When psychiatric services suck donkey balls (compared to other disability services).

This is my first post for BADD this year — Blogging Against Disablism Day.  Hopefully there will be others to follow.

So these days, in the USA and many other countries, different categories of disabled adults get different services that are supposed to help us live outside of institutions.  One kind of services is developmental disability services.   Another is physical disability services.  Another is psychiatric disability services.  Since the differences often have more to do with accidents of history, who gets to classify what groups of people, and so on, I’m not going to try to explain the differences here.  I’m also going to use a lot of medical language, because if I try to describe things as they are, I’ll get bogged down in language and never finish the post.  So please don’t take this post as agreement with the conceptions of disability laid down by service systems and professionals.  I’m just using their ideas for convenience.  As well, I’m speaking in generalizations.  Of course there are exceptions on all sides of this.  It’s just striking how consistently psychiatric services work a certain way, when other services either don’t work that way at all, or vary in how they work.  Psychiatric services stand out as particularly bad in this regard.

If you get DD or physical disability services, there’s a pretty good chance that a large part of your services will involve either helping you do things you can’t do (or can’t do without creating serious problems for yourself), helping you learn how to do things you can’t yet do but are within your grasp for learning, or some combination of the two.

A lot of times these tasks are broken down into ADLs (Activities of Daily Living) and IADLs (Instrumental Activities of Daily Living).  Here’s an example of how such things are often broken down:

ADLs:  Bathing, Dressing, Grooming, Mouth care, Toileting, Transferring Bed/Chair, Walking, Climbing stairs, Eating.

IADLs:  Shopping, Cooking, Managing medications, Using the phone and looking up numbers, Doing housework, Doing housework, Doing laundry, Driving or using public transportation, Using finances.

These definitions were taken from the Senior Planning Services website, in a PDF file titled ADL / IADL Checklist.  That’s just one definition.  Other lists might be longer, or shorter, or more descriptive than this one.  But it gets the idea across.

The Oregon Department of Human Services published a document that describes common ways how a person with a developmental disability might be supported in accomplishing ADLs and IADLs:

Assistance with ADLs, IADLs, and health-related tasks may include cueing, monitoring, reassurance, redirection, set-up, hands- on, or standby assistance. Assistance may be provided through human assistance or the use of electronic devices or other assistive devices. Assistance may also require verbal reminding to complete IADL tasks.

(A) “Cueing” means giving verbal, audio, or visual clues during an activity to help an individual complete the activity without hands-on assistance.

(B) “Hands-on” means a provider physically performs all or parts of an activity because an individual is unable to do so.

(C) “Monitoring” means a provider observes an individual to determine if assistance is needed.

(D) “Reassurance” means to offer an individual encouragement and support.

(E) “Redirection” means to divert an individual to another more appropriate activity.

(F) “Set-up” means the preparation, cleaning, and maintenance of personal effects, supplies, assistive devices, or equipment so that an individual may perform an activity.

(G) “Stand-by” means a provider is at the side of an individual ready to step in and take over the task if the individual is unable to complete the task independently.

That gives a pretty good overview of how disability services are supposed to work:  There are things we can’t do, or can’t do without assistance, or can’t do without being so drained afterwards that more important activities fall by the wayside.  Again, there are many other ways that we can be helped, but this gives you a good overview.

Generally, the above is what you’ll see when you’re getting services based in the DD (developmental disability) system, or the physical disability (sometimes just “general disability”, since physical is assumed the default by a lot of people) system:  You have trouble doing ADLs, IADLs, or other activities that you need or want to do.  So someone either helps you learn to do them, or helps you do them.  The kind and amount of assistance may be the same every day, or may vary day to day.  But the fact that you’re getting this assistance, does not usually change once you’ve been deemed to need it on a long-term basis.

Not so with psychiatric disability.  And here we come to the main point of my post.

Like developmental and physical disabilities, psychiatric disabilities can come with problems that make it difficult to do ordinary daily living activities.

The one that’s most obvious to me, especially through knowing people with serious problems in this area, is something referred to as avolition.  Even if you’ve never heard the technical term avolition before, you’re likely to find this description familiar from other areas of life.  Here is part of Wikipedia’s description of avolition (bolding mine, for emphasis):

Avolition, as a symptom of various forms of psychopathology, is the decrease in the motivation to initiate and perform self-directed purposeful activities. Such activities that appear to be neglected usually include routine activities, including hobbies, going to work and/or school, andmost notably, engaging in social activities. A person experiencing avolition may stay at home for long periods of time, rather than seeking out work or peer relations.

