THE BLOG

The Fable of the Dream of Being Fixed

14/04/2014 12:44 BST | Updated 13/06/2014 10:59 BST

Recently the media has been awash with stories of miracle cures of disabled people, from the video of Johanne Milne crying as her cochlear implant was switched on for the first time to the news that experimental research with electronic stimulation has allowed a group of spinally injured men to regain function below their injury. I expect many non-disabled readers would imagine that the disabled community is over joyed at these advancements in medical knowledge, but for many disabled people this media coverage is more proof that society still doesn't understand what it means to be disabled.

I began my life as a wheelchair user in 1981, after I injured my spine. In 2003 I had another major spinal surgery after I broke my back for a second time. Afterwards it became clear that an unforeseen side effect of the operation had caused me to recover a great deal of function. I could now feel both legs all the way to my toes and could move my legs to below my knees. My surgical team began to wonder if it might be possible to get me walking again, although it would have entailed at least three more major surgeries, many years of physiotherapy and I may only been able to walk with the aid of crutches. While I felt that I should have been pushing to take advantage of the this "miracle" I knew that my life as a wheelchair user was an amazing and happy one. I just could not see how under going more surgery and then having to dedicate so much of my future in physiotherapy just for the possibility of standing up and walking badly was worth it. In the end I told my medical team that I was not going to proceed with any treatment. Instead I would stay in my wheelchair and I have never regretted it for a moment since.

(I should also point out that around 2010, I started loosing some of that function as my nerves became trapped in scar tissue again so I really did make the right choice!)

Being a media type I thought my story would make a great documentary, as did the BBC, so I was quickly being shadowed by a camera crew as I made my decision. However it soon became clear that rather than make a programme that highlighted how many disabled people did not want to be cured, the show would instead make me out to be an aberration. The producers found other contributors who were desperate to walk again, including one person who could already walk about to the level I was expected to manage after the proposed treatment. Even the programme title, Can Walk; Won't Walk painted me as being disabled by choice, another stereotype that the media loves. When the show aired the media jumped on my story because they just couldn't believe it and I popped up on radio, TV and in the press. I had hoped it might change the thinking of the media on the subject of curing disability, but sadly not.

Disabled people know that some will want to be cured, especially those who become disabled later in life. It is part of the grieving process, but many get stuck at that point in their recovery as they are told by doctors and the media that one day a cure will be found. No one ever tells the whole truth. Sure one day a cure might be found, but it will probably work best for people who are newly disabled. I had been in my chair for over 20 years when the operation returned my function. In that time I had lost considerable bone density, making my legs no longer strong enough to take my weight, my tendons and ligaments had tightened so that I could not straighten my legs fully and my internal organs had changed position to function better in a sitting position. My body had adapted to life as a wheelchair user. That's why I needed so many extra surgeries and so much physiotherapy. If I had regained my function just after my original injury it might not have been such a major physical undertaking. I would also not have built a successful life on wheels.

When I decided to write this column I asked my followers on Twitter what they thought and I received no replies saying they dreamed of being cured. Wheelchair user, sculptor and CEO of Shape Arts Tony Heaton (@marblesculptor) asked "what are you trying to cure? Nowt wrong with me mate" and Katie Fraser (@ablegirl) admitted that she had loads of pain but accepted it as "that's what comes from my impairment". Berkshire DPAC (@BerkshireDPAC) worries that "fantasising about cure is [a] way of wishing us gone". This fear is held by many disabled people. If we aren't cured or curable then we are a failure and our lives as disabled people must be so awful that it might be compassionate to put us out of our misery. Hence the growing public desire for assisted suicide for disabled people. How can society understand we disabled people can have amazing, happy, fulfilling lives if all they see is coverage of the joy of being cured? I know from my own life, and the lives of so many of my disabled friends, that being disabled is no barrier to a rich life and I just wish the media showed that too.

This isn't call to end research or to the coverage of any advancements medicine makes, just a more balanced view of what being disabled means. We aren't all waiting to be fixed. Most of us are busy living our lives just like anyone else.