Interview with Wendy Harbour, Ed.D. from the Association on Higher Education and Disability on Students with Disabilities, Deaf Students, and Disability Services in Higher Education
About Wendy S. Harbour, Ed.D.: Wendy S. Harbour is Associate Executive Director for Programs and Development at the Association on Higher Education and Disability (AHEAD). She is also Director and Co-Principal Investigator at the National Center for College Students with Disabilities (NCCSD), which is based at the University of Minnesota’s Institute on Community Integration. A dedicated advocate and researcher committed to advancing educational outcomes for students with disabilities and d/Deaf students, Dr. Harbour was appointed by President Barack Obama to the National Council on Disability, where she served until 2020.
Dr. Harbour’s research has been published in important journals on disability, including Journal of Postsecondary Education and Disability, Review of Disability Studies: An International Journal, and as chapters in many edited collections. Dr. Harbour also co-edited the collected volume Disability Services and Campus Dynamics and wrote the conclusion for How did You Get Here? Students with Disabilities and their Journeys to Harvard. She has been a lecturer in policy and practice for St. Catherine University and is an Affiliate Faculty member of the Educational Policy, Studies and Practice department at The University of Arizona. Prior to her tenure at AHEAD and the NCCSD, Dr. Harbour was the inaugural Lawrence B. Taishoff Chair for Inclusive Education at Syracuse University, where she also served as Executive Director of the Taishoff Center for Inclusive Higher Education, Co-Director of the Disability Studies Program, Director of the American Sign Language (ASL) program, and Co-Director for the Center on Human Policy.
Dr. Harbour received her Ed.D. and Ed.M. from the Harvard University Graduate School of Education, her M.Ed. in Educational Leadership and Administration from the University of Minnesota, and her Bachelor’s degree in Psychology from the University of Minnesota.
Prefatory Note: The following interview follows in Dr. Harbour’s use of d/Deaf as a term to include both those who identify deafness as a medical condition (“deaf”) and those who identify as culturally Deaf users of ASL. These terms are not necessarily mutually exclusive. d/Deaf is used when both meanings are applicable. For more information, see footnote 6 in Dr. Harbour’s piece, “Cripping and Deafening COVID-19: Reframing a Pandemic in Higher Education.” Available at: https://commons.lib.jmu.edu/ijr/vol4/iss1/4.
Interview Questions
[OnlineEdDPrograms.com] May we begin with an overview of your academic and professional background? How did you become invested in working to promote educational equity for d/Deaf students and students with disabilities?
[Dr. Wendy Harbour] My career is not one that little children aspire to. No one says, “Gee, I hope I direct a national center for college students for disabilities,” and acts that out with their dolls [laughs]. Some of it was accidental. I started becoming deaf when I was in high school. I was originally training to be a musician, and I had music scholarships. Right around the time I had to make my college choice, we realized that my hearing loss was progressive. I ended up attending a liberal arts college where I could explore different careers.
I became deaf while I was there. My hearing loss meant I could not function well in classrooms and around other people. I moved to the University of Minnesota to finish my degree and learn Sign Language. There, I was exposed to the very first disability cultural center in the world — the Disabled Student Cultural Center (DSCC) at the University of Minnesota. I was on one of the first students boards for that center. I was learning American Sign Language (ASL) and about Deaf culture, the Deaf community, and Deaf history. At the same time, I was learning about disability history, culture, and identity. It was coming at me from both directions. I could see the overlaps and the differences. I told people it was a little bit like The Matrix in choosing the pill that gave me a different view of something I had never noticed even though it was all around me.
After a short stint in special education, I ended up working in disability services at the University of Minnesota. That gave me the perspective of being on the other side of the desk as a professional. My personal experience, student experience, advocacy, and activism all congealed together, and I realized I needed a doctorate to teach about any of this in academia.
My undergraduate degree and my Master’s degree in Higher Education Policy are from the University of Minnesota. I got a second Master’s in Teaching and Learning and my Doctorate in Educational Administration, Planning, and Social Policy at Harvard University, studying disability in both special education and higher education. After that, I worked for quite a while as the Taishoff Chair for Inclusive Education at Syracuse University, where I also ran some research centers and an inclusive higher education program for students with intellectual disabilities. I also taught disability studies and helped set up their Disability Cultural Center.
