Technology for Independence: A Community-Based Resource Center (CBRC) July 14, 2003. Presenters: Dr. Peter Blanck, Dr. Carol Gill, and Dr. Helen Schartz. MS. RITCHIE: Hello, everyone. My name is Heather Ritchie and I'm with the Technology for Independence, a community -based resource center, located at the University of Iowa's Law Health Policy and Disability Center. Welcome to the second Web cast in our series of Web casts on disability research in assistive technology. We have an excellent panel of presenters for you today to discuss theoretical orientations to disability research and research methods. But before introducing the speakers, I would like to make a few brief remarks about the Community-Based Resource Center or CBRC. We are one of four projects funded by the National Institute on Disability and Rehabilitation Research on technology for the independence of persons with disabilities. We invite you to learn more about these projects and their findings, information and links to these projects can be accessed on the home website of the Community-Based Resource Center. One of the purposes of the technology for independence projects is to seek a greater understanding of participatory approaches in research examining assistive technology and environmental access. Thus a primary aspect of the technology for independence projects is to bring people with disabilities and consumer-run disability organizations into the research process as well as the creation of research that results in action by the community that benefits the community. This approach to research utilized by the technology for independence projects is called Participatory Action Research or PAR and this was the topic of our first Web cast that was done two months ago. This Web cast on PAR is archived and can be heard by going to the home page of the CBRC and clicking on past Web casts and archives. The inclusion of persons with disabilities as co-researchers creating a bridge between activists and academics is an exciting endeavor and we wish to thank NIDRR, National Institute for Disability and Rehabilitation Research, for this opportunity to gain a greater understanding of this type of research that promotes the self-determination of persons with disabilities. So now let me introduce the members of our panel this afternoon who'll be discussing theoretical orientation or models of disabilities and how this impacts research as well as providing an introduction to research concepts and terms. Our first speaker today is Dr. Carol Gill. Dr. Gill is a clinical and research psychologist specializing in health and disability. She is an associate professor in the department of disability and human development at the University of Illinois at Chicago. She also directs the department's Chicago Center for Disability Research conducting research training and community service projects in the social sciences with an emphasis on a disability studies approach and substantive direction by persons with disabilities at all levels. She is a very well known disability scholar, serving as the executive officer of the society for disability studies. And her conceptual and research articles have been widely published in both professional journals and in the popular disability press. Welcome, Carol to the Web cast. DR. GILL: Thank you very much. Thank you, Heather, and thank you Peter Blanck and everyone else at the Technology for Independence Project for inviting me and having a forum that is so accessible. I'm going to be talking today about different models or series of disabilities and how they influence disability research. Some of you might be interested in the ideas that you can draw a parallel between theories and assistive devices. Theoretical models are actually explanatory devices. They summarize complex matters and they facilitate our understanding of how things work. Now, it's important also to note that theories are not something that's written in stone. They're not perfect. They're not divinely conceived. Any device or like any device the theoretical models value depends on whether or not… if it helps us understand. Another way of looking at this is it has value if it clarifies our grasp of phenomena, if it generates interesting research questions, if it leads to accurate predictions, but when it fails to perform in these ways, it won't be replaced by better models. That's just the life of theory. Theories actually can have a lot of power. They have clout. The devices we adopt to order our knowledge of the world significantly influence our views of the world and our actions in other words. And that has tremendous implications for what we do. …. Our theoretical models determine how we design our research investigation, including what research questions we ask. They help us define who the experts are and what roles they will play in the research, and in some cases, models disturb the status quo. They help reorganize long-standing procedures and power hierarchy. For example, critical theories are theories that have challenged the authority of the dominant culture and that kind of theory leads us to look at socially marginalized groups as experts regarding their own experience. Such theories lead us to ask research questions about life at the margins of society, including questions about social oppression and discrimination and what causes social oppression. So it's not surprising that a topic as complex and as incredibly human as disability has inspired a number of competing theoretical models. Maybe the simplest model and certainly the oldest, historically speaking, is one that many of us in disability studies call the moral model of disability. That's the moral model. In this model, disability is explained in terms of the super natural or as an act of God in response to sins or virtue. Some people still believe that disability is a punishment for wrong doing on the part of the affected individual or the family. Many people with disabilities that I talk to tell me that they still encounter people even if they're out on the street who will come up to them and say, oh, your family must have done something terrible to have had this happen to you. So this moral model, even though it's very old, is not going away. In a slightly more benign version of the moral model, disability is seen as a special hardship that God gives to special people so that they can overcome and inspire others to be what -- more special or at least to be better people. Well, unfortunately the moral model is quite limited in helping us understand and explain this disability. Consequently, in the modern age of science, disability was brought down to earth and explained through medical theories of disease, trauma, normality and efficiency. We refer to this more scientific model as the medical model of disabilities. Using medical ideas to organize our knowledge of disability carries important implications. When disability is understood in terms of physical and cognitive abnormalities, the problems of disability are located in the individual who is different. The disability site then is seen in that individual. And because the goal of medicine is to replace disease and dysfunction with health and normality, that differentness is viewed as something wrong that should be made right. The agent -- the person who rights the wrong is usually the professional expert who studies and fixes abnormality. The individual with the difference is left in the rather passive role of being the object of study or the recipient of treatment. In other words, the patient's role. As health professionals have grown more progressive and client centered. The medical model of disability has itself under gone significant rehabilitation. In a progressive what I will call the rehabilitation model of disability, and what Mereum in her article on models of disability refers to as the functional approach. The individual's own goals and values are factored into the therapeutic plan. Interpersonal and environmental variables are assessed as barriers and facilitators of the individual functioning and here we see what we use and call the environmental approach, looking at the immediate environment and looking at how it supports or thwarts individual functioning. This rehabilitation model of disabilities is more reformed medical model, allows for a more humanistic orientation for the individual in the context of the environment. However, notice that it still locates the primary problems of disability in our bodies and minds, and I say our, because I'm identifying very much as a person with a disability myself, and so when I talk about our, I'm referring to the broader community of people with disabilities that I belong to. Now, let's talk about the social model of