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.
Ballastexistenz 
Thanks – this is a great reminder to me to keep focused in my involvement with some advocacy groups, towards getting things done rather than falling into this sort of thing.
Well it’s nice to see you back anyway, never mind all the hate mail that is sure to generate from a certain quarter, who fortunately seems to be isolating himself even from the fringe curebie movements.
As for myself I know the feeling of having a desire to do more than I am capable of so far as self maintenance, research, and advocacy goes.
Right now my flat is probably the tidiest it has ever looked, that has been prompted by the necessity for it to be so pending a visit from the fire brigade. It has taken a tremendous effort to get it like that considering the problems I have with my back and joints nowadays and the pain it all causes me. It is really only a cosmetic job too as I have just purchased a lot of boxes to put things in temporarily until they can be properly sorted out, and the chucking in of everything together that used to be all over my floor and every available work surface just makes it harder to sort all that out or find what I am looking for in a hurry :(
Although you did not say it directly I believe the source of all this is lack of real leadership. When I was about 19 I saw a coffee mug that said “Make Something Happen”. That statement really floored me. I had never heard anyone say that and I was not raised by my parents to “make something happen” as I was raised more like I was a powerless peon whose duty in life was to fund employment to pay the bills.
When I saw that message, it dawned on me that most people wish something would happen or talk about it or complain or whine about it not happening. What needs to be done is that a person has to MAKE it happen. The only kind of person who can make something happen is one who is a leader. I don’t mean the head of an organization or a business but just a person who first, sees a need and has teh desire to fix it. They have to have the drive to figure out what practical thing must be done in order to get the desired result to actually happen in real life. It takes a certain kind of critical and logical thinking to figure out what has to be done, the right steps. Then to get through those steps it takes certain personality traits to do those things. One is perseverance and perhaps another is tenacity.
Often times steps to make an action happen are not easy and sometimes are not pleasant. A person has to persevere and keep moving forward. There are also usually problems along the way and people standing in the way. Those need to be dealt with and then get back on track.
People are almost powerless by themselves, even with information in hand. People need other people. A person with leadership skills can recognize their own weaknesses and lacking skills and lacking abilities and is able to find other people to pursuade to help join them in getting that goal done.
One flaw in people who think they are a leader but they are really not is they have grander opinions of their own abilities. When they can’t really get something done and don’t admit it and look for assistance from others, or delegate the job to someone who can, the entire organization or the group working on the project can go off track, stall or completely fail at that point.
Sometimes a person’s goal is to start an org that supposedly will help X cause but actually that thing never gets done, the problem never gets resolved or whatever, despite fundraising, despite well wishers and despite a pretty website, despite good media stories and others admiring that org. Sadly sometimes those in positions of power in an org like that sometimes get so full of themselves thinking that what they did was great they don’t realize the mission of the org was never achieved, or that a real need exists that is still not being met.
I don’t know exactly what you are referring to, if it is an Autism org or some other cause or some other problem that needs fixing. These same issues exist with all types of nonprofit organizations, charities, various kinds of groups or clubs, and even some churches.
Regarding me I did get brave in my career and over the years did make many things happen. After I quit working to stay at home to raise and homeschool my children I continue to make things happen through volunteer work with charities and nonprofit organizations.
One more thing, Margaret Mead said this excellent statement: “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” I love that because it underscores that important work can be done by small groups and even a few people not necessarily relying on a huge organization to start the work.
As usual your writing is profound. Thank you for sharing your writing with strangers out in cyberspace like me.
Advocacy and social change organizations and groups need to appear professional in order to attract potential supporters and raise funds. It is compatible with giving practical help to people and to holding people in authority accountable for their actions.
I’ve been involved in organizations which combine informing their members and the general public about their values and actions, with actually making things happen on a real-world level on a regular basis. I didn’t see any mutual ego-massaging in any of them.
I hope that people involved in advocacy/social change organizations read your post. While, no doubt it will be raised in meetings, I hope that it will lead to effective action.
Thanks Amanda. I think I’ll throw away a paper I once wrote about effectiveness of voluntary organisations as your piece is better.
Larry – I too struggle to tidy things up, and have drawers full of unsorted papers. But lifting things is not a problem for me. I visit Coventry from time to time so if you need someone to lift things, get in touch.
christinemm:
Deliberately ambiguous — the person involved hasn’t given me permission to reveal their identity (the reason I rarely talk online about stuff like this I do offline).
Have seen it, though, in all kinds of groups. So specificity wouldn’t be all that meaningful to the message of the post.
Philip:
That’s why I said that information and “looking nice” and all that isn’t bad in and of itself, it’s just often all (or nearly all) there is to an organization. When it’s all there is, that’s when the problems start.
I should have also possibly mentioned that sometimes a few individuals within organizations do a lot of work.
And sometimes something else happens that I’ve seen a lot of: An organization will earn a reputation. And then instead of continuing to earn it, it will coast forward on its previous reputation. And then it will defend its reputation, not by actions that prove it’s accurate, but by being nasty to anyone who mentions any flaws, or even anything they just don’t see happening.
