Friday, January 8, 2016

Good Advice Often Falls on Hearing Ears

We can look at the problem as an epidemic of language deprivation among deaf and hard of hearing people.  How we see it,  and the language we use to name it and discuss it, will vary depending on our vantage point. See Where I Stand.   During my time studying at Gallaudet in 1985, I listened to many Deaf people recount frustrations with physicians and their agents (audiologists and SLP's).  They often stated that the medical world had a  warped perspective on how to help hearing families with a deaf baby.   Over the years, the stories of pain and frustration with the medical perspective have only accumulated.  They come from many other sources as well,  including early interventionists (EI's), educators, parents and family members of deaf children, and from some audiologists and SLP's, themselves.  Even today, it is common to think that the problem originates within the medical community.   Parents who sign often wish someone had told them the truth earlier.  They lament lost time, opportunity, and needless pain.

As a pediatrician who immersed myself in Deaf Culture years before I immersed myself in Medical Culture,  I see it differently.  I came to my medical practice with a belief in the power of ASL as the way to both brain development and emotional connection for these babies.  I already understood that the wisdom to impart to these parents was sheltered within the Deaf Community.  I had hoped that by creating a medical practice to serve these families, I would be able to bring a unique model that integrated the Deaf World / ASL foundation for brain and emotional development with some of the technological tools that medicine offered. 

Some parents took my "integrated model of deafness" to heart.  But what is more important is that many did not.  Despite my credentials and excellent reputation (medical director of our state's residential school for the deaf, large number of deaf babies in my practice, use of sign language, American Academy of Pediatrics "Chapter Champion" for Early Hearing Detection and Intervention, and more) many ignored my advice and did the opposite of what I recommended.

What compels families to ignore the facts and an "expert" with extensive knowledge and experience,  and choose the other, risky, disruptive, and even detrimental methods for their child? This is where we must shine a light.  In a word it seems to be audism.  Audism in its most basic form is the belief that one is superior based on one's ability to hear.  Audism is cultural, and it is so deeply ingrained in the psyche of hearing people, that it is impossible to detect in oneself until it is pointed out.  Most hearing people do not even have an awareness that being hearing has a cultural component.  So they cannot make the intellectual leap of dissecting out a cultural attitude to see how it is shaping their decisions. Their hearing-ness is taken as normalcy and another's deafness (even their own child's) is seen as a defect.  In many instances, the deafness is perceived as nothing less than a threat to their child's well-being and the stability of their family.  I believe these parents make crucial decisions based on a "knowing and feeling" that is deeply rooted in their audism.  Their fear and their audist perspective is the context in which my advice was given.  In other words, it fell on hearing ears.

There is more to say on this topic... But for now, I leave my hearing readers with this:

Discussions of audism are sensitive and triggering.  This topic always requires compassion, if not from others, then self-compassion for this sick part of ourselves.  And compassion from us for those who have been wounded by audism. 

Growing up hearing in a hearing world that we took for granted, means growing up in audism.  We are audist by design; for how could we not be?  We hearing people must not hide from our own audism, or push it down in shame.  We must allow it to rise to our awareness.  We must welcome it like a sick friend in need.  For it is a sickness, that we must nurture back to health.  My experience in my own life is that when we are ready to do that, we will find Deaf guides along the way who can help us to see what they see.  Then we can continue the life long process to heal this part of ourselves.  We will never be done with this work, because we were shaped by an audist society.  But we can make progress.  Through understanding ourselves we will understand others, and hopefully be closer to solutions for deaf babies in an audist world. 

4 comments:

  1. Excellent article. I would like to see a follow-up article on how to address this issue with medical personnel in hospital settings. Thank you.

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    1. Thank you for your feedback. Can you be more specific? For example, in what role would you be interacting with hospital personnel? As a hearing parent of a deaf baby or child? As an EI? As a deaf parent of a deaf child? And what would be the context? Well child visit, newborn hearing screen? I would be happy to share more of my thoughts when I have a clearer idea of the situation.

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  2. Too often, when one uses the word, audism, the whole premise of argument, discussion, debate, is moot. Do away with that word, and you'll get better results. Not everyone in deaf culture subscribes to that word because that word has been used as a weapon for too long.

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  3. I think it is time to accept our audism so we can move past it. When audism is pointed out, many feel insulted or defensive. Why? Can't we say, "Hmmm. That could be." Can't we be brave enough to look at our own selves critically. Let's take the scare out of that word. I think it is a great word.

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