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Thursday, October 11, 2012

More thoughts on Disability

So, I'm still working out what this word means. In general, and for our family specifically. Thanks for bearing with me as I work this through out loud and in stages.

The Word Itself
As a person who until very recently had the luxury of not having to give the word too much thought, I always took the word "disability" to have negative connotations. Dis-ability means, literally, "lack of ability", or "lack of aptitude". In Spanish, the adjective "minusválido" literally means "less valid". It's hard not to see a value judgement in this word, so I believe a more preferred term is "discapacitado." Like the word disability, the prefix "dis" implies a lack; they suggest that something is missing. So, is part of the problem that I am negatively interpreting the term "disability'? But, how can I not? The negativity is inherent in the prefix itself "dis."

This summer I read a wonderful example turning this negativity on its head, which I talk about here. And many people of short stature or parents of children with a form of dwarfism will emphasize that they can do the same things as everyone else, though they may have to do them a little differently. So, where does disability come in? When they cannot do something? When they need special medical care or require corrective surgeries?

Hypochondroplasia and Disability
Right now, Belalu does not have a disability. She is at or well beyond all her developmental milestones. She is not impeded in anyway by her hypo. In fact, we're always so surprised at her reach, given the length of her arms. She's constantly getting into things we thought were out of reach. The other night, she put her leg over the bathtub edge and got out herself! It seems that for now at least, flexibility and determination compensate for shorter limbs.

What is not clear to me, however, is how her condition will inform her physical negotiations of the world as she gets older. Why is there so much emphasis on the one hand about LPs being "just like everyone else" and yet on the other implications that short stature is or can be a disability? When I first heard about limb-lengthening, I thought it was a cosmetic procedure. However, many people say that it helps them get around easier in a world not built for them.

This summer I watched an old episode of Extreme Home Makeover, where they constructed a house for a family whose daughter has achondroplasia. At the beginning of the show, her mom talks about how their house is dangerous for her, the stairs are too steep and too many, the counters and the door handles are too high, she cannot do many things on her own because of the way the house is built. On the other hand, I watched an interview with the Johnsons, a family of dwarfs, and Barbara Walters, and they chose to not change anything about their furniture or their house, even though they were all little people. The parents said they would not raise their children to believe themselves disabled: "We don't have a 'woe-is-me' attitude" seemed to imply that people who consider themselves disabled do? But perhaps that was just the editing from the producers.

So, honestly, I don't know what to think. I still don't have a handle on what it is going to mean for Belalu that she has hypochondroplasia. Will she have difficulty negotiating day-to-day stuff because of her height or her bodily proportions? Will she need to have surgery (perhaps multiple ones)? Will she have a lot of pain at some point in her life? No one seems to be able to tell us that now. Like any parent, I want her to be able to do what she wants in life, and I want her to be happy with who she is. Her hypo is a part of her, but it does not define her.

1 comment:

  1. Let's chat about this when we meet... I have spent a LOT of time contemplating this... and am probably the other side of the spectrum than most people in the US which you may find interesting...