Liz Carr is a British activist, actor, comedian, essayist (there’s also a musical added to her resume, but more about that at another time).
Debate on euthanasia and assisted suicide has kicked up again in Australia. Liz made this video to make the case against legalizing it there – or anywhere, really – including the USA. The video embedded is captioned.
As we have been covering since spring, here, here, here and here, disability rights advocates around the country, the UK, Australia, and New Zealand held protests against the movie “Me Before You” for its hateful message that some disabled people are better off dead.
John shares the same disability as the fictional Will in the movie, who has everything in his life he would want, except that he is a quadriplegic. So he kills himself, and leaves his girlfriend money so that she might “live boldly.”
After helping to organize four June protests against the movie, two at his local cinema, he wrote this opinion piece in July for his local neighborhood paper, the Fenway News. Now, as some legislatures are considering assisted suicide bills, it’s worth reminding people that cultural attitudes reflected in film can influence what people believe about disability and how people react to disability.
Every evening for the past month, you’ve been able to watch me get euthanized at the Regal Fenway Stadium 13. Not to worry, it’s my choice, and neither fantastic wealth nor mutual love with a beautiful woman dissuade me.
This is the outline of the movie Me Before You, in which the audience gets plenty of laughs along the way as I—in the movie, my name is Will (Sam Claflin)—teach Louisa (Emilia Clarke), hired by my parents to cheer me up, to love life and soon enough, to love me. And when I/Will stay true to my desire to die, audiences have a good cry. Some theaters even supply patrons with Kleenex.
I use the first person because it’s my disability, shared with fictional Will, that is on the chopping block. Our disability is iconic, a powerful eliciter of suicidal urgings. I was talking by telephone to a reporter a few months ago, trying to explain why disability rights groups oppose legalized assisted suicide, when she blurted out, “I know I would want it if I was ever paralyzed from the neck down.” She didn’t notice when I told her those words are used to describe me.
Some percentage of people who see me think they would rather be dead, and a few have told me so directly. People get to have their opinions, of course, but this prejudice is broadcast again and again. So we defend our lives. In 2005, we protested the Oscar winner for Best Picture Million Dollar Baby, which along with Best Foreign Picture The Sea Inside presented disabled characters clamoring for death. I heard that some audiences cheered when Clint Eastwood’s Frankie murdered Hilary Swank’s Maggie.
Thanks to social media, this time around we’ve been able to organize multiple protests, across the US and in Britain and Australia, against the “better dead than disabled” message of Me Before You. Over the first four weekends of June, groups of disabled people and allies gathered outside the Regal Fenway 13 and Boston Common 19 to hand out flyers and hold a banner calling the film a “disability snuff movie.” The fallback line for suicide proponents, which we heard occasionally during our actions, is “choice,” as in every (disabled) individual should have the right to choose.
But the “choice” presented in Me Before You belongs solely to the screenwriter and author of the book by the same name, JoJo Moyes. From observing a couple of disabled family members, Moyes said “qualityof-life was very high in my mind.” She told another interviewer, “At what point does the quality become meaningless? At what point do you give someone the right to decide for themselves?”
I object to being told that my life is “meaningless,” and think JoJo Moyes is a bigot. Unfortunately for me and disabled people, the bigot wrote a book that sold millions and got made into a Hollywood movie.
Moyes constructed everything in Will’s life to be as wonderful as could be—except for that quality-of-life-killing disability. Moyes has Will tell Louisa at the end of the book that his death will free her. “I don’t want you to be tied to me, to my hospital appointments, to the restrictions on my life. I don’t want you to miss out on all the things that someone else could give you.”
Will’s death is presented as a sacrifice of sorts, a death that gives life. Will leaves Louisa a lot of money so that she can go forth and “live boldly.” That phrase, used without irony, is the tag line of the movie. Living boldly, it seems, is for the nondisabled.
Like Will, I was depressed two years after my injury, but it was the peer support and solidarity of other disabled people that got me through that time. I shudder to think of newly injured people hearing about this movie. I want them to learn, as I did, that we all have the ability to adjust to circumstances as long as we are provided with love, support, and opportunities.
We disabled people proclaim that suicidal people, disabled or not, deserve the same suicide-prevention services as teenagers, the only target of most states’ anti-suicide programs.
