Amy Hasbrouck: HBO VICE “Right To Die” Documentary Is Propaganda, Not Journalism

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[Editor’s Note: This excellent article by Amy Hasbrouck, the executive director of Toujours Vivant/Not Dead Yet Canada, was originally published by the Euthanasia Prevention Coalition here.]

“Right to Die debate” – another propaganda film promoting assisted suicide.

HBO’s Vice documentary series presented “Right to Die,” a 27-minute “debate” on assisted suicide.

To call this a debate is ridiculous. Less than two minutes was dedicated to opposition to assisted suicide. The segment implied that the opposition in the U.S. was led by the Catholic church, and didn’t even mention or interview disability rights organizations that oppose assisted suicide. The corresponded did admit that there is “some evidence” of a slippery slope in the Belgium and the Netherlands.

The documentary, narrated by correspondent Vikram Gandhi, is centred around the euthanasia death of Antoinette Westerink, a Dutch woman with a “personality disorder” whose euthanasia is shown during the segment. Ms. Westerink sees herself as preparing to emerge from a chrysalis, and having no regrets about her impending death. However, her adult son and daughter are upset that the psychiatrist who approved her euthanasia did so after only three meetings, and did not consult her family before making the determination.

During the segment, Vikram Gandhi speaks to Christina Symonds, a person who is as yet minimally affected with ALS. As he introduces her, images of “Late stage ALS ‘patients’” are shown; a person in a hoyer lift, and others in hospital beds using external breathing assistance.

Symonds shows her fear of becoming disabled when she says: “The only thing you’ll be able to move in the end are your eyeballs. I don’t want to go through that horror. And I certainly don’t want to put my kids through that.”

Her husband Teddy Symonds adds: “She doesn’t want to sit back and be taken care of and be wiped and be fed. She wants to go ‘I’m done.’ It’s not getting any better. Whatever was gonna work is not working anymore and that’s where I draw the line.’ And if you have that ability, it’s power.”

Ned Delojsi from the California Catholic Conference is quoted twice, for a total of just over a minute (46 seconds then 20 seconds). Though he devotes most of his time speaking about the danger for vulnerable persons, his remarks about faith are used first, to discredit him to the secular audience. Later, Theo Boer raises questions about the dramatic increase in euthanasia in the Netherlands during his 40-second on-screen appearance.

Nelojsi’s interview is followed by a quote from Christy O’Donnell, a person with cancer who uses a wheelchair and states “When they are sitting in this chair with a stage IV diagnosis and a child that they’re leaving or a husband that they love, then they can make their own decision.” Unfortunately the producers did not speak to those disabled people who are “sitting in this chair” yet still oppose assisted suicide.

Howard Glick, another person with a degenerative disease (frontal temporal degeneration) also expresses his fears over becoming disabled. “What do I want to do, waste away in a wheelchair? Not even recognizing my children? Never mind the cost involved.”

As in many similar documentaries, the producers had their minds made up on the issue before they began to explore it, and so neglected to portray the arguments against assisted suicide and euthanasia fairly. They played upon public fears of becoming disabled, using the term “dignity” as the opposite of disability, and implying that the only way to retain control in one’s life was to have assisted death.

In addition, the producers made it clear that usual methods of suicide were unacceptable substitutes for the help of a medical practitioner, nor did they describe what happens when complications arise during assisted suicides and euthanasia. Instead, they promoted the suicide kits marketed by Derek Humphry. The segment also downplayed the objections of doctors who oppose the practice as a violation of the principles of palliative care, lumping them in with the religious community.

This is an excellent piece of propaganda, but not journalism.

 

Disability Advocates Push for Better Healthcare for Jerika Bolen

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Many have heard of 14-year-old Jerika Bolen’s plans to die, which received extensive news coverage over the summer. Disability advocates may have wondered why the story didn’t appear in the NDY blog sooner. The short answer is that, behind the scenes, we were trying to push for better health care, especially expert quality pain relief to address the primary reason Jerika stated for wanting to die. We were trying to respond to her comments about her life.

On Sunday, Jerika was scheduled to go into hospice, even though her disability is no where near the “terminal” stages. For twelve hours a day, at night, she uses breathing support, a biPAP, similar to the more common CPAP, with a breathing mask. (I use one about 20 hours a day for a similar neuromuscular condition.) As Carrie Lucas of Disabled Parents Rights wrote in our letter to the Wisconsin Department of Children and Families:

This non-terminally ill child is reportedly going to be placed into hospice sometime in August. While Ms. Bolen maintains optimal respiratory health using a bipap machine with a mask to assist breathing at night, she is able to breathe to sustain life without that device for a very long period of time daily. The only way her breathing will stop is to discontinue any form of breathing support, including her bipap, while administering a sufficient dose of morphine to suppress her breathing – in short euthanasia. If this plan goes forward, it goes beyond the allowed “double effect” of making a hospice patient comfortable even if it may also shorten life. Ms. Bolen is not terminal and being comforted through the dying process, but rather her death could only be induced with medication.

