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Contra* podcast — Mapping Access
"a podcast about disability, design justice, and the lifeworld. Subscribe on iTunes, Stitcher, and Google Play, or play from our website."

[See also:
https://www.mapping-access.com/podcast/2018/12/29/episode-1-contra-design-with-sara-hendren

"In this first episode of the podcast, we talk to design researcher Sara Hendren, who teaches at Olin College of Engineering, about disability, critical design, and poetic creation.

Show notes and transcription

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Themes:

Critical Design

Theory of critical design revised by disability

Writing as/part of critical design

Disability politics in relation to design

Translational work and science communication; critical design as a “friendly Trojan horse”

Things as an index of ideas

STEAM, knowledge, and power

Links:

Sara Hendren (https://sarahendren.com)

Abler blog (https://ablersite.org/)

Adaptation and Ability Lab (http://aplusa.org/)

Wendy Jacob and Temple Grandin, Squeeze Chair (https://patient-innovation.com/post/1047?language=en)

Sketch Model project at Olin College (http://www.olin.edu/collaborate/sketch-model/)

Ivan Illich, Tools for Conviviality (https://www.goodreads.com/book/show/253076.Tools_for_Conviviality)

Karen Barad, Meeting the Universe Halfway (https://www.dukeupress.edu/Meeting-the-Universe-Halfway/)

Aimi Hamraie, Building Access: Universal Design and the Politics of Disability (https://www.upress.umn.edu/book-division/books/building-access)

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Introduction Description:

The podcast introductory segment is composed to evoke friction. It begins with sounds of a wheelchair rhythmically banging down metal steps, the putter of an elevator arriving at a person’s level, and an elevator voice saying “Floor two, Floor three.” Voices begin to define Contra*. Layered voices say “Contra is friction…Contra is…Contra is nuanced…Contra is transgressive…Contra is good trouble…Contra is collaborative…Contra is a podcast!…Contra is a space for thinking about design critically…Contra is subversive…Contra is texture…”

An electric guitar plays a single note to blend out the sound.

The rhythmic beat of an electronic drum begins and fades into the podcast introduction.

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Episode Introduction:

Welcome to Contra*: the podcast about disability, design justice, and the lifeworld. This show is about the politics of accessible and critical design—broadly conceived—and how accessibility can be more than just functional or assistive. It can be conceptual, artful, and world-changing.

I’m your host, Aimi Hamraie .  I am a professor at Vanderbilt University, a designer and design researcher, and the director of the Critical Design Lab, a multi-institution collaborative focused on disability, technology, and critical theory.  Members of the lab collaborate on a number of projects focused on hacking ableism, speaking back to inaccessible public infrastructures, and redesigning the methods of participatory design—all using a disability culture framework. This podcast provides a window into the kinds of discussions we have within the lab, as well as the conversations we are hoping to put into motion. So in coming episodes, you’ll also hear from myself and the other designers and researchers in the lab, and we encourage you to get in touch with us via our website, www.mapping-access.com or on Twitter at @criticaldesignl

In this first episode of the podcast, we talk to design researcher Sara Hendren, who teaches at Olin College of Engineering, about disability, critical design, and poetic creation.

Sara and I talk about her work in the fields of critical design and assistive technology, including how she came to this work, how she is thinking about strategy and practice, and also her current work on bridging the humanities with STEM education."]
accessibility  disability  aimihamraie  ableism  podcasts  disabilitystudies  criticaldesign  olincollege  assistivetechnology  technology  poeticcreation  creativity  sarahendren  ivanillich  toolsforconviviality  wendyjacob  templegrandin  stem  knowledge  power  karenbarad  adaptation  materialculture  socialimagination  art  design  thinking  inclusivity  capitalism  howwewrite  howwethink  making  communication  academia  scholarship  ethics  politics  difference  jargon  language 
january 2019 by robertogreco
avoiding the high-brow freak show | sara hendren
"Oliver Sacks is probably the only author many people have read about disability at length. Sacks wrote many books with such a keen eye for description and also a literate, humanitarian lens—he was able to link together ideas in natural history, the sciences, and the humanities with sincerity and warmth, and always with people at the center. But which people? The subjects of the book, or the reader who is “reading” herself, her own experiences, as she takes in these stories? In any good book, many characters are involved: author, characters, reader. But there’s some particular tricky territory in disability narratives.

