Follow My Leader by James B Garfield is a book from my childhood I am very fond of. It's for ages 8 - 12. I haven't reread it as an adult so I don't know how it stands up.
It is about a boy who goes blind when he is playing with fire crackers with his friends. It follows him from his injury, to going through life skills camp, to getting a guide dog, and eventually dealing with a bully.
It was first published in 1957, 33 years before the Americans with Disabilities Act was passed into law. "The Braille Technology Timeline" doesn't start until 1971.
Despite this, I find myself thinking that if every child had read this book growing up there would be a lot (edit: LESS, forgot LESS) of internet bullshit along the lines of, “buT hOw Do yOU uSe a cEll pHonE iF yOu’Re bLinD”.
There have always been allies who care about people with disabilities, and, alongside them, have worked to improve access and accommodations as society presses forward. Blind people do not live cruel and unfulfilling lives trapped at home and deprived of the world and technology. The attitude that they do comes from a failure to see the support systems, including friends and family, which have been present from the beginning.
And that's my justification for continuing to deeply love and strongly recommend this book from 66 years ago.
I love books, I love literature, and I love this blog, but it's only been recently that I've really been given the option to explore disabled literature, and I hate that. When I was a kid, all I wanted was to be able to read about characters like me, and now as an adult, all I want is to be able to read a book that takes us seriously.
And so, friends, Romans, countrymen, I present, a special disability and chronic illness booklist, compiled by myself and through the contributions of wonderful members from this site!
As always, if there are any at all that you want me to add, please just say. I'm always looking for more!
Updated: 12/08/2023
The Drifting Language of Architectural Accessibility in Victor Hugo's Notre-Dame de Paris, Essaka Joshua, 2012
Early Modern Literature and Disability Studies, Allison P. Hobgood, David Houston Wood, 2017
Making Do with What You Don't Have: Disabled Black Motherhood in Octavia E. Butler's Parable of the Sower and Parable of the Talents, Anna Hinton, 2018
Necropolitics, Achille Mbeme, 2003 OR Necropolitics, Achille Mbeme, 2019
Wasted Lives: Modernity and Its Outcasts, Zygmunt Bauman, 2004
Witchcraft and deformity in early modern English Literature, Scott Eaton, 2020
10 Things I Can See From Here, Carrie Mac
Akata Witch, (Series), Nnedi Okorafor
A Mango-Shaped Hole, Wendy Mass
An Unkindness of Ghosts, Rivers Solomon
A Shot in the Dark, Victoria Lee
A Snicker of Magic, Natalie Lloyd
A Song of Ice and Fire, (series), George R. R. Martin
A Time to Dance, Padma Venkatraman
Bath Haus, P. J. Vernon
Beasts of Prey, (Series), Ayana Gray
Black Bird, Blue Road, Sofiya Pasternack
Cafe con Lychee, Emery Lee
Cinder, (Series), Marissa Meyer
Clean, Amy Reed
Connection Error, (Series), Annabeth Albert
Crazy, Benjamin Lebert
Crooked Kingdom, (Series), Leigh Bardugo
Dear Fang, With Love, Rufi Thorpe
The Degenerates, J. Albert Mann
Everyone in This Room Will Someday Be Dead, Emily R. Austin
The Extraordinaries, (Series), T. J. Klune
The Extraordinary Education of Nicholas Benedict, (Series), Trenton Lee Stewart
The Final Girl Support Group, Grady Hendrix
Forever Is Now, Mariama J. Lockington
Fortune Favours the Dead, (Series), Stephen Spotswood
Fresh, Margot Wood
Harmony, London Price
Highly Illogical Behaviour, John Corey Whaley
Honey Girl, Morgan Rogers
How to Become a Planet, Nicole Melleby
I Am Not Alone, Francisco X. Stork
The Immeasurable Depth of You, Maria Ingrande Mora
In the Ring, Sierra Isley
Iron Widow, (Series), Xiran Jay Zhao
Izzy at the End of the World, K. A. Reynolds
Josee, the Tiger and the Fish, (short story) (anthology), Seiko Tanabe
Just by Looking at Him, Ryan O'Connell
Lakelore, Anna-Marie McLemore
Learning Curves, (Series), Ceillie Simkiss
Let's Call It a Doomsday, Katie Henry
The Library of the Dead, (Series), TL Huchu
Long Macchiatos and Monsters, Alison Evans
Love from A to Z, (Series), S.K. Ali
