Bonus Episode: Interview with Kim Nielsen
A short history of disability in the United States.
July 26, 2020, marked the 30th anniversary of the signing of the Americans with Disabilities Act. But the history of disability in the United States goes back much further. Historian Kim Nielsen tells us that disability has always been part of American life, from precolonial times to today. Our producer Rigoberto Hernandez talked with Nielsen about her book A Disability History of the United States.
Nielsen, Kim. A Disability History of the United States. Boston, Massachusetts: Beacon Press, 2012.
Alexis Pedrick: I'm Alexis Pedrick.
Lisa Berry Drago: And I'm Lisa Berry Drago, and this is Distillations.
Today our producer, Rigoberto Hernandez, talks with Kim Nielsen. She's a professor of disability studies and history at the University of Toledo and the author of A Disability History of the United States.
Alexis Pedrick: This is a selected history of disability, not meant to be comprehensive. It will be chronological from how disability was viewed during colonial times to today, and how COVID-19 is exposing our problematic views on disability.
Rigoberto Hernandez: You say that the history of disability is a history of us. Could you tell us what you mean by that?
Kim Nielsen: I really do believe that disability history is the history of us as a nation and as a individuals because as a concept, the question of who is fit to be a citizen and who's not fit to be a citizen is central to the story of U.S. history. And to me, that's a question about disability and how we understand disability, who's categorized as disabled, you know, so it's there everywhere. But it's also, you know, the experience of all of us that our bodies are changing constantly, our cognitive processes are changing constantly from birth to death. None of us are super fit for our entire lives, whatever fit means, you know, that all of us need help at times. All of us go in and out of the category of disabled throughout our lives, you know, some of us more permanently, others of us not, but, you know, this is the story of what it simply means to be human.
Rigoberto Hernandez: I read your book, A Disability History of the United States, and I love how it's organized. It's very chronological, so I'd like to keep this interview in chronological order. You mentioned that for many Native Americans, the word or concept of disability is non-existent, and I was hoping you can tell us about that and how that changed when Europeans came over.
Kim Nielsen: I think this was a really difficult idea to convey because disability is such a dominant concept in our time and culture in the United States right now, but to say that it didn't exist at an earlier time, it's hard to explain. We almost lack the words to talk about it, but because a variety of indigenous cultures, you know, invariably defined fitness in very different ways than we do today, they did not have the same concepts around disability. Instead, people's worth and values were judged in different ways, and competency, civic, personal, relational fitness was all defined very differently, so this concept we have of disability today just simply didn't exist. My students always struggle with this, and I feel like I struggle with this too because it's so embedded in what we do.
You know, there are thousands and thousands of in, of indigenous tribes in the U.S. prior to European arrival and all of them are different, but the vast majority simply judged a human being's worth differently than Europeans did, and did not base it on the same kinds of bodily and cognitive differences that Europeans did. For example, if, you know, I might be a really marvelous storyteller, and in most European societies, that wasn't worth much monetarily, but in indigenous cultures, at least some of them, that might be valued very highly, and so I might not be able to walk, but if I could tell great stories, I would have worth. I would contribute to the society in that way, and I was valued for those contributions. In most tribal societies, people were judged by what they can contribute, and that was not always defined monetarily.
Rigoberto Hernandez: Many Native Americans communicated with a form of sign language, either with people who were deaf or with other tribes who didn't speak their languages. What does that tell you about their societies?
Kim Nielsen: I just find that so amazing, and, you know, that Plains Indian sign language once encompassed the majority of North America, you know, clearly spreading far beyond what we call the U.S. today, and I think that one illustrates a, a willingness and a desire to communicate in non-oral ways, and to value that. But also that tribes that spoke very different oral languages, you know, wanted to be able to communicate for economic reasons or political reasons or, you know, reasons of flirtation between people, and, you know, they could do so via that, um, signed language. And, you know, that could come in very handy for all those kinds of reasons that I talked about, but it also meant that people with hearing impairments were much more easily integrated into society, and the oral limitations or oral differences didn't matter so much.
Rigoberto Hernandez: And so when Europeans come over, they themselves had not developed a formal sign language as we understand it today. What did they see when they saw Native Americans communicating through sign language?
Kim Nielsen: You know, when Europeans arrived and saw Native Americans communicating via sign language and attempting to communicate with them via sign language, Europeans tended to interpret that as something primitive, animalistic, a sign that, um, indigenous societies who were not very civilized, not very advanced, um, even though indigenous societies had developed the sign language far earlier than Europeans ever did and relied on it extensively. But Europeans tended to interpret that in really negative ways.
Rigoberto Hernandez: When I read it, I thought of it as like, "Well, it's only legitimate when we do it."
Kim Nielsen: Yeah, I think that's true, and, you know, Europeans could not even imagine that the folks that they encountered in North America could be advanced in ways that they were not, and so, you know, that this was an actual language with grammar and vocabulary was beyond their imagination.
Rigoberto Hernandez: And so Europeans not only brought those kind of prejudice, but they also brought disease that wreaked havoc in several ways, and it even caused disabilities. Can you tell us what happens when Europeans arrived to the communities that they were invading or inhabiting?
