No Business Like Show Business

ED AYERS: This is BackStory. I’m Ed Ayers.

NEWS ANNOUNCER: For three days, students have shut down the campus, boycotted classes, and burned effigies…

ED AYERS: This was the scene at Gallaudet University in 1988. The nation’s only university for the deaf and hard of hearing had operated for more than a century without a president who was one of their own, so students demanded one.

I. KING JORDAN: It changed not just the way hearing people saw deaf people. It changed the way deaf people feel about ourselves.

ED AYERS: Americans with disabilities have long fought for their own voice, while others have tried to speak for them. A hundred years ago, disability reformers tried to suppress sign language. Today on BackStory: physical disability in America, from restrictive 19th century immigration laws to the long fight for freedom.

DEA BOSTER: There are many examples of slaves who could utilize disability—either genuine, feigned, or exaggerated—to achieve their own ends.

ED AYERS: Coming up on BackStory: a history of Americans with disabilities.

PETER ONUF: Major funding for BackStory is provided by an anonymous donor, the National Endowment for the Humanities, the Joseph and Robert Cornell Memorial Foundation, and the Arthur Vining Davis Foundations.

[MUSIC]

ED AYERS: From the Virginia Foundation for the Humanities, this is BackStory… with the American Backstory hosts.

BRIAN BALOGH: Welcome to the show. I’m Brian Balogh, and I’m here with Ed Ayers.

ED AYERS: Hello, Brian.

BRIAN BALOGH: And Peter Onuf’s with us.

PETER ONUF: Hey, Brian. We’re going to start today’s show with a story of two sisters, Millie and Christine McKoy. They were born into slavery at a North Carolina plantation in 1851.

JENIFER BARCLAY: And right away, their owner recognized that they were an interesting sort of spectacle.

[MUSIC PLAYING]

PETER ONUF: This is Jenifer Barclay, a historian at Washington State University.

JENIFER BARCLAY: And the twins, from a very early age, began to be exhibited in different ways throughout the southern states.

PETER ONUF: Millie and Christine were born conjoined at the hip, and, like hundreds of other 19th century Americans with disabilities, the twins made their living by exhibiting their bodies in sideshows, or, more crudely, “freak shows.”

JENIFER BARCLAY: These would have been folks with unusual bodies, perhaps amputees, folks missing limbs, or folks who were considered to be giants, or folks who were considered to be midgets. So, just a whole diverse array of people.

PETER ONUF: Barclay says that, in the case of the McKoy sisters, while the twins’ extraordinary bodies got them on the stage, it was their performance as the two-headed nightingale that astounded audiences.

JENIFER BARCLAY: Performing dance routines that were choreographed whilst they sang. They were both multi-lingual so, as part of their performance, one would carry on a conversation in, say, French, and the other would carry on a conversation in German.

PETER ONUF: The McKoys’ act paid off. By the time they retired from the stage in their 30s, the twins had made enough money to live comfortably and buy a farm for their parents. They even founded a school for black children in their home state. But the McKoys’ use of their disability as a source of financial independence is hardly unique.

MAT FRASER: I think the agency that maybe disabled people got in those days was the fact that they were fiscally independent, and that they had a group of equals.

PETER ONUF: This is Mat Fraser. You might recognize him from the TV show American Horror Story: Freak Show. He’s an actor and sideshow performer who integrates a congenital deformation in his arms into a show. Fraser’s done a lot of research into his profession and says that, like the McKoy sisters, many 19th century sideshow performers leveraged their disabilities for a better life.

MAT FRASER: And I think that was more the agency because the alternative of being—I’m going to use phrases of yesteryear here—the school cripple or whatever you get numbered as identity-wise, could often be improved by going on the road and being a fabulous freak and an exotic that people desired and wanted to know more about.

PETER ONUF: But both Barclay and Fraser stress that this agency is easy to romanticize. In the 19th century, sideshow performers with disabilities still regularly faced exploitation at the hands of showmen like P.T. Barnum.

[MUSIC]

PETER ONUF: In the Millie and Christine McKoy’s case, they were forced to undergo invasive medical examinations to prove they were “real” freaks, and even the very presence of gawking onlookers complicated any financial success. Barclay says in the 1830s and ’40s, sideshow audiences weren’t exactly looking to celebrate diversity.

JENIFER BARCLAY: Antebellum America, when these kinds of productions first emerged, was a time of tremendous change and upheaval. Industrialization, things like abolition, I think, in many ways, were anxieties that spectacles like freak shows helped to give folks a place where they could sort of test their own normalcy.

PETER ONUF: In other words, the audiences used performers’ disabilities to feel normal. Mat Fraser says these dual strands of agency and exploitation are ever-present in sideshow history.

MAT FRASER: Where is the line between being a self-respecting, fiscally-independent, treated-as-an-equal performer that celebrates their beautiful difference to the hideous notion of people coming to gawk at someone’s deformity because they can’t do anything else because society won’t let them work, which is the other side of the coin?

[MUSIC]

ED AYERS: But this tension isn’t just confined to sideshows. It runs through lots of history of disability in America. Able-bodied Americans have often projected their fears, anxieties and stereotypes onto their fellow citizens with disabilities, many of whom, in turn, have worked to find their own means of social and civic mobility.

BRIAN BALOGH: Today on the show, a history of physical disability in America. We’ll explore how enslaved people used fear of disability to their advantage and find out why Alexander Graham Bell fought against the use of sign language within the deaf community. We’ll also hear from voices of protest in the 20th century fight for disability civil rights.

ED AYERS: But, first, let’s take a look at how views of disability have shaped who has been granted access to the U.S. in the first place. Since the founding, politicians have used the term “able-bodied” to define civic participation. By the 1880s, lawmakers begin to focus on those coming into the country.

