ABILITY Magazine - Cheryl Hines by ABILITY Magazine

MAGAZINE

VOLUME 2008 CHERYL HINES FEB/MARCH

THE VOICE OF OVER 50 MILLION AMERICANS

US $4.99 Volume 2008 Cheryl Hines Feb/March

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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 Denise Riccobon, RN Maya Sabatello, PhD, JD Romney Snyder Jane Wollman Rusoff

HEADLINES — MDA, Microsoft, PepsiCo

HUMOR THERAPY — Gone, Baby Gone

CVS — Leveling the Playground for All Kids

ONE BOY’S STORY — ‘Buy Me Something’

GREEN PAGES — Warm Tips for Cold Weather

TECH ACCESS — A Mother and Son Push Boundaries

DIANA & KATHY — A Film About Friendship

OBJECTIVE SCIENCE — Subjective Scientists

C ONTRIBUTING W RITERS

Larry David and Cheryl Hines p.40

Paralympic Games Beijing

Extremity Games

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

H UMOR W RITERS

George Covington, JD Jeff Charlebois Gene Feldman, JD

GEORGE COVINGTON — On the Real Charlie Wilson

ALLEN RUCKER — On Director Julian Schnabel

CHERYL HINES — Ms. Enthusiasm

RICKY JAMES — Part II of Our Exclusive Interview

MOTORCYCLE SAFETY — Air Bags, Helmets, Leatt’s Brace

UNITED CEREBRAL PALSY — Wheeling Around the World

RICHARD PIMENTEL — The Hidden Job Market

DIRECTOR OF BUSINESS AFFAIRS

DRLC — Respect-ABILITY Statewide Conference

MARKETING/PROMOTIONS

CROSSWORD PUZZLE — Guess Your Best

EVENTS & CONFERENCES

SUBSCRIBE TO ABILITY MAGAZINE

All Kids p.12

W EB E DITOR Joy Cortes

G RAPHIC A RT / I LLUSTRATION

Music Within

Scott Johnson Paul Kim Melissa Murphy - Medical Illustration

P HOTOGRAPHY

TransworldMX.com David Silverman Photography CVS Diving Bell p.34

John Noble, JD

Jacqueline Migell Andrew Spielberg

PUBLIC RELATIONS JSPR

NEWSSTAND CIRCULATION Objective Science p.28

John Cappello

EDITORIAL

Editorial@ABILITYmagazine.com

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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 Cheryl Hines Feb/March Printed in U.S.A.

T RANSCRIPTIONIST Sandy Adler

ABILITY’s Crossword Puzzle

Ricky James at Milestone MX Ranch with his modified Motocross bike p.48

NON-PROFITS

ABILITY Awareness Habitat for Humanity International

PUBLISHER

“Today, developers must work across divergent platforms, application environments and hardware models to create accessible technology for customers with disabilities,” said Rob Sinclair, director of the Accessibility Business Unit at Microsoft. “The AIA is an opportunity for the entire industry to come together to reduce the cost and complexity of accessibility, increase customer satisfaction, foster inclusive innovation and reinforce a sustainable ecosystem of accessible technology products.”

MICROSOFT, ADOBE & MORE

ike the famous Rat Pack featuring Frank Sinatra and his celebrity pals, a group of leading information and assistive technology companies, along with content providers and other key engineering organizations, recently formed the Accessibility Interoperability Alliance (AIA) to help developers create accessible software, hardware and Web products. AIA’s goal is to formulate standards for accessible technology, as well as to ensure mainstream adoption of such standards. Founding members of AIA include information technology companies such as Adobe, BayFirst Solutions, Microsoft and Novell; and hardware companies such as HP; and assistive technology companies such as Claro Software, Dolphin Computer Access, GW Micro, HiSoftware, Madentec, Texthelp Systems and QualiLife. AIA members will collaborate on projects intended to aid compatibility between existing technologies, and to come up with solutions to resolve the many challenges associated with developing accessible products. The group’s results are expected to yield improved developer guidelines, tools and technologies; lower development costs; and increased accessibility innovation throughout the industry.

Currently, there is no single accessibility development model that information technology developers can use to ensure their applications will work with virtually any AT, or that AT developers can use to make sure their products work with a wide variety of applications. Instead, many accessibility models and technologies must deliver a complete solution, and those investments sometimes apply only to a small number of products. As a result, people with disabilities who rely upon AT devices—such as screen readers for people who are blind—are sometimes unable to access information on certain websites or applications and may be forced to wait for upgrades before they can use the latest software. Reducing barriers to accessibility and usability among current and future technologies is expected to create broader markets and new opportunities for customers and companies. “Accessible technology is going mainstream as more and more people, with and without disabilities, begin to discover the many ways it can improve their quality of life,” said Claudio Giugliemma, CEO of QualiLife, an assistive technology company based in Switzerland. “Because of the work AIA will do … to foster collaboration and innovation across the industry, more people, especially those with disabilities, will be able to use technology products to help with healthcare, aging and other important life issues.” www.accessinteropalliance.org

The founding members of AIA have selected four inaugural projects: • To develop a set of assistive technology keyboard shortcuts that will be consistent no matter which Web browser you use • To improve compatibility and exchange of information between Information Technology (IT) and assistive technology (AT) products • To add features that support additional rich document scenarios and new Web scenarios • To map Web accessible information through automation that ensures maximum value for AT products, which benefits people with disabilities

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CLOSED CAPTIONING

n Other Tech News: Apple now includes closed captioning playback in its QuickTime software, iTunes and in the latest software for both iPod and iPhone. Also, at the recent Macworld 2008 in San Francisco, the company announced a new AppleTV that supports closed-captioned playback. The software for the new AppleTV will be available to existing AppleTV owners as a software update over the internet. www.apple.com

DON’T POP PILLS IN THE TRASH

he Teleosis Institute launched the Green Pharmacy Program in May 2007 to reduce pharmaceutical pollution of San Francisco waterways and increase public awareness about the environmental impact of discarded medications. Over 700 pounds of unused and expired medicines were collected in the first six months.

• If your area does not have such a program, see if one nearby incinerates drugs. If so, take your medication to that waste disposal depot. • At least once a year, go through your medicine cabinet and remove prescription drugs that are old or that you no longer take. Check the expiration dates on non-prescription drugs and remove those that are outdated as well. Take them all back to your pharmacy or to your nearby waste disposal depot.

Recent studies have found that more than 80 percent of waterways tested in the U.S. show traces of common medications such as acetaminophen, hormones, antidepressants, blood pressure medicine, codeine and antibiotics, presumably from unused or expired medicines thrown down the drain or toilet, which can damage aquatic life. The Bay Area’s Green Pharmacy Program sponsors events advocating environmentally safe disposal of unwanted medications. They have established community-based take-back sites in Northern California, where consumers can return unused medications. Green Pharmacy is unique in that the site manager documents all returned medicines through the Unused & Expired Medicine Registry, a program developed by the Community Medical Foundation for Patient Safety in Texas. That organization compiles national statistics on medicines returned and reasons for disposal. Once a statistically significant sample is documented, the data will be presented to pharmaceutical researchers, manufacturers and governmental organizations to build support for take-back programs nationwide. The program uses a product stewardship approach to “green” the pharmaceutical lifecycle. The program spans multiple sectors of the industry, educating and engaging manufacturers, distributors, pharmacists, physicians, consumers, and waste management companies in an effort to arrive at a solution. Here’s how you can help: • Take drugs as directed by your doctor or pharmacist. Don't stop part way through the course of treatment without first discussing it with your doctor. Even if you feel better, use the entire prescription as directed to make sure all germs are destroyed. • Do not put out-of-date or unused medication in the garbage or down the toilet or sink. • Check to see if your pharmacy has a drug recycling program that disposes of unused or expired drugs in an environmentally safe manner. Many pharmacies do.

www.teleosis.org

ABBEY’S ROAD

n inspirational third-grader has been named the Muscular Dystrophy Association’s (MDA) 2008 National Goodwill Ambassador. Abbey Umali of Redlands, CA, who appeared on the Jerry Lewis MDA Labor Day Telethon for the past two years, also served two terms as MDA California Goodwill Ambassador. Throughout 2008, Abbey and her family will travel the US, representing families who are affected by the neuromuscular diseases that are served by MDA. Abbey has congenital hypomyelinating neuropathy, a form of Charcot-Marie-Tooth disease, which is characterized by muscle weakness and a lack of coordination and balance. The only child of Joel, a dentist, and Wendi, a physical therapist, Abbey will participate in special events and meetings held by national MDA sponsors; she’ll also serve as a media spokesperson on MDA’s behalf. “She is precocious and charismatic,” MDA National Chairman Jerry Lewis said of Abbey. “I’m delighted to have such a wonderful young lady and her family spread the word about MDA’s commitment to finding treatments for neuromuscular diseases.” An active girl, she likes to read, sing, swim, play piano and hang out with friends. On the career front, she aspires to be a veterinarian. Soon, Abbey’s shining face will be featured in MDA promotional materials nationwide, and she’ll once again appear on the telethon. MDA is a voluntary health agency working to defeat more than 40 neuromuscular diseases through programs of worldwide research, comprehensive services and farreaching professional and public health education. www.mdausa.org

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GET YOUR GAME ON

ssistiveWare recently announced a new website devoted to gaming on the Mac OS X system that was created by and for Mac users with disabilities.

The site is divided into three main sections: Feature articles on gaming; reviews of individual games; and short descriptions of games that note their accessibility. "I have been designing universal access solutions for Mac OS X since 2002, and one of the most frequently asked question by users is not whether they can do their homework or write the next great novel, but what games they can play," said David Niemeijer, AssistiveWare's CTO. "With our site, we have created a platform where users can exchange their gaming experiences and can share tips and tricks." "I have been gaming with a switch on the Mac since 1995, long before Mac OS X, long before sites like this even existed. I had no guidance, no advice," said Michael Phillips, AssistiveGaming editor and long-time Inside Mac Games contributor. www.assistiveware.com www.assistivegaming.com

SUPER QUIET

uring the recent Super Bowl, amid the giant flat-screen TVs and booming surround sound, one commercial from PepsiCo made viewers reach for their remotes to see if they’d accidentally hit the mute button. The pre-game ad featured a silent 60-second bit filmed in American Sign Language (ASL) with open-captioned text for the benefit of all viewers. The spot was created by and features PepsiCo employees who are members of EnAble, an employee network whose mission is to promote a more inclusive environment for people with disabilities. Titled “Bob’s House,” the theme is based on a popular joke in the deaf community. It opens with two guys driving to their friend Bob's house to watch a football game. Once they turn onto his street, neither remembers his address. The two argue in ASL, each blaming the other for not knowing the house number. Finally, the driver comes up with a solution: he drives slowly while honking his horn repeatedly. One by one, the houses light up—except for Bob's. National Association of the Deaf president, Bobbie Beth Scoggins, believes it's an historic first for an ad featuring ASL to get such prominent play. Says Scoggins, who is deaf, "I was glad to see this part of deaf culture awareness shared in a most clever way." Clay Broussard, who plays Bob in the commercial, has worked for PepsiCo in Dallas for 27 years. He became

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involved in the deaf community through a church he and his wife attended, where services were conducted entirely in ASL. Though he is not deaf, the coworkers—Brian Dowling and Darren Therriault—who play opposite him in the commercial are. Broussard worked on the ad concept on his own time. After 18 months, he showed it to senior managers, who decided they wanted it for the Super Bowl. www.nad.org

POLLUTION & DIABETES

ambridge scientists are exploring the potential link between environmental pollution and Type 2 Diabetes. In the most recent edition of Lancet, Drs. Oliver Jones and Julian Griffin highlight the need to research the persistent organic pollutants (POPs, a group which includes many pesticides) and insulin resistance, which may lead to adult onset diabetes. Dr. Jones and Dr. Griffin cited research by Dr. D. Lee and others, which demonstrated a strong relationship between POP levels in blood, particularly organochlorine compounds, and the risk of Type 2 Diabetes. “Of course correlation does not automatically imply causation,” says Dr. Jones. “But if there is indeed a link, the health implications could be tremendous. At present there is very limited information. Research into adult onset diabetes currently focuses on genetics and obesity; there has been almost no consideration for the possible influence of environmental factors such as pollution.” In Dr. Lee’s study, an association between obesity and diabetes was absent in people with low concentrations of POPs in their blood. In other words, individuals were more at risk of diabetes if they were thin but had high levels of POPs in their blood, than if they were overweight but had low levels of POPs. Dr. Jones stated, “I think research should be carried out to first test the hypothesis that POPs exposure can cause diabetes, perhaps using cell or tissue cultures, so we know for sure if this can occur. Assuming POPs can have this effect, the next step would be to try and develop a method of treatment for those people who might be affected.”

POPs came into prominence as effective pesticides with the introduction of DDT in the 1940s. However, many of these chemicals, including DDT, fell out of favor after they were blamed for the declining number of wild birds and other animals (brought to the public’s attention in Rachel Carson’s Silent Spring) and the possible negative human health effects. As the compounds biodegrade slowly, they continue to find their way into the food chain and ultimately into the blood streams of individuals, even though many of these toxins were banned years ago. Additionally, these compounds can persist in body fat for very long periods of time.

ids these days… you can’t take ‘em and you can’t shove ‘em under a moving car. At this point in my life I should be saying, “Man, I wish I were a kid again.” But, you know what? I’m not. I don’t like what I’m seeing out there: Hoodlums, punks and brats… oh my. When I was a kid, I’d come home from school, throw my books down, eat an apple and then tear outside to play with friends. At dinnertime, my mom would ring a bell, signaling my brothers and me to come and eat. The family sat around the table and my dad asked, “So, what did you learn in school today?” “Nothing,” we answered him in unison, while shoveling Mom’s casserole down our throats. Every so often one of us slipped and said “damn,” an infraction my father punished by smacking the foul-mouthed offender on the back of the head. Hmph! Nowadays, hitting a child like that could easily command a million dollar lawsuit. Dad’s other form of stifling bad behavior was to deliver a boot in the ass. Jeez, if I’d been born a couple of decades later, I could have slapped a lawsuit on him and pocketed a cool three million.

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Talk about social change… These days there are kids who are losing their virginity by age 10! When I was 10, I was still misplacing toys. When my friends and I tried to get the low-down on sex, we spent weeks tracking down a Playboy magazine, then took turns spending the night with the issue. Today, all a teenage boy has to do to see a naked woman is type “hottie” into a major internet search engine, and 60,000 porno sites pop up—among other things. Sex is everywhere. Kids probably know as much as their parents. You could probably get a few pointers from your children: “So you’re saying I should touch your mother where?” All too often, parents today want their kids to be their best friends. Punishment is usually something like: “You are forbidden to download any songs today.” Whatever happened to chores? As I observe the lazy children out here, I’ve become convinced that I was suckered as a kid. Damn, why did I have to be burdened with learning life lessons such as Do a job right the first time, Take responsibility and Work hard and the rewards will follow? Why couldn’t my parents be my friends instead of, well, my parents? We could’ve drunk beers together, smoked dope and gone to Starbucks while the gardener did the yard work.

