Words for me: assistive technology, identity and disability

This post is for the “Identity” Disability Blog Carnival.

At the moment I am spelling on my new input device with fingers that are stinging and aching and too thin, gingerly touching Backspace amid every other word to break the stuttering loop of consonant or vowel caused by lifting my fingertip off a sensor it has not completely covered. I haven’t found a typing stick yet.

On a touch sensitive device, the alphabet is a smooth fragile thing and my movement is shaky. But I spell anyway, because I want and because I need, because I don’t have the strength for speech recognition right now. Right now I am not thinking in spoken English. I am, however, thinking of my body and what this transition means for the progression of my disabilities and for myself. As always, changing abilities mark a subtle change in identity.

It struck me the other day that I don’t remember anymore what it felt like to have full and painless use of my functional hand. I have no desire to use a standard keyboard or a mouse. I wear a splint and glove like clothes; I say “barehanded” the way I say “barefoot.” I accepted gabapentin with barely a second thought, and told of the arthritis in my spine I thought of my spasticity and said, “No wonder. What next?” The pain in my crooked legs I’ve had forever has gotten a bit tougher; I take anti-inflammatories as though they were vitamins and am carefully using a forearm crutch.

Obviously there’s more to managing my disabilities than having to use assistive technology on the computer; I just happen to write about tech stuff here. But I do think the technology has changed me and how I think somewhat. For starters, it finally gave me permission to call myself disabled — even though I’ve been disabled my whole life.

I was born hemiplegic, nearsighted, and deaf in my right ear, and acquired scoliosis in my teens. The most I called myself was one handed. I was taught that I couldn’t say I had CP because I didn’t use a wheelchair and could speak, my preference for written language notwithstanding. I received no school accommodations until college, making my relationship with math and science rather angry until I got into logic. What I realized later was that the disability everyone treated as invisible was the catalyst for all the pains that followed. Simply: if one does the work of two, one is going to break down faster, be it ear, arm, or leg. I could feel it happening but didn’t know what it was, having internalized “pushing through pain” and “could be worse.” And so it got worse.

So I bought DVDs and turned on the captions, company or not. I looked up Dragon NaturallySpeaking and started to use it, forcing myself to align written and spoken English whenever I had the cognitive energy. I was stunned when my words flew across the screen. The mechanics of keyboards were never so physically effortless. I had never controlled the computer so quickly. And I learned, gradually, to value my voice even as I kept a space for silence. My voice is a constant tool now, reminding me how difficult using my hand has actually become in comparison. It reminds me I was disabled all along, that I could have used some “help from the world” sooner. And I am so grateful for it now, for what it has let me do.

And now when my voice fails me, when the energy of being a speaking person is too much, I spell on an alphabet that I can’t feel except in space, in the small eggshell gentle movements of my fingertips. Both the alphabet and I are fragile now, some ways. And yet that the alphabet can be made to be so gentle is a beautiful thing. It reminds me of the identity I was born with: word person.

My technology is a sign now of my identity as a person with disabilities. I don’t know anymore where one started and another began, or what else will happen. But at least now, I realize, when someone asks me “What happened to you?” all I have to say is, “I was born this way.” And then I go back to my words.

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7 Responses to Words for me: assistive technology, identity and disability

  1. G F Mueden says:

    “handy”, have you looked at sniff controls?

  2. hand2mouth says:

    I have been keeping tabs on the Sensawaft device, yes. From the Zyxio website, it doesn’t seem to be shipping yet. There might be others; Sensawaft seems to have the most advance press, though.

  3. Pingback: Disability Blog Carnival: Identity « Astrid's Journal

  4. Van Products says:

    It’s inspiring to hear how technology helped you find your voice and how words have become a part of who you are today. I enjoy reading your posts on the different technologies that help the disabled. Technology has helped alleviate the challenges presented for disabled in numerous ways, and I think one of the best is through online communities like this. http://bit.ly/chDWHq

  5. Barbara says:

    Your words gave me improved understanding and your words were easy to read. Your words are effective. Thank you.

  6. Joseph Nast says:

    Thank you for this superbly written and eloquent essay!
    I often give informational presentations about Assistive Technology (AT) to instructors here at the college.
    Also, most of my clients are first-time-in-college students with disabilities who have had little exposure to AT in secondary school. One of my greatest challenges is educating these students about the AT available here at the college, and getting them comfortable with using it.
    May I quote\cite\link to this article for educational purposes? Let me know. Thanks!

  7. hand2mouth says:

    Thank you. Yes, you’re welcome to link/quote/cite whatever you find helpful.

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