Excerpt from my book, Thriving Together: An Essential Guide: Finding Support and Mastering Self-Care for Parents of Children with Additional Support Needs
Clears throat How we speak has power, and how we refer to people can be incredibly important to them. How we speak about people can even impact how we see them. For this reason, I want to explain my use of language referring to disability.
The person-first language movement, as in “a person with a disability,” probably started in Sweden in 1968. A parents’ organization for those with disabled adult children used the phrase, “We speak for them,'' and those disabled adults decided that they would indeed communicate for their own selves. That included being considered people first . It was most definitely in play by 1974 when residents of an institution for developmentally disabled people created the organization known as People First. Their inaugural meeting hosted 500 people in attendance and is considered to be the start of the disability self-advocacy movement in the United States. Boss, right?!
Because the world was messed-up back then (in similar and different ways than it is now) people who happened to be disabled were often treated poorly. The nomenclature used to refer to them was so disgusting that we don’t even breathe these words today. Advocates decided that one of their primary goals was for people to be treated as though they have autonomy and choice in their lives (as they should). They thought that person-first language would help others see these individuals as people and not as problems or less than others.
Since then, person-first language has been embedded into academic and professional spaces and has been seen as a sacred trust amongst those serving in the medical, mental health, disability, and educational communities. We’ve also seen person-first language make its way into our everyday vernacular. Person-first language is most likely what you will see in schools, government agencies, and medical environments, though there is some change happening there. The principle behind this is the belief that language can shape perception and person-first humanizes patients into people. The goal is a positive one. However, things are changing, and people and institutions can adapt to those changes.
The identity-first language movement, as in “disabled person,” is a current movement that seeks to target ableism (the belief that disabled=bad and non-disabled=good). The goal is to reduce stigma and honor the humanity of people by accepting and embracing the disabilities or conditions that they consider to be core to their identities. In short, the goal is to say that it’s ok to be different, and it doesn’t require delicate euphemisms. This movement started in the late 1980s and is still working on gaining broad traction but in some communities such as the Autistic community, it’s a big deal because many Autistics see Autism not as an add-on accessory disability but as a natural type of brain, a neurotype.
In the blind and deaf communities, identity-first is used because despite how others may think, blind and deaf people also see being blind or deaf as a part of who they are. Many advocates with physical disabilities use and prefer identity-first. In short, looking around, you will mainly see people who work with or love disabled people call them something other than disabled and disabled people calling themselves disabled, comfortably.
Disability advocates tend to lean towards identity-first, and parents of children and adults tend to prefer euphemisms like “special needs” and person-first language. This is often out of fear of their children being “othered,” segregated, and excluded. It’s because they are afraid others won’t see the child and only the disability. I understand and respect those fears.
What I advocate for is that we see both the person and the disability or the neurology so that we have the whole picture of the person. I have made the conscious decision in this book to use identity-first language to challenge the stigma of disability being something bad, and also just because it makes sense to me that people should get to decide how they want to be addressed and recognized linguistically. I have also included “differences” because some people using the social model of disability don’t identify themselves or their children as disabled when they are accommodated. The social model sees disability as only the inability of society to accommodate individuals.
For people in my life and those I meet, I will always respectfully refer to someone the way they wish to be referred to, and I invite you to do the same. This goes for everything! There are communities of people with conditions that prefer person-first, such as those with diabetes or epilepsy. I tried to make the best choices to be inclusive and responsive to the prevailing guidance from disability advocates from the biggest categories of disability.
If this rubs you the wrong way, I understand that and hope you can read on to gain something from this book without distraction. Please know this decision was made with care and love. Please also consider further reading on the topic.
The history of person first language: Crocker, A. F., & Smith, S. N. (2019). Person-first language: are we practicing what we preach?. Journal of multidisciplinary healthcare, 12, 125–129. https://doi.org/10.2147/JMDH.S140067
The History of People First: People First. (2022). History of people first. People First, WV. https://www.peoplefirstwv.org/old-front/hidtory-of-people-first/
Brown, Lydia. (Aug 2011). The significance of semantics: person-first language: why it matters. Autistic Hoya. https://www.autistichoya.com/2011/08/significance-of-semantics-person-first.html
Liebowitz, Cara. (Mar 2015). I am disabled: on identity-first versus people-first language. The body is not an apology. https://thebodyisnotanapology.com/magazine/i-am-disabled-on-identity-first-versus-people-first-language/
American Psychological Association. (Sept 2019). Disability. APA Style Guide. https://apastyle.apa.org/style-grammar-guidelines/bias-free-language/disability
Comments