ADVOCATE FOR INDEPENDENCE
Empowering People Through Advocacy

February 2021
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A monthly publication from our Disability Rights and Advocacy Specialist,
Patrick Ober, J.D., Ph.D.
Hello again, CILO supporters and Disability Advocates! Below is our monthly highlight of advocacy and policy issues to know and learn about related to people with disabilities and independent living.

Winter Is A Great Time to Find A Great Disability-Focused Book (For Adults AND Kids)!

It is February, which means more cold weather, plenty of snow, and lots of time spent on the couch for both kids and adults. If you are tired of yourself (or those you live with) spending too much time in front of the television screen, this is a great time to read a book!
 
On January 25, 2021, The American Library Association (ALA) announced the winners of the 2021 Schneider Family Book Awards, which honor authors or illustrators for the artistic expression of the disability experience for child and adolescent audiences. A few suggestions of great options for adults interested in reading books are also included below. Promote disability advocacy by sharing these stories with your families and communities!
2021 Young Child Winner and Honorees
I Talk Like a River - written by Jordan Scott, illustrated by Sydney Smith
Jordan Scott, poet and debut picture book author, and award-winning illustrator Sydney Smith tell an own voices story of a young boy who feels isolated and unable to communicate because of his stutter. On a bad speech day, his father takes him to the river to help him understand the beauty of his voice.

All the Way to the Top - written by Annette Bay Pimentel, illustrated by Nabi H. Ali, foreword by Jennifer Keelan-Chaffins.
This biographical children's picture book centers on Jennifer Keelan, girl with cerebral palsy fights for the 1990 passage of the Americans with Disabilities Act. To make sure it passed, Jennifer went to the steps of the Capitol building in Washington DC to convince them. And, without her wheelchair, she climbed.
Itzhak: A Boy Who Loved the Violin - written by Tracy Newman, illustrated by Abigail Halpin.
This picture-book biography of violin virtuoso Itzhak Perlman, who, despite enormous obstacles—including a near-fatal bout of polio that left him with lifelong disabilities—persevered, honing his extraordinary gift. When he performed on the Ed Sullivan Show at only 13, audiences around the world were mesmerized by the warmth, joy, and passion in every note. This book recounts and illustrates Itzhak’s childhood journey—from a boy with a dream to an internationally acclaimed violinist.

 
2021 Middle Grades Winner and Honorees
Show Me a Sign – written by Ann Clare LeZotte.
Ann Clare LeZotte, a deaf librarian and author, tells the story of Mary Lambert, a young deaf girl growing up on the island of Martha’s Vineyard in 1805 where 1 in 25 of the population is deaf. Nearly everyone can communicate in sign language. Mary has never felt isolated… until a scientist arrives to study the source of the deafness. Inspired by the true history of a thriving deaf community on Martha's Vineyard in the early 19th century, LeZotte challenges readers to question their own ideas about what is “normal.”

Get a Grip, Vivy Cohen! - written by Sarah Kapit.
Vivy Cohen wants to play baseball. Ever since her hero, Major League star pitcher VJ Capello, taught her how to throw a knuckleball at a family fun day for kids with autism, she's been perfecting her pitch. When her social skills teacher makes her write a letter to someone she knows, she writes to VJ and tells him everything about how much she wants to pitch, and how her mom says she can't because she's a girl and because she has autism. And then two amazing things happen: Vivy meets a Little League coach who invites her to join his team, the Flying Squirrels. And VJ starts writing back. 

When Stars are Scattered - written by Victoria Jamieson and Omar Mohamed.
Omar and his younger brother, Hassan, have spent most of their lives in Dadaab, a refugee camp in Kenya. Life is hard there: never enough food, achingly dull, and without access to the medical care Omar knows his nonverbal brother needs. So, when Omar has the opportunity to go to school, he knows it might be a chance to change their future… but it would also mean leaving his brother, the only family member he has left, every day. It is an intimate, important, unforgettable look at the day-to-day life of a refugee, as told to New York Times bestselling author and artist Victoria Jamieson by Omar Mohamed, the Somali man who lived the story.
2021 Teen Winner
This is My Brain in Love - written by I.W. Gregorio.
Told in dual narrative, I.W. Gregorio’s Young Adult novel is an “own voices” story exploring mental illness stigma, race and culture, and relationships. Jocelyn and Will, high schoolers who find romance while trying to keep Jocelyn’s family restaurant from failing, fight to save it all, including their relationship. Sweet, funny and full of feeling, This is My Brain in Love is a heartfelt and earnest look at mental health. Gregorio captures many truths about living with anxiety and depression in a story full of humor, wisdom and generosity.
 