In 1882, federal immigration law barred anyone who was a “convict, lunatic, idiot, or any person unable to take care of him or herself without becoming a public charge” from entering the country. That list included children and adults with any number of physical disabilities or perceived defects.

DOUG BAYNTON: The list would include varicose veins, flat feet, hearing impairment, vision impairments, short stature, poor physique.

ED AYERS: This is University of Iowa historian Douglas Baynton. He says it’s hard to tell exactly how many immigrants with disabilities were kept out of the U.S. For one thing, discrimination didn’t begin at Ellis Island.

DOUG BAYNTON: Because the shipping companies did their own inspections, because if they brought an immigrant over who was rejected, they would have to pay a fine for that person, and they would have to bring them back at no charge. The ticket sellers, the ticket agents, who were spread all over Europe, also did their own inspections. These were non-medical people, but they would refuse to sell tickets to people who they thought would be excluded, because they would be penalized by the shipping companies.

ED AYERS: And what this suggests to me is that people with really debilitating disabilities might not have made it this far.

DOUG BAYNTON: Oh, that’s right, yeah. Well, they wouldn’t have gotten through the initial screens, and also if they had a mobility impairment, they wouldn’t be able to get on the ship in the first place.

ED AYERS: Right, right. So, can you give me an example of what this process actually looked like in practice, these officials deciding sort of on the spur of the moment that somebody was defective?

DOUG BAYNTON: There was an Armenian Turk in 1905 by the name of Donabet Mousekian who was diagnosed as suffering from feminism. That was the term that was used on his medical certificate, and it referred to a lack of male sexual organs or underdeveloped organs as a result of what we now know to be a hormonal deficiency.

ED AYERS: I mean, how would they know that? It must have been from a facial trait?

DOUG BAYNTON: Yes.

ED AYERS: Because I know from reading your article that, basically, people are walking by and when they see somebody who seems defective, they write an “L” on their back. Is that right?

DOUG BAYNTON: Right, there was a whole code for different kinds of defects. So, “X” for mental defect, “L” for lame.

So, the first inspection was really just a snapshot diagnosis as immigrants streamed past the inspectors, and they would pull some people out, chalk on their back, and then give them a closer inspection.

So, with Mousekian, his hearing was extraordinarily brief. It was as if the board that was examining him was very uncomfortable, and, this case, one of them said, “I move to exclude as likely to become a public charge.” Second panel member said, “I second the motion,” and a third said, “He is excluded.”

ED AYERS: Oh, wow.

DOUG BAYNTON: And that was the entire hearing. But he appealed to Washington, which all immigrants had the right to do, and he wrote in his appeal that he had always supported himself. He was a photographer, a weaver and dyer of rugs, and a cook, had worked at all of these.

And he wrote in his letter, “I am not ill and have no contagious disease. This is not my fault. It has come from God and my mother. What harm can I do by being deprived of male organs?”

When he left, he was fleeing the violent oppression of Armenians in Turkey, and had been made to renounce his citizenship when he left. So, he explained this in his letter, and he said, “Better that you should kill me now than send me back,” and the Armenian genocide took place just a few years after he was sent back.

ED AYERS: Wow.

ED AYERS: So much of this focused around not being able to find work.

DOUG BAYNTON: [Yes].

ED AYERS: What kind of evidence would they have of that? Was that actually true, do you think?

DOUG BAYNTON: That’s the thing. There is a widespread assumption that a disability means being incapable of working. So, in the case of Mousekian, there really seems to be no reason to assume he wouldn’t be able to find work. But there was an immigration service memo that explained why they should not be admitted, which was that their abnormality becomes known to their fellow workers, who mock them and taunt them, which impedes the work—

ED AYERS: [laughs]

DOUG BAYNTON: —at hand, and so employers know this and are unlikely to hire them.

ED AYERS: So, it’s for their own good in many ways? [laughs]

DOUG BAYNTON: Yeah, right. So, basically, it was saying that, “We have to discriminate against them now because they’re likely to encounter discrimination later.”

ED AYERS: So, you say that these restrictions grew over time. Does that mean that they grew increasingly accepted? Was there a sort of turn against people with disabilities at the beginning of the 20th century, or was this just sort of a more bureaucratic momentum that built?

DOUG BAYNTON: Well, I think there are a couple of things going on. One, the eugenics movement definitely grew. And it was not just in the negative sense, of preventing defectives from giving birth, but encouraging people who considered to be superior to have more children.

So, sterilization was one way of preventing the proliferation of “defective” people. The other main track that eugenicists took was to prevent defective people from coming into the country. They would argue that all of our sterilizing and institutionalizing of people is not going to do any good if we’re just being swamped with defective people from the outside.

ED AYERS: So, this just seems to be running contrary to what we think of as the currents of sensibility and progress. We think of abolitionism, and feminism, and a general sensitivity to the suffering of animals, and everything… seems to be flourishing in the 19th century. Why would people with disabilities seem to be exceptions to that general trend?

DOUG BAYNTON: Well, I think there are a lot of different factors. One of them is this standardization of society in the industrial age. The term “normal” comes into common use near the end of the 19th century, and it becomes a very powerful concept. People used to talk about human nature, and then it shifted around the turn of the 20th century to a concern with what is normal: counting people, measuring people, seeing what the bell curve shows us about what are normal characteristics.

And it’s tied in with a lot of changes: the growth of cities, industrialization where not only do you need standardized parts and replaceable parts, but standardized and replaceable human beings, workers. People with disabilities don’t fit as a cog in that larger machine.

ED AYERS: So, how long were these laws on the books? You say they sort of peak in the early 20th century. Then what happened?

