The Language of Disability
How terms ABOUT disabilites have changed throughout the years
By H. Barry Waldman, DDS, MPH, PhD, David A. Ervin, BSc, MA, FAAIDD, Steven P. Perlman, DDS, MScD, DHL (Hon), Rick Rader, MD, FAAIDD, FAADM, and Allen Wong, DDS, EdD, DABSCD
Over the last several decades, the language of disability has changed. And, once it changed, it changed again. And again. In 2007, the organization known today as the American Association on Intellectual and Developmental Disabilities changed its name to drop the widely-agreed-pejorative ‘mental retardation’ as a response to self-advocates advocating for many, many years to stop using ‘the R word.’ There has also been a shift toward person-first language. This convention demands that we refer to people first – a person with a disability versus a disabled person. Person-first language has its roots in the 1960s but was embraced more fully by the disability community in the late 1980s. Okay, so fair enough. We use person-first language, we drop the ‘R word’, and all is okay in the world. Yes?
Not quite. Or, at least not for everyone. In the autism community, for example, autism is embraced as part of a person’s identity. In that context, referring to an autistic person acknowledges that part of the person’s identity. For many, reference to them as a person with autism (person-first language) is anathematic to their preference for identity-first language. The prominent Autistic Self Advocacy Network (ASAN) puts it this way:
“Autism is a part of us. It is a disability that we will have our whole lives, not an illness that might go away. And it is not a bad thing – we are proud to be autistic! We think saying ‘person with autism’ can reinforce stigma or send the message that autism is a scary thing. By saying ‘autistic person’ or ‘autistic community,’ we are emphasizing that autism is an important part of who we are.” (ASAN, n.d.)
There’s also the increasingly controversial use of ‘special needs’ that has come to refer to people – children mostly, but also adults – with intellectual and/or developmental disabilities (IDD) (Gernsbacher, et al., 2016). Many people with IDD and others bristle at the use of this language. They argue that their needs are no more special than anyone else’s. Each person looks a bit different to other people, and everyone (everyone!) has needs.
A 2021 USA Today article entitled “‘I am not ashamed’: Disability advocates, experts implore you to stop saying ‘special needs’” (Oliver, June 11) refers to the National Center on Disability and Journalism (NCDJ), a service of the Walter Cronkite School of Journalism and Mass Communication at Arizona State University, Disability Language Style Guide, in which the term ‘special needs’ should be “avoided when describing a person with a disability” because “the word ‘special’ in relationship to those with disabilities is now widely considered offensive because it euphemistically stigmatizes that which is different” (NCDJ, 2021). An increasing awareness for the need for change was the motivating initiative by The New York Times and the NCDJ to create a fellowship to develop early career journalists with an expertise in and improve media coverage of disability issues. Yes, language matters.
The specialized words and respective meanings to describe people with disabilities have been changing along with changes in society’s attitudes. Very old terms to describe people with IDD include, believe it or not, idiot, imbecile and moron. Fortunately, language has evolved, and people with disabilities simply want to be recognized for their abilities and aspirations. With that in mind, what do we do with the conundrum of disability language? How do we navigate person-first versus identity-first language, and why does it matter?
Realities
Generally speaking, prior to the mid-1800s, people with intellectual disability, cerebral palsy, autism, and/or epilepsy resided at home and were cared for by their families. Life expectancy for individuals with severe disabilities was not nearly as long as it is today. Beginning in the mid-1800s, institutions were built in the US by state and local governments to house people with IDD. These institutions were usually built on the outskirts of or altogether out of town – out of sight, out of mind. Societal attitudes of the day, which persisted into the first half of the 20th century, fostered this segregating style of management, a reflection of the belief that disability and disease were one-and-the-same and that people with disabilities were defective and deviant. This gave rise to eugenics, lobotomies and more. The language of the day was, well, awful.
Idiot, imbecile and feeble-minded were terms used to describe people with intellectual disability widely in the 19th century. In 1866, A Manual for the Classification, Training, and Education of the Feeble-Minded, Imbecile, and Idiotic was published in London (Duncan & Millard, 1866). This volume essentially codified the use of these terms to describe a wide range of “definite mental and bodily deficiencies” (p. 2). American physician, Walter Fernald, in his 1912 speech to the Massachusetts Medical Society, referred to “the feeble-minded [as] a parasitic, predatory class, never capable of self-support or of managing their own affairs. The great majority ultimately become public charges in some form. They cause unutterable sorrow at home and are a menace and danger to the community. Feeble-minded women are almost invariably immoral, and if at large usually become carriers of venereal disease or give birth to children who are as defective as themselves” (Massachusetts Medical Society, 2016).
In 1927, the Supreme Court of the United States, in a decision written by Justice Oliver Wendell Holmes, Jr., ruled that compulsory sterilization of women with intellectual disabilities was permissible “for the protection and health of the state.” In his opinion, Justice Holmes infamously wrote “it is better for all the world, if instead of waiting to execute degenerate offspring for a crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. Three generations of imbeciles are enough” (Carrie Buck v. John Hendren Bell, Superintendent of State Colony for Epileptics and Feeble Minded, 1927).
