Since Debconf Mexico, parts of my blog have been published on planet debian. To be exact, only the categories, Debian, Academic and (I think) Tech are included while a plethora of other ones, such as Canada are not. At times I feel pangs of guilt or discomfort because a number of my academic posts have, on the surface at least, little to do with Debian, F/OSS, tech or law. But many do have either to do with law or science more generally, so I hope they are of some interest to a group of folks who seem pretty keen on these topics.

Soon though, I am going to be in monk-mode, working like a hard working ox on my manuscript, full-time (now I am sharing my mindspace with an article on survivors and one that I have to present in January on the battles between hackers and scientologist, which I am pretty excited about too). I have just finished reading about 15 articles related to my book that have help to reignite the fire of interst, after burning out after years and years and can I add a few more years, on the same topic.

So bear with me as soon there will either be many posts related to just F/OSS or at least none at all as I will be so overtaken by the work!

I now need to start looking for a flickr replacement. Yes, I am offended by the patent.

Recently I read an amazing review of patient advocacy and health (counter)movements by Steven Epstein from the STS program at UCSD. It is still a draft but bound to be published in the New Handbook of Science and Technology Studies and when it is, anyone who works in this area will gain so much from reading the review. It was stunningly broad yet highly specific. He is able to synthesize an enormous literature on patient advocacy, a field that has seen a blizzard of activity, especially in the last twenty years. Along with providing points of entry and departure into the field, he also examines who the burgeoning interest in the field of STS.

What I found interesting is that there is very little work being done on a topic I happen to know a lot about, lyme disease and whose politics I have been following since at least 1999. I am not sure why the lacuna but it is an odd disease dripping and screaming with controversy and seems to stand apart from many illnesses, in part because of its odd dual existence. On the one hand, it is an illness that the medical establishment totally recognize as “real” (and thus in some respects is unlike the class of syndromes from MCS to chronic fatigue, which another STS researcher, Joe Dumit provocatively describes as “illnesses you have to fight to get”).

But that is only half the picture because mainstream medicine tends think that lyme is not only easy to diagnose but also to treat, so much so that if a person thinks they have lyme (even after a round of antibiotics or lacking diagnostic markers), the are either seen as suffering from something else (and usually then told they have one of those highly contested syndromes), or more often just crazy. So it exists dually: at once recognized but only narrowly, so that in another form, that of chronicty, lyme cannot exist.

It is this dual quality of lyme that defines and shapes its politics and just recently, new developments have fueled the controversy. Namely it follows from the Infectious Diseases Society of America new guidelines for the diagnosis and treatment of lyme, published last month. In a nutshell, they basically re-reduce lyme to a very easily diagnosable and treatable illness, calling for even more strict guidelines for its diagnosis than now exist. They sanction a small range of blood tests and thus totally nullify the role for clinical diagnosis, which even the CDC had acknowledged as vital in times past.

Unsurprisingly this has thrown the chronic lyme community in a total tizzy and they have not taken this sitting down. A petition has been launched and protests have been planned. And amid the controversy, politicians have already heard the call to arms. In the state where lyme is a famous entity for it was first discovered there, Connecticut, its Attorney General is calling for an “anti-trust” investigation into the Infectious Diseases Society of America, in essence for using their clout and prestige to legitimate a gold standard in diagnosis and treatment, when it seems far from obvious that this should be the standard. According to the LDA press release:

“The national non-profit Lyme Disease Association (LDA), representing more Lyme disease patients than any organization in the United States, applauds Connecticut State Attorney General Richard Blumenthal for beginning an investigation into the Infectious Diseases Society of America (IDSA) Lyme disease guidelines development process. In an unprecedented move, the Attorney General’s office filed a Civil Investigative Demand (CID) to look into possible anti-trust violations by the IDSA in connection with exclusionary conduct and monopolization in the development of the Lyme guidelines”

What I find so interesting is that this latest chapter in the grungy and torrid politics of lyme encapsulates the very nature of the politics of lyme, which really is about the “agency of bacteria” and in the Latourian sense. If Pasteur had to put a lot of effort into making credible the bacteriological model of disease as Brunto Latour covers in The Pasteurization of France and if there was plenty of future prostelyzing needed to bring credibility to the bacteria to more general publics, as Nancy Tomes illustrates in The Gospel of Germs, well now, I think we are in an era where we think we have such intimacy with the biological ins and outs of bacteria, it is almost impossible for the scientific community to imagine bacteria as such complex organisms that they can be in fact very difficult to diagnose, eradicate and treat. It is just no longer part of the basic conceptual universe of most doctors and medical researchers to think of bacteria in this way.

