Also, if you are a non-disabled person reading this, please help advocate for accessibility. It gets tiring being the only person fighting for basic access rights.
Hiring a mobile changing places toilet for people who can’t use standard accessible toilets– these are fitted with an adult size changing table, hoist and room for a someone with a large wheelchair and two carers to move around in.
If your event is on grass create pathways with mats to avoid people getting stuck in mud if it’s rained recently
Covering cables in a way that allows wheelchairs users to go over them independently and painlessly (please install a ramps if you use those ones that look like speed bumps)
Wheelchair access to any stages especially if acts are inviting members of the audience on stage at any point… maybe you have no wheelchair users performing, but you never will if it’s not accessible
Publish details about the length and surface of any march. Is it hilly? Is the road covered in potholes? How long is it?
It’s really irritating to me whenever I see videos of other severely disabled people saying it’s hard to wash their hair because of their illnesses and people suggest “just” cutting it off. As if hair isn’t a huge part of peoples’ identity a lot of times, if not self expression. And the misconception that shorter hair means it won’t be as bad for someone with severe myalgic encephalomyelitis is just incomprehensible to me.
If they’re not suggesting something, believing it’s a one size fits all solution (bed hair washing set ups, shampoo caps) their solution is to just… get rid of a part of our identity to suddenly “make it easier”. Long hair isn’t the issue when every movement and sensory input is punishing. Making it easier isn’t always the point. Sometimes the point is just sharing “this is what I go through because of my disability, something you might not think of if you’re not disabled/don’t have my disability”. It’s no different than any other person showing a day in their life or how they care for their hair. It’s just not conventional for you to see people still struggle with all the added help.
Why would your first suggestion be to remove another part of myself? Why would a positive resolve to you be for my friends and people like me to change more of who we are just because we are simply sharing something that will affect us regardless of the length of hair we have? We will always struggle with personal care tasks/ADLs but that doesn’t mean we’re looking to make it the easiest way if it means losing more and more of ourselves. Sometimes even with a struggle it is the easiest without giving up the final fight with something. Respect that.
AHAH found my post before my blog was nuked. I’m never shutting up. I was made to haunt to the internet.
I wanted to also say that even if it is more work, you’re allowed to want to keep that effort as long as possible. You’re allowed to want to be “extra” in your care. You’re allowed to want to feel dolled up and pretty. You don’t have to give in to people telling you to either thin or cut your hair if YOU don’t want to. You are allowed to have it as you are, even if you have rapunzel length hair and it technically “WOULD” be easier, you’re not wrong for wanting to keep that part of yourself.
One time when I was a kid a group of girls and I had to treat another student for hypothermia by ourselves because she had so many invisible health issues that the adults we asked for help didn't believe us. The student in question was actively hallucinating. When I finally ran for help the people I grabbed were slow as shit to respond, casually joking about how "dramatic" the person in question was.
The kid was picked up by an ambulance 30 minutes later.
Now as an adult working in security I get SO MANY folks- upper-middle aged mostly- coming to me to 'rat out' people they think are faking it.
I was once sent into a bathroom because a client demanded that the "fucker won't get out, so good drag them out"- I was NEVER going to do that, so I did a wellness check instead. You know who it was? A person recently released from the hospital after a car accident. They had a hole in their skull and major hearing loss. They couldn't answer the owner because they couldn't HEAR the owner.
Another time about a homeless man who got around town by kicking the ground from his wheelchair. "You know he doesn't actually need that thing, his legs work fine, it's just for pity points"- Oh, so he's not paralyzed, his wheelchair is performative? Funny story Dale, I actually know that guy, he was backed over by a truck and has chronic pain from his shattered pelvis. But sure, let's make him stand up and walk everywhere so nobody feels too bad for him and tries to help him or something.
"She doesn't need that scooter, I've seen her get out of it."
"Look how fat he is, because he just rides around and refuses to get up."
"She doesn't really need that cane- she comes here without it all the time"
Sincerely, truly, from the bottom of my heart- as someone who isn't physically disabled but hears this shit all the time- fuck off
Reminder that seeing a disabled person participate in a task once does NOT mean it is easy and straightforward for them and that making assumptions (and loudly voicing said assumptions) based on that is incredible unhelpful
You don't see the preparations made in advance to be able to tolerate the event.
