look at this very soon. We’d like to make it totally inclusive. We have engineers and others within the company whom we can ask to come help us and get some good feedback. We have a great network of airlines that we work with. They try to do anything possible to be accommodating and to make sure their services are accessible. In our network, we have a few people who will say, “This is becoming a problem in the airplane. Is there something you can think of to do?” And we’ll work together. 20

They’re at the service end of it, we’re at the airplane end of it, so we team up to come up with solutions. I’m kind of sensitive about sharing things that a certain airline is doing, but I always strongly suggest that they send their solution to the competition. I don’t know if they do that or not. I do know that it’s a great network of people; everybody wants to make everything as accessible as possible. Oregon State University was an important part of the workshop on stowing motorized wheelchairs on airplanes. They co-hosted the workshop with Boeing and helped coordinate participation by all the non-Boeing players.

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AM: It’s like you said earlier: At any moment, any of us could find ourselves experiencing these issues.

Potter: We have a month during which we deal with disability employment awareness. AM: Is that October? Potter: It is October. We do some communications, we do a video for our employees, we do a series of events, again, like the wheelchair basketball game. We try to educate our employees in general about the need to respect people of different backgrounds and recognize the challenges that people of different abilities face. Curtis: We’ve had discussions about the philosophy of So-and-So is not a “typical” paraplegic, because they’re so “active.” We finally came to the conclusion that the people that we thought were not typical are very typical. We dealt with a guy at Disney who’s a double amputee, lost both his legs, and he parasails, sails, works at the Disney Institute. The guy is absolutely remarkable. There’s nothing he cannot do. We were like, “Oh, he’s different, he’s not typical.” But now we’re finding out that he’s the norm. Just because he’s missing legs doesn’t mean that he can’t do all those things. It’s really refreshing to work with him. boeing.com

ecently we caught up with some good folks responsible for diversity and accessibility issues at HP aka Hewlett Packard. As you may know, HP has an exceptional reputation for turning out quality computers and computer peripherals such as printers, but they’re also pretty solid at achieving a diverse workforce and making their products accessible to people of all abilities. Here Mary Ellen Parker, HP’s manager of Global Inclusion and Diverse Talent and Michael Takemura, the company’s Accessibility Program Office director spoke with us.

Parker: Any employee can join. The goal of the DNRG is to raise awareness among employees and within the company about disabilities. The group also works with Michael Takemura, director of HP’s Accessibility Program Office to test HP products and work with our developers to test internal applications and tools. The DNRG also bring in speakers and host some wonderful clients.

AM: Let’s start with what you do.

Parker: Yes. The employee may have a disability or have a family member with a disability. The group is always sharing experiences and updating members about new assistive technology tools. Sharing best practices and driving awareness is a big part of their charter.

Parker: I work with HP’s global disability programs, its global-flexible-work arrangement program, as well as manage a few of the diversity leadership development workshops and recruiting conferences. AM: Let’s talk about HP’s initiatives in the disability and diversity areas. Parker: This year we have a new Executive Diversity Champion who was appointed by the executive committee. The Executive Diversity Champion will chair a newly formed HP Global Diversity Advisory Board focused on aligning diversity priorities to support and drive company-wide strategies. Additionally, HP sponsors diversity recruiting conferences such as the Society of Women Engineers and the National Society of Black Engineers. We have also organized regional diversity summits for employees. We actually held one in Bulgaria in January and one in San Diego recently. The summits are held to publicize job opportunities and promote networking and career and leadership development. We have about 81 employee resource groups representing many diverse groups. I’m the Human Resource liaison with our global HP Disability Network and Resource Group (DNRG), which currently has approximately 80 members globally. AM: What does it mean to be a member?

AM: Are individuals with disabilities typically joining in?

AM: Do you know of any stories in which employees have come up with solutions that have had an impact on the product line? Takemura: Yes. Take our HP notebook products for example. To open the display, all notebooks employ a “single latch design” instead of the traditional “two latches” (one on either side of the display). This meets the design principle of single-handed operation, reduces the cost of the product and improves reliability. The Accessibility Program Office and our HP Global Accessibility team work to integrate accessibility into the product design processes, and the customer lifecycle (from how products are purchased, to customer support, to packaging, to documentation, and so on), in an effort to make HP products, services and information more accessible to individuals with disabilities or age-related limitations. Other design examples include the development of an expansion base for notebook PCs that allow the height of the display to be adjusted. There is also a new “dual hinge” display that allows adjustability to help users of bifocals, trifocals, or multifocal lenses adjust the display to a more comfortable position. The Accessibility Program Office also works with the ABILITY 21

hp.com external website and our @hp portal employee intranet site to make sure they are accessible to customers and employees who are blind, or who have low vision and use assistive technology such as screen readers or screen magnification products. AM: How do you conduct outreach to qualified applicants who have disabilities? Parker: One way is by attending diversity conferences. HP also participates in the Department of Labor Circle of Champions. In 2004, HP was honored with the Department of Labor’s New Freedom Award. We have access to their database of people with disabilities, which we’ve shared with our recruiting organization. So our staffing organization has access to quite a few databases and resumes. AM: I didn’t realize that the Department of Labor had an existing database. Parker: It’s an extensive resume database maintained by the Department of Labor’s Office of Disability Employment Policy (ODEP). AM: Tell me more about the award that you won? Parker: The company won the award for HP’s commitment to employees with disabilities and for our efforts to maintain an accessible workplace. The award recognized HP for demonstrating innovative efforts to train, recruit and hire people with disabilities. HP is the first information technology manufacturer to have the accessibility features of all its products documented and available online. We take an active role in the development of worldwide accessibility standards and regulations. For instance, we have tools and services available for our employees with disabilities. For employees with certain disabilities, we have a special hotline for our IT support desk. We also offer WordZXpressed, a voicemail transcription and telephone dictation service. For someone who is hard of hearing or deaf, there is a service where they can send phone messages, which can be translated quickly and sent back to them via email. AM: How does the disability employee resource group work? Do they have scheduled meetings or is it more ad hoc? Parker: This particular group, the Disability Network and Resource Group (DNRG), meets on a monthly basis. The meetings are scheduled via a conference line and with Sprint Relay Conference Captioning (RCC). The challenging part is finding a time that works for everyone in every time zone, since we have members spread around the world. In addition to the monthly meetings, the DNRG tries to have an external or internal speaker on a quarterly basis. We have a member who is legally blind and just ran the 22

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Boston Marathon for the second time. We also have a member who is in a wheelchair, and is headed to the Paralympics as a table tennis player. These are the kinds of members who, maybe once a quarter, come in and share their experiences. It’s just amazing to listen to what they have accomplished. AM: What do you think HP is doing well? Parker: We have a special group internally that handles special accommodations and equipment requests. We also have a dedicated internal group that manages work related issues that employees have. HP does a great job in bringing awareness about disabilities, whether it’s a disability that people are born with, or that they acquired later in life due to illness, accidents or aging. As a manager at a global company, I try to document all the different country laws regarding disability. When it’s just the U.S., it’s easier, but it’s really challenging to know the different laws in other countries. Some countries mandate that companies hire a certain percentage of their disabled workforce in that country. Take Brazil, for example. We have a training program there called ABLE in which HP trains the participants.HP then works with our businesses in that location to fill job openings with the ABLE trainees. HP also hires from the pool of candidates developed through the program. HP has a similar successful program in Japan. Sometimes HP exceeds the goal of hiring that is mandated by the country. It’s rewarding. HP has succeeded in not just bringing somebody in with a disability to meet a number that’s mandated, but we also train these people and try to accommodate them. We make sure they know about the different tools and services HP has. They might have a special need, so we’ll work with the country HR managers to make sure that they receive whatever it is that they need. Finally, HP is focusing more attention on the aging workforce. Many HP customers are experiencing a significant aging of their workforce, and are looking for ways to make those employees more productive. These customers look to HP for technology, best practices, and third party solutions that work together to help them manage this rapidly growing issue. AM: Anything else that HP is doing that’s unique, interesting or should be highlighted? Parker: Globally we offer our employees an umbrella of flexible work arrangements. As manager of the disabilities program, I find that for a lot of employees who are disabled, it’s much easier for them to work from home;sometimes that is the only option, as some people with disabilities can’t drive. Since 1973 HP has been a champion of flexible work arrangements, which allow employees to meet the challenges of both their professional and personal lives.

If a person with disabilities were interviewing with HP and another comparable company that didn’t have such a flexible work arrangement, the potential candidate would probably pick HP over the other company, because of our flexible work arrangements. AM: Do you know of any situations where people have done interviews from their home office? Parker: Yes, our recruiting department regularly conducts virtual interviews. AM: Has anyone been hired whom no one from HP has met in person? Parker: I can’t confirm that, because I’m not in recruiting; but I do know that we conduct virtual interviews.

jobs. We’ve also had disability mentoring days, which are another great way to introduce job seekers with disabilities to our company and our workforce. AM: The Disability Mentoring Days sponsored by the American Association of People with Disabilities (AAPD)? Parker: Exactly. HP was actually one of the first companies to take Disability Mentoring Day global at our locations around the world. We’ve also attended the Career Opportunities for Students with Disabilities conference, and have partnered with them to sponsor their conferences in the past. hp.com

AM: That’s great. Especially for those who have transportation challenges, since public transportation is not what it should be. Parker: We don’t have any public transportation that would bring you to our facility here, outside of Boston. AM: Have you noticed that you can now put your video resume online? Parker: I have heard of that. I think it’s great in that it makes it easier for people with disabilities to apply for ABILITY 23

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nita Kaiser was well on the path to a career in business, when a car accident sent her in another direction. Now she’s working on a Ph.D. that will help her make her mark in the area spinal cord injury rehabilitation. As a new mom, she’s creating innovative, hands-free ways to care for her growing baby girl. Here she speaks with ABILITY Magazine.

ABILITY Magazine: We’ve noticed that you’ve done some writing. Anita Kaiser: I wrote a health article for a magazine called Outspoken for the Canadian Paraplegic Association. I’ve also published a few mini-research papers.

AM: What are you doing now? Kaiser: The master’s degree that I completed before I had my baby was in rehabilitation science, and I’m working on a doctorate in that field. I would like to have a career in rehabilitation science, and to continue conducting research on spinal cord injury to improve the quality of life of people living with it. I’m also involved with the Canadian Spinal Research Organization, which has an affiliated arm, the American Spinal Research Organization. They’re both geared towards finding a cure for paralysis. So I’m very much involved with that as well, although the research that I would do myself once I finish the doctorate would be more in line with rehab.

AM: Before your 1996 injury, what were you doing? Kaiser: I’d just completed my undergraduate degree and started working full-time as a computer operator. My plan was to work for about a year, make some money and return to school. Ironically, I was looking at studying either physiotherapy or chiropractics. I had the injury and spent a whole year in rehab getting physiotherapy. AM: So you got injured on purpose, then, just to experience it? Kaiser: (laughs) I was joking while I was in rehab that, “Oh, I’m here just getting my practical right now, and I’ll go back and get the theory later.” But life has a funny way of working itself out. I studied computers the whole way through university because it helped pay for my education; however, it was kind of off-course for me. I was working in the sciences, but the computer classes were geared more towards business. So I really felt in many ways that my injury put my life back on track. Being in rehab, I managed to get connected with the right people, so as soon as I completed my therapy, I began volunteering with different organizations in the health care field. Obviously at that point, my focus was spinal cord injury research and rehab. I’ve been in it now for the last 10 or 12 years and really enjoy it.

AM: Are you doing any lab work while you work on your PhD? Kaiser: No. Although I did lab work while I was completing my master’s, when I got a full scholarship in the last year I had to quit, as one of the criteria for the scholarship is to be in school full-time. I’m still affiliated with the hospital because my university and the hospital are linked, but I’m not working on any other research projects other than my own studies and my thesis. Recently, however, I went on maternity leave. AM: I heard that you had worked with a program called SMARTRISK.

Anita and husband, Faisal, will soon move to a new home that better accommodates her getting around with ease.

AM: What did you study? Kaiser: My undergraduate degree was in applied chemistry and biology, which wasn’t leading toward a career in rehab. I would have been more focused in basic sciences, such as working in a lab for a pharmaceutical company. But I always enjoyed health care, and as I finished my degree I wanted to get into that field, namely physiotherapy and chiropractics. So when my accident happened, I got involved and connected in the research at the hospital and with organizations that were affiliated with the hospital.

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Kaiser: Yes, SMARTRISK is an organization based here in Canada that is dedicated to preventing injuries and saving lives. One of its programs is SMARTRISK Heroes, which is basically a traveling road show. We go all across Canada and into the States to speak to high school students to encourage them to apply five key principles to their lives that will help to prevent them from being seriously hurt or killed, or getting other individuals hurt or killed. I tell students about how I got injured, and then from there give them a strategy and principles that they can apply to their lives. High school students are the biggest risk-takers, especially those young men who perceive themselves as being invincible. That’s the age when they start driving, and, of course, there are parties and drinking. The five strategies are: buckle up, drive sober, wear the gear, get trained and think first.

days. How can people pay attention to the road if they’re so busy talking on the phone? It’s learning how to be safe in everything you do in life, to limit your chances of injury. AM: So you had a baby recently? Kaiser: In January. AM: Did your doctors express any concerns about you having a child? Kaiser: My level of injury is different from that of the late Christopher Reeve. He was a quadriplegic as well, but his injury was very high, at the top vertebrae of his neck. He had literally no movement of his arms, nothing basically from the neck down. AM: He would have had a harder time having a baby…

AM: At that age, they feel like they’re bulletproof. Kaiser: Absolutely. As I look back on my life I think, “Wow, my injury could have happened so much sooner.” And I wasn’t even that high a risk-taker, compared to many teenage boys. But still, there are so many things that we do that are not smart, and that we could do in a much safer way. We take chances that are completely unnecessary. AM: Tell me a little bit about your talk. How do you describe your situation, and how would it have changed if you had had a program like SMARTRISK before you had the accident? Kaiser: In my case, I sustained a motor vehicle injury. I was a passenger in my sister’s car. We’d gone on a long road trip to visit friends for a fall weekend. We knew that our tires were bald, but thought, “It’s one last road trip. Once we get back, we’ll change the tires and get the car ready for winter.”

Kaiser: (laughs) Not necessarily. In general, men with spinal cord injuries have a harder time having a baby than women because many of them will have some form of erectile dysfunction. But it’s not to say that they don’t still have sperm. In some cases, some men are still able to have an erection and have a child on their own, whereas other men may need some sort of intervention to retrieve sperm and implant it in the female. So most women, as long as there isn’t any internal damage can get pregnant naturally, carry a baby full-term and deliver it as well. There’s no reason why you would need a C-section, unless there was a complication. In my case, my daughter decided to come five weeks early. She was kind of small, and she pretty much slipped out. I didn’t even need any vacuum, forceps or

Often, you don’t really think about the long-term consequences of not maintaining your car, especially for a long drive like that. Now I always check out the car, especially the tires, before I even get into it, and make sure I keep up with all the maintenance checks. In every aspect of life, you have to think about buckling up, not just in the car. It’s buckling up a life jacket or a helmet. “Driving sober” is not just drinking and driving; it’s also avoiding driving when you’re really sleepy or talking on a cell phone, which is a huge problem these 26

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With adapted childcare equipment, Kaiser has help caring for baby Olivia.

anything like that. The pregnancy and birth went quite smoothly. I think it would for most women with a spinal cord injury. It’s still considered high-risk because of the lack of sensation and movement, so we’re closely monitored throughout the pregnancy. But typically complications would not be expected. AM: Can you hold your daughter’s bottle? Kaiser: Oh, yes, that’s what I was going to say. I’m lucky that as a quadriplegic (anyone who has injury in the cervical spine—the neck), I have most of my arm function. Christopher Reeve broke the top two vertebrae in his neck, so he had literally no arm function at all, whereas I broke the bottom two vertebrae in my neck. I don’t have full finger function. Still, I’m actually able to do quite a lot for my child. I can feed her, I can change her, I can dress her. I often use my teeth to help me with fine motor function, such as fastening buttons on her outfits. Sometimes I’ll have to use my teeth if I can’t use the palms of my hand to close it. For changing the diapers, I’ll grab the tops of the diapers with my teeth to close it. So a lot of it is establishing my own style of doing things, but I’ve actually made out quite well. I’ve gotten some adaptive products. I had a crib built with the railing to move sideways rather than up and down, so I can wheel underneath it. That way I can get in and under the crib to attend to her. I had a table built to my height so I can change her, because most changing tables are very high and often have drawers underneath. So there are a lot of things I can do; it’s just different from how my husband would do them. But I’ve been able to figure out how to do most things for her, except bathing. My husband finds it a challenge, too. He usually tries to get someone else involved and it ends up being a three-person event. We have someone hold the baby, while my husband washes her, and I dry her afterwards. AM: It sounds like any other young parent in that situation. It takes a village to raise a child. Kaiser: We’ve been lucky. The family’s been supportive. Especially the first few weeks of dealing with a newborn, which are crazy for any new parent. We’ve had family come in and help us out a lot. We gave in about two or three weeks into the whole process and

decided to get a night nanny. So we have a lady who comes in in the evening and stays overnight so we can sleep and be fresh and alert to deal with our daughter during the day. So that’s worked out well. People have asked me, what it’s like to be a parent. I think I feel like any other person who’s had a baby. We’re obviously excited. I’m happy that I could still have children. It’s always been a dream of mine to have a child. Just like any parent, you want to be the best you can be and be a great model for your child. I think a lot of times people with disabilities are perceived to be asexual or incapable of taking care of a child. So that’s one of the things that I also consider to be very important, to be able to represent the disability population and prove to extended family members and to society that we can be just as capable as anyone else. AM: Not that you have much free time right now, what with raising the baby, but what other things do you do for leisure? Kaiser: Just before I went back to school to do the master’s, I was actually swimming competitively. I swam for about three years. I was actually trying to train for the Olympics, but I didn’t quite make it that far. I was at provincial level training for the national team. Unfortunately, I missed qualifying by just a couple seconds in my final year before I went back to school. I loved water sports. I got certified in scuba diving after ABILITY 27

my injury. I also got my level 3 sailing rating. I have enjoyed water skiing, downhill skiing, horseback riding and biking.

process of putting that together now. What are you going to do other than raise a wonderful child? What’s on your to-do list?

AM: So you have adaptive programs in different places in Canada?

Kaiser: I’ve enjoyed everything I’ve been involved with since my injury, all the various organizations, including a hospital that does research geared towards rehab and improving quality of life. Aside from SMARTRISK, I’ve done a lot of work with the Canadian Paraplegic Association, doing peer support by helping people who are newly injured to get on with their lives. I got a lot of great help after my injury, so this is my way to give back.

Kaiser: I got involved in a lot of these things in rehab. I was very athletic before my injury and knowing that I could still get involved in sports helped me to cope with my injury. A lot of the sports I’ve done have been adaptive. Almost every sport that I used to do before, I can still do now, either using modified equipment or a modified process. It’s been great. I really enjoy it. Obviously, I don’t have as much time now, but hopefully as my daughter starts to get a little older, I’ll be able to enjoy some sports with her. AM: You’ve done mono-skiing? Kaiser: I haven’t done the mono-ski. But I have done the bi-ski. The mono-ski, I think, is more geared toward paraplegics. You really need to have good upper body position for that. The bi-ski is very similar, it’s just that it’s a bucket seat that sits on two skis. AM: The mono is a little more difficult, too. Depending on where your level is, the upper body has to be capable of leaning forward. We just came back from a trip to Utah and skied with several people with different levels of spinal cord injury. We checked out the mono-skis, which was—

My master’s degree thesis focused on parenting when one has a spinal cord injury, so that was really great background for me. I’m continuing in that field with the doctorate. One of the things I’d like to do is open a parenting clinic at the rehab hospital where I stayed. We have a gynecology clinic, we have a urology clinic, which also functions a bit as a fertility clinic for the men, but there’s nothing to help women once they’ve become pregnant or have a child. In some cases, individuals who were either thinking about having children or who already have kids get injured, and need to learn how to parent with a disability. I’d like to make sure they have the information, services and support they need. On personal level, we’re in the middle of building a house that is wheelchair-accessible. We’re hoping to move in soon. AM: Anything else you might want to share?

Kaiser: Oh, you tried it? AM: It wasn’t as easy as it looked. Kaiser: I skied a lot before my injury, so I thought it would be quite simple. I thought that because you’re so low to the ground that your whole center of balance would make it easier than it is. It takes some control to get the hang of it.

Kaiser: In general, I’m really happy with my life. One of my greatest accomplishments, out of everything I’ve done, is having our little girl. I enjoy being a mother, watching her grow and working to raise her to be a wonderful individual who is compassionate and accepting of all individuals, regardless of their abilities.

AM: Do you know a person named Chris Waddell? He’s a multi-gold medal Paralympian. We went to the top of the mountain where they held the Olympic men’s ski event in Utah, and he just went screaming down that mountain. It was just amazing to see him in action. Kaiser: Some friends of mine have sent pictures of Paralympic skiers, and it’s just phenomenal. AM: Waddell has also become a public speaker. Kaiser: Many of them become motivational speakers. What they’ve accomplished really helps inspire other people—disabled or not—to strive for their dreams and pursue whatever it is they feel passionate about. AM: His new thing is climbing Kilimanjaro. He’s in the 28

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Kaiser is a scholarship student at the University of Toronto.

Top and center: The Kennedys, a family that produced countless public servants, including President Kennedy, bottom center, and his nephew, Anthony, above left in bow tie and William, far right in open collar shirt.

n his 1961 inaugural address, President Kennedy implored Americans: “Ask not what your country can do for you, ask what you can do for your country.” That same year, he founded the Peace Corps which, over the last four-plus decades, has supplied 190,000 volunteers to 139 host countries. Peace Corps volunteers work on projects that range from health and economic development initiatives to AIDS education and environmental preservation. While the Kennedys have always encouraged service abroad, they’ve also demonstrated public service and charity at home: Within the late President’s own family, one brother served as U.S. Attorney General; another has been a United States Senator since 1962. One of the President sisters started the Special Olympics, which one son now runs, while a daughter serves as First Lady of California. Still another Kennedy served as ambas-

The John F. Kennedy Presidential Library and Museum is located on a 10-acre park in Boston, MA. It is dedicated to the memory of our nation’s 35th president. Take a virtual tour of the library on line at jfklibrary.org

sador to Ireland and founded Very Special Arts, a nonprofit that nurtures the artistic talents of children who are mentally and/or physically disabled. In the following pages, we meet two members of the current generation of Kennedys who are continuing the family legacy of service: Anthony Kennedy Shriver is the founder of Best Buddies, an international non-profit organization which enhances the lives of people with intellectual disabilities by providing opportunities for friendships and employment. His cousin, William Kennedy Smith, MD, helms iCons, an organization that links a worldwide group of physicians and patients through the internet. Clearly, the clarion call to public service that President Kennedy issued over 40 years ago still resounds. ABILITY 29

ounded in 1989 by Anthony Kennedy Shriver, Best Buddies is an international nonprofit organization dedicated to fostering one-on-one friendships between people with and without intellectual disabilities. Here ABILITY’s Chet Cooper speaks with Shriver about the worldwide growth of Best Buddies, including successful initiatives and expansion into the Middle East. Shriver: The great thing about Best Buddies is there’s something for everybody. You can be a volunteer in some shape, form or fashion, whether you’re volunteering to get your kids involved, whether your son or daughter is involved in their school program, whether you want to be a mentor yourself as an adult, whether you want to get an online Buddy, whether you’re an employer and want to hire someone with a disability to work in your office—if you’ve got any sense of motivation and determination and want to give back, there’s a role for you at Best Buddies, which I think is pretty unique. Even in Special Olympics, for most people, you can be a coach or a spectator, but you’re not going to run the 50-yard dash. In Best Buddies, you’re running the 50-yard dash with your Buddy. People get a different level of experience by participating, as opposed to writing a check, though that’s important, too. But beyond writing checks, we need people to get involved and give their time. Cooper: We did an article about you years and years ago. Tell me about how your program’s expanded. Shriver: There are about 220 people who work for Best Buddies in all 50 states now, and another 100 people outside the U.S. in 41 countries. Our budget’s over $20 million. We run six different divisions. We’ve got a middle school program, high schools, colleges. We have an adult-based program called Best Buddies Citizens. We have an online program called eBuddies. We have our jobs program, which I think we had when I talked to you guys before. Our support-employ program is now in a few different cities in Florida, Massachusettes and California, and we’re trying to expand to other states. We’re actually just launching that in Poland as well. The economy’s tough, but thank God we’ve got an international, worldwide organization, where we’ve got lots of different streams of revenue coming in from all over the world, so we’re not as dependent on the state of the U.S. market.