DOUG BAYNTON: The immigration laws do not take out the language having to do with specific disabilities or defects that are excludable until the 1990 Act, and still today we exclude people who are likely to become a public charge, and that’s still a means of keeping people out with disabilities. So, it still goes on.

[MUSIC]

ED AYERS: Douglas Baynton is a historian at the University of Iowa and author of the forthcoming book Defectives in the Land: Disability and Immigration in the Age of Eugenics.

Earlier, we heard from historian Jenifer Barclay at Washington State University, and actor and performer Mat Fraser.

PETER ONUF: It’s time to take a short break. When we get back, Alexander Graham Bell thought the biggest threat to America’s deaf community was sign language.

BRIAN BALOGH: You’re listening to BackStory.

BRIAN BALOGH: We just heard about the laws in the 19th century that targeted disability among immigrants, but attitudes at that time affected plenty of Americans, as well. Our story starts with Alexander Graham Bell, who we all know as a hero for his invention of the telephone in 1876, but Bell was also one of the most influential figures in the field of deaf education. He had a deep personal connection to the issue. Both his mother and his wife were deaf.

BRIAN GREENWALD: But the signing deaf community has viewed Bell as a villain.

BRIAN BALOGH: This is Brian Greenwald, a historian at Gallaudet University. I spoke to him through a sign language interpreter. Greenwald says that in the late 19th century, Bell used his fame to try to eradicate sign language, which he viewed as primitive. Bell was one of the more prominent activists who promoted a different form of communication for the deaf, known as oralism.

BRIAN GREENWALD: Oralism is a pedagogical approach to teaching deaf children, which relies on teaching them speech training, lip reading, and eliminating the use of sign language, the idea being that deaf children would be recast as hearing, speaking people.

BRIAN BALOGH: Why did Bell think that oralism was more advanced, or why did he think that American Sign Language was more primitive?

BRIAN GREENWALD: This is an era when sign became viewed as atavistic, backwards thinking. That it was a bumbling use of gesture to convey information in a way that wasn’t a good fit for human nature, as it was seen.

In terms of evolutionary thinking of the day, people regarded sign, and those who used sign, as being somewhat closer to the use of gesture among, say, monkeys, and the idea being that if you could not speak, you could not think, and were not human.

So, for Bell, working to eliminate sign language, I think, was really a kind of reform, as he saw it. A progressive reform.

BRIAN BALOGH: Greenwald told me that in the late 19th century, there were several dozen boarding schools for the deaf where students were taught sign language. The schools, and signing, had created the beginnings of Deaf culture.

BRIAN GREENWALD: My belief is that Bell saw oralism as a social and educational pressure that could be applied to deaf people so that they would leave that cultural community, because he thought that deaf people should not be marrying other deaf people.

BRIAN BALOGH: Why? Bell was a eugenicist.

BRIAN GREENWALD: Bell was very, very much so worried that if deaf people continued to marry among other deaf people then there would be, at some point, a new variety of the human race that would be deaf. But we know today that that theory doesn’t hold true.

But the overarching goal for Bell was to reduce the number of deaf people in existence. Now, the way to reduce those numbers of deaf people, he thought, and his argument was through oralism as a tool for assimilation.

BRIAN BALOGH: Was there anybody who pushed back against Bell in order to defend that culture?

BRIAN GREENWALD: Oh, yes. Oh, yes, very much so, even within the schools for the deaf where sign language was forbidden or not used. Those deaf students would spontaneously sign on the sly, and if the teacher had their back turned to write on the board at any moment, the students were communicating with each other using signs and doing so in the dormitories, as well.

Other acts of resistance—and really a very important one to remember—is that when those deaf children graduated from those schools, they continued to gather in deaf communities within churches, within deaf clubs, within different organizations, and the number of deaf-related organizations on local, state, and national levels are astounding.

But oralists were like a tidal wave in that era that just swept across the United States, and part of the problem was that the oralists had never asked deaf adults—

BRIAN BALOGH: [laughs]

BRIAN GREENWALD: —about their own [laughs] experiences, and so deaf children of that day, and still today, continue to get the short end of the educational experience.

[MUSIC]

BRIAN BALOGH: Brian Greenwald is a historian at Gallaudet University.

Despite efforts to suppress signing, the language thrived throughout the 20th century, largely through those methods of resistance Greenwald mentioned. Schools today teach American Sign Language, lip reading, and speech.

[MUSIC]

ED AYERS: You know, guys, I noticed from those interviews with Douglas Baynton and Brian Greenwald how in the 19th century reformers categorized and labeled and institutionalized people with disabilities, and now, obviously, these reformers had good intentions, but it seems to me that something was lost from earlier times. So, Peter, what was gained and lost from the 18th century to the 19th century world in which people were institutionalized?

PETER ONUF: Well, in a way your question says it all, Ed. There aren’t institutions, and everything that’s done [laughs] in terms of social welfare has to be done literally at home or in your hometown or village.

ED AYERS: That sounds good.

PETER ONUF: It is good in the sense that you have a place. Whatever you’re born with, however you’re born, whatever marks you as different is accepted. One of the reasons it can be accepted is that 18th century society, even in British America, is hierarchical. There is a culture of caring because without that care people can’t survive, and the survival—

ED AYERS: It’s kind of a culture of responsibility, right?

PETER ONUF: Yeah, exactly. You know that phrase about “it takes a village” to do this, that, and the other thing, and that begins with taking care of small children and anybody who needs help.

BRIAN BALOGH: Peter, did it matter that so many people in the, let’s say, late 18th century worked in the home?

PETER ONUF: Yeah, Brian, I think that’s a great point. We think of work as an activity that we’re slotted into once we join the labor force.

