In 2011 I set off with a camera to explore a mental asylum in Mexico run by its own patients. The place is just beyond the last junkyard on the curdled fringe of Juárez, the world’s most violent city. On one level these people shared common purpose in that they dressed each other, cleaned each other, fed each other. But then there were many other levels, many other worlds. The tragicomedy of Beckett was everywhere, I can’t go on, I’ll go on, while the infantile grotesqueness of Jarry’s Ubu Roi was never far away. The more I filmed, the less I understood and the more curious I became.
I met a man called Josué who was managing the asylum. Five years previously he’d lost his mind and the ability to walk but I found him in a reflective mood. He told me his dream. After two visits and many hours of material my editing was frustrated by a desire to present the mystery I’d encountered while needing a story to hang it on. Then Josué’s dream came true. His daughter in LA emailed me to ask what her father was doing in a mental asylum. She’d seen a trailer for the film I’d posted online. She hadn’t seen her father in 22 years and had been told he was dead. Two more visits and I managed to put Josué and his daughter together and filmed the reunion.
The film, titled Dead When I Got Here, is due to be finished later this year and we’ve launched a Kickstarter to help fund its completion.
Below is an exclusive scene for Boing Boing featuring Josué trying to reason with a psychopath, and an excerpt from my diary during the last shoot at the asylum.
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This is a really important long read that we all need to pay attention to. It concerns how we treat people with who are suffering from paranoid delusions — and how we treat people whose families worry that they are a threat to others. It concerns the relationships between doctors and the pharmaceutical industry. It concerns the ethics of clinical trials — the risks we run as we test potential treatments that could help many, or hurt a few, or both. If we want to reform mental health care, this needs to be part of the discussion.
In 2004, Dan Markingson committed suicide. The story behind that death is complicated and depressing. At the Molecules to Medicine blog, Judy Stone documents the whole thing in three must-read chapters. Many people find help in psychiatric drugs, and credit those drugs with making their lives better. (Full disclosure, I'm one of them. I have used Ritalin for several years. I am temporarily on an anti-depressant.) But we have to pay attention to how those drugs get to us. This isn't just about treating people. It's about the process that gets us there. Because, if that process is compromised, the treatments we get won't be as effective and lives will be lost along the way.
Markingson began to show signs of paranoia and delusions in 2003, believing that he needed to murder his mother. He was committed to Fairview Hospital involuntarily after being evaluated by Dr. Stephen Olson, of the University of Minnesota. He was subsequently enrolled on a clinical trial of antipsychotic drugs—despite protests from his mother. This study was a comparison of atypical antipsychotics for the treatment of first episodes of schizophrenia (aka the CAFÉ study), sponsored by AstraZeneca. The study’s structure was that of a Phase 4 randomized, double-blind trial comparing the effectiveness of three different atypical antipsychotic drugs: Zyprexa (olanzapine), Risperdal (risperidone) and Seroquel (quetiapine), with each patient to be treated for a year.
After about two weeks on study treatment in the hospital, Markingson was discharged to a halfway house—again over his mother’s objections. Over the coming months, Dan’s mother, Mary Weiss, continued to express concerns about her son’s deterioration, even asking if her son might have to kill himself before anyone else would take notice…then, in fact, her son violently committed suicide on May 7, 2004, mutilating himself with a box cutter. The University of Minnesota and their IRB have maintained that the study was conducted appropriately and that they have no responsibility for Dan’s death. Dan’s mother and bioethicist Carl Elliott believe otherwise.
We’ll explore some of the major issues of contention in this case over several posts, as illustrative of basic clinical research principles, including adequacy of informed consent, IRB oversight, conflicts of interest, and coercion, including threats to a bioethicist whistleblower.
Read the second part: How clinical trials should be done and how they were done in this case.
Read the third part: Conflicts of interest between the researchers and the pharmaceutical industry.
"My Favorite Museum Exhibit" is a series of posts aimed at giving BoingBoing readers a chance to show off their favorite exhibits and specimens, preferably from museums that might go overlooked in the tourism pantheon. I'll be featuring posts in this series all week. Want to see them all? Check out the archive post. I'll update the full list there every morning.
Daniel Schneider wrote in to tell me about a series of exhibits at the Ohio Historical Society that force people to confront the uncomfortable bits of history.
The Ohio Historical Society had an exhibit titled "Controversy" last year. They included items form Ohio's past that were objects of controversy of one time or another. The exhibit included KKK robes and Ohio's electric chair & control panel. 2 of the stranger items were an 1860's condom (found in an accountants notebook?!!?) and a adult crib bed\prison from an asylum in Cincinnati. The are having a new Controversy exhibit this year.
It feels weird/wrong to say that exhibits like this are fascinating, but there's definitely a lot of value in bringing modern museum goers face-to-face with things we might prefer to collectively forget.
The condom, obviously, is pictured above. It's worth noting that, at this point in history, condoms were meant to be reusable. Daniel also sent me a photo of the "crib-bed", which is really more of a cage, but it is disturbing in a way the condom shot is not and I'm choosing to put it under a cut here.
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