As a critical reader of media, I find myself left with a lot of questions after reading the article entitled “Deep Division on Deafness” in journalgazette.net (based in Fort Wayne, Indiana) regarding HB 1367. These questions are not meant to point out fault in the story itself, but to bring these questions before the community.
I ask you this: What “distrust” exactly (as stated in the article) runs deep on “both sides?”
While over 90% of parents of deaf children are themselves hearing, deafness itself is not widespread, which is why a great many hearing people have never even met another deaf person in their lives. Isn’t it at least somewhat safe to assume that many of these hearing parents of deaf children also fit into this category?
So if they’ve never met another deaf person, what reason do they have to distrust the deaf community?
It’s not like these parents find out their child is deaf, go on the internet, discover a deaf community sharply divided between the oral and ASL-using camps, panic, and somehow decide they’ll embrace the oral camp while never trusting any single living ASL-using deaf person ever again. Doesn’t such a supposition seem ridiculous to you at the very outset?
What’s much more likely is that these parents come to suspect deafness and go to a doctor. Not the deaf community. This isn’t because they harbor some sort of resentment against the deaf community, not yet. But deafness is lumped (by the world at large) into the classification of medical maladies, and doctors resolve those, so off to the doctor they go.
Let’s pause here now, and ask again—the distrust is deep on both sides? If so, there’s no way that can be possible at this point. The deaf community hasn’t even entered the picture yet!
And neither has bias… not on the part of the deaf community (keep in mind, bias on ISD’s part has never been proven, but that doesn’t really matter, does it?). If most of Indiana’s deaf students already attend their home districts, and all of them went through ISD’s outreach center, that result makes a great case for the lack of bias on ISD’s part, wouldn’t you say? And if they didn’t, how much damage can this outreach center be doing, really?
If anyone has a real reason to distrust anyone, many in the deaf community have a reason to distrust the medical/oral-only establishment. Many of us have boxes containing useless hearing aids shoved in the back of our desk drawers to prove it. We have school memories that border on PTSD flashbacks to prove it. We come from families in which we never did and still don’t have easy, meaningful language access. We come from schools and towns in which we never did and still don’t have any friends, because we were the only deaf person in the area and were shunned because of it. Of course, not everyone in the deaf community will say this, but many of us can.
And I wonder if that isn’t really the heart of the issue here. That truth. What if, in all of these claims about “bias,” what this is really about is denial?
The answer that the medical/oral-only establishment has for me, a deaf human being, is that I’m supposed to get fitted for a hearing aid. If I’m a candidate (I probably am), I’m supposed to get a cochlear implant. I’m supposed to keep up on my speech therapy so people can understand me. I’m supposed to learn to read lips so I can understand other people in those gaps where my hearing aid or implant doesn’t work. And that’s it.
But that’s not it.
That hearing aid doesn’t work for me. And it doesn’t work for a lot of deaf people I know. I don’t want that implant because I don’t want to find out the “miracle” is really a “dud.” I don’t want speech therapy (my speech is fine, by the way) and I don’t want to learn to read lips because I believe the creation of communication access is a two-way street. The expectation of medical and oral approaches is that I learn to do this; that I learn to do that. My response is a different question: “What do you have to do?”
That’s not attitude, it’s not hatred of hearing people, it’s not arrogance, it’s not bitterness or anger, it’s not feeling sorry for myself, or being a victim; it’s not a dysfunctional desire to live in a Deaf Ghetto or a Deaf Wonderland Bubble, and it’s not Deaf Pride.
I don’t need to be biased, and neither does any deaf person (or hearing ASL-supporter) working at ISD. I just need to exist. I am living, breathing, walking evidence that the answer the medical/oral-only establishment has doesn’t fit everyone. I’m a problem, an anomaly, an affront. In a way, I’m the confession nobody wants to make.
I think that if a hearing parent distrusts me at all, he distrusts me because somewhere between his trip to the audiologist and his journey to find a suitable school for his son or daughter, he meets me and he senses my exhaustion. He senses that someone or something has failed me, has hurt me, has perpetually placed me on guard, has made me worried about things nobody should have to worry about (such as whether or not I’ll easily be able to find a job when I have to, or whether or not my hearing family or friends will choose to remain in the presence of the communication “burden” some might perceive me to be).
He sees me and what he really fears is whatever it was that did this to me and caused me to feel this way, but he can’t define that thing. He can’t give it form or substance. So he settles for me. He settles for my form, my substance. And then he gets as far away from me as he can, and takes his child with him, looking back at me as if he fears I might pursue him or something.
Meanwhile—this was before I developed the insights I have today—I’m wondering what the hell is wrong with him.
The situation in Indiana is ridiculous and frustrating and maddening on every level imaginable for me. Do you want to know why? The nineteenth century belonged largely to medical approaches and oralism. The twentieth century largely belonged to medical approaches and oralism. The destruction left in the wake of two centuries of medical approaches and oralism is akin to a Grand Canyon-sized scar scoured across the face of my community.
To the core of my heart, I am sick to death of medical approaches and oralism. I’m sick to death of them even though, as a researcher, I have to admit they can benefit X number of people.
I’m sick to death with fear for deaf human beings these approaches won’t benefit.
HB 1367 isn’t about a mere outreach center for me.
It’s about making sure that the twenty-first century is about sanity.