APPLETON, Wis. — Disability rights organizations said the death of a Wisconsin teenager who was allowed to end treatment of her incurable disease was an injustice.
The Post-Crescent (http://post.cr/2drsMW4 ) reported that Jerika Bolen, 14, died Thursday at a Sheboygan Falls hospice center after drawing national attention for her decision to end a lifelong fight against spinal muscular atrophy type two. The disease left her mostly immobile and with severe, chronic pain.
Disability advocates questioned Jerika’s care, claiming that severe pain isn’t characteristic of the disease. New York advocate Dominick Evans said his questions came from personal experience. Evans has spinal muscular atrophy type 3 and said teens with disabilities easily lose a sense of their self-worth.
“Our society teaches us that disability is bad, that disability will kill you and that’s a horribly oppressing thing for a teenager to hear,” said Evans.
Evans was among those expressing concern for Jerika’s emotional state and whether she was influenced by others.
Not Dead Yet, a New York-based anti-euthanasia organization, issued a statement after Jerika’s death, criticizing the news coverage as “one-sided applause for her suicide.”
The group joined with Disabled Parents Rights, NMD United and the Autistic Self Advocacy Network to send a letter to the Wisconsin Department of Children and Families in early August to asked that they investigate Jerikas’s care.
Disability Rights Wisconsin sent a separate letter to Outagamie County child protection authorities.
The newspaper said both agencies declined to comment following Jerika’s death.
Jerika’s mother, Jen Bolen, defended her daughter’s decision and said they did all they could to maintain Jerika’s quality of life.
“My only words to anyone questioning this is that I love that girl with every cell in my being,” Bolen said, “and no one in their right mind would let someone suffer like she was.”
Jerika’s decision to end her life attracted widespread attention, including on social media. More than a 1,000 people attended a prom thrown in her honor in July at a ballroom in Appleton as a last wish.
Information from: Post-Crescent Media, http://www.postcrescent.com