Welcome to the Unexceptional Moms Podcast, where we offer hope and encouragement for special needs parents.
Join us in this journey as we navigate the joys and challenges of raising children with disabilities. We want you to know you're not alone.
Disability Culture and Identity Part 2
This is part two of an interview Erin and I did with our friend Main. If you have not listened to the first part. You can find the transcript and show notes HERE.
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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."
Transcript available at ellenstumo.com
Let's Talk About Disability Culture and Identity
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.
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.
But 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.
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.
We Need Better Employment Training for Our Disabled Kids
Most students who receive special education qualify for a "transitions" program that allows them to stay in school until age 21. These programs are meant to provide job training and life skills, preparing our kids to become as independent as possible. But are these programs really providing the type of training that is truly beneficial for our kids?
Join the podcast as I have a conversation with Meriah Nichols from "Unpackin Disability With Meriah Nichols."
Before talking about employment training, we go back to the beginning and discuss the role that ableism plays in the limited options made available for our kids. Also important how as parents, sometimes we also have to address our own ableism (spoiler alert: it is one of the hardest things I've had to do as a parent of two disabled kids).
A short discussion on grief, and the fact that most parents experience grief when their child is first diagnosed.
Keeping in check the language we use, and what happens to our kids when we push them to be as "non-disabled" as possible.
Finding empowerment in disability. What does that look like? How does that translate into future interests and possible job opportunities?
How important it is to discover the gifts and possibilities that are a direct result of disability -- the assets.
Inclusion: the current model of inclusion doesn't help our kids or their peers as we think about their future possibilities once they reach adulthood.
How cana. school play to a student's strengths and build upon those strengths as possible career paths?
Many programs and organizations that are meant to help our students tend to be steeped in ableism, and they do not provide ongoing change beyond one time events or experiences.
There isn't much available after transition programs because of the limited "training" they provide. Meriah shares about her recent blog post: Navigating Beyond The Four F’s of Disability Employment
How do we shift culture so that we create better "out of the box" opportunities for our children?
Our kids depend on their community -- that is, the community of individuals who are like them. The community where they belong, where they can be who they really are.
How to connect with Meriah Nichols:
Her Blog: https://www.meriahnichols.com/
Facebook: Meriah Nichols
Navigating Back-to-School Choices for Kids With Disabilities During the Pandemic
Online learning, hybrid models, or full-time school. These are the options and choices to navigate as this new school year begins in the midst of a global pandemic. What are we -- parents of kids with disabilities -- to do?
Find show notes and a transcript at: ellenstumbo.com/epsiode38/
What to Share (and Not to Share) About Your Child With a Disability
Because of social media, many people nowadays live their lives in “public.” From what you ordered at a restaurant, to rants about neighbors, to new hairdos. Everything goes… including sometimes our children’s privacy.
Bringing Together Parents of Kids With Disabilities and Disabled Adults
Ellen Stumbo, Kevin Timpe, and Carlyle King discuss the "great divide" between parents of disabled children and actually disabled individuals.
As the mom of an 8yr old with congenital muscular dystrophy I completely appreciate the culture podcast with Maren. This is eye-opening and will undoubtedly help me love my daughter better. Thanks, Ladies!!
This podcast is exceptional. Ellen and Erin are a delight to listen to. The easygoing casual banter is so disarming, and then come the questions. There are some serious topics covered insightfully and with that sense of humor that comes from direct experience. Whether you are diving into childhood disability through adoption or wading in from the other end of the pool, this is the right place.
Great show! I wish this was around when my son was younger, but never too late to learn. Thank you!