The LDA press release acknowledges this very fact in the following way:

“The October 2006 guidelines do not acknowledge that a complex bacterium such as the Lyme disease spirochete could possibly survive in the body and the brain, evading the immune system and short-term courses of antibiotics.”

For many lyme researchers and doctors, since lyme is a bacteria and we know how to treat those pesky critters, it is frivolous to even imagine or contemplate otherwise. I would call this a hubris that arises not from the arrogance of doctors and the medical establishment but following the heels of success that medicine has indeed had with conquering the bacteria with antibiotics. Even new forms of poweful and highly resistanant TB are still treatable with a potent cocktail.

That is, at a cultural level, I understand the blinders. At a political level, however, because people are suffering and because it is plausible that lyme can exist chronically, it is imperative to unseat this cultural comfort borne from past success to get the ball of research rolling anew.

I think bacteria (and parasites for that matter as a recent smattering of articles demonstrate) are a lot more savvy creatures that should be treated as novel, wondorous creatures, once again. I would dare say the medical establishment, by refocusing energies on that which they think they have solved, would find themselves quite surprised.

updateHere is an article discussing the issues.

So I am in Alberta, Canada but I decided not to get a local phone number mostly because I have a VOIP phone that works fine and it lets me call Puerto Rico for free, and allows my sister call me for free too.

But not having an Alberta 780 area code can be quite problematic at times and the latest chapter in the confusion has come from trying to get the IBM warranty folks to accept that you can call from Alberta with a non Alberta area code and realze that even if they accept that, the computer is the one wearing the pants and thus making the decision…So even if you convince them that new technologies make this possible, the transaction is still sabotaged because in the end, they rely on computer to get the actual service repair person to call you and the computer relies, and can only rely on the area code., who can only see that an area code 773= USA, so then it gets a US rep to contact you back after the initial phone call.

Here is an IRC transcript discussing the confusion, which I think is pretty amusing:

m: they are so confused
m: the guys says “what province are you in?” I say “Alberta”
m: and then he gets my number and he says “You aren’t in Alberta, sir”
m: and I say “Yes I am, my phone number is a US phone number, but I assure you, I am in Edmonton, Alberta right now”
m: and he says “Are you a canadian citizen?”
m: and I say ‘no, do I need to be, in order to be in Alberta?” and he says “The problem is, you are actually in the US right now”
m: I AM NOT IN THE USA
biella: heh
m: so I had to say “You realize that cell phones and voip technology allow you to roam outside of the USA and still use the same phone number?!”
b: and then what?
m: well he said I needed a canada number or their system would send it to the states
m: regardless if thats where my address is
m: their computer is too smart
micah anyways
biella: or not smart enough

Well, we are now using my office number so hopefully all will be OK.

One of my fondest Debconf conferences was Debconf4 held in Porto Alegre. While the temperature was cool, the atmosphere was vibrant.

One of my favorite parts was meeting the various women involved in Debian and free software more generally (aparently known there as TINC) and one in general was especially vivacious, Pia Waugh. She was recently featured in an interview in computerworld magazine. Either Australians inherently have a lot of energy or they put something in the water “down” yonder, because she sure has her hands in a lot of interesting projects.

So check out the interview to get a sense of one of the leading ladies of open source.

In the past and for my hacker course, I have taught Paul Ceruzzi’s History of Modern Computing but the book was a little too dry to fly high with first year students but thanks to Joe Reagle’s excellent syllabus on the Impacts of Technology, I read a short but very sweet (and teachable) piece by him entitled An Unforseen Revolution: Computers and Epectations that not only gives a window into the early history of the computer but provides a very nice conceptual entry as to why it is hard for inventors of a new technology, such as the computer, to “foresee” and fully come to terms with its future uses, full range of capabilities, and utlimately its impact.

Basically the context of invention combined with the training of inventors (which in this case, the first American digital computer, the ENIAC was invented by a physicst and an engineer for mathematical computing) stitches and thus initially limits the vision (and thus use) of the technology largely to its original purpose, while precedding technologies provide the conceptual juice drunk to understand the meaning of new technologlogies. So while today we clearly think of computers as a meta-machine, that can be whatever-machine-in-the-world-we-so-desire (so long as someone programs it to be “that” machine), in its time, with people so accustomed to machines as having one function, the cultural imagination was stuck. As Ceruzzie humorously conveys, “a machine having such general capabilities seemed absurd, like a toaster that could sew buttons on a shirt. But the computer was just such a device; it could do many things its designers never anticipated.” p. 126

With the passing of time came new innovations (Ceruzzi identifies new developments in programming as key in this regard) and use in new settings (notably businesses), the stitches were loosened and finally unraveled so that the computer came to take on the meaning it has acquired today.

