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).
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.
It’s not the same, but people with bpd can have psychotic breaks in which they hallucinate. And having hallucinations or not talking rationally is not “abusive,” but if the person having hallucinations is convinced that the other person in the room is there to do them harm and acts violently toward them or accusatory toward them, it can be scary as fuck and dangerous for the other person.
Now you’re just grasping at straws. Really.
I’m not saying you made it up, but I wish you would stop acting like I made up my definition. I’m not using it to “mean anything I want.” I was using it the way MOST PEOPLE use it, and I’ve tried to stop doing that to avoid confusion, not conflate things, but as you can see from this thread a lot of other people are continuing to have the same problem I had.
I’m not grasping at straws. These are issues that come up when you care for or live with people with certain disabilities. We’ve established that abuse by the definition of people who work in domestic violence advocacy is never acceptable and no one should ever have to put up with it, even from a client with a disability. Great for us. It’s so clear cut. Now, what do we do in all the situations that don’t qualify as abuse but still represent a danger to caregivers or a very unpleasant work environment? THESE ARE REAL ISSUES. It’s not fucking straws.
Oh. So bean would say that the behavior of a bi-polar person who struck her caregiver in the course of an illness-induced rage isn’t “abusive” because this behavior isn’t a conscious or deliberate attempt to control the caregiver. That’s a reasonable position. (It still leaves the caregiver on the hook (or in the hospital), please notice.)
OK, given that the elements “conscious” and “deliberate” are sometimes kind of hard to determine. (This is kind of a long thread, and I missed this definition.)
It isn’t clear to me that the behavior of the woman in the original story rises to the level of “abusive” under this definition, so this may be beside the point.
But even there. My bi-polar friend’s behavior often comes off as manipulative. Perhaps it is manipulative. (The word “conscious” delves into depths I’m not qualified to define.) Is this a symptom of his disease, or is it a character flaw? I don’t know. I know that a lot of bi-polar people exhibit this behavior, but perhaps they’re all bad people.
What would you do, bean, with or for a person whose behavior frightened or endangered a caregiver where the patient is truly not responsible for this behavior?
Perhaps the woman in the story is just a bad person. I’m still troubled by a health care system which uses moral criteria (you must be a good person) for determining the recipients of life-saving care, not because I think we need a lot more bad people around, but because I mistrust the system to make such a determination.
I’m also troubled by a system which puts ill-paid, perhaps ill-qualified caregivers on the line of fire.
I’m uncomfortable with the idea that filing an official complaint can be considered a form of abuse under bean’s definition. I don’t see why a client should lose the right to have every complaint heard and evaluated. And I am very suspicious that the company highlights the fact of the complaints above anything else. Did she threaten to get them fired, or just to tell their employer that she wasn’t satisfied with their work?
PWD/assistees have that option in order to protect themselves from abuse that happens very frequently in the context of a massive power differential. Ableism constructs them as abject bodies, insane personalities. And they seem to face the balance of retaliatory jeopardy, too: unemployment is terrible, but it’s not quite as bad as a life-threatening medical emergency.
And institutionalization as a solution? I don’t worry so much about the in-patient workers who would have to deal with a verbally abusive client. I worry that a client should have to accept that level of dehumanizing interference as penalty for abusive behavior, especially since they would enter the institution as a “difficult”–untrustworthy–person. And I worry that the solution to a power-over is to deprive someone of autonomy.
I’ll support Kristin on this one:
The framing of this conversation — and it sounds like, the framing of the media coverage of this incident — is, indeed, an example of what Kristin describes.
Now, it’s an interesting hypothetical. What are the rights of “nasty people?” When someone IS abusive, and they need home care, can we enforce their right to that home care? It seems that most people here have answered that question “yes,” while some are uncomfortable with the implications that has for home health care workers.
However, the incident that we’re discussing is not a hypothetical. It’s a situation in which a disabled woman has complained, been marked as verbally abusive, and is being denied home care. In order to get to the (potentially interesting) hypothetical from here, we have to listen to both the disabled woman and the care companies speaking on behalf of the home health care workers — and then we have to discard the perspective of the disabled woman, and take the companies’ word at face value. That privileges the voice of the company, and condemns the disabled woman.
I think everyone in this thread is extremely aware of the unpleasant leap between the original incident and the hypothetical that underlines the title of the post. However, this whole conversation is happening in the shadow of framing that condenses the hypothetical and the real incident, and so far we haven’t had a lot of luck getting out from under that framing.
I think Kristin is identifying a very real problem, although if she’s attributing its origin to Bean, I’d argue that she’s off-base — the problem (as Kristin has noted with her argument about quotation marks) is in the decontextualized framing of the original post.
(Which is, as has been pointed out, a not-new problem with moving Jack’s posts into this space. In his own blog, it’s pretty clear that he’s writing teasers that should not be taken as a whole. Here, they become discussion fodder, and are often strangely decontextualized in ways that skew those discussions, or create offensive meanings. I’m still in favor of putting up with those problems in exchange for what I see as the greater benefit of seeing ‘teasers’ for material I might not otherwise run into, and being linked to posts which are outside my usual range of reading.)
Seriously, in my line of work, one of THE most common things I hear is “but he’s bipolar, that’s why he does it.” It provides the abuser with an EXCUSE for his behavior. It makes the victim feel unable and unjustified in leaving or calling out the abuse for what it is. It’s bullshit. Plain and simple. The BPD didn’t cause him to call her a “b*tch,” or tell her that she’s “stupid,” or “ugly” or accuse her of cheating on him or flirting with every man on the street, or cause him to isolate her, control her access to money, threaten to take the children from her, or beat the shit out of her (but only behind closed doors and hit her in places where most people won’t be able to see).
