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#ehlers danlos syndrome
hellyeahsickaf · 3 months
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I found an extremely dope disability survival guide for those who are homebound, bedbound, in need of disability accommodations, or would otherwise like resources for how to manage your life as a disabled person. (Link is safe)
It has some great articles and resources and while written by people with ME/CFS, it keeps all disabilities in mind. A lot of it is specific to the USA but even if you're from somewhere else, there are many guides that can still help you. Some really good ones are:
How to live a great disabled life- A guide full of resources to make your life easier and probably the best place to start (including links to some of the below resources). Everything from applying for good quality affordable housing to getting free transportation, affordable medication, how to get enough food stamps, how to get a free phone that doesn't suck, how to find housemates and caregivers, how to be homebound, support groups and Facebook pages (including for specific illnesses), how to help with social change from home, and so many more.
Turning a "no" into a "yes"- A guide on what to say when denied for disability aid/accommodations of many types, particularly over the phone. "Never take no for an answer over the phone. If you have not been turned down in writing, you have not been turned down. Period."
How to be poor in America- A very expansive and helpful guide including things from a directory to find your nearest food bank to resources for getting free home modifications, how to get cheap or free eye and dental care, extremely cheap internet, and financial assistance with vet bills
How to be homebound- This is pretty helpful even if you're not homebound. It includes guides on how to save spoons, getting free and low cost transportation, disability resources in your area, home meals, how to have fun/keep busy while in bed, and a severe bedbound activity master list which includes a link to an audio version of the list on Soundcloud
Master List of Disability Accommodation Letters For Housing- Guides on how to request accommodations and housing as well as your rights, laws, and prewritten sample letters to help you get whatever you need. Includes information on how to request additional bedrooms, stop evictions, request meetings via phone, mail, and email if you can't in person, what you can do if a request is denied, and many other helpful guides
Special Laws to Help Domestic Violence Survivors (Vouchers & Low Income Housing)- Protections, laws, and housing rights for survivors of DV (any gender), and how to get support and protection under the VAWA laws to help you and/or loved ones receive housing and assistance
Dealing With Debt & Disability- Information to assist with debt including student loans, medical debt, how to deal with debt collectors as well as an article with a step by step guide that helped the author cut her overwhelming medical bills by 80%!
There are so many more articles, guides, and tools here that have helped a lot of people. And there are a lot of rights, resources, and protections that people don't know they have and guides that can help you manage your life as a disabled person regardless of income, energy levels, and other factors.
Please boost!
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body-of-ouches · 1 year
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One thing that MASSIVELY pisses me off is how fainting is shown in media. It’s always the person sways a little, collapses in one movement, and then is unconscious for like… fucking ages??? They wake up hours later tucked under a blanket and it’s acted like that’s normal. It’s NOT. A person that’s fainted should be back with you pretty quickly, actually:
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(From NHS website)
I had an experience in my last work place where I fainted, but because it looks so different to how it’s shown in film and TV my managers had no idea what had happened. Here’s a comparison of usual media vs my actual fainting that they were all confused by-
Films, TV shows, plays etc:
1) Person goes “oh goodness” or something similar whilst holding hand to chest
2) eyes roll back, gracefully falls to the floor
3) nearby people see the poor fainted person, pick them up, put them on a bed or sofa
4) person comes to hours or even days later with no idea what happened and everyone else is just like “oh good you’ve woken up 🙂”
My usual fainting experience:
1) Everything starts spinning. Incapable of making words as my sole focus is on trying to get myself to the ground ASAP
2) Stumble to floor/chair/ anything I can lean against
3) Quick violent slump as actual faint occurs. There is no dainty falling- the whole body has hit shut down. Usually smack my head on the floor if I haven’t managed to get myself somewhere soft
4) Aware of surroundings almost immediately, but takes a few seconds to fully come back round
5) Carefully sit back up and explain to everyone going “what the fuck happened” that I fainted, and no, I do not need smelling salts actually.
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talkethtothehandeth · 6 months
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This is a reminder that you can still serve cunt while using a mobility aid, hope that helps
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lessonstobelearned · 3 months
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There needs to be more allowance for disabled people to be angry. People want us to be somber and quiet. Sad at our condition and how hard life is. And yeah that’s allowed. But we’re also allowed to be fucking pissed off. People don’t help, people infantilise, governments don’t supply enough support, places aren’t accessible. This isn’t momentary. This is forever. There are so many things we can’t do and so many things we can’t be. Life isn’t fair. It likely won’t get fair enough for most to be comfortable. Yeah, I’m grieving, I’m sad, but I’m also FUCKING ANGRY.
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a-sassy-bench · 4 months
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do able-bodied bodied people not understand that if disabled people call out of work every time they don't feel good that we would call out of work every fucking day?
like honestly. what do you think being disabled means?
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cane-you-dig-it · 9 months
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happy disability pride month to those with conditions no one talks about, online or in general:
multiple sclerosis (me lol)
marfans
cerebral palsy
bells palsy
hidradenitis suppurativa
cauda equina syndrome
mixed connective tissue disorder
hyperadrenergic pots
non hypermobile eds types
stickler syndrome
mitochondrial disease
cystic fibrosis
sickle cell disease
myasthenia gravis
post-cholecystectomy syndrome
SWAN (syndromes without a name)
...just to name a few. i see you and you deserve awareness and understanding.
this list is non exhaustive, rb with other conditions you want to see represented!!
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[ID: a post banner with dark red background and medium grey bolded text in the center. it reads “This post is about physical disabilities, do not derail.” On each side there is the dynamic disability icon, a gray symbol of person in manual wheelchair leaning forward with arms bent behind them mid-push. /end ID]
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clownrecess · 9 months
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Happy disabled pride month to disabled people with undiagnosed physical disabilities
Happy disabled pride month to disabled people with undiagnosed mental disabilities
Happy disabled pride month to mobility aid users
Happy disabled pride month to disabled people who are in constant pain
Happy disabled pride month to AAC users
Happy disabled pride month to disabled people with ableist family
Happy disabled pride month to fat disabled people
Happy disabled pride month to disabled people with scars
Happy disabled pride month to disabled addicts
Happy disabled pride month to disabled people who's disability is progressing
Happy disabled pride month to disabled people who love their disability
Happy disabled pride month to disabled people who hate their disability
Happy disabled pride month to disabled people with underrepresented and/or uncommonly known disabilities
Happy disabled pride month to all disabled people. I love you. /p
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chadepitanga · 6 months
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there's something so raw and soul crushing about spending your late childhood+teen years suicidal then growing up and actually wanting to live, after an ungodly effort, only to see your health deteriorate because of chronic illness.
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1980s-slasher-film · 1 year
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Accommodations are not special, they’re not a leg up, they’re not a benefit. They’re not putting anyone ahead in the race, nor are they taking anything away from others.
They exist to put us on a level playing ground to everyone else, and nothing more.
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azztiph · 8 months
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Sometimes u just need to sob and scream and cry and bitch about ur disability
I think a lot of people feel like they need to be at completely at peace with their disability
And you don’t!
Be mad be sad be pissed off!
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irongladiatorpeach · 1 month
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You know, being a disabled kid of disabled parents is actually kinda beautiful sometimes. I have a childhood memory of sitting on my mother's rollator being pushed cause my legs were too sore to walk, both of us using the same mobility aid to get around. She used to take me to school on the back of her mobility scooter, and when my chronic pain got worse as a teenager, she gave me all of her wisdom on how to deal with it.
Its always portrayed it as this tragic thing, but really it's just life. I'm so grateful to have had parents who understood what I was going through cause they'd been through it too.
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mangedog · 1 year
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shout out to people with spatial awareness issues. wishing you a "didn't bump into any table corners or walls" day today!
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rainbowchihuahuabunny · 5 months
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Every day I am brutally reminded in one way or another that this society isn't built with disabled people in mind
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b0kunoanime · 9 months
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On this beautiful disability pride month can we talk about how eating healthy is incredibly difficult when you’re disabled? If I can’t get out of bed to make food then I might not eat, or I might end up spending far more money than I want on takeout, and hurting my finances. And those meal delivery kits are cost prohibitive and rely on you having enough spoons to, y’know, actually make the food.
People don’t talk a lot about disabled people’s struggles with basic survival skills, but this one is huge and important and something we have to do 3 times a day for optimal health — and when your health is already suboptimal, it can be incredibly dehumanizing to hear people just say things like,
“Well, have you tried going vegan?”
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salt-baby · 9 months
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therapy isn't enough I need to fistfight a medical practitioner
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800-dick-pics · 3 months
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Help Me to the Finish Line!
I am a Chronically ill Black Lesbian who is close to having my service dog prospect in my arms! I have been struggling with my disabilities for a very long time and finally after years of waiting I will be able to owner train my own service dog! I still need help to get some things in order for my prospect who is coming very very soon. So I am lowering the goal to 1,800! I have a supportive community who is willing to help me with training, socialization and much much more, and we are all really excited for this new chapter in my life.
For the first time in a very long time I have hope for my future and quality of life. If youre able please circulate and help me reach my goal! Having support for this service dog prospect is life changing, Thank you all!
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CA: $sleepyhen
VN: wildwotko
DM for P@ypal
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