Does Disability Define Me?

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.

It’s just something I wanted to do, to show that we are who we are, regardless of our imperfections, which just makes us to be perfect in our own way.

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,

I did some soul searching as to why I never even considered writing a disabled character, when I officially am registered as a disabled person. Sort of. And if I’m being honest, exactly that’s why.

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.

As I’ve been living with this all my life I honestly don’t even consider it to be an issue, as it does not affect my everyday life in any way.

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).

All my life I’ve been trying really hard to hide the fact there was anything “wrong” with me.

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.

I’ve been always kind of ashamed of my disability in a way. I just wanted people to treat me like a normal person – which I am really 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)?

But the thing is, the reactions of strangers do make me think it’s something I need to be ashamed of.

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.

It would only mean that I finally know what I have to work on or around more likely. It wouldn’t mean I’m any less as a person, it would just mean I could finally start to understand why I am like I am.

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.

For the first time ever, I felt like wanting to write such a character. It’s and odd feeling, really. I’m still not sure if I’m “qualified” to do such a thing or if I’ll be able to do it right, or even if it’s a one time only thing. But for now, for this story, for this character it feels right.

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.

Every person is different, everyone deals with problems on their own way but that does not mean they are more or less for it as a person.

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.

11 thoughts on “Does Disability Define Me?

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  1. Thank-you so much for this insight. I myself am autistic, and have experienced crippling anxiety and depression over the years. I have battled with my own beliefs and evaluations of it for years. This resulted in me telling myself “you are normal”. But I always felt myself to be lesser of a mortal because I always fell short of the idealised self I had in my head. Only now, at age 37, can I allow myself to accept the differences and allow myself to acknowledge difficult days are part and parcel of my world. But that’s ok. Some days I’ll feel strong enough to cope and other days I just won’t be- those days are when I need my friends and family more.
    I really enjoyed reading this- somehow knowing other awesome professionals, like you, struggle and keep going, helps to remind me that we’re human (although I am a totally cool superhuman fictional character when I write my fantasy WIP). And reinforces the notion that awesomeness comes with its own barriers to overcome. Keep on being wonderful you!

    Liked by 2 people

    1. Thank you so much for reading and your comment! As you say, there are good days and there are bad ones. It’s all about coping and accepting ourselves I guess. I’m still learning this and maybe I’ll never be 100% satisfied with myself, but at least I try. It also definitely helps knowing there are people out there having similar struggles.

      Like

  2. Very courageous of you to post, and to be so open to the community. It’s a great reminder to us all, that behind every slick website, is a living, breathing person.

    Liked by 1 person

  3. The honest truth is that we all at some point feel ashamed of our disabilities. From birth the world tries to tells us we’re different, and that different means wrong, and we believe it. We believe it because we feel different. But in the end, we have to convince ourselves that different doesn’t mean wrong. And it takes a long time to do that, at least it did for me. To this day, I still try.

    Your struggles don’t invalidate other people’s struggles. We never have to feel ashamed for hurting, because that’s only human.

    Rly liked how sincerely you spoke abt this theme. Thanks for sharing this!

    Liked by 1 person

    1. True, you pretty much nailed it. The more I talk to people – gasp! – the more I realise that everyone struggles with something. Be it disability or something else. And that’s okay. That’s what makes us human I guess.

      Anyway, thanks for reading and your kind words 😊

      Liked by 1 person

  4. This is a really good post, Timy. And it’s interesting that you bring up the ways your physical condition and mental condition differ. I’m autistic, have anxiety disorder, and am (undiagnosed) ADD so … yeah. I get the mental health side of it at least.

    Also, **** anyone who infantilises you or patronises you based on their own incorrect or idiotic assumptions.

    Anyway! One of the things about your post that really stuck with me was that you hadn’t much written about disabled characters before, and that’s something that I’m going through now as well. I think I wrote many characters that had similar mental traits to me but I didn’t consciously write that way. Now I’m trying to be more intentional and to write the kind of rep I wish was out there for me to read, and it’s actually a really great feeling. It’s cool to be going through a similar writing thing. 🙂

    Liked by 1 person

    1. Thank you! Sorry you are dealing with all that…

      I think I just didn’t want to go deeper into the topic because that would have meant to look into myself and… yeah, no, I didn’t want to go there. But we all know characters are assholes and have their own ideas, so who knows how I’m going to go forward with this? But as you say, it’s nice to have people with similar experiences 🙂

      Liked by 1 person

  5. I remember when you posted about this before. Then and now I don’t think I have anything I can say that speaks to it without sounding condescending because I’ve not gone through what you have and what you still experience. But…I can say once again that you are a loved and cherished part of this community. At least to me. And I suspect to your team and others. I always look forward to your contributions here and this community would be less without you being a part of it. The extent to which your disability defines you is yours to explore I think. But who you are here, disability or not, is the Timy we know and want as part of us. If you reveal more of yourself (because let’s be honest all of us present only a part of who we are online) then that’s awesome. If you don’t that’s fine too. I’m not sure where I’m going with this except to say I appreciate these posts and they make me pause and reflect on who I am and on my friendships. And I really really like getting to know my friends (online or otherwise) more. Hope we get to meet in person one day and maybe a group of us all hang out and enjoy each other’s company, talk about books and authors and other things and just enjoy the moment and each other’s presence. Keep it up…you’re doing great.

    Liked by 1 person

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