A DeafBlind Woman's Book Rejection

I woke up this morning and after my chores, I sat with my coffee to scroll social media. I read a man's long post sharing his wife's book about their deaf son.

I was so shocked and furious that I almost dropped my coffee. If you know me - that's not a good thing as it takes a lot to rattle me.

The Book

The book is "Hearing Louis: A guide to managing your child's hearing loss". Available only on Amazon in Australia.

While I have not personally read the book, the husband's description, the reviews, and the overall narrative are sufficient for me to raise concerns on behalf of the Deaf community.

Let me post some excerpts from the husband's post and my running narrative to illustrate the points I'm making:

"Louis, our 21 year old son, is deaf and uses bilateral cochlear implants to hear"

Nothing wrong with that, I have a CI myself.

"...now he lives as a fully functioning, hearing, speaking, well adjusted young man."

So, Deaf people who can't benefit from technology because it doesn't work for them, who can't speak and so on and on are "abnormal"? Deaf people who fit this category have been labeled "oral failures" to their faces.

"...this book explores hearing tests, therapies, procedures, and equipment that could arguably give your child the best opportity to thrive in a 'hearing world'".

And if none of this works, how do you envision parents seeing their child? Rejection? A failure? The child didn't try hard enough? Believe me many of us have been through this and asked "what am I doing wrong"?

"It is a tribute to the talented hearing professionals and the cochlear devices that enabled Louis to hear and speak well".

Key words here "hearing professionals". The Deaf community has a sarcastic microagressive (laden with trauma) response - "Hearing know best". This comes from the hearing community frequently dismissing the knowledge and expertise of Deaf individuals and the Deaf community.

Throughout history and in our daily lives, Deaf people have been chastised "Because we the hearing people are the normal ones and we know what's best for you". I suggest reading "Seeing Voices" by Oliver Sacks for a look into Deaf history and ASL.

When parents of deaf children ask for advice on how to raise their deaf child, the Deaf community will openly give that advice. But we get backlash because it doesn't meld with the parent's comfort zone. (Read that as "too much work to learn to sign"). People forget Deaf adults were once deaf children and we've literally been through this!

I once had a mother of a deafblind child coldly tell me right to my face "My child will never be like you!" Well ma'am, quite bluntly, you're missing out *smirk*.

Book Reviews

Some book review excerpts:

"Must read for parents of children with hearing impairments"

If you read my other post, When Writing about Disabilities, you know "Hearing Impairment" is offensive to many in the Deaf Community.

"...not only does it provide a great overview of the world they are being thrust into, it also gives hope for a very bright future".

Again, setting deaf children up for failure with parent's high expectations. Plus, what does this person know about the "world they're being thrust into"?

Facebook Comments

Let's see some of what other commenters said on this post:

"This goes against everything that Deaf people try to fight for on a daily basis".

"I was shocked by the whole description of the book! From impairment to now my child is normal you would never guess he is deaf. the only way I would touch this book is to toss it in a fire!"

"...this isn't about differing points of view, this is about a sick need to fix a deaf child instead of just accepting who they are. And let's not forget Mark who ended his life last week because his parents didn't accept him for who he was and years of feeling he wasn't good enough".

This refers to Mark Kozyk, a Deaf gay man who ended his life recently. His family never learned to sign and he endured years of frustration, language deprivation, loneliness, and yearning for connection. His last social media post said "Communication is valuable in our lives. Language is a love code."

So, bluntly, many Deaf people equate family not learning their language as not loving them. It's as simple as that.

My Personal Response

Here's the rest of my response to that Facebook post:

It's great that Louis is "normal", but that's a pretty rare occurrence.

Also as a parent you don't see his life fully, just what he tells you & what you see when he's around. Because even fully aided - he's missing things: group meetings or chats can be overwelming to follow, microaggressions by others when he misses something, etc. etc.

I understand where you are share with other parents your experiences, but please be careful that 1) You're giving parents highly unrealistic esxpectations & 2) Deaf people are going to feel angry because you've opened old wounds of years and years of aural therapy, speech therapy, doctors appointments, and upset family members because we couldn't be "normal".

Sincerely, a DeafBlind woman who can speak with a CI that enables sound & some words but still considred "broken" by the medical community, the general public, and some family.

Learn sign language, that's 100% accessible.

Let's Hit it Home

It's not about "fitting in" - the Deaf community has many life hacks to do this.

It's about our visual language for communication, connection, feeling loved, having deep talks...

...being included.

As a good friend said "ASL is Oxygen".