In a Perfect World
Deaf/Hard of Hearing Adults:
Still Relevant After All These Years
However badly life can go at times, thankfully, some things are just so right, so incredibly “you can’t take that away from me” timely and divine. I count among those generous blessings my brother, Henri. He was born into my world when I was 31 and he was a college kid who had just been hired on as an intern at the TV station where I worked. It was surely no coincidence that my husband Tom and I had recently learned that our own little boy couldn’t hear…amazing the way life pushes the right people into our paths just when we need them.
Like most parents of a deaf or hard of hearing (DHH) child, we had never even met a deaf person. Then, voila, there was our own son, Dane, and here was Henri: funny, artistic, articulate, music-loving, snow-ski obsessive, novel-reading, vegan-eating, triathlon-competing, deeply attentive, patient, kind, generous, soulful and profoundly deaf Henri. Fluent in English, Spanish (okay, maybe not fluent in Spanish but he’s not bad) and American Sign Language, Henri was finishing a degree in TV, Photography and Digital Media with an on-site semester at WTVR. He shot feature stories, wrote copy for our Community Affairs segment, and edited packages for the evening news. How lucky I was to witness the capability, courage and accomplishment of this young man who overcame such hurdles to be there, and had something so significant in common with my own son—something even I couldn’t fully experience and understand about my child—how do you live life without a typical sense of hearing? Well, I wanted to know everything I could about what Henri did to get through his days. What his parents did to encourage his dreams; what felt really good, and what hurt so deeply? What I should do as a hearing mom to raise a happy, autonomous, comfortable-in-his-own-skin kid who’s deaf? Henri never minded being our sounding board, and always responded with such respect, sensitivity and non-judgment of our journey. Our bond was immediate, deep, and remains strong to this day…he is one of us, our brother, a part of our Christmas-morning family.
What DHH Adults Have to Offer
With an entrée like that, I have never needed convincing that adults who are deaf or hard of hearing bring an important, essential perspective that this field should embrace and imbed in our early intervention, education, family support, and clinical systems. However, this topic is usually pondered uncomfortably by those systems, often without resolution. The concern usually has to do with how different the world is today than it was 25, 30 or 40 years ago. What do DHH adults have to offer today’s families and systems? What’s still relevant after all these years?
The assumption that years put too much distance between a lesson and its current applicability is a dangerous one. We are surely fated to repeat the mistakes of the past if we ignore the wisdom gained from them. An important source of that particular brand of insight is the individual who exemplified the lesson learned—the kid who is now an adult who’s deaf or hard of hearing—and it’s downright insulting to ignore him or her. But the key here is to understand what part of the experience is wisdom, and what part is anger and resentment at the price the learner paid to gain it. Plenty of human beings went like canaries down the coal shaft of various schools of thought on what is best for DHH children. We need to listen to their stories, and they need to make them relevant so they aren’t dismissed as sour grapes or even long-caged rage.
What’s the Point?
Granted, we would balk at inviting an expert in the Dewey Decimal system to train today’s internet sleuths. How exactly would that be helpful? This is the sort of comparison I’ve heard by those who aren’t sure what the “deaf experience” could add because “it’s just not current.” But this misses the point entirely. We shouldn’t assume that all DHH adults have to share is a rehash of their late identification with hearing loss, their miserably uninformed parents, and how lousy services were back in 1973. We already know this. Or if we’re hearing it for the first time, the whew reaction, “thank goodness it’s 2008 and my kid won’t go through that!” usually marginalizes the information rather than internalizes it.
Indeed, revisiting those particular aspects of the “deaf experience” in a panel discussion or as a presentation at a conference is likely to be received as so much personal, historical data. It doesn’t really deliver an “a ha” moment for the new generation of parents whose babies had hearing aids on or knew a couple of signs (or both) by three to six months of age. But trust me, hearing parents of DHH children are on the edge of their seat when a deaf adult recalls her worst visit to the doctor, his Blue Ribbon win at the 4H Fair, a comical first date…or how she felt about herself when her mother cried at the kitchen table after coming home from their visit to the audiologist. Now we start seeing our kids in these grown ups…recognizing that our kids will one day be grown up with their own story to tell about their young life. So we lean in a little closer to find out about getting the driver’s license…or when the storm blew the electricity and everything went pitch black…the things we haven’t thought about before, or else think about obsessively from 2 to 4 am several times a week.
