The Civil Rights Movement spurred social changes that impacted many, including people with disabilities; while the ADA ideally provides the groundwork for greater accessibility, accessibility is an ideal that is not yet fully realized. The professionals in Disability Studies and those in Disability Services are working in often parallel contexts with little overlap and still very limited intentional interaction. This article suggests possible goals that deliberate coalition forming between the fields could set that would facilitate greater accessibility to educational environments, coalitions being informed in part by the specialized knowledge that each field contributes. As happened during the Civil Rights Movement, ideas and processes which begin on campus then have an opportunity to be carried out into broader social contexts, increasing equitable access beyond campus settings and more fully realizing the goals of the ADA.
When I was at U.C. Berkeley in the '60's, I and almost every other student on campus became involved in the Civil Rights Movement. We were fighting for the basic rights of black people. But, during my involvement in that movement, I suddenly realized something that has since been extremely important to me —that I'm part of a minority that is as segregated and devalued as any in America's history. I am part of the disabled minority.
The social unrest of the '60's is as much the birthplace of the Disability Rights movement as it was the igniting point for Civil Rights and Women's Rights. Those who were members of disenfranchised groups began to demand access to 'basic' rights that white middle and upper class men had long enjoyed. Theoretically social-access and rights in the U.S. and Canada were available to all, however, in practice there were many layers and types of invisible ceilings and visible barriers in place which have and sometimes still continue to impede equal access to opportunities and spaces. Those of us who are disabled for example, continue to find that obtaining and maintaining employment is a challenge when one requires accommodations, despite laws to the contrary, just as despite laws to the contrary a black man in New York will wait longer for a cab driver to pick him up than will a similarly dressed white man. Legislation while a necessary step in changing social actions is only one step on a long path towards altering how people behave and react, particularly when facing situations that are new to them.
As hard as it may be for those within the Disability Studies community to remember — perhaps most so for those of us living with disability — disability is still unfamiliar and/or uncomfortable for many who are ignorant of the presence of disability throughout the range of their social contexts. I was reminded of this during a presentation to new faculty when I disclosed that one of the disabilities I live with is dyslexia, like many of the students on the campus where we work, and shared some of the ways that language processing disorders can complicate learning. At the end of my presentation a well-intentioned young professor approached me and said basically, "You sounded very good, you didn't sound dyslexic at all." I wondered what he would have expected a dyslexic person to sound like before this? He is just one example of many, an example of how often people still do not realize they live in a world where people with disabilities are all around them, doing all kinds of work. This lack of awareness and knowledge is present among faculty and staff on campus just as it is in the wider social community, which is one of the reasons that the fields of Disability Studies and Disability Services remain so necessary.
While these two fields share concerns about the social context of disability, how the fields developed in parallel ways because of different origins and purposes has led to a current context where there is little overlap between the work of these fields. This is both natural given their different backgrounds, and limiting, in ways that perhaps neither field has had an opportunity to reflect on. While there is a movement afoot in each field to more deliberately create intersections with the other, it is less clear that there has been analysis of why these intersections will initially be difficult and require very purposeful enacting, nor has there been clear enunciation of what some potential areas of collaboration might be. I would suggest that this separation between fields in turn has an impact on the implementation of the ADA in both classroom and support settings. This leads me to ask the questions: as participants in these fields, what do we, what do the fields, and what does on-campus implementation of the ADA have to gain from collaborative projects deliberately taken on when we choose to work together? To work our way towards more fully considering these questions it will be helpful to start by considering how disability studies and disability services ended up where they currently are and why collaborative efforts are neither easy nor necessarily natural.
Allan's Story and Special Ed1
Allan's story is told on the U.S. Department of Education website which celebrates 25 years of the Individuals with Disabilities Education Act (IDEA) as amended in 1997, IDEA being a precursor to the Americans with Disabilities Act (ADA). Meant to show the difference that IDEA has made for the disabled, Allan is an iconic figure representing what fate could be for those labeled disabled in previous generations. Born in the late 1940s, Allan was left without explanation as a foundling at an institution which warehoused people with disabilities. One must infer from what is not said in this account of Allan's life that Allan must have somehow looked physically different, perhaps been part of a minority group or with some other physically visible difference. It seems unlikely that a healthy, white male infant, even one left on the doorstep of a warehouse for people with disabilities, would have automatically been institutionalized. No mention is made in this telling of Allan's story of what stigmatized him according to the society he was born into.
What is told is that when he was 35, in the 1970's, Allan had become so institutionalized, that he'd taken to self-harming, slapping himself in the face to the point that he was blind and had a "heavily callused face"; when for the first time, at the age of 35, Allan was finally "assessed" he was found to be "of average intelligence" (U.S. Department Ed.). It is interesting to note that Allan's story is used to highlight how far education for people with disabilities has come; yet scratching beneath the surface it would appear to be a story of how visible difference somehow sentenced Allan to life in an institution. What stigma did Allan display which landed him where he was from infancy?
The self-harming behavior that Allan exhibited is not uncommon in individuals who are warehoused in institutions. Studies that began in the 1960s and continued through the 1980s showed that if some kind of stimuli and interaction was provided, the self-harming or acting out behavior exhibited by those who were institutionalized, would markedly decline (Bragg &Wagner; Horner). Horner's study for example showed that even "profoundly retarded" children would play with toys and interact with adults, if they were given the opportunity to do so, rather than being left alone in sterile environments. As social standards again shifted and families increasingly refused to follow medical advice to institutionalize and forget their children, young people with disabilities were not allowed to move directly into mainstream education. They would be forced through further stigmatization as they were segregated in Special Education classrooms.
History had already established that the rights a citizen did or did not have were largely dependent on federal law. Disability rights activists realized this and increasing public pressure was placed on lawmakers. In 1975 the U.S. Congress enacted PL 94-142 — the Public Law Education of all Handicapped Children Act (EHA), which has been revised as the Individuals with Disabilities Education Act or as it is now known, IDEA; these revisions (PL 101-476) and amendments (PL 105-17) expanded services to include assisting people with disabilities transition into adult living (U.S. Department Ed). While EHA was an important first step, children with disabilities were still not being granted the civil rights and protections of other children; they were being given access to "Special Ed" and limited futures.
Disability Rights Movement and Disability Services
Students with disabilities and their families soon discovered that there was a difference between having access to Special Ed and being prepared for futures that would include college and professional careers. In Inclusion and School Reform, Lipsky and Gartner discuss the steps that would be necessary in order for students with disabilities to have similar educational opportunities as other students. When Inclusion and School Reform was first published, in 1997, the "Current System" the authors address was still largely Special Ed and separate education for students with disabilities. At that time, legal cases were forcing school systems to integrate all children into regular classrooms with the use of aids for some children (including an adult attendant) when necessary. The movement Lipsky and Gartner were documenting was the change from the practice of school districts automatically segregating children identified as disabled, to the legal provision that a school district had to prove there was a need to keep the child segregated in a Special Ed classroom. Special Ed classes were slowly being replaced by what would eventually become known as "resource rooms," which would provide specialized education or therapy for a child at select times during the school day, with the child in-class with peers the remainder of the day.
In No Pity, Joseph P. Shapiro discusses some of the pioneers, students with disabilities, who fought to gain access to education at the university level — again a fight that started decades before Bush would sign the ADA. Shapiro points out that while the University of Mississippi was very publically being integrated in 1962, no media attention surrounded a different kind of integration that was happening on the campus of Berkeley; Ed Roberts a "postpolio quadriplegic" pushed the boundaries of accommodations that the institution was willing to provide when he became a student there the same semester of 1962 (41-7). In his fight to obtain access Roberts led the way for other students with disabilities, who were originally segregated in 'dorm' housing which was in fact a floor of the university hospital. This group of students became politicized—in part because they were living through the civil rights movement and witnessing the difference that strong self-advocating could make—and in part because they encountered discrimination in housing, transportation and other everyday situations. While students were prepared to fight their way into schools, however, schools were not prepared to provide services for so many 'types' of students they had never previously encountered. The Disability Services field would develop as schools scrambled to meet the needs of new students and new legal mandates.
Those professionals at the higher education level who were tapped to become the first generation of disability service providers found they were creating a field as they went. It became apparent that opportunities to share information, resources, responses, and practices would be invaluable. The Association on Higher Education and Disability® held their first annual conference in 1977 (AHEAD 2013). What began with 100 service providers in Arizona gathering to exchange educational information and best practices grew into a national conference which would eventually attract service providers from other nations as participants and members; as of 2014 AHEAD has 2,800 members from countries including the U.S., Canada, Australia, England, Greece, Ireland, Japan, New Zealand, South Africa, and Sweden (AHEAD, About). While not the only professional affiliation for disability service specialists it remains the largest.
As the ADA notes under Findings:
Individuals with disabilities continually encounter various forms of discrimination, including outright intentional exclusion, the discriminatory effects of architectural, transportation, and communication barriers, overprotective rules and policies, failure to make modifications to existing facilities and practices, exclusionary qualification standards and criteria, segregation, and relegation to lesser services, programs, activities, benefits, jobs, or other opportunities (Sec. 12101 a.5).
While the professionalization and growth of the Disability Service field had been underway for 13 years by the time the ADA was signed, the Office for Civil Rights (OCR) would rely on passage of the ADA to help pressure those academic institutions which were reluctant/ignorant when it came to adopting more inclusive practices and spaces. OCR rulings in response to claims brought under the ADA also became 'teaching moments' for Disability Service professionals and administrations around the country. Seeing what other institutions were taken to task for informed others of what to check in their own policies and practices.
AHEAD also implemented program standards, professional standards, and a code of ethics to help guide disability service specialists (DSS) in making decisions about how to respond to student and institutional requests. From the professional DSS viewpoint, there is a responsibility to ensure that students with disabilities have the most barrier free access possible to education contexts.
Parallel Origin Stories
Disability Services as a field grew out of practical needs to have an individual/office at each school which would be responsible for providing services for students with disabilities. Disability Studies grew out of the disability rights movement and moved into the classroom as instructors with disabilities and their allies began to bring the concerns of citizens with disabilities into educational contexts. Both fields, however, share a core ideal that people with disabilities should have equal access to all "facilities and practices" as mentioned in the ADA, including unfettered access to college classrooms and education.
Yet, because these fields evolved from different points and with different purposes, the fields and their professional participants continue to live parallel professional lives on shared campuses. These parallel working worlds include separate professional journals and annual conferences, two of the current impediments to greater collaborative efforts. Consider that given limited resources of time, energy, and money, a professional is most likely to spend their resources on the conference and publication most closely aligned with his/her career. So far very few professionals have careers which allow a foot in each field.
I would also argue that each field has developed a different theoretical orientation, for while Disability Services remains largely focused on the practices involved in providing services, Disability Studies remains largely focused on the meta concerns of policies and social structures. In what follows we will consider an example from each field's professional journal; respectively The Journal of Postsecondary Education and Disability (JPED) and Disability Studies Quarterly (DSQ) which will show how this difference in focus influence the kinds of questions/concerns that are raised in each field. By looking at a specific example from each field's viewpoint we can then consider how implementation of the ADA on campus and in larger society might be impacted if there were collaborative projects developed between the fields.
Sharing Ideas from Journals and Viewpoints
The field of Disability Services has active research being done in order to identify best practices for supporting the success of students with disabilities. In Vol 27.1 of the Journal of Postsecondary Education and Disability (JPED) for example, there are articles which provide data to show the importance of academic supports including personal coaches (Richman), learning to use college infrastructure (Longtin), and using metacognition to teach students with LD and ADHD (Mytkowicz). These articles are obviously aimed at practitioners within the Disability Services field. In "Assessing Metacognition as a Learning Outcome in a Postsecondary Strategic Learning Course," for example, Mytkowicz notes, "This study's findings can be helpful to practitioners in the postsecondary LD support field" (69). Elsewhere in the article though it is also pointed out that:
Kincannon and others (1999) determined that embedding metacognitive instruction within course content can improve student awareness and application of learning strategies and contribute to course mastery (70).
