It’s December 3rd — happy International Day of Persons with Disabilities! The first official IDPD was in 1992, but if I’m being honest I had never heard of it until this year when I dove head-first into the world of disability after my diagnosis. Despite being somewhat of a mouthful, this UN-sanctioned day of observance is important as it promotes the awareness and understanding of disability issues and helps mobilize support for the dignity, rights and general well-being of disabled people.
While the recognition of IDPD is crucial, and I wish it was more broadly known about, my personal observance brings up conflicting feelings that I have about my own journey with disability. When I first found out that I was autistic in late June, I was relieved. I finally had answers to questions that I had been asking myself for years, things finally made a little bit more sense. But soon I was hit with a thought: if I’m autistic, does that also mean that I’m disabled?
The answer is simple, really: yes, I am disabled. But the thing is, I didn’t want to be. The more I thought about it, the more questions I had. Is autism even a disability? If it is, am I disabled enough to claim the title of ‘disabled’? Can I call myself disabled if no one thinks I am? I’ve lived 23 years without needing any supports or accommodations — how can I be disabled? Will people with more visible disabilities than me be upset if I start identifying myself as disabled? Would I be taking attention away from them? I asked myself all of these questions in a subconscious attempt to prevent myself from identifying as disabled, to distance myself from this label that I didn’t fully understand but that I knew I definitely didn’t want.
Why was I so hesitant to accept the fact that I am disabled? There are a few reasons. First, to accept that I am disabled is to accept a brand new identity. Realizing your identity is hard — it’s probably why teenagers are so angsty since literally everything they do is an attempt to figure out who they are. Doing so as an adult is even harder, as you have so much more to undo and rebuild. For example, if you’ve spent 30 years living as a straight person, realizing you’re gay is not always going to be the easiest of transitions. Getting a disability diagnosis as an adult has an added layer of complexity, as you’re not uncovering a new-found part of your identity through introspection and self-reflection, but rather you’re told who you actually are via a clinical assessment. One day you’re able-bodied and the next you’re disabled — doctor’s orders. I essentially had to change my identity overnight and that adjustment was, and still is, difficult.
Undoing the identity I had built over 23 years wasn’t going to be easy. It still isn’t. I had always thought of myself as capable, independent, and able. Reconciling that with this new label of ‘disabled’ was difficult. I thought that I had to completely change how I saw myself. In my mind I could not be disabled and independent — those two concepts were mutually exclusive. All those questions I had circling in my mind were just me failing to fit how I saw myself into the mould of what I thought it meant to be disabled. I thought that calling myself disabled was like trying to fit a square peg into a round hole.
I’ve recently realized that I wasn’t actually trying to reconcile two conflicting ideas about myself — I was actually struggling with my internalized ableism. The reason why I couldn’t see myself as disabled was that I did not fully and properly understand what disability is. I knew that my peg was square but I just assumed that the hole was round and that I wouldn’t fit. The reason that the idea I had of myself didn’t fit into the idea I had of disability was that my understanding of disability was wrong. Despite objectively knowing that disabled people can live independently, be successful, and not look disabled at first glance, my immediate associations with being labelled as disabled were the opposite. I immediately assumed that to be disabled meant to be dependent on others, be looked down on by society, and to lead a difficult life. I wasn’t explicitly having those thoughts, but those subconscious connotations are what prevented me from being okay with being labelled as disabled.
My internalized ableism held me back from accepting the fact that I am disabled. It took me months to recognize this and I am still working on being fully accepting of this new identity. There are still things that I am working on. For example, I’ve accepted personally that I am disabled, but I’m still not fully comfortable expressing this publicly (outside of whatever this blog is). I’m hesitant to draw attention to the fact that I am disabled as, unless I tell you, it really is not obvious at all. On one hand, this is a privilege — I can choose what I disclose to who and when — but on the other, it makes asking for any accommodation I may need more vulnerable and potentially opens me up to the uncomfortable situation of having to ‘prove’ my disability.
Every disability is different, but there are shared experiences among those of us with “invisible disabilities”. Because of the unseen nature of these disabilities, these experiences and struggles are not always as openly discussed or front of mind during conversations around disability, accessibility, and inclusion. This fact is being addressed this year through the 2020 theme for International Day of Persons with Disabilities: “Not All Disabilities Are Visible”. There are over 1 billion disabled people globally, including 450 million with neurological or developmental disabilities, many of which are “invisible” at first glance. Due in large part to the stigma of disability, nearly two-thirds of these people will never seek professional medical help. That 450 million number doesn’t even include other invisible disabilities such as chronic pain, diabetes, hearing impairment, visual impairment, and others.
I didn’t want to be disabled because I saw disability as an inherently negative thing. I cannot express enough the negative impact that this dissonance caused on my mental health and the stress I felt trying to come to terms with the fact that I am disabled. Efforts like IDPD that aim to reduce stigma around disability are fundamental to reducing ableism throughout society as well as within ourselves. Days like today that prompt open and frank discussions about the diverse realities of the disabled experience make it more likely that people like me who get diagnosed later in life will be able to accept this new piece of their identity with open arms.
So from me, a disabled person, happy International Day of Persons with Disabilities!
