The first psychiatric survivor archive has kicked off in Toronto and Debian Venezuela is soon hosting a MiniDebconf. The word on the streets is that Chavez uses Debian.. Now that would be a great picture to see.

All the soarings of my mind begin in my blood.
-Rainer Maria Rilke

I have made it back from NYC after a pretty intense few days spent at the Open Minds Conference and Icarus-hosted workshops, “Get Your Freak On.” Both were incredibly interesting and I felt the ambivalent rush of excitement and fear that follows the prospect of working on a new project. While I have spent some time researching critiques of psychiatry, I have not spent all that much time with the people involved, academically and personally, in the various movements. And there is nothing like seeing in the flesh and blood some very passionate political work to get the intellectual excitement brewing.

The first time I went to a survivor conference and protest I was living in San Francisco, deeply involved in my hacker research. I learned about the movement from a civil libertarian John Gilmore, who drew inspiration from psychiatric survivors to develop his free speech arguments for drug legalization. I had never heard of them and was intrigued so I naturally poked around the web. And I was fortunate to find out that their conference was being held the following weekend less than 10 blocks from where I was living at the time. I made time to go and unsurprisingly, it was a powerful event, perhaps the most stunning conference I had ever been to. There was something awfully inspiring about a political movement in which the members had experienced heavy doses of trauma, often through heavy “doses” of “treatment” and yet found the energy, will, and life to engage in political action, and in a society that does most everything to dampen the fire of politics.

This weekend was no less inspirational. Even at the academic conference, the personal stories of trauma, survival, and the complex ethical decisions of “choice” in a landscape dominated by one medical model, erupted frequently. These were important eruptions that sometimes probably for some felt out of place in an academic setting where such outpourings are discouraged, buried deep away never to disturb the “calm” and “rationality” of talks. But without them, the conference would have felt dry, staid, and sterile, which would precisely have been the most disappointing atmosphere to have created for this environment.

All the talks were engaging and illuminating and it was great to see and hear many folks working on these topics and especially working to carve out a different political and somatic reality. For me, the talks by David Oaks and Jackie Orr were the most electric and hopefully I will soon get the videos of them as well as most others (as I (tried) to tape most of the conference) up for those who are interested. In the meantime, David Oaks has already
released his talk, which is worth checking out.

One of the more interesting parts of the conference was that it gave a clear indication of one of the great successes and strengths of the mad movement, which is its staying power, its ability to survive (even if not necessarily known to wider publics) generation after generation, which is more surprising given that the vitality of so many of the political movements of the 1960s and 1970s, vanished or languished. This continuity was marked by David Oaks keynote speech entitled “Unite for a Nonviolent Revolution in the Mental Health System: What 30 Years in the Mad Movement Have Taught Me” and just by the fact that he and Celia Brown were there, both who have been involved for decades.

Beyond that, it was also the new faces, the new groups, that include Icarus, and the
Freedom Center, that attest to the ability for this Mad Movement to thus far escape the cruel ravages of time and its intervention, often causing rifts within and across generations.

Sasha Dubrul who gave a talk during the activist panel and founded Icarus four years ago talked about the deep alienation he felt when he first had encountered the rhetoric of psychiatric survivors and, even despite his deeply critical stance against psychiatry. He wanted to create an organization and a message and a place that “resonates with our actual experiences of “mental illness” rather than trying to fit out lives into a conventional framework.” It is a message that swoops into many territories that includes a stiff, unrelenting critique of psychiatry and the pharma industry all the while admitting that not everyone can survive without pharmaceutical drugs (and being deeply grateful for this), all the while also providing pathways to alternatives. It is not easy territories to navigate, due to the and cracks and crevices between positions but then again, most of life is filled with these bumpy textures and not a smooth plane free contradictions.

If Icarus was born in part because existing organizations did not adequately address existing needs and desires, it did not grow and move away from existing organization but moved closer to them and is now is in alliance with
MindFreedom. And this is key. Difference in a political movement adds vitality, depth, opportunity but this can only be brought into healthy fruition with alliances. Otherwise, deep fragmentation follows, which given the already deeply fragmented nature of our lives, and of the political landscape, can end in political stasis. But so far, the Mad Movement has over years taken “mad anger” to fight a mad system, and given the last 30 years, I am sure will provide many more decadesof mad pride.

Barely 3 weeks into my time in Edmonton, I am off to NYC, so that I can attend the following conference: OPEN MINDS: CULTURAL, CRITICAL, AND ACTIVIST PERSPECTIVES ON PSYCHIATRY. I resisted going, in part because I travelled plenty this summer, in part because traveling is such a pain now, but mostly because it somewhat preverse to hop over to NYC in a day for 3-4 days when it took me a week of non-stop driving to get out here in the first place! But the allure of the conference was too strong, so back I go, down south and out east.

There are not many non-profit pharmaceutical organizations. In fact there is only one but now that they have recently announced that India approved a drug, Paromomycin IM Injection, to cure Visceral Leishmaniasis (VL), that they developed, it is more likely there will still be at least one, and perhaps more of these in the future.

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Originally uploaded by stylishnoodle.

These drug ads are simply not to be
missed. They are somewhat eerie for their familiarity and strangeness. They seem more fabricated and “less scientific” that today’s ads, yet just as fantastical and culturally audacious, in the sense that they promise SO MUCH, in so little.

In a recent post I mentioned that my scalp is adorned with 14 titanium staples. While some may think that I have them because an odd accident incurred during my recent move, I have them because I live in mole-ville and some of them were causing a small disturbance in the hood.

Living here means I have a lot of moles on my body and well, these little masses of brown pigment, while they can be somewhat attractive, and unproblematic, can be unruly creatures that can change on short notice and cause a lot of problems. Now I usually don’t blog about personal things like my moles, but I thought it is worth writing about this as a public service announcement… So if there are any other readers who live in a crowded mole-ville, this is little reminder to check up on your moles, sooner than later.

I have never had a problem with my moles and there is no history of problems in my family but I do have more than the average number of them. In fact, anyone who has met me knows this because they are all over my face, and there is one distinct one, under my left eye that is shaped like a tear, and often mistaken for dirt, more graciously as a tattoo, and most oddly as that black stuff that football players smear under their eyes.

About a year ago, after one of my friends was diagnosed with melanoma (thankfully he is ok), I started checking my moles more frequently and did a full check at the dermatologist. All was ok and when I went to another dermatologist in February, all looked good. Then this summer, as I was running my hands through my hair, I felt a mole and started obsessing over it. I was pretty sure I did not have it a year ago as it was not on my chart and if was, it was probably flat and since I could feel it, it had changed, which is not a good sign… I was traveling most of the summer and it was first in South Africa where I had it checked in a fancy dermatological office in Durban. They dermatologist took a close look and said, “looks fine but have it removed because you can’t track it.” That made me feel a lot better so I enjoyed the rest of my time there and then as soon as I got back I saw a RN at a dermatology office in NJ (it is near to impossible to get a derm appointment without a month’s wait in the US but since they had RNs, I could see someone quick.. More on this in a second).

This person also confirmed what the dermatologists in SA had said but also decided to remove it because I could not track it. A week later a pathology report came back that showed it was dysplastic and that the cells were changing, and thus considered abnormal. Some dermatologists consider this as pre-cancerous, some don’t, but it seems to be that there is more likelihood that this type of mole can turn into cancer. So the “treatment” is a full excision where they remove 1cm all around the mole. I got word of the report around the 8th of August and the only time they could fit me in for surgery was the 25th, a day after I was supposed to leave for Edmonton, which changed my moving plans (and explains why I arrived here so late, making getting my stuff complicated given school is in session and parking is tight).

I then scheduled an appointment for a a full body check and removed another mole that once biposed was confirmed as dysplastic and though not as abnormal as the other, the recommendation was to also remove the surrounding dermis.