Now, I work for the Association on Higher Education and Disability (AHEAD). We had a federal grant from the U.S. Department of Education to set up a National Center for College Students with Disabilities in 2015. That has now moved to the University of Minnesota, but I still direct the Center and work with AHEAD. I absolutely love working with college students who have disabilities. I am very happy I ended up in this field even if that was a complete accident. As a person with a disability and a mom of a kid who has disabilities, I am invested in this field personally as well as professionally.
[OnlineEdDPrograms.com] You are currently Associate Executive Director for Programs and Development at the Association on Higher Education and Disability and Center Director and Co-Principal Investigator for the National Center for College Students with Disabilities. Would you provide us with some background on these organizations and describe the work you do with them?
[Dr. Wendy Harbour] The Association on Higher Education and Disability is a national, professional organization for people who are providing services for students with disabilities in higher education, but it really works with anyone interested in disability and higher education, including graduate students hoping to enter the field. It also runs the scholarly journal The Journal of Postsecondary Education and Disability. Even though it is primarily an organization for disability service professionals, it also tries to foster an environment where research is being done on college students with disabilities, their experiences, disability services, the needs of faculty working with disabled students, and many related topics.
The National Center for College Students with Disabilities (NCCSD) is federally funded by the U.S. Department of Education. It is a national technical assistance center. We respond to any question related to disability in higher education. My favorite example is that we had a mother call about accommodations for a child in a preschool that was run on a college campus. We have faculty who call, asking how to provide accommodations for students or integrate disability into their syllabi. We have students who call us from a variety of backgrounds. They may be enrolled part-time, full-time, or auditing. They may be senior citizens or younger people. We also serve parents and families.
We are now in the second cycle of funding for the NCCSD and the Department of Education has asked us to work with future college students who have disabilities, as well. We are beginning the process of doing more outreach to high school students, families, and teachers about how to make the transition to college smoother and to offer the option of attending college for more students. We are working to raise expectations that more students with disabilities will go to college or explore alternative postsecondary options.
My main, full-time role is directing the NCCSD. I am co-principal investigator with Brian Abery and Renáta Tichá at the University of Minnesota. I oversee the Center and make sure we are doing the work we are supposed to do. In addition to providing technical assistance, we have a clearinghouse of information online (which is under construction). We set up the Campus Disability Resource (CEDAR) database where anyone can look up any institution in the United States and find the disability resources provided by that college or university.
We also do research and have a national student group called DREAM, which is an acronym for Disability Rights, Education, Activism, and Mentoring. It functions as an online disability student cultural center, and my role is essentially to be the faculty advisor to this group, although we hope to hire a grad student Coordinator soon. They get funding from the NCCSD, but it is really run by and for students with our support.
[OnlineEdDPrograms.com] Would you introduce us to how you define equity in your own research and practice? How do you see the concerns of d/Deaf students and students with disabilities as represented or underrepresented in current academic discourses surrounding diversity, equity, and inclusion, and are there ways that centering these students expands or nuances our understanding of equity in education?
[Dr. Wendy Harbour] I encourage people to consider adding an A to the acronym D.E.I, which would stand for access. This is an important thing to focus on when you are talking about disability. But “access” can be about accommodations or about access to the campus community. And diversity, equity, and inclusion apply to disability, even if people are not usually talking about it that way.
With both disability and d/Deafness, there is, first of all, a legal requirement to provide support for these students. So, even though D.E.I.A. initiatives across the country are being threatened on a daily basis, students with disabilities still need to get their accommodations. There is no way you can legally change that. Not only do students need access but campuses need to be accessible for faculty, staff, and visitors. It is a campus-wide issue.
In terms of equity for students with disabilities, something that is very confusing to people is that this is not always about things being equal. It is about equity. Students with disabilities may need something extra, like more time to take a test, or a sign language interpreter, or captioning. Sometimes faculty feel as if this is an unfair advantage without realizing that it is actually just what we call “leveling the playing field.” This is similar to what equity means with respect to BIPOC students, first generation students, or students with fewer economic resources, but for students with disabilities there are some unique legal requirements.
At the same time, because disability is often equated with medical, physical, or cognitive conditions that can be formally diagnosed and legally defined, that does not mean disability is all about accommodation and access. It is also part of diversity on campus. I get very frustrated because college students with disabilities often have no real understanding of different perspectives on disability or deafness as more than a medical condition. They often feel like they are the problem, when it is really a problem with ableism and audism [discriminatory attitudes toward d/Deaf people and the biased preference of hearing people].
