Tuesday, July 19, 2011

I remember the family counselor telling me back in 2005 that my deafness affected my life in more ways than I realized. I told him he was nuts. I didn't think that it affected me at all. But on March 30th, 2006, the day that I had the first sudden loss that would transform my entire attitude about deafness, my life was turned upside down in a way that I never anticipated.

For thirty years, I had lived with bad, but stable hearing. I had many negative feelings associated with my hearing loss over those years, but had trained myself to ignore them. I tell people now that during those thirty years, despite the fact that I had a 100 dB hearing loss, I considered myself basically a hearing person that missed a lot of words. I WANTED to be a hearing person. As a child, I was unique in so many ways, deafness just being one of them, and I didn't WANT to be different. I wanted to belong. And so if I missed something that was said, I stuffed the hurt away. If everyone else laughed at the joke, I laughed, too, whether I heard it or not. All the "I'll tell you laters" and "it wasn't that important anyway"...stuffed them deep down inside and let them silently hurt. But I had fooled myself into thinking that I was "normal", that I wasn't really very different from anyone else. 

I still have this desire to belong, but it's different now. I still, quite often, feel a lack of connection to people that can hear, since they, for the most part, don't seem to be able to grasp my communication difficulties, and to be honest, I still don't always understand what they're saying. Most of the time they treat me like the person that I wanted to be and pretended to be for years...a hearing person that just sometimes misses some words. But somehow over the past few years my identity has changed and I no longer want to be seen as a hearing person who sometimes misses words: I want to be seen as a deaf person. At some point I became not only comfortable with who I was but proud of it, calm in the realization that deaf is not better or worse, but simply different. At some point I became not just accepting of my deafness but fiercely owning it: demanding for it to be seen and acknowledged, a take-it-or-leave-it attitude. Which side of the fence do you stand on? Can you accept the fact that I don't hear well? Can you not only acknowledge that I'm deaf, but deal with it and make the changes to help me, and others like me, overcome the communication barriers? And for the people, hearing or deaf, that say, "I embrace that about you, let's take it and roll with it", I feel at home. But I feel an especially deep sense of kinship with others who live it, who have been through the same journey I have and have come out on the other side bruised and battered a bit, perhaps, but who have kept their hearts strong and kind and generous and willing to lend a hand to others who are just beginning the trip. I don't even really like the term "hard of hearing"...that seems to me to be a cop-out, a "not quite deaf" statement. I'm deaf. My ears have very few, if any, living cells in them that work...they have all been mown down by a shiny electrode array. I only hear when the magnet clings to the side of my head and a string of binary code cascades through the electrode, producing electrical impulses that, almost miraculously, my brain interprets as sound. My ears look perfect, but they serve no other function, really, than to hold a processor and perhaps the arms of my reading glasses. And a lot of people shy away from deafness...it seems to be something to be feared, something to be ashamed of, something to be tiptoed around. I wish that all of that could be pushed away and that hearing loss....deafness...could be seen for what it is, something that affects one in THREE people by the age of 65. It's not something to be ashamed of or afraid of or something to hide. It's very real, it's very common, and there are a lot of people with hearing loss who miss out on the world around them every day because of stigma and shame. 

I wouldn't be hearing again now...too much of who I am now is wrapped up inside a deaf identity. I believe that this is who I was meant to be, and that there's a purpose for this, so I accept and embrace the fact that this is who I am, and try to educate those around me about the fact that inside, we're people just like you are, people who want to be accepted and involved and needed  just like everyone else. We are going to miss a lot of things that you say. We don't want to....we don't choose to. We need you to meet us halfway. We don't advocate for ourselves to be pushy and loud and rude and obnoxious. We advocate for ourselves because we want to share this amazing thing called Life with you, and occasionally, if you don't stand up for yourself, nobody is going to stand up for you. We just want you to be aware that we don't hear. We have a lot to offer, but we don't always hear. Silence and shame and invisibility doesn't benefit anyone. Can you hear us? Are you listening?