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.
PART SIX
TWENTY-FIVE YEARS
Monique Davis: