Disability Visibility

I cut it really close, but this is the final book I needed to finish out the Reading Women Challenge 2020 (this is for prompt #8 “An Anthology by Multiple Authors”). Of note, I’ll post a full compilation of all the books I read for the Challenge, and likely list some favorites of the bunch (22 total, 20 prompts plus the two bonus ones), sometime in the next week or so. But for now, let me just say, what a freaking one to end on! This collection is definitely going to be making that favorites list. (Quick shout out here to @gabriellejanesbooks for the recommendation for this one.)

Disability Visibility: First-Person Stories from the Twenty-first Century edited by Alice Wong

“Disabled people have always existed, whether the word disability is used or not. To me, disability is not a monolith, nor is it a clear-cut binary of disabled and nondisabled. Disability is mutable and ever-evolving. Disability is both apparent and nonapparent. Disability is pain, struggle, brilliance, abundance, joy. Disability is sociopolitical, cultural, biological. Being visible and claiming a disabled identity brings risks as much as it brings pride.”

I’ve gotten more into nonfiction over the last few years, and have really enjoyed a couple essay collections (we are never meeting in real life. and Stay Sexy & Don’t Get Murdered come to mind), along with some that are sort of essays and memoirs mushed together (All Boys Aren’t Blue and Dear Girls are some I enjoyed this year), but I am not really sure I’ve ever read an essay compilation/anthology by multiple authors before. So, this is new territory for me. And I am grateful to this challenge for encouraging the expansion because this particular collection was, just… I don’t know. I want to say mind-opening and educational but those words seem too trite for what it actually was. Almost every essay gave a perspective that was either totally new to me or one that I had never given much thought or considered from that particular lens. The absolute breadth of perspectives and communication types present in this collection was astonishing. I read essays, transcribed speeches/Ted talks/podcasts, poetry, collective statements and manifestos. And these were written/spoken by disabled people who have experiences of congenital diseases, degenerative diseases, traumatic injuries with lifelong consequences, disabilities that happen later in life, deaf/blind/deafblind people, people with dwarfism, people with prosthetic limbs, people with visible disabilities like being wheelchair-bound and those with invisible disabilities like chronic pain and mental illness and honestly so many more. In addition to that, the intersectionality of the authors is incredible as well, with the majority of the contributors also being minorities as far as race/ethnicity, gender/sexuality, cultural identity, religion/belief and more (within the population of the United States at least).

It’s going to be hard to try to condense all my thoughts and reactions into one review, which is one challenge of a complication that I hadn’t considered. With the diversity of topic and perspective and writer and more, I had so many thoughts and reactions. Reading this was both quick, because each essay was somewhere like 5-10 pages, which is just such a digestible length (I couldn’t stop reading “just one more essay” – see what I did there?!), and very much slowed by my need to Google every single author and read more about them and their work and, in some cases, watch their full TED talks or company promotional videos, etc.

I think one of my major takeaways, in a general sense, is the absolute clarity this collection provides about how woeful the assistance and protections that exist for disabled people are. And this is only exacerbated by the unimaginable fact that in so many cases disabled activists are having to spend effort/time fighting for their right to be alive in the first place, much less advocate for better services and accessibility and acknowledgement and everything else it would take to make it an “easier” life. Especially considering that what’s really necessary is to overhaul a society so steeped in ableism that it’s not only daunting how much needs to be fixed but also, in most cases, invisible the to general (ableist) public what is needed. Another major thing that struck me is the pervasiveness of disability across all other lines of demarcation that we normally draw in society – the socioeconomic lines, the racial/ethnic lines, the lines of education and LGBTQ+ community and religion/culture – and how universally invisible people with disabilities are, due both to willful ignorance from abled people (including within many organizations and movements that are, in so many other ways, working for the most marginalized among us) and internalized need to keep disabilities secret/hidden as much as possible by those who have them.

Reading these first-person perspectives on how the reality of these societal standards and ignorance, the way they’ve been internalized has negatively impacted so many lives was…well, it was tough. Because as an able reader, there is no escape from examining the many ways you (I) have contributed. And yet, that’s why this collection is so key. Because it not only opens to the door to perspective, knowledge and self-exploration, it also provides so many ways these issues can be addressed, on levels both small and large, with a little effort and support (of course financial, but other ways a well). There is heartbreak in these pages, as your heart goes out to what some (most) of these contributors have experienced, but there is also, even more than that, beauty in self-acceptance, joy in differences, creativity, and a wholehearted yearning for, joint commitment to, and suggestions for reaching the possibility of a better future.      

