online disability history

Image: Grey Sweatsuit, hanging in exhibition case with shelves of folded, identical suits next to it. From "Out from Under: Disability, History and Things to Remember," at Ryerson University.

From the quote accompanying this piece in the exhibition:

[T]he memory that has stayed with me so powerfully is that of the singlemost prevalent institutional “outfit”—the ill-fitting, nondescript, grey sweat suit. In choosing this “object” I was struck by how the sweat suit—devoid of any labels, markers or designer logos— represented the monotony and routines of institutional life.

Preparing a talk on the history of assistive technology and innovation recently, I drew on some great online resources for some of my older images and stories. It made me realize I had some across some of these sites entirely by accident, via links to links to links.. and maybe it would be helpful to compile a couple of them here.

I would love more links, suggestions, etc in the comments!

Top 5 Disability History Websites
Note: all of the sites below include image captions and are (I believe) screen reader accessible.

National Museum of American History: Disability Rights and Polio exhibitions. These sites provide ongoing access to two wonderful exhibitions curated by Katherine Ott at NMAH. I also recommend the volume Ott edited (along with David Serlin and Stephen Mihm), Artificial Parts, Practical Lives: Modern Histories of Prosthetics as one of the best (only?) history books on technology and disability.

Disability History Museum: an ongoing, ever growing online database of images and text related to a long history of disability (mainly US oriented). Strengths in ephemera (photos, clippings, brochures) on everyday life. Use the sidebar to search by keywords, time periods, etc.

Bancroft Library (UC Berkeley) Disability Rights and Independent Living Movement Collection: Excellent, cross-reference-able source for primary source documents, (some) photographs, and an unbelievable oral history collection related to the Disability Rights Movement (mainly American and Californian). Easiest to get to are names and organizations, many of which have short audio/text clips from oral histories. To go deeper, the full texts of the oral histories are also available - providing hours (or months/years) of reading material. A highlight for Disability History scholars: the late Paul Longmore's oral history - providing a very rich, deep discussion of his and others' origins in disability studies scholarship.

Ryerson University's Out from Under: Disability, History and Things to Remember: This is really more of an experiential site than one with hard facts and famous names - looking at specific objects and short texts that evoke Canadian disability history (such as the sweat suit above). Great images and everyday object interpretations - particularly covering the history of institutionalization and intellectual disability.

The Missouri History Museum's Action for Access: Changing Perceptions of Disability in American Life: a friend recently pointed me to this site, a multimedia presentation on current and recent past perspectives on disability. The "disability rights movement" tab includes a recap of disability history in the US in general, with a special focus on Missouri. A great example of how deeply local disability history is. Includes historical images, videos of people with disabilities telling their personal stories, and reference links.

Honorable Mention
these sources are more limited in focus - but still good sites to hit for disability history.

Museum of disAbility - a virtual museum with artifacts and documents on disability history. I find their interface a little overwhelming, but there are good materials to be found (similar scope/content to the Disability History Museum, above).

Disability History Timelines - someday I would love to see (or make) a compilation of all the disability history timelines I have seen. In the meantime, here are two:
Timeline from the ABC-CLIO Companion to the Disability Rights Movement by Fred Pelka
Timeline from the Disability Social History Project

The New York City Origins of the Disability Rights Movement (link goes to audio mp3 - for the main site click here; no transcript online) - a talk from Warren Shaw, historian of New York City whose father, Julius Shaw, was an early disability rights activist. Very interesting story that has not really been told in standard disability history books/timelines.

Temple University's Disability Studies Blog - posts and links about disability studies and disability history

H-Disability - email listserv for disability history discussion/posts

ooh / ah.

- ooh! Tennis champ Esther Vergeer poses nude, embracing her tennis racquet, in her wheelchair on the cover of ESPN magazine. Commentary here:

While we're hard-pressed to celebrate the reveal of a bunch of hard-bodied women like it's a major coup for femininity, a spokesperson for the magazine said: "ESPN The Magazine's Body Issue is a celebration and exploration of the athletic form, honoring athletes of diverse shapes, sizes, colors, genders, and race."

