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My Personal Thoughts On Terry Pratchett’s Documentary And Assisted Death

June 14, 2011

I’ve lived with a physical disability since birth. I hate to be told that I ‘suffer’ from my condition- because I don’t suffer. I don’t know any different. For me, life with a disability is ‘normal.’ I’d like to think I’ve made the best of the life I’ve had so far, and that I will continue to make the best of my life for as long as it lasts.

Last night, I watched Sir Terry Pratchett’s documentary, Choosing To Die, with interest, and some sadness. I was moved to tears by the scenes of Peter Smedley’s death. However, the idea of a person’s final moments being filmed and shown to members of the public is not the only thing that worries me about the programme, or the issue of assisted suicide.

As someone born with a disability who knows no different, I have never understood the idea of assisted dying. I have always believed that every life is equally valuable. I realise that disabled people need support- often a lot of it- to live- but personally- and I know there are many who will not agree- I believe that we should be given as much support as possible to live the best lives we can before we are told about the right to die.

I also realise that people who become severely physically disabled or terminally ill later in life, after they have known ‘normality,’ would not be likely to share my views on this issue. I can’t say I understand the feelings of someone who finds themselves in that situation, or that I can imagine how someone feels when they find themselves in that situation.

Personally, I think that the idea of assisted death comes from the way our society sees and treats sick and disabled people. People who become disabled or seriously ill have often spent most of their lives around others who see disability and serious illness as something negative. When they become disabled or seriously ill, they fear that they are going to suffer an unbearable amount of pain. Some even start believing that their lives are no longer valuable. However, this doesn’t have to be true. Personally, I think my disability has made me who I am. I have had so many positive experiences in my life as a direct result of having my disability- experiences I would never have had if I wasn’t disabled. I am glad to be alive, and would never choose to die before I have to.

Terminal illnesses, and most disabilities, shorten lives too much anyway. So rather than being encouraged to end our lives before they have to end by being taught that we have a ‘right to die,’ I wish that all disabled and terminally ill people could be taught how valuable their lives are. I wish people could stop automatically associating disability and serious illness with pain and suffering, and start learning and thinking instead about the positive things that sick and disabled people are able to do, with support, and in spite of the challenges they face.

I’m sure you’ve heard the story of Alice Pyne, the 15 year old who is using her own diagnosis of terminal cancer to think about all the positive things that she wants to do with the time she has left. She is handling her situation with more strength and maturity than most adults would show faced with something similar. Her story is proof that disability or terminal illness do not have to stop a person living life to the full.

7 Comments leave one →
  1. June 14, 2011 11:17 am

    Great post. Right on.

  2. *Stargazer permalink
    June 15, 2011 12:39 am

    I wish all disabled people could be taught how valuable their lives are too.
    You’re right – sick and disabled people with the right support can go on to great things.

    But what we’re learning these days is, unless you have money, advantage and attentive doctors,
    we most of us are not destined for the great things to which we aspire – ours is the realm of struggling to be heard over the din of “we need to cut funds, services, support and activity groups and supply of equipment”.

    I too am glad to be alive, and would never choose to die before I have to.
    But I’d like to have the right to choose, should my pain and immobility become too much to bear.
    As a healthy tree-climbing, bicycle and roller-skate loving teenager I’d tell my Mum if I was brain dead or PVS from an accident I’d want her to switch me off.
    In my twenties, as I got into sport and dancing, I told her if I couldn’t use my legs I’d want to die.
    Presently in my mid 30’s, Degenerative Spine Disease, Hypermobility, ME and Fibromyalgia.
    I now feel very strongly in the “right to choose” camp.
    I’m physically and emotionally unlikely to migrate to anywhere else now.

    If the establishment could make it so I can live happily on the ground floor somewhere in peace with no festering rubbish, noise pollution, anti-social youths on motorbikes at 2am, the police chopper overhead.
    If I could get access to the therapy, support and equipment I need to go back to school and retrain for my hoped-for tax-paying future, I may find myself changing my mind.
    In the meantime………………………………………………………..


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