I used to attend a social support group for people with degenerative neuromuscular conditions. We used to meet over lunch and I would observe a fellow group member called *David, who had a milder version of my condition, eat independently. The days when I could do this were long gone and the contrast between his physical abilities and mine were often a topic of conversation that he would raise. I could tell that he found the severity of my condition confronting, as if I was a mirror to a future that he was not looking forward to.
David took his own life by driving his motorised wheelchair into the Yarra River.
I believe the experience of degenerative disabilities is very different to having a more stable impairment. There is a constant grieving process that takes place as your body changes and there are fewer things that you can do without assistance.It does not help that we live in a society where gaining access to this assistance is a bit like pulling teeth. The rationing of services has been well documented, however, waiting lists are especially problematic when your condition is progressive. Sometimes, I think waiting for support is a fate worse than death.
I remember campaigning with my friend *Laura for more widely available and flexible attendant support services. Laura also had a degenerative muscle condition. I recall her telling me about her battles with inadequate services, services that were underfunded, inflexible and not designed to give her the choice and control that she needed in order to live life the way she wanted.
Laura was home alone when she took enough pills to end her life.
Note: asterisk indicates that the persons names have been changed.
I blogged earlier about another excellent contribution on the Ramp Up website by editor Stella Young published in the wake of the defeat of the euthanasia bill in Tasmania. Stella told of her own experiences which, according to Dr Fitzpatrick and many other disability activists, is a common experience.
As a disabled person, I'm accustomed to conversations about quality of life and dignity. Specifically, I'm accustomed to assuring people that my life is worth living. I'm short statured, a wheelchair user, and I frequently have bone fractures. All the visual cues that make me 'the other' are front and centre. People make all sorts of assumptions about the quality of my life and my levels of independence. They're almost always wrong.
I've lost count of the number of times I've been told, "I just don't think I could live like you," or "I wouldn't have the courage in your situation," or, my favourite one to overhear (and I've overheard it more than once), "You'd just bloody top yourself, wouldn't you?".
What we as a society think we know about what it means to live as a disabled person comes from cultural representations of disability seen through a non-disabled lens. And we, as people with disability, rarely get to tell our own stories.Also, social attitudes towards disabled people come from a medical profession that takes a deficit view of disability. This is my major concern with legalising assisted death; that it will give doctors more control over our lives.
Meghan Hussey, commenting on the Disability Horizons website provides an historical perspective:
The Eugenics Movement in the United States and Europe in the early 20th century was full of people calling for racial purity and advocated euthanasia. They saw people with disabilities as defective stains on humanity; an hindrance to their goal of human perfection.
Many people forget that people with disabilities were among the first victims of the Holocaust in Germany. Thousands of children and adults with disabilities in Germany were either killed after being deemed "life unworthy of life" or subjected to horrific experiments for the supposed betterment of mankind.
When they were not being killed for their differences, people with disabilities were being locked in institutions away from the mainstream population. These were often understaffed, unsanitary, and unmonitored. Children were written off as useless and never received education, therapy services, or in some cases even real human contact.
Hussey further described the dehumanizing of people with disability:
I advocate for disability rights because I believe in human rights. Unfortunately, people with developmental disabilities are still fighting to be seen as human.
At the root of many cases of discrimination, hate crimes, and even full-blown genocide is the dehumanizing of the people, turning someone into an 'it'. The Jews in Europe were called rats, the Tutsis in Rwanda were called cockroaches...Society keeps animals in the wild or in cages away from people and if they get dangerous they put them down.
Today, there are still people like philosopher Peter Singer, saying that those with severe intellectual disabilities do not deserve rights any more than animals, since some other species have supposedly higher levels of intelligence than they do.
|Baroness Jane Campbell|
Fitzpatrick also told the story of his friend, colleague and Member of the House of Lords, Baroness Jane Campbell. Jane was hospitalized with breathing difficulties and told by two specialists that she really wouldn't want to keep on living if that meant life with a respirator. She fought off sleep for three days out of fear that, had she slept, she might never wake up. These doctors made a 'quality of life' judgement about the Baroness - a deficit view about her disability.
These fears are real and founded on experience. We cannot dismiss them. In fact, a better way would be to ensure that all disabled people are heard; that their social supports fill their needs, are transparent and easily accessible. Only then can we truly begin to talk about choices.