Unrealistic Expectations from the World? Audism?

What do people expect from me? They expect me to participate in social activities and to be part of the “common consciousness”. That is a fair expectation in my opinion. In this blog post I want to take a look at some circumstances and  obstacles concerning these expectations. I think it will be wise to read the definition of some of the words I use, they are Prayer-no-expectationlinked, as the word “expectation” was just linked.. That way we will be on the “same page”.

In this aspect I am thinking about what we expect and when we expect it in terms of my hearing progress. This is also a sore and difficult point on my behalf, since it is much about social interaction and how I am perceived socially. How I am viewed as a person.

As I’m going the path of CI rehabilitation and re-learning to hear, I am doing some discoveries about expectations of my recovery from both myself and others near and dear.

Me, a social outsider

All my life I’ve been a part of the hearing world, and thus a social outsider. Even among my closest friends and family, I got and still get, remarks and comments that hurt to the core of my being. I’m sometimes left with a feeling that people suspect me of WANTING to be isolated or withdrawn from issues that are talked about. I often feel misunderstood and misinterpreted. For instance my withdrawal from social events is sometimes being interpreted as a lack of interest, or attempt to socialize. That is so unfair and sad. I’ll explain why…

The more people talking at the same time, the more impossible it is for me to interact in a meaningful way. Believe me when I say I really wish I was able to interact with others on their terms, but there is a huge damage in my hearing that makes that incredibly hard. There is a limit to everyone’s mental capacity and endurance. My limit is shorter than most in terms of social interaction due to the nature of listening and understanding.

The improvements

It is a dramatic improvement I am experiencing in terms of frequency range I’m able to hear. No doubt about that. It is also a fairly decent improvement in getting less fatigue and more awake in my brain. (due to the elimination of stress related to the “recruitment” phenomenon)

Many other stress-related health-issues are improving and slowly dissipating, in my opinion. These are muscle-skeletal irregularities, psychological disturbances such as sleep disorder, aggressiveness, irritation or other irrational behavior, mental issues such as concentration, short term memory skills etc etc. This leads to hope and more expectations.

And I hail the CI as miraculous to my friends and family because of this. This might, it turns out, be the root of too high expectations and a collision between these and the actual reality of it all.

improve With one ear, it is both hard to isolate one voice in the 3 dimensional sound-landscape of several voices. Easier with two implanted ears, I’m quite convinced, but with one, it’s a real disadvantage. So the fact is that two or more simultaneous conversations disables me in a social context, even though I’ve been “repaired” with a CI. I suspect it will take fairly long time before my brain can utilize two working ears too…. Time will tell.

Then add to that, my brain is still rewiring the frequencies, especially the deeper bass, which has been left unused by the electrodes (the electrode array can’t reach all they way in, thus disabling the frequencies in which I actually had a residual hearing before the implant. I’m in my 7th month post-activation, and have discovered/heard real and subjectively felt radical improvement in speech comprehension. I can listen to radio in the car, and get most of the news broadcasts! I can, given the right circumstances, talk to someone without lip reading! (it is hard to de-learn my brain from lip reading!!!!)

But if there is one conversation next to the radio, the news broadcast is incomprehensive to me. Period. My brain still copes with the frequency change (like turning the vision upside down!), and haven’t gotten finely tuned yet.

Being confronted with my own shortcomings and imperfections is no walk in the park. It attacks my self-esteem and the psychological circus it triggers takes a lot of energy and joy away from me. I heat up and counterattack first, and then need a lot of time to process.

Passive audism is based on lack of information

Audism: “…an attitude based on pathological thinking which results in a negative stigma toward anyone who does not hear; like racism or sexism, audism judges, labels, and limits individuals on the basis of whether a person hears and speaks. (Humphrey and Alcorn 1995: 85)

audism I dare this little thought: it is near to impossible for someone with a normal hearing to really understand what it is like to have a profound hearing loss and/or then eventually be deaf. Just as it is impossible for me to imagine how it is for a deaf-mute to live through one single day. How does that individual even think or have dreams???

The perceived world decides very much of how and what we think and behave.

I meet passive audism regularly, to an extent that I do not think about it myself. It is “normal”.

Social interaction and a new sound world

social interaction All my life it has been a struggle to cope in social activities, and thus my social development has been profoundly marked by my hearing loss. Over the years I have developed certain survival and coping tactics or skills, such as nodding and smiling and laughing in the right places, even though I didn’t understand a thing what the conversation or laugh was about. Also I have removed myself from potential difficult situations and isolated myself in order to “save” me from getting into embarrassing situations.