BRIAN BALOGH: Right, you commute off to work.

PETER ONUF: But let’s just say you can’t go out into the fields anymore. Well, there’s something for you to do in a household economy. [laughs]

BRIAN BALOGH: There’s plenty to do.

PETER ONUF: Right, there is plenty to do, whether it’s child care, whether it’s food preparation, whether it’s simply watching the world go by and reporting on that to your neighbors, you’re a part of an organism, of a community.

ED AYERS: So, wasn’t that better?

PETER ONUF: Yeah, that’s better, Ed, but what’s not better is the sense that your destiny is fixed with those marks at birth, whatever it is that distinguishes you, and the whole [laughs] range of things that we now call disabilities—mental, physical, whether they happened as a result of an accident and you’re “dis-abled”—all of those things lead to a fixed and permanent outcome.

That idea that you cannot pursue happiness—and we understand happiness to be the aspiration to be a full and complete human being—because you happen to be in this category, then it’s different being disabled. Then, to be disabled is not to participate.

BRIAN BALOGH: Peter, were the categories of what today we call disabilities, were they the same back then, or are these inventions of the 19th century, or the 20th century?

PETER ONUF: Well, I think they are largely inventions of the 19th and 20th century, and part of that is based on the idea that you can do something for somebody with what we call a disability, you can enable that person, whereas I think in the 18th century you are what you seem to be. I mean, if you can’t do something, you can’t do it. There’s no probing question because there’s no hope that the diagnosis is going to lead to any kind of outcome.

BRIAN BALOGH: That’s what strikes me as different from my 20th century purchase: the presumption shifts to being whole, enabled, fully entitled citizens with certain barriers. You might even think about those curb cuts that we have today. If you can only put cuts in the sidewalk, they can function like anybody else, and that seems very different than your period.

PETER ONUF: And I think the neologism “ableism” suggesting prejudice against those people with disabilities that is that they can’t overcome the effects of those disabilities, and an ableist is simply going to consign those people to the fate of not being able to participate. Well, that would be to return to the 18th century.

[MUSIC]

BRIAN BALOGH: We’re going to leap forward now, to the late 20th century, in a watershed event for the deaf community.

GALLAUDET UNIVERSITY OFFICIAL: We picked Dr. Elizabeth Ann Zinser as establishment president of Gallaudet [protesting in the background]. It was because…

BRIAN BALOGH: It was March 1988. Officials at Gallaudet University had just announced the appointment of a new president. Students at Gallaudet, the nation’s only college for the deaf and hard of hearing, were outraged. They began a campaign called “Deaf President Now.”

[PROTESTING]

NEWS ANNOUNCER: There’s never been anything like it at Gallaudet. For three days, students have shut down the campus and burned effigies after their board of trustees…

BRIAN BALOGH: Zinser didn’t even know sign language.

I. KING JORDAN: Truth be told, I was shocked.

BRIAN BALOGH: [laughs]

I. KING JORDAN: I thought I had the job.

BRIAN BALOGH: This is I. King Jordan. In 1988, he was a dean at Gallaudet and one of the candidates for the presidency. Jordan lost his hearing in a motorcycle accident when he was 21. We spoke to him through a sign language interpreter.

He says that students had been telling the board that it was time for Gallaudet, founded 124 years before, to have a deaf leader.

I. KING JORDAN: But the board didn’t take that message to heart, apparently. There’s a famous quote where the chairmen of the board says, “It’s not time for a deaf president. Deaf people are not ready to be president yet.”

BRIAN BALOGH: Well, do you want to tell us what was going on?

I. KING JORDAN: I can tell you what went on from my perspective.

BRIAN BALOGH: Yes!

I. KING JORDAN: I was at home, and it was Sunday, March 6th. And I was home in the evening, and somebody called my home. And my wife answered the phone, and whoever called—I can’t remember who it was now—said, “Turn on the news. You want to see what’s going on.”

So, she turned on the news, and there was live coverage of what was going on at Gallaudet, and the students were really in an uproar, and it was then that I learned that they had appointed Dr. Zinser.

So, I went into campus on Monday. I drove in, and I couldn’t drive on the campus, so I parked nearby, and I couldn’t walk onto campus. All of the students closed down the campus, and they wouldn’t let me on. And they had closed the gates. They had actually hotwired a couple of the school buses.

BRIAN BALOGH: [laughs]

I. KING JORDAN: And drove the school buses in front of the gates and deflated the tires, so it wasn’t going to be very easy to get onto campus.

BRIAN BALOGH: So, how did you react when you saw these protests? Were you with the students? Did your administrator sensibilities kick in and say, “Oh, my goodness, this is bad for publicity?”

I. KING JORDAN: I think both one and two are the way I reacted.

BRIAN BALOGH: [laughs] Yeah.

I. KING JORDAN: I thought what the students did was understandable and correct, and, at the same time, I was a dean, so I had the tension between those two different positions.

One thing, if you’ve done your homework, that you probably know is on Wednesday at the National Press Club, I stood up in front of a group of reporters and cameras, and then I was asked, “Do you support what the board of trustees is saying here?” And, to my regret, I said, “Yes, I do. It’s a board decision” [laughs].

While I was doing that, there was a crew there from a TV program called Deaf Mosaic from Gallaudet’s TV department, and the camera man and the producer who were there were both deaf. And when I looked back at the producer, who was a young woman who was a good friend of mine and someone who I liked and who I knew liked me, she was looking at me, and she was shaking her head.

BRIAN BALOGH: [laughs]

I. KING JORDAN: And she was crying.

BRIAN BALOGH: Oh.