Book Selections for Adults this Winter
No Pity - written by Joseph Shapiro.
Intense at times and wide in breadth, but considered the seminal, fundamental work on disability rights (and required reading for any new CILO employee!). Written as part history, part weaving personal stories of people he encountered while reporting on this story, journalist Joseph Shapiro gives a sweeping look at the changes people with disabilities have experienced over the last several decades, both in terms of legal rights and the perceptions of others.
The Pretty One – written by Keah Brown.
Born with cerebral palsy, Keah grew up with friends calling her twin sister “the pretty one.” Although it took time for her to find self-love, she found ways to embrace it regardless of how others believed she should be. This personal essay collection explores Keah’s love of pop culture, transition from self-hate to self-love, and experiences as a black and disabled woman.
Strangers Assume my Girlfriend is My Nurse – written by Shane Burcaw.
Shane is used to people viewing his life—and medical condition, spinal muscular atrophy—through a sympathetic lens. But that’s now how he views it. He finds great fulfillment in his life and reflects on his experiences with a sincere and often humorous mindset. In this collection of personal essays, Shane recounts everything from how he fell in love with his girlfriend (now fiancée) Hannah to the time he attempted to explore New York City in a dying wheelchair. Although written for a young adult audience, Strangers Assume My Girlfriend is My Nurse is a hilarious and heartfelt read for teens and adults alike.  
Up Not Down Syndrome – written by Nancy Schwartz.
Up, Not Down Syndrome reminds us that all lives matter and that all of us want to be included. That is what Nancy herself shares about her life and growing up, and that is what she’s sharing about her son. The book also shows that even with the world’s divisions being deep and wide, we can come together and support one another when challenges arise. A deeply personal story that will resonate with the reader, regardless of their personal circumstances. This book is a reminder of the importance of everyone’s life and experiences.
Recent Ohio Legislative and Policy Issues

The 2022-23 Ohio budget process has officially begun, with Governor DeWine’s budget proposal introduced at the end of January. Many issues that directly affect people with disabilities, including funding for home and community-based services, statewide access to broadband internet for everyone, funding for the Department of Developmental Disabilities, and more! Here are summaries and fact sheets of the Governor’s proposal, which has received some positive feedback (as well as a few critiques) from disability and social services organizations across the state. Continue to follow the budget process to ensure important disability-related services are well-funded!

Disability advocates across the state are renewing a call for Ohio lawmakers to change offensive language describing people with disabilities that continues to exist in many state laws and even the Ohio Constitution. Only five years ago, Ohio legislators agreed to replace the term “mental retardation” that occurred in state laws. Unfortunately, that did nothing to change other terms and phrases like “crippled children,” “deaf and dumb,” “lunatics” and “mental defective,” which occur at least 22 times in Ohio laws. Advocates have begun meeting with legislators to propose changes to those terms, and are hopeful it can occur soon. A sobering reminder, however, that disability discrimination continues to exist everywhere, and advocates must continue pushing for change.
Finally: QUICK ADVOCACY ADVICE!

If you want your voice to be heard on what services for people with disabilities need funding and why, the most effective way to do it in 2021 is to speak with your local Ohio state representative! Unfortunately, Ohio legislators voted to not allow virtual testimony at public budget hearings this year: Only written or in-person testimony can be submitted at legislative hearings, and many advocates argue that written testimony is not as effective as providing it in-person or face-to-face.

So… how do you get your testimony heard by Ohio lawmakers? An effective way is to request a meeting to speak on the phone or over zoom with your state representative or their staff. It is their job to hear the voice of their citizens and be a champion for their needs. Your representative can help make your voice heard to in the lawmaking process! A link to the Ohio state representative website is here to help you find your representative’s name and contact information.


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