Disability, technology, and my family

My sister has a new email address.

You might be asking yourself what a blind woman who doesn’t own a computer or a smartphone or really any piece of equipment capable of email-based services is doing with an email address. (And at first blush, I really wouldn’t blame you!) The answer, however, is pretty simple: keeping up with the rest of her family. I mean, I have {hmm… *counting*} six active email addresses right now, including the one that belongs to this blog/pseudonym. I won’t tell you how many computers my parents and I collectively own, but rest assured, we do have a lot between us. Okay, okay, yes, one computer is technically Lily’s, from the days when we were trying her out with the IntelliTools system, but we don’t use it much now. It’s, uh, old. 😉 Anyways, Dad and I regularly talk about tech stuff because we like it, and it’s not like we’re not a tech-friendly family. So I’m not so much impressed by the fact that Lily’s got email as much as the fact that she’s got email, and that I, the remote member of the family, had nothing to do with it.

Lily’s staff set her up with her email address. Honestly, I’d have preferred another domain (I’m picky), but her staff were proactive and did the work, so I won’t complain. They also set up a photo sharing account for her, so that they, my parents, and I can share our photos of her in one place. She gets tech support from the state (I think? I know it’s a service that’s provided for her by some official agency) and we all spend a lot of time talking about how to use technology to help her have a fun, happy, productive life. There’s software that runs on Apple’s iTouch that can help people who have trouble with forming words to communicate with others that we’ve been considering, and Dad and I have talked on and off about how to set her up with a computer at her apartment, and maybe giving her one of mine. My parents bought her an iPod that we’ve never loaded because we wanted to link it to a machine that belonged to Lily. So it kind of makes sense that Lily’s team took her another step into the digital world by setting up an email account for her.

I think it’s also somewhat natural for Lily to want to be more techie because Dad and I are. We used to watch this show when Lily and I were kids, Computer Chronicles, that was more advanced than I was ready for at the time in terms of a lot of the details, but still kept my interest while Dad had it on. Television was generally a family affair for us, as it was simply another center of discussion/analysis/what have you the way that books and food and other things were, so, yup, Lily was often right there, too. I don’t know that any of us thought she was paying attention until the day we started talking about computers and she said she had a CD-ROM. She has also talked about software, the Apple-Q command, and sometimes things like monitors. (I’m not sure how she developed a Macintosh biased vocab before any of us owned a Mac – that’s been my primary OS for a few years now, although I also use Windows and work in Unix environments. We had Commodores and Amigas, mostly, when I was a kid.) She still remembers that Stewart Chiefet was the show’s host, still talks about hardware and software when Dad and I are talking technology. It makes me smile. And, being the person I am, I try to nudge her into knowing more. *grin*

I’m honestly not quite sure what role technology will play in my sister’s life as she gets older. I hope we can find useful tools for her. I know that music moving into a digital format has been a real boon for us, as it has allowed the family to protect our financial investment in music while letting Lily have autonomy over her own CD player. (She doesn’t understand that the CDs we’ve given her are not like tapes, and can’t be flipped over.) And digital music has made it easier to bring along something to help her stay calm and happy in difficult situations, like waiting rooms at doctors’ offices. I regret not having spent more time trying to program the IntelliKeys for her, to open up access to more programs for her, but I never really prioritized it (and maybe the timing wasn’t right, since I was busy trying to get myself started on a career path). (Hopefully, said career path and the computer science I’ve picked up will make it easier to step in and help later, though.)

But what will the future bring? Given the move towards touch screens, what will happen to computer users who have no vision? With the integration of tools, will my sister ever be able to use a computer to help her have a comfortable phone experience? What about people with other disabilities – can we adapt a touchscreen PDA/phone/device to move beyond TTY, or to make TTY easier? (Will Apple’s oh-so-clever iPhone 4 commercial with two people communicating in sign language trigger thoughts about accessibility for anyone else?) With better sensitivity and control of devices, can we help people with motor problems be more independent? I know that social networking platforms have helped me to deal with my anxiety. Maybe other people have stories about technology helping their siblings, selves, loved ones, friends, and ways in which technology has made life better. I hope so, and would love to hear those stories.

And maybe – some day – I can send Lily an email and have her receive it without anyone there in the room to help.

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3 Comments on “Disability, technology, and my family”

  1. […] here: Disability, technology, and my family « Born That Way Comments […]

  2. Lily and Elysia:

    I have so many technology tales!

    And it’s great that Lily has a Mac-based vocabulary for technology.

    (Macs being the education platform and everything…is it possible that Lily and her friends could have used Macs at school?)

    Computer Chronicles sounds like a wonderful show. The show (among many shows) that I would watch was called Hot Chips.

    This is the link for Hot Chips: http://www.abc.net.au/hotchips/

    • Elysia says:

      Oh, Lily definitely used Macs at school, but I don’t think that happened until a couple of years after she started talking about computers with us. 🙂 I guess I should also have mentioned that she talked about the computers that we had at home. Still, it caught me totally off-guard the first time she tossed “apple-q” into the conversation!


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