Ettina blogs:
Minna Mettinen-Kekalainen, a woman with Asperger Syndrome and amyotrophic lateral sclerosis, has finally been given the care she needs, after much protest. She is severely disabled and was cut off from home assistance, only managing to stay alive because her friends were willing to feed her (she needs tube-feeding).
In protest, she started a hunger strike, which she called off in order to stay alive (possibly she figured out that her starving to death wouldn’t bother someone willing to deny her such basic care as tube-feeding and diaper changes).
That is absolutely horrible. For there to even be a debate about whether someone gets the feeding tube that they need is horrific.
I’m not quite sure what the title is supposed to indicate–surely not that autism spectrum people are “nasty”?
Sarah, the title makes more sense if you follow the link to the blog post. There, the blogger links to the news site which reported this story, and quotes a number of the comments on the original article. Many of the Sudbury Star commenters seem to believe that Mettinen-Kekalainen’s autism is “just BS,” and that she is really just a nasty person, a “whiner,” a “drama queen,” and so forth.
The comments really are rather stunning, and they make for distasteful reading.
I followed the link, but still didn’t have enough history to understand. How many caregivers did she go through? At what point did the company withdraw aid, and was it a deliberate thing or could they simply not find anyone else willing to go to her? Was insurance involved, or was she paying for this out of pocket? Were the caregivers trained to deal with autistic behavior, and warned that this woman might say terrible things to them? And what *did* she say? (And yeah, there was nastiness in the comments, but it also sounded like they were reacting to some larger set of information that wasn’t linked.)
I have to say I’m of two minds about it. I understand the woman has Aspergers, and people with AS will often say things that shouldn’t be taken personally. I agree that it’s insane to retract needed medical care from someone who will die without it. But I don’t believe “verbal abuse” is something any person should just put up with, especially if they’re not getting paid enough to make that kind of stress worthwhile. My grandmother was a home nurse for an elderly woman, and the racist bullshit that woman would spew at her (and me, when Grandma brought me to work with her) made me wonder why she bothered. But Grandma didn’t have a college degree and she was sick herself — cancer, which eventually killed her; she kept working up ’til the day she died. She couldn’t afford to do anything else. I can’t help but wonder how much the stress of putting up with that woman contributed to her own health issues.
Another article on the situation. This seems to be (part of) the reason she was denied care:
I don’t see how this is enough to justify refusing care outright–if, indeed, is ever acceptable to refuse home care.
She has a Finnish name, so assuming this is in Finland, caregivers of this kind would be paid from taxes by the city. My mother has worked as a personal caregiver (though not a nurse), so that was how it was arranged that time. There might be some private hospital arrangements as well, where she’d have to pay a bit more herself. The Finnish general health insurance usually covers quite a lot though.
I’m shocked that they’d just refuse aid though. That’s horrifying. There are always two sides to every story, but that doesn’t mean there was a valid reason to their reaction.
Deniselle, it’s in Canada.
Interesting. I can actually see that as a major hazard.
If you were looking for a doctor, who here would want one if she had multiple complaints filed against her? Anyone? Sure, you might think “Oh, the complainers were just nuts” but all other things being equal, you’d probably choose someone else.
And if you ran a hospital and were hiring a nurse, would the same apply? How about if you talked to your lawyer? how about if your lawyer told you “Well, that nurse seems competent, and the complaints were unfounded. But accidents happen, even to competent people. If you hire a nurse with a complaint record and an accident happens on her watch, then your liability will increase.”
Sounds like she’s going after their lifetime income, and she’s doing it in a way that makes it verty difficult to counter. That doesn’t mean she should be denied care, but I can see why nobody will work for her.
Why are you automatically assuming that the complaints are unfounded? Why are you assuming she’s maliciously “going after” their future earnings? If the nurses weren’t following her doctor’s orders, she had every right to complain. If they weren’t following her doctor’s orders, it could easily have been a major hazard for HER.
Apparently the woman is mentally ill.
If she’s just choosing to be difficult, I can see the argument for denying care, but what if it isn’t a choice? Mental illness is no more a choice than cancer is. Are we saying in effect, if you’re sick in a particular way we’ll provide care, but if, through no fault of your own, you’re sick in this other way, you’re out of luck?
There has got to be a way to provide care in this situation.
I can see how it could come across that way, and that wasn’t what I meant to imply. I was just trying to explain how that particular type of threat would provoke a different reaction than, say, insults.
I don’t think someone should be denied care, especially if there are various disabilities. But frankly, I found the linked blog post here to be extraordinarly and disgustingly offensive. The amazingly biased (and, in the vast majority of cases, blatently wrong) descriptions of and assumptions about home health care workers are beyond the pale. And the idea that ANYONE should just put up with verbal abuse is about one of the most vulgar things I’ve read in a long fucking time. No one is paid enough to endure verbal abuse, least of all underpaid home health care workers. No one is paid enough to endure threats to their own livlihoods.
Yes, it’s possible that in this particular case this particular woman coincidentally went through a series of abusive, incompetent, and/or neglectful workers. Unfortunately, there are workers that fit this description. Yes, this is something should be looked into. But, that’s not what this post was advocating. This post was advocating that home health care workers should just deal with verbal abuse, and if they aren’t able to, they should just go get another job.
A) Right, just go get another job. Sounds sort of like “she should just leave.”
B) Verbal abuse is one of the clearest and fastest causes of worker burn out, leaving far fewer capable and qualified workers, in a field that’s already lacking these workers.
FYI and FWIW, I am not a home health care worker, never have been, have no desire to be, and do not know anyone who is. I am, however, a domestic violence advocate who has seen the effects that verbal abuse can inflict on a person, and do not take lightly anyone suggesting that any person should be expected to deal with that, for any reason at any time.
@ bean
I don’t think it’s that simple. Home health care workers and their institutional equivalents (CNAs and personal care aides) are underpaid and often overworked. No, people shouldn’t have to put up with abuse. But it inevitably ends up being part of the job. Not everyone is pleasant to deal with. Some people are just assholes. Some people get bitter as hell about being in a dependent position and take it out on the people trying to help them. Some people have mental illnesses or disabilities that prevent them from understanding their actions. None of these things merit a death sentence, which means you need to provide care, which means SOMEONE is going to have to put up with it.
My husband worked for many years as what was then called an habilitation aide and now is called a personal care aide at a home for people with developmental disabilities. Contrary to popular stereotype of people with development disabilities as sweeter and nicer than the general population, there are assholes among the developmentally disabled, just as there are among every group. Everyone got care. He’s been hit, he’s been choked, he’s been kicked in the nuts. And no, he wasn’t paid “enough” to put up with that. No, it wasn’t part of the job description as laid out by HR. And yes, there were psychologists and social workers and medications and behavior modification plans to find ways to mitigate and de-escalate. It was taken seriously by the administration. But there was no way to guarantee unpleasant things wouldn’t happen. Even the few times that people were moved to different facilities that were “better equipped to handle them,” all that meant is that someone else would have to deal with it.
I don’t know enough about the particulars of this story to say what should have happened. There usually are people who are particularly adept at dealing with difficult clients, and I think even if the issue was threatening the nurses professionally, there should have been some sort of work-around. But you can’t say that no one should be denied care, and no one should ever have to put up with verbal abuse. If no one has to put up with verbal abuse, then someone will be denied care.
There is some seriously offensive ableism happening all over this thread. Assumptions that the mentally ill are intrinsically more prone to being abusers than others? Or, at best, “poor social skills that *appear* to be abusive.” And many of you seem to think “she’s mentally ill” is a proper explanation for abusive behavior. Not to mention that you assume that it was *she* who was in the wrong–and not her caretakers. You don’t know the details, but you assume the worst because “she’s mentally ill.” Maybe y’all forgot to check your able-bodied privilege…
@Jack Stephens: Maybe you could at least put “nasty people” in scare quotes? One shouldn’t have to follow the link in order to get the context and know that this isn’t a slur.
I think that depends on what kind and what level of care one is talking about. If someone is not capable of treating home health care workers of at least the minimum of respect (meaning no verbal or physical abuse), then yes, they should be denied home health care workers. They should be given other options for care, whether that means some sort of in-patient care or some sort of co-0ccuring behavior treatment.
Here’s the thing — yes, people may have mental or physical disabilities. But none of them causes a person to become verbally or physically abusive to other people. Abuse is always a choice, and choices have consequences.
[And, if someone actually had some very rare disability that has yet to actually be defined that actually caused them to be abusive to other people, then they should be locked up for the safety of society. Yes, they should be given care within that facility, just as anyone who is deemed a danger to society would be. But, if they really are unable to control their abusive behaviors, then they should be treated just as anyone else who is unable to control those behaviors would be.]
It may only be tangentially related, but here’s an anecdote about where I work. I work as a videogame tester. I enter bugs in databases after finding them in the software I’m testing. Then developers and QA people review it and decide what to do with it, wether its fixable, how, and such.
