I was born with spinal muscular atrophy, a so-called "terminal" condition. I cannot lift my head from the pillow unaided and I need a ventilator to help me breathe at night. I use a powered wheelchair and have a computer on which I type with one finger. I have a high-powered and fulfilling job as the head of a major national organisation. More importantly, I am fortunate to live in a borough that provides exemplary social care: a 24-hour personal assistant enables me to have an independent life, to be a wife to my husband and a person to my family and friends.
I know that if this care were to end tomorrow my life would be intolerable and I would consider suicide. Without my care package I would have to give up my job and rely on my husband to care for me.
My experience is the exception rather than the rule because every day in Britain a disabled person is made fully aware that his or her life is contingent, reliant on the goodwill of others; that it is a life placing untold strain and pressure on somebody who was once their husband, daughter or parent but whose character has been eclipsed by their role as a full-time carer; that rather than a fulfilled life, theirs is a life that has become a burden to others.
Such feelings are well-chronicled in research into why people choose to die. Studies in Oregon and Holland, where euthanasia is legal, revealed that a substantial number of people seeking assisted suicide gave "not wanting to be a burden" as the principal reason for seeking death.
Epithets such as "tragic", "burdensome" and even "desperate" are frequently used to describe disabled people's lives, and unless you are extraordinarily strong it's all too easy for disabled people to succumb to this negativity.
Non-disabled people are also tainted by this atmosphere, which is perhaps one reason why the assisted deaths of Reginald Crewe and later Robert and Jennifer Stokes courtesy of Dignitas, the Zurich-based euthanasia group, were accepted with such alacrity.
Despite the recent failure of a private member's bill to legalise voluntary euthanasia in this country, there is a sense that the British public favours legislation on the right to die. But many disabled people say that the focus should be on an agreed entitlement to essential services to independent living - an assisted living bill. Present reality, however, is a continent away from these aspirations.
In January I was hospitalised with severe pneumonia in both lungs. On two separate occasions, doctors told me they assumed that if I fell unconscious I wouldn't want to be given life-saving treatment. I was so frightened of what might happen to me that I kept myself awake for 48 hours. My husband brought in a photo of me in my graduation gown and stuck it on the bed-head to remind the hospital staff that there was more to me than the shrivelled form they saw lying in front of them. I was lucky: although I could barely breathe, I had an assertive husband insisting to the authorities that I had everything to live for. Imagine what it would be like if you were too weak to communicate. Or your relatives less positive about the quality of your life.
Our underfunded and discretionary systems of health and social care, coupled with rampant discrimination, are having fatal consequences for disabled people. But, rather than tackle these issues head on - to choose life, in Irvine Welsh's now famous phrase - the warping effects of our discourse on disability seem to have made death the only humane option.
Local authorities are having to limit the cost of care packages - often to the lower cost of living in residential care. There are wide discrepancies in provision for disabled people with similar needs; where you live and when you joined the queue are the determining factors for the type and quality of support you receive.
Disabled people are living in institutional care against their will - disability charity John Grooms, for example, has reported that 8,000 young adults are living in care homes designed primarily for elderly people - and otherwise have their independence threatened by lack of support on their own terms. Research by the disability rights commission identified a long list of barriers to independent living, including inadequate support to continue or take up employment, that are constantly being thrown up by social service departments.
A report by the Joseph Rowntree Foundation concluded that the government's economic and social policy initiatives treated the families of disabled children as "peripheral or invisible". Tackling inequality in this field, it said, will require "resources which policy initiatives to date have not allowed for".
In the 21st century, it is still seen as acceptable for disabled people to be living in institutions against their wishes, to be denied access to basic support to enable them to enjoy a family or social life, and to be guaranteed no more than the bare minimum of services necessary for day-to-day survival.
The arguments for a right to independent living are complex but vital. What level of independence are we trying to achieve, how integrated should it be with other services such as transport and leisure, who should be entitled to it and who should meet the costs? These are questions that society has a moral priority to answer before we take the path of legislating for assisted death.
Disabled people are still fighting for full participation and inclusion in life. We are decades away from a society embracing the quality of our lives as equal to those of non-disabled people. Only when, or if, this is enshrined in law and reflected in every aspect of our lives should we ever begin to consider legislation that assists people to end their lives.
Without our lives being seen as having equal value, any attempt legally to sanction hastening our death will exacerbate a culture that fears incapacity so much that it wants to extinguish it.
· Jane Campbell is a disability rights commissioner and chairwoman of the Social Care Institute for Excellence
