January 27, 2008

Revoking a license

Category: F/OSS,IP Law,Politics — Biella @ 12:27 pm

Seems not so kosher, in a legal sense.

January 26, 2008

Spa Audaciousness

Category: New York — Biella @ 8:59 am

New York is a pretty crazy city but who knew there was the room for this type of roomy spa crazinesss?. All I gotta say is check out the different, (some very high-tech), sauna rooms. I gotta check it out. Soon.

Update: A small crew went and it is, I think, the best 30 bucks one can spend in the greater New York area. The saunas, baths, and wrist watch tech-keys were nothing short of great, as was eating Korean food after a series of saunas. I can’t wait to go back during the week when I am sure it will be a little more calm.

The Atlantic

Category: Books/Articles,Tech,Wholesome — Biella @ 4:46 am

Nice to see that The Atlantic is now free.

January 25, 2008

Berkman Center no longer seems to be hosting dvd-discuss

Category: Berkman,F/OSS,Tech — Biella @ 3:14 pm

Before I post the longer version…

I am looking for a full copy of the dvd-discuss archives. Does anyone have it??

The Berkman Center, who had been archiving them is no longer doing so!! (hard to believe), even though they have a broken link from this page.

There are some archives I have found but they seem incomplete.

If you have earlier mailing list archives, please please let me know!

update: So thanks to some help I have the earlier archives on the wayback machine but they should be archived on the same spot, no?

January 24, 2008

Pugarrific screen saver

Category: Humor,Tech — Biella @ 2:29 pm

There are a lot of Pugs in NYC. Really, a lot. They are the right size and since they have tubing issues and thus breathing issues, NYers don’t feel bad that they have subject their dogs to a more or less sedentary life minus small jaunts in the park, unless of course, you send you dog to doggie day camp. Whatever the case, there are many. SO New Yorkers with pugs, a present . Use it at work and then it is just like having your pug with you.

Spread the beef

Anyone who knows me, even remotely, knows that I have a huge beef with the American health insurance industry, which was greatly magnified after my own unpleasant run-ins with them over the course of the last two years. But of course while the insurance industry is certainly a ruthless predator and thus deserving much of the blame, they are not the sole culprit in sustaining what is a lousy health care system for Americans. A key player, I think, are American doctors, and I would now like to spread that beef patty of disgust to them, especially since they are now the one’s giving me problems dealing with the final portion of BCBS bill. The story is indicative of lager issues and problems that center on the problematic silence “spoken” by doctors.

To make a long story short, BCBS of NJ was not ponying up some serious cash (at least for me) for 2 mole surgeries because they were claiming it was pre-existing condition. After having the public relations director email me (thanks to that post) and a lot of research and letters etc, it was more or less resolved. Soon after they overturned the pre-existing “bs” (and I am not talking blue shield here), they promptly started to pay all sorts of bills (and I even got money back from doctors I had paid).

But there is one pesky $1600 bill that lingers like a bad smell and the question is why? I am not entirely sure but my interactions with my ex-dermatologists, Affilated Dermatology in NJ, I think reveal some important lessons as to why and how the medical establishment are complicit.

Basically, BCBS is telling me that it looks like they have been double billed because the cost is exactly the same for two procedures that are also exactly the same. I explained that I had did indeed have two surgeries on my scalp (they were really close to each other) and they let me know that the provider needs to call back and send information that clearly shows there were two surgeries. This actually seems somewhat legitimate and potential mistake (and it is not like medical billing is known for their lack of mistakes and integrity either).

So I call Affiliated Dermatology and while I would say they have been patient, in so far as patiently waiting for my money, they have been completely unhelpful in any meaningful sense to help me getting this resolved. Now, given how difficult it is to deal with the health insurance industry, I understand they can’t provide fine-tuned, fine-grained personal attention. The health insurance industry engages in some real hefty politics of foot dragging and well, there are so many foot soldiers at doctor’s offices to keep up with the web of knots that the health insurance constantly entangles us in. With that caveat in place, they can however do two things:

1. Inform you that you can contact the Department of Housing and Insurance and start some sort of formal complain process.

2. Give you some small clue as to whether the doctor has sent any of the additional requested information (they are usually mum, or enigmatic, or totally confusing with regards to that) so you know what the heck is going on.

So a few days ago when I was speaking with health insurance person at the dermatology office, she claimed there was nothing else she could do about this last bill. Every time she calls BCBS, she claims that they claim it is a problem with being a pre-existing condition, and I was like “how can that be when that has been cleared and every other bill, and there were many, has been paid?” And then she also said that there has never been this confusion before where 2 surgeries look like one, blah blah and blah (and in retrospect, I forgot to tell her that my double surgery, according to the doc, was in fact highly unusual, because they would usually do them on two separate days because they were so close to each other. They made an exception because I was literally on my way to Canada and begged them to do so but anyway).

