This summer, Allison and I were on our dear friend RuthAnn’s podcast about caregiving, For Those Who Care. It ended up being a long two-day conversation that RuthAnn broke down into five separate episodes of the podcast. I’ve collected all five episodes here with brief descriptions of what we talked about in each.
Episode 1: Where Their Caregiving Story Begins
In this first episode, we introduce ourselves and our advocacy and caregiving journeys as parents of a multiply disabled child.
Link to episode 1.
Episode 2: Finding and Rebuilding Community
Here we discuss some of the difficulties we’ve faced in terms of community, finding and providing support, and communicating with people about disabilities.
Link to episode 2.
Episode 3: Bridging the Gap-Understanding Disability in Everyday Life
Much of this episode focuses on difficulties we’ve had with schools, including when a district that our son had been in for 7 years told us he was no longer welcome because of his disabilities. We also talk about how caregiving impacts various aspects of our social lives.
Link to episode 3.
Episode 4: Guilt and Navigating the Emotional Weight of Caregiving
This episode focuses on the emotional toll that caregiving and advocacy have had on our family. We also discuss how those caregiving demands our son’s disabilities involve impact our two other children and family dynamics.
Link to episode 4.
Episode 5: Advocacy, Guardianship, and Teamwork in Caregiving
In this final episode, we discuss how I got started doing academic scholarship on disability out of our advocacy work, some of the advocacy difficulties we’ve faced, and what it’s like for us as a couple to be engaged in caregiving work in our family.
Link to episode 5.
