Some people do different things or need different things from the average person. (Or the imaginary average person.) Other people have to decide how they feel about that difference.
1. Should the average person accept that some people do this different thing, and not be mad about it? Should institutions and communities try to adjust to meet the needs of these people?
2. Or should the person who's different change their needs to be more like the average person's needs, change their behavior to draw less discrimination and aggression, and be held responsible for any ways they get hurt if they fail to change?
As a person who does and needs some different things, I feel like option one is the right answer in most cases, unless the different thing someone does is being a serial killer. The majority of the time I feel like it's just a more interesting and efficient way to live.
However, usually a minority group's right to option one is supported or denied on the grounds of whether they can help being different or not. If you want someone to be responsible for your bad behavior toward them, you argue that they are being different on purpose.
One example I can think of is people who are against gay marriage and go around saying, "But gay people already CAN get married! They can marry the opposite sex!" This puts the blame on gay people for not changing our needs to match the majority. I also saw someone who, when asked if gay people were allowed in their religion, said that we probably wouldn't be interested in joining anyway. This implies that if people wanted to not be excluded for being different, we just wouldn't be different.
There is also the whole idea that poor people are poor because of some kind of moral failing and everyone who tries not to be poor isn't. Therefore not helping people who are poor is supposed to be tough love encouraging them to straighten up and become rich.
When people argue for option one, they say that the difference is involuntary. "I was born gay. If I could take a pill to be straight I would. The idea of kissing a man makes me want to throw up." Etc. What I think about this dichotomy isn't the point because it's so universal. If you try to talk about this stuff in other ways most people will not even know what you're saying. When you say that someone can't help being different, you're almost always indicating that you're on their side.
Therefore you can kind of tell what side someone's on just by how they talk about someone who is different.
Medical and mainstream culture descriptions of autism are steeped in option two language. They are very superficial descriptions of things Autistic people do, with the implication that Autistic people do these things simply because they like them, or for no reason at all.
1. "Autistic people stim" not "Autistic people stim BECAUSE" or "Autistic people have motor/sensory stuff going on that causes them to move like this or be soothed by doing this."
2. "Autistic people avoid eye contact" not "It scares Autistic people to look at other people's eyes."
3. "Autistic people avoid touch" not "Some kinds of touch can scare or hurt Autistic people."
4. "Autistic people have 'splinter skills' and strong interests and like to do the same thing over and over" not "Autistic people can learn specific things better than general things, and see number five."
5. "Autistic people like rituals and are resistant to change" not "Autistic people do better when they are in situations where they know what's going on and what's coming next, to the extent that some people can't handle life at all when it's not like that."
#5 has been on my mind a lot lately because the last few months have involved me having to do a lot of unplanned things and make a lot of sudden transitions. This has reduced my quality of life and my ability to do other stuff, which is clearly because I have a disability that makes it hard for me to emotionally and cognitive cope with surprise and change. However some people would say it's because I want to make out with train schedules.
Some OTHER people would probably say that because professionals don't know exactly why Autistic people do certain things (the reasons I'm giving are from Autistic cultural/anecdotal knowledge, not from books), they have to phrase everything in terms of what an Autistic person chooses to do. First of all, the reason professionals don't know why Autistic people do things is because they usually only study how to to make Autistic people not do things. I think their phrasing shows what they are interested in knowing not what they're able to know.
But I also I just fail to believe that people can't say, "It seems like Autistic people have to do this, for some reason."
I made up an imaginary mobility impaired person and I'm going to tell you a slightly unlikely but not absurdist story about his life. People are a little less likely to blame SOME mobility impaired people for their problems, which is why I think this story helps illustrate my point. But I'm also sure that it has literally happened plenty of times.
An imaginary kid named Sidney learns to walk at the usual age, but he always sits down crying after a few steps. Even when adults try to encourage him, the same thing happens. Sometimes they can bribe him with candy to walk across the room, but he cries while he's walking. When Sidney gets old enough to talk, he confirms that walking more than a few steps really hurts.
Not finding any immediate solutions, Sidney's parents continue to push him around in a stroller. Eventually they get him a wheelchair so he can be more independent. As he grows up, a few things change about how Sidney gets around, but since he is an imaginary person I won't go into detail. The short version is, he grows up to be an almost full time wheelchair user.
No one is able to trace Sidney's problem to a genetic condition or an injury to his legs or brain.
If a doctor describes Sidney's disability as "preferring to use a wheelchair and avoid walking," this doctor is not on Sidney's side. The description fails to acknowledge Sidney's experiences and implies that he's irrational. It doesn't encourage healthcare providers to try and help Sidney with his actual problems--in fact it may mean he can't access services he needs. It doesn't encourage other people to accommodate Sidney's wheelchair. It doesn't encourage Sidney to feel confident in speaking up against injustice, seeking help, and just taking care of his own body.
In many ways, this description of Sidney's disability can physically, emotionally, and socially hurt him. If the doctor says he wants to help people like Sidney, Sidney better watch out.
20 November, 2012
02 November, 2012
I went on Facebook before going to bed tonight and discovered that "Ron" from this post died this morning. I feel a little weird expressing too much grief about this, after all I haven't seen Ron in more than a year now.
He was one of the most original people I've ever known and he lived with so much joy and confidence in himself. More than anything I am so glad that Ron got to spend his life with his family, in his own home, with all the things he loved to collect. I'm glad that if anyone ever tried to stop Ron from living life his way, they did not succeed and by the time I met him (he can't have been older than 50) he was very set in his ways.
No one talked, danced, wrote, or thought like Ron. He wasn't just unique, though. He was kind and he was strong enough to ask for what he needed from other people. He was brave enough to be joyfully himself.
I am so sad that Ron has gone out of the world, but I'm glad that he was in it, and I'm glad that so many people with and without disabilities had the chance to meet him and see what a beautiful person he was.
He was one of the most original people I've ever known and he lived with so much joy and confidence in himself. More than anything I am so glad that Ron got to spend his life with his family, in his own home, with all the things he loved to collect. I'm glad that if anyone ever tried to stop Ron from living life his way, they did not succeed and by the time I met him (he can't have been older than 50) he was very set in his ways.
No one talked, danced, wrote, or thought like Ron. He wasn't just unique, though. He was kind and he was strong enough to ask for what he needed from other people. He was brave enough to be joyfully himself.
I am so sad that Ron has gone out of the world, but I'm glad that he was in it, and I'm glad that so many people with and without disabilities had the chance to meet him and see what a beautiful person he was.
09 October, 2012
Rabbits
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.
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.
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.
Subscribe to:
Posts (Atom)