Now, when I called the surgical coordinators, they could not fit me in another time slot to expand my appointment for 2 surgeries because they were “full” even though I explained I was moving away from the U.S. They said that it was up to the surgeon to decide whether to operate on the second area and since I was leaving to Canada the NEXT day, he would probably agree but no guarantees.
So of course, I wanted the stuff out because I was not sure how to go about getting the procedure done in Canada. My insurance does kick in the second I sign up and there is no Bull-Sh*t pre-existing clause stuff here but because I could not get an appointment in time, I would probably have to go to a medicenter that performed these operations and not all do. Though I was confident I could get it done eventually, it would take a lot of inquiring and after a 7 day drive and all that follows a big move, I decided it was not the thing I wanted to do.

So I got to the office early on the 25th and one of the first things that comes out of my mouth when I saw the nurse was that I was leaving the next day to Canada and I did not know when I could get care there. Of course the first phrase that pops to mind for many Americans when you say “Canada” and “health care” is “socialized medicine” which most people in the U.S. associate with bad healthcare and long waits.

Now on the one hand, I have to admit I, to some degree, share those fears, which is one of the reasons I wanted the extra dermis removed asap.

On the other hand, I think that the claim is a big fat red herring because in fact for many Americans, they *do* have to wait a long time for many procedures (dermatology is classic for this, and even my first procedure took a 3 week wait and if I wanted to schedule the second one, it would have taken 5 weeks) or worse, they have no insurance, which KEEPS many people from going to a doctor in the first place.

So American medicine is not necessarily “fast track” and in a dual sense: in the literal sense because HMO healthcare is like socialized medicine with capitalist prices, and because many people without insurance also probably avoid the doctors until they are in bad shape… And even though I have insurance, they would not pre-approve anything as I am in some awful pre-existing clauses because my insurance had lapsed for 2 months this year. And even though I have never had a problem with a mole in my life and did not even see one doctor in the 6 months before I got my insurance (which is when the pre-existing diagnosis would pertain to) and even saw a dermatologist in my HMO network in February who found nothing wrong, the insurance wants to make sure to add as many roadblocks as possible in the hopes of never paying up. Great.

Now I am very grateful the nurse at the derm office proceeded to get the doctor to perform the 2nd surgery and he also was more than ok to do it. I wanted to give them big fat hugs after the procedure but you know, you just don’t do that type of move in your blue robe after the surgery.

Before the surgery I naturally “hit” the net to gather a lot of information on moles, cancer etc… I join the millions around the world who–for better or for worse–use the Internet to supplement (some I am sure supplant) their doctor’s medical advice. In fact, a key part of my second project on psychiatric survivors looks at how patient communities are building a sphere of amateur but expert medical knowledge exchange. It is an enormous sphere of vibrant peer-to-peer knowledge production but one that many are uncomfortable portraying as such because it involves a lot more risks and ambiguities than exchange knowledge about, you know, how to get your blue tooth working…. But if we bracket the realm of alternative remedies (which admittedly is a HUGE part of this type of exchange), I think in fact, patients are pretty savvy and are engaging in risk-averse behavior by going on the net and illness forums. A lot of what is exchanged are warnings about side-effects, detailed accounts of experiences with procedures, and yet a lot of red flag raising that one’s experience may not match another persons but may be still helpful. It is a lot of information that often may be missed during the exchange with the doctor and derives from what is another type of expert knowledge: one’s bodily experiences with medicine, illness, and other related procedures.

But I have to say that when researching melanoma and moles on the Internet, I was somewhat stumped. There is just too much variation out there to make informed judgments and abnormal but non-malignant moles have the same characteristics as melanomas. The Internet, in this case, seemed helpful to provide some baseline information and then just served to freak me out more than necessary so I turned away for the time being.

For now I am just adjusting to the staples, which come out in another week. The procedure did not hurt much but the first week after the removal my head was much more sore than I had expected. Not so fun when on a marathon road trip, which is finally over!

