#AGBlies and my thoughts on the debate

Yesterday, I wrote a post regarding what has been a topic of conversation in at least some circles – of Nyle DiMarco, the AG Bell Association’s letter regarding his activism in providing deaf children with access to language – specifically ASL. I have read so many eloquent responses to that letter that I wanted to highlight yesterday, but today I have some thoughts that I also want put forth into the void.

This is a conversation that needs to continue. This is a topic that people should be shocked by – the willful, knowing deprivation of language for deaf children for the sake of speech. There is no situation in which this would be considered acceptable for a hearing child, yet it is done every day across our nation with deaf children.

And yet, while those in the Deaf community stress the need for providing ASL to deaf children, I don’t believe that they fully understand the experience of the parents.

In most cases, deaf children are born to hearing parents – Who have no connection to the Deaf community. These parents rely on information provided by the medical professionals that they are referred to upon receiving the diagnosis for their child. And more often than not, these medical professionals view deafness as a pathological condition that needs to be fixed (stark contrast to how the Deaf community looks at it – in that there is nothing WRONG with them, and there is nothing to be fixed). And so the medical professionals send the parents to speech therapists (because speech is still so often equated with language in these circles), and to surgeons who can give them cochlear implants. They are not sent to people who will tell them that there is nothing wrong with their child, that this child can still learn and grow and function even without hearing.

When parents are told that their child has hearing loss, they go through a natural period of grief – they are suddenly faced with the loss of their idea of a normal, healthy child. And when, in the midst of this grief and turmoil, they are told that their child can actually learn to listen and speak, it offers them a lingering hope of (their definition at least) normalcy. So of course they grasp that hope and cling to it. I went through all of this myself. The difference with me was that I suddenly came to a point where I looked at my daughter and realized that she was healthy. She was happy. She knew no different – and there was nothing wrong in her world. She didn’t need to be fixed, she needed to loved and nurtured.

And in the cases where the parent wants to provide their child with language and wants to learn ASL, how many resources are available to them? Baby Sign Language became a fad for awhile, but while it sometimes uses ASL signs, it often uses signs of its own making. It also fails to provide knowledge of sentence structure and grammar of the language – instead relies only on teaching individual signs. Signing Time by Rachael Coleman was an invaluable resource to me that I happened onto by chance – she also is the mother of a deaf daughter. But none of these things teach fluency in a language, and there really were no other resources available to me. College classes, maybe, but the cost is high and it involves a lot more than just studying the language for your child.

So for those who stress the need for deaf children to learn ASL – where are the resources for the parents? They are, mostly, non-existent.

The Deaf community is, from what I’ve see and read, a very close-knit community. They view deaf children as their own (which is partly where the debate over cochlear implants came from). But how much do they reach out to hearing parents of deaf children? They often judge parents choices to use ASL or not, to get cochlear implants for their children, etc., but they don’t reach out, they don’t offer parents their support, they don’t provide parents with resources. And so, as parents, we are left with the advice of the medical community that views deafness as pathological.

Our school system is failing our deaf kids.

Parents are faced with really only two choices when it comes to education. You can mainstream your child, placing them in a classroom with 20+ kids of hearing status and a teacher who knows nothing about teaching a deaf child and their different learning needs. Or, you can send your child to a school for the deaf – most often a residential program, so in our case in North Dakota I would have to send my six year old daughter 4 1/2 hours away. Home-schooling, for most parents, is simply not an option. It is an all or nothing choice for parents. The other issue I’m seeing is that the ToDs use primarily SEE (Signed Exact English) because of the belief that it will raise children’s reading levels.But if it does, it’s only by one grade level or so – we aren’t attacking the real problem. I was told by the school system that upon graduation from high school, my daughter would be reading at a third grade level. What made it worse was that this was told to me as though it were some sort of accomplishment. Using SEE typically only increases that to about a 4th grade level, and then the child has no fluent language they’re being allowed to use. It’s like expecting a child whose first language is English to sit down and read in Spanish.

Speech therapy is not an inherent evil, and doesn’t have to be part of the audism view.

Maybe we were lucky in our experience. Maybe we’re unique in having a speech therapist who said to us at a certain point “You know, she’s just not progressing with speech at this point. Let’s focus on giving her sign language to increase her vocabulary and communication, and then we can come back to speech with her later.” I am proud to have a daughter whose first language is ASL – that is something that I won’t ever take away from her. Speech is viewed by some Deaf people as something that was forced on them at the expense of their own language, and so they refuse to use it even if they’re able to. I can’t fault them for that, and can even understand where they’re coming from. Part of that resentment stems from the “professionals” who believed (and many still do) that speech=language.
Speech is a skill, yes. It does not equate language. But it is not a bad skill to learn. When I look at how few people know ASL (our own family included), and how isolated my daughter has the potential to be, I view the potential ability to use speech as an opportunity for her to be a part of a larger family/community. I can’t see that as being a bad thing.

It’s easy to judge parents. It’s easy to judge based on one’s own experiences (good and bad), or professional training. But most of these people who are making judgments are not parents of a deaf child themselves. They don’t understand the roller coaster of emotion that you go through with that “diagnosis”. They don’t understand the pressure parents are receiving from both sides. They don’t understand the worry that I have that because my husband and I made the choice to get my daughter implanted that she won’t be accepted by the Deaf community. It’s not black and white. We, as parents, are trying to make the best decisions for our children, often with little support and even fewer resources.

So don’t judge. Offer support. Offer encouragement.


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