When I worked in an institution I was afraid that I secretly liked institutions.
I was afraid that I liked the fact that I had a very specific job, that I would get told off for even trying to plunge a toilet myself instead of calling the person whose job it was to do that. I was afraid I liked all the alarms and call lights that worked in the same way, the small number of kinds of beds where once you knew how to operate a few of them, you knew how to operate them all. I was afraid that I liked every bathroom having the same color washcloth and the same brand of shampoo.
Obviously I am Autistic so on the surface some of this makes sense, but it's also something other than that. I was worried how deep staff infection went and worried that scheduled lives had started to seem normal to me.
I've been working in "home care" for a few weeks now and it's definitely hard for me to have to do stuff other than physical support when I have trouble cooking and cleaning for myself. But it's incredibly worth it.
I don't think I had really thought about the distinctness that a person's own home has. Not just the space but the way they do things, and how their ways and the space interact.
I love messy rooms full of dirty dishes, tables of grandmotherly objects like wind-up Easter rabbits and Christmas trees that are up all year. I love obsessively organized rooms too, with labels on everything. I love getting to work with someone who hasn't been moved across the long term care hall to a different room with a different stranger, but is living in the house where she raised her kids.
I feel very cheesy describing it this way but it does feel like my function is to be part of the machinery that helps someone keep being themselves, and that's really exciting.
09 October, 2012
21 September, 2012
Iceberg problems
I wrote something like this in a Facebook comment a long time ago and I realized I didn't ever write it up here like I was planning to. I've been thinking about it because it applies to a lot of things other than disability, but I'm sticking to disability in my explanation of it.
So from your (universal disabled person's) point of view, there's the stuff other people notice about you that's different or seems to cause problems. Then there's your actual problems, differences, and/or suffering which is going to be most obvious to you and maybe some people who are close to you.
I don't know if I'm explaining this well but just think of an iceberg, where people notice the tip of the iceberg but most of the reality of what the disabled person experiences is underwater. Here is an example about Clayton, hi there Clayton if you ever read this blog. (Aside from this most of the examples are going to be about autism.)
When people meet Clayton they notice that he walks and moves differently. Sometimes they wonder if his physical disability includes an intellectual disability. They find out that it doesn't, and then they think of his disability as consisting of how he walks. Sometimes they even come to feel that the way he walks isn't that different after all and then they "don't even notice his disability anymore" or "don't think of him as disabled."
They don't see fatigue and physical pain that Clayton suffers due to having CP, and he said that some people actually try to argue with him when he explains that his disability is more than the way he walks. This can happen with people he's been friends with for a long time.
It's obvious that people do this when they don't have experience with disability, but the weird thing is that they also do it when they do. It's a major trope in arguments between disabled adults and parents of disabled children that the parents will tell the disabled adults they're not really disabled or they're not really suffering. I don't think this is something that happens because anyone is an asshole. People just get really upset when they think someone is claiming an experience they don't really have and they see it as an insult to people who really do have the experience.
As far as I can tell, this is how it works: people see the underwater part of their family member's disability, and maybe they don't even see how things look to someone who doesn't see that. They don't see how maybe if a stranger meets their family member in the right context, for a short enough time, they don't notice how the family member moves or that they have trouble talking. They know when their family member is about to flip out from stress, so they don't realize that to most people, the person is going to appear calm until they're actually screaming.
If they notice that their family member is really good-looking or sweet or charismatic, they just see that as a coexisting thing or (depending on their attitude toward disability) maybe something that makes the whole situation even sadder. They don't realize that some people are actually going to be much more unlikely to notice signs of the person's disability, or admit the severity of the disability, because they find the person pleasant to be around.
Or, if they notice all of this, they think it's really awful and unfair that people don't understand that their family member is disabled and they wish people could see beyond the surface.
But at the same time, when these people look at disabled people who aren't their family member, especially people who they are inclined to see as other or as their opponents, they don't imagine there is anything beyond the most superficial and loudly stated markers of disability, and they even argue with those. They don't try to learn about what might be happening underwater to make this person identify so strongly as disabled. They don't just give the person the benefit of the doubt and assume there is probably a lot of stuff going on they don't know about.
(Probably my favorite thing was seeing someone argue that her kid is more severely disabled than other people who are perceived to be equally disabled to him, because she knows that he works really hard to appear the way he does.)
Obviously if the point of this post was to criticize parents who attack disabled people this way, I'm beating a really dead horse and my current one post a month output could be channeled in a more creative direction. Everyone knows it is boring and makes disabled people feel really bad.
However I haven't seen a lot of people acknowledge that disabled people do the same thing to other disabled people who they don't agree with. I can think of a few A/autistic bloggers and writers, who don't always have the same opinions about disability as each other, but who obviously feel that they have different opinions from most Autistic people who talk about disability and most Autistic-run organizations. Whether they talk in vague terms or about specific people, these writers usually seem to feel that everyone they associate with "anti-cure" or "neurodiversity" or "anti-ableism" is a homogenous army and none of us are as genuinely disabled as they are.
