Pam’s Comments (group member since Dec 29, 2016)

Pam’s comments from the Our Shared Shelf group.

Share your thoughts about Split Tooth and The Yield! Reviews and ratings welcome!

Hello OSS!

"We carry our ancestors on our backs,” says Tara June Winch, of her fellow Indigenous authors (Interview with Sian Cain, The Guardian). “We write these stories with our worlds on our shoulders. And that is our burden, for all First Nation writers around the world. All our stories seem really similar because we can’t escape them. These problems, these things that need to be fixed, they’re our stories.”

To explore more of what Winch means, we will be reading two Member Chosen Books this month; one depicting the Aboriginal people in Australia in Winch's The Yield and Tanya Tagaq's Split Tooth Inuit heroine from Northern Canada.

Both books center around coming of age tales for young women where their world is threatened. Navigating these changes will require them to evaluate how they can move forward while also preserving the worlds on their shoulders.

We'll see you around the forums to discuss your thoughts and feelings.

-The OSS Mods

--------------------
Throughout March and April we will be reading:

The Yield


Split Tooth

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.

As Alice Wong, editor of Disability Visibility: First-Person Stories from the Twenty-first Century explains in her introduction:

[This] "is not Disability 101or a definitive "best of' list. You may be unfamiliar with some terms or uncomfortable with some ideas presented in this book - and that's a good thing! These stories do not seek to explain the meaning disability or to inspire or illicit empathy. Rather they show disabled people simply being, in our own words, by our own accounts."

We're curious as to what your learned and what made an impact on you?

Feel free to share your reviews below OR share thoughts from chapters that made you pause.

My older sister, Kelly, was born with developmental and physical disabilities.

As the younger child the story has been one that I didn't learn completely for some time. But essentially my sister came a month early and my mother's normal OBY-GN was not available. The doctor who was present for the birth claimed that my mother failed during labor and caused all of my sister's medical and mental issues.

For years my mother feared having another child because she was told that she caused my sister to be strangled at birth, caused her brain to be malformed and destroyed her larynx which ruined her vocal cords and left her mute.

We only found out after I was born some years later that the doctor was being sued by multiple other families for malpractice. It was during this time that my parents found out that the doctor had a history of drug use and was not sober for the years during when my sister was born, He later confessed to multiple accounts in which his use of surgical implements or force damaged more than one child.

So when I think of Disability Justice I tend to focus more on the people who have wronged individuals more than what Tristen mentioned in another topic regarding social or medical accessibility.

Kelly is aware enough that she knows that this wasn't supposed to happen to her but I do not know if she has been able to work through that pain. (Because of her label of being in the MRDD program, the State tried to keep her at a 1st grade level, but she literally pushed and ended up finishing with her 5th grade diploma) Growing up was extremely hard for her when she saw her younger siblings surpass some of her achievements to the point where without the ability to communicate she would utilize one of the only things she could control and physically harm herself in order to catch our attentions or show that she was angry.

Kelly has grown up and is now in one of the most amazing mental and development disability programs in our state. She is living with other members of her community in a 5 person home which has around the clock care. Being in HER house with HER friends and chosen family I know has helped a lot.

COVID has not helped though. She has not been able to go to work and has been stuck at her home. It's driving her a bit bonkers, especially cause it's winter here and she cannot get outside.

Let's use this topic to cover additional resources that can help us understand and build upon what we learn from the book.

Feel free to drop links, organizations, or influencers here.

Well said Mara.

Paula wrote: "It talks about really tough parts of chilean history. Being chilean, it hit me really hard because we deal with the consequences of the Military Coup and Pinochet's dictatorship till today.
Also we just voted to change the Political Contitution forced on us during this period, it feels like we're finally getting through that part of our history. It was super appropiate for me to read it during this time in Chile."

I would love to explore this more with you or other Chilean OSS members.

I had no real understanding of this period of history. And I have to add I was getting goosebumps over how similar some of these issues came to be in the last couple of weeks. I kept reading more to see how it turned out.

Allende is of course, related to Salvador Allende who was the socialist leaning President who served before Pinochet's dictatorship. This was love letter to Chile on a deeply profound level that I did not realize before.

Hello OSS Members!

For January and February we will be reading Disability Visibility by Alice Wong as we explore the topic of Disability Awareness.

