Mad Pride on National (US) News

FYI:

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MindFreedom Update — Tuesday, 25 August 2009

Unite for A Mad Pride Revolution in Mental Health

Tonight on ABC-TV USA News Show Primetime:

MAD PRIDE DEBATED!

As Predicted: Last Half of ABC-TV Show Plays Up Violence

ABC-TV just posted the text for the second half of their story tonight on MAD PRIDE, and it looks like the show will end as many experienced activists predicted:

Over-emphasizing a gory violent incident by a person with a psychiatric diagnosis.

Tonight, Tuesday night, 25 August 2009, the Mad Pride piece is slated to air on ABC-TV’s national Primetime show “Outsiders” at 10 pm ET and PT in the USA, but check your local listings for the exact time.

Said David Oaks, Director of MindFreedom, who is interviewed in the show, “After 33 years of activism, I am not surprised about media exploitation of violence. But let us remember the many people killed by the violence of forced psychiatric drugging. ABC-TV ignores this institutional violence. Most of us in MindFreedom are psychiatric survivors. We remember. Nothing will stop us from speaking out, not even predictable bias by huge corporations like Disney.” Disney is the owner of ABC-TV.

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* ACTION * ACTION * ACTION *

Join the debate!

Read both Part One and Part Two of the text of ABC’s Mad Pride story on their web site, and add your comment now to the debate in BOTH parts:

Part 1:

“‘Mad Pride’ Activists Say They Are Unique, Not Sick”:

http://abcnews.go.com/Health/story?id=8382903

Part 2:

“For One Family Decision to Reject Treatment Ends in Tragic Death”:

http://abcnews.go.com/Primetime/story?id=8399298

Series on Transhumanisim

The journal republic has a fairly large number of articles (most short though) transhumanism. Might be worth checking out!

Mad Developments

There is a lot of madness when it comes to psychiatry. One recent example of madness–perhaps insanity– is this faux peer review journal. At least there seems to be a growing counter-current in medicine that wants to sever the umbilical cord between doctors and drug companies as well as a vibrant grass roots move to embrace a different politics in and of madness.

Prevention is not the answer

Alchemical Musings has written a sharp (as a tooth and nail) account of some pretty troubling directions in biological psychiatry, which is moving toward the territory of prevention.

As he notes:

Instinctively, preventative health care seems like a good thing. Western medicine is often criticized for primarily responding to acute crises, instead of proactively promoting health and well-being. However, the reductionist flattening of minds into brains leads to categorical errors which pervert the Hippocratic principle to “do no harm”. Applying the medical paradigm of treating risks (instead of disorders) to mental conditions stretches the dangerously elastic diagnostic net beyond the breaking point.

We Want To Read

Read and sign the petition here

The Reading Rights Coalition, which represents people who cannot read print, protested the threatened removal of the text-to-speech function from e-books for the Amazon Kindle 2 outside the Authors Guild headquarters in New York City at 31 East 32nd Street on April 7, 2009, from noon to 2:00 p.m. The coalition includes the organizations that represent the blind, people with dyslexia, people with learning or processing issues, seniors losing vision, people with spinal cord injuries, people recovering from strokes, and many others for whom the addition of text-to-speech on the Kindle 2 promised for the first time easy, mainstream access to over 245,000 books.

Gender “Freedom”

In the land of the “free” where that often seems to mean you are free to buy most anything you want, well, one can now buy baby gender as well.

Concert for the deaf

Concert accessible to the deaf in Toronto. Interesting stuff that I had never thought about. Make sure to check out the comments as well. As someone points out, this is not exactly new news, but it will be to many, which helps account for its importance.

