Black family. Woman and man and two boys.

Take pride in your disabled family member’s advocacy

1 June 2023 | Advocacy, Learning

What do you do when your disabled family member starts telling the world he had a horrible childhood?

Many disabled adults want to prevent disabled children from going through the same difficulties as they experienced when they were children. To get the message out, they may become a public speaker, appear on the radio or TV, start a Facebook page or a YouTube channel, or help launch a support group or an organisation in their local community.

For the family of the disabled person, this sometimes feels awkward. “If Joseph is telling people he had a difficult childhood, who will society think caused all the problems? They will think badly of us!”

To the family, it may feel like Joseph is trying to bring shame on them. But the family may have been doing their best as Joseph was growing up, and the systems were simply not there to support them.

Our advice to families in this situation is this:

Don’t make it about you. The world out there isn’t looking at you. They are looking at their own situation, and how they can make things better for their children. They are learning from your disabled family member, and they admire them.

Take pride in what your activist relative is doing. Tell people about their activism. Tell the world that you as a parent or family did your best, but you didn’t have all the answers. Tell them how proud you are that your relative is now guiding other families.

Don’t you now try to teach others based on your own ideas. Instead, point people to what your relative and other actual disabled people are saying. That way, they will learn that disabled people themselves can teach them the most.

When the world learns to listen to as many disabled people as possible, things will become easier for everyone: for disabled people and for the families who do their best. And you can be proud that you were a supporter of that process of getting others to listen and learn.

Listen to a radio interview with Irene Mathenjwa, mother of nonspeaking autistic activist Zekwande Mathenjwa.