When Disability Gets in the Way, Stunt It

You may have read one of the many articles about Ashley, a nine year old girl who is having her uterus and breast tissue removed without her consent, and is being given doses of hormones specifically designed to prevent her from growing, a “treatment” that was requested by her parents and unbelievably approved by a hospital ethics committee in Seattle, Washington. Ashley has been diagnosed with “static encephalopathy” a rare brain condition and is variously described in the media as unable to talk or walk, and as having the “mental ability of a three month old”.

Every public story about the abuse of someone with a disability leaves me horrified. I want to draw out some of the sexual and gender implications of what’s going on here that, surprise surprise, the mainstream media hasn’t dealt with. But before I do, it’s worth pointing out a simple fact.

If you believe in basic human rights, you have to extend them to all humans. You can’t say that you believe in human rights, but not for people who can’t articulate their value. You can’t say that you believe in human rights but not for people who would be better off dead. If you’re able to tell yourself that in this one case, it was okay for parents to mutilate their daughter with absolutely no cause, and no medical argument, then you need to rethink your definition of basic human rights.

Now what does any of this have to do with sex and gender?

Lots.

Ashley’s parents say that the reason they wanted to have her uterus and the growing breast tissue she had removed was for Ashley’s own comfort and safety. They say that she shouldn’t have a uterus because “she has no need for it”, and they worry about the possibility of her being sexually assaulted and getting pregnant. They say she shouldn’t have breasts because it might increase the likelihood of sexual assault, and besides, they’ll be uncomfortable. And both they, and plenty of media, claim that this is a reasonable action, and one that could be taken for any child in this situation.

I started to wonder how this story might be different if Ashley were a boy. Would the parents be removing the boy’s testicles? Would they get permission to have the entire penis removed? I don’t think it would ever enter their minds if they had a little boy. Boys need to grow big and strong. Boys need their penises. Boys don't get sexually assaulted. This would be going down very differently if Ashley were a boy.

Ashley’s parents claim that they wanted to have their daughter’s uterus cut out because it would prevent her from getting pregnant if she were sexually assaulted.

But the actual point is that they should try to make sure she doesn’t get sexually assaulted, not that they do something to her so they’ll never know if she does. Comments like this make me wonder how aware these parents are of the signs of sexual assault. If the only way they know that their children have been sexually assaulted is if they appear pregnant, the problems lie not with the child but with the parent. It also needs to be pointed out that just because someone isn’t going to use their uterus, or there’s a 99.9% chance they won’t, it doesn’t mean someone else has the right to remove it, without consent.

Ashley’s parents claim that they wanted to prevent her from developing breasts because breasts might increase the likelihood of her being sexualized and sexually assaulted.

Infants are sexually abused, and children of all ages are sexually abused, and sexualized in the making of child pornography. The idea that her having breasts make her a greater target is ludicrous. Ashley’s parents offer up their real motivation for this themselves when they wrote that the real grotesqueness in the situation is “the prospect of having a full-grown and fertile woman endowed with the mind of a baby." Reading that sentence out loud makes me physically ill.

Ashley’s parents claim that they wanted to prevent her from developing breasts because having breasts would make it physically uncomfortable for her to lie down. I did a quick survey of five adult women all over the age of 30; none of them found having breasts so painful that they wish their parents had removed their breast tissue as it was developing.

Again, these are all excuses manufactured by the parents to justify their actions, which are neither humane nor justified.

But the parents are not the only ones who need to be held to account for their actions. When I read this story I called a friend of mine who is a doctor and an adolescent medicine specialist. She hadn’t heard about the story, and could not believe that these parents found an ethics committee that would go ahead with this.

In the BBC article, one of the doctors on the committee is quoted as saying that the committee agreed "because the parents convinced us it was in fact in this little girl's best interests". That ethics committee was not there to protect the parents; they were there to protect the patient. They failed completely in this task and should simply be ashamed of their complicity in this decision.

I do a lot of work around sexuality and disability, including working with people who have developmental disabilities (the kind of people who are often referred to as having the mind of a six year old). I can tell you that consent is never a black and white issue. I can also tell you that cognitive ability is never black and white. Saying that Ashley has the mind of a three month old is, at best, quoting someone’s educated guess. Ashley’s disease is rare, and no doctor or parent can with 100% certainty predict the course of the disease, or what her entire life living with a disability will be like. It also needs to be said that cognitive ability is not the same thing as lived experience. Someone may not be able to read, but it doesn’t mean they can’t feel, communicate, experience pleasure as well as pain, and live. These are all possibilities. But many of these possibilities have been ripped away from Ashley, and regardless of how well meaning her parents no doubt are, we should never pretend that their actions are acceptable.

"Because it’s easier to carry her around" is not a compelling reason to permanently stunt someone’s growth.

"Because I couldn’t stand the thought of her being pregnant" is not a reason to permanently make someone sterile.

"Because I can’t imagine wanting to live like that” is not a reason to take someone’s life.