This is pretty interesting and I've had some conversations with these people where they try to argue that yes okay, maybe everyone can't immediately tell they are disabled from reading their blog, but they still have the right to call out other people and question their right to an opinion because they couldn't immediately tell they were disabled from reading their blog.
Of course this isn't limited solely to people who tend to chew out individuals and organizations that I like. I am a pretty big perpetrator of it myself. I tend to perceive every disabled person I meet as more skilled and/or better off than me in some way related to disability.
1. They are better at doing stuff than me.
2. They have more normal emotions than me.
3. They have a better work ethic than I do (which I guess is a way of just saying they have better executive function and don't ever want to cut their face off from being scared to the point that it is hard to do anything).
4. If it seems like they really are worse at all this stuff than me I just figure that they're probably dealing with it a lot better than I am so they're morally superior to me.
5. Or maybe they're not pushing themselves as hard as I'm pushing myself, that must be nice.
6. They have a disability that other people are going to recognize as being real, like they are in a wheelchair. Therefore they have it better than me because they don't have to feel bad about themselves and everyone understands what they're going through.
This doesn't make me very good at being compassionate towards other people or making friends with them, but you might be interested to know that occasionally people slip through and we become friends, and all of these things are usually NOT true. Most disabled people I've become friends with suck really hard at everything, push themselves really hard, and have a lot of problems that aren't immediately apparent.
Not to be overly broad but even people without disabilities can have underwater stuff. Depending on what someone's problems are (like if they have to do with belonging to a marginalized group) they might have more or less underwater suffering and work and experience going on. But we all have insides and we do ourselves a disservice when we don't work to recognize that.
(Note: I obviously don't think it is objective or even defensible to say that there are really "invisible" parts of a disability that no one can possibly notice without having them or being extremely close to someone who has them. We don't see a lot of signs of disability because we're taught to assume that no one is disabled. But even though I think it sucks, that is how most people function now.)
So from your (universal disabled person's) point of view, there's the stuff other people notice about you that's different or seems to cause problems. Then there's your actual problems, differences, and/or suffering which is going to be most obvious to you and maybe some people who are close to you.
I don't know if I'm explaining this well but just think of an iceberg, where people notice the tip of the iceberg but most of the reality of what the disabled person experiences is underwater. Here is an example about Clayton, hi there Clayton if you ever read this blog. (Aside from this most of the examples are going to be about autism.)
When people meet Clayton they notice that he walks and moves differently. Sometimes they wonder if his physical disability includes an intellectual disability. They find out that it doesn't, and then they think of his disability as consisting of how he walks. Sometimes they even come to feel that the way he walks isn't that different after all and then they "don't even notice his disability anymore" or "don't think of him as disabled."
They don't see fatigue and physical pain that Clayton suffers due to having CP, and he said that some people actually try to argue with him when he explains that his disability is more than the way he walks. This can happen with people he's been friends with for a long time.
It's obvious that people do this when they don't have experience with disability, but the weird thing is that they also do it when they do. It's a major trope in arguments between disabled adults and parents of disabled children that the parents will tell the disabled adults they're not really disabled or they're not really suffering. I don't think this is something that happens because anyone is an asshole. People just get really upset when they think someone is claiming an experience they don't really have and they see it as an insult to people who really do have the experience.
As far as I can tell, this is how it works: people see the underwater part of their family member's disability, and maybe they don't even see how things look to someone who doesn't see that. They don't see how maybe if a stranger meets their family member in the right context, for a short enough time, they don't notice how the family member moves or that they have trouble talking. They know when their family member is about to flip out from stress, so they don't realize that to most people, the person is going to appear calm until they're actually screaming.
If they notice that their family member is really good-looking or sweet or charismatic, they just see that as a coexisting thing or (depending on their attitude toward disability) maybe something that makes the whole situation even sadder. They don't realize that some people are actually going to be much more unlikely to notice signs of the person's disability, or admit the severity of the disability, because they find the person pleasant to be around.
Or, if they notice all of this, they think it's really awful and unfair that people don't understand that their family member is disabled and they wish people could see beyond the surface.
But at the same time, when these people look at disabled people who aren't their family member, especially people who they are inclined to see as other or as their opponents, they don't imagine there is anything beyond the most superficial and loudly stated markers of disability, and they even argue with those. They don't try to learn about what might be happening underwater to make this person identify so strongly as disabled. They don't just give the person the benefit of the doubt and assume there is probably a lot of stuff going on they don't know about.
(Probably my favorite thing was seeing someone argue that her kid is more severely disabled than other people who are perceived to be equally disabled to him, because she knows that he works really hard to appear the way he does.)
Obviously if the point of this post was to criticize parents who attack disabled people this way, I'm beating a really dead horse and my current one post a month output could be channeled in a more creative direction. Everyone knows it is boring and makes disabled people feel really bad.
