Akron YouTuber “Daniellability” shows what it’s like living with spina bifida

Reporting, writing and photos by Abbey Marshall

Danielle Marx hopes that on her little corner of YouTube, she can be an inspiration to others with spina bifida.

That’s why the Akronite started her channel, Daniellability, in 2018: to provide realistic online representation to kids who might only see themselves represented in simplified media tropes.

“A lot of representation that’s out there is not necessarily what people with disabilities want to see,” Danielle, 31, says. “The media shows us as inspiring or that our goal is to be able to not have a disability, and that’s not always the case. I’m very content with who I am and my life and it’s not necessarily my goal to be able to walk.”

Instead, she wants to give her viewers a realistic sense of what it’s like living with spina bifida, a rare condition that occurs when the spine and spinal cord don’t form properly at birth. Her more than 1,700 subscribers tune in to watch her weekly lifestyle vlogs with activities such as driving, swimming and grocery shopping with her wheelchair.

“I wanted to have a place for people with disabilities to go, whether they’re new to having a disability, learning how to do different things or if they’re young and growing up and looking for someone to look up to,” she says. “I didn’t have a ton of those kinds of things when I was growing up.”

Danielle also wants her channel to serve as an educational tool for parents of children with disabilities.

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“A lot of times when parents are given the news that their child may be born with a disability, they’re kind of given worst-case scenarios,” she says. “I want to show them the other side: that if given the right tools, your kid can thrive and have great opportunities and live a really independent and full life.”

But she doesn’t want her channel to just be a landing page for people with disabilities. She also wants to educate people without disabilities about what life is like with a wheelchair.

“A lot of times people are afraid to ask questions. They don’t know how to say things the right way or that they’ll be offensive or that kind of thing,” she says. “To me, you’re never going to learn unless you’re able to ask questions. If they’re afraid to ask questions, I may as well answer it before they have to ask and hopefully be a resource for people to realize it’s not something to be scared of or shy away from and to think about those things.”

In addition to lifestyle videos, she also uploads informative crash courses on topics such as the American Disabilities Act and highlights accessibility in travel and everyday life.

“If it’s not something that you deal with on a daily basis, you’re not thinking about how half the restaurants you go to aren’t accessible, or when you go down the sidewalk, you don’t pay attention to the cracks or the different curbs because you don’t have to,” Danielle says. “Giving people an insight into what that life is like for us is important.”

A longtime YouTube viewer and art school graduate, Danielle attributes her creative flair to her drawing and painting background. The rest of her filming and editing skills were self-taught.

In her two years making videos, Danielle says her favorite part is community-building.

“I love interacting with different people and people I may never meet in person and talking to them over Instagram,” she says. “The majority of my audience are people with disabilities, and I would love to see it expand to people who don’t have disabilities. Unless it’s something you have right in front of you you’re not actively looking for that representation. If you’re not you don’t notice it’s missing.”

As she hopes to continue to grow her audience, she also has plans for future videos after the pandemic.

“I would love to do more as far as travel and show people opportunities of just living life to the fullest,” Danielle says. “I want to show people with and without disabilities we can live full and exciting and thriving lives that are full of opportunities, but then also showing how they could be improved by accessibility. I would love to travel to different cities and show the planning process and how to get around.”

Danielle’s cheery disposition, kind words of encouragement and bright smile online are a reflection of who she is in real life: an optimistic person looking to uplift others. 

“A lot of people think someone who has a disability is going to be sad and not loving life and that kind of thing and I want to show that’s not always the case and we can have a good attitude and be happy with life and accepting of different challenges,” she says. “We all have struggles and things we have to overcome. To me, a disability isn’t any different. It’s just another way of experiencing the world.”

Visit Danielle’s YouTube channel here

Abbey Marshall covers economic development for The Devil Strip via Report for America. Reach her at abbey@thedevilstrip.com.

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