izzy's playlists!
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"I'm Dorothy Gale from Kansas"
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@curlyspoonie
Walkable cities and public transit mean nothing if they’re not accessible to disabled people
#like are there places to sit down?????? are there stairs everywhere? are the sidewalks uneven? #can your buses and trains actually accommodate a wheelchair user?
if you are not wheelchair bound, and need to step out of your wheelchair, please do it.
even if youre in public, dont worry about what people will think or say, if you need to get out of your wheelchair, do it.
you dont owe them an explanation, you dont deserve whatever stares or comments youll attract, and you are still disabled, you still need the wheelchair even if you dont need it constantly.
dont let what people might say or do stop you from getting out of your wheelchair.
I get weird looks when I’m out on a walk and have to get up to fix my smart drive motor, when I cross my legs, when I pull my own chair out of the trunk and put it together. But none of those things mean I’m not disabled and don’t need my chair. Use your mobility aids!
I’ve been to the hospital many times, and I’ve had bad nurses and doctors and good nurses and doctors. My recent overnight stint had pretty decent doctors and nurses. As patients we will certainly remember the more unpleasant experiences and be rightly angry about them.
However it’s important to remember that not all nurses are the bully from school. Many are genuinely nice and caring people, like my aunt who was a maternity ward nurse for many years. Many of these people are put under pressure of a for-profit medical system that forces more patients on less nurses. We should be outraged at genuinely cruel medical professionals, but if we want to be acknowledged as human too, we should do the same for them and advocate for better working conditions for nurses.
Yeah they’re supposed to be professional and not be rude but is anyone truly perfect at the end of a double shift with double the work? And some nurses are disabled too. I’m not against venting against terrible nurses but when we act like the problem is just the wrong people going into nursing we ignore a large problem about the state of nursing jobs and overworked underpaid caregivers that ultimately hurts and potentially kills us. I personally don’t want to do that.
I had some GREAT nurses when I was in for my colonoscopy. After, in recovery, my nurse went so far as to spend 10 minutes using alcohol wipes to gently remove my IV bandage, because I told her it rips my skin because of my fragile EDS skin. Did she have to do that? No. Did she have other stuff to do? Yes. Did I really appreciate it? SO MUCH YES
Twice when flying I have had Flight Attendants repeatedly insist I needed a wheelchair pusher - for my POWER CHAIR - because they couldn’t imagine I could possibly find my next gate to make my connection.
Despite the fact I had obviously found the gate for my first flight without any help.
Both times they called someone over my protests only to be hugely offended when I headed off without them.
The infantilization of disabled people is a huge issue.
One of those times I was even traveling with someone. Apparently traveling with a disabled person makes you both incompetent because fuck Ableds.
I just realized this is a violation of the ACAA.
“§382.11 What is the general nondiscrimination requirement of this part?“
(2) You must not require a qualified individual with a disability to accept special services (including, but not limited to, preboarding) that the individual does not request.”
I had a similar incident on another flight within the last six months. Guess who’s going to be filing another complaint with the DOT?
When you ask a fellow spoonie how to get your doctor to send you for an upright MRI because of concerning symptoms that are being ignored (asked because this person has my condition, has had an upright MRI, and subsequent spinal fusion because the upright finally showed the full picture), and they say you shouldn’t dictate your care and should trust your doctors and just let them steer your care 🙄🙄🙄🙄 If I do that, I will literally get no care. My doctors do the bare minimum, and aren’t interested in trying to look deeper to find out why I feel like shit constantly. And I see people in my position all the time.
No hate to those of you with good insurance, good doctors, and an actual treatment plan prescribed by your doc, but some of us have doctors that ignore symptoms, don’t bother to even read your records, and generally treat you like a fraud. I have been have severe migraines with neck pain and pressure in the base of my skull like you would not believe (and then my fucking eye started protruding during one), and my supine MRI showed nothing, likely because, as many zebras know, supine MRIs can hide instability.
FIGHT FOR THE TESTS YOU NEED. if your doctors aren’t listening, but you can’t just pick up and find another doctor, ADVOCATE for yourself, don’t let them tell you that your concerns are invalid, and DON’T let them ignore your symptoms. Doctors don’t know everything, as much as they want you to think they do. I had a doctor, who had practiced for like 20 years, tell me that EDS was treated with steroids. This man clearly A. Hadn’t bothered to look over any of my paperwork, because I specifically stated my condition and that steroids were not good for people like me and B. Clearly hadn’t continued his education since his med school graduation. If high school teachers have to do continued education, doctors can read some fucking updated studies.
DOCTORS WORK FOR YOU. You pay them, sometimes hundreds of doctors if your specialist doesn’t take insurance like mine, because they are supposed to do everything they can to find out what’s wrong. If they ignore it, yell about it. I know I fucking will.
