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US $4.99 Volume 2008 Laura Innes
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E DITOR - IN -C HIEF Chet Cooper
M ANAGING E DITOR Pamela 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. Ben Nelson (D-NE)
E DITORS
Dahvi Fischer Renne Gardner Sonnie Gutierrez Eve Hill, JD Glenn Lockhart Josh Pate Maya Sabatello, PhD, JD Romney Snyder Lisa Wells Jane Wollman Rusoff
HEADLINES — CVS, Red Cross, AT&T Foundation
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HUMOR THERAPY — It’s Sad Not Being Happy
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GEORGE COVINGTON — When Life’s A Blur
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SENATOR LETTER — Ben Nelson
Extremity Games
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C ONTRIBUTING W RITERS
Raytheon’s Path p.22
Courtney Gale Linda Boone Hunt Gale Kamen, PhD Laurance Johnston, PhD Andrea Kardonsky Deborah Max Myles Mellor - Crossword Puzzle Paula Pearlman, JD Richard Pimentel Allen Rucker Kristen McCarthy Thomas Betsy Valnes
DRLC — Is Your Health Care System Accessible?
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ALLEN RUCKER — Thoughts on the Writers Strike
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GREEN PAGES — Save Bucks in the Bathroom
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BETSY VALNES — Sticks and Stones
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DEAF CRUISE — Partiers of the Caribbean
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RAYTHEON — Paving Rhodes to Independence
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WILL DOWNING — Lucky Number 13
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CHAIRKRAZY — Making Music, Making Change
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LAURA INNES — From Acting to Calling Action!
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RICKY JAMES — Back On His Bike and Racing Ahead
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DR. HANS KEIRSTEAD — Stem Cell Pioneer
DIRECTOR OF BUSINESS AFFAIRS
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RICHARD PIMENTEL — Get A Job (Here’s How)
MARKETING/PROMOTIONS
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UNITED CEREBRAL PALSY — Life Without Limits
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EVENTS & CONFERENCES
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H UMOR W RITERS Laura Innes p.40
Joy Cortes
G RAPHIC A RT / I LLUSTRATION
Music Within
Scott Johnson Paul Kim Melissa Murphy - Medical Illustration
P HOTOGRAPHY
TransworldMX.com Kwaku Alston Deaf Cruise p.20
T RANSCRIPTIONIST Sandy Adler
John Noble, JD
Jacqueline Migell Andrew Spielberg
PUBLIC RELATIONS JSPR
NEWSSTAND CIRCULATION Will Downing p.28
John Cappello
EDITORIAL
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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 Laura Innes Printed in U.S.A.
George Covington, JD Jeff Charlebois Gene Feldman, JD
W EB E DITOR
ABILITY’s Crossword Puzzle
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IN CASE OF EMERGENCY
Improving Disaster Relief Preparation
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he World Institute on Disability (WID) and the American Red Cross recently announced an innovative national training, awareness and action program to help Red Cross staff and volunteers better serve people with disabilities during a crisis. The program will be funded through a $300,000 Verizon Foundation grant.
DYNAMIC DUO
CVS, Dept. of Labor Ink Pact
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he U.S. Office of Disability Employment Policy (ODEP) and CVS Caremark Corporation have established a two-year pact to promote employ-
ment of people with disabilities.
“Hiring, retaining and advancing employees with disabilities is just good business,” said Karen M. Czarnecki, acting assistant secretary of labor. ODEP falls under the Labor Department. “ODEP and CVS Caremark will share information,
guidance and resources that will help to develop
model programs for other employers, particularly in
the retail and pharmacy services industries,” she
added.
Throughout the two-year alliance, CVS Caremark and ODEP agree to jointly distribute training and education materials to the company’s human resource leaders, along with information on disability employment practices. The two entities will collaborate to identify resources to support workplace accommodations. They plan to disseminate information that promotes a national dialogue on disability-employment issues. A team comprised of representatives from both ODEP and CVS are at work on a series of related initiatives. “CVS Caremark is pleased to form an alliance with ODEP, which will help us in our commitment to developing an inclusive, diverse company,” said V. Michael Ferdinandi, the company’s senior vice president of human resources. “We look forward to working together to recruit and train people with disabilities-and help put them on solid career paths at CVS Caremark.” CVS employs about 190,000 people at its 6,200 retail
and specialty pharmacies, 11 mail-service pharmacies
and 14 call centers.
www.dol.gov/odep/alliances/index.htm
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Following Hurricane Katrina, the Red Cross saw a need to improve outreach and response to vulnerable populations, such as people with disabilities, the elderly, children and low-income communities. WID and the Red Cross will set up a pilot program in one of 10 targeted locations across the country that could be hit by a major disaster. The pilot location has yet to be selected, but Chicago, Houston, New Orleans and New York will be training sites. Once the pilot program is complete, the Red Cross will expand the training to all 10 locations to teach 200-300 staff members and volunteers how to better serve people with disabilities in emergency preparedness and disaster response. The WID also will develop disability resource directories for each location, including information on local community-based disability organizations. www.wid.org
NOW HEAR AND SEE THIS
Better Web Access For Visually Impaired
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he AT&T Foundation, the corporate philanthropy organization of AT&T Inc. recently announced a $25,000 grant to the American Foundation for the Blind (AFB) to expand access to affordable speech and screen-magnification products for adults with vision loss or low vision. Traditional screen-access technologies for reading computer output aloud and/or magnifying the text on the screen have revolutionized the way that blind and visually impaired individuals are able to use the Internet. However, the technology is often pricey and requires expensive specialized instruction that can be difficult to obtain. The AT&T grant will allow AFB to evaluate and identify low-cost, easy-to-use technology that helps visually impaired people and people with eye diseases, such as macular degeneration and glaucoma, access the Internet. AFB TECH experts will evaluate 10 of the newest, most affordable screen-reading technology programs. The two or three highest-rated programs will be sent to the AFB Center on Vision Loss in Dallas, where they will remain available for visitors to test and determine what works best for them. www.corp.att.com/foundation www.afb.org
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e spend the majority of our days griping about work, gossiping about friends, complaining about the unfairness of life. I don’t understand why it’s so hard to be happy. Look around, you live in a great country. You have food, shelter, your health… and you’re probably not related to Michael Jackson. That, in and of itself, should give you cause for great joy. Do material things make a difference? Of course, you fool. A new car, a boat, nice clothes, golf clubs—these are the essence of true happiness. Don’t worry if you don’t have these things. You can still be happy, you just can’t show off. Can money buy you happiness? No, but it will buy you an airplane ticket to the Caribbean allowing you to escape from the cesspool of life’s headaches. (Personally, I’ve always found a pina colada on the beach brings me closer to true happiness. Put a babe next to me and I’m beating on nirvana’s door.) Happiness is a result of being thankful. Everyday I give thanks that I am able to drive a car. Public transportation is a downer. A scruffy guy eyeing your breasts on your way to work can ruin your day—especially if you’re a man. I’m also thankful for Santa Claus and the Easter Bunny. Yeah, whenever I get free stuff, I’m happy. But, most of all, I’m thankful that I have a beautiful, fluffy kitty whose fur I can rub my face in. It’s the little things that make us happy. Remember the story of the man who didn’t have any shoes, which brought him great sadness? Then, he met the man who didn’t have any feet. But even the guy with no feet is still ahead of the game: He doesn’t have to clip his toenails every week. There’s nothing worse than being around sad people. You tend to gaze at your watch more, all the while contemplating a clever excuse to get away. I have a friend who’s always whining, telling me how bad his life is and that everyone hates him. He feels it’s impossible to be happy. Then, he seeks my advice: “You’re always up. You’re always happy. How do you do it?” My reply: “There are so many times that things go bad, I feel the world is against me and I think I’m a loser and my life sucks. Then, I look at your life and wow, I feel so much better about mine!” Hey, it works for me. Why is happiness so hard to achieve? It’s because we greedy pigs always want more: A bigger house, more money, a fluffier kitty…
Gimme what that guy has… and double it. Super size me, baby! Can’t we just be happy with what we have? The short answer to that is “No.” The longer answer is “No way.” What’s up with that? My guess is peer pressure. It probably started with the caveman. Thor would come home with a Saber-Tooth tiger. Then, his neighbors one-upped him with a Wooly Mammoth, which threw the pressure back on Thor to drag home a Wooly Mammoth, too. When life becomes a contest, everybody loses, which leads back to unhappiness. Look, we all want our Wooly Mammoth, but we shouldn’t base our level of contentment on what we have or don’t have. Can’t we just be happy with a piece of flint? I think happiness is a choice, and we always have choices: Mild or hot Buffalo Wings. Stripes or plaid. Fox or CNN. Happy or sad. I choose the former, mainly because choosing the latter tends to make me unhappy. Still, happiness takes work. You really have to look on the bright side of things. For instance, when it’s raining, be happy that you don’t have to pay your illegal immigrant gardener to water your grass. You can now take that $5 and buy a “tall” Starbucks coffee. So, what is the key to happiness? It’s taking the time to look at your life. If you squint, I think you will find that you already have everything you need to be happy. Most of us are not starving, as evidenced by all the chubby children running around with diabetes. These kids are happy because they can loaf around, listening to their IPODS, while their parents are happy because the kids are around to provide them with free tech support on the family computer. You can find happiness in any situation. When it comes time to pay the bills, do it with a smile. If you don’t have any money in your account, call your parents to cover your deadbeat butt. This is great because helping others makes people happy, so you’re really helping your parents to be happy. Go ahead, take them for everything you can, but only if you want them to be tickled pink. Happiness can be tricky, though the concept seems simple. Going through life happy is better than going through it miserable. The Chinese have a saying, which translated goes something like: When things are inevitable, you might as well enjoy them. Since living is inevitable, why not enjoy it? When it’s all said and done and you’re sitting in your rocking chair after your homecare assistant has changed your diaper, you want to be able to say, “I did it all with a smile.” Right now, I’m just happy to be finished writing this, so I can turn this garbage in. by Jeff Charlebois ABILITY 7
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or most of my adult life I did not need a white cane to navigate life’s travails. During my college years, I could “pass” for sighted unless someone saw me trying to read. In that era of strange addictions, people who saw me with my nose in a book assumed that I got my kicks sniffing ink.
It was not easy to look cool when I only had 10 percent of what is considered normal vision.
Even in a well-lighted place, there was no way I could read a menu, so my date had to perform this ritual. When she read not only the dishes, but also the prices, I knew she thought I was a loser.
Standing in a cafeteria line, I did not want the young lady serving me to see me pressing my nose to the glass. So I asked a fellow journalism student what meat dishes were being served that day.
Even with poor eyesight, mobility was easy thanks to my instinctive and unerring sense of dread. It even helped me cope with unforeseen events on my first trip to New York City:
“You’re standing in front of what looks like some pretty good spaghetti and meatballs,” he replied.
“Sorry! No, I don’t usually step on people,” I told one guy, “but most people don’t lie on the sidewalk.”
I pointed and said, “I’ll take that please.”
No one can be cool in front of a doctor, except, perhaps, another doctor or an attorney who specializes in medical malpractice.
When I got it, it didn’t exactly smell like spaghetti and meatballs. When I sat down to investigate further, I discovered a plate full of cherry cobbler. Once, at a party, a young lady started a friendly conversation. As I went to the bar for refills, I asked a friend what she looked like. “A dog, man, a real dog,” he said. “She’s so ugly you could catch it.” I talked with her a little longer and then started a boring legal argument with a fellow law student seated next to her. I found out later that my friend must have developed a sudden canine crush, because he left with the girl. It’s been many years, and I still haven’t gotten even with my friend. Fortunately, the statute of limitations hasn’t run out yet. Dark restaurants also guarantee that I do not look cool. I gave up suavely reaching across a table to light a lady’s cigarette long ago. Although there was nothing better for getting a French waiter’s attention than my date’s piercing scream. Unfortunately, dousing the flames on her nose also dampened the evening’s mood. To seem a tad less bumbling, I developed a number of standard replies when I wandered into the women’s restroom: “I don’t read French!” “I didn’t understand the symbol on the door!” “I’m blind drunk!” 8
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Several years ago, I went to one of the country’s leading retina research centers to find out what was causing my retina to degenerate. First, the assistant looked in my eyes and immediately called the head doctor, who called another assistant. The first assistant then got on the phone and summoned four other doctors. Within minutes, I was on my back in a darkened room with seven doctors lined up to take a look at what they hoped would be their next paper, article or book. The only thing they seemed to know for sure was that I appeared to have a right eye and a left one. I decided to be cool because getting hysterical around physicians can get you locked up. I tried to poke a little fun to lighten the mood: “The last time I saw a patient get this much attention was on ER—and the guy died.” But there wasn’t a snicker in the crowd, so I took my eyeballs and went home. During law school I discovered that photography could help eliminate the blur. By reducing millions of tones, textures and colors to a half-dozen shades of grey, I could see detail that had once been obscured or invisible. I assumed my first self-portrait would reveal a young Robert Redford; instead I turned out to be a young Groucho Marx. As my eyes continued to fail I discovered digital photography and the ability to turn my portrait into high-contrast sketches. Now I can look cool and actually see what I’m looking at. When it comes to the realm of flirting, my motto is: “I never make a pass until I make a print.” by George Covington
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support in the House of Representatives for the president to sign off on it. Unfortunately, some legislators would rather repeal the program than improve it. The contracts between the IRS and private sector debt collection companies offer a great opportunity for the federal government to stimulate creation of well-paid jobs for those who are disabled. Salaries at third-party debt collection agencies range between $25,000 and $150,000 annually, with most averaging $40,000. These positions include health and 401(k) benefits. If the federal government initially hired 750 persons with disabilities, it could potentially save up to $344 million over 10 years in Supplemental Security Income and Disability Insurance benefits. Still, since its inception, many attempts have been made to end this IRS program, but I continue to try to make it work.
COME ON! LET’S PUT PEOPLE TO WORK Dear ABILITY Magazine Readers, As a former governor of Nebraska and a current U.S. senator, I have met many of my fellow citizens who have disabilities and who, compared to the typically able population, face staggering unemployment. Despite the landmark Americans with Disabilities Act [ADA] of 1990, as well as the advancement of assistive technologies, the playing field is not yet level. In recent years, thousands of returning veterans who fought in Iraq and Afghanistan have found themselves among the disabled as well, and they, too, have been forced into the unemployment line. We must address this issue immediately. When Congress passed the American Jobs Creation Act of 2004, it authorized the Internal Revenue Service [IRS] to hire private agencies to collect unpaid income taxes. This is how most federal agencies and state governments go about getting outstanding monies owed them. The IRS private collection program, now in its pilot stage, has already brought in nearly $30 million. For three years, I have been working in Congress to enact a disability preference program for debt collection contracts. This legislation would give preference to third-party debt collectors who employ at least 50 persons with disabilities, and who agree to hire 35 percent of their contract workforce from this untapped talent pool. The goal of the program is to promote the employment of persons with disabilities—including veterans— within the IRS private collection program. While on several occasions my legislation has passed the Senate unanimously, it has yet to receive the necessary
Employees assigned to the IRS contract who are hired through the private collection program must pass the same level of scrutiny, including background checks, as IRS employees. They also undergo IRS-approved project training and testing. Therefore, contractor employees are the best available applicants for job opportunities within the IRS when it hires internal collectors to do the work, before or after repeal. Under the disability preference program, that valuable training, certification and job experience that workers receive could also later lead to gainful employment in the private sector or in other government offices. After the program, workers would be better qualified to perform telephone-collection work and other positions within the collection industry. Even if the IRS program is repealed at some future date, the disability preference program is still worthy of support. If the IRS contract were to expire or be terminated, veterans and other workers who are disabled could likely retain employment through reassignment to another project within the company. Finally, use of this employment initiative will show government entities that similar contracting requirements can be used to continue to provide meaningful opportunities for civilians and veterans with disabilities. By using federal contracting opportunities such as the IRS program, we have the ability to create private sector job opportunities for persons with disabilities, and for returning soldiers disabled while serving our nation. It is my hope that together we can create a better, more positive future for all persons with disabilities. Sincerely, Senator Ben Nelson ABILITY 9
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IS YOUR HEALTH CARE SYSTEM ACCESSIBLE?
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hat is the question disability rights advocates in California are asking people with disabilities. A 2005 California health survey identified 7.8 million California adults, or nearly 30 percent of the adult population, as having disabilities— this based on a broad measure of disability adapted from the Census Bureau’s American Community Survey.
