By Dr. Monica Simonsen and Dr. Cynthia MruczekUniversity of Kansas Department of Special Education
Positioning Ourselves in the Dialogue
We enter the conversation around person-first language vs. identity-first language as simultaneous “insiders” and “outsiders” in the dialogue.1 First, we are lifelong educators who have worked at various levels of the special education community (e.g., classroom educators, teacher leaders, university professors, etc.) and one of us is a parent of a child with a learning disability, which grants us some insider knowledge and experience. At the same time, we both identify as nondisabled individuals, which indicates our “outsider” status to aspects of special education, as well as specific positions within the present conversation.
We are mindful of the long-standing mantra of advocates in the disabled community, “nothing about us, without us.” We do not claim to hold the answers or definitive “best practices” regarding language. It is with this balance in mind that we invite others into the conversation to listen, consider, reconsider and reimagine the ways words can impact efforts toward socially just, inclusive education.
Person-First Language Versus Identity-First Language
Since first being introduced in the late 1980s, the generally accepted practice in the United States (and the guiding principle in KU’s Department of Special Education) has been to use person-first language. Aligned with the social model of disability, person-first language was intended to shift the focus on the impairment to the social barriers that impede full participation in the community.
“I come from a time where that word, ‘autistic,’ had—still has—a negative meaning. It’s offensive. When someone refers to my son as ‘the autistic,’ I cringe at that word; I get ready to defend him.” – Mother2
Interestingly, in recent years, many self-advocates (particularly in the autism community) have expressed preference for identity-first language such as “autistic,” “autistic person,” or “autistic individual” comparing this phrasing to the way we refer to “Muslim,” “African American,” “lesbian/gay/bisexual/transgender/queer,” “Chinese,” “gifted,” “athletic” or “Jewish” individuals.2
Words have power. Phrasing impacts meaning and perception. Proponents of person-first language advocate for conveying the humanity of disabled people over the disability. They often point to other qualifiers, such as “person with cancer” rather than “cancerous person.” That comparison alone speaks to the powerful ways that language shapes meaning. Unlike disability status, cancer is a disease and does not shape a person’s identity in the same way, for example, having autism does. Being “Muslim” or “African American” or “Jewish” or “disabled” are all characteristics that are essential to how a person experiences the world around them. A person cannot be separated from these identifiers.
It has been said that person-first language separates the disability from a person’s value or worth, suggesting that the disability is inherently negative, akin to a disease. In 1993, the National Federation of the Blind adopted a resolution opposing person-first language saying that the notion that "the word 'person' must invariably precede the word 'blind' to emphasize the fact that a blind person is first and foremost a person" as "totally unacceptable and pernicious" and resulting in the exact opposite of its purported aim, since "it is overly defensive, implies shame instead of true equality, and portrays the blind as touchy and belligerent.”3 Deaf-culture has long used “deaf-first language” as a way of celebrating the positive cultural identity that is associated.
As an alternative to person-first language, some in the disability community (especially self-advocates) have lobbied for wide adoption of “identity-first” language which is aligned with the minority model of disability, which asserts that disability is a diverse cultural experience and an essential identifier.4
“It is impossible to affirm the value and worth of an autistic person without recognizing his or her identity as an autistic person. Referring to me as ‘a person with autism,’ or ‘an individual with ASD’ demeans who I am because it denies who I am.” – Mother2
“… there’s no way to see the person without the disability. A person is not a blank canvas that other things are added onto. From the moment we’re born, perhaps even from the moment we’re conceived, our experiences shape us and make us who we are. My disability, among many other things, is integrated into who I am. There is no way to separate me from my disability. It’s not as if ‘person’ is a standard action figure, while ‘disability’ comes in the accessory pack designed to make you spend more money. That’s the image that comes to mind when I hear ‘person with a disability.’” – Cara Liebowitz5
Like other cultural identities and experiences (i.e. race, gender identity, sexual orientation, etc.), disability culture has a common set of core values, while still maintaining significant within-group diversity: It has been suggested that the degree to which people use identity-first language is related to their stage of disability identity development, which may be impacted by a number of personal, cultural, economic, family and disability factors.6 7 Future research should explore intersecting identities (e.g. race, ethnicity, gender, disability, etc.) and the connection between disability cultural identity and use of identity-first language.
Some advocates within disability culture recommend alternating person-first language with terms such as “disabled” or “disabled people” or that writers should capitalize “Disabled,” “Deaf” and other qualifiers to indicate allegiance to disability culture. The American Psychological Association Publication Manual8 recommends asking people how they wish to be referred to when possible. When the wishes of the individuals is not known, the APA recommends using person-first language in order to reduce bias toward people with disabilities.9
One certainty we can derive from the ongoing conversation about person-first language and identity-first language is that we share a common goal: to recognize, affirm, and validate all individuals’ identities and personhood. It is incumbent on educators and researchers, as leaders in the field, to endeavor toward centering the voice of disabled people and strive to acknowledge the varied perspectives of self-advocates through thoughtful use of language.
Join the Conversation
KU’s Department of Special Education welcomes thoughtful educators and advocates committed to inclusive education practices. If you are interested in joining the KU community, explore our online graduate certificate and master’s programs in special education.
Sources
1. Brayboy, B. M. & Deyhle, D. (2000). Insider-Outsider: Researchers in American Indian Communities. Theory into Practice, 39(3), 163-169.
2. Brown, L. (2011). The Significance of Semantics: Person-First Language: Why It Matters. Retrieved on August 5, 2019, from https://www.autistichoya.com/2011/08/significance-of-semantics-person-first.html.
3. Retrieved on August 5, 2019, from https://nfb.org/images/nfb/publications/bm/bm09/bm0903/bm090308.html.
4. Altman, B., Albredht, G. L., Seelman, K. D., & Bury, M. (Eds.) (2001). Handbook of disability studies. Thousand Oaks, CA: Sage.
5. Liebowitz, C. (2015). I am disabled: On identity-first versus people-first language. Retrieved on August 5, 2019, from: https://thebodyisnotanapology.com/magazine/i-am-disabled-on-identity-first-versus-people-first-language/.
6. Dunn, D. S., & Burcaw, S. (2013). Rehabilitation Psychology.
7. Gill, C. J. (1997). Journal of Vocational Rehabilitation.
8. American Psychological Association (2010). Publication manual of the American Psychological Association. Washington, DC: Author.
9. Dunn, D. S., & Andrews, E. E. (2015). Person-first and identity-first language: Developing psychologists’ cultural competence using disability language. American Psychologist, 70(3), 255-264. doi:http://dx.doi.org.www2.lib.ku.edu/10.1037/a0038636.