Best Practices for Describing Disability in Collections

Owned by Betts Coup
Last updated: Jul 06, 2022 by Annalisa
14 min read

By: Annalisa Moretti, as part of the Year of Professional Engagement, 2021-2022

Introduction


Our collections contain a good deal of material created by and about disabled people, including disabled performers (1) whose work and experiences are documented in the Harvard Theatre Collection. Many of these materials were created in a time where disabled people were exploited, discriminated against, and treated as objects for entertainment, amusement, and horror. While some performers had some level of control over their careers and took pride in it, some were coerced or even owned by their managers, and with many others we cannot know their feelings on their profession and reputation. 

Though attitudes towards disability have evolved and the disability rights movement has made huge strides, discrimination against people with disabilities still exists, sometimes in overt ways, but also embedded into the world around us, including in the language we use to describe the disabled community, as well in the way we design our buildings, structure our days, and record our history.

These guidelines are intended to assist archivists in describing disability and disabled people in collections in an accurate, respectful, and transparent way, which preserves the context of their individual experiences, time period, place, while restoring dignity to them and reducing harm to researchers. Because our collection has many examples of records relating to disabled performers, these guidelines often use them as examples, but they are intended to be general guidelines for use in other types of collections as well. 

We can improve our description by:

  1. referring to disabled people by their given names;
  2. giving careful thought to the language we use to describe disabled people and their medical conditions;
  3. including disabled people and the disability community in the research that supports our description;
  4. writing notes that give context to the materials, their history, and the creators and subjects of the collections; and 
  5. being transparent about archival processing decisions.

Identifying Individuals in Collections

Whenever possible, it is important to identify individuals in our collections by their full names, rather than nicknames, stage names, or pseudonyms, particularly if those names were given by others and not chosen by the disabled individuals themselves. Alternative names may be given alongside real names in parentheses, particularly if that is the name they were best known by in life. If another name is the authorized form of their name in the Library of Congress, discretion on the part of the archivist or department policy on adherence to authorized forms should be used. In some cases, individuals may prefer names other than their birth names. Participatory appraisal with the creator or subject, or with experts on their life, may be necessary to conclude the appropriate name to use. 

In cases where another name is preferred, or the individual’s true name is lost or undiscoverable, a note may be necessary to specify that the name comes from the materials, along with any necessary context about the origin of the name, particularly if it includes offensive terms.

Locating the Names of Subjects and Creators


The best way to start is a simple Google search. Look for sources that are reliable: articles, encyclopedia articles (including Wikipedia), book summaries and abstracts, finding aids and catalog records from other institutions, vendor catalogs. Blogs may be acceptable, though you should check their sources.

If a possible name is discovered, try searching using that name as well to see if any further information is available. 

Biographical resources


American National Biography Online

World Biographical Information System Online

Oxford Dictionary of National Biography

Harvard’s guide to researching biographical information

Disability Language Style Guide


This is a brief guide for preferred language to describe some disabilities and medical conditions. This guide should be updated periodically to ensure that, as much as possible, it’s in keeping with community preferences. Also, when possible, any living individuals should be described using the terms they prefer. If there is confusion or debate about what terms to use and the subjects are not alive or available for consultation, consider reaching out to organizations, specialists, or advocates for the relevant medical conditions (more about this under “Participatory Appraisal”).

In all cases, when referring to harmful terms that appear in the collection materials themselves, make it clear that is where it originates from by employing quotation marks, citations, and using contextual notes (described in detail later). 

Vague or euphemistic terms


abnormal/abnormality

Avoid using when describing a person, their body, or their behavior. Instead, describe specific disability, condition, or injury if known, or use “atypical”.

afflicted with/stricken by/suffers from/victim of

Passive voice which makes a judgment about the subject’s quality of life or opinion on their condition. Simply state the disability, condition, illness, or injury as something they have.

curiosity

Use name of condition or speak more broadly of “disability”, “disabled people”, or “person/people with disabilities”.

cripple(d)/crip

Only use when quoting from material, names of organizations, titles, etc. or when referring to disability movements that use the term “crip”. Instead, use specific diagnosis or “disability”.

defect/defective, deformed, disfigured

Like abnormal, don’t use when describing a person or their body (including “birth defect”). Use diagnosis or “disability”.

