The Silence of Deafness is an Abstract, not an Absolute.
So I find most days I have to explain to people about my hearing, and it nearly always doesnt work in the sence that I can say the official title of my hearing loss is, ‘Severely deaf’, and yet I can answer people when they talk to me!
As I have explained before, Im neither completely deaf or completely hearing, im severely deaf, thats the title, and yet when I answer someone who asks me a question there like, WTF?? I thought you were deaf!! Deaf awarness is the problem, or the lack thereof! I have bilateral hearing aids, I lipread, and I sign only a tiny bit, my Lipreading is my main means of communication, my speach and voice sounds like that of a hearing person….but Im not! I cant hear a lot of things, and with that EVERY DAYYYY without fail I find myself like a broken record explaining, that I understand what you say and I can talk but I cant HEAR you!! People cant seem to understand that! and the days your tired and cant concentrate on lipreading and they ask you questions and you cant answer them, their like, I thought you said you could understand me and today you cant?? People actually think I make it up! But I dont, I suffer, and Sometimes its enough to make you want to lock yourself away, but you cant because life goes on and tough shit!
If we all cant learn to understand that deaf is deaf HOH is HOH and yes we actually can in a way all be lumped in together as a group and get on with it, but no…I see it so much, mainly in the Deaf community itself, that Profoundly deaf people dont want to know you if you can speak, that means you can hear and your not the same as them!!… Actually my situation can be worse, I believe, and this is a horrible thing to say but sometimes iit can be true: ‘What you never had you never miss’
Now this is only a small minority of deaf people im talking about here, the most iv met and spoken to are lovely and im mad about them, but there are those few, and it makes no sence to me, why anyone should be treated differently for any reason!
I had perfect hearing, and now I dont and I have had to adjust and its a much harder thing and it messes you up, and the fact that some people dont want to understand is so upsetting.
Im in the middle of all this, I have no rock to call my own, Im neither completely deaf or completely hearing, no doctor, no interpreter, no person, can understand unless they have had this proplem, and so few do… Iv spoken to people online to you lot and its great to discuss the problems on here because ye understand, but in real life iv only ever met, HOH people or profoundly deaf people, no one like me in the middle. I have no one to truely Understand…I have people to talk to about it, Keith is the best in the world, but sometimes I feel so isolated and even though it seems like im doing so well and understand everything, the truth is sometimes I cant, and sometimes I just want to be on my own. Most days it doesnt bother me, but other days it does, and theres nothing I can do about that! Its up to other people to understand, not me, im the one who has to live with it already, why should I have to to change any more, iv enough adjustments to make!
Yet there is a part of me who wonders should I just be deaf, as in only use sign, but that wouldnt be the truth, I can hear little things, and I lipread really well, and im well able to speak, so NO I dont need to send myself to a group because it bothers other people!
Yet there is a danger of me waking one day soon and ill have no hearing at all… I cant lie anymore it does scare me, it scares the living shit out of me, and yet if it happens I know ill adjust again, and get on with it, but still I cant help feeling scared about loosing the hearing I have left. I have had hearing, and loosing it is a big deal… I have adjusted this far, but could I really live without Music, Keiths voice, My families voices, birdies, everything we take for granted…
Im sure I could but it would be so hard, I am loosing frequencies on a regular basis, and im trying so hard to deal with it, and adjust…. but will there be a time where I cant adjust anymore? what then?
Currently im involved in the Deaf Community Center in Limerick, and they are great, Sandra there so so nice and I feel like for once I have a place in the deaf community where im actually accepted for the problems I have, everyone is welcome there, and everyone gets on, no matter how severe, profound or mild your hearing problems are…I feel more people and places have to take that attitude.
I for one would welcome it with open arms.
The URL below links to an article which describes a case taken against an organisation for refusing to accept relay calls, who also didn’t provide a TTY number for customers to use. For those of you who don’t use telephones for voice it may be a useful reference.
http://www.nad.org/site/pp.asp?c=foINKQMBF&b=1153171
I don’t know if there have been similar cases anywhere else, but if anyone knows of any, shove them in comments for archives purposes.
It’s funny, but the few places in the city that I experience the worst discrimination, are the places where I go to have my hearing loss treated. Audiologists, and ENT doctors.
Normal businesses and doctor’s offices, when I speak to the doctor or the receptionist, they listen to me and respond. Sometimes they don’t quite know how to speak to me so that I’ll understand, but with a little bit of fumbling around and maybe discovering we need a notebook to communicate… Generally after about 5 minutes, we’re up and running with a system that works for us.
Then I go to the audiologist, and instead of that initial fumbling around to discover what works? I experience something far worse. Either the audiologist, building workers, and receptionists speak to whomever is accompanying me to my appointment, or they treat me as if I’m an elderly person- slightly pixelated. I always feel as if I’m a cat going to the vet’s instead of a human being going for treatment. I’m subjected to the bare minimum amount of communication and direction, and when I ask questions, I’m often given overly simplistic answers- or my questions, concerns, and suggestions are dismissed. Almost as if I were a schizophrenic babbling about voices that only I could hear.? But I’m not. I’m talking about my hearing loss, my? needs, the limitations of the devices that they are adjusting- and I’m suggesting things that I think could circumvent those limitations.
Instead of listening, they sort of zone out. And the Deaf workers there? They have their own Deaf agenda, and it has no room for anyone who circumnavigates the world in a way that doesn’t fit in with the Deaf way of doing things.
It’s sort of ironic that the one place in the city where I’m constantly reminded of my status as a second-class disabled person, is the one place in the city where I’m least expecting to encounter that.
A few months ago, I learned of a new technology called CapTel - basically a special phone that provides live captioning unbeknownst to the party on the other line. I’ve tried VCO and relays in the past, but was never comfortable with the unnatural flow of the communication. Now there’s this CapTel that would solve every phonephobia I ever had - BUT…it was not being offered in Michigan.
Feeling cheated, I began writing to the Michigan Public Service Commission, stating all the reasons I felt our state needed to jump on the CapTel wagon. Responses started coming in, asking me to write more letters to more people - that I did. Letter after letter, not knowing if I was even making a dent - but adamently refusing to be silent with my demand.
Just today, I read an article on Michigan’s gov’t website stating that CapTel has finally received the greenlight from the MPSC - a decision reached from reading JUST 20 LETTERS.
The lesson I learned: don’t be silent about what you need. It won’t happen unless you ask for it - speak up!
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