Carrie Ann Lucas Dedicated Her Amazing Skills To Save Lives

This article was published by Not Dead Yet on Feb 25, 2019.

Diane Coleman

By Diane Coleman
Not Dead Yet President & CEO

Across the country, people who knew and worked with Carrie Ann Lucas are mourning her untimely death at the young age of 47. Over the last year, we watched as insurers denied what she needed and doctors couldn’t take the time to listen to one of the sharpest minds in our movement explain how to integrate their treatments with her body’s needs. We’re grieving, and we’re angry.

We’re also honoring her amazing life. Carrie began serving on NDY’s national Board in January 2013. She made so many unique and abiding contributions to the disability movement that it would be impossible to capture them all. But here are some of the ways that Carrie worked to save lives through her incredible efforts on behalf of Not Dead Yet.

World Federation Protest
 

In September 2014, Carrie traveled from her home in Colorado to Chicago to participate in the NDY protest of the World Federation of Right To Die Societies’ biannual conference. She was a very skilled photographer who visually documented three days of protest activities which can be viewed via a link on our website page about the protest. One of these photos is the banner on our home page.

Resisting Assisted Suicide in Colorado

Carrie took the lead in organizing a group of disability activists to fight assisted suicide bills and initiatives in Colorado. Not Dead Yet Colorado members testified beginning in February 2015, as shown in a press release: Disability Activists from Not Dead Yet and Other Colorado Organizations to Testify in Opposition to Colorado Assisted Suicide Bill. The bill died in committee, as reported by the Denver Post.

But that wasn’t the end of the issue. Several months later, NDY Colorado Issued a “Media Advisory Opposing Proposed CO Constitutional Amendment on Assisted Suicide.” The amendment didn’t go anywhere.

The bill came back in 2016, and Carrie testified before the Colorado Senate State Senate, Veterans, and Military Affairs Committee on February 3rd that year:

“I am a person with multiple disabilities. I have a progressive neuromuscular disease that has caused me to lose muscle function throughout my entire body. I have weakness in every muscle in my body, including my facial and eye muscles. My organs are affected, I have low vision, and I am very hard of hearing. I have a gastrostomy tube, and I am dependent on a ventilator to breathe. Without my ventilator, I don’t have years to live. I don’t have 6 months, 6 weeks, or 6 days, I have hours. I have a terminal condition – very much like ALS, and I would be covered by this bill. I understand the sponsors have said this bill is not for the disabled, but respectfully the sponsors are incorrect. This bill directly affects me, my family and my community. 

“If I were to become depressed, either situational depression, or major depression, and this bill passes, I could go to my doctor and ask for a lethal prescription. Because I have a disability, and because physicians are terrible at evaluating quality of life of people with disabilities, I would likely be given that lethal prescription, rather than be referred for mental health treatment. And if my doctor did not give me the lethal prescription, I could simply doctor shop until I found one who would. A woman in my situation but without my disabilities would not get a lethal prescription, and would most likely encounter a vigorous effort to ensure she did not take her life. That is disability discrimination.”

She also put on her lawyer hat and further explained what’s wrong with the bill from that perspective. To read her full testimony, go here. Both Carrie and Anita Cameron, who lived in Colorado at that time, also had op-eds published which are excerpted with links in an NDY blog. Again, the bill did not make it through the committee.

So next, assisted suicide proponents went for a ballot measure, which Carrie, the Colorado NDY group and ADAPT protested by holding a funeral march: Disability Activists from Not Dead Yet and ADAPT Engage in Funeral March to Protest Assisted Suicide Ballot Measure. Unfortunately, the ballot measure passed.

Still, it is never too late to educate people about the dangers of making assisted suicide another “medical treatment” in our insensitive and profit conscious healthcare system. This past November, we blogged about how Carrie did just that on a Facebook program called “Imperfect Union”, which produced a Video of Carrie explaining some of the dangers of assisted suicide laws to a proponent.

Me Before You

When the ridiculous assisted suicide movie “Me Before You” came out, Carrie rolled up her sleeves and applied her graphics skills to pull together material from our sister organization, Not Dead Yet UK, and develop a banner and flyers that disability activists around the country used to hold protests of the movie. Many people sent photos from their protests to her, so she put them together in a video, accompanied by Johnny Crescendo’s brilliant song “Not Dead Yet.”

VIDEO: The Disability Community Responds to Me Before You movie

Jerika Bolen

O

Jerika Bolen

f all Carrie’s contributions to NDY’s work, the one I think about most often is her leadership in the effort to save the life of 14-year-old Jerika Bolen. Like Jerika, Carrie along with several of us in NDY experienced teenage years as a person with serious, progressive neuromuscular disabilities. Jerika said she wanted to die, but she was not treated like a suicidal nondisabled 14-year-old would be. We were horrified as her story unfolded. We received hate mail from nondisabled people in response to our efforts.

