In this section we feature stories and experiences from some of our leading disabled activists who are campaigning for change. The current law has long been shown to have failed and a new safeguarded law is needed to put in place protection for terminally ill people and give them choice and control.
Greg Judge – DADID Campaigns Officer
I have long supported a change in the law on assisted dying for terminally ill people because I feel it’s so important that people keep in control of themselves, even at the very end of life. When facing an imminent and inevitable death, someone should have the right to choose how to control their passing, to be directing healthcare professionals and having the support of friends and family in an environment which safeguards everyone involved.
Whether it’s been my grandparents dying or speaking with those who have personally struggled with the suffering of a terminal illness, It’s clear that no one can nor should ever make such a life-ending decision except the people themselves. For one of my grandparents, she no doubt struggled with her final months of her battle with cancer and I cannot know what she would have chosen if given the choice of an assisted death.
“I still think she should have been given the choice to control her death, the more options anyone has, even if they don’t want to use them or want to think about it more, it’s all power to them at a moment when they can feel their most powerless.”
As a child, I came close to death at one point whilst having spinal surgery. Luckily I survived but did develop a spinal cord injury that means I now use a wheelchair full time. Experiences such as this have shown to me that pain and suffering are two very different things, one can be managed but the other depends on the person.
Last time I checked, I’m not dying, touchwood but for the minority who are dying from a terminal illness and whose suffering will soon end in death, why can’t they control how it happens, who is around them, whether healthcare professionals are assisting them or not?
Greg works as Campaigns Officer for Dignity in Dying and coordinates DADID’s volunteers and supporters. Having graduated from university, Greg has gone onto lead several campaign successes both in and out of party politics. Greg serves as an elected Trustee of a leading disability charity.
You can follow Greg on Twitter @gregjudge (Note: This is a multi-purpose personal account, not just assisted dying content)
Lucy Aliband – DADID Volunteer and disabled activist
I started campaigning for a change in the law over assisted dying after my Mother died of cancer on 20th May 2012 after a long fight. As a result, I decided that if I was ever dying of a terminal illness, I would want choice and control over the way it happens.
Along with DADID, I believe my mother and those who are dying (with less than six months to live) should have choice and control over their bodies. Bodies which are already in the process of dying.
“It took a lifetime for Mum to die. This is why I am a firm believer in assisted dying. Her pain went on for too long, her suffering that couldn’t be cured.”
Her terminal condition worsened to the point where she lost her autonomy, her independence and her dignity. She was a mental Hercules. She fought from the very start, every day, every minute of every day. Towards the end, the suffering was too much.
“More morphine please!” the family and I cried, “for pity’s sake, more morphine.” They pumped up the dose and she sank back down again. For hours, for days, and it went on and on”
Those dreadful and heart-wrenching last few months of her life were made all the more difficult for me and the whole family as I was still recovering from a life-changing accident.
In 2005, I was working in South Africa and was involved in a major car accident which left me in a coma for several months and in hospital for over two years. I am still getting used to my new life today as a disabled person; walking is more difficult and I can’t sit for very long. But I do make the most of life!
I support the legalisation of assisted dying because it will make sure those who are dying (and only who are dying) are given a choice. Just because I’m now disabled, doesn’t mean I want to die! Everyone who is not dying, disabled or not, will be safeguarded: The law just won’t apply to them.
Lucy volunteers with DADID. Before an accident, Lucy had a career in law, finance and international development. Lucy lives life to the full and will soon tandem paraglide.
Ted Shiress – Disabled Activist
Ted Shiress is an up and coming comedian and the writer and ‘star’ of his own web-based series, Cynic. Having coped with moderate Cerebral Palsy all his life he has adopted a ‘think a lot of life, think little of having a disability’ attitude, though the latter is a focal point of his stage-persona. His loves include music, food and comedy (obviously!), and get him talking about these and it becomes clear that there is no other he’d rather be.
Although Ted’s lust for life comes through always he can understand how people can find themselves in a place where life is no-longer lust-worthy. There will be times when someone finds oneself so terminally ill and close to death that the greatest gift they could receive is to be able to skip their last few days of suffering by having the power to control their death as they choose.
Furthermore Ted rebuts the ‘slippery slope’ argument that allowing assisted dying will lead to an increase in preventable suicides. It won’t, Ted understands that assisted dying is purely a matter of dignity, and that is why he supports AD with all the necessary safeguards that Lord Falconer’s Bill provides and that DADiD campaigns for.
You can follow Ted on Twitter @eccentricman87 (Note: This is a multi-purpose personal account, not just assisted dying content)
Shana Pezaro – Disabled Activist
Shana has lived with Multiple Sclerosis since childhood and confronts the many barriers of her condition on a daily basis. She regularly campaigns for various issues involving disabled people and MS, however, for her, having a disability does not influence her support of assisted dying for terminally ill people.
“Assisted dying would does not allow people living with long term conditions assistance to decide to end their lives. I would not support that. But I do fully support terminally ill, mentally competent dying people having the choice to control their imminent deaths.
