A Disabled Swimmer’s Dream, a Mother’s Fight

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A Disabled Swimmer’s Dream, a Mother’s Fight

By ALAN SCHWARZ

June 18, 2008

http://www.nytimes.com/2008/06/18/sports/othersports/18swimmer.html?hp

SAN DIEGO — As Kendall swims, his praying-mantis limbs flapping

him forward, something about the water disguises his many maladies:

cerebral palsy, mental retardation, autism and more. Only in a swimming

pool do they dissolve and allow his troubled body and mind to be all but

normal. He is happy, safe and possibly the fastest disabled

breaststroker in the world.

“I’m going to the Paralympics,” told a waiter last week at his

favorite restaurant, speaking of the Olympic Games for disabled athletes

in Beijing this September. He wears his Team USA jersey everywhere,

every day, and sleeps under an American-flag blanket, occasionally with

the medals he has won around his neck. “I’m going to swim for the U.S.A.”

Listening to stumble through his words, his mother, Connie Shaw,

wanted to smile and imagine her son swimming on behalf of his country.

But she couldn’t. For two months, all she has been able to imagine is

his dreams being dashed — perhaps even by the United States itself.

Mrs. Shaw has been left with questions similar to those of other parents

who fight bureaucracies they think are interfering with their disabled

children’s rights and dreams. Was U.S. Paralympics really trying to

protect Kendall when it formally requested that he be rendered

ineligible for the Beijing Games? Or did team officials file the appeal

simply not wanting the distraction of handling a 6-foot-6-inch

19-year-old with an elementary-school mind and a nursery-school temperament?

Kendall is a rare case of an intellectually disabled athlete who

also has the physical disabilities to qualify him for the Paralympics.

But in April, amid confusion about how disabled athletes are classified

both before and during the Games, officials who oversee the American

team on behalf of the United States Olympic Committee formally asked

that be ruled ineligible.

Mrs. Shaw objected and had the request withdrawn, but ever since has

been distraught over what United States team officials continued to

describe to her as the strong possibility her son could be disqualified

after arriving in China. ’s local coach, Don Watkinds, shared her

fear: “Kendall would be uncontrollably enraged, or he might just crawl

into a ball in the corner crying,” he said. “And he might never come out.”

The head of U.S. Paralympics, Charlie Huebner, who lodged the request to

render ineligible, said in several interviews this week that he

was merely “seeking clarification” of ’s status so that his

eligibility would be assessed before Beijing.

But Grevemberg, who handled the matter for the International

Paralympic Committee, said Monday that ’s eligibility for the

Paralympics was never a plausible issue, called the United States’

rationale “far-reaching,” and questioned its legitimacy altogether.

Only on Monday did Connie Shaw learn that United States officials were

mistaken and her son was in no danger. She said she was relieved but

also angry at having been terrified over nothing for two months. But she

didn’t have to fear how it had affected Kendall.

He doesn’t know a thing.

“The one good thing in this whole nightmare,” Mrs. Shaw said, “is that

Kendall doesn’t have any idea of what’s going on.”

A Lifetime of Challenges

At first glance, Kendall could be just a desperately awkward

teenager needing to grow into his body. Only 175 pounds cling to his

lanky frame, and he less walks than lopes. Somewhere between a newborn

foal and a condor, he calmly gobbles three to four stairs in a stride.

But ’s body is more than just gangly. Cerebral palsy leaves him

with gross motor impairment, overactive reflexes and hypotonia, or

virtually no muscle tone. (Look closely, and on many steps his feet

collapse inside his loose sneakers and he walks almost on his ankles.)

Klinefelter’s syndrome keeps his body from producing testosterone.

’s intellectual disabilities and autism are far more noticeable.

He has the attention span of a small child — at one moment during lunch

near his home in La Jolla, he clawed his spoon through his oatmeal,

completely consumed with the process, and the next he was drawn

intensely to the window behind him: “Look at that bird right there! I

want to take him home.” He is terrified of most strangers and unfamiliar

settings, occasionally fleeing rooms or crawling under tables.

Is he excited to be going to Beijing?

“Yeah,” he said at the beachside restaurant.

How is his training going?

“Good. A lot of big waves out there.”

What does he like about swimming?

“I’m eating right now.”

goes to a life-skills school Monday through Friday, learning to

cook and perhaps take care of himself someday. A counselor spends eight

hours a week with him working on mental relaxation exercises and social

interaction. He loves playing golf, occasionally reads the sports pages

and laughs hysterically at “Scooby-Doo.” He alternates between being a

clumsily communicative fifth-grader and an intractable toddler.

loves fetching Gatorade for his fellow swimmers and has been

known to run beside the pool with a teammate’s prosthetic legs so they’d

be handy at the finish. He generally keeps to himself, but he can get on

his training partners’ nerves. Last week, as an 8-year-old boy did

pull-ups, stood about four inches away and drawled, “You’re not

doing it right.”