People with avolition often want to complete certain tasks but lack the ability to initiate behaviours necessary to complete them. Avolition is most commonly seen as a symptom of some other disorder, but might be considered a primary clinical disturbance of itself (or as a coexisting second disorder) related to disorders of diminished motivation. In 2006, avolition was identified as a negative symptom of schizophrenia by the National Institute of Mental Health (NIMH), and have been observed in patients with bipolar disorder as well as resulting from trauma.

[…]

Regarding schizophrenia, the American Psychiatric Association reported in 2013 that there currently are “no treatments with proven efficacy forprimary negative symptoms” (such as avolition).

When autistic people experience something that looks nearly identical to avolition, it’s likely that it will be referred to as executive dysfunction, inertia, or catatonia.  While people often mistake catatonia for a psychiatric term, it was originally a neurological term.  This is reflected in the fact that some forms of movement disorder are described as involving catatonia, where other similar movement disorders are referred to as parkinson-like in nature.  In other words, you can have the exact same traits for the exact same reasons, and what medical label gets used will depend entirely on whose territory you’re under: neurology, psychiatry, or developmental disability.  The problems may be more identical than you’d imagine.

But that’s not really the point.

The point is what happens when you have problems initiating and completing tasks as a part of the DD or physical disability systems, versus when you have the same or similar problems initiating or completing tasks as a part of the psychiatric system.  Because if you’re getting psychiatric services in your own house, I can tell you they’re highly unlikely to look anything near the above quote from the Oregon Department of Human Services.

People getting psych services in their own home don’t tend to have anywhere near as much support as other disabled people do, in getting things done that you can’t do for yourself. You’ll likely be referred for therapy and medications, even though there is no therapy or medication that gets rid of avolition very often at all.

Doing that?  Is the equivalent of, if I applied for a Hoyer lift for my myasthenic syndrome, and then instead got a referral to a neurologist and a prescription for some pyridostigmine.  Mind you, this is even assuming that therapy and meds are going to work for avolition anywhere near the level that a neurologist’s referral and a pyridostigmine prescription will help someone with myasthenia.  But even presuming they are, they’re simply not going to be sufficient to solve all the problems of avolition.

And even if therapy and meds somehow worked in the long term?  While the person was waiting to see if the worked, they’d still need services to help them get through the day in the meantime.  Avolition can result in a total standstill of daily living skills — not just a failure to socialize, but a failure to eat enough, drink enough, keep a job, any number of things.

And avolition is not the only thing that can affect people in the psychiatric system and their ability to take care of themselves.  There’s a kind of inertia that goes with depression — its different from, say, autistic inertia, but has some of the same effects in terms of rendering it difficult to move and do things.  (One of the big differences is that the depressive kind of inertia often goes along with feelings like “I’m not worth getting out of bed for” that autistic inertia generally doesn’t have.)

Worse than just leaving its clients in a state of constant neglect, the psychiatric service system often uses the excuse that doing this is for people’s own good.  After all, the saying goes, if you just let a crazy person get away with being crazy, they’ll never learn to be responsible adult citizens.  Even if over and over there’s proof that leaving people to their own devices only leads to neglect and resulting suffering.  But there’s a longstanding belief that psychiatric patients are basically like children who need the firm guiding hand and tough love that only a parent can provide.  Yes, this belief is wrong.  Yes, it’s disgusting.  Yes, it’s responsible for suffering, poverty, homelessness, and death when taken to an extreme.  And it often is.  Taken to an extreme, that is.

The way I see it, it shouldn’t matter whether your inability to get the housework done is because you’re paralyzed, because you’ve got a chronic illness, because of a cognitive disability, because of terrifying hallucinations, because you’re depressed and feel worthless and drained of all energy, because you’ve got a movement disorder, or any combination of these and other things.  If you need the help, you need the help.  People shouldn’t be cut off from such help just because, through accidents of both personal and societal history, they happen to get psychiatric services rather than some other kind of disability services.  Human beings are interdependent.  That’s how every human culture has always worked.  It’s time we started acting like it.

“I’m the only one who can take care of you properly.”

“Do you want a full bed bath?” she said. “I'm going to be gone for a full week, and I know you won't want anyone else doing it for you.”

Uh-oh. I made a mental note to ask her other clients if this meant whatbi thought it meant.

I usually don't get an entire bed bath at a time because it wears me out. But that wasn't the issue. I have very sensitive radar for certain warning signals from caregivers. It's a survival thing. And I freak out a little at any hint of “You need me, I'm the only one who can take care of you properly.”

The weird thing about it is she's not even that good at her job. I mean she gets the basics done. But she does a lot of things that seem little and aren't, if that makes any sense.

Like she scrubs too hard, which causes pain and, for people with fragile skin, injury. She isn't able to control where she puts her hands. By which I mean she seriously thinks she's staying within certain bounds and she's not. Which means she gets lotion on my hands instead of just my wrists, which makes my eyes burn when I rub them later on. When she washes my vulva she goes all the way back to my anus despite attempts to stop her, which can cause infections. She can't aim properly when putting anti-fungal cream on, so my skin still burns when she's done. And no matter how many times I tell her to do otherwise, she tries to pull a towel out from under me before I have my pants on. Which can result in Desitin getting all over the bed sheets. She’s also one of the ones who inadvertently claws my vulva and thinks she doesn’t have fingernails.

More worryingly, she can be borderline abusive. You know how people slam cupboard doors and bang plates onto the table when they're angry? She does that to people. It's painful and alarming. She scrubs you even harder, slams your body around, and is generally rough with you.

Even when she's not angry she can be worrying in this department. On days when I'm unable to respond to her or move well, she treats me like I'm an object, not a person. And she can do the same things when in a hurry. It's like we are just things to her, not people, and the more severely impaired we seem to her, the more we are objects.

And she does a lot of things primarily for her convenience. Once she forced someone I know to stand up rather than get the bed bath he needed because it was slightly easier for her, and it exacerbated the injury that put him in bed to begin with. she didn't appear to care.

None of these are the attributes of someone who we all miss when she's not around. Let alone someone we feel we couldn't do without.

But her statement worried me a little. So I asked around. It's handy at times to live in a building where a lot of people have the same caregivers. Especially the people who bathe us, like her. They tend to be shared among more of us because they only come for the duration of the bath and any other personal care they provide.

Anyway, it was not hard at all to find someone who confirmed my suspicions more than I ever guessed. It seems that she has written it into her will that her pets are to be killed when she dies, because nobody could possibly care for them like she does. That's more of a warning flag than I wanted.

People have an obligation to our pets. And part of that obligation is to do everything in our power to ensure that they will have a good life if they outlive us. I know that Fey will miss me greatly, and I hope that she will not try to starve herself if I die. But I have plans set up for AnneC to find her a home or, as an absolute last resort, to take her in until she can find her a home. I would never have her killed just because I was dead.

To kill your pets when you die is selfish and reflective of a really disturbing and warped take on the world. Part of that take on the world is almost always “Nobody could take care of them like I do.” Which is also a huge part of the mentality behind a lot of animal hoarding and other abuse.

It works the same way with humans. “Nobody could take care of you like I do” always results in messed up behavior towards the person in question. It can range from minor abuse and neglect, to murder.

Parents who think nobody but themselves can take care of their disabled children are disproportionately represented among people who murder their disabled children. They often don't seek out help to take care of their children, and don't plan for a future when they are not around for their child. This means that even if they don't kill their child, they're setting them up for the awful situation the parent sees as inevitable after their own death. It becomes a self-fulfilling prophecy. Whatever they believe, this is not love.

And caregivers who think this of their clients can be just as dangerous. At minimum they abuse their power over us. They may try to get us to see other caregivers as not very good. Even when they're better than the person in question. They frequently treat us like things, because to see someone in this way is to fundamentally see them as a thing. And at worst, they too can kill us.

I know a disabled guy who dated a nurse who had this attitude to her patients. He believes she was an “angel of mercy” serial killer who killed several of her patients. (Such serial killers are far more common than the Jeffrey Dahmer types, but receive little attention from the media or law enforcement. Their victims are only disabled people, after all.) She frequently talked about killing all her pets and everyone else who depended on her before she died. He realized she saw him in this way, and got out of the relationship fast.

I don't think that this caregiver kills her clients or anything. And I don't think I'm in any serious danger of more than being treated like an object by her, or else I'd never allow her in my apartment. But knowing this about her means I can be on my guard for more serious warning signs in case she does anything more disturbing.

But in general. Any sign of “Nobody can take care of you like I can” should put you on your guard. It nearly always results in something bad, and sometimes results in catastrophic abuse or neglect, or killing.

Posted with Blogsy

“I don’t know that person’s program.”

That's a sentence I've heard a lot. And when they don't say exactly that, they say things that mean the same thing. Usually in the developmental disability system, for some reason, although I can easily imagine it in other contexts.

