by Dr Jane Campbell MBE
STIL Seminar, 26th May 2003
Independent living asserts that every life is worth living; science seeking to eliminate disability is against this principle; science should make disabled life worth living, not prevent or end it.
Very recently, two disabled adults from the UK travelled to Switzerland, to a suicide clinic. Their conditions were not terminal, yet they were so depressed about their future lives that they sought medicalised suicide. Although not old, they had been living in sheltered accommodation designed for old people. Why did they have such a gloomy idea about the future? Why did no one speak to them about independent living options? And worst of all, why did doctors help them to kill themselves? The normal response to suicidal depression is to treat the depression, not to push the person off the bridge!
This example, and others like it, show how urgent it is to change medical approaches to disability, and to introduce independent living values into scientific work on disability.
In 1999, a global summit on independent living in Washington DC concluded with a declaration. It sets out the principles of independent living. The first principle is:
“that all human life has value and that every human being should have meaningful options to make choices about issues that affect our lives”
If we accept that all human life has value, it follows that we should strive to make each life valued. Sadly, in current society, some lives are deemed more valuable than others.
My presentation is not centred on a moral or ethical position on the right to live or die. What I wish to discuss here is the impossibility of a regulatory framework, which would ensure that disabled peoples’ lives are not put at risk. I will argue that, currently, our lives are seen as inferior to those of non-disabled people. Therefore, legalising euthanasia or even assisted suicide would place disabled people in potential danger.
When I was born my mother was told to take me home and enjoy me, as I would die within a year. As so often with severe impairments the doctors were wrong. I was frequently unwell, mostly with chest infections that were life threatening. The doctors always treated me appropriately with antibiotics and ventilation. . So, here I am today.
Unfortunately, four decades later, so-called progress and the pursuit of perfection, has meant that treatment is being denied to people with a variety of impairments, including my own as I will exemplify later with the Baby C law case.
In the UK, the Disability Rights Commission, Disability Awareness in Action and other related organisations have been gathering increasing evidence, from disabled people and their families. This demonstrates that decisions regarding life-saving treatment, are often made in an environment of ignorance and discriminatory attitudes towards disabled people. In addition, society’s obsession with the body beautiful, reinforces the negative stereotype that disability is equal to a state worse than death.
Despite a growing international awareness of disability as a human rights issue the notion of elimination of our specific diversity is supported.
In the words of Prof. Mike Oliver:
“We know the Nazis killed 200,000 disabled people in Germany but we still practise death making in the here and now and still hidden from view. We avert our eyes just like the Germans did all those years ago. There are no gas chambers but there are things going on that we talk about in hushed tones using terms like ‘euthanasia’, ‘mercy killing’ and ‘termination’”. (1)
It is a sad fact that the majority of the public, think disabled lives are flawed or simply not worth living. In a recent UK newspaper poll 32% said they would want to abort if they found they were carrying a disabled child.
The dangers of this general social response to disability not only threaten our chances of survival (which I will turn to soon) but also mark us, sometimes fatally.
Micheline Mason, writes
I was a few days old when the seriousness of my disability was discovered. Strange as it may seem I can remember the change in the attitude of the people around me, from calm and loving to panicky and hostile. A message clearly and firmly slipped into my unconscious saying that people would prefer it if I died. It seems that since then I have spent nearly all my life desperately trying to prove that I should be alive, that I was not suffering (even when I was) that I was not worthless, but indeed exceptionally worthwhile.
Michelline had the wherewithal to resist her social fate, but there are many disabled individuals who are in danger of feeding into the negativity that sometimes ends in suicide.
Think what may happen if this became an easier option with the legalisation of supported suicide? Dr Ian Basnett illustrates this well in his Observer response to a woman (called miss B) who won her legal battle to have her life saving ventilation withdrawn;
“I became quadriplegic following a sporting accident 17 years ago. I was ventilator dependent for a while and at times said to people, “I wish I was dead!” I am now extraordinarily glad no one acted on that and assisted suicide was not legal. I think the first difficulty I faced was the fact that, like many people, I had a terribly negative image of disability. When you suddenly become severely disabled you still have that viewpoint. Before I was disabled, I was working as a junior doctor. That brought me into contact with disabled people and I remember clerking in a man with quadriplegia. My reaction was, how could anyone live like that? I said to my then girlfriend, “I’d rather be dead, if I couldn’t play sport”.
Miss B said similar things in her statement, e.g. having worked as a social worker she did not want to live her life as she had seen many of her clients living theirs.
We should remember 2 things here: Firstly, many of her clients would have probably been in difficult social circumstances, environments, etc. It is very difficult to acquire the kind of support which renders disability minimal with our under resourced social care system. If you stripped away my care support and accessible environment, for which I have had to fight tooth and nail, I, too, would feel suicidal. Secondly, she would undoubtedly held the same attitude as her non-disabled peers, for like Ian, it was the early raw days of a newly acquired disablity.