freak

Use “performers” (or “disabled performers”, “sideshow”, “circus”, “troupe”, or other terms. If it seems impossible to use anything other than “freak show” make sure that it is clear, by use of notes if needed, that this is a historical term.

handicapped

While this was a widely used term, many disabled people find it offensive because of the literal meaning of the word (an impediment). Use “disabled” or, when using it as an adjective, “accessible” might be more appropriate.

invalid

Use “disabled”, “chronically ill”, or better yet, the specific medical condition or disability.

lame

Use “disabled” or the specific condition or injury.

wheelchair-bound/confined to a wheelchair

While commonly used, these terms imply that assistive devices are limiting instead of something which enables disabled people to navigate the world on their own and participate in society. Use “wheelchair user” instead.

Physical conditions


albino

Some people prefer “people with albinism”, others prefer “albino”. Use the former as default unless instructed otherwise by the subject. (2)

blind/vision impaired

“Blind” is accepted, as is “legally blind”. “Low vision” is commonly used for people with some vision loss. “Visually/vision impaired” is not universally accepted by people in the blind community. (3)

cretin/cretinism

“Cretin” is commonly used as a slur. When it was historically used in a medical sense it referred to people with severe hypothyroidism. Investigate to see if this is what the term is referring to in the material. 

deaf/deafblind/deaf-mute/deaf and dumb/hearing impaired

“Deaf” and “deafblind are both commonly used. Some people in the Deaf community use a capital “D” to refer to Deaf culture and the Deaf Community. “Hard of hearing” is also commonly used. “Hearing impaired” is not accepted by the Deaf community and should be avoided when not present in quotations or titles. 

“Deaf-mute” (and “mute) and “deaf and dumb” should be avoided, because they imply that a deaf person is unable to communicate. Instead, state that a person is deaf and communicates using sign language (specific type if known), lip-reading, writing, or any other method. (4)

dwarf/midget/little person

The most commonly used terms are “dwarf” or “person with dwarfism” or “little person”. Do not use “midget” unless clearly citing it from material. You may also use a person’s specific medical condition (there are several) if known. (5)

giant/gigantism

People who were labelled as “giants” most often had a condition that is caused by the pituitary gland producing too much growth hormone, sometimes because of a tumor. This is commonly known today as gigantism or acromegaly. Another medical condition that people labelled “giants” might have is Marfan syndrome, a connective tissue disorder. Unless you know of a definite diagnosis, it might be best to refer to “giants” as “people with gigantism” for now. (6)

handicapped

Use “disabled” or “accessible”.

harelip

Should be referred to as a cleft palate. 

mongoloid/mongoloidism

Should be referred to as a person with Down Syndrome. 

Siamese twins/ “two-headed”

Conjoined twins.

spastic/spaz

A person with cerebral palsy. 

special needs/special education

Though still in use, common terminology is moving away from it because it is often used offensively, and because it verges on euphemism. Currently the best terms to use is just “disability” or “functional needs”.

vegetable

Refer to the person’s specific medical condition or as comatose.

Mental health and neurological conditions


asylum

Use “mental health hospital” or “psychiatric hospital” except in cases of names of institutions or titles of works.

autism/Asperger’s Syndrome

There is division in the autism community about the best way to refer to individuals with the condition. Some people with autism, as well as families and other advocates, prefer person-first language. Many other autistic people, including self-advocates, prefer to simply be called “autistic people”. If it’s possible to find out how the individual refers to themselves, use what they prefer. If not, you could use either, but I would lean towards “autistic people”, perhaps with a note describing the choice of language.

Asperger’s Syndrome for many years was diagnosed as a separate condition, but since 2013 it has been placed under the umbrella of autism spectrum disorder by the American Psychiatric Association. However, some individuals may have a strong preference to use the term Asperger’s Syndrome to describe themselves. Other autistic people have a negative association with it, because they feel it enforces a hierarchy in the autism community, and because it is named after Dr. Hans Asperger, an Austrian doctor who is suspected of having worked with the Nazi party. If necessary, a note explaining the nuance of the situation should be included.

