Saturday, September 28, 2013

Victoria Arlen Not Paralyzed Enough

At the New York Times, "Swimmer Is Fighting a Ruling: She Is Not Disabled Enough":

Victoria Arlen photo 1e577ee9-8656-454c-9be0-1a2575b9f5f6_zps81002854.jpg
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 was being punished because of her doctor’s belief that there was 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 e-mail, she said: “To have trained so hard this past year and come so far only to be humiliated and targeted by the I.P.C. for reasons unknown baffles me.”

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.

A Difficult Task

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 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 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 said.

The committee often reclassifies athletes and places them into different competition classes, depending on the severity of their impairments. It has declared athletes ineligible before, including 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.
A bureaucratic clusterf-k.

Let the lady compete, for crying out loud. She aint' fakin'.

More at the link.