Many of those who joined in our letter are adults with Jerika’s specific diagnosis, SMA Type II, leaders in NMD United. Many of us remember middle school as a difficult time, combining the usual teenage issues with the experience of a highly stigmatized identity in our image conscious society.

And we have big questions about her reported 38 surgeries and high levels of pain, questions about the competence of her doctors. So we urged the state agency to intervene and secure better quality health care and pain relief for Jerika, as well as disability competent mental health counseling.

Based on news coverage of our August 4th letter, Disability groups seek to intervene in teen’s plan to die, the Wisconsin protection and advocacy organization reportedly made the same request.

But as of today, we don’t know whether Jerika and her mother decided to continue with the plan to enter hospice, we don’t know whether the Wisconsin Department of Children and Families decided to intervene and secure better health care for Jerika, and we don’t know whether the hospice provider is willing to deliver enough medication over a sufficient period of time to produce total respiratory failure in a 14-year-old disabled girl who only uses non-invasive breathing support 12 hours a night and is not really terminally ill.

Face To Face: Challenging the “Better Dead Than Disabled” Message

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Two video projects led by people with disabilities, one in the U.S. and one in Canada, are challenging the mainstream message that it’s better to be dead than disabled. We all know that personal stories are often the most effective forms of communication, and that’s exactly what these projects offer in face-to-face communication.

The U.S. video project is called “Live On!” and is led by Dominick Evans through the Center for Disability Rights. Our readers were first introduced to Live On! through its video produced in response to the Me Before You film and disability rights protests. While the initial video included many faces, subsequent pieces will be short 3-4 minute takes by an individual with a disability.

If you would like to learn more about the project or consider submitting a video, here’s a message from Dominick with what you should know:

The #LiveOn project is a way to send the message that disabled lives are worth living, and for disabled people to be proud of their disability. The #LiveOn project is loosely based upon the It Gets Better campaign, which sent the message to LGBTQIA individuals that life is worth living, and it is okay and important to be proud of who you are. We would like to give a similar message to people with disabilities.

Our target audience is anyone with an acquired disability or progressive disability, individuals with mental health disabilities and/or suicidal ideation, young people who may be angry about their disabilities thanks to bullying or abuse, and anyone with a disability who may be struggling, depressed, dealing with internalized ableism, or who might be thinking about giving up on life. Disabled people do not often receive suicide prevention when they show signs of wanting to give up or have suicidal thoughts. With very little disability representation that is visible and positive, living life with a disability can often seem daunting and lonely.

So, you may be wondering how you can help. We are asking anyone with a disability to make a video for the #LiveOn project. The videos are directed at our target audience, and will feature disabled individuals explaining how times can be rough, but things can and will improve. Life with a disability is not only worth living, but it can be quite fulfilling. Feel free to talk about a difficult time in your life, and how you were able to move past that, and don’t forget to discuss how much disability pride you have, and how being disabled is an important part of your identity.

Here are the video guidelines:

  • Videos should be filmed in vlog style. This means you talk directly to the camera as though you are talking to the target audience.
  • Keep videos around 3 minutes in length.
  • Introduce yourself and say what your disability is at the beginning of your video.
  • Add in the #LiveOn message by trying to work in the expression “Live on” near the end of the video.

DO NOT UPLOAD YOUR VIDEOS TO YOUTUBE. Put the videos in Dropbox or use Google Drive to send the videos in .mov or .mp4 format.

Please send all videos to: liveonprojectcdr@gmail.com

***

The Canadian Project is well underway already, led by Catherine Frazee and others. As reported in New Mobility, Project Value Asserts Disability Is Not Worse Than Death:

A group of Canadians are out to testify that there’s so much more to life with a disability than one of “suffering that could last decades,” as recent media coverage would have you believe.

Project Value is founded by five prominent members of Canada’s disability community meant to counter act the narrative that disability is a fate worse than death through a series of videos by people with disabilities testifying to how truly fulfilling and exquisitely varied their lives are.

“There is more, much much more, to our lives than misery, helplessness, and pain. We want to counteract the dangerous effects of those stereotypes and the prejudice that they fuel, by projecting the energy, vitality, resilience and contribution of disabled people’s lives,” says co-founder Catherine Frazee, a 62-year-old professor emerita and professor of distinction in the School of Disability Studies at Ryerson University in Toronto who has spinal muscular atrophy type 2. . . .

In addition to the New Mobility article, Project Value has received mainstream press coverage here and here, among others. A number of very powerful and moving videos are already posted, with more to come in this important effort.

Sometimes They Really ARE Out To Get You: Allergies, EpiPens, Playgrounds & Price Gouging

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Back in my teens (late 60s-mid 70s), a popular poster displayed the following statement: “Just because you’re paranoid doesn’t mean they AREN’T out to get you”. I think it’s still fairly popular – not to mention relevant – today.

