Unlocked: An Oral History of Haden's Syndrome Read online

  I was just starting at the ACLU when we got the first queries from Hadens about these incidents where they were being made to give up their seats to able-bodied people, and there were even a couple of municipalities that were passing ordinances to the effect that people with personal transports were, in a sense, second-class citizens.

  You would think that would be an open and shut case with regard to the Americans with Disabilities Act, but there some wrinkles we had to consider. For example, someone with a personal transport who goes to a restaurant isn’t going to eat there—their body is somewhere else, being fed something else. In effect that person is a free rider, taking up space and, some shops and restaurants argued, costing them money. They argued they had a right to ask people in personal transports to free up space for paying customers.

  For another thing, if the personal transport is made to stand, is the person controlling the personal transport actually inconvenienced? They aren’t being physically inconvenienced, because their body isn’t there. Having the personal transport stand won’t tire out the person controlling it. The argument could be made—and was—that asking personal transports to stand was no more inconveniencing to them than requiring able-bodied people to wear shoes. You could argue it’s humiliating to make someone stand when the rest of their party is sitting, but bars and coffee shops could point to groups of able-bodied people crowded around a single table, some standing and some sitting, and say that none of them were being humiliated. And so on.

  In one sense these seem like trivial things to be worrying about or to take to court. But they were actually hugely important. Almost overnight the world had developed what really was a new nation—a group of people whose commonality of experience was unlike anything anyone had ever experienced before. There were roughly the same number of Hadens in the US as there were religious Jews. More than the number of Muslims. They experience the world in a unique way, and because of how they present to the world—either in personal transports or as online avatars—they will experience things that no other people experience in quite the same way, including violations of their rights. We and other rights organizations had an opportunity that we hadn’t had before, to trim off discrimination before it developed. I think in the end we were more successful than we expected, but less successful than we’d hoped.

  Terrell Wales:

  When I was a kid I watched a documentary about the movie Planet of the Apes. The first one, with Charlton Heston. They were talking about how they would make up all the extras as various types of apes, like chimps and gorillas and orangutans, and then the extras would go to lunch and they would segregate. All the people made up like gorillas would sit with other gorillas, all the chimps would sit with chimps.

  It started being like that with other Hadens. Whoever you were before, you started being this other person too. Someone who none of your other friends could imagine being. It wasn’t their fault. They just never went through the process of being trapped in their own skull and never knowing if they would ever talk to anyone ever again. I suppose maybe it’s like being in a war. You had to be there, and eventually you start spending all your time with the people who were there, because they knew what it was like.

  I would see other threeps on the street and we would do a wireless handshake with each other where we would send each other our addresses as we walked by. Later on we would sign on into the Agora—the first version of it, the one that was like a quest-oriented video game without the quests—and find each other and just hang around and talk. On the Agora we had avatars that looked like our bodies did when we were healthy—hardly anyone faked their image at first—and you could be yourself, or something close enough to yourself that it felt normal.

  I’m not sure when it was that I started thinking of myself as a “Haden.” It snuck up on me. I think it started when I realized that no matter how much I tried to pretend that looking like a robot didn’t mean anything, it did mean something, in the way people thought about me and reacted to me. Not just about whether I could take a seat at Starbucks, but whether people treated me like an actual human being. I had some drunk son of a bitch break a beer bottle over my threep’s head once because he wanted to see if it would hurt me. I had to keep from breaking his nose with my metal fist, which I knew would hurt him.

  I think I finally knew I was a Haden one night when I went out with a bunch of high school friends to a bar, and they were just sitting there drinking and bullshitting each other, and I was sitting and bullshitting with them, but what I was really doing was checking into the Agora and making plans with friends there to run a game with them as soon as I could get away from my meatpals—”meatpals” meaning people you knew outside the Haden world. I was doing my time with my meatpals but waiting to get back to my real world.

  I had become a chimp, and wanted to go sit with the other chimps, I guess.

  Josefina Ross:

  One thing it would be wrong to do is to think of the Haden community as one homogenous group, just because they all had the same disease afflict them. In reality the only thing they all had in common was the disease. Otherwise, Hadens are one of the most diverse communities that ever existed. There are rich Hadens and poor Hadens, educated and ignorant Hadens, Hadens of every creed, color, gender, sexual and political orientation, age and previous health status. In the United States, at least, the Haden community was a mirror of society at large.

  And because of that there were some immediate schisms in the Haden community, even as it was realizing it was a community. One of the largest schisms, and one that remains to this day, was the one between the Hadens who spent most of their time in the physical world, through personal transports and daily interaction with non-Haden family and friends, and the ones whose lives were inward facing into the new world that the Hadens had started to create, through the Agora and other spaces and social structures that they’d established.

  That schism was partially but not entirely predicated on age, and other factors played into it as well, like how strong the Haden’s physical world support structure was, as well as certain personality markers. Hadens who were naturally introverted were slightly more likely to spend more of their time facing inward to the Haden community.