After Jerika’s death, Carrie did a very moving public radio interview explaining the disability discrimination that ultimately led to her death. John Kelly handled the creation of a captioned video of media photos of Jerika along with the interview to ensure that Carrie’s message would be heard and seen as widely as possible. Here’s a little of what she said:

“If we’re going to let children make these decisions, then we should be able to let children make ‪these decisions regardless of disability. ‪So we have to then be willing to say that the depressed fourteen year old who broke ‪up with her boyfriend who wants to die should get to die as well. ‪Otherwise this is disability discrimination, because some children get intensive suicide ‪prevention and other children don’t. ‪And it’s based only on disability, and that’s discrimination. 

‪”Either it’s okay for everybody or it’s not okay. ‪It’s either one or the other. ‪But we should not be saying it’s okay for a disabled teenager to die, because people who don’t ‪have disabilities have an imagination of what quality of life should be like for a disabled person, ‪and that is poor. ‪ 

“Because they can’t imagine in their own heads what it would be like to live with a disability, ‪when in fact those of us living with a disability, with the same disability ‪are telling you, no, it’s really not bad. ‪There’s something else going on here because we have that lived experience. ‪We know that. ‪We are the experts in this.”

More about the struggle to save Jerika’s life is available in the NDY blog here.

Carrie’s work earned her center seat in the annual award given by New Mobility magazine which named those who fought to save Jerika as its People of the Year – The Resisters. In a drawing, the magazine depicted Carrie as the superhero she was.

The most popular articles in 2016 on euthanasia and assisted suicide.

Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

In 2016, Canada officially decriminalized euthanasia and California decriminalized assisted suicide. The disability rights movement were right to protest the movie - Me Before You and the Euthanasia Prevention Coalition produced the documentary - The Euthanasia Deception documentary.

Good news. The South Africa Supreme Court rejected euthanasia, the New Mexico Supreme Court rejected assisted suicide, and South Australia rejected euthanasia.

We have hope. Our supporters wants Caring and Not Killing options and they oppose giving physicians, or others, the right in law to be directly involved with killing patients.

The 10 most popular articles posted on the Euthanasia Prevention Coalition blog in 2016.

1. Boycott the movie - Me Before You: "Disability Death Porn." Posted May 26.
2. California Assisted suicide law prompts insurance company to deny coverage to terminally ill woman. Posted Oct 20, 2016.
3. Canadian Senate passes euthanasia bill in time for their summer break. Posted June 17.
4. South Africa Supreme Court rejects euthanasia. Posted Dec 6.
5. The Euthanasia Deception documentary. Posted Sept 30.
6. Advice to Canada from Belgium: Safeguards are an illusion. Posted April 28.
7. Woman dies by euthanasia, may only have had a bladder infection. Posted Nov 14.
8. New Mexico Supreme Court: There is no right to assisted suicide. Posted June 30.
9. Canada's euthanasia bill provides a perfect cover for murder. Posted April 14.
10. The Declaration of Hope. Posted Jan 1.

More information updates:

• Dutch euthanasia deaths continue to rise in 2015.
• Belgian 2015 euthanasia report: Deaths continue to rise.
• Oregon 2015 assisted suicide report - another 26% increase.
• Washington State 2015 assisted suicide report. Assisted deaths increase by 31.7%.
• Switzerland: 26% increase in assisted suicide deaths in 2014.
• Quebec euthanasia report: 14% non-compliance with the euthanasia law.
• Do Not Kill Me: I oppose euthanasia and assisted suicide.

NDY Release: “Me Before You” Protesters Call For PSA To Prevent Copycat Suicides

Contacts:

Diane Coleman 708-420-0539

John Kelly 617-536-5140

For Immediate Release:

“Me Before You” Protesters Call For PSA To Prevent Copycat Suicides

Disability rights advocates who protested the film “Me Before You” in cities across the United States are calling on Warner Brothers to add a public service announcement to further releases of the film to help prevent copycat suicides.

In a letter sent today to Kevin Tsujihara, CEO of Warner Brothers, 19 national and 25 state, local and regional disability organizations stated:

“The public’s primary frame of reference can be shaped by what people see in movies and television. Storylines like this perpetuate stigma and discrimination based on disability. We are especially concerned that audiences will believe the desire to kill oneself is normal for those who need a high level of care. This inaccurate belief has been perpetuated by Warner Brothers track record of distributing other films, such as Million Dollar Baby and The Sea Inside, both of which emphasized the same dangerous message. 

“. . . Therefore, to reduce the risk of a “copycat” suicide effect, as well as negative impacts on individuals and families in the midst of critical health care decisions, the responsible thing to do is add a public service announcement to online and home entertainment releases at the beginning of the film.”