This social and behavioral patterns does not disappear along with the new sound from my CI. That is a very wrongful and dangerous presumption… Unfortunately.

I wish it was that easy, but years and years of behavioral development (especially in a social context) cannot be undone in matter of weeks or months. It also requires both consciousness and awareness as well as plentiful opportunities to develop or change NEW behavioral patterns. In my case, I have been pretty isolated, compared to hearing people who have honed their skills of small talk for years and years. They are able to detect things in other peoples voices that I have no clue about, such as sarcasm or irony. I’m like a kid with a slight autism… Something is off, not normal, and thus susceptible to abnormal reactions to my actions or lack of actions.

Add to the fact that my brain is in need of getting to know each and every voice in my life, keeping some kind of a voiceprint in a huge voiceprint database. Yes, the need for this will probably diminish over time, given the new hearing, but THAT WILL TAKE TIME.

corrupt data The CI implant rendered my finely developed and 30 years of sound-samples database somewhat obsolete. I just had a massive data crash! All my sound-data has been “corrupted”. That WAS the distorted sound world, NOW is the NEW and REAL sound world I have to learn to live with. It takes TIME.

Imagine you studied something for 30 years, only to find out that the books you read all were wrong, and you had to practically start all over!

It is presumptuous to believe that I will be just like everyone else with the snap of a surgeons fingers. Not going to happen. Accept me for who I am and what I try to do. And give me TIME to learn what most people take for granted.

learn

2 Responses to “Unrealistic Expectations from the World? Audism?”

  1. aj Says:

    Really good points there. We will never be “normal hearing” even with CI, and there will always be situations where hearing is difficult. This can be hard to accept, but it is important to come to terms with one’s hearing difficulties, even post-CI.

    • Richard (Rick) Rutherford Says:

      Dear Ulf,
      You are incredible! You are standing on the edge of the abyss and you are not doing what 90% of the people in your place do! What is it that they do and you are not? They sabotage themselves. How? By bringing this audism (which we absorbed when we were hearing people) into their new Late Deafened World and using it to attack themselves. Expectations! Exactly! We bring with us, these expectation of the hearing world we grew up in, with us as we lose our hearing. We feel defective, broken and stupid. How many times, while you were growing up, did you hear, “What’s the matter with you? You stupid or something?” This attitude, this perspective is that we are broken and we need to be fixed. We need to be made to look and act like all other hearing people. One of the destructive expectations we bring with us is that WE MUST FIX OURSELVES. That we must make ourselves look and act like hearing people. The key to this that we must, “…respond appropriately” That means that when someone talks to us, that we say the right thing back. Our efforts at bluffing were a desperate, destructive effort to make ourselves at least look like hearing people. I felt shame and guilt when I bluffed but I couldn’t stop myself. This is the crucial meaning of language. Language is that thing that connects us as people. Language is the foundation for intimate relationships. Between parents and children, between lovers and between individual members of society. If we have an incomplete language, our relationships suffer. Hearing people don’t understand this. That is one of the basic parts of Audism. That is why sign language is so important to the Deaf community. Language also, by itself, organizes the brain. The onset of language (about 2 years of age) helps to structure the development of the brain. Missing this stage of development results in difficulty in developing critical thinking. The ability to understand abstract thought suffers. A visual language, such as sign language, manages to accomplish this just fine. The brain cannabilizes the unused auditory pathways for other things. So, where am I going with this? I’m going to the Late Deafened World. We have three worlds (actually more). The hearing world, the Late Deafened and HOH world and the Deaf world. I have chosen first to define myself as NOT HEARING. I have also chosen to define myself as not culturally Deaf. I do find myself in this middle world, which overlaps both hearing and Deaf cultures, this Late Deafened World. We have our behaviours which are common to us. We have our language, which is a patois of coping strategies, hearing, perhaps some sign language and whatever works. This is the question of identity. We have our personal identity (that which distinguishes us from others) and we have our social or cultural identity (that which connects us to others). As we lose our hearing, we lose our cultural identity. If we do not re-adjust our cultural identity, we will find ourselves trying to become something we are not. We will find ourselves trying to be hearing people, which we are not. The result is loss of happiness, joy and serenity. By understanding I am not hearing, I have found far more joy in my life than I ever thought possible. I do a lot of service in the hearing loss community and it gives me a wonderful sense of purpose and a profound feeling of joy. I know that I am in exactly the right place, doing exactly the right thing. I have written a number of articles for the ALDA (Association of Late Deafened Adults) newsletter along these lines. I sugget you read a book, The Mask of Benevolence by Harlan Lane. He talks of audism….and you are doing exactly the right thing and I support you completely!!!!


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