These days, my neighborhood is filled with kids that I rarely see. My suspicion is that they are inside their houses playing video games, watching TV, instant-messaging friends or chit-chatting on IPhones bought by parents as a reward for taking out the garbage one time last year. TV is an abomination. Hard to believe it, but in my day, we only had three channels to choose from and we had to get off the couch and walk to the television set to switch from one channel to another. Oh the inhumanity! We watched shows like Happy Days, where Arthur Fonzeralli—aka “The Fonz”—was always trying to “neck” with a “chick.” These days, you could be sitting on the couch when a nearly naked Girls Gone Wild commercial flashes across the screen. The most disheartening aspect of all of this is that our children—our future—are watching. Is it any wonder why we have so many people coming from other countries to work as doctors here? I doubt they grew up on the boob tube. These formerly poor, Third World, self-made millionaires probably got ahead just by…reading a book. I know I’ll sound like a grumpy old man if I bring up the music these punks listen to today, so I’ll give them a pass on that because every generation hates the music of the previous one. You know what? I’m sorry. I have to at least mention Hip Hop. I can understand the repetitive noise, but the lyrics? If I heard “bitch” and “ho” in a 70’s song, I’d just figure it was about a dog doing some gardening. Never in history has music been so vulgar. I just couldn’t imaging Sinatra singing “F*#* me to the Moon.” Also, aren’t there a lot more predators out there than ever before? What’s up with that? Aren’t the older women putting out anymore? But seriously, there’s way too many sickos running around. Chuck ‘em in prison. Once in jail they can see first hand what it’s like to be preyed upon by a muscled felon named Sweaty, who sports a tattoo that reads “I HATE KITTY CATS.”

house. They bring a six-pack, strip down to their underwear and take out a box of condoms, supposedly to blow up into balloon animals. When it comes to mealtime, children are chowing down. They’re a lot fatter today then ever before. No more kid’s meals for them. Newsflash, drinking Coca-cola and eating Doritos is not a great way to start your day, and could ruin your appetite for your Dr. Pepper and Cheetos lunch later on. Somewhere along the way, fruits and vegetables got booted off the island to be replaced by pizza and Skittles. More and more children are waddling into their pediatrician’s offices, and it’s not just for Ritalin anymore. Some are going for the liposuction. We need a gigantic American intervention to get kids off junk food, otherwise I think Gen X’s children will come to be known as The Diabetic Generation. Who’s to blame? Everyone. We’re all part of the problem. We’ve allowed society to dictate how we raise our children. We believe psychological mumbo-jumbo that tells us spanking or yelling at our kids will damage them for life. We don’t force them to go out and play. We give them things merely because they asked for them. “No” means “maybe tomorrow.” I have a feeling that when they get older they’ll be wondering why the trees don’t have money on them. I’m glad that when I was a kid I was a kid. Instead of the internet occupying my childhood, I went for a hike in the woods, played baseball, swam in the ocean or climbed into a tree fort with my friends. I could talk to strangers and I learned how to look someone in the eye. I miss my childhood but I wonder if today’s kids will miss theirs. I remember my parents huffing: Kids these days! But at least I heard them, which I never would have if my ear had been glued to a cell phone. by Jeff Charlebois

It’s not just piggy men; there have also been a slew of female teachers sleeping with their students. I could understand if these ‘educators’ were ugly and homely, but the crazy thing is they’re babes. It’s disgraceful, disgusting, but more importantly, it’s befuddling. I mean, where were they when I was a kid? I loved my French teacher. Unfortunately, she insisted on enforcing boundaries. Sacred bleu! I do understand why parents are extra protective these days. Who can blame them after watching a Dateline show with Chris Hansen? Men of all shapes and sizes with internet names such as HUNGHORSE69 or LICKDASTICK show up to what they think is a 13-year-old’s ABILITY 11

he folks over at CVS Pharmacy aren’t so busy filling prescriptions that they don’t have time to get in their charitable work. With their CVS Caremark All Kids Can program, they have committed more than $2 million in 2006 and 2007 to Boundless Playgrounds, offering children of all abilities accessible places nationwide to play and frolic. CVS’s charitable trust also writes big checks to schools and non-profit organizations that serve children with disabilities. In 2008, they joined forces with Very Special Arts to underwrite the cost of placing artists-in-residence at schools nationwide, adding a bold splash of color to an area of education that had become terribly faded in recent years. And that’s just for starters…

Recently, Chet Cooper, ABILITY’s editor-in-chief, sat down with Eileen Howard Dunn, vice president of corporate communications and community relations for CVS, to chat about this Rhode Island-based corporation, its 190,000 employees across 40 states, and why they do the things they do. Chet Cooper: How did children with disabilities become your focus? Eileen Howard Dunn: It was always clear to us that we could make a difference in the lives of children, especially those with disabilities. We said, “OK, where do we want to focus?” Children with disabilities is a very broad area. Ultimately, we settled on programs, such as Easter Seals, that would help them learn, play and succeed. Learn means helping kids be the very best they can be. For example, it might mean giving them adaptive technologies in school to enhance learning in the best way possible. For the play component, we would build playgrounds. For the succeed component, we provide medical rehabilitation and related services to kids with disabilities. Cooper: How did you go after your goals to help children learn, play and succeed? Howard Dunn: In part through our partnerships, where we reach out to kids and their families. We call one of our programs All Kids Can, which emphasizes one of our main themes: inclusion. It’s not just for children with disabilities, it also makes an impact on typically developed children as well, so they, too, can see that there are no barriers, that every child has an opportunity to succeed and have fun. We developed accessible playgrounds where everyone—including a child with a walker or a wheelchair— can get to the top of the play structure, because that’s what life’s all about. We engage our national, regional and local partners, and our employees to drive awareness to these issues. When a company such as ours helps Easter Seals or Special Olympics, for instance, they benefit and we benefit.

Cooper: Is there some way to measure the impact of all these intangibles? Howard Dunn: Absolutely. We have criteria to measure results to determine if it’s a good program or not. What we do is ask the affiliates to come up with the programs, each of which goes through a whole granting process. They ask, “What demographic are we serving? How many people will we impact? At what level?” The specifics. And then there’s a review process. My hope is that at the end of five years we’ll be able to say, “We affected this many people’s lives.” Already there are probably hundreds or perhaps thousands of stories of people whose lives we’ve touched without our even knowing it. At one of our annual sales meetings for All Kids Can, the wife of one of our regional managers in the Indianapolis market told a story about one of the mothers she’d met. The woman was single with three children, two of whom are autistic. Both boys went to a camp that we sponsored. The boys’ mother said that it was a wonderful summer for her because she had a rare chance to decompress. We thought the story was even better because we didn’t solicit it. Cooper: It’s easy to forget about the impact that disabilities can have on a family. Howard Dunn: Whether a child has Asperger’s or cerebral palsy, or they’re in a wheelchair, our hope is that we can make some small, but meaningful difference in their lives. Because raising a child is an interesting path. I have five children myself. Cooper: Really, I would have thought you had six. Howard Dunn: (laughs) I’m the oldest of six. Being a parent is one of the greatest jobs I’ve ever had in my whole life. I’m probably going to well up because I feel blessed that I’m a mother and can raise these five kids and hopefully help them be the best they can be. I want that for children with disabilities as well, because it’s tough being a kid period. On ABC TV’s Extreme Makeover: Home Edition (EMHE), one of the families we helped was a husband and wife with four children who all have a rare childhood blood disease, which essentially makes them highly allergic to a lot of different things. Two of the children use feeding tubes. Their antibodies react to food like it’s a virus and they kill it. So they have a variety of issues and illnesses. When the father couldn’t get answers about what was wrong with his children or how to cure them, he decided to go to medical school. So he had education bills, on top of the mortgage and other expenses. So EMHE redid the family’s house. What we did was pay the kids’ medical bills and cover the father’s medical school expenses, so that he could have a chance to care for his kids without the pressures. Their new home even ABILITY 13

Eileen Howard Dunn

has a pharmacy inside because the children need a lot of injections.

Howard Dunn: Right. So we have a great partnership with them.

Cooper: Is it a CVS pharmacy?

Cooper: Are you familiar with our non-profit, ABILITY Awareness?

Howard Dunn: (laughs) We’ve done two EMHE shows that help families, and we’ve two to go. For one of them, we built a playground in the backyard because their child is in a wheelchair. The shows have not only resonated with our employees, but also with our customers. We’ve received thousands of appreciative emails. Cooper: You must love your job. Howard Dunn: Honestly, it is truly one of the most rewarding things I’ve ever done in my life. Cooper: I know EMHE uses volunteers, but what about Boundless? Howard Dunn: We solicit volunteers from our local market to help, but we also have full-time staff assigned to the playgrounds. Then our eight-person advisory council gives us their best insights into what’s going on in the disability and child-development areas. They point out where things are working well and where they could be better. For instance, the advisory council told us: “You should really think about art, because it’s one of those things that’s not physically bound. You can do music and art at any level and be in a wheelchair, in a walker...” Cooper: Put a paintbrush in your mouth and paint away. 14

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Howard Dunn: I’m familiar with the magazine. Cooper: We started ABILITY Awareness in 1995. We build houses for families with disabilities using volunteers with disabilities to build the house. It changes the paradigm of what it means to have a disability. We had Ty Pennington on the cover of a recent issue. We talked with his people about bringing our program into their program. Our typical partner is Habitat for Humanity. Generally our first order of business is to train the local affiliate about what’s going to happen, because many of them freak out when we come in and say, “We’re gonna have a bunch of people with disabilities build a home.” Howard Dunn: (laughs) It’s not what they expected. Cooper: Right. They think: “My foreman got injured and is on disability, now he can’t work. How are you going to—?” So we have to educate people about what “disability” means, the fact is we can train almost anyone to help on a project. We may have to lower a platform, for instance, to make the site wheelchair accessible, but there’s usually something that can be done. We wanted to bring that model into the volunteer base for playgrounds, too, so that volunteers with disabilities could help build accessible playgrounds. Howard Dunn: We should talk about that as an

opportunity, because Boundless is building playgrounds all across the county. Cooper: I think Kirk Douglass has also funded over 500 playgrounds. Howard Dunn: Wow, that’s a lot… You know, one of our advisory council members explained to me that there are four stages of play development during which you learn important life skills. Of course, I made the sarcastic comment that I knew people who had missed a few steps. But yes, these steps are apparently critically important to a child’s development.

Howard Dunn: We’re a big company and a lot of people come to us and say, “Can you help support our mission?” When we consider an organization, we start with considering how inclusive their concept is. It doesn’t have to be typically developing—it doesn’t have to be a ‘child with a disability’ program. If we have a pre-existing school program that we supported through All Kids Can, we’d go to them and say, “OK, you need to help us help you. Can we develop a program that drives inclusion? You don’t have to have the facility for children with disabilities today, but can you down the line? Will you? Will you start thinking about that? Do you have the means to support that?” Those are the types of conversations we have to have with potential partners.

Cooper: I’ve never heard of that. Howard Dunn: Oh, my God, it’s fascinating. You understand how the roles of cooperation as well as feelings of isolation start to show up in children. As the oldest of six, I had my built-in network growing up. Same with my kids. They do the jungle gym and follow each other. So my four-year-old is almost as good as my eight-year-old. I have three boys in the middle, two girl bookends. My four-year-old is getting almost as good as the eight-yearold, and at a much faster pace, because he’s following in the footsteps of his brothers. My 18-month-old is already doing things that have me saying, “Are you kidding me?” It’s the socialization factor. My youngest is a much more social child than my first child, because she’s got four brothers and sisters who are constantly talking and chatting with her. But it’s also the family dynamic. One of the reasons why we built the playground for the family in Vermont in the last episode of EMHE was because the mom was having challenges bringing her son to the playground. Now he has his own playground in his backyard, where he can get wheeled to the top of the play structure. That’s an invite-your-friends-over kind of opportunity. That’s a whole different kettle of fish. So it’s not just an individual child, it’s a social network. Cooper: I grew up in a woodsy, rural area, so everywhere we went was a playground. I was trying to think of those four development steps. I probably missed some myself. Howard Dunn: (laughs) You probably hit them all, just in a different way. Another one of the great aspects of All Kids Can is that it’s not one thing. We try to make the program as a la carte as possible. Each of our folks is different. They all have special qualities, and they relate to the programs at a different level. If a store or a regional group wants to do a regional exercise, they can do that or they can volunteer at any of our schools, taking it at their own pace. We don’t say, “If you want to participate in All Kids, you have to do this.” It’s more like, “Here are some choices and opportunities for you.” Cooper: How do you determine with whom you want to partner?

Cooper: What are some of the challenges you face with your own children? Howard Dunn: Well, most recently, one of my sons and one of my daughters decided to take guitar at the same time, so I’m nervous that they’ll compete against each other. Cooper: Could it turn out that they’ll work as a team? Howard Dunn: These two are very good friends, but they’re both very competitive. My son has got big fat fingers, which poses a challenge with the strings. My daughter has much thinner fingers. He’s got the rhythm, but she’s got the fingers. He’s starting lessons with a different teacher. It’ll definitely be interesting. Cooper: Sometimes kids can be a handful... So, what was it that drew you to Special Olympics? Howard Dunn: It’s always goes back to inclusion. What I love most about the Special Olympics is the looks on these kids’ faces when they compete, cross the finish line and get their medals. Every year in Rhode Island, All Kids Can participates in our state’s largest road race. I think last year we had 7,000 winners. This is another example of a program that we’ve converted to be inclusive. Rhode Island Facility Alliance, Special Olympics and a lot of our schools with disability programs participate and give us all the runners and athletes. You’ve got some children who are assisted and just plugging through. We had one guy this year who was rolling himself along, and he was determined not to stop. One person said to him, “Do you want some help?” while another said to him, “I’ll push you,” and he was like, “No! It’s my race and I’m doing it!” You should have heard the thunderous applause he got when he crossed the finish line. It makes a world of difference to be able to find new ways to extend the All Kids Can program to the next market. I couldn’t have written a better story if I tried. www.cvs.com/allkidscan ABILITY 15

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Welcome to my world. I’m glad you’re here. Want to ride bikes, have some cake, watch while I pull my tooth? Great!

live in a world where, “ya ya ya bobba you knees” means “mind your own business,” unless it means “whatever you say.” I live in a world where it’s okay to tear open a card at a birthday or holiday, shake it loose and gripe, “Oh man, no money!” right in front of the person who gave it to me. So where is this world you ask? It’s here in Indiana, where I live with my mom, my dad and my dog. My sister used to live here, but now I hardly never ever see her. This morning I went outside the check the mail and there was nothing but junk. It’s always junk when there’s nothing for me. I wish people would mail me letters more often. I like to get them and I like to write them too. Mom gets stingy with the stamps for some reason though. I guess it costs extra to mail things to the North Pole. So after checking the mail I snuck a few Popsicles in in addition to breakfast, and sat down with my mom to study math. I used to go to public school, but I’m home schooled now. I like it better this way. My teachers were mean to me. At least that’s what I tell my mom. Right now, I’m learning plus and minus 12’s. I cheated on a timed test not too long ago, so of course I got an A+. Just as Mom was about to give me the big star sticker, I got choked up and confessed.

“You what?” (She’s always making me repeat myself.) “I cheated. You mad?” Mom lets me slide with a lot of stuff, and luckily she wasn’t so mad. I could have gotten away with it, but I just like to tell the truth. Mom says I’m a good boy. So after math—man, is it hard to tell which number is the biggest number—and spelling, I woke up my dad. He works third shift so I let him sleep until around noon. He sleeps loud. I told my mom, “Your husband sleeps like a pig!” Then I told my dad, “Dad, you sleep like a pig!” They didn’t quite understand what I meant, so I demonstrated how his snoring is similar to the sound a pig makes. At least Mom thought I was funny. After waking up Dad, I let my dog outside to go potty. “Come on Sophie,” I yelled. She’s a good dog, a golden retriever, and I like to boss her around. I like to boss Dad around too. We settle disputes by wrestling in the living room. A while back I wanted to get big and buff, so when a commercial for Bow Flex came on, I wrote down the phone number. It’s one eight zero zero something. My sister told me I couldn’t call and order because it was too expensive. I’m saving my money though. I’d really like to buy a motorcycle.

“Um, hey Mom.” “Yeah?” “I have to tell you something.” Man was I worried... “I cheated.”

The truth is that I write down a lot of phone numbers. I like calling people. If Mom doesn’t approve, I’ll just take the cordless and make calls with my bedroom door closed. I even ordered a pizza, breadsticks and Pepsi from Papa John’s one day. I kept saying “I’d like it for ABILITY 17

wedivery.” It took them a minute, but they knew what I meant, and brought it to the house. I guess since Mom was already making dinner it really upset her. She paid for it anyway, and we ate it. I was in the mood for some pizza! Come to think of it, what happened to the Papa John’s delivery magnet? Well, anyway, later on in the day, after Dad left for work, Mom and I drove to Ft. Wayne to do some shopping. I told her I did not want to do nothing today. Mom was a little confused by the double negative, but she knew I didn’t mean let’s be lazy. I guess I could have just said I want to do something. That would have been quicker. Apparently Mom didn’t realize how late it was because when we left JC Penny’s, the smaller stores in the mall were closed and locked up. This freaked me out. Mom kept saying, “Its okay,” but it was not okay. I guess it felt like jail with no lights and bars across the doors and windows.

I miss my Sonnie so badly and want to go see Hollywood. Still, I talk to her on the phone most days, and every phone call for about the past six years, before I hang up, I tell her to buy me something. And it works! She has something for me whenever we see each other. I think its because she loves me so much. I like it when people buy me presents. Who doesn’t? Though it was really late when we left the mall, Mom and I stopped at a grocery store that never closes. It amazes me how stores can stay open all night long. I like to ask Mom when places close and open. So at the grocery store, I said, “Hi,” to a lady when we walked in. I didn’t know her, but she was friendly and said, “Hi” back. I asked her where her husband was and why she was out so late. She just laughed and smiled. “Come on, busybody,” Mom said. I think she was in a hurry because it was late. I hugged the lady goodbye. I like to hug people. I’m just affectionate. I can’t help it. It used to bug Mom and Dad, me hugging strangers, but now if a person is willing to get a hug, Mom lets me give one. She says there’s nothing wrong with hugging.

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The next day we woke up early for church. Even when I’m up late and super sleepy I get up because man, do I love church. I love to sing and dance and hug everyone! I’ve been going to church since I was a baby. My sister still laughs about something that happened in church about five years ago.

‘Still, I talk to her on the phone most days, and every phone call for about the past six years, before I hang up, I tell her to buy me something. And it works!’

I’ve seen jail on TV. Mom says I can’t fly to see my sister who lives in Los Angeles until I’m at least 13, or I’ll go to jail. Mom was on the phone with my sister, Sonnie, when she told me this, and I heard Sonnie laugh. I think Mom’s telling a fib about going to jail for flying under age, but I’ll wait two more years to be on the safe side.