The public service announcement recommended by the disability organizations is Live On. Disabled Lives Are Worth Living, produced by the Center for Disability Rights in Rochester, New York.

Disability protests of Me Before You received substantial press coverage in late May and June. Members of Not Dead Yet UK protested at the London premier on May 24th, which garnered significant coverage (Guardian, Buzzfeed) during the protest and in the days following.

The last big example of this tired theme was Million Dollar Baby, which came out before the major growth of social media but still resulted in protests covered in the New York Times,” said Stephen Drake, research analyst for Not Dead Yet (USA).

Disability rights writers and bloggers also blasted the film for its oppressive portrayal of living with significant disabilities like quadriplegia. Examples include articles by disability studies scholar Bill Peace and activist and filmmaker Dominick Evans. Some have been featured in mainstream outlets like Emily Ladau’s article in Salon, Lauren West’s in Huffington Post and Ben Mattlin’s in the Chicago Tribune.

Not Dead Yet’s New England regional director John Kelly has the same level of spinal cord injury as Will Traynor, the lead male character in Me Before You. “Book and screenplay author JoJo Moyes admits she knows nothing about quadriplegics,” said Kelly, “yet her ignorance is allowed to promote the idea that people like me are better off dead. No one’s suicide should be treated noble and inspirational. Our suicides should be viewed as tragedies like anyone else’s.”

More information this topic:

• People with disabilities comment on Me Before You.
• Boycott - Me Before You - Disability Death Porn.

Disability author angry over association with Me Before You movie.

Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

EW News reported that Francesco Clark, an ambassador for the Christopher and Dana Reeves Foundation and an entrepreneur who founded a skincare line for people with disabilities, is angry that his memoir, Walking Papers, is referenced in the film Me Before You. 

Walking Papers tells the story of Clark's life after he experienced an accident in his early 20's that resulting in him living with quadriplegia.

EW News reported Clark as saying:

“I’ve worked tirelessly to show people that being quadriplegic isn’t the end of your life, it’s another beginning,” 

“While I am by no means taking a stance on the issue of assisted suicide, I feel compelled to express that I am angry to be unwittingly associated with a storyline that suggests the only option for those who sustain injuries like mine is death.”

Francesco Clark

Clark distanced himself from the movie:

“I had no involvement in the making of this movie, and am in fact saddened by the association,” 

“I will continue to spread a message of positivity and hope for those who have experienced spinal cord injuries, either directly or as a loved one. I am a prime example, along with many others, that life does not just ‘go on,’ it gets better and better with each day.”

The disability community has protested Me Before You throughout the world.

Australian Assisted Dying Report - A sugar coated poison pill.

“vulnerable people—the elderly, lonely, sick or distressed—would feel pressure, whether real or imagined, to request early death” House of Lords.

B

Paul Russell

y Paul Russell

The Legal and Social Issues Committee of the Victorian Parliament handed down its Report into End-of-Life choices in Victoria today.

The extensive report makes some valuable comments and recommendations in respect to improvement in palliative care.

It acknowledges that access to palliative care is patchy, is overburdened and needs improvement. In a country rated recently as second in an international table for end-of-life care, it still remains that the availability of such care is more closely related to postcode than it is to need.

The committee heard from many individuals whose family members had passed away in circumstances that were clearly far from what all Victorians would want and certainly far from best practice. The committee seems to take it as read that such cases are compelling proof that Victoria needs a regimen of ‘assisted dying’ – euthanasia or assisted suicide. Few, I contend, are that clear.

While family members submitting their stories to the committee often (but note: not always) called for legislative change, the submissions and stories may well have been evidence of poor care, lack of care options or, indeed, refusal of good care options; we simply do not know. For the committee to seem so easily to have accepted that poor deaths require the State of Victoria to help people to suicide is a travesty as much as it is the potential abandonment of people in great need.

Certainly, the admission that palliative care is still not able to meet the needs of Victorians is an important one and we welcome all policy and planning decisions that bridge the gap between need and availability. Sadly, however, the committee seems intent that, for those who cannot access such care, being made dead is an option. This is a failure of the committee’s stated aims to improve choice; suicide in such circumstances is no choice at all.

Of course, when the committee talks about ‘assisted dying’ they really mean euthanasia or assisted suicide, or both. That they seem so reluctant to call a spade a spade is rather telling. The reality is that they are recommending suicide:

At the end of life (final weeks or months of life). Suffering from a serious and incurable condition which is causing enduring and unbearable suffering that cannot be relieved in a manner the patient deems tolerable.

It remains for the government to respond to this report within six months, so any legislative framework may not necessarily follow the suggested framework. Still, there will be many who made submissions calling for law reform who will be disappointed; who, indeed, would not qualify.

