Next: Questions about Language
JOAN RINGELHEIM: Welcome, Ms. Johnson, and welcome to you in the audience. I wanted to start by telling you a story of my first and only trip to Auschwitz. It was in 1989 and it’s not an easy trek in the context of the environs of Auschwitz and many things were a little bit surprising. It was in some sense surprising to see and hear (microphone noise: was that me? Did I do something wrong?) Okay. To see many eyeglasses, to see men’s shaving brushes, to see a room filled with pots and pans. But I have to say to you, and I’m embarrassed to say it but I think because of this evening it’s very important to say it, the room that surprised me the most was the room with the prostheses. In spite of all my studying, in spite of knowing about euthanasia, I had never thought about all of the people who came to labor camps and killing centers who had prostheses. I don’t remember seeing a wheelchair, but I suspect there were wheelchairs there. And what this story for me means in some way, the Nazis didn’t invent human difference and we’re in fact all very different. But when you look at the history of the world, you see societies and individuals stating differences and then very often creating hierarchies of those differences. In the Nazi era, the Nazis, the Germans under the Nazis, we had a murderous hierarchy. It’s not always murderous. Sometimes it’s murder on a lesser scale, but there have been murders at other periods. And it seems to me one of the things about this evening is to complicate the idea of difference and perhaps to transform what you think is hierarchically better and worse, and that’s how I see this evening for us. So I want to start first by asking you what impressed you or what was important to you about the exhibition that you saw in Deadly Medicine?
HARRIET MCBRYDE JOHNSON: Well, it’s hard to boil down. There’s an awful lot of really important content, and I have to say it does a beautiful job of laying out the history, the incomprehensible history in comprehensible terms. And, you know, I, I think it lays out that the, the things that were done to people with disabilities, the eugenics ideas, were really at the heart of everything else. And that it all in a weird, logical way flowed from this notion that, you know, humans can be perfected biologically. And this notion that if you have a problem, a social problem, you should eliminate the people who have the problem. Initially it was simple things like maternal health to prevent birth defects, something that we in our society certainly say “rah rah” for, but it’s you know, one more step, one more step from that to sterilization to ultimately murdering people.
I guess since you talked about a surprising reaction, let me tell you about one of mine: the wheelchair. There is a wheelchair there that was from a facility for people with epilepsy and I suspect that that facility had a lot of people with other brain conditions, probably cerebral palsy, strokes, that often accompany epilepsy, and so this wheelchair may have been used by one of the folks with cerebral palsy, the crowd I run with. And when I saw this chair, my first surprising reaction was, what a cool chair. [laughter] My friends know that I love vintage wheelchairs. I am sitting in one now. Finally got out of EJs, y’all, last year.
JOAN RINGELHEIM: Do you want to explain that for those of us who don’t know.
HARRIET MCBRYDE JOHNSON: Everson Jennings. It was the premiere company around 1945 and they have been bankrupt for many, many years, but I was in one until last year. But anyway, this chair in the exhibit was one of the old prewar wooden chairs and I actually had sat in chairs like that as a child. I had a loaner that had the recliner feature. And so I looked it over and it had a really unusual suspension system. I couldn’t tell whether it had a tilt mechanism or whether they were shock absorbers, but there was something going on in the frame that was different, and it was like, you know, some of that cool German engineering. And that was the thing I wanted to touch.
And then, of course, we have these bonds with our wheelchairs. They are very personal and many of us love our chairs. And I started thinking about, oh, I wonder, you know, without really thinking, I was like oh, I wonder whose chair it was. And then I thought, wait a minute, it’s an institutional chair. It may have bonded with a person for a while. But it probably didn’t belong to one owner. And certainly not over its entire history. It would have been many users and it would have been owned by the institution. And then I just desperately wanted to know about all the people who had sat in that chair and how it came to survive. And, you know, the care seemed a strange kind of survivor that I wanted to know more about and I had a real hard time not touching it. [laughter].
JOAN RINGELHEIM: But you didn’t?
HARRIET MCBRYDE JOHNSON: I didn’t. I would get in trouble.
JOAN RINGELHEIM: That was good. You would have been in trouble.
HARRIET MCBRYDE JOHNSON: But, that was the strange reaction. My other reactions were probably about what you’d expect.
JOAN RINGELHEIM: Were you scared?
HARRIET MCBRYDE JOHNSON: Yeah. I was scared of going into the room with the big block floors, the kind of recreation of the T4 gas chambers. I was pretty scared to go in there. And there are pictures of children on the wall and there was a little girl with a bow in her hair. That impressed me because I thought, you know, somebody valued her enough to put a bow in her hair but it wasn’t good enough to keep her out of trouble. Yeah. Yeah.
