My oldest daughter Ashlin was identified with profound hearing loss when she was 18 months old. The news swept us off our feet.
It was completely unexpected. No one in our family has a hearing loss, nor did anyone we knew. Until I became involved with Hands & Voices I carefully used the term “hearing loss” when it came to both my girls. My involvement with Hands & Voices meant opening my vocabulary to include such words as “deaf.”
In my opening comments at our first statewide conference this past spring, I admitted for the first time how difficult it was for me to use the word “deaf” when it came to my girls. I was personally surprised by how emotional and meaningful that one little word was to me as I admitted out loud to a roomful of strangers, and for the first time, that I didn’t like saying “deaf.”
Deaf. For some, it’s just a word. For many it’s who they are. For hearing parents, this one little word can be scary: not just new to their vocabulary, but a reminder that their child is different from them. The word brings us face to face with the unknown.
My saying “hearing loss” felt less foreign to me, easier to my heart and I find that when I use the word “deaf” in public I get a more pitied look from the person I am talking to. Deaf to me meant a world I didn’t know, a community that might not accept our choices.
Deaf. My girls are deaf. They are also smart, funny, silly, caring, generous, snuggly. Oh, and they have cute little girl butts! Deaf. Why is it that this part of them stands out the most? Why is it that this one word raises so much controversy, so much angst?
And if I really want to talk about controversy, then I just need to mention the words “cochlear implant!” The use of hearing aids among hard of hearing individuals doesn’t seem to entice such controversy. Why is that? But cochlear implants can bring hostility; the eviction of someone from the deaf community.
At the conference, former H&V board member Janet Johanson stated that her bilateral cochlear implants are a “tool,” similar to using the myriad of other technological tools available to deaf/hard of hearing individuals.
As a parent, I have always looked at cochlear implants as a communication tool that can help them be with and part of the greater community. They are still deaf. They just have this incredible technology that let’s them talk and sing and hear birds sing.
Blind people don’t seem to have such an exclusive culture or so much emotion put into their sensory loss; why does deafness cause so much emotion?
I wonder how my girls will feel about Deafness, the deaf culture and community in the future? Will they feel like they are part of the deaf world or hearing world? Or, because they were implanted at young ages, and attend school with hearing kids and kids with hearing loss and are part of the H&V community, will that line become blurred for them? Will it matter? No one can tell me what life will be like for my kids since only in the last few years have children been getting implanted so early.
Question: Should they define their life as being deaf or hearing? Or should they define their life by the type of women they are going to be, the role they will play in our community, and in the world?
Call me naive (and I very well might be when it comes to this!) but as their parent I want their lives to be defined by the human beings they will grow up to be. I want them to do amazing things with their lives. I want them to make a difference. I want them to be happy, to believe, to have depth in their character. My girls get to experience the beauty of quiet and of sound; which I think can give them a unique perspective on things, and I think it will make them better women, will make them more attuned to the world.
I know their deafness has made me a better person and I thank them for that. I have been able to meet really incredible people from around the world because of them.
My girls are deaf. I am grateful. They are healthy, they are smart, they are fun to be with. As some incredible deaf adults have told me, I am making too much of this. Maybe I am. But as I meet more parents and deaf individuals, I come up with more questions. My experience with deafness is limited; I have more to learn and I am grateful that I get to learn more.
Deaf. I no longer feel threatened by this one word.
Helen Cotton Leiser is a mom of two deaf girls and executive director of Hands & Voices of Oregon, www.handsandvoicesor.org.
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