3.4: Language and Developmental Disability

People with developmental disability, like people with any impairment, have diverse experiences and views on their own disabilities. Comedian and actor Zach Anner, who writes about his cerebral palsy, made a video with the Cerebral Palsy Foundation for their “Just Say Hi” campaign (2015), which urged strangers to greet people with cerebral palsy and other disabilities. In response to the Cerebral Palsy Foundation’s “Just Say Hi” campaign, disability rights scholar Kim Sauder, who has cerebral palsy, noted, “rather than telling people to ‘just say hi’ a more appropriate lesson would be to make it clear that disabled people should have the right to exist in public without comment” (2015, para. 13). None of us can assume that we know which terms a person with a specific impairment prefers. Even two people with the same impairment might want to be called different terms.

Just because somebody has a diagnosis does not mean that they will identify with the diagnosis, or even identify as disabled at all! The same label might mean vastly different things to two people. Rebecca Monteleone and Rachel Forrester-Jones (2017) interviewed fifteen British people labeled with intellectual disability. Some research participants had created their own definition of intellectual disability related in part to how others had treated them, and affirmed stigma surrounding intellectual disability. Monteleone and Forrester-Jones explained, “Identification of disability primarily relied on physical or tangible experiences of disability. The experience of disability in oneself was often accompanied by self-degradation or feelings of injustice, and the judgement of others played a role in perceptions” (Monteleone & Forrester-Jones, 2017, p. 308). They also found that some people with intellectual disability were unfamiliar with common disability terminology and uncomfortable talking about disability. The authors called for more accessible language access.

Dan Barry investigated a group of mistreated men. The men had intellectual disabilities. They worked in a meat processing plant in Iowa. Barry wrote about what he found in the New York Times. He also talked about words surrounding intellectual disability in the United States. Barry explained that language about intellectual disability has shifted over time. He wrote,

By the 1950s, the accepted term had become mental retardation. … But no matter how well-intentioned, this term also devolved into a pejorative, posing a problem for groups and government agencies whose names included the r-word. And as people with intellectual disability moved out of institutions and took their rightful place in the community, they began to advocate for themselves—and to express their loathing for the word “retarded.” (Barry, 2016, paras. 16-17)

Disability language continues to change over time. What is acceptable in one era is frowned upon in the next. Lawrence Carter-Long explained that over the course of his life, from the late 1960s to the present, “while my condition hasn’t changed, I’ve been called handicapped, handi-capable, disabled, differently-abled, and a person with a disability — the latter being an understandable attempt primarily by parents of disabled children to separate the disability from the person” (King, 2016). Despite the numerous different labels applied to his life, Carter-Long emphasizes that “my condition hasn’t changed” (King, 2016). What he means by this statement is that the view of him as a person, the view of his impairment, and the “proper” way to talk about disability changed rapidly. But the whole time that he was referred to by differing labels, Carter-Long still had the same impairment, cerebral palsy. He didn’t change, though the disability terminology changed, and in some ways, society’s view of him and his disability changed, too. Terms fluctuated from the offensive to the euphemism, from identity-first to person-first.

Advocacy and self-advocacy helped shut down Pennhurst State School and Hospital, a Pennsylvania institution known for abuse and violence against people with developmental disability. One crumbling and abandoned campus building is shown here in 2014. No Admittance. Photograph. Thomas James Caldwell. CC BY