Plain Language

By Max Barrows, Thad Dutil, Karen Topper, and Sean Zapolski

Sometimes we feel talked down to, like we are not capable of understanding. Wanting plain language does not mean we cannot understand complicated information. Treat us as equals, in a way that feels meaningful and makes us feel heard. We want to contribute—and we can, when given the opportunity.

For 31 years, Green Mountain Self-Advocates (GMSA) has pushed for inclusion and lived by the idea of “nothing about us without us.” Plain language is at the heart of our work and how we make our beliefs real for people every day. We learn from the Autistic Self Advocacy Network and team up with them to present webinars on creating plain-language resources.

Plain Language in Action

When COVID-19 hit in March 2020, everything was changing fast. Nobody knew what to think of all the mysterious things happening. We had one day left to work together in our office before the state of emergency went into effect. We dropped everything and created our first COVID-19 plain language booklet. Within two weeks, it had been translated into 11 languages, and we were receiving emails from across the United States and even from other countries.

Faith DeFelice uses an interactive game as she leads a healthy eating workshop at Green Mountain’s Voices and Choices conference.

Our years of experience with plain language helped us take on the complicated Centers for Disease Control and Prevention documents. We broke down life-saving information into everyday words that anyone could understand—not just people with intellectual disability.

During the pandemic, the advice kept changing. We created many plain-language booklets to help people keep up with the changes. We also held peer support hours on Zoom twice a week and connected with self-advocate leaders from more than 35 states. People with disabilities needed a trusted place to get clear, up-to-date information.

It was a scary and confusing time. We often heard different rules from different people. Families told us one thing, support staff told us another, and our towns had their own rules, too. It was hard to know what to follow.

I (Max) led Zoom sessions for GMSA during the stay-at-home orders. Talking directly with our peers helped reduce loneliness and clear up wrong information. People asked real-life questions like, “Can I walk around in my yard, or will the police arrest me?” and “Do I need to wear a mask if I’m alone in my house?”

What Plain Language Looks Like

Our mentors at the Autistic Self Advocacy Network showed us how plain language works in everyday life. Plain language includes these key features:

• Shorter sentences & paragraphs
• Uses more common words
• Gives definitions for important, more complex terms/jargon
• Uses examples to help readers understand ideas in a more concrete way
• Avoids unnecessary information
• Uses clear & straightforward language
• Uses active voice instead of passive voice

Allies Who Get It Right

The Vermont Developmental Disabilities Council does more than just explain bureaucratic information in a way we can understand. They hired a cartoonist to work with self-advocates to illustrate plain-language booklets that explain our health.

The Vermont State Director and Deputy Director of the Developmental Disabilities Services Division meet with us once a month. We get to decide what is on the agenda. They give us as much time as we need to ask questions. They are honest, direct, and easy to understand. It feels like they truly want our input on the decisions the state is making.

We feel a deep sense of appreciation when our true allies go out of their way to communicate in plain language. This way, we can fully participate and contribute.

Meetings That Create Barriers

Many meetings move too fast. We worry that we are missing things that could be important. It often feels like we are always trying to catch up and constantly asking people to back up and explain again. When we are out of sync, our concerns and suggestions can get missed or forgotten.

When meeting information is written at a college reading level, it sends a message. It feels like people do not expect professionals to be people with intellectual disability. This can make us feel like we are not smart enough to be part of the group—even though we belong there.

Planning, Budgets, and Services Without Plain Language

When they give us drafts of our service plans, they do not always explain what everything means. And for sure, the budgets for our services are not always in plain language. It is hard to give your input if you don’t know exactly what they are saying. We want to feel empowered to advocate at our meetings. Instead, we are struggling to process details that are not in plain language. It is also not helpful when people misinterpret what we say or make changes to our answers.

Language Barriers Beyond Big Words

It’s not just the words used, but also the phrases that sound like metaphors. We read each sentence carefully and ask if someone might misunderstand it if they take the words exactly as written. We avoid figures of speech or sarcasm that people may not know. It all needs to be more straightforward.

What Changes When Plain Language Is Used

When we are at our planning meetings, and people use language we understand, we can step in and join the conversation. We understand our supports and services better and how they are meant to help us. We can catch things that will not work or that we do not agree with. When people use plain language, we can give feedback, and that is important.

At policy meetings, when the discussion is in plain language, we feel more in control of what is happening to us. We can embrace who we are, no matter our mental or physical abilities. It helps us feel like we are having an impact. We can make a difference when the conversation is at our level. We feel like we matter.

Plain-language resources

Plain Language in Self-Advocacy Spaces

Sharing information in plain language is a skill we all need to practice. It is easy to slip into using jargon or taking shortcuts when we talk or write. Our GMSA team of 16 peer trainers and three allies is always watching out for this. We support each other to communicate clearly. This is especially important during self-advocacy meetings. Our number one goal is to pay close attention to the words we use so everyone can understand what we are trying to say.

The Call to Action: Focus Groups & “Nothing About Us Without Us”

At Green Mountain Self-Advocates, we are constantly hiring peers to write and review plain-language information. We ask:

• Does this text make sense to you?
• How would you say it?
• Do you have an example?
• Is there too much information?

Using focus groups of people with intellectual disability to review plain-language materials is not optional—it is how we do our work. This happens every day in our local group meetings, peer support hours on Zoom, staff meetings, and even board meetings. Our members are the experts in their own lives. They know when something is confusing. When people with intellectual disability are included, the results are clearer and work better for everyone.

Self-Advocacy Groups Earn Money By Doing Plain-Language Projects

Many government offices, colleges, and service providers want to rewrite their documents in plain language. State and local self-advocacy groups may be asked to help rewrite or translate information to make it easier to understand. When this happens, say thank you! Let them know how important it is to give people with intellectual disability equal access to information. Then ask what they have budgeted to pay you for your expertise.