University Place

The History and Science of Children with Disabilities

Welcome, everyone, to Wednesday Nite @ the Lab. I’m Tom Zinnen, I work here at the UW-Madison Biotechnology Center. I also work for UW-Extension Cooperative Extension, and on behalf of those folks and our other co-organizers, Wisconsin Public Television, the Wisconsin Alumni Association, and the UW-Madison Science Alliance, thanks again for coming to Wednesday Nite @ the Lab. We do this every Wednesday night, 50 times a year. Tonight it’s my great pleasure to introduce to you Walt Schalick. He was born in Pittsfield, Massachusetts, as was my mother-in-law. [laughter] He went to Roger Ludlowe High School in Fairfield, Connecticut, and then did his undergraduate work at Washington University in St. Louis, where he majored in English and physics, which a lot of people do because English and physics. [laughter] Then he went to Johns Hopkins in Baltimore and got both a medical degree and a PhD. His PhD was in the history of medieval medicine. And then he did several fellowships in pediatrics and rehab. He came to UW-Madison 10 years ago in 2007.

Tonight he’s going to talk about a topic that’s near and dear to my heart because I grew up in Dickson, Illinois, and Dickson, Illinois, was the Dickson State School, as we called it when I was a kid, and how you looked at, oh, how we’ve changed in how we look at people with disabilities is a big deal to me because that’s the water that I swam in. His topic tonight is “Childing the Cripple and Crippling the Child: “Children with Disabilities in “American Science and Policy; 1912 to 1960.” Please join me in welcoming Walt Schalick to Wednesday Nite @ the Lab. [applause]

– Thank you, everybody. And I want to have a great shout out to the team here at Wednesday Nite @ the Lab and to Tom. My family and I have been avid followers, both online and in person, at Wednesday Nite @ the Lab, and I have to indicate that it feels to me rather like a Thanksgiving dinner every time we participate in one of these, in part because you have interesting people sitting around the proverbial table, but also because it’s kind of like having crazy Uncle Tom with his marvelous sense of humor and his great status as a raconteur bringing you all kinds of tales that you never thought about. So I’m really grateful for that. And I asked Tom before we started whether or not he’d ever thought of publishing the vignettes that he does in the intros for the email, and I think he desperately needs to do that. So we should all encourage him to do so. [applause] And when it’s a runaway best-seller, the money can partially come back to Wednesday Nite @ the Lab, I’m sure. So, that being said, I trained as a medievalist in part, and when Tom and I had first met and talked about things, we had posited me talking about some of my medieval work, which I’m happy to do, but of the many talks I offered to him, he chose this one.

So first and foremost, I have to indicate that I have no financial disclosures, and this talk should be free of bias, I hope. That being said, since I come by this slide honestly, as Tom noted, one of my first passions was physics, and I’m working on a project of the history of quantum mechanics, but we’re going to be very much like this slide tonight, and I apologize ahead of time. I’m going to try to follow this running of the tongue. So after a brief intro, we’ll talk a little bit about the contemporary science of traumatic brain injuries. Tom had suggested that maybe I should include some modern scientific work, and since some of my network-based research is on that subject, it seemed reasonable. But then we’ll slide into the history of kids with disabilities over the 20th century, and then come to a couple of conclusions, if we’re lucky. I wasn’t going to say this, but I decided it’s better to disclaim now. The organizers have said that I’ve got time on my hands, and you do not want to tell that to a professor because they just keep going and going. I will desperately try and keep this shorter than it could be otherwise.

I’d like to start with a story, and this is a story of an inquisitive simian. I thought his name was Jorge, but it turns out it was George. One day George came across a puzzle box, and he opened it up. And, being inquisitive, he saw these many colored shapes, and the thought maybe they’re candy. And he tried one of them. Unfortunately, they weren’t candy. And very soon he didn’t feel well. Now, he had to eventually go to the hospital, and his companion, the man with the yellow hat, took him to the hospital. We will return to this hospital a little later. And he was waiting in the emergency room, and he met two children before he was eventually seen by a nurse and doctor. And we will come back to those children in a moment. He eventually got an X-ray and eventually had a small surgical procedure. He needed to recover because at that point his HMO was very generous in the amount of time it would give him, and it was not an outpatient procedure. He made friends in the hospital, including a boy in a go-kart, which, if anybody remembers it, you can ask me about the go-kart in the question and answer. Now, being inquisitive, George also got into trouble with the go-kart, but things ended well. Now, I told you that story to tell you this story. The two children he was sitting next to were Jill and Jack. Now, it turns out that Jill and Jack lived in a rural area of town.

They didn’t have running water. One of their chores was every morning to wake up and carry a pail up this winding path to get water and bring it back to their parents. That day that George was in the hospital, they both tumbled down the hill. Now, Jill was fine. She had some minor contusions and bumps, but she was fine. Jack, on the other hand, bumped his head. And he sustained a traumatic brain injury. Traumatic brain injuries are not good. My wife actually used to play hockey, field hockey. She sustained a number of them, and we are both worried about that as she gets more mature. [laughter] Nevertheless, traumatic brain injuries are much in the news for a variety of reasons, not the least for veterans and those in harm’s way. But certainly also for those in harm’s way playing professional football. I chose this image very carefully. Traumatic brain injuries, or TBIs as we call them, are bad for a variety of reasons. You do not need to read the contents of this slide, just take away they’re bad. For kids, TBIs are also bad. They’re bad in part because they cause nearly 7500 deaths. They generate 60,000 admissions to the hospital and 600,000 ER visits a year in the US.

They are one of the main causes of death and disability. So, in fact, if you combine those two, they are the main cause of death and disability in the US for children. They are the fastest growing group of disabilities in the US because of increased survival rates. And somewhere between two-thirds and three-quarters of cases are mild and many are missed, and, as a consequence, it’s called a silent epidemic. So this is an important topic for those of us in pediatrics and in pediatric rehabilitation. Not the least because of bike helmets. Spending time on campus with any of a number of my students riding bikes and mopeds, this is my big public service announcement for the evening and to those online: please wear your helmets. Many of the students that I see are talking on a cellphone, have no helmet, and are either on a moped or a bike, one-handed. This is a reason we have an extremely good transplant surgery program, and it shouldn’t be that way because these kids are putting money into their education.

The brain is the thing that should be important. In this case, though, Garth is finally wearing his helmet, but he’s worried he’s going to get a head injury from the boring teacher. And I hope that doesn’t happen to you tonight. Now, broadly, the mechanism for developing a traumatic brain injury is because of gravity, if you will, and one of Newton’s laws. That is, when an object is in motion, it tends to stay in motion until acted upon by an outside force. And either the acceleration or the deceleration or, in the case of motor vehicle accidents, it’s going to get you. We tend to think of traumatic brain injuries as having an initial impact, but in fact, the brain tends to slosh within the skull. And so you get both an initial impact and a secondary impact on the other side of the skull. That in itself is bad enough.

The regions of the brain that can be affected are very sensitive, tender if you will, and can cause all kinds of disabilities. In addition, though, there are torsional injuries that occur, and there are in fact, there’s bleeding and swelling of the brain. And all of this is bad. It generates both death and disability. With these images, you can see one of the tools we use in emergency medicine, pediatrics, rehabilitation, orthopedics, and neurosurgery, to find out whether we’ve got a bad brain injury on our hand or not. It turns out that about half of the kids assessed for head injuries will get a CAT scan. It makes sense. You want to see inside the brain to find out if there’s a problem. Is there a bleed? Is there swelling? Is there more diffuse injury? And the number of CAT scans that have been used has doubled over the decade from ’95 to ’05.

But fewer than 10% of minor head injuries actually showed trouble on CAT scans. That in and of itself is interesting. Are we overusing CAT scans? Well, it turns out that there’s a downside to CAT scans. That between one in 1,000 and one in 5,000 CAT scans will cause a lethal malignancy in children. That is also bad. So, on the one hand, we have bad brain injuries, and, on the other hand, we have cancer that we’re causing. Trying to find that balance is a project that a group of us in a network addressed a few years ago. PECARN is a consortium of 25 pediatric emergency rooms. It’s the first federally- funded pediatric network, pediatric ER network.

And our goal is to do high quality research in order to help kids in acute settings and eventually in chronic settings. And it’s funded by the federal government through a series of agencies. The network is composed of centers from New England all the way to California. And, happily, there’s one in Milwaukee. And a number of years ago, in fact this was one of the first studies we began to work on, one of our– Whoops, sorry about that. One of our lead researchers, Nate Kuppermann, who’s one of the most extraordinary scientists for pediatric emergency medicine in the country and also one of the most incredible human beings you could possibly meet, we began a project to try and figure out how to balance investigating traumatic brain injuries and minimizing CAT scans. The next three slides are meant to be just visual. Don’t look for the content. The key here is that we brought, we examined about almost 60,000 children, whittled them down to about 42,000, and broke them into two groups.

The larger group we used to try to derive a decision rule to decide what do you do when a kid comes in with symptoms and they might or might not have a traumatic brain injury. Do you CAT scan them? Do you not CAT scan them? And the smaller group we used to validate the decision rule we eventually created. Take away from this slide that we looked at a lot of different symptoms and signs and used a lot of statistics to try and generate the decision rule. And finally the decision rule came out rather like this. We divided it into less than two years old and greater than two years old, and then looked at what was the most efficient way of determining who needed a CAT scan and who didn’t. This was the largest study of its kind ever made, in part because it was used– It was generated through the PECARN network. And the rule that we created was between 97% and 100% sensitive depending on the age of the child you were looking at. And I hope that any of you have children or grandchildren who sustain a head injury that it’s being used in an ER near you. Now that’s all well and good, maybe that helps with CAT scans, but what about actually trying to prevent the disease, the death and disability that come from traumatic brain injuries in children.

