MS Book Review: Disability Visibility
I cannot express just how much I love Disability Visibility: First-Person Stories from the Twenty-First Century (DV).1
I appreciate the way this book organizes its 38 essays by four themed sections:
In a sense, this unfolding describes my own journey with MS:
- Diagnosis (being)
- Discerning limits — presumed and real (becoming)
- Adapting life goals (doing)
- Joining the chronic illness community (connecting)
About the editor
Alice Wong has lived her entire life dealing with the shortcomings of a post-ADA (Americans with Disabilities Act) culture which promises accommodation, but doesn’t always deliver. Wong lives with a neuromuscular disorder known as spinal muscular atrophy.
For the ADA’s 25th anniversary in 1990, she sought to celebrate by contributing in a way that would:
- Showcase disabled experience stories that honor both present and past
- Elevate the voices of ordinary people with disabilities
- Focus on diversity in the mainstream representation of disability
The Disability Visibility Project
From this, she created the Disability Visibility Project, recording and curating oral histories for the Library of Congress archive.2
The DVP now embraces that archive of oral histories as well as an online community, podcast, social media, and more. Wong’s reverence for community shines through in her introduction in DV, wherein she summarizes how:
- Community is political
- Community is magic
- Community is power
- Community is resistance
Wong lives her values
For instance, she belongs to the trio who brought #CripTheVote to life.
She aligns with peers like Nicola Griffith, the author who launched #CripLit to rally an international following of disability writers and thinkers, and s.e. smith of DisabledWriters.com, who actively confronts systemic barriers in the journalism community.3,4
Wong also published Resistance and Hope in 2018, a free anthology of work by activists and artists exploring the relationship between resistance and hope in these times.5
All of these efforts have culminated in DV.
So many great essays!
I offer these highlights from some of my favorites. All of them hold relevance for those of us with MS.
I’m Tired of Chasing a Cure (Liz Moore)
The first paragraph drew me in.
“Are you better yet? Get well soon. Race for a cure. Pray for a cure.”
I love Moore’s discerning criticism of the C word (i.e. cure) and how its use may benefit healthy people more than the disabled. Her remarks about the power of accepting one’s MS are spot on.
Selma Blair Became a Disabled Icon Overnight. Here’s Why We Need More Stories Like Hers (Zipporah Arielle)
Controversy exists among people with MS about Blair’s public representation of the disease. I feel Arielle’s tribute makes a great case for brutal honesty from celebrities with MS while in the public eye.
To Survive Climate Catastrophe, Look to Queer and Disabled Folks (Patty Berne, as told to and edited by Vanessa Raditz)
If you’re tired of 2020’s popular “sky is falling” lament, it’s likely that — thanks to MS — you’ve already crossed over from “old” normal to new. Berne awards your MS “survivor’s wisdom” relevance and value during trying times.
The Beauty of Spaces Created for and by Disabled People (s.e. smith)
This beautiful rendering, of a night out at a dance performance featuring wheelchair artists, profoundly moved me.
“Crip space is akin to a fragile natural place,” smith writes. “It must be protected in order to preserve the delicate things within, while remaining open to change with the seasons and the passage of time.”
Alice Wong is my new hero. She possesses an amazing ability to just go for it, in a Field of Dreams “build-it-and-they-will-come” kind of effort.
I’ve participated in various forms of activism since 1981. One thing I’ve learned — different personae gravitate to the world of change agency. Among them are driven automaton types who literally don’t live in moments that aren’t 110 percent sign-making, marching, or letter writing. Granted, it’s necessary work, but it’s not the only effective way to affect change.
In January 2017, one of these types tried to shame me for not going to the Women's March in Seattle. Because of MS “stuff” (IBS-D and sensory overload), I decided that dealing with crowds in spaces without bathrooms promised more burden than benefit. I marched in my pink pussy hat in a short parade in my small town instead. I was still shamed for “wimping out,” for not marching with my daughters.
I'm not motivated by guilt
As a woman, wife, mother, and writer (and maybe because I’m GenX), I’m not motivated by guilt to do more and better. I do plenty, and it’s good enough.
Alice Wong resides deep within the “do what you can, however you can, when you can” camp. She’s one of many emerging leaders of the “resistance” who honestly and humanely represent me as a person with chronic illness. I’ll follow activists and leaders like these to the ends of the earth.
Please buy and share this book widely.
How many specialists did you see before finding "The One"?