Growing up, I did not have, nor did I seek out, hard of hearing friends. Indeed, not until just recently did I begin to think of myself as hard of hearing, even though, since age 4, I have been deaf in my left ear and progressively losing hearing in my right.
Raised by hearing parents and surrounded by hearing peers, I could envision for myself no other existence; a ‘normal-hearing’ world was all I knew, or cared to know. My hearing loss, as I first perceived it, was but a nagging inconvenience --- a daily burden that, while inescapable, was of little consequence.
However, as I passed from childhood to adolescence and my residual hearing continued to fade, I was able to sustain this farce only with great difficulty, impelled by resentment and, more so, by unrelenting fear. I shunned the reality unfolding before me, preferring to struggle in silence rather than suffer openly what I considered the humiliation of dependency and the agony of exclusion. I saw my hearing as an enemy, and fought against it in defense of my place in the only community to which I felt I belonged.
It was a fight that, moreover, I resolved to wage alone. While I was tremendously fortunate to have the unflinching support of my family and friends, not to mention the counsel of highly qualified hearing health professionals, there was no one to whom I could turn for the genuine empathy which only shared experience entails. No product of utter circumstance, my solitude was, in fact, adamantly self-imposed. Hopelessly in-denial and, yet, consumed with shame, I scorned my parents’ attempts at facilitating the hard of hearing community which, in retrospect, I so desperately needed. The mere suggestion that I might benefit from, let alone find comfort in, the companionship of other individuals with hearing loss seemed only to confirm what I feared most: that I was somehow unfit for the world in which I lived.
When I walked through the doors of HLAA for the first time in October of 2004, I had no idea what to expect. In D.C. for a gap-year before starting college, I was interested in politics and, thus, dutifully enlisted as an intern in the US Senate. Yet, eager for a change after a few disillusioning months on Capitol Hill, I acted on the advice of a colleague and contacted HLAA (then SHHH) about a position in the advocacy department. A week later I was in Bethesda for an interview with Brenda Battat and Terry Portis. Aware of my rather severe hearing loss, Brenda inquired whether it had been my habit to request Assistive Listening Devices and other accommodations in high-school. Answering truthfully, I confessed that I had never sought such services, nor did I feel I truly needed them, opting instead simply to ‘ride out’ whatever difficulties I encountered. Brenda, as those who know her could easily predict, was not pleased. Empowering hard of hearing Americans to help themselves, she reminded me, is what this organization is all about. Flushed with embarrassment at my gaffe, I quickly stumbled to recover. ‘I just blew the interview,’ I said to myself.
Fortunately, Brenda agreed to give me a chance, if only as I was willing to work for free. Thus began one of the most fulfilling and transformative chapters of my young life. Over the course of the next seven months, I learned a great deal about hearing loss, about the issues hard of hearing people face, and about myself. Amongst a community of individuals who shared in my frustrations and understood my fears, I summoned the courage, at last, to cast off the silly façade and make peace with a reality I had for so long denied. For, to my immeasurable relief, I was no longer caught between seemingly conflicting worlds, but was distinctly and delightfully at home. HLAA was my sanctuary, and I cherished each and every day I worked (and continue to work!) on its behalf.
Looking back upon my experience growing up with hearing loss, I am startled both by all that which has changed and, yet, by all that which remains the same. ‘It’s OK to ask for help’--- the first of many invaluable lessons that I would learn at HLAA, it is also the one that I seem most prone to forget. Though I am, as I write, more at ease with my hearing loss and its demands than ever before, not a day goes by that I don’t catch myself, in a moment of anger or confusion, reverting to old habits. I suspect such will always be the case. The need for community, I now realize, does not ebb and flow, but is just as persistent as my hearing loss. I am grateful that I will always be able to draw strength from my friends at HLAA.
I returned to Bethesda this summer with the intent of spearheading an outreach effort aimed at attracting younger generations of Americans with hearing loss to HLAA. Towards that end, in the past weeks I’ve begun to lay the foundation for an interactive social website through which hard of hearing individuals will be able to network, seek support, and organize events. There is no reason why any American with hearing loss should feel cut off from a community which, in fact, numbers in the tens of millions. Though I was lucky enough to find HLAA, countless others have not been so fortunate. It is our responsibility to reach out to them, and by whatever means we have at our disposal.
The story was also printed in a recent issue of Hearing Loss Magazine.
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