To better serve this population, the non-profit Civil Rights organization, Disability Rights Legal Center (DRLC) in Los Angeles, which works to promote and protect the rights of people with disabilities, is conducting a state-wide survey to identify barriers people with disabilities are experiencing in obtaining needed health-care services. DRLC worked with the California Foundation for Independent Living Centers (CFILC) to develop a survey to assess the accessibility of health-care service providers in California. The Civil Rights organization is also working with other members of the Respect-ABILITY Coalition, a statewide group of disability rights and service organizations to learn the answer to that question. While federal and state laws prohibit disability discrimination and require access and accommodation, people with disabilities continue to face many barriers in terms of accessing health care facilities, services and programs. People with mobility disabilities may have difficulty getting in the main entrance of their doctor’s office or accessing waiting and examination rooms. People who use wheelchairs may also encounter other challenges: • using examination chairs and tables • being weighed • accessing x-ray equipment Individuals who are deaf may have difficulty in getting interpreters for medical appointments. Those who are blind or have low vision may have problems obtaining provider lists in alternative formats (e.g. Braille, CD, large print), or receiving educational materials in alternative formats. Furthermore, they may not receive medical history forms in a user-friendly format. Any one of these difficulties can result in negative—and in some cases serious—consequences for a health care patient who has a disability. They could result in misdiagnosis, prescription of inadequate or even harmful treatment, and frustration on the patient’s part in trying to get needed health care. The survey issued by the DRLC and the Respect-ABILITY Coalition aims to provide a current snapshot of access problems that Californians with disabilities face across a wide spectrum of health care access needs. The center will develop a fact sheet about the accessibility of services across California and report their findings at a Spring 2008 Respect-ABILITY Conference. It will use those findings to develop policy solutions for greater access to quality health care for people with disabilities throughout California. To take the Health Care Accessibility Survey online go to www.respectabilitycoalition.org. You can submit your survey online, or a PDF or MS Word version may be downloaded and returned via mail or fax. The survey is available, upon request, in Spanish, Braille, large print or on CD. The survey project is being funded by a generous grant from the California Endowment, a statewide health foundation whose mission is to expand access to affordable, quality health care for underserved individuals and communities, and to promote fundamental improvements in the health status of the state’s residents. by Shawna Parks, Thomas J. Hill, Paula Pearlman and Eve Hill DRLC works to end discrimination in access to health care, public accommodations, employment, transportation, insurance, education, housing, and other key areas of life, visit: www.disabilityrigthslegalcenter.org 10
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STRIKE! THE WRITERS GUILD, DISABILITIES AND YOU
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s you’ve probably heard, the Writers Guild of America, the union that includes every writer who has written every fictional movie and television show you’ve ever watched your entire life, went on strike against the Alliance of Motion Picture and Television Producers (AMPTP), including the six megacorporations such as Time Warner and Fox who today control almost anything you watch outside of videos on Google and You Tube, although I’m sure they’re working on buying those companies, too. It’s about the future, and who will get paid for the material that runs on the Internet, the iPhone, the Blackberry, and all the other zippy technology that will soon dominate the entertainment media for the next millennium. This is big stuff, especially if you are a writer. And what affects writers in Hollywood affects you, too, so please keep reading. One caveat: I’m writing this on the very day that the two sides of this historic dispute have gone back to the bargaining table, the first time since the strike began
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four weeks ago. I fervently hope that they are pounding out a fair deal right this minute, since hundreds of thousands of people in the entertainment industry are affected by the shutdown. Let’s just assume they have reached a glorious agreement, writers are dancing in the streets and we can now focus on what this strike has accomplished. First of all, the strike brought to the forefront how quickly things are about to change in the delivery of all media in this country. How many of you now watch shows like The Office or Curb Your Enthusiasm by either downloading the first from NBC.com or watching the latter at 3 am on Video on Demand? How soon will it be before you simply instruct your cell phone to download The Office automatically through a free wireless link? Or how soon before a better, zanier Office shows up as original programming on a website yet to be invented? Or better yet, how soon before some device, yet to be created—where the content doesn’t even resemble TV programming—shows up on a digital service yet created and makes some smart-ass Harvard kid a zillion dollars overnight? Not long, my friend, not long. Indicative of the current power and reach of Internet
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entertainment are the flurry of writer-generated videos on You Tube and other web outlets skewering the recalcitrant AMPTP. Most of these were knocked off for next to nothing by unemployed writers from The David Letterman Show, The Daily Show and the like, and they are wildly entertaining. Ironically, the very medium these producers want to control is being used against them.
you enter where you don’t feel like an outsider. For a 1,000 reasons, there is an invisible barrier you must always traverse.
Sweet justice.
So, stay tuned or logged-on or something. With the rise of the new media, the makers of that imagery will likely change and, along with the makers, the imagery itself. And all of those multi-millions of disabled people in America may finally see their own reflection staring back at them on the digital delivery system of their choice.
The second lesson of the strike, at least for those sensitive to such matters, is to underscore how potentially life-changing this new media frontier could be for the disabled community. With few exceptions, disabled performers, writers and other creative workers, have been largely shut out of conventional TV and film, even the burgeoning business of cable TV. There are incremental signs of improvement here and there—a president with polio in Warm Springs here, a onelegged woman on My Name Is Earl there—but nothing that comes close to adding up to a new day for the disabled in the arts and media. Every one on the front line in Hollywood will keep beating on those doors, trying to get in. For instance, there were at least two sitcom pilots last season that focused totally on the world of the disabled. Unfortunately neither was picked up, but neither were 6,000 other pilots. But as opportunities expand exponentially for all creative people in the brave new world of digital, they also expand for the creative disabled community. In many ways this new media landscape is a blank slate for anyone with the right ideas. And it would seem that a writer at a computer who happens to be sitting in a wheelchair, like me, is on the exact same playing field as one sitting in a really uncomfortable hardback chair. On your mark, get set, create the future! Recently at the Writers Guild, we sent out a voluntary survey questionnaire asking disabled writers to identify themselves so we could have a better understanding of who was out there. We got a pretty hardy response—70 or so people, disabled or not, wrote back in support— but one nasty reply laid out a common and sensibleseeming argument about why a writer with a disability should not be considered a special category or deserve anything more than a ramp to the office. The person said something like: “Who cares if a writer is disabled? Physical impairment has nothing to do with writing! Write a good script and no one will care who wrote the damn thing. Stop your bellyaching and start writing!” That person is right, of course, except in the real, dogeat-dog-eat-writer world of TV and film. It’s an alterante universe of pitch meetings and power breakfasts, schmoozing and social networking. However, if you arrive in a wheelchair, there is hardly any room that
It’s no doubt the same for you in your business, too, but your business probably doesn’t generate the human imagery that permeates every one of our media-addicted brains.
I saw a small glimpse of this new reality during the strike itself. Danny Murphy, a member of the Screen Actor’s Guild’s Performers With Disabilities Committee (PWD) and maybe the hardest working disabled man in show business, helped stage an event that included both performers and writers with disabilities coming out in support of the Writers Guild strikers. He figured it would show us gathering together around a common cause, and probably generate a fair amount of media curiosity. We could just imagine the local TV reporter’s brain turning: Look, a bunch of people in wheelchairs carrying signs. Roll camera! Which is exactly what happened. Actually, they really just wanted to talk to Robert David Hall, perennial star of CSI, who just happens to be a double-amputee, and the rest of us crowded into the shot. But more importantly, 40 to 50 actors and writers with disabilities gathered with other picketers in front of Warner Brothers’ studio and basked in our mutual presence. We were visible, not only to Channel 7 but to each other! For at least one day in the image-obsessed, status-obsessed, look-at-me-obsessed high school called Hollywood, we were the dominant clique on campus. It was a joyous occasion and hopefully a portent of greater collaboration and support. So, assuming the strike is over and we can all get to work creating the post-television media age, look for more disabled writers, performers, entrepreneurs and visionaries in the mix. If we don’t seize the day, it will be our own damn fault. by Allen Rucker
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ost high water bills are caused by leaking toilets and can waste up to 200 gallons of water a day. While many leaks can be spotted, some are silently draining your wallet. The culprit may be a bad flapper valve, flapper valve seat, a bad ballcock valve, an improperly positioned float arm or a defective overflow tube. “Great,” you say. “I don’t know what any of that means or what to do about it.” Don’t worry. Take a trip down to the hardware store, act as clueless as I do when I’m in one of those stores and find a kindly person in the plumbing department. They may very well take mercy on you and help you find your way. Also, many cities offer free home water-audit kits; but, even if yours does not, a quick trip to chat with that compassionate soul at your hardware store could take care of that. These kits include non-toxic dye tablets. Take one tablet, drop it in the tank and stir slightly, but do not flush. (Note that it goes in the tank, not the bowl. You may think this is obvious, but few things are funnier than walking into the bathroom, seeing a bright blue bowl, panicking because you think there’s a blow-hole-size leak in the john, and then finding out that your dear hubby dropped the tablet into the wrong place.) After that, leave the toilet alone for 15 to 20 minutes. When you check back, look for color in the bowl. If there is any color, sorry, but you’ve got yourself a leak, which means one more trip to the hardware store. Just as bad are annoying dripping faucets, which can waste 20 gallons of water daily. Fortunately, faucet leaks are easy to detect. If it drips or worse, continues to run after you shut it off, it needs to be fixed quickly. If the dripping water is hot, the situation is even more urgent, as it is wasting the energy used to heat the water. A dripping or running showerhead is usually caused by a bad washer or seal. Be sure to check for leaks from the tub faucet when a tub shower is on, as it defeats the purpose of having a low-flow showerhead if the water you were supposed to be saving is actually heading down the drain. Problems with plumbing fixtures are usually due to old age and corrosion or wear and tear, and replacement or repair parts can be purchased at a local hardware store or at a plumbing supply store. Save yourself some money in the long-term by making these repairs as soon as possible. By the way, if you’re a do-it-yourselfer with little ones, get them involved. Not only will you be teaching them about water conservation, but they’ll have fun helping out, while learning how to make home repairs like a big kid!
SAVING THE WORLD ONE FLUSH AT A TIME Older toilets use upwards of three to seven gallons of water per flush and may account for up to 50 percent of your indoor water use. Add to that the number of goldfish burials you’ve performed over the years, and you can see why reducing the amount of water that goes down the drain makes a lot of sense. Though they may cost a few hundred on the front end, low-flush toilets use only about 1.6 gallons of water per flush, and save about 8,000 gallons of water per household per year, which can save you a bundle on your water bill. 14
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If you’re not in the market for a new latrine, however, you might consider adopting this Earth-friendly policy: “If it’s yellow, let it mellow. If it’s brown, flush it down.” Of course this policy is not in effect when company calls.
kids’ creativity come in! Once a month (or every other month) make or get the kids to make new signs for the bathroom mirror. Humor counts. If you’re cracking yourselves up every time you brush your teeth, it means you’re actually seeing the sign!
Yellow just not your color? Other alternatives include toilet dams, water-filled containers and a 1.6-gallon flapper.
Another way to save water is to fill a cup halfway with water for rinsing. Now before you gross out at the notion of one cup for all, the idea is that everyone in the house has their own cup. Even better, each family member can decorate his or her own! Hit your local Color Me Mine or grab some durable cups along with paint pens at the nearest arts and crafts store.
Toilet dams make your tank “smaller” by using plastic barriers to prevent water from running out when you flush. Filling small, plastic containers with water and putting them in the tank will keep the water level high enough to flush well, but reduces the amount of water that actually flushes. Low-flow flappers simply shut more quickly, thereby reducing the amount of water in the tank that is available for each flush. These devices displace water and can reduce outflow by up to 25 percent.
CAN YOU SPARE A SQUARE? No doubt, we have to have toilet paper. But how much do we really need every time we go to the bathroom? In ancient China, where TP was first introduced, each square was a whopping 2’ by 3.’ My daughter seems to side with the ancient Chinese on this issue: You could make a few dozen mummy movies from the amount of TP she goes through in a single week. Yes, Sheryl Crow got a bunch of flak when she proposed that we cut way back, but as a family or household you may want to consider it. Choose a realistic number of sheets that everyone can live with for various duties and pledge to abide by it. You’d be surprised by how simple this is once you get into the habit. Even better, you’ll save money and cut down the amount of paper that ends up in our sewers!
TURN-(OFF) SIGNALS I know water conservation isn’t top-of-mind first thing in the morning. Still, I put up little signs in the bathroom to remind everyone to turn off the faucet while brushing teeth or shaving. It may seem like a little thing, but if you consider that five percent of a home’s water consumption—or 2,500 gallons per year, according to the Environmental Protection Agency—can be traced back to the bathroom faucet, a quick shut-off makes good economic and ecoeffective sense!
My husband, the shaver in the family—at least until I hit menopause—borrowed a nifty idea from the TV show “M*A*S*H.” Who said the boob tube couldn’t be educational? He has a specially designated cup for rinsing his razor so he hardly turns the sink faucet on at all. Too bad that method doesn’t work so well when I’m shaving my legs. My balance is good, but not that good.
HANKY PANKY Gezhundheit! It happens all the time: Our darling, little germ sponges drag some nasty cold home from school—tissues start flying around faster than death stars in a martial arts movie. After you dig yourself out from underneath the pile of used icky tissues, take a cue from our forefathers and invest in cloth hankies for the whole family. Not only will this keep oodles of tissue paper out of the cycle, but cloth is much softer on raw, little noses. If the possibility of little Jenny using a hankie formerly employed by little Michael, creates too much of an “ew” factor, I suggest personalizing each family member’s respective hanky. Most craft stores carry cloth pens and such, so let everyone go to town creating their own unique pieces of art! by Kristen McCarthy Thomas Kristen McCarthy Thomas is a public relations specialist with an integrated marketing communications company in Southern CA. She leads the company’s Environmental and Sustainability Task Forces, and helps the company’s 70-plus associates “green up.” Kristen writes the www.just2hands.blogspot.com, which we’ll occasionally excerpt here. She is writing a book on how parents can reduce their family’s environmental footprint through inexpensive (if not money-saving), easy-to-understand steps, as well as pass the torch of environmentalism to the next generation, not only by action, but example.
In the beginning, a Post-It is fine, but after a few days, I tend to glaze right over them. Here’s where your or your ABILITY 15
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he topic of—and often battle over—“correct” disability terminology has led to heated conversation as long as we have allowed language to describe us. We intuitively compare what is right vs. what is wrong. What is prideful vs. what is demoralizing. All of these inquiries are valid, yet in our quest to identify appropriate titles for our community and for ourselves as individuals, have we perhaps gotten stuck in the quagmire of jargon? The list of options presented above comes from firsthand responses given to a question posed in an “investigation.” (More about this in a moment.) Two details about this particular list are important: 1) These replies were given within the last six months; and 2) All of the
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people who responded refer to themselves as disability activists or advocates. Surprised? If your response was the same as any one of these advocates, regardless of which option you chose from the list, it’s safe to assume that you, as a person with a disability, still want equal education. You are still looking for equal employment opportunities. And you still want health insurance that doesn’t penalize you because you were born with CP, had a brain tumor removed as a teenager or select holistic medicine rather than the chemicals your doctor prescribes. The question then becomes: Is any one of us, as an individual, in a position to define “right and wrong” when it
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comes to referring to a disability, since a range of language is used within our community? Might the variance in terminology itself be a form of diversity that should be respected, especially when people use these terms to describe themselves? Bottom line: Is terminology really our priority? And if it is, should it be? As the disability community, what are we really looking for, and to what should we give priority, equal rights or universal terminology? I recently participated on a team of people invited to review and select essays for a national publication. The essays were specifically about young people with disabilities. Submissions came from parents, community members, medical professionals, siblings and friends. A few were from people with disabilities themselves, but most articles came from people without disabilities, who were serving as an “ally.” Although each essay was written in a spirit of goodwill and no writer intended to speak in a derogatory manner, I was taken aback by how negatively the various writers described young people with disabilities. Parents wrote of how they were “embarrassed” because their child was born with autism, or without arms or with mental retardation. They described weeping for days, praying and wishing that they could make their child “normal.” I read how medical professionals felt pity for families who had children with “defects” and “abnormalities” that would “impair them for life.” Teachers described being so proud of their “special students” simply because they came to school that day— rather than noting the child’s legitimate academic accomplishments. Out of respect, I told one of the book’s formal authors that I would have to write something about this review experience. On more than one occasion, I sat at my computer and watched as my frustration crept into the article I attempted to write. I’d hit a block after just a few short paragraphs. Ultimately, I filed away my notes, and decided to begin my own investigation. It entailed simply listening to people in the disability community describe themselves. For the next six months, I asked people who define themselves as disability rights activists about disability terminology. The vocabulary list at the beginning of this article was the result of my listening activity. As you can see, noticeable diversity exists among us as disability activists. The list seemed long, and its content surprising. But in all reality, that list was nothing more than a glimpse of the range of terminology being used when including the disability community, as well as its friends, parents and allies. The original list of terminology compiled while reading and scoring the publication submissions refer to people with disabilities using words ranging from “a crip” to “wheelchair restricted.”
A Partial List of Disability Terminologies/Descriptions as Read in Essay Submissions These terms came from parents, community members, medical professionals, siblings, friends and even from people with disabilities. Although the majority of these terms are anything but complimentary, the writers noted that they are working towards some of the same goals as ABILITY 17
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language that might be used in its place. But I am also posing the challenge, myself included, to look at the bigger picture—getting past terminology to the point that we can focus on working together and achieving our movement’s larger goals: such as education, employment and healthcare. And in this process, allowing people to see for themselves just how wrong and offensive terms like “debilitated” and “invalid” really are.
those of us in the disability rights arena: empowering young people with disabilities. In spite of the negative language, the majority of these people still wrote about wanting equal rights, equal education, competitive employment and suitable health care. The majority, however, didn’t seem to think it was possible. In the movie The American President, one of the characters says: “Politics is perception.” Terminology, in my opinion, is not much different. If people perceive individuals with disabilities as being “burdensome,” “damaged,” “dumb” or “flawed,” then regardless of the writer’s claim of wanting equal education and career opportunities for all, in their reality they don’t perceive that is possible. Let’s be honest. The disability community can be equally negative and exclusive. The responses in the first list all came from people striving to lead a march of social unity. But not a small number of them rolled their eyes at one another’s choice of vocabulary. One activist uses the term “special needs,” while another prefers the word “crip.” Some found the first phrase “too dated” or “derogatory to one’s self,” while others felt the latter descriptor was “too aggressive” or “discriminatory.” By the time we got to the part of the discussion with the terms “diseased” and “unintelligible,” “special needs” and “crip” seemed tame. One possibility to unite these divides—the disability community itself as well as those who could serve as its allies—might be to intentionally embrace the challenge of looking past terminology. Admittedly, there are words in both lists that make me ill, and if I heard them spoken, I would be forced to ask if the user knew what was being implied. I would note offense taken and why, and I would provide alternative,“socially appropriate” 18
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Vocabulary won’t change overnight. But those in the disability community have countless opportunities to influence change in our daily lives. We need to look past internal separations that stem from the nametags we give ourselves, and focus instead on the bigger issues in our lives. Right now we are missing opportunities to come together because of first impressions formed, very often, by one-word phrases. Liberalizing our view of terminology might also broaden our view of other self-identifying elements such as cultural beliefs, sexual orientation or economic background. And greater diversity on a range of fronts could, in turn, lead to increased awareness, understanding and respect which, ultimately, could lead to social change. Admittedly, one of the simplest things in life is recognizing that something needs to be changed, and one of the most difficult things in life is actually changing it. In this particular case, we are challenged to explore the possibilities for improving disability rights by suggesting that unity be given greater priority than language. Our quest to improve social justice must take precedence over worrying what those of us working to improve it are called. by Betsy Valnes Betsy Valnes, a young woman with Traumatic Brain Injury and Anomia, is an active member of the Disability Movement in the U.S. and abroad. She currently serves as the executive director for the National Youth Leadership Nework.
