This weekend the Mail On Sunday ran an article on my choice to not undergo a series of operations and years of physiotherapy after my last spine operation returned the feeling and function to my legs. Since it was published I have done a couple of interviews on radio about the subject and thought you all might like to read the MOS article and listen to the interviews. Here are the links –
I would just like to correct a few mistakes in the article, that have been carried through to the interviews. Firstly I was born in 1965 (never lie about my age, just never see the point), secondly I went into my chair at the age of 15, and thirdly I have already undergone the surgery that gave me my legs back. The operations that I was offered to see if I could walk again are to repair damage that years of being a wheelchair user has caused. I would need a right hip replacement, then a new knee and ankle. The hip surgery would mean two months with a stretching device fitted to an open wound on my hip, as I would need to move the muscles, ligaments and nerves in my hip to allow the new hip to fit correctly. So after three huge surgical procedures, and all the recovery time they would bring (not to mention that each one might go wrong and cause me to loose my leg) I would have to go through between 5 and 10 years of physiotherapy. OK, some people might still think it was worth it, but even then no one could swear I would be able to walk. Oh, and I would need the replacement joints replacing every five to ten years too. I think most people will agree, not that much of a difficult choice.
The reason why I wanted to publicize it was the fact that so many able bodied people just could not understand why I wasn’t going to go for it. I also wanted to voice the fact that disabled people can have fantastic lives, and that we do not all dream of being cured. I have been amazed by some of the responses I have received since all this went out, including the number of people insisting that I better not be getting any benefits if I am choosing to stay disabled. Of course by not going through all this surgery I am actually saving the NHS millions. The hip was going to cost £150,000 – £200,000 alone, and that’s without the cost of the medical staff, hospital stays and other costs. Scary to think that some people see the point of this story to be the cost to the “tax payer”. I think it has wider implications than that myself, but hey who am I to argue?
I don’t think the press has finished with yet. I have been contacted by a few other publications and media shows for interviews, so hopefully this will lead to me getting across the truth behind disability. The main reason why it effects our lives is not because we have something “wrong with us” but because that world isn’t set up to allow us to have the same chances as the “able bodied”. Even with those barriers, we live lives that are the envy of most AB’s and many like myself see their disability as something that set them free.
So watch this space.