First, as most people already know, the EpiPen, a portable injector absolutely essential to people with life endangering allergies, has undergone an astronomical price increase, making it unaffordable to many uninsured or underinsured families. Here’s info from one of the many articles dealing with this health crisis:

Doctors and patients are blasting the Mylan pharmaceutical corporation for hiking up the price of their signature EpiPen product from around $100 in 2008 to a staggering $500 and up today — a 400% increase.

“I see it firsthand that a lot people call me and tell me they can’t afford the medicine,” Dr. Douglas McMahon, an allergist based in Maplewood, Minnesota, told the Daily News. “This is the only life-saving medicine they can use for this and it puts a lot of restraint on them. People will have to make lifestyle changes if they can’t afford this.”

The portable device can prevent allergic reactions from potentially fatal incidents like bee stings or peanut ingestions.

Make no mistake: People will die because of this price increase and some of them will be children. When that happens, coroner should put “Coporate Greed” as cause of death. Corporate greed isn’t just targeting people with life-endangering allergies; it’s also impacting insulin-dependent people with diabetes:

From 2011 to 2013 the wholesale price of insulin went up by as much as 62 percent. From 2013 to 2015 the price jumped again, from a low of 33 percent to as much as 107 percent, said Dr. Mayer Davidson, professor of medicine at the Charles R. Drew University of Medicine and Science in Los Angeles, who has carefully tracked the rapid and repeated increases.

“This borders on the unbelievable,” Davidson said, citing an extremely concentrated insulin which “in 2001 had the wholesale price of $45. By last year, the cost had skyrocketed to $1,447” for the same monthly supply.

Susan Pierce, a diabetes educator at Philadelphia’s Chestnut Hill Hospital, said she’s seeing similar increases, with her patients reporting that the cost of their insulin is doubling, tripling or worse.

I have a lot of friends on the front lines of fighting for survival in this greed-dominated system of healthcare who embrace the slogan “Capitalism Kills.” I do know that greed kills and it seems that the current climate in Washington is to let greed run free – no matter who dies.

And while greed may not be a factor, news from Toronto indicates that kids with peanut allergies may be being targeted there:

Police are investigating another report of peanut butter smeared across playground equipment in a Toronto park — the fifth such recent incident.

Toronto Police said the latest incident occurred at Wadsworth Park, near Davenport Road and Laughton Avenue, on Wednesday. It was the first case that was formally reported to police.

“It is the only report of any peanut butter, anywhere in the city, at any park, on file at the Toronto Police,” said Jenifferjit Sidhu, a Toronto Police media relations officer. “When we got there, it was already cleaned up.”

The article includes statements from parents and others expressing concern over the possibility of kids with peanut allergies having deadly allergic reactions to skin contact with peanut butter smeared on playground equipment.

Corporate greed, potentially deadly vandalism. It’s a new world that makes some of my posters from the late 1960s more relevant than ever.

In Case You Missed It: John Kelly Video Interview On “Me Before You” & Assisted Suicide

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[Editor’s Note: Mea Culpa, we meant to post a blog on this as soon as we got the video captioned, and it’s been posted in our “In the News” section, but catching up belatedly here in the blog. . .]

In this in-depth interview, Not Dead Yet’s New England regional director John Kelly critiques the pro-assisted suicide message of the film “Me Before You.” The film is part of an ongoing trend of Hollywood movies, John tells host Chris Lovett of Boston Neighborhood Network News, produced “to confirm people’s beliefs that our lives are not worth living.” The segment includes the suicide prevention public service announcement targeting disabled people created by the Center for Disability Rights in Rochester New York. John also comments on the assisted suicide bill recently defeated in the Massachusetts legislature.

Chris asks John about Will’s suicide, that isn’t “this is a case where somebody makes a certain choice and I guess, you know, couldn’t people make a choice like that and just do a film about it?” John redirects the question to the “choice” made by author Jojo Moyes to construct a fictional character in order to promote suicide for disabled people:

Well, the choice is the author’s choice, Jojo Moyes, who both wrote the book and wrote the screenplay for the movie. And she said that when she wrote the book, “quality of life was very high in my mind, I had two relatives who required 24-hour care just to stay alive. I think if you deal with that situation on any kind of lengthy basis, you can’t help but ask yourself questions about how somebody lives and what kind of quality of life you can offer someone.  At what point does the quality become meaningless and at what point do you give someone the right to decide for themselves?” So she’s a bigot and she wanted to write a book, and unfortunately for us, millions of people bought the book and are now seeing the movie. We never see the opposite side of the picture, and she admitted that she didn’t speak to any quadriplegics before writing the movie. It’s a cartoon caricature in which a wealthy man who has everything going for him – including a woman who is beautiful, with whom he’s mutually in love – and yet he still decides to kill himself.