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ome say that the deaf community throws the best partries. So imagine seven of them, seven days and nights in a row! That’s what was on tap when Tabitha and Mac Partlow recently chartered a cruise on Royal Caribbean’s Freedom of the Seas, where nearly every passenger out of the 3,800 was deaf. The Partlows became motivated to host their own weeklong jam when they took a cruise a few years ago and enjoyed it so much that they wanted to share it with friends. But when they organized a group of traveling buddies, some of whom were deaf, the cruise line promised them interpreters and other accommodations that never materialized. “We had about 25 guests who were out of luck, so they missed quite a bit of [the fun of] their cruise,” says Tabitha, who is a certified interpreter. “Though we worked very hard that week to make things the best we could for them, it wasn’t the same.” (To make up for the misunderstanding, the cruise line allowed those disappointed guests to come back for a second week on the house, uh, ship.) Here the Partlows talk about how they came to commandeer the biggest cruise ship in the world in their own remake of Mutiny on the Bounty: MAC: After that first cruise, our friends said, “No more of that travel agent, you take care of it.” TABITHA: So one year we took 350 deaf people on Royal Caribbean’s Adventure of the Seas, and it was amazing. We had a great time, and we knew that we could fill an even bigger ship. People wanted to see it happen. So we went for it. The idea was: Let’s do a whole ship and give people who are deaf the opportunity to be in their own community on a cruise. When we called Royal Caribbean, they said, “Not only can we do that, but we’ve got this fantastic new ship being built.” This was 2005. This ship wasn’t even on the radar for anybody. Mac and I were brand-new travel agents, working out of our house, saying, “OK, let’s do it!” We advertised and got a tremendous response. Some people thought that this was going to be a huge challenge for us, and that we weren’t ready for it. But we were, and Royal Caribbean really stepped up and responded to the
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requests that we made. We said, “This is what we think,” and gave them some ideas. For instance, specialized room kits. MAC: The kits that were in every room on the Freedom are going to be available upon request from here on out on Royal Caribbean voyages. They include a strobe-light door knocker, an amplifier for the phone and an alarm clock with under-mattress/under-pillow vibrator. For this particular cruise, there were also sign-language interpreting services, closed captioning for the TV, as well as TeleTYpewriting (TTY). TABITHA: In terms of entertainment, our goal was to provide an experience that was a bit more deaffocused. Our cruise director, John Maucere, did a great job. MAC: He really helped with getting deaf performers to sign on. We had 16 of them, including CJ Jones, Anthony Natale, Bernard Bragg, Keith Wann and Sencity. The shows that Royal Caribbean had were phenomenal as well, and we didn’t want to cut them out. But we did want to add something that would be attention-grabbing to the deaf community. So we went for a combination of visual arts, and a louder, more powerful type of music. MAC: When they told us they were going to build this ship and told us the name, we were like, ‘Oh, that’s perfect.’ It represents the freedom that people who are deaf can experience by themselves on a cruise, and we’re really excited about what’s possible down the line.
TONS OF FUN From the first steps onto the ship terminal in the Port of Miami, I was overwhelmed by the way the Freedom of the Sea’s staff made eye contact and welcomed each person in sign language. After a few toots of the ship’s horn, off we sailed en route to Cozumel, Mexico; George Town, Grand Cayman; and Ocho Rios, Jamaica. It was truly a dream to drift along crystal blue Caribbean waters, especially for the thousands of members of the deaf and hard of hearing (D/HH) who had chartered the biggest cruise ship in the world. Passages Deaf Travel, working in concert with Royal Caribbean, made it not only possible but easy.
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rom the first steps onto the ship terminal in the Port of Miami, I was overwhelmed by the way the Freedom of the Sea’s staff made eye contact and welcomed each person in sign language. After a few toots of the ship’s horn, off we sailed en route to Cozumel, Mexico; George Town, Grand Cayman; and Ocho Rios, Jamaica. It was truly a dream to drift along crystal blue Caribbean waters, especially for the thousands of members of the deaf and hard of hearing (D/HH) who had chartered the biggest cruise ship in the world. Passages Deaf Travel, working in concert with Royal Caribbean, made it not only possible but easy. Designated interpreters were visible around the ship throughout the week. The crew had 30 training sessions to prepare for our cruise—and it showed. A picture menu in the dining room was even developed to help the wait staff and passengers communicate. As a person who is not affected by hearing loss, it was remarkable for me to understand how it feels to be in the minority. Hanging out on the ship, many guests enjoyed the Flow Rider—a surf simulator that allows you to surf or body board on the ship. One feature for kids was the H2O Zone, where they could play among the vibrant sculptures, which sprayed water in all directions, or flop about in pools designated just for them. The rock climbing wall, ice skating rink, day spa and cantilevered whirlpools were also popular attractions. In Cozumel, I joined a group that swam out into the Caribbean to snorkel, where two interpreters were present. They made sure each person was briefed on the safety precautions as well as general instructions. As we snorkeled together, the leader carried a flag so that we could follow en masse, while enjoying the refreshing waters, spectacular reefs and brilliantly colored fish. Together, the cruise line and travel agency had notified
each port in advance that there would be deaf and hearing-impaired guests visiting. The locals got the heads-up as did many shop owners who made special arrangements, some employing interpreters. The sparkling sea off Grand Cayman Islands stretched as far as I could see, fringed by fine white sand. There I joined a group that spent the day at a local beach club, where we enjoyed the relaxing atmosphere and general camaraderie, despite the fact that I had difficulty communicating at times. One of the best parts of the trip was Dunn’s River Falls in Ocho Rios, Jamaica. Though a steep climb, everyone in our tour group, including those who had low vision, made it up through the rushing water fall. It was an experience not to be missed! Also in Jamaica, Hands on Video Relay Services. (HOVRS), a sponsor of the cruise, had brought along clothing and financial donations they’d collected to St. Christopher’s School for the Deaf. HOVRS provides a new communication tool that allows the D/HH community to communicate effectively and naturally with the hearing world through American Sign Language, which was used every day to welcome guests to the pool deck. Deaf Nation, the media sponsor for the cruise, filmed most of the activities and many excursions, and showed a daily video montage. It’s exciting to know that this wasn’t just a one-off: Passages Deaf Travel has exciting, upcoming plans, including upcoming trips to Alaska in 2008 and Hawaii and the Mexican Riviera in 2009. by Andrea Kardonsky Andrea Kardonsky runs the Deafness Research Foundation (DRF). Entering its 50th year of service, the DRF and its programs help to make a lifetime of hearing health possible for all people through quality research and education. DRF publishes Hearing Health magazine, which is DRF’s primary channel for public outreach and education to a national audience, including consumers with hearing and balance disorders and the professionals who serve them, such as otolaryngologists, audiologists, researchers and manufacturers. www.drf.org
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ecently ABILITY Magazine editor-in-chief Chet Cooper spoke with Steve Tamburro, co-chair of the association of persons with disabilities at the Raytheon Company. Tamburro helped plan a recent Creating Pathways to Work retreat. The daylong strategic-visioning event brought together key representatives of federal and state government, educators, members of the business community and advocates for people with disabilities, along with Rhode Island Congressman Jim Langevin, the first quadriplegic elected to Congress. They huddled to address the barriers and challenges people with disabilities face when trying to enter the workforce. Tamburro, who has had MS for 10 years, serves as manager of Community Partnerships for Raytheon, an 80-year-old company that specializes in defense, homeland security and other government markets throughout the world.
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Chet Cooper: How did you get involved with the retreat? Steven Tamburro: I’ve been a member of the Rhode Island Business Leadership Network for the past few years. It was there that I met Elaina Goldstein. She leads Rhodes to Independence, which is devoted to ensuring that people with disabilities who want meaningful employment are able to find it. They also hold job fairs and prepare job candidates so they are interview-ready. Elaina and I discussed a number of different things, and she invited me to serve on a conference panel to discuss the barriers and problems folks with disabilities face when trying to enter the work force. She decided to have me as a guest on the panel to represent the Business Leadership Network, Raytheon, as well as people with disabilities. It was a very interesting conference, but in the end everyone kind of turned to each other and said, “OK, now what?”
Step 6: Achieve—Capture results and celebrate the achievement; document lessons learned, sharing project documentation to shorten the cycle of learning when others approach similar issues. Cooper: Sounds comprehensive. So, during the event, how did you identify who should be the key participants? Tamburro: In Rhode Island, the issue is complicated because there are many different state agencies all trying to do the same thing. It’s almost like they’re in a competitive mode instead of a supportive one at times. So we knew that all of the folks in the state who are currently helping people with disabilities needed to be at the conference. That meant that we needed to get a commitment from the Department of Human Services, which we did. When Elaina approached the point person for that department, Gary Alexander, he immediately said,“Yes, we’ll definitely get the key people there that you need.” He got all of the different organizations involved by throwing his support behind it.
Cooper: Did anyone answer that question? Tamburro: (laughs) Well, at first there was silence in the room. That’s a very bad thing for me, because when there’s silence, I tend to make a comment. But this time, I felt confident speaking up since it was about Raytheon’s Six Sigma process. We use it to solve all different kinds of problems or to facilitate a process, whether it be in manufacturing or in an office. So I said, ‘I don’t know how successful I’ll be, but I’m going to see if I can get Raytheon to sponsor a Six Sigma event to see if we can figure out our next steps.’ And we went from there.
We also wanted some folks with disabilities who have actually used the system, their families, service providers and any other stakeholders. We were very successful in getting the attendance we needed. Cooper: How did you get Congressman Langevin to participate? Tamburro: He’s always been a supporter, both in Washington DC and within the state. He came to the event and brought two staffers. Cooper: What were the results?
Then I met with our vice president at the corporate office, Larry Harrington, who is an advocate for inclusion in the corporation in a number of different ways. He was very supportive. So we applied our Six Sigma methodology to the problem. It goes like this: Step 1: Visualize—Establish the burning platform: Why is this problem worth investing the time and resources required to solve it, and what are attributes of the ideal or future state? Step 2: Commit—Identify and obtain the commitment of the accountable sponsor; the sponsor ensures allocation of appropriate resources to move forward. Step 3: Prioritize—Determine the scope of the project and the key, prioritized tasks required for the effort. Step 4: Characterize—Document and analyze the current state, detailing and identifying the root causes of any undesirable effects, and identify potential alternatives. Step 5: Improve—Apply tools, data-driven analysis and rational decision making processes to select the optimal solution; create and implement an improvement plan. 24
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Tamburro: We identified the burning platform—the main problem that we’re trying to solve. Then we were able to create a vision statement to make sure that Rhode Island’s commitment to inclusiveness reflects something that truly recognizes the ability of all citizens, not just their disabilities. We also identified key stakeholders to serve as catalysts and move forward with the Six Sigma tools. One thing that rang true was that there was a lack of knowledge about all the resources available within the state. Even folks that work with people with disabilities on a daily basis did not know all the resources available, and if they did, most didn’t understand them well enough to recommend them. Also, various agencies weren’t working together. So there was definitely a need to clarify all the different organizations, what they do and how they do it. Workers needed to be made aware and familiarized with these programs. If somebody becomes disabled or is living with a disability and jumps on the internet to do research, they need to be able to determine which agency is best for them. So there needed to be more of a
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common vision and collaboration among the agencies. They needed to inform providers and clients of what is available and what might be best for them. So we focused a lot on education. There were also knowledge gaps among the field workers. By that I mean, the field-office staff needs to be fluent with all the programs and processes and just provide accurate information and excellent service. The only way to be able to do that is to be fluent in how the services work and how the folks with disabilities can access them. So one of the themes that just kept coming up throughout the day seemed to be education, and that was a problem area that we could solve fairly easily. So each group took back work with a small team to start looking at getting some of these issues resolved. So those would be the next steps. Cooper: Did you set dates for additional meetings? Tamburro: Yeah, we’re hoping to have a progress meeting. There were some things—what we call “low-bearing fruit”—which we could do now and get some benefit from now. So those are the types of things we’re trying to implement going forward. Cooper: Can you name some of this “fruit?” Tamburro: (laughs) Specifically, some areas of education. One of the things that Amy Judge—the legislative assistant from Congressman Langevin’s office—was
going to do is schedule town hall meetings to talk to people and educate them at various locations, mostly in Rhode Island. Continuing throughout next year, we were going for what we call constituent engagement, which meant collecting data from all of the town hall sessions and initiating advocacy in the legislative arena. So once there’s a good feeling for these town hall information-gathering sessions, we’ll start looking to see what type of role the legislature might play in this, what types of things need to be passed, what types of things need to be improved upon. Cooper: So at this point you’re not prepared to set goals for a number of people that should be hired over a certain period of time? Tamburro: We didn’t set any specific goals for the state of Rhode Island. There are people in the state that monitor those metrics as to how many folks with disabilities get jobs and how many retain them, so that data is available. What we’re hoping to do now is help people understand everything that’s out there and become better educated about state services and providers of those services. So that’s who we’re hoping to really impact, and that’s something we can measure. I’m hoping to be able to get the same group back together at some point next year. But at a minimum, we can definitely do some type of survey of all the participants and find out how they see things changing. We could also go back to the actual clients, people with ABILITY 25
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disabilities and ask how they’re doing. We could ask folks who used the system before the education process and folks who haven’t, to get a sense of whether or not people are becoming more aware of the services. So it’s kind of a tough thing to get your arms around, but the fact of the matter is, the confusion is something that we feel we can clear up, and the education process is something that we can monitor and measure. We also wanted to follow up, after people went back to their groups, and find out how they were doing. Did everybody leave this event and go back to their lives and just say, ‘OK, that was a nice day with a nice lunch,’ and
Steve Tamburro, co-chair of the association of persons with disabilities at Raytheon
you’re doing—integrating all the different services and educating? Tamburro: One-stop centers, as the name suggests, were definitely intended to be just that. You go in and you get all the information you need. But for whatever reason, that is not what was happening. To put your arms around it got extremely complicated. But that’s something we believed we could look at and have an impact. Cooper: Has Raytheon set any company hiring goals in this area? Tamburro: I don’t know specifically of any goals to hire people with disabilities. However, I do know that our company is extremely supportive of employees who have disabilities. Any needs-accommodation is provided without question for new hires and for anyone being interviewed for a position. Cooper: So Raytheon is very active in Rhode Island. You probably have different hubs throughout the country? Tamburro: Yes, we have facilities throughout the country and we’ve got international facilities, too. The business unit that I’m with is in Portsmouth, RI. There’s a number in Massachusetts, California, Washington state and Huntsville, AL. Last year, Raytheon Missile Systems, which is based in Tucson, AZ, won the Department of Labor New Freedom Initiative Award. Their submission for that award goes into a lot of detail about the work they’re doing in and around Tucson within that business unit. The person who got this effort started in Tucson is the co-chairperson for the Raytheon Corporate Persons with Disabilities group. He gave me a lot of the information I needed to get the one in the Northeast started, so I’m very familiar with what they’ve been doing out at Missile Systems and the types of benefits that they’ve been getting from their organization. Cooper: Did I hear that you have MS? Tamburro: Yes. Cooper: How long ago were you diagnosed? Tamburro: Going on 10 years now. Cooper: And how are you doing?
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that’s that? Or were they truly committed? I think everyone at the meeting was excited. There was definitely an energy running through the room, so I really do believe that there will be some great impact from this.
Tamburro: Well, I sometimes feel like a chemistry experiment, between all the medications I inject or swallow. But for the most part, it’s keeping my MS fairly stable. It’s not something you can improve, so the more you can keep it stable, the better off you are.
Cooper: Aren’t the one-stops supposed to be doing what
Cooper: You’re on one of the ABC-group of medications?
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Tamburro: Yes, beta serum. It’s been working pretty good for me. Cooper: That’s good. Did you see the article we did with Terry Garr? Tamburro: I did see that. Cooper: You know, she had an aneurysm, which is so bizarre, which has no connection, as you probably know, to MS. But some people were trying to connect the two, which is not the case. Tamburro: Because it can affect so many different things with you, there’s a lot of confusion about the different symptoms and ailments associated with MS. But that’s for the doctors to figure out.
I think if we can have this kind of synergy around us and get it going around the country a great chain reaction can occur. Cooper: Recently you participated in a follow up session with the director of the Department of Human Services and some members of the business community to talk about outcomes of the Rhodes to Independence seminar. Tell me about that. Tamburro: What was exciting was that I didn’t set it up; they asked me to come talk. So a lot of energy has been created around this project. And if we can continue that around the country, I think we’re going to do a wonderful job in helping people with disabilities really break into corporate America in a big way. Cooper: I’d like to hear more about the panel.
Cooper: Were you doing anything around disability issues prior to being diagnosed? Tamburro: I’ve been on the board of directors for Goodwill Industries of Rhode Island now for 14 years. When I was studying for my MBA, I got involved with them, and I had no idea that some day I would actually need their services. But we started Goodwill Industries in Rhode Island, which goes back to the Civil War, when they helped veterans disabled in the war. So it’s got an amazing history. I’m the chairman of the board now, and I’ve always been involved with them, and always will be.
Tamburro: It was held in Providence to brief the New England Partnerships’ quarterly meeting. This is an organization of health care professionals who were interested in what happened at the Rhodes to Independence event. The panel members had all participated in the recent six sigma event at the Rhodes to Independence Strategic Visioning Retreat and presented their overview, as well as areas they would be championing going forward.
Cooper: Did you get a chance to meet Congressman Grandy.
Two of our leaders brought the group through an abbreviated version of how the process of seeking services works in RI. Everyone on the panel agreed that the process, in most states, is too complicated for both service providers and people with disabilities to navigate.
Tamburro: The one who played on The Love Boat.
Cooper: Why do you think that is the case?
Cooper: Yes, I didn’t want to say Gopher, but yes, him.
There are many people doing great things but they are in there own “silo” of expertise. Getting everyone to work together is vital to breaking down the barriers to employment for people with disabilities. This orchestra of professionals needs to not only follow the same conductor, but also insure they are on the same sheet of music!
Tamburro: He’s no longer the chair of the International Goodwill Industries, but yeah, I was able to meet him once. You want to sing the Love Boat theme as soon as you see him. Cooper: He’s a good sport about that, but I’m sure it grates on him. He’s done so many other things. Tamburro: Oh, I know it! (laughs) Definitely. Cooper: What, ultimately, do you think the value of Rhodes to Independence will be? Tamburro: I think it has already proven to be groundbreaking in that there are a lot of different things that are going on in the country where companies can really help. They can volunteer their time, participate in walks and what have you. But this is something where we’re using a problem-solving process that is effective in corporate America to solve a human-service problem.
