The mom of a special needs child shares why she is vehemently against stunting the growth of children with disabilities to make them easier to care for.
A few days ago, the New York Times ran a story called, "Should Parents of Children With Severe Disabilities Be Allowed to Stop Their Growth?" This provocative headline refers to a medical procedure that uses estrogen therapy to stunt the growth of kids with severe disabilities. While employing this "therapy," doctors have also performed surgeries on some of the children to remove their uteruses (so they would never get a period), breast buds, and other "adult" parts. The reaction to news of these procedures and the NYT story has been swift.
On one side of the debate, disability advocates like Alice Wong—who wrote a fantastic Twitter Storify sharing her opinions—cuts to the heart of the matter, saying things like: "Caregiving is difficult, no doubt. What about additional state services & supports? Where's the broader context?" or "Why does the child have to change their body (w/o consent) to make life easier for their parents? There are many non-verbal & developmentally disabled people who are aware but cannot object or give consent."
In a similar matter, Ingrid Tischer from the blog Tales From the Crip wrote a scathing indictment of substituting an unnecessary medical procedure for funding of in-home services and support. She answers the question of 'Why would we even consider a procedure like this?' with deeply satirical and bitingly poignant replies:
- "Because it's so much safer to be a physically immature person than a physically mature person when it comes to abuse and other forms of violence.
- Because what's the big deal if you're not even going to use your uterus?
- Because why would an adult caregiver consent to an experimental treatment to, say, increase their physical strength, instead?"
One the other side of the debate are parents of kids with severe disabilities, many of whom have considered getting this procedure and who are angry at those who judge them. I talked to several parents via social media who mentioned the hardships of caring for a large child with severe disabilities. Underneath their frustration was a very strong sense of not having enough help, and desperately wanting to do what was best for their child by continuing to keep him or her at home. Without adequate and affordable support, however, they found themselves contemplating and justifying choices like stunting their child's growth.
And while all of this has given me pause, it's not changed my initial gut reaction—which is one of horror—at the thought of a parent or anyone else manipulating a child's body for their own convenience.
I'm not trying to say that caring for a disabled child is easy—I know from caring for my own non-verbal autistic son how exhausting caregiving can be and I worry as he gets bigger and stronger. And I do think parents should have the right to make necessary medical decisions for the children in their care (note that I'm saying children here, as I think adults with disabilities should give their consent for such things through whatever means of communication they have).
But we cannot dismiss some bodies as "inconvenient" and then change them according to what's best for us.
We cannot simply cut out the parts we don't like—uteruses, breasts, whatever—and then hold a disabled person hostage in a child-size body because its easier to change their diapers when they're small.
Thinking like that is ableist and it's a slippery slope towards eugenics, of which the disabled community has tragically been a victim throughout history.
We don't need medical interventions like this. We need better supports for parents and their children with disabilities as they get bigger and as parents age. We need communities to reach out to help; we need better options for young adults with disabilities as they enter the challenging adolescent and early adult years. And we need our federal, state, and local governments to offer funding for medical and social services that will improve the quality of everyone's lives. We need to create a society where disability is not seen as lack and something we can just fix with a heavy cocktail of hormones and a few snips here and there.
But perhaps most importantly, we desperately need a world where no one would think that stunting a child's growth is the answer to the question of how we can help them live a better, more meaningful, and happy life.
Jamie Pacton lives in the Pacific Northwest where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her at www.jamiepacton.com and Twitter @jamiepacton.