disabilities. This model has emerged in the last 25 years or so, and it has come from both the disability rights movement and the new field that we call disability studies. I'm using the term social model now to stand for a variety of closely related theories that have many names. And you may encounter these in your readings. Sometimes it's called the minority group model of disability, some people refer to the independent living model of disability, but all of these models have something in common. They define disability as a social status rather than in terms of a physical or cognitive characteristic. According to the social model analysis, the status of people designated disabled is categorized by pervasive social disadvantage. So the emphasis here is on social problems. Contrary to public assessments disabled people disadvantages -- such as unemployment and social isolation are not inevitable out comes of their differences, rather, according to this model; these problems are caused by society's unwillingness to accept human difference and by the discriminatory practices resulting from that rejection of difference. Now, if you think about it, the medical model of disability out of the realm of the super natural and brought it down to earth, while the social model took disability out of the individual and placed it in society's court. This model says that it is society that should be fixed to ameliorate disability, not people. According to this model, there are potentially many solutions to disability problems, and since they are primarily social problems, they can be addressed by any agent who prods society to respond more fairly to people who function differently, and these agents can include attorneys, policymakers, independent living advocates, any person with a disability, and the allies that we have welcomed into our lives. I'm going to stop there for a second and make sure that everyone can hear me. Is this coming through? MS. RITCHIE: I think you're coming through fine, Carol. Go ahead. DR. GILL: Now it's unmistakable that the social model is a model with power. It represents a tremendous -- almost a revolutionary shift in understanding human difference in away that is quite sweeping in its power to transform what we think and do. Disabled persons report that social model thinking radically transforms their lives. We hear that word transformation a lot when we look at social framework for understanding disability. In research studies and an autobiographical account, people with disabilities describe the emancipatory impact of the social model because, first, it matches their real experience better than the other models before us; second, it validates them as whole people rather than deficient people. Next, it redefines their problems as issues of injustice rather than personal tragedy, and last, but not least, it acknowledges their power to train and address their own issues. And on top of this, social explanations of disability offer disabled individuals the basis for a minority group for community identity, including a sense of pride, a cultural movement, and a foundation for collective action to change their shared social status. The article that I recommended by Paul Longmore talks a bit about all of those possibilities that have been opened up by social understandings of disability. I'm going to give you one of my favorite quotes about the social model of disability. This is from British disabled writer and activist Liz Grow who says, "My life has two phases, before the social model of disability, and after it. Discovering this way of thinking about my experiences was the proverbial raft in a stormy sea. This was the explanation I had sought for years. Suddenly what I had always known deep down was confirmed. It wasn't my body that was responsible for all my difficulties; it was external factors, the barriers constructed by society in which I live. I was being disabled -- my capabilities and opportunities were being restricted by prejudice, discrimination, inaccessible environment and inadequate support" and she finishes with this word -- revolutionary. Well, the social model of disability has also transformed disability research and the way we do it. It expands the research lens allowing us to investigate topics that the medical model was really not able to handle, such as housing discrimination, unemployment, poverty, disability precedents, issues of institutionalization, and deinstitutionalization, and other policy questions, those are just examples. Certainly not an exhaustive list. We can also use the social model to explore the history of disability and to examine the cultural complexity of disability. For example, here is a research question: Why was a foot that was deformed from years of foot binding considered feminine and beautiful in ancient China, but a foot shaped similarly by genetic disability was considered horribly defective in 20th century America? These are difficult questions the simple models of disability cannot explain unless they take into consideration all the complexities at all the levels that disability sets in our lives -- cultural, social, economic, political and medical. Moving the source of disability problems from the individual alone out to the environment/individual interface, simulates clearer, more relevant more grounded research questions. For example, one research study that I read a few years ago was very much guided by the medical model and it investigated self-esteem in disabled children. The researchers discovered a decline in self-esteem during the middle years of elementary school. Coming from the medical model, they hypothesized that when disabled children get old enough to compare their functional ability to that of their nondisabled classmates, they become fully aware of their deficiencies for the first time. And that this leads them to think less of themselves. It leads them to be depressed about their bodies, and this results in decreased self-esteem. So, unfortunately, framing the problem as a crisis of adjustment to one's medical misfortune distracted the investigators from considering critical social factors that could have triggered self-esteem decline. They ignored the fact that during the same time the children had a drop in self- esteem, they were also reporting episodes of verbal and physical abuse from classmates. In addition to that, during the same period of time, the children's parents began to express their own disappointment in their children's ability to function as well as other children; in other words, it was parents who were making that comparison between their kids and nondisabled kids. And so the disabled children had definitely had decline in self- esteem, but the question that I'm left with is, were the disabled kids feeling depressed by the disability or by the message that they were getting from the classmates and parents that they didn't measure up? Now, if the researchers had focused on the individual and social concept instead of narrowing their investigation to the individual dynamics, they might have produced a better study, and in addition, they could have called attention to the physical and emotional battering that the children were experiencing each day of their lives in school. Disabled people's critique of the medical model has also challenged traditional research approaches. And what has eventuated them is that disabled people have been stepping out of the role of the passive objects of study. They're seeking inclusion in research as expert informants and the projects that we're all involved in here coming out of Iowa I think is very illustrative of that approach. Disabled people's experience as insiders to disability and their expertise as advocates has already contributed significantly to research design and application. As access to professional training and academic positions improve, many are becoming directors of research projects, others are building partnerships with experienced researchers, and some very exciting disability projects qualify as Participatory Action Research, which Heather mentioned, and this kind of research is marked by the central place of the disability voice, by the minimization of power and equity between the researcher and the research and also the goal of improving social conditions for disabled people. I want to put out there for discussion today what I would say is a take-home message, some research guidelines that come out of the social model of disability. First of all, I think one of the guidelines is that we need to treat disability as a complex phenomenon, not just a physical or psychological or cognitive characteristic, but something very complex and interactive. Second, we need to be comprehensive in considering all the