Ok, so there I was bickering with this woman and feeling stuck between a rock and a hard place. Finally I let her know, point blank, that they have been remarkably patient with the billing but totally unhelpful in, well, helping me out. I let her know that they should let people like me know, for example, that they can file a formal complaint against the health insurance company and this would at least get the ball rolling. I then let her know that I had no other option but to file another complaint with the Dept of Banking and Insurance and they would just have to wait for that, at which point, she all of a sudden became more helpful. She suggested that we can do a three way call to resolve this. Well there you go. Why did it take a heated 15 minute conversation topped with a threat to get what I think actually makes perfect sense? Get the 3 parties involved on the phone with each other so as to all get on the same damn page about what needs to be done (not sure if BCBS will agree to this… at which point I will pester the public relations director again and in the end, I think this was resolved because he was sick of my emails).

Now, why why why why why why are doctors and their staff so unhelpful? I think that main answer is they are overwhelmed and don’t have the staff to deal with the enormous amount of foot dragging and coy tactics deployed by the health insurance. That said, there are 2 things worth mentioning that I think don’t paint a very flattering picture of many American doctors.

If you pay attention to your medical bills (and you always should), it is immediately evident that the doctors and hospitals get paid LESS, sometimes a lot less, if the health insurance company foots the bill because of the pre-arranged negotiated rate. So there is an actual incentive on that side of things to get paid via the consumer as opposed to the health insurance company. Now. I am sure that there are health care economic studies and reports justifying this strangeness but that does not make it right either. There is a clear incentive in place to get your green dollars, as opposed to those of the insurance company.

Second and this is a much bigger issue, is that I think that for any meaningful change to happen, we need the active support of a large percentage of the medical community, especially doctors. If they are mum, or actively opposed to health care reform (as was the case when the AMA helped derail the Clinton effort at instituting universal health care in the 1990s), well then it becomes all that much harder for the general populace and the politicians to initiate real change. Doctors are the ones, after all, with the moral weight and capacity to make claims that can STICK. If they are saying this system negatively impacts how we care for the ill, it is a system that is is immoral, well, one should listen to them as they are the ones, after all, who dedicated their LIFE to healing the ill, right? Yes? No? Maybe?

So their silence is nothing short of grave. The good news is that it seems like more doctors are on board than ever before clamoring for change in the right direction, but we need a lot more to come aboard…

A number of years ago, I wanted to write a controversial and critical article that claimed hackers are more ethical than doctors. I thought it would be fun to claim that those who are usually seen as ethical (doctors) are less so than those that are usually portrayed as bad-as* unethical tricksters.

Some people were offended by this because doctors deal with the great burden of life, death, sickness, and thus suffering while geeks and hackers are “just” geeking out on their computers. True. But at least a cadre of hackers have sustained a social realm and a real ethics–free software–in order to guarantee their own autonomy and also create the conditions for what is right for software.

Doctors, on the other hand, do not carry the torch of ethics as they should. While individually I am sure they deal with a oodles of difficult ethical choices and decisions, it is about time they they turn as a collective to the larger structural conditions that seriously cause a lot of harm to millions of Americans, especially the droves of uninsured. They have the moral weight to do something about it and it is about time they carry their weight in this battle and take some burden of suffering off others.

January 19, 2008

Classic in Internet Studies

Category: Academic,Books/Articles,IP Law,Teaching — Biella @ 10:40 am

One might think that it is too early to declare the existence of a “classic” work on the Internet given how the Internet as a widely accessible communications networks is barely out of its pre-teen years, But if there is one book that I would say is a classic, it’s Julian Dibbell’s My Tiny Life. There were plans underway to release it under a libre license but after I ran into Julian at the AAAs in November, I got the scoop that things had come to a screeching halt.

So a few days ago I was surprised to find in my inbox, this nicely crafted announcement that My Tiny Life is more or less (more more than less) free as a free bird. This is good news and his story about the trials and tribulations of getting My Tiny Life out of the noose of copyright, is an interesting one, involving among other things, outsourced Indian Labor. Who knew.

And while I am on the topic, I meant to write about who, among the many authors I assigned this last fall, took the cake among students as their favorite book/article. Somewhat, unsurprisingly, Dibbell’s more recent Play Money was the champion. Most of the comments were relayed in class but here is one of the more amusing comments indicating the love:

Reading Julian Dibbell’s Real Money, Or How I quit My Day Job and Made Millions Trading Virtual Loot was exceedingly more interesting than I expected.

And then just yesterday, another student wrote me an email telling me he read and re-read the book over his holiday break and wants to get Dibbell inivited to NYU to speak (which would be great, though I admittedly have no idea how to make that happen given my recent arrival here). But clearly, there is another classic in the making.

