Re-Imagining Deafness - Part One

Keynote Speech by Dr. Sanjay Gulati

ALDA President Kathy Keefe

We always have ALDAcon in autumn, which is the season of change. During autumn, nature is preparing itself for a season of sleep. Here at ALDAcon 2006, we're not going to sleep. We're going to raise the heat and show the light!

We have a full agenda scheduled, including workshops, exhibits, and lots of great meals!

On Friday night we'll have a panel discussion with the CEOs of three of the prominent hearing loss organizations:
Nancy Bloch of the National Association of the Deaf (NAD)
Terry Portis of the Hearing Loss Association of America
Claude Stout of TDI

We also have Dr. Hurwitz from NTID, who will speak on Saturday. And marriage and family counselor Dr. Lucy Miller will be speaking today lunch, asking the rhetorical question, where do I fit in? We also will hear from Bill Graham, one of the co-founders of ALDA. Everyone will enjoy his presentation, but I think it will be especially enlightening for newcomers.

Technological advances and improved public attitudes towards people with hearing loss are two of the changes we've seen in the past 20 years. People used to hide the fact that they were signing; they used to hide the fact that they used hearing aids. That's all changing, not only for people with hearing loss, but for people with all disabilities.

We have a great local program in Boston, in which people with various disabilities speak to kids in elementary school, and programs like that have done a lot to turn things around. As you all know, the biggest roadblock for people with disabilities is not the disability itself, but rather the attitudes of the public. That's what we need to change.

I'm reminded of the great TV program "Cheers". The opening line talks about a place "where everyone knows your name". That's a perfect description of ALDA. If I don't yet know your name, please come up and introduce yourself.

Now, proceeding directly to the heat and light portion of today's program, here's Dr. Jane Schlau to introduce today's speaker!

Dr. Jane Schlau

Our Plenary speaker is Dr. Sanjay Gulati, who has been a very important person in my life. He is a child psychologist and has an impressive history of working with people with hearing loss. But he is about much more than his credentials. We had dinner last weekend and we discussed the presentations we were preparing for this conference. We also did a lot of emailing back and forth. He emailed me the title he had chosen for his presentation - "Reimagining Deafess". I really like that title, because it says so much about our journey in deafness. It is my great pleasure to introduce to you Dr. Sanjay Gulati.

Dr. Sanjay Gulati

I'd like to start today by talking about some of the signposts of disability.

Denial

This is only my second ALDAcon. My hearing loss was identified when I was 20, and I spent my 30s and 40s working out a new life that included dealing with my hearing loss. It has continued to progress. Four years ago I gave up using the telephone. Three years ago I began using interpreters for meetings involving more than one non-signing person. Yet last year was my first ALDAcon.

Why did I avoid ALDA during all those years? Because I was in denial. Just as I denied that being fitted with hearing aids was the reason for my sudden improvement in school performance.

Television producer Richard Cohen claims to be an expert in denial. He has multiple sclerosis (MS), and he long relied on a form of denial to continue to work. He started giving up his denial when he began using a cane. He thought of it as a "neon statement of vulnerability". But it also meant that the unspoken lie had evaporated. Denial had taken him so far, and now he would have to rely on reality. He was surprised to learn that some of his neighbors, seeing him sway and fall all those years, thought he was an alcoholic.

Cohen started me on an odyssey to learn about other disabilities. There are probably many people in this audience who have other disabilities in addition to hearing loss.

Loss

The next signpost is loss. Denial is used to protect us from having to face our loss. It's painful to finally give up the denial and accept the loss. After my hearing loss diagnosis I continued my medical studies and refused to look at the effect hearing loss would have on my medical career. I realized I had to do something when I released an asthmatic girl to go home from the hospital, because she was no longer having trouble breathing. It turns out she was having trouble, but I couldn't hear her wheezing!

I felt trapped by my hearing loss.