Though I have lived inland for many years, I identify quite closely as an ocean person. Many of my weekends as a kid were spent sculpting houses with the sand, and being thrown around by the waves. Later I got to spend time living on a boat and I knew that one day I would return. A Primevial Tide of Toxins makes me wonder if my plan to retire on a boat in 30 years will even be possible.

In many places — the atolls of the Pacific, the shrimp beds of the Eastern Seaboard, the fiords of Norway — some of the most advanced forms of ocean life are struggling to survive while the most primitive are thriving and spreading. Fish, corals and marine mammals are dying while algae, bacteria and jellyfish are growing unchecked. Where this pattern is most pronounced, scientists evoke a scenario of evolution running in reverse, returning to the primeval seas of hundreds of millions of years ago.

Many in the geek community know about and follow closely the politics of patents. So this site, Big Patents will surely be of interest to many, especially those who really need to know all about a patent and its history.

update:reading these patents can also provide hours of odd and confusing pleasure
From the site:

BigPatents contains a novel patent data set with features found nowhere else. You’re free to browse through the data and use our search to easily find patents.

If you choose to become a premium member, you will have access to the complete, real-time family tree for a patent or application, including all continuations and divisionals. Our Premium Info page has more information about premium accounts.

Premium users can also track changes to any patent family tree. Once you begin tracking a tree, you will be notified of new transactions for any of the applications in the tree, when any new applications are added to the tree, and when the status of any of the members of the tree changes

Writing blog entries in South Africa did not come so easily, mainly for technological reasons. While for the first 4 days of my trip I had steady Internet access, most of my time was spent enjoying the Law and Society Summer Institute. Once over, I headed from Joburg to Durban and my access became much spottier, not to mention that Bernard, my indefatigable host, made sure the days were filled seeing the gritty but beautiful urban beach town, hanging with the crew of University of Chicago students/graduates that descended upon the city, and having a go at sufring in the Indian Ocean. In the evenings, I did have some free time, but they were too chilly for me to do much of anything but burrow myself deep under a small mountain of covers and pass out after a day filled with plenty to do and see.

The theme of the conference I attended was the intersection of rights and regulations and given the Summer Institute was held in South Africa, it was not all that surprising that much of the conversation centered on one class of rights, those of human rights. Since the end of apartheid, SA has become a particularly-impossible-to-ignore beacon for human rights, and acts as a sort of modern guiding light that has defined the meaning and institutionalization of human rights post-WWII. So if WWII and the Holocaust represent the generative genesis of human rights, South Africa represents a new era of human rights, a place that revisited, rejuvenated the discourse and implementation in a post-Apartheid Constitution that has been touted, world-wide, as exemplary for its generous commitment to equality and other rights.

In this respect, one feels, quite everywhere, the collective pride of a nation who managed to end a brutal regime and it did so under the gaze of world who followed the drama on TV screens, college campuses, and newspaper headlines. As SA has moved to another era of picking up pieces and trying to build a more equitable society, many in the world are still eagerly watching. But pride does not stand alone, in isolation, for it mixes with other collective sentiments. The collective admiration and pride of a nation, like the sweet water of a river, visibly and freely mixes with a more salty frustration and anxiety to produce an in-between brackish state of affairs. Pride in other words sits alongside social anxiety, which palpably manifests at different registers and tones, to texture the cultural and political landscapes of SA.

