Is There A Doctor In The House?

Note: updated below
I NEED HELP. I have an orange-sized fibroid in my cervix, among other problems. The local hospital system is dysfunctional and corrupt – doctors don’t communicate with each other, or with patients (it is, however, one of the most PROFITABLE systems in the country! Isn’t that nice). My so-called “primary care physician” hasn’t seen me in 3 years, though not for lack of trying on my part. I visited the emergency room in great pain last year and since then have gotten bumped from specialist to specialist, and then dropped – it took 4 months to get a referral from the useless rheumatologist for the gynecologist, because someone somewhere dropped the ball and didn’t feel like it was important. Surgery that was supposed to happen this month or next, now won’t even start to be scheduled until July. Maybe. Every time Carle says they’ll do something by a certain time, they don’t – like I said, they took 4 months for a simple referral (and I had to get on their case to do anything about it at all). So even if I absolutely knew surgery was what I needed, there is an enormous trust problem at this point. Do I want these corrupt clowns cutting me?

A doctor in my family recommended someone at Loyola Medical Center who looked promising. So I called, and while they accept Medicaid, they don’t accept Medicaid managed by Meridian, which is what I have. So I called Illinois Medicaid and asked if I could switch to Molina, and they said no, I’m locked in until April of next year. So I called Meridian, who put me on hold for half an hour and then gave me numbers of nearby medical establishments which aren’t Carle. One of them was a disconnected number, the other, Kirby Med Center in Monticello, has no gynecologists at all. I called an affiliated gynecologist in Peoria, but his office is booked until at least July – and that would just be for an initial appointment.

What I REALLY want is a doctor that actually pays attention and can help me figure out what I should do. I won’t get that through my local med system. I probably won’t get that anywhere. But here’s my last-ditch effort before I resign myself to a life of pain and permanent celibacy (I can’t have sex without getting violently ill; celibacy is how I’ve been managing at all):

Are there any gynecologists among my fans? Any? I will travel to your state. I just want someone who will actually pay attention to my case. I am desperate.

Update 5-18: Due to help found through my cry of despair here & on fecebook, I have an appointment Monday with a gynecologist at SIU Med Center in Springfield IL. I was advised that teaching hospitals are eager for patients like me, and so far that seems to be the case. I called this morning, they were very helpful, and called back within 4 hours with said expedited consult appointment.

Then all I had to do was get my records released from Carle. Carle doesn’t accept emails for this (“they take too long,” they said on the phone). You have to visit their new vortex-of-evil administrative hell-plex on Staley road at Curtis, on the outside of town. Fortunately, SpecialManFriend(tm) was kind enough to take me there. I filled out the form, talked to the clerk, and came back after lunch. “Here are your records!” they said, handing me a big envelope. I almost walked off with it, but then decided to read through them first. Good thing, too – they’d neglected the most important, recent, and pertinent records of my MRI and ultrasound. They also neglected to include images, which I specifically requested. I politely asked for these things and they said, “oh, sorry, we’ll print those out now,” and “oh, ok, we’ll burn you a disc.” I’d be disgusted but I’m feeling too hopeful about getting a new doctor in a completely new, totally non-Carle system.


Dvorak Diary #1: Airport

On a recent trip to Trivandrum, India, I decided to try learning to touch-type in Dvorak (after decades of hunt-and-peck in QWERTY). Here I share some excerpts of my “Dvorak Diary”.

Dubai Airport


December Twenty-Fifth, Two Thousand Fourteen….

The airport here has two levels. Lower is a huge confusing mall like Heathrow; upper is one huge business class lounge with its own gates. Lower is a dystopian capitalist nightmare; powerless citizens oppressed by armed guards are blasted with ‘luxury’ images and stores. The more oppressed, powerless, and confused the human, the more vulnerable to advertising. The violence behind capitalism is apparent at airports. Armed guards at the periphery, armed guards at every step, and at the center: shopping. But the business class lounge is ad-free and store-free. ‘Luxury’ goods aren’t for the rich and powerful, they’re for the disempowered middle class. They are the only way to gain a sense of power where all other power has been stripped away.

I started typing that at the Dubai airport but finished it here on the plane. That’s how slow a typist I am.


Youtube’s Content ID abuse is out of control

Today I received not one but two fraudulent copyright claims on my Free and Copyleft work (instances of Sita Sings the Blues and All Creative Work is Derivative). I’ve also received fraudulent claims on Copying Is Not Theft, as have others who have re-posted it and translations.

This is why I’m looking into Chinese video hosting. When China starts looking like a Free Speech haven, something is really wrong with the United States.



Adapted from a talk and slide show I presented at the Open Knowledge Conference in Berlin on July 1, 2011. –NP

Why are the Freedoms guaranteed for Free Software not guaranteed for Free Culture?

Free software is a matter of the users’ freedom to run, copy, distribute, study, change and improve the software. More precisely, it means that the program’s users have the four essential freedoms:

  • The freedom to run the program, for any purpose (freedom 0).
  • The freedom to study how the program works, and change it to make it do what you wish (freedom 1). Access to the source code is a precondition for this.
  • The freedom to redistribute copies so you can help your neighbor (freedom 2).
  • The freedom to distribute copies of your modified versions to others (freedom 3). By doing this you can give the whole community a chance to benefit from your changes. Access to the source code is a precondition for this.

