Kim Elmore, Toni Saia, Elizabeth Anh Thomson
Like other identity cultural centers on U.S. campuses, disability cultural centers (DCCs) emerged as safer spaces for people who share a marginalized identity. DCCs aim to develop pride in disability identity and share disability culture with the rest of the campus community. While the first disability cultural center was established by students in the early 90s, only in the past few years have the number of campuses with a center or planning one approached double digits. The purpose of this article is to introduce DCCs; this is the first of a three-part series.
Introduction of Disability Identity and Disability Culture
Similar to other identities, disability identity is complex and fluid, not singular nor static. Shakespeare (1996) contended that the process of disability identity arises in three areas: (1) the political, as in disability activism; (2) the cultural, as in artwork and music; and (3) the personal, as in understanding one’s own disability experience. Therefore, disability identity is a fluid and continuous process with no endpoint. Additionally, disability identity is likely to fluctuate depending on societal events and the sociopolitical climate in which individuals live (Corker, 2001). Due to its fluidity, individuals who have incorporated a disability identity may not represent the entire disability community. One’s disability identity is often a direct result of a political issue that threatens to shape the future of the disabled community. For example, recently many disabled people[1] gathered in Washington D.C. to protest cuts to Medicaid which would have been detrimental to the disability community (ADAPT, 2018).
Framing within Disability Studies, Disability as Part of Diversity
Disability studies is an academic discipline that approaches disability from an interdisciplinary perspective to define disability and understand the disability experience. It intends to reframe the study of disability by focusing on it as a social phenomenon, social construct, metaphor, and culture (Swain, French, & Cameron, 2003). Scholars seek to dismantle negative perceptions, assumptions, and misconceptions that surround disability. It rejects the dominant narrative of disability as a functional impairment that limits a person’s abilities. Shifting towards a social constructive perspective while examining the environment and the role it plays in shaping the disability experience, culture, and identity (Albrecht, Seelman, & Bury, 2001).
Using disability studies to inform the concept of a disability cultural center and all related programing will help to ensure a consistent progressive concept of disability and social justice values; spaces where all aspects of diversity and identities can be explored and celebrated. This is vital because the disability community is often excluded from conversations rooted in diversity and social justice initiatives (Davis, 2011). As Davis points out, “Is this simply neglect, or is there something inherent in the way diversity is considered that makes it impossible to recognize disability as a valid human identity?” (p.4). A disability cultural center can help shift the way diversity is discussed and constructed in higher education.
Why Disability Identity and Disability Culture Are Important
Acknowledging and asserting disability identity and culture is important for a number of reasons, especially for disabled students during higher education, when seeing themselves in leadership and faculty positions are rare. The National Center for College Students with Disabilities (NCCSD) estimate only 4% percent of faculty are disabled, and it is unknown whether or not they disclose their disability(ies) to their students (Grigley, 2017). College is a transitional time for young people. Often, college is the place where identities develop. Daniels & Booker (2014) describe identity development as incremental. As students develop, they need resources and people to support them. There is substantial student development literature on racial and sexual minorities. Only recently has there been more research on the identity of disabled students (O’Shea & Kaplan, 2017; Forber-Pratt, A., Lyew, D. A., Mueller, C., & Samples, L. B., 2017).
Affirming disability identity in a positive way is important because it communicates to disabled students that they are valued and important human beings. Disabled students have unique life experiences and opinions that can contribute to society (Grigley, 2017; Hill & Goldstein, 2015). A positive disability identity can help student exude confidence and pride. One thinks back to the well-known slogans, “Black and Proud,” and “Black is Beautiful,” used in the 1960s Black Pride Movement and later modified in the lesbian, gay, bisexual, transgender, and queer (LGBTQ) movement. This approach counteracts the Medical Model, where disability is seen as a deficit, the person is “sad and bad,” and the person needs to be “fixed” by the medical profession (Myers, Lindburg, & Nied, 2013; Evans, Broido, Brown & Wilke, 2017). Communicating disability identity may make disabled students feel a sense of belonging, which then may increase retention and graduation (Raver, Murchake, & Chalk, 2018).
Similarly, acknowledging and celebrating disability culture is also important for disabled students. Embedded within the idea of culture is people - a group of individuals together. This last part cannot be overemphasized. Having a group of people who are disabled means there is potential for creating community and group cohesion. From the creation of community, there is likelihood for making change and increasing social and cultural capital. While each person’s impairment[2] can be different and unique, experiencing ableism, disability discrimination, and oppression can, in general, be experienced in some way by everyone. This experience of discrimination and oppression can be part of disability culture, but it is not all of it.