possible interpretations of our research findings. We need to weigh the importance of social, cultural, economic, and policy factors. We also need to look beyond the individual to understand disability phenomena. We need to ask questions like is it impairment that causes low self-esteem or is it internalized social devaluation, that kind of thing? Next I think we need to highlight the perspective and voices of people with disabilities, go to the source of important data and that's going to the lives of people with disabilities. Next I think we must never assume that the disability experience is negative. That's the way disability was cast traditionally in medically driven research, that the disability experience must be negative and should be fixed. We can no longer assume that. We know that disabled people lead whole lives and that is not necessarily a negative experience. Also we should not assume that disabled people want to be nondisabled or that they need to be helped to be more nondisabled. We should think about access and we should think about access broadly and deeply. If your research procedures are not accessible in terms of environmental, programmatic, communication or economic inclusion, then you could be excluding diverse representation. Another guideline would be to use caution in selecting measures that are standardized on nondisabled samples. When we use standardized tests, when we use a lot of psychological measures that have been used in research traditionally, most of them have been standardized on nondisabled samples and we should use care in bringing them over, transferring them over into our research. Next, be aware of the affect of the investigator. Some persons with disabilities may react in terms of their bad past history with professionals because of negative experiences at the hands of professional sometimes researchers and we should take that into consideration and be aware of that and address it sensitively. We should also recruit participants for our projects very creatively and exhaustively. Really go out there, go to where disabled people are, where they congregate voluntarily and where they congregate simply because they may need services or information or whatever, but you need to go where the people are that we're interested in hearing from. And maybe the last guideline, for now, that I'll put out here is that projects need to be meaningfully guided by people who are disabled and by nondisabled researchers who form partnerships with disabled people. The direction of disability research by disabled people is important in at least two ways: And I'll just put these out there if people want to discuss them further, we can. I think the two ways that's important is systematically that people with disabilities have certain kinds of knowledge that comes from experience that is important to harness and research and also politically. Disabled people have been disempowered historically in the research process and that needs to be addressed through more equal and just distribution of power in research. Let me leave you with a question: Where do we go from here in terms of theory? Well, like other models before us, the social model has received its share of criticism and suggestions for replacement. For example, disabled people who also belong to other minority communities defined by race, ethnicity, age, gender or sexual identity have pointed out that the social model is the one class that includes framework that reflects the real diversity of the disability experience. Issues of representation and inclusion have also been raised by those who feel the model does not adequately reflect the issues of person with learning, intellectual, psychological or non- physical disabilities in general. Some feminist disability scholars have claimed that the social model incorrectly dismisses the significance of functional limitation. They've called for more attention to the experience of the body in disability theory. As historian Paul Longmore points out in his brilliant article, the second phase, people with disabilities are no longer just interested in focusing on social problems, they also wish to focus on themselves, and explore issues of personal and group identity. We want to understand and define who we are as disabled people. We want to document our experience and some of us want to examine and celebrate our strengths, our culture. We're entering a new phase of what I will call disability positive research. These future directions under score how important the social model has been in advancing knowledge about disabilities. Social model analysis has expanded our thinking not only about disability, but about humanity in general, with profound consequences for research. The potential for even greater impacts as the model is discussed, challenged, revised and ultimately replaced by something better. If we all stay involved, all of us on this Web cast, all of us in the disability community and beyond, we will all be involved in contributing to this powerful process as long as we really deeply care about disabilities. Thank you. MS. RITCHIE: Carol, thank you very much. That was an excellent talk to start our discussion today on thinking on different aspects of the disability models that are used in research. As we have in the past, we have the participants to the training on the teleconference with us here, and I'd like to open up the floor to them first to ask Carol questions and then we will go to those who have submitted questions over the Internet. So I'll open up the floor to the participants who are with us on the phones. Are there any questions for Carol at this time? Not at this time. MS. RITCHIE: Okay, Mark have we received any questions from our audience on the Internet? MARK: Oh, yeah. MS. RITCHIE: Go ahead then I'll let you move forward with those. MARK: Okay, the first is -- the subject says environmental or ecological. The problem might be one of the words themselves because the environment is usually looked outside of self. For our health perspective, the healthy within us is a function of ecologies, could you discuss the multiple ways of framing this question? DR. GILL: I'm sorry, I'm going to have to ask you to say it again a little louder. I'm having trouble hearing. MARK: Okay. The problem -- is this okay? The problem might be one of the words themselves because the environment is usually looked outside of self. For our health perspective, the healthy within us is a function of ecologies, could you discuss the multiple way of framing this question? DR. GILL: The question is primarily about health? Is that right. MARK: A perspective. DR. GILL: On health. MARK: Yeah, about how the environment -- how you look out -- how you perceive yourself. DR. GILL: Right. Well, I'm a psychologist by training, and I know that in terms of mental health, our sense of healthy equilibrium is very much affected by the messages we receive from our environment about our value as individuals, about our usefulness to others, our attractiveness, etc.. Also just our view of health in general is very much affected by how health is defined by others. Different cultures have different views of what it is to be healthy. And so we're affected very much by that immediate circle of important individuals in our environment and also by the very structure of the environment. Our culture also affects the way buildings are built, the way business is conducted, the kinds of relationships that are important. The kinds of social interactions that are important, and when all of those factors conspire to construct barriers in our path that exclude us if we function differently, that, say we don't belong, then we get a very negative message. Now, the immediate environment is very important and influential, but as was pointed out in an article, the current models of disability have been going beyond the immediate environment and looking at broader social systems and cultural systems, and the values that they find to be different. And so I think you need sort of those two different levels, you know, it's kind of arbitrary to devise them into the immediate environment and the broader environment because they certainly flow into each other, but I think that some of the more progressive rehabilitation models have focused mostly on that inner circle that immediate environment in what some people call the ecological approach to disability, that interaction between the individual and their immediate environment. Disability studies and social model thinking takes us to the outer circle, the broader social and cultural forces, and I think those are very important to factor in as well. There is no harsh dividing line though between the individual and the environment and I don't