We’ve also been looking at this. One of the keys we try to do is a pharmacological intervention. And it turns out so far we’ve had no success. The first focus was on steroids. One of the downsides of traumatic brain injury, as I mentioned, was swelling of the brain. Steroids are used to reduce swelling. It makes sense. We use steroids if you have swelling. As a consequence, we’ve used that for many decades in medicine to try and, we thought, help kids with traumatic brain injuries. Ian Roberts is an extraordinary researcher at the University of London. He ran a huge trial of steroids in traumatic brain injuries that was published in the Lancet, looking at more than 10,000 adults, and it was really clear from that study that steroids didn’t help. If anything, people who were getting the steroids did a little worse. So as a consequence we’re not using steroids anymore. Are there any other opportunities? Well, another friend of ours, Don Stein down at Emory, who’s a bench scientist, noted that when he was studying traumatic brain injuries in animals, particularly in mice, mice and rats. So, rats and mice. And he noticed that the pregnant mice didn’t seem to have as much trouble with traumatic brain injuries as the non-pregnant mice. Now, I think one of it is the natural superiority of women over men. I need to say that because I have a wife and a daughter. [laughter] And it’s true.

But he thought that there must be a biological basis for this too. And eventually he drilled down and determined that progesterone seemed to be the hormonal difference that led to the benefit for pregnant mice. A large trial called the ProTECT III trial followed two previous studies that seemed to show that in human beings progesterone made a difference. And our group was doing a project that was NIH-funded to begin to apply it in children. And then the ProTECT III results came out, and it turned out the progesterone didn’t work either. So we went back to the drawing board. Yes, the flame-out stop sign. TXA is a synthetic molecule that has been used in trauma in other settings. TXA is a chemical that will interrupt the conversion of one chemical plasminogen into plasma, which in the body cuts down, breaks down clots.

And that, you can imagine, would be bad if you’re bleeding out in some fashion. So, stop the bleeding out. It turns out that it may also be useful in traumatic brain injuries for reasons we don’t fully understand. But TXA will interrupt this pathway, and as a consequence, we are– I’m getting ahead of myself– As a consequence, we are looking at running a trial of TXA in children with traumatic brain injuries. I have an NIH planning grant to do this and are hoping to then take it into a randomized placebo controlled trial soon. We don’t know if it’s going to work. We’ve struck out twice. We’re hoping we’ll still be at bat at the end. All right, this is one approach to disabilities, and I’d be happy to answer more questions afterwards.

But where I really spend my time is in history. And when you look at brain injuries and you look at other kinds of disabilities, you’re entering a new world. This is an image from outside our apartment in Paris when I was doing some of my archival work. And the reason I use it is to highlight what I was just telling you and distinguish it from what I want to talk about for the rest of the evening. There are two core models of disability. One is the medical model, that which I’ve just shown you, and the other is the social model. The medical model argues that disability stems from some fundamental aspect of an individual, either an illness or an intrinsic disability that represents a physical condition. Now, that doesn’t mean it can’t be a psychiatric disability or some other sensory disability, but it is in some way physically based on the body. And it is intrinsic to the individual.

It’s part of who that individual is. It can reduce the individual’s quality of life, and it can cause clear disadvantages to the individual. As a result of that definition, that conceptualization, managing a disability really revolves around identifying the illness or the disability, understanding it, and learning to control and alter its course through the individual. I just demonstrated that with the research that I’ve been doing. Right? All of this is about changing the individual’s body. A kid comes in with possible TBI, CAT scan or not? Progesterone or not? Steroids or not? TXA or not? To the individual. The success of the medical model has been rolled out, for example, by the World Health Organization. In 1980, they created a model of disabilities that suggested that you got this linear process of a disease or disorder leading ineluctably to a handicap, in which an impairment is the exteriorized version of the disorder. The disability is some objectified measurement of that impairment, and the social consequence of that linear process are a handicap. Easiest way to think of this is a condition that has been characteristic of human beings since we came down from the trees along with George.

If you look at hydrocephalus, it’s a native condition that we can get at any point in infancy, before birth and infancy. And it’s basically an interruption of or dysregulation of the cerebral spinal fluid around the brain. You can imagine a child with unchecked hydrocephalus would find it hard to sit in school because their head would be too heavy for their neck muscles. Some of you may be having the same problem tonight, but that’s because I’m a boring lecturer and not because of your hydrocephalus. [laughter] But using this model, hydrocephalus is the disorder, an enlarged head is the impairment, the inability to sit up is the disability, and you can’t go to school becomes the handicap. Very logical, very linear. The WHO knew what they were doing at the time. The problem is this is not the only part of the story. For the last time, our son is not backwards, he’s just dyslexic.

