We were lucky to catch up with Sarah Pennington recently and have shared our conversation below.
Sarah, thanks for taking the time to share your stories with us today We’d love to hear about when you first realized that you wanted to pursue a creative path professionally.
When I introduce myself to people for the first time and mention my main passions are motivational speaking, filmmaking and disability advocacy, the connection between motivational speaking and disability advocacy seems clear, but it’s often assumed filmmaking is an outlier, which couldn’t be further from the truth. In fact, it was my advocacy work that helped me discover filmmaking was my destined career path.
When I was in 5th grade, I was diagnosed with trichotillomania, a hair pulling disorder. Trich, for short, is a type of BFRB, or body-focused repetitive behavior. At first, I only pulled from my eyebrows and eyelashes. Because the hair loss at this point was localized to these two areas, I was able to keep the disorder a secret. When the occasional observant inquisitor questioned me about my lack of eyebrows or eyelashes, I would tell them that, as a blonde, they were just “too light to see.”
However, after a few years, I began pulling out my head hair. The damage quickly began to be noticeable, causing a bald patch on the crown of my head to gradually grow from the size of a dime to ultimately cover the entire top of my head. At first, I changed the part of my hair to hide the spot, then switched to thick headbands, bandanas, and eventually wigs to cover the hair loss. I was so ashamed of both my condition and my appearance that no one outside my family knew, including my best friends. I truly believed that I needed hair to be beautiful and worthy of love.
For years, I wore wigs in an attempt to hide my secret from the world. However, I was not only dealing with trichotillomania, but increasingly worsening anxiety and depression. Finally, at 16, everything came to a pinnacle, and I made the tough decision to enter a residential treatment program after years of outpatient therapy. This decision changed my life in the best way possible and gave me the confidence to eventually embrace my authentic self by going without a wig and publicly sharing my hair loss journey.
Rather than just using words, I felt telling my story through visuals to showcase my hair loss journey would be the most effective way to illustrate what I had been through the past several years. I ended up creating a YouTube video that showcased my journey. I had an incredibly positive reaction to the video, along with an amazing outpouring of support from my friends, family, and community. Motivated by this reaction, I began creating additional update videos as I reached more milestones (and setbacks) on my journey.
Eventually, I decided I wanted to expand my outreach to highlight not just my own journey, but the journeys of others. I made a documentary highlighting several teenage girls and their experiences with different psychiatric conditions. This film went on to be screened at my local film festival (a feat I was extremely proud of, especially considering I had no budget for the project and very little filmmaking experience)!
I found so much joy in both the filmmaking process and the ability to shine a light on historically underrepresented communities that I realized after I began to create these videos that I had found the thing I wanted to do for the rest of my life!
Great, appreciate you sharing that with us. Before we ask you to share more of your insights, can you take a moment to introduce yourself and how you got to where you are today to our readers.
If I had to describe myself in just two words, it would be storyteller and changemaker. I have always been a creative person, enjoying singing, acting, writing, and arts & crafts. However, it wasn’t until after my hospitalization that I was inspired to use my creative skillset to make a difference in the world. As a 16-year-old, it was the perfect time to discover my calling, and helped me decide on my plans for college.
I began my college career with a full scholarship at a small liberal arts college. Knowing I wanted to expand my filmmaking knowledge, I transferred to the Savannah College of Art & Design and graduated with a BFA in Film & TV in 2022. In the fall of that year, I began working full time at Space Dream Productions, an independent film production company, living my dream as a filmmaker. The company is the perfect fit for me, as they value creating inclusive and accommodating spaces to tell authentic stories.
One of our most recent projects is a film called The Heist, which was created during the Easterseals Disability Film Challenge 2024. It’s one of my favorite projects I’ve had the pleasure of working on so far in my career. I got to be involved with the project in a variety of different roles, including acting alongside my real life service dog, Daisy, and editing (one of my favorite phases of the filmmaking process). The story highlighted several different layers of disability, including various types of communication such as ASL (American Sign Language) and SimCom (speaking and signing) and featuring characters whose storylines transcend their disability, all while being created by people with disabilities. For me as a disabled filmmaker, not only is the onscreen representation a huge win, it is also a testament to the incredible stories and quality of work that disabled creators can do. This is so important to showcase when people both in and outside of the entertainment industry are still incredibly wary of hiring people with disabilities.
As I’ve continued growing as a filmmaker, my advocacy work has also expanded, and led me to unexpectedly discover my talent as a motivational speaker. As a kid, I was deemed the quiet girl. I wouldn’t say I struggled to speak in front of groups, but also never went out of my way to be the center of attention. On stage, however, it was a different story. I loved to sing and act, and was involved in choir, plays, and musicals. As I began to publicly share my hair loss journey, I found the power in public speaking, and realized I had a hidden talent.
I quickly escalated from speaking to smaller groups to leading workshops at conferences across the US. In December 2017, I was invited to share my story on the Megyn Kelly TODAY Show, which kickstarted several incredible opportunities, including speaking at WE Believe in Saint John, New Brunswick, Canada, an amazing event with almost 8,000 in-person attendees dedicated to inspiring students to be the change. (In fact, I have been invited back to speak at their 2025 event!)
