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Disabilties - Blog Posts
So far just for my LUQ pain I've had
2 urgent visits
1 online visit
2 ER visits
1 primary visit
2 urine tests
2 Blood Draws
1 IV
2 X-Rays
1 CT scan
2 wrong diagnoses
1 antibiotic that didn't help
And they still don't know what it is. This has been going on for almost a month and it's exhausting. I'm in pain
I really like the fact that Hordak’s and Entrapta’s friendship can be read as invisible disability and visible disability solidarity.
Entrapta and Hordak, She-Ra 3x02
*takes adhd meds* oh nice I actually experience hunger now, yay for having several warnings before entering the hunger danger zone
*hungry constantly* ok well you didn't need to do all that
I keep forgetting that the body and brain that I have are actually Severely Fucked and Debilitating, and that most other people don't have to deal with any of that
I always have to make sure I fit the standard of the people that have it on easy mode, no fucking wonder I'm so exhausted
My insulin pump doesn't make me unattractive. Neither do my scars, or all the tubes that hang off of me, or the needles and ports and machines that are attached to me at all times. Parts of my body don't work like they should. I have neuropathy in my hands and retinopathy in one eye. My kidneys need help to work. I've been on beta blockers since my 20s because my heart doesn't work right. That doesn't make me undesirable. I'm worth having sex with. I'm worth pursuing romantically and sexually. I am a whole person that deserves love and to feel good about myself.
feeling sexy and being disabled are things that can exist together. I can have medical devices and a feeding tube and still feel sexy, and i really dislike that people think that the two are completely separate and cannot exist together. I'm allowed to feel confident and love myself and the way i look even if i look a little different, and every other disabled person is too. I love myself and i have a feeding tube, not i love myself but i have a feeding tube.
Anyway, people with brain damage I love you. People who have had strokes I love you, especially if you're told you were "too young" to have one. People who acquired your brain damage by less common means such as infection, lack of oxygen at birth or degenerative disease, I love you. People with moderate and severe brain damage, I love you. People who lost their sight or hearing or ability to speak because of their brain damage, I love you. People who have paralysis from their brain damage, I love you. People with amnesia and severe cognitive issues from their brain damage, I love you.
You are not a punchline, you haven't lost your humanity, your thoughts and opinions are as valuable as anyone else's. We deserve respect.
You know, sometimes I struggle to call myself disabled. And it’s not because I think the word “disabled” is inherently negative or demeaning. (I’ve long since grown out of that mindset.)
Really, half the time I feel like, “well, I can still hold my own in hearing spaces! I don’t even use aids! I don’t have it that bad. I’m not disabled enough.”
But even so, if I’m not focusing hard on the person speaking to me, I probably wont be able to understand them.
If a room has background noise, or if someone is standing on my left side, hearing them will basically be impossible.
If people aren’t right in front of me they really have to project or else I won’t be able to understand a word they say.
It takes so much energy every day to make sure I’m hearing and understanding everything around me.
I am disabled.
Yet general society has pushed the narrative that disabled people cannot function ever. To truly count as disabled, you must always be cared for. You must always be in a wheelchair. You must always have aids. If your struggle isn’t immediately obvious, are you really disabled?
And that’s bullshit to me. Because all it leads to is being infantilized, looked down upon, and scrutinized endlessly. It’s especially bad for those who are neurodivergent or otherwise mentally disabled.
We shouldn’t have to live like that. We shouldn’t have to justify and prove our suffering to everyone we meet so we can get the accommodations we need. We shouldn’t have to be looked down upon for being disabled.
Does ANYBODY with pots have any tips on how to make some kind of progress with exercise, or at least not be completely out of spoons after? I miss running sm, and it's driving me crazy
Has anyone cracked the code to not being completely exhausted 24/7? I feel like I can only get my obligations done before it's right back to bed
The deafening ear ringing every time I stand up is going to drive me insane
How'd I dislocate my hip by sleeping 😭
Anybody else with ehlers danlos syndrome have sway back?
Idk how to fix it, but I was wondering if anyone else does this
I had a teacher just last week who was actively talking about how you shouldn't discriminate against other students, and he was specifically talking about disabled students. Midway through this talk, he looks back at me, (I'd been stimming pretty hard the whole time) and he says "what are you, playing air guitar?" And I was so shocked by how ironic it was, that I didn't even say anything.
Any other chronically I'll people have the experience as a kid where they just Didn't Feel Good? That kind where you couldn't describe your symptoms, or pinpoint anything specifically wrong with you, other than just feeling bad. That definitely should've been more of a red flag.
Yeah... text to speech has kinda saved my life in that area
My hands hurt a lot too. So like. Limited ability to be on my phone and type or to even play games. Thanks ehlers danlos and fucked up joints.
Random vent:
I legitimately do not know what is going to happen to me in the future. All I want is to be a firefighter, but two days into emt school and I'm already having a flare up. We went to visit the fire station today, and I nearly passed out just from standing still. I was always such an athletic child, and everyone expected that I would kick ass in this field, yet here I am, struggling to stand. I already knew that I would have a very short, painful career, but now I don't know if I can do it at all.
Being a disabled person going into the medical field so so weird. Other disabled people are saying "fuck medical practitioners" and I'm like "...sorry? Idk what I did, but srry ig"
This is literally so important, yes! I’ve watched Footless Jo’s videos on YouTube, and she does such a good job explaining how her life has changed after amputation and what accommodations she has to make to improve her quality of life—and I am here for it! The way she’s being treated by both YouTube and some commenters really sucks.
Even as someone with medical based trauma who has to do calming techniques whenever dealing with medical subjects, I don’t think it’s a good idea for me to cut that stuff out of my life! Throughout your time on this earth, you will experience some sort of medical issue or know someone experiencing a serious medical issue. It’s our responsibility to learn to self regulate, and approach these situations with a compassionate and level head. Both for ourselves and our care, and for the people around us.
People with disabilities, scars, amputations, and other visual differences will exist! People need to learn that someone’s existence is not a trigger warning.
I think that there’s not enough talk about triggers that shouldn’t be warned for. There’s a bit of talk about not warning for body differences as “body horror” (that should be reserved for fictional depictions), but not about other triggers, and I think this is actually hampering intersectionality.
The main one I’m going to get into is being triggered by masculinity. This is a you problem. You can avoid men somewhat, but men (and people you think are men) will exist around you. Yes, this includes in public bathrooms. You need to learn how to deal with that (in ways that do not involve the police), and if you are so afraid of peeing in proximity to someone you perceive as a man you need to use exclusively single stall bathrooms. Public places are not your safe space.
Hawaii is my number one bucket list things of all time! I know I’m a disabled veteran with a lot of limitations (due to different chronic illnesses and mental health illnesses I have unfortunately partly due to my injuries in the military), BUT I can still have dreams and aim for them! I still love Hiking, Lighthouses, anything nature (green and blue), history, language (teaching myself Hawaiian), culture, etc etc you name it I love and Hawaii has it. Probably one of the most extraordinary places to visit! And I WILL get there one day!
Oh and for my TBB/SW friends I will DEFINITELY be wearing my TBB and Grogu aka Baby Yoda shirts lol (I have a TON of them but especially for the lateral haha).
Anyway, people with brain damage I love you. People who have had strokes I love you, especially if you're told you were "too young" to have one. People who acquired your brain damage by less common means such as infection, lack of oxygen at birth or degenerative disease, I love you. People with moderate and severe brain damage, I love you. People who lost their sight or hearing or ability to speak because of their brain damage, I love you. People who have paralysis from their brain damage, I love you. People with amnesia and severe cognitive issues from their brain damage, I love you.
You are not a punchline, you haven't lost your humanity, your thoughts and opinions are as valuable as anyone else's. We deserve respect.
In case anyone finds it helpful because mobility aids are horrifically expensive and inaccessible…
And for those people who have access to mobility devices but might benefit from a second chair they can abuse without risking expensive damage…
Erik Kondo has made a website, Open Source Innovations, that details plans for DIY wheelchairs. These wheelchairs can be made from common materials like wood, plastic, and pvc. They are lightweight and can be custom fit to the user allowing from the same degree of movement you would get from a custom chair. And they are durable and easily repairable. (he has been stress testing his latest design by dropping it down stairs, dropping it out of a car, launching it across a driveway, and throwing it off a deck). Its 12lbs and I think he said its was in the $200 ish range for parts.
He also is working on cheap, open source, accessible designs for beach chairs, off road chairs, motorized attachments (think smart drive), and so on. Plus he skateboards in his wheelchair. Cool dude, helpful info, pass it on.
Overload...
One of the best things about college to me is just showing up early to get a good seat away from people and pick where I sit. I love being able to sit away from the flickering bright white lights that loom over the students, yet being able to sit away from windows and distractions that might interfere with my studies. With all these great things soon comes misery though...the seat I pick always ends up having someone trying to sit near me so I have to set my backpack on the chair next to me and sit in the corner if possible. I fear people might think I'm rude, but the noises of others clicking away on computers, talking to their neighbors, smells, and any small noises or motions they make just tend to bother my sensory issues. I have severe sensory issues due to my autism and sensory processing disorder so I go into a meltdown almost every time I show up to class. I love school and learning as it's my special interest and always has been. The ability for me to expand my knowledge in any way possible makes me happy and want to flap my hands around. I just wish people were more considerate and I didn't have to wear headphones just to exist in normal environments. School is great, yet extremely hard and I always miss classes sometimes. I tried online school, but it's hard for me to focus and stay attentive in class. I'd rather sleep through it instead which is a huge issue. I don't know, I just feel as if I need to let out some of my issues and get them off my chest in order to sit through this next class. Sorry if I come off as rude, I don't mean to. I just am struggling so much lately to just exist. I want to curl up in a ball and hide away from society until people acknowledge that those with disabilities can and will be in professional settings too so we need to make things to accommodate them.
my prosthetic keeps breaking I hate my life
‼️please help me get a wheelchair‼️
hello, my name is leo, or more commonly known as ‘lav’ on here.
i’ve been dealing with debilitating chronic pain for over 10 years and i really need a wheelchair. i haven’t gotten much help from my healthcare system, being fat and afab has really fucked me over while trying to seek medical attention..
i am still fighting to completely figure out what’s wrong with me, but for now i know that i have several bulging discs in my lower back, as well as scoliosis. (as well as medically recognised POTS).
my pain is getting worse and worse, and i barely leave my home since walking and being upright in general hurts so much. a wheelchair would improve my life immensely, both physically and mentally.
i am currently on disability benefits, which pretty much is the lowest income group in sweden, and saving up for a wheelchair myself would take a very long time.. i will of course also be saving up as much as i can and putting into an account meant for wheelchair funds.
so i’m asking you to donate if you want to and if you are financially able to, and if not, please reblog this.
i have found a good chair that is also accessible to a fat person, and i need 7111 SEK (around 650$) to cover the cost of the chair & the shipping. i have started a gofundme that i’ll be sharing in this post, and i welcome all help, donating just a little helps, and reblogging and sharing the gofundme in general helps immensely too.
thank you so much for reading💜
This is kinda weird but I’m trying to figure out how weird my ankles actually are. I have over-pronated ankles but high arches, which apparently is strange because flat feet cause over-probated ankles and high arches cause under-pronated.
Over-pronated ankles look like ) (
Under-pronated ankles look like ( )
And normal ankles are straight | |
Please reblog if you care to so I can get a larger sample! It would be much appreciated!
people dont understand the boredom of being disabled.
i see a lot of people suggest to people to embrace boredom and creativity will come from it. that to improve your attention span and get your life back from the trap that is quick form media you need to be bored more.
but i dont think that is the case for many disabled people.
its not the case for me.
i am SO bored. EVERY day. i cannot do all the things i want to engage in. i cannot play games i cannot read i cannot do art i cannot bake. these things arent being stopped by a social media addiction, they are being stopped by my health.
and my attention span isnt struggling for the same reasons as many abled people. mine struggles because of my symptoms. my fatigue, my pain, they are distracting and fog my brain.
so disabled people, when youre looking for tips about how to improve your attention span, and engage in your hobbies more, keep in mind that the reason for your struggles may be completely different to the people who are sharing suggestions and tips on the topic.
disabled people!!!
what are some illnesses/disabilities that youve never seen representation for and would love to see?
let me know in replies reblogs asks messages whatever suits you :3
being unattractive or physically different/disabled DOES NOT equal being morally bad/evil. there is an atrocious amount of ableism that occurs when someone doesn’t look “normal.” and i am so fucking sick of it.
in media it is (almost) always the villains who are different/disabled. and media is a massive part of how people form their world views.
i want to mention arcane for example, because people seem to be confused about what good representation is. people praise the hell out of that show, and for good reason it has great things about it, but people told me it had good disabled representation. so i watched it. and while parts of the disabled representation is good.. almost all physically different/disabled characters are portrayed as bad/evil/villains at some point in their story (or all of it.) and then by the end of the show most of them are dead.
abled people i need you to understand that is not good representation. please look out for these tropes it happens ALL the time.
good representation includes different/disabled characters who are heroes and morally “good” too.
if you make all your villains physically different and none of them are heroes i hate you. i am so sick of this.
disabled consistency prt. 2 prt. 1 here (u dont need to read it to understand this post)
what happens to consistency, to habits, when you have a dynamic disability?
i want us to understand the differences between having a consistent body and having an ever changing one. sometimes you could be so healthy you are working/studying, exercising a few times a week, socialising, and independently caring for yourself. but other times.. you’re bedbound? can’t even shower and brush your teeth twice a day? can’t keep up with texting your friends or social media? what habit is surviving that.
you work so hard to build habits and follow routines you and your doctors have set, and then you achieve it, but then it all gets taken away in a flare-up. you wonder what the point is. its a constant vicious cycle. even abled people know its hard to build habits. it takes time. and you might not have that time.
for abled people, theres no time limit on building a habit. they might have a goal in mind of when they want to achieve it, but theres no actual clock ticking in the background.
for me, and for other dynamically disabled people, we are on a time crunch. you may not be aware of it, but you are. it’s always a race to get things done while you can, build those habits and routines and get consistent and get your life together while you can. because even if you’re not thinking it, you are living on a countdown until your next flare-up. until the next crash, the next time you lose all your progress.
and that cycle, is exhausting. it’s like building a sandcastle right on the shore. you build it and you get to revel in it for a second. then it’s gone. there may be a little bump in the sand where your hard work had just stood, but essentially, you are starting from scratch. while the abled people are up the beach a few metres and their sand is perfectly wet and perfectly dry and the waves never reach it.
then those same people, tell you to just keep building. “eventually you’ll get there!” “keep trying!” “habits take time!” they say. but how? there will always be another wave.
understanding this difference in experience is so important if you want to understand why you can’t just tell a disabled person to form habits or be consistent and expect results.