Written by Briony Smith for The Kit, September 28, 2023, reprinted for Accessibility Tidbits, Melange
When Ardra Shephard started blogging about her MS in 2015, disability representation wasn’t really a thing just yet. And when she first started needing mobility aids and turned to the internet for role models and inspiration, there was little to be found. “I was frustrated by how MS stories were being told. It felt like there was a lack of authenticity, and nobody was telling it like it is,” she says. “I didn’t need to see mountain-climbers and marathon-runners. I needed someone to say, ‘This shit is hard, here’s what you can do about it.’” Today she has created a mini-media empire filled with disability representation; in addition to her popular blog, Tripping On Air, she created and hosts Fashion Dis, a makeover show for folks with disabilities (you can catch it on AMI.ca), and co-hosts the AMI podcast. Oh, and she also has a memoir coming out and a sitcom in development. Here, she shares how she created the change she wanted to see in the world.
“2015 was a time of transition for me. My disease became less invisible when I started to need mobility aids. People started asking things like ‘What’s wrong with you?’ and ‘Why are you walking like that?’ My identity as a singer was being threatened. Even before I was no longer physically able to perform, I stopped getting hired for gigs once I started using a cane. People’s first impression of me was that I was someone to feel sorry for and my sense of self was rattled. That’s when I started my blog.
One of the first posts I wrote was called ‘Honey, I peed the bed.’ I thought, ‘If I’m going to do this, I have to be sure that I can be vulnerable and real and talk about the stuff that doesn’t get talked about.’ Healthcare is so tragically under-resourced that so much of living well with a chronic illness means self-advocacy and hacking it on your own. A lot of blogging is just sharing what I wish someone had told me. Being active in the disability community has made me more empathetic to what others are dealing with. Sharing my experience with MS has empowered me to claim my own narrative, to be able to say to myself and the world, disability isn’t what you think it is.
Then, in 2022, AMI approached me about doing a podcast. So much of disability is shrouded in mystery. As much as I regularly hear mind-blowingly clueless and inappropriate comments and unsolicited advice (‘have you tried kale?’), there are questions that need answering thatpeople are afraid to ask.
Disability pride isn’t about loving MS: It’s about refusing to accept that I have less value because of it.
Frank conversations about MS, chronic illness and disability are normalizing. The things we’re all afraid of are way less scary when we talk about them. When we take away the mystery, we take away the power.
It’s important to create entertainment where people with disabilities can see themselves. For so long disability stories have been told in a way that hasn’t always served the community. Fashion Dis is different from other makeover shows in that all of our makeover participants have a disability, the show has a disabled host and some additional cast and crew also have disabilities. Rather than erase disability from the fashion and beauty space, Fashion Dis acknowledges that the industry has created barriers that people with disabilities face, but also showcases the adaptive and universal designers and brands that have exploded onto the scene in the past few years. It understands that there’s more than one way to be beautiful, cool and stylish—that our differences are what make us interesting, and that fashion belongs to every body. Fashion Dis is different from other disability-centric shows in that we don’t seek to fix anyone. There’s no sad soundtrack or b-roll hospital footage.
There’s this idea that people with disabilities don’t care about style and self-care. Many believe that people with disabilities don’t have the same interest or capacity for romantic relationships, sex and partnerships. We’re often infantilized or thought less capable. While there are lots of misconceptions around disability, representation in the style and self-care space can help correct some of these specific assumptions.
The general public is not yet angry enough about how inaccessible the world is.
Having this type of representation on TV is also important because it can cultivate a sense of disability pride. To me, disability pride isn’t about loving MS: It’s about refusing to accept that I deserve less access or have less value because of it. A collective pride in identity is what allows us to demand change. The general public is not yet angry enough about how inaccessible the world is, if they are even aware of the barriers we face. Our society has a high tolerance for how much we are willing to exclude the disability community and that has to change.
Thankfully, we’re at least moving in the right direction. It’s kind of mind-blowing to witness the evolution of disability representation over the past few years. Social media has levelled the playing field, and I expect we will see more and more mainstream inclusion and representation ahead. It’s no longer about teachable moments and after-school specials, it’s about realizing that disability is different, but that it’s not that different. Disability is just another way to be human.” —As told to Briony Smith