That doesn’t sound so bad. But then I have to follow standards that mean I can’t even *imply* a client or a developer botched their job (sent an incomplete build that wasted 140 tester/hours), or does not know on what foot to dance, or that they are stupid to close my bug as a “duplicate” because they entered the same issue, at about the same time (sometimes even later in time), with even less information (usually one liners). I have to deal with the BS and say nothing about it, except rant to fellow testers maybe.
I’m sure Lead Testers and Project Managers, who have actual real-time chats with the client might feel even more strongly about it.
That’s not to mention salesclerks and cashiers in most retail stores. Ever been at the item-return desk?
But yeah, someone has to do it. Or those bugs won’t find themselves (which would result in a crappy retail product), and those goods won’t sell themselves.
Not that I think I have it worst than people who deal with the disabled in person. It’s just that most any job has to deal with BS thrown their way. Your job undone because your boss doesn’t like your method (never mind the results). And bosses having to fire working-class employees who have no futur planned steady income, because of say, a recession (small businesses are often forced to, big businesses often do it in anticipation of a lesser yearly income).
And if the person refuses in-patient care? And if insurance refuses to cover in-patient care because it’s really not necessary for the condition the person has?
And if you institutionalize the person, then the workers at that institution have to put up with the abuse instead of the home health care worker.
Again, it’s not that simple. When my kid has a tantrum, he’s not being abusive. He’s being three. When a 5’10”, 250-pound man with the mental (and emotional) capacity of a three-year-old has a tantrum, he’s not being abusive either. But the result can be serious injury to the people around him. Those people can take steps to reduce the liklihood of him having that tantrum, and they can ensure there are consequences for that tantrum. But they can’t guarantee he’ll never have another tantrum. And you can’t just put this person who cannot care for themselves and doesn’t have a family to care for them out on the street.
That doesn’t apply directly to the women in this post. Again, I don’t know enough about the specifics to say what all the options were or what wasn’t tried that should have been.
But it’s just not that simple.
Schala:
Oh. My. God.
This is one of the most dehumanizing ways to talk about disabled people I’ve seen in some time. Really? That was the analogy you came up with–eliminating the (inanimate) problems from the otherwise smooth-working program? Angry customers? And the implication that the people who have it really bad are the ones who have to “deal with the disabled,” of all unholy things, in person?
Can we remember that it’s not just health care workers, but people in need of care, who are human beings? And that disabled people are people, not problems?
You’re being foolish Bean. I have been a home health aid in Pennsylvania, for quite a few years. And bluntly, I’m in agreement with Chingona. Not everyone is sunshine and daisys and life-care shouldn’t depend on whether someone was less than pleasant to be around. As people are people, they – do – slip up. Nor can everyone control their behavior. As an example, one little girl I worked with had the habit of fishtailing when she was excited and/or picked up and tended to hit your face wth the back of her head, hard, unless you maneuvered around and sometimes that didn’t work.
So, what, she shouldn’t get home care because sometimes I was smacked in the face with forty to sixty odd pounds (I was there a while) behind the blow? By anyone’s definition that falls under physical harm. So, whaddya say, lock her up in an institution as a danger, was that it? Damn ablist bullshit, that, there’s quite enough of that thinking going on without you adding to it. Unless you’ve done the job yourself or worked closely with someone who – has -, it’s best not to make broad statements about who does and – does not deserve – home care by how ‘good’ the workers get treated.
That is a tricky one. The reality is that institutional care is designed to be more accepting of people who are unusually difficult and/or abusive, primarily because it is basically like a jail.
This is perhaps better for the workers: a complaint filed by an institutional resident probably has much less clout than one filed by a home care resident, just like a civil suit filed by an inmate has less clout than one filed by me. Although it is, obviously, much worse for the patient involved, sometimes unimaginably so; if I were confined to institutional care for the rest of my life I would probably join the large list of attempted suicides.
So the philosophical issue becomes one of which choices are appropriate to make.
Let’s say you give someone three choices; (1) accept institutionalized care and act like you want; (2) control your behavior and get home care; or (3) decline care. (These are basically the options if you take “get home care and act how you want” off the table.)
Is that a fair choice? Is it a fair choice if “control your behavior” is difficult to do? How difficult does “control your behavior” have to be in order to make the choice inappropriate? And is it ever appropriate to institutionalize someone who absolutely, positively, doesn’t need to be there?
Many people (including me) might feel those three choices are fine… IF “control your behavior and get home care” is completely possible. But of course, who decides that? Where does that line fall? What does “possible” even mean?
It never is.
But you can’t say that no one should be denied care, and no one should ever have to put up with verbal abuse. If no one has to put up with verbal abuse, then someone will be denied care.
I put up with verbal abuse as part of my job. In fact, I not only put up with, but I sometimes legitimize things which could easily be interpreted as verbal abuse because it is ALSO TRUE, and part of my work with adults with mental disorders is helping them learn techniques to cope with staff who won’t do what they want, and the staff present is me.
My previous job, I got hit, bitten, and scratched, often deliberately.
And yes, there is an emotional toll. And it sucks. But just because it sucks for the staff person doesn’t negate that is sucks MORE for the people we are trying to help. At the end of the day, I go home to an apartment that is mine, with things I like, and can do what I want. My clients often don’t have that luxury.
No one, not even retail sales clerks, are obligated to put up with abuse – verbal or physical. And any employer who required them to do so is unethical and abusive themselves. Yes, everyone, including health care workers and retail workers and everyone else who works or interacts with other people in some capacity (IRL or virtually or anything else) may have to deal with assholes from time to time. And they might have to suck it up and “take it.” But asshole behavior is not the same as abusive behavior — and it’s incredibly dangerous to assume that they are one and the same. It minimizes abuse. It’s also incredibly dangerous to have the sort of mentality that believes that ANYONE should EVER have to “suck it up” and accept abusive behavior.
I suppose they always have that choice, and if they make that choice, they should accept the consequences of it. I work with a clientelle that makes a hell of a lot of “bad” choices — some which may result in extreme harm or even death, but they have the right to make them, and it is not my job to save them from those bad choices (and, in fact, would be incredibly harmful to the client in the long run if I were to do so). I can inform them of their options, and I can help support them in making changes, but the choice is theirs to make.
This is a very different issue, and a larger one. Certainly one that should be looked at in the long run. But, IMO, the answer is NOT to simply expect home health care workers to be abused. Looking at the former while NOT resorting to the latter may may result in a short-term solution that may mean that some home health care workers will continue to be abused. But if the latter is simply espoused as undeniable and unchangeable fact, then that will remain the solution for eternity. And we will continue to live in a society that endorses and condones violence in all manner of relationships and avenues of life.
Yes, but in an entirely different context, one in which they are far less likely to be the sole care provider, alone, and significantly less likely to be placed in a dangerous situation.
And yet, this is not an example of abusive behavior, so I’m not quite sure what the point of this little “anecdote” is.
Oh, and one more caveat — while I am not a home health care aid, that does not mean that I do not work with people with disabilities. I do, on a regular basis, as part of my job. I am fully aware of the various issues that are involved in working with people in an extremely wide variety of life situations, facing a wide variety of barriers. The idea that disabilities can “cause” someone to be abusive is simply ridiculous — and incredibly insulting to people with disabilities. Yes, some people with disabilities may also be abusive, but that’s not because of their disability.
I don’t think we’re the ones minimizing abuse. I think you are conflating abuse in the types of situations in which you encounter it in your work with other types of bad treatment that people dish out to each other.
We don’t really know whether the woman in this story was actually abusive or just a jerk or if she had legitimate complaints or some combination of all of those. The term verbal abuse in a newspaper article is just a fancy way of saying she was mean to the workers. I suspect prison guards get a fair amount of “verbal abuse.” That doesn’t mean they are actually being abused, in the way you mean it.
Also, we don’t know the situation from her perspective. As someone with AS who has been referred to as “abusive” in the past, I can think of several possibilities of why this woman was upset by things the home care workers may have been doing, and why her behavior was not in fact abusive but may have appeared that way to uneducated people. It’s purely speculative, of course, but so is the assumption that she was “abusive.” There are complex layers involved here, of course, but it is rather telling that so many people react to stories like this by focusing on the caregiver, rather than the disabled person’s perspective. Autistic people in particular, are commonly demonized by talk about how hard it is for other people to put up with us.
Excuse me? I think I’m the one who has been very clear about NOT confating abuse with general assholishness.
[emphasis added]
Wow, that’s an amazing amount of contradiction to appear in one paragraph. By your own admission, you don’t know if the woman was abusive or not, but you’re more than willing, in the very next statement, to assume that “verbal abuse” was a “fancy way of saying she was mean to the workers.”
And, no, we don’t know whether she was an asshole or whether she was actually abusive. And I’m not making any claims as to whether she was or not. I’m simply commenting on the idea that home health care workers (or anyone else) should be expected to be abused or “get out.” (As I said, I’ve heard that more than once about the victims of abuse. It really is no different — in fact, in a work situation, not only do you have the same financial barriers that an abused woman might have, but you have the additional barriers of not being able to go to a shelter for the abuse, not being able to collect benefits because you quit your job, and being blackballed from getting jobs and housing in the future.)
“And yet, this is not an example of abusive behavior, so I’m not quite sure what the point of this little “anecdote” is.”
