The language used to talk about disability is constantly evolving, and this guide makes an effort to reflect the language choice of both established and emerging scholars & activists. We welcome any questions, thoughts or comments about this subject guide at research@chicagohistory.org. Please use "Disability Studies Guide" in the subject line.
This guide was created by Ariel Robinson, Research Center Page and MLIS graduate. We gratefully acknowledge feedback from W. A. Thomasson and other community members.
The material in CHM collections may contain offensive language or negative stereotypes reflecting the culture or language of a particular period or place. These items are presented as part of the historical record. The Chicago History Museum has an institution-wide initiative to critically consider the language used to describe people and materials, and we invite you to read more about our related projects.
The Chicago History Museum relies on subject headings authorized by the Library of Congress to organize its catalog records. This controlled vocabulary facilitates the uniform access and retrieval of items in libraries and archives worldwide. Researchers can search headings in CHM's online catalog ARCHIE either in the general keyword search, by limiting the "All Fields" to "Subject," or by using the Advanced Search.
In Library of Congress classification, the heading "Disability studies" refers to study and teaching about people with disabilities; it has the variant labels "People with disabilities--Study and teaching" and "Sociology of disability--Study and teaching". LC classifies institutions under the headings "Intellectual disability facilities", which subdivides geographically (e.g. "Intellectual disability facilities--United States"). CHM recognizes the limitations of these and other subject headings, noting that names and terms used may be inadequate or misleading. Furthermore, some headings are predicated on ableist and outdated assumptions that might contradict an individual’s sense of identity and/or a researcher’s intentions. While CHM librarians are working to mitigate harmful language, these Library of Congress subject headings currently provide a way to isolate records within ARCHIE.
Note: This list is not comprehensive, but meant instead as a suggested starting point.
*This is a CHM local heading, but it maps to the LCSH heading "Dwarfs (Persons)."
In addition to Library of Congress subject headings, searching ARCHIE through the general keyword or the advanced search function is useful when seeking to narrow a search. By searching terms not authorized by the Library of Congress, researchers can ensure they have conducted a more complete search.
General keyword search terms
These are some common keyword search terms that appear in ARCHIE. Content warning: some of these terms are historic and problematic but still useful for discovery because they are part of item titles and/or names of organizations and institutions. We include these because they are part of the history of this topic, and will still often be included in historic documents themselves in addition to title and organization names. For more information on the challenges associated with conducting research in the disability studies field, please consult this helpful guide from the University of California at Berkeley.
If you have suggestions for other search terms, please let us know (research@chicagohistory.org) and we will add them to our list. The list can be viewed as a separate web page.
The language used to describe disability varies, and it is important to acknowledge the numerous definitions and contexts for a given term. Some terms may be reclaimed by the disability community but not acceptable for non-members to use. It is also important to note that some scholars and activists separate 'impairment' and 'disability' as two different concepts, where impairment is the neurological or physical manifestation of their diagnosis and disability is the barrier to access created by the inaccessible design of places and systems and exclusion from society. We also avoid using phrases such as "wheelchair bound" or "confined" to a wheelchair, as we recognize that people who use wheelchairs or other mobility devices are not confined but freed by such devices. In this guide, we have used language preferred by people with disabilities, including activists and scholars.
Identity-first is used by some members of the disability community as a way of embracing their identity. An example of this would be someone who prefers to be called a Deaf person rather than a person who is Deaf. Advocates of person-first language argue that members of the disability community are people first and should not be defined by their disability. As stated earlier, language preference varies and it is always better to ask what the person prefers or if unable to ask, use the preferred language of the community.
ABLEISM: systematized discrimination, antagonism, or exclusion directed against disabled people based on the belief that "normal" ability is superior. Ableism involves both denying access to disabled people and exclusive attitudes of nondisabled persons.
CHRONIC ILLNESS: a long-term health condition that may not have a cure.
COMPLEX EMBODIMENT THEORY: Tobin Siebers was a disability studies scholar who developed the notion of complex embodiment. This theory proposes that the lived experiences of people with disabilities are varied, complex, and nuanced. Individuals experience disability in different ways and the community cannot be reduced to a single experience. In his 2010 article titled "Disability and the Theory of Complex Embodiment —For Identity Politics in a New Register,” Siebers writes, "Disability creates theories of embodiment more complex than the ideology of ability allows, and these many embodiments are each crucial to the understanding of humanity and its variations, whether physical, mental, social, or historical. The ultimate purpose of complex embodiment as theory is to give disabled people greater knowledge of and control over their bodies in situations where increased knowledge and control are possible."
