In 2019, the birth of my son, Noah, marked the beginning of a documentary photography project that introduced an entirely new urgency to my career—one I continue to explore today.
I had already used photography to center Black faces and bodies in society, making them protagonists of my art and a medium for social critique. But Noah’s arrival, with Down Syndrome, revealed photography’s true purpose to me: a tool for social transformation. Noah was not just another Black child subjected to structural racism during prenatal care and birth. He was also an atypical child, experiencing what I term *"inclusive racism"* from his earliest hours of life.
I coined the term *"Inclusive Racism"* during this profound, ongoing journey that began with his birth—and my own rebirth as a father, activist, and artist now fully aware of my purpose. By sharing Noah’s development on social media, I aimed to educate other atypical families about the critical importance of early intervention. This process exposed hidden truths about the exclusion of people with intellectual disabilities and the lack of open dialogue around their inclusion. It drove me to research everything about Trisomy 21 (Down Syndrome).
I found countless articles and campaigns, yet my search across media platforms laid bare the structural and systemic racism faced by Black people with disabilities. Of the first 50 YouTube videos on Down Syndrome, only one featured a Black individual. On Google Images, just 2 Afro-descendant faces appeared among the first 200 results. Yet, as geneticist and pediatrician Zan Mustacchi explains, Down Syndrome occurs equally across all races and ethnicities worldwide—it stems from a chromosomal anomaly (an extra copy of chromosome 21), unrelated to skin color.
Despite this, comments on Noah’s photos and a 2020 *"Quebrando Tabu"* article—the only Brazilian journalism piece addressing this invisibility—revealed claims like *“I’ve never seen a Black person with Down Syndrome”* or *“They don’t exist; it’s a white condition.”* Titled *“My Son Doesn’t Have the Face People Want to See,”* the article shared a Black mother’s struggle to access therapies and treatments, alongside World Down Syndrome Day campaigns that exclusively featured white children.
The more I read and felt this erasure, the more I photographed Noah—his features, milestones, and resilience. In early 2020, the Instituto Jô Clemente invited me to become an ambassador due to my advocacy, sparking the idea for a photo exhibition. The series *“InvisibiliDOWN: Essays on Racism and Down Syndrome”* was born to sound the alarm on the vulnerability of Black people with Down Syndrome in Brazil. The exhibition sought to humanize the issue, ignite debate on racial inequality in disability inclusion, and push policymakers, healthcare professionals, and institutions to develop more sensitive, inclusive strategies.
Initially, the project planned photoshoots with over 150 families across Brazil in 2021–2022. Due to funding shortages, it was split into phases, with *“InvisibiliDOWN Origins”* focusing on Noah’s story.
I have yet to secure the resources needed to complete the project as envisioned, as I still battle the very invisibility it aims to dismantle. To succeed, I must reach more people—especially white audiences and decision-makers in public policy. I believe my photography can awaken society to this urgent truth.
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