Monthly Archives: January 2009

Jan21

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

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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.

Jan20

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

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(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.

Jan11

Information isn’t power on its own, unless it’s used in the right way.

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First an explanation, as much as I can give, about the current situation and why I’m not blogging a lot:

I haven’t had either much to blog about or much capability of blogging lately. Mostly due to not having any time or energy left over, after a bunch of serious offline responsibilities, to take in more information and figure out what to do or say about it in any sort of public manner. I don’t like to post online just for the sake of posting. And I don’t have an ounce of energy or a second of time to waste, I have had to become much more streamlined than I already was. Which was pretty streamlined already.

I also don’t believe in saying anything when I have nothing to say, or when I don’t understand what I’m saying (that habit, which was once a survival thing, has long outlived its welcome and has harmed far more people than just me, and I’m sorry — and I do my best to avoid it at all costs, since nothing good ever comes of it). I do believe that in order to be able to do anything useful, I also need time when I’m not doing public writing, or a lot of public reading in a particular area. This is a brain thing. It works that way and I’ve never been able to stop it from doing so.

My ability to use language has always outstripped my ability to understand it, so more than most people I know, I really need a lot of seemingly unoccupied time to just figure out what’s going on around me. Eventually all the information settles into the back of my head getting more and more detailed as time goes on. Then, eventually, some event triggers a response that uses that information. Can’t pull that response out on purpose, it’s just wasted effort. And I now refuse to just repeat what someone else wants me to say (and I have had a lot of people tell me I really need to publicly talk about whatever their pet subject is, but since I can’t understand them, and/or can’t form words around them, then I can’t say them, end of story). But it will eventually show up when I’m least expecting it.

So some events today have triggered one of those responses. Don’t expect other responses forthcoming just because these ones exist. I still have from no time at all, to at most, two hours of ‘uptime’ for things like this per day, and that’s how it’s going to be for the foreseeable future. If anything takes up too much of that time with no useful return (and I’m the only one who can judge that against a lot of other things that are very important), I’m just not even going to respond. The stakes are too high, and that time is in too much demand already for other things. This is how it has to be, and it’s why I’ve taken on few to no online responsibilities lately.

Also, as I’ve noted many times before: Don’t assume this is about autism. I’m an autistic person, it doesn’t mean that everything I do or care about centers around autism and autism alone. As was pointed out to me again recently — I’m a person who applies values and skills I already have, to autistic people’s situations, as well as lots of other situations I happen to come across. Nothing about the world I currently inhabit has little walls around an “autism section” that I have to stay in.

Anyway, blogging is a way of getting information from one person to the next. It’s one of many ways, but it’s a way to do that. Getting information from one person to the next is a good thing as far as it goes and as far as it’s useful.

But it’s not the only thing required to actually get something done.

Right now, though, my problem is less with bloggers (since I figure, like me, they might be doing a whole lot in the offline world that I can’t see, and I know that, like me, many disabled people find themselves only able to do this stuff), than with organizations.

I’ve seen a lot of organizations in my life. I’ve tried to take part in a lot of organizations in my life. And I’ve gotten pissed off at a lot of organizations in my life.

Because a lot of people seem to think that all you need for an effective organization is some combination of good intentions, a nice website or office, nice letterhead, a board of directors following some utterly standard model of non-profit setups, some money, some office skills, and some means of getting information passed around between a lot of people (conferences, leaflets, newsletters, articles, little booklets, weekly meetings where people sit around and talk, etc.). Bonus points if you can find any rich or famous connections and hold fundraising events. Maybe some trendy liberal protests too, where you can hold up your sign that has nothing to do with the actual substance of the protest (if there was any).

And everything — everything — eventually boils down to that act of passing around as much information — especially proper information — as possible. And, how could I forget, lots of mutual ego-massaging, patting oneself and everyone else around you on the back just for being there.

It’s an entire culture. And it’s a culture I have tried to work within at times because sometimes it’s at least marginally better than doing nothing. But it’s a culture I feel immensely out of place within.

Because it’s empty. Scratch the surface and all the fluff just starts falling apart. There’s nothing left when you really need something done.

I’m one person, with limited mobility, limited energy, and limited time. But if someone asks for my help in an advocacy context, then I will do everything I can to actually help them in some sort of concrete way. The same as I would want if I were in their place. If I can’t help them, I will try my best to find someone who can.

And there’s the problem: Where do I look if I don’t know anyone personally?

I try to find groups of people who are united around the same problems that are happening to the person right then.

And most of the groups I find… they’re not into anything practical. They’re into passing information around in circles, and being very happy with themselves for doing so. And being all proud and weepy-eyed about its mere existence, which mostly just feeds people’s complacency, the same complacency that causes the scandalized growling of “We’re already doing something for you people just by existing, now leave us alone.”

(And thus, many people with far more time, energy, and power than I have, end up failing to use it at all for anything other than reciting the names of other organizations to people (with a hopeful “let’s get this person out of our hair” air), or repeating that, say, if they’re homeless, then a box of pamphlets on how to cook with equipment they don’t even have, would be just as good as a box of food. Wish I were exaggerating.)

The problem in most situations where immediate practical advocacy is needed, is not information. Yes, information is often necessary. No, information is not bad, in and of itself, it can be a very good thing. But it’s a means to an end. It’s not the end itself. The problem in most of these situations is things like power, money, and resources. Not endless workshops, pamphlets, and meetings about how bad the system is, with no actual move towards holding the system accountable for their actions and finding ways to get them to do the right thing.

And I’m in yet another one of those situations. Someone needs practical help navigating this mess, from people who are experienced in actually fighting against all kinds of injustice. But all I can find are these shiny feel-good liberal organizations who, as a friend put it, “…you, me, and [Jane] are too unimportant to be anything other than nuisances to them.”

(And I’ve found that even in organizations that somehow I’m now considered, usually by virtue of CNN or something, important enough to matter to, most of the people I care about aren’t, and are treated quite differently by them than I am. At least to my face. This is frustrating — I can still usually smell the scent of pseudo-organization on them, but it’s no longer as immediately obvious in their treatment of me as when I used to be nobody important to them. So I don’t always get the warning as fast or loud as anyone else does.)

It’d be nice if organizations were groups of people who all, individually, were involved as continuously as possible in making various things happen on a real-world level on a regular basis. And who came together to become more effective in numbers or in diversity of skills, or to learn from each other how to get things done in the real world, even how to use information to make real things happen for real people.

But most of the time they’re just groups of people who all decided one day “Hey, wouldn’t it be great to start an organization dedicated to our pet cause?” And who thought that starting an organization was the same as doing something. And it’s not — no matter how much money, love, dedication, information, and good intentions are poured into an organization, having the organization is not doing nearly enough.

I’ve said that in enough ways, and used up enough of the time that I’ve got to say it within, that I’m going to just leave it at that, even though I haven’t described everything I wanted to. I’ll now return to the regularly-scheduled silence for awhile unless some other situation leaps up and demands to make its way out of my fingers. I haven’t dropped off the face of the planet, just most of my life is not, and can’t be, online right now.