Awareness Days Shouldn’t be the Only Days We Talk About Disabilities

amanda

Today is World Down Syndrome Day.

I am going to make a statement that I know is controversial.

People may come at me in the comments. But anyone that knows me knows I am honest, sometimes to a fault.

I hate disability awareness days.

Wait. Before you take your shock and disgust to the comments, let me explain.

I have built my career, my character, who I am and what I stand for, on advocating for those with disabilities. All individuals with disabilities.

Not every disability has an awareness day.

For example, my big brother, Nick, has 4XY chromosome syndrome. You’ve probably never heard of World 4XY Syndrome Day.

That’s because there isn’t one.

But it doesn’t mean that Nick, and others like him, deserve any less celebration.

It has always been my philosophy to take the opportunity of awareness days to teach about inclusion of those different than us, rather than the specifics of a particular disability.

I understand there is power in identifying a special day for families to celebrate their loved ones with Down syndrome. But while we have everyone’s attention, let’s also teach them some universal lessons on inclusion and valuing those different from us.

One day, several years ago, a 16-year-old girl came to Puzzle Pieces, the nonprofit I founded to serve those with disabilities in western Kentucky.

She had just had a baby about six weeks prior to that day and brought with her the newborn and her mom. The doctor told the young mother that her son had characteristics of Down syndrome. Not sure as to what that meant for her son and her, the 16-year-old was desperate for answers… and hope.

Will he live with me forever? Will he go to school? Will people understand him? Will he be able to have a job?

No matter how old the parent is, the questions would have been the same.

Most of our education when it comes to disabilities is either antiquated understandings passed down from previous generations or what society — TV and movies — show us today.

My dream is to flip the script when it comes to our understanding of disabilities. Through early education, I dream that inclusion for those with disabilities will be the norm and not something we fight for.

I dream that, in the future, parents who receive the news that their child has Down syndrome will have the comfort in all their wonders of the possibilities and opportunities for their future.

In order for that to happen, we need to start having conversations with our children about disabilities. At home and in the classroom, children need to hear that those they see as different from themselves are actually not that different at all.

That is why, today, I am launching Owen the Wonderer, a series of children’s books that teaches children it’s OK to be respectfully curious about those with disabilities.

The first book, Owen the Wonderer and the New Kid in Class, centers around a girl with Down syndrome. The main character, Owen, learns that asking questions about his new classmate, McKenzie, is OK and his curiosity leads to a new friendship.

Owen the Wonderer aims to teach our children that those with disabilities want the same things as neurotypical children — friendship, independence, a voice.

Let’s teach our children that inclusion may not be “how can I help,” but instead, “how can I empower?”

Awareness days shouldn’t be the only days that we teach our children about disabilities. While our attention is focused on a particular disability today, make a promise to yourself and your family that, moving forward, you will incorporate lessons about differences every day.

Imagine what the future would look like if we do.

If you want to purchase Owen the Wonderer, and be a part of creating a more inclusive, accepting future, visit my website.

This book will serve as a resource to start necessary, meaningful conversations with your children.

After all, they are who will change the world.

Written by, Amanda Owen

Amanda Owen is a newly-accomplished children’s book author, blogger, podcaster, nonprofit director and lifelong advocate for those with disabilities. Inspired each day by her older brother, Nick, Amanda has dedicated her life’s work to ensuring others with disabilities are included in their communities and live more fulfilled lives. She, along with her husband, Justin, (who is the only person in the world that could both ground and love goal-driven, “vision boarding” Amanda) are the proud parents of two sons, Landon (10) and Layne (7). When she’s not running her nonprofit with a $2.4 million operating budget or supporting her 60+ employees or 167 clients, you can find Amanda at the lake, binge-watching Netflix or looking up inspirational quotes. More than anyone, Amanda understands what it means to fearlessly follow the path God has set out for you. She inspires everyone she meets to dream big, work hard, own their mistakes and learn from them, be yourself, and most of all — laugh! You can follow Amanda at piecesofme.org, FB, Instagram and her Podcast.

Interested in writing for Finding Cooper’s Voice? LEARN MORE

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.

Avatar photo

Kate Swenson

Kate Swenson lives in Minnesota with her husband Jamie, and four children, Cooper, Sawyer, Harbor and Wynnie. Kate launched Finding Cooper's Voice from her couch while her now 11-year-old son Cooper was being diagnosed with autism. Back then it was a place to write. Today it is a living, thriving community of people who want to not only advocate for autism, but also make the world a better place for individuals with disabilities and their families. Her first book, Forever Boy, will be released, April 5, 2022.

Share this post: