(If reading this post makes you think you need to be worried about me, please read it again. I am just being honest about a possibility that exists for a lot of people.)
Death can feel like gravity. It can feel like you're killing time, but not waiting for anything. I've been going a long time without the Suicide Suck and it's a really nice feeling.
Maybe it's easier to blame something. Maybe it's easier to blame myself. The truth is I guess both things. I have a tender belly. I guess it's possible I got this way from too frequent wounding when I was a kid, that instead of toughening up I ended up constantly hanging on strings, but I might just have been born tender. The social justice movement to help me would just involve encouraging people to protect the tender-bellied among them. There's no obvious injustice that has caused every Suicide Suck of my life, but that doesn't mean that each one isn't a response to my environment.
It's weird because even though it appears for specific reasons, the reasons are different every time. The Suck is actually faceless, but it always looks like something. It's only lately that I realized there was only one lion, or rather, anti-lion.
Oh Suicide Suck. Maybe you will be the death of me, and it's weird to be thinking this in a completely Suck-free zone, at least a month's insulation between now and the last time I was in one. I feel so good. I mean plenty of the time I feel tired or angry, but normal-style, not the Suck, which is this kind of raging tearfulness bubbling up behind my eyes and advising me how to get rid of it.
But it will be back and I guess one time might be the last time and that's not so bad. We all have to go somehow and if my way is that way it doesn't negate everything that came before. After all fighting to live is a different kind of fight, because you only have to lose once. Adults who commit suicide have often spent years refusing to do so. It makes me mad that successful people who kill themselves end up being defined by killing themselves instead of the fact that they were able to become successful while wanting to kill themselves. If I ever get Sucked I want people to know that I had a chronic illness that was part of my personality but that the last minute of my life wasn't who I am.
20 May, 2012
03 May, 2012
Sorry to just write about my job. But I have to admit I don’t have time to think about being disabled, but I am the enemy and I guess writing about my time as the enemy can possibly be educational to others. I feel really screwed as a support worker who wants to do ethical work but also is a non-driver, because the less institutional a setting is, the more likely they are to only hire people who drive. But I am still finding myself thinking that when I move in a few months, I’ll do anything to work somewhere that’s not an institution, I don’t care what it takes.
Caregiver burnout is seriously the weirdest idea I’ve ever heard of, since I’ve never in my life had a staff job where the people I supported (all supposedly “heavy” populations to work with) have actually been difficult. I mean, there has been a very small minority of people who are tough to work with for different reasons, but probably less than in the general population. 99% of stress in my staff jobs has always come from being asked to perform contradictory tasks, or being asked to do things that I think are wrong. The stress always comes from cutting corners and compromising, being afraid that the thing I skipped to get something else done will turn out to be really important, or being guilty because either I did something that I know was wrong, or I did something that someone else might think is wrong. If I’m stressed about something related to the people I support, it is usually because I know I’m starting to see them with less ordinary human compassion. They’re becoming pipes.
But really I just want to tell you about some advice I got the other week.
2
I used to work 8-hour shifts (11 pm to 7 am). I’m really glad I started out that way, because a night shift is definitely the most mellow it ever gets at the place I work. For the last hour or two of the shift you are helping people get dressed and showered, but until then, the job basically consists of helping someone if they wake up and want to go to the bathroom, and doing things like emptying catheter bags which you can do on your own schedule.
Last month I started working 12-hour shifts (7 pm to 7 am) which means that the first four hours of my shift are about ten times busier than I’m used to. If the person who worked 3 pm to 7 pm got a fair amount of work done, I have to put maybe 10 people in bed in 3 or 4 hours, which is fine. Other times I have 14 people, which doesn’t work out for me so well.
Two weeks ago, one of the night nurses showed up for work at 11 and noticed that I still had one resident left to put in bed. The nurse--let’s call her Anna--is a few years older than me and maybe six years ago, before she was a nurse, she worked here as an aide. It was her first job as an aide, just like me.
Anna approached me later that night and said, “I noticed that someone was still up when I got here. You should really have everyone in bed by ten.”
I tried to say that I’ve had trouble putting people to bed fast because I don’t have much experience working with these residents in the daytime and I don’t know what kind of lifts they need, or even things like if they have dentures. I tried to ask for a guideline on how many residents I should put to bed in an hour.
Instead she suggested that I start at the top of the hall and put the residents of the first room to bed first. If I continued in that order, she said, I would be able to get things done faster. She started to do an impression of how she used to talk to residents when she first started working: “‘Hi, I’m Anna, I’ll be your aide tonight. Would you like to go to bed? Well, what time would you like to go to bed? Okay, I’ll come back then.’ And I would be on my hall at 10:30 wondering why everyone else was finished. You have to have a way of doing things and do it in that order.”
“I guess some people will always say they don’t want to go to bed, if you ask them,” I said.
“That’s right. And other people will be sitting in their doors calling, ‘Honey, put me to bed.’ But you have a lot to do, and they understand that. So just get in there and start at the top of the hall and go to the end. I bet by the time I see you next week you’ll be a pro.”
I have my own thoughts about the content of what she was saying, but my main reaction in the moment was that it was nice of Anna to offer me advice, and that she had done a good job presenting that advice in a way that didn’t make me feel like there was something wrong with me. When she came back on the hall later, I thanked her for what she had said.
Now she said, “I know it’s hard, because in your aide class, they tell you to ask everyone what they want. And you’re a sweet person--don’t change that--but you have a lot to do.”
3
Despite all the obviously messed up things about support work it is hard for me to imagine doing a different kind of work, because the people I end up supporting almost always turn out to be really great. Or maybe it’s just the kind of relationship fostered by that work, that I end up seeing the best side of people. Either way it is a job where all the big frustrations end up being totally made up for by mundane details.
The more I like my residents though the more I just wish I was working for them. I want to do what they want, not put them where someone else decided they should be at a certain time. This is such an obvious aspect of institutional settings that I wouldn’t even say it is what this post is about, although if you have not worked or lived in a nursing home, I guess now you know more about it. (This blog explains things a lot better than I could.)
Anyway, what struck me about Anna’s advice isn’t that you’re not really supposed to ask people what they want. I have been learning that since the first day my State Tested Nurse Aide class ventured out of our classroom and into clinicals at a nearby nursing home. At the end of clinicals, my classmates talked while we were filling out the sheet of skills we had practiced--brushing teeth, changing diapers, passing trays. Everyone noticed that unlike our role-plays in class, which we always started by asking the imaginary resident what she wanted, in clinicals we were expected to do as many skills as we could unless the resident actually yelled at us and fought us (and even then we were supposed to give it a good try.)
The thing is though that when my classmates noticed this, they just thought it was the difference between official standards and the way things work in real life, like it's easier not to lift people in the way that is officially supposed to be better for your back. They weren’t upset that we were supposed to be coercing people into doing things they didn’t want.
This is also what struck me about what Anna said to me. She felt like if I was just exposed to the idea of not asking people what they want, I could just start doing it. She assumed that I was asking people what they wanted because it’s what I had learned in class, or because I was “sweet”--that it was a habit that came with my temperament, like saying please and thank you. It didn’t occur to her that I might be making an informed choice because I thought it was the right thing to do.
I didn’t finish How Indistinguishability Got Its Groove Back and I don’t know if I will. But this kind of ties into it. Basically I feel that most people who work with vulnerable populations, and/or people with disabilities, don’t seem to come into their job with a sense of ethics or power dynamics or the potential for abuse, and no one works to instill it in them. This doesn’t mean that most people in these jobs are awful people or that they commit a lot of abuse, but I think that there would be a lot less abuse and people with disabilities would have better lives if someone just thought these ideas were important.
Caregiver burnout is seriously the weirdest idea I’ve ever heard of, since I’ve never in my life had a staff job where the people I supported (all supposedly “heavy” populations to work with) have actually been difficult. I mean, there has been a very small minority of people who are tough to work with for different reasons, but probably less than in the general population. 99% of stress in my staff jobs has always come from being asked to perform contradictory tasks, or being asked to do things that I think are wrong. The stress always comes from cutting corners and compromising, being afraid that the thing I skipped to get something else done will turn out to be really important, or being guilty because either I did something that I know was wrong, or I did something that someone else might think is wrong. If I’m stressed about something related to the people I support, it is usually because I know I’m starting to see them with less ordinary human compassion. They’re becoming pipes.
