In my latest for the Guardian, I take a close-up look at a story in the Washington Post Magazine about a teenage girl with dwarfism who underwent dangerous, painful surgery in order to become taller.
The Post story is an extraordinary achievement. At root, though, it stands as an argument that dwarfism is a difference that ought to be fixed. Our experience in raising a daughter with dwarfism tells us that’s exactly the wrong approach.
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It sounds as if the Washington Post Magazine went with a story with a certain kind of dramatic arc — I get frustrated with the apparent emotional need for a dramatic hook, especially if it’s at the expense of our need for more helpful perspective and insight.
I just did a post about this, wanted to share.http://www.blogsmonroe.com/disability/2008/12/short-grow-taller/Tonya, Knoah’s mom
This reminds me of the debate about cochlear implants in deaf children. Apparently some members of Deaf (with a capital D) culture oppose the implants, arguing that deafness is not a disability. (It seems to me that it is, but they will rightly say what I think doesn’t matter.) The arguments against the implants are similar and include the fact that the procedure is invasive and therefore risky. Here’s an example abstract that describes the issue. An interesting point made there is the positing of a situation in which the cochlear implant was not risky. What if the procedure was both risk-free and effective? This seems an interesting thing to ponder as it reveals that the decision may lie more on a sliding scale rather than on an absolute objection. That is, a disability/difference may be more or less worth changing depending on the complexity of the procedure, rather than resisting the change regardless, on principle. The mainstreaming of the disabled has happened in the US amazingly quickly I think. I met a kid at the Y yesterday who has cerebral palsy. I knew him from scuba diving in Cape Ann and he was a member of a group of us who dove in Bonaire a few years ago. He’s at the crowded Y getting barely a glance. He graduated from NSCC this year. It’s amazing–not long ago somebody in his situation would never have been able to be “out there”. On the one hand we can expect society to change to be more accepting of difference. On the other hand until the day that society is completely “difference-blind”, it’s good that technical solutions are a possibility for some.
And old post, but I just came across it. I had read where you aspire for dwarfism to be another type of normal…. While I understand an applaud it, it makes me rather sad and wistful. Practically, for this to happen I think it would require a huge population of dwarves for the population at large to adjust, understand, and see it this way. But with dwarfism so relatively rare and with the heightism and prejudice that rampantly exists, I don’t think this will ever happen. Although, I wish it wasn’t so.