This phenomenon makes me SO mad, and it feels SO ableist.

How do you think it feels every time I have to figure out whether it matters that my 10 surgeries don’t fit in the one line you gave me?

Or that my rare genetic conditions don’t fit in that tiny “other” line?

Or checking boxes for symptoms I know you’ll ignore because I deal with chronic illness?

I optimize for large medical systems to minimize paperwork.

#disabilityMastodon #disabilitydon #serviceDesign

https://mstdn.social/@erictopol/110848788295322602

Hi, I’m not sure if #DisabilityMastodon is the same as on the other app. However I’ve been allowed to sell these to fund some urgent repairs to my wheelchair. I’m selling them far cheaper than Rrp. #DisabilityPrideMonth #AmbulatoryWheelchairUsersExist #Ebay #Helpinghand #wheelchairuser #raisingfunds #helpneeded #help https://www.ebay.co.uk/itm/266349856732?mkcid=16&mkevt=1&mkrid=711-127632-2357-0&ssspo=m7eISeblTSe&sssrc=2051273&ssuid=m7eISeblTSe&var=&widget_ver=artemis&media=COPY

Worked on an Excel timeline of events and I’m near 200 lines and we only just landed in Atlanta 🙃 I want to make sure I write my article from the facts. Most lines in the first day are backed up by a timestamp or screenshot in a support text or app. That’s on top of the Tweets. I believe this is what’s commonly referred to as “having the receipts”. #DisabilityMastodon #travel #delta #discrimination

Alexa, play music for bringing a giant airline to account for breaking the law #discrimination #disability #DisabilityMastodon #travel #delta

https://twitter.com/funnygodmother/status/1680747630874460165?s=46&t=k42F6THqZl4XtJYzr7yT4Q

I am sick of being put on a pedestal by people I know, which actively results in them pulling away and providing less support when I need it most. I am sick of the whole “but you’re so strong” argument - I have had no choice, and everyone has their breaking point. Past performance is no indicator of future results, and if you’re failing to acknowledge the current situation you’re objectifying me to make yourself more comfortable. #DisabilityMastodon #WomenInSTEM #gamedev

Important read to boost your data literacy and ability to protect yourself online when seeking mental health care. There are significant gaps in HIPAA that allow companies like BetterHelp to skirt the lines of unethical behavior without significant repercussions. Tons of very sensitive data was shared with Facebook and data brokers at multiple companies. #disabilityMastodon https://www.businessinsider.com/online-therapy-mental-health-apps-betterhelp-talkspace-cerebral-dark-side-2023-4

All this to say it sucks right now in my little bubble AND I can’t imagine how hard it is for the many folks with these conditions who do not have some of these supports. US disability support is a travesty, and there are lots of employers where it’s dangerous or impossible to be open at all. Not to mention the time and emotional drain every day, planning and managing care. I see you. I’m sorry. It sucks. #DisabilityMastodon #LongCOVID

From August 2020 to May 2021, I needed 4 *major* surgeries: reconstruction of my right arm/hand due to debilitating EDS pain, reconstruction of my left arm/hand due to debilitating EDS pain, an emergency appendectomy, and then a toupet fundoplication (reinforcement of the esophegeal joint with the stomach) to treat sudden severe GERD that was starting to risk damage to my vocal cords. I have 28 scars from those 10 months. The timing of all that… was sus. #DisabilityMastodon

This is what I mean when I say I’m disabled. I can’t control when i am able to fully engage with society. There are days when it is not practical or safe for me to leave the home. There are days when I can’t really manage using a computer. I have 6 doctors in LA and I am on many maintenance prescriptions to keep me treading water. The flares are not for lack of trying. The flares are a sign the trying is working, as without the trying it’d be that way *always*. #DisabilityMastodon

I lost so much of my free time this week to disability flares. No one really sees this but my husband, but it is so demoralizing. Sometimes migraines that don’t respond to meds. Sometimes nerve pain when I sit so I have to lie down. Sometimes completely inexplicable 4/10+ abdominal pain that isn’t tied to any specific food. (These aren’t the only types.) ALL THREE of those hit this week separately. Tested negative for COVID twice this week with multiple swabbing sites. #DisabilityMastodon #hEDS

@jeffjarvis So sorry to hear, Jeff. May you and your family be comforted by all the memories you all shared. You are entirely correct: #COVID19 is not over.

#coronavirus #pandemic #CovidIsNotOver #PandemicIsNotOver #disability #disabled #disabilityjustice #disabilityawareness #DisabilityMastodon

ME: hey it hurts to breathe and I don't have COVID

xray: totes normal, BTW surgical clips visualized in abdomen

ME: wut

*furiously looks for 740 page medical history files to see surgical reports*

#DisabilityMastodon

and this is on top of an appointment next week for an ENTIRELY SEPARATE issue, and an appointment 2 weeks from now for a THIRD ENTIRELY SEPARATE genetic condition.

This is why I can't respond to the 100 totally generic requests in my inbox asking to "pick my brain" or "get to know me" about breaking into UX. I barely get time to eat, breathe, work, and sleep on top of all of that. Writing is the only way I can be efficient in helping others. #DisabilityMastodon #uxdesign

Took another series of messages and calls because the specialist referral was booking out in AUGUST and wouldn't even pencil me in. I can't even. I'm booked now (for tomorrow and 2wks from now), but took all morning, while in pain, while balancing my meetings, to get into specialists I was prescribed to see for an emergent issue that a nurse said required ER treatment last night. And this is basically the best case scenario where I could get initial intake within 24 hours. #DisabilityMastodon

NURSE: yeah that’s not a good set of symptoms you should go to urgent care
DOCTOR: yeah agreed super weird you need an ultrasound
ULTRASOUND SCHEDULERS: great, so your appointment is for the middle of June…

What the ACTUAL F. This is why I don’t bother seeking treatment for so much of my chronic pain. Even when it does get taken seriously, the obstacles to diagnosis can be absurd. At that point if there’s something urgently wrong it’ll be too late. #DisabilityMastodon

I want to break the Twitter habit, but many folks I value are still only there. And there’s a weird dynamic where I will wake up in pain and go engage in conversations with other people over there in bulk. I don’t post a lot of unique content over there - usually that comes here - but it still means a lot of posting because I’m in a lot of pain and there’s a lot of spice to be had in #UXDesign. #DisabilityMastodon

Had a lovely "well THAT'S not supposed to be physically possible" symptom scare this morning and I'll be waiting all day to hear from doctor whether it's urgent care or normal appointment territory. Because if I went every day I had pain or symptoms I would be unemployed, and we need to separate signal from noise. Just another day on #disabilitymastodon

This week I had a lot of spicy opinions. I started by trying to share here, but my Mastodon app Tooot kept erroring out when I submitted alt text, blowing everything out. With my disability, ironically, trying to cope with the bug in the accessibility feature became a physical risk so I went back over to Twitter to talk about things.

I have other clients - Ivory, etc - but they have other issues. I really like Mastodon, but this is what #DisabilityMastodon meant about accessibility. #uxdesign

Iconic Jewish disability rights leader Judy Heumann died on Shabbat.

It’s #Purim, the holiday where we laugh because it hurts too much not to.

Let’s honor her memory with disability humor and funny stories.

#Mazeldon #DisabilityMastodon #JudyHeumann

Iconic Jewish disability rights leader Judy Heumann died on Shabbat.

It’s #Purim, the holiday where we laugh because it hurts too much not to.

Let’s honor her memory with disability humor and funny stories.

#Mazeldon #DisabilityMastodon #JudyHeumann