Disability Visibility: First-Person Stories from the Twenty-first Century

“…paid what is known as ‘subminimum wage.’ It is still legal to pay disabled people for piecework, or pennies for the hour…” (due to an egregious exemption: section 14(c) in the [American] Fair Labor Standards Act)

“…if you can’t fast, give…”

O you, who believe. Fasting is prescribed for you as it was prescribed for those before you, that you may become Al-Muttaqun (the pious). (Fasting) for a fixed number of days, but if any of you is ill or on a journey, the same number (should be made up) from other days. And as for those who can fast with difficulty, (i.e. an old man, etc.), they have (a choice either to fast or) to feed a poor person (for every day). But whoever does good of his own accord, it is better for him. And that you fast, it is better for you if only you know.” (Qur’an, 2:183-84)

“who can…” -It's not offered by a human (from a hadeeth). It’s bestowed by Allah (from the Quran)

Astonishingly, disability is the least significant marker of Disability Visibility: First-Person Stories from the Twenty-first Century, a remarkable anthology on adversity, endurance and triumph. People (perceptive people) will want to elevate individuals in this book to superhuman endurability, but it is recognition enough to know: no human being is ever more sovereign than this.

The content notes are a best practice I invite the publishing industry to consider aspiring towards or at least being cognizant of albeit that profanity is as offensive as any a content note.

As this month marks the 30th anniversary of the Americans with Disabilities Act, this seemed like a good read. I had seen author Wong on Twitter and while essays are not really my thing, figured it seemed like a good pickup. This is a collection of essays from various disabled people who discuss different aspects of their lives. From romance to working in a job to how they became disabled (for some) to how they cope, etc. People of various genders, sexual orientations, races, places in their lives, etc.

Overall I agree with the negative reviews. Essay collections are always hit or misses with me. There are several really good pieces of writing here. But for every one good piece, there are several others that could have used a better editor, maybe more thought or perhaps were really not the right fit for this type of book (for example, there's a TED Talk which may or may not work for you as text-only).

In the end, though, it was an important read and there will be people out there who will see themselves or someone they know in these essays and these writers got their pieces published. And I also appreciated that many of these pieces also have content notes, as the text deals with everything from ableism to racism to misogyny to sexual assault, etc.

This was a book that was best for me as a e-book read. Would recommend as a library borrow. ( )

There are some powerful authors in this collection. Wong is the founder of The Disability Visibility Project. In this time when so many with disabilities find it even harder to get help readers will get a variety of essays exposing inequalities. There’s an essay about the inequality of health care for native people. There’s another very eye-opening about how patients are vulnerable in the hospital in which the author works. Things like finding adaptive clothe, and the high rats of disability among LGBTQ people. This isn’t the book with the answers, this is the book that should start discussion about the inequalities and how people with disabilities should expect more and deserve more. ( )

Shelf Awareness

Should be required reading for everyone, especially those of us who are abled.

See also: It's Not About the Burqa (ed. Mariam Khan) and A Map Is Only One Story (ed. Nicole Chung and Mensah Demary)

Quotes

"Stories are the closest we can come to shared experience....Like all stories, they are most fundamentally a chance to ride around inside another head and be reminded that being who we are and where we are, and doing what we're doing, is not the only possibility." -Harriet McBryde Johnson (quoted in Alice Wong's introduction)

The social science literature suggests that the public in general, and physicians in particular, tend to underestimate the quality of life of disabled people, compared with our own assessments of our lives. (Johnson, 20)

...choice is illusory in a context of pervasive inequality. Choices are structured by oppression. (Harriet McBryde Johnson, 20)

The peculiar drama of my life has placed me in a world that by and large thinks it would be better if people like me did not exist. My fight has been for accommodation, the world to me and me to the world. (Johnson, 26)

I received conflicting messages: God does not make mistakes; everything God creates is perfect; God corrects the things that are imperfect. (June Eric-Udorie, 55)

[The social model of disability states that we are disabled by society and lack of access rather than by our bodies] (Liz Moore, 75)

Sometimes it comes down to how we see our 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? (Moore, 76)

People need to have high expectations for people with disabilities because then they'll give them opportunities to learn and grow. People don't grow in...institutions. (Ricardo T. Thornton Sr., 87)

What I've seen is that when people are given a chance to grow and contribute, they grow and contribute....I believe that people can do do anything if they're given the opportunity and support. (Thornton, 88)

People seem to have an innate ability to say the worst possible thing at exactly the wrong time where illness is concerned. (Diana Cejas, 106)

...whenever and however I'm confronted by the stigmas of disability...the expectation is that my reaction should be muffled and then tucked away. (Sandy Ho, 112)

Now I understand the exchange of silence for the comfort of others as oppression... (Ho, 113)

...cultural values validate the narrative of worthy versus unworthy bodies. But the entire discussion needs to be rewritten... (Ho, 115)

Taking up space as a disabled person is always revolutionary. (Ho, 115)

Internalized ableism - the insidious belief that I would be a better person if I were not disabled - makes me feel like an imposter as a mother. (Jessica Slice, 130)

I show my anger, but that anger comes with a distinct expectation of compassion... (Elsa Sjunneson, 138)

Independence is a fairy tale that late capitalism tells in order to shift the responsibility for care and support from community and state to individuals and families. (A.H. Reaume, 155)

It is hard to be a pro-choice disabled person who understands that believing in bodily autonomy means you have to support the idea that other people...may choose to abort a pregnancy because their child could be like you. (Rebecca Cokley, 161)

The right to decide what happens to our bodies is a fundamental principle in the disability community, and with good reason. (Cokley, 161)

When I lost my sight, I noticed that I didn't have access to the same amount and quality of information a sighted astronomer had. (Wanda Diaz-Merced, 171)

The concept of entitlement is familiar jargon in discussions of race and class, and it is just as widespread in the realm of disability. It's the idea that we are acting as if someone owes us something rather than merely asking to be treated with the respect and human dignity we deserve. (Britney Wilson, "On NYC's Paratransit," 210)

...just knowing your rights (or your worth or value) will never be enough if you are powerless to force someone else to respect them. (Wilson, 217)

..statistics prove that at least 60 to 80 percent of the people murdered by police are...Disabled and/or Deaf people. (Harriet Tubman Collective, 237)

I thought about how huge we have become over the past fifteen years, since the term disability justice was invented...and yet still how invisible we are if you do not know how to find us. (Leah Lakshmi Piepzna-Samarasinha, 257) ( )

Disability Visability is an anthology which brings together a variety of perspectives from disabled people on the 30th anniversary of the Americans With Disabilities Act. Some of the pieces were written specifically for this anthology while others appeared previously in print or online. As with many such collections, this is somewhat of a mixed bag. All of the pieces are clearly written from a place of passion about each author's individual experience of disability. However, some of the writers are far stronger than others, and for every stand-out article there are a handful that at minimum needed another draft to reach their full potential. Still a worthwhile read. ( )