THE BLOG

Not in My Name

19/05/2013 00:48 BST | Updated 17/07/2013 10:12 BST

After spending a long gruelling day on a press junket discussing my views the issue of assisted dying and a new survey carried out by Benenden Health that shows that 77% of the people questioned were in favour of a change in the law alongside Heather Pratten, patron of Dignity in Dying, I fell into bed exhausted. While it was a day that had it's trying moments, including having a radio presenter scream at me "it's my choice" and "you wouldn't do this to a dog" when I expressed my belief that the current law around helping someone to die is about right, one of the best things about the day was how well I got on with Heather. We both admitted to each other during a break in proceedings that we were both very worried about meeting each other and of the other's reaction to us. One of the key elements of our being able to discuss such an emotive subject in a rational manner, unlike the aforementioned radio presenter, is that Heather and Dignity in Dying are in favour of a change in the law that would allow people with only six months to live and who were of sound mind to be assisted to die. I can understand why this might an issue that might need exploration, but that is not what the current court cases such as Paul Lamb's, and the media, are actually focusing on.

Mr Lamb's case revolves around his quest to have the law changed to allow doctors to play an active role in assisting him to die, as he feels his impairment does not allow him to do it himself. He claims this is his "human right", but I ask does anyone have a human right to ask someone to kill them, or to play an active role in their death? If we remove the disability element of the question them the answer in the majority of cases would be no. I do not see this as a fight for equality but more an exemption. They seem to claim that disabled people should be a special, tragic case and I cannot underestimate how much this idea scares me. I have spent my entire adult life fighting for equality for the disabled, but this argument tries to make us different and even paints us and our lives as worse than being dead. Don't get me wrong, I fully appreciate that Mr Lamb own experience is coloured by his chronic constant pain. In fact I also experience a high level of pain day in, day out, but I cope by filling my day with work, campaigning and a busy social life which helps take my mind off the ouchiness.

And this is another key issue. Mr Lamb paints his life as a lonely existence where he states he does not even leave his house in winter, which will force him to spend his day with nothing but his pain to focus on. From my own experience this effects your mental health and makes you become really depressed. But we do not see depression as a cause for assisted death, and instead we would intervene with both counselling and medication. Herein lies the root of what I feel should be the target of this fight. Our society should want to ensure that everyone, no matter how impaired they were, has the chance to live a fulfilling and enjoyable life. It should be a fight for equality of life and not of death.

I have so many friends who have similar or greater levels of impairment to Mr Lamb who are living amazing lives that would be the envy of most non-disabled people, but we hardly ever see them in the media. Instead we see portrayals the paint us as either tragic suffers, brave super cripples or scrounging benefit claimants (this is a new one, but is dead popular in some sections of our media). Now just imagine you are newly disabled, after waking up the day after that accident or illness, and you only have those stereotypes to fall back on as you try to imagine your new future. Well it would stand to reason that you would consider suicide. I should know, when I was 15 I not only considered it, but I planned it and was minutes away from carrying it out. It was only the thought of my Mother, who had supported me in every way, including washing, dressing and toileting me like she did when I was a baby, discovering my body that stopped me.

Six months from that day I was back at school, had a great gang of friends and even had discovered that my new wheels didn't put girls off, which was very important to a 15 year old. Ten years on I had just come off tour with my band after supporting my teenage hero Gary Numan, was presenting the Emmy award winning Channel 4 series Beat That and had just become the first disabled actor to appear in a UK soap. If you had tried to tell me what my future held back when I was about to kill myself I would have laughed, and if you could have proved it I would have said keep the legs! Twenty five years after that part of my life I married the most wonderful person in the world, ney universe, my wife Diane. If the option of assisted death had been open to me I might have considered it, and if my family supported me in that choice I might not be here today. So I would have missed out on what has been an amazing life, and there's still so much left to go.

While we are side lined arguing whether a disability, and any surrounding medical issues, might be a reason to die we are not exploring what is at the root of it all. Our fear over how we might die. During our day together Heather and myself agreed that this is an area that we should be discussing. While I am still unsure how the law might proceed to find a solution to ensuring that all of our deaths have some level of dignity, I do acknowledge that so many people are really scared of what lies ahead. But if we maintain our obsession with lumping "the disabled" in with "the dying" then the issue will never be resolved. If we can find a way to discuss the issue of death dispassionately then even people like Paul Lamb may find an answer is found that keeps him happy while not re-enforcing the stereotype that disability is a legitimate reason to want to die.

(This is me at my most balanced on this issue, but it's really is time that we started talking in this manner and not shouting abuse about each other's views)