“Back off, Kendall,” said the boy, half ’s size and less than half

his age. barely budged, staring down through his glasses as the

boy tried to ignore him.

’s problems were only gradually evident to Mrs. Shaw in the months

and years after , her third adopted child, was born in El Paso. He

had endured a difficult delivery and spent his first 10 days in

intensive care because of an infection, but emerged apparently healthy.

Within three months, Mrs. Shaw could tell that something was wrong.

“When you picked him up, he was like a rag doll,” she said. “There just

wasn’t much there. And just the way he moved as he grew — 3 months, 4

months — he did things differently.”

Intense physical and speech therapy for cerebral palsy helped —

wore corrective shoes and ankle braces to learn to walk until he was 5 —

but by then he was exhibiting other eccentricities, particularly

behavioral ones. He was terribly nervous and uncomfortable all the time

— except when he was in water. Only there was he calm. In fact, he so

craved the feeling of being enveloped that when he became hysterical he

would lie in an empty backyard kiddie pool while his parents poured

gallon after gallon of rice over his limbs and chest.

If went to a noisy restaurant, he was known to run out and climb

to the top of a tree. “A 30-foot tree, like a cat hanging on a limb,”

his mother said.

After Mrs. Shaw divorced and moved to San Diego eight years ago,

rode the bus to his new school and refused to get off. When the

principal climbed aboard to cajole him, bolted out the door,

scaled the side of the school and sought refuge on the roof, from which

he threw pebbles at the strangers below.

Although she had two older children of her own and three more by her new

marriage, Mrs. Shaw made her full-time job taking care of ,

driving him to the special-needs programs of conventional schools and

working with his various therapists.

tried to play organized sports with able-bodied children, but he

was hopelessly uncoordinated. He played catcher in T-ball because he

didn’t have to throw, and because the heavy protective equipment felt

good. Play often stopped because his arm and hand were too weak to

support the catcher’s mitt.

“It kept falling off into the dirt,” said his stepfather, Roland Shaw.

“The first time he won a running race, he just kept running and running,

kind of like Forrest Gump. He didn’t really understand that the race was

over. He just kept running. He was so happy.”

Faster and Faster

It was in San Diego that Mrs. Shaw discovered Mr. Watkinds, a swimming

coach who welcomed children with or without disabilities. arrived

with little more than a frenetic dog paddle, but with a sense for the

water that Mr. Watkinds immediately recognized and cultivated.

“I think swimming always suited him because he doesn’t interact with

people in the water — he can isolate himself in his own little world,”

Mr. Watkinds said, watching practice last week at a local

recreation center. “And the flow of the water around his arms and legs,

it just feels good to him — and the faster he goes, the better it feels.”

did go faster and faster. His long and lean body started to slice

through the water like a college crew boat, making up for his muscle

weakness and coordination deficits. His floppy ankles were perfect for

the breaststroke, where the feet are rotated outward for maximum thrust.

After a lifetime of sports failure, he started winning

Paralympic-sanctioned races, beaming from the medal stand with a

self-esteem that had gone untapped his entire life.

Held two weeks after the Olympics in the same host city, the Paralympics

are for athletes with physical disabilities like amputated limbs,

paralysis and cerebral palsy. It is a serious competition for medals and

sponsorship dollars, yet often confused with the Special Olympics — a

far less competitive event for people with intellectual disabilities

like Down syndrome.

always qualified for Paralympic races because of his cerebral

palsy and other physical disabilities. Last year, after a challenge by

another country, he was classified briefly as only intellectually

disabled — therefore ineligible for Paralympic competition — but Mrs.

Shaw appealed and I.P.C. inspectors reclassified him in December as

physically disabled and cleared him for the Paralympics.

was still a long shot to make the United States Paralympic team

before formal trials this April. His fastest meet time in the 100-meter

breaststroke (1 minute 23.6 seconds) had been six seconds slower than

the minimum required for consideration. But he blitzed through the water

in 1:15.8 — winning the race, shocking the field and breaking his

classification’s United States record.

The next day, a ceremony officially named to the United States

Paralympic team and gave him his U.S.A. jersey. wore that jersey

on the plane ride home and — quite out of character — informed strangers

he would swim in China in the Paralympics, even though he really didn’t

know what China was. He showed them his medals. He signed autographs. No

one had ever seen him anywhere near that proud.

The United States Protest

A few weeks later, having to plan for Beijing, Mrs. Shaw telephoned the

U.S. Paralympics office and spoke with the head coach of the swimming

team, O’Neill. Ms. O’Neill told Mrs. Shaw that ’s

classification was again an issue, and that U.S. Paralympics had

approached the I.P.C. to clarify the matter.

