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Sep20
The Generosity of the Local Deaf Community
I have been deeply moved by the generosity and kindness of the Deaf community in my area. Every single person I’ve contacted has been friendly and supportive. Every single person I’ve emailed has focused on my concerns and given me direct, practical answers.When I first made contact with the local school for the Deaf, I left the following message on its website:“I’m a 51-year-old woman with recently diagnosed Asperger’s Syndrome, a form of autism.One challenge associated with my autism is a sensory processing disorder that causes all sound to come into my system at the same high volume. As an adaptive measure to keep myself from being housebound, I have begun wearing noise-blocking headphones and living much of my life in public as though I were deaf and not able to speak. Finding community under these circumstances is very difficult. I am thinking that ASL might give me a way to communicate with others and not be so isolated. I am wondering whether your organization or community would have any resources for people with an auditory disorder like mine. Any suggestions would be much appreciated.”(When I wrote the email, I was still using the term “disorder” without much concern. I’m now attempting to banish it from my vocabulary.) The very next day, I received the following message from Karen, the school’s Director of Development and Public Relations:“Hi Rachel,What a creative way of handing your noise challenge! I’d recommend you check out the DeafVermont yahoo group which posts a wide variety of local social events and news: http://groups.yahoo.com/group/DeafVermont/. My colleague will contact you regarding our Brattleboro ASL classes.Would you also like to be put in touch with someone for work-related assistance?”After thanking her for her email, I asked whether I might be able to find some volunteer opportunities at the school. I again received an immediate response:“Hi Rachel,Your offer of volunteering is wonderful! Thank you. I’m going to talk with some of my colleagues and get back to you about that. How much time would you want to spend here and what hours?In regards to ASL, even before signing up for classes you could try it out by taking an instructional video out from the Brattleboro library. Videos are better than books because many signs rely on motion, which makes them hard to display in print. (BTW, we have a school here for autistic, nonverbal children, not all of whom are deaf, who communicate via sign language, so you’re right that ASL can be an effective alternative communication tool.) Just so that you know what to expect, ASL has its own grammar and rules so learning fluent ASL generally takes people several years. However, you’ll probably feel comfortable with a basic conversation after one class…”In a follow-up email, she suggested that I might enjoy volunteering at the school library or helping to work on the school’s email newsletter. I began an online conversation with her colleagues about volunteering, and then wrote to Karen about my most pressing need:“I’m looking for some guidance on how to navigate the world ‘out there’ without hearing. I feel as though I am lost between two worlds: I can no longer go about my life in public as a hearing person, but I have not asked for any guidance about how to proceed from there. I’ve been coming up with my own strategies for doing simple errands, and I’ve signed up for the ASL 1 class, but I’m feeling very anxious about venturing into more unstructured situations (like browsing a book shop…). How do I communicate when I have a question or want to give information? How do I signal that I can’t hear if someone asks me a question? How do I let people know what I need or want? Right now, these questions feel very overwhelming.I wonder whether someone in the Deaf community would be interested in exchanging some emails with me about how to go about these things. It would really help me to hear about strategies from someone who has more experience than I do. If you could put me in touch with someone, I would be very appreciative.”In response, Karen suggested that I contact Will at Voc Rehab, a state government agency that helps disabled people in Vermont obtain job retraining and employment. She felt that he might be able to guide me. When I sent him a message, and explained that I do best by written communication, he was only too happy to set up an email appointment.To begin our discussion, I sent him a list of questions. Following are my questions, together with his responses:Question #1: When you are out in the world, walking through town or looking at items in a store, how do you communicate that you can’t hear if someone tries to talk with you or ask you a question? I have a lot of anxiety about this particular issue. I am afraid that I will feel so awkward that I’ll be tempted to take off my headset and talk, despite the acute impact on my system. If I have a strategy in place for how to respond, I will make a much better choice.Answer #1: I recommend that you carry a pen and some paper with you. That way, you can write notes with people if you are unable to decode what they’re saying to you verbally. I have a blackberry with a feature that allows me to type notes to people.Question #2: How do you communicate in, say, a bookstore when you have a question or want to give information to someone?Answer #2: I write back and forth with store reps.Question #3: How do you do a task requiring a lot of back and