NDY UK Advocate Jamie Hale On Why Disabled People Fear Assisted Suicide

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A great opinion piece by Jamie Hale begins with a photo of two women in wheelchairs, seated in front of several artful props that suggest a graveyard. The photo has a caption above and below: I can see no safeguards to prevent people being pressured into ending their lives. What we need is more support to live . . .  ‘All I see is a system which divides lives, offering suicide prevention to some, and euthanasia to others.’ Campaigners against assisted suicide outside the Royal Courts of Justice in London.”

The article itself begins:

Opposition to assisted suicide – also called assisted dying – is characterised as being the preserve of the religious, stuffy and outdated, like religious opposition to gay marriage and abortion. In reality, some of the loudest voices opposing it are those of people with disabilities – because we have the most to fear. A poll done by Scope (a disability charity) showed that the majority of disabled people (64%) were concerned about moves to legalise assisted suicide.

Arguments around the legality of suicide and the right to refuse treatment are often conflated with assisted suicide. Suicide is legal, and there is already a right to refuse treatment. People with mental capacity can also create an advance directive to ensure their wish to refuse treatment is respected in future. This leaves people often able to die on their own terms. What assisted dying advocates are requesting is to create a system in which it is legally and morally permissible for people to engage in a deliberate action designed to end someone else’s life.

***

Some 5% of people in Oregon dying by assisted suicide cited financial pressures as a cause. Meanwhile, the number citing being a “burden on family/friends/caregivers” increased from 13% in 1998 to 55% in 2017. This tallies with Scope’s research that the majority of people with disabilities are concerned that legalising assisted suicide might lead to disabled people choosing it in order not to be a burden on others.

To read the full article, go here.

Disability Activist Stephanie Woodward Quoted In An NY Newspaper Article

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An article in the Altamont Enterprise included some great quotes by disability rights activist Stephanie Woodward.

Stephanie Woodward, director of advocacy at the Center for Disability Rights, said that “assisted suicide has a discriminatory, disparate impact on disabled people that is deadly and can’t be reversed.”

Data from the state of Oregon, where medical aid-in-dying has been allowed for over two decades, according to Woodward, shows that the top five reasons people choose assisted suicide have nothing to do with pain, but instead have to do with disabling conditions, like “feeling like a burden on my family,” or “feeling like you have a loss of autonomy or independence,” or “loss of bladder or bodily function control.”

Actually, in the data, these responses do not fall under a heading of reasons for wanting to die, but “end of life concerns.”

Woodward said, “These are all disabling conditions that people with disabilities face every single day, and we don’t believe that they should be a basis for wanting to die.”

The idea that they do make terminally ill people in Oregon want to die clearly shows the need for more supports and services, Woodward said, adding, “If our health care does not provide the services and support people need to live, then we cannot create an option to die and call it an option.”

Unfortunately, Woodward’s important insights are left till near the end. The article focuses on a few people who want assistance to commit suicide, downplaying the fact that what assisted suicide bills really do is grant a virtually unassailable immunity to doctors and other people involved in the death. In practical terms, the bills offer no protections for a patient from healthcare providers or family members who have financial or other motives to coerce or engage in any form of foul play. 

The article also discusses how hospice is insufficient, but then provides examples of people getting healthcare treatments they don’t want. These examples make no sense given the clear right to refuse treatment. Despite all the article’s comments about hospice, it never mentions the surprising fact that New York has an extremely low rate of hospice use – it’s #48 in the nation.

Michael Burgess of Guilderland, the former director of the New York State Office for the Aging and a spokesman for the New York Alliance Against Assisted Suicide, said he likes to seek common ground; what people on both sides of this issue have in common, he emphasized, is concern for people who are suffering at the end of life.

“A lot of older people can be depressed and can feel like it’s time to go,” Burgess said, “or they feel like they’re being encouraged in that direction.”

Burgess wants to see hospice and palliative care expanded and more widely publicized, so that more people know more about it. Also key, he says, are social and spiritual support. Having a “network of care” in place that includes all of those elements, he said, even in states like Oregon that have enacted legislation, can often be enough, he said.

Introduction by Sarah Cavar – New NDY Intern!

