Self-declaration of disability status is a gendered issue and a matter of human rights
I have shifted from label to label over the years like I have shifted through fashion trends, each time in desperate search of explanation, identity, community, help. I have frantically squeezed and moulded myself to fit whatever diagnostic criteria was presented to me, wearing each diagnosis like a badge of honour, each time hoping that I had finally found a route out of the tormented life I was living. In a world where I simply could not be taken seriously without a medical diagnosis, a world where help was only available to those with a disability certificate-of-authenticity; I hysterically flailed and doggy-paddled in the muddy waters of misdiagnosis.
In this endless search, I have taken powerful medications that I did not need and boxed myself into categories in which I knew I did not belong. In my longing for belonging, I resigned myself to a perpetual state of outsider-ness. I took up space in places I could not truthfully identify with but had been convinced were right for me. For this reason, I have wrestled with the notion of labels, particularly when medically diagnosed – they are notoriously unreliable when considered in the context of women’s healthcare and what are the implications on our lives if we happen to be wearing the wrong one?
When I was diagnosed with borderline personality disorder I would sit for days taking online quizzes or reading blogs about the condition. They explained the intensity with which I felt every emotion, but they fell short of explaining why the feeling of a wrinkled sock on my foot made me want to slither out of my skin, or why the noise of my neighbour’s surround sound could reduce me to tears, or why I fidget intensely when I have to sit still for any length of time. I had been given someone else’s label on induction day and I knew it, which is why I continued to read. I read to convince myself that this diagnosis was correct. I would bend and stretch my symptoms until they fit what I thought I should be - what the qualified professionals told me I was. The failings in my diagnostic process were undeniably attributable to my gender. It was easier for me as a young woman to be hormonal or mentally unstable, than it was to thoroughly explore my symptoms in the way that I deserved. It was easier for everyone to subdue my autistic presentations with powerful medication that emptied me of all individuality and depth, than it was to listen to the words I was saying.
With each diagnosis, I felt as though some of my most burning questions about myself were answered and so desperate for a way out of the messiness of my life, I sacrificed the answers that I still did not have. I resigned myself to the idea that I may never have those answers, that to ask for all those answers was unreasonable. Maybe not everything needed an explanation, maybe I was just problematic and seeking to justify it.
I had flirted with the idea that I might be autistic many times over the course of my life, and each time I presented myself with a counter argument as to why I wasn’t. I didn’t dare suggest I was autistic out loud, it felt like ushering myself into a community that I had no business being in.
The way I dug myself out of the autistic diagnostic criteria and buried myself in the denial was abuse. Abuse I had learned to inflict on myself as a neurodivergent girl, growing up in a society designed for neurotypical men. A society that was also systematically unkind to disabled people, and that seemed somewhat proud of it, or at the very least was unwilling to meaningfully address it.
I was 22 before I made the link between how much I hated noise and sensory overload. I had been living with noise sensitivity my entire life – the sound of my stepdad’s TV through my bedroom floor would send me into fits of unexplained rage as a child – but something in my brain was beginning to shift. Living alone, I found myself with the freedom to express my sensory discomforts, and that freedom brought me the realisation that I had spent my life suppressing my discomfort, for the comfort of others. For the first time, I was able to authentically tune into those needs, and cater for them.
Stepping out of my flat when my neighbour blared music through my walls felt like taking a deep breath after an asthma attack. Putting earplugs in on public transport when my brain was shutting down in response to the multiple, competing audio-inputs around me, sent waves of relief coursing through my body.
I was almost easing myself, medical term by medical term, into what subconsciously I had known for a long time – that I am autistic. The realisation felt like the way jigsaw pieces seamlessly fit together when you slide them into the right place.
Research led me to sensory overload, which led me to attention deficit hyperactivity disorder, which led me to the umbrella term – autism spectrum disorder. I was almost easing myself, medical term by medical term, into what subconsciously I had known for a long time – that I am autistic. The realisation felt like the way jigsaw pieces seamlessly fit together when you slide them into the right place. After years of trying to force them into spaces that they simply did not fit, my jigsaw pieces were effortlessly intertwined, the picture they created was complete and the story they told made perfect sense.
I took test after test and highlighted page after page of information before presenting it to my Doctor. After months on a waiting list and more than a decade of waiting, I scored almost full marks (in diagnostic terms) on every single assessment presented to me. I was right, I had felt it in my bones and was self-diagnosed already, but the confirmation was now in front of me. The results were so conclusive that while of course being consumed by relief, I was hurt and perplexed by the fact that it had been continually missed. At 23, I read over my medical records for the first time and discovered that 8 years prior, my doctor had referred me for an autism assessment. This referral was rejected by the man in charge without even so much as taking the time to meet me. He “wasn’t convinced”. It’s difficult not to feel resentment towards this man when I consider how different the last 8 years might have been had he given me the time and consideration I deserved. I often wonder if I had been a 15-year-old boy with these difficulties instead of a 15-year-old girl, would that have inspired him to engage in more critical thought?
Finally accessing this diagnosis has been the most truly liberating experience of my life and the person I have to thank for that is myself. I found it, I researched it and I fought hard for it to be taken seriously. If I hadn’t, I would still be flailing around in those muddy waters, lost and alone. For the first time in my life, I understand myself and I am committed to authentically honouring my needs. That’s why instead of expressing your outrage over self-declaration or forcing your employees through a degrading process to perform their disability for you just so that they can access basic support – I beg you to reflect. Reflect on the message you are communicating, that disabled people can’t be trusted to speak for themselves and are incapable of expressing their own needs, that you must hear it from an abled person before you will believe it. Reflect on how that narrative endangers disabled people and perpetuates ableism - then accept that you should return, with urgency, to your own lane.
I write this following what has been a difficult time for the disabled community and for more personal reasons, me as a disabled person. To explain the power of self-diagnosis. To explain that disabled women are so often let down in official processes and that for this reason, our access to self-diagnosis determines our access to human rights. Finally, to explain why labels (officially or self-diagnosed), although sticky and complicated, matter. I hope that by laying my story bare, I can inspire meaningful conversation about why these narratives are dangerous. I am living proof that self-diagnosis is valid, and that self-declaration of disability status is not only a gendered issue but a matter of human rights. I am living proof that disabled people are individual, autonomous human beings, that don’t need to be spoken for by abled people.
I often think of my younger self and how I wish I could go back and tell her that one day she will make sense of it all. That she is not problematic, or lazy, or selfish, or frustrating. That she is autistic and that it’s a good thing. That she deserves access to the support that she needs and that she deserves to be listened to and respected in her own right.
That one day the jigsaw pieces will fit seamlessly into place and that no one, no matter how loud they shout, can ever take it away from her.