That inquiry consisted of a formal, six-page appeal by Mr. Huebner, the

chief of U.S. Paralympics. It opened:

“Mr. Kendall , an athlete who is a citizen of the USA and eligible

to represent the USA in international competition, is inappropriately

classified to compete in International Paralympic Committee (IPC)

swimming competition. Mr. is intellectually disabled. The

intellectual disability classification for swimming (S14) is not

presently recognized by the IPC; nor is an intellectually disabled

swimmer eligible to compete under the IPC Swimming Functional

Classification System.”

The document claimed that “procedural errors” with led to his

incorrect classification as physically disabled. It did not request

explanation for these alleged errors or a review of the procedures.

Under “relief sought,” the appeal requested that the I.P.C. “nullify”

’s physical-disability status and render him ineligible for

Paralympic competition.

“Everything Kendall had worked so hard for, in 10 days, it was all taken

away,” Mrs. Shaw said. “Everything became such a struggle from then on —

against the U.S.O.C. trying to get him ineligible, and the struggle to

keep Kendall from finding out.”

Mr. Huebner said in several interviews this week that he lodged his

appeal to clarify ’s status to ensure would not be subject

to I.P.C. reconsideration or another country’s challenge upon his

arrival. Said Mr. Huebner, “The worst thing that I can see happen to any

athlete, and I’ve seen it in the past, is an athlete at the Games be

told that they have been reclassified and they have to go home.” (Ms.

O’Neill, reached by telephone as well, said she shared Mr. Huebner’s

concerns and supported all the actions taken.)

Mr. Grevemberg, the I.P.C.’s executive director for sport and

international federation relations, said in a telephone interview Monday

that ’s eligibility for the Paralympics was never truly

endangered. He cited rules distributed to the U.S.O.C. early this year

that state how no nation could lodge a protest of ’s eligibility

at the Games, and that the I.P.C. could step in only after a race and

under “exceptional circumstances,” which Mr. Grevemberg said meant an

egregious error in an athlete’s classification.

Mr. Grevemberg added that in his nine years at the I.P.C., he had no

recollection of any nation filing a protest that expressly requested

ineligibility for its own athlete.

“Now the question is, are they acting in the best interest of their

athlete?” Mr. Grevemberg asked. “Are they acting in the best interest of

their sport? They’re the only ones who can express their intention.”

Mr. Huebner and Ms. O’Neill reiterated that their sole intention for

filing the appeal was to seek clarification. They said that ’s

intellectual disabilities and behavioral issues had no bearing on their

decisions. “I don’t even know who Kendall is, to be honest,” Mr.

Huebner said. “I’ve never met him. I don’t know him.”

Questions Linger

’s intellectual and behavioral issues would never be disputed. At

lunch near the beach, he gave glimpses of the feeble desperation that he

can feel even in the most familiar surroundings.

“Mom, can you put butter on my toast?”

“Why don’t you start out and if you get frustrated, I’ll help you.”

“Can you do it?”

“Just try it — you’re getting better all the time.”

“I don’t know how. Mom, please! I’ll pour the syrup while you do the

butter. Mom!”

Mrs. Shaw incurred $25,000 in legal fees trying to get U.S. Paralympics

to drop its appeal and to sort out the matter of her son’s eligibility.

In an interview at her home on June 8, she burst into tears at the

thought of being rendered ineligible in Beijing, which the United

States had told her was very possible. “It could take him under for

life,” she said. “I mean it could make him a whole different person.”

When informed on Monday afternoon that a top I.P.C. official had just

said that her son had never been in any real danger, she said: “I can’t

believe my ears. I just can’t believe it.”

Later, she doubted that U.S. Paralympics had acted out of malice — its

officials devote their working lives to giving opportunities to disabled

athletes — but out of ignorance of at least the rules and maybe more.

“Just because he has other issues, he’s been looked at in a whole

different way that hasn’t been fair,” she said. “He’s been singled out

and isolated because of his autism, because of his intellectual

disability. If Kendall wasn’t autistic, would any of this have happened?

Absolutely not.”

And so Kendall continues to train for the Beijing Paralympics,

oblivious to the rancor that has surrounded him. Every weekday afternoon

between 4 and 6, swims with Coach Don at the recreation center,

dreaming of wearing that Team USA jersey into China and leaving with

another medal around his neck.

Last Monday he jumped off the side of the pool, arms tight to his sides,

as thin as a closed umbrella, and sliced through the water all the way

to the bottom. There, he wiggled his limbs to get himself flat, and lay

on the concrete floor in silence, like Braddock in “The

Graduate,” for a good 10 or 15 seconds.

As usual, ’s inner thoughts remained a mystery. Other swimmers’

ripples then crawled across the surface, leaving him all but invisible.

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