Thompson Policy Institute is proud to introduce its first interview. Our interviews strive to share insight about the disability community in hopes to ultimately impact policy change. Thompson Policy Institute explores and researches topics such as education, housing and integrated communities for people and families with disability and autism. This interview features Chapman University professor Dr. Phil Ferguson who shares his expertise about Disability Studies, disability policy and disability history with us.
For more than three decades, Dr. Ferguson has pursued an interest in the field of disability studies with an emphasis on issues affecting people with intellectual disabilities. His research is focused on family/professional interactions and support policy, social policy and the history of disability, as well as qualitative research methods in disability studies and education. Prior to coming to Chapman in the fall of 2007, Dr. Ferguson held the E. Desmond Lee Endowed Chair for the Education of Children with Disabilities at the University of Missouri St. Louis. He also was on the faculty at the University of Oregon for 15 years. Dr. Ferguson is a past President of the Society for Disability Studies and was the Chair of the Board of Directors for Missouri Protection and Advocacy Services. In addition to numerous articles, book chapters, and monographs, Dr. Ferguson’s publications include Abandoned to Their Fate: Social Policy and Practice toward Severely Disabled Persons, 1820-1920 – a book and accompanying video on the history of individuals with intellectual disabilities and their families. Together with colleagues Dianne Ferguson and Steven J. Taylor, he is the co-editor of Interpreting Disability: A Qualitative Reader.
TPI: What is Disability Studies (DS)?
Disability Studies (DS) is, a nonclinical approach to the concept and experience of disability in society. The key parts are in many ways analogous to Women’s Studies, Race and Ethic Studies; it’s interdisciplinary. It’s not clinical in that its not teaching how to go in and “fix” someone, so it’s distinguished from fields like special education and rehabilitation in that regard.
One of the key points for me is that DS argues or implies the concept and experience of disability, it should be regarded as significant to understanding our history and evolution as a society as race, class, and gender, which are usually triumphant in sociology and history. One of the markers of differences that we use, the experience of disability, is sort of foundational I think if you want to understand oppression, marginalization, and devaluation whether it is people of color, or women, LGBTQ – whatever the category. I think trying to understand disability and the concept of disability is critical not just for the understanding of disability but also for understanding difference and how we create difference in society.
TPI: What is the impact of DS on education?
I don’t think the systematic change that needs to happen has occurred in education or in Special education. It would be changing the way we think about providing support and identifying differences in kids, but also how we think about creating learning environments. For me it involves a lot like some fundamental changes in how we go about teaching diverse learners.
TPI: What is the impact of DS on Policy?
There are huge gaps between policy and practices, there always are. You can see its influence in parts of legislation and in parts of policy. Institutionalization is perhaps one of the places Disability Studies has made a real impact. We have well-documented histories of institutionalization that occurred in this country and in Europe. The documentation of the abuses, stereotypes and stigma attached to disability has influenced policy related to these institutions and community based services.
TPI: Let’s talk about Neurodiversity.
I like the term, I like a lot of what they are saying. What bothers me is the way it’s made, it’s this kind of “exceptionalist” argument that’s done on the backs of people with disabilities. Instead of, as a way of being “disabled,” it’s a way of being “non-disabled.” I wish it could be explored and understood more fully, but also looked at in terms of the implications of the argument as well.
For example, I just went to an conference on dyslexia, all the conversations about cognitive diversity said, “we’re not really disabled, we are creative, and we just have a different way of processing information,”-that’s great, I love hearing self- advocates talk about challenging stereotypes, but what they are doing is carving themselves off from the disability community. In essence they are saying, “I’m not going to challenge the stigma and stereotypes as applied to disability, because I’m not part of them,”-instead of challenging the basic inequities and assumptions and oppressive concepts about disability.
“I think they see is as a self-advocacy argument, but there’s a sort of walking away from the disability category instead of changing that part of it. I think they see that, I don’t know if they see it, sit down and analyze it. I don’t think this is an intentional thing. The person thinks, I want to argue for myself, and so they do that. They fall into that without thinking of the implications of what they are doing when they say, “I’m not disabled.” I think it happens in the other direction as well. In the past, where people in the disability community, have said, “well you’re not really disabled enough to talk about oppression. You might talk about this Asperger stuff but come on…” A friend of mine, David Weather, calls it, ‘competitive misery,’ “I’m worse off than you are, my group is much more tragic than your group.” You get this kind of exceptionalism, in reverse. So I think it happens in both directions and it has slowed down coalescing a really effective disability community. I think that will be debated in the future.
In terms of education, one of the things I see happening within the cognitive neurodiversity group is making it a case for separatism in educational settings. There are a lot of dominate groups who feel kids with learning disabilities or dyslexia can’t be educated in the public schools and private schools are created. I think there is an economic class based element, but what really interests me is that they are carving off this exceptionalist kind of position of “I’m not disabled.” It has been a new version of segregation saying, “We are special. We need a separate school, that appreciates our differences, our uniqueness.” Rather than saying, “how can we reform public education and obtain the kind of support needed.”
The whole economic analysis of this is if you’re a rich white kid who can’t read, you are part of the cognitive diversity movement. If you’re a poor kid of color who can’t read, then that’s a very different kind of experience. I’m not sure the whole community is getting the benefit from the cognitive diversity movement yet.
TPI: “What are the implications for future research?”
I think we need more work on intersectionality in the understanding of disability across disciplines. It is much more complicated than studying the cumulative category of gender and sticking the category of disability on it. Ideally it’s bringing people who have had an interest in disability before now who are discovering they are also interested in studying race, gender, and sexual orientation. There is the flip side of people in the DS community who are discovering all the work that has been done in feminist studies and race studies and applying that to their work.
This is related but slightly different, there is a lot of interest in understanding how DS applies globally to people in developing countries. They are interested in places other than the industrialized west (where a certain level of economic stability and educational rights are already present). In other places, it maybe feels like it’s a luxury to talk about
the social model
when they are struggling to feed their family, or gain the right for girls to go to school, or vote.
TPI: What are the implications for policy?
There is potential for policy that’s protective of people’s basic rights as well as programmatic policy programs. Hopefully, there will be some continued attention to that side of civil rights policy and how it gets implemented. There is still a lot of reform needed in education and in special education policy. I’m not really optimistic about this. I think we are stuck in a categorical approach right now at the policy level in the field of disabilities. I think that’s the fundamental barrier. There is tremendous backing of families in the categorical approach, I think that will be tricky politically.
Interview by Lisa Boskovich for Thompson Policy Institute