Disability Studies Lecture Series—The Geo-politics of Disability

Lecture Transcript

David Mitchell, Executive Director of the Institute on Disabilities at Temple University introduces the lecturer:

Thank you for all coming to year two of our lecture series "The Geo—Politics of Disability" sponsored by the Institute on Disabilities at Temple University. It's great to have such a good size crowd already this early in the year. I remember last year we had to really kind of build up some momentum until we had significant numbers so I appreciate everybody who came out in order to make the first lecture in the series this year a success. The concept of "The Geo-Politics of Disability" is to feature new scholarship in disability studies around the social cultural and historical analysis of people with disabilities, their experiences, the exclusions and restrictions they find themselves under and our lecture today is particularly notable to that in that Alison Carey, who used to work here at Temple and at the Institute, so we're honored to have her back and it's nice to have a lecturer who already knows the layout and can find the lecture hall herself.

She's just published her first book which is called On the Margins of Citizenship. Alison is an Associate Professor of Sociology at Shippensburg University, one of our neighbors. The book itself is an effort to trace out the history of experiences of people with intellectual disability in the United States. It is particularly significant in that provides that wide historical over view, one, and in order to understand the situation and contemporary predicament people with cognitive disabilities, one needs to understand where that population came from in the countries past, how it was formed, usually by entities outside of the people themselves, and then how those people came to navigate the category within they were placed that their inclusion to some extent and their exclusion to a greater extent. I like the concept of the title On the Margins of Citizenship because in identifying her book in that way, Allison helps us understand the margins is a location, that the concept of rights in and of themselves does not necessary secure that people will be able to exercise those rights and I think her historical analysis is a nuance look at how even the existence of a right in culture or on the law books doesn't necessarily mean that people have access to exercising those rights and that her historical studies rather significant for that. She is a member of the Society of Disability Studies board whose annual conference will be here, next year, from June 2nd to June 5th and we hope that all of you attend that and help us host that significant national organization at Temple University.

I also wanted to mention that we have on September 23rd an Australian theater troupe coming to Temple that features a street art performance by people with disabilities, about their experiences. It's going to be in The Underground room over at the student center at 1 p.m. on September 23rd and we hope you will come over and help us make that a success as well.

But for today, please join me in welcoming our guest Allison C. Carey and the celebration, really, of the launch of her new book, On the Margins of Citizenship. Thanks so much Alison.


Thank you so much for having me here. Thank you David for the invite and the wonderful introduction and thank you to Temple University Press who has published my book. So, I have roots here in Temple and it's a fabulous place for me to come and really celebrate the publication of my book. As David mentioned my book is called On the Margins of Citizenship-Intellectual Disability and Civil Rights in Twentieth Century America. In the book it covers a hundred years—we'll see how much I can pack in 45 minutes to an hour. The book grew out of my experiences as a sibling. My sister has downs syndrome and we grew up as what I would call an "ARC family." We were always involved with the ARC, which was a parent organization. My sister went to a special school and it wasn't until graduate school that I really heard about the disability rights movement, the ADA, and starting think about how the disability rights movement connected to people with intellectual disabilities in terms of self-advocacy which was beginning to emerge more and more in the 90s, but also in terms of somebody like my sister and her real life.

And so, the book is my way of going back historically and thinking about how did ideas about intellectual disabilities and civil rights evolve over time and how did we get to where we are today, which is much better than where we were in 1900, but still not a great place, I would say.

Let me begin by talking about some of my key terms. Intellectual disability is seen as a condition involving limitations and intelligence and social adaptation that begin in the developmental period. I treat it as a contested social construct. What that means is that there may be biological basis for intellectual disability, like I said, my sister has Downs and there is a biological basis to that, but it also is contested socially so that the labels vary through time. The assumptions about what intellectual disability is or isn't, the associated traits the causes of it, the treatment of it, all of that varies dramatically over time.

The other key concepts that I'm going to look at are citizenship and rights. Citizenship identifies those who are members of the national community and it establishes the expectations for relationships among citizens, noncitizens and the state. Rights then constitute a resource of citizenship. They provide a tool to citizens to pursue their self-interest and influence others— to identify someone as a respected member of the community. They're used, or not, alongside other resources. So, they are not the only way that you influence people-people use money, their prestige in trying to influence people. The exercise of rights is a dynamic process in which rights must be claimed, negotiated and used. Not only is this process dynamic, it's also inherently relational. Rights are important in our society because they are a form of power over other people. They potentially transform the way we understand the expectations that people have of us and our obligations to each other. They substantiate demands that people need to give us, particular opportunities, particular liberties and they alter the way people perceive each other and the identities they can claim. Now there's many ways to think about rights and the book goes through various theories of rights but the dominant one in America is something called liberalism or social contract theory. According to social contract theory, or Liberalism, those who exercise rights are supposed to be autonomous and rational. They are supposed to have the competence to understand what's in their best interest and they are supposed to be free to pursue that.

Much of the history that I will go through, what I'm going to show you, is folks playing with the ideas of liberalism to either include or exclude people with disabilities. According to Martha Minow, the assumptions built into liberalism, these assumptions of rationality and autonomy, lead to what she calls a dual track legal system. So that people who are seen as rational and autonomous get civil rights and people who are not rational and autonomous, people who are dependent and irrational, get protections and restrictions. But folks with intellectual disabilities have never been clearly on one side of this supposed dual track or the other. At times they have been seen as citizens with rights— at times they haven't. At times, they've had access to some rights but not others. We've emphasized some rights over others. Courts historically and today, very tremendously in the way they interpret intellectual disability and the way that they interpret the rights offered to this population, so that it is rarely clear whether the rights will be formally upheld or not.

