Plain Language

By Zoe Gross

The Autistic Self Advocacy Network (ASAN) is a policy advocacy group run by and for autistic adults. A major part of our work is producing cognitively accessible resources. We make plain language resources. We also make easy-read resources. Easy read (autisticadvocacy.org/resources-3/accessibility/easyread) is a picture-assisted format for conveying written information, where each sentence is paired with an icon illustrating its meaning. ASAN has been working on plain-language and easy-read resources for 10 years.

We could not do this work without our focus group editors: self-advocates with intellectual disability (ID). We pay them to review and edit many of our resources. From the basics to the fine details, working with our focus group editors has fundamentally changed the way we approach writing in cognitively accessible formats.

Learning from our first focus group

In August of 2019, ASAN held a focus group of people with ID to edit our easy-read toolkit, Your Vote Counts: A Self-Advocate’s Guide to Voting in the U.S. (autisticadvocacy.org/policy/toolkits/voting). We held the focus group at the headquarters of Green Mountain Self-Advocates (GMSA) in Montpelier, Vermont. I facilitated the group, along with Reid Caplan, ASAN’s publications manager, and Max Barrows, GMSA’s outreach director. Our focus group editors were Jeremy Carpenter, Rachel Colby, David Frye, Kathy Hook, Samantha Shoram, Taylor Terry, Tesha Thibodeau, Danielle Viau, Nicole Villemaire, and Molly White.

Our focus group was held over several days, with many short editing sessions and plenty of breaks. To track the group’s edits, we created a chart showing each line of text along with its accompanying image, which could be marked up, edited, or commented on using Google Docs. Together, we read each section of the text, repeatedly asking the group these questions:

• Does this make sense to you?
• Does the picture help you understand the words?
• Are we saying the ideas in the right order?
• Is there too much information? Not enough information?
• Would you change anything to make this better?

This was our first focus group, and we learned a tremendous amount from our editors -- not only about how to improve that specific text, but also about the basics of how we wrote and illustrated all our easy-read resources. For example, before this focus group, ASAN included a glossary (the “words to know” section) at the end of each easy-read or plain-language resource. Our editors pointed out that they would rather learn the vocabulary terms in the resource before reading it, rather than after, so the glossary should be the first section, not the last.

The editors also changed the way we wrote definitions in the body text of an accessible document. Before the focus group, many of our definitions were written like this:

“At the polling place, a worker will give you a list of candidates you can vote for. This is called a ballot.”

After reading definitions that were worded this way, our editors would ask us questions like “What is a ballot?” The way we had written definitions made them hard to learn, even hard to notice.

We reworded them so editors could more clearly see that we were defining a new term: “A ballot is a list of candidates you can vote for.”

We also learned that some of the icons we used to illustrate sentences were not being understood the way we intended. For example, we used an image of a hiker on a steep trail, with a trail marker showing a black diamond, to illustrate the concept “difficult.” Our editors said that this did not work for them. They didn’t recognize the black diamond trail marker, and the rest of the icon just looked like someone hiking. We now use an image of a person lifting a heavy boulder to convey “difficult.” The editors also took issue with our use of a shield to illustrate the concept “protect.” The shield, they said, made them think of police, and they had more complicated thoughts and feelings about police than simply associating them with the concept of protection.

Something else that we didn’t predict -- though maybe we should have -- was our editors’ unanimous hatred of the word “special.” It reminded them of the phrase “special needs” and other euphemisms for their disability. They insisted on replacing “special” whenever it appeared. For example, we had written the sentence, “Special machines are set up at the polling places.” After consulting with us about what made the machines unique, our editors changed the sentence to “Counting machines are set up at the polling places.” They did let us keep the phrase “special election” after we explained that this was a widely-used term for an election that doesn’t happen at the usual time, not just an oversight in our writing.

Working respectfully alongside people with ID

If you want to work with people with ID as reviewers or editors, the first thing you should know is that you are asking for a lot. One of the primary jobs of someone with ID who is reviewing text is to let the authors know when they do not understand something in the text. Asking people to tell you when they do not understand something is asking them to be very vulnerable. Many people don’t like to admit when they do not know something, regardless of disability. This may remind them of times when they were belittled or written off because they did not understand something. Sometimes, when people with ID do not understand something in the same way that non-disabled people do (for example, money or politics), this is used against them in life-changing ways. They may have their right to vote taken away, or be put under a guardianship that they do not want. An essential part of the focus group process is building trust within the group, so that editors can safely share their questions.

We have also learned that focus groups, especially virtual ones, must schedule extra time for group discussions. At our focus groups, editors will often tell their own stories or give us their own thoughts in response to the text we are reading together, even if those stories and thoughts do not lead to text edits. If the risk of this kind of work for people with ID is the vulnerability of admitting you don’t know something, then the reward is being listened to. People who are often unheard in their everyday lives do not just want to edit documents -- they want to be heard.

All of us at ASAN are self-advocates ourselves, and we bring our own expertise to cognitively accessible writing. That isn’t enough to make our plain-language and easy-read resources work. To create truly functional resources, we had to bring in people with ID and ask them to rewrite and restructure a resource until it worked for them. The self-advocacy motto “Nothing about us without us!” is as important in creating accessible documents as it is everywhere else.