THE VOICE OF OVER 50 MILLION AMERICANS
$4.99 Volume 2010 REGINA HALL APRIL/MAY MAGAZINE
M ANAGING E DITOR Gillian Friedman, MD
M ANAGING H EALTH E DITOR E. Thomas Chappell, MD
C ONTRIBUTING S ENATOR U.S. Sen. Tom Harkin (D-IA)
H UMOR W RITERS
Jeff Charlebois George Covington, JD Gene Feldman, JD
HARKIN — The Benefits of Health Care
ASHLEY’S COLUMN — From Italy, With Love
H EALTH E DITORS
HUMOR — Time’s A-Wastin’
NBC DIVERSITY SHOWCASE — The Peacock’s True Colors
CHRIS WADDELL — Pretty Tough Guy
BEYOND THE CHAIR — Hangin’ with Drew’s Crew
ABILITY HOUSE — New Place Like Home
WINTER PARALYMPICS — A Snowy Sports Report
CHILDREN’S MENTAL HEALTH — The Doctors are In
AMY ROLOFF — Cruising for a Cause
Scott Johnson Guy Uesugi
SARAH REINERTSEN —Excerpt from In a Single Bound
REGINA HALL — Acting, Altruism and a Death at a Funeral
ABILITY AWARDS — We Like You, We Really Like You
ANDREA FRIEDMAN — Sarah Palin and the Family Guy Feud
EEOC BAD BOYS — Schooling the Employers
EVENTS AND CONFERENCES
Larry Goldstein, MD Natalia Ryndin, MD
Paralympic Games Beijing
Regina Hall p. 44
C ONTRIBUTING W RITERS
Gale Kamen, PhD Laurance Johnston, PhD Andrea Kardonsky Deborah Max Myles Mellor - Crossword Puzzle Dana Nelson Paula Pearlman, JD Richard Pimentel Allen Rucker Kristen McCarthy Thomas Betsy Valnes Andrea Friedman p. 52
W EB E DITOR
G RAPHIC A RT / I LLUSTRATION
Amy Roloff p. 32
Nancy Villere— CrushPhotoStudios.com Makeup: Autumn Moultrie Hair: Redell Scafe
T RANSCRIPTIONIST Sandy Grabowski ABILITY’s Crossword Puzzle
2010 Winter Paralympic Games p. 24
Liz Angeles Diane Chappell Dahvi Fischer Renne Gardner Sonnie Gutierrez Josh Pate David Radcliff Denise Riccobon, RN Jane Wollman Rusoff Maya Sabatello, PhD, JD Romney Snyder
DIRECTOR OF BUSINESS AFFAIRS John Noble, JD
MARKETING/PROMOTIONS Liz Angeles Andrew Spielberg Beyond the Chair p. 18
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NON-PROFITS Ashley Fiolek p. 8
ABILITY Awareness/Fuller Center Habitat for Humanity
Chet Cooper 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 2010 Regina Hall April/May Printed in U.S.A.
The views expressed in this issue may not be those of ABILITY Magazine Library of Congress Washington D.C. ISSN 1062-5321 © Copyright 2010 ABILITY Magazine
The ABILITY Build program outreaches to volunteers with disabilities to help build accessible homes for low income families. We are currently seeking corporations, organizations and churches to sponsor more homes. This award-winning program builds homes and awareness, changing the lives of everyone involved. abilitybuild.org email@example.com abilityawareness.org
Olmstead by ensuring that individuals with significant disabilities have access to home and community-based services and supports. The CLASS Act is a voluntary insurance program that provides an affordable way for middle-class families to plan for the possibility of future disability or chronic illness. The program provides participants who have a significant impairment a cash benefit to pay for home assistance, transportation, or other essential services that allow individuals to live in the community rather than in a more restrictive setting. The Community First Choice (CFC) option, based on the Community Choice Act, is a new Medicaid program that will provide home and community-based services to individuals with disabilities—services that are critical in allowing people to remain in their homes and communities and to lead independent lives.
THE HEALTH REFORM LAW: MAJOR PROGRESS FOR INDIVIDUALS WITH DISABILITIES Dear ABILITY readers, The new health reform law, signed by President Obama last month, includes provisions that offer important new protections and choices for individuals with disabilities. These provisions—for which I fought very hard— include, for example, prohibitions on denying insurance coverage based on pre-existing conditions, increased access to home and community-based services, and new standards for accessible medical equipment. Denial of insurance coverage based on a pre-existing condition has long been a major problem for many individuals with disabilities and their families. That’s why the Patient Protection and Affordable Care Act, when fully implemented, will expressly prohibit insurers from denying individuals health insurance coverage due to a pre-existing condition. It will also prohibit charging individuals with pre-existing conditions higher premiums or excluding them from coverage for specific conditions. In addition, health insurers will be prohibited from excluding children from coverage based on preexisting conditions. The new law also creates alternatives to long-term care programs that will give individuals with disabilities greater opportunities to remain in their homes and communities. These two new programs, the CLASS Act and the Community First Choice Option, help fulfill the promise of the Supreme Court’s decision in 6
Ten years ago, in the Olmstead decision, the Supreme Court held that the Americans with Disabilities Act (ADA) gives individuals with disabilities the right to live in the least restrictive environments and to make their own choices to receive their care in a community rather than in an institutional setting. Under current law, Medicaid is required to pay for nursing home care for an individual with a disability who is financially eligible and who has an “institutional level of need.” However, a state has no similar obligation to pay for the same person to receive care at home. This renders the promise of the Olmstead decision hollow for the residents of many states. The CFC option will, for the first time, require states that choose to participate to provide all eligible individuals with personal care services, rather than serving only a small proportion of the eligible population while maintaining long and slow-moving waiting lists. CFC is an option within the Medicaid program, and each state will need to make a decision whether or not to opt in. However, states that commit to the CFC option will receive enhanced federal matching funds. This is a very significant investment at the federal level to providing individuals with significant disabilities the choice of remaining in their communities. The CFC option requires states that choose the option pay for personal care services to help with activities of daily living—such as dressing, bathing, grooming and eating; and help with activities such as shopping, chores, meal preparation, and finances. Readers of ABILITY know very well that this assistance can make a
crucial difference in allowing individuals to live independently in a community. The Act also includes an extension through 2016 of the current Money Follows the Person program, another one of my legislative initiatives, which supports individuals with disabilities who want to move out of institutional settings and back into their own communities. The program provides enhanced financial support and systems change to allow these individuals to do so, with the Medicaid funds “following” the individuals back into the community, to pay for their necessary services and supports. Finally, the new law—borrowing from my Promoting Wellness for Individuals with Disabilities bill—includes important provisions regarding accessible examination and diagnostic equipment. A major ongoing barrier for patients with disabilities is the lack of accessible examination tables, weight scales, and mammography machines or other diagnostic equipment for people with mobility or balance issues. Under the new law, the Access Board will help develop standards as to what constitutes accessible medical equipment for patients with disabilities. These new initiatives represent significant progress in our health care and long-term care systems for people with disabilities. They encourage and enable independence, which is what all people with disabilities want. You can be sure that, as chair of the Senate’s health committee, I will continue to make it a priority to ensure that we fulfill the great goals of the Americans with Disabilities Act: equal opportunity, full participation, independent living, and economic self sufficiency for all Americans with disabilities. We will not give up! Sincerely,
Senator Tom Harkin www.harkin.senate.gov Senator Tom Harkin (D-IA) is Chairman of the Senate Health, Education, Labor and Pensions Committee.
ince there are no races going on in the United States right now, some of my sponsors have had me out doing other fun things in while I wait for my training period to end and for my season to start. Last weekend my mom and I went to a NASCAR race in Bristol, Tennessee, where we got to meet and hang out with the Red Bull race team. I wasn’t sure what to expect but I had a fantastic time! Some of the Red Bull gang that I know from California flew out, too, and met up with me and my mom in North Carolina before we all drove over to Bristol. Once in Bristol, we met up with Kyle from Red Bull. Kyle works the race circuit and really hooked me up! I got to meet Brian Vickers and Scott Speed from the race team, I got to sit in both of their cars when they were out on the starting grid, and I also got to sit in the pit box. The morning before the races, my mom and I even got to take a ride in the pace car. I sat in front and my mom was in back. It was a blast, but my mom was hanging on for dear life and had her eyes closed most of the time! It is nice to have sponsors who are involved in other things besides motocross because it means I get the chance to have different “sporting” experiences. I hope I get to have some of these experiences again! Today I am writing you from Italy, where I was sent to participate in Red Bull Moto Chix. Ten amateur female riders from Italy were picked to participate in this show. My job, along with Stefy Bau (a retired professional motocross rider and FIM coordinator), was to work with the girls for a couple of days and get them ready for their big race. The prize awarded at the end of the race was a trip to the US for this year’s MxOn Des Nations in Lakewood, Colorado. It took us four hours to get from the airport to the location where filming and racing would take place. Once we got
there, we stayed in a big castle-like hotel that had a beautiful view and great food! I also got to ride on the track that the girls would race on for practice. It was a different kind of track than what I usually drive in the US. This track was longer and had more large hills than I’m used to! The whole experience of working with the girls was a lot of fun, and I am glad I got to meet and hang out with them. One time, when I was sitting on my bike, all of the girls gathered around me and Stefy. As Stefy gave them some riding instructions, the girls all started looking around and looking at each other. I didn’t know what was going on, so I looked over at my dad to see what was happening. He signed to me that everyone could hear some kind of “beeping” noise, and that everyone was trying to figure out what it was. Suddenly, the girls started moving closer and closer to me. Then one of the girls pointed down to my cardio watch! I was like, “Oops, my bad! That means it is 6:00 in America.” I guess when you are deaf you don’t really need a beeping alarm to go off! Now I am back in Northern Italy, close to Milan, and will hang out here for a few days before my dad and I head over to Bulgaria for the first round of the FIM Women’s World Championship. I can’t wait! It’ll be fun to see all of the girls and race with them again. And I hope to see you at an outdoor USA national this year!
Ashley with Brian Vickers and Scott Speed ashleyfiolek.com
here’s some talk around town. Some very scary chatter. People say it is coming and will be here before we know it. I don’t want to alarm you but…the end of the world is just around the corner. I know. Isn’t it exciting? The good thing is, we have an exact date: Dec 21, 2012. That’s according to the Mayans, who supposedly kept the most accurate calendar in the history of man. (Yes, even more accurate than the Quartzmen or the Timex tribe of Bolo.) According to the Mayans, the Earth will enter the region of space equilateral to the plane of the Milky Way Galaxy. Nobody knows what calamity will happen when we plunge into this highly energized plane. We could blow up. Or we might not be able to pick up AM radio stations. I say, prepare for the worst. At least we have fair warning about when we should stock up on bread, toilet paper and Skittles. I’m going to get the essentials in 2011 just to beat the crowd.
Since the beginning of time, people have always been claiming the world is going to end. Over the years, I have certainly heard a slew (or is it gaggle?) of preachers spreading the dire warning. They say things like, we have angered God, and according to the scriptures, we’ll all be dead by next Tuesday. Of course, the only way to prevent the impending doom is to give them money. Then, after next Tuesday rolls around and we’ve only received a smattering of light showers, the preacher assures us that we pleased God with the money-giving. We become elated, only to find out from the preacher a few months later that God is on a tear and looking to end the world again. Damn, where’s my checkbook? I’ve been through a rainstorm, black out, riot, hurricane and countless bad movies, but having never experienced the end of world, I haven’t a clue what to do. Should I pack? Turn down the thermostat? Cut the yard? Oh, and what do I wear? I don’t know what’s “in” in heaven. Oh my God, who would I get to feed my cats, Olaf and
Pepper? I guess I’ll just leave an extra full bowl of Frisky Bits so they don’t eat each other. (There’s nothing more disgusting than cat-nibalism.) Hopefully they understand the art of rationing. I really wish I knew if this ‘end of the world’ thing is for real. I don’t know if my heart can handle another Y2K-type of let down. Was that a great excuse to party or what? Folks were celebrating all around the world in hopes of a major computer meltdown that would surely bring a week off of work. The news hyped it for a good year and…it never happened. That stuff makes me very leery of forecasts. I still have troubling memories of growing up back east, where the TV weatherman would tout an upcoming “Blizzard of the Century,” then, come the next morning…nothing. Not even a flurry. School was still on and I was pissed. No, I didn’t do my homework. I trusted… a stinking weatherman. Don’t act so surprised. You knew this day had to come. Nostradamus threw out a couple warning quadrant calls. He supposedly had a pretty good prediction batting average, certainly better than Miss Cleo. Also, let’s not forget biblical prophecies. Can you say Revelations? Puts a little shiver in your boots, doesn’t it? We’re talking horsemen, plagues, earthquakes and famines, oh my! Can you say Armageddon? Only God knows what’s coming down the pike…and not because He has a Magic Eight ball, but because He’s God. (Of course, the bible also says, no one knows the hour and day when these apocalyptic things will come to pass…So hear that, Mayans? Don’t be a lyin’.) Anyway, I want to say goodbye to some people I have known, but I’m afraid. Who wants to look like the fool if nothing goes down? I guess I’ll be vague with those people and say something like, “Hey, if I don’t see you by next Friday, know that I love you and I’m still planning on returning your leaf blower.” The end of the world would also be a great excuse to patch things up with people you’ve had a falling out with. “I just want you to know, I didn’t sleep with your wife on purpose. I forgive you for being angry with me.” I really hope I’m around the day before the end of the world. Can you imagine how many people are going to be telling off their bosses? “You filthy pig, I quit. I’m tired of working my fingers to the bone for chump change and for that lame $20 gift card bonus to Pete’s Pet Grooming.” I know I’ll take advantage of those last days. I just wonder how many women will slap me. “Come on, SugarNose, nobody’s going to say you’re easy. They’ll all be dead tomorrow and so will you. Whatta ya say? One for the road…” I wonder how it will all go down. Will the earth fall out of alignment and cause a destructive magnetic shift? I guess we’ll know if our refrigerator magnets suddenly fly off. Maybe we’ll be crushed by a gigantic asteroid. You’re sunbathing in the backyard and a big rock lands
in your pool. It’s not pretty. Or, who knows, it could be a mammoth tidal wave. You’re looking out the kitchen window, and suddenly you see a wall of water rushing at you. The only two words you can mutter are, “What the—?” And let’s not forget the old stand-by of a nuclear war. I don’t trust the Chinese or the Iranians (but then again, I don’t trust anyone—I hide my valuables when my mom stops by for a visit). I’ve always enjoyed a good fireworks show, so maybe a nuclear war might be kind of neat, except for the whole blisters-onthe-skin thing. (Keep calamine lotion in the medicine cabinet, just in case.) Look, whatever it is, I say enjoy the ride. I just hope that whatever happens, I’ll be in bed. I always feel safe in my bed—I can always hide under the covers. Call me a maverick, but the end of the world doesn’t seem so bad. No more waiting in traffic. No telemarketers calling. No minute-by-minute updates on the healthcare debacle. No more cringing when you look through your daily mail stack. Could you imagine a billfree afterlife? Wow, I’d be in heaven. (I hope). Most importantly, I’ll bet there’s something good on TV in the here-after. Nobody could handle an eternity of the trash we have here on earth. I’m not sure when the world is going to end, but I think there will be some signs. Things like: Brett Favre retires for good. Sitcoms are funny again. Donald Trump’s hair finally moves. The Jews and Palestinians gang up on the Swedes. Katie Couric is admitted on Celebrity Rehab. Michael Moore is diagnosed with anorexia. Keanu Reeves gets an Oscar. Not knowing when the end will come might even cause people to be good for a change. That’s why old people behave. You rarely see grandma car jacking or grandpa watching porno flicks. They want to get through those pearly gates, and time is limited to make an impression on the judge. I’m actually looking forward to the End Times. Do you know how many women have told me they would only date me if the world were going to end? Well, I guess I’ll make some calls and set some dinner reservations. If only hell would freeze over, my dating schedule would be booked solid! Maybe it is time to start fresh. Clean the slate. In all honesty, I think the human race needs a “do-over” anyway. We’ve made way too many mistakes. Wars, pollution, crystal meth, the Macarena, New Kids on the Block, Paris Hilton movies, that Kate and John thing…oh, and the Flowbee (that was the vacuum cleaner that cut your hair for $9.95.) So, get ready. Like Jim Morrison once slurred 40 years ago, “This is the end, my only friend. The end.” “Ham on a Roll”
by Jeff Charlebois
jeffcharlebois.com ABILITY 11
The cast of NBC’s third annual Diversity Showcase takes a collective bow before an audience at West Hollywood’s Renberg Theater.
riter and actor Jim Troesh will be the first to tell you he’s the best-connected quadriplegic working in Hollywood today. Then he’ll remind you he might just be the only one. But thanks to industry events like the NBC Diversity Showcase, an increase in representation and opportunity seems a slightly more attainable reality for entertainers accustomed to being overlooked by the Hollywood scene.
