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Disability Visibility
Disability Visibility: First-Person Stories from the Twenty-First Century | Alice Wong
108 posts | 50 read | 3 reading | 64 to read
One in five people in the United States lives with a disability. Some disabilities are visible, others less apparentbut all are underrepresented in media and popular culture. Now, just in time for the thirtieth anniversary of the Americans with Disabilities Act, activist Alice Wong brings together this urgent, galvanizing collection of contemporary essays by disabled people. From Harriet McBryde Johnsons account of her debate with Peter Singer over her own personhood to original pieces by authors like Keah Brown and Haben Girma; from blog posts, manifestos, and eulogies to Congressional testimonies, and beyond: this anthology gives a glimpse into the rich complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community. It invites readers to question their own understandings. It celebrates and documents disability culture in the now. It looks to the future and the past with hope and love.
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review
Chelseabillups30
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Pickpick

4.5 ⭐️

Having read 2 of 3 of Alice Wongs‘ books this year, I am in agreement with my StoryGraph app so far, she will be my most read author!!

As I read through her books I have been living in a continuous “10/10 highly recommend, this MUST be required reading no matter who you are, disabled or temporarily abled,” moment.

My complaints were about the audiobook companion, formatting and recording issues that made the listen feel incomplete.

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Chelseabillups30

Crip space is akin to a fragile natural place. 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. That protection sometimes requires sacrifice or challenge, awkward questions, but that makes it no less vital. Because everyone deserves the shelter and embrace of Crip space, to find their people and set down roots in a place they can call home.

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Chelseabillups30
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Chelseabillups30

It is very rare, as a disabled person, that I have an intense sense of belonging, of being not just tolerated or included in a space, but actively owning it; “This space,” I whisper to myself, “is for me”. Next to me, I sense my friend has the same electrified feeling. This space is for us.

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Chelseabillups30

“…..I know that when I reflect on the meaning of a “good life”, an opportunity to contribute is as important as receiving the support one needs.”

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Chelseabillups30
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Chelseabillups30
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👩🏻‍🦽👩🏻‍🦯👩🏻‍🦼🧏🏻‍♀️🦾🦿

Suet624 👏🏻👏🏻👏🏻 2w
22 likes1 comment
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Chelseabillups30

We need more disabled voices not just because disabled people are brilliant and talented and have so much to offer and say but also because disabled people face an incredible amount of dehumanizing
ableism that shapes and destroys their lives. And one of the best ways to combat that is through stories.

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Chelseabillups30
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Chelseabillups30

Give them no option but to consider your humanity.

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Chelseabillups30
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Say it louder for the people in the back!!

🗣️

(This entire chapter is full of golden nuggets of truth and wisdom, if you‘ve stacked this book from my posts of it so far, you‘ll probably want to capture and share each page of it like I have wanted to!)

Prairiegirl_reading I need to read this! Once I unpack my library! 2w
Chelseabillups30 @Prairiegirl_reading, can‘t wait to start seeing your journey through it. My library has a “Books by mail” program and I have recently gotten officially connected to it. SO glad I did because they have made it possible to make this year my year of Alice Wong. I am here for it. Loving every single second. 2w
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Chelseabillups30

My joy is my freedom-it allows me to live my life as I see fit. I won‘t leave this earth without the world knowing that I chose to live a life that made me happy, made me think, made me whole. I wont leave this earth without the world knowing that I chose to live.

