Author Archives: Mel Baggs

About Mel Baggs

Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.
Nov17

This is not the post I started out writing.

Posted on by
Standard

The next disability blog carnival’s topic is intersectionality. Intersectionality is one of those words that does not slide completely off my brain, the way ‘monotropism’ does, but slides partially off my brain and is not a word I would ever use except in paragraphs like this one.

It is a word normally used by people within a very particular way of looking at oppression. And among people who may not be exactly within that category, but who take the word from those who are. I don’t even know the word for that category, although I can usually recognize it by the sorts of words it uses. As long as it is not too abstract, I greatly appreciate reading from things in this category. But I am not myself someone who can work within it (may have something to do with this post, which is in no way an insult to those who can work within it). Intersectionality refers to the way that being oppressed in more than one way at a time (such as being disabled and black and female) combines to make an experience more than just the sum of its parts.

I have spent all of the time since the blog carnival was announced, trying to write on this topic. The results in no way compared to some of the brilliant writing I have read from others. In fact, all they compared to were past efforts to write homework assignments I barely understood by plugging in words to a formula and straining my brain to the point of pain (rhyme not intended) trying to come up with more words to fill in the blanks.

I started out by listing the current categories I fall under when it comes to being subject to various forms of oppression: female, disabled, lesbian, mixed-class/poor, nongendered, and fat. Then I added a few notes under some of them.

1. (Disabled.) Specifically, I’m physically disabled, cognitively disabled, psych survivor/ex-patient/mad/etc. take your pick, and have chronic illness and chronic pain. All of which are sometimes lumped together and sometimes play out very differently from each other. And while these categories stem from the medical model, they also often reflect ways that even the political aspects of the disability communities have divided themselves, and thus become relevant as more than just medical categories.

2. (Mixed-class/poor.) Born middle-class, been poor by my country’s standards since adulthood. Because this has to do with disability, I am not the sort of fashionably downwardly mobile person I often read about who can always go back to the middle class or even the working class but chooses not to because it clashes with their values or wishes. I know enough from having talked to people who grew up poor and working-class that I’m quite aware I have plenty of middle-class privilege that can’t evaporate no matter what happens. My self-description as poor is not an attempt to erase that, but rather an attempt to convey the reality that I am subject to major classist oppression that will last the rest of my life no matter what choices I make. Permanent, involuntary downward mobility exists in the world, even if I’ve virtually never heard it discussed when people talk about classism. Which itself probably has something to do with the fact that disabled people are invisible, and that most discussions of classism seem to revolve around the struggles of the working class. And the fact that people expect class to be simpler than it is, either you are or you aren’t a particular class, when things are more complicated than that.

3. (Nongendered.) Neither cisgendered nor transgendered. Gender is a concept that, while I understand intellectually that it is greatly important for other people, is entirely absent and incomprehensible to me. I imagine that it must be some collection of aspects of a person’s identity that all cluster together in most people’s minds, whereas I’ve spent my life oblivious to how they are connected or why I would want to connect them, and innocently trampling all over people’s ideas of what it means to be masculine, feminine, or even any particular point in the middle. For more information, read Urocyon’s Gender, Sexuality, Identity, and Binaries or, if you can get it, the article “Growing Up Genderless” by Jane Meyerding in the anthology Women from Another Planet?

Then, I set about writing about how those things mixed around make life much more complicated. Most of the things I could come up with were the obvious: my status as what a friend called a “perpetual outsider” in single-issue, single-identity communities. Even in the autistic community, where I have found (unasked for and unlooked for) status, I have found no belonging. How could I, in a community where it’s impossible to go anywhere without hearing some other aspect of my life (even some to do with autism itself, since I am far from the right kind of autie) degraded, denied, and disparaged? Even the “status” has been given to a distortion of my life, not to who I am. And the same is true of the LGBT community, disability community, feminism, and all the others. I have only to walk into an LGBT community center to find a gay man who is inspired by my presence to tell me how he used to work in an institution where there were people who looked like me, where he would stand over the cribs of some of the inmates and ask (insert pained voice) “Why are you alive?” And who wants my sympathy for the agony he feels at the existence of disabled people. Seriously. This happened.

(For more on that kind of topic, see The Difference Slot, by elmindreda, who eventually left the autistic community over such experiences.)