JOAN RINGELHEIM: Is there anything missing in the exhibition for you?
HARRIET MCBRYDE JOHNSON: Yes. You mentioned, or it was mentioned somewhere that it began with sterilization. I think it began before that, with institutionalization. And that was a worldwide phenomenon. I know that in the United States beginning in the middle nineteenth century, there was a group of very enlightened advocates, physicians, public policy wonks who went around and in this country persuaded state governments to build huge institutions. And it was overtly sold with the idea that we can get these defective, dangerous, undesirable people out of society and prevent them from reproducing. But that was really the beginning of it, the idea that people were, you know, defective people were causing poverty and disease and all the other ills of industrialization, and that it would be possible to quarantine them, and it was promised in North Carolina that in just two or three generations these problems would be wiped out.
JOAN RINGELHEIM: Maybe we have to look at institutions here, those institutions, as the first ghettos.
HARRIET MCBRYDE JOHNSON: Yeah. Yeah.
JOAN RINGELHEIM: It’s interesting when you read Raul Hilberg, you see that he says first in order to genocide a people or to do anything to them, you have to define them, but then you have to put them together somewhere. You have to concentrate them somewhere in order to then do something.
HARRIET MCBRYDE JOHNSON: And I think also break their alliances with, you know, the desirable people, take them away from their families who might defend them in the case of disabled folks or for ethnic communities, the people they might otherwise do business with or be neighbors with or whatever, that you separate them and that makes them all the more powerless.
JOAN RINGELHEIM: I wanted us to see the connections that you were making when you went through the exhibition.
HARRIET MCBRYDE JOHNSON: Uh huh.
JOAN RINGELHEIM: But I want to do it through some other issues.
HARRIET MCBRYDE JOHNSON: Okay.
JOAN RINGELHEIM: So that you can bring it back and forth. But I also wanted to tell you all something that I just discovered the other day, which is not in the exhibition, which completely shocked me, was that in November of 1933, the Nazis put out a law that was called “A Law on Animal Protection.” And I’ll just read you one line: “it’s forbidden to unnecessarily torment or roughly mishandle an animal,” which I found… It’s not ironic, it’s the contradiction, not having a law protecting all humans, but a law protecting all animals is simply quite bizarre. So I’m going to start asking you some different questions that you can both relate to the exhibition and not, or relate them to the exhibition and to the present.
HARRIET MCBRYDE JOHNSON: Okay.
JOAN RINGELHEIM: So I first want to ask you questions about language. When I taught philosophy many years ago, I discovered that people learned how to be politically correct but they never knew why. So they knew under certain circumstances they should never use certain words. But when you went to another group, which had similar prejudices against them, students had absolutely no idea, so they used the most vile language you can imagine. So I want to ask you about the language that you use and other people -- because you’re a little bit different than some people, and other people here are different than each other, on the language -- so first let me ask you, what is a disability? How do you define it? And you notice in the exhibition, the word “handicapped” is used, which was the old word. It’s not just the Nazi word, right?
HARRIET MCBRYDE JOHNSON: Yeah. “Handicapped” was the polite word in my childhood. That was what nice people said where I lived. My school, though, said “Crippled Children’s School.” And my summer camp was run by a place that had the word “cripple” in its official organization. So those were the nice words back then. And part of what the movement has done is a continual redefining and self defining that sometimes seems kind of silly. But it’s really rather powerful. And in 1977, I was a delegate to something that I think was called in the legislation the White House Conference on the Handicapped. And by the time we convened, it was called the White House Conference on Handicapped Individuals, and one of the things we did at the meeting was decide that we were the White House Conference on People with Disabilities. And there was a lot of back and forth and arguing about that in 1977. But the idea, and this is still, I mean, the acceptable language today is what they call “people first” language. If you’d say a person with a disability, or a person with a specific disability like multiple sclerosis, or a person who is deaf. I have never totally liked that. It seems to me a little bit like calling a woman a person with a vagina. [laughter].