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Sarah Cavar

Hello all, I’m Sarah Cavar and I use they/them/theirs pronouns. I’m proud and delighted to be Not Dead Yet’s first intern. I’m a person of several labels: I’m genderless (my preferred term is “neutrois”), a lesbian, Mad/disabled, and neurodivergent. I’m a full-time student, and when I’m not doing student-y things, I’m reading, writing (fiction, creative nonfiction, poetry, and news), editing (zines and for my college’s newspaper), and working at my college (as a peer writing mentor and as an assistant to our office of disability services).

I’m nineteen and going into my junior year this fall; my major is a subject called “critical social thought.” Within the wide, varied collection of critical-theory related areas of study covered by this label, I focus on critical disability/mad studies and gender & sexuality studies. I marry these two in my focus on pathologization (how peoples’ minds and bodies are marked as disabled/deviant), biological essentialism (the reduction of peoples’ behavior, appearance, etc. to biological things like genes and hormones rather than social conditions), power relations, and the consequences of those things across spacetime.

I was first exposed to disabled community and activism through the internet, in a completely unintentional way. When I was twelve, I stumbled upon the then-recently-published, now-disability-internet-classic blog post Quiet Hands by Julia Bascom. From there, I fell down a rabbit hole of autistic blogs and bloggers –– all of whom resisted the stereotype that autistic people are “lost” to the world, an idea perpetuated by Autism $peaks and their ilk.

From the blogs I read, I gained access to critical analyses of dangerous, ableist content. I also began to read the similar blogs of otherwise disabled writers and activists. I remember where I was when I watched A$’s infamous video, “Autism Everyday.” I was at my dining room table, alone and overwhelmed. In the video, a mother of an autistic child discusses, in front of said child, the way raising an autistic person drives her to consider committing murder-suicide. I learned quickly that the shiny veneer of “tolerance” that some disabled people see is always moments from giving way to the true, deadly intentions of abled society.

Then, in 2013, after already having followed the writings of writer-activist-powerhouse (and genderless person, like me!) Amanda Baggs (who prefers sie/hir pronouns, which I will be using for this reason), I learned that there were a number of doctors who wanted hir to die. This awakened me to the logical conclusion of ableist “cure” and “quality of life” rhetoric: efforts toward the eradication of disabled people. NDY covered the case, as did many others. Today, Baggs remains happily alive, but I learned from following hir case that there are many unknown disabled people who would not be so lucky as sie was.

I carried Baggs’ case with me as I learned more about eugenics, and also as I myself experienced medical/psychiatric abuse and mistreatment. I read the work of Harriet McBryde Johnson (RIP). In my first year of college, I read the work of Dorothy Roberts as well as others, which discussed the intersection of race and class with dis/ability and who is permitted to live and die.

I learned that becoming-disabled is believed to destroy the possibility of a “good life” –– that is, a “productive life” –– instead of starting a life both unique and valuable. Given the social conditions that call devalued lives “disabled” and then call “disabled” lives worthless, I know that we cannot divorce “personal” decisions around assisted suicide from cultural ideas of worth that exclude disabled people.

Free choice –– including the choice to live or die –– is not possible in a society whose very culture wants some minds and bodies gone; a culture in which this idea permeates our institutions, language, and relationships. It is dangerous to assume any person’s thoughts of suicide to be separate from social and cultural factors, and this includes the thoughts of those considered “terminal”.

My opposition to assisted suicide also stems from my understanding that the medical/psychiatric system routinely denies its patients autonomy –– especially when those patients are marked as disabled, as racialized, as non-men, as a sexual minority, as migrants, and as poor. In the medical system, it’s easy and frightening to observe the state of power relations today, including the way “professionals” hold the ability to dictate who lives and dies. Assisted suicide itself rests on the notion that the figure of The Doctor should be the gatekeeper between life and death, and that we all ought to defer to them.

We as disabled people must resist entrusting our lives and deaths to those schooled to see us as less-than-human. For this same reason, I as a psychosocially disabled, neurodivergent person do not entrust my mental wellbeing to someone who wants to cure the world of my existence. As knowledge is power, we must also gain an understanding of the forces that shape who and what we are in this world, realizing that no one is worthless in and of themselves, but is instead marked that way by oppressive outside sources. For me, opposing assisted suicide is not only rooted in a love and acceptance of all bodyminds as they are, but also in a devotion to exposing and changing the norms that produce “worthless” bodies in the first place.