Thankfully students liked many other readings and I think there were two other clear winners: Carl Elliot’s Better than Well , Michael Warner’s The Trouble with Normal. and Michael Sandel’s The Case against Perfection. This is of course no surprise to me as I picked these books because I knew they would teach themselves.

January 13, 2008

On Losing a Mother, on Losing Memories

Category: Alzheimers — Biella @ 6:07 am

For the last four years, I have left my life and home to return to my mother’s far more precarious and fragile life in Puerto Rico. I do so to visit. But I also do so to give her caretaker, Milagro, a much needed break. I returned on December 18th and found my mother nearly in the same state as she was in October. Far worse than a year ago, but she still struck me as my mother, if nothing else because she knew I was her daughter.

Over the course of a week, all of that changed. After a series of howling fits, by the end of my first week there, she no longer knew she was my mother. While I knew this would eventually happen, I was still caught off guard. You see, prior to my arrival, and since my last visit in late October, she asked me on the phone, and my sister and Milagro in PR, *nearly everyday,* when I was coming back. So even though she asked when her daughter, who she knew lived and worked in the city of New York, was coming back over and over again for 8 weeks, this seemingly hard-wired thought quickly vaporized thanks to what is a disease of the brain, but what strikes experientially as a cruel disease of the soul and personality.

So while 2007 was overall a pretty good year, it is also the year when in certain respects my mother died, at least for me in so far she has morphed into someone remarkably different from the person I once knew. Now she only remembers small scraps of her life. She knows she is from Russia, she knows that she lives in the “Casa de Vera” (which she thinks is her bed), she knows she loves the dog, she knows that she had parents (and she would like to return to them but does not know where they are), she knows she has a good friend who is a painter (I think she had a massive crush on him if she still remembers him and not me ;-) but otherwise, everything is so twisted, so jumbled or so gone, it is beyond stunning. She certainly knew I was around and helping for she got upset when she knew I was leaving, often bursting in tears, asking me to take her to New York. But she just knew me as Gabriella from Nueva York who brought “her novio bueno to PR” and not as anyone else.

It is certainly not easy to see this, to experience it day in and out but it is what it is and there is no running from it. Logistically it is also beyond hard to take care of my mom. To get her to eat, to calm down after one of her morning fits (she always, always, always had a raging fit in the morning, the afternoon and evenings being far more calm periods), to convince her to wear her dentures (which is the only remedy to stop her from spitting all over the place), to dress her, to deal with her in the middle of the night, often twice, are all extraordinarily challenging. Very quickly, your waking hours fill up with seemingly endless tasks and this I guess is, in some respects, a hidden blessing; there is just a lot less time to ruminate over how all of this, frankly, sucks. It is only later, late at night, early in the morning, or on the plane ride home where the darkness of her life would set deeply into my own.

It may be obvious why this state and experience is tough but there are two parts that I find particularly rough. If my mother’s state is one of near total chaos and entropy, there is one thing that is utterly clear. She knows she is suffering and she wants out. On particularly bad days, she would mutter or sometimes yell loudly that she wants to die and would ask for the medicine that would accomplish this. She would even sometimes call me “mala” for not giving her this medicine. It is certainly not the case that everyone with Alzheimers goes through what my mother does. Apparently, some experience the illness quietly and peacefully. This is so not the case for my mother, who lived a particularly hard yet vibrant life. Donning a difficult personality, she lived lived as fully as she could and it is clear that as life leaves her, she would rather not be around to experience what is a cruel exorcism of self. Thankfully, she is not constantly or not even mostly in a suicidal state. I think she at times forgets how lousy she feels and rather enjoys the rather limited life she has. And at this point, I just hope that she continues to have calm or even happy moments.

The second surprise concerns my own memories. My mother has had this rare form of Alzheimers, Posterior Cortical Atrophy, for at least 6, possible 7 years now, though we only received the official diagnosis 2003, which is the year when when I first started to write the occasional post about my experiences with her. In 2003 and 2004, she was pretty functionally in tact and it has only been the last 2.5 years when the persistent decline has set in, whittling her capacities and memories to what seems to be a bare minimum. But because her presence and reality is nothing short of totally enveloping and drowning, I am starting to lose my own memory of my mother prior to her illness. If Alzheimers robs people of their memories, I have come to realize, that if you are not careful, it is a thief that can also rob your own memories. I think it is for this reason that I have become so attached to my mother’s stuff—her furniture, her paintings—some of which I have taken back with me. They are material vehicles that transport me back to the past when my mother was in a different state and place. Now it is clear that if the challenge is to deal with the emotional toll this illness causes, it as much summoning the will and performing the labor to retain and recall my older memories of her.