School Administration, Multicultural Education, & Inclusion

Disability as Culture

Jericha Hopson

Introduction There is extensive research in relation to (Barnes & Mercer, 2001). The call for this racial identity. A healthy racial identity formation is reinforced by outrageous and Regardless of which perspective one has been shown to have positive effects blatantly discriminatory “Ugly Laws” in takes, the definitions and meanings of on physical health, such as lower levels of the United States, which have placed so- disability are wide and varied; it is best stress, anxiety, and suicidal ideation (Ai, cial restrictions on those whose physical defined by and with people with disabil- Aisenberg, Weiss, & Salazar, 2014). appearance might offend “normal” people ities. Disability can also be defined from This article attempts to articulate the (Gerber, 1996). a cultural framework (Gilson & Depoy, importance of disability identity, culture, According to the Americans With 2000). The cultural view of disability and acceptance while advocating for the Disabilities Act (ADA), a person with a presents the issue of disability from the inclusion of disability culture in the con- disability is a person perspective of group identity distinct versation about diversity. By extending from other groups who do not share the who, with or without reasonable modifi- the same concepts of cultural competency disability identity (Mackelprang & Sals- cations to rules, policies or practices, the that have been used for racec and ethnic- giver, 1996). Pride is taken in the “unique removal of architectural, communication, ity, cultural differences can be applied to talents and attributes of each individual,” or transportation barriers, or the provision disability culture. of auxiliary aids and services, meets the grounding the person with a “positive In the minority group model of disabil- essential eligibility requirements for the disability identity” (Brown, 1995). ity, people with disabilities may be viewed receipt of services of the participation in Fear of judgment, denial, embarrass- as a socially stigmatized minority group programs or activities provided by a public ment, and ignorance is one of the reasons entity. (Section 12111) subjected to stereotypes, prejudice, and persons with disabilities do not disclose, institutional barriers similar to those of discuss, or seek understanding of their Disability culture promotes a sense of an ethnic minority (Eddey & Robey, 2005). disabilities. These barriers stem from common identity and interests that unites The inclusion of those with disability as a a negative disability identity and the disabled people and helps to create and cultural group will open doors that have destructive stigmatization of disability sustain meanings, identities, and the con- previously been shut to a population that as a problem held by the larger society. sciousness that takes a political movement has come up against many closed doors. A well-developed identity allows individ- forward (Barns & Mercer, 2001). Steven E. Cultural groups are afforded respect and uals to have a better understanding of Brown (2003), cofounder of the Institute on position in society, which allows for a co- their strengths, weaknesses, and unique Disability Culture, described the culture of hesive community to develop. attributes (Marcia, 1966). disability as follows: When individuals are able to accept People with disabilities have forged a their disabilities, they have higher levels of Disability Culture group identity. We share a common his- self-esteem, better coping skills, higher goals, Awareness of the disabled population tory of oppression and a common bond of resilience. We generate art, music, and more motivation (Arnold-Oatley, 2005). has increased over the last few years, and literature, and other expressions of our has prompted a call for the formation lives and our culture, infused from our ex- of a disability culture, with the goal of perience of disability. Most importantly, Jericha Hopson is the Student Disabilities Services challenging the individualization and we are proud of ourselves as people with Coordinator for Tarleton State University, medicalization of disability, the essentialist disabilities. We claim our disabilities a member of the Texas A&M System, and determinist definitions of disability, with pride as part of our identity. . . . Stephenville, Texas. the idolization of “normalcy,” and negative We are who we are: we are people with © 2019 by Caddo Gap Press stereotyping and exclusion of the disabled disabilities. (pp. 80–81)

MULTICULTURAL EDUCATION 22 School Administration, Multicultural Education, & Inclusion

