Sebuah pertanyaan tentang harga hidup...dari BBC
Noel Martin meets Liz Carr
Paralysed after being attacked by neo-Nazis, Noel Martin is planning a trip to Switzerland to commit suicide. Here, disabled broadcaster Liz Carr, who met Noel for a BBC Radio 5 Live report, writes an open letter urging him to think again.
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
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
More Britons seeking suicide help
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.
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.
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
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.
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,
- @ ginung : Hi,hi nung.. iya ni,, kpn2 ikutan ya... ditunggu loh,,
From: ginung wow keren.. cakep lho <ginung_kodokijo@...>
To: piss gen <firstname.lastname@example.org>; PeaceGeneration@yahoogroups.com
Sent: Monday, November 17, 2008 10:27:22 PM
Subject: RE: Bls: [PeaceGeneration] Peace Camp for Peace Generation (21-23 November 2008)hohohoho...ginung dr angkatan PION pengen bgt ikut...tp knp waktunya pas tgl itu...hiks.. .jd gak bisa ikut....deket2 wisuda, jd keluarga masih pada ngumpul, jd gag mgkn ditinggal.hiks, ,,anggit: wis kawin toh kamu..cepetnya buk,,,,sonny:son... hohooohoho. ..kangen, ,,,semua,,,,,,, ,,,wooooooiiiiii iiii..... ......... .......
--- Pada Sen, 17/11/08, anggito chan <i_lalang@hotmail. com> menulis:
Dari: anggito chan <i_lalang@hotmail. com>
Topik: RE: Bls: [PeaceGeneration] Peace Camp for Peace Generation (21-23 November 2008)
Kepada: "piss gen" <peacegeneration@ yahoogroups. com>
Tanggal: Senin, 17 November, 2008, 1:21 AMya ampuuuun...maaf aku baru tau tentang acara ini. maklum kesibukan ibu rumah tangga...hehehehhe
masih boleh ikut nggak?
To: PeaceGeneration@ yahoogroups. com
From: eman_esy@yahoo. com
Date: Fri, 14 Nov 2008 18:47:46 +0800
Subject: Bls: [PeaceGeneration] Peace Camp for Peace Generation (21-23 November 2008)Eman ikutttttttttttttttt tttttttt. ......... ......... ......... ........
Dari: Peace Generation <justforourpeace@ yahoo.com>
Kepada: pisgen <peacegeneration@ yahoogroups. com>
Terkirim: Jumat, 14 November, 2008 10:18:59
Topik: [PeaceGeneration] Peace Camp for Peace Generation (21-23 November 2008)Teman-teman Peace Generation,
kita akan ada acara Peace Camp untuk kita-kita sendiri,,
namanya "Peace Camp for Peace Generation"
Kegiatan ini akan dilaksanakan pada hari Jumat-Minggu (21 - 23 November 2008)
di Wisma Srikandi, Kawasan Kaliurang, Yogyakarta
Inti dari acara ini, kita akan membahas apa yang akan Peace Generation lakukan selama 1 tahun ke depan,
(jadi semacam strategic planning yang dibungkus ala Peace Camp).
So,, dimohon kehadirannya, terutama untuk teman2 PiOS (Feeling Peace in Our School) dan JPAR (Jogja Peace Amazing Race).
Kegiatan ini tidak tertutup untuk para buaya tua yang ingin hadir dan berbagi cerita serta ide ke teman2 lain.
Para alumni SCP (Student Camp for Peace) dan PiON (Peace in Our Neigbourhood) juga dipersilakan datang.
Untuk semua generasi dan anggota Peace Generation yang akan hadir, dimohon konfirmasi terlebih dahulu ke alamat milis pisgen (peacegeneration@ yahoogroups. com) atau ke no hp Peace Generation (085643694144) dengan menyebutkan nama lengkap dan angkatan (bila ada). Konfirmasi sangat diperlukan untuk perkiraan jumlah konsumsi dan reservasi kamar. Dimohon konfirmasi dilakukan sebelum tanggal 19 November 2008.
Technical Meeting untuk PiOS dan JPAR akan diadakan pada hari Rabu, 19 November 2008 jam 15.00 WIB.
Kemungkinan tempat TM : PSKP, Fisipol, atau Kawasan Keraton Jogja. (kepastian tanggal, waktu dan tempat TM menyusul)
Pada hari pelaksanaan, kita akan berangkat bersama-sama dan akan disediakan bus dari Jogja menuju Kaliurang.
Jam dan tempat keberangkatan akan diumumkan saat TM atau melalui milis pisgen.
Materi acara yang (rencananya) akan kita lakukan pada Peace Camp ini antara lain:
- Penyelenggaraan Peace Camp oleh Peace Generation, menceritakan Peace Camp apa saja yang pernah kita lakukan, temanya, dan suka dukanya.
- Brainstorming ide Peace Camp 2009, ada ide apa untuk tahun depan?
- Team Building , semua angkatan di pisgen bakal campur baur di sini,, biar kita tetep kompak..
- Training fasilitasi, mau tau caranya biar bisa jadi fasilitator yang bagus?
- Manajemen konflik dalam team kepanitiaan Peace Camp, ada kalanya kita tidak akur dan berbeda pendapat dalam kepanitiaan, bagaimana mengelolanya?
- Pleno ide Peace Camp 2009, udah dapet banyak ide,, mana yang akan kita pilih? Atau kita akan menggabungkannya?
- Mekanisme kerja peace camp, yup.. step-step apa aja yang perlu dipersiapkan dalam membuat kegiatan?
- Strategic planning for Peace Camp 2009, siap2 buat taon depan….
- Fund Raising, duit, dukungan, etc,, ada ide untuk fund raising?
- Action plan pasca kegiatan Peace Camp, pisgen bukan sekedar piskem, pikirkan pula kegiatan kita setelahnya..
- Peace Generation sebagai sebuah komunitas, pisgen adalah komunitas yang unik,, mari membuat pisgen menjadi gerakan yang lebih besar lagi, :)
Jadi, bawalah ide sebanyak-banyaknya untuk Peace Generation..
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