Lastly, disability culture can express pride through the arts, literature, sport, and ways of doing and thinking. In higher education, disability culture could mean featuring a comedian with a disability during a school’s Welcome Week; providing open captioning and audio description for all campus movies;[3] or including adaptive sports for intramurals. Having disability culture represented in an integrated, institutionally supported, and non-token kind of way for the entire campus communicates a more inclusive and diverse campus.
The Emergence of Disability Cultural Centers in the U.S.
Many disabled students don’t learn about disability as a community they are connected to and an identity to celebrate until and unless they encounter disability history and culture in college. Disability is rarely a cultural identity that one is born into and the history of disabled people is rarely taught in grade school. A d/Deaf, disabled, neurodivergent, or chronically ill college student is more likely to learn about disability culture and history from a Disability Studies course, a cultural program, or another student or a student organization. But even these opportunities depend on privilege and chance. Most colleges and universities still do not have a Disability Studies course or organization for students with disabilities. And so far, college campuses are the only places where disability cultural centers are found.
Disability cultural centers emerged from the rise of civil rights movements in the 1960s and 1970s and in the signing of the Americans with Disabilities Act (ADA) in 1990. Disabled students at the University of Minnesota were inspired by this milestone in the Disability Rights movement to found the Disabled Students Cultural Center (DSCC) in 1991 and secure a physical space (like the four other UM cultural centers) on campus to share disability culture and pride with each other and with the rest of the campus community (Campus Life: Minnesota, 1992, April 26). The DSCC still exists today as a student organization with a physical center on campus. Two decades later, the DSCC was joined by two more cultural centers on U.S. campuses: the Disability Cultural Center at Syracuse University, which employs a full-time Student Affairs staff and a student coordinator, and the D Center at the University of Washington, which is student-led by two student coordinators and a part-time advisor. These centers also focus on creating a safe, inclusive, and accessible space for d/Deaf, disabled, chronically ill, and neurodiverse students to explore disability identity and culture, express pride, enjoy social and cultural programming, collaborate with other cultural centers and the local disability community, and provide resources for students, faculty, and staff with and without disabilities.
Fortunately, another twenty years didn’t pass before the next disability cultural center was formed. In the past couple of years, the University of Illinois-Chicago, Miami University of Ohio, the University of Arizona, and UNC-Asheville have all opened disability cultural centers and at least a dozen other colleges and universities are planning one, a process which can span several years. Many of these centers--like the one at the University of Illinois-Chicago--grew out of student-led initiatives to improve college life for students with disabilities and many--like at the University of Arizona--have day-to-day operations that are student led. Our current “ADA generation” of students want a connection to disability community and disability culture in college and are leading the increase in U.S. centers. When safer spaces devoted to supporting disability identity and culture on campus become part of the institutional landscape, students with disabilities will be less isolated and more integrated with campus life generally, increasing potential supports for college success.
While similarities between centers exist, each center is as unique as the campus context from which it emerges, and this new wave of disability cultural centers reveals new considerations and ways of doing things to those getting started. We’ll take a look at these in Part II of this series on Disability Cultural Centers on U.S. campuses.
Reflection Opportunities and Action Steps
Here are a few action steps to continue thinking and reading about disability identity, disability culture, and disability cultural centers in U.S. higher education. Consider doing one yourself and/or with your professional team at your institution. Have a dialogue with co-workers to brainstorm new ideas.
- Reflect on disability culture and how it might play a role in your work with disabled students. Notice people’s shared and different ideas. Notice if people have never thought about disability culture before and need more information.
- Do an Internet search using keywords “disability culture” and see what results you get. What do you think is missing?
- From the DCCs listed in the Resources, explore one of the cultural centers.
- From the Resources, read further about how disability is being viewed as an aspect of diversity.
- If you’d like to discuss disability cultural centers with others, join us on the Disability Cultural Center listserv. Email ahead@ahead.org to request permission to be added.
Resources
Disability Cultural Centers
Disability as Diversity Resources
Evans, N. J., Broido, E. M., Brown, K. R., & Wilke, A. K. (2017). Disability in Higher Education a Social Justice Approach. San Francisco, CA: Jossey-Bass.
Kim. E. & Aquino, K. C. (Eds) (2017). Disability as Diversity in Higher Education; Policies and Practices to Enhance Student Success. New York, NY: Routledge.
Myers, K. A., Lindburg, J. J., & Nied, D. M. (2013). Allies for Inclusion: Disability and Equity in Higher Education. ASHE Higher Education Report, 39(5).