It’s a matter of definitions and perspective. The social model of disability argues that even though there can be physical difference, the bigger feature here in whether somebody has or does not have a disability comes from the barriers, the native prejudice and exclusion that society generates itself. It can be intentional. It can be unintentional. And those, though, are the ultimate factors that define disability. That doesn’t mean that everybody is created equal. In some physical sense, we have natural differences. But how we respond to those differences through the built environment, through our institutions and organizations, that’s what it’s all about. Think for a moment of buses. If you’re a wheelchair user or have a broken leg and need a crutch, it can be very hard to get onto a bus before we started creating kneeling buses. With bus architecture, we had created a disability. A social handicap, if you will. And that began to be minimized by this social response of altering the structure of the buses. The easiest way I can get this across is a case. This is a real-world case from the 1950s. A midwife noticed that a child who had been born had creases across its hands, had slightly down-sloping eyelids, and, compared to other kids, it was, what I used to describe in newborn medicine, loosey-goosey, it was flexible. By the age of two, it had just begun to say a few halting words and to stand. To it was delayed, as we would think of it.

And by 18, though, it could speak, though not quite as well as its peers. On this Pacific island without Apples and video conferencing and all the rest of it, this child became a gatherer of firewood, got married, had children, and lived to about the same age as everybody else on this island. Now, this child, in fact, this is not a picture of the child, but this is in fact another child with the same condition, that child was born with Down syndrome. In 2017, a child born with Down syndrome in Madison has a consequential disability for a variety of reasons. But on that island, in the 1950s, there was essentially no disability, and it’s the difference between the social context. The condition is the same, but the context is different. You can imagine that with the social model of disability there are a lot of political consequences, by which I mean little “p.” It is in fact the intellectual basis for the disability rights movement that paralleled the civil rights movement and the human rights movement coming out of the 1960s. There’s a lot more that could be said about it, but I’m not going to go there tonight. I will acknowledge, though, that the World Health Organization, in 2001, said, oh, maybe we screwed up in 1980.

We’re going to recreate our model of disability and come up with a model that takes account of environmental factors, individual circumstances, as well as the health condition to try and define the presence, absence, and nature of disabilities. The downside of this marvelous model, the International Classification of Function (ICF), the original manual that went with the 1980 definition was really small. This one, was we say in Boston, is wicked big. It’s very hard to operationalize this from a research point of view, but it’s far more accurate and just. Okay, so that’s all great, Walt. Where does any of this come from? That’s where the history comes in. I’ve always loved this cartoon. “I’ll need some medical history, ma’am. What year was anesthesia discovered?” You should all be afraid that doctors are going to start doing this. [laughter] The work I’ve been doing– Golly, it’s almost, it’s been 15 years– has taken me to archives across Europe and the United States trying to find information about the clinical experiences of, the scientific investigation and support of, the public policies around, and the social stigmatization and experiences of children with disabilities in western Europe and the United States.

Abraham Jacobi was a figure who was born and raised in Germany, learned what would become pediatrics, and brought it into the United States. And he’s conventionally called the Father of American Pediatrics. In pediatric residency, you are, to some degree, learned to idolize Abraham Jacobi. But Abraham Jacobi was not without sin, from a modern point of view. Unfortunately, for my daughter who was born in St. Louis, this lecture occurred in St. Louis in the year of the World’s Fair. And he was speaking, amongst many things, about inherited conditions that led to disabilities. And he argued that for families in which a man has epilepsy or consumption and chooses to marry, at the time they thought this would lead genetically to the propagation of these conditions, and, as a consequence then, “One half of us should not be destined to watch and nurse and support the other half. Human society in the state have to protect themselves by looking out for healthy, uncontaminated progeny, and laws are required to accomplish this. It is unfortunate but while health and virtue are, as a rule, not contagious, disease and vice are so, to a high degree.” And you can hear the moralism in this and the consequences that came about.

Now, Jacobi was not without resonance with interest at the time, and one of the big motivators around disability was eugenics at the time. Eugenics was not a concept that Charles Darwin had generated, but one of his relatives did. And the principle was in some ways we ought to be able to manipulate the evolution of chickens and human beings to be able to make both better. In the nineteen-teens, in Chicago, a surgeon named Harry Haiselden was called to attend a deformed newborn at its birth. At the time, he decided to allow the child to die, and in rather like– I can use this name with this audience because you’ll all know, Jack Kevorkian, an early Jack Kevorkian at the time– He had a friend who was a reporter with the Chicago American told the story. A newspaper article was written. Harry Haiselden got quite a bit publicity about this, not the least because people were very interested in eugenics at the time. And he also was interested in movies and made a movie about his experience. The movie was called “The Black Stork,” and in the movie, he, I do not know where they found this marasmic child to be an actor in the movie, but he comes up to this child and goes through a thought experiment about whether he should save the child.

He, in the thought experiment, he decides to save the child. He has the nurse come and help him. He operates on the child. At the time it would have made no sense, but that’s the way it was. And he goes through what will happen as this child gets older. Well, the child would still have deformities, still have disabilities, and would be shunned by his playmates. He would, as Rudolph, not be allowed to play in reindeer games. And feeling that social opprobrium, he eventually would turn to a life of crime. He would go to jail, and years from then, when he was left out of prison, he would ask why did he go to prison in the first place.