What it really means:

“DD people aren't like regular people. When people do things to them that would be horrible if they happened to other people, there's always a logical reason that justifies whatever is happening. Staff and case managers rarely if ever abuse power. All of their decisions have the best interests of clients at heart. So if something looks terrible, chances are that there's a reasonable explanation behind it. I just don't know what that explanation is. And I likely never will, so I'm not going to judge.”

They say this when staff scream at an old woman with an unsteady gait every time she falls, and refuse to help her get back up or allow her to hold onto things for balance.

They say this when staff publicly humiliate a man who clearly has trouble moving to avoid obstacles, when he accidentally bumps into someone.

They say this when staff do their best to keep a boyfriend and girlfriend apart. Or when staff are okay with boyfriend and girlfriend, but balk at the idea that two women with intellectual disabilities have fallen in love. As if it's even their job to decide who can love who.

They say this when parents simultaneously put on a big public show of wishing their son could move out on his own like he wants to, but sabotage his every attempt to do so. Because they had planned out a whole life for him in the group home they run, and can't handle the idea that he doesn't want to live under their control the rest of his life.

They say this when a staff person kisses a grown man's leg and says “I kiss you boo boo aww betta!” in baby talk.

They say this when, in the name of integration, staff prohibit disabled people from speaking or socializing with each other. I just saw an instance of that last one, which is why I finally remembered to write a post on the matter.

They say this when we get outright tortured. Tied down. Skin shocked. Slapped. Pinched. Made to smell ammonia.

I wish I could upload the scenes from real life that play out vividly in my head. But like as not, people likely to say these things wouldn't consider me a reliable observer. They never do, when you start pointing out the truth. When you see yourselves as people. With all that this means.

Suddenly you are either too severely disabled to understand what's happening, or you're not disabled enough to grasp why treating people like dirt is necessary. Or both at once. And they'd much rather you were highly submissive, maybe even the really cool type of client who helps staff out by giving them information about other clients.

All of this requires seeing DD people as less than. It just has to. There is no other way to justify these actions towards us.

And I know how people see us. As in, I know what we look like inside their minds. Sometimes we're human — almost, anyway. Not quite. There's something vitally important inside every real human. And to them, we either don't have it, or are missing large chunks of it. So we go around in human bodies but there's pieces missing in our minds and our souls. Even people who don't believe in souls in any religious sense, still perceive something inside us as only partial.

I know this because this is one of those viewpoints that isn't content to stay in the minds of others. It tries to force its way as deeply into us as it can manage. Until many of us look in the mirror and see only part of a person.

I can't describe the violence that involves. It's horrible. And a whole system of relating to us, forces its way into our lives. It tells us that we are taken care of, that we can relax, go to sleep, almost. And then it suffocates from inside. There's no words for it.

I suspect the drive to say this about people comes from several places at once.

If you work in the system, there's not wanting to see yourself or your coworkers or people who could be you, doing something horribly wrong. Much less on a regular basis.

I also suspect a strong desire to trust the society they live in, not to do horrible things to people. Or at least, not to do horrible things to certain kinds of people.

A member of my family once told me that it took him a long time to believe what happened to me in mental institutions. He said that in order to come to terms with the reality of the abuse, he had to destroy a strong desire to believe that the society he lived in was safe and just. Him telling me that was far more honest than a lot of people are.

That desire to trust society gets in the way of understanding every kind of injustice. I am amazed that people trust a society that does its best to shut out and destroy all but a handful of people. But they do.

And not seeing us as quite exactly people, is the one thing that you can't avoid if you think like this. Because if you see us as people, you have to see what happens to us as dreadful. And you don't immediately, upon being told of the latest awful thing, say any variant on “I don't know that person's program.”

Posted with Blogsy

How to solve “behavior problems” without having to learn self-control.

Many years ago, meetings with my case manager tended to involve shouting and cussing. Mainly on my end. Today, our biggest problem during meetings is whether I'm physically and cognitively capable of holding a serious conversation at that time during the day. I would love to take credit for this by saying I learned a lot of self-control between then and now. But I suspect that even if I have, that's not what really changed things.

Like a lot of cognitively disabled people, I am not capable of keeping track of the dozens of things that have to happen for my basic needs to be met. And I really mean basic: Food, water, clothing, bills, hygiene, shopping, and medical care. Unlike a lot of states, the DD agency here only serves cognitively disabled people — you have to have an intellectual disability or autism, cerebral palsy doesn't count. So you would think they'd require case managers to be organized enough to meet those needs. You would think, but you would think wrong.

My case manager back then was a nice enough guy on a purely social level, but he was not an organized person. At all. So he was able to do a few things, but other than that he gave staff very little direction on how to consistently do what I needed. Meanwhile I was unable to even know most of what needed to happen. So stuff. Very necessary stuff. Lots of it. Wasn't getting done.