The strict eligibility criteria and upfront safeguards means we can safely put dignity into the hands of dying people. I know that I’m part of the overwhelmingly majority of disabled people who support assisted dying. I really wish disability organisations would recognise this. Now is the time to act and let some dying people controls their deaths. It’s the compassionate thing to do.”
Ellis Palmer – DADID Supporter
Ellis uses a wheelchair full-time because he has Cerebral Palsy. He’s currently studying for a degree in European Politics and Spanish at University of Birmingham and serves as Disabled Student’s Officer of his student’s Guild.
“I believe that people should have the right to do as they wish when it comes to the end of their life!”
Luke Hamill – DADID Supporter
Following a traffic accident in 1990, Luke had a spinal cord injury which means he is paralysed and uses a wheelchair.
Luke has since lived his life to its fullest. He went to university and was introduced to a contact at the BBC by his university tutor. His acting career has seen him appear in Eastenders, Doctors, The Bill and a key role in Casualty. Outside of acting, Luke has appeared on The Wright Stuff as a guest and is a regular public speaker and coach.
He is currently writing a book on his experiences of property investment; ‘I’m The Lucky One’.
“I support the individual’s right to choice. If you are dying and you know this will not change, it should be your right to die well. The institutions of state should have no bearing on this.”
Rob Brown – DADID Supporter
Rob has a spinal cord injury and is a full-time wheelchair user. His injury came after a long career in nursing in which he took up the post of Director of Nursing in an NHS Trust.
“Living life to the full can also mean being allowed to chose when you no longer want to suffer through terminal illness. I live life to the full, but when suffering overcomes me I want to be able to chose to control my death if necessary.”
Sally O’Connor – DADID Supporter
I was diagnosed with multiple sclerosis when I was 32yrs. I gradually deteriorated until now at 72 I use a wheelchair all the time. I haven’t worked since I was diagnosed but have been active in the voluntary sector, mainly with disability groups.
It just makes absolute sense to me that a dying person should be able to take charge of the time and place of their death. We have spent out lives ‘being in charge’ so to speak and our death should be no different.
I can understand some disabled people are worried about the effect this law could have as they have fought so hard to be accepted and get equality in so many areas of their lives; anything that hints of ‘death’ can create a sense of fear. For me supporting assisted dying is also about equality with abled-bodied people so everyone, disabled or not, can have a good death if you are terminally ill and have less than 6 months to live.
Baroness Brinton of Kenardington
Baroness Brinton was introduced to the House of Lords in 2011. She was appointed Co-Chair (and Liberal Democrat spokesperson in the Lords) for Health in November 2013. She has had careers in television, higher education and throughout much of her life, a love of politics and representing various constituents.
She now has rheumatoid arthritis which means she uses a wheelchair much of the time now. As a disabled woman and a Christian believer, Baroness Brinton has announced her support for Lord Falconer’s Assisted Dying Bill and registered her support of Disabled Activists for Dignity in Dying.
In a recent Telegraph article, she states that
“If someone has been told that they have six months or so to live and know the way that they are going to end but they are unable to end as they would want to, God is a God of compassion, I can’t understand how anyone could say that they should suffer.”
Melanie Reid – Journalist
I believe that there is no point keeping humans alive just for the sake of it in circumstances which we and they regard as intolerable. And if they need help to achieve a good death, in the comfort and peace of their own home, we should be able to give it to them.
Ironic, isn’t it, that we can buy 50 different types of pasta or ice cream? We can choose a million styles of hair, or clothes, holiday destination or car. Tidal waves of consumer choice lap against us every waking minute. Yet when we need help to effect a simple, primary decision to ease out of life; we are denied that choice. Or, if we are able, we must leave the country and go to a grotty Swiss suburb to find it.
Melanie Reid is an award-winning Times journalist whose weekly column for The Times, ‘Spinal Column’, is about disability and her life as a disabled person. She broke her neck and back in April 2010 whilst horse riding, and is now tetraplegic.
Lord Low of Dalston, CBE
Lord Low was appointed a Commander of the Order of the British Empire (CBE) in the 2000 New Year Honours for services to the RNIB and disabled peoples’ rights. In 2006, he was created a life peer as Baron Low of Dalston, and he sits as a crossbencher. Lord Low is vice president of the RNIB and president of the International Council for Education of People with Visual Impairment.
Dr Tom Shakespeare
Tom is a renowned academic in the field of sociology, disability rights and bio-ethics. He has lectured in sociology at the University of Sunderland and his PhD degree at Cambridge. He previously co-authored The Sexual Politics of Disability and went onto spend five years working at the World Health Organization in Geneva. He continues to consult for WHO, World Bank and other UN agencies.
His own experiences of disability have been invaluable for academic research. Tom was born with the genetic condition achondroplasia which is why he is 4 foot 5 inches tall.
Tom has been a long supporter of a change in the law on assisted dying. He says:
“The objective of assisted dying legislation is to give people control over a death which is going to happen soon anyway. The vast majority of people who opt for it – and there will not be many of them, if Oregon is anything to go by – will be people with end stage cancer or motor neurone disease or lung disease. I would oppose voluntary euthanasia for people who are not dying, and so would the majority.”
The accounts made in the About US section of the Disabled Activists for Dignity in Dying website reflect the views of the authors.