Psychotic breaks in people with BPD are pretty damn rare. And, even when that does happen, it’s pretty easy, if one is willing to look, to tell the difference between that and abusive behavior, regardless of how dangerous the break may feel or look like or even be. Is there a history? Did the abuse follow a particular pattern (was there a set-up phase? after the abuse was there the fear of reprisal, the rationalization, the false-normal behavior? Is there the fantasy and planning stage where he is actually fantasizing about past abusive incidents and planning out the next one?)? Again, abuse is about creating and maintaining power and control (real or perceived) over another person.
Who has said that it does?
bean seems to be importing experience in a very different arena into this discussion. We really aren’t discussing domestic abuse here.
bean,
But it seems like it could be if it is done for the purpose of exhibiting one’s power over another person. For example, if I can use the threat of filing a complaint to get a home care worker to do tasks that are not actually part of her job (e.g. doing my laundry when I am capable either of doing it myself or of hiring a housekeeper), then filing the complaint when the worker gets sick of this and refuses to do the extra tasks is abusive under your definition. Of course, if the complaint is legitimate (i.e. the worker isn’t doing her real work properly and it’s not due to these extra tasks), then it’s not abusive, but I am sure that anyone who has a complaint filed against him will declare that it’s not legitimate, and it often will boil down to he-said she-said.
Psychotic breaks in people with BPD are pretty damn rare.
I wasn’t talking out of my ass on that. I’m talking about someone who is very close to me, someone I’ve sat with through psychotic breaks more than once. They’re damn rare? Well, that’s nice for everyone else with BPD. Someone still gets to be in the 1 percent.
Seriously, in my line of work, one of THE most common things I hear is “but he’s bipolar, that’s why he does it.” It provides the abuser with an EXCUSE for his behavior. It makes the victim feel unable and unjustified in leaving or calling out the abuse for what it is. It’s bullshit. Plain and simple.
I absolutely, 100 percent agree with this. I am not trying to fight you on this. Really, I’m not. I’m not coming from where you seem to think I’m coming from on this.
All I am saying is that in situations where someone is in a dependent position – because they need life-sustaining care – and they do things that are dangerous or harmful or very upsetting to their care-givers – it’s not always cut-and-dried what is abuse and what isn’t – and it’s not always cut-and-dried how it should be handled.
And again, I’m not saying that this is the case for the woman in the post. I agree with everyone that the OP sort of set up this framing and not enough of us – myself included – really challenged it.
But even there. My bi-polar friend’s behavior often comes off as manipulative.
BPD is not causing your friend to be abusive or manipulative (these are not inhernetly mutually inclusive). S/He has learned to deal with his emotions in a particular way, a way that s/he has learned s/he gets something out of (whether you see it as a positive or not is really beside the point, s/he’s getting something out of it — whether it’s succeeding in getting people to do what s/he wants or an easy way to deal with frustration without the need to be accountable for his/her actions later, or something else entirely). Therapy that focuses on accountability (DBT, for example, or, with a responsible therapist, CBT) would, almost guaranteed, do wonders, if s/he were actually willing to change.
I’d have to take that on a case by case basis. First, is the patient really not responsible? Is s/he really unable to control this behavior? If it’s verbal abuse, it’s highly unlikely that s/he is really unable to control it (it might take serious work and therapy, but that’s not the same as unable to control it). If it’s physical, is it random or done in a specific way with a specific pattern? If it was deemed that the person really, truely and honestly was unable to control their behavior, then I’d have to look at the effects. Can a different caretaker or approach or setting minimize the effects? Is it really life threatening to others? Would having a different care taker or more than one or two caretakers make a difference? Is the behavior inherently harmful/abusive? For example — let’s take the example of that person with the rare form of Tourette’s who would scream the n-word. Now, let’s assume for a moment that this person needed a care taker (that’s a big assumption, because most people with Tourette’s don’t need a care taker, but let’s say that the person also has another health issue that requires one). I don’t think a person of color should be required to provide that care. And I don’t think it’s that white people aren’t or can’t be effected by that word. But, a white person may be able to tolerate it much easier because they don’t have the underlying emotional connection to the harms of that word in the same way that a person of color might. So, a change in care takers would essentially resolve the problem in a way that the patient is still receiving care and the care taker is not feeling harmed. If there is no way to minimize the harms, and the harms are actually dangerous, with the real (not hypothetical) risk of causing permanent damage or death to a care taker, then, yes, I think other steps need to be taken — like putting that person into a facility of some sort where there are more caretakers and solutions for violent outbursts that could cause others harm.
If the person is responsible for their abusive behavior, and they choose not to do anything about that, then that is their choice. One that I will grant them the autonomy and the right to make. I think it should be an informed choice, they should be made aware of what all of their options and choices are, and what the benefits and consequences of each one are. And then they can make their own choice.
There is, and I agree with you that this definition is a responsible one. And it’s true that verbal abuse is different from just, uh, shouting obscenities at someone; it’s also true that professionals distinguish between uncontrolled speech and intentional verbal abuse.
I don’t think it’s right to treat it as the normal definition of verbal abuse given the huge amount of prejudice against people with disabilities. It’s like…I don’t want to be inflammatory, for whatever that’s worth, but it’s like trying to discuss “aggression” in a situation involving a young man of color, or “anger” in a situation involving a woman. We have definitions for concepts like “bullying,” “bitchiness,” etc.–all sorts of words for antisocial or neglectful or cruel behavior, really–and in theory they tend to be based on malice and selfishness.