But really I just want to tell you about some advice I got the other week.
2
I used to work 8-hour shifts (11 pm to 7 am). I’m really glad I started out that way, because a night shift is definitely the most mellow it ever gets at the place I work. For the last hour or two of the shift you are helping people get dressed and showered, but until then, the job basically consists of helping someone if they wake up and want to go to the bathroom, and doing things like emptying catheter bags which you can do on your own schedule.
Last month I started working 12-hour shifts (7 pm to 7 am) which means that the first four hours of my shift are about ten times busier than I’m used to. If the person who worked 3 pm to 7 pm got a fair amount of work done, I have to put maybe 10 people in bed in 3 or 4 hours, which is fine. Other times I have 14 people, which doesn’t work out for me so well.
Two weeks ago, one of the night nurses showed up for work at 11 and noticed that I still had one resident left to put in bed. The nurse--let’s call her Anna--is a few years older than me and maybe six years ago, before she was a nurse, she worked here as an aide. It was her first job as an aide, just like me.
Anna approached me later that night and said, “I noticed that someone was still up when I got here. You should really have everyone in bed by ten.”
I tried to say that I’ve had trouble putting people to bed fast because I don’t have much experience working with these residents in the daytime and I don’t know what kind of lifts they need, or even things like if they have dentures. I tried to ask for a guideline on how many residents I should put to bed in an hour.
Instead she suggested that I start at the top of the hall and put the residents of the first room to bed first. If I continued in that order, she said, I would be able to get things done faster. She started to do an impression of how she used to talk to residents when she first started working: “‘Hi, I’m Anna, I’ll be your aide tonight. Would you like to go to bed? Well, what time would you like to go to bed? Okay, I’ll come back then.’ And I would be on my hall at 10:30 wondering why everyone else was finished. You have to have a way of doing things and do it in that order.”
“I guess some people will always say they don’t want to go to bed, if you ask them,” I said.
“That’s right. And other people will be sitting in their doors calling, ‘Honey, put me to bed.’ But you have a lot to do, and they understand that. So just get in there and start at the top of the hall and go to the end. I bet by the time I see you next week you’ll be a pro.”
I have my own thoughts about the content of what she was saying, but my main reaction in the moment was that it was nice of Anna to offer me advice, and that she had done a good job presenting that advice in a way that didn’t make me feel like there was something wrong with me. When she came back on the hall later, I thanked her for what she had said.
Now she said, “I know it’s hard, because in your aide class, they tell you to ask everyone what they want. And you’re a sweet person--don’t change that--but you have a lot to do.”
3
Despite all the obviously messed up things about support work it is hard for me to imagine doing a different kind of work, because the people I end up supporting almost always turn out to be really great. Or maybe it’s just the kind of relationship fostered by that work, that I end up seeing the best side of people. Either way it is a job where all the big frustrations end up being totally made up for by mundane details.
The more I like my residents though the more I just wish I was working for them. I want to do what they want, not put them where someone else decided they should be at a certain time. This is such an obvious aspect of institutional settings that I wouldn’t even say it is what this post is about, although if you have not worked or lived in a nursing home, I guess now you know more about it. (This blog explains things a lot better than I could.)
Anyway, what struck me about Anna’s advice isn’t that you’re not really supposed to ask people what they want. I have been learning that since the first day my State Tested Nurse Aide class ventured out of our classroom and into clinicals at a nearby nursing home. At the end of clinicals, my classmates talked while we were filling out the sheet of skills we had practiced--brushing teeth, changing diapers, passing trays. Everyone noticed that unlike our role-plays in class, which we always started by asking the imaginary resident what she wanted, in clinicals we were expected to do as many skills as we could unless the resident actually yelled at us and fought us (and even then we were supposed to give it a good try.)
The thing is though that when my classmates noticed this, they just thought it was the difference between official standards and the way things work in real life, like it's easier not to lift people in the way that is officially supposed to be better for your back. They weren’t upset that we were supposed to be coercing people into doing things they didn’t want.
