“‘I’ll take all night if I have to,’ she vows. And she keeps heaving… hauling… dragging herself up those steps.” — All the Way to the Top (2020)
July is Disability Pride Month!
The celebration is a tradition that started in New York City with a parade to mark the July 26, 1990 signing of the Americans with Disabilities Act.
That means just over 30 years ago discriminating against someone because they had a disability was often completely legal.
It’s not easy to change a law, but social and cultural change can come even slower. I know because I’m still learning how to be an ally and I’ve been intensely interested in disability rights for more than a decade.
Here are three books that I’ve found most helpful to educate myself, as well as five of my favorite books for children. Many of them are written by disabled creators. Check them out from your local library, buy them from your local bookstore or simply follow these affiliate links to Amazon. (As an Amazon Associate I earn from qualifying purchases.)
Books on disability for adults:
About Us, essays by various authors, edited by Peter Catapano: Taking its name from the disability rights slogan “Nothing about us without us,” this book is a reprinting of columns from a New York Times series. The writers speak candidly about a range of disabled experiences — which are certainly helpful perspectives for parents and others raising disabled children.
Disability Visibility, essays by various authors, edited by Alice Wong: In this collection of essays, I especially enjoyed Harriet McBryde Johnson’s account of participating in debates on whether parents should have the right to allow the baby she had been to die. (Wong also has a newsletter and a new memoir coming out soon.) Disability Visibility is also available in a version for young adults.
Being Mortal, by Atul Gawande: This is not marketed as a book about disability, however, as an able-bodied person it helped me realize that disability justice issues are nearly universal. Almost everyone will become disabled toward the end of their life or care for someone who becomes disabled. By that time, people are often too frail or discriminated against to effectively advocate for themselves. This very readable book is a wake-up call that disability rights are not only the moral thing to do but also a more personal issue than most people imagine.
Books on disability for kids:
A kids book about disabilities by Kristine Napper: A Kids Book About is a publishing company founded in my hometown, Portland, Ore. They publish all kinds of books about tough topics. This one is a great way to introduce kids to ways of talking to disabled people and why it’s impolite to stare.
We Move Together by Kelly Fritsch and Anne McGuire: This delightful book for elementary kids shows why it’s best when everyone is able to access the same things.
Not So Different: What you really want to ask about having a disability by Shane Burcaw: Kids are curious and that’s OK. In this book they get the answers to many of their questions — even the ones that aren’t polite to ask.
Someone Special Just Like You by Tricia Brown: I really like this book for preschool-aged kids. The pictures and use of “special” are a little dated but it shows disabled kids in relatable environments — at home, blowing bubbles, in the park.
All the Way to the Top by Annette Bay Pimentel: This book follows the journey of disability rights activist Jennifer Keelan-Chaffins. As a child, her iconic climb to the top of the steps of the Capitol Building in Washington, D.C. helped cement the push to pass the Americans with Disabilities Act.
Do you have any favorite books on disabled life for adults or kids? Let me know in the comments or by replying to this email.
A version of this story ran on July 18, 2021.
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Queen Creek Tribune (Arizona): “Queen Creek family finds relief with new law”
For families of medically fragile children, help has arrived.
[Arizona] Gov. Doug Ducey signed the Family Licensed Health Aide Program into law in March 2021. More than a year later, the Arizona Board of Nursing and Arizona Medicaid has certified approximately 50 parents now trained under this program, including one in Queen Creek.
Colby Kostur, regional vice president of operations for Team Select Home Care, said this program will help these families cope with personal financial burdens and the nursing shortage at large.
[…]With [mom] Brandilyn [Coon] now certified as an LHA working for $16.50 an hour and clocking in 32 hours per week, the program as made a tremendous difference for the family.
She said the biggest concern among families like hers is the divorce rate among the parents due to the stress from issues such as finances.
But along with counseling and this new program, she said she and her husband feel fortunate to have this help compared with those struggling as single parents.
“It’s been a major financial relief, to say the least, to have this income come through, and so that my husband doesn’t feel complete burden for our family,” she said.
• From Willamette Week: “Major Autism Services Provider to Close in Oregon”
The Center for Autism and Related Disorders informed state officials last week it will close its 10 Oregon clinics in August, resulting in the layoff of 156 staff members.
Texas-based CARD is the largest provider of an autism treatment called applied behavior analysis. Tobi Rates, executive director of the Autism Society of Oregon, says that although the therapy is controversial in some circles, it qualifies for broad insurance coverage from both private and public payers.
“It’s a big deal,” Rates says of the closures.
The widespread and growing prevalence of autism spectrum disorder—1 in 44 8-year-olds have it, according to the U.S. Centers for Disease Control and Prevention—has attracted investors to the field. The Blackstone Group, a leading private equity firm, purchased CARD in 2018 for a reported $600 million.
• From Disability Scoop: “Data Suggests Autism Rate Is Still Growing”
New research finds that autism prevalence among U.S. children is continuing to rise.
In a study looking at data on more than 12,500 kids ages 3 to 17 across the country, researchers determined that 3.14% had autism.
[…] Boys were nearly three times more likely than girls to be on the spectrum, according to the study findings. And, there was a “significant difference” in prevalence based on a family’s economic status with lower income children more likely to have autism.
The overall autism rate identified in the study is significantly higher than other estimates in recent years.
• From The Times of India: “AICTE model institutes to ensure inclusivity of disabled children”
The All India Council for Technical Education (AICTE) is in the process of transforming some of the affiliated institutions into model institutes for physically challenged students.
The institutes will ensure the inclusivity of physically challenged students in the mainstream education system. The Office of Accessible Assistive Technology (OAAT) will be set up in each of the model institutes that will be instrumental in helping disabled students.
Different categories such as Cognitive, Locomotive, Visual and Hearing Impairment have been slotted to help the students. AICTE aims to create at least 5 model institutions by the end of this year.
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Do you have a question about raising disabled kids that no one seems to be able to answer? Ask me and it may become a future issue.