Recently, I’ve been reading Disability Visibility, a compilation of essays and articles from disabled writers and activists from across the globe, which were collected and edited into a book by Alice Wong. It broaches difficult topics such as abortion, infanticide, eugenics, racism, institutionalisation, and incarceration, but a common theme throughout the book is the strength and resilience demonstrated by all the authors. This got me thinking about my attitude towards my own disability.
As a disabled writer myself, albeit a much lesser-known one, I often tackle political and social issues by using anecdotes to illustrate my points. This means that regular readers will be almost as familiar with my many dysfunctional body parts as I am, and will know about the ableism I experience on an almost daily basis, as well as my political alignment (i.e., more liberal than Bernie Sanders’ left glove). However, the way I feel about being disabled myself is not something that can be quite as easily extricated from previous posts.
Any disabled person with a public-facing presence, whether that be on a personal social media account or as a well-known media personality, will probably experience the conflict of wanting to appear strong and independent without erasing the difficulties that come with being disabled. I am no exception. When I write about my experiences, I don’t want able-bodied people to feel sorry for me; I want them to understand and learn from what I have to say. To avoid the condescending pity and negative assumptions I might otherwise encounter, I am forced to put on a brave face.
Unfortunately, behind that brave face is someone who cannot remember what it is like to not be in pain, someone who has been repeatedly disbelieved and neglected by the healthcare system, and someone who has spent the past decade repeating the same arguments for accessibility over and over again, with no end in sight. And frankly, it sucks.
Regrettably, if the façade slips and I happen to mention this in public, good Samaritans will rather aggressively try to cheer me up with comforting phrases. They mean well, but the onslaught of positivity often makes me feel worse, and I can’t help but wonder if this reaction is more for their benefit than mine. Some wounds will heal better if left open to the air instead of being smothered by bandages. In fact, there is even a school of thought in modern psychotherapy that we shouldn’t try to eliminate negative emotions, but learn when it is normal and even beneficial to experience negativity (research Rollo May for more).
It may seem like an oxymoron, but it is possible to be both proud of my disability and to hate the very literal pain it brings. If someone were to offer me an actual cure for M.E, asthma, and endometriosis, I wouldn’t hesitate to accept. However, we are not even close to finding effective cures for such conditions, and I don’t like to waste my already limited energy thinking about what a cure would mean. Instead, I must focus all of my energy on living with a disability.
The truth of the matter is that disabled people don’t put on a brave face to inspire you; it’s a defence mechanism we use to protect ourselves. We must be seen as stoic and resilient to be taken seriously, but I doubt there is a disabled person on Earth who hasn’t broken down behind closed doors, and it took me longer than I’d care to admit that I realised that includes the authors in Disability Visibility.
Disability is pain and vulnerability, but it is also persistence and versatility. Having a positive outlook towards it is essential for both personal and societal progress, but a dogged positivity that ignores its negative aspects does more harm than good. Disability positivity being a good thing does not mean that disability negativity is bad.