Rewriting the Narrative with Sarah Tuberty, Part One: Within Ourselves
Updated: Apr 25
Sarah Tuberty joined us at Learn for Life 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 in this two-part blog post. Read part two here.
Learn for Life [LFL]: Welcome Sarah! Thank you for being willing to join us today and have the opportunity to chat. To start off, would you tell us a bit about you?
Sarah: Hi, I’m Sarah. I was born with and have a congenital limb difference. My hand looks the way that it does due to an event that happened prior to my birth. I don’t know why or how that happened. The best research as of right now suggests that there was likely a blood clot or obstruction to my subclavian artery when I was eight weeks into development that just did not provide adequate blood supply to my arm as it was developing. So, the theory is that I never had fingers; my hand just didn’t develop them. Whereas other theories that I encountered early on in my life is that I had fingers and that something happened to them, that there was some type of injury in utero that then caused my hand to look the way that it does. I think that’s the important distinction as I’ve learned about disability, disability history and culture, and stigmas around disability is the concept that people are “supposed” to be born a specific way and thus there must have been something that stopped or injured that, versus, that somebody could be born with a disability and that just be the way that they are made. So, I think that’s important since that was the initial theory, the thought of “How can this be possible that she doesn’t have fingers to begin with?” and I’ve thought that a lot, even in college as I worked with different professors. Regardless, I beebopped along and I was an incredibly outgoing kid. I changed schools when I was in the third grade. I was the new girl in a pre-existing social structure in this smaller school and eight years old is when kids are really beginning to understand who they are and how they sense the world around them. Typically, children who do have differences at first will face this crisis at eight, so I encountered that crisis in addition to just being the new student at a new school. I became incredibly insecure and was very much ashamed of my hand for a long time. I would hide it and did not like talking about it. I did not like associating myself with it. I felt a lot of pressure to everyone around me that I was “normal”. I took on all of the internalized ableism. I went to graduate school in 2016 to become an Occupational Therapist and I really became introduced to disability themes and concepts and just felt so much of that experience is my experience. Then learning that there’s all of these people in the world that are ashamed of themselves because of disability. So a lot of the work and things I care about have really guided me and inputted me into positions where I want to help create positive messaging around disability. All of the things that allow us to express ourselves, so we can be able to be leaders in our own fields and organizations versus being dependent on what other people think is best. That’s what I care a lot about and have intentionally stopped hiding myself and have put myself on stage in the aerial arts world in using my disability to tell a story and narrative to really challenge what we think disability truly is and what we think disability can do. So that is sort of the big trends of what I care about.
LFL: Hearing you talk, you’ve done a lot that’s amazing and impactful. What inspired you to go into Occupational Therapy? You said that you weren’t sure about ableism and you didn’t know about positivity and the community until you got to college. So, what inspired you to start that journey?
Sarah: I was volunteering at a summer camp that was affiliated with the hospital I went to as a child. They have a summer camp specifically for kids with congenital limb differences called “Camp Winning Hands”. I had volunteered for the camp and started doing programming around that. There was this moment at camp where this teen was trying to figure out how to put up her hair on her own, but her arm anatomy made it a little bit difficult for her to bring her hair up back behind her head and navigate the ponytail holder. So, we sat down. I showed her how I do it and we went through several different strategies and I just thought that was the coolest thing. I then became introduced to Occupational Therapy through my volunteer work at Shriner’s Hospital where I was a patient, and that’s where I encountered the word “OT” [Occupational Therapy/Therapist] and I really liked it. So I come from a science background and I liked that it continued on through the sciences and that we were being creative. I liked that those were required aspects of the job and that we worked with people on the things they cared about. We helped them do what they wanted to do, and need to do throughout our lives. I felt that a lot of those qualities very much fell in line with what I care about.
LFL: OT is definitely a multifaceted profession. It seems like a fun, creative field. What’s one of your aspects of being an Occupational Therapist?