“If an adult can’t handle a hug from a kid, then maybe they’re the one with the problem,” she told my Sonnie. Is hugging a problem?

Well, I’d heard my dad say these words when he would get mad or didn’t believe something. “Boo chutes,” he’d say. Then I told Mom and Mom got real mad. She yelled at Dad for teaching me the words. It’s not like he said it all the time, but I’m very observant and I like to repeat things I hear. I’m still not really sure what it means, and I haven’t repeated it in a long time.

So anyway, back to my sister’s favorite church story. Since it really upset Mom that Dad was saying boo chutes, I figured it would be best to pray for him. And when the time came for prayer requests at the end of Sunday school, I raised my hand and exclaimed, “Me pray my daddy stoppa say boo chutes.” (My English wasn’t so great back then.) My Sunday school teacher didn’t quite understand what I was saying, so she turned to my mom and asked, “What’s he saying, Natalie?” And wouldn’t you know, Mom said she didn’t know what I was saying! I was really stumped because I knew she knew. My Sonnie just thinks this is hilarious. In church I learn about heaven and Jesus. My grandma and sister, Sarah, went to live with Jesus and so have other sick people from hospitals. I’ve been to the hospital before. I went in to have surgery one day and panicked. I grabbed my mom’s hand and cried “I don’t want to live with Sarah!” Mom got tears in her eyes, but she smiled and assured me that I was just going to go to sleep and wake up a little sore. Mom always makes me feel better about things. I love her very, very much and tell her every day all the time. But the truth is I love everybody all the time. I like to make sure people are happy, and okay, I like to laugh, I like to learn, and I’m just excited about life. Food too! Most people who know me really well say I’m pure at heart. Well I say, over dead my body! (That’s just another one of those sayings that I picked up somewhere. I don’t really know what it means.) Sorry, I forgot to introduce myself. My name is John Gabriel. How are you today?

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CHILL OUT A LITTLE

aby it’s cold outside, and who doesn’t want to make sure the cold stays there? Yet heating costs can leave you reeling. Besides, doing something really simple, like putting on a sweater or keeping your furnace in tip-top shape, can help put a serious dent in that exorbitant utility bill.

Start with your filter. It’s amazing how cruddy it gets, and the more clogged it is, the harder the furnace has to work to keep you cuddly warm. To check the filter, turn off the furnace’s power source, remove the filter and hold it up to a light to see if light shines through. If it’s fuzzy, it’s time for a little trip to the hardware store. The good news is that filters are only a few dollars, and easy to install. Just be sure to measure your old filter before you run out, all gung-ho, and buy something that doesn’t fit. Also, since best practices say that filters should be replaced every three months, go ahead, throw caution to the wind and plop down money for a couple extra, so you have replacements on hand. Keep your thermostat to 68 degrees (or lower) during waking hours, and down to 55 degrees (if not completely off. overnight). As a general rule, every degree you lower a thermostat’s set temperature saves 3 percent of energy costs over a 24-hour period, and setting the thermostat properly can save from 5 percent to 20 percent on your monthly heating bill. If that doesn’t warm you up, I don’t know what will! ON THE FLIP SIDE As much as I try to go paperless, between my home and office, I print a lot. Most of the time, it’s just for my reference or for a project I’m working on. Once I’m done, off to the recycling bin it goes. But, wait a minute. There’s a whole other side of pristine, white paper just begging to be used! (Can’t you hear that little whining voice?) While printing on the backside of paper can be difficult in an office setting (nothing like a perturbed co-worker who goes to the printer, only to find his client’s presentation on the back of a Google map), it’s not so tough at home. So, unless you’re prepping for a business meeting, or plan to hand out print-outs, simply flip the page over and put it back into your printer! It’s a two-for-one deal! The other thing is that once-used printer stock serves as great scratch paper for your little darlings’ “art projects.” I promise, while you’re busy trying to figure out if the drawing is of a cow or a dump truck—as if there were a significant difference—they’ll quickly move onto the next sheet. Lastly, it’s really simple to save up a small pile of sheets, bulk cut them into quarters and staple them. Voila! Instant scratch pad! TOYS WE LOVE Just when you thought there were some things that you just couldn’t recycle, along comes sextoyrecycling.com. Yes, folks, once your trusty love rabbit has given you your last thrill, you can help the environment by not burying it in newspaper and stuffing it in the bottom of your trash can! All you need to do is contact the company, and they will send you a pouch in which you can return your well-loved products. All the company asks is that you tidy up a bit, washing the product before returning it. For some, this may prove added incentive: For every misfit toy you send back, you get a $5 voucher toward the purchase of your next toy. Ain’t recycling grand? 20

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IIGS computer with an adaptive firmware card. Programmers helped to adapt the system so that Forrest could operate it using a single switch. The computer, which his insurance company helped pay for, served as his “voice prosthetic.” That was a lucky find, as there were not many computer software programs available at the time to meet Forrest’s needs. However, his mother stayed on the case, and happened upon a software program through the UCLA microcomputer project called “Where’s Puff,” as well as several other software programs that were appropriate to a preschool child’s developmental level. Through UCLA and R. J. Cooper, which provides software and hardware for persons with special needs, Forrest also learned how to use a switch and other tools to understand the concept of cause and effect, as well as how and when to apply it.

n assistive technology user since he was three years old, S. Forrest Isaacs is now 22 and still making great strides through the assistance of Bluegrass Technology Center, one of Kentucky’s Alliance for Technology Access Centers. Two decades ago, he fell into a bucket of water while still a toddler, and went without oxygen for a short time. It resulted in him acquiring spastic cerebral palsy, becoming quadriplegic and losing his verbal communication abilities. While that’s quite a diagnosis for anyone, he was determined to live a life that was as fulfilling as it could possibly be. Beyond conventional therapies and support systems, Forrest’s mother, Jean Ann Isaccs Bramlette, helped him seek out helpful technologies around the country and around the world.

His home speech pathologist and his mother worked together to develop a communication system with Forrest based on “yes” and “no.” Forrest would look up if his answer to a question was “yes,” look down if his response was “no,” and not react at all if the answer was “neither.” Then they developed an Etran system, which uses eye-pointing as a means of indicating pictures, symbols (or letters, numbers and words) that serve as a way to communicate. This helped Forrest pair words and sentences together. When he entered school, some administrators mistakenly assumed that, based on his physical condition, Forrest did not have a strong capacity to learn. However, he proved them wrong. With the use of assistive technology, and the support of school personnel, he moved from a self-contained moderate/severe program to an OHI program, meaning other health impaired. This was a significant change in his education program, because the academic requirements were based on grade-level expectations.

“Accepting a disability doesn’t mean accepting defeat... it means finding new ways to do things.”

“Accepting a disability doesn’t mean accepting defeat,” says Jean, “it means finding new ways to do things.” The Alliance for Technology Access, now celebrating its 20th year, is dedicated to this cause. In Jean’s quest, she found Ann P. Grady, PhD, an occupational therapist based in Denver, at the Children’s Hospital. Ann worked at the AccessAbility Resource Center, where Forrest got an opportunity to try an Apple

Over the years, Forrest has experimented with many types of assistive technology, from lower level systems, such as communication boards, to highly sophisticated programs, such as using Speaking Dynamically software on a computer. The system, which features word prediction and abbrieviation-expansion capabilities, allowed Jean to develop “talking communication boards” for Forrest, based on subjects and themes. One of the “boards” was a joke of the day. Jean would program the system so that Forrest could tell his jokes not only to his teachers, but also to his principal who, after screening it, would allow it to be announced over the loudspeaker to Forrest’s classmates. Through the use of his Macintosh computer ABILITY 23

S. Forrest Isaccs, as a young tyke, running his cool, communications center.

and Speaking Dynamically software, Forrest was able to achieve both academic and personal goals. To help Forrest participate in Show and Tell, Jean used her digital camera to import pictures that she had taken of their home and other familiar environments. By using Speaking Dynamically and updating the boards, Forrest could tells stories about his family, what he liked to do, where he lived, etc., which helped those around him get to know him better. Beyond helping her son, Jean wanted other children to have access to technology that could expand their worlds. In the late 1980s, when she came across an article on grassroots technology centers for individuals with disabilities, she contacted the Special Education Department at the University of Kentucky, as well as the local Association for Retarded Citizens (ARC). Through all their combined efforts, they created the Bluegrass Technology Center for People with disABILITES. Soon after, the center was selected as the Alliance for Technology Access Center in Lexington. Jean has done amazing things with limited resources. 24

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For instance, she collaborated with Dr. Barney Fleming, a biomedical scientist, to help children enjoy better access to everyday objects, such as a camera. (A switchaccessible camera is now manufactured and sold through Orcca technologies.) She worked with physicaltherapy students to develop another idea: a switch-activated rocking chair, which Forrest now enjoys. Jean and Forrest are also using assistive technology to develop a gumball operation. Most recentnly, Forrest tried out the Tobis Eye Gaze system, an eye-operated program that is added to a computer for accessing software programs. He gets his grooming done by a device called a Flowbee, which uses a vacuum cleaner to cut hair. In the past, barbers had been reluctant to take Forrest on as a customer, because of his spasticity. Jean and Forrest are eager to see assistive technology continue to advance so that one day, he can get around the world using a flying car that will let him cruise at his own speed. by Debra Bauder and Bob Glass For more information go to www.ataccess.org

disabilities. Later, Kathy worked as the advocacy coordinator at the Center for Independent Living, writing articles and networking. Simone: In the documentary, audiences see you both at political rallies as well as when you are lobbying your legislators. Do you think conditions are improving for people with disabilities in this country? Diana & Kathy: We have more rights for people with disabilities today because of the ADA. So, they can now get around on buses. We are also glad about a 1999 Supreme Court decision, which allowed people with disabilities to live in the least restrictive environment. But, there is still a long way to go. Simone: What are the big issues today facing people with disabilities? Diana & Kathy: We want more jobs for people with disabilities. We want better communities, better housing and a better life. Money and funding should support a person’s choice of where and how they want to live. Simone: What advice do you have for others who want to live outside institutions? Diana & Kathy: They should make sure they get backup up Personal Assistants (PAs). PAs don’t make much money. We need to pay them. It is not easy to find good PAs. The main ingredient is more support.

hen Diana Braun and Kathy Conour met 38 years ago in a foster home, they never imagined their lives would intertwine and later be documented on film. Now, living in their own home in Springfield, IL, Diana is not only Kathy’s personal assistant, but also her companion and lifelong friend. Here, they answer questions about their lives and their experiences in the making of the short documentary, Body & Soul: Diana & Kathy. Diana answers some questions for herself, and others as Kathy’s interpreter. Filmmaker, Alice Elliott, also weighs in. Her previous doc, The Collector of Bedford Street was nominated for a 2002 Academy Award. Simone Pero, Elliott’s producer, conducts the interview. Simone: When did you first become activists? Diana: In 1980. Our landlord at the time did not want to rent apartments to people with disabilities. We knew he was playing games with us. So, we called a lawyer to help us stop the discrimination. Kathy was lucky to have her parents, a good lawyer and money. This experience inspired us to keep fighting for the rights of people with

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Simone: How did you meet Alice? Diana & Kathy: At a Columbus, OH, screening of her film, The Collector of Bedford Street. Diana: After the film was over, Kathy poked me and asked me to tell her about Alice. We waited outside until she came out. After that, Kathy kept emailing her. Simone: What has it been like for you to have someone filming you? Diana & Kathy: It felt good. We want people to see us, so they can have a similar, good life. We want them to see that we have the same experiences they do. The more we do that the better. Diana: Sometimes it was hard to be filmed. But we kept going. Simone: Does anything surprise you when you attend screenings of the film? Diana: A lot of people have tears come out of their

eyes. Kathy didn’t expect a great response from audiences, but I expected a great response. Simone: What have you been doing with the film? Diana: We are traveling with it. Recently, we went to Seattle and Atlanta to accept awards for the film. Next summer, we’re going to Kankakee, IL, to show the film and talk about it afterwards. Simone: Kathy, how have you been feeling lately? Kathy: I’m feeling better now, but I’m old. I’m getting a new chair soon and I hope it will be better. In this one, my hip moves and the seat doesn’t mold to me. I also have to pay a private nurse now. It’s not right I have to pay. Medicare doesn’t like to buy new chairs. They want people to use manual wheelchairs, but it doesn’t make sense for people who can’t use their limbs. Medicare rules need to change. Simone: Alice, what are your hopes for the film? Alice: I want everyone in the country to see this film, because many people are uninformed about the simple challenges people with disabilities face every day. Having the film shown on public TV will be a step towards achieving our goal. This is an exciting time because it’s an election year. Lobbying and advocacy can make a real difference. We believe the lobbying Diana and Kathy did in the film has influenced Senator Obama’s policy on employment and disability. This is democracy in action. His campaign recently came out with a statement that he wants to change the Medicare laws so people don’t lose their benefits if they leave their homes. The current law states that people who receive medicare home health care are only allowed to go to the doctor, to church and to the beauty or barbershop. As legislators become more informed, we will see large, unsafe institutions close and people become more integrated into their communities. Kathy McGinley from the Disability Law Center says that people want the right to live, work and play in their own communities. I hope that’s what Body & Soul: Diana & Kathy will show. I hope this film will help breakdown barriers to full participation. We want every building, bus, plane and transportation vehicle accessible for all people. Simone: Alice, what about Diana and Kathy’s story did you find compelling? Alice: The way Diana and Kathy go after something they want motivates me to do the same. The fact that they journeyed to Washington DC and spoke up for their rights, made me committed to telling their story in the most honest way I could. After they asked me to make a documentary about them, they got into my brain and my heart; they changed my life.

Simone: Where are you headed with the film? Alice: We plan to screen it before Congress in 2008 and to go to states where there is a chance to influence legislation and change policy. There are disability awareness and history of disability rights curricula being written, and we are hoping to make Body & Soul; Diana & Kathy a part of that national curriculum. Their lives span the Disability Rights movement from living in institutions to living independently. For us, this is part of a multi-year public outreach and advocacy plan. Simone: Were there challenges with the making of Body & Soul: Diana & Kathy? Alice: I was concerned about Kathy’s health, and never knew how she would feel when I arrived to tape. Sometimes we would all go off to the hospital together. However, I did not want the film to be just about illness, because Diana and Kathy have so much more going on in their lives. The filmmaking process includes a time of focusing on the question, “What is the story?” Along with their activism, we wanted to include the story of a large Illinois institution for people with developmental disabilities that was trying to reorganize. We also pursued Diana’s search for her mother, which was a storyline that brought her childhood to closure. Diana, Kathy and I became close because of all the things we’ve been through over the five years that we filmed. Simone: How did you become involved in making films about people with disabilities? Alice: My first film, The Collector of Bedford Street, was about my neighbor, Larry Selman who has an intellectual disability. When I started that project, I began to learn about the challenges he faces. I also discovered that there were hundreds of people who were interested in his story. A community of self-advocates, caregivers, administrators and individuals have embraced my work. Sustaining these relationships brings me new projects. Simone: What’s next on the horizon for you? Alice: I’m making a film about a couple with Down’s syndrome called 2 Weddings and a Future. One family is Christian, the other Hindu. He’s a musician and she’s a teacher’s aide. When the couple got married they were optimistic about how their worlds would blend; now they’re working out the details of independent living and self-determination. Simone: What drives you as a filmmaker? Alice: I’m creating change in the world by telling stories that might not otherwise get told. I like being an artist and an activist. Exploring the ability to use art for change gives me a purpose to get up every morning. How many people can say that? www.dianaandkathy.com ABILITY 27

t a recent conference on spinal cord injury (SCI), a scientist challenged me because I’d written about therapies that had yet to be vetted by the rigorous standards of objective science. It was as if he’d appointed himself sheriff, and deputized his colleagues. As someone who’s been involved in the scientific process for decades—at times at the national policymaking level—I thought his ‘science as sacred cow’ attitude was not only naïve, but also a roadblock to progress. Although an invaluable signpost guiding us to new discoveries, the scientific process is—from the basicscience laboratory to real-world clinical practice— inherently subjective. The more we ignore this fundamental truth, the less effective we will be in developing real-world treatments for a multitude of conditions.

DOUBLE BLIND OR DOUBLE STANDARD In his advocacy of high scientific standards, the aforementioned scientist apparently was unaware that most routine medical practices do not meet such criteria. Specifically, the Congressional Office of Technology Assessment (as well as others) concluded that only about 10 percent to 20 percent of such practices have been scientifically proven. Most have been grandfathered in, 28

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getting what you might call a “free pass,” because “we’ve always done it this way.” By contrast, muchneeded innovative therapies face huge regulatory hurdles. In the case of SCI, for instance, which has a relatively limited economic market, making scientists jump through hoops will ensure that development of new therapies will continue to evolve at a snail-pace. This double-standard hypocrisy is systemic in biomedicine. For example, at the conference mentioned earlier, a U.S. scientist was highly critical of an innovative— albeit questionable—function-restoring therapy being developed in China. He found fault with it primarily because it had been made available to the public without sufficient testing. But one of the field’s foremost scientists later noted that this critic routinely performs surgical procedures that lack the testing he purports to demand of his Chinese colleague.

