AnasAbdin
if i look back, i am lost
todays bird
Origami Around
Acquired Stardust
❣ Chile in a Photography ❣
dirt enthusiast
Discoholic 🪩
art blog(derogatory)
shark vs the universe
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tumblr dot com
I'd rather be in outer space 🛸
d e v o n
Show & Tell
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DEAR READER
pixel skylines
he wasn't even looking at me and he found me
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@my-disability
it's crucial that you untie "special interest" from "expertise". "it's true just trust me bro" doesn't have any extra weight when you add "I know because it's my special interest". you are not immune from falling for misinformation, and you are not immune from sharing misinformation. not to mention the fact that "amount of knowledge" isn't even a requirement for something being classified as a special interest lol!
THIS!!
THIS IS AN AMAZING WAY TO THINK OF CHRONIC PAIN
I wanted to point out that Nurse Hadley, the woman in this video, is a hospice nurse. This is what people say to and about patients who don't have long left to live. The fear of addiction and dependence on pain medication is so strong that people deny their literally dying family members proper pain management. You're never going to please the "but what about addiction" people, ignore them and take the meds you need to function.
I understand why functioning labels for autism are ableist. It's based on the idea that autism is something experienced externally- how much can this person function in society? It's a capitalist notion, and may not effectively convey how an autistic person is impacted by their disability. However, replacing that language with high/low support needs, doesn't fix that communication issue. I personally require very little support, but that's because I avoid all situations that I struggle with. I get overwhelmed easily and particularly struggle with socialising and sensory issues. I don't feel any particular label could be used to describe me. And for a disability that effects my ability to communicate, I wish there was language that could support me.
The first time I saw a post about using support needs levels instead of functioning levels I remember thinking "that's the same fucking thing". I tried to make it work in my brain but it is just the same thing worded to sound more accepting. Those of us in the middle or who have fluctuating needs still get left out of conversations and hsn still get spoken over because the change of language hasn't really solved the problem of communicating our struggles it just sounds less mean
I hate how often some (typically abled) people will go “well, if you can’t [get a specific support], then what?” when it comes to disabilities. As if it’s a “gotcha” moment. And then act like you’re exaggerating when you answer that question honestly.
Disabled people often die from a lack of support. A lot of disability aids are not a luxury, but a basic need in order to live.
“Well what happens if—” people die. People hurt themselves. People hurt others. Disabled people don’t magically become abled if our needs aren’t met.
If a bedbound quadriplegic is caught in a housefire, and there’s nobody there to save them, they’ll probably die. They won’t magically become able-bodied out of sheer will.
If a nonspeaking/nonverbal autistic is denied access to alternative methods of communication, they’ll suffer in silence. They won’t spontaneously become capable of speech.
Disabled people are disabled all the time. Our disabilities don’t go away just because they’re inconvenient, or if we’re in danger.
This is amazing, and I'm embarrassed to admit something I never considered.
The public restroom is almost inarguably THE WORST possible place to ever have to 'feel your way'!
[Video shows a woman with a white cane pointing to a braille sign outside of a bathroom that includes a map. We zoom in on the sign while she taps parts of it and says,
I'm at a Guide Dog center here in Australia. This is a legend, a tactile and Braille map of the bathroom, right outside the door.
We zoom back out while she continues, with large hand gestures,
Do you want to know what the hardest part of my day is, as a blind person? 'Cause it's probably not what you expect. It's not the fact that I can't drive, though it's not ideal. It is the fact that public bathrooms are all designed differently. Do you know how stressful it is, when I have to pee in public on my own? My boyfriend leaves me at the door of the women's room, and I have to walk into the great unknown. Is there going to be a line? Where in line am I supposed to stand? When I find the toilet - well, first off, when I'm with my guide dog I need the accessible stall, so I have to feel my way to the big stall. Then, when I get there, hopefully it's open. If not, I stand. I wait. I get in. I have to find where is the toilet paper? Where is the toilet? I have to hope to God it's clean 'cause I can't see it. Then I have to find the flusher - is it a pull, is it automatic - who knows? Then I have to find my way to the sinks. Where is the soap? Where is the dryer?
She turns back to tap excitedly on the sign.
Hello! We have found the solution.
She starts telling us what the sign says as her fingers skim over it.