“I know quadriplegic is a really scary word,” said Troesh, whose acting resume includes appearances on After MASH and Boston Legal and a recurring role on Highway to Heaven. “But I’d really like Jim Troesh to make enough money to take care of Jim Troesh. I want my work to connect with some people, to make a few statements, to show that yes, I have a life. That way people can really try to get to know me before they get to know me.” Troesh’s comedic piece, “The Gimp and the GILF,” about a wheelchair user and a unique sexual fetish, was one of nine short scenes selected for this year’s showcase. The event, organized as part of NBC-Universal’s Diversity Initiative, is one element of the network’s ongoing effort to discover and promote unique perspectives in entertainment. This year, says event co-producer and NBC diversity executive, Karen Horne, there was a concerted effort to include more seniors and people with disabilities among the showcase talent. “Diversity means really trying to tell a story through a new mindset, a fresh perspective,” Horne said. “It takes 12
just one success, one risk, to start opening people’s eyes and to show them that inclusion is something that can and should be done. It’s not such a big chance if someone does it and does it well.” Utilizing the resources of the Writers Guild of America Access Department, the Media Access Office, and the NBC Directing Fellowship Program, Horne and co-producer Kendra Carter assembled a slate of acting, directing and writing talent of greater diversity than is found on most TiVos. Stories presented included those of a young Chinese woman and her questions of cultural assimilation, elderly women commiserating after a funeral, and a pair of lesbian friends who wrestle with the unique complexity of their relationship. For Reem Mahmood, who played a young woman growing closer to her mother in “Love, Lee,” diversity showcases like these offer hope that the entertainment industry is catching up to the multicultural reality in which we all live. “There’s finally coming a point in Hollywood,” Mahmood said, “at which studio and network heads might realize what’s so attractive and exciting about a melting pot. Who says there isn’t a Meryl Streep in another race or with a disability? Bring these people out. Place them in roles that aren’t traditional. That’s how you really discover talent.” But in the meantime, few of these performers are content to sit quietly. Both Mahmood and Troesh say that the general scarcity of true inclusion and diversity on television has compelled them to channel their voices
Actors Ali Stroker and Izzy Diaz perform in "I Promise I Won't Get Mad"
Actors Amentha Dymally and Richard Redlin
Actors Ali Stroker and Izzy Diaz
Actors Robert Owens-Greygrass and Coley Mustafa Speaks perform in "Ten"
(l to r) Showcase scene directors Eli Akira Kaufman, Jasmine Kosovic, Dempsy Tillman and Showcase co-producer Karen Horne
and experiences into creative material of their own. Mahmood has written “Arab America,” a television pilot about a girl of Iraqi heritage growing up in California. Troesh writes, produces and stars in a series of web videos called “The Hollywood Quad,” in which he takes a comical look at his professional, sexual and social exploits. The liberating process of creative engagement, Troesh says, has frequently shed new light on his disability and self-perception. “I’ve always felt like kind of an outsider, even at Hollywood parties,” Troesh said. “So I tend to write scripts about being on the outside looking in. And the more that I write, the more I realize that everyone can relate to that feeling. So I just keep writing.” But according to television writer-producer, Felicia Henderson, it’s just that kind of specificity, that relatable yet unique exploration of personal challenges, that is too often lost in an overarching effort toward multicultural representation in media. “You still don’t see a lot of television that’s told from a specific point of view,” said Henderson, who acted as creative consultant for the showcase and has worked on such series as Fringe and Gossip Girl. “The focus lately is, ‘How do we include all kinds of people in a mainstream setting?’ But what about really exploring a specific ethnic background or a specific disability? It seems more important now to just put someone in a wheelchair on a mainstream show rather than to show the rich and interesting parts of his life in the wheelchair.”
showcase selection “Getting Even” centered on a hearing impaired legal professional, believes that a primary reason such rich and interesting stories often go unheard is because too many talents of minority backgrounds don’t feel comfortable sharing their wares in the marketplace. “People wonder why there aren’t more minority writers,” Chitlik said. “It’s because there aren’t more minority opportunities. Because many of these talents aren’t applying to film schools or theater programs. Because they don’t see that they have roles in front of or behind the camera. They don’t know if there is actually a place for them.” Whatever the obstacles that minority talents might face, Horne and Carter remain optimistic that the ever-shifting landscape of television is making a place for anyone with talent, drive and voice. Carter says that through programs like Writers on the Verge, the Short Cuts Film Festival, the NBC Director Fellowship, and the Diversity Showcase, the network is leading the charge to help television, and television viewers, celebrate difference as part of our societal fabric. “The talent is out there,” Carter said. “We’re always looking for it, and we’re excited whenever we find it.” by David Radcliff nbcunicareers.com/earlycareerprograms hollywoodquad.com
Paul Chitlik, a television writer and producer whose ABILITY 13
WADDELL ADDS “HALL OF FAME” TO RESUME OF ACCOMPLISHMENTS
n conversation with Paralympic athlete Chris Waddell, you rarely get a true sense of his clout and achievements. He’s humble. He’s methodical with his words. He speaks of the things he’s still trying to do—like change attitudes about disability—more than he speaks of the things he has done. But all that he has done makes up a pretty long list.
Sure, all the accolades and adventures must be nice. But ask Waddell and he’ll tell you that his awards and accomplishments only provide him a better platform for the social change he seeks in perception of people with disabilities. A change he’s working towards every day.
After all, Waddell remains one of the most accomplished US Paralympic athletes in the history of the Games. The celebrated alpine skier not only competed in the 1992, 1994, 1998 and 2002 Paralympic Games, he also swept the gold medals in the 1994 Lillehammer Games, winning all four alpine skiing events (Downhill, Giant Slalom, Slalom and Super-G) and securing his name in the history books with authority. Add to those achievements a gold medal in the 1998 Downhill, along with five silver and two bronze medals, and Waddell’s total count for winter medals stands at a daunting 12.
Josh Pate: What does it mean for you to be called a “Hall of Famer”?
Though it’s rare that any athlete compete in both the Winter and Summer Games, Waddell has done that, too, winning silver in the 200-meter push-rim wheelchair event at the 2000 Sydney Paralympics. He’s also a former model, and was named one of People Magazine’s 50 Most Beautiful People in 1998.
JP: So you’re comfortable having others look up to you? You’ll play that role?
But to Waddell, all of that is in the past. Lately he busies himself by donating wheelchairs and handcycles in Africa through his foundation, One Revolution, raising social awareness of people with disabilities, and becoming the first American athlete to be inducted into the 14
Paralympic Hall of Fame. And just this past September, Waddell mastered Mount Kilimanjaro, becoming the first person with paraplegia to the reach the summit, after a climb of 19,334 feet.
Chris Waddell: It’s pretty funny. Being a Hall of Famer is not something I think about myself. It’s something that I look at other people achieve and I think, ‘Wow, that’s really cool.’ Because you look at the people you look up to, rather than looking at yourself as someone others look up to. But I hope that from where I am now, I might be able to do for someone else a little bit of what those I looked up to did for me when I was a kid.
CW: I’ve become more comfortable as time has gone on. But it’s an interesting role, and there are definitely responsibilities that come along with it. Since my accident, I now represent a lot more than just myself. That’s been a role that I’ve come into, and so I try to live as well as I can. I hope I can live up to that responsibility while still fully knowing that no one is perfect. I see a lot of my own blemishes, so I don’t want to live in a role where I’m telling people that I’m perfect, that you
Chris Waddell—Paralympic Hall of Famer
should do what I do. But you should try learning from your mistakes the way I have. JP: When you think back on the ski accident in 1988 that left you paralyzed, do you believe that experience changed your life in a positive way? CW: Definitely. A lot of people look at me like I’m crazy when I say that a lot of good stuff has come out of the accident, but the thing is, I wouldn’t trade my life now for what my life would have been. The accident, and everything that has happened since, has shaped who I am. I’m pretty happy with who I am as a person, but I also think that there’s a distinct possibility that I might have done more with my life the way I am now than I would have done before. Because of that accident, I might have developed a greater reach and I might have made a greater impact. That’s a pretty cool realization, and I certainly don’t want to ever discount that by saying I’d rather things would have worked out differently. JP: What was your skiing like before the accident? CW: I skied competitively. I started ski racing when I was six years old, and I raced in Division 1 in college. I was legit, but I was also good enough to know that I wasn’t great.
it. Talk about a disconnect. So I really had to go and learn a lot of things I might not have had to learn otherwise. I started skiing again three days short of the first anniversary of my accident. That progression was an interesting situation because it took me a good while before I even felt like I could balance and get down the hill. Then it really took me a few years before I felt like I was back in control of skiing. I had my accident in December of ’88, so it took me from ’89-’90 until ’92’93 to really feel like I was proficient. JP: When you began to learn adaptive skiing, was it your goal from the outset to be competitive, or did that come later? CW: Oh, it was to be competitive from the start. I was a ski racer and I felt like I had never realized my potential as a ski racer. So once I started to relearn, it was sort of a seamless continuation, as funny as that might sound. I thought, ‘This is what I want to do, and this sport is going to teach me who I am.’ I guess I started off with that idea and goal in mind, and it really taught me a bit more than I’d anticipated. Even after my accident, skiing is still the same sport and still the same pursuit for me that it has always been. So I was going to be competitive all the way along, and I was actively looking for that chance—looking to make myself into a great ski racer. Luckily, I was successful, at least in some people’s eyes.
JP: What was it like making your progression into adaptive skiing and learning a whole new approach to getting down the mountain?
JP: What do you mean when you say that the sport taught you who you are?
CW: Learning a different approach is exactly right. Essentially my mind knew what I was supposed to do, but my body had absolutely no ability whatsoever to do
CW: With a sport like skiing, there is just so much that goes into being successful. You have to conquer your own fears and worries and insecurities. That process ABILITY 15
Chris Waddell and helpers carrying wood planks to navigate the tough terrain
taught me a lot about myself because, in order to be successful, I really had to find a way to master myself. To achieve the success I did, I had to overcome my particular deficiencies. The funny part is, that process is no different whether you’re able-bodied or have a disability. JP: Very few athletes compete in both the Summer and Winter Games, but you were able to do that. Why did you decided to pursue the Summer Games after having so much success in alpine skiing? CW: Part of why being inducted into the Hall of Fame is really meaningful to me is because one of my heroes when I first started skiing was a guy named Jim Martinson. I met him as a ski racer when I went into his shop where he builds wheelchairs. I wanted to get a racing wheelchair built for myself, and Jim had won the Boston Marathon. He also had won the Peachtree Road Race. He had won all of these big races and was a guy who I really looked up to. That was a really big deal. He was a big part of the reason I ended up going into two sports, simply because I had seen that he had done it. I had seen how successful he was and he became my version of what it meant to be a successful athlete. JP: Every role model has his own role model. CW: Oh, most definitely. Jim is still my role model 16
today. The guy is 63 years old or something and still going fast. It’s all a matter of how people approach their lives. I look at Jim and I say to myself, “Wow, I’d love to be like him. I want to bring that sort of passion and enthusiasm into what I do and achieve the same fun while being super-competitive at the same time.” I’m still trying to follow in his footsteps. JP: Now let’s tackle the big topic: Mount Kilimanjaro. It’s obviously a huge accomplishment for anybody to climb that summit. Why did you want to do it? CW: I felt like Kilimanjaro was an extension of what I had always tried to do as an athlete. As an athlete with a disability, I felt I was there to represent possibility and really to take people’s imagination and try to stretch it a little. It’s so easy for people to look at somebody in a wheelchair and say that you can’t do this or you can’t do that. So I wanted to surprise them. And I felt like in achieving that, I would be able to make a real statement about people with disabilities. I’d force the general public to revisit what they think they know. As an athlete, I didn’t feel that my reach was as great as I wanted it to be. Paralympic athletes weren’t on television, or we weren’t on television enough. So people didn’t get a chance to see what I saw when I was out with these guys, and I wanted to share some of that experience. Kilimanjaro was an opportunity to create a bigger platform
and a greater reach, and climbing the mountain was something that was really difficult, something people wouldn’t assume I could do. So my hope is that I was able to represent people in a positive way and shift that paradigm a little. That was the attraction of Kilimanjaro. JP: Talk about the preparation that went into your climb. It’s not something one decides on a whim, right? CW: It took a long time, about two years, to get ready to do it. We took a scouting trip in June 2008 because we didn’t know what we were up against. It’s easy to get on the computer and get some images of the mountain, but the images don’t really tell the whole story. So we had to get out there and figure it out. JP: Did doing your homework help? CW: Yeah. I had thought I’d have a pretty good shot at being able to do it, and that I could just muscle through that first time. It was harder than anything I had imagined. I had thought, “Oh, it’s going to get harder when we get to the top and it gets steep and the air gets thin because of the altitude.” But it was difficult from the moment we started, and it became way more difficult than I had thought it would be. JP: Tell us about the equipment that you used. CW: It’s a handcycle that has 27 gears—a four-wheeled vehicle with each wheel articulating independently. But it was really like taking a Mars Rover and running it on arm and pedal power. We could roll over things pretty easily. I was just pedaling the whole time. JP: What kind of modifications did you make to the vehicle? CW: We made some significant modifications: shortened it up, made it narrower, made it lighter and increased the traction. That all made a huge difference.
We changed some of the drive-train stuff and some of the internal gearing into traditional bike gearing, which helped as far as efficiency was concerned. So we did a variety of things. For me, it was just about putting in a lot of long hours. We went and did the White Rim Trail in May of last year, covering 105 miles in three days. Our process was really about getting used to going over a lot of challenging terrain, because I knew that’s exactly what I was going to see on the mountain. As I became more skilled and more proficient, I could also become more efficient. JP: Now you’re a Hall of Famer who has been to the top of the world. What’s left for you? CW: Most of the goals I set now are for my foundation. The mission of the One Revolution Foundation is to gain equality for people with disabilities by eliminating obstacles, and one of the obstacles that we see a lot of is public perception, which is part of the reason I did the climb in the first place. There’s a sense of pity, as in, ‘Oh, it’s too bad what happened to you.’ What we’re trying to portray instead is that what happened to you is not nearly as significant as what you do with what happened. So my climb and the Hall of Fame thing, in a lot of ways, are just stepping stones to my ultimate goal and give me a little bit more legitimacy. People listen to me now, and they look at what I’ve done and see that there’s some substance there. But we’ve still not even remotely approached my ultimate goal at this point. These are just starting points, because we’re really about increasing a voice for people with disabilities. by Josh Pate Mount Kilimanjaro photos by Mike Stoner Expedition Photographer and Videographer one-revolution.com People magazine’s 50 Most Beautiful People (1998) people.com/people/archive/article/0,,20125242,00.html
Chris conquering Mount Kilimanjaro ABILITY 17
In search of adventure, Andrew Shelley rides a long-tail boat to an island in Phuket, Thailand.
y age 29, Andrew Shelley had secured himself a solid education and a plum job as a systems engineer for an advanced technology corporation. But he still couldn’t shake the feeling that something was missing in his life: adventure. Defying his degenerative muscular disease, his 90-pound body and the skepticism of his own family, Shelley clocked out of his occupation for good and set off to see the world, exploring New Zealand, Cambodia, Thailand, India and Dubai in a Frontier X5 all-terrain power wheelchair from Magic Mobility and Innovation in Motion. Now at age 31, Shelley is rolling his documentary film, Beyond the Chair, into the festival circuit. ABILITY’s David Radcliff met with Shelley along with filmmakers Dusty Duprel and Rachel Pandza to discuss their remarkable journey. David Radcliff: Drew, this film seems particularly epic in the sense that you were feeling frustrated with your own body and your limitations and just decided to pack up and travel the world. How did you even come to that decision? Andrew Shelley: I have muscular dystrophy, which is a progressive wasting away of the muscles. So I had gotten to a point where I couldn’t walk anymore and needed a power chair. I really didn’t want one, and I kept putting it off. But once I finally did get it, I realized, “Wow, I can go everywhere! This thing could really take me around the world!” Radcliff: That must’ve been pretty liberating.
Shelley: Yeah. I was at a point at which I really wanted more out of my life. I was tired of doing the same thing every day, and I knew I wasn’t going where I wanted to, so I quit my job and said, “I’m gonna get out of here.” Radcliff: And you’re surprisingly non-chalant about that decision. In the film, your mom just says, “Andrew called me up and said he was going to travel around the world.” It was really that simple? Rachel Pandza: Well, I think his mom was pretty freaked out at first. Shelley: She and her friend had this crazy idea that they’d follow me and be in all the same cities that I’d be in, maybe meet up once a day or if I needed anything. But I thought, “no thanks.” Because the whole purpose of these things is to get away from your parents—to figure it out for yourself. Dusty Duprel: I was Drew’s roommate, so I think Drew’s parents had assumed we were going along with him to help him travel. They’d say, “I’m sure he’ll be fine because he’s with his crew.” But anytime we’d explain that we weren’t there to help Drew, just to observe, either they didn’t want to hear us or they pretended not to. Radcliff: And what was your feeling, Drew, about having a crew around? It’s not exactly as if you were going out there with strangers. These are friends of yours.
With the help of a guide, Andrew Shelley (front) rolls downhill in an inflatable orb in Rotorua, New Zealand.
