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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
not a contrarian | sara hendren
"From this series of questions to Zadie Smith [https://losarciniegas.blogspot.com/2018/01/zadie-smith-i-have-very-messy-and.html ] comes Teju Cole’s question:

Cole: You must be under some pressure to be agreeable, to agree with the right opinions. But I notice that you think through things, rather than just agreeing to them. How do you defend that space of independent thought?

Smith: I don’t think of myself as a contrarian. I’m useless at confrontation. But I also can’t stand dogma, lazy ideas, catchphrases, group-think, illogic, pathos disguised as logos, shoutiness, ad hominem attacks, bombast, liberal piety, conservative pomposity, ideologues, essentialists, technocrats, preachers, fanatics, cheerleaders or bullies. Like everybody, I am often guilty of some version of all of the above, but I do think the job of writing is to at least try and minimise that sort of thing as much as you can."
zadiesmith  tejucole  sarahendren  2018  confrontation  opinions  pressure  contrarians  contrarianism  thinking  dogma  laziness  catchphrases  groupthink  logic  pathos  logos  adhominenattacks  pomposity  ideology  essntialism  technocrats  preachers  preaching  fanaticism  cheerleading  bullying  writing  howwewrote  howwwethink 
november 2018 by robertogreco
contagion and quality of life | sara hendren
When does a life worth living cease to become so? When one can no longer eat and must use a feeding tube? A ventilator? When one loses mobility, or memory? What about pain—can one live with a little, but not a lot? How much is a lot, exactly? And then there is the monster in its own category that is depression. I know many people living with each of these conditions, and the thing I know is this: the view from outside is invariably impoverished. The human brain just lacks the imagination to fathom a life lived well that is so physically or neurologically different from one’s own. Living without capacities one has come to take for granted is only seen as loss of capacity, and therefore loss in total. A life no longer a life. But ask disabled people, and they will tell you: their lives are worth having.
SaraHendren 
june 2018 by jbertsche
openings and closures | sara hendren
"One of the themes of my book is about how all states of the body and its gear make for what I’m calling openings and closures in a life—openings and closures that are co-created with hardware and software. Look and listen closely to what people with disabilities are saying about their own lives: It will never suffice to describe someone as “bound” to a wheelchair or “suffering from” autism, and it will never be really truthful to say that a technology “gave someone her life back.” Any real story, closely attended, will show itself to be far, far more interesting. Every body is a patchwork, which means that all states of being come with possibilities and impossibilities, gradations of change, capacities that diminish while others open up, all in a close orchestration that plays out with and without design or technology. Some conditions, as in the case of true disease, we may well wish away. But others make us who we are, and the line is blurrier than the common narratives would have us believe. It’s a state of dynamism for everyone, full stop. Once you see that to be true among people with disabilities, you may feel invited yourself to recognize that same dimensionality, to recognize you share it.

Sharing openings and closures doesn’t mean “we’re all disabled” in a glib way. It means that there’s more that is true about being disabled than the available narratives make known. More that is true and more to be known that is not only experience, but also cultural knowledge. It’s what the scholar Susan Wendell means when she says in this passage from The Rejected Body: Feminist Philosophical Reflections on Disability:
Not only do physically disabled people have experiences which are not available to the able-bodied, they are in a better position to transcend cultural mythologies about the body, because they cannot do things the able-bodied feel they must do in order to be happy, “normal,” and sane…If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place.
"
susanwendell  sarahendren  disabilities  disability  technology  bodies  2018  time  change  dynamism  openings  closures  life  assistivetechnology  ability  possibility  impossibility  body 
april 2018 by robertogreco
stop literalizing the design process | sara hendren
"This is your semi-regular reminder that collaborative, ethical design is not synonymous with customer service, taking orders from “users,” retail-style. It’s synthesizing and recombining ideas from insights gained by deeply considered habits of attention. The implications of this claim are twofold, and people are forever forgetting either one or the other, ad infinitum.

The first implication is that—yeah, you can’t ask people a bunch of questions in survey mode, and then turn the magical crank of the design process to automatically make something good, something the world is asking for. But the second implication is that a designer’s job is not to obediently make the precise widget described by so-called end users, to check a moral box and be sure that they did the right thing. Insights and synthesis are subtler than that. A designer has to both be grounded in multiple forms of deep attention, not in simple yes-no answers, and she has to get liftoff from the mundane first ideas at hand—to take considered risks, to switch scales, to propose ideas that are bigger than the sum of parts.

