This post was originally labelled as A Week in My Head post, but the more I thought about it, the more I thought it probably should be published on its own accord. Disability is a topic that we should talk about, because it has many forms and each case is as individual as we ourselves are. So, I decided to repost this article and add a few more thoughts.
I’m mostly going to talk about personal opinions, thoughts and experiences. I don’t write this to gain smypathy, but it’s something that’s been on my mind recently and I want to write about it. Some people said I was brave to share my story. I really don’t think so. I mean, it’s something that’s part of my life, part of me. It’s a fact, just like the colour of my eyes, or my hair (though I like to dye it time to time, so that fact is a bit of a liability). I don’t think I should be treated any differently. I don’t think I should be applaused just because I decided to make my story public.
Yeah, I know, it’s incredibly cheesy, but it’s true.
The other day, as I was sitting by my computer playing Facebook games, I’ve let my thoughts wander and they drifted toward a piece I am currently writing and am really excited about. Can’t say more about it at the moment, but it’s on my mind a lot. Without giving away too much details, it’s going to feature a disabled character. I’ve been writing stories ever since I can remember, but none of them ever had a disabled character. Well, if we don’t count that side character who was terminally ill. I wrote that back in 2006 and considered to be my best piece – reading it now I can say it’s very, very far from being my best, but it definitely still has that emotional impact I was aiming for. Anyway,
Let me explain.
I once wrote about this in a blog post about 2 years ago, but I don’t suppose many of you followed me back then, so let me fill you up first. As it stands, I happen to have a genetical disease called Silver-Russel syndrome. You can look it up on wikipedia if you will. It’s considered to be a type of dwarfism. I’m pretty much on the luckier side of it as it does not affect me much health-wise, but it does affect my appearance which always was my biggest issue regarding this. On top of it, I have myopia in my right eye, which means I don’t see much with it or at least not clearly.
Apart from some minor inconviences, such as my left eye being super sensitive to the smallest changes and so I need slight adjustments in my glasses maybe more frequently than my wallet would like. Like now, during a pandemic, when my frequented shop is out of business for the time being…
Anyway, while I’m considered to be only 50% healthy, I’ve rarely been sick or had any serious health problems (let’s not talk about the fence incident which ended up with me having a mild concussion and a few days in a hospital).
I hated people asking about my appearance or making comments about it, but most of all I hated the pitying looks I’ve received and that I was never really been taken seriously just because (I assume) I look “childish”. I’ve been really struggling with this a lot and it wasn’t until my twenties that I started to really come to terms with myself and stopped (well, tried really hard anyway) worrying about what other people might think about me. I can still see the occasional pitying look, the pointing, the sniggering when I’m out and about, but I learned to tune it out – by burying my nose in a book or a notebook or my phone, listening to music and generally just avoiding people’s eyes. It still takes an effort to look into a person’s eyes when I’m talking to someone. I just don’t want to see the pity or curiosity there. If I pretend it’s not there, then surely it’s not.
And that’s not necessarily a bad thing, might I add. I don’t like talking about it, though I’m more open about it now. Honestly, it could be worse and I think I migh be more ashamed of feeling ashamed by something seemingly trivial, when there are people out there with much more serious problems. Who I am to feel bad about myself, when in fact, I have a comfortable life, my disability does not affect me much in terms of health and I’m capable to do a lot of things and even have the brains for it (there was a good chance I would be born with serious mental problems, which turned out not to be the case)?
Which I know is bullshit, but trying to rationalise with myself when I feel utterly vulnerable does not work too well. Neither does listening to recordings of my voice. Holy hell do I hate that.
What I’ve learned in these past couple of years from this community is that disability has all kinds of forms. I might not be physically disabled but I am mentally. Not that I have an official confirmation of this, but I definitely will seek out a professional once lockdown gets lifted up somewhat. I definitely have anxiety problems and as a friend pointed out in one of our conversations, I might as well be on the spectrum. Though, once again, I’ve no official confirmation of that. Even so, it would make sense in many ways. My friend was freaking out that I would freak out about it, but honestly it just would be a confirmation what I kinda been suspecting for a while now.
My anxiety issues, my struggles to make bonds and – tied to this – why I am firm believer of the found family concept.
Going back to writing. I always ended up writing about characters who had the life I want to have, who were another, better version of me I guess. They had parts from me, but never the disability. I was determined to pretend there was nothing wrong with me. As I didn’t even want to acknowledge that part of myself, I flat out refused to write such characters. Admittedly, we are talking about teenager me, so that really doesn’t say much. But even now that I’m older and smarter, writing about a disabled character does not come easy. It wasn’t even in my plans or was something I deliberately wanted to include. One night as I was writing, my character just decided it for himself and I really didn’t have anything to say.
And that’s all that matters, right?
I believe having friends with different kind of disabilities and having some personal experiences myself gives me some understanding how to approach the topic, but I also know that I still have a lot to learn. About myself for one, and about others as well. As I said, disability has many forms and neither of them is above the others.
They might have different needs or preferences, but that doesn’t mean they don’t deserve to be treated like human beings. Kindness and understanding can go a long way. Believe me. I know.
And to answer my own question in the title: disability does not define me, but it’s still part of who I am.