What I would like to do in my talk today is really highlight two key points. First, through time we see various constituencies based on their relational interest creating and fighting for very different ideas of rights for people with intellectual disabilities and in doing so they offer different interpretations of intellectual disability and the tenants of liberalism. Second, even after this civil rights perspective becomes dominant, rights for this population remain ambiguous for several reasons because of the uncomfortable fit with liberalism, the multiple interpretations available of intellectual disability and as well as of liberalism, the denial of autonomy to this population and the real world context, in which rights are negotiated.

So, those are the two things I'm going to try to highlight today.

Let me then start with the first point by laying out some of the many understandings that have existed regarding the relationship between intellectual disability and civil rights. So, I'll start in early America. There's a little picture of colonial America on the screen. Before I talk about colonial America, let me make a note about terminology. As I mentioned, as a contested social construct, ideas of intellectual disability have varied tremendously and labels have varied tremendously. So we see labels like idiocy, feebleminded, mental retardation now intellectual disability. Those don't all mean exactly the same thing. They carry different ideas embedded in them, again about what people with intellectual disabilities are like, who fits in that population, the size of the population, so as I go through the history, I'll use the terms that were used in that history, in that historical era. I do not do it to offend, I do it for historical accuracy. So, bear with me on that.

In early America we see the development of liberalism. It's rooted in our English history and the good citizen is portrayed as rational, autonomous and morally upright. It's created in part in contrast with what comes to be known as idiocy. Folks considered idiots were considered incompetent, dependent and deviant and faced rights restrictions on those basis. However, very few people in early America were actually defined as idiots. The courts used a very stringent standard, typically, where you had to be without any understanding or self-awareness. So, they saw this as very severe disability and an uncommon disability. So, while you could have your rights removed most people who are defined as intellectually disabled today, would not have faced the restrictions that and actually many of these restrictions are on the books still today, where folks could be restricted from the rights to contract, to marry, to vote to serve on a jury.

More over the restriction in this time period are seen as tools to be used when problems arose. So somebody wants to make a contract and their family is worried that they don't understand the basis of the contract and they move forward and use this kind of restriction either to try to protect them or they don't want that contract being made. They weren't seen as mandates to be systematically applied to all people categorized as idiots or folks with intellectual disabilities. Individuals in early America perceived little threat from intellectual disability and saw little need for extensive control mechanism, more importantly no groups saw no systematic gain to be had from the exclusion of all people with intellectual disabilities. Most commonly, the rights restrictions that people faced were informal through their family and their communities. Therefore access to rights is highly variable. It wasn't primarily dependent on one's IQ, it was dependent on your family and community and what they thought you should or shouldn't do. It was also, especially in this time period, highly dependent on things like gender and race.

Things changed significantly in the late 1800s when we see the emergence of eugenics. Eugenics is defined, most simply, as the study of population improvement. It emerges in a time of tremendous social upheaval. There's the industrial revolution going on, immigration, racial and gender hierarchies are being challenged and eugenics quickly devolves into a pseudo-science used to marginalize folks who are defined as social undesirables.

Eugenicists argued that a wide variety of traits were genetic and that people who were for instance poor or criminal according to eugenicists were biologically inferior and those who were wealthy and law—abiding were biologically superior, in essence providing a biological explanation and defense of the stratification structure or the system of inequality. Eugenicists paid particular attention to the idea of feeble mindedness because they believed that low intelligence caused many of the other social problems such as poverty criminality sexual deviance and because they believed it to be a genetic condition they believed it could be inherited and they believed it could increase rapidly and they thought that folks who they defined as feeble-minded had higher birthrates later that turned out not to be true, but that was the signs of the day. And so they saw this kind of spread of an epidemic. Moreover, they thought the epidemic couldn't be stopped by education or environmental or social programs. It was a biological disease. Again, this was their interpretation and so the nation needed to prevent the spread of feeblemindedness through things like institutionalization, segregation, marriage restrictions compulsory sterilization—a broad range of policies like that.

Here I bring in the idea of relational interests. Why did feeble mindedness become such an important idea for Eugenicists. In contrast with early America where there weren't really groups that saw anything to gain from systemically restricting people with feeblemindedness, now groups did see in their interests. There are many groups that hopped on the eugenics bandwagon. I'm only going to briefly talk about a few. Physicians and institutional superintendents have been highlighted as one of the groups that had the most to gain from these restrictions by building big institutions, through instituting rights restrictions, physicians and institutional superintendents created a big institutional system that they would then control, it expanded their clientele, it made them able to present themselves to society like they were heroes saving society from this big threat. And it really legitimated the power they wielded. They weren't the only group by any means who encouraged the restrictions of the folks labeled as feebleminded, for examples, we can look at social workers. In the early 1900s, again, we're under going industrialization, immigration rising crime rates and social work is emerging as a field. And they are trying to solve the problems of urban America. In their literature, you can see the theme that their case loads are being clogged by un-rehabilitative cases. There are people who can't be helped through these social programs, or at least not as easily helped and so social workers worked alongside medical professionals to channel those folks out of the community to make their jobs easier and their success rates higher.

We see similar things in education. We have compulsory education made mandatory in 1918. The schools are flooded with a variety of different kids and the educators weren't well trained to deal with all those different kids, so educators, at that point start weeding. There are kids are hampering the progress and creating inefficiency and again work with the medical professionals to channel those kids into institutions. Even if we don't say purely out of self—interest, these professional still saw that felt they had this professional role to play and many medical professionals I'm sure actually believed that people would benefit from institutionalization, from training, because it is embedded in their medical model. But it is still coming from their perspective. Even though folks saw it as in their interests to restrict rights, how are they able to do it? How are they able to expand all these rights restriction and create these institutions for a group of people that were not historically discriminated against, at least to that same level. They play with the ideas of liberalism as well as the ideas of intellectual disability to under cut traditional civil rights.

