Why do Disability Pride and Disability Representation Matter? “Cursed” novelist and JIA Patient Karol Ruth Silverstein
Karol Ruth Silverstein shares her experiences growing up with JIA (Juvenile Idiopathic Arthritis) and how that inspired her to write her award winning young adult novel Cursed. Karol and Cheryl discuss the importance of disability representation in books and media at large. They also delve into the disability pride movement.
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Show Notes
Episode at a glance:
- Karol’s experience getting diagnosed with JIA at age 13 and being angry, terrified and grumpy about it
- The importance of disability representation beyond the cliche “inspirational” story
- How Karol learned the importance of partnership with a doctor and taking an active role in her care in her 20s
- Why Karol identifies as disabled, rather than a “person with disability” (including a discussion of the #SayTheWord, #TheWordIsDisabled movement)
- How both Cheryl and Karol have confronted their internalized ableism
- Why Karol wishes she had listened to her occupational therapists earlier, and why occupational therapy is so important for people with rheumatic diseases
- Excerpts from Karol’s award winning young adult novel “Cursed,” about a young woman with JIA who is “frank, funny and full of f-bombs.”
- The importance of disability pride
Speaker Bios:
Karol Ruth Silverstein is a children's book author and screenwriter. She was diagnosed with juvenile rheumatoid arthritis at 13 and has identified as disabled since 21. Originally from Philadelphia, she now lives in West Hollywood with her two exceptionally fully cats. You can find her website at: https://www.karolruthsilverstein.com/
Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.
This episode is brought to you by Rheum to THRIVE, an online support group and educational program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected.
Medical disclaimer: All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.\
For full episode links go to: https://arthritis.theenthusiasticlife.com/2021/07/14/why-do-disability-pride-and-disability-representation-matter-with-cursed-novelist-and-jia-patient-karol-ruth-silverstein/
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