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HNPP and Me

@bundleoftomacula / bundleoftomacula.tumblr.com

Freja - 25. I have Hereditary Neuropathy with liability to Pressure Palsies (HNPP), use Intermittent Self Catheterisation (ISC) and Long Covid which has caused PoTS + other issues. Please feel free to ask any questions you want.
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i'm not an amputee so absolutely tell me to stay in my lane if applicable, but it seems to me that there's something really unique about the way that black sails handles silver's disability and the narrative role of his prosthetic. as in, it's one of the only shows i've seen (although i'm sure there are more out there) where 1) a character's mobility is more impaired when using a prosthetic, and 2) where using a prosthetic is explicitly portrayed as an effort to appear more able-bodied to others in a way that's harmful to the amputee character: silver insists on wearing the leg in front of the men to the point of giving himself an infection and limiting his mobility in a fight because he's worried about maintaining his authority. while he doesn't choose to stop wearing it, i think it's telling that he also doesn't try to have a replacement made after he loses it or otherwise seem bothered by being seen using his crutch after he establishes the myth of long john silver by crushing dufresne's skull with his metal leg for mocking him as "half a man," symbolically tying the myth to his disability

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Ok so at this point I've had two people roll up to me in manual wheelchairs, well, one of them was somebody pushing somebody who was nonverbal at the time, but it still counts. They asked me why I had zip ties around my tires.

It's winter where I'm living and we have really bad snow. And the snow plow people are really bad at their jobs probably because there aren't snow plow people who clean sidewalks. As a solution I got to thinking about how I could increase the traction on my wheels. And the most redneck thing I could think of was taking a bunch of zip ties and tying them around my wheels. They last surprisingly long, and work surprisingly well. It's basically the same premise as chains for your tires during the winter.

I chose to space them out pretty evenly so there's about one for every spoke. You could probably do more or less depending on how many you want and how much traction you get but I wouldn't go more than three per spoke. I realize that it's a bit later in the winter, and I probably should have made a post about this sooner, but I came up with it about a week ago. So please share this, even if you're not disabled, because there are tons of people I know who are stuck in their houses because they can't get around in the snow. A pack of zip ties costs about $5, which compared to $200 knobby snow tires is a big save, and if you want to invest you could get colored zip ties.

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fickes

also it helps me walk or whatever

[ID: a digitally drawn two-panel comic. / Image 1: Text reads: “How I expected using a cane would feel:” Panel depicts a miserable person in tattered clothes, hunched over a cane and shaking as she walks. / Image 2: Text reads: “How it actually feels:” Panel depicts the same person, now standing tall and wearing flowing wizard robes and a long white beard. Her cane is at her side, glowing with magic, and she looks confident and powerful. /End ID]

Ooooh, can you do one for wheelchairs except it’s a throne? Because I definitely feel like I’m cruising around on a throne.

How I think a wheelchair will make me feel:

How my wheelchair actually makes me feel:

That’s it! That’s it exactly!

I haven’t gotten a wheelchair yet (blargh hoops) but I’ve rented and used scooters at places and

how you think it’d feel:

how it actually feels:

If I may add,

How I thought forearm crutches would make me feel:

How forearm crutches actually make me feel:

[ID2: A woman sitting in a wheelchair at an airport looking at something in her lap vs a video game character with purple hair leaning back casually while flying around in a throne-like one-person open craft.

ID3: An old man on a mobility scooter vs a person in racing gear and a helmet whizzing by on a four wheeler.

ID4: A person with forearm crutches staring off into the sunset vs an anime character standing on rock outcrop wielding two swords.]

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The narrative of ‘this person was disabled but their disability was cured as part of their story’ is ableist

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kipplekipple

The narrative of ‘this person is disabled but “overcame” disability in order for them to be a hero’ (e.g. a paralysed person finding a way to walk) is ableist

And just for clarification for the non-disabled, using adaptive technologies, like prostheses or whatever, is not ableist as long as you never forget. Ask yourself questions about the benefits but also the limitations of whatever adaptive thing you’re giving the character.

  • They have to take a pill every day to treat a chronic illness or chronic pain? Okay, what happens when they forget, or are in a bad situation and run out of pills?
  • They lost a limb or are paralyzed and now they have a sci-fi cybernetic prosthesis/exoskeleton to replace the lost functionality? Cool. What does maintenance look like? Does it ever malfunction? What happens if they don’t or can’t take care of it? Do they still get phantom pains even with the adaptation?
  • They’re deaf or blind or anosmic, but they’re a wizard who uses magic to adapt to the lost sense? Fine. What does it take to maintain that magic? Do they have adaptive strategies for when the magic fails?
  • They’re autistic or have ADHD or schizophrenia or some other cognitive disorder, and they have a chip in their head to make it easier to communicate when non-verbal? Okay. What exactly does it do for them? Does it ever malfunction or give them headaches? What are other ways they’ve adapted to their disability apart from this chip?

Other questions to ask that go for all kinds of things:

  • Do they have a service animal? For what tasks or situations is it trained?
  • Do their family/friends know how to help if their adaptive technologies/strategies fail?
  • Is their disability (or the adaptation) visible or observable to others? How do others react?
  • Has their society adapted to accommodate disabilities, and if so, in what ways? (Ramps, closed captions, sign language, etc.)

Basically, think about what it adds to the story to have your character disabled. If you were just going to completely cure it with no ongoing repercussions or adaptations, why did you bother making them disabled in the first place? What story were you telling?

really good addition

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Honestly struggling so much to do online uni. I have already had an extension and got a report due Monday but I just can’t make myself focus on it. I can stare at the document for hours and do nothing, read something and forget what I’ve written. Probably not helpful that its a report for what was supposed to be a research trip to Poland that never happened.

I am also the main carer for my Grandmother now and coming off medication. I normally study in the library but I’m at home and haven’t had a face to face uni thing since February as we had strikes then covid. Actual uni seems like a distant memory.

Anyone got any secrets/tips etc of how to study and write at home in a house of 5? 

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castledock

Honestly as a blind person I’m so tired of seeing fictional blind characters who don’t use white canes or other guides. “They have special powers so they know what’s around them” or “they’re confident enough to not need a guide” are common tropes, and I’m tired.

Are people scared that using a white cane will make their blind character seem weak? They can’t use a cane because they’re so special that they already know what’s around them, and other blind people who use guides are inferior because they’re not special?

I’m tired. Give your blind characters white canes and other guides. Let them hold onto their friends, let them have guide dogs. Don’t make white cane users feel ostracized for not being “strong enough” to go without.

Another thing that pisses me off is when a sighted character comes up with the fantasy equivalent of braille and teaches it to the blind character. Braille was invented by Louis Braille, a blind man, in 1824. The blind character should be the one coming up with it.

Tldr I’m blind and tired of sighted people lol

🔪 Sighted People MUST Reblog This 🔪

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So I stumbled through the Barbie aisle at Walmart the other day…

…and y'all, I almost cried. Just look at these. LOOK AT THEM.

So many skin tones!

PLUS SIZED BODY TYPES!

NATURAL HAIR STYLES!!! MULTIPLE SHADES OF DARK SKIN!!!

A WOMAN AS A DOCTOR!!!!!

I’M NOT DONE, THERE IS A PHOTO LIMIT!

LOOK AT THIS PROFESSIONAL LADY!

SO MANY SKIN TONES AND BODY TYPES AND LOOK AT THAT MERMAN!!!

FRECKLES!!!

Y'all, I’m just…so so happy.

I’m 35 years old and I’ve never seen a Barbie that looked like me, and then there I am as a Barbie in a purple sweater with thick thighs and evenly proportioned boobs and pink hair and a cat.

I can only imagine how other girls must feel.

Nicely done, Mattel. Nicely done!

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immaplatypus

Mattel also just announced some new Barbie dolls who have wheelchairs or prosthetic limbs!!!

Like screw anything calling this “politically correct,” this is what the real world literally is.  And the world’s population of children is just as diverse as its adults.  Kids deserve to see themselves represented.  As a disabled person myself, I can’t tell you how much this would have meant to me as a little girl.

BRO HAVE Y’ALL SEEN THE NEWLY RELEASED ONES

IM SOBBING

YES YES YES THIS IS PERFECT!!!

I only ever saw the one disabled Barbie but their is at least two! And look a ramp!

the OP was made a year ago so for fun I went to check what they’re new dolls were

Guys… Even being confident there would be even MORE added to the barbie range of dolls…. I was not prepared.

I am about to image spam you so forgive but there’s just SO MUCH

holy shit. I’m like… not even a doll person and so many of these I want!

There’s LITERALLY too many to add

(who is she?)

Plus sized Barbie with DIMPLES

They actually have a barbie with albinism and bothered to give her a proper face-sculpt!

This one looks like she could kill me instantly if she made direct eye-contact

This one’s smile is just KILLING me

Nubian girl because we’re not messing around

Also… this doll does not have any name on the product listing nor on the packaging so this might just be me but…. help me out here guys… is this.. ….is this a non-binary barbie? Am I presuming too much or is that what I’m looking at here??

