Unlocked - An Oral History Of Haden's Syndrome

PART FIVE
THE NEW WORLD

Josefina Ross, author, “The Undiscovered Country: Hadens and Their World”:

Most people don’t know this, but the word “robot” comes from a 1920s play by Czech author Karel Čapek, in which humans create artificial people as workers and slaves, and eventually those slaves revolt and replace the humans as the masters of the earth. The robots in the play weren’t mindless automatons, or just machines, like what we call robots today. They were artificial people with minds and ultimately desires of their own. They were, in fact, very much like how people with Haden’s syndrome became, once they were outfitted with their personal transports.

And this presented the world, finally, with the “robot revolution” that it had always imagined, through science fiction and through all those films where the machines, sooner or later, tried to displace the humans. Only this robot revolution wasn’t about replacing humans, it was returning humans who had been lost to their rightful places, in robot bodies. It was a peaceful robot revolution, and that was something almost no literature, from Čapek forward, had ever prepared us for.

So it’s not entirely surprising that at least at first it was rough going.

Terrell Wales, Haden’s syndrome patient:

You noticed the looks but at first you really didn’t give a damn because, in my case, after a year trapped in my own head, I was able to walk and talk and see and touch things again. You could have made my threep look like a 200 pound sack of manure and I wouldn’t give a crap, no pun intended. So, yeah, I noticed the looks, but I didn’t care. I was out.

And anyway, at the start people would stare but they would smile and ask to take a picture with you, or take a picture even if they didn’t ask. Because threeps were new and still a novelty. For a couple of months there it was like being a minor celebrity. Like a character actor on a TV show or something. Then after a few more months there were more threeps around and everyone got used to us. It’s like, yes, you’re a robot, okay, move out of the doorway so I can get into the store. Which was fine, too, because after a while being a minor celebrity is a little annoying.

I think people started to be annoyed with threeps about maybe a year or so after I got mine. Like this: You’d go out with your friends and let’s say you meet at a coffee shop. Well, the coffee shop is crowded and people are looking for somewhere to sit, and they see you sitting with your friends and they think, “That thing’s metal ass is taking up a chair I could use.”

I remember the first time I was out with friends at a restaurant and someone asked if they could take the seat I was sitting on. I stared at her like she was asking to strangle my cat and I told her I was using it. She said to me, “But you’re not really here. You shouldn’t need it.” I told her to fuck off. She must have complained to the manager because the next time I went there they had a sign saying that threeps had to give up their seat if asked by a human customer. Get that—a human customer. I left and didn’t come back but soon enough it was standard practice at most places: If you were a threep, you lose the seat.

Evangeline Davies, counsel, American Civil Liberties Union:

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 Bennett:

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.