disability-rights – The Establishment https://theestablishment.co Mon, 22 Apr 2019 20:17:33 +0000 en-US hourly 1 https://wordpress.org/?v=5.1.1 https://theestablishment.co/wp-content/uploads/2018/05/cropped-EST_stamp_socialmedia_600x600-32x32.jpg disability-rights – The Establishment https://theestablishment.co 32 32 Should Feminists Embrace The ‘Right To Die’ Movement? https://theestablishment.co/who-decides-who-gets-to-die-with-dignity-66d5d88e4fb1/ Wed, 12 Jul 2017 22:01:48 +0000 https://theestablishment.co/?p=3836 Read more]]> The answer is complicated.

Content warning: assisted suicide

The defining feature of feminism, for me anyway, is freedom of choice — especially when it comes to bodily autonomy. This is why we march for Planned Parenthood and fight back against restrictive reproductive rights laws, and why access to transition care for trans people is supported in most feminist discourse.

Yet there is one bodily autonomy issue that pops up in the news from time to time that generally flies under the feminist-discourse radar — and when it does emerge as a point of debate within feminist communities, responses tend to be split: right to die, or so-called “death with dignity,” laws.

Currently, the District of Columbia and six U.S. states allow people with terminal illnesses to request and receive prescription medication to hasten their death: Oregon, Washington, Vermont, Colorado, California, and Montana. There have also been several bills proposed on this issue in other statehouses, including in my own home state of Maine. The right-to-die law in California took effect in June 2016, and between then and late November, roughly 50 people had gone through the end-of-life process.

In many ways, right-to-die legislation seems obviously feminist. Not only is it rooted in bodily autonomy, but the issue has a long — if relatively unknown — feminist history.

After watching her mother fight and ultimately lose a prolonged and painful battle with liver cancer in the first decade of the 20th century, feminist Anna S. Hall became an outspoken advocate for choice when it comes to end-of-life decisions.

Charlotte Perkins Gilman (Credit: Wikimedia Commons)

Prominent feminist and writer Charlotte Perkins Gilman, who took her own life in 1935 after being diagnosed with breast cancer, was also one of the earliest champions for death with dignity. In her suicide note, she wrote, “When all usefulness is over, when one is assured of unavoidable and imminent death, it is the simplest of human rights to choose a quick and easy death in place of a slow and horrible one. I have preferred chloroform to cancer.”

But as with any issue, there are also many layers and shades of gray. Right-to-die laws aren’t currently centered in modern feminist discourse — but should they be?

The answer is more complicated than it would seem at first blush.

The case for doctor-assisted suicide — or “aid in dying,” as it is sometimes referred to— is perhaps most convincing when applied to those who are terminally ill. But the choice to end one’s life is decidedly more fraught in other situations.

Sandra Bem, a prominent feminist and professor at Cornell University, made the news with her own suicide in 2014. She wasn’t terminally ill in accordance with the general standards of current right-to-die legislation, but she had been diagnosed with Alzheimer’s. She wrote extensively about her wish to end her own life before she lost the ability to decide for herself. As a New York Times article on her explained:

“No one in that inner circle tried to talk her out of suicide; they knew how fierce she could be once her mind was made up. All they asked was that she promise not to choose a method that would be particularly disturbing — using a gun or jumping off a bridge into one of Ithaca’s famously beautiful gorges. Sandy had contemplated both of those options, but she didn’t want that sort of death either. ‘What I want,’ she typed in her journal in an emphatic boldface font, ‘is to die on my own timetable and in my own nonviolent way.’”

Bem’s case is notable due to her lack of a terminal diagnosis; she would have been ineligible for doctor-assisted suicide in states where the practice has been legalized. With the exception of Montana — which requires a court to make determinations — the current states with right-to-die laws require two physicians to confirm that the person has less than six months to live. All of the states also require that the person be declared “of sound mind,” which as as the Times article put it, is “a difficult hurdle for someone whose brain is deteriorating” from Alzheimer’s.

Having gatekeepers determine if a person has a right to bodily autonomy raises obvious red flags, even echoing the often deeply flawed approval process needed for genital reassignment surgery (GRS); in order for a trans person to be approved for GRS, they must similarly convince two doctors of their diagnosis (gender dysphoria) and be evaluated for being “of sound mind.”


Having gatekeepers determine if a person has a right to bodily autonomy raises obvious red flags.
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Concerning right-to-die cases, official gatekeepers and other influential actors may also abuse their power, forcing people to make a decision to end their lives when they otherwise wouldn’t.

