2016 People of the Year: The Resisters

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resisters-me-before-you-5Art by Mark Weber

Activists with Disabilities Fight Back Against the Forces of ‘Better Dead than Disabled’

From the movie Me Before You to the untimely deaths of 5-year-old Julianna Snow and 14-year-old Jerika Bolen, our society’s message of “Better Dead than Disabled” is as insidious as ever. Those disabled activists who resist this message are often met with scorn, even death threats, yet they stay strong in their fight to defend the lives that are so often devalued by others. This year, we are breaking from our tradition of naming one Person of the Year to instead honor the activists who we are collectively calling The Resisters: Carrie Ann Lucas, TK Small, Emily Wolinsky, Diane Coleman, Dominick Evans, Tari Hartman Squire, Ellen Stohl and so many more. Lead on!

It started with Me Before You. Sam Claflin, the star of this past summer’s blockbuster hit, Me Before You, hosted a Twitter chat on May 23 for his fans so they could #AskSam questions about his new movie. As most know by now, Sam played Will Traynor, a wealthy, good-looking quad who found love and then killed himself because he didn’t want to live as a disabled man any longer.

“I hope that your character doesn’t make me cry in the movie,” Tweeted Clara Salvatore, echoing many fans. “I cried when I read the book.”

Then Tweets came asking, “what’s your favorite quote?” and “what’s your favorite scene,” and of course, the ubiquitous “how did playing Will make you feel?”

Then the mood started to shift as people with spinal cord injuries and other disabilities showed up:

#MeBeforeYou thanks for setting #Disability Rights back by 30 years,” — Leena Hague

I have #MeBeforeYou Will’s disability. Stop killing me on film! #liveboldly, fight cripple snuff films. — John Kelly

#MeBeforeAbleism because no child should EVER have to hear “I would rather kill myself than have a disability.” — Ayanna Justine

dominick-evans2Dominick Evans
Web Warrior

A filmmaker, Evans orchestrated much of the disruption of Me Before You’s public relations campaign, especially the #AskSam Twitter chat. Evans led the #LiveOn project, encouraging people with disabilities to not commit suicide, producing this PSA modelled on the It Gets Better campaign: youtu.be/PLPAzs0A5-Q.

It was as if a disability rights Bat Signal went up somewhere, calling all those with disabilities resisting the “better dead than disabled” message that is so ingrained in our culture to come on out and fight back.

In a way, that’s exactly what happened.

“We found out about the #AskSam chat the night before it took place, and only had hours to try to recruit as many people with disabilities as possible to take part,” says media advocate Dominick Evans, who has spinal muscular atrophy and lives in Wallbridge, Ohio. “Activists in the United Kingdom were also protesting the film — it was written by a British author with a British cast. We combined our efforts and I think this was the first time we had an international community of people with disabilities activating on Twitter together on an issue.”

The advocacy efforts were so strong that soon messages of resistance popped up on television, traditional newspapers, online news sites, and poured out into the streets as British activists protested the movie’s May 25 posh premiere in London. “This film is offensive to disabled people, the vast majority of whom want to live — not die,” said British actor Liz Carr, a wheelchair user well-known for her role on the UK’s Silent Witness.

tari-hartman-squire2Tari Hartman Squire
Media Maven

A longtime media advocate, Squire prefers to work in the background where she connected advocates to reporters. As a resister to the “better off dead than disabled” forces, Squire connected activists to reporters writing about Me Before You and Jerika Bolen. Her latest endeavor is DisBeat, which you can learn more about at www.adalegacy.com/disbeat/Initiative.

Many cities across Britain, the United States and as far away as Australia saw disabled activists leafleting the movie, from big cities like New York to small ones like Harrisburg, Pennsylvania. Collectively the protests were so successful that Forbes published an article on May 31 with the title, “Will Protests Against Me Before You’s Disability Representation Affect Opening Weekend Profits?”

There are not many movies about, or even featuring, wheelchair users, and a high percentage of the ones that do exist end with the death of the disabled person — think Million Dollar Baby. This doesn’t match reality, in which most people with spinal cord injuries or other mobility impairments live well with their disabilities. The unbalanced view in the media about how disability is experienced can have real-life consequences, warn the resisters.
That’s why they fight so hard.

