FYI I ramble on lots in the beginning of this post, if you want to skip straight to the review I wont be offended, click here
I've been trying to weed through my NetGalley shelf... it can be tough to control yourself when there are so many amazing new books out there and they are all free... you request a few thinking "oh maybe I'll get approved for one or two of those..." but you get approved for them all (yay!) and suddenly your shelf is overflowing and your review percentage is tanking (yikes) and the titles/descriptions of the newer books are more fresh in your memory so you're more likely to start reading those ones (yay) and suddenly a book has been archived for months and you haven't even started it... (yikes again). Anyway, I decided to go backwards in my shelf, go through the books that I requested the longest ago and add them to my actual TBR to check some of those off!
I was interested in The Shape of Sound by Fiona Murphy when I first downloaded the book from NetGalley, sometime before May 2022 when it was archived (oops - luckily I had already saved it on my kindle...) but it means so much more to me after this summer.
For the last few years I have noticed some weird stuff with my ears and my balance. As a choreographer for middle school musical productions, by sense of balance has had a more important part of my life in the last few years than in the years following my own middle and high school performances, yet my lack of coordination seems to be getting worse. I also started experiencing ear aches and what I assumed were ear infections (though my doctor wasn't sure why she couldn't visually see a problem in my ears when I had obvious symptoms...). More recently, I noticed that I have a really hard time hearing David sometimes. I'm developing a bad habit of asking him to repeat it once and then pretending I heard him and smiling/nodding agreement... a habit my grandma and dad both are bad for...
My grandma was partly deaf all while I was growing up. My cousins and I never understood her silly actions which included:
- complaining that the radiator was too loud (but you're deaf?! we'd question)
- smiling and nodding when we said things that required answers
- answering completely random responses ex. "Which highway are we taking?" was answered with "it's 11:30 right now".
- walking away when we're talking to her
- leaving her hearing aids anywhere other than her ears
Last summer, my dad revealed that he was losing his hearing. I asked if he had the same thing Grandma had and he said no, his was from working in loud environments, hers were some kind of tumours. Both explanations made sense. My grandma died of cancer, after surviving cancer treatments before I was born, she went through two more battles with cancer in the 18 months before she passed away. Tumours sounded like they fit. My dad worked for Coca Cola when glass bottles were still used and the sound of those bottles rattling was likely louder than I could even imagine, more recently he worked at the Canada Life Centre (formerly the MTS centre) as a stage hand in concert conversion. Loud music can certainly affect hearing, that fit too.
This summer my dad was sporting some fancy hearing aids at the cabin, which he left pretty much anywhere other than his ears, add that to his usual smiling and nodding, complaining about the sound of the fans, walking away when people were talking and responding with unexpected answers to questions, I was starting to feel some deja vu. He also casually announced that he has what Grandma had. I found this surprising since he previously told me that wasn't the case. He explained that he previously didn't actually know what Grandma had, but once he saw an audiologist who asked if he had a family history of Acoustic Neuroma, he asked my aunts and they told him that yes, that was what Grandma had. Apparently if a parent has Neurofibromatosis Type 2 (only 5% of people with Acoustic Neuroma have this type- the type with tumours), there is a 50% chance each of their children will also have it.
Since this summer vacation revelation, I've spent some time learning about my potential future hearing problems (don't worry, I'm not a hypochondriac, I just want to be slightly more proactive than my dad who waited until 65 to seek a diagnosis for a genetic disorder his mother had, while experiencing symptoms for over 30 years), and I definitely feel like I understand my grandma's silly behaviours a lot better. She walked away from us at the cabin because the fans were on and she didn't hear us talking over them, she answered questions with random answers because she heard part of the question and tried to piece together the rest of what was said, she hated the radiator in that hotel room because it meant she couldn't hear her daughters and granddaughters talking as they relaxed after a shopping trip in the states. I also realized why I feel so frustrated when David plays a loud baseball games or techno music on the radio overtop of the water is running as he does dishes and tries to tell me about his day. The dull aches in my ears that I keep thinking are the start of an ear infection but never get worse or better might also fit in this puzzle. Two weeks ago, when David and I went to dinner with our two sets of parents to celebrate our engagement, I chose the patio for the quieter space and while I told myself it was for our dads (his is also losing his hearing), I also felt some relief that I wouldn't have to strain to hear anyone.
I feel fortunate that right now I can hear quite well in most situations but I wonder what might happen if one day I do start to experience marked hearing loss (or, what Fiona Murphy challenges readers to consider calling 'deaf gain'). Will I refuse to wear my hearing aids? Will my future grandkids think I'm just crazy for walking away when they are talking to me? Will I start to feel many emotions as I process huge changes in my life? Murphy's memoir was exactly what I needed as more questions than answers began to make their way into my life
The Shape of Sound is a beautiful memoir about a young woman who was diagnosed with partial deafness during childhood. She was assessed as being completely deaf in her left ear, and when she was in her young adult years she also began to experience increasingly significant hearing loss in her right ear. I believe Fiona's deafness in her left ear was unexplained, and the deafness in her right ear was from a condition that caused her bones to calcify, causing problems with the middle ear bones and their functions (so no tumours, or coke bottles for that matter, in this case). Fiona's memoir covers her lifespan, first, describing the challenges she faced in primary school learning to read and struggling to hear her teachers or friends. Next, covering her decision to hide her deafness in job interviews, higher education, and even with her roommates for fear of discrimination. Finally, she shared her feelings and experiences around learning sign language (Auslan) and her acceptance of the increasing hearing loss and painful descriptions of the tinnitus she felt as she became more and more Deaf.
