Never mind the paving stones. Do you know where you're going?

"Of all tyrannies a tyranny sincerely exercised for the good of its victims may be the most oppressive... those who torment us for our own good will torment us without end for they do so with the approval of their own conscience...

To be 'cured' against one's will and cured of states which we may not regard as disease is to be put on a level with those who have not yet reached the age of reason or those who never will; to be classed with infants, imbeciles, and domestic animals. ...

Or those who never will.

Hold that thought.

The new Nero will approach us with the silky manners of a doctor...

Even if the treatment is painful, even if it is life-long, even if it is fatal, that will be only a regrettable accident; the intention was purely therapeutic...

But because they are 'treatment, not punishment,' they can be criticized only by fellow-experts and on technical grounds, never...on grounds of justice...

But we ought long ago to have learned our lesson. We should be too old now to be deceived by those humane pretensions which have served to usher in every cruelty of the revolutionary period in which we live. These are the 'precious balms' which will 'break our heads'."

--C. S. Lewis, "The Humanitarian Theory of Punishment"

(as found here)

Via Feministe (among others): it's the new trend heard round the world!

Mother seeks girl's womb removal

A mother is seeking to have the womb of her severely disabled daughter removed to prevent the 15-year-old from feeling the pain and discomfort of menstruation.

Doctors in Britain are now taking legal advice to see if they are permitted to carry out the hysterectomy on Katie Thorpe, who suffers from cerebral palsy.

But a charity campaigning for the disabled said on Monday the move could infringe human rights and would set a "disturbing precedent."

Andy Rickell, executive director of disability charity Scope, told the Press Association: "It is very difficult to see how this kind of invasive surgery, which is not medically necessary and which will be very painful and traumatic, can be in Katie's best interests.

"This case raises fundamental ethical issues about the way our society treats disabled people and the respect we have for disabled people's human and reproductive rights.

"If this enforced sterilization is approved, it will have disturbing implications for young disabled girls across Britain."

Katie's mother Alison Thorpe, who lives in Billericay, southern England, said the operation was in her daughter's best interests.

"First of all, this is not about me. If it was about me, I would have given up caring for Katie a long, long while ago," she told GMTV.

"It is about quality of life and for Katie to not have the associated problems of menstruation adds to her quality of life. It means she can continue with the quality of life we can give her now.

"Katie wouldn't understand menstruation at all. She has no comprehension about what will be happening to her body. All she would feel is the discomfort, the stomach cramps and the headaches, the mood swings, the tears, and wonder what is going on."

Oh, okay. So, she will have -no comprehension- of why she feels the relatively mild pain of the monthlies. (and of course she can't be given the Pill or extra-strength Tylenol or anything like that). That would be bad.

A nonconsensual hysterectomy, though, well, that'll go down a treat, won't it? I mean, it's only major surgery involving total anaesthesia and removal of an organ and stitches and o i don't know, maybe just maybe some PAIN afterward? Oh, short-term, of course. Here's the very first commenter on feministe on that short term pain:

I was diagnosed with cancer at 26 and had a hysterectomy shortly thereafter. I would prefer another 20 years of periods to that. The recovery period was a minimum of 6 weeks. If the teenage girl’s disability impedes her ability to walk, her recovery may likely take even longer. On top of the 6 weeks, I also had to have a suprapubic catheter (i.e., a tube of pee coming out of my abdomen and into a bag on my leg) because of some complications during surgery. As a result of that, I kept getting recurring infections and was eventually re-hospitalized because of infection and dehydration.

And of course, with CP, nothing could -complicate- the recovery period, you know. But most of all, the -important- thing is, well, it's better for her in the long run, isn't it? It's not like she'll be in any terror or confusion or misery after this, and in any case with a major operation like this, well, Mom and everyone can keep her drugged to the gills so she -really- won't have a clue what's going on. Probably. And then, poof! All better! No lasting scars that anyone'll care about, and most of all, -no monthly mess.- Anyway, it's not like she can -say- anything about it, is there?

Yes, the IMPORTANT thing is, Katie won't be bleeding from her hoo hoo and won't thus reach physical womanhood. The "inconvenience" and "indignity" of it all, in her Mom's words. THAT would be VERY UPSETTING. For Katie. Of course. Who else?

See FRIDA for more.

FRIDA feels the core of the problem lies not only in the blatant sexism involved, but in the lack of community supports for families of children with severe disabilities. With only one or two parental caregivers, these families face enormous unrelieved stress without any recourse to professional, well-paid respite care. Cases such as Katie's continue to demonstrate that society must change to include the individual with a disability. Surgical intervention is not the answer.

International advocates for disability rights have long advocated for the right of disabled people to bodily integrity. The UN Convention on the Rights of People with Disabilities, which took two years to shape, specifically states that bodily integrity is a human right.

and

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.