The Email Responses a Week On…

From my previous post, I raised how I have been struggling to get a response from figureheads in our society. I know it was a long shot trying to get in touch with the likes of Terry Pratchett; however, you have to start somewhere. Here are the two only responses I have received.

I have also emailed Michael Wenham, a Motor Neurone Disease patient who has the strong belief that we should not have the right to commit assisted death. He has written a book called ‘My Donkey Body’ about his struggle and his views. I tried emailing him because he has an online accessible blog and he may have been interested: no reply.

Liz Carr is also a representative of the against argument for having the right to die. She has been involved with the BBC and also has interviewed people such as Noel Martin who wished to commit assisted suicide after he was paralysed from a Nazi attack in 1996. Her views are extremely pungent:

Dear Noel,

Having met you last week, I felt the need to write and continue our discussion about your decision to end your life soon. I don’t write this as someone with strong religious or pro-life views but as another disabled person, who like you uses a wheelchair, who became disabled and who needs round-the-clock assistance in their life.

Noel, is your life really not worth living?

In interviews, you repeatedly say that because of your accident, you can’t feel, you can’t touch the world and can only watch as it passes by. I disagree. Throughout the interview, when we talked for example about your beloved wife who you lost to cancer, you filled up, overcome with emotion.

MORE ABOUT NOEL MARTIN
Noel Martin
Former builder – aged 49 – lives in Birmingham, UK
Paralysed from neck down after attack by neo-Nazis in Germany in 1996
Racing enthusiast and race horse owner
Wife, Jacqui, died of cancer in 2000

In a different way, when we discussed your ongoing fights for support and assistance with your care providers, you talked with passion and anger.

You proudly showed me the racing magazine where you were “owner of the month” after your horse won at Ascot. You asked one of your staff to read out the poetry you have written since your accident. You are definitely a man who can feel.

As for not being able to touch the world around you – from an onlooker’s point of view this again just isn’t true. You appear to touch the world in so many ways.

You have staff who clearly respect you and enjoy working for you. You have family, a grandson and friends. Through the neo-Nazi attack that led to your accident, you have become a celebrity, a campaigner against racism, a fighter for justice. You have organised exchanges for young people from Berlin to come to Birmingham to show them that integration is possible.

You have written your autobiography. In fact Noel, it seems to me that since becoming disabled you have actually touched more people and embraced life in ways that perhaps you wouldn’t have if you hadn’t had your accident. You are very much alive.

I know that at the moment, your situation is frustrating. Pressure sores – the result, you say, of cutbacks in the health service – mean you’ve hardly been out of your bed, never mind your house, for many months now.

Wheelchair-friendly beaches

You said that as a disabled person you’ll never walk on the beach, be able to stand up and cheer when your football team scores, or kiss the head of your prize-winning racehorse.

Liz Carr
 I think it’s too easy for society to promote assisted suicide as a right rather than work to overcome the barriers to supporting older, ill and disabled people to live fulfilled and valuable lives 
Liz Carr

I can really relate to the idea that there are now things you can’t do. I used to imagine walking hand-in-hand along a sunset beach with my lover. But the reality of not having four-wheel drive on my electric wheelchair and sinking, immobile into the sand, kept me on terra firma.

But if you’re interested, I can let you know where there are beaches with sand so compacted that you can wheel on them with ease; others with boardwalks to the sea and there are now even beach wheelchairs.

Like you, I became disabled. But for me it was at the age of seven, following a childhood illness.

I know adapting to your new life and situation can be difficult. I remember as a teenager being too unwell to go out with my friends, thinking I’d always have to live with my parents and that I’d have no choice but to rely on my mum to look after me. Life wasn’t much fun and at times I didn’t see any point in the future.

Today, I have the assistance I need that allows me to live in my own home, to have friends, a partner and a career as a comedian. In other words, I have a life I could never have imagined back then.

How? I was lucky enough to get support, advice and information from other disabled people who’ve been in my situation, who showed me that there was another way and who taught me how to get what I need to live my life.

I know you’ve received only some of what you need in terms of access and assistance, and this has been hard won. Don’t you think it’s maddening that so many disabled people remain isolated, uninformed and unsupported in negotiating the confusing world of welfare, health care, social services, legislation, assessments and adaptations.

Scared of illness

Maybe that’s why assisted suicide seems to be increasingly seen as an option by disabled people, not just those who are terminally ill.

Daniel James

Paralysed in a rugby accident, Daniel James, 23, died in September at Dignitas

Worn down, feeling like a burden and with their needs unmet, it’s perhaps understandable why people like yourself might choose death. But surely before we even consider assisting people to die, we need to assist them to live.

One of the main problems I have with assisted suicide stories like yours, Noel, is that the media perpetuates the idea that to be disabled or ill must be the greatest tragedy of all. Disability inevitability equals no quality of life.

I know when people read your story, many will agree that yes, if they were in your situation then they would want to die too. Most people are so scared of illness, of disability, of getting older, that wanting assisted suicide is seen as an entirely rational desire. What scares me is that views like these will also be held by the doctors, the media, the courts, the government and all the others who have the power to decide if we live or die.

I’m sure by now you know how I feel about assisted suicide. Until the day when good quality health and social care are universally available regardless of age, impairment, race, gender or location, I believe there is no place for legalised assisted suicide.

I just think it’s too easy for a society to promote assisted suicide as a right rather than work to overcome the barriers to supporting older, ill and disabled people to live fulfilled and valuable lives. Forget the right to die, isn’t it more urgent that we campaign for the right not to be killed?

We may have differing perspectives on this debate but I think what we share is our respect for each other. Thank you for sharing your story with me and for letting me into your life. I hope your one-way ticket to Switzerland is an open one so we can continue this discussion over the coming years.

Until next time,

Liz

I decided to email Jo Cartwright from Dignity in Dying UK, but I have surprisingly not had a response either.

 

 

I spoke to my peers earlier in the week and if my responses were not so successful then I can reenact stories in a sense. For example I do not need the people in the photograph to actually be the author of the story. Although this is not what I would ideally want.

 

 

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