Anecdote doesn’t need to be in quotations, and despite my anecdote not having a study behind it, it’s clearer than your view, you who’ve never dealt with the job. It was a particular example in what a few others’ have described on this thread – scratched, hit, et cetera along with what you propose to take away because of such things.
since you typed –
” If someone is not capable of treating home health care workers of at least the minimum of respect (meaning no verbal or physical abuse), then yes, they should be denied home health care workers. ”
Respect doesn’t mean not getting swatted at or not getting yelled at in frustration. It isn’t a nine to five retail job where you see the customers for five minutes and then they go on their merry way. It’s a job that often involves an intense relationship because it is often – personal – and requires communication skills over long periods of time. As to my quote of you, it should be self-evident as – you brought bodily injury up-. Chingona had a good example with the ‘tantrum’ scenario. You seem to want clear-cut lines in the home health aid n’such profession – that is, such and such behavior from a client is done deliberately out of malice and only malice and that the participants all know who, exactly is in the wrong/started the problem. Since behavior doesn’t work like that, your Yank Away Their Aid! is faulty.
I think you did conflate because you assumed that in the post in question the people were using verbal abuse the same way you would use it. I don’t think that’s a safe assumption.
Look, the home health care workers I have known have always been free to reject a particular client they didn’t feel they could work with. The most common reason was the client was racist and would use offensive – and yes, abusive – language toward the worker. I absolutely, 100 percent support the rights of those workers to not be in that environment. And I know that not every agency is good about situations like that, and yes, if a worker rejected too many clients and couldn’t seem to get on with anybody, they might find they didn’t get too many new offers. But most of the agencies understand that it’s in everyone’s interests to have a decent working relationship between the care provider and the client.
But there’s a difference between an individual worker saying they cannot deal with a particular client and an agency or health department withdrawing needed care. And not withdrawing care means someone has to provide it.
In #16, I made exactly the distinction you’re complaining I didn’t make. What I objected to in your original comment was making it seem like it’s really clear-cut and black-and-white what people shouldn’t ever have to put up with as part of their job.
What does having a “study behind it” have to do with anything?!?! The anecdote you described did not involve abusive behavior, therefore it really has nothing to do with what I believe a worker should be expected to put up with.
Well, either they meant actual verbal abuse, or they meant something else that wasn’t actually verbal abuse but was something else, and then they (or you) are the ones playing unsafe games with language and assumptions. Abuse has a specific meaning, and degrading that meaning by using it to refer to “asshole behavior” or whatever is pretty damn dangerous. It’s sort of like saying that one got “raped” because they got ripped off. It’s offensive and dangerous.
There are clear-cut lines around abuse. If there person is abusive, it has absolutely NOTHING to do with their health or their disability or lack thereof. It has to do with choosing to abuse. If they are not in control of their behavior, there are other issues there — and if they are a danger to others and are unable to control that danger, then that needs to be addressed, just as it would with anyone who was a danger to others, regardless of disability or lack thereof.
Alright – describe abusive behavior. I’m assuming it’s verbal harm or physical harm. Am I wrong?
Abuse is defined as the systematic pattern of behaviors in a relationship that are used to gain and/or maintain power and control over another.
“If they are not in control of their behavior, there are other issues there — and if they are a danger to others and are unable to control that danger, then that needs to be addressed, just as it would with anyone who was a danger to others, regardless of disability or lack thereof.”
This, then. Working with clients does not mean you’ll never get nailed in the face again. It means you try to minimize it, work around it – but it doesn’t mean it stops altogether. By your reasoning, people who engage such behaviors need to be institutionalized, at least according to previous posts because they’re a ‘danger to others’. (unless you have a cutoff line (and who would judge?) by amount of pain daily, which doesn’t work for a variety of reasons). But then, that leaves the workers in the institution dealing with the same behaviors – it doesn’t make them ‘go away’, you’re only moving the behavior onto different people while making the institutionalized person’s life as rigid as a jail cell.
Well, there’s the question, now isn’t it. Is it possible to minimize it or work around it? I think the responses should be vastly different depending on the answer. I mean, if you can minimize it or work around it, then they aren’t really a danger to others, now, are they?
And I’ve already addressed the issue of it still being there in an institutional setting.
Well, there’s the question, now isn’t it. Is it possible to minimize it or work around it? I think the responses should be vastly different depending on the answer. I mean, if you can minimize it or work around it, then they aren’t really a danger to others, now, are they?
And I’ve already addressed the issue of it still being there in an institutional setting back in #21.
” I mean, if you can minimize it or work around it, then they aren’t really a danger to others, now, are they?”
What’s a danger to another, and where’s the ‘too much danger’ line drawn? You didn’t answer that, I don’t think, or how you’d measure such a line, either. That something will still occur is obvious, it isn’t an all or nothing thing. This ‘danger’ is a sliding scale, and frankly the word itself used here is ridiculous. It isn’t danger as people understand the word but more of things, like in every other job, that must be worked around, with and through. Clients are people, not some faulty car part that’ll catch fire if not watched properly while on the job. Working with people isn’t some unholy burden to bear. Your posts here remind me of the ‘poor beleagured home health aids, working with those vicious, abusive disabled people’. It’s akin to the “My God, glad I don’t have to deal with ’em, what a horrifying experience’ trope. It isn’t the clients that are the problem. I see a similar attitude with regards to vision and ‘help’ recieved. The stresses are ridiculous, as are the expectations and having to depend on others for things and having people expect you to be so damn – grateful – that you wouldn’t dream of pointing something out or sniping when they screw up, again and again and again. And people do screw up. Often repeatedly. That’s not counting the staff that’s there for a power trip, or the staff that thinks They Know Best, Damn the Torpedoes. On the other side of the fence you hear people complain and make snide comments, talk down and demand that because you can’t do x there’s no way you should be able to do y. There’s not an ice cubes chance in hell that mindset and behavior doesn’t bleed over when able bodied people are caregivers. This “Danger, Will Robinson, Danger!” is a damaging overstatement at its very – best -.
Abuse has a specific meaning, and degrading that meaning by using it to refer to “asshole behavior” or whatever is pretty damn dangerous.
Too bad. Those words in a random blog entry (not even a news article, as far as I can see) mean nothing, and I don’t know why you’d think they did. We have one supposed example of an event that led to this, namely the patient saying she’d report nurses for not following the doctor’s instructions. Very likely she had reason. If not, the literal thinking people have mentioned could account for it.
What little light said.
Also, thanks all, for politely disregarding my comment. So, “nasty people” can’t even get scare quotes, eh?
“This “Danger, Will Robinson, Danger!” is a damaging overstatement at its very – best -.”
Especially when you say abuse (by which I originally thought you meant pain caused by others, but apparently not) isn’t accidentally getting hit or the like. Since abuse isn’t compiled of bodily or mental harm here and is apparently maliciously inclined attempts to control others, you’d think more attention would be paid to the health aids themselves. Do you know what backround checks and tests I had to take to get hired for a home health aid?
None.
I still find that worrying, that anyone could be hired , at least in pennsylvania last I knew, for such a position with no character references, training or interviews at all. All I had to do was fill out a bit of paperwork and had the family head sign it. That’s it. Jane Doe off the st. could get the same job, only she wouldn’t know what the hell she was doing, especially with no prior experience, and – she’d be in control -. You want bodily or verbal abuse, there you go, ripe for the picking. I’m willing to bet there’s quite a bit of it camped out next to ignorance and the ‘easy cash job’ idea, of which I have seen stated.
Because I can forget my stress at the end of the day, and never ever see the developer in person. I’m well-aware that compared with people who deal with in-person services, I have it easy – my job is NOT as stressful.
It’s not the disabled specifically. Anyone requiring care of some sort.
And what was said about assholish behavior vs abusive behavior. I meant having to deal with assholish behavior.
My ‘analogy’ if I should call it that, was about assholish behavior and stress levels. Not about which is worst. Personally, I deal badly with high levels of stress. So a more stressful job, even with super-friendly people, would be hard on me. I’m not implying the disabled are inherently worst than the general population.
Note: Being trans qualifies as a disability in some places. So, I’d be a bit stupid to shoot myself in the foot. Sorry though, if I sounded like I was trivializing it.
You were one of the several people who jumped to the conclusion that this woman’s disability status made her more prone to be an abuser. It does not matter whether or not you believe this in your heart of hearts. Words mean things. And have consequences. And you have contributed to the ableism on this thread whether you meant to or not.
@Schala
Whenever I see a line like that, I always think of Daffy Duck at his best:
“I’m not like other people – I can’t stand pain. It hurts me.”
Err what??
No, I meant all jobs have to deal with BS and assholish behavior and that I don’t expect any job to be easy. I’ve done babysitting (with my own brothers) for some years. I don’t really know about other direct-care services because I’ve not done them – but I do know they are more stressful (than say, videogame tester), even if no one is abusive. And yes, you’re prone to have to deal with assholish behavior one day or another (in any job).
I’ve had to deal with outright abusive behavior in all my previous jobs, including a death threat, on the job, and a punch to my gut unprovoked, during working hours. My stress levels are glad that’s behind me. This was warehouse work, and co-workers.