Kim Nielsen: Yeah, so, you know, when Europeans arrived, you know, in varying stages all across North America, Central America, South America, they brought military damage and harm and decimation, but they also brought diseases with them that had not arrived in North America earlier. And, you know, I think this is a really timely conversation obviously because of COVID-19, and we see the k-, the chaos and devastation that COVID-19 has brought, and I've been thinking about some of the evidence we have in which some native societies where at times had a 20, 30, 40, 50, 60% death rate because of the diseases that Europeans brought with them, and of course, that brought just incredible social devastation and relational devastation and spiritual devastation. As well as for those who survived, it often brought, um, blindness, and for people who, who in essence were elderly or had mobility impairments, couldn't get around, they often were left behind or, you know, had limited access to resources during these epidemics which contributed to the death rates. The diseases that Europeans brought with them just did incredible damage, and I think, you know, the stress that all of us are experiencing right now is just a minor, minor portion of what indigenous tribes experienced when Europeans arrived.
Rigoberto Hernandez: And when Europeans immigrated, and there's like a whole subtext on disability, there was even a question of who can even get on the boat to travel.
Kim Nielsen: Absolutely. You know, for most Europeans who arrived, they were allowed to come over and judged or, you know, purchased tickets based on what was considered their physical ability to work once they arrived in North America, perhaps their physical ability to reproduce once they arrived in North America, but they were very much judged against disability, and disability was a marker that was used to keep some Europeans from traveling to North America because it was assumed they would have nothing to contribute. So those who arrived, sometimes they experienced malaria, which was a new disease to many of them, which was physically disabling or could cause death. They experienced warfare which resulted in disability. So disability was really omnipresent, even though Europeans tried to exclude it from those who arrived in North America.
Rigoberto Hernandez: And so when Europeans arrive and they started settling, they categorized people. They started categorizing people as either idiots or distracted people. An idiot is described as someone wanting of understanding, but unable to provide for themselves. In other words, idiots were born this way and it was permanent. A, a distracted person was someone with a mental disability that usually developed later in life and could be temporary. And I just want to make a note about language. What is the appropriate way for us to use these words? Uh, how should we talk about these things?
Kim Nielsen: Yeah, this is a big dilemma, isn't it, and it's troubling. You know, I chose in the book to use the language that was used at each time period because I think it's important we be honest about that and try and unpack it, and often see how derogatory terms we use today that we don't necessarily see as tied to disability were disability diagnostic terms in prior time periods. You know, I chose very purposefully to use those words, but they are troubling, and I think it's okay to say they're troubling.
Rigoberto Hernandez: When they're categorizing as idiots or distracted people, they're also putting values into those words, like, "You're an idiot and who was born this way and you can't control yourself," or, "You're distracted, and that one's more of your fault." Can you break down what are these value systems that they're putting and what consequences they had?
Kim Nielsen: Many of the disability designations like idiot or distracted meant that people lost their civic rights. So in the case of some European groups, white men who were categorized as idiots would not be able to vote or own property or control the property that they owned, make decisions about it. So these diagnoses not only became socially othering, right, and categorized people as ineligible for participation in society to a full extent, but had real concrete economic and legal consequences.
Rigoberto Hernandez: Why would they need to define who is who? Why was it so important for them?
Kim Nielsen: You know, I think it's for the same reasons that lines were drawn around race, lines were drawn around sex, sexual expression, that this is the creation and maintenance of hierarchy and the creation and maintenance of power divisions, which literally wrote some people out of the power arrangements.
Rigoberto Hernandez: European colonists tend to pay more attention to mental disability as opposed to physical disability. Why is that?
Kim Nielsen: I think the European colonists, particularly those who settled in New England, they came as family units, and so that meant kids, it meant elderly people, but they adjusted work so that everybody, nearly everyone could do physical labor of one kind or another, and they were fairly tolerant, as you said, or embracing or indifferent to physical disabilities and physical differences. But they really questioned whether folks with psych disabilities or cognitive disabilities could contribute, and they tended to not know what to do with those folks, and instead really isolated those folks.
Rigoberto Hernandez: Were they were just more taboo or were they just more difficult to understand?
Kim Nielsen: Yeah. You know, I think it was more taboo. There was a greater likelihood of folks believing that psych or cognitive disabilities were a punishment from God. It is, you know, fascinating to me that that is a group of white men who often were barred from the vote, those with cognitive or psych disabilities, and, you know, that that really shows that in that early period, that was a diagnosis that was considered beyond reach, beyond the pale, beyond being able to contribute to society.
Rigoberto Hernandez: Some of the people who were considered quote, unquote idiots or distracted people, the government did not want to take care of them. Uh, that responsibility went to family members. Why is that?
Kim Nielsen: Yeah, I think has been a, you know, debate forever in what has become the United States of who takes care of people when they need help, and of course, we all need help at different times in our lives, and, you know, for children, it tends to be parents who have the responsibility of taking care of them and providing help. This is a, something we wrestled with and we continue to wrestle with, and we're wrestling with today in society of what kind of help do we provide to people and who is entitled to that help. And in the colonial period and the early national period, it tended to be families who had responsibility for caring for those who needed assistance economically, socially, so, you know, it was given to families, and families could be punished, for example, for not supporting an elderly family member who, um, could not do the labor to support themselves economically. Communities as a whole did not want to take on that labor and that economic expense.
Rigoberto Hernandez: Yeah, I was reading that there were municipalities that were trying to get rid of people who had mental disabilities, and they were dumping them into other municipalities.
