Thursday, 24 May 2012

The Medical Model of Disability and Civil Rights

Big thank you to William Peace over at for linking to and commenting on the National Disability Rights Network's recently-released report, "Devaluing People with Disabilities". I was not aware that the report was available, and I found it fascinating. I do worry, like William, that the people who read the report won't be the ones that really need to read it, but I do like how thorough it is, how it frames the fight for disability rights as a civil rights issue, and that it uses the voices of self-advocates. Perhaps believers in the medical model of disability (especially people who support the use of the Ashley Treatment, discussed extensively in the report) will read it just out of curiosity, or a desire to justify what they believe, getting the report outside of the "preaching to the converted" circle.

"Devaluing People with Disabilities" uses the Ashley Treatment as a jumping-off point for discussion about disability rights as civil rights, illustrated specifically in the the ways in which the medical model of disability permeates ethics committees, hospitals and court systems.  Consequently, people with disabilities are, more often than anyone should be comfortable with, forced to undergo medical procedures (or have life-saving medical procedures, treatment, or even simple nutrition withheld) because of their disabilities.

The Ashley Treatment, the Medical Model, and Civil Rights

The Ashley Treatment refers to a number of surgeries and hormone treatments performed on a six-year-old girl with physical and intellectual disabilities back in 2006. Ashley's parents, ostensibly to preserve her quality of life as much as possible, had her growth attentuated so that she'd always remain small. Doctors also gave her a hysterectomy and removed her breast buds, so that she'd not have to deal with menses or the sexualizing effect (minimizing, the parents said, her risk of being abused). The parents called Ashley their "pillow angel", and justified their choices for her by saying that she didn't have the cognitive capacity to recognize what had been done to her or what it meant she'd be missing.

The ultimate legal problem with the Ashley Treatment (and any medical treatment/lack of where parents, a doctor, or a court decides that a person is too "disabled" to make their own decisions about their bodies and what they choose to do/not do to them) is that it's unconstitutional - hence the civil rights component.  It's very much a civil rights issue, even though most people choose not to recognize it as one. There are cases, of course, where a person with a disability has a power of attorney for healthcare, but that's very different than a doctor advising a family to remove nutrition when there's no terminal disease, or not perform a life-saving surgery, because a person's quality of life and prospect for "contribution to society" with their disabilities is so "low".

The point is, we treat people with disabilities in very different ways when it comes to health care than we do people without disabilities. We would never think of violating the civil rights of a six-year-old without disabilities by removing the uterus and breast buds - why would one even consider such treatments? Yet, for one with disabilities, it was okay to alter her body in drastic and unnecessary ways, to deny her the chance to mature into a grown woman, and to take away her option to have children.

Kurt Decker, Executive Director of the National Disability Rights Network, puts it nicely in the introduction to "Devaluing People With Disabilities":  "These conversations happen because the persons being considered are viewed as having little value as they are.  They are considered as not fully human, endowed with inalienable rights of liberty, privacy, and the right to be left alone - solely because they were born with a disability."

If that's not a civil rights issue, I don't know what is.

Read "Devaluing People With Disabilities", but be prepared - it will shock you. It should, at least.

William Peace's thoughts on the report:

More about the National Disability Rights Network:

Image credit: cteconsulting / 123RF Stock Photo

No comments:

Post a Comment