When you’re at work, are you going to be able to use the bathroom if you need to? What about when you go to the park for a walk?
This is something that Marisa Spain, 27, who grew up in Marysville considers before going anywhere. Spain has
Facioscapulohumeral muscular dystrophy (FSH), a progressive hereditary disease that causes muscle weakness in several areas of the body,
and uses a power wheelchair to get around.
“I don't go to places that aren’t guaranteed to have an accessible restroom,” Spain says. “That sounds a little silly if it's not something you've ever encountered. You might think, ‘Of course I'm going to be able to use the restroom if I need to at this place.’ For me, that's not nearly a given.”
Spain, who works as a Policy Research Assistant for the
Office of Disability Affairs in the
City of Detroit, was inspired to raise awareness around experiences like this after speaking with a colleague about how she rates the accessibility of public bathrooms.
Building upon that conversation, Spain decided to launch a YouTube channel in July 2023 called
Disabled in Nature. Through this platform, Spain shares her thoughts and experiences in a fun, engaging, and informative manner. The first in her series titled “
When Nature Calls” featured the accessibility of her bathroom at work, which she rated “8/10; would pee again.”
Spain says bathroom accessibility wasn’t the only topic she wished to share on her channel. In addition, she shares her story about growing up with a progressive disability, life using a power wheelchair, and her struggle to get a van with the goal of advocating for those with disabilities.
“The channel is called
Disabled in Nature because of the two dualities of my personality and the lives that I have lived,” Spain says. “I am really passionate about accessibility, disability advocacy, and inclusion; but I also love being outside. Something that I've found, especially since I started using a wheelchair, is that outdoor spaces are just not as accessible as they could be.”
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"Something that I've found, especially since I started using a wheelchair, is that outdoor spaces are just not as accessible as they could be,” says Marisa Spain.Spain has always enjoyed the outdoors, though. Growing up as an able-bodied child, she says she spent quite a bit of time in nature and went on to receive a Master’s degree in Wildlife Sciences. After discovering that a career in that industry had many challenges for someone who is in a power wheelchair – as many jobs came with qualifications of needing to lift 70 pounds or being able to walk in all terrains – Spain says she pivoted careers and is now a Certified ADA Coordinator.
“I want to maybe start a little side consulting business where people hire me to come evaluate their park project or something,” she says. “Even if you are ADA compliant, the ADA is the floor. It's the bare minimum. There are a lot of things that are not in the ADA that you could easily implement into a project to make it more accessible for everyone.”
Spain has been able to share her knowledge and experience with her parents, Brian and Regina Spain, who own
Enter Stage Right theater company and the Citadel Stage in downtown Port Huron. Spain says her parents have worked hard to promote accessibility at their theater.
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Marisa Spain's parents, Brian and Regina Spain.
For example, since the bathrooms and green rooms are downstairs, Spain says her parents wrote a grant to have a lift installed to make them wheelchair accessible. Additionally, they wrote a grant to install a hearing loop to help those who have hearing aids enjoy the performances, and recently received a grant to bring in an audio descriptive service for the blind and those with low vision.
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Marisa Spain with her family: (From left) Marisa's father Brian Spain, her mother Regina Spain, her brother Wesley Spain, and her husband Aaron Rose.“They’ve done a lot of good things for a lot of people,” Spain says. “I’m really proud of them and the work they do.”
In her video
rating the accessibility of the bathroom at her parents’ theater, Spain gave the bathroom a “9.5/10; 100% would pee again.”
As she continues to grow her YouTube channel, Spain says she hopes it will bring more awareness to the disabled community and their needs.
“One of the important things I want to do is add to the volume of people that are showing, ‘We exist. Think about us. Consider us,’” she says. “I remember living in an able-bodied mindset and I didn't ever have to think about any of these things that I experience now. So, I don't necessarily fault people for not knowing the issues and the struggles that the disabled community goes through. But, I definitely think the more it's out there, the more people might think about it.”
Nature parks aren’t the only example of the outdoors being challenging for those with mobility disabilities to access, though. Simply going around the block can be a challenge, especially during the winter. In fact, Spain says that January 26
was the first day she was able to leave her house in 2024.
“The sidewalks were impassable,” she says. “Of course, this meant I couldn't go out for social outings or daily tasks. I'm lucky to have a husband that can do those daily errands and stuff for me, but it also meant that I couldn't go to work.”
Spain’s job allows for a hybrid work environment; however, on days when others were in the office, she had to work from home.
While accessibility is one important aspect of her YouTube channel, another topic that Spain wants to highlight is how expensive it can be to be disabled. One way she is doing this is by taking viewers through the long journey of getting an accessible van, which has taken two years so far.
“To independently get around in my own vehicle, it is a $106,000 van. Imagine the Porsche I could get for that kind of money,” she says.
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Marisa Spain and her husband Aaron Rose.
Spain says that there are resources for people to apply for assistance with these types of purchases; however, they require extensive self-advocating. She adds that she has a husband who helps their household financially and can help her physically. She also has a travel chair that can get into her vehicle with a lift on the back, although it’s painful, dangerous, and exhausting.
“This has taken two years,” she says. “If I were in a position where I didn't have external financial support, and I wasn't able to work unless I had this equipment, I don't know what I would have done.”
Within the past two years, Spain also got her custom power chair. She says her employer’s insurance covered the cost; however, without that, the chair comes with a price tag of $38,000.
“So, in order for me to just leave my house, it's on the order of $140,000,” she says. “That is an immense economic inequity that disabled people face.”
While awareness and advocacy are important to her, Spain says ultimately she hopes her YouTube channel allows her to be present for those going through disabilities – maybe even the same disability she has.
“The first video I put out on my channel is called “
Being the Person I Needed When I Was Younger,”” she says. “That's really the core of what I hope to accomplish. Even if one person can watch my videos and relate to me, I think it would have it will have all been worth it.”
Learn more or follow Spain’s content at
youtube.com/@DisabledInNature or
instagram.com/disabledinnature.