A disability culture movement can identity, where there are often others who extend disability stereotypes held by the foster disability pride, the discovery of share one’s race in close proximity and/or general public (Barnes & Mercer, 2001). shared experiences and rituals, and the direct family, for persons with disabilities Personal affirmation of disability establishment of values, goals, and iden- to interact with other people with disabil- promotes a feeling of social inclusion, to be tity. When a strong image is presented, ities, they typically face the challenge of recognized and treated like everyone else it motivates people to want to belong, seeking them out, placing the responsibil- within a group or society (Dunn & Burcaw, to be part of something that is powerful ity on the individual to find such persons 2013). Finding meaning and affirmation (Johnson, 2015). Cultural competence goes (Forber-Pratt & Zape, 2017). This can be entails searching for significance and beyond understanding the values, beliefs, particularly difficult for those not located positive attributes that can accompany and needs associated with age, gender, in a homogeneous society. disability, which can lead to personal ac- or racial, ethnic, or religious background Putnam (2005) has offered a few ceptance (Dunn & Burcaw, 2013). (Eddey & Robey, 2001). aspects as being pertinent to political Disability culture extends across every disability identity and disability activism: Social Justice other cultural boundary and can be found self-worth, pride, and awareness of dis- in every corner of the world and through- crimination. Putman also mentioned other Many people with disabilities, like oth- out history. Disability culture is one of the aspects, but these three seem to be the most er minorities, desire to achieve acceptance only cultures and protected populations applicable here. A sense of self-worth allows and inclusion in society (Li & Moore, 1998). that can be joined involuntarily, suddenly, people with disabilities to see themselves as For this to be accomplished, there needs to and unexpectedly. Anyone can have an possessing the same worth as nondisabled be a fundamental change in how society accident and suddenly no longer fit into individuals. Pride emboldens people with treats and perceives disability as a whole. the nondisabled world. disabilities not to deny or mask but to People with disabilities themselves have a Previously, the disabled world was “claim” (Hahn, 1997). vital role to play in changing the cultural seen as abstract and ambiguous. The tra- Finally, discrimination necessitates representation of disability. ditional psychological models of disability awareness and recognition of the fact that Courage is needed to recognize that focused on disability as a deficit to be fixed people with disabilities are frequently the there are challenges to being disabled but (Schulz, 2009), but there has been a call for recipients of biased, prejudiced, and unfair also positive things in which pride can be a move to a social model of disability that treatment on a daily basis (Chan, Livneh, taken. This recognition can change the way underscores the role of society in defining Pruett, Wang, & Zheng, 2009). nondisabled people make judgments about and perpetuating disability (APA, 2012). the lives of people with disabilities and truly challenge current representations of The social model of disability suggests Disability Acceptance that the stigma experienced by those with people with disabilities, taking charge of a disability renders them a socially mar- Acceptance of disability does not focus the way in which disability is defined and ginalized group (Olkin & Pledger, 2003). on the “preference of one’s own state over perceived (Morris, 1991). others” but the “conditions facilitating Lummis (1992) has suggested that acceptance of one’s disability as non-deval- “equality of opportunity makes sense in a Disability Identity uating” (Wright, 1960, p. 108). Acceptance society organized as a competitive game, in Disability is commonly perceived as is a process in which an individual can which there are winners and losers. What a misfortune that can lead to underesti- “seek satisfaction in activities that befit is equal is not the people, but the rules of mation of existing abilities and a global his/her own characteristics as a person the game” (p. 43). Who created these rules devaluation of the person (Dembo, Leviton, rather than those of an idolized normal and how can we change them? Is this not & Wright, 1975). In psychology, the term standard” (Wright, 1960, p. 134). a concept that can be applied to multi- identity is often used to refer to the self, Individual acceptance of disability ple unjust situations? Recognition that expressions of individuality, and the groups may spark the move toward social ac- disability is socially constructed through to which people belong. ceptance (Li & Moore, 1998). The value the societal and environmental obstacles Dunn and Burcaw (2013) have pos- shift needed for acceptance of disability that have been created will reinforce the ited that disability identity refers to the is dependent on a person’s ability to understanding and feeling that having a possession of a positive sense of self and change the way he or she thinks about disability is not a personal deficiency. connection to, and unity with, the disability his or her disability, moving from a A significant social movement is pos- community. An articulate disability identi- negative devaluing system to a system sible when there is a reconsideration of ty is believed to help individuals adapt to where retained values are emphasized the manner in which a specific group of disability, social stresses, and daily hassles (Dembo et al., 1975). Better acceptance people “looking at some misfortune, sees (Dunn & Burcaw, 2013). of disability increases a person’s belief it no longer as a misfortune warranting Those with visible disabilities may that he or she is considered a member charitable consideration but as an injustice be viewed by others differently due to of society, resulting in increased social which is intolerable to society” (Turner, appearance; similarly, people of color have confidence (Li & Moore, 1998). 1969, p. 391). observable differences resulting in the The degree to which an individual Any advocate for social justice can perception not of the individual but of the accepts his or her disability is directly attest to the fact that major change can person’s race (McEwen, 2003). Just as peo- related to the societal perceptions and be daunting and discouraging at times, ple of color face obstacles unique to their stigmatization of disability. There is a but the key is to continue to chip away at race, people with disabilities often come widespread presumption that negative cul- the ice until it is gone. We must also accept up against barriers unique to themselves tural and media stereotypes of disability that the change we want to see may not (Bentley-Townlin, 2002). Unlike racial and disabled people serve to reinforce and happen on a large scale in our lifetime, but