I’ve seen a lot higher concentration of this problem since moving to Vermont, but I’ve seen it other places my whole life.
I was thinking about organizations and their mission statements and about which organizations I have seen succeed. Coat drives each winter have a pretty specific purpose that fills one narrow type of need as do soup kitchens and food pantries. Still there are problems if say someone needs food but can’t get to the food pantry or lacks organizational skills and can’t remember which day the food pantry has food to give out. I think one of the more recent organizations I have seen set-up with good results is a housing unit for homeless teens that addresses any need the teen with which the teen comes in. Another is a home for young mothers that also addresses infant care and education. Perhaps part of the frustration comes in not having an organization in your area that is broad enough in scope to meet the needs of the person you are trying to help or is too rigid in purpose. I have for sure seen people defend an organization’s reputation rigorously and ignore obvious flaws…That usually has a bad outcome over time but people fall through the cracks in the process.
Larry, daily Glucosamine and Chondroiton have greatly reduced my daily joint and back pain. Perhaps they would help yours as well. As for paper…there seems no end to it all…I think my epitaph will surely read, and quite accurately, “Buried in paper”….
It’s worse than having too narrow or broad a scope — it’s more like there’s no actual scope at all, just words on a page giving lip-service to an idea, while actually being people who, if you asked them even to intervene in a conflict on behalf of someone, would probably (because they are really confused people) instead lecture the person on how they just have to understand that what their opponents were doing to them wasn’t about discrimination and was really the right thing after all. And then try to find some midpoint between discrimination and actual justice to pursue (because they think eliminating conflict is the same as eliminating the cause of the conflict), all the while spouting slogans about ‘social justice’. Very tangled.
Well, goodness. I came here as one last-ditch attempt to procrastinate on making a phone call (I hate making phone calls, they’re extremely stressful on me unless they’re following a specific formula, like calling my kids’ pediatrician about something), and the phone call is about letting someone know that I’ve been selected to assist her in the capacity of an organization that she and I belong to, which exists for mutual support of people in a particular situation.
I think the Universe is conspiring to motivate me to make that phone call, darn it! :)
(Thank you in any case.)
Well, I have given money to Valour-IT, a subset of Soldiers’ Angels which buys laptops with speech-to-text software for soldiers who had their hands so messed up by their wounds that they can’t type. Sort of the inverse of your communication problem. They are non-silly, and actually spend the money on practical help, I believe. They sent me a nice challenge coin after I sent them some money. It is an excellent stim toy, and I keep it in the watch pocket of my jeans.
Fair enough. Thanks for posting, I won’t worry so much anymore. Usually when you’d be gone from your blog for a long time, it meant you were sick or something like that. I didn’t think of these reasons you’ve mentioned…..now we know.
One of my Gp’s is exceedingly annoying, whatever I have got he has got worse, he doesn’t give a damn about my joints and when I showed him the latest bane of existence, eczema or whatever it is he rolled up his trouser leg and showed me his :(
Kurt Vonnegut used the word “granfalloon” for “proud but meaningless associations of human beings”.
Some people are very proud of their granfalloons indeed, and spend a great deal of effort defending them — whether those be organizations, or nations and ethnicities, or religious groups.
And the thing about a granfalloon is that it doesn’t have to do anything useful! Insofar as it as a purpose, that purpose is just to make its members feel good for belonging to it.
(I wonder if he invented the word “granfalloon” by combining “grand”, “fallacy”, and “balloon”: something proud, foolish, and inflated with its own self-importance.)
Urgh, way too familiar with the “organizations that look good on paper but do nothing” phenomenon. I know we told you about what happened in one that we tried to get started, and… based on what we heard from other people, outsiders’ perceptions of that group versus the reality were so different as to be almost surreal. We still get people writing to us asking to join it, because the website apparently convincingly gives the impression that it actually gets things done. To us, that just sort of… proves how easy it is, with the right kind of language, to make it look like your organization gets things done while actually doing nothing at all.
Honestly, I think there are a lot of organizations that manage to coast along and keep a decently high profile while doing minimal work, because people feel good about themselves when they donate to or join them. I guess that’s kind of a cynical way to phrase it, so elaborating: I think it’s very common for people to look around them at all the problems that exist in the world, and despair because they don’t know what they can do about them, and/or the only people who are in a place to do anything about them have huge amounts of money and power, far beyond what most people can ever hope to have. Many organizations and charities give the impression that if you join them or give them money, you’re helping to be part of the solution (a lot of them phrase it explicitly in those terms) and gaining power to make actual change through that organization, implying that it has or can potentially have the credibility, money or power to do things about issues that many people are concerned about. It helps people feel like they aren’t helpless, like they aren’t at the whim of powerful politicians and corporations, that there is hope after all.
