Disability and Disability Culture

by

Romel W. Mackelprang, Ryan Parrey

• LAST REVIEWED: 25 October 2017
• LAST MODIFIED: 25 October 2017
• DOI: 10.1093/obo/9780195389678-0255

Introduction

Social work has a rich history in working for the rights of people in society. The profession’s commitment to vulnerable and oppressed people and groups are codified in national and international ethical standards. Social justice and respecting the dignity and worth of people are core ethical principles. Social workers’ ethical responsibilities to clients include self-determination, cultural competence, and respect for diversity. Social workers have been at the forefront of social causes to improve the lives of individuals and groups as evidenced by the high regard that one of the profession’s founders, Jane Addams, a 1931 Nobel Peace Prize winner for her work on behalf of women, immigrants to the United States, peace activities, and involvement in the early years of the NAACP and ACLU. Addams’s work reflected her commitment to empowering diverse groups. She recognized that women, ethnic minorities, immigrants, and others were disadvantaged by society and not because of individual failings. Addams was an icon of human rights and valuing diversity, yet she was deeply ashamed of her disabilities. She deeply admired her father and recounts how she, “prayed with all my heart that the ugly, pigeon-toed little girl whose crooked back obliged her to walk with her head held very much to one side, would never be pointed out. . . as the daughter of this fine man,” lest she bring shame to him by his being associated with his “ugly duckling” daughter (Twenty years at hull house. Addams Publications, 1910. p. 3). Social work histories on Addams contain scant information and discussion about her disabilities. Had Addams lived today, she would have access to disabled role models and mentors within the disability community. And given her commitment to social justice, she would certainly be a disability rights advocate because she would have community and a context to operate in. This contribution to the social work body of literature elucidates a diversity approach to disability that includes disability pride, disability culture, and the contributions of disabled people in society. It builds on the literature such as the Oxford Bibliographies contribution of Rankin and colleagues (2015) in Social Work “Disabilities” that provides information for social workers to work with disabled people who are vulnerable and oppressed because of individual or social pathologies. It offers an alternative diversity-and-strengths-based definition of disability and disabled people in contrast to a “social problems” perspective. It provides resources in two broad-ranging areas of focus to help readers understand disability and disabled people as contributors to the diverse tapestry of society. The first entails academic and activist work in disability studies and the disability rights movement. The second includes cultural and artistic products constructed by disabled people that speak to disability as a socially organized phenomenon as well as a lived experience.

Disability Language

The definition of disability is continually evolving and has multiple and conflicting meanings contemporarily. The most common societal disability characterizations delineate people’s problems and pathologies such as when the government reports on lost work productivity or welfare program eligibility because of disability. This approach labels disability negatively. To mitigate this pathology-based approach, many professionals and people with disabilities adopted person-first language (e.g., person with a disability) in the late 20th century. Person-first language challenged the narrative that defined people by their disabilities by using language that emphasizes people’s humanity as persons first while acknowledging their disabilities as a characteristic. Person-first language is widely accepted in social work and human services. However, in recent decades, disability rights advocates and disability studies scholars have rejected the belief that disability is inherently negative or shameful and embraced disability as a diverse identity. Many embrace disability-first language (e.g., “disabled person” rather than “person with a disability”). They contend that person-first diversity language carries an implicit negative meaning (e.g., woman versus person with woman-ness, black person versus person with blackness, disabled person versus person with disability). This bibliography refines the multiple meanings of disability using multiple terms to organize explanations of the literature. It employs the term “impairment” to signify internal atypical traits such as blindness, deafness, mobility impairment, or cognitive impairment. For example, a leg amputation results in an impairment that affects mobility. The term “disability” is used to denote the interaction of people’s internal characteristics within their social worlds. For example, leg amputation does not affect an accountant’s ability to work at a job but may affect a construction worker’s job. The combination of external influences such as discrimination, architectural barriers, and high health costs and impairments result in disability. For example, a person with a seizure disorder has an impairment, but the reactions of others are often far more disabling than the impairment itself. Though person-first disability language was adopted to mitigate the damage caused by stereotyping, people with disabilities are increasingly embracing disability identity and identifying with disability culture. Disability-first language, using the uppercase D (as in “Disabled person”) has become increasingly popular within disability culture and among Disability activists. Some embrace formerly pejorative terms, such as calling themselves gimps, crips, and crazies. Disability-first language embraces the shared identity of Disabled persons, community, and culture (Mackelprang and Salsgiver 2015, Dunn and Andrews 2015). The following articles provide a sampling of people-first and disability-first arguments.

• ARC. 2016. What is people first language?

  The ARC is an organization serving people with intellectual and developmental disabilities and advocates for person-first language. This webpage provides a brief discussion of the reasons for this. It is typical of the intellectual disability community that primarily uses person-first language and rejects disability-first language.

• Brown, L. 2011. Autistic hoya: The significance of semantics: person-first language: Why it matters.

  Lydia Brown’s Autistic Hoya is an autism advocacy site. In this entry, she argues that autism is not inherently a problem and that person-first language not only denies her identity but also fails to recognize the value and diversity of autistic people.

• Dunn, D., and E. Andrews. 2015. Person-first and identity-first language: Developing psychologists’ cultural competence using disability language. American Psychologist 70.3: 255–264.

  DOI: 10.1037/a0038636

  Presents arguments for person-first and identity-first language and argues that psychologists should utilize identity-first language in conjunction with person-first language in a manner that promotes human dignity and display cultural competence.

• Mackelprang, R., and R. Salsgiver. 2015. Disability: A diversity model in human service practice. 3d ed. Chicago: Lyceum.

  Provides a history of disability and discusses the evolution of disability language including the emergence of disability-first language. The chapter outlines a history of disability language and its evolution over time, including the contemporary debate.

• Wood, C. 2014. Criptiques. San Bernardino, CA: May Day.

  This collection of essays compiled and edited by Wood explores disability identity and language along with themes associated with other diversities such as gender, identity, and crip culture. It frames disability as one diversity among many others. The title, Criptiques, is an example of embracing terminology that has been historically negative.