You know, it’s just you know, I don’t know. I’m a crip and that’s okay. But I like to get this question because I don’t use the correct language all the time in my political work, when I’m talking to my friends, and it annoys some people because some people find it very hurtful. But to me, I mean, when I’m a lawyer, when I’m writing for a mainstream publication, when I’m a professional, I try to use the language that’s generally acceptable. But when I’m among friends, when I’m among my people, that other language comes out. And it was the language that we use for ourselves and what I call the “disability ghetto.” We called each other “crips.” We called each other “feebs.” We called each other “spazers, crazy,” you know, whatever. And the teachers would say, “now, don’t use that language. That’s not good language.” And so it was part of our rebellion to not be, you know, the “crippled children” like we were on the school bus or on the telethon but to be crips, and, so that’s kind of where I came from. But it’s something that’s very much argued about and there are real divisions in the community and lots of the folks in our community, particularly folks who haven’t had disabilities very long, want to be people first, they want to be as… they want to emphasize the similarities with other people and that’s just not kind of where my experiences put me.
JOAN RINGELHEIM: You know, my construal of the reason why disabled… “person with a disability” rather than “disabled person” is that the disability is part of who you are but not all of who you are. However, I was told quite specifically, “do not say disabled person.” And then I spoke with someone who is head of one of the disability organizations and he said, “we have a fight about which word to use.” So it isn’t monolithic how you speak. Now, in your book.
HARRIET MCBRYDE JOHNSON: And I do even know people who are physically challenged and differently able. [laughter]. You know...
JOAN RINGELHEIM: It doesn’t do it for you?
HARRIET MCBRYDE JOHNSON: No.
JOAN RINGELHEIM: But when I read your book and saw you use the word “crips,” so I thought, okay, I don’t know whether I thought that gave me permission to say someone had a “crippling disease,” but I was really told immediately “do not ever use that word.”
HARRIET MCBRYDE JOHNSON: Right. Yeah, and it’s funny because that’s not something I would naturally say. It doesn’t really bother me. But, yeah, I just have never had the need for that phrase. Maybe that’s not the way I think of those diseases. I’d say somebody has rheumatoid arthritis and they have, you know, depending on what the situation is. If I’m trying to talk about moving them from place to place, I might say, well, you know, “gee, I can’t walk very far.” I would tend to talk about what matters for whatever we’re discussing rather than characterizing the disease or the person generally. It just kind of wouldn’t come up that way.
JOAN RINGELHEIM: Now, some people say “wheelchair bound.”
HARRIET MCBRYDE JOHNSON: Oh, that’s one I cannot abide.
JOAN RINGELHEIM: Why don’t you explain?
HARRIET MCBRYDE JOHNSON: Well, as I was saying before, I love wheelchairs, and can you imagine how confined or bound I would be if I didn’t have one, and I had to be, you know, toted in people’s arms all the time or, you know, dragged around in a sedan chair? So that particular language really gets my goat because my own grandmother, before she died, needed a wheelchair for about two years, and she says, “I’m not ready to be wheelchair bound.” And as a result, she stayed in her bed most of the time. You know, she didn’t want that label, even knowing me. And I have seen that a lot with newly disabled people. You know, “I’m not ready to be wheelchair bound,” when if they would just go with it, it would be an easy way for them to move from place to place and to continue living their lives.
JOAN RINGELHEIM: Right. Maybe one statistic would be interesting for the audience. In 1970 when the ADA, the Americans with Disabilities Act came out, the opening line is “there are 43 million disabled persons in the United States.”
HARRIET MCBRYDE JOHNSON: Right.
JOAN RINGELHEIM: I’m sure there are more, many more.
HARRIET MCBRYDE JOHNSON: And actually it was 1990, but I think
JOAN RINGELHEIM: 1990. I’m sorry.
HARRIET MCBRYDE JOHNSON: I think we have used the same number since 1970 [laughter] because the truth is.
RINGELHEIM: I’m so glad I slipped.
HARRIET MCBRYDE JOHNSON: The truth is nobody really knows and I think nobody can know because it’s an uncountable phenomenon. The 43 million, I think it’s 43 million adults, is what’s usually said, that was based on fairly traditional notions. The people that most of us would pick out in a lineup and say “not normal,” you know, the folks in … and that’s not correct by the way. [laughter]. But, you know, the people who are in wheelchairs, the white cane crowd, the people who cannot hear, those are the folks in the 43 million. But there’s actually a much vaster group who encounter disability prejudice or disability discrimination at some point or other. And a lot of the folks that I have represented, you know, are adamant, “I’m not disabled, I’m not part of the ADA,” because it’s somebody who’s hurt their back and the employer thinks they can’t do their job when they can. You know, so a lot of it is a social definition, a product of prejudice, and it’s really a very fluid category, much the same way that race is a lot more fluid than most of us believe.