...

the paraplegic has made kicking ass her business since childhood. She recently won her 396th straight U.S. Open match in her chair.

- ah. Last week on This American Life, there was a segment on people with disabilities suing businesses for being out of compliance. It was on a show titled "Crybabies," but I would say that, on balance, it approached the issue pretty well. It edged into questioning whether suing small businesses for seemingly small instances of noncompliance (coat hangers or mirrors too high for wheelchair users, e.g.) is fair or even effective, but ultimately pointed out that this is basically the only way that the ADA can get enforced after the building permit phase is over. One business owner complains that he would have changed the height of the coat hook had someone just asked him, rather than suing, but the counterargument is implied as a woman tells the story of repeatedly asking her hair salon to provide wheelchair parking (they do initially, then repaint the lines to make two standard spots) to no avail.
Click here for full episode (story starts at about 33 min).

links - art/design edition

Cool artist-in-residence project with inside views of Smithsonian collections: Tracy Hicks

D-Crit conference keynote: Peter Hall, "The Uses of Failure":
a failed design is often one in which all the wrangling, hidden agendas and vested interests that preceded it are laid open for inspection

Customize Almost Anything You Can Buy to Fit Your Tastes, Lifehacker

On the Metropolis magazine blog, Emily Leiben on Two Decades of Living with the ADA

quick and should-be-easy

Memo to journalists, bloggers, and other writers everywhere: language like this is soooo yesterday (or several decades ago):
Polio-stricken architect worked on raising accessibility awareness, from the San Diego Union-Tribune.
"When Berenice Bernard was stricken with polio in 1951...
"Confined to a wheelchair for the rest of her life..."
I mean, really? Thanks Blanca Gonzales for covering this woman's obituary, but you couldn't have updated your language?

Here's an easy guide to appropriate language, from the Smithsonian's Guidelines for Accessible Exhibition Design:

Yes / No
People with disabilities / The handicapped, The disabled
People who are deaf or hard of hearing / The hearing impaired, deaf mute
People who are blind or have low vision / The blind, The sightless

Wheelchair users / Confined to wheelchairs, Wheelchair bound
People with mobility impairments / The crippled, The lame
People with intellectual disabilities / The retarded, The mentally deficient
People with mental illness / schizophrenic (as a generic), the insane
People with learning disabilities / dyslexic (as a generic), the retarded

what is good architecture?

A couple of interesting links...

First, Paul Goldberger and Richard Cook discuss sustainable architecture for The New Yorker. Cook is a principal in Cook & Fox, designers of the new Bank of America Tower, the largest building ever to receive LEED Platinum certification (the highest energy performance standard).



they discuss a lot of things - but I find the beginning, when they discuss the "next levels" of green building, particularly notable. Cook talks about how better energy performance, materials use, etc will cease being "green" and start being the "normative standard." But the bigger challenge, he says, is for buildings to be regenerative, to improve quality of life. This part might represent a trade-off - e.g. that creating the best possible air quality requires energy-expending filtration systems. Of course, he doesn't (can't) touch on the really big conundrum - that these supposedly most-humanistic-possible buildings are giant office towers, but this is true for a long history of making spaces more comfortable - ergonomics creates safer workplaces, better productivity, and so on.

Another issue Goldberger and Cook raise is about the LEED standard itself - many have criticized it because it does not necessarily reward innovative design, but rather to-the-letter technical performance. There are so many comparisons to ADA standards there - likewise, some architects have argued that the ADA is not necessarily equipped to evaluate a broader definition of Universal Design, vs. a rigid conception of access (though frankly, I would like to see a building or feature that really offers excellent accessibility and is not ADA compliant). It would be great to see a discussion of sustainability - as a design approach, not a technical standard - that incorporates accessibility as well - as a part of the human health considerations that go into these extremely high-design, high-cost sites like the Bank of America building. As Cook describes, he sees a sustainable approach as leading to ways of making an office building "feel fundamentally different" - for me, this point certainly raises a host of issues about what we expect of design, in terms of environment, experience, comfort, health, and otherwise.