Gary D. Alexander, Director of the RI Department of Human Services said, “To accomplish this goal, we are breaking down the silos to make this consumer-centric.” After the meeting, I was approached by Dr. Jay Himmelstein, Professor of Family Medicine & Community Health at the University of Massachusetts. He was very interested in conducting a similar session in the state of Massachusetts. The word is spreading. www.raytheon.com/diversity
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he number 13 turned out to be lucky for singer Will Downing. With his first dozen albums, the popular balladeer breezed into the studio, recorded his vocals and went about his merry way. But last year, as he embarked upon his latest recording, he fell down the stairs in his home. At first he blamed it on the fact that he wasn’t wearing slippers, until he found himself slipping in other ways: His muscles ultimately weakened to the point where it was hard to get out of a chair, cross a room or even breathe. Diagnosed with Polymyositis, an autoimmune disease that affects the muscles around the trunk area, he had to sing from a hospital bed or his wheelchair, recording only a line or a two at a time. To take such tiny steps to finish that 13th album, “After Tonight,” made him feel very fortunate indeed. Pamela Johnson, ABILITY Magazine’s managing editor, caught up with Downing one evening at home, where he talked about facing the greatest challenge of his life, his biggest fears and the new faith he’s found in a higher power, and also in himself. Pamela Johnson: How are you feeling today? Will Downing: Pretty good. PJ: Excellent. I was just listening to your new album and liking it very much. WD: Well, you have to listen to it some more until you love it! Liking it ain’t gonna cut it! PJ: [laughs] You had quite a challenge recording it. You started to feel some of the symptoms of polymyositis around the holidays last year? WD: Yeah, that’s when I fell down a flight of stairs at home. PJ: From the muscle weakness? WD: Well, I didn’t know what it was at the time. I figured, Okay, I didn’t have my slippers on. My foot slipped. Then another thing would happen and I would blame it on something else. But it was this polymyositis slowly taking my muscles and reducing them to nothing. PJ: I heard you were being a little hard-headed, and didn’t go to the doctor immediately. When did you actually get there? WD: On January 3rd, 2007. I had gone through at least a month of these symptoms before I went to the doctor. I’m the type of person who can start feeling like something’s wrong—a toothache or whatever—and I can say, “Oh, I’ll be fine tomorrow,” and I’m going to put it off until it’s excruciating. That’s what I did in this case, and obviously I made the wrong decision. PJ: Did waiting cost you? ABILITY 29
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WD: Doctors didn’t say that, but when you’re dealing with an illness of any type, the earlier the better. If you feel something, you should go get it checked out. PJ: So that’s something you would do going forward, that was a lesson left with you? WD: From here on out, that’s going to be my mindset. That’s what I would recommend to anyone. PJ: After you fell down the stairs, what else were you feeling that was different? WD: It felt as if I had someone on my back, like I was carrying another person around. When I walked, it was hard for me to lift my feet up, or to lift something, or to get up or even stand up. I’d be on a plane and they’d be deboarding, and it took me forever just to stand up and get my bearings. It was like nothing I’ve ever felt before. PJ: You had plans to tour at the beginning of the year, right? WD: Yeah, well, I’m always on the road anyway. We had plenty of dates booked for 2007, but this situation obviously sidelined that with the quickness. PJ: One typical symptom of your condition is difficulty swallowing. Is that something that you dealt with as well? WD: Absolutely. Eventually, everything that you’ve probably read about polymyositis came to pass for me: massive weight loss, problems swallowing, lack of usage of my limbs. I went through it all. I even lost my voice at one point. PJ: Not only your health, it’s also threatened your livelihood. WD: Exactly. You know with this thing, your lung capacity decreases extensively. You can’t breathe the way you’d like to. You can’t hold notes as long as you’d like to. All the things that you never really thought about are extremely important all of a sudden. It’s the crux of your life. PJ: Compare and contrast before you were diagnosed and after you were diagnosed in terms of how you had to accommodate dealing with your condition. Before it, you could be casual about the process: It was your 13th album—like falling off a rock, basically. WD: Yeah, before, it was just my normal routine. I’d cut tracks and go to a studio, cut the vocals, stand up and sing. After I got this, it was trying to figure out a way to 30
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get these vocals out, because I was basically relegated to a wheelchair and a hospital bed. So those were my two options. How do you want to sing today? You want to sit up or you want to lie down? It was extremely difficult, because breathing is the whole key to singing. And when my breathing was compromised, I had to find different ways to get the lines out. PJ: How did you compensate for it? WD: Recording, for those who don’t know, is rarely done in one take, and in this instance, we really Frankensteined this project together. PJ: (laughs) WD: That’s a hell of a way to say it, but that’s what we did. One day we’d do a verse and then we’d stop. Maybe the next day, if I felt up to it, I’d do a chorus. The day after that, if I felt like I could sing, maybe I’d do the bridge of a song or the end of the song. So it took me a lot longer. PJ: How long would it usually take you to do an album, and how much time did your condition add to the process? WD: I don’t know, there really isn’t a timeline on how quickly an album is put together. But under normal circumstances, I can probably do a whole song in about three or four hours, where in this case it might have taken three or four days. Same outcome, different procedure. PJ: And probably more treasured, in a way. WD: Well, more treasured, but also a mix of treat and trick in the same session. One thing that comes along with this lovely disease is that it messes with your head, so you’re extremely depressed. You have to deal with that fear: Am I ever going to sing again? and God, why are you doing this to me? That sort of thing. PJ: What’s been your lowest point? WD: It’s hard to say. I remember lying there one night going: If this is what it’s going to be like, I’ll opt out. I had days like that. PJ: I thought it was really interesting that you recorded a Phyllis Hyman song No One Can Love You More since, as you know, her death was from suicide. Through her depression, she reached the depths of pain as well. WD: Right, but some days I woke up and said,”OK, I’m going to fight back. This circumstance that I’m in right now, it doesn’t necessarily have to stay like this. It doesn’t have to define my life.” It helps to talk about it. It
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doesn’t make any sense to keep emotions to yourself. You don’t have to go through this alone.
had to go back. I went back to the hospital for another at least two, two and a half months. Now I’m back home.
My state of mind was affected by who I surrounded myself with, as well. The people that I surround myself with are very positive and very supportive. Also, everyone I’ve spoken to who’s had this has come back. It might have taken them a while, but they’ve come back.
PJ: How much do you weigh now?
PJ: Fully?
PJ: (laughs)
WD: Pretty much. Some say 80 percent, 90 percent.
WD: Everyone else is trying to stay away from bread and all these carbohydrates—
PJ: When you’re in the depths of the valley, I’m sure 80 percent or 90 percent must sound like heaven.
PJ: —ice cream and everything.
WD: Let me tell you something. If I can get up and walk from here to the door, I’m going to be happy.
WD: And me, on the other hand, they’re trying to shove it down my throat.
PJ: You’re married to a singer [Audrey Wheeler], so I’m sure you’re able to commiserate with her about what singing means to you...
PJ: Are you able to walk at this point yet?
WD: Exactly. Singing is an outlet for me. It’s not everything, but it’s a great outlet. I think I’ve known what I wanted to do since I was young. And to be able to have fulfilled my dream is more than I could ask for. It ain’t been a bad trip. PJ: A lot of blessings. WD: Lots and lots of blessings. So this is the down side. And even in this, there’s a lesson to be learned. I haven’t quite figured out what it is, but I know there is one.
WD: Taking a few steps here and there, working with the physical therapist, trying not to push myself too much. Just moving at the right pace. PJ: What’s the treatment, then? WD: Well, the treatment that worked for me was this drug called Rituxan. I’ve been on just about everything that everyone else has tried, but Rituxan works for me. It’s something that you take once a month by IV. It takes four or five hours to get into my system. PJ: Excellent. And the doctor’s prognosis at this point?
PJ: One lesson is to get to the doctor.
WD: He’s ecstatic. As far as he’s concerned, he’s a musical genius.
WD: Very true.
PJ: (laughs)
PJ: But I’m sure more is revealed as time passes.
WD: He’s seen me at my lowest and he’s seeing me come back. It’s good to have him look so happy about my recovery.
WD: Exactly. PJ: How much weight did you lose? WD: Oh! Under normal circumstances, I would average between 200 and 210. At my lowest point I was at 115. Pretty kooky. PJ: Oh, my goodness, Honey! How long were you in the hospital? WD: This year I’ve easily spent six months in the hospital. The first time I went in, they kept me for three months, and I came back home and then I got pneumonia, and I 32
WD: About 140, 145. So it’s gradually coming back. I’m probably one of the few people who can say, “I can eat whatever I want.”
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PJ: It’s common to have muscle conditions run in a family. Has anybody else in your family dealt with anything like this? WD: No, not a soul. They don’t know where it comes from. No one can explain it to me. No one can explain anything. PJ: We have weekly editorial meetings, and we talk a lot about our environment, and how much we can’t control. The stresses of our lives sometimes are not conducive to the level of health that we’d like to have.
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WD: I agree with that. In my case, there are a lot of accolades to be gotten in the music industry, and I think that I was chasing all of them, sometimes to my detriment. PJ: You had a high stress level? WD: I was taking every gig that came up, doing two and three shows a night, chasing that almighty dollar. Get it while you’re hot. That has always been my attitude. I probably pushed it too far. PJ: And now? WD: I think that I would slow down a little bit more to, as they say, smell the roses. I’ve been all around the world, and yet I’ve never been anywhere. PJ: You haven’t really spent time and gotten to know a place? WD: Exactly. If I have a show in London, I fly to London today, we’ll take one day to kind of rest up a little bit, and the next day we’re working. After the work is done, we’re back on the plane back to America. It’s like, Okay, did you really see London? PJ: What are some of the other roses that you might smell? WD: I will spend a lot more time with my family. I have three children, and I don’t think I’ve been a bad dad, but in truth I certainly could have done better. PJ: Do your kids recognize you? WD: Oh, of course! They’d better! PJ: (laughs) “I think that’s Daddy.” WD: “Wait a minute, let’s see a profile!” PJ: (laughs) How old are they, and are any of them musical? WD: My oldest, Will Jr., is 22, my daughter, Siobhan, is 16, and my youngest, Aja, is 11. She’s very musical. I think she’s going to be the one to hold up the flag in the family. PJ: Will, what would you say you’ve learned about yourself during this experience? WD: I’ve learned that there’s more to life than the one or two gems that are put before you, and that you only go around one time. No one has ever come back and told me otherwise. So utilize your time wisely. Spread yourself around a little bit and enjoy what little time we have. It was a wakeup call for me. PJ: It sounds also like your spiritual life grew richer? WD: Oh, without a doubt. God has always been in my life and I’ve always attended church. But the relationship I have with God now is a ABILITY 33
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whole lot closer than before I got sick. Like most people, when you’re down and in need, all of a sudden, Okay, He’s been sitting there waiting for you, and now here you come. It’s like: Well, I think I’m gonna call on the Big Home Run Hitter now. I’m like most people, but I don’t think that when I come out of this I’m going to turn my back on the One who saved me. I got the message.
PJ: Well, the baby always seems to stray the furthest. WD: It’s certainly true in my case. PJ: When you started recording again after your condition was diagnosed, did you switch out any of the material for After Tonight? No. 8 on the CD is God Is So Amazing. Did you plan to record that originally? WD: Not at all.
PJ: What about your relationship with your family? WD: Oh, it’s fantastic now.
PJ: Was it just the one song, or was there anything else you chose that was more of a mirror of where you were at the time?
PJ: Has this experience changed it in any way? WD: It’s always been good, but when you’re in this position, and I’m not talking about sick, I’m saying as an active, touring recording artist, there is a bit of separation. I haven’t been to a family reunion in 20-someodd years. I’ve missed birthdays and anniversaries and graduations and things like that because I was chasing the dollar. So maybe I can take some time out to put someone else first. PJ: Needing to be home to recuperate, there wasn’t even a choice about whether you were going to spend time with family or not. WD: Now I’m back in the sixth grade with my daughter doing homework. I no longer get a telephone call from her in whatever city I’m in. Now I sit with her at the edge of my bed, and it reminds me of when I was a kid. My mother was a schoolteacher, and she would make me sit at the edge of her bed and do my homework. PJ: And your dad? WD: He was a skycap at the airport. PJ: Wow! Interesting. So neither one of your parents was an entertainer?
PJ: You talked to other people who have the condition. How did you get in touch with them? What have some of the conversations been like? WD: When people heard what I had, they came forward and said, “You know what? My mother had that years ago. I’m sure she’d love to sit down and talk with you.” Or my next-door neighbor knew someone that had gone through it. So it was good to talk with these people and see what they had experienced, what they took, the exercise they did to get back, that sort of thing. It was great to have someone to talk with in detail about it. PJ: What are some of the exercises you’re doing? WD: A lot of trunk exercises, basically sit-ups from a wheelchair. Just imagine sitting at the edge of a chair, lean forward against your arms, and then lean back. You just keep doing that, where you have to use your abdominal muscles to pull yourself back and forth. PJ: Starting out how many could you do, and how many can you do now?
WD: No, no, no. I think I was adopted. My brother is an electrical engineer. My sister is a school principal, and my other sister is a schoolteacher. So I don’t know where I fit into this equation.
WD: I probably started out at five or seven of them, and not being able to pull myself up at all, to today, I think I did 40, four sets of 10.
PJ: And where are you in the lineup?
PJ: What other exercises do you do?
WD: I’m last.
WD: Leg lifts: When I’m sitting in a chair, I lift my leg and hold it out straight for two seconds and then lower it. I do breathing exercises, where I might say my ABCs, sing them to myself. Breathing in through my nose, letting air out through my mouth, that sort of thing.
PJ: Oh, the baby? WD: Yup.
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WD: Other than God Is So Amazing, maybe the Bill Withers’ song, You Just Can’t Smile It Away. Those two are a little left of center of where the rest of the album is. But that’s where I was mentally and emotionally.
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PJ: Is it a strain to talk to me now? It doesn’t sound like it. WD: No, not at all, not at all. Every once in a while I’ll go on the oxygen to build my lungs back up, taking deep breaths. PJ: What were some of the other things that you heard from folks with polymyositis? WD: It affects each person differently, so some of what they told me was relevant to what I was going through and some of it wasn’t. Some people have gone to the extreme, where they didn’t have the ability to breathe on their own. They had to have a respirator. For me, my limbs, stayed pretty strong, my fingers, my forearms, but up a little higher in my shoulders and biceps, they’re extremely weak. So it’s a strange thing to be able to crush a can with my fingers, and then have somebody say, “Hey, reach over there and pick that up,” and I can’t move my arm. PJ: It really affects the trunk, so the closer you get to the trunk, the weaker— WD: That’s one of the things I really have to work on. That’s the thing that’s not allowing me to stand up straight. I’ll stand up with the aid of someone, and they might have to push me in my back in order for me to get my upper part straight. If not, I’ll just bend over. This thing took away all my trunk muscles. PJ: With the people who said they got 80 percent to 90 percent of their former functioning, how long did it take them?
PJ: Obviously, as a result of the career you’ve had in music, you’re very familiar with a lot of elements of it. When you think of it now, if it weren’t singing, what might it be for you? WD: Maybe management, maybe concert booking. If I had the patience to go back to school, I would probably go for law and then come out and do entertainment law. But I don’t have that kind of patience. PJ: But you may develop it. It seems patience is actually being foisted upon you, if not coming from within. WD: Oh, without a doubt. Another thing that I’ve done over the last 10, 11 years is become a photographer. So maybe I could really put my effort into that as well. I actually shot the cover of one of my CDs, All the Man You Need. PJ: What would you say the biggest gift of this experience has been for you? WD: I think for me, it’s about faith. If I never believed in anything before, I believe in it now. PJ: You need a rock?
WD: It varied. I’ve heard some people say they’ve come back in seven months. Then I’ve heard some people say it’s taken them two years. Yeah, initially when I got sick and I heard seven months—
WD: Oh, yeah. When your back is against the wall and that’s all you’ve got, that’s really when your faith is tested. I’ve got a lot of faith now, in God and in myself. That keeps me motivated. My faith level is off the charts right now.
PJ: You hopped on that, right?
PJ: Tell me about how the faith in yourself has evolved.
WD: I was like, “Great, I’ll be back by so and so.” And when I find myself being sick again, I’m calling people and saying, “Did you guys relapse at all?”
WD: Maybe I reached for something, and I couldn’t get to it yesterday. But today I could. Instead of doing the 10 sit-ups, I might have done 11 today, which is going to push me to do 12 tomorrow. I have to believe that I’m getting better. I have to believe that God can cure anything. I may not see improvement in leaps and bounds. That’s not the way life is. But what keeps me going is that the light at the end of the tunnel seems to be getting a little bit closer.
PJ: How has it been in terms of getting around in a wheelchair, reorienting yourself in your own home and in your life? WD: Well, it’s a pain in the butt. I wish I could lie to you and tell you that it’s sunshine every day, but it is a pain in the butt. I haven’t been able to go upstairs in my house for a year. I am relegated to the downstairs area. Getting to the other rooms in the house requires that I go up 13 stairs. I don’t have that ability. 36
PJ: What is one of your greatest fears? WD: That this very well could be my last album, and trying to figure out, okay then, now what? What do I do now? I’ve sung my whole life. Before that, I’ve only had odd jobs.
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To hear a song from Will Downing’s latest recording, After Tonight, go to www.abilitymagazine.com/downing
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P o l y m y o s i t i s
occurs throughout the world, affects all age groups often appears at mid-childhood or in the twenIties)t(though and is a bit more common in females. As with most connective tissue diseases, polymyosits (pol-e-mi-o-SItis) affects many areas of the body and is thus considered a systemic disease. When associated with a skin rash, it is called dermatomyositis. Occasionally, it is associated with cancer. Among a family of rare inflammatory diseases that include Multiple Sclerosis (MS) and Rheumatoid Arthritis (RA), polymyositis, like the others, is not completely understood. All three typically involve the immune system, attacking a particular organ (or organs) in one’s own body, giving rise to the term “auto [meaning self]-immune disease.” Sometimes an inciting event such as a viral infection is the culprit. Since the connective tissue within the particular organ system is affected, these diseases are referred to as “connective tissue diseases.” In the case of MS, the immune system attacks connective tissue cells in the brain and spinal cord, causing symptoms in the nervous system. In RA, the tissue attacked is in the joints, causing pain, swelling and difficulty in movement. With polymyositis—“poly” meaning many, “myo” meaning muscle and “itis” meaning inflammation—the tissue affected is in the muscles, resulting in severe weakness in the upper arms and upper legs.
This can make it difficult or impossible to stand or even brush one’s teeth. One may have trouble swallowing or lifting one’s head from a pillow. Muscles may atrophy. Onset of symptoms ranges from gradual to rapid. There are flare-ups at times that later recede, better known as exacerbations and remissions. Despite the condition’s more dormant periods, it is chronic and affects the patient for the rest of his or her life, sometimes shortening the lifespan. The exact cause or causes of autoimmune diseases is not known and effectiveness of treatment varies. Some cases of polymyositis appear to have occurred as a result of a genetic predisposition. There is indirect evidence that one particular type of polymyositis is caused by an unidentified virus. Two types of treatment are used. The first is a class of potent anti-inflammatory drugs called corticosteroids, which are given in increasing and decreasing doses in accordance with the severity of the symptoms at the time. The second, used when corticosteroids aren’t sufficient, is immunosuppression drugs, which, as the name suggests, suppress the immune system. They have fewer, but more severe side effects and make a patient more susceptible to infections. by E. Thomas Chappell, MD www.myositis.org www.mayoclinic.com ABILITY 37
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n 1989, Marcus Ingram stood near two young men in the middle of an argument. As the fight escalated, one turned his back just as the other pulled a gun and fired. Instead of hitting the guy with whom he was fighting,, he struck Ingram instead, the bullet shattering his spine and paralyzing him from the waist down.