Additionally, some autistic people are opposed to using terms such as “high functioning” and “low functioning” to describe the types of support they need, while others embrace this terminology. (7)

committed suicide

Implies criminality. Use “died by suicide”.

crazy/deranged/insane/mad/psycho

Use mentally ill (or name specific mental illness if known).

multiple personalities

Use Dissociative identity disorder.

retarded/retardation

Use “intellectual disability/disabled” or specific medical condition.

Person-first vs. identity-first language


The style guide above favors person-first language. However, this is not preferred by all disabled people. Many prefer identity-first language.

Person-first language: privileges the “person” over the “disability” -- i.e., a “person with paraplegia”. Those who prefer person-first language feel that it presents people in a way in which they are not defined by their disabilities.

Identity-first language: Incorporates a person’s disability more fully into their identity -- i.e. “an autistic person”. Proponents of this style argue that their disability is central to who they are and is an essential part of their identity, history, and experiences.

When trying to decide which form to use, look at the way the individual describes themselves. Do they favor one over the other? In the case of older material, created when this terminology did not exist or the terminology is extremely outdated, or in cases where there is no indication of the subject’s preference, explore the ways in which people in these communities today primarily describe themselves. Engage in participatory appraisal (see below) with either the individual or experts/advocates for their disability.

Other words to avoid


When describing disabled people, particularly performers, avoid using words in our own generated description such as “wondrous”, “extraordinary”, “curiosity”, “marvel”, “miracle”, “unusual”, etc. These words will likely appear in titles and other parts of the material, and where necessary, it’s fine to quote them. It’s also all right to use them when discussing historical attitudes towards disabilities, but be clear that this is not current language. Avoid using in contextual note without an explanation for its presence

Participatory Appraisal


Participatory appraisal is defined by Katie Shilton and Ramesh Srinivasan as “re-envisioning archival principles of appraisal, arrangement, and description to actively incorporate participation from traditionally marginal­ized communities”. (8) In cases where we are actively working with record creators, during the appraisal or processing phase, it is important to interview them to understand their perspectives, preferred language and terms, and learn from their expertise on their own lived experiences. 

When record creators (or subjects) are not accessible and there is little to no information available on their perspectives, it’s incumbent on archivists to consult experts, advocates, and representative organizations in order to adequately describe the materials. This is particularly the case when the materials were not created by the individuals, but about them, as in the case of many theatrical materials: posters and broadsides, programs, postcards, captions on the reverse of photographs, magazine and newspaper articles -- just to name a few of the types of materials in which performers were promoted and profiled. Often these materials will use stage names or nicknames which contain harmful language, will present exaggerations or inaccurate (sometimes outright deceitful) facts about the individual’s disability, nationality, gender, and biography. 

Secondary resources for participatory appraisal


  • If an individual is a public figure, search for research concerning them. Consider age of resource, biases, and author’s identity when evaluating these resources, and look for more than one when possible.
  • If you know the specific medical condition an individual experiences/d, search for authoritative information on this condition, as well as organizations which represent it. When evaluating these organizations, investigate who runs the organization -- are there people who have this disability on the board? What is their reputation among the disability community? 
  • Is there an expert on the individual or on that medical condition that you could contact?
Questions you might ask these stakeholders


  • What language would you recommend I use to describe this disability?
  • What is the history behind [terms used in material or previous description]? What are current attitudes towards these terms by the community?
  • Are there underlying connotations to this language relating to ableism, racism, sexism, etc. that I should be aware of or should draw attention to?
  • What are important features of this disability that I should highlight?
  • What do we know about this individual beyond their experience with their disability and/or stage persona?


You should also go through the information you do have to identify key areas you might ask about for that specific individual or disability that would give better context to your finding aid and researchers’ experiences.

Getting feedback from researchers

If you receive feedback on a finding aid related to our description of a disability, engage with the researcher to find out their background, expertise, and reasons for feedback. Depending on their perspective (Do they have this disability? Are they an advocate or expert in it? Are they knowledgeable about the historical figures in the collection?) and the status of the description (How old is it? Has it recently been revised? Who did we consult previously in our description?), we may incorporate this feedback, verify it with another party first, or perhaps note it in the finding aid as an alternative rather than a replacement. 