So, up here it says 'female and ambulatory toilet map', and then it tells me 'A-T' means it's the 'ambulatory', which means it's the larger accessible stall. 'T' means 'toilet'. Um, down here we have, like, 'D' means 'dryer'.
She moves down to the map, showing us the location of the three stalls along the back wall.
So then I go here, and I know that this stall would be the one that my guide dog and I would use - 'cause it's the 'A-T', the bigger stall. Next to it, the two ones to the right are both normal sized toilets.
She goes back to the top left corner of the map to follow the left wall towards the front of the room. Halfway, she gets to,
Down here we have 'D', so this means it's the dryer for drying my hands.
She continues down, and at the front of the room takes turns tapping two squares for 'B', and one between them for 'S'.
We have 'S' and 'B', which means I now know: if I'm at the sinks, the soap is in between the two basins.
We zoom back out, but then she remembers something, so we go back to look at the opening at the bottom right of the map.
I want this! ... Ooh! And I know, look, here I walk in the door, so I immediately orient myself: toilets are right in front, I would go far left. Right next to the door is gonna be my sinks.
We zoom back out so she can finish,
Like, this, this is a game changer! This is a game changer. I want these everywhere. This is my plea. My next campaign. How to make toileting more accessible to everyone.
End ID.]
Thank you for the video description!
A reminder to myself and others about chronic conditions:
Constant pain is not only debilitating but exhausting.
Broken sleep, interrupted by pain or anxiety is not restful, you don’t need to be ashamed that you are still tired.
Pain even at levels you fee you can tolerate, is draining, it’s okay to feel that.
Brain fog is a bitch. You are not dumb for putting the jelly in the bowl cupboard, or not being able to focus.
Your symptoms, are not gross and do not make me unattractive, or unworthy of respect.
When stairs feel like climbing Everest, or dishes feel like three hours of hard labor, you are allowed to rest even if by some people’s standards I ‘have barely done anything’.
I am allowed to say no, or admit when I can’t do something. I don’t owe anyone an excuse or explanation for protecting my well being.
Irritability is a normal response to pain discomfort and anxiety, it does not make you a bad person.
The people who judge you for your limits and restrictions are not in your body or head. They are not the ones who have lived through your bad days and manage to survive.
Your fatigue does not make you lazy. Fatigue is a valid and real symptom
You are not obligated to push yourself in ways that cause you harm just because it would look normal, or avoid seeming rude.
You do not have to explain your mobility aids or lack thereof to anyone. If you are using them occasionally or all the time, you are valid and are doing what you need to do.
Your needs whether emotional, nutritional, mental, sleep or medication-related or otherwise do not make you an inconvenience, and you should never be made to feel that way.
You deserve autonomy. Regardless of your restrictions, needs, or state of your body. Your conditions, mobility aids, or even state of mind do not dissolve your rights. You are human. Your body is your own.
You don’t need to look sick to be valid or struggling.
You are doing your best in your situation and that is enough.
You are lovable, you are strong, you are more than your limitations.
I’m proud of you. Sorry if this post seems random, but it was a list of reminders I could use after the past few days and hoped they could help someone else. I wish everyone who reads this or needs it: strength, rest, peace of mind, understanding and hope. You are not alone.
this post is for the people with memory issues
people who's memories are getting worse every day, who's memories are stable but poor, people who can't remember what they did today or yesterday or this week, people who's childhoods are a faded blur. people who have slow greying-out amnesia that seems to just fade in and out of existence, and people who have complete blackouts, and people who have both. people who mourn the happy memories they know they've lost, who fear the bad memories they've lost that still affect them.
people who have "emotional amnesia" that makes it feel like none of their memories are their own, because there's few or no feelings attached. people who can ONLY remember the feelings from certain or even most memories, not actual events. people who's memory issues scare them or make them angry or make them miserable. people who's memory issues get them called childish or difficult or rude. who can't remember the names or faces of those they love. who are constantly forgetting the things that "you'd remember if you really cared". who misplace everything. who remember so little of their lives that they barely know who they are. people who's memory issues come from trauma/dissociation, ADHD, traumatic brain injury, brain fog/chronic fatigue, drug use, alcoholism. people who have no idea what causes their memory issues. people who's memory issues come from something else entirely.
i love you, you're strong, and you deserve support and care for what you're going through. memory issues can be frustrating and upsetting and disabling, and your suffering deserves to be recognized. whether you're soaring through recovery or are only ever going to get worse, you deserve good things in life and to live the fullest you can, regardless of how much you remember.