know if that's what the questioner is getting at. The truth is -- excuse me -- we internalize so much of what we learn from our environment that there is sort of an individual ecology as well. That what we say to ourselves, how we define ourselves gets its worth from the broader environment. That's why, again, I have to emphasize, it's so important to look at disability questions, research questions in full complexity at the individual level, the immediate environmental level, and the broader systems level or else we won't get the answers. MARK: Okay, thank you. MS. RITCHIE: Mark, do you have another question there from the Internet audience? MARK: Yeah, I have a couple -- one of them -- let me -- let me read it. It's not rhetorical, but it's still worth looking at. If the challenge is one of complexity, then how come you don't move the research towards that of complexity science? Law labels -- law labels but may not shape the evolving rules learned on the playground, but industries can manufacture and shape our built world around human existence. The brain itself was communicating the bias; the nature and advancement of psychology would not have understood that existence, the DSM keeps growing like a tree, which is within all of us. This itself might be a challenge for we are often scapegoats. The deformed were not sacrificed to God, it was the healthy live stock, but it was the cosmologist that has been doing some interesting work, don't you agree? DR. GILL: I can't disagree with any of that. I'm very impressed by the complexity of these questions and I certainly think that they reflect a lot of what I've been talking about today, that in order to understand something as complex as disability, we have to look at factors on a lot of different levels and I'm pleased to see the questions reflecting that level of diversity and complexity. MS. RITCHIE: Excellent. There aren't other questions that you have in front of you, Mark, then we'll move to the team here in Iowa. MARK: All right, that would be great. MS. RITCHIE: Okay, Carol. Thank you very much. And please feel free to jump in as we're discussing research concepts and terms here with a panel of presenters here at the University of Iowa. DR. GILL: Thank you. MS. RITCHIE: Sure. I'd like to introduce everybody that is sitting around the table with me. First I'd like to introduce Dr. Peter Blanck who is a law professor here at the University of Iowa as well as a professor of psychology and of public health. He is the director of the Law Health Policy and Disability Center and is the principal investigator of the community-based resource center. Along with Professor Blanck, Helen Schartz will be discussing research concepts today with us. Dr. Schartz is the director of research at the Law Health Policy and Disability Center where she oversees the center's research projects. She has both a Ph.D. in clinical psychology, and a J. D. Along with both Peter and Helen, we have two more researchers on the Web cast with us today. David Klein who is the director of technology at the Law Health Policy and Disability Center, as well as Michael Searcy, or Mike, who is a doctoral student here at the University of Iowa in the discipline of communication studies. Welcome all of you and at this point I will turn the discussion over to Professor Blanck. DR. BLANCK: Thank you, Heather. Carol, that was an amazingly interesting discussion, and I commend you for the work you've done and how you've pulled it together. I kind of like the format of dialoguing, so I thought we'd go around the room here, and they're all laughing thinking that I'm passing the buck to them, and get reactions to Carol what you had to say and then weave it into some our own experiences here. Then keep the questions coming in an interactive way and we'll take them as you get a certain group of questions piled up back there. So maybe we'll start with Dr. Schartz. Helen, she's smiling because she knows I put her on the spot first, but she's actually a really exquisite Ph.D. J.D. researcher here who we're very lucky to work with who not only directs the bulk of our research activities, but also works on -- which we haven't touched on -- the interplay between human subjects concerns, ethics, confidentiality, privacy that's wedded in all this we're talking about and which will be the subject of later Web casts. Dr. Schartz. DR. SCHARTZ: Carol, one of the things that hits me as I was listening to you talk about the various models with complexity issues and how difficult it is sometimes in research to grasp that complexity issue and as Peter has often said, it's usually not a research study that becomes important, but it's a combination of research studies and what we understand as we build upon what the field knows already with different inputs and different ideas and based on different theories to try and find out information and particularly that that information is useful to people, that it's practical. I was trained as an academic researcher where you do research for the sake of research, which is fine, but in the real world, people like the idea that, you know, research has a purpose, that it has a practical application, and that's where I think it becomes really important, especially in human research that we understand that and that researchers as well as everybody else involved in the process, remembers that it has a practical side to it and that these are all very complex issues and at times we can partition out little pieces of it to study, but that it's going to require us to really grasp it from the different perspectives, from different disciplines, from different ideas and experiences and that the more individuals we involve in that process, in planning and designing and carrying out the research the better off we are in trying to get a grasp on that complexity. DR. GILL: Right, and it's going to lead to increasingly complex theory as well as the theory reflects the perspectives of very diverse people. DR. BLANCK: Mike? DR. SEARCY: The thing that strikes me that we just listened to Carol discuss was the whole concept woven into all of these models was the whole concept of context, and being able to take research and not pull it completely out of its context because we live in an environment we live in a society and we live in a world that there are lots of interacting variables. I, too, was -- are one of those people that have studied research for the sake of research sake, and when we look at the disability models that -- and then the theories that we've just discussed, the whole concept that really becomes incredibly striking is the whole environmental issue that you can't dismiss the fact that we live in a real world. And by looking at various research aspects from passive participants to active participants I think for the most part that that does a world of difference in recognizing that not only are people human beings and recognizing their humanity, but then also recognizing that research can be done in the real world. DR. BLANCK: David Klein. DR. KLEIN: This is Dave Klein, and as a -- starting my career as a researcher, one of the things that strikes me about this discussion is the kind of training that goes into training researchers, professional researchers and how this kind of discussion really needs to go on in the class rooms, methods class rooms and with the mentors that are out there who are actually developing -- developing students and teaching people how to do research because these are the people that are doing a lot of research. These are the people who are getting professorships and who have to do lots more research just to get promotions and tenure and if they don't hear the message early on, then it's something that may get missed in a lot of different ways. So, you know, this kind of a discussion at a lot of different levels, not just with disability, but with diversity and the different models are really issues that need to be discussed very early in people's careers. DR. BLANCK: Thanks, David. Did you want to say some more? Before we open it up, I want to add one thing which has been said already, for me, a big part of this research building on what Carol and the others have said, the new emphasis on making explicit in research design often hidden assumptions and biases which too often have shaped the outcomes of traditional research in ways that have frankly not been beneficial to the lives and the views of persons with disabilities. And by that I do not mean to suggest research designed itself should be shaped so as to achieve a particular outcome, but I do mean to suggest -- for example, we've done a number of studies recently looking at the economics of the Americans with Disability Act and to what extent supposedly