LESSONS OF HISTORY If we learn anything from history—such as the persecution of Galileo for proving that the Earth moves around the sun, or the ridicule of Ignaz Semmelweis. for audaciously suggesting that physicians wash their hands—it is that today’s righteously defended scientific beliefs

will be tomorrow’s anachronisms. The only factor that distinguishes present scientific truths from those of the past, again, is subjective judgment. Early in my scientific career, I had the good fortune to meet several of the modern age’s titans of science. Their breakthrough discoveries show just how relatively subjective science can be. For example, when I was a fledging biochemist, I met Sir Hans Krebs, who was awarded the 1953 Nobel Prize for exposing the metabolic pathways that are now at the foundation of medicine. But before the accolades, he faced the naysayers—as emonstrated when he showed my colleagues and me a letter that he had received from the prestigious journal, Nature, which had declined to publish his seminal work because they said that it had insufficient scientific merit. Today, as I write about therapies that challenge the status-quo, I often reflect on Krebs’ rejection letter. If the father of modern biomedicine could be turned down by a prestigious scientific publication, what innovative therapies are experts rejecting today, based on subjective, limited views of the world? “Every man takes the limits of his own vision for the limits of the world.” —19th century German philosopher Arthur Schopenhauer Around the same time I met Krebs, I made the acquaintance of Dr. Francis Crick, winner of a 1962 Nobel Prize for elucidating the structure of DNA, the molecule at the core of life. Later, Crick acknowledged that he perceived the double-helix structure of DNA while under the influence of LSD. It is “mind-blowing” to know that this revelation occurred while he was in a drug-induced state of consciousness.

INTUITIVE VS. OBJECTIVE SCIENCE Science is not supposed to work this way; it has welldefined procedural rules. Nevertheless, intuitive insights, whether they are triggered by dreams, meditations, out-of-the-blue epiphanies, etc., play a much larger role than is commonly acknowledged.

altered consciousness, synergistically complemented his discipline. In a rough analogy, the difference between playing by the scientific rules and a more expansive, creative process is like the computer playing chess against the strategically insightful grandmaster. The computerlike scientist has to go through a lot of experimental iterations to make progress, but lacks the computer’s speed. Unencumbered with the blinders of the scientific process, the “grandmaster” has a more expanded vision of what is possible, can bypass procedural steps viewed as unnecessary, and, in turn, make a quantum-leap forward. Native American philosophy reveals useful insights. Specifically, in 1995’s The Way of the Scout author Tom Brown, Jr. describes how, when he was a child, an Apache elder taught him to use an “expanded focus,” where the task or objective is but a small part of a bigger picture. When we relax our absolute focus (i.e., the scientific process), we become more aware of life’s flow around us, and gain access to unanticipated assistance or insights. Similarly, scientists who restrict themselves to sanctioned formulas are essentially no more than super technicians. By contrast, those who subordinate the scientific process to their creative, expansive insights tap a vast experimental palette.

SUBJECTIVITY AT THE NATIONAL INSTITUTES OF HEALTH (NIH) With a $29-billion budget, the NIH is the world’s most prestigious and powerful biomedical agency. Through a complicated grant-application process, the agency funds most of the biomedical research carried out at our nation’s hospitals, universities and research institutions. When it comes to setting the nation’s biomedical agenda, NIH is the 800-pound gorilla. Although the agency’s public health contributions have been immense, its decision-making is influenced by a host of factors and agendas that go beyond strict objective science.

One of history’s better-known examples is German chemist Dr. August Kekule 19th century discovery of the structure of benzene. His breakthrough came during a hypernagogic state, after he dozed off in an easy chair in front of his fireplace. Most scientists fear that they’d be ridiculed by colleagues if they were to admit that a breakthrough was inspired through non-traditional means.

In 2006, the NIH received approximately 46,000 grant applications seeking funds that greatly exceeded the organization’s budget. At some institutes, for example, administrators funded only 10 percent of applications received. A multitude of NIH committees of expert scientists sort applications by merit and assign priority scores. Unfortunately, even some highly meritorious applications cannot be funded.

This observation does not suggest that science should lack rigor. As Louis Pasteur said: “In the fields of observation, chance favors only the prepared mind.” Yet over time, the best scientists have learned how to integrate the intuitive with the objective—the yin with the yang. For example, Crick was an exceedingly welltrained scientist whose insights, during a state of

I was in charge of this process at one of the NIH institutes, where I managed peer review of thousands of applications and witnessed, first hand, that the priorities of the teams is greatly influenced by the team’s composition, character, and overall dynamics, which reflect the highly subjective viewpoints and priorities of individual members. For example, if I was going to review clinical trial ABILITY 29

applications, I could recruit a team composed of scientists that emphasized study design (e.g., biostatisticians, epidemiologists, etc), or I could lean towards clinicians with more hands-on appreciation of the issues being studied. Each group would have very different beliefs based on what issues were important to them, and thus the proposal ranking would vary greatly. I played a part in which direction the pendulum ultimately swung. Based on such factors, it was easy to set up a highly critical or a more forgiving review team, as needed. If, for example, Congress had allocated a million dollars to fund a targeted research program in a specific fiscal year, and time was of the essence, I’d guarantee that the recruited review team, albeit highly qualified, would be more merciful in its critique. At NIH, I organized review teams in many different scientific disciplines, and, in general, was constantly amazed at how little appreciation one discipline had for the priorities of another, even when they were closely related. Although solutions to today’s problems will require openminded, multidisciplinary thinking, it seemed that everyone’s field of vision was rather parochial. The one discipline above this parochialism was supposedly statistics. Used to anoint a study’s validity, the discipline is viewed as transcending all subjectivity. But Mark Twain’s statement is more indicative of statistics’ true nature: “There are three kinds of lies: lies, damned lies and statistics.” Twain’s wisdom is reflected in a recent article by Dr. John P.A. Ioannidis, which discusses the flawed statistical assumptions inherent in many studies. He concludes that “for most study designs and settings, it is more likely for a research claim to be false than true. Moreover, for many current scientific fields, claimed research findings may often be simply accurate measures of the prevailing bias.”

SUBJECTIVITY AND INNOVATION: Although many disorders desperately need innovative solutions, NIH’s prioritization process is generally not well suited to generate them. For example, if only 10 percent of proposals can be funded, applicants are going to play it safe, developing a proposal that won’t be too challenging to the peer-review committee’s prevailing scientific paradigms. NIH has always had problems funding innovative research. As a rough analogy, its peer-review process is like choosing a movie to rent as a consensus decision with your wife, family and friends, all of whom have different tastes. To get everyone to concur in the choice will only guarantee mediocrity, not inspiration. The most exciting developments for many disorders are emerging in other parts of the world. Instead of paying attention to these innovations as worthy of further exploration, NIH tends to ignore or dismiss them. Even 30

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if there were hundreds of promising anecdotal cases, which there are, they don’t matter much to NIH, which is convinced of its own superiority. Although NIH-funded investigators are unsurpassed in some areas, they are falling behind in translating their knowledge into real-world therapies. They believe that they are sprinting for the gold medal, while ignoring that athletes from other parts of the world are not only running right next to them, but have also lapped them a time or two. Yet on whom does NIH rely to set priorities but the runners being lapped? These scientists’ careers rely more on allegiance to the status-quo than the priorities of the disability community. Finally, pioneering innovators throughout the world are frequently criticized because they haven’t published their work in peer-reviewed journals, but usually it is a frustrating, uphill struggle when they try. Throughout my career, I’ve consistently seen some incredibly mediocre, so-what research published, while most quantum leap material is rejected. We need access to innovative publications, where information, “warts” and all, can be disseminated to researchers who have the potential to provide further answers and insights. As the power of the internet continues to develop, professional journals, once the gatekeepers of knowledge, are also going to be lapped, as the masses quickly overtake them. “Nothing is more curious than the self-satisfied dogmatism with which mankind, at each period of its history, cherishes the delusion of the finality of its existing modes of knowledge...”—Alfred North Whitehead, English mathematician and philosopher

DISABILITY PERSPECTIVE: When I managed NIH peer review, we only had token interactions with the disability community. As such, our priorities were assigned primarily based on the evaluations of scientists, who usually had little appreciation of the true priorities of individuals with disabilities. Later, I became director of the Paralyzed Veterans of America’s Spinal Cord Research and Education Foundation. PVA had the heart and soul that was often lacking at NIH. Disability was personal: It was your colleagues, your bosses, your friends. Although all grant applications were subjected to rigorous scientific review, funding decisions were made by scientists or doctors in wheelchairs. Subjective priorities often varied considerably between able-bodied scientists and those with disability.

ECONOMICS: It is naïve to assume that the nation’s healthcare has been

shaped by merely objective science when you considering economic factors such as the following: Physicians obtain most of their information on medicines from the profit motivated pharmaceutical industry. Most medical consultants to public-health agencies have financial conflicts of interest with the drug industry that profoundly influences their decisions. There is a strong association between an author’s published positions on drug safety and their financial relationship to drug companies. Drug advertising has increased astronomically in recent years. Drug companies spend an average of $13,000 annually per U.S. physician to market their products.

THE IMPACT OF CONSCIOUSNESS All scientific observation—even at the most fundamental level—is affected by the observer’s consciousness. In this regard the statement, “I’ll see it when I believe it,” is more apropos than its commonly stated converse. Numerous studies have shown that consciousness exerts a significant influence on many different endpoints, ranging from bacterial growth to the heart patients’ outcomes. Double-blind clinical trials, in which neither the subject nor the physician knows who is receiving the active agent, are considered the gold-standard in research methodology. Although developed to reduce both investigator bias and patient placebo effect, the expectations of the blinded investigators have been shown to influence study outcomes. For example, when there is much enthusiasm for a drug, that excitement percolates into the study, producing more robust effects. Over time, when other, more efficacious agents have been developed and the original investigator’s enthusiasm has waned, the effects become less pronounced and can even disappear statistically. Studies have actually been designed to measure this effect. Specifically, it has been demonstrated that the beneficial effects that are present with a more enthusiastic investigator (e.g., the drug discoverer) at the helm of a double-blind study, can fade into insignificance under the direction of a more detached skeptic. The potential influence of consciousness on scientific observation is underscored by numerous quantum-physic theories, especially the famous Heisenberg uncertainty principle. Basically, this theory states that the more precisely the observer measures electron movement, the more uncertain he is of its position and vice versa. Although how much this truth determines our macroreality has been extensively debated, it implies that the

very act of observation, including the dynamics of the observation process, changes the object being observed. In other words, the observer and all of his subjective baggage are a part of the experiment. Echoing the theme put forth by colleagues, noted quantum physicist Dr. John Wheeler said of the behavior of photons: “No phenomenon is a phenomenon until it is an observed phenomenon. The universe does not ‘exist, out there.’ It is in some strange sense a participatory universe.” In his book, The Universe in a Single Atom: The Convergence of Science and Spirituality, the Dalai Lama relates many quantum-physic theories to Buddhist philosophy, including Heisenberg’s uncertainty principle. For example, under the key Buddhist theory of emptiness, “belief in an objective reality grounded in the assumption of intrinsic, independent existence is untenable. All things and events… are devoid of objective, independent existence.” Later, he notes that “anything that exists…does so only within the total network of everything that has a possible or potential relationship to it.” This philosophy suggests that the scientific observer and the observed are always connected and influence each other’s perceived reality.

CONCLUSION: In conclusion, there is no such thing as objective science; it is affected at all levels with varying degrees of subjectivity. Indeed, quantum physics suggest that such subjectivity can never be truly eliminated. Like grasping one part of a balloon, the process of progressively, more intensely focusing on one factor will inherently change the characteristics of another aspect. In spite of undeniable contributions, objective science is only one of numerous equally valid ways of looking at the universe. For many scientists, however, it has become equivalent to a religion in which a system of beliefs is dogmatically embraced with passion and devotion. Convinced of its superiority, the faithful eschew the truths obtained by others who do not practice the sanctified liturgy. If we are going to develop big-picture solutions to problems that plague us, we need the contributions of different, but synergistic, ways of looking at the universe. by Laurance Johnston, PhD Laurance Johnson has a PhD in biochemistry and molecular biology from Northwestern University. The author of Alternative Medicine and Spinal Cord Injury: Beyond the Banks of the Mainstream, he is a former FDA regulatory scientist and director of a division of the National Institutes of Health. Currently, he is the director of the Spinal Cord Research and Education Foundations, Paralyzed Veterans of America (PVA). For this article, he relied upon the support of many senior-level scientists, with and without disabilities, who provided advice on the concepts expressed in this article.

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HOLLYWOOD, YOU ALMOST GOT CHARLIE WILSON RIGHT

whiskey. Still he was an effective legislator, with just the right touch for shoving a bill through the Defense Appropriations Committee.

harlie Wilson’s War is the first movie I’ve seen in a movie theater since Raiders of the Lost Ark. I generally wait for the DVD, because what little eyesight I have left is best saved for viewing DVDs at home. But I couldn’t resist seeing how Tinseltown portrayed my old buddy.

The thesis of the book on which the film is based, George Crile’s Charlie Wilson’s War, is that Wilson leveraged his position on that committee to redirect hundreds of millions of dollars to the Mujahideen in Afghanistan, where they gradually crushed the Red Army, causing the fall of the Soviet Union.

When I was working in Vice President Dan Quayle’s office as his top advisor on accessibility and disability issues, Charlie was in Congress, where he served for about 20 years. He packed it in around 1997, when he thought the elephants (read: Republicans) were starting to stink up the place. From the very beginning, he always voted 100 percent for disability rights, women’s rights and civil rights. He also stepped forward early on to support the Americans With Disabilities Act.

Crile captures some particularly choice moments, e.g. the time Charlie took a belly dancer from Fort Worth, TX, to perform for the Egyptian minister of defense. Or another time when he dragged the chairman of the Defense Appropriations Committee, a real character who allegedly spat all the time and looked like a wild and crazy guy, off to meet Zia ul-Haq and the Mujahideen.

Lest it sound like all his glory lie in the past, Charlie is still very much alive. He had a heart transplant a few months back, and I hate that the sonofabitch still looks the same as he did 20 years ago, while time has never played kissy face with me. Tom Hanks did a great job playing this larger than life character. First of all Charlie is 6’4 and not one to hold his tongue. In a recent TV interview, he admitted to two flaws: his love of beautiful women and his fondness for 32

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I went to his 60th birthday party some years back, where he rented the entire top floor of a restaurant. The theme was inspired by the movie Casablanca, so all 300 of us tried to dress the part. I wore my fez, but Charlie one-upped us all: He gallivanted around in a suit that a tailor had made for him, which completely recreated Humphrey Bogart’s costume from the film. That get-up would’ve never passed muster in Charlie’s district, the 2nd Congressional in rural Texas. Growing up middle class in the town of Lufkin, he was the neighbor of

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 someone who served on the city council. Apparently the councilman didn’t like his dog, and one day Charlie’s found his best friend coughing up blood. The man never admitted that he fed the dog hamburger with ground glass in it, but Charlie had it on good authority. He was 14 years old at the time, and on election day he drove over to a particular East Texas neighborhood, generously escorting carloads of African Americans to the polls, telling them Mister So and So, who’s running for city council, killed my dog. Then he opened the door, so they could go vote. Guess who didn’t get reelected? Charlie knew how to win friends and influence people. Whenever I went to a reception for veterans who were disabled, paralyzed, blind, etc., I always showed up with one of Charlie’s Angels, as his staffers were known. They were extremely beautiful, intelligent women. They went along with me to these various functions because their boss wanted to know what was going on with veterans, and they always went back with the full report. While Hanks, as Charlie, is superb, I believe that in most instances he underplayed the flamboyance and controversy that swirled around the former Congressman. His office on Capitol Hill did not have any of the chaos portrayed in the film. His staff was regarded by one and all as not only the most lovely group of women on the Hill, but the most competent and hard-working. I took personal affront at the actress portraying Charlie’s

press secretary. She came across as a political lightweight and slightly naive. In fact his press secretary, Elaine Lang, had plenty of political savvy. I was best man at her wedding and am godfather to her first child. One day, Elaine and I stalked a beast that the movie neglected to include: Charlie’s large stray office cat. Legend has it that the cat jumped into the lap of a lobbyist one time and, realizing that the lobbyist did not like cats, did his business right there in the guy’s lap. I do know for a fact that the cat, like Charlie, loved to roam the halls of power. Frequently calls would come in from other offices that the cat was using their planter boxes as a litter box. One of Charlie’s Angels would be dispatched to retrieve the miscreant. I think if they do a sequel they should tell it from the point of the view of the cat. Luckily, the theatre wasn’t crowded the day I saw Charlie Wilson’s War, so I could whisper to my female companion at certain points, without being shhhhshed. This nearly always involved an outrageous bit of dialogue that I actually knew to be true. Then a playboy, he’s now happily married, and did I mention that the sonofabitch looks 20 years younger than me? by George Covington

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On this page and those following, award-winning director Julian Schnabel leads a crew on the wild adventure that takes place inside the head of a man who can only move one eye.

rom Salvador Dali to Andy Warhol, many a famous artist has taken a stab at directing movies, with results ranging from the eccentric to the moronic. But worldrenowned painter Julian Schnabel continues to make movies that are accessible and sure-handed. So far, he’s directed three acclaimed features: Basquiat (1993), about another celebrated artist who was his friend; Before Night Falls (2000), about a defiant gay Cuban writer; and his current release, The Diving Bell and the Butterfly (2007), about a magazine editor imprisoned within his own paralyzed body. In term of accolades and media noise, Diving Bell is Schnabel’s breakthrough film. At this writing, he’d won Best Director at Cannes, Best Director at the Golden Globes—where his film also took best picture—and had been nominated for an Oscar for Best Director. And this was just as awards season was getting started. Not bad for a Neo-expressionist painter from New York. When I spoke with Schnabel early one Monday at the Hotel Bel Air in Los Angeles, he was in his trademark bathrobe, chatting in Italian with someone in Milan. A big bear of a guy, it didn’t take much to get him talking about Diving Bell and the path that led him to it. Back in 1979, when his first art exhibit opened, one critic called it “a bonfire over Manhattan.” Schnabel’s paintings were outrageously bold and his ego even bolder. As he once famously crowed, “I’m as close to Picasso as you’re going to get in this f**king life.” In terms of self-regard, he was the Donald Trump of the art world. So why switch to filmmaking and take the risk of stumbling? He suggests that it was simply a logical extension of painterly mythmaking reborn as celluloid storytelling. Besides, he’s says, it was time to grow up: “I’m getting too old to be an enfant terrible,” he admits. Perhaps, as well, there wasn’t such a huge divide between the old medium and the new: “I make art because that is what I do, and making films is part of my work as an artist.” Still, it took him decades to get around to it, especially given that Schnabel recalls having an epiphany as a kid when he saw the Red Sea part in ABILITY 35

Cecil B. DeMille’s epic, The Ten Commandments. “I don’t know whether it was the red velvet robes…or the way people looked at that movie like they were looking at God.” Either way, the film made an indelible impression on him.

