Gabriel P. Donovan, a senior at Villanova University, has been a powerful voice in the rare disease and disability inclusion community. Diagnosed with neurofibromatosis (NF1) as an infant, Gabe has spent his life navigating complex medical care while also creating spaces of belonging for others. A Presidential Scholar pursuing dual degrees in Public Service and Administration and Humanities with minors in Disability and Deaf Culture and Philosophy, Gabe exemplifies leadership through his work with Villanova’s LEVEL (Disability Inclusion Club), the Presidential Scholars Program, and his longtime involvement with Double H Ranch, a camp for children with life-threatening illnesses. Gabe has generously given his time to share his experience with students in the Minor, and this week we are honored to share his reflection through our Shared Ground series. Here, he highlights the importance of lived experience, faith, and community in shaping how future healthcare providers approach care.
Shared Ground: Seeing the Human First
"Being a child with a rare disease is thought to be a pretty tough way to go through life. In my mind there is one thing much harder. Being a child of two “Domers,” which I can say because I also have a rare disease. Naturally, when I was able to participate in the University of Notre Dame Rare Disease and Patient Advocacy Program I jumped at the chance.
Although I am a senior at Villanova University, I have been welcomed as part of the Rare Disease and Patient Advocacy Program at the University of Notre Dame as if I was a Notre Dame student. During my college search I had the honor of meeting Barb Calhoun and my connection with her has been life changing. Over the past four years I have relished the opportunity to participate in a variety of forums and panels that have allowed me to share my lived experience as an individual who has been a life-long consumer of complex medical care. Individuals with disabilities, rare diseases and chronic conditions spend five times more on medical care than their peers without disabilities, rare diseases or chronic conditions. We have experiences with intricate health care systems and solutions that when explored and documented can lead to better care and patient outcomes. This a very unique and needed perspective that the Notre Dame Rare Disease and Patient Advocacy Program brings to students that are preparing to be future medical professionals. I am so very grateful for the opportunity to share my experience with students so that their care of future populations is enhanced. Perhaps one day, a Notre Dame student that I have spent time with will be a medical professional that changes the outcomes of Neurofibromatosis patients like me.
Earlier this year I was paired with a group of students, Grace, Emma and Kathleen in the Patient Advocacy Minor that were completing their capstone project. I answered a variety of questions and shared my hurdles with access to care, patient-physician communication, health care disparities and patient empowerment. The first meeting was a get to know each other but as the conversations progressed, it was clear that the students’ ideas and opinions about disability, rare disease, and chronic conditions broadened. It was empowering to be part of that educational process. Throughout our conversations the students really dove into the topic of lived experience, wanting to understand what made me different from others.
Grace, Emma and Kathleen became less intrigued in the patient experience within the healthcare setting and more interested in those other factors that created wellness and belonging for me that were not part of the healthcare setting. My Catholic faith and my specialty summer camp Double H Ranch were places where I found belonging. Double H Ranch is a medically secure camp for children with life threatening illnesses that I attended for a decade and have returned to work at as a counselor for the last four summers.
A sense of belonging has a direct effect on a patient outcomes. My ability to engage with a community of people that understood me and looked at my varying abilities with promise allowed me to focus less on my health and the potential pit falls of my disease and more on what I could joyfully accomplish. My parish and my pastor welcomed me as a member of our Catholic faith community openly and the lay leaders of my parish served regardless of ability. Faith in a greater power and plan was an important tool to help me through particularly difficult times. The most important thing was that the care I received throughout my life was not just from a hospital, it was from all over.
In discussing my experience at Double H Ranch and my faith, I gave the students a first-hand perspective that there is far more to the care and inclusion of an individual with a disability, rare disease or chronic condition than day to day medical care. As the healthcare system changes over the next decade and resources shrink, this next generation of providers will challenged to find wholistic approaches to care. I commend the Rare Disease and Patient Advocacy Program at Notre Dame for exploring this important topic.
My biggest take-away from connecting students and future providers with people like me is hope. I hope one day Grace, Emma and Kathleen will see a kid like me in a medical setting and see the human being first. In my case, I was a kid who had more MRIs and surgical procedures than Christmas, Easter, and Halloweens combined. I was a kid who may have forgotten more about my disease then medical providers would ever know about it. I am confident in my hope that these connections help students see the person and their lived experience ultimately promoting a more comprehensive care continuum.
The only way for people to learn is to ask questions. The best part of this program was that Grace, Emma and Kathleen were able to ask me anything. There was no such thing as a dumb question. The only dumb thing is assuming you know without asking." - Gabe Donovan
Shared Ground is a guest-authored series featuring stories from the patients, caregivers, advocates, and community partners who collaborate with students in the Minor in Science and Patient Advocacy. These firsthand reflections explore what it means to learn together, and why lived experience belongs at the center of advocacy education.