And perhaps it’s surprising, but it’s actually that second implication that’s harder for people to grasp. Yes—yes of course—the world is full of solutioneering. We have to keep talking about all the ways tech and design go wrong when there’s an assumption that any given clever intervention will make the world better. But it’s also far too easy to wield a blunt moral cudgel to ethics-check people in a simplistic way. It seems to me that in 2018, folks who know something about design tend to find a voice for their skepticism about this clueless over-confidence, but those same people have too little patience for the non-linear and enigmatic way that design gets its work done. “Did-you-ask-the-user-what-she-wants” now is code for: did you get a direct order for your decisions? It’s just never that simple, never that rote, never that guaranteed. A plea for discernment and subtlety, friends."
sarahendren  2018  design  collaboration  ethics  ethicaldesign  customerservice  synthesis  recombination  surveys  attention  solutioneering  solutionism  technosolutionism  morals  morality  skepticism  discernment  subtlety 
april 2018 by robertogreco
not in any particular order, and not exactly a gospel, but | sara hendren
But above all staying awake is, as scores of wise writers will tell you: cultivating your astonishment. It’s easy in childhood and then bludgeoned out of your system through many rituals of schooling and cultural conditioning. But astonishment is the fuel for an expansive urgency in your actions, and cultivating it is the habit that builds the possibility for joy.
SaraHendren 
march 2018 by jbertsche
say instead | sara hendren
"Reader, when you have spent some time in the presence of someone using a wheelchair, or flapping their hands, or wielding a cane, or bearing up under a cloud of depression, say not to yourself oh now I shall be grateful for my life. Push past this quickest reflexive impulse, which is to compare your relative capacities as though on a scale of diminishment, to measure your lot. What looks like your gleaning wisdom is a falsity, for each of these conditions is its own and distinctive habitation. Flattening your encounter into a lesson does no good for you, nor for anyone else.

No, say instead: I will live here too. I live here in this same universe where the body is a patchwork: a body built with others, the seams showing, an open assemblage. A body at once precarious, thriving, alternately frustrated or balletic, extended by instruments visible or invisible. But a patchwork nonetheless. A patchwork is the body’s truest state."
sarahendren  bodies  human  humans  2018  disability  ableism  depression  body 
february 2018 by robertogreco
Investigating the Bridge Between Engineering and Art with Sara Hendren
And Engineers are really good at this. Once you understand the workings of the world, that they are the product of human decisions, then you understand that not everything that is inherited in your built environment is the way it must be. The possibility for otherwise is everywhere.
...
In a line, it’s about the unexpected places where disability is at the heart of design. Over the years, I’ve talked to people about various exemplary sites where disability and design are meeting, and I really want to explore these in depth in a book. So I’m writing about all the scales of design where disability come in to play: starting with wearables and prosthetics, going into furniture, to rooms, to buildings and then to urban planning, and ending up at systems level.
...
And I want people to see that the experience of disability is a fundamentally human one, and what that implies, that is the interdependence between people, that is also fundamentally human and indeed universal. I’m talking about what philosophers have called the “autonomy myth” for one thing. I think Western Liberalism includes this idea of a self that is sealed off from others and that independence is the default status for a human being, but I think history shows that that’s not true.

Disability is a way to really point people to that deep insight. In other words, that people who live with disability, not to romanticize conditions of dependence, nonetheless there is a deep wisdom there, among people whose lives are more explicitly tied up with the assistance of others and assistance of technologies and interdependence on things, artifacts, systems, and again on other people.
SaraHendren 
february 2018 by jbertsche
a rat is killed, a man broken, a horse splashes | sara hendren
"Take small steps. In an experimental approach to social change, presume that we cannot know the consequences of our interventions in advance. Given this postulate of ignorance, prefer wherever possible to take a small step, stand back, observe, and then plan the next small move. As the biologist J. B. S. Haldane metaphorically described the advantages of smallness: “You can drop a mouse down a thousand-yard mineshaft; and on arriving at the bottom, it gets a slight shock and walks away. A rat is killed, a man broken, a horse splashes.”