Sending up the ‘Resistance Signal’

Resistances don’t just happen. They have to be built, nurtured.

Media guru Tari Hartman Squire knows this very well, having been part of the disability rights movement since the ’70s. Squire has successfully helped disabled actors be cast on screens big and small, and she’s coached organizers on how to frame their issues in ways that mainstream media will pick up and repeat.

emily-wolinsky2Emily Wolinsky
Protector of Innocents

Founder and executive director of NMD United, which is an organization of people with neuromuscular disabilities who support each other, Wolinsky created the Dear Julianna campaign to try to give hope to a 5 year old with NMD who chose to “go to heaven” rather than the hospital. Wolinsky and NMD United, along with other groups, attempted to have Wisconsin intervene to save Jerika Bolen’s life.

British activist Liz Carr crashes the posh London premiere of Me Before You. PA Images / Alamy Stock Photo

British activist Liz Carr crashes the posh London premiere of Me Before You. PA Images / Alamy Stock Photo

These days Squire is active with DisBeat, a national communications initiative to provide the media with accurate information about disability issues. The group didn’t seem to be having much success in early 2016.

“In the context of this year, we were hit with the State of the Union not even mentioning disability, and then #OscarSoWhite — again, no mention of disability — and we circled the troops after that,” says Squire. “And by the summer it became clear that disability being ignored in the media was a pattern. So when Dominick Evans and Diane Coleman made DisBeat aware of Me Before You, we thought, yeah, this could be an organizing opportunity.” Coleman is executive director of the anti-euthanasia group Not Dead Yet.

Those protests that erupted? “Not Dead Yet took the lead and we were the vessel linking press to different activists,” says Squire. “Diane Coleman and John Kelly and Dominick Evans and Carrie Ann Lucas came up with such great marketing materials that were so crisp and right on.” These included banners declaring “Me Before Euthanasia” that were made available to activists, as well as some original tactics. “Samantha Connor in Australia along with our intern came up with bookmarks so people who didn’t feel comfortable leafleting could go in a bookstore, put the bookmark in the Me Before You books and slip away. Then people who bought the book would find it, and learn about Not Dead Yet. It was great guerilla marketing. Because it was so beautifully executed, the mainstream press started paying attention.”

tk-small2 TK Small
Social Media Avenger

A board member of NMD United and moderator of Living with Muscular Dystrophy, Small fought across platforms and groups to get nondisabled people, especially parents of kids with NMD, to understand life with a severe disability is not worse than death — specifically, Jerika Bolen’s life. For his efforts, he was kicked out of an SMA support group run by parents.

That headline about disability protests possibly affecting the movie’s bottom line? “That never happened before,” says Squire, who credits activists Mark Johnson, Stephanie Hydal, Lawrence Carter-Long and NEW MOBILITY contributing editor Ellen Stohl for explaining to reporters the effect movies like Me Before You have on the lives of real people.

In Buzzfeed’s June 9 article, “The ‘Me Before You’ Backlash Was Bigger Than Anyone Expected,” Stohl, a C8-T1 quad who teaches at California State University, Northbridge, talks about how she wanted to die after her injury.

“I thought my life was over,” said Stohl, a teenager at the time of her injury. “I was still a virgin, [I thought] I was never gonna have sex, I could never be an actress, I could never have a husband, a career, a life. I really did believe that when I woke up” [after the accident]. She attempted to refuse a life-saving blood transfusion while she was in the hospital. During a Me Before You protest in 2016, sitting several yards away from her 12-year-old daughter, she related this same story to two people who stopped to listen. “Thank God,” Stohl said, raising her hands for air quotes, “my mom didn’t ‘respect my choice.’”

What made Stohl’s statement, and all of the Me Before You advocacy, so successful was that activists told simple truths about their own lives, coupled with protests and skillful utilization of social media.

