Putting all self pity aside, it really has been a kind of hell. I’m getting ready to turn 62 and just in the last five years I’ve pretty much figured out what the problems are and have been my whole life. I’ve no high frequency hearing at all above 1500 hz; about 30 db loss below that. Hearing aids have simply never helped significantly enough to put up with them. My voc rehab people have told me I probably wouldn’t have much luck going for a CI because my strategy from here in is to avoid working if I can (currently on SSDI, ended up in a psych ward a few years ago). The truth is, I just can’t stand to do any more janitorial work. No more lectures about how anyone can do anything, if you please.
After four very intense years of psycho-therapy (but in and out of therapy 30 years) and a couple years at high risk of suicide from ptsd, I’ve come to terms with what happened. At about 2 years I lost most of my hearing from scarlet fever. Both my parents, apparently, completely went off the rails and could not handle it. Though I was kept alive, like you keep a lab rat alive, the emotional stuff that came out during the entire childhood basically had the effect of actually stripping away my own ability to fend for myself. Just about a year ago I summed up my life with some clarity – I’ve been like a mouse trying to scurry out of a bathtub my whole life. I couldn’t find anything to get traction and scurrying faster and harder did not help.
What I understand now is that, psychologically, we live in a society that is based in domination, competition, and emasculation. If you don’t believe me, I invite you to spend at least 30 minutes just studying the founding, infrastructure, and processes of thriving that we do as an American society. Or said another way, how we were built on genocide, slavery, land theft, and domination of the global landscape. I’m not saying this to depress anyone. I’m saying this to state a fact, which is anything that interferes with someone’s ability to compete in such a culture is going to have serious consequences. Or without naming any names, my next to last therapist who incidentally specialized in deafness, who helped me a lot, once confided that she felt 90% of her deaf clients were dealing with some level of ptsd. That is not something to take lightly.
While I admire all the assertive talk and action around people of any disability taking the bull by the horns and integrating themselves into such a society, there are many of us who were so maligned that there comes a time that the plain truth is more powerful than anything, just the sheer validation and vindication of it. When I look at American society, the one that MLK called “a sick society” many times, I am left wondering where my place is within it at all. That’s the truth. From what I can tell, the deaf population has been completely marginalized from mainstream society. I simply cannot assert myself in any social situation; I simply cannot follow what’s going on around me with hearing people involved. Whether we can come to terms with that fact or not, at some point we have to admit that we’ve all set it up that way. But in this case, almost all the power to do that rests with the hearing world.
I have a problem I’ve not heard anyone else having. That is asking people to speak up for me anymore. I’ve done it so much over my life I can’t do it anymore; it feels like begging now. People have to be reminded 20-30 times to look at me when they talk; it is too exhausting. Another problem I have is that I set out to learn sign language four times over the last 15 years and I could not do it. I’m a smart guy; I could not figure out why. What came out in therapy was that I resented having to learn another language just because of the deafness. I’d never heard another person with that problem. When you think about it, it is outrageous. It is perfectly feasible for the hearing world to communicate with us deaf, it would only require perhaps some minor additions to the education process and perhaps a simple social convention or two, but it is perfectly feasible without them having to learn signing, especially with all the gizmos nowadays.
I’m not writing all this to bring anyone down. Some of you truly inspire me. But I believe there are reasons why the best librarians at Denver Public Library (one of the better libraries in the world) can’t find any significant statistics on deafness in the U.S. It is because our society has a massive blind spot when it comes to the deaf population that no one wants to talk about. It’s as if the hearing world must stamp out deafness like stamping out mental illness or polio or something. I’m just speaking out that I think it all sucks; that it is outrageous. This is my last hurrah.
What have I learned? What do I recommend? First, that human beings are not very nice animals. And that should be told to people up front who have whatever condition they have to deal with in this society. Second, that those of us unlucky enough to have to deal with this are not cute, we are not novelties, and we are not inferior. And I wish I was told clearly what MLK’s father told him when he was young and they first experienced discrimination because of their blackness. He set him down and told him EXACTLY what was happening, what was going to happen the rest of his life, and that NONE OF IT SHOULD be happening. Apparently it took. Third, that I am a child of god, regardless of what my parents thought, what my family thought, and what my school system thought, and regardless of what this society based in domination thinks. There are simply things that happen to me that I will never be able to gain control over in terms of communication, but I can overcome the effects of that by developing ways to control and dominate things in my own life that are affirming, constructive, and meaningful to me.
To any young person who might read this I would say that if your loss is so great that it really affects your ability to engage in work, school, socializing, or self promotion in any way in a hearing world, I think the best advice is to choose the kinds of demands you will place on yourself – and then make them work for you. Do it that way rather than what I did, that is, frantically trying to fit into a world that had no intention of allowing me to fit into it. And if you can’t get enough personal support and morale support, DO NOT give up on that. Make it your priority throughout life.