- 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 a  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   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  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 wil  -   (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 protégés, 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 th  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