Hi everybody, yet another spoonie with a Go Fund Me
If you would like to hear my diagnosis story, please watch my video, but allow me to give you a brief explanation as to why I am trying to raise money. I have been diagnosed with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, chronic migraines, sleep apnea, Raynaud's, chronic fatigue, and chronic pain, along with a yet to be fully diagnosed GI problem (basically I can’t eat anything without severe pain, bloating, and running to the bathroom every 10 minutes.)
My mom has been doing everything she can to take care of me, but the unpaid bills are piling up, and I am now needing a power assisted wheelchair, a new set of ring splints, and I am trying to get a service dog for mobility assistance and medical alert. Being that we are already in debt from medical bills, our only option is to try crowdfunding.
I would greatly appreciate it if you would share my story. I am trying my hardest to keep fighting this condition, but I need some help to get some very important aids that will greatly improve my quality of life, and my ability to participate in life again.
Ihttps://www.gofundme.com/f/gqqv9b-help-me-fight-my-rare-disease?fbclid=IwAR2o-6qxbbGFA27n9CQhcxBv8TrlC8OILGFfVN8oyG0aFlh1Xd3OTQ7nWlI
Um, I reached 200 followers on this blog? I totally missed that because I’ve been busy trying to film content for my YouTube channel, dealing with my health, and trying to raise money for various things (like a power chair) but holy shit? I never thought my little chronic illness side blog would ever get so many followers.
Wait can the cold be a reason for why I am having more pain than usual?
Yes, friend! Especially joint pain. I know when there’s a cold snap physically before I ever step foot outside to feel how cold it is.
Hell even my nerve pain is affected by weather changes. Extreme cold, extreme heat, and changing front systems all mess with me.
My nerve pain flares like a BITCH in the winter. It sucks.
AHH! I'M SO PROUD OF MYSELF
I managed to get a total of 834 calories in today and didn't vomit!
I know that's not a lot, still not a healthy amount but when anything you eat/drink will make you vomit or feel like crap that's a big deal to me!
I am so bloated i look pregnant and my belly hurts so bad but I haven't thrown up yet!
Congrats man! I’m about to attempt my first meal (at 6pm, I know, I know) and I’m dreading the fallout tbh. GI problems are a bitch.
Welcome to my Holiday shopping nightmare..
{ID: 4 images of shelves and clothing hanging racks too close together for my wheelchair to fit between. End ID}
All of these images are from the same store, and I could have taken SO many more..
Thiiiis!
Why don’t they make aisles bigger? The amount of times I’ve gotten stuck down an aisle and can’t turn around, so end up accidentally knocking something off the shelf... ugh. Not easy!
I always feel like I’m in this scene in Austin Powers when he’s in the buggy and can’t turn around, haha. It’s so irritating, though.
Holiday shopping should be a lot more accessible.
I've worked in retail stores before where I had to argue with management over the placement of displays and racks because their placement would make the store inaccessible to someone in a chair, or even a baby stroller. Management will try to cram as much as they can into the store in the hopes people will buy it, they don't care about making or keeping their store accessible unfortunately
Funnily enough they start caring when they have to explain to the DOJ why they’re violating federal disability laws. If you’re disabled you can and should report them.
I currently work at a retail store and my manager is always pushing us towards this kind of lay out.
He believes it forces people to walk between racks, always touching something. And if you touch something soft enough it’ll send the message to buy stuff. It’s a tactic used in most non-big box stores
FORTUNATELY for us, even if they racks are close enough to constantly be touching something, the bases are small enough not to hinder wheelchairs, walkers, or strollers. But not all retail shops have well balanced, small base racks like we do.
Under the ADA the measurement isn’t made from the base, it’s made across the narrowest point. If that’s not at least 36” someone is eventually going to report him (if he’s lucky) or sue him (if he’s unlucky).
Oh wise @phoenixonwheels, does this apply to local, small stores that are in, say, historic towns? I love the local shopping district, and when I was there last I went into a store where I couldn’t get around at all with my rollator, it was such a shit layout. Does one have the same ability to report access issues in this instance?
What the literal fuck is this nonsense? Who let this bitch practice medicine? Did anyone think to suggest putting some fucking medical evidence in this piece?
Imagine if you will leaving the house without having an encounter with an Ableist asshole.
Guy behind the counter: gesturing at my wheelchair “What happened?”
Me: “I was born.”
Him: “No, but what HAPPENED.”
Me: “I was born.”
Him: “No, but what… HAPPENED.” (gesturing more wildly at my chair, like I somehow didn’t understand his fucking rude question the first two times)
.
Fuck you? I’m just trying to check out here. I don’t have to answer personal medical questions from complete strangers.
Also, I’m used to this bullshit from Baby Boomers but this was a Millenial, so if y’all hear someone spouting this bullshit I’d really appreciate if you’d take the asshole out back and teach him some goddamned manners already.