I don’t think someone disabled is more prone to be abusive, verbally or otherwise, than anyone else.
You read into what I said that what I wrote as “BS” was abuse. I meant it (and clarified such) in my next post that it meant assholish behavior (and not abusive behavior). Because another poster made the distinction, I was able to choose the best-suited meaning, but I never meant BS to include abuse.
Much like I don’t expect anyone, in warehousing or elsewhere, to have to deal with death threats on the job.
BS = being selfish, an asshole, having to deal with someone sometimes doing that -> happens everywhere, but especially where you have no choice but to interact with the client (they are physically there).
Abuse = insulting, destroying (your) property, harming physically, and any other thing that falls under some crime against a person.
I may have sounded trivializing, and I excuse myself for the wording of post #15, but I did NOT say they were abusers, or that this was tied to their disability status.
Want to be a Top 500 company CEO? Be my guest. But I’m not going there, even with all the advantages it entails. Even if I had the leadership qualities required for such.
Not all people deal with the same things in the same way…and some people deal with bad stuff (anything bad) cause they don’t have a choice (too poor, unhireable for discrimination purposes, disease). MtFs going in the military might sometime do it totally out of choice. But many do it to make cash. Personally, having someone yelling Sir in my ears all the time would make me snap and want to kill said person, much more than the enemy country.
Schala: This post was not about you personally. It was about the treatment of a disabled woman.
Schala, how would you be shooting yourself in the foot? Trans may
qualify for disability in the DSM, but damned if I’ve never heard of
any o’the board considering it disabling in and of itself. Depression
et cetera that may go with it, sure – but not being trans, that’s
crap.
Now, repugnant, that I’ve heard such higher-ups saying, which is why they stuck it in the dsm in the first place. But trans hindering in and of itself by virtue of its’ existence the same way as mental or physical stuff – no. It’s unlikely I’ll be hired for certain jobs because I don’t look gender-congruent. That’s not the same as not being able to, say, read the keys of a cash register or the regular font on a computer screen without accessiblity accomidations. One is society’s prejudiced biases – the other is society’s bias + actual personal limitations. But as KH said, the article was about a client and what seems to be faulty health aids.
Schala – one person’s crappy experience is not another’s. My experience as a disabled person is nothing like your experience of being trans, even though we are both discriminated against, and when you’re talking about a specific instance of discrimination disabled people experience a lot, and trans people rarely (accessing adequate, life-sustaining health services, for example; yes, I know trans people are treated poorly by medical professionals, but neither in the same manner or scale) the comparison is not appropriate.
Likewise, my experiences as a retail worker and my experiences helping people with developmental deficits were both stressful, but their contexts were utterly different–nobody will starve, injure themselves, or die if I don’t sell them a My Little Pony. Trying to understand someone else’s experience by saying “It’s just like this different thing I experience” may seem helpful to you or others, but in the end it just clouds the issue. Also, especially if the scale is different (dealing with a frustrated customer for <20 mins vs. dealing with a disabled person who may lack the ability not to hurt you in some fashion, for extended periods) it ends up minimizing peoples’ real experiences.
[And, if someone actually had some very rare disability that has yet to actually be defined that actually caused them to be abusive to other people, then they should be locked up for the safety of society. Yes, they should be given care within that facility, just as anyone who is deemed a danger to society would be. But, if they really are unable to control their abusive behaviors, then they should be treated just as anyone else who is unable to control those behaviors would be.]
Tourette’s Syndrome.
So, bean, are you suggesting that this child be locked away forever because she has a condition that causes vocalizations that she cannot control? What the hell? What’s next, locking people away forever because they are “too expensive” or “too inconvenient” to care for? Why not just get rid of us, since we’re such a strain on society?
Also, in general to many of the commenters, I have Asperger’s, and I resent like hell the implication that Asperger’s = asshole. That too is ableist and indicates that you have no conception that some people’s brains operate differently than the socially-sanctioned “norm”.
If someone is not capable of treating home health care workers of at least the minimum of respect (meaning no verbal or physical abuse), then yes, they should be denied home health care workers.
And even if the woman referenced in the OP was nasty, how exactly does that justify a death sentence or life imprisonment (which is what institutionalization is)? Disproportionate response much?
I hate to pull a “the dictionary defines abuse as …” but the dictionary does not define abuse this way. The dominant meaning of rape is unwanted sexual intercourse/contact, and other uses of rape are basically metaphors extending from that broadly accepted definition. Abuse gets used in a much broader way by the general population. Perhaps we would be served by moving away from that broader definition and reserving it for a pattern of behavior in a relationship that is used to gain and maintain power and control, but we’re not there yet, and I can’t assume that’s what people who don’t work in domestic violence advocacy mean when they talk about verbal abuse.
I think there’s a reason I’m not the only person on this thread to react with a Huh? to the idea that no health care worker should ever put up with abuse. And it’s not because we think it’s okay for health care workers to be abused in the sense that I now understand you meant it.
The power dynamic in a relationship between a caregiver and patient/client is really … complicated. Health care workers may be vulnerable as people with limited education/job options, and patients/clients may be physically vulnerable to their caregivers. And the health care workers usually don’t work directly for the client, but for a private agency or health department, so it’s not exactly like an employer/employee relationship. Most of the physical stuff my husband experienced was deliberate, not accidental. The guy who kicked him in the nuts often acted out violently against other workers and other residents. But you can’t say that there was really a power dynamic in play. He was just a person with poor control of his emotions who acted out a lot.
I think the assumption she might have been at least difficult is hard to avoid not because of her disability status but because she went through some series of caregivers. Presumably, if she were sunshine and light, caregivers wouldn’t have refused to attend to her and the agencies wouldn’t have withdrawn care. She may have had legitimate complaints – I’m not saying she doesn’t – but that she went through a series of caregivers, all of whom she had a problem with, might indicate that wasn’t the only issue. I think people turned to the disability issue because they want a reason for the agencies not to withhold care – “It’s not her fault.” My own view is that even if it was “her fault,” even if she just has an unpleasant personality, they should have found some way to provide care.
“Disability” covers such a broad range of medical/mental/physical/emotional issues that it is impossible to generalize. Disabilities don’t cause people to be abusive, but no, I don’t have the same expectations of behavior from someone who has schizophrenia that doesn’t respond to medication, or someone who has severe developmental disabilities, as I do from someone who doesn’t. (And I use those examples because in my own life, I’ve had a lot more interaction with people with mental illness and developmental disabilities (including relatives and close friends) than I have with autism-spectrum disorders. I don’t tend to think of Asperger’s as being on the same level, but I’m not in a good position to talk about that.) Is that ableist? That’s an honest question. I don’t want to be ableist, but I’m unclear what the non-ableist position on this is. That they should withhold care because she’s still responsible for her behavior? Or is ableist to not take at face value her complaints?
Despite getting kicked in the nuts every once in a while, the only part of his job that really stressed my husband out was dealing with the administration. He enjoyed most of the people he worked with/for. The main reason he didn’t stay in that line of work is that he found it so emotionally difficult to leave everyone behind when we moved away that he didn’t want to go into it again, get emotionally attached again, and then leave again.
Granted, it’s not for everyone, but what is?
For the record, I didn’t meant to equate disability and being trans. I’m saying some people/organizations/governments consider it such. I heard it was even possible to get disability benefits (on welfare) if a doctor diagnosed it in the right way (in my province). Considering I stayed on welfare for three years, I tried, but my doc wasn’t too competent, so I was outright refused. I don’t think I would have felt ashamed of legally abusing the system though, considering how it legally abuses most of us (us being no particular category).
I was refused unemployment benefits when I left my job due to moving. I went from being 15 minutes away on a bicycle, to 90 minutes away using busses and metros. I also was 3 months without any sort of income at all. A 3 hours commute/day, plus the fees of such (150$ a month added) make it rather unappealing to keep working there. Though I’ll admit, I was seeking an excuse to quit. Too bad I wasn’t fired…
I didn’t want to transition on the job, especially not one where I had been abused in the past, without them even knowing of it (my transition stuff).
By the way, I fit the DSM criteria for Asperger Syndrome, and it surfaced before I became aware that some of my issues were about being trans. I’m highly functional, though unlikely to be at ease where I have to take care of myself 100% all the time. Ergo: I couldn’t live alone.
Which is relevant in any fashion to this conversation… how?
trans people rarely (accessing adequate, life-sustaining health services, for example; yes, I know trans people are treated poorly by medical professionals, but neither in the same manner or scale)
Oh, good. Now I get to respond to transphobia, too (yes, I’m trans).
Tell that to Tyra Hunter. She *died* because EMTs and emergency room doctors refused to treat her after she was in a serious car accident. Tell that to Robert Eads, who died after two dozen doctors refused to treat his ovarian cancer. Tell that to every trans* person who commits suicide when the medical profession refuses them the hormones or surgery that they need.
This is a useful definition, considering how frequently I’ve read accounts by people with disabilities describing how care workers have behaved abusively toward their clients.
