I read this BBC article yesterday, which is a short profile of the Times Columnist Melanie Reid. A trained Journalist for 30 years, she started writing about her spinal injury in The Times under the heading Spinal Column. Melanie fell from her horse, and that initially caused what is termed Asia A Tetraplegia, a diagnosis of total severance of the spinal cord.
However, after a few months rehabilitation she began wiggling her toes and following intensive therapy she can manage a few shuffling steps. She steadfastly – or stubbornly – refuses to move from her remote house in Scotland, and has still only made small alterations to the fabric of the house. This extract is from the article at Ouch.
“She knows that publicly declaring that she can’t accept her physical limitations irritates and angers some of her disabled readers, and says that she is resented by them for saying she regrets “being stuck in disability”. She has written stories about having constant physiotherapy which has enabled her to shuffle a few steps, and is aware that it has led to some disabled people feeling betrayed and that they’re not trying hard enough. “There is that feeling that I’m letting the side down by being ‘a walker’,”
Last summer I wrote about the Hierarchy of Disability, so I was interested to listen to her being interviewed, on the No Triumph, No Tragedy programme on Radio 4.
I would recommend reading both the article, and if possible, listen to the interview. I would imagine that people who hear her speak about the “Politics of Disability” might well feel that she is being stubborn to the point of being unreasonable. Others might feel that she is never going to give up hope. A famous horse rider who was paralysed, and financed all kinds of research, set up a Foundation and just wanted to get his spinal cord repaired, was Christopher Reeve– the actor who played Superman.
Personally, I will support either position. It is not for me to “ take sides” but even if at the moment the idea of a spinal cord repairing itself, or having it repaired somehow, is a long way off, then would a wheelchair user really want to not take the chance of some future remedy or therapy that gave them the chance to walk again? Would they really eschew the chance to simply remain a member of the tribe?
I have used my experiences as very young carer for my mother, in this blog from time to time. Regular readers will know she had polio, and was a rather feisty lady about disability issues. So I learned at her knee as it were. I always remember her rather flat and straightforward assessment of her situation, following an upbeat promise by a surgeon, to “bind her leg muscles” and get her walking even better and without a caliper. She said “ I have known no other life from infancy, and to at least be given a chance to walk again was worth a try. The people I feel for are those who suddenly get disabled. It must be terrible”
The operation was a complete failure and actually made her much worse, and such “chances” were seen for what they were – doctors allegedly advancing science in a guinea–pig trial. In the 1950’s anybody in a hospital wearing a white coat, had that mystique of the wartime “boffin” when those same scientists seemingly did the impossible for the war effort.
Fortunately, my mother was a very philosophical person, and focused her energy on disability issues, accepting her lot as it was after the operation.
Although paralysed in one leg and part paralysed in the other, she had readily agreed to the operation. She was after all, a young mother of three boisterous boys, and I leave you to think about how she managed, and how terrified she must have been, when she was not able to just run after a wandering child.
The lingering question for me has been, did she have the operation because of the arrival of her family and the demands family life made on her? If she had never married and had children, would she even have bothered with the offer?