My academic work has given me a lens through which I can peer at experiences I and those I care about have had. I hope to help write and argue on behalf of all of those living these experiences daily, but not taken seriously in the academic arena. I hope to share my knowledge with a wider audience through Not Dead Yet, make connections and learn from others, and take on some of the everyday labor required to make NDY’s content available and accessible for all.

Thanks for reading!

 

 

Oath, NDLA and Getty Images Launch New Disability Image Collection

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[Editor’s Note: Not Dead Yet is a member of the Steering Committee of the National Disability Leadership Alliance (NDLA). Below is the project’s press release, to which I added a personal quote for our own distribution of this announcement.]

Launching on Global Accessibility Awareness Day, the partnership aims to depict authentic and diverse representations of people with disabilities in the media

New York, NY – May 17, 2018 – Oath, a subsidiary of Verizon (NYSE, Nasdaq: VZ) and a global media and technology company, today announced a partnership with the National Disability Leadership Alliance (NDLA), a cross-disability coalition led by 17 national organizations headed by people with disabilities, and Getty Images, a world leader in visual communications, to launch The Disability Collection – a growing collection of images that more accurately portrays individuals with disabilities and breaks stereotypes. To expand and grow the Collection, Oath, the NDLA and Getty Images developed a comprehensive set of guidelines for how to authentically reflect people with disabilities in photography, which will be shared and promoted across Getty Images’ global network of photographers, launching today on Global Accessibility Awareness Day.

“People with disabilities have historically been underrepresented, and often misrepresented in the media,” said Mike Shebanek, Head of Accessibility at Oath. “We believe the media has the power to shut down stereotypes and we are calling on the industry to commit to more inclusive representation. Together we can create this long overdue change.”

Many of the images of disability that are traditionally used in the media reflect only the “heroic” or the “pitiful”— stereotypes of disability. The Disability Collection will repicture disability in a way that is dignified, modern, diverse, authentic and human. The project invites photographers to portray disability as a natural part of someone’s identity, instead of portraying disability as something that needs to be “cured,” “fixed” or overcome. Disability is intersectional so the Collection will intentionally include representation across age, ethnicity, sexual orientation, gender identification, socio-economic, religion and culture with a focus on traditionally underrepresented groups.

“At a time when imagery is the most widely spoken global language, it has never been more important to produce and promote a visual language that is progressive and inclusive, and to support diverse voices in doing so,” said Rebecca Swift, Director of Visual Insights at Getty Images. “While we cannot change what people publish or click on overnight, we can provide better alternatives for those looking to create more authentic stories. The Disability Collection strives to be a collection of authentic and empowering images of people with disabilities in everyday life.”

Getty Images’ customer search data shows the significant desire for high-quality, modern images that accurately represent people with disabilities. Global search data from 2016 to 2017 indicates that searches for “wheelchair access” increased 371% year over year on GettyImages.com. Additionally, “disabled worker” was up 254%, “autism awareness” increased 196%, and “deafness” was up 144%.

“Member organizations of the National Disability Leadership Alliance – and the disability community in general – have worked for decades to see ourselves accurately reflected in media. Despite some progress, often the media still gets important details wrong,” said James Weisman, NDLA Steering Committee. “This landmark initiative — the first of its kind developed with the guidance of the disability community itself — signals a promising new way forward. Oath and Getty Images understand that media will only get real about disability when disabled people lead the way. NDLA is thrilled about the launch of the collaboration and its future growth.”

“As a member of NDLA’s Steering Committee, I’m hopeful that these images will help challenge the ‘better dead than disabled’ mindset that’s all too prevalent in Hollywood,” said Diane Coleman, president and CEO of Not Dead Yet. “The images are active, fun, and people need to see that.”