However I haven't seen a lot of people acknowledge that disabled people do the same thing to other disabled people who they don't agree with. I can think of a few A/autistic bloggers and writers, who don't always have the same opinions about disability as each other, but who obviously feel that they have different opinions from most Autistic people who talk about disability and most Autistic-run organizations. Whether they talk in vague terms or about specific people, these writers usually seem to feel that everyone they associate with "anti-cure" or "neurodiversity" or "anti-ableism" is a homogenous army and none of us are as genuinely disabled as they are.
This is pretty interesting and I've had some conversations with these people where they try to argue that yes okay, maybe everyone can't immediately tell they are disabled from reading their blog, but they still have the right to call out other people and question their right to an opinion because they couldn't immediately tell they were disabled from reading their blog.
Of course this isn't limited solely to people who tend to chew out individuals and organizations that I like. I am a pretty big perpetrator of it myself. I tend to perceive every disabled person I meet as more skilled and/or better off than me in some way related to disability.
1. They are better at doing stuff than me.
2. They have more normal emotions than me.
3. They have a better work ethic than I do (which I guess is a way of just saying they have better executive function and don't ever want to cut their face off from being scared to the point that it is hard to do anything).
4. If it seems like they really are worse at all this stuff than me I just figure that they're probably dealing with it a lot better than I am so they're morally superior to me.
5. Or maybe they're not pushing themselves as hard as I'm pushing myself, that must be nice.
6. They have a disability that other people are going to recognize as being real, like they are in a wheelchair. Therefore they have it better than me because they don't have to feel bad about themselves and everyone understands what they're going through.
This doesn't make me very good at being compassionate towards other people or making friends with them, but you might be interested to know that occasionally people slip through and we become friends, and all of these things are usually NOT true. Most disabled people I've become friends with suck really hard at everything, push themselves really hard, and have a lot of problems that aren't immediately apparent.
Not to be overly broad but even people without disabilities can have underwater stuff. Depending on what someone's problems are (like if they have to do with belonging to a marginalized group) they might have more or less underwater suffering and work and experience going on. But we all have insides and we do ourselves a disservice when we don't work to recognize that.
(Note: I obviously don't think it is objective or even defensible to say that there are really "invisible" parts of a disability that no one can possibly notice without having them or being extremely close to someone who has them. We don't see a lot of signs of disability because we're taught to assume that no one is disabled. But even though I think it sucks, that is how most people function now.)
24 August, 2012
"Would it kill staff to ever show the slightest bit of respect or compassion to their euphemisms?"
This is the opening line to a lot of my mental post drafts but pretty much all of the drafts are just different stories about my adventures working at a nursing home, at which I am going to work for 24 more hours before I move to California, where I am considering working in a gas station, or maybe becoming a professional Pokemon trainer, but most importantly not touching this kind of work with a ten foot pole for the rest of my life.
We'll see how long I can keep that up.
My mom asked me what kind of jobs I was thinking about applying for in California and I didn't know how to explain why I might not want to work as an aide anymore. When the average person hears that you work in a nursing home or with disabled people, their reaction is to think of you as a nice person and, I think, even gentle, which is more important to me. It seems like such a departure for me to explain why my inclination for support work actually feels like one of my worst qualities, and how I feel like if I was a braver, more adaptable, or just more ethical person, I would dive into a completely different line of work and never come back.
I think even a lot of people who would consider themselves fairly "radical" or social justice-y wouldn't understand why I feel like there is a huge push toward unethical behavior in a lot of support jobs. If someone isn't familiar with it it is easy to tell me I'm worrying about nothing and I should just feel proud of what a good person I am for working in a nursing home.
I tried to explain to my mom by telling her something small. People who work on the night shift are assigned to get two or three residents up and dressed by the time we leave, which is about seven. Sometimes we're supposed to shower them too. According to the rules, we're supposed to start get-ups "no earlier than 5:30," but this is one of the rules that no one will care if you break, and in fact it could even be considered a good thing.
If someone has to leave early, they will have their residents dressed by five or six, sitting in the hall in their wheelchairs. Some of the residents quietly push themselves around by their feet, but most of them just sleep sitting up. Some aides will just get their residents that early every day so they can get other work done after. If someone is working a double night shift and day shift, then they might just get all the residents on the hall up starting during the night shift, so they will have more work done early.
This is a decision that no one I work with would ever question, because you are getting your work done by the time it's supposed to be done. The day shift aides would probably even be pleased by a night shift aide doing this, because the person would be able to get more small things done on the hall before they leave. Basically a night shift aide who gets people up really early is seen as a competent worker who organizes their shift in a way that works for them.
You might be wondering what I think is so wrong with getting people up early. I mean I admit that in the grand scheme of things it's not exactly abusive and sleeping in a chair isn't going to kill someone, but to me it really shows how we don't put the comfort of our residents first or focus on what they want. I wouldn't mind if I had to get up and sleep in a chair in my clothes sometimes, but having someone get me out of bed to do this on a regular basis would be pretty annoying, especially if it was because they saw me as a task to get out of the way and not a person to be supported.