Another quick link - Metropolis points us to OpenBuildings, a "crowdsourced" architecture info/criticism site. On this "mega-resource," Metropolis reports, "readers can submit buildings to the site and upload images, additional information, or even their own opinions." So far it looks like most buildings just have excerpts from either Wikipedia or a more official architecture review source. But - what possibilities for a user-level impression of these sites! It would be so great to see this forum used for accessibility reviews, and other insights that only members of the "crowd" can point out. I think I'll download the app to see what there is around my city..

Remembering Paul Longmore

I was sad to hear yesterday of the passing of Paul Longmore, a leader in the field of Disability History. I have gotten to know Paul over the past three years as I work on my dissertation about disability rights and design. Reading others' remembrances of him online, and talking to fellow young scholars, I know I was just one of many who consider him a great teacher and mentor. Berkeley lawyer Lainey Fairgold wrote on her website that, reading and speaking with him, "I could actually feel my mind opening up to new ideas, new ways of perceiving the world." I have felt that many times as well.

Paul was one of the most generous scholars I have ever met, always willing to chat with me - sometimes for hours, as we sat in the sun outside of his San Francisco State office or in his apartment. As a non-disabled person with little experience in the disability community before I started my dissertation, I felt tentative about my project when we first spoke. He was immediately supportive, and over time was very forthcoming about his own life history and the ways it overlapped with the work I am doing on the everyday lives of people with disabilities in postwar America. I came to think of him as a friend as much as I did a professor - until I would return to his written work, and, like Lainey says, I could feel my mind expanding. His insights on practices of history writing - for example, in his essays on the League of the Physically Handicapped and on the reformer Randolph Bourne, both in the collection Why I Burned My Book and Other Essays on Disability - are seminal works for any historian of 20th century America.

Paul was an accomplished scholar in two fields: Early American History and Disability History. After he completed his MA and PhD at Occidental College and Claremont Graduate School, Paul taught at Stanford and USC before coming to San Francisco State University in 1992. He received tenure in SF State's History Department in 1998 and directed the Institute on Disability starting in 1996. He published The Invention of George Washington, based on his dissertation, and a collection of essays, Why I Burned My Book; at the time of his death he was nearing completion of a new work on telethons. He edited The New Disability History with Lauri Umansky, and has been the organizer of countless conferences, panels, journal issues, and professional groups (including H-Disability, as Penny Richards notes). A more complete bio is here.

I was often bowled over by how openly Paul discussed the difficulties he had faced in his career path. As he details in the title essay of Why I Burned My Book, throughout graduate school and his early career people told him frankly that he would never be hired as a person with a severe disability (though one professor did concede that he was "not bitter like many cripples"). The title of the essay comes from a protest Paul staged in 1988 after he was warned his book royalties would render him ineligible for the Social Security Income (SSI) payments that supported his medical and attendant care (at the time, totaling more than $20,000/year - history book royalties do not come close). He burned copies of The Invention of George Washington on a barbecue grill in front of the federal building in downtown Los Angeles, an action that was part of a years-long battle to change SSI policies that effectively discouraged people with disabilities from pursuing professional career paths. Despite his own battles, he never dismissed or belittled others' problems. He often asked me how I was doing, offering supportive words when the dissertation process got me down. We academics rarely discuss our feelings - Paul did, reminding me to seek support and see the long view of my project. I believe his mentoring and teaching were a part of his activism, changing the profession that had not always treated him fairly. Up until his death he was still planning more projects to encourage disability studies and disability history.

