This Tide of Calls for Euthanasia That Needs to be HALTED
I read John Humphrys Comment on Sunday the 14th with a heavy heart. I have spent half my adult life fighting for a normal ordinary existence. Having achieved that I have spent some of the rest of it fighting for the right to hang on to it for as long as everyone does. Articles like Johns reinforce the publics opinion that lives like mine need not be cherished, are not worth as much as everyone elses and can therefore be cut short.
Let me briefly explain. I was born with moderately severe Cerebral Palsy (C.P.), which meant that I couldnt walk until I was ten and the top half of me, was equally as affected. But that didnt stop me living, achieving and enjoying a full and happy life. I got married, gained a degree, brought up two sons, learnt to paint well enough for a local gallery to hold two exhibitions of my work and was a founder member of Jigsaw Theatre Company. Jigsaw is a company of and for disabled people of which I am now honourary Chief Executive.
When you grow up with a disability you learn very quickly that people do not think of you as an equal. They talk down to you, do not expect you to be able to do anything and want to think of you either as a poor suffering specimen of humanity or as a problem that is going to make everyones life difficult. In my teenage years I vowed to throw off the shackles of these stereotypes. My immersion in the arts has given me the means to do that by allowing me to produce pictures and performances of value. Jigsaw has given other people that opportunity as well.
OK, you can say that things have got quite a lot better for disabled people in my lifetime. There is more access, more awareness and a few more opportunities. It cant be a great deal better however because most able bodied cannot imagine what life would be like if they became disabled. They still, in spite of the many disabled peoples achievements that have been given increased media exposure, apparently see disability as a curse that leaves a person with a life not worth living. Why do I say that? Because according to the media it is quite all right for a severely disabled person to want to end his or her life early. It is quite all right for Doctors to be given the legal go ahead to help them.
Is it quite all right for a civilised humane society to want to relieve such suffering through death? Would the Holocaust have been justified had the Nazis produced hard evidence that Judaism consigned its followers to a fate worse than death?
The relief of suffering seems to be the key to this line of thinking so how do we define it? Agony, anguish, torment, misery, distress and torture are similar to it according to my computers thesaurus. Pain is something everyone quite rightly fears yet extreme pain especially in the last throws of life should be rare. We have the knowledge to deal with most types and levels of pain either through pain relief or anaesthesia.
So if it isnt pain causing the suffering of seriously ill or severely disabled people what could cause anguish, misery or distress extreme enough to warrant wanting life to end. Well actually I know the answer to that one from personal experience. While I just had C.P. life was a struggle but I coped with it. Then three years ago I was diagnosed with multiple sclerosis and very quickly could not walk. We coped with the news, after the shock had cleared, we already knew how to cope with disability and had lots of experience wringing what we needed out of the system. However, adjusting to an aggressively progressive condition was different to anything we had dealt with before. Your functionality is stripped layer by layer leaving you feeling totally useless, totally helpless and very vulnerable. A fall that left me on the floor for five hours just confirmed the hopelessness of my situation and suicide seemed to be the only alternative open to me. I didnt want to die but didnt want to live like that. The decision left me in a state of utter misery but if somebody had offered me an easy way to die I would have taken it without hesitation. Luckily no one did and my life has gone on in leaps and bounds
So what made life liveable again? Having enough care to get help with all the every day essentials. This meant that I didnt have to depend on family and friends to do things that they didnt always want to do. Adapting our home so that I could cope easier even after I had deteriorated further. Finding a means of expression that put my stamp on the world so that once again I was contributing and not just taking from the people around me. All of these things meant that there was hope again for the future. I wasnt just looking at a dead end.
So how do we help others in the same situation? The highest level of care should be universally available regardless of their condition and financial means. We must find a way of developing a system to help people find outlets for their time and their talent. They may need somebody to actually do it for them, but if the ideas are their own, it is still their work. At present there are few facilities to help people explore new ways of using their mind and imagination to make their contribution to society. Family members also need a much higher level of support, the same as is given in hospices, to help them cope with the changes and make them feel that they are doing everything they can to help the situation.
Please can we stop talking about helping people to die. There is no greater misery than believing there is nothing left in life for you. Lets take that suffering away from them and help them live again.