  The number of Hadens who were entirely one way or another was small, of course, but the general division was real, and had a substantial impact on how the community as a whole began to define itself.

  Terrell Wales:

  The other thing to consider is that after a while the physical world just becomes depressing. Look, in the online Haden space, I have what you could call a house—it’s a permanent chunk of a server that I own. I’m able to build and create there.

  So my house is a log cabin in about six square miles of virtual Vermont forest. Even when I first got the server space the technology was good enough that you could walk right up to the trees and you could see all this detail, and all the other sensory data could be piped in. You could have every day be peak foliage season if you want to. I did that for about a year once. A creek runs out by my cabin, and I see deer and foxes walk by. It’s all gorgeous. And it’s all mine. And maybe it’s not real, in the sense that it physically exists in the world, but you know what? I sit on my porch and look out into the woods and it feels real enough. I’m home.

  And then I have to come back into the physical world. And first off, I have this bloated, pale body that doesn’t move. Food comes in by a tube and then a few hours later goes out in a tube. The body—my body, me—sits in room piled up with medical equipment and charging chair for my threep. I share an apartment with three other Hadens, with a spare room for our caregiver. It’s the world’s most depressing bachelor pad. And then I go out in my threep, and I never quite forget that I look like a piece of CGI in an old science fiction movie.

  I mean, you tell me. Which would you rather spend time in? That log cabin in Vermont, or the crappy apartment stuffed with dudes in tubes? Is this even a question?

  Irving Benn
ett:

  I filed a number of stories about the Haden community before we hired Tanna Hughey, who was a Haden herself and could report from the inside, as it were. In the early days, when I would give talks about covering the community, the parallel I would give people to describe Hadens was the deaf community. The deaf community is largely invisible to people who aren’t in it, but on the inside it has a very strong sense of identity that’s informed by the one thing they have in common: their deafness.

  But within that community there have always been factions. Those who wanted their children educated in sign language versus those who wanted their children educated in English. Those who saw the benefit of cochlear implants versus those who saw them as a threat to the cohesiveness of the community. Those who wanted to spend their time in the larger culture, and those who felt it was more important to help the deaf community develop its own unique culture.

  The Haden community was very much the same way—with its own unique variations and spins, of course. But what was obvious from even the early days was that there were some people who saw contracting Haden’s as the worst thing that ever happened to them, and were desperately searching for a way out of it. And then there some for whom Haden’s was the best thing to happen to them. Suddenly they had a community and opportunities where they might not have had them before. Their world quickly became everything inside—stepping outside of it when they had to, but only then.

  For them, being a Haden was a cornerstone to their identity. Making other people understand that, Hadens and non-Hadens both, was the challenge they had to deal with. Some things were easier to deal with than others.

  Lawana Dellinger, Haden’s syndrome patient:

  I met Michael in the Agora, at a singles’ mixer. This was early, when it was still a little strange to think about dating or relationships between Hadens. Not just because of our bodies being locked up but because often you’d meet someone who was thousands of miles away. But then you’d think, well, why does it matter that we’re thousands of miles away? It’s not like we’re going to go for long walks anyway. So we all got over it.

  I liked Michael right away. He was funny and smart and we were both football fans, although I was a Giants fan and he was for the Raiders. I decided I could overlook that, and we started dating. About a year later he proposed. I said yes. My family wasn’t entirely happy about it. I think my mother was under the idea that despite the fact I visited her in my threep every day, I was in a coma of some sort. So Michael was taking advantage of poor, defenseless me. My father talked her through it. We had two weddings. One at First Baptist, in our threeps, and one in the Agora with our Haden friends. We moved in together at the Haden residential wing of George Washington University Hospital.

  After we’d been married for about a year, Michael and I were talking one night about the future and what we wanted to do with our lives, and I said something like, well, before I got sick I wanted to have kids, but now that’s not possible—and then Michael stopped me and said, what do you mean it’s not possible? And I started to say something about it and then just sort of let my mouth hang open. Because there was no reason I couldn’t have children. Biologically. And there was no reason we couldn’t have children. It would be complicated, and we definitely wouldn’t be having them the old fashioned way. But we could have them.

  So we went to our doctor and said, we want to have children. She looked at us like we had turned into poodles. And finally she said, I think we need to have this cleared. And we said, why? We’re adults, we’re of sound mind, and my body can carry a child, can’t it? We started pressing her for reasons why she seemed uncertain. The more we talked to her the more defensive she got and the angrier I got. By the time we left the office I was either going to cry or kill her.

  But she was just the first. We talked to five or six doctors about it at the hospital and none of them would do it. There was no medical reason—I was a Haden but I was healthy and my reproductive system worked just fine—so there had to be some other reason for it. And of course the reason was obvious. So was what came next.

  Evangeline Davies:

  Dellinger v. George Washington University Hospitals was a huge case for us, in terms of advancing the rights of Hadens. It was a reminder that first of all, Hadens were still human beings, with the same rights and opportunities, and that those couldn’t be taken away merely due to prejudice or statistically unwarranted concerns over liability.

