robertogreco + stigma   8

The Touch of Madness - Pacific Standard
"So Jones grew alarmed when, soon after starting at DePaul in the fall of 2007, at age 27, she began having trouble retaining things she had just read. She also struggled to memorize the new characters she was learning in her advanced Chinese class. She had experienced milder versions of these cognitive and memory blips a couple times before, most recently as she’d finished her undergraduate studies earlier that year. These new mental glitches were worse. She would study and draw the new logograms one night, then come up short when she tried to draw them again the next morning.

These failures felt vaguely neurological. As if her synapses had clogged. She initially blamed them on the sleepless, near-manic excitement of finally being where she wanted to be. She had wished for exactly this, serious philosophy and nothing but, for half her life. Now her mind seemed to be failing. Words started to look strange. She began experiencing "inarticulable atmospheric changes," as she put it—not hallucinations, really, but alterations of temporality, spatiality, depth perception, kinesthetics. Shimmerings in reality's fabric. Sidewalks would feel soft and porous. Audio and visual input would fall out of sync, creating a lag between the movement of a speaker's lips and the words' arrival at Jones' ears. Something was off.

"You look at your hand," as she described it to me later, holding hers up and examining it front and back, "and it looks the same as always. But it's not. It's yours—but it's not. Nothing has changed"—she let her hand drop to her knee—"yet it's different. And that's what gets you. There's nothing to notice; but you can't help but notice."

Another time she found herself staring at the stone wall of a building on campus and realizing that the wall's thick stone possessed two contradictory states. She recognized that the wall was immovable and that, if she punched it, she'd break her hand. Yet she also perceived that the stone was merely a constellation of atomic particles so tenuously bound that, if she blew on it, it would come apart. She experienced this viscerally. She felt the emptiness within the stone.

Initially she found these anomalies less threatening than weird. But as they intensified, the gap between what she was perceiving and what she could understand rationally generated an unbearable cognitive dissonance. How could something feel so wrong but she couldn't say what? She had read up the wazoo about perception, phenomenology, subjectivity, consciousness. She of all people should be able to articulate what she was experiencing. Yet she could not. "Language had betrayed me," she says. "There was nothing you could point to and say, 'This looks different about the world.' There were no terms. I had no fucking idea."

Too much space was opening within and around and below her. She worried she was going mad. She had seen what madness looked like from the outside. When Jones was in her teens, one of her close relatives, an adult she'd always seen frequently, and whom we'll call Alex for privacy reasons, had in early middle age fallen into a state of almost relentless schizophrenia. It transformed Alex from a warm, caring, and open person who was fully engaged with the world into somebody who was isolated from it—somebody who seemed remote, behaved in confusing and alarming ways, and periodically required hospitalization. Jones now started to worry this might be happening to her."



"Reading philosophy helped Jones think. It helped order the disorderly. Yet later, in college, she lit up when she discovered the writers who laid the philosophical foundation for late 20-century critical psychiatry and madness studies: Michel Foucault, for instance, who wrote about how Western culture, by medicalizing madness, brands the mad as strangers to human nature. Foucault described both the process and the alienating effect of this exclusion-by-definition, or "othering," as it soon came to be known, and how the mad were cut out and cast away, flung into pits of despair and confusion, leaving ghosts of their presence behind.

To Jones, philosophy, not medicine, best explained the reverberations from the madness that had touched her family: the disappearance of the ex-husband; the alienation of Alex, who at times seemed "there but not there," unreachable. Jones today describes the madness in and around her family as a koan, a puzzle that teaches by its resistance to solution, and which forces upon her the question of how to speak for those who may not be able to speak for themselves.

Jones has since made a larger version of this question—of how we think of and treat the mad, and why in the West we usually shunt them aside—her life's work. Most of this work radiates from a single idea: Culture shapes the experience, expression, and outcome of madness. The idea is not that culture makes one mad. It's that culture profoundly influences every aspect about how madness develops and expresses itself, from its onset to its full-blown state, from how the afflicted experience it to how others respond to it, whether it destroys you or leaves you whole.

This idea is not original to Jones. It rose from the observation, first made at least a century ago and well-documented now, that Western cultures tend to send the afflicted into a downward spiral rarely seen in less modernized cultures. Schizophrenia actually has a poorer prognosis for people in the West than for those in less urbanized, non-Eurocentric societies. When the director of the World Health Organization's mental-health unit, Shekhar Saxena, was asked last year where he'd prefer to be if he were diagnosed with schizophrenia, he said for big cities he'd prefer a city in Ethiopia or Sri Lanka, like Colombo or Addis Ababa, rather than New York or London, because in the former he could expect to be seen as a productive if eccentric citizen rather than a reject and an outcast.

Over the past 25 years or so, the study of culture's effect on schizophrenia has received increasing attention from philosophers, historians, psychiatrists, anthropologists, and epidemiologists, and it is now edging into the mainstream. In the past five years, Nev Jones has made herself one of this view's most forceful proponents and one of the most effective advocates for changing how Western culture and psychiatry respond to people with psychosis. While still a graduate student at DePaul she founded three different groups to help students with psychosis continue their studies. After graduating in 2014, she expanded her reach first into the highest halls of academe, as a scholar at Stanford University, and then into policy, working with state and private agencies in California and elsewhere on programs for people with psychosis, and with federal agencies to produce toolkits for universities, students, and families about dealing with psychosis emerging during college or graduate study. Now in a new position as an assistant professor at the University of South Florida, she continues to examine—and ask the rest of us to see—how culture shapes madness.

