Crip Shelves discussion

Hi! Welcome to Crip Shelves! We hope you'll participate in discussions here and our monthly book club. Use this thread to introduce yourself to other members and be sure to check out the Meet the Moderators thread, too.

Hi, i'm Tyler. I'm 31 and was born with VACteRL Association (acronym hence the capitalization) aka i'm a medical nightmare. I live with chronic pain (from various medical issues).

I'm also bisexual and nonbinary (He/Him or They/Them pronouns). I love to read pretty widely. My favorites being horror, contemporary, fantasy, nonfiction...

I am an ambulatory wheelchair user. I have a colostomy. I also have PTSD, depression, and anxiety. I use identity first language.

Tyler J wrote: "Hi, i'm Tyler. I'm 31 and was born with VACteRL Association >

Hi Tyler, welcome to Crip Shelves! You actually managed to send me to Google- being involved in the disabled and spoonie communities, I'm already familiar with lots of medical conditions and it's not often I have to google one, but I hadn't heard of VACteRL Association before. Lol!

Thank you :). Most people haven't heard of Vacterl Association, including Dr's.

Tyler J wrote: "Thank you :). Most people haven't heard of Vacterl Association, including Dr's."

I can relate! Once I actually had a doctor google one of my rare conditions and read the wikipedia page on it while I was in the appointment!

Xen wrote: "Happy New Year! My name is Xen. I am 32 years old, married, and have been partially disabled since ..."

Hi, Xen! Welcome to the group! I'm so glad you found us and hope you find the friendship and support you're looking for here.

I definitely understand the loneliness and frustration that can go with being undiagnosed. I went without a proper diagnosis for years, too. I was diagnosed with anxiety, fibromyalgia, and IBS as a teenager, but that really didn't explain most of my symptoms. It wasn't until I was diagnosed with Ehlers-Danlos Syndrome and POTS/Dysautonomia in 2015 that anything really started to make sense. Since then I've collected several other diagnoses (gastroparesis, occipital neuralgia, etc.) as well.

Congratulations on getting a service dog!! That's so exciting! One of my specialists would really like me to have one, but it's not really possible for me right now. On top of the usual considerations like costs and training, I have two cats who would not be pleased with a canine addition to the household. Haha. If you don't mind me asking, what kinds of tasks will your SD be trained for? Are you training the dog yourself?

Hi I'm Emma I have mild Cerebral Palsy and anxiety. What book are we reading for January 2021?

Emma wrote: "Hi I'm Emma I have mild Cerebral Palsy and anxiety. What book are we reading for January 2021?"

Hi, Emma! Welcome to the group! We're currently reading The Oracle Code.

Hi everyone, I'm Sammy. I have endometriosis and chronic migraines. We're also investigating some other health issues at the moment relating to chronic fatigue and joint pain which we thought was lupus but tests came back negative. I have bipolar II and C-PTSD as well.

I love graphic novels and comics, as well as horror and sci-fi, especially creature feature.

Sammy wrote: "Hi everyone, I'm Sammy. I have..."

Hey, Sammy! Welcome to the group!

I hope you find answers for your other symptoms soon. Negative test results can be so frustrating.

Our current book club pick is a graphic novel, so I hope you join in for that. :)

ETA: I just remembered there's a creature feature with chronic illness rep coming out this year! Lycanthropy and Other Chronic Illnesses

Tiffany wrote: "Sammy wrote: "Hi everyone, I'm Sammy. I have..."

Hey, Sammy! Welcome to the group!

I hope you find answers for your other symptoms soon. Negative test results can be so frustrating.

Our current ..."

I'll definitely try to join in for the current book club pick. I love Barbara Gordon.

And I'm going to eagerly await Lycanthropy and Other Chronic Illnesses. It sounds right up my alley!

Hello all, I'm Danielle! I'm twenty-four years old, and my main diagnoses are Hypermobile Ehlers-Danlos Syndrome and Idiopathic Hypersomnia (AKA my body hurts and I want a nap).

I like to read all kinds of different genres, but high fantasy is my absolute favourite.

I've had a hard time finding books with good disability/illness representation, so I'm looking forward to reading and discussing with everyone!

@Sammy If you ever want to host our book club discussion one month with a horror or creature feature novel, just let me know what book and when and I'll set it up! No pressure if you don't, but I don't read horror at all and I'd like the book club to have a variety of genres. I prefer to find books with disability or chronic illness representation, but that's not an absolute rule. Anything that you think would make for a good discussion would be a great choice!

@Danielle Hey, Danielle! It's great to see you here on goodreads! I'm not going to pretend we don't know each other in real life, lol. Hopefully you like some of the books we share on here. :)

Hi, I'm so glad to have found this group! I have ehlers danlos syndrome, pots, raynauds, mcas, gastroparesis, and CRPD...who knows what else. So thankful to other readers who i can really relate to!

Mia Pia (mia.pia.reads IG) wrote: "Hi, I'm so glad to have found this group! I have ehlers danlos syndrome, pots, raynauds, mcas, gastroparesis, and CRPD...who knows what else. So thankful to other readers who i can really relate to!"

Hi, Mia Pia and welcome to the group! We have a couple of zebras in here, myself included, so you're in good company. I hope you enjoy our book club and other discussions. :)

Hi everybody! I'm Ian, and I use he/him or they/them pronouns. I am 20 years old. I am Autistic and have ADHD. I also have anxiety and sensory processing disorder. I use AAC part-time.

I like to read all sorts of things. I try to prioritize books by marginalized authors. I mostly read young adult and middle grade books, but I am trying to start reading more broadly.

Ian wrote: "Hi everybody! I'm Ian, and I use he/him or they/them pronouns. I am 20 years old. I am Autistic and have ADHD. I also have anxiety and sensory processing disorder. I use AAC part-time.

I like to r..."

Hi, Ian! Welcome to the group! What kind of AAC do you use, if you don't mind me asking? I'm trying to learn ASL, but it's hard to right now with the pandemic because I can't take classes anywhere. For now I've been learning from YouTube videos mostly. I've tried various AAC apps, but none have worked well for me.

I love middle grade too! I've tried to expand into adult fiction more over the past few years, but I still mostly read YA and MG.

Hi all,
I'm a reader and writer who uses identity-first language and She/Her pronouns. I'm hypermobile with chronic pain, and some spinal anomalies. I'm here because I want to read more books with good disability rep and they're hard to find. Also, I like connecting with other disabled folx.

I read almost everything for adults. I admit, many YA voices are hard for me. I write speculative literary fiction with disabled characters (obviously). And I'm super stressed right now because my debut novel comes out in September and I have no idea what I'm doing.

(In response to Tiffany. I couldn’t figure out how to reply with the app.) Hi! I mostly use Proloquo4Text. I also occasionally use Proloquo2Go. I want to learn ASL too, but nobody I know in real life knows it or has any interest in learning. Also, I’m happy you love middle grade too!

(Also in response to Tiffany) I have also been mostly learning through YouTube videos, especially those by Bill Vicars.

Jaye wrote: "Hi all,
I'm a reader and writer who uses identity-first language and She/Her pronouns. I'm hypermobile with chronic pain, and some spinal anomalies. I'm here because I want to read more books with ..."

Hello Jaye and welcome to the group! I'm so excited you joined and that we have a disabled author in the group! Good disability rep is definitely hard to come by. Do you have any favorite adult fiction books with disability rep?

Congratulations and good luck with your debut novel!! That's so cool!



(And do any of us really know what we're doing??)

Ian wrote: "(In response to Tiffany. I couldn’t figure out how to reply with the app.) Hi! I mostly use Proloquo4Text. I also occasionally use Proloquo2Go. I want to learn ASL too, but nobody I know in real li..."

Hey, Ian! The app is really limited in what you can do in groups. I don't think there is a reply function.

Thanks, and I'll check those out! I've only ever tried the free apps because I've never wanted to invest the money in an app I'm not sure I'll like. My mom is trying to learn ASL with me! I've watched Bill Vicars, too. I'd still like to take lessons somewhere once it's safe to, but YouTube videos are definitely helping for now!

Hey Everyone,
I'm Lisa. This last year has turned my world on its head. So far I have been diagnosed with POTS, EDS, and Celiac disease. My left leg would like to divorce me and so I can't walk properly.

Reading is one thing that I can do. So I started a Booktube channel. Hoping that someone else in this group can also relate.

Lisa of Troy wrote: "Hey Everyone,
I'm Lisa. This last year has turned my world on its head. So far I have been diagnosed with POTS, EDS, and Celiac disease. My left leg would like to divorce me and so I can't walk pro..."

Hi, Lisa! Sorry I haven't replied to welcome you to the group until now! I've been really overwhelmed with health/medical stuff the last few months and haven't had the spoons to keep up with other things. There's a few of us here who have EDS and/or POTS, so you're in good company.

I have a Booktube channel, too, although I haven't been able to make any new videos recently. I just subbed to your channel. Here's mine if you want to check it out: https://www.youtube.com/channel/UCuE0...

hi! i’m emma and, so far, i’ve been diagnosed with pots, hypermobile eds, post tibial tendonitis in both legs, an accessory navicular in both feet, and amplified musculoskeletal pain. i hope to see more books that include chronic illnesses and disabilities to be able to read about more characters like me :)

I thought I had posted this when I joined the other day, whoops!