The frustration follows from the fact that many are still living in dire poverty and in the last ten years, many steady jobs have vanished. Shantytowns, the symbols and material conditions of apartheid, are still omnipresent (though very well hidden from the middle class and the rich). The ruling government, while having roots in communism and socialism, has to contend with a world-wide regime of neoliberal governance and, thus, must try to balance satisfying commitments with the outside world with delivering promised goods to its population, demands that often run uncomfortably counter to the neoliberal logic of deregulation and financial austerity. Alongside this or perhaps as a manifestation of it, the talk of the town, especially in Johannesburg, is of the rampant crime. As a sign of crime and fear, most middle-class and wealthy houses are adorned with metal fences, barbed wires, electric fences, and a simple sign from private security companies (Chubb being the most common in Johannesburg) that announce they provide armed response security to break-ins. This is serious stuff. And while some of the fear of crime is a self-perpetuation exaggeration of itself (and as my friends explained, before the end of Apartheid the monitoring of crime was not as common, so crime statistic can only go one direction, up), it has in certain parts of cities spiraled out of control. And if there comes a time when the crime abates, the architecture of barbed wire and security services is now really an architecture-in-place and will be hard to dislodge from the mental and physical spaces of SA.

So more than anything else, I found that the vibe of SA seesaws between pride and anxiety. As a visitor, you are enveloped in this dyanmic duality. You can’t help share in the pride now enshrined in national monuments and museums. But at the same time, you also are not sure what path the nation is heading in and you too share in the fear of crime and move your body and belongings cautiously through the cities.

There is no doubt of the governmental commitment to provide services like health care and housing, a commitment that in places like the United States seems to exist more like an endangered species on the brink of perpetual extinction. And so it was awfully refreshing to be in a place where talk of such things is not seen with a suspicious eye that in the US is often tagged as something that runs counter to the realization of freedom and a just society. But whether these important goals can be brought into the plane of existence is another question, one that is not unique to SA but is something that many other countries, especially Latin American countries, from Venezuela to Bolivia are also asking and trying to answer.

Bernard and others reminded me that South Africa is number 4 in terms of producing new millionaires, which is quite a remarkable statistic given how many nations there are in the world. But despite the poverty of the place, this wealth is evident and there was one place in particular that symbolized this: Melorse Arch. Located in Johannesburg, this is a “lifestyle” compound/gated community that mixes posh residential condos with posh restaurants and bars. To tell you the truth, I have never seen anything like this and it was probably been the most extraordinary thing I saw in South Africa.

The United States and Puerto Rico (where I am from) and undoubtedly many parts of the world are no strangers to gated communities. But Melrose Arch took the implementation of them to a whole new, somewhat disturbing, level, in part because the domestic sphere of expensive housing co-mingles so intimately with sites of accentuated consumption, reminding visitors that the point of life, (hence the name lifestyle) is to make money so as to consume, and to do so lavishly. And what brought this really home was that the South African Bond Market was also located here in Melrose Arch. In fact we could see the building clearly from our restaurant, which proudly displayed a large Elephant statute (which, I think, harkens to the large bull in Wall Street NYC). I guess if you are a bond trader, and dislike commuting, and like good places to eat, well this is the place for you as you don’t ever have to leave your complex. Work and play become seamless and thus this place is perhaps one of the most powerful signs that the point of work is to play, is to consume, so that a perfect cycle is reached in which making money is a path for self-pleasure (or at least nuclear-family self-pleasure), a form of life, that does not have to engage with the rest of society, literally. Of course, there are many layers of production that do exist and make a place like Melrose Arch possible yet are well hidden from the visitors and residents of the compound. But Melrose Arch is not fully gated. It is open to outsiders so they can enjoy the fine dining, and if you sit in one of the many outdoor tables, one can fully take in the glittering performance of this social cycle, and for some, undoubtedly it is a measure for and of the good life, the right life, that to which others will aspire.

What I find interesting about the place is that it captures, with unmistakable clarity and precision, the point of much of neoliberal economy, especially the love for finance (in which money seemingly is made out of nothing), a robust service economy (the service in the restaurant was unlike anything I have seen, with people bring you ceramic jugs of water to wash your hands, live entertainment, outdoor fires, and blankets, henna painters etc), and consumptive pleasure. To drive home the point, in Melrose Arch, there is not even a supermarket; lest there be any mistake, this place was constructed as a place of consumption, through and through.

