When it comes to people with disabilities, the truth is that no one can tell our stories like us. We know what it is like to live–and thrive!– with our disabilities. We know what kinds of accommodations we need and the areas in our lives and communities where accessibility is a constant challenge. We know what kinds of interventions and policies we’d like to see from our elected leaders, employers, community leaders, those who work in media, and anyone else whose decisions directly impact our lives.
The fact is, the majority of the people who have the power to create change and make the world a more accessible place for people with disabilities are people who do not have a disability themselves. On top of that, even the most well-meaning people have their own biases and assumptions about people with disabilities. Many of them have been brought up believing, or at least being exposed to, common misconceptions about disability. This can lead to decisions being made about public policy, hiring, drafting a plan for a new city park, or portraying a character with a disability on a popular TV show without consulting a single person with a disability.
When people with disabilities and their families tell their stories, they’re seeking to create understanding and inspire empathy, not pity. These stories are incredibly powerful and can mean the difference between someone who may have a vague awareness of disability issues into an ally who takes action.
Take the Majchrzak family, for example, who shared their story with the Detroit Free Press of their 8-year-old daughter Delaney getting her first bike. Delaney has tetrasomy 9p, a rare genetic condition. Delaney can’t walk, but her new specially adapted bike allows her to be outside playing with her older brothers in a way that was not possible before. While the article does acknowledge the family’s struggles, the heart of the story is joy. "We love her very much, we love her the way she is," Delaney’s mother Deanna told the Free Press.
In July, Alex Klaus, an intern for Chalkbeat Detroit, shared her story of struggling in school with undiagnosed ADHD and how things turned around for her once she had a diagnosis and was able to receive the accommodations she needed to succeed. “I hope my story reminds students with disabilities what they are capable of and that they are deserving of the support they need to thrive,” she wrote. Since ADHD is not a visible disability and is widely misunderstood, personal stories, like the one Klaus shared, are so important.
Then there’s actor Adam Pearson who has neurofibromatosis type 1, which has caused facial disfigurement. “I don’t think there are enough disabled voices feeding into the creative process,” he said. Pearson’s disability is very evident and he was bullied while growing up. He’s currently working on A Different Man, a film that he hopes to destigmatize facial disfigurement. “If what I’m doing now means that younger Adam Pearsons don’t have to walk through hell in school or that someone who looks like me can walk into a pub, and it isn’t a big deal, then I’ve accomplished my goal.”
To tell a story is not simply to convey information, it is to build community and strengthen bonds. In order to counter the myth that people with disabilities cannot be independent, don’t see a future for themselves, and live limited lives, there can never be too many stories of people with disabilities who have agency, who have hopes and dreams for the future, who are living joyful and fulfilling lives.
One way you can tell your story is to share it via the Disability Network Southwest Michigan’s #DWord campaign, which “aims to change the way our current culture views the word disability.”
People with disabilities are not a monolith. They are diverse in their disabilities, backgrounds, culture, beliefs, religions, and identities. There is no one-size-fits-all approach to accessibility, which only makes telling individual stories that much more important. The best way to spur action is to touch someone’s heart, and the best way to do that is to tell a story from one’s own.