A freshman at North Carolina Central University at the time, Ingram went on to graduate and become a music producer. He admits however, that he, too, had once been caught up in the drama of the streets. Had he not been shot, he believes that he’d might not have changed his ways in time, and very well could have been in jail or dead by now. That’s why he refers to his condition as his “ultimate ability,” and is grateful that he’s survived not only the worst that life has to offer, but emerged ready to take advantage of his second chance. Ingram has told the story of that fateful night to countless audiences. Over the years, he’s found that it is best to keep spirituality and humor as the focal point of the story, rather than the act itself. When he tells the tale with a dash of humor, people relax about his condition and the fact that he’s in a wheelchair. While laughing at his description of the events, people often called him ‘crazy,’ which led him to adopt the tag ChairKrazy. But on a serious tip, Ingram is thoroughly convinced that it was insanity that aggravated the emotions of the shooter.
Unfortunately, violence in the Hip Hop community is still all too commonplace. For many rappers—Ingram not included—to have been shot or stabbed is a badge of honor; it gives that person “street cred” aka street credibility. As a professional rapper, Ingram’s paralysis piques marketers’ and promoters’ interest. Shown in his wheelchair, he might be considered as possessing the ultimate in street cred, but he prefers not to hype that aspect of his experience. Instead, he devotes time to showing others how to overcome potentially devastating roadblocks. He speaks to women about protecting themselves in relationships, and to young males about gang activity and its consequences. He sees any interaction with others along the way as an opportunity to assist. He believes that there are no coincidences, and all things have a divine purpose. “That belief alone helped me to evolve to a place of peace,” he says. As a person navigating the world on two wheels, there is something that can quickly disturb that peace: “I get so frustrated when people without handicaps park in the handicap slots. Especially when I need to get out [of my car] with my chair.” He drives with the assistance of special hand tools that he made for himself.
In 2002, Ingram met and befriended William “Billy” Lesane, the late Tupac Shakur’s first cousin. At the time, Lesane owned a record store in Stone Mountain, an Atlanta suburb. Ingram and Lesane eventually established the independent record label, 4ever Family Music. Most days, Ingram can be found in the studio, laying down tracks. His inspiration is gospel music, which inspires him to concoct rhythms with ease and confidence.
For Ingram, his path has led him to seek higher truths. “Once the initial shock of my incident passed, I decided that I would live a life defined by purpose, regardless of my circumstances,” he said. “My body was broken, but not my mind. I can deal with my body by doing those things that I know are correct. With paralysis, one key element in staying well is circulation. Each day I must incorporate activity to stimulate my circulatory system. Eating a well-balance diet is also important.” He also tries to stay positive emotionally. “So far, I have handled that with a simple formula: I am alive and God is showing me the way to roll with my life. I am blessed.” His strong spiritual foundation comes from family:
“I’m not rapping for tears. I’m doing this to reach souls,” he says, adding, “Rap is easy, because it’s expression.” Though he has enough tracks to release eight to 10 CDs, he says, “It is important to know how to master the business of it all. That is my challenge at this time—learning the business side of the industry.”
“My father, who is now deceased, was my rock. He was strict, but loving. When Mom needed help, he was right there. He taught me a lot about being a man, and how to survive. It’s ironic, because it was almost like he was preparing me to survive the shooting with all my thinking intact. Now, I really understand the importance of
These days Ingram, an Atlanta-based music industry trailblazer, writes, produces and raps. He also works with newcomers as well as established artists in the South.
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Chairkrazy in the sound studio mixing his latest music
having a positive male role model. My father was all that, and then some. “His father, my grandfather, was an ordained Bishop, and I credit him for the spirituality of the family. My younger sister, April, is preparing to go into ministry. So it’s still flowing.” He shares a special relationship with older brother, Prentess, as well. It’s his mother and grandmother that he credits with instilling in him an understanding of what really matters. That grounding has helped him in his marriage to his wife, Latrina, whom he says keeps him centered. She works as a supervisor with Family Intervention Projects throughout the metro Atlanta area; she is also legally blind. They make the relationship work by sharing daily experiences and maintaining a commitment to make honesty a priority. They definitely plan a family in the future. In the meantime, he mentors other people’s children, particularly young men who are, like he once was, vulnerable to the tug of the streets. “I have a lot of children that I have either ‘adopted’ or they have ‘adopted’ me,” he says, then adds, “it’s all about love.” Says Ingram’s soul mate, Latrina: “My husband gives the word ‘perseverance’ new depth and his determination is habitual and contagious.” Put another way: Marcus “ChairKrazy” Ingram is an indomitable spirit with the aura of success swirling all around him. by Patricia G. Pope Patricia G. Pope is the author of the award winning novel, Colored Waiting Room and a freelance writer. She lives in Powder Springs, GA. A sampling of Ingram’s music can be heard at myspace.com/chairkrazy
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or a dozen seasons, Laura Innes played ER’s Dr. Kerry Weaver, a tart-tongued surgeon with an unnamed disability that caused her to walk with a limp. Initially Innes, who is able bodied, thought little of that aspect of her new role. But playing the part over so many years and getting feedback from friends and peers who have disabilities, sensitized the actress to the realities they faced. Now, as a TV director, her increased awareness broadens her casting choices and motivates her to do a bit of advocacy when she thinks it necessary. Recently, ABILITY Magazine’s Chet Cooper and Pamela Johnson met up with Innes in Hollywood as she walked alongside Performers With Disabilities (PWD). Out in force, they were supporting striking members of the Writers Guild of America. ABILITY 41
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Pamela Johnson: We got you fresh out of the editing room, what were you working on? Laura Innes: I’m directing an episode of Brothers and Sisters. Chet Cooper: When you read for the role of Dr. Kerry Weaver on ER, did you know going in that you would play a person with a disability? Innes: Yes, when I read for the part, the character was described as having a limp and using a cane. She was written with that intention. I never asked John Wells—the show’s executive producer—but I heard it through the grapevine that when he was observing hospitals, he saw a doctor who had a cane and he thought, “Oh, that’s kind of interesting.” Johnson: You knew Weaver had a limp, but did they tell you the back story? Innes: No. When I asked, “Well, what’s her malady or injury?” they said, “We haven’t decided yet.” They wanted to keep it open, and not have it be something that was an issue. We discussed what kind of crutch or cane I should use, and I actually suggested the cuff crutch, because I thought with all the moving around and concerns with cleanliness, that a doctor wouldn’t always want to be grabbing onto a cane or setting it down. With a cuff crutch, it could always be on my arm, and if I was at a trauma table I could have it for support and still use my hands. So that’s how that choice was made. When I got the part and the character was described as having a limp, I didn’t really think about it in terms of the impact as a disability. Cooper: Do you remember getting any heat for being an able-bodied person taking a part that might have gone to an actor with a disability? Innes: I remember speaking to a good friend of mine, Nancy Becker-Kennedy, who uses a wheelchair. She and I had done a sitcom together and we got to be friends. When I mentioned this part I landed on ER, she was the first one who made me aware of the fact that there was a possibility that some people might be upset that the role was given to me. I hadn’t even thought about it at that point. Johnson: How long had you had the part when you two discussed this? Innes: Oh, it was early on. I think I was initially hired to do only six episodes or three episodes, and Nancy and I had just finished working together, so we were in touch all the time.
Cooper: I know Nancy; she’s a part of PWD. One thing they fight for is to get actors with disabilities to portray people with disabilities. Innes: Yes, it’s a complex issue, and I talked to Nancy about it extensively. And then we got into this whole conversation that basically went: Well, what if the character’s in a wheelchair, but the person’s actual disability is with a crutch? Should they not play the part in the wheelchair? For me, the prospect of playing Dr. Weaver amounted to: “Wow, this is such a great character, she’s so acerbic, she’s so smart, she’s so powerful, she’s so good at what she does, she’s funny, and, oh yeah, she has a limp… Johnson: One small aspect of who she was. Innes: As an artist I said,”Oh, what a great character!” when I spoke to Nancy and she said, “Wait a minute, did they bring in actors with disabilities to read for the part?” I said, “I never even thought about that.” And she goes, “Well, this is a big issue.” After that, I actually called John Wells, the casting person, and said, “Did you guys do sessions with actors with disabilities?” He said, “Yes, we did.” Johnson: So you were happy to have a part on a toprated show, and yet you were feeling a bit conflicted about it at the same time. Innes: Yes. Initially I thought, Oh, gosh, I feel really bad about this.” And then I thought, Hey, you know what? I got this part, and I’m going to make the most of it, and I’m going to have it help me evolve and make choices that help other people. After playing Dr. Weaver a while, and meeting more people with disabilities, I’ve come to believe strongly that it’s important to do casting sessions with people who are actually disabled. Now, as a director, because of my experience, I do that first. Like we had a character on ER who was deaf. It was a big part. So there was all this back and forth about Should we look for someone?… The guy had to be an African-American high school student who could be interpreted as threatening by a Chicago policeman. The officer arrests him on the suspicion that he’s a gang member. They treat him a certain way because they assume he’s being belligerent, when actually he’s deaf. It was a tall order, but we found a young man out of Washington, DC, who was deaf. As an actor, he was inexperienced, but somebody knew him. We ended up casting him based on this tiny little audition tape. He turned out to be fantastic. Johnson: You flexed muscle that you wouldn’t have had if you were in actress mode as Dr. Kerry Weaver. Innes: True, and I was just directing another episode of
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ER recently. The story line is very heavy, and features a father who was in a wheelchair; he’s concerned for his son who’s suffered a fall. It was a big part, and we used an actor with a disability for it, and that was a result of me saying: “We need to absolutely go down this road to the Nth degree before we choose an able-bodied actor.” So in those two cases—and then again recently on Brothers and Sisters—we picked an actor with a disability. On Brothers, there’s an actor named Alan Toy. We cast him as a Vietnam vet who uses a wheelchair. So now I’m very proactive about it. Cooper: It’s great that you’ve chosen to use your power for advocacy. Innes: On the other hand, I don’t think the rules are set in stone. I mean, I think Daniel Day-Lewis was amazing in My Left Foot. I think he should have played that part. But should he have gotten to play that part just because he’s a big star and it was a high-profile movie? I mean, is that where you draw the line? I don’t think it’s something that’s an absolute.
Laura Innes as Dr. Kerry Weaver
I think the bigger issue is that you seek out actors with disabilities for such a part first, and if you can’t find somebody that you think is going to really keep the quality or keep your intention, then you go to able-bodied actors. But I think you have to, in good conscience, go down that road. It’s difficult because there are more and more disabled performers who are available, but it depends on the part and the age; it’s extremely specific. That’s the point I’ve come to on that.
Innes: Right. It ended up being minimal. I think that’s the thing, people think accommodations are going to be a big deal, but performers who come in are ready to deal with certain issues, and if you just prepare them and somebody makes one phone call to them and says, “What kind of chair do you have? What kind of ramp do you need?” There are all kinds of guidelines for that. I mean, when I directed that recent episode of ER, we had to build a ramp to help Grant Albright get up to this observation room, but that wasn’t that big an expense. It’s very doable, you know?
Cooper: What are other battles that you find yourself waging?
Cooper: How can performers with disabilities get in, when the door’s so hard to budge?
Well, one is that it’s hard to convince producers and show runners that we need to bring people in who are just in the background, in the workplace. Choosing them has nothing to do with their disability. They just work in places the way we all work in places.
Innes: I would encourage people to just stick with it, work hard and stay in their classes, stay with their training, because nobody in LA works enough. So what happens is, if you don’t get called into very many auditions and you don’t work that often, when you do get called in, it’s such a big deal that you might not be primed to do your best. You’re going to be nervous.
That’s the harder sell for people, because they’re worried that it’s going to be a distraction, or they’ll ask, “What’s the audience going to think?” They’re going to think just what they thought about Kerry Weaver. Many people thought I was actually disabled. Johnson: It’s like the’50s: What will they think if we put a black person on TV! Innes: I’ve worked on a show that I won’t name where there were lots of discussions around performers with disabilities. They went like this: “Well, what are we going to do? We have to build a ramp and we have to get a special trailer.” But I was able to push things along by saying, “You know what? You need this kind of ramp and it needs to be this angle. It’s going to cost you X.” Johnson: The cost wasn’t that expensive, right?
Johnson: Makes sense. Innes: So I think almost more than other actors, performers with disabilities have to really be in class and keep their chops up, because unfortunately those opportunities don’t come along that often, just as they don’t come along that often for, say, women who are over 40, you know? The business is not receptive to people who don’t look a certain way, no matter what that is. Still, I think that people should just go for it and keep pursuing it. God knows things have gotten a lot better. But that person has to come into the room and basically prove everybody wrong. Like, “You need me here. I’m the only one who can play this part.” ABILITY 43
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L to R: On the set of ER— Innes along with John Stamos as Dr. Tony Gates and Shane West as Dr. Ray Barnett
Cooper: One of our health editors is a physician and she really likes ER. She wasn’t able to be here to ask you a question, but she wanted me to find out if the medical doctor who created the show, still has any involvement? She finds the accuracy of the show right on. Apparently, it’s one of the medical shows that physicians like.
Innes: Yeah, that’s exactly right! I remember a story from the first season, I wasn’t there yet, but I’ve heard that Noah Wyle worked such long hours and was so exhausted that one of the doctors gave him an IV to hydrate him. He had the IV in while he was working. (laughs) That sounds like abuse to me, but— Cooper: (laughs) I guess the motto is Keep working!
Innes: Michael Crichton wrote the pilot and was around a little the first year, but he’s no longer involved in the production. Cooper: Tell me about your other medical advisors. Innes: One of the reasons that the show functions at such a high level is that John Wells has always had ER doctors as producers and on the writing staff. There’s a small group of guys who actually went to film school and medical school. On the ER writing staff now, I think there are two physicians who are also writers and producers, and then we have three different doctors, one of whom is always on the set when we’re shooting. There’s Joe and Lisa who go through the script and sort of make sure it’s correct, and then there’s an on-set doc who works with the director before the shoot. During our prep time, we choreograph what the medicine is and what we need and how it’s going to play out and what the actors have to do, and then that expert is on the set with the director and working with the actors to teach them the medicine. They really pay a lot of attention to that. Cooper: So if there’s ever an accident on the set, you’re all in good hands. 44
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Johnson: Did you find continually leaning on the cuff crutch affected your body in anyway? Innes: After about two years, I had a bone scan and my doctor goes, ‘Well, the bottom of your spine is curved to the left,’ which is exactly where I raised my hip up when I walked with the limp. So it definitely affected my alignment. That being said, I don’t have back pain or anything. Johnson: That’s fortunate... When you left the show after 12 seasons, was it to go deeper into directing? Innes: Pretty much. Doing the show for that long was fantastic, but the character had run its course. I had tried everything I could imagine her doing. I never expected to stay that long, and I was very grateful to have been kept on, but at a certain point it’s not stimulating enough, and it’s time to try different things. My husband and I decided that if we were lucky enough to get to a certain point, we would change it up. And the directing played a big part in that, because I did have that as another work option and that was going well. I happily go back and direct episodes of ER, so one or two times a year I see everybody and hang out. It’s the best of both worlds.
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Johnson: Is ER where you got your first directing break?
Cooper: What drew you to the Writer’s Guild picket line the same day Performers with Disabilities were there?
Innes: That’s right.
Innes: I’ve gone out there periodically to show my support, but it was a coincidence that I was out there the day the performers came out. It was kind of funny. At first I wondered: Should I go? Is it gonna look like—?”
Johnson: About how far into your tenure on the show? Innes: I’m guessing it was maybe ‘99? It was a while ago. I did one ER, and it went well, and then Tommy Schlamme, who was the executive producer of West Wing, asked me to do a West Wing. And John Wells produces both shows. So John would use me on ER and West Wing.
Johnson: I’m playing a picketer who plays a person who has a disability? Innes: (laughs) Then I thought: No, I’ll probably know half the people out there, and it’ll be cool.
Johnson: They’re both kind of 12-ring-circus shows, you know? Innes: They’re both very challenging to a director because so much is going on, but they’re a lot of fun and very interesting. Cooper: Switching subjects a bit, do you do any volunteer work? Innes: You know what? I do some. I have two kids and I work quite a bit, so I’m not that good about doing my volunteer work. But I help out at my son’s school and I do a fair amount of work with bone marrow donors, that’s the kind of thing I speak up about. I have a daughter who was adopted from China, and a couple of the girls that we’ve come to know in our community of Chinese adoptees have been affected by various cancers that have been cured by bone marrow transplants. So we have worked in the past few years to raise awareness of bone marrow donation, to make people look at it as they look at giving blood. We’re trying to get everyone on the registry. It’s such a great thing, because when you give bone marrow and there’s a match, after two years you can meet the person who was your donor—if they’re open to meeting you. It’s pretty incredible to see these people meet, because one person’s bone marrow has literally saved the other person’s life. You can save a child’s life, a mother’s life... Getting on the registry is easy. It’s just a little cotton swab in your cheek, and then the actual giving of the marrow is uncomfortable, but sometimes it’s made out on TV to be this horrible, excruciating thing, and it’s not. I mean, definitely you wouldn’t choose to do it, but it’s not that bad, considering how much it could mean to someone else. Johnson: Do they give you a cookie afterwards? Innes: They give you a cookie! Johnson: See? That makes it all worth it!
TO THE BONE Since 1968, Bone Marrow Transplantation has been used to treat blood cancers (e.g. leukemia) or to replace bone marrow cells destroyed by chemotherapy or radiation therapy. The bone marrow (soft inner part of large bones) produces the different types of cells in our blood, including those that fight infection. Though chemotherapy and radiation therapy destroy a greater number of cancer cells than normal cells, it’s important to strike a balance between zapping the bad cells and protecting the good ones. However, this often limits the effectiveness of the treatment. But if doctors can replace a patient’s bone marrow cells with a transplant, then they can give more effective doses of chemo- or radiation therapy. The bone marrow cells from a donor—or sometimes from the same patient, taken during a remission—are given to the patient intravenously, like a blood transfusion. The hope is that they will replace the patient’s destroyed marrow cells and begin to make healthy new blood cells. Bone marrow from a donor is fraught with the same issues as any transplant: It must “match” or the recipient’s body will reject it. While some have described the harvest of bone marrow from a donor as a horrible experience, it really is not. It does require that a large needle be inserted into the hip bone, but it can be well-tolerated with local anesthesia. The risks are minimal and no hospitalization is required. Recent news regarding stem cells sheds new light on the future of BMT. Scientists now believe that adult stem cells swabbed from inside the cheek, instead of from an embryo, can be induced to become bone marrow cells. Since the recipient and the donor are the same person, the transplant will be a perfect match. Stay tuned! www.marrow.org www.nlm.nih.gov
Innes: Exactly. ABILITY 45
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PART 1
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icky James was well on his way to fulfilling a childhood dream of becoming a Supercross champion, when life took a drastic turn. Two and a half years ago, at just 16 years old, he was injured in a Motocross accident on the track. The blow to his T7 vertebrae left him paralyzed from his mid-chest down. Today at 19, he’s deftly navigating the new terrain of his life.