Hi everyone :)

I'm Heather, I'm originally from London and now live in Glasgow, Scotland. I'm a pop culture and disability awareness blogger who blogs about all things geeky, living with chronic illnesses and my love for beauty products. I'm a massive bookworm and regularly review books, with fantasy, science fiction, horror and urban fantasy being my favourite genres. I'm on social media as justgeekingby.

I have seven chronic health conditions; hypermobile Ehlers Danlos Syndrome (hEDS), chronic migraines, ME/CFS, IBS. anxiety and depression, asthma and rhinitis. I also have PTSD, compulsive skin picking and undiagnosed dyscalculia. I talk about all of these openly on my blog, Just Geeking By - http://geeking-by.net

I'm really glad to find an active group on GoodReads that is focused on disabled books and disability representation. I look forward to getting to know you all better <3

Welcome to the group Emma and Heather!! Sorry I didn't reply sooner! It's great to see more newcomers! :-)

If you haven't yet, check out our book club schedule on the group's main page. Older discussions stay open indefinitely, so if you see a book we've already read in the group but you're interested in it and want to add to the discussion, you're welcome to at any time. Also, if you ever want to recommend a book for us to read and discuss or lead one of our book club discussions, just message me anytime and I can help arrange it.

Apologies again for the delayed response!

Hi everyone! I'm Taegan. I'm 17, live in Scotland and use she/her pronouns. I have an undiagnosed chronic illness, symptoms started when I was very young and I became much more unwell at 14. I'm an ambulatory wheelchair user.

I'm not able to do much but I volunteer with charities online from my bed, which is so rewarding! I also enjoy reading, but this can be really difficult.

I'm hoping this group will help me find some books with disability representation and meet people that understand the struggle of regular reading with a chronic illness/disability <3

Welcome to the group, Taegan! Thanks for joining. I hope you're able to get a diagnosis soon. I know the struggle of being undiagnosed as I was there for years, too.

It's awesome you've found ways to do volunteer work from bed.

This group tends to be very laidback since so many of us do struggle with reading regularly or on a schedule of any kind as well as keeping up with the discussions here. There's definitely no pressure to be active constantly, but hopefully you can join in some whenever you're able to!

Hello everyone!

My name is Alexandria, but I go by Lexi, Lexie, Alexie, or Alexia (any nickname is fine except Alex). I use identity-first language. I'm 18 and was diagnosed with RF-negative (rheumatoid factor) polyarticular (meaning 5+ joints) juvenile idiopathic arthritis when I was 9 months old. I have arthritis in every joint, including my wrists, elbows, knees, ankles, fingers, toes, hips, cervical spine, jaw, shoulders, and spine (I'm aware that it's a long list of joints; when it comes to joints, my body is a train wreck). I was certified disabled (license plates and placard) at 6 years old, though I don't use any mobility aids at the moment (long story; I was offered a wheelchair as a child but I refused it, instead using shopping carts, wagons, strollers, and my family [parents and older sister used to give me piggyback rides] since I didn't like the pity looks adults give disabled people, children in particular), though I do use braces and ACE bandages almost daily.

I'm female and my pronouns are she/her. I'm a reader, writer, artist, and blogger (I use my blog to talk about the Arts, reviews (TV, movies, and books), and how my disability/arthritis/autoimmune disease/chronic illness affects my daily life (and my artistic endeavors).

I try to incorporate disabled characters into all my books that are WIPs. In the YA fantasy I've been working on for the past year, the main girl lives with chronic pain. One of the main characters also ends up with a disability at the end of the first novel. Another character uses a cane to get around and another side character (who isn't in the book much at the moment tbh) has spine and/or vision issues. I'm also in the middle of writing a YA realistic romance about a girl with JIA.

I've only been diagnosed with JIA, though I suspect I may have other things wrong with me (anxiety, depression, Celiac disease or non-Celiac gluten sensitivity, IBD or IBS, etc.). My goal is to become an author-illustrator.

My blog is https://musingsofanarthriticartist.bl... if anyone is interested.

Link to all of my posts involving disability: https://musingsofanarthriticartist.bl...

Link to all of my posts involving books: https://musingsofanarthriticartist.bl...

Hi, Alexandria! Welcome to the group and thanks for joining. We don't have a whole lot going on right now, but if you ever want to host the book club one month, just let me know what month and your book choice.

That's great you include disabled characters in all your WIPs! If you ever get one of your books published, you'll have to let the group know!

I'll take a look at your blog.

Tiffany wrote: "Hi, Alexandria! Welcome to the group and thanks for joining. We don't have a whole lot going on right now, but if you ever want to host the book club one month, just let me know what month and your..."

Thanks for the warm welcome, Tiffany! Alright, sounds good. Thanks =) I do have at least one book idea.

Oh, for sure. I have a few chapters done on the fantasy novel if anyone is interested in reading it?