You likely have the right to access records that explain why your insurer denied your claim or prior authorization request. Use ProPublica’s
Hey y'all. Here's something for you.
who’s gonna tell tumblr that executive dysfunction is more than Not Doing Things?
okay
these are the executive functions. impairment of these functions is executive dysfunction
Oh.
OH
Girl, help. None of my executives are functioning
So…. That means I have executive general failure?
I’m sick to death of hearing “see! Accessibility benefits everyone, not just disabled people/mobility aid users/chronically ill people/etc!!” That shouldn’t matter. Even if the only people in the world that would benefit from an accommodation are disabled people, we still deserve it. I’m sick of non-disabled people constantly being centred and catered to with accessibility content. Every time someone makes an add-on to a post about an accessibility device or whatever, it just feels like they’re saying that our needs aren’t enough to warrant accommodations, it has to benefit non-disabled people too. We deserve accommodations no matter if non-disabled people can benefit from it.
Planning for a flight now consists of planning out how to document the legal violations the airline is inevitably going to commit.
Since I started using a wheelchair, I have had exactly one (1) flight where an airline didn’t break the law.
The question isn’t “Are airlines breaking the law?” They absolutely are, on almost every flight. The questions are “Does the wheelchair user know their rights?” (most don’t), and “Are they physically and mentally able to document the violations and report them to the DOT?” (most can’t).
[ID: @diffusedmuse “One question if you have a moment: do you confront airlines themselves or go straight to the DOT? For example, they often push me into signing a release of liability in case they wreck my wheelchair, which I’m fairly sure is illegal but I’m afraid to say anything and be denied my flight.”]
Under US law, it is definitely illegal for an airline to make you sign a release of liability for transporting your wheelchair. I would definitely advise you not sign any release of liability. The newest statistics show that airlines damage or lose 25 wheelchairs per day. (Source) You can’t afford for them to not fix or replace your wheelchair if they damage it.
Ҥ382.35 May carriers require passengers with a disability to sign waivers or releases?
“(b) You must not require passengers with a disability to sign waivers of liability for damage to or loss of wheelchairs or other assistive devices.”
(Source)
I always insist on having my wheelchair in the cabin, but if the flight has less than 100 seats they’re not required to have space in-cabin, and if you have a power chair it’s not going to fit in the in-cabin wheelchair closet. So I realize some people have to put their chairs in cargo.
Personally I’d pocket whatever release form they gave me, scan it in when I got home and include it in my DOT complaint. I bet the DOT would be very interested to see what release they’re trying to get you to sign.
I have on several occasions had airline employees threaten to not let me fly, try to maneuver me into agreeing to take a different flight, or insinuate that if I continue to insist they follow the law they won’t let me fly. This is illegal, and I let them know that I know that it is illegal.
Ҥ382.11 What is the general nondiscrimination requirement of this part?
“(4) You must not take any adverse action against an individual (e.g., refusing to provide transportation) because the individual asserts, on his or her own behalf or through or on behalf of others, rights protected by this part or the Air Carrier Access Act.”
(Source)
So yes, I confront the airline employees myself, although I realize not everyone is able to do so. I always have a copy of the law with me - I have a document where I put together the clauses that I know they’re going to violate, and I print out a couple copies before I fly. I also have the full ACAA on my phone. Only once has an airline employee ever looked at the law - they generally just flat out refuse to read it - but I have it with me so I can prove I know what the law says. That means that can’t say “that’s not in the law,” they can only say “I don’t care what the law says,” and that is not going to show in their favor when they have to justify their actions to the DOT.
I definitely also report the airline to the DOT after I get back from my trip. The DOT’s formal investigation process is to have the airline investigate themselves and report their findings back to the DOT. IME the airline always, every time, lies and claims they didn’t break any laws. They generally accidentally admit to breaking a couple laws, but for the majority it ends up being a he says/she says situation.
