The third group—well. In one sense the people in it didn’t have much to lose either. But they were still problematic, to say the least.
Chris Clarke, inmate, Nebraska State Penitentiary:
I was in prison because a couple of teenagers got into the drug lab me and my step-father Bill had in a tool shed on our property. I think they heard from someone who bought from us that we kept our inventory there. We didn’t—once we cooked it, we moved it. But they broke in, started looking around and we think accidentally started a fire. The shed went up, taking them with it. Me and Bill were charged with two counts of manslaughter and a whole bunch of drug-related charges, and were found guilty. Bill died of a heart attack before he could be sentenced, and I think the judge took it out on me. I got a total of eighty-five years, and I would have to serve fifty before I could get parole. I was twenty-two when I went in. It was life sentence on the sly.
You would think it would have been hard for Haden’s to get into a prison, but no, we got it just like everyone else. We joked that someone brought it in after a conjugal visit, but it’s obviously more likely that a couple of the guards brought it in from the outside world. Within a couple of weeks it seemed like half the house was sick with it. The prison only has one doctor on staff, and then some PAs and nurses. They were swamped immediately and not a lot of help was coming in. The rest of the world had it too, and helping a bunch of murderers and rapists was low on the list of everyone else’s priorities.
I think I was one of about a dozen inmates who 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 as storerooms for the locked in. It was an immense humanitarian crisis, on a global scale.
I don’t know. Maybe we were wrong to enlist prisoners as trial subjects. It’s something I don’t have a good answer for, and yes, sometimes it still keeps me up at night. But on the other hand we had workable, functional neural networks, from the moment I sat up in bed to the moment we switched on the first Haden patient, in eighteen months. That is a miracle. It really is.
Kathryn Martinez:
About a third of the prisoners recruited for the trials died or suffered moderate to significant brain damage. Or I should say, the government only in the last five years released the data which says a third of the prisoner participants died or suffered brain damage. We have reason to believe those numbers are, shall we say, conservative.
Chris Clarke:
Well, I didn’t die, anyway. Though I had to wait until that Supreme Court ruling came down to get to participate in the trials. I was one of the second wave of test subjects. Since I heard that a lot of the first wave died or got brain damage, I don’t suppose I should complain.
So, the way it worked is that I spent a lot of time with my head in a bunch of machines that made detailed scans of my brain. MRIs, X-rays to see blood vessels that had dye in them, that sort of thing. That took months, which didn’t make sense to me. I’m not Stephen Hawking. There’s not that much brain to see.
Finally they decided they knew as much about my brain as they were going to find out without actually looking at it, so they took off the top part of my skull so they could observe it directly. When they did that they took a clear, sterile piece of plastic and put it where the top of my skull used to be, so they could see inside whenever they wanted. Then they took the part of my skull they sawed off and tucked it into my stomach area, so it would stay alive for when they wanted to attach it back on to my head. I could feel the thing when it was down there. It wasn’t a very good feeling.
Then they decided they’d seen enough and put the top of my skull back on, after they placed the neural network in my head. They told me that the network had tendrils that would bury themselves in my brain but that I shouldn’t be able to feel them, so I shouldn’t worry about them. That wasn’t exactly a lie. I couldn’t feel the tendrils as they dug into my brain, but every once in a while it was like one of them would hit something, and I would get a huge rush of feeling or sensation. One time my field of vision went entirely green for like an hour, and another time I suddenly started smelling oranges. Another time I had about a minute where it felt like someone put a branding iron straight up my backside. It didn’t last very long but when you’re feeling something like that, time stretches out.