It’s challenging to write about this subject for a mainstream audience, perhaps because there are so many well-rehearsed pitfall tropes in characterizing bodily and developmental differences. Descriptions of physicality, speech, or idiosyncratic movement can slide so easily into spectacle. And revealing the ways that disabled people* cope, make sense, and create joy and humor in their lives can collapse into inspiration, easily won.

I’m thinking about Sacks as I write my own words, interpreting my own many encounters with disabled people in a way that both engages readers for whom the subject is ostensibly new, and that also does justice to the integrity and singularity of those people involved. I’m trying to write about disability and its reach into the wider human experience, that is, without making individual people into metaphors. Now: those ideas might be laudable—interdependent life, a critique of individualism, all bodies and lived experiences as endless variation, necessarily incomplete in their own ways—but they are ideas nonetheless. How to make this tradeoff? How to help the uninitiated reader by saying See, see here, your life is caught up in these stakes too, but without flattening the individual subjects on whom those ideas are based?

I keep circling around this review in the LRB of Sacks’s An Anthropologist on Mars and The Island of the Colorblind—analysis of which includes his book Awakenings and could also be applied to The Man Who Mistook His Wife For a Hat. Jenny Diski admires Sacks’s projects and his craft, but she also has this to say:
“A story needs a conclusion whereas a case-history may not have one. In fact, stories have all kinds of needs that a case-history will not supply, and Sacks is insistent that he is writing the stories of his patients, not their cases. This is not intended to fudge fact and fiction, but to enlarge patients into people.

On the other hand, he is describing people with more or less devastating illnesses— that is his raison d’être—and his explicit purpose is to generalize from these, usually unhappy, accidents of life and nature, to a greater understanding of the human condition. In Awakenings he states: ‘If we seek a “curt epitome” of the human condition—of long-standing sickness, suffering and sadness; of a sudden, complete, almost preternatural “awakening”; and, alas! of entanglements which may follow this “cure”—there is no better one than the story of these patients.’

He is offering life, death and the whole damn thing in the metaphor of his patients. And it is true that these patients and others show us what it is like, as he says, ‘to be human and stay human in the face of adversity’. But metaphors are not in fact descriptions of people in their totality. They are intentional, and consciously or unconsciously edited tropes, not complete, contained narratives.

I don’t know any kind of narrative, fictional or otherwise, that can present people in their totality, so perhaps it doesn’t matter, but Sacks is offering us people because of their sickness and the manner of their handling it. This is hardly an overturning of the medicalizing tendency of doctors. And when we read these stories, as we do, to tell us more about ourselves, we read them as exaggerations of what we are, as metaphors for what we are capable of. Their subjects may not be patients as freaks, but they are patients as emblems. They are, as it were, for our use and our wonderment. Around their illness, the thoughts of Leibniz, Kant, Kierkegaard, Nietzsche and Proust are hoisted like scaffolding, as if to stiffen their reality into meaning.”

Stiffening their reality into meaning! It’s a cutting and exact criticism, especially when it seems that Sacks was utterly sincere in his search for human and humane connection—with these patients as clinical subjects and in his engagement with readers.

Diski hints at the pushback Sacks got from scholars in disability studies, too; scholar Tom Shakespeare took a swipe at him as “the man who mistook his patients for a career,” calling his body of work a “high-brow freak show.” And when I re-read Sacks’s New Yorker essay, excerpted from the Anthropologist book, on autistic self-advocate Temple Grandin, I see a little bit what Shakespeare meant. There is something of the microscope being employed in that encounter, and somehow we walk away fascinated but maybe less than conjoined to Grandin’s experience. It’s rich with connection and with pathos (in a good way!), but there’s distance in it too. So—it’s not perfect.

And yet: people read and loved that book, saw themselves in it. And Grandin went on to write several books in her own voice, to have a wide audience for her work and wisdom. The visibility of autistic self-advocacy has been greatly amplified since Sacks’s writing about it. (And yet—also—Diski says that Sacks has a way of making meaning out of disability that’s essentially a wonder at the human body via its ailments, as in “My God, we are extraordinary, look how interestingly wrong we can go.”) Is there a way to affirm the extraordinary without ending at: there but for the grace of god…? Without ending with gratitude that we don’t share someone’s plight? I want readers to come away uncertain: about where there’s joy and where there’s pain, about how they might make different choices, ordinary and extraordinary choices, if handed a different set of capacities in themselves or in their loved ones.