This meant that I pretty much lived from crisis to crisis, discovering a different gaping hole in my care each week. My case manager, having lots of power and being unwilling to face his role in these matters, kept telling me that these things were not his problem.

The more time went on, the worse things got, and the less he was willing to take responsibility for what was happening. So he blamed me. Nobody could possibly keep track of this many medical problems and appointments at once. I was unreasonable to expect basic care. There was no possible way to meet the needs of someone like me. I was the problem.

I kind of wanted to survive. So the more time went on, the more often I chewed him out for not doing his job. And the more frustrated I got, the more he treated me as if I was the one doing something wrong. Because hurting his feelings was worse than him forcing me to live in perpetual crisis mode. And it was perfectly reasonable to simply deny I had needs rather than work to meet them, right?

Towards the end, he began to get snippy and snarky. If I brought up anything he wasn't doing, he'd get this twisted smile in his voice and say, “Well maybe your new case manager will be able to do this.” Even I could pick up the implied meaning: that it was unreasonable and demanding of me to expect anyone to do these things, and I would soon find this out when I got a new case manager who would be just as incapable of keeping track of these things as he was. Then I would be forced to admit how impossible it was to meet my needs.

Except it didn't work out like that. At all.

My new case manager was a young woman. She was organized and efficient. And within a month or so, she completely turned my life around. I could finally rest, because I no longer had to keep a constant lookout for things going wrong.

And my reputation changed. Suddenly they considered me reasonable, polite, and civil. They acted as if I was the one who had changed. But I wasn't. What changed was my situation. It's hard to be nice — hell, literally fatal to be nice — when it's your life on the line, when there's a different crisis or three every week.

Yet that's exactly the position a lot of agencies force disabled people into. They don't provide adequate case management, and the outcome becomes our fault. We are forced to fight for basic necessities. When we do fight, they take that as evidence that we are capable of keeping track of our own needs without any extra assistance. We become not their problem.

From what I've seen, a lot of disabled people die this way. With help from friends, I've been able to catch situations like that. But not all the time, and not before the situation becomes dire. The amount of emergency room visits I used to have due to dehydration alone is astonishing compared to what I have today. It used to be routine for me to get fluids in an IV on a regular basis, because nobody was helping me drink water or Gatorade.

So the situation becomes this: If we don't speak up, they presume everything is okay, because if it weren't, someone would say something, right? If we do speak up, they presume everything is okay, because speaking up proves we are competent to track these things and direct support staff on our own. Plus,if we spoke up in one instance, then our failure (inability) to speak up in other instances means nothing's really wrong, because if it were, we'd say something. “You're such a good self-advocate,” they say, when they really mean “If there was another problem, you'd say it.” If we routinely end up in severe medical trouble, that's only to be expected given how many medical problems people like us have.

Needless to say, my being alive at the moment owes a lot to coincidence.

They also take signs of desperation as just happening, with no context attached. So our justified terror and anger become behavior problems, or psychiatric disorders. Or it's just part of who we are to be demanding or nasty. I'm still not certain my agency perceives the change in my behavior as a response to a change in context. They probably think I mysteriously learned self-control, or finally matured past being demanding.

No. My needs got met. That's a huge difference between that, and some kind of change on my part. If they went back to screwing me over and blaming me for the consequences, I'd probably go back to yelling at them.

Posted with Blogsy

update: Friday Protest at MPP’s office and CCAC, and Minna’s eating again for the time being

I don’t know anything other than having received the following notice, but it seems like a very good sign. The notice I received contains places (far better than here) to get updated information:

We Are Protesting:

FRIDAY JANUARY 23rd from 8AM until NOON in front of MPP Rick
Bartolucci’s office located at 93 Ceder st, corner of Ceder and
Lisker, the Canada-Broker Building.
Then at NOON we are Marching to the Community Care Access Centre
which is located in the Rainbow Centre 40 Elm St, Suite 41-C the
north east corner of the mall at the corner of ST Anne Rd and Notre Dame Ave.

For Further and Updated Information:

Facebook Group: Minna’s Hunger Strike – Call to action for an ALS patient denied care

The Sudbury Star article

Youtube: Sudbury CCAC Exposed

Have also received word that Minna is eating again for now — but that doesn’t mean the situation is resolved by a longshot, it just means she’s not for the moment starving to death, she’s “just” totally lacking in all other aspects of necessary care. (Which is terrible enough as it is.)

Check those other websites for continuing updates, since they’re far more direct than looking here to see if I’ve found out anything yet from a distance and had time to blog it.

