ABILITY Magazine Greg Louganis Issue

MAGAZINE

VOLUME 2010

GREG LOUGANIS

OCT/NOV

THE VOICE OF OVER 50 MILLION AMERICANS

$4.99 Volume 2010 GREG LOUGANIS OCT/NOV

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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

S

E DITORS

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RENNE GARDNER — Running With My Son

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THE PEARLS — Stories That Demand to Be Heard

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AMY EDWARDS — A Living Special Effect

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ADAPTIVE SPORTS — Getting Back in the Game

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X GAMES UNCOVERED — Taking the Inside Track

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CITYZEN — A Whole New Voice in Rock and Roll

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ADAPTIVE SAILING — Finding Your Sea Legs

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GREG LOUGANIS — Still Diving Into Life

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HIV AND AIDS — Battling a Fatal Disease

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BAD BOYS — Cracking Down on Discrimination

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HEALTHY HOOPS — Take Your Best Shot

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CROSSWORD PUZZLE

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EVENTS & CONFERENCES

Paralympic Games Beijing

SEN. TOM HARKIN — Where Are the Jobs?

H EALTH E DITORS

Larry Goldstein, MD Natalia Ryndin, MD

C ONTRIBUTING W RITERS Dive in p. 42

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

W EB E DITOR

Mary Shafizadeh Amy Edwards p. 20

G RAPHIC A RT / I LLUSTRATION

Scott Johnson Melissa Murphy - Medical Illustration ABILITY’s Crossword Puzzle

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Music Within

ASHLEY’S COLUMN — Bringing Home the Gold

P HOTOGRAPHY

Nancy Villere— CrushPhotoStudios.com Bower Motorsports Media

T RANSCRIPTIONIST Sandy Grabowski Tobias Forrest p. 38

DIRECTOR OF BUSINESS AFFAIRS John Noble, JD

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Extremity Games

X Gamers p. 30

Jayna Altman Diane Chappell Dahvi Fischer Renne Gardner Stan Hoskins Josh Pate David Radcliff Denise Riccobon, RN Jane Wollman Rusoff Maya Sabatello, PhD, JD Romney Snyder

MARKETING/PROMOTIONS Stan Hoskins Andrew Spielberg

NEWSSTAND CIRCULATION John Cappello

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EDITORIAL

editorial@abilitymagazine.com

NON-PROFITS

ABILITY Awareness/Fuller Center Habitat for Humanity

PUBLISHER

Chet Cooper

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 info@abilityawareness.org abilityawareness.org

I

t has been a crazy couple of months! At the time of my last column I was busy preparing for X Games and for competing in the Women’s Motocross Association’s race series. I am happy to report that I won my second gold medal at X Games!

When I first showed up at the LA Coliseum for the games, I was a little freaked out because the track was way sketchy. The triples were huge: a gnarly set of whoops, kicked off by a major drop-off, and then straight down and into a huge triple! (“Whoops” are a long series of low-to-the-ground jumps. Sometimes you can double jump through them but sometimes you need to “blitz” them.) I really struggled in the whoop section during my practices, especially when compared to a couple of the other top girls. This wasn’t helped by the fact that I am terrified of blitzing! To perform a blitz, you have to skim the tops of the jumps while not letting your front tire dip. Nine times out of 10, if your front tire drops, you are headed for a crash!

(there are only six laps in the girls’ race), taking first position as she came zooming up behind me. I stayed steady, just as my team and I had discussed. I wasn’t going to give up!

Even though I made a couple of mistakes, I hung on and kept pushing. The girl behind me kept inching up on me, but then she started to make mistakes too. She went off the track once and then, after the big triples, wound up going off the track completely! She went down hard and got banged up, but she was okay. Meanwhile, I kept on going, riding as hard as I could.

My mechanic held up a sign indicating I was way ahead.

I kept pushing forward. I wasn’t even aware that the other girl had crashed, and I didn’t want anyone to catch me! Soon I saw the white flag that indicated I had one lap to go. I was so stoked! And soon after that, the checkered flag flew out!

Yes! I had won another X Games gold medal!

I received third place during the timed qualifiers, where I came in about two seconds behind the other two competitors. I was sure I needed to find a way to make up time or maybe even change my whole strategy for the race. Fortunately my riding partner and coach for the X games, Jeremy McGrath, is a champion supercross and motocross racer. Jeremy has won many titles and is a test rider for Honda. I met with him and with my team manager, Erik Kehoe. Together we decided to stick with my original plan: jump through the whoops instead of trying to master blitzing them.

The day of the race, I shot off to a good start, taking second position. I knew I had to get quickly around the girl in front of me. I managed to pass her on the first lap 8

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But the fun didn’ stop there. After the end of my racing season, I began a tour with Red Bull. This three-stop tour, called “Under My Wings”, allowed me to visit schools for deaf students and inspire the kids to believe they can do anything. I was very excited to do this tour.

I had visited deaf schools in the past but these visits were all set up through Red Bull and included media.

The students knew I was coming and everything was prepared in advance. Still, I am always a little nervous when I go to visit schools because I am never sure how the students are going to respond to me when I show up.

The first stop on my tour was a track called Steel City in Delmont, Pennsylvania, where the students from the

Western Pennsylvania School for the Deaf came out to watch me ride. It was a pretty muddy day but I think everyone had a great time anyway. I know I did! I drove through the mud and, afterwards, all of the kids asked great questions. I signed some autographs and got to hang out with the students for a while. It was a motivational day for everyone.

The next stop was Galludet. I was nervous to go there— these students were my own age, and a lot of them had attended the Florida School for the Deaf and Blind with me, but I hadn’t spoken with them in about four years. I didn’t know how the students would react when they saw me, and I wasn’t even sure that anyone would show up in the first place because my presentation took place between classes.

much fun! Everyone seemed to really enjoy themselves and all of the students asked good questions. Some of my friends from the Women’s Sports Foundation even showed up to cheer me on!

I thank Jenner Richard and Red Bull for pulling my wonderful tour together. I feel so fortunate to be able to give back to the deaf community and to have a sponsor that wants to help me give back! ashleyfiolek.com

I shouldn’t have worried at all, because the turnout was great! Everyone seemed excited to have me there and I was thrilled to be there. The questions were fun to answer as I reunited with a lot of old friends. I hope we stay in touch!

The last of my stops was the Lexington School for the Deaf, in New York. I toured the huge school and some of its seven-acre campus. Everyone was really nice and seemed very happy to have me visit. I gave a presentation in the school’s auditorium and showed the students a video that Red Bull had made for the event. I had so ABILITY 9

self-sufficient as possible. But they can’t find work.

Beginning in October 2011, the Community First Choice Option—which includes the core components of the Community Choice Act—will be available to States.

States that select it will receive enhanced Federal matching funds—an additional 6 percent in the The Federal Medical Assistance Percentages (FMAPs). Specifically, the CFC Option will cover the provision of personal care services to individuals who are on Medicaid and are eligible for nursing home services—to help with the activities of daily living that will allow them to live independently in the community. I expect that many of the individuals who will receive services under the CFC option will be able to go to work, and will want to go to work.

TACKLING THE JOBS CRISIS Dear ABILITY readers, At its heart, the Americans with Disabilities Act is really very simple. To echo the words of one activist, the ADA is about securing the most fundamental of rights for people with disabilities: “the right to live in the world.”

That’s all that people with disabilities ask for. Not special rights, but the rights and opportunities that other Americans take for granted and exercise without a second thought: the right to participate in the community; to have the choice to live in the community; to have the opportunity to have a job that is commensurate with one’s interests and abilities, to be economically selfsufficient, and to have a fair shot at the American Dream.

Unfortunately, for all the amazing advances we have made during the first two decades of the ADA, we have made distressingly little progress in improving the employment opportunities, and the employment rate, of individuals with disabilities.

According to the most recent data, more than 60 percent of individuals with disabilities are not employed— some 21 million people in all. In addition, many individuals with disabilities who are employed are underemployed.

Make no mistake, this is a national crisis. We are talking, here, about people who want to work, and are capable of work. They want to be as economically 10

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On this score, I often think of my nephew Kelly, who became a paraplegic at a young age. He has attendant services that allow him to get up in the morning, go to work, operate his own small business, pay taxes, and live in his own home. How does he afford it? It is because he was injured in the Navy, and the Veterans Administration pays for personal care services. The VA pays for someone to help him in the morning and evening with the daily tasks that you and I take for granted.

Now, with the Community First Choice option, many others will have the same opportunity to receive these services, to be independent, and to have a job. It will be tragic if these newly independent people with disabilities run up against the same old impediments to employment.

It is time to tackle—head on—the employment crisis among people with disabilities. To this end, in early September, I convened leaders and advocates representing the full range of views within the disability community for two days of brainstorming and strategizing. We focused on four key topic areas: private employment; federal employment; supported employment and subminimum wage; and training and education. It was an extraordinarily productive meeting This two-day Washington meeting was billed as a “retreat,” but it was actually an advance. We left with a robust framework that we will continue to develop, and a commitment to go forward as a united disability rights community, speaking with one voice.

Next, sometime after the upcoming election, I plan to call together employers, including those who have shown leadership in hiring people with disabilities, to solicit their very best ideas for helping us moving

forward. Then, in early 2011, I intend to bring together representatives of both groups—the disability community and the employer community—to discuss a unified framework for action that will make significant progress in increasing employment opportunities for people with disabilities.

To date, the employment crisis among people with disabilities has seemed overwhelming and intractable. This is about to change. I am confident that, with a supportive Obama administration, a unified disability rights community, and a good faith effort by Corporate America, we can make significant progress in the years ahead. It is time, at long last, to make good on the ADA’s goal of economic self-sufficiency, including a job commensurate with one’s training and talents.

Sincerely,

Senator Tom Harkin harkin.senate.gov Senator Tom Harkin (D-IA) is Chairman of the Senate Health, Education, Labor and Pensions Committee

ABILITY 11

H

e’s got the look of a runner: long, skinny legs and a slender build that shaves years off his age.

Although he’s often reluctant to start a run, once I get him out the door, he skips and swerves and jumps with the joy of a newborn colt set free for the first time.

My 15 year old son, Garrett, is autistic. In the Gardner household, however, autism is not an excuse for doing anything less than one’s best, whether it be tackling classroom academics, doing chores around the house or participating in sports. Garrett is slower than most young men at processing auditory information and responding to instructions and requests. When he’s nervous or overwhelmed by sensory stimuli, Garrett will bow his head, focus his gaze intently on his hands and flap them like a crazed drummer.

And then there’s his speech: a sometimes incoherent random chattering to no one in particular. “Garrett, you’re

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jibber-jabbering again,” we say, to remind him that talking is something we do with other people. At times, Garrett can communicate with crystal clarity. Other times, it seems as if he’s speaking his own language. The more we question him, the more remote and jumbled the words seem to be.

Garrett was diagnosed as autistic when he was three years old. When he was four, after nearly four years in foster care, Garrett became our adopted son.

Over the last 10 years Garrett has run numerous 5K races and has joined the family for running and hiking workouts at the high school track and at local Orange County wilderness parks. Running always seems to ease his self-stimulation or stemming behavior (hand flapping) and counteract his ADHD symptoms, helping to increase his ability to focus and concentrate.

But Garrett has always been the reluctant runner. Like most kids his age, he’d rather play computer or video games than head out for a 10 mile run. Imagine his consternation when, last October, I informed him that Saturdays until March would mean getting up at six in the morning to join Dad and his friends for long runs. Instead of sleeping in and watching Saturday morning cartoons, Garrett would be training for the Los Angeles Marathon.

Long-time runners ourselves, Garrett’s mom and I firmly believed that Garrett could benefit from the discipline, goal-setting and fitness demanded of marathon training.

As a 20 time finisher of the Los Angeles Marathon, I know the benefits of running and of setting running goals.

I have followed the Students Run LA program closely and know how marathon training has helped many at-risk youth to stay in school and accomplish a variety of tasks.

However, I wondered if my 15 year old autistic son really could train for and run a marathon. After all, 26.2 miles is a long way for anyone to jog—and Garrett complains about the slightest discomfort caused by loud noises, flies, or a meal too quickly eaten. There is, of course, discomfort during any marathon. As I would be running with him, I knew I’d need to assist Garrett with drinking, eating and pacing. But many times it’s difficult to get my son to communicate how he feels or even if he’s in pain.

Nevertheless, we set up a running schedule and stuck to it. After some experimenting, we eventually hit on the right mixture of running and walking and learned that music and running were a great combination for Garrett.

Eventually, Garrett and I ran three 20 milers as part of his training and on March 21, 2010 successfully reached the finish line at the Santa Monica Pier in a little over seven hours.

Garrett is proof that autism is not a barrier to achieving athletic success.

Our first marathon training run took place last September, on the trails of the Whiting Ranch Wilderness Park near our home. It’s a six mile run with some climbing and downhill sprinting. Though normally fearful of the wilderness—especially flying and buzzing insects— Garrett was thankfully able to focus on his running, even asking me several times how he was doing. He did great, and made not a single complaint about bugs!

Most of our weekday runs involved a mile jog down the hill from our house to Serrano Park, a large, city-operated expanse that features tennis courts, a playground, ball fields and a dirt path around its perimeter.

On one occasion, after our regular session of six loops around the park, Garrett asked me if autism is a disease.

I told him his brain is just wired a little differently and that he is unique, with special talents and abilities. “It’s up to you,” I said to Garrett, “to find out what your special talents are.” I told him that some people with

autism, because of their ability to focus on one thing at the exclusion of everything else, have become experts in their fields. I reminded Garrett of the story of autistic animal science professor Dr. Temple Grandin. (Garrett has been fascinated by Dr. Grandin’s “hugging machine” ever since watching the HBO movie that bears her name.)

In addition to being autistic, Garrett also has Attention Deficit Hyperactivity Disorder (ADHD), which often necessitates that his medications are changed, or that doses are lowered or increased. In October, at the Toyota of Orange 5K, Garrett was off of his medicine and very hyperactive. You might think that this hyperactivity could be channeled into fast running. On that particular day, however, Garrett did a lot of fast walking. “I’m saving my strength for the finish,” he said. Sure enough, Garrett was able to sprint away from me during the last few hundred yards, his head rocking back and forth like a bobble head doll to the cheering of the finish line spectators.

On the Monday after the 5K, Garrett wore his race tshirt and medal to his junior high special education class, for show-and-tell. I still don’t know which one of us was prouder of his achievement.