the ADA has been related to labor force rates and declines and improvements in the employment of persons with disabilities. We've been in these hot debates with these very distinguished economists trying to basically illustrate that there are basic assumptions in their models, which are not very flattering, frankly, to people with disabilities from an environmental or contextual point of view. Assumptions like building into an economic model that, for example, people with disabilities are always, quote, less productive, than people without disabilities and of course if you frame the question that way and the research model that way, you're going to achieve a different outcome. And in fact, when we frame the questions differently and re-analyze the same data, my colleague, Doug Crews who some of you may know and Lisa Shur and I have just done an article on this issue, we find the opposite results of what these economists find. So one of the major underlying lessons here is to celebrate bias, celebrate the assumptions we bring to the research, but let's make them explicit so that we can understand the context better as these other folks have suggested and Carol, maybe you want to pick up on that, agree, disagree or what is your perspective. DR. GILL: Can you hear me? DR. BLANCK: Yeah. DR. GILL: The underlying assumptions are really an important part of learning to do research. You need to look at not only what the theories say, but what the underlying assumptions are about the constructs including disability itself, what it means, and again, looking at the models, you can see how the different assumptions map onto the different theories. If the theory tells you that the problem is in the individual, then it's going to lead to a whole bunch of assumptions about how disabled people are different from -- inferior to or almost as good as some kind of norm. On the other hand, if you have a theory that says disability is not just in the individual but it's in that interface or that interaction between the person and the environment, you're going to have a whole other set of assumptions. And in this case, there is an assumption that the environment contributes to the limitations that disabled people experience. And that's an assumption, too. The assumptions need to be tested through our research to see if they're just empty, invalid assumptions or are they really helpful to our understanding? Do they really promote and advance our understanding in ways that are, again, useful. Do they lead to useful predictions? Do they lead to useful recommendations? DR. BLANCK: Carol, how do you define useful? DR. GILL: Well, I think that one of the neat things about current disability research and future directions is that useful is being defined by the people. We're going back and we're grounding even those kinds of constructs, and you're very right to ask that question, Peter, because usefulness is a construct, too. Construct meaning we have constructed it. It doesn't exist out there with the oceans and the rocks as something given to us by nature. We are constructing words like usefulness and the meaning all of the time. And usefulness increasingly in disability research means do disabled people think it's useful? Do disabled people, disability advocates, allies, family members, et cetera, find that these concepts lead to guidance for them in living their lives and improving their lives, good recommendations for clinical practice, for professionals helping professionals, and a number of us are engaged in research in partnership with people from independent living centers and other disability organizations and we're relying heavily on them to tell us what's useful in their work. I'm involved right now in a project on supporting people escaping from nursing homes and reestablishing themselves in the community. And we won't consider that work to be useful until it really helps improve the lives of the people who are getting back into the community and the independent living center advocates who are supporting that reentrance into the community. So to me, words like useful need to be grounded in the disability experience. DR. BLANCK: Carol, can I ask you, professor, I have another question for you and then we can take some E-mail, how do you distinguish usefulness and perspective of the disability community from advocacy in terms of research? DR. GILL: Is that a question about whether advocacy is a help or hindrance in research? DR. BLANCK: Or is disability advocacy embedded in the disability perspective just as different perspectives of advocacy are embedded in other perspectives. DR. GILL: Well here's what I think. Sometimes I've done research with community partners in the disability community and at times the results of our studies are welcomed with open arms by the community and they say, great, thanks, this is just the information we needed to make our case to policymakers or whatever. But sometimes we come up with findings that they didn't expect and don't like, and they say, now, wait a minute, this isn't going to be helpful to us. This doesn't help our advocacy. But we talk about that. We work through it, and so far I think we've all come to the conclusion that the very best advocacy is going to be built on the very best information, whether it's welcome information or not, information is power. And disabled people as a community, my brothers and sisters, I feel very strongly are entitled to -- they deserve the very most rigorous, best research and the best facts that we can give them even though some of it may be upsetting, distressing, or not what was expected, but that alternately having the best information we can provide is going to give us the best advocacy. And so I really do see rigor in research and sound information as real advocacy. I don't think we need to go into research saying, here, let's get this result because it will help our advocacy. I see it very much the other way around, that the best information will ultimately lead to the very best advocacy approaches that we can adopt. MS. RITCHIE: Great, Carol, that's an excellent point. Let me turn to Mark now to see if there are other questions that have come in over the Internet. MARK: Yeah, the first one is -- in my work with infant hearing screening, I have become aware that some ethnic groups do not participate in the follow-up of their children's hearing disabilities because of cultural and religious influences. How does the social model of disability interact with such influences? DR. GILL: Is that question for me? This is Carol. MS. RITCHIE: Yes, I believe so, Carol if you want to go ahead and then other folks here can jump in as well. DR. GILL: Wait a minute. I thought the Iowa people were going to be on the spot for a while. (Laughter) DR. GILL: I think this goes back to Peter's question of who defines what useful is. I think that we also must respect cultural differences, including cultural differences between the disability community and the more traditional dominant culture. We have to respect differences in how we interpret what's going to be useful, helpful, healthy, and even what hearing limitations or impairments are going to mean to us if I go into sort of a group in which deaf culture is dominant, and I mean Deaf culture with a capital D. And when I say that, I'm thinking about the fact that my organization, Society for Disability Studies, just had their annual meeting in Washington D.C. and we had a lot of participation by people from Gallaudet University where Deaf culture is dominant. In that culture, there may be a very different response to information about hearing impairment in a child than you would have in the dominant culture. So if in that culture, the Deaf culture, or other ethnic, racial or other cultural groups, if there is a different response to hearing -- testing for deafness or hearing, I think we can't be too quick to jump on that and say it wasn't the right response. How can we get them to have the right response? The right response is something that we humbly have to look at as partly defined by the group that we're working with. And it may be for certain groups the dominant response is not the right response. MS. RITCHIE: Is there another question or let me open it up to the participants who are on the phones. Are there any questions from individuals who are participating with us on the phone line? OPERATOR: Not right now. Sorry. MS. RITCHIE: That's okay. Mark, one more question? MARK: One more and Carol just hit on it a little bit just then. I studied program effectiveness within Washington state division of developmental disability -- what comments do you have regarding individual vs medical vs social models for persons working as applied researchers. DR. GILL: Can you repeat the first sentence. MARK: I studied program effectiveness within Washington state's division of developmental disabilities. DR. GILL: So the question is about how these different models - - what place they have in the world of developmental disabilities? MARK: Well, what comments do you have regarding individuals vs medical vs social models for persons working as researchers? DR. GILL: What? MARK: Working as applied researchers. DR. GILL: As applied researchers -- and I think you're right, that we have been hitting on this a bit in terms of applied research, so much of it traditionally has revolved around the questions of how do we make this person's life as normal or nondisabled as possible? How do we help this person be functioning as normally as possible? And that's where a lot of applied research has sort of put its dollars and its time. And I think increasingly even applied disciplines like rehabilitation are beginning to see that it's not only more cost effective, but much more human friendly to factor in the values and the goals of the affected people, people with disabilities and their families in determining what the goal should be of applying these research results. Beyond that, I'm not sure where we'll go, but the world of developmental disability is just such an important one right now for expanding some of the concepts and theories that have been developed in the world of physical and sensory disability, and we're seeing these theories are holding up for other people with other experiences and so far it looks like they have been helpful, and that they are pretty robust, but that work is still being done. What I tell my students all the time, and I teach in both a masters degree and a Ph.D. program, is that I tell them that they're pioneers, that we are pioneers because this approach to research is pretty young, and so we as faculty members are right in there, you know, shoulder to shoulder with our students of today and the next generation in seeing how these models and theories develop. But I think that one of the areas where social model theorizing has been introduced in a most exciting way is in clinical practice. I do a lot of training with medical students and I'm going to be expanding that into students from other applied disciplines. I also work at the university with many students in occupational therapy and physical therapy and talk about transformation. When they learn about alternatives to medical model thinking about disability, they get so excited and passionate, and they want to go back to their fellow professionals who are in practice and they want to spread the word and say, look at disability in a more complex way, and look how energized our work becomes and how client centered and really helpful it becomes. So I think that these newer models if anything, are energizing the applied discipline. DR. SCHARTZ: This is Helen Schartz and I'd like to actually -- thank you, Carol. I think you've given us some great ideas here and I hope you'll keep talking with us as we go through some of this stuff. I'd like to move us a little bit from the more theoretical discussion--from theories and models--to how we might actually conduct some research studies based on those theories and models. I think you made a great point before when you talked about advocacy and the need for the best information and to me that's all research is, is it's gathering information in some systematic, in some way that we're going to be able to tell somebody else about, but it is really just gathering information and it may be from my legal background, it may be that legal research where I gather information on cases and laws and people's experiences there, and from psychology perspective, it might be gathering individualized information on people about their experiences and their opinions, but any way I look at it it's simply about gathering information and finding a systematic way to do that. And finding the best information usually means that we have a systematic, that you have to have a way of going about it that other people can replicate, that other people can understand, that can lead you to information you think you can probably rely upon. And to that end, I think we need to hit upon some of the important terms or concepts in research. And I know for some of the people, either on the phones or following this on the Internet, some of these terms and concepts are going to be entirely new to you. Something you haven't been exposed to and I don't know if I'm going to be able to explain them so you can understand them, but the idea is to hit on them, give you some ideas and as you start to undertake some research and you start to do research, or as you continue in the research that you're doing, the terms become even more important or even in evaluating the research that other people are doing. So one of the things I want to start out with is the idea of where do you begin with research? I used to teach at a university and I always had thesis students come into my office, master's thesis students, and say that they didn't have the slightest idea what to do with their masters thesis and in my mind we're about half a dozen to a million questions that I thought had that potential and I now have a four year old who asks me questions every day and probably about 75 percent of the questions she asks me I think of as potential research questions. And it's really coming from your experiences of what it is to know, and turning that into then what it is that you need to find out in order to figure out what it is that you want to know. So if for example individuals are coming into a center for independent living saying that they're having trouble using automatic teller machines, then that's one of the things that you may want to know is, you know, how accessible are those automatic teller machines, how many of them are there in the city, and what types of difficulties are people having and what types of things would they like those automatic teller machines to be able to do and what are other options and opportunities. So starting with what would be a research question is usually formulated around what it is that is important to you. And what it is that you think you need to know and trying to figure out how you can figure out ways to find out that information. And as Carol talked about so eloquently a little while ago, you also have to bear in mind that however you formulate, however you term that research question, it may show some of your own biases towards that -- the research that you're doing, and that may impact the results that you find out in the conclusions that you make from it. Just about anything that you want to know can be formulated into a research question, and in another month, there will be a module about how to formulate research questions and a Web cast later on I think about self formulating your own research questions. One of the things that researchers often do is to look at what work has already been done on a topic, much as Carol described the history of the different models of studying disability, is also the idea that whatever your research topic is, you might want to do research on what others have done in academics we call that a literature review. In reality, people think of it as just finding out the history, finding out the networking, finding out what other people have studied, how they studied it, what they know about a topic already and that can help guide you in how it is you want to do your own research or what research is really necessary to do. It may be that there is already information out there and so a research study that you're thinking of may not even be necessary to do. From there, you probably want to start thinking about how you're going to design this research study, who it is that would be involved in the research study, what types of methods you would use, how you would gather information, and then how you would deal with ethical issues and constraints and other issues like reliability and validity terms that we're going to talk about hopefully still today. One of the first things that you might think about in terms of doing your research is who is it that you would like to involve in this research? From participatory action research perspective, you would hope that the community would be involved from the beginning, even from what are the research questions, what is it that that community wants to know, and that really takes us from the perspective of having individuals from a community, for example, individuals being there just as subjects of the research as opposed to those individuals being integrated into the entire research process. They are helping to identify what the issues are that they want to