It was heartening at our protests to receive so much support from moviegoers and passersby. People took pictures of us, decided to ditch the film after talking to us, and a few even passed out flyers with us. As one young couple said leaving the Fenway theaters, “you were right, it was terrible!”
John Kelly is a longtime East Fens resident and disability rights advocate. He founded Neighborhood Access Group (NAG) in 2000 and is now director of Second Thoughts Massachusetts: Disability Rights Advocates against Assisted Suicide.
For the online version of this article, go to page 4 here. The article includes a photo entitled “Protestors gather outside the Fenway Regal Cinema” and depicting about 14 protesters, including at least 5 wheelchair users, gathered outside a theater with a banner and signs.
[Editor’s Note: John Kelly lived in New Jersey in his younger years and traveled back there to testify on October 6, 2016 in opposition to the latest assisted suicide bill, A2451. His oral testimony is below, and his full written testimony is here.]
Chair Burzichelli, Vice Chair Lagana, Members of the Committee:
My name is John Kelly, and I am the New England Regional Director for Not Dead Yet, the national disability rights group that has long opposed euthanasia and assisted suicide. I am also the director of Second Thoughts Massachusetts, Not Dead Yet’s Massachusetts affiliate.
We are concerned that this bill is before the Appropriations Committee. It suggests that cost-containment really is a major factor behind the push for assisted suicide laws. So when in the state of Oregon, Barbara Wagner and Randy Stroup received letters from Oregon Medicaid denying coverage for prescribed chemotherapy. The letters did, however, offer to cover the negligible cost of assisted suicide. Because assisted suicide will always be the cheapest treatment, its availability will inevitably affect medical decision-making. This will actually end up constraining choice.
A2451 threatens you, every single resident of New Jersey, because all of us are vulnerable to misdiagnosis. “Terminally ill” is defined as:
“Terminally ill” means that the patient is in the terminal stage of an irreversibly fatal illness, disease, or condition with a prognosis, based upon reasonable medical certainty, of a life expectancy of six months or less.”
When it comes to life and death, there is no such thing as “reasonable medical certainty.” Of the millions of misdiagnoses every year, many are terminal misdiagnoses. We know this because of the thousands of people who “graduate” from hospice each year. Every year in Oregon, people have lived longer than their six-month terminal diagnosis.
Every year in New Jersey, it is estimated that 1/10 people over the age of 60 are abused, almost always by adult children and caregivers. Although “self administration” is touted as one of the key “safeguards”, in about half of Oregon program deaths, there is no evidence of consent or self-administration in the death. If the drugs were administered by others without consent, no one would know. The request form constitutes a virtual blanket of legal immunity covering all participants in the process.
Assisted suicide laws inevitably take the lives of innocent people through mistakes, coercion, and abuse. Please reject this bill.
One of the most frequently repeated claims by proponents of assisted suicide laws is that there is “no evidence or data” to support any claim that these laws are subject to abuse, and that there has not been “a single documented case of abuse or misuse” in the 18 reported years. These claims are demonstrably false.
Regarding documented cases, please refer to a compilation of individual cases and source materials pulled together by the Disability Rights Education and Defense Fund entitled Oregon and Washington State Abuses and Complications. For an in-depth analysis of several cases by Dr. Herbert Hendin and Dr. Kathleen Foley, please read Physician-Assisted Suicide in Oregon: A Medical Perspective.
The focus of the discussion below is the Oregon Health Division data. These reports are based on forms filed with the state by the physicians who prescribe lethal doses and the pharmacies that dispense the drugs. As the early state reports admitted:
“As best we could determine, all participating physicians complied with the provisions of the Act. . . . Under reporting and noncompliance is thus difficult to assess because of possible repercussions for noncompliant physicians reporting to the division.”
Further emphasizing the serious limits on state oversight under the assisted suicide law, Oregon authorities also issued a release in 2005 clarifying that they have No authority to investigate Death with Dignity case.
Nevertheless, contrary to popular belief and despite these extreme limitations, the Oregon state reports substantiate some of the problems and concerns raised by opponents of assisted suicide bills.
Non-Terminal Disabled Individuals Are Receiving Lethal Prescription In Oregon
The Oregon Health Division assisted suicide reports show that non-terminal people receive lethal prescriptions every year.
