Inclusivity...At What Cost?

I cannot remain silent any longer. I want to scream, "SHUT UP! STOP!!!," then in the shocked silence that follows, say my piece.

I want to cry. I really do. It's painful for me to go to DeafRead now for so many reasons.

As I write this, I am extremely mindful of the fact that current/future hearing parents of Deaf children may find this post and of the fact that my own people may find this post. I also have to be true to myself and to my center, and that's first and foremost to me. Before I go on, please allow me to articulate a few truisms that are dear to me.

1.    The Deaf community should not be exclusive, and all sides should be open and accepting of each other. I've been loving Jodi Del Dottore's posts – the lady has a sense of humor. This is an example of someone who has decided one way but is very open to learning about the others, and I appreciate her openness. There are several others that I appreciate as well for their openness, respect, and curiosity with healthy questioning. I also believe that most of us are actually already pretty accepting of each other. Almost everyone I know would not reject someone based on their background, hearing aid/implant possession or lack thereof, or signing skill alone.

2.    Hearing parents and non-signing Deaf people are all part of our community and should be welcomed. However, their attitude is crucial. Much like the light-skinned African-American who has erased all traces of his black accent and criticizes darker-skinned African-Americans for using bad English, the non-signing Deaf person who pities signing Deaf people and tells them to work on their speech and/or exhibits any sign of feeling superior is going to get a horrible backlash from the signing community. The light-skinned African-American who sounds more white than black and the non-signing Deaf person who go to their community with bright-eyed curiosity, openness, and acceptance, yet who are comfortable in their own skin are usually going to be welcomed. (note the term "usually." Every group has its small share of jerks who insist on conformity. Don't let those people drag ya down.)

3.    Hearing parents, while they are part of our community and they are usually well-meaning, are not Deaf. They have not experienced what we have. They have not lived with the results of doctors', audiologists', educators' and parents' decisions. The best parents are the ones who realize that and balance that awareness with what they believe to be best for their child. I'm relieved to see that there are some parents from various points on the spectrum who are aware of that, who are actively listening, and asking questions. If only all parents were mindful of that truth…

Now on to my perspective of the furor. I, too, am concerned that DeafRead has lost its center. It really has. Big time.

For one thing, posts used to be clearly labeled with a different color showing whether the blogger is hearing or Deaf. Many people have been asking for this back and there's been no public response from DeafRead, which galls me. It's confusing and frustrating for me to click on one blog, not knowing which is which then having to figure out whether this person is a hearing parent or if it is an oral Deaf person, et cetera. It's not about discrimination. It's about giving me a bit of insight as to the type of center the person has before I read. It helps me orient and prepares me for what the person is trying to say before I read. How is that a bad thing? BRING THE COLORS BACK, DEAFREAD!

For another, I have no quibble with the need to see all perspectives. Of course we do. How else can we grow and learn? However, I've been seeing the CI/oral/AVT perspective for years now, thanks to countless newspaper articles about "success stories," et cetera. I could probably rattle the key points off in my sleep. Melissa has repeatedly pointed out that there is a listserv where people with similar experiences can share. They have a place, which is wonderful. We didn't until a year and a half ago.

Within 18 months, we've lost our place. We no longer have a safe place where we can share and raise our collective consciousness. I was so excited about DeafRead, because it was a place where we could all get together and share in this ongoing dialogue. If not for DeafRead, I would never have "met" Kim/kw, nor Sarah who blogs at the8thnerve.com (link appears to be down?), nor Rebecca's mom, and I'm glad I've gotten to know these three people and many others. Kim and Sarah are Deaf people who do not sign, but they are welcome in the community because they're open, respectful, and curious. They're not looking down on us. I mention this to illustrate that the issue is not about Deaf militancy, rejection of oral deaf, or anything like that. The point here is that we no longer have a central place online that actively values a visu-centric way of life, regardless of language or communication mode. That saddens me.

With the influx of hearing moms' blogs and comments on DeafRead comes a double-edged sword. It personifies "them" into distinct individuals that show so much love and caring for their children that I cannot help but be warmed by that love. I'd believed for a long time that the majority of parents are doing what they honestly believe to be best for their children, regardless of their choices. Many of the blogs/comments are proof of that. Bringing them into the mix gets us all talking and exposes them to our center, our corner of the world. All of this is good. However, there's quite a bit of bad too. Their coming in has generated some pointed comments on all sides and people on all sides becoming defensive as a result. 'Tis human nature, I suppose. Maybe it's a necessary part of the coming-together process that we need to work through.

