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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.’”


This topic has 6 replies, 5 voices, and was last updated 3 months ago by Brianna Albers.

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    • #23452
      Brianna Albers
      Keymaster

      Happy Friday! I’m toying around with the idea of running a book club via my Substack that features disabled writers. In other words, we’d be reading either books by disabled writers or books that feature disabled characters. I know some of you are big readers, so I figured I’d see if y’all have any recommendations. Definitely let me know! 

    • #23461
      Tracy Odell
      Participant

      I have a few:

      <span style=”text-decoration: underline;”>Too Late to Die Young: Nearly true tales from a life</span> by Harriet McBryde Johnson, is her memoirs from growing up with SMA in the US. Available from Amazon.

      <span style=”text-decoration: underline;”>Being Heumann: An Unrepentant Memoir of a Disability Rights Activist</span>, by Judith Huemann with Kristen Joiner, Hueman grew up with polio in the US. Available from Amazon or Kindle

      <span style=”text-decoration: underline;”>Find Another Dream</span> by Maysoon Zayid, is her memoirs from growing up with cerebral palsy in the US. Available from Amazon.

      <span style=”text-decoration: underline;”>It’s Not What It Looks Like</span>, by Molly Burke is her memoirs from growing up with retinitis pigmentosa, a form of blindness.

      <span style=”text-decoration: underline;”>The Pretty One</span> by Keah Brown, who grew up with cerebral palsy.

      <span style=”text-decoration: underline;”>Laughing at My Nightmare</span> by Shane Burcaw, who has SMA. Other titles by Burcaw: <span style=”text-decoration: underline;”>Strangers Assume My Girlfriend Is My Nurse</span> and <span style=”text-decoration: underline;”>Not So Different: What You Really Want to Ask About Having a Disability</span>

      <span style=”text-decoration: underline;”>Falling for Myself</span> by Dorothy Ellen Palmer who grew up with two very different and very tiny feet.

      <span style=”text-decoration: underline;”>Reading Willing and Disabled</span> by Norman Kunc, available from Amazon. Also his newer book, <span style=”text-decoration: underline;”>Being Realistic isn’t Realistic</span>

      <span style=”text-decoration: underline;”>From Behind the Piano</span> and <span style=”text-decoration: underline;”>What’s Really Worth Doing and How to Do It</span> by Judith Snow who grew up with SMA. Book is available from inclusion Press https://inclusion.com/product/from-behind-the-piano-the-building-of-judith-snows-unique-circle-of-friends-and-whats-really-worth-doing-and-how-to-do-it-a-book-for-people-who-love-someone-labeled-disabled-now-in-1-bo/

      <span style=”text-decoration: underline;”>Disfigured: On Fairy Tales, Disability, and Making Space</span> by Amanda Leduc examines how disability is treated in fairy tales. Read about Disfigured in the Quill & Quire. https://quillandquire.com/authors/amanda-leducs-disability-justice-critique-of-fairy-tales-speaks-to-our-own-ableist-society/

      YA book covers featuring disabled teens hitting shelves this year. Books are about disability but not necessarily written by people with disabilities https://bookriot.com/2020/01/13/disability-representation-on-ya-book-covers/

      <span style=”text-decoration: underline;”>Voice: Adam Pottle on Writing with Deafness</span> by Adam Pottle. There are millions of us, he says, and we have something important to say. You can read the review of Adam Pottle’s Voice  https://www.stratfordbeaconherald.com/entertainment/books/book-reviews-adam-pottle-paul-hanley-robert-bringhurst-and-jan-zwicky/wcm/9e2bd316-b7a9-47ef-8916-18690b99e9cb or buy Voice: Adam Pottle on Writing with Deafness on Amazon https://www.amazon.ca/Voice-Adam-Pottle-Writing-Deafness/dp/0889775931

       

    • #23470
      Holly
      Participant

      This Is Not A love Scene by S.C. Megale both the author and the main character have SMA

      Accidents of Nature, which takes place at a disabled summer camp by Harriet McBryde Johnson, a notable disability rights activist

      Good King Bad Kings by Susan Nussbaum, another activist, about a nursing home for disabled kids (kinda dark)

    • #23473
      Holly
      Participant

      sorry forget one
      The Girl From Aleppo, its a memoir from Nujeen Mustafa, a girl with cerebral palsy, who fled Syrian war in a wheelchair

      bonus: Just The Way You Arm by Alison M Boot, I have not read it yet. It seems to be a fantasy romance. I don’t know if its good or not.

    • #23474
      Patrick Lenihan
      Participant

      Christy Brown’s “Down All The Days” and “My Left Foot”

      Ben Mattlin’s “Miracle Boy Grows Up” and “In Sickness and in Health”

    • #23477
      Kevin Schaefer
      Keymaster

      I’ve read both of Mattlin’s books. They’re great.

    • #23495
      Brianna Albers
      Keymaster

      Thanks, all! These are great suggestions.

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