Disability in/and hacking

I have two running projects, one on hackers and the other on patient activism with a focus on psychiatric survivors and chronic lyme disease activists. The later project may seem to have more overt ties with questions of the body and disability, but I would say computer hacking, which is the subject of a course I am teaching this fall is fundamentally tied in with issues of ability and disability as well. Three of the most salient issues are 1) Blindness 2) Autisms/Aspergers 3) Repetitive Stress Injuries

For example, the history of phone phreaking (a variant of hacking where experimentation is focused not on computers but phone systems; it predates hacking as well) is fundamentally intertwined with blindness. Some of the most famous phreakers from the past were blind (and found great comfort and freedom, really a social outlet, in exploring the phone lines and hanging out with other phreakers in party lines). And even today, some of the most (in) famous phreakers are blind, the subject of this recent article on a particularly bold and brash blind phreaker.

Some hackers also are known to have aspergers or autism (some identify with being autistic, others do not) and this sort of trait can lend itself toward computer work. I have heard people informally joke about how the Internet is built by the labor of autistic geeks. And while it is an exaggeration to say that all geeks and hackers have autism, there does seem to be a higher than normal prevalence of autistic like behaviors among this crowd.

“Disability doesn’t mean Inability”

* For those in the NYC-area, this looks like a fabulous event

“Disability doesn’t mean Inability”
By: Emmanuel Yeboah, Athlete and Activist
 
 When:  Monday, October 27, 2008
 Where: NYU Pless Hall, First Floor Lounge
 82 Washington Square East
 New York, NY 10003
 Time:    6:00-8:30PM
 
 
Emmanuel Ofosu Yeboah was born in Ghana, with a deformed right leg and 
meager expectations. He was able to become self-sufficient in a 
society where the disabled (almost 10 percent of the population) are 
abandoned, shunned and hopeless.  To show his countrymen that 
disability doesn’t mean inability, he pedaled a bike donated by 
Challenged Athletes Foundation 610 km (379 miles) around Ghana using 
only his left leg. He continues to work vigorously to ensure that 
opportunities are available to all physically challenged Ghanaians.
 
Panel Discussion, Q & A, Wine & Cheese to follow
 
 
For questions please contact us at africa.house@nyu.edu

SHAMELESS: The ART of Disability

For those in the NYC area:

The Council for the Study of Disability invites you to a

Screening and Discussion of the award winning documentary

SHAMELESS:

The ART of Disability. This humorous, passionate film tracks artists with diverse disabilities as they create and present self-representations that transform stereotypes and reveal the complexities and richness of their lives. Discussion with filmmaker, Bonnie Klein and George Stoney.

For more information: http://www.nyu.edu/disability.council/.

Peeling Bananas

An ex-student of mine pointed me to this blog on media, communication, the body, and drugs,The Banana Peel Project. I have enjoyed it the last few weeks and so may you.

Anthropological Interventions in Transhumanism

Chris Kelty over at the excellent anthropological blog Savage Minds has written a thought provoking piece on why and how anthropologists should engage with transhumanism. He notes that current critiques may be sound but may be missing the boat not only when it comes to some broader ethical questions but when it comes to even identifying the locus and importance of transhumanism. I have provided a short snippet below:

Most of the critiques of transhumanism center around its more speculative aspects, like the notion of the singularity, the emergence of artificial intelligence etc. But I think there is increasingly an opening here for thinking about what we do and what we do not have control over as humanity evolves.

CFP: Special Issue of Disability Studies Quarterly on Autism

CFP: Special Issue of Disability Studies Quarterly on Autism
Submission deadline: Jan. 1, 2009
Projected publication date: Summer 2010

Co-editors: Emily Thornton Savarese, University of Iowa, and Ralph James Savarese, Grinnell College

We are looking for completed articles, from a disability studies perspective, on what the medical community refers to as ASD (Autism Spectrum Disorder). We are especially interested in pieces that engage the so-called “low-functioning” end of the spectrum, where increasingly those presumed retarded and lacking social awareness are writing back to the empire of science. As the field of disability studies has theorized cognitive difference, it has had to refine its cherished social-constructionist approach, making sure to account for physiological distinctiveness in the organ of sensibility, a distinctiveness that has been interpreted in a myriad of ways, most quite prejudicial. We are interested in the burgeoning neurodiversity movement, which has self-consciously resisted such prejudicial interpretations, often revealing the “science” of autism to be anything but reliable and objective. How to talk about autistic difference?