And he would remember that his mother told him that a surgeon had saved his life. He would go find that surgeon and, with a terrible resonance with what has happened in the United States over the last year and beyond, he would shoot the surgeon. So, in this experience, this thought experiment, rather like Albert Einstein, Haiselden was saying, “Hmm, I am going to be propagating my own death in the future and the terrible experience of this child. Rather, I’m going to let this child pass away.” Now, anticipating George Lucas and the extraordinary special effects that would come in movies, he had an overlaying image of a figure receiving a handkerchief on a wire as the child’s spirit goes into the waiting arms of Jesus. So in this movie, “The Black Stork,” everything ends well because the child is allowed to die, and it worked well for the eugenics impressions of the time. Now, disabilities of a variety of kinds at that time were seen as a center point, the hub of the spoke of many different social ills. And, as a consequence, it is not surprising that the Supreme Court itself, led by Supreme Court Justice… I just blanked his name. That’s terrible. Father and son. Father was an internist at Harvard.
– [audience provides answer]

– Oliver Wendell Holmes, Jr. Thank you very much. Otherwise a very sage Supreme Court justice, ruled on a famous case called Buck v. Bell that the state should be allowed to compulsorily sterilize those who had intellectual disabilities in order to protect the interests of the state because, in this way, we would be able to free the gene pool of such defectives. Our culture has not been without sin, if you will. We exported these ideas to Germany. I had a wonderful movie that, if we have time, I will show at the end, that the National Socialists propagated in the 1930s to make those exact arguments. To argue for what would be a lead point for the final solution and the Holocaust in sweeping up children with disabilities, taking them to concentration camps, and euthanizing them.

In fact, this is part of a wider argument that I’ve been following that over the last 200 years these four countries, amongst others, have acted as a kind of syncytium, a giant cell that’s formed from several to exchange ideas and people around kids with disabilities. And as these ideas have moved, ultimately I’ve wanted to understand how we’ve come to our contemporary ideas. There are many stories that can come out of this work, but what I want to share with you for the rest of the time tonight is the stories coming out of the United States. Now, overall, there are three core themes that come out of these topics. One is numerization, the other is holism, and the third is normalization. These three themes play out at different times in different places, in different ways. But, in the United States, they came out mostly like the following. FDR was famous for being president, for surviving, helping us survive the Depression and World War II, but also for having polio. So having an experience with disabilities.

Finally, though, for his fireside chats on the radio. And in 1934, he gave one that is particularly interesting. [Mimicking FDR] “Modern medical science has advanced so far that “a very large proportion of children who, for one reason or another, have become crippled can be restored to useful citizenship. It remains, therefore, only to spread the gospel for the care and cure of crippled children in every part of this kindly land to enable us to make the same relative progress that we’ve already made in the field of tuberculosis. There are so many more of them than we had any idea of. In many sections, there are thousands who are not only receiving no help but whose very existence has been unknown to the doctors and health services.” Now, despite my horrible FDR accent, the ideas that come out of this are kids with disabilities are important, they are salvageable, and they can be brought into useful citizenship, a concept that I hope we’ll see at the end. One of the effector arms, one of the agents of change for FDR and others, was the US Children’s Bureau, which, in 1940, argued that they were “bringing to light information not heretofore “available for all the states of the Union about the numbers and location of crippled children, the causes of their conditions, and the care such children need, as well as the costs of that care.” Many of these ideas came not from FDR but rather from women again. Jane Addams, who is often seen as one of the pioneers of social work and her programs at Hull House in Chicago, was a great proponent of, if you will, social statistics. Looking at maps and gathering information from surveys, categorizing this data through statistics and understanding how people can be boiled down into numbers.

One of her protgs, Julia Lathrop, went on to become the first director of the US Children’s Bureau. The Children’s Bureau, founded in 1912, the reason for my starting point for the historical part of this talk, became one of the greatest social agents of change for children in the United States. But because Julia Lathrop was, at its heart, a great deal of what the Children’s Bureau did was look at statistics and gathering information. They were not alone. It turns out that in the beginning years of the Children’s Bureau, people were worried about disabilities in children because of eugenics. It was a hot potato. It was not politically good to worry about those topics. So, instead, in those early years, many private organizations went out trying to gather the statistics. The Rockefeller Foundation in New York noted there were about 36,000 cripples in New York, roughly seven in 1,000 inhabitants. Interesting in the statistics, a half were younger than 16, another 13% were noted to have the onset of their condition at less than 16.

So about two-thirds of the disabilities in New York at that time were related to childhood. And one of the conclusions of that report was that “the cripple problem,” as they called it, “insofar as it relates to prevention, is largely one of childhood, and rehabilitation or aftercare is the tool to prevention.” Bob Kelso, who was an executive director in Massachusetts for the Board of Charity in 1921, wrote a report for the Children’s Bureau and argued again that “rehabilitation can do so much for crippled children, and, thus, where charitable organizations cannot help, the state Government is obligated to supervise home and institutional care.” So acting as a kind of antagonist to the images that Abraham Jacobi was offering, and certainly Harry Haiselden, Bob Kelso and eventually the Children’s Bureau would begin to look for ways of helping kids with disabilities. Certainly at this time, charity was the primary agent of support for people of all kinds with disabilities, but, often, they were left behind. Maybe Santa Claus thought nobody lived here. There were a number of organizations, particularly institutions for kids with disabilities, not unlike Tom’s experience growing up. Pediatric institutions for disabilities began in the 1860s on the east coast. By the late last decade of the 19th century, they’d spread as far as Minneapolis and then had grown in numbers by the time the Children’s Bureau was established. Many of these institutions would become seminal in helping kids with disabilities, but they were not alone. There was, in fact, a clarion call that goes out in the 1920s and 1930s for helping children with disabilities.

And one of the lead voices in that clarion call was a senior senator from Michigan, Senator Jim Couzens, who approached Herbert Hoover, then known not for the Depression but as the children’s president, that he should invoke a White House conference on the topic of children with disabilities. Hoover thought about it, knew eugenics was on the decline in the United States, still thought it was a bit of a hot button topic, and decided to, in fact, have a conference more widely on the health of children in general. This he saw as a way of improving the, if you will, the race of the United States, making us be able to walk into our future with greater and greater health. I’d like you to think of this image in comparison to the brief story I told you about what was happening in Germany over the same period of time. Now, the White House conference was in fact not exclusively devoted to children with disabilities but had one quarter of it devoted to that topic, partially as a cloak, partially in order to diffuse more of the interest to help children at large. The Children’s Bureau eventually would become the outcome product for making differences for kids with disabilities after the White House conference. But the biggest change would come about because of the Social Security Act of 1935 and FDR. The roots of the Social Security Act come from Wisconsin, not the least from the economists who were on faculty at UW at the time. One portion of the Social Security Act, Title V, was devoted to allocating new resources from the federal government to help children with disabilities.

In 1935 dollars, the total amount of money between the amendment 39 and the original proposition was about $4 million. What this did is inspired physicians, nurses, social workers, therapists, and any of a number of support specialists to increasingly work to help children with disabilities. How to distribute that money was a critical question, though. So the Children’s Bureau was still figuring out where these kids. Do we need to put more of the money into the home of a powerful senator or a powerful House of Representatives member? Eventually, they counted up that there were 373,177 children. Is this number accurate? No. But the critical thing about this change is that these children had been turned into the language bureaucracy. They’d been turned into numbers. Numbers that could then be manipulated and used to massage dollars that had been allocated.

So this is where the numerization process comes from. Gentlemen, the operation of these complex computers is based on very simple counting technique. This is how governments work. Okay, so that’s numerization. What about this holism story? Holism comes in part from the idea that children with disabilities are not easy to treat. Whatever conditions they have are semi-permanent, if not completely permanent, and not one heroic physician can change that. A character early on in the story who recognized that quickly was a figure named Bronson Crothers. He was a general pediatrician in Boston who eventually got some supportive training in neurology and became the first child neurologist at Harvard. Some of his early work was on birth defects but eventually settled into cerebral palsy as his big topic. He created a multidisciplinary team with a variety of nascent specialties to try and work with children, and then eventually he trained other physicians in this model.

And, in fact, George’s hospital was Boston Children’s Hospital, which, even then, I like to say, maybe had certain Wisconsin affinity, but it was certainly outstanding in its field. [laughter] It is routinely considered the either number one or number two children’s hospital in the country. Fortunately I was there when it was still number one. But, as I say, they liked their cows back then. Now, these are all research buildings. There are no cows to be seen. Crothers convinced the leaders within the hospital that children with disabilities needed more support, anticipating what would be seen with the Social Security Act. He reallocated both space and dollars to create gymnasia in order to be able to rehabilitate children with disabilities, wrote textbooks and published many articles on the subject, and eventually created what I consider a disability calculus. On the one hand, he would recognize that if a child had an acute neurologic condition, you treat it medically and you’re done.

On the other hand, he would consider that a fatal neurologic condition you would just manage the child medically until they died, and that would be the end of story. For the three-handed rabbi, the third hand would show that if there were functional deficits distinct from acute or fatal conditions that would involve motor findings, mental findings, and social abilities, you’d have to approach the entire child. You couldn’t just treat them with steroids. You couldn’t just give them antibiotics, which didn’t exist then. You had to have a more holistic approach. So that meant bringing in teachers, the parents, social workers, physical therapists, occupational therapists eventually, and so on and so forth. And, again, redesigning the environment around these children to help them thrive. Crothers was the lead for that fourth part of the White House conference. He brought this holistic multidisciplinary mechanism straight into 1600 Pennsylvania Avenue and then out to the Children’s Bureau.

The marker then for all interventions thereafter was interdisciplinary, was holism. On the one hand, the federal government was shrinking children down into numbers. On the other hand, it was expanding them into the whole child. These two competing processes played out against the third thing that I pulled out, and that is normalization. The story starts with a character in Holland, Arthur Van Gehuchten, which I describe for Tom there. And Van Gehuchten was in fact a neurologist, one of the progenitors of the field in the 19th century. He was known for his interests in audio visual clarification. This image, written with its subtitle in Latin because of a student wagg, who was obviously very learned, shows Van Gehuchten showing a group of learned physicians movies. These are some of the earliest medical movies to survive in the 19th and 20th centuries.

And what Van Gehuchten was doing was demonstrating abnormal findings of a neurologic variety, including disabilities of wide character. You can tell that there was a difference in sense of physical propriety at the time. But this was how physicians examined bodies then. It’s intriguing to me that this nun is allowed to keep her habit on while she’s being examined, and obviously very appropriate. And many, many other images come out of this, including children. Now, the notion of using film to study the body, to study the abnormal body, quickly crosses the Atlantic, lands in the Henry Ford Hospital in Michigan, and, in particular, is applied to children. I don’t know if this is going to show, and I’m not sure… There is one great– Here. This child, who has a neurologic deficit.

you can just see the background image is a Model T Ford. This was early product placement in medical and scientific movies. Now, this means of studying, again you got to love it, and I found these videos in the Library of Congress archives. It’s amazing to be sitting there, an otherwise interesting setting, and come across these images. So this early cinematographic analysis was deployed over and again in a variety of ways to examine children and adults with disabilities. It was particularly powerful for children because there was another big change that was happening in the social scene, namely the growth of the American middle class and our increasing focus on children as luxury goods. So if you imagine in the 19th century large farms in Wisconsin with large families, children would be units of labor. They would be loved, but they would still be expected to work. Increasingly, as we move into an urban context, children become objects not of labor but of expectation for the future.

And this transition from the 19th into the 20th century sees a growth in the middle-class enjoyment of children for what they are. Much, though, as you would expect of an expensive sports car, you want to see that car, how fast can it go from zero to 60. You want to know how quickly your child can excel. In order to know that, you need a guide. You need somebody who’s going to go on television and tell you how smart your child can be. Now, into this story then comes a Wisconsinite, Arnold Gesell, who was born in Alma, Wisconsin. Here you can see him playing in the local cornet band. He was born at a time when Teddy Roosevelt was a big deal. And so riding up San Juan Hill with the Rough Riders was a great thing to do.

Gesell became a psychologist, in fact child psychologist, and eventually began to enter the research field exploring children with disabilities in a variety of ways but increasingly got interested in understanding the normal development of children. He eventually went to Yale, convinced Yale to pay for him to get a medical degree, so he became another MD PhD, and created the Yale Child Development Clinic. Now, the core of the Yale Child Development Clinic was, in fact, not to neglect normal characteristics, but to focus on them instead of looking at the pathological. He created a large space, which for its time, was extremely high tech. That high tech all boiled down to having a group of researchers standing behind a screen. A screen that was painted black on one side, towards the researchers, white on the other side. The white side would reflect light. The kids wouldn’t see the researchers. The researchers could observe them as voyeurs and see how the children responded to their environment.

Eventually Gesell learned that he could photograph children as they developed and created an atlas of typical infant behavior. He eventually recognized that the advances Van Gehuchten and others could be applied to children and normal development and created a video dome at Yale in which a video camera would be placed here, the screen would prevent the child from seeing what was around them, and children would be subjected to various stimuli to see how they responded over time. He then employed a group of women to analyze those films frame by frame in order to be able to characterize normal development. Those movies, some of which are still in the American Psychological Archives in Ohio, became extraordinary teaching tools, both for young physicians and psychologists but eventually for parents. Again, think about that creation of the child as a luxury good. How fast can my child go from zero to Harvard? Or, even better, Yale or Wisconsin. [laughter] The films eventually, in an early version of Dr. Spock, became tools to teach at PTA meetings, at churches, at parents’ groups. Very quickly Gesell became known in his publications for having the new bible for young mothers. He became known as the guru of child development, but, equally, what he was doing was creating the expectation of normal development.

What can I expect my child to do at one? At two? At five? At 11? Sit through a lecture and not make noise. [laughter] There were some downsides to this. As one physician complained at the time, a doctor having parents come into his office, the mother would have a McCollum, which is, at the time, one of the nutritional manuals, in one hand and a Gesell book in the other, and she was often more trouble than was the child because the expectations of the parents, anticipating what we would see with the Internet, became troublesome for the pediatrician. Nevertheless, this became very popular. It was a great marketing tool at the time. Time magazine, in 1940, called him the Columbus of child development. In 1956, he had become the senior biographer of the normal child. But in this we see the growth of focus on normalization. How is a child supposed to be behaved normally? The flip side of this is the anxiety of parents that their child is not normal.

And so while we see a growth of the normal, we also see an acceleration and amplification of the abnormal and a growth of fear of disability. Gesell would, in fact, not stop focusing on kids with disabilities. He would regularly give lectures about children with cerebral palsy and other conditions. This is another lecture from the Library of Congress. But he, along with some of the other figures I’ve been mentioning, formed a nexus of scholars around kids with disabilities in the United States, who interfaced with the old world in order to change the experience of kids with disabilities. One outcome of some of what I’m talking about is our changing conceptualization of how disability occurs and its impact. So up until the middle of the 20th century, parents were often blamed for the crippled child. And most frequently, as you would expect given the misogyny of our culture, it was the mom who was blamed. Over the last 50 years, though, there’s been an increasing shift.

