For March, we celebrate Developmental Disabilities Awareness month! According to the CDC, about 1 in 6 children in the US are born with one or more developmental disabilities or delays. This is a large part of our population! Most of us know someone with a developmental disability, but how much do we really know about these experiences?
Developmental disabilities (DD) usually refer to physical, learning, language, or behavior impairments. This means that people born with DD might need more time, effort, and accommodation to complete tasks in the same ways that an able-bodied person might. Despite this, people with DD are much more than just their diagnoses. It is important to remember that anyone with a disability is an individual first—not just part of any one group. However, living with disabilities can often come with challenges and stigmas from those outside of the community.
This week, I interviewed one of the adults we support, Rachel! We talked about what it can be like living with a developmental disability, and what people within the community want others to know.
When asked, "what do you like the most about being you?", Rachel replied that she has strengths and social skills that others might not have, which keep life interesting. While it has been frustrating to be stuck inside with the pandemic, she looks forward to going outside more once it warms up, and has a positive attitude about the situation.
I also asked her what she wishes more people knew about developmental disabilities, and here is what she said:
"I’m capable of doing any kind of job that anybody else might do, but I might need some assistance for that job."
Rachel
Rachel talked about previous jobs she has had, and how important it is to accommodate people with disabilities in the workplace. My brief interview with Rachel was eye-opening, and it is so important to communicate openly and with respect rather than avoiding 'uncomfortable' topics.
A great way to educate ourselves and others about developmental disabilities is to learn directly from the words and experiences of people living with them. Picking up one of these recommended books is a stepping stone to learning more about how other people experience the world, how they want others to interact with them, and having larger conversations about ableism. Ableism is the assumption that people are able-bodied, which is often damaging and leads to a lack of accommodations for people with disabilities on a systemic level. Let's start having more of these conversations!
Look for these books at Barnes and Noble or Amazon! Some are even free as Ebooks on Amazon.
"If At Birth You Don't Succeed" by Zach Anner is a comedic yet heartfelt memoir about living with cerebral palsy.
In "The Girl From Aleppo: Nujeen's Escape from War to Freedom", Nujeen Mustafa describes how she fled from Syria to Germany while living with cerebral palsy as a teenager.
In "Strangers Assume My Girlfriend is My Nurse", Shane Burcaw describes his life experiences while living with spinal muscular atrophy in a wheelchair. He explores romance, how people with disabilities are treated by others, and all the wonders of everyday life.
"Disability Visibility: First-Person Stories from the Twenty-First Century" by Alice Wong is a collection of essays written by people with various disabilities. This book celebrates and documents the experiences of living with disabilities.
"A Disability History of the United States" by Kim E. Nielsen centers people with disabilities at the forefront of history. Learn how this community has been shaped over time, and how experiences of people with disabilities intertwine with 'mainstream' U.S. history.
"A Rainbow of Friends" by P.K. Hallinan is a colorfully illustrated book that showcases different experiences and teaches children to celebrate what makes us all unique, but also connected! (3-5 years)
"Lemon the Duck" by Laura Backman tells the true story of a classroom of kids who hatch ducklings. One of the ducklings, Lemon, was born with neurological issues. The children learn how to support Lemon and love him just the way he is! (4-7 years)
"47 Strings: Tessa's Special Code" by Becky Carey talks about how everyone is made up of a special code that makes them who they are. Tessa is born with Down syndrome, and her mother recounts her experiences. This book is a great way for children and siblings to understand other kids with disabilities! (7-9 years)
"What's Inside You Is Inside Me, Too: My Chromosomes Make Me Unique" by Deslie Quinby explains in basic terms how chromosomes make us who we are, and what happens when someone is born with Down syndrome. Learn about what Down syndrome is and how chromosomes make us all unique, while still uniting us. (8-18 years)
About the Author:
Marissa is a graduate student at Illinois State University and has decided to create blogs for Marcfirst in the coming months to build awareness about important topics. Marissa has a background in women’s and gender studies, and uses this to locate high-quality research and understand diverse points of view that she herself can never fully experience.
Disclaimer: The views expressed are Marissa’s and do not necessarily represent the official views of Marcfirst.
Welcome to Lifelong Access.
You may know us as Marcfirst, but we've recently undergone a name change. Why? Because in every phase of life, it’s never a question of if we helped. It’s how we help that truly counts. And how much we helped. Because our clients never outgrow us. And, we never outgrow them. Hence, our new name: Lifelong Access.