You don't see the discomfort or pain they're experiencing during the event.
You don't see the rest after the event.
You don't see the crash or flare up that the event may cause.
You haven't considered that their disability could be dynamic. Sure, they may have managed an event however if their condition is dynamic there aren't any garentees they can handle it multiple times, equally there are no garentees they'll be able to handle it in the future.
I don’t care how they’re marketed, these things are not wheelchair accessible, especially for large power chairs.
ID: a yellow and black plastic cable cover which is approximately 5-10cm tall with steep sides and looks like a small speed bump /end ID
Every time I go over one I need someone to help hold my chair and get me over it safely. Even with that support it hurts like Hell and has caused whiplash injuries for me in the past. It’s also very unsafe for others because even with support I cannot 100% control the angle my chair will end up lurching over it (and my chair weighs over 150kg without me in it so it’s not something you want to collide with). It’s also terrifying and makes noises that make me very concerned for my chair’s structural integrity.
If you want your event to actually be accessible to wheelchair users then consider using something more like this:
ID: the same kind of cable cover but it’s fitted with a much shallower ramp with the international symbol of access embossed on the black plastic. The ramps are about a foot long on either side of the cover /end ID
> medical problem
> unsure if it's serious or will go away on its own
> sees a doctor to be sure
> "why the fuck are you here. this is nothing. it will go away on its own"
> medical problem
> unsure if it's serious or will go away on its own
> decide to wait to not overreact
> problem remains
> sees doctor with concrete problem after all
> "why did you wait so long. we could have done something if you had come immediately"
ME/CFS culture is when you feel like you have to pee so for the next twenty minutes you bargain with yourself on whether it's worth it to get up and go to the bathroom
So can non-disabled people stop doing that thing where they act like it’s morally righteous to force yourself to work while you’re sick and assume taking sick days automatically equates to laziness. Any time now. That’d be great
The leader of the scout group I help out at approached me out of hours while I was walking to work to tell me that people have been talking behind my back because I missed more sessions than I attended this term (on account of having Covid twice) and was like “We all show up when we’re sick because we take responsibility” and I felt really shitty and guilty and cried the whole workday then I got home and told my mum and she was like “So they want you to throw up on the kids? That’s dodgy. They don’t even pay you. Stop going” and a wave of serenity hit me like a bus
“It just means you have to work double as hard as most people!”
Well maybe I don’t WANT to work double as hard as abled people!! Maybe I deserve a BREAK!! Maybe I’ve been working MORE THAN double as hard for MY WHOLE LIFE and it’s led me to immense burnout & caused me to develop several MORE disabilities!! Maybe I should be ACCOMMODATED so I don’t have to KILL MY BODY AND BRAIN over trying to do what abled people can do!! Maybe I DON’T have to work double as hard!! Maybe if there’s the option to let me NOT work double as hard, I should have it, because I’m already working double as hard JUST TO SURVIVE!!
Why do you think disabled people deserve less rest than mentally & physically abled people?
Can everyone who makes video content do a Deaf bitch a favor? Watch your shit with the captions on and the sound off, and then do another round of editing to fix things including but not limited to:
Captions cover the spot on the screen you put the information I need
The dialogue is captioned but not the song you have playing that the dialogue is responding to
You only captioned the person on the screen, not the person off screen who is also talking
No captioning of critical sound effects (alarms, bells, dogs barking, etc)
Speakers are not labelled at moments where it is not clear on the screen who is talking.
Captions cover the spot on the screen that you put the information I need!
Other d/Deaf people welcome to add.
