Disabilities

Overview

Disability is generally defined as including “physical, psychological, intellectual, and socioemotional impairments.” [1] Current studies have expanded this definition to include the intersectionality of feminist disability, which focuses on the biases experienced by women with disabilities, including ableism[2], racism, sexism, homophobia, and classism.[3] This intersectionality holds critical meaning for the archives and other public facing documents held by Schlesinger Library. Some of our legacy finding aids contain language which conflates identity with disabilities and uses terms that range from harmful stereotypes to valorization (See examples below).

In an effort to address these biases and the harmful language which reinforces negative stereotypes about people with disabilities, we seek to describe materials and their creators respectfully and equitably. The Americans with Disabilities Act (ADA) National Network has crafted a concise set of guidelines to use when writing about people with disabilities and generally recommends using person-first language (e.g. person who is blind).[4] However, the disability community is broad and diverse and some in the community prefer identity-first language (e.g. blind person), believing that person-first language not only separates them from an important part of their identity but also implies that their trait is negative. We recognize that individuals have different perspectives on this issue; some may or may not prefer person-first language, while others may not identify as disabled. 

According to the American Psychological Association Style Guide, “the language to use where disability is concerned is evolving. The overall principle for using disability language is to maintain the integrity (worth and dignity) of all individuals as human beings. Authors who write about disability are encouraged to use terms and descriptions that both honor and explain person-first and identity-first perspectives. Language should be selected with the understanding that the expressed preference of people with disabilities regarding identification supersedes matters of style.” 

Sara White, a community advocate, writer, and archivist at the University of Wisconsin-Madison, writes about the theory of complex embodiment. This theory suggests that disability is simply a form of human variation which can change depending on the social context. She describes how complex embodiment can be a more accurate way of documenting the multi-faceted experience of people with disabilities.[5]

Examples

In the past, the library has applied inconsistent descriptive practices related to people with disabilities. In an endeavor to apply more inclusive language to collections about people with disabilities, the manuscript department reviewed collection finding aids related to Helen Keller as part of their 2020-2021 department-wide effort and discussed the following questions: Does the Helen Keller description follow the ADA guidelines? What issues do you see with this description that might need to be rethought? What changes to the description would you suggest?

The Manuscripts Department decided that the Helen Keller legacy finding aids under-described the collection and would benefit from inclusion of the people-first language described in the ADA guidelines. Corrections were made to the abstract, biography, scope, and content, and select folder titles, removing condescending euphemisms that can perpetuate stereotypes. In 2001, the Library of Congress subject term "disabled" was replaced with the "People with disabilities." Schlesinger chose the narrower term: "Women with disabilities."

Project on Women and Disability Records documents efforts to inform "women with disabilities to demand their right to become equal and integrated members of their community" and as such uses people-first language throughout the finding aid.

Additional collections which need reparative work include the Linda J. Laubenstein Papers and the Naomi Weisstein Papers. Laubenstein was a physician and HIV/AIDS researcher who lived with severe asthma and the effects of childhood polio and used a wheelchair.  The biographical note in the finding aid indicates that she was "confined to a wheelchair." The term “confined” used to describe equipment which is generally considered liberating, perpetuates the stereotype of a disability being a burden. Laubenstein can be described as simply someone who uses a wheelchair. 

In the finding aid for the Naomi Weisstein Papers, Weisstein is described as a feminist, a pioneer in cognitive neuroscience, and a member of the Chicago Women's Liberation Rock Band who was diagnosed with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). The biographical note indicated that although she was bedridden she continued to work and write.  This description unnecessarily connects her physical situation with her intellectual work, implying that her efforts to continue working are heroic.

Recommendations

• Recognize that there are different ways that people with disabilities self-identify and that having a disability is a natural part of life.
• Be aware that disability is also not a static state and may be present only at specific periods in a person's life.
• In general, we recommend adopting description that adheres to person-first perspective. However, be mindful that language and preferences are constantly evolving so don't always default to a particular approach. And most importantly, the preference of the individual and how they want to be identified should take precedent.  
• Avoid language that unnecessarily implies that a person is courageous or heroic because of their disability.
• Similar to the various types of reparative work described throughout this guide, in instances where harmful language is retained, including the names of organizations, book titles, etc., we will provide contextual notes.

Resources 

American Psychological Association style guide

https://apastyle.apa.org/style-grammar-guidelines/bias-free-language/disability

Americans With Disabilities Act National Network. Guidelines for Writing About People with Disabilities. April 2020.    

White, Sara. “Crippling the Archives: Negotiating Notions of Disability in Appraisal and Arrangement and Description.” American Archivist, Vol. 75, No. 1 (Spring–Summer 2012): 109–24.  

“Reparative Description for Disability Collections: Using A New Model of Complex Embodiment at Harvard’s Houghton Library” Archival Outlook (November/December 2021)    

Disability Language Style Guide (National Center on Disability and Journalism)   

Virtual Disability History Museum.  If you click on the library collections page you can get a long list of keywords which may be helpful.  

ACE DisAbility Network. “The Language of Disability,” n.d. National Center on Disability and Journalism. “Disability Language Style Guide,” n.d.

"Writing Respectfully: Person-First and Identity-First Language" (National Institutes of Health)

Notes

[1] American Psychological Association style guide: https://apastyle.apa.org/style-grammar-guidelines/bias-free-language/disability

[2] The term ableist describes society’s favorable view of able-bodied people in contrast to the outdated, offensive, inaccurate, or inhumane terms used to describe physical, mental disabilities, or other physical and health issues.

[3] Grace Brilmyer. Why Disability Studies for Archives? UCLA College, Center for the Study of Women, July 13, 2018: https://csw.ucla.edu/2018/07/13/why-disability-studies-for-archives/

[4] Americans With Disabilities Act National Network. Guidelines for Writing About People with Disabilities. April 2020. 

[5] White, Sara. “Crippling the Archives: Negotiating Notions of Disability in Appraisal and Arrangement and Description.” American Archivist, Vol. 75, No. 1 (Spring–Summer 2012): 109–24.