Clovis Grant

Being a parent and caregiver for my son Isaiah has been a journey for me and my family. Isaiah is autistic and non-speaking. His disability is invisible. In Black culture, we do not talk about disability and mental health. There was a lot of ground to cover, and our journey continues today.

I never considered myself an advocate before becoming Isaiah’s father, but you are thrust into a space where you have to constantly advocate and push the envelope to ensure your child’s quality of life.

There were times when my wife and I felt judged by people in our community when Isaiah would have behaviours others did not understand. We would get stares in public and at church. People thought we were too “lax” as parents. When he was younger, my wife and I would take turns going to church to avoid the attention.

We want Isaiah to have a full life and have worked hard to create that for him. Isaiah is now in his twenties, which comes with new challenges and possibilities. Last year we started a farming program for him where he grows his own vegetables and sells them at the market.

Thinking of the future is difficult. Sometimes I am scared for him. He does things that can look suspicious and as a Black man, if he is in the wrong place at the wrong time, things can go very wrong. 

The current systems are not flexible enough to support Isaiah in the life that he and other kids like him deserve. Families have to pay for support out of pocket, which can be very costly. Better support and opportunities for people like Isaiah will have an important impact on caregivers. If we can give people with disabilities what they need to thrive, which would allow their caregivers to thrive too.

My wife, Sherron, and I started the Sawubona Africentric Circle of Support to build connection with other Black families with children with disabilities. Too often we were the only Black parents attending support groups and programs. We share our work where we can inspire others and we always meet other families going through what we did when we do.

The Canadian Centre for Caregiving Excellence’s advocacy work gives us hope that a brighter future is possible and changes for caregivers and people living with disabilities are on the horizon.