Certain pressures may follow the legalising of assisted suicide. Every older person who fears being a burden on their children, every disabled person with an inadequate care package, will have a shadow on them from the knowledge that the law agrees that they might be better off dead. Every person with severe cognitive and communication impairments will be at even greater risk of others deciding that death is preferable to life for them. Whether this is achieved by active euthanasia or simply by choosing not to offer or continue treatment in such cases, the result is the same, a denial of life.
We also have to contend with the relentless medical dictate of how certain conditions will affect our lives and that of other people. When the Voluntary Euthanasia Society talks about people with MS “being incurably ill”, and that those who wish to assist them to die is a “supreme act of compassion”, we understand the strength of such a negative medical model. We may feel that it is a compassionate act to help someone end a life that is intolerable to them. The danger is the assumption that disability, in this case the physical condition brought about by Multiple Sclerosis, is sufficient to explain the intolerable nature of life. Disabled people must demand organisations such as the VES, the courts and the public, to fundamentally question why a disabled person may find their life not worth living. To assume that the condition itself is the answer is to ignore the social, economic and personal context of disability.
My greatest sadness is when a disabled person, sees no option other than euthanasia as a release from their situation. Whilst I would defend a person’s choice to end their life, I could never accept the dangers that would attend assisted suicide, and if that means that a very small number of people are not able to end their own life, for the safety of thousands, this has to remain the case. Diane Pretty was a British disabled person who went to the European Court to fight for a legal Right to be assisted by her husband to die. What alarmed me and simply confirmed my fears regarding assisted suicide was the public and press response to her situation. Every Newspaper supported the 'mercy killing' of those who suffer from terminal impairments.
It seems to us that she gave the press a real gift, tragedy on a plate and she was rewarded for this by maximum coverage, none of which ever questioned, even fleetingly, her suicidal tendency. One sure thing, the general public could be forgiven for getting the idea that anyone with a substantial level of disability will inevitably be deeply depressed and pre-occupied with thoughts of dying.
Society seems content to consign Mrs Pretty to the graveyard, yet no one would dare think the same of Stephen Hawking! If the Mrs Prettys of this world are so different that they would be better off dead then the same should be said of Stephen Hawking. Or do we want Hawking to live because of his intelligence? Where do we draw the line?
I believe that acceptance and celebration of our diversity at this level, is absolutely necessary for our emancipation and feeling of self worth and safety.
Rachel Hurst, in her plea to the Bioethics community at their 5th World Congress said,
“It takes a particular sort of courage to rise above these negative impacts and have a faith in your own worth, or the worth of your disabled family member. It takes courage and a clear understanding that disability arises from the social barriers of attitude and environment to your impairment, not the impairment itself. A similar sort of courage and understanding has been needed by women as they overcame the discriminatory images of subservience and earth mother or the courage and understanding that has been needed for black people to overcome slavery and apartheid. Just as we all recognise that society need the difference of women and people of different races and backgrounds, so society needs people with impairments”. (2)
It is almost impossible to convince society that our presence is a vital ingredient for a balanced, healthy world. By involving more of us in the debate on, and definition of, ‘the quality of life’, this may change.
I want to give you a painfully graphic example, which will demonstrate why I have particular concerns as to the ability of society to make rational judgements about the value of our lives. In 1999 an eighteen month old child, (‘Baby C’), with Spinal Muscular Atrophy (SMA) was denied ventilation to help her through her chest infection. It was deemed her “disability was too terrible to live a quality life”. In addition she would need “total bodily care for the rest of her life” and this would be a “burden on state resources and family support”. (3) The family did not accept this decision and took the hospital to court. The judge ruled for the hospital having received advice from a range of doctors, who all categorically stated that no one with this diagnosis could live beyond the age of 2 and that if they did, life would be a living hell. Adults with SMA, including me, could tell a very different story. The baby died as a result of being denied the health care offered routinely to non-disabled babies with severe chest problems.
Why do we put a value judgement on difference? If the Baby Cs of this world are so different that they are better off dead then surely I should be too.
If we accept that all life is of equal value and If we accept that honestly, then we must put all our energy Into making sure our environment and social systems support disabled people’s inclusion and life. Not our death. The campaign to assist our so-called voluntary death is dangerous, reinforces our unequal status and makes people like me feel unsafe.
When writing this paper for STIL I was doing some research on the Internet and found this very encouraging list of values we should think about when contemplating the value of disab;ed people's lives. The list was compiled by the campaign 'Not Dead Yet' in America. It is an anti Euthanasia campaign of disabled people. Let us soak up these values before we debate:
THE VALUE OF LIFE WITH A DISABILITY
Most of society sees people with disabilities as persons who are flawed, pitiful and without dignity. But we see ourselves as a vital and proud community, with values of our own that enhance our quality of life, values that could enhance life for all:
I will feel safe when society says how much it benefits from creating inclusive communities, which embrace the diversity of disabled people. In my future you will never read, “One in three would abort a disabled baby.”