Authors’ Biographies
Kim Elmore (she/her/hers), a doctoral candidate at Texas Tech University, is Coordinator of Disability Rights, Education, Activism, and Mentoring (DREAM), a national online organization for disabled college students and their allies. Kim has formally and informally interviewed college students who are d/Deaf, disabled, and chronically ill across the U.S. about their experiences developing disability identity and community. She recently co-authored a book chapter and student resource guide in Navigating the Transition from High School to College for Students with Disabilities (Routledge).
Toni Ann Saia (she/her/hers) is the program coordinator of the new Disability Cultural Center at the University of Arizona. She is a Ph.D. candidate studying Counseling Education and Supervision with a minor in Higher Education. Her dissertation is focused on the role of disability cultural centers on campus and how it changes the way disability is viewed and constructed in higher education.
Elizabeth (liz) Anh Thomson (they/them/their) is a fifth-year, Ph.D. candidate at the University of Illinois at Chicago, Disability Studies. Their academic research is exploring the day-to-day operations of the disability cultural centers (DCCs), in the U.S. and how DCCs inform diversity and inclusion conversations on campus. Liz identifies as a dark-skinned, Vietnamese adoptee, disabled, bi/queer, gender non-conforming, cisgender female. They previously held leadership positions at an LGBTQ cultural center and an Asian American cultural center; and earned a M.A., in Women and Gender Studies.
References
ADAPT - Free Our People! (2018). Retrieved from http://adapt.org/
Albrecht, G. L., Seelman, K. D., & Bury, M. (Eds.). (2001). Handbook of disability studies. Thousand Oaks, CA: Sage Publications.
Campus life: Minnesota; Cultural center for the disabled prompts debate. (1992, April 26). The New York Times. Retrieved from https://www.nytimes.com/1992/04/26/nyregion/campus-life-minnesota-cultural-center-for-the-disabled-prompts-debate.html
Corker, M. (2001). Sensing disability. Hypatia, 16(4), 34-52.
Daniels, J. & Brooker, J. (2014). Student identity development in higher education: Implications for graduate attributes and work-readiness. Educational Research, 56(1), 65-76. doi:10.1080/00131881.2013.874157
Davis, L. J. (2011). Why is disability missing from the discourse on diversity? The Chronicle of Higher Education, 25, 38-40.
Evans, N. J., Broido, E. M., Brown, K. R., & Wilke, A. K. (Eds.). (2017). Disability in higher education: A social justice approach. San Francisco, CA: Jossey-Bass.
Forber-Pratt, A., Lyew, D. A., Mueller, C., & Samples, L. B. (2017). Disability identity development: A systematic review of the literature. Rehabilitation Psychology, 62(2), 198-207. doi:10.1037/rep0000134
Grigley, J. (2017, June 17). The neglected demographic: Faculty members with disabilities. The Chronicle of Higher Education. Retrieved from https://www.chronicle.com/article/The-Neglected-Demographic-/240439
Hill, E., & Goldstein, D. (2015). The ADA, disability, and identity. JAMA, 313(22), 2227–2228. doi:10.1001/jama.2015.4936
Myers, K. A., Lindburg, J. J., & Nied, D. M. (2013). Allies for inclusion: Disability and equity in higher education. ASHE Higher Education Report, 39(5). doi: 10.1002/aehe.20011
O'Shea, A., & Kaplan, A. (2017). Disability identity and use of services among college students with psychiatric disabilities. Qualitative Psychology, Advance Online Publication. doi:10.1037/qup0000099
Raver, A., Murchake, H., & Chalk, H. M. (2018). Positive disability identity predicts sense of belonging in emerging adults with a disability. Psi Chi Journal Of Psychological Research, 23(2), 157-165. doi:10.24839/2325-7342.JN23.2.157
Shakespeare, T. (1996). Disability, identity and difference. In C. Barnes & G. Mercer (Eds.), Exploring the divide (pp. 94-113). Leeds: The Disability Press.
Swain, J., French, S., & Cameron, C. (2003). Controversial issues in a disabling society. Buckingham: Open University Press.
[1]Authors use identity first language (i.e., disabled before person) consciously because disability studies scholars challenge the use of person-first language (i.e., the person before disability) as it implies that the disability is an individual’s issue rather than the result of an inaccessible environment. In contrast, identity first language gives disabled individuals the opportunity to reclaim the word as an expression of solidarity and pride in one's identity.
[2] Impairment refers to the medical condition and/or diagnosis. According to the social model, an impairment becomes a disability due to social conditions with various barriers (attitudinal, physical, mental, and cognitive).
[3] Open captioning and audio description means everyone can read the captions or hear the description. Thus, they are not accommodations but support Universal Design.