FALL 2019 23 School Administration, Multicultural Education, & Inclusion the work we do today will pave the way for References valorisation. In R. Thomson (Ed.), Freakery: additional work to be done in the future. Culture spectacles of the extraordinary body Ai, A. L., Aisenberg, E., Weiss, S. I., & Salazar, D. (pp. 38–53). New York, NY: New York Uni- (2014). Racial/ethnic identity and subjective versity Press. Conclusion and Discussion physical and mental health of Latino Ameri- Gilson, S. F. (1996). Students with disabili- cans: An asset within? American Journal of It has been almost 30 years since the ties: An increasing voice and presence on Community Psychology, 53(1–2). https://doi. college campuses. Journal of Vocational landmark signing of the Americans With org/10.1007/s10464-014-9635-5 Rehabilitation, 6, 263–272. https://doi. Disabilities Act (ADA), and as a nation, we Americans With Disabilities Act, Public Law org/10.1016/1052-2263(96)00191-2 have made great strides toward equality. 101-336 (1990). Hahn, H. D. (1997). An agenda for citizens with The ADA prohibits public entities from Arnold-Oatley, A. E. (2005). Students’ with disabilities: Pursuing identity and empower- isolating or separating people with dis- physical disabilities adaptation to university. ment. Journal of Vocational Rehabilitation, abilities or denying them the opportunity (Master’s thesis). York University, Toronto, 9(1), 31–37. https://doi.org/10.1016/S1052- Canada. 2263(97)00019-6 to participate in the programs that are Barnes, C., & Mercer, G. (2001). Disability offered to others. Johnson, M. (2015). Emotion and pride: The culture: Assimilation or inclusion? In L. search for a disability culture. Disability However, we still have a lot of work Albrecht, K. Seelman, & M. Bury (Eds.), Rag, 35(3), 4–10. to accomplish. While not a revolutionary Handbook of disability studies (pp. 515–534). Li, L., & Moore, D. (1998). Acceptance of dis- concept by any means, the inclusion of Thousand Oaks, CA: Sage. https://doi. ability and its correlates. Journal of Social disability in the world of culture and diver- org/10.4135/9781412976251.n22 Psychology, 138(1), 13–25. https://doi. sity shifts the perspective away from the Bentley-Townlin, T. (2002). Understanding uni- org/10.1080/00224549809600349 traditional medical model. When viewed versity students’ construction of their hidden Mackelprang, R. W., & Salsgiver, R. O. (1996). disability identity. Digital Dissertations, People with disabilities and social work: His- as a culture rather than a clinical catego- 63(11), 37–97. rization of individuals, disability can be torical and contemporary issues. Social Work, Brown, S. E. (2003). Movie stars and sensuous 41(1), 7–14. https://doi.org/10.1093/sw/41.1.7 an empowering part of one’s identity. The scars: Essays on the journey from disability Marcia, J. (1966). Development and validation ability to connect to a group of people who shame to disability pride. New York, NY: of ego-identity status. Journal of Personality may share similar thoughts, beliefs, and People With Disabilities Press. and Social Psychology, 3(5), 551–558. https:// experiences can be life altering, particular- Chan, F., Livneh, H., Pruett, S., Wang, C., & doi.org/10.1037/h0023281 ly for those who do not reside in a highly Zheng, L. X. (2009). Societal attitudes toward McEwen, M. K. (2003). New perspectives on diverse community. disability: Concepts, measurements, and in- identity development. In S. K. Komives, D. B. terventions. In