Favor reversibility. Prefer interventions that can easily be undone if they turn out to be mistakes. Irreversible interventions have irreversible consequences. Interventions into ecosystems require particular care in this respect, given our ignorance about how they interact. Aldo Leopold captured the spirit of caution required: “The first rule of intelligent tinkering is to keep all the parts.”

Plan on surprises. Choose plans that allow the largest accommodation to the unforeseen. In agricultural schemes this may mean choosing and preparing land so that it can grow any of several crops. In planning housing, it would mean “designing in” flexibility for accommodating changes in family structures or living styles. In a factory it may mean selecting a location, layout, or piece of machinery that allows for new processes, materials, or product lines down the road.

Plan on human inventiveness. Always plan under the assumption that those who become involved in the project later will have or will develop the experience and insight to improve on the design."
2018  sarahendren  seeinglikeastate  jamescscott  urbanplanning  socialservices  government  everyday  maps  mapping  legibility  highmodernism  socialengineering  reversibility  small  slow  humanism  humans  ecosystems  markets  community  cooperation  scale  scalability  taylorism 
january 2018 by robertogreco
available in response | sara hendren
"I want to dig into the idea of availability in teaching—in the affective sense, not just the conceptual one. Availability is about being deeply attuned to what’s happening for a group of three, or ten, or twenty-one students, and understanding the differences between those groups so you can calibrate accordingly. It’s broadcasting enough confidence and calm up front that people will trust your intentions, but also the clarity of mind to alter your plans mid-stream and try something else—in response. Plenty of people found it difficult to trust whether Irwin could really pull off something substantive with all of his waiting around, and it takes a tremendous amount of trust for both teachers and students to act together in this way. But availability isn’t disorganization. It’s a quality of attention to the specificities of encounters, this minute, and then this one, and the next.

Steve Seidel, who gave me my first full-time job at Project Zero and first put me onto Irwin, modeled this kind of availability over and over for me. He’d taught in high school classrooms for seventeen years before going into research, and I was lucky to witness, in my early twenties, the ways he welcomed graduate students into his office and his courses, treating their concerns and questions with absolute dignity, like he had all the time in the world for them (and he didn’t!). I saw that there’s a sincere performance aspect to availability: the artificial slowing of time, the listening carefully, and the under-determined nature of exchanges with students, even if you can predict what might be on their minds. I’ve spent the last many years trying to emulate him as much as I can.

The availability thing really came alive, though, when I spent a couple of days at a time down at the School for Poetic Computation in New York. I was there twice as a visiting artist, and both times I gave a talk and then students signed up for half-hour or hour conversations. We walked, or we sat in a garden, or we looked at their work, and we talked. And most of time—these were strangers to me—I tried to get right to the essence with questions and more questions. What’s on your mind? And tell me more. And so on. You have to shore up all your reserves, to marshal all your wits about you when you do this. You have to smile and squelch the urge to fill silences, take a deep breath and pretend like you’ve known each other for some time, in the hopes that this person can get a little space to work longer on what’s in their heads and on paper, or in code, or whatever it is.

I got a little glimpse of this, too, when just a couple of weeks ago I spent time with students in the ID2 program of the Angewandte (university for applied arts) in Vienna. Students were at a halfway point in their course, which had nothing to do with disability. I came and introduced some ideas, and then they prototyped rapidly: a series of ideas-in-things, held in the provisional. There are so many reasons this kind of workshop should ultimately fail. The teacher drops in from outside; there’s no extrinsic motive for them to come along for your invitation. When it succeeds, it’s because of availability in response. With a thousand cues you have to signal: I am here now, holding space for you to do some good work."
availability  listening  sarahendren  robertirwin  teaching  learning  education  art  cv  canon  2017  audiencesofone  seveseidel  projectzero  sfpc  schoolforpoeticcomputation  id2  angewandte  conversation  unschooling  deschooling 
december 2017 by robertogreco
available in response
I saw that there’s a sincere performance aspect to availability: the artificial slowing of time, the listening carefully, and the under-determined nature of exchanges with students, even if you can predict what might be on their minds. I’ve spent the last many years trying to emulate him as much as I can.

