Saturday, March 19, 2011

A Consecutive Kind Of Life

I just finished a book called "Of Such Small Differences" written by Joanne Greenberg. The story is told from the point of view of a Deafblind man in his mid-twenty's. It was written in the mid 1980's so it is not, from a technology standpoint, very relevant to now. All of the characters in the book appear to use
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with some ASL signs thrown in at times. I think the author of the book is hearing, so it isn't a "real life experience" of an actual Deafblind person; such as the books written by Helen Keller or Robert Smithdas. It's very obvious that the author did her research and for its time, the book is pretty accurate.

People ask me all the time, "What is it like to be deaf and blind?" and reading this book helped me to answer that question more fully, I think.

Hearing/seeing people have multi-tasking lives. Take one of my best friends for example. I've seen her in her kitchen, whipping up a marinade with one hand, while her other hand holds a phone. She is scrolling through her text messages while talking to her husband or kids. There is a TV on and in between stirring the marinade, reading texts, talking to her family, she manages to catch what is on the television and she laughs at a joke, or swears at yet another hopeless politician. This same friend gets into her car and drives. She is talking to a coworker on the hands-free phone, while taking notes and yet she manages to spot one of her kids squirting the other with a packet of ketchup she found on the floor. This is normal, this is everyday life for most people, all of this multitasking.

A deafblind life is a consecutive life. When I cook, I am cooking. I cannot take my phone into the kitchen because it is connected to my braille display which is very fragile, and if it breaks the repairs will take at least a month. It is vital to my independence for me to have a working braille display so I try very hard to keep it clean and that means keeping it out of the kitchen. If I need to write down a recipe, I write it in hardcopy braille on sheets made of thermoform which is a kind of plastic. This way if I spill on the page I can take a damp rag and clean it off with the braille being no worse for the experience.
When I am cooking, I am focused on cooking. I can't have a conversation with my hands because more than likely, my hands are buried to the wrist in ground meat or dough. Cooking, like everything for me, is a very tactile process. I can't hear tv, I can't hear music unless it is patched through the TCoil on my hearing aid, and through a neck loop to my iPod. I hate wearing my hearing aid at home so that means no music. Cooking time is for cooking.
When I'm done with cooking, I can then have a conversation with my husband, and then I might open up my computer and look at a website for the news, read my email, pay some bills.
When I'm done with my computer I put it down, move to the phone and braille display to check texts there. My friends who text find this very frustrating. When you are hearing/sighted, texting is instant. You get a text, and you pull your phone out of a pocket, quick tap out a message and put the phone back; moving back to the task you were just doing. My phone is an iPhone connected via bluetooth to a braille display. This setup is the size of a video cassette; remember those, back when dinosaurs roamed the earth? :) Its very size means that I can't just put it in my pocket. I can't briefly check messages and just move on to what I'm doing. If I'm in the other room, or even across the room from my phone I don't even know if I've gotten a text unless one of the dogs or my husband tells me. It takes longer for a deafblind person to have a text conversation unless I've decided to sit down and make texting my focus for that period of time.

When I walk places, I am paying attention to what is around me; the feel of the sidewalk, the positioning of the sun, the textures my arm encounters when I walk. These are all things which give me confirmation of my location. When I get to the street, I pick up my tactile mini-guide which has been hanging from a cord around my wrist. It is a small unit-- about the size of one of those containers of Airborne you buy at the drugstore. It vibrates when it detects obstacles in my path. The nearer the obstacle, the stronger and quicker the vibration. I use a tactile Mini-Guide to help me read traffic patterns so I know when it is safe to cross the road. When the cars are going in front of me, I will feel the slow-quick-slow, slow-quick-slow pattern of vibrations as the cars move by. When the cars to my side are going, I won't feel any change because my path is clear to cross.
When I'm walking, this is the time for me to listen to my iPod. I turn it off at street corners so I can focus on making a safe crossing, but otherwise, walking time is music time for me. It is very hard for me to have conversations either in ASL or spoken English while walking because if I'm going to sign while walking, it is best for me to go sighted guide with the person I'm chatting with. I don't like going sighted guide because I feel like I already give up too much control of my life to too many people. When I walk, I want to do it myself with my dog. Sometimes I will go sighted guide with people I trust a very great deal, usually at Jazzfest with my ASL interpreters, sometimes with my SSP if we need to talk and walk at the same time.

I can't really communicate in spoken English because I hate using my hearing aid on its regular setting when I'm on the street. I can only use amplification in one ear, as the other ear can't hear at all. This means that I don't hear in stereo. Hearing in stereo is what gives hearing people the ability to locate sounds, and use sounds to orient and navigate. Having the use of one ear means that I can hear sounds-- usually only the loud ones like noisy car engines or cars backfiring or police sirens. But because I have no ability to tell where the sound is located, all those loud sounds seem to be right on top of me. I feel like I'm about to be run over at any given moment. Because I am blind, I can't rely on my vision to tell me otherwise. The entire experience is terrifying and makes me cringe away involuntarily which just confuses the hell out of my dog who can't figure out what the problem is.

It is better for my nerves if I just set my hearing aid to TCoil, which blocks out all sounds except for what is coming through my neck loop from my iPod. I can walk and enjoy music while Laveau takes care of the hearing and the seeing. I still need to be oriented-- have an idea of where I am and where I'm going, but I don't need sight nor hearing to do those things.
I think my life would make most hearing/seeing people nuts. It would probably seem very methodical and slow, without enough stimulus. Then again maybe not. I find that living this way helps me to be present in the moment. I think that Buddhists call this mindfulness. For the most part-- deafblind people live very mindful lives.


  1. Would the tactile mini-guide be useful to a blind hearing person? Are they expensive? I've never heard of this device.

  2. Thank you for sharing all of this. It gives us a great glimpse into a world not many understand.

    Brooke, Phoenix, Cessna, Aspen & Canyon :)

  3. Sendero Group used to sell it. I just looked at their website and they don't appear to sell them any more. Many hearing people do find them useful. I know that the RNIB is now selling something called "iGlasses" which are glasses you wear which perform the same kind of function as a miniguide.