Indeed, for centuries, society treated people with IDD as objects of fear and pity. The prevailing attitude was that such individuals were incapable of participating in or contributing to society and that they must rely on welfare or charitable organizations (Paul Burtner College of Dentistry, University of Florida, n.d.). Unfortunately, segregating from society further stigmatized people with disabilities and resulted in lives of isolation, disconnection from family and community, and in terrible social and developmental outcomes. It’s little wonder, in such circumstances, that the words used to described people with IDD were as demeaning and dehumanizing as they were.
In 1966, President Lyndon B. Johnson established the President’s Committee on Mental Retardation. Its purpose was to ensure the right of a “decent, dignified place in society” for people with mental retardation.
In 2009, Rosa Marcellino, a nine-year-old girl with Down syndrome expressed that she did not like being called ‘retarded.’ Rosa brought to a boil what had been a simmering movement led by people with IDD for years. Working with her parents, they advocated for the nationwide removal of the ‘R word,’ In 2010, President Barack Obama signed Rosa’s Law (Public Law 111-256) which changed ‘mental retardation’ to ‘intellectual disability’ in US federal law. The law was a key component in the groundswell of advocacy efforts promoting inclusive, people first language for people with intellectual disabilities. The President’s Committee changed its name to the President’s Committee for People with Intellectual Disabilities, as it is currently known. Words have significance, power and authority, and the ‘R word’ was abandoned because of negative public sentiment.
Who Decides?
Terminology has continued to evolve. From mental deficiency (and referring to people as ‘deficient’ or ‘defective’) to mental retardation, from ‘trainable mentally handicapped’ to ‘educable mentally retarded’, and, more recently – thankfully – intellectual disabilities or intellectual and/or developmental disabilities. All along, people with IDD have increasingly influenced the terms we use. In the 21st century, influence has changed to expectation, and (finally!) people with disabilities are creating and defining the convention. From the USA Today article referenced above:
“[Lawrence] Carter-Long, communications director for the Disability Rights Education & Defense Fund, says the word disabled connects members of the community ‘to each other, our common history, and to the lineage of all those who fought, protested and persisted so that one day we could be proud of disability history too.’ [Lisette] Torres-Gerald says there is power in the word disabled. ‘I am not ashamed to be disabled; I consider it a difference that allows me to view the world in a different way than other people’ (Oliver, 2021).”
In a compelling 2021 interview (Ladau, 2021) with well-known self-advocate, Julie Petty, when asked how she chooses to refer to herself, she said this:
“I think language has evolved over time – I used to be strict about being called a person first because I feel I deal with ableism all the time, and people see my disability, and that’s what they see first. So therefore, they don’t treat me maybe like a person; they treat me as a child or talk down to me. So, I prefer people-first language. But as I said, I have evolved, and we have evolved as a disability community. And I don’t mind being called a ‘disabled woman.’ I’m proud to reclaim my disability, as you were saying. But don’t call me ‘cerebral palsy girl,’ you know? Don’t call me by my disability. So, I go back and forth between people-first language and identity-first. But I think people should be able to choose, and I always say everybody has their name. Just call people by their name!”
Self-Advocates Becoming Empowered (SABE), a national self-advocacy organization whose leadership and Board of Directors are comprised of people with IDD and other disabilities, publish a People First Language Manual in which the organization quite unequivocally states “we will not stand for any other languige except people first languige” [sic] (p. 2) (SABE, n.d.).
Renowned autistic advocate, Lydia Brown, offers all of us sage guidance, which drives at the heart of who gets to choose what language: When in doubt, ask.
“Different communities of actually-disabled people or people with disabilities have different preferences. But as with any group, especially any group of marginalized people, it’s the people who we’re talking about who should be dictating what they’re called. The same word that’s empowering for some people might be retraumatizing for others.
“If you don’t know the preference of the person and don’t have a chance to ask them, go with the majority opinion of the community, because that’s a safe bet. If you do have a chance to ask, ask and use that. And if you’re referring to a group of people who have different preferences, use the language of the majority of the group.” (Callahan, 2018)
The Right Words
That we will err and cause unknowing offense is as certain as sunrise in the East. The authors of this article, who have dedicated their lives to supporting the dental health of people with IDD, will stumble in choosing the right words. We all will. This much we know. There is no hard, fast rule that is so inviolate as to give us clear and compelling guidance but this: Ask.
Some people with disabilities will indeed prefer identity-first language. For them, it is ‘disabled people.’ Others will prefer person-first language. For them, it’s ‘people with disabilities.’ For others, it may be something different altogether. The elegance here is that unlike in the early, darker days of the 19th and well into the 20th centuries, we are finally awakening to people with disabilities/disabled people choosing the words the world uses to describe them.