I mentioned that in early America they used a stringent standard but according to Eugenicists, let's look first at with they do with the idea of incompetence. They say early courts looked at skills and they looked at whether people had an understanding self—awareness. Eugenicists argued no, that's not good enough. This is a biological disease. We can assess it through IQ tests and lineage and if someone has feeblemindedness, they must be restricted, because they could potentially bear children, they could spread this to the next generation. So they brought in doubt what was considered incompetence and the importance of being incompetent, the threat of being incompetent. They also played with the idea of dependence. This is when the welfare state is emerging. As I mentioned, social work is growing as a field, social programs are growing, and so for the first time, instead of dependent on their families or local communities, people with intellectual disabilities are being defined tax burden and Eugenicists are arguing that they were dependent on good, upstanding tax paying citizens. We still see a lot of this rhetoric today and that those good citizens have a right to restrict the opportunities and the rights of others. I don't talk about it much in this talk, but a key thing that goes through history is this idea of seeing rights in conflict, that the rights of people with disabilities are seen as in conflict with the rights of people without disabilities and you can see that there in this tension between taxpayers have a right to restrict other people.

They also plan the idea of deviance. The state had long been seen as justified in restricting the rights of people who had committed crimes. What Eugenicists argued, in the words Walter Fonald, was, quote, every feeble minded child is a potential criminal. There's a slogan to live by, right?

Again they saw this as genetically inevitable and so because the state was seen as legitimately able preserve stability, to protect themselves from deviance, they could then restrict the rights of people who were defined as feebleminded.

In doing this, then Eugenicists dramatically expand the legal interpretations of incompetence, dependence, deviance as well as disability so there this big range now of people labeled as feebleminded can lose their rights and be subjected to a pervasive system social control, both inside and outside of the institution. To note we see a lot of those early American laws actually still on the books, laws that use the term idiot. We don't even know what that means anymore, in our context, but they're still on the book. We also see a lot of these eugenic laws still sitting on the books and the relevance of them is often unclear. I'm going to move us forward in time. In the 40s and 50s, we again see new ideas about the relationship between intellectual disability and rights. This time primarily geared towards trying to justify or demand the delivery of services in the community and/or to improve services being given in the institution. Even at what they would consider their most successful, Eugenicists never segregate all the people they wanted to. Too costly, too many people-they cast their net too wide.

As institutions faced over crowding, long waitlists, tight resources, superintendents began to alter their rhetoric about who needed to be institutionalized and now they began suggesting that indeed folks who they labeled as feeble mined could work, could marry and adjust in the community. Also by the 40s and 50s social work had stabilized as a profession and they are reframing their role in terms of helping people with disabilities in the community. Educators have stabilized the education system and now are expanding programs for children with disabilities. Now professionals become increasingly interested in helping people who are going to be in the community because there is a realization that people are going to be in the community whether they want them there or not. How to justify them? They rely on what I call loose rights rhetoric. And we see a lot of this in activism where people talk a lot about rights without necessarily thinking about liberalism or without necessarily thinking about the legal and understandings of rights. Everybody throws out, I have a right to this or I have a right to that and we see a lot of this in the 40s and 50s but they do also play on liberalism in a more intentional manner as well. What they claim is that... and now the rhetoric, the label switches again the label is now moving toward mental retardation. They argue that people who they are calling retarded deserve services because they can become rational, productive citizens and so they have the right to the services to enable them to access citizenship.

A slew of articles come out in the 40s and 50s documenting the potential success of people with retardation but the argument has a double edge. Because, it's based on this potential to be a productive citizen and so especially early on in the 40s and 50s what we see professionals doing is dividing the population. They are saying OK, these folks who I think are going to be self-sufficient, we will give them rights, the other folks, they are still going to be institutionalized and restricted. We see this in education, we see, an expansion of special Ed, but very clear distinctions being made about who's able to access special ed and who's not. We see it in sterilization programs, which are still ongoing in this time even though eugenics is somewhat discredited at this point, but sterilization programs continue. There is one article by a social worker, Ainsworth, and he's basically laying out who should be sterilized and who shouldn't be. And so one of his examples is this woman who is married to a man who has a well-paying job, she has a house, she keeps it clean she can marry, according to Ainsworth. She can have children. Another woman who's in an intimate relationship but not married— her husband is abusive, he doesn't have a good-paying job, they don't have clear social supports. According to Ainsworth, she's a good candidate for sterilization. So again, IQ, and he actually makes the point, these are women of the same IQ. It's not primarily IQ that is the deciding factor. It's these other criteria, of are they going to be productive or are they going to be well adjusted according to our norms.

The understanding of rights and disability here is different than that put forth by Eugenicists but it is still rooted in professional interests. As they are using this view of rights to justify an expansion of community services to the potentially productive, but still positioning themselves as the experts and the gate keepers to determine who is going to get rights and who is not. At the same time parents get into the political game and you see the picture on this slide is an early icon from NARC the National Association for Retarded Citizens. It's what it was called then. Now it is the ARC.