“I’m sure that it’s because I’m an artist that I knew, or at least thought I knew, something about the topic.” Diving Bell is not only derived from a writer’s memoir, it’s in many ways about the writing of that memoir, about the artistic act itself.

The artist likens painting to playing saxophone: You blow and see what comes out. “You don’t need to know if it’s good or bad when you do it. You can determine that the next day, so its total freedom.” Movies, on the other hand, demand more discipline of him. He must also play well with others. At the same time, the newer medium offers him a different kind of liberation.

Jean-Dominique “Jean-Do” Bauby was the fashionable, fast-living 42-year-old editor of Elle magazine in Paris, when he suffered a stroke in his brain stem that left him about as paralyzed as you can get and still be alive. The condition, called Locked-in Syndrome, rendered him 100 percent immobile and without speech. He could hear, think and blink his eyes—actually only one of his eyes, since the other had to be sewn shut. His only way to communicate with the world was by blinking that one eye. A dedicated speech therapist devised a system for him to communicate by the way he blinked, which allowed him to write his autobiography.

“When I’m editing,” he has said, “I feel like I’m painting. I know what I’m supposed to do and I throw the script away… Life has to happen to you.” The shifts between painting and filmmaking are akin to a farmer who plants carrots one season and potatoes the next, so the soil isn’t robbed of vital nutrients. His harvest to date has been real-life stories of artists struggling against oppression, which has become a personal theme.

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Schnabel had no idea how people who are disabled would react to his film. After it was done, he decided to show it to a friend in Paris who was recovering from a severe stroke as well. “I took a DVD over to his apartment and we watched it together. The bed he was on was shaking because he was crying the whole time. I

said, “Do you want me to turn it off?” He said, “No, please, don’t turn it off.” It was important for his friend to experience the full range of his emotions, Schnabel suspects. And his friend is not alone in that. “Maybe the thing that I’ve found most satisfying about this whole experience—and I had no idea that this was going to happen—is that people want to show this movie in stroke wards. In many screenings where there is a Q & A, a doctor will invariably come up and say, “Look, we’ve got to show this to young doctors and nurses, because we feel it gives them hope that there can be some kind of dialogue (with patients who are severely disabled).” Still it’s a daunting assignment to make a two-hour movie about a guy who can only blink one eye. It seems a crazy thing to take on. Yet Schnabel had been aware of Bauby’s story for years. He didn’t know him personally, but he knew a number of people in France who knew him. “In fact, his girlfriend once told me, “You were at the bullfights at Nimes, and we were right behind you. You didn’t see us, but we saw you.” Schnabel immediately knew the group she was with,

where they hung out, and so on. He had a sense of the life that Bauby—played by French actor Mathieu Amalric—had led. For instance, there’s a bullfight scene in the movie that isn’t in the book. It was something Schnabel knew that Bauby would have liked. But the director had no interest in depicting the professional life of a chic magazine editor. “I mean, if anything, that would have kept me from actually making the movie,” he says. Another inspiration for the film was Schnabel’s friend, Fred Hughes, who once ran Andy Warhol’s New York City studio, The Factory. An erudite guy who “started out in Texas and ended up with a kind of an English accent,” Hughes later got Multiple Sclerosis, which became progressively worse. He ended up, angry and abandoned, in a hospital bed in his living room, Schnabel related. This was around 1999; Bauby’s book came out two years earlier. So some days, Schnabel would go up to Lexington Avenue around 90th Street in Manhattan, where Fred lived, and read to him. “One day Darin McCormack, who was Fred’s nurse, ABILITY 37

gave me the book, The Diving Bell and the Butterfly. I didn’t read it at first. I kind of knew what it was about, but he gave it to me because I was so dedicated to coming and reading to Fred. I remember getting up sometimes, leaving and thinking, I’m ashamed that I can get up and walk out of here.

was almost like the wall in Gallipoli, where they hung everything that meant something to them. And I filled the room with flowers all the time. None of this was scripted, but I knew what that room had to be like. And I knew that when someone was talking to him, his eye would drift off and look at other things.”

Fred’s decline had a powerful affect on Schnabel:”I mean, I knew this guy went to all of these places with Andy. His life was so full. There are pictures of him with John Lennon and Yoko Ono, and he had cherished notes from Mick Jagger and Jerry Hall. I mean, he was everywhere, and he knew everybody.

Schnabel’s wife, Olatz, made the linen sheets and the silk pajamas for the film because Bauby had said, “If I’ve got to drool, I’d rather drool on cashmere.” Schnabel took him at his word.

“So I began by thinking about a film about Fred. And the thing is that the hospital room you see in the movie is really what I did to Fred’s room at the American Hospital. In Bauby’s room, they had pictures and things, but Fred had paintings in his room. What I did was pick etchings that I put upside down, so you’d have an interior world going on, from Bauby’s point of view.

The director somewhat understood the claustrophobic aspect of feeling locked in from his previous film, Before Night Falls. In it, there is a scene with Javiar Bardem—now drawing raves for his performance in No Country for Old Men—where Bardem’s character is thrown into a tiny, airless isolation cell, not much bigger than a coffin. Schnabel got in that cell with the actor and told the assistant director, “No matter what I do, don’t open that door for five minutes.” When the door closed, he quickly became overcome:

“There were pictures of my parents dancing at the Raleigh Hotel in Monticello, NY, in 1956, because my parents had always been in my other movies, and even though they were dead, I wanted them in this one. Marlon Brando’s boxing gloves were on the wall. It

“ ‘Let me out of here!’ I shouted. And they did, quickly. All the heavy breathing and the rolling of the eyes that Bardem does in the scene, that was me, for real. Having Locked-In Syndrome, I realized early on, was my worst fear.”

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Yet, after the stroke, Bauby turns an emotional corner in a very short time, deciding to go on with his life. In many cases of paralysis, this process can take years. Schnabel believes that in some ways his subject felt more alive after the stroke than before. The turning point came when Bauby asked himself, Had I been blind and deaf, would it take the harsh light of disaster for me to find my true nature? “That’s what he was looking at—the harsh light of disaster. And he was on the far edge of life. And that’s the point in the film where the image of the massive snow glaciers come in. My editor said, ‘Why are we putting this here?’ And I said, “Because this is when he decides he ain’t gonna just lay there anymore. This is where he decides, ‘Hey, I’m really gonna be bored out of my mind and drown in this, or I’m going to do something.’” Bauby lived one year and three months after the stroke, and for at least the first 30 days of that time he was unconscious. But just as he embraces life, there is also a moment where he says, “I want death.” Marie-Josee Croze, playing Bauby’s speech therapist, was reluctant to do the scene in which she gets angry with him for giving up. Schnabel directed her to walk out of the room, and then come back in and apologize to Bauby, if that was the way she felt. In a completely improvised and moving moment in the film, she does just that. Bauby, Schnabel says, “realized at that moment that he was quite superficial. It wasn’t the people around him who were superficial. It was him. He realized that others really cared about him—these were real relationships.” The former magazine editor “told a friend, ‘I’m not the same guy. I’m reborn as somebody else.’ Bauby felt he was selected and that he had a choice. I think he felt like, OK, I’m a regular guy. I’ve got a regular job. But here I have the chance to write something that might be a really great work. I could be a great artist. Not artist with a capital A, but he could transmute his life into something that could be used by people.” Schnabel tries to communicate this notion to audiences at screenings. He’ll say, “I don’t know how many people are here, but maybe somebody likes to write. Maybe somebody’s got something that they really would like to do. How many appointments do you have today? Do your kids need something? This guy didn’t have to do anything except think about what he wanted to write every day. And that’s all he did. So he thought about it when he woke up and when he went to sleep, and he created this job for himself. And that’s why he was able to do something so extraordinary: to report back from a place no one has ever written about. “

What Schnabel himself learned was about living in the present. “Playing Bauby, Mathieu Amalric understood that, and he made me understand it,” Schnabel says. “He had a patch over one eye. He had a piece of plastic in his nose, a bite plate in the bottom of his mouth, his lips were glued, and he had to lie still for a very long time. And when you lie still like that, people think you’re not there. At first this makes you angry. Then you close your eyes and the space gets bigger and you can have a dialogue with yourself about all these people who are outside your reality. And that’s where the sardonic humor comes from.” The film’s humor is mentioned in every review, as is the fact that the movie is neither mawkish or sentimental. As Schnabel says, “It could have easily been a triumphof-the-human-spirit kind of movie, but it’s not because it’s filled with humor. Plus, the guy was not a saint… sometimes the truth was brutal, but there is no time for lying. I mean, do we have to get to that state before we can tell the truth to people we are close to?” The presence of Max von Sydow as Bauby’s father was pivotal to Schnabel. He made the film not only because of his experience with Fred Hughes, but also because of his relationship with his own father, a working-class immigrant from Czechoslovakia. “My dad and I were very close. He died of cancer at 92, absolutely terrified of death. I couldn’t do much to help him.” “If my father could have seen this film,” he says, “I think he might have felt like there was some peace in the transition between this state and the next, and he might not have been so scared. “My father died on January 17th, 2004. I got the Diving Bell script in December 2003. At first I didn’t want to do a movie about a guy who lives in his head, and yet my father lived in his, and I’ve always lived in mine. So I came to realize that this was a bigger part of reality.” This kernel of truth helped the painter/director connect more deeply with his subject, rendering it in a way that is beautiful and resonant. “When you start to use your brain, your imagination, it’s amazing how deep the feelings can be. Consciousness is life. If you’re unconscious, you’re not here. That’s why memory, for Jean-Do Bauby, became his life, and why he jumped at the chance to have a 20-20 retrospective vision of his whole existence.” by Allen Rucker

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Her many roles include activist, aunt, actress and director (whoops, that last one was supposed to start with an â&#x20AC;&#x2DC;a,â&#x20AC;&#x2122; too. Darn it!) Inset: Cheryl Hines with Larry David on the set of their long-running HBO hit, Curb Your Enthusiasm.

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heryl Hines, costar of Curb Your Enthusiasm, her friend from high school, and two ABILITY staffers are at a Beverly Hills restaurant, trying to eat their lunch in peace. However, a wrecking machine is munching away at the roof of a building across the street. Although it’s loud and annoying, Hines maintains her focus and her sense of humor as she speaks passionately about her film and TV projects, as well as her ongoing volunteer work for United Cerebral Palsy (UCP.) Here she talks with editor-in-chief, Chet Cooper, managing editor, Pamela Johnson, and her gay friend, Paul Beckett, who is not to be confused with her straight husband, Paul Young. Got it? Good. Now let us proceed. Chet Cooper: How did you get involved with United Cerebral Palsy (UCP)? Cheryl Hines: Well, my nephew was born with cerebral palsy about four years ago, and my family was in a state of shock. We had never heard of cerebral palsy. Or perhaps we’d heard of it, but it was never part of our lives, and we didn’t know what to do. Cooper: How early was he diagnosed? Hines: He was about a year-and-a-half old. For much of that time, he was in the hospital, and there were weeks when he was fighting for his life. ABILITY 41

Pamela Johnson: What were the symptoms? Hines: Respiratory problems, mostly, I think. There seemed to be a myriad of difficulties. He was born three months premature, and weighed only two pounds. When I found out the diagnosis, I literally looked in the phone book, found United Cerebral Palsy and asked if I could come in. Cooper: This is in LA?

Johnson: You started off seeking information on how to help your family, and now you’re at all the major UCP events. That’s what one of the folks at UCP in D.C. said: “She’s at all the major events, she’s at this gala, she’s at that gala.”

Hines: This is in LA, but my nephew—and much of my family—lives in Florida. So when I called, I talked to Dr. Ron Cohen (executive director, UCP Los Angeles). He said, “Come down and you can ask me whatever you want.” And I sat in his office and we talked for a while. He said, “I know that you and your family probably feel like this has never happened to anyone else, and you’re going through this alone, but you’re not.” That’s what UCP does: help people find the proper resources forwhat’s the word…?

Cooper: She plays poker.

Johnson: Coping?

Johnson: Is he a hottie?

Hines: Yes, coping. It’s certainly helpful, because you do feel like, if other families have figured out a way to embrace this, then we certainly can follow that lead. They also help you find different sorts of therapy. So eventually my brother and sister-in-law took my nephew, Michael, to the UCP in Orlando, and it really changed everyone’s life.

Hines: He’s hot. (laughs) Oh, dear! What I mean is that he was very warm, and invited me to get as involved with UCP as I wanted to be. I was certainly open to staying involved, because I suppose any time a celebrity is affiliated with a cause, it seems to elevate the visibility. So I started getting involved, and fell in love with the team in Washington DC. I love them so much. I go to DC every year.

Michael started getting therapy and growing stronger. He’s had a g-tube in his stomach since he was born; he still does. However, now he can eat baby food, he can drink from a bottle, a water bottle or a sippy cup, and he’s much happier. The first few years of his life he was crying what seemed like 24 hours a day. He was inconsolable, and it was difficult for everybody. Of course, as a parent, all you want to do is console your child and make him feel better, and it was very difficult because they didn’t know how to help. So UCP certainly enlightened us that way. Cooper: William H. Macy is also a major supporter of UCP. He’s a great actor. You two did a movie together… Hines: We did this film called Bart Got a Room. Cooper: As in The Simpsons? Hines: It’s not The Simpsons, but that name, yes. Bill and I play a couple who have been divorced, and our son is looking for a date to the prom. It was the first time I’ve worked with him, and it was a great experience. We shot it in Florida. Johnson: Do you try and do as much as you can in Florida? 42

Hines: I do. Of course there’s my family, but I also go to Orlando every year for UCP’s big gala. Last year they auctioned off an opportunity for someone to play poker with me, which ended up just being a cocktail party.

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Johnson: “She did the entertainment…” So what made you get so involved. Hines: Well, I was certainly taken with Ron Cohen . Cooper: Was he married at the time? (laughter)

Cooper: Go on the Hill and talk to our leaders? Hines: Yes. Beckett came with me one time. Paul Beckett: We were high school friends in Florida. Johnson: You’re a TV person, too, right? I know I’ve seen you. Beckett: Well, I do what I can. I do commercials. Johnson: I know I’ve seen you a lot. Beckett: In Washington, we had dinner and she spoke to Congressmen and women. Hines: Right, I talk to different policymakers about the rights and needs of people with disabilities to make sure that money is allocated in the right way, and to try to inspire people to make changes. Cooper: How do you know to whom you should talk? Does UCP facilitate this? Hines: Oh, yeah. Believe me, they are very involved in the political aspect of disabilities and the changes that we’re trying to make. So they know exactly whom to

talk to and who are the swing votes and the minority whips. I learn a lot.

are really submerged in the everyday —

Party over here! Clockwise from left: Hines, Lindsay Berkowitz, who lives in accessible housing subsidized by United Cerebral Palsy of Los Angeles, actor William H. Macy, and Ron Cohen, PhD, CEO of UCP L.A.