The prescribing physicians’ reports to the state include the time between the request for assisted suicide and death for each person. However, the online state reports do not reveal how many people outlived the 180-day prediction. Instead, the reports give that year’s median and range of the number of days between the request for a lethal prescription and death. This is on page 7 of the 2015 annual report. In 2015, at least one person lived 517 days; across all years, the longest reported duration between the request for assisted suicide and death was 1009 days. In every year except the first year, the reported upper range is significantly longer than 180 days.
The definition of “terminal” in the statute only requires that the doctor predict that the person will die within six months. There is no requirement that the doctor consider the likely impact of medical treatment in terms of survival, since people have the right to refuse treatment. Unfortunately, while terminal predictions of some conditions, such as some cancers, are fairly well established, this is far less true six months out, as the bill provides, rather than one or two months before death, and is even less true for other diseases. Add the fact that many conditions will or may become terminal if certain medications or routine treatments are discontinued – e.g. insulin, blood thinners, pacemaker, CPAP – and “terminal” becomes a very murky concept.
The state report’s footnote about “other” conditions found eligible for assisted suicide has grown over the years, to include:
“. . . benign and uncertain neoplasms, other respiratory diseases, diseases of the nervous system (including multiple sclerosis, Parkinson’s disease and Huntington’s disease), musculoskeletal and connective tissue diseases, cerebrovascular disease, other vascular diseases, diabetes mellitus, gastrointestinal diseases, and liver disease.”
Overall in 2015, 7%, or 68 individuals, had conditions classified as “other”. In addition, it should be noted that the attending physician who determines terminal status and prescribes lethal drugs is not required to be an expert in the disease condition involved, nor is there any information about physician specialties in the state reports.
The Only Certifiers of Non-Coercion And Capability Need Not Know the Person
Four people are required to certify that the person is not being coerced to sign the assisted suicide request form, and appears capable: the prescribing doctor, second-opinion doctor, and two witnesses.
In most cases, the prescribing doctor is a doctor referred by assisted suicide proponent organizations. (See, M. Golden, Why Assisted Suicide Must Not Be Legalized, section on “Doctor Shopping” and related citations). The Oregon state reports say that the median duration of the physician patient relationship is 12 weeks. Thus, lack of coercion is not usually determined by a physician with a longstanding relationship with the patient. This is significant in light of well-documented elder abuse-identification and reporting problems among professionals in a society where an estimated one in ten elders is abused, mostly by family and caregivers. (Lachs, et al., New England Journal of Medicine, Elder Abuse.)
The witnesses on the request form need not know the person either. One of them may be an heir (which would not be acceptable for witnessing a property will), but neither of them need actually know the person (the form says that if the person is not known to the witness, then the witness can confirm identity by checking the person’s ID).
So neither doctors nor witnesses need know the person well enough to certify that they are not being coerced.
No Evidence of Consent or Self-Administration At Time of Death
In about half the reported cases, the Oregon Health Division reports also state that no health care provider was present at the time of ingestion of the lethal drugs or at the time of death. Footnote six clarifies:
“A procedure revision was made mid‐year in 2010 to standardize reporting on the follow‐up questionnaire. The new procedure accepts information about time of death and circumstances surrounding death only when the physician or another health care provider is present at the time of death. This resulted in a larger number of unknowns beginning in 2010.”
While the only specific example mentioned is the “time of death,” other “circumstances surrounding death” include whether the lethal dose was self-administered and consensual at the time of death. Therefore, although “self administration” is touted as one of the key “safeguards”, in about half the cases, there is no evidence of consent or self-administration at the time of ingestion of the lethal drugs. If the drugs were, in some cases, administered by others without consent, no one would know. The request form constitutes a virtual blanket of legal immunity covering all participants in the process.
Pain Is Not the Issue, Unaddressed Disability Concerns Are
The top five reasons doctors give for their patients’ assisted suicide requests are not pain or fear of future pain, but psychological issues that are all-too-familiar to the disability community: “loss of autonomy” (92%), “less able to engage in activities” (90%), “loss of dignity” (79%), “losing control of bodily functions” (48%), and “burden on others” (41%).
These reasons for requesting assisted suicide pertain to disability and indicate that over 90% of the reported individuals, possibly as many as 100%, are disabled.
Three of these reasons (loss of autonomy, loss of dignity, feelings of being a burden) could be addressed by consumer-directed in-home long-term care services, but no disclosures about or provision of such services is required. Some of the reported reasons are clearly psycho-social and could be addressed by disability-competent professional and peer counselors, but this is not required either. Moreover, only 5.3% of patients who request assisted suicide were referred for a psychiatric or psychological evaluation, despite studies showing the prevalence of depression in such patients.