And there’s nothing wrong with that in itself– with wanting to grasp at what seems to be a light because you’re desperate to find *some* way to make a difference in a world that seems unbearably unfair. And there are some organizations and charities that really do stick to the promise of doing what they do, and succeed at it, to greater or lesser degrees, but there are way too many that are just good at giving people the illusion of having power and the chance to make a difference– there’s little connection between the one end where they’re soliciting memberships and donations, and the other where they’re supposed to be taking concrete action but don’t. The best you can say for some of them is that they give people a chance to make connections with others who are like-minded.
Another big problem we noticed was the issue of leaders who thought they could find some perfect “compromise” position in which they could somehow please everyone, and/or leaders who didn’t want to take the chance of acquiring a bad reputation, anywhere. The “let’s keep everybody happy” leaders tend to either end up making statements that are so vague, ambiguous or wishy-washy as to mean nothing at all, or seeking ways to please their “enemies” and making statements that will keep them at arm’s length (while selling out huge parts of the community they’re supposed to be helping, but hey, as long as you’re never a controversial figure with the powerful people and none of them dislike you, that’s the only thing that matters, right?).
Another way that leaders like that operate is to kind of make themselves a background figure while gathering a bunch of “minions” around themselves, and inciting them to be the ones who do the “dirty work” which could make them unpopular in some communities. An example of this we’ve seen is people who constantly make emails or blog posts telling people to “write to X politician about this issue,” while never actually writing anything themselves.
Some people seem to have this idea that it is possible to challenge existing power structures without powerful people getting very angry that you’re trying to take away some of that power from them, or at least distribute it around more evenly, and attempt to force you back into your “proper place,” and I just… don’t think that can ever happen. Generally, in our experience, it also tends to be the more privileged members of a community who do this, those who can almost “pass for normal” (whatever the “norm” is considered to be, for the given thing) and whose lives and safety aren’t threatened too directly by the attitudes and structures they want to challenge. We definitely see this in the autistic community, a lot of it. Not to say that every single person who’s in that position is going to believe it’s possible to bring about change while keeping everyone happy, but almost everyone who holds that view could be described that way.
And it does make it damn near impossible, in some communities, to find any place where there’s real self-advocacy going on.
…and ack, my last comment here seems to have gotten stuck in the spam filter.
I’ve seen a whole lot of that.
I think that — as well as what at first glance looks like its inverse (not sure I can describe it, but it at first glance looks like the polar opposite of the “please everyone” thing) — comes from mixing up… something social and something political, hard to figure out how to describe it.
It’s the reason a lot of self-advocacy groups that are effective, will have a separate social group. Because the moment that being liked by your friends, and agreeing with them political, become equated, you’ll get people who sacrifice the political in order to keep their friends, and people who deliberately try to piss off everyone in sight for its own sake because they think that’s what being political or radical means (and seriously believe that they must be in the wrong ethically if they’re nice to people, or if people, and/or just whoever they deem powerful, like them socially).
So both of those things seem like two sides of the same messed-up coin to me, but apparently create a lot of fervent opposition to each other between people who sacrifice all politics to keep their social ties, and people who sacrifice all social ties for politics. I’ve weirdly enough seen both me and laurentius mistaken for both (and I think both are massive versions of the same essential error).
“if you asked them even to intervene in a conflict on behalf of someone, would probably (because they are really confused people) instead lecture the person on how they just have to understand that what their opponents were doing to them wasn’t about discrimination and was really the right thing after all.”
Yes, I’ve come across that a lot. Another variation is that when you tell the story of what’s happening and why you want their help, they will agree with everything you say and agree how shocking it all is and say that they will help…but they don’t. For one reason or another, they keep putting it off…fail to follow through… eventually you realise it’s never going to happen, but you’ve wasted heaps of time that could’ve been used to find other sources of help, because you believed them, and months later the problem is still there. I have now realised what is going on is that they think privately you or the person you want to help is wrong, but that it’s important for you to get it off your chest, because you don’t really want practical help, you just want to let off steam.
tinted, it could also be that they honestly think you’ve been wronged, and want to do something about it, but they don’t think they *can* do anything. So they try to find some way to help, but they’re expecting not to find any way they can help, and they don’t look hard enough as a result.
hear that, Amanda. Need time too but don’t get it……we knew from early childhood that that was gonna be the case and figured a way around it……..hence three personalities……three minds……but it sucks when one mind doesn’t get the time it needs to process…….Ivan and The Integral process more than me….life doesn’t give THEM time to give ME time……its not fair……when one mind overloaded all minds slow down…….now not happy…..think of overload…..get very sad…..:(
Another fact is that many people who go in to social services are broken themselves, and are trying to fix others to desperately avoid dealing with their own issues. So they do lots of talking and they feel better, but little help is actually given to those who need it.
Several years ago I looked out a window and observed a trail of bloody footsteps heading down the sidewalk. I called the police as I ran out the door and found a man whose feet were peeling off bits and pieces. He probably had scores of caseworkers who felt really bad when his body was found several days later in an abandoned building.