Disability: What does it even mean?

I’ve been thinking a lot about disability. Over the past year or so, I’ve become comfortable using the word in reference to myself. I no longer stutter when I claim to have a disability, and I sometimes write referring to myself as someone who is disabled.

But recently, I was challenged with questions about my ‘disabled’ identity, about the ‘disabled’ community.

And I have to say, it made me uncomfortable. It made me think.

What exactly is disability?

Some people define disability as a social model. Yes, medical impairments and differences exist, but the disability comes from a world structured incorrectly to address them. A lack of ramps, and lack of braille, a need to sit upright to look at a computer, and associated stigma, are what make these differences disabilities.

Other people rail against the idea of separating ‘impairment’ from ‘disability’, because they see them as interconnected, a source of identity, often a positive one, something intrinsic to who we are and what we do. Certain people are disabled, certain people are not.

I’m trying to figure out how I feel.

The thing is, this whole process has been fairly complicated for me.

I was considered perfectly ‘able-bodied’ for the majority of my life. It wasn’t that I was perfectly healthy, that I didn’t have any impairments. I had some hormonal imbalance issues, I got occasional migraines, I probably injured myself and had more aches and pains than one might consider typical and I even went through a summer of severe anxiety attacks, but there was never any question of me not being what society deems to be ‘normal’.

Then, somehow, I became unwell with what I first thought was a very intense migraine, and it didn’t go away. A couple of months in, I started to notice some changes.

Besides the changes in my body, and my overwhelming fear, I also noticed a change in how people interacted with me. Those who knew bits and pieces of what had been going on suddenly got very uncomfortable around me. They would cross the street to avoid talking to me, rolled their eyes when anything medical was brought up, and avoided telling me about their lives, the lives we had shared just a couple of months ago.

It wasn’t out of malice. It was that I had somehow crossed a line. I wasn’t ‘normal’ anymore, I wasn’t one of them, and it was weird.

The thing is, besides the whole being terrified and in pain part, I hadn’t changed. I didn’t feel like a different person. I didn’t feel separate. But somehow, I was. Somehow, I didn’t fit any more.

And I really didn’t need an identity crisis on top of a flailing body.

Fast forward a couple of months and nothing much had changed. My body was still a mess, I was still scared, and people were still avoiding me.

But strangers didn’t really give me second glance, unless I was wearing sunglasses in winter (which was seen as a strange fashion statement), and I told myself that certain people just weren’t comfortable dealing with illness and that was okay; at this point I didn’t need them in my life anyway.

Then, I went out in a wheelchair for the first time. And while my first experience was that of annoyance - annoyed at not being in control, annoyed that I always seemed to be facing in the wrong direction, annoyed at every curb and bump on the road - I also couldn’t help but notice how overtly aware strangers seemed to be of me.

It was startling. In some ways it was nice. Doors would be held open, I’d get extra smiles, and everyone seemed to be going out of their way to accommodate me.

But there was a flip side to the special treatment. The smiles were tinged with sympathy, and the people I knew, the people who were used to me being ‘normal’, were uncomfortable around me. Some even dismissed the need for the wheelchair, and bristled at any accommodation.

There was no doubt about it. I was being treated differently. It was not just that I had an impairment, a difference, that was being accommodated, it was that I was being perceived differently - with the chair, I inspired different reactions than without the chair.

It made me think.

With the chair, as with my neck brace, with my walker, with my canes - I am visibly impaired. Visibly disabled.

Without them, I might be struggling even more, but I don’t necessarily have to face that perception of being ‘disabled’. I don’t get treated differently.

But the people who don’t need the visual reminder, the people who know, still react.

So what exactly is the line for being considered a ‘disabled’ person? I certainly didn’t feel any different when I first seemed to be excluded from the ‘normal’ category.

I didn’t feel like a ‘disabled’ person, and the only reason I might now is in large part not because of any of my impairments/symptoms/differences, but because of ways that I am excluded from certain venues, by the smiles tinged with sympathy, by the stares from kids trained not to ask, but burning with curiosity.

There are some wonderful communities online, and about a year into my medical journey I became acquainted with the chronic illness community.

Some aspects of it are not my cup of tea, but other corners are truly amazing. And when I first found it, I felt overwhelmed by a sense of familiarity - here were people who understood what I was going through, who were going through similar things themselves!

So did that give me a home? An identity?

I’m not so sure. It certainly gave me people to find similarities with and bond over our shared experience of being slighted and dismissed in broader society.

But that was only important because I WAS being slighted and dismissed and made to feel different.

I didn’t find any deep personal connection through that method alone though. Being seen as the same and having similar experiences do not necessarily put anyone on the exact same page.

One common thread that I have found through these communities and through my personal experience, is an issue of dependance.

A key aspect of being labeled as having a disability, seems to involve not being able to get through essential tasks without some sort of accommodation.

And that can make those of us with disabilities appear a burden, whether welcome or not, and it can make us feel like a burden.

But the thing is, every single human being on this planet is dependant on others to survive. Some more than others, of course, I mean in my world it is practically expected that we cannot feed or clothe or shelter ourselves, we need multiple other people to do that for us and we compensate them accordingly.

It seems that ‘disability’ comes in when our needs fall outside of socially accepted norms, and when we can no longer cover it up.

And I personally think that’s ridiculous, and not a foundation for an identity, for an ‘other’ way of being.

I mean, everybody will be ‘disabled’ at some point in their life. Everybody will be ‘impaired’. It might be a temporary illness, it might be due to an injury, it might be a consequence of an aging body, and it might just be the way we’re built.

How can something so transient, so universal, be an identity? Be a mark for inclusion or exclusion?

I don’t know that I’d say I only have an ‘impairment’ and not a ‘disability’, because the reality is that I do struggle to navigate the world I live in, and that does affect me. I am so intertwined with my symptoms and experience that I don’t believe I can separate myself from them. The way I plan my day, the thoughts that run through my mind - so much has to do with my experience of disability.

But I also can’t separate myself from the fact that I attended upwards of 9 schools. And I’m not seen or treated as a ‘school switcher’.

I can’t separate myself from the fact that I grew up with an older brother, but I am not labeled a ‘younger sister’ as I go about my days.

I guess I would say that I do have a disability. It isn’t only limited to the world around me, it is all wrapped up in my experience, my likes and dislikes, and my passion.

But so are all of my experiences.

Ultimately, while I guess I am ‘disabled’ right now and while that affects me in interesting ways, I’m just a person.

That being said, these are only my opinions. My opinions right now, in this moment. They might change. And many other people who identify as having a disability, having an impairment or a medical condition might not see things in the same way.

But that’s kind of the point.