Giving credit to those who assist in participatory appraisal

We should credit our collaborators, perhaps in a processing note. It might say something along the lines of:

“This finding aid was created with the assistance of [individuals or organizations], who provided [historical/medical/biographica] context.”

Including Context in Scope and Content notes


The purpose of these notes is:

  • Inform researchers the collection contains materials concerning disability, information about the disability if relevant, and the context of the materials’ creation
  • Either give researchers information on how to give feedback or direct to the Processing Information for Edited Description note (see below) for that information


It is important to sufficiently research these topics before writing notes, especially when it comes to medical or historical information. Some of this may be found in the material, but that will usually not be sufficient. You might consult some of the websites cited in the Style Guide for organizations about specific medical conditions; biographical information about individuals using the resources listed in the Identify Individuals section; or find sources online or in print on the particular historical context. Encyclopedias might be a good starting point -- for example, Oxford Reference -- but you may need to do more in depth research, and you should also be cognizant that some reference sources may contain ableist and other biased content.

Notes might appear at different levels of description depending on the situation. Following multi-level descriptive rules, when notes appear at lower levels, they should also appear at the collection level.

Collection level


When using terminology that is outdated or offensive but which appears in the materials or in quotations from the subject or other contemporaries, make it clear that it originates in the materials or other sources by use of quotations and cite those sources. You may also need to write notes about the historical context not just about the words used, but about the materials’ context, for example sideshows, outdated medical approaches, and attitudes towards disabled people. There may be overlap with other areas of reparative processing, such as racist, sexist, homophobic, or bigoted material; be sure to do due diligence and follow inclusive description practices for all dimensions of the collection.

Example:

Consists of popular sheet music, many with illustrated covers, on a variety of topics, including popular political and entertainment figures, historical and contemporary events, new inventions, everyday objects, and international interests. Some of the sheet music in this collection is related to minstrel shows, which were popular entertainments caricaturing Black people as racist stereotypes, commonly featuring white actors in blackface, as well as racist stock characters such as Jim Crow. Other materials may include stereotypical content and exoticism about other cultures, such as the Middle East. There may also be materials concerning entertainers with disabilities (for example, people with dwarfism) or those who appeared to have disabilities, who performed in circuses, carnivals, and other popular forms of entertainment. Terms used to describe related materials include some terminology from the time of creation, based on language in the sheet music, including "dunce" and "fool."

Harvard Theatre Collection of sheet music by topic, ca. 1800-1950

Series level


In some cases it might be necessary to give context to specific content at the series level. For example, a series of broadsides which contain many examples of harmful language about disabled performers might need a note explaining the context of nineteenth-century sideshows.

Item level


In situations where there is an isolated instance of this type of material, or it’s an item that has particular importance, it might be necessary to include an item level scope note for it. Discretion on the part of the archivist and consultation with colleagues may be helpful in determining if this is the case. 

Documenting Processing Decisions


  • Older description should be preserved and made accessible to staff, and researchers if requested. If there is no department-wide standard for how to preserve older description in general, one easy way would be to save PDFs of older finding aids, and/or export catalog and holding records from Alma, and save them in a shared drive. 
  • Revisions should be noted in the Processing Information note for finding aid authors. 
  • Houghton Library has a standard processing information note template for use in finding aids and bibliographic records that are edited for reparative reasons, which can be found in the Processing Manual and Collection Level Bibliographic Record instructions. https://docs.google.com/document/d/18Q_unHrYuBdxReB2f_pWkLHVENr5RbXUNCG9zKrwqM0/edit?pli=1#heading=h.jrowogwaavq8)
    • “This finding aid was revised in [year] to address [racist/sexist/euphemistic/oppressive], outdated, [and/or] harmful descriptive language. During that revision, description was changed in [general description of descriptive sites, e.g. the scope and contents notes of Series I and Series II].  [Specific information about what was changed.] [Previous versions of this finding aid may be available. Please contact [repository] for details.]  If you have questions or comments about these revisions, please contact Houghton Library. For more information on reparative archival description at Harvard, see <ref href="https://library.harvard.edu/harmful-language-archival-description">Harvard Library’s Statement on Harmful Language in Archival Description.</ref>”
    • Addition related to disabilities: “Inaccurate, outdated, and harmful descriptive language referring to people with disabilities was [removed and/or replaced] in [year].”
    • Addition related to historical context: “Information regarding the historical context in which these materials were [created and/or collected] has been added to the collection-level description in [year].”
    • Notes like this should appear in both the finding aid and the bibliographic record so that researchers see them no matter which resource they use to access the collection.



