The top 10 dumbest comments & questions I have heard about Amelia’s deafness

Signing 'water': Anne Bancroft and Patty Duke in The Miracle Worker (1962)

Signing ‘water’: Anne Bancroft and Patty Duke in The Miracle Worker (1962)

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 (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:

  1. 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).
  2. 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+).
  3. 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).
  4. 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).
  5. Don’t worry, every child has something wrong with them (examples offered include: my child has eczema or allergies or wears glasses).
  6. Does Amelia need a special carer to be with her at childcare? (um, NO).
  7. She has hearing aids now so everything is fixed, right? (again, NO).
  8. 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).
  9. 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).
  10. 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 doesn’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.

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17 thoughts on “The top 10 dumbest comments & questions I have heard about Amelia’s deafness

  1. I am not a parent at all, but I never really took the time to understand the challenges deaf people face, but the other night I watched s movie called My name is Jona…it was a bit over acted but the message was great…I can’t believe that there is still debate on weather or not to teach a deaf child to sign..I think communication should be sought in any for possible with any child..if it’s signing then sign, if its drawing then draw..like I said in the start I am not a parent, that because I am sure I couldn’t do somthing as important as shaping our future..Thank you to all of you who have taken on the challenge of parenthood and are giving it your best.

    • Before I was a parent, I gave little thought to these challenges myself. But regardless, I think even if my daughter wasn’t deaf I feel as though i would reach similar conclusions about the importance of sign language to deaf education and identity. Of course it’s helped to have a more intimate reason to work this out, but your comment is valid and much appreciated whether you are a parent or not. Thanks for the support! Melinda

  2. The comment I abhor most is “I could never do what you do” (implying that I must be extra special, patient and kind) OH YES YOU COULD, and you would if you had a child with a disability. You WOULD catheterise 6 times a day, change pooey nappies on a 5 year old, frequently attend appointments at RCH more than an hours drive from your house. You do what it takes because that is what you do as a parent – LOOK AFTER YOUR CHILDREN. Whatever it takes. I am not a “carer”. I am a parent.

    • Urgh, what an awfully loaded comment that is! I think one of the things I’m trying to say through this blog is that I’m not some kind of superwoman, I’m just an ordinary person dealing with the hand I was dealt the best way I can – there’s nothing extraordinary about it and lots of people do it with tougher challenges EVERYDAY. I might receive a carer’s allowance but I don’t relate to that term either – I’m a parent and I make mistakes just like everyone else. So patronising!! Thanks Sue x

  3. Pingback: What happens at the park, stays at the park | moderate-severe/profound... quirky

  4. Thank you for that post. Our son has hearing aids and struggles to still understand in so many situations. Professionals keep advising us not to teach to sign as they are worried about him relying on it. We are all so frustrated trying to communicate. I have wrestled with it but you have helped me make my mind up to follow my instincts and let him sign as well. I totally relate to so many things on that list. We also have a son with aspergers.

    • Hi Melissa, I am really excited to hear from you here – can you tell me what level of hearing loss your son has? I have heard from other parents about the pressure to keep signing out of the picture and I feel it subtly frowned upon in certain medical quarters too. It is a big challenge to learn how to sign and teach it to your child, but I can honestly tell you that my instinct was the same as yours and we have never looked back. From day one, Amelia learned signs she could never have understood in speech and we started to get our daughter back. She was so angry before she got her hearing aids and we learned sign language. I think a bilingual approach is great but it’s a personal choice. You go with your gut and don’t let anyone put you off. I am actually about to post something tomorrow on this theme so I’d love to know your thoughts. I hope you find some stories here that resonate with your unique journey through deafness and asperger’s. Take good care x

  5. I am a mum to a boy with an asd and a special education teacher, and I have heard a lot!
    “Will my child catch autism if he plays with your son?” From a parent
    “He talks so he is not autistic” from a family member
    “He has an imagination so it can’t be aspergers” from a psychologist
    “Make him stop spinning!, It is making me sick” From a teacher to a parent of a child with an asd
    “She is just lazy” from one parent to another parent of a child with cerebral palsy in a wheel chair

    • I had to laugh out loud at these they are so shocking! Esp. the stop spinning he is making me sick one. My god! When I tell people Amelia has been diagnosed with high functioning autism they say, ‘oh but she seems so normal’. I can feel their skepticism, like I’m making it up. Thanks again for sharing these, I feel a bit better about some of the comments we get because they are so similar. Thanks also for reading!

  6. We have got –
    “Does Carly sleep in her wheel chair, she wouldn’t need a bed”?? Mmm really?
    or
    “Will ur babies be like her when u have kids”? Ha!
    My problem is people staring, I don’t mind when kids do it, they don’t know better but adults should so I give them a show ha!

    • Jodes, these are just AWFUL. The staring is a tough one, I agree. Because Amelia’s ‘disability’ is less visible than for someone in a wheelchair, we get less of that. Kids who see her aids in the park will ask her about them or want to touch them which is really fine. Good on them for not being shy. I can just imagine what you say to those people staring at Carly – woe betide them! So proud of your new job with the NDIS implementation. They are lucky to have you. Loving your comments on the blog so please keep them coming.

  7. You know, as long as the answer to this question is ‘YES’ then I am happy. “Will Amelia still call me Uncle Roo?” I hope this never changes.

  8. Laughing out loud at the comments.We have almost heard them all. On this journey in parenting a deaf child and to some extent in our own bubble, you think that you are the only one to have been hurt / wounded at some point by one of these comments. Thanks for sharing you made me feel less alone on this at time rewarding but also at times difficult path. Natalie Mother to 3 children 2 hearing and Lucy my youngest with mod/severe loss and auditory neuropathy

    • Fantastic to hear your thoughts Natalie – really glad that the comments made you laugh the second time around. Sometimes I just roll my eyes or take a deep breath and take my time to answer. It depends on the day. I feel less alone too when I connect with other ADK Mums because we are all in the same boat together. Please share your thoughts here anytime you like.

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