Cooper: They’re changing diapers… Johnson: So from you making that first inquiry to now, four years later, how did you become so deeply involved? Hines: Well, you know, between Dr. Cohen reaching out to me personally, and UCP helping my nephew and my family in a way that I could never imagine, it came naturally. I’m very close to my family, I’m close to my nephew, my brothers, my sister, and all the people that I’ve met along the way I find to be interesting, intelligent people. I like to hang out with them and get to know them. So it’s just been a natural progression for me. Cooper: Was this the first advocacy work you’d done for a cause? Hines: Mm-hmm. Yes. Cooper: So most of your life you’ve been self-centered? Hines: Very self-centered. (laughter) And now I don’t think about myself at all… You know, there is a light bulb that goes off when your life is touched by something such as a disability. I’m sure the onset of different extreme medical conditions makes you think about the world differently. Makes you see things differently. You notice when there’s wheelchair access and when there’s not. When I go to a concert, I look around and think about how challenging this must be for someone who’s in a wheelchair, trying to make their way through the crowd. I also think about what the family is going through, and what they have to navigate through. When it’s a personal journey, I think people probably tend to get more involved, and because I was in a situation where it wasn’t my child and I was one step—I guess “removed” is the best word I can find—I could actually spend more time and energy on advocating issues, whereas I think probably a lot of the parents that

Hines: That’s a nice way of putting it. I don’t know if that’s exactly the case, but yes. They’re needed in an immediate way. So while my brother and sister-in-law are filling out health forms and insurance claims and making hospital visits and making sure they have the right equipment and going to therapyJohnson: You’re on the Hill… Cooper: And luckily, as you said, you have the celebrity status that opens doors. Hines: That’s what my friends in DC say when we go to different Congressmen’s offices and they have a fire going and we sit down in their office. They say, “We never get to sit by the fire!” So it’s nice. It probably does help. Johnson: Can we talk a little bit about the film? You just directed your first feature. Hines: I just directed a film called Serious Moonlight, which was written by (the late) Adrienne Shelly. It stars Meg Ryan and Timothy Hutton, Kristen Bell and Justin Long. It was a pretty amazing process. We shot it in three weeks. It was very intense. Johnson: Had you directed anything before then? Hines: I’d directed television before, but I didn’t know what I was getting into. (laughs) I learned quickly! It was very, very challenging and very, very rewarding. Cooper: Who’s behind that film? Hines: It was produced by Michael Roiff and Andy ABILITY 43

Ostroy, who was married to Adrienne, and really wanted to produce this film that she had written. And Michel Roiff was one of the producers of Waitress, the movie that I was in with Adrienne. That’s how it got started. They raised the money privately. When we finish the film, we’ll hopefully sell it to a huge studio. It was a pretty amazing experience.

Cooper: One of the things I’ve always tried to figure out is the way the show is ad-libbed.

Johnson: What’s the plot? Hines: A man is trying to leave his wife, and she basically takes him hostage and says, “No, you’re not.” It’s a bit of a dark comedy with a little romance. Very little.

Hines: Larry writes the story outline, so we know what’s gonna happen. We just don’t know what the dialogue is going to be. It’s improvised, but we know that the episode will be about, say, Larry accidentally killing somebody’s dog or something.

Johnson: This is your final season of Curb Your Enthusiasm?

Johnson: And you know what the point of a particular scene is…

Hines: I don’t know, perhaps.

Hines: Mm-hmm. Right. So before we shoot, we might have—I don’t know, maybe five sentences saying, “These four people are going to sit down for lunch. One of them will be talking about how awful their life is, and the other three will notice the building behind them being demolished.” (laughter)

Johnson: They’re still kind of figuring that out? Hines: You never know. Last time I talked to Larry, he said he was thinking about doing another season, but he’s not sure. Johnson: What have been the highlights of that run? Hines: Curb Your Enthusiasm changed my life. Suddenly I was on a critically acclaimed television show with Larry David, one of the most successful men in television. Beckett: And you were nominated for an Emmy twice. Hines: I was nominated twice. I mean, it opened doors for other projects and a film career, and it just clearly changed my life.

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Hines: Right. Cooper: How do you do that? The show is always so wonderfully done.

Johnson: To what extent do you think that your background in improv helped you secure that role? Hines: I’m sure if I didn’t have a background in improv, I wouldn’t have gotten that part. Because, like we talked about, the show is completely improvised, so it can be a little daunting for an actor who doesn’t improvise to walk into a room where they don’t know anything about who the character is or what the situation is and then have to begin a scene. So I was studying at the Groundlings Theater and performing there at the time when I got this part. I’m sure I wouldn’t have gotten it if not for that.

Beckett: Have you ever been there, the Groundlings? Johnson: I have not. Beckett: It’s neat. It’s on Melrose, a red brick building at Fairfax. Hines: Oh, it’s so fun. You guys would love it. Cooper: I don’t tell too many people this, but most of the time in my day, I go around unscripted. Hines: Not Paul. He gets up and he writes a script of his entire day. We’re on page 15. (laughter)

politically incorrect thing. I think it’s fun when Larry does that. And Larry has been—I don’t think if he would mind me saying this, but when we cast the show, any time that there is someone with any type of disability, he likes to find actors that are really in a wheelchair or hearing impaired or whatever it is. I think he has a great deal of respect for people, regardless of what you see on television. (laughs) Cooper: Yeah, he does play himself as a very self-centered person. It’s interesting, that oftentimes there isn’t much there to like about him. Hines: No, no.

Beckett: I like to be prepared. But Groundlings is a fun show. A lot of people have come out of there, Will Farrell, Peewee Herman, Phil Hartman.

Cooper: I just wonder how you stay with him.

Hines: Kathy Griffith.

Beckett: Yeah, in the last episode she left. Are you guys separated or divorced?

Hines: Well, by the last season, I finally left him.

Johnson: Cheryl Hines. Hines: Well, so far, we’re just separated. Cooper: What did you think about that episode where Larry uses a handicapped stall? What was your take when you saw that that was going to be part of the plot? Hines: Well, what I love about Larry is that he has fun and makes fun of everybody, from himself to someone who can’t hear to—nobody’s safe. I thought it was funny. I think probably we’ve all had moments of going into the wrong stall, being desperate and doing the

Cooper: Is that the one where he kept calling the restaurant and saying, “Can you tell the hostess—”? Hines: Mm-hmm. What were your thoughts on the episode about the bathroom stall? Did you find it offensive? Cooper: Well, I’ve got a dark sense of humor, so I like ABILITY 45

Beckett: Because one time I forgot to say I was Cheryl’s friend, and when we walked away they went, “Does Cheryl know her husband’s gay?” (laughter) Johnson: Did you guys meet at Groundlings? Cheryl Hines

Hines: We met in high school, actually.” Johnson: I meant the other Paul. Hines: Oh, my Paul. The straight Paul. We were both on the board of directors at the Groundlings. He’s a manager and a producer, and he’s more of the business/creative sort, whereas I just fall in the creative category. Johnson: And your daughter is Catherine Rose? Hines: Yeah. Catherine Rose. She’s gonna turn four in March.

things that bring attention to issues.

Johnson: So your nephew and your daughter were born how far apart?

Johnson: What’s coming up for you?

Cooper: Three thousand miles.

Hines: I am editing, and in post-production on the movie I directed, Serious Moonlight. We’ll see what happens with that. I have a movie coming out in March called The Grand. It’s about poker players.

Hines: (laughter) Within one year, my sister had twins, my brother and sister-in-law had Michael, and I had Catherine, so there were four kids born within one year in my family.

Johnson: Are you a big poker player?

Cooper:Do you know what kind of therapy Michael gets?

Hines: Yeah. I love poker. (laughs) So that’s exciting. I’m in an animated film called Space Chimps. I worked on that this morning. That’ll come out in April, I think. Jeff Daniels is in it, Kristin Chenoweth, Andy Samberg. I’m producing a television show called Hollywood Residential that airs this month. I’m the star. It’s very funny. It’s a sitcom about this crew that goes into different celebrities’ homes and remodels something, and usually something goes horribly wrong.

Hines: I know that they’ve done therapy where they’re trying to teach him how to swallow. He’s also talking. He says, “Mom, Dad, more, yes, no and Paul.”

Beckett: Paula Abdul is in it.

Cooper: What kind of mobility does he have?

Hines: It’s going to be a different celebrity each week, yeah.

Hines: He struggles with his upper and lower-body strength. He’s in a wheelchair. He can transfer objects, he can reach and he is learning to maneuver his hands and arms. But he has a ways to go in that department.

Johnson: So you’re basically going into a different celebrity’s house and wrecking it? Hines: Yeah. Johnson: That’s cool. Now, your husband’s name is Paul also? Hines: It is, yeah. Johnson: When you said, “This is my friend Paul,” I was like, “Hmm.”

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Beckett: He’s referring to her husband. Johnson: So he’s not talking to you? Beckett: He calls me Elmo. (laughter)

Cooper: There’s a lot of different assistive technologies that allow people to navigate a power chair. Just the slightest little movement can allow them to do things. Hines: It’s my understanding that those types of devices are so pricey that when you’re talking about a four-yearold who’s going to grow out of something— Cooper: If they actually want to do something in that area, R.J. Cooper is the guy to see. His whole life has been devoted to creating unique devices for kids’ mobility.

And he understands cost. He’s doing this because his heart’s there, even though it’s his business. Hines: I know that, at every turn, it’s been a fight for my sister-in-law and brother to get the insurance company to cover the costs of all kinds of devices. It doesn’t come cheaply. Cooper: No, it’s a big issue, and I’m sure that’s one of the things that you talk about on the Hill. Hines: We do, yeah. What’s very interesting about my family is that my sister has a doctorate in education. She teaches at the University of Central Florida, and she hand-makes devices for Michael. So for his birthday, we chipped in and got him a little—I guess they are electrical cars for little toddlers? And she spent a lot of time making a harness for him so he can sit up in it, and his brother, Griffin, can help him drive. But the two of them together in that little car are so cute. But to my knowledge, they don’t mass-produce something like that. Cooper: This is what R.J Cooper does. Hines: I’ll have to take a look at that. I went to the United Cerebral Palsy conference, and they had some different people exhibiting their products. It was very interesting. There was a great keyboard that was specially for children. It had different images like Spongebob Squarepants, done by the artist who does that cartoon character. So now if you’re a kid who has a hard time speaking, and you’re at school and want to talk to Spongebob, you can press a button that says, “Come play with me,” and it’s Spongebob’s voice saying that. Suddenly you’re, like, the cool kid. Cooper: There’s so much going on with assistive technology, for example, text-tospeech, voice recognition. So that’s all going to benefit people with different disabilities, your nephew included. Kids are already benefiting from some of that, as you said, where you push a button and Spongebob speaks. Hines: It really is going to take the mainstreaming of some of these devices for them to be affordable enough for people with different challenges. I think we’re moving in that direction. Paul, my other Paul, and I have a friend— Beckett: We call him “straight Paul.” Hines: Straight Paul has a friend who has ALS, and so that’s been very hard. His name is Scott Lew. He’s an amazing person. He’s been living with ALS for probably four years, and it’s been interesting to watch what’s happening to him physically. Cooper: What’s the name of the movie? Hines: Bickford Shmeckler’s Cool Ideas. He wrote and directed it. Johnson: So doubling back to your nephew, what life are you envisioning for him? Hines: A happy life. I think that’s really what it’s all about, finding your happiness and helping families find their happiness and what works for each person and each family. I envision for Michael, just what my sister is doing by individualizing a toy for him, helping him play with the other kids. I want him to enjoy his family and his cousins and his brother and not be the one sitting in the corner. Nobody wants that. So we keep exploring new technologies and therapies to maximize his abilities. www.ucp.org ABILITY 47

PART 2

hen last we sped up to catch road warrior Ricky James, he was gunning it around a Motocross track on a souped-up bike, and enjoying the occasional thrill of a back flip off a 20-foot-high ramp into a forgiving vat of foam.

Even with a blow to his T7 vertabrae that paralyzed him from the mid-chest down nearly three years ago, he continues to leave worrying to the sissies. James, 19, is currently training for the Iron Man competition, which entails four miles of swimming, 104 miles on the handcycle and 26.2 miles of racing in a wheelchair. His trainer and friend, David Bailey, who was also in a paralyzing Motocross accident roughly two decades back, nabbed the top prize in the 2000 Iron Man contest, so James has a powerful coach and personal motivator. In Part 1 of this story, which ran in our last issue, the athlete shared how he got back on his bike

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just four months after he was hurt, the loving support of his family, and his unwavering faith that an effective treatment for spinal cord injury will be found surprisingly soon. Here, he and Chet Cooper, editor-in-chief of ABILITY Magazine, talk about those terrifying moments after a friend crashed into him at the track, and James was carried away by the emergency medical team. …

THE HOSPITAL Cooper: So there you are, on a stretcher being wheeled in… James: Right, and as they lift me from the stretcher to a bed, some guy had my arms, and the other dude had my legs, but there was no support underneath, and I was like, “Hey! My back is broken. Are you stupid?” Cooper: The accident happened in Texas? James: Yeah. The first hospital they took me to wasn’t equipped to deal with my situation, so they airlifted me to another one. I was in ICU for four days and sat up on the fifth. Then they flew me to another facility. They said I had to be there for three weeks, but after 10 days I flew out on a private jet back to California. They said I would be in rehab for six to eight weeks, but I moved through that in just three weeks. Then I went to Las Vegas. There are five, big amateur nationals, and one was coming up in Vegas. (I was at the first one when I got hurt.) My goal was to get through rehab, so I could go to those nationals in Vegas. Everyone was so supportive. When I woke up in ICU, people had raised $60,000 for me out at the track. I was so driven to get back out there that I worked especially hard in rehab. I had sustained other injuries during the accident as well, so I had to go through rehab with a cast on my right arm, four broken ribs and a punctured lung. But I still left after five weeks—without my doctor’s permission—to head to Vegas with my dad. That night I rode on the roller coaster at the New York, New York hotel, where I stayed, and the next day one of my really good friends drove me around the amateur national track on his 450. So already I knew I’d be getting back to riding. It was just a matter of time and figuring out the best way to do it. Cooper: Hmmm. I wonder…Why do “Vegas” and the term “taking a big gamble” come to mind? James: (laughs) Yeah, It wasn’t too smart to go on that roller coaster the first day out of the hospital. But my back is tough. And then, exactly one year later, I rode two laps around the same track where I was injured. I whipped around the corner that I had crashed into, took a quick look back at it and then kept going. It was cool. Cooper: You can actually whip? James: Yeah, on bigger jumps. Cooper: I just started riding again after many years, so I don’t know how to do that yet. I was told that one thing I’m not doing is holding my knees to the tank, not positioning myself up forward enough. But everything I’m told to do, you’re not able to do, so how the heck do you make it work? James: I don’t know. I’ve been riding since I was five. I rode BMX from eight to 12, so I’m always comfortable on anything that has two wheels. To whip it, you have to slide off the lip or the back end. It almost feels like I’m losing control, but I just have to balance down on two wheels.

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RICKY’S NEW LIFE Cooper: So KTM Sportmotorcycle’s going to sponsor you? James: Yeah, it just happened recently. They’re going to give me a bike. I can build it and make it deluxe at the factory race shop, using all the parts I need. And then they have all the machines to do welding, machine brackets for my seat, make aluminum Nerf Bars—whatever I want. Cooper: So it’ll be a lighter bike.

Ricky with his new best friend Paris Hilton. Photo from the Life Rolls On Foundation fundraiser.

Cooper: But how do you bring it back, then? James: I don’t know. (laughter) It comes around, and you tug and pull. Everything has to be fluid when you do it. For me, it’s second nature. One of the biggest whips I’ve thrown was out at Competitive Edge for Transworld Motocross magazine. That was crazy. I was just trying to slide as much as I could off the lip. The thing was out of control; you could see my tire marks off the lip. But it was cool. Cooper: You know what we’ve got to get you to do? We have a nonprofit called ABILITY Awareness, kind of doing what you’re doing, awareness of… James: …spinal injury? It’s as important as research to make life better for the person who is paralyzed. If people around them knew what the situation was about, that would help. Cooper: Yes. It’s about changing attitudes, allowing an equal playing field. So if you want to go out and get a job, and there are two equal candidates—one in a chair, and one not—they don’t just rule the person in the chair out and say, “I’m not sure if that’s gonna work in our company.” That’s where the ADA and anti-discrimination laws come in.

Ricky falls at Milestone MX park in Riverside, CA. He’s strapped to the bike, and his custom roll bar takes the intial impact.

