Watch your words on growth attenuation

A few months ago, I was interviewing disabled people for a project and the subject of the Ashley Treatment came up, since we were discussing reproductive rights and fertility. One of my interviewees — Sam de Leve, who has attenuated growth as a result of medications taken in childhood — made some comments that really stuck with me. They noted that in conversations about growth attenuation and the Ashley Treatment, some disabled people make comments that are themselves disablist.

One of the things that bothers me sometimes in rhetoric about the Ashley Treatment is that its opponents sometimes implicitly or explicitly disparage LPs and growth-attenuated people in our disgust at the physicians and families and the rationales they offer for the procedure. There’s nothing wrong or lesser about bodies like mine or bodies smaller than mine. One isn’t intrinsically less adult for being small, for not having breasts, or not menstruating, as some disability activists who oppose the Ashley Treatment have suggested, nor in a state of perpetual innocence because of our embodiments (as Ashley Treatment proponents sickeningly suggest, but as some opponents also say at times).

As someone who covers both the Ashley Treatment and disablism a great deal, de Leve’s comments concerned me, both because they were absolutely right, and because I’d never encountered anything of the like before despite reading, writing, and talking very widely about growth attenuation. The voices of people who are being harmed by the way some people talk about growth attenuation are notably absent from the conversation about it, and that is not acceptable.

I’m below average stature, in part because of medications I took in childhood, but I’m not a Little Person, and I also don’t share the identity and experience of people who are below average stature because of growth attenuation — I’m just a bog-standard short person. There are a lot of us. In some nations, I’m actually taller than average. So that’s not an experience I share, and it’s also not a community I hear from as often as I’d like. I was glad that de Leve felt comfortable bringing up a really important issue with me, and I in turn took it to heart and thought about it, and felt it was important to discuss in solidarity with those who are harmed by the disablism in some rhetoric about the Ashley Treatment.

Because we should be able to condemn something that has serious social, ethical, and human rights implications without disparaging other people. The problem with the Ashley Treatment isn’t small bodies, or lack of fertility: It’s the assertion of dominance over disabled bodies, and the practice of performing invasive, irreversible medical procedures without consent, or, in some cases, even discussion.

When it comes to fertility, victims of the Ashley Treatment are subjected to coerced sterilisation via hysterectomy, followed by the removal of their breast buds. Their autonomy over their fertility and their potential to breastfeed is stripped from them in the name of ‘convenience,’ and de Leve pointed out that it’s certainly interesting to observe that the procedure zeroes in on organs that many people have a deep, personal relationship with and associate with their identity. The procedure removes reproductive organs, ostensibly so patients won’t be ‘traumatised’ by the experience of menstruation, because menstruation increases personal care needs, and so they won’t get pregnant if they experience sexual abuse.

This is a completely disturbing approach to two separate concerns. The first: Yes, menstruation is traumatising if no one has taken the time to learn how to communicate with you and articulate what is going to happen and why. It’s also something that many disabled people do, and they figure it out. If they need help, their personal care attendants assist them. It’s worth noting that in a climate where slashes to disability services are perennial, some people don’t have access to the number of care hours they need, but the solution to that problem isn’t to mutilate their bodies for ‘convenience.’

When it comes to pregnancy as a result of abuse, it’s deeply, deeply disgusting to say that the solution to this problem is to remove people’s ability to get pregnant. Evidence from ample sources indicates that disabled people are as sexually active as everyone else, even though they have access to fewer sexual education resources. So let’s not pretend that the only time they engage in sexual activity is when they’re being assaulted. However, they are at a much higher risk of sexual assault because people view them as easy targets. Sexual abusers who want to go undetected prey on disabled women, and disabled women who can’t get pregnant are even more appealing targets. Do you want to stop abuse, or cover up the fact that abuse happened? Because I really hope you understand that there’s only one correct answer to that question.

The Ashley Treatment dehumanises through desexualisation, legitimising coerced sterilisation and the removal of bodily autonomy. Growth attenuation without consent is a bigger part of that picture, but again, the problem isn’t that the Ashley Treatment makes people smaller: It makes permanent changes to someone’s body, including someone’s stature, without consent. Denying the reality and autonomy of Little People and adults with attenuated statures is a slap in the face to them, and a reminder that people think of them as ‘childlike,’ ‘innocent,’ and not fully adult — including not fully sexual.

When we discuss this horrific ‘treatment,’ we should be doing so in the context of autonomy and bodily rights. And we should also be talking about why people think it’s a good idea in the first place, because many people cite very real concerns: Having to put their children into care, being unable to care for them as they get older, worrying about the number of care hours available, concerns about abuse. Some of the comments they make are also dehumanising, like referring to human beings as ‘pillow angels’ caught in a state of perpetual childhood, which is inherently disablist and offensive.

But we should talk about how disablism winds through the reasons why people torture their children this way, and how disablism influences their justifications and the way they talk about their children. This country has a critical shortage of care hours and services for disabled people and it’s going to get worse as a huge aging generation starts putting strain on the system. We live in a culture where people think it is okay to slash funding and leave disabled people trapped in bed in pools of their own waste for hours. We live in a culture where people think that sterilising children is somehow going to magically stop people from sexually assaulting them. These things are all connected.

We should be focusing on fighting disablist social attitudes and policies, without denigrating the bodies of our fellow humans.

Image: Max Wei, Flickr