Never Let Me Go, Kazuo Ishiguro
The No-Girlfriend Rule, Christen Randall
Noor, Nnedi Okorafor
One For All, Lillie Lainoff
On the Edge of Gone, Corinne Duyvis
Out of My Mind, Sharon M. Draper
Parable of the Sower, (Series), Octavia E. Butler
Parable of the Talents, (Series), Octavia E. Butler
Percy Jackson & the Olympians, (series), Rick Riordan
Pomegranate, Helen Elaine Lee
The Pursuit Of..., (Series), Courtney Milan
The Quiet and the Loud, Helena Fox
Roll with It, (Series), Jamie Sumner
Russian Doll, (Series), Cristelle Comby
Scar of the Bamboo Leaf, Sieni A.M
Six of Crows, (Series) Leigh Bardugo
Sizzle Reel, Carlyn Greenwald
The Spare Man, Mary Robinette Kowal
The Stagsblood Prince, (Series), Gideon E. Wood
Stars in Your Eyes, Kacen Callender [Expected release: Oct 2023]
The Storm Runner, (Series), J. C. Cervantes
The Theft of Sunlight, (Series), Intisar Khanani
Throwaway Girls, Andrea Contos
Top Ten, Katie Cotugno
Torch, Lyn Miller-Lachmann
Treasure, Rebekah Weatherspoon
Verona Comics, Jennifer Dugan
We Are the Ants, (Series), Shaun David Hutchinson
The Weight of Our Sky, Hanna Alkaf
The Whispering Dark, Kelly Andrew
Wicked Sweet, Chelsea M. Cameron
Wonder, (Series), R. J. Palacio
Wrong to Need You, (Series), Alisha Rai
Ziggy, Stardust and Me, James Brandon
Constellations, Kate Glasheen
The Golden Hour, Niki Smith
Beneath Ceaseless Skies #175: Grandmother-nai-Leylit's Cloth of Winds, (Article), R. B. Lemburg
Uncanny #24: Disabled People Destroy Science Fiction, (Anthology), edited by: Elsa Sjunneson-Henry, Dominik Parisien et al.
Uncanny #30: Disabled People Destroy Fantasy, (Anthology), edited by: Nicolette Barischoff, Lisa M. Bradley, Katharine Duckett
Perfect World, (Series), Rie Aruga
Academic Ableism: Disability and Higher Education, Jay Timothy Dolmage
A Disability History of the United States, Kim E, Nielsen
The Architecture of Disability: Buildings, Cities, and Landscapes beyond Access, David Gissen
Being Seen: One Deafblind Woman's Fight to End Ableism, Elsa Sjunneson
Black Disability Politics, Sami Schalk
Brilliant Imperfection: Grappling with Cure, Eli Clare
The Cambridge Companion to Literature and Disability, Barker, Clare and Stuart Murray, editors.
The Capacity Contract: Intellectual Disability and the Question of Citizenship, Stacy Clifford Simplican
Capitalism and Disability, Martha Russel
Care work: Dreaming Disability Justice, Leah Lakshmi Piepzna-Samarasinha
Catatonia, Shutdown and Breakdown in Autism: A Psycho-Ecological Approach, Dr Amitta Shah
The Collected Schizophrenias: Essays, Esme Weijun Wang
Crip Kinship, Shayda Kafai
Crip Up the Kitchen: Tools, Tips and Recipes for the Disabled Cook, Jules Sherred
Culture – Theory – Disability: Encounters between Disability Studies and Cultural Studies, Anne Waldschmidt, Hanjo Berressem, Moritz Ingwersen
Decarcerating Disability: Deinstitutionalization and Prison Abolition, Liat Ben-Moshe
Demystifying Disability: What to Know, What to Say, and How to Be an Ally, Emily Ladau
Dirty River: A Queer Femme of Color Dreaming Her Way Home, Leah Lakshmi Piepzna-Samarasinha
Disability Pride: Dispatches from a Post-ADA World, Ben Mattlin
Disability Visibility: First-Person Stories From the Twenty-First Century, Alice Wong
Disfigured: On Fairy Tales, Disability and Making Space, Amanda Leduc
Exile and Pride: Disability, Queerness and Liberation, Eli Clare
Feminist Queer Crip, Alison Kafer
The Future Is Disabled: Prophecies, Love Notes, and Mourning Songs, Leah Lakshmi Piepzna-Samarasinha
It's Just Nerves: Notes on a Disability, Kelly Davio
The Immortal Life of Henrietta Lacks, Rebecca Skloot
Language Deprivation & Deaf Mental Health, Neil S. Glickman, Wyatte C. Hall
The Minority body: A Theory of Disability, Elizabeth Barnes
My Body and Other Crumbling Empires: Lessons for Healing in a World That Is Sick, Lyndsey Medford
No Right to Be Idle: The Invention of Disability, 1840s-1930s, Sarah F. Rose
Nothing About Us Without Us: Disability Oppression and Empowerment, James I. Charlton
The Pedagogy of Pathologization Dis/abled Girls of Color in the School-prison Nexus, Subini Ancy Annamma
Physical Disability in British Romantic Literature, Essaka Joshua
QDA: A Queer Disability Anthology, Raymond Luczak, Editor.