Basically, the law operates as though the reasons don’t matter, and nothing need be done to address them.
Conclusion
The Oregon assisted suicide data demonstrates that people who were not actually terminal received lethal prescriptions in all 18 reported years except the first, and that there is little or no substantive protection against coercion and abuse. Moreover, reasons for requesting assisted suicide that sound like a “cry for help” with disability-related concerns are apparently ignored. Thus, the data substantiates problems with the implementation of assisted suicide laws and validates the concern that the risks of mistake, coercion and abuse are too great. Well-informed legislators on both sides of the aisle should vote against assisted suicide bills.
Today disability advocates mourn the death of Jerika Bolen, a 14-year-old black, gay teen with spinal muscular atrophy type II (SMA), who died in hospice after requesting help to end her life. Earlier this summer, a call for donations to support her dream of a “last dance” prom in her honor focused national media attention on her request to die, which was characterized in the media as “brave” and “inspirational.”
SMA Type II is not a condition that is typically fatal in children and teens. In fact, while some people with SMA die in younger adulthood due to respiratory complications, people with type SMA Type II often live into their 60s and beyond. Certainly, SMA would not result in the death of a fourteen-year-old who is receiving appropriate medical care. Our experience as disability rights advocates, many of whom have SMA and similar neuromuscular conditions, is that people with Type II SMA and the level of function that Jerika had as a teenager live long into adulthood.
While some media have attacked disability advocates who called for an investigation of the extremely questionable medical care provided to Jerika, it would appear that no authorities felt it necessary to obtain answers to the many questions the reported facts raise. In the midst of our shock, grief and despair at a system that would so callously throw away the life of a beautiful disabled girl, we have asked, and continue to ask, those questions.
Regarding physical pain . . .
What was the cause of Jerika’s reported extreme physical pain? Contrary to media misinformation, pain is not characteristic of SMA Type II, so what caused her pain?
Did Jerika have any competent doctors who specialized in SMA Type II or neuromuscular disabilities?
What explains the reported 30-38 surgeries that Jerika experienced between ages 8 and 14? This number of surgeries is highly unusual for people with SMA Type II. Were these surgeries the source of her pain?
Were pain relief experts ever consulted to address Jerika’s pain? Why did she wait to take medication until her pain was at a level 8 or higher on a scale of 10, while pain management physicians advise taking medication much earlier, “nipping it in the bud” to prevent pain from reaching that level?
Regarding depression and emotional pain . . .
Given the well established ways that suicidal ideation in teens is addressed to prevent tragedy, what forms of counseling or support were enlisted to address Jerika’s desire to die?
Was any qualified professional trained in teen suicide prevention brought in to counsel Jerika? Were any professionals working with Jerika aware of studies finding that quality of life is not correlated with physical impairment or use of non-invasive breathing support?
From whom did Jerika get the idea that she could go into hospice and get assistance to end her life? She had reportedly spoken of this off and on for a few years. What were the motivations of any adult who gave such an idea to a child?
Was any qualified professional with a similar disability, someone familiar with the emotional issues facing a black, disabled, gay teen, brought in to counsel Jerika?
Regarding the systemic medical and legal issues . . .
Why do Wisconsin governmental authorities allow children with non-terminal disabilities to have their lives ended based on adult decisions to withhold medical care, while this is not permitted for non-disabled children?
What were the qualifications of the doctor who ordered hospice for Jerika? Was it the same doctor or facility that conducted the extreme number of surgeries?
Why would a hospice provider participate in ending the life of a child who is not terminally ill? Besides discontinuing Jerika’s nightly bipap breathing support, what additional steps resulted in her death after only 18 days from her scheduled entry into hospice?
Disability advocates who mourn Jerika’s untimely death would like these questions to be answered, but we’ve seen the media frenzy in almost exclusively one-sided applause for her suicide, no questions asked. Our grief at the tragedy of her loss is exponentially magnified by the certainty that the story told in the press will inspire others with disabilities and their parents to repeat this tragedy.
Those of us with disabilities dream of equality and justice. Jerika Bolen deserved better quality health care and the same suicide prevention that a non-disabled teen would receive. We ask one last question: What might have happened if Jerika’s request for a “last dance” had been met with overwhelming public and media encouragement to live instead of a massive thumb on the scale in support of her death?
