Rewriting the Narrative with Sarah Tuberty, Part One: Within Ourselves

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.

Headshot Sarah Tuberty in a pink blazer with. a black shirt, smiling, looking left into the distance.
Sarah Tuberty smiling, looking left into the distance.

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.

Sarah Tuberty poses, with her head in her hands, in front of a floral mural of large smiling succulents.
Sarah Tuberty poses in front of a floral mural

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.

Sarah Tuberty smiles at camera with both arms on her head while wearing a maroon long sleeve shirt that says "I Love Inclusion & Occupational Therapy."
Sarah Tuberty smiles at camera while wearing a shirt that says "I Love Inclusion & Occupational Therapy."

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.