Tactical Biopolitics: Art, Activism, and Technoscience

Tactical Biopolitics

In this period where biological facts, research, and worldviews carry enormous weight, what role does the lay-person, artist, activist, and academic play in engaging with these biological debates? This is, perhaps, the central question that guides the series of chapters in a book, just hot off the press, Tactical Biopolitics. The collection includes interviews with biologists, a piece by the Critical Arts Ensemble, among many others. There are too many interesting topic to list of here but they include the ethics of experimenting with living tissue, the biopolitics of the human genome project, and a piece I wrote on psychiatric survivors among many others. You can see the full table of contents and access some of the sample chapters here

Drugging the Elderly

Pharmaceuticals, especially in the United States, are increasingly part of everyday life, leading to what the critical philosopher Nikolas Rose has called “our neurochemical selves.” The making of this type of self is, in part, driven by the self, but is silently though powerfully aided by hefty doses of advertising. One really gets the sense of this dynamic and the power of advertisements at work when you confront older advertisements, which always seem so, well, Out Of Place, in part, because they were making different selves from the ones of today.

There is one type of “self” that commands far less public signs and signals of and for the making of the neurochemical self: the elderly self, especially those with dementia and alzheimers. Because they do not have the ability/choice to decide what medications they take, especially at the later stages of the illness, advertising is not so helpful. This does not mean, however, that they are not taking psychiatric drugs. The New York Times has recently run a piece on the topic Doctor’s Say Medication is Overused in Dementia, which takes a frank look at prescription practices in nursing homes. While I am not against the use of some psychiatric medications for the elderly (I recently decided to put my mom who has severe alzheimers on an anti-depressant and it has helped, significantly), the use of cocktails for these patients is frightening. Most of the cocktails include anti-psychotics, which often induce many neurological symptoms of their own, are very harsh, and as the NYTimes piece reports, do not even seem to help these types of patients.

The New Autism Rights Movement

Over the last decade, New York Magazine has run some excellent articles on mental health, Big Pharma, and now disability. They recently published this piece on The New Autism Rights Movement and you can get an overview of the article at the The Huffington Post. For those interested in the topic, I also recommend Richard Grinker’s new book Unstrange Minds, which examines the dual life of autism as a disease and cultural phenomena (among many other topics).

update: a comment below alerted me to this blog entry by Stanley Fish on the question of normalcy and difference, sparked, in part, by the debate over autism.

The Biocultures Manifesto

On Friday I read a new manifesto by Lennard Davis and David Morris: Biocultures Manifesto published in the New Literary History. While the assertions and insights may not be entirely novel to readers of this blog, their declarations, nonetheless, are spot on and because of the finesse and clarity with which they write, this manifesto will be part of the arsenal many of us will use for our teaching.

The manifesto covers the co-constitution of science and society, of fact and value, and of the great difficulties of making and grappling new knowledge. Probably one of my favorite sections is the following:

In the end, all branches of knowledge interpret. Interpretation isn’t all that they do, but it constitutes a massive common ground. Scientists set up experiments to generate data that they interpret. Literary critics interpret texts. Judges interpret the law. Sign language and interpreters ad translators transform one lanague into another … Wouldn’t we all benefit by learning the rules or norms by which various discourse produce and interpret their findings? Wouldn’t such knowledge help us improve our own perhaps distinctive interpretive norms and skills…. This learning, while not discord-free, offers a model for dialogue and holds out a promise that interpretative disagreements need no become occasions for violent conflict.

My only beef with the article is that, well, it is lives within walled garden. And I have to say, a manifesto behind gates is a little less of a manifesto. To say this, is not to blame the authors as we are often at the mercy of the journals. However, I think we do have a responsibility to put this issue out in the open and eventually start breaking down the walls.

Medical Genetics Is Not Eugenics

The Chronicle of Higher Education has just published a pair of interesting articles on eugenics, reproductive technologies, medical genetics, and human enhancement (sadly, you need a subscription to access them).

Both are quite interesting and worth reading but I found Ruth Cowan’s position, unambiguously enunciated in her title, “Medical Genetics Is Not Eugenics” somewhat one-dimensional and at times naïve, especially when it comes to her characterization of both technology and the integrity of the medical sciences that we should essentially trust because it is “science” with “good intentions.”

I think the article is important for it reminds us that that we can’t make simple comparisons whereby we collapse past with present, eugenics with medical genetics. It does analytically pay, of course, to pay attention to differences. They matter and often matter for the reasons she highlights, which I will mention in a moment. But to declare the matter closed is far too dangerous in a period when we are still struggling to understand the ethical dilemmas at the heart of many new genetic enterprises and looking to the past, for possible ethical or conceptual connections, may in fact make these more clear.

Here are a few of her basic claims:

“There is, to start with, no meaningful historical connection between the enterprise once called eugenics and the enterprise now called medical genetics.”

“Technological systems are built to achieve certain goals; those goals get hard-wired, as it were, into the components of the system. The chief goal of the eugenicists, “improvement of the race,” was never one of the goals of genetic screening — and it did not become one, even after genomic research had identified the locations of dozens of disease-causing mutations.”

“From the very beginning, the founders of medical genetics — people like Neel, Fritz Fuchs, Michael Kaback, and Robert Guthrie — viewed their basic project as the relief of human suffering, not improvement of the race. Relief of suffering might, in their view, also improve the health of races or populations or societies, but improving the health and well-being of individuals was always their primary goal.”

While I agree with her basic premise—eugenics in the past is not some carbon copy of medical genetics/genetic testing today—there are important reasons to critically engage with current forms of genetic testing through the lens of eugenics in the past. But if we are to take her claim to its logical conclusion, then we should not even bother with this critical exercise; and if we were to simply categorize these two endeavors as radically distinct and unrelated, we would lose an opportunity to cultivate a valuable and critical perspective about the ways in which genetic testing may be replicating some older eugenics logics and biases.

Pride in Maddness, the New Visibility

Those advocates involved in the fight to end psychiatric abuse and generate a real space for alternatives in the area of mental health, often known as psychiatric survivors and consumers, only recently jumped fully aboard the disability rights political wagon. But they have been celebrating pride, mad pride, for a long time.

Recently, the New York Times, who has actually done a better than normal job in covering issues related to mental health abuse, ran a story about the politics of pride ‘Mad Pride’ Fights Stigma (though I honestly don’t understand why it is in fashion and style but hey… so long as it is covered). While celebrations have been going on for many years, one of the reasons for the new visibility has to do with a growing awareness of disability and the politics of stigma, along with the proliferation of blogs and video blogging, a trend that did not go unnoticed in the article.

Unsurprisingly, the mad pride movement must accommodate a variety of voices and viewpoints, a point also made by the Times:

Members of the mad pride movement do not always agree on their aims and intentions. For some, the objective is to continue the destigmatization of mental illness. A vocal, controversial wing rejects the need to treat mental afflictions with psychotropic drugs and seeks alternatives to the shifting, often inconsistent care offered by the medical establishment. Many members of the movement say they are publicly discussing their own struggles to help those with similar conditions and to inform the general public.

Accommodating different can be a “maddening” exercise but surely one of the reasons for the strength and current vibrancy of the movement. To learn more about some current projects affiliated with this fight to end stigma and psychiatric abuse check out Icarus as well as Mind Freedom. For some of the best reporting on pharma and mental health, check out Furious Seasons.

Gork, The Documentary

For those in the NYC-area,  "Gork"  a documentary on the life Adam Terril, "a loud,
charismatic, flag-twirling red-head" with developmental disabilities who now lives
in a group home in Iowa is being shown at NYU and there will be a Q and A with the
film maker, who is his sister.

Details below for those in the area and able to attend.