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Cooper: Did you ever picture it growing into what it’s become today? Shriver: I’m not great at thinking what’s going to happen five, 10 years down the road. I just keep my head down and keep working hard toward what I think is right for Best Buddies. It leads me wherever it leads me. We are pleased with where we are today, but we still have huge work to do. There are five million people with intellectual disabilities in the U.S. alone. They say there’s 40 to 50 million people with disabilities in the U.S., and close to 200 million worldwide with intellectual disabilities, so the population’s huge, and we’re just touching the tip of the iceberg. It’s exciting and rewarding, but it’s a daunting task. This year, I spent time in Russia, Turkey, Poland, the Middle East and Spain. People all over the world are dealing with intellectual disabilities that pose incredible challenges; the need is so enormous. There’s a great opportunity to make a difference, so I’m grateful for that. But it keeps you on a treadmill all the time, that’s for sure. Cooper: Tell me about what’s happening with your gala. Shriver: It’s going to be the biggest ball we’ve ever held. We’ll probably raise more than $3 million in one night, so we’re way ahead of where we’ve been in the past. We’re honoring Sheikha Moza, the first lady of Qatar. We’re giving her a Spirit of Leadership Award. We’re doing a lot of good things with Qatar, and programs that benefit people with disabilities are expanding in that country. We want to raise awareness about her highness’s work, not only in Qatar but in the Middle East as a whole. We hope that her leadership will inspire other people in her position—either with her wealth or influence— to make a difference. I met the Emir, Sheikh Hamad as well, talked to him and had dinner with him. He also seems very interested in getting other people to follow their lead in terms of educating and providing opportunities for people with disabilities in that part of the world, and in the world at large. That’s a huge goal. The ball will also commemorate 20 years of holding this event at my parents’ home. It’s pretty unusual for an event like this to take place at a private home on this scale for 20 years straight. I think it’s a huge accomplishment that the organization has been able to make that happen, and keep the event engaging, motivating

and inspiring enough for people to come back year after year. We have people who have been coming for 20 years. That means a lot to us. We’ve got additional support as a result of this event being our 20th anniversary. We’re going to have a great, diverse group from all walks of the world, and great representation from the Middle East. We’ve got some Buddy pairs coming from Qatar who are going to speak. We just relocated two people from the national office here to live in Qatar. I look forward to expanding to other countries in the Middle East with the guidance and support of the disability communities in those countries. I think it’s the beginning of something special. Cooper: That’s great. Shriver: Yeah, right now in Qatar, our people are training Qataris to run the program after they leave. So we’re getting a lot of traction there. We actually just met with people at Carnegie Mellon University, who want Best Buddies there. They are going to recruit a bunch of their students to be Buddies and escort people with intellectual disabilities to a museum once a month. We’re trying to get some corporate volunteers to do that once a month, as well. Cooper: Have you heard about the ABILITY House? Shriver: Yes. Cooper: We build homes, usually in partnership with either Habitat for Humanity (HFH) or the Fuller Center for Housing, for families in which a member has a disability. Volunteers with disabilities build the homes. Shriver: Great! That’s where we could use Best Buddies. Get the kids out there with their Buddies doing the homes. Cooper: I just flew to North Carolina to start a house with Meredith College and Wake County HFH. Shriver: Do you have the money to build multiple homes? Is that a struggle? Or do you do one at a time?

(l) Shriver with his Mom, Eunice Kennedy Shriver, (c) with Best Buddies logo, by Keith Haring, and (r) with and his father Sargent Shriver.

How does it work? Cooper: At the moment one at a time. Our challenge is finding funding and getting corporations to work with us. Like Habitat, we go through churches, foundations, corporations… Shriver: I’d like to work it in somehow and try to do one for sure. Cooper: We might look at a model in which we do it in conjunction with your affiliates around the country. Shriver: That would be great. I’d like to do it. In the past, we’ve looked at doing something like that, as well at doing parks and similar projects. I just don’t want to be responsible for all the mechanics of it; I’d prefer to partner with somebody else. But I’ve definitely been wanting to do something like that for a while. Cooper: Going back to the center in Qatar, what was your first thought when you visited initially? Shriver: I thought it was remarkable that they’d made this huge commitment to deal with disabilities in such a small country. I’ve been to lots of countries with huge amounts of resources, but they’re not investing that kind of money into developing world-class facilities that focus on all forms of disabilities. So I think it’s an enormous reflection of Qatar’s values, and to have the First Lady so committed to it and interested in it, I think, is truly impressive and unique. I continue to be impressed by what they’re doing: the programs they provide, the facility, and the expertise of the people there who are leading the facility. From the moment I got there, I was amazed at their efforts to expand the facility, so it can provide additional services. Cooper: I was amazed too. It’s state of the art. Shriver: For sure. I think Her Highness and her center have a commitment to excellence in every field they pursue. The more I get to know her and talk to her, the

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Anthony Kennedy Shriver and Her Highness Sheikha Moza, First Lady of Qatar, flank a portrait of Shriver’s uncle JFK.

more I see the consistency of their approach in everything they do. I think the center is one aspect of it all, but from the sports facilities, the education facilities, the new equestrian facility that they’re building, their bid for the Olympics, the hotel they’re building, the resort, everything is first-class. So it’s great that they haven’t left out people with intellectual disabilities. Often nations, rich nations, look at that population last, not first. They’re establishing the blueprint for the country, where that group is right at the top of the list. Cooper: Anything else you’d like to share? Shriver: I have so many different things happening all over the world that I could go on forever. I don’t know even where to start.

Shriver: 1989. Next year’s our 20th anniversary. Time flies. Cooper: I think it’s great that some of your Buddies turn around and become mentors as well. Shriver: It works nicely. Cooper: Tell me more about your job program. Shriver: I love helping people get jobs, helping them to get their own apartment, get married, have kids—it’s really remarkable. We want to give people with disabilities the opportunity to choose different types of jobs, not to have them all be in the service industries. If you want to have a white-collar job, you want to put a tie and a jacket on, that job should be available to you.

Cooper: Do you work with Special Olympics? Shriver: Definitely. As you know, my mom (Eunice Kennedy Shriver) started it and my brother (Timothy) runs it. We collaborate on various projects around the world, when it makes sense. We obviously work with the same population as well, but with a different focus. Cooper: Do you have any specific programs in which Best Buddies are trained as athletes? Shriver: There are different states and regions where it makes sense for the Buddy to become an athlete, or where we have athletes who want to mentor or Buddy. We do it where it works and where we’ve got the traction to do it. Cooper: When did you start? 32

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I’m sure you’ll agree that the skill sets that a lot of people with special needs have are remarkable, and they can really be an enormous asset to an employer in any office. I think for us to be able to share that knowledge with potential employers is a great gift. Once they accept it and get engaged in it, it’s an enormously important and motivating thing not only for their employees, but also for the leadership team in any office. So it’s something I’m proud to share, and I hope we’ll continue to expand it and get more people employed. The unemployment rate for people with disabilities is huge. Imagine if that was the case for everybody; the whole country would be upside-down. But that’s how it is for people with intellectual disabilities. We get some good jobs in a lot of different cities, but we definitely need more. So again, we’ve got a lot of work to do.

Smith presents during a Demining Ceremony in Nicaragua

lobe-trotting William K. Smith, MD, founded the Center for International Rehabilitation, formerly known as Physicians Against Land Mines. The latter was co-recipient of a 1997 Nobel Peace Prize. These days, Smith also heads up iCons, an umbrella organization for a worldwide group of physicians linked to each other and to patients throught the internet. Dr. Smith recently spoke with ABILITY’s Chet Cooper, and Thomas Chappell, MD, the magazine’s managing health editor. Chet Cooper: We’ve met. Dr. William K. Smith: At the UN, right? Cooper: Yes, there and the World Bank— during their conference on disabilities. I think I met Eunice Kennedy as well that day.

Smith: There are a lot of people in my family running around. (laughter) A number of us work on disability issues. (Smith’s mother, Jean Kennedy Smith, founded Very Special Arts, “to create a society where all people with disabilities learn through, participate in and enjoy the arts.”)

Smith: This past year, we completed training for about 110 Iraqi health professionals, including physical therapists, hospital administrators and hospital-based physicians. Through the Iraqi Ministry of Health—funded by the World Bank—we engaged the University Clinical Center in Tuzla, our partner program in Bosnia. The Iraqis were flown there and received two to six weeks of training, which they took back to Iraq. So I’ve been heavily involved in disability issues and training issues in conflict and post-conflict areas for about 12 years. Cooper: You’ve used the internet in a very engaging way. Smith: One of our board members, Ken Rutherford, is a land mine survivor. He did his PhD thesis on how the internet, as a low-cost tool to connect people, was crucial in the formation of the International Campaign to Ban Land Mines. This is rather remarkable because it really wasn’t used nearly as much as 10 years ago. We rely on it extensively for education and training purposes now with our distance learning programs, and in our most recent initiative to connect doctors around clinical consultation.

Cooper: How did you get involved with iCons? Smith: I have a cousin who lost a leg to osteosarcoma when he was fairly young. After completing my residency at Northwestern— I’m a physiatrist by training— I then trained as a prosthetist. After medical school, I spent time overseas with the International Medical Corps in Somalia, where I got a lot of exposure to people with land mine injuries. I became interested in amputee care and looked into it. In 1996, I started Physicians Against Land Mines. Later, Princess Diana got involved and the issue picked up a lot of momentum for a while. We started the Center for International Rehabilitation in Chicago to work on mobility aids for those with land mine injuries, and other people with disabilities in conflict and post-conflict areas. Then, in ‘98, we started the first distance learning course on prosthetics in Latin America, working with clinics that served those wounded in war. Later, we expanded that program to the Balkans. Dr. Thomas Chappell: You’ve also worked with Iraqi physicians?

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This helps doctors in remote and/or medically underserved areas, such as post-conflict areas, where people tend to have poor access to specialty care. This could also be physicians on the Indian reservations in the U.S., or in inner-city areas that are underserved. So we’re trying to connect many of the physicians. Partner organizations such as the National Arab American Medical Association, the Iraqi Medical Science Association and the Chicago Medical Society are banding together to create a volunteer international workforce to help local physicians in Iraq, the Middle East and other countries deal with the huge humanitarian crises they face. Cooper: You’ve done a lot. Smith: I’ll mention just briefly the other big initiative that we’ve worked on: The Convention on Disability Rights, which the United Nations recently passed into international law. Cooper: It was actually your organization that was key in helping put together some of the Non-Governmental

Organization (NGO) meetings. I attended a few of them. Smith: We were on the steering committee for the International Disability Caucus (IDC). We also pulled together the International Disability Rights Monitor, once again using the internet to help us. The monitor involves a research network of about 55 countries in Latin America, Asia and Europe, where we produce regional reports on disability rights. We give microgrants to a country’s researchers to produce the reports, and we train them how to write the reports. That’s all been under the UN standard rules for the equalization of opportunity for people with disabilities. As you know, that has now been eclipsed by the Convention, which has the force of international law. So we’re in the process of updating our shadow monitoring and research methodology to reflect the protocols of the Convention. Chappell: I’m interested in being a part of your Internet physicians’ bank.

the case comes out of the inbox. You then engage in one-on-one dialogue with the requesting person. That dialogue, which is encrypted to ensure maximum patient confidentiality, can continue as long as the two sides want. At the end, the case is closed. We started with doctors, but intend to expand it to other health-related professions. We want to create a community of practice, as well as foster dialogue amongst interested professionals. We’ve been doing this as an NGO for years, whether it’s been in the land mine area or the disability area, working with ad hoc networks or connecting peer to peer. Chappell: How does the website work? Smith: You go to the site and sign up as a general member. If you want to become a volunteer or a requester, you’ll see the links. Click on those, fill out the necessary paperwork. It’s not a heavy lift. Chappell: Are there instructions about starting a chapter as well?

