I’m sitting in the middle of an intersection. Or, what I hope could be one. Really I’m sitting somewhere in the bush, but I know there are two clear paths here. I also know if more people knew about this spot, it could eventually be not only a recognizable destination, but also a clue to what each path is like.
Also I might not be sitting here in the bush.
I’m an intellectual with an intellectual disability. I’ll let that sink in for those who’ve known me for years without knowing this. I read and write as often as I can, and I have an intellectual disability. I can talk for hours with my few close friends, I’m an English Lit major, and I’ve even done standup comedy, and I have an intellectual disability.
It’s also a physical disability. In addition to having scoliosis and balance problems I am half blind and half deaf, as well as half blind to touch, taste, and smell, all as the result of a rare mutation of a specific gene.
The limits conferred to me by my intellectual impairment are difficult to define, as I’ve been encouraged for so long to ignore them (more on that soon), but so far I’ve pinned down trouble with memory recall, difficulty processing competing auditory stimuli, and difficulty initiating communicative exchanges.
You’d think this would make interacting with people difficult, and it does. I mostly keep to myself, hesitate to make new friends, and struggle to maintain current acquaintances. I encounter loneliness and depression because my intellectual limitations cause basic social interactions to be often disappointing and at worst anxiety-inducing. As I write this I’m avoiding leaving my bedroom because my living-room is full of nice, fun people who would want to talk to me if I went out there, and this is one of those 9 times out of 10 where I just can’t keep up.
Paradoxically I’ve had several relationships, a few long-time close friends, and I’m pretty active in my local theatre community. Sometimes I do very well, I just have to find people who embrace the pace at which I operate.
If at this point you are thinking of me as brave, I ask for a moment of pause. I am not brave for having this disability. What I am brave for, is having this disability in a world that wishes I didn’t have one.
The defect I have, called CHARGE Syndrome, usually causes complete deaf-blindness and the mental impairments are almost always extremely severe. When I was diagnosed as an infant my family was told by doctors not to expect an intellectually proficient child.
Obviously it would turn out that I was smart, as I could read a newspaper at the age of four. This discovery caused two things to happen, one of them great and the other debilitating. One, my intellectual expression was valued and encouraged to a very heightened degree. Two, my family saw me as “not-disabled”.
You might be thinking “What’s so bad about not being seen as disabled?” Well, it does have its perks. I have a sex life. People don’t tend to patronize my intellectual achievements. It can be nice. Remember the symptoms I listed, though. Sensory processing issues. Anxiety. Difficulty with initiation and memory.
Now imagine me living in the boonies as a sixteen year old, sitting at a steering wheel and being expected to learn how to drive. Now imagine me being told I wasn’t “man enough” when I couldn’t do it.
Because I was reading the newspaper and memorizing hockey stats when I was four, it was just taken on faith that I had no real mental impairments. There was nothing special about my needs. I was gonna be just a regular boy, and then a regular man — blind and deaf on one side of course, but that’s all.
My parents were so keen on my being neurotypical, they never told me about my disability as a young child. Obviously I knew about my eyes and ears, but I didn’t even know I had CHARGE Syndrome specifically until I saw it on a document when I was 12. CHARGE is an acronym; the “R” stands for “general retardation”. “Oh but you don’t have that“, a family member said.
And it seemed plausible. I was just a really odd kid who had trouble initiating conversations and making new friends — that got me called “pussy” and “fag”. I was terribly uncoordinated, which got me picked on for not being athletic enough. If I forgot medication at home I “lacked responsibility” and if I couldn’t find words when I was expected to speak I “lacked initiative.” I was also small in stature and an emotionally vulnerable kid.
Because I was seen as “not disabled”, all those qualities were taken to be “not man enough,” and for a long time I believed that was the case. After all, I didn’t really know they were mental impairments, I just thought I was an awkward guy.
It wasn’t until last year when a mental health flare up caused me to no longer be able to work that I took a deep inventory of my mental capacity and finally did some thorough research of CHARGE Syndrome. I read into the memory effects, the communicative effects, the auditory/visual processing effects…
I found a lifetime of memories of being chastised for behaviours that A) I was actually displaying because of an intellectual disability and B) Were deemed inferior because of people’s expectations of an able-bodied heterosexual cisgender male.
If you’re a man in this world you’ve been told a thousand ways to “man up”. Be more independent. Need less emotional support. Go start a conversation. Make the first move. Do not be weak. Have It Be Basically Expected That You’re Okay.
That can be hard enough without a disability.
Ideal masculinity is bad enough as it is. Most of us agree on this. Through my experience of disability I have been able to see how ideal masculinity is a kind of ableism of the human spirit, cutting us off from ourselves and others. Ideal masculinity plus disability creates a very specific axis of oppression wherein you’re expected to be bulletproof, meanwhile you’re especially bullet-riddled.
Ideal masculinity means keeping your limitations hidden. Disability is limitation, and so I live in the intersection between a set of limitations and a set of rules telling me to hide them.
I want to be clear that I still benefit from some aspects of male privilege, and can access certain benefits of being disabled as well, and my aim is not that you see my suffering as being more special than any other group’s. I believe I have been pushed far too hard, and yet I think I’ve been pushed in ways that also shouldn’t happen to any non-disabled male or to anyone with a disability who isn’t a cis man. My point is to show how the detriments of masculinity and disability amplify each other. My point is that men are taught to suffer in silence, which makes our experience of disability (visible or invisible) a uniquely quiet one.
I hear the voices of fun people in my living-room, laughing and socializing. They don’t know the specifics of my intellectual limits, which is fair as I am am still learning them myself. To those who would question my courage in not leaving my room to interact with them, I would ask you to spend a bit of time at this intersection. I will spend time at yours, as all of us would benefit from time spent where other people’s experiences cross. I just need some patience. I just need to really know I won’t be pushed.