Our history proves positive that the language we choose can have a profound impact on the actions that follow. To refer to people as imbeciles and a ‘parasitic, predatory class, never capable of self-support or of managing their own affairs’ gave rise to institutionalization and the eugenics movement, all of which was possible when describing people as less than human.
This history compels us to be thoughtful in the language we choose; and, this history and the trauma it brings to a community of our fellow human beings with IDD and other disabilities settles fully and finally who gets to choose the right words. When in doubt, ask. When you do, listen carefully and embrace the answer, knowing it might change with next person you ask or the next time you ask the same person. That’s all okay. It’s their choice, after all.
References
Autistic Self Advocacy Network. (n.d.). About ASAN--FAQ. Retrieved July 28, 2022, from: https://autisticadvocacy.org/about-asan/faq/
Callahan, M. (2018, July 12). ‘Autistic person’ or ‘person with Autism’: Is there a right way to identify people? News@Northeastern. other, Northeastern University. Retrieved July 13, 2022, from https://news.northeastern.edu/2018/07/12/unpacking-the-debate-over-person-first-vs-identity-first-language-in-the-autism-community/
Carrie Buck v. John Hendren Bell, Superintendent of State Colony for Epileptics and Feeble Minded (United States Supreme Court May 2, 1927).
Duncan, P.M. & Millard, W. (1866). A Manual for the classification, training, and education of the Feeble-minded, imbecile, & idiotic. Longmans, Green, and Co., London.
Gernsbacher MH, Raimond HR et al. Special needs is an ineffective euphemism. Cognitive Research: Principles and Implications. Published online 2016 Dec 19. doi: 10.1186/s41235-016-0025-4
Ladau, E. (2021, April 21). A Conversation about Disability and Language with Julie Petty. A Conversation About Disability and Language with Julie Petty. other, Disability and Philanthropy Forum. Retrieved July 13, 2022, from https://disabilityphilanthropy.org/resource/a-conversation-about-disability-and-language-with-julie-petty/
Lightner, L. (n.d.). Special Needs vs Disabled? The “new” term to say instead of Special Needs. Available from: https://adayinourshoes.com/disabled-instead-of-special-needs/
Massachusetts Medical Society (2019, October 16). The burden of Feeble-Mindedness. Retrieved July 28, 2022, from https://www.massmed.org/About/MMS-Leadership/History/The-Burden-of-Feeble-Mindedness/
Oliver, D. (2021, June 11). ‘I Am Not Ashamed’: Disability Advocates, Experts Implore You to Stop Saying ‘Special Needs’. Available from https://www.usatoday.com/story/life/health-wellness/2021/06/11/disabled-not-special-needs-experts-explain-why-never-use-term/7591024002/
Paul Burtner College of Dentistry, University of Florida. (n.d.). Society’s attitude toward people with disabilities. UF monogram. Retrieved July 28, 2022, from https://paul-burtner.dental.ufl.edu/oral-health-care-for-persons-with-disabilities/societys-attitude-toward-people-with-disabilities
Self Advocates Becoming Empowered. (n.d.). People first language manual - SABE USA. Position Statements--SABE USA. Retrieved July 28, 2022, from https://www.sabeusa.org/wp-content/uploads/2014/01/People-First-Language-Manual.pdf
Walter Cronkite School of Journalism and Mass Communication, Arizona State University. (2021, August). Disability Language Style Guide. National Center on Disability and Journalism. Retrieved July 28, 2022, from https://ncdj.org/style-guide/#mentallyretarded
About the Authors
David A. Ervin, BSC, MA, FAAIDD, is CEO of Makom, a community provider of supports to people with intellectual and developmental disabilities (IDD) in the Washington, DC metropolitan area. With 35 years in the field, Mr. Ervin has extensive professional experience working in and/or consulting to organizations and governments in the U.S. and abroad. He is a researcher, published author and speaks internationally on health, wellness and healthcare for people with IDD and other areas of expertise.
H. Barry Waldman, DDS, MPH, PhD is SUNY Distinguished Teaching Professor Department of General Dentistry, Stony Brook University, NY.
Steven P. Perlman, DDS, MScD, DHL (Hon) is Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine.
Rick Rader, MD, FAAIDD, FAADM, DHL (hon) is Director, Habilitation Center, Orange Grove Center; President, American Association on Health and Disability; Member, National Council on Disability; Board, American Academy of Developmental Medicine and Dentistry; National Medical Advisor, National Alliance for Direct Support Professionals; Board, National Task Group on Intellectual Disabilities and Dementia Practices.
Allen Wong, DDS, EdD, DABSCD is a professor and the director of the Dugoni School of Dentistry AEGD and Hospital Dentistry program in the San Francisco area, and is the Global Clinical Advisor to the Special Olympics Special Smiles. He is current president of the American Academy of Developmental Medicine and Dentistry (AADMD).