40 Big Ideas

Summary

Person-first language is a way of talking or writing that describes someone as a person before naming their disability or condition. It avoids putting labels on people. This was an important idea when People First groups started forming in the 1970s, as more people with disabilities were leaving institutions to live in the community. Today, some people want to go back to using their disability first, as a point of pride. This is called identity-first language. There is room for both ways of speaking, as long as they are respectful.

Person-first language offered people a way to be called by their name first and their disability second. It really grew out of the People First Movement that started happening in the 1970s. These self-advocacy groups formed around the idea that we are humans, not just diagnoses. For groups that called themselves people-first organizations, it was hugely powerful. It gave us a starting point to find other people around the country who were committed to self-advocacy and to independent living, away from institutions.

When I first worked for independent living centers in the 1990s, I worked with families and their young adult children, 14 to 21 years old. I would go to families’ homes and tell them I was there to facilitate a conversation between the parents and the young adult, and I would ask the young adult my questions first so I could hear directly from them instead of the parents first. It was hard for some family members to wait for their adult children to speak for themselves. Using person-first language with them—saying “a person with disabilities” rather than “a disabled person,” for example—really did start to change how they viewed their family member. It brought forward the idea that people with disabilities are human. They are individuals. Then, as now, there was a lot of bullying and name-calling happening, so talking about the language we used brought an awareness in the community that hadn’t been there before.

More recently, as some people preferred and began using identity-first language – using terms like “autistic adult” or “disabled activists” – it was kind of hard for some of us who grew up in the Self-Advocacy Movement to understand why they wanted to do that. I was working hard to make sure the person was first, and that I called people by their names. But I understand that it is a new way of having a source of disability pride.

Today we can choose how we want to describe our disabilities, and that’s great. We all come into self-advocacy through different doors, and whatever identity I choose is what I choose. For me, person-first language says that I am not just my disability. I’m so much more. I’m a sister, a mom, an auntie, a trainer, or a speaker, and my disability experiences give me an awareness of how I treat others. Wherever you come from, I value you as a person, and you’re part of my circle. And so, if you believe in identity-first language and that’s how you experience self-advocacy, I’m glad you came to that. Now let’s move forward, together.