In practice, though, we tend to apply them in a very slanted way. And most of us, including professionals, have ableist ideas about what is and is not appropriate behavior. We also have ableist ideas about how much power PWD are supposed to have over their bodies and daily lives. Even unconsciously, we react.
I don’t know if that happened to this woman (although, like I said, my feminist alarm bells ring whenever complaining is treated as problem behavior, no matter how many times horrible customers threatened me with it). I think it is likely, and I think it’s important to incorporate that definition of “verbal abuse” or “bad behavior” into this discussion too. Ignoring the abuse aspect–your accurate definition–blurs the line between rudeness and deliberate manipulative cruelty. But ignoring the unbalanced interpretation blurs the line between offense and prejudice.
Abuse is abuse. “Domestic abuse” isn’t some ghettoized problem that we can easily separate from other forms of abuse. Whether it’s a patient being abused by a caretaker, a caretaker being abused by a patient, or a wife being abused by her husband, it’s all abuse. The dynamics are exactly the same. The power and control issues are exactly the same. The effects are exactly the same.
OK, I’m beyond confused here. You can see how threatening to file a complaint could be abusive, but you’re uncomfortable acknowledging that?
So, the fact that “MOST PEOPLE” use abelist language should mean that anyone in this thread should be able to use language in that way, right?
Let me know when I’m allowed to stop flagellating myself.
“I’m uncomfortable with the idea that filing an official complaint can be considered a form of abuse under bean’s definition.’
“Who has said that it does?”
If it doesn’t then most of this thread respinding to you is a gigantic derail, since the post-in-question was about a woman who’s help came from a company who wanted her to sign what amounts to a ‘save our asses’ form. Most of your posts, as I understand it, have to do with health aid workers who’re abused by clients and how that shouldn’t be allowed under any circumstances, and then a bunch of other people (myself included) got confused because we couldn’t figure out what the hell you meant by ‘abuse’ and were outraged that you’d want to shove someone in an institution for being an inconvienence over something that can’t be controlled by a person. Since the post itself shows nothing whatsoever about the client being abusive, it makes people wonder, which might be where Piny’s getting your odd definition of abuse.
And it is an odd definition in these cases. Home health aids and clients who need ’em isn’t the same dynamic as abuse shelter victims, not in the way you’ve been framing it. I’ll hunt down a few disability 101 sites, that’ll probably help.
Sorry, double posted*
“So, the fact that “MOST PEOPLE” use abelist language should mean that anyone in this thread should be able to use language in that way, right?”
Bean, using ablist language isn’t the same thing as having several different definitions of abuse, all valid, and having people get confused.
Bean, you have made some valid points in this thread, but I am really uncomfortable with your black-and-white thinking on how people with assorted emotional and cognitive conditions “should be” and “could be” managing them.
It is not even half a step from your position here to “blame the sufferer,” as in “well you COULD snap out of that depression if you’d just change your depressive thought patterns!” and “you COULD regulate your moods if you’d really work at it!” and “you COULD desensitize yourself to those PTSD triggers if you just put in the effort!” and “your kid COULD be functioning in a school setting if your family would just manage him/her better!” And that kind of talk is frequently used to shame, blame, and marginalize people with mental conditions/illnesses as well as their partners, families, and loved ones.
I gather from reading through the thread that you are coming from a domestic violence background. I’m coming from a mental health background, and can unequivocally tell you that it is NOT so simple as you are making it out to be.
One of the issues that, as a marriage and family therapist, I have to help clients with (and as a teacher of future MFTs, have to help my students understand) is that whether they have a diagnosis or someone close to them does, there will always be areas in which they have control and areas in which they don’t. Figuring out how to live with someone who at times may have unregulated symptoms of their illness (which can include labile affect, sudden rages or despairs, withdrawal and isolation, suicidal behaviors, intensely needy periods, the need to control their environment in great detail, ultra-high standards of cleanliness, and many other behaviors that can come off as manipulative and even abusive) is part of the process for a diagnosed person’s friends and loved ones.
I hear you taking a very cognitive-behavioral view of how people handle their symptoms. Trust me, there are many other ways of understanding the relational functioning of people with (both physical and) mental conditions, and a CBT perspective notoriously leaves out a great deal.
bean,
You seem to be confusing some of the people in this thread together. I am the one who gave the example of how complaints or the threat thereof could be used in a way that meets your definition of abuse, but I didn’t say that I was uncomfortable with that. You might want to note the author of the comment to which you are replying and address that person by name.
For folks who seem to find it inconceivable that a person in need of care could have a position of power over a fully-able person providing that care, maybe a literary reference is in order: remember Mrs. Dubose from To Kill a Mockingbird? In some cases, the person who needs care is socially subordinated *only* along that dimension; she might otherwise have multiple forms of privilege, including of age, race, socioeconomic status, etc., that allow her to exercise *non-physical* forms of power over the carer.
North East CCAC? The company saying that complaints qualify as abusive behavior? The company that apparently tried to get this woman to waive her right to complain in order to get assistance? Half of the conflict that started this whole discussion we’re all participating in?
Here’s the quote:
You clearly have a lot of other experience to draw on here, and I appreciate it very much. You also seem to be having a rough time in this comments thread. But would you please not act like I’m not making sense because I’m commenting on the post rather than the manipulative tendencies of some schizoaffective third cousin? You know, the one who doesn’t even have hypothetical in-home nursing care?
And no, the power and control issues are not exactly the same. A spouse is not a prison guard is not a parole officer is not a CNA is not a nurse is not a doctor. Any power-over definition of abuse that doesn’t incorporate power disparities–like the option of retaliating against people who complain, for example–is a useless one. The actual ability to fuck other people over is at least as important as the desire or the attempt. This is a situation where one side staged a hunger strike after the other side decided not to bathe her. That indicates a differential that I find very significant.