In the United States, the culture's initial reaction to a person's first psychotic episode, embedded most officially in a medical system that sees psychosis and schizophrenia as essentially biological, tends to cut the person off instantly from friends, social networks, work, and their sense of identity. This harm can be greatly reduced, however, when a person's first care comes from the kind of comprehensive, early intervention programs, or EIPs, that Jones works on. These programs emphasize truly early intervention, rather than the usual months-long lag between first symptoms and any help; high, sustained levels of social, educational, and vocational support; and building on the person's experience, ambitions, and strengths to keep them as functional and engaged as possible. Compared to treatment as usual, EIPs lead to markedly better outcomes across the board, create more independence, and seem to create far less trauma for patients and their family and social circles."



"Once his eye was caught, Kraepelin started seeing culture's effects everywhere. In his native Germany, for instance, schizophrenic Saxons were more likely to kill themselves than were Bavarians, who were, in turn, more apt to do violence to others. In a 1925 trip to North America, Kraepelin found that Native Americans with schizophrenia, like Indonesians, didn't build in their heads the elaborate delusional worlds that schizophrenic Europeans did, and hallucinated less.

Kraepelin died in 1926, before he could publish a scholarly version of those findings. Late in his life, he embraced some widely held but horrific ideas about scientific racism and eugenics. Yet he had clearly seen that culture exerted a powerful, even fundamental, effect on the intensity, nature, and duration of symptoms in schizophrenia, and in bipolar disorder and depression. He urged psychiatrists to explore just how culture created such changes.

Even today, few in medicine have heeded this call. Anthropologists, on the other hand, have answered it vigorously over the last couple of decades. To a cultural anthropologist, culture includes the things most of us would expect—movies, music, literature, law, tools, technologies, institutions, and traditions. It also includes a society's predominant ideas, values, stories, interpretations, beliefs, symbols, and framings—everything from how we should dress, greet one another, and prepare and eat food, to what it means to be insane. Madness, in other words, is just one more thing about which a culture constructs and applies ideas that guide thought and behavior.

But what connects these layers of culture to something so seemingly internal as a person's state of mind? The biocultural anthropologist Daniel Lende says that it helps here to think of culture as a series of concentric circles surrounding each of us. For simplicity's sake, let's keep it to two circles around a core, with each circle … [more]
2017  daviddobbs  mentalhealth  psychology  health  culture  madness  nevjones  japan  ethiopia  colombo  addisababa  schizophrenia  society  srilanka  shekharsaxena  philosophy  perception  treatment  medicine  psychosis  media  academia  anthropology  daniellende  pauleugenbleuler  emilkraepelin  danielpaulschreber  edwadsapir  relationships  therapy  tinachanter  namitagoswami  irenehurford  richardnoll  ethanwatters  wolfgangjilek  wolfgangpfeiffer  stigma  banishment  hallucinations  really  but  alterations  of  temporality  time  spatiality  depthperception  kinesthetics  memory  memories  reality  phenomenology  subjectivity  consciousness  donaldwinnicott  alienation  kinship  isolation  tanyaluhrmann 
october 2017 by robertogreco
Dr. Cornel West | Reflections on the Life and Legacy of Nelson Mandela | Official Web Site
[previously on militant tenderness and subversive sweetness: https://twitter.com/search?q=rogre%20militant%20tenderness ]

"The natural death of Nelson Mandela is the end of not only a monumental life but also an historic era. Like any spectacular cultural icon, Mandela was many things to all of us. Yet if we are to be true to his complex life and precious legacy, we must pierce through the superficial surfaces and market-driven fanfares. Mandela was a child of his age and a man who transcended and transformed his times. He was a revolutionary South African nationalist who embraced communists even as he embodied his Christian faith and enacted his democratic temperament. He was a congenial statesman whose prudential style and message of reconciliation saved South Africa from an ugly and bloody civil war.

Mandela the man was rooted in a rich African tradition of soulcraft that put a premium on personal piety, cultural manners and social justice. Ancestor appreciation, gentle embrace of others and fair treatment of all was shot through the "soul-making" of the young Nelson Mandela. The fusion of his royal family background, high Victorian and Edwardian education and anti-imperialist formation yielded a person of immense self-respect, moral integrity and political courage. These life-enhancing qualities pit Mandela against the life-denying realities of the dark underside of European imperialism—realities of pervasive terror, chronic trauma and vicious stigma. Yet though deeply wounded and perennially scarred by these realities, Mandela emerged from such nightmarish circumstances with sterling character—a militant tenderness, subversive sweetness and radical gentleness even acknowledged by his foes. To put it bluntly, Mandela the man chose to live a life of wise remembrance, moral reverence and political resistance rather than a life of raw ambition, blind avarice and personal subservience. More pointedly, Mandela refused to be intimidated by the Goliath-like powers of an authoritarian regime.

