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 Jerika Bolen, 14, who suffers from Type 2 Spinal Muscular Atrophy,
garnered widespread attention earlier this year by speaking openly
about plans to end her life. Her final wish of a prom dance drew
hundreds in her hometown of Appleton, Wisconsin.
Bolen told local media that due to her severe pain and the
degenerative nature of her disease, which has confined her to a
wheelchair, she would stop using the ventilator that aids her
breathing in September.
Bolen's mother, Jen, could not be reached to comment on Thursday,
but she told the Appleton Post Crescent in July she had reluctantly
accepted her daughter's decision to end her life.
"If she's at peace with it, I have to find a way to make peace with
it," she told the newspaper.
However, several disability rights groups have voiced concern,
arguing that Bolen's case should be treated as one of suicide
prevention because her disease is not terminal. They also question
the pain management care Bolen has received.
"This is a child protection issue," Carrie Ann Lucas, founder of
Colorado-based Disabled Parents Rights, told Reuters on Thursday.
Lucas reported Bolen's case last month to the Outagamie County
Children, Youth and Families Division. The office did not respond to
a request for comment.
In an August letter to Wisconsin's Department of Children and
Families signed by four disability rights groups, Lucas said severe
pain is not a reason to support suicide and advocated proper medical
and health care for Bolen.
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"Ms. Bolen is clearly suicidal. This teenager deserves intervention,
rather than assistance to end her life," the organizations said.
State officials could not confirm if the family is involved in an
investigation.
"The fact that she is severely disabled is not a reason to accept
her suicide. She deserves the same suicide prevention as of any
other teenager," Diane Coleman, president of Not Dead Yet, who
signed Lucas' letter, told Reuters.
A second complaint to Outagamie County was sent by Disability Rights
Wisconsin last month, according to Lisa Pugh, the group's public
policy director. She said Bolen is a minor and cannot decide to end
her own life.
(Reporting by Timothy Mclaughlin; Editing by Ben Klayman and Dan
Grebler)
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