Sunday, March 16, 2014

on being disabled watching newborns be checked to ensure they are perfectly not disabled

Note: audism, discussion of medical treatment of hearing, and general ableism in medicine

I have been incredibly preoccupied and overwhelmed with school so despite starting many posts I am only now completing one to post. Also, sometimes I plan ahead for this and schedule posts I've completed to only publish a week or two later. This means that as a reminder, something that happened "today" or "yesterday" according to a post could have been months ago. 

Today I went with a newborn to observe their hearing test. After the test, assuming the baby shows no signs of deafness, parents receive a pamphlet. I decided to look through it.

The pamphlet tells the parents in a congratulatory fashion, "Your baby has passed the hearing screening". The idea of "passing" the screening immediately caused me to think about what the alternative is. I asked a classmate, if the baby is deaf do the parents get a pamphlet saying "Your baby has failed"?

Inside the pamphlet there is a paragraph I found interesting. There are so many tests done on newborns I don't  think I can keep track of them. A lot of them happen without the parents even realizing or without them understanding. However, this particular test not only has a pamphlet explaining what the test is but why it is important.

It explains to parents why the hearing was checked and why it is important. It does so by saying that hearing is incredibly important and necessary for the baby to function in the world. That hearing is necessary to learn about the world. It warns the parents that hearing is necessary to prevent their child from doing poorly in school when they are older.

I understand why part of assessing a newborn would mean checking their hearing. I see the logic behind checking everything. I however saw no such pamphlet or patient education regarding non-disability related screenings.

So, I have a lot of thoughts, especially after reading that. It  brought up the general topic of how strange it is for me engaging in these assessments of babies to check to make sure they aren't disabled. It is a very bizarre experience to watch nurses do a test or check something on a baby to ensure that the baby isn't like me. To actually see how they react and talk about making sure a certain sign isn't present because it could mean the baby has the same kind of body that I do. Hearing how they talk about doing extra tests to rule out the possibility that a baby has something wrong with them that I do.

Thinking about what that means about how they will tell the parents if the child "fails" and is like me.

I wanted to hold that baby before his MRI today. I wanted to tell him that if he does have that thing wrong with his spine they are worried he might have, that it is okay. That I have it too.

I often feel guilty because standing there in the nursery in pain (despite wearing my TENS and my lidocaine patches) and watching the babies be assessed there is often a split second before we know the outcome of a test when I hope that they will fail. Sometimes, I hope that they will be assessed and deemed imperfect like me. Partially because I want to feel less alone there but also because I wonder what it would be like for the parents to see a single face not sorry for them after hearing the news. To have someone still be congratulatory on their beautiful new human being. 

I think it is in those few seconds that I feel most alone. Feeling the nurse's relief that this baby is worthy of the shrine to perfection that is a newborn nursery. Knowing that I don't belong. 

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