The shame I experience because of my disability is a feeling that I do not always feel welcome to express. It is a feeling that manifests simply for being the way that I am and knowing that there is not much I can do about it. But it feels as though there are rules that I have to abide by in order to experience my disability appropriately in the eyes of others.
When I attempt to consume the not-so-abundant landscape of media depicting disabilities, finding solace from this feeling is not all that common. I long to find something that I can relate to, only to be met with films and TV shows that fall into the same tiresome tropes time and time again, in which disabled characters are used as a mere plot conflict that must be overcome, rather than to shed light on a genuine human experience.
Examples like Rain Man and x + y spring to mind, with autistic characters written into scripts as if they are some battle that neurotypical characters must reluctantly deal with. The latter film, in particular, uses an autistic protagonist’s struggle with physical contact as a lesson to be learnt if he wants to truly experience love like those around him. Tropes like these serve as constant reminders that disabilities continue to be seen as barriers and burdens to everyone else, and if I were to ever earn respect and love, it must come at the expense of my own comfort and basic needs.
Media that falls into this pattern does so with good intentions, but more often than not, it is made by non-disabled people for non-disabled people. The emotional reward of writing like this is felt by everyone but those being written about, whose conditions are being exploited for superficial emotional satisfaction. Existing as a disabled person amidst all of these gross, preconceived ideas of what I need to present myself as has taught me that my success is only worthwhile if it is in spite of who I am.
Not receiving any medical diagnoses until I was in my late teenage years meant that I was guilty of indulging in narratives like these with no questions asked. I regret to think back on how I would consume these stories, tear up at how difficult the journey must have been, only to be thankful that these people managed to leave their troubles behind them. Eventually, I realised that all of these toxic misconceptions that I had learnt over seventeen years of my life were like a chain being built link by link, and now it was tied to my own feet. I was burdened by this impossible expectation that I must succeed by standards set by abled people around me, in a world that didn’t even offer me equal footing.
I would convince myself that suffering with chronic pain was a losing game, and I needed to be healthy if I were ever to find comfort within myself again. When people said I needed to talk about my disability less, I would listen. When others complained that I took things too seriously, I made my pain a joke. And when I was told that I was spending too much time dwelling on the negative, I learnt to reserve my words for when I was feeling better. For years I spent my time accommodating my existence to other people because I couldn’t stand the thought of making them uncomfortable, and if I wasn’t doing well, it wasn’t worth discussing. But I wasn’t one of the fictional characters that they mistook as real; this was not something I could walk away from, and no happy ending was being written for me any time soon.
My disability was treated like a bump in the road, as though I just needed a little more time before I was back on my feet. When I did start to feel better, I revelled in the things I could do again. My suffering was now some story that I could laugh about to show how far I had come. I would write about my disability and make sure to package up the ending with a nice, neat bow so that I could convince others, and myself, that this was behind me.
But there inevitably came a time where I wasn’t doing okay anymore. My chronic pain came back with a vengeance and left me barely able to sleep, struggling to eat, and unfit to walk without a stick. Putting the embarrassment and shame I felt from this into words is a task beyond my capabilities; after months of indulging in what I deemed success, I was back to square one.
My mind resorted back to the same old thought processes that told me that I had to overcome this pain, and needed to stay quiet about it as I did so. On social media I would be bombarded with abled voices singing the praises of other disabled individuals who were able to run marathons or push through their condition without saying a word. Over and over, I was sent the message that this was what “real strength” looked like, and that this is what a “true inspiration” is. In actuality, it’s a bizarre exploitation of trauma that exists solely for non-disabled people to justify why they don’t want to listen to us, and do not care if we are struggling.
But my disability does not owe you a success story, and this is not a journey of recovery. I don’t want to abide by rules put in place to spare other people’s comfort. My worth is not measured by what I can do in spite of who I am, and I should not be made to feel weak when I ask for help. What makes disabled people strong is living in a world that does not care to accommodate them, and not just conforming to what is expected of them by those who couldn’t come close to understanding. I will no longer feel ashamed of the trauma that comes with my condition, and I refuse to bear the guilt of those that feel inconvenienced by my existence.
About Rooted In Rights
Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights