I was once a dancer, an acrobat, a runner and a climber. My body flowed with the rhythms of the world. I moved with grace and beauty. There were struggles; the early effects of my syndrome did take their toll, but I did not give in, I was a fighter, I was tough. No-one would have suspected how bad things were, nor how much worse they were about to become.
As I became increasingly disabled I noticed that the way people related to me started to change. There were two particular, noticeable trends in this: Firstly able-bodied people began to treat me differently, oddly. To some I seemed to become invisible; they would stand in front of me as though I wasn't there, take over a table that I was sitting at, walk in front of me when I used the disabled button to open doors and walk ahead, leaving me behind struggling to keep up. To others I seemed to become hyper-visible; they would stare at me, speak sharply to me for no apparent reason and, worst of all, laugh at me. Even middle-class professionals could find the sight of me a source of immense amusement.
I found myself wanting to hide away, to withdraw from the human race. Life would have been pretty unbearable had it not been for the second trend: Whilst many able-bodied people stopped connecting with me as a fellow human being, there seemed to be an increasingly strong connection with other disabled people. This was a connection that did not need to be spoken. It could be communicated easily and effectively as we passed each other by. It could happen in a momentary passing glance, or it could be built and held in a long slow approach. I felt that I had missed something very special through my able-bodied years. I felt blessed to be connecting with these people now in this way. I wondered whether I would ever really feel that I belonged in general society again.
Although my disability began to worsen rapidly and I was advised to apply for DLA it took me two years to be able to complete the forms. The questions took me into the full awfulness of what my life had become and I couldn't bear it. Each attempt to answer the questions brought me to tears and an overwhelming sense of despair. I became depressed. Eventually, with support and the incentive of necessity and desperation I got the forms completed and submitted. Hearing that I had been successful and that I would be given financial help with the costs of my mobility and care was a turning point for me. Of course receiving the money was a huge help. I was able to get equipment including a mobility scooter and hoist, and could pay for some personal help. I was getting a life again.
The DLA meant more than this though. It helped me maintain a sense of connection to the able-bodied world, a sense that there was some understanding and care out there. I no longer felt so alone and rejected. My gratitude to my fellow tax-payer was enormous. My sense of patriotism grew. Wasn't this just a glorious caring country?
I can hardly express the hurt and disappointment I now feel in response to the various government threats to disabled and carer support. It is shocking, disorientatingly so. My head and guts swirl with it. Strength fades from my limbs with it. My eyes sting with it. I have been naive. The understanding and care that I believed in is an illusion. We are alone and rejected. There is no glory in a nation that acts in this way.
Like many others I now have to prepare myself for reassessment. Not the forms this time. This time it will be a physical scrutiny by an employee of a private firm, a firm whose mandate is to significantly reduce the number of disabled people who can qualify for help. I will have to submit my body, my crippled, bent and broken body to the critical, sceptical gaze of this employee. I don't know if I can do this.
If you are one of the able-bodied people who think this is reasonable ask yourself; Is this what you would want for yourself or for your loved ones? But you probably don't think this could happen to you do you? You probably think disability is for others, not for people like you.
Remember, I was once a dancer, an acrobat, a runner and a climber. My body flowed with the rhythms of the world. I moved with grace and beauty. I was a fighter, I was tough. No-one would have suspected how bad things were about to become.
Are you sure it won't be you next?
Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011
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