forth communication, such as opening a bank account, without hearing or speaking?Answer #3: I write back and forth when I’m in a bank. However, so many services are available online now that I can do bank business, shopping, insurance adjustments, etc. online. If you prefer to go to the bank or another place in person, writing notes might be ideal. However, you would need to ask the person to look at you directly and speak slowly if you guys communicate verbally. It also helps to do business in an area where the lighting is decent and there is less background noise.Question #4: Do you have any suggestions for a short answer I can give when a person asks whether I am deaf or hard of hearing? I am neither, in the usual sense. In fact, I am all the way on the other side of the bell curve: my hearing is so acute that my experience of sound is aversive, and I have to block it out. Once I’ve blocked it, though, I am very hard of hearing. You see the problem.Answer #4: You could say something like “I cannot hear well” or “hearing is hard for me.”Question #5: I don’t much like using the term “disorder” to describe myself, any more than Deaf people like the term “hearing impaired,” and yet, “auditory processing disorder” is the only term that seems to make sense to others. If you have any suggestions for more positive terms, I’d be happy to entertain them!Answer #5: I’m not sure if it’s imperative that people with hearing loss label themselves as deaf, hard-of-hearing, late-deafened, etc. Everybody’s a bit different and has their own traits/needs. You could always describe yourself in a way that you want people to view you (emphasize good personal qualities). If you’re looking for specific words to use instead of auditory processing disorder, I’d suggest saying something like “I have hearing loss” or “I have a hard time hearing.” Even though you don’t actually have loss inside your ears, you still have hearing loss beyond your ears.
Yes! I have hearing loss beyond my ears. Of all the suggestions he gave, I liked “Hearing is hard for me” the best. It’s absolutely true, and it’s very concise. So, later in the afternoon, I updated all of my “I can’t hear you” cards, removing the term “hearing disorder” entirely. The updated cards look like this one:
Hello—
I am wearing these ear protectors because hearing is hard for me.
My shareholder number is 1234.
I will bag my groceries
myself.I will use my debit card with no cash back.
Thank you!
5 Comments
When I went to my second ASL class on Thursday night, I wore my most effective Peltor headset with a pair of earplugs. The combination allowed me to block out all sound almost entirely. I could only hear the interpreter’s voice on a very low frequency, as though she were quite far away, and the laughter of my classmates when the teacher made a joke. (The teacher, by the way, has an excellent sense of humor, and sometimes it seems that we are laughing as often as we are signing!)At first, it felt strange to hear virtually nothing, and I got a little sad about it. But then I thought, “This is the reality of my life. I can either be paralyzed by it, or accept it and adapt to it.” Because I protected my ears so well and did not use my voice, my experience of the second class was much better than my experience of the first one. I began to understand why some autistic people just stop talking altogether. It was a tremendous relief to be able to focus on my greatest strength—my visual sense—and to leave listening and verbal communication outside the door. I like to speak and to listen to my family and friends, because they know me and they are willing to slow down their words for me. But out in the world, I am much better off keeping speaking and listening to a minimum.
The people I’ve contacted in the Deaf community understand that I have difficulties with my hearing, and they’re taking it seriously. I have to do the same. Although being in a room with fifteen other people is tiring, I’m determined to keep going. Fortunately, ASL is so interesting to me that I can’t wait to learn more!
© 2009 by Rachel Cohen-Rottenberg
5 Responses to “The Generosity of the Local Deaf Community”
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HooRay! You’ve found a community of peopple willing to accept you as you are. Truly you are blessed. Glad to hear such happy news.
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this is really, really cool. you sound much happier about this ‘issue’. i would never have thought of utilizing ASL educators, workers and the deaf community in this way. colour me impressed, and making a mental note of your perseverance in the face of your (our) often debilitating super-hearing.
*smile* -
and also, in awe of your guts for tackling your super-hearing head-on, for wearing those giant earphones to protet yourself, and for making such a life-altering change to your behaviour. sometimes we have to hit rock bottom on an issue before figuring things out and making a change.
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Thank you for writing this, Rachel. Great practical advice, I’m glad you’re approaching it “seriously,” as you wrote, and it will hopefully help many other people who have been avoiding situations that will overwhelm their hearing.
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That is a very creative solution! Man, you’re amazing. How very cool that this community is accepting you and willing to help you. I think that is awesome. Keep it up.
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