Our Shared Shelf discussion

I haven't seen the book for our Jan/Feb 2021 pick focusing on disability awareness, but I thought I might suggest Fading Scars by Corbett Joan O'Toole for anyone looking to jump into something? I haven't read it myself but I plan to start it soon.

Thanks Jo.

We'll be reading

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

I'll post an announcement soon!

Otherwise, our wonderful and amazing Community Engagement Leader Tristen has created this phenomenal list of other books to add to your book shelves.

" I have attached a book list that includes many nonfiction books on disability.

To be clear, I have not read all of these. I wrote a note next to each what disability is featured in the book, in case someone wants to learn more about a specific experience. There are also extra notes if I knew the author was a person of color or LGBTQIA+ (I may have missed a few for books I have have not read, but I identified quite a few). I also noted if an author was not writing about their own experience, such as a journalism, scientific, or biography book."

Disability Nonfiction

KEY
* POC
**LGBTQIA+

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

Sitting Pretty: The View from My Ordinary, Resilient, Disabled Body by Rebekah Taussig (paralysis due to cancer)

Brain on Fire: My Month of Madness by Susannah Cahalan (NMDA-receptor encephalitis)

Broken Places & Outer Spaces: Finding Creativity in the Unexpected by Nnedi Okorafor (scoliosis, paralysis) *

Wow, No Thank You by Samantha Kirby (Crohn’s) * **

Sonata: A Memoir of Pain and the Piano by Andrea Avery (RA)

The Bell Jar by Sylvia Plath (this is semi-autobiographical, mostly reflecting the author’s life, so, yes, I’m leaving it here with the other memoirs) (mental illness, hospitalization)

When They Call You a Terrorist: A Black Lives Matter Memoir by Patrisse Khan-Cullors (mental illness told from the perspective of sister, outlines well the difficulty in getting help from a broken system; note that this is not the only focus of the book) * **

Kid Gloves: Nine Months of Careful Chaos by Lucy Knisley (emergency difficult birth, graphic novel)

Marbles: Mania, Depression, Michelangelo, and Me by Ellen Forney (bipolar, graphic novel) **

Heart Berries by Terese Marie Mailhot (mental illness, hospitalization) *

Find Another Dream by Maysoon Zayid (CP) *

Prognosis: A Memoir of My Brain by Sarah Vallance (brain injury)

Rosemary: The Hidden Kennedy Daughter by Kate Clifford Larson (biography about Rosemary Kennedy, intellectual disability)

Sick: A Memoir by Porochista Khakpour (lyme) * **

Rx by Rachel Lindsay (bipolar- graphic novel)

The Pretty One: On Life, Pop Culture, Disability, and Other Reasons to Fall in Love with Me by Keah Brown (CP) *

Too Late to Die Young, Nearly True Tales from a Life by Harriet McBryde Johnson (congenital neuromuscular disease)

Invisible: How Young Women With Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine by Michele Lent Hirsch

Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann (polio, paralysis)

Haben: The Deafblind Woman Who Conquered Harvard Law by Haben Girma (Deafblind) *

The Girl from Aleppo: Nujeen’s Escape from War to Freedom by Nujeen Mustafa (CP) *

The Collected Schizophrenias: Essays by Esme Weijun Wang (schizophrenia) * **

About Us: Essays From the Disability Series of the New York Times by Peter Capatano

The Ladies Handbook to Mysterious Illness: A Memoir by Sarah Ramey

Disfigured: On Fairy Tales, Disability, and Making Space by Amanda Leduc

Autism in Heels by Jennifer O’Toole (autism)

Odd Girl Out: My Extraordinary Autistic Life by Laura E. James (autism)

A Mind Spread Out on the Ground by Alicia Elliot (metal health, part memoir/ part discussion of connection between colonial trauma on Native people and mental illness) *

Ask Me About My Uterus: A Quest To Make Doctors Believe in Women’s Pain by Abby Norman (endometriosis)

Feminist, Queer, Crip by Alison Kafer **

Pain Woman Takes Your Keys and Other Essays From a Nervous System by Sonya Huber (chronic pain)

The Cancer Journals by Audre Lorde (breast cancer) * **

Fading Scars: My Queer Disability History by Corbett Joan OToole **

What to Look for in Winter: A Memoir in Blindness by Candia McWilliam (blind)

Such a Pretty Girl: A Story of Struggle, Empowerment, and Disability Pride by Nadina LaSpina (polio) *

Falling for Myself by Dorothy Ellen Palmer (congenital anomaly of the feet)

Care Work: Dreaming Disability Justice by Leah Lakshmi Piepzna-Samarasinha * **

Hello I Want to Die Please Fix Me: Depression in the First Person by Anna Mehler Paperny (depression)

On Being Ill by Virginia Woolf (essay about taboos surrounding illness, author had mental illness) **

A Disability History of the United States by Kim Nielsen

The Story of My Life by Helen Keller (Deafblind)

Infinity Net: The Autobiography of Yayoi Kusama by Yayoi Kusama (schizophrenia) *

From the Periphery: Real-Life Stories of Disability edited by Pia Justesen

Sex Matters: How Male-Centric Medicine Endangers Women’s Health and What We Can Do About It by Alison McGregor

There is a lot of material to read! Thanks for that list. I hope everyone will be able to get their hand on, at least, one of those books!