No longer do we blame parental poverty or illness or alcoholism as being the misbreeder. Using attitudinal studies and behavioral surveys and health services research data, we’ve increasingly argued that the child themselves with a disability is pathological from family. So bad is this, that in 1981 a new disease was coined: parentaplegia. The condition is such that if you have a child with a disability in your family, you’re more likely to lose your job, to remain geographically static, to get divorced, and to have any of another social ills coming out of it. So we move from blaming society, I suppose, but really the parents, to now blaming the child with disabilities. So some of the stories that come out of the US picture in history of kids with disabilities is one of standardization and holism but also unintended consequences. So where can we wind up? Wow, I’m doing pretty well tonight. Do not read this. The bottom line is that we see, over the course of the time period I’m talking about, a conversion to interest in governmental support for children with disabilities. But in order to make that happen, we have to convert kids into numbers, the language of bureaucracy.

Of course, politics then enters and you get lots of interesting stories that I’m not sharing with you tonight. Equally, though, the holistic focus on kids requires the birth and acceleration of a variety of different disciplines, whether it be the therapies, PT, OT, speech, or pediatric nursing and on and on. But the early 20th century, that then necessitate the formation of an interdisciplinary team model that can allow for the collaboration of all these different figures. Innovations, I would argue, in caring for kids with disabilities is often antecedent to the innovations we’ll see with adults. And this is an argument that runs contrary to most of the history of disability that focuses on war as the great propagator of innovation. Certainly by the late 20th century, we see a negative ideological effect of kids with disabilities on families and those around them, but no matter what you say about this, it’s clear that kids with disabilities shape the world around them, and in many ways they’re quite potent. There are, however, two overall ethical themes that come out of this story. On the one hand, contractarianism, the social contract that says if you are born into the human community, we have an obligation towards you and you towards us. That runs in contrary to utilitarianism that argues that in the face of limited resources we need to be able to maximize the greatest good for the greatest number.

These two philosophical principles often come directly into contact. What I’d like to suggest, though, and fascinating– So this slide should have a nice tan background with black letters. And it’s not working. This is Amartya Sen, who won a Nobel Prize in economics a number of years ago. In 2009, he wrote an extraordinary book called “The Idea of Justice.” And one of the arguments he makes is that, amongst other things, that there are three core groups in our society that have been marginalized: animals, and people who are not national citizens, and people with disabilities. Now, the animal rights movement was a response to John Rawls not quite knowing how to deal with the absence of animals. We are continuing to struggle with citizenship and the notion of being able to support those who do not formally participate in our local governmental processes. But people with disabilities represent 600 million people around the world, 400 million of whom are in low, are in developing world settings. And one can argue, as Sen does, that these people in fact don’t, they’re not just born into poverty and accelerated in poverty.

It’s not just the experience of poverty itself, they have more need for resources than people without disabilities, and therefore a just society should find some way of helping. All of these stories fall down against the backdrop of changing governmental structures. I’m a medievalist. I think everything interesting starts in the Middle Ages except for this. As the Middle Ages fall, as the Renaissance rises, as we see the black death coming through and destroying many of the social institutions that become so important, as the Catholic church struggles with enlightenment principles, we see a reconfiguration of the rules that bind us together as a society, and many of those rules are instantiated by philosophers who will argue that different subgroups have different needs. Amongst those many subgroups are veterans, the disabled poor, which through the lens of the enlightenment will force governments to look at biopolitics, bioscience, philosophy, ethics, and economics to figure out how to redistribute resources, if at all, in order to help the deserving and undeserving amongst us. But two of the greatest forces on that lensing are work and cost. And you can see that with contractarianism and utilitarianism playing out. I hope in this story I’ve begun to lend a face to these faceless children and their families with disabilities.

I hope that face becomes increasingly heroic. And, if nothing else, at least more powerful than you might have thought before tonight. I should thank the many groups that have offered funding to my work, and certainly the many people across Europe and the United States, archivists and librarians of who helped me. And I’d like to close with one last sequence of images. Outside another of our apartments in London a number of years ago there was an extraordinary playground. This was just a random playground in London, but it was designed with a merry-go-round that was smooth against the surface of the ground. And it was designed for people with wheelchairs as well as those without. So without that change in the built environment, a disability, a handicap was created for kids who were wheelchair users. It was right near another extraordinary playground on the grounds of an old charitable children’s hospital in London that had also been designed to take into account children with sensory impairments as well as physical impairments.

It was extraordinary because that playground also had animals that really don’t care whether you have a disability or not. And with that last sequence of images, I will end. This is how my daughter told us when we were in London that she was tired of us giving her lectures. And I thank you for listening to my talk. [applause]