Wednesday, March 09, 2005

Let's talk about deaf baby! Let's talk about you and me! la la

For those that are hearing, my post title has been modified from a former song "Let's talk about sex."

Okay let's get it out into the open. I have had several people ask me how I feel about going deaf. I am writing about it now because I am inspired to do so.

First of all, it is not nearly as bad as I had originally envisioned it would be. There have been pluses and minuses and my life has been altered but also enhanced in many ways. Mainly I have had a chance to gain valuable insight and a perspective that neither Deaf nor Hearing could truly understand. It is as if I am a scientist in a lab looking in on the Deaf and Hearing worlds through a microscope lens.

Although, like the scientist in the lab, it becomes challenging to interact with these two entities at times because you really belong fully to neither.

First let me address the challenges I have encountered when dealing with the hearing culture as a late deafened adult. Please do not be offended but understand that these are true observations and difficulties I have encountered with the hearing. I am heavily surprised by the ignorance of people! I am sure that I too was just as ignorant when I was hearing but I hope to God I never offended a deaf person in the ways I have felt offended or know a Deaf person would find offensive!

Here are my two biggest irritations and if you know me please do not ask me these things:

Do you read lips? (then proceed to blab when I informed you that I would like you to please write down what you are saying)
Do you need an ASL interpreter? (or don't ask but just assume that I am completely fluent)

First of all hearing people, let's assume that I was born deaf. Even then with the very best of oral training, realistically I would only be able to read about 20-30% of spoken conversation on the lips. Most words cannot be seen! When I still had residual hearing in the spring I scored remarkably high with a 44% in speech reading capability while my speech discrimination without reading lips was 0%. The reason mine was higher is because I was born hearing and could hear spoken words for so long! I took whatever residual hearing I had and combined it with the shape of a speakers mouth to try to decipher what they were saying. It was very frustrating! Now however, I do not have any residual hearing and speech reading is much more difficult. It is mostly a game of predictability. For instance, when I go to the same grocery store and know the people I know what they are going to say or ask me because it is always the same! "How are you today?" "Do you have your club card?" "What is your phone number?" "Do you want paper or plastic?" "Would you like help out?" "Thanks and have a nice night or day."

Notice that all those statements are rather short, sweet and are obvious. They are not babbling about some story of a topic I have no idea about! Speech reading also depends on many other factors such as whether you know the person well and have read their lips before (like my husband), if the person has a mustache, if the person does not move their lips much, if the person has nice big lips and big lip movement, and for hard of hearing people it makes it much more difficult when there are background noises and distractions (restaurants and screaming kids are very stressful situations for hard of hearing people).

Sure we have all heard of Deaf people with an amazing lip reading (accurately termed "speech reading") ability but that is like on TV. So do you believe in everything you see in the media? I have heard of one woman who claims 80-90% speech reading capability but that is really a true gift and oddity. How common are geniuses born in our society? There you have it then!

Okay, now for those who are hearing I want you to consider for a moment that you have instantly become deaf. You just woke up one morning and lost your hearing. Now tell me that you would like an ASL interpreter for your morning meeting at work. Then sit there completely lost, frustrated, and confused as if you are trapped in a dang box for that hour with no way out! Sounds ridiculous doesn't it? Yet you would not believe how many hearing people have assumed I needed an ASL interpreter when they have been informed I just lost my hearing. Or, people assume I am fluent and will enjoy myself at an ASL interpreted performance where I cannot hear squat just because I am deaf and took a few asl classes

News flash, for those that do not know, ASL is a FOREIGN LANGUAGE! It is NOT merely english signed on the hands. It has a completely different grammatical structure just as French, Spanish, and German do when compared to English. Also, there are many bits of grammar thrown out in ASL such as prepositions and things like "The, And, A, etc.". Instead of using those words, signers change the movement and dramatization of their sign. So even after having 5 ASL classes I still have a long way to go. Due to the heavy influence and usage of English in my level of education, I tend to use more of what is called "PIDGIN" sign which is neither ASL nor English. It is sign used in grammatical English order but more or less fragments to express an idea. Sign Language in English grammatical order is called SEE "Signing Exact English" and it is quite laborious and irritating. So think of it this way, if you have ever taken a foreign language, were you completely fluent and proficient in the language within a year, 2 years? Probably not unless you moved to the country and completely immersed yourself in the culture.

Okay here is one more gripe before I touch on the positive side. This is more of an inconvience to me that I have to learn to deal with. When I was hearing I was afforded so many priveledges and opportunities that I really was somewhat unaware of. I knew they existed but did not realize the priveledge that came with it. All over it seems like you can go to some kind of seminar or workshop on anything that picques your interest....from hobbies such as pottery and yoga to medical education seminars and environmental classes at zoos. Often I will forget about being deaf and think of how I might like to attend something like that. However, now I always have to stop and think. If it is some form of lecture I will not be able to hear and I will need a real time captioner which can be costly. If the organization is nonprofit, small, or a local community center they are not obligated to provide accommodations. That really stinks! So all these things I would have liked to attend and learn about I can no longer participate in unless it is something visual and someone can write some things down for me. Depending on someone to write things down does not always work well either.

However, there have been seminars and workshops that I have attended for my career while as a graduate student and the places did fall under the ADA law of accommodation. Yet often I find these organizations are not aware of this and it is a big hassle to try to get what I need. I find I have to prepare months in advance because it often involves a great deal of leg work on my part researching the organization and law and trying to find somebody available to caption for me.