Endnotes

  1. Throughout these guidelines both identity-first and person-first language are used to describe people with disabilities. For more information, refer to this explanation.
  2. National Organization for Albinism and Hypopigmentation: https://www.albinism.org/information-bulletin-what-do-you-call-me/
  3. The American Federation for the Blind does not have a language resource that I could find, but may be a helpful resource nonetheless: https://www.afb.org/
  4. National Association of the Deaf: https://www.nad.org/resources/american-sign-language/community-and-culture-frequently-asked-questions/ and the World Federation of the Deaf: http://wfdeaf.org/
  5. Little People of America: https://www.lpaonline.org/faq
  6. Pituitary Network Association: http://acromegaly.org/en/

  7. There are many sources about autism. The ones listed by Moretti below are operated by autistic people. We would recommend avoiding organizations and charities that were created by non-autistic people, like Autism Speaks. Many autistic people do not feel well represented by them. 

    1. Autistic Self-Advocacy Network https://autisticadvocacy.org/

    2. Autistic Hoya https://www.autistichoya.com/ (blog which contains many resources)

    3. Autistic Women & Non-Binary Network https://awnnetwork.org/
  8. Shilton, Katie, and Ramesh Srinivasan. 1. “Participatory Appraisal and Arrangement for Multicultural Archival Collections”. Archivaria 63 (1), 87-101. https://archivaria.ca/index.php/archivaria/article/view/13129

Sources


Bogdan, Robert. Freak Show: Presenting Human Oddities for Amusement and Profit. Paperback ed., [Nachdr.]. Chicago: Univ. of Chicago Press, 2009.

Brilmyer, Gracen. “Archival Assemblages: Applying Disability Studies’ Political/Relational Model to Archival Description.” Archival Science 18, no. 2 (June 2018): 95–118. https://doi.org/10.1007/s10502-018-9287-6.

CDC. “Disability Impacts All of Us Infographic | CDC.” Centers for Disease Control and Prevention, March 8, 2019. https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html.

“Disability Language Style Guide | National Center on Disability and Journalism.” Accessed October 4, 2021. https://ncdj.org/style-guide/.

Garland-Thomson, Rosemarie. Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia University Press, 1997.

“Guidelines for Writing About People With Disabilities | ADA National Network.” Accessed October 4, 2021. https://adata.org/factsheet/ADANN-writing.

Autistic Self Advocacy Network. “Identity-First Language,” March 2, 2012. https://autisticadvocacy.org/about-asan/identity-first-language/.

Koford, Amelia. “How Disability Studies Scholars Interact with Subject Headings.” Cataloging & Classification Quarterly 52, no. 4 (May 19, 2014): 388–411. https://doi.org/10.1080/01639374.2014.891288.

Mullaney, Clare. “Disability Studies: Foundations & Key Concepts.” JSTOR Daily, April 13, 2019. https://daily.jstor.org/reading-list-disability-studies/.

Rinn, Meghan. “Nineteenth-Century Depictions of Disabilities and Modern Metadata: A Consideration of Material in the P. T.  Barnum Digital Collection.” Journal of Contemporary Archival Studies 5, no. 1 (March 20, 2018). https://elischolar.library.yale.edu/jcas/vol5/iss1/1.

Shilton, Katie, and Ramesh Srinivasan. 1. “Participatory Appraisal and Arrangement for Multicultural Archival Collections”. Archivaria 63 (1), 87-101. https://archivaria.ca/index.php/archivaria/article/view/13129.

“View of Cultural Humility as a Framework for Anti-Oppressive Archival Description.” Accessed October 4, 2021. https://journals.litwinbooks.com/index.php/jclis/article/view/120/75.

White, Sara. “Crippling the Archives: Negotiating Notions of Disability in Appraisal and Arrangement and Description.” The American Archivist 75, no. 1 (July 10, 2012): 109–24. https://doi.org/10.17723/aarc.75.1.c53h4712017n4728.