“Coming out as disabled”

Before I came out as disabled, I came out as a lesbian, then later on as a bisexual, then queer. I even came out as black, because to be honest I was in massive denial about my skin colour. It took a lot to do those actions. But the hardest, and the most impacting “coming out” for me, was coming out as disabled.

 

When I tell people about my “coming out” as a lesbian story; which is full of homophobic bullying, self-harm, bricks, section 28 etc. I realise how much of that time I’ve blocked out. Because during those years, at the tender age of 13, being gay wasn’t the biggest issue. Yes the bullying was pretty hard, being spat at, or assaulted nearly every day but I’ve blocked it all out, because at the time I had bigger issues on my plate. Trying to get dressed by myself, feed myself or even manage to lift a cup of water to my own mouth; that was frankly the most pressing issue, let alone the socialized homophobia that my school refused to acknowledge. Managing debilitating pain, swelling, and stiffness in most joints in my body to the point of being bed bound, was what sent me into a crippling depression. That was me. Aged 13 and very much disabled with Rheumatoid Arthritis newly diagnosed. The only thing was. You couldn’t see it. If I couldn’t walk, simple: I didn’t go into school. So no one ever saw me in wheelchair. No one knew, and no one could see. No would have believed me. People still don’t believe me. And I never talked about it; I never talked about the years of self-harm, because I hated what my body did to me. It was my fault I was like this. It was my fault I couldn’t function like normal people. It was my fault I developed depression, after the diagnosis of Rheumatoid arthritis. It was my fault I couldn’t walk, or write, cut up my own food. I was a failure, I couldn’t get into school, and I was never going to get those A*s everyone said I was going to achieve. I just couldn’t. After counselling and numerous years of therapy sessions, after finally realising none of it was my fault, that even if it’s hard (or really hard) sometimes, I could still manage this disease, and someone would love me, even though I was like this. That I was intelligent, and I could get a job, and yes I could go to university. Even after all this. After all the hard work to earn a place at a leading art university in London, after all the progress, nothing could have prepared me for the colossal drop that took place.

 

It took me till university, to understand the importance of naming yourself. Even though I had lived away from the parental house since I was 18, it took the harsh shock of moving away from my support network of my very loving, but claustrophobic parents, to understand how much this disability was part of my life, and how dependant on others I was. If I didn’t start telling people, or demanding support, I’d go unnoticed. I’d slip under the radar. And in my first year of university, that’s exactly what happened. I lost a year of university; that’s £3,445 down the drain. I didn’t attend any of my classes, I didn’t do any work, any work I did do, I told myself it wasn’t good enough. Here was me who’d got a distinction at foundation, whose tutor at Art College had begged them to pursue an art degree. But I felt miserable, isolated and I fell into a deep depression, and nobody knew. “oh but you don’t look disabled” “you dress so nicely!” These are comments that people say to me quite regularly. (Can someone please tell me what dress has got to do with being disabled?) I used to not be able to leave the house for hours. I would sit there making myself get dressed, pouring pain killers down my throat, trying to scrape into university and get an education. I had to make myself look ‘done’ – there was no way I would leave the house looking like a pile of shame. Never mind that your hand froze this morning, and you had to wait 2 hours before you could even begin to be mobile again and like, get up. Because if I didn’t look the part: dressed nicely, my hair and make-up done, then everyone would know I wasn’t ok. Right?

I’ve wasted hours of my life perfecting that lie. Doing my make-up, taking pride in how I look, because I thought to myself, “god damn no one is going to know that I’m sick”. The fear of rejection, of cruelty, of being looked down, and of people not understanding; It was somehow better that no one knew. But I got more stressed that I wasn’t doing well at uni, and my mental and physical health suffered. I struggled to look after myself and manage my pain and the frequent flare ups. I missed hospital appointments and my vital blood tests, which meant I couldn’t get my medicine; and you can guess what happened next? I got hideously ill. Had to have emergency injections. And there was no one but myself to help me. Because I hadn’t told anyone, and no one knew how ill I was, not even my closest friends, who knew I had RA, I kept them in the dark. I was ashamed of how bad I’d let it become. It was almost easier to just lie and pretended it was ok. But I ended up in hospital.

 

Coming out as disabled, meant I realised you need to identify your own needs to be able to ask the services in place to help you. And they’re there, mostly, the services are there, you just need to knock on the door. And if they aren’t you need to bang down that door. At the time I tried to get help from my university but they didn’t know how to support ‘physically’ disabled people, they knew how to dish out ergonomic chairs, but they didn’t understand the level of support I really needed. And I suffered. But the next time I got ill, I told them about it, and it was easier to manage. The universities disabled support team is now more accessible and visible, after I complained about my experience. Meaning other students won’t have to suffer like I did. For me it meant I learnt how to practically manage my disease on my own, to manage my time, and be independent. But to also not beat myself up if I couldn’t do something, or everything on my list. And I still struggle, every single day is a gamble, and only you can know your own limits. But most importantly I feel no shame, I feel I have the right to say “I am disabled” and it doesn’t seem so scary, it’s just part of what goes on in my day to day life. And no one should EVER look down on me, or pity me or alienate me because of it. Coming out can of course help you get the direct help that you need, but it’s also about prioritising you, and making it just a part (difficult part yes, I’m not saying it’s easy, hell no) of what happens in your life. All sorts of ‘regular’ people like yourself are disabled and coming out increases people’s awareness that anyone can be sick, impaired, disabled, you might just not know it yet. It takes courage to come out especially when you have a hidden disability, but when you do say it out loud it can be powerful in naming yourself. If you speak out, your voice will be heard, and there is no shame in speaking out about your needs, you are important, and only your voice can articulate that.


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