This post brought to you by the fifth video tutorial I could not follow because the bad, auto-generated captions covered what I was trying to watch today.
semi-regular psa that depending on where you live, getting a few doses of narcan might literally be as quick, easy, and free as pouring river water in your socks. it's small, light, and easy to carry around in any kind of bag bigger than a wallet; it's simple to administer; it doesn't become hazardous after its expiry date, just very slowly less effective but still okay to use; it's safe to give multiple doses of it in succession; and it won't cause any harm even if given to someone not experiencing an opioid overdose. (due to the nature of how it works it is a potion of instant withdrawal and might make someone very sick very quickly for that reason, but you can't give someone a hazardous overdose of narcan.) even if you don't think anyone in your life licitly or illicitly uses opioids it's still worth it to pick some up just in case. if you are the Purse Bitch of your friend group and have ever said something like "well what if we do need two full boxes of bandaids all of a sudden" then you simply owe it to yourself to see if a public health center near you has a free narcan distribution service.
For those curious on how to respond to an overdose using Narcan/naloxone, NYC’s health department has a good video on the subject. For those in NYC, their website also has information on how to obtain it.
always great to carry narcan, and while you CANNOT give an “overdose” of narcan, you can effectively drown somebody if you give a large dose. the “drowning” is flash pulmonary edema, and is associated with larger amounts of narcan being administered to somebody who is overdosing.
so absolutely please get some and carry it with you, and remember that you don’t need 20+ mg of narcan to reverse an od!
Adding onto the last rb as someone who works in harm reduction and has given overdose reversal trainings.
First want to say that OP your post is great but it's important to mention that you NEED to wait 2-3 minutes before administer a second dose of naloxone (the generic and frankly better version of Narcan, Narcan is a for-profit brand so if you can it's better to get the generic from your local SSP or HD), for folks who are dependent upon or otherwise regular users of opioids naloxone can precipitate pretty nasty symptoms of withdrawal, no one is gonna feel *great* after an overdose, but acute withdrawal can lead to vomiting, shakes, and a whole slurry of symptoms ranging from unpleasant to medically dangerous.
While were here, here is a quick runddown of symptoms of an opioid OD to look out for:
- Person’s skin might look blueish or greyish, depending on skin tone
- Skin might feel cold or clammy
- Might hear “agonal breathing” - a gasping/gulping/grunting sound sometimes mistaken for snoring
- Sometimes you might not see or hear any of these obvious signs. The person might just seem like they are sleeping or in a heavy nod.
You can check for responsiveness by verbally calling for them and doing a sternum rub (running your knuckles up and down the center of their chest), but don't spend a bunch of time trying to get them up-- every secound counts.
Second major point: when reversing an OD you are looking for a return to regular breathing, NOT for the person to wake up. Adulterants like xylazine (tranq) and medetomidine are fairly common in the US fent supply, and given that these are sedatives they can put folks out for hours at a time. Make sure to give rescue breaths and monitor breathing continuously until emergency service providers arrive (or if you are unable to call 911/999/etc, have someone stay with the person for at least 90 min). The biggest mistake I see people make is, since they're in a panic, they continuously administer naloxone without waiting and without watching for breathing bc they're worried about the person not coming to. I get that it's really scary, but it's vital that you're focusing on the correct tells.
Like last rb said too, you don't need a crazy mg amount to reverse an OD, in fact you don't need more than 4mg max (6mg if the person REALLY isn't breathing) for nasal naloxone and 0.8mg/ml max for intramuscular naloxone. This is about 2 doses for each type, and often one dose is enough to stabilize someone (when the medicine wears off any opioids left in the system will rebind to opioid receptors, though, so keeping a dose on hand is vital especially if they can't get to the hospital for monitoring). There is no evidence that high dose naloxone such as Kloxxado is more effective in reversing overdoses, and actually poses a greater danger due to its ability to quickly lead to acute withdrawal. These products are produced by for-profit companies co-opting panic surrounding the present street opioid supply, and are not recommended by anyone with experience in the field.
If you want to find free naloxone near you but aren't sure where, NextDistro is a great resource for those in the US
I'm in awe of how we ran historical revisionism on the civil rights movement so bad that people truly believe it was quiet self-sacrifcial non-disruptive christ-like activism that forced progress and not — like — the incredible economic pressure of boycotts and outbreaks of illegal civil disobedience
Yapping to the choir but eughhh it burns me up girl effective protests have to be loud and inconvenient for change to happen because silent cries die in the dark that's the entire pointtt
Also, a lot of the so called harmless examples used for peaceful protests were specifically supposed to be disruptive as all hell. Like, take sit-ins, for example. What you were probably told is that black people just refused to leave white only establishments to make a point.
