having an invisible disability sucks sometimes. rant incoming on accessibility.today is another day of emailing a standing-only venue to ask if they can stick a bar stool or something in a corner for me so i don’t (a) faint in the middle of a show or (b) get trampled by all of the standing people.i’ve had wonderfully accomodating venues, but this one has no disabled seating section whatsoever and no mention of ada or anything in that vein on their website - i’m just emailing the venue with a sincere plea. i don’t know what i’ll do if they say no - not go? risk sitting on the floor and hope no one steps on me?for me, the worst part is the line for doors. if it’s still, i can sit, but if it’s a slow shuffle forwards i am genuinely incapable of standing in the line. i feel like such a jerk walking past the line for doors to tell whatever security guard’s at the front that i need my seat, especially because i’m sure that to everyone else it looks like someone perfectly healthy (lol) just skipping the line.have anyone else dealt with this? mostly looking for commiseration, but if anyone has any helpful advice i won’t say no.
Postural Orthostatic Tachycardia Syndrome (POTS)
I threw myself into a severe MG flair trying to stand in line and during a standing only concert. I felt tired but fine during, but the next day I could barely breathe I was so exhausted.
If you ever want to commiserate even further your more than welcome to message me we have a lot of symptoms in common!
Same here... to both of you.
curious to hear how this works out for you. Hoping for the best.
thank you! venue emailed back - they have ~12 first-come-first-setve ada seats and offered to refund my general admission ticket if i bought a balcony ticket (which costs more). sigh. it’s better than nothing, but not actually in ada compliance.
dang, that’s intense. I’m sorry this is happening. Hopefully this works out. Keep me updated. I’m here for you!
Concerts and live music were my life for a very long time. I've learned that doctors notes can help, as can befriending security if you can. Does leaning help you? I just went to a show and leaned against the wall the whole time lol.
last show i tried leaning on the barrier as the outdoor venue lacked seating. i managed, but it was definitely dicey at the end even though it was a shorter set. this is a new venue to me, so it’d have to be instant friendship with security lol
You may be able to be let in a different door or early so you don't have to do the skipping in front of everyone. Also, I'm now 28 but last concert I went to I was 21 and I took a walker with a seat built in and put on some of my leg braces. Its a shame that we have to but sometimes you can help yourself and others to understand by just being more visible.
I know it’s a big step but using a rollator/walker might be your safest bet. Sometimes bringing some visibility to it isn’t a bad thing and can help you get the necessary accommodations without that unreasonable guilt people put on us for looking healthy but being disabled! A note from a doctor might help too depending on the venue. The important part tho is that you’re safe and able to enjoy yourself at the same time!
thank you, I just don’t have space in my apartment but I will totally have to make space to bring my walker here
if it helps, they make canes with fold-out legs and a seat, might save space if you need it primarily for those long standing-times
I have accommodations at school where I'm allowed to skip in front of lines because I physically can't stand for that long, but I hate doing it because I feel like such an asshole
I make sure to have an extra fold-away cane in my purse or car for situations like this. I use my wheelchair but I can’t move it on my own or get it in/out of vehicles so I only use that when I have another person with me to help. Often I’m not with people I can feel comfortable asking to help me with my large wheelchair so I bring my cane. Having a cane always seems to give people a better impression that I AM disabled, despite being a “conventionally attractive” young-looking female (I’m 30 but because of EDS I look younger).
I gave up on any of that completely. Even sitting upright is not good. Then elevators or stairs are all stoppers too.
Im barely put stores back in my mix. Im very limited to ones that i will visit. Kohls got me last time i tried a driveup pickup. Found out that they cancelled that service without notice. They put lockers at the back of the store. They found out that I'm not afraid to just sit on the floor when i need. Needless, to say, they went and got my order for me.
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