look at, all the way through what it is that you're going to find in the conclusions and how to use that information, and it really does then highlight their perspectives and their experiences and bring that into this whole research process. So that it's not doing research on individuals with disabilities, but it's doing research with those individuals. And so when you think about that, it always draws us back to that problem, that definitional problem of who to include in the research study, not just as researchers or co-research, but also who's going to participate as participants? Who is going to provide the information if it's going to be research on individuals, who is going to provide the information? And how you are you going to define those individuals? The disability community is a very diverse community, and how you define that is going to have great implications for how useful your research results are going to be. And so that's something you need to look at closely and what we call those -- so you have to think about what we call -- something called a population, which is the entire community, the entire group of individuals or people or society that you believe that your research results might be applicable to. And so if you're doing a study -- perhaps in the United States, that might be one restriction on your population of your study is that the results of your study may not be applicable to someone in another country. If you're doing a study on -- a study with individuals in a particular community, in a suburb of Iowa City, that may mean that your research results may not be applicable then to a larger group, to suburbs other places, or to other states. So you have all these constraints on what you consider to be your population, but your populations are all those individuals and societies that you think your research results will apply to, that you think they will be not just important to but what you find would be similar to what you find there. And once you identify what that population is, then you usually try to create a sample. A group of individuals who are actually going to participate in your research study, people that you're going to gather your information from that are going to represent that entire population. And that is a difficult step, if anything else, about research is difficult, trying to define your population and then trying to find a representative sample is very difficult as well because as Carol has talked about, individuals with disabilities come from very different perspectives and very different ideas and experiences and so you have to try and figure out what are the important characteristics in that population that need to be represented in that sample. And then how can you gather individuals with those characteristics in the proportion in your sample that they would be in the population. Some of these things are fairly straightforward when we think about characteristics like gender, you know, how many individuals are male and how many are female in our population and how many individuals are male and female within our sample. But when it comes to more diverse characteristics like the type of difficulties people have and their experiences that may become important, that becomes more difficult. MS. RITCHIE: Do you want to break at the moment and open it up for questions? Do we have participants on the phone that they've been very quiet in this Web cast, I might add, that have questions of Helen at this point? CALLER: Well, I have a question. One of the things that I've struggled is working with people who -- we're researching people with mobility limitations, but the participant may also have problems with cognitive issues, and we ask them, you know, these theoretical questions that researchers tend to ask, and they don't understand the question. How can we, as researchers, you know, take it a level down so people can understand us? DR. SCHARTZ: I think that's where the whole idea of Participatory Action Research becomes important in that you want individuals that are going to be in your population represented very early off in your research studies to help you as you pilot the information you're going to present to them, as you pilot the tasks you're going to ask them to do so that they can help you put those into terms or come up with ideas for the way that you want to do things. Peter is making hand signals at me and so I'll let him speak on that. DR. BLANCK: I'm making a triangle shape to Helen. We'll talk about triangulation involving research and involving persons with intellectual disabilities. For example talking with their providers, their guardians, their parents as well, so it's not as much as taking it down to use your word, not harping on that, but to making it relevant and useful to go to Carol's word, to putting it in a perspective that's relevant to their life experiences, while at the same time achieving the same research objective. Carol, I'm sure you would agree with that. DR. GILL: Yes, I definitely agree with that. I also think that the question is a good one to ask in any research with any sample, with any population, because we want our data gathering instruments to be as accessible as possible because there are, you know, people do have a variety of strengths and limitations in any research study, and you might not always be able to -- on the basis of how people look -- know how they're going to process information. Even people who are not labeled disabled may process information in different ways. So I know as a researcher I've become aware that I need to address that not just as a disability issue, but as a human variation issue and also as an issue of making my instruments as accessible as possible to everyone. So we should strive to use straightforward language as much as possible, to build in to, for example, our documents that explains the purpose of the research and ask permission of the participants to be in the research, the informed consent documents, we should explain things in a variety of ways, and take time to assess whether people are understanding exactly what they're getting into. These are good research principles of accessing communication that I think stand us in good stead with a variety of different populations. When you're working particularly with people who may have specific communication needs, then of course you know you want to -- I think the participatory angle is a good one. Work with those people very early in the research process. Get advisors in the community to review your materials and to see if they seem straightforward and accessible, that kind of thing I think is really good research practice. CALLER: Thank you. DR. SCHARTZ: I think, Carol, that accessibility term we really need to think about very, very broadly. Sometimes we think of accessibility only in terms of the disability community perhaps because they have been very outspoken using that term, but that accessibility goes for all sorts of things, it goes for people of different languages, for people coming from different cultures and it really is this idea of everyone being able to provide their input into -- at least in research studies, being able to provide their input in research studies. Sometimes that means having different formats. As a researcher you wouldn't think twice about having a Spanish version if you had individuals, if that was their language and a English version of something but also think about different…. if that was the language but also think about different questions or creating formats in a visual vs an audio presentation or having people provide information in a visual vs. audio. You can also think about doing your research in more of a qualitative or more of a quantitative approach. Ideally, to be getting both qualitative and quantitative information. By qualitative I mean usually information about people's experiences in their own words sort of open-ended questions where they can respond however they want or using whatever words or meanings that they want and in quantitative, I mean something that's going to be reduced to numbers, a forced choice where you might have a multiple choice type of question. If we use multiple formats to gather information, and multiple formats to present information, then we reach a much broader group of individuals, and we probably gather much richer information than we would using either approach individually. DR. BLANCK: And Helen, I'll ask her to amplify -- we're going to talk about this in a subsequent Web cast as well, increasingly for those of you involved with universities and doing human subjects research, we regularly get back queries on our human subject research forms asking us to change language so that it is accessible to