Using a mobility aid when you need one is an act of self love <3

Me when my disability disables me

New oc based on the emojis: 🩵🎧🫧🌟🌈 Thabo!!! His special interest is meteorology

this is your daily reminder to stop being abusive and mean toward people with bladder and bowel issues.

im tired of hearing people mock those who struggle with bladder/bowl control, for people who can't tell when they need to go until it's too late or at all, for people who have uncontrollable voidings and leaking, for people who need to wear incontinence products around the clock, for people who need them influctuating amounts and need different kinds of products, for those who bedwet, for those who can't afford incontinence products so their clothes get dirty- to everyone with bowel and bladder issues.

we are human. we are still people. we are not gross, we are disabled. we are struggling with a disability. if you make cutesy posts about canes and wheelchairs, you need to include people who wear diapers, people who need plastic pants, plastic bedsheets and absorbent bed pads. you need to include people who can't tell when they need to go. people who need/use catheters. people who have colostomy bags. people with stained and dirty clothing. people who have to change their incontinence products in public.

you need to include autistic and ADHD and ND and disabled people who feel unsafe without diapers. you need to include people with spinal injuries and ehlers danlos syndrome and muscular control disorders with need incontinence products and feel safe with them. you need to include people who like their diapers and not just tragic stories where it's never discussed or doesn't negatively impact their life and livelihood.

please include all disabilities in your disability positivity posts, and please be kind and treat all disabled people with respect and humility, including those of us with symptoms you may find "gross".

Today’s disability topic is how America forces disabled people into poverty.

Today’s particular topic is how SSI keeps disabled people poor.

Let’s first go over what SSI is. Supplemental Security Income is a program that provides monthly payments to disabled people and elderly people who meet the financial qualifications.

SSDI stands for Social Security Disability and eligibility is based on work credits. This is for people who used to work before becoming disabled. We will not be discussing this today.

Here are the facts:

The average SSI payment in January of 2023 is $553 per month.

Disabled people on SSI also cannot have more than $2000 in savings and assets. This is severely limiting.

This is not enough to even cover basic needs. How can someone live based off those payments? Disabled people who live with someone such as a caregiver, family member, or partner receive reduced payments and risk losing their benefits.

Disabled people cannot marry without losing their SSI or losing financial assets.

Here is an eye opening article about forced poverty:

https://brownpoliticalreview.org/2022/01/government-mandated-poverty/

Also check this article by The Hill called “Lifeline for people with disabilities forces them to live in poverty”

https://thehill.com/opinion/congress-blog/3702528-lifeline-for-people-with-disabilities-forces-them-to-live-in-poverty/

Reblog if the word psychosomatic or synonyms of it trigger instant, burning rage.

psy·cho·so·mat·ic adjective (of a physical illness or other condition) caused or aggravated by a mental factor such as internal conflict or stress.

[Basically, the fancy word for "it's all in your head"]

I hate being in this disability grey space. I'm well enough to work most of the time but that means I can't do anything else in my life. Disabled enough not to be able to keep up with others my age.

I'm constantly in pain and exhausted but well enough to have to push through to keep a job so I can afford to live and afford pain medicine and braces. I just subluxed my hip and am stuck in my wheelchair but I know I can't use my wheelchair at work cause I need my hands free. So, here I sit with a heating pad on my hip, sobbing and begging for the pain meds to help.

Just wish I were either fully abled or disabled enough to get help. Instead I'm stuck here. In the disabled grey space

The traumatised urge to have someone say "I'm proud of you for taking care of yourself" because everyone always pushed you too hard.

Hot take but the "hypermobile EDS isn't rare so you can't call yourself a zebra!!" Argument falls apart when you consider just how underdiagnosed hEDS is and how when you go to the doctor with the symptoms of it, they generally suspect horses first lol

the “I have a tummy ache but I’m being brave” meme hits different when you’re chronically ill

Nothing happened, I'm just disabled.

And if something did happen, it's not your business.

You are not owed an explanation for my disability.

My cane is not an open door for interrogation.

Let me exist.

Rating names/terms for Ehlers Danlos Syndrome:

Ehlers-Danlos Syndrome: 10/10 Lawful neutral, it’s the official terminology, lets you know what’s up

EDS (in all caps): 9/10 Sometimes confused with other unrelated conditions and acronyms but usually works

EDs (‘S’ is lowercase): 2/10 Usually refers to erectile dysfunction or eating disorders, which causes a lot of confusion.