How any doctor can accurately predict that the person is in the ‘final weeks or months of life’ is not stated. Nor is it easy to predict. While the intent seems to be to provide a minimalist approach, perhaps in an attempt to appear moderate and thoughtful, the reality is otherwise.

In the described framework the person does not need to be actually dying from a condition. In April this year a Quebec man who had been partially paralysed for a number of years but who was not dying, starved himself to the point where he was actually dying from starvation so that he could fulfil the criteria for assisted suicide. He was living with a disability. Death for disability may well be an accepted reason for suicide under the proposal, just as it was an acceptable reason to want to die according to the Supreme Court of Canada.

No more potent example of disability discrimination exists currently than the new Hollywood movie, Me Before You that sees a quadriplegic young man commit suicide in a Swiss clinic. Disability advocates across the globe are outraged by the depiction of disability as being ‘worse than death’ going so far as to call the movie ‘disability snuff porn’ and asking people to boycott the film. That the makers of this film simply don’t get the problem speaks to the reality that many in the disability community talk about; being made to feel that death is better than disability. The Victorian Parliament has, perhaps unwittingly, only reaffirmed those concerns.

The committee seems to be claiming a mandate for action when no mandate exists. Approximately 78% of substantive submissions (submissions of detail and from health providers, institutes, lobby groups etc.) were either against euthanasia and assisted suicide or were neutral and preferring to focus on end of life care more generally. Overall, the total submissions were about 56% in favour with the remainder either being opposed (approx. 35%) or neutral (approx. 7.3%).

The clear mandate is for better care.

There is much more to be said about this report, not all of which is unacceptable.

Failing to gain any publicity are the two dissenting reports by members of the committee. They are appended in the table of contents under one line, yet they comprise a far more robust analysis of available evidence than the entire Majority Report.

The Hon Inga Peulich MLC summarizes the concerns about human destruction via assisted suicide well:

"Any accidental loss of life – even the loss of one life, means such a regime cannot be justified, just as the loss of life, due to capital punishment, deliberate or due to a possible miscarriage of justice, cannot be justified and was the reason for its abolition."

Daniel Mulino MLC’s analysis should be read first, before the Majority Report. It forms not only a sound academic and rigorous approach but also, by implication, is damning of the narrow, outcome focus of the Majority Report:

“Moreover, the rapid growth in documented cases of euthanasia and assisted suicide probably materially understates the actual prevalence of the practice. There is a widespread failure of safeguards and procedures across jurisdictions, including low rates of reporting. 

“While legalisation was supposed to bring what was occurring in the shadows into the light, legalisation has simply pushed the boundary of what is legal out further and may have increased the amount of activity that occurs beyond the sight of regulators.”

Even tempered and thorough, Mulino concludes:

"The Majority Report asserts that the evidence is “clear” that safeguards work in jurisdictions with legalised euthanasia and assisted suicide. A balanced reading of the evidence would lead one to conclude that such an unequivocal statement is not true."

The Majority Report in its conclusions and recommendations on assisted suicide, have presented the Parliament and the people of Victoria with a sugar-coated poison pill. We hope that the government of the day will see through this charade and act at all times to protect vulnerable people while prioritizing palliative care.

Not Dead Yet Activists protest Me Before You in Philadelphia.

The Philadelphia Metro news published an excellent report on the Not Dead Yet protest of the movie Me Before You. The Metro wrote (this article was edited for length):

A new Hollywood film depicting a romance between a quadriplegic and his caretaker that ends in the man choosing suicide over life in a wheelchair is being denounced by the disabled community. 

Two dozen activists with disabilities and their supporters protested outside a South Philadelphia movie theater Monday against the film "Me Before You," calling it "poisonous" and saying it could encourage suicide among people with disabilities. 

“As of Saturday, June 4, I have lived with a spinal cord injury for 15 years,” said activist German Parodi, 32, who uses a wheelchair and became disabled after he was shot in the throat during a carjacking. “There’s no reason for us to kill ourselves.” 

The activists in Philly sang and chanted for more than an hour outside the UA Riverview 17, one of two theaters in the city that is showing the film. They were affiliated with Not Dead Yet, a disability rights group that is organizing protests nationwide and protested the film’s red-carpet premiere in Hollywood. 

For those participating in the protest, the story of the film is a painful parallel to their own experiences. 

“I’ve struggled with depression and suicidal thoughts,” said Anomie Fatale, 28, a musician and performer who became disabled at 20 due to Ehlers-Danlos syndrome. “Putting that out there in the mainstream is dangerous. … It could kill someone.” 

Fatale said she has quadriparesis, severe muscle weakness affecting all four limbs. 

“You are suggesting, romanticizing, glorifying, encouraging suicide. That is a thing I can’t be okay with,” Fatale said. “I’m worried about young, impressionable teenagers. I want to put the right message out there.” 