Paul sardonically wrote in Why I Burned My Book, "when I published [The Invention of George Washington], one reviewer remarked that it drew on a 'truly astounding amount of research.' Of course it did . Would a postpolio supercrip do anything less? How characteristically disabled of me to undertake so grandiose a project." Still, as he continues, "I don't want to reduce my work to 'overcoming.'" Neither do I. Paul's work is not only remarkable because he "overcame" odds in a society that did not - does not - imagine that people with disabilities can make a contribution. He will have a long legacy because he investigated topics that few historians had considered critically, if at all, and because he did it while maintaining a personal practice of support and generosity. One has only to skim a few of the personal remembrances popping up online (for example, on Not Dead Yet and Media Dis-n-Dat, as well as Paul's facebook page) to see how many scholars, writers, and activists were influenced by his presence, whether in one-time meetings or life-long friendships.

Thank you, Paul. I will miss you tremendously.

20th anniversary of the ADA, other news

I've been a bit slow on the blogging this summer (well, slow meaning fully stopped) - such is the state of dissertating, researching, traveling, and letting time pass, I guess. I have two longer posts in the works, but in the meantime, some bits and pieces:

- There were many celebrations and reflections this week in commemoration of the 20th anniversary of the Americans with Disabilities Act on July 26- the major civil rights act, passed in 1990, that barred discrimination against people with disabilities and mandated equal access to work, employment, and public spaces/services. The best stories, of course, avoided sappy "celebrations" of overcoming and cut to the chase: this Act has made a significant difference in many people's lives, but remains controversial and in many cases, its mandates are unfulfilled (with improvements seen in the 2007 ADA Restoration Act).

NPR's news shows had several stories, many of them authored by, or prominently featuring people with disabilities reflecting on the Act and their lives facing discrimination, like Ben Mattlin telling of how one job interviewer asked, "How would you make photocopies? I mean, you'd be here to help us, not for us to help you," and special education specialist Deborah Peters Goessling talking about the "one inch" that still often prevents her from participating in everyday life (interestingly, she is really touching on "visitability," i.e. being able to visit people's private homes, not covered under the ADA). In a story on the Act's effects on architecture, U. Penn professor Monica Ponce de Leon talked about the more widespread acceptance of the ideal of Universal Design. She described a project for the library at the Rhode Island School of Design, where her firm developed furniture and study space for a diversity of students:

[Robert] SIEGEL: So depending on one's individual needs, one's individual size, or for example if one used a wheelchair, you could find a space that would work for you in that.

Prof. PONCE DE LEON: Exactly. You're actually acknowledging that we all have different degrees of abilities. So at RISD, since you have a student body that is there for four or five years at a time, there was a great possibility that a student may find actually their favorite spot, maybe because their legs are longer than the average or maybe because their height is a little shorter. And it enabled us to embed different ranges of abilities within the design of the space.

- In remembrance of the 20th Anniversary of the ADA, the National Museum of American History's fantastic curator and disability historian, Katherine Ott, presented some objects out of storage on Monday the 26th. I saw the announcement too late (not in DC anyway), but we can all look forward to an exhibition on American disability history in the coming year from the Smithsonian; in the meantime, here are some old links to Katherine's excellent past exhibitions on Polio and the Disability Rights Movement.

- Various spots around the web remember the irreverent cartoonist John Callahan, who spurned the "pathetic" narrative of most disability discourse in pieces like this one:

Image via the New York Times: obituary for Callahan here. A fond and personal remembrance from Portland here (via SDS listserv).

Looking up some of Callahan's old cartoons and illustrations, I also liked this one, which accompanied an article in New Mobility on visitability in housing:

American Able is Awesome

Oh man, I am so thrilled by American Able, a spoof of the ridiculous quasi-porn hipster photos that dominate American Apparel ads, shot by the photographer Holly Norris and featuring "crooked" artist/performer Jes Sachse (side note: it doesn't surprise me that a sly shot at an "American" company comes from a different part of North America, Canada):