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James: Yeah, I was thinking about a little mountain bike with a shock in the air box for a little cushion. That sounds totally doable with the factory behind me. It’s a sweet opportunity. Cooper: Maybe they can help you with your automatic kickstand. James: Yeah, they can do that. And it’ll be better for the back flip. I did the back flip on the motorcycle I got hurt on, but my KTM machine will be faster and lighter and way easier to flip. Cooper: You did the back flip off a ramp? James: Yeah, a metal ramp into a foam pit. It’s a jump of about 20 feet. You can see it on YouTube; just search ‘Ricky James back flip.’ I was lucky not to land upsidedown, because that would’ve hurt a little bit. The pit is where you learn to do crazy tricks, like 360s. You could also go on Google and search “double back flip.” It’ll blow your mind. Cooper: Let’s talk about your dreams. James: I was telling a friend last night that everything I’ve dreamed has come true. I’m so thankful to be doing what I’m doing. I said I want to do a back flip, and I did that. I wanted to do the Baja 500, and everyone said I was nuts, but I proved them wrong. I love proving people wrong. It’s my drive. If someone says I can’t do it, that’s just more reason to try. Cooper: Like if someone says ‘I don’t think you’re going to be able to walk again….’

Ricky’s father (in green) and friend give him a hand.

James: A lot of people say that. We’ll see. But either way, I want to keep moving forward with these great opportunities. I’ll hopefully roll one of them into a living, get some good sponsors, and go into the schools. I’ll find an angle on it. This truck racing is cool, and I’m excited to get a monster truck built for me. But right now I’m at ground zero. I could go into stockcar racing, late-model racing … I’d like to move up to the next level and prove myself. When I’m racing in a car, I’m sitting down, so other drivers don’t have any advantage over me. I did pretty well the first race, so I’m looking forward to more racing and being competitive again. My dad’s backing me with the race truck right now, so I’m gonna give it my all every time I’m on the track. Cooper: Well, there’s definitely money in NASCAR. James: Yeah, no paraplegic has ever done that before. That’s my true dream, honestly man. I’d blow all the people I used to race in Motocross out of the water. I thought it was a bummer getting hurt, but to go back and do something like that would be amazing. Cooper: Matter of fact, it might even be an advantage in a sense. Isn’t weight an issue? James: There’s a minimum weight limit on the car, so I’d probably have to add weight if I was too low. But that is a good point. I actually had to add weight to the little shifter car I have. The less you weigh, the faster your car will go. It’s like being a horse jockey.

TECATE’S SCORE BAJA 500 James: I raced the Baja 500 last year and hurt my shoulder, so today is the first time I’ve ridden since that. I rode my hand cycle yesterday for the first time, and I’m starting to get stronger. Cooper: In the Baja race, how many times did you go down? James: About twice. One time my shoulder popped out of the socket. It hurt so badly. My seat also popped out and my shifter broke, so I couldn’t get it to downshift— that’s another reason I fell. At mile 20 I was like, “I don’t think I can do it.” I thought I was going to have to pull out because it was so dusty. I couldn’t see anything. They had a record number of entries this year—over 500, so they started them 15 seconds apart instead of 30.

So it put everyone closer together, and the dust was overwhelming. I think I had the gnarliest section, too. There was about a quarter or a half-mile of this deep silt. Cooper: Did you have somebody riding with you? James: Yeah. He started the ride behind me. I was 120 and he was 121. I should have had two guys helping, particularly to get on the bike. But we got it done. I finished 120 miles in four hours, and my team went on to finish 13th out of 22. The race was 12 hours and 18 minutes total. So we did pretty good, considering everything. Technically, I lost about 45 minutes with all my falls and getting back up and everything. If I hadn’t fallen, our time would have been 11 hours and 15 minutes, and we would have gotten 11th. So my mess-ups really didn’t cost us too much. But, I don’t really want to race any more. I can’t go as fast as I used to, and I can’t go as fast as the kids nowadays. Cooper: So why did you do Baja? James: That’s a race I know and it’s more about endurance than speed. In truth, I’m not happy with what I did in my career before I got hurt. I was one of the fastest in my class, but that’s not good enough. I want to be the fastest. That’s what’s so awesome about Motocross, there’s always someone faster than you. It’s the work that you have to do to become fast that drove me. Same thing with truck racing. There are a million guys out there who can do it, and a million people out there with money to get awesome cars. I’m 19, I don’t have money, but I’ve got heart and determination. Cooper: Did you ever meet Ricky Carmichael? James: Yeah, I did, and it was cool. I met him before I got hurt. I raced in Florida, and we were on our way home and Shift, my gear sponsor, invited me out there. James Stewart and Ricky Carmichael were there, and was like, “Hey, I’m Ricky and I’m James, both of you!” I got a picture with them. Right now, I’m just trying to move forward, doing what I love and being a role model in the spinal cord injury world. I want to do something important. I have something to give. I want to raise awareness around spinal cord injury like Lance Armstrong raised awareness around cancer.

Once righted, Ricky is back in action, passing everyone on the track.

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PUFF THE MAGIC AIRBAG

here’s been an upsurge in deaths on motorcycles in recent years. Though more research is needed to determine exactly why, we do know that sales to Baby Boomers—particularly to people in their 40s and 50s—have taken off in the last 10 years. Some are riding for the first time, others getting back in the “saddle” again. Studies seem to suggest that some don’t believe in wearing helmets, overestimate their skill level or indulge in alcohol. Heavyweight custom vehicles also tend to be overrepresented in fatal accidents. There’s no reason most people shouldn’t be able to avoid a majority of the collisions. With better tires and brakes, better suspension and handling, as well as other helpful technological advances, motorcycles are safer than they were five or 10 years ago. In recent years, Honda has introduced combined (or linked) brakes on scooters and the GoldWing touring bikes. These systems combine front and rear brakes, which help those riders who are overly conservative when using their front brakes, for fear of going over the handle bars. Though that’s unlikely, by relying mostly on rear brakes, they tap only 30 percent to 40 percent of their braking potential. So combined brakes afford more stopping power. Antilock brakes, also available on Gold Wing top models, help with traction, shorten stopping distances, keep bikes balanced on turns, and are great for riding in rain or snow. Admittedly, a car does offer you a lot of protective external hardware that motorcycles can’t, yet the latter have acceleration and braking capabilities that only upper-end cars can match. Motorcycles also have unique accident-avoidance benefits. Given their slim profiles, if they get caught between a car and the curb, for instance, they can probably squeeze through, but if you’re in that same situation in a car, you probably won’t be so lucky. My sense is that more people are riding motorcycles and scooters as gas prices rise. What I see as I go back and forth to work in Southern California, is more people commuting on motorcycles, which were initially bought for recreational use only. Some drivers I pass are on our GoldWing, which comes in four classes, with airbags available only in the highest-end model, which retails for around $25,000. For the airbag to work optimally, the accident impact needs to

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Honda’s Jon Row and his bride, Sheri, rev up for the honeymoon

happen within a limited angle. Whether it deploys and how well it protects, also depends on if the object being struck is moving. If you have to get hit, a 90-degree angle is the “ideal” for maximum protection. But there are situations in which an airbag is not going to help you at all, for example if the rider and motorcycle go under a vehicle, or are hit in a side-swipe motion. Since we introduced the airbag in 2007, there are three deployments that we know of—one in Europe, two in the US. Two of those riders benefited from the airbag, the third, side swiped from the rear, did not. (Although that person did live.) In the latter case, the person was hit at a 75-degree angle from the left, when it pulled out in front of a car. The airbag deployed coincidentally. We consider the airbag to be the third layer of protection. The first is the vehicle’s accident-avoidance mechanism: good brakes, good handling, good feedback from the controls, a good rider-position layout and good tires. The second is the rider’s skill and training, which entails driving and thinking defensively. There’s also protection in the form of equipment: leather boots, leather gloves, leather jacket. Products made out of incredibly durable Kevlar material, also have high abrasion-resistance, but you may slide further than you’d like.

In one of the instances where our airbag deployed and the rider benefited, the gentleman was not wearing a helmet, jacket, boots or gloves when he went down. Though he walked away without a scratch, we strongly advise against having so little physical protection, because you could be hit by another vehicle, run over radiator fluid and slide or lose traction riding over gravel. Not getting hurt is also key to enjoying your vehicle. I imagine that we, and possibly others, will introduce airbags to more products in the future, but the market will ultimately decide. So far there haven’t been many deployments, so there are not a lot of people walking into a shop and saying my next bike will have an airbag, because I know three people whose lives they’ve saved. While we do plan on putting airbags in other models, it isn’t practical to put it in every motorcycle. A touring bike is the easiest and most logical, since a rider racks up lots of miles, is exposed to more traffic and rides upright. There are also lots of places to store an airbag on a touring vehicle. On a super sport motorcycle, for instance, your chest would be directly over the airbag, so we’d have to figure out a different place to put it and have it still do the job we intended. I’ve been riding since 1967. I’m also an off-roader, which requires periodic “soil sampling.” Though I can’t comment on them professionally, some of the new safety equipment has me quite fascinated, such as inflatable jackets, or these foams that you can put on that conform to your body shape. If you push on them slowly, they’ll deform, but hit them with a hammer or sharp instrument and they’re quite hard. I’ve gotten bruised, banged and beat up, so I’m exploring all the protection I can get. When I got married 13 years ago, my wife to be, Sheri, and I rode up to our wedding at South Coast Plaza on GoldWings. She was on a white one as a passenger driven by my friend and coworker, and I arrived on a black one. Then she and I rode into the sunset-or something like that—on my black Gold Wing. Sheri is also a motorcycle enthusiast. On the professional side, I’ve worked in the motorcycle division at Honda for 34 years. It’s been a good ride. by Jon Row Jon Row is the manager of Honda Motorcycle’s Press Division. For information visit: Motorcycle Industry Council in Irvine www.mic.org Motorcycle Safety Foundation www.msf-us.org

USE YOUR HEAD

t’s fairly obvious why wearing a helmet is a good idea when riding off on your iron horse. Helmets are a key element of your gear. They represent your last line of defense when all your skill, training and luck fail to keep you out of harm’s way. Crash helmets work by absorbing the impact generated by a fall, reducing the shock transmitted to the brain. In the process, they crush and crack, and are themselves destroyed in order to protect your precious cargo. A good helmet is like a good braking system: It’s job is to bring you to a gentle stop, rather than an abrupt one, and avoid having your brain slam against your skull, potentially causing severe injury. Motorcycle crash helmet design has been around more than 50 years. While design philosophies remain fairly constant, advances in materials as well as manufacturing techniques, have resulted in helmets that are lighter, more protective and comfortable. Picking the best one for you can be challenging. Over my 20 years of working with helmets and head safety, I find that there are a number of questions that often come up in the search for the right helmet. With some basic knowledge and research, you can choose the best one for you. SAYS WHO? A helmet’s primary duty is protection, so it stands to reason that how it will perform in a crash should be a top priority. All helmets sold in the United States for use while riding a motorcycle on public roadways and lands are required to meet the specifications of the U.S. Department of Transportation’s Federal Motor Vehicle Safety Standard 218 (DOT FMVSS218). These standards were put into effect in 1973, and are considered to be the most minimal requirements. The other major helmet standards in the US are published and monitored by the Snell Memorial Foundation, which is where I’ve worked these last 20 years. A non-profit organization, Snell has been testing protective headgear, and publishing helmet standards for more than five decades. We’re considered one of the world’s leading experts in this arena. We reevaluate, revise and republish our helmet standards roughly every five years, which we hope will encourage manufacturers to continually improve their products. Our most recent Snell ABILITY 53

standard for protective motorcyce headgear (M2005) was published in 2005.

want to be seen in it. A helmet that you leave on a hook in your garage, offers you no protection at all.

So what’s the difference between a helmet that meets DOT standards and one that meets ours? First off DOT’s testing requirements are less rigorous, particularly in the area of impact management. In short, Snell hits the helmet harder and insists that less energy impact the brain. DOT tends to operate on the honor system: A helmet manufacturer determines if a helmet meets DOT standards, and is supposed to be able to show that that helmet has been tested—if DOT ever asks them to. Snell, on the other hand, demands extensive certification, as well as follow-up testing, to ensure that helmets continue to meet standard requirements.

SHOP AROUND

FASHION FORWARD Helmets come in a range of styles, based on the type of rider who will use them, and the environments in which they’ll be used. There are full-face helmets, open-face helmets, off-road or dirt-bike helmets and flip-up or modular-style helmets. Many riders wear full-face or full-coverage helmets, because they offer facial protection through the addition of an integral chin guard. They are also generally equipped with face shields to protect them from small projectiles, such as rocks that get kicked up by other vehicles, dust, wind and rain. Some riders still opt for open-face styles. These come in open face three quarter helmet and half helmet coverage, as well as beanie style, but offer no facial protection. Snell certifies some open-face styles, but only DOT certifies half helmet coverage. For the increased air flow, openface helmets are sometimes preferred during hot weather. Most beanie-type helmets are not ‘street legal,’ as they do not even meet DOT requirements. Dirt-bike or off-road-style helmets are used for many types of off-road activities on bikes and All Terrain Vechiles (ATVs). These are generally equipped with a chin guard as are full-face helmets, but are made to be used with goggles and do not have integral face shields. Finally, there are the newest designs: the modular or flipup type helmet. This style is designed to give the rider the best of both worlds: the cooling of an open face style with the added protection of a full-face chin guard. At the moment, these styles comply with DOT standards only. A final note on style: It is very important that you like your helmet. While helmets are a safety device, they double as an article of clothing, and, for some, a real fashion statement. Buying a helmet in a particular style and color, with a graphic that you like, or one that matches your bike, will make it more likely that you’ll 54

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Start by trying on helmets. Most manufacturers try to accommodate a wide range of potential wearers with a variety of shapes, sizes and designs, which means they’ll fit each wearer differently. If at all possible, try a helmet on for a while. Fit is the one area where the consumer knows more about which helmet is best than anyone else, and this is crucial to both rider safety and satisfaction. If a helmet is too large, it may not be in place when needed. It will also slide around and rattle on your head. This is not only annoying, but potentially dangerous. A helmet that’s too small can hinder the rider’s vision, creating a distraction. How do you know what’s a good fit? The helmet should be snug. Not so snug that you start to feel your eyes bulging, but secure enough that once you have it on, it doesn’t slide around at all. A good test is to put the helmet on and feel for pressure points on your forehead, back of your head or on the sides. These ‘hot spots’ suggest the helmet is too small or the wrong shape. If the helmet fits snuggly and there are no hot spots, try to slide the helmet around on your head, side to side and front to back. If the helmet slides easily, it is likely too big or the wrong shape. Try again. Once you’ve found a good fit, buckle it up. Though the chin strap should be snug, it shouldn’t be difficult to open your mouth. You must properly adjust the strap every time, to insure the helmet will be there for you when you need it. Once you’ve found the right fit, color and style, then consider the price. Resist buying something that is a poor match for you, but a good match for your wallet. I’m frequently asked what is the difference between a $100 helmet and a $600 helmet, aside from the $500. Helmets are priced according to what the market demands. You will pay more for certain brands or styles, and there are distinct differences in how well a helmet is constructed, the paint and graphics quality, and even comfort. As far as safety is concerned, the helmet should always meet the standards it claims to uphold. Helmets in our program are vetted frequently through random testing. While there are tons of helmet choices available online, you should always try on the one you intend to buy. This is much harder to do online than at your local bike shop. If you do order a helmet from an online dealer, make sure they have a liberal return or

exchange policy should it not fit properly. Give the local shop a chance too. Sometimes they will meet the online price, while offering the instant gratification of buying stuff at a real store. YOUR NEXT HELMET Most manufacturers recommend that you replace your helmet every five years. Snell recommends that as well, but more important than using time as a guideline, go by the amount of use. Helmets do not degrade on the shelf, if they are stored carefully. So, occasionally riders can squeeze a few more years out of a helmet that has not been used as frequently. You will want to replace your helmet if the straps and D rings are sufficiently worn and tattered, or if they loosen up while you’re using the helmet. If the fit padding no longer keeps the helmet snug on your head, or if any goes missing, it’s a good time to buy a replacement. Ditto, if the padding or liner is loose and moves, or the helmet has taken any reasonable hard hits with a head inside. Helmets are essentially one-time-use items. After a crash, their protective capacity is diminished. They’ve done their job. On the other hand, some people say that if you drop a helmet you must automatically replace it. This is not generally the case. However, if the helmet flys off the back of your bike at 55 mph, and is knocked about a bit, common sense says buy a new one. Even if a helmet is well cared for, after a period of time, technological advances make them less protective than newer models, which may also be lighter and provide greater comfort. Always wear your helmet, every time. Some of the worst motorcycle crash stories I’ve heard start out, “They were just going up the street…” by Stephen Johnson Stephen Johnson is the general manager of the non-profit Snell Memorial Foundation in North Highlands, CA.

