Raising a loved one with Down syndrome in a Black family often comes with a layered experience – one that’s full of love, at times confusion, resilience, and joy, but also one marked by systemic gaps, cultural misunderstandings, and at times for many painful isolation. However, for many of us, the diagnosis doesn’t just land on the shoulders of the parents or siblings if they are old enough to understand – it echoes through the whole village. Yet the way that the village shows up can vary from person to person.
Although we may each experience our journeys differently – some of us grieving, some of us advocating, some of us learning as we go; too often, Black families find themselves navigating this journey in silence. Not because we want to, but because we haven’t always been seen. Resources aren’t always offered to us the same way. Information isn’t always shared with us and in addition to this cultural competence is often lacking, leaving families to figure things out on their own which can impact the family and those they care for in a negative way.
This is why having and feeling part of a community is so significant.
We created the Black Child Down Syndrome project because we understood the importance of both having a community and being visible as a community. Not only was it evident that we needed safe spaces to commune, but also a place where stories could be told, and travelling the diagnosis of Down syndrome could be done together.
Although this journey can at times feel isolating, we must remember, we don’t have to walk it alone – let’s journey together.
Let’s also not forget, when we come together, we always create something powerful. We pass wisdom down. We protect each other. We celebrate our children in their full brilliance. We remind each other that while the world may not always make space for us, we will always make space for each other.
Let’s continue to build that village one family at a time.