Shelley: Sometimes it was frustrating, because they intentionally weren’t there to help me, so they’d stand back and film me doing things myself. But that’s how I wanted it. I wanted to have to provide for myself and see if I could do it. Duprel: The only times we would help would be if there were some kind of medical emergency, but not in dayto-day activities. It even got to the point where we’d thought Drew was relying on our companionship more often than he was actually alone, so we started staying at separate hotels, away from him. His mom would call and sometimes we’d have to be careful what to tell her. Shelley: I think a lot of parents, especially parents of people with disabilities, have this fear of letting go of their kids. They want to be there to help them and protect them. But really the best thing for anyone is independence. I’ve traveled with my parents before, through Europe, but it’s only so much fun with your parents, you know? Radcliff: Right. Duprel: The thing is, Drew was a 29-year-old guy at the time, but this was really his first rite of passage, in a way. And he had to get out and be on the other side of the world in order for it to happen. Pandza: I think a lot of people actually perceived this project to be more about recklessness than about independence. It just wasn’t understandable to them. “Why
would you endanger yourself doing everyday things on top of this international trip?” Radcliff: And how long was this trip, altogether? Duprel: Two months. It was originally going to be longer. You have to understand, though, that just sitting in a chair all day is a piece of work for Drew. It requires constant muscle activity, and then there’s malnutrition, constant travel, exposure to airplanes with poor circulation, so his body pretty much tapped out after two months. Shelley: But I could go off-roading and kayaking and backpacking on this trip and do all of these crazy things, and then I’d go back to my hotel and slip and fall in the shower. I mean, everything is dangerous if you really look at it. Pandza: I think the trick was just to trust that the right things would happen and not be afraid and not hold ourselves back. First just go out there, take the trip. Then you’ll figure it out once you get there, rather than come up with all of these excuses not to go beforehand. Duprel: On the surface, as filmmakers, the concept was interesting to us—a guy with a disability in a wheelchair traveling the world by himself—but then, as we started to film everything, we really got to see that there was a lot more to why this trip came about in the first place. I think Drew was looking for solutions to his work, to his relationship with a girl, and this general battle of “where is my life heading?” Everybody gets to a place where ABILITY 19
World traveler Andrew Shelley (center) is helped to his motorized chair on top of Fox Glacier, in the south island of New Zealand
you wake up one day and you realize, this isn’t the path I want to be on. So I think that was really the start of it. Radcliff: That sort of self-evaluation speaks well of you, Drew. Especially now, when a lot of people might not be happy with their jobs or their lives, but they maintain a status quo because they don’t know what else is out there. But this kind of adventure—I mean, how do you even fund a project like this? Duprel: Drew paid for his own trip, and then the three of us formed an LLC and got some investors. But our budget was just enough to film this project. So there were many times when we were moving without money or food, and then the next week we’d find an investor. In that way, the film really mirrors the trip itself. We left not knowing what was going to happen, and answers and solutions presented themselves as we went forward. Pandza: We also realized, looking back at this project, that Drew’s story really is similar to the hero’s journey you see in most films. A lot of things in his personal life were causing turmoil and moving him to go on this trip, and he has a lot of ups and downs during it and comes back a little different than before. So I think that’s something audiences will really respond to. Radcliff: Were there a lot of difficulties about this trip that you didn’t predict? Anything you would handle differently if you had to do it all over again? Shelley: I’d probably plan more. I’m the sort of person 20
who tries to fly by the seat of his pants, but I think what I’d really want is more time. I’d like six months to fit in all of the things I wanted to do. I would’ve liked to have spent a week in each city instead of a day or two. Pandza: I think people in this country are very acclimated to not having a lot of change and not traveling in the way that Drew did. So what we were doing was a little scary for people to begin with. “You’re not staying in a hotel? You don’t have a plan? You’re going off-roading?” Shelley: Yeah, people thought I was crazy when I told them I was planning to stay in hostels. I couldn’t even get friends to come with me. “Why would you want to stay in a hostel? Hostels are dirty.” But they’re actually really cool places to meet people. Duprel: And the thing about hostels is, you’re overseas and you don’t know anybody, and then all of a sudden there’s someone from your country there. So you have an instant friendship, a real connection, even if it’s only for a day or two. Radcliff: How accessible were the places you visited, in terms of disability accommodation? Shelley: Most of the hostels were actually pretty good and had accessible bathrooms and showers. And when I was researching, I noticed that most places have a couple of steps going into the building, so my dad made me these lightweight aluminum ramps that I could just carry with me. Those were sometimes lifesavers. It was too
Cruising over a wooden ramp, Andrew Shelley explores a river shore in Bangkok, Thailand.
expensive to rent a wheelchair van in most places, so I used the ramps a lot to get into taxis. Duprel: The real problem is that Drew is girl-crazy. So it didn’t matter if a place was accessible or not accessible, if there were girls in there, that’s where he wanted to stay. There was one hotel where he couldn’t get to the bathroom, but he wanted to stay there more than anywhere else, because of the girls. We spent a whole day crossing Mumbai just to find out that one place wasn’t accessible at all. Radcliff: Drew, I know you were an engineer before this trip and that your father is an engineer too. Are you still doing any of that kind of work now? Shelley: No, not anymore. Now I just want to share my story with people. Pandza: Right now he’s writing a book and trying to get into motivational speaking. I think that’s something he realized when he came back from the trip: he didn’t want to be an engineer anymore. Radcliff: Were the people you met in your travels uneasy around you or did you find them to be pretty welcoming and accepting of your disability? Shelley: Very welcoming. It seemed like everybody would gather around me. Some people would just stare, you know? Sometimes you’d have 50 people around you, staring. A lot of people would help lift me into the
taxis or help take my chair apart. Pandza: People were actually a lot nicer than I’d expected. They would see Drew, befriend him, help him, talk to him. I think there’s a common bond in which Drew brings something to people and people bring something to him. And some people were very interested in learning about his chair, even if there was a language barrier. Radcliff: That’s interesting, because I think a lot of people would just assume that once travelers with disabilities leave their homeland they won’t get much assistance. But it sounds like you guys got a lot of help, so that had to be encouraging. Pandza: I think even moreso in the third world countries, actually. In Cambodia, the people were just amazingly nice and always wanted to help. Little kids were coming up and were curious about Drew. Everyone was so generous. Duprel: There was less concern that Drew had a disability and a lot more interest in his chair and how it worked. Radcliff: It’s always interesting to me when family sometimes becomes more of an obstacle than the outside world. In the end, it was your family you had to persuade, and in the outside world everybody was fine. Duprel: I think that also carried over to Drew’s career choice, actually. His family might tell him, “You need to be an engineer because you’re not going to be able to ABILITY 21
Celebrating an excursion across the globe, Andrew Shelley spins donuts by a lake in Queenstown, New Zealand.
use your body.” But it’s really all about overcoming all these things to be your own person. Everybody has to go through that, but Drew has to go through it more. Most people never stop to say, “What will make me happy?” It’s usually more about, “This is what I need to do to survive. This is what I’m going to do when I finish school.” So there’s never much time to think, who do I really want to be? And in the film and on the trip, we got to see Drew try to answer some of these kinds of questions. A week in, he was talking to people about how they survive, about how they make money. Pandza: And as society and Drew’s friends and family are all trying to help him find the “right” way by choosing the easiest way, they’re also conforming him to what he may not want to do at all. I think that’s part of what will help make the film successful. It’s about the American story. Go to college, get a job, and then sometimes you find out you’re not happy or you’re doing things other people told you to do. And you don’t have a chance to sit down and rethink your life. Shelley: Yeah. My dad is an engineer, his dad was an engineer, my uncles are engineers. I was always very hands-on, so engineering was something I was good at. I liked it, and I liked being around like-minded people and having a good level of responsibility at Lockheed Martin. But I knew it wasn’t enough. Duprel: There’s a different mindset an engineer might have in terms of evaluating his life. It’s generally about science and practicality, it’s not about art. Drew’s brother has muscular dystrophy as well, so I think their parents were just really interested in trying to make a stable life for them.
maybe he had a deathwish or something. But Drew’s brother was the one who understood that Drew used to be able to do a lot more than he’s able to do now. So this trip was really a way to try to get some of that back. Shelley: My brother isn’t quite as adventurous as I am, so I don’t know if he’d do a trip like this on his own. But I think he’s proud of me. Today I don’t think I’d have the strength to be able to do that trip again. Radcliff: So, no sequel? Duprel: Well, Drew doesn’t really like the cameras. But we’d like to try to spin this off to a TV series if we can actually get the proper funding. We filmed almost every second of this trip, so there’s a lot of footage. Pandza: 360 hours of footage. So we’ve been reliving those two months over and over. Radcliff: How has a trip like that changed your relationships with one another? Duprel: It’s really like a family, you know? I think we got to see the best and worst in everybody, and we ended up just having to accept it. We’ve been working on this project for three years, so sometimes the relationships are strained, but they’re still strong relationships. And when Drew first proposed this trip, I didn’t even think of it as a big story right away, because I knew who Drew was. This is just what he does. Radcliff: And you’re all still glad you went through with it?
Pandza: In a way, I think Drew’s brother was really the one other person who understood the point of this trip.
Shelley: Oh yeah. I have a sense of accomplishment now, and I’ve proven that I can do something like this, so now I figure I can go do even more. It was definitely worth it.
Duprel: Yeah, I think some of Drew’s doctors thought
“BY THE PEOPLE, FOR THE PEOPLE!”
ou’ve probably heard this common phrase thousands of times. But add the word “disabilities” to the phrase (as in, “By people with disabilities, for people with disabilities”) and the phrase suddenly becomes much less common. However, if ABILITY Awareness has its way, that uncommon declaration will soon become familiar music to the ears of many Los Angeles County residents. Working in concert with Habitat for Humanity of Greater Los Angeles, ABILITY Awareness and its team of volunteers are staging the build for the first Southern California “ABILITY House” in Long Beach, California. By engaging volunteers with disabilities in every step of the process of constructing a home, the ABILITY House program demolishes stereotypes and limitations while also building a home for a family in which one or more members has a disability. Although Habitat for Humanity of Greater Los Angeles and ABILITY Awareness have already partnered on several successful ABILITY Builds in which volunteers with disabilities collaborated for a day on a construction site, their partnership on the ABILITY House in Long Beach brings the relationship to a whole new level. With some high-profile celebrity support and plans for a festive groundbreaking ceremony, the Long Beach ABILITY House is scheduled to be constructed over the next year and to involve volunteer with and without disabilities at every stage of construction. Outreach for volunteers with disabilities to lend their skills to this venture is slated to begin on May 1, 2010, but several volunteer groups are already waiting eagerly to begin work, including the New Directions, Inc., a group that helps integrate injured veterans back into society during and after their recovery, and the Junior Blind of Los Angeles. ABILITY House volunteers will also have a chance to meet the family selected for home ownership, giving the construction team a unique opportunity to experience the feeling of “giving back.” On previous ABILITY Builds with Habitat for Humanity of Greater Los Angeles, ABILITY Awareness volunteers
have helped re-roof and paint a home in Downey, California, have hung drywall, used power saws to cut 2”x4”’s, and have drilled holes, installed roofing, painted, framed and raised the walls on two homes in Lynwood, California. With this new Long Beach effort, ABILITY House volunteers will be part of the construction process from start to finish. Whether laying foundation or adding the final delicate paint touches to trim, ABILITY Awareness volunteers will seamlessly be integrated in the process of working alongside a Habitat for Humanity team. Once the home is finished and dedicated, and after its new residents have moved in, ABILITY Awareness volunteers will be able to walk away with heads held high and with the personal satisfaction that comes from having helped helping their local community. Perhaps even more significant, the Habitat for Humanity of Greater Los Angeles and ABILITY Awareness volunteers will savor the satisfaction not only of having built a home for a low- income family, but also of knowing that their work has helped to shift societal mindsets from the standard, antiquated view of what society needs to do “for people with disabilities” to a more progressive mindset of how society can benefit from what can be accomplished “by people with disabilities.” by Marci Casey abilityawareness.org
he Paralympic Flame burned on an obelisk high over Whistler Village, honoring 600 elite athletes from 44 countries and celebrating the Vancouver, Canada, 2010 Winter Games. Between March 13 and March 23, athletes with disabilities competed in five sports: sledge hockey, wheelchair curling, alpine skiing, cross country skiing and biathlon. More than a series of sporting events, the Paralympics is a movement toward greater respect, inclusion, and acceptance of people with disabilities. Touting the motto “Spirit in Motion,” the 2010 Games offered fierce competition and some exciting victories. USA’s hard-fought sledge hockey gold medal, the first American biathlon win in history, and a total of 11 medals for USA women alpine skiers were just a few of the Games’ more rousing highlights.
SKIING Fog, sleet, and heavy snow plagued the first few days of the Paralympics at Whistler Creekside and Callaghan, causing delays in biathlon, cross country, and alpine skiing. Each skiing event consisted of three sections: sitting, visually impaired, and standing. “The course conditions are really variable,” said US Paralympic Team Coach Ray Watkins. “You have to fight and that’s what our team likes to do. We’re going to come out and fight.” Skiers in the visually impaired category were accompanied by guides who skied just ahead of them. Both athlete 24
and guide wore helmets with attached microphones and headphones, gear which allowed each guide to scout ahead and describe the course layout, often using words like “bump,” “steep,” and “turn” to inform the competing athlete what lay ahead for him or her on the slope. It was the type of teamwork that relied on a deep trust and connection, as evidenced by the success of double bronze winner Danielle Umstead, who was guided by her husband, Rob, and who took medals in Downhill and Super Combined. Seattle native Mark Bathum took the silver in Downhill with his guide Slater Storey. At the victory podium, individual medals were awarded to guides and athletes alike. Women in the alpine “sitting” competitions skied outstanding races as well, leading to the accumulation of more USA medals than in any other sport in these Games. Stephani Victor, a filmmaker and actress from California, won gold in Women’s Super Combined, and Alana Nichols, USA’s most decorated athlete in these Paralympics, won gold for both Downhill and Giant Slalom. Victor nabbed two silvers, in Giant Slalom and Slalom, while Nichols won silver in the Super G, as well as bronze in the Super Combined. Laurie Stephens won silver in Downhill. Two alpine team members this year were military veterans. Heath Calhoun served in the army in Iraq and carried the American flag during the Opening Ceremony at BC Stadium in Vancouver. Chris Devlin-Young, who served in the Coast Guard, medaled four times in previous
Paralympics Winter Games. He was the 2008 World Cup champion in the Super G.
BIATHLON Less popular in the US than in other parts of the world, the biathlon draws upon expertise in cross-country skiing and rifle shooting. Although the Federation of Russia won 16 medals in the biathlon, it was a former soldier of the Afghan War, Andy Soule from Pearland, Texas, who won the first American medal in the biathlon, in either the Olympics or Paralympics. Soule was also the first American to win any medal at the 2010 Vancouver Paralympics. Kelly Undekofler, the other member of the Biathlon team, came in 13th in the women’s standing.
CROSS-COUNTRY SKIING Team USA’s six-member cross-country team, including veteran Sean Halstead, pushed itself to the limit, but was unable to take home a medal. “I didn’t ski fast enough,” said Chris Klebl from Heber City, Utah. “It’s the standard World Cup field that we see every race. Some people obviously stepped it up. Most of the usual contenders were at the top and there were a couple who were faster than they have been recently.” Monica Bascio from Evergreen, Colorado, was the only American to qualify for semi-finals Sunday and finished fourth in the first two semi-finals. Veterans Sean Halsted, from Euphrata, Washington, and Andy Soule finished 10th and 11th, respectively, in a field of 35 athletes. The Federation of Russia dominated cross-country, winning 22 medals.
Sit Ski Slalom
ADDITIONAL PARALYMPIC NOTES
wheelchair-based sporting series to rehabilitate World War II veterans before eventually expanding to include more athletes, non-military members, and people with a variety of disabilities. By the first Paralympics in 1960, it was no longer required that athletes be soldiers in order to participate.
Whistler Village, home of the Victory Celebrations and podium, was dedicated to the Paralympians. Shops were filled with Olympic and Paralympic souvenirs. Trees were decorated with delicate white lights, bands played, and wide-screen televisions stood in the village squares, displaying the intricacies of different Games.
At this year’s ceremony, three athletes were inducted to Paralympic Hall of Fame, including Christopher Waddell, who was the first paraplegic to climb Mt. Kilimanjaro and who has won five golds and four silvers in past Paralympics.
Individuals with visual impairments who participated in the biathlon had an array of fascinating technology at their fingertips. When athletes reached the shooting area, their guides handed them headphones which emitted a pitch that increased as the athlete’s aim drew closer to the bull’s eye. After the athlete shot, the guide then took the headphones, handed the skier his poles, and both engaged in the cross-country skiing portion of the race. A standard equalizing system was put into place to account for different disabilities. Whether athletes at the Games were walking or rolling in chairs, the festive atmosphere that surrounded them emphasized a dedication to the spirit of the Paralympic Games. Between the podium and the ski mountain, a small geodesic dome exhibited “Spirit in Motion,” essentially a mini-museum on disabilities that outlined the history of the Paralympic Games. The Games began as a
While skiers competed at Whistler and Callaghan, Vancouver was brimming with the Paralympic Spirit. Though the Olympics had ended two weeks before the Paralympics had begun, the enormous cauldron initially lit for the Olympics steadily burned at the waterfront for the duration of the Paralympic Games. The Paralympic Opening Ceremony at BC Stadium in Vancouver entertained 60,000 spectators and included outstanding performances honoring the 1300 athletes, coaches and guides. Performers with disabilities breakdanced on the their hands, wheelchair users danced in choreography with 10-foot-tall balloons that displayed images of athletes, and flames shot from one of the two stages as a raucous band played. Between songs, poems, and luminous projections, audience members shared teary eyes and the widest of grins. ABILITY 25
USA made semi-finals inCurling
The Opening Ceremony concluded with the lighting of the Vancouver Paralympics torch, signaling the beginning of the Tenth Winter Paralympic Games. An hour and a half south of Whistler, Vancouver was the site of the week-long round-robin tournaments for wheelchair curling and sledge hockey.
WHEELCHAIR CURLING A quiet, almost solemn sport, wheelchair curling pits teams of five against one another as each sends a 42pound rock down a narrow strip. Unlike other curling, wheelchair curling does not include a “sweeper” who brushes the ice before the rock. Instead, an attendant wipes the rock before it is used in play. Additionally, a person of each gender is required on every team. Jacqueline Kapinowski from Point Pleasant, New Jersey, was “Lead” on USA’s wheelchair curling team. In her first year of curling, Kapinowski made Team USA and won bronze at the 2008 World Wheelchair Championship in Sursee, Switzerland. Off the ice, Kapinowski is a wheelchair-racing enthusiast who has completed 52 marathons. In addition to being an expert wheelchair curler, Kapinowski hopes to compete in track and field at the 2012 Paralympic Games in London. Other members of the US team included the “Skip,” Augusto Perez, USA Curling’s 2008 Male Athlete of the Year, military veteran Patrick McDonald, James Joseph, who competed at the 2006 Paralympic Winter Games and in three World Wheelchair championships, and James Pierce, who competed at the 2006 Paralympic Winter Games and in three World Wheelchair championships. The Americans, who did well through their first sessions, reached the semi-finals. The wheelchair curling gold went to Canada, the silver to Korea, and the bronze to Sweden.