And most of time—these were strangers to me—I tried to get right to the essence with questions and more questions. What’s on your mind? And tell me more. And so on. You have to shore up all your reserves, to marshal all your wits about you when you do this. You have to smile and squelch the urge to fill silences, take a deep breath and pretend like you’ve known each other for some time, in the hopes that this person can get a little space to work longer on what’s in their heads and on paper, or in code, or whatever it is.
SaraHendren  listening  availability 
november 2017 by jbertsche
to grow and cook a message
Writing is a way to end up thinking something you couldn’t have started out thinking. Writing is in fact a transaction with words whereby you free yourself from what you presently think, feel, and perceive. You make available to yourself something better than what you’d be stuck with if you’d actually succeeded in making your meaning clear from the start.”
SaraHendren  writing 
october 2017 by jbertsche
unguarded
Couldn’t help but love coming across novelist Jim Harrison’s saying that he’d “rather give full vent to all human loves and disappointments, and take a chance on being corny, than die a smartass.” A thousand times yes. “Giving full vent” is surely part of writing to learn, and full of getting it wrong. But you’re there, in it—you’re after the formal representation of the real thing, awake and alert to life and how to describe its weirdness in the most precise language you can muster, not hiding behind cleverness.

I mean, I hate sentimentality too, because there’s nothing “full” about it. It’s an abstraction, a well-rehearsed version of life, when life is always impossibly strange. But to give full vent, still, is to be out there, unguarded. I want to be un-clever, unguarded, and free.
SaraHendren  writing  honesty 
october 2017 by jbertsche
Uses This / Sara Hendren
"In Jack Miles's parlance, I'm much more a hunter than a farmer, so the most important work I do is a slow-thinking and non-linear process. For hardware, like a lot of design folks, I live and die by notebooks and pens to capture immediately when I'm making connections. I'm literally never without this combination because I find my inner two-way tape is always running, especially in the grip of a big unwieldy project: formulating and synthesizing and outputting ideas at unexpected times and places."



"Lastly: my husband and I figured out that having all five family members use the exact same Lunch Bots containers makes our mornings much easier. And I realized about a year ago that all three of my kids can now wear the same ankle socks that I do. Small streamlining victories! A few years back I would have listed my encyclopedic knowledge of little-kid hardware: cloth diapers, baby carriers, and strollers-for-cities. If you're in that stage, well -- high five, comrade. It gets easier."



"Bonus question that I'm gonna add here: What systems also support your getting things done?

Glad you asked! The Writers' Room of Boston is giving me a fanatically quiet, affordable place to co-work this year. But more profound than that: my kids attend a Title I public school, where there are structures in place that anticipate and plan for full-time working parents. We have high-quality after-school programs and summer camps run through the city, extra specialists in the building, small classroom numbers, and full-day inclusion services for our child who has significant support needs. Our public library system elected to eliminate late fees for children's books(!), so that keeps us swimming in great reading material at home. There's no quantifiable metric I could place on these systems for making our life work."
sarahendren  thesetup  usesthis  2017  systems  tools  publicschools 
october 2017 by robertogreco
don't look | sara hendren
"While reading to my three children at night, my youngest, age 7, will often be lolling in bed while I narrate. Or maybe he’ll be fiddling with Legos or other blocks as he listens. But lately, when the action of the story gets intense, or a scene grows emotional, or somehow the suspense elongates, my son’s whole body will wind down till he’s perfectly still. He will train his eyes on my face, watching the words come out as he listens. He’s the youngest, so it’s likely that his brain is having to assimilate at least one new vocabulary word per paragraph by inference, all while he’s being carried along by what happens, and then what happens next.

This perfect quietude usually only lasts a dozen seconds or so at a time, after which he’ll go back to kneading his pillow or looking at the stickers on his bed frame while the story continues. But each time this happens, I’m aware of it. I can see him in my peripheral vision. And for many reasons, at least right now, I don’t meet his eyes. I keep reading.

Sometimes I’m so tempted! I have an instinct to share his attention. To break the spell of the narrative to say: See here, here we are, watching the same characters move their way through time. That would be the completion of one kind of circuit: you and I, caught up in this same tale together.

But I hold back. I don’t want to intrude on his experience of just the story itself, being delivered to him aurally and mostly without my mediation as to what things mean, what context we’re missing. He is having his own encounter, and that’s another kind of circuitry altogether. It’s one to which I’m sometimes best as a witness. Because this is also how a story does its work: sending a charge to its boy and back again, blooming both partial and replete in his singular comprehension.

