After a bout with Spinal Meningitis in the 1960s when resources for parents with deaf and hard-of-hearing children were difficult to come by, (unless you were familiar with the John Tracy Clinic or the state institution for the deaf), losing my hearing at age four was the least of my troubles as a child. Doctors back then gave parents two basic options: “fix” the issue with auditory assistance devices and intensive speech therapy, or send me to a residential institution to essentially raise your child and just go on with life. My parents chose to keep me home and “fix” what was perceived at the time to be a handicap. My next forty years became an unconscious search for myself and exactly where I fit in as far as involvement in this thing we call “life.”
Mainstreamed through public education before the Americans with Disabilities Act (ADA) existed, there was no access to interpreters, notetakers, or other school-funded assistive devices that are provided today. In the majority of my schools, and in some entire districts, I was the only deaf student. I never really gave much thought to not being able to hear, and it wasn’t my hearing loss that made me feel different from my friends. I had speech therapy, lip-reading practice, and vocabulary practice that they didn’t. This was my alert to the fact that I was different from my classmates. My parents did a good job to help me “fit in” and included at family gatherings or other social events, but I often sought out quiet spots and corners away from the chaos. I was not anti-social, but my brain often “had enough” after trying to make sense of what was going on around me. Social events left me exhausted, sometimes to a point of seeking out a spot to curl up for a nap. Other than that, I functioned like any other individual inhabiting earth and never identified myself to others as “deaf” or “hard-of-hearing.” I was simply me, and it was all I knew to be.
My initial experience with college began at a small, private Baptist university. I was the first deaf student the school had ever enrolled. I found myself apologizing to people because I couldn’t understand conversations happening behind my back. I was involved in band as a percussionist and got called out often for being the only one who could follow the director’s wand exactly. The director would often have the rest of the band follow me, perhaps because it was easier than asking me to follow the rest of them when I couldn’t hear what was happening. I recall a guest conductor visiting the university was stumped at the one percussionist who stood out from the entire band by perfectly following the precise movement of his wand. A flautist then explained my deafness and the shocked look on the face of the guest director was priceless. This was the first time I gave any thought to identity as a deaf individual.
From that point on, students at the college campus would flock to me out of fascination at the concept that I could not hear, yet functioned as any other person. My first exposure to sign language was when a college classmate who had deaf parents taught me a few signs. I was fascinated enough to order a book and attempt to teach myself more. Something about communicating with my hands appealed to me, but I could not explain it. I related to this language, found it easy to grasp, and enjoyed it. I would go to sleep at night envisioning conversations in sign language and though I didn’t realize it at the time, in my dreams, conversations were easier and less exhausting.
I met my first Deaf friend while working at the IRS one summer. We communicated mostly in writing as my receptive sign skills were weak at the time. While I enjoyed the exposure to sign language and found it less tiring to communicate with this friend than I did with hearing people, I found myself struggling to prevent association outside of work with deaf individuals. This was the beginning of the self-identification struggles I later discovered commonplace among many in my shoes. Growing up in a hearing family and being taught to “fit in” to that culture, but yet not completely belonging is something that many deaf individuals with hearing families begin to recognize later in life. The struggle of identification as a person is present in childhood, but the child-brain does not fully grasp the concept until closer to adulthood.
Identity formation is not unique to deaf or hard-of-hearing individuals. It is a common phase of psychological development over the course of the human lifespan. Consider the identity issues that crop up during toddlerhood, the teen years, the teenage phase, and the college phase—this and the growing brain account for the sometimes chaotic, emotional instability and inability to make consistent, sane decisions at each level. This is our natural attempt at defining who we are at given moments in life. Throw hearing loss into the mix and one can almost over-sympathize with the confusion.
Pathologically, it makes sense that in common culture, deafness is considered an impairment which needs to be fixed. Time and money are then spent on devices, programs, and educational plans that help the identified child function like his/her family. We are blessed to have opportunities available that allow such inclusion, and many deaf adults subject to these measures as a child admit to appreciating that intervention for various reasons. Yet, for all the success transitioning from birth to adulthood, many deaf and hard-of-hearing individuals, either consciously or unconsciously, struggle when it comes to self-identity. Does this mean that as parents, we should be allowing our deaf and hard-of-hearing children to adopt a dual-identity, much like an adoptive parent of a child from a different racial background? Parents, for all their trying and best intentions, cannot become experts in a culture and a language foreign to them. Ila Parasnis, in the book Cultural and Language Diversity and the Deaf Experience, presents the case for developing a hyphenated identity. Unlike transracial families, however, language development is where everything changes. In a hearing family, there is still full access to language and communication regardless of culture differences, but when a deaf child is involved, that language access becomes restricted, thus developing a barrier to adopting a complete identity defined by one culture or another.
This is where identity struggle was focused in my own experience. I was torn between the comfortable, familiar hearing world where I would leave exhausted at the end of the day from overworked brain activity deciphering every conversation word by word, and the equally comfortable, although not as familiar deaf world where communication was a breeze and did not leave my brain exhausted, but I still felt something lacking – acceptance. Susan Crocker and Lindsey Edwards in Psychological Processes in Deaf Children With Complex Needs: An evidence-based practical guide suggest that Deaf children who have difficulty incorporating their hearing loss into their identity in a positive way sometimes try to develop an alternative identity that distinguishes them from peers or siblings by engaging in behaviors that set them apart from others. It is important, then, for parents to make sure that in the course of raising their child with hearing loss, they pay attention to the self-esteem lessons they are passing along. For example, are children encouraged to embrace all that they are, as they are? Are they taught to accept their assistive devices in the same regard as they accept their clothing choices? Are such devices promoted in a positive light and exposed, or are they hidden in embarrassment? Parents can definitely set the tone for their child’s ability to self-identify as he/she grows. I often look back on my own childhood and recognize how my father shaped my identity as a family member and as a successfully functioning member of society, but I also recognize that my hearing loss was so much of a non-issue I never learned how to fully embrace it, becoming comfortable enough with it to willingly make it a part of my whole identity as an adult. By creating my identity in the hearing world with focus on equality, my father, --in essence, through no intentional fault of his own--stripped me of my identity as an individual with hearing loss and left me to face it alone once I moved out of the comfort of home and into the world that expected me to own up to all that I was. My issue was that I no longer knew who I was, and it took years to figure it out. There are days I still struggle even though I fully embrace my deafness, am immersed in both cultures, and have close friends in each. I find myself trapped in that middle ground, struggling to remain involved in the hearing culture, mainly for the sake of my children and extended family, yet wanting to let go into Deaf culture, because this is where people seem to “get” me.
Unfortunately, on this journey of raising deaf and hard-of-hearing children, there is no manual with any one correct way to shape our children’s identity. That is something they develop as they grow, much like their personality. We can, however, ensure that they learn a self-confidence which enables them to advocate for themselves, that they embrace their hearing loss as just another small part of their whole being, that they realize the sky is the limit when it comes to creating goals and dreams, and that they recognize the value of love, both on the giving end and the receiving end. Where they end up as adults is the one thing we as parents cannot decide for them. The cultural pull is an individual thing, affecting each deaf and hard-of-hearing individual differently based on a variety of factors. Mark Drolsbaugh, an acclaimed author of books on deaf culture and perspective, in his 2005 book, Deaf Again, says it beautifully: “Deafness is a disability that is so unique, its very nature causes a culture to emerge from it. Participation in this culture is voluntary.” Fortunately, parents today have access to a plethora of resources and deaf and hard-of-hearing role models through Hands & Voices and their Guide By Your Side program which assists them in beginning to understand some of what their children may be harboring in their ever-changing personalities, brains, and yes, identities.
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