Here are additional titles to add to the list.
I just want to underscore that I have not read most of these books. All of the books (on both of these lists together) are by disabled authors about their own experience with disability. Some discuss disability justice and some do not go beyond discussion of that individual's lived experience.

Resistance and Hope: Essays by Disabled People edited by Alice Wong *

Thinking in Pictures: My Life with Autism by Temple Grandin (autism)

Golem Girl: A Memoir by Riva Lehrer (spina bifida) **

Show Me Where It Hurts: Living With Invisible Illness by Kylie Maslen (chronic pain)

Not Fade Away: A Memoir of Senses Lost and Found by Rebecca Alexander (Usher Syndrome, blindness, deaf)

Not A Poster Child: Living Well With a Disability: A Memoir by Francine Falk-Allen (polio)

Mermaid: A Memoir of Resilience by Mary Eileen Cronin (born without legs)

Not All Black Girls Know How to Eat: A Story of Bulimia by Stephanie Covington Armstrong (bulimia) *

How to Disappear Completely by Kelsey Osgood (anorexia)

Now I See You: A Memoir by Nicole Kear (blindness)

Fall to Pieces: A Memoir of Drugs, Rock’n’Roll, and Mental Illness by Mary Forsberg Weiland (bipolar)

Girl, Interrupted by Susanna Kaysen (mental illness, hospitalization)

The Quiet Room: A Journey Out of the Torment of Madness by Lori Schiller (schizophrenia)

Typed Words, Loud Voices edited by Amy Sequenzia (AAC users)

All Better Now: A Memoir by Emily Wing Smith (brain tumor)

The Bright Hour: A Memoir of Living and Dying by Nina Riggs (terminal cancer)

The Unwinding of the Miracle: A Memoir of Life, Death, and Everything That Comes After by Julie Yip-Williams (blindness, terminal cancer) *

Mean Little Deaf Queer: A Memoir by Terry Galloway (Deaf) **

Limbo: A Memoir by A. Manette Ansay (muscle disorder)

Good Things Out of Nazareth by Flannery O’Connor (posthumous letters include some about her life with lupus, but book does not focus on that)

Take Me Home From the Oscars: Arthritis, Television, Fashion, and Me by Christine Schwab

Believe Me: My Battle with the Invisible Disability of Lyme Disease by Yolanda Hadid

Exile and Pride: Disability, Queerness and Liberation by Eli Clare (CP) **

Bodies and Barriers: Queer Activists on Health by Adrian Shanker **

Growing Up Disabled in Australia edited by Carly Findlay

For anyone that uses Audible, members have access to that large "Plus Catalog" of free books. A few of the books on the list here are free on the Audible catalogue:

Exile and Pride: Disability, Queerness and Liberation by Eli Clare
Rosemary: The Hidden Kennedy Daughter by Kate Clifford Larson
Now I See You: A Memoir by Nicole Kear
(Possibly?- Find Another Dream by Maysoon Zayid)
It's Not What It Looks Like by Molly Burke (blindness)-- not on the list above

Hi! I’m new to the group and looking for different kinds of books to read too. I’m also an author and have my own book about my disability and have a picture book about my disability coming out soon. My book is called Unbreakable: My Life with DiGeorge Syndrome and Defeating the Doctors Odds. Anyway, it is a memoir, and it’s available on Amazon. But I’m very curious about other people with disabilities, too!

I don't know if the word disability in this discussion group is just limited to physical and mental health problems. If that is the case, I would suggest we talk also about the emotional disability of humanity as a whole too.

There is more animality in humans and more humanity in animals, it seems in modern day world. (Animality has a negative connotation, as used by humans, when it should not be the case.) Wars, hunger, inequality, illiteracy, social divide, human caused climate change and the list is endless.

There is no limit to human greed. Individualism is on triumph. Negative energy is filling people's mind.

There are few beacons of hope left in the world today. As writers, we should talk about them and glorify them.

Kinchit wrote: "I don't know if the word disability in this discussion group is just limited to physical and mental health problems. If that is the case, I would suggest we talk also about the emotional disability..."

You might like the book Parable of the Sower by Octavia Butler. In that book, the author created a main character with a disability called hyperempathy where she can feel others' emotions. It's fiction set in the near future, but in the same vein of what you are talking about. It's am intense book though, a lot of violence (if that triggers you be careful).

Kinchit wrote: "Wars, hunger, inequality, illiteracy, social divide, human caused climate change and the list is endless."

Appreciate the comment Kinchit.

You're welcome to touch on any of those topics as long as the frame is through physical and mental disability. For example, in our book, Jeremy Wood wrote about how time in prison is isolating, but the addition of being deaf in prison without available interpreters forced him to miss out on medical treatment, parole options, and human connection.