Each time I present, my message is slightly different, focused on the needs of the specific group. However, at the end of the day, I hope to highlight the power of authenticity. Being unapologetically myself has allowed me to get where I am today. I spent so many years trying to be like everyone else, whether it was decisions about my career, my identity, my appearance, or even the way I acted, that the moment I stopped trying to fit into the mold of “societal norms” and began embracing the young woman I am on the inside, was when I truly began to find success (in all areas of my life).
Have you ever had to pivot?
For several years, my main focus with my advocacy work was mental health and psychiatric conditions, as a result of my own experiences. I was determined to destigmatize mental health and change our societal perception for these conditions so that mental health care was seen as equal to physical health care.
This emphasis was not only outward-facing, but also reflected the personal challenges I was dealing with. Just because I had been discharged did not mean my mental health conditions were cured. I continued to work towards beating my depression and minimizing the effects of my anxiety and trichotillomania in my day-to-day functioning. By the time I was ready to leave for college, I felt I had everything under control for the first time in MANY years. And then I began my first semester at college.
I made the mistake of taking an 8 AM class that required excessive standing. What I didn’t know at the time, but quickly realized, was that I wasn’t only dealing with mental health struggles. By the beginning of my second semester of college, I was diagnosed with POTS (postural orthostatic tachycardia syndrome), a form of dysautonomia. POTS is a chronic condition characterized by an excessively fast heart rate and symptoms of lightheadedness upon standing (according to Dysautonomia International).
This diagnosis temporarily shattered my sense of self. Up until that point, I had believed that I only had to fight my mind. Now, I had to entirely change how I operated, as I couldn’t fight my body. Rather, I had to adjust how I approached my daily life, being mindful not to push myself beyond my limits. I had to learn that some days I will have more energy, and other days I may be unable to function.
It ended up redefining my identity. Up until this point, I had never fully embraced the idea of being disabled. However, the more I learned about POTS, both from research and from support groups, I soon came to understand that there is nothing wrong with being disabled, but rather it involves a different way of approaching and interacting with the world.
I truly believe my past experience coming to terms with my hair loss gave me the skills and the courage to embrace my diagnosis with POTS, advocate for my needs in public, and have the confidence to know I was worthy of taking up space as exactly who I was (a bald, disabled creative).
This was when the revelation happened! I began to see the parallels and overlaps between the advocacy work I had been doing with psychiatric conditions and invisible/hidden disabilities. Within a year of my diagnosis, I shifted the trajectory of my advocacy work to focus more on awareness and accessibility for people with disabilities (including people with invisible/hidden disabilities). It was a terrifying change, but it set me up to be the woman I am today.
Is there mission driving your creative journey?
I remember a moment very early on in my filmmaking journey when I was talking with someone on the phone who was supposed to be a mentor for me as I entered into the entertainment world. I was asking a variety of different questions, wanting to know everything I possibly could about filmmaking, and especially what it was like to be on larger, more professional sets. (At that point in time, I had only been on sets with smaller student crews.) The person was eager to tell me all about it, right up until I mentioned having a service dog. Then they got eerily quiet, skirted the question, and began pushing me to consider pathways that didn’t involve me being physically on set.
The message that I wasn’t welcome was abundantly clear, and it was truly disheartening to be at the start of my journey and already face barriers. However, it wasn’t the first (or last) time I would be discouraged from a space purely because of my disability.
As I continue working to shine a light on disabled communities by telling stories through filmmaking and encouraging others to embrace their authentic selves through motivational speaking, I recognize that, for people with disabilities especially, part of being able to be your authentic self is contingent on a space being welcoming and accommodating. This is why I am on a mission to ensure every space is created to be a welcoming and accommodating environment in another important area of my life – pageantry.
Pageantry has been as much a part of my life as filmmaking or motivational speaking. I began competing in pageants 8 years ago after a friend saw my advocacy work and encouraged me to compete, as she felt this was the perfect platform! (Platforms in the pageant world are the primary causes or organizations titleholders dedicate their service to.) I took a chance and competed, and was shocked when I was crowned the winner! I didn’t realize it at the time, but at that moment, I was “bitten by the pageant bug.” Since then, I have held local, state, and national titles in several different systems, using the microphone the crown provides to bring awareness to disability accessibility through my program, Pageant Inclusion.
Pageant Inclusion is focused on providing training and resources on accessibility practices within the pageant industry for directors, staff, volunteers, and titleholders. I am currently developing a website to provide a centralized location for these resources. In the meantime, my Instagram account @PageantInclusion provides social media accessibility tips and tricks that not only can help my fellow titleholders and pageant directors to expand their social media reach by making their content more accessible, it also is a great resource for anyone with a social media account!
One day, I hope to live in a world where disability accessibility is commonplace. Until then, I will continue working alongside my fellow disability advocates to make small changes: one pageant, one film set, and one social media account at a time.
Contact Info:
- Instagram: https://www.instagram.com/sarah_m_penn/ ; https://www.instagram.com/pageantinclusion/
