A growing number of parents are seeking the “Ashley Treatment,” a highly experimental medical intervention designed to arrest the physical and sexual development of severely disabled children. This invasive medical procedure is named after the girl on whom it was first performed in 2004, when she just six years old.
The procedure entailed surgical sterilisation via hysterectomy, breast bud removal to stop breast development and extensive hormone treatment to freeze the child’s physical and sexual development. Ashley may age in chronological years but her body will maintain the appearance, size and weight of a six-year-old for the rest of her life.
Her parents and the medical staff involved in the procedure argue it was essential for Ashley’s long-term well-being. They maintain that pregnancy, menstrual pain and uncomfortable breast formation were their primary concerns. Since the procedure, her parents have claimed Ashley’s quality of life has increased because it has made it easier for them to take care of her within the family home.
Interest in the “Ashley procedure” is growing. Although reported incidences are not large (between six and 12 currently), increasing numbers of parents are seeking the radical procedure so they can provide ongoing care for their disabled child within the family home.
What’s the problem?
Firstly, the procedure is both experimental and highly discriminatory, being intended exclusively for disabled children. If you can’t do it to non-disabled children why is it permissible for disabled children?
Part of the procedure – sterilisation – was performed outside the law: a court order was neither sought nor obtained. Motivations behind sterilisation must be rigorously questioned to protect the bodily integrity for the child involved and to safeguard her best interests. Recent Guardian reports have indicated this disregard for proper judicial oversight continues with the new cases.
The experimental procedure negates the civil rights of disabled children, specifically the reproductive rights set out in the United Nations Convention on the Rights of Persons with Disability. Disabled people have the right to maintain their fertility on equal basis with others (according to Article 23). No one shall be subjected without his or her free consent to medical or scientific experimentation (according to Article 15).
Secondly, the procedure makes disabled women’s sexuality negative. Designed to arrest a disabled girl’s biological development, it removes those parts of her body pivotal to sexuality. Fully developed breasts are said to be uncomfortable; menstruation painful; and pregnancy an illegitimate choice for disabled women.
What’s more, by infantilising disabled girls, the procedure reinforces negative stereotypes of disabled females’ sexuality as unruly, undignified and unmanageable. It perpetuates myths that disabled women are “unable” to reproduce and “incapable” of providing care. It denies them access to vital reproductive supports and has resulted in the unjustified removal of their children, at higher rates than other populations.
The economics behind parental decision making
There’s a broader issue at stake here that has received little attention. Media coverage to date has focused on asking whether the procedure is serving the interests of parents or the disabled child. But few discussions make explicit the underlying conditions in which such decisions are made.
Ongoing cuts to disability and support services and reduced disability social security regimes create pressure for families to come up with long-term support for their disabled children. The increasing dominance of economic calculations within the social policy arena may be driving parents to make such decisions.
Factors such as the lack of safeguards addressing the sexual vulnerability of disabled young girls are linked to the minimal resources and supports available to disabled people. It is little wonder that more parents are seeking such radical solutions to the “problem of disability support.” We need to contest the cuts in disability social supports that are creating economic constraints, and consider the broader potential impact on disabled people if these types of procedures become rational choices for parents.
We must stop allowing irrational economic policies to legitimise shameful procedures that undermine dignity and respect for disabled people.