Tuesday, 21 July 2009

11 My Health and struggles with it including discrimination against disabilities

Towards the end of the 1990’s my disability was causing me more and more problems both as the disability and as a great pressure on my life as a whole. Because I was in a manual job and on my feet for long periods every day the pain was so excruciating that my weekend off wasn’t enough for me to recover in any way for the next week. I had falsely taken and achieved a City and Guilds in management, not just Printing Management, but for any industry. The promise was that I would move over to a more stable management/supervisor role within the company with, I hasten to add, financial reward. The benefits of what I was promised disappeared and it became obvious that the boss had a grudge against to me and also my disability, it can only be described as discrimination to disabilities.

The remarks that I endured on a daily/weekly basis were hurtful as I am sure anyone would feel the same. I was and still am in a position where because of my Muscular Dystrophy I am entitled to help with transport to get around, so I had and still have a Mobility vehicle and as such only have to put petrol in as the road tax, the punctures, replacement of tyres services and exhaust etc are covered in the full payment of the Disability Living Allowance. As well as this I was also allowed a disabled working tax credit because I was working full time in what transpired to be a low paid job.

Some of the remarks were:-

  • I wish I could get free tyres for my car.
  • If only I got road tax for free.
  • I don’t get any tax relief, if fact I pay more tax because I own the business.
  • Free car, I wouldn’t complain.

There were many other comments which would appear to be trivial grumbling but I would say they were hurtful to me at the time.

When I was 22 I was signed off from the medical hospitals saying that there wasn’t much more that could be done to help my cause. Only when changing my GP in 1989/2000 to a new one in the same practice was I informed that I should really be under a Neurologist, as well as a blood physician as I have clotting problems and also a surgical specialist with regards to my twisted/deformed feet for custom footwear to give me stability for standing still and also walking small distances. March 2002 came and I could no longer manage to work because of the danger of falling, which was a near daily occurrence. My Neurologist agreed that I had done so well in working for so long and felt that he could happily sign me off work for a long absence from work and later for an indefinate period of time. March 2002 was the last time that I worked and whilst my health has deteriorated, my life has been enhanced with not having the daily struggles of working and the pain which came with it, although I do have chronic pain to this day.

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I am now 50 in 2014, married with one son who is 26 in 2014, doesn't seem that long since he was born. Unfortunately I have a condition / disability S.M.A. better known as Spinal Muscular Atrophy, which falls into the category of Muscular Dystrophy. This is a degenerative condition which as time goes by, the muscle wastage increases. A wheelchair is the final destination for me, although I do have a power chair, which I have to use when I am out and about. I do drive and the car is my only real comfort to enable me to go out. I have to be careful with carving knives as I also have a blood disease, well two actually - Platelet Storage Pool disease and Von Willebrand disease. Both of these are a prolonged time of bleeding compared to someone who hasn't got the conditions. I try to be positive and when you look around then you realise that there are people far worse off, than me. I was in printing and it was a heavy, manual job, involving running printing presses, handling very heavy sheets of paper. Because of my disability, illness and chronic pain I had to stop working in 2002 at the age of 39. As such I can class myself as retired.