Sarah: Good Question. Very true story, I graduated and got my license March of 2020, so jobs really fell apart in that space and it has been tough to actually get a job as an OT. Right now, I am working per diem at Shriner’s Hospital in Philadelphia, but it’s only a couple days a month, which is tough. I'd like to be more of a full-time position, but I do know that on my clinical placements (and that was before Covid had happened) I really loved that my hand was a way to connect with people in a manner I had never experienced before. I a lot of my life, navigating jobs, I would have to explain myself or prove myself. Particularly in being a flight attendant, people look at me as if thinking how on earth can I keep them safe, and trying to assure them that I knew how to open the doors and put on the masks. So, there’s this extra layer of wanting to prove myself in conversations, but it came surprisingly really beautiful as a way that I can connect with people and that people were so much more willing to engage in a relationship and share their true thoughts and feelings. I was doing one of my clinical placements and there was a gentleman who needed to get a hip replacement and we worked together on adaptive strategies to make sure that he kept his hip precautions after the surgery. He gave me a big hug and was like: “You know what? I was afraid to tell my family that I needed this hip replacement because I didn’t want them to think less of me or want them to think that I’m getting old and disabled.”, particularly because his job has such a heavy stigma on strength and masculinity. I just thought that it was so cool that we could have that relationship together. We were able to explore that it’s okay to need support, but that doesn’t make us any less worthy.
LFL: That’s definitely a way to flip the narrative on the way people view disabilities. Would you say that your congenital hand difference has been beneficial to you as an Occupational Therapist?
Sarah: Yes, I would say so for that matter. There are, of course, challenges within a workplace setting, but I also think and truly believe that it’s important for disability communities and their members to be in places of leadership. So, the more healthcare providers that are also a part of the disability community is huge and will help transform how we understand and provide care. It becomes less of an “us versus them” and more about how we are all helping each other. I am definitely a huge advocate for wanting to get more people with disabilities everywhere.
LFL: That’s a great point. Do you have a specialization as an occupational therapist, or since you recently graduated before the pandemic, do you have a desire to go into a specialization?
Sarah: I definitely see myself more in pediatrics and with kids with physical disabilities, focusing on hospital and acute care settings, because that is where my background and my heart is. Those are things that are very intuitive for more. I’m even considering going back and getting my PhD, which is only a couple more years of school to really understand and learn more about the tools we can use to help support our kids when they hit that eight-year old mark, to help them maintain self-esteem. In with medical literature right now, there’s a lot of talk about the psycho-social impact of being physically different or disabled, but a lot of it barely scratches the surface. I think that’s just a lack of funding and I really feels that all of the movements that were happening last year have given such power to really wanting to understand what social structures are, really looking into what is inclusion. Even now I am able to look up funding that exists and it looks like there is more space to fund literature that is looking at the social impacts of what this means. I would love to be working in that space, whether I do get a PhD or not, but really looking into how can we support our kids and our families that do have these differences. This way they don’t have to feel such a weight of stigma and experience the crash of self-esteem. I know I definitely drifted in the space where I felt unworthy for 20 years, which is a really long time and incredibly exhausting. I am currently writing a book with a hand surgeon to be a parent resource, an expansion of my graduate school research project. The research in grad school was to build an online resource so parents with kids with congenital limb differences could look at lots of different things, such as potentially what they could be encountering with their child. This book just does a deep dive on all of those topics a little bit further. I’m excited for that to come out; it’s a lot of work, but I’m excited.
LFL: That’s sounds like you have a lot of really great plans for the future. I mean, there is a wave of change that we can feel in the disability community right now. It’s definitely something in our non-profit even that we’ve felt within the movement. I noticed that you used the phrases “difference” and “disability” interchangeably. I wanted to ask about your verbiage and if there’s a preference or why you use both terms.
Sarah: I will use difference, I will use disability, I will use person-first, and I use ability-first. That’s just from the different conversations I have had, from different things I’ve read, from different groups. It seems not one of them is preferred over the other. I can see the arguments for both person- and ability-first. One of them doesn’t make more sense to me than others. There are huge advocates in the community for both types of terminologies and I want to be respectful of both of those communities, or all four. I definitely identify within the disability community.