Mandela the revolutionary movement leader was blessed with a rich South African progressive tradition unmatched anywhere on the globe. Where else can we find so many spiritual giants and political exemplars of courage—from Desmond Tutu, Walter Sisulu, Beyers Naudé, Joe Slovo, Ruth First, Albertina Sisulu, Robert Sobukwe, Steve Biko, Billy Nair, Allen Boesak, Ronnie Kasrils, Rusty Bernstein, Oliver Tambo and so many others. Mandela the man was deeply shaped by the South African freedom movement. He began as a narrow black nationalist, shifted quickly to a United Front strategy, supported the armed struggle and called off the counter-violent stance only when the government renounced violence. Mandela was designated a dangerous enemy of the South African government—a terrorist, communist, traitor and hater—because he led a movement that saw South African laws as themselves criminal. He was imprisoned for over 27 years, permitted one visit and one letter every six months, forbidden to attend the funerals of his mother and oldest son, often relegated to solitary confinement, and sometimes permitted to read only his Bible because his courageous witness as part of the freedom movement constituted the major threat to the South African government. As international support for Mandela and the movement escalated (including many African leaders, the Soviet Union, and millions of people of all colors around the world) and international support for the South African regime was exposed (including America's Reagan and Britain's Thatcher), old-style apartheid began to crumble. The writing on the wall was clear as the Berlin Wall fell.

Mandela the statesman tried to hold together a fragile emerging multiracial democracy and heal a traumatized society against the backdrop of a possible civil war. This incredible balancing act highlighted the spiritual qualities and moral sentiments of Mandela the man—and made him the democratic saint of our time. Yet this gallant effort also downplayed Mandela the revolutionary movement leader who highlighted targeting wealth inequality, corporate power and sheer corruption and cronyism in high places. Mandela is the undisputed father of South African democracy because the freedom movement he led broke the back of old-style apartheid. Yet his neoliberal policies—much to the delight of corporate elites and new black middle-class beneficiaries—failed to address in a serious manner the massive unemployment, inadequate housing, poor medical facilities and decrepit education. The masses of precious poor people—disproportionately black—have been overlooked by the full-fledge integration of the South African economy into the global capitalist world.

I asked the great Nelson Mandela about this grave situation after I gave the Nelson Mandela lecture in Pretoria a few years ago. I lambasted the Santa-Clausification of Nelson Mandela that turned Mandela the man and the revolutionary leader into an unthreatening, huggable old man with a smile with bags full of toys—especially for cheering oligarchs like the Oppenheimers or newly rich elites like Cyril Ramaphosa. Even global neoliberal figures like Bill Clinton and Richard Stengel of Time Magazine become major caretakers of Mandela's legacy as his revolutionary comrades fade into the dustbin of history. As I approached him, he greeted me with a genuine smile of deep love and respect, expressed in the most elevating and encouraging language his appreciation of my righteous indignation in my speech and told me to be steadfast in my witness.

The most valuable lesson we can draw from the life and legacy of Nelson Mandela is to be neither afraid nor intimidated by the neoliberal powers that be. We must create our own deep democratic forms of soulcraft, social movements and statecraft—forms that resist the dominant forces of privatizing, financializing and militarizing that overlook poor and working people. Nelson Mandela met the most pressing challenges of his day with great dignity, decency and integrity. Let us confront the free-market fundamentalism, escalating militarism and insidious xenophobia in our day with his spirit of love, courage and humor.

-- Dr. Cornel West"

[via: "Showed kids 60 Minutes with Cornel West last night. ("I'm unimpressed by smartness.") http://www.cbsnews.com/news/60-minutes-cornel-west-on-race-in-the-u-s/ "
https://twitter.com/ablerism/status/711908596540379136

"+ See also West on Mandela: "a militant tenderness, subversive sweetness and radical gentleness." http://www.cornelwest.com/nelson_mandela.html "
https://twitter.com/ablerism/status/711908847695368192 ]
cornelwest  tenderness  sweetness  care  caring  gentleness  radicalism  radicalgentleness  subversivesweetness  militanttenderness  militancy  nelsonmandela  soulcraft  piety  manners  culture  justice  socialjustice  ancestors  appreciation  fairness  imperialism  trauma  terror  stigma  character  democracy  freedom  society  fear  neoliberalism  legacy  statecraft  privatization  finance  militarization  poverty  dignity  decency  integrity  courage  love  humor  canon  xenophobia  militarism  via:ablerism 
march 2016 by robertogreco
Sara Hendren Believes Disability Is a Cultural Construct
"Do we misunderstand technology that assists the disabled?

When we talk about design technology in the context of disability, we call it assistive technology. But all technology is assistive. Curb cuts were thought to be an extreme user case for wheelchairs. But it turns out that they also make passage through a city easy for a lot of people, like children who are learning to walk, and people who are pushing strollers. Look at the use of elevators. People who are with young children, people who are injured, people who are with older adults who have trouble walking all use them. The Oxo brand of kitchen tools was designed by a man whose wife had arthritis in her hands. He made a fortune by figuring out that a lot of people need some of the same tools that she did. Disabilities occupy the continuum of normal human variation, and technology can do something similar. It’s not that there is technology for normal people, and there is assistive technology for not-normal people.

How can the stigma surrounding technology for the disabled be addressed?