Kim Nielsen: Isn't that amazing? You know, I'm, I'm stunned by those stories of city officials, you know, literally sneaking dependent people out of their communities and dumping them in another in the middle of the night so that the first community would not be economically liable for that person.
Rigoberto Hernandez: If you're a family who's taking care of a person with disabilities, oftentimes they would tuck the person away, like hidden in their room, and that has consequences. That actually kind of creates some disability. Can you talk us through what that means?
Kim Nielsen: I think it had contradictory consequences, because for some people with disabilities, that meant they were hidden away and had few relationships and did not participate economically. For others with disabilities, and maybe depending on the kind of disability or depending upon their family dynamics, it meant that they were far more integrated into the family economy or into the family relationships. You know, there's cases of some grandparents, for example, who may have been, you know, had bodies such that they spent a lot of time in bed because of various infirmities, but who did a lot of childcare labor, 'cause that could still happen. But, you know, for some families, it really meant that particularly people with psych disabilities were often kept in really horrible situations. And I think, you know, it also defined disability labor or the labor of caretaking as a non-monetary labor, as women's labor, as a labor that was hidden, and then not valued. You know, we see today how caretakers are, right, one of the poorest paid people in society, and at this point they're who we're all relying on right here, right, for caretaking, but it meant that all that caretaking labor was not valued economically and hidden.
Rigoberto Hernandez: And it's interesting because one of the people that you speak about who was considered quote, unquote disabled, he was still able to participate in society somehow. They were still able to become a teacher somehow?
Kim Nielsen: Yeah. This is such an interesting example to me. When family members could not provide care for people's disabilities, communities would step in, even when they didn't want to, but they then tried to get as much labor as possible out of the person with the disability, and I think you're referring to a case in which a, I think the early national period, a, a young man, he was a Harvard graduate, a preacher, ended up with some significant psych disabilities, but he could read and write, and they actually locked, a community locked him in the schoolhouse so that he would be the community teacher. And they did not want him to leave, but, you know, they wanted labor out of him, and so he was locked in the school and made to be the community teacher. You know, I have no idea about what kind of quality education he provided or not, but it was an effort to get labor out of him.
Rigoberto Hernandez: One thing that was an undercurrent throughout the book was capitalism. Can you walk us through why capitalism is so ingrained into the history of disability?
Kim Nielsen: Yeah. I think it is, and I think this early period in the U.S. of capital development and industrial development are really core to understanding how disability has been understood in the U.S. conceptually. You know, I think at the core of capitalism is the valuing of some kinds of labor more than others. That's simply at the core, and then taking that further of some bodies who do certain kinds of labor more than others, and as industrialization and standardization happened, employers began looking more and more for similar, the same kinds of body, the same time, kinds of cognitive means of doing work amongst their employees.
You know, for example, the early shoemaking industry was in homes, and entire families would be involved in the shoemaking industry, and we have a lot of historical evidence that, for example, people with mobility disabilities did a lot of work in the shoemaking industry. You know, they might be at home, they may not be able to travel much or move far from their homes, but they were very important to the shoemaking industry. But once the shoemaking industry moved into factories and a certain kind of body was expected, and all of those laborers were expected to be able to walk from a boarding house and maybe a boarding house with stairs to three or four levels, and to the factory to do that labor, we know that lots of, in this case, women who did shoemaking labor and were very skilled laborers, were unable to participate and lost their value as economic producers, and thus had less strength even in their own families. Um, so as capitalism developed, it was increasingly looking for a very specific kind of body, a specific kind of cognitive expression, and others were left behind.
You know, I think the big irony is that industrial labor was really disabling, whether that was coal mines or shoemaking or farm work, industrial farm work. You know, those are really hard on bodies and often on minds, and it was very disabling. So even while it excluded disability at the beginning, it created a lot of disability.
Rigoberto Hernandez: We just did an episode about so-called monstrous births, and you tell a story in your book that connects to that. Could you tell me about Mary Dyer and Anne Hutchinson? Who were they and what happened to them?
Kim Nielsen: I think that story of Anne Hutchinson and Mary Dwyer are so, it's so interesting for so many reasons. You know, these were two women who challenged the patriarchal religious leadership in their communities and claimed the authority to preach and to consider religious matters, um, and were exiled from their communities because of that and took some religious followers with them. And both women we know had stillbirths or children who died, um, very early after birth, which is incredibly common both today, and are premature births both today and in the past. You know, we don't know, were these early miscarriages? We don't know, but both women were accused then of having monstrous births, of giving birth to monsters, and they're described by the religious leaders in very devilish and disabled terms that such in essence perverted women produced perverted children, and in both theological and disability terms. Disability was used here as a sign of religious perversity.
Rigoberto Hernandez: I mean, that has consequences, right? It puts disability immediately as a negative.
Kim Nielsen: It does, yeah, absolutely, and a negative and something aligned with evil or symbolic of evil. I always think of Cotton Mather, the famous preacher, who apparently stuttered, and blamed that stuttering as his theological weakness, that he wasn't strong enough in his faith in God, and thus it manifested itself in terms of disability, um, and I think that's what was happening with Anne Hutchinson and Mary Dwyer is that their suh- supposed monstrous births were a sign of, uh, a physical manifestation of their religious deviation and deviation from patriarchy.
Rigoberto Hernandez: We talked about how disability was factored into which Europeans were allowed to immigrate into North America, but how did disability factor into the practice of slavery? Could you tell us about the slave ship called Le Rodeur?
