It’s Not a Dirty Word.

With the month of June over, Pride Month has slipped into Disability Pride month. In anticipation, corporations have stopped using their rainbow logos and instead begun to post inspirational pictures of employees in wheelchairs and activists with white canes. The professional side of the internet is abuzz with activity in the meantime— what can we do to make workplaces more accessible? they ask.

That in and of itself is a great thing. The problem is that it sure seems like a lot of people don’t really mean it. Or, at least, that they aren’t willing to listen to the very people that they claim to be advocating for.

I’m scrolling through LinkedIN when that thought first occurs to me— I spend a lot of time there these days due to my current search for employment. I come across a post in which a man has told his own story about receiving an insulting low-ball offer from a company and rejecting it. Wanting to look inclusive, the company likely intended to be praised for utilizing a man with dwarfism, but heaven forbid they pay him an acceptable salary for his time.

People are supportive of the young man, mostly. They applaud his ability to know his own worth, to stand up for himself and not allow large corporations to exploit the labor of others. It seems as though everyone is on the same page. …And then I start to read the comments, and I see the same sentiment pop up over and over again.

You’re not disabled, you’re just differently abled!

You shouldn’t call yourself disabled— you’re just special!

No one is truly disabled; ability is all in the mind.

There is no such thing as disability, just hard work and effort.

Something about those phrases has always left a sour taste in my mouth. The young man in question feels the same and tries to explain as much in at least one reply, and only to be largely ignored. Those comments continue to pour in.

Eventually I feel compelled to say something. I ask that people cease to police the ways that marginalized people describe themselves. I attempt to express that it can be quite othering to have people disregard your choice of words. The comment is, to my surprise, quite well-received. But even then, people wish to argue. Those who so enjoy gatekeeping come out of the woodwork to argue that dwarfism is not a real disability, among other things, when a very quick google search would adequately explain the painful physical symptoms that can be associated with it.

It’s not about that, though. There’s something else that tugs on my heartstrings. Something more that I wish I had said, but that I know I could not have condensed into a single comment under a single LinkedIN post.

Disability is something that’s directly impacted my life from the time I was six years old. I still wonder if I’m allowed to call myself “disabled”. It doesn’t feel like it’s quite the right term for me, and I don’t want to take up space in a place where people are already so overlooked. I am mentally ill. I do have several types of chronic pain. I am looking for remote work so that I can do a job, any job, without feeling like I am going to die every time I have to force myself to leave my house. But maybe that’s not “disabled”. Maybe I don’t have much right to speak on the issue on my own even if our circumstances do happen to overlap.

My mother, though, is “card carrying”— she’s recognized as officially disabled by our local government and receives a social security check every month to that end. She has for over a decade now. So I ask her for her thoughts on the situation, on the sentiment behind that well-intentioned expression, and she has quite a bit to say.

“You know how people bother me sometimes when I use the handicapped spot? Because they don’t think I look disabled?”

“I do,” I answer, cringing internally. I’ve taken to asking those people where they got their neurology degrees, since they seem to think that they’re experts on my mother’s brain trauma.

“I’ll bet those people say things like that. That they say stuff like ‘disability is all in the mind’. I wish it was! If I had a say, my joints wouldn’t hurt all the time.”

I frown when she says that, of course. I also wish she wasn’t in so much pain. That there was something more I could do for her. But it’s hard to be of much use to someone else when you can barely seem to take care of yourself.

My mother has had her arthritis and her anemia for her whole life, but her other ailments came later by way of a car accident. It’s not always easy for her to accept that she is sometimes incapable. There was a time when she was one of the more active people I knew. Over the years, her ailments have compounded and sparked other issues of their own, as they so often do. It’s become harder and harder for her to accomplish physical tasks.

Some days are easy for her. Others are not. Maybe her disability IS in her mind to some degree. She accomplishes quite a bit for someone who’s in as much pain as she is, and she does it through sheer force of will, by a refusal to accept that she cannot do everything on her own. But try as she might to ignore the reality of it from time to time, she is still disabled. There are days when she is in too much pain to get out of bed. Rheumatoid arthritis, fibromyalgia, traumatic brain injury, cerebral stroke— the list goes on. It’s not a pretty list, and it’s not one that she or any medical professional can ignore.

So forgive me if I find it frustrating to have someone look me in the proverbial eye and tell me that my mother is “just special”. Spare me some sympathy for resenting the idea that she should “just work harder”.