This isn’t a tu quoque, either. This is something that is a real and serious problem for a lot of people who need home care. There’s a reason pages like this are written.
Amanda Baggs and Elizabeth McClung have both written at length about abuse they’ve experienced from home care workers and their agencies. When it comes to a situation where one person is going to have power over another, I find it hard to sympathize with the person who has the power. While it is possible for people with disabilities to be abusive, I’m not going to give the benefit of the doubt to the caregivers.
To someone implying I equated it. Simply it was a reply to that poster.
Specifically A.W. at #44
Here’s a link to a youtube video of Minna M-K speaking about some of her experiences, on Jan. 9, 2009. It runs about 9 minutes long.
http://www.sudburystar.com/ArticleDisplay.aspx?e=1398624&auth=
The newspaper/blog articles that I’ve been able to access have been frustratingly lacking in information that might give us a bit more context for what happened or didn’t happen.
Minna speaks mainly about her experience with being asked to sign a contract with the agency that’s providing care that would require her to never contact the College of Nurses of Ontario, her refusal to do so and steps being taken to re-institute care.
I hope this additional information from the health care consumer herself will be of some help to those following this thread.
chingona: I’m going to respond in a more general way to your question, with the caveat that your posts were not among the posts that I was particularly…horrified by.
Ableist trends on this thread that I’ve observed:
*The assumption that people on the autism spectrum are likely to be assholes–if not downright abusive.
*The conflation disorders on the autism spectrum with mental illness. Both can be disabling, but they shouldn’t be confused as being the same thing.
*The assumption that people with mental illnesses are likely to be assholes–if not downright abusive.
*The author of the OP refusing to even acknowledge my request to put “nasty people” in scare quotes.
*The conflation of disabled experiences with trans experiences (whether intended or not).
*The assumption (of many commenters) that health care workers are inherently more trustworthy than people with disabilities–and that their voices should be privileged over those of people with disabilities (even when complaints of abuse are made).
*Comments describing (or alluding to) the patient’s disability as “bad social skills” or an “unpleasant personality.”
*Disavowal of the patient’s physical disability, along with the assumption (from some) that she should simply be left to die if she makes people uncomfortable/has difficulty conforming to expected norms.
*The assumption that people with disabilities are responsible (in a systematic way) for abuses against healthcare workers even though people with disabilities have relatively less power in these relationships.
*The tendency of several folks who are not disabled to jump on the “that reminds me of me!” bandwagon and appropriate our experiences.
I’m getting tired, but there you have it, for starters.
I do want to say, though, Lis, in response to this comment:
This is simple not true. And it reeks of transphobia. Why don’t you start by googling Tyra Hunter and educating yourself about what happened to her before making callous and ignorant comments?
Schala’s comments piss me off too, but they don’t excuse this kind of transphobia.
And, chingona, it’s not about getting the words right so you don’t accidentally offend anyone. It’s about listening when people point out that the words you use (figurative you, not you personally) have hurt them and being willing to say, “Okay, my bad, I’ll cut it out.” I think we’ve discussed this before, once or twice.
Kristin – Tyra Hunter was who I was thinking of when I put that parenthetical in, so I guess that was a double-whammy of bad expression and ignorance on my part. I was trying to acknowledge that trans people have been discriminated against in this fashion, but I meant “in manner or scale” meaning the raw numbers of people treated badly by the medical profession, when that sentence read plainly means I didn’t think or know that trans people have died due to discrimination by medical practitioners.
Which was an assholish thing of me to do. I’m sorry. I’ll try not to make that mistake again.
I would never agree to such a thing if I was in such a position. It’s like if I was required to sign a waiver before seeing a doctor that said I would never sue for any possible mistreatment I might get. What’s the use of having those protections against power-abuse if people require you to waive them?
I can understand signing a waiver against injury in extreme sports, in fighting sports, heck, in american football…but I can’t fathom signing such a document with a health professional except under one circumstance. That circumstance being surgery where my life is at risk (one of which I want to undertake someday).
From what I know, of myself, other people I know with AS, and the diagnosis, is that being “socially awkward” (if only in childhood) is a requirement. I guess it could fall in the “bad social skills” category, but this conflates too much with inappropriate response to people. It conflates “hard to relate to personally” with “will insult you all the time”.
I may be unable to make friends (in person). But I’m usually pretty polite. I “don’t get hints”, much like Daran said some months ago, though I have enough experience to read hatred (or even dislike) in someone as far as towards me. I can’t read like or love though. I’m extremely emotional inwardly, but show so little of it outwardly.
I’m not sure which is due to personality quirks, AS, transness, AIS, or having dual personalities, or destiny or anything else. I do know that many of my social difficulties are shared by others with AS though.
Lis: I don’t know that either of us have the statistics at hand to be able to make an accurate comparison about “manner and scale.” Nor am I sure what interests it serves, or why it’s important to establish that “we” are more oppressed by the medical industry than “they” are. Both groups are oppressed, certainly, in ways that are context specific.
What I did not like was the statement indicating that being trans is exactly the same as being disabled (which I see now that Schala has rescinded, though it very definitely sounded that way.). But I don’t think that means we need to start making claims about who gets the worst shit from the medical profession.
Kristin: you’re right. Nobody actually wins the oppression olympics. Nor should anybody actually want to, I think.
At the end of it all, I almost just can’t wrap my head around somebody’s right to life being held hostage on a condition of good behaviour. Fully understanding it would make me either too enraged, or too sad, and I don’t have the energy to let myself feel either–so I’m picking at nits around the edge of it, because the reality is too hard to really think about.
I don’t think there has been any study on this. The raw numbers of trans is incredibly underestimated by psychiatric/medical authorities by nearly two figures. They say it’s 1/11k (MtF) and 1/30k (FtM). It’s probably closer to 1/500~1000 (both sides).
Though its more common knowledge that disabled people will be abused because of helplessness to prevent it (either physically or otherwise).
It would be interesting to get a study on the number of mistreated trans people by the medical profession. Not for comparison’s sake, but for awareness’s sake. It probably varies from country to country.
Is there a study on the number of mistreated disabled people? It might be interesting to raise awareness about it as well.
And I nearly forgot intersex people. They’re almost systematically mistreated at a moment or another in their life. Their sex can be invalidated (telling a CAIS girl “You’re really a man”…like in a Dr House episode), surgery can be performed without consent (even when adult!), hormonal treatment is at the discretion of the doctor, and without the patient having a say, in many cases. I have a friend who’s been seriously mistreated by doctors because of her condition.
These issues are often forgotten when the government gets a budget out “for minorities”. Or for studies. Their problems sometimes waived as “minor concerns” (trans, Ontario 1998), or swept under the carpet (intersex, nearly everywhere). I don’t know enough about disabled people to know how the government acts regarding them, but I don’t expect it to be much better.
Yeah. Once or twice.
I appreciate your response.
Since “unpleasant personality” was my phrase, I just want to be really clear on my position here. I don’t think Asperger’s gives someone an unpleasant personality. And I wasn’t trying to say that most people receiving care are assholes or abusive or anything like that. Some of them are – disability doesn’t have some special ennobling effect on people – but I don’t think that they are MORE likely to behave badly. What I was trying to say is that regardless of the facts of this case – even if the dispute with her caregiver resulted not from her disability but from nothing more significant than her being unpleasant – I would always err on the side of providing care, especially if that care is life-sustaining, as it appears to be in this case.
Thanks for the link. I wouldn’t have wanted to sign something like that either.
chingona:
I don’t have AS. I am, however, a woman who is disabled. I think that a major problem for people with AS is precisely that some of the symptoms can *seem* to other people like simply “behaving badly.” This contributes to discrimination against people on the autism spectrum (Ill will is presumed to motivate people who are simply not exactly like the idealized norm.), and this particular case is a pretty clear example of that. This woman’s communication is presumed (by people all over the thread) to be “assholish” without any actual evidence that this is the case. I agree with you that people with disabilities (and members of other oppressed groups) are not exempt from being assholes on account of their oppressed status. However, I think we need to be *really* careful about presuming this of people who have AS in particular–because this is a major way in which people on the spectrum are often oppressed/denied care/mistreated/abused.
And, chingona, even your use of “unpleasant personality” has a particular connotation when used in speculation about someone with AS. Just, you know… Be aware.
Lis: Yeah, I hear you. As a person with a life-threatening chronic illness and a less-than-perfectly-sweet personality, yeah. This is more than a little worrisome. And I can’t get over the fact that people are rationalizing this kind of treatment on a progressive/feminist blog.
Fair enough. My bad.
“The author of the OP refusing to even acknowledge my request to put “nasty people” in scare quotes.”
The author of this post usually doesn’t read comments here. His comments are scooped in via RSS feed. It’s not fair to put his failing to read your comment in the category of ableism.
Um… Well, he might do well to read the comments made by disabled people on his Horrific Story about a Token Disabled Person post. Sorry… These things have structural implications. I’m not exactly part of the club over here, but damn…
Or, well, in other words… I should have just said: You really don’t get to define for me what counts as ableism and what doesn’t. You don’t get to decide which comments have ableist connotations and/or consequences and which don’t. The fact that the writer of the OP didn’t think–on his own accord–about the problematic nature of his language is troubling to me. I can’t really get into a conversation about whether or not–and how often–he reads these comments. And, yeah, it is ableist to go around ironically referring to people with disabilities as “nasty people” and to ignore criticisms of this language. Fine, so he may be busy and inattentive to comments? Not the point.
