Decentring loss in ‘becoming disabled’
Updated: 6 days ago
The process of ‘becoming disabled’ is often framed as a tragedy of lost opportunities. It is understood as the possibility of a bountiful future closing off, due to the effects of an accident or illness. But for many, the process is much more complicated, and often comes with a striking mixture of grief and joy. For some, ‘becoming disabled’ is the inevitable result of a degenerative disorder, and learning to accept the loss of your mobility. For others, it is the relief of arriving at the label ‘disabled’ after a lifetime of confusion and isolation. Disability can be a site of pain — but it can also be a site of freedom, self-acceptance, and community.
Disability is often spoken about as if it accompanies someone for their whole life or, conversely, is entirely absent. I don’t see a lot of recognition given to acquiring the label ‘disabled’, and the representation that I do see is almost always framed as a tragedy or a loss. This doesn’t leave room for talking about disability with a sense of pride and celebration. There is no room for people like me who were born with their disabilities, but who didn’t always see them as such. It excludes many people, in fact, and it obscures how dynamic, diverse, and unpredictable disability can be. For this reason, I chose to interview a student with an experience quite different from mine, for whom ‘becoming’ disabled, was an incredibly difficult and painful process. They have co-occurring disabilities that impact their mental health, cognitive functioning, and their mobility. They chose to remain anonymous, and so will be referred to using a pseudonym; but having our experiences intertwined in this article will hopefully exemplify how diverse experiences of disability can be. Chris expressed that:
“My disability didn’t impact me much before and I was very active. I would wake up and be like ‘I probably won’t be able to do these activities a year from now’ because my condition would deteriorate and that’s quite daunting to experience as a kid. It soon sunk in that I was not going to be able-bodied much longer. Other kids would be doing rugby and clubs, whereas I would spend all my time at the doctors.”
Everyone arrives at disability in different ways and at different points in their life. Some people feel that they have a lot of agency in their transition to disability, and others feel it to be incredibly dehumanising. For me, becoming disabled involved giving myself permission to stop hiding my symptoms from others, to the extent of neglecting my needs. For others, becoming disabled might involve losing their mobility, or their sight, or simply their freedom.
It’s taken a very long time for me to arrive at the label ‘disabled’. Only in the second half of 2021 did I begin to see myself as disabled. I’ve experienced a lot of privilege within my own journey. I was born autistic, and autism isn’t something that gets ‘better’ or ‘worse’ over time. This isn’t the case for many with degenerative conditions.
Chris described to me the experience of losing their mobility:
“It's really upsetting. Not because it’s a bad thing to be disabled, but just because if you’re born pretty much able-bodied and find yourself deteriorating day to day, it’s really difficult. It's something that I have on my mind all the time.”
Nevertheless, they want to disrupt the narrative that disability is inherently negative:
“Identifying as disabled is the only way I can justify self-care. I've always just put it aside, but having that label and identifying with it forces me to take a step back and evaluate how I'm feeling. It leads to a lot more self-reflection and kindness.”
I’ve experienced something similar myself: using the language of disability altered how many actions were framed to myself and others. To call myself disabled didn’t feel like a shame or a loss. It felt like looking after myself. Being disabled meant that I wasn’t lying or lazy. That I didn’t have to feel that shame of not living up to a standard that wasn’t created with me in mind. That I didn’t have to push myself until I broke. That I could ask for the accommodations I deserved. Understanding that I was disabled meant that I didn’t need to apologise for who I was, and ultimately, that my conditions affected me first and foremost.
The perceptions of the people around us can drastically change how we view ourselves and our disabilities. For me, identifying as disabled acts as a rebellion against the people who saw my disability as ‘my fault’. As my disabilities are invisible, this makes it easy for others to call my diagnoses into question. Often, our experience with nondisabled people can make us attach a lot of shame to being disabled, although the form of invalidation we experience varies massively. For Chris, the fact that some of their disabilities are physical causes uniquely challenging experiences with others:
“The little things that able-bodied people do to show that they’re not thinking about it makes it harder. It's little things like inviting me somewhere but not taking the time to think about whether it's accessible. Or when they don’t understand how traumatic doctors' appointments can be. Or quickly parking in the disabled spot to get into the shop quickly. It tells me that they don’t respect disabled people.”
Transitioning to see yourself under the ‘disabled’ umbrella gives many people the language to talk about the hard parts, and the good parts too. For me, autism doesn’t just mean overload, exhaustion, and feelings of isolation. It means the most beautiful friendships with other autistic people. It means the warmth and safety of familiar things. It means knowing I have limited words and choosing them carefully. It means becoming so invested in things I love that time stands still. Being disabled is one of my greatest strengths.
Chris expressed that disability can be a source of pride and solidarity:
“It’s made me focus on things I wouldn’t have known about before. I have a community of people that are understanding. Identifying as disabled has helped me with self-confidence and my self-care journey.”
Disability can be a site of pain; not only from the symptoms or characteristics of the disabilities themselves, but also from the shame we feel (or are made to feel) about them. And disability can also be a source of celebration, and a means to find community. Every disabled person will experience these sides to disability in diverging and fluctuating quantities. For many people, ‘becoming disabled’ gives a name to the sum of all that pain and confusion and loss — and the hope that lies in the middle.