That’s why this complaint thing is important, why it’s problematic to rule complaining abusive. Complaint procedures are typically a defense against institutional neglect and abuse, and they usually exist because neglect and abuse are very common. They give clients transparency, standardization, paper memory: all valuable protections. It’s true that some people petition falsely, but it’s an oversight policy. Accountability. Not a privilege, and not direct power.
I hear what you’re saying, but I would also ask you to consider the lines of attack that Bean is going to hear in her work. I think everyone is trying to find an acceptable middle ground between “People with mental illnesses are just too weak-willed to fix them” and “My abusive husband has a mental illness and he just can’t help it, so I should let him hit me.”
The distinctions piny is making at #114 and #124 are pretty important, I think.
Absolutely, although her situation was unusual, and Jem was like ten anyway. I think she was really quite nice for someone going cold-turkey on laudanum.
It’s also worth noting that both sides–assistant, assisted–can have people “behind” them, although those others might have other interests. These workers had the protection of their employer, who had an incentive to protect their reputations and eventually to alienate Mettinen-Kekalainen. A woman like Mettinen-Kekalainen (or Mrs. Dubose) might also have a family or agency to intercede. This has become a fight between Canadian contractors and public health agencies; it could as easily be a fight between a hospital and a union, or an HMO and a facility.
I believe that verbal abuse is a potential problem, and I know that employers can bully. I also know that nursing/caretaking is in general an underpaid profession, which means that workers are specially vulnerable to toxic employment.
This situation sounds a bit different, though. Plus, she’s paralyzed from the waist down and bedridden, and the article said she hadn’t been bathed in three months. I don’t think any balance between the two interests could call that right.
http://www.ragged-edge-mag.com/garrett/causes.htm
The long & sorry history of discrimination against people with disabilities in the United States
— and its likely causes
http://www.dredf.org/international/paper_yee.html
That one’s an html of a paper, bit wordy, “Where prejudice, disability and disablism meet” by Silvia Yee.
http://ballastexistenz.autistics.org
Grand Blog, that, and someone else mentioned Elozaveth’s blog ‘Screw Bronze’, also excellent.
Well, I had disability 101 links and the problems/prejudices it entails, but it seems to have been eaten. I’ll try again later.
[Pulled it out of spam. — Mandolin.]
Mandolin – I know the area of most productive discussion (and the area that most corresponds to real life) is of course the grey midddle. But that’s not what I’m seeing from bean’s rhetoric, and it’s troubling.
I have no idea on which side of the “abusive or not?” debate Minna M.K.’s behavior fell. Odds are it’s likely somewhere in the muddy middle too. Odds are that some combination of factors about Ms. M.K. and factors about her caregivers and factors about the system in which both are imbedded created this situation.
My grandmother behaved in a way that could have been labeled “abusive” toward home health care aides, first for my grandfather after his stroke, then many years later, toward people my uncle tried to hire to spend time with her while he was at work. She was fond of the “you’re not doing X correctly” tactic (because she was extremely picky even when she was well, and when she was unwell her lack of control over her body resulted in increased attempts to control and micromanage those around her) combined with the “I’ll report you” tactic (because she was always unwilling/unable to accept the limitations of their role – they were not there to clean the house, but to care for Grandpa/her) or the “you’re fired” tactic. And yet I have plenty of reasons to believe that she interacted with a great many care providers who were under-trained, disinterested, limited by their own personality flaws, and who saw her husband and her as simply “cases” to be disposed of with as little effort as possible.
The suggestion that those who receive in-home care are either angels OR devils, that they are always in the right OR that if there are issues, they’ve created them, is able-ist. Disability in no way should invite dismissal, nor dismiss co-culpability.
I just can’t tolerate injection of the idea that continuing to have symptoms that are sometimes difficult, upsetting, or even hurtful to those around you represents a failure of personal responsibility. An “either/or” mentality – either a person is wholly responsible for their behavior, no matter their diagnosis, OR they are not responsible at all, is utterly unhelpful. “Both/and.” It’s gotta be both/and.
Elusis, believe me, I know all about the mental health care field and all the various studies and theories and the various forms of treatments, and how some work for some but not for others and all of that. And, I’m not saying that it’s easy, quick, or something that one can just decide to do and do it and have it done with for good and forever. But, there’s a VAST difference between someone who is actively acknowledging their own behaviors and taking responsibility for it, and attempting, no matter how slowly it may be, to make changes but occassionally has lapses, and someone who will simply say, “well, my BPD made me do it, it’s not my fault, nothing I can do, deal with it. And if you don’t, you’re just horribly bigotted against those with mental health issues.”
But, there’s a VAST difference between someone who is actively acknowledging their own behaviors and taking responsibility for it, and attempting, no matter how slowly it may be, to make changes but occassionally has lapses, and someone who will simply say, “well, my BPD made me do it, it’s not my fault, nothing I can do, deal with it. And if you don’t, you’re just horribly bigotted against those with mental health issues.”
“Occasional lapses” are occasional lapses into abusive behavior, and not everyone can actually recover. We’re talking about problems that last for years and recur on their own schedules for lifetimes, not a few unpleasant weeks on hazard pay. That means that abusive behavior is a condition of assisting some PWDs.