Director Thea Sharrock recently defended the film against the criticisms of ableism, telling The Hollywood Reporter, “I didn’t quite anticipate this” and that the criticisms arose from “a fundamental misunderstanding of what the message is.”

Activists said the film barely portrays any characters who disagree with the protagonist’s decision to end his life in Switzerland at ..., a real assisted suicide organization. 

“There is product placement for an assisted suicide organization in this film,” said Clark Matthews, 34, a filmmaker who uses a wheelchair. “Can you name the last romantic film with a disabled protagonist? The first one in decades, and of course he kills himself.” 

There is also no depiction in the film of the community of people with disabilities, which activists credited with helping them live their own lives. 

“In the past five years, I started meeting other people with disabilities. I stopped feeling ashamed. These people made me feel like I’m not a burden,” said Liam Dougherty, 26, who uses a wheelchair due to Friedreich's ataxia, a progressive neural disorder. 

“It’s a road I could have gone down,” Dougherty said of the story depicted in the film. “I’m so glad I have a supportive organization that made me realize I shouldn’t have gone down that path.”

Congratulations to the NDY activists in Philadelphia who effectively got their message out.

People with disabilities comment on Me Before You.

By Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

Me Before You has become one of the controversial films of the decade, with protests, boycotts and many articles about the film. Not Dead Yet organized protests outside movie theaters, EPC asked its supporters to boycott the film in order to not give the makers of this movie our hard earned cash, nonetheless, the clearest voices have been disability leaders.

John Kelly

John Kelly, the New England Regional Director for Not Dead Yet, who has read the book, was reported by the New Boston Post as saying:

“After a new injury, people are very vulnerable, because suddenly you become part of a marginalized group,” And in terms of the film, “Only a disabled character could have their suicide presented as noble. Imagine if another character in the movie had killed themselves based on their own internalized depression.” 

“People happily cry over people like me killing ourselves,” 

“Where are the films where he changes his mind and they live happily ever after?”

Dominick Evans

Dominick Evans, was interviewed by Montgomery Jones for Film Obsession. Evans is a movie director and critic. Evans stated:

The disability community is really worried about what this is going to say to a newly disabled person. No one is disputing how vulnerable it can be to go from being able to move physically and suddenly being disabled. It is a huge transition, and that is why a lot of rehabilitation centers look for anxiety and depression, because those things need to be treated. If a person is non-disabled and they are suicidal, we do everything in our power to give them a reason to want to live. Why are we not seeing the same level of care and concern for disabled people? Why is it just accepted without question that disabled people should be allowed to kill themselves, and why is there this default belief that disability = suffering? We deserve just as much right to suicide prevention as any other person. 

When I was 19 years old because of years of systemic abuse and oppression which I endured from my family, my school, and my community as a disabled person, and as an LGBT person, I tried to kill myself. I am so grateful today that I did not make it through the process. I hear this over and over from my disabled friends who have tried to kill themselves. Many of us become depressed because of how we are treated by society, especially when it is our families, and other loved ones. That depression needs to be treated, and disabled people are not receiving that kind of care.

The comments by Ella Frech, really hit home. Frech, who will soon be 12-years-old and is a wheel chair athlete, wrote an article for Aleteia.org:

Well, what’s wrong with a life that looks like mine? 

My mom says this isn’t the first movie where a handicapped person had to die for being paralyzed. There was one called Million Dollar Baby where a woman is a quad and bravely chooses death instead of an imperfect life. 

So I’m asking you again, what’s wrong with my life? Why do you think I should want to die? 

You sit there with your able bodies, and look at people in chairs and think you feel pity for our sad little lives, but the truth is you’re afraid. You don’t want to imagine that you might be one of us one day. You think you can be perfect, and think you’d rather die than have parts that don’t work right. I think that’s sad.

Crippled Scholar has published a list of commentaries by the disability community concerning Me Before You.

Legalizing euthanasia and assisted suicide creates a cultural paradigm - whereby some people are deemed worthy of life and others are deemed unworthy.

Kevin Yuill: Me Before You is fiction, but so are most arguments for assisted suicide.

Alex Schadenberg
International Chair - Euthanasia Prevention Coalition

Kevin Yuill

Kevin Yuill, a history professor at Sunderland University, wrote an excellent article that was published in the Telegraph today. Yuill's argues that Me Before You is simply one of many fictional stories about assisted suicide, but then he also states that arguments supporting assisted suicide are also fictionally based. Yuill writes:

There is an outbreak of fictional assisted suicides, of which the film released this week, Me Before You, is simply the most recent example. Before, we had Million Dollar Baby, The Sea Inside, One True Thing, and episodes of Lena Dunham’s Girls, Coronation Street, and Hollyoaks. Such a plot-device is neither new nor "taboo-busting" – that taboo has been well and truly busted. 

