I haven't talked much about what happened to me a few weeks ago, when I was admitted to the local #MentalHealth facility, but I've finally been able to get it all in writing. I'm posting this both as a link and a thread so that people have the choice of reading it in the way that works best for them.
Here's the link: https://docs.google.com/document/d/e/2PACX-1vTdQSmGK_nuw4DMVq1C-j2Qjy4AXoxmFVY8IkI1bdrW84j69AlOqaLxrKgQ6UTOme_wtWK7oJ9IlTNC/pub
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[#]ActuallyAutistic #AuDHD #disabled #Disability #DisabilityJustice #HumanRights #Neurodivergent #Blind #ActuallyAuDHD
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And here's the text:
From Jan. 13 to Jan. 16, 2025, I had the misfortune to experience first-hand the way some mental health facilities work (or don't) with disabled patients. And let me tell you, it's not pretty, especially since I have learned that other places are not nearly this bad.
On the night of Jan. 13, , I became so overwhelmed from autistic burnout that I was ready to give up on life entirely. It got so bad that I called 911 to get picked up for admission to our local psych ward. So from Tue. Jan. 14 at around 1 AM to Jan. 16 at around noon, I was a patient of MercyOne Genesis Behavioral Health. And the staff at the eastern campus where I went to the ER did not bother to tell me there were any other places I could go that would be better. So During my hospitalization, , I was subjected to several violations of my basic human rights. I was denied accessibility tools that I needed for my independence, leaving me with no way of getting around the ward beyond the phone and the nearest TV room, no way of telling the time of day, and no way to read information that was posted on the wall, easily available to everyone else, such that I was dependent on staff to inform me of everything. I could not learn, on my own, when visiting hours even were–my partner had to find this out so that she knew when she could see me. As a result of all this, I actually felt less safe and supported than I should have, and while I did get put on a medication that does seem to be helping, I was actually more on edge, more distraught, and more anxious than at home. While I reported on site that I was still hopeful, it was only because I knew that if I could make it through to Thursday, I would get out of there and would be going home to my beloved partner, Jo. It is only now, 2 weeks later, that I am able to properly put this all in writing.
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It started with the taking of my cane. I was told that I could not keep it with me, and would have to ask someone any time I wanted to go beyond the phone or nearest TV room.
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By the end of Tuesday, I had come to a realization: I had no sense of time. Sure I could tell sunrise and sunset, roughly, with what vision I had, but the only way I knew anything beyond that was if someone told me, and, at least at first, the only time I really knew anything was mealtimes. Others could look up at a clock on the wall at the nurse’s station, but I did not have that option.
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While other patients had the opportunity , at least, of reading a book or magazine to pass the time, the only option open to me for occupying my time was TV. The only change from this was when, escorted by our rec person, we all went into the rec room. I watched as the other patient that had come to rec played Scrabble against the rec director, and then managed to play Rummikub, probably somewhat poorly since I had to squint at the colors.
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When they put me on hydroxyzine to help me with my anxiety, they didn’t bother to tell me, until after I had already come home WITHOUT the bottle of Singulair and was wondering why, that they had actually stopped my Singulair because of possible interactions between it and the Hydroxyzine. This in spite of me asking, several times, why I wasn’t getting it, and what had happened to the bottle I’d brought with me. I was basically told that they’d check into the situation, but the reason was never explained, until Jo called and asked about why they didn’t even give me back my supply. It was only then that I learned about the interaction potential.
Speaking of Jo, the staff did everything in their power to keep her from being able to discuss my needs, even trying to deny me a release of information (ROI) form that would have allowed her to help advocate for me with the staff, they insisted that I didn’t need to have her involved, that I should be able to speak for myself and they didn’t need to talk to her at all. It wasn’t until she was actually there that the staff finally relented and let me sign the form, but we had to push for that, too. And when she was able to speak with them on my behalf, they would relent just enough to get her off their backs, but then basically turned around and kept the status quo. Even the clock Jo brought me was shot down, the “doctor’s order” they claimed they’d need to let me keep the clock never once being produced. The one thing they actually did relent on some was letting me have my Braille display if and ONLY if someone stayed outside my door the whole time I read. So, for all intents and purposes, I was still at the mercy of the staff even for that, and when it came time for room checks and vitals, I had to give up on reading because they were just too busy to bother letting someone watch me.
All of this severely affected Jo’s mental health as well as mine. She barely ate much of anything the whole time I was there, and she slept poorly if at all. On my return, I learned that she had struggled with even basic daily needs. When it was all over, she needed to recover as much as I did.
I am writing this account to raise awareness of the trials faced by disabled patients in places like this, and to speak out against these practices so that hopefully no one else has to go through what I experienced. I was fortunate to have a partner who, to the detriment of her own mental health, stuck by me through my hospitalization, but I know that others might not be as lucky. I suppose the upshot of all this is, I pray there will come a time when this sort of abuse of power and privilege never occurs again.
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