I don’t know if it’s a vast difference so much as a vast spectrum, with the vast majority of assistees falling somewhere in between. There are also any number of individual and institutional factors in their ability to control their circumstances. Some of those are directly related to their ability to access quality assistance and medical care and establish good relationships with care providers. Why we’re still bothering with that end, I’m not sure. This woman doesn’t have BPD, BPD doesn’t usually result in bedsores or death, and I don’t see allegations that she called anybody a useless bitch and then blamed it on a disease she did have.
Yes it is. But why do you feel the need to point that out in a thread in which not one single person has made this assertion?
I think it would be clearly dangerous to assert that threatening to make a complaint against a worker was inherently abusive. I think it would be just as dangerous to resist the idea that that CAN be a form of abuse just because it makes one feel “uncomfortable.”
And OMFG, how many times can I say that I don’t have a flippin’ clue whether Minna MK was abusive or not. I have never claimed that she was or that she wasn’t. I have never claimed that she was in the wrong or in the right. I have most certainly never made the claim that she had a mental illness, let alone a particular mental illness. I have never made any claims about Minna MK. I have said over and over and over and over that my concern is the idea that health care workers should expect to be abused and should put up or shut up about it.
Oh, there’s still a difference — is the person acknowledging the “lapse” and taking responsibility for their own CHOICES and actions, or are they still blaming their “illness?” So long as they think (and esp. so long as others allow them to think) that they have an “out,” they’ll take it. And so long as they take that “out,” they’ll be unable to recover. But it’s not because of their “illness,” or because it’s beyond their control.
Also, while I recognize that leaving an abuser is always, always hard, and while I will respect the autonomy of people to make their own choices, the fact remains that one of the clearest determinants to whether an abuser will fail or succeed in overcoming their abusive patterns and behaviors is whether they are remaining in the same relationships and lifestyles in which they were abusive. Fact is, the abusers who are most likely to overcome their HABITS of abusive behavior are going to do so by forming new situations and relationships in which the old patterns and triggers aren’t there.
bean,
I “felt the need,” or rather, I did make that point because your comments are giving off a strong whiff of that particular perfume. As have others’, mostly of the opposite sort.
Well, then, may I suggest that you actually try to read what I write, not what you think I’m saying, based on your own biases or blinders.
The exact forms of power disparities can change from situation to situation (that would be true even if one were ONLY looking at “domestic” violence). But abuse is the same — it’s about creating and/or maintaining power and control over another. Whether it’s a husband/wife, a prison guard/prisoner, or a health care provider/patient. In most cases a husband is going to have control over his wife — but that doesn’t mean that a wife can’t abuse, or that if she does that it’s not the same. In some cases a patient’s only defense is the ability to report an abusive caretaker. In other’s a patient will use the threat of a false report (or an actual false report) to harm the caretaker who the patient knows will not be defended by their company, or who will be harmed by any report, even if it’s eventually deemed to be unfounded. Both of these situations involve power and control and abuse. Just because the actors are playing different roles, and the exact tactics at hand are different, doesn’t make it less about power and control or less about abuse.
Welll…. Bye, y’all. Read what A.W. linked. I’m done reading. The continued assumptions about this woman are extremely offensive.
“Oh, there’s still a difference — is the person acknowledging the “lapse” and taking responsibility for their own CHOICES and actions, or are they still blaming their “illness?” So long as they think (and esp. so long as others allow them to think) that they have an “out,” they’ll take it. And so long as they take that “out,” they’ll be unable to recover. But it’s not because of their “illness,” or because it’s beyond their control.”
Okay, so, um. No such thing as an actual lapse in mental health, apparently, as the behavior’s all choice, and the only time illness is used is as an excuse to get away with shit is what I’m getting from your post, especially with the quotation marks around lapse and illness and the shouty CHOICE. And gee, thanks for the quotes around ‘illness’, by the way, as if mental illness didn’t have enough “Pull yourself up, dammit! Naysayers. You’re aware you can claim your past actions as your own and responsibility for it even when you had little or no say in the matter, right? Not denying an illness isn’t the same as claiming it as an excuse, and pretending illness doesn’t impact choice in behavior / having lapses doesn’t mean people just aren’t working – hard – enough on their ‘CHOICES’.
The more I think about the power-over definition of abuse, the more dubious I am about it in this discussion–not just because it might not encompass ableism, but because it doesn’t seem to encompass mental illness.
(Which, again, doesn’t seem to have anything to do with Ms. MK.)
I think I’m happy to set aside BPD. It’s kind of like responding to, “Look, nobody’s putting a gun to their heads,” with, “What about people with Gun-to-the-Head Syndrome?”
As you define it, abuse involves some cunning. Abusers use fairly complex tactics to achieve a specific goal. A lot of this isn’t planned, exactly, or even conscious, but they have a motive and a strategy.
Many kinds of mental illness involve a degree of irrationality. They can make people impulsive, immature, delusional: they can damage perspective, especially as regards other people. People dealing with these problems usually aren’t operating from an abusive stance, or reading the relationship the way a caretaker does. But they can be nasty and selfish and sometimes frightening. Take someone who makes verbal threats because he’s paranoid and believes that he’s at the mercy of people who want to kill him.
This kind of illness can be difficult to treat, and these symptoms can be a significant barrier to treatment. Some diseases are simply untreatable: Alzheimer’s, for example.
A lot of these behaviors are recognizable as symptoms, although many are ambiguous and unpredictable. But it’s not simple, and it’s not possible to say that these people just aren’t sane and don’t count, or to act as though they no longer have personalities or minds. Their behavior doesn’t necessarily feel different to people on the receiving end. I’m not sure it’s less painful.