Had no less than three people grab my cane today when I had leaned it against something because apparently it was proof I didn’t need it. No Sheryl its just proof I need two hands sometimes.
Also had a store employee accuse me of being drunk because I wobble a few feet away from my cart without my cane to grab something; she almost threw me out.
A day without abelists would be divine
Oh damn the amount of times I’ve been called weird for things I do to help with sensory issues.
Me: *covering my ears during a fire drill*
Person: dOnT thAts wEirD
Me: *eating my food one at a time* (finishing each food before I move onto the next)
Person: here have some of this
Me: ok let me finish this first
Person: what why
Me: *explains*
Person: yOu cAnT rEaLly haTe iT thAt mUcH iTs nOt thAt baD jUst eAt thiS
Me: *stimming happily*
Person: doNt dO thAt qUieT hAndS
Me: *existing*
Person: AUSTIM IS BAD FEAR IT
I haven’t had my cane for that long but I’m already fucking sick of how people react to it, I’ve had people literally stop their conversations to turn and openly stare at me for walking past them with it like I’m a fucking alien or something. The other day I had a group of teenagers point at my cane and hysterically laugh about it and just, why the fuck do people think this shit is okay
Old people death stare me on the bus when I sit in the disabled seats and as soon as I get off the bus and they see me walking with my cane they just hide their heads in shame.
Bus drivers also have a tendency to grab my wheelchair when in getting on/off. Please don’t touch someone’s wheelchair without asking, it’s the same as picking someone up and moving them. You’re not helping us, you’re making our lives worse. If we need help, we’ll ask.
If I’m wearing my vogmask in public people stare, or sneeze/cough at me and snicker. I’ve had people deliberately spray aerosol around me because they knew I’d have an asthma attack.
We’re not here for your entertainment, we’re people so treat us like we deserve.
Me: *happily existing with my cane*
Person: but… why do you need it?
Me: … to walk?
Person: no like……… why?
Me: I can’t walk easily without it?
Ableds are not entitled to our entire medical history or backstory!
Not to mention the amount of times people just start to push me if I’m in my wheelchair. I would ask if I wanted you to push me, would you randomly pick someone up and carry them? No? Then don’t push wheelchair users without their consent!
The amount of times I’ve had people snarkily ask me why I need a service dog is obscene! Also just randomly touching me to get my attention or whatever?!? Don’t ever touch someone without their consent?!? I can’t believe I have to say this?!?
Also with my mobility devices; cane, forearm crutches, wheelchair. I need them because I need them. I’m not sure where this concept started of if you can’t visibly see what’s wrong, it’s someone faking it came from but it needs to stop.
Don’t touch me. Don’t touch my service dog. Don’t touch my mobility devices. Don’t ask me what’s wrong. Don’t assume anything about me. ITS NOT YOUR BUSINESS TO KNOW.
It’s alarming too how uncomfortable disabled people get when someone asks to pet the service animal when there is a vest on them thay says don’t touch. Then the disabled person has to be the “bad guy” and say no, firmly.
A lot of service dog handlers have anxiety disorders or PTSD or are autistic or HoH/Deaf, just to name a few conditions where the person most likely does not want people staring at them or asking them questions or requiring them to respond to complete strangers.
How about everyone just leave disabled people, including those with service dogs, the hell alone?
I’m not sure if this applies to me, but I have seizure disorders and I NEED my sunglasses on while I’m outside, sometimes inside. People including my close friends see me with the glasses on and TAKE THEM OFF ME so that they can wear it?? I am absolutely terrified of my disorder and need to go to the hospital if I have a seizure
i cant count how many times somebody saw me jogging/ switching from a wheelchair to my cane and was like “I KNEW YOU COULD DO IT ALL ALONG!!!”
I had an old man ask me why I need a walking cane, when I replied “I have bad joints” and laughed in my face and said “not as bad as mine!”
Disability is not a competition. If you see someone with mobility aids, especially a young person, dont bother them. I know I get bad anxiety about people judging me when I have my cane. We’re people, not something to gawp at because you “dont see that often”.
Fuck allllll the people in these stories and those like them. Someone having a disability isn’t dehumanizing or a chance to joke or be an asshole. People need to get their head out of their asses and be decent fucking human beings for ONCE. Ugh this makes me so mad for folks with health conditions!
May I add: touching/grabbing/moving someone’s physical aid (cane, crutch, wheelchair, etc.) without permission is physical assault, and the person who’s aid you’re touching (WITHOUT PERMISSION) can take legal action against you, IIRC. So ASK if you can touch, BEFORE you touch it, WAIT until they answer, and remember that THEY CAN SAY NO. Just some food for thought.