The Free Software Definition

These are the Four Freedoms of Free Software. They are foundational principles, and they are exactly right. They have served and continue to serve the Free Software Movement very well. They place the user’s freedom ahead of all other concerns. Free Software is a principled movement, but Free Culture is not – at least not so far. Why?

1. The No Derivatives (-ND) Restriction

If you tinker with software, you can improve it. You can also break it or make it worse, but the Freedom to Tinker is one of the foundational 4 Freedoms of Free Software. Your software may also be used for purposes you don’t like, used by “bad people,” or even used against you; the Four Freedoms wisely counsel us to GET OVER IT.
Unfortunately, The Free Software Foundation does not extend “Freedom to Tinker” to Culture:

Cultural works released by the Free Software Foundation come with “No Derivatives” restrictions. They rationalize it here:

Works that express someone’s opinion—memoirs, editorials, and so on—serve a fundamentally different purpose than works for practical use like software and documentation. Because of this, we expect them to provide recipients with a different set of permissions (notice how users are now called “recipients,” and their Freedoms are now called “permissions” –NP): just the permission to copy and distribute the work verbatim. (link)

The problem with this is that it is dead wrong. You do not know what purposes your works might serve others. You do not know how works might be found “practical” by others. To claim to understand the limits of “utility” of cultural works betrays an irrational bias toward software and against all other creative work. It is anti-Art, valuing software above the rest of culture. It says coders alone are entitled to Freedom, but everyone else can suck it. Use of -ND restrictions is an unjustifiable infringement on the freedom of others.

For example, here I have violated the Free Software Foundation’s No-Derivatives license:

The Four Freedoms of Free Culture:

1. The freedom to run, view, hear, read, play, perform, or otherwise attend to the Work;
2. The freedom to study, analyze, and dissect copies of the Work, and adapt it to your needs;
3. The freedom to redistribute copies so you can help your neighbor;
4. The freedom to distribute copies of your modified versions to others. By doing this you can give the whole community a chance to benefit from your changes.

Without permission, I’ve created a derivative work: the Four Freedoms of Free Culture. Although I violated FSF’s No-Derivatives license, they violated Freedoms # 2 and 4, so we’re even.

2. The Non-Commercial (-NC) Restriction

The Freedom to Distribute Free Software is essential to its success. It has given rise to many for-profit businesses that benefit the larger community.




Red Hat, Canonical – would the world be better if such companies were forbidden? Would Free Software benefit from a ban on those businesses?

Yet the Cultural ecosystem is stunted by the prevalence of Non-Commercial restrictions. These maintain commercial monopolies around works, and  – especially for vocational artists like me – are functionally as restrictive as unmodified copyright. Yet they are widely  mislabeled “Free Culture,” or even “Copyleft.”

Which of these things does not belong?

This is a still from the mostly excellent and popular documentary RIP:a Remix Manifesto. This film is many peoples’ introduction to the term “Free Culture” and “Copyleft.” But as you can see, the Non-Commercial restriction is lumped in with actual Free license terms.

See that dollar sign with the slash in it? That means Non-Commercial restrictions, which are most definitely NOT Copyleft. (I’ve posted about Creative Commons’ branding confusion before, but it’s only gotten worse since then.)

NC stands for Not Copyleft

This film is itself licensed under unFree Non-Commercial restrictions. As an artist and filmmaker, I have found confusion is rampant among my creative colleagues. Some filmmakers are beginning to think the term “Free Culture” is cool, but they still want to restrict others’ freedom and impose commercial monopolies on their works.

This doesn’t help either

The book Free Culture by Lawrence Lessig its itself not Free culure, but it is widely looked up to. It sets an unfortunate and confusing example with its Non-Commercial license. It illustrates the absence of guiding principles in the Free Culture movement.

I have spoken to many artists who insist there’s “no real difference” between Non-Commercial licenses and Free alternatives. Yet these differences are well known and unacceptable in Free Software, for good reason.
Calling  Non-Commercial restrictions “Free Culture” neuters what could be an effective movement, if it only had principles.

So what do I want?
I want a PRINCIPLED Free Culture Movement.

I want Free Software people to take Culture seriously. I want a Free Culture movement guided by principles of Freedom, just as the Free Software movement is guided by principles of Freedom. I want a name I can use that means something – the phrase “Free Culture” is increasingly meaningless, as it is often applied to unFree practices, and is also the name of a famous book that is itself encumbered with Non-Commercial restrictions.

I want a Free Culture ecosystem that allows artists to make money. I want anyone to be able to accept money for their work of remixing and building on Culture – just as a trucker can accept money for driving on a road. I want money to be among the many incentives to participate in building culture. Without the freedoms to Tinker and Redistribute without restriction, there is little incentive to build on  and improve cultural works. There is little reward to help your neighbor, when you are guaranteed to lose money doing so. “Free Culture” with non-Commercial restrictions will remain a hobby for those with a surplus of time and labor, and those who only accept money from monopolists.

I want commerce without monopolies. I want people to understand the difference.

I want a Free Culture ecosystem that includes equivalents of  businesses like Red Hat and Canonical. I want cultural businesses that give back to their communities, that work with their customers instead of against them. Only if we refuse to place Non-Commercial and No-Derivatives restrictions on our works will a robust Free Culture ecosystem be able to emerge.

I want the Free Software community – those who currently best understand the Four Freedoms – to champion the rest of Culture, not just Software. I want Freedom for All.