There’s also the issue of interpersonal continuity. Caretakers don’t always have a long-term relationship with their clients. They don’t always have any relationship at all, or any individual discretion. They can’t always track personality changes over time, or attribute them correctly. Even knowing what’s wrong won’t always resolve stress, but this system doesn’t guarantee even that.
Good suggestion, although, I’d hope that everyone who reads the post would actually click on the link, for a passer-byer just reading through the titles of the posts wouldn’t catch that, of course.
Heavens, however could this discussion have gotten so unproductive? I explained why it makes me hugely uncomfortable. Don’t act like this is the wisdom of vague misgiving, here.
“Sorry I stopped taking my meds, guys. I probably should have tried harder to get in touch with my caseworker. I mean, she hadn’t talked to me in months, and she probably didn’t know that I didn’t make it to my last two checkups because she screwed up the paperwork. I should have tried harder to receive care. But seriously, my bad on the fugue state. And I’m really sorry I scared that bus driver. I was kinda anxious. Hopefully the new dosage will even me out eventually, huh? I’ll have to try a lot harder to not have delusional thoughts. But I know you have my best interests at heart, and I’m prepared to always deal calmly and fairly with everyone assigned to my care, even on those days when I feel a little decompensatey or just a bit down.”
This is just not a workable dichotomy, and not only in the context of delusion. There’s not always a clear bright line between choice and compulsion. It might work for disordered–and abusive–behavior. It doesn’t work for mental illness, which can cause behavioral and personality changes, and which is not solely under someone’s control or even predictably uncontrollable. Mental-health professionals can’t assume this level of responsibility infallibly. This kind of reasoning just doesn’t accomodate this problem.
I’m also tired as well, thread was rather close to home, seeing as I’ve visual difficulties, worked as an aid and have mental health shit to deal with. And I – really – didn’t like what I saw as the ‘poor beleagured home health aids’ schtick (I find it usually (not always, obviously) comes from people who don’t give a damn about the health aids – or – the clients), twas especially redundant in this thread where it doesn’t belong. The article was s’posed to be about a woman getting screwed over on care, I thought the comments would center that, but no. That’s not what happened. Instead what was centered was abuse against health aids that wasn’t, so far as I could tell, mentioned in the article. There’s other, more appropriate places to talk about problems aids face (the most pressing, imo, are wages, working conditions (lack of proper equipment) and training, not solely (as in this thread) potential harm to the aid (potential harm, which you might be interested to know, falls under training). That’s dealt with and managed as it comes along. (please note, this is not the ‘sitting down and taking it’ Bean seems to think is prevelant. Also, I’ve yet to hear “My mental illness made me do it, kthnxbai, from – anyone – with those problems, though I’ve heard of it happening). Unlike a lot of other jobs, possible friction is – par for the course (at least my course, I mostly worked with ‘severely’ disabled children) – because we work with people intimately. It’s…look, I’m tired, arguing on three fronts is a bit ridiculous, might be back tomorrow but what with the mental health bias rearing its ugly head it might be too much.
Well, then, by all means — if it makes you feel uncomfortable, let’s just pretend that it could never happen. All better now.
My goodness but there’s a lot of excuse making and manipulation in there, and very little actual accountability in this example. Seriously, if that’s your understanding of accountability, then no wonder you wouldn’t think people would actually ever be able to do it. In fact, it sounds very similar to a lot of excuses I hear from abusers (or on behalf of abusers trying to explain why he “didn’t really mean it”).
Out of curiosity, for the people (majority of commenters) on this thread who are in a defensive mode on behalf of the woman in the OP, what would be your solution if none of the aides at a company wants to care for her, and indeed no company in her geographic area can find someone willing to do the job? Demand that the companies require the aides to work for whomever they’re assigned — regardless of the patient’s behavior — or be fired?
What a pity Kristin left the discussion before she could thank Jack (or whoever) for adding the requested scare quotes. Oh, wait…
Actually the link was to a blog post about an article, a blog post that said workers should deal with and expect to be ABUSED (a blog post titled “Rights of nasty people” — no scare quotes, btw). So, why shouldn’t someone comment on that? Why should that be ignored? Oh, right, they should suck it up or quit. They choose to be abused. And patients are never responsible for their own actions or behaviors.
Again, it’s not about my discomfort. It’s about the prevalence of abuse of disabled people–and the fact that in many cases, including this one, the abuse can be torturous and downright lethal. Bedridden. No baths. Three months. You know what decubitis ulcers are called when they’re at home, right? That’s just not the same as the ability to threaten someone’s job–even if you assume that an organization would side with the disabled person. We aren’t talking about the power to fire someone. We’re talking about the right to report abuse.
My goodness but there’s a lot of excuse making and manipulation in there, and very little actual accountability in this example. Seriously, if that’s your understanding of accountability, then no wonder you wouldn’t think people would actually ever be able to do it. In fact, it sounds very similar to a lot of excuses I hear from abusers (or on behalf of abusers trying to explain why he “didn’t really mean it”).
I think Arrogant Worm is right. It’s a bit of a distraction to talk about abusers who “don’t really mean” to say murder their spouses, given that people with disabilities are typically far more vulnerable to any given care provider. But now you’re equating mental illness and an inability to properly care for oneself in the event of mental illness with the tendency to injure your spouse and absolve yourself of responsibility to her. As though there were no difference between paranoia and mental cruelty, or irresponsibility and delusion.
I don’t think your understanding of accountability has anything to do with the reality of health or healthcare, and I think it’s a really dangerous standard to inflict on patients. Combine this sort of callous attitude towards people with mental illness with a callous attitude towards human dignity in extremis, and you’ve got the punitive, deadly system we live with now.
