Re-Imagining Deafness - Part Three

Keynote Speech by Dr. Sanjay Gulati

Part Two

Advocacy

The complexity of advocacy will be the theme of the Friday night panel. It has many dimensions, from advocating in a family to national advocacy. In another dimension it ranges from nuanced work on details within a system to the most militant expressions of the need for radical change.

It takes a lot of energy to advocate, and many of us move throughout the second dimension at various times. The simplest act of advocacy is to simply stand up and show who we are.

How is it that a couch potato who can barely walk around the block is considered normal, while a blind man who climbs Mount Everest in considered disabled? The concept of normalness is used to protect the psyche of a certain group of people.

Disability opens doors by facilitating a heightened awareness of social context.

I invite you to make the most of these few days at ALDA, to use them as a door to a new connection to advocacy, and to enjoy the camaraderis.

Dr. Schlau found that people who experience hearing loss tend to end up with one of three attitudes: struggling, resigned, and accepted.

I love reading the stories of others, in part because I learn how they handle their challenging experiences. Oscar Wilde wrote that we are all in the gutter, but some of us are looking at the stars.

Let's reimagine our deafness as normal!

I'm hoping that we have some time to chat.

Q. I'm inspired by your talk and the many references you gave. Where can I get a copy of your book?
A. From the publisher. I think it's cheaper that way than through Amazon.

Q. I was affiliated with the hospital for 18 years, but never knew Dr. Sanjay until today. I feel much the way you do. I'm thriving now, and partly because of ALDA. My deafness is really only 6 years old. I remember an article by Laurel somebody, who was on the board at Gallaudet. My question is, these stages we go through, it seems that there's always a bit of denial and struggle, even though I feel I've come a long a long way. So do you think there's still some of the early stages now that you're thriving?
A. Yes, I think we all go through all of the stages all the time. It's more a matter of what focus you have.

Q Are you considering a CI?
A. I'm not sure I'm a candidate. I think there may be enough damage to my auditory nerves that I'm not a candidate. I don't wear my hearing aids most of the time. I normally sign and use an interpreter when I need one.

Q. Do you have any specific, concrete suggestions that can assist people to get through the phases?
A. Jane 's dissertation includes references to the works of Argyris. He talks about two types of learning:
1. Single loop learning, which is knowing what you want and going after it.
2. More complex learning, in which you adjust what you're doing to reach your goal, but also adjust your goal.

The specific suggestions will be different for everyone, so it's hard to give specific things. But in general, I think stepping back and using the second type of learning is a key.

Q. You talk about wearing hearing aids sometimes and not others. I've been HOH since age four, and now I'm over 50. Now I find myself turning my aids off more and more. Why is that?
A. I think it depends on how much useful information you get. Imagine that your car had a single red warning light that flashed when anything is wrong. It would be a constant source of irritation, but wouldn't give much usable information, and you would want to turn it off. So I think we choose to not wear hearing aids when they don't provide a lot of benefit.

Q. I work in a large company, and I sometimes have to take my hearing aids off, because of the heat in the plant. I have shared that with my coworkers, and they always look after me at work. I have one question for you. I have a hard of hearing friend who is also legally blind. She accepts her deafness, but is struggling to accept her blindness. She's frustrated and blames everyone around her. Do you have any suggestions to help her?
A. I think that having friends who can help you see the reality of the situation helps a lot. And also having friends who know when to impose that reality. The first thing is to not run away, so when there's a "teachable moment" you'll be there to help her.

Q. I want to share one thing. When I became a part of a group of people with very severe hearing loss, I was surprised to learn that many of them didn't know what to do in various situations. Some people asked me how I functioned at school when I couldn't hear. I explained that I read everything I could in advance, I noticed what side of the room the teacher tended to face and I sat on that side, I sat in the second row, because teachers often walk up even with the front row.

I think part of the reason I was able to problem solve is because I grew up on a farm and watched my father make do with what he had. That's a very good lesson in problem-solving. I think we all need to learn problem-solving skills.

C. I started to lose my hearing in the Navy. In my exit physical, the doctor said that I had a hearing loss in one ear, but that it was above the speech range, so it wouldn't be a problem. He essentially gave me permission to ignore my hearing loss. Over the next several years my hearing loss continued, and soon I was unable to function.