If I cannot discuss things with my classmates in a course, it is not because there is a problem with me, but because there is a problem with communication in the classroom. All of us, not just me, do not have a sign language interpreter available. Culturally Deaf people who use ASL understand this. We value ASL and our culture, and understand hearing people’s oppression of our language and way of being. Whether or not they agree with the concept, people usually know about the terms “racism,” “homophobia,” “sexism,” etc., but “ableism” and “audism” rarely enter discussions about discrimination.
While students may learn about race, gender, or a variety of other cultural or identity differences, disability is rarely in the curriculum and when it is, it is usually framed as an individual rather than a systemic problem. The academic field of disability studies thinks about disability in society from all different angles. If we think about African American studies, for example, we can learn more about ourselves and our culture by understanding more about African Americans and their experiences, while African American students learn more about themselves and their identities. The same goes with students with disabilities and disability studies.
Even the way people hesitate to say the word disability and instead use the term “ability” is problematic. The term “disability” carries negative stigma, but it is important for people to say it. We cannot talk about ableism, the law, or access, unless we are using the term disability. Many culturally Deaf people who use sign language resent being called disabled because they buy into the negative connotations of disability. Sign language does make Deaf culture unique because it gives Deaf people their own language and culture. But there is nothing wrong with the term disability. People can want their illnesses or disabilities to be better or even cured, but that still does not mean ableism goes away or “disability” implies something wrong with any individual or disabled people as a whole.
Disability studies needs to be at the forefront of our discussions. Understanding disability is not just the job of disability services; it has to be a campus-wide goal. Everyone needs to be learning about it.
[OnlineEdDPrograms.com] One major interest in your career as a researcher has been universal design for learning. Would you explain what universal design for learning is, and some of the ways you have advocated for its implementation through your research and practice?
[Dr. Wendy Harbour] Universal Design for Learning (UDL) started with architecture and technology. Say you have a really beautiful building and you want to make it retroactively accessible, so you build a really ugly wheelchair ramp and stick it on the front of the beautiful building. Not only will it be an ugly wheelchair ramp on the front of the building, but it probably will not be as well-designed and useful to other people as it would be if you built the front of the building with a beautiful ramp instead of beautiful stairs. Doing the latter is what we call universal design.
Using that idea, people started thinking about what it would look like to design curriculum and learning to be as inclusive as possible from the beginning. The general idea was that we should talk about that in terms of disability. Existing methods of designing teaching and learning, like differentiation, backward design, multiple intelligences, and even culturally responsive teaching do not necessarily explicitly include disability into their considerations.
Universal design includes disability. Its philosophy is that the more inclusive things are for your universe of learners, the more people are going to benefit from your curriculum. If you offer flexibility and choices — for example, if you do not only use multiple choice exams for grading but also offer group discussions, labs, in-class essays, and so on — you are going to get a lot more information about what students are learning, how they are learning, and how well you are teaching. People started to realize that nondisabled students could benefit from UDL, as well. You just need to have a broad concept of the universe of learners who might be in your course.
That is an example of universal design for learning. It has more specific principles, but I view it as general philosophy. There is no one right way to do it because if you take a law school classroom and an introduction to English literature course, they are going to have very different needs. In either case, though, you want multiple ways for students to be engaged, show what they know, and be supported in their learning process.
[OnlineEdDPrograms.com] In 2011, you published the co-edited volume Disability Services and Campus Dynamics. Would you reflect on what you see as the role of disability services in the struggle for educational equity? Are there key ways in which approaches to disability services have changed or developed since the publication of this volume?
[Dr. Wendy Harbour] I think the field of disability services is moving forward, especially as disability studies and universal design inform it. Further, in 2008, the Americans with Disabilities Act was amended to make the definition of disability more flexible. Case law was showing it was too restrictive and was not what Congress intended. Today, the types of students who are coming into colleges and universities are more diverse and have higher expectations for services. I think all of these things are pushing the field forward.
Still, there is quite a ways to go. I think AHEAD and the NCCSD are helping lead us in the right direction, but many campuses do not have the resources to access the professional development materials that are out there. One thing the NCCSD is working on with AHEAD is making sure anyone can access information about disability and higher education, including how to provide accommodations and services.
