Support, isolation, funding, resources, friends...these are the things that many families who care for someone with special needs think and worry about. For many of these families, their circle of support is quite small. This is often the case for racialized communities who have a child with special needs. The Black Parents of Children and Adults with a Disability Support Group (BPSG) was created by my husband and me to provide a safe space for families of African descent to come together to meet and connect, share resources, expertise, and needs, and to inspire and support one another through our unique, challenging, and isolating journey of raising Black children or supporting a sibling of any age with a disability.
My youngest son is now 24 years old. He was diagnosed with Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS) and, later, autism when he was four years old – a little late by today’s standards, but autism discussion and accurate diagnosis was still in its infancy stages back then. Many attributed our son’s delays to “He’s a boy. Boys walk late.” and “Perhaps you are overreacting, give him time.” Even then I had to put on my “advocate hat” just to get an appointment to be seen by a developmental pediatrician because, though I lack a medical degree, my mommy senses were tingling and told me that something is not right here.
December 2000, we walked out of the doctor’s office with a diagnosis and contact information for a couple of agencies. After that we were on our own. What a shock! Our entire world had been turned upside down. I eventually found my way to a parent support group hosted by Community Living Toronto. There I found comfort and relationships with other moms who, although their children may have had different diagnoses and challenges to contend with, were on a similar path. They got me. Well, at least most of me. While I enjoyed the support groups and often walked away learning something new and practical, there was always something missing. I tended to be the only face of colour in the room. Often, when there was another racialized person in the space, we would make eye contact and give each other that familiar comforting smile and nod.
During these events, parents would discuss navigating the medical system, the school system, gaining resources; but it was not from a lens that I could relate to. You see, as a Black parent, my experiences are very different from what I was hearing. The other parents and the facilitators of these groups did not look like me. The lens from which these discussions took place was often so different from my own lived experience. If I did feel comfortable enough to raise my concerns about possible racism or exclusion or excessive discipline, I was often brushed off or the topic would quickly change. I could tell that the facilitator and attendees did not feel comfortable to “go there” and I am not the type to hijack the conversation. After a while, I stopped attending these meetings as they just weren’t meeting my needs anymore. Truthfully, I sometimes felt lower leaving than when I first arrived.
A few years later, I decided to begin attending again. Our son was now older and his and our needs and goals were now changing. Again, I noticed that I was the only non-white caregivers in the space, or one of only a handful. And I thought to myself, where are the Black parents? I see their children at Variety Village, I see their children in my son’s class and school or at respite programs. Why are they not at these meetings?
Over time I came across emails advertising parent groups with a different cultural or linguistic focus… but never anything for Black caregivers specifically. I decided that enough was enough. I couldn’t be the only one who felt this need for a group where people looked like me. And so, the BPSG came to be. After our family and group were the subjects of an article that appeared on Holland Bloorview Kids Rehabilitation Hospital’s BLOOM blog, the emails began pouring in. Families from across Canada, the US and internationally began reaching out, wanting to know more and to be a part of what we were trying to create.
We had initially envisioned between five and ten families hanging out with us on Zoom, sharing ideas and resources. Instead, we quickly grew to 40 families attending our first online meeting in November 2020. Currently we have a membership of over 130 families, with almost 100 sharing and connecting via Facebook. After only a few months of meeting, we were asked by families to move our monthly meetings to twice per month as families sought more time for fellowship and just to be together. This served to affirm that this group was needed. Families have shared what a “breath of fresh air” it is to have a group like this, to connect with on a regular basis.
The gratitude of the participants so far is overwhelming and affirms that such a group was long overdue. As for my husband and I, we also feel filled up to be able to connect with other Black families and to be able to share similar stories and feelings as well as hopes and dreams for the future. Families are reaching out for support and connection. Perhaps we will find our son’s future housemate through this group!
We don’t know what lies ahead but we do know that we have created something that is meeting a need for so many. BPSG will continue to grow and evolve. The future possibilities are endless and so is our belief in what can be. Ashe.
BPSG is a volunteer-run group that meets the second and fourth Tuesday of each month via Zoom. To register or for more details, email firstname.lastname@example.org. You can also find them on Facebook.
Photo courtesy of Sherron Grant. Sherron is an elementary school principal with the Toronto District School Board and her husband Clovis is the Chief Executive Officer for 360kids. They are proud parents and grandparents and hope that their story can inspire and provide strength to others.