Mere days after the accident, James declared that he would ride again. But first he had to redesign his motorcycle. After he did that, he was determined to compete in the 2007 Tecate SCORE Baja 500, which he did. On the heels of those victories, he set his sights on performing a back flip on his newly modified motorcycle. He licked that too, and now has set his sights on NASCAR racing. In the meantime, he’s shifting out of his teen years into the higher gear of independent adult living. ABILITY 47
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‘Dude, you could make me some Nerf Bars,’ which are basically crash bars to protect my legs. He made it happen. Brad’s awesome. Cooper: Being in a chair, he knew exactly what you needed. James: Exactly. The bars used to go all the way underneath the bike, which was a little bit wider. But now it’s more streamlined. This is as simple as it can get. Cooper: How long did it take you to come up with the idea? James: About six months. But I started riding my smaller motorcycle just four months after I got hurt. I would get duct-taped to it, and ride around with buddies, like my friend Jason Lawrence. That’s when I knew I had to ride, so I’d sit in the garage and my dad was like, “If you really want to ride it, let’s do it now.” That’s when he got out the roll of duct tape and secured me to the same bike that I’d crashed on. At first, I just went up and down my driveway. But my hips were sliding off, so I knew that the seat was the key part that kept me on the bike. Everything else I’ve added is basically to go faster or protect my legs, like the electronic shifting gear. Cooper: Tell me more about the controls? How exactly are you shifting and braking? James: There’s a hand back brake where my clutch used to be, and I have an automatic clutch that’s centrifugal. I give it gas and it feeds the clutch out for me, and then I have an electronic gearshift—basically two little tabs with buttons that shift between gears, while engaging the transmission. And that’s about it for the motor. Cooper: You say “thumbs” plural, so it’s on both sides?
ABILITY Magazine, editor-in-chief, Chet Cooper recently caught up with James and idled alongside him for an hour or so to talk about his accident, his recovery and his plans for the future.
COOPER LOOKS OVER JAMES’ MODIFIED MOTORCYCLE… Cooper: Pretty nice, Ricky. James: Yeah. When I got hurt, I took it to my suspension guy and he was like, “Yeah, I know who’ll do it up for you.” He held on to it for about two months without doing a thing. “You know, I don’t really want to build you this bike,” he told me. He didn’t want to be responsible for me getting hurt again. Then I met Brad Meinzer through David Bailey, and I saw the downhill mountain bike he’d designed for paraplegics, and I was like, 48
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James: Yeah, there’s down shifting on the gas (throttle) side, and acceleration on the other side. So there’s only one button for me to push on each side. We modified that, along with the seat to keep me on, the crash bars to protect my legs, and the foot trays to keep my feet in place. That’s what it took for me to ride again. Cooper: So when you stop, you basically have to look for a tree to prop yourself up against or… James: Or my friends catch me. I have to have someone with me to load and unload my bike as well as to get me on it. I probably could get on it myself, but I have to have one guy to go out to the track with me in case I crash. Then he’ll come out and get me, or help me if I need to stop. He can catch me and put my kickstand down. I’m working on an automatic kickstand, where I push a button and it flips down. I’ve been working on it, but it’s not perfected, and like I said, at a Motocross track I don’t really need to stop. When I’m done, I’m done.
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NAVIGATING RECOVERY Cooper: Do you have siblings? James: I have two sisters; one is 24 and the other is 28. Cooper: How did your family deal with your injury? James: Afterwards, they were on the computer 24 hours a day, looking into treatment options and what life might be like after a spinal cord injury. They told me more than the doctors did. I’ve become really close with my sisters. They call me to hang out, and I love being with them and my two little nieces. My younger sister actually dated Jesse Billauer, the guy who started Life Rolls On, for about a year.
told us of some doctors who were on the forefront of stem-cell technology. My dad called up Hans. They talked for about an hour. The day I got hurt, he gave my dad a lot of confidence. He told my father, “Keep him healthy for four or five years and I’ll have him fixed.” I have an exercise bike that I use to work out my legs. I do that as much as I can. I do believe that there is a lot of potential with stem cells. Hand back brake, automatic clutch, electronic gearshift, down shifting on the gas (throttle) side, and acceleration on the other side.
Cooper: Before or after his injury? James: After. He’s been hurt for about 10 years. He came and visited me in rehab. Cooper: Small world. James: He came and visited me in rehab, and my sister sent him an email that said, “Thanks for coming to visit my brother,” and he was like, “Hey, are you single?” So they started talking and dated for a year or so. It was cool. They broke up, but I’m still good friends with Jesse and the whole Life Rolls On crew. Cooper: Tell me about your dad? James: He’s awesome. Cooper: It’s pretty cool that he’s dealt with his fears and still let’s you be who you are. James: He knew I was capable of riding again. I’m a pretty smart rider. I know what I can do and what I can’t. There are some double jumps out here today that I probably could have done, but it wouldn’t be worth it to push things too far. If I do certain moves, it’s going to hurt. Cooper: And yet you dropped it twice out there. James: Yeah, I crash probably once or twice every time I go riding. I push it just beyond the low level, and that’s what’s fun about it. You’ve got to scare yourself a little bit to make it fun. Cooper: Earlier I heard your dad talking about Christopher Reeve’s research doctor… James: His name is Hans Keirstead (see article on pg. 54), and he was working with Reeves. I was lucky enough when I got hurt that David Bailey—another paraplegic who was once a top racer and my trainer—
From day one, my dad has said: “Don’t worry about the cure. I’m going to do all I can to help.” He puts on a golf tournament once a year to raise money for Reeve Irvine, which does stem cell research at UC Irvine. My job is to do what I do, have fun and stay positive; my dad’s job is to get the cure. He feels it’s his duty. Cooper: He’s taken on a lot. James: Yeah, if there was a cure anywhere in the world, my dad would track it down. He would send me into outer space if there was a cure there. The U.S. is the best in terms of advances. The FDA is holding things up for now, but in the long run, they’re just making sure ABILITY 49
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everything is safe, and no other country has an FDA like ours. So the cure will probably be found here in the U.S. We agree 100 percent with Hans. He’s the guy who will have the breakthrough in terms of helping people recover from spinal cord injury. I’ll say it now. He will do it in the next couple of years. I’ve met Hans five or six times. My parents went out to lunch with him before he flew back to China to go do some research there. He’s gone to a lot of different countries. He has to be a politician to cut through everything, but at the same time he has to do the research. Cooper: So he’s lobbying for his research and performing it at the same time. James: Yeah. It’s amazing. He’s only like 35 years old. He’s a full-on surfer dude. He wears flip-flops into the lab. He’s so cool. I can’t stress how much I believe this guy will one day save my life. He invited my parents out to dinner, and I couldn’t make it. I was supposed to go, but I was having so much fun riding at the track. That was, a big, big dinner for me to miss, but there was a bunch of pros out riding, and I actually got my Alpinestars sponsorship that day, so I was like, “I’m staying, I’m having fun.” Cooper: They’re working really hard at the ReeveIrvine Research Center, and with new money coming in, things look promising. James: Yeah, in the next couple years, we’re going to see a lot of progress. They want someone who will put in the hours, and get spinal cord surgery to finally work. They’re looking really closely at me in terms of the whole breakthrough of stem cell technology. As young 50
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as I am, working out as much as I do, I’m in a good position to benefit from it. Cooper: Did he tell you how he’s going to do it? James: Step by step. And at the end, he’s said, “I have the cure, and now we just have to develop the drug. The research is done.” I’m thinking, That’s amazing. It’s been two and a half years. He told me, from the day I got hurt, four to five years. It’s been two now. The research he’s doing is going to be tried on humans soon. Hans says someone has to be injured two to four years for him to even do the surgery to prove that it was a chronic split spinal cord. He doesn’t want someone only a year into it, because people would say it might have come back anyway. Cooper: So they’re doing animals trials now? James: Yeah. I’ve seen rats up and walking only three months after their spinal cords were completely severed. Next, they plan to move on to primates. Cooper: You think they might be allowed to do human trials soon. James: Yeah. I’m pretty excited about the whole deal, honestly. Where I got hurt-the T7—only 20 percent or something like that get hurt in that section. The other 70 percent are injured in the cervical area, and the other 10 percent in the lumbar region. They want to do the surgery right where I’m hurt, because each section represents some aspect of mobility. There’s triceps, biceps, finger function. So if they do the surgery on a quadriplegic, that might mean more risk for them. Me, if I lose another section, it’s no big deal. I have seven more sec-
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tions before I start functioning with my arms. And that eliminates 70 percent of the people right there, because they’re injured lower down, in the cervical area. So that, along with what I’ve done in the past few years to keep positive and healthy… Cooper: So you exercise on a regular basis? James: Yeah, every week. I’m supposed to do it three times a week. Sometimes I do it five times, sometimes two. It depends. Cooper: Do you do any forced walking? James: Gait training? No. I have an RGI stem bike, a home-based program. I put 12 electrodes on my legs and it shocks them into pedaling the bike for me, which keeps my muscles from atrophying, improves blood circulation and helps with bone density. It’s a $15,000 bike. And then I have a standing frame that I use also for bone density. So that’s what I do. I also plan to start Project Walk. My spinal cord is split in half, and I know that there’s no rehabilitation out there that will get me walking again, but I just want to keep healthy for that stem cell technology. Project Walk is a rehabilitation center to get spinal cord injury patients to walk again. I want to go down there, where they have training professionals, so I make sure I stay healthy. Cooper: Is that project out of Miami? James: No, this one is in Carlsbad, CA. It’s around $100 an hour. I’m going to go down there once a week, just to make sure I’m doing the right stuff and to use some of their machines to do that training. When I first got hurt, I thought, “I just want to ride, be happy, keep my mind off being hurt.” I don’t think any 16-year-old should have to go through what I went through. A lot of people have and still will have to go through it, but it’s not very cool. So I focus on doing the more extreme stuff, and I love it. I love riding, dropping in the quarter pipes, sky diving, driving an Indy car— a bunch of extreme stuff that keeps my mind off my situation. When I’m doing that kind of stuff, things are almost cool. Cooper: It sounds like you didn’t go through the typical depression that usually follows a serious injury. James: I have awesome friends and family. I almost felt like if I was depressed, it was a disappointment to them. When a person gets hurt, everyone around them goes through it, too. I didn’t want to make their lives worse, so I tried to be positive. There’s no reason to get down or have a bad attitude. It doesn’t get you anywhere. Cooper: Prior to using a chair yourself, did you have any friends with a spinal cord injury? James: David Bailey. He was a Motocross trainer and managed some teams. He saw me out at the local track ABILITY 51
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when I was about 14 and offered to coach me. He got hurt 20 years ago. Cooper: So he uses a chair? James: Yeah. He was a world Motocross champion on the top of his game when he got hurt. It was the year before I was born. But I knew who he was, and I’d always seen him around. He’s a legend in the sport. For him to come up to me at a local track and say he wanted to help me out was amazing. I jumped on the opportunity, and he started coaching me. About two weeks before I got hurt, we were out at the track together, and my mom was like, ‘What if that happens to you?’ All I said to her was, ‘He’s a cool guy. I wouldn’t mind it.’ So when I got hurt, I thought, Damn, now I have to live up to my word. But David is so cool that I know it’s doable. Cooper: So seeing someone in a chair, doing whatever he wants in life gave you a sense that anything was possible. James: Yeah. When I saw him, I thought, “He’s awesome, he still gets to be in the sport, he’s making a living in Motocross.” At the same time, I never understood all the things that went along with being in a chair. The stuff you see is not even the hard stuff that a paralyzed person has to deal with. Not walking is only the half of it, the other half that people don’t see is just as hard.
place is supposed to be accessible. This is the first Motocross track I’ve seen with handicapped parking spots. That’s pretty sweet. But I’ve learned about all the ADA rules. I had a girlfriend who lived up north. I met her through one of my buddies who’s a quadriplegic. He and his girlfriend and my girlfriend came down and we were like, “Let’s go to the bowling alley.” I lived in Mission Viejo at the time. It’s something that we could actually do. You don’t think it’s possible, but we got the ball on our laps and just threw it directly down the lane. I’m a decent bowler. Cooper: Are you familiar with the IKAN bowling system. Basically you bowl from the ramp. James: No, I pick it up and just chuck it straight out from my chest. Even my buddy who’s quadriplegic can bowl. He pushes it off his lap, but he does it. So we’re like, “Yeah, let’s go bowling.” It’s something we can do. It’s awesome. We go out to the place and there are no accessible spots around. It’s three steps down to the bowling alley. You know how there’s the waiting room to the lanes? There was about a four-inch little lip so every time we bowl we had to go up this thing. Our girlfriends had to help us down the stairs, and then there are two steps up to the bathroom. It was completely not ADA. It sucked. Cooper: Do you have a carrer path? James: I’m still trying to figure out what’s next and what I want to do for a living.
Cooper: What kinds of things are you talking about? Cooper: What do you like? James: Bathroom care, hanging out with friends, everything you do in life. It’s harder to go to the beach. I second-guess everything now. Do I want to do that? Will it be worth it? There are so many situations I come across every day, where I have to adjust and find a way around it. It’s kind of a pain to do some things, such as going out on a boat; I have to be lifted into it. Having good friends helps a lot. They get me around. So, I’m pretty comfortable. I think that’s why you don’t see 90 percent of the paralyzed people out and about: They don’t feel comfortable with other people looking at them, doing the stuff they want to do. It’s kind of sad. You’ve got to be stronger than the other people and not mind them, just do your thing. It’s kind of awkward and weird for a paralyzed person to ride a motorcycle. But I love riding, and I don’t care. It makes me happy and I get enjoyment out of it, so I’m going to do it. Cooper: Do you know about the ADA?
James: I like motorcycles and I like sports. I would love to drive in NASCAR some day. I have a NASCAR truck right now. I’ve only raced twice. I’m going to try to get going in that and put as much effort into the truck as I’ve put into Motocross. I may be racing monster trucks soon, too. But I might do some speaking at schools and stuff like that. I don’t really like to talk too much about my story; I talk about it every day to my friends, so I’m not sure I want to do it for a career. But, every kid and every teenager out there has problems; I’m not the only one. Mine are just more obvious, but I’ve done quite well emotionally. So I might be open to sharing my story about overcoming my physical situation. I think kids could take away something from my story. I might just try motivational speaking. I could pick my own hours and talk to kids. I think it would be a cool deal. I have the opportunity. Cooper: It’ll mean lots of traveling. How do you like traveling?
James: Yeah. James: I love it. Cooper: Did you know what it was before? James: I had no idea, but I learned that by law every 52
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Cooper: Apparently you don’t have a problem with public speaking?
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The ABILITY House program, working with Habitat for Humanity, ABILITY Awareness and ABILITY Magazine, outreaches 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
James: I don’t. I think I have good morals and I’m a positive thinker. So if I could roll that into a speech, I think I could give a pretty cool one. Like I said, I have the opportunity; not many people have that, so I might as well try it out.
THE CRASH Cooper: Tell me about your motorcycle accident. James: It happened during the amateur motocross national race, when another rider-actually one of my best friends—came down and landed on my back brake pedal. There was a little cliff on the edge of the track, and I went into it head first; my bike came after me. Cooper: Do you ever talk to that friend any more? James: No. He came to the hospital a few times, but he never said he was sorry. I heard that he gets pissed if anyone even talks about the accident. I don’t want him to feel guilty. If he doesn’t want to say “sorry,” that’s okay. I’m the one who has to live with this every day. But I know he remembers it. I rode for Honda. He rode for Suzuki. We were awesome friends, but really competitive toward each other.
James: He says our lines came together, but I was in second place and went off the jump and I see a bike coming down on me. I had no control over it. It was the tightest part of the track, and he tried to pass me, which wasn’t smart. It was only the first lap, too. It wasn’t like it was the last one; there was no reason for it. Cooper: You were both in the air? James: Yeah. It wasn’t even a big jump, and as we landed, we collided. That’s when he hit my back brake pedal, and Newton’s first law of motion kicked in: Whatever is in motion stays in motion, I just kept going—right over the handle bars. It happened so fast. I didn’t even have time to put my hands out. I thought we were going to get tangled up in our bars and go down together, where I would’ve kicked his ass. But I went head first, and then the bike did a flip, drilling me into the embankment, breaking my back in half. My vertebrae went one way, and the rest of my spine just crumpled. They rolled me over onto a hard, plywood backboard and strapped me down. It was excruciating. I’m like, “Dude, is there padding or something?” Read PART 2 in our next issue
Cooper: Maybe he doesn’t think he did anything wrong? ABILITY 53
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A
s Tom Chappell, MD, the managing health editor of ABILITY Magazine, approached Oakley’s sportswear manufacturing plant last summer, he felt like he was entering the fantasy game Dungeons and Dragons. He found the Foothill Ranch, California, structure imposing. On the face of it were a pair of protruding conical orbs, and the whole building appeared to be held together by metallic bolts and stanchions. The lobby bustled with scientists, noted athletes with spinal cord injuries, television personalities and supporters of spinal cord injury research. Hans Keirstead, PhD, of the University of California at Irvine Reeve Spinal Cord Injury Research Center was the scheduled speaker. The topic was stem cell research for the treatment of spinal cord injury. The presentation included colorful photographs and video—taken through a microscope—of paralyzed experimental rats recovering from spinal cord injury, with the aid of stem cell treatments. FIXFor 20 minutes, Kierstead Delivered the fascinating findings from the research center. What we did in brief, Kierstead said, was establish a 42day protocol in which we simulated what happens inside a rat embryo when its in its mother’s uterus. During early development, many types of cells are being formed. But all of them start out as stem cells, tantamount to a blank canvas. None of these new cells have been assigned a specific task in the body as yet. One adult cell type that we are particularly interested in is called an oligodendrocyte [oh-li-GOH-den-droh-site]. It’s a 50-cent word for an important cell in the nervous system that supports the neurons. Neurons are nerve cells, the cells that carry messages from our brains to our spinal cords. These particular cells make an important protein called myelin. The oligodendrocyte cells wrap themselves around neurons and the myelin serves as insulation, much like that in electrical wire. We began to research what other scientists know about what stimulates the stem cells to become oligodendrocytes. We found that there were certain molecules that seemed to influence the process. We were thus able to obtain some of these molecules and put them on stem cells in just the right combination, at just the right time. Our lab is now able to start with stem cells and produce volumes of oligodendrocytes. One cell splits into two, which splits into four, which doubles to eight, and then 16, continuing on until they form little spheres; little floating balls in liquid. Initially, some of them look yellow, black or clear. What we did
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next was suck them out of the Petri dish, where they initially formed, one at a time. Ultimately we found that the oligodendocytes are the yellow ones. Then we developed a way to purify (or isolate) the yellow cells, removing the black and the clear ones. Then we developed a way to purify those yellow cells. We can place the purified oligodendrocytes on a sticky surface for growing cells, and they start spreading out. There are millions of cells. This is a method of achieving high purity of the cell type and a large volume of cells. We can actually tag them prior to putting them into animals with a little bit of iron and then use what’s called magnetic resonance imaging (MRI) to view the cells inside the animal to show that the cells are surviving and spreading up and down the spinal cord. Let me tell you about an experiment we did. The spinal cord of a rat is exposed surgically and then bruised with a blow from a small, blunt object to simulate spinal cord injury in humans. After the injury, the animal is unable to use its hind legs. It can move them a bit because the injury is not complete, just as is the case sometimes in humans. But it is dragging its belly, since there’s no consistent coordination between its front and hind paws.
