Perfect

A few weeks ago we had an appointment with one of Esmé’s doctors. He’s a good doctor. We have had a great working relationship for a number of years. I like that he is a specialist that realizes that while his particular specialty is his priority, it may not be mine with Ez. He knows that I will resist doing interventions as much as possible. He knows I will make jokes about how little we are able to carry out his prescribed therapy. And he knows that I will listen when something needs to happen.

We trust each other.

Like all of our current doctors, it is not an accident that we work with him. We’ve long since dropped doctors who don’t work well with us, opting, in many cases, to drive three and half hours away to Boston to find some of the best doctors in the world.

For this particular specialty, however, I never really considered leaving our local practice. I was always satisfied.

But during this last visit he sort of stopped me in my tracks with the language he used to refer to my daughter–language that betrayed something about how he sees Esmé.

I have written a lot about language here, how much I feel like the words people use tell stories about their experience with disability, tell stories about their feelings about people with disabilities. I bump up against this a lot in places that I expect it–people with little experience with disability using pitying language, or struggling to find the words to ask the kinds of questions they would like to ask and coming out, instead, with things like “what’s wrong with her?”

Sometimes I feel forgiving of such things–sometimes less so.

But I, perhaps naively, expected that doctors–at least the doctors we’ve been working with for some time–have a better understanding of disability, of the way we see Esmé, and of the importance of the language we use, especially in Esmé’s presence.

So, during this particular visit, the doctor and I were discussing a possible future surgical intervention. I wanted to understand the procedure in detail–including what was involved in the actual procedure, time in the OR, recovery expectations, as well as what the desired (and likely) outcomes might be.

The doctor did a great job of explaining exactly what would be involved–where the incisions would be made, and so on. I was just thinking about how much I liked him for going into such detail with me, and then, thinking out loud, he says: “But, really, I doubt that the surgery would be worthwhile in her case…if she were otherwise perfect, then I would recommend it…it really is primarily cosmetic.”

It took me a minute to understand what the hell he meant by otherwise perfect because who is “perfect” anyway? (And, frankly, if anyone is perfect, it is probably Ezzy, if you ask me…)

And then he said, “You know, if it would be something that would cause her trouble in the future–like if people would notice in a job interview or something…but that’s not going to be a problem for her.”

UH. Right. Now I see…First, he was trying to sell me a primarily cosmetic surgery for a five-year-old, which is nuts. Second, he thinks my kid need not be shown the consideration of being spoken about like she is a full human in the room with him. Third, he sees very little future for my child–while I am pretty sure she may be his boss in 20 years. Fourth, this guy sees the world in terms of perfect and imperfect…when we are all, each and every one of us, perfectly imperfect. (Fifth, I feel terrible for the child he sees as “otherwise perfect” and who is in need of fixing.)

I didn’t say anything in the moment–because, I’m a writer and my brain only finds witty responses ages later when I am obsessively revisiting the scene in my mind as my much more collected and well-spoken alter ego.

But I did pack up my daughter as quickly as I could…and as I walked out the door I leaned over my daughter and told her the truest thing I know “Ez, you are absolutely perfect just as you are. You are just exactly as you should be. And I love you.”