JOAN RINGELHEIM: Maybe later we’ll talk about normal and what’s a person.
HARRIET MCBRYDE JOHNSON: Right.
JOAN RINGELHEIM: So I’m going to move a little bit now. Why as a kid did you protest telethons? I think most people in the audience who are not disabled and who don’t know anyone in the disabled community think of telethons as benign and probably good things because all this money comes. So what’s wrong with them?
HARRIET MCBRYDE JOHNSON: Well, I actually started protesting the MDA, that’s the Jerry Lewis telethon, when I was a self-employed attorney and felt free. But as a child, I had been made very, very uncomfortable every year by that telethon and the others, which have mostly died out. And the reason was that the telethons made their money by parading children forward as objects of pity. It depicted us as people who needed to be cured, who were not good enough the way we were. And in particular the MDA telethon had the added spin, “cure them, help them before it’s too late. Their lives are ebbing away even as we speak.” And it was a very uncomfortable message and very hard to live a life and be taken seriously as a worker. If you wanted, you know, a car loan, anything, you really couldn’t afford for people to be thinking you were going to die any minute now. And so, you know, as I, I really expected growing up to die a teenager.
JOAN RINGELHEIM: Right.
HARRIET MCBRYDE JOHNSON: I absolutely expected that, and when it didn’t happen to me and it didn’t happen to some of my friends, it did happen to others, but not to all. And I realized that it was possible to live enough youth to do something. I really felt it was important to let people know that; that the telethon message was not only discomforting, not only insulting, but on many levels it was false.
JOAN RINGELHEIM: Can we talk about cure?
HARRIET MCBRYDE JOHNSON: Okay.
JOAN RINGELHEIM: I would think that most people who, in the audience, who are not disabled would say there’s something important about medicine developing cures for certain diseases. Do you think that’s true?
HARRIET MCBRYDE JOHNSON: I have no interest at all in a cure for my disease. And there again, the community is by no means monolithic. Christopher Reeve really and truly cared deeply about cure. He was sincere. Nobody was forcing him to do the work that he did and that’s legitimate. That came from his experience. But to me, my disability is, I mean, it is part of my DNA. It’s in every, every, will you say molecule of me? I don’t know enough about the biology. But, you know, at the tiniest level, the disability is part of who I am. And, you know, I really have no interest in changing that. It seems to be much more interesting to figure out what to do with this kind of body and this kind of life. Now, when my mother got breast cancer, I was very glad that there were some good treatments for her, and maybe that doesn’t make sense. But maybe it does. I don’t know. Does that make sense? [laughter]. Anybody? [laughter]
JOAN RINGELHEIM: Are you different about other people than yourself? This is what...
HARRIET MCBRYDE JOHNSON: No, I’m that way about my disability and I have got friends who have it. I don’t want to cure them either. I like them the way they are. And they would not be the same people without it.
JOAN RINGELHEIM: Right.
HARRIET MCBRYDE JOHNSON: be like other people, you know, and not near as...
JOAN RINGELHEIM: So are there other advantages to having a disability?
HARRIET MCBRYDE JOHNSON: Well, not innately, I mean I think it’s a lot like gender. Yeah, you can make a list. There are advantages and disadvantages, being a mother versus being a father. But I don’t think most of us would say one is inherently better than the other overall. It’s just one of the determinants of your life’s path that has some biological limits and also cultural ramifications.
JOAN RINGELHEIM: All right. Let’s take the other one. Are there advantages to not having disabilities?
HARRIET MCBRYDE JOHNSON: It would be nice to be able to ride DC Metro, even when the elevators are broken. [laughter].
JOAN RINGELHEIM: So let me ask you, when you think about this question of cure and what you saw in Deadly Medicine...
HARRIET MCBRYDE JOHNSON: Yeah.
JOAN RINGELHEIM: Were the Nazis interested in curing society in a way different or similar from the ways in which you see the medical profession and public policy now wishing to cure disease? Or even cure disability?