Also final note. Just to REALLY drill this all home, Barbie has some photos of kids playing with the dolls and

Ironically, Barbie did not come to play around.

Also I’m obsessed with this Sally Ride doll

Barbie never played around, barbie played for keeps, why do you think she works so hard in so many fields?

if any of y’all think this is overkill:

i babysat the sweetest little girl who was in a hot pink wheelchair. it was almost brand new, and she was just so excited to finally have a good wheelchair!! the day i walked into the house after she’d gotten it, she wheeled over to me with the biggest smile and said “it doesn’t hurt my back anymore!!”

for her birthday, i got her a barbie doll who looked a lot like her (it was the one with vitiligo) and a little barbie wheelchair and a few other accessories because who doesn’t like accessories?

apparently she’d had a white doll for a while and of course loved her doll but when she saw not only the one with vitiligo but also the wheelchair? and she put that little doll into the wheelchair and pushed her around a bit on the table? she looked up at me and burst into tears, grinning from ear to ear, and murmured to me “she’s like me. i didn’t know there were ones like me” and lemme tell you i nearly broke down right then and there and i gave her the warmest smile and hug i could muster up and her parents called me a few months later (i’d stopped babysitting because they didn’t have money to pay and wouldn’t allow me to babysit for little/free like i offered because i knew they both were searching for jobs and couldn’t be around their kid much bc interviews) and they just thanked me, their daughter was “so happy to have a doll like her that she carried the barbie around with her all the time”. they hadn’t been able to afford the doll and were actually saving up for a wheelchair at least.

this isn’t overkill.

this is giving kids a doll like themself. this is showing them that they aren’t weird or irregular or not normal. this is showing kids that others who are different from them, others who do have a prosthetic or a wheelchair or dark skin or vitiligo, that those kids aren’t weird. if a little girl sees a barbie in a wheelchair, she’ll just think “oh that’s my friend!!” and be exposed to the fact that these “different” kids are kids too, friends and acquaintances and not people to be mocked or bullied.

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[ID: Shoshannah Stern, a woman with pale skin and long brown hair, giving an interview to Buzzfeed News in front of a generic talk show background. she’s wearing large gold and red earrings and a blue and white striped dress. she signs, “I think the world is ready to realize that being deaf, being gay, being transgender, being in a chair, being whatever, that adds value to life.” end ID.]

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I miss being able to read. Being well read. Having books as a hobby. Using it for studying. Being able to have it be a topic of conversation with others. I just really miss it.

(A dozen people have liked this in the hour and I’m so sorry y’all are going through this. Please don’t resist to reach and talk to me if you want)

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make posts about disability accessible