Professionals are dividing the population at this point. Parents need all of their children to be eligible for services. Just because their child may not be self-sufficient, doesn't mean that the parent doesn't need care for their child, services, so parents need to think about this differently than professionals and they do. To be more inclusive they lean towards human rights rhetoric arguing that all humans deserve access to the care they need. The problem they quickly confront, however, is that America has little precedent for human rights. We still don't have rights to healthcare, we sill... we don't have rights to treatment, to jobs, to income supports. So, trying a human rights approach is difficult in America. In lieu of support of human rights, parents instead reinterpret liberalism once again. Where as eugenicists had defined people with disabilities as incompetent and dependent, and on that basis restricted their rights, parents said yes, this population may be incompetent and dependent, but on that basis they deserve rights and this is where we see the emergence of the special child narrative, that like children have particular rights to education, to care, to protection if they need it and they draw this parallel that rather than restricting people, we need to take care of people. This also has a double edge. Parents are expanding out the population. They are trying to access rights to community services as well as improve services in the institution, but they are doing so by categorizing an entire population basically as incompetent and dependent. Not surprisingly then, parents in this era rarely fought for typical adult civil rights, like the right vote, to marry, bare children, and keep their children. It wasn't their primary concern. It wasn't their understanding of what their children needed and it didn't fit with their political strategies. It's not until the 70s that parents and advocacy organizations take to the courts. Inspired by the successes of other civil rights movements like the African American civil rights movement and frustrated by their own lack of success, parents' movements had done a tremendous amount but it is very variable based on the community you were in. They were trying to fund raise and fund this program and that program. So, it wasn't a coherent system. Other civil rights movements like that for African American and women, argued they deserved the same rights because they were essentially the same as other citizens in the eyes of the law. They were rational and autonomous citizens regardless of race or gender. When parents took to the courts though, they were primarily doing it as a tool to secure education, treatment, and community services. As already mentioned, treatment and community services were not typical American civil rights nor did parents necessarily see their disabled children, whether minors or adults, as capable of autonomously exercising rights, so they adapt a civil rights frame work. They say, yes, people with mental retardation should have the same rights as everybody else, but they argue a couple other things. They argue that the population should have group specific rights because they have group specific needs and they argue that this population may need some restriction. They may need some additional supports and training but that they should follow the model of normalization in the least restrictive setting. These become very important ideas, especially the least restrictive setting. In other words, people labeled as retarded should be placed in the least restricted, most normal setting possible because that is where they would best learn to be productive and well-adjusted citizens.

The fight to guarantee public education was one of the first legal battles parents took on and the model of civil rights worked quite well. But education is unique in some way. Education was already an established right unlike the right to treatment. It is also a right of children. There is no expectation that folks will be autonomous or rational to gain access to education. Furthermore, education is also largely a restrictive setting. You are going into someplace where you are supervised for eight hours of the day. It is not a setting that grants autonomy, or at least a lot of it. This isn't to dismiss the importance of education. It is obviously very important, that folks get the right to education, but it isn't unique. Early court cases for the right to education were quite successful leading to the passage of the Individuals with Disabilities Education Act, called IDEA. In IDEA, we see the acceptance of the civil rights model. It gives all children with disabilities the same right to education. It also gives them... well, it is supposed to give them the access to the same right to education and it also gives group specific rights to accommodations and individualized education, as well as potentially a longer period of public education and it has this idea of the least restrictive environment. There may be some need for separate training but it should be done in the least restrictive and most appropriate way. There are many problems that have emerged from the way parents have made the civil rights frame. I'm going to talk about a few them and then we will leap forward to the ADA.

The ideas of normalization and least restrictive environments were essential components of this frame and they serve to suggest that people of varying abilities should be allowed to exercise a level of rights compatible with their skills. However, the IDEA also said some degree of segregation is also justified and it left professionals to determine...again, it left professionals as the gait keepers. Who would be restricted and who wouldn't and at what level. Professionals often have their own interest that they are following as well as professional models of what is in children's best interests or other peoples' best interest. Despite the intent, we see the growth of tremendous systems that rely largely on segregation and specialization such as special education, sheltered workshops, special recreational centers, day centers, group homes. In these systems, typically, the authority rests in the hands of professionals and people with disabilities are offered little choice. The presumptions of the least restrictive environment also just as liberalism can be manipulated, and used as a resource, any of these ideas can. Margaret Summers calls it free- floating resources. And so, we see this idea of the least restrictive environment taken by groups like the Voice of the Retarded who advocate for continued institutionalization. And they use this idea to say this is the least restrictive environment for some people. That institutions are the appropriate treatment for some people and they found support even as high up as the supreme court. I will talk about that and the Olmstead decision in a few minutes.

Some other issues, it is frame worked well for education. I will talk about the right to treatment in a few minutes. It never works quite as well for the right to treatment and it doesn't work as well for other rights, so we see advances based on it. It is a huge leap forward but it doesn't really get us where we need to go. And at this point parents are still really stressing social rights, related to the delivery of social services—education, treatment, community services, rather that happen talking about people with mental retardation, as they are called at this point, as autonomous adults as folks who can exercise the right to vote, to marry, to contract. So, whereas the African American civil rights movement worked to ensure access to the vote, freedom from discrimination in employment, freedom to marry across race, through the 70s and 80s, parents are paying less attention to these types of rights.

One of my main points is that various understandings of rights and disabilities-first of all, there are many interpretations —they are created by different constituencies, really to pursue specific goals. This isn't some big idea that someone has about rights, that is a coherent narrative or framework. So in the early 1900s, physicians and educators see rights restrictions as a path to increase their professional prestige and success. Here parents are using rights not necessarily because they see their children as autonomous rights bearers, but as a political tool to fight primarily for services enhance the quality of life for their children. Rights activism really is a means to an end not an end in and of itself and the view of right and disabilities shifts with the end.

