Sarah Tuberty joined us to chat about her life experiences as an occupational therapist, flight attendant, aerialist, and advocate with a congenital limb difference. We were also joined by Able ARTS Work resident artist, Summer Mariotta. Learn about Sarah’s engagement with stigma through her professional, personal, and creative life. This is the second part of a two-part blog post. Read the first post here.
Learn for Life [LFL]: Sarah, I know that you’ve also done other work to help make abilities and disabilities visible. You were a part of the Super-Abled comic anthology. How did you become involved with that?
Sarah: It was really fun. It was hard work. It came from a state of meeting other people who shared a similar experience. The fun thing about the Super-Abled comics was that everyone who was involved in it was a part of the disability community as well. It was just very powerful. Like here we are once again being leaders. We are the ones writing our story and are able to say “this is how we want our story to be written”, and these are the things that are important that we need to be talking about and discussing. It is important that all of the authors have limb differences, so it is important that the limb difference is included in the superhero self. That is something that all of us were friends, sitting down and having a conversation around comic books, around super heroes and around this idea that super heroes who maybe had a disability in their life, but then weren’t disabled in their superhero life just further perpetuates this negative stigma on disability. The idea that of course this isn’t a great body and we need to have like a super abled body. And so it was really important for us to write super heroes that had their differences in there superhero self, that was used as a benefit, versus the “oh, we’re not going to include that at all or that the superhero version of myself doesn’t have this limb difference”. So, it was really an important conversation that needs to happen. That was a fun process. Our lead author and editor, Travis, was working for a comic company and had written a couple of comics before, so it was kind of an easy outlet in that space that we already had those connections in terms of how to build and write comics. He was able to navigate those of us who hadn’t written comics before through the process. It’s really fun working with an artist. I wrote everything, then trying to describe what I want things to look like, to then work with an artist who would then draw all of it, was a really fun and important and powerful process. This is what is really important, having this image, and really making sure that we had a good relationship so that things were positively portrayed. It went really cool!
LFL: It sounds like a really fun process. It is wonderful to see visibility of a diverse community in comic book world. How did you come up with the idea for your story and your character? How was your character development process from the creative side for you?
Sarah: Great questions. I really felt in my occupational therapy curriculum that I had been woken to stigma theory. That was really something that slapped me upside the head in all of these beautiful ways. It felt like this flood and I remember just falling one night. I was like “this is it! These are all the things I have not been able to articulate my whole life”. I had no idea how, I had no words. This was just it. This explained everything. And I love Stigma Theory. I then used it as a foundation for my research project I did for occupational therapy school. Then when it came to creating my story, I wanted to have a limb different artist who was an aerial artist, of course, because circus is amazing and I love that. And that I really liked that my story, I didn’t want to have a “bad guy” or “bad person”, because I don’t really believe in that. I was just trying to think, “how does stigma operate?” and I really liked this idea of a virus. I like that people could be changed. I like this idea of changing instead of defeating and destroying. So in my story, there is this virus that took over this city, it’s called the darkness virus, and it then changed everybody to this hive minded mentality. It was this virus that was the bad thing and this virus that we need to work against, and it wasn’t the individual people. Within this story, two best friends and then this virus takes over. The main character is Chiara, which is light, and her best friend is infected by the virus and the virus is trying to tell everyone to get rid of anyone who doesn’t fit this “perfect” image of a specific body type. So disability isn’t allowed. It goes through sort of a height and weight and all of the stereotypes that we have within American society. What do we value and what do we not value. It is a commentary on that, but then there’s the stigma coming in then trying to eliminate those who did not conform. Chiara is trying to find ways to help people see the light and that this is stigma and it can be rewritten. That it isn’t what is good or beneficial for the community. Those who have been infected by the community don’t see colors or joy or art or any other good things. I really like that in a way with education and awareness we can challenge what it is and really work to undo and rewrite stigma, rewrite the narrative, so that we can be inclusive of all of us and all the places we come from, and all of the different experiences that we have, and see how much more beautiful the world is when we are all here. It just brings together all of the things I really care about.