It seemed as if the message of “better dead than disabled” was finally being corrected to “our lives are worth living.”

carrie-ann-lucas2 Carrie Ann Lucas
Defender of Human Rights

Child welfare specialist Carrie Ann Lucas is fiercely committed to the rights of all people with disabilities, of any age, to live their lives as fully as possible. A board member of Not Dead Yet, she drafted the letter signed onto by her own Disabled Parents Rights, NMD United, Not Dead Yet and the Autistic Self-Advocacy Network. She gave national television and newspaper interviews in an attempt to save Jerika Bolen’s life.

A Real Life ‘Me Before You’ Story

While advocates were making headway resisting the death-affirming message of Me Before You, a 14-year old girl with quadriplegia from spinal muscular atrophy decided she no longer wished to live.

On June 3, Jerika Bolen’s mom, Jen, created a GoFundMe page called J’s Last Dance to raise money to throw her teenaged daughter a prom, since if all went as planned, her daughter would enter hospice with the intent of dying at the end of the summer. Here’s part of what Jen wrote:

“She has let me know now that she needs to be free of her broken body. She has a couple last wishes that I would love your help with. She wants a to have a ‘prom’ … one night of music and dancing and fun. She wants a disco ball and black and lime green decor and to be surrounded by lots of friends she has been unable to see for a long time. … After that she will come home and begin her journey to Heaven.”

The GoFundMe goal was $25,000 but raised $36,482, and Jerika got her prom on July 24. Then, true to her word, she entered hospice either near the end of August or the beginning of September and died on Sept. 22.

NEW MOBILITY first became aware of Jerika in July, after her story was picked up by USA Today subsidiary Post-Crescent, which serves the Bolen’s hometown of Appleton, Wisconsin. That story was picked up by national outlets who collectively presented the situation as if Jerika was terminally ill (she was not), in excruciating pain (possibly, but if so, others with similar disabilities wonder why palliative care failed her), and — the kicker, for many nondisabled people — dependent on a ventilator (it was a bipap machine that she used at night).

diane-coleman-protest2 Diane Coleman
Mother of the Resistance

As president and CEO of Not Dead Yet, Coleman has been on the front lines of the fight against “better dead than disabled” for decades. She is a versatile fighter against euthanasia and assisted suicide, having co-written briefs filed in the Supreme Court, testified to Congressional committees, appeared on all major television networks, and also picketing movies like Me Before You. Coleman provided support and advice to all of the resisters featured in this story on everything from crafting messages to planning and implementing strategies.

Even after her death, The Washington Post published an obit with this misleading headline: “Terminally ill 14-year-old fills final summer with friends and a ‘last dance.’”

In retrospect, advocates never had a chance against the prevailing “tragic but brave, better dead than disabled” narrative that saturates our culture. But watching so many fierce adults with disabilities rise up to try to save Jerika’s life was like watching a pride of momma lions stride across a savannah.

But first came Julianna Snow’s death.

“Heaven Over Hospital: 5-year-old Julianna Snow dies on her own terms,” read the CNN headline about the child’s June 15 death. Like many stories about her, this one said she was “dying” of Charcot-Marie-Tooth, a type of neuromuscular disability. Snow wasn’t dying at all, but like many kids with neuromuscular dystrophy, had to be hospitalized from time to time.

CNN latched on to the melodrama and printed this from Snow’s mom Michelle Moon’s July 15, 2015 blog entry:

Michelle: Julianna, if you get sick again, do you want to go to the hospital again or stay home?

Julianna: Not the hospital.

Michelle: Even if that means that you will go to heaven if you stay home?

Julianna: Yes.

Prior to June 15, to try to save Snow’s life, Emily Wolinsky had created the DearJulianna campaign, in which adults with NMD wrote letters to Snow talking about their lives to show her and her mother that life with a disability could be rewarding. As a result, “I was vilified by the media,” says Wolinsky. “Even CNN and People mag made me look like a terrible person for even suggesting Julianna could have had a long, fulfilling life.”

How Did She Die?

Diane Coleman, executive director of Not Dead Yet, a disability rights group that opposes euthanasia and assisted suicide, uses the same type of bipap that Jerika did. Having a disability that mimics SMA, she says she might die within six months of not using the machine, “but if I keep using it, who knows how long I’d have. I’m 63 now.” Coleman uses hers 20 hours a day; Jerika used hers for 12.