This article also uses research to show that the graduation rate for students with LD and ADHD is about half of that for other students. Considering how many hours Disability Studies practitioners spend teaching, how can research such as this potentially impact teaching strategies in the classroom? Are Disability Studies classes universally using metacognitive strategies to support the learning of students with disabilities within the classroom? Given the focus on research in the Disability Services field on practices, it appears that such research could raise some very interesting conversations with the Studies field about teaching actions which support the learning goals of students with disabilities, particularly in classrooms where the content has a disability focus. Of course, Disability Studies practitioners already tend to promote Universal Design, however, UD has room to be guided by insights gained from a field focused on practices that support students with disabilities.
Similarly, the meta focus of Disability Studies raises potential dialogues with the more practice focused Services field. I think for example of Issue 34.2 of DSQ which included discussions of education and women's mental health (Dalke), the impact on politically displaced people with disabilities when we in stable nations "normalize" disability (Soldatic), and a thoughtful analysis of some of the complications of being non-disabled allies in the field (Erevelles). Erevelles' "Thinking with Disability Studies" would certainly be a good starting point for a conversation with colleagues in the Services field: What are some of the complexities a non-disabled person should keep in mind when speaking/acting on behalf of people with disabilities? When and how is this a useful tension?
One goal of dialogue between the fields then, would simply be to shift each other's point of view from time to time, to bring new nuances to the questions we ask within our fields. This is a starting place. I would suggest though that our larger goal should be to intentionally form coalitions with specific shared advocacy projects. Consider for example if we take the insights from JPED about the sort of teaching practices which best support learners with disabilities and together we advocated for changes to pedagogy within our departments and teaching centers on campus. I have worked with colleagues for example, who would not consider themselves part of the Disability Studies field, yet are interested in implementing Universal Design in their classes; they find limited value in UD theory and would like some very specific practices and tips for implementing UD in their specific class.
Imagine then that specialists within the Studies field made more of a point of sharing UD applications for particular topics/levels of classes. Imagine if professionals from both Disability Studies and Disability Services were working together and more deliberately with the on-campus center for Continuing Education/Professional Development with the shared goal of modifying pedagogical methods to be supportive of a broader range of learners.
Now imagine that both fields work together with the shared goal of advising campus administration about the growing number of people with disabilities who will be entering college in the years ahead and how we ought to be planning now for a future that will include a broader range of learners; learners who will increasingly require more one-on-one support if we are to maintain even current retention levels; learners who will place more demands on faculty and staff for a larger range of support services. How can we together engage our departments in productive discussions regarding the misconceptions which continue to surround particular groups of people such as those with mental health disabilities; can our united voices better educate colleagues about the privilege that continues to inform bias against accommodating certain types of disabilities, or providing particular supports?
These are preliminary ideas that are meant to suggest the potential of coalitions with specific goals, which can be formed between the fields. We have thus begun to answer the questions we began with. What does each field and the practitioners in each specialization have to gain from more deliberate intersection between the fields? Each field would benefit from insights that come from a point of view which is predominantly different between fields. Specialists within each field similarly benefit, as well as gaining allies on campus with whom we can form coalitions which would allow us to use our shared voices to advocate for specific goals and actions. This in turn could have significant impact on how the ADA is implemented on campus.
Coalitions in Favor of Accessibility
No two fields are more interested in enacting the goals of accessibility than are the fields of Disability Studies and Disability Services. In the 1960's social activism on campus carried out into the wider community and I would argue that while much of our work educating about what accessibility really means and looks like begins on campus, that work carries out into the wider community surrounding our institutions. How the spirit of the ADA is often still not implemented both on and off campus is an issue which both fields can speak to more forcefully if they more intentionally speak with united voices. I would also suggest that to speak with united voices we will need to begin by choosing specific projects/topics/goals as targets for our cooperative efforts.
Each field knows for example, that there will be an increasing number of people with disabilities seeking an education in the future. Whether it be for quality of life, changing careers, or the simple fact that more people with disabilities are surviving the previously exclusionary practices which kept them from arriving at college, we know the number of students with disabilities will be increasing. How might the fields work together to both educate their campuses about this reality and to adjust "business as usual" regarding policies and procedures, in classrooms and administratively, to better prepare for this future?
