Wednesday, September 5, 2012

Disability as Identity, Not as a Problem

Disability as Identity, Not as a Problem
Kevin Fleming
Like most of us college students, every time I have an interview I hold certain information back. After all, a perspective employer does not want to know what we do on Saturday nights nor do they care about how annoying our roommates can be on cleaning day. But, unlike many college students, I not only hold back my little problems, I hold back something that is core to my learning strategies, my job performance, and to my very identity. I am dyslexic, and I cannot read beyond a full page of text without getting severe headaches and light blindness. Suffice it to say that it is not easy getting a job when your potential employer knows you cannot read. The problem here, however, is not my dyslexia but rather the stigmas surrounding my disabled identity. The problem is that when many disabled people go into an interview we do not have the social support necessary to feel comfortable with reeducating the system.
It is not easy to speak out when you are the lone voice in a world where your identity is viewed as a “deviance.” It is even harder to have a voice when most of the people in your community refuse to even identify as having a disability due to the stigmas surrounding their perceived ability status. For these reasons the disabled movement must grow stronger at Colorado State University (CSU). Disabled people must advocate not only for themselves but also the disabled community as a whole. People with disabilities do not want to be pitied, and they are not problems to be solved. The social needs of this population must be addressed in order to encourage disabled college students to form a positive sense of self, and to give them more confidence for when they enter the workforce.
Education and political efficacy: Students with disabilities at Colorado State University (CSU) have access to a large degree of support. Resources for Disabled Students (RDS), the disability advocacy center at CSU, offers a wide variety of accommodations for anywhere between 1,500 to 1,700 disabled students every year. However, RDS does not teach students how to be strong people, who are motivated for equality, and who identify positively with their disabilities. RDS does not teach students how to stand-up to an employer and demand access.
Equality and the philosophy of access are strong values within the RDS office, but due to limited resources the topic of “disability as an identity” is rarely discussed on campus. As an accommodations councilor at CSU, Karin Bright (2012), said, “The actual role [of RDS] is to provide equal access. Our mission is to make sure the university is in compliance with the Americans with Disabilities Act. (ADA), and to uphold the spirit of that law.” In other words, the emphasis of RDS is not on the social identity of disability so much as it is on the legal and technical aspects of the “accommodations model.” The accommodations model of disability holds that if only disabled people have accommodations they are equal to “normal” people. While accommodations are important for the individual success of students with disabilities they are only a limited part of the whole picture. The focus on the accommodations model is not on social agency but rather on “correcting” people’s disabilities through external means such as technology.
While it often does take a high level of individual agency to locate and learn how to use certain accommodations, most large organizations in the working world do not have an accommodations office to enforce equal opportunity laws. In fact, under ADA (1990) employers are only required to provide “reasonable accommodations” to people with disabilities, and under subchapter I, section ten of the law employers are largely given the discretion to determine what the term “reasonable accommodation” actually means. A disabled person who feels like they were discriminated against would have to take a perspective employer to court and prove: 1) that he or she can perform the requirements of the position with the requested accommodation, 2) that the employer has the resources to accommodate that person, and 3) that the reason for being denied the job was based on their disability. Clearly the court system is not an accommodations office like RDS. Political efficacy is thus essential for people with disabilities.
As already discussed, RDS does not teach disabled students how to advocate for themselves on a social or political level. This problem reflects a concern discussed by disability activists, “although all universities and colleges of higher education now have a dedicated disability services unit, the rhetoric of support is rarely matched by the reality of provision” (Barnes 2007, 141). RDS is a “resource depot,” a place for people to get accommodations for their classes; it is not a student activist organization, nor is it even a support group for disabled students. But, they enforce the political rights of disabled students. This leaves a lot of power in the hands of RDS, making the counselors and administrators of RDS the political elites of student disability policy and activism at CSU. While this is not a bad thing for students at CSU in the short-term, in the long-term it leaves quite a gap in the political efficacy education of disabled students. As many activist groups have argued, “Members of minority groups must possess sufficient political efficacy and engagement to express clearly their political needs and interests; otherwise they must rely on elites to infer and respond to their political concerns” (Schur, Shields, & Schriner 2003, 120). Disabled students have a very limited voice at CSU, and when they graduate they often do not have the political efficacy to get what they need in the workforce.