The photos fantastically, directly confront the lack of disabled and queer images in pop culture, with a cool and upbeat vibe that almost makes you want to buy those clothes just so you can be as cool as Jes (if only American Apparel realized the potential of going beyond their usual pool of young, thin, women making porno faces/poses at the camera). Read more on Worn Journal and Threadbared (where I first read about it)- two great, smart fashion/art blogs! Image via.

groping

A few stories have crossed my screen/desk/whatever lately that concern blind people and sexuality that seem very weird and misplaced: first, the release of Tactile Minds, a tactile image and Braille text pornography/erotica book by a Canadian graphic designer named Lisa Murphy. This project sounds interesting enough (I really don't know anything about the availability of erotic materials for blind and visually impaired people - though it is notable that Playboy published a Braille edition from 1970-1985), though it was unfortunately mostly covered as a kind of "news of the weird" item, as if no one has ever heard of blind people having an interest in sex or sexy images or whatever [via Jezebel, Village Voice).

This wouldn't be particularly notable, but today I read in the NY Times Magazine of a study that aims to find out what men's "real" preferences in women's body types are by toting around headless mannequins of various dimensions for blind men to grope. Hmm, how many things are wrong with this study?
a) just because blind men are not exposed to the actual images in commercial culture, that somehow means their opinions/preferences are not shaped by prevailing social attitudes about body type and sexuality?
b) the goal of the study was "an attempt to gauge the force of culture, to weigh the learned and the innate, in determining sexual attraction" -- so the blind are not part of culture, and are somehow more "innate" in their sexual desires?
c) if blind people feeling up mannequins is an accurate judgment of men's "innate" preferences, then sighted people judge body shape alone, without any other contextual clues? (without heads, for example - so race, skin color, hair, and facial expression don't factor into sexual attraction?)
d) the study was careful to select only "blind from birth" subjects - but how did it define "heterosexual"? Because that's a totally static category, right?

The study - and the article about it - show the appeal of these tidy, evolutionary explanations of the roots of our desires and preferences:

...sighted and blind men both strongly favored the mannequin with the lower W.H.R. [Waist-to-Hip Ratio], but this slimmer-waisted body received especially high scores from the men with sight, maybe because a life spent amid cultural signals compounds the work of evolution. Still, the gropings of Karremans’s blind offer a glimpse into the ancestral depths of our desires.

Sure-- OR the fact that the two subject groups matched pretty closely could be because the blind men are part of the larger culture? Their slightly less strong preference - could that be because of the compounded cultural messages that de-sexualize blind people and other people with disabilities? Just a guess.

fun ideas for a sunny friday

I always feel a bit touchy around the many "experimental design for the disabled" sites/blog posts/articles you see around.. but these wheelchair designs, selected by mainstream design site Switched, are pretty fun:


A pink-cushioned bent plywood armchair in the style of the Eames Chair, fitted with matching tires and an ottoman, would be hell on the balance but makes a clear (intended) comment about the difference between brand-name design icons and designs for assistive technologies.

Roll.Charge.Light.Protect offers the idea of wheelchair spokes that light up (charged by the wheels, of course) for safer night wheeling. Definitely reminiscent of the many light-up gizmos commuter cyclists choose for helmet, seat, clothes and fenders.

Switched also did a post of design prototypes for gadgets for visually impaired users - interesting that all but one are for computerized readers/sensors of some kind. Designers often fall into the trap of assuming all assistive devices are extremely high-tech, expensive specialty items, and overlook the everyday technologies everyone uses - wonder what potential any of these have to be integrated into mass-market products, as current screen-readers are - on the iPad, for example..

olympic interlude, paralympic prelude

Peter Axelson (image via Disabled Sports USA), an inventor, promoter, and 7-time World Champion in monoskiing, will be one of the U.S.' official delegates to the Olympics closing ceremony on Sunday, Feb 28 (via). Axelson has designed sports equipment for people with disabilities since 1981, when he founded Beneficial Designs and produced his first monoski. Since then Beneficial Designs has produced equipment for alpine and cross-country skiing, surfing, and rowing - releasing each design for open-source use rather than patenting and limiting its availability.
(while looking up images for this post, btw, I came across this great article on the history of adaptive skiing on disaboom)