At one point before I went deaf and could understand somewhat with an FM system, I went to a National Biology Teacher's Conference where they failed me. For months I tried setting up a captioner but the conference was out of state and I only knew of captioners in state. Plus the main organization running the conference was based out of the east coast and nobody was returning my messages until 2-3 days prior to the conference! I knew at that point there was no way they were going to get a captioner like I had requested. So they lined up to have room FM systems installed. When I got there they provided the wrong equipment. Then I had to wait around and miss some seminars I wanted to attend while they hunted for what I really needed (which I did state before attending!). It turns out that none of the equipment they provided worked! Luckily I had my own fm system and I mainly went to labs instead where I could work with a partner who wrote things down for me on what we were doing. But the situation severely limited what I could participate in and had access to as compared to my hearing peers.

Therefore, when I want to go somewhere, it has to be totally planned and thought out in advance. I cannot merely show up on the spur of the moment as was my style as a hearing person. Once I am committed I cannot back out. Twice now, I have gone to job interviews over the summer where I requested a real time captioner and the employer provided an asl interpreter instead.

OKAY! NOW ON TO THE LIGHTER SIDE OF THINGS! I believe in bursting your bubble first and then filling your bucket! LOL ;o)

The one thing I think I have really gained through the deafness is more of a sense of focus whereas I was more easily distracted before. This really helped me through graduate school because there was so much reading and writing. I have really learned to appreciate reading alot more. Sure I love music! In fact that was probably one of my biggest time wasters! I would be listening to it all the time and was the type of person that had to get the lyrics and follow along. In my undergraduate program I remember sitting around and listening to lots of music when I should have been putting my nose to the grindstone in my studies. It was a rare moment that I was not listening to music. In high school I would listen to headphones on the way to cross country and track meets and I listened to my stereo throughout the whole night while sleeping.

Music is great but I think in many ways it can contribute to depression and unmotivation (I am not talking about performers as they are very motivated) depending upon your selection.

Another thing I have learned is that often alot of spoken conversation can be very meaningless and mundane. I first learned this lesson on a geology field trip where everyone was sitting around the campfire telling jokes. I was rather irritated because I could not be included. So I thought about it for a long time and then realized that I really was not missing out on anything important really (maybe some comradery among fellow geology students??). For a long time it bothered me not to get every bit of conversation or what was said. Now in a lecture this still holds true because it is informative material but for everyday conversation I find what most people choose to talk about is really irrelevant. Therefore, I have sort of learned to not waste time with such matters and to occupy myself with more important things or people who want to communicate with me through writing or signing.

In addition to the focus, I must say that it has been kind of nice to filter out the noises that the hearing become very irritated or distracted by. Before I could just shut off my hearing aide. For example, during grad school our small lounge was packed and noisy at lunch time. Yet I was able to kick back and take a nap or study without any problem. Also, sometimes when you are in a store or restaurant somebody's kid starts screaming at the top of their lungs an ear piercing scream. Ahh no longer! I can continue to enjoy my shopping or dinning pleasure in silence. I can now also enjoy noisy establishments whereas it becomes challenging for the hearing! And it is great to hold a conversation in sign while eating where as you have to stop if you are talking.

In many ways it is rather peaceful and a relief. I feel rather lucky having been a hearing person before because I know how people are supposed to be treated and now that I am deaf I see how often Deaf people are mistreated. This makes me angry but also very assertive and that is probably what surprises people when I speak up and I am defiant! Recently I had an opthamalogy clinic deny me accommodations for a serious medical consultation. The dang boob wanted me to come in for an evaluation of my disability and how I can communicate without an accommodation before he would give me an eye exam. Pardon my french, but that is the most assining thing I have ever heard! I asked if they even ever had deaf clients before. Surprisingly they did and the patients paid for their own accommodations which was totally wrong and against the law! They expected me to do the same but I would not cave in so I sought a more appropriate and better doctor anyhow. I am still in the process of filing a complaint on that organization with the human rights commission.

Let's switch back the music. I was really sad for some time about losing the music because when I had cancer back in 1992/1993 I used to listen to music to meditate and visualize the tumors shrinking. Now I have felt kind of stuck and often my life is very noisy because I have something called tinnitus (which is ringing of the ears and takes on different annoying sounds at times). Since I could not listen to music I did not know how I could get into a meditative mode and envision my tumors shrinking. It made me feel very trapped and not in control of what was going on.

I was feeling this way about a month ago when I opened a fabulous poetry book that my mother gave to me by Helen Steiner Rice - "A Collection of Love Gifts". Surprisingly the book opened to a page with a poem titled "The Peace of Meditation". I will include it in a seperate post for those who just want to read the poem. After reading the poem, I realized that I have had this gift in me all along to reach the silence and and deeply contemplate or absorb thought. While growing up I used to always take a walk on our back property in the woods to my favorite spot. At the edge of a hill overlooking a lowland mossy area, the afternoon/evening sun would shine through the tall hemlock trees just perfectly. It was in this spiritual place that I used to sit, think and pray in silence. I had forgotten about the peace and solitude I achieved there until this poem reawakened me.

So for now I will leave you with an additional post of the poem and it may clarify how I am coming to embrace this deafness.

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