There is no stigma attached to your eyes having less than 20-20 vision. People who wear eyeglasses do not feel any shame in walking out of the door. But studies show there is plenty of stigma attached to hearing aids. I want people to see technologies doing lots of things for lots of people. There are plenty of design speculations, like a hearing aid could not only control the volume of what you are hearing but also how much you are hearing of one thing in particular. How much you are hearing what is in front of you, while tuning out the rest. That can be quite useful in a noisy restaurant. I think there are lots of other opportunities like this to de-stigmatize.

What do you make of the wide publicity given to high-end gear for disabled people, like exoskeletons?

I love these exoskeletons. I am astonished at them as a feat of engineering and think we should celebrate them and support them. I also think that they monopolize the headlines about disability, about prosthetics, and about the promise of technology. We have 100 other kinds of stories about the ways people are living their lives. Lives that are worth living with artifacts and gears but also with systems, jobs, and supports that comes from lots of places. Some of them are low-tech, some of them are systems-scale, and some of them are architectural. A lot of them are hidden from you. The director of the Adaptive Design Association in New York City just won a MacArthur “Genius” award. They have been building adaptive furniture out of triple-walled cardboard for pennies, for decades, and they do it for free. Jaipur Foot in India is producing recycled rubber limbs. There is daily living advice on websites targeted for people living with muscular dystrophy. Ways to button a shirt on your own, ways to hold a fork in a steady manner. There are white canes. White canes are a smart technology. They have resisted many new market entrants. People who are blind find them incredibly elegant and useful tools. But they do not make newsworthy headlines.

Is cheap, scalable technology a necessity?

History shows that the availability of technology doesn’t actually make a more equitable world. In this country, after 25 years of working for rights for people with disabilities, we are still seeing high unemployment rates for the disabled. Look at what happens even in the best inclusive schooling situations. Disabled students who age out of the public school system, their prospects just tank. And this is the richest country in the world, with all kinds of assistive and adaptive technology products available. So you will never convince me that just the sheer production of products that can be scaled cheaply is going to change the way people think about people who have disabilities. You need people to change their minds. So, I am an unabashed culture producer. I think, does democracy come when the next five great products come to the market? History shows that is not the case. History shows that people change their minds based on a lot of things. Look at the way gay rights have been transformed in this country. Sitcoms starting in the ’90s had openly gay characters that went out on national networks, like Ellen. It would have been unheard of more than 25 years ago. So, I think there is a lot of tech-saviorism in the world around disability. People act like engineering is going to rescue these bodies. Then what? Are they going to get better jobs, or suddenly get the respect or the dignity that they are asking for? I strongly feel that engineering does some good things—and cultural forms and stories, objects and artifacts, symbols and metaphors also do things to change the world."
2016  interviews  sarahendren  disability  technology  assistivetechnology  stigma  bias  technosolutionsism  normal  adaptive  adaptivetechnology  disabilities 
march 2016 by robertogreco
Hot Allostatic Load – The New Inquiry
"HI

I am too sick to write this article. The act of writing about my injuries is like performing an interpretative dance after breaking nearly every bone in my body. When I sit down to edit this doc, my head starts aching like a capsule full of some corrosive fluid has dissolved and is leaking its contents. The mental haze builds until it becomes difficult to see the text, to form a thesis, to connect parts. They drop onto the page in fragments. This is the difficulty of writing about brain damage.

The last time I was in the New Inquiry, several years ago, I was being interviewed. I was visibly sick. I was in an abusive “community” that had destroyed my health with regular, sustained emotional abuse and neglect. Sleep-deprived, unable to take care of myself, my body was tearing itself apart. I was suicidal from the abuse, and I had an infected jaw that needed treatment.

Years later, I’m talking to my therapist. I told her, when you have PTSD, everything you make is about PTSD. After a few minutes I slid down and curled up on the couch like the shed husk of a cicada. I go to therapy specifically because of the harassment and ostracism from within my field.

This is about disposability from a trans feminine perspective, through the lens of an artistic career. It’s about being human trash.

This is in defense of the hyper-marginalized among the marginalized, the Omelas kids, the marked for death, those who came looking for safety and found something worse than anything they’d experienced before.

For years, queer/trans/feminist scenes have been processing an influx of trans fems, often impoverished, disabled, and/or from traumatic backgrounds. These scenes have been abusing them, using them as free labor, and sexually exploiting them. The leaders of these scenes exert undue influence over tastemaking, jobs, finance, access to conferences, access to spaces. If someone resists, they are disappeared, in the mundane, boring, horrible way that many trans people are susceptible to, through a trapdoor that can be activated at any time. Housing, community, reputation—gone. No one mourns them, no one asks questions. Everyone agrees that they must have been crazy and problematic and that is why they were gone.

I was one of these people.

They controlled my housing and access to nearly every resource. I was sexually harassed, had my bathroom use monitored, my crumbling health ignored or used as a tool of control, was constantly yelled at, and was pressured to hurt other trans people and punished severely when I refused.

The cycle of trans kids being used up and then smeared is a systemic, institutionalized practice. It happens in the shelters, in the radical organizations, in the artistic scenes—everywhere they might have a chance of gaining a foothold. It’s like an abusive foster household that constantly kicks kids out then uses their tears and anger at being raped and abused to justify why they had to be kicked out—look at these problem kids. Look at these problematic kids.

