A Keywords for Disability Studies Entry

Community is an undeniably key aspect of disability, especially when it comes to the development of identity and a sense of belonging. The term has a few different meanings, all of which are important when discussing disability. The New Oxford American Dictionary defines community generally, as “a group of people living in the same place or having a particular characteristic in common,” which can include anything from a neighborhood to any sort of institution or organization, official or not.¹This definition of community is more concrete, and more traditional—it’s the territorial and geographical notion we tend to think of when we think of community. But there’s another meaning of community that some may argue is more relevant, especially in disability studies.

A different sense of community refers to the psychological aspect of the word, which can be understood as “a feeling of fellowship with others, as a result of sharing common attitudes, interests, and goals.” ² David McMillan and David Chavis examine this concept in depth in “Sense of Community: A Definition and Theory;” they outline the four elements essential to a sense of community, which are membership, influence, reinforcement, and shared emotional connection. Membership, “the feeling of belonging or of sharing a sense of personal relatedness,” consists of defined boundaries determining membership, a common symbol system, emotional safety, personal investment, and a sense of belonging. The element of influence, described as “a sense of mattering, of making a difference to a group and of the group mattering to its members,” reveals that members are more attracted to a community in which they feel influential, and that conformity in a group conveys overall cohesiveness. Reinforcement, or “integration and fulfillment of needs,” is defined as “the feeling that members’ needs will be met by the resources received through their membership in the group.” The last component is shared emotional connection, which is “the commitment and belief that members have shared and will share history, common places, time together, and similar experiences.” ³. These various aspects of community that McMillan and Chavis studied have proven to be quite accurate in general, but especially with disability. The history of disability culture in the United States, particularly the Disability Rights Movement, exemplifies how such factors play into the development of community.

Disability has historically been linked with terms such as “abnormality,” “weakness,” “deformity,” “special,” “lunatic”—terms that describe an “other.” A common framework for thinking about disability has been searching for a root cause, and prior to the nineteenth century, explanations included possession or moral deficiency, among others. Toward the late nineteenth and twentieth century, the medical model became the standard for handling disabilities, and disability came to be understood as a temporary condition, in which one could not take care of himself, had to be “fixed,” and was “obligated to want to get well.”⁴ Throughout history, disability has consistently been seen as an issue that needed to be fixed. Examples of solutions to disability have comprised of exorcisms, eugenics, surgeries, institutionalization, exclusion through law, and so on.

Institutionalism is one prominent piece of disability history that is particularly relevant to the term “community.” In the context of disability, institutions refer to “physical residential structures established specifically to house, educate, and/or treat people with various kinds of disabilities” or to “structures and organizations that are not formed exclusively for people with disabilities but that have a significant impact on their lives (such as hospitals, almshouses, schools, and prisons).”⁵  Starting as early as the seventeenth century, people with disabilities were put away into institutions to be “treated” or taken care of, or simply based on “the belief that these individuals were a menace to society and should be prevented from reproducing.”⁶ People with different disabilities, mental and/or physical illnesses, and criminal behaviors were often all grouped together, and this led to people with disabilities being “stripped of their identities, rights, and humanity in various institutional settings,” as well as abused and further marginalized.⁷ Despite these tragedies, the shared experience of dehumanization and oppression led disabled individuals to form communities, or a sense of community; in this sense, such peer-to-peer communities act as a refuge from the failings of the institutional community. Some institutions created communities in a more positive way, though, typically through specialized care and treatment: the creation of residential schools for the deaf “allowed hearing-impaired individuals to become ‘a cultural and linguistic community.’”⁸ These ideas surrounding community formation within institutions relate to McMillan and Chavis’ element of shared emotional connection in their model of community; the seven features of this category are the contact hypothesis (“the more people interact, the more likely they are to become close”), quality of interaction, closure to events (if interactions have a fulfilled purpose, it leads to cohesiveness), the shared value event hypothesis (“the more important the shared event is to those involved, the greater the bond”), investment (boundary maintenance, intimacy, interpersonal emotional risk), the effect of honor and humiliation (“on attractiveness–or adverseness–of the community”), and spiritual bond.⁹. These points confirm the ways in which bonds form inside institutions, whether the environment is positive or negative.

The overall progression of attitudes around disability consistently showed a “multitude of damaging able-ist narratives that . . . [informed] public discourse about disability identity,” and that continue to affect the lives of disabled individuals today.¹⁰ Such attitudes have led to intense stigmatization and marginalization that eventually prompted the Disability Rights Movement in the 1960s and ’70s.¹¹ Disabled individuals came together to fight both symbolic obstacles and physical ones, to “further the integration and full inclusion of individuals with disabilities into the mainstream of American society,” and to gain full autonomy over their lives.¹² This grassroots movement also fought against the medical model of disability by replacing it with the social model, which defines disability as a result of environmental stigma and policies, which turn an impairment into a disability. The result of the movement’s efforts included changes on paper, such as laws that prohibited discrimination and that granted basic and necessary rights, as well as changes in spirit: Disabled individuals  earned pride instilled by their success, and an empowered consciousness and sense of identity. It is this difficult, complex history that shaped the disabled community, “[galvanized] a diverse and diffuse population of disabled people, and [helped] to forge what many have come to understand as disability identity.”¹³