While primarily a memoir, The Shape of Sound also stands as an educational text with information about disability rights, Deaf culture, medical and educational challenges related to hearing loss, discrimination and a variety of other statistical and factual information. It is extremely well written with detailed and personal information while also being a text which can be used to teach about many elements of disability advocacy. I would highly recommend this book for anyone working with people who have disabilities, especially those who are deaf. I would also recommend it to anyone who enjoys learning about different people and their experiences through memoir. It is definitely one of my new favourite memoirs and I'm really glad I got the change to read it! Thanks to NetGalley and the publisher for giving me the chance (and having the patience to wait for me) to read this beautiful book. It has been published so go grab your copy today!
One of the many things that I learned from reading this book was that the reason there are so many variations of sign language is because they were each actually developed separately by deaf people all over the world. She explained several signs in Auslan (a form of sign language used in Australia) and how they tell stories about the places or objects they are describing. She also explained that using English (like signing the letters of words which exist in sign language) is not only tedious but also not appropriate. Sign language is its own language, and using another language to communicate is not necessary and demonstrates a lack of interest in properly learning the language.
I chose this novel (first out of curiosity in the spring, and again last week) because I wanted to know more about how people cope with hearing loss. I learned so much more though about the world around people who are Deaf. The idea that Fiona had to hide her disability because she was afraid of discrimination in all aspects of her life, even at home with her closest friends and family was really troubling to me. There was a caveat in her university course outline that said you must be physically able to complete all of the tasks required in the study of medicine, and even though her disability did make some of these tasks harder, she felt relief that she could pass as non-disabled when other students wouldn't be able to. It's hard to hear that this kind of discrimination still happens in this century. She also said that many people with disabilities do frequent "informal risk assessments' before making requests for accommodations, meaning; they consider the likelihood of being discriminated against every time they consider asking for support from their colleagues and management. Some of the things that would have benefitted Fiona immensely were simple tasks like turning toward her when speaking or allowing her to attend the meetings she was transcribing notes for rather than listening to a recording afterward. The fact that the responses she got when she felt safe enough to request these simple accommodations were responses like "no, try harder"are infuriating. Try harder? Try harder at what? Being less deaf?
Fiona described her own accommodations she made when treating a person who was deaf in her physiotherapy practice. She did things like arrive around the same time, using hand motions, changing vocabulary to words that do not sound like several other similar words, or writing a note. These are such simple accommodations that did not inconvenience her in anyway, but required some simple reflection and forethought. It made me wonder: If everyone who served those with disabilities had their own experiences with disability, perhaps finally treatment would improve.
It also made me angry when I read about the hearing aid commercials and their outright discriminatory descriptions of people who are Deaf. One example was "... we are fighting a way with a large population of Australians (1 in 5) who refuse to seek hearing amplification because they are embarrassed". War? You're fighting a war against people who may not appreciate your product and thus don't purchase it? I don't know for sure why my grandma and dad don't seem to want to wear their hearing aids, but based on Fiona's personal accounts of her own "hearing glasses" (side note: that's actually a thing? I'd never heard of these before reading this book!) and hearing aids, it sounds like amplification may not always be the solution considering the many different types of hearing difficulties.
One might consider the actual war being the war that people with disabilities have to fight when facing discrimination! Fiona explains that the inherent problem with the disability act is that people have to pursue legal action in order to achieve what is rightfully theirs; freedom from discrimination. I hadn't thought much about that before. I'm glad there are disability acts because people deserve to be able to fight for their rights, but shouldn't there be something else that helps prevent them from having to?
Whenever I was alone, I would check and double-check the list of people who knew about my hearing loss - Fiona Murphy, The Shape of Sound
I can relate to these ideas of secrets, not in the sense of deafness, but in relation to my very private approach to my background. I have secrets I struggle to share, and I edit stories, worry about potential questions and try to keep track of who knows what, as strategies to protect myself. In reality these "strategies" are harmful and cause me more anxiety, while also keeping me closed off from potentially positive relationships and interactions.
This quote is a long one, but Fiona just said it so well!
Friendships are cognitively demanding because they are implicit social contracts - in effect, promises of future support. I've started to understand that deafness doesn't have to diminish a relationship, but it should change it. As I begin to to ask my friends if I can sit in a certain chair at a dinner table or even suggest quieter venues, I am continually surprised. Not because they are so instantly accommodating, but because they remember each request. New rituals have folded into friendships - the tables selected are bathed in light; there's a pause prior to everyone sitting, Fi, which seat would you like? - Fiona Murphy, The Shape of Sound
When we hide behind our secrets we don't give our friends and family opportunities to prove their love and care for us because we hide our needs. But suffering in silence because we don't want to take a risk and let someone in is so lonely.
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