But how they actually worked was manipulating racist policies to cause as much of a delay as possible. They'd sit down at the bar to order (that's how those restaurants worked, you had to sit down to order and there weren't many tables) and when the waiter said they couldn't serve them, they'd respond that they would wait until they could be served. And then all their friends who they organized this with would do the same, and they would sit there at every seat until they're holding up the whole line. Then nobody could order and the restaurant was forced to either close, serve them, or try and fail to work around them. It wasn't just to make a point, it was to cost them money and time.
Even what was framed as "quiet peaceful protest" was actually very disruptive both socially and economically.
And the struggle didn't stop after formal integration, once the Civil Rights act had passed. Because even when they are legally required to serve you, they can make you really fucking uncomfortable and threaten you and the cops probably will take their side.
For one example, there was a cafe that would serve Black people, but would then publicly break the dishes so that no white customer would ever have to eat off a dish a Black person had eaten off of. This was done publicly, right as the Black diner was done eating. The waitress takes the plate and smashes it. This is a signal both to the white diners "see, we hate them just as much as you do, you're safe here" and also a threat of violence to the Black diners. "If you're not careful we'll smash you just like we did this plate."
But at the same time, if Black people go there and eat every day ... how long before the cafe can't afford to do that? How long before they have broken so many dishes that it's eating into their profits? How long before the white diners start getting used to eating alongside Black people and simply don't care as much any longer, or start getting annoyed at the noise and fuss and mess?
Black people eating in white establishments was loud, inconvenient, and disruptive. Because that's the nature of challenging the status quo.
All of this, plus a couple of additional thoughts:
1. Folks in these movements trained. They were disruptive and they were strategic about it and they trained so that they could stay calm in terrifying situations and create the targeted disruptions they wanted to create and not get goaded into deviating from that. Absolutely badass.
2. Not at all a criticism of OP because I think their description of people thinking it was "quiet self-sacrificial non-disruptive christ-like activism" is dead on, but I think that description itself speaks to the same kind of revisionism re: the Christ of the Gospels and how disruptive he was and why, and it's important to remember that, especially in this era of renewed christofascism. Rev. Dr. King was a prophet and you will never convince me otherwise.
Nonviolence is not a goal, it is a strategy. A deliberate strategy at a calculated time in response to violence of the oppressor, which can be effective if it shames the perpetrators. See: why Selma or Montgomery was chosen by the SCLC (they had the most racist unhinged sheriffs who would deploy maximum force, which got shown on nationwide broadcasts and finally moved the public).
Nonviolence doesn’t mean you don’t carry weapons if necessary, as many organizers in Selma did. Nonviolence doesn’t mean that you accept that people will throw bombs into your family’s home, as they did to MLK.
And yes, the absurd simplification and bastardization of this strategy is deliberate. It went from being a tool for fighting for liberation to being a justification for more violence and oppression used against future generations of protestors who didn’t meet the standard of perfectly obedient nonviolent non disruptive protestors. Which of course there is no such thing.
And it’s all a lie. Know that people in the movement, at the time, were called criminals, because they knowingly and deliberately broke laws with the idea that they’d get arrested. Know that most of the country hated King at the time of his death. Know that no movement demanding change from the system will ever be loved by those in power.
"exercise will give you more energy" gets said a lot as a common piece of health advice but I think it needs to be expanded into "exercising will make you tired while you do it, and you will continue to be tired immediately afterwards, sometimes even the next day too, but over months of consistent exercise, your muscles will get stronger and therefore get less tired out by everyday activities, making you feel like day-to-day life takes less physical energy than it used to"
everybody: you’ve got to advocate for yourself in medical settings!
medical professionals when a patient advocates for themselves in a medical setting (x100 if that patient is a part of any minority): damn. you’re a hypochondriac crazy bitch who has every mental illness and is seeking every narcotic in existence. that’s the only reason you’d be disappointed in the care you’re receiving here. in retaliation, we will be even less helpful and less sympathetic. our jobs are hard. people are dying. we don’t have time to deal with anyone who is slightly inconvenient for us.
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