Trans fems are especially vulnerable to abuse for the following reasons:

— A lot of us encounter concepts for the first time and have no idea what is “normal” or not.

— We have nowhere else to go. Abuse thrives on scarcity.

— No one cares what happens to us.

This foster cycle relies on amnesia. A lot of people who enter spaces for the first time don’t know those spaces’ history. They may not know that leaders regularly exploit and make sexual advances on new members, or that those members who resisted are no longer around. Spaces self-select for people who will play the game, until the empathic people have been drained out and the only ones who remain are those who have perfectly identified with the agendas and survival of the Space—the pyramid scheme of believers who bring capital and victims to those on top."



"
TRASH ART

When it was really bad, I wrote: “Build the shittiest thing possible. Build out of trash because all i have is trash. Trash materials, trash bodies, trash brain syndrome. Build in the gaps between storms of chronic pain. Build inside the storms. Move a single inch and call it a victory. Mold my sexuality toward immobility. Lie here leaking water from my eyes like a statue covered in melting frost. Zero affect. Build like moss grows. Build like crystals harden. Give up. Make your art the merest displacement of molecules at your slightest quiver. Don’t build in spite of the body and fail on their terms, build with the body. Immaculate is boring and impossible. Health based aesthetic.”

Twine, trashzines made of wadded up torn paper because we don’t have the energy to do binding, street recordings done from our bed where we lie immobilized.

Laziness is not laziness, it is many things: avoiding encountering one’s own body, avoiding triggers, avoiding thinking about the future because it’s proven to be unbearable. Slashing the Gordian Knot isn’t a sign of strength; it’s a sign of exhaustion."



"SOCIAL DYNAMICS

COMMUNITY IS DISPOSABILITY
There are no activist communities, only the desire for communities, or the convenient fiction of communities. A community is a material web that binds people together, for better and for worse, in interdependence. If its members move away every couple years because the next place seems cooler, it is not a community. If it is easier to kick someone out than to go through a difficult series of conversations with them, it is not a community. Among the societies that had real communities, exile was the most extreme sanction possible, tantamount to killing them. On many levels, losing the community and all the relationships it involved was the same as dying. Let’s not kid ourselves: we don’t have communities.

—The Broken Teapot, Anonymous"

People crave community so badly that it constitutes a kind of linguistic virus. Everything in this world apparently has a community attached to it, no matter how fragmented or varied the reality is. This feels like both wishful thinking in an extremely lonely world (trans fems often have a community-shaped wound a mile wide) and also the necessary lens to convert everything to profit. Queerness is a marketplace. Alt is a marketplace. Buy my feminist butt plugs.

The dream of an imaginary community that allows total identification with one’s role within it to an extent that rules out interiority or doubt, the fixity and clearness of an external image or cliche as opposed to ephemera of lived experience, a life as it looks from the outside.

—Stephen Murphy

These idealized communities require disposability to maintain the illusion—violence and ostracism against the black/brown/trans/trash bodies that serve as safety valves for the inevitable anxiety and disillusionment of those who wish “total identification”.

Feminism/queerness takes a vague disposability and makes it a specific one. The vague ambient hate that I felt my whole life became intensely focused—the difference between being soaked in noxious, irritating gasoline and having someone throw a match at you. Normal hate means someone and their friends being shitty toward you; radical hate places a moral dimension onto hate, requiring your exclusion from every possible space—a true social death."



"There is immense pressure on trans people to engage in this form of complaint if they want access to spaces—but we, with our higher rates of homelessness, joblessness, lifelessness, lovelessness, are the most fragile. We are the glass fems of an already delicate genderscape.

Purification is meaningless because anyone can perform these rituals—an effigy burnt in digital. And their inflexibility provides a place where abuse can thrive—a set of rules which abusers can hold over their victims.

Deleuze wrote, “The problem is no longer getting people to express themselves, but providing little gaps of solitude and silence in which they might eventually find something to say. Repressive forces don’t stop people from expressing themselves, but rather, force them to express themselves. What a relief to have nothing to say, the right to say nothing, because only then is there a chance of framing the rare, or ever rarer, the thing that might be worth saying.”

>>

ENDING

People talk about feminism and queerness the way you’d apologize for an abusive relationship.

This isn’t for the people who are benefiting from these spaces and have no reason to change. This is for the people who were exiled, the people essays aren’t supposed to be written for. This is to say, you didn’t deserve that. That even tens or hundreds or thousands of people can be wrong, and they often are, no matter how much our socially constructed brains take that as a message to lie down and die. That nothing is too bad, too ridiculous, too bizarre to be real when it comes to making marginalized people disappear.

Ideology is a sick fetish.

RESISTING DISPOSABILITY

— Let marginalized people be flawed. Let them fuck up like the Real Humans who get to fuck up all the time.

— Fight criminal-justice thinking. Disposability runs on the innocence/guilt binary, another category that applies dynamically to certain bodies and not others. The mob trials used to run trans people out of communities are inherently abusive, favor predators, and must be rejected as a process unequivocally. There is no kind of justice that resembles hundreds of people ganging up on one person, or tangible lifelong damage being inflicted on someone for failing the rituals of purification that have no connection to real life.

— Pay attention when people disappear. Like drowning, it’s frequently silent. They might be blackmailed, threatened, and/or in shock.