Student Motivation: Unlike most other Advocacy Centers at CSU, RDS has not historically been associated with student-oriented service organizations. This is not the fault of RDS; it is mostly due to a lack of motivation by students to form such organizations. This problem is not unique to CSU. As disability researcher and activist Colin Barnes (2007) argues, “most disabled students [in higher education] are reluctant to adopt a disabled identity and only a small minority are aware of disability politics and the disabled people's movement” (142). There are many possible explanations to this phenomenon, some of which are unique to the institution of higher education in particular. As Barnes (2007) also argues, the university (as a social institution) has somewhat alienated the disabled movement in the past by putting too strong an emphasis on positivistic, third person forms of study (138). In other words, university scholars have focused too much on the cold-cut numbers and not enough on the actual life experiences of disabled people (Barnes 2007, 138). Subsequently disability is often taught and discussed in the classroom using the same impartial frames, if it is taught at all (Barnes 2007, 139). This might lead college students to view their disabled identities as merely a statistic— without cultural life value. This is unfortunate because service organizations are founded on life experiences. They are what pull people together under a common identity, not third person examinations or impartial assessments.
While the institution of higher education has its problems, the main reasons for the lack of college student interest in disability go much deeper. Some of these include characteristics about the identity itself:
        1)    Disabled people represent a scattered, non-geographical population, which means that there is no one place to find them. This causes isolation and a “disconnect” away from shared identity support.
         2)    The disabled identity includes an extremely diverse set of differing individual identities that are on a spectrum from colorblindness to full body paralysis. This causes there to be no, or little, solidarity in this community. In order to have a voice, disabled people have to learn about each other from each other.
         3)    Disabled students at CSU tend to be passive about their disabilities. This is because they have often grown accustomed to the support provided by RDS and do not realize the challenges they will face in the workforce.
         4)     Many people with disabilities remain undiagnosed, so they never have the chance to embrace their shared experiences with the disabled community.
         5)    Many people become disabled or are diagnosed later in life, and thus struggle with building an identity around their disabilities. The later in life a person is diagnosed or acquires a disability the less likely they are to identify positively with their disabilities. (Hahn & Belt 2004, 458-459).
         6)    People are socialized through a lifetime of interaction to have shame in their disabilities. They are taught to see their disabilities as “deficiencies,” as “deviances,” and as “problems to be solved” not identities to embrace. This can lead to the self-denial of a person’s disabled identity, especially if acquired later in life.
All of the characteristics listed above have to be addressed when discussing disability at CSU. However, a positive understanding of the self is important for anyone at any stage of life. For this reason, the most difficult yet important aspect to discuss is the shame, and subsequent denial, of the disabled identity.  
Solving Shame, and the Models of Disability: The main cause of this shame is society’s insistence on treating people under the “medical model” of disability. People who take the medical model approach view disability as a problem to be cured. This can have profoundly negative effects on how people identify with their disabilities. In reaction to this model disability activists argue the “social model” of disability. Proponents of the social model look at disability as a valuable identity much like race, gender, ethnicity, sexual orientation etc. They hold that people are only called disabled in relation to people who do not have physical, cognitive, or mental differences. In other words, disability is a social construct rather than a deviance from the norm. Disability is thus not something to be cured but rather an identity to embrace.
In his article “One Principle and Three Fallacies of Disability Studies,” John Harris (2001), a moral philosopher in the field of medical ethics, argues from the medical model perspective towards disability. Harris (2001) argues that people with disabilities are morally equal to everyone else, but that given the opportunity medical professionals have the obligation to always amend or prevent disabilities from occurring in society (384-385). Say, for example, that a man comes into the hospital with his hand half severed. Say the hospital staff has the ability to save this man’s hand but they decide not to. This would clearly cause the man harm; the medical staff indeed has an obligation to reattach his hand. In this case the process of disablement would be harmful to the person affected. The loss of the hand is indeed a “problem” in this setting. However, Harris’s argument is critically limited. Harris (and the medical model more generally) only looks at disability in terms of the process of disablement, not the process of identity building.