This is also what struck me about what Anna said to me. She felt like if I was just exposed to the idea of not asking people what they want, I could just start doing it. She assumed that I was asking people what they wanted because it’s what I had learned in class, or because I was “sweet”--that it was a habit that came with my temperament, like saying please and thank you. It didn’t occur to her that I might be making an informed choice because I thought it was the right thing to do.
I didn’t finish How Indistinguishability Got Its Groove Back and I don’t know if I will. But this kind of ties into it. Basically I feel that most people who work with vulnerable populations, and/or people with disabilities, don’t seem to come into their job with a sense of ethics or power dynamics or the potential for abuse, and no one works to instill it in them. This doesn’t mean that most people in these jobs are awful people or that they commit a lot of abuse, but I think that there would be a lot less abuse and people with disabilities would have better lives if someone just thought these ideas were important.
02 May, 2012
slow
This is a little boring but it does remind me of the overused simile where you feel like you are plunged into ice water. I was at work around midnight, with a resident I really like. Actually the first time I met her I sneakily teared up because she shares a name with my dead grandma, who I remember as a bastion of hyperfemininity and unconditional love. She also just reminded me of her even though she's more snarky. She has a drawling way of talking and moving which you could probably diagnose or not but I think of it as a style. She is always interesting to talk to and encourages me when the steady lift refuses to roll over her oxygen tubes or the cord for the bed remote.
After we got back from the bathroom and I ran over the tubes and cords, I picked her legs up and put them in bed. I aspire to someday do this in a way that doesn't hurt her bad leg, but if there is a way, I haven't learned it yet.
Her: Oh my God.
Me: I'm sorry!
Her: No, I'm sorry...for having feet.
Me: You're sorry for having feet?
Her: For having big feet.
Me: I'd be more sorry if you didn't have feet.
Her: Oh, God. That's one blessing I have.
(At this point I was expecting a joke about being blessed with big feet.)
"All the children were normal," she said. I sort of froze and, after a characteristic pause, she continued, "All the money and time that goes toward an invalid..."
I don't think I said anything else before I left. Maybe I said, "Yeah, well," which is the best response because maybe it leaves room for everything I could want to say. Anyway I had the ice bucket feeling.
At three she put on her light to go the bathroom. I actually felt nervous about what it would be like to talk to her, someone I had always looked forward to talking to before. Once I got her in the bathroom I crouched on the floor because my legs had hit the feeling where they feel like some other appendage that I'm using as legs by mistake. I closed my eyes but weirdly I almost felt afraid of doing this in front of her now as if I didn't want her to see my weakness.
She asked how I could sit like that so early in the morning; she didn't think she could. She had dreamed she went hiking with her daughter in Big Sur, where she has never been. After a while I wondered if she had fallen asleep in the bathroom and if I should try and wake her up.
"How is the bathroom stuff going?" I asked. She couldn't understand me the first time (this is not because she is old; I'm not the best conversation partner for anyone who has the mildest hearing or processing problems in the world). When she understood the question she thought about it and said, "Slow...like me," with a crooked smile. I realized one of the things I most admire about her is the grace of her slowness.
After we got back from the bathroom and I ran over the tubes and cords, I picked her legs up and put them in bed. I aspire to someday do this in a way that doesn't hurt her bad leg, but if there is a way, I haven't learned it yet.
Her: Oh my God.
Me: I'm sorry!
Her: No, I'm sorry...for having feet.
Me: You're sorry for having feet?
Her: For having big feet.
Me: I'd be more sorry if you didn't have feet.
Her: Oh, God. That's one blessing I have.
(At this point I was expecting a joke about being blessed with big feet.)
"All the children were normal," she said. I sort of froze and, after a characteristic pause, she continued, "All the money and time that goes toward an invalid..."
I don't think I said anything else before I left. Maybe I said, "Yeah, well," which is the best response because maybe it leaves room for everything I could want to say. Anyway I had the ice bucket feeling.
At three she put on her light to go the bathroom. I actually felt nervous about what it would be like to talk to her, someone I had always looked forward to talking to before. Once I got her in the bathroom I crouched on the floor because my legs had hit the feeling where they feel like some other appendage that I'm using as legs by mistake. I closed my eyes but weirdly I almost felt afraid of doing this in front of her now as if I didn't want her to see my weakness.