SLEDGE HOCKEY Though it looks similar to other forms of hockey, sledge hockey firmly attaches each of its players to a metal sled that is balanced on two blades. The sledge 26
America’s Sledge Hockey Team wins gold medal
hockey player’s stick essentially serves dual functions as a scoring tool and as a propeller, allowing athletes to slip it up and down swiftly as they glide along the ice. Vying for the gold, sledge hockey players flew across the ice, smashed into plexi-glass walls, and swarmed the goalie while speakers blared the music of Lady Gaga, Justin Timberlake, Taylor Swift and even the theme from Green Acres. “The energy is building,” said Andy Yohe, the captain of Team USA. “All the folks in Canada love hockey and it’s exciting just to be able to come and play in that environment.” Yohe, who lost both legs while trying to jump onto a train, is a hockey fanatic and a roller hockey player for the Bettendorf, Iowa Young Guns. After a grueling week of round-robins, the US faced Japan in the gold medal games. Dodging flying pucks and a dedicated adversary, Team USA secured an astounding victory when goalie Steve Cash completed a total shutout of the opposing team. This brought the US sledge hockey team its second gold medal, a victory made even sweeter for the US team as it occurred on rival Canada’s home turf. Defeated by Japan in an earlier round, Canada’s sledge hockey team came in fourth after Japan and Norway.
CLOSING CEREMONY At the Closing Ceremony at Whistler, many called this year’s Games the best Winter Paralympics ever. “Many of you will go home as champions,” said John Furlong, CEO of the Vancouver organizing committee. “You all go home as winners. You have been remarkable ambassadors of the human spirit.” As Furlong spoke, sparkling flames radiated around the surrounding mountains as skiers carried the final torch and passed it on to the Federation of Russia, which is set to host the next Winter Games in Sochi, 2014. by Elizabeth Corcoran Murray photos by Paul Murray paralympic.org
David Coffey, MD practices Pediatric/Adolescent Psychiatry in Los Angeles, California 28
hen your child or teenager demonstrates emotional or behavioral challenges, the task of finding the appropriate mental health professional can be daunting. When your teenage daughter has just confessed that she has been taking diet pills and laxatives to lose weight, you might feel a little like Dorothy, unexpectedly thrown by a tornado into the strange world of Oz. Maybe your nine-year-old son is still sleeping in your room and pretends to be sick every Monday morning to get out of going to school. Perhaps your seven-year-old is having trouble learning to read and is getting in trouble for talking too much in class. If any one of these scenarios seems all too familiar, know that you are not alone: it is estimated that one in five children in the United States battles with a diagnosable mental disorder at some point in his or her development. So what can be done to help your child? The first step is to decide to seek out professional aid. It is estimated that half of all children in the United States who have a diagnosable mental illness go untreated. Lack of treatment can put a child or teenager at risk of falling behind in his educational, emotional or psychological development. Once you have made the decision to seek treatment for your child, knowing where to turn is often the next biggest stumbling block. Dorothy had the Scarecrow, the Cowardly Lion and the Tin Man at her side early in her journey. Two easily accessible allies when you begin your own journey toward the mental health of your child are your child’s school counselor and primary care doctor. These professionals can often suggest an initial treatment or refer you to a mental health expert who can best help your child. Once you receive referrals, sorting out the qualifications from the alphabet soup of titles can be daunting. Should you take your child to an MFT, LCSW, PsyD, PhD, or an MD? The table at the conclusion of this article describes the training of each type of mental health professional, but all of these practitioners can provide psychotherapy to patients. Only psychiatrists, however, can prescribe medication. Some mental health disciplines have national board certification procedures as well, and most states have licensure requirements for each type of medical professional. Your state medical board website can help you verify licensure status and possibly board certification before you move forward. Treatment for emotional and behavioral problems in children and teens involves a variety of psychotherapies or medications. There is a wide range of psychotherapies to consider, including counseling, group therapy and educational therapy, play therapy, cognitive behavioral therapy and psychoanalysis. It is generally advisable to try non-medication interventions first, although some conditions or emergency situations might call for medication as the most suitable first line of treatment. Ask your pediatrician or school counselor at the outset of the referral if your child’s situation merits medication. If
psychotherapy is failing to yield timely progress, for example, ask the therapist if a referral for an evaluation for medication might be warranted. When it comes to prescribing medication for your child, the professional with the most expertise is a Child and Adolescent Psychiatrist (CAP). Unfortunately, however, CAPs are in short supply in the United States. It is estimated that, while there are only 7500 CAPs in the nation, there are 15 million children and teens who require treatment in this field. Even in big cities, it might take months to secure an appointment with a CAP. Because of this shortage of Child and Adolescent Psychiatrists, about two thirds of all medication prescriptions for mental health diagnoses for children and teens are prescribed by non-CAPs: pediatricians, general psychiatrists, family practitioners, neurologists, and other physicians. Here are some tips on getting to a specialist for medication treatment: 1. If your current non-CAP prescriber is not able to achieve sufficient reduction in symptoms, or if your child’s side effects are becoming unmanageable, ask your prescriber for a referral to a CAP. 2. Visit aacap.org, the website for the American Academy of Child and Adolescent Psychiatry, and click on the link for Child and Adolescent Psychiatrist Finder (found under “Quick Links”) to identify a CAP near you. 3. Check your insurance provider’s website and search for CAPs in your area who are covered under your plan. 4. If no CAPs are listed within 50 miles of your home, contact your insurance company and request that it pay for treatment with a CAP outside of its network. Many parents are reluctant to consider medication for their children, perhaps due to an abundance of media reports about children being overmedicated or inappropriately medicated. After the Food and Drug Administration released a warning that antidepressants could increase suicidal thinking in children and teenagers, prescription rates for antidepressants dropped and, ironically, the rates of suicide completion increased. It seems a reasonable truth, then, that wisdom lies in a safe middle ground between over-medication and no medication at all. If depressed suicidal teens are not responding to psychotherapy alone, they may best be served by a combination of anti-depressant medications and frequent psychotherapy. Here are some easy guidelines to follow in determining when medication for a childhood mental health disorder should be considered: 1. Your child’s agitation, aggression, recklessness or poor impulse control has put the child, family members, or others at risk of imminent physical harm. In such situations, hospitalization should also be considered. 2. The symptoms of your child’s mental health disorder ABILITY 29
impede his or her ability to meet developmental milestones (e.g., academic progress, behavior commensurate with intelligence level, healthy familial relationships, an ability to make and keep friends). 3. Psychotherapies show little or no evidence of successful treatment but medication treatments show robust evidence of successful treatment (e.g., psychosis). 4. Non-medication interventions, such as psychotherapy, have failed to yield results. Additionally, medication treatments have been proven to be effective instead of, or in concert with, psychotherapies. In addition to psychotherapy and medication, a variety of other interventions exists to get kids back on the road to mental health. This range includes therapeutic and special education schools, speech and language therapy, and occupational therapy. When multiple professionals are involved in the care of your child, it is often helpful for them to communicate and work in concert with one another. Once a sound treatment plan is in place, your child or teen can get back on track to grow and reach his or her full potential. With help from the right wizard or a good witch (and a few other new friends), your family can effectively ease back onto the road to a place like home.
TYPES OF MENTAL HEALTH PROFESSIONALS PSYCHIATRIST: A physician with a doctor of medicine (MD) degree or osteopathic (DO) degree, with at least four subsequent years of specialized study and training in psychiatry. Child and Adolescent Psychiatrists (CAPS) specializing in treatment of children and teenagers complete a two-year fellowship in child psychiatry and are then eligible to receive a subspecialty board certification in child and adolescent psychiatry. PSYCHOLOGIST: Might have a master’s degree (MA or MS) in psychology or a doctoral degree (PhD, PsyD, or EdD) in clinical, educational, counseling, or research psychology. Most states license psychologists to practice psychology. Psychologists can provide psychological testing, evaluations, treat emotional and behavioral problems and mental disorders, and provide psychotherapy.
SOCIAL WORKER: Possesses a bachelor’s degree (BA, BS, or BSW), a master’s degree (MA, MS, MSW, or MSSW), or doctoral degree (DSW or PhD). In most states, social workers take an examination to be licensed to practice social work (LCSW or LICSW). The type of license depends on the social worker’s level of education and practical experience. Social workers provide various services including assessment and treatment of psychiatric illnesses, case management, hospital discharge planning, and psychotherapy. PSYCHIATRIC/MENTAL HEALTH NURSE: Psychiatric and mental health nurses may have various degrees ranging from associate’s to bachelor’s (BSN) to master’s (MSN or APRN) to doctoral (DNSc, PhD). Depending on their level of education and licensing, nurses provide a broad range of psychiatric and medical services, including the assessment and treatment of psychiatric illnesses, case management, and psychotherapy. In some states, some psychiatric nurses may also prescribe and monitor medication. LICENSED PROFESSIONAL CONSELORS: Licensed Professional Counselors have a master’s degree (MA or MFT or MFCC) in psychology, counseling or a similar discipline, and typically have two years of post-graduate experience. They may provide services that include diagnosis and counseling (individual, family/group or both) and have a license issued in their state. They may also be certified by the National Academy of Certified Clinical Mental Health Counselors. PSYCHOANALYSTS: Any of the above providers who have completed their licensing requirements are eligible to pursue further training in psychoanalysis. Psychoanalysis involves frequent patient-professional visits (on the order of three or more times per week) and can take the form of play therapy for younger children and lying on the couch for teenagers and adults. Psychoanalysis training takes five to 10 years and also offers a subspecialty training in child and adolescent treatment, which can require an additional two to four years of education. Accreditation and certification of psychoanalytic training are overseen by the International Psychoanalytic Association and the American Psychoanalytic Association. by David Coffey, MD davidcoffeymd.com
Photo by: Nancy Villere - CrushPhotoStudios.com
s the big-hearted matriarch on The Learning Channelâ€™s Little People, Big World, Amy Roloff navigates all of the responsibilites and challenges of raising a family while continuing to earn a slew of fans in the process. In addition to being a reality television star, Roloff is a soccer coach, a pre-school teacher and a philantrophist whose Amy Roloff Charity Foundation makes full use of her celebrity by benefitting people in need. ABILITYâ€™s Chet Cooper caught up with Roloff to talk about her involvement with the Royal Carribbean celebrity cruise, her life in front of the camera, and her favorite job: being a mom.
(l to r): Jacob, Zachary, Matthew, Molly, Amy and Jeremy Roloff
Chet Cooper: Today we’re sitting onboard the Queen Mary, but I know you’re also going to be on another ship soon. Amy Roloff: That’s right. It’s part of the Royal Caribbean Oasis of the Sea. Royal Carribbean had given away an auction package for a major golf and dinner event that I put on last year, so I’m going on a celebrity cruise, and part of each reservation on the cruise will go to benefit my foundation, the Amy Roloff Charity Foundation. It supports kids, at-risk youth and disability groups. Cooper: How long has your foundation been around? Roloff: About a year now. Through the opportunities and advantages that I’ve had in the last five or six years, I figured it was time to give back to all of the things that are important to me. One of those things has been the Dwarf Athletic Association of America (DAAA), which I happen to be very familiar with. But I also help fund an organization for foster care parents and for the kids they adopt, as well as for people in low-income senior housing. We’ve also supported a family homeless shelter, which is one of only a few in the Portland area that brings in the whole family instead of dividing them up. Cooper: You’ve got a lot going on in your life and yet you still have time to be on TV. Tell me about your show, Little People, Big World. How did that all come about? Roloff: The Learning Channel (TLC) came to us about five or six years ago, and so we suddenly realized we were given a great opportunity to educate people about dwarfism. When it was offered that we do a show about our lives, my husband and I were like, “Wow, nothing like this has even been on the air.” Nothing had depicted dwarfism in an everyday way. Lo and behold, a few 34
episodes turned into six seasons. And here we are. Cooper: Has being on the show changed you at all? Does it change how you see your disability? Roloff: I think I’ve gotten to know myself a little bit better, actually, and all the opportunities that I’m more than able to do. Exposing your life to millions of people, especially as a parent, is a daunting thing to begin with. But I think this very public experience has helped each member of my family grow. I think it’s strengthened us so that we recognize our flaws and the best parts about ourselves. But in the end, I think the biggest change is in the general perception people have of dwarfism and how people approach me. They’ve gotten to hear my story on the show, and I in turn am able to hear their stories because they feel like they know me before they’ve even met me. In some ways that’s very humbling. We each have our challenges, but someone always has a challenge that is uniquely different from, and maybe even more challenging than, yours. So the show has been a great experience of getting outside of our boxes and looking at other people and the things they’re going through and how maybe we’ve helped them or inspired them. Cooper: Are there any examples? Experiences where you’ve made those kinds of connections? Roloff: Oh, sure. I mean, just as I was going through the airport, this security guard came up to me and said, “You know what? I am so thrilled to have met you. You helped my wife and I through something we didn’t even know was going to happen.” They had found out that they were going to have a dwarf child, a dwarf baby. So just the experience of having watched our show encouraged them and inspired them. It gave them hope, and it didn’t
create this sense of the unknown for them. They were having a baby, it happened to have dwarfism, but through our show, they were also able to see adults who were dwarfs. So it gave some dimension to their expectations. It got them thinking, “You know what? My child’s going to be okay. He’ll be able to be whatever he wants.” Cooper: It’s a boy? Roloff: I believe it is, yes. A boy about 19 months old. And that kind of connection with this stranger was inspiring to me because often as a parent you’re in your own environment, you’re with your own family, and you forget that regardless of what you do, you can still be inspiring. I remember another incident, this time at the beach, when a woman came up to me and told me that she had gone through some really heavy medical issues for about a month. She had gone in for a surgery and then doctors had found something else wrong with her and so she had to have a second surgery. But she watched our show, and by watching our show she felt inspired, and that got her through the surgery. It took her mind off of all of the stuff that she was going through medically. And in turn, I told her about my foundation and what I was hoping to do by utilizing the opportunities that I had been given in order to help other people. Right then and there this woman wrote a very significant check for the Foundation.
Cooper: Can you give me her email address? (laughs) Roloff: (laughs) Never would I have thought that I could be as inspiring or that my family could be as inspiring through the show as we apparently have been. In the emails people send us, some people think we’re great, some people think we’re not so great. But I think in the long run it’s been wonderful, because I’ve been able to start my own charity foundation, to look beyond myself, and to help out some kids. Cooper: Have you thought of tying any of the non-profit work into the television show itself? Roloff: The show actually incorporated my first major non-profit event, which was the golf and dinner. So that’ll show up in season five, as well as all the dramatics that led up to that event and so forth. The sad thing is, I think too many people don’t think many people with challenges or disabilities are able to contribute to society in a truly significant way. I want to use whatever influence I have to help non-profits which don’t get the recognition they normally would but which are very significantly helping their local communities. I worked at a Habitat for Humanity site with my kids, and that was quite an experience. I’ve got average-sized kids and a younger son who is a dwarf like myself, but my own mindset going into this was, “What am I going to do? What am I capable of doing to help this process happen?” I mean, I knew what my average-sized son ABILITY 35
Roloff family taking a slow trip to China by way of shovel
could do. He and another gentleman, who was probably one of the contractors there, set a goal to put the whole roof on in two days. He was bound and determined. And he’s built and physical. But then I thought about my youngest son, my dwarf son. What would he be able to do? Sure enough, he found a niche where he helped put in all the lower windows. And me, I climbed up a ladder and put all the braces up on the sheet rock. We each found our niche, because we each had different capabilities. Cooper: That must’ve felt great. Roloff: It is empowering. In your mind you know you can do it, but you just don’t know how to go about doing it, or maybe someone has never given you that opportunity. That’s why I’ve spoken to a lot of high-risk youth and pregnant teenagers, trying to reach them at a point where they’ve had so many people telling them, “you can’t.” And even if you’re able-bodied, a lot of people will tell you, “you can’t.” But whoever you are, you’ve got to figure out who you are and what you’re capable of doing. For many people with disabilities, it’s a struggle sometimes each and every day just to do the basics. But once you get that empowerment of going beyond just the basics, it’s as if a whole world opens up for you. And that’s what DAAA did for me. Just the experience of playing sports—I couldn’t imagine. All of a sudden, I finally realized what my brother loved about sports, what so many guys love about sports. And then I found out, “Oh, my God, I’m too competitive sometimes!” Cooper: Well, that sort of thing makes for good television. Roloff: (laughs) It does. Ever since we started the show, which has now been a part of my life for the last six years, I’ve done some crazy stuff. Little stuff, but crazy 36
enough for public. But listen, before the show, being an at-home mom for the majority of my time, my world is my four kids. You become very protective of that reality. Your world is sporting events, parents’ groups, and stuff like that. The television thing has kind of broadened my universe. I went scuba diving in Las Vegas. I’ve eaten grub worms. Silly stuff like that. Cooper: How many cruises have you been on? Roloff: This one in June will be my fourth. And to me, it’s fabulous. These cruise ships create great experiences for someone with a disability because everything is contained. You’re not on and off and stopping and going. You can choose to go on the port of call or not. They have everything on these ships. Cooper: I went on a cruise for a group of deaf and hard of hearing. There were more than 3,000 people on the ship. I don’t sign, so it was interesting to experience being the odd person out. I had to figure out how to navigate not only ALS (American Sign Lanuage) but international sign lanuages too. Roloff: Isn’t that funny? You would think that sign language would be universal and all the same. Cooper: And Royal Caribbean had actually prepared for a year in advance so that their staff all knew basic sign language and represented something like 70 different countries. Roloff: When my husband and I went on our inaugural cruise, I had to be pretty prepared to discuss our dwarfism. I am, gratefully, very able as a dwarf person. I’m married to a guy who has to walk on crutches and use a scooter, and I know a lot of other dwarf people who have multiple medical issues. But to have the freedom of just setting sail, especially when you’re on vacation and you’re spending your time and financial resources, is no small thing. So sometimes you have to
help the staff understand that what they do isn’t always going to be useful to a short person. For example, if I go through a buffet line but the counter is way up above me, I think, “Hello?” At the same time, you don’t want to stop the staff’s flow of how they deal with all of these people on the ship. You just hope that somebody is in tune with you, that the organization knows what it is doing. The employees should say, “Okay, we’ve got to make a slight adjustment. Very minor, but something that would make it easier and make shorter people feel comfortable.” A lot of it might just come down to pre-communication, ensuring that things are laid out smartly ahead of time. Cooper: On the subject of adjustments, do you use hand controls to drive your car? Roloff: No. I am fortunate enough that I have pedal extensions on my car that sort of raise the pedals to me. I’ve never driven with hand controls in my entire life, except for in driver’s ed. That was an experience—a lot of driving up on curbs. Cooper: This next cruise ship you’re going on, The Oasis of the High Seas, is apparently almost double the size of the Queen Mary in respect to passenger capacity. That’ll be interesting to get around. Roloff: Yes, we went on it on the inaugural cruise back in November. What I really liked about the ship was that it gives you the comfortable sense of having different neighborhoods right there on the ship. I mean, at Central Park, there are all these plants and flowers, and you actually feel like you’re in a park. You forget entirely that you’re actually on a moving ship. They’ve got different restaurants and a couple of shops here and there and park benches to sit on. It’s just great. Cooper: Will you be going SCUBA diving again this time? Roloff: You know, I think they may have SCUBA diving lessons there, yeah. I know the ship has this very deep pool, this entertainment aquatic area where a bunch of shows are put on with divers. They’ve got some great programs on the ship. Cooper: I was told that you went rock climbing on one of these cruises, and that your harness wasn’t zipped closed. Is that true? Roloff: Absolutely. I had to make it exciting, right? I’ve also done ziplining, which was pretty hard, and flow riding, which is kind of a boogie board thing. There’s a lot of great stuff to do on these cruises. I think on the next cruise we have a couple getting married who signed up through my charity foundation. We’ve even got a comedy club on these ships, so I actually went up on the stage and did a couple of bits.
