What’s in a Name?
By Lisa Cable
My daughter is Deaf. Or deaf. Or hard-of-hearing. Or functionally hearing? Or any other fancy label that I can come up with to call her. She was born with a bilateral mild to moderate loss, and wore two small hearing aids starting at four-months-old. Her hearing loss has progressed due to enlarged vestibular aqueducts (EVA), and she is now in the severe to profound range. Presently, at age four, she wears one (bigger) hearing aid and a cochlear implant. She listens, she speaks and she signs. She also ignores me when she sees fit. She identifies with hearing peers and loves to be around other deaf and hard-of-hearing children. Her many preschool teachers range from hearing to profoundly deaf and unaided to everything in between. She loves them all.
In the midst of all of this, my struggle has been what to “call” my daughter. How do I introduce her to people so that they understand her abilities? How do I describe her in a way that accurately reflects who she is? The challenge is a moving target most of the time.
In a Deaf culture environment, I often introduce Lily as hard of hearing. At this point in her life, I don’t think she fully identifies with Deaf culture. However, in the “hearing world”, I say that she is deaf. I learned that if I said she was hard of hearing, some people would just yell at her, thinking that was the solution.
My dream world would be to have everyone she meets go through an interactive training session that introduces hearing loss, Deaf culture and my daughter’s unique audiological and communication needs. I suppose people would just think I was weird if I whipped out the PowerPoint as soon as I met them.
Beyond the “labels” specific to hearing loss, there are broader ones. Is Lily disabled? Is she a special needs student? Even though these may be accurate in some sense, I feel that in today’s society there are certain negative connotations attached to these words that I don’t like. I know there are many that don’t even like the term “hearing loss” as the word “loss” implies something positive that is now gone. Some adults point out that they never had a loss; they were born Deaf.
Maybe you’re saying to yourself: why are you worrying about this? Shouldn’t it be your daughter’s decision how she talks about herself? Absolutely! However, as a precocious four-year-old, Lily’s identity is wrapped up in whether she wears her Spiderman shoes or her fuzzy pink boots to preschool; she is not concerned with her greater personal identity now.
Maybe that’s the crux of the matter. Maybe I need to take a step back and just let her discover who she is, without labels. I want her to see and hear me talking about her in positive terms so that she can use that as an example for future advocacy. Maybe I need to take away the labels, the titles and whatever else I call her. Because to me, to her dad, to her brother and to everyone that loves her….she is simply Lily.