Anyone reading this who can do something — please do, because Minna’s dying otherwise.

(Edited a few times as thoughts pop into my head.)

It turns out I know the woman described in this article (which is frankly terrible — it makes this look like a “right to die” case when it’s a hunger strike because of being denied services):

Mettinen-Kekalainen is alone, bedridden or confined to a wheelchair, unable to change her adult diapers or bathe herself, and in constant pain.

Her only source of nutrition is the feeding tube in her stomach, but she is refusing to let friends administer the four cans of supplement she should be receiving daily.

Once the subject of newspaper articles about her indomitable spirit in coping with ALS and a role model for people raising autistic children, Mettinen-Kekalainen (who also suffers from Asperger Syndrome, an autism spectrum disorder) is not receiving home care.

She says it’s being denied by the North East Community Care Access Centre because she complained about nurses contracted by the organization whom she claimed were not following her doctor’s orders.

I had not heard from her in years, and did not know she was living in such awful conditions (by which I mean the lack of care). I don’t think the hunger strike is a good tactic at all — it’s giving this agency exactly what they want. Hunger strikes only work if people care whether you live or die, which this agency obviously does not. I’m afraid they’re just going to hold out until she’s dead. But this is the situation, and I certainly can’t talk her out of it, so someone needs to get something done before that happens.

I didn’t know what was happening to her until moments before writing this. I know, however, several people, including myself, who have physical conditions in addition to autism, and who receive or require what most people would consider very intensive services as a result of the combination.

I have watched several of them end up being accused of being somehow dangerous or abusive, merely for advocating for their right to appropriate care.

Our non-typical social skills make us especially vulnerable to being sidelined and accused of improper conduct, and to others believing it even though it is not true (and make no mistake, people intent on doing us harm use that fact to their fullest advantage possible).

But in any case, even if we were truly the most hateful people on the planet (which I know Minna isn’t, and neither are the people I know — and Minna couldn’t be any threat to them even if she wanted to be), that would be no reason at all to refuse to provide us services.

The truth is that many physical disability agencies don’t want to provide services to people with developmental or psych labels — they figure that’s someone else’s problem and they think they’re above having to deal with us. So those of us with combinations of developmental, psych, and physical conditions (the strict divisions between such being largely societal anyway — with some conditions even seeming to have more than one different name depending on which branch of medicine claimed them first) often end up falling through the cracks and dying as a result.

Last I heard, nursing agencies are not allowed to administer the death penalty for having a bad attitude or unusual social skills. But this is exactly how many of them handle people they consider problematic. I have watched other such agencies, as well as staff in nursing homes and mental institutions, fail to provide necessary services for survival, to people who needed them, because they did not happen to like the person. There is a reason that serial killers and other people of questionable conscience like such jobs — they can characterize someone as a problem, or as “dying anyway”, and get away with this crap, especially because there are double standards where if we are violent, or even possible to mischaracterize as such, then it’s because we’re defective and if other people are violent to us then it’s also because we’re defective.

Don’t let the newspaper fool you — it talks about Minna “ending her suffering” which is a classic code phrase (I am terrible at using those, but can certainly often detect them in others) designed to call forth images of her disability as the main cause of suffering, and all the injustice she is suffering as incidental, or even inevitable. It isn’t. Severely disabled people are not committing suicide in droves, most of us are still around. What drives people to despair — and, often, suicide — is having crappy care (often includng abuse) and neglect be the only two options that seem to be available.

And I know, because I’ve seen it, that driving people to despair is a way these people operate. They know that desperate people often kill themselves outright or stop eating. They know that we are in what most people regard consciously or not as an expendable class of people. And they know that they will never get punished for murder if only they can drive us to suicide. (In fact a friend once told me about a guy who never laid a finger on his wife — a disabled woman — but who talked her into suicide by keeping her away from everyone and everything she cared about, emotionally abusing her, and telling her what a burden she was on him, even calling her a vampire who sucked the life out of him. He wrote a book about his techniques and was never charged with murder or even abuse.)

But I have a request for anyone with any power to do anything about this:

Don’t get bogged down in how sad you feel about what is happening. Don’t — if you can do anything more — just write about this. Don’t treat her death as the only inevitable conclusion in all this. Find a way to pressure the right people until Minna gets her services back, free of abuse/neglect and free of coercion to avoid reporting abuse/neglect.