Giving up the bipap by itself would not have caused Jerika’s death within a month of entering hospice. How did she die, then?

“There are two ways that hospice has to impact the situation Jerika was in,” says Coleman. “One is that they can provide pain medications, increasing the dose to relieve pain and discomfort. That can mean a lot of things, and it could be increased far enough to suppress respiration further.” The second, and fastest, way is to dehydrate her to death.

A likely scenario was the hospice provided her with medications that caused her to sleep, and then her mother could decide, under Wisconsin law, to withhold fluids.

And that is likely how she died.

Wolinsky learned the hard way what happens when a person with a disability publicly resists society’s ingrained attitude that the untimely deaths of people like her are to be celebrated.

Which brings us back to Jerika.

She Made It Public, Not Us

“Because of my work with Dear Julianna, people associated me with these types of issues, so I got notified of Jerika and her mother’s plans by one of the women from our Facebook support group, Living with Muscular Dystrophy,” says Wolinsky. “She sent me to GoFundMe, saying it looked really weird. It looked kind of like a private family fundraiser to me. I wasn’t happy to read it, but I didn’t know this family, this story, so I said I’m not going to get involved.”

Then came the article in Post-Crescent and Jerika’s story made the news on Wolinsky’s local TV station, and that piece ended up going international. “It’s one thing when it’s between you and your family, but when it turned into a telethon I got upset.”

Wolinsky says Jerika’s situation was different than Julianna’s, since Jerika and her mom were connected to the SMA community. “She knew a lot of us. She knew that life could be better,” says Wolinsky. “Julianna was 5 years old and was kept from that knowledge.”

But a 14-year-old girl, also, is still a child. “The things she said — ‘All I do is come home, do homework, lie on the couch, what kind of life is that?’ — that’s totally what teenagers say. They showed her playing video games and I thought if this girl was in the pain she says she is in, she’d be in bed screaming,” says Wolinsky. “She wouldn’t be able to make a video, go to a prom. This is more of an emotional decision.”

Jerika told the press that she had more than 30 surgeries. Wolinsky polled her support group of over 100 people with NMD and they said on average they had one or two before they were 14.

Wolinsky’s fellow NMD United board member, TK Small, an attorney from Brooklyn who also has SMA, notes the divide between how many people with SMA viewed Jerika differently than many parents of kids with SMA. “There was one Facebook group called SMA Support Systems. When I started talking about Jerika there, things started heating up very quickly. That particular group is run by parents and I ended up getting kicked out. And there’s another group, the Gwendolyn Strong Foundation, whose motto is ‘never give up.’ If you Google that phrase you’ll find inspiration porn horseshit, but here they were, willing to give up, basically saying we have to support what the mother is doing here. And we were like, ‘your phrase is never give up! But that’s what she’s doing! Don’t you see the inconsistency?’”

But they couldn’t — or wouldn’t.

We Had Death Threats

NMD United conferred with Diane Coleman from Not Dead Yet on what they could do, and Coleman was already discussing the situation with Disabled Parents Rights’ child welfare expert Carrie Ann Lucas. Discussions were also happening on DisBeat, as Tari Hartman Squire and Danielle Sheypuk were trying to meet face-to-face with Jerika and her mother.

resisters-jerikaAnd remember, “there were several things happening in different areas,” says Lucas, a vent user with NMD and adoptive mom of several children with disabilities. The Me Before You protests were still taking place, and Dear Julianna letters were still coming in. “We were again being bombarded with the notion that we are better off dead than disabled, and the media was saying, ‘Of course! Look how disabled these people are. They might have to be suctioned!’ I have to be suctioned a few times day, but it’s not worth ending my life over. So a lot of that was hitting at once.”

Lucas makes the point that she has supported children who actually were dying to have their final wishes met, such as the kid dying of cancer who wanted to meet Taylor Swift and got to do it. “Jerika’s situation is different, because this child was not going to die. So the thought was to work behind the scenes to see if there’s something we could do [to stop it] before it got to the point where someone kills their child.”