Let me jump us forward a little more getting us basically close to present. In 1992, tremendously important things happened. Again, I am going to cover them really briefly. But we have the rise of the self—advocacy movement. Of course, it begins before 1990, but if 1990, is when self—advocates for the first time in the first North American "People First" conference. And the next year they voted to create Self-Advocates Becoming Empowered, (SABE) the United States' first self-advocacy group. Whereas parents and professionals in the 70s had taken a cautious stand on autonomy, SABE stridently supported self-determination. According to SABE, and in keeping with the broader disability rights movement, all individuals could and should exercise control over their lives. Just because one needed supports, did not make one dependent. Many of us use supports. I use baby sitters. I use a whole range of supports to get through my daily existence. They argued that the need for supports should not diminish the right to make choices. So here, they are reconceptualizing autonomy, yet again. Nor were supports the same as provisions or professional directed training. Supports were to be selected and had controlled by people with disabilities. Explaining the idea of self-determination Speaking for Ourselves, a Pennsylvania self-advocacy group lists four principals— the freedom to make choices; authority over one's life and services; supports available to enable one to participate in a meaningful way; make these choices and responsibility.

SABE's emphasis on choice and self-determination stood in stark contrast with the institutional and agency run models of most service providers. 1990 is also the year that the Americans with Disabilities Act is passed, which forbids discrimination on the basis of disability. We could do many hours just on the ADA alone. It's built on the civil rights act and prior disability legislation and it offers a pretty remarkable new paradigm of civil rights. The ADA recognizes that the same treatment does not always offer equality. It instead argues for differential equality and places obligations upon social institutions, their leaders and everyday citizens to provide reasonable accommodations to ensure equal opportunity. The ADA envisions all citizens as situated within communities that shape our access to rights and suggests that we all have mutual obligations to each other to take responsibility to ensure equal access. These two events bring intellectual disability more solidly into the broader disability rights movement. It is no longer about special children or providing normalizing training in the least restrictive environment but really treating all people including people with intellectual disabilities as full citizens and offering the supports they need for their full participation. Despite the potential of ADA and other civil rights legislation though, it has not had the impact that many had hoped. For the remainder of the talk, I will focus on my second point that despite the dominance of civil rights legislation and the ADA, the exercise of rights continues to be undermined by our social structures. I'm going to run through some of the ways that this happens in kind of general points and then I will use some court cases to show how it happens. I have already mentioned that many of the civil rights laws have embedded within them these ideas of normalization and the least restrictive environment. Although these ideas are supposed to ensure people to greatest liberty possible, it's often been used to justify segregation and restriction. Second, I want to point out that there is a fundamental tension inherent in liberalism in juxtaposing the ideas of equal rights and group specific rights. The claim to equal rights is used to disqualify one from group specific rights and vise versa—the claim to group specific rights are often used to dismiss equal rights.

Third people manipulate both the understandings of intellectual disability and the understanding of the key ideas of liberalism, autonomy and rationality, to include, exclude, create flexibility. These ideas are far from set in stone and different interpretations, as you've already seen, lead to very different conclusions about access to rights. In particular the relationship between intellectual disability and autonomy remains unclear. Among activists and in the courts sometimes claims are made that this population are/can be autonomous and competent. Sometimes it's claimed that they're not. Sometimes it's claimed that it is flexible and contextual. Again these claims are often made because people are trying to use interpretation to meet particular ends not because there is one right answer. It is all of those things. Sometimes people are not competent in certain settings. Sometimes they are. It is largely fluid and contextual.

I'm not sure how many of these I will go through. I will at least start at the beginning and then gauge my time. I have mentioned treatment a couple of times and that like education treatment is typically offered in supervised settings. It provides recipients with little autonomy. So folks to get the right to treatment don't necessary need to prove they are rational and autonomous citizens. However, unlike education, treatment is not a well established right in America. The Supreme Court has heard several cases regarding treatment I'm going to talk about the Olmstead case here. The case centers on two women who were institutionalized and received treatment. Their medical team decided that they had benefited sufficiently and they could now receive services in the community, but there weren't services in the community. So they remained institutionalized. Months past, years past and they sued. The Supreme Court decided that if a medical team determined that had one could benefit from community services and no longer needed institutionalization, then continued institutionalization was unjustified and because it imposed undue restrictions of liberty and civil right it was a form of discrimination prohibited by the ADA. Moreover the Olmstead decision required states to develop plans towards the deinstitutionalization including the development of community services. So this sounds like a great victory and it is in many ways. But we need to unpack this a little bit. The phrase "unjustified institutionalization" leaves ample room to assume that there is still justified institutionalization on the basis of mental retardation and that it is not discrimination. All of these court cases still use the term mental retardation. So when I'm talking about their decision, again, I'm going to use that term—when I'm talking about my own interpretation I will flip back to intellectual disability because that's the preferred term today. In fact the Supreme Court sites the Voice of the Retarded to say that for those with severe disabilities or other concerns, institutionalization may constitute the best form of treatment. The Supreme Court also still leaves medical professionals as the gait keepers to liberty unlike other Americans who can only be denied liberty when they commit a serious crime or present a threat to themselves or others, those with intellectual disabilities can still be denied liberty based on medical opinion.

Furthermore the reach of this supreme court decision is actually narrow and fails to guarantee a right to treatment to all people with intellectual disabilities to treatment or services in the community. The Supreme Court found that those in institutions who could benefit from community services had a right to them. However, those already living in the community, have no clearly established right to services because they live in the community they do not face unnecessary isolation or the deprivation of rights through institutionalization, so no discrimination, according to the supreme court, is occurring. To try to research that those in the community have the right to treatment, advocates must then argue that they are at risk of institutionalization or restrictive setting because of their needs. But again, no discrimination actually occurs until they are placed in those settings. So as long as they are left in the community and simply denied services, this isn't discrimination according to supreme court. And indeed we see thousands of people in Pennsylvania on long wait lists for services with little hope of receiving them until further court action or some other interpretation comes up.