Singout I really found this #SheSaid book to be interesting, and presenting an excellent breadth of perspectives and varieties of disability a few years ago. 3w
Chelseabillups30 Is #SheSaid a Litsy challenge or something? Was the book I‘m reading part of it? 3w
Singout Yes, it‘s coordinated by @Riveted_Reader_Melissa based on recommendations and votes from participants. It started with a focus on Black women writers when George Floyd was murdered, as one way to commit to learning more about anti-racism. It‘s broadened to be a way to look at other forms of oppression, one book per month, divided up by weeks and very flexible and open. 2w
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Chelseabillups30 @Singout, oh wow!! Well, I have a bunch of disability/chronic illness/trauma/mental health books I‘d recommend!! 2w
Singout Recommendation time is right now! 2w
Chelseabillups30 @Singout, I hate how Litsy does tagging of books, I can‘t figure out how to put it mid sentence, lol. But the tagged book is the next one up from Alice, so that would get my vote!! I can come up with a much longer list….to be continued… 2w
Singout Don‘t give me the list, look for she said and add your suggestions to the list there. 2w
Chelseabillups30 @Singout, made it just shy of a top 100!! 😂😅🤣 2w
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Chelseabillups30

When that doesn't work, we can remind ourselves that the absence of joy isn't permanent; it's just
the way life works sometimes. The reality of disability and joy means accepting that not every day is good but every day has openings for
small pockets of joy.

Singout My disability journal, although I haven‘t used it for a while, includes a spot for naming three good things every day. It can seem a bit hokey, but it is helpful. 3w
Chelseabillups30 @Singout, not hokey at all. There‘s science behind the positive effects of gratitude. I have had varying versions of that practice myself over the years. It‘s a healthy habit, and we could all use commitment and consistency towards any and all things that take care of us best these days!! 3w
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Chelseabillups30

I may not find joy every day. Some days will just be hard, and I will simply exist, and that's okay, too. No one should have to be happy all the time- no one can be, with the ways in which life throws curveballs at us. On those days, it's important not to mourn the lack of joy but to remember how it feels, to remember that to feel at all is one of the greatest gifts we have in life.

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Chelseabillups30

Taking up space as a disabled person is always revolutionary. To have a name is to be given the right to occupy space, but people like me don‘t move easily through our society, and more often than not survive along it‘s outermost edges.

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Chelseabillups30
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Chelseabillups30

It‘s important to have people believe in you and to expect that you‘re going to succeed. People need to have high expectations for people with disabilities because then they‘ll give them opportunities to learn and grow.

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Chelseabillups30
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Chelseabillups30

The price is simply too high to live chasing cures, because in doing so, I‘m missing living my life.

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Chelseabillups30

What I want to try is acceptance. I want to see what happens if I can simply accept myself for who I am: battered, broken, hoping for relief, still enduring somehow.

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Chelseabillups30

I have resolved that what would heal me most is making peace with my disability, to stop warring with my body. I want acceptance.

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Chelseabillups30

I come to church happy in the body I exist in; I come to church knowing that I am not a mistake waiting to be fixed. I do not come to church with a heart that is begging for the most special part of me to change. I come to church happy and whole. I come to church free.

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Chelseabillups30
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Bookwomble Disability is also a marginalised characteristic that any person can acquire via accident or illness. If only from self-interest, you'd think more people would be concerned to ensure disabled people's needs are properly considered. Obviously, compassion and empathy would be better reasons 🙂 3w
Chelseabillups30 @Bookwomble, yes and amen! As a person living with disabilities myself, I agree with you. I believe Alice would, too. 3w
Prairiegirl_reading Yes! As much as a lot people don‘t want to admit it, everyone can become part of the disability community at any time. Accessibility is for everyone not just those who “need” it. I wish more people had this foresight. 3w
Chelseabillups30 @Prairiegirl_reading, yes and amen again!! I have that conversation until I‘m blue in the face it seems. 2w
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Scochrane26
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I need some recs for a Book BY a Disabled Author.

I looked up the tagged but library doesn‘t have it on audio, & I‘m not sure I want to do physical book. This is for my library‘s book challenge. Just haven‘t found one I‘m interested in.
No romances—I‘ve been reading a lot lately, no authors that have ADHD or autism.

19 likes6 comments
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shawnmooney
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https://youtu.be/kf4nKOac9fA?si=nlIyIySZEYiiFhJA

Disabled Authors Deserve, and Demand, More by Alice Wong: https://www.publishersweekly.com/pw/by-topic/columns-and-blogs/soapbox/article/9...