Let’s also not forget how much of the state’s attitude in this case might be driven by the idea of, “Fuck it, she’s dying anyway (of ALS), not worth the trouble.”
I watched the video that Minna posted on YouTube. It didn’t strike me that she was just pulling complaints out of her ass; she had them documented, with copies of the nursing notes and her own. It’s eminently possible that the people who were sent over to care for her had never had to deal with anyone with the combination of Asperger’s (which at the very least, can cause sensory-sensitivity issues that have to be kept in mind) and ALS (a neurodegenerative condition which in itself is a rarity), and thus really did not know what they were doing.
Speaking as an aspie, I don’t think any kind of abusive or combative behavior (assuming that even existed here, which isn’t clear at all from the information given) needs to be linked to being on the autism spectrum. Plenty of non-autistic patients can be both of those things; just ask anyone who cares for people who have had strokes, Alzheimer’s, alcoholism, drug addictions, or other neurologic or psychiatric issues that can greatly alter brain chemistry. (And given that the population of North America isn’t getting any younger, they’d better be prepared to deal with this sort of behavior in health care settings, given that aging populations have more strokes and Alzheimer’s. Even if most patients with those conditions are not combative, there will be an increase in the number of people who are.)
It’s true that a lot of the time, though, especially if we’re in a lot of physical pain, we might forget to be perfectly tactful and sugary sweet, even if those social skills exist when we are NOT in a great deal of pain. And of course, anyone on the spectrum can have other neurologic/psychiatric issues in addition to their autism. Incidentally, not everything listed in the DSM is a “mental illness,” either; my doctor just yesterday coded me specifically as having “circadian rhythm disorder related to shift work.” Yep, that’s its own DSM code. Not a mental illness.
I agree with what’s been said about the OT-ness of the direction of the comments.
I also have to say that discussion of “personal responsibility” in the context of this particular context misses the point and doesn’t really acknowledge the full range of disability. This isn’t about assholes who beat their wives and are trying to excuse themselves, or at least it’s not only about them. It’s about many of us who have neurological makeups which simply make it much more difficult to cope with certain things. Many people with mental/neurological disabilities, myself included, try hard every single day to deal. We’ve often spent much of our lives in an inadequate mental health system. And yeah, sometimes we screw up and say or do things which would probably be classified as “abusive” under some definitions of the word.
But please don’t tell me that our situations are the same as a basically NT person consciously choosing to be a jerk. Please admit that you can’t know what’s going on inside our minds, and please cut out the judgmental bullshit. We already put up with enough misunderstanding and bigotry for things which are largely out of our control. There is no one-size-fits all model. People’s brains are DIFFERENT.
That’s true, but try to tell that to unreasonable people. It is the Diagnostics and Statistics Manual of mental illnesses. This is a big part of the reason why gender variance is still as stigmatized (GID in childhood, GID in adulthood, transvestic fetishism). Homosexuality was removed in 1973 and its condition progressed a lot (civil rights wise) in part due to its removal.
I also don’t agree with the tendency to change “syndrome” into “disorder” as was done with Asperger Syndrome, in the DSM. Disorder carries a more pejorative meaning imo.
The DSM’s meaning and over-inclusion needs to be revised urgently imo…all non-“normal” sexual behavior are “paraphilias” and are in there somewhere, including asexuality.
“However, the cause and treatment of paraphilias are poorly understood, and treatment is rarely effective. In addition, many professionals prefer not to pathologize sexual behavior that involves only willing adults, even if the behavior might be deemed deviant in mainstream society. In cases where the behavior is potentially criminal, as in pedophilia, treatment is usually offered within the penal system.”
(emphasis mine)
Sadism, masochism, any type of fetishism for any object or kind of person or body part, dominance/submission, infantilism…even with consensual people only, being involved (and infantilism doesn’t involve minors).
“It’s about many of us who have neurological makeups which simply make it much more difficult to cope with certain things”
I hear your frustration with all of this; I really do. I know this conversation is extremely heated and tiring for everyone, particularly those who are invested in personal ways, which IMO probably includes Bean’s experience helping abused people, as well as people who are speaking as individuals sometimes classified as disabled.
I just want to say that it’s probably unwise to assume that people in this conversation — no matter what they’re arguing — are neurotypical or do not have any form of abnormal psychology, mental illness, or DSM diagnosis. It is my strong suspicion (knowledge in some cases) that many people arguing here on both sides have had to deal with those problems, and with those kinds of oppression.
I’ve had major depression but don’t anymore. I almost qualified for anorexia nervosa for a long time (don’t think I do now). I don’t quite qualify for Dissociative Identity Disorder (too stringent requirements) although I have 2 personalities. I have AS per criterias in the DSM. I’ve been diagnosed with GID. I would qualify as Paraphilic Infantilist.
So yeah, though I’ve avoided shrinks as much as I could, and few of them had even remotely realistic ideas about AS (one said I couldn’t possibly have it because I didn’t have very obvious whole body behavior such as hand-flapping). I will never mention Infantilism to a shrink that treats me. I’ve avoided much of the stigma cause I don’t hang around them and don’t need treatment.
I think Sailorman (and bean) are probably right that there will be limits to who can be cared for at home. I think the right to receive life-sustaining care is absolute. I don’t think the right to receive it on your own terms is absolute.
I think withdrawing home care and offering only institutional care should truly be a last resort, both because of the infringement on the personal autonomy of the client/care recipient and because it just doesn’t make any sense, when it comes to allocating health care resources, to have someone who could be cared for at home cared for in an institutional setting.