It is interesting that the case for assisted suicide exists more in the fevered imagination of authors and screenwriters than in reality. Only a handful of Britons kill themselves in Swiss assisted suicide clinics every year; the rate of fictional representations to people actually killing themselves in Switzerland must be nearly 1:1. But Me Before You has sparked protests, mostly from disabled groups, because it implicitly asks the question: If you were quadriplegic (or severely disabled), would/should you kill yourself? 

Of course, the film is fiction and not particularly imaginative fiction at that, but there is a real context to the unease of groups of disabled activists like Not Dead Yet who have protested outside cinemas.

Yuill outlines some of the information from his book: Assisted Suicide: The Liberal, Humanist Case Against Legalization (2015) 

The whole case for assisted suicide is fictional. Rather than empathy, it is based on anxiety in the worried well. “I’d rather die than suffer like you do”, some actually say out loud to disabled people, who, in my experience are a feisty lot who enjoy (and all too often must fight for) their lives. There are real disabled lives – and there is the narcissistic projection of gloomy imaginings onto the disabled. 

Stephanie Gray: You Before Me is Better than Me Before You.

The Euthanasia Prevention Coalition has urged its supporters to boycott Me Before You.

The disability rights group, Not Dead Yet has urged people to protest Me Before You.

S

Stephanie Gray

tephanie Gray wrote an excellent blog article on the book that the movie - Me Before You is based upon. She begins her article by stating that a friend texted her urging her to read the book Me Before You. Her friend said it will make you raaaaage. This what Stephanie wrote:

So on the weekend, as it poured rain, I curled up and got caught up in the world of the main characters Louisa Clark and Will Traynor. So would I recommend it? Absolutely not. It’s dangerous—very dangerous. Setting aside the obvious problems of blasphemous language and sexual references, the storyline supports assisted suicide—but it does so in a sneaky way, making it all the more dangerous.

Initially Louisa, hired to be a companion and helper to wheelchair-bound Will, was my hero. She was from a family that, while it had its own dysfunctions, overall lived a self-less philosophy:

· Louisa worked so as to help provide for her poverty-stricken family. You before me. 

· Her parents welcomed her sister home when faced with an unplanned pregnancy, and helped care for their grandson. You before me. 

· Her mom quit work to care for the family’s ailing grandfather. You before me.

But the world of you before me was about to collide with another world—the ugly world of me before you. The Traynor family had it all—by the world’s standards: unlimited wealth and the ability to go wherever and do whatever. But they were all miserable because they lacked love:

· Mr. Traynor was having an affair (not his first). Me before you. 

· When Will’s sister Georgina visits and learns of his plan to have assisted suicide in 6 months she gets angry that he would do it, but instead of using the 6 months to give him the gift of time, attention, and love, to try to convince him he’s valuable and should stay alive, she returns to Australia saying, “…this was just a visit…It’s a really good job…the one I’ve been working toward for the past two years…I can’t put my whole life on hold just because of Will’s mental state.” Me before you. 

· Will himself, pre-accident, lead a life of self-indulgence. Me before you.

So why was Louisa my hero initially? When she learns that the parents have agreed to assist Will in his suicide in 6 months’ time, she quits because she doesn’t want to be part of killing. Louisa, you’re my hero. Then she decides to return to work, realizing she can spend the next few months trying to make Will’s life as incredible as possible so he doesn’t choose suicide. Louisa, you’re my hero. Then she takes Will on a life-creating and spirit-building vacation and tells him she wants to devote her life to loving and serving him, but he refuses saying he still plans to commit suicide, so she cuts him off in a decision to remove herself from the killing. Louisa, you’re my hero.

But then it all goes downhill. And I understood why my friend said “It’s going to make you raaaaaaaage.” Almost every single character caves. Mr. and Mrs. Traynor, Georgina, Mr. Clark, Louisa’s sister. And Louisa herself. They all cave. They all encourage, facilitate or are actually present at Will’s suicide the way he wants it.

And a morally un-formed reader will think, “Maybe it’s not so bad after all. Maybe, by being present, that was the loving thing to do.” No, no it’s not. Would they have been present if Will was killing a child? Then why would they be present when Will killed himself? His life is just as unrepeatable, and just as irreplaceable, as a child’s. Life, whether our own or someone else’s, is not ours to take. Moreover, Will couldn’t have gotten to the suicide clinic without their help. So his act of suicide actually turned into their act of homicide. Had they refused to “help” him, especially when, as a result of Louisa’s involvement in his life, he admitted those were the best 6 months of his entire life, Will may have gone on to thrive in a world of human connection and a world of you before me. But we will never know. Because he’s dead. And they helped kill him.

