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

  So every week I printed them out. Most weeks I didn’t look at them, but one evening I was out with friends and remembered that I forgot to do the spreadsheet, and I didn’t want to be known as so inept that I couldn’t even do that. So I left the party early —11pm—and went back to the office to run off the report. As I was collating the paper I actually looked at the report and noticed one printer had a weird usage pattern. It usually went off-shift at 10pm, which was the end of our second shift, but every day in the last week it was active between 11pm and midnight. So I pulled up the real-time monitor and saw the printer was running right at that moment. I went down to the printer floor to see what was going on and there was Charlie, printing out something that looked like a hand. He looked very surprised to see me.

  Naturally, I asked him what he was doing. He said he was doing some last minute client work, so I said, fine, so show me the work order. We didn’t do anything at GreenWave without a work order. Then Charlie got a panicked look in his eye, and that’s when I realized whatever he was doing, he wasn’t supposed to be doing it. So I decided to get tough with him and told him that he could either tell me what he was doing, or he could tell his boss the next morning, with me providing the spreadsheet as incriminating documents.

  Charlie gave in and told me he was making a prototype. Great, I said, a prototype of what? And he explained that he had been following the development of the neural networks they were making for the Haden’s syndrome people, and realized that even if they got the networks to function, people would still be stuck in bodies that didn’t move. He was building a machine that would integrate with the networks so that people would be able to walk and move and get out in the world.

  I asked him to tell me more, and we spent the next five hours going over everything. GreenWave had access to the Haden research database because we contracted with GE for elements of their neural networks, and Charlie had been keeping up with the neural network development. A lot of research money was going into biological solutions to fixing Haden bodies but almost nothing for machine solutions—the closest thing was an old design of a scooter with a large tablet sticking up on a post. It gave minimal mobility but no ability to hold or grasp objects or interact with people in a way that didn’t feel like, well, you were a scooter with a tablet on it.

  What Charlie was prototyping was much better: An actual body with touch input, shaped like a human body and with all a body’s capabilities. It was a robot, but instead of a robot brain, it had a human brain controlling it. It would be a new body. One that wouldn’t get tired or ever get sick like the Haden’s victims own bodies would.

  Charlie kept going on and I honestly didn’t understand more than about twenty percent of what he was saying. But when he was done I did two things. The first thing I did was I went and put that spreadsheet through the shredder. The second thing I did was go into my dad’s office the next morning and told him I wanted every penny of my trust fund right now, and if he didn’t give it to me I would tell mom about his affair. And his other affair, too.

  When dad agreed to that, I immediately rented the use of the printer Charlie had been working on. Then I marched down to the printer floor and told Charlie to quit his internship, he and I were going into business, full partners. And he did. I took a picture of the two of us right after to commemorate the moment. He looked dazed, like he just got hit by a truck.

  Summer Zapata:

  On paper, Charlie Sebring and Rebecca Warner didn’t look they should work together at all. She was extroverted, aggressive and business-oriented, and he was classically introverted and focused on the project, almost to the exclusion of ordinary bodily functions; there’s a rumor that one day Warner came into their office and poured a gallon jug of water over his head as a hint that he should go home and take a shower.

  The one thing they had in common was a commitment to the vision of what they started calling “Personal Transports.” Sebring saw the practical need and had enough rigor as an engineer not to let his design wander off into the thickets. If you look at his first set of prototypes they were, from a design point, ruthlessly robotic—all function and no esthetic. He wanted Haden’s patients to be able to move. He didn’t care what they looked like as they did.

  Warner handled all the rest of it. She kept up with the business end of the Haden Research Initiative Act and worked to exploit the gaping hole where the Personal Transports would eventually go. Warner’s congressman was on the HRIA budgeting committee; she flew into DC personally to lobby him to allocate funds to biological solutions to Haden paralysis, rather than mechanical solutions. She knew that if federal funding started actively moving into her field that the project she was funding out of her own trust fund was going to get swamped.

  And it worked; that year’s HRIA allocations were heavy on biology and very light on mechanics. It helped that several very large pharmaceutical companies were also lobbying heavily for biological solutions, of course. But Warner’s personal touch didn’t hurt.

  Warner also handled the esthetic aspects of the Personal Transports, driving Sebring to make them as attractive as possible before they showed them to the world. She was also the one who devised the company’s publicity masterstroke.

  Rebecca Warner:

  They call it a publicity masterstroke but what it really was, was paying attention. The two most famous Hadens in the world were, in order, Margaret Haden and Chris Shane, Marcus Shane’s toddler. They were also the two most well-connected Hadens, since once the networks were approved for general use among Hadens, they were very likely going to be two of the first people fit with them. Which meant, honestly speaking, that if we wanted to show off our wares, it made sense to work with them. So I told Charlie to make two very specific prototypes: One designed specifically for Margaret Haden, and one specifically for Chris Shane. I wanted them ready for when both had their networks installed.

  The first Margaret Haden prototype Charlie took things too literally and tried to make it look like Margaret Haden, including a representation of her face. It was creepy. There’s a concept called “the uncanny valley,” in which something that’s almost but not quite human is repulsive because you’re so very aware of it being fake. This was that. I pulled him away from that direction and gave him some design points. In particular I pointed him at the female android from a very old film called Metropolis and suggest he use that as a starting point, although he should probably dial back the overt sexuality. Margaret Haden’s public image was fit and healthy, not sexpot. It took him six tries, but he got it. Chris Shane he got in one. Children are easy.

  I had developed a good relationship with [Ohio District 8 US Representative] Ed Curtis, because of his position on the House HRIA committee, and I knew that he and President Haden were friendly, so I asked him to call in one favor from the President. He was skeptical but I eventually convinced him. Ed came through and Charlie and I got an audience with President Haden where we showed him photos of the personal transport and video of it in action, being remote piloted by Charlie, and told him that a prototype was ready for the First Lady, tuned to the type of neural network I knew she had in her head.

  What we hoped for was that he would be interested and that we might be able to show the prototype to him, as part of a process to getting whatever approval we needed to have the First Lady to eventually use it. But after we explained the thing to him, he looked at me and Charlie and said “Is it here?” Meaning the prototype. And it was, since we had put it in the back of a rented panel van that we drove from Ohio. So we told him so. Then he asked “Is it ready?” Which took me a minute to realize that he was asking whether the First Lady could use it now. As in, that minute.

  I had no idea how to answer that. I wasn’t expecting that question. President Haden stopped looking at me and looked at Charlie, who, bless his clueless heart, said “It should be, sure.”

  Five hours later we were in the West Bedroom, where the First Lady’s body and medical team were, prepping the pr
ototype to sync with her neural network.

  Janis Massey:

  I thought it was a bad idea. The President’s Chief of Staff thought it was a bad idea. Mario [Schmidt, Head of the Presidential Secret Service detail] nearly had a stroke trying to argue the President out of it. But the President wouldn’t be talked out of it. The only person who possibly could have talked him out of it was Margie herself, but she was willing, although it seemed to me more for her husband’s sake than her own.

  The personal transport was wheeled in on a gurney, along with a power source on a second gurney. I asked how it was supposed to work, and Charlie Sebring said that pretty much all the First Lady had to do was connect the thing to her internal network and then it would be under her control. Mario made a final objection that the personal transport could be dangerous or introduce viruses to the First Lady’s neural network. Rebecca Warner said, more than a little peremptorily, that she and Charlie Warner would be absolutely stupid to try to give a First Lady a virus in the White House, where the Secret Service could shoot them both dead at point blank range. As I said, peremptory, but she also had a point.

  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.

  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 t
hreep 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: