“Before my diagnosis with multiple sclerosis, I knew what ‘the disabled’ looked like and I’m sure I had the right instincts towards ‘them’. But I had no understanding of what it was like to be ‘disabled’ and no understanding of the myriad obstacles — born out of discrimination or disinclination, bureaucracy or bullying, ineptitude or ignorance, a failure of the imagination or a failure of the will — which disabled people have to face on an almost daily basis. In short I was not prepared for disability.”
Alastair Hignell CBE.
Alastair Hignell played Rugby Union for England, was a county cricketer, and a sports presenter for the BBC. He was diagnosed with multiple sclerosis in 1999. As part of the Leonard Cheshire 100 Years of Inspiration he posted a blog about his experiences as a disabled person here link.
The title of this particular blog entry is a direct quite from what Alastair Hignell wrote. The fact is that few if anyone actually understand what it is to be ‘disabled’ unless they can experience it for themselves. There are people like carers, whether family or volunteers or professionals, who get an insight into the kind of problems that disabled people encounter, but that is not the same as experiencing them for themselves from a purely subjective point of view.
In truth no one can comprehend the myriad of problems that being disabled can entail, not even a disabled person, simply because every disabled person is unique and the causes of disability are themselves too numerous to count. For this reason I do not get routinely upset about most of the problems that I encounter as a disabled person myself. I get it that most people simply don’t get it. The kind of problems that I do get annoyed about, however, are the ones listed in Alastair Hignell’s quote above, those that are caused by discrimination, disinclination, bureaucracy, bullying, ineptitude, ignorance, and failure of reason.
One of the things that does really annoy me is the assumption that some people make that being disabled is not that bad because of all the benefits that come with it. I am being serious here. I have had people tell me this to my face. There is no benefit that makes being disabled worthwhile, certainly not from my point of view, but then that is not what they are talking about. Invariably they are talking about the benefits that come from legislation and social security, so here’s a quick review of what this means to me.
- I currently receive Disability Living Allowance (DLA). However, it took me over 20 years to get it and I am likely to lose it when I am reassessed for the lower Personal Independence Payment (PIP) by the Benefits Agency’s contractor. My condition is so rare that even members of the medical fraternity do not know what it is or what problems it gives rise to, which is why it took so long to qualify for DLA. The DLA does help pay for my monthly medication, however.
- I have a car but this is not a benefit. I bought the car myself and I had to pay an extra £1,800 to have it adapted to hand controls so that I could driver it. I had to take out a loan that paid for both the car and the adaptations. On my driving test my examiner asked me how many cars I had tested before choosing the one I was in? I told them that I could not afford to test drive any cars because of the cost of having them adapted!
- I have a Blue Badge that permits me to park in reserved disability parking bays. I am assessed for this permit on a regular basis but the non-disabled people who find such parking bays conveniently close to ATMs and mothers with children who also think that they have a right to use them are not. It also does not exempt me from parking charges. I have to pay for the Blue Badge at every assessment as well.
- I have boots that are custom made for me. They are ugly. I refer to them as my ‘Frankenstein boots’ because they are over-large as I also wear leg splints that have to be accommodated by them. I cannot wear anything else, even on holiday. To have them repaired I have to return them to the hospital and make do with a pair that do not fit so well.
- I am protected by disability legislation. In theory, yes, in practice, only if I make a complaint. Not so long ago I proved that my employer discriminated against me on the grounds of disability. Winning did not change anything, except may be labelled me a trouble maker. I still did not get the job I had applied for. Disabled people have been proven to earn less than the majority of working people as they are often overlooked for promotion. A former employer once told me that I should have been glad to just have a job and not expect to get paid the same as ‘normal’ people.
I could go on but it would probably make for tedious reading. The point I am trying to make is that if someone offered me a miracle cure for my disability then there is not one single ‘benefit’ that I can think of that would cause me to turn that cure down. There is no real benefit to being disabled as far as I am concerned. For all the perceived benefits that some people actually begrudged the disabled for receiving, especially politicians it would appear, the problems, the pain, the loss of independence, the mistreatment, the decline in dignity, none of it is made up for. Nothing prepares you for disability and very little makes it any better, except if you are lucky enough to have family and friends who care for you, but you do not have to be disabled to enjoy that.