At 10:30 a.m. on Sept. 22, 2016 Jerika Bolen died.
As detailed in an earlier New Mobility article, Jerika Bolen was a 14-year-old girl with spinal muscular atrophy type 2 who decided — with her mother’s blessing — to end her life due to what she said was intolerable pain that she believed would only get worse as she got older. She received mainstream media attention this July while raising money for what was called “Jerika’s Last Dance” — a blowout prom she requested as her last hurrah.
“At 10:30 this morning, my beautiful angel was welcomed by her Father into the Heavens above amongst her many SMA friends and family. My heart will hurt forever but her pain is gone and I couldn’t be more comforted imagining the welcoming party above. I owe more thank yous than I can think of now, but please keep us wrapped in your prayers in the difficult days ahead. Jerika, until I can see you rollin’ your eyes at me again … I LOVE YOU MORE!!!” read a statement on her mother Jen’s Facebook page.
“We lost another child to systemic ableism, the medical model, and suicide today. Rest in peace, Jerika Bolen,” wrote Emily Wolinsky who also has SMA type 2 and is the founder and executive director of NMD United, one of five disability rights groups that sent a joint-letter to the Wisconsin Department of Children and Families asking for intervention on Jerika’s behalf.
Disability Groups Hoped for an Investigation
“Wisconsin law is clear that unless a child is in a persistent vegetative state, parents do not have the ability to withdraw care and neither do children have the legal capacity to make those decisions for themselves. Therefore, we believe the plans she’s discussed in the media are a violation of Wisconsin law and we believe that children, regardless of the severity of their disability, are entitled to equal protection under the law,” says Carrie Ann Lucas, the founder and executive director of the Colorado-based Disabled Parents Rights, one of the organizations that requested the investigation. The others listed were Not Dead Yet, Autistic Self-advocacy Network, and Disability Rights Wisconsin.
These organizations also hoped for investigation into whether Jerika received competent medical care, proper pain management advice for her circumstances and proper support for her emotional and mental health.
“Jerika herself had said to the media that she didn’t take pain medication unless her pain gets to a seven or an eight, but anyone receiving proper pain management advice knows that you take medication at a lower level, so the pain doesn’t reach a point of being unmanageable,” said Lucas who has mitochondrial myopathy and a daughter who deals with chronic pain.
“We are concerned that her family received improper information in providing her good care and our other concern is the statements Jerika had made that indicate she had some troubling thought processes.”
Jerika and her family remained publicly silent since her “Last Dance” at the end of July, but in one of her last statements to the media she expressed the following:
“In your life you need to like yourself … because for a while, probably up until I decided
As a result, Lucas expressed concern about her level of self-esteem and pointed out that an adolescent’s under-developed brain means they don’t get to decide to vote, they don’t get to sign up for military service, they don’t get to use drugs and alcohol and they don’t get to make their own medical decisions.
“She is making decisions that are outside the law and don’t really reflect an exceptional amount of maturity for a 14-year-old. She sounds like a 14-year-old and I say that having taught teenagers for a lot of years and having parented four kids through adolescence,” said Lucas prior to Jerika’s death.
Local Newspaper Said, ‘Butt Out’
Still, there are others who believe that Lucas and the other organizations that have joined hers in solidarity stuck their noses where they didn’t belong. In an editorial titled, “Groups Inappropriately Co-opt Jerika’s Case” Jerika’s hometown newspaper The Post-Crescent News of Appleton, Wisconsin did not mince words in how they feel about the requested investigation into Jerika’s story:
“Make no mistake about it: The disability rights groups that saw our coverage of Jen and Jerika Bolen have twisted the story into a way to further their causes. Jerika did not ask for this, and Jen does not deserve to have accusations lobbed at her by outsiders for doing nothing more than being a supportive mother. They have already been through hell because of spinal muscular atrophy type 2.”
But it was their coverage of this story and the coverage from other mainstream media outlets that these disability groups say contributed to the societal acceptance that a child with a disability was making the decision to end their life.
“The coverage endangers many, many people — not just Jerika Bolen, says Samantha Crane, legal director and director of public policy at the Autistic Self-advocacy Network.
“When people promote the idea that a disability like SMA is inevitably fatal, is completely intolerable and makes someone’s life not worth living, it makes people less likely to provide medical care to their own children with SMA, it can also convince doctors to counsel people not to pursue aggressive treatment of other life-threatening episodes and that’s what we’re really worried about.”
Crane and her organization got involved in Jerika’s case because they’ve seen similar scenarios before. In 2009 University of Wisconsin doctors were sued for withholding medical care from two people with developmental disabilities, including a 13-year-old boy with autism, who lawyers said would have recovered from pneumonia, but the courts ruled in the doctor’s favor.
Such precedent in Jerika’s home state may not bode well for the pursuit of an investigation into the circumstances of her death. At the same time, there’s every possibility Jen Bolen will be held criminally responsible for the death of her daughter given Wisconsin law.
“Parents can’t withhold treatment. She has a doctor who has been interviewed and I have seen both video and print interviews that have stated the plan was to put her in hospice, stop her BiPAP and administer morphine, which is criminal sedation and for a child is euthanasia,” says Lucas.