Will was obsessed with control, and argued he needed to end his life because it was the one thing he could control. But he could control more than death—he could control his perspective. Holocaust survivor Dr. Viktor Frankl wrote in his book, “Man’s Search for Meaning,” that “everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances…”

When someone is despairing so much that they can’t see they can choose their attitude, it’s the job of people who care to help them see this, not to feed into despair. As one palliative care website says for why they don’t allow or encourage assisted suicide, “In our experience, the issue of physician-assisted suicide often arises as a response to a complex set of problems which we help people sort through and address.” If only Louisa et al had helped Will sort through and address his problems.

So when the movie is released this Friday, and unsuspecting movie-goers who’ve seen the trailer may have no clue it’s actually about assisted suicide, please boycott the film and encourage others to do the same. And when someone asks why, you could begin by explaining, “You before me is better than me before you…”

Boycott - Me Before You - "disability death porn."

Alex Schadenberg
Executive Director - Euthanasia Prevention Coalition

The movie - Me Before You will be released in theatres across North America on June 3.

The Euthanasia Prevention Coalition is urging its supporters to boycott Me Before You to not give any money to the production of movies that perpetuate the ideology that death is better than living with a disability.

We also urge our supporters to donate the admission price to either: Not Dead Yet (donation), Not Dead Yet UK (donation), Toujours Vivant - Not Dead Yet (donate through the Council of Canadians with Disabilities) or the Euthanasia Prevention Coalition (donation).

This is not a campaign to obstruct free speech, this is a campaign to oppose the "disability death porn" that this movie promotes.

In the Me Before You plot (Will Traynor) a man who was paralysed in an accident, decides to die by assisted suicide at a Swiss suicide clinic. His family, who are incredibly wealthy, hire Louisa Clark, as his care-giver. 

As the story progresses, Clark falls in love with Traynor, but Traynor has decided that death is better than living with a disability. Traynor dies by assisted suicide in Switzerland and of course he loves Clark so much, that he leaves her an inheritance.

What is most insidious about the movie is that Traynor’s suicide is sold as an act of love. For me that borders on what I call “disability death porn.”

People with disabilities are fighting for social and attitudinal change. Me Before You perpetuates the idea, that death is better than living with a disability.

To understand the disability perspective, I urge you to read the comments by people with disabilities concerning Me Before You.

William Peace (center)

William Peace, a Syracuse University professor, known as Bad Cripple, wrote an excellent article: A Second Class Existence: Me Before You Gets It All Wrong. Peace writes:

The obliviousness here is nothing short of stunning even for a quadriplegic wants to die snuff film. The main character, Will Trayner, is never given a voice. He is a mere foil for Louisa Clark. In a New York Times review of the book the reviewer put it succinctly; 

"Lou has never fully lived: Will has, but no longer can... He had scaled rock faces at Yosemite, swum in volcanic springs in Iceland, sampled warm croissants in the Marais and had his pick of glamorous, leggy girlfriends. After the accident, he can't walk, can't feed himself, can't have sex. The only power he believes he retains is the power to end his life; and, as a man of action, he wants to exercise that power". 

This is a first. Will is the first asexual romantic hero who wields his power to die. It is a given, he will die because, well, that is what all people who are not quadriplegics believe. The only quadriplegics that want to live are asexual, bitter, angry people who lash out at all the people foolish enough to engage them. Even when a quadriplegic like Will has it all--he is rich beyond belief, lives a life of luxury and can do pretty much whatever he wants--still chooses to die. Out of the goodness of his soul he will not allow himself to ruin Louisa's life hence after his death he wills her his money. Only Hollywood could come up with such a story line that is so grossly convoluted and devoid of reality. 

Predictably, there are more than a few angry people with a disability who deeply object to the book and film. If the film is a hit, and I believe it will be, there is no doubt organizations such as Compassion and Choices will exploit its popularity to help pass assisted suicide legislation. Multiple people with a disability have already weighed in with scathing words. I doubt their words will resonate beyond the disability rights community but they reinforce I am not alone. Here are a few links: 

Sane Clifton: https://shaneclifton.com/2016/02/05/why-i-hate-jojo-moyes-me-before-you/ 

Dominick Evans: http://www.dominickevans.com/2016/02/hollywood-promotes-the-idea-it-is-better-to-be-dead-than-disabled/ 

Pretentious Best Friend: http://pretentiousbestfriend.blogspot.com/2016/05/me-before-you-fetishization-of.html 

Crippled Scholar: https://crippledscholar.wordpress.com/2016/05/21/why-are-you-complaining-some-people-actually-feel-that-way-a-critique-of-me-before-you/

The cultural promotion of suicide and assisted suicide was bad enough, now Me Before You and its disability death porn, defines death as an act of love for a person with a disability.