Cooper: Dr. Chappell is a neurosurgeon. Smith: Let me give you an overview of how the program is organized, which may provide the information you need. In one scenario, a nonprofit organization that employs physicians becomes a member organization. Their physicians are authorized to practice medicine where they work, and they service a remote or underserved population. In addition to those in the service area or underserved population, any staff of the member organization can request assistance through the iCons program. In another scenario, any three physicians can form a chapter and apply. They must be licensed to practice in the specialty that they represent, and be willing to provide three consults a year. Once you sign up with a chapter, you post your profile and get consult requests via email. Those requests contain a link. If you click on it, and decide you have the expertise to provide assistance,

(l) Smith at a wheelchair clinic in Afghanistan; (c) with students in Bosnia; (r) holding a prosthetic

Smith: Yes. People can start chapters with any mission. They can say, “We want to focus on a particular area of medicine.” Or, “we want to focus on a geographical area.” They have total freedom to do that. Their profiles and the profile of their chapter are displayed on the site, so everyone can see who they are and what they’re interested in. Cooper: Have you looked into the digital divide in these remote portions of the countries you’re working in? Smith: We’ve been dealing with those issues for the last decade or so. The New York Times technology section did a piece on our original distance-learning program back in ‘97 or ‘98. About 50 percent of our initial class had never used a computer before. At that point, a lot of people said, “You can’t do this on the internet; it doesn’t exist in these places. People aren’t going to have the skill set...” Interestingly, at Northwestern University, my

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alma mater, the prosthetics school is now handled entirely via distance learning. I’d like to think our experience had something to do with that. We’ve had success with the teacher/student/site-facilitator triad. We found that if we worked with clinics directly, and the site facilitator was invested in seeing this educational program work, they would make sure students had access to the internet. We found that many students actually used internet cafes and other means of access as well. The growth of the infrastructure itself has been phenomenal. Most of the clinics are using email as an important means of communication. To that end, our software was designed to function at about the same bandwidth as standard dial-up (28k) email access. Remote requesters don’t have to have broadband internet; they can have intermittent dial-up. To make a request, you click a button and it sends the request when it can get appropriate internet service. Chappell: How much impact do you think that we can have as consultants? I’ve done informal internet consulting in recent years. With my particular specialization, I’m likely to recommend treatment that they’re simply not going to be able to get. I’ve had friends who have actually gone places and built programs, helping out physically. They often bring older equipment that has been donated by hospitals, which have recently upgraded to newer equipment. Sometimes these can be high-level instruments such as CAT scanners. But often, in my specialty, volunteer physicians have to go back to methods used 20, 30, 40 years ago, for example, because they simply don’t have the latest tools. So if I can’t even be there to help them, even using older tools, how much impact could I have? Smith: That’s an important observation. It’s interesting to watch the paradigm shift from traditional telemedicine, with point-to-point connections between a hospital here and a hospital there, to broadband with synchronous satellite-based streaming video and audio. Yet the connections with the most resonance still seem to be regional or local: The guy in rural Ethiopia who’s looking for a solution to a problem may find a consultant in Addis Ababa, not Chicago. As you mentioned, there are cultural, geographic and economic issues, as well as other factors that will be better understood by people in similar environments dealing with similar concerns. Sometimes people just don’t know the resources that are available to them. In Nicaragua, for example, we found that there were people who were unaware of clinics that were within a 100-mile radius, and that dealt with the exact problems they had. If you’re in the Army, let’s say, you can email them about a kidney concern, and any one of a dozen renal specialists will respond. This kind of network is being expanded to NATO, and is proving to be the most durable form of telemedicine for 36

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quite a range of specialties, anything from orthopedics to ophthalmology. I would love to see people post profiles of practice environments, characterize where their own expertise is most useful and list repositories of equipment. All of these can become components of the program as a user base grows, and as the base expands, its real power emerges. Cooper: How will it be funded? Smith: It’s remarkably inexpensive. We’re currently funding it through grants and contracts we have with the Telemedicine Advanced Technology Research Center out of Fort Detrick, MD. We’re also talking to internet technology companies, health providers and foundations. We hope national organizations within a country will be licensed to raise money independently, which can be used on the spot. We’re about to establish national organizations in Bosnia, Jordan, Afghanistan and beyond. Surveys have been conducted in other Middle Eastern countries to identify groups that could take on the role of national organizations. Chappell: I’m intrigued by this and by the prospect of becoming a consultant. Maybe I’ll even start a chapter. I’m anxious to see how networking can be effective in terms of the intangibles you alluded to earlier. Smith: There’s definitely a learning curve. I think of it as being similar to a conference, in the sense that folks who are presenting are obviously central. Then there’s the next ring of people who get up, ask questions and engage the speakers. Beyond that is a row of people who come to conferences fairly regularly, but don’t speak up and engage. A row further back, you’ll find people who wandered in, maybe this is their first conference. Your goal then becomes to move the outer groups closer in, one ring at a time. People have to get comfortable and familiar with the environment. As the inner circles begin to engage each other, the chance of success greatly improves. iconsinmed.org army.mil shaffallahcenter.org Smith with students at Don Bosco University in El Salvador

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ook familiar? He should. Robert Patrick’s roles include Col. Tom Ryan in The Unit, John Doggett in The Ex-Files and the T-1000 in Terminator 2: Judgment Day. When he’s not in front of the camera, he’s often on his motorcycle, zooming around the country as a part of the Boozefighters, a nonprofit organization that raises money to help vets, children and the poor. Recently Patrick traveled to Iraq to offer encouragement to our troops. Here the actor talks to ABILITY Magazine about those adventures, as well as what happens when he gets pulled over by the cops, why he stopped drinking and how he chose acting: I became an actor because it was the only thing I was interested in. When I went deep into my soul and asked myself what is it that I wanted to do with my life, acting was the answer I got. I like playing other people. That’s my calling. So I sat in on a few drama classes in college, did a few plays in school, and drove to Hollywood and basically said, “I’m an actor. Now what do I have to do? How do I get started?”

I’ve done a lot of movies, but the biggest one was Terminator 2: Judgment Day, playing the T1000, opposite Schwarzenegger’s character. He’s about my size. I’m 6 feet, 208 pounds. I think he’s about 6 foot 1. When we were making the movie he was about 195 pounds. I just saw Arnold recently at the funeral of his dear friend, Stan Weston, who created the look of The Terminator and all the make-up special effects for Jurassic Park. It was great to see Arnold, but sad to see him under those circumstances. I was 30 years old when we made The Terminator in 1990. I’ve had huge life experiences since I made that movie, which is locked in time. I look at it and go, “Oh, my God, look how young and skinny I was!” I was skinny because I was broke. I was also on drugs at the time, and I drank. I actually had a serious drug and alcohol problem. I no longer drink or take drugs and I’ve been sober for 11 years. A big part of my life now is riding motorcycles. I belong to a motorcycle club called the Boozefighters. Steve O is the vice president of Chapter 101, and I am the president. There’s a great story about how this club came about: It was established in 1946 by veterans who came back from World War II. Many of them had Post Traumatic Stress Disorder, as we call it today, and didn’t feel like they fit in with normal society. Boozefighter is a name for somebody who’s trying to conquer his habit of drinking. They got the name because they drank and they fought, and somebody in a bar said, “You know, you guys should call your club the Boozefighters, because all you do is drink and fight.” And they decided to call it that. They liked to ride their motorcycles and raise hell. It was all fairly innocent: Have a good time, continue the

sense of brotherhood, duty and honor—values they brought back with them from the war. I’m sure they just had a lot of adrenalin and steam to blow off as they came to grips with returning home and getting back into society. So they formed these motorcycle clubs, and Boozefighters is one of many formed at the time. But Boozefighters is historic, one of the earliest ones, organized around the same time as the Gallopin’ Gooses, the Top Hatters and the 13 Rebels. The Boozefighters started in Los Angeles in 1947, two years before the Hell’s Angels. One Fourth of July at the AMA Pro Races, one of our founders actually drove into one of the races that was in progress and rode over a fence, causing havoc. Then club members basically took over the main street of the town, Hollister, CA, and raised a little hell. When Life magazine covered the event, they staged a couple photographs of drunken vets, home from the war, terrorizing the common folks. They played up the drama, creating this image of the outlaw biker who was gonna come and terrorize your town, so lock up your women and all that kind of stuff. The Gallopin’ Gooses were there, the Boozefighters were there, the Top Hatters, and a lot of these older clubs. They were all pretty much the same, all formed by guys coming home from the war. But the Boozefighters got connected to the myth more so than the others.

MOTORCYCLES TO MOVIES That incident in Hollister (near Monterey), later became the inspiration for the movie The Wild One, made in 1953 with Marlon Brando. The producers recruited our leader, “Wino” Willie Forkner, to be a technical advisor. I think the big thing that he’s credited for is coming up with the name Black Rebel motorcycle club. He took the 13 and combined the 1 and the 3 to make a “B” and created the Black Rebel motorcycle club, a fictional club in the movie, which was the one that belonged to Brando’s character. The other club leader in the film was Lee Marvin, who actually followed Wino around and based his portrayal on him. The interesting thing was that Lee Marvin was actually a returning vet himself. He was a Marine who served in Iwo Jima, and really understood what was going on in those guys’ heads. His motorcycle club was called the Beetles. So the movie comes out and over in Liverpool there are four guys who have a little band. The movie makes a big impression on them, and they actually liked the name the Beetles and decided to change the name of their band. So the Beatles got their name, more or less, from an American motorcycle club. I go off to make a movie in New Zealand called Bridge to Terabithia. While I’m down there, I get a call from Steve O and another guy saying, “Hey, we want to do ABILITY 41

this cross-country trip around America at such-and-such a time.” I say, “OK, cool.” When I get back, I do We Are Marshall, and then we put this trip together and rode across America. I had read the book about the Boozefighters, The Original Wild Ones: The Boozefighters, written by Bill Hayes, and they seemed like great guys. The book got me wondering about what happened to them. Well, as we’re making our way back across America, we get

pulled over for speeding in Yellowstone. The cop starts talking to us and I pull my helmet off and, fortunately for us, he recognizes me. So, he let’s us go. When I get pulled over, police often say, “Hey, I didn’t know it was you.” That kind of thing. “Of course you didn’t, I was wearing a full-face helmet. Like you could see through it?” But I say, “Yeah, man, it’s me. How you doin’?” Some say, “Oh, well, I’m sorry.” I’m thinking, What? You’re sorry for doing your job? We were speeding. I don’t blame you. Then they say, “I’m going to let you go,” and I think: OK, I appreciate that. That’s one of the perks. At the same time, if you wear the patch and you belong in a club, police treat those persons a bit differently when they pull them over. They think you’re up to no good. It’s not fair, that sort of discrimination against motorcyclists and motorcycle clubs. We’re not up to no good, we just happen to be brothers and want to ride together. We take care of each other. We don’t want to do anybody any harm. We don’t want to cause any trouble or anything like that. In Yellowstone, after the police recognized me and let us go, I said to the dudes, “Hey, while we’re here, why don’t we go grab something to eat?” We go in and we’re eating in this diner, and in walks a Boozefighter. I’d never seen one in my life. The guy was 6 foot 4, about 270 pounds. Huge white beard, white hair, looked like frickin’ Santa Claus on steroids. I just went like, “Jesus Christ, that guy’s got to be one of the original Boozefighters.” He sat down across the counter from us. He looked at me and I looked at him, and I said, “I know who you are,” and he said, “I know who you are.” We started talking, and I said, “You’ve got to be one of the original Boozefighters.” He said, “Nah, I’m not that old.”

