I have what is termed psychologically as “Neuro diversity” and it is a combination of severe dyspraxia, synesthesia and part dyslexia. I’ve been very fortunate that I was diagnosed by an excellent Educational Psychologist in his field who saw beyond disability but into the capabilities of human beings… unfortunately there are teachers out there who are clueless about the way people learn and communicate with eachother…. which I have always found particularly odd as teachers are there for learning and communication!
Same is true about my clubfoot, reading a fellow clubfooter’letter to her MP (below) made me think, well I don’t need crutches or a walking stick… so automatically I’m downsized to not having a disability…. only a disfigurement, and even then I am quite capable at walking so really, it looks aesthetically pleasing I am “fine”, they have seen much worse.
The problem with people telling us that is it disempowers us. We strive to be healthy, to not put on weight, to do as much exercise as is possible for us… but when we are told that it’s fine, that can be very uncomfortable for us to sit with. I know my disability is not as bad as other people’s disability. But my disability is NOT that I can’t walk 100m without considerable pain, it is in fact the opposite. I can NOT stand for long periods of time because it causes terrible pain which then causes me to not be able to walk.
I hate the uncompromising sorry sighs from practioners as they tell me to exercise more and I tell them I can’t in the way they specifically want me to exercise – the words “I can’t” are not to be seen as not believing in oneself – in fact the words “I can’t” are probably the bravest words said out of a club footed person’s mouth because they spend so much of the day doing everything they can in constant pain – yes I can run for the bus, but yes I will end up with a sprained ankle, and then yes I will have it swell up, and yes then I will have to take pain killers and then yes I will have to massage it which will inevitably cause it to cramp but I had to make that bus because I had to get to work. Or, yes I do walk down the escalators but that is because I can not stand for long periods of time without cramp. Yes I can stand on the escalators going up more so than the escalators going down because climbing escalators causes awful hip pain due to the imbalance between my legs.
But, someone said something the other day and it rung in my ears for ages after – I wish I had normal feet, that’s a given – but the reason why I want a disability badge and support when it comes to travelling is because of the constant fatigue and pain I have to battle against when doing all the things an average able bodied person is able to do. All I want is a bit of support to give me the same opportunities as an able bodied person… and that is a life without pain and fatigue. And that can happen without painkillers. How? Fro a disability badge I will be able to get a seat on public transport, I will be able to get support when I need it with the taxis to work scheme and it will help me be able to concentrate far more on my studies, my work and also my social life.
It pains me to hear people say I am making excuses for myself and that I do not need the disability support because I am not really disabled. Please tell me what can count as disabled? If a dyslexic person can have a special computer, systems and learning techniques to support with their studies, why can’t someone born with clubfeet just get the travel allowance and disability badge for a seat on the tube. I am not asking for benefits or money. I am able to work and to study, but I need that little bit of support so I don’t suffer with pain.
A deaf person can get disability support and travel allowance, so why can’t someone who went through painful and traumatic surgery, extensive years of physiotherapy and is seeing a chiropractor fortnightly, be able to just have that small amount of support back too.
How come when we are babies, a clubfoot is regarded as a “disability” but as soon as we become adults, it is not? It’s only a corrected disfigurement.
I just want to have a life free from pain and discomfort, where I don’t feel like crying because I have been standing on the tube for only 5 minutes and am experiencing vertigo due to my imbalance, pain in my hips and horrible cramps in the arch of my clubfoot.