Amy Roloff with The Love Boat’s Gavin MacLeod
Cooper: You’ve done stand-up? Roloff: No, but the comedian I was up there with was awesome, so we just kind of bantered back and forth a little bit. It was fun. Cooper: What do you think about political correctness as it relates to dwarfism and how people treat people with disabilities? Roloff: Oh, that political correctness thing. You know, I think we’ve become too politically correct, so I don’t get too offended if someone doesn’t use the right terminology. Because, for the most part, the reason is a lack of understanding. If someone is using these terms in a negative way, you can usually tell. In my own life, I use terms like “little person,” “dwarf,” “short-statured.” That’s it. The other word that has caused a lot of negativity is the word “midget,” but I think a lot of that has something to do with the tone and the connotation and the meanings that people have put behind that word today, because that was not always the case. The organization Little People of America was first named Midgets of America by Billy Barty. At the time, that might have been a palatable term and word, but because time has passed, that is not a word to use or describe dwarfism. It’s “short-statured” or “little person.” Cooper: That seems easy enough. Roloff: Yeah. But I don’t get too concerned with what people call me. It rolls off my shoulders. I’m just out there trying to let people know that, regardless of any disability, they have a lot more ability than they typically think. Sometimes you have to make your own opportunity and not wait for someone else to give it to you. amyroloffcharityfoundation.org tlc.discovery.com/tv/little-people-big-world ABILITY 37
arah Reinertsen is a motivational speaker who addresses corporate audiences across the country. As a world-class athlete, she competes in dozens of races every year. Sarah also leads a series of sports clinics and mentors other athletes with and without disabilities. She lives and trains in Orange County, California. This is an excerpt from her first book.
The race is covered on live television in the New York metro area, and in our house it was a tradition to tune in. We’d zip home from church on marathon Sunday (which is generally the first Sunday in November) so we could watch the entire event from start to finish. We didn’t want to miss one second of my hero Grete Waitz, that elegant and strong Norwegian woman who ran through the streets of New York at an unfathomable pace. I wanted to be like Grete. Knowing that Paddy Rossbach had completed nine marathons helped make the concept more than a pipe dream, and falling in love with long-distance running turned the dream into a goal. There’s a meditative quality about distance running that, once my body got used to the punishment of the road, I grew to love, so much so that 5Ks and 10Ks felt like appetizers. I was ready for a full 26-mile meal, so I signed up to run the 1997 NYC Marathon. The longest distance I’d run to that point was 17 miles, and that wasn’t even consecutive miles, but rather 17 miles in a 24hour period. But I figured if I could do 17 miles in 24 hours, 26-plus miles in six-plus hours wasn’t unrealistic. I also knew I’d had years of experience hiking through the woods with my family during our summer vacations in Highland Lake, New York, and if I could wander over bumpy terrain for hours, I could hike through semibumpy Manhattan. Sure, I wanted to run the marathon like Grete, but one step at a time; at the very least I could hike or walk my way to the finish line.
Jump at the Chance For most who’ve dabbled in running, there’s a certain mystique about a marathon. It’s a Holy Grail of sorts, a seemingly unattainable goal, the race that modern runners have been measured by since 1921, the year the 26 miles and 385 yards distance was standardized. The New York City Marathon is acknowledged to be one of the coolest in the world, right up there with the Boston Marathon and the Olympics. The route goes through all five boroughs and takes the racers past streets and landmarks that all New Yorkers are intimately familiar with. I’ve driven over the verrazano Bridge zillions of times, but seeing all the racers sprint, run, and jog over the bridge, with their multicolored track gear—it’s the helicopter shot of the 20,000-plus runners taking up every lane on every level of that bridge that always gets me— is quite a sight. The finish line is also an emotional moment; to see the reaction as they cross the tape is at once moving and inspiring. Each year a different drama unfolds: agony and heartache, joy and triumph. 38
The entry process was a relative breeze; most runners have to enter a lottery to win a slot in the field, but the New York Road Runners Club has a tradition of being incredibly supportive of athletes with disabilities, so after applying for one of the Achilles slots in the race, I was given an entry form for the NYC marathon, even though the race was three months away. I filled out the race form and sent it along with my $65 check, and when the mailbox shut, in that moment, I was both terrified and exhilarated. No turning back. It was real. I went straight home and immediately called David Balsley, because if anybody could get me through 26 miles, it was him. We discussed a tentative schedule, and I mentioned to him that I’d clipped some marathon training plans from Runner’s World, but David told me I’d need a completely different approach. “Look Sarah, you can’t run fast enough to cover all the mileage those plans suggest right now. You’re an amputee runner, and you have to train differently, and your focus should be on time.” “Time? I just want to finish the damn race.” “I mean, the amount of time you’ll be spending on your prosthetic. You have to get comfortable being on it nonstop for hours at a time.” That’s something I’d never considered, but it made total sense. “So when you make your little schedule, instead of you saying, ‘I’m running 10 miles on Saturday,’ I want you to say, ‘I’m doing a three hour jog/walk on Saturday.’ I don’t care how much
you run, or how much you walk, although I’d love for you to run as much as possible. I just want you to do the full three hours without stopping. The Saturday after that, three-and-a-half hours.” That’s not the kind of thing they’d necessarily suggest in Runner’s World... but maybe they should. Every long-ish walk was an opportunity to train, and when my classmates saw me jog-walking from place to place, they thought I was nuts. I was taking 17 credits worth of classes at George Washington University (18 is considered a full load), so between that, prepping for the race for 10 hours a week, taking a pair of hardcore yoga classes, and doing grunt work as a minimum-wage slave at a media consulting firm, I was pretty maxed out, and everybody knew it—except, of course, for me. I didn’t go out much, and I didn’t miss the bars or the party scene one bit. I went to bed early so I could go on long training runs through the best of Washington, DC, past the Jefferson Memorial with a bonus stair-climb up to the Lincoln Memorial, then down to the Capitol building, and past the White House, then back to my studio apartment in Foggy Bottom. With each run, I became both physically and emotionally stronger. I was back on track, and jog-walking toward a bright future. In terms of how I would perform at the marathon, I had no expectations. How could I? My longest training jogwalk lasted five-and-a-half hours, which had completely wiped me out; I was so sore the next day that I couldn’t even muster the energy to walk to the library. Now that I knew I could jog-walk for over five-plus hours, I could start crunching some numbers: How many miles did I cover on that five-hour training session? How fast was I running? Okay, let’s say I did three miles per hour. Multiply that times five, and we’re talking 15 miles. But the question is: ‘How much slower would I be for the last 11 miles?’ Or, ‘can I even make those 11 miles?’ I eventually guesstimated that I could do them in seven hours...or possibly eight...or maybe nine. Truth is, my time didn’t matter. I was going to finish, dammit, even if I had to walk 20 of the 26 miles. And then, in a blink, it was November 1, the day before the race. I crashed at David’s apartment on the Upper East Side. He and his beautiful wife Maggie welcomed me in, but I was dazed, not believing that I was actually going to do a marathon. Dave just tried to reassure me and showed me to their guest bedroom. The city was alive and loud: ambulances and trucks roared by, and people yelled at one another, but the noise in my head drowned out everything. I began to doubt myself and question the wisdom of signing up for this ridiculous race in the first place. But there was no backing out. Too many people were rooting for me, and I couldn’t let them down. Also, I couldn’t let me down. At 4:00 a.m., after a grand total of three hours of nervous
sleep, we took a car service to the starting area, arriving just before the verrazano closed for the day. In the spirit of helping out runners with disabilities, the New York City Marathon organizers set up an early start time for those of us who thought we’d take more than seven hours to finish—we could start at 8:30, while the other racers began at 10:45. At one point, I thought I might be able to get in under seven, but I remembered seeing 20,000 marathoners cross the verrazano on television, and it dawned on me that I could be slower just trying to negotiate my way along with that huge pack of runners. A Sunday New York Times in tow, we found a tiny spot on the wet lawn in what’s called the Start village and tried to relax; it was a cold brisk morning so we were bundled in sweatshirts and sweatpants. I wound up not really reading the newspaper, but rather sitting on it to make the ground a bit warmer since we still had a couple of hours to wait. I distracted myself by listening to the dozens of racers from other countries speaking to each other in their native languages. It was a veritable United Nations of runners, with many athletes wearing the colors of their nations’ flags; some even carried flags, or pinned them to the back of their jerseys. The Start village is a quarter-mile away from the starting line, so at 8:00 a.m., we headed over to the bridge. About 150 early starting runners gathered around: a few blind athletes with their guides, a handful of folks in wheelchairs, some elderly people with walkers, and, of course, a certain short, blonde chick from Long Island with a missing leg. The New York City Marathon isn’t kicked off with a mere starter’s pistol—that would be far too small for the Big Apple. No, the New York City Marathon is launched with a cannon...or at least it is for the regular runners. For us early starters, it’s, “On your mark, get set, go,” and then a little foghorn. Not exactly what you’d call glamorous, but it sounded grand to me. I knew I wouldn’t be able to maintain a standard legover-leg gait for the entire race, so I eased into the race with a hop-skip step, which didn’t put as much strain on my lower left back and helped me to conserve my energy. (They say the longest journey starts with a single step, not a single hop-skip, but you have to work with what you’ve got.) So David slowly jogged next to me as I hop-skipped my way across the bridge toward the New York City skyline, and the long day had officially begun. I had taken a public relations course earlier that year at George Washington, and I’d become pretty media-savvy, so a month before the race, I faxed out press releases to a bunch of New York and national television and print outlets, saying, “Paralympic athlete, 100m world record holder, and New York native Sarah Reinertsen is doing her first marathon, blah blah blah.” As a struggling college student who didn’t have any shoe or clothing sponsors, buying multiple pairs of Nike Airs had become a hardship, so I figured some TV coverage could lead to some ABILITY 39
sorely needed sponsorships. The plan worked: A couple of newspapers interviewed me, and the NBC affiliate tracked me down and told me to look for their crew when we hit Brooklyn, around the ten-mile mark. I was in pretty good shape as we continued running toward the Queensborough Bridge—we’d already been on the course for about three hours, and, thanks to David’s regimen, I could do three hours in my sleep—so my chipper banter with the interviewer and the ear-toear grin they showed on the 11:00 news that night were completely sincere and legit. I was having a great time, and everybody told me it showed. Len Berman, the NBC sports anchor back in the studio, even signed off the piece with a little, “Way to go, Sarah! Represent New York!” I felt like a true hometown hero. Almost immediately after the interview, the elite runners started blowing by us, which was incredible. We had the best view imaginable of those Kenyan wunderkinds effortlessly breezing through their five-minute miles. Then came the TV trucks, then came the average Joes who, with their 2:30 finish times, really weren’t that average. The crowds along the streets of New York were magical, and by the time we ran up First Avenue in Manhattan, I actually felt like Grete Waitz. Unfortunately, when I reached the water stop at the 16th mile, my lower back started to really bother me. I took a moment to eat a Cliff Bar and take a couple of Advils. The ibuprofen didn’t seem to do much, so we stopped at the next medical tent a few miles later, and had someone rub some Ben-Gay onto my lower left back. The smelly gel worked wonders, and the weird tingling heat kept me loose enough to get me through the next couple miles. An hour later, at mile 20, my back started singing again, but I didn’t really notice, because my entire body was a bundle of pain, not to mention that I had nothing left in my tank. Just like a lot of first-time marathoners, I hit the wall, but David wouldn’t let that stop me: “C’mon, Sarah,” he yelled, “you can do this. We’ve only got a 10K to go, that’s just six miles, you can cover that, no problem. Just don’t stop moving; it’s going to be harder to start up again if you quit.” He chuckled a little, then continued, “You’re a tough chick, not just some blonde bimbo. You finish this silly race now!” I laughed, then soon fell into an autopilot zone where I was in almost a comatose state, which might’ve been my body’s way of helping me compartmentalize my exhaustion and pain. (I once heard former championship cyclist and television commentator Phil Liggett say about the Tour de France, “You have to learn how to put up with a certain amount of suffering.” Even though he was talking about bicycle riding, you can certainly apply the sentiment to marathons. When your legs beg you to stop, you ignore their protests and keep pushing forward, regardless.) Fortunately, the onlookers woke me up, which is why I love big city races—the crowd support is always amazing. 40
Their encouraging shouts and nonstop applause have carried many a runner across many a finish line. And then came the rains. (It was in the forecast, and I was mentally prepared for it, but it still sucked.) And we’re not talking a drizzle, or even a steady November shower. We’re talking torrential downpours, accompanied by 20-some-odd-mile-per-hour winds. My clothes and shoes got drenched, and the moisture added what felt like ten pounds to my weight. I kept thinking, ‘What’s going to happen to my prosthetic? Is it going to rust? Do I have any WD-40 at home?’ I started to complain about the rain, and Dave said, “So what? It’s rain. Big deal. You gonna melt?” And then, to cheer me up and distract me, he started doing imitations of all the good cheers we had heard along the course. He did the guy that shouted out, “Hey all right, baby, the Bronx loves ya! You’re gonna make it sweetheart,” and the animated lady in Harlem who screamed, “Ohmigod, you are unbelievable! You go, girlfriend! You go!” That local flavor is part of what makes New York runs so magical. And then, arm thrust in the air and a grin plastered onto my face, I crossed the finish line in 6:32. This was just as cool as an Olympic medal, and it was even more satisfying than breaking the 100m world record, because it was sooooo much more difficult. After the race, with the rain still turning Manhattan into a flood zone, we walked back to David’s apartment on the Upper East Side—that’s right, we walked, because it’s impossible to find a cab in New York on Marathon Day. My family was waiting for me at Dave’s place; Mom, her boyfriend (now husband) Pete Fuentes, and my Aunt Simone, gave me hugs and kisses. We ordered some Chinese, and I shoved down dinner, then headed off to LaGuardia Airport, because I had to catch the last shuttle back to DC, so I’d be able to make classes the next morning. I wore my medal on the plane like a big old dork and basked in the glow of my victory. The victory, however, was short-lived. The next morning I learned that if you take the early 8:30 race start, and you finish in under seven hours, you’re disqualified, because they don’t want the masses taking unfair advantage of the jump on the crowd. So technically, I had disqualified myself by completing the race in under seven hours. It was a small bummer, but I knew what I had accomplished. My legs were sore, stiff, and living proof that I did indeed run 26-six-plus miles in 6:32. According to the official scorekeeper, I didn’t finish the New York Marathon. But if you’re scoring in the real world, I definitely finished, and definitely kicked ass. Washington, DC is beautiful, but I was beginning to find it a bland, flavorless place. I was disenchanted by the political scene, and the charm of living down the street from the World Bank had completely dissipated. Everyone I met
seemed to be a lobbyist or work on Capitol Hill, and I was ready for a change. New York had a vibrant energy that was completely lacking in Washington, and I was ready to move back home. One problem: I had zero job prospects, and you don’t move to New York City without a gig. But fate intervened in the form of Paddy Rossbach. One week after the marathon, she left a message on my answering machine: “Hey, Sarah. Great job on the Marathon. I wanted to pass along a message I got from a woman at USC in Los Angeles, and she thinks you might be eligible for a scholarship for athletes with disabilities. How would you like to go to grad school for free? Call me.” Free grad school sounded perfect. I loved learning and really enjoyed my classes at GW (especially after I straightened up my act), so I wasn’t ready to stop being a student. I never considered it, because the thought of taking out more student loans—and thus taking on more student debt—made my stomach hurt. But now, with only a month left until graduation, I was presented with an incredible opportunity to go to grad school. It would be the answer to dreams I hadn’t even dreamt. I decided to let the fates decide. I’d apply at USC, and I’d apply for the scholarship, and if both of them came through, I’d go to California. With fingers crossed, I called Paddy, who put me in touch with Mara Redden from the board of the USC Physically Challenged Athletes Scholarship Fund. The scholarship was started in honor of a former USC All-American swimmer named Mike Nyeholt. After becoming paralyzed from the neck down due to a horrible motorcycle accident, he had lost his eligibility for his swim scholarship. Fellow teammate Ron Orr pulled together a fund-raising swim-athon, with the goal of raising enough money to help Mike pay for his tuition and for a wheelchair accessible van, which would enable him to live independently and get around school. That eventually evolved into an annual fund-raising event called “Swim with Mike,” and this scholarship program. Most of the athletes on the scholarship were people who’d become disabled later in life, e.g., the star high school quarterback who got hit by a drunk driver, or the star baseball player who broke his neck diving into a shallow lake. Using those criteria, I wouldn’t qualify, but it was still worth a shot. That night, I went to the school library to find out what kind of programs USC offered. There was law school, med school, business school, a cinema program, and I was like a kid in a candy shop. Journalism still hit me at a gut level—instead of being a politician who tries to generate change, I could be a writer who succeeds in generating change. All of a sudden, knowing there was the possibility I’d be able to get into one of these programs, the world opened up for me. Two months later, in January of 1998, I flew out to LA and stayed in the Hollywood Hills with John Siciliano,
