Throughout the last two years, I’ve had to introduce my daughter Amelia’s deafness to a lot of different people. In that time I have encountered a wide variety of questions and comments.
Some of these were part of the painfully insensitive ride we’ve had dealing with emotionally guarded specialists who did not handle us with the care we needed. Other comments followed close on the heels of the diagnosis when people really tried to say the right thing.
Sometimes they did (e.g. I am so sorry for you = that worked for me EVERYTIME). I don’t mean to disparage people who know very little about deafness – before Amelia I had formed all of my views from the 1962 film The Miracle Worker (The main image on this post is from the film. Helen Keller is still my hero and Anne Bancroft is not far behind).
It’s a sliding scale, from words that still ring in my ears, to some that are kind of funny in retrospect and others which simply point to how little is understood about deafness in the wider community:
- I don’t think she’s autistic, but there is something wrong with her… (Paediatrician’s comment after finding Amelia could not understand him properly or communicate with him at age 2, pre-diagnosis. It’s all in the tone).
- It is most likely something permanent and irreversible. I’m not optimistic about it and there is nothing more I can do for you (Ear, Nose & Throat (ENT) surgeon, ‘gently’ telling me something was very wrong with Amelia’s hearing at age 2+).
- Don’t worry, the doctors are probably being overly cautious and she will grow out of it anyway (you would be surprised how many people think that a child can grow out of their deafness).
- Well, it is the disability of choice (yes, on reflection it really was the best cut of a smorgasbord of problems we might have chosen for our child).
- Don’t worry, every child has something wrong with them (examples offered include: my child has eczema or allergies or wears glasses).
- Does Amelia need a special carer to be with her at childcare? (um, NO).
- She has hearing aids now so everything is fixed, right? (again, NO).
- Will she be able to go to a normal school? (I admit that I asked this one. First thing I said after I stumbled out of the testing booth at the hospital. Lots of people have joined me in asking this once since then and the word normal crops up with dazzling regularity).
- But if you teach her Auslan (Australian sign language) will she still learn how to speak? (There is no evidence that learning sign language impedes oral speech and language development but this is a common view).
- But you don’t need to use sign language if she has hearing aids, do you? (Even with aids, Amelia does not hear everything and most of the time she is in environments with some background noise which compromises what she can hear. At bathtime and bedtime she does’t wear her aids. You tell me if you think sign language is important or not).
In all honesty I would rather handle 20 of these questions if it leads to some kind of enhanced understanding about deafness and its impact on Amelia’s day-to-day life.
I’m sure there are many more of these that other people have heard. I’d love to hear them if you feel like sharing.
By Melinda Hildebrandt.
Melinda is author of the blog ‘Moderate-severe / profound … quirky’ and the mother of her deaf daughter Amelia. Follow her on Twitter @drmel76
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