She asked how I could sit like that so early in the morning; she didn't think she could. She had dreamed she went hiking with her daughter in Big Sur, where she has never been. After a while I wondered if she had fallen asleep in the bathroom and if I should try and wake her up.
"How is the bathroom stuff going?" I asked. She couldn't understand me the first time (this is not because she is old; I'm not the best conversation partner for anyone who has the mildest hearing or processing problems in the world). When she understood the question she thought about it and said, "Slow...like me," with a crooked smile. I realized one of the things I most admire about her is the grace of her slowness.
10 April, 2012
Someone was telling me it's really hard to comment here unless you have a google account. I think I have it set on "account users including open ID" but it obviously hasn't worked out that way so I changed it so people can comment anonymously. I don't know if there is a crowd of anonymous people frothing to comment on this mostly abandoned blog or if I've just opened my heart to a world of spam, but this should be interesting.
01 April, 2012
I'm Spasticus Autisticus
I am a big, big lover of this song and I was going to just post it on Facebook as my reasonably uninvolved observance of Autism Acceptance Day. But I happened to find an interview with Ian Dury about the song, which disappointedly ended with him sort of apologizing for mentioning autism and saying it's probably "frightening" for parents. I never thought a dead guy could stomp on my heart so hard, but it was the 80s and there wasn't even what there is now in terms of Autistic-identified people who could have told him not to apologize. So I forgive you Ian Dury, like I could ever be mad at you for long.
The main thing about the interview was that he confirmed my gut interpretation of the song, which is what I really want to talk about here.
"On the single bag there's what's supposed to be an explanatory note, which is about my tribe being...knowing our racial creed and paying no heed to such things...it can be rich or poor, disablement can get anybody. It was really about Spasticus being a slave who wished to be free, and I put at the bottom 'We too are determined to be free.' And it's based on--the idea of Spasticus is based on a film called Spartacus which had Kirk Douglas in it, and at the end bit, they say 'Which one of you is Spartacus,' you know--'I'm Spartacus,' then they all go 'I'm Spartacus,' and they hung everybody that confessed."
I've been moving away a lot from identifying as Autistic, and probably not for good reasons, but just because I know professionals are on a mission to take it away from as many people as they can and it's hard for me to want to hold onto it when every time I tell anyone I have autism they seem determined to interrogate and confound the reality of my disabled life. So I've retreated into just being slow and crazy, which are words that are available for all people at no charge; or if I'm feeling a little more political I use old words like feebleminded or very new words like headcrip--again none of these words are technical terms, and aesthetically and emotionally that's a big part of their appeal.
But this worries me the same way the word queer has sometimes worried me. The problem with only identifying with something vaguely and choosing the word for your identity aesthetically is that there's strength in community, identity, and numbers, and if everyone is called something else it's hard to find and hold onto each other, to support each other and try and work together for the things that will benefit people like us.
I have always thought that one of the worst disadvantages disabled people face is how few disabled people there are. Don't get me wrong, there are shitloads of wheelchair users, people with LDs and DDs and MH conditions, D/deaf and blind people and HOH people and people with low vision, people who use crutches and canes, people who don't use anything but have to live differently because they live with chronic illnesses, and, you know, you know a lot of people like this and you can think of all the kinds of "people like this" I have neglected to mention.
But that's all we mostly are--people like this.
I've said there are two kinds of disability and you end up fighting yourself with either one. A person is stigmatized as disabled, seen as unworthy of the things he wants from life, and has to prove himself non-disabled in order to be his own person, no matter how much he may harm himself in the process by doing things he can't do. Or a person isn't considered disabled and has to do things she can't do because everyone expects her to do them and there is no support. It's a trap either way.
Both ways a disabled person is fighting not to be disabled. The second person might have a nostalgia for the stigmas and stereotypes of "visible" disability, because it seems better than getting no support or recognition, but ultimately she feels too guilty to try and get those things. Holy shit I'm tired. What I'm trying to say is, what do disabled people think about themselves?
Basically: they do not think they are disabled.
They either think of it as something they have "overcome" or "risen above" with their accomplishments or just their personality, or they think of it as something nasty and rude to mention, or they think of it as something they don't deserve to claim because their disability isn't real or isn't that bad, or they think of it as a word that, if they used it about themselves, would indicate that they're sad, that they're giving up.