an amputee friend of mine who was going to USC on the Nyeholt scholarship. He was a gracious host and excellent tour guide. “I’ll take you to some classes,” he said, “and I’ll take you around the campus, and the scholarship people are having a planning meeting, and you can meet everybody.” I loved it. I loved the campus, I loved the California vibe, I loved riding around in John’s convertible, I loved that I could run outside in a jogging bra and shorts in the middle of the winter and I loved all the admissions people. It was a veritable lovefest, and I wanted in. I interviewed for the scholarship, and I could tell they weren’t convinced about me. Since I hadn’t done a sport and then lost my leg, since I brought my disability to the table from the get-go, I was in a gray area. I suspect their thinking was along the lines of, We’re not really set up for somebody like her. Where does she fit? John spoke to one of the people on the scholarship board, who told John, “She’s not exactly the kind of candidate we give our scholarships to. Yes, she was a high school track athlete, but that was after she became disabled; we fund athletes that were athletes before they became disabled.” John said, “She was seven when they amputated her leg. What kind of athletic career was she supposed to have? I know when she was six, she played in the town soccer league one season. Does that count?” “That’s not competitive athletics, and the amputation was because of a birth defect, so I’m afraid she doesn’t fit the scholarship criteria.” I was deflated and disheartened. The window on grad school had closed, possibly for good. I had just spent a big chunk of change on this trip out to LA, and maybe it had been for nothing. The next morning, on yet another perfect 72-degree California day, John took me for a ride around the city. I took in all the sights, resigned to the fact that I wouldn’t be seeing all that much of LA in the immediate future. We’d been driving for an hour when I spotted a mural advertising the Los Angeles Marathon right along the freeway, on the concrete wall by the 101/110 merger in downtown LA. Stuck in traffic, I stared at this display, and the wheels started turning. I asked John, “Do you know when the LA Marathon is?” He shrugged. “I have no idea. Why?” “Maybe I should run it. Maybe I could get people to sponsor me, and I could raise money for ‘Swim with Mike.’ I mean, I’m a terrible swimmer, but I know I can run. I truly am an athlete, and I would be a great addition to this school and scholarship fund, I just need to show them.” John didn’t seem entirely convinced by my plan, but he agreed to help me in any way he could. ABILITY 41
The LA Marathon was in March, which gave me a whole two months to train. LA was going to be more difficult than New York because David wouldn’t be able to run with me. But I’d finished one marathon, so I knew I could finish another. I blew the dust off of my NYC training schedule, bought some winter running gear, and got busy. On race weekend, I flew back out to LA and crashed at John’s place. I’d told the USC scholarship folks I would be running the marathon wearing a USC hat and a “Swim with Mike” t-shirt, and would also send in my pledges and donation checks after the race. I didn’t know if it would nab me the scholarship, but I knew it wouldn’t hurt, and it was a good program to support either way. About three miles into the race—which, it just so happened, put me right in the heart of the USC campus—I came even with a reporter in a news truck who was interviewing some of the back-of-the-pack runners. I peered at him for a minute or two, thought, Hmm, hmm, hmm, ahh, screw it, I’m going for it, then ran up beside him and yelled, “Hey, I’m Sarah! I don’t know if there are any other amputees running today, but I came all the way out here from New York to run the race on my artificial leg!” I felt a bit silly, but I needed all the exposure I could get. The newsie smiled. “Hey, Sarah, I’m Tim McLoon. That’s awesome. I’ve got to go interview these Marine guys...but if you stay to the left of the road, we’ll catch up to you.” “Okay! Right on!” Once again, the squeaky blonde onelegged wheel got the grease. Ten minutes later, Tim rolled over for a chat, and this wasn’t going to be for a package that would run on the local 11:00 news—we were live. I was nervous and hoped I could actually speak and run at least somewhat gracefully at the same time. He had me introduce myself to the viewers, then asked me why I was running. I said, “I’m raising money for USC’s ‘Swim with Mike’ scholarship fund, and we just passed the USC campus, and I’m so pumped to be running for a great cause.” Tim then asked how I lost my leg, and a few other follow-up questions and that was it; it was all done in 90 seconds. (I later found out that almost immediately after the interview, the scholarship people started getting phone calls, and the callers were all saying the same thing: “Ohmygawd, I just saw this girl on NBC talking about ‘Swim with Mike’, and she was awesome.” My on-thefly plan was a huge success.) After Tim tossed it back to the studio, he turned to me and said, “No way!” “No way, what?” I asked. “You’re from New York. So am I. And we need to exchange information, because my neighbor is a seven-year-old girl who wears a prosthetic leg. She’s going through a tough time, and I have to connect you guys. I also work on the New York City Marathon show. Have you run that one yet?” 42
Now I’m not a big believer in fate, or destiny, or whatever, but there have been a few times in my life when something happened that shook my lack of faith. It turned out that meeting Tim was one of them. Something brought us together. I finished the race in 6:15, and was shocked that in less than six months I’d shaved about 15 minutes off my time. What with the television appearance and the money I’d raised, I thought the chances of getting a scholarship looked pretty good, so much so, that almost immediately after I got back home, I booked a flight back to Cali for the big “Swim with Mike” event in April, so I could personally deliver the donation checks. That’d show them. Mom said, “You’re crazy. You’re spending all this money that you don’t have. What if they don’t give you the scholarship?” I said, “It’s a risk I have to take. Think about it: I’ve spent about $1,000 on plane fares, and I might get a $50,000 scholarship. It’s an investment. A speculative investment. And I love this school. I have to go there and swim with these people.” And I went. And they were thrilled that I was there, but they probably covered their eyes while they watched me swim, because I stunk up the joint. While I was in the water, I mostly clung to the wall as my friends John and Paul Martin swam their laps. I spent most of my time on the pool deck, where I met Mike Nyeholt, and schmoozed with Mara. At that afternoon’s barbecue, Mike Nyeholt’s former teammate Ron Orr read off the list of names of the scholarship winners. When he said “Sarah Reinertsen,” I had to keep my cool, because it wasn’t the time or place for a demonstrative Price is Right kind of display. But inside, I was jumping up and down. I wouldn’t learn if I was accepted to USC for another month, but I thought my chances were solid. I had a decent transcript from GW and a good score on my GRE, but to put me over the edge, I included a TV news piece that I’d edited with the help of my mom’s fiancé, a news reporter for one of the local New York television stations. It was a short feature that told the story of my life using old VHS footage and home videos. The application was good enough, and in early May, a couple weeks before my 22nd birthday, I was accepted into USC’s Annenberg School of Communication, and it was time to start packing up my life and moving out to the West Coast. Soon after the beginning of my first semester, it hit me that the New York City Marathon was just around the corner. I’d done LA in 6:15, which meant I’d improved over 15 minutes in only my second race, and I wondered if I could make that kind of leap again: So I went back home for a second round. Tim McLoon was working the NYC Marathon and, when he heard I was running, pitched my story to the
team that was covering the race. This wasn’t Len Berman and the local boys; this was the official national show that I’d watched back in Long Island. They bit. Tim told me they didn’t have the budget to come out to California to shoot the story, but if I flew out to New York, it would be no problem. Since it would give me the opportunity to see my family and get some work done on my prosthetics, I booked a ticket that day. And then, in a blink, it was race day. Confident that I’d break seven hours, and not wanting to be disqualified again, I started at the official race time of 10:45. I had to weave and bob my way through the crowds, and Tim did a live interview with me running on the course at Fourth Avenue, after which they ran the pre-taped interview we had done weeks earlier. I couldn’t have paid for that kind of publicity. The race was my smoothest marathon yet. Less hopskipping and more out-and-out, leg-over-leg running led to my fastest time ever. I crossed the finish line in 5:52, and I was stoked with the 36-minute improvement. (I can’t take all the credit for the bump. A brilliant prosthetist named Van Phillips had just designed a foot for distance running called the C-Foot. It was a huge technological advance, and I was lucky enough to get one of the prototypes.) Back in Los Angeles, I fell into a nice groove. I was a good little grad student, making friends, getting good grades, and pseudo-dating a guy from San Diego. (The dating thing was perfect, because a long distance semirelationship meant I’d only have to have a boyfriend on weekends, which left weekdays free for training and homework.) I was in great physical shape, probably the best shape of my life, and was looking for another big goal to conquer, because after four marathons, 26 miles was getting kind of boring. My roommate was a fellow amputee track athlete named Jami Goldman. She was training for the 2000 Paralympics, and it set my brain a-spinning. Maybe I’ll try the Paralympics again. Maybe there will be enough women for us to have a full, fair race. Maybe I’ll finally win that medal. Plus, I’ve never been to Australia, so why not? It had been a good three years since I’d done any serious sprinting, and my short distance chops were a bit rusty, so training-wise, I had to pick up where I’d left off five years before. Training for sprints and distance are two very different animals. For long runs, you can pretty much slap on your shoes and go, but for short runs, you need someone to be hands on, to run the stopwatch, to keep an eye on your form, to tell you to “pump your arms, lean forward, have faster feet, only 10 meters left, so come on!”
logical resource available to me: the USC track team. I popped over to track coach Ron Allice’s office, poked my head in the door, and said, “Hey, I’m Sarah, and I’ve been doing marathons for the last couple years, but my background is in track, and I want to try and get fast again so I can go to the Sydney Games in 2000.” He said, “Sounds good. Let’s do it.” Ron was amazing. He welcomed me as part of the team—he even got me a locker in the varsity locker room where I could leave my running leg and some shampoo. The whole thing made me feel like I was hanging out with the cool kids. It was a privilege to work out with the likes of Angela Williams, the only person in NCAA history to defend her 100m title for her entire four-year college career. I enjoyed the college track experience I didn’t even know I wanted…rah rah, Trojans! (I have to admit I didn’t wear USC track clothes, not because I lacked school spirit, but rather because dark burgundy and mustard gold don’t look particularly good on me. I’m more into blues and pinks.) I graduated in 2000 with a master’s degree in broadcast journalism, and it was a melancholy moment. I was ready to leave academia, but over the past two years, I’d become an honest-to-goodness Trojan, who loved running on that USC track. Also, what with my great professors and multitude of cool friends, I knew I’d really miss the place. A few weeks later, I went to Hartford, Connecticut for the Paralympic trials and, long story short, didn’t make the team. Yes, I was kind of bummed I wouldn’t be going to Sydney, but I picked myself up, and started looking for a job. And I got one. I got to go to Australia, not as an athlete, but as an actual, honest-to-goodness professional journalist. I landed a gig as a field producer for WeMedia, which was doing streaming Internet coverage of the 2000 Paralympic Games in Sydney. Olympic speed skater Dan Jansen was our reporter, and the he and I worked trackside in the Olympic stadium, covering six to 10 hours worth of track and field a day. We also put together some video packages that were picked up for Fox Sports Network. It was a ton of fun. It was also a ton of work—at one point, I went 28 hours straight, without a real break. I could barely speak, and Dan thought my exhausted ramblings were hilarious. I have little memory of that day, which is no surprise, because by hour 20, my brain was leaking out of my ear. I knew it was going to be a short-lived position that would conclude when the Games were done. But when my time with WeMedia ended, I was pretty bummed, especially since I had to start looking for a real job. Fortunately, a real job came looking for me. alwaystri.com
I couldn’t fly to New York to work with David, so I figured I’d take advantage of what was probably the only ABILITY 43
Photo by: Nancy Villere - CrushPhotoStudios.com
hough best known for her roles in the hit Scary Movie series and on television’s Ally McBeal, some of Regina Hall’s proudest work takes place well away from the glare of Hollywood. An avid volunteer for the care of senior citizens and an advocate for more public awareness of scleroderma, Hall, along with her mother Ruby, sat down with ABILITY’s Chet Cooper to discuss the rare skin condition and how it has hit her family close to home. Chet Cooper: Regina, when we were talking earlier, you’d mentioned that your mom had been diagnosed with scleroderma. Can you tell me a little bit about that experience for the two of you? Regina Hall: My mom was diagnosed with scleroderma about six years ago. It’s a condition that affects the skin and some other ABILITY 45
Art by Kristian Olson, kristianolson.com
organs, and can take several forms. The type my mom has is called CREST.
spend too much time outside when it’s cold because of her condition.
Cooper: You do both have great smiles.
Cooper: Ruby, I know you’re technically retired, but also that you still do some substitute teaching out in DC. How is that experience? There are some tough neighborhoods out there.
Ruby Hall: (laughs) Each letter stands for something. Let’s see if I can remember all of them. C-calcinosis, RRaynaud’s, E-esophageal dysfunction, S-sclerodactyly and T-telangectasias. Regina: Fortunately my mother has an amazing doctor at Johns Hopkins. I’ve been learning a lot about the condition, and I know that it predominantly affects women. There’s not a lot of funding for research and treatment of scleroderma, unfortunately. Cooper: It’s fairly rare, isn’t it? Regina: It is. But you know, it’s still more common than people think. In the early stages of the condition, it looks like lupus. It can cause a hardness of the skin, blotching, development of red spots. In the most severe cases, you develop acid reflux because your esophagus begins to harden and swell, so breathing eventually becomes difficult. Fortunately, my mother’s case isn’t that intense, so that’s a blessing. But she does have Raynaud’s, so when she’s cold, she loses circulation in her hands and feet. They turn white. So she doesn’t really do grocery stores for long periods of time anymore. Cooper: Because it’s difficult to stand or walk for long periods of time? Regina: No, because she’s affected by the colder temperatures at the grocery store. It’s really important for her to keep her hands and feet warm. Even when she’s just out driving, she wears warm mittens or driving gloves. She lives in Washington, DC, but tries not to 46
Ruby: Yeah, but I was born in one of the tough neighborhoods. So when I was teaching, I came into my elementary schools as if they were any other elementary school. I knew all the kids and they loved me, I loved them. All my kids finished high school. Nobody got killed or anything like that. Cooper: How is your health otherwise? The two of you had mentioned something about a stroke earlier. Regina: Yes. My father died in 1994 of a massive stroke. My mother had a mild stroke in February, but she’s been doing wonderfully. She does rehab three days a week and it’s really been great, too, helping her strengthen her left side. She’s been stair-climbing, she’s been walking. So it’s been good. Ruby: Yeah, I feel fine. But when I first had my stroke, it was the night of a big blizzard in Washington. It was so bad, the medics couldn’t even drive up to the house. They had to walk up. The nurse told me my pressure was 120 over 150 and that I didn’t have to go to the hospital. So I didn’t go, but that Thursday morning I woke up and I was feeling so bad. By Friday morning, I couldn’t hardly make it to the kitchen to get any food. So I decided maybe I should go to the hospital. Regina: I read an amazing book for anyone whose family member has suffered a stroke. It’s called My Stroke of Insight, and is about a woman, a brain scientist, who
had a stroke on her left side, leaving her right side undamaged. It’s a really great book for understanding strokes and what happens. Cooper: I read that book and I’ve talked to her. Regina: Wow! So you know, she wrote that she was extremely cognizant of the whole experience, even though her language center wasn’t able to recall language. She still knew what was going on. And the fact that she was using herself as a case study is the best part. Pretty amazing. Cooper: Yes. Kirk Douglas wrote a book, called My Stroke of Luck, about how he looked at life and therapy after his stroke. He said that at age 83, he finally realized life was about helping others, about giving back. Regina: That’s the way to be. Just last year, I started volunteering at a convalescent home in Sherman Oaks, twice a week. A lot of those patients, the seniors, had had strokes. I guess I had just assumed that these people wouldn’t or couldn’t understand me. But I would go through trivia and current events with them. Some of the people would answer my questions even when I wasn’t sure they’d be able to talk at all. And I’d realize, “ Oh, my gosh, they hear! They’re totally cognizant.” It’s amazing how the brain works to survive and recreate. Ruby: My therapy and my diet have really been helping, in my case. My daughter has me on a very strict diet. Today was the first day I had coffee. She’s got me on a lot of carrot juice. It doesn’t have the best taste, but I swallow it. Regina: When my mom was diagnosed, I didn’t know much about the condition. But Dana Delaney, who is an actress and now a friend of mine, put me in touch with Bob Saget. Bob had made a television movie about scleroderma years ago because his sister had died from it. That was back when they didn’t even know what it was. Anyway, Bob had a group called the Scleroderma Research Foundation, so I donated to that and my mother even went to the doctor Bob had suggested, who happened to be over at Johns Hopkins. He’s been great. Cooper: How long have you been connected with Bob? Regina: Oh, I met Bob about six years ago. He actually called me once I’d spoken to Dana. He called me about my mother, and ever since then he’s kept me abreast of everything going on with the Scleroderma Research Foundation. Cooper: Do you do any work with them? Regina: Sure. Every year, they have a big fundraiser, and the biggest thing for them is raising awareness of the disease. A lot of people have still not heard of scleroderma. So it’s really all about raising the money ABILITY 47
(l to r): Chris Rock, Regina Hall and Martin Lawrence starring in Death at a Funeral
to continue research. As of now, there is no cure, so all any of us can do is find ways to treat it and slow its progression. Doctors don’t know what causes it, so they’re still trying to figure out whether it’s something external or genetic. Truthfully, most people only hear about the kind of scleroderma that hardens your organs or turns your skin to stone until you just die. You know who else had it? Jason Alexander from Seinfeld—his sister had it. Her esophagus eroded or hardened. I believe she has passed away. So when my mother was diagnosed, it just sounded like a death sentence. But there are treatments that make it better. It doesn’t have to be a death sentence.