The original thing I wrote was full of stories like that despite them just being the tip of the iceberg on this subject matter. And I grew more and more frustrated as I fit my writing into a formula that did not at all convey my thoughts. Then I decided I would rather write nothing at all than write what I didn’t mean. So here is what I do mean:

I can’t write a lot about intersectionality as a topic because I don’t ever not write about intersectionality as a topic. Every single piece of my life that I describe, is the life of someone who falls under multiple categories. I write about these things by becoming very specific and writing about things I do and experience. I write as one single instance of life and expect people to fill in the broader context on their own. And from that broader context, they can use it to think about situations that at first glance are nothing like mine.

The way I experience these things has no equivalent in words, that I know of. It is like being acted upon by a large number of separate gravitational forces that push and pull in a physical-seeming way. It’s possible to name specific forms of oppression that are recognizable to everyone, but the way I experience these things isn’t as simple as listing off sexism, ableism, etc. As with most of life, I experience a much higher degree of detail in these gravitational forces that push and pull on me, than there is in the words. So why divide them in the exact way that they are normally divided? Why say that there are six things, when you could say twenty, and why say twenty when you could say a hundred? These are just shorthand for the more complex forces at work in the societies we live in, and it is important not to forget that in these often hyper-abstract discussions. I understand very much why a common language is important, but sometimes it obscures as much as it communicates.

So I will continue to move through the world (and the bits of the world that are around me will affect me, and I will affect them) and write (when I can) about specific aspects of my life, all of which have something to do with this thing they call intersectionality, whether that’s the topic of the day or not. Because I don’t stop being all these different sorts of person, when I stop specifically naming them.

Nov2

Blueberries

Posted on by
Standard

All of these articles are from one blog, flip flopping joy:

berries. blue.

The ABC Report about blueberry field abuse

up close through others’ eyes

Read those before responding to this post.

This is the first time in my life that MY community has been highlighted on national television. I mean…the place I worked. The place I have memories of. The place my body has memories of.

Not just “community” that I count myself a part of.

~has that ever happened to you?

It changes how you see things. Because you see yourself for the first time through the eyes of others. Up close. You can feel their breath on your skin. You can smell their perfume.

And you know what they think of you.

Not abstract you, not “identity you claim” you.

You.

She asks, has this happened to you, and I reply, [utterly inadequately compared to what she wrote]:

Not identical — we’re from different communities, and the issues are different. [Hopefully it’s obvious what I mean by different communities, even though this isn’t about “community identities’, etc. I’m not going to add any more disclaimers though, or I’ll never be able to write this.] But similar.

Every time they find torture in institutions, and try to fight for pointless regulations that won’t even stop the obvious torture, let alone the day-in day-out degradation and dehumanization that changes and smashes and wounds you inside worse than any physical torture ever could.
Reading the detached and clinical reports [from the agency that uncovered the abuses], and the news reports, about institutions that I was in, some of which I was in at the time the reports were being made. Remembering what the real issues were and that nobody who writes the things ever gives a damn about them, or about those of us who lived there, or about anything other than us as a symbol of mute helplessness and things that happened to us that we accepted more than we accepted the worst things. It fills me with feelings so powerful I can’t even name them. And I cry. Or I pound things. Or I just lie there immobilized by the feelings. And I never know how to explain it to anyone, even though I try my damnedest all the time because I know with my whole being that this is what matters [and so few of us are talking about it where people hear, it’s so much easier to just forget, and so difficult to put a finger on]. (And yet know that many will discount me because I’m the sort of person who ends up in those places, after all. Not reliable. Not real.)

Oct23

Stuff I’ve been reading.

Posted on by
Standard

I am still in a mode where my brain is prepared to take in much more than it is prepared to spit out in the form of useful words, and I am still unaware of when this is going to change. However, I have for once been doing some reading of other blogs (including some fairly old stuff people have written), and therefore have links to various posts I find especially good or interesting:

At The Perorations of Lady Bracknell, there is a post called Chestnuts Roasting on an Open Fire. If you’ve ever been tempted to think, “the social model of disability says that impairments aren’t ever a problem,” or “the medical model of disability is the stuff doctors ought to be dealing in,” try to read this post. (Well, even if you haven’t, it’s a good post.)

The owner of Existence Is Wonderful has just rescued two feral kittens, and she and I have been using online chats to give each other the play-by-play on what our cats are doing, even when they’re sleeping (at which point we do things like try to figure out the exact genes that caused their coloring or something else like that; cats are among our oldest special interests so we never get bored). She has written a great post called October 16 is National Feral Cat Day, which goes into a great deal of detail about feral cats in general, and feral cats she’s dealt with in particular, and… cats in general.