— Even if the victim doesn’t want to fight (which is deeply understandable—often moving on is the only response), private support is huge. This is the time to make sure the wound doesn’t become infected, that the PTSD they acquire is as minimized as … [more]
porpentine  community  via:sevensixfive  feminism  abuse  disposability  identity  interdependence  ptsd  trauma  recovery  punishment  safety  socialmedia  call-outculture  society  culture  violence  mobbing  rape  emotionalabuse  witchhunts  silviafederici  damage  health  communication  stigma  judithherman  terror  despair  twine  laziness  trashart  trashzines  alliyates  social  socialdynamics  stephenmurphy  queerness  jackiewang  complaint  complaints  power  powerlessness  pain  purity  fragility  gillesdeleuze  deleuze  solitude  silence  ideology  canon  reintegration  integration  rejection  inclusivity  yvetteflunder  leadership  inclusion  marginalization  innocence  guilt  binaries  falsebinaries  predators 
december 2015 by robertogreco
A conversation with President David Skorton and Pulitzer Prize winner Junot Díaz MFA '95 - CornellCast
"Each year, the Olin Lecture brings to campus an internationally prominent speaker to address a topic relevant to higher education and the current world situation. Junot Díaz is a Pulitzer Prize-winning author and creative writing professor at Massachusetts Institute of Technology (MIT)."

[Great chat with Junot Díaz (is there any other kind?) and I especially love the part towards the end in response to a prompt from the audience about social action.

“There is no more important mandate to anyone living in a society than civic engagement. Civic engagement is just what's owed. There is no person, poor or rich, who does not take more out of this country than what they put back in. No one. There is no one so afflicted that doesn't owe this nation a debt. Civic engagement is how we begin to pay the interest on that debt. And, part of civic engagement is looking for places that we think that we can improve and trying to improve it. It is just something that has been lost for a long time, something that I think isn't valued enough. I think that what you are doing is incredibly important under the most fundamental level of what it means to be alive in a civic society. To give back, to attempt to engage yourself in that way is absolutely essential.

The thing is that we live in a society that has spent the last thirty or forty years promulgating, convincing people that the only thing that matters is you and how much money you have made. A perverse neoliberal individualism that has collapsed a lot of what we would call our civic communities. People aren't just bowling alone, gang. People are also not engaged in civic society the way they used to. They've got us all mad at each other, whether we're Republican or Democrats because that is a way to convince people that this is civic engagement. Partisan politics is not civic engagement. We think it's civic engagement, but it's not. And I think the nature of civic engagement is that in a country like ours, in a moment like ours, it is going to be very hard to convince people to go against the pied piper music of individualism and neoliberal profit-making and to think more seriously about what our community requires and what is owed of all of us. And I think that the nature of this work, is that you are going to find that it is going to be difficult to engage large movements of people. And that despite this, what you do is utterly invaluable.

My sense of this is that you've got to constantly model, you've got to constantly reach out, and you've got to everything you cant that when you're home, or wherever you settle, to go to every damn school and get every teacher who is an ally and let you make a presentation. And try to get allied teachers to come and visit your project so that at least the young people are exposed and given some modeling. And it is the same thing. How many people are at home looking for things to do? And, again, I don't know what community you are in or what kind of space, but if you can sort of figure out a place where there is a lot of traffic that you could present and model your work, you can begin to slowly pull people in. Will it be a lot? No. Will it be as much as you need? Perhaps. Will it be transformational and save individual lives through that engagement and through that reaffirmation of the most important values of our civic society? Absolutely. Being an artist in some ways is no different than being someone who wants to make this country better. there is very little money in it, especially if done correctly.

You know, there is little acclaim and respect. And in fact, there is very few signs that what you're doing is working. And yet, without your presence, what remains is not worth calling a society. Nothing is more a faith-based initiative than the kind of work you're doing. But I would argue, trying to get into the schools, trying to get into the places where a lot of adults flow through who don't have that kind of training or don't have that kind of literacy, and tying to kind of increase the exposure, that is what tends to work best in this battle. And I leave you with this: whether you're someone who is trying to do the work this young sister is doing or you're a teacher trying to convince their students that reading is good, in this battle, it is hand to hand. If you can transform one life, you've given more than most of us can dream. And, that life may do the work the future needs to make the future that we all dreamed possible. And therefore you must stick with it.”

See 1:02:29 for that.]
junotdíaz  art  activism  writing  race  2015  via:javierarbona  howwewrite  whywewrite  experience  socialjustice  us  education  highered  highereducation  inclusion  inclusivity  diversity  immigrants  immigration  elitism  politics  struggle  mfas  hardship  gratitude  civics  citizenship  engagement  migration  bilingualism  language  accents  rutgers  cornell  stigma  latinos  patriarchy  capitalism  publicadministration  socialaction  society  movements  storytelling  neoliberalism  individualism  money  wealth  inequality  transformation  modeling  lcproject  openstudioproject  inlcusivity 
june 2015 by robertogreco
Metafoundry 15: Scribbled Leatherjackets
[Update 23 Jan 2015: a new version of this is now at The Atlantic: http://www.theatlantic.com/technology/archive/2015/01/why-i-am-not-a-maker/384767/ ]

"HOMO FABBER: Every once in a while, I am asked what I ‘make’. When I attended the Brighton Maker Faire in September, a box for the answer was under my name on my ID badge. It was part of the XOXO Festival application for 2013; when I saw the question, I closed the browser tab, and only applied later (and eventually attended) because of the enthusiastic encouragement of friends. I’m always uncomfortable identifying myself as a maker. I'm uncomfortable with any culture that encourages you take on an entire identity, rather than to express a facet of your own identity (‘maker’, rather than ‘someone who makes things’). But I have much deeper concerns.