Toward the end of October, Garrett seemed to be getting stronger, often doing our weekday run to the big park and back (including the climb back up the hill) without stopping. I told him that, if he was getting tired, he should simply slow down. When I asked him if running is getting easier, he said it was.

During an early November training run of two loops around Lake Mission Viejo (totaling about three miles), I let Garrett run with a youth marathon training group called We Run Orange County’s Kids (WEROCK).

Given his training, I estimated that Garrett should finish the two loops in 65 or 70 minutes. When he didn’t show up at the finish within that time, I ran out onto the course to look for him, worried, of course, that something horrible may have happened.

As it turned out, I needn’t have worried: my son was simply walking and slow running with the other kids.

Socializing and making friends is not easy for Garrett or for anyone with autism. To see him hanging with other kids his age was an encouraging sign.

I later learned, however, that I may have been pushing Garrett a little too hard. My wife told me that Garrett had confided in her that he didn’t like running with me because I forced him to work harder and run faster.

Although I had thought my discipline was good for Garrett and his training, I decided to ease back a bit and let Garrett run at his own pace. I knew that a 10K race was coming up in November and, although I thought 70 minutes a reasonable goal for him, I decided to let him manage his own speed. I resolved simply to make sure he drank and walked a little at each mile.

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At Tustin’s Dino Dash 10K, regular walking seemed a good way to extend Garrett’s ability to go long distances.

He finished in 66:57, for an average mile pace of 10:45.

As he had done at other races, Garrett sprinted the last 50 yards or so. I started to consider lowering his 10K race goals, then remembered the conversation I’d had with my wife. Just let Garrett run like Garrett, I reminded myself.

Garrett performed well at the Dino Dash, drinking water at all the aid stations, and ended the race amazed he was able to pass some runners we know. “Do the work,” I told him, “and any goal can be achieved.”

Increasingly longer weekend runs were planned all through the months of November, December and January, culminating with a few 20 milers in February. We decided to stay consistent with our schedule of short weekday runs and long runs on the weekend. In short time, Garrett grew in confidence as he learned a better sense of pacing and how to tend to water and calorie needs.

In early December Garrett ran a 12 miler in 2:38 with the WEROCK kids. When I finished my own run, I headed back on the course to catch up with Garrett to run the last few miles alongside him. When I met up with Garrett, he was walking with one of the other kids, helping him out, supporting him, he said. Then, when we started running the last couple of miles, Garrett sprinted away just as he does at the finish of a race. I realized I couldn’t keep up with him.

At the finish, Garrett asked me, “Am I faster than you now, Dad?” “At times,” I answered, “you certainly are.”

In January Garrett and I started joining some of my friends for long weekend runs on the boardwalk at Huntington Beach and on the Santa Ana River trail. Garrett told me it’s easier running at night than during the day—a comment that may have had something to do with the fact our long weekend runs took place during the day.

Because the river trail has painted white mile markers, Garrett enjoys running it more than he enjoys running the Huntington Beach boardwalk. Although I’ve told him that the distance from our car to the Huntington Beach pier is approximately three miles, Garrett trusts the painted mile markers more than Dad’s estimate.

Our long runs in January and February helped us finetune our ratio of running to walking. The walking breaks allowed a needed rest for our running muscles and helped extend the distance we could run. Walking each mile often helps Garrett finish the long runs.

Garrett did quite well during the opening 12 miles of our first 18 miler. He struggled during the final six miles but—with the help of walking breaks, Gatorade, gels, gummy candies, and his mp3 player—was able to finish.

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Although some running experts frown on the use of music players during runs, noting that a runner could be distracted from safety considerations, Garrett enjoys listening to his tunes and commenting on songs or on what he hears on the news. He also enjoys the camaraderie of running with the guys and sharing comments about the natural and bikini-clad scenery of the beach.

Marathon morning could not come quickly enough for Garrett. In his mind, a race day means the end of Saturday morning torture-athons. Finish the marathon, he figures, and Saturday mornings are his once again. He’d be able to return to his favorite habit of staying folded in a warm blanket until hunger for bacon and peanut butter toast gets the better of him—or until it’s time for Yugioh, Dragonball-Z or Teenage Mutant Ninja Turtles.

I, on the other hand, absolutely relish our running times together. I’m not much of a Yugioh card player, video game player or fan of Saturday morning cartoons, but running is an activity that my son and I can do together.

As we trained I knew that four days a week, father and son would get some time to talk about school, and goals and dreams and problems.

During our runs, Garrett sometimes told me about kids who teased him or chased him or called him names. He would tell me about girls he liked and ask me how he could get them to like him.

“Be yourself, Garrett,” I told him. “Just be yourself. Tell your goofy jokes—jokes that sometimes only you understand. Talk endlessly about the latest video game you’ve played. Be your kind and generous and friendly self.”

Because marathon training had been such a positive experience for father and son, I was determined to make sure that the marathon itself would also be a good one. Too often I’ve heard first-time marathon runners lament, after suffering through a race, “Never again!” I did not want this to be Garrett’s experience. I didn’t want this to be our memory.

Although I harbored notions of Garrett running a fast time, I realized that if I were to sustain our regular runs, first and foremost, Garrett would need to have a great experience. He needed to have lots of fun. (The idea of using the words fun and marathon in the same sentence may seem outrageous to some, but Garrett had put in his miles. He was well-trained to go the distance.)

The Saturday before the race, we attended the marathon expo at Dodger Stadium and—like 30,000 other runners—loaded up with free samples of soy milk, energy bars and sports drinks. The expo was crowded and noisy and probably not the greatest place for an autistic boy who can be overwhelmed by the sound of a passing car, a shout from kids in the neighborhood or a flushing toilet.

With his mother and sister, and friends Kent and Loretta Street, we left for our hotel room near the Santa Monica

Pier. Our plan was to rest, see a few sights, eat some pasta and get to sleep early. In the morning, we’d get up early and catch the bus to the start at Dodger Stadium.

Garrett counted all of his free samples, then counted them again. He read all the brochures and maps, then read them again. I was just as fastidious, laying out our running clothes and shoes, pinning our race numbers on our shirts, locating the bus pickup location on the map, setting the alarm clock and ordering a wake up call.

Garrett fell asleep quickly that night, but I tossed and turned, worrying about the next day’s run. How would Garrett react around 25,000 runners? How would he react during a bad stretch? How would I react when Garrett started to tire or bonk?

So many things can go wrong during the running of 26.2 miles: blisters, dehydration, bonking, chafing.

Heck, a runner could easily fall and twist an ankle. As prepared as an athlete tries to be for any contingency, sometimes finishing a marathon is just out of his hands.

I still remember a Los Angeles marathon during which I fell behind on fluids and electrolytes and, at mile 18, felt every single muscle in both legs suddenly seize with cramps. I fell to the ground hard, unable to get up. It took large quantities of Gatorade (and several minutes of massage by an aid station volunteer) before I was able to get up and hobble to the finish line.

Fortunately I had a plan that would help us avoid a similar fate for Garrett. Eat and drink at regular intervals.

Mix in a lot of walking. Enjoy the sites and the cheering crowds. If those plans happened to go awry—well, just try to keep a good attitude and take away lessons for future attempts.

Unfortunately, things seemed to go badly before Garrett had run even a single step. Because of limited access points into Dodger Stadium (and 25,000 runners all trying to get to the venue at the same time), there was nothing but “stop and stop” traffic on the freeways within five miles of the stadium. Some runners even abandoned their rides, opting to run and walk along the side of the freeway.

It was at this point that I began to panic about potentially missing the start of the race. There was no panic in Garrett, however. He simply enjoyed the ride: remarking on the skyline of downtown Los Angeles, the beauty of the sunrise, and waving to the passengers in the other buses. I took a lesson from Garrett and relaxed. After the stress of the bus ride, I thought, running 26.2 miles might be a breeze.

We entered the start chute just in time to hear an announcement regarding a late start to accommodate heavy traffic. Allison Iraheta, a former American Idol competitor, sang the national anthem. Then, we were off ABILITY 15

traversing the course, solid food was necessary to sustain our energy levels. Garrett enjoyed Snickers bars, peanut butter and jelly sandwiches and potato chips as we made our way toward the finish. We high-fived as many spectators as we could. At one point Garrett even got a warm hug from a cute aid station volunteer.

But this run wasn’t all fun and games. Twenty-six miles is a lot of ground to cover for anyone, and often runners don’t finish because they’ve failed to train sufficiently or get injured or just plain run out of steam. Many hit the so-called “wall” after 18 or 20 miles.

to the inspiring “I Love LA” by Randy Newman. (More accurately, we heard the start gun and were only able to rock in place for another 10 minutes or so before finally inching forward.)

I worried about starting out too fast and expending too much energy during the first half of the run, an approach that would leave us with insufficient energy to finish. So at each aid station where we could take water and Gatorade, Garrett and I walked a little more than we had walked while in training. We took our time and enjoyed the initial sights. After circling Dodger Stadium, we ran toward downtown, passing Los Angeles City Hall, the Cathedral of Our Lady of Angels and the Disney Concert Hall. Garrett was unimpressed.

“Isn’t this a beautiful course?” I asked him.

“I can’t wait to see Hollywood,” was his response.

A lover of movies, Garrett has often expressed interest in acting and in making films. He enjoys drawing comics or storyboards about ugly aliens shooting even uglier aliens. His Star Wars or Bionicle action figures have frequently been the stars of home videos.

We jogged into Hollywood, passing the Capitol Records Building, Hollywood and Vine and Grauman’s Chinese Theater, and viewed the Hollywood sign in the distance.

This was the highlight for Garrett.

It turned out I didn’t have to worry about Garrett being overstimulated by the crowds and activities. (He actually seemed to enjoy them!) At three or four points along Santa Monica boulevard, firefighters opened hydrants or aimed hoses at the runners to cool us off. Garrett ran a bee-line toward the spray each time.

Several of the aid stations offered foods that aren’t your typical marathon treats. Because of the long time spent 16

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Garrett’s feet began aching around the twenty-second mile. Because he started grimacing with pain, we decided to walk much more than we ran. At times it was difficult for me to maintain a positive tone as I encouraged Garrett to keep moving. Hundreds of runners passed us as we continued along San Vicente boulevard toward the ocean. “The pain was extreme,” Garrett later told me. (Only much later did he inform me he had to go to the bathroom!)

Although Garrett was hurting during much of our final four miles, he did not quit. I would like to believe his steely resolve during this test is something he will remember when he faces other challenges or problems in his life. I hope he will simply do his best.

The turn on to Ocean boulevard (which marked just one mile left to go!) was, for me, the most thrilling part of the race because it was then that I knew Garrett would finish the marathon. One step at a time was all it took.

There was no sprinting at this finish line—just lots of hugs and a very proud dad. My son and I finished the twenty-fifth running of the Los Angeles Marathon in 7:09:34.

During the car ride home, I asked Garrett if he would ever run another marathon. He said yes. “What part was the most fun?” I asked him.

“When it was over,” he said with a laugh.

Garrett sleeps in a little later on Saturday mornings now. Though our Saturdays no longer include a 15-20 mile run, I am happy to report that father and son continue to run regularly, putting in five or six miles each weekend. Garrett is still a reluctant runner, but he will always be a marathon finisher.

As I write this piece, Garrett is starting his first day of high school. Although I am a bit unsure if the lessons of the marathon will carry over into Garrett’s life, I know one thing for certain: with focus and hard work, Garrett will achieve great things.

by Renne Gardner werunockids.org

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hortly after learning that her newborn daughter Shaylee was deaf, Sheena McFeely gleaned some equally sobering news from a brochure at an audiologist’s office. Deafness, the brochure read, makes it difficult for a child to make friends.

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thrive on socialization. Even when I was in high school I was very much a ‘bring it on’ personality. I think I gained the respect of my peers early because I was open and I was cool and I always wanted to make more and more friends. That’s just who I am.”

The news hit McFeely like a punch in the gut. “I read that sentence,” she remembers, “and I thought, ‘Can you imagine this message is being spread to parents who have no knowledge of deafness?’ These parents are already grieving and this adds to their burden without giving them any sort of positive perspective.”

McFeely’s natural exuberance and gift for communication served her well during an upbringing that bounced her from Hong Kong to Ireland to a high school in Burbank, California. While in high school she was a yearbook editor, an athlete on water polo and swim teams, and founded the American Sign Language (ASL) club.

She was also elected to the school’s student government until an administrator informed her that, due to her deafness and inability to use a microphone, she couldn’t fill the position. McFeely and her family fought the decision, taking the matter to the school’s principal, but by the time the dust had settled, McFeely had decided she didn’t want the job.

McFeely had good reason to be critical of that brochure’s latent cynicism. Much like her now sixteen-month-old daughter, Sheena McFeely is deaf.

Friendships, as it turns out, come naturally to her.

“I love people,” McFeely said via a translated phone conversation. “I am absolutely a people-person and I 18

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“The position was offered to me,” McFeely said, “and I

told them, ‘No, I don’t want to work for you. The only reason I fought this was because I don’t want this to happen to any other kind of student who might be interested in running someday. I wanted to make you aware you can’t do this.’”

Now a resident of Maryland—and married to a college friend who also happens to be deaf—McFeely works as an event planner and marketing consultant. Her most recent brainchild is likely her most personal gala thus far: The Pearls, a celebration of 21 successful deaf women from across the United States.

“When I was younger, it was so hard to find anyone deaf out there to look up to,” McFeely said. “My hope is that The Pearls will be a wonderful way to influence other young women who are growing up deaf. I want my daughter to experience a different sort of world than the one my husband and I grew up in.”

Inspired in part by an Oprah Winfrey presentation titled The Legends, which shone a spotlight on diverse and successful African-American women, McFeely’s project is a dinner that recognizes advocates, artists, business professionals, and other high-achieving deaf women whose efforts often go unnoticed by the public at large.

The roster of “pearls” includes clinical psychologist Dr. Cheryl Wu, early childhood educator Laura Lopez, and Claudia Gordon, the first black deaf female attorney in the United States.

Though the event, scheduled for next summer, will be closed to the public, McFeely says she has plans for the Pearls celebration to be broadcast online.

“I wanted to host something for these women that was very formal and very classy,” McFeely said. “The number one goal is to celebrate and increase awareness within and about the deaf community. There is nothing that these people can’t do. They each set an example for all of us: be an actress, be a lawyer, be whatever you want to be. Focus on that passion and just let everything else fade away.”

