[Apologies to those who’ve already seen this letter, which I emailed to the members of Parliament in Victoria, Australia on Monday at the request of Margaret Dore. It’s different from my usual letter, more personal. Margaret’s Choice Is An Illusion and the Euthanasia Prevention Coalition both shared it, which I appreciate and so, a bit belatedly, it’s here as well. Sadly, a close majority decided to ignore the dangers of the bill and passed it, making it the first Australian state to do so. While most people’s eligibility is based on a six-month prognosis, the bill includes a “special” provision extending that “to 12 months for people with neurodegenerative diseases such as Motor Neurone Disease.“]
Neuromuscular conditions and the definition of “terminal”
I am writing behalf of Not Dead Yet, a national disability rights group in the U.S. that opposes legalization of assisted suicide. We understand that a proposal in Victoria would pertain specifically to neuromuscular disabilities. This letter will focus on misdiagnosis and the uncertainty of terminal predictions by doctors, as well as the significance of breathing support for those of us with these conditions. My own experience illustrates the issues.
At the age of six I was misdiagnosed as having muscular dystrophy and my parents were told that I would die by the age of 12. A few years later I was re-diagnosed with spinal muscular atrophy, a progressive neuromuscular condition which has a longer lifespan. Since age eleven, I have used a motorized wheelchair. Beginning 17 years ago I have used breathing support at night. The type of support I need is called a BiPAP. Over the years, the pressures required to sustain my breathing increased.
I am now age 64. Four years ago, the doctors determined that I do not have spinal muscular atrophy, and I am now diagnosed with another neuromuscular label, congenital myopathy. About two and a half years ago, I went into respiratory failure. Since then I have used breathing support most of the day as well as at night. If I did not use this support, I would likely have respiratory failure within a few days at most. Under most definitions, I qualify as “terminal,” even though I have already lived two and a half years this way.
Throughout my adult life, I have worked full time, first as an attorney and then directing nonprofit disability related organizations. Over the last two years, I have continued to run Not Dead Yet, which has four staff and numerous volunteers across the country. I have spoken at conferences, published articles, been interviewed by at least 20 press outlets, submitted testimony in legislatures, and provided the day-to-day management an organization requires.
As a severely disabled person who depends on life-sustaining treatment, I would qualify for assisted suicide at any time if I lived where assisted suicide is legal. If I became despondent, for example if I lost my husband or my job, and decided that I wanted to die, I would not be treated the same as a nondisabled and healthy person who despaired over divorce or job loss. Where assisted suicide is legal, I would be treated completely differently due to my condition.
This is just one example of how slippery the definition of terminal really is. Under assisted suicide policies, many people with disabilities would qualify for assisted suicide and be denied the suicide prevention and other supports that nondisabled people could take for granted if they expressed a desire to die. Assisted suicide laws are inherently discriminatory against old, ill and disabled people.
We urge you to vote no on the assisted suicide bill. The dangers of mistakes and abuse are simply too high, not only for people like me, but for everyone.
Diane Coleman, JD, MBA
Not Dead Yet