A JOURNEY BEGINS

Patrick leads various bike rides to benefit a number of charities. 42

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So we kept talking. We’re telling road stories. He was out camping, riding around America. I asked him, “How come I’ve never seen a Boozefighter in Los Angeles? That’s where it started back in ‘46.”

The ABILITY House program, working with, ABILITY Magazine and home building organizations reaches out to volunteers with disabilities to help build accessible homes for low-income families with disabilities. We are seeking corporations, foundations and churches to sponsor more homes. We can build in nearly 100 countries. Please contact us for more information. info@abilityawareness.org www.abilityawareness.org He said, “Well, that’s a long story, but are you interested?” I said to him, “I actually think I could be a Boozefighter. I’d like to do that. How do I do it?” That sent me on my journey. I spent the next year prospecting and riding around, getting to know people, introducing myself to the motorcycle community and the power clubs. I heard there’s something like 300 clubs in Los Angeles. It’s been a fascinating experience for me, because I was never in the military.The sense of brotherhood, honor and duty that I have gotten from it and the fact that I know I’ve got brothers backing me up is a neat feeling. And they’re all over the country. It’s an international motorcycle club, and I really had no idea. I’d never been a part of something like this. We’ve turned our chapter into a nonprofit organization and we’re out there visibly trying to do good deeds in the community to let people know that although we may ride around on loud machines and wear a three-piece patch, we want to be a positive part of the community as well. We raise money and distribute it to disabled vets, participate in Blaze of Glory. We’ve done Children’s Hospital runs, Skid Row toy runs, Foundations for Families, Homes for Heroes, and other important charitable, community events.

As an actor, I have a certain profile. I’ve been fortunate to have done the Love Ride as honorary grand marshal with Jay Leno for 18 years. But the community of bikers and motorcycle clubs has given me more of an opportunity to really get out there, participate and help. I just came back from Baghdad, where I took my club patches—the colors I wear on my back. When I wore those, a lot of guys came up to me and talked to me about the Boozefighters. Some guys knew who we were, some guys were in other clubs. It’s a big, cool brotherhood. There are steps to becoming a full patch-holder. You’ve got to prove to yourself and the brothers that you’re worthy of being called a brother. It’s very much like the military in that sense. You’re given different challenges at different stages. It’s private between each and every club and you have to earn it. I’ll be going back to Iraq soon. In May, I brought members of the Boozefighters on a Poker Run ride to raise money for the Orange County Habitat for Humanity’s Homes for Heroes project. From there, I left and rode on to the Vietnam War Memorial in Washington DC. The Memorial Day ride is called “Run ABILITY 43

His role on the TV series, The Unit, is one of many military roles Robert Patrick has played. Insert below: They raise more money than hell, and boy do they get around.

for the Wall,” and we all go down and pay tribute to the Vietnam vets, the memorial itself and the country. The ride gives you a great opportunity to pay your respects to everybody in the military and let them know how much they mean to you. The other cool thing I did in to DC was go to Walter Reed, which blew my mind. It was one of the hardest things I’ve ever done, and yet one of the most rewarding, to meet young men and women who have been disabled either by losing a limb, losing part of their mental capabilities, their hearing, their sight. It was just unbelievable, the sacrifice that these youngsters made to our country to protect our freedoms. I just admire the hell out of them. My grandfather, Robert Samuel Patrick, was a lieutenant colonel who fought in World Wars I and II and in Korea. He was still active in Vietnam. He was a Bronze Star winner. He died at Fort Bragg, NC, from stomach cancer and is buried in a military cemetery in Virginia. I knew him up until I was five. One of the earliest memories I have is of being in Fort Bragg with him. That’s where the military connection is. Plus, I’m also playing a colonel in the U.S. Army on CBS’s The Unit. We’re filming right now. I left from that ride with my good friend New York Mike, a Vietnam vet who owns a San Diego Harley dealership. He invited me to ride with him. We were joined by a third person, Ugly Rusty of the Ugly Motorcycle Club. Willie G. Davidson, grandson of the one of the original founders of Harley Davidson is a member of the Ugly Motorcycle Club. So Rusty, Mike and I left and rode all the way to Flagstaff, AZ, together. On most bike rides I can go around 100 miles, after that I start looking for a gas station. I get off to stretch my legs, drink a Red Bull or have a coffee or something to eat, take a whiz. After filling up, I head back out for another 100-mile stretch. Our guys are all about trying to figure out how to raise money for disabled vets and how to bring recognition to them. I’ve talked to the City of Los Angeles about putting on a memorial concert to get people to make donations for these wounded warriors. I’m going to do the Habitat ride next year as well. We’re going to try to make it bigger and better. habitatoc.org

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LD SCHOOL: People with disabilities are institutionalized and written off. NEW SCHOOL: People with disabilities are recognized as untapped talent and hired by forward-thinking employers. In this, Part I of a two part interview, Assistant Labor Secretary Neil Romano talks to ABILITY Magazine about the coming revolution in the American workforce: People with disabilities are the next great wave of diversity in the United States, and they are about to move forward. The Office of Disability Employment Policy (ODEP) has been talking about that, and I think it’s starting to get some traction. Companies are beginning to realize that people with disabilities have a lot to offer, and it’s time that they take a good, long look at how to hire them, which makes perfect sense to me. I never assign malevolence to anything that I’ve seen that’s been wrong in the arena of disability. I think sometimes that people try to build this hedge of protection around people who have disabilities, and sometimes it can be so tall that it becomes a form of imprisonment. Perhaps they just don’t believe in people with disabilities. Sometimes that hits close to home. Here I am, 54 years old, and when I get the call from the White House that I’m going to be nominated for this job, I phone my 84-yearold mother in Brooklyn and say, “Mom, the President has

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asked me to be the next assistant secretary of labor for disability employment policy.” She gets real quiet, and whispers, “Neil, does he know that you can’t spell?” Which to me was hysterical. It said everything that I was trying to illustrate, and everything that I’m about. People have tended historically to look at disability as the opposite of ability. We focus so much on what people can’t do that we don’t focus on what they can do. Now we’re going after businesses and saying, “You know what? Actually, this group can do a great deal.” So we’ve started to turn the corner on that, and we’re working very hard. Things have changed dramatically in the last 20 years. People with disabilities are now better educated, and expect more from their educations. They’re saying, “We want to work more.” America is at a very good point in history, because companies need more skilled workers and people with disabilities now have better education, better preparedness and higher expectations. These factors converging are good for people with disabilities and good for the country. Technology is part of it: It gives us the opportunity to have computers and systems that can level the playing field. I tell people all the time that I owned a company where, for years, I had people do my typing because of my dyslexia. I had people read and answer my email for me, because my greatest fear was that I would be perceived as someone who wasn’t smart. My life changed

the day that I discovered spell check. When I sold my business and started working independently, I could sit and write without fear of how people would perceive my written business materials. At the time, I did cause-oriented marketing for both companies and government. The assignments were health-care related. I’d always had a tremendous desire to get into the whole issue of employment for people with disabilities. It was partly because, for many years, I never got a job that I applied for. If I went out for a PR position 25 or 30 years ago, the first thing they would do is sit me down in front of an IBM Selectric typewriter and say, “Take this test.” When you have dyslexia, that’s probably the scariest thing, second only to being asked to read in public. So there I was, passionate about public relations and marketing, but incapable of taking the test that I needed to get into the field.

FROM DYSLEXIC TO ENTREPRENEUR So essentially what happened is that I spent the better part of my life either getting jobs that I was recommended for, or jobs that I didn’t have to take a test for. Finally, I got into marketing and public relations by starting my own company. A lot of people with dyslexia in America become entrepreneurs for that very same reason. We can do things; we just have to figure out how to make up for the things we can’t do. Generally, how we do that is we start a business and hire other people to do those things. I had a meeting with a CEO of a major corporation about a year ago. I went up to this guy’s company, and he rolled out the red carpet for me. He put out a little “Welcome Neil Romano” sign in the front of the lobby and invited lots of people. When I got back home, I wrote an email to this guy, which I thought ended with “Thank you for the warm reception.” I get an email back almost immediately that says, “Worm?” to which I responded, “Yes, worm!” I had no idea what was going on, until my wife read my email and says, “You thanked the gentleman for a worm reception!” (laughs) So I then had to write him a note and say, “Sorry, my spell check didn’t catch that one!” I remember sitting in the New York City public library for days, sending out hundreds of resumes, finding out that I had made thousands of spelling errors on them, and not getting the job. It’s the kind of thing that can make you beat yourself up. But I got an invaluable lesson from my daughter, who is 16 now, and wanted to bring home a friend. I think she was only eight or nine at the time. So we said, “Sure, bring your friend home.” She had been talking about this girl for some time. They played outside, they played on the monkey bars, they ate together. Finally this child comes over for a visit, and she has cerebral palsy, rather serious CP. When the little girl left, I turned to my daughter at dinner and casually said, “You didn’t mention that she has CP.” ABILITY 47

work next to Bob, I think, Why shouldn’t there be curb cuts? He’s got to get to work. I want him there to help me get the work done. And then after work, he needs to get home to his family without encountering obstacles. A CEO said to me recently, “Before I started hiring people with disabilities, I’d see someone on the bus who was visually impaired or someone with CP and think, Poor guy, poor gal. Bad hand, bad deal. Now I see a person with a disability and all I think is, Gee, I wonder where that person works? I wonder what kind of job they have? It dawned on him that his view had changed because he saw people working. And you see the potential for events to cascade from that. I mean, if a person can work and wants to work, then that person should be educated properly and have adequate transportation— the same transportation that I get. That person should have the same opportunity for housing. All those things suddenly become obvious.

‘WHAT DO YOU DO?’

Assistant Labor Secretary Neil Romano

And my daughter looked at me as if to say, Why should I mention that? I couldn’t help but think, Boy, is that the right attitude. I felt something burn right through my soul at that moment. I just related that story again recently, and when the person wanted to write about it, I suggested they talk to my daughter, but she absolutely did not want to expose her friend to that at all. She said, “I don’t even want to have that conversation, Dad.” They’re still best friends today. It’s just one of those things. The experience is terribly powerful for me about how kids think as children, and how that often changes when they get to be adults. When you see a person with a disability standing next to you, doing the same job that you’re doing, that person suddenly doesn’t seem disabled. They’re just the person next to you doing the work. I did a survey with my foundation a number of years ago, which showed that somewhere near 80 percent of everyone who’s ever worked with a person with a disability, said they performed as well or better than anyone else. Then there’s the whole issue of people saying that people with disabilities on the job no longer have a disability. But if Bob is blind and is accommodated at work, and then he can’t use public transportation on the way home, he suddenly becomes blind again. If he’s in a wheelchair and there’s no curb cut, then he is at a disadvantage and has a disability. That’s why I always say that work is the engine of social change, because if I 48

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For instance, if I go to the school board meeting and we’re talking about more money for special education classes, and I have a guy who’s working with me, and I know that special ed would help people like him get a job, suddenly that’s not something that I consider unnecessary any more. His education is as important as anybody else’s. But if I’m walking around oblivious, and I don’t believe that people with disabilities can work, then I don’t understand why they need anything. That’s why I focus so hard on work and work preparedness. Because in America the second thing that we ask each other, after our names, is ‘What do you do?’ Work is essential to the fabric of a human being. It gives us the opportunity to feel a sense of purpose, to take care of ourselves, to take care of loved ones. It gives us the opportunity for independence. Finding work is essential to the healing process; in a lot of cases, it helps people get stronger. You find that people with disabilities who work tend to get a little bit better. I have a brother who is a Vietnam veteran and a quadriplegic. He has a wonderful wife and a great family. He says to me all the time, “Neil, I have no regrets about my life. I have no regrets about my service. But I will tell you, I wish I had a job. I wish I felt productive.” He says the worst days are when he’s in a room and hears everybody introducing each other, and they ask your name and then they say, ‘What do you do?’ “No one ever asks me what I do,” my brother says. “They make an assumption that I don’t do anything, because I have a disability.” That’s the most painful thing he goes through. He’s one of those people who’s struggled to get work throughout his whole life. You feel good about yourself when you feel good about your work. The way we show love is by being able to do for others. You can say you love someone, but not

until you do for them does it register. When I bring my wife flowers, do something nice for her, contribute to her as a human being, she knows how I really feel about her. It’s taking it a step past emotional love; work does that for us. It gives us the opportunity to be part of something bigger than ourselves. It takes us out of ourselves, commits us to others, as well as to bigger ideals. What else is there, really?