Another bad aspect of this influx is how our experiences are being dismissed by some of these hearing moms and oral deaf people with/without implants. One thing that is really bothering me is that some, NOT ALL, of these hearing moms are making assumptions and saying things like "my children don't need ASL." Need? Huh? In that one brief sentence, ASL has been relegated to the status of a crutch for oral failures. I take umbrage at that statement and implication. English was my first language and knowing ASL has only enhanced my English. And no, my English was above grade level when I learned ASL, thankyouveddymuch. No one can speak for anyone else when they haven't been through the same thing. We have no right to dismiss anyone's experiences, no matter where they or we are on the continuum. And that's just one of many examples that have cropped up lately on DeafRead.

I, again, want to urge hearing parents to continue to love their children and do what they think is best, but to recognize that we, whether we are a different generation or not, have valid experiences that need to be respected. For example, it's not that easy to be with hearing people who don't sign. It's downright exhausting, in my experience. I got back from a yoga-slash-tai chi class this morning not as relaxed as I could be simply because it is more of an effort for me to use/understand spoken English than it is for me to use signs. _ Much_ more. And every single person I have met who grew up oral has said that they thought they were doing all right until they learned sign language and realized what a difference there is. And these varied and many experiences are being dismissed. We're being told, "Oh, the technology/methodology is better. You're older, so your experiences don't apply." We've heard this for generations now, but the experiences remain remarkably constant. We have lived through this. The hearing moms have not, aside from watching their children. Dialogue is a two-way street here, and I appreciate those of you who are standing up for what you think is right, while listening with respect. Thank you for that.

Part of the issue is having different "centers." One example of how having a different center is important is the term "hard-of-hearing." For someone with a hearing center, the term "a little hard-of-hearing" means to have almost all of his/her hearing, and to just hear slightly less well than a hearing person, while "very hard-of-hearing" means that the person is practically deaf. For a person with a Deaf center, it's the other way around. A person with a Deaf center considers being Deaf quite normal, so someone that's a little bit away from the center is a little hard-of-hearing, while someone who is very hard-of-hearing is further away from the center and has more hearing. And now with the background info out of the way…

…we segue into why I brought up different centers in the first place. We all have different centers. There are those of us who are Deaf-centered, who value BOTH English and ASL (for the record, this ASL-only thing is BS. It's a myth). There are those of us who are hearing-centered, who value English ability, speaking, and listening. There are those of us who are okay with implantation and those of us who are not okay with implantation, even though many of us who are not okay with implantation wouldn't reject someone who has an implant. That's not a bad thing. But if we aren't aware of our different centers, it can impede efforts at dialogue.

One example of this is Melissa, mom of Rachel and Jessica, over at cochlearimplantonline.net. She is clearly a loving mom who worked hard to ensure that Rachel and Jessica are successful, functioning members of the hearing sphere. But when she described Rachel and Jessica's story here ( http://www.cochlearimplantonline.com/index2.php?story), I started crying and I could not stop. I was upset at the idea that Rachel had been through three surgeries and that she'd had to endure processor failure twice without a back-up language/method of communication. Rachel couldn't hear for ten months and there were a lot of struggles with getting the new implants mapped correctly as well as physical pain. I couldn't stand it and bawled my eyes out for hours afterward. I was aghast at the idea of someone going through all this just to speak and listen when they could have had a complete, natural language without physical barriers. I suspect that Melissa and Rachel would be stunned at my becoming upset. They might even scoff. But the thing is, I *understand* their center. I understand that they place a very high premium on speaking, listening, and "being able to be part of the main community." I get that. But do they, and others, get my perspective? I don't think many do. I know some do. And that's an important point.  This is at the crux of our debate/dialogue. Our different centers influence how we see the world. Perhaps knowing this will help us as we continue this dialogue.

Where do we go from here? I honestly don't know. I would never ask DeafRead to boot anyone off, and I shouldn't. But I hope this whole furor will serve as a sharp tap on the shoulder and a reminder of just who the DeafRead base is. We need a safe place. Can DeafRead be that again? I certainly hope so. And hey, now that we're all at the table, let's talk further. Let's listen with respect without being dismissive. Welcome, everyone.

(Note: I'm blogging through pager e-mail since my 'Net access is haphazard at best. Comments have already been set to be moderated and I can't moderate via pager. Please forgive the delay in approving comments. Any insulting comments won't go through, but those that have varying perspectives, showing respect, will.)