Is it ableist of him to have made the title in the first place? Sure — make that argument. This isn’t the first time that a title of his has caused some pretty major offense here.
But it’s not ableist of him not to read your comment, when he doesn’t read any of them. These posts are scooped in by RSS feed.
Kirstin – I’m providing some context about the way Jack’s posts work so you know, because you said you’re new not because I necessarily think it counteracts your points.
The blog and the bullet, the blog where these posts are cross-posted on an rss feed, is entirely a link blog. The posts written for that blog (which are cross-posted to Alas) each have a link an extract and a title which usually attempts to sumurise what’s being said in teh linked post . If you read the post Jack linked to I think the title does reflect the argument made in that post:
Having read the post he was linking to, I don’t think he was ironically using the term ‘nasty people’ to refer to disabled people, but summarising the argument of the post he was linking to. But, of course, not everyone is going to read the post being linked to.
I do think this is a very important issue. As a unionist, I find a lot of the way health care workers are discussed on some of the disability blogs I read very disturbing. I have huge problems with much of what I just quoted, for example.
But, when my best friend was in hospital I got massively angry at some of the Nurses and care workers (and doctors, but that’s a completely different dynamic in most ways) treated her.
The power dynamics between care workers and the people they care for are often very complicated. If the person being cared for has right to refuse a particular carer then that can basically be hiring and firing power, but at the same time the carer can have power of life and death (as well as many smaller, but just as vital powers).
I think it’s really easy (as in this thread) to pit the rights of disabled people and care workers against each other. I also think that’s a really bad move. The problems in the health services aren’t individual (about individual bad people needing care, or individual bad workers), but structural. And on a structural level I don’t think there’s a conflict of interests.
I may try to write a post about this, because I’ve been thinking about it for some time.
GallingGalla – are you seriously going to use Tourette’s as some kind of defense for verbal abuse? Maybe you’re the one that needs more education on Tourettes. First, tourettes is relatively rare, and even rarer still is the specific type of Tourettes (Coprolaliathat) would cause someone to involuntarily swear or use culturally offensive words. Then, within that very small minority of a minority, you might just possibly find one person that will say things that could even come close to verging on verbal abuse. I mean, in the vast majority of cases, swearing and even using offensive words is not going to be considered verbal abuse by anyone. I mean, talk about grasping at straws.
And the whole “slippery slope” and bright line argument is even more ridiculous than when those arguments are used in porn debates. Seriously, at least in those cases you can get “hypothetical” and “theoretical.”
As for the definition of abuse — well, I apologize. I forgot that this is no longer a feminist blog. Yes, by all means, let’s also do away with that feminist tenet.
Kristen, perhaps you could show some exact quotes to provide examples of exactly what you are assuming is being said in this thread. Because, with only a few exceptions, I don’t see anyone saying what you seem to think they’re saying. I mean, seriously, even one example of anyone saying that health care workers are “inherently more trustworthy” and that their voices should be privileged. It’s very difficult to have a discussion with someone who seems to be arguing against arguments never made.
Reading some of these comments is making me sick. Suppose a man has been subjecting his wife to years of emotional abuse, and the situation is unusually clear-cut and the judiciary unusually sympathetic, and he faces trial for his actions. He’s found guilty and convicted, there’s really no possible cause for doubt, he’s an abuser. Would you sentence him to being tied to a chair and left in a locked room to starve to death? Would you want to live in a society where that was a standard form of punishment?
Whether you are a feminist who cares about protecting women from abuse, or an anti-capitalist who cares about the rights of low paid workers, or any other kind of decent human being for that matter, you should consider this question. If it’s inhumane to sentence a definitely abusive able-bodied man to death, how can you even be debating whether that’s the appropriate response to a situation where a woman with major disabilities has been described as “verbally abusive” by some random blogger?
Standing up for the victims of abuse is one thing. Condemning an alleged “abuser” to starve to death without even giving her a chance to defend herself is utterly shameful. Calling that attitude “feminism” is a travesty. It’s pure, vicious ableism, grudgingly allowing a person with disabilities to live if she’s a perfect angel of light, but if she has any personal flaws at all, she loses her right to basic care? That’s disgusting.
Word.
Bean: I’ve mostly been ignoring you because I don’t really think your hateful rhetoric merits any response whatsoever. But since you address me directly…
I was speaking about assumptions that seem to be implicit in a lot of thinking all over this thread–not always about exact word choice. I’m afraid I can’t be arsed to scour over your hate speech and pick out the problematic elements. Not my job to teach you Ableism 101. Go educate your damn self if you’re interested. You’re not here in good faith.
“Abuse is defined as the systematic pattern of behaviors in a relationship that are used to gain and/or maintain power and control over another.”
I find it very hard to believe that this woman was in a position of power over her carers.
“Verbal abuse” is often used to just mean “insults.” That’s an incorrect usage, but it’s common in many newspapers, conversations and blogs.
All we know for definite is that Ms. Mettinen-Kekalainen complained that her nurses weren’t following her doctor’s orders. She may have rightly accused them of deliberately harming her. She may have accused them of deliberately harming her when they were accidentally harming her. She may have accused them of deliberately harming her when they were not harming her at all. She may have rightly accused them of accidentally harming her. She may have wrongly accused them of accidentally harming her.
She may also have abused the staff. HOWEVER, I’ve read a lot of articles on the subject and I’ve not seen the agency say anything other than “she complained that the nurses weren’t following her doctor’s orders.” And it’s more than possible that her complaints were true. Humans make mistakes. Home care workers are overworked, overstressed and underpaid, so they make more mistakes than a lot of other humans.
I think the most probable thing is that the agency didn’t like her complaining. The next most probable thing is that she was a rude jerk (as opposed to actually abusive) or unintentionally did something that seemed like deliberate rudeness because, as a person with AS, she can’t pick up on non-verbal social cues. I think it’s very unlikely that she was CAPABLE of abusing them, because they were in a position of power over her. It is possible to abuse carers, to use their guilt about being “healthy” and “needed” to get power over them. But it’s MUCH easier for a carer to abuse a diabled person (especially when that person disabilities are BOTH cognitive AND physical.)
People who have actually met her don’t seem to think she’s an abusive person. See here and here. I know abusers CAN hide that facet of themselves, but the fact that people who know her seem to like her, plus the fact she was in a position of very little power makes me think that she had very little chance of either abusing or wanting to abuse them.
EVEN IF SHE WAS DELIBERATELY ABUSING THEM (which I find unlikely) I don’t believe in capital punishment for anything (especially crimes other than murder, and whatever she’s done, she hasn’t killed anyone). And even if I did believe in capital punishment, I would want some more humane form of execution than leaving her to die in her unchanged diaper.
No one is saying that abuse as you define it is some no-big-deal, whatever, thing. No one is saying that. Given that four or five people all read you the same way I did, and several of those people actually know something about what it’s like to work in direct care, I really don’t think the problem is that we’re insufficiently feminist.
I would like to read a post on that. I think the thing that can further complicate the relationship is that it often is not a direct one. It’s a direct one during the time the care worker is with the client, but the care worker often doesn’t work for the client. They work for a third-party agency or institution. And similarly, if the client wants a new worker, they’ll have to go through the agency. How the agency mediates all those relationships, how seriously they take the interests of everyone concerned, has a lot to do with the final shape of those relationships.
The choice usually isn’t “suck it up or die,” it’s usually “suck it up or get institutionalized care.” Which is arguably just as bad, but for accuracy’s sake it may be relevant.
Generally speaking, people who have flaws that they choose not to control and/or who are perceived as being intentionally difficult to deal with find that they have trouble getting help. Nobody wants to work with them.
We make two exceptions for people with disabilities: First, by focusing on intent to be flawed and/or difficult, we create an exception for those who have less or no control over those traits. Second we try (and usually fail) to weight the effect of denial; e.g., saying “screw you you’re on your own” has a different effect on someone who cannot feed themself.
We need to maintain the intent aspect of disability thinking, I believe, because people with disabilities run the gamut of personalities and we need to be able to distinguish between people we like and those we don’t, people who act well and those who do not, etc.
But this in some respects is the root of a lot of conflict. It just occurred to me as I’m typing this that the necessary focus on intent is in many ways at odds with a lot of writing w/r/t feminism. Normally here, we see a lot of arguments that deliberately move beyond intent, and or which deliberately do not allow intent as an excuse.
So w/r/t feminism, something is evaluated as sexist, or abusive, or patriarchal, whether or not the perpetrator intended it to be so. But w/r/t any disability which can or does affect someone’s behavior, you have to consider intent, because otherwise you’re ignoring the disability. It’s no doubt atht the two spheres conflict.
