Plain Language

By Liz Weintraub

Research is about me and other people with disabilities. If I don't understand research, then how can I be involved with it? How can I be involved with a research network? At AUCD, we have done a lot with plain language, and I hope that I am part of that legacy. I hope my influence about disability policy for all, and in making sure that our weekly policy newsletter has a plain-language section, has made a difference.

When I wrote my book [All Means All: My Life in Advocacy], it was important to my editor and to me that it really was my work and that my friends could understand and read the book. So, we included a plain-language glossary. I worked with an editor, and later my sister, who works in publishing. At first, I was really nervous about whether my sister would like my ideas, how I saw the world, and how I saw it through the eyes of people with disabilities. When she said, “Wow, this is so good,” it made me feel so good.

The author, left, interviews Kayla McKeon of the National Down Syndrome Society. The 2024 interview featured plain-language descriptions of key terms.

I shared some things in the book that are hard for me to talk about. This includes the time I spent living at Bancroft, a residential facility. Plain language doesn’t mean you don’t talk about important things. Some issues are really hard for people to understand. Well, we need to understand, because these issues are important to us.

When I first started my career, I wanted to be a lobbyist. I wanted to understand how to speak up for people with disabilities. I may not have completely understood what a lobbyist is and why they are important, but I wanted to be an advocate. I had a big vocabulary from sitting at the dinner table when my family talked about all kinds of things. But I also knew I needed to step back and think about how other people with disabilities would understand. Any good storyteller would think about their audience. And that’s what I’ve tried to do with my series, the YouTube video column, Disability Policy for All with Liz.

I think plain language is so important. I’ve shared this example a lot. I go to all kinds of meetings, and I bet you do, too. People will talk and use all kinds of big words. I’ll think, “What does that mean?” I know I need to be the one who's raising my hand and asking. Then at the end of the meeting, people will stop and say, “Gee, thank you for asking that question, because I was too nervous, or too scared, or too embarrassed to ask.”

When I was working for the Senate in 2018 as a fellow in the office of U.S. Senator Bob Casey of Pennsylvania, I asked somebody who had helped me along the way why more people can’t talk in plain language. He laughed and said I was right, that hardly anyone seems to do it. I feel like people didn’t even think about plain language until people with disabilities spoke up and said we need to talk about this. People with disabilities need to be the ones who are speaking up and asking, “What does this mean?” Plain language is for us, not for someone with a PhD.

The plain-language versions of important policy and court cases that we did for Senator Casey made a difference. Staffers in the Senate were writing to us, thanking us for making our descriptions shorter and clearer than anyone else’s. When more people see that plain language is important, we will get to where we need to be.

Plain language takes time, because you need to ask people with disabilities to review it. If you don’t ask for input from people with disabilities, though, what good is it? When we put together the AUCD newsletter, they do their best to write it in plain language, and then they show it to me. Then, I say yes or no, or we talk about the words that people need to know.

Even though we’ve made progress, some people don’t want to move forward. In some ways, I’m disappointed.

I’d like to say it felt like a breath of fresh air, but I really can’t because plain language isn’t “there” yet. People don’t care enough about it. Some of us, and a few national organizations, care about it, but I can tell you there are still so many disability meetings I go to, and I don’t understand what they’re talking about. And then I think, “This meeting isn’t for me.”