ASSISTED DYING: A MATTER OF LIFE OR DEATH FOR DISABLED PEOPLE?
by Baroness Campbell, of Surbiton DBE
The momentum for assisted dying comes from fear. Fear of pain, fear of disability and fear of being a burden to others. These fears are fed by our society, which, despite – and perhaps actually because of - advances in modern medicine, still dreads illness and impairment - including ageing. Many people believe they would rather die than live with impairment. Who here has not heard phrases like “I couldn’t live like that”? Its often said in ignorance of impairments that many of us actively live, work and play with. Dr Ian Basnett has admitted that: Before I was disabled, I was working as a junior doctor. This brought me into contact with disabled people and I remember admitting a man with quadriplegia. My reaction was, ‘how could anyone live like that? Of course, now I do and think the opposite.
We still live in a disabling world that presents many barriers to our equality. Society finds severely impaired people so challenging that it either pities us, or worse wants to tidy us away. Little wonder then that some disabled people in this position feel their lives are without hope and not worth continuing. Little wonder that many in positions of power and influence, subject to the same prejudices as the rest of society, see facilitating death as the ultimate act of pity. Little wonder that non-disabled people, fearful of impairment and ageing, see euthanasia as a possible escape. In such circumstances it's easy to see euthanasia as an act of kindness, releasing a person from a cruel and uncaring world. After all, “better dead than disabled”? No.
We need to deal with these deeply held prejudices about the quality of life of people such as others and myself with a so-called terminal illness. Surely, before we consider assisting people to die we should assist them to live?
It is my view, that we have no right to even consider euthanasia before good quality palliative and social care becomes available across the whole country to those who are in need.
Little wonder some might choose death in the absence of such support. If my electric wheelchair, my adapted home, my accessible van and my personal care assistants were taken away from me tomorrow, I might well conclude that my life was intolerable. But with them I am able to enjoy a good quality and rewarding life.
Physical and mental diversity are part of the human condition and most of us will have to face up to terminal illness before we die. The important message we need to appreciate is that it is not just the symptoms of terminal illness or severe impairment that precipitates in people the wish to die. It is the social image and personal perceptions of terminal illness rather than the symptoms that are largely responsible for producing a culture that calls for the right to die.
Time and again people tell me euthanasia is not about disability. They tell me that euthanasia is only for people who are terminally ill, nearing the end of their lives. Examples they give include people with multiple sclerosis, motor neurone disease and spinal muscular atrophy, my own impairment. We are disabled people. Negative value judgements are made about the quality of our lives irrespective of whether we are labelled terminally ill or disabled.
Lord Joffe’s Assisted Dying Bill, defines terminal illness as one which “is inevitably progressive, the effects of which cannot be reversed by treatment…and which will be likely to result in the patient’s death within a few months at most.” The attending physician must also have concluded that the patient “is suffering unbearably as a result of that terminal illness.” [Select Cttee Report, vol.1, p.16]. What does this mean? No one knows because even Lord Joffe, the author of the proposed Bill, is very clear that the definition of “unbearable suffering” is intended to be subjective. [Select Cttee Report, vol.2, p.16]
The Bill claims to address the needs of patients in the last stages of their lives but I am concerned about the underlying message - that death is the preferable solution for people severely incapacitated or in pain. Much the same message is being communicated to older people who fear being a burden, eating into the family’s financial or human resources, and to terminally ill and disabled people with inadequate medical and social support.
I will only feel safe when society treats disabled people as equals and views difference as positive. Until then the on-going attempts to legalise euthanasia devalue and degrade us.
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