Anyway, I basically told my mom that this was something that my coworkers saw as a normal and harmless thing to do and it was an example of why I might not want to be an aide anymore. My mom told me that I was "very kind" but I should think about the practical reasons why people would have to get their residents up early. It is hard for me when people have to tell me I'm "kind" just because I am trying to think from the perspective of people I have a lot of control over, especially because it seems like a lot of people think that part of being competent or just being an adult is thinking about things only from your perspective and the perspective of people who have power over you.
This is the opening line to a lot of my mental post drafts but pretty much all of the drafts are just different stories about my adventures working at a nursing home, at which I am going to work for 24 more hours before I move to California, where I am considering working in a gas station, or maybe becoming a professional Pokemon trainer, but most importantly not touching this kind of work with a ten foot pole for the rest of my life.
We'll see how long I can keep that up.
My mom asked me what kind of jobs I was thinking about applying for in California and I didn't know how to explain why I might not want to work as an aide anymore. When the average person hears that you work in a nursing home or with disabled people, their reaction is to think of you as a nice person and, I think, even gentle, which is more important to me. It seems like such a departure for me to explain why my inclination for support work actually feels like one of my worst qualities, and how I feel like if I was a braver, more adaptable, or just more ethical person, I would dive into a completely different line of work and never come back.
I think even a lot of people who would consider themselves fairly "radical" or social justice-y wouldn't understand why I feel like there is a huge push toward unethical behavior in a lot of support jobs. If someone isn't familiar with it it is easy to tell me I'm worrying about nothing and I should just feel proud of what a good person I am for working in a nursing home.
I tried to explain to my mom by telling her something small. People who work on the night shift are assigned to get two or three residents up and dressed by the time we leave, which is about seven. Sometimes we're supposed to shower them too. According to the rules, we're supposed to start get-ups "no earlier than 5:30," but this is one of the rules that no one will care if you break, and in fact it could even be considered a good thing.
If someone has to leave early, they will have their residents dressed by five or six, sitting in the hall in their wheelchairs. Some of the residents quietly push themselves around by their feet, but most of them just sleep sitting up. Some aides will just get their residents that early every day so they can get other work done after. If someone is working a double night shift and day shift, then they might just get all the residents on the hall up starting during the night shift, so they will have more work done early.
This is a decision that no one I work with would ever question, because you are getting your work done by the time it's supposed to be done. The day shift aides would probably even be pleased by a night shift aide doing this, because the person would be able to get more small things done on the hall before they leave. Basically a night shift aide who gets people up really early is seen as a competent worker who organizes their shift in a way that works for them.
You might be wondering what I think is so wrong with getting people up early. I mean I admit that in the grand scheme of things it's not exactly abusive and sleeping in a chair isn't going to kill someone, but to me it really shows how we don't put the comfort of our residents first or focus on what they want. I wouldn't mind if I had to get up and sleep in a chair in my clothes sometimes, but having someone get me out of bed to do this on a regular basis would be pretty annoying, especially if it was because they saw me as a task to get out of the way and not a person to be supported.
Anyway, I basically told my mom that this was something that my coworkers saw as a normal and harmless thing to do and it was an example of why I might not want to be an aide anymore. My mom told me that I was "very kind" but I should think about the practical reasons why people would have to get their residents up early. It is hard for me when people have to tell me I'm "kind" just because I am trying to think from the perspective of people I have a lot of control over, especially because it seems like a lot of people think that part of being competent or just being an adult is thinking about things only from your perspective and the perspective of people who have power over you.
01 July, 2012
to him it was a joy until he ran out into the warm air
About a month ago my mom was here and she said something about wondering if she and my dad had been too hard on me when I was growing up. We were talking about our respective MH stuff and I had mentioned I was probably more likely to kill myself than be unemployed.
If I wasn't like that though I would probably be unemployed. Do I ever want to quit my job. Not for all the ethical reasons. Just the working 3 12-hour shifts in a row with a 4-hour commute and 5 or 6 hours of sleep in between and eating one or two real meals in the whole stretch. I'm very able bodied but I still hate my body for its soreness and slowness and tiredness, my headaches, and I hate my brain for starting off slow even with enough sleep.
Sometimes I have had gaps in my memory a little bit and Clayton says if you don't sleep this will happen and you won't even know.
One of my best friends, who I know doesn't read this blog anymore so I can say this, is someone who I've consistently encouraged and cheerleaded in getting a job. Now they have a job and they are miserable. They live in fear of losing their job and they can't cope with that fear and working a normal amount of time makes them exhausted.
I'm tired too but what I am learning about myself is I can just keep going and going, everything just goes underneath something else. When I think about myself a year ago being all depressed about school and sleeping ten hours a day and eating I want to punch myself in the face. I'd give anything to be sleeping, I'd give anything to be someone who complains about having had less than eight hours of sleep. I'd give anything to be able to sleep without waking up scared. During the weekend I live from cigarette to cigarette and for Athena smiles and that's about it.
You know how I tend to put disabled people into two categories. Supercrips and not. All my friends hate it. It usually makes them feel bad no matter which one they are.
We're not so different, you and I. We all have no choices. If I wasn't more likely to kill myself than be unemployed, I just would be unemployed, and that would be a different thing to live through.
