Unlocked: An Oral History of Haden’s Syndrome by John Scalzi Read Free Book Online

experienced lock in. I won’t bore you with the details of that. I will say it’s pretty much like being in solitary, every day, all the time, for the rest of your life. That should be enough to go on. I do remember one day while I was lying in the infirmary wing, where they had permanently put those of us locked in, a nurse was talking to one of the PAs and saying that she had heard that in the legislature there were some state representatives who objected to continuing medical services to those of us who were locked in. Said it was a waste of money and that in our case it was God meting out justice. I never intentionally killed anybody, but I would have gladly wrapped my hands around that asshole’s neck.
    One day I hear [Nebraska State Penitentiary Staff Doctor Hunter] Graves talking to someone. When you have nothing to do but lie there and hear other people talk, you get good at knowing the voices of the staff, and this was someone new. Graves told this person that I was likely the best candidate in the infirmary. I had no idea what that meant. Then this person started talking to me. She introduced herself as Dr. Constance Dennis, from the Department of Health and Human Services, and she wanted to know if I would volunteer for a medical procedure that would allow me to talk to people again and maybe even get me back on my feet. They would advance my parole date by a couple of decades for my participation. The only catch was that the procedure was highly experimental and I might die.
    Well, shit, I thought, I’m already as close to dead as I was going to get. Anything was better than this, including actual death. When they put me into that MRI to scan my brain to see my response, I was shouting “Yes!” so hard in my head that I think I almost gave myself a stroke.
    Kathryn Martinez, Associate Counsel, The Prison Freedom Coalition:
    We fought it. Of course we fought it. Approaching people imprisoned for life or something close to it and dangling parole in front of them in exchange for being medical experiments was deeply unethical medically and extortion besides. So we fought it, and so did the ACLU and the NAACP.
    And we were shut down every step of the judicial line, culminating with the absolutely disastrous
Hicks v. Copleland
ruling. Now in the United States you can completely disregard the 8th Amendment as long as you can say that prisoner participation in a quote-unquote medical trial is quote-unquote voluntary. As if prison itself isn’t a system of compulsory situations, one after the other. We set back the prisoners’ rights cause by a couple of decades. It’s a millstone around the neck of everyone who participated.
    And it’s a reminder that panic—in this case about Haden’s syndrome—means that justice gets compromised. The law is blind, but the people who administer it see what way the political winds are shifting all too well.
    Heng Chang:
    During the worst of the
Hicks v. Copleland
controversy I’d get phone calls in the middle of the night. Some of them were from people telling me that I was a monster for using prisoners, and then others telling me that if I didn’t pick their brother, or father, or whoever, to take part in the trials, they would come and burn down my house. It was a nerve-wracking time, not in the least because I had almost no say on who was chosen for the trials.
    I can sympathize with those who thought we were doing something monstrous with the prisoners. My wife has Japanese-American ancestry; her family tree has people in it who were interned at Tule Lake. I know mistakes can be made because people are scared. But at the same time, there were suddenly millions of Americans, and millions more around the world, trapped inside their bodies. In places where care wasn’t as advanced as it was in the developed world, third stage Haden’s patients were simply being left out to die, slowly starving to death. Even here in the US there were entire hospitals basically being used