Leatt Corporation, based in Nevada, is the global distributor of the brace, which is a neck-protection system for all helmeted sports. I used to race Supersport (600cc track) and Off-Road (Enduro), where I took quite a few falls, mostly fracturing ribs, collar bones and suffering soft tissue injuries. It was the combination of being a doctor and a motorcycle racer, both important aspects of my life, that led me to believe that I could solve the age-old problem of neck injuries. Then one day, I was at an Enduro race meeting with my young son, Matthew, when a rider that I knew crashed, broke his neck and died. Matthew watched as I tried in vain to resuscitate the man, who left behind a wife and young children. It moved me deeply and I could not accept the notion that there was nothing that I could do to help other motorcyclists. Together with a number of experts, I studied the neck to determine how to protect it from catastrophic injury in the most efficient manner. We built prototypes and used a hybrid III crash-test dummy. We used Motorcycle Specific Crash Dummies for tests at BMW in Germany, and later relied on software to simulate crash events that were based on real-life accidents. We relied upon actual physical testing to calibrate our computer model. These concepts and test results were constantly evaluated and discussed with the world’s leading neck injury and biomechanical experts. Fit and comfort of the brace were finally perfected on the world’s top riders. We constantly seek to improve our product, while researching other gear that could make the sport safer.

PROTECT YOUR NECK

have worked in many disciplines including emergency medicine, trauma surgery and orthop edics. Four years ago I resigned from my post as a neurosurgical trainee to put all my efforts into creating the Leatt-Brace. It was a huge decision at the time.

by Chris Leatt, MD Chris Leatt, MD, is the CEO of the Leatt Corporation. He studied medicine at the University of Cape Town, South Africa, where he is currently based. He still actively participates in motorcycle racing. www.leattbrace.com

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Each year, UCP Wheels for Humanity travels globally, delivering tens of thousands of wheelchairs to such countries as Zimbabwe and Vietnam, aiding children who might otherwise remain immoble and dependent.

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ecently, on a dark and stormy afternoon in Quy Nhon, Vietnam, UCP Wheels for Humanity staff, volunteers and in-country partners custom-fitted wheelchairs for the last of a long line of children with disabilities. Many had been carried on their mothers’ or caregivers’ backs through a category 7 typhoon. Within hours, the children rolled away from the “seating” clinic and into a new phase of independence. “We held a total of five seating clinics in the Vietnam cities of DaNang, Hoi An, Hanoi, Ho Chi Minh and, of course, Quy Nhon, custom-fitting 275 wheelchairs, including standard, recliners, travel, active, paralympic sports, hand-crank, power chairs and specialized cerebral palsy positioning chairs,” said Ronald Cohen, PhD. who is CEO of UCP Wheels for Humanity, an affiliate of United Cerebral Palsy. Just a month before, half a world away, in the cities of Harare and Bulawayo, Zimbabwe, orphaned children with mild to severe disabilities received 300 new wheelchairs to help them get around, play together and make important strides in their lives. In 2007 alone, UCP Wheels’ delegations traveled to 17 countries and fitted over 4,100 wheelchairs on four continents. But there is still much work to be done to address the urgent global demand. Upwards of 100 million people worldwide need wheelchairs, but can’t afford them or don’t have access to them. Here in the United States, UCP Wheels for Humanity staff and volunteers put in six days a week, cleaning and refurbishing donated chairs to meet rigorous industry standards. All chairs must pass a quality control inspection before they are packed for shipment. “The impact that the UCP Wheels for Humanity mission has on so many children and adults with disabilities around the world never ceases to amaze me,” said Cohen. “I’ve been on these trips and have seen the transformation in children when they are sitting up straight, able to communicate at eye level, finally playing with their peers and now attending school. These children’s families would never have been able to afford a chair, and this one event changes the lives of not just the child, but the moms and dads, the brothers and sisters. It’s powerful,” Cohen added. The process begins when the international arm of United Cerebral Palsy of Los Angeles collects donated wheelchairs and other ambulatory aids from a number of sources, including individuals, local hospitals and clinics, treatment units and home medical equipment dealers. Donations allow UCP Wheels to provide additional ambulatory-aid and physical-therapy equipment, walkers, commodes, strollers and crutches. These items are ABILITY 57

shipped, along with the wheelchairs, to UCP Wheels’ in-country partners such as rehabilitation hospitals and clinics. The in-country partner ushers the wheelchairs and other equipment through customs, stores them until the UCP Wheels’ distribution team arrives to host the “seating” clinic. In-country partners also assist with the physical logistics, the media and the initial contact with those who are to receive the wheelchairs. When the equipment is ready to be distributed, UCP Wheels’ teams of medical professionals, including physical and occupational therapists and Certified Rehabilitation Technology Suppliers (CRTS) arrive in-country. Most pay their own way and volunteer their time. The distribution and medical teams set up distribution centers with the assistance of the in-country partner, and begin to fit recipients into their new wheelchairs. UCP Wheels is one of only a few organizations that uses the expertise of volunteer physical and occupational therapists, as well as CRTS to individually custom fit a wheelchair to each person’s size and specific disability. Achieving a proper fit requires great techinical skill, and can take more than two hours. These dedicated volunteers often work up to 12 hours a day, while also training in-country medical staff and therapists on correct seating, fitting, positioning and wheelchair adjustments and mechanics. 58

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UCP Wheels’ volunteer medical teams also provide education for parents and caretakers on proper exercises, methods of disassembling a wheelchair for transport and ways to get in and out of the chair, as well as up and down stairs. In addition, the UCP Wheels’ team leaves behind hand and power tools. With this combination of training and practical resources, incountry medical staff are empowered to perform repairs and adjustments on wheelchairs, especially those of growing children. Since incorporating in 1996, UCP Wheels for Humanity has delivered and custom fit more than 40,000 wheelchairs and thousands of pieces of physical and occupational therapy equipment in 68 countries. UCP Wheels for Humanity receives no government funding, and is financed solely by foundations and the generous contributions of individual donors. by Brian Miller With additional reporting by UCP Wheels for Humanity’s Ronald Cohen, chief executive officer and David Richard, president. Miller is the organization’s director of development. For more information visit: www.ucpwfh.org or call 818.255.0100

2. The employer will have a start and an ending date during which they will accept referrals. 3. The employer will interview a number of candidates for the job and select from that pool. 4. The employer will generally not see candidates after the interviewing window has closed. 5. After the order is closed, the job will be removed from the bank. Unfortunately, this system does not serve candidates who have serious or multiple employment barriers, such as disabilities. These candidates often find themselves not only competing with other candidates for the job, but also competing for referrals. If the interview process at this stage were simply a measurement of skills and abilities, then persons with disabilities would do as well as candidates who do not have disabilities. But experience shows that this is not the case. Hiring is a process of first impressions, and for many employers the first impression of someone with a disability is one filled with questions and concerns.

hen I first entered the field of training and placement, I believed that the most-qualified applicant would be hired. I had been taught that the optimum way to help persons with disabilities seek employment was to match their qualifications with the large data base of available job openings. On paper it made sense, in reality it didn’t work. The bigger problem is that the vast majority of persons with disabilities who are looking for work, depend almost exclusively on this imperfect system. Fortunately, there are alternative job-search methods that can be used by persons with disabilities, as well as by the training and placement professionals who work with them.

A TYPICAL DAY AT THE OLD JOB BANK Whether it is an employment agency that opens its doors in the morning, an internet service that posts to the World Wide Web, help wanted ads in the newspaper, or three-by-five index cards posted in a school’s placement office, the principle is the same: A company seeking to hire someone agrees to allow a “job bank” to refer candidates. This is the most common way that people look for jobs.

While these can be addressed and resolved over time, the problem with a competitive formal interview process is that there isn’t much time. Decisions are made on the fly, and deciding not to hire a candidate is often made within minutes of the first meeting. The first wave of candidates finds themselves in a screening process, not a selection process. Those who are hired are usually chosen during a second or third interview. Persons with disabilities are too often screened out in the first phase. The good news is that persons with disabilities have a resource that they may not have tapped: An alternative hiring system that is being used every day by successful applicants.

THE MODEL If you’re a person with a disability, the best way to look for work is to understand how employers recruit, as well as how they make hiring decisions. Long before employment agencies or websites know about an opening, an employer knows about it.

When an opening appears, here is what we generally know:

1. The easy way to fill the position is for the supervisor or manager to hire someone that he or she already knows. 2. The second approach is to ask other employees if they know someone whom they could refer or recommend. For many companies, this is the number one way to recruit new hires. 3. The third angle is to review persons who have already been interviewed by human resources or personnel.

1. The applicant must meet a minimum set of criteria and qualifications to be referred.

Consider that at this point, having moved through the first three ways that employers go about filling a position, a lot ABILITY 59

of people have been hired, yet not one job-order opening has been registered with any employment agency, website or job bank. The openings that go into the job bank are the ones that employers cannot fill on their own. It is estimated that less than 20 percent of the available openings are filled through job banks or newspaper ads. 4. The fourth approach is to refer to the job bank. 5. The fifth way is to place an ad in the newspaper.

THE HIDDEN JOB MARKET The Roaring 20’s was the heyday of American gangsters, with John Dillinger arguably the most famous. A reporter once asked him why he robbed banks. “It’s where the money is,” he told him. Why should you concentrate on the hidden job market? It’s where the jobs are. The hidden job market can be found in steps 1, 2 and 3 of the recruiting and hiring process. Between 70 percent and 80 percent of all hiring happens at these stages. The good news is that this arena is a friendlier one for persons with disabilities. It is friendlier because of the following factors: IT IS LESS COMPETITIVE OR NON-COMPETITIVE. The employer is looking to find someone who can do the job, so they do not have to interview a lot of people. The employer wants to know if the candidate can do the job and not so much how he or she compares to 10 others. IT IS LESS STRESSFUL. These interviews tend to be more focused on the applicant and the employer getting to know each other, rather than just going down a checklist of qualifications. This gives the employer a chance to focus on who the applicant is, rather than what the applicant has (disability). LESS RUSHED. Traditionally, competitive interviews with persons who have visible disabilities are 30 percent to 40 percent shorter than interviews with persons who do not have visible disabilities. If a person with a disability is entering the applicant pool at steps 1, 2 or 3, he or she can use this additional time to discuss any concerns or questions the employer may have about any accommodations needed to effectively do the job. IT KEEPS THE DOOR OPEN FOR OTHER POSITIONS. Even if you are not hired for the position, you are now known to the people who make hiring decisions. The chances of you coming to mind when something else opens up are greater than your chances of getting hired through the job-bank system in the first place.

WHAT SHOULD YOU DO First of all, do not stop using the job-bank system and the newspaper. People do get hired that way, and you should utilize all your job-search options. But to 60

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enhance your job prospects, you need to access the hidden job market. Here’s how: 1. If you have the drive to do it, call employers who hire for the positions you want. But do not talk to the people in human resources. Ask to talk to the supervisors who make the hiring decisions. Don’t be turned away with the “we do not have any openings” line. Instead, ask for an informational interview. It does not matter if there is an opening. 2. Okay, step one can be a bit intimidating. So how about this? Don’t talk to the supervisor; instead talk to someone at the company who does the kind of work that you want to do. Ask for an advice call. During the call ask questions about the field, get to know the person and have them get to know you. There may not be a job for you now, but there is one person there who will remember you when something opens up. 3. Recruit a mentor to help you look for work. Use one of the people from step two to recruit a mentor who can give you advice and support you in your job search. You may be surprised at the number of people who are willing to do this. A mentor can help you with the company that he or she works for, and at other companies as well. 4. Offer to do Job Shadowing (unpaid or subsidized time spent at the company to learn about the company or job). One of the biggest reasons companies are reluctant to hire persons with disabilities is not that the employers fear that an applicant cannot do the job, but that the applicant will not fit in. A few days of job shadowing allows a potential employer to get to know you, and can put any fear to rest. 5. Tell your rehabilitation professional or job developer that you want to access the hidden job market. Tell them you are willing to do informational interviews with employers who do not have a current, active opening. Tell them you are willing to do job sampling or job shadowing. Most of all tell, them you want to be an active part of your own job search, and that you would like to have some job-search related task to work on. This will not only help you, but it will also make the counselor or job developer work even harder on your behalf. Be willing to talk about your disability in a positive way to help employers voice and resolve any fears or concerns they may have about how you will perform the essential functions of the job. If you will need an accommodation, research it so that you can educate the employer about it. If you have trouble with this step, talk to a rehabilitation professional or use the Job Accommodation Network (JAN) to assist you. 6. Last but not least, take charge of your job search. There are some great organizations and professionals continued on page 64

JOINING FORCES

he Respect-ABILITY Statewide Disability Conference was first held in 2003, when three groups met in an effort to unify the disparate organizations in California’s disability community. They included what is now known as the Disability Rights Legal Center, (DRLC), Protection and Advocacy (PAI) and the California State Independent Living Council (SILC).

The initial conference focused on identifying and articulating common goals. Before that, there was a tendency for disability advocates to work individually, sometimes covering the same territory and generally failing to achieve a sense of common purpose or action, according to Eve Hill, former director of DRLC. She helped organize the first conference, which brought together nearly 400 disability advocates, including local, state and national leaders. They identified and developed 10 long-range goals of the California disability community, which would become known as the California Disability Rights Agenda. In 2005, a second Respect-ABILITY Conference was held in Sacramento, featuring local, state and national leaders in media and policy development, including journalist John Hockenberry. That event coincided with Disability Capitol Action Day, which included a march and rally, where advocates met with legislators and policymakers at the state capitol, sharing information that helped them collectively take a stand against any budget proposals, legislation or regulations that would negatively impact people with disabilities. Hundreds of disability advocates are scheduled to come together March 7-8, 2008 in Los Angeles for the third conference. Attendees will discuss strategies for effective advocacy. The principle aim of this year’s Respect-ABILITY Conference is, again, to facilitate an exchange of knowledge between people with disabilities and to foster understanding and cooperation. The event is expected to draw upwards of 500 participants. A number of renowned leaders in the area of civil rights advocacy are scheduled to speak, and attendees can choose from dozens of workshops on health care, housing, employment, communication, leadership and community organizing. For more information visit: Respect-ABILITY Coalition’s website: www.respectabilitycoalition.org

California Council of the Blind www.ccbnet.org

Disability Rights Legal Center www.disabilityrightslegalcenter.org

Californian Democratic Party Disabilities Caucus www.cadem.org

Protection and Advocacy, Inc www.pai-ca.org

California Network of Mental Health Clients www.californiaclients.org

State of California Independent Living Council www.calsilc.org

Asian Rehabilitation Services www.asianrehab.org

Californians for Disability Rights www.disabilityrights-cdr.org

National Association of Disabled Law Students www.nalswd.org

California Foundation for Independent Living Centers www.cfilc.org

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

by John Longoria and Paula Pearlman ABILITY 61

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ACROSS 1. Champion of people who are blind (2 words) 6. Buddy 8. This, in Paris 9. Boldly goes forward (3 words) 11. North western state 12. Temperature control 13. Russell Crowe’s middle name 14. Stallone’s nickname 16. He played the jockey of Sea Biscuit who was blind in one eye, __ Mcguire 19. Envelope that comes back, abbr. 21. Alien biologist that was persecuted on earth 22. Film starring Julia Roberts whose character discovers she has diabetes and should not have kids just before she is getting married (2 words) 27. Sun god 29. Movie in which Peter Sellers plays a man with a mechanical arm (2 words) 33. Anti-oxidant, abbr. 34. Tom Hanks’ character who overcomes all adversity (first name) 37. Classic starring Dustin Hoffman and Tom Cruise (2 words) 39. User’s guide, for short 41. Epochs 42. Solitary 44. 2006 romance about a blind man who falls in love with an Indian woman (goes with 50 across) 46. Coat 47. Drink with jam and bread 48. Russell Crowe had a beautiful one! 49. Originate from 50. See 44 across

DOWN 1. His hand shook but his heart did not, when he signed the Declaration of Independence (Rhode Island rep, Stephen ____) 2. Actress from Just Shoot Me who has strongly supported charities to help people with disabilities- first name 3. Microwave 4. Flightless bird 5. Fortune 6. Inner tranquillity 7. Sometimes white, sometimes transparent 8. Sideways beach walker 10. Salary 14. A favorite uncle 15. Find out something new 17. Night singer 18. Agreement indicator 19. Disparaging remark 20. Fashionable 23. Asphalt 24. Jokes 25. Lubricate 26. The Pres. who abolished slavery 28. Gritty detective who always got his man, played by Ramond Burr 29. Overcomes 30. Christmas spoiler 31. Promotions 32. Grape producer 33. Car club 35. The original woman? 36. Tire part 38. “Sex and the City” character (2 words) 40. Happy 43. Many 45. __ King Cole 47. Head __ head 48. St Paul’s state ABILITY 63

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that help persons with disabilities find jobs. But the key word in that sentence is “help.” Don’t sit at home, passively waiting for someone else to find you a job. Organizations can only help you find an opportunity to sell yourself and get hired. The rest is up to you. The more you do to access the hidden job market, the more successful you will be. Don’t be one of the 80 percent of job seekers who are only competing for 20 percent of the jobs. Be the one who competes for them all. Make John Dillinger proud. by Richard Pimentel For more information on the Job Accomodation Network, go to: www.jan.wvu.edu or call 800-526-7234 (V); 877-781-9403 (TTY) Also visit: www.abilityjobs.com

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For more information on Pimentel, go to: www.miltwright.com

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 What Managers and Supervisors need to Know about the ADA The Workers Compensation ADA Connection Windmills Trainers program—Hiring and Working with People with Disabilities

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