LFL: I have heard that there is a discrepancy between person-first and identity-first and I hadn’t heard “difference” versus “disability” as much. I know you work also a flight attendant and you’ve mentioned that you faced more discrimination as a flight attendant than an occupational therapist. What types of difficulties have you faced as a flight attendant?
Sarah: Yes, I definitely felt more discrimination being a flight attendant, even from other flight attendants that I worked with. They would ask me how I got the job, if I was able to do something, sometimes even the thought that I wasn’t able to push the cart or get the cart set up. When we set up the beverage carts, I’ve got big trays of soda cans that I need to be able to schlepp around, so sometimes having assistance with that will cause other flight attendants to get frustrated with me. Or there’s the constant question-asking. Why do I need to explain myself continuously and then feel that I need to make others feel okay with me? I think that flight attendants themselves have this stigma of being very classy and pretty people, so there’s this idea that flight attendants are perfect. Then having somebody who is visibly “imperfect” really challenges the stigma on who flight attendants are. And passengers sometimes ask questions. When I hand out drink to people, I hold it flat on my hand, I’m not grasping the cup. When I first started working as a flight attendant, I felt that I didn’t want my passengers to be exposed to my hand because I learned early on that this was something people didn’t like. I would not use my left hand. I would just be very slow on the cart, which then made it frustrating for my coworker because they would have to do more at the same time. A couple of years in when I started occupational therapy studies, I continued to work as a flight attendant during the summers, which was great, I then discovered that I would go faster if I passed people drinks with my left hand. When I started doing that, passengers would assume I was going to spill on them. They would be very startled when the saw the cup balanced on my hand, and would reach out and grab it very quickly. Those are all sort of little microaggressions that I was like, okay, it’s not my responsibility to make them feel comfortable with me. I’m faster using my left hand and they’re going to be okay.
LFL: I know that a phrase you’ve used a lot on your website and podcast is “rewriting the narrative”. Do you feel like your daily life is a part of how you rewrite the narrative?
Sarah: Absolutely, and even thinking of that too, if we are going back to serving drinks on the airplane, that’s a space to be like this is what a flight attendant can look like. Sometime hands have fingers and sometimes they don’t and sometimes hands are ends of arms. These are all options of what human variation looks like and this is how we re-write what that is. I feel a story that I could echo is disability is significantly lacking in a lot of our media outlets. A lot of people have not been exposed to different types. I think largely we have an idea of what a disability means, but that’s really only a very narrow image. Helping rewrite the narrative will really expand what does disability look like and what are all the different types of disabilities and needs that each community member has. So, I’m going to keep handing people drinks like this [balanced on left hand] and I’ve never spilt it on anyone. That is fine and it shouldn’t be alarming. It’s just one version of how a drink can be served. I really like that, just exposure. Even within myself, I work on really using my left hand more for activities. Even rewriting that narrative within myself, my left hand can do a lot more than I give it credit to, because I learned as a child that people didn’t want to interact with that part of my body, so I learned to do most things with my right hand. Then even in myself, just giving my left hand more tasks and allowing people to interact with my left hand, even simple tasks like going to the grocery store and pulling out my card and handing my card with my left hand to the cashier. That’s the type of smaller action that’s okay for me to handle with my left hand or reach for something with my left hand, whereas prior in my life I would have needed to do lots of different hand switching. I would move things out of my left hand into my right hand to be able to interact with everyone with only my right hand. These I think are simple ways that we do rewrite the narrative, and someone’s like: this is what a hand looks like, and that’s okay.
LFL: So basically, being an advocate doesn’t always have to look like someone talking from a podium, but it can be a part of people living their daily lives, if they are comfortable doing so, in a visible manner.
Sarah: Absolutely.
Read Part Two of this interview with Sarah Tuberty where we discuss her creative outlets of aerial arts and participation in the Super-Abled comic anthology.
Follow us on Instagram @ableartslearnforlife and Sarah @aerial.and.airplanes .
Want to learn about other types of therapy? Check out this Q&A with an Art Therapist.
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.
