Since starting my "Passion Project" in the beginning of the year, I was blown away by the overwhelming support from the community on the project. I was simply wanting to meet and photograph amazing women in our community and it turns out, others wanted to meet them too. KELOLAND news ended up highlighting Ms. Sanna's blog and it can be found here:
"Strong Support for the Women of Sioux Falls" by Max Hofer
Now unto this next amazing woman whom I ended up hearing about at the Embe's Tribute to Women event from a dear friend. I was told that this woman was a leader in her community and had a passion to educate others about the significance of neuromuscular diseases. After talking and connecting with her, I realized that all this was true and then some.
Tana is an amazing woman in Sioux Falls who is a National Ambassador for the Muscular Dystrophy Association, member of the Disability Awareness Commission for the City of Sioux Falls and blogger for "That Girl in the Wheelchair" where she shares and bares both the fears and joys of navigating life after being diagnosed with FSH Muscular Dystrophy. Tana is also an art and fashion lover which is why we just HAD to do her shoot in the blooming art scene that is downtown Sioux Falls where she currently resides. So without furthur ado, I introduce to you, Tana Noel Zwart.
Tell us about yourself? Where are you from? Can you describe your family?
I am a Minnesota girl. I grew up in a small, Dutch town just across the South Dakota border. Sioux Falls was the "big city" growing up. I knew since I was little that I was going to live here at some point, and have always loved downtown. It's been really fun to see how things have evolved, even in just the 5 years that I've been here. Downtown is kind of its own little community within a city. I think that's what I love about it.
I grew up in a close-knit family. All of my cousins are similar in age, and my grandparents on both sides were a huge part of my upbringing. I have some family here in South Dakota, but most of them live in Edgerton; including my parents and younger brother. My brother is married and they have a little boy (with a girl on the way). Being an aunt is rad. We’re a big baseball family, so catching a few ballgames in the summer is pretty run-of-the-mill. We love spending time at the family lake house, as well.
I am very people-oriented, and really prioritize my relationships. Any time I can get a bunch of my family and friends in the same room to just be together, that's definitely life's sweet spot for me. Making memories is one of my favorite things.
I have a black cat, named Ülli, who is pretty much the feline embodiment of punk rock. I refuse to get a smartphone. I like to think it makes me cool and nonconformist or something, but I think it really just makes me a stubborn 80-year-old man. I love music, going to concerts, culture, traveling, the outdoors and anything arts oriented. I am a fashion geek. It’s probably my favorite form of art and expression.
What are your jobs? How are you involved in the community?
I used to be the Media Manager for an arts nonprofit downtown, JAM Art & Supplies. It was such an amazing, creatively fueled, community-based place. I was extremely sad to see it close in February. It was an asset to Sioux Falls. We have a fantastic art scene here that I was really able to delve into through JAM, so I hope to find something arts oriented again (nonprofit would be an added bonus). In the meantime, I have been freelance media managing. I don't mind it, but I'm finding that I like to have a primary focus, as well as consistency.
Community involvement is very important to me. I have been on the Disability Awareness Commission for the city of Sioux Falls for almost three years. It's been really eye-opening to learn about the range of issues within the disabled community, as well as participate in some projects. We put on a wonderful art show at the Museum of Visual Materials in the spring, called ArtAbility. It showcases how creativity has no limits. More recently, we have been working on a project with the hopes of encouraging people to think twice about using accessible parking spaces if they don't need them. I also sit on an advisory committee for the Center for Disabilities. I like learning new things, and those have been wonderful opportunities.
I have been involved with the Muscular Dystrophy Association for most of my life. I'm on planning committees for fundraising events here in Sioux Falls, and recently accepted the role of National Ambassador. It's overwhelming, and exciting. I will be doing some traveling, speaking, writing and advocating on behalf of MDA and families with all forms of muscle disease, including ALS. Now is an especially exciting time to be in this role, with such HUGE strides being made toward cures and treatments.
Tell us about your blog? "That Girl in the Wheelchair"
I was diagnosed with FSH Muscular Dystrophy when I was 7. FSH stands for facioscapulohumeral, which basically means it affects the facial muscles and upper arms. For me, I eventually saw progression into most of my muscles. I don't usually talk too in-depth about the really nitty-gritty parts of my disease. My blog is kind of my outlet for that. There is seriousness, there's humor. It tends to be pretty candid and matter-of-fact. I've been terrible about keeping up with it these days, though. I need to be more diligent about writing. I've always been so impressed by people whose words just eloquently flow out of them. That has never been the case for me. Writing takes work. (Or I'm just too much of a perfectionist. ha)
What are your biggest hardships that you have had to overcome?
Living with muscle disease has definitely been the biggest hardship. It’s not something I like to readily admit, because I think it has a lot to do with perspective and attitude. For me the reward has always been 10 times greater than the struggle. I think that’s what pushes me, and what fuels me on the harder days. No grit, no pearl, right?
My identity was so much in my physical abilities growing up. I was good at athletics, was always on my roller blades or at the pool, I loved hip hop dancing. I used to think that losing those things and my ability to walk was the worst part, but later into my 20s it really started affecting my energy levels. That's probably been the most difficult. My body just doesn’t keep up with me. I definitely value responsibility and hard work, and find purpose in it. It was really taxing to my self-worth in the past because of that. I can’t work full-time, and I love working. Admitting when my body needs to rest (and actually doing it) was something that took me a long time to adjust to. Even now when I rest I am bored out of my mind sometimes. I can usually think of 100 things I'd rather be doing.
It was around sophomore year of college that there was this complete shift in how I viewed my disease, my body, and myself in general. I was reading a book called Shine, and in one of the first paragraphs was the line, “It’s not about you.” It was the most liberating thing. It was pretty much permission to just get the heck over myself, already. I needed that. It wasn’t about the fact that my muscles were burning, it wasn’t about whether I couldn’t run or dance anymore, it wasn’t about how different I looked or every weird compensation I make just to do everyday things. That was all secondary. What mattered was what I did with it, and how I used it. It’s about letting people know that they’re not alone...it’s about loving people...living outward instead of inward. Those simple four words totally changed the game for me.
What is your biggest passion and how do you want to get that across to the community?
I think it’s really important to use your experiences to empower others no matter how big your platform is, or how large your audience. Whether it’s just the one person standing next to you who needs to hear what you have to say, or an audience of thousands of people...at the end of the day, the numbers never matter. What matters is that you’re doing what you can with with what you’ve got. We all have a voice, and we all have something to give.
I strongly believe in embracing the things that make us different. That is where our strengths lie. We need to stop finding ways to fit in, and cultivate the ways we stand out. If I leave this world with a few more people believing in who they are, and what they're capable of, that'll do.
Any future plans?
Honestly, getting married, having a family, and finding a house sounds pretty nice. I’ve really enjoyed being single. It has allowed me to do a lot of great things, and I've gotten to know myself really well because of it, but I’m kind of ready for that chapter now.
I have been very inspired by the movement of inclusivity in fashion, and how it has started to embrace all bodies, particularly differently abled bodies (I mean, FINALLY). Fashion is all about uniqueness and individuality, it’s about time it started embracing a demographic defined by it’s physically unique individuals. I hope to get involved in that realm of things somewhere down the line. It'll just be about finding the right opportunity.
What is your favorite quote?
"Beauty isn't how you look, it's how you love." Love big.
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