We Don't Want Anyone to Know

"You don't want anyone to know he's different, but someone's go to know. You know what I mean?"

 

Last month I was invited to give a presentation to a group of parent facilitators involved in the deaf and hard-of-hearing (DHoH) community around my state. My assigned topic was "Improving Community Turnout at Parent Support Workshops." I don't know much about the DHoH world beyond what I learned from Andrew Solomon's brilliant book, Far From the Tree: Parents, Children and the Search for Identity, but I coordinate a thriving support group in my neighborhood for parents of children with special needs and thought I could use that experience to build a conversation with these facilitators. Given my level of ignorance, I began by asking the parents to share their stories. I was stunned by what I heard.

 

The first parent had two children who were hard of hearing. She explained that she became interested in supporting other parents after she attended a day-long workshop on sign language. Her daughter, the younger of the siblings, was delighted that her mother had learned some signs. The daughter was nineteen years old! The son was twenty-three! What, I wondered, took her so long? The next parent shared that she had dropped her son off at college the previous day. She was proud but also anxious. They had not told the college about her son’s hearing loss, and she was worried that he might not reach out to his advisor: “You don’t want anyone to know he’s different, but someone’s got to know. You know what I mean?” No, in fact, I did not know what she meant. “Why,” I asked in the least judgmental, most ingenuous voice I could muster, “don’t you want anyone to know?” Another parent piped up, “Because you want the kids to fit in like everyone else. They want to fit in.” Nods of assent all around. Finally the last parent told me about her daughter, a high school student who is hard of hearing. “You know, I wish we had encouraged her to learn some sign language when she was younger, because I never realized how much you miss when you’re just reading lips.” More nods. The director of the program confirmed that few parents in the DHoH community choose to learn sign language, particularly if their children are receptive to any sounds, and they are equally reluctant to have their children sign if at all possible.

 

As I said, I was stunned. Forget the PowerPoint about the dynamics of timing, location, and publicity for a support group meeting. How, I wondered, do you serve as an authentic source of support when you have spent your child’s lifetime trying to conceal his or her impairment? * What kind of model can you be?

 

When I shared this story with friends whose children have autism, they were as surprised as I. In our private hierarchy (more about this in the coming weeks), being deaf barely registers as a disability. Perhaps my ignorance is has led to false assumptions, but with the appropriate accommodations a deaf person’s only definite limitation arises if s/he wants to judge a singing contest. In what way can’t the child fit in? So you are DHoH. Big deal.

 

I suppose, though, that “big deal” is a relative response. When I was a child, even wearing glasses carried a stigma. My own children had never heard the taunt “four-eyes” until I told them about my own middle school drama/trauma. Maybe more kids wear glasses now because eye exams are mandatory or perhaps more kids have poor vision, but either way, wearing corrective lenses has become barely visible (bad pun intended!). Glasses may still be aesthetically undesirable, but they are not socially isolating. I can easily imagine the same evolution in response to signing and hearing aids, assuming cochlear implants do not supersede the use of both. We just need parents to proudly "out" their kids and teach the larger society how to share communication.

 

It’s easy for me to judge these parents but, as with most aspects of parenting, the emotions driving their decisions are more universal than some of us might like to admit. Most parents, I think, want their children to be unique and exceptional, but only in a “superior” sort of way. We, the parents, get to be superior by proximity, or transference, or. . . something. Whatever it is, we get to feel special. But if our children cannot be superior in their exceptionality, then they should at least fit in so that we do not suffer feelings of isolation. In other words, we want our children to help make us feel included.

 

Even though I believe deeply that the DHoH parent advocates I met would serve their children and our society better if they embraced their children’s differences, I understand them. I too feel the urge to hide what I feel reflects on me poorly (say, my child's public meltdown) and then frame that urge as a selflessly protective measure for her. It’s an instinct with which I do battle, but I doubt I’ll ever vanquish it completely. 

 

The interplay between a child's and a parent's needs is forever fascinating to me, and I think it's one of the most difficult barriers to parenting a child with special needs well.I plan to explore this theme in more detail over the next few weeks and hope you will join the conversation. Please comment onto the blog post! Thanks.