Re-Imagining Deafness - Part Two

Keynote Speech by Dr. Sanjay Gulati

Part One

Dependency

We fear dependency on others, especially in our society where independence is valued. Last week I interviewed a quadriplegic friend named Valerie. She broke her neck falling out of bed. Her boyfriend soon left her, because she could no longer participate in the outdoor activities they had enjoyed together. She has regained the ability to walk a bit, but she lives in fear of falling again, because she may again become totally paralyzed. She's also concerned that if she does fall, she can't get up by herself, and that makes her dependent on others, probably complete strangers.

Attitude

Attitude is of central importance in adapting to disability. At age 17 Laurent Grenier dove into the shallow end of a swimming pool and broke his neck. He now looks back on that day as the day of his second birth, because he now knows that happiness doesn't depend on any specific external circumstances. He says that it took him a long time to realize that he was less a victim of his circumstances than of his attitude towards those circumstances.

Ron Heagy was a high school athlete who drove into a wave, hit a sand bar, and broke his neck. His book is called "Never Give Up", and it's a great read. He writes that anything worth doing is worth doing poorly! The meaning, of course, is to get out and do things, even if you can't do them well.

Internally we go through a process of reimagining ourselves. It's about calling on all parts of ourselves and thinking about how we can proceed. Accepting disability is often compared to Elizabeth Kubler-Ross' five stages of dealing with death. When we lose our hearing, our identity as hearing people is gone forever. The funny part about that is that we never knew we had that identity. An important aspect of attitude is accepting what has happened and incorporating it into our new identities.

Dr. Shlau found during her thesis research that the remaking of the self following hearing loss involved three steps: giving up the hearing self, reflection, and purposeful change. When I was despondent over my hearing loss and angry at my ears, my girlfriend told me that I can't heal until I learn to love my ears.

Spirituality

Grenier perceived a deeper connection to all of life. His reflection brought him to a place similar to that which Heagy describes from a Christian perspective. Valerie says that wholeness and okayness are central issues in disability.

So far I've been talking about internal experience. Now let's move on to the relational and societal perspective. We need to consider the position of the "normal" folks, and how they view people with disabilities.

A man told me about his mother's hand, which was deformed. To him that was her hand, the hand that fed him and put him to bed, and it did that just fine. But on the street people stared at her hand, because it was different. So where was the disability?

The Need to Stare

Strangers stare at people who are different. I worked in the burn unit of a hospital, where people are torn between staring at a disfigured person and looking away. It's hard not to stare. One burn victim tells people to go ahead and stare for as long as they like. Once they've gotten past the staring, he can tell them how he got burned and about his life now.

Sometimes we resent the confusion and awkwardness of others. Last year I went to visit Gallaudet and I asked about the subway stop to use. They gave me a large print map!

The Fear of Offending

Grenier noted that none of his visitors ventured to burst his bubble with their realism. Able-bodied people often try to understand how they would deal with a disabling situation, but most people are unable to really grasp a situation so different from their own.

Guilt

When I went to visit Valerie, I bicycled the 20 miles to visit her. Should I have felt guilty that she can barely walk, and I'm out here enjoying a beautiful day on my bicycle?

Social Freedom

For me deafness has brought freedom. I've become very unconcerned about being conspicuous, and I'm more aware of who I am and what I want and need.

Our Need for Open-Minded and Caring People

We all need people in our lives who see beyond the disability. The fear of embarrassment is one of the main reasons that people avoid those with disabilities.

Society

Our adaptation occurs within society. Disability is about belonging. Societies choose who they accept and reject. Deaf culture has its circle, and ALDA has its. Martha's Vineyard gives a classic example of turning the feeling of belonging on its head. A group of people from a village in England settled in a village on the Island. They had a recessive gene for deafness, and a quarter of the population was deaf. Everyone signed, so the disability became invisible.

The most striking thing about some of the research and interviews of the last remaining people who lived in those times is that they often couldn't remember who was deaf and who was hearing, because it wasn't a significant feature.