Wednesday, May 6, 2015

Power concedes nothing without a demand

One year ago, I stood with a committed crowd of activists at a vigil for Dan Markingson on the tenth anniversary of his death.  Shortly afterwards, we interrupted a meeting of the Board of Regents and presented funeral flowers to President Eric Kaler and Board Chair Richard Beeson.  

Tomorrow the Board of Regents will sponsor a forum on human subjects research.  I will be there, and I hope many others will be there as well.  Below are the comments I made at the vigil last year.

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I grew up in the 1960s and 70s in the South. If you look back at the research scandals of that time, there’s a common thread that unites all of them. And that common thread is exploitation. With the Tuskegee syphilis studies, it was exploitation of poor black men in Alabama. With Willowbrook, it was disabled children. With Holmesburg, it was prisoners. In every case, what you had was people with power taking advantage of people with no power. It’s a simple formula. That’s what exploitation is all about. Using the powerless for your own purposes.

There are a lot of ways to exploit a person with a mental illness. You can lock them up. You can medicate them against their will. You can threaten them with involuntary commitment. You can tell them that the way to avoid all this trouble is to sign up for your research study. That’s what happened to Dan Markingson. A psychotic young man who thought demons were torturing him was signed up for a drug industry study over the explicit objections of his mother. And that study killed him.

To the University of Minnesota, Dan was not a patient. He was a commodity. To be exact: he was a commodity valued at $15, 637, payable from AstraZeneca.

You might say: look, this death was a mistake. Sometimes doctors make mistakes. I don’t think that’s what happened here. And what is indisputably not a mistake is the way that Mary Weiss has been bullied and intimidated by University of Minnesota attorneys during the ten years since her son died. What kind of university would file a legal action against a mother whose son had killed himself in a university drug study? What kind of university would demand $57,000 from a mother whose son had been victimized by its own researchers? I’ll tell you what kind of university: ours. This is what has been done by the attorneys in this building, in our name. And it’s a disgrace.

Back in the early 90s, I worked in South Africa. I worked at a medical school in Durban for African and Indian medical students. And if you lived in South Africa back then you knew that the government was ruthless and repressive. But on the surface, it looked like a democratic society. It had courts; it had laws; it had elections. Of course, it was just an elaborate stage set. If you weren’t white, you didn’t stand a chance, because the entire system was designed to keep the boot on your neck. And yet somehow, the apartheid government needed to pretend that it was a functioning democracy. The props and the costumes had to look real.

That's what this university feels like to me. On the outside, it looks like a functioning university. We have all the offices and committees and procedures that you’d expect a university to have. These things are supposed to be protecting patients. But it’s just a façade. Instead, they exist to protect the university. You ask for records; they say, “We lost those records.” You say, “There’s ethical abuse here;” they say, “We’re not the ethics police.” You file a complaint; they turn around and file a complaint against you. I’ve been trying to get research death and injury records from the General Counsel’s office for nearly seven months now, and they have still not budged. You want to know how research oversight at this university works? This is how it works. When the nearly decapitated corpse of Dan Markingson was found in a bloody bathroom in the middle of the night ten years ago, this university didn’t even think it was worth investigating.

In the documentary Eyes on the Prize, there’s an interview with Reverend Fred Shuttlesworth about the civil rights movement in Alabama. Shuttlesworth said, We thought we could just shame America. We thought we could just say, look at all your broken promises and the way that you’re treating black folks, and say, you ought to be ashamed of yourself. But that strategy doesn’t work, he said. You can’t shame segregationists. Rattlesnakes don't commit suicide. Ball teams don't strike themselves out. You gotta put 'em out.

 And when I heard that, I said, Amen. But the fact is, you can shame segregationists. Believe me, I’m a white guy from South Carolina. I know. And we can shame the people sitting in that board room upstairs. They don’t want to know we’re here. They don’t want to know about Dan Markingson. They don’t want to know whether there have been other Dan Markingsons. They don’t want to know whether there are others who have been coerced and threatened and who have died. What we have to do it make sure that they can’t keep looking away. Separately, we can’t do that. But together, we can.

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