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.
And 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.”
• Dear Julianna, www.facebook.com/dearjulianna2015/; dearjulianna.tumblr.com
• Disabled Parents Rights, 970/460-6765 or 720/363-1131; email@example.com, 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