Not disabled enough? A Paralympian tells her story

Sarah Lyall / New York Times News Service /

Published Sep 28, 2013 at 05:00AM / Updated Jan 16, 2014 at 01:54PM

EXETER, N.H. — Racked by sudden spasms in her shoulders, back and hands — the things she most relies upon to offset her paralyzed legs — the American swimmer Victoria Arlen failed to qualify for the final in the 100-meter breaststroke at the Paralympics last summer. But she persevered in the freestyle, going on to become one of the competition's breakout stars. When Arlen returned home to New Hampshire with four medals and a world record, Exeter threw her a parade.

But Arlen's glittering Paralympic career is now in jeopardy. This summer, she became enmeshed in a dispute with the International Paralympic Committee over an issue fundamental to her identity and to the complicated, often ambiguous science behind Paralympic competition: whether she is disabled enough even to qualify as a competitor. Days before she was due to swim in the world championships in Montreal in August, she was ruled ineligible because, the committee declared, she had “failed to provide conclusive evidence of a permanent eligible impairment.”

Arlen, 19, spent three years in a vegetative state because of an autoimmune disorder and woke in 2010 with paralyzed legs and other symptoms of the neurological condition transverse myelitis.

She said she is being punished because of her doctor's belief that there is a chance that her condition might improve.

“Being penalized for maybe having a glimmer of hope of one day being able to walk again is beyond sad,” Arlen said in an interview at home. In a follow-up email, she said: “To have trained so hard this past year and come so far only to be humiliated and targeted by the IPC for reasons unknown baffles me.”

Confirmation

For its part, the committee says it had no choice. “According to the rules, athletes have to provide evidence of permanent impairment to compete in the Paralympics, and we do not have satisfactory confirmation of that,” said Peter Van de Vliet, the committee's medical and scientific director.

Classifying disabled athletes — sorting them into classes according to the type and severity of their disabilities — is immensely complex, often subjective and among the toughest tasks the Paralympic committee faces. Some cases, likes those involving congenital limb deformity, are straightforward. But others, like eye conditions or neurological illnesses with fluctuating multiple symptoms like the one afflicting Arlen, are not.

“If you're classifying an amputee, either they've got a leg or they haven't, and in 12 months, they still won't have a leg,” Van de Vliet said. “But when you get to these types of wheelchair athletes, it gets tricky.”

Officials are not suggesting that Arlen is lying, but the Paralympics is becoming increasingly competitive, and there are many cases of athletes exaggerating or faking disabilities. The committee is still haunted by the unhappy saga of Monique van der Vorst of the Netherlands, who won two silver medals in handcycling at the Beijing 2008 Paralympics. She was paralyzed when she competed, apparently having muscular dystrophy. But two years later, after 13 years in a wheelchair, she walked again. She was given a new diagnosis: conversion disorder, a psychiatric condition in which patients suffer inexplicable neurological symptoms.

The committee allowed van der Vorst to keep her medals, ruling that she had not deliberately misled them. But later it emerged that perhaps she had. Reports surfaced in which even van der Vorst said there had been times when she could stand and walk while competing as a Paralympian.

“What would be the reaction of competitors who had raced Victoria if, in a few years, she was able to walk?” Van de Vliet asked.

The committee often reclassifies athletes and places them into different competition classes, depending on the severity of their impairments. And it has declared athletes ineligible before, some who have simply misinterpreted the rules. Recently, Van de Vliet said, a Jamaican competitor showed up at a competition with a note from his optician saying, “this man has a visual impairment, but when he wears his glasses, everything's fine.”

The committee sent him home. Van de Vliet said, “It was a particularly sad case.”

Arlen's situation is different, in part because she is such a high-profile athlete. After the International Paralympic Committee ruled her ineligible, her case became a cause célèbre, with sympathetic reports on “Good Morning America” and other outlets. New Hampshire's governor and two senators publicly criticized the committee's ruling.

Photogenic, poised, articulate, bitterly disappointed, a television natural (she also models and works as a motivational speaker), Arlen makes a formidable opponent for the Paralympic committee. It is impossible to hear her story — about being a star child athlete who suddenly grew weaker and weaker and sicker and sicker until she became incapacitated, about her years in a vegetative state and her family's search for medical answers, about how she woke and had to relearn to talk, read and eat, about how she resolved to be a Paralympic swimmer, about her triumph last summer — without feeling sympathetic.

“She was brought into the Paralympic movement by people who knew about it and told her she could be good at it, and she trained and did everything she was asked to do,” Arlen's coach, John Ogden, said in an interview. “She has been emotionally scarred and traumatized by this. I am so disappointed in the Paralympic movement right now, I can't even tell you.” But it is hard to ignore the committee's arguments that the matter is far from simple.

“We take no pleasure in telling an athlete they're not eligible to compete,” Van de Vliet said. “There's no question that she's a great athlete, and no question that she's not faking. But not every illness constitutes an entry into the Paralympics. And every sport has its rules, and we were provided with medical evidence that does not conform to the diagnosis of a permanent impairment.” The questions over Arlen's eligibility began before the Olympics last summer, when someone anonymously sent several videos to the IPC of Arlen in competition and in television reports. They seemed to indicate, officials said, that there was muscular activity in Arlen's lower limbs.