I don't want us to loose focus this month as too often disability is pushed to the side or removed completely for the sake of other injustices.

Tristen wrote: "Kinchit wrote: "I don't know if the word disability in this discussion group is just limited to physical and mental health problems. If that is the case, I would suggest we talk also about the emot..."

Thanks Tristen. Will look into your suggestion.

Stay safe.

Pam wrote: "Kinchit wrote: "Wars, hunger, inequality, illiteracy, social divide, human caused climate change and the list is endless."

Appreciate the comment Kinchit.

You're welcome to touch on any of those..."

@Pam: Personally, I feel disability is not a state of the body or mind of someone, but how others make that person feel (who are in majority).

Kinchit wrote: "Personally, I feel disability is not a state of the body or mind of someone, but how others make that person feel (who are in majority)."

That sounds an awful bit like "I don't see color" when talking about race. Aka, it sounds like a nice platitude, but what you are doing is erasing that person's experience and what they deal with each day because of the thing you deem invisible.

By saying you think disability is how others treat a person is to disregard a disabled person's pain and all of the barriers they deal with on a daily basis.

But I welcome those who are disabled to tell me if I'm off base.

Annie wrote: "Kinchit wrote: "Personally, I feel disability is not a state of the body or mind of someone, but how others make that person feel (who are in majority)."

That sounds an awful bit like "I don't see..."

Firstly, if my comments have hurt you, then I sincerely apologize.

On race, I will say when people start to see the colour of shadows they might start to forget the colour of skin. Humans have classified themselves (nations, colour, religion and more) into so many categories that they have forgotten that they are humans first.

On me showing disregard to a disabled person, I will disagree. And this is something I cannot justify on internet with words. It is something that I have to prove with my acts on a daily basis.

And, very last, difference of opinion should not mean a difference of heart. So, please take care of yourself and stay safe :-)

What I would say is that I know a lot of people who are disabled, especially those who become physically disabled later in life, go through some process where they accept themselves as disabled. This can take many different forms or different amounts of time. It generally has nothing to do with others, but with their acceptance of themselves.

I personally went through something like this. I was not having trouble with accepting I was disabled exactly. I accepted I was disabled in general fairly easily. I had to accept that I was going to be okay with being in a wheelchair forever and not continue to try and fail at walking over and over. I accepted where I was and that was hard. I wanted to focus on other things and how to enjoy them as I am. That meant giving up on going back to old me. I used to hike 20 miles a week before I got sick. Now I would never share that with my son and he would never know the old me. None of that has to do with anyone else.

Disability is as foundational a part of my identity as being mother to me or being a woman. This doesn't change based on someone else's perception, because these are truths I can tell myself. Saying that disability depends on the perception of non-disabled people is discounting not only my experience, but the ability to lay claim to my own identity. This is especially true in a world that is far from accessible or equitable for disabled people.

There is so much wrapped up in the identity of disability that is hard to translate to someone who has never been disabled, but it might be similar to accepting you are any other core part of you (heritage, religion, sexuality). People often times also get community through acceptance or new avenues of purpose or creativity.

In Disability Visibility there is one essay I can think of off the top of my head that talks about this acceptance somewhat called "I'm Tired of Chasing a Cure" by Liz Moore (pg 75)

Looking for a new read? I HIGHLY recommend "The Purpose" by Munni Trey. It's had me on the edge of my seat for days now, I cannot wait to see how it wraps up all the craziness! You can find it here:
https://www.audible.com/pd/The-Purpos...

Kinchit wrote: "Annie wrote: "Kinchit wrote: "Personally, I feel disability is not a state of the body or mind of someone, but how others make that person feel (who are in majority)."
Annie wrote: "Kinchit wrote: "Personally, I feel disability is not a state of the body or mind of someone, but how others make that person feel (who are in majority). That sounds an awful bit like "I don't see color" when talking about race."

I know it has been a super long time since everyone left this conversation, but I feel like I did not answer this very well, and it has bothered me. So I'm just going to clarify.

To the question of whether disability is a social construct, the answer is actually yes and no. As my previous answer indicated, disability is very much a reality and part of a person's identity. However, it is a construct in that we have created that inequality physically (barriers), systemically, and mentally (the way we think about people with disabilities). So theoretically, in a world in which 1) we removed all barriers to accessibility for everyone in all situations, 2) we created systemic change to give people with disabilities the resources they need to have an even footing with non-disabled people, AND 3) we did not think any differently about anyone with a disability than their non-disabled peers-- then disability would no longer exist. That is surely something to strive toward, but we are not very close. Especially when not even hospitals are fully accessible. So until then, disability most definitely is a reality.

I think the less barriers that exist though, the closer we get to that idea, even if I won't see disability disappear in my lifetime. I mean, ADA laws (laws to start requiring accessibility in USA) were only passed in 1990. That's not that long ago, so change is possible faster than it seems. And technology always broadens these possibilities.