Why do Disability Pride and Disability Representation Matter? “Cursed” novelist and JIA Patient Karol Ruth Silverstein

<p><strong>Episode at a glance:</strong></p><ul><li>Karol’s experience getting diagnosed with JIA at age 13 and being angry, terrified and grumpy about it</li><li>The importance of disability representation beyond the cliche “inspirational” story</li><li>How Karol learned the importance of partnership with a doctor and taking an active role in her care in her 20s</li><li>Why Karol identifies as disabled, rather than a “person with disability” (including a discussion of the <i>#SayTheWord</i>, <i>#TheWordIsDisabled</i> movement)</li><li>How both Cheryl and Karol have confronted their internalized ableism</li><li>Why Karol wishes she had listened to her occupational therapists earlier, and why occupational therapy is so important for people with rheumatic diseases</li><li>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.”</li><li>The importance of disability pride</li></ul><p><strong>Speaker Bios:</strong></p><p>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: <a href="https://www.karolruthsilverstein.com/">https://www.karolruthsilverstein.com/ </a></p><p>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.</p><p>This episode is brought to you by <a href="https://arthritis.theenthusiasticlife.com/rheum-to-thrive/">Rheum to THRIVE</a>, an online support group and education