In the case of Olmstead we see the court's hesitancy to actually offer group specific right to a large group of people, and instead they offer only a narrowly defined right to a small group of people, diminishing the impact of this decision for the many people with intellectual disabilities. Let me turn to the area of employment in the Little vs. Walmart case. This is an interesting one and it really follows a broader pattern of court cases revolving around the ADA. In the case Little v Wal-Mart, the court considered the application of ADA rights to accommodations in employment and hiring for a man diagnosed with mental retardation. In this case, a young man applies for a job as a cart pusher at Wal-Mart and when they go to set up the interview, he requested that his job coach be allowed to attend the interview, so that the job coach can help him understand the questions and answer appropriately. At first Wal-Mart says okay and then when the actual interview comes, they say no. He interviews and he doesn't get the job. And they say this is because he doesn't come across as enthusiastic or knowledgeable enough.

Littleton sues, arguing that the ADA was supposed to guarantee him accommodation both in employment and in hiring practices and that they denied him a reasonable accommodation when they said that his job coach could not accompany him. Interestingly, and in line with many other cases regarding the ADA, the court found that Littleton was not sufficiently disabled to warrant ADA protections. Littleton was diagnosed with metal retardation as a child, received a special education degree from high school, received disability income benefits and received a variety of community services based on the diagnosis of metal retardation including job coaching. However, the courts said because he could read, he had a girlfriend, he could drive and he argued that his disability was not a major limitation, that he did not qualify for the protections under the ADA. On the one hand, somehow this could be seen as a little victory because the court is actually recognizing that people diagnosed with mental retardation or intellectual disabilities have skills, that they can prosper and that they can be like other citizens. And so, the court actually uses a pretty progressive understanding of intellectual disability to deny him a right to an accommodation. The accommodation might have increased his likelihood of obtaining integrated, paid employment. So, because he was seen as equal to other citizens, he is considered ineligible for rights under the ADA. In the appeal, Littleton's lawyer is forced to undermine this progressive view and highlight Littleton's limitations and deficiencies in order to access what the courts have increasingly defined as a special or group specific right. Here again we see the narrow reach the court is offering for group specific rights as it becomes almost impossible to qualify for rights around the ADA and there has been the passage of new legislation to try to fix this and we've haven't quite seen if that will work or not.

But basically, many folks with mental retardation are considered not equally qualified or if they are equally qualified, then they are not disabled enough to qualify for ADA protections. And we see how the portrayal of disability ties into this. Because Littleton is presented as similar to other citizens, he deserves equal but not group specific rights, not until he provides evidence of substantial limitation can he access group specific rights.

Claiborn v Claiborn is a case that involves housing. Here the supreme court uses a very different portrayal of mental retardation and just as to note, Claiborn v Claiborn actually occurs before the ADA. There are many issues in this court case. The one that I want to highlight is that the advocates for people with intellectual disabilities wanted to establish them as what's called a quasi- suspect class. Which actually sounds like a bad thing but it is not. Other groups that have experienced a long history of discrimination, like African Americans and women are established as a suspect class and what that means is that any law that distinguishes between, say, men and women get subject to review. That the law has to be reasonable and just and not impose discrimination. So, folks representing people with intellectual disabilities said people with intellectual disabilities had similarly experienced a long history of discrimination and that there were these laws on the books, like one that they were dealing with in this court case, where there was a requirement to establish a group home they needed to get a special permit for a hospital for the feebleminded. Needless-to-say, when they applied for the permit for a hospital for the feebleminded, they were denied. Other group housing like an apartment building would not need to do this. This was an attempt to try to create equal protection guarantees. The court denied them the status. They reasoned that people with mental retardation were significantly different than typical citizens and therefore different laws were expected. So, whereas in the Littleton case, the court portrays people with intellectual disabilities as essentially similar to other citizens and denies them a group specific right, here the court portrays them as essentially different and to deny them equal protection. So we can see little bit of a pattern or lack of pattern here. All different portrayals are being used for different political purposes and the fit with liberalism and rights shifts. I was thinking of also talking about the death penalty cases, but I'm going to skip ahead to talk about the other limitations and I rights and then conclude so that there's time for questions.

As I have shown the courts have supported some rights for some people and offered relatively narrow decisions often assuming that equal rights and group specific rights are in conflict. So in the courts, there has been an undermining of rights, but the real world, the world outside of the courtroom, also serves to undermine the practice of rights. Many systems are still designed in ways that discourage the exercise of rights. For example, group homes regularly deny people the right to privacy and embedded within that, the right to sexual relationships. People with intellectual disabilities still frequently go from one supervised setting to another where they have little choice or power. Indeed much of what we have fought for, in terms of rights, are actually accessed to structured supervised settings like education, jobs and habilitation services that provide supervision and restriction more so, perhaps than choice and empowerment.

We have focused more on securing the rights that provide supervision than we have in fighting for rights that provide greater autonomy. We still haven't seen nearly as strong an emphasis on traditional civil rights so discrimination is still relatively rampant in terms of the right to vote, right to marry, to keep one's children. They are supposed to be guaranteed equal rights across this, but yet there are still this old Eugentic restrictions that sit on the books, there's still these old restrictions from the 1800s and 1700s that is disqualify folks labeled as idiots from these rights. I mentioned also that in early America rights were highly variable and dependent one's immediate social relationships. They still are. Regardless of the laws people live in families, in neighborhoods, in social service settings, that shape access to rights. So on the one hand, we have come far in creating awareness in improving the lives of people with disabilities in our society. On the other hand, though, a lot of the trends in larger society are not conducive to a more accepting viewpoint. Our world is increasingly fast paced, obsessed with particular ideals of appearance, quick to assume that intelligence is key to a meaningful life and people with disabilities still face tremendous devaluation, even in their own family, as well as their broader community. If people don't recognize others as rights bearers, it becomes very difficult to see yourself that way and to claim and then exercise those rights. Broader than one's immediate relationships, communities more broadly, fail to offer real support. What we call self—determination is bigger than an individual making a decision. There has to be social structural support. There have to be real choices to be made. To have choices means that there must be jobs available, there must be accessible transportation, affordable housing, a pool of qualified personal assistants. Communities must make available to people with disabilities the services and programs available to other citizens. Currently there are often so few viable options, the whole idea of rights can become somewhat meaningless. Final thoughts...