Disabled communities don’t all look the same; the very idea of a disabled community is complicated by the broad range of disability identity and experience. While people with all forms of disabilities all deal with same marginalization, their lives may otherwise have very little in common with each other. The experience of someone with an intellectual disability differs from that of someone with a physical disability. An autistic child with wealthy, married parents will live a different life than an autistic child with poor, divorced parents. An adult with cerebral palsy living in a home will have a different experience that an adult with cerebral palsy living in a town where fer accessibility accommodations have been installed. Race, gender, sexuality, socioeconomic status, and more all uniquely shape the life of a disabled person. Nevertheless, these differences don’t dismiss the validity or the power of disabled communities in existence. Natalie Delgado, a disability scholar, is one example: when she was a child, she was teased and “‘tested’ for how much [she] could hear” by her peers.¹⁴. Thus she didn’t identify as deaf because it meant being different or abnormal from all the hearing people around her. It wasn’t until she began taking classes at Gallaudet, a university for the deaf, that she starting meeting other deaf people, and her life changed. She claims that at that moment, “being deaf no longer meant darkness. It meant Deaf pride, confidence, access and support.”¹⁵ She finally felt free to learn, to socialize, and to be happy. She ends her story about the journey to acceptance by stating that, for her, “being Deaf now means being part of a community and a culture that accepts and respects the Deaf identity and Deaf journey.”¹⁶

Alice Wexler and John Derby, authors of “Art in Institutions: The Emergence of (Disabled) Outsiders,” highlight a different example of disability. They write about art centers, specifically the House of Artists in Austria, the Creative Growth Art Center in Oakland, California, and the Grass Roots Art and Community Effort based in Hardwick, Vermont, that “offer the Arts as a means of communication, as well as . . .  assist disabled people in making smooth transitions into their communities.”¹⁷  These art education centers allow disabled individuals to express themselves and their experiences through art and to create bonds with other disabled artists. The key benefit of centers like this is that they help transform identities, from those constructed “according to medical misconceptions, institutionalization, and misrepresentation” and “from the narratives given . . . by experts,” to those reconstructed within disabled communities and art communities.¹⁸ The House of Artists, CGAC, and GRACE “actively encourage disabled artists to explore their own experiences as a means of strengthening their identity.”¹⁹

The term community, as set out  in McMillan’s definition, proves to be highly beneficial, especially to marginalized groups such as the disabled. For people who have historically been pushed aside, stripped of their humanity, and excluded from society, having a community or feeling a sense of community is everything. Community allows individuals to feel a sense of importance, to gain emotional and physical support, to develop a feeling of belonging. Natalie Delgado and the art centers that Alice Wexler and John Derby describe verify this. Regardless of the context, coming together with a group of individuals who share difficult experiences and who see each other as more than just a disability allows massive self-growth and acceptance. It allows disabled people to develop an identity, rather than just being an “other” that is a burden to society, and to be proud of that identity. It’s through individual communities that people with disabilities can fight against the historical abuse and promote the lives of the disabled community as a whole.

1. New Oxford American Dictionary Online, 3rd Edition, edited by Angus Stevenson and Christine A. Lindberg, s.v. “community,” accessed February 13, 2019, http://www.oxfordreference.com/view/10.1093/acref/9780195392883.001.0001/m_en_us1234849..
2. New Oxford American Dictionary, s.v. “community,” accessed February 13, 2019.
3. David W McMillan and David M. Chavis, “Article 1: Sense of Community: A Definition and Theory,” Dr. David McMillan, www.drdavidmcmillan.com/article-1/.
4. Jerry Alan Winter, “The Development of the Disability Rights Movement as a Social Problem Solver,” Disability Studies Quarterly 23, no. 1 (2003): 33–61, doi:10.18061/dsq.v23i1.399. dsq-sds.org/article/view/399/545.
5. Licia Carlson, “Institutions,” in Keywords for Disability Studies, edited by Rachel Adams et al. (New York: New York University Press, 2015), 109.
6. Carlson, “Institutions,” 110.
7. Carlson, 111.
8. Douglas Baynton, qtd in Carlson, “Institutions, 112.
9. David W McMillan and David M. Chavis, “Article 1: Sense of Community: A Definition and Theory,” Dr. David McMillan, www.drdavidmcmillan.com/article-1/.
10. Julia Miele Rodas, “Identity,” in Keywords for Disability Studies, edited by Rachel Adams et al. (New York: New York University Press, 2015), 104.
11. Winter, “The Development of the Disability Rights Movement as a Social Problem Solver.”
12. Winter, “The Development of the Disability Rights Movement as a Social Problem Solver.”
13. Rodas, “Identity,” 103.
14. Natalie Delgado, “I Didn’t Identify As Deaf Until I Was 18. Then Everything Changed For Me,” The Huffington Post, June 21 2018, www.huffingtonpost.com/entry/i-didnt-identify-as-deaf-until-i-was-18-then-everything-changed-for-me_us_5b2a6638e4b0a4dc992303ea.
15. Delgado, “I Didn’t Identify As Deaf Until I Was 18.”
16. Delgado, “I Didn’t Identify As Deaf Until I Was 18.”
17. Alice Wexler and John Derby. “Art in Institutions: The Emergence of (Disabled) Outsiders.” Studies in Art Education, vol. 56, no. 2, 2015, 127.  doi:10.1080/00393541.2015.11518956.
18. Wexler and Derby, “Art in Institutions,” 132.
19. Wexler and Derby, “Art in Institutions, 138.