A Disability Activist is Asked to Change Her Speech by Boston University Her Response by Kristen Shahverdian and Samantha Lafrance: https://pen.org/a-disability-activist-is-asked-to-change-her-speech/

Gissy I need to watch that video, you are with Kendra👌 1y
Chelsea.Poole Love Kendra! 1y
30 likes2 comments
review
RaeLovesToRead
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Pickpick

If you want to read about disability rights, this book compiles an eclectic range of essays from many different voices.

Very important reading.

⭐️⭐️⭐️⭐️

TieDyeDude Yes! Such important information. I felt the biggest takeaway is that people just want to be seen and heard. 2y
BekaReid Yes, this book was excellent. Some really powerful and thought-provoking essays were included in this collection. 2y
RaeLovesToRead @BekaReid I'm gonna check out some of the further reading in the back too, I think 2y
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RaeLovesToRead
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"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 disabled later in life adapt. We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy and pleasures peculiarly our own. We have something the world needs." - Harriet McBryde Johnson

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K.Wielechowski
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Pickpick

Such a great book!
It‘s a collection of essays by people who have a wide range of disabilities and come from a wide range of backgrounds and races. The topics very from public transportation, healthcare, family, and everyday life with a disability.

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BekaReid
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Aimeesue This was such a great book. Lots to think about. 2y
BekaReid @Aimeesue yes, it's excellent! A.H. Reaume's is one of my favorite essays so far in this collection. 2y
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Christine
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Thank you so very much for the lovely #JolabokaflodSwap gift, @AmandaBlaze ! I‘ve wanted to read this book for so long and figured I‘d need my own copy for highlighting - can‘t wait to start it! And 😋 to the chocolate in some of my favorite flavors. Thanks again.
Merry Christmas, all! ❤️🎄💚

AmandaBlaze You're welcome! Glad you enjoyed it. 3y
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Singout
Pickpick

An excellent compilation of 37 essays and reflections on disability, from a wide variety of experiences and looking at different issues: intersections with other oppressions, accessibility, mutual solidarity, incarceration, and being othered in many ways. There‘s a powerful emphasis that I appreciated as a disabled person on telling our stories and speaking our truths for one another.#Nonfiction2022 #Marvelous
#SheSaid

Riveted_Reader_Melissa I agree, I loved the variety and independence of each of these. I need more of that positive go vibe in my life. 3y
Singout It was too bad that they didn‘t have multiple readers. Hearing them all in the same voice detracted a bit from it. 3y
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Singout
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When I created #DisabledAndCute in 2017, I did so to capture a moment, a moment of trust in myself to keep choosing joy every single day. I wanted to celebrate how in this Black and disabled body I too deserved joy. The hashtag went viral and then global by the end of week two. When disabled people took to it to share their joys and stories I was floored…I might not feel joy every day, on some days I have to just exist, and that‘s OK too.

Anna40 I love that you created this 💕thanks for sharing! 3y
Singout You‘re welcome! It‘s a good article! 3y
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psalva
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Pickpick

This is a vital collection of essays and accounts which make up a cross section of many facets of the disability justice movement in the 21st century. It shows the diversity of the community and includes stories told be everyday people and those on the front lines in the disability justice movement. I respected that it included content warnings at the starts of essays which covered particularly sensitive topics.

psalva While I felt some pieces weren‘t as fully developed as others, I can‘t argue with the inclusion of any of the pieces. It‘s an excellent collection and one of the best reads this year. 3y
Reggie Great review! 3y
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Riveted_Reader_Melissa
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And I think I got a pretty good purple match here 😉

#Pantone2022
@Clwojick

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Riveted_Reader_Melissa
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Pickpick

I really really liked this collection, and I‘m so glad to whoever recommended this one to be read. I am disabled, and I learned so much more from this collection and from the immense amount of diversity of voices in this community then I‘ve heard before and found myself wishing I had connected with more voices in this community throughout my life and early years growing up and feeling alone.