The Right to Maim: Debility, Capacity, Disability, Jasbir K. Puar
Sitting Pretty, (memoir), Rebecca Taussig
Sounds Like Home: Growing Up Black & Deaf in the South, Mary Herring Wright
Surviving and Thriving with an Invisible Chronic Illness: How to Stay Sane and Live One Step Ahead of Your Symptoms, Ilana Jacqueline
The Things We Don't Say: An Anthology of Chronic Illness Truths, Julie Morgenlender
Unmasking Autism, Devon Price
The War on Disabled People: Capitalism, Welfare and the Making of a Human Catastrophe, Ellen Clifford
Year of the Tiger: An Activist's Life, (memoir) (essays) Alice Wong
Small Knight and the Anxiety Monster, Manka Kasha
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With an extra special thank you to @parafoxicalk @craftybookworms @lunod @galaxyaroace @shub-s @trans-axolotl @suspicious-whumping-egg @ya-world-challenge @fictionalgirlsworld @rubyjewelqueen @some-weird-queer-writer @jacensolodjo @cherry-sys @dralthon for your absolutely fantastic contributions!
Why did we ever standardise spelling..... what would it be like to just,,, slap any old letturs doun,, just feel the spelling in yor soul... wunt tu add an ekstra e sumwere? go fore it, yor not rong, nuthing is wronge,, imbrace inkonsistensies... Shaykespeer's nayme was spelled mor than 27 diffrint weys during his lifetyme, & this was a kommon and aksepted fenomenon,, Imajin all of us, gleeful childrin, and the letters of the alfabette, finger paynts at our dissposal,, we ar free to yooze them however we wish.... unfetterd
Hi. What the fuck.
And why did I, an artist, who went to art school, not know this?
Describing gender as a spectrum implies that there are people whose gender cannot correctly be displayed in digital media because it falls outside the RGB colour gamut.
Posting faggot and queer like 2am gunshots to keep property values on my blog low and scare away assimilationist LGBTs who want to replace my empty lot full of native wildflowers with a 5-over-1 because they're too traumatized by their upbringing to accept the reality of our diverse marginalized community
Patch note: references to "falling" and "falls" have been perceived as frightening. To better enable casual references and conversation these episodes have been renamed "unexpectedly sitting" and "unplanned lying down".
I do like the scorn the opening sentence has for the concept of being "perfectly normal." That's a strong opening for both a children's book and a book about magic.
(Tragically the series doesn't live up to the expectations this sets.)
It also implies The Dursley's go around calling themselves "perfectly normal". Which. It's just not something I can imagine one neighbor saying or another, or Mrs. Dursley mentioning during book club over tea, or the topic coming up in casual conversation. Ever.
The phrasing doesn't come off as non-literal. I get tripped up in the specificity of the action. To whom do they say they are, "perfectly normal, thank you very much."
Does anyone doubt this? We are not actually shown how Harry's magic effects to Dursley's reputation growing up.
It does have a whiff of "tho doth protest too much" since they can't simply be "proud to be perfectly normal". Instead they have to assert (but to whom???) that they are "perfectly normal". They know and are infuriated that they are not.