The power and rarity of deaf role models carries personal resonance for McFeely, who says she struggled academically before she happened to have a deaf math teacher while in high school. “He was a huge influence on my life,” she remembers, “because one of the things he taught me was that I am not stupid. He taught me that the frustrations I’d been feeling all along weren’t my fault; they were the fault of my teachers who didn’t have the patience to actually sit down and teach me.”

Today McFeely and her husband, Manny Johnson, aim to instill in their young daughter a similar sense of possibility and empowerment. Together they teach Shaylee both audible speech and ASL, in the hopes that a plurality of communication styles will help Shaylee determine what works best for her as she matures.

Sheena McFeely and daughter Shaylee

“We don’t want to just force Shaylee to sign,” McFeely said, “because maybe that’s fine for me but not for her. I have a good friend who prefers to speak and I prefer to sign and we get along. Everyone has different needs.”

Herself the daughter of two hearing parents, McFeely says she expects her own daughter will benefit from being raised by parents who understand a life without hearing, as well as from an increasingly technological culture that promotes all forms of communication. The limitless possibilities for Shaylee’s future excite McFeely both as a mother and as a deaf woman.

“When I grew up, all I could see were my parents’ mouths and could hear nothing,” McFeely said. “They didn’t know how to communicate with me, so that language piece was lost. But my daughter has two deaf people in the house, signing, feeding her language every minute of every day. Also, there’s more exposure and opportunity for deaf people today—with technology, the Internet, with closed captioning on the television. So I think that we should expect better.”

McFeely says her high expectations, for her daughter and for the deaf community at large, are driving forces behind the Pearls endeavor. “We need to all work together in a coordinated effort,” McFeely said. “If deaf young women can meet other deaf people or see their successes, maybe the experience will help them realize that their own futures will be okay.”

by David Radcliff The Pearls private event will be held on June 4, 2011, in Studio City, CA themprojects.com

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visual effects artist for major motion pictures, Amy Edwards is a multilingual dancer, polo player, horse lover and globetrotter. She was also one of 20 women honored by “The Pearls”, a multimedia project showcasing high-achieving deaf women from all walks of life. ABILITY Magazine’s David Radcliff caught up with Edwards via online chat.

Radcliff: Congratulations on being selected for The Pearls.

Edwards: Thanks! I’m very flattered to have been selected.

Radcliff: You’re one of four women featured in the Artists category of the project. Tell me about the kind of art you do.

Edwards: I’m a visual effects artist for feature films.

I’ve worked on Fantastic Four, Pirates of the Caribbean, Spider-Man 3 and Beowulf, and some others. Mainly I do a lot of studio work. Right now I’m working on George Lucas’s next project, Red Tails.

Radcliff: Is this all freelance? The studios seek you out for individual jobs?

Edwards: That’s correct. And I’ve been doing that consistently for nine years. I work very hard to build a good reputation and I’ve been very, very fortunate to have very steady work. They seek me out because they know 20

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I’m reliable. When I make a promise to someone, I follow through. That’s important to me. It’s amazing how many people don’t do that.

Radcliff: How did you get your start in the visual effects field?

Edwards: Oh, it was something I’d known I wanted to do since I was five years old. My mom had bought me a VHS tape of Cinderella, the Disney animated version.

Seeing all those mice and birds dancing while they sewed Cinderella’s dress was magic to me. Who can resist “Bibbity Bobbity Boo”?

Radcliff: Those VHS tapes didn’t have closed captioning options, if I remember right. Were you mostly filling in the blanks based on reading the expressions of the characters?

Edwards: That’s right. And fortunately the animators managed to convey the emotions very well. I didn’t have to rely on vocabulary because the body language was so nicely captured.

Radcliff: What were the reactions of your parents to your dream of working in the movies? Was there concern that your hearing might limit your opportunities?

Edwards: I don’t think so. They were very supportive, and they tried their best to raise me as “normally” as pos-

sible. Every time we went on a family vacation, my mom would bring along some paper and colored pencils, crayons, markers because she wanted to nourish my artistic talents. I also took ballet for over 11 years, mostly because every female in my family took ballet—my aunts, my cousins. And I stuck with it. I did endless plies.

Radcliff: That’s impressive. Was it difficult to learn dancing, since ballet is so structured around rhythm and music?

Edwards: Yes! It was hard! That was an area I really struggled with. My teachers would tell me “Feel the music! Feel the music!” But it’s easier said than done. I would mostly need to rely on other dancers and watch them. Those were my biggest clues. I was born in Indonesia and didn’t move to the United States until I was 13, and the teachers I had in Indonesia were not as receptive to my disability as the ones here. I don’t mean to disparage them in any way. It’s really just a cultural difference.

the principal told them that I could not be kept as a student there. He said they had no “support services” for deaf children. I remember my mother sobbing.

Radcliff: That’s discriminatory.

Edwards: It is. But when you’re in a third-world country, “discrimination” does not exist. It’s like this: whenever you fly on Southwest Airlines, the flight attendants are young, old, fat, thin. But try flying on Singapore Airlines and you’ll see that all the attendants are young, slim, and beautiful. Is this discrimination? Maybe. But it is their culture. They think, “We have an image to uphold.” And you play along.

Anyway, after what the principal had said, my parents panicked. They didn’t know where to send me to school. They tried to enroll me in Bandung International School, which was in my grandmother’s hometown, about three hours away. But my initial meeting with the principal of that school didn’t go well either.

Radcliff: You do have some hearing, though, is that right?

Radcliff: Because you’re deaf?

Edwards: In my left ear I am completely deaf. In my right, I am severely hard of hearing and use a hearing aid. But I am very sensitive to people’s body language.

Because I can’t hear everything, I rely on every nonverbal cue that I see. The tilt of a head, the emotion in people’s eyes—even a flicker of fear or trepidation or hesitation—speak volumes to me. I have done equestrian sports since I was five years old and, here in Los Angeles, I’m the only deaf member at the California Polo Club. So you really have to find ways to communicate. Sometimes your teammate might be yelling at me, “The ball is on your left, Amy!” and I may miss what they say. So I need to heighten my awareness visually to compensate. And I also have to hope that I don’t get slammed by a horse going 40 miles per hour.

Edwards: Yes. The principal, Mr. Allen, made me sit at the front of a room, in front of my parents and other teachers, and said he wanted to do a “test” on me. Basically he said, “If you pass this test, we will allow you into this school.” The test was to repeat every sentence that he said. And the kicker was that he mumbled on purpose and covered his lips. It was a deliberate setup to make me fail. To this day, I have never been so humiliated. It was totally demoralizing.

Radcliff: Wow. You do a little bit of everything, it seems.

Edwards: I try to live life to the fullest. I love the adrenaline rush I get on a galloping horse. But I have a big bruise on my right knee as we speak.

Radcliff: Tell me about growing up in Indonesia with your disability. I would guess there were plenty of challenges, but you don’t seem to shy away from those.

Edwards: Well, my life was not all ballet and horses and fun stuff. I had some tough times, especially when it came to school. My parents enrolled me in a private school in Jakarta and I was the only deaf student there.

Radcliff: And this was in front of your parents and other teachers?

Edwards: Yes. To be honest, a part of me died on that day, and I still think about it. It still makes me emotional. Obviously I failed the test miserably. I was too proud to cry in front of him. I even remember what I wore that day—it was this pink top and skirt. My favorite outfit.

Radcliff: That’s heartbreaking.

Edwards: After that all happened, my family felt helpless. We had no other options, and I ended up moving to Canada and living with my mom’s youngest sister. I was terrified because I was 10 years old and I didn’t want to leave my parents. Also, in my new situation in Canada, German was spoken in the home and French was spoken outside the home, in our neighborhood. So I had to learn French very fast.

Radcliff: How many languages do you speak?

Radcliff: That seems to be a theme of your life: being the only deaf person in a competitive group.

Edwards: Yes! I don’t know why. When I was in the fourth grade, my parents got called into my school and

Edwards: I speak fluent Indonesian, English, Portuguese and conversational French. And American Sign Language. Any time I have to learn something new, I just put my mind to it and ask myself “How badly do you ABILITY 21

Amy Edwards with Apolo

want this?” Because if you want to learn something really badly, you’ll make it happen. I had to learn French because I would go to the store in our province of Canada and no one spoke English. And I needed to get groceries. So I would take home books from school and I would manually translate each word from English to French or from French to English. I had to use translator dictionaries because back then we didn’t have Google. But that’s how I learned.

Radcliff: Right. That’s incredible.

Edwards: After two years in Canada, I got so homesick and I wanted to see my family, so I flew back to Indonesia for what was supposed to be a summer break. We found a school for me where, fortunately, the principal was not cruel. I just needed to prove myself. I worked very hard and pulled good grades. And then my family 22

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got the green card lottery to move to the United States.

And today I am in Los Angeles, and my family is here and I’m doing work that I love. I feel very satisfied with where I am in life.

Radcliff: Things worked out pretty well, all things considered.

Edwards: The truth is that for anyone, being deaf makes life harder. It makes things harder in social situations, in your career, in your daily living. But I don’t really have a sense of “what if?” And the odds may be against me because I am deaf, but I always tell deaf people not to make deafness such a big issue that it overshadows yourself and your talent. amy-edwards.com themprojects.com

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Adaptive Action Sports athletes competing at the USASA Nationals.

(L-r) Amy Purdy and Daniel Gale are the co-founders of Adaptive Action Sports (AAS), an organization for extreme sports enthusiasts with disabilities.

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n artist and competitive snowboarder, Amy Purdy dreamt of spending her adult years traveling the world and snowboarding. But at the age of 19, after a day of experiencing flu-like symptoms, Purdy was rushed to the hospital in a state of septic shock and diagnosed with bacterial meningitis, a deadly blood infection. After fighting for her life for nearly three months, Purdy lost all kidney function and both legs below the knees. None of this, however, stopped her from pursuing her dreams.

“After I lost my legs, all I wanted to do was snowboard again,” Purdy said. “I remember spending an entire year on the computer, looking for ‘adaptive snowboarders’ or ‘snowboard legs’ or ‘adaptive snowboard schools’ or just something that I could connect to. I already knew how to snowboard—I just needed to find the right legs.”

While Purdy acknowledges there were “tons” of information available on adaptive skiing, cycling and running, she found nothing tailored towards the more

extreme sports that she loved. “I kind of had to figure stuff out on my own and get myself snowboarding competitively again,” she said. “I went through all types of different legs to try to learn which were going to work for me. Luckily I was able to figure it out.”

Shortly after having resolved her own search for adaptive equipment, Purdy partnered with friend Daniel Gale to develop Adaptive Action Sports (AAS), an organization for fellow extreme sports enthusiasts who have disabilities. “Daniel’s mom is a nonprofit consultant,” Purdy said, “so she really encouraged us to start up a nonprofit organization. We weren’t too sure what was going to come out of it at first, but once we were founded, we easily fell into a great niche. Now it’s kind of taken on a life of its own.”

It wasn’t long before that life quickly began influencing the lives of athletes who, like Purdy, were unwilling to accept a future without sports. Another of Purdy’s friends—actor and professional skater Jason Lee—also ABILITY 25

Evan Strong at Adaptive Action Sports’ 8 Leg Skate Tour in San Francisco.

contributed to the cause. “Jason decided to throw us a big fundraiser to just kind of kick things off,” Purdy said.

“We raised quite a bit of money from that event, which was able to kind of just get us going. From there, we started sponsoring a couple of action sport programs.”

When Brent Kummerle—a professional rock-climber and friend of Purdy and Lee—organized a three-day event for amputees and wheelchair users, he received a financial contribution from the steadily-growing AAS. The following year, the United States of America Snowboard Association (USASA) opened an adaptive class as part of its national competition, the largest snowboard competition in the world.

This expansion of adaptation marked something of a personal victory for Purdy. When she had attended the national event in previous years, she found “it was just me and a couple of other random people who showed up to compete in the adaptive division. So we decided if we marketed this event better, and if we made it more affordable, more people would show up and attend.”

Her efforts paid off. Purdy estimates that, in the first year after her marketing push, the event had 15 adaptive snowboarders. The next year boasted 20. “We’re hosting and promoting and taking over that adaptive division, helping the numbers grow,” Purdy said. “We’ve really 26

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fine-tuned it. We’ve done that every year.”

These days, the visibility of Purdy and AAS is so significant that athletes regularly seek her out. “We get emails every day from people around the world, or right here within our country,” Purdy said. “They relate to what we’re doing and relate to the people involved, since we’re all really active and we don’t let anything stop us. Every time we bring on a new athlete, that person becomes one of our closest friends. It’s pretty cool.”

Purdy’s joy and support for her athletes were obvious at the recent X Games in Los Angeles, an event that now features paraplegic and adaptive events for Moto X, skateboarding and BMX. During the preliminary runs for the Moto X event, Purdy positioned herself at the starting line, not just as a sign of encouragement, but to make sure enough help was available in case one of her athletes went down.

“For me, it’s hard for me to just sit back in the stadium and watch,” Purdy said. “I feel like I need to be down there on the dirt and totally involved. Blood, sweat, and tears go into our organization and our events. It’s a nurturing instinct. I love these athletes so much, and when one of them goes down, I’m ready to drop whatever I’ve got and run out there and help.”

To help its athletes find and fund their equipment, AAS has partnered with the Challenged Athletes Foundation (CAF). At the beginning of each September, once CAF grants become available, Purdy says she and AAS send newsletters to “every adaptive athlete we know, to get them to go after a CAF grant.”

Purdy admits the partnership has provided significant financial relief for AAS. “Originally, we were trying to do it all,” she said. “We were trying to raise enough money to grant the athletes to attend our events, and it still costs us money just to put the events on.”

Meanwhile, the appeal of AAS continues to spread across the globe. “The Internet’s been crucial for our growth,” Purdy said. “The first year we did the Moto X at the X Games, a guy came here from Germany, and some others from Australia. And it’s just going to keep spreading even more.”

Purdy says she never could’ve anticipated that potential for growth when she was in the early days of her recovery.

“When I first lost my legs, the Internet was around, but there wasn’t any way to find out about anyone else like myself,” she said. “I searched and I searched. I even called all the adaptive ski schools in the country and asked them if they knew what kind of legs I needed for snowboarding, or if they knew any other adaptive snowboarders. And they had no clue what to tell me.”