When I hear someone say that my mother is “just special”, or that my own mental illness is all about my mindset, I don’t hear acceptance or inclusion or comfort. I hear a refusal to acknowledge our differences and our needs. I hear an unwillingness to be accommodating. I hear a discomfort with the very idea of disability and chronic illness. I see a mind that fundamentally must believe that someone else is exactly the same as them to see them as a whole human being. And that’s not noble. Far from it— it’s sad.

If you have to ignore a part of who I am to see me, you aren’t seeing me at all. You’re seeing whatever you want to. You’re accepting only what makes you feel better, and you’re patting yourself on the back for that accomplishment. You are demanding conformity and assimilation from me in one moment, in one breath, only to put me on a pedestal as an example of your kindness and charity with the next.

It reminds me of high school, somehow. That’s when it all clicks, when I understand why those comments troubled me so much.

I don’t miss high school. People often say that it’s supposed to be the best four years of your life. I suspect that those people are neurotypical, able-bodied, heterosexual, etcetera. That they didn’t experience bullying or isolation or a school administration that simply did not understand.

Many of my teachers used to tell me that I was “special”. The very same people were incapable of understanding my occasional need for silence, for a reduction in stimuli. One such teacher discovered that I was not singing aloud during the practice session for a school event, and she planted herself right beside me until I forced myself to choke out a sound that she could hear. I choked and I choked until it was something you could call a song. “You have a beautiful voice; don’t be so silly,” she said as tears of frustration and terror streamed down my face. She didn’t understand how scared I was of being heard. She didn’t know that a voice in the back of my head was telling me that everyone in the room thought I sounded awful and would make fun of me as soon as I was out of earshot. But she didn’t ask— she patted me on the shoulder and left me there to cry.

I posted on my personal Facebook account, once, that I hated pep rallies. I hated the amount of worship placed upon the athletes for their feats of physical skill, and I despised the noise, and the flaring lights, and the crowds of people, and the time that I was required to spend pretending to be excited about soccer when I could have been working at my school art projects instead. But they did not understand what I was actually trying to say in my own clumsy way— I was given a detention for that post. “You hurt the athletes’ feelings and you showed a negative attitude,” they said.

Over and over again I failed to turn in projects and got low scores on tests. Over and over again, I ended up in the principal’s office while they tried to make some sense of me. “You’re smart,” they’d say, as if I cannot be both smart and mentally ill at the same time. “You’d get so much done if you could just apply yourself,” they’d say, as if I did not spend every morning using every ounce of energy I had to force myself to get out of bed. That effort did not matter to them because they could not see it. Because it didn’t produce anything other than my presence in a building.

I was frequently told that I was special. Very rarely did I hear someone say “I know that you’re trying, and that it can be really hard sometimes, and that your results might look a little bit different, but that’s okay”. Hearing something like that would have meant a lot. I might have been a less angry and confused teenager if I had. I might have forgiven myself more. Maybe I wouldn’t feel so much guilt now, as an adult, whenever I am not as productive as I would like to be.

For all of my troubles, though, I did produce a lot of artwork. People could understand that. It was something nice to look at, after all. Nothing complicated. I was showered in awards and prize money, and somehow, that balanced out all of my apparent failures and made everything okay. It’s something I notice all around me now that I am older. There is a temptation amongst the able-bodied and the neurotypical to hold up examples of incredible accomplishments made by disabled people as a shield, as if to say, “See? Even the disabled can be useful”.

To me, though, this has always invited another, much darker question— what of those who aren’t?

The simple fact of the matter is that some people are not productive in a practical sense. They just aren’t. Some people are so severely disabled that they must be cared for by others, and they cannot work or produce anything. If we are what we produce, are those people worth less?

Of course not. Those people are people for that reason and that reason alone. They are alive. That is enough. We are not, in fact, what we produce. That’s something I had to learn through years of therapy when I found myself unable to produce art. The idea of not being an artist was terrifying to me for all of the wrong reasons. Untangling my self-worth from the concept of productivity has been a deeply painful process, and one that’s not yet finished.

When you make someone’s worth a total of all of the hours they have worked and the things that they have to show for it— when you boil an individual down to their grades and their accomplishments— you are, whether you mean to or not, contributing to a culture of ableism. You are making the world a more cruel and unwelcoming place for those that were not born like you. And that has to change.

So, please. Stop calling us— the neurodivergent, the mentally ill, the chronically sick, the developmentally and physically disabled— “special.” Start paying attention to what we say and what we do. See us for who we are and not for what we can put on our resumes. Let us be good enough as we are, and do not shy away from us. Don’t be so afraid to acknowledge the whole of us.

Disabled, after all, is not a dirty word.