This has real practical effects on "people like us," this nameless population. We're so fucking short on disabled writers, disabled scholars, disabled teachers, disabled staff, disabled activists, disabled doctors (imagine the DSM being written primarily by doctors with mental disabilities)--we're so fucking short on people who have an identity and loyalty to other disabled people. Because we all think the word disabled is bad for us! We all throw it away and when we do that, we have nothing because we only have ourself and whatever word we have for ourself--not disabled, just different; not disabled, just has trouble walking; just crazy, just stupid, just slow--just perfectly individual and unique and alone. But our people need armies and bodies of work.
If I was going to start one organization to help disabled people, its focus would be to help kids with disabilities meet adults who identify as disabled. I've thought this for a year or two and I don't think I have the skillset for that kind of thing but it does pull on me sometimes, because it's not that people like us aren't talented and tender and brave, but that we all hang separately.
Anyway. I'm Spasticus Autisticus, is what I'm trying to say.
14 March, 2012
Hospice
Say it with me, I work in a nursing home. And while I don't consider nursing homes for old people to be the same as institutions for young PWDs (there is a big difference between going into a setting like this at the end of your life, and doing so as a young person often at the cost of pursuing the things that most people your age get to pursue), I do think I am learning about institutions and why they just aren't the best thing for anyone--at least not with staff ratios that are so badly suited for people's support needs.
This is obvious, but institutions create "behaviors." They create people who are demanding or mean or angry. A person who likes to go to the bathroom frequently isn't a bad person if they can go to the bathroom independently or if they have an aide at their house whose job is to take them to the bathroom whenever they want. But if the person shares an aide with 20 other people, she becomes "the person who always wants to go the bathroom and doesn't even fucking do anything in there" because of the effect that her quite innocent and harmless personality has on an already overwhelmed aide.
And the big thing is, some people don't want to sleep at night. They want to get up. They want help getting up and going somewhere. I clearly cannot provide this help. They get mad. I start thinking to myself, "why won't they just chill out and watch TV in bed," when the person wants something totally normal that I would probably be asking for sometimes if I lived in a nursing home.
There are various ways of dealing with this situation, but recently I was introduced to the idea of pretending that someone is about to die so they can get hospice services. This means that the nearby hospital associated with us will send an aide just for that resident, to stay with them and do everything they want. I guess when you're about to die you deserve to have all your whims followed even when you have support needs, whereas other people with support needs just have to suck it up and take what help people have time to give them.
I'm not saying this is exactly a lie since we probably do have to convince people that the person could die in 6 months. But it's not like this happens to everyone who might theoretically die in 6 months, because some people don't care or wouldn't get that much out of having their own aide. It happens to people who need/want way more support than we can give them. They are the people who are suddenly like, "you guys he's about to die, he needs to be on hospice!"
This is probably not that interesting but I just thought it was kind of a funny and not very subtle way of dealing with shortcomings of institutions.
This is obvious, but institutions create "behaviors." They create people who are demanding or mean or angry. A person who likes to go to the bathroom frequently isn't a bad person if they can go to the bathroom independently or if they have an aide at their house whose job is to take them to the bathroom whenever they want. But if the person shares an aide with 20 other people, she becomes "the person who always wants to go the bathroom and doesn't even fucking do anything in there" because of the effect that her quite innocent and harmless personality has on an already overwhelmed aide.
And the big thing is, some people don't want to sleep at night. They want to get up. They want help getting up and going somewhere. I clearly cannot provide this help. They get mad. I start thinking to myself, "why won't they just chill out and watch TV in bed," when the person wants something totally normal that I would probably be asking for sometimes if I lived in a nursing home.
There are various ways of dealing with this situation, but recently I was introduced to the idea of pretending that someone is about to die so they can get hospice services. This means that the nearby hospital associated with us will send an aide just for that resident, to stay with them and do everything they want. I guess when you're about to die you deserve to have all your whims followed even when you have support needs, whereas other people with support needs just have to suck it up and take what help people have time to give them.