I. KING JORDAN: She didn’t sign anything. She just mouthed, “No. No,” and I said, “OK, I’m dean, and I’m also deaf. And I’m going to be deaf for the rest of my life, and I’m going to be dean for as long as I keep the provost happy. So, I really have to…I have to change my position somehow.”

NEWS ANNOUNCER: [from the recording of a news segment] Now they’ve become even stronger…

[PROTESTING]

I. KING JORDAN: And the next day, I went to campus.

I. KING JORDAN: [from the recording of a news segment] Yesterday, because I had been a candidate and wanted to be both reasonable and fair, I gave a statement recognizing the legal authority of the board to name the president of Gallaudet University. In fact, my personal reaction to the board’s decision was and is anger. Anger at the continued lack of…

[CHEERING]

I. KING JORDAN: I said, “I fully support the action that the students have taken, the notion that the next president should be a deaf person, and I stand with you.”

I. KING JORDAN: [from the recording of a news segment] I must now publicly affirm my support for the point of view held by the Gallaudet community.

I. KING JORDAN: And while I was signing that, I knew that I was shooting myself in the foot. I thought, “Ain’t no way I will ever become president now. I mean, not now, not later. They’re going to have to appoint somebody because Zinser can’t weather this storm. I know that. But given the way I stood up and did this, they’re never going to appoint me.”

BRIAN BALOGH: Right.

I. KING JORDAN: That was Thursday. On Friday, Zinser resigned, and the short of it is that I got a telephone call on Sunday telling me that the board had appointed me president. So, we went to the Mayflower Hotel where the board had been staying. And the Mayflower, when they announced a press conference, word got out, and so all the students came there.

[CHEERING]

I. KING JORDAN: I mean, hundreds and hundreds and hundreds of students came. And I remember a short written statement that I had. I wanted to be very careful of what I said.

I. KING JORDAN: [from the recording of a news segment] And I must give the highest praise to the students of Gallaudet for showing us exactly, even now, how one can seize an idea with such force that it becomes a reality.

[CHEERING]

I. KING JORDAN: And I pronounced “reality” [laughs] like real estate, “an idea becomes realty,” and my wife gave me an elbow.

BRIAN BALOGH: [laughs] King, what impact do you think this event had on the deaf community?

I. KING JORDAN: Oh, wow, it’s almost impossible to measure. I think about halfway—well, no, not halfway through the week. Actually, it was probably toward the end of the week, I realized that it was not really a protest anymore, that it was really a revolution. That the deaf community would never be the same. That the view of and understanding of and perception of deaf people would never be the same.

It began as a student protest, but it really became a revolution about the rights and abilities of people who were deaf, and a cry for the recognition of people who can hear of those abilities and rights. And there was a buzz phrase that I had when I was president, and that was, “Deaf people can do everything except hear,” and I believe that with all my heart.

BRIAN BALOGH: King, I can’t tell you what a pleasure it’s been to talk to you today. Thank you so much for joining us on BackStory.

I. KING JORDAN: Thank you. It’s really been a pleasure for me.

[MUSIC]

BRIAN BALOGH: I. King Jordan is president emeritus of Gallaudet University.

[MUSIC]

ED AYERS: In the 19th century, epilepsy was considered a serious disability, and it was thought to be especially prevalent among enslaved people, but if we dig a little bit deeper, the historical record shows a more complicated story.

DEA BOSTER: I have read accounts of slaves who admitted having feigned seizures in a variety of ways—choking, frothing at the mouth, convulsing—and some who claimed that they had witnessed such fits in other people, and they knew how to mimic them.

ED AYERS: This is historian Dea Boster. She says that white slave owners were terrified of epilepsy, which helps explain why slaves found ways to use those fears to their own advantage.

Slavery, of course, was itself a violent, disabling system with backbreaking work, beatings and medical neglect, but the hidden history Boster uncovers shows that even able-bodied slaves exploited white anxieties about disability. Boster tells a story of a child whose seizures saved her from a terrible fate.

DEA BOSTER: In 1843, a 15-year-old female slave in Richmond, Virginia, named Virginia, was found guilty for the crime of arson, which for slaves was a capital offense, and she was sentenced to hang. But her master, a man named Archibald Govan, appealed to the governor for clemency, and he was able to convince the governor to have her sentence commuted. So, instead of being executed, Virginia was supposed to be sold.

And, on the day that Govan picked her up at the city jail to transport her to slave trader Bacon Tait’s jail, she experienced what Govan described as an epileptic fit. There’s nothing to indicate she had a history of it, but she had such fits, or episodes, regularly for almost two months before both the slave trader and a physician he had hired threw up their hands and said, “We can’t sell her. She has no value. You have to take her home.”

So, a slave, a young girl, who had been found guilty in a Richmond court of a capital crime—was sentenced to die—was saved. Her life was saved. She wasn’t sold. She was returned to her family.

ED AYERS: How would they know that she had epilepsy?

DEA BOSTER: Well, that’s a very good question. It was a not a very well understood disease category at the time, and they never exactly explained in any of the correspondence I read what the fits actually looked like. They just used the word “epileptic.”

ED AYERS: Yeah, we can’t know what really happened, but we can’t help but be struck by this seemed very advantageous to her for those fits to strike her when they did. So, where there other times that you know of that people were able to use disability or feigned disability to their advantage?

DEA BOSTER: Oh, absolutely, in a variety of instances. I mean, when you think about the day-to-day negotiations of slavery, slaves who could use agency not so much for out-right rebellion but to negotiate the terms of their labor and how they interacted with their masters, there are examples of slaves who sabotaged their own body at market to prevent a sale to an undesired master.

My favorite example, though—and it’s a very unique one—of a slave who utilized a masquerade of disability to her advantage was Ellen Craft, who, in 1848, escaped with her husband, William, from Macon, Georgia, to Philadelphia.

ED AYERS: And that’s a long way to escape [laughs] as enslaved people, right?

DEA BOSTER: It is. What’s really remarkable about the Craft story is that they traveled on public transportation the entire way.

ED AYERS: Wow.

DEA BOSTER: Yeah.

ED AYERS: So, I’m guessing disability played a role in this? Can you explain?

DEA BOSTER: Absolutely. So, the Crafts devised a plan where Ellen, who was fairly light-skinned—presumably, she was the daughter of her master, her white master—she disguised herself as a white slave-holding man, and gave herself the persona Mr. Johnson, and her husband, William, who was slightly older than she, disguised himself as Mr. Johnson’s servant.

And the cover story was that they were going to Philadelphia to seek medical treatment and, in order to cover up—

ED AYERS: For Mr. Johnson?

DEA BOSTER: For Mr. Johnson, yes. In order to cover up Ellen’s femininity, her voice, the fact that she could not read or write, because as a slave she had never been trained how to read and write, they utilized a variety of disabling characteristics.

So, they put shaded green glasses over her eyes to feign a problem with her eyesight. They wrapped her head in poultices. When an acquaintance who knew her as a slave tried to strike up a conversation with her, she feigned deafness so that she wouldn’t have to respond. And, most importantly, they bound her right arm in a sling so that she would have an excuse not to register her name for hotels and such along the way because she didn’t know how.

ED AYERS: So, it’s interesting that they used disability to make themselves invisible and, in some ways, in inaudible [laughs] on their escape from the South.

DEA BOSTER: And they could exploit the reactions to disabling injuries, whether it was revulsion, whether it was repression, horror, disgust, pity, sympathy.

ED AYERS: It’s fascinating how enslaved people, such as Virginia or the Crafts, were able to use disability as a way to actually buy a little bit of space in a society that otherwise left them so little.

DEA BOSTER: And, certainly, that tells us an awful lot about expectations of disability and ideas about disability in antebellum society more generally. The more visible or apparent a disability is, the greater the impulse to render that individual invisible. So, I think that actually helps lend complexity to this issue, to understand exactly how disability can work on so many levels in American society and in American history.

[MUSIC]

ED AYERS: Dea Boster is a historian at Columbus State Community College and author of African-American Slavery and Disability: Bodies, Property, and Power in the Antebellum South, 1800 to 1860.

[MUSIC]

BRIAN BALOGH: Earlier in the show, we spoke with actor Mat Fraser. He’s best known for his part in American Horror Story, where he played Paul, the Illustrated Seal Boy. The role was a fitting one; 15 years ago, Fraser constructed an entire act based on a historic sideshow performer named Stanislaus Berent, whose stage name was Sealo the Seal Boy.

We asked Fraser how he started in the profession, and to tell us about its history.

MAT FRASER: It all started when I was an actor, and I went for an audition at The Bill, which is our long-standing police drama. And I had a great audition with the guy, but then I didn’t get the call, and I just knew it was my disability.

And we called them, and they said, “Oh,”—we caught them on the hop—and they were all, “Um, um, um, he needs to drive, so there’s a problem. The character needs to drive,” and I have “full driving license” at the front of my resume, so they just picked the wrong excuse.

And I thought, “OK, I get it. People don’t want me. Right. Where can I go where not only will I be wanted, but no one can take the job from me?” and, at the time, I was interested in looking at freak shows as the cultural heritage of disabled performers today.

[MUSIC]

MAT FRASER: For myself, I come out in usually to some sort of sexy, pretend sexy, music with a jacket with pretend long arms. I then let them drop from the sleeves. Then I throw away the jacket, and I’m like, “Yes, it’s me,” and then I explain my physical condition, this condition called phocomelia, is seal-like limbs.

So, I talk about being the seal boy and being scared when Canadians come to the show because they’re famous for clubbing seals and, you know, real bad-taste humor like that.

I end up by doing my clever rock drumming and, say, do a roll in a paradiddle and do a bit of explanation, and then I get the hell out of dodge.

[MUSIC]

MAT FRASER: When I explain my medical condition in terms of what my bones are like, I can see that the audience are genuinely interested, and do I detect a sort of relief to understand? I think I do. I don’t want to put words into their expressions, but I’m really convinced there’s a sort of appreciation of understanding.

You know, you’re not allowed to ask the disabled person, “So, how are your bones work then? Those funny little arms you’ve got, how do they work?”

It’s the fear of the unknown, I think, that is a lot of difficulty around the language of disability and, of course, political correctness—and, of course, self-respect to disabled people—meant that it’s just not cool to go around going, “So, why can’t you walk?” It’s just not cool to do that, but people still want to know and, in the sideshow, you get to tell them, and they get to find out.

[MUSIC]

MAT FRASER: This is part of America’s entertainment heritage, and so I very much feel that in doing the Sealo the Seal Boy’s act, you get a guilt-free slice of history to see what it was like for a disabled performer.

He was very proud of the fact that throughout his 35-year career, he looked after all five members of his family. He kept them clothed, housed and fed, and it was something that he was tremendously proud of. And back in those days, he wouldn’t have been able to do much, so it was a way of validating him. Because in—not to get too political—but in our capitalist society, you are what you do.

I have to say, I think this is actually a growth movement at the moment, not a subsiding one, which it was when I came into the business about 15 years ago. And I think what’s wonderful is that disability is just considered normal now within it.

It’s simultaneously a normalizing of the congenital difference with a glamorizing and an exoticizing of that difference for performance purposes.

[MUSIC]

BRIAN BALOGH: Phew. Mat Fraser is an actor and performer. We’ll link to videos of his performance at BackStoryRadio.org.

