The Ashley Treatment and who tells the story

Growth attenuation — also known as the Ashley Treatment — is one of the most bizarre, deeply troubling, and horrific ‘treatments’ inflicted on disabled children, with their parents performing surgical mutilation and aggressive hormone treatments on nonconsenting children because, they claim, it’s better for them. While it is thankfully unusual, it has been used in a number of places around the world with little criticism, except from disabled people, who have been largely ignored — and while nondisabled bioethicists may express some discomfort with the idea, they still seem to think it’s more or less okay.

Periodically, it pops up in the news again, the obnoxious pimple of disability news, and every time, the people who get to talk about it are ‘experts’ who aren’t disabled, and parents. Stories are inevitably framed from a parental perspective, talking about how difficult it is to care for disabled people, and how we should have sympathy for parents who were expecting beautiful perfect children and instead ended up with broken duds, people who would need extensive support and care throughout their lives. But lo, there’s a ‘treatment’ that facilitates care, turning children into ‘pillow angels’ who are lightweight, less messy and inconvenient. Perpetual innocents.

I remarked in 2012 that this is incredibly dehumanising, as such aggressive ‘treatment’ would never be considered acceptable if nondisabled children were involved, but it’s reasoned to be a ‘moral compromise’ when children are ‘confined to a wheelchair’ or ‘nonverbal’ or ‘profoundly disabled.’ Yet, people still do it, and they keep being the subjects of uncritical stories — or stories that talk about their ‘difficult choice’ to mutilate their children, but don’t really explain why this choice is difficult, how harmful it is to children and the disability community, why disabled people are so upset by it.

The New York Times has been the latest to join the fray, with a March feature by Genevieve Field in which she managed to go on at length about how disability is inconvenient for parents, interviewing parents and ‘experts’ in a piece she claimed was supposed to be a neutral, evenhanded representation of ‘both sides’ of a hotly-contested issue. The fact that the basic humanity of disabled people is still considered to be a contested issue is a disturbing testimony to the disablism that runs rampantly through society. It’s hard to believe that a feature on forced sterilisation and surgical torture along with nonconsensual use of hormones and other drugs would be considered ‘balanced’ only if it included the other side unless it was a story about people who aren’t considered humans.

But in this case, ‘the other side’ is the side directly affected by such surgeries and the continued tolerance for them. The article didn’t include a single quote from a person who identified as disabled, let alone quotes from disabled parents, disabled bioethicists, or other disabled people who are also experts in this field. Only a handful of references were made, one including a snide comment about being ‘bitter,’ and the article centred squarely on the parental experience, which is a common trend — as is assuming that disabled people can’t be parents, as the article lingered over how hard parenting is when your children aren’t born perfect.

Features on practices like these are critically necessary. Many nondisabled people don’t know that the Ashley Treatment exists, or they aren’t familiar with the specifics involved. They should be aware that disabled children with some developmental impairments are being subjected to horrific medical procedures without consent or respect for autonomy by nondisabled people, surrounded by an approving audience of nondisabled people including physicians, surgeons, bioethics committees, and the like. But these stories shouldn’t be narrated by nondisabled people: They should be narrated by disabled people, speaking for themselves.

Numerous disabled journalists would be great candidates for writing an excellent, strong, powerfully-researched feature on the Ashley Treatment, one that would involve interviewing lots of people about their lived experience as well as having conversations with disabled experts in the medical and bioethics field. Such a feature would focus on the real stakeholders in this conversation, the people with bodies and lives on the line in a culture where they are hated, feared, and presented as incalculable burdens that ruin their parents’ lives.

Features like this are disablist, and also incredibly harmful. They’re a reminder to disabled readers — yes, disabled people read things — that they don’t belong in society, and will always be considered lesser, not quite human. Only through infantalisation will their humanity be recognised. Only through procedures that keep them ‘innocent’ will they be considered acceptable.

This feature didn’t talk about sexual and physical assault and disability, let alone how forcible sterilisation can facilitate these acts. It didn’t talk about the thoughtful, thorough dissections of the Ashley Treatment from the disability community. It didn’t talk about objectification, infantalisation, dehumanisation. It made a passing reference to the ‘social model’ that looked like it was pulled straight from Wikipedia, occupying not even an entire sentence, but that was it.

Of course, when things like this are published and the disability community comments on them, most people don’t listen. Those who do are swift to defend it, as Field certainly did when people challenged her. Parents come pouring out of the woodwork to talk about how difficult their children are and how they wish they could have this series of procedures done on their own children. Nondisabled people lecture about disabled lives and the value of disabled bodies. At the end of the day, the disabled critics are labeled ‘bitter’ and their voices discarded, because, really, who needs to pay attention to a bunch of whiny cripples?

When talking about disability issues, the media has a duty of care to centre disabled voices in those conversations, and Times editors did a tremendous disservice to this piece by not demanding that Fields educate herself. Given the low representation of disabled people in editorial, that’s not a big surprise — because it’s very rare to see a nondisabled editor carefully considering the potential repercussions of a disability-related piece, let alone learning from critiques of things like this.

Image: Jessica Lehrman, Flickr