We're always going to be valued for our ability to work as much as an imaginary non-disabled person who even people without disabilities are killing themselves trying to become, especially poor people. Employment, or even just volunteer work (which sounds inspiring but doesn't help you get food or a place to live) is set up as this glamorous and touchy-feely goal for disabled people. It will give us a feeling of purpose.
I'm here to tell you there is no dignity in work. Work does not give life value. Disabled people who don't work don't have wasted lives--just very scary, miserable ones, because the world wants it that way.
If I wasn't like that though I would probably be unemployed. Do I ever want to quit my job. Not for all the ethical reasons. Just the working 3 12-hour shifts in a row with a 4-hour commute and 5 or 6 hours of sleep in between and eating one or two real meals in the whole stretch. I'm very able bodied but I still hate my body for its soreness and slowness and tiredness, my headaches, and I hate my brain for starting off slow even with enough sleep.
Sometimes I have had gaps in my memory a little bit and Clayton says if you don't sleep this will happen and you won't even know.
One of my best friends, who I know doesn't read this blog anymore so I can say this, is someone who I've consistently encouraged and cheerleaded in getting a job. Now they have a job and they are miserable. They live in fear of losing their job and they can't cope with that fear and working a normal amount of time makes them exhausted.
I'm tired too but what I am learning about myself is I can just keep going and going, everything just goes underneath something else. When I think about myself a year ago being all depressed about school and sleeping ten hours a day and eating I want to punch myself in the face. I'd give anything to be sleeping, I'd give anything to be someone who complains about having had less than eight hours of sleep. I'd give anything to be able to sleep without waking up scared. During the weekend I live from cigarette to cigarette and for Athena smiles and that's about it.
You know how I tend to put disabled people into two categories. Supercrips and not. All my friends hate it. It usually makes them feel bad no matter which one they are.
We're not so different, you and I. We all have no choices. If I wasn't more likely to kill myself than be unemployed, I just would be unemployed, and that would be a different thing to live through.
We're always going to be valued for our ability to work as much as an imaginary non-disabled person who even people without disabilities are killing themselves trying to become, especially poor people. Employment, or even just volunteer work (which sounds inspiring but doesn't help you get food or a place to live) is set up as this glamorous and touchy-feely goal for disabled people. It will give us a feeling of purpose.
I'm here to tell you there is no dignity in work. Work does not give life value. Disabled people who don't work don't have wasted lives--just very scary, miserable ones, because the world wants it that way.
29 June, 2012
hcbs
Writing this in a rush because I’m trying to get myself fed and watered before work, but this is really important and the deadline for public comment is Monday so if you could link it and write in if you have experience/knowledge with these issues, it would be pretty helpful to disabled people who are on Medicaid.
Medicaid Program: state plan for home and community-based services (click “Comment Now!” to share your feelings)
The Administration on Intellectual and Developmental Disabilities wrote an explanation of the situation that is a little easier to understand and here is a PDF about it that is written for disabled people.
This is me trying to explain it and almost dislocating my brain, have fun with this:
The long-term plan is that disabled people who might otherwise end up living in institutions because of their support needs will get “home and community-based services” (HCBS) instead, which means not living in an institution. This is actually less expensive to the government and obviously it leads to a better life for people with disabilities.
However some disabled people feel that the definition of “home and community-based services” needs to be more strict because otherwise, providers could make disabled people live in settings that are basically institutional settings disguised as something else. States get a financial reward from the government for moving people out of institutions and into the community, so there is a motivation to cut corners and try to categorize things as “HCBS” when they really are more of the same old thing.
For example, redistributing the residents and staff of a large institution into a bunch of houses and continuing to run everything the same way as before is not “moving those people into the community.” They are still in an institution, even if you call those houses “group homes” or “shared apartments.” There are also other ways to disguise an institution as HCBS or make HCBS into an institution.
As the Autistic Self Advocacy Network points out in their public comment on defining HCBS (which I highly recommend), denying someone housing unless they agree to receive certain services is something that makes a housing setting institutional. If someone doesn’t have a choice about what services they receive and they could get kicked out of their housing if they say no to certain services, then they obviously aren’t being supported to live independently, they are being threatened into compliance. ASAN also suggests that providers should not have the right to break rules about what HCBS is, just because they argue it is in the best interest of a particular disabled person. There should be some rules that can’t be broken, so that a disabled person’s supposed needs can’t be invoked to take away their freedoms (for example, the freedom to lock their door, have friends over, or decorate their living space).
I admit that I find policy stuff almost impossible to read and I’m guessing that is even more the case for the average person who has direct experience with institutionalization. But if you really think about this, it isn’t as complicated as it seems, and they really want to hear from disabled people. You should write in if you have something to say about how home and community-based settings should be defined, especially if you can write from your experiences or the experiences of disabled people you know.
Medicaid Program: state plan for home and community-based services (click “Comment Now!” to share your feelings)
The Administration on Intellectual and Developmental Disabilities wrote an explanation of the situation that is a little easier to understand and here is a PDF about it that is written for disabled people.