People construct their entire lives around what they can and cannot do; their identities, their life experiences, their whole world perspectives are built around their ability statuses. It is true that if this man loses his hand it would be harmful to him. However, beyond the physical pain of losing his hand the harm would not be in the loss of his hand itself. The harm would be that his identity as a person with two hands would be lost. His entire life would have to change. He would suddenly be forced to adopt a different identity, an entirely new perception of himself. Whether or not this reconfiguring of his identity is positive largely depends on how he has been socialized to view disability. If he takes a medical model approach he is not likely to readily embrace his new identity. He is more likely to see himself as a problem, as a deviance, and as a deficiency. To expect the man to like the fact that he just lost a hand the day after he lost it would be unreasonable, but if you asked the same man ten years later if he would like a cure you might get a different answer.
In their academic study called “Disability Identity and Attitudes Toward Cure in a Sample of Disabled Activists” Harold Hahn and Todd Belt (2004) examined the attitudes of disabled people towards a hypothetical “cure” for their disabilities. They found that those people who had stronger senses of communal attachment with the disabled population also had a more positive sense of personal identity with their disabilities. These people were significantly less likely to agree to a cure (Hahn & Belt 2004, 453). This illustrates the importance of community activism and the promoting of the social models of disability. Framing disability under the social model approach can make for more positive, motivated, and outgoing people. The disability movement at CSU should thus use the social model of disability in framing their arguments.
Saying that a person who is disabled is actually “harmed” is a fallacy. Just because a person confined to a wheelchair may sometimes wish he could run does not mean he is necessarily harmed. After all, an otherwise able person may sometimes wish he could jump like an NBA basketball player, but that does not mean he is disabled (Koch 2001, 372). In this way we examine a fundamental flaw in the medical perspective of disability— disability itself is on a spectrum that is hard to define and only exists in relation to actual activities people do. These activities may or may not be purely social in nature, but they all have a social component, thus making the social model of disability relevant (Koch 2001, 372-373). Disabilities will never be completely eliminated from the human race. For these reasons, empowerment, not “cure,” should be the real goal of society. It is time we examined the positive aspects of our disabled identities. 
K-12 Socialization: The medical model of disability is pervasive throughout modern society, and it is especially apparent in K-12 education. A link off of the medical model is the “curriculum model” of disability, which holds that if only teachers can find the right way to teach disabled people their disabled students will become “normal,” productive members of society. “Unfortunately, schools unwittingly reproduce an understanding of disability as "individual pathology." This is an understanding of disability warped by the shroud of shame, pity, and tragedy in which the disabled students' needs, deficits, and problems are wrapped-constructing the student's institutional identity” (Ware 2002, 152). While constructing strength-based curriculum might be advantageous to students with learning disabilities, the fact remains that the concept of “disability as identity” is yet again missing within the rhetoric. This is important to recognize because students often enter into college with the same mentalities and expectations with which they left high school.
Conclusion: By discussing the social models of disability the few yet growing number of disabled students at CSU can raise awareness and increase the political efficacy of this population. I have created the Ability Club, which is a student organization that works to address many of the issues outlined in this argument. This club aims to bring out the perspectives that exist within the diverse, yet somewhat hidden disability community. RDS and the Ability Club also teamed up to found CSU’s chapter of the Delta Alpha Pi International Honor Society, which is an honor society for disabled students. With these organizations we hope to reframe disability under the social model, thereby creating a more positive and socially close disabled community at CSU. This will lead to a higher level of political efficacy for disabled students at CSU, and for disabled graduates who will be seeking employment in the workforce.

Works Cited

Barnes C. (2007) Disability, higher education and the inclusive society, British Journal of Sociology of Education 28 (1) 135-145.

Bright K. (2012, Apr 20). Personal interview.

Hahn, H. D. & Belt T. L. (2004) Disability identity and attitudes toward cure in a sample of disabled activists, Journal of Health and Social Behavior, 45 (4), 453-464.

Harris J. (2001) One principle and three fallacies of disability studies, Journal of Medical Ethics 27 (6), 383-387.

Koch T. (2001) Disability and difference: balancing social and physical constructions, Journal of Medical Ethics 27 (6), 370-376.

Schur. L. Shields, T. & Schriner K. (2003) Can I make a difference? efficacy, employment, and disability. Political Psychology 24 (1), 119-149.

U.S. Department of Justice (2009, Jun 15). Subchapter 1—employment, Americans with Disabilities Act of 1990, as Amended.

Ware L. P.  (2002) A moral conversation on disability: risking the personal in educational contexts, Hypatia, 17 (3), 143-172.

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