What do you want? Part two: Who’s “You”?

The comments on “What do you want? Part one” have already addressed some of the things I want to say in this post; I suggest you read them. Having said that, and in keeping with the theme of this blog, I’m going to tie it to technology… As I always do.

I know full well that ableist attitudes and treatment are not confined to technology and manufacturers. Chances are, if you’re reading this, so do you. Name it: housing, work, language, transportation, architecture, and on and on. It’s a given. When I talk about contradictions or design flaws in assistive technology, it’s as a kind of ableism-in-miniature: those things are reminders of the broader attitudes we deal with, if that makes sense. And then, for me, there are properties of assistive technology itself that make these contradictions particularly confusing. Let me see if I can explain this.

For reasons I can’t get into because they’re numerous, I’ve had to research and find all of my assistive tech myself. I had to read very carefully and pay very close attention to my body. Being a self advocate and a word person heightened my awareness of the language used to market assistive technology. On so many occasions I’ve lost count, I saw that almost no one was talking to people with disabilities themselves. Examples:

Penfriend XP: “There are enough [options] to give you the choices you need for the people you work with… Each one gets it configured especially for them.”

WAVE switch adapted trackball: “For students who prefer to work alone, or in small groups, WAVE is an affordable trackball for plug-and-play access to any classroom computer.”

Program overview of Intellikeys keyboard: “Teachers simply slide overlays over its programmable surface to create keyboards for different students and curriculum areas.”

I know this is not intentional. I realize that there are many people who cannot be self advocates, whether by reason of their disability or their age or some other factor. I know that children and students are a big assistive technology market, and I am in no way against that; I am thrilled that it can be provided so early now. Companies are going to pitch to whomever they think will give them the most money, and special-education funding apparently does a lot of that. Health insurance apparently does the rest. Therefore, companies probably are going to talk to the people giving them money: the teachers and therapists.

What troubles me is that these makers of assistive tech are then also relying on the input of the teachers and therapists more than end-user suggestions. If the teachers and therapists are perceptive, and correctly interpret the feedback their clients are giving them, this isn’t necessarily so bad. But if they are wrong, well, then you start getting into the cookie-cutter trap. I was reading a  discussion thread about switch accessible games for teens. Some of the responses seemed to miss the point that the question was about a growing user integrating with his peers. As Mike Phillips, an adult switch gamer, responded, “If I listened to ‘experts’, I’d be using KidPix instead of Photoshop.”

Assumptions like these unwittingly reinforce the “eternal child” stereotype, the “we need to be spoken for” stereotype, the “about us without us” tendency, and on and on. And on the concrete level, if companies keep hearing from people who work with children, they may not develop for adults. Please don’t mistake me: I know that there’s nothing preventing adults from wanting or buying or using technology that’s marketed heavily for children. I mean, Augie Nieto runs a business using a Big Track trackball, and there are many adults who use the Intellikeys. Etc. If it widens the market, so much the better.

But all the same, the age gaps in the wordings bug me on a bad day. I think, for example, of the kids who lose their devices when they leave school. I think of the fact that accommodations for learning disabilities are geared exclusively to children. I think of the fact that Prentke Romich has only recently geared one of their devices to literate adults. I think, too, of another consequence: the assumption that the teacher or therapist does not also have a disability. Look at the Fusion: Sticky Keys requires a teacher to set up last I checked, because the shortcut is two handed. What if the teacher is one-handed? Even here, they are not thinking of disabled adults.

This talking around the end-user might be unintentional, but that doesn’t mean it’s not a problem, or that it’s not indicative of larger attitudes. So, when I find an assistive tech company with roots, and willing to drill holes in a nice mainstream Kensington, and asking customers what they want, hell yeah, I get a lump in my throat. If they are accepting that we have opinions about assistive tech, and allowing us to use them, they are tacitly affirming our control over our own bodies – something that I and many others lack in many other ways. They are talking to us. WE are us, and no one else is. I say that this should not be rare with assistive tech because it is precisely the tech which helps us to be independent or included, which these companies are ostensibly supporting.

Advertisements
This entry was posted in Disability, Technology and tagged , . Bookmark the permalink.

2 Responses to What do you want? Part two: Who’s “You”?

  1. Elisabeth says:

    My Uni recently hired a new director of Student Disability Services who himself has accessibility needs. He is already advocating adaptability for our labs in a way I haven’t seen at my Uni before, and I think he really puts a face on accessibility at the administrative level. We have plenty of services for students (while they’re here), but they’re only provided if asked and we need to be more proactive to make sure that adaptability concerns a built-in to the system. In addition, faculty and staff have not (as far as I know) had a representative for these needs, the unspoken assumption being that we self-advocate or bring our own adaptive tech. My office helps me as much as they can, but if I don’t know what’s available or whether it works for me, it’s up to me to figure it out. I hope that his public advocacy will improve awareness of these issues.

  2. hand2mouth says:

    That is promising. I hope very good things come of it, and there’s a more equal distribution of information/responsibility/advocacy. Self advocacy can often suck, just by virtue of the time and energy and effort it drains. (I may have come off a bit proud here, which wasn’t my aim; I’m proud of myself when I find something that works for me, but occasionally dispirited that the work falls squarely on me, or others who have to self advocate. I should have emphasized the need for a middle ground.) My employer also assumed I’d bring my own (or continue finding my own as my body changed), and so that’s what I’ve had to do. There was more to it than that, but it’s hard to explain. Suffice it to say I hear you, and it would be wonderful if the concept of workplace accommodations was more thoroughly explained so that employees knew where to go and what steps to take to even ask within their respective organizations. As it is, it seems like discussions often don’t go further than, “Oh, they’re required to accommodate,” or “Oh, your employer will pay for accommodations.” And there’s so much Who and What and How left over. It would be even better if the prospect of accommodations could be part of things like new employee handbooks, or department policy books etc., at least reducing the difficulty of having to ask.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s