  It also—and importantly—forestalled a lot of other cases that we would have to take on. Dellinger raced through the courts and the decision at the Supreme Court was 9-0. It was a precedent you could hang your hat on. A lot of Haden-related cases we had settled out immediately afterward.

  Also it was the first case I ever got to argue in front of the Supreme Court, so I have good memories there.

  Lawana Dellinger:

  We named our first daughter Evangeline. It was a way of saying thank you.

  And yes, being Haden parents to non-Haden babies was a challenge. It’s very hard to describe how strange it is to be in your threep, holding your infant steady while she nurses at your breast. And whether or not we won the court case, we still got lots of looks when we’d take Eva to the park. More than once we got asked by police to prove she was ours. It took everything I had sometimes to keep from hitting someone.

  We got flack from Hadens too—I get notes saying that because our children were non-Haden, we were not committed enough to the Haden cause. And I was like, excuse me? There’s a cause? Look, I’d like to help you with your cause and all, but right now I’ve got a diaper to clean out. My daughter takes precedence over your cause.

  Eventually people forgot about us, which was fine. Now we have two daughters and a son, and my son likes to joke that he has two sets of parents, but one of them doesn’t get out much. He thinks the joke is funnier than it is. We’re a normal family, really. And I think that this tells you that even in this new world of Hadens, or however you want to put it, there’s still people in it, just trying to live their lives. That’s the real story of any world you live in, isn’t it.

  PART SIX: TWENTY-FIVE YEARS

  Monique Davis:

  Does it feel like twenty-five years? No, but I don’t think long stretches of time ever quote-unquote feel like however long they are. My daughter was born eighteen years ago. I look at her sometimes and it feels like she was toddler yesterday. Everything in the past gets compressed together. It’s compacted for easy sorting, maybe.

  But every once in a while I remember how long it’s been. This year’s crop of internists includes a doctor who contracted Haden’s in the womb. She’s smart as they come, and her entire life has been spent in a threep. I think about that and I shudder; she doesn’t think about it at all. It’s just always how her life has been. Most of her fellow internists, none of whom remember life before Haden’s, don’t think it’s that unusual, either. That’s when it feels like twenty-five years.

  Natasha Lawrence:

  What bothers me after twenty-five years is that we still don’t have an effective vaccine. We still don’t have a cure. What we have are established protocols for locking down the spread of the virus when it surfaces, and a whole array of therapeutic machines to mitigate the effects of lock in. We can’t stop the disease. We just make it less awful when it happens.

  And yes, that feels like a failure to me. In the last two and a half decades we’ve learned so much about the brain. We’ve made enormous steps in integrating these brain prostheses and have built entire industries around serving Hadens and making their lives easier and more tolerable. And still every year hundreds of thousands of Americans get sick with the latest strain of the Haden virus. Tens of thousands die. Tens of thousands experience lock in.

  You know what it’s like now? It’s like car accidents. Even with automated cars, people still get into car accidents, because they try to overrule their autodrive or refuse to engage it. We still lose ten to twenty thousand people a year in
traffic accidents. No one thinks of it as an epidemic. It’s just the cost of doing business. The cost of living our lives. Haden’s syndrome has become that now. A chronic disease of our nation, and of the planet.

  Thomas Stevenson:

  My understanding, or at least the way it was explained to me, was that the Haden virus is simply a highly adaptable and easily mutating virus; that enough changes about it from year to year and season to season that we simply have a hard time keeping up. One of the questions I had early on was whether this high rate of mutation was something we were seeing in the lab, or whether it might be that new strains were being designed or at least cultivate elsewhere and released into the population. We did see mutation in the lab, but not at the rate we would expect for the level of mutation in the wild. As with so many things about this virus, our data was ultimately inconclusive.

  Elizabeth Torres:

  They didn’t catch Margie Haden’s cervical cancer early enough, so by the time it had been diagnosed it had metastasized, into her liver and her lungs and brain. And I remember very clearly what she said to me. She said “This is a victory, Liz. I lived long enough to die of something else completely.” And then she laughed.

  I thought it was her lighting a candle rather than cursing the darkness, if you know what I mean, but that night I understood what she meant. It was a reminder that the disease that she gave her name to—the disease that defined her in ways I know she wished it hadn’t—was not the only thing about her life. She lived long enough to die a “normal” death. Now, maybe that wouldn’t mean anything to anyone else. But it meant something to her.

  Haden’s did give her one small blessing. Her personal transport allowed her to see people and be seen, right until the end. She never tried to hide what was going on with her physical body, but by then people were so used to her being in her threep that she was able to use it to say goodbye to the people who were important to her, and not trouble those who didn’t want to be troubled. It made it easier for her to make it easier for others. And that was Margie all over. When we laid her down next to Ben, I knew she had come to her happy ending.