In conclusion, when we try to situate people with intellectual disabilities within the discourse of rights, there's this constant tension between what have become framed as dichotomies. Are they autonomous or not? Are they rational or not? Are they like other citizens or not? Do they deserve equal rights or group specific rights? Ultimately these are false dichotomies because they assume some typical, rational, autonomous citizen, who is this person? When I exercise my right to vote, I rely on the voting booth and I relay on there being trained personnel and I rely on there being instructions to do so. I rely on there being people trained to tally and process my vote. It is not autonomous action. I rely on a range of supports. Nor are people clearly rational decision makers. Think of the many times when you've made financial or health decisions with less competence in that area than you would have liked. People with intellectual disabilities are often like other citizens, because all citizens vary in their rationality. All citizens require supports and infrastructure to exercise rights. All citizens are affected in their ability to exercise their rights by the relationships and social structure in which they find themselves. The exercise of rights is always embedded in ones relationships and social structure so those who are systemically disadvantaged will have greater difficulty being recognized as a rights bearer and claiming one's rights and having the necessary resources and supports to actually use one's rights effectively to make choices and live a self-determined life.

So, at the end of the day, the story of intellectual disability and rights is not really a unique one. We as a nation have failed in general to support the human rights of our population. For decades we have been fighting for the group specific right to treatment, for decades we've been fighting universal health coverage and for decades we've been fighting for appropriate education for children with disabilities and for decades we've been fighting for appropriate education for other disadvantaged children like poor children and children who don't speak English as their primary language. I'm not going to talk much about solutions here but I will say that I believe we need to recognize the universality of difference among citizens. Human rights as opposed to Liberalism, does not require autonomy or rationality. Where as Liberalism divides, human rights starts with the notion that everyone has the right to be a respected member of the community and then seeks to develop supports to enable their participation. It starts with the premise of inclusion and it also leads to a dialogue with many groups, that simultaneously experience disadvantage. But I recognize this is no quick fix. Parents tried this back in the 40s. There is little support and we see right now there is little support for human rights if this country. While I have ideas for future directions, I don't think there is a quick or easy fix. The rhetoric of rights are resource manipulated by many populations used to serve their perceived interests. They can be used to include or exclude, to unify or to divide, to place people under supervision or to grant them greater autonomy and as long as we divided as a nation, as long as people with disabilities experience broader social marginalization rights will be an important tool in striving for equality, and improving the status of people with disabilities, but they cannot guarantee equality or respect until the broader social and relational context also supports these goals. Thank you.



Thank you so much Alison for illuminating. A hundred years of history in 60 minutes. It's pretty good. Let me start with three housekeeping things first. On your seats you will find these surveys. We would appreciate it if everybody would fill them out. They are important for us in order in terms of justifying to our funders why these lecture series are so important and what you learn as a result of your attendance. The second thing is the Temple University Press is set up in the back just to my left of the room and they have copies of Alison's book. If you are interested in buying one, now would be a good time to get one because she might signing your copy. Last, in case someone has to leave, October 21 is the next lecture in the series. It is by Tobin Siebers who is a professor from the University of Michigan and will be coming to read from his new book on the asthetics of disqualification. I highly recommend it.

Now, let me cut to some comments and questions from the audience. You have been sitting and listening patiently. Let me start off with a quick question. It has to do with a question about language. I have done a series of lectures for second year residents in medical school and one of the things I start with, is I ask them if they know what the medical classifications for cognitive disability were at the turn of the twentieth century. Well, no one ever knows because medicine doesn't study its own history. I say, well idiot, imbecile, moron, subnormal. Those are not terms that are surprising to anybody, actually, they are all incredibly conversant, but they didn't know they are scientific terms. One of the things that I have always tried to puzzle through is whether or not the terms were historically situated as empirical once and then fell into public use and came up with slanderous meanings or whether or not there are ways we can understand if the slanderous terms were already imbedded in terms themselves.


I think both. I think we are trying to continuously come up with terms that are going to describe a population that is stigmatized and so, embedded within those terms are often stigma. Idiot was used both conversantly back in the colonial era to describe people who—the way we might use it today, in a mean way, in a derogatory way. As it comes into medical use, they are trying to constrain it. They are trying to use it in the scientific and objective manner, but because now it is more formally attached to a particular population, whose stigmatized the level at which it gets used in a derogatory manner increases. We certainly see this with retardation. When parents really push for the idea of retardation, they are trying to rid of these old terms, like idiot, imbecile, they are seeing retardation as a pretty neutral term. It's got the connotation of slow or not progressing as quickly or even moving backward. At that point, at least, they thought it was going to be more neutral. It's not neutral because of the basis of what it is describing and the stigma inherent in it and quickly we see it then evolve into the playground insults. I think it is a little bit of both.


Thank you. If I was there at the time when the NARC decided to change its name to ARC, I would have pointed out that the problem is in the second half of the term, not the first. The "national" did nothing. I would like to turn it over to the audience for questions and we have one technical problem our hand held mikes did not show up. So if people would annunciate their question and maybe Alison would translate and summarize so everyone gets to hear them.



Given that the UN convention of the rights of persons with disabilities was based on human rights and not civil rights paradigm and given that our current President has signed on to ratify so that it will become law in the United States, do you see this in any way as advancing the rights of the citizens, which is a legal term, of people with intellectual disabilities?


