Amber Smock, the Foundation's 2008 Founders' Award winner, is a disability rights advocate in Chicago.
Among her many roles, Smock (at left) is a youth organizer at Access Living, co-coordinator for Chicago ADAPT and co-founder of Feminist Response in Disability Activism (FRIDA). With her $25,000 award, Smock will continue to help build the feminist wing of the disability rights movement. Herself a Deaf woman, Smock advocates with ADAPT for the rights of Deaf and disabled people who are unnecessarily placed and retained in nursing homes and institutions. One of Smock’s biggest accomplishments is her organizing work with FRIDA’s 2007 campaign on Ashley X, a landmark case on disability ethics and reproductive justice. Ashley X, as she is known for anonym
ity’s sake, has a profound cognitive disability and lives with her parents, who had her undergo operations at age six—including a hysterectomy and removal of her breast buds—to keep her sexually and physically childlike. In so doing, Ashley's parents chose surgical intervention as an answer to the social problem of lack of community supports for people with severe disabilities. The Ashley X campaign
Ashley X's hysterectomy was performed illegally without a court order and the parents were not interested in hiring in-home supports. FRIDA, in coalition with other grassroots disability advocacy groups, responded to this medically unnecessary violation of Ashley's right to bodily integrity by taking nonviolent direct action at the American Medical Association (AMA) headquarters, home of the Archive of Pediatrics and Adolescent Medicine which published the original article on the case. On Jan. 11, 2007, FRIDA led a group of some 20 people with disabilities who attempted to enter the AMA building and seek a meeting with their leadership on the case and AMA disability ethics. However, they were prevented from doing so by building security, and police were called. The action generated international press via the Associated Press and provoked widespread discussion in the disability, parent advocate and medical professional communities.
The media pressure on the case, in conjunction with an action by ADAPT allies in Washington, D.C. at an AMA spouses meeting, compelled the AMA's CEO to meet with FRIDA and its allies. This meeting resulted in the first-ever official meeting between the AMA and disability rights activists (all of whom were women). Because the AMA was not prepared to take an official stand on the case, FRIDA waged a months-long campaign to improve AMA policy related to this issue. FRIDA finally saw a modicum of victory when, in fall 2007, the AMA officially supported the Community Choice Act, which would provide Medicaid recipients with the ability to receive in-home supports rather than being placed in nursing homes. The AMA has yet to endorse a statement opposing the set of treatments used in the Ashley X case, but advocates across the country are now paying much closer attention to cases of sterilization and bodily intervention without consent.
Amber Smock played a key role in these efforts. Today, she continues to advocate on issues related to gender and disability, including forced sterilization and caregiving. Congratulations to Amber Smock—we look forward to seeing her advocacy and leadership flourish. Learn more about the 2008 Impact Awards and buy your tickets online.