Walk through a museum. Look around a city. Almost all the artifacts that we value as a society were made by or at the the order of men. But behind every one is an invisible infrastructure of labour—primarily caregiving, in its various aspects—that is mostly performed by women. As a teenager, I read Ayn Rand on how any work that needed to be done day after day was meaningless, and that only creating new things was a worthwhile endeavour. My response to this was to stop making my bed every day, to the distress of my mother. (While I admit the possibility of a misinterpretation, as I haven’t read Rand’s writing since I was so young my mother oversaw my housekeeping, I have no plans to revisit it anytime soon.) The cultural primacy of making, especially in tech culture—that it is intrinsically superior to not-making, to repair, analysis, and especially caregiving—is informed by the gendered history of who made things, and in particular, who made things that were shared with the world, not merely for hearth and home.

Making is not a rebel movement, scrappy individuals going up against the system. While the shift might be from the corporate to the individual (supported, mind, by a different set of companies selling things), and from what Ursula Franklin describes as prescriptive technologies to ones that are more holistic, it mostly reinscribes familiar values, in slightly different form: that artifacts are important, and people are not.

In light of this history, it’s unsurprising that coding has been folded into ‘making’. Consider the instant gratification of seeing ‘hello, world’ on the screen; it’s nearly the easiest possible way to ‘make’ things, and certainly one where failure has a very low cost. Code is 'making' because we've figured out how to package it up into discrete units and sell it, and because it is widely perceived to be done by men. But you can also think about coding as eliciting a specific, desired set of behaviours from computing devices. It’s the Searle’s 'Chinese room' take on the deeper, richer, messier, less reproducible, immeasurably more difficult version of this that we do with people—change their cognition, abilities, and behaviours. We call the latter 'education', and it’s mostly done by underpaid, undervalued women.

When new products are made, we hear about exciting technological innovation, which are widely seen as worth paying (more) for. In contrast, policy and public discourse around caregiving—besides education, healthcare comes immediately to mind—are rarely about paying more to do better, and are instead mostly about figuring out ways to lower the cost. Consider the economics term ‘Baumol's cost disease’: it suggests that it is somehow pathological that the time and energy taken by a string quartet to prepare for a performance--and therefore the cost--has not fallen in the same way as goods, as if somehow people and what they do should get less valuable with time (to be fair, given the trajectory of wages in the US over the last few years in real terms, that seems to be exactly what is happening).

It's not, of course, that there's anything wrong with making (although it’s not all that clear that the world needs more stuff). It's that the alternative to making is usually not doing nothing—it's nearly always doing things for and with other people, from the barista to the Facebook community moderator to the social worker to the surgeon. Describing oneself as a maker—regardless of what one actually or mostly does—is a way of accruing to oneself the gendered, capitalist benefits of being a person who makes products.

I am not a maker. In a framing and value system that is about creating artifacts, specifically ones you can sell, I am a less valuable human. As an educator, the work I do is, at least superficially, the same year after year. That's because all of the actual change is at the interface between me, my students, and the learning experiences I design for them. People have happily informed me that I am a maker because I use phrases like 'design learning experiences', which is mistaking what I do for what I’m actually trying to elicit and support. The appropriate metaphor for education, as Ursula Franklin has pointed out, is a garden, not the production line.

My graduate work in materials engineering was all about analysing and characterizing biological tissues, mostly looking at disease states and interventions and how they altered the mechanical properties of bone, including addressing a public health question for my doctoral research. My current education research is mostly about understanding the experiences of undergraduate engineering students so we can do a better job of helping them learn. I think of my brilliant and skilled colleagues in the social sciences, like Nancy Baym at Microsoft Research, who does interview after interview followed by months of qualitative analysis to understand groups of people better. None of these activities are about ‘making’.

I educate. I analyse. I characterize. I critique. Almost everything I do these days is about communicating with others. To characterize what I do as 'making' is either to mistake the methods—the editorials, the workshops, the courses, even the materials science zine I made—for the purpose. Or, worse, to describe what I do as 'making' other people, diminishing their own agency and role in sensemaking, as if their learning is something I impose on them.

In a recent newsletter, Dan Hon wrote, "But even when there's this shift to Makers (and with all due deference to Getting Excited and Making Things), even when "making things" includes intangibles now like shipped-code, there's still this stigma that feels like it attaches to those-who-don't-make. Well, bullshit. I make stuff." I understand this response, but I'm not going to call myself a maker. Instead, I call bullshit on the stigma, and the culture and values behind it that reward making above everything else. Instead of calling myself a maker, I'm proud to stand with the caregivers, the educators, those that analyse and characterize and critique, everyone who fixes things and all the other people who do valuable work with and for others, that doesn't result in something you can put in a box and sell."