This is me trying to explain it and almost dislocating my brain, have fun with this:
The long-term plan is that disabled people who might otherwise end up living in institutions because of their support needs will get “home and community-based services” (HCBS) instead, which means not living in an institution. This is actually less expensive to the government and obviously it leads to a better life for people with disabilities.
However some disabled people feel that the definition of “home and community-based services” needs to be more strict because otherwise, providers could make disabled people live in settings that are basically institutional settings disguised as something else. States get a financial reward from the government for moving people out of institutions and into the community, so there is a motivation to cut corners and try to categorize things as “HCBS” when they really are more of the same old thing.
For example, redistributing the residents and staff of a large institution into a bunch of houses and continuing to run everything the same way as before is not “moving those people into the community.” They are still in an institution, even if you call those houses “group homes” or “shared apartments.” There are also other ways to disguise an institution as HCBS or make HCBS into an institution.
As the Autistic Self Advocacy Network points out in their public comment on defining HCBS (which I highly recommend), denying someone housing unless they agree to receive certain services is something that makes a housing setting institutional. If someone doesn’t have a choice about what services they receive and they could get kicked out of their housing if they say no to certain services, then they obviously aren’t being supported to live independently, they are being threatened into compliance. ASAN also suggests that providers should not have the right to break rules about what HCBS is, just because they argue it is in the best interest of a particular disabled person. There should be some rules that can’t be broken, so that a disabled person’s supposed needs can’t be invoked to take away their freedoms (for example, the freedom to lock their door, have friends over, or decorate their living space).
I admit that I find policy stuff almost impossible to read and I’m guessing that is even more the case for the average person who has direct experience with institutionalization. But if you really think about this, it isn’t as complicated as it seems, and they really want to hear from disabled people. You should write in if you have something to say about how home and community-based settings should be defined, especially if you can write from your experiences or the experiences of disabled people you know.
28 June, 2012
Good work in bad places
To do good work in bad places has been an ambition of mine for years. I didn't even remember how much I had written about this until I happened to be looking at old posts on this blog. Originally I think I wanted to work with kids with autism and be the only person who was being gentle and not yelling in their face.
I do remember this one woman at The School who I'm sure contributed bad stuff in lots of ways (in an ABA school it's not like an individual instructor can really work against a fucked up behavior plan), but she was just very gentle. When the kids got excited or took initiative in making jokes or plans, she smiled to herself. Other teachers and instructors would jump at the chance to correct a kid's movement or word choice and they would have almost a hateful look in their eyes. This woman would correct them when it would have gone against the rules of her job not to, but it was softer, more like the way a mother or big sister would tell any kid to settle down and use their inside voice.
I'm seriously glad she was there, although obviously, who knows how the kids feel about it.
To do good work in bad places is an ego trip. To do things the way someone wants or be there right away when someone wants help. Having a nurse pass on a message from a resident, that I am the only aide who actually brings ice in the morning. That guy (who I'm glad has gone somewhere else because he really hated it here) would sometimes just stop me and say, "Anyone ever tell you you do good work?"
At three AM in the bathroom one of my residents was telling me how much it frustrates her that she has to spend the day in the activity room when there's so much she wants to get done in her room. "I want to write letters, my flowers are dead and no one has emptied the vase and new flowers are coming tomorrow. I can't get anyone to empty the vase." I threw the flowers away and emptied the water into the toilet of another room. She said, "Thank you so much, I don't have any money but if I did I'd give it to you."
There is also this thing with women with dementia, maybe one part of it is actually caused by the dementia, one part niceness, two parts fear. Or I don't know what to call it. Maybe for some people it's mostly friendliness, but it makes me uneasy. "You're so pretty." "You're so pleasant." "You're so nice." "You have such a pretty face!" "You're a good angel." "Thank you so much." "I get such good help from you, I want to give you a hug." "You're WONDERFUL."
Jesus Christ, no I'm not. I like hugs but not these hugs. I don't think I am the only person who gets them from most of these women--that is the first scary thing--but even for the people who I genuinely please or impress with my gentleness or carefulness, the satisfaction at pleasing them starts to go away pretty fast because I don't want to work somewhere where someone thinks I am special for listening to them or trying not to hurt them when I move them.
I used to want to work somewhere like that.
I'm not the smartest, fastest, nicest, or strongest person in the world. But I am someone who has a certain value set when it comes to working as an aide. I'm pretty aware of the ways that staff people can fall into abusing and controlling "clients," and I have a strong feeling that I'd rather be played than take away more freedom than my residents have already lost. I want to serve. I want to treat people as individuals. I don't want to get mad at people just for not fitting into a schedule. I don't want to treat people like objects I am moving from one place or time to another.
When friends have tried to encourage me to work somewhere that isn't an institution and doesn't have shitty ethics, I remember a time at camp when the awful guy was complaining about a guy with a disability who in his opinion acted with too much authority and was afforded too much respect by the other campers. "Sure, he may seem normal," the awful guy said, "but his elevator does NOT go all the way to the top floor."
