The first person that I ever came across with Down Syndrome was my aunt. At that time I was a little girl and was always wondering what made her so different from the rest of us. And now, years later, I had the opportunity to get a deeper insight into the uniqueness of people like her, and realize how much of what we think about them is misleading. For a week, I documented a group of students with Down Syndrome in Oaxaca, Mexico. What I found out changed me profoundly. With this project I intend to give the people with Down Syndrome a voice to express who they truly are and invite others to see them in a new way as well.Reflection on the project:
DOWN SYNDROME - BEYOND PREJUDICE
“Five hours until I catch a plane home, after an exhilarating week of photography. My heart feels on the edge of bursting out of gratitude. I feel so blessed... Bruno took a piece of my heart; his loving presence, his playfulness, his nonchalant being deeply affected me. I catch myself drifting to thinking of how will his life unfold. I feel the grasping that took hold of my heart of wanting this to never go away, this feeling of overwhelming, unconditional love...” – My Journal.
The story took place at the Integration Center for people with Down Syndrome -“Capindo”, in Oaxaca, Mexico, in February, 2017. Dr. Rosa Gonzalez Ruiz incorporated the center two decades ago, creating a space where people with needs similar to her daughter’s, who was born with a severe Down Syndrome condition, can learn valuable life skills, receive necessary care, and feel part of a supportive community.
Down Syndrome occurs when a fetus gets an extra copy of chromosome 21. The additional genetic material is responsible for cognitive disability, intellectual and developmental delay and causes the characteristics associated with Down Syndrome: small stature, distinctive facial features, and low muscle tone.
Besides covering daily life routines at the school, I focused on Bruno Velasco Pinacho, an eight-year-old boy, with whom I bonded instantaneously. He’d meet me each morning eager to show me all about his world, we played games, we danced Samba. He was so happy to have me came along to his speech therapy session and meet his family. At home he showed me the sitcoms he religiously watches each evening, and acquainted me with his dog Kai. Bruno had a difficulty expressing with words, and I didn’t speak Spanish, but somehow we knew we share a common, deeper tie.
At school, the students met me with overwhelming warmth. They were so joyous in their interactions. It seemed as if they had no concept that there is something ‘wrong’ with them. Their way of being was showing me, as if in a mirror, that what I knew of them had little to do with who they are. I was amazed to see them as beautiful and affectionate human beings, full of emotion and expression just like us, embodying a quality of tenderness reflective of their nature. My prejudices were rooted in that they looked different from me, because it caused me fear; it came from ignorance and social stigma that runs deep in all of us. It is the same alienation observed in our society in relationship to race, gender and religion, political view, social and economic status.
My experience taught me that how people with Down Syndrome are perceived depends on the level of awareness about this issue; and funding allocated to address their specials needs directly influences their quality of life and their capacity to integrate into the society, especially in countries with poor infrastructure and socio-economic stress. Down Syndrome is the most prevalent and yet the least funded major genetic condition in the United States and in the world. Hence I am driven to continue documenting the story of people with Down Syndrome in Oaxaca, Moldova and United States.
My project aims to emphasize their qualities beyond the disability, to create an outlet for them to express their truth and invite others to a new understanding. I intend to tell their story through a series of portraits, along with scenes of everyday life. The purpose of the portraits is to get past the appearance that identifies all victims of the Syndrome and help viewers see the individual in a more intimate way.
Many photographers have addressed this issue. Yet this experience transformed me from within. I felt no real difference between us. I want that others feel that too. I want to create a conversation, to raise public awareness that in turn could inform policies and encourage funding for further research. To quote Mother Teresa: “The problem with the world is that we draw the circle of our family too small.” This project attempts to draw the circle wider.