[ID: collection of tweets from Amanda Hackwith @ajhackwith reading
“If you’re fuzzy on why changes to the ADA is such a big deal, I get it. I’m keenly aware of what being abled blinds you to. I’m here to introduce you to the thing that dominates my husband and I’s life: Logistics. Hey. Abled friends. This thread is for you. #HR620
Disclaimer: I am not physically disabled. My husband is. He has used a wheelchair since birth. I’m using ‘we’ in here because that’s how we’ve experienced it, and this is shared with his permission. OK? Ok.
The reality of living with a disability is Logistics. We don’t just do something. You figure out if we CAN do something. And then try to chase down the secret hidden puzzle of how WE do it. Because, I guarantee you, we are the exception.  We are always the Exception.
So: join us. We leave home. We don’t call for an accessible taxi because that will take an hour. We can’t take a zipcar because there’s no hand controls. Walking through the door is Logistics.
We take a bus, praying that no one else with a wheelchair, walker, baby carriage, grocery bag, or big-ass backpack has already taken up the two accessible spots on the entire bus. Two. If so, we’re out of luck.
Or we take a hip, tech-will-set-us-free rideshare. There is no accessible option in the app. We pray that the ride that comes won’t drive off when they see a chair. That the folding chair will fit.
Maybe we walk home. We fought city hall for neighborhood curb cuts last year! Only fancy condo construction has torn them out again. For months. So we walk in the gutter of a busy industrial street.
We see a show. We can’t buy tickets online. We have to call to see if one of the five accessible seats in the theatre is available. There’s only one ‘companion’ seat. We aren’t expected to have friends.
We book a hotel. We have to investigate how crappy the accessible room is. (It’s usually a less desirable retrofitted room.) How a ‘normal’ room is laid out. If we can ‘get away’ with being treated as normal. For once.
We fly. We introduce ourselves to the attendants. We PROMISE we won’t be a bother. That we won’t need assistance. That we won’t need to rely on the rickety chair they want to strap him to, Hannibal-style. We make the attendants nervous.
We fly. We successfully board, but the bathroom is twenty feet to the back of the plane. We don’t have our chair. We hope we don’t need to pee for the next nine hours.
We want to do a fun tour of a new city/country/landmark. We spend hours calling tour companies, emphasizing how low fuss we are, how independent we are, how we’re one of the ‘cool’ disableds, if only they have room to fold his chair with the luggage. We promise to be good.
We want to eat at a special restaurant. It’s in a historical building. We crawl on our knees and throw the chair up the stairs to eat there anyway. There are stairs and there are stares. We are everyone’s free entertainment.
We eat at a restaurant. It’s accessible, sure! Just call ahead and Jimbob will throw a board across the steps for you to roll up. Or there’s an accessible entrance! It’s the loading ramp, out back. Through the pee-soaked alley and trash cans. Can’t miss it.
We eat it a restaurant. It’s totally accessible! Except for the bathroom upstairs. You can hold it until we get home, right honey?
Work has a social event. It’s held at one of the above ‘trendy’ restaurants. But HR totally apologizes, okay? Be cool. We can be cool.
We want to go home. We become invisible to taxis. He hangs back until I flag one down and glare the driver into submission.
W apartment hunt. All the cute ground floor dog-friendly units are lofts with stairs. All the accessible units have been rented out to able-bodied people because ‘no one wants them’.
We apartment hunt. The ‘large’ bedroom doesn’t leave enough room to either side of the bed for a wheelchair to sit. The glitzy new apartments have bathroom doors too small to get through.
We apartment hunt. The building is totally accessible! Except for that one tiny step. In the common room. To all the amenities you’re paying for.
And this is important: We are white, educated, financially secure, fairly young and healthy aside from the wheelchair. In other words: BEST CASE SCENARIO. We literally are operating and interacting with the ADA on every privilege we can manage.
If you’re surprised by what I’ve said, keep in mind the majority of the disabled community has it so much worse. With so much less resources. Even WITH the existing ADA. #HR620
No imagine how much worse, more hostile, the world will be if every target of discrimination had to ask each business, in writing, one at a time, to please not break the law. And they have 90 days to ignore them. And another 180 after that. Every restaurant. Every store. #HR620
Imagine you had to beg every business to allow you to exist. Imagine people complaining about ‘nuisance lawsuits’ and ‘support peacocks’ to you. Your existence is a nuisance. Your existence is over legislated. Your existence is unnecessary. Now call your damn senators. #HR620 “
/end ID]
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demenior

Every time I see a ‘modern au’ ft a character that has some sort of limb replacement like a metal arm or w/e and the ‘cool au version’ of it is a sleeve tattoo I literally want to reach through the screen and slap some sense into whoever posted it

They got a prosthetic in canon they gonna get a prosthetic in the au!!!! Because, I know this is a little far-fetched, but people who need prosthetics actually exist!!! In real life?! What a coincidence?!

Also you want cool prosthetics??? They totally exist

Want your character to have a cool prosthetic in the modern day?

Image

steampunk? check

#aesthetic? Floral?

avant garde?

cyberpunk?

there are no excuses for erasing canonical disabilities

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calvin-arium

It’s here !! The guide for two-legged people who don’t know how to draw wheelchairs !!! 7 pages of infodump ! Disclaimer : I don’t know everything, I have one (1) experience of wheelchair user who used both bad and good chairs, and I share what I learned.

Image description :

1) Calvin in his wheelchair saying “yo” under a huge title “how to draw manual wheelchairs properly by Calvin Arium, a wheelchair user comic artist”.

2) A character says “my character self propels in a chair that was outdated in 1970 lol” Calvin says “so it looks like you two legged people don’t know the difference between an hospital chair and a chair made to be independant” an arrow point the crapppy chair, saying “we never want to see this again”

a bubble says “the hospital chair is extremely unpractical, tough considering it’s cheaper than a good custom chair a lot of us have only this”

3) a character hurt himself trying to reach the wheels of the hospital chair. Several arrows point why the chair is unpractical : “high backrest restrain shoulders movement” “huge armrest restrains wheel access” “separated footrest : amovible, cheap, bulky” “x structure, foldable but heavy” “huge front casters for stability” “heavy wheels”

4) Several arrows point an active wheelchair (the KSL by Küshall) : “usually no armrest” “a low backrest allow more movement” “light, design, ferning expersive” “special cushion to avoind injuries” “knee angle is usually 90°” “one single piece of frame, sometimes entirely welded” “weight : from 4 to 10kg” “often rigid” “center of the wheel is the center of gravity” “higher quality wheels : less spikes”

5) A hand grab different parts of the wheel, pushing harder in the second half. Bubbles says “some have gloves, some don’t. The hand must grab the biggest area possible. Less movement = more energy. This is a common but not only way to push.Calvin is on his back wheels, rolling on grass and dirt bubble says “popping a wheelie is when a wheelchair user rolls on their back wheels to roll on every complicated surface.