One perennial topic of inquiry in the field of STS concerns how particular contexts and other factors shape new meanings, visions, and uses, or just limit them, along with unearthing the labor that goes into making new inventions or scientific theories more generally accepted. This is a great little piece to teach incoming students about some of these concerns in STS, and without a lot of heavy-handed anything.

And to make the project of teaching really fun, add this short clip from the Muppets, where Dr. Bunsen Honeydew totally ignores the Very Large Gorilla about to gobble him up because of his blind faith in technology.

While anyone who has had a

1) medical condition and 2) access to Internet in the last five years

probably knows that patients are increasingly using the net (and now google) to diagnose medical conditions, it is only now that the “medial establishment” is starting to recognize or really admit to the reality of this widespread phenomenon and even doing studies on them, such as the one released a few days ago by the BJP Googling for a diagnosis—use of Google as a diagnostic aid: internet
based study. The study sought to ascertain how effective google was as an aid in medical diagnosis. As various new outfits are reporting it is moderately high.

What I love about this study and the corollary reporting is the naive tone they have to assume, transmitting the news as if the public knew very little about this, and would in fact, be induced into surprise!!!!!!!!!! when first facing the new. But in fact, I think it works in the opposite way. The surprise is that they took so long to admit to what was in front of us for many years now.

While the news articles reporting on the study stay within the province of doctors, the report acknowledges, in fact opens with, the fact that patients may be forging the path in Internet-diagnosis. The authors write in their second paragraph:

“It seems that patients use Google to diagnose their own medical disorders too. After evaluating a 16 year old water polo player who presented with acute subclavain vein thrombosis, one of us (HT) started to explain that the cuase of the thrombosis was uncertain when the patients father blurted out “But of course, he has paget-von Schrotter symdnome. Having previously googled the symptoms, he gave us a mini-tutorial.. and the correct treatment for the syndrome. This experience led us to ask “How googe is google in helping doctors to reach the right diagnosis”

Again, what I love about the tone of this opening is that it is as if these doctors stumbled on a great but deeply hidden fact to make a breath-taking discovery, one that, however, since is it is SO very emergent and thus still not *really* verified by Science, they must proceed with great caution, qualifying with phrasees like “It seems that patients use Google to diagnose their own medical disorders too”. I am sure they and most doctors are personally are not so naïve but since this has been something virtually without no official acknowledgment among professionals and in the journals, the genre of writing just requires it to be framed cautiously.

As fun to read are the comments, for they stretch from moral panic:

“The implication that ‘googling’ be an adjunct to proper medical school training, continuing medical education through courses and reading peer reviewed journals is laughable and bordering on dangerous. I am shocked that this has been published by the BMJ.”

to celebration:

“For the modern dermatologist, the internet is indispensible and google is only the start, and for this reason a desktop computer with high speed internet access is an essential tool for all clinicians. Long live the information superhighway!”

While others muse on the broader emacipatory possibilities

“One can imagine the benefit to young doctor in developing country who now have access to a grand medical library in their hands.”

I am especially interested in this very dynamic because it is one pillar propping my next project on psychiatric survivors, which exceeds the particular topic of challenges to psychiatry in its general focus on medical/patient reconfigurations following from Intent-based activism, self-help, diagnosis, and critique. And for those who think I have made a radical departure from my last project, here is where I see one (of two or three) threads of continuity: for patients are generating an enormous amount of “amateur” knowledge, that I think is not unlike the peer-to-peer production of software hacking, and it is a form labor usually accompanied by a strong critique of expertise and other medical practices.

I am now reading some literature on patient activism, like the issue from the February 2006 in Social Science and Medicine that collects 11 articles on patient organization movements. For those who work on this topic, the collection is worth your while and the editorial introduction by Kyra Landzelius is stellar. It is not only written beautifully (which I think is rare for these openings because it is often a rote, unimaginative regurgitation but this was a pleasure to read) but provides an engrossing overview of some new trends and some of the diverging forms of politics that arise from what is really a motley bunch of organizations and contests in patient and anti-patient activsm.

She opens by defining four spheres that shape and inform the forms of contents that are part and parcel of these patient movements, the four being:

1. Revolutionary feats in technoscientific engineering
2. Restructuring of healthcare systems across industrialized nations
3. A Revised contract between science and the public stemming from a criss of confidence in science
4. An upsurge in the articulation and diversification of health activisms (p. 530)

These four are key but I was shocked that there was no specific inclusion—though it comes out plenty in the introduction in other ways—of the Internet. For while I am no techno-determinist, the Internet I think, can’t be ignored for it has fundamentally changed the map and tenor of patient activism, allowing for more rapid connections between various stakeholders, providing a medium by which those officially unrecognized illnesses are given shape and form, and where an ethical cultivation of self-help, self-diagnosis, self-medication, along with copious critique and forging of alternatives is happening, right before our eyes, virtually in real time.