I certainly think that any acknowledgment of the value of human rights is moving us in the right direction. I think it remains to be seen, though... does his signature really bring that into law? It is not being passed by Congress. When push comes to shove and folks fight for that right, we pass laws like the ADA and seen it crumble through the courts because the ideas passed weren't accepted by the powers that be, or when we try to translate them...

The courts are looking at legal precedent. The courts are looking for laws on the books. And they are using these discourses that are so laden and so divisive that even something like the ADA gets cut apart, Olmstead starts not being as effective and so Pennsylvania has a new lawsuit to try to get people deinstitutionalized. I tend to be pessimistic. I don't think we are going to see a major leap forward because he signed it, but I do think it is important that he signed it.


First off, thank you for a wonderful. I think it makes a great contribution to write a cultural history of disability. I sort... I really like your point by way of just not abstracting discourse of the rights from concrete goals or ends. Who do you see as your own scholarly conversation partners or influences?

I heard a lot of conversation with Martha Neusbaum in the background talking about liberalism. Who do you see as your conversation partners?


I didn't...because I wanted to go through so much history, I discarded a real literature review, so I apologize for that. One of the folks most influential in my writing, definitely, is Margaret Summers who is a sociologist, who does work on citizenship. I mentioned her briefly. She does work on the idea of rights as free-floating resources and these ideas that they grounded in different constituencies and they play out differently. I am drawing a lot of what I apply to intellectual disabilities from her theoretical analysis. Jim Trent, who did the most recent great history of people with intellectual disabilities...I see myself as in dialogue with that, trying to broaden out the history, that it's not just a history of institutionalization or Eugenics and really kind of bringing it up to a more contemporary time. Also, David and I mentioned briefly showing the historical trajectory how it has jumped from eugenics to now, but there are a whole middle time period where there are interesting things going on, people are trying to make progress and it is often being curtailed. And so I think there is a lot going on there. Neusbaum, is certainly in terms of...I actually read her as I was writing my conclusion. I had been familiar with her work, but I read Frontiers of Justice and I do think that was very influential in the way I thought about my conclusion so thank you Martha for writing that, because otherwise, God knows what I would have done to conclude it.

Those are are probably some of the — and Martha Minow, who I do mention, who I love this idea of the dual track legal system where folks who are competent and rational, or at least perceived that way, get access to civil rights and folks who are considered incompetent and dependent don't. I really start off trying to make that much more ambiguous. It's an interesting idea but really, we are all over the page and we need a more sophisticated way to think about this than simply inclusion and exclusion.


I guess I'm wondering why they put so much medical in the cognitive of — I think more about — inaudible.


Let me just summarize that. Why has there been so much medicalization when, as opposed to other more physical disabilities or they things that are more clearly rooted in the body, mental retardation isn't necessarily as well served by a traditional medical model. So why have so much that right?


You got it.


In the late 1800s and early 1900s, the medical field is establishing itself, so we have the establishment of the American Medical Association somewhere around 1850. They are creating their schools, their licensure... this is all really building up. And, at that point, first of all I don't think that they saw as much of a distinction between what they could - it's a point where they are before major immunizations and it's before they understand what causes cancer. It's before...they can't solve a lot of things, but they are moving forward anyway, with this is idea that it is physically grounded and they are going to discover...they might not know it yet, but through research and scientific empirical research they are going to discover the biological cause and they are gong to be able to cure it, fix it, and ameliorate it. In part, I think it is where they are in physical disability, which isn't very far, and also just I think it really clearly serves a political end. One of the groups that I didn't talk about were elites who hopped on the eugenics bandwagon and feminists who hopped on the Eugenics bandwagon who all saw a purpose that justified their goals by defining social problems as rooted in biology. So that the people who were poor, welfare wasn't going to help them or job programs weren't going to help them because they were simply biologically inferior. And if they're biologically inferior, we don't need to help them, we need to stop the spread of them. It's really the strong justification of the social stratification structure that received a lot of support from middle class professionals, middle class women and elites, who said well this makes sense to me, I'm biologically superior and all those people who are causing problems, especially the people I don't want my tax money going to... tax money isn't going to help them anyway. They're just a problem. I still think we see it is not laden in the same exact terms, but the sentiment is out there. There are people who are superior who deserve access and participation, opportunity and there are people who don't. So this was just laying nice an elitist and you want to preserve the social structures, this is a nice over law of scientific objectivity and these professional gait keepers were going to identify it so, it provided a whole system of social control separate from criminal justice. These folks hadn't broken a law, but through medicalization they could be controlled anyway and it looked benevolent, it looked objective.


One of the things about the food chain, is as long as you are at the top of it, it's okay. Before we close, I didn't want to lose this because I think it is one of the most significant things in your book is that you made significant efforts to go cross culturally to compare different population's experience. There's a wonderful page in chapter three, page 75, where you talk about the fact that as African Americans continue to experience racial discrimination after the civil war, one of the fortunate benefits of racial discrimination was a lack of access to institutionalization because institutions were not racially integrated. There are wonderful moments in your nuanced argument of this history where you do these comparisons across gender, race, and I think that disability studies has really struggled to figure out how to manage that cross cultural comparison because the history of medical racism is so diabolical and one of the pushes in civil rights movements was to separate one's self from an association with biological inferiority in order to point out a socially inferior class that was created and artificially imposed. I think your book does quite a nice job of trying to make those distinctions and yet at the same time recognizing that there are people of color with disability and they were effected by these systems in ways that often unaccounted for.

Thank you very much for that. I really appreciate your coming down and sharing your thoughts with us and for giving us your lecture.


Institute on Disabilities at Temple University
University Center for Excellence in Developmental Disabilities Education, Research and Service