Ok, I’ve just posted a really comment that didn’t appaera, and something I posted after that has appeared (and I’m sure I kept the rules in both comments), so I’m assuming the spam thing ate it. Basically:
“Verbal abuse” as people have pointed out, is often used as shorthand for “being rude”. It seems far more probable that this woman was just being rude, or unintentionally doing things interpreted as rude, than abusing them, because althoug carees can abuse carers, generally the carer is the one with the most power. I don’t think Ms. M-K was in a position to systematically get power.
Sailorman:
I was actually thinking along different lines when it comes to feminism. In feminism, we are perfectly comfortable with taking people to task who critique us and refuse to engage because they find our tone to be problematic. We are adamant that we often have a right to be angry, and we will not be dismissed because our tone makes some people uncomfortable. We will not be forced into “gender conforming” behavior that labels our anger inappropriate/rude/”crazy”/unstable.
And yet… Most folks here are not willing to make this allowance when it comes to disability. We don’t get to be angry. If we do become angry, our anger is usually attributed to our disability (The equivalent of: “You must be angry because you have PMS. You couldn’t possibly have a legitimate explanation for your anger.”)> We do have to conform to the “super crip” narrative and/or be “angels of light” as Individ-ewe-al suggests–or risk losing access to basic life-saving healthcare. We have to be nice and polite and kind, even when we are met in progressive circles by people who think the value of our lives are up for debate and discussion. Not only that, but we are made responsible for the structural difficulties that healthcare providers face in the workforce, even though we personally have very little power w/r/t the people who provide our care. When we point out examples of abuse at the hands of healthcare providers, we are all too often blamed for it. Our stories get twisted around such that we are all too often called the “abusers” ourselves. At best, there is an implicit assumption that we must have been “asking for it.”
Sailorman accurately identifies the problem here, the problem circling around “choice” and “intent.”
I have a friend who has been diagnosed as bi-polar. His condition is only imperfectly controlled by medication, as is often the case. Periodically he goes into “rages,” during which he damages property, gets in fights, and generally becomes impossible to deal with. “No one wants to work with him” indeed.
The considerable problems presented by this situation are not improved by inserting morality.
My friend “chooses not to control” his behavior….except that from what I’ve seen, he doesn’t really have “choices” here. He has no more control over these rages than a cancer patient has over the progress of the malignancy. He’s not “intentionally” difficult to deal with. He’s sick, through no fault of his own.
Is it “ableist” of me to point this out? I must admit that whoever thinks that lost me at the turn.
Now, none of these reflections solves the considerable problems confronted by anyone who is attempting to help this guy. As someone above pointed out, some of these problems arise from the current condition of our health care “system,” which mandates that such people are ill-paid, and some of them may be as a result ill-qualified for their jobs. I’m not trying to solve this problem here, just to point out that it does seem rather harsh to make a mental condition over which the person has no choice a death sentence.
I don’t know that the woman in the original story is mentally ill in this way. I’ve never met her and know very little about her. But it is at least possible, given what we do know, that her “control” over her behavior may be somewhat compromised by neurological conditions over which she has no control.
Is it “ableist” of me to point this out? I must admit that whoever thinks that lost me at the turn.
Who thought that? I think it’s these kinds of assumptions that we were specifically trying to combat.
That said… I would really prefer that PWD not be assumed to have *no personal agency* either. I don’t think you were doing that. But it happens.
And there’s no indication that mental illness is at issue here, so I’m not sure why everyone keeps comparing this to their friend who is mentally ill.
I think two things are going on here.
I think a lot of people think autism-spectrum disorders are a form of mental illness. I don’t think they think this out of malice. I think it’s a hold-over from a time when psychological explanations for autism were more common. As I’m typing this, I’m realizing I don’t actually know the right category to place it in. I usually just see them refered to as autism-spectrum disorders.
The other thing that keeps going on is we have one aspect of this argument that says disabilities don’t cause people to be abusive or rude or whatever, and people are still responsible for their behavior. But mental illness is a form of disability, and while I wouldn’t consider it an excuse or justification for abusive behavior, mental illness can seriously distort how someone interacts with other people. So when someone hears “There’s no excuse for abusive behavior,” the first thing they think of is someone they know who is mentally ill and perhaps isn’t really responsible – in the same sense that someone who isn’t mentally ill is – for his or her behavior if their condition isn’t controlled through medication.
So I think the mental illness thing keeps coming up as part of the broader discussion about under what conditions it would be reasonable to withhold care (or only offer care in an institutional setting), not so much because we have any indication Minna M-K is mentally ill.
Minna M-K’s need for in-home care seems to be related to her amyotrophic lateral sclerosis, not her AS. We don’t really know if her AS has anything to do with this situation at all – it might have zero to do with it – but it’s possible that her AS affects how her caregivers perceive her behavior or how her complaints were received. In that sense, I think the ethical considerations are similar to whether to provide in-home care to someone who has bi-polar disorder and also has … cancer, let’s say. Even if the particulars are different.
Folks classify a/s disorders as mental illness because “people with mental illness” is commonly considered to be synonymous with “people who don’t have full control over their actions.”
Thank you, chingona.
I know quite a lot about AS, since my husband, three of my four children and one of my three grandchildren are Aspies. This woman’s AS may not just affect how her caregivers “perceive her behavior.” It may also affect how she behaves.
Asperger Syndrome, and autism in general, are right now sort of garbage-can diagnoses, in that many conditions people don’t know what to do with are thrown in there. The result is that “Aspies” differ quite a lot amongst themselves, and they may in fact not actually be affected by the same condition at all.
Some people diagnosed with Asperger Syndrome – not all – can be or seem very insensitive to the people around them. Some of them can be quite abusive towards the people around them, in ways that really do not serve their interests, and in ways that seem connected to their neurological condition.
Are the Aspies who behave this way necessarily morally defective? Or is it possible that this syndrome, which so deeply affects so many ways that people function, may be responsible for this behavior? One of my sons is quite insensitive to other people, although I know, because I know him, that he actually cares deeply about some of the people around him, and about his family. His neurology interferes with his functioning.
I am not assuming that the woman in the article exhibits these same features, but it is at least possible. I don’t see why it’s “ableist” to at least raise the issue.
That depends on what you mean by “mental illness.” My family does not allow me to refer to AS as a mental illness. (I am also not allowed to use the word “normal.”) AS can present as mental illness. Does that work?
“Some people diagnosed with Asperger Syndrome – not all – can be or seem very insensitive to the people around them. Some of them can be quite abusive towards the people around them, in ways that really do not serve their interests, and in ways that seem connected to their neurological condition.”
That depends on how you define “abusive”. If by “abusive” you mean “having a meltdown and lashing out physically and/or verbally, with potentially very harmful consequences for others” then yes, AS can in SOME cases cause abusive behaviour. If you class as abusive “an extreme lack of tact which leads to hurting people emotionally” then yes, that is abusive behaviour caused by AS. But I wouldn’t call that abuse.
If we’re using the definition “the systematic pattern of behaviors in a relationship that are used to gain and/or maintain power and control over another” then that’s not an AS symptom (I base this assertion on everything I’ve ever read in books and online about the autistic spectrum, my experience of working with autisic spectrum kids, having an autistic spectrum brother and having several autistic spectrum friends.) Abuse, under that definition ( and it’s a good definition IMO) requires a level of pre-meditation which doesn’t apply to one-time (or even multiple-time) lashings out, or unintended tactlessness.
“I am not assuming that the woman in the article exhibits these same features, but it is at least possible. I don’t see why it’s “ableist” to at least raise the issue.”
It’s generally the first thing jumped on by ‘normal’ people. It isn’t so much raising the issue and putting it forth as that the great majority of people suggest it’s one of two, the other being “The woman’s deliberately abusive”. The other problems due to incompatibility, health aids or the medical establishment’s generally not discussed, and it took a bit of time here for people to bring it up, especially as, I’ve so far found, it’s much more likely happening than client’s abusing or client’s behavior being the faulty wheel when a client complains. It’s been suggested here, but it took a while, especially when it was noted that the establishment wanted her to sign a Do Not Call/Complain form.
That doesn’t make this hypothesis incorrect. Nor does it justify calling people who raise this possibility “ableist.”
We are told that this woman has two neurological conditions: AS and amyotrophic lateral sclerosis. I happen to know that a “diagnosis” of AS can be pretty much a shot in the dark, and that that diagnosis covers a multitude of quite different conditions. I don’t know as much about ALS.
It doesn’t seem much of a stretch to guess that one or both of these conditions, or perhaps the interaction between them, may affect her behavior adversely.
The whole point is, do we just write off health care for people who, for whatever reason, behave badly? Even when there are hints that this may not be just a moral failing? And then again, if people behave badly, even if it’s not their “fault,” how do we protect health care workers who are trying to help them? When does bad behavior become a crime deserving of a death sentence?
It would be nice if people would be more careful about distinguishing between this case in particular and the issue in general. Where is the evidence that Minna hurt or abused her healthcare workers in any way? To me, it honestly sounded as though the company was trying to protect itself from lawsuits above all else.
