Plain Language

By Leah Mapstead

I am a member of the adults with disabilities community. Disabilities come in many different types, such as developmental, intellectual, physical, psychological, and neurological. My disabilities include physical, developmental, and intellectual.

For me, living with disabilities means navigating my life and environments in different ways than an able-bodied person. I have different sensory needs. I often use fidgets to help me focus for longer periods of time, and it takes me longer to think and process everything. Because of my main diagnosis of Prader-Willi syndrome, or PWS for short, I also follow a rigid daily calorie plan and exercise regularly to help me manage my weight. Currently, I’m living independently.

For work, I volunteer with Phoenix Herpetological Sanctuary. I help care for our tortoises. For fun, I partake in two local inclusive theatre companies, Empowered Theater & Arts and Detour Company Theatre. I also enjoy video games, creative writing, reading, socializing, arts & crafts, and building with interlocking building bricks.

To me, advocacy is being able to help others communicate better and helping to ensure necessary accommodations are met. Self-advocacy means I also advocate for myself. One example of my advocacy work was being an actor representative on Detour’s board of directors.

Plain language in advocacy is important to me for many reasons. The first reason is that it allows us to communicate our needs clearly and helps improve our everyday lives. It is also important because it encourages people, places, and communities to become more accessible and inclusive. It even ensures that we get equal resources, healthcare, and rights. Without it, laws like the Americans with Disabilities Act would not exist, nor would developmental disability services and companies that provide care providers.

In the past, I have helped Becca Monteleone, an issue editor for this issue of Impact, review plain-language articles. Some of the projects include news and academic articles, including an academic article about intellectual disability and philosophy. I am looking to make sure that it’s put into terms people with disabilities can understand and that topics are written in a way that is clear and easy for us to read. I read the articles, and as I go, I am checking them for anything that might sound or look confusing or isn’t explained clearly enough. I give suggestions for how we can make it easier to understand or put into terms that are less complicated.

It’s very different getting opinions and experience from someone who doesn’t have disabilities versus someone who lives with disabilities and knows what it’s like. I think all plain language and advocacy should include people with firsthand experience. It is important because it allows us to be included, and it ensures that nothing gets overlooked. I always enjoy working on projects together because I feel included and that I can help others in my community through the work that we do.

Plain language is important because people often underestimate our capabilities and intelligence. They assume that we can't or don’t understand issues in our own communities. This often leads to us getting left out of decisions about our own lives. We get left out of decisions regarding our own healthcare and medical needs. We often don’t get to be included in decisions about our state or country, and even get left out of voting. It can affect our opportunities to find equal employment. It can also make us feel isolated because we’re often put in groups only with other people with disabilities and not given the chance to be in the wider communities. It can often affect our housing situation. We might get put into group homes or hospitals when we want to be in independent living situations.

When people use language that makes topics clearer, as well as easier for us to read and understand, it allows us to be part of discussions and decisions that we are often left out of. This is part of why it is important to speak out against ableist talk and actions. It also shows why it is important that more people, places, and communities take the first steps to being more inclusive and accessible. This way, our efforts will have an outward effect in our communities.