Facing and Resolving Hearing Loss Issues

How do we get the information to most audiologists? I wish I knew. The information is there but they must see value in it and they must seek it out and understand it. How do we make that happen? I haven't a clue.

Here's a good example of one of the reasons why Dr. Steve Huart at Mayo Clinic in Scottsdale is as good as he is - he stays on top of hard of hearing issues as addressed by hard of hearing people! That's rare for an audiologist to do. I know for a fact that Steve reads HOH-LD NEWS. I told him about almost a year ago and occasionally he'll call or email me and ask about something he read in HOH-LD NEWS. Imagine an audiologist doing that! Steve does. Steve was in charge of the Arizona Speech Hearing Association this past spring. He made certain that the Arizona Commission for the Deaf and the Hard of Hearing had an exhibit booth, he asked them to present and he asked me to present assistive listening technology. In my opinion a person who is that involved in the HUMAN aspect of hearing loss has to be pretty damn good as an audiologist. Steve is very much aware of the fact that there is a person on the other side of the ear. We've talked about it. I firmly believe the reason the majority of hearing aids sold are sitting in the back of dresser drawers all across the US is because the person who was to wear them was never really considered.

If the hearing aid industry wants to sell more hearing aids - and they do - they'll begin to market them from a hard of hearing PERSON perspective - and they don't. It's a concern that the president of the national hearing aid manufacturers association (of some such name, I forget) recently expressed. She said that the industry must find a way to favorably approach the new wave of Boomers and that the industry was trying to address the problem. Hahahahahahahahaha! I am not kidding. I wrote her a letter and told her for starters to fire their PR and marketing people because it is obvious they are all hearing. WE DON'T RESPOND WELL TO THE PATHOLOGICAL PERSPECTIVE. And sadly they don't know what we mean when we say that. We aren't sick. We don't want to be dependent. Audiologists are not physicians and we absolutely despise it when they act as if they are. I also told her that her industry has largely created the problem and that they still do. When one of the major features of an advertised product is that "NO ONE WILL SEE IT" it translates to "YOU SHOULD BE ASHAMED THAT YOU NEED IT." Well guess what, the hard of hearing public, deep in denial, responds accordingly by not getting one! That makes perfect sense to us but the hearing aid manufacturers don't understand that. Why? Because they don't see the person on the other side of the ear.

Hearing loss is not life threatening but it is or can be life changing or life destroying. I've been reading research on language/culture and self-concept and there's some very interesting information out there that relates to hearing loss. Our self-concept is directly connected to our culture. Language is a key component of culture. Often it is through language that we are validated by our culture. Being recognized as a member of one's culture is important to all of us, perhaps critical. Once we began to lose our receptive language abilities we began to feel cut off or disconnected from our culture. The feeling is reinforced when things happen that we were not aware of, or we show up late, or at the wrong place when plans were changed. So much information is passed incidentally that you actually have to BE hard of hearing to realize how much of our culturally significant events and behaviors are dependent on oral communication. It doesn't take long to realize you are NOT part of the mainstream flow of information. That fact is reinforced countless times daily. You begin to slip away from your culture and/or your culture begins to slip away from you; you don't feel validated and your self concept sinks like a rock in deep water. Psychologists who are hard of hearing or who work with hard of hearing people like Dr. Sam Trychin or Dr. Mike Harvey will tell you that hearing loss can be a very, very severe disability. It doesn't have to be but because of the nature of the disability it can be extremely severe and perhaps even life threatening.

What prevents hearing loss from becoming a severe disability? Other hard of hearing people. I've learned more from other hard of hearing people than I' ve learned from anyone. That is why HLWork is so valuable. We can be validated (or not) here by each other. I know everyone here understands my experience as a hard of hearing person. Also SHHH and ALDA in my opinion are two of the best organizations going for hard of hearing people. SHHH has been great for me. I really enjoy ALDA. I tell everyone to join a self-help group and I have a paper listing all groups and locations in Arizona. SHHH does more for the hearing aid industry than the industry does for itself.

Also I find Rick's experience in Canada extremely interesting. Here in the US, Rick, an audiologist can dispense. Hearing aid dealers can obviously dispense as well. There are some good dealers out there. Recently in Yuma I met two outstanding hearing aid dealers. Most audiologists know next to nothing about assistive listening technology beyond hearing aids. Do audiologists in Canada provide aural rehabilitation/hearing aid orientation?

Aural rehabilitation or hearing aid orientation is something I think most of hoh people feel is very necessary. We'd like to have more of it. We know that it would go a long way in keeping people aided and going back for new hearing aids when the time comes that they need them. Research supports all that. I'll look for the reports I've read if anyone is just dying to know but research has shown that there is a direct relationship between aural rehabilitation and hearing aid consumer satisfaction. In essence aural rehabilitation creates more successful hearing aid users as opposed to no aural rehabilitation. Well gee whiz we all probably knew that but studies confirm it.

There are many variables involved. How soon after should hearing aid orientation start? Is group better than individual (some of the research I read said group is better)? Do family members attending the orientation make for a more successful experience for the hoh person? I don't know but it would be something to consider. How much information should be given and how many meetings or trainings are enough. There seems to be an indication that more than one training is better, maybe several is better yet.

In short what often happens when we get our first hearing aids - especially our first hearing aids - is that we have likely lived as an unaided hoh person for about 5 or more years in stages of denial. In doing that we have developed bad hearing habits. I know I did. We didn't know not to sit facing a bright window when we ate in a restaurant. We didn't know not to try to have a conversation with the dishwasher, the TV, the refrigerator and the dog barking all at the same time. We didn't know that sound bounces off hard surfaces. We didn't know that consonants carry most of the information in spoken English but that they have very little dB strength. There is so much that we didn't know because we were in denial. As a result we developed bad hearing habits. One day we went out and got our first hearing aids and without proper aural rehabilitation we became aided hard of hearing people with bad hearing habits! Basically we didn't give our hearing aids a proper chance to work at their optimum. Many of us became fed up and put them in the top drawers of our dressers and never used them again. Some of us made it through the maze and discovered on our own how to hear better with hearing aids. A few of us, if we were really lucky, received aural rehabilitation, were told about lip reading classes, assistive listening devices, t-switches, the ADA, how and where to sit in a given situation, captioning - open and closed, telecommunication devices and self-help groups.

Rick:

I don't know all the details Randy, not having used such services. I've worn a hearing aid since I was six years old. Judging by the posters around the clinic, however there is good cooperation between consumer groups and the clinic program. I see notices of meetings regarding hearing aids and coping, etc. The Canadian Hearing Society, a non profit group with some government funding, sends social workers out to old folks homes in an outreach program that does a number of things like you suggest, and the Clinic is involved in that too.

One gal even got enough from that she was able to return to her home! Her family put her in a home because she could not hear sounds like a pot boiling over on the stove, and acted to preserve her safety. While in the home the CHS found her as a very withdrawn and depressed individual. They arranged a hearing test, got her outfitted and helped her learn to use it. She is also, now, thoroughly enjoying her grandchildren where before she could not hear them, and has gone back to independent living.

Clinical audiologists, along with opthamologists, are considered health care workers and their fees or salaries are paid by government universal health care. They do not dispense. The only place I have seen the follow up services you describe at are the Parkdale Clinic of the Ottawa Hospital department of Audiology. I am in there just about every week or so for mapping for my C.I. They are a fine and effective bunch of people. Can't believe the level of service I get! They also have a C.I. users forum and get together meetings once a month. (Haven't been yet, because its been temporarily suspended due to strict provincial hospital security related to SARS.)