Kim Nielsen: So such a sad story. It's one that really stayed with me for a long time and I think maybe should stay with all of us, but of enslaved, you know, Africans who on the trip from Africa to North America became blind. A disease went across the whole ship, you know, epi-, an epidemic. It hit the ship, and many people were hit by this, including many of the sailors, the captain. Some became blind temporarily, some became blind permanently or had impaired vision.
But because those enslaved individuals would then bring less money, what we look back at as a horrible economic decision, and this was human cargo and people were considered property and people were considered product, and they were quite literally insured, and he would do better economically if he simply threw those folks overboard as damaged cargo and collect an insurance on them once they arrived at their destination and rather than selling them at a reduced rate, devalued because of their disability. And you know, the story got out, and, you know, we still know about it today because of that, but it, it's such a, a, a horrific story that is likely to have happened more than what we know about, and I think, you know, really shows the devaluing in this case that happened with both racism and ableism, you know, to literally result in folks being thrown overboard.
Rigoberto Hernandez: So slaveholder colonialists, they used disability as a way to justify their slaveholding, right?
Kim Nielsen: It is, and I think this is one way in which we see disability operating as a concept really forcefully in U.S. history where slave owners and those embracing racism could categorize an entire group of people as disabled inherently in body and mind, which they did regarding Africans and African Americans, and thus justify slavery. You know, they, they combined ableism and racism to do that really inseparably, and said, you know, these human beings are inferior, they're, they're inherently deficient, inherently disabled, um, of body and mind, and thus need slavery. Proponents of slavery, you know, used that to, like I said, to justify slavery, and to argue that slavery really benefited Africans and African Americans.
Rigoberto Hernandez: And it's interesting because when slavers when to Africa, they purposely had someone in mind who was not quote, unquote disable.
Kim Nielsen: Yeah, and I think that's one of the real ironies here, right, is that slave owners and slave traders valued very highly the physical abilities and reproductive abilities of enslaved peoples, and obviously enslaved peoples produced economically and were, and they were forced to produce economically, and their labor was valued, and yet they were defined in racist and ablest terms as, you know, unable to contribute and needing slavery.
Rigoberto Hernandez: And on the other side of that, abolitionists also used disability as a way to frame their anti-slavery arguments.
Kim Nielsen: They did, and again, this is, right, where disability is everywhere and abolitionists often talked about the way that slavery was disabling both of body and mind, and thus used that argument to argue against slavery, and saying that African Americans needed to be rescued from slavery. So, you know, both the pros and cons of slavery are the people who were argued against and the people who argued for it used disability to talk about slavery.
Rigoberto Hernandez: In your book, you talk about the 1830 census and how that was the first time that deaf, blind or dumb residents were recorded, and then in 1840 was the first time that there's a question about insane or idiot residents, and freed slaves had a high rate of insanity. Why was the census used to categorize people this way and what does it say about how disability was viewed or used?
Kim Nielsen: I think that really shows our desire to categorize people, and if we can simply categorize them as deaf, blind or dumb in the 1830 census, we'll know what to do with them. I understand the desire to have knowledge, right, but, um, it really meant the creation of categories for people and categories which was often hard to get out of. The 1840 census is really fascinating because it was used in such racist, ablest ways to try and justify slavery.
We know that the numbers are wrong in many extents. You know, for example, there's, there were some towns in the north or counties in the north where the, per the census, the number of insane free African Americans was actually larger than the number of African Americans that was there, but these statistics were used to try and prove that freedom would cause insanity amongst African Americans, and so pro-slavery folks said that we needed slavery once again. The census became a weapon, and it was very politicized in terms of who was counted and how they were categorized.
Rigoberto Hernandez: This is so interesting to me is the fact that during the post-Revolutionary period, there was a need for order, a need to create institutions. What did that mean for people with disabilities?
Kim Nielsen: Yeah. I think it, it meant contradictory things, and I think this is such an important period in U.S. history that, you know, in that new nation and as urban areas became more... You know, there were simply more people, and larger urban areas and educational institutions sprung up, and more, there were more and more debates about who would be a citizen and who could vote, and what that would mean. It's at that point where institutions for people with disabilities began to be created, and whether that was a, a village poorhouse where people of all kinds of categories were put or an insane asylum or a school for deaf people or a school for blind people, these institutions sprung up all over the United States and just continually expanded westward and southward from New England.
And I think for many folks with disabilities, those had really awful consequences, because institutions very quickly became underfunded, overcrowded very, very quickly, and then, and so it simply had really negative [laughs] consequences on people's health, on pandemics, on... Many people with disabilities were forced to do labor against their will and at no compensation. You know, there were real negative consequences, restrictions of freedom, abuse. You know, there's other cases, however, in which some folks with disabilities, particularly, you know, in the deaf and blind communities, used the creation of community as a means to organize, to create community, to do activism, to create advocacy organizations, even when some of the experiences of institutionalization were difficult.
Rigoberto Hernandez: So post Revolution, half of the veterans of the Revolutionary War were disabled, and as you point out, statistics are hard to come by, but we do know that up to 50% of them were disabled, and yet they were able to carry normal lives. They remained married and raised children, which you say is unremarkable, but that in itself is remarkable. Can you tell us about that?
