What Medicine Gets Wrong About Disability with Ashira Greenberg & Shauna Ikahihifo

Knock Knock, Hi! with the GlaucomfleckensNov 3 · 1 hr 12 min

Episode Description

I failed my very first standardized patient encounter in medical school because I saw a 49-year-old woman with abdominal pain and did not order a pregnancy test — immediate fail, well-earned shame, lesson learned — and it turns out that story is actually a pretty good entry point to this episode about what standardized patient education is, what it's missing, and what Ashira Greenberg and Shauna Ikahihifo are doing to fix it. Ashira is a full-time mobility device user and disability advocate who grew up loving hospitals because, as her kid brain correctly reasoned, hospitals are built for people on wheels; Shauna is an autistic woman who was diagnosed at 33 after an 11-year diagnostic odyssey in which she lost the ability to speak for weeks during a burnout episode and was told it was just the worst anxiety her doctors had ever seen. They're co-founders of the disability Special Interest Group within the Association of Standardized Patient Educators (ASPE), and their Lived Experience Project is specifically about getting neurodivergent and disabled standardized patients into medical training encounters so students hear actual feedback from people who know what it feels like to be on that side of the room — because 42% of medical schools have zero disability content in their curriculum, 80% of physicians don't believe their disabled patients have a good quality of life, 1 in 4 disabled people has no regular PCP, and putting a medical student in a wheelchair for an afternoon and calling it disability education is not the answer. The further I get into my career, the more I believe communication is at least as important as diagnosis, and this conversation made that feel more true than ever.

Takeaways:

Pain scales are almost unusable for many neurodivergent patients
80% of physicians don't believe disabled patients have a good quality of life
The social model of disability reframes the question
Simulating disability is not the same as understanding it
1 in 4 disabled people has no regular primary care physician

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