It's a good set up for the conflict between the Dursley's and Harry, and the idea of an opening that immediately characterizes these antagonists as loving normality and "fitting in" is one I do very much like. But it's not quite there yet.
It needs a few more passes to hit just right.
B-, maybe C+
Anyway,
If anyone does have a recommendation for an urban fantasy book where the protagonist is in someone magically different and surrounded by family which is hostile to their very existence because of that difference I've been itching to read one.
Of, and of course, the protagonist should be explicitly queer because *gestures at previous paragraph*, obviously.
Oh fuck off
@rebellum said
So, I am confused about 1 thing, maybe OP can explain it. I googled "female urinary system" because I was confused about why you said the uterus was part of it. And some diagrams pointed out the uterus, while others didn't. So what's up with that? How is the uterus considered part of the urinary system?
I have no idea if the uterus is ‘officially’ part of the urinary system. I came across enough sources that described it as such I didn’t think twice about that sentence.
But when I say ‘uteri are part of the urinary system’ the point is that urologist are familiar with the uterus and treat urinary conditions that involve the uterus.
For example, various aspects of “female” anatomy can develop fistulas with the bladder, including the urethra, vagina, and uterus. This problem is most often fixed by urologists.
By the way, fistulas can also develop between the colon and these anatomies, which are corrected by rectal surgeons.
Urologist treat women, trans and cis alike. And someone pointed out in a re-blog that women also have kidneys.
Trans women who have had surgery still need to visit the urologist, not the gynecologist, because the former is familiar with our surgeries and the latter is not. You need to stop lying and spreading misinformation which could get someone killed.
Wow, everything you said is completely wrong. So it's very funny that you think my 'misinformation' is going to 'get someone killed'. That hyperbole is fear mongering and also that's just a really aggressive way to speak to a complete stranger. Especially to accuse me of 'lying'.
So let me clear up your misunderstandings.
Firstly, urologist specialize in the urinary system, which include the bladder and kidneys and also the uterus. They aren't like the male version of gynecologists. For example, urologist treat organ prolapse, where the bladder, uterus, or colon "fall" into the vagina, or will treat fistulas, especially bladder fistulas. (Which is a hole connecting the bladder and vagina.)
Secondly, Vaginoplasties are preformed by reconstructive surgeons not urologist or gynecologist in the vast, vast majority of cases. Also, vaginoplasties are not a trans specific surgery. Severe vaginal injuries, such as those caused by childbirth or disease, are also treated with a vaginoplasty.
It's laughable any ol' off the shelf urologist is "familiar" with the surgery. Plenty of doctors still refuse to preform even the simplest trans-specific healthcare 'because it's not a usual part of their practice they are comfortable preforming' let alone complex reconstructive surgery.
But my original comment wasn't about vaginoplasties, it was about checking the cervix for cancer.
So, thirdly, trans women aren't the only women with neo-cervixies. In addition to the above, people who have undergone hysterectomies of one kind or another often have a neo-cervix as well. Or, for example, if someone has cervical cancer, and needs their cervix removed, they give that person another cervix.
Because the cervix is a very important part of that set of anatomy. It keeps the uterus and other organs from prolapsing (just falling out) and is also something of a barrier that keeps junk out of the uterus. And if you don't have a uterus, it keeps junk out of the abdominal cavity.
The procedure to check a cervix for cancer is the same regardless of if its a neo-cervix or a cervix-cervix.
Meaning, gynecologist are also familiar with the cervix aspect of a vaginoplasty. As well as the rest of the vaginoplasty. Because they treat people who've had vaginoplasties. So, you know, it's perfectly normal to go see a gynecologist to have your vagina looked at.
A basic pap smear is actually simple enough it can be done with an at home kit (though if anything needs to be biopsied they'll need you in the stirrups for that).
So uh, recommending you see a gynecologist for a vaginal specific issue isn't horribly dangerous misinformation, it isn't even misinformation. It's a perfectly normal thing to do.
If a surgeon made you a vagina, that surgeon should tell you what vagina problems to look out for, what health screening you need, and what specialists you should have preform those tests for you. They'll also likely be able to refer you to someone trans friendly if needed.
Getting an at home pap smear test from a general practitioner is not a big deal. There's no need to see a urologist for that. If you need your neo-cervix biopsied there's no reason not to go see a gynocologist since trans women aren't the only ones with neo cervix.