Kim Nielsen: Yeah. You know, what historians have been able to figure out about disabled Revolutionary War soldiers is that they married at the same rates as non-disabled vets. They lived at the same economic standards as non-disabled vets. You know, they had children at the same rates, and yeah, so in some ways, it's, you know, it's, it's almost like an invisibility of data, but that shows that they were very much integrated into their communities and created labor that they could do, and their communities supported them in that, presumably their families did as well, that they were simply part of the community and integrated in in the same way as non-disabled vets. And, you know, for example, we don't see that today amongst veterans. The rates of marriage, relationship, children, employment, economic standards amongst disabled vets and non-disabled vets is very different today. But I think that shows how integrated into the, the community many disabled vets were after the Revolutionary War.
Rigoberto Hernandez: It's crazy that we had it figured out better then than we do now.
Kim Nielsen: It is.
Rigoberto Hernandez: So it was after the revolution that doctors became the arbiters of disability. Can you tell us how that gave birth to what we now understand as a medical model, and if you can kind of tell us what the medical model of disability is?
Kim Nielsen: You know, prior to the Revolutionary War, roughly saying, or early industrialization, when communities would assess whether a person was disabled or not, medical people tended not to be involved. Instead, we might ask your family members or your neighbors or your religious leader or the person to hol- whom you sold eggs, you know, we would ask those folks. But as the medical profession began to create itself and medical associations became professionalized in the early 1800s, medical people began to be involved in the legal categorization of folks as disabled or not, and began to be involved in conversations about whether or not people needed economic support, community support, veteran support. So disability came to be understood in a medical framework and something which medical professionals decided on in ways that it had never been in the past.
Rigoberto Hernandez: Could you tell us what are some of the consequences of that, 'cause when you hear it, it sounds like it's good that doctors are making these decisions.
Kim Nielsen: I think the difficulty that has come with that is that today we understand disability as almost exclusively a medical situation, and thus stress cure, and when cure doesn't happen, folks are considered failures, and folks with disabilities tend to be only understood in this very medical framework, and that, you know, the reality that folks with disabilities have lives far outside of, you know, their medical diagnoses is often ignored. The medical diagnoses are often considered to be permanent, and that diagnosis has come to have great power, particularly with stigmatized diagnoses, of devaluing people economically, socially, and people have become simply less integr- have become simply less integrated into the communities after diagnosis.
Rigoberto Hernandez: It's so ingrained that we take it as normal.
Kim Nielsen: It is, and it, you know, it simply means... I think under the medical model, there's nothing to be learned or gained from disability, and I would argue instead that human variability is really quite immense and can be a great blessing, and it's something we rely on as a society, but when we categorize people with disabilities, you know, as inherently deficient and in need of cure, always in need of change and never good enough, that really does folks a disservice and it damages all of us.
Rigoberto Hernandez: When it comes to immigration, immigration law and disability, at this time immigration laws were being enacted, and one of them was this idea of people who were likely to become a public charge.
Kim Nielsen: Yes. It's so potent and we're still debating it today. Yeah, you know, really early in U.S. immigration laws, and then really as it became even stronger throughout the 1800s and early 1900s, and now continues, is that the U.S. wanted to control who came to the U.S. and who was not allowed into the U.S. as immigrants, and folks who were categorized as likely to become a public charge were not allowed in. And that meant that immigration officials considered them to be likely to become recipients of social welfare. So, of course, that ties back to capitalism, right, and the ability to work and ability to work in a wage framework, you know, but it also means that people's labor was understood in very ablest ways.
You know, for example, you know, I'm always struck by... I use in the book the example of a guy who was deaf and a skilled blacksmith, and who came to the U.S. with at least one job offer, I think it was two job offers in his pocket, and the immigration officials looked at him and said, "Oh, no. You'll never be able to work because you're deaf." And he said, "But I have a job offer," and they said, "No, you're deaf. You'll never get a job offer," and their ableism about his deafness overrode the very job offers he had in hand, and he was refused entry to the United States. And so, you know, even this assumption that people with disabilities would never be able to labor meant that immigration officials could keep them out of the country and deny them entrance, and argue that all folks with disabilities were likely to become a public charge and be unable to work.
And, of course, you know, that's a really elastic category because the ability to labor is so variable, and there are folks with mobility disabilities, for example, who might not be able to be a roofer, but could be a schoolteacher, uh, you know, things like this. What bodies and what brains are required for work is highly variable, yeah, so that category was really elastic and could be used to deny entrance to a whole variety of folks. And of course, lots of folks, particularly white women of upper middle class, were not expected to labor economically, at least for wages, you know, but this category was never applied to them because it was assumed that they would have male economic protection.
Rigoberto Hernandez: Going into the Civil War, it pretty much was a time that created a lot of disability. I mean, a lot of wars time and time again created disability, but the Civil War stands out among the rest for some reason, uh, perhaps because of the images that we see, the literal images.
Kim Nielsen: Yes. Yeah, we have pictures from the Civil War, whereas we don't from the Revolutionary War.
Rigoberto Hernandez: Could you tell us where the Civil War stands in the history of disability?
Kim Nielsen: Yeah. The Civil War was really important in the history of disability in that it expanded pensions dramatically. Certainly they existed for Revolutionary War vets, but they expanded exponentially after the Civil War for Union soldiers. Civil War vets who were Confederate soldiers could not get federal pensions. They could only get state pensions. But the pension systems expanded exponentially. Um, medical professionals were very much involved with them. It became part of the U.S. bureaucracy to provide pensions, but also, you know, simply the number of disabled vets after the Civil War was so huge. And, you know, this was also a war that was fought in many people's back yards and front yards and houses, so disabled civilians, um, both men and women, children, were very numerous after the Civil War. It was just a very deadly war as well.
