Time for another advanced lesson in disability etiquette and language! If you’d like to get caught up on this topic, you can read some of our previous blog posts on inclusive language choices, service animal etiquette, microagressions and accessible social media.
This is a topic that trips people up. What I'm about to tell you may conflict with information you have learned previously. People First Language is the language the vast majority of people have been taught to use. People First Language is where you describe someone as a person first, then specify their disability. For example, you would say person with epilepsy, person with diabetes, or person with Crohn’s disease. The intention of People First Language is to place the person first, so the disability is not the primary, defining characteristic. Instead, you see someone as a person first, and their disability is only one of many aspects of the whole person.
People First Language promotes the idea that we should focus on the personhood and the humanity of everyone. In general, I can agree we should use language that gives people dignity and respect. People are complex, and deserved to be viewed that way, rather than have the focus be on one part of their identity. The good news is, using Person First Language is a neutral way to discuss disabilities, and you’re safe to continue using it. It is certainly better than referring to someone as “that ADD kid” or using the phrase “the disabled”. The bad news is People First Language might not always be the best choice.
The alternative to People First Language is Identity First Language. Identity First Language is based on the belief that a person cannot be seen and respected as a complete, complex person by ignoring their disability. This may be the first time you’ve ever heard of the term Identity First Language. I admit I hadn’t heard about it before joining the RMADAC. It can be really hard to re-train your brain to use different terminology. I know I still slip up sometimes, or have to take a moment to think before I speak. But trying to use this terminology is worth the effort.
In Autism, Blind, and Deaf communities, Identity First Language is preferred because they understand their health condition as an inherent, important part of their identity. People have argued that the emphasis of personhood despite a disability only contributes to the stigma surrounding disabilities. We don’t feel the need to use this type of language to refer to other aspects of a person. That is because other aspects of a person’s identity do not carry the societal belief that they are unworthy or less than. Imagine how silly you would sound to refer to someone as a person with brunetteness, or a person with tallness, or a person of youth. Using Identity First Language would mean you describe someone as “an Autistic person”, “a Blind person”, or “a Deaf person”. You might have noticed that I capitalized those conditions. Some people see their condition as part of a shared identity with a larger community. So you would use lowercase d deaf to describe the condition, and capital D Deaf to describe the culture and community. A person might be deaf (if they have the medical condition of having hearing loss), but may not identify as Deaf (culturally Deaf/part of the Deaf community).
Some people prefer People First Language because of the negative association of certain diseases and conditions. The logic goes that if a disease has a negative impact on a person's life, it is more appropriate to say "a person with cancer", rather than "a cancerous person". However, Lydia Brown (an Autistic disability rights activist) explains: “Cancer is a disease that ultimately kills if not treated or put into long-term remission. There is absolutely nothing positive, edifying, or meaningful about cancer. Cancer is not a part of a person’s identity or the way in which an individual experiences and understands the world around him or her. It is not all-pervasive. Autism, however, is not a disease. It is a neurological, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a person’s identity, and it defines the ways in which an individual experiences and understands the world around him or her. It is all-pervasive.“
You don’t have to take my word for it. As with other matters of etiquette, the best course of action will always be determined by the individual. So rather than assume, just ask what they prefer. The guidance to use Identity First Language has been provided by the Autism Self-Advocacy network. In all situations involving people with disabilities, we encourage you to follow their motto: “Nothing about us without us”. Involve people with disabilities, rather than make assumptions, and you will make the best choices possible.