[MUSIC]

ED AYERS: In July of 1990, President George H. W. Bush signed the Americans with Disabilities Act. This landmark law prohibits any employer from discriminating on the basis of disability. At the signing ceremony, President Bush hailed the legislation as an unambiguous civil rights achievement.

GEORGE H.W. BUSH: [applause] Three weeks ago, we celebrated our nation’s independence day, and, today, we’re here to rejoice in and celebrate another independence day, one that is long overdue, and with today’s signing of the landmark…

ED AYERS: Long overdue because the ADA was the result of a decades-long civil rights battle. We’re going to end today with a look back at a key moment in that struggle.

BRIAN BALOGH: In 1973, Congress passed the Rehabilitation Act. It mostly applied to veterans, but it included a clause, Section 504, that prohibited any federally-funded institution from discriminating against anyone based on disability. But there was a hitch. In order for Section 504 to be enforced, regulations had to be drafted, and—

EMILY SMITH-BEITIKS: They needed a signature from the head of Health, Education, and Welfare.

BRIAN BALOGH: This is Emily Smith-Beitiks, associate director of the Paul K. Longmore Institute on Disability. She says President Nixon’s Health, Education and Welfare secretary never signed the 504 regulations. When Jimmy Carter took office, his secretary, a man named Joseph Califano, didn’t sign, either.

Without those regulations, people with disabilities continued to face rampant discrimination and unemployment. By 1977, they weren’t going to take it any longer.

EMILY SMITH-BEITIKS: Protests in 10 cities across the U.S. were helped at Health, Education, and Welfare offices to demand the signing of 504 regulations on April 5, 1977.

BRIAN BALOGH: In San Francisco, disability rights activists occupied a federal building for nearly a month. Although protesters didn’t know it when they showed up in the morning, leaders in the movement planned to stay until they got that signature. Emily Smith-Beitiks collected oral histories from those involved in that protest.

NEWS ANNOUNCER: It all started this morning here at the old federal building on 50 Fulton…

SWAMI SUDDHANANDA: Somebody said to me, “There’s a demonstration at the federal building tomorrow.”

JOE QUINN: “It’s going to be outside from blah to blah time. We’re inviting deaf people to come, so we need an interpreter. Can you interpret?”

[MUSIC]

SWAMI SUDDHANANDA: So, we were just going around in a big circle with signs and chanting different slogans and singing songs, and it was hot, and the third hour into it, I was thinking, “I need to go home,” and that was when the organizers said—

JOE QUINN: [whispers] “Tell the deaf people we’re going inside.”

I was like, “What?”

“We’re going into the building. We’re going to take over the building.”

NEWS ANNOUNCER: [crowd singing in the background] Immediately after their demonstration this morning, the handicapped started invading the building.

JUDY HEUMANN: We were let into the building. Nobody charged into the building unwelcomed, but we just didn’t leave.

DENNIS BILLUPS: I was surrounded by 200 people or more. I had my cane in hand, and I was saying [clapping], “504, 504,” and then it [crowd chanting in the background] started it. “504, 504.”

JOE QUINN: There was a chant, “Sign 504, sign 504, sign 504,” [laughs] and I remember, like, this sea of deaf people signing that.

DENNIS BILLUPS: And then I says, “We won’t move. We won’t move. We won’t move.”

NEWS ANNOUNCER: I’ve just gotten word, too, these people are now locked into the building…

BARRY RYAN: And we stayed that night, and we continued to stay, but we had no idea how long we were going to be there.

SWAMI SUDDHANANDA: And, if we starved in there, that’s what was going to happen. If we got sick in there, we’d get sick in there. Whatever was going to happen, we were just going to be in there until this thing got resolved.

EMILY SMITH-BEITIKS: And the protesters stayed in the building for 26 days.

[MUSIC]

KITTY CONE: I mean, I remember the first night, trying to decide what to do when they came to arrest us, because we were sure that they were going to come to arrest us. And we were surprised that they hadn’t taken us out already.

BARRY RYAN: I don’t think they’d seen so many disabled people acting up, I suppose, is the term. I mean, what could they do? They were afraid if they picked someone up, they might hurt them. They were just completely lost and confused.

BONNIE REGINA: You know, the image of disabled people up until that time had been that we were all little, pathetic children with individual tragedies and, well, none of that was true.

[MUSIC]

BARRY RYAN: We were sleeping wherever there was free space, so we had the large conference room, we had the hallway, and some were around the elevator, and I slept under one of the large desks.

KITTY CONE: I think probably everybody was in pain. A lot of us had physical disabilities, and sleeping on the floor is just… First of all, you’ve got to get down there, and then you’ve got to get up, so a lot of blind people came and helped us get on the floor and get up in the morning.

JOE QUINN: There were certainly [laughs] romances that bloomed in the building, and I actually had created a tent out of a big chenille bedspread that I had, so it was one of the few fairly private spaces, and people would come to me and say, “Um, could I… could I use your tent?” [laughs]

It was like, “Sure, yeah,” just being a friend. Just being a friend.

[MUSIC]

JUDY HEUMANN: It was pretty amazing that we had three meals a day.

BARRY RYAN: They couldn’t stop food coming in. They couldn’t starve ’em. That would look even worse. [laughs]

BONNIE REGINA: The Black Panther party was there every day bringing us really good food.

SWAMI SUDDHANANDA: And the people with the guns at the doors said, “You can’t come in,” and they said, “Either you let us in, or we’re going to come back with our guys, with our guns.” And they let them in.

[MUSIC]

SWAMI SUDDHANANDA: The media was our main weapon.