It's a game changer in the ways that pensions were created and expanded for veterans, and they created a wide variety of categories and percentages for dis- whether one was disabled or not and what all that meant. It was also a time in which prosthetics began to be professionalized, and so the prosthetic industry was involved in the, uh, entire Civil War veterans program in ways that had never happened before, in U.S. history at least, and because vets, disabled vets after the Civil War were simply very visible and everywhere in society.
Rigoberto Hernandez: One of my favorite stories of that chapter was the Invalid Corps. Could you tell us who they were?
Kim Nielsen: So the, the Union army at, at, you know, some point through the war was running out of people. They needed bodies. They needed people to work, and lots of veterans had been, you know, dismissed from the service because of disability acquired during the war. And the military had this idea to create the Invalid Corps and they did, and disabled soldiers could come back and serve in this corps, and the plan was that they would do labor far away from military battles, protecting various places or, but whatever they could do far away from military dangers, and so they served. But they became instead, you know, very involved actually in military warfare service, and, you know, there's actually, uh, several battles in which they won in which you had an entire troop of men disabled from prior service who beat troops of non-disabled soldiers.
And yet they were made fun of a lot, in that the Invalid Corps, IC initials, were the same as, um, inspected condemned, which was stamped on food and other products that were spoiled. They were just made fun of a lot and ridiculed, and it was assumed that they would not have any value, and, you know, instead they became very important during the war.
Rigoberto Hernandez: And one of my favorite quotes is from a general who ask, "Will your Invalids stand?"
Kim Nielsen: [laughs] Yeah, I love that too, um, you know, where the leader was asked, you know, if his Invalids would stand, meaning would they run away and surrender to the, um, Confederate forces, and, you know, their leader made a big joke, saying, "No, 'cause my men can't run," [laughs] which, yeah, clearly, you know, the man had a sense of humor. It's a great line, right?
Rigoberto Hernandez: I want to move on to the next time period in the Progressive Era, the Buck versus Bell Supreme Court decision. Could you tell us about that and the famous quote by the Supreme Court judge that some people might have heard of?
Kim Nielsen: Well, I love being a historian. I think it's so much fun, but it's such a battle of contradictions, and the Progressive period is one in which there are marvelous things that happened about worker safety and wage laws and maximum hour laws and things like this. But the Progressive period also was this rise of eugenics and, you know, literally the attempts to eliminate people with disabilities, and Buck v. Bell was a Supreme Court decision which said that people with disabilities and people deemed undesirable could be forcibly sterilized for the good the nation, and that it was up to local officials to determine who needed to be sterilized for the good of the nation, and, you know, that had real disastrous consequences for a whole variety of people.
The eugenic movement was something that went across the globe and ha- had horrendous impact, not only regarding compulsory sterilization, but eugenic containment of individuals, to remove them from society, to remove them from reproducing. And who was included in this was a real, again a really elastic term that included folks with physical disabilities, folks with cognitive, psych disabilities, folks who were considered immoral, folks whose sexual behaviors were not considered appropriate, you know, folks who were simply poor and had nowhere else to go.
You know, Carrie Buck was a woman who was very poor, and who had been raped and became pregnant as a young teenager and not married. She was in foster care, and the state attempted to forcibly sterilize her, and, you know, this case ended up going up to the Supreme Court. At this point, many states had compulsory sterilization laws, and the Supreme Court ruled in 1924 that compulsory sterilization was again fine for the good of the community.
Rigoberto Hernandez: And what was the decision and what did the judge say?
Kim Nielsen: The decision was yeah, that this is okay to force people to sterilize when it was for the good of the nation, you know, and the, the famous saying from the judge is, "Three generations of imbeciles is enough." That, you know, it was argued that Carrie Buck's mother was an imbecile, Carrie Buck herself was an imbecile per the court, and that Carrie Buck's daughter was an imbecile, and that this needed to be stopped per the Supreme Court. But this gave states blanket permission to pass compulsory sterilization laws. You know, it's really disturbing, and, you know, we see that who was sterilized really varied from state to state. In California, for example, it tended to be women, but certainly men were, uh, sterilized as well, and it tended to be women with Hispanic surnames, at least, you know, interpreted as such. This is something that is very much embedded in local politics as well as in federal politics.
Rigoberto Hernandez: Right, like Indiana was one of the pioneers of these laws.
Kim Nielsen: Absolutely, you know, and there, those targeted tended to be poor whites, you know, so it really varies. It, it's a really disturbing part of U.S. history, and I think, you know, it goes back to that question of who do we want as quite literally the bodies of the United States? Who do we want as citizens? You know, it was determined that some people should not be reproducing, and could be made to be sterilized.
Rigoberto Hernandez: I want to jump to the polio epidemics of 1916, and one of the most famous people afflicted by it is Franklin Roosevelt, and he created the Roosevelt Warm Springs Institute for Rehabilitation, which later became the March of Dimes. Could you tell us about his disability, what he was like when he was at Warm Springs, and who was allowed to be in Warm Springs anyway?