Take a recent case from the Netherlands, in which an unnamed woman in her twenties sought and ultimately won approval for assisted suicide after suffering from PTSD stemming from horrific sexual abuse from her childhood. According to a story in The Independent:

“Despite improvements in her mental state after ‘intensive therapy,’ doctors believed her multiple conditions were incurable and two years ago agreed to her wish to end her life. The doctors judged her to be ‘totally competent’ and that there was ‘no major depression or other mood disorder which affected her thinking.’”

Opponents of right to die laws were aghast that assisted suicide was deemed an effective treatment for the horrors of sexual abuse. And indeed, it’s certainly at least possible that mental-health professionals could have led the young woman to believe that her PTSD was unfixable, and thus unconsciously guided her to her ultimate decision.

The Many Faces Of Trauma

Turning to history reveals even starker examples of abuse. Most infamously, Nazis in Germany established “Aktion T4,” a euthanasia policy intended to eliminate anyone they deemed “undesirable” for their society. This policy targeted many different marginalized populations, but it should be noted that disabled people and those with mental illness were among the most brutalized under their program. In 1939, the regime authorized doctors to “decide that certain individuals ‘be accorded a mercy-death.’ These patients included those with schizophrenia, the criminally insane, and the chronically hospitalized.” The uncovering of the use of such euthanasia by the Third Reich in the aftermath of World War II opened feminist eyes to how a blanket endorsement of death with dignity could be abused by governments and systems with evil intent.

Celia Kitzinger, Professor of Gender, Sexuality and Conversation Analysis at the University of York, discussed the fallout in a paper recounting the feminist history behind right-to-die movements:

“The subsequent Nazi euthanasia programme meant an end to many liberals’ involvement in ‘right to die’ movements and has haunted campaigns ever since. For many feminists (and disability rights activists) legalizing assisted death is inextricably associated with fears that vulnerable people will be disproportionately at risk — that under the banner of ‘choice,’ women, the elderly and the disabled will be targeted for assisted dying (or feel pressured into ‘volunteering’ themselves).”

These pressures could be anything from feeling unwanted or unsupported by loved ones, to wanting to avoid being a financial or psychological burden to caretakers. These are very real and valid human emotions that must be weighed by everyone involved with doctor-assisted suicide.

In a story for The Guardian last year, international disability rights advocate Liz Carr honed in on these issues to make a compelling case against right-to-die laws:

“There is a fine line between those who are terminally ill and those who are disabled in public perception and the emotional power behind the campaign for assisted suicide is based on misplaced pity. Rather than telling us we have everything to live for — and we do — we are helped to the proverbial cliff edge and offered a push.

People — disabled and not, with many years or only a few months ahead of them — become suicidal for many, many reasons. We know from surveys in Oregon, one of just [five] states in the US where assisted suicide is legal, that the reasons people choose this option have little to do with pain, although this is always the emphasis of supporters of assisted dying.

In fact, loss of dignity, loss of autonomy, loss of ability to do daily activities, and fear of being a burden — reasons which are essentially more about the realities of living with a disability in our society — are all more important than pain.

It is worth keeping in mind, too, that, in the context of economic arguments about a health service overly concerned with ‘waste’ of resources, disabled people may be seen as a drain, just like the elderly.”

She goes on to point out that the National Health Service in Britain, through austerity, is already rationing health care, and she fears that more costly end-of-life care will be pushed aside in favor of much cheaper doctor-assisted suicide.

This is not to say that right-to-die laws should be wholly rebuked, as they ensure crucial choice for many, including those who are marginalized by society. Melanie Reid, a former columnist who broke her neck and back in a horse-riding accident in 2010, expressed her view in a piece for the Times during the 2012 debate in Great Britain over this issue:

“The fact is simply this…we are condemning growing numbers of elderly, terminally ill or disabled people to a terrible lingering twilight rather than a good death in the circumstances of their choosing. And we are condemning the people who want to assist them to the threat of criminal prosecution. This is a scandal.”

When right to die as an issue is framed in this way, it’s easy to see the common connection between the fight for reproductive rights, the fight for trans rights, and the right-to-die movement; all are about empowering people to make their own decisions about their own lives and bodies.

But in assessing right-to-die measures, we must also take an intersectional view by listening to and elevating the concerns of those most directly impacted by the issues at hand. As feminists, we must always trust individuals to make their own choices with their bodies, while simultaneously fighting to keep these decisions free from outside influence, whether from the government, from family members, or from doctors. We must examine this issue closely and continue to push for more research. And we must make sure that people are truly choosing death for their own, personal reasons, and not because they’ve been made to feel like they’re a burden.

Having agency over your own body is a core tenet of feminism — but the current gatekeeping system seems like a potential compromise on safety. Without proper protections, a person’s choice to die is no longer a choice at all.

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