According to the World Bank, one billion people, or 15% of the world's population, experience some form of disability, and disability prevalence is higher for developing countries. Some are visible, some are hidden—but 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 an urgent, galvanizing collection of personal essays by contemporary disabled writers. Taken together, this anthology gives a glimpse of the vast richness and complexity of the disabled experience, highlighting the passions, talents, and everyday lives of this community. It invites readers to question their own assumptions and understandings while celebrating and documenting disability culture in the now. It looks to the future and past with hope and love.

Our Community Engagement Leaders Tristen and Erika explain why this book was chosen:

"With this book readers get to hear first-person viewpoints on a wide variety of disabilities and a wide variety of disability justice issues. I also like that this is very recently published and that a lot of care was taken in the curation of voices to ensure that there was diversity among the backgrounds of those invited to share (although they do generally reflect USA experiences). I like that this book is written in personal stories that are easy to connect with and has lots of resources that can act as a springboard should someone be further interested in a certain topic."

Thank you for joining us! And as always, we are excited to hear what you think!

- The OSS Mods

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

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!

Hello OSS,

2020 is over, but learning never ends here at Our Shared Shelf. Last year we asked the community what topics you wanted to explore together. The most requested written in response was on Disability Awareness.

Intersectional Feminism reminds us that we can experience overlapping, concurrent forms of oppression due to our gender, sexuality, race, weight, etc. In an ableist culture, discrimination can take many different forms as nuanced and bold as we have seen in other circumstances.

To help us understand more about this subject, I've asked a couple of OSS friends to take on the role of Community Engagement Leaders for these next two months. They will help us learn more about Disability Justice and guide us to a deeper understanding. Please join me in welcoming Erika and Tristen!

Erika:
Hi everyone,
My name is Erika (she/her), I became disabled at 29 (4 years ago), during a brain tumor resection I suffered a massive stroke, and that’s when my new life journey began. Education is my passion, I’m not currently teaching but I am volunteering and continue to educate others on disabilities and inclusion. I just received my wonderful service dog Kate, as I am hemiplegic, she allows me to be so much more independent by assisting me and I looking forward to what the future holds for us (www.cci.org).

Tristen:
Tristen (she/her), 32, is a disabled mother of a disabled child. She has been involved in disability movements through activism, art, and writing. Pregnancy nearly a decade ago left her and her son, born premature at 1.4lbs., both suddenly disabled. She primarily uses a wheelchair. She no longer works as a marine biologist, but is focused on rocking motherhood.


A big thanks to Erika and Tristen for sharing their insights and passion on this topic.

Veronica wrote: "Why am I still getting notifications for this disgusting thread? This gross regurgitation of thoroughly outdated and debunked texts - written by people other than the OP - is the antithesis of femi..."

Like anyone here, Evgeny is allowed to express their opinion. If you want to discuss the ideas expressed, feel free to do so. But you will follow our code of conduct.

Please note that Goodreads does not have a system in place to change notifications per topic. Should you want to never receive these postings you would need to leave OSS as well.

Thanks for the add Ben.

All UK members are welcome to join in on this.

Hello OSS,

For November and December, our members have chosen to read The House of the Spirits by Isabel Allende.*

This work of fiction is considered one of the most important and beloved Latin American works of the twentieth century. Allende's debut novel is part autobiography, part homage to the indomitable lives of women. Woven with elements of myth and realism, the novel centers around three generations of women and their struggle for political and personal freedoms.

Almost 40 years later readers will find the characters, as well as their decisions, still contemporary.

Happy Reading!

-The OSS Mods

*:Trigger Warning: Graphic content; violence against women.

Which quote or scene left an impression (good or bad)? Share your favorite quote or scene here as well as what it means to you.

Share your thoughts about the book here! Reviews and ratings welcome!

Welcome ladies!

You're just in time as we're about to start our latest book .

Juliane wrote: "The best feminist novel I know is The Power by Naomi Alderman it's AMAZING"

Hello Juliane! OSS agrees with you! We read The Power two years ago. Check out the discussions here ---> https://www.goodreads.com/topic/group...

When talking about police brutality, it is important to remember that the police force can be trustworthy public servants to one community, and oppressors to another community–just as we can live in a country that promotes prosperity for some and poverty for others."

"People of color are not asking white people to believe their experiences so that they will fear the police as much as people of color do. They are asking because they want white people to join them in demanding their right to be able to trust the police like white people do."

Questions for the Group:
- How did you feel after reading this chapter? Do you agree or disagree with Oluo's conclusions?
- There have been lots of discussion on Defund the Police or to increase funding for police training. What is a citizen to do?