“scary.” And you are in all of these Scary Movie films. It seems like most of the roles you’ve done that I know about have been comedies. How did you get involved in that? Regina: You know, it just happened. I have done some dramatic works, but I guess the bigger movies have been comedies. I don’t necessarily think of them as comedies or dramas, specifically. I guess I just look at the tone of the script, the character, and just kind of go from there. Once you do a thing in Hollywood that becomes popular, people want to see you do that more and more. So it kind of creates itself, I think. Cooper: And Jamie Kennedy—?
Ruby: It was scary, though. Regina: Yeah, and the thing is, I think the biggest hurdle in the beginning was that she was really not herself. Her energy was completely gone, she was really tired, always sleeping. Now she’s up all day. I can’t stop her! She’s running upstairs now! (laughter) Her energy is really coming back. She’s showing off. I have to make sure she’s not hanging out at the club or roller skating! Cooper: You mention your mother’s diagnosis being
Regina: We slept together several times. No. (laughter) I did not know Jamie before. I met him at the audition. I met him as B-Rad at the screen test. He was very nice. Cooper: I slept with him too. He was playingB-rad? Regina: (laughs) Yeah, because we had to do an actual screen test. He was in character. And I liked him a lot. He’s still a good friend. He’s a nice guy. I used to watch his show all the time, the disguises—he fooled me all
Hall, in a Scary Movie.
the time. I loved the B-Rad character on the show, which is why I guess it became a movie. Cooper: And now you’re in a pretty big film called Death at a Funeral?
lot of joy that I come and spend time with them. There’s an all-purpose room where we all do games and trivia. They’re pretty great. They love it when I bring my dog in, too. Cooper: Does the senior center need you to have a registered therapy dog?
Regina: Yes. I’m excited. Cooper: What role do you play? The dead person? Regina: Um, um— (laughs) No, I’m Chris Rock’s wife. Cooper: You’re working with a pretty large cast. Regina: Yeah, it’s a great ensemble, and is a remake of a very funny British film that Frank Oz directed. Cooper: And you’re still finding time to do some volunteering in the middle of all of this? Regina: Yeah, I still work with seniors about two days a week. I think there should be a lot of respect paid to the lives they’ve lived and the lessons they’ve learned. I learn something from them all of the time. One of the nicest things about volunteer work is that the people I help don’t know I’m an actress at all. They just have a
Regina: Well, they just have to make sure the dog has had his shots, which mine has. There’s one woman who is blind, doesn’t speak any English, loves my dog. And it’s great for me, too, because it means I don’t have to give him so much attention when I come home. (laughs) Cooper: Do you do any other kinds of volunteering? Regina: I mostly work with seniors, but two weeks ago I helped with The Make-a-Wish Foundation, which is all for kids. I was in a booth where the kids come up and throw a ball and knock down little characters. It was fun. For more information on scleroderma, see page 50
(l to r): Ruby Hall, daughter Regina and Chet Cooper. Chet shows off his ABILITY neck tattoo.
chronic autoimmune disease, scleroderma is characterized by fibrosis (or hardening), vascular alterations, and autoantibodies. There are two major forms of the condition: Limited cutaneous scleroderma (or morphea) and Diffuse cutaneous scleroderma. Limited cutaneous scleroderma mainly affects the hands, arms and face, although pulmonary hypertension is a frequent characteristic. Diffuse cutaneous scleroderma (or systemic sclerosis) is a rapidly progressing form and affects a large area of the skin, as well as one or more internal organs— frequently the kidneys, esophagus, heart and lungs. Diffuse cutaneous scleroderma can be fatal. There are no treatments for scleroderma itself, but individual organ system complications are treated. Prognosis is good for limited cutaneous scleroderma. Prognosis is worse for diffuse cutaneous disease, particularly for older patients, and for males. Death occurs most often from pulmonary, heart and kidney complications. In cases of diffuse cutaneous disease, odds of five-year survival are 70%, and odds of ten-year survival are 55%. Causes are unknown. Scleroderma runs in families, though genes have not specifically been identified. It affects the small blood vessels, known as arterioles, in all organs. First, the disease kills the endothelial cells of the arteriole, along with smooth muscle cells, by a process of apoptosis. Those cells are replaced by collagen and other fibrous material. Inflammatory cells, particularly CD4+ helper T cells, infiltrate the arteriole, and cause further damage. Many of the inflammatory and destructive protein signals have been identified, and are potential targets for drugs that could interrupt the process.
DIAGNOSIS Typical scleroderma is classically defined as symmetrical skin thickening, with about 90% of cases also presenting Raynaud’s phenomenon, nail-fold capillary changes, and anti-nuclear antibodies. Patients may or may not experience systemic organ involvement. Atypical scleroderma may show any variation of these changes without skin changes or with finger swelling only. Additional symptoms of scleroderma typically present themselves within two years of Raynaud’s phenomenon. Laboratory testing can show anti-topoisomerase antibodies (causing a diffuse systemic form), or anti-centromere antibodies (causing a limited systemic form, and the CREST syndrome). Other autoantibodies can be seen, such as anti-U3 or anti-RNA polymerase.
SEVERE COMPLICATIONS • Heart — Untreated high blood pressure strains the heart; irregular heart rhythm and enlargement of heart lead to organ failure. • Kidney — Blood vessel damage causes blood pressure to rise, which untreated, will result in brain swelling, headaches, retinal damage and seizures. • Lung — Two-thirds of all patients suffer from respiratory problems such as shortness of breath, coughing, difficulty breathing, alveolitis (inflammation of lung air sacs), pneumonia and cancer. • Digestive — Esophagus damage can make it difficult to swallow food, and acid reflux is common. A sluggish intestine may cause pain & bloating; undigested food can result in diarrhea, weight loss and anemia. • Skin & Joints — Carpal tunnel syndrome is common, as is muscle weakness, joint pain & stiffness.
TREATMENT There is no direct cure for scleroderma. Because the exact cause is unknown, any treatment is patient-specific and aimed at ameliorating symptoms of the disease. For example, patients who experience Raynaud’s phenomenon may be treated with agents to increase blood flow to the fingers, including nifedipine, amlodipine, diltiazem, felodipine, or nicardipine.
Scleroderma is characterized by the appearance of circumscribed or diffuse, hard, smooth, ivory-colored areas that are immobile, and which give the appearance of hidebound skin. The condition occurs in both localized and systemic forms:
Because scleroderma is an autoimmune disease, one of the major pillars of treatment involves the use of immunosuppressive agents. These drugs include methotrexate, cyclophosphamide, azathioprine, and mycophenolate.
Individuals with morphea or limited scleroderma have a relatively positive prognosis. They will usually succumb to another disease, rather than to scleroderma. Those with very widespread skin and organ involvement (systemic) have a negative prognosis. More women have scleroderma, but the disease kills more men. Following diagnosis, two-thirds of patients live at least 11 years. The higher the patient’s age at diagnosis, the more likely they are to die from the disease. by Thomas Chappell, MD
Scleroderma is found among all races worldwide, but women are four times more likely to develop it than men. In the United States, approximately one person in 1,000 is affected. Children rarely suffer the systemic type of the disease, but localized scleroderma is common. Most adults are diagnosed between ages 30 and 50. The disease has high rates among the native American Choctaw tribe and African-American females.
or nearly twenty years, this publication has championed the emphasis of ability both inside and outside of the workplace. Now, with the ABILITY Magazine Best Practices Award, we are pleased to shed light on corporations who share in our core philosophy. This award is designed to single out and celebrate those business practices that have a high level of commitment to inclusion and ingenuity, demonstrate positive results in their efforts, and possess the potential to inspire other organizations. It is through such practices that an organization becomes a leader in its market, improves employee morale and strengthens community relations. This issue, we are proud to recognize Proctor & Gamble and Microsoft as recipients of the ABILITY Magazine Best Practices Award.
PROCTER & GAMBLE Through its Cincinnatti-based People with Disabilities Leadership Network, Procter & Gamble’s (P&G) spirit of inclusion and involvement sets an example for businesses large and small by tackling issues of accommodation and support that are vital to the full success of any business. P&G’s admirable focus on actively recruiting employees with disabilities and on identifying and working to meet the needs of each of its many diverse employees have been keys to its success as a multinational corporation. Additionally, as a proud partner of the 2010 US Paralympic Team, P&G defrayed the cost of travel and accommodations for every mother of an US Paralympic athlete, allowing some of America’s most gifted and tenacious competitors to bask in success alongside the women who raised them for greatness. The effort was just one element of P&G’s ‘Thank You, Mom’ program, which also donated one US dollar to Team USA for each mother thanked at thankyoumom.com.
MICROSOFT Since its inception in 1975, Microsoft has established itself as a pioneering force in computer technology and has steadily grown to become an integral part of how productivity is accomplished at homes and businesses across the globe. Perhaps less well-known, however, is Microsoft’s focused dedication to the integration of accessibility in its product planning, product development, research, and program testing. Microsoft truly recognizes that people with disabilities, as one of the largest minority groups on the planet, are a powerful resource in any workspace and are integral to the success of any corporation. At Microsoft, programs and products aren’t merely retrofitted to accommodate people with vision, language, or hearing impairments, they’re designed with inclusion in mind from the very beginning. Accessibility for all of its users and clients remains a key component of Microsoft’s Trustworthy Computing initiative, which focuses on integrity and responsibility in the company’s business practices and product designs. Microsoft’s groundbreaking, innovative work in the areas of speech technology, natural language processing, and adaptive systems and interaction, as well as in a host of other accommodations, have kept the corporation at the cutting edge of technology while helping each client realize his maximum potential. With its unique blend of ingenuity, practicality, and inclusiveness, Microsoft continues to give new meaning to the term “user-friendly.” abilitymagazine.com
As the fourth largest company in the United States by market capitalization, P&G continues to prove that its most formidable strengths lie in attention to detail and in creating the best possible environment for its body of talent. ABILITY 51
hen her guest role on Fox’s Family Guy drew criticism from former Alaska governor Sarah Palin, actress and activist Andrea Friedman found herself the focus of some unexpected publicity. But Friedman’s not about to let one negative review get her down. At her Santa Monica office, Friedman, along with her father Hal, sat down with ABILITY’s Chet Cooper to discuss the Family Guy fallout, living with Down’s Syndrome, and the impact of the “R” word.
Chet Cooper: This is a great view of Los Angeles you’ve got. It doesn’t even seem like the city. What kind of work do you do here? Andrea Friedman: Yes, we are looking at the Santa Monica Hills. I work in accounting downstairs. I mostly send out bills and go around and bring things to lawyers. Cooper: And you also work for something called Pathway? At UCLA? Andrea: Yeah, whenever they need an assistant teacher, I’m on the board.
thanks to an episode of Family Guy that you did. When did this all start to become a news item? Andrea: I think that Family Guy episode came out on February 14th, on Valentine’s Day. That was the first time I’d ever done a voiceover. But, you know, I’ve been out here 34 years and it’s the biggest news I’ve gotten, I guess. Cooper: And now you’re right in the middle of some controversy with Sarah Palin. Do you remember what your line was in the show that got so much attention? Andrea: Yeah. It was supposed to be a joke.
Hal Friedman: Pathway has been great. It’s a two-year residential program for people who could not otherwise go to college. The students are taught how to live independently, but they also take whatever kinds of classes they’re capable of managing. There are some students there who have autism but who have very high IQs.
Cooper: Do you remember what your character had said?
Andrea: The classes help them lead independent lives.
Andrea: No. But I did an interview with The New York Times yesterday.
Hal: And it’s just another way for people with challenges to get an education. It’s been quite successful. It’s so successful now that the students and their parents have asked for a third year, and maybe it’ll eventually be a four-year program like most colleges. Andrea: Whenever they need me, they call me. Right now we’re doing fundraising for scholarships. Hal: We know of one young man there who—I think because he has some type of cerebral palsy—had difficulty tying his shoes, buttoning shirts, and things like that. He is an Orthodox Jew, and the school gave him a roommate who is a Muslim from Iran with autism. The autistic roommate would not let anyone touch him, hated to be touched. The young man with cerebral palsy is a very happy, outgoing guy, and eventually his roommate started to help him with his shoes and shirts! They became very good friends. The parents of the Jewish boy called the parents of the Muslim boy to tell them they appreciated the relationship that had formed. And the parents of the Muslim boy said to the parents of the Jewish boy, “It’s for us to thank you, because our son has never been able to touch anybody, and now he’s getting over that.” It was pretty amazing. Cooper: That’s an incredible story. We might have to look into that one. Hal: Sometimes I think people stir up differences for their own purposes. There’s more that makes us the same than different.
Andrea: I’d said, “My father is an accountant, and my mother is governor of Alaska.” Sarah Palin said that was insensitive and cruel, so— Cooper: Have you tried talking to Governor Sarah Palin?
Cooper: They wanted to see what your take on it was? Andrea: Right. I mean, it was only a joke, and it would be nice if she would just—to me it was a joke, to her it wasn’t. Cooper: You didn’t expect it to get this kind of feedback? Andrea: No, not at all. I didn’t realize what was happening. It’s a job. Cooper: There’s also been a lot of discussion lately about use of “the R-word.” What are your feelings about that? Andrea: “Retarded”? That R-word? I don’t really like it at all. It really affected me in many ways, because I’ve been teased a lot. I was teased with that in elementary school, in high school, and I didn’t like it. I was going to stand up for myself, but I didn’t have the courage. So I’d say something like, “Leave me alone or my sister will come after you.” (laughs) Cooper: (laughs) Well, there’s been a lot of discussion about that word lately, and about how hurtful it can be. You’re familiar with what happened with Rahm Emanuel and Rush Limbaugh? Andrea: Well, I’m not into that controversy part of it. I’m not into that. Cooper: Do you know who Rush Limbaugh is? Andrea: No. Never heard of him.
Cooper: Andrea, you’ve been in the news a bit lately, ABILITY 53
Andrea Friedman sharing her views with a radio show concerning Gov. Sarah Palin and the Family Guy.
Cooper: Have you been able to get in touch with Sarah Palin at all and share your views? Andrea: Not really. She never called to find out what I think, so I can’t really give her any information or my thoughts. And I’ve never met her before, so I don’t know what she’s like. Cooper: I think it would be a good conversation. I would like to see if we could— Andrea: I don’t know how she would react when she sees me. Attack me again? Cooper: (laughs) I doubt it. I think you guys would probably get along. I think most people who get into the political arena tend to speak out on certain things— Andrea: I’m not in the political arena.
what kind of conversation you might have if you told her that your work on Family Guy was meant to be a joke, as you’d said. Andrea: Yeah, it was a joke. Either way, whatever she thinks, it’s okay. I’d like to meet her if I had the chance, and I’d like to meet Trig, too, and hold him. Cooper: Well, I think anybody would enjoy meeting you. What other kinds of acting work are you looking to do? Is there anything in the near future? Andrea: I don’t know. I always get one show each year, but that’s about it. Cooper: Maybe that is about to change. You’re getting some notoriety again. Andrea: I’m all over the place now! From The New York Times to PerezHilton.com to The Insider XD.
Cooper: But she definitely is. That’s my point. Andrea: If she’s nice, then okay. But sometimes it looks like she’s using her son Trig as a prop. And that’s not right. My mom raised me as someone with a normal, independent life, like most people have, and I’ve been around and happy for 39 years, going on 40. I feel like sometimes Sarah Palin wants to get more votes by bringing her son out. She’s dragging Trig around as something to be used, and that’s not right to me. It’s totally not. To me, it’s downright wrong. Cooper: I would be curious to see what she would say to you. I know that in respect to use of the “R-word,” she had called for Rahm Emanuel to lose his job, but she was okay with Rush Limbaugh using it because she thought it was satirical. So it’d be interesting to hear 54
Cooper: And now to be back in ABILITY Magazine after all these years! You were on the cover of our second issue. That’s how long ago that was. Andrea: I still have it at my parents’ house! When this new one comes out, can I have lots of copies? I’d like to have one for my grandmother, and I have cousins all over the place. Cooper: Sure. Andrea: Oh, and I forgot to mention that I would also like to meet President Obama one day. Cooper: (laughs) If you guys hang out let us know. ndss.org
he Equal Employment Opportunity Commission (EEOC) enforces federal laws prohibiting discrimination in employment. The following are recent cases brought about from the EEOC.
