123: “Special Needs” + Why Parents Need to Drop the Term w/ Kari Harbath and Disability Activist Hannah Setzer

The Rare Life

**This is the original version. A voiceover version is available on this platform. If you have hearing loss or auditory processing difficulties, or are listening in a noisy car, the voiceover version is here for you to access this awesome conversation!

Have you ever given much thought to the terminology we use to describe our medically complex kids (and ourselves)? The words we use might seem inconsequential at first glance, but I’m talking with Kari Harbath (mom to a disabled daughter) and Hannah Setzer (disabled activist), to explain why the terms we use for our kids are really important and set the tone for how disabled children and adults can move about in the world.

In this episode, Hannah describes her experience as a disabled child and now a disabled adult and why she prefers the term “disabled” instead of special needs. She and Kari also discuss how they’ve heard the term “special” used in society and why that just isn’t an ideal description for our kids.

And I want to add, this conversation isn’t about calling out or shaming anyone! We’re just here to give you another perspective and offer you an alternative to some very popular (but kind of infantilizing) terms often used in wider society. We’re so grateful that you’re here and willing to tackle topics like this with us.

Links: Watch this episode with subtitles ⁠on YouTube.⁠

Get a copy of Hannah’s book “I’ll Pray for You: and Other Outrageous Things Said to Disabled People.”

Get a copy of Demystifying Disability by Emily Ladau.

Listen to Ep 85 with Emily Ladau and Amanda Griffith-Atkins on the identity of parents related to their disabled children.

Listen to Ep 121: When Strangers “Just Ask” with disabled author James Catchpole.

Listen to Episode 10 and Episode 11 to hear Kari’s first episodes on The Rare Life.

Follow Hannah on Instagram!

Follow Kari (and Sloan) on Instagram!

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Donate to the podcast via Buy Me a Coffee.

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Join the Facebook group Parents of Children with Rare Conditions.

Access the transcript on the website here.

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