Today, with the X Games airing on ESPN and across the globe, Purdy recognizes the broad impact of her work. “We get a huge flow of e-mails from people who have been injured,” she said. “A lot of them have been injured while motocross racing but want to get back up on their bikes. Now they’re more motivated than ever to get back in shape and to modify their bike and start riding again. It’s pretty cool.”

And how was Purdy’s own experience at the X Games?

“It was so incredible,” she said. “So much work goes into preparing for the games, so much energy. And then to actually watch…It’s just incredible. I’m just overwhelmed by inspiration and I’m feeling so proud of what we’ve been able to put together. I’ve also got major motivation to do even more next year.”

Purdy admits a main source of her motivation stemmed from watching the 28 athletes with disabilities who participated in the X Games. “Darien Glover inspired us incredibly,” Purdy said. “He’s still a teenager and was injured while riding a dirt bike in a motocross race. But he’s just got so much fire and energy inside of him. He’s so pumped up and ready to race. He came out to the games as an alternate, and his whole family drove across the country, pulled together whatever money they could, got as much support as they could to get out there. Darien knew he wasn’t going to get in that race, but he got off of the track with the biggest smile on his face, more motivated than ever to get on his bike and ABILITY 27

(l-r) Evan Strong and Robbie Owens at Element YMCA Skate Camp in California.

(l-r) Amy Purdy, Danielle Burt, Evan Strong, Oscar Loreto, and BMX rider Paul Bonner at Paralympics in Vancouver, BC.

training as hard as he can all year so that he can come back and race again next year.”

Glover was awarded the Jason Amy Cup for his spirited participation in the games. The cup is named after a participant from the 2008 X Games, the inaugural year for adaptive racers. “That first year was heartbreaking, because Jason Amy unfortunately passed away during practice,” Purdy remembered, noting that Amy’s death wasn’t from a sports-related injury but instead was the result of carbon monoxide poisoning in his motor home near the course.

“It was just incredibly shattering and heartbreaking for all of us,” Purdy said. “But what was amazing was that Jason’s family had been so prepared for him to come out to the X Games that they still came out to support everything we were doing.”

While the Summer and Winter X Games stand as the nonprofit’s biggest focuses during the year, AAS continues to play a role in the USASA Snowboard Nationals and enjoys a partnership with the Extremity Games, the latter of which hosts wakeboard, skateboard, rockclimbing and kayaking competitions in Texas.

Many of the athletes affiliated with AAS have also gone on to compete against athletes without disabilities. “It’s a goal for a lot of our athletes to do that,” Purdy said.

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“We all get to be together. It’s a big camaraderie thing.

We’re all just there to help the sport grow and to represent what we are all capable of doing.”

Skateboarder Evan Strong, an AAS athlete, recently traveled through Canada as part of the Ambush Skateboard Tour, sponsored by Gatorade. During his travels, Strong spoke about AAS and mingled with professional skateboarders. For Purdy, this sort of visibility is all just another step in AAS’s growth from a simple idea into a worldwide phenomenon.

“We were all pretty hard-core about sports before our injuries,” Purdy said. “For me, snowboarding wasn’t just what I did, it was who I was. I wanted to snowboard more than I wanted to walk. All I talked about in the hospital was, ‘When can I snowboard? Are there snowboard legs?’ Our athletes were competitive in their sports before they were injured, so they’re going to figure out a way to do it again. That’s what makes our organization really stand apart from others. Our athletes are motivated, positive, and driven. And also incredible at what they do. All these athletes that come into our events are basically saying, ‘Take my leg, I’ll figure it out.’”

by Stan Hoskins adacs.org

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Photos by Bower Motorsports Media

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riven by something much deeper and more permanent than mere accolades, the paraplegic and amputee athletes of the thirteenth annual X Games routinely conquer their disabilities by returning to the sports that are responsible for their injuries. With crucial funding and promotion courtesy of Adaptive Action Sports, these athletes hit the X Games ready to win.

ABILITY Magazine’s Stan Hoskins spoke with a few of the participants of the Moto X competition before and after the event. Their stories were as unique as the sport they love.

CHRIS RIDGWAY Chris Ridgway had dreams of taking home his third X Games medal. But the day before his big race, a devastating blow to the knee during practice rendered him unable to put any weight on his leg, with or without his prosthetic.

The injury took place during the athlete’s second practice session, when Ridgway came down the backstretch of a jump and was just off-center enough to throw his weight over the handlebars. His knee stopped his launch, but the triple clamps rendered painful damage.

Stan Hoskins: You’ve been a dirt bike rider for most of your life?

Chris Ridgway: Yup. I started riding dirt bikes in 1980, and since about 1984 I’ve been riding a lot. Eventually I made it up into the pro ranks. My second professional race was here at the

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Samuel “Sampie” Erasmus tears up the track at the LA Coliseum during X Games 16, where Erasmus won the Paraplegic Super X Adaptive race.

Coliseum, back in ‘92. I just love riding dirt bikes.

Hoskins: Tell me a little bit about your injury and about coming back to ride again.

Ridgway: In 1995 I was practicing for the outdoor nationals on a track, just pounding out laps. I missed a big jump and my bike broke, mid-air. I had to jump off, and ended up crushing both of my legs, my ankles and my heels. I spent a couple years in a wheelchair.

The doctors didn’t amputate right away, so I just kept going, doing what I could do to see where I could take myself. I started racing again, and I kept breaking my leg. The doctors kept breaking it to try to fix it, to try to make it better. And finally I asked to have it removed so I could just kind of move on with my life.

Hoskins: So you knew, right after your amputation, that you were going to keep riding?

Ridgway: I was pretty sure. I didn’t know, because I had never lost a leg before.

Hoskins: [laughs] Sure.

Ridgway: I didn’t know how the amputation was going to feel. I just knew that I wanted to do it.

Hoskins: Tell me about participating in a big event like the X Games and about riding on a course that seems pretty intense.

Ridgway: It’s great to be on such a big stage. You wouldn’t be talking to me if we weren’t here at the X Games, you know? I love it. We’re on television, I get 32

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sponsorships, I get all kinds of stuff because of this race. I really enjoy it. It’s a lot of fun for me to be out here again.

Hoskins: It’s got to feel good, too, knowing that this is the same course on which people without disabilities are racing. The stage is just as intense for them as it is for you.

Ridgway: Actually, they did cut out the whoop-dee-doos for us, because those things are too hard for us to get through. But we’re doing all the jumps. It’s crazy.

Hoskins: Three years ago, would you have imagined doing what you’re doing, at this level?

Ridgway: No. I didn’t think we’d be at the X Games, but I knew from my riding that I was going a lot faster than a lot of people do who don’t have a disability. So in that sense I kind of thought there would be a place for us to go. I’m glad to be here, and it’s a little intimidating, because the track is so big. But it’s fun, and I can see us going even further than this.

Hoskins: What’s it like to return to the Coliseum with your injury? Is it a little weird being back here?

Ridgway: No, it’s actually nice. A lot of the guys that I used to race against are now team managers and mechanics, and they’re still involved in the sport. So it’s kind of cool. I get to see a lot of the people I used to see when I was younger.

Hoskins: So what was the X Games experience like for you?

Ridgway: This year, it didn’t go so well for me. I got hurt in practice the day before the race. I went to the medical truck and the medics drained my knee and filled it up with Novocaine and I was told I wouldn’t be able to race. I wasn’t able to defend my Gold Medal.

Hoskins: Will you be back next year?

Ridgway: Oh yeah, definitely. I’m not ready to quit yet.

RICKY JAMES In 2005 Ricky James was a top amateur talent on the verge of turning pro when he suffered a crash that left him paralyzed from the chest down. A natural racer at heart, James built a bike that would allow him to keep riding.

James’ impressive accomplishments extend far beyond Moto X racing.

He’s completed a 125 mile stint in the challenging Baja 500, as well as the grueling Ironman Triathlon in Kona, HI. He’s also a top contender in off-road truck racing and attends college classes where he learns 3-D drawing programs.

He hopes to use this knowledge to develop more parts for his bikes, trucks and chair.

Hoskins: What’s it like to be able to take part in the X Games?

James: It’s pretty sweet, you know? Not a lot of people get an opportunity to ride in the X Games. It’s cool that these events are so adaptive and that they’ve been progressing so well.

This year the athletes are split up among amputees and paraplegics, so it’s more fair. It’s amazing that guys with one leg can still ride, but they’re in their own class. We who are sitting down, being strapped in, have a pretty level playing field no matter what level of paraplegic we might be. I think the games are becoming even more fair and that will make for good races.

Hoskins: You’ve competed in the X Games since the year they began, right?

James: I’ve competed the past two years, yeah. The first year I got second overall, behind Chris Ridgway, and got a silver medal. Then, last year, we were told they were going to split up the classes, but they didn’t, and I ended up getting fourth overall. So I didn’t get a medal

last year, but this year I’m looking to be the first paraplegic to take it home. That’s the goal.

Hoskins: Tell me about this course. This is pretty intense.

James: Yeah, it’s pretty insane. It’s the X Games, so they make it even gnarlier than a regular super-cross track. The jumps are a little steeper and the start line’s on a downhill slope. It’s really cool being on the Coliseum, jumping above it and dropping down. The track has a nice mix, which makes it really cool.

Hoskins: What is it like to compete with people who are also forging through their disabilities?

James: It’s pretty rad, you know? Everybody out there in this class has a story – a pretty gnarly story at that – about how they got injured, about why they’re missing a limb, about how they broke their back and became paralyzed. Everybody has a story, and they’ve all overcome some pretty major obstacles in their lives in order to keep riding.

Riding a dirt bike was what I always loved to do. I got hurt on my dirt bike, and now that I can still ride and race, it somehow makes my injury a lot better. I can deal with my disability a lot better knowing I can still do what I really loved to do before I got hurt.

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James: I have some sponsors. It’s hard to market off a dirt bike, but I race offroad trucks as well, and I’m winning in that class. Better guys than me come into the class and twitch. I race with Brian Deegan—not with him, but in the same series, one class below—so it’s more legitimized now and sponsors see value in getting TV time from me and being on a truck. That’s where my sponsors come into play. I get free stuff on my dirt bike as well, but there aren’t too many cash-paying sponsors for a dirt bike. It’s just not very marketable. The only race I do once a year is here at X Games.

Hoskins: Now that the games are over, what are your feelings about the event and your performance? Are you looking forward to coming back again?

Back (l-r): Amy Purdy from Adaptive Action Sports, Todd Thompson, Mike Schultz, Beau Meier, Daniel Gale from Adaptive Action Sports, Front (l-r):Todd Thompson, Samuel “Sampie” Erasmus, Beau Meier.

Hoskins: Can you tell me about the growth that you’ve seen with paraplegic racing in the last couple of years?

James: Paraplegics, more and more, have been figuring out that they can ride. With a bike set up like mine, it’s pretty safe—well, not very safe, but your legs are protected and you have a fighting chance at riding a dirt bike. You’re on there with some good stability. So now there are more people doing it, more guys going faster and faster and doing stuff that I didn’t think was going to be possible five years ago.

I didn’t think I’d be able to get back on the bike. I was thinking about shifter carts and other forms of racing, like four-wheeled racing, while I was lying in the hospital after I’d broken my back.

Once I got out of the hospital, I saw people with disabilities riding street bikes and doing a lot of other crazy things that I’d never seen before. So I kind of combined all the sports and I thought, “There has to be a way to really ride a dirt bike. There just has to be a way.” But I’d never thought I would be jumping or any of that.

Now I’m going back to the same tracks I used to ride on and just jumping, doing serious doubles. I ran the supercross track today, and I’m doubling through some of the rhythm sections that are full-on super-cross track. I never thought I’d be able to do all of this.

Hoskins: Do you get sponsors or is all of this mostly out of pocket?

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James: The event definitely took a huge, positive step forward this year. Daniel from Adaptive Action Sports made two separate classes: the paraplegic class and the amputee class. In the paraplegic class you’re, like me, strapped down. There are a lot of guys out there doing these races now, which is cool, and I’m really stoked.

There’s also an amputee class now. So there are two separate classes. There’s one gate, but there are two separate classes, two separate medals. And that’s the way it should be, because the amputee guys are a lot faster than we are.

As far as my performance is concerned, I was pretty happy with it, up until the point at which I crashed. I’ve had that happen during two different years now, and I could count on one hand how many times I’ve fallen on it—just in corners, just in the pits, just stupid falls. I don’t crash very often, and lately I’ve been pushing it a little too hard, I guess.

At the X Games, I was leading my class, the paraplegics, by a good lead, probably by eight to 10 seconds. I was on the second lap and I was kind of keeping up with the amputee guys, and I thought to myself, just jump everything I’m jumping, do all the doubles I’m doing, nothing more, nothing less, and just ride smart.

But at one corner, the track was really dry—which is kind of typical of X Games: it’s stupid dry. You watch on TV and it just looks like a dust bowl.

Anyway, I just went into a little corner and my front end skipped a little bit and I was leaning into the corner and just washed the front end out while I was in the lead. So I just threw it away. It was in my hands. That’s pretty hard to shake off. But it happened and I was bummed

about it. It was a stupid mistake, but it is what it is.

Hoskins: We spoke to Sampie Erasmus. His story was similar. He was just eyeing you the whole time, and he felt like he just lucked out, unfortunately for you. He said it was wild riding. It’s good that there was a second award and he was very happy to receive it.

James: I had my eye on him, for sure. Before all the interviews, I didn’t even know his name, I just knew he was Sampie from South Africa. The year before, he was riding on my butt. He was pushing me pretty hard last year and was jumping to the inside of me. Luckily I beat him last year, but he was on it. He was fast. He rides well.

I’m kind of sitting in a position now, reevaluating if I’m going to ride too much anymore or just stick to my truck. I’m thinking about whether there might be the potential to keep racing the truck for a long time without getting hurt and actually make money at it. I’ve got to weigh the options. I love dirt bikes, it is my dream to keep riding, but like I said, there are consequences.

We’ll see. Maybe next year we’ll have a rematch.

Hoskins: I heard you’re on the mend right now. What have you been up to these days?

James: Right now it’s pretty tough. I dislocated my shoulder about two weeks ago on my dirt bike, doing a pretty big jump that I probably shouldn’t have been doing – but I just went for it. It’s just a consequence of riding a dirt bike and being strapped to it. If you’re paralyzed and strapped to a dirt bike, there are harsher consequences than there would be for anyone else, and I know that, so I kind of take it easy when I ride. But sometimes I just can’t help it. I just like to go fast.

