the advocacy monitor

Independent Living News & Policy from the National Council on Independent Living

Medically Unnecessary Growth Attenuation and the Right to Bodily Integrity

Approved by the NCIL membership July, 2007

WHEREAS, the Washington state case of Ashley X, the parents of a severely disabled child decided to limit her growth through the use of estrogen therapy, in conjunction with a hysterectomy and breast bud removal, in order to keep her small and sexually immature; and

WHEREAS, the child in question is unable to communicate her preferences on her own behalf due to her disability; and 

WHEREAS, a hospital ethics committee approved the so-called “Ashley Treatment” in disregard of her civil and constitutional rights; and

WHEREAS, American hospital ethics committees lack disability representation, membership qualifications, or performance standards, and demonstrate the research proven tendency to underestimate the quality of life of people with disabilities, as well as the institutional bias of the medical-industrial complex; and

WHEREAS, the American College of Obstetrics and Gynecology specifically opposes medically unnecessary sterilization of those who cannot speak for themselves; and

WHEREAS, the United Nations Convention on the Rights of Persons with Disabilities affirms the right of all people to bodily integrity;

BE IT THEREFORE RESOLVED:  that the National Council on Independent Living opposes the use of medically unnecessary growth attenuation procedures on people with disabilities without their informed direct consent and regardless of age.

BE IT FURTHER RESOLVED:  that the National Council on Independent Living recognizes the right of all people to bodily integrity.

Submitted by:  Amber Smock, Access Living, Chicago