Both fields have research which points out that people with mental health disabilities continue to be at a disadvantage educationally, particularly when the affected individual is also a woman, part of an underrepresented group, and/or lives with comorbid disabilities (Dalke; Grossman). Yet, the institutions that employ most practitioners in each field, continue to struggle with their responses to people with mental health disabilities. The National Alliance on Mental Illness tells us that more students with more complicated mental health issues are now on campus, yet due to the ongoing stigma of being 'mentally ill' many students are reluctant to even seek help(NAMI). Has either field begun to realize the advocating potential they have on behalf of people with mental health disabilities on or off campus? How much greater is the potential of collaborative efforts we could undertake, particularly when it comes to affecting the campus and community rhetoric surrounding mental health concerns?
It is natural that we as professionals have already developed sub-specializations within our fields so that some of us will find some specific topics more relevant than others. We have not begun to explore the potential however, of sharing our specialized interests across fields. There is also certainly room for our professional organizations to select specific topics on which to intentionally speak in favor of or in opposition to. Additionally we can explore joint committees which do address special topics.
Joint committees, shared projects, and deliberate cooperative efforts are not easy to enact, as all will require additional investments of resources by both fields and individuals. If however, our fields determine that these are goals worthy of our time and resources, then joint efforts immediately become more viable because they would carry professional value. Perhaps the greatest question in front of us now is just that; will we choose to prioritize collaborative efforts between Disability Studies and Disability Services and in doing so, further implementation of the goals of the ADA?
- Americans With Disabilities Act of 1990 (as amended P.L. 110 - 325). "ADA.gov." United States Department of Justice Civil Rights Division. Web.
- AHEAD,(2014). "About AHEAD." Association on Higher Education and Disability®. Web. — (2013). "Welcome from Conference Chairs."
- Bragg, R. A., & Wagner, M. K., (1968). "Can Deprivation be Justified?" Hospital and Community Psychiatry. 19.7, 53-54.
- Dalke, A., Mulloney, C., (2014). "On Being Transminded: Disabling Achievement, Enabling Exchange. Disabilities Studies Quarterly. 34.2, Web.
- Erevelles, Nirmala, (2014). "Thinking with Disability Studies." Disability Studies Quarterly. 34.2, Web.
- Grossman, Paul, (2009). "Foreword with a Challenge: Leading our Campuses Away From the Perfect Storm." Journal of Postsecondary Education and Disability. 22.1, 4-9.
- Horner, R.D., (1980). "The Effects of an Environmental "Enrichment" Program on the Behavior of Institutionalized Profoundly Retarded Children." Journal of Applied Behavior Analysis. 13.3, 473-491.
- Longtin, S.E., (2014). "Using the College Infrastructure to Support Students on the Autism Spectrum." Journal of Postsecondary Education and Disability. 27.1, 86-99.
- Mytokowicz, P., Goss, D., Steinburg, B., (2014). "Assessing Metacognition as a Learning Outcome in a Postsecondary Strategic Learning Course." Journal of Postsecondary Education and Disability. 27.1, 69-85.
- NAMI, (2014). "Learn About the Issue." National Alliance on Mental Illness. Web.
- Richam, E.L., Rademacher, K.N., Maitland, T.L., (2014). "Coaching and College Success." Journal of Postsecondary Education and Disability. 27.1, 43-68.
- Roberts, Edward V., (1980). "The Emergence of the Disabled Civil Rights Movement." Online Archive of California. Web.
- Soldatic, K., Grech, S., (2014). "Transnationalizing Disability Studies: Rights, Justice and Impairment." Disabilities Studies Quarterly. 34.2, Web.
- U.S. Department of Education."History: Twenty-Five Years of Progress in Educating Children With Disabilities Through IDEA." Special Education and Rehabilitation Services. Web.
The sections "Allan's Story" and "Disability Rights Movement and Disability Services" are used with permission from Disability Services and Disability Studies: History, Context and Social Impacts, Christy Oslund, Palgrave MacMillan (December, 2014).
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