The position of healthcare workers is an important topic, but I do find the constant focus on the healthcare workers alone troubling and yes, ableist. Did anyone read the Amanda Baggs links posted here? Why do the negative experiences disabled people have with caretakers receive such comparatively little attention? And yes, I understand there are structural problems, but aren’t criticisms of individual workers/companies sometimes valid? Fact is, many caretakers are ableist, and that often is reflected in their work.
I’m also made uncomfortable by the numerous descriptions of AS from non-spectrum people. (Note that I avoid the work ‘disorder.’) Non-spectrum people don’t get to be the experts on autism, no matter how many people you know who have it. It’s very hurtful to see some of our actions labeled “abusive” and whatnot from someone who has no idea what autism feels like from the inside. Who defines ‘abuse’ from a non-neurotypical person? I’m not saying that spectrum folks are never abusive–far from it–but the way numerous posters present the issue is, if I may say so, NT-centric.
It bothers me that we have so little actual information, scarcely any specifics at all. But this scares me:
“When she was still receiving home care Mettinen-Kekalainen would tell the nurses they were not completing tasks properly and threatened to report them to the College of Nurses of Ontario”
It would help, I think, to know to what extent her complaints were justified. I can’t imagine how terrifying it would be, trying to decide whether to complain about crappy care when the result might be no care at all.
As several people have mentioned, even if she were the worst asshole in the world – which there’s no evidence for – there’s no death penalty for being an asshole. One of the problems here seems to be that it’s necessary that she have her needs taken care of, but there’s nobody in specific who is obligated to physically take care of her needs.
Word. I’ve read all the Sudbury Star articles on this, and all the “abuse” this woman is explicitly stated to have comitted is complaining about the nurses not following her doctor’s orders.
ok, and I apologise. I don’t define unintentionally hurting people as “abuse” and I was arguiong (not clearly) that anyone who defines it as “abuse” has a definition of abuse so wide that it’s almost meaningless.
When “normal” people unintentionally hurt others in “normal” ways (for example, NTs unintentionally causing autistic meltdown by making loud noise) this isn’t generally called abuse. I think it was ableist of me not to point this out. Thanks for callinf me on it.
I didn link to the Amanda Baggs thing in the comment that disappeared (I think I must have posted it wrong.) Everyone who KNOWS Miss M-K doesn’t seem to think she’s abusive or even “nasty”.
What A.W. @ 87 and Susan @ 89 said. Thank you.
Well, alrighty then. I guess that you can continue to assume what I mean (even when you’re clearly wrong), read into what I’ve said, claim I’ve said things I never said and never once be held accountable for backing up what you claim, attempting to clarify, or anything else. Yeah, that gives your arguments a lot of credibility there.
So, since nothing you claim “people in this thread” are saying was said or implied by me, nor can I see where anyone else has said most of these things, I’ll just address all of them as though you are accusing me of saying them. I mean, I have no idea what “hatred” of mine is being discussed here.
Well, I’ve been very clear all along that abuse is NOT caused by autism, or any other disability. Some people with disabilities are abusive, the vast majority are not — kind of like the population in general. In fact, I’m going to go farther, not only does AS or disabilities in general not cause people to be abusive, but it’s not an excuse for abusive behavior.
Nope, haven’t done that. Not once.
Hmmm…I haven’t actually seen anyone in this thread say anything remotely like this. I’m really not sure where you are getting this at all. This is where it really helps further the discussion to provide examples, so that either clarifications can be made or an education about how what exactly is being said is offensive. You’ve chosen to go the opposite direction.
This has been addressed multiple times.
Seriously? Where has this assumption been made in this thread? By anyone? In any way? At any time? I have read and re-read this thread, both my posts and others, and this allegation is simply untrue. I don’t know how anyone who has even the vaguest interest in listening to other people could even make this accusation.
Wow, talk about refusing to assume best intents or even give another person a chance to have a DISCUSSION. Yeah, that’s the way to persuade people to agree with you.
Again, who has said this? Where? I’m sure you do believe this has been said — but I think that’s because you’re reading through your own anger and not actually reading what’s been said.
Really? That’s what you’re reading here? I’m honestly astonished that you could even think that I’ve said anything even close to this. I have tried to be very clear here that I do NOT think the vast majority of people with disabilities are abusers. In fact, that’s one of the reasons I’ve been so adament that abuse is a choice — if disabilities created abusers (and was the cause of abusive behavior), then the majority of pwd would be defined as abusers; and it’d be just one more way that abusers would be able to shirk responsibility and accountability for their actions. Drugs and alcohol, stress, “poor anger management,” poverty, a traumatic childhood, (and more and more frequently lately) bi-polar disorder, these are all examples (not an inclusive list) of things that do NOT cause abuse, and yet abusers (and far too often general society) will blame for their abusive behaviors. But it’s a lie – a lie that abusers tell to avoid taking accountability and a lie that society tells to avoid really dealing with the issue (esp. as it relates to a larger society that condones and even encourages abuse).
Now, in my first post here, I made it clear that I did not know whether the person in question was actually abusive or not, but I was focused on the idea that home health care workers should just accept being abused as a part of their job. I have a huge problem with that concept, regardless of whether this particular Canadian woman was abusive or not. Of course this idea is generally acceptable, in the same way that most predominately women-filled jobs generally accept that the workers (read: women) should just accept their low pay and the abuse heaped on them and suck it up. This isn’t to say that health care workers can’t or are never abusive themselves. Of course that happens, far too often than most people admit to or realize (as I said, I work with many pwd, many of whom were abused by caretakers — and even more who were abused by “partners”) — and it’s appalling and disgusting and should never, ever be deemed as acceptable. There should never be an attitude that someone is “difficult” and therefore should just accept being abused. Similarly, there should never be an attitude that in order to do what one feels is meaningful in their life (helping other people) and/or scraping by to make ends meet on the piddly wages they get that they should just accept being abused. I find those attitudes equally galling.
We really need a definition of “abusive” here.
AS can cause extreme rudeness, the appearance of indifference to the feelings of other people and violent tantrums, among other things. Bi-polar disorder can cause rages and potentially damaging physical violence towards other people. Especially given the wiggle-room in both diagnoses, neither one always produces this behavior, but in both cases all this is symptomatic.
You don’t think these disorders are “an excuse” for this behavior? That would mean, if only this bi-polar guy was a better person then he could become Mr. Nice Guy in spite of his mental disorder? And so it follows that he’s to blame for all this? (That’s like saying that if this schizophrenic person would just shape up she could stop hallucinating and talk rationally. Talk about blaming the victim!)
You’re either defining “abusive” in some way that doesn’t include the behaviors I’ve listed, or you’re sort of out of tune with mental disorders. (Excuse me, AS. “Conditions.”)
Is it the thought here than no matter how disoriented or how sick someone may be, they are morally responsible to produce civilized behavior on demand? And on top of it, if they can’t manage that, well then, we’ll just deny them health care, and that will show them.
Really? Different than the one I’ve already provided? If so, you will need to explain to me why that definition is not good enough for you.
And, ftr, rude behavior or not following social norms is not abusive — as should be clear by the definition of abuse I have already provided.
That said, no, bi-polar disorder does NOT cause abusive behavior. It might exacerbate it (just as other stressors, drugs and alcohol, poverty, traumatic childhoods, etc, etc, etc would), but it does not create or cause abuse. Nope, no way, no how. Being abusive is a choice. Claiming that you can’t help it because you are bi-polar is nothing but an excuse. Choosing to no longer be abusive isn’t easy, and it takes a hell of a lot of work — but the first thing that must be done is to take responsibility for one’s own behaviors, and to remain accountable for their behaviors at all times.
Also, bpd is NOT schizophrenia. And abusive behavior is not even close to analogous to “hallucinations” or “talking rationally.” Not even in the same range.
Susan,
You seem to have missed bean’s comment where “abuse” was defined as being part of a systemic effort to assert power over another person. This definition is coming from bean’s background working with people coming out of abusive relationships. Because the behavior is conscious and deliberate, bean says it cannot be excused by a disability.
Example of abuse by bean’s definition: my great-grandmother used to rap with her cane the young woman who was her carer when she (my g-g) was upset or depressed. My g-g could do this because she lives in a rural area of a poor country, and she knew the young woman could not afford to leave the job, and that my g-g almost certainly would be able to hire someone else because people there are so desperate for work. This was part of a power relationship, and only ended once some of my g-g’s relatives became aware of this.
Example of behavior that causes emotional or physical damage but that is not abuse by bean’s definition: my cousin, when he was three, scratched my sister in the skin of her eyelid and under her eye, with a key. It bled at the time and has left a permanent (we’re assuming after almost 20 years) scar. He did that particular act on purpose, but not because of any sense of power or desire to gain power over her.
bean’s definition is at #30. And then we argued for a bit whether it was reasonable to assume that’s what people were talking about when they talk about a care recipient being “verbally abusive” to a care giver.
There is a SPECIFIC DEFINITION for verbal abuse — I didn’t just make it up. It is dangerous to start using it to mean anything you want. It demeans victims of this abuse and minimizes the very real effects of verbal abuse.
That said, verbal abuse is ALWAYS a choice. There is never any disability that would cause someone to be verbally abusive without intent. It simply doesn’t exist.