Last Thursday at the University of Toronto, for the inaugural Olivieri Lecture on Medical Ethics, sponsored by the Canadian Association of University Teachers, I spoke about the death of Dan Markingson. And for a rare moment, it became possible to imagine that things might actually change. There was so much genuine outrage in the lecture hall, so many people crowding around afterwards to ask how they could help, and so many supporters saying thanks for what we are trying to do. Here at the University of Minnesota, it is easy to get demoralized. Most days it feels as if we are fighting an unwinnable war. If nothing else, events like the Olivieri Lecture provide a powerful psychological lift. For a few days afterwards, it is possible to get a good night’s sleep again.
My only regret is that Mike Howard and Mary Weiss could not be there. I honestly don’t know how they survive the kind of psychological torture they have been forced to endure. Imagine fighting the same battle every day for nearly ten years: digging through study records, filing countless complaints, calling legislators and lawyers, writing letters, organizing petitions, talking to other families who have been mistreated or abused, contacting reporter after reporter trying to gather public attention for the cause, and at the end of it all, getting nothing but false promises and bureaucratic stonewalling. It doesn’t surprise me that Mary has had three serious strokes. What surprises me is that Mike has not had a stroke too.
I just wish it were possible for Mike and Mary to feel some of this support firsthand, in between all the physical therapy sessions and the anxiety-filled nights and the panicked trips to the emergency room. Emails and Facebook messages are better than nothing, but they are no substitute for genuine face-to-fact contact. In Toronto, I got two days of encouragement and solidarity. Mary and Mike didn't, and that doesn't feel fair. No one should have to fight this kind of battle alone.