‘Transplanted cells are enough to restore the animal’s ability to walk again. It’s awesome to be in the lab when it happens.’ After a spinal cord injury, many neurons—the cells carrying the information from our brain to our body—are lost forever. Others simply lose their insulating cells aka oligodendrocytes. Now those ‘wires,’ so-to-speak, cannot conduct ‘electricity,’ or signals from the brain, hence the paralysis. That’s why we took human embryonic stem cells and influenced them to become human oligodendrocytes that make myelin to protect those signals. When we transplant them into the rat’s injured spinal cord, it restores the function of the neurons that are still alive, but lost their insulation as a result of the injury. In the case of the rat, it’s enough to restore the animal’s ability to walk again. And it’s awesome to be in a laboratory when it happens. The rat is not playing soccer, but her belly is off the ground, she’s supporting her weight, she displays locomotion with coordinated front to back movement of her
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front and hind paws, her tail is up—that’s an amazing degree of recovery. [It is important to note that animals that are much lower on the biological hierarchy than humans, such as rats, have a much greater capacity to recover from a brain or spinal cord injury than humans do.] After we did this treatment, we went on to do safety studies to determine if the transplant might cause harm. We’ve since determined that the treatment in rats is not harmful to them. Moreover, the experiments were repeated in other laboratories around the world and confirmed our results.
‘This proves beyond a shadow of a doubt that human motor neurons that we’ve cultured from stem cells are functional. They make the muscle contract. That’s a tremendous breakthrough.’ California voters approved Proposition 71 in November of 2004 to raise $3 billion for stem cell research in California. Prop 71 authorizes state bonds to create the California Institute for Regenerative Medicine. The Institute provides funding to stem cell researchers at universities, medical schools, hospitals and research facilities. I can’t tell you how much flak our laboratory took for coming out with this treatment, playing a role in Prop 71, going to the senate on both the state and federal levels, and talking about it. We took so many hits, it was unbelievable. But then four other good laboratories from around the world repeated and confirmed our work, and all of a sudden everybody’s asking me to give talks. On the other hand, we know that nothing happens after transplanting cells into a rat with a chronic (or old) spinal cord injury. There is no recovery in the rat if too much time has passed since the injury. I didn’t ever expect it to. We designed it to work on subacute injuries—meaning up to a week or so after the trauma first occured. In a chronic injury you’ve got scar tissue. That is the problem in a chronic spinal cord injury that an acute (just happened) injury and a subacute (recent) injury does not have. So we had to design another treatment for chronic
injuries. What we decided to do was induce the stem cells to become motor neurons. Motor neurons make muscles move. So now, instead of focusing on the insulating cells (oligodendrocytes), we began culturing the actual working cells of the brain and spinal cord. Although we developed this specifically for chronic spinal cord injury, it turns out that there are other diseases for which this could be helpful, such as ALS (Amyotrophic Lateral Schlerosis) aka Lou Gehrig’s disease. Spino-muscular atrophy is another one. Nothing can be done for these diseases. People who have them lose the motor neurons that control breathing and pumping of their heart. Eventually they waste away and die. So we sought to generate motor neurons from stem cells, and we got lucky. In humans, the progenitor—or precursor cell that becomes the human motor neuron— can also become an oligodendrocyte, and we didn’t know this when we started. We just influenced them with chemicals to become a particular cell type. There are a number of chemicals that can tell this progenitor to either become an oligodendrocyte or a motor neuron. We can place them on sticky surfaces in culture dishes, and we can persuade them to become adult neurons, not the just the sheath cells (oligodendrocytes), but the actual neurons of the brain and spinal cord. Now, a motor neuron that we generate might look, smell and feel like your average motor neuron, but we need proof that it is also functional. The way that you prove this is you make it move muscle, right? That’s what a motor neuron does. In a person with a spinal cord injury, the muscles don’t work because the motor neurons have been destroyed. We had to coax the stem cells to become muscle cells. When you go to the gym and work out, your muscles get big because of the progenitor cells in them called myoblasts. They divide and make more muscle cells. Our lab poked our graduate students with a hypodermic needle and take some muscle cells out. Then we learned to induce the muscle cells mature into muscle fibers, and then we incubated our motor neurons with these muscle fibers. A sheet of human muscle that shouldn’t be contracting at all does because we put a sheet of human muscle with human motor neurons. This proves beyond a shadow of a doubt that human motor neurons that we’ve cultured from stem cells are functional. They actually make the muscle contract. That’s a tremendous breakthrough. It’s only the second time in the world that a high-purity population of any cell type has ever been developed from stem cells. ABILITY 55
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Now we move on to the animal experiments for those motor neurons that we developed from stem cells. What we’ve done is modeled the human cervical (neck) spinal cord injury by bruising the rats in the same area. Then we transplant our human motor neurons into the injury site in the rat. The brown-stained cells are our human motor neurons, and they’ve actually situated themselves where they should be. We’re extremely excited about this. But we’ve got a few more tricks to do. If you just put human motor neurons into a spinal cord injury, they’ll probably just sit there and do nothing. They might grow a little branch, but what you really want them to do is connect all the way out to the muscle that moves the thumb, for example. If you can make the thumb work again in a patient who is quadriplegic, that is a tremendous increase in useful functioning. From there, imagine if we could eventually get that whole arm, or eventually, the legs to work? But one thing at a time.
At this time, we theoretically have healthy functioning new motor neurons in the injured spinal cord that can connect with and control muscles in the body. We still have a big missing link, however. There is still no connection between the brain and the new motor neuron in that spinal cord.
So what we’ve done is devise more tools. In the muscle that we want to work again, we put an attractant so that the motor neuron will grow out and connect to that muscle again. Frankly, the sexiest thing that a motor neuron has ever seen in its life is the GDNF (Glial cell lineDerived Neurotrophic Factor). If you were a motor neuron and there was a GDNF in the parking lot, you’d be gone. (laughter)
Sharon in our lab has been doing a number of really cool experiments to address this problem. What she does is take brain cells that might normally connect to the motor neurons in the spinal cord and put them in a Petri dish. If she just leaves them there, they grow little branches. But if she adds the substances produced by our human motor neurons, they grow much faster. We’ve identified a number of molecules that our motor neurons release, which cause brain cells to branch out and grow.
‘When we transplant our motor neurons, they are able to induce the lost branches of the brain cells that come down the spinal cord to start growing again. Eventually, the brain cells can then, theoretically, connect with the new motor neurons.’
That’s great news. It means we got lucky: When we transplant our motor neurons, they are able to induce the lost branches of the brain cells that come down the spinal cord to start growing again. Eventually, the brain cells can then, theoretically, connect with the new motor neurons. Since these neurons have the potential to reconnect with the muscle, the circuit is theoretically complete: the brain should be able to control the muscle as it does in a normal situation.
Our team started using viruses. Viruses can take other genes into their own. That’s what they do really well. However, to effectively use a virus in an animal or human, it has to be damaged first, so that it can infect a cell only one time before the virus itself dies. Otherwise, it will multiply and cause infection. The virus inserts itself into the gene of a cell that we choose. In this case, we want the gene that makes the GDNF in the muscle that we want our motor neurons to connect to. 56
Then we enhance the growth of the motor neuron by giving the patient, hypothetically speaking, a drug that causes the motor neurons to grow much more than they normally would. The growing branches of the motor neurons are then attracted to the GDNF in the muscle. The idea is to get the motor neurons to grow to the muscle cells. (The virus is no longer there, because it’s died.) Only the muscle cells are making the GDNF because the virus put the gene for GDNF into the DNA of the muscle cell. The hope is that a connection will be made that will allow impulses in the motor neuron to move the muscle. That’s the project that’s going on now.
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At this point, you’re thinking: ‘This is not so tough.’ Ah, but the problems have only begun. We’ve developed the experimental treatment and we want to get it into people with spinal cord injuries, but we can’t. All the experiments have to be repeated by other researchers and they have to get the same results to prove that what we did wasn’t a fluke or faked. But what laboratory wants to repeat someone else’s work? They’re busy doing their own thing. Besides, we already have the glory of publishing these results and a grant to continue the work. So now we have to raise money to pay other scientists to repeat our work. That’s been very hard. After that, safety tests have to be done to make sure the cells don’t migrate away from where they’re supposed to
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be, make sure that they don’t form tumors, or do anything to the blood or cause pain. We’ve done these studies for the oligodendrocytes, and we’re sure that none of those safety concerns exist. Now we’re doing safety tests on the motor neurons. This is all in animal models, of course. To complicate matters further, there are tremendous debates. A lot of scientists say, ‘Slow down. Do more experiments. Show me that it works in several animal models.’ We have to balance that against the urgent need to get the treatment to humans. If we know it’s safe in rats, then why should we be required to do it in cats and dogs and pigs and monkeys, waiting five years per species? How do we balance the information we’re gonna get from continuing to study various animals against the need of getting to patients with spinal cord injuries sooner? Following the presentation, Jamie Little, action sports and motorsports reporter for ESPN, ESPN 2 and ABC led an Q&A with MotoCrossriders and others in the audience with spinal cord injuries. The group included David Bailey and Ernesto Fonseca, both former MotoCross champions. Little: David, you’ve been paralyzed and in a wheelchair for 20 years. You’ve heard and seen it all. I know you had pretty much closed the door on the whole idea that you would ever walk again, but I heard recently that you changed your mind? David Bailey: Well, I can see Hans is on top of this. Most doctors say it’s impossible for people with spinal cord injuries to walk again, but he’s not taking no for an answer. He’s pressing on. He’s got a great team. They’ve made progress and accomplished what Hans told me he would back in 2001—doing stem cell injections into people and getting drug companies involved. Everything he said he was going to do, he’s done. He’s proven to me that he’s not like some of the physicians I’ve spoken with since I first got injured. They keep talking about treatment being five or ten years out. So I had put it on the back burner. Way back. Not only did I think it was not possible for this to happen in my lifetime, but if it did, I’d be too old to benefit from it. Now I know I’m going to see this happen and affect my life. And the funding isn’t nearly as expensive as I thought it would be. I figured there would be a lot of resistance, or people saying, “We need $10 million to do this.” Little: This is all new to Ernesto. He was injured about a year and a half ago. Ernesto, please put into perspective what life has been like since you had the accident. What would it mean to you for stem cell
treatment get off the ground in the next few years? Ernesto Fonseca: Early on you think that you’re going to be able to find some doctor or machine or medicine that’s going to make a difference. That’s the fallacy of this injury. People think if you’ve got a strong will or a lot of resolve or just so many other things in your life, that you’re going to be able to make a difference. The truth is that there is no therapy, there is no doctor, and there is no machine that’s going to help.
‘The number one cause of spinal cord injuries is automobile accidents. So the odds are that somebody we know is going to be affected by this. Wouldn’t it be nice if there were some form of treatment to address the effects or turn them around?’ Hans mentioned loss of bowel function. He mentioned loss of sexual function. Imagine when we leave here tonight that these things and many others are lost for you for the rest of your life. That’s a tough one to swallow. So you see me doing the Iron Man, hanging with Ricky James, riding a motorcycle. I still have a good time. I’ve adjusted, but behind the curtain it’s difficult. The number one cause of spinal cord injuries is automobile accidents. I’m pretty sure you all drove here tonight. So the odds are that one of us or somebody we know is going to be affected by this. Wouldn’t it be nice if there were some form of treatment to address the effects or turn them around? Little: Ernesto, you were recently introduced to Hans and the breakthrough that hopefully is right around the corner. Talk about the impact your accident has had on you. Fonseca: I remember it like it was the other day. The moment I crashed, the first thing that came to my mind was: I don’t want to be in a wheelchair. I knew it as soon as I was on the ground. I looked over my left shoulder, and I think I said to one of the guys, “I’m done.” That was the thing that I was most scared of at the time. It’s hard for me to believe it’s going to be better at home, and it’s hard to see my wife dealing with so much stuff. I like to think that someone or something out there might be able to help us. ABILITY 57
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‘Research happens faster when the dollars flow. That’s just a simple equation. That’s why I moved here to do research. That’s why we’ve gotten so much done in such a short time.’ Little: Dr. Keirstead, obviously there’s been a lot of progress with the treatment for acute injuries. What is the goal once you start trying to treat the chronic cases? Keirstead: We designed the motor neuron treatment specifically for chronic cases: People who have been paralyzed for years or decades. I would expect the result of this treatment to be that every single moving muscle group in the body would be re-enervated and connected with nerve cells all to the brain, and that they would be under the control of the injured individual. At first we’ll try to regain control of one particular muscle that’s critical to daily function, to see if the treatment really works. And then we’ll get into all of the rest of the muscle groups until we can restore all of the things that a person really wants in order of priority, including bowel, bladder and sexual functions. We can theoretically seed the muscles that control these areas with attractants to have the motor neurons go there. So it’s going to be a series of steps. We’re actually working with groups of scientists and physicians overseas to recruit huge numbers of injury victims so that we can get through the early stages of treating just one muscle at a time, until there are cases where we are treating 20 muscle groups at a time. The challenge we have is this middle ground that we’re currently on. For example, when this thing is ready for human testing, California Stem Cell is already waiting to pay for the trial. Once you get to work on patients, companies want in on it. It’s the pre-clinical research, laboratory research, that we’re fighting really hard to fund right now. Little: Talk a little bit more about the funding and why David and Ernesto brought everyone here tonight. We all know that thankfully Prop 71 passed. There’s a lot of money available in the state of California now for research grants. But how much money is available and how is that money regulated? Why can’t it be used for what we’re trying to do? The second part of my question is regarding the time frame in getting to human treatment. How long would it take with the normal flow of money, versus if we were able to leave this room tonight with $1.5 million? What would that do for the timeline? Keirstead: Funding agencies wish to be associated with early discoveries. Their job is to fund laboratories doing this kind of research. Who decides what research gets 58
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funded? It’s groups of other scientists that participate in what are called peer-review bodies. These scientists review other scientists’ research proposals. They meet several times a year, and are directed to fund those studies that are a scientific novelty. But after something has been discovered, government agencies don’t exist to put money into development. It’s not their purpose. So raising the funds to actually get it from the point of discovery into the hands of a company that’s going to pour tens, possibly hundreds of millions of dollars into it is the trick. The average cost of a biological pre-clinical (before it can be used in humans) project is $1 billion to move it from discovery to market. We don’t have to raise that, thankfully, because there are companies out there that will take it on, because they can make money from it. They deserve to, because they’re making the investment to bring new discoveries to the market, where they’ll be available to all who need them. It’s a fact that research happens faster when the dollars flow. That’s just a simple equation. That’s why I moved to the U.S. to do research. That’s why we’ve gotten so much done in such a short time. We’ve been successful in attracting discovery research grants. If you’re asking for a particular timeline, how fast can we get there, I can’t give you a solid answer. We’re not gonna know the outcome of our safety study before we do it. If we run into a problem, we have to tweak it and do it again. If a study takes six months and we nail it right the first time, it will take six months, but we might screw up and have to repeat it. That’s just the way science goes. Something might happen that we didn’t understand. But then we’ve got to raise the grant money again and experience another delay. The path from here to patients with the motor neuron treatment is pretty much laid. Geron Corporation did it using our laboratory research. They have picked up our oligodendrocyte program and poured millions of dollars into developing this treatment. [Geron Corporation develops and produces biopharmaceuticals to treat cancer and degenerative diseases, including spinal cord injury, heart failure and diabetes. It is touted as the world leader in the development of human embryonic stem cell-based therapeutics. The spinal cord injury treatment Dr. Kiersted has developed is anticipitated to be the first product to enter clinical development.] They’ve done pre-IND (Investigational New Drug) meetings and publicly announced that they are going to go to the FDA for the final IND approval by the end of this year. (An IND or Investigational New Drug permit must be obtained from the FDA or Federal Drug Administration before an experimental treatment can be used in experiments on humans in this country. This is an arduous process.) Clinical trials, in other words, experiments on humans with subacute spinal cord injuries should begin some time in 2008.