Every single other person in the room laughed. "That's such a funny way to say it!" one girl exclaimed. All the people in the room happened to be counselors who didn't have a family member with a disability or much experience with disabled people prior to starting this job. Still, they had always treated campers with respect. I was surprised to hear them laughing at a joke about someone's disability.
I started to think that a lot of staff are like chameleons. Their attitude toward disability and their values as a staff person--their idea of what they're trying to accomplish in their job, and their definition of right and wrong--can completely change just based on where they are. The culture of camp was generally positive and respectful about campers so the inexperienced staff people picked this up and imitated it, but they were completely willing to talk about a disabled person in a disrespectful way if they got into a conversation where that seemed like the normal thing to do.
I am not a chameleon. For one thing, I'm disabled. Also, for various reasons I'm not unaware of my capacity for evil, and learning about staff infection has pretty much been my life's work (at this early date). I end up thinking there's going to be staff in bad places and it's better me than a chameleon. I'm not going to be untouched, I'm definitely going to get shaken and pulled into a lot of fucked up things, but I will do less than they would do. Hopefully, if I take their space, they might end up working in a good place or not working as a staff person at all.
This is the way I try to think about it mathematically. I feel like I'm not necessarily going to contribute much to the world, but I can contribute this. I am the kind of person who's more likely to be able to do good work in bad places.
The math is not always working for me anymore.
I read this: Heart Failure: Diary of a Third Year Medical Student. It starts off with this guy promising to always be the person he is. He probably stays more the person he is than someone else would, but it's still pretty horrifying to read.
Blah blah blah Nietzsche blah blah blah I'm thirteen years old, but battle not with chameleons because the longer you gaze into institutions the less and less there is of the part of you that was naturally inclined to do good work.
I do remember this one woman at The School who I'm sure contributed bad stuff in lots of ways (in an ABA school it's not like an individual instructor can really work against a fucked up behavior plan), but she was just very gentle. When the kids got excited or took initiative in making jokes or plans, she smiled to herself. Other teachers and instructors would jump at the chance to correct a kid's movement or word choice and they would have almost a hateful look in their eyes. This woman would correct them when it would have gone against the rules of her job not to, but it was softer, more like the way a mother or big sister would tell any kid to settle down and use their inside voice.
I'm seriously glad she was there, although obviously, who knows how the kids feel about it.
To do good work in bad places is an ego trip. To do things the way someone wants or be there right away when someone wants help. Having a nurse pass on a message from a resident, that I am the only aide who actually brings ice in the morning. That guy (who I'm glad has gone somewhere else because he really hated it here) would sometimes just stop me and say, "Anyone ever tell you you do good work?"
At three AM in the bathroom one of my residents was telling me how much it frustrates her that she has to spend the day in the activity room when there's so much she wants to get done in her room. "I want to write letters, my flowers are dead and no one has emptied the vase and new flowers are coming tomorrow. I can't get anyone to empty the vase." I threw the flowers away and emptied the water into the toilet of another room. She said, "Thank you so much, I don't have any money but if I did I'd give it to you."
There is also this thing with women with dementia, maybe one part of it is actually caused by the dementia, one part niceness, two parts fear. Or I don't know what to call it. Maybe for some people it's mostly friendliness, but it makes me uneasy. "You're so pretty." "You're so pleasant." "You're so nice." "You have such a pretty face!" "You're a good angel." "Thank you so much." "I get such good help from you, I want to give you a hug." "You're WONDERFUL."
Jesus Christ, no I'm not. I like hugs but not these hugs. I don't think I am the only person who gets them from most of these women--that is the first scary thing--but even for the people who I genuinely please or impress with my gentleness or carefulness, the satisfaction at pleasing them starts to go away pretty fast because I don't want to work somewhere where someone thinks I am special for listening to them or trying not to hurt them when I move them.
I used to want to work somewhere like that.
I'm not the smartest, fastest, nicest, or strongest person in the world. But I am someone who has a certain value set when it comes to working as an aide. I'm pretty aware of the ways that staff people can fall into abusing and controlling "clients," and I have a strong feeling that I'd rather be played than take away more freedom than my residents have already lost. I want to serve. I want to treat people as individuals. I don't want to get mad at people just for not fitting into a schedule. I don't want to treat people like objects I am moving from one place or time to another.
When friends have tried to encourage me to work somewhere that isn't an institution and doesn't have shitty ethics, I remember a time at camp when the awful guy was complaining about a guy with a disability who in his opinion acted with too much authority and was afforded too much respect by the other campers. "Sure, he may seem normal," the awful guy said, "but his elevator does NOT go all the way to the top floor."
Every single other person in the room laughed. "That's such a funny way to say it!" one girl exclaimed. All the people in the room happened to be counselors who didn't have a family member with a disability or much experience with disabled people prior to starting this job. Still, they had always treated campers with respect. I was surprised to hear them laughing at a joke about someone's disability.
I started to think that a lot of staff are like chameleons. Their attitude toward disability and their values as a staff person--their idea of what they're trying to accomplish in their job, and their definition of right and wrong--can completely change just based on where they are. The culture of camp was generally positive and respectful about campers so the inexperienced staff people picked this up and imitated it, but they were completely willing to talk about a disabled person in a disrespectful way if they got into a conversation where that seemed like the normal thing to do.
