Access, info, technology

A few weeks ago a NY Times video/article on "Expanding Options for the Disabled" addressed the expense and difficult insurance issues around people with disabilities being able to access improved technological tools for speech, reading, etc. A lot of these fairly simple tools -- like speaking computer technologies -- are not standard on PCs and are not covered by insurance. The problem in many cases with assistive technology development is not designing or inventing them, it's making them available and accessible. One strategy is "universal" design as a marketing strategy, e.g. making something like touchscreens that are an appealing technology for anyone and also advance usability for people with disabilities. Another is low-tech, affordable tools that might be less technologically advanced but which people with disabilities have been making and adapting at home or in small production for many years.

In access hacker Liz Henry report on visiting Whirlwind Wheelchairs - a great review of the work Whirlwind does making wheelchairs for (and in) developing-world contexts - she describes conversations about sharing DIY tinkering/engineering info. One of the Whirlwind folks mentions having piles of plans and materials but no where to put them; they also discuss how many people have small technical solutions that could be shared with fairly simple instructions, but no easy way to distribute. Liz writes,

I ended up feeling like we were all talking about a similar vision and project. A central repository, managed by a trustable institution that won’t go away, with the information portable, translatable, and with room for comments and input and tagging. Phase 1 might be simply scanning rather a lot of information and sticking it up somewhere that it could be indexed by search engines. Metadata could be added and good OCR correction done on the PDFs, by people hired from a grant and/or by volunteers coordinated in the manner of open source software projects. Phase 3, probably at the same time as phase 2, would be builders and makers, trying some of the projects and posting feedback, which might just be a photo or two of the build or the result, with a paragraph of description. Phase 4 we can think of as the times people improve on an original design in their subsequent builds.

I think Liz really hits on one of the big issues in assistive technology development: information and access. My sense is that there are parts of the design world who are interested in simple instructions, easy DIY products (like ReadyMade, which publishes simple home/furnishing hacks as well as selling mail-order kits; and the whole Make/Instructables world). It really strikes me that this is what Graham Pullin's Design Meets Disability misses (though it raises other interesting issues) - the reality of how people get things, afford them, make them. I'd love to see more about groups like Whirlwind that operate outside of the giant medical technology company world. It doesn't seem like a coincidence that they are operating outside of the US health care system.

Old Houses

It's been a while since I lived in a HOUSE -- a free-standing, non-attached building where I have free range of 2 (3 counting basement) stories. I'm in Newark, DE, for a couple of weeks for the second annual Public Engagement/Material Culture Institute, a part of an NEH-funded program to support graduate students in sharing their research with a broader public. I am renting a room in the top of a small, mid-century (my guess would be postwar) house on a cute leafy street very close to campus. The neighborhood has similar Cape Cods and other revival-ish single- or multi-family houses, many of which are chopped up into collegiate apartments.

Pictured at right: the house where I am staying, a beige-stuccoed house with a low gable and a small awning over the stoop to the left of the picture. Plants are overflowing in the Delaware sun.

Being in this house I am immediately aware of the dimensions of houses built in the mid 20th century. These are modest spaces compared to the "great rooms" of McMansions and even the roving open living/family areas of 60s ranch-style homes. And the doorways: small. 30" doorways -- 32" is the ADA-compliant minimum-- and similarly narrow, as well as steep stairway. It's just a different scale than recent construction.

In the 1940s through 60s, when this housing type was increasingly common, filling the middle-class suburbs of postwar America, people with physical disabilities and their families had to take some creative approaches to make do with cramped spaces and narrow passageways. The polio-generation magazine the Toomey J Gazette ran pictures of a lot of these home-fixing projects, like a ramp pinned to the side of a house, with a trap door so the non-wheelchair-using household members could still use the steps.

(image from Toomey J Gazette, Spring 1961: three shots of a modest, clapboard house with a wheelchair ramp attached to the front. Images show a man pushing a woman in a wheelchair down this ramp; in the others, the man demonstrates how the middle of the ramp can be raised or lowered, adding or removing access to the stoop.)

Back in Newark, across the street from the house where I am staying there is a pretty non-descript rental house with a brick front and porch with a balustrade-- but no handrail down the few steps leading up to it. Someone has added one, a bright red number made of pipe parts. No doubt someone -- a landlord or a resident -- decided this house should be kinder to the tired legs that might be climbing up those steps.

I have been slow to update this blog lately-- oh, the cycle of academic work and procrastination and guilt!

But here is what I've been working on..

The main work I have been doing lately is about the do-it-yourself and small-production technical work for and by people with disabilities during the 1950s-60s. This time period, I find, is interesting for the history of disability-related design because it is a kind of transition time: on the one hand, people with severe physical disabilities (spinal cord injuries, cerebral palsy, polio) were more and more likely to live long and healthy lives with mobility impairments. Medical professionals and policy groups advocated "independent living" as a better choice for recovery and social order, but living in homes and communities was not so easy for folks who used wheelchairs, canes, crutches, respirators, and had manual disabilities. As a result, a variety of gadgets and gizmos appeared to bridge the gap between the ambitions and interests of people with disabilities and the world that was not designed well for them.

