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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”

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    • #23390
      Kevin Schaefer


      Hey everyone! Hope you all had a safe and relaxing weekend.

      For today’s Motivation Monday post, I wanted to share this book with you all. This is a collection of essays from the New York Times disability series. The book’s contributors include people living with quadriplegia, chronic illnesses, blindness, and more. The idea is to give people with a plethora of visible and invisible disabilities a platform to share their stories. You can also find the archives from this series here.

      One of the authors is Ben Mattlin, who I’ve interviewed on the podcast here.

      I’ve read a number of these essays before, and they’re fascinating. Topics range from disability rights to navigating the world of online dating with a disability.

      Here’s an excerpt from the synopsis on Amazon: “Reflecting on the fraught conversations around disability―from the friend who says “I don’t think of you as disabled,” to the father who scolds his child with attention differences, “Stop it stop it stop it what is wrong with you?”―the stories here reveal the range of responses, and the variety of consequences, to being labeled as “disabled” by the broader public.”

      I’d love to hear if any of you have read this book, or any of the essays from it. It’s great to see this kind of media representation.

      Has anyone here read this book? Do you have any favorite essays from it?

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