I am not a chameleon. For one thing, I'm disabled. Also, for various reasons I'm not unaware of my capacity for evil, and learning about staff infection has pretty much been my life's work (at this early date). I end up thinking there's going to be staff in bad places and it's better me than a chameleon. I'm not going to be untouched, I'm definitely going to get shaken and pulled into a lot of fucked up things, but I will do less than they would do. Hopefully, if I take their space, they might end up working in a good place or not working as a staff person at all.
This is the way I try to think about it mathematically. I feel like I'm not necessarily going to contribute much to the world, but I can contribute this. I am the kind of person who's more likely to be able to do good work in bad places.
The math is not always working for me anymore.
I read this: Heart Failure: Diary of a Third Year Medical Student. It starts off with this guy promising to always be the person he is. He probably stays more the person he is than someone else would, but it's still pretty horrifying to read.
Blah blah blah Nietzsche blah blah blah I'm thirteen years old, but battle not with chameleons because the longer you gaze into institutions the less and less there is of the part of you that was naturally inclined to do good work.
26 June, 2012
the split
Clayton and I talked about how he got really upset when I said that I hate men.
1. he said that he was partly upset because when I said I hated men he assumed I didn’t include him and he feels like people have always not counted him as a man because of his disability
2. also that it just hurt
I tried to talk about “the split” which is really what I am thinking of when I say I hate men. It is just a feeling of parts of you being in a really deep opposition to each other. For example on Saturday a really kind and friendly bad brains man (about twice my age) sat next to me on the bus and I loved that we talked and it made my whole day better but:
1. he asked me if he could sit next to me and I basically couldn’t say no
2. he kept referring to my looks
3. he made me take off my sunglasses so he could look at my eyes
4. he asked me if I had a boyfriend
This didn’t really bother me because he wasn’t trying to pressure me into giving him information so he could contact me. It didn’t feel the same as that. But it is an example of how I hate men anyway. Why did he feel like that was okay? Why was it so normal that I didn’t even feel bothered by any of it?
This is the split and it’s hard to tell how I feel about it because I want to treat everyone with charity and lovingkindness and be interested in people even if they do something I don’t agree with, even if they do something I think is terrible.
But sometimes I wonder what is me being charitable and what is me being railroaded and just putting up with people’s privilege.
In high school my best friend was this really sweet lovely kid who was also such a straight guy. He didn’t treat me bad for being gay like the other straight guys but he still said ridiculous stuff like that he thought people were just pretending to be gay for attention. I loved this boy and something I love about myself is that I am a person who could love him even though he did stuff like that.
But damn there is something a little strange in it and I occasionally get spitting mad when it occurs to me how calm I am.
Recently I said something horrible to a friend from a minority group I’m not part of. There are a lot of things wrong with what I said but the worst thing is that I didn’t feel instinctively that it was wrong the way I would if it was something that was hurtful to me. So she had to explain to me how bad it was.
She wasn’t mad. She was really sweet about it, and in her calmness, I’m guessing, was the split between her and me.
1. he said that he was partly upset because when I said I hated men he assumed I didn’t include him and he feels like people have always not counted him as a man because of his disability
2. also that it just hurt
I tried to talk about “the split” which is really what I am thinking of when I say I hate men. It is just a feeling of parts of you being in a really deep opposition to each other. For example on Saturday a really kind and friendly bad brains man (about twice my age) sat next to me on the bus and I loved that we talked and it made my whole day better but:
1. he asked me if he could sit next to me and I basically couldn’t say no
2. he kept referring to my looks
3. he made me take off my sunglasses so he could look at my eyes
4. he asked me if I had a boyfriend
This didn’t really bother me because he wasn’t trying to pressure me into giving him information so he could contact me. It didn’t feel the same as that. But it is an example of how I hate men anyway. Why did he feel like that was okay? Why was it so normal that I didn’t even feel bothered by any of it?
This is the split and it’s hard to tell how I feel about it because I want to treat everyone with charity and lovingkindness and be interested in people even if they do something I don’t agree with, even if they do something I think is terrible.
But sometimes I wonder what is me being charitable and what is me being railroaded and just putting up with people’s privilege.
In high school my best friend was this really sweet lovely kid who was also such a straight guy. He didn’t treat me bad for being gay like the other straight guys but he still said ridiculous stuff like that he thought people were just pretending to be gay for attention. I loved this boy and something I love about myself is that I am a person who could love him even though he did stuff like that.
But damn there is something a little strange in it and I occasionally get spitting mad when it occurs to me how calm I am.
Recently I said something horrible to a friend from a minority group I’m not part of. There are a lot of things wrong with what I said but the worst thing is that I didn’t feel instinctively that it was wrong the way I would if it was something that was hurtful to me. So she had to explain to me how bad it was.
She wasn’t mad. She was really sweet about it, and in her calmness, I’m guessing, was the split between her and me.
Subscribe to:
Posts (Atom)
