Young people speak out on Ashley X
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Ashley, a now nine-year old girl, has a disability which reports say keeps her from sitting, walking, or speaking. Many different surgeries were performed on Ashley at the request of her parents. The surgeries were agreed to by the Seattles Children's Hospital and Regional Medical Centers medical ethics board. These surgeries and the hormone therapy that they call treatments, removed Ashleys uterus, ovaries and some breast tissue. Because of these surgeries and hormones, Ashley will never go through puberty and will stay the size of a child. It is explained that this would help her parents care for her at home.
It is a tragedy that Ashleys parents and the ethics board of the hospital felt that this was the only way for Ashley to live her life. We know as young people, some of us under parents guardianship, that it is incredibly important for parents to have the help they may need for their children to live in their own homes. Parents must be told about assistive technology and home-based care services. It is important for local communities and government to help create and pay for these services.
The medical community and families should not be able to decide what our lives are worth. Our lives and futures need to be valued. To change someones body forever, without their permission, goes against a persons rights. Because of this event, this right is now something we, as young people, will have to fight for. The disability community has creative ideas and experience to share about the ways people with disabilities can live their lives at home and in the community.
We are joining hundreds of advocates in speaking out against what has happened to Ashley and others in our community.
We, the people signing this statement, are young people with disabilities and youth-driven projects/organizations. We believe the following actions need to happen:
The American Medical Association [AMA] must publicly say they do not agree with the "Ashley Treatment" for other children.
The AMA should have on-going meetings with the disability community to discuss the issue.
The AMAs Council on Ethical and Judicial Affairs, which helps set rules for what is right and wrong for doctors to do, must require that a seat be reserved for an advocate who is a persona with a disability, on all medical ethics committees.
The AMAs Council on Ethical and Judicial Affairs must require that local, state, regional medical ethics committees participate in up-to-date disability awareness and resource trainings on an annual basis. These trainings must be from the social model of disability and must value people with disabilities. (See attachment.)
The Medicaid Community Attendant Services and Supports Act [MiCASSA] and other legislation to support people with disabilities living in the community must be passed by congress and fully funded.
Please see statements by others at:
Feminist Response In Disability Activism [FRIDA] at:
http://fridanow.blogspot.com/
Not Dead Yet at:
http://www.notdeadyet.org/
And a familys alternative statement at:
http://martintreatment.spaces.live.com/
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