From Urocyon’s Meanderings is a post called Snakes and Boogers, Boogers and Snakes. It’s about the effects on her and her family to this day of generations (starting at least in the 1700s) of kidnapping, rape, torture, and murder of American Indian women and children. And then Weight Changes, Illness, and Diabulimia, which deals with all the things in the title, plus discussions of how medicalized fatphobia combines with racism, sexism, ableism, etc., in the author’s life.

At Turner and Kowalski there’s a post called What kind of a blog is this anyway? Their description pretty nearly fits the outlook I bring to this blog, although I’d never have come up with the words they used and my style is utterly and totally different from theirs. (And I’d probably have added something about the fact that my talents lie in describing specific situations as from my particular ethical perspective, but that the core of what I am applying to that situation, is something that I intend to be read as applicable to a much wider variety of situations than the one I happen to have written about.)

From FWD/Forward, there’s a post called The Negative Side of Positive Thinking. This is about the scary/disgusting/dangerous flipside of the BS that is “The Secret,” the “Law of Attraction”, etc. (Otherwise known as the Just-world phenomenon, otherwise known as if you’re oppressed or sick or in any other bad situation then it’s your own damn fault for being too negative.)

From Wheelchair Dancer is Butch/Femme — Crip. About how disability meshes with gender and sexuality, and other people’s perceptions of the author in these areas.

From Shakesville is Soaking in Normalcy Fetishism, or: The Unmiseducation of a Fatasspie. Which… hmm. Some parts made me go ‘meh’, but as a whole is very interesting. A combination of a person’s adult diagnosis of Asperger’s, and her growing realization of how messed up what she calls Normalcy Fetishism is.

From Rolling Around in My Head, Your Daughter made me cry. All the things that the author has seen in a woman that her parents, who abandoned her, may never see.

And now my eyes won’t point in the same direction, so I’m going to end this post.

Jul24

Breathtaking to behold: talking back to dismissal

Posted on by
Standard

One of my biggest interests is the study of how oppression plays out, and how it is resisted, among communities that most people would consider minorities. (Note: Minority in amount of power, not in amount of numbers. So yes, women count.) Not some sort of study of victimhood the way some people would paint it, but rather how people resist becoming victims.

It is breathtaking to behold communities where enough people have worked out the way things work, that when they are hit with the usual forms of sexism, racism, ableism, heterosexism, etc., they are ready for it. They have answers to the usual bothersome questions and comments designed to disempower them. Even if the people attacking them don’t understand those answers, they at least are told a lot of the same things by a lot of people.

It’s breathtaking because we haven’t reached that point in some of the communities that I work within, including the autistic community. It’s like we’re almost there, but not quite. So a small number of us end up sticking our necks out and a large number seem to either understand but not be able to articulate it, or else not understanding yet what’s going on.

This isn’t because we’re too autistic to understand (which is in fact one of those obnoxious power plays, rather than a reality), it’s because as a community we’re just not quite there yet knowledge-wise. It’s been like this for other communities in the past, it doesn’t have to be like this for us forever. I don’t always even have coherent answers to a lot of what goes on, because this is not easy work by a longshot, but I think it’s work worth doing.

What would be cool is if eventually we all just automatically understand what is going on when people say certain things to us, and from that understanding (plus some time for thoughts to congeal into words), know what to say and how to react. My problem half the time is understanding but not knowing the words.

But imagine that, if anyone ever told us…

…”You’re not really autistic.” or “You’re not really autistic enough.”

(“You just have Asperger’s,” “You’re too high-functioning,” “You understand your situation too well,” “You’re too articulate,” etc.)

…”You’re too autistic.”

(“You lack the empathy necessary,” “You couldn’t possibly understand,” “You lack theory of mind,” etc.)

…”You’re too much like children and confusing us with your parents, somehow.”

(“You’re just like adolescents rebelling against their parents without understanding why the parents know best,” “You’re just like small children who can’t possibly understand the adult world,” “You’re just like little children who want to do whatever you want and can’t understand why your parents don’t want you to do that,” etc.)

Etc.

…then there would be an immediate, coherent response to each one, explaining why this is not an okay way of treating us or viewing us, explaining how the misdirecting of other people when it comes to us works, explaining why this is not okay… voiced by enough of us at once that it would be harder to ignore than the current sporadic response to it.

We’re getting there. See Bev’s Are you autistic? and I repeat myself. But we’re not there yet. And it would be wonderful for a lot of us to work towards this until we are, until we can throw answers back at that stuff easily. Because I’ve been watching these comments thrown at self-advocates for ten years and they never truly change in substance.

[Note also that I’m not going to be taking comments that actually try to explain why those particular ways of dismissing us are actually real or good or right. So don’t bother. Because this blog is about how to work towards this kind of change, not about getting the conversation derailed by people who think we shouldn’t even be trying to.]

Jun1

If I seem to have disappeared…

Posted on by
Standard

I’ve used some version of the following so often lately that I’ve decided to make it into a page of its own, for general reference if I seem to have “disappeared”, but also for general reference if I seem to have “appeared” again after a long “disappearance”:

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 [whatever post I am making] is [entirely or at all] 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.

 

May31

“Intentional” communities… not.

Posted on by
Standard

I wrote part of this in response to a post on the change.org autism blog called Down on the Farm, about “intentional communities” (which aren’t really) built for autistic people (but not by us or with our meaningful input) along with some non-autistic people (who have much more choice and power than we do) in ways where the power structure screams institution even if the shape of the walls doesn’t (some people believe institutions are defined by their shape and number of residents, which is neither the sociological definition nor my definition — the definition I use includes a specific power structure that can occur anywhere).

The blogger’s response was not to actually critique all this in any meaningful way, but just to say:

I like the idea of [my son] Charlie working on a farm. He likes being outdoors and the kind of work one does when gardening strikes me as combining many of the things he’s drawn to do. Judging from his indifference to computers, he’s not likely to be a candidate for doing data-entry. And various sources have been saying to me, they’re aren’t going to be any of those sorts of jobs left when he’s an adult—-??!??!!?

Driving back from the post office earlier today, we saw a father and his young son digging in a huge pile of dirt in front of their house. The boy was younger than Charlie; I could see how eager he was to be helping his dad and I think the fact that he was getting to work with (play in) the dirt had a lot to do with it. Working at a desk isn’t for everyone, that’s for sure (even in the industrial-suburban Garden State—there are farms here).

Which completely misses the point of what these places really are.

I’m reposting my response here because I think it’s an important issue and I am disappointed in the blogger there for her treatment of it. Change.org is supposed to have a strong commitment to social justice and I see no such commitment in this kind of complacency about such a destructive place.

Here is my original post:

———–

I can’t explain why I think these places are a terrible idea. But I do.

Last year, an autistic woman (Danechi of And Stimming with Rainbows of Every Design) blogged about these places in a much more responsible way than they are being discussed here.

Her first post was called, The point of intentional communities is that they are *intentional*.

To quote the relevant parts (which are in response to the exact same community that is being discussed on change.org):

Bittersweet Farms is not an intentional community.

The point of intentional communities is that a person *intends* to live there. If they decide they no longer want to, they can leave. They make decisions about their own lives.

If a person is placed into a community by someone with greater power, forced to stay there unless the person with greater power moves them out, and has important decisions about their life made by those people in power, then they’re not in an intentional community. They’re in an institution.

Yes, even if it is on a farm. Yes, even if they are doing work on said farm.

And no, I will never willingly consider such a living arrangement for myself, even if I think intentional communities have the potential to be really cool, because Bittersweet Farms, and the Sacramento-area farm-institution in the very early planning stages are not intentional communities.

[…]

At most I can only realistically imagine an autistic getting a token role in this planning process. There’s no way we can get a majority. Even if we did get a sizeable minority, the power structures will still be the same, and they’re the most dangerous part of the whole thing.

Googling the name of the person in charge [of SAGE] shows that they’re a Rescue Angel and that they were somehow involved with the Green Our Vaccines Rally. I know what that means from an autism-science perspective, and I’m not happy with it, but I don’t know if it would have any significance from an institution-masquerading-as-pseudo-utopian-community-planning perspective.

Her second post on the subject is here:

I just spent time at another residential-farm/institution’s website reading the rationale for why agricultural life is good for autistics.

[…]

SAGE Crossing’s rationale/justification for concept has no similarity to my experiences, and clashes horribly with my worldview in general (that we should create a culture of inclusion). Theoretically a rural setting might be “safer” for autistic-me. (But is it for someone with my chronic illness? I think me-with-cystic-fibrosis is far better off in a city with nearby medical facilities.)

And there is no way that I’m going to live in a farm just because I flap my hands. People who flap their hands are allowed in cities too, for the record. And if all people who annoyed other people were sent out to the countryside, there would soon be so few people in cities that they would no longer qualify as cities.

Also, what the hell does needing to be anesthetized for routine medical procedures have to do with needing to live on an institution-farm? It seems like SAGE Crossing is just throwing out random stuff about autistics and assuming that people will infer we can’t be included in society based on these disconnected, irrelevant things.

I would like to ask why you don’t deal with these issues in the same manner that Danechi does. It seems to me that she thinks more critically, as well as more accurately and responsibly, about these places than you do. She has put into words things that I could only describe as a vague nausea and feeling of these things being wrong at the core, as well as being my worst nightmare. institution-wise (far worse than nightmares that call up images of totally rough and obviously degrading treatment).

When I say wrong at the core, I mean that the problem is not a superficial issue. It’s not whether some autistic people might like to live on a farm while others may not. (My autistic father grew up on a farm and his farm was nothing like these ones deliberately created for autistic people.) It’s about the power structure. And I am not equipped to explain what, precisely, is wrong with it. I don’t have that kind of language. I just know it’s terribly wrong, and become quite alarmed when I see writing by people who cannot appear to sense that at all. Especially on a site that is supposed to be about working for real change and social justice — which would require far more critical thinking about these matters.

If you want to talk about intentional communities, though, LeisureLand (another page, with photos, here) is a good example of an intentional community created by and for autistic people. And it is nothing at all like these more institutional versions of the same things. The institutional ones have an alluring form (at least alluring to some people) but a terrible substance.

At any rate, on a place like change.org I am highly concerned about posts that seem positive or neutral towards places as destructive as this one, and that appear to take places like this (and possibly group homes, etc., too) as inevitable, or inevitable for people with a certain level of difficulty doing certain things.

———–

…and that is where my original reply ends.

I think Danechi’s phrase institution-masquerading-as-pseudo-utopian-community-planning sums up the situation better than anything else I can think of. That’s what makes all the hair on my body stand up when I read about these places.

I’ve lived in a pseudo-utopian institutional farm community before, and my experiences there have done more lasting harm than straightforward beatings and attempted murder have (well, there were beatings there too, but they were not the worst part, merely the easiest to describe). I am sure such a remark would be really puzzling to a lot of people, but I don’t know how else to explain it. Certainly I was totally cut out for the kind of work there (simple, concrete, and repetitive), and I enjoyed the work-training program very much. Certainly it was less physically brutal than most. But of all the things I have had to untrain myself from in order to survive in the real world, that place has been the most strenuous, and the most resistant to my attempts to overwrite it.

At any rate, it concerns me that someone affiliated with Change.org can write about an institution-masquerading-as-utopia, and have their only response be a set of musings about whether their son might like it there. And it highlights a difference I have noticed between people who look to the core of such a place and find it highly alarming, and people who readily believe the propaganda and proceed to fantasize about how much they or their children might like living there.

Please remember it is propaganda, and does not speak to the reality of having your life controlled that thoroughly. Please remember that people who have had their lives controlled that thoroughly often cannot see the damage it has done until a long time later. You come to expect that kind of control and you forget what freedom was like, if you have ever even experienced it in the first place. And please remember that places created by one kind of people, and for another kind of people (where “another kind” can be understood to be different societal categories even when it’s not an actual difference in essence), are rife with power imbalances and the potential for great harm. And that carefully crafted utopias on the surface are often among the most insidious dystopias under the surface where you can’t get your hands on them in any concrete way.

Jan21

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

Posted on by
Standard

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.

Posted on by
Standard

(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.

Posted on by
Standard

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.

Dec11

autistics.org needs donations.

Posted on by
Standard

autistics.org needs donations again. Right now it’s being operated out of the pocket of a couple people on disability payments, which isn’t a lot. We’re already paring down everything else we can (Second Life, etc) to keep up with the current economic crisis. We’re getting no other money right now. If we want to stay up (especially in high-bandwidth time periods), we are going to need help with it.

There’s paypal and other methods of paying on the front page of the site.

(As usual lately, there are a lot of offline reasons that I haven’t been posting a lot and have even been having trouble even keeping up with the comments. I know some people’s comments are being thrown into the spamfilter and I’m doing my best to retrieve those when able to keep up with the comments at all. I’m operating at full energy capacity at all times lately, so if I’m not getting to something, that’ll be why.)