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The first human embryonic stem cell clinical trial in the world is going to pave the way, because no such trial has ever been done before. Scientists and doctors don’t know how to do spinal cord injury trials, because they’ve never been done, so we have to learn. Similarly, the FDA didn’t know how to approve a spinal cord treatment using stem cells. Everybody’s had to learn. Geron has basically taken a machete and cut a path through the jungle and laid a road so that others can now follow. Subsequent stem cell treatments are going to be able to drive on that road. The FDA is going to require us to treat Infantile Type I Spinal Muscular Atrophy first. This is a disease in infants that causes all of them to die before one year of age. They want us to start with that population because we can’t do harm to it with experimental treatment; there’s nothing to lose. We’ll have to show that our treatment is at least safe in that population first. Then we’ll still have much more to do before we try it in patients with spinal cord injuries. I can’t tell you precisely how long all of this will take. Audience Member: Hans, I once asked you how you got into the field and why you were doing what you do. Your response, without a split second hesitation, was, “When I was a teenager, maybe 13, I decided it was going to find a cure for spinal cord injury.” In 2000, you moved down to California from Vancouver. This work is considered by many to be a dead end, a research dead end and a career dead end, yet you still want to do it. Would you speak a about your dedication to this cause and this research? Keirstead: I have always felt that spinal cord injuries are treatable. I have been shocked and amazed that people don’t believe it and I think now we have proven that there is potential treatment. We now have several laboratories around the world that have shown that there are several different potential treatments. The views have changed over time. I don’t know exactly what the source of my stubbornness is, but you’re right, I’ve had it for a very long time. I’ve gained a lot of faith and support from everybody around that says, “Keep going.” Most of it comes from my students, staff and postdoctoral fellows who keep coming to me the right answers. Audience Member: As individuals can we donate money to build this fund? Ricky James, Sr.: Maybe I can answer that. I think there’s really three basic things that all of us can do. One is create awareness of this situation and the work Hans is doing. Two is to build relationships with people who have the ability to give. And three, generate widespread support for this. UCI has a foundation. This foundation is attached to the university and directly to Hans Keirstead’s work. We’re looking for people who are willing to fund this kind of work. We can set up one-on-one meetings in Hans’s lab. We’d love to give tours of the facility if anyone would like to do that. If there’s more information you need to make the donation, we can give you the answers. Audience Member: Is there a way to ensure that dollars go directly to research? James: Yes. All you need to do is write, “Keirstead Lab, unrestricted” with your donation and Hans can use it for research. All donations are taxdeductible. After the Q&A, the room hummed with the excitement of hope created by the presentation. With any luck, wealthy philanthropists in the audience grabbed donation packets on the way out the door and made good on their intentions. www.uci.edu
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his guide is for applicants who may need to discuss a disability-related job issue in an employment interview. I’ve written it in an easy-to-follow, question-and-answer format. My hope is that it will help qualified persons with disabilities take advantage of more employment opportunities, help employers make more informed hiring choices, and reduce the level of discrimination and litigation that has been associated with the Americans with Disabilities Act (ADA).
T
your need for the accommodation and obligates them to consider it.
QUESTION: What are the benefits of bringing up the subject of my disability in an interview?
QUESTION: What is a reasonable accommodation?
ANSWER: When it is done correctly, the main benefit is that it can help you get a “reasonable accommodation” to do the job, if you are otherwise qualified for it. Bringing this subject up to employers informs them of 60
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Keep in mind that you don’t want to make a bigger deal out of it than it really is. The main focus of any interview is who you are, what you can do and why the employer should hire you. The issue of disability and need for accommodation does not change that in any way.
ANSWER: It is some change in the job or the interview/evaluation process that takes into consideration your disability-related job limitations and either enables you to do the job or to be properly and fairly evaluated for it.
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In the interview these accommodations could be as simple as providing a sign-language interpreter for someone who is deaf or hearing impaired. It could be giving more time for someone to complete a test if they have a learning disability, or assisting someone to fill out an application if they have cerebral palsy and cannot do it on their own. On the job, an accommodation could be changing the work schedule for someone who needs medical treatments, acquiring equipment such as a blinking telephone or TDD for someone who is deaf or hearing impaired, or changing the way that work is traditionally done, while making sure that it does get done. You should study what the ADA says about reasonable accommodation. One important thing to remember is that an employer may be obligated to provide an accommodation only if it is not an undue hardship on the business to do so. Reducing performance standards below that of other employees is not considered to be a reasonable accommodation. If an accommodation will not allow you to perform the essential functions of a job, then you are not qualified for the position. QUESTION: How can I determine if I need a reasonable accommodation? ANSWER: You should consider these two things: 1: What are the essential duties of the job for which I am applying? 2: Does my disability interfere with my ability to per form these functions satisfactorily? Your job counselor or placement professional should be able to tell you the essential functions of the job to which he or she is referring you. Essential functions are those that are important and fundamental to the job, not those which are incidental. If the person placing you does not know the job’s essential functions, then you and your counselor may be able to speculate based on general knowledge of the field or vocation. In this way, you may be better prepared. But keep in mind that each employer may want a job performed differently, and a job’s description can change from employer to employer, and even from department to department within the same company. When in doubt, ask what the essential functions of the job are. You may have to decide if any accommodations will be needed and when would be the best time to discuss them. Working with the placement organization, you should be able to determine exactly which accommodations you would need. Applicants who inform employers that they will need a
reasonable accommodation do themselves and the employer a favor. QUESTION: What if I cannot do one of the “marginal” functions of the job? ANSWER: If you cannot do a marginal function because of your disability, then the employer has the option of accommodating you so that you can do it, or “forgiving” you the function, which means not requiring you to do it. The employer may not consider your inability to perform the marginal function in the hiring decision. However, if your inability to perform the marginal function has nothing to do with your disability, then the employer can consider it as part of your qualifications, and evaluate your inability to do it as he or she would with any other applicant. Example: If being able to drive a car was a marginal function of a job and an applicant could not drive because he or she had epilepsy, then the employer could not hold it against the applicant. If the applicant could not drive simply because he or she never learned to drive, then the employer could consider it as a concern for evaluation in the hiring decision. Therefore, when it comes up in an interview that you cannot do a marginal function of a job because of your disability, it is important that you make it clear that the inability is disability related, so the employer will not hold it against you in the employment decision. QUESTION: What if I feel that the employer does not have a right to know about my disability? ANSWER: An employer is prohibited from making disability or medical inquiries or examinations of an applicant in an interview. They may not ask about current or past medical conditions and, unless a job is offered, may not have an applicant submit to a medical examination unless all applicants who receive a conditional job offer for that position are required to have the same examination. You should keep in mind that there is a difference between your “disability” and any disability-related work limitations. Information about your disability includes: its definition, how you acquired it, how it affects your life, its prognoses, any medical treatments, etc. Employers generally have neither the right nor the need to know these things. Disability-related job limitations and your need for accommodation is another issue. If you request a reasonable accommodation, or if the employer cannot evaluate how you can perform the functions of the job with your disability, then that information might be ABILITY 61
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needed by the employer to properly evaluate and accommodate you.
to see the small print,” the issue of your disability has been raised.
The information the employer should be given should be limited to what is called the job-related “manifestation of the disability.” Put more simply this means how it affects your ability to do the job. You can discuss this aspect of your disability with the employer without revealing the more personal aspects of your condition.
When the employer questions something in your background or employment history that is only explained by your disability, the disability issue is raised.
Example: The employer might have the need to know how the applicant who uses a wheelchair will perform some of the job functions while using the wheelchair, and whether the applicant will need a reasonable accommodation to perform those functions. At the same time, the employer might not have a need to know why the applicant is in a wheelchair, the nature of the injury or illness, the medical prognoses of the condition and how the disability affects the applicant off the job. If you feel uncomfortable about an employer knowing anything about your disability, it is your right not to discuss or disclose it. But remember, the employer only has the obligation to accommodate known disabilities. Refusing to assist the employer with information about your abilities, limitations and need for accommodation only hinders the employer’s ability to successfully evaluate and accommodate you. Ultimately the decision is yours, but the question is, “Are you doing everything you can to maximize your employment potential and help an employer hire you?” QUESTION: When does the issue of my disability come up in an interview? ANSWER: While the employer does not have the right to make general medical inquiries of applicants, employers do have a right to ask an applicant if they can perform the functions of the job for which they are applying. If an employer asks you if you can perform a function that your disability does not permit you to perform, you can answer that you are unable to perform that function. The employer may then ask you “Why?” which naturally raises the issue of your disability. Example: The employer asks you if you can lift a 50pound box from the floor to the table repeatedly and you say, “No.” The employer asks, “Why?” and you reply, “Back surgery.” Suddenly, the issue of your disability has been raised within the context of a proper interview.
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Example: An employer questions an applicant about why the worker left his or her last job and now wants to change fields. The applicant replies that he or she was injured on the job and can no longer do that kind of work. Thus the issue of the disability is raised. When the disability is obvious to the employer and causes reasonable concern about the applicant’s ability to perform the essential functions of the job, the employer may question the applicant about his or her abilities. Note: The ADA allows the employer to do this as long as the inquiries are strictly job-related. Example: An applicant comes in who has had an arm amputated. The employer does not see how the applicant can deliver heavy or awkward loads on the delivery route. So the employer asks the applicant to explain or demonstrate how he or she would do the function. The problem is that many employers do not understand the ADA and are afraid to pursue even valid questioning without support and encouragement from the applicant with the disability. Some employers know the law but are afraid of offending or insulting a potential employee. This creates a problem for both the applicant and the employer. Applicants who help the employer solve this problem are more likely to be hired than those who do not. QUESTION: How do I know whether to bring it up or not? ANSWER: The ADA does not require, restrict or recommend to applicants with disabilities when, if or how to bring a disability up to a potential employer. The following opinions are based on extensive experience in developing jobs for persons with disabilities. If the disability will require the employer to provide a reasonable accommodation, the applicant should bring it up, explaining the nature of the accommodation needed and how it will enable the person to perform the job effectively.
If you can perform a function but need an accommodation to do so, the need for the accommodation raises the issue.
Example: An applicant who is blind requires a “talking” computer to do word processing. The applicant informs the employer of the need for this accommodation, the nature of the required equipment and details of his or her past performance using such equipment.
Example: If an employer asks if you can proof documents and you reply, “Yes, but I will need a magnifier
If the potential employee has a disability that will not require an accommodation but is visible, and the average
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employer would have reasonable concerns as to how someone with that disability would perform the job functions, the applicant should bring it up, explaining how the functions in question will be performed.
subject and advise the employer that your counselor or placement professional is available to answer any questions, as well as to provide the employer with any needed assistance.
Example: An applicant has three fingers amputated from his or her dominant hand. The applicant needs to be able to type and take written messages. He or she has learned to both write and type without any accommodations, but since the employer will notice and probably be concerned, the applicant brings it up explaining or demonstrating how he or she can perform those functions.
Whatever you decide should be done with the advisement and cooperation of your placement or job-placement agency.
If the disability is not obvious and will not impact the job’s performance, the applicant should not bring it up, as there is no need to discuss it. Example: An applicant has been treated for depression. He or she is currently on medication that controls the depression, so there is no effect on job safety or performance. Again, there is no reason to bring it up. QUESTION: How do I bring it up? ANSWER: First, present your qualifications for the job. Focus on your ability to do the essential functions of the position. Next, bring up the functions for which you will need a reasonable accommodation. Do not focus only on the “need” for the accommodation but also stress the resulting productivity and effectiveness of the accommodation to allow you to perform the function.
QUESTION: What does my job counselor need to know? ANSWER: Interesting enough, job counselors need to know what the employer needs to know: Your abilities and qualifications, your job-related limitations and potential needs for accommodation. Basically, they will be using the same standard for referring you to an interview that an employer uses in considering you for the job. With your help they can be of great assistance to you by helping to identify the functions of the job you want, requesting any reasonable accommodations you might need, and “coaching” you to present yourself and your abilities in the best possible light. As a person with a disability, the ADA represents a big change and a new world for you. It’s also a big change and a new world for employers and placement organizations. The best thing you can do for your placement counselor and yourself is to be honest about your vocational goals, be unafraid to dream big and pursue your dreams, while sharing them with others.
Stress your ability, not your limitations. Would it be better for a person with a back injury to describe themselves as someone who cannot stand for more than an hour or someone who can stand for up to an hour? Both describe the same condition but the latter is much more positive because it describes what the person can do, not what the person can’t do.
The ADA may unlock doors that had been locked in the past, but it is still your responsibility to knock on them, open them and walk on through. The most important factor in your job search is you. Good luck and good hunting!
Be ready for the subject to come up in the interviewer’s questions about qualifications and abilities. Be ready to respond with your explanation. If the subject does not come up, then bring it up near the end of the interview. Remember, remain positive.
This article was adapted from Working with People with Disabilities in a Job Placement Job Retention Environment
QUESTION: What if I want my counselor or job developer to bring it up for me? ANSWER: Then ask them to. But before you do, remember that it is generally more effective if you bring it up yourself. It sends the employer a message that if you are hired and problems arise, you will be an active and effective partner in solving them.
by Richard Pimentel
Pimentel’s Publications include: • Developing the New Employee: A Trainer’s Guide for
Retaining and Enhancing a Diverse Workforce
• Return to Work for People with Stress and Mental Illness • The Return to Work Process a Case Management Approach • Windmills Trainers program, Hiring and Working With People
with Disabilities
• What Managers and Supervisors need to Know about the
ADA
• The Workers Compensation ADA Connection www.miltwright.com
If you do not feel comfortable discussing the details of your need for reasonable accommodations, or do not wish to talk in detail about them, then you might bring up the ABILITY 63
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take action to make it a reality for ourselves,” said Duncan Wyeth, who is both the executive director of the Michigan Commission on Disability Concerns and vice chair of the UCP board of trustees. “We are moving forward,” he added, “and not allowing external forces to ‘dis’ our ‘ability.’” In October, UCP released the primer, The State of Disability in America: An Evaluation of the Disability Experience by the Life Without Limits Project, a 65page book that includes chapters on rights, healthcare, education, employment and housing, as well as personal stories and tips on organizing for change. Disability rights advocates and trailblazers also contributed their informed insights to the volume. CAN WE TALK?
The last half of the 20th Century was a time of enormous progress for Americans with disabilities and their families. Despite the improvements, however, many people with disabilities still face pervasive poverty, joblessness, forced institutionalization and needless dependency. As a result, they have less hope for the future than before the passage of the Americans with Disabilities Act (ADA). Moreover, 17 years after the ADA, advancement towards first-class citizenship for Americans with disabilities has come to a virtual standstill. Unwilling to accept “what’s not right” about disability in America, UCP initiated Life Without Limits (formerly the Big Sky Project) led by Tony Coelho, a former congressman and former chairman of the board of the Epilepsy Foundation of America. The central aim of LWL is to create a new vision for the future for individuals with disabilities, to increase public awareness about the challenges that lie ahead, and to develop strategies, initiatives, programs and policy for a brighter tomorrow. After we assessed what is yet to be accomplished within the disability movement, our next step was to hold a series of conversations between UCP affiliate leadership, staff, families, public policy experts, disability advocates and corporate leaders. We posed the same question—”What’s Not Right?”—to these focus groups. We also created a “focus group in a box” kit that we sent to hundreds of organizations nationwide, so they could host sessions and email or fax us back the results. This way, thousands of people could take part in the conversation. Their feedback led to the creation of a Custom Forecast Map, developed by the Institute for the Future (IFTF), of what we anticipate will be future trends. Over the next decade, we believe these developments not only will affect people with disabilities, but everyone. During several visioning sessions last spring, UCP put the map center stage at an Orlando meeting of 400 key leaders. The event was webcast to more than 125 sites
Dr. Bob Johansen
in the U.S., Europe and Afghanistan. The objective was to glean what might be the best approaches to achieve the most favorable outcomes. Presented by Dr. Bob Johansen, an IFTF distinguished fellow, the session highlighted the waves of change that will shape the lives of people with disabilities over the next 10 years. In the process, we came up with not only new terminology that expands the way in which we talk about disabilities, but also a glossary that includes our future language. HEADLINE STORIES
This language was incorporated into the Custom Forecast Map, which became the basis for six ‘headline stories.’ They look at current and coming scenarios that will help set the agenda for strategy and policy. • X-People—In the near future, for example, people with limited mobility will be able to put on the HAL-5 exoskeleton suit. Fired by a 15-kilogram battery, it detects muscle movement through electrical signal flows on the skin’s surface, and then it amplifies them to help people who have limited mobility climb stairs or lift heavy objects. • Lightweight Infrastructures: In this scenario, a smart device could reroute around brain and spinal cord damage to help restore lost functions. • Group Economy: Technology can help us belong to communities throughout the world, network and conduct business, regardless of our physical abilities. • Sense making: A person caring for a friend with a disability or an elderly relative at a distance, for example, might get a call from a smart-home refrigerator, notifying them that it hasn’t been opened today.
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• Transformational Geography: Centralized call cen-
ters with global reach, for instance, create career
opportunities for people with disabilities, regardless
of their mobility level.
• Sustainable Communities: As cities grow, urban
agriculture could double to produce more than 30
percent of the food we eat.
Michelle Bishop participated in the visioning session
and observed that: “The Life Without Limits Project is
an important step for the disability community, which
tends to focus on the past and work reactively.”
Bishop, who is the Missouri Disability Vote Project
Organizer for Paraquad, added that LWL can serve as “a
forum for people with disabilities to start thinking
proactively about what they want to see happen in the
next 10 years, to think about what they as a community
want to be and to figure out how to get there.”
This will have different meanings for different people
and different organiza-
tions. For UCP and its
partners, it encompass-
es the following six
“elements” that will
likely be relevant to
any progressive vision
of the future for people
with disabilities:
Believable Hope for the Future • Energy comes
from hope
• The direction we
take must be guid-
ed by the human
spirit
Navigating the World Across Generations • Use tools to con-
nect and include everyone because all ages and all
people need to feel empowered
• Form partnerships and alliances that transcend tra-
ditional boundaries such as the “generation gap”
Universal Access • Access and accommodation for everyone • Aim not just for physical access, but for access to
everything that improves quality of life
Agile, Potent Networks • Link people in multiple networks • Network communities and individuals • Leverage virtual worlds Meaningful Employment 66
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• Create opportunities for everyone to be engaged • Use technology to expand possibilities Community Not Government • Let government follow initiatives that come out of communities and networks • Go beyond just dividing up the “pie” KEY PARTNERSHIPS
As part of the public launch of LWL, corporate leaders, UCP staff and nearly 20 members of Congress convened at a luncheon briefing at the Capitol to discuss the initiative and its implications for the future. LWL has also benefited from strong partnerships with such healthcare organizations as Anthem, WellPoint, and Alegent Health Care. United Cerebral Palsy and its affiliate network have embraced the premise of LWL in many current programs and are working with business and private-sector coalitions to incorporate projects that reflect the ‘six elements’ vision. Online community forums, populated and owned by people with disabilities, along with families, friends and advocates are another means of achieving a unified voice that has the strength to enact change. These networks provide a unique opportunity to work with LWL partners to find solutions that are financially, socially and mutually beneficial. “The Life Without Limits Project is all about enabling all people, with or without a disability, to live full, independent and productive lives,” said Stephen Bennett, president and CEO of UCP. by Armetta Parker additional reporting by Elizabeth Reitz Armetta Parker is UCP’s director of marketing and communications.
Elizabeth Reitz is the organization’s communications specialist.
To learn more about LWL,
download a copy of “The State of Disability in America,”
the custom forecast map, or to order the No Limits. Just Life.
webcast, visit www.ucp.org
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