Personally, I want the airline to get fined for every clause of the ACAA they break when I fly, not just the ones they accidentally admit to because they are that ridiculously unfamiliar with the law they’re required by law to know. (The record so far is fourteen clauses broken on one flight.) So as of my last flight I now record every interaction I have with an airline employee. On that flight, the minute I realized they had found a new and ridiculous way to violate the ACAA, I set my phone to video and put it in a shallow outside pocket in my personal bag with the camera facing out. When I got home, I extracted the audio file from the video, made a transcript, and forwarded both the audio file and the transcript to the DOT along with my complaint. When the airline investigated themselves and lied about what they did, I then forwarded the audio file and transcript to them as well and proved that their employees lied. It was interesting watching them scramble to explain themselves.
The DOT takes a year to process complaints, so I haven’t heard back from the DOT on that one yet, but I’m particularly interested to see how this complaint turns out as it’s going to be impossible for them to squirrel out of any of their violations. I have proof.
After that last flight I bought myself an audio recorder (like the kind you use to record lectures in school) which I now have hanging from my personal bag. Some airlines prohibit photography and video in their contract of carriage, but I have yet to find one that prohibits audio recordings. Part of my prep for this trip has been testing that audio recorder to see what the range is and how well it records, so I know where on my bag to hang it to be sure it records everything that happens.
If you’re recording audio, keep that in mind when you’re dealing with airline employees. Ask for names or read out their name badge (”Jane Smith, right?”) and describe what’s happening if it’s not apparent from what they say. (”Wait, so you’re telling me I need to sign this release of liability form before you’ll transport my wheelchair? You do realize that’s illegal, right?”)
I have an audio recording of an airline employee on my last flight saying “I don’t care what the law says!” and my response which was “I don’t think the DOT is going to be very impressed with that.” I’m pretty sure they’re not. I can’t wait to see the DOT’s response to the airline.
This is absolutely amazing. And it’s great that OP outlines several different levels of protecting yourself against and documenting these illegal actions—because, yeah, not everyone can or wants to go All The Way. But to those who do? We salute you.
Anyway, know your rights when flying, y’all [same source as above, we just wanna highlight it].
Something I want able bodied people to understand is that I don't want a diagnosis cause I wanna be sick so bad; I want a diagnosis because there is already something wrong with my body but I don't know what the fuck it is.
theres something about being disabled and needing to sit down constantly in public spaces that makes you notice how often benches are put up as tributes and memorials. and before i hit an age where i really started to need them as frequently i think i never fully understood the sentiment but now its become very endearing to me. a bit of relief and care for you in the name of someone who offered us the same… i dont think i had a point with this post but i hope everyone thats been memorialized as such knows how loved they were to become synonymous with respite even to total strangers
Can the “disability allies” who know nothing about disabilities stop fake claiming disabled people. You’re not a hero and you’re not going to get a pat on the back. All you’re doing is making it so disabled people do not receive the support and care they need.
For the last fucking time. It’s better to let a few fakes run around than jeopardise the health and wellbeing of entire communities. If someone is spreading misinformation or harm, that should be dealt with. That is when you take action. Most definitely not when you look at someone and you think they “don’t look disabled”. You cannot determine a persons medical conditions based on vibes and a single video of them. Come down from heaven arsehole you’re not Jesus.
Sometimes being disabled means you can't go to college, can't get a job, have to live with your parents and that's ok. For a lot of us it means not being able to go outside most days, not being able to get up or move at all. It can mean needing someone to wash us or feed us or help us with the bathroom and that is ok. It doesn't mean that we're less than or that we aren't worth anything.
And it's valid for us to be mad about it. Even if we can overcome some of these things with accomodations we're allowed to be mad that we're in this situation, and wish that we weren't disabled because I sure as hell hate this shit.
just a kind reminder to please be kind to the people you know with gastrointestinal disorders/conditions! they're embarassing, often very painful - sometimes debilitating - and very hard to talk about without oversharing a lot more than most are comfortable with.
if someone you know:
- spends a lot/long time in the restroom
- has a colostomy bag
- requires diapers or similar implements
- experiences a lot of gas and/or bloating
- requires tube feeding or other alternative methods of nutrition
- has food restrictions (e.g. cannot handle a lot of spices, certain proteins, etc.)
- eats a lot, or only a little
or other similar factors of their life...
please be patient and understanding, it's hard having guts that really like disagreeing with you!
