[Thanks to John Kelly and Frankie Symonds for creating this video. Carrie is among those who received recognition from New Mobility for trying to save Jerika’s life.]
Last July, news broke that Appleton, Wisconsin 14-year-old Jerika Bolen had decided to die because of the extreme pain she was in, pain attributed to her genetic condition, spinal muscular atrophy (SMA) type II.
While the media celebrated her suicidality as “brave” and “inspirational” in the face of tragic, “wheelchair-bound” suffering, disability rights advocates with SMA and similar neurological conditions tried working behind the scenes to get Jerika the pain relief and mental health attention any suicidal teenager deserves.
Community and national attention helped the family raise $36,000 for a pre-suicide prom specifically for Jerika, who was crowned prom Queen.
Her pediatric palliative care specialist, Dr Kari Stampfli, violated a tenet of palliation (there are always new treatments to try) by publicly giving up on her .
On August 4, Not Dead Yet joined Disabled Parents Rights, the Autistic Self Advocacy Network and NMD United in sending a letter to the Wisconsin Department of Children and Families asking it to intervene in the case. The Wisconsin protection and advocacy organization Disability Rights Wisconsin sent a similar letter.
The letter questioned the quality of her medical care, evidenced by the 30-38 surgeries she had reportedly had, her extreme pain and improper pain management – pain does not typically accompany SMA. The groups wrote that the approval that greeted Jerika’s decision to die was based on Jerika’s use of a wheelchair and part time breathing assistance. Any other suicidal teenager would receive suicide prevention services.
Our intervention on behalf of a teenager’s right to effective pain management and mental health services was attacked in the press.
Jerika entered hospice as planned in early December, dying 18 days later, most likely by sedation coupled with starvation and dehydration.
We mourned her death, writing:
Our grief at the tragedy of her loss is exponentially magnified by the certainty that the story told in the press will inspire others with disabilities and their parents to repeat this tragedy.
Those of us with disabilities dream of equality and justice. Jerika Bolen deserved better quality health care and the same suicide prevention that a non-disabled teen would receive. We ask one last question: What might have happened if Jerika’s request for a “last dance” had been met with overwhelming public and media encouragement to live instead of a massive thumb on the scale in support of her death?
Carrie Ann mounts a comprehensive case on behalf of Jerika’s right to suicide prevention services and to quality medical care.
People with spinal muscular atrophy type II live into late adulthood. Some people live into their sixties and seventies and beyond, but most people live into at least late adulthood. So this is not something where she was imminently dying. This was not a child who was facing death.
Adults have the right to self-determination. The issue is, we don’t let other children die by suicide, any other child that did not have a disability. But, because of her disability, she was allowed to enter hospice to cause her death. We would not allow that to happen to any other child. But we should not be saying it’s okay for a disabled teenager to die, just because people who don’t have disabilities imagine what a poor quality of life she must have. Because they can’t imagine in their own heads what it would be like to live with a disability, even when in fact those of us living with a disability, those of us with the same disability, are telling you something very different. We are the experts in this, not an uninformed and biased public. There was something else going on in Jerika’s situation, but no one gave her the suicide prevention and other support she needed, and she’s gone.
We hope that people will listen to the disability community, and stop this tragedy from being repeated.