Unlocked: An Oral History of Haden’s Syndrome (7 page)

They got it all set up and then Charlie Sebring said to Margie that she could connect anytime she wanted. A minute later the personal transport gave a little twitch and a jerk, and then raised its hand close to its face, as if looking at it. Then it stepped out of the gurney it was on, and everyone—
everyone
—took a step back. The personal transport walked over to the mirror in the room and stood at it for a good minute, just looking. Then, in a
very
Margie Haden move, it looked over its shoulder at the President and spoke, clearly, in a voice that sounded just like Margie’s always did.

Rebecca Warner:

I remember it. She said, “I look just like C3PO!” Which, once the press got hold of the comment, is how personal transports started to be called “threeps.” I never liked the term but no one ever asked me for approval, so.

Janis Massey:

The President broke down. Just broke down and collapsed knees-first to the floor. Mario started toward him, but Margie said “no,” and went to him, kneeling and holding him and stroking his hair, talking softly into his ear.

For a minute or two it was strange, that here was this machine, this robot, or whatever you want to call it, kneeling down and comforting the President of the United States. And then after that minute or two, it stopped being a robot and the President and became just a wife, holding her husband, telling him that she loved him.

Rebecca Warner:

It was a beautiful and unexpected moment. It really was. And because I am who I am, while I was standing there watching this gorgeous, moving moment, I had to fight not to burst out laughing. Because the one thought that was going through my head, over and over and over, was
holy shit we’re going to make so much money off this
. And we did.

Irving Bennett:

I was invited to the White House press conference by [White House Press Secretary] Adrienne McLaughlin, which was unusual and which annoyed our regular White House correspondent, but when you’re told you should be at a press conference by the White House, at the White House, you go.

I was there and I noticed a number of other science and technology writers and reporters from other organizations, so I thought that we might be getting one of those occasional space-related announcements, like we’re going to go Mars or something, which never pans out, and especially wouldn’t pan out now, because we were spending so much money on Haden’s.

Then the President comes out, and I notice that for the first time in nearly two years the man actually looks happy. He’s smiling, he’s waving to the press corps, and he looks like he’s actually slept, which is also something that hasn’t happened in two years. He walks over the podium, looks at us like the cat that ate the canary, and before we can even sit back down, says “ladies and gentlemen, the First Lady of the United States of America.”

And in walks this golden robot, who strolls over to the podium, gives the President a hug, and then stands there, hands on the podium, and says, “So, how do I look?”

It was the first time I have ever heard complete, utter, dead silence at a Presidential press conference. And then ten seconds later we were all yelling at the top of our lungs, trying to get questions in.

Rebecca Warner:

The First Lady’s press conference was huge for us. That’s obvious. But it was the follow-up press conference with Chris Shane two weeks later that really sealed the deal for our company. You really can’t beat a child’s first steps happening because of your invention for making a good impression on the public.

We filed patents immediately, and since we hadn’t taken any HRIA funding, we didn’t have to accept the statutory rate when other companies came to license the technology, which they did immediately. Charlie and I were billionaires by the end of the month. I bought GreenWave from my dad, finished up or bought out remaining outside contracts and then converted the building over to making personal transports. Sebring-Warner was the first to market and the biggest name in the market from then until now. I wish Charlie had stuck around for all of it.

Summer Zapata:

Charlie Sebring is probably the classic example of a personality unsuited for success. What he was interested in was the work—the design of the personal transports, not all the politics that eventually swamped the pure joy of engineering that in the few interviews he gave he said he had felt. Sebring-Warner went from being a two-person shop to the cornerstone of an emerging industry almost literally overnight. Rebecca Warner navigated it just fine—she was born to run a company.

Sebring was less fine, and everyone I spoke to who knew him said it was remarkable just how quickly the pressure of overnight success and fame got to him. Within six months of the First Lady’s press conference he became something of a recluse, sending in his work by email and avoiding everyone but trusted friends. Six months after that he told Warner he wanted out and sold his interest in the company to her at a substantially discounted rate—which to be fair only meant he was a billionaire a couple of times over rather than several times over. Six months after that he took his own life because he felt hounded by family and friends who he thought were more interested in his money than him. His suicide note was five words. “I thought I was helping.”

Well, he did help. But there was everything else around the helping that drove him down. The irony is that the one person who did the most to let those who were locked in free themselves from their isolation, was the one person who ended up the most isolated and alone.

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.