[My response on Twitter:

Storified version: https://storify.com/rogre/on-the-invisible-infrastructure-of-often-intangibl

and as a backup to that (but that doesn't fit the container of what Pinboard will show you)…

“Great way to start my day: @debcha on invisible infrastructure of (often intangible) labor, *not* making, & teaching.”
https://twitter.com/rogre/status/536601349756956672

“[pause to let you read and to give you a chance to sign up for @debcha’s Metafoundry newsletter http://tinyletter.com/metafoundry ]”
https://twitter.com/rogre/status/536601733791633408

““behind every…[maker] is an invisible infrastructure of labour—primarily caregiving, in…various aspects—…mostly performed by women” —@debcha”
https://twitter.com/rogre/status/536602125107605505

“See also Maciej Cegłowski on Thoreau. https://static.pinboard.in/xoxo_talk_thoreau.htm https://www.youtube.com/watch?v=eky5uKILXtM”
https://twitter.com/rogre/status/536602602431995904

““Thoreau had all these people, mostly women, who silently enabled the life he thought he was heroically living for himself.” —M. Cegłowski”
https://twitter.com/rogre/status/536602794786963458

“And this reminder from @anotherny [Frank Chimero] that we should acknowledge and provide that support: “Make donuts too.”” http://frankchimero.com/blog/the-inferno-of-independence/
https://twitter.com/rogre/status/536603172244967424

“small collection of readings (best bottom up) on emotional labor, almost always underpaid, mostly performed by women https://pinboard.in/u:robertogreco/t:emotionallabor”
https://twitter.com/rogre/status/536603895087128576

““The appropriate metaphor for education, as Ursula Franklin has pointed out, is a garden, not the production line.” —@debcha”
https://twitter.com/rogre/status/536604452065513472

““to describe what I do as 'making' other people, diminish[es] their own agency & role in sensemaking” —@debcha”
https://twitter.com/rogre/status/536604828705648640

“That @debcha line gets at why Taylor Mali’s every-popular “What Teachers Make” has never sat well with me. https://www.youtube.com/watch?v=RxsOVK4syxU”
https://twitter.com/rogre/status/536605134185177088

““I call bullshit on the stigma, and the culture and values behind it that reward making above everything else.” —@debcha”
https://twitter.com/rogre/status/536605502805798912

“This all brings me back to Margaret Edson’s 2008 Commencement Address at Smith College. http://www.smith.edu/events/commencement_speech2008.php + https://vimeo.com/1085942”
https://twitter.com/rogre/status/536606045200588803

“Edson’s talk is about classroom teaching. I am forever grateful to @CaseyG for pointing me there (two years ago on Tuesday).”
https://twitter.com/rogre/status/536606488144248833

““Bringing nothing, producing nothing, expecting nothing, withholding … [more]
debchachra  2014  making  makers  makermovement  teaching  howweteach  emotionallabor  labor  danhon  scubadiving  support  ursulafranklin  coding  behavior  gender  cv  margaretedson  caseygollan  care  caretaking  smithcollege  sensemaking  agency  learning  howwelearn  notmaking  unproduct  frankchimero  maciejceglowski  metafoundry  independence  interdependence  canon  teachers  stigma  gratitude  thorough  infrastructure  individualism  invisibility  critique  criticism  fixing  mending  analysis  service  intangibles  caregiving  homemaking  maciejcegłowski 
november 2014 by robertogreco
Obesity Campaigns: The Fine Line Between Educating and Shaming - Lindsay Abrams - The Atlantic
"But Puhl points out that despite the large amounts of money that go into these campaigns, little research has been done by the organizations behind them on their practical effectiveness. She urges the people spreading these messages to pay more attention to the effects they may be having -- especially when they're in danger of causing harm. As the authors wrote, "Considerable evidence demonstrates that individuals who feel stigmatized or shamed about their excess weight engage in higher calorie intake, unhealthy eating behaviors, binge-eating patterns, as well as avoidance of exercise." And previous studies done by these researchers revealed that exposing people to stigmatizing images worsens their attitudes toward obese people.

The trick is figuring out how to be anti-obesity without being anti-obese people -- and boiling these issues down to a slogan makes this difficult to do. \"
healthcare  health  stigma  behavior  psychology  2012  education  shaming  obesity 
september 2012 by robertogreco
The Art of Distraction - NYTimes.com
"Biological determinism is one of psychology’s ugliest evasions, removing the poetic human from any issue."

"As we as a society become desperate financially, and more regulated and conformist, our ideals of competence become more misleading and cruel, making people feel like losers. There might be more to our distractions than we realized we knew. We might need to be irresponsible. But to follow a distraction requires independence and disobedience; there will be anxiety in not completing something, in looking away, or in not looking where others prefer you to. This may be why most art is either collaborative — the cinema, pop, theater, opera — or is made by individual artists supporting one another in various forms of loose arrangement, where people might find the solidarity and backing they need."
anxiety  conformism  confomity  medication  medicine  ritalin  psychology  frustration  boredom  humiliation  diversity  human  labels  labeling  education  schools  attention  winners  losers  winnersandlosers  stigma  society  2012  hanifkureishi  dyslexia  adhd  learning  distraction 
february 2012 by robertogreco

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