NEW PROGRAM FOR PTSD We recently announced a program out of ODEP called America’s Heroes at Work. We’re very, very excited about it. The program addresses Post-Traumatic Stress Disorder and traumatic brain injury for veterans returning home. About one in five veterans returning home is going to have one of these issues. That’s somewhere around 200,000 men and women. Fortunately, about 80 percent of those injuries can be reasonably mitigated in a short period of time, if employers know about it, and if they understand the problems and symptoms. So we have developed what I consider to be an excellent website that helps employers understand what the problems are, how to address them, and simple things that could be done to alleviate them. It’s a great program because we got as much good information on this as we could by working in conjunction with the Veteran’s Training Administration, the Department of Labor, the

Department of Health and Human Services and the Veterans Administration. The website can help you retain a great employee who may be going through a difficult time. Within a year to 13 months, you will have an eight in 10 chance that that employee’s situation will be better. Once again, going back to my own brother’s time, when these fellows came back from Vietnam, we didn’t know what was wrong with some of them. My brother had scads of jobs in his first year, he just couldn’t hold them. Now we know much more about PTSD, and its symptoms: losing one’s balance, headaches, problems with loud noises. If employers knew that back then, and there was a source of information comparable to this website, my brother probably would have been able to maintain a job. He later had other things that eventually affected his health, but there would have been a period of time when he was physically able to have worked for while, though I think he is still may be able. One thing that I’m most pleased about in having the opportunity to work on this with ODEP and vets, is that we’re addressing an area that a lot of people are afraid to take on. Any time you go into anything dealing with the mind, it’s more difficult for people to understand. There’s fear and concern, even though there shouldn’t be, because those are things that can be taken care of. ABILITY 49

This program obviously relates to veterans, but there are employers and employees such as first responders— police, fire, EMS—who grapple with PTSD every day. I can’t tell you how many people have come up to me from those communities and said, “We’re so glad somebody has stepped up and talked about this issue.” Because when you have a firefighter or a policeman who sees something really tragic, trust me, they have these problems. They may be overlooked, but this website gives them a resource. We’ve already reached out to some of those organizations, and they’re very excited about this resource.

DON’T CALL IT ACCOMMODATION If you have dyslexia like I do, you know that fluorescent lights are not your friend. I can see them flash. People with PTSD and some forms of traumatic brain disorder have the same problem. It makes them incapable of concentrating. We know that you can turn the fluorescents off, put in some incandescent lighting, and get rid of a lot of that right off the bat. If you have a person who has PTSD and they’re having a problem concentrating, put them in an area of the office that’s a little quieter. This doesn’t require a big fix. I have to tell you, though, I don’t like the word accommodation. It sounds like doing someone a favor. If someone walks into my office who doesn’t have a quote “disability” and says, “You know, I don’t use a Mac. I use a PC,” and I have to get him a PC and pay $3,000

for that, that could be considered an accommodation. But if my job is to make sure that everyone is given an opportunity to do their best, that’s not an accommodation. And if I have to lift up an employee’s desk, change the light bulbs, or otherwise make the office accessible, that is nothing more than productivity enhancement. So from my point of view, a good businessman is going to give you the tools and the environment to do your job. America has grown every time we’ve allowed another diverse group to be fully incorporated into society. It seems like every couple of generations or so we manage to let in another group of marginalized Americans. My goodness, what takes us so long? At a recent conference, I said to attendees: “When you think of how you would incorporate people with disabilities, I want you to stop for a moment and remove all the people from your office who, at one time or another, were considered, ‘unhireable.’ Start with women, move on to African Americans, don’t forget the turn of the century when all those Italians and Irish came, and we told them not to apply. And then let’s move onto Hispanics... After you take all those people away, you know what you’ll have? An empty office. Where would we be without those Americans today? From my point of view, people with disabilities are that next great wave. dol.gov/odep americasheroesatwork.gov

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ctress Meredith Eaton has been in a number of shows with roots in the law: She started out on Family Law, and recently has been featured on Boston Legal. But her professional roots are in psychology, where she worked as a therapist for many years. Some of those were with United Cerebral Palsy, which

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her grandmother, Nina Eaton, helped to found in in the 1940’s after her son—Meredith’s father—was born with the condition. Today, UCP affiliates serve more than 170,000 children and adults with disabilities, and their families, every day. Here Eaton talks with ABILITY Magazine about the unique path her life has taken so far.

ABILITY Magazine: Your background is in clinical psychology. Eaton: I worked for many, many years in the field, often with people with physical disabilities. That was in New York when I was a therapist for United Cerebral Palsy. I was always interested in working with people with disabilities, and in high school I worked with people who had Down syndrome. That was for an agency called AHRC, Association for the Help of Retarded Children. Then I went to college, and throughout college I volunteered for AHRC. After that, I was hired to work at United Cerebral Palsy as a program administrator and I did some therapy. When I moved to California, I got my first series, which is what brought me here. Paul Haggis, who’s now a big movie guy, cast me as a lawyer in Family Law. When that series ended, I thought that I would be going on more auditions and booking more jobs, but everything just came to a screeching halt. So I had to figure out a way to make money, and I went back to my roots as a therapist in a locked psychiatric unit, working with people who were criminally insane. I did that for a yearand-a-half, and I had to leave, because it just was not safe. I had been assaulted several times, and I said, “I can’t do this any more.” I did a little bit of acting—some guest spots here and there. I got a job working as a therapist doing individual and group crisis intervention and family therapy. I did that for two years. I left to do Boston Legal. So my psychology career has been interwoven into my acting career, and it’s my safety net and fallback. But again, it’s not where my heart is. I was dealing with every type of mental illness: depression, bipolar disorder, schizophrenia, schizo-affective disorder--you name it. I was exposed to every type of mental illness. I was trained to do that. Although I haven’t been practicing for about three years now, so I can focus on acting.

to childhood. Whereas psychology is much more hereand-now oriented. You focus on a problem you can fix in 12 sessions. As opposed to psychoanalysis, which can go on for years and years. AM: So the psychoanalysis goes back to the date of birth, where psychologists go back to last Tuesday? Eaton: Exactly. Literally, what brings you here? Let’s troubleshoot how we can fix it. And it’s much more contained. The sessions are pretty much spelled out by the insurance company. AM: As a psychologist you had something of a safety net. But as an actor you don’t. How do you feel about that? Eaton: My first and foremost love is acting, so I’m excited about the possibilities of where my career is going to take me. I’m realistic about the limitations that I continue to face because of my (short) stature, and because of a lack of willingness to explore non-traditional casting. But for now, I want to focus on acting. AM: Your stature has grown on Boston Legal? Eaton: My stature? I’m not any taller, if that’s what you mean! (laughs) Do you mean my notoriety has grown? AM: (laughs) Yes. Eaton: Oh, OK. (laughs) Yes, it definitely has because the show is so popular, and everywhere that I go, people respond to me and acknowledge my work. It’s wonderful. So certainly, publicly, I’ve definitely seen a difference. But still, industrywise, not that much has changed. My activity level, in terms of getting interviews, has not really changed. AM: What’s going on with Boston Legal?

AM: What’s the difference between a psychoanalyst and a psychologist?

Eaton: This is our fifth and last season. I’m in the premiere episode in September

Eaton: My mom is a psychoanalyst. They have a different school of thought. A lot of psychoanalysts practice classical psychoanalysis. They follow a Freudian model. It’s a much more strict, regimented therapy, where you see the patient three times a week. It’s very free-flowing, analytic thoughts. A psychologist, on the other hand, problem solves and helps you to get through a certain crisis in your life, which is quicker.

AM: Tell me more about your connection with UCP (United Cerebral Palsy)

AM: So when someone says they’re a psychologist, they don’t typically do psychoanalysis? Eaton: You could, but it’s very hard to do psychoanalysis in this day and age, because insurance companies won’t pay for it; they consider it a luxury. You’re really getting to the primary root of all problems. You go back

Eaton: My grandmother, Nina Eaton, founded United Cerebral Palsy. At the time that my father was born with it, there were no resources for people with the condition. So my grandmother and grandfather, who lived in Brooklyn, tried to reach out for some type of resource or support, and people just told them to institutionalize my father. There was no help, no hope. But my grandmother, who’s very headstrong and assertive, didn’t like that answer, so she founded the organization that would become UCP in the basement of a firehouse in Brooklyn. AM: Did the firehouse know she was down there? ABILITY 53

Eaton: (laughs) Yes, they did. It started as a parent-support group. And then it evolved into what it is today. She has many, many, many buildings and structures named after her. She’s still alive. In fact, she recently had her 93rd birthday, and I went to New York to celebrate with her.

was where he’d put all his energy. As a little boy he’d go to baseball games and follow sports. My grandmother was very consumed with UCP, and I think my dad wanted to identify with other things besides his cerebral palsy, so he developed other hobbies. AM: Did he participate in sports as well?

AM: Oh, wow, how cool is that! How is she doing? Eaton: She’s had some cardiac issues this year, but she’s as sharp as a tack. I just hope I inherit her genes. AM: She had a shark attack? Eaton: (laughs) You’re a comedian—or at least you try to be. She’s had some cardiac issues, so this year she’s taken a step back. At 93, though, she’s still functioning. She’s doing better than a lot of people her age. I’m happy that she’s OK. But what is even more remarkable about her story is that her son, my father, the one people told my grandmother to institutionalize, not only retired as a governor-appointed administrative law judge, but he’s probably the most brilliant man I know. The poetic justice of it all is that my father went on to thrive. I’m very proud of both my parents, especially when you think about the lack of knowledge about people with disabilities back then and how quickly they turned to just pushing them into institutions.

AM: (laughs)

AM: What CP symptoms does your father have?

AM: I thought you were going to say as a basketball.

Eaton: It’s orthopedic. His whole life he walked with forearm crutches, and then eventually he stopped walking. It just became too hard for him. He doesn’t have much use of his left hand, but his speech is totally intact. He doesn’t have any speech impairment or cognitive deficiencies.

Eaton: No. (laughs) Definitely as some kind of sports player.

AM: Was he right-handed to begin with?

Eaton: Of course the support staff all knew; however when I applied for a job, I applied just like everybody else. I sent my resume into the main office. I didn’t have my grandmother make any phone calls. Obviously, they probably knew who I was from my last name. Eaton has carried a huge impact in the area of cerebral palsy and people with physical challenges, but the people I was helping didn’t know. To them it didn’t matter.

Eaton: Yeah. AM: What does your father think about the work you’re doing? Eaton: The first recurring role I ever had on TV was on Family Law. I played a lawyer. He was thrilled. I would show clips to him, and the judge in him would say, “That’s not correct.” He would be very technical. He’d almost be like a technical advisor. And he’d get frustrated, because he’s a huge law-show fan. He watches every law show on television, and so he was really thrilled. Then when I was cast on Boston Legal, it was even more exciting. He’s also a big fan of that show. AM: Did your father ever work with UCP? Eaton: No. But when he was a little boy, he was the first “poster child” for UCP. My dad’s a huge sports fanatic; he had a baseball signed by Jackie Robinson, and that 54

Eaton: Though he couldn’t play, he would coach. That’s the closest he could get to the game. In fact, my dad’s really something. His favorite song, which he’s instructed me to play at his funeral, is “Put me in, Coach!” He made me promise.