F. Chan, E. Da Silva Cardoso, Woodard Jr. et al. (Eds.), Student services: The sense of belonging to anything & J. A. Chronister (Eds.), Understanding psy- can give renewed direction, hope, and A handbook for the profession (4th ed., pp. chosocial adjustment to chronic illness and 203–233). San Francisco, CA: Jossey-Bass. confidence in the future. The hallmark of disability: A handbook for evidenced-based Morris, J. (1991). Pride against prejudice. Lon- disability as culture is the network one practitioners in rehabilitation (pp. 333–367). don, UK: Women’s Press. builds by meeting other people with dis- New York, NY: Springer. Olkin, R., & Pledger, C. (2003). Can disability abilities, particularly similar disabilities, Dembo, T., Leviton, G. L., & Wright, B. A. (1975). studies and psychology join hands? Amer- and forming relationships that can help Adjustment to misfortune: A problem of ican Psychologist, 58, 296–304. https://doi. promote education, awareness, and accep- social-psychological rehabilitation. Rehabil- org/10.1037/0003-066X.58.4.296 itation Psychology, 22(1), 1–100. https://doi. Putnam, M. (2005). Conceptualizing disability: tance. The disability culture movement org/10.1037/h0090832 is growing every day and is becoming a Developing a framework for political dis- Dunn, D. S., & Burcaw, S. (2013a). Disability ability identity. Journal of Disability Policy powerful vehicle for change. identity: Exploring narrative accounts of Studies, 16, 188–198. https://doi.org/10.117 However, people with disabilities are disability. Rehabilitation Psychology, 58, 7/10442073050160030601 often left out when discussing cultural 148–157. https://doi.org/10.1037/a0031691 Turner, R. H. (1969). The theme of contemporary diversity or overlooked as an important Dunn, D., & Burcaw, S. (2013b). Thinking about social movements. British Journal of Sociol- cultural group—perhaps not intentionally, disability identity: Major themes of disability ogy, 20, 390–405. but yet it persists. In some institutions of identity are explored. Spotlight on Disabil- U.S. Department of Justice Civil Rights Division. ity Newsletter. Retrieved from https://www. (2015). ADA update: A primer for state and higher education, disability is often housed apa.org/pi/disability/resources/publications/ in a different administrative department local governments. Retrieved from https:// newsletter/2013/11/disability-identity.aspx www.ada.gov/regs2010/titleII 2010/title ii than diversity and inclusion. This sends Eddey, G. E., & Robey, K. L. (2005). Considering primer.html the message that disability does not belong the culture of disability in cultural compe- Wright, B. A. (1960). Physical disability: A psy- with diversity. tence education. Academic Medicine, 80, chological approach. New York, NY: Harper While I believe there should be an 706–712. https://doi.org/10.1097/00001888- and Row. https://doi.org/10.1037/10038-000 administrative aspect to disability ser- 200507000-00019 vices, I also strongly believe students with Forber-Pratt, A. J., & Zape, M. P. (2017). Dis- ability identity development model: Voices disabilities deserve their place. I hope that from the ADA-generation. Disability and disability can be a source of pride and can Health Journal, 10, 350–355. https://doi. be celebrated as a culture rather than as org/10.1016/j.dhjo.2016.12.013 something secondary, with a “caution” label Gerber, D. (1996). The careers of people exhibited affixed. in freak shows: The problem of volition and

MULTICULTURAL EDUCATION 24