All I can think about right now is May. On the 5th it will be a month since she went inpatient.
This is all so totally beyond unfair. It’s unacceptable! I don’t know how these people one after another can turn their back on her like they’re doing. Not even bothering to meet her to talk to her themselves. Just look at a bunch of paperwork where among all the other things, reasons why she needs this care as much as the next person they bring through the door it says she’s deaf. And it all just stops there. They say no without any regard for the question of what if everyone else does too?
Albany can’t take her back. Not because of the deafness obviously, but the medical condition. discharged in the first place needing a skilled facility that also does psych. The fact that both the hospital and Jonathan had tried to place her, it seems off and on for months with no success should have given Albany staff a clue that they were really throwing her to the wolves in terms of the possibilitys on a home for her. But I guess they really felt they couldn’t manage. And maybe that places would be more reasonable and compassionate considering this person was now stuck inpatient and this is urgent. Apparently not.
I’ve been writing people, disability lawyers. But I don’t know how far I’ll get honestly. I’m used to dealing with human service professionals. Lawyers are all business and they don’t have time to listen to a whole long story. Who knows if they’ll turn their backs too on me, even on other professionals. This is the big problem. It’s one thing for I or another nonprofessional to try to contact a place and say she needs this and they say no. But for seasoned professionals both of them, who have been established in this area for years and have done extensive networking for them to all say no that’s it I just don’t see how people can be ok with that. To go home at the end of the day knowing they left someone stranded rather than do anything at all to even see if they could be of any help. And for what? Some theoretical legal case that probably won’t happen ever? Some health department sanction that like I said would nine times out of ten not happen. They’re so selfish it’s about making themselves look good more than anything else at all.
I’ve heard the longest they’ve kept someone there is four months. It will be one on the fifth. This is killing May emotionally I know. She loves the outdoors all kinds of weather and smoking, never mind the health risks. She can’t stand being stuck inside even on restriction in the building when they’re trying to watch her water intake by keeping her in so she won’t sneak out and drink more water. I’m afraid what she’ll be like when she does come out of there. But I’m more worried about where exactly she’ll go if every place is a closed door. Even the state hospital. Not that I’d want that but it would be a place. I know people just can’t live in the hospital. The fact that the professionals are frustrated and lost is terrible to watch.
I want to take her on a field trip to these places and have her talk to the staff. Well write I guess. I want them to see her sense of humor her patience in showing them a couple signs. Her love for life and the outdoors I want them to see May in all her MaynessThat’s what I did for myself. I wrote on my own behalf to these facilities if you remember. I showed them Sam even with a mental illness. Jonathan said that had he not connected with the person from greenwood, the place that liked me but then met and said no that it wouldn’t have mattered what a persuasive e-mail I would have written.
There’s just no answer. I want so badly for there to be an apartment complex or a beautiful townhouse where people with all kinds of disabilities could live. Could help one another day to day. Could help each other organize services that would come in to help us. So we’d have our own sanctuary and could keep something like this from happening.
This is I believe how the peer support movement for mental health started. A couple of really smart creative women where fed up with how they were being treated in the eighties or whatever. So they came up with a way to help each other, to turn the tables on professionals thinking they could boss around people with mental illness andtold them basically we get to boss you around! That’s how peer support took off. Something needs to happen in this same way, for people with disabilities especially multiple disabilities, psychiatric, sensory, physical and medical/ chronic illness. We need to find a way to stand up for ourselves and show professionals that we’re strong as a community can come up with solutions for ourselves, but absolutely do need their help. It just needs to be more on our terms. More them working alongside us rather than above us making final decisions like this one where someone is emotionally dying and stranded I would want so badly to never happen again.
I want to sit with her. With one hand I make the ILY sign, my favorite the one I learned the easiest and that will always be tattooed on my heart. With the other hand I want to hold hers tightly. Use all my ESP powers that I wish I could really have with Kat to tell her it’s gonna be ok I’ll take care of her. But really I’d just by trying to reassure her with one hand and clinging to her and crying with the other. Much as how I feel with all the people I know or have known stuck in a miserable situation that seems completely hopeless.