One of the videos showed her doing what appeared to be tumble turns, in which swimmers push off from the side of the pool between laps with their legs. An official raised questions on whether she should be able to do tumble turns.

But Arlen cannot, Ogden said: “It's an optical illusion.” He says that she has perfected a way of pushing off with her hands, but that she does it so deftly it looks as if she is using her legs. “We devised a flip turn where she can flip and put one hand out,” he said. “She can turn as well as some of my able-bodied kids.”

The Paralympic committee was mulling over Arlen's case when she arrived in London last summer. After seeing her briefly, it delivered its verdict: She was ineligible. But the U.S. Olympic Committee protested, and an independent arbitrator ruled that she should be properly classified and allowed to race. She was then subject to a grueling physical assessment, in and out of the water, over about three hours, in which among other things she was asked repeatedly to demonstrate that she could not move her legs. “The USOC kept telling the IPC guy, 'This is abusive,'” Arlen's father, Larry, said.

In the end, Arlen competed under what is known as review status, meaning she would have to be re-evaluated within a year.

Arlen had a triumphant Paralympics, winning a gold medal and three silvers in individual and relay events in the freestyle, and setting a world record in her class in the 100-meter race.

She returned home a celebrity; among other things, she threw the first pitch at a Boston Red Sox game and dropped the first puck at a Boston Bruins match. Then she set her sights on the next big competition — the 2013 world championships — training 15 to 20 hours a week while also finishing high school.

Further diagnosis

Ogden, her coach, said that there is no question about her disability. “It's not even a little bit ambiguous — she can't walk,” he said. “I run the biggest Y swim team in the country, with 38 coaches and 500 kids, and there's no way she fakes anything.”

The committee and Arlen dispute what happened next. Arlen said she begged for a chance to be reclassified well in advance of the championships and sent more than 75 pages of medical and hospital records. The committee said it asked repeatedly for documentation beyond what she provided, but none was forthcoming until late June. That was after her meeting with Dr. Michael Levy, who reviewed Arlen's case and gave her a 40-minute preliminary examination at Johns Hopkins University.

The Arlens said they consulted Levy not because of any classification questions but because he is an expert in transverse myelitis. Levy confirmed the diagnosis, they said, and added a second one, of an autoimmune disorder called acute disseminated encephalomyelitis, or ADEM.

The Arlens said that that helped explain many of Victoria's symptoms, including her chronic stomach pain, her seizures, her inability to swallow and her three-year lapse in and out of consciousness.

But Van de Vliet said that Levy's medical report was reviewed separately by five doctors with experience in Paralympic classification, and that it raised red flags. The five all concluded, he said, that there were questions over the three main criteria used for Paralympic classification: whether Arlen's diagnosis was accurate, how severe her impairment was and whether her condition was permanent.

Among other things, Van de Vliet said, “the report said there were motor tendon reflexes in the legs” that seemed inconsistent with “an absence of muscular activity.” He added that Levy had set out “a relatively detailed plan of rehabilitation” that might help Arlen walk again one day, suggesting that her condition might improve.

The Arlens said the committee twisted Levy's words. His report, they said, found that she had “some movement of her legs” but “no voluntary control.”

“Victoria can't control her legs. She is in a wheelchair and when she swims, she does not kick — bottom line,” Jacqueline Arlen, Victoria's mother, said in an email.

But Van de Vliet said the committee contacted Levy to ask follow-up questions and had been left unsatisfied. “The million-dollar question is, Is this a permanent impairment?” he said. “The rules stipulate that only people with permanent impairments can compete, and the one thing the doctor couldn't explain was whether this was a permanent impairment.”

Neither the Arlens nor the committee would make the medical report available. Reached at work, Levy said he had been told by Johns Hopkins that he could not comment. Jacqueline Arlen, though, quoted Levy as telling the committee that Victoria had “come to my clinic for a plan, not a second opinion regarding her eligibility to swim in a competition; it is my duty to help her try to recover her maximum potential.”

Jacqueline Arlen said he added: “I did not mean to imply that Ms. Arlen would be able to walk quickly. I also did not mean to imply that without a rehabilitation program, Ms. Arlen will be able to recover on her own.”

Arlen was in Montreal and ready to compete when the committee ruled her ineligible. It denied her request to appeal, and she had to go home. Naturally optimistic, she has been unable to get into the pool again and is not sure about her future as a Paralympic swimmer.

She has good and bad days. The nerve pain and muscle spasms are increasing, she says, and her hands are clenching more often. “That was the crazy thing about all this,” Arlen said. “My condition has gotten worse since London, and yet I wasn't allowed to compete.”

Her parents are beside themselves. “It's cruel and heartbreaking,” her mother said. “Hasn't she been hurt enough? I'm done having my child hurt.”

Larry Arlen said when he heard the IPC's verdict in Montreal, “I had the same feelings in my heart as I had when I was in the intensive care unit with her, wondering whether my daughter was going to live or die.”

Arlen said that she would be thrilled if her condition turned out to be temporary. “I would love more than anything to be running around, but that's not a reality,” she said.

But the committee is standing by its decision. “If we ever receive sufficient medical evidence that shows she has a permanent impairment, she would be able to compete again,” Van de Vliet said. “The door is open.”