#SheSaid

Aimeesue Great collection! Wong has a new memoir out, too 3y
56 likes1 comment
review
Eggbeater
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Pickpick

3rd book read for the #20in4 readathon
@Andrew65

⭐⭐⭐⭐⭐

This book made me feel connected to a community that I've never really felt a part of before. I learned about my own internalized ableism, which I didn't even know was a thing, and my eyes have been opened more to the needs of others. This was really helpful in just liberation and claiming space. I will do better because of this book.

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Riveted_Reader_Melissa
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Hello #SheSaid! I don‘t know where the month went (yet again, this year is flying)… but I‘m glad to be spending it reading with you.

Such powerful essays this week and in this whole collection…. I think the disability adaptability relation to climate change and how nature adapts was a really interesting one.

How about you? What were highlights for you?

MallenNC I‘m very glad we read this one. Like most collections, some of the essays resonated more than others but it all gave me a lot to think about regarding disability rights. I‘ve been doing an accessibility certificate course for my job so this was well timed. Our instructor uses a quote “nothing for us without us” a lot and this book captures that theme well. 3y
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Riveted_Reader_Melissa @MallenNC That is a good quote 3y
Singout I am way behind: I‘ll keep going with this one next month because I don‘t have access to lady parts. All three of the first essays were good: I really liked the description of need for intersection of disability rights with black and feminist ones, the narrative about the differing treatment of the author and her aunt with the same condition in the second one, and Leah Lakshmi Piepzna-Samarasinha is always amazing. 3y
MallenNC @Singout I liked how up front intersectionality is in this collection too. 3y
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Riveted_Reader_Melissa
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Hello #SheSaid

I‘m really enjoying these essays, I hope everyone else is too. The one with the author, explaining how she adapted to still do what she wanted..I really got a lot from that one in particular.

Riveted_Reader_Melissa Crip-time was excellent too 3y
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MallenNC I am liking this one too. I liked the two you mentioned and also Lost Cause. Both for her story and the way she turned that insulting phrase into something empowering. 3y
vlwelser I'm totally failing to keep up with this one. Sorry. 3y
Riveted_Reader_Melissa @MallenNC The one about the disabled ride service was good too! Not the urination part, but otherwise I see some of those same issues with disabled transportation services here too. 3y
MallenNC @Riveted_Reader_Melissa That one was good. I was very anxious reading it wonder what was going to happen. This was overall a great section. 3y
ncsufoxes Rebecca Cokley is someone I admire. She has worked for the Obama administration. She has also been on the podcast Be an Antiracist which she discussed disability rights. I just finished About Us (disability stories from the New York Times) & they had a story about the subway too about how dysfunctional it is for a disabled person to be able to depend up especially when you work on NYC. How the elevators don‘t work half the time, so it‘s near 3y
ncsufoxes impossible to get around. I couldn‘t imagine if you were visiting & didn‘t know how badly the accessibility is. 3y
Riveted_Reader_Melissa @ncsufoxes the subway was built so long ago, long before the ADA…. unless it‘s changed since…. I remember some stops not even having elevators (stairs only) so you would need to go to the next stop and then backtrack by “walking”. Maybe not so horrible if you a motorized wheelchair (and a full power pack), but not great if you have a walking disability…. And not convenient or helpful either way. 3y
Riveted_Reader_Melissa “New York has lagged for years behind other major American cities in making its subway system accessible to people with disabilities: Just 126 of its 472 stations, or 27 percent, have elevators or ramps that make them fully accessible.” ⤵️ 3y
Riveted_Reader_Melissa “But on Wednesday, the Metropolitan Transportation Authority said it would add elevators and ramps to 95 percent of the subway‘s stations by 2055 as part of a settlement agreement in two class-action lawsuits over the issue” ⤵️ 3y
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Riveted_Reader_Melissa
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Hello #SheSaid

Sorry for the delayed start today!

Roughly halfway through this one already, how‘s everyone doing with it. I like the diversity we are getting with the different stories, but it also breaks it up more than a cohesive memoir.

