Sunday, October 07, 2007

Katie Thorpe's Womb to Be Removed By Parents

Thanks to our ever watchful Linda from Rochester, NY, we have learned that doctors are consulting with lawyers to get approval to remove the womb of 15-year-old Katie Thorpe, who has severe cerebral palsy. This case is apparently a first in the UK. The story is here:

In essence, Katie's mother and mother's partner are her primary caregivers and to protect Katie from the "indignity" of having a period, Katie's mom wants her daughter to have a hysterectomy. Katie is not judged able to communicate for herself. Hmm, doesn't this sound familiar? Where have we heard this before?

The language in the article is highly bothersome for activists who have worked for many years to make families aware of and able to utilize community supports for people with disabilities. Having bladder and bowel issues, undignified? Well, that's pretty much a human thing....but I guess when you're only one of two people cleaning up someone else, and you aren't being paid for it, yeah, it can suck. It might not be as stressful if there were people providing in-home service to help! Where are the in-home services for Katie Thorpe?

Beyond in-home supports, the cases of Ashley X and Katie Thorpe expose problems in our social expectations of families. We expect families to take care of their own, and we expect that at some point, kids are able to get out of the nest. However this assumes a lot of responsibility for independence on the part of the child. When a child needs a lot of dependent support, especially the 24/7 kind, the mold goes haywire. Families in this kind of situation NEED HELP. They NEED OPTIONS. But options are not really there, particularly in cases where the child is maturing physically into an adult and will not be covered by supports offered through public education. So people feel that solutions like hysterectomies make a lot of sense. Families say, "If you were in our situation, you'd do this too!" In effect, who are the rest of us to judge?

For a historical perspective, let's go back to 1962. I am thinking of Arthur and Daniel Miller. Arthur Miller's wife Inge Morath gave birth to Daniel that year. Turns out Daniel had Down syndrome. So Arthur had the baby sent to an institution, where he lived out his life. As far as we know Arthur never saw his son. Why did he do this? From social attitudes at the time, we can make a good guess that maybe he was ashamed, and that difference was disturbing. In those days Danny Miller would have been labeled a "mongoloid" and "retarded." Arthur Miller was freaking brilliant and had a reputation to preserve. So this is how people edit their lives.

And yet in the decades since, disabled people and families have seen a sea change. Geraldo exposed Willowbrook. Laws protect the rights of children and adults with disabilities. Forced sterilization was outed as a human rights violation. Elaine Wilson and Lois Curtis got the U.S. Supreme Court to recognize that unwanted, unnecessary institutionalization was illegal. Families saw that including and caring for disabled kids at home was possible and enriching. We are on a path towards embracing biodiversity, neurodiversity, all the children that are born to us.

The problem is, we are in mid-step on that path. Families who were the first to care for disabled people at home are aging out and dying, leaving our people with no one. Many are fighting hard to keep people with disabilities in institutions because there are no current community support systems that they trust. Young adults who were part of the first wave of children to have access to least restricted environments are finding that, after high school, supports are gone and we don't know how to advocate for ourselves. And the young people who have no way to communicate (that anyone can figure out) are stuck at the mercy of social systems and expectations that can't meet their needs. These are the folks at the absolute vortex of the disability rights movement discussion, the absolute tip of the wedge. If their rights can be violated, so can the rights of us all.

We are all stuck in this together, and we cannot forget it. If girls like Katie and Ashley are considered never to be really girls or women, then women with disabilities everywhere need to resist, both because those girls are our sisters and because it only takes a few to make change for many, both good and bad.

Katie Thorpe's womb hasn't been removed YET. There is some small window here to raise the issue of community supports, to try to ensure that that is considered as a viable option. Can you help spread the word, FRIDA Fighters?