Disability leaders have been central to this project since the formation, and the project is guided by insights from disability-specific focus groups hosted by Oath and the NDLA. Oath, the NDLA, and Getty are encouraging photographers, including those with disabilities, to join in creating and growing this groundbreaking Collection. Getty Images and Oath will be providing the necessary resources and opportunities to help content creators broadcast their vision, including funding art directed shoots and competitions that encourage photographers to capture this imagery.

To learn more about The Disability Collection, visit www.thedisabilitycollection.com.

About Oath

Oath, a subsidiary of Verizon, is a values-led company committed to building brands people love. Oath reaches one billion people around the world with a dynamic house of media and technology brands. A global leader in digital and mobile, Oath is shaping the future of media and technology. For more on Oath, visit www.oath.com. Learn more about the work Accessibility at Oath is doing at Oath.com/Accessibility.

About Getty Images

Getty Images is one of the most trusted and esteemed sources of visual content in the world, with over 300 million assets including photos, videos, and music, available through its industry-leading sites www.gettyimages.com and www.istock.com. The Getty Images website serves creative, business and media customers in nearly every country in the world and is the first place people turn to discover, purchase and share powerful visual content from the world’s best photographers and videographers. Getty Images works with over 240,000 contributors and hundreds of image partners to provide comprehensive coverage of more than 160,000 news, sport and entertainment events each year, impactful creative imagery to communicate any commercial concept and the world’s deepest digital archive of historic photography.

Visit Getty Images at www.gettyimages.com to learn more about how the company is advancing the unique role of still and moving imagery in communication and business, and enabling creative ideas to come to life. For company news and announcements, visit our Press Room, and for the stories and inspiration behind our content, visit Stories & Trends. Find Getty Images on Facebook, Twitter, Instagram, LinkedIn, Pinterest and Tumblr, or download the Getty Images app where you can explore, save and share the world’s best imagery.

About the National Disability Leadership Alliance

National Disability Leadership Alliance (NDLA) is a national cross-disability coalition that represents the authentic voice of people with disabilities. NDLA is led by 15 national organizations run by people with disabilities with identifiable grassroots constituencies around the country. The NDLA steering committee includes: ADAPT, the American Association of People with Disabilities, the American Council of the Blind, the Association of Programs for Rural Independent Living, the Autistic Self Advocacy Network, Disability Rights Education and Defense Fund, the Hearing Loss Association of America, Little People of America, the National Association of the Deaf, the National Coalition for Mental Health Recovery, the National Council on Independent Living, the National Federation of the Blind, the National Organization of Nurses with Disabilities, Not Dead Yet, Paralyzed Veterans of America, Self-Advocates Becoming Empowered, and the United Spinal Association.

Diane Coleman’s Letter Published In Daily Star

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On May 4th, the Daily Star in Oneonta, New York published an editorial in favor of legalizing assisted suicide. Among other things, it completely ignored the opposition of many disability organizations, whose leaders testified very strongly against the NY assisted suicide bills in hearings held April 23rd and May 3rd. The following letter to the editor from Diane Coleman responding to the editorial was published today:

The Daily Star’s opinion piece in support of legalizing assisted suicide [May 4, Aid-in-dying bill should get state approval] left out a major group when it mentioned the bill’s opponents, including religious opponents and physicians, but omitting disability organizations.

Among the groups testifying against assisted suicide bills at the recent Assembly Health Committee hearings were ADAPT, Center for Disability Rights, Center for Independence of the Disabled-NY, Jewish Disability Empowerment Center, Not Dead Yet and United Spinal Association.

Comparing people with a terminal prognosis to a pet that is “unable to care for itself and is in constant pain” raises understandable concerns among disabled people who need personal care services like me. When it comes to killing our pets, studies show it’s more about putting them out of the owner’s misery than the pet’s.

Pain is not the issue reported by people requesting assisted suicide in states where it’s legal, but rather feelings like “loss of dignity” and “being a burden on others,” disability issues that can be successfully addressed by supports like consumer-controlled in-home care and peer counseling.

So let’s stop conflating pets and people. In a society with an alarming increase in elder abuse, the risks of coercion and foul play should be obvious. There are no “safeguards” that work behind closed doors. Bills that put lethal drugs in the home of an old or disabled person are too dangerous to pass.

Diane Coleman
Rochester

Coleman is president and CEO of Not Dead Yet.