Becoming disabled by choice, not chance: ‘Transabled’ people feel like impostors in their fully working bodies

Oh, The Humanities: Part of a series showcasing research at the Congress of the Humanities and Social Sciences this week.

OTTAWA - When he cut off his right arm with a "very sharp power tool," a man who now calls himself One Hand Jason let everyone believe it was an accident.

But he had for months tried different means of cutting and crushing the limb that never quite felt like his own, training himself on first aid so he wouldn't bleed to death, even practicing on animal parts sourced from a butcher.

"My goal was to get the job done with no hope of reconstruction or re-attachment, and I wanted some method that I could actually bring myself to do," he told the body modification website ModBlog.

His goal was to become disabled.

People like Jason have been classified as ''transabled'' - feeling like imposters in their bodies, their arms and legs in full working order.

"We define transability as the desire or the need for a person identified as able-bodied by other people to transform his or her body to obtain a physical impairment," says Alexandre Baril, a Quebec born academic who will present on "transability" at this week's Congress of the Social Sciences and Humanities at the University of Ottawa.

"The person could want to become deaf, blind, amputee, paraplegic. It's a really, really strong desire."

Researchers in Canada are trying to better understand how transabled people think and feel. Clive Baldwin, a Canada Research Chair in Narrative Studies who teaches social work at St. Thomas University in Fredericton, N.B., has interviewed 37 people worldwide who identify as transabled.

Most of them are men. About half are in Germany and Switzerland, but he knows of a few in Canada. Most crave an amputation or paralysis, though he has interviewed one person who wants his penis removed. Another wants to be blind.

Many people, like One Hand Jason, arrange "accidents" to help achieve the goal. One dropped an incredibly heavy concrete block on his legs - an attempt to injure himself so bad an amputation would be necessary. But doctors saved the leg. He limps, but it's not the disability he wanted.

The transabled are very secretive and often keep their desires to themselves, Baldwin says. One 78-year-old man told Baldwin he'd lived with the secret for 60 years and never told his wife.

Some of his study participants do draw parallels to the experience many transgender people express of not feeling like they're in the right body. Baldwin says this disorder is starting to be thought of as a neurological problem with the body's mapping, rather than a mental illness.

"It's a problem for individuals because it's distressing. But lots of things are." He suggests this is just another form of body diversity - like transgenderism - and amputation may help someone achieve similar goals as someone who, say, undergoes cosmetic surgery to look more like who they believe their ideal selves to be.

In the late 1990s, Scottish surgeon Dr. Robert Smith amputated the legs of two patients at their request. While the surgery involved National Health Service staff, each patient paid nearly $6,000 for their procedures.

As the public begins to embrace people who identify as transgender, the trans people within the disability movement are also seeking their due, or at very least a bit of understanding in a public that cannot fathom why anyone would want to be anything other than healthy and mobile.

But this has been met with great resistance in both the disability activist community and in transgender circles, argues Baril, a visiting scholar of feminist, gender and sexuality studies at Wesleyan University in Middletown, Connecticut.

"They tend to see transabled people as dishonest people, people who try to steal resources from the community, people who would be disrespectful by denying or fetishizing or romanticizing disability reality," Baril says, adding people in both transgender and disabled circles tend to make judgmental or prejudicial statements about transabled people. "Each try to distance themselves."

Baril - who is himself disabled and transgender - believes the transgender community distances itself because it has worked very hard to de-pathologize what's known as 'gender dysphoria,' and sought its removal from the Diagnostic and Statistical Manual of Mental Disorders.

Transability is also known as Body Integrity Identity Disorder, which was only just added to the "emerging measures and models" appendix section of the DSM-5 in 2013. Many transabled people want to see it fully added to the psychiatric bible because it might legitimize their experience in the field of medicine, Baril notes.

National Post