LFL: It’s a wonderful collaboration of ideas and recognizing people. I love that you didn’t identify a person as a “bad guy”. I think that’s often what society does: these are the people experiencing stigma and this is the perpetrator. Rather you are just saying that these are roles that have been out there and we need to change it. I like your creative way of viewing it from an occupational therapy lens.
Sarah: I like that it helps bring accountability and awareness of responsibility to all of us thinking about what is the messaging that I was taught when I was younger and is that still the messaging that serves me and my community, and how can I work to intentionally seek out the true narrative? This is what I want to communicate. So, yeah, it puts that onus and responsibility on us.
LFL: You are definitely right, even if someone has stigma towards you, you aren’t free from it yourself; you could be stigmatizing someone else. I love that concept.
Summer: How did you get your comic published?
Sarah: We went through a small publishing company called Accidental Aliens that has publishing rights. It is an organization that Travis was connected with and he had his comic published with them before. And it was really cool to be able to talk with them and use that as a connection. I know that they are looking to publish art and local artists and create inclusive content. And he, Travis, really took the lead on a lot of the publishing. I do know that there was a lot of making sure we followed formatting guidelines, checking layouts so that it would come out appropriately. We had tons of conversations about the order of the stories, what the cover was going to look like.
Summer: That sounds interesting
LFL: Thank you for explaining the process. You have mentioned your aerial arts, which is your other creative outlet. How did you get into aerial?
Sarah: I was a flight attendant for four years prior to graduate school and I am a very kinesthetic person, which is also why I like OT so I won’t be in an office. I need to move and talk with people. So, I knew that going from roaming around the world and being the lead on airplanes to sitting in classrooms and listening to PowerPoints was going to be very tough for me and I needed to have classes that were hard enough to not let my brain wander. I needed to just focus on my body doing the same. I had looked into yoga classes or Pilates classes and those are things I have done before, then a friend of mind suggested aerial arts. My university offered aerial classes in their rec department. I got discounted classes and could take them as a student. I absolutely loved it because it was exactly what I needed. I’m not great at going to the gym, I need to have an activity, and it’s also very easy to be like “oh, I have all these papers to write, I don’t have time”. I knew for myself that my body needed to move and be challenged. And I loved that it was really hard and I couldn’t think about anything else except how am I going to convince my body that it should climb up here. I just thought it was so fun and I loved the community. All the circus communities that I’ve taken aerial arts classes at since then have just been so supportive and kind. I took classes all through grad school program and in my final year I did my first student showcase. I was on stage by myself and I come from a dance background, and I did ballet and all those things, so I was on stage a lot as a child, but never by myself. This was the first time I was on stage by myself for a dance movement activity. It was really powerful for me to have people look at me and have people watch my hand. That was an incredibly empowering moment just for me to begin to change that narrative within myself. I was asking people to look at me, when at that point I had spent 20 years trying to hide from people. It is also just so much fun! I feel so happy and then to see my progression, and I love that. I love that it’s a body and it’s an apparatus and there’s an infinite number of ways that can happen. And there’s some things, okay, I may never be able to do, but there’s still a significant amount of movement and creativity that can happen with any body and apparatus.
LFL: I love that you mention the aerial community. Because that’s very true, it differs to a typical gym setting. Everyone keeps each other safe; everyone is looking out for each other. How was it for you adapting because there is a lot of hand strength involved in aerial arts. How was it learning to trust your hands doing aerial?