What Needs to Be Said
From my own experience and from things so many families and friends who are deaf or hard of hearing have said to me over the years, I’ve compiled a list of topics that I believe will hold up under a “relevancy” test. They lend themselves to meaningful discussion and influence long after they’ve been addressed by DHH adults. Feel free to borrow them for your next well-facilitated Deaf/Hard of Hearing Adult Panel discussion:
- What’s the funniest thing that ever happened to you related to your hearing loss?
- What was it like growing up deaf or hard of hearing?
- What are some of your strategies for overcoming communication breakdowns?
- What’s the most challenging thing about being deaf in a hearing family?
- Who had greatest influence on you and why?
- What did you want to be when you grew up? Did that goal change?
- If you have hearing siblings, how well did you all communicate together?
- Do you do anything different to compensate for your hearing loss in an unfamiliar setting or situation? When you drive? Fly? Travel abroad?
- What do you remember most about your school years?
- Did you play sports and how did you access communication in that environment?
- Describe your favorite teacher…why was s/he great?
- As you grew up, was there ever a moment or experience that completely shocked you as a result of not having access to the communication or information everyone else had?
- What did you learn from other deaf people that a hearing person couldn’t have taught you?
- What did your parents do that was really great for you? Any suggestions for improvement? Did you learn anything from them that’s helping you raise your children?
- If you wore hearing aids and had oral training, describe the perfect (audiologist, speech therapist, teacher or other professional).
- If you sign, describe the most helpful accommodations and accessible situation in which you’re communicating with hearing people who don’t sign.
- For signers: should hearing people sign to you even if they’re not fluent?
- For talkers & signers: what basic accommodations should hearing people make to include you in all conversation?
- What would surprise us most about you?
- What are your hobbies? Favorite vacation spots?
- What’s the worst job you ever had?
- Describe a typical day…and your favorite thing to do on the weekends.
- What would you like to be remembered for?
You Should Be So Lucky
Once when Dane was about four, he and Henri sat in the backseat for much of the 12 hour long drive to Grandma’s for the holidays. Normally, I’d have a stiff neck from craning around to find a sippy cup or dropped crayon every five minutes, so I sure appreciated the entertainment and childcare Henri provided back there. I nodded off and woke up a couple of hours later to find Dane still in rapt attention to his “big brother”. Can you imagine what held his interest for so long? DRACULA! Plus every other scary story in Henri’s vast repertoire!! I couldn’t decide if I was more thrilled at all the new vocabulary and extended communication—complete with turn-taking and embellishment—or more horrified that little Dane would be having nightmares for a month (he didn’t).
What I really love about this story (just one of so many) is what it says about the special connection there was between Dane and Henri even then. Few other adults in our world could spend even 15 minutes genuinely engaged in shared communication with Dane at that stage of his life. It was hard work for both parties. So Tom and I were really the only ones going beyond superficial topics and into more depth of understanding and expression with Dane. This encompassed not just spontaneous communication, but specific, mediated language training on daily routines, weather, extended family names and dynamics, social behavior, hygienic practices, homework (even then), soccer and tee-ball, holidays, church (and what the Sunday school teacher meant), did I mention hygienic practices? Plus a gazillion or so life skills and other topics. Frankly, Frankenstein and all the aliens simply weren’t given their due. To our son’s delight, Henri indulged in hours of playful exchange on this and so many other themes of far greater interest to Dane than, well, flossing. This remains true to this day. Henri is a huge part of Dane’s world…of our world. In a perfect world, every deaf or hard of hearing child would have a big brother like Henri. ~
© Leeanne Seaver 2008