https://www.ellenstumbo.com/disability-culture-identity-part-2-episode-41/
Episode outline:
Physical therapy: the difference between how disabled adults see therapy vs how parents of disabled kids see therapy.
How to make choices when the medical community pushes for certain interventions.
Finding the balance on how much to “push” our kids and letting them be gloriously themselves.
What it is like for disabled adults to listen to parents of disabled children talk about caregiving.
Things that contribute to parents of disabled kids and disabled adults to be at odds.
“It’s hard for me to feel a lot of sympathy or empathy when people talk about how hard it is to be a caregiver. Because as a caree I don’t get a lot of sympathy. And there’s no caree support group, where we can go and complain about our caregivers.”
Marin Hann
If you parent kids with disabilities and you are nondisabled, chances are you don’t know much about disability culture. Personally, learning about my children’s culture has been a journey and a process, something I don’t always get right and I am still learning. In this episode of the Unexceptional Moms Podcast, Erin and I talk to Marin Hann — who is disabled — about disability culture and identity. We discuss how parents can build a bridge for their disabled children to learn about their culture, a culture as parents we do not belong to.
Episode notes:
Growing up as a disabled child being raised by non-disabled parents meant Marin’s parents were not aware there was such a thing as “disability culture” and neither was Marin until her teen years.
Marin HannBut yeah, my parents didn’t know that there was a disabled culture, or what that meant, either. And it makes sense, because I don’t know how they would have access to that prior. And they didn’t really know anything much about raising a disabled child till I showed up.
Marin explains internalized ableism as well as lateral ableism (the “hierarchy” of disability, and how problematic that is). And Erin and I express that even as parents of disabled kids, we are often ableist.
Although we do not come with an answer, we tackle the topic of separating our children from their disability. We also discuss “the great divide,” or the divide that exists between parents of disabled children and disabled adults.
Related: Bringing Together Parents of Kids With Disabilities and Disabled Adults
We address the history of disability, and how little our culture teaches about it. We discuss how watching the Netflix documentary, Crip Camp, is a good place to start.
Marin: Your child has a disability, you think that there’s not a cultural difference between
the two of you, you think that you’re from the same culture.
Ellen: I did.
Marin: Yeah. I did, too. I thought I was from my parents’ culture as well.
Erin: That’s really profound Marin and I think a lot of parents listening are gonna go, “Wow.”
Marin tells us a little about the Disability Pride Movement, and how important it is for parents to be a “bridge,” connecting our children to their community/culture.
We talk about the role of physical therapy as opposed to occupational therapy. The positives, and the unintentional messages sent when we push disabled kids to become as “non-disabled” as possible. This is especially understandable as parents are pressured by the medical model of disability.
Kim E. Nielsen, A Disability History of the United States (REVISIONING HISTORY) James I. Charlton Nothing About Us Without Us: Disability Oppression and Empowerment.
Defectives in the Land: Disability and Immigration in the Age of Eugenics by Douglas C. Baynton. War Against The Weak by Edwin Black.
The New Disability History: American Perspectives edited by Paul K. Longmore, Lauri Umansky and, Why I Burned My Book and Other Essays on Disability by Paul K. Longmore are best read together.
You can also check out Marin’s Amazon list. While Marin has this list on Amazon for us to view, she wants to encourage us to buy from independent booksellers.