What Happens If You're Not "Disabled Enough" For the Paralympics?

The Paralympic Games are an incredible display of athletic performance and grit, a time when disabled athletes get to bring new eyes to their parasports. However, thanks to classification systems that many athletes claim are exclusionary or impractical, there are whole swaths of para athletes who cannot qualify to compete on an international stage. These disabled athletes have essentially been deemed not disabled enough to participate in the Paralympics. In a personal essay, Sam de Leve, a swimmer with Ehlers-Danlos syndrome, describes it as being "left in a limbo where I am too disabled to compete against able swimmers and prohibited from competing against my peers."

For the athletes who fall into that category, it can be a devastating outcome. Danielle Brown, a two-time Paralympic gold medalist in archery from the United Kingdom described the experience of being shut out of the international level of competition thanks to changing classification criteria after the 2012 Paralympics in London as spurring an "identity crisis."

"You're an athlete and then, overnight, you're not," she tells PS. "But then you're also a disabled person who's not disabled enough and that just really messed with my head. You start questioning yourself like, 'Am I actually making it up?'"

Disability advocates and para athletes believe that the International Paralympic Committee (IPC) needs to overhaul the way they classify certain kinds of athletes. As it currently stands, there are many conditions that are automatically excluded from qualification and many of the athletes who are impacted have less visible disabilities, or disabling conditions that are much harder to pin down when it comes to their cause. Some advocates say that this is due to deeply ingrained ableism within the IPC, as well as a desire to cater to the able-bodied gaze in order to market parasports as something that a mainstream audience wants to watch. In order to understand the issue better, we looked into the IPC's classifications, how they came to be, and what change para athletes want to see happen.

Paralympic classification involves grouping athletes by the degree to which they are impaired by their impairment or disability, and there are ten categories of impairment that are eligible according to the IPC rules. Those categories include things like impaired muscle power, limb deficiency, vision impairment, ataxia (impaired coordination), and hypertonia (muscle overactivity that results in stiff or decreased movement), among others. Athletes must not only have one of the qualifying types of impairment, but then must meet the level of impairment to qualify, as well. On top of that, classification is sport specific, because different sports require different activities. However, there is also a list of disqualifying conditions, meaning that if one of those conditions is the cause of your impairment or disability, you cannot qualify for the Paralympics.

"The focus in the Paralympic classification system is not just on how you're affected, but also on why you are affected," explains Eliana Wallack, a former member of the US national paraclimbing team and an expert on parasport classification. "They place value on knowing what the underlying cause of your disability is, rather than just the actual measurable impact on you."

These classification criteria were put into place following the London Games in 2012, causing huge numbers of athletes who had previously qualified to be excluded from their sport, including Brown. Brown has complex regional pain syndrome (a condition that involves a malfunction of the nervous system and causes chronic pain and inflammation) which was added to the list of disqualifying conditions. World Archery, the international governing body of para archery, deemed Brown ineligible to compete at the international level any longer. Wallack also has Ehlers Danlos Syndrome, a connective tissue disorder, which is on the list of non-qualifying conditions.

"The big thing is that [the criteria] are not taken on the merits of the case," says Brown, who appealed the decision in 2014 but lost. "So anybody with CRPS and other conditions are just automatically excluded rather than [looking at] how it actually physically impacts you." Brown points out that she cannot carry a cup of tea or walk up a single step due to the effects of her CRPS, but none of that is taken into consideration. Her eligibility is being determined simply because the cause of her disability is a disqualifying condition. Brown's entire life was upended as a result of her being ruled ineligible. She had been receiving a government stipend for eight years as a member of the UK national team, allowing her to train full-time. After the 2012 guidelines classification were put into place, she was given a three-month severance, leaving her with bills and a mortgage to pay and no alternate source of income or immediate plan in place for an abrupt career change.

In order to understand why these exclusionary rules exist today, it's necessary to look back on the past. "The Paralympic movement is really disconnected from the modern experience of disability," says Wallack. That's because the Paralympic movement began following World War II and was born at a hospital for war veterans. The original para athletes were wheelchair users, many of whom had suffered spinal cord injuries during the war.

"It really plays into this idea of people with disabilities being people who have had massive traumatic changes in functioning, the way someone coming back from war would have," explains Wallack. "That's built into a large part of the Paralympic movement the same way there's a lot of really messed up inspiration porn baked into the Paralympic movement."

As the parasports expanded to include athletes with amputations, visual impairments, cerebral palsy, and more, classification followed a model based on medical diagnosis rather than levels of impairment or functioning. That changed ahead of the Barcelona Games in 1992, with the formation of the IPC to govern parasports at the international level and the development of a more functional sports-related approach to classification.

The 2012 London Games were a huge turning point for the Paralympics and are largely considered to be the most successful Paralympics in history, making them a viable financial product for perhaps the first time and drawing unprecedented levels of media attention and sponsorship. The Games were broadcast in over 100 countries, 2.7 million spectators attended the events, and there were over $70 million in ticket sales. Classification criteria evolved once again following those games, implementing the current strategy that relies on ten buckets of impairments and disqualifying huge group of already-existing Paralympic athletes. Those athletes often have less visible disabilities, particularly to an audience that might be tuning in from home.

"The way a Paralympic athlete's disability is classified is supposed to level the playing field," Peter Brooks, a two-time Paralympic gold medalist in cycling, wrote for ABC News Australia. "Athletes are supposed to be grouped together based on how their impairment affects performance in their sport. But the system is not working as it should."

Brooks and other advocates like Wallack believe this is due to the focus on appealing to at-home viewership from a largely able-bodied audience, rather than centering the disability community's needs and perspective.

"In order to become and stay Paralympic sports, national federations get a lot of pressure to be monetizable and televisable," Wallack says. "So this isn't necessarily about the experience of the athletes, it's about how does the movement make money off of this sporting event? What do people want to watch?" The answer to that question, Wallack argues, depends of what these governing bodies believe able-bodied audiences want to see when they tune into a parasport event, which are visibly disabled athletes performing incredible feats of athleticism.

Para athletes like Wallack, Brown, and de Leve are advocating for reevaluation of the IPC qualifications — and encouraging others to do the same.

De Leve, in particular, takes time in her personal essay to encourage aspiring paralympians and allies to reach out to their national health condition organizations (e.g. The Ehlers-Danlos Society, the Lupus Foundation of America, National Organization for Rare Disorders) to tell them that Paralympic eligibility should be an organizational advocacy priority. "If you have a different disability type that is also Paralympic-ineligible, please speak out and offer information for your own national or international disability organization so that we can work in solidarity for the inclusion of as many disabilities as possible into the Paralympic movement," de Leve writes.

Brown also underscores the importance of para athletes telling their stories, whether it be on personal social media or to media outlets, in order to increase visibility and awareness. Now a children's book author who wants to inspire young girls, Brown hopes that sharing her story will have an impact on the next generation of para athletes. "Sport helped me get back on track, build my confidence, and find an outlet that I could put my passion and my energy into. It's such a shame that so many young people are being denied that same opportunity," Brown says.

Frankie de la Cretaz is a coauthor of "Hail Mary: The Rise and Fall of the National Women's Football League." In addition to PS, their writing has been featured in The New York Times, Sports Illustrated, Rolling Stone, and more.