MallenNC Being a collection of essays this is different from a memoir in its depth for sure. I like hearing from a variety of voices, and I like that there is a lot of intersectionality in this. I liked the essay about Selma Blair a lot, and the one by Haben Girma about guide dogs. I read her memoir a few years ago, and it was great. 3y
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psalva I would love to be added to this tag, if you don‘t mind. I have the book from my library but I am behind in starting it, unfortunately. Nonetheless, I‘d like to see what everyone is thinking about it. 3y
vlwelser I really like how diverse the essays are. I'm not totally finished with this week's selection but I am glad we are reading this. 3y
Riveted_Reader_Melissa @psalva I will add you, read when you can and just drop into the discussion as you finish a section. These posts are here and can be visited anytime. 3y
MilesnMelodies Can I be added? 3y
Riveted_Reader_Melissa @MilesnMelodies Yes you can, I‘ll add you to the tag list. Welcome 3y
ncsufoxes Really behind on my posts but I wanted to add to the conversation. Most people that are able bodied don‘t ever imagine what it‘s like to be disabled. But as we age and other medical events happen we are all at risk of being medically labeled as disabled. In America we sometimes blame people for their disabilities. Meaning we make things challenging as a society, like ADA compliance. As a society we like to hold up people that have “overcome” their 3y
ncsufoxes disability & say look that person can do it, why can‘t you. Now because of advocates like Alice Wong & countless others that are raising awareness & wanting their space & their stories heard more people are being heard. As a mom of an Autistic child I have become an advocate for him because I have realized I have to fight for his needs & rights. Schools, doctors, society, & so on aren‘t always understanding or helpful. Disabled people before me 3y
ncsufoxes have been able to pave the way so that I can learn from them & help my son as we are on this unexpected journey. 3y
Riveted_Reader_Melissa @ncsufoxes Speaking from personal experience here… but a Disabled Child‘s best advocate is their mom. My mom fought for me with doctors & teachers and by her example I slowly learned to fight for myself and recognize my own limits and be made less likely to feel I had to push myself past them to please society‘s norms and able bodied peoples expectations. Disabled children without the support network of family growing up are at such a ⤵️ 3y
Riveted_Reader_Melissa ↪️disadvantage because our society not only believes the you can “happy attitude” and “pull up by your bootstraps” out of anything, but also is terrible about listening to children and authentically believing them. I‘m very glad your son has you. (edited) 3y
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Singout

Sandy Ho: It wasn‘t until the early 1980s, for example, that the Chinese characters used to refer to people with disabilities changed from “canfei,” “useless,” to “canji,” “sickness”…Media professionals in China are now encouraged by the Chinese disability advocacy organization One Plus One to use the characters “cán zhàng” (“disabled and obstructed”) when reporting on disability issues.

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Riveted_Reader_Melissa
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Hello #SheSaid!

New month, new book!

Definitely some powerful mini-stories and essays in here.

What touched you the most?
For me it was Chasing a Cure, and Deaf while incarcerated

