DEVASTATING is not too strong a word to describe the experience I had in January last year when I was admitted to hospital for emergency treatment. I was suffering from severe pneumonia, but I also have spinal muscular atrophy, a muscle-wasting condition which means I cannot lift my head from the pillow unaided and need to use a powered wheelchair.

The consultant who was treating me commented that I was very ill and that if I went into respiratory failure he assumed that I would not want to be resuscitated on a ventilator. When I said that of course I would want to be ventilated, he looked puzzled but appeared to let the matter drop.

The next day a more senior consultant repeated the same message; that if I went into respiratory failure — and this was looking likely — then he assumed that I wouldn’t want to be put on a ventilator. Again I protested, and by then I was getting very scared. My husband rushed home, grabbed a photograph of me in my doctoral graduation robes, and returned to the hospital shouting to the doctors: “This is my wife, not the person you think she is. She has everything to live for. You do everything for her just as you would for anybody in this situation.”

It took this confrontation to bring about a change of attitude in the way I was treated. However, I kept myself awake for the next 48 hours, fearful that if I went to sleep I would never wake up. This incident, and similar ones that come to the attention of the Disability Rights Commission, reflect society’s view that people such as myself live flawed and unsustainable lives and that death is preferable to living with a severe impairment.

A High Court judge this week lifted a temporary injunction banning a “suicide” trip to Switzerland by a chronically sick woman and her husband. Mrs Z is suffering from the same condition as Leslie Burke, a man who went to the same court in the summer to insist that doctors continue to support him even when he can no longer feed himself. Many will symphathise with the wishes of Mrs Z, but her choice overshadows Mr Burke’s fears that doctors will prematurely end his life. Little attention is given to those of us who feel incredibly threatened by the move towards a right to die when what we want is the right to live.

Over the past few years, the campaign for euthanasia has gained momentum, as can be seen in the Assisted Dying for the Terminally Ill Bill which is being debated in the House of Lords. The momentum comes from people who do not want to die in pain or become a burden. It is also driven by a culture which, despite advances in modern medicine, still dreads any impairment that may reduce physical or mental capacity — including ageing. Those of us who look physically different challenge society ’s obsession with the body beautiful and looking and staying healthy.

When I was born, my mother was advised to take me home and enjoy me as I would die within a year. As can happen with the prognosis of terminal conditions the doctors got it wrong. Although I was often unwell, mostly with life-threatening chest infections, I thrived in a positive medical environment. Happily, some 40 years later, I remain very much alive.

So before we consider regulating the process of dying we need to deal with deeply held prejudices about the quality of life of people such as myself and those with a so-called terminal illness. When I was admitted to hospital with pneumonia I was viewed as someone near death, but I survived to carry on chairing the Social Care Institute for Excellence. “Terminal illness” is not easy to define. More than a quarter of doctors who authorise assisted deaths in Oregon said that they were not confident they could give an accurate six-month prognosis.

While the Bill aims to address the needs of patients in the last stage of their lives, 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.

Assisted dying should be given as a choice only if good quality palliative and social care becomes available across the whole country. At present this kind of support is patchy at best. Less than half the people who wish to die at home are able to do so and in a recent survey, two thirds of doctors believed that there would be less pressure for euthanasia if there were more resources for the hospice movement. 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 high-quality life.

The British Medical Association (BMA) has stated that the benefits of legalising assisted dying for an individual — such as respecting that person’s wishes — carry too high a potential cost for society at large. The BMA fears that assisted dying could undermine the trust that vulnerable, elderly, disabled or very ill patients have in the healthcare system.

Being coerced into assisted suicide could so easily happen. I heard of a 59-year-old woman who was very ill. Her family appeared concerned about her pain and constantly asked for her diamorphine to be increased. The medical team was unconvinced that the pain was so severe and the patient declined higher doses. Her 60th birthday passed with minimal celebration, after which the family rarely visited. Her fixed-term life insurance policy had expired.

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. But I will feel safe only when we recognise the benefits of a society which treats disabled people as equals and views difference positively. Only then will freedom of choice be meaningful.

Jane Campbell is a commissioner for the Disability Rights Commission

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