You might not believe it can work, but it can — I’ve done it. This is someone’s life here and something can be done. I know because I’ve put pressure like this on agencies myself on behalf of others — and a hospital suddenly started providing appropriate care to one person, a home nursing agency started providing appropriate care to someone else. (This is a lot of what I do when I’m not on the Internet.) Often what they need to know is that you are watching and that the consequences for them of not providing appropriate care will be worse than the consequences of providing appropriate care. They won’t necessarily do this for any of the right reasons, but find a reason for them to do it and then put as much pressure on as you have to.

I’m not able to do this in this context — I have literally no energy left over (barely enough to write what I do online — and lucky that I was able to write this today, when just as important stories on other days I haven’t been able to), none of the needed connections, and no ability to form such connections rapidly enough. But someone who reads this has to be, I know my blog is widely read. So don’t fall prey to the Bystander Effect where you think “someone else will take care of it, there’s so many people reading this” — people die because of the bystander effect. Don’t let whether you like her or not determine what you do (I have friends who quarreled with her a few years ago, but I sure hope they know that liking someone or not doesn’t determine whether they should live or die — if you take that attitude you’re no better than the nursing agency). And don’t stop the moment you encounter some resistance from the medical establishment — and you likely will encounter it, so brace yourself.

Someone needs to be out there picketing and otherwise publicly embarrassing the agency itself and getting reporters involved in that — putting out newspaper articles that don’t call Minna’s credibility into question or confuse the issues. Someone else needs to be going to the proper authorities on this and seeing if they can get any of them to do anything. I can’t do that even locally right now, let alone in Ontario, so someone, somehow, needs to take the lead in this who actually can.

Don’t take the easy way out here. Don’t find excuses not to do something if you’re capable of doing it, or to do a half-assed job if you’re capable of a… whole-assed(?) one. Don’t let Minna die. And if she does die, don’t let up on the agencies that ultimately caused it by neglecting her when she needed them the most, find some way of holding them accountable.

Holiday “joy”, and assorted communication stuff.

I am starting to wonder whether disabled people who happen to depend on paid staff for everyday tasks have a very different conception of assorted (secular and religious) holidays than other people do.

I’ve had a relatively new staff person and a completely new staff person this week, which has meant not only a lot of important things not getting done, but also a lot of things that are important for them not to happen keep happening. Meanwhile, my friend has had no staff at all some days and completely new ones for very short periods of time other days.

Which is probably why I’ve ended up mildly dehydrated and both of us have ended up pretty exhausted.

Meanwhile, of course, there’s other things going on. My dog has a UTI. I went to the pain clinic only to get poked and prodded around the neck area and made to turn my head in such a way that, whatever combined effects those had, I ended up vomiting, a lot, a few minutes later, and being queasy the rest of the day. My communication device’s USB port finally completely broke, and the loaner the company had been claiming to be about to send me since sometime in November still hasn’t arrived, nor do any staff people know about that since none of the ones who were here this week were around in November.

But there’s sort of a point to this besides whining. Seriously. ;-)

I’m not sure that a lot of people fully get the point that despite a working communication system, it doesn’t mean I’m going to be able to tell everyone what’s wrong at the moment they need to know it. I might not even be able to make it over to the $30ish computer I got for everyone to leave notes and scheduling information for each other on.

There are projects that have been supposed to happen starting since the day I got services here. They haven’t happened. I don’t know why. I do know that repeating myself about them occasionally doesn’t seem to do much. I’m told people are “working on” them. I haven’t seen the finished product.

I’m supposed to get a handicapped parking placard. Been supposed to for years. Even that, which is simple as projects go, hasn’t happened. Despite the fact that everyone on my support team has strong incentive for it to happen, especially in the winter with the chair and so forth.

I guess I’m not a very good nag. Especially when I find myself only able to communicate things to the people around me that don’t necessarily have to do with everything I need to communicate. There’s this weird assumption going around that if someone really needs to say something, it’ll get said, if they have the means to say it.

I don’t work that way. I have a long medical history, noted in my records (often by the staff who’ve had to deal with the firsthand results), the worst parts of which often result from me not working that way. Which reminds me, several medical professionals in about three different disciplines have been telling me I ought to consult with a surgeon soon. (I have this weird image of pulmonologists sitting around telling gastroenterologists something like, “Do something to keep ‘your’ fluids out of ‘my’ lungs.” I know it doesn’t work that way, but for whatever reason I find it sort of amusing to see people in various specialties as owning assorted sorts of body parts.) But I think everyone thinks it’s someone else who’s going to write the referral, and I haven’t been asking (in part because too much else has been going wrong and for a fairly large part of this month I wasn’t even usually awake). And then when I do talk to that doctor, all possibilities (whether having surgery or not having surgery) are somewhat scary and I’ll have to actually make decisions.