I'm not saying this is exactly a lie since we probably do have to convince people that the person could die in 6 months. But it's not like this happens to everyone who might theoretically die in 6 months, because some people don't care or wouldn't get that much out of having their own aide. It happens to people who need/want way more support than we can give them. They are the people who are suddenly like, "you guys he's about to die, he needs to be on hospice!"
This is probably not that interesting but I just thought it was kind of a funny and not very subtle way of dealing with shortcomings of institutions.
09 March, 2012
I was going to try and write about this coherently and explain the specific reasons why my disability prevents me from driving but maybe I will do that another time. For now here is a cross-post from tumblr.
hate the assumption that everyone drives
I seriously see people argue that everyone drives/has to drive. um if you couldn’t drive because you would DIE, you would learn that there are other ways of getting around, but not only do they blow, other people constantly ignore or forget that you don’t drive! while I was trying to explain this situation to the scheduling person at my work, I tried to explain that it takes me FOUR HOURS to get to and from work, and she made a little wince face. yeah, sit on the bus for four hours a day and see if all you can say about that is a little wince face.
so here’s the deal, help me out here because I feel like these kind of rules aren’t always set in stone if you actually have a good reason, but like…I’m a supercrip mongoose and there’s nothing I’m worse at than explaining I’m in extreme circumstances. I’m probably going to write a letter and then it’s going to be like “oh just talk to her why did you write a letter lol” (I actually tried to write a letter originally but I got redirected to talking and the little wince face, yeah, NOT HAPPENING AGAIN)
if you have talked to me about my job you might have gotten the impression I hate it. I actually love my job, I have the same job as Hodor. let me rephrase—I love my job WHEN I’M AT WORK.
don’t love that I get paid to work 40 hours a week, but spend 20 more hours riding the bus, for a grand total of SIXTY HOURS. don’t love being home for only 12 hours in between two work nights—go to bed! sleep! wake up! eat and veg out for an hour, feed the mysterious homeless cat, get dressed, go back to work! if you are wondering how I manage showers I would advise you not to come too close to me.
if you talk to me at night when I am about to go to work, you would never get the impression that I love my job, because I fucking hate my job when I wake up at night and I can feel my short period of freedom immediately slipping away from me. I don’t hate work but I hate that I have no fucking time.
so, I was considering asking to work 3 12-hour shifts instead of 5 8-hour shifts. I knew some other people did it and it would save me 8 hours on the bus and give me longer periods of free time. but I didn’t really get around to asking because it wasn’t a huge deal and I didn’t want to change my routine so early.
then this thing starts happening where when I walk to work at night men follow me and stuff. one time this happens when I leave work to go to walgreens at 3 am, and this time other staff notice it because the guy drives into the parking lot to look for me and then drives away when security comes out.
so that morning 2 nurses from the day shift made me go sit in a room with them and gave me a talk about DON’T LEAVE THE PREMISES AT NIGHT, which I swear to God began, “Aw, did you think you were in trouble? Don’t worry, this is for your own good.” I don’t know how much more annoying they would be if they knew I have a disability, but when people don’t consciously know I am disabled they subconsciously perceive that I am 11. in this case, an 11-year-old who’s asking for it!
but stuff also happens to me when I am just walking to work, from the bus, when I have no choice! staff have also concern-trolled when they see me walking to work from the bus stop. “THIS ISN’T A SAFE NEIGHBORHOOD.” oh yeah you think?
anyway after the adventure with the guy in the parking lot, I’ve finally decided fuck this I want to start working 3 12-hour shifts and getting to work WHEN IT IS STILL LIGHT OUT PLEASE.
so…then they told me that only people who work on the independent living floor can have 12-hour shifts and people who work in LTC can only have 8-hour shifts. even though aides who technically work on the independent living floor get assigned to work in LTC all the time. that’s how I met so many people who have 12-hour shifts! so it’s clearly like, a policy/way of doing things and not the way things have to be.
God help me, the first thing I said was, “Oh, well can I work 16-hour shifts then?” and she was like “I’ll get back to you about that next week” and…yeah, fuck me, I would do it if they let me, but I’m still worried.
