Letter by Sam Connor to Victorian and South Australian Members of Parliament. Two years ago, I sat with my mother while she died.She'd been dying a long time. Our family is touched with what we call the 'gypsy curse', the BRCA2 gene mutation which affects about one of every forty individuals with Ashkenazi Jewish ancestry. Continue reading

By Paul Russell: Yesterday my wife, Anne, attended the Disability Ageing and Lifestyle Expo at the Adelaide Show Grounds.Anne's aim, as always, is to support our son, Joseph who has a disability. One thing we have learned over the years is that you really do have to ask the right questions of the right people if you want the right answers about support. This seemed a good opportunity. Continue reading

By Joan Hume (Article originally appeared in Eureka Street) Living with a disability can be a real pain. We are constantly being judged and found wanting: by our appearance (never attractive enough), our state of being (we lead lives of unmitigated misery and suffering), our economic cost (leaners and lifters) and our mental competence (can she really talk?).Public debates on our worth not only dismiss the validity of our lived experience but have profound implications for political and social responses. Even though we live in supposedly more enlightened times, it is a perpetual struggle to have our voices heard and taken seriously. Many people think we can't do anything much at all. Continue reading

By Liz Carr (Article first appeared on The Guardian website) If I said I wanted to die, the press, celebrities and the public would support my choice, seeing it as rational and understandable. Hell, they would probably set up a go-fund-me campaign to help me make it happen.Yet when a healthy, non-disabled person wants to kill themself it's seen as a tragedy, and support and prevention tools are provided. If nothing else convinces me that to legalise assisted suicide is not a safe option for many of us then this does. Suicide is not seen as socially desirable - so why is assisted suicide seen as compassionate when it's for ill or disabled people? Continue reading

By Kevin Yuill (article first appeared at Spiked On Line) Imagine if Usain Bolt, who has now officially retired from Olympic competition, told the world that, after he ticked a few more things off his 'bucket list', he intended to kill himself. How would the world respond? Probably with horror and disbelief.But this is precisely what 37-year-old Belgian Paralympian Marieke Vervoort announced to the world this week. She said that sport was her main reason for living, and spoke of the suffering she endures because of her chronic, degenerative - though not imminently fatal - condition. 'I fight fear, sadness, suffering, frustration', she said. Although she was 'still enjoying every little moment. When the moment comes when I have more bad days than good days, then I have my euthanasia papers.' Continue reading

Robyn Hunt from Not Dead Yet NZ responds to MP, David Seymour by explaining why people with disabilities strongly oppose euthanasia and assisted suicide, in her article published on August 24 in The Spinoff. Hunt writes: I assure David Seymour that assisted suicide is a really big and complicated deal. It is no coincidence that disabled people all over the world oppose it. Our opposition arises from a (largely invisible) dark and troubled history, negative attitudes and behaviours towards disabled people and current human rights abuses. Disabled people see assisted suicide as dangerous because of their already marginalised status. Some disabled people are particularly vulnerable.Disabled and other people who oppose assisted suicide are not religious fanatics. Not Dead Yet Aotearoa was founded on disability rights not religious convictions. Assisted suicide supporters attempting to diminish the opposition by ignoring some and making sweeping statements about others is not helpful.Part of our unease relates to evidence that lives of disabled people are valued less than those of others. There is a history of euthanasia and eugenics, which have gone hand in hand for disabled people. The most notable, yet largely unknown T4 programme initiated by the Nazi Third Reich was the forerunner to the better known holocaust of Jews, gays, gypsies and others who did not meet the Aryan ideal. Around half a million people with of all kinds of impairments were killed. Some were tortured with "experimentation" before death. The first child to be euthanised was killed at the request of his parents. They were labelled "useless eaters". Many disabled people today still feel the residual power of that label as they struggle with cuts to services, parsimonious supports and subtle pressures to find work. Continue reading

This article was published by William Peace on his Bad Cripple blog on Wednesday August 10. William Peace is a Syracuse University Professor and disability activist JAMA Internal Medicine has been in the news and references to a recent article abound on various social media platforms. Here I refer to "States Worse than Death Among Hospitalized Patients with Serious Illnesses" by Emily Rubin and other researchers at the University of Pennsylvania. Over eight months a team of researchers surveyed 180 patients who had been admitted to a hospital in Philadelphia with serious illnesses that included heart and lung disease. All the patients interviewed were 60 years and older. The study was conducted between July 1, 2015 and March 7, 2016. None of the patients had limitations on any life sustaining treatment in their electronic medical records. Researchers asked these patients to hypothesize whether they would prefer to die than be in a progressively worse state of being. In typically terse language Rubin wrote: Continue reading

by Canberra writer and member of Lives Worth Living, Daniel Pask (pictured) Disability activists from Melbourne and Canberra gathered to protest the message of the film, Me Before You at a screening in Melbourne.Me Before You focusses on the lead character who becomes a quadriplegic after an accident. (Spoiler alert) The film closes with his suicide in the Dignitas death facility in Zurich. Continue reading

On the eve of the opening in Australia of the movie Me Before You, Melbourne based disability activist, Jax Jacki Brown has written on Junkee.com to express her concerns about the negative disability tropes exploited by the movie. She joins disability advocates across the globe criticising Me Before You through articles and demonstrations that have followed the film's opening across the English-speaking world."On the eve of the Australian release of Me Before You, the final touches are being applied to t-shirts, banners and coffin-shaped tissue boxes by many people with disabilities across Australia. The film, which has been courting controversy in the US and the UK, is set to be subject to protests here too. I am preparing to wear my t-shirt proudly to the Melbourne protest with its slogan "Disabled lives are worth living!", as I hand out flyers proclaiming "our lives are not a tragedy!"" Continue reading

Opening in June in Australia, the Hollywood movie Me Before You should be shunned, avoided and condemned. Me Before You is a story about a rich young banker who becomes a quadriplegic. He is carered for by a young woman engaged by his family to keep him from taking his own life. They develop a love relationship, but that is not enough and he eventually heads of to Dignitas to suicide.Critics in the disability community have called it a 'disability snuff movie'. It's portrayal of disability centres around pity. The male character's desire for death, understandable and accepted. Continue reading