And also most urologist offices aren't going to have speculums and stirrups.
Trans health care is not some big secret only select medical disciplines are let in on.
A general practitioner can prescribe hormones and keep you up to date on the tests you need for that. A plastic surgeon with experience is going to preform the surgeries, MtF or FtM. A general practitioner can send you home with a pap smear kit, or preform one in the office, even. A gynecologist can look at your vagina, because it's not a special or trans exclusive vagina. A urologist can look at a urinary tract or bladder infection or what have you.
Acting like trans health care is some super secret complicated thing is transphobic. That's something transphobic doctors say as an excuse not to treat trans people.
A friend of mine had a complication develop after surgery and needed a local urologist to fix it. The long term fix was surgical, but the urologist could have drained the painful mass that developed while she traveled to see her surgeon. But he refused. So did the doctors at the Emergency Room.
So she got to enjoy a very painful very long very bumpy bus ride from her rural college to the city where her surgeon was so he could take care of it for her.
YOU'RE the one who needs to 'stop lying and spreading misinformation' because your misinformation perpetuates the excuse transphobic doctors use to avoid treating trans people at all.
It is not a trans need to have a painful surgical complication corrected and it is not complicated to drain an abscess. But that doctor refused her, not because the abscess was caused by an unfamiliar surgery, but because she required that surgery because she was trans.
You are telling trans people that our medical needs are complex and overwhelming and scary. That's discouraging. And it's just not true.
Urologist don't have exclusive rights to vaginoplasties. Urologist aren't extra familiar with trans women's health needs. The cervix isn't part of the Urologist's specialty.
Calm down. Going to see a gynecologist for a pap smear isn’t going to kill anyone. And the gynecology field as a whole is making an effort to be more welcoming to trans women because it’s perfectly normal for trans women to see a gynecologist.
Hello!
(And hello Vera as well, cool blog)
I was diagnosed with PNES nearly 3 years ago. A lot has changed since then. I was diagnosed with vassalage syncope and dysautonomia. After gaining a better understanding of these cardiac conditions and what it felt like to faint or be about to faint, I stopped having seizures as a reaction to those syncope sensations.
I still have non-epileptic seizures. I’ve come to a point where I can control the shaking enough to walk (with assistance and supervision), talk, and use other gross motor skills. It still hurts, it’s still frustrating, it’s still exhausting. I still have other psychogenic episodes.
Let me know if there’s anything I can do to help.
has anyone else ever had a pyschogenic non-epileptic seizure? or any type of stress-induced seizure? i haven’t come across anyone yet and i’m really curious if it’s happened to anyone else on here.
it’s been….a rough week. a really, really rough week.
Fae is such a beautiful puppy, thank you @doberbutts for sharing her joy with the rest of us.
Once my sister entered my house (where she did not live at the time) at 1:00 am, accidentally waking me up.
The next morning (a weekend) she woke me up at 7:00 am (too early) to ask me, politely but firmly, to make her breakfast.
I told her we had eggs, cereal, and yogurt.
She asked if I could please make her something.
I told her we had eggs, cereal, and yogurt.
She told me she wanted something hot, but not eggs.
I said, "That sucks."
She said please.
I said fine, I recently (two days previously) learned an amazing grilled cheese recipe.
(It had been practically the only thing I ate during those two days.)
I made her grilled cheese.
Brie, with the lightest amount of jam, fresh strawberries, and thin slices of apple.
She thanked me profusely, said I was the best sibling ever, and that it was the best goddamn grilled cheese ever.
It makes for a great story, because that's such an absolute bat shit thing to do.
So, yes, I, non-binary, would make my spouse a sandwich if woken up at 3:00 am and asked to do so. I would only do it the once, and I would be laughing at how absurd and profoundly self centered the request was at every possible moment.
My parents think my response to when a women asked me the following question question is why stopped being pursued in my Catholic community. It was a lighthearted discussion but maybe they are right lol. Although every single happily Godly married couple who I asked this question to (seperately from each other) has given the same response, my parents included.
So, the question:
No nuance button because nuances is already baked in. We are assuming both spouses are able to make a sandwich (nobody is in a full-body cast or had brain cancer or whatever).
AND NO NASTINESS