But it’s not even just medical stuff, it’s everyday stuff. I just don’t say it. Can’t always say it. And there’s so much of it. Sometimes the sheer amount of stuff I’ve got to say is the reason I can’t say it. Sometimes it’s the fact that if I told one part of it they’d do the wrong thing and I don’t have the energy to tell them how to do it right. There’s just a lot of stuff not getting done and very little of it that I can communicate about. It’s not that I’m not trying, either. It’s just there’s so much of it. I remember a staff person who got to know me really, really well, who just assumed that (where I lived before) when she left the house I got up and did a lot of stuff. She had no idea that I sat around in one place most of the time, and that this was the reason she would leave when I was in that spot and come back to find me in that spot, despite me having a need and desire to get up for a wide variety of reasons. (She did find out when I turned up with dehydration eventually and she asked a few questions that elicited the answer.)

Ideally eventually everyone will know it or a large portion of it. It’s just amazing to me how haphazard this process is. It turns out I’m some sort of strange beast the agencies haven’t encountered much: I am my own guardian, I communicate for myself, I receive their services, I’m classified by their testing system as severely disabled, and I have no clue how to tell them all this stuff that they normally hear either from their clients or their guardians. Usually, at least ideally, there’s supposed to be some other person pointing out what’s needed, but there’s nobody like that for me. My parents are across the country. I’ve got one friend here who has enough trouble directing her own services. I end up reading assorted manuals designed for everything from physically disabled people hiring their own support staff to parents of disabled adults trying to set up assorted support programs, trying to find something that would contain the lists of stuff that needs to get done around here. Sometimes I find stuff and sometimes I don’t, but nothing fully covers it. So in the meanwhile I just keep getting told how strange I am (first words out of one case manager’s mouth was “Our team (the one for people without roommates) doesn’t deal with people with this many needs this often”, and I spent the rest of the time he was my case manager trying to keep him from forcing a roommate or worse on me.)

Somehow there has to be something that can provoke the list of answers that would allow me to say what needs to get done around here (beyond the checklist assorted staff have already developed on their own). But so far I have not found it. And none of this situation seems fair to either me or to people who have to work for me (but who aren’t told much if anything, and of course with funding this low are not allowed to “shadow” other staff for very long before starting). There also needs to be some central point for information, and so far that’s only partway accomplished (and large, large pieces of it have not even been started, nor am I sure they ever will be unless something changes).

The difference between what’s normal for someone and what isn’t.

I remember being confused about something that happened during my first Autreat.

After Autreat, someone was talking about how surprised she was to see a particular person having a particular kind of trouble. (I’m being vague on purpose, the kind isn’t all that important and the people involved probably want to be anonymous.) I was surprised how focused she was on this, given that lots of people there (including me) had the same kind of trouble and she did not seem alarmed that the rest of us did. I asked her about it but she hemmed and hawed more than she gave an actual answer.

I eventually got an answer from a friend of hers that was more blunt: “Nobody looking at you expected you to be high-functioning enough not to have that trouble anyway.”

Oh. (Keep in mind at that point I regarded myself as being, and looking, extremely “high functioning”, and believed in functioning levels. This was awhile ago. But, more to the point, I didn’t always have that trouble to the extent that I had it after flying across the country, especially after getting stranded between flights.)

Today a guy came over who works for the nighttime emergency service I use in lieu of a roommate. Normally, they’re sent over here for bad situations. Often I’m some combination of very ill, in pain, and immobile. Apparently there’s some mandatory part of the program that involves them coming out and meeting us on an ordinary day periodically. And I’m beginning to see why.

Someone who mainly sees me during emergencies is going to have a much different understanding of what my baseline abilities are, than someone who sees me on an ordinary day. In fact, a person who doesn’t know me well could easily mistake the way I’m doing on a bad day, for the usual, and thus not really worry even if I’m showing clear signs of something being incredibly wrong.

This isn’t just true in medical situations, either. People who worked for this agency have disregarded signs of emotional stress on my part before because their presence caused me enough stress that they never saw me un-stressed. When my friend had to explain to them that normally I’m a fairly animated person and don’t sit meekly in a corner saying yes to everything unless I’m terrified out of my mind, they had trouble believing her.

So it actually seems like a really good idea to have people get familiar with what someone is usually like, even if what they’re normally going to be dealing with is emergencies. That way, they can tell the difference between something being wrong and something being normal for that person.

(BTW, the recent absence of posting is because I’m working on a video about my cat, and cats take a lot of time to film, at least in the contexts I’m trying to film her in.)