individuals with disabilities, children, different cultures and so forth. Helen, we've had a couple of examples of that, haven't we? DR. SCHARTZ: It's usually language things, but the issue isn't so much that the human subjects comes back with a language change so that it is simpler and easier to understand as it is that when it's piloted, when we practice, when we go out to individuals in the community to see their response to materials, that they provide us feedback about what they don't understand or how to word things differently. Many times they'll give us examples, oh, you really mean -- and they'll give us a concrete example of what it is that we're trying to tell them and we go, yep, that's what we really mean. And many times for us it's been trying to provide those concrete examples and language that, you know, people other than researchers can understand. MS. RITCHIE: Are there questions that you have, Mark? MARK: Yeah, I've got two that y'all have been discussing one of them is from Georgia Tech so we'll go there first. How do we push the research enterprise out from the academic environment into the disability community to increase utilization? DR. SCHARTZ: This is Helen. I think it really needs to come from the disability community. I don't know as you necessarily push it from academics out there as it is the disability community says this is what we need, and I as an academic researcher who will do research or research's sake or any other reason says okay I can help figure out for you how you can research that question. It really isn't necessarily a researcher pushing it upon others as the usefulness of it has to come from what an individual in that community needs to know. DR BLANCK: And I would add in taking it to a complimentary but different level, several years ago here at Iowa we were funded by NIDRR to bring in young researchers from multiple disciplines from all over the country to talk about disability policy studies, research and issues, and these researchers happen to be individuals with disabilities themselves, Carol Gill was one of the featured speakers and others, and Carol maybe you want to jump in as well, but there is a need to train and empower, as Carol was saying, a new generation of researchers, who happen to have disabilities who are living and sensitive to the types of issues we're talking about. It's not unlike African American studies, it's not unlike gender studies or any other sort of area which has blossomed into a whole research paradigm. So it's not just the study of people with disabilities, it's the development of questions to be studied by people with disabilities themselves, and this field, as Carol said, is relatively young in that area. DR. GILL: Absolutely, we need to think of inclusion, just as Helen said about access broadly and I totally agree, we need to think of inclusion broadly, too. Inclusion doesn't just mean involving people with disabilities as research participants or even as advisors, it means getting more people with disabilities access to careers in research or substantive roles in research and it doesn't hurt if they get well paying roles in research, either, because economic access is a very important issue as well. I'd like to add one more sort of recommendation about getting research out to the disability community. I totally agree with what's been said that one of the best ways is for the research to emanate from the disability community including the critical research questions, but another way is that I think we as researchers must act on our responsibility to get our results out to where disabled people are, once again, to go to where the people are. And that means getting our results into the disability press, presenting our research results at disability organizations. I know that some of the best suggestions I've received for improving my research have come from those community dialogues, and so we in our unit -- we get out there. I mean, not only most of our researchers disabled and we have -- we nurture close relationships with the disability community, but when we have results we try to get out there and discuss them with disabled people in the trenches and learn from each other. And I think that's an important obligation for researchers. MS. RITCHIE: Well, thank you Carol and Helen for this excellent discussion this afternoon. A lot of food for thought. We're going to wrap up the Web cast, but before we do, I'd like to turn this over to David Klein to talk about the online training that you can access through our website. And he'll talk about not only the modules that are on the website, but also other aspects of the trainings that you can participate in. So David you want to go ahead and talk a bit about the online materials. DR. KLEIN: Yes, quickly, I would like to mention that this is a lot of this is really a reflection of our belief in the community-based resource center, that community-based research is what we believe is a real viable option, and part of that reflection is that we do have the training online available not only to the partners who are involved in the research and part of the center, but also to the public and if you go to the CBRC website home page and click on the online training link, it will take you to the training. We're getting it up there as it happens I guess, as we're presenting it. So we do have a module there on Participatory Action Research, and we have our most current one on introduction to research and we'll have a series of other trainings as the year progresses and they'll be uploaded and presented. Part of this is also a reflection of our commitment to providing training of real viable online training to people that can use it. So in some ways, it is available for those out in the community who want to know more about research, who want to be able to talk to researchers, and to be able to do maybe even their own research at different levels, and so these are becoming available. It will be, we hope, a resource to the community at large. Now, the training that we have now is introduction to research. The newest one is there. It will, at a very basic level, try to cover some of the concepts that have been discussed today, and a few others that we had planned and didn't get to. And it's a start. It's way to get to know about research if you're not familiar with it. So we encourage you to go there and look at the training, to browse not only that, but also the Participatory Action Research training if you haven't seen that yet. And then also I'd like to mention that we will have a bulletin board up and running about this Web cast. So, again, go to the CBRC home page and look for the bulletin board link and we'll try to for the questions that were presented to us online, we'll put those up and you can go and respond to those if you like and take a look and discuss and read. MS. RITCHIE: Now, this is Heather. Now, we have an E-mail list, correct, that people can join and they receive updates about the CBRC? DR. KLEIN: No. MS. RITCHIE: We don't? DR. KLEIN: What we do have is -- this is part of our bulletin board. If you log in -- if you create -- register on the bulletin board and you create an account there, you can join a bulletin board. We have a generic one that you can -- as part of the registration, you can select it and have a digest of the daily goings on the bulletin board E-mailed to you. And that way you can keep in touch with current things that are going on. MS. RITCHIE: Okay. Well, I misspoke. I learn something new about the project today. We're going to wrap up the Web cast then. I'd like to thank all of the presenters today, Carol and Peter, Helen, Mike and David. I'd also like to thank the staff of the community-based resource center, of which there are others who are not sitting at the table today. Likewise, we'd like to thank ILRU, Independent Living Research Utilization, who is our partner with the CBRC. Mark, would you like to do the thank yous for the Web cast crew? MARK: Well, certainly we'd like to thank Rob Dickehuth and Marie Bryant, and our Web cast team here at I.L.R.U. Sharon Finney, and Marj Gordon, Dawn Heinsohn, and of course the good questioner, me. MS. RITCHIE: Great. Thanks. And we'd also like to thank the National Institute on Disability and Rehabilitation Research for funding the community-based resource center as well as the technology for independence projects. I'd like to invite people to our next Web cast, which will be in September, and that Web cast will be on developing research questions. Thanks to all of you who joined us today. This concludes our Web cast portion of today's discussion and we'll be moving to the teleconference interaction with the participants in the project. Thank you and goodbye.