Since Kristen Aguirre suffered a stroke in 2019 at age 31, disability has become part of her identity.
“Suddenly, my life changed,” she said. “My entire left side became paralyzed, but through rehabilitation and the help of my doctors, I was able to regain most of my mobility, although my left hand and arm are still partially paralyzed.”
Kristen Aguirre
Aguirre, the new communications and outreach manager for the Disability Network of Southwest Michigan (DNSWM), has used her own experience to create the organization’s new #DWord campaign, which aims to reframe the cultural perception of the word “disability.”
The campaign encourages the use of “disability” rather than terms such as “special needs,” “disabled,” or “differently abled,” which are seen as terms that reinforce ableism and exclude true inclusion. With more than 42.5 million Americans living with a disability, the campaign aims to promote “disability pride” and view disability as a form of diversity.
“I was thrown into the world of disabilities,” said Aguirre, whose sister has the brain disorder Dandy-Walker syndrome. “I know I’m disabled, but that doesn’t mean I can’t do something. That was my mindset.”
Aguirre, a former television news anchor and reporter, left journalism to spend more time with her family, and is expecting her first child this month.
“I’ve heard the words special needs and handicap, but to me that sounds like sugar coat. Because having a disability makes people feel insecure,” she says, “but we don’t feel insecure.”
Challenging Prejudice
The Americans with Disabilities Act, signed into law by President George H.W. Bush on July 26, 1990, marked a major milestone in protecting the rights of people with disabilities. However, stigma surrounding disability persists, which the #DWord campaign aims to combat.
“DNSWM’s philosophy is to see disability simply as a diversity, just like being female, short, Latina, etc. Disability is not a good or bad thing, it just exists,” said Yvonne Fleener, DNSWM president and CEO. “We welcome this campaign as an effort to reclaim the word ‘disability’ and educate the community about the pride that surrounds people with disabilities.”
Fleener, who has ADHD, stressed the importance of recognizing one’s disability as part of one’s identity.
“Long before I got this job, I decided to tell my boss about my disability, and he said, ‘It’s okay, but don’t tell anyone, because no one will respect you anymore,'” Fleener recalls. “Since I started working at Disability Network, I’ve felt really good about being able to talk about my disability again.”
She wants to change how people think about the word disability and help people know that it’s okay to talk about it.
“I’ve found that the more I’ve been open about what’s going on with me, the more other people have been open about their experiences. I’ve had people who say they’re not disabled tell me how they’ve had a learning disability and struggled in school their whole life,” Fleener says. “Because they’ve been taught that it’s a bad thing and not something to talk about. I do see that changing and I hope this campaign will help with that.”
A form of diversity
Amanda Lynes, executive director of Dutch disability network Lakeshore, is helping to spread the organization’s campaign through social media posts and T-shirts.
Before her son, who has Down syndrome and autism, was born, she also struggled to find the right words to use.
“Most people think ‘special needs’ is the preferred term, but people with disabilities want to use the word ‘disability’ as their own term,” she says.
The #DWord campaign will run throughout July, which is Disability Pride Month, and DNSWM encourages everyone to use the hashtag to spread the message.
“We see disability as a form of diversity,” Aguirre says, “and disability is who I am, and our goal is to spread that message and increase accessibility and inclusivity within our community and beyond.”
Fleener believes changing language is the first step to changing attitudes.
“You may not know that someone has a disability, but given the size of our community and the fact that we involve people of all ages, genders and races, disability is part of our identity,” Fleener says.
“We want to change how people think about the word disability and let people know that it’s okay to talk about it and to have a disability. Not only is it okay, it’s a good thing. My disability certainly gives me variety. Without my disability I would be a different person.”
This article is part of a multiyear series, “Disability Inclusion,” exploring the growing state of West Michigan’s disability community. The series is made possible in partnership with the West Michigan Independent Living Centers organization.