The Best Arms? Prosthetic limb improvements - or not

In the image above, veterans from a post-World War I workshop at Walter Reade Army Medical Center demonstrate new attachments for their prosthetic limbs - such as a welding tool. Though these tools did not catch on as much in the US as in Germany (according to research by Heather Perry published in this book), the idea of a worker restored to function through such a tool was of interest to American medical and military authorities too. Image via the amazing National Museum of Medicine flickr set.

In another image, below, from the Science Service photograph collection at the National Museum of American History, a veteran of World War II demonstrates his new prosthetic arm to a group of ladies visiting a Washington exhibition in 1948. The exhibition showcased the results of a multi-million dollar (a lot back then!) project to improve the design of artificial limbs, including (in the foreground) using new plastics and hydraulic joints. (note: portions of the Science Service collection are online, but not those related to disability/medicine).


I thought of these images after reading this story on the Guardian on British TV Presenter Cerrie Burnell. Burnell, who was born without the lower part of her right arm, chooses not to wear a prosthetic limb. Since childhood, she resisted wearing "this heavy, uncomfortable, ugly, pointless . . . thing," finding a prosthesis more cumbersome than useful.

Burnell is not alone. Despite the improvements made after WWII, in a 1950 study rehabilitation doctors reported that as few as 12% of single-arm amputees wore prosthetic limbs - and of those, only half wore them for daily work and hobbies! The rest simply found it easier to operate using one hand. Limbs have improved (though not as much as you might think!) but I have heard anecdotally that the number is still only about 50%. Sometimes there really is no design solution for everyone - no product/technology at all might be the best.

The point that Burnell raises - that people would rather see an obvious prosthetic limb than the stump of her arm - brings up interesting issues about the kinds of disability prejudice or discomfort that exist our modern visual/technological society. Is it that people are more comfortable with plastic and metal - even though they clearly indicate a lost limb - than the actual flesh of an impaired body? Or that they want to see that the person is at least trying to repair/replace their disability - to make themselves more "normal"? Does the strangeness of a prosthetic limb somehow trump the taboos around physical difference or disability?

Given its frequent appearance in both sci-fi and cultural studies, there is clearly some fascination in our modern society with this technology that can extend or replace human function - or even, as in the case of recent carbon-fiber sprinting legs (note: legs, not arms), surpass it. After wars, the press scurries to investigate the state of prosthetic limbs, and the government funds massive new projects to improve them. As the images above show, the ideas of what constitutes an "improved" arm change over time - sometimes focusing on utility for particular jobs, sometimes pushing to include whiz-bang new technologies and materials. Despite all of this attention, however, sometimes the fascination about prosthetic limbs has little to do with the material reality that an individual person with an amputation or missing limb has to use this object, and they may just choose to go without.

3 quick links to 3 smart things

1. Steven Kuusisto on the "post-physical" fantasy of many technophiles -

We are, it seems, living in the age of the promissory “improved” body—yet that body is still stuck between the territories of production (politics), reproduction (material expense) and imagination (compulsory normativity).

Kuusisto writes that this ideal of a mechanized world that alleviates or "eliminates" disability is not a neutral product of technological innovation - it is the result of particular processes of imagination, wrapped in political concerns (i.e. who plans, who pays, who decides who and what gets to be post-physical?). In other words,

[the post-physical ideal] evokes Bill Clinton’s remark: “If you see a turtle on a fence post you can bet he didn’t get there by accident.”

2. Wheelchair Dancer on emergency plans - personal and administrative - for people with disabilities.

Katrina seems to have been a turning point in disaster planning for people with disabilities... Since then, I have seen numerous conference announcements, notices for research reports and lists of paper abstracts talking about disaster planning for people with disabilities. (An unfortunate side effect of all this good work is the now popular phrase "vulnerable populations.")

(note: this is an issue that also came to mind for me at the time of the inauguration, when officials suggested people with disabilities stay at home)

3. An interview with Pattie Moore, an industrial design consultant whose 1979 experiment of disguising herself as an elderly woman brought light to accessible design issues (via Core77).

In the 70s, we were told we design for a Caucasian, 40 years old, living on Long Island, with 2.3 kids. We didn’t even really design for women. And if you brought up the idea of designing for people with arthritis, for example, they would say, “We don’t design for those people!”

Also related: giant NY Times magazine article about the aging "market."

Bricolage

I was just (re)reading Bernard Herman's material culture essay "The Bricoleur Revisited," from Ritchie Garrison and Ann Smart Martin's American Material Culture: The Shape of the Field (1997) - the bricoleur, Herman writes, is a "putterer with a message" - basically us, scholars and lovers of stuff, picking through the detritus of history for little messages and meanings.

I thought of that figure of the bricoleur in this world of not just objects, but bodies. Disability studies helps us think of not all bodies as the same, and I kind of waffle about whether I consider that to be a material culture statement or not. (bodies are not objects, but they are part of the material world. I am not crazy about a lot of scholarship on "the body" however, because it tends to be singular).