Without knowing more about the particulars of this situation, I don’t know what they tried and what they didn’t. As I said in an earlier comment, there usually are caregivers who have a better aptitude for dealing with certain kinds of patients. As A.W. said, training for care givers has a lot to do both with the quality of care provided and the quality of working conditions for those workers. Training helps workers understand how to handle situations of potential harm. I don’t know about the Canadian system, but in the U.S., people who qualify for Medicaid can designate a friend or relative as their caretaker and that person can get paid for providing care. Could that have been an option? Was there a friend or relative who would have been acceptable to the client who could have been trained and paid to attend to her needs? If the only problem with the working conditions was that she was threatening to complain about the quality of care, did they get her and her care giver and her doctor and her case manager in the same room and ensure the care being provided was adequate and everyone had the same understanding of what was necessary?
I’m not someone who thinks a care recipient can never abuse (in the power/control sense) a care giver. You are right that someone who is in need of care could be privileged over their care provider in every other way.
But I think your scenario – where no agency and no care workers in the entire region would attend this woman under any circumstances – is pretty unlikely if everyone involved is actually working in good faith to find a resolution. (I find it interesting – and I’m misunderstanding your story, please correct me – that your great-grandmother stopped hitting her care worker when she was confronted about it. That’s a pretty clear cut case, but look, there was a solution.)
As for ordering a care worker to attend to someone or be fired, I don’t think I can say this would always be the wrong thing for an agency to do, provided the agency was taking every feasible step to make the work environment safe for the worker. I understand that home care isn’t the same, from the worker’s perspective, as care work in an institutional setting, but workers in any field don’t have some absolute right to refuse to do their job and remain employed. How would we view it if a doctor refused to attend a patient because they didn’t like the person or found something unacceptable about the patient? I would consider this also a sort of last resort. Honestly, I find it hard to believe that absolutely no one would attend to this woman based on actual experience with her, as opposed to a reputation spread by others, so that’s influencing my response here.
So, why shouldn’t someone comment on that?
On the other blog, you mean? Go right ahead. Or did you mean to say that we shouldn’t use the term “abuse” in the technical sports sense here, something that nobody had yet done when you started unless you count one person quoting and expressing confusion about the linked post?
Just to clarify for anyone who didn’t catch my comment some hundred posts back, I was making a general point, and wasn’t making a conclusion or comment about this woman in particular.
Sarah, what does “NT person” mean?
Sailorman – NT stands for neurotypical.
chingona,
I agree that in almost every situation, people working in good faith can find a resolution, although often that resolution will require another person’s exercising power. In my great-grandmother’s case, one of her grandchildren threatened to withhold financial support unless she treated her care provider better. You posit that the home health company may have to require that the care provider work with a client or else be fired, and presumably this would be true even if the client is threatening the provider’s ability to work in the future by filing publicly-available complaints without sound basis in fact. That’s the company exercising power over the provider. Again, I agree that this scenario — patient filing false complaints as power play over care provider — is itself very unlikely, but I agree with bean’s original concern in this thread that the OP seemed awfully blithe about the care provider’s well-being.
Yes, power might have to be exercised to resolve the situation. What kind of power and against whom is going to be very case-dependent. In any individual situation, I might well side with the care giver, but I don’t think some hypothetical care giver has an absolute right to refuse to do their job with no consequences no matter what.
Another piece of information that we don’t have: What kind of investigation is done of complaints, and what happens to complaints that are unsubstantiated. In some places and for some types of licenses, unsubstantiated complaints aren’t even public, only ones that have been found valid. In other situations, they are but anyone who sees it will also see that it is unsubstantiated.
Frankly, I have a hard time believing that a single unsubtantiated complaint is actually going to bar someone from employment ever again. Ten unsubstantiated complaints from the same person might have even less of an effect. Rather than withhold care, perhaps the company could offer to provide a letter to the nurse for her to present to future employers. Lots of people in all kinds of professions and at all income levels have left employment under negative circumstances – some of them blatantly unfair to the employee – and still managed to find other work. I’m not trying to be flip about this. I just think that the occasional invalid complaint about you is an occupational hazard of many types of work, and that should be kept in mind when considering what kind of threat that represents against the worker and what the appropriate response is.
Lots of stuff to think about here… like a lot of other people here I’ll talk about my own experience a bit, even though it’s not directly parallel.
My son is severely disabled, both mentally and physically, and needs daily care: he can’t wash, dress, or toilet himself, nor can he walk or prepare food. He’s not all that keen on having some of these things done for him either, so he yells “no” a lot. He’s not at all manipulative, however — cognitively he’s about two — so by the generally agreed definition he’s not abusive, nor can he be. (There are a few advantages to not being a moral actor.) I don’t much like having him scream “no” in my ear, or flail at me while I’m trying to change his diaper, or knock over his milk and then laugh as it drips onto the floor, but it’s much easier to live with because I know he isn’t doing any of this with any malice or manipulative intent. (Like any parent I can use a break now and then.)
He’ll need care all his life, and eventually his primary caregivers will be hired, either by us or (more likely) by the state. They will have all the power, because he can’t frame a complaint. To balance things out he will need an advocate, and we’ll need to figure out who that will be when we’re no longer around. One candidate is his highly competent and very loving sister, but she’s only twelve, so we’ll figure it out as we go.
There’s a huge spectrum with my son at one end and a hypothetical disabled sociopath at the other. In the middle I would imagine that the power dynamics of a given relationship might be extremely complex. I think in a given case it could be very hard to tease apart how someone’s neurochemistry could affect their behavior, or could potentiate asshole-ish behavior, vs. whether that person is simply an asshole in addition to having a crossed wire somewhere.
I don’t think anyone should be denied essential care, and I think into each life some crap must fall.