NEWS ANNOUNCER: The scene at San Francisco’s HEW headquarters now is in its third day, and 125 disabled and…

EMILY SMITH-BEITIKS: At one point, the building, trying to figure out how to get these people out of their [laughs] federal building, said, “Well, let’s turn off the phones. If they can’t reach the press, their power will be weakened.”

SWAMI SUDDHANANDA: There were huge windows in the federal building, and there were people signing the press releases—

KITTY CONE: To people on the outside, and then interpreters would interpret what was being said on each end.

EMILY SMITH-BEITIKS: So much so that, within a day, the building said, “Ugh, give them the phones back. It’s not making a difference anyways.”

NEWS ANNOUNCER: And 125 disabled and handicapped are pledging they’ll continue the sit-in through tomorrow night, if not longer.

NEWS ANNOUNCER: But the problem on this, the fourth day, is still the same as it was on Tuesday: trying to get the attention of Washington.

[MUSIC]

EMILY SMITH-BEITIKS: So, after the protesters had been in the building for a couple weeks, they started to get antsy that Washington, D.C. was not adequately aware of what was happening.

KITTY CONE: We had an election to choose who went to Washington, D.C.

JUDY HEUMANN: We looked at the amount of money we had [laughs] and the kind of support that we would need, so we had personal assistants and sign language interpreters, and we wanted a diversified group of people that was racially diverse, that was disability diverse.

EMILY SMITH-BEITIKS: In D.C., conditions were very similar to what they had been back in San Francisco. They stayed in a church basement. They were, again, sleeping on the floor. But what infuriated the protesters is that Califano, head of Health, Education, and Welfare, and Jimmy Carter, would not meet with them.

KITTY CONE: I think the first night, we went and had a vigil outside of Califano’s house, and he left by the back door, and we went to Carter’s church, and left by the back door. So, this was part of our tactic, was to say, “This is not an open door administration.”

NEWS ANNOUNCER: And, in the meantime, the group of handicapped people are sticking to their guns here in San Francisco. Today starts the third week of their sit-in at the old federal building…

EMILY SMITH-BEITIKS: So, the protests continued in this way with a group in San Francisco still in the federal building, and a group in D.C., and, on the 24th day of the occupation, word reached them that the 504 regulations had finally—finally—been signed.

[MUSIC]

JOE QUINN: And I remember when we heard, there was just this really joyous explosion.

BARRY RYAN: We’d won.

KITTY CONE: We just—I mean, I think the overwhelming feeling that everybody had was just pride.

BONNIE REGINA: Pride, and power.

JOE QUINN: And the whole group starts singing “We Shall Overcome,” and [crowd singing in the background] because there were so many deaf people involved and interpreters there, a lot of people had learned the sign for this particular song, and the whole room was signing, [sings] “We shall overcome,” and it was just this beautiful, beautiful moment.

[MUSIC: “We Shall Overcome”]

PETER ONUF: When Congress passed the Americans with Disabilities Act in 1990, it bore the imprint of the 504 protests. The ADA itself echoed and expanded the 504 regulations, extending the guarantee of civil rights to the private sector.

[MUSIC]

PETER ONUF: But it was the history of civil protest that was most on the display when the first President Bush spoke at the law’s signing ceremony.

PRESIDENT GEORGE H.W. BUSH: It’s been the work of a true coalition of people who have shared both a dream and a passionate determination to make that dream come true.

[MUSIC]

BRIAN BALOGH: Emily Smith-Beitiks is the associate director of the Paul K. Longmore Institute on Disability at San Francisco State University. She collected these oral histories as part of a project celebrating the 25th anniversary of the ADA. It’s called Patient No More: People with Disabilities Securing Civil Rights. You can find a link to the exhibit on our website.

We heard from protesters Kitty Cone, Barry Ryan, Bonnie Regina, Joe Quinn, Judy Heumann, Dennis Billups, and Swami Suddhananda.

We had help from the Disability Rights Education and Defense Fund.

[MUSIC: “Body Language” by the Jackson 5]

PETER ONUF: That’s going to do it for us today, but you can join us online to continue the discussion. Tell us what you think of this week’s show and help shape our upcoming shows, like the history of American-born religions.

You’ll find us a BackStoryRadio.org, or shoot us an email at backstory@virginia.edu. We’re also on Facebook, Tumblr, and Twitter @BackStoryRadio. Whatever you do, don’t be a stranger.

[MUSIC: “Body Language” by the Jackson 5]

ED AYERS: BackStory is produced by Andrew Parsons, Brigid McCarthy, Nina Earnest, Kelly Jones, and Emily Gadek. Jamal Millner is our engineer. Juliana Daugherty is our digital editor, and Melissa Gismondi helps with research.

Special thanks this week to interpreters Adam Bartley and Eileen Schein from the Gallaudet Interpreting Service.

Thanks also to Catherine Kudlick and everyone at the Paul K. Longmore Institute on Disability at San Francisco State University.

Additional thanks to Brenda Brueggemann and Susan Burch.

BRIAN BALOGH: BackStory is produced by the Virginia Foundation for the Humanities. Major support is provided by an anonymous donor, the National Endowment for the Humanities, the Joseph and Robert Cornell Memorial Foundation and the Arthur Vining Davis Foundations.

Additional funding is provided by the Tomato Fund, cultivating fresh ideas in the arts, the humanities and the environment.

And by History Channel: History made every day.

ANNOUNCER: Brian Balogh is professor history at the University of Virginia. Peter Onuf is professor of history emeritus at UVA, and senior research fellow at Monticello. Ed Ayers is professor of the humanities and president emeritus at the University of Richmond.

BackStory was created by Andrew Wyndham for the Virginia Foundation for the Humanities.

[MUSIC: “Body Language” by the Jackson 5]

ANNOUNCER: BackStory is distributed by PRX, the Public Radio Exchange.