Sharing the Caregiver Perspective

Watch the panel discussion.

Speakers: Noriko Ohsada, Liv Mendelsohn (Canadian Centre for Caregiving Excellence), Sung Won Kim (Korea)

The second full day of the conference began with an important perspective that cannot be ignored in the conversation around artists living with developmental disabilities – caregivers, as broadly defined as that might be. The role of family members, support workers – ultimately, allies – is one that needs careful consideration particularly when it comes to individuals with developmental disabilities. Speakers of this panel discussion shared their stories and inspired delegates, some of whom were caregivers themselves.

“The role of caregivers is often to be that bulldozer and to address … barriers,” said Liv, the Executive Director of the newly-formed “We are so dedicated that sometimes we may overstep those boundaries,” said Noriko, mother to NaAC artist Meg Ohsada. Liv replied, “Yes, it’s a bit of a dance … it’s a role that needs to address those barriers.”

This being said, the other role of caregivers is to embrace supporters, said Sung Won Kim, mother of Korean artist Pixel Kim.

“I would not have considered Pixel as an artist,” said Sung Won. “It was, in fact, Pixel’s teachers, friends, his day program agency, who started collecting his works and sharing with me that these need to be exhibited, and that his talent needs to be supported.”

Ultimately, caregivers need to understand that their role – differing as it may be from time to time – is to ensure that the artists they are supporting can focus on their incredible artistic practice.

Canadian Centre for Caregiving Excellence. “Attitudinal barriers, preconceptions and stereotypes are very much alive especially in the arts.”

“Not knowing how to include someone who has tremendous talent, or how to apply universal design to the world of art and art education is something that caregivers come up against,” she added.

Sometimes because of these barriers, it may be difficult for caregivers to understand the boundaries of what their role is as advocates and allies. This speaks to the need for more institutions and organizations to step up and be able to provide inclusive supports and programs for artists – lessening the pressure on caregivers.