It is the medium by which a new chapter of patient activism is being written and I think it is a real mistake not to give it serious attention and credit. And perhaps one of the most interesting things about it is that it without it, it would leave many otherwise home-bound, sick folks, without a medium by which to engage in political activity or even community self-help, for let’s face it, these take a lot time and energy.

When you are sick and home-bound, for example, there may be a limited number of types of engagements you literally have the energy to partiicpate in and the Internet lowers the barrier of political entry because of its ease and because you can still type away, even when feeling otherwise totally awful… This may be a brute material point but nonetheless, key to understanding the political power of the Internet.

Now of course the question left is will Google capitalize on this and create “Google Diagnosis”?

Read and perhaps sign the letter urging discussion for open access in Anthropology!

So how do you manage your time and daily activities?

I have decided that as much as I have tried managing my life through digital mediums usually in the form of PDAs or some web application, they failed for feeling to remote to help. To organize my life, I rely on treeware stuff: a calendar, scraps of paper, and post it notes. I think I need the tangibility of the paper and my hand moving for anything to really register the urgency.

There are times that I do rely on emailing myself reminders and I do like that system. So it was good to find out about a simple web tool, Neptune based on David Allen’s “Getting Things Done that sends you email reminders among other things. Its functionality is not extensive but I think it is simplicity that helps to to “get things done.” I was reminded of it today after being told that Getting Things Done is a really good book to read to end the vicious cycle of procastination. Maybe I will finally get around to reading out. But if you already do use a web took to organize your projects and like the method outlined by David Allen, docheck out Neptune.

I just got back from 4S, which happens to be one of my favorite of the “large” professional association conferences. Ok, 15 minutes to deliver talk is the equivalent of being treated as canned sardines, and thus totally unpleasant, but I feel like I can go to most any talk and find it relevant or interesting to my own work. I t is certainly more manageable too in terms of size than something like the AAAs which also gives you a paltry 15 minutes to present and worse, the association has been treading in some ethically problematic territory lately, so much so, I would rather throw my money to the other AAA.

While in Vancover, my Internet access was near to nothing (I was staying with a friend who I have not seen since the summer of 2002, but alas, thanks to chatting we have been in pretty consistent contact). When I came back I came across some discouraging but not so surprising new news on the AAA and their cowardly decision to fight the FRPAA that would mandate open access for articles derived from federally funded research… The cherry on top of the cake was they dissolved the AnthrSource Steering Committee formed precisely to figure out how to open up access, no less!

Alex Golub, a Savage Minds blogger, and a now ex-member of AnthroSource committee has written an excellent roundup of the story (link above) and Peter Suber, also has two very nice summaries, including links to the appropriate documentation.

This year since I am curtailing my time on the conference circuit, I decided not to go to the AAA conference because frankly I am totally annoyed with the professional organization. I am usually quite proud to be or at least amused after I tell folks that I am am anthropologists (most react as if I had decided to embark on some real courageous path) but I am quite embarrassed about the association that is supposed to represent my interests and the profession at large.

The links on SM point to and flesh out the problems with AAA’s refusal to jump on an exciting opportunity to free up some knowledge but I want to just emphasize three of the most problematic parts of their decision:

1.The most offensive part is that in reality the proposed bill is quite conservative in so far as it only asks for what should already be (a) given. That is, if the government is using tax dollars to fund research, it has every right to demand the fruits of such scholarship is made available to tax payers. Right? Given the neoliberal moment we are in, in which the government is retrehcnhing on all sorts of supports, this bill is admirable and I am afraid that if it does not pass it can be easily used by conservatives to justify future cuts of such funds. And given the very uncontroversial nature of the bill, it is not surprising that so many of the social science and humanities associations did not protest the bill… Anthropology sticks out as a sore sore thumb in fact.

2. The AAAs deployed FUD tactics to justify their position saying that open access would jeopardize peer review… Sigh. That is just so off the mark and the AnthroSource steering committee letter addressed this point well.

3. Many anthropologist know first-hand how appalling access outside of Europe, US, Australia, Japan etc, can be, even for academics and thus, AAA’s lack of support for this is also implicitly sanctions the “North” “South” Division that have plagued the field and all of academia so long. And for a field that has often been very thoughtful about these power/knowledge dynamics, it is doubly even more stinging… Is there really such a strong disconnect between the association and discplinary ethical currents?