6) several drawings illustrate the folding frame, the ergonomic but rigid and expensive backrest, the separated footrest (only for folding frame), the handles, the folding handles, athe amovibles handles, or no handles, the cool fancy loopwheels, the pretty custom colors 

7) More Features ! The fancy rigid-foldable frame, the anti tippers (sometimes used by beginners), the motorization (wheels, smart drive) when propelling yourself is difficult Calvin says “and now vroom vroom motherfuckers”

Do keep in mind though that a lot of wheelchair users end up with the rigid back uncomfy ones if they are poor. When I was in a manual chair that is the only kind I ever got and I went through three of them over the years.

Most of the wheelchair users who commission me are also stuck with that kind. What can you do? Capitalism sucks ass *shrugs*

Thank you thank you thank you for this. Not only is it great for artists but it also explains the difference for everyday conversation when people tell me “what kind of wheelchair is that? I’ve never seen one like that”

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This whole obsession with wheelchair users struggling on foot down the aisle at their wedding or across the stage for graduation is 100% powered by ableism.

“The heartwarming story of how one woman worked for 8 months straight so she could escape the horror that is being in wheelchair for a few short minutes to struggle slowly and painfully down the aisle on her special day.”

“the horror that is being in a wheelchair” bitch it’s hella better than struggling slowly & painfully down the aisle ffs

“Despite being permanently paralyzed, her one goal since her accident has been to walk across the stage for graduation. The whole crowd gave her a standing ovation and broke into tears when she dragged her paralyzed legs across the stage with the help of leg braces and a walker to collect her diploma, after which she immediately sat back down in her wheelchair, which she will use to move around for the rest of her life.”

How the hell is this an inspirational story? This person needs better goals. And a therapist.

They’re toxic in an even greater way because as a disabled person, I didn’t realise till I was reading this how much I had internalised that. I genuinely have had feelings of fear and shame about using a chair or a walker if I get married. And why? Because I’m constantly seeing “heartwarming” stories about disabled people who shed their mobility aids for that moment. Why the hell am I afraid of using them to get married? Anyone who marries me or attends the wedding will know I need them and love me regardless.

Bless this post for making me realise I’d internalised that shit.

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goldpilot22

idea: incorporating mobility aids into wedding fashion. decorating your wheelchair with flowers and lace as intricate as the dress itself. maybe one of those longass cape things idk what they’re called? on the back, idk if those would work with wheels wrt not getting tangled, but then again idk how they work with legs either. braces and canes thatre color-coordinated with your suit or dress. wedding outfits that include and are DESIGNED FOR wheelchairs/canes/braces.

I’ve seen wedding photos from several brides who decorated their power chairs with flowers for their wedding and it was BEAUTIFUL.

This post made me realise how much I desperately want to be able to not use my stick at my wedding next year and how fucked up that is

Some examples of how I decorated my wheelchair for my wedding (I’ve kept flowers on it ever since.) I highly recommend keeping yourself comfortable and happy on special occasions, however much that means including your mobility aids!

I love it!

concept: wheelchair as cinderella carriage with the fancy spiral/vine wheels

also BRING BACK FANCY FASHION CANES AND WALKING STICKS like seriously why did that stop being a Thing

You can definitely get fancy canes. FashionableCanes.com is one good source.

Flaunt your mobility aid!

Fashion designers and style gurus who do not incorporate wheelchairs and people who use them into their designs are cowards.

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lokiloo-blog

So today this family came into the restaurant and I while I was serving them, their son saw my Iron Man and Captain America charms and said ‘Avengers! I love the Avengers!’ I smiled and asked who his favorite was, and he said “Iron Man!’ with such a conviction that I wanted to melt. And then I noticed his hearing aids, and got excited. “Hey, you know Hawkeye’s just like you, right? He has the same hearing aids!” And I swear to god the whole family just stopped. As I explained that in the comics, there’s a Hawkeye that’s Deaf, you could see the little boy’s eyes just grow. His dad was so excited, he said he was go find all the issues for the kids. And as I served them, I overheard their mom explaining that when one sense goes, the others get stronger, and that maybe their brother would be a super hero one day. If there was ever a reason to include diversity, it is for the look on a child’s face knowing they’re not alone.

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