I also think, because of ableism and because the focus is most often on access and legal compliance, many institutions pursue the bare minimum of what they can do, which leads to many problems. For example, say you have a learning disability and your documentation is from a high school special education program. It is possible that in the same city or neighborhood, one college will say that is fine and give you services and another college will reject your documentation and deny you services. Right now, this is perfectly legal.
There are a lot of ways that this process becomes far more difficult than it needs to be. Faculty will call and say, “I do not think students with ADHD should have accommodations at all, they just need to put in the effort.” If you are a disability services professional operating from a universal design perspective, your response is going to be very different than if you are looking at the issue as mere compliance. Students shouldn’t need to prove themselves or be put on the defensive in order to get legal rights. There are many ways that offices providing disability services can continue to work on equity and be advocates for students on campus.
I also think a lot of campuses think disability services providers should do everything related to disability on campus with about a quarter of the funding they actually need. Like many other offices, they end up underfunded in a way that impacts students. Of course, there are also laws protecting the privacy of students with disabilities. An unintended consequence of this is that students can end up very isolated. Disability offices have the power to email students or find other ways to help them connect, for instance, by hosting events where everyone comes together. This does not violate any laws. There are numerous ways to help students find and build community, but a lot of people cannot think far ahead because they are overwhelmed or worried about the law and keeping students’ privacy in very rigid ways.
There are a lot of barriers in place. Like many fields, part of the field is progressing very quickly while part of it gets left behind. The NCCSD is trying to make sure everyone is working on this together.
[OnlineEdDPrograms.com] One of your more recent publications is “Cripping and Deafening COVID-19: Re-Framing a Pandemic in Higher Education.” Would you introduce our readers to the critical approaches of “cripping” and “Deafening” and highlight some of the key ways they help us understand how universities can better orient their responses to COVID-19 and future pandemics?
[Dr. Wendy Harbour] In that article, I went backward and I looked at previous pandemics like the flu, HIV/AIDS, and typhoid. Each time there was a pandemic, it influenced education. After they hit, we saw changes in higher education, and usually for the better. In the moment of the crisis things were terrible, and after the crisis, higher education improved.
In this piece, I argued that with COVID-19, we had the opportunity to start talking about disability. People look at COVID-19 as an illness, and it is, but its impact on higher education is really becoming about disability. People with long-haul COVID have symptoms that may never go away. If you suddenly have a significant portion of the campus that acquires a disability very quickly, the campus has to adjust and figure out how to keep them in the community, accommodate them, and educate others about what is happening.
As masking restrictions were loosened and students came back to campus in person, a significant group of those students were providing care to elderly parents, had immune disorders, or realized they worked better when teaching was online. The same thing was happening with staff and faculty. Campuses are adjusting to that, as well. There have been many changes, some of which may not seem directly related to disability, but for people with disabilities they are a big deal. Suddenly Zoom has captions, which is wonderful for me and other d/Deaf people. We figured out how to bring in other interpreters. Some people have discovered they learn better through online courses. Faculty learned how to teach courses when students (or faculty themselves) may get sick or be recovering, how absences work (or do not) work, etc.
In that article, I asked people to think about these changes caused by the pandemic in terms of disability. When I use the term “cripping,” that is an in-culture, in-community word that disabled people can use to explain how the reality of having a disability impacts things like time. With “crip time,” for example, you may need to be at a job at nine AM, but if your disability is flaring, or the city’s van system that takes you to work is late, or you are dealing with medicine shortages, you may have to “crip” time. Your start time is nine, but there is an understanding that the person is running on crip time and that might not be the same as administrative time. That is not lowering standards, it is just being realistic.
I am asking the academy and higher education to think about what this means in terms of cripping curriculum and policies. This means going beyond thinking about access and considering that maybe the way people with disabilities are doing things is better. Maybe parents should be able to say that administrative time does not work for them because the sitter is late or their kid is sick. Thinking through disability can open our minds to new and creative aspects of society and higher education.
Cripping things means taking ideas and norms from disability and applying them to broader educational and social contexts. I think this can be very powerful, and now is our chance. A window has opened because COVID has made us open our minds to different ways of doing things. Let us seize that and ask disability studies professors, disability service professionals, and disability researchers how we can learn.