Lucas drafted a letter on behalf of NDY, NMD United and Disabled Parents Rights that was sent to the Wisconsin Department of Children and Families pointing out that since Jerika’s condition was not fatal, the only way she’d die would be through euthanasia. It ends, “Ms. Bolen is clearly suicidal. This teenager deserves intervention, rather than assistance to end her life. If your department needs assistance locating doctors and specialists who are experts in treating spinal muscular atrophy, referrals are available.”

“We FedExed that letter on Aug. 4. We also made a call to the counties and I faxed it to the child protection hotline,” says Lucas. They don’t know what happened to the letter, but that’s not surprising since the case would be confidential.

“At the beginning of September I received a call from Post-Crescent reporter Jim Collar wanting info about the letter we sent, so I spoke to him about it, and then the letter went everywhere.”

The backlash was prompt and strong. The Post-Crescent published an editorial slamming the advocates for writing the letter. “We actually had death threats. My paralegal was instructed not to answer the phone for any nonlocal numbers that we did not know,” says Lucas. “Everything else went to voicemail because we were getting so many calls: How dare you interfere? Of course this child should be allowed to die. How dare you suggest she not be allowed to die!”

Lucas fears Jerika’s death will embolden other parents to do the same thing. “Ultimately the fact that this girl had the prom and positive media attention may cause other children and teens to pursue this,” she says. “We are on that slippery slope that NDY has been warning about for many years. When you say it’s acceptable to start ending people’s lives, that bright line becomes gray and wider, and now we have a wide beach with no lines at all.”

On one side of that beach is the force of history — from ancient times when crippled babes were left on rocks, to the 20th century when disabled Germans were exterminated in the Holocaust, to just a few years ago when Tim Bowers, 32, fell from a hunting stand and broke his neck at the C3-5 vertebrae. Upon being woken from his medical coma, he was given misinformation — You’ll never hold your son being perhaps the most cruel — until he agreed to be removed from life support. And little Julianna Snow, 5 years old, was asked to “choose” between going to the hospital or heaven.

Disabled people can’t even live happily ever after in the movies, as Me Before You shows.

Jerika never had a chance.

On the other side of the beach, backs against crashing waves, are the people with disabilities who have been able to resist society’s siren song that says to lie down and die. “Disabled people have been fighting for the right to exist since the beginning of history,” says Lucas. “We have to say no, we help people live, we don’t let them die.”

Resources
• Dear Julianna, www.facebook.com/dearjulianna2015/; dearjulianna.tumblr.com
• Disabled Parents Rights, 970/460-6765 or 720/363-1131; info@disabledparentsrights.org, www.disabledparentrights.org.
• DisBeat, www.adalegacy.com/disbeat/Initiative
• NMD United, www.nmdunited.org
• Not Dead Yet, 708/420-0539; notdeadyet.org
• United Spinal Resource Center, 800/962-9629, unitedspinal.org/ask-us

Stohl protests the film with her daughter (center).

Stohl protests the film with her daughter (center).

Why I Protested ‘Me Before You’

By Ellen Stohl
I was upset about this movie in particular because it really promoted the theme “better off dead than disabled” — not only that the person with a disability is better off, but everyone else in that person’s life as well. This common stereotype is very dangerous.

When I was injured at age 19 in 1982 I felt life was not worth living and that I’d be a burden on my family. I was lucky that my mom and my family fought against my desire to just die instead of leaving the choice to me or, God forbid, supporting my choice.

Even after the first few years, people with new injuries do not know what life will be like, and with the rampant negative preconceptions about life with a disability, it is easy to see why they think living with a disability is a life not worth living. We do not see enough role models in the real world, so society does not realize that life with a disability is a life worth living and can be full, meaningful, and have tremendous quality and joy.

This movie struck a chord because I look at my amazing daughter and know that if I did what the main character did, she would not be here today. I know the world would be less beautiful if she was not a part of it.

I thought I wanted to die after my injury, but that was because I could not see the possibilities. I was blinded by the negative stereotypes and preconceptions. The main character in Me Before You was also blinded by these false representations, but even when he was given the opportunity to see, he chose to close his mind and opt for death.

What a devastating message wrapped up in a heart-wrenching romantic film to make it easy for the public to swallow and believe.

By | 2017-01-13T20:41:10+00:00 January 1st, 2017|