Kim Nielsen: Yeah. Roosevelt had polio as an adult, and the dominant story was that he recuperated fully from polio, but of course, he did not. He generally used a wheelchair. He could not walk on his own, but this was something that was a very well hidden secret amongst most people, you know, but it was also in some ways very much out in the public, but his disability was not talked about in the public spaces. But he was part of a group of folks who created a rehabilitation center in Warm Springs, and he frequently went down there himself. He considered it a space of great freedom where he could be seen not using his wheelchair. He did not hide the fact that he was disabled while he was there. He appreciated the warm springs themselves very much and the rehabilitation activities that happened there were very important to him, and Warm Springs became recognized as a national leader in the rehabilitation of folks with polio.
And the community there was a relatively close-knit one. It was also a very racially segregated community. It was only whites who were allowed to be patients at Warm Springs. Many of the folks who worked there in low wage positions, the caring positions, were African Americans. But for this group of whites, it was a very accepting space, a space that was very accepting of their disability. That was a place and a community that Roosevelt loved.
Rigoberto Hernandez: He mentioned the fact that some people believed that African Americans couldn't be susceptible to polio.
Kim Nielsen: Yeah. You know, there were portions of the U.S. and the medical community who believed that African Americans could not get polio, which is completely wrong. It's just completely wrong, but it was an excuse to not provide medical care or rehabilitative care to African Americans who experienced polio, and particularly in southern parts of the country, racially segregated parts of the country, African Americans we know generally received inferior health care and inferior polio care.
Rigoberto Hernandez: So that kind of ties directly back to slavery. They need to be slave because they can work longer hours, they need less sleep, they need to work more.
Kim Nielsen: Yeah, it's what inherent to racism in the U.S. is both a devaluing of African Americans and a, an assumption that they could do physical labor, which is again contradictory, right, um, but, but it was there, and certainly for other racial groups as well sometimes.
Rigoberto Hernandez: What happens after World War II in terms of people with disabilities, in that they raise these questions about what does it mean to be disabled and what does employment mean?
Kim Nielsen: Yeah. You know, after... There's a few things, ways in which World War II was really transformative. Again, a huge number of veterans who came home disabled and wanted to be included in families and in the workforce, and, you know, simply wanted to labor, and federal government rehabilitation programs expanded immensely. There was certainly limitations of them and often they were applied in very racist terms. The rehabilitation programs expanded, and people wanted to work. Also was the fact that during World War II, just as women of all races were invited into the factories even though they'd been told for generations prior that they couldn't do factory labor 'cause they were physically unable to do so, right, they were invited into the factories, and they did labor during World War II.
It was also the case that many people with disabilities participated in factory labor during World War II. Lots of deaf individuals, lots of folks with mobility impairments participated in factory labor during World War II, so they'd been told for decades that this was impossible for them to do that kind of labor, but they did it. And then World War II ended, and you've got these two communities of people who wanted to participate in public and economic life at the same time that rehabilitation and employment programs expanded for veterans, but it did not expand for civilians. But that was a point, of course, of activism, and many folks who had disabilities really, really pushed to be included in the rehabilitation programs that were only available to veterans at that point in time. So slowly, slowly, slowly, slowly, it's... Everything is slow. Greater economic opportunities did come for some folks with disabilities, greater employment options did come for some folks with disabilities, but it was a really slow gradual push.
Rigoberto Hernandez: One of the most interesting disability communities are people who are deaf, and I was reading about the oralist movement and this idea that you can live in society by just reading the lips of people, and therefore you're not quote, unquote disabled. This was surprising to read because I think of disability communities as united, like we're all in this together mentality, but that might have not been the case early on.
Kim Nielsen: Yeah, so deaf folks in the U.S. developed a sign language relatively early on in the 19th century, and it sort of slowly became standardized, very unevenly standardized, but, you know, as schools for deaf folks expanded, employment opportunities expanded, nearly all relied on sign language. Alexander Graham Bell came along and argued that sign language was a primitive means of communication, it was animalistic, that signing was actually a declining in intelligence, and that the only way and the best way to communicate was orally for people who were deaf, and deaf schools began to embrace oralism. This was the, the teaching style of only relying on oral speech and teaching all deaf kids to participate orally, not via sign language, and the results of that were that it just doesn't work. We know that now. It just doesn't work, and literacy rates, employment rates for people who were deaf plummeted dramatically, even though oralism was dominant for almost a century.
Another consequence of World War II is that the various individual disability organizations begin to form coalitions for the first time. Prior to World War II, disability organizations existed and disability advocacy organizations existed, but it was never disability. It was all diagnostically specific, so blind people, deaf people, wheelchair users, disabled veterans, it was very diagnostically specific. After World War II, they began to form coalitions. You know, it was uneven. Sometimes they were racially segregated coalitions, but different groups of people with different disabilities began to say, you know, "We don't have the same disability experience perhaps, but we have the same experience of employment discrimination, education discrimination, housing, transportation discrimination, that we can work together on and try and advance civil rights."
Rigoberto Hernandez: The United Mine Workers of America, for example.
Kim Nielsen: Yeah. You know, labor unions, and the United Mine Workers specifically, are really important I think in the disability rights story because they simply argued that disabled workers, and we know that mine working was very disabling, had rights, and should be able to work and should be able to participate economically even though many of them had been banned from labor, but, you know, their union was really important in pushing this, just like some of the other unions were. And post World War II was when unions began to work with disability rights organizations to advance labor protections, as well as working options for disabled peoples.