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Eaton: When he hears that song and he just hops up and down in his wheelchair. He loves that. He was just talking to me about his love of sports, and how he was really sad to hear that his college roommate just passed away. He went to Adelphi University on Long Island. His roommate was an African-American basketball player. One night, the two of them broke into the gym. It was pitch black, and the roommate put the lights on, took my dad out of his wheelchair and lifted him up so that he could dunk a basketball. It was one of the best moments of my father’s life. My dad will come back as a basketball or baseball player.

AM: When you were at UCP, did people know it wouldn’t have existed if your grandmother hadn’t been proactive?

AM: ABILITY has a partnership with UCP. Eaton: Really! AM: If you go to their website, you’ll see their announcement. Eaton: If you go to the UCP national conference, they have the Nina Eaton Awards, they have the Founder Award, an award presented in her name. If you’ve ever been to a national conference and my grandmother is there, she chairs the awards show. The reverence she receives is just—you cannot even open her hotel room

door without being flooded with flowers. She’s an amazing woman who deserves the recognition. It was my grandmother and my grandfather and another couple, the Hausmans. I think if you interviewed the higherups at UCP, you would get some incredible feedback about her, because everybody—you know the show Everybody Loves Raymond? Everybody loves Nina Eaton. AM: It’s cool that you worked for them and went that route—through the front door rather than the side or back door. So what are you doing now? Eaton: We recently wrapped the season premiere episode of Boston Legal, and I’m hoping to do more episodes. I’m also trying to get out on auditions for other film and television roles. AM: How do you do that? Eaton: I have an agent and a manager, and they’re actively seeking work for me. But it’s difficult. It’s difficult for anybody in this business. Unless you have really made the A-list, it’s not easy to be seen for roles. But you multiply that times 10 when you’re in my situation. It doesn’t matter that I’ve had two recurring roles in series. It doesn’t matter that I’ve proven I can act with the best of ‘em. It’s always the height thing that gets in the way. My mom’s an accomplished psychoanalyst and a little person. My dad is an accomplished judge with cerebral palsy. They’ve been incredible role models. They’re intelligent, intellectual, accomplished people, who always taught me to have pride, be a go-getter and fight for my rights, which I do on an daily basis. I’m not trying to stand on a soapbox, but I am trying to make a point. I refuse to take roles that perpetuate negative stereotypes about people with dwarfism. I just won’t do it. I’d rather not work than put that out there. And I know there are many little people who do choose to do those kinds of roles. That’s their choice. But when they do that, they also make it a lot harder for little people who are trying to be seen as just people, and it’s very, very frustrating to me. If I take five steps forward, their choice brings me four steps back, because it says to a casting director or a writer, “It’s OK to write these sophomoric, idiotic roles, because somebody is gonna take them.” It’s a real challenge.

worked in the lockdown facility, I imagined there could be a whole show about a psychologist who works in that environment and the different scenarios and personalities. It doesn’t have to be that particular scenario. But whenever you’re working with psychologists, there are so many different story lines that come out. Eaton: You know, it’s funny that you say that, because I wrote something about that called A Little Therapy, and I’ve tried to pitch it for years and years. It’s based on my life working in the unit. People think it’s a great idea, but at the end of the day, nothing happens. But I have to continue to push, because that’s the only way anything is going to happen. AM: Maybe you could find another writer who has a different type of edge to that person and have them massage what you’ve written, pump it up a little bit and give it more whatever. Eaton: That’s a good idea. AM: I used to publish National Lampoon magazine, and we had some writers that in person were dead as a doornail. But you’d give them something to write and they’d hand it to you, and you’d say, “Wow!” So if you find a person like that who has another way of looking at life, and you already have the basics, that might do the trick. Eaton: I might explore that. AM: What are your hobbies? Eaton: I love to read. I’m a huge animal lover. I have two incredible Pomeranians, Moby and Mason, whom I adore. We go for walks. I write. I travel. AM: What do you write about? Eaton: I write pilots and episode concepts, that kind of thing. AM: Your family is where? Eaton: In New York. AM: You’re the only one here? Eaton: Unfortunately.

AM: Have you thought about writing scripts yourself? AM: How often do you go back? Eaton: I have and then I try to pitch it, and a lot of people don’t get it, or they think it’s a great idea but nothing happens. It’s really, really hard, when you have shows on the air like I Love Money and other reality crap, to get anybody to pay attention to anything that’s not bubble gum for the brain. AM: When you described that year and a half that you

Eaton: Typically, every two months. AM: That’s not too bad. Which part of New York? Eaton: Long Island. AM: Did you say Lonk Island? ABILITY 55

Eaton: I try to say “Long.” It may have come out Lonk because I was just home yesterday. It takes a while to shed the accent. It’s like a contagious disease.

AM: The way he rode that motorcycle in Wild Hogs, he had me at the first kick. Eaton: (laughs)

AM: Other than UCP, what other organizations do you support? Eaton: Media Access. I’ve started to volunteer with animal shelters, and I attended the Genesis Awards , which has become an interest of mine. My really good friend Pauley Perrette, who’s on NCIS, is very involved in animal rescue, and I’m getting involved with that more. That’s pretty much it with organizations.

Eaton: He does. Another person who’s like that is Robert David Hall. He is another actor who I adore. I know him personally, and he’s just a delicious teddy bear.

AM: Do you know William Macy.

AM: Delicious?

Eaton: Oh, he’s very active in UCP. I admire him. He presented my grandmother with an award; I have it on video.

Eaton: (laughs) Yeah. He is also on a successful series. He’s as busy as can be, but he is so involved. He sits on the SAG Board of Performers with Disabilities. I don’t need to tell you what he does. You know. I know you guys did an interview with him, and he was on the cover, rightfully so. This is a man who doesn’t just sit back. He is an advocate. I think he’s fantastic. It’s people like that who inspire me to continue to fight for respect and dignity. I have been known to get involved with writers of shows to have them change things. Sometimes it’s to the dismay of my representation; they think I’m a little nutty, but you know what? At the end of the day it’s me, on screen, portraying a character, and that character needs to be respectable.

AM: He’s got a great sense of humor and is very talented. One year, he wrote and performed a song at Cal State University, Northridge’s annual technology conference for people with disabilities. The song was about augmentative devices, and it was so funny! Eaton: I would love to work with him one day. AM: Maybe he’ll read this. Note to Bill: Ask Meredith to read for your next project. Eaton: I have always been an admirer of his. I really think he’s a brilliant actor. I love his work. He did a movie years ago, a TV movie, where he played a doorto-door salesman. AM: That’s why we interviewed him. Eaton: I don’t remember what the name of that movie was. AM: It was called Door to Door. Eaton: I was so incredibly moved by that. For days I was haunted by that performance. AM: As you know, the person he was playing, Bill Porter, has CP. Eaton: Yes. I was so moved that I looked up the back story. I wanted to know everything I could about that person. It was a really authentic performance. Typically I get angry when performers with disabilities get passed over without an opportunity to audition. So when they cast an actor who’s not disabled in a role where the character is disabled, it makes me upset. But in this particular case, I was thrilled. There could not have been a more appropriate person to play that role, especially because of his involvement in UCP.

AM: He’s great. And he puts the time into it. A lot of celebrities will throw their name out there and their connections, but he really puts in time and energy.

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s a soldier in Iraq five years ago, J.R. Martinez’s world blew apart when the vehicle he was driving hit a land mine. The corporal, who is now retired, spent more than two years in the hospital, undergoing dozens of operations to put his body—and life— back together. Now he’s up and running, literally, and wowing crowds around the country as a motivational speaker. He dares to dream big and to find ways to make those dreams come true. Recently Martinez was honored with the Shining Star of Perseverance award, given annually by the WillReturn Council to honor a few good men and women who demonstrate perseverance through disabling illnesses or injury.

Martinez: I was deployed by the Army to Iraq in March 2003. A month later, I was escorting a convoy to the city of Karbala, when my front left tire hit a land mine. I got trapped inside the truck. When I was pulled out, I had been burned over 40 percent of my body, including my head, face, arms, hands and a portion of my legs and back. I was evacuated to a local medic station in Iraq, and then to Landstuhl, Germany, and finally on to Brooke Army Medical Center in San Antonio, TX. It was there that I had 32 surgeries in two-and-a-half years. But if you stick with something, you might be surprised how far you can get. AM: How long have you been in the service?

ABILITY Magazine: Was it a situation where you actually applied for the award, J.R., or did they come to you?

Martinez: I’m actually retired. I joined in September ‘02 and got out in March’06.

Martinez: They came to me. That’s what makes it special. If I had applied and got it, that would have been great, too, but they just called one day and said, “This is who we are, we’ve been trying to find you, you’re getting this award,” which makes it even more special. I do a lot of media, and people find me whether it’s through a newspaper, TV or radio. It’s pretty cool to attract such positive attention.

AM: And prior to that?

AM: That was your high point; tell me about the lowest point—your accident?

Martinez: I plan to do motivational speaking on a wider level, which I believe will increase my opportunities.

Martinez: Prior to that! Whoa, I remember a few birthdays, but not that many! I joined the military right after high school. I’m 24 now. (laughs) AM: Other than public speaking, what are your plans for the next few years?

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Also, I want to write books and ultimately host my own TV show. It would be about something positive, because we tend to get so caught up in the negative that we forget all the good. I think every one of us needs to hear that positive story, and get that positive feedback to motivate us. So filling that role is one of my major goals. There are a lot of different things that I would like to take on, not for the fame or fortune, but to prove to people that anyone can do them. AM: It seems that public speaking comes naturally to you. Did you take any classes? Martinez: No, but I always enjoyed talking to people and being around them. I also had a lot of experience with being the class clown and making myself the center of attention. So when the opportunity to try public speaking presented itself, I went for it. People told me I had a gift, and I said to myself, “You know what? I do.” It’s a blessing. I’m lucky. What can I say?

AM: Other than the burns, are you dealing with any other physical problems? Martinez: No, but the burns are limiting in themselves. They have definitely affected my range of motion. Yet through rehab and surgeries, I’ve been able to gain all my function back, which has been key. People often ask me, “JR, how are you doing?” I say, “You know, if it wasn’t for the scars on my body, you would think that there’s nothing wrong with me, because that’s how good I feel.” I’m running again, working out again. I stay in the sunlight. There are a lot of ways in which I was limited early on. In fact, I was told there was no way I’d be able to do this or that, but here I am, doing those things and more. AM: So other than people’s perceptions of your burns, you don’t have a disability? Martinez: Right.

AM: You’ve done the three most fearful things: Speaking in public, scaling great heights and being a soldier in Iraq.

AM: The Americans with Disabilities Act protects individuals from discrimination in employment, even if there’s only a perception of a disability.

Martinez: You’re right. I was afraid of heights, which I got over in the army, because I had to spend time up in the air, doing jump training. At 18 or 19, I had to step away from my parents and comfort zone and into the uncertainty of military life. I overcame that fear once I got to Iraq. But a fear that some might not realize that I faced was seeing my face and body for the first time after my injury. That was scary. To be able to say, “How am I going to go into public and be accepted again? How am I going to be looked at, to be received?” But I overcame that, too.

Martinez: You know, I had no clue that the ADA was supposed to protect me from discrimination. I know that people with disabilities may be perceived negatively, and yet they may still be perfectly functional. But I didn’t know that there was a law to help. That’s pretty cool. It’s the ADA, right?

The first time I spoke before an audience of thousands of people, I thought: Man, am I gonna wreck this? Then I had to overcome going on TV. There are so many barriers I’ve faced day in and day out. But I have faith, and I’m constantly pushing myself through obstacles. From left to right — Steve Palermo, chairman of the WillReturn Council, Debbie Palermo, wife of Steve Palermo, J.R. Martinez, Shining Star recipient, and John Roberts, interim president and CEO of Assurant Employee Benefits.

