In neuro-disorders advocacy, I’ve come across vastly differing views on disability, what it means, and whether or not using the label in regards to oneself is justified.
I have been thinking about these questions a lot myself, and so I wanted to take a moment to explain my own stance and reasoning.
I am disabled. It is no secret that I am, or that I identify with this signifier.
It is also no secret that I consider myself to be quite capable, and that I do not believe that the challenges set before me define me or put any specific constraints or parameters around my life.
I’ve realized that many people do not understand how these two statements reconcile.
I do understand that the statements seem contradictory - “I am disabled”, and “I am able” are opposing beliefs, right?
Or are they?
Spoiler alert: I don’t think so.
Accepting one’s disability does not mean that one is accepting defeat or a general inability to do the things that bring joy and fulfillment.
Instead, it signifies a recognition that one may have to go about activities in different ways than the standard person. One can achieve the same end, but the process may look strikingly distinct as compared to the norm.
I learned this lesson the hard way.
I used to have a measure of discomfort with the term “disabled”. Sometimes I used it, sometimes I refused. Sometimes I sat uncomfortably with what felt like nothing more than an external label, not knowing what to make of it. Throughout this period of mental vacillation, I experienced recurring bouts of discomfort taking the space I needed to make accommodations for or properly manage my multiple health conditions. I did not want to be different, but more than that I didn’t want to be a burden. I didn’t want to feel weak.
I thought that being able to do things the same way as everyone else was a signifier of overcoming what could have been a crippling condition. I thought that, through stubborn relentlessness and an iron will, I had dodged the bullet of inadequacy that I constantly felt following close at my heels.
But that paradigm came crashing down when (as I’ve written about previously) my failure to properly accommodate my biological differences led in part to the development of Functional Neurological Disorder.
For two years, I was horrifically ill. I felt I’d lost everything. I couldn’t drive. I couldn’t go for runs or hikes. I couldn’t cook, or stand too close to drop-offs, or even be left alone in my own home. I couldn’t even think properly most days - that was the worst of it. I’ve always prided myself on my ability to reason, learn, and create. Suddenly I found myself in a stupor so crippling I barely even knew if any of the old me was left.
I felt sorry for myself for a long time. But then, I made an important realization.
I am disabled. And that is okay.
Most importantly, disability does not define or change in any way one’s inherent worth and dignity. Whether one is disabled or perfectly healthy makes no difference whatsoever in their value as a person. If I never put together another coherent sentence or took an independent step, I would still have the same inherent worth that I did before, that I did while I was in the worst of my illness, and that I still have now. No matter what, I have the same soul, and the worth of that inner being remains constant regardless of what happens to the body it lives in. A body is just a vessel. Even if it breaks completely, the substance within is unchanged.
But additionally, accepting the term doesn’t mean I’m accepting a lower quality of life or any perception of lessened ability to live a full, productive, and meaningful life.
Instead, accepting the identifier of disability means that I finally accept that there are important differences in my needs, and that therefore I need to allow myself to do things differently.
So much of my spiral into illness was propelled by the fact that I pushed my neurodivergent mind to operate neurotypically, and that I expected my medically different body to be able to handle the normal stresses placed on it by a typical lifestyle.
Forcing myself to appear “normal” was not a sign of strength - it was a sign of fear and social anxiety that was keeping me trapped in a negative situation.
On the other hand, being able to say “I am disabled” publicly and without shame has allowed me to - without embarrassment - take the social liberty to make the sorts of accommodations for myself that I need.
I now know, for example, that when my brain gets overwhelmed by sensory input there is no real need for me to pretend that my experience is less than what it is. I allow myself to take a step back and rest in a less stimulating environment, even if there’s no natural opportunity and I have to create the space that I need.
I know that when I want to participate in activities that are not set up for people like me, it’s okay to take extra steps to protect myself and accommodate my needs. For example: on New Year’s Eve, I went to an event with friends where there were flashing lights of the sort that put me at risk for medical problems. So, I wore blackout shades and participated more or less blind to the visual environment. That might seem drastic or dramatic to some, but let me ask this: what’s more drastic? Chronically missing out on making memories with the people in my life because of a world that isn’t set up for me, or taking small steps to allow myself to engage to the fullest extent of my ability?
As it was, only the people immediately interacting with me even knew the measure I’d taken, and none of them were bothered by it in the slightest. I was able to participate and make a positive memory rather than spending my NYE home wishing I wasn’t missing out.
And in the end, it was the acceptance of my situation that allowed me to start taking the steps needed to begin recovering. If you’re in denial that things are as bad as they are, you can’t take action to start fixing it. Once I realized the extent of my neurological differences, I was able to identify points of intervention that could be made to help me. I realized, while considering the full scope of my situation, that my pre-existing problems are as severe as they are and that therefore if they are supported I would probably start feeling better.
And so far it’s been working. I’m not 100% there yet, but I’m on the road to recovery.
As ironic as it seems, accepting that I am disabled has led only to increased ability and opened an entire world of possibilities.
