Greg Louganis Issue - ABILITY Magazine

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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ABILITY 5

C O N T E N T S
8 ASHLEY’S COLUMN — Bringing Home the Gold
10 SEN. TOM HARKIN — Where Are the Jobs?
12 RENNE GARDNER — Running With My Son
18 THE PEARLS — Stories That Demand to Be Heard
20 AMY EDWARDS — A Living Special Effect
24 ADAPTIVE SPORTS — Getting Back in the Game
30 X GAMES UNCOVERED — Taking the Inside Track
38 CITYZEN — A Whole New Voice in Rock and Roll
40 ADAPTIVE SAILING — Finding Your Sea Legs
42 GREG LOUGANIS — Still Diving Into Life
52 HIV AND AIDS — Battling a Fatal Disease
54 BAD BOYS — Cracking Down on Discrimination
58 HEALTHY HOOPS — Take Your Best Shot
60 CROSSWORD PUZZLE
63 EVENTS & CONFERENCES
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© 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

It 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!
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
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(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!
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.
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
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
ABILITY 9

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 ABILITY
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.
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

He’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
12 ABILITY
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.
ABILITY 13

14 ABILITY
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.

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

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 ABILITY
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.
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

ABILITY 17

Shortly 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.
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 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 ABILITY
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.”
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.
“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.”
The Pearls private event will be held on
June 4, 2011, in Studio City, CA
themprojects.com
by David Radcliff
ABILITY 19

Avisual 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 ABILITY
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.
Radcliff: You do have some hearing, though, is that right?
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.
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: 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
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: Because you’re deaf?
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: 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?
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

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 ABILITY
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
Amy Edwards with Apolo

ABILITY 23

24 ABILITY

An 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
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.
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 ABILITY
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) 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.
28 ABILITY
“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.’”
adacs.org
(l-r) Evan Strong and Robbie
Owens at Element YMCA Skate
Camp in California.
by Stan Hoskins

30 ABILITY

Driven 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
Photos by Bower Motorsports Media
ABILITY 31

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 ABILITY
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.
ABILITY 33

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?
34 ABILITY
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?
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?
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.
Hoskins: Tell me about riding over there as opposed to
riding in America.
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.
36 ABILITY
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.
Hoskins: Let us know what the race was like for you.
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.
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.
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

ABILITY 37

Tobias Forrest still remembers the day he died.
“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 ABILITY
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.
Photo by: Nancy Villere - CrushPhotoStudios.com

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
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.”
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.”
cityzenband.com
by David Radcliff
ABILITY 39

In 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
40 ABILITY
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.”
Judd Goldman Adaptive Sailing Program
juddgoldmansailing.org
North American Challenge Cup
chicagoyachtclub.org
by Josh Pate
ABILITY 41

Photo by: Nancy Villere - CrushPhotoStudios.com
42 ABILITY

More 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. ABIL-
ITY’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.
ABILITY 43

Photo by: Nancy Villere - CrushPhotoStudios.com
44 ABILITY
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.
Cooper: Was your dyslexia a big challenge for you,
growing up and in school?
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: And you never know when that’s going to happen?
Louganis: No. All you can do is prepare yourself and
allow your body to do what it was trained to do.
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.
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: Oh, I wasn’t a wallflower. I was in there—
46 ABILITY
Cooper: You were the rose.
Louganis: Right. I was in there copying everything they
were doing.
Cooper: What does your sister do now?
Louganis: I have no idea.
Cooper: You guys weren’t close?
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.
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: (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.
ABILITY 49

50 ABILITY
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.

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: 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.
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
ABILITY 51

AIDS - Aquired Immunune Deficiency Syndrome
HIV - Human Immunodeficiency Virus
It 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).
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.
During the first year of the outbreak, about 1,600 cases
52 ABILITY
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.
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.
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

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,
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.
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.
thomaschappellmd.com
by E. Thomas Chappell, MD
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The 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
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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)

ABILITY 57

D’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
58 ABILITY
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.”
Granted, it’s rarely easy for parents to feel comfortable
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.”
healthyhoopsprogram.com
by Josh Pate
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11 12 13 14
15 16
17 18 19 20 21
22 23 24
25 26 27 28 29 30 31
32 33 34 35
36 37 38 39
40 41
42 43 44 45 46 47
48 49 50 51 52 53
54 55 56 57
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ACROSS
1 Battle through hardship (2 words)
9 Can you dig it?
11 War vets that were injured or disabled (goes with 62
across)
13 Coach
15 The facts of life?
16 One billion years or so
17 HD is the new version
18 Made points at the Paralympics
20 Skating surface
22 “Beauty and the ____”
23 ____ 40 rock group
25 “Scary Movie” star, Regina ____, who is an advocate
for public awareness of scleroderma
28 80’s Sci-Fi blockbuster
29 Dreams
32 “___ an interesting offer for you.....”
34 Peyton overshadowed him in their last NFL game
35 Organization for health issues
36 One of the oldest living organisms on the planet
37 “Matrix” main man
38 A little down time
40 Oakland baseball guys
41 Higher
42 Actress with Down Syndrome, ____ Friedman
46 Committee on the Rights of Persons with Disabilities,
for short
49 3rd nation in the 2008 Summer Paralympic Games
50 Foundation
54 Syndicated radio program produced by NPR and
underwritten by ABILITY Magazine (3 words)
58 That is
59 High tech speakers
61 Lampoons
62 See 11 across
DOWN
1 Elite group
2 Food
3 List for the day (2 words)
4 “We __ the world,” song and charity single
5 Devoted to an ideal
6 Holds a concert, for example
7 Fight for your rights (goes with 33 down)
8 Britain’s most successful Paralympian, Baroness ____
Grey-Thompson
10 Honest and straight
12 Writer’s point!
14 Sushi option
17 Much logo’d garment
18 Poker call
19 Operating system, abbr.
21 Theater signal
24 E-bay action
26 5th __, NY
27 Trifled with (2 words)
30 Incurred (2 words)
31 Thimbleful
33 See 7 down
39 Spring month, for short
43 “Obviously!”
44 Skilful
45 Smarter
47 Takes a chance
48 “Dock of the Bay” singer
51 ____ odds?
52 “Wall Street” actor, LaBeouf
53 Quiet!
55 Me, me, me viewpoint
56 Jedi knight, first name
57 Romance
60 Older than Jr
answers on page 62
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F I G H T A D V E R S I T Y
E R O R E N T A T
W O U N D E D T R A I N E R
B I O I E O N N U
T V B S C O R E D I C E
S B E A S T U B U
H A L L E T A S P I R E S
I V E Y E L I F D A I
R E D W O O D N E O N A P
T O U A S R U P
A N D R E A W C P R D
O U S B A S I S A
T H E H E A L T H S H O W R
I G L E I E B O S E
S P O O F S W A R R I O R S
A N S W E R S

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E v e n t s & C o n f e r e n c e s
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