The International Paralympic Committee is unlikely to budge its rules for classifying Paralympic athletes despite an unpopular decision barring a U.S. teen record-holder from this week's world championships because the organization considers her disability not permanent.
There is "no question that Victoria[Arlen] has an impairment at the moment," said Craig Spence, the IPC's director of media and communications. "The question is whether it is deemed a permanent impairment."
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One day in 2006, now 18-year-old Arlen woke up and found it difficult to move her legs. Shortly afterwards, doctors diagnosed her with transverse myelitis, an inflammatory disease that not only left her paralyzed from the waist down, but also in a coma for about two years.
'No question that Victoria has an impairment at the moment. The question is whether it is deemed a permanent impairment.'—Craig Spence, IPC spokesman
Since then, the motivational speaker who encourages others to "rock your disability," rekindled her passion for sport by training relentlessly to become a competitive swimmer. During London's 2012 Paralympic Games, Arlen won a gold medal, setting a world record for the 100-metre freestyle, and snagged three more spots on the podium.
Now, the IPC says she may never compete in Paralympic events again because they determined her paralysis could be temporary, saying Arlen "failed to provide conclusive evidence of a permanent eligible impairment."
The classification process
Only athletes with permanent disabilities may compete in Paralympic events.
"An athlete must have an impairment that leads to a permanent and verifiable activity limitation," according to the IPC's 82-page classification code.
Athletes are evaluated once when they first want to start competing and again after 12 months to track any possible changes, as some disabilities can change over time.
This is not the first time Arlen's eligibility was questioned during the evaluation process. She was disqualified before her four-medal streak at the London Games, and only third-person arbitration helped her back onto the competition roster.
After London, the IPC demanded Arlen provide extensive documentation of her medical history. Five medical experts independently reviewed her file — after her name was stripped from the records — and each one found her condition may be temporary, said Spence, giving the IPC no choice but to ban Arlen from competition.
The IPC denied her appeal.
High-profile swimmer drums up support
Arlen, whose London 2012 accolades earned her an official Victoria Arlen Day in Exeter, N.H., and a meet and greet with U.S. President Barack Obama, is well-known locally and nationally.
When the swimmer's fans learned of the ruling, they quickly urged the IPC to overturn its decision and started an online petition while offering the swimmer their support on social media.
Two New Hampshire senators penned a public letter to the committee outlining how Arlen's athletic achievements help bridge the gap between sports and disabilities.
Senators Jeanne Shaheen and Kelly Ayotte urged the IPC to "re-evaluate the para-swimming classification process so that young athletes are never put through a similar situation."
'Beyond sad' to discourage hope
Arlen, like many of her supporters, seems to disagree with the IPC rule that a disability must be permanent.
"Being penalized for maybe having a glimmer of hope of one day being able to walk again is beyond sad," wrote Arlen on her Facebook page after hearing the IPC's decision. "What message are we giving the world when we don't encourage hope for disabled individuals? I always choose hope and encourage hope no matter the circumstance."
Her disability won't change in the near future, added Arlen.
Every day at practice, staff help Arlen — who wears a catheter — in and out of the pool, said John Ogden, who has coached the teenager for two years.
"Is the girl disabled? The answer is yes. Is the girl in a wheelchair? Yes," he said, saying Arlen has "a sliver of hope of walking" because doctors tend to try to give patients some hope.
Ogden disagrees that a disability should be permanent for a Paralympian to compete, explaining that future technology could potentially disqualify most current Paralympians from racing.
An apparently inclusive organization such as the IPC should not be excluding athletes, he said. Now, he doesn't even know if Arlen will keep training, saying the experience devastated her.
But Spence disagrees that the IPC's ruling sends a negative message.
"We give hope to thousands of athletes and we inspire millions — if not billions — with the performance of our athletes," said Spence, adding that the IPC is bound by the rules.
Some rules 'set in stone'
Arlen is not the only athlete to be disqualified because of this rule.
"This is something that happens from time to time," said Spence, naming various athletes who have faced similar rulings. "The only difference in this case is that it's such a high-profile athlete."
The rule ensures a fair and equal competition for all Paralympians, he said.
Although the classification process is currently under a three-year-long review, it is unlikely that the IPC will ever allow athletes with disabilities that are not considered permanent, said Spence.
Some rules, he said, are "pretty much set in stone."
Ruling leaves swimmers in limbo
If Arlen can provide additional medical records that disprove the IPC's findings, Spence said, she will be allowed to compete at future events.
'She’s being punished for being a great swimmer.'—John Ogden, swim coach
However, that currently leaves the ambitious athlete and any other Paralympians banned under this rule in competitive limbo — barred from Paralympic events and unable to compete anywhere else. When asked for suggestions of other competitive swim events for Arlen, Spence said he could not comment on that.
The ban also affects aspiring athletes, said Ogden, who trains several other disabled swimmers and now fears allowing his faster recruits to advance to international competition.
Ogden believes the IPC is only enforcing this rule to prevent a fast swimmer from competing.
"She’s being punished for being a great swimmer," he said, adding the same thing could happen to his other swimmers if they become high-profile athletes.