HARRIET MCBRYDE JOHNSON: Yeah. Well, of course when we talk about cure, we’re usually talking about changing the individual rather than exterminating the individual. And that’s certainly a very, very big difference. But, you know, I, one other thing that was in the exhibit, there was a poster from the United States, I think from Kansas, where a prize had been given, maybe at a state fair for the “fittest family” that, you know, biologically, as in survival of the fittest, and it was this family of healthy blond farmers and I look at that and say my family wouldn’t qualify really a couple of different ways but largely because of me. So I think the starting point is not that different. Our society and their society starts with the notion that people like me are not the way people should be. We are not the kind of people who are wanted and who are valued. Jerry Lewis once called the disabled children or children with muscular dystrophies “mistakes who came out wrong.” And that I think is pretty, exactly the attitude behind Deadly Medicine, “mistakes who came out wrong.” And he would say raise a truckload of money to do research, to cure. A lot of their research does also go to genetic counseling and various ways of preventing births of people like me. So that part of it’s alive and well. But this whole notion that we are mistakes, that we are not what is wanted is there. And even if people refrain from rounding you up and gassing you or forcibly sterilizing you, it’s a very uncomfortable world to live in, knowing that you’re not what people want.
JOAN RINGELHEIM: But you would make a difference, I’m assuming, I’m not sure it’s a difference that matters. So that is what I want to ask you. Is there a difference between an individual woman deciding that she wants to not have a child with x disability, whichever you’re talking about, whatever disease, and the state deciding to compulsorily sterilize people who have certain disabilities or to forcibly make women abort babies, or further, to kill the women who might have whatever?
HARRIET MCBRYDE JOHNSON: I think all those things are tremendously different, one from another. And I think to me as a lawyer I do make a big division between what the law is and what may be moral. And I think it’s very important to keep the law disability-neutral to say, well, we’re not going to, we’re not going to give people abortion permits if they have got a genetic condition and deny abortion to others. That our law invests the decision in the individual and that’s important. Because as a society on that side, we’re not validating those choices. We’re not coming together in the code book and saying those people are undesirable, we don’t want them. If I were able to pick, you know, the world I would like to live in, the law would be that women have the right to choose to terminate a pregnancy if they don’t want to have a baby at all. I would make that their right absolutely. But once they decide they want to have a child, I would say don’t discriminate based on eye color, based on gender, based on disability. Part of becoming a parent is knowing that you never know what you’re going to get. But having said that, I’m not in charge of the law and it’s good that I’m not. [laughter].
You know, I think that in our society where we are now the best we can do is to say the technology exists. It’s available, and people need to make their own moral decisions about what to do with it.
JOAN RINGELHEIM: If you had control of the law, would you make it illegal for a woman or a man and a woman to decide not to have a baby if the fetus had a disability, do you think?
HARRIET MCBRYDE JOHNSON: I think where I draw the line is if they decide not to have the baby at all, that’s up to them. But if they decide they want to have a baby, I think they’re not ready to be parents unless they accept the idea that they don’t know what they’re going to get and they may get one that’s genetically perfect and becomes a criminal, a drug addict, whatever, that the unpredictability is part of the process and part of what you ought to accept. But again, I don’t make the law, and that’s good for everyone.
JOAN RINGELHEIM: Do you think that scientists and doctors wish to be able in these genome projects to predict, this is what they’re looking for, so that they can predict exactly what kind of a baby’s going to emerge?
HARRIET MCBRYDE JOHNSON: Well, I mean, I really only know what I read in the popular press and that’s often ballyhooed, that, you know, we will know in advance the causes of diseases. We will be able to prevent by various means, and we are doing a lot of that already. And it’s being pretty effective and that does bother me. I think, I think that there will be a loss to the world if we don’t have any more people with down syndrome or any more people with spina bifida or anymore people with neuromuscular diseases like mine. But I do take comfort in the belief that mutants will always happen.
JOAN RINGELHEIM: No matter what?
HARRIET MCBRYDE JOHNSON: They won’t be able to pull it off. [laughter]. Yeah. Yeah. Yeah.
JOAN RINGELHEIM: Unfortunately, we’re coming close to the time when I have to stop, which I can’t believe. And we have cards for people. I don’t know whether you, I think you got them when you came in, so you can write down. We’ll take five or 10 minutes for people who need assistance with having the questions written down, please raise your hand or speak out and there will be a bunch of people coming by so they can write out the questions. And I suppose we can keep talking while you’re doing that.
HARRIET MCBRYDE JOHNSON: Why not?
JOAN RINGELHEIM: Do you think gender is an issue for the disability community?
HARRIET MCBRYDE JOHNSON: It’s an issue for absolutely everybody. [microphone noise] And all of those other divisions -- race, class, gender, economy, economic levels, region, whether you’re a southerner or not -- we’re a part of all that. We’re a part of that whole tissue, and the whole area of sexuality has been really problematic for all kinds of disabilities, partly because of eugenic concerns.
JOAN RINGELHEIM: Right.