Sarah: That’s a great question. I also love the trust there. I’m going to take it this back to my earlier comment about my hands. I would not give my left hand as many jobs or tasks because I didn’t trust it, so it has been a fun process. I had very little upper body strength when I started. It was frustrating because my instructors, as amazing as they are, didn’t have a ton of experience on how to be able to adapt things for me. So, there was a lot of just how people within the disabled community manage lots of things: you watch how an abled body person does it and you try that and if it doesn’t work you try all these different types of strategies until you find what will work. But that may be a four-week process where now my peers have already learned that first skill and are onto another. So watching people that I started together and at similar skills sets, they were able to accelerate and do things at a higher rate, whereas I was still trying to figure out to do an invert from the ground. That was something that took me a very long time and was a little discouraging. I did transfer between the different apparatuses, so I started in the silks, which was very hard, then I went on to the trapeze and the lyra, which I could do more there and I got a little bit stronger. I learned different strategies there, how the people were taught on the lyra and trapeze, and I found would transfer over and help me on the silks. It was nice to be able to go back and forth between them. It was fun to discover how cool my elbow is. I use my elbow a lot in my daily activities. I carry lots of things in my elbow, all my groceries will be in my elbow, because my right hand is opening up doors. So, I am really good at using my elbow and I can hold my entire body weight on my elbow, like no problems. People who typically use the world with their hands, find the elbow incredibly uncomfortable. That was really fun to find different ways that I can move my body and that my elbow is a really great space. It’s a really fun challenge.
LFL: It sounds like you have found very positive solutions. I never thought about the elbow becoming a lot stronger. That’s a really clever adaptation. How was it doing your first solo performance?
Sarah: It was amazing and terrifying and fun all at the same time. I felt like it was such a cool tribute to who I was becoming. The title of my piece was called “Woman Undeniable” in the fact that I had just turned 28, so then there were the questions: at what point are we a woman, at what point are we confident, at what point do these things start happening? I took a class that was just performance development. So all of us that took the class did this performance together. It was really fun to build it with the other peers and to work on it myself. I had ownership. It wasn’t something given to me; it was something I created through this whole process. I was thinking a lot about what did this mean, what did the song mean, what did I want to convey, what is the importance? And thinking a lot about that. I am tired of being ashamed of who I am and I want to be confident in myself and really free myself from stigma and take ownership of what it means to be a woman and feel like I’m an adult and not anybody’s child. Even coming out of school, I was in my late 20s, but you are still a student and you are still talked to in that way. So I was asking all these questions and building something I had not done before. And showing my friends and have them cheer me on during the process was cool, and feeling confident enough to open up to them and be a part of this relationship. That was a big moment for me and just something to be really proud of.
LFL: It is a huge moment. It sounds like all of your experiences, professionalism, advocacy, creativity – it’s really interesting talking to you – it all ties in like a cycle, which is great because it shows an equilibrium in your life story. It’s really beautiful to hear and talk to you.
Summer: When I was listening to your story about your, I forgot what it’s called [congenital hand difference], I don’t really like it when people judge other people because of how they look. It’s because when I used to draw, my teacher never like my drawings. She said it looked too dark, but my dad told me to never stop drawing.
Sarah: Absolutely. I feel that when we’re judged solely on appearance that it’s not accurate or fair and it really limits what we know and what we see. When we can truly see people for all the beautiful elements that we are, we are much better people and a much better society as a result of that. I have also found that just continuing with the things that are truly yourself, and I’ve done all of these different projects, because coming back to the core of stigmas, that so much of my work is around that aspect. If I started to do work that didn’t feel right to myself or wasn’t for me and was for someone else, then it just isn’t good. It isn’t authentic for me. I feel like we are our best selves and our best storytellers when we do our best authentic work. Do all of the work that feeds your soul.
LFL: Sarah, it has been wonderful learning about you, your work, creativity, and advocacy. Thank you so much for chatting with us. It was wonderful meeting you, and I can’t wait to connect again in the future.
Sarah: Yes, Thank you too!
Sarah Tuberty, OTD, OTR/L, is an occupational therapist and flight attendant in profession, but also creatively expresses herself through aerial arts and her participation in the comic anthology Super-Abled. Sarah has a congenital limb difference and aims to challenge stigma and rewrite the disability narrative through her everyday life and other activities like her podcast, Disarming Disability, her YouTube Channel Sarah Living Life, and her blog on Instagram, Aerials and Airplanes, and her personal website SarahTuberty.com.