A lot of these were published by doctors or other rehabilitation experts as part of an effort to ease the transition from clinic to home, like Howard Rusk and Eugene Taylor's Living With a Disability (Blakiston Co, 1953), which featured low-tech options as make-your-own utensils with secure straps:
(image: black-and-white image shows forks and spoons with metal straps and finger sheaths attached to their handles, scattered on a black ground)

Rusk and Taylor also acknowledged the potential usefulness of new materials and gadgets of the postwar consumer culture, such as children's drink cups (aka sippy-cups) and electric razors.
















(images: two layouts from Rusk and Taylor's book, with black-and-white images laid out around text. Left, three cups: one white plastic cup with a handle, one clear plastic with a white lid and with a hole and a straw, and one with and hand holding a cup with an attached metal handle with a large loop. There is also a clear plastic saucer on the page.

Right, a two-page layout with men shaving with electric razors: one uses a prosthetic hand, while the others hold handles and loops attached to the appliances.)

These kinds of technical fixes for day-to-day independent living also featured heavily in the content of the Toomey J Gazette, a publication "for by and about respiratory polios" that ran from 1958-1969 (before it became the Rehabilitation Gazette). The Toomey J allowed contributors a forum to share very personalized, creative approaches to making their mid-century home life work for wheelchair, respirator, and rocking bed living. The solutions were wide-ranging and sometimes fanciful, like:


(image: an ink drawing of an array of different mouthstick designs, each attributed to its designer. Splayed out in a fan from a central pair of lips, the materials include eye-dropper tips with dowels stuck in them, cigarette holders, even the rubber heel of a child's or doll's shoe to be held in the teeth. From the Toomey J Gazette, Spring 1960.)

Other contributions were more technical, like a Citroen 2 CV that had been cut up to make a flatbed platform for driving in a wheelchair: the car was equipped with two sets of hand controls and a swiveling floor so that the driver could turn around to drive in reverse, rather than having to crane his neck.
(image: three newsprint images of Fred Taberlet and his Citroen, a convertible-top car with an open space for driver and his wheelchair.)

In my dissertation, I write about these adaptations, adjustments, and inventions as part of the broader social context for the disability rights movement: this homespun work is a tacit assertion of the right for people with disabilities to operate and move within mainstream American spaces-- the "right to be in the world" that Jacobus tenBroek declared in a 1966 essay in the California Law Review.

I'll be talking about this research in two upcoming conference talks:

Technocultures and Identity Conference (Mid-America American Studies Association meeting)
Center for Ethnic Studies and the Arts, The University of Iowa
Friday, April 3, 12:30 pm
Panel: Medical Technologies and Identity
Kirkwood Room, 257 IMU
Chair: Michael Krysko (Kansas State)
“Chemical Technology and Emerging Identities: The Role of Technology
and Rhetoric in the Construction of the Hyperactive Child,” Jonathan
Hansen (Iowa)
“Technology and Disability Identity: The Toomey J. Gazette, 1959-1969,”
Bess Williamson (Delaware)

Material Culture Symposium for Emerging Scholars
Winterthur Museum, Wilmington, DE
Saturday, April 25, 3 pm
Panel: The Private Lives of Public Objects
Emily Voss, Cooperstown Graduate Program (Museum Studies)
"Astronauts, Aliens, Rockets, and Ray Guns: Space Toys and American Children 1950-1977"
Bess Williamson, University of Delaware (History of American Civilization)
"Doing It Themselves: Gadgets for and by People with Disabilities, 1945-1970"Drew Sawyer, Columbia University (Art History and Archaeology)
"The Queer Life of Crisco"Commentator: Peter Stallybrass, Professor in the Humanities and Professor of English and of Comparative Literature and Literary Theory, University of Pennsylvania

disability and creativity sites of interest

The Missability Radio Show A WGBR-Boston radio show about disability and creativity. I love the whimsical and crafty aesthetic on this website and need to catch up on some radio shows on it ASAP. So many creative projects worth mentioning after just a few minutes on the site.. a Walking Stick Cosy Competition, an Etsy store, and much more... the use of old-time radio/entertainment aesthetic is apt for radio stuff, of course, but also seems to subvert the freak show history of early 20th century pop culture.
(image from Missability.com is of a handpainted cardboard sculpture of an old-time radio with red stripes atop a table covered with a handmade quilt that reads "Missability")

Also via Missability: Pimp My Guide, 2 videos on YouTube about customizing guide dog harnesses.

Access Hacks. I first saw this link-filled, fact-packed post from Liz Henry's blog somewhere out in cyberspace, and since have followed her links to a bunch of other places, including...

Gearability, a blog by woman named Marty, who writes about caring for her stepfather as well as having her own health concerns. The blog discusses everything from electronic calendar use in a nursing home to wheelchair cupholders. As an avid reader of sites like Ikea Hacker, I really dig how she seems to see every product, material, gadget out there as fodder for redesign and customization.

On a non-DIY note, fans of Wallace & Gromit must check out these Creature Discomforts PSA spots from British TV.