I am living in a situation most people fear. Living with a debilitating disability from the age of 15 is not the ideal, in fact chronic illness seems to be people’s worst nightmare. Yet I am happy and content with my life; even proud of it. Nobody has any right to assume my life is anything less than that. Nobody has any right to pity me. I’ve been diagnosed with Friedreich’s Ataxia for seven years now, one of the first lessons this taught me was that the media and subsequently society treats disabled people as young and innocent, I read a lot of books and watched a lot of films and couldn’t find myself represented anywhere. I was constantly told by people that they were “so sorry”, which over time, knocked my confidence and I began to believe what I was hearing, that my life was sad and deserved to be pitied, I quickly began to assume the role of being helpless. It is much easier for us all to believe that sick people are naive and unaware of the severity of their situation, and therefore less affected and suffering less. Just imagine looking at someone with a debilitating chronic illness and seeing them as a complex, intelligent human being who understands the reality of their situation and more than that, wouldn’t change a thing. If you can’t do that, it says a lot more about you than it does about me. In these last seven years I have realised people have strange ways of addressing my disability, but the one that stands out the most is being patronised. For example, people speaking VERY slowly to me or simply ignoring me and just speaking to the person I’m with. I believe that this attitude is not a direct consequence of the lack of awareness for my condition, but more related to the way people choose (consciously or subconsciously) to frame disability in general. This framework was crucial to me understanding why people think it’s okay to pat me on the head and congratulate me for getting out of bed in the morning. I used to shy away from identifying as disabled, I didn’t want to associate with the stigma attached to it. This is not surprising, as it was drilled into me that this was a negative word. Recently, someone who knows me quite well made the comment that “if it wasn’t for your wheelchair you would look normal”, a similar backhanded compliment to “you’re too pretty to be in a wheelchair”, which I have also received. The truth is, disabled is not a slur, it is not offensive, and it has no bearing on how I look. It is just another word I can use to epitomise who I am, as simple as small or stubborn. It has taken me longer than I care to admit, to realising that instead of rejecting the word disabled because of its negative connotations, it is much more empowering to reject the negative connotations society places on disability. The western world is obsessed with change, making improvements, modifications and advancements. These are all buzz words we hear on the daily. Yet as a society, we dismiss disabled people. Innovation does not come from a perfect person living a perfect life with no challenges. Innovation is what happens when we listen to those who live differently to the norm, who deal with things the average person can’t even imagine. Which is why people with disabilities have much more to contribute than we get credit for. A few of my best friends have the same condition as me and they are some of the most resilient, intelligent, adaptable people I know, and the world would benefit from listening to them. After all, change is mandatory, but survival isn’t. Friedreich’s Ataxia is a multidisciplinary disease, meaning there aren’t many parts of me it doesn’t affect. Despite this, the worst ‘symptom’ of my condition is not my heart condition or scoliosis or fatigue or all the other grim affects you can find on google, but how other people treat me. It’s a strange concept that because of my physical condition I have to fight for people to treat me with the same respect they would any other stranger, but there is a fine line between changing how the majority think about those with disabilities and shrinking myself down so that people don’t feel awkward around me. The latter is something I refuse to do... It is not my responsibility to make others feel comfortable about my disability. Would you like to write a guest blog for our #RareYouthProject? Please contact Catherine at cdevaal@rarerevolutionmagazine.com For more information about Friedreich Ataxia visit https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Friedreichs-Ataxia-Fact-Sheet
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AuthorThis blog is contributed to by the rare youth project community Archives
October 2019
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