Anyway, I did a jump and took a digger, and dislocated my shoulder pretty bad. I was out for about 30 hours and I got to the hospital and had it set back in. Now I can’t really move it and it’s really weak. I got in my hours yesterday and everything, though, and I’m going back to the doctor. I’ll probably have to get another surgery on my shoulder. I’ve had two surgeries on that shoulder already. So I hope it will heal up after this. I’m down to one arm and a head. It’s pretty difficult.

Hoskins: When you go through something like this and you contemplate it, do you think, “I’m pushing too hard”? Or is it, “I can’t wait to go next time”?

James: No, right now I’m pretty over it. My life stops when I get hurt like this. It’s not like I’m in huge physical pain, but I’m kind of scared. Hopefully my hand comes back to normal. I’ve been through a lot of injuries like this before, but this is only my second time since my paralysis that I’ve been hurt. My shoulder is basically my weak link. I had surgery on it six months before I broke my back. And then I broke my back and

my shoulder was already weak, and I did the Baja 500 and popped it out and had surgery, so I’ve been through this. It’s as if my life stops. I can’t do anything.

My friends have to come pick me up if I want to go somewhere. My dad has to pick me up, get me out of bed, take me to the shower. I can’t even wheel my own wheelchair right now. The last time I did something like this I was 18, so I’m kind of getting older and realizing that there’s a lot more to these injuries than just breaking my body. I’m 22 now and I’m down to one good arm and a head. I can’t imagine, if I keep going like this, how I’m gonna feel when I’m 30, or even 26.

Hopefully I’ll fix up my race truck.

Hoskins: Is it hard to stay positive through circumstances like these?

James: Yeah. Like I said, I’m not in huge, fearful hell, thinking I might die or I might not come back. But I do have to get surgery to fix all the tendons in my shoulder and it’s like being in prison. You’re straight stuck. It’s just a mental battle right now, trying to keep myself occupied during the day and knowing that in a couple months I’ll be back to my old life, trying to do as much as I can.

Even that’s tough as it is. It’s pretty insane. I’m complaining, but quadriplegics have to deal with this for the rest of their lives. I only have to deal with this for a couple of months. So it gives me a huge respect for a lot of my quadriplegic friends who are in electric wheelchairs.

It’s horrible. It’s straight horrible.

I feel like I have no room to complain right now. I did this to myself. I like riding dirt bikes and I like skydiving and doing extreme stuff. I know the consequences, and some of my quadriplegic friends would love to do the stuff that I do. I don’t want to sound like a complainer, because I know the consequences. I’ve done this to myself. But a lot of people without disabilities will never understand my position, and I’ll never fully understand my quadriplegic friends’ position.

SAMUEL “SAMPIE” ERASMUS South African Samuel “Sampie” Erasmus won gold at this year’s X Games, competing in the Paraplegic Super X Adaptive race. Since the South African Motorsports Council will not allow paraplegic riders to ride on motocross tracks, Erasmus practices on a private track and visits the United States to race.

Erasmus was on the verge of turning pro in 2004 before he crashed and became paralyzed from the chest down.

Four years later Erasmus got back onto a bike, prompted by an interest in Extremity Games and XG Super X Adaptive.

Last year Erasmus took sixth place in XG Adaptive, ABILITY 35

with Ricky James edging him out as the top paraplegic rider. In May of 2010, Erasmus dominated the paraplegic class (Limb-Difference) at Extremity Games.

Hoskins: What is your background with dirt bikes and riding?

Hoskins: Let us know what the race was like for you.

Erasmus: I grew up racing. I started racing when I was 14, raced most of my life in South Africa, and was a pretty good rider. I was the second-fastest junior when I was growing up and I got second place in the championship.

Then I moved up to the seniors—what we call the Aclass over there—and was pretty much a top-five guy.

Erasmus: Practice was great for me. I was just checking on my lines and seeing what kind of situations I could get myself into, and I ended up with the third-fastest qualifying time in the Limb-Difference class. That class is mostly paraplegics—we’re all sit-down, strappeddown riders.

Hoskins: Tell me about riding over there as opposed to riding in America.

So when the race came along, I got a good jump out of the gate. I was right there with the leading pack, and Scott Thompson, the Suzuki rider, he jumped, and kind of bumped me, and I had to take evasive action and ended up next to the track and kind of had to work my way up from the back, but I ended up catching up with the first paraplegic rider in front of me pretty quickly.

That was Jesse Gildea—I ended up racing a little bit with him and I passed him.

Erasmus: Oh, riding in America is so much bigger. The pool of riders is so much better. The competition is better. Everyone’s faster. The tracks are so much better and wider and everything is set up better. Everything is just better, bigger, and faster.

Hoskins: The X Games have got to feel like the Super Bowl.

Erasmus: Oh, this is gnarly, you know? Especially for a paraplegic guy. I’m a T4, complete paraplegic, and just looking at the jump faces that are set up here—it’s hard for us. I look a lot better on an outdoor-style track.

Hoskins: It’s hard to look pretty on that ramp. Tell me a little bit about your injury.

Erasmus: I raced in a national event and was in the sixth round of the nationals in 2004 in South Africa. I hit a jump while coming out of a corner and the jump was a little bumped out. My front wheel hit a bump and my back wheel hit the bump oddly. It shot me forward as the bike kept following me, and the bike landed on me.

The bike crushed me. I broke T4, T5, and T6.

Hoskins: How did you get involved with Adaptive Action Sports?

Erasmus: I saw them on the Internet. I saw that they had a class for us at the X Games in 2008, but I couldn’t make it. But I thought, “Maybe these guys could use me in a competition.” I thought I would be able to do it. I came over and did very well last year. I’ve been doing pretty well this year, too, so I can’t complain.

Hoskins: Sampie, can you just give us a little recap of the X Games and your experience there?

Erasmus: Sure. The whole X Games is an awesome event. I think the way they treat the athletes here is really good, and the way everyone is accommodated is great. I can’t say enough about ESPN and the guy from Adaptive Action Sports for setting that up.

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As far as the racing experience itself, and the practice and stuff like that, it was all really, really good. There were some helpers down on the track for us. Fortunately for me I didn’t crash. I was really lucky.

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Then I saw that Ricky James had built up a fairly big lead by that time, and I decided to push as hard as I could. I pulled a bit of a gap on Jesse, pulled about six or seven seconds on him, and around the next corner I saw that Ricky had a little bit of bad luck and he ended up falling over, so I passed him and then I just thought about keeping it safe and on two wheels, and I ended up winning, which is really, really good.

Hoskins: Tell me what this does for your confidence. Are you looking forward to future races?

Erasmus: Oh, it’s been amazing. Back home in South Africa, I’ve had various magazine interviews and there’s going to be a profile of me with national TV, and then maybe, just maybe, I think I’m going to go on to a televised motorcycle-racing program. But it’s been good back here. People have welcomed me back with open arms. They just realize how big it is for someone from over here to have this kind of moment.

I’ve had lots of bad luck with the races over here, with motor sports in South Africa in general. They don’t want to allow me to race in any races, so it’s really hard for me to build my race sharpness. That’s why I travel to the US every year, for about two or three months, just before the race—just to get back into shape in racing.

It’s a lot different, practicing on your own versus getting back out there and racing with 40 guys. And then to race with the 12 best adaptive racers in the world? That’s a whole different story as well. espn.go.com/action

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Photo by: Nancy Villere - CrushPhotoStudios.com

T

obias Forrest still remembers the day he died.

e

“I was twenty-two, and I was diving off of a waterfall in the Grand Canyon,” Forrest said. “The water was too shallow where I had jumped, so I shattered my fifth vertebrae—and I realized I was going under. I thanked God for my life, and then I died.”

For some, Forrest’s death and resuscitation might qualify as a miracle, but he’d rather chalk the whole thing up to chance. “I just got extremely lucky, in all respects. A lot of strangers came together and got involved in saving my life that day. And I wasn’t quite ready to give up.”

Forrest, known to his friends and family as Toby, is now in his twelfth year of life as a quadriplegic. He shares a house with friends, seeks out work as a Hollywood actor (his credits include Weeds and Six Feet Under), paints, writes poetry, hosts an online radio show, and navigates the usual uncertainties of a creative life with infectious optimism and with a natural, breezy charm.

But it’s as the hard-driving vocalist for Cityzen—a funk rock fusion band that sounds a bit like the Red Hot Chili Peppers, a bit like Andrew Bird, a bit like Pink Floyd and a lot like something all its own—that Forrest seems truly to have come alive again. After all, rock and roll frontman is a role he’d assumed, in the wake of his accident and arduous recovery, he would never be able to play.

“I didn’t see anybody in a wheelchair out there making music,” Forrest said. “So after what had happened to 38

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me, I figured that kind of lifestyle was totally out of the picture. I mean, Christopher Reeve was the only quadriplegic I knew of who was doing much of anything at all, but he was already working from a platform of fame. So what was somebody like me going to do?”

Finding the answer to that question became something of a personal mission for Forrest. Totally dissatisfied with “sitting around and feeling sorry”, the former skier and rock-climber opted to take charge of his new life as a young man with quadriplegia. He underwent rehabilitation at the University of Miami and completed a master’s degree in psychology with every intention of becoming a therapist.

“I had been doing a lot of web design and painting, and those are such solitary things,” Forrest said. “Ultimately, I knew I wanted to be around people. I’m a social person. I wanted to help people who were similar to me. I wanted to be involved.”

After relocating to Los Angeles to undergo locomotor training at UCLA, Forrest dipped his toe into stand-up comedy, linked up with an improvisational troupe, and won a $5,000 scholarship from the Christopher Reeve Foundation for a monologue in which he played an old man with Alzheimer’s. The goal of becoming a psychologist had melted away—Toby Forrest was born to perform.

“I think at some level Toby always knew he wanted to pursue entertainment, and for him it really was that broad,” said Jeff Line, who graduated from Northern Arizona University with Forrest. “He was always willing to try all different avenues, comedy, music, his artwork. He was always driven, always the first guy to take a chance.

Cityzen in 2008. “We all write together, we jam together, and we keep the process open and collaborative. Some people will see one show, come back for a second, and find a different sort of slant or personality. We just like coming up with new takes on our music.”

For now, the band is entirely self-managed, with Forrest printing out stacks of promotional fliers as Cityzen increases its visibility with gigs at bars and clubs across California. “I’m not the sort of guy to outsource stuff,” Forrest said. “And I’m definitely more interested in making a difference than in making a dollar. I want this band to show people what’s really possible. We’re getting out there and we’re keeping our own ship afloat.”

Tobias Forrest, frontman of Cityzen, rocks out at Mugs Away Saloon in Laguna Niguel, California.

And today he’s still very much the same guy I knew.”

During their undergraduate years in college, Line and Forrest had frequently jammed as part of Mos Eisley, a band that featured Forrest on vocals and Line on guitar.

But Line remembers that Forrest’s life-changing injury and subsequent move to Miami forced something of an intermission into the duo’s close friendship.

“We weren’t in contact for three or maybe four years after he moved,” Line said. “I can’t say that I was intentionally out of contact with Toby, or that he was intentionally out of contact with me, but it obviously gets harder when someone lives far away. And he was going through a lot during that time.”

Once Forrest had relocated to Los Angeles, however, fate reconnected the old friends and consequently rekindled their musical past. Line began a course of study at the Musicians’ Institute in Los Angeles, where he quickly sparked a friendship with drummer Nick Woods. And Forrest, even without full use of his diaphragm, decided to reignite his role as a vocal powerhouse.

“I never for a second doubted Toby’s abilities,” Line said. “I knew it was possible his voice wouldn’t be as strong as it had been before the accident, but to sit and listen to this guy, you’d never know he’s a quadriplegic.

He still has an amazing range.”

And so what tentatively began as three friends riffing with each other on the weekends gradually transformed into Cityzen, a group that today features six members and draws upon keyboard, saxophone and electric violin to create melodies that defy easy categorization. The band’s members wouldn’t have it any other way.

“We make it a point not to put some kind of a box around our sound,” said Woods, whose brother Chris joined

With the recent release of the band’s debut album, Invisible Mental Tentacles, it would seem that ship is gaining speed. As the group talks of taking its bold, colorful sounds well outside of the band’s home state, it continues to appear at events for Easter Seals, the United Cerebral Palsy Foundation, and a host of other fundraisers and non-profits. Throughout it all, Cityzen, with its eclectic tunes and its unconventional frontman, is modestly reframing the definition of rock and roll.

“You’ve got to wonder if blind people have an edge,” Forrest said. “They have Ray Charles and Stevie Wonder. Those are blind role models built right into the fabric of music. No one questions them. No one is made uncomfortable by them. These guys are musicians first and are blind second or third. Whatever the disability, I think putting an example out on the stage definitely helps open people’s minds.”

Joe Spangler, a classically trained musician who singlehandedly provides the band’s unique implementation of saxophone and violin, agrees that increased visibility for the group is not just good for Cityzen, it’s good for anyone who might subconsciously place limitations on what is possible with or without a disability.

“I know for a fact Toby has days when he’d probably rather just stay in bed,” Spangler said. “I’m sure there are times when he feels isolated or lonely or upset about his past. But he’s got an amazing way of coping, an amazing grace about it, and that alone is empowering to people. Because what happened to Toby could happen to any of us at any time. What he’s doing is demonstrating that there is still hope when life takes a bad turn.”

Whatever its impact on audiences, the development of Cityzen has provided Forrest with a brand of therapy he could never have expected. “I still compare myself to other people in a room,” he said. “But when I’m on the stage, I suddenly don’t care if I have a quad belly or if I’m hunched over or if I’ve got dishrag hands. I’m singing. That’s the beauty of art, isn’t it? It takes you out of yourself and puts you somewhere else.”

by David Radcliff cityzenband.com ABILITY 39

I

n 1997, Kristi Walker moved to Chicago and found her way to the Judd Goldman Adaptive Sailing Program, a collaborative that helps people with disabilities get into boats, sail on their own and compete in races.

She thought about volunteering. After all, the former New Yorker had practically grown up around a boat, had learned to sail when she was 13, and had competed in regattas through college. So while Lake Michigan isn't exactly the same sailing conditions she knew as a youth, Walker figured one day she mightgo check out the adaptive sailing outfit just down the street from her office.

But Walker never thought she would compete for the organization, let alone win a race and steal headlines.

