Disability Activists Want to Stop Jerika Bolen, Teen With Rare Disease, From Ending Her Life

Back in July, 14-year-old Jerika Bolen made headlines for deciding to enter hospice care this September, and forgo using her ventilator – a measure that will ultimately end her life. Bolen, from Wisconsin, was born with spinal muscular atrophy (SMA) type two, a rare disease that causes muscle weakness, trouble breathing and feeding difficulties. With medical interventions, the disease is not fatal, although it is life-threatening.

Now, disability rights advocates are trying to convince the teen, her family and child protective services that Bolan should not be allowed to die. “A child doesn’t have the capacity to make those types of decisions, and under the eyes of the law, this is a child,” Carrie Ann Lucas, executive director of Disabled Parents Rights, told USA Today.

Disability advocates have been trying to dissuade Bolan and her family since her decision went public in July. Others with disabilities have been sending letters to her via the Letters for Jerika campaign, which seeks to inform Bolan that a life with a disability is a life worth living.

In previous interviews, Bolan, whose movement is limited to her head and hands, said she lives in constant pain. The teen added that she is afraid of continuing her life in pain and any further medical interventions she may require.

In addition to asking child protective services to intervene, advocates are asking Bolan to seek counseling. “Any other teen wishing to die receives suicide prevention, not suicide assistance,” Disabled Parents Rights group shared on its Facebook page. “If child protection is not involved in Ms. Bolen’s situation, despite statute and caselaw that is clear that it is unlawful for children to terminate medical treatment, she is a victim of disability discrimination in addition to the medical neglect.”

On Tuesday, Bolan’s mother, Jen Bolan, asked for privacy and declined to comment any further about her daughter’s care.

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