There were many other posh areas in South Africa, and as I mentioned earlier, the impoverished areas were kept a distance from middle class neighborhoods, so much so, that in some areas, like Cape Town, you really had to go out of your way to see them (again this is very different from many parts of Latin America where, in an instant, poor neighborhoods switch to wealthy). On the other hand, quite visible were things like malls and there were a lot of them. Apparently South Africa has been a testing ground for the modern mall. To get to the malls, there are very good roads to travel (much better than most of Latin America) and other basic services like tap water, and infrastructure like airports and phones, are in excellent condition. So it was somewhat surprising and frustrating that Internet services outside of business are somewhat scant, expensive, and slow. Sure Internet services are the best in Africa and you can get Cable, ADSL etc. at home but you have to pay a pretty Rand for it and on top of it, the access is pretty slow. Now, there are many parts of the world where this is the case (though apparently in a study that compared 12 countries at a similar lever of development to SA, Internet access was 10 times more expensive in SA than the most expensive country which was Chile), but for me, it was the juxtaposition of having such solid infrastructure and wealth mixed with lackluster Internet access that made it somewhat odd.

And it also made me realize how much the Internet and access to it had not only saturated my life, but how I have come to see it as a something creeping close (though not the same) as a basic right. Of course, security and self-determination, food, shelter, and health services are for me are the basic architecture of human rights. Without these, existence in the most basic sense becomes difficult. Access to the Internet, though in no way is indispensable to the basic conditions of living, can at least greatly facilitate the type of political work and organizing needed to demand other basic human rights. In this sense, it is more like an extension of or at least serious complement to basic services like clean water, and it seems like once there has been an investment in securing fiber optic (which I am sure is pricey), the cost of maintenance compared to physical infrastructures is so much smaller that it is really worth the initial costs.

This bring up some difficult questions and vexing specters related to many of the human rights (in the Universal declaration), which are I think not so much so how to define them in a general sense (I think this has been laid out somewhat well) but how to specify them so as to realistically implement them . On the one hand, the flexibility and vagueness of human rights is what gives it tremendous currency. Folks around the world have wielded the discourse of human rights to make demands that resound strongly and profoundly. But once a proclamation of a human right has been made, like article 25:

“Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control..”

it seems like the real hard work is about specifying and implementation. We may easily agree that an adequate standard of living may not be Melrose Arch but it still does need definition and a plan for implementation. And so there seems to be plenty of room in human rights politics to move from the state of declaration to that of strategies of implementation.

Hannah Wallach is not only amazing because she introduced me to the trippiest game ever, Rez (and is an amazing player herself), but has worked diligently over the last few years to get more women involved in free software. Not only is she one of the ladies that help ignite Debian Women, she has helped spearhead an initiative to get more women in Gnome via Google Summer of Code. So a double thanks to Hannah and read on below for some more info on the initiative.

BOSTON, Mass – June 13, 2006 – The GNOME Foundation is offering USD$9000 to female students in order to promote the participation of women in GNOME-related development.

The money originates from GNOME’s participation in the Google “Summer of Code” program (code.google.com/soc/), for which GNOME developers will mentor 20 students working throughout the northern summer on GNOME-related projects. This year GNOME received 181 applications to Google’s program, yet none were from women. The GNOME Foundation has therefore chosen to reinvest Google’s contribution into a new program designed to increase the participation of women in GNOME. The program has no official relationship with Google.

“Free software prides itself on being open to anyone with a good idea, yet less than 2% of free software developers are female. We, as a community, need to be actively working to change this statistic, and programs like this one are a much needed step in the right direction.” said Hanna Wallach, a GNOME developer who is involved in several projects that encourage women to participate in free software development.

The Women’s Summer Outreach Program is currently accepting applications from female students. Accepted students will receive a stipend of USD$3000 over a two month period. A pool of project ideas is provided at www.gnome.org/projects/wsop/, though original proposals are also encouraged. Projects may either be related to GNOME directly, or indirectly via projects such as Gstreamer and Abiword. Each student will be assigned a mentor to provide guidance throughout the program.