AM: Yes, the Americans with Disabilities Act; it was signed in 1990. The ADA contains many sections dealing with accessibility and communications, transportation and employment. Under employment, it spells out how you can’t discriminate, and then it defines what a disability is. It’s the lack of one or more life activities, but it includes people who are perceived to have a disability. So under that clause, a person actually has a defensible case if they can prove that that was the reason they didn’t get the job. Martinez: If they did prove it, is the employer forced to correct the situation? AM: It depends on the facts of the case, your attorney and the court’s ruling. What it does is give you a real tool to work with, which is something that didn’t exist prior to the ADA. Martinez: I think what you said about the ADA should give people hope. I interact with a lot of people who are disabled, and now I can say, “There’s something out there for you. Look into it.” AM: What are you doing to market yourself? Martinez: I actually work with a nonprofit organization

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that helps wounded troops who’ve returned from Iraq and Afghanistan. I’m the national spokesman. That puts me in the public eye quite a bit; I tend to travel nonstop. Through these appearances, I help get a lot of people involved. I’ve been doing other things here and there, which I would file under the category of networking. That’s what it’s all about. Every day I get up and I network. That’s what helps me. AM: Are you still in touch with the people you’ve met who’ve also acquired disabilities in Iraq and Afghanistan? Martinez: Yes. A lot of the people who were wounded over there turned out to be my best friends. It’s amazing to be able to see how they’ve taken what’s happened to them and moved on without looking back. AM: Are you ever going to go back to Iraq? Martinez: I want to go back as a motivational speaker. I’m trying to convince someone to back me, like USO. Would it be that bad to have someone who’s been there/done that come out on the other side and go back to encourage the guys? So far I’ve been unsuccessful in getting someone to buy in, but I’m hoping someone will budge. I want to go back. One of my good friends was talking to Armed Forces Entertainment (AFE), because I do a lot of stuff with country music’s Big & Rich. I’ve also done a lot of stuff with LeAnn Rimes and other musicians in that arena. We’re trying to put together a tour of the musicians we know, and take it over there.” AM: That’s a great idea. Martinez: AFE is aware of what we’re trying to do, and it’s something that they definitely want to look into and possibly move forward with. This summer, we planned a welcome-home event at a Raleigh, NC, Air Force base for about 400 troops. We went for someone who had been wounded in Iraq to be the MC. That way, between acts, the vets could hear great stories from troops who were once there. It kind of motivates them to be able to say, “Wow, that’s one of our guys!” I want to do a documentary. It would be cool if I could go over and film our trip, and then go on to Landstuhl, Germany, and visit the troops there, retracing my steps. That would be emotional for me, to go back and do that. Great American Country (GAC) Television in Nashville just interviewed me. We pitched the idea for them to cover the trip. So we’ll see what comes of it. If they give us the go, man, I definitely want some people to go with me so I can get the ultimate out of it. I believe if I were able to get that TV station, GAC, to say, “We’ll cover it,” then we could go to the USO and say, “You know, this will be fully televised on national television, and USO’s name will be everywhere. But don’t send us with your people, we want to travel with our own.” Steve Cochran sings country music, and he was a marine who was wounded in Iraq. I just ran into him in Nashville recently, and we had a great talk. So I’m thinking to myself, that’s another way to go. He was paralyzed for nine months and was told that he was never going to walk again, and then boom! He’s not only walking, but singing and has—from my understanding—a song pretty high on the charts. So obviously there’s a lot of different ways of marketing this so people raise their eyebrows and say, “Hmm, not a bad idea.”

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t some point in life, most people will experience facial pain. This includes sinus infections, eye irritation, ear aches and tooth aches. Then there are chronic pain syndromes, which afflict certain people over the course of their lives. About four out of every 100,000 people in the US will develop chronic facial pain each year. The most common is Trigeminal Neuralgia (TN). This condition is characterized by sudden episodes of sharp pain, called paroxysms. They typically last a few seconds, but are excruciating. Symptoms can be triggered by the simplest thing, such as touching oneâ&#x20AC;&#x2122;s face, brushing oneâ&#x20AC;&#x2122;s teeth or chewing. The

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pain can be traced to the main sensory nerve to the face, called the Trigeminal nerve. It has three primary branches. The first is the Ophthalmic division because it serves the area around the eye and upper part of the face. The second is the Maxillary division and supplies the area of the cheekbone. And the third is the Mandibular division, serving the area of the lower jaw. TN is more common in people who have Multiple Sclerosis, affecting two percent of patients who have that condition. Also 20 percent of those who experience TN on both sides of the face, which is rare, also have MS. TN affects the right side of the face twice as often as the left, is twice as common in women than in men, and more often causes pain in the cheekbone and jaw area. The most common cause of TN is compression of the nerve by a small blood vessel, where it enters the back of the brain. Tumors can also cause TN, as can Multiple Sclerosis. Several conditions should be ruled out before TN is diagnosed, including shingles, Temporal Arteritis (a tender, swollen artery beneath the skin just in front of the ear), and other diseases of the eye or teeth. Treatment of TN may involve medication, surgery or both. The medication that is generally used is Tegretol (carbamazepine), a seizure medication that works because what is occurring in the nerve is much like a seizure in the brain. While many patients require fairly high daily doses of the medication to get symptoms under control, the drug is relatively inexpensive and side effects are tolerable. However, regular follow up with a doctor is important. Other medications that have proven effective for some patients include Lioresal (baclofen) and Neurontin (gabapentin). Patients who cannot get control of their symptoms often seek relief through neurosurgery. The kind of surgical treatment will depend upon what is causing the symptoms. If it is a tumor, it is usually removed. Another approach is to separate the small artery in the back of the brain from the nerve, a procedure called a Microvascular Decompression or MVD. This is often the best treatment. However, if a patient is too old or ill to have it, has MS (which makes them ineligible for this surgery), or the procedure fails after two or three attempts, there are other options that are less invasive. Unfortunately, they tend to be only temporarily effective and must be repeated after a year or two. These involve placing a needle in the face just under the cheekbone and inserting it into the hole in the underside of the skull, where the Trigeminal nerve exits before it enters the face. Once the needle is properly located with the aid of X-rays, any number of manipulations are used to effectively “deaden” or damage the nerve. This causes numbness on the face, which can be most welcome to those who are plagued by excruciating pain. Manipulations may include: —inserting a small tube (catheter) with a tiny balloon on the end that can be inflated causing high pressure on the nerve —inserting a small electrode that transmits a radio frequency current that damages the nerve —injecting a small amount of a certain alcohol, which also damages the nerve —a precisely focused beam of high-energy radiation called Radiosurgery If you are affected by TN, learn as much about it as you can, and then seek expert advice from a neurologist or a neurosurgeon. Remember to get two opinions to help you make the most informed decision about your health. by Thomas Chappell MD ABILITY 61

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ACROSS 1 Baseball player who later became a public speaker from his wheel chair, Roy ____ 6 "To __, with Love" Sidney Poitier film where he beats race prejudice by character alone 8 Pet snake, sometimes 9 ____ -privileged 10 Brad Pitt film involving a deaf Japanese girl 12 Latest 14 Survive, just 15 Fascinating Japanese game 16 "_____ Kenny" movie which is a biography of an Australian nurse who finds a cure for polio 17 Comedian who used his skills to cheer up patients after battling with cancer himself (2 words) 20 Granted 23 Mark on the skin 24 Promotional effort 25 Medical expert 26 Movie where the jockey is blind on one eye (2 words) 29 Little devil 31 Michael Phelps' nation! 33 Eccentric 35 President, for short 36 Mimic 37 Conquer 39 Aerial observer, for short 40 Exercise class 41 Sally Ride, the astronaut, was born here 42 Compass direction 43 Tom Hanks classic where he overcomes a disability to succeed in life (2 words) 46 Second in a movie series 47 Compete 48 Environmental watchdogs 49 Holly Robinson ___ who created the HollyRod Foundation to fight Parkinson's disease 50 "Mrs Doubtfire" star, Sally who is helping people with osteoporosis

DOWN 1 Actor who played Ron Kovic in "Born on the 4th of July" 2 President who suffered from epilepsy 3 What to do with people who say it can't be done (3 words) 4 European river 5 Meaningless attempts to categorize 6 This well-known actress who plays in "Saving Grace" who has contributed a lot to Media Access, Laura __ (2 words) 7 Good way to eat vegetables 8 Ray Charles, Jose Feliciano and Stevie Wonder were all ___ musicians 11 Alias 13 A long time 18 "Tootsie" star, Terri who has had to battle with MS 19 Save from danger 20 Watch 21 Pat gently 22 Little child 25 Illness that B.B. King, Jack Benny and Andrew Lloyd Webber all had to fight 26 Far stronger than the body 27 President who battled depression and won 28 Nation based on freedom and opportunity for all 30 Handhelds 32 Moral fundamentals 34 "Touched by an Angel" star who became a real-life angel, Roma ___ 38 Florida seaport 40 Psychic phenomenon 43 A dandy 44 Period just before 45 Close friend

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olitics is often a strange tapestry, woven from diverse threads. Understanding it is simpler if you have a good sense of humor and a greater sense of irony. Almost 20 years ago, I called an old law school buddy to discuss two matters: his boss and the media’s betrayal of Americans with disabilities. “Dave,” I said to him, “it took the American media 200 years to create the negative images and stereotypes used to describe disabled Americans. It took the media only two weeks to negatively protray your boss. Do you think he would be interested in helping us change the media’s negative images and stereotypes of people with disabilities, if we helped him change his image?”

That’s how I became the Vice President of the United States’ first and last special assistant to deal with disability policy. The first threads of my unique tapestry were woven several years earlier, during my days as one of “Barry’s Boys.” Between 1961 and 1964, I was a Young Republican from Texas, crusading for Senator Barry Goldwater, who was running for president. Like many young people, my venture into politics was a reaction to the time and place into which I was born and raised. In our little corner of East Texas, my mother and I were certain that we were the only Republicans. But in my junior year of high school, I discovered like-minded rebels who resented the establishment. During my freshman year at Texarkana Community College, I was president of the only Young Republican Club within 180 or so miles. I stuck with Barry through the presidential election debacle of 1964, which effectively ended my career as a political activist. I discovered, as Goldwater did, that the Republican Party was moving to the right side of the eagle. By today’s standards the neo-cons make Barry and I seem like raving Libertarians. Many people might look at my past and wonder how I can say that my political activism lasted for only three years. The answer is simple. I learned the secret of politics: work for the official and not the candidate, and you can have a more substantial effect on history. Within one year, I served on the staff of the Speaker of the United States House of Representatives (a Democrat) and on the staff of the Vice President of the United States (a Republican). 64

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The Speaker, Jim Wright of Texas, was considered to be one of the most powerful leaders his party had seen since Lyndon Johnson. Some might assert that he learned his skills at the knee of Machiavelli. In the world of politics, however, that is not necessarily an insult given that, for some, the end goal of winning elections is accumulating power. Wright later resigned amidst a scandal that would barely cause today’s politicians to blink. His alleged crime: He insisted organizations buy large quantities of a book he’d written before he would agree speak to them. When I went on to serve as special assistant for disability policy, I was on the staff of one of the most ridiculed Vice Presidents in U.S. history. Because of his verbal faux pas, the media portrayed him as a bumbling idiot, and a political liability who couldn’t spell. However, compared to our current President, Dan Quayle was really more like Daniel Webster than George Bush could ever hope to be. Quayle was also a man whose integrity and honesty were never challenged. I once said about him on a Public Broadcasting Service (PBS) mini-series, “I have a genuine affection for the man … and I don’t give a damn how he spelled potato.” On the same PBS special I was asked, “What substantive things did Dan Quayle do?” “Washington isn’t about substantive things, it’s about images,” I replied. “The Vice President came to our events, promoted our events, and allowed me to work for passage of the Americans with Disabilities Act.” In four years, Dan Quayle met and shook hands with more disabled Americans than all the Vice Presidents in our history. He was fighting for the Americans with Disabilities Act even before I met him. For the record: Between 1964 and 1994, I was a registered Democrat, and not known as a particularly conservative one. I’ve been asked many times what I told the Vice President about the disabled and disability issues. I still clearly remember two things: “All disabled people in this country are not middle class white guys in wheelchairs.” And, “If you can’t accept the fact that people with disabilities can be saints and sinners, then you can’t accept the fact that we’re human.” Just like politicians. by George Covington

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C o n f e r e n c e s

ABILITY 71

ABILITY

ABILITY 75

ABILITY