Transability and the Downfall of Society

The social web has been all aflutter for the past week, stirred up by a viral National Post article focused on the concept transability — people who believe they should be disabled and, in extreme cases, disable themselves to live out their preferred identity. Transability, more appropriately (in my opinion) known as Body Integrity Identity Disorder (BIID), is not new — some studies on the topic go back well into the 1980s. BIID is also not new to the media either, as there’s a fascinating documentary about the subject from over a decade ago titled Whole (2003) which loosely inspired the odd Nick Stahl film, Quid Pro Quo (2008). The rise of BIID to mainstream frame, however, seems tethered to the transgendered movement, with many conservatives deploying this article as some sort of slippery slope warning that if you start letting people reassign their gender than logically the next step is people will begin demanding disabilities. The horror! Of course, things are not quite as simple as they might seem and this blog post hopes to explore some random thoughts I’ve been trying to gather in my head for the past few years.


Disability vs Biological vs Physiological vs Transability Identity

The cover of Whole: A Documentary, featuring a bearded amputee sitting on a couch
Melody Gilbert’s “Whole” interviews several individuals who have BIID

To start, the whole idea of transability requires a deep conversation around identity and bodies, something that has been tackled by people far smarter than me and is ground I do not feel necessary to retrace here. What is important to note, however, is I believe there is a real distinction between biological/physiological identity factors and historic/experiential/social identity factors that, when put together, form the bedrock upon which our person is built.

Too often I find the concept of disability becomes reified, as though it is an actual thing that some people are blessed/cursed with while others will never possess it. Something tangible that lurks within us, the disabled, which you, the nondisabled, do not and cannot have. This lurking signifier then informs everything we do, how we think, and what we can and cannot talk about. I am disabled. I understand the disabled. I speak for the disabled. Of course, this is simply not the case. I know about my disability and can perhaps empathize with other similar types of disability, but there is nothing that inherently binds me to other disabled individuals aside from systemic and institutionalized ableism.

This is not to say there is no such thing as the ‘disabled’ subject, but rather that ‘disabled’ is a subjective identity, one created, controlled and maintained by the physical and cultural edges of society. But I think there is a separation between the physical manifestation of disablement and the identity that forms around impairment. In my view, this is the fundamental flaw between attempting to correlate BIID with transgender — while the formation of gender is largely cultural, there are biological factors that can contribute to our experience/preference/desire for gender, some internal driving force that seems to pull us in a certain direction. While muscular dystrophy is in my genes, marks the formation of my body and moulds my subsequent interaction with the world (and its interaction with me), my personhood is not intertwined with it; I am not bound to muscular dystrophy nor can one desire its manifestation of life, as though it were singular, because the experience of muscular dystrophy is multiple and various from person to person. There is no “muscular dystrophy identity,” merely people for whom the experience of muscular dystrophy has formed part of their identity. As such, I think we are doing a disservice by dubbing this phenomena ‘transability’ as it attempts to gain legitimacy by associating with something it actually has little in common with and, perhaps inadvertently, provides an opportunity to delegitimate the work being done by trans activists and advocates.

But this perhaps brings me to perhaps the most important question(s) of all…

The reality of fragile bodies

Movie poster for the film Quid Pro Quo
“Quid Pro Quo” stars Nick Stahl who plays a disabled disc jockey investigating claims that people are paying to have their limbs amputated.

Who isn’t ‘transable’? Who hasn’t felt the physical manifestation of their body does not match their internal construction of self? More to the point, whose bodies aren’t constantly shifting and reconfiguring as we grow old? How many rhetorical questions is too many rhetorical questions? The problem with forming one’s identity around ‘disability’ is that disability in and of itself is not a unique experience. Face it, people, ‘disability’ is a growth industry! Our numbers are growing by the minute. We’re coming for you and everyone you love. Anyone can be and will be disabled in some way at some point in their lifetime and despite our worst fears and imaginations, this isn’t necessarily a bad thing. It merely means changing the ways we flow through this world, not fundamentally altering who we are as people. One leg or two, you are still you. Loss of hearing will not suddenly make you a fundamentally different person, although it might change the ways in which you communicate.

At the same time, who are we to police what people do with their bodies? I understand those who argue people with BIID are putting an ‘unnecessary’ burden on the medical system, but they are certainly not the first group of people who have turned to medical science to reconfigure their physical appearance. Further, there is a good chance that much as Robert Stoller found back in the 1960s, that transgendered individuals had much better health outcomes when being allowed to live as their preferred gender, perhaps so too will people with BIID if we allow them to embrace their disabled self. Maybe using a wheelchair is a superior way to live for some people. At what point were we anointed with the obligation to dictate how people live so long as it doesn’t directly impact or harm our own way of living life?

The problem with how we’re reacting

At the root of our apparent disgust for transability is our incapability to comprehend how anyone would choose to be disabled. Across the social web, people cried out that the world had ‘gone mad’ and that apparently all disabled people everywhere would give anything to get their bodies back — as though they had somehow been stolen or held captive…probably by those confining wheelchairs — and that the desires of this extreme minority of people was in some way an insult to all the poor cripples. Subconsciously, these responses are not just about those with BIID but rather are a reflection of the poster themselves and the result of their own confrontation with the possibility of physical or intellectual impairment. The threat posed by transability is to their own corporeality and therefore the offense is personal; how dare you desire disability as there is nothing more terrifying to me. Consciously, I think these posters are genuinely attempting to protect the disabled, but rather than protecting us invalids, these people inadvertently spent the afternoon filling the Internets with pronouncements of all the ways disabled lives and bodies are inferior, detestable, and horrendous. How many times do you have to read that your life sucks before you start to believe it? The problem with subjective ableism is that eventually it becomes a self-fulfilling prophecy; or at least a self hating one.  Some within the disabled population believe the hype, becoming convinced of their inadequacies and assume the sick role. Maybe it is this same reason that makes transitioning into a disabled body so difficult for some with acquired injuries — yes, they’ve suffered trauma and loss, but it probably doesn’t help that they’ve spent their whole lives learning to hate aberrant (abhorrent?) bodies. Worse still, despite years of educating and forcing disabled bodies into the public eye, demanding respect and equality through law and legislation, I wonder how we could ever hope to be accepted as normal, and therefore truly deserving of full entry into mainstream society, if we are doing nothing to fight back the ugly and visceral hatred that underlies ableism.

I think this past week has helped show me where we are in the disability rights movement and where we must go. There is still a lot of hatred out there towards disability itself, hatred at how we can break down and terror of our own fragility. We’ve come a long way in the past 20 years in bringing disability out of the shadow, but we clearly still have a long way to go towards letting go of our anxieties around corporeal wholeness and identity and perhaps that is the corridor through which we must traverse before achieving full inclusion. How we get there, I’m still not totally sure, but it appears as though the route might just be through the realms of transability.

By Jeffrey Preston

Born with a rare neuromuscular myopathy, Jeff has spent his life dedicated to advocating for himself and others with disabilities. With a PhD in Media Studies from Western University, Jeff's research focuses on the representation of disability in popular and digital culture. Jeff is currently an Assistant Professor of Disability Studies at King's University College @ Western University in London, ON.

One reply on “Transability and the Downfall of Society”