Hollywood Promotes The Idea It Is Better To Be Dead Than Disabled

This article was written by Dominic Evans and published on his blog on Feb 11, 2016.

Few films make me as upset as The Sea Inside. It has been years since the first time I saw the 2004 Alejandro Amenábar vehicle, which stars Javier Bardem, as a real-life disabled man named Ramón Sampedro, a Spanish man who believed it was better to be dead than disabled. Rather than portraying disability in a way that would open up dialogue about why disabled people feel that way, and addressing the greater issue of how society views disability, the film is a testament as to why non-disabled people should pity the disabled community, especially those who are as disabled as Ramón Sampedro, and support his decision to end his life, even if his disability was not fatal, which it was not.

We look to film and television for how to treat others, how to understand others, and to learn about stories about people we don’t actually know. The majority of non-disabled people do not know someone with a disability. This is in spite of disability be the world’s largest minority community with numbers between 1 billion worldwide. A lot of this is because disabled people have been kept away, out of public essentially sequestered to the back bedroom, until the early to mid-20th century, when disabled activists started fighting for their rights to go to school, find employment, and anything else non-disabled counterparts were doing. If not stuck in the back bedroom, others were performing in freak shows, the objects of pity and awe…never of understanding or relatability.

Around a century has passed, and society still doesn’t know how to deal with disabled people. Hollywood doesn’t know how to tell disabled stories, so it falls back upon tired tropes that often involve pity or awe. This trope is so common, many activists look out for it in any new forms of media that includes disability. Even as the world becomes more tolerant of other differences, the pity narrative for disabled characters continues. The Sea Inside came out over a decade ago, and yet we still have not evolved enough beyond the harmful message embedded in this film.

Even as disabled activists fight to prove that our lives are worth living, assisted suicide has been discussed, and even approved, in states like California. Such legislation puts disabled lives at risk, under the guise of letting terminally ill people die with dignity. Such films continue to uphold the narrative that disabled people deserve to be able to kill themselves, because being disabled is so awful. It doesn’t matter if the disabled person is dying. Suicide is still seen as a viable option, because people believe being disabled is a fate worse than death.

The latest film to take on the narrative that it is be better to be dead rather than disabled is a very disappointing film called Me Before You. It stars British television stars, Emilia Clarke and Jenna Coleman. Even more disappointing is the casting of The Hunger Games actor Sam Clafin, as a physically disabled man. The trailer is filled with ableism, and many harmful disability stereotypes. Additionally, not only is the non-disabled actor cast as a cripple, he’s the worst kind of crip. He is pathetic, pity-inducing, and absolutely inaccurate to most disabled people’s reality. He makes you want to pity him and support him dying, “because it’s the right thing to do.”

The film is based on a romance novel by British romance writer, Jojo Moyes. If it is anything like her novel, then *******SPOILERS AHEAD******* we are looking at a film that sees a man with a disability who in spite of finding love, still kills himself, because life is not worth living if you have to live it in a wheelchair. Of course, his disability is also a plot device for the true lead character, who actually benefits from the death. His disability and subsequent death because of it, allow her to go on living. She is able-bodied compared to him, so she is able to benefit because he leaves her the money she needs to have a successful life. His death benefits her, and solves all her problems, so even if she loved him, it is better for her that he died. You can see the trailer below:

The disability community is sick of seeing films where disabled people are misrepresented. Part of this is because we are not included, anywhere. We were not consulted for the script. A wheelchair user did not write the script. Even the main actor is an able-bodied actor, which prevents him from knowing how accurate his acting, how harmful his portrayal, and how inauthentic the script really are. Without including the disabled voice, non-disabled Hollywood continues to make life harder for us, because this is all people see, and they assume it’s true.

I believe that if Hollywood showed more disabled actors, particularly wheelchair users, who we never see, and the stories were more reflective of the disabled experience, then people would believe disabled lives were worth living. There is a huge difference between a debilitating illness, such as brain cancer, in the end stages, and a person with a disability who is not dying. You can find success, love, fulfillment even if you happen to use a wheelchair. It is not the end of the world, and these films need to stop scaring people into thinking it is. We cannot change the narrative about disability when these kinds of films continued to be made.

We cannot make better, accurate, disabled-inclusive films, so long as Hollywood is able to continue shutting us out. Often, performances in these kinds of movies are awarded by the institution, and disabled actors continue to struggle to find any type of meaningful work. If we are not even allowed to play disabled roles, who are we allowed to play? I only wish disabled perspectives were even considered, because until they are we will keep seeing films that continue to harm one of the most oppressed groups in the world. The disability community deserves better.

Dominick is a director/filmmaker, activist, writer, advocate, FTM transman from the Midwest who lives in New York. Follow his film career and join his weekly Twitter chat on film and disability by following #FilmDis. He received his BFA in Film Production in 2014.