OLSTEN STAFFING SERVICES TO PAY $75,000 TO SETTLE EEOC DISABILITY DISCRIMINATION SUIT Nationwide Temp Agency Refused to Refer Deaf Worker in Wisconsin For Food Production Job Because of His Disability, Agency Charged Olsten Staffing Services Corp., a nationwide temporary employment agency, will pay $75,000 to settle a disability discrimination suit filed by the EEOC. In its suit, the EEOC charged that Olsten, based in Melville, NY, violated the Americans with Disabilities Act (ADA) by refusing to refer a deaf job applicant for temporary employment as a production worker at Main Street Ingredients, a La Crosse, Wisconsin food products manufacturer. The EEOC said that, on two occasions, a staffing specialist at Olsten’s La Crosse office decided not to refer the applicant to Main Street because he is deaf, despite his meeting all the actual qualifications for the job. EEOC Chicago District Director John Rowe, who managed the federal agency’s pre-suit investigation, said that emails obtained by the EEOC showed that Olsten’s staffing specialist had flagged the applicant’s disability as a “concern.” Rowe said that when the staffing specialist was later asked by the applicant why he did not get the job, the specialist falsely attributed the decision to concerns expressed by Main Street, when in fact Main Street had not expressed such concerns. Evidence obtained by the EEOC indicated that hearing ability was not a requirement of the food production job at Main Street; in fact, according to Rowe, workplace noise required a number of employees there 56
to wear ear protection that prevented them from hearing while working. The ADA requires that temporary employment agencies evaluate job applicants with disabilities on the basis of their ability to perform, with or without reasonable accommodation, the essential functions of the jobs for which they are being considered. The ADA prohibits such agencies from declining to refer a qualified individual because of his disability. Moreover, if an agency has reason to believe that one of its clients is discriminating against one of the agency’s temporary employees in any phase of the employment relationship (including hiring and referral), the agency has an affirmative obligation under the law to take reasonable steps within its control to remedy that discrimination. “This case is a reminder that employment agencies, no less than any other employer, have important obligations under the ADA,” said John Hendrickson, the EEOC regional attorney for the Chicago District, which includes Wisconsin. “Decisions made by agencies concerning whether to refer a job applicant must be based on qualifications, period—not on the basis of a disability.” The EEOC’s lawsuit was filed on September 29, 2008, in the US District Court for the Western District of Wisconsin. The case was resolved by a two-year consent decree which was entered today by US Magistrate Judge Stephen L. Crocker, who presided over the case. In addition to requiring Olsten to pay lost wages of $5,000 and damages of $70,000, the decree contains an injunction prohibiting Olsten’s La Crosse office from engaging in any further discrimination on the basis of disability. The decree also requires that Olsten provide training to its employees concerning the ADA and report any further complaints of discrimination to the EEOC for the next two years. The government’s litigation effort was led by EEOC
Trial Attorneys Justin Mulaire and Laurie Elkin and EEOC Supervisory Trial Attorney Gregory Gochanour.
LARGE ARIZONA BOTTLING COMPANY SETTLES EEOC DISABILITY DISCRIMINATION SUIT Kalil Unlawfully Fired Employee Because of Diabetes, Federal Agency Charged Kalil Bottling Co., a large Arizona soft drink bottling and distribution company, has agreed to settle a disability discrimination lawsuit filed by the EEOC. The suit, filed in US District Court for the District of Arizona in Tucson, charged that Kalil violated federal law when it fired Gerald Nez, who has diabetes. As a merchandiser, Nez was required to drive his own personal compact pickup truck to complete his duties. The suit further alleged that despite at least four months of flawless work and an impeccable driving record, Kalil required that Nez pass a medical exam. When the medical exam revealed that he had diabetes and was using insulin, Kalil fired him for that reason alone. For the last 30 years, Kalil has had a policy requiring all employees who drive any motor vehicles as part of their employment, even their own vehicles, to pass a federal Department of Transportation (DOT) medical exam designed for people seeking a commercial driver’s license (CDL) required for trucks over 10,000 pounds. Nez did not need a CDL to fulfill his job at Kalil, the EEOC argued. “The DOT’s exam automatically prohibits people who use insulin from obtaining CDLs,” said Mary Jo O’Neill, the EEOC’s regional attorney in Phoenix. “That may be perfectly fine when the job requires a CDL, but Nez never needed a CDL to drive his own pickup for Kalil. Under the ADA, this policy is an unlawful qualification standard that tends to screen out individuals with disabilities, including people with diabetes.” Firing an employee because of a disability violates Title I of the ADA, which prohibits employers from discriminating against qualified individuals with disabilities in employment. Under the law, employers may not try to get around the prohibitions against disability discrimination by relying on irrelevant qualification standards that screen out people with diabetes or any other disability. Nez has since passed away. Pursuant to the consent decree settling the suit, the company will pay $33,000 to Nez’s widow, conduct anti-discrimination training, and eliminate its policy of automatically excluding insulinusing people with diabetes from jobs involving operating motor vehicles. “The key problem in this case is that insulin-requiring diabetes was an automatic exclusion from employment at Kalil,” said O’Neill. “The company failed to do an indi-
vidualized assessment of Mr. Nez to see if, in fact, his diabetic condition made him a safety hazard. Millions of Americans use insulin and millions drive in their own cars and are perfectly safe drivers.” “While Kalil initially may have had good intentions to ensure greater driver safety, it used a shotgun approach that excluded perfectly qualified people with disabilities from employment —people like Mr. Nez,” said EEOC Trial Attorney Diana Chen. “At the time Kalil fired him, it had absolutely no evidence that his diabetes posed any risk on the road. Companies must be mindful that policies they put in place don’t violate anti-discrimination laws.” EEOC Acting District Director Julie Bowman added, “We are pleased that Kalil decided to change its policy. This outcome is a win-win. Kalil now has access to a larger pool of qualified applicants and people with disabilities have more opportunities in the job market.” Headquartered in Tucson, Ariz., Kalil supplies popular soft drinks like Snapple, Gatorade and Monster Energy to consumers in Arizona, New Mexico, Colorado and Texas.
VALLEY ISLE MOTORS TO PAY $32,500 FOR REFUSING TO HIRE PERSON WITH PERCEIVED DISABILITY Car Dealership Dropped Job Offer After Drug Test Results Revealed Use of Prescription Meds The EEOC announced the settlement of a lawsuit filed against Valley Isle Motors Ltd, a Maui-based car dealership, resulting in a $32,500 payment to a job applicant and other relief to remedy alleged disability discrimination. In its lawsuit, the EEOC asserted that the car dealership reneged on an offer to hire a job applicant as a salesperson only after a urine test revealed he was taking prescribed medication. Valley Isle Motors then erroneously perceived the applicant as too disabled to do the job despite normal medical test results and medical authorization to the contrary, the EEOC said. The EEOC argued that the conduct was in direct violation of the ADA. The EEOC originally filed the lawsuit in February 2009 on the applicant’s behalf after first attempting to reach a pre-litigation settlement. The parties entered into a three-year consent decree, approved yesterday by the US District Court of Hawaii. The consent decree requires that Valley Isle Motors implement an internal policy, procedures and staff training to safeguard against disability discrimination. The car dealership must also submit annual reports to the EEOC to track future complaints of disability bias and requests for disability-related accommodations during the hiring process. ABILITY 57
“Employers cannot make assumptions about a prospective employee’s ability to work,” said Anna Y. Park, regional attorney for the EEOC’s Los Angeles District Office. “The ADA expressly prohibits that stereotypes of this nature weigh into the decision to hire or deny hire to an individual.” Timothy Riera, director of the EEOC’s Honolulu Local Office, added, “Employers should heed the lesson learned by Valley Isle Motors and be mindful to judge a candidate by his or her qualifications, not by some illinformed presumption. Communication with prospective employees is the key in determining whether one’s actual or perceived condition will interfere with work. Businesses should take advantage of appropriate training opportunities that are available to learn how to appropriately engage in that interactive process.”
The EEOC St. Louis District Office is responsible for processing charges of discrimination, administrative enforcement and the conduct of agency litigation in Kansas, Missouri, Nebraska, Oklahoma and southern Illinois, with area offices in Kansas City and Oklahoma City.
ST. LOUIS CONSTRUCTION COMPANY SETTLES DISABILITY DISCRIMINATION SUIT WITH EEOC
$50,000 CONSENT DECREE RESOLVES EEOC DISABILITY DISCRIMINATION LAWSUIT AGAINST DIRECT WINES
A&A Contracting Fired Worker Because of Health History
Beverage Distributor Unlawfully Fired Employees Who Needed Medical Leave
A&A Contracting, a St. Louis construction company, has agreed to settle a disability discrimination lawsuit filed by the EEOC. The suit, which was filed last fall, charged that the company violated federal law by firing one of its permanent construction workers because it regarded him as disabled due to his history of liver and kidney problems, including cancer.
Federal District Judge John W. Darrah has signed a consent decree under which Direct Wines, Inc., formerly known as Beverage Solutions, Inc., a Lake Forest, IL beverage distribution company, will pay $50,000 to end a disability discrimination lawsuit filed by the EEOC.
Title I of the ADA prohibits employers from discriminating against employees and applicants who are disabled, have a record of disability, or who are regarded as disabled. At the time of his termination, the EEOC said, Rick Wells was in good health and had been cleared to work by his doctor, but A&A Contracting became aware of his health history when he applied for the company’s health insurance coverage. The settlement agreement, which was filed in the US District Court for the Eastern District of Missouri, provides for payment of $17,000 in lost wages and compensatory damages to Mr. Wells, implementation of a comprehensive anti-discrimination policy, training of all management employees, and designation of a human resources professional to consult and participate in HR-related matters. “While it was important to the EEOC that Mr. Wells be compensated for his lost wages and for the humiliation of being fired for a perceived disability, we are equally pleased that this settlement means that another St. Louis employer will be taking important steps to prevent any similar problems in the future,” said Barbara A. Seely, Regional Attorney of the EEOC’s St. Louis District Office. James R. Neely, District Director of the EEOC’s St. 58
Louis District Office, said, “Even small employers need to keep themselves educated and informed of the law’s requirements. At the time Mr. Wells was fired, A&A Contracting had approximately 20-25 employees. Any business with that size work force needs to make sure that it has clear, effective anti-discrimination policies and that it provides thorough, comprehensive anti-discrimination training to its managers and employees on a regular basis.”
Direct Wines operates home delivery membership clubs such as Beer Across America and International Wine Club. The EEOC charged in the suit that the company violated the ADA by failing to accommodate Pamela Stokes and a class of employees with disabilities by terminating their employment because they needed medical leave. The ADA prohibits employment discrimination against people with disabilities and requires that employers provide reasonable accommodations to employees, including leaves of absence, unless doing so would cause an undue hardship to the employer. According to EEOC Chicago District Director John Rowe, who supervised the federal agency’s administrative investigation of the matter, Beverage Solutions had a policy that provided that employees could only take leave between February 15 and May 15 or between July 15 and October 15, when Beverage Solutions claimed its business was slower. When Stokes requested six to eight weeks of medical leave beginning on September 20, 2006 so that she could have heart surgery, Rowe said, Beverage Solutions denied her leave request and told her that by taking leave she would be effectively resigning. Stokes underwent surgery and was released to return to work on November 20, 2006. She then contacted Beverage Solutions about coming back, but was refused.
The EEOC filed the lawsuit on June 25, 2009, in the US District Court for the Northern District of Illinois, Eastern Division. The case was assigned to Judge Darrah. The judge signed the consent decree February 26, 2010, and it was received by the EEOC.
Akeena Solar, a Los Gatos California-based solar power company will pay $30,000 to a payroll and accounts technician and will implement preventative measures to settle a federal disability discrimination lawsuit.
Under the terms of the consent decree, Direct Wines will pay $50,000 to Stokes and one other employee who was terminated for needing medical leave. The decree also requires that Direct Wines adopt and distribute a policy against disability discrimination and revise its leave policies to provide reasonable accommodations to employees with disabilities. In addition, the two-year decree enjoins Direct Wines from engaging in further disability discrimination or retaliation, requires that it provide annual training to its employees regarding disability discrimination and mandates that it submit periodic reports to the EEOC regarding any such complaints.
This resolved the EEOC’s suit alleging that Gladys Tellez, a 44-year-old Latina hired to be a payroll and accounts technician on November 13, 2006, was fired by Akeena Solar within hours of her first day at work, after her supervisor discovered that her left arm was paralyzed. The EEOC’s investigation determined that Tellez was fully qualified and capable of performing the essential functions of the position despite her disability.
“We’re pleased that Direct Wines agreed to resolve this lawsuit without protracted litigation,” said John Hendrickson, the EEOC’s regional attorney in Chicago. “Early resolutions like this one have real down-to-earth benefits. Employers aren’t spending money that could be used to grow business on suiting up lawyers to do battle. Victims of discrimination are more quickly made whole and can move on with careers. Current and future workers are—immediately and for the long term—assured their rights under federal law will be protected and respected. From our perspective at the EEOC, these are all entries on the positive side of the ledger, not only for all the parties, but for the taxpayers as well.” EEOC trial attorney Ann Henry and Supervisory Trial Attorney Diane Smason were responsible for the conduct of the litigation. “This case should remind employers that inflexible leave policies may spell trouble under the ADA,” Henry said. “Even if an employee with a disability may not be eligible for leave under the Family Medical Leave Act, the ADA still may compel an exception to a leave policy as a reasonable accommodation. So, as with any other reasonable accommodation issue, this is not an area for knee-jerk decision making.” The EEOC Chicago District Office is responsible for processing charges of discrimination, administrative enforcement, and the conduct of agency litigation in Illinois, Wisconsin, Minnesota, Iowa, and North and South Dakota, with area offices in Milwaukee and Minneapolis.
AKEENA SOLAR SETTLES DISABILITY DISCRIMINATION SUIT EEOC Obtains $30,000 for Woman With Paralyzed Arm Fired Within Hours of Starting Work
Title I of the ADA prohibits employment discrimination against people with disabilities in the private sector and state and local governments. After a neutral investigation conducted by EEOC Investigator Juan Vaca and first attempting to reach a voluntary settlement through conciliation, the EEOC filed the suit in US District Court for the Northern District of California. Under the terms of the consent decree, Akeena Solar will pay Tellez $30,000 in damages, post a notice in the workplace concerning the company’s commitment to complying with the ADA, institute annual training on preventing disability discrimination to staff involved in hiring and recruitment, and report to the EEOC any disability discrimination complaints that arise for the next three years. “All too frequently the mainstream public, including employers, perceives people with disabilities through a filter of myths and stereotypes, instead of assessing each person on his or her own terms,” said EEOC Regional Attorney William Tamayo. “In Ms. Tellez’s case, she was not even given a full day to prove herself. We hope this resolution will encourage employers to give persons with disabilities a fair shot at establishing their individual worth and value at work.” “A truly green business will make the most of human resources as well as energy sources,” said EEOC San Francisco District Director Michael Baldonado. “This settlement benefits Akeena Solar’s workforce by ensuring that management is educated to recognize and prevent disability bias.” According to its website, akeena.net, Akeena Solar is one of the leading designers and integrators of solar power photovoltaic systems for residential and commercial customers in California, New York, New Jersey and Connecticut. eeoc.gov
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1. This Department of Transportation has finally settled a lawsuit over access to sidewalks by people with disabilities 5. "I Know a Woman Like that" author (mother and daughter) last name 10. Author of "A Country Called Amreeka" ____ Malek 12. Lifted weights (2 words) 14. Was first in a race 15. Vie for office 16. Memo start 17. Oscar winning actress who has supported Breast Cancer Care, Nicole ____ 18. "Big Toe's" front man, Mark ___, who was born with no arms 21. Riches 22. Symbol whose value is very overrated 23. Persona ___ grata 26. One of the top female wheelchair racers in the world (2 words) 29. What? 31. ___athlon 32. TV show where RJ Mitte stars playing a boy with cerebral palsy (2 words) 37. "What's up __" 38. ___ Leppard (band) 40. Concord locale 41. This Public Safety Communications Center has become the first in the nation to successfully receive text messages sent directly to 9-1-1 46. Being replaced by the DVD 48. Gambling mecca, for short 49. Bachelor's last words! 50. Stan who created Spider-Man 51. Scott McNeice and David Bailey were top disabled performers in this challenging sport
1. He has been appointed the Special Raporteur on Disability of the Commission for Social development, Shuaib ____ 2. Rested (2 words) 3. Tourer 4. Person, place or thing 6. Assistance 7. Powerful characteristics 8. 1980's White House name 9. Super Mario Bros. enemy 11. "Fantasy Island" prop 12. Bad joke 13. Huffiness 15. Took a chance (3 words) 19. Belong (2 words) 20. Reach, a goal for example 24. ___ the rainbow 25. Take hold of 27. Ali blow, for short 28. First female US Paralympian to claim gold in the summer and winter Games, Alana ____ 30. Comic character: __ man 31. Matter of contention 32. Global thriller, starring Brad Pitt 33. Network 34. Sort of:, suffix 35. Business promotion 36. The ____'s in the details 39. Well known dog 42. Does it make you more and more invisible? 43. Frontiersman, Carson 44. Ryan's "Love Story" co-star 45. Charleston state 47. Syndicate head answers on page 62
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