Simplified:An upcoming event from local nonprofit Rare by Design aims to start conversations about the importance of representation for people with disabilities and rare diseases. Here’s what you need to know
Why it matters
- Rare by Design is a local nonprofit focused on creating awareness, inclusion and representation for individuals with rare diseases and disabilities. Their annual events include a fashion show and a film festival, but this panel is meant to be a more intimate experience.
- Founder Kendra Gottsleben said she wanted a panel featuring people who have disabilities – both visible and invisible – who could share firsthand what it means to them to be seen, whether that’s in a commercial, on a board, in a leadership role, etc.
- Panelist Kayley Shade recalled being a child and seeing a video game in which one of the characters used a wheelchair. It was one of very few instances in her childhood where she saw someone like her represented in media, and even as an adult, she said it’s “mind boggling” that more people don’t view disabilities as a normal, everyday thing.
“It feels very important to me to show that just because you have a disibility doesn’t make you any different, and people shouldn’t view you differently,” Shade said. “Everyone on the panel has a disability, and they’re great at their job, and I think that will do a lot to show people we have our good abilities.”
Tell me more
The panel will feature Shade, who works as director of media for the Indoor Football League, as well as Young Professionals Network Manager Jaci Pieters, and author Jason Freeman. It’ll be moderated by Vicki Stewart, executive director of Employment Disability Re
Gottsleben said she hopes attendees include people who work in marketing, parents who have kids with disabilities, and anyone who’s open to the conversation
- She also notes that it’s not always intentional for businesses to exclude people with disabilities. Sometimes, especially if they don’t have someone in their life with a disability or rare disease, it’s simply a matter of not thinking about it.
“It’s starting a simple conversation,” Gottsleben said. “We are not telling people what they’re doing wrong. We’re just starting that “aha” moment or, ‘I’ve never thought about it that way.'”
For Pieters, the power of being seen is less about visual representation and more about a general understanding that you might not always know what a person is going through
“The power of being seen is knowing that while you might not see what’s going on, everybody probably has something going on that they’re working through … it doesn’t mean they are worth any less,” she said.
How can I get tickets?
The event will take place 3:30 p.m. to 6 p.m. on Thursday, Sept. 10 at Convolo. You can get tickets here
