Five Ways to Keep Showing Up - Disability Pride Month & Beyond

Having a disabled kid doesn’t mean you failed as a parent. Sounds obvious enough, right? But there are so many of us who drape unspoken shame around our spirits. We learn anything “wrong” needs “fixing” - and this includes human beings. I know.  We’re all surrounded by the same abelist logic; the neurodiversity movement is helping many of us (especially parents) shift into seeing differences as strengths. I wrote about that a while back in 5 Benefits of Being a Neurodiversity Affirming Mama.

Disability Pride Month gives us another pathway to unlearm abelism.

Although established by former New York City Mayor Bill DeBlasio in recognition of the 25th anniversary of the Americans with Disabilities Act back in 2015, according to Enabling Devices, disability pride events started years earlier, with the first “Disability Pride Day’ held in Boston in 1990, and a Disability Pride Parade organized in Chicago in 2004,  as Nancy DeVault documents in AmeriDisability. 

In a world telling us and our kids, in numerous ways, you don’t matter, how else can we uplift disability pride beyond marching in parades?

I am sharing five calls to action to lean into continually, because disability rights and justice are daily issues (as we all know through lived experience): 

1. Ditch Ableism: One of the first questions many of us are asked after giving birth is if a baby is “healthy.” It’s a standard check-in, but if we think more deeply about what is behind this question for many of us, there is a learned way of valuing people - healthy = “good”  and any kind of “defect” or challenge to one’s health = bad.

Although we are hearing the term ableism more in multiple spaces, discrimination against people with disabilities isn’t new; its existed for thousands of years across many societies. “Ableism, as defined by activist Talila A. Lewis, is a system that assigns value to individuals based on societal notions of normalcy, productivity, desirability, intelligence, excellence, and fitness. Ableism affects everyone — regardless of their disability status,” Daphne Frias, disability rights activists, tells us.

We know disability is not some aberration, it’s common. Let’s unpack the stats: 1 in 10 children, worldwide, lives with a disability, as cited by the U.N. And here in the U.S., 1 in 10 children has a developmental disability, while 1 in 4 adults is disabled, according to the CDC.

Moving beyond the dominant paradigm of seeing differences as deficits which need “correcting” is essential, and while we need to do this internal work of uprooting ableism within ourselves, we cannot stop there; we must push for the dismantling of abelism within every space - institutions like schools, churches and organizations and our own day-to-day interactions with family and friends.

In researching for this article, I discovered an informative list of ableism examples from Healthline:

• believing people with disabilities have less value and worth

• assuming they want to be “healed” or can “overcome” a disability

• suggesting they’re “inspirational” for handling everyday activities and routine tasks

• assuming they lead an unhappy, limited life

• assuming they can’t do things for themselves

• using words like “normal” and “healthy” to describe non-disabled people

• asking intrusive questions about someone’s disability

• touching someone, or any equipment or devices they use, without permission

• ignoring requests for accommodations or refusing to acknowledge someone’s disability

• refusing to use the terms someone requests, like “deaf person,” “neurodivergent,” or “wheelchair user”

• using ableist language, especially after someone asks you to stop

2. Learn and Unlearn by Listening to Disabled Voices: We cannot begin to unlearn ableism without listening to disabled voices.

Read books by disabled writers (absolutely love this list curated by a disability rights activist, Daphne Frias), explore offerings like The Neurodiversity Podcast, follow and learn from disabled activists and advocates on social media (some of my favs are on this list), @neurodivergentlou.. And connect with my dear friend and fellow Mama warrior Jenna James, founder of @chroniclyconnectedperspective who thoughtfully uplifts the intersections of oppression and discrimination within the disabled community and beyond.

Check out Ido in Autismland: Climbing out of Autism’s Silent Prison (on audio in Apple Books) which opens a window into non-verbal autism through dozens of short, autobiographical essays each offering new insights into autism symptoms, effective and ineffective treatments and the inner emotional life of a severely autistic boy. In his pithy essays, author Ido Kedar, a brilliant sixteen year old with autism, challenges what he believes are misconceptions in many theories that dominate autism treatment today while he simultaneously chronicles his personal growth in his struggles to overcome his limitations.

Makayla’s Voice, is another powerful insight into the world of non-verbal people: “Makayla, a teenage girl, has spent her life grappling with a rare form of autism that rendered her essentially nonverbal. However, her parents, filled with unwavering belief in their daughter's potential, embarked on a transformative journey to discover the true depth of Makayla's inner world. When a breakthrough came into their lives in the form of letter board therapy, this finally provided Makayla with the means to communicate. As her voice gradually emerges, the audience is invited into a world of wonder, poetry, and brilliance that was once hidden from sight. Learn more here.

Stacey Park Milbern was a disability rights organizer who worked constantly to raise awareness about disability reminds us the work of advocacy and activism includes the work of transforming our society in the film, My Body Doesn’t Oppress Me, Society Does:

“I really like separating out impairment from disability…So impairment as physical or neurological manifestation. Like what’s real. I have a physical impairment. And disability is what society creates as a barrier because of impairment. When I am in a place where my access needs are being met, then my impairment isn’t so significant.”

3. Read & Share Kids Books Centering Disability: Our kids deserve to see themselves reflected in the books they read. And far too often, their lived experiences are erased. Four years ago, in The Current State of Disability Representation in Children’s Books, Margaret Kingsbury uplifted a troubling statistic: “According to the Cooperative Children’s Book Center’s 2019 study, only 3.4% of children’s books have disabled main characters. Compare this statistic with the CDC’s finding that 26% of Americans have disabilities, and it’s easy to see there’s a problem.”

Mamas, you and I can become part of the solution within our communities by sharing children’s books that are out there currently - with our kids, and our friends who have non-disabled kids to broaden understanding, empathy and support. Check out this list of 20 books that shatter stereotypes about disability, including I am Not a Label: 34 Disabled Artists, Thinkers, Athletes and Activists from Past and Present by Carrie Burnell, illustrated by Lauren Mark Baldo

A Day With No Words is a colorful and engaging picture book for young readers shares what life can look like for families who use nonverbal communication, utilizing tools to embrace their unique method of "speaking."The story highlights the bond between mother and child and follows them on a day where they use a tablet to communicate with others. Written by an autistic mother of two autistic sons and the creator behind the popular @Fidgets.and.Fries social media platform and illustrated by Kate Cosgrove (IG @k8cosgrove), A Day With No Words successfully normalizes communication methods outside of verbal speech and provides representation of neurodiversity and autism in a way that affirms and celebrates.

4. Advocate not just for your child (and yourself, if you’re living with a disability), but the disability community as a whole: Yes, we absolutely must advocate for our kids! But our work doesn't end here, as a global society, change is required on a systematic level.

There are several organizations I am following who center advocacy of the disability community, showing up in the fight to sustain Medicaid, SNAP and other vital programs: The Arc, Penn-Mar Human Services (serving Maryland and Pennsylvania) and Disability Rights Fund.

Disability Visibility Project is a powerful community and resource hub which publishes original essays, reports, and blog posts about ableism, intersectionality, culture, media, and politics from the perspective of disabled people, builds online spaces for people to share, organize, and connect, champions disability culture and history, organizes and facilitates events, gives presentations, participates on panels, supports and amplifies the work of other disabled people and organizations in the community using social media, partners and collaborates with other activists and organizations in various campaigns such as #CripTheVote, #CripLit, Access Is Love, and DisabledWriters.com.

Check out their syllabus to seeing the connection between what is happening in Palestine with disability rights and justice. Because multiple genocides and wars - Palestine, Congo, Sudan, Tigray, and Ukraine are mass disabling events.

Every day, the U.N. tells us, 1 in 10 children in Gaza looses a limb. Congolese children and families, who mine the cobalt and coltan which powers our cell phones and other electronic devices, pick through rubble for these precious mineral (you can about it here on @congofriends.

“Approximately six million people have been killed since 1996, and more than six million people remain internally displaced in eastern DRC, journalist Shola Lawal, writes in A Guide to the Decades Long Conflict in the DRC. Supporting organizations like Friends of the Congo and IHeartAfrica.org is an act of community care.

Sudanese writer and digital creator, Tysir Salih, raises awareness through her Instagram page and other writing about the ongoing civil war there (which is the largest displacement on earth), along with organizations doing work on the ground to assist children and families like Sudanese American Physicians Association.

Everyday, I am learning this motherhood journey which lives outside the box, is an invitation to deeper compassion, empathy, learning and unlearning, mindfulness and deep listening.

May we all step into this invitation. It’s beautiful here.