Part of parenting is surely this—acting as nothing more and nothing less than a hedge around experiences we may watch but perhaps refrain from sharing. All I can think now is: Keep reading. Don’t look."
sarahendren  2017  restraint  parenting  observation  assessment  readalouds  intrusion  cv  canon  comprehension  constructivism  stories  literature  witness  sharing  narrative  quietude  stillness  concentration  attention 
september 2017 by robertogreco
the past is another country (again) | sara hendren
From Bill McKibben’s introduction to the 2010 reissue of E. F. Schumacher’s Small Is Beautiful: Economics As If People Mattered:
“[One of Jimmy Carter’s] first acts in office was to get rid of twenty limousines, and then don a cardigan for a fireside chat where he discussed the ‘permanent energy shortage’ the nation faced. Toward the end of his presidency, he gave one of his most famous speeches, diagnosing a ‘crisis of confidence’ in the country and attacking materialism as the cause: ‘In a nation that was proud of hard work, strong families, close-knit communities, and our faith in God, too many of us now tend to worship self-indulgence and consumption,’ he warned. ‘Human identity is no longer defined by what one does but by what one owns.’ And, at least at first, people agreed—his sagging poll numbers jumped. Indeed, there was a mainstream audience for this kind of thinking: That year the sociologist Amitai Etzioni reported to Carter that 30 percent of Americans were ‘pro-growth,’ 31 percent were ‘anti-growth,’ and 39 percent were ‘highly uncertain.’ Read those numbers again—a plurality of Americans were ‘anti-growth.’”

McKibben is marveling at “anti,” but I’m frankly just as nonplussed and a little wistful about such a high register of admittance to “highly uncertain.”
billmckibben  sarahendren  2017  2010  jimmycarter  materialism  capitalism  energy  uncertainty  consumption  us  amitaietzioni  sustainability  growth  environment  anti-growth  energycrisis  politics  history  excess 
august 2017 by robertogreco
Sara Hendren en Instagram: “Technologies for writing a book: triple-wall cardboard desk topper for standing-and-writing; AI-powered, human-tweaked transcription…”
"Technologies for writing a book: triple-wall cardboard desk topper for standing-and-writing; AI-powered, human-tweaked transcription services for interviews; fountain pens and notebooks; cloud-based backup software. The future is mixed and weirder, always weirder."
sarahendren  technology  writing  tools  howwework  2017  assistivetechnology 
july 2017 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
radically careful, or carefully radical | sara hendren
"I’m working on a book in earnest now, and for that I’m getting caught up on my woefully patchy knowledge of design history. The last bunch of years have been devoted to design-build processes and to literacy in disability studies and socially-engaged art practices, and far less so to the history and theory of design proper. It’s time! I was musing on Twitter about how so much of my own design is redesign, and my friend and mentor Anne Galloway pointed me to an obvious place to start thinking about redesign: Bruno Latour’s essay “A Few Steps Toward a Philosophy of Design.” I’m thinking still about this apt description of design’s essential modesty:

“President Mao was right after all: the revolution has to always be revolutionized. What he did not anticipate is that the new ‘revolutionary’ energy would be taken from the set of attitudes that are hard to come by in revolutionary movements: modesty, care, precautions, skills, crafts, meanings, attention to details, careful conservations, redesign, artificiality, and ever shifting transitory fashions. We have to be radically careful, or carefully radical… What an odd time we are living through.”

Radically careful or carefully radical! But it will never do to simply hide in this modesty (saying that our work is merely ‘design,’ a ‘drawing together,’ as Latour says, instead of, say, ‘building’). Why? Because that apparent modesty can also collapse into romantic ambivalence, anemic timidity, a shelter from critique.

Much more to think about there, including his exhortation at the end to practitioners—a call to think about the very tools themselves and how they might be configured to represent the fullness of context and contradiction in this practice that is always re-making. Re-design as all design.

Among many other things, I’ll be reading through CMU’s Transition Design bibliography as well. Expect some notes here from those rich sources."
sarahendren  2017  care  caring  radicals  radicalism  revolution  brunolatourdesign  annegalloway  modesty  design  timidity  criticism  carefulness 
july 2017 by robertogreco

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