DISABILITY: a physical, mental, cognitive, or developmental condition that interferes with, or limits a person's ability to engage in certain tasks or actions or participate in typical daily activities and interactions.
DISABLED: Someone who is impacted by a cognitive, physical, developmental, and/or mental condition.
SPOONS: A colloquial term used by some people with chronic illness, especially pain, to describe how much energy they have to spare for daily tasks or activities.
NEURODIVERSITY: the concept that differences in brain functioning within the human population are normal and that brain functioning that is not neurotypical should not be stigmatized.
Defining disability is complicated, as the legal definition of disability is not consistent across agencies or sources. The disability community places importance on self-identification. For example, some members of the Autistic and Deaf communities do not refer to themselves as being disabled at all. Some definitions from dictionaries often leave out the complexity or root of the state or attitude being defined. Definitions for ableism that focus solely on physical barriers and not behavior are one example. Disability can also at any stage of life- birth, after an illness/accident, or with aging. Insurance companies, state agencies, and even individuals have different definitions for disability.
Barnard Center for Research on Women. (2017, May 9). My Body Doesn't Oppress Me, Society Does [Video]. YouTube. https://youtu.be/7r0MiGWQY2g.
Callahan, M. (2018, July 12). Unpacking the debate over person-first vs. identity-first language in the autism community. https://news.northeastern.edu/2018/07/12/unpacking-the-debate-over-person-first-vs-identity-first-language-in-the-autism-community/.
Ferrigon, Phillip. (2019). Person-First Language vs. Identity-First Language: An examination of the gains and drawbacks of Disability Language in society. Journal of Teaching Disability Studies. https://jtds.commons.gc.cuny.edu/person-first-language-vs-identity-first-language-an-examination-of-the-gains-and-drawbacks-of-disability-language-in-society
Identity-first vs person-first language. People with Disability Australia. (n.d.). https://pwd.org.au/resources/disability-info/language-guide/identity-vs-person/#:~:text=Many%20people%20with%20disability%20also,person's%20embrace%20of%20their%20identity.
MedLine Plus. (2018, August 4). Living with a chronic illness-reaching out to others. MedLine Plus.gov. https://medlineplus.gov/ency/patientinstructions/000602.htm.
Merriam-Webster. (n.d.). Disability. In Merriam-Webster.com dictionary. Retrieved December 2020, from https://www.merriam-webster.com/dictionary/disability.
Merriam-Webster. (n.d.). Neurodiversity. In Merriam-Webster.com dictionary. Retrieved March 2021. https://www.merriam-webster.com/dictionary/neurodiversity
Miserandino, C. (2003). The Spoon Theory. But You Don't Look Sick. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Northern Officers Group. (1999). Defining Impairment and Disability. University of Leeds Center for Disability Studies. https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/Northern-Officers-Group-defining-impairment-and-disability.pdf
Project LETS is a national grassroots organization and movement led by and for folks with lived experience of mental illness/madness, Disability, trauma, & neurodivergence. The organization specializes in building just, responsive, and transformative peer support collectives and community mental health care structures that do not depend on state-sanctioned systems that trap folks in the medical/prison-industrial complex.
Siebers, Tobin. (2010). Disability and the Theory of Complex Embodiment —For Identity Politics in a New Register. In L. J. Davis (Ed.), The Disability Studies Reader. (3rd ed.) London and New York: Routledge.
Simmons University Library. (2021, March 16). Anti-ableism. LibGuides: Anti-Oppression. https://simmons.libguides.com/anti-oppression.
What a Body Can Do. 26 Oct.-16 Dec. 2012, Haverford College, Haverford, Pennsylvania. https://exhibits.haverford.edu/whatcanabodydo/
The exhibition What Can a Body Do? explored the idea of disability through that very question: What can a disabled body do? What does it mean to inscribe a contemporary work of art with the experiences of disability? How can perceptions of the disabled body be liberated from classifications such as “normal” and “pathological” that so limit our thinking? Curated by Amanda Cachia, the show featured the work of nine contemporary artists who invent and reframe disability across a range of media.