The Black Child Downs Syndrome Project

For many parents, finding a community that truly understands their family’s experience can make an enormous difference. For parents of Black children with Down’s syndrome, that search can sometimes feel even harder.

That is the gap a group of mothers in London set out to address when they founded the Black Child Down Syndrome Project two years ago.

Their message is simple but powerful: Black children with Down’s syndrome deserve to be seen, represented and celebrated.

Filling a gap in representation

The project was created by four mothers who felt there was a lack of visibility for Black children with Down’s syndrome within wider disability communities.

For co-founder Danise Bartlett-Grant, the aim was not simply to create another support group. It was about building a community where families of African heritage could connect with people who understood aspects of their experiences that might otherwise go unspoken.

The initiative provides parents and carers with opportunities to share advice, discuss challenges and build friendships. It also creates activities for children, including poetry and book-reading events.

That sense of belonging can be particularly important for families who may have previously felt isolated.

Changing the picture

One of the project’s most striking approaches has been its use of photography.

Photographer, social activist and Oscar-nominated filmmaker Misan Harriman captured portraits of children involved with the project. The resulting photographs were exhibited as part of Reflecting Radiance and displayed publicly, including on London’s Piccadilly Lights.

The decision to put these children in such a prominent public space was about far more than creating beautiful photographs.

It was a statement of visibility.

For Bartlett-Grant, seeing children with Down’s syndrome from the Black community represented publicly was part of challenging the idea that disability should be hidden.

Harriman has described the children he photographed as among the most important people he has had the privilege of photographing. His work demonstrates how photography can do more than document people’s lives—it can challenge assumptions about who gets to be represented in the first place.

“A minority within a minority”

Black children with Down’s syndrome occupy a distinctive position when it comes to representation.

They are part of the Down’s syndrome community, while also belonging to a racial minority that has historically been underrepresented in mainstream imagery and storytelling.

That combination can make representation particularly meaningful.

Co-founder Oneness Sankara described searching for images that reflected her own family when her son was born and finding very little that looked like them.

That absence matters.

Children build their understanding of the world partly through the people they see in books, photographs, television, advertising and public spaces. Parents need representation too: seeing families who share their experiences can provide reassurance that they are not alone.

More than photographs

Although visibility is at the heart of the project, its work extends beyond campaigns and exhibitions.

The organisation also seeks to help healthcare professionals and educators better understand how race and disability can intersect. That is an important part of creating more inclusive services.

For families, practical support and community connection can be just as valuable as public awareness.

The project gives parents and carers opportunities to meet, talk and share experiences. These connections can help counter the loneliness that some parents experience after their child is diagnosed with Down’s syndrome.

As co-founder Tonye Faloughi-Ekezie has highlighted, parenthood can feel extremely lonely—but being surrounded by people who understand your experience can transform that feeling.

Recognition for community work

The project has now received wider recognition for its efforts.

It has been nominated for a BBC Make a Difference Award in the Best Community Project category, following a nomination from a parent. It has also been nominated for the 2026 National Diversity Awards.

The nominations are significant not simply because they bring attention to the organisation, but because they highlight an issue that can easily remain invisible.

Community projects often begin with something deeply personal: a group of people noticing that something is missing and deciding to change it.

That is exactly what appears to have happened here.

Why representation matters

Representation isn’t about ticking a box or simply putting different faces into photographs.

It is about allowing people to recognise themselves in the world around them.

For a parent looking for their child in a picture book, a poster, a billboard or an awareness campaign, seeing someone who looks like their family can send a powerful message: you belong here too.

The Black Child Down Syndrome Project is helping to make that message visible.

Its photographs, community events and educational work all contribute to a wider goal—creating a world where Black children with Down’s syndrome are not overlooked, but recognised for exactly who they are.

Sometimes social change begins with something as straightforward as being willing to look at who is missing from the picture.

And then making sure they are seen.