Time to Roll Up the Sleeves

So I am on the Gallaudet campus this week and I happen to pick up a copy of The Buff and Blue (the Gallaudet newspaper), which of course I had heard of but never actually read. There was a powerful photo of the new Gally President, Roberta Cordano, a thoughtful article on the oppression of deaf people with additional disabilities, and a retrospective from outgoing president Alan Hurwitz. All very interesting and informative articles. But the one that hit closest to my heart was “EHDI: The Future of the Deaf”* by Sean Maiwald.

I have been attending meetings and conferences about Early Hearing Detection and Intervention (EHDI) since around 1997. This was before EHDI was a national program. At that time the Centers for Disease Control and Prevention in Atlanta held several meetings to promote EHDI. While at that time some states were screening babies, most were not. Attendees at these CDC meetings wanted to find ways to get more states on board. Most of these folks were from the medical field, so they saw being deaf as a medical problem that could be fixed with a medical solution. I remember sitting at one meeting where a photo of a baby with hearing aids was shown on the screen. “Isn’t that great!” someone said, full of emotion.

Those of us who have been around deaf babies know that a hearing aid alone is pretty meaningless. The real question is: Does the child have age appropriate language? And we also know that making sure that the child acquires that language may not be easy. A family may not have access to high quality early intervention services. They may not have an opportunity to be around the deaf community or other families with deaf children. They may be discouraged from signing. Identifying a child’s hearing levels – and even outfitting the child with a hearing aid – is a beginning, not an end.

Back in 1997 it was easy to see that EHDI systems – and the people promoting them – had a long way to go before they could maximize the opportunity that hearing screening provides.

Over the years EHDI programs have expanded to all the states, and the CDC meetings have evolved into the national EHDI conference (next one will be March 13-15 in San Diego). At the first national conference there was exactly one deaf person in attendance. That number has greatly increased over the years, with deaf representation in presentations and workshops, on the planning committee, and involved in other EHDI activities.

However, EHDI systems remain heavily medically oriented, and there still are not enough deaf community members involved in EHDI at either the national, state, or local level.

This brings me to Sean’s article. The purpose of the article is to encourage deaf community members to be involved in EHDI so that they can support parents of deaf children. Ninety percent of these parents are themselves hearing. Sean writes:

“For many of these hearing parents, their baby is the very first deaf person they have ever met. The parents typically grieve because they are worried that their child will be nothing like them. Obviously, as Deaf persons, we know different – Deaf people are just like hearing people. There are good people, bad people, stupid people, and intelligent people alike present in both deaf and hearing society.

“I assert that we should shift paradigms, and include a deaf person in that grouping [of people that frame perceptions for hearing parents]. Deaf people in the United States can and should become active participants in the EHDI world. Think what would happen if a worried, nervous parent could meet a successful Deaf person around the time they find out that their child is Deaf. The parent could ask the Deaf person any kind of question. Meeting an older Deaf person with a job, house and all the trapping of success could reassure parents as well a provide for a support system.

“This welcoming of sorts of the child to the deaf community has the potential to become a positive, formative experience.”

Sean goes on to list specific steps deaf community members can take to become involved.

Sean, you are spot-on. There are so many EHDI programs that do not include deaf individuals at all. Hearing parents who have never met a happy, healthy deaf person don’t get a full picture of what it’s like to be deaf. But let’s not stop with parents. How would our EHDI systems be different if we had deaf people running state EHDI advisory committees? As screeners in hospitals? As managers of federal EHDI funding? There is no reason that a system designed to support deaf children shouldn’t have a fair number of deaf people all through that system. EHDI systems – and all systems supporting deaf children – benefit from the positive, affirming contributions of deaf individuals.

EHDI systems started with a purely medical focus and have changed slightly to include a deaf perspective, but they have not changed nearly enough. So Sean throws down a challenge to his peers:

“Here’s your chance to make a difference in the years to come.”

It is said that all of us must be the change we want to see in the world. Three cheers to Sean for being just that. 

© Barbara Raimondo 2015