Then the Paralympics start shortly after the Olympic Games - March 21.
The Paralympics are unlikely to be on NBC - but there is an internet TV channel for them here.
This is a great preview of the Canadian sledge hockey team (they won gold in 2006):



If anyone reading this hasn't seen it, the 2005 documentary Murderball is a fantastic warm-up to the Paralympics.

misc. links

I have just started a new fellowship at the Lemelson Center for the History of Invention & Innovation at the National Museum of American History. It's great to work here, partly because there are a bunch of people working on a Disability History exhibition coming up in the fall (I think) - great because I don't meet a lot of people who work on disability history in my everyday academic life. One of the staff pointed me to this video - from the Disability Rights Commission in the UK - which shows some of the common accessibility issues people with disabilities face through an funny imagined scenario... watch the full version here in 2 parts.

- Remarkable profile of Roger Ebert from Esquire, describing in moving and non-sappy detail his life since he lost his voice.

- Interesting project: DesigNYC (founded by Ed Schlossberg, student of Buckminster Fuller as well as husband of Caroline Kennedy) pairs designers with social causes: examples include an "Eating Healthy in Bed-Stuy" booklet for Bed-Stuy Farm Share; a safer, brighter winter lighting plan for the Broadway commercial district (60th-135th); and several interior/community spaces, including one for a housing project for people w/ mental illness. Article at Design Observer.

- Kansas City Star remembers Paul Levy, activist for accessibility and director of non-profits including The Whole Person Inc., Kansas City; the Coalition for Independence; and Universal Design Housing Network

The Other Disabilities

It's pretty rare to come across much writing/thinking about design for disabilities other than mobility and dexterity impairments: paralysis, arthritis, etc. Here on Design Observer (one of the best design commentary sites around), a reflection on design and OCD by Chappell Ellison, a designer based in New York. Not surprisingly, the essay won a 2009 AIGA Winterhouse Award for Design Writing & Criticism.

Mainly, the essay is a poignant memoir of difficult objects in Ellison's brother's life as he lives with OCD. Laundry baskets with endless holes to clean, restaurant tablecloths rife with germs. But the last few paragraphs address how and whether designers can respond to this particular disease. Universal Design, she (I think?) admits, may not be a useful paradigm, and ultimately it will never be possible to anticipate all of her brother's (let alone the other thousands/millions who have compulsive disorders) object-related concerns. I'm thinking that even Ellison's awareness of such compulsions probably makes her a better designer, aware of the unintended consequences of surface, texture, and form. As she writes,

As a designer, I know that it is impossible to consider every tiny percentage of each special interest group when creating a new product... To create an object for someone who fears tactility and physical interaction is the sort of assignment that turns a designer’s world upside down.

But maybe that is part of the point - design cannot address every variation in human bodies and experiences. Universal Design even has its problems for people with mobility issues - many blind people who use canes have a harder time determining the end of the sidewalk with a curb cut; some people prefer stairs to sloping walkways, etc. Disabilities that affect cognition and behavior are even harder to address and anticipate through design. But as this article suggests, the aim of acknowledging, if not "solving," disability in design might prove to be a fruitful one.

Dwell presents | The Bathroom Reinvented: Universal Design in Public Bathrooms | Part 1 | by Gary Nadeau from gary nadeau on Vimeo.

Nice video clip of Gary Nadeau (of Dwell magazine) visiting public bathrooms with Dan Formosa and Richard Whitehall of Smart Design (designers of, among other things, OXO Good Grips). They are a great odd couple on Universal Design.. Formosa gives the technical definition - its roots in barrier-free legislation - while Whitehall gives the larger meaning/context: Universal Design suggests the possibility of attending to human needs, including emotional, political, social.

Also maybe the best looking collection of people ever collected to expound on the experience of going to the bathroom.