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Stranger Things
Andulka
Peter Solarz
he wasn't even looking at me and he found me
Not today Justin
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Kaledo Art
JBB: An Artblog!
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trying on a metaphor
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Origami Around
Cosmic Funnies
pixel skylines
祝日 / Permanent Vacation
JVL
izzy's playlists!
Love Begins
Keni
seen from United States
seen from United States
seen from United States
seen from Malaysia
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seen from Türkiye
seen from Russia
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seen from Netherlands
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@financially-crippled
Please do not chastise me like a child for having hair all over my clothes. I litterally cannot keep in on my head and I already lint-rolled myself head to toe already. Just stop commenting on it, I'm not oblivious. And for the love of all things gay, stop asking if I've had my thyroid checked before.
The thing people don't get about chronic fatigue is the frustration when you want to get up and do mundane things like laundry, dishes, homework, etc but you're so tired you can not, for the life of you, stay awake.
Last appointment with Dr
Me: I definitely agree I have fibromyalgia but that doesn't explain my bloodwork or the severity of my symptoms or the other symptoms not explained by that diagnosis, I think I have a second underlying condition.
Doctor: well whatever it is, unfortunately I can't help you. You need a different doctor.
Appointment today after I was under the impression I wouldn't have another appointment
Doctor: I think you have fibromyalgia but that doesn't explain your bloodwork or your other symptoms not explained by that diagnosis. I think you have another underlying condition.
Me: [long silence because my only responses are sarcasm and sarcastic]
Don't help a wheelchair user without asking.
Now of course if they dropped something that's one thing, but if helping requires touching their chair, ASK FIRST!
I got to experience why for the first time last week. I had managed to get myself wedged in a corner washing my hands so a lady in the bathroom simply grabbed my chair and tried to get me unstuck. This might seem innocent, and I know she meant no harm, but what she didn't realize is that the level of stuck I got myself was "how the hell did you manage that" level. Part of my push rim (the metal park of the wheel we use to push ourselves) was caught on something so when she moved me, it got really fucked up and I actually needed to go to an auto shop to have them power sand it smooth so I wouldn't cut myself on the jagged metal. I also just got the chair 5 days prior, and the cost of replacement is over $100 as warrenty won't cover what is technically user error.
Now this isn't to say you can't or shouldn't help a wheelchair user, but just remember our equipment is expensive, it's an extention of our body, and you could injure us or yourself. Ask us first, it could save everyone time, money and sanity!
Are you even disabled if someone hasn’t accused you of being entitled for expecting people to comply with federal civil rights laws.
The more time I spend in the world as a disabled person the more I realize that when places claim to be “accessible” they usually just mean “ if you tried you could probably squeeze a wheelchair in here.” But can’t stand for more than 15 minutes at a time? Need consistant and reliable access to a bathroom? Sorry, no can do.
Bar: “0 stairs and wide doors!”
Bar: *has 1 step and the doors don’t have an open button so you have to ask some drunk chick having a smoke open the doors for you while a drunk dude wheels you in*
Stop assuming that mobility aid users are lesser.
the only thing disability "simulations" accomplish is making abled people think we're helpless and something to pity. spending a few hours or a few days in a wheelchair/only using one arm/blindfolded/etc is not representative of disabled people living our entire lives with our disabilities
just let us tell you what makes life more accessible
Things that have happened at my college in the past two days that prove life is not designed for disabled people
Context: due to undiagnosed issues, it is painful for me to walk more than say, 5 steps at a time, so I have a wheelchair to get around campus, these issues did not begin occuring until about three weeks into the semester
1) fire alarm went off at 1:30am, I was told by an Ra to use the elevator and he escorted me down. That is Not what you should do in a fire situation
2) while doing work in the library on the second floor, the elevator broke, and I had to scoot down the stairs on my ass and my friends had to carry my wheelchair down the stairs after we waited 15 minutes for security and they still didn't show up
3) I got charged for the dorm "upgrade" when they had to move me because its the only dorm on campus that has any accessable rooms
When I just got upstairs and realize I forgot something important downstairs...
I feel personally attacked /hj /lh
Thank you for the ra flag! Is there anyway i could request a version of it with like a wheelchair or cane silhouette?
Here they are! (。・∀・)ノ
Hhhhh I have a flag now!
Being in a diagnostic/treatment process is so difficult. Everyone expects you to act like everything is the same, like everything is normal. But it’s not normal. Instead you’re going through painful, invasive testing and treatment. You’re hurting, inside and out, mentally and physically. You’re tired. You’re exhausted.
And yet when people irl ask you how you’re doing, all they want to hear is that you’re fine.
But you’re not. And it will be a long time until you are.
For this reason can we stop asking "how are you today?" out of courtesy? I'm tired of lying our of politeness when my hip is one wrong step away from partially dislocating.
Nothing shows people's privilege more than reading hotel reviews.
You're complaining that the breakfast buffet didn't have eggs.
I'm trying to see if I can get my wheelchair into the fucking lobby.
We are not the same.
It's not that hard to make doorways wider!
I imagined the first place I would take my wheelchair out would be a park, or a store with wide open aisles. You know, somewhere easy to navigate and mostly free of stress, just to get the hang of maneuvering myself around while seated.
Unfortunately reality is a factor and my first outing ended up being to a hospital where I got stuck in just about every doorway... obviously
Just one more way the world isn't designed for us.
Anonymous #1
Your disability's cost before medication or treatment:
-> wheelchair (a very basic manual one since it's all we can afford right now) -> $500 (USD) and insurance is an ass so we haven't gotten to work on having them cover aids because we're so focused on making them cover medication -> service dog - about $400-$1000 (USD) since we're doing partial at home training, but it would be nearly $15000 for full professional training -> all braces (hands, knees, etc) - about $200 (USD) bandages/gauze - about $100-$200 (USD) a month, depending on the severity of our illness at the time
Your disability's cost for treatment and medication:
$100 - $200 per session and we see -Rheumatology (covered) -Psychiatry (not covered) -Immunology (covered) -Therapy (not covered) -Allergy (covered) -Gastroenterology (sometimes covered, if we fight them for it) -Dermatology (again, sometimes) On top of that, recently we've needed to get tests done and see surgeons -MRIs are about $1000 per (covered) -Hospital visits are about $2000 total (not fully covered) -Colonoscopies are about $3000 per (covered, thankfully) Our medication:
-Weekly injection is $500 for a month's worth (not covered) -Extremely vital medication (Rinvoq) - $5000 PER MONTH (not covered and we unfortunately can't afford it; we've been in the hospital recently due to not having this and are in the process of finding a medication insurance might cover) -Over the counter meds are about $300 per month -Other prescription meds are about $1000 per month in total (we take tons of meds) (fortunately covered)
Any other expenses!:
We spend at least 4 hours a day tending to medical issues, and at least 6 resting. We're currently unable to work or go to school due to health complications and depend on friends and family to support us. Also, we had to pay $40 a day, a FUCKING DAY, for parking at the hospital :/
How many things have air staff broken or lost?:
None, we don't fly often
Roughly how much did this cost you?:
N/A
Did the airline ever compensate you, if so how/how much compensation?:
N/A
Is there anything you'd like to say to the able-bodied world? if so use this space to let it all out.:
Being disabled is EXPENSIVE and it should NOT be!