I was obviously totally unsuccessful at pulling at the heartstrings and explaining how extreme this situation is. I’m not crazy, right? this isn’t just me whimsically asking to work 12-hour shifts because I like the number 12. but…there I was bleating, “but my bus ride is 4 hours” and not hitting on the important ideas like, “MEN FOLLOWING ME IN CARS.”
so I’m probably going to write a letter, but yeah, advice is appreciated because the current form of the letter is pretty angry.
hate the assumption that everyone drives
I seriously see people argue that everyone drives/has to drive. um if you couldn’t drive because you would DIE, you would learn that there are other ways of getting around, but not only do they blow, other people constantly ignore or forget that you don’t drive! while I was trying to explain this situation to the scheduling person at my work, I tried to explain that it takes me FOUR HOURS to get to and from work, and she made a little wince face. yeah, sit on the bus for four hours a day and see if all you can say about that is a little wince face.
so here’s the deal, help me out here because I feel like these kind of rules aren’t always set in stone if you actually have a good reason, but like…I’m a supercrip mongoose and there’s nothing I’m worse at than explaining I’m in extreme circumstances. I’m probably going to write a letter and then it’s going to be like “oh just talk to her why did you write a letter lol” (I actually tried to write a letter originally but I got redirected to talking and the little wince face, yeah, NOT HAPPENING AGAIN)
if you have talked to me about my job you might have gotten the impression I hate it. I actually love my job, I have the same job as Hodor. let me rephrase—I love my job WHEN I’M AT WORK.
don’t love that I get paid to work 40 hours a week, but spend 20 more hours riding the bus, for a grand total of SIXTY HOURS. don’t love being home for only 12 hours in between two work nights—go to bed! sleep! wake up! eat and veg out for an hour, feed the mysterious homeless cat, get dressed, go back to work! if you are wondering how I manage showers I would advise you not to come too close to me.
if you talk to me at night when I am about to go to work, you would never get the impression that I love my job, because I fucking hate my job when I wake up at night and I can feel my short period of freedom immediately slipping away from me. I don’t hate work but I hate that I have no fucking time.
so, I was considering asking to work 3 12-hour shifts instead of 5 8-hour shifts. I knew some other people did it and it would save me 8 hours on the bus and give me longer periods of free time. but I didn’t really get around to asking because it wasn’t a huge deal and I didn’t want to change my routine so early.
then this thing starts happening where when I walk to work at night men follow me and stuff. one time this happens when I leave work to go to walgreens at 3 am, and this time other staff notice it because the guy drives into the parking lot to look for me and then drives away when security comes out.
so that morning 2 nurses from the day shift made me go sit in a room with them and gave me a talk about DON’T LEAVE THE PREMISES AT NIGHT, which I swear to God began, “Aw, did you think you were in trouble? Don’t worry, this is for your own good.” I don’t know how much more annoying they would be if they knew I have a disability, but when people don’t consciously know I am disabled they subconsciously perceive that I am 11. in this case, an 11-year-old who’s asking for it!
but stuff also happens to me when I am just walking to work, from the bus, when I have no choice! staff have also concern-trolled when they see me walking to work from the bus stop. “THIS ISN’T A SAFE NEIGHBORHOOD.” oh yeah you think?
anyway after the adventure with the guy in the parking lot, I’ve finally decided fuck this I want to start working 3 12-hour shifts and getting to work WHEN IT IS STILL LIGHT OUT PLEASE.
so…then they told me that only people who work on the independent living floor can have 12-hour shifts and people who work in LTC can only have 8-hour shifts. even though aides who technically work on the independent living floor get assigned to work in LTC all the time. that’s how I met so many people who have 12-hour shifts! so it’s clearly like, a policy/way of doing things and not the way things have to be.
God help me, the first thing I said was, “Oh, well can I work 16-hour shifts then?” and she was like “I’ll get back to you about that next week” and…yeah, fuck me, I would do it if they let me, but I’m still worried.
I was obviously totally unsuccessful at pulling at the heartstrings and explaining how extreme this situation is. I’m not crazy, right? this isn’t just me whimsically asking to work 12-hour shifts because I like the number 12. but…there I was bleating, “but my bus ride is 4 hours” and not hitting on the important ideas like, “MEN FOLLOWING ME IN CARS.”
so I’m probably going to write a letter, but yeah, advice is appreciated because the current form of the letter is pretty angry.
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