What “My Kind” Can Offer: The Pressing Need for (More) Disability Studies and Disabled Scholars in Education Research
by Dorothy Bossman - November 13, 2015
This piece is a reflection on my experiences with disability in education, first as a student, then as a teacher, and ultimately, as someone who became disabled, but it is also an argument for a significant change in the manner in which most educational institutions treat, represent, and serve individuals with disabilities. I suggest that including the perspectives of more researchers and teachers who are disabled into the wider education research community is one way to begin this transformation.
How do you manage a class in a wheelchair? the human resources director asked me frankly.
Over the last decade, multiple sclerosis has rendered me unable to walk unaided and my increasing disability now often finds me in need of assistance to do basic physical tasks. Because of this progression, I had to leave my secondary teaching job, and by fiat, disability became the focus of my dissertation and the center of a newly defined scholarly career. My increasing marginalization demonstrated to me that disability is the last frontier of unquestioned inferiority, a situation that makes it extremely difficult to embrace disabled people and to recognize their unnecessary and violent exclusion from society (Siebers, 2008, p. 6). When I was able-bodied, I was oblivious to this abuse.
Nancy Mairs, another writer with multiple sclerosis, suggests that if it is both possible and pleasant for me and my kind to enter, the world will become a livelier place (1997, p. 106) and I think she is right. My nuanced perspective has enriched my intellectual life, but it has also made me aware of the misunderstandings of disability that are ubiquitous in educational circles. The insight I have gained is not just that a better understanding of disability will improve and enliven school for everyone; my kind is not well represented here. As a teacher and as a scholar of education who also became someone with disabilities, I believe that I must share what I have learned from this transformation.
Chief Justice Earl Warren in the Brown v. Board decision (1954) declared the school to be a principal instrument in awakening the child to cultural values. In their immediate surroundings, students may never have encountered someone who speaks a different language, someone who practices an unfamiliar religion, or someone with a disability. When students meet at school, it often results in a painful, critical, re-examination of their active ignorance about difference (Mayo, 2004) and teachers find themselves engaged in mediation between individuals who are struggling to relate to one another. All students, able and disabled, observe these interactions and learn how to react to difference.
For many disabled individuals, their invisibility, exclusion, and inability to fit in were first made most apparent at school. In my elementary years, the physically and mentally disabled students were, for the most part, kept away from the rest of us. If we saw these individuals at all, it was only as they passed our classroom or left the cafeteria when we arrived. One afternoon in second grade, I remember looking out into the hall at the sound of squeaking walkers, buzzing wheelchairs, and inarticulate speech only to be reminded that I was not to stare. In secondary school, the visibility of disabled students increased slightly when a few would join us for assemblies and occasional gym and music classes. Still, these events were irregular, and the inclusion of this group was treated as something special, a coming together that was carefully facilitated by adults. What cultural values did this treatment of disability awaken in us?
This systematic division of students demonstrated that those who have disabilities were different, fragile, dangerous, and generally unapproachable. What if my teachers had treated those with disabilities as something other than distant, helpless cases that one is not to look at or insult? What if I had known a disabled studentor teacherto be competent, thoughtful, or at least multidimensional? I did not. Instead, my experiences with disability at school were governed by a tacit ideology of ability (Siebers, 2008) that takes for granted that those with disabilities should be kept at a distance, that they are best served when they are isolated, and that they need to be protected from the fray of public life.
When I trained to be a teacher, I had one class that surveyed different disabilities and offered an understanding of the legal rights of students who receive special education. Beyond that requirement, my experiences matched the observation that the study of disability is isolated in the specialized applied fields (e.g., special education, rehabilitation psychology, physical therapy), and that information is usually available only to majors in those fields (Linton, 1998, p. 80). When I worked in schools, I found that students with disabilities were still often separated from those without this identification. Even when such students were enrolled in my regular English classes, each came with an individual educational planwith specific accommodations he or she required. However, when a student with disabilities joined a general education class, this inclusion was contingent on his or her ability to fit in, to act enough like the non-disabled students that instruction did not have to change dramatically.
If a student with a disability needed more than this accommodation, he or she would be moved to a co-taught section, which meant that for a period, my class included a special education teacher who brought with him or her a group of students, the same young people this person chaperoned to other classes. While I did my best to include all students equally, those with disabilities generally arrived together and acted as a social unit. Their separation was also frequently made apparent when the special education teacher removed only some of the class for remediation or to read materials aloud. If this situation was unsuccessfulusually meaning that a student frequently disrupted classthe problematic individual was moved to a more isolated setting. Once this move occurred, the student was no longer mine. I had done my best, but I had learned that this student was better left to the specialists.
Lessons about disability are also found in the academic curriculum, which often promotes problematic or distorted portrayals. In history, one particular favorite tale is someone who can overcome the odds, the inspirational disabled person. The person with polio who later won Olympic medals for track, the one-armed pitcher who threw a no-hitter, or the blind pianist were all so good that no one knew or had to be aware of their handicap, and therein lay part of their glory (Zola, 1983, p. 201). The rest of the world does not have to change; thus, true greatness for a disabled person is succeeding without accommodation. This moral is harmful for those individuals who do need help, but the portrayals of disability in fiction often teach a more dangerous lesson.
A popular character in literature is the evil disabled person for whom physical handicaps are made the emblems of evil (Longmore, 2003, p. 133). For nefarious individualslike the one-handed Captain Hook (Barrie, 1980) or Count Rugen, the six-fingered man in The Princess Bride (Goldman, 1998)their physical deformity is central in their characterization. Another unflattering depiction is the disabled person as a social misfit, which, like deformity [expresses] to varying degrees the loss of an essential part of ones humanity (Longmore, 2003, p. 135). For example, Lenny in Of Mice and Men (Steinbeck, 1963) and Quasimodo from The Hunchback of Notre Dame (Hugo, 2002) are characters that elicit sympathy, but ultimately cannot be included in mainstream society.
Fiction and nonfiction stories often leave disability with tropes at opposite ends of a spectrumthe tenaciously brave or the sad and gruesome: a spectrum without a middle. Rather than portray these individuals as real people who have conflicts, goals, failures, losses, and joys (like everyone), many stories depict those with disabilities as exaggerated, distant people who exist to remind the non-disabled that they should not take for granted how great they have it. These examples of disability might be fictional or historical, but by dividing the disabled students from the able-bodied, the institutional arrangements of many schools support these misconceptions. Educational leaders espouse respect for those with disabilities, but the hidden curriculum, the stronger message, is that children in special education are different, incompetent, and unsavory, and, because of their isolation, easily avoidable (Linton, 1998, p. 63). Once someone who is able-bodied becomes disabled or begins a path to disability, the options for living narrow into the misrepresentations he or she has acquired. As a result, the individual enters the new terrain of disability poorly prepared and with all the prejudices of the normal (Zola, 1983, p. 206), wondering whether he or she will be a hero or a monster.
If the larger milieu of education included more voices of thinkers who are themselves disabled, the chimera of inclusion could be replaced by solutions that are applicable to general classrooms. Teachers would be better prepared to disrupt and question the segregation of disabled students if they had colleagues who were themselves disabled. Also, if more teachers (and teachers of teachers) were disabled, the separation of students based on a bifurcated system of abled or disabled would become less obvious and less appealing. I was a good teacher when I was able-bodied, but I know now my teaching was not good for all students. Because my training did not include a focus on special education, I left the education of those students to a different set of teachers. I did not question the segregated cafeteria, the private hallways, the separate buses, the isolated special education courses, or the systematic distancing of disabled students from regular students. Now I do. What knowledge, other than that I gained from my personal illness and disability, could have brought me to this conclusion sooner?
If I had actually known individualspeers or teacherswith disabilities to be talented, successful, or content with their lives, I could have been less afraid to lose my mobility. If I had been familiar with disability scholars, their work could have introduced contradiction into the polarized categories of weak and strong, normal and abnormal, revered and reviled, dependent and independent, expendable and essential (Linton, 1998, p. 186). Even without becoming disabled, I could have had been a part of the necessary act of dismantling the consistent distortion, marginalization, and segregation of disability. By including and appreciating the uniqueness of those who have disabilities, schools could tell better stories about disability and display a clearer picture of reality. My kindif one label can encompass all of uscould bring into focus the problems these divisions create for all of us.
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