There’s Sweet FA Wrong With Me!

I and approximately 50 people in Northern Ireland have this little known condition, Friedreich Ataxia. Friedreich Ataxia is a genetic disorder which attacks the nervous system; mobility, speech, hearing and coordination are affected. My parents unknowingly were both carriers of the gene, so each of their seven children had a one in four chance of developing Friedreich Ataxia. As fate would have it myself and three of my siblings have it. The thought that I might develop the disease was not a big worry, perhaps because from my older siblings I knew what to expect. It was very slow to develop and gave me time to acclimatise.

During my teens most people didn’t notice anything, but I did because I wasn’t any good at running or handball and such like. I think people put it down to my being smaller, therefore I couldn’t be sporty. Towards the end of my school years, an observant teacher noticed I was particularly slow at taking things down from the board. He was the first person I told and I still remember the look of shock on his face when I explained. Since my impairment became apparent, “What’s wrong with you?” is the question I get asked the most.

I at first treated this question with relish, as for several years people assumed I was drunk. I thought people were genuinely interested in the intricacies of my impairment ‘Friedreich Ataxia’. But alas, as people couldn’t get their head round the name – “Freewha? Free drink and a taxi?” I would explain the genetic structure of how both my parents were unknowingly carriers of this rare condition. Eyes would glaze over at the ‘science bit’ and they would reply, “So you were in an accident then”?

It is a genetic disorder named after the Dr Friedreich who first identified it in the 1860s. Of course, in the world of impairments you have CP for Cerebral Palsy or MS for Multiple Sclerosis. As luck would have it I could announce “There is FA wrong with me”. This reply was seen as rude rather than clever.

So next I started telling people I had MS. They could nod knowingly and tell me how brave I was. This worked for a number of years but then, coincidently, one of my best friends was diagnosed with MS. I felt uncomfortable misrepresenting my friend’s impairment. I then told people I had been in a motorbike accident. Well by people, I mean boys. All that leather and speed makes a sexy combination, one has to take advantage wherever one can. Anyway this worked well until one night a man asked in reply, “What type of bike was it?” Well with his short hair and no visible tattoos, how was I to know he was a biker?

I think Friedreich Ataxia has given me more opportunities. I went to university in my 20’s, which I probably would never otherwise have done. So, if the world emphasises what I can’t do as a disabled woman, I discovered higher education was something I could do. Currently I’m employed as a Mentor and Facilitator for the Service User Support Team within Leonard Cheshire Disability which provides housing and other support services for disabled people across the UK. I work freelance to offer training on Direct Payments and Disability Equality Training. I have an eleven year old and a great family and friends and I am thankful for that.

Recently when people ask, “What’s wrong with you?” I invariably say “I have a cold.” I enjoy the confusion and the flustered gesturing towards my wheelchair. “I meant that,” they say. I know I should answer from the Social Model perspective, and respond how I have impairment and it is the world around me which is ‘wrong’ and disables me but it’s more fun teasing the myths and misconceptions of life. Nowadays I tell people it’s none of their business.

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