ravenlee I‘m out for this month, please - overwhelmed at the moment! 3y
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Riveted_Reader_Melissa @ravenlee Take care of you! Whatever is going on, I hope it gets better soon. 3y
ravenlee Thank you. It‘s all good stuff (and good reading!) - just a lot of it. 3y
Riveted_Reader_Melissa @ravenlee Then enjoy! And don‘t worry about it.😉 3y
vlwelser I'm not finished yet but this is surprisingly readable. I keep googling the authors to get additional background. 3y
MallenNC I‘m a little behind because of library due dates on other books but I like that this is an own voices collection. I will get caught up! 3y
ncsufoxes Deaf while in Prison is a shocking & infuriating story. I still can‘t believe that this happened in 2013. I still get so shocked to hear when people are denied basic services/needs like a sign language interpreter. People forget how much the ADA gets ignored. Ibrahim X. Kendi said in one of his podcasts, civil rights are as much about disability rights as disability rights are a civil rights. The two are intersecting & intertwined. 3y
ncsufoxes I always have to remind myself that the ADA was only passed in 1990, but it‘s also frustrating that 32 years later people are still fighting for basic rights. In every story or book I read about disability rights or stories there is a lot of individuality to each story but also a lot of similarities. There are overriding themes of people not being believed or blamed for their disability. If they try harder they can overcome it. As a society we 3y
ncsufoxes love to hear a success story of how someone overcame something but will push back when people ask for basic & legal rights (like access to voting booths, which is something that is still not fully accessible to most disabled people). I am happy that books like this continue to make their way into the world so that they can be discussed & we can learn from what others have experienced. 3y
psalva @ncsufoxes I just finished Part 1, and I totally agree with your point about the ADA being so recent. The essay about being deaf in prison is a great example of the point of Kendi‘s which you bring up, especially if you consider race disparities in incarceration rates and that 1 in 5 have a disability of some sort. 3y
psalva @ncsufoxes As you say, I am also glad to learn from what others have experienced. Also, @Riveted_Reader_Melissa I‘m grateful this book was brought to my attention from this read-along. I‘m very engaged by all of the essays so far, particularly the Common Cyborg, which, for one, gets at the disparity between tech which disabled people need and can‘t always access easily vs. tech which the general public uses and is often more easily accessible. 3y
37 likes13 comments
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LitsyEvents
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reposted for @Riveted_Reader_Melissa:

Hello #SheSaid! Next schedule is up for October! Put in your library holds and interlibrary loans!

original post is here:
https://www.litsy.com/web/post/2473988

#BuddyRead

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Riveted_Reader_Melissa
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Hello #SheSaid! Next schedule is up for October! Put in your library holds and interlibrary loans!

35 likes6 comments
review
jen_hayes7
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Pickpick

Difficult to read at times and at other moments incredibly uplifting. I think this book is one that everyone should read. Sharing a page that I strongly relate to. #readharder2022

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jen_hayes7
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Perfect way to spend a Sunday morning. #readharder2022

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jen_hayes7
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Really looking forward to this book. I‘m sure parts of it will be difficult to read (and appreciate the trigger warnings at the start of each piece). #readharder2022

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tenar
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Today I have 4 recommendations from my favorite books that fulfill quite a few challenges in April‘s #DisabilityReadathon!

•The group read is Disability Visibility, which contains some of the best disability writing I‘ve ever read.

•A poetry collection, from a deaf author: The Perseverance by Ray Antrobus. Explores biracial identity, a difficult father relationship, & deaf experiences. The most memorable contemporary poetry I‘ve read in a while.

tenar •By an autistic author, middle grade, and from the reading list: A Kind of Spark by Elle McNicoll. An autistic girl fights for a memorial commemorating women tried as witches in her town. Loved it.

•A book centered on invisible disability: The Sound of a Wild Snail Eating by Elisabeth Tova Bailey, on fatigue, snails, and meaning-making. A post-viral memoir, which I believe is an experience we should all take the time to understand these days.
3y
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Hooked_on_books
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Pickpick

I really appreciate this book for the voice it gives to people living with disabilities and the opportunity for others to hear those voices. I really like the mix here—each author‘s focus is a little different, which keeps this interesting and gives it good emotional balance. This is really worth your time.

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Auntynanny
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Pickpick

This anthology was so interesting and informative! I've never read an entire collection by disabled writers before. I look forward to reading more from all of the authors in this book!

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Andrea313
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I've been very slowly reading this collection and am not quite ready to write a full review; but I am definitely ready to shout from the rooftops how important this book is! This blurb from the publisher nails it: "This anthology gives a glimpse of the vast richness and complexity of the disabled experience... It invites readers to question their own assumptions and understandings."
#ConflictedWorlds #Disability
@Eggs @Alwaysbeenaloverofbooks

ChaoticMissAdventures This book is so important and needed. And just incredibly good to boot. 💜 4y
Eggs Perfect 👌🏼📚👏🏻 4y
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