Monday, October 5, 2009

Am I not independent?

Hey, so a little housekeeping before I go into my fabulous story. I put a subscription by email box on the side bar so you can get notification when I post something new.

So I was at yet another technology fair for people with disabilities. I was cruising around with my aide when suddenly I got stopped by a guy with cerebral palsy who worked for Dynovox (he used a Dynovox himself). I should let able-bodies know that Dynovox is a company that makes augmentative communications devices or AAC's-think Stephen Hawkins's voice. He asked me if I was interested in getting a Dynovox and I shook my head no (my board was in my backpack). He then asked me why I didn't want one. I signaled to my aide to get my board and the following conversation ensued:

"I like my letter board."

"Don't you want your own voice?"

"My board is my voice."

"But you're not independent. You have to rely on people to read it."

"I don't think that makes me less independent because I always need full time assistants to accompany me in public. So they can read out the board and the conversation has a better flow."

"But you are dependent on them."

"I don't see it that way."

He was stumped and gave up , but not before giving me a disapproving look. The topper was, as soon as he rolled away he summoned his aide to help him drink -after lecturing me about being independent.

There are two reasons I told you this. The first is it's funny and it shows that even people with disabilites can discriminate against each other. The second is because many of you have asked me (in a much nicer way) why I do not have an AAC device. You are probably thinking that it would make life so much easier because I could tell people off directly, show them I'm smart, and not rely on others to translate for me. However, partly because of how I would have to use one of those AAC devices (with an infrared sensor) it would take me about 5 minutes to type out a sentence. That would either make people leave because they don't realize that I'm about to say something, or be so in awe of the technology that they don't really hear what I have to say.

Another view I have encountered (from both the disabled and non-disabled) is that people assume that since I don't use an AAC, I must be lazy or too dumb to operate one. I have actually learned how to use one but it did not feel right to me. I was 14 and my dad insisted that I learn to use one (he actually paid me!- a great way to get a teenager to do something). However, he was pretty surprised when I refused to take it with me on the first day of school that year.

My board is so much better for me because of a few reasons. First, it's extremely portable and you can make one on a whim if need be. Second, it doesn't have technical problems- I know a few people whose AAC device broke and they could not communicate for a few days. Finally, and most importantly, my board gets people to get to know me rather than just ooooing and ahhhing at the technology. It's very interactive and any literate person can learn it in like 2 minutes. Even if someone is having trouble reading the board (and this happens frequently at first), my aide can always be there to translate.

I know some people have great success with AAC devices and I am in no way bashing those that choose to use them. This is just what works best for me. I hope this explains your wonderings.

For those who have not seen it, I posted a video of me using the board on my very first entry. Here is a link:


  1. My father has a chronic illness/disability, and I know all about the well-wishers who are anxious to inform us about "this latest treatment they just read about in Time Magazine!"

    Yeah, people are trying to be helpful, but it's kind of insulting for someone who isn't dealing with a disability or chronic illness on a day-to-day basis to assume that we're not way WAY more up-to-date on the latest science and technology than they are.

    (By the way - I admit that I was curious about why you don't use a device "like Stephen Hawking uses", but I would never ask because I assumed that you had your reasons and that they were good ones!)

  2. I can't believe all the stuff you have to justify to people when you're the one with the disability.

    I was temporarily 4 years ago, including my vocal cords, and I couldn't speak for 2 and a half months. I could mouth words and use a letter board by blinking as someone pointed to the letters. Communication was the hardest part of being paralyzed. I felt I had to bend over backwards to help everyone understand ME when they were the ones who could talk and hear (I'm hearing impaired too, since birth).

    I applaud you for doing what's right for you and not letting the idiots get to you.

  3. Every assistive technology decision (I count simple non-electronic things like canes, magnifying lenses and letter boards as assistive technology) has both advantages and drawbacks.

    I can think of many reasons why a person might prefer a letter or picture board with a human interpreter to an electronic device. A piece of paper doesn't have as many complex parts to break, and even if it does break (get torn or dirty or wet or whatever) it's cheap and easy to replace. In a pinch your aide could probably grab a scrap of paper and write the alphabet on it. People are less likely to want to steal it (I've heard of it happening). Security-types don't treat a letter board like a potential bomb.

  4. I forgot to add that many people have difficulty understanding synthesized speech, even the high-quality kind.

  5. Hi. I remember being fascinated by the letter board in your first post, and wonder if you could do a post explaining how it works (or just point me in the right direction -- I tried searching online for "letter board" but had no luck). It looks like there are rectangles running along either side of the board, but I couldn't make out what they each indicated. Also, are there specific shorthands involved, or do you just start spelling out what you want to say until your assistant can figure out the complete word or phrase? Thanks for elucidating (if you choose to do so), and thanks for the great blog.

  6. Whatever you are doing to put words here is working for me.

    Nice to meet you. I'll be back. :)

  7. I knew someone who used a homemade letter board. He could speak somewhat, and over time, we could communicate just fine. I did wonder why he never got an AAC, but what you said makes alot of sense!

    Though my issues are different, my mom is always suggesting what "cures" to try or what "illness" I might have instead of what I really have. People have been shocked when I wasn't on meds, then when I was on meds.

    You just can't win with some people!

  8. I find it strange that he would feel relying on someone to read your board made you less independent. If you had a speaking device, you would have to rely on people to listen to you. Communication always depends on both parties, no matter what format.

  9. We are in the early stages of finding a way for Alice to communicate, but I wanted to say that I agree with your comment about technical difficulties! We would sometimes spend an entire speech therapy session trying to get the dang computer program to LOAD--let alone trying to teach Alice how to use it! There are many great devices out there, but you're right, people have to use what's right for them :)

    --Brandie from LJ

  10. A Deaf person couldn't lipread a "Stephen Hawking" device, now, could they? But a lipreader (and I realize not all Deaf people do this) could communicate somewhat with your aide.

    Not to hijack your thread, but have you read this open letter about ableism on Feministing?

  11. Eva, I am really enjoying reading your blog, my son is disabled and it gives me a totally different perspective to read about your journey and learn about different ways that he would like to be treated. You are also very funny and I am thrilled that you've decided to have this blog! Thank you!
    I nominated you for a Lemonade Award:

  12. I love your board! It's way fun. The freudian slips alone.. LOL. I'm also a big fan of real-time interactive stuff.

    It seems there are many reasons why people with disabilities might get sensitive about "needing help".. our society has issues! I know I struggle sometimes with feeling "weak" when I'm not capable of plowing through life on my own. It's total BS though. Asking for help is part of being a grown up and owning your needs, whether they're physical, emotional, spiritual.. we all need each other. That's part of the fun of friendship, sex, love, family, all the *good* stuff in my humble opinion..

    Dang I'm such a hippie. Love your blog. Miss you!

  13. Eva, the only part I don't agree with is the drinking and talking that you referred to, using the AAC. Isn't it true that most people using AAC need help drinking and eating, amongst other activities of daily living? I like your board, and I always have. I like the way you communicate, and respect it. I also respect the AAC user. I stand by and have learned a whole new way to communicate with people. Between your board, and AAC, it has opened up a whole new world to me.


  14. I whole-heartedly agree with Dan! You can't beat real-time interactive conversation. While I do see the advantage of having an AAC device in some situations, I much prefer reading your board because once you get it, the conversation goes really fast and your personality & quick wit really come through (via choice of words, favorite expressions, syntax)...also I think that it arranges the conversation in a way that is advantageous to you. Instead of people having to wait five minutes for you to type out a short sentence, you are the one exercising patience and waiting for the reader to learn the board.

  15. Hello, I've just found your blog and I think you're an amazing woman. Your blog is bold and eye opening... I'm a disabled person as well, I've been bed bound for over 6yrs because I'm very sick and I understand what you're going through in a way.

    I'd like us to exchange links if you wanna.

  16. How would you communicate with a visually impaired person?

  17. Hey Eva, another AAC user here.

    I was wondering if you've had a chance yet to trial an eyegaze system - pretty new innovation and particularly potentially relevant to you is that it is direct access with your eyes, as if you were pressing buttons. Totally different to and much faster than the switch scanning you describe. Spose what I'm getting at is that unlike everything else, you'd be able to use one in the same way as you currently communicate, less the involvement of the third party. Food for thought?

    I do a lot of communicating via my PA (personal assistant, like an aide I guess) too, depending on what's quick, easy and available to me at the time. I find that getting people to just LISTEN is by far the biggest communication barrier I experience, most days.

  18. Oh, I'm so sorry to hear about this! I know a few people who work for that company and they're fabulous, wonderful people. I know that doesn't really mean anything in the long run, and I'm not defending them, just saying I'm disappointed that their public face is that of such an asshole! You'd think the people they send to conferences like that would know better.

    If you like, because I know some people that work there, I can tell them about your experience--but I would never do that without making sure first that you're okay with my doing that. I mentioned this to my husband, through whom I know the folks working there, and he said a lot of that company's business is done through Medicare, and he wonders if the knowledge that many of their customers pay for their equipment through Medicare makes them see them as lesser. I hope that's not the case!