Rigoberto Hernandez: Edward Roberts is from UC Berkeley, and he sued the university actually for not being accessible. I think the movement is well documented, but I'm wondering if you can tell us a little bit about it.
Kim Nielsen: Yeah. You know, at different universities across the U.S., but particularly at Berkeley and at Champagne-Urbana in Illinois, the first individual students with disabilities arrived on campus, uh, after long activism and universities often trying to deny them, but, you know, more and more students with disabilities, sometime veterans, began to show up on campuses and demand entrance and demand accessibility and demand that, you know, changes to the physical characteristics of the campus happen to allow folks in wheelchairs, to allow folks who were deaf to attend college and, you know, advance professionally. But, you know, these folks discovered a lot of... They encountered a lot of resistance, you know.
Um, the story of Ed Roberts is sort of infamous for when he applied to Berkeley, you know, they told him that they had had a chu- student in a wheelchair once several years ago and it just didn't work, so they weren't going to let him attend. But at different universities across the U.S., a wide variety of disabled folks began to really push for admittance and for the access and accessibility that they were going to require.
Rigoberto Hernandez: I'm hoping you can tell us a little bit about your own personal experience. You write in the introduction of your book that you have experience with disability. Could you tell us about it if you're comfortable with it?
Kim Nielsen: Yeah. I did not grow up or even start as a historian intending to be a scholar and historian of disability. It's something I came to by accident, and once I sort of stumbled into it, perhaps quite literally, I fell in love with it. It's, uh, interesting and exciting, but it's also an amazing analytical tool. To me, it's the best way to bring together questions about race, class, gender, sexuality, all together into, into the same conversation.
You know, so I was at that point and identifying myself as a historian of disability, part of this time I would have said I had no experience of disability in my life, but then, of course, the minute I began to really think about it, I knew that it was everywhere in my life, in my family, in my parents' professional experiences. But also, you know, I started this book, I signed the contract, I had ambitions, and my then-teenage daughter became disabled almost overnight very unexpectedly with a rare neurological condition. You know, amongst other things, it meant the book took about two years longer, but, you know, that lived experience was, I think it changed my perspective in the book in a whole variety of ways, um, and I feel contradictory about it in that, you know, I think that as a historian, I try and understand the experiences that I will never live. That is, I don't know what it's like to live in the 19th century, but I read about the 19th century all the time-
Rigoberto Hernandez: Mm-hmm [affirmative].
Kim Nielsen: ... and, you know, so I don't want to say that only people who have such-and-such an experience can write about something. I'm not ready to go there, but I do think that having a very profound deep experience of living with disability has changed how I think about the book.
Rigoberto Hernandez: And in fact, you point out that being able to see U.S. history through the lens of disabilities, it really touches on race and class and all these things, and that was actually something that activists realize as well.
Kim Nielsen: Yeah, absolutely, and, you know, I, I never want to present the disability rights movement as a movement that was free of racism or sexism or homophobia, or even ageism or ableism. The movement has really struggled, but I think like all social change, groups and waves discovered that all of this stuff is highly intersectional [laughs], and the more people we can include and the more broadly we can make these analysis of power, the more effective we can be.
Rigoberto Hernandez: How does COVID-19 intersect with disability?
Kim Nielsen: Yeah. I think COVID-19 intersects with disability so incredibly much in ways that we're still figuring out. The crisis is really showing the intersectional nature of diagnoses because it is impacting in the ways that different communities have different levels of assistance and help. I mean, 'cause certainly the impact on this on poor communities, on communities of color is significant, but also in that ways that we are seeing that people with disabilities, whether that's disabilities due to age or any reason are, it's questioned whether or not they should get medical care, and that's a stark, really, really stark expression of ableism and the question of who should be here and who should be part of society. You know, it can't be starker than that, of who we should keep alive.
I think this also shows that people with disabilities have not been brought into, for example, hospital ethics committees. I've been trying to do some research, and, you know, at least in my area from what I can tell, disability groups have never been brought into hospital ethics committees. I think it also intersects in that personal aide workers and personal care workers, whether that's for folks in nursing homes, whether it's for folks in psych centers, right, group homes for people with cognitive disabilities, developmental disabilities, in hospitals and homes, these are people who earn really low wages. They're currently not being provided with PPE. They don't have access to good medical care, right? They're experiencing COVID-19 at really high rates, and they're not getting good wages, and, you know, it also shows how the caring for people with disabilities is really devalued, you know, and then we've got the situation where those care workers are disproportionately female and they're disproportionately women of color, and they're really at risk, and that means that both people with disabilities and the people who care for them when that's needed are all at risk, and often are considered expendable.
Rigoberto Hernandez: And that's the shocking part, right?
Kim Nielsen: You know, I heard this from students early on that well, you know, they'd be okay because it's only old people and disabled people who are going to die from this thing, and I do, I don't even know where to go with that because that presumes that all of those communities are expendable.
Rigoberto Hernandez: It will be interesting to see what happens after this.
Kim Nielsen: Yeah, it will.
Lisa Berry Drag.o: As always, you can find all of our episodes plus transcripts and show notes at distillations.org, and you can find tons of educational resources on our website at sciencehistory.org/learn. The Science History Institute remains committed to revealing the role of science in our world. Please support our efforts at sciencehistory.org/give.
For Distillations, I'm Lisa Berry Drago.