Being a d/Deaf person, using sign language, and considering myself part of the Deaf culture, I use the term “Deafening” in a similar way as “cripping” to talk about what sign language culture and Deaf culture can teach us. In a nutshell, then, this article is about saying, “Let us take this horrible thing that happened and use it as an opportunity to change higher education for the better.”
[OnlineEdDPrograms.com] You have also been involved with the Historically Black Colleges and Universities (HBCU) Disability Consortium. Would you discuss how the intersections between race and ability create unique needs for students and how this consortium aims to help support them?
[Dr. Wendy Harbour] The HBCU Disability Consortium was founded while I was at Syracuse University. It was established by a grant from the U.S. Department of Education between Syracuse University, Howard University, and the University of the District of Columbia. We worked to make a consortium of disability service providers from every HBCU in the United States and its territories. We set up a Listserv, and created a website called Black, Disabled, and Proud for African American and Black students with disabilities and others to access resources. We also worked with the Museum of Disability History, which sadly did not survive the pandemic, to create an online exhibit.
The grant itself ended in 2015. The Listserv is ongoing. We are currently working on a second cycle of the grant with the U.S. Department of Education to set up a Minority Serving Institution (MSI) Consortium to start a conversation about how different cultures and ethnicities at different MSIs are doing disability. We approach this from a strengths-based perspective. Who is going to know how to serve Black and African American students with disabilities better than an HBCU? Why not go in and figure out what they are doing, why they are doing it, what is working, what is not, and learn from them? Why not connect all the HBCU disability services professionals together to make services at HBCUs even better?
The HCBU Disability Consortium led to really interesting conversations among the HBCUs. It was a really remarkable experience, and I was privileged and honored to be a part of it. We published a chapter on our work about the word “overcoming” [“‘Overcoming’ in Disability Studies and African American Culture” in the collected volume Negotiating Disability: Disclosure and Higher Education].
One of the conversations we had was about how people with disabilities, especially in disability studies, hate the word overcoming because it implies that we have to be superheroes who climb mountains, conquer all things, while acting as nondisabled (or “normal”) as possible. In African American culture, we know that the word overcoming has a very different meaning exemplified in the resistance song “We Shall Overcome.” How do we mesh these two definitions of overcoming to work on disability and race? There is a group of researchers working on this question. They call the field “DisCrit.”
These intersections between disability and race are really complicated. Especially in this country, bodies that are considered “different” and people of color have often had discourse of disability used against them. Slavery and colonialism were justified on the basis of “scientific” racism that claimed people with dark skin had lower intelligence and white people were their caretakers and owners. Running from slavery was considered a mental illness. All this still haunts us today.
Even in K-12 education, if you go into a classroom of students with disabilities you are likely to see that most of them are children of color. This is a form of segregation that is still happening today. If those kids in special education decide to go to college, there is no way they are going to identify as a student with a disability, claim that term, take a disability studies course, or go to a disability cultural center because they have had that word used against them.
Those are just some of the things we have learned, but it was an amazing experience, and I sincerely hope we can get the MSI Consortium running soon, so we can continue these conversations on a broader scale.
[OnlineEdDPrograms.com] Based on your research and experience, do you have advice you would give to scholars, educators, or administrators seeking to advance educational equity through their own research?
[Dr. Wendy Harbour] Yes, and it is pretty simple. Remember disability. Keep disability in mind. There are so many amazing higher education scholars, so many federal and national research studies, and so much smaller-scale and qualitative research studies that just do not think about disability. Yesterday, I looked at a database on the economics of higher education. It pulled information from the federal government, and it could have included disability information but it did not. I hoped some researchers I know could explore the economics of disability in higher education. However, there is no way to do it with this dataset because they excluded disability. This happens over and over.
We do not think about disability as a demographic variable. We use the term disability in negative ways. We do not have nearly enough disabled researchers. We do not ask disabled students to become teaching or research assistants. We do not have accessible labs and methods. There are so many ways we can do better and learn more. None of that will happen if higher education does not remember disability and think of it in new ways. My life’s work is to pursue systemic change so we can all do better, and higher education can do better.
Thank you, Dr. Harbour for sharing your insight into fostering equity for d/Deaf students, students with disabilities, and disability services in higher education!