Like I said, it’s tough to read this sometimes, to acknowledge how fundamentally broken the systems are, if such a wide swath of people do not have access to getting so many basic needs met in a way that recognizes their humanity. And that’s the crux – this collection shows the voices and lives of real people who have to expend so much of their energy fighting just to prove that they, too, are human, and have the same rights to life (yup, just to prove that they deserve to be alive), much less liberty (not being institutionalized or otherwise confined) and pursuit of happiness (finding a living and a space and people that make them feel safe and loved and home) that this country purports to promise as its baseline provision for all citizens. There is so much that I had never considered before, so much that I’ve taken for granted. To that end, I appreciate the list of further reading suggestions at the end, and do plan to look into a number of them. Basically, please please please read this anthology.

I want to go ahead and take a moment to point out a few standout pieces, for me. They’re on this list for various reasons (sometimes the writing, sometimes the concepts, sometimes the perspective, sometimes all of that or more than that), but I feel like, for posterity, I wanted to note which hit me hardest. And if you’ve read this, let me know if you agree, or which ones really got to you. (Though for the record, I am not sure there are any that felt, not good(?), in any way…these are just extra spectacular standouts, in my opinion.)

Unspeakable Conversations by Harriet McBryde Johnson

The Isolation of Being Deaf in Prison by Jeremy Woody

I’m Tired of Chasing a Cure by Liz Moore

Why My Novel Is Dedicated to My Disabled Friend Maddy by A. H. Reaume

Last but Not Least – Embracing Asexuality by Keshia Scott

How to Make a Paper Crane from Rage by Elsa Sjunneson

Six Ways of Looking at Crip Time by Ellen Samuels

On NYC’s Paratransit, Fighting for Safety, Respect, and Human Dignity by Britney Wilson

Still Dreaming Wild Disability Justice Dreams at the End of the World by Leah Lakshmi Piepzna-Samarasinha

The Beauty of Spaces Created for and by Disable People by s.e. smith

And now, as you probably are not surprised by in any way, I want to share a few passages that I highlighted, in particular, while reading.

“Storytelling can be more than a blog post, essay, or book. It can be an emoji, a meme, a selfie, or a tweet. It can become a movement for social change.”

“Are we “worse off”? I don’t think so. Not in any meaningful sense. There are too many variables. For those of us with congenital conditions, disability shapes all we are. Those disable later in life adapt. We take constraints that no one would choose and build rich and satisfying lives with them. We enjoy pleasures other people enjoy and pleasures peculiarly our own. We have something the world needs.”

“…choice is illusory in a context of pervasive inequality. Choices are structured by oppression. We shouldn’t offer assistance with suicide until we all have the assistance we need to get out of bed in the morning and live a good life. Common causes of suicidality – dependence, institutional confinement, being a burden – are entirely curable.”

“When you are waiting to be healed, you reject a lasting condition; the idea that I could be disable felt like I was ignoring the magic of an all-powerful god and settling for less – the conclusion of mere mortals.”

“Sometimes it comes down to how we see out individual disabilities: Are they an intrinsic part of who we are? Or are they an identity that comes with a side of agony we would gladly give up? How do we feel when abled people start advocating for “cures” – which may come in the form of eliminating our people entirely – rather than when the desire for a cure comes from disabled advocates?”

“I am afraid to hope. I am battered by hoping. I am depressed.”

“What I’ve seen is that when people are given a chance to grow and contribute, they grow and contribute.”

“Now I understand the exchange of silence for the comfort of others as oppression…”

“Taking up space as a disable person is always revolutionary.”

“Internalized ableism is so hard to overcome partially because those beliefs are so often reinforced in society. It’s not just in our heads. It’s in our daily lives and experiences…and then it gets in our heads”

“Our lives are valuable because they’re our live. Why is this not enough?”

“Disability and illness have the power to extract us from linear, progressive times with its normative life stages and cast us into a wormhole of backward and forward acceleration, jerky stops and starts, tedious intervals and abrupt endings.”

“Where exactly is the line for my humanity? […] How can justice be attained for those of us unable to identify the source of trauma?”

“…consider that the reason to add disability justice to social justice is not just because it’s another element of diversity or representation, but rather because disability justice (and disability itself) has the potential to fundamentally transform everything we think about quality of life, purpose, work, relationships, belonging.”

“Those in positions of power, evidently fearing that people are talking about them behind closed doors, persistently insist on barging into such spaces [spaces created by and for disable people]. They call these spaces divisive, and their organizers are told that they aren’t valuing the contributions of allies. These bursts of petty outrage at stumbling upon one of the few places in the world that is not open to them inadvertently highlight exactly why such places are needed.”


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