After about 6 months of initial research in the Bay Area, I had to make a choice over the future direction of my more directed fieldwork. Would my project be on Silicon Valley, its religious fervor for the exuberant technology start-up, with the geek entrepreneur (probably with some affiliation with Standford) at its center stage, or would it be more broadly about free software and the culture of geekdom? I chose the later, for various reasons, but I think I wanted to write a dissertation that did not bleed with cynicism but instead flowed and flowered with a lot more joy than could have been possible if I had stayed within the grasp of the start-up and the venture capitalist.

That said, I learned a lot about SV, took a lot of notes, and read most anything I could get my hands on whether the work of San Jose Anthropologist,Jan English-Lueck or published in magazines like Mother Jones, Harpers, and even the National Geographic. One of the luminaries that writes about SV from a cultural perspective is Paulina Borsook. And she is fine writer who admittedly has ticked me of on occasion (to be precise because she collapsed too much of geek culture into that of the specific SV world in Cyberselfish, which at the time I found almost personally offensive, probably more than it should have).

Today I just came across a short, older but very illuminating piece of hers “The Disappeared of Silicon Valley (or why I couldn’t write that piece)” which is as much about the limits of historical representation in general as it specifically about the failings of start-ups in SV at the end of the recent boom and bust cycle.

So her goal was simple enough: To find people involved in starting new high-tech whose companies had died.. and to find them to get a more visceral and cultural window into this experience. But it was a near to impossible task. Despite her impeccable record with confidentiality and a far flung social network, she could not get anyone talk about these ostensible “failures.”

There has been a good amount of writing on the limits of historical representation because the archive or what comes to be the archive is a function of power and it is usually the powerless who are left out, as the work of Michel-Rolph Trouillot has so eloquently shown. But while it is true that some CEO of a dethroned corporation may be “powerless” in some sense of the word, it is not what we associate with the word.

But in fact, the power of stigma of failure in a region that magnifies an already well-develiped cultural fetish of success (especially, I imagine, among male graduates, of places like Stanford Buisiness School), is enormous, so much so, that it seems one can only write about the experience, as Barsook has done so well, through the reality of a lack, through silence.

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.

Joey Hess from Debian has come up with a pretty nifty analysis of thread patterns in email. This is a great example of the geek technique to transform what seems like chaos (and can surely be experienced as such) into something more categorical, segmentable, and thus manageable.

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.

I am nearly done with the marathon move. After a small hold-up in Canadian customs (for no apparent reason except I got a border official who had incorporated the role, a full 110%), my stuff is here, unpacked, and in decent order.

In between unpacking, I have been able to experience some of Edmonton–from the nightlife to its administrative face (signing up for health insurance and a Social Insurance Numbers, for example, both of which were easy as cake) and I have to say E-town gets a far far far worse rap than it deserves. Ok, the weather is nothing to swoon over, and it is already getting far colder than I am used to but bracketing that detail, it is a pretty neat city. Now I tend to like the mid-size cities (Minneapolis, Madison, Philadelphia, Portland are some of my favorites in the U.S) over the mega-gargantuan-city and Edmonton fits this bill with just under a million people. And perhaps it is also just that I am digging some Canada-wide features (affordable and immediate health care, “licensed” cafes, a saner pace of life, the pleasant and earnest character of many folks) but there are Edmonton-specific attributes that are pretty nice too.

Before I get to them, it is worth noting that every time I have told people that I was going to Edmonton, they would either: 1) admit that they did not know exactly where it was and thus could offer no opinion whatsoever (and I was one of those folks until I looked on a map) or 2) blurted some negative reaction like: “do you really have to go there!” though most of those people had never been, but had a sense of its northernly location.

Perhaps my favorite reaction came from a blackberry forum where we posted a question about good data plans in Edmonton/Canada. Most of the replies stuck to the topic, but one person decided to spew his unadulterated thoughts on Edmonton:

i feel sorry for u going from NYC to Edmonton “Edmonton sucks” you’ll be happy to go back to NY..
You go from a city that has life to a dead one.. from having good bb plans to sh*ty ones..

hope your getting paid good

Ok, admittedly, the data/cell phone plans are lackluster but I think this person either has had some terrible times in Edmonton (and holds an unhealthy grudge), has never lived in NYC or has a warped sense of what the good life in a city means. Sure NYC is an amazing place, and is my likely future home, so I am not going to trash it but, like any city, it has its shortcomings.. like unfordable housing

But time will tell as to how I feel about Edmonton after the winter. Perhaps when it reaches freezing temperatures, it does turn a leaf, and become dead but then you hit the mountains, no? But for now I am digging the HUGE pine trees, rivers, and ample sun of E-town.

Last spring I was invited to join an academic guild on WoW, but since my computer runs on, with, and through pure freedom (and I was too lazy to run an emulator and my computer does not have the processing power for it anyway), I did not join.

But reading Steven Levy’s recent piece Living a Virtual Life makes me wish I had a more powerful computer or had sacrified my morals… Because hundres of naked gnomes protesting, is well, just worth it.

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!