HARRIET MCBRYDE JOHNSON: You know, depending on the disability, if it’s a hereditary one, we’re discouraged from becoming parents. But just the general notion that we’re often presumed to be incompetent in all areas of life, those of us who were born with disabilities are often expected to be perpetual children and having an adult sexuality is taboo. The non-disabled world doesn’t quite know what to do about it. And that’s been an important part of what the movement has done, has been to help us tell the truth about our sexuality, the issues and, you know, to let people know that there are lots and lots of disabled parents and they’re doing good jobs and bad jobs like other parents.
JOAN RINGELHEIM: Right. And I read an article recently of the large number of sexual abuses against women with disabilities.
HARRIET MCBRYDE JOHNSON: Yeah.
JOAN RINGELHEIM: Is that true? I mean, I couldn’t actually go back to the original research. But is there a problem?
HARRIET MCBRYDE JOHNSON: Sure. I mean, abuse of all kinds. You’re talking about a very powerless population.
JOAN RINGELHEIM: Right.
HARRIET MCBRYDE JOHNSON: And the disability itself can be disempowering. But typically you add to that poverty, isolation, dependence, lack of resources, often confinement in institutions. I am able to protect myself from abuse largely because I have money in the bank. I can hire and fire the people who give me care. But most of our folks are dependent on somebody or other that they have not chosen and that imbalance of power is really a recipe for every kind of abuse that there is.
JOAN RINGELHEIM: Is there more that you want to say about institutionalization, given what you saw in the exhibition? And I know in your book you talk very much about being frightened for yourself.
HARRIET MCBRYDE JOHNSON: Yeah. Well, in another article I did for the New York Times, I talked about the “disability gulag,” and I expected to hear from a lot survivors of the Soviet gulag, and I didn’t, using that metaphor. To me, of course there are similarities and differences. But I think it’s important that we start thinking about the very existence of institutions as a human rights violation that we’re ignoring because they were created not to help us, not to rehabilitate us, but to isolate us. That was their function. And over the years, nowadays they are called training homes, they are called by a variety of names, nursing homes I guess are the biggest part of it now. But really what they’re about is isolation and control. And I think that we need to look at that and to understand that nobody should ever have to be confined to a place where they have no freedom because they need help. Places like that are for people who need control. And in our society we have forgotten that it’s possible to give people assistance, care, all of that, in other settings. We just don’t know that that’s possible. And particularly with the aging population. I had a friend who is an old socialist, you know, on the barricades, fighting for freedom, and she told me one time, she says, “I don’t want to live past my ability to take care of myself because I don’t want to go in a nursing home.” And I said, “wait a minute. That’s not the way it is. Why don’t we fight to get someone to take care of you physically?” People don’t recognize that.
JOAN RINGELHEIM: Can I read from your book?
HARRIET MCBRYDE JOHNSON: Sure.
JOAN RINGELHEIM: I wanted to read something because I’m just a smidgen less embarrassed when I was when I went to Auschwitz in 1989, because doing this program has forced me to look at a lot that I think I didn’t want to look at anymore than a lot of people. And this was a very important piece of Ms. Johnson’s book:
“How is it possible that non-disabled people tend to feel sorry for me? It still takes me by surprise. The widespread assumption that disability means suffering feeds a fear of difference and a social order that doesn’t know what to do with us if it can’t make us fit its idea of normal. When we seek what we need to live good lives as we are, we come against the wall -- why bother? -- the thinking runs, all they can do is suffer. When non-disabled people start learning about disability, which seems most startling, most difficult to grasp, is the possibility of pleasure. For decades, little noticed by the larger world the disability rights movement has been mobilizing people to speak plainly about our needs. We make demands, we litigate, run for office, seize the streets, sit through the meetings, mark up the drafts, the kinds of work that has changed the world and we need to continue it. We need to confront the life-killing stereotype that says we’re all about suffering. We need to bear witness to our pleasures. I’m talking in part about the pleasures we share with non-disabled people. But I’m also talking about those pleasures that are peculiarly our own, that are so bound up with our disabilities that we wouldn’t experience them and wouldn’t experience them the same way without our disabilities.”
So I would like to thank you so very much for being here and being who you are.
HARRIET MCBRYDE JOHNSON: Thank you. It’s been an honor to be with you. [applause].
Joan Ringelheim, the Director of Oral History at the US Holocaust Memorial Museum interviewed renowned author, advocate, and attorney Harriet McBryde Johnson. Johnson brought a disability rights perspective to bear on issues raised by the Museum's Deadly Medicine exhibition.