Due to harsh weather conditions, the sailing season in Chicago is limited to June through September, but the Goldman program makes the most of its time on the water. Sailors in the program culminate their season with the North American Challenge Cup: a 19 year-old, renowned regatta for people with disabilities which this year attracted 36 sailors from 12 states and two other countries. Hosted by the Chicago Yacht Club, the 2010 Challenge Cup made headlines, thanks in large part to a pair of good deeds by Kristi Walker.

In the 2.4mR singlehanded class, Walker followed Paralympic hopeful Nigist Sewnnet the whole race until Sewnnet failed to cross the finish gate and instead went back through the starting gate. The costly error helped

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Walker win the event and landed Sewnet in third.

After the event had concluded, however, the tallied points appeared to be wrong. Walker was listed as having beaten Sewnnet by four points, yet both sailors agreed that wasn't possible considering the tightness of the race.

“For about three or four hours, I thought I had gotten first,” Walker said. “I did see the scores, but at the time the calculation didn't dawn on me because I was so in awe that I had gotten first place.”

After realizing an error had been made, Walker approached the officials. She and Sewnnet reviewed the event, race by race, until the proper point total was calculated. The result secured Sewnnet the victory and dropped Walker to second.

“We're all very proud of her for what she did,” said Peter Goldman, whose father founded the Judd Goldman Adaptive Sailing Program. “We’re very proud of Kristi’ sportsmanship and Corinthian spirit.”

Though Walker admits competition is important to her—she’s not just sailing to feel the wind on her face— she insists that resolving the scoring mistake with integrity was a matter of sportsmanship, she said.

“For me, yes, it's a competition. Absolutely it's a com-

petition, and it would have been great to have gotten first,” Walker said. “But I wouldn't want to get first if the scoring wasn't right. Everybody wants to win, and you're going to do everything you can do within the racing rules of sailing to win. This isn’t a feel-good thing.”

Not every sailor, however, hops aboard a boat to win a race. Walker maintains that sailing should be a fun, invigorating experience, regardless of circumstance. It’s a belief that continues to fuel her involvement in the Judd Goldman program.

“The racing aspect is part of it, yes,” Walker said, “but the main objective of the program which is to bring people in and show them what sailing is all about. No matter what your disability is, when you get in the boat, your disability disappears.”

Walker’s own disabilities, stemming from a brain tumor that was diagnosed in 2001, affect coordination in her left arm and hand. Though time has allowed her to adapt her daily living, a Walker’s condition prevents her from sailing those small boats that filled her younger years on New York waters. A physical therapist by day, Walker has now been sailing competitively with the Judd Goldman organization for six years. The marriage between her limitations and the nature of the program, she says, remains a perfect one.

“I probably would not be sailing here in Chicago if it weren't for the Judd Goldman program,” Walker said.

“Once I found out about it, it was pretty incredible. This whole process was meant to be. If I were more ablebodied, I don't know if I would have pursued sailing here at all, but my disability led me to this program, which led me to the opportunity to sail.”

Like Walker, many participants in the Judd Goldman program enter with a history of sailing for competition or for leisure. Still others never even envisioned they'd be on a boat at all.

“Some of our participants have been in accidents involving water,” Goldman said. “They had spinal cord injuries and diving injuries, and you’d think the last thing they’d want to do is go near water,” Peter Goldman said. “And some are absolutely non-sailors, but they say afterwards, 'I never thought I would be a sailor.

I was never interested in that before.' They never did it before their disease or injury or disability, but now, it's different.”

Long before founding the program that would bear his name, Judd Goldman lived most of his life with a bone infection that left one leg shorter than the other and prevented him from certain physical activities. The disability, however, did not prevent Goldman from sailing. Nicknamed “Old Goat,” Judd Goldman won approximately 25 races and competed well into his mid-seventies.

The Judd Goldman Adaptive Sailing Program began with three boats and a lot of ambition. Today, it is a public-private partner with the Chicago Park District, which provides docking space for the organization's 23 adaptive boats, as well as trained instructors for adaptive sailing. The foundation covers the cost of instructors and boat maintenance as well as other operational expenses.

Individuals can get on and off of the boats by way of a variety of assistive devices, and volunteers stand by to provide a steady hand amid rocky waters. A transfer box allows some sailors to slide from dock to boat, and a lift is available to move a wheelchair user from dock to boat and back. Many Goldman boats are fitted with seats for added stability, as well as with extra-heavy keels that stick out of the boat's bottom for on-water stability.

Walker’s boat of choice provides adaptive foot pedals, which she uses to steer the boat as she uses her right arm to control the lines. The individualized designs for each boat in the Goldman fleet put control in the hands of each sailor, based on that sailor's comfort level. This variety of options stems from Judd Goldman's aim to improve the self-esteem of sailors with disabilities.

“We all have the same ambition and goal,” Peter Goldman said. “People with disabilities often have a certain lack of self-esteem. There are many ways to improve this, but one vehicle is sailing. I don't have a disability and didn't initially realize that sailing could be such a great vehicle for people with disabilities. Sailing provides camaraderie and competitiveness. It moves you away from being a couch potato. This program gets people out and doing things, which I think is fantastic, and the reactions of the sailors tell us how successful this is.”

For Walker, sailing will always be rooted in competition, especially after her experience at this year's North American Challenge Cup. But she is equally motivated by the values of the Judd Goldman, which she strives to promote both with her words and with her actions.

“One of the main interests of the Judd Goldman program is to introduce people to the world of sailing and to develop self-esteem,” Walker said. “We’re opening someone's eyes to things he may not be able to do on land, and I think that's one of the most interesting things about sailing. Once you’re in a boat, you can be in equal competition, on equal footing, with other people. All the different levels of disability can be equalized.”

by Josh Pate Judd Goldman Adaptive Sailing Program juddgoldmansailing.org North American Challenge Cup chicagoyachtclub.org

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ABILITY Photo by: Nancy Villere - CrushPhotoStudios.com

M

ore than 20 years after testing positive with Human Immunodeficiency Virus (HIV), Greg Louganis is living a full and vibrant and healthy life. Though he retired from competitive diving in 1988, the four-time Olympic gold medalist still maintains a rigorous exercise regimen and involves himself in a host of causes. ABILITY’s Chet Cooper visited Louganis at his Malibu home to discuss life with HIV, growing up with dyslexia, and what has recently drawn the athlete back to the water.

Cooper: I want to start by asking you about an issue in the news right now. What are your thoughts about the filibuster of the Don’t Ask, Don’t Tell policy and the Defense Authorization Act? Louganis: You know, the Don’t Ask, Don’t Tell thing is basically encouraging people who are serving our country to lie to each other. That’s just absurd. Gay men and women have been serving this country for years, and with Don’t Ask, Don’t Tell, the whole thing has become a witch hunt through which people are outing other people. That’s ridiculous and it doesn’t serve our country.

It’s also unconstitutional, anyway, so the whole issue is kind of a no-brainer to me. If you take a look at Proposition 8, the Mormon proposition to ban gay marriage, then you can understand where this is stemming from. Religious hate fuels all of that stuff, playing on people’s fears and insecurities and misinformation.

Cooper: What do you think the actual fears are in the— Louganis: It’s the religious right, essentially, who come forward with all the judgment.

People are going to have the beliefs that they have. For myself, personally, my God is a loving God. So I don’t understand how things can be interpreted so hatefully. It’s written in Leviticus, I think, that you’re not supposed to eat rare meat, either. There are a lot of things in the Bible that aren’t relevant to what’s happening in this day and age.

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Cooper: Have you been speaking out publicly about Proposition 8?

Louganis: Yeah. I’m doing a Swim for Equality tomorrow, actually. It’ll be a 1.7 mile swim from Point Dume to Zuma Beach. I volunteered for the swim to help raise awareness and funds.

Cooper: What other awareness campaigns are you involved in?

Louganis: I do a lot of work with Human Rights Campaign. That’s an interesting group. It brings together people who are in a position to effect change, bringing stories to them that they can find relatable. We’re trying to influence people in Congress, in the Senate, so everyone can see a human side of sexuality or of HIV. Ultimately a lot of people want to stay within their comfort zones. Even people in the gay community stay within their comfort zones and don’t venture out, which is not always the smartest course of action. It’s important that people get to know various individuals and fully get to know who they are. So the Humans Rights Campaign means dealing with issues of sexual identity or HIV or whatever type of discrimination or minority that might be affected.

Cooper: What are the topics you usually address in your role as a public speaker?

Louganis: Generally I speak about diversity, although it all depends on what I’m being hired for. I tailor my talk to whatever message the group I’m visiting is interested in: HIV education awareness, diversity, peak performance, a motivational message. I’ve talked to medical groups, for audiences of HIV doctors and members of the HIV community, I’ve talked about compliance and the difficulties that we have in terms of treatment. I share my experience. I talk about depression, dealing with that.

Dyslexia.

Photo by: Nancy Villere - CrushPhotoStudios.com

Cooper: Was your dyslexia a big challenge for you, growing up and in school?

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Louganis: Well, I wasn’t diagnosed as dyslexic until I was a freshman in college. I remember I was actually given “dyslexia” as a vocabulary word in my freshman English class, and that was when I realized I wasn’t all of the things the other students had been calling me: “stupid”, “retard”, “moron”. I wasn’t those things. I was dyslexic.

So then I did go in and get tested. But ultimately you learn coping skills. I wasn’t so severely dyslexic that I couldn’t get through my day, it was just a hurdle in terms of the fact that it made reading and writing much more laborious for me.

Cooper: Does dyslexia pose problems today in your public speaking or acting?

Louganis: When I do public speaking, I have an outline, a list of bullet points.

That’s how I manage my public speaking. I always know the stories, so I just want to make sure that I’m guided in such a way that those stories make sense and have logical beginnings, middles, and ends.

But if somebody were to hand me a script and say, “Read it”, that’s different.

Because of my acting experience, I’ve had to learn how to do that. I can get through those experiences, but they are still struggles. Going in for cold readings is still very stressful. But you do the best you can with the tools you have.

Cooper: I understand that people with HIV today are living longer and longer because of the available medications, but I’ve been told that another phenomena has developed that influences aging, or— Louganis: Yeah. The aging process is more rapid for us. Somebody sent me some information on that, and I know the person’s intent was good, but I really don’t focus on that crap. The situation is what it is. I don’t judge where I am and I don’t study the meds that I’m on. I go to my doctor’s appointment, he gives me the information, and once he puts that file away, I put it away, too.

I don’t live in my disease. As a consequence of that, I probably don’t know as much about the condition as many other people do who are in my situation.

I’m not a doctor. I’m not a researcher. Why bog myself down with trivial stuff that I’m not going to understand?

Cooper: So you’re more about living in the moment than about trying to understand the science?

Louganis: Yeah. The science is fine for the doctors, and we certainly need that information in order to find out where we’ve been and how far we’ve come and potentially where we’re going. But that’s the job of doctors. It’s their passion. It’s not mine. I’m not going to dwell on problems and try to understand stuff that I don’t have a passion for.

Cooper: Then let’s talk about your passion for a bit. At what point did you discover you had a gift for diving?

Louganis: You know, quite honestly, I’ve been trained my entire life. I was dancing and doing acrobatics before I was two years old, performing onstage when I was three. The acrobatics evolved into gymnastics and the gymnastics evolved into diving. So I’ve always had a tremendous kinesthetic awareness.

What was really difficult for me was doing my one-man show in New York. I did that and it was so challenging—being dyslexic, memorizing pages and pages of monologue. The way I’ve always described that experience was as the longest 10-meter dive I’ve ever done. I hit the stage and I honestly didn’t know where I was going to land. But it’s through that rehearsal process that everything gets solidified so you know how to move from point A to B to C. You learn to trust it. You just do it.

Cooper: I heard recently that researchers have been able to prove Einstein’s theories about the relativity of time. I think we’ve all experienced time “slowing down” when we’re really in the moment. When you’re diving does time seem slower?

Louganis: Well, there are different experiences with peak performance. Basically the key elements for peak performance are heart rate, breath rate and body temperature. Those need to be managed to be at the top of your game.

When I’m diving, sometimes my experience seems totally subconscious. I’d remember leaving the board but wouldn’t remember hitting the water. But ABILITY 45

Photo by: Nancy Villere - CrushPhotoStudios.com

I’ve had other experiences in which the dive is more like slow motion: everything is slow, controlled, and kind of unreal. In both of those cases, time doesn’t feel like real time.

Cooper: You were the rose.

Cooper: And you never know when that’s going to happen?

Cooper: What does your sister do now?

Louganis: No. All you can do is prepare yourself and allow your body to do what it was trained to do.

Louganis: I have no idea.

Louganis: Right. I was in there copying everything they were doing.

Cooper: You guys weren’t close?

Cooper: What did your parents do? Anything in particular that drew you into gymnastics?

Louganis: Mom was a housewife and Dad was a certified public accountant.

Louganis: No. Last time I saw her was after my mom passed. My sister didn’t even come to the memorial.

Cooper: Apparently she didn’t like the fact that you were taking classes with her.

Cooper: Well, there you go! (laughter) Louganis: Yes. A real performance background.

Cooper: Did they see something special in you?

Louganis: (laughs) No, they didn’t. Both my sister and I were adopted. My sister is a couple of years older than I am, and basically, my mom didn’t want to see two klutzy kids running around knocking down lamps. So she got my sister dance classes when I was about a year and a half old. I would go to the classes and just sit in the waiting room. I was supposed to be coloring but that was boring to me because I could never stay in the lines, so I used to sneak into the class and imitate what the students were doing. Eventually the teacher said I could stay and we’d find out how much I would learn. That’s how I got involved in acrobatics.

Cooper: So you were a wallflower for a little while, and then the teacher saw that you were doing some things—

Louganis: (laughs) No. Our relationship was always strained. I tried to make things okay because I knew it was difficult for her growing up. She was always known as my older sister, and I knew sometimes that was tough. But we just never— Cooper: Did you or your sister ever look for your biological parents?

Louganis: Not really. I didn’t have that sort of passion to find my biological parents that I guess other people have. I think it depends where you are in life. There was a period of time in which I really wanted to know my biological parents and who they were. And that was a period of my life and I got through that, and I was like, “it’s really not that important”. The only thing you wonder is what kind of health issues the parents might have, whether they were prone to heart disease, to cancer, diabetes— Cooper: Or prone to vote for Don’t Ask, Don’t Tell?

Louganis: Oh, I wasn’t a wallflower. I was in there— 46

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Louganis: (laughs) You never know! My parents could even be trailer trash or something. You never know.

Cooper: When did your parents tell you that you were adopted?

Louganis: I feel like I always knew. I don’t remember a time that I didn’t know that I was adopted, really. My parents were always open and honest about that.

Cooper: How old were you when you first went to the Olympic Games?

Louganis: I was 16. It was in the 1976 Olympic Games in Montreal. I won a silver medal there, but a lot of people misremember it and think that I won gold. I’m like, “Okay, you can give me credit for it.” In 1980 we didn’t go to the games because of the boycott. That was a disappointment for me because I was pretty poised to do well at that Olympic Games. And then I got two golds in ‘84, two golds in ‘88.

Cooper: Is anything new on with your acting career lately?

Louganis: Not right now, no. I did The Little Dog Laughed at Indian Wells Theater, which was a great experience on-stage, with some wonderful actors.

Unfortunately it was a horrible experience off-stage. It was the theater’s first season and they’re really not ready for an Equity house. They don’t even know the Equity rules. So there was a bit of an us-against-them mentality, and really, what we were trying to do was help them and maybe save them money.

Anyway, it was not a very positive experience. But my fiftieth birthday challenge to myself was to be naked on stage, so that was okay.

Cooper: How often do you work out?

Louganis: I try to work out every day. Last week was a little difficult because I was at the United States Aquatics convention and sitting in meetings all day. I didn’t get a whole lot of workouts in while I was there. But when I’m home I try to get a workout in every day.

Today I did spin at 7 o’clock and yoga at 9 o’clock. And tomorrow I’m swimming 1.7 miles, like I mentioned.

Cooper: I think you could have gotten away with saying two miles, but what the heck? Swimming in the ocean is always a little more difficult, right?

Louganis: You know what? I recently got into a wetsuit and into the ocean and I was just floating. I thought, this is a piece of cake. I feel like I’m cheating.

Cooper: But the water’s still cold.

Louganis: The water’s cold. Yes.

Cooper: Will tomorrow be the first time you’ll have done a swim like this?

Louganis: Yeah. And this is also the first swim for California Equality. It’s funny—I went to the kickoff of the fundraiser, which was held at somebody’s house, and I spoke, encouraged people to get involved, swim or donate or whatever they could do.

Each swimmer needed to raise $2,000 in order to swim. When I finished speaking and the time came to ask for donations, this guy raised his hand and said, “I’ll sponsor five swimmers.” So that was $10,000, right there. Two hands went up right away, two volunteers right off the bat. And then nothing, absolutely nothing, and everybody was just sitting around looking at each other.

So I put my own hand up, and then two other hands went up right after mine. I turned to Daniel and I said, “Can I do this?”, thinking, “Am I free that day?” And he goes, “Well, you don’t have anything on the calendar.”

Cooper: But the real question is, can you do it, physically?

Louganis: Right. A week later I read the pamphlet about what the hell they were doing down there. I said, “I volunteered to swim 1.7 miles? I’ve never swum 1.7 miles in my life! What was I thinking?” Then I started to panic. I thought, “When am I going to train?” I don’t have that much training. And now, here we are, it’s tomorrow, and I just—I’m not really panicked about it.

I’m just sort of fatalistic. But it’s not a race. I just have to finish. And the shore’s right there.

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Cooper: Did you read the rules? Did anybody say you can’t use a surfboard?

Louganis: I don’t know! A friend and I did an ocean swim a couple of weeks ago, and that was the first time I’d ever put on a wetsuit. I thought, “Oh, God, this is easy.” I would swim along and turn and find that he was way back there, behind me. So I’d swim back to him, swim out, swim back to him, swim out, tread water, wait for him to catch up. I felt good. We only did about a quarter of the distance, which isn’t all that far, but I probably did about half altogether.

Cooper: You’ll be fine.

Louganis: The lifeguards called out, “Hey, come in to shore!” It was a hot day, a lot of families were out there, and my friend, poor guy, he looked like he was drowning. As we were coming in, the lifeguards motioned us in and said to me, “You’re okay, you’re fine. But your friend—we can’t have that.”

Cooper: Was he wearing a wetsuit?

Louganis: Yeah. It was a really old wetsuit, so I don’t know if it was— Cooper: He needs water wings around his arms.

Louganis: Yeah, the little water wings? [laughs] Yeah.

Cooper: I understand you do some work with dogs. Are you a dog whisperer?

Louganis: God, no. You know what? I am actually very anti-Cesar Millan. The Dog Whisperer show gives the general public permission to abuse their animals under the guise of learning. He’s brutal. He’s horrible. That was just a media phenomenon someone slapped together.

Orchestrated by Jada Pinkett-Smith.

I’m also not a fan of The Humane Society of the United States. They’re the ones who have those just really heart-wrenching commercials of abused and neglected animals and they’re raising all kinds of money, but what that money goes toward actually prohibits the ability to own a pet.

Cooper: I thought there was some new legislation, even locally, about owning more pets? There’s been research that the more pets a home is allowed to own, the fewer animals will be put to sleep. In New York you can own five pets, here in California it’s three, and I think it’s changing to four or five now.

Louganis: That’s the first time I’ve ever heard anything like that. What The Humane Society of the United States is trying to promote is the mandatory spay-neuter, which will make it difficult for people to get a service dog. It’s just a bad idea.

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Cooper: But isn’t the intent good? To have fewer homeless animals?

Louganis: But The Humane Society doesn’t rescue. The Humane Society is the cause of many animals being put down. That’s the problem. It’s heart-wrenching, yes, and they have an incredible campaign, but they don’t rescue animals.

Cooper: What about the Society for the Prevention of Cruelty to Animals?

Louganis: That group actually rescues. But The Humane Society of the United States is just a lobby group. They do not rescue animals. In fact, they’re responsible for more animal deaths than any other organization.

Cooper: What do you think about spaying and neutering animals? At the end of The Price Is Right Bob Barker always used to say, “And don’t forget to spay and neuter your dog.”

Louganis: Bob Barker wasn’t at an influential stage in the passing of legislation. All of my dogs are spayed and neutered except my Hungarian Pumi. There is a possibility that I might breed her, but I don’t think every dog should be bred. Just because a dog has a good temperament doesn’t necessarily mean that it should be bred. But if you have a performance dog and he happens to get injured and can’t compete for six months—say he has to have knee surgery or something—the legislation says he has to be spayed or neutered.

Cooper: That puts a lot of pressure on the dog!

Louganis: The legislation insists all puppies be spayed or neutered by six months. Actually, it might even be less time than that. It’s just bad. I think it’s bad to try and legislate a conscience.

Cooper: On your lawn you have what looks like a training facility for dogs?

Louganis: Some agility training stuff, yeah. I was just recently helping some people, working with their dogs.

Pet training as well as obedience and agility training.

Cooper: I needed that with my ex.

Louganis:(laughs) Sorry. I don’t do kids and wives.

Cooper: How did that feel?

Louganis: Pretty good! My body remembered what to do. If you do something for 20 years it’s pretty much hard-wired. I think I surprised some of the kids.

Cooper: When you hit the water, do you feel all of the speed you’ve picked up on the way down? Is there pain?

Louganis: Yeah! Yeah! It hurts because you’re breaking the surface with the palm of your hand. You’re breaking the surface of the water and creating a bubble, and then when you hit, you hit with such force, it slams your wrists back. So it’s a heavy load on your wrists. But then when you open it up, you’re making that bubble bigger, so that your body can fall into it. That’s how you get in without a splash: you drop into that bubble, and as long as nothing hits that bubble you’ve created, you won’t have any splash.

Cooper: I had no idea.

Louganis: Yeah. You’re essentially creating a bubble with your flat palm entry, and then you can open that bubble up and drop your body into that bubble before the water closes up.

Cooper: What happens if you’re doing a dive that causes you to go into the water feet-first?

Louganis: It’s the same thing. Your feet create a bubble.

Cooper: I noticed you don’t have a diving board on your pool.

Louganis: I have a one-meter platform. In 1996, when the Olympics were in Atlanta, the Australian team came over to my home. I’m friends with Steve Foley, who was coaching the Australian team, and they all came to the pool. We had a barbeque and we dove off of the platform. It was a lot of fun. Now Steve is the high-performance director for USA Diving, and he’s really been the one that’s been instrumental in getting me back into diving.

Now that I’ve been around the diving again, I remember how much fun that was. So I’m getting more involved.

You never lose it, really. eqca.org

Cooper: When was the last time you were on a diving board?

Louganis: This year, actually. It had been 15 years since I’d been around a pool. And that’s the big thing for me: being around a pool. This year, since we ended up going to the senior nationals and junior worlds, I was around a pool a lot. I got on the boards and played around. I even did a couple of dives off the ten-meter platform.

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AIDS - Aquired Immunune Deficiency Syndrome HIV - Human Immunodeficiency Virus t was July of 1981 when the New York Times first reported a flurry of cases of a rare cancer called Kaposi’s Sarcoma. The disease was found in gay men, most of whom lived in New York City and San Francisco. Kaposi’s Sarcoma can affect many different tissues of the body, presenting itself as dark patches when it involves the skin (as seen in Tom Hanks’ Philadelphia when his character begins to wear long sleeves and high collars to hide his lesions).

I

of the fungal infection were reported and about half of the diagnosed patients died. Both Karposi’s Sarcoma and Pneumocystis jirovici (carinii) were previously seen only in patients whose immune systems had been depressed, most often due to having taken immunesuppressive drugs like those used by kidney transplant patients. Doctors soon realized that whatever was causing these conditions in gay men was a terminal disease.

Around the same time as the Kaposi’s Sarcoma outbreak (which is a cancer of blood vessels mainly affecting the skin, mouth and lymph glands), doctors in New York City began to see a large number of gay men with unexplained flu-like symptoms: fevers, chills, and coughs. Most of these new patients had an unusual type of pneumonia caused by a fungus called Pneumocystis jirovici (carinii). This discovery presented an alarming scenario for doctors, since fungal infections are very severe and difficult to treat.

By 1984 a surge of research efforts to discover the cause of these conditions led the Institut Pasteur in France to discover the Human Immunodeficiency Virus (HIV). A year later, Robert Gallo, MD, a virologist at the Institute of Human Virology at the University of Maryland, proved the HIV virus was causing the unusual syndrome.

By that time, however, the world was in the throes of a frightful epidemic known for virtually 100% mortality.

During the first year of the outbreak, about 1,600 cases 52

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As research into HIV grew, the question of the virus’s root cause plagued medical science. Based on research from the 1990s at the University of Alabama, it is now

HIV can be acquired if a person’s blood manages to gain access to the provider’s bloodstream. This might occur by way of a needle, scalpel, or possibly even through a splash of blood in the eye. Blood transfusions in hospitals and intravenous drug abuse on the streets quickly became other methods of transmission of the virus. Sexually active heterosexuals are also not immune.

“Universal precautions” (techniques to reduce the risk of transmission of viruses) are practiced routinely in operating room and in other areas of medical practice. These preemptive measures, combined with a more thorough understanding of how HIV can and cannot be transmitted, have virtually eliminated medical professionals’ reluctance to treat patients with the disease.

Research labs and funding resources worldwide continue to direct their efforts towards discovering treatments, preventions and cure for AIDS. Much of this effort is devoted to developing a vaccine that will prevent the spread of the virus, but such a vaccine won’t help those who already live with HIV and AIDS. HIV is a special type of virus called a “retrovirus”. In the past 20 years, several drugs called “anti-retroviral drugs” have become available. In regions where these drugs can be obtained (typically, more developed parts of the world), combinations of as many as three antiretroviral drugs control the disease in large numbers of AIDS patients.

Unfortunately in underserved areas where the disease runs rampant, treatment is largely unavailable and the death rate for people with the virus remains close to 100%. Further complicating matters, the virus can be transmitted from an infected mother to her fetus, resulting in a child effectively born with AIDS. widely accepted that the virus originated from monkeys.

Various species of monkey are known to transmit a Simian Immunodeficiency Virus (SIV) strikingly similar to HIV. It is believed that the virus mutated so it could cross species—an unusual trait, considering that most diseases in animals cannot be transmitted to man, and vice versa.

How the disease managed to move from monkey to man is debatable, but the most accepted theory is that its transmission derived from the hunting and eating monkeys.

In the late 1980s and early 1990s, I was a neurosurgeonin-training in Washington, DC, a city with a large gay community. Because the HIV virus directly impacts the brain, spinal cord and peripheral nerves (often leading to unusual tumors and abscesses in the brain), neurosurgeons like myself found ourselves performing biopsies of lesions in the brains of gay men with AIDS, in a fervent attempt to diagnose and treat them.

AIDS raised serious concerns for surgeons and other health care professionals. While one cannot contract AIDS from touching or kissing a person with the disease,

As people with HIV manage their health, a new problem arises from successful treatment. How does the “controlled” disease impact the patient as he or she grows older? As there is still no cure for AIDS, the HIV virus is seldom completely eradicated from the body, necessitating people with the condition subscribe to a life-long regimen of medication. It would appear, however, that years of taking these medications—combined with the virus’s impact on the immune system—often take their toll. HIV patients are also more vulnerable to common diseases like diabetes, and diseases associated with aging (such as arthritis, dementia osteoporosis) tend to occur at a younger age.

While the AIDS problem has far from disappeared, what was once a death sentence can now be better viewed as a life sentence.

by E. Thomas Chappell, MD thomaschappellmd.com

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T

he mission of the Department of Justice (DOJ) is to defend the interests of the United States according to the law. What follows are recent DOJ cases on the subject of disability discrimination.

MASSACHUSETTS HOUSING AUTHORITY The DOJ announced that it has reached an agreement resolving its lawsuit against the Fitchburg, Massachusetts Housing Authority and its executive director, Robert W. Hill.

The lawsuit alleged the Fitchburg Housing Authority and Hill violated the Fair Housing Act by adopting and implementing policies that denied tenants with disabilities other than mobility impairments the opportunity to transfer between apartments within Fitchburg’s public housing neighborhoods.

“The Fair Housing Act requires equal access to housing for persons with disabilities,” said Thomas E. Perez, Assistant Attorney General for the Civil Rights Division. “This comprehensive settlement will ensure equal access to housing for all individuals with disabilities, not just those who are substantially limited in the major life activity of walking.”

Under the terms of the settlement, which must still be approved by the US District Court for the District of Massachusetts, the defendants must establish a $65,000 settlement fund to compensate persons who may have been injured by their alleged discriminatory conduct. The settlement also requires employees of the Fitchburg Housing Authority to receive training on the prohibition of disability discrimination under federal fair housing laws.

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Additionally, the Fitchburg Housing Authority must implement non-discrimination and reasonable accommodation policies, and a procedure by which tenants may file a disability discrimination complaint against an employee or agent of the authority.

This case originated when a former resident of the Fitchburg Housing Authority filed a discrimination complaint with the US Department of Housing and Urban Development (HUD). After conducting an investigation, HUD referred the matter to the DOJ and the former resident resolved her claims against the Fitchburg Housing Authority in an out-of-court settlement.

The federal Fair Housing Act prohibits discrimination in housing based on race, color, religion, national origin, sex, disability or familial status.

SETTLEMENT WITH OWNER OF GAS STATIONS RESOLVING ADA CLAIMS A comprehensive settlement has been made under the Americans with Disabilities Act (ADA) with QuikTrip Corporation, a private company that owns and operates more than 550 gas stations, convenience stores, travel centers, and truck stops in the Midwest, South and Southwestern United States. Under the consent decree, which was filed along with a complaint in the US District Court for the District of Nebraska, QuikTrip will create a $1.5 million compensatory damages fund for individuals who were victims of discrimination based on disability, and will also be expected to take various steps to make its stores accessible.

The DOJ initially opened the investigation in response to complaints about inaccessible parking by two

individuals with disabilities in the Omaha, NE area.

The lawsuit filed by the DOJ alleges that the investigation revealed a nationwide pattern and practice of discrimination on the basis of disability. QuikTrip Corporation worked with the DOJ to resolve the matter amicably and without active litigation.

“On July 26, 2010, we will celebrate the 20th anniversary of the ADA,” said Thomas E. Perez, Assistant Attorney General for the Civil Rights Division. “This was a landmark civil rights law that ensures equal access and equal opportunity for individuals with disabilities. Ensuring full and equal access to all businesses open to the public is a top priority, and the Justice Department is committed to vigorous enforcement of the ADA to ensure equal opportunity for individuals with disabilities. Convenience stores and gas stations are a critical part of everyday life in America, and these facilities must afford equal access to individuals with disabilities.”

“QuikTrip has worked cooperatively with the department so we could resolve this case without active litigation,” Perez continued, “and has affirmed its commitment to serving individuals with disabilities by taking the necessary actions to achieve ADA compliance at all of its stores.”

The consent decree reached under Title III of the ADA prohibits discrimination against individuals with disabilities by businesses open to the public, including gas stations, convenience stores, and other retailers.

VENTURA COUNTY A consent decree resolved a lawsuit filed against Ventura County, CA, that alleged the county violated the ADA when it refused to hire a qualified applicant for a children’s social services position because she is deaf and required accommodation. At the time of her application, the applicant had been employed in the same capacity for Los Angeles for more than eight years and had excelled in her position.

Under the terms of the consent decree, approved by Judge Margaret M. Morrow of the US District Court for the Central District of California, Ventura County will train supervisory personnel involved in hiring and promotion decisions to ensure that qualified applicants and employees who are deaf will be provided reasonable accommodations, including sign language interpreters where necessary, to ensure equal employment opportunities. Ventura County has also agreed to pay $45,000 in damages to the complainant.

“The ADA prohibits employers from making hiring decisions based on unfounded assumptions about how a deaf employee will perform the job or about the costs involved in providing reasonable accommodations for a deaf employee,” said Thomas E. Perez, Assistant Attorney General for the Civil Rights Division. “The Civil Rights Division is committed to vigorously enforcing the ADA to ensure equal employment opportunities for all individuals with disabilities, and we are pleased that the county finally agreed to resolve this matter.”

TOWNS, COUNTIES TO ENSURE CIVIC ACCESS Pomfret, Connecticut The DOJ has announced an agreement with the town of Pomfret, CT, to improve access to all aspects of Pomfret civic life for persons with disabilities. The agreement was reached under Project Civic Access (PCA), the DOJ’s wide-ranging initiative to ensure that cities, towns and counties throughout the country comply with the ADA. “I commend public officials in the town of Pomfret for making this important commitment to ensuring equal access to civic life for individuals with disabilities,” said Thomas E. Perez, Assistant Attorney General for the Civil Rights Division. “Civic access is a civil right, and the ADA guarantees to individuals with disabilities the same opportunities to participate in, and access, local government that everyone else enjoys.”

Pomfret, a small town located in northeastern Connecticut, holds an estimated population of 3,798 residents. More than 14 percent of Pomfret’s residents have disabilities and will benefit from the agreement.

“The ADA applies to every state, city, county, town and village throughout the United States, no matter how large or small,” Perez said. “I hope that public officials across this nation will celebrate the 20th anniversary of the ADA by making a renewed commitment to the individuals with disabilities who live in their communities.”

The DOJ’s investigation of the town of Pomfret was initiated when the DOJ received a complaint alleging that the town hall was not accessible to individuals with disabilities. The DOJ will actively monitor the town’s compliance with the new agreement, which will remain in effect for three years or until the department has confirmed that all required actions have been completed.

Pearl River County, Mississippi ABILITY 55

The DOJ announced an agreement with Pearl River County, MS, to improve access to all aspects of civic life for persons with disabilities. The agreement was reached under PCA, the DOJ’s wide-ranging initiative to ensure that cities, towns, and counties throughout the country comply with the ADA. “As we celebrate the 20th anniversary of the Americans with Disabilities Act this month, we applaud Pearl River County for its commitment to bringing its facilities and programs into full compliance with the ADA,” said Thomas E. Perez, Assistant Attorney General for the Civil Rights Division. “Individuals with disabilities will now have improved access to the programs and services offered by the county.”

More than 24 percent of the residents of Pearl River County have disabilities and will benefit from the agreement announced. This agreement was reached under Title II of the ADA, which prohibits discrimination against individuals with disabilities by state and local governments. The DOJ will actively monitor the county’s compliance with the agreement, which will remain in effect for three years or until the department has confirmed that all required actions have been completed.

Following an influx of new residents after Hurricane Katrina, Pearl River County, located in southern Mississippi, was recognized by the Census Bureau as the seventh fastest growing county in the United States. Pearl River County is the fourth largest county in Mississippi.

Wilson County, North Carolina An agreement was made with Wilson County, NC, to improve access to all aspects of civic life for persons with disabilities, the DOJ announced.

The agreement was reached under PCA, the department’s wide-ranging initiative to ensure that cities, towns and counties throughout the country comply with the ADA. “The ADA is 20 years old this month, and I commend Wilson County officials for making this commitment to take the necessary steps to ensure equal access to civic life for the county’s residents with disabilities,” said Thomas E. Perez, Assistant Attorney General for the Civil Rights Division. “The Civil Rights Division is committed to vigorous enforcement of the ADA, and the 20th anniversary of the ADA should be a wake-up call to state and local officials across the country where the ADA’s promises of equal access have not yet been realized.”

Under the announced agreement, Wilson County will take several important steps to improve access for individuals with disabilities.

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“We appreciate the commitment to equal access and ADA compliance made by each of the 180 cities, counties and other government entities that have entered into a Project Civic Access agreement with the Justice Department,” Perez said. “This initiative is a priority for the Civil Rights Division, and we will actively pursue similar commitments from other government officials in the weeks and months ahead.”

Wilson County is located in Eastern North Carolina.

According to census data, the county has approximately 73,814 residents, and more than 27 percent of those residents are individuals with disabilities.

The investigation of Wilson County was initiated in response to a complaint alleging certain of the county’s facilities were not accessible to people with disabilities. The agreement requires most actions be completed within two years. The DOJ will actively monitor compliance with the agreement, which will remain in effect until the department has confirmed that all required actions have been completed.

As part of the PCA initiative, investigators, attorneys and architects with the DOJ survey state and local government facilities, services and programs in communities across the country to identify the modifications needed for compliance with ADA requirements.

The agreements are tailored to address the steps each community must take to improve access. This agreement is the 180th under the PCA initiative.

Title I of the ADA prohibits employers from discriminating against a qualified individual on the basis of disability in regard to job application procedures, the hiring, advancement or discharge of employees, employee compensation, job training and other terms, conditions and privileges of employment.

An employer may not deny employment opportunities to a job applicant or employee who is otherwise qualified if the denial is based on the need to make reasonable accommodations for the applicant or employee.

Information about the Civil Rights Division and the laws it enforces justice.gov/crt Information about the ADA, the Project Civic Access initiative, and the ADA Best Practices Tool Kit for State and Local Governments ada.gov ADA Information Line 800-514-0301 800-514-0383 (TTY)

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’Andre was never that interested in basketball.

Sure, he’d shoot some ball with friends on the playgrounds around his Philadelphia home, but he wasn’t on a team and didn’t follow the sport on television. In many ways, D’Andre fit the mold of many teenagers with asthma: no physical activity. No running.

No jumping. No getting out of breath. No. No. No. And of course, his mother kept eagle-eye watch over him.

“I was afraid,” admitted D’Andre’s mother, Antoinette Daniels, whose son Jayden also has asthma. “If they were playing too hard or running too much, I’m like, ‘You have to slow down,’. I was thinking they may have an asthma attack. So I kind of held them back a little.”

Six years ago, after spending most of his life hearing what his asthma prevented him from doing, D’Andre finally got some good news. Healthy Hoops, a basketball program for youth that improves health through physical activity, had caught his mother’s eye. D’Andre agreed to check out the program. He hasn’t stopped going since.

Now 17, D’Andre still plays ball with the Healthy Hoops program, along with brothers Jamar (10) and Jayden (7). To Daniels, the experience has proven to be a gift to the whole family.

“The kids get a lot out of the program,” Daniels said. “It helps kids who may not even be interested in basketball, or who may not have been interested in sports at all. It’s given them a different outlook on getting into sports and other things.”

More than just a place to play basketball, Healthy Hoops operates as an educational resource for families.

The program began in West Philadelphia in an effort to address the high rates of asthma patients in the region.

But the program’s larger goal quickly emerged: to create a program that not only changes the lives of children affected by asthma but sparks and educational

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transformation for families. To achieve this goal, Healthy Hoops implements a multi-faceted approach.

First, the program focuses on creating a coalition of educators and influential individuals. It partners with local doctors, pulmonary specialists and allergy specialists who are fully-engaged in teaching parents and kids how to maintain a healthy lifestyle. Full-time asthma educators continue to devote their attention to Health Hoops, nurses are involved in physical education courses, and basketball provides an ideal attraction for youth.

Philadelphia is flooded with high-profile coaches at all levels of the game, and the program has developed a history of educating some of these coaches on how to get kids with asthma involved in the Healthy Hoops program and onto the basketball court.

Among the first hurdles in the development of the program, however, was the quick realization that coaches needed to be given a strong base of knowledge about children with asthma.

“We started educating the coaches in the schools about kids with asthma and the coaches would say, ‘Oh we never let them play. We see them. We know they can’t breathe so we keep them on the bench,’” said Maria Pajil Battle, senior vice president of marketing and public affairs of the Keystone Mercy Health Plan. “I said, ‘No! No! No! We can’t do this.’ So we started educating coaches and they became so involved with the program.”

Before long, Heathy Hoops had set up on-site stations and opportunities for kids to get their asthma exams at local clinics before they began to play basketball. In short, the primary goal of Healthy Hoops has always been to help children in the management of their asthma. Participation in the program requires full physicals and health screenings to assess each child’s health status, medications and use. The program also aims to help kids create an action plan for their health and regularly evaluates their results. The outcome is a community of learning

that includes doctors, specialists, basketball coaches, kids and, yes, parents and siblings.

Though she works with Healthy Hoops in an administrative and advisory capacity, Battle says she knows the difficulties of living with asthma, first-hand.

“When I was a kid, I had asthma and we had to get rid of our dog. And my brothers and sisters wanted to get rid of me!” Battle said. “They were kids, and they didn’t really have an understanding of my condition. So now, with Healthy Hoops, we’re helping them understand, helping whole families understand how to get this health concern under control. That’s what we’re really trying to do: educate the entire family, take control, take personal responsibility, and understand the management of taking your drugs.”

Parental participation is a mandatory component for families who engage with the Healthy Hoops program.

While the kids learn to hoop it up on the court, parents go through workshops that encourage health management tips and lifestyle information, both for their children and for themselves. For example, a parent who smokes may know not to do so around her asthmatic child, but might not know that even going outside for a smoke break and returning can damage her child’s lungs and respiratory system.

For Antoinette Daniels, the professional insight Healthy Hoops provides into her sons’ condition has made the program invaluable. “Information helps. It really does,” Daniels said. “A lot of people may only go to the doctor as needed, so they may not get all the information and hear the stories. You get more information going through a program like Healthy Hoops. It’s like a big support group for parents. You may not know a lot of people there, but everyone’s sharing their stories with one another.”

turning their children over to a program might suggest a radical change in lifestyle. While everyone around the kids has told them to slow down and take it easy, the Healthy Hoops program encourages them to become more proactive and more physically taxed.

In an effort to ease that transition, Healthy Hoops often lures heavyweights of the basketball community to engage with its students directly. Since its genesis in Philadelphia, the program has expanded to South Carolina, Kentucky and other parts of Pennsylvania while drawing stars like Sonny Hill and Speedy Jones into community partnerships, as well as former Saint Joseph’s and current Orlando Magic basketball player Jameer Nelson—who himself has asthma.

For Daniels, the program’s efforts to bring in starpower as a method of motivating and connecting with students have gently persuaded parents it’s okay for their kids to run and jump and play basketball.

“Just hearing the stories helps,” Daniels said. “Hearing about athletes who have asthma and hearing about how far they’ve come. They’re athletes and have asthma. So I’m feeling like, ‘Oh, OK. Maybe my child can go out there and do what he wants to.’As long as they’re taking their medication and having that control, then they can do it.”

As Daniels has grown more comfortable with allowing her sons a broader sense of freedom, the Healthy Hoops program continues to inspire and educate other families throughout the country, spreading a message of healthy living and promoting healthy communities.

“Responsibility is a factor in any disease, whether it’s diabetes or high blood pressure,” Battle said. “It’s all about being personally responsible, taking control of your health, understanding your numbers, and ultimately controlling what goes on in your own body.”

by Josh Pate

Granted, it’s rarely easy for parents to feel comfortable

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