One of my old students who is now in PreK is HoH and the PreK teachers REFUSE to work with him. Its mostly just the one, but they just always say hes slow or refuses to listen. Like, hes not slow and he does listen but not if he cant fuckin hear you. You need him to look at you for him to understand and then he understands. But ig the teachers are lazy.
Its ok tho bc they’re probably about to get fired lol.
My last job tried to say my hearing disability and the mannerisms I’ve developed to cope with it were “affecting the clients negatively” and “needed to be addressed,” which should not have surprised me since I’d already been told with a straight face “We’ve had complaints from other staff about having to tell you things more than once.
And airport security is a nightmare. Last time I flew out of Shannon I was trying to clarify what they wanted me to do which caused the bitch to lose it and yell at me “just do as you’re told!”
I bought 2 shirts that say “Hard of Hearing Please Speak Clearly,” in the hope that pointing out o have a disability might at least force some people to consider the optics of the situation and calm the hell down.
I get some stares with my cane, but what drives me nuts is the assumption that it’s fine to joke about if needs look different than expected. Went out with my partner the other day and grabbed my walking stick because I’d left my cane in the car. While out at a butterfly house we ran into someone from shul, and her first joking comment was “are you going to squish the butterflies with that?” I don’t dislike this person, but I swear to G-d every time I’m out with that stick I get at least one joke about hitting people and I’m very done
Things Ableds have happily thrown disabled people under the bus for:
Empty boxes
A rack of mugs
A dish cart
One more parking spot
A few more cards
10’ less far to walk
Advertising
Inventory
Shopping carts
Remember folks, the Ableds do not care about you! Literally any excuse will do. :D
I’VE SEEN LITERAL DUMPSTERS–
I could’ve sworn I took a pic of how this walk for suicide awareness event I went to put the port-a-potties in the handicapped spaces but I can’t find the pic 🙃 they blocked four disabled spaces!
Yeah.. this happened in front of my doctor’s office.
My favorite part was how many people got mad at ME for calling him out by posting it online.
“He’s only going to be a minute. It’s not like he’s taking up an actual space. He left both handicap spaces open. What an asshole thing to post. Do you want him to get fired?”
Yes I do want him to get fired. How do I arrange that?
In case anyone doesn’t know, this asshole is currently blocking two disabled parking spots by parking on the access lane. I have seen people get two parking tickets for this slick move, and tickets for parking in a disabled spot without a permit are super pricey.
it also looks like he parked right where the curb ramp is too, so now literally any disabled person who can’t step up onto a curb won’t be able to get onto the sidewalk, regardless of if they needed those parking spots as well.
Holy shit he did. How can we get him fired?
I don’t have photos but I’ve seen people put banners in the disabled parking space outside a store that sells mobility aids. I was going to get my wheelchair wheel re-aligned which made it particularly ironic. Leaving ladders in front of the button to open an automatic door is another one I’ve seen more than once. That’s not to mention the amount of times I’ve seen bars/pubs/clubs put huge ashtrays on the flat sections of ramps, because that’s not a safety hazard at all. People have moved my cane from where I have leant it behind me while sitting down so that they can put their backpack where they want it, while I was sitting there glaring at them. Abled people put their convenience on a higher priority level than our ability to exist in public at all.
It’s so obvious that they see accessibility accomodations as some arbitrary imposition, and that they don’t see the people who need them as people, or as needing them. The bare minimum of accomodations will be present and those will still get rendered useless by ableism.
In the past month or two, I’ve seen bags of sand, and traffic cones being stored in disabled spots. Because that’s where they belong...
Me: okay, we got stuff to do today, let’s go!
My body: sweet! we’re out of energy btw
Me: ??? I just woke up???
My body: yeah uh well you see we kinda,,,, forgot to make energy
Me:
My body:
Me:
My body:
Me: you FORGOT-
every goddamn morning
Thoughts on power chairs vs. manual chairs with power assist devices? I’m debating between them, but most of the sites don’t seem to have customer reviews which doesn’t help.
More range of motion and freedom in a assisted manual chair, as long as your arms aren't too impaired (hemiplegic i.e.).
[But well... On the downside I should spend 330 bucks on in-App-Stuff to be able to use the full assistant function.]
My shoulders are permanently subluxed and pretty crappy, so I can’t push myself in a manual chair, but I assume that some manual function for small areas may be useful, which is why I’m stuck between the two. Plus I’m also working on getting a mobility dog, which could possibly be trained to pull a chair.
Ableist: “That disabled person on TV can swim a mile despite their disability, so what’s your excuse??” Disabled Person: “Well, that non-disabled person is playing for a national team, what’s your excuse for not being able to do that?”
Thoughts on power chairs vs. manual chairs with power assist devices? I’m debating between them, but most of the sites don’t seem to have customer reviews which doesn’t help.
