“Don’t ask what the world needs, ask what makes you come alive, and go do it. Because what the world needs is people who have come alive.”
– Howard Thurman
Throughout the fellowship year Global Health Corps spoke to us about the importance of public narrative in advocacy and our work as public servants. They utilized Marshall Ganz’s framework to support all of us in finding and articulating our various voices as social change agents. Our stories are varied, often beautiful and simultaneously complicated, and at times even painful. This year together allowed the fellows to create a collective story, one that no matter where we all continue on to will support us as a community, as a network, and as a family.
Perhaps that is the greatest impact and lasting gift that Global Health Corps gives their fellows- each other. This work, all public work really, requires immense support in order to be effective. More directly, the people who are doing said public work need immense support to be effective in a field where burnout seems inevitable. The longer I work in the public sector, the more it is re-iterated that community is paramount: it is essential in turning vision into action, and in fulfilling our individual and collective potentials.
With that in mind, I feel that it is time for me to share my public narrative, a narrative that is centered on community. It is one that reflects my path traveled thus far, as well as where I am headed as a new Global Health Corps Alumni. So with no further ado… here is the public narrative of Marian Taylor Brown, my narrative, to date:
Coming home from kindergarden at the age of five I met the most influential person of my life, Sara Marie Ferrarone. Sara looked at me with her grin-toothed smile, long blonde pigtail braids, and unbridled compassion. For the duration of the bus ride home we talked at length, generally about the normal five year old topics- how many dogs we had, what their names were, what our favorite colors were, our family tree, etc. I vividly remember running home from the bus stop that day, repeating in my head over and over again her complicated phone number, 586-5867, 586-5867. Even at such a tender age I realized I had met someone of great importance, one of my life soul mates, someone who would change both my life and the world around her.
From that day on, Sara and I were inseparable. Towards the end of kindergarden something started to shift for Sara. Her balance started to become unstable, and she was showing difficulty with gross motor skills, often tripping and having difficulty holding pens and pencils, her grip failing her. Seeing these small shifts, under the support of her teachers, Sara’s parents decided to take her for neurological testing. The end result was an undeniably devastating diagnosis. Sara had a progressive, genetic, neuro-muscular disease called Friedrich’s Ataxia. FA effects 10,000 people globally, making it incredibly rare, and classified as an “orphan disease”. Shortly after Sara’s diagnosis her siblings, John and Laura also underwent testing where Laura was diagnosed with FA, and John as a carrier.
Throughout Sara’s life she has always been the paragon of living and leading with courage, laughter and love. Despite the adversities she met on a daily basis, she was always caring and supportive of those around her, striving to create a genuinely more inclusive world- not just for those living with FA but for the entire disability rights movement. She often addressed this inclusion by using art, purposing it as a community bridge for communication. The cure to FA did not come soon enough for Sara, and she passed away from complications associated with the disease in November 2012 at the age of 26. Sara taught me many lessons in life, lessons that I will be unpacking for the duration of my existence. Amongst those, Sara truly illustrated the importance of having supportive communities, as well as the need to be proactive in both giving and gaining support in both health care and education for all to succeed.
Sara and I were lucky. We grew up in a privileged suburb of upstate New York that has amazing medical facilities and public schools. We had community that supported both of us in maximizing our potentials, and ultimately shaped our lives. The reality is that few are as lucky. This realization has led me to commit my life to building and supporting inclusive learning communities that empower a diversity of learners to realize and execute their full potential. My life mission is based on beliefs that Sara helped me find and realize: that healthcare and education are; and should be upheld, as human rights. From my personal lived experiences, I also believe that art serves as a conduit for cross-cultural understanding, deep and meaningful learning, creative expression, and community building. I therefore advocate that art, and access to art, are essential to defining equity and eradicating inequities in healthcare and educational systems worldwide. I will never pretend art can solve all ills in this world, but I do believe in, and have experienced, arts power to effect real change.
I know this path is one that cannot be traveled alone. Not for Friedrich’s Ataxia, not in addressing inequalities in our healthcare system, and certainly not in our educational systems. We must recruit, and build a community of, the most brilliant and innovative thinkers that work across a myriad of sectors. This year as a Global Health Corps fellow I had the opportunity to be a part of a larger community of emerging leaders working in healthcare across Uganda, Rwanda, Zambia, Malawi, Burundi and the United States. I was placed at the Art & Global Health Center Africa in Malawi where we addressed pressing health and community issues through arts-based programming. My experience as a GHC fellow re-iterated for me the importance of community in healthcare, the need for innovation in addressing healthcare, and that it our global responsibility to address human rights issues as a unified movement.
Through this experience with GHC, and my previous work in arts, healing and community building, I have realized it is our shared responsibility to active the arts community in addressing social justice issues. I have seen how art can help a diversity of learners succeed in public education as a formal and informal educator. I have taken part in designing and monitoring theater-based interventions; improvisation and theater for development that addressed quality of life for people living with dementia, as well as communities grappling with HIV and AIDS on a community contextualized level. As a visual artist, I have run workshops and experienced for self the power of using paper making to address post traumatic stress disorder and a myriad of other mental, emotional, and physical disabilities that communities face. I have seen over and over again the use of art in bringing community together, in promoting voice, and in making meaning after loss, trauma, and heart break. I have seen it turn despair into hope, and bring disparate persons, families and communities together with a shared and universal language.
With Sara, art was our universal bridge. As Sara progressively lost use of her limbs, and eventually the ability to speak, art became a conduit through which we communicated. In grade school Sara would write stories and I would illustrate them. This partnership continued, she always came with the most brilliant ideas and together we made them a reality. Together, with art, we painted our reality. From these individual and lived experiences, I have come to ardently believe that one of the greatest untapped resources in creative thinking and social innovation are community artist leaders. To date, there has been a dearth of support for artists in defining and bringing to fruition their voice and work as social change agents.
Arts Connect International (ACI), a newly founded Boston-based non-profit organization gives these artist leaders the space to do exactly that, and to proactively address the aspects of inclusion that they are most passionate about. This in turn gives them ownership and agency in their work. These change agents, these artist leaders, and ACI’s belief in their ability to progress the global inclusion movement, lay the foundation of all that ACI stands for. Together, as a community- we will cultivate and connect leaders in the arts field committed to cultural inclusion and social equity on a global scale, creating a community of life-long change agents. This movement starts today, it starts with the launch of our Artist-in-Residence and Rising Artist programs.
Completing my fellowship with Global Health Corps and the Art & Global Health Center Africa is bitter-sweet. At transitions it is always difficult to let go, however, I am confident that the new fellows at AGHCA and the growing GHC community, will continue to build the movement towards global health equity. Similarly, it is time for me to live my truth, to live my story, and to continue building community with both Global Health Corps and Arts Connect International. As always, I am deeply humbled by the GHC community and am endlessly thankful for being a member of said community. Together we can move the world towards equity, and together we will.