Ehlers Danlos: 8/10. Good shorthand while still knowing what’s going on.

Earers Daniel’s Syndrome: 1/10. I have only heard this once, from an ER doctor. He said it to me as he turned away from his screen (which was pulled up to the Web MD page for EDS) and proceeded to mansplain my condition to me inaccurately. At least he tried.

“Eyers Dan—“ *waves hand around*: -5/10 I’ve heard this one a lot from medical professionals. I just know I’m about to be malpracticed and am already planning the quickest way out of the situation.

Zebras: 6/10 I like the imagery, I like mascots, I like the story (when doctors are in med school they’re told “if you hear hoofbeats, think horses, not zebras” but them zebras are missed) however, I have two criticisms: a) more rare conditions are out there, and zebras technically refers to any rare diseases, not just EDS b) I feel sad when I think about how it basically calls EDS the “I was medically malpracticed disease”

EDSers: 8/10 a cute lil shorthand for “people with EDS”. Easier to explain than the zebras thing

hEDS/vEDS/cEDS/including subtypes: 7/10 I like the idea of being able to know what your subtype is and find people in your sub community, HOWEVER my only concern is that it can feel (and used for) invalidating people without a genetically confirmed subtype because of inaccessibility. I haven’t had gene testing because I can’t afford it— but I have clinically diagnosed EDS, which has been confirmed at multiple hospitals by multiple specialists. I score a 9/9 on the Brighton, meet all major criteria, and meet almost every other minor criteria for EDS on top of that. But I don’t know my subtype yet. I don’t hate/dislike people who use this term and I don’t discourage it, but I do encourage mindfulness about genetic testing accessibility and privilege of access.

Bendy disease: 10/10 a silly goofy joke I say with friends “I cannot walk up stairs on account of my loosey goosey bendy disease” which is always funny to me. Even with my serious things like “my life threatening cardiac conditions are rapidly progressing” you add “on account of my bendy disease” and bam theres my coping skill.

Ehlers: 3/10 a step in the right direction, but it sounds like “yellers” and dismisses half of the team that described the condition

“Double jointed”: 1/10 I was told my whole life until I was 18 that I was just “double jointed” for starters, it’s medically inaccurate. You’re hyper extending, subluxing, or even dislocating joints whenever you’re “double jointed” in a joint. There is not two joints there (unless you’ve had x rays and for some reason genuinely do have two joints in that spot). I honestly hate this term and it’s incredibly dismissive of the pain that happens with EDS while also making it seem like a super power that we’re encouraged to do

Contortionist: 1/10 [NOTE!!! some contortionists DO NOT have EDS and can just bend like that. Some have benign joint hypermobility. But many contortionists do have EDS.] In the context of people with EDS, I hate this term. It’s often the first thing people jump to when I explain my condition. They see my crippled ass in my wheelchair/powerchair or limping around with my cane/crutches/rollator, usually in multiple braces/supports (and thats just external noticeable-to-everyone things, let alone if you hear any aspects of my daily life) and their first thought is: “wow!! So you can entertain me like it’s a freak show!” And not “holy shit dozens of dislocations per day and countless subluxations per day must be excruciating”. I did contortions when I was younger to get praise and due to peer pressure. Fuck that noise I will not be your ugly law era freak show creepy cripple p0rn. Fuck everything to do with that actually.

If anyone is interested in a reference for Thabo! 🌈🎧🫧🌟🩵

He uses a lot of different braces : wrist brace, ankle brace, neck brace, KT tape for shoulders, Forearm crutches, Rollator, etc, all to help him with his EDS.

maybe i like the way that my ehlers danlos syndrome makes my skin abnormally soft. maybe i like the way it makes my skin fold and hang in ways that i don't see on most other people. maybe i like that my body is unique and one of a kind. maybe i like that i have been told by previous partners that i'm a luxury to hold and that i feel great to touch and am great to look at.

my disabilities suck ass, yeah, no shit. i hurt myself and sublux my joints often. but i'm also allowed to like the parts of it that aren't all bad. i have an extremely unique skin texture, and i think that's pretty fuckin cool. maybe i'm allowed to like that part of it. maybe cripples are allowed to try to feel at home in our own bodies, as they are, without needing to feel like they'd only be happy if they were 'cured'.