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Disfigured and Disability: My Story

So I don't really mention it online but I have a disability. 

Due to complications at birth, I developed a type of cerebral palsy called left-sided hemiplegia, which is a weakness that affects the left side of my body, especially my left hand. I don't have it severely and my condition is a lot better than some people. 

Because of this, I don't really mention that much. For much of my life, I have tried to hide my disability because I always compared myself to others. A lot of the time, I didn't identify with the label. My condition and I have a complicated relationship. 

That is until I read Disfigured by Amanda Leduc. 

OK. I'm not going to say that this book changed my life and the way that I explored my own disability but it illustrated so much of what I felt in my brain. 

I have grown up not really having someone to look to up in terms of my disability. No one I knew had the same condition as me until I was 17 and one of my sister's friend had it. This is strange because it affects 1 in 1000 people. But when I started reading Disfigured something clicked.  

I was listening and reading to something that connected wholeheartedly to me and I saw what it meant to be represented. 

I was on the verge of tears. 

No me and Amanda didn't share the same experience. As I have mentioned mine was based around birth. We don't really know truly how it happened but I did not have a cyst and I did not have surgeries throughout my childhood. 

I did, however, relate to the fact that one of my legs is shorter than the others, the unequal hips and the chronic pain, I often have pain in both my hips and my knees. It's a fun time. 

The thing was that I had no idea that this was a symptom of my disability. To me this was normal and I thought that I was kind of alone. To see someone go through the same situation as I was refreshing. 

I think this does prove how much ableism goes on in society and my family. No one including my family knows about my condition. We go on. I have to live with consistent comments about how I can improve my hand, if only if I do exercises that I was given when I was ten. 

I have to live with the fact that my Nan had a similar thing that happened when an operation went wrong and she managed to cure it.

As a result, I must too. 

The truth is that I don't want it to happen to me because my disability is me and without it, I wouldn't know what to do. I know that this was wrong. I grew up thinking that this just happened to me but it doesn't. 

It happens to every disabled person. 

Coming from Britain, known for its stiff upper lip, for the longest time I don't think that I thought people saw me as disabled. In primary school, I remember being accepted by my peers. Similarly in Secondary school, I don't remember being picked on for my disability. 

Yes, I always got picked last for sports teams, I was also fat at school and my coordination (which is affected by my condition) makes me and sports a nightmare. I was also shy and anxious and saw this all the time rather than my disability. 

I didn't see myself as having a disability. 

Compared to the representation that I saw on TV, when there was some, they were always users in a wheelchair or were restricted by their condition. I, on the other hand, was free to be me. I didn't need assistance getting dressed and was also one of the smartest in the room in comparison to my peers. 

I didn't see myself at a disadvantage. 

When I saw other disabled people, it made me feel uncomfortable knowing that I could be viewed in a similar light as them. I looked away. I felt ashamed of doing it but I didn't know what else to do. 

As a disabled person, I was being ableist.

I know that ableism is a problem and even though I am so much better than I was. Being ableist is something that I have to acknowledge every day. 

Disfigured covers this as a central argument. Fairytales often portray the negatives about having a disability and the only way to be happy is if this is overcome. 

When the Olympics came to London in 2012, my Dad managed to get tickets for the Paralympics Games. As it was so close to home, I was bombarded with small comments about how I could do that if I wanted to. Throw away the fact that I had no interest in sports and P.E. teachers didn't understand at all my condition. 

I could overcome my condition. I could be great. I could be an acceptable disabled person. 

Once I reach 16, the way that my disability was treated by others became apparent. One of the earliest things was when I was doing NCS, a facilitator say that he had never felt someone with such a clicky wrist. (Often my joints click and they don't hurt.) When applying for jobs, I always stated that I would have a disability, sometimes I would get an interview, sometimes I wouldn't. Other times, I got interviews, they told me that I would be fine. 

I would see a rejection email shortly after. 

Even when in a job, I know that I am treated differently from my peers. If someone else does a job, they get shouted at for being too slow. 

I don't. 

People use my disability as an excuse, "it's fine, you have a reason to be slow." Even though, I take longer because I am doing the job properly and cleaning up everyone else's mistakes. 

Even then, no one tells me off when I do something wrong. 

My disability is questioned, even though I am happy to do something. If I do something differently I get asked about it. 

Don't get me wrong, I don't mind that people ask but I know they do so when it's weird.

Sometimes people don't mention it at all and you know, they know. They just don't mention it. When they do mention it, they skate around the subject. Scared that I will be offended or that they have said something wrong. 

I know all of this takes place in life because we are surrounded by a multitude of ableist ideas that are just a foundation on how we view disabled people. Through books, films and fairytales, these are always exacerbated and not questioned. 

I do have hope though. 

Having seen the limit in representation and for the longest time, being scared of writing about someone like me. 

Because I didn't see someone like me. 

With the growth of TikTok and disabled creators being themselves, seeing books like Disfigured and the growth of the spoonie movement (which I do relate to as I do get pain and extreme tiredness after work), I believe that ableism can be challenged. 

One day at a time. 

One piece of positive representation at a time. 

See you soon, 

Amy

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