Something I read today made me think of it again.. Steven Kuusisto (fantastic poet, blogger, joker, and activist, who is blind) writes about becoming an honorary member of the "Wretches and Jabbers," a group of non-speaking writers (apparently there is a new documentary out about the group), and visiting them for a meeting. He describes sitting among them, everyone typing out words on talking computers, jumping and lurching as they needed to or wanted to:

Suddenly I was in "a happening"--a cognitive, inter-active jam session with four men and one woman, each with an electronic keyboard. Stories emerged about loneliness and about being misunderstood. (People with Autism can tell you things about childhood that will curl your hair.) But there were also many joys for this was a kind of autistic rock and roll session. (from Planet of the Blind)

The bricoleur looks into a box of things - stones, shells, an earring, a shard of a ceramic pot - and constructs stories. I liked thinking of how that applies to modern life, our funny tools and sounds and the stories and connections they help us make. I don't want to say bodies are objects but they are part of the picture.

Worlds with and without stairs II

Above is a video that has been circulating in my facebook feed and various blogs, showing an experiment to see if altering the experience of walking up stairs would change people's likelihood of taking the stairs rather than the escalator. It's pretty cute and simple, and it's nice to see people having a fun time in the mundane setting of a subway station. This is not a strictly "accessible" form of design, though it does play off of choice between ways of moving through a place, which does have to do with physical access. And it makes me wonder - how much do designers think about stairs? Are they inviting, discouraging, or just plain functional? In a world when we often have the choice of elevator, escalator, stairs or ramps, could designers make these experiences more distinct?


When I first started this blog, I posted about the idea of a "world without stairs" - wondering whether an accessible world could actually mean the disappearance of such a standard architectural feature as the stairs.

I've learned a few things since then... one is, of course, that stairs are just one kind of physical barrier, for one kind of access issue. In fact, many people with disabilities prefer stairs to ramps - for example, if they use a prosthetic leg or a cane, that straight platform can be easier to use. The first ever Architectural Standard in the U.S. included not only measurements for ramps, but design guidelines for stair heights and angles that would not interfere with those who needed to drag their feet up the front of stairs:


(image: figure showing unacceptable and acceptable stair designs, from the 1961 American National Standards Institute's Specifications for Making Buildings and Facilities Accessible to, and Usable by, the Physically Handicapped, which became the guidelines for state and federal accessibility laws in the 1960s and 70s).

In my earlier post on stairs, I noted some architectural examples (such as the Guggenheim) that used alternatives to stepped surfaces as a design feature. These were not spaces explicitly designed for wheelchair use (in fact some of them might belong in the Facebook "Wheelchair Ramps and Access from Hell" photo collection), but might suggest ways of making access an explicit part of design, rather than an afterthought.

I was also thinking about ways that stairs themselves can be accessible or inaccessible. For those who walk up and down stairs, they can have a pronounced effect on how we experience a place. Think of the difference between ascending a grand staircase, feeling that you are rising up to an important and elegant place - perhaps like the Metropolitan Opera's lush red stairways - and scrambling up the narrow spiral stairs of a cathedral bell tower or a lighthouse.

In some cases architects consciously use stairways to dramatize walking through the space - in other cases, I wonder what thought went into a stair design.


At the Frank Furness-designed Philadelphia Academy of Fine Arts, the central stair to the galleries has no handrail. The effect is subtle, but nonetheless jarring - your hand might reach out for something to hold, but instead you feel a bit out of sorts, pitched downward with no assurance. In the context of this historic building, we get a sense of a different time and a different set of expectations about bodily composure walking down the stairs. (Image shows a woman from the back, descending a set of stone stairs without a handrail in sight). In 2011, the museum has been designed to provide an alternate route to the stairs, but in its original design, Furness certainly made a distinct statement for those coming and going into this temple for art.

On a recent trip I discovered another set of museum steps that literally stopped me in my tracks. The newish Center for Contemporary Art in Cincinnati is the only American building by Zaha Hadid, the Pritzker Prize-winning architect best known for prototype or drawn work, so I was excited to visit while I was in town for a wedding. The sleek lines and geometry of the museum building are appealing, but the stairs immediately stood out to me - and not in a particularly good way. Criss-crossing the void in the main entry lobby, these stairs have a much shorter rise, and longer step, than we expect in standard staircases. They are so awkward to walk up that I almost wondered if this was an installation of the museum collection itself. As a long-ish strider I was constantly tripping up these stairs, and almost fell on the way up. I asked the guards if they had gotten used to them over time, and they chuckled, no, and confirmed that I was far from the only visitor to ask about the stair heights.

It's interesting to me to wonder how Hadid came to these stairs. Did she deliberately design something that would halt your walk, maybe prepare you to pay attention as you see the artworks? Is this an explicit message that we should not relax too much or feel too comfortable in a museum? Or are the stairs, like many functional elements of contemporary architecture, just the product of some low-level drafts-person who designs based on general instructions of the architect? In any case, I wondered if Hadid had ever walked up these stairs. They are certainly dramatic, but the ultimate result for me was to feel frustrated and a bit indignant - how dare this architect tell me how to walk! And of course, I thought of how these steps would feel for someone with a physical impairment - for whom that break in routine might be more than an annoyance.

Leaving the CCA, I decided to take the elevator down. In a world with stairs, we might choose to avoid them too.

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