But can a writer really calibrate that level of nuance? Lately I’m thinking that I can only write what I can write, knowing that it will be incomplete and partial in its rendering.

I want a world full of disabled voices, people telling their stories in their own ways, with their own voices intact. But I also want a world of people to read about the collective stakes inherent in disability—and not just the rights issues that are being ignored, urgent as they are. I want people to see that spending time thinking about disability is an invitation to see the world differently, and to locate one’s own experiences differently. Not to erase the particularity of any one person’s very material experiences, but to help remedy the invisibility of disabled experience outside the inner circle of people who talk to one another, who know that these issues are important. And some audiences will need some interpretation, some cognitive-linguistic bridges to understand the import of disability—its wonder, its overlooked importance, and yes, even its lessons, if we may call them such. Lessons without moralizing, lessons without abstractions.

*Yes, “disabled people,” not “differently abled” or even always “people with disabilities.” There’s no one right answer or moniker, but soon I’ll write a short piece on why “disabled people” is a preferred term among many activists."

[See also this response from Alan Jacobs: http://blog.ayjay.org/writing-by-the-always-wrong/ ]
sarahendren  oliversacks  disability  2017  diversity  morality  moralizing  difference  humanism  individualism  interdependence  variation  jennydiski  conclusions  case-histories  sickness  sadness  suffering  life  death  storytelling  narrative  tomshakespeare  templegrandin  pathos  correction  autism  self-advocacy  meaning  meaningmaking  uncertainty  joy  pain  grace  writing  howewrite  voice  invisibility  visibility  erasure  experience  alanjacobs  disabilities 
july 2017 by robertogreco
Animal Madness: Zoochosis, stereotypic behavior, and problems with zoos.
"Many zoos cite the longer life expectancy of zoo animals to show that living conditions are humane. The animals are free from the danger of predators, so how bad can it be? To this, Braitman writes, “A tally of years lived and calorically balanced meals eaten doesn’t account for quality of life or the pleasure that can come from making one’s own decisions.” But longer life expectancies are not found in all captive animals. A study in the journal Science found that zoo elephants’ life spans were less than half that found in protected wild populations in Africa and Asia.

When I spoke with Braitman, she went to great lengths to explain that zoos’ failures to provide satisfactory habitats are not the fault of the zookeepers, adding that most truly want what is best for their animals. During my visit to the National Zoo, I too was touched by my encounters with zookeepers. I met one gingerly handling a tenrec (a hedgehog-like creature native to Madagascar) who knew the answer to every question I peppered him with about the animals in the exhibit.

But if not zoos, then what? Both Braitman and DeMello agree that our desire to interact with animals is a good impulse. DeMello suggests non-intrusive activities like whale watching. Braitman offers a more drastic prescription: End zoos as we know them and replace them with hands-on petting zoos, teaching farms, urban dairies, and wildlife rehabilitation centers, where people can interact with the kinds of animals “who often thrive in our presence,” such as “horses, donkeys, llamas, cows, pigs, goats, rabbits.” Braitman chides us for our delusion “that it is our right to see exotic wildlife like gorillas, dolphins, and elephants in every major American city … especially since it often costs the animals their sanity.”"
animals  welfare  animalwelfare  mentalhealth  health  zoos  2014  wildlife  laurelbraitman  templegrandin  catherinejohnson  megodemello 
june 2014 by robertogreco
Temple Grandin: The world needs all kinds of minds | Video on TED.com
"Temple Grandin, diagnosed with autism as a child, talks about how her mind works -- sharing her ability to "think in pictures," which helps her solve problems that neurotypical brains might miss. She makes the case that the world needs people on the autism spectrum: visual thinkers, pattern thinkers, verbal thinkers, and all kinds of smart geeky kids."
autism  ted  templegrandin  learning  understanding  language  nonverbal  visual  patterns  verbal  neuroscience  tcsnmy 
february 2010 by robertogreco

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