I’m not a Superhero, but here’s my ‘Origin Story’

I have just finished the first instalment of Department of Ability, a brilliant new comic by my friend Dan White, where the heroes have disabilities and fight against the ‘Establishment’ in a bid to save our planet. In a world saturated with superheroes, it is great to portray disability in such a positive light – but aren’t all disabled people superheroes?

Wikipedia describes a Superhero as “a type of heroic stock character, usually possessing supernatural or superhuman powers, who is dedicated to fighting the evil of their universe, protecting the public, and usually battling supervillains.”

At first, this does not sound like most disabled people. Sure, we’re all battling our super-natural symptoms and the closest thing we get to fighting the evil of our Universe is our constant battles against a mostly ignorant or hostile society, Institutions that are supposed to support us, and service providers who are supposed to offer services that include everyone. We know what being different feels like. So, what else do disabled people and superheroes have in common? Both have an origin story.

An origin story is a story-telling tradition that gives the reader clues as to how a character sees and interacts with the world around them. The Superhero Reader (2013), explains that such “stories about destroyed worlds, murdered parents, genetic mutations, and mysterious power-giving wizards is to realize the degree to which the superhero genre is about transformation, about identity, about difference, and about the tension between psychological rigidity and a flexible and fluid sense of human nature.”[1]

Holy wheelchairs! Transformation, identity and difference, this is what disability is about too! Our society understands both disabled people and superheroes in the same ways.

But what about Paralympians – aren’t they superheroes?

Team GB

Kind of, but the idea that our Paralympians are ‘true disabled superheroes’ and overcoming disability is something all disabled people should aspire to is very dangerous. Nothing against Paralympians, I know a few iand how much work they put in to be the best. I went to the London 2012 Paralympic games in London and greatly enjoyed the sense of inclusion that I found there. But it is that idea, of all disabled people having to achieve against adversity to demonstrate their ‘worthiness’ to an ableist society, that is just wrong.

What happened to you?

Our origin stories are constantly and clumsily being demanded by others. On seeing a disabled person, I think the average bystander has to process that information in relation to themselves. Often curious and wanting to help. This is natural human behaviour, but the problem is with the judgement behind it. It’s the ableist idea that disabled people are broken, and hold no value or a right to privacy.

The way to get this information is to demand: ‘What happened to you?’ Now, it is understandable for children to be curious (their minds work differently), but adults should know better than to ask a deeply personal question to someone they don’t know. This is often followed by a series of even more personal questions, observations and/or an equally terrible anecdote about how they or a family member had to go in a wheelchair once and how awful it was for them.

As superheroes are obviously different too, I think they would also be constantly required to tell their origin stories in the same way.

So, what happened to me?

As an example of the transformation and search for identity that I have been through, I have chosen to share my ‘origin story’ with you here. It is deeply personal. If you read on, I would like you to donate to Ataxia UK in return.

My earliest memory of anything wrong with my balance was standing on a sandy beach as a child, with the clear water breaking over my feet. As the sea was sucked back, it felt as if the floor had disappeared, and I simply lost my balance and fell over. My Dad caught the moment on his video camera, it was a funny family moment, fondly revisited throughout the years. As I grew, my clumsiness and poor balance often came out in sports. I had to jog or walk on cross-country runs, finishing exhausted and last with my overweight classmates. My friends and Teachers were as mystified as I was. As far as I knew, there was no history of disability in my family. We all concluded it was a just a growth problem, which would right itself when my brain caught up with my body.

I was 14 when I was finally referred to a nearby city hospital for tests. I had electrical impulses passed painfully through my nerves to observe my muscle reaction. A few months later, my parents and I returned and were given very grim news. I was diagnosed with Friedreich’s Ataxia. An inherited neurological condition. It is progressive and as yet, incurable. I would be lucky to survive into my mid-thirties, at which point I would lose all control over my body and only be able to carry out automatic functions – blinking, breathing and swallowing. To add to this, I would also have a high chance of developing commonly associated complications along the way; diabetes, heart problems, curvature of the spine and feet, oh, and and loss of vision & hearing.

This shattering news was accompanied by paralysing fear, anger and deep denial and depression. My parents felt helpless too and were wracked with guilt. Without counselling or support, I turned inwards and grieved for all the things I thought I would never do. Well, the things an ableist society had conditioned me to see as real achievements anyway. I was also terrified of using a wheelchair thanks to the same social stigma. I was so angry at everyone. I felt like my life had ended right there. I spiralled into grief.

But my slow and painful death did not unfold as promised. Like all good stories, I start to turn things around. I reach rock-bottom, have a revelation, am saved, overcome adversity, seek redemption and along the way, manage to achieve all the things I never thought I could and much more besides. But these are my stories.

My Ataxia has progressed steadily over the last 30 years but thankfully, so has the understanding of the condition. Today, there are much simpler tests, better information and support for people and their families when they are diagnosed with Friedreich’s Ataxia. Now we are told that progression rates are different and can be greatly influenced by diet and exercise. Equipment, treatments and therapies have developed and are mostly funded by the State. Disabled people are encouraged to live independently, study or work if they choose.

A rare photo of Friedreich’s Ataxia

Disability has changed my life and I have had to try come to peace with it. It has helped me find the strength I need to carry on fighting to follow my dreams. It has taught me that only you can determine the quality of your own life. My relationship with my disability is a complex one. On bad days, my ataxia becomes my personal nemesis, a shadowy supervillain who has gleefully taken everything from me and knows it; laughing hysterically from just beyond my reach. I’m not a superhero by any means, but I know what it feels like to be different and to have to begin from nothing. Because of this, I am stronger than anyone I know.

April 2019

[1]  Hatfield, Charles; et al. (2013). The Superhero Reader. Jackson, Mississippi: University Press of Mississippi. p. 3. ISBN 9781617038068.


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