anbuend wrote:
I'd be very wary of taking money for advocacy work. I've seen that make people ineffective advocates before. For instance, I knew a self-advocate once who as part of his employment at an agency that regularly screwed over disabled people, was supposed to keep watch over a particular self-advocacy group and make sure that the nondisabled facilitator wasn't exerting the wrong kind of control over the disabled people.
I think this is the paradox of advocacy. As soon as any activity becomes about protecting vested interests the intent is corrupted. For me to devote large amounts of time to advocacy of any type means I can't do it for free. I have to find ways to deal with these conflicting interests without compromising the primary intent or settle for advocating from the margins on a volunteer basis.
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There were a couple of problems with this. One, I don't think it was a coincidence that they picked someone who was blind to do that job. The facilitator's unethical control stuff was all happening over purely visual channels, so he literally could not see what she was doing to people -- the looks and gestures that told them to shut up when they had a real issue to discuss, other things like that. Two, when I brought all this up to him in private, he started getting really twitchy. He told me he really didn't want to hear any of this. Eventually he said "Look, I really like my job, and that facilitator is my boss, so can you just not talk about this with me anymore?"
This is definitely not how I would handle it. I would likely have gotten fired from that position because I would make waves and piss people off.
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He was also in general an extremely passive person, and was easily walked all over even when he did see what was going on. Many professional self-advocates are chosen to be passive mouthpieces of the opinions of the nondisabled professionals, or chosen to have very mainstream attitudes towards disability (so that they will always make the same decisions the professionals would make anyway). And accepting money only complicates things even more, making people feel beholden to whoever the money is coming from.
Again, not me. I am not a passive person when I've got my dander up. That should be evident from the way I post here. I have a low tolerance for the sort of crap that people like to engage in when protecting their turf. This is both a blessing and a curse. I tend to irritate people when I shouldn't, but I can be very direct and cut straight to the heart of a matter. This trait has not served me well in a corporate environment.
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In order to do real advocacy work you have to have a strong sense of integrity and ethics, otherwise people will walk all over you even if they are praising your "wonderful little advocacy skills" as they are doing it. You have to have the capacity to stand up to people in tough situations. You have to be able to remember not to believe everything you hear from people with a vested interest in hiding things.
Here I see my Theory of Mind deficits as an asset. When on my guard, words mean far less than actions and results. I can't determine a persons true intent from their words and demeanor, so I must rely on the evidence of what is actually happening.
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You have to know what to look for in many situations -- for instance, self-advocates who work to close institutions have to either have extensive experiences in the type of institution in question, and/or be trained to spot the little things when they go in, and not to be swayed by, say, good decor or extensive activities/beautiful grounds/swimming pools and other "luxury" things, and to remember that on tours they're generally shown the best parts of the place only. They have to be aware of the subtle methods of control that can exist in the "best" institutions, and the lack of freedom that still exists there, rather than being wowed by "innovative" ideas in how to run institutions, or by "improvements" that don't address the fundamental power structure of institutions. Otherwise they will simply uphold the status quo, and when disabled people put their stamp of approval on something it's much harder to show it's a bad thing.
I have no answer to this other than learning from experience. Conversations such as this one are the first step. Listening to those needing the advocacy is critical.
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That's another thing about being an advocate -- people will always be looking for you to approve things because it makes them look good to say that a disabled person likes it. I almost always say no to such opportunities even when I think I would approve of them, because I know it's essentially a marketing tactic and I don't want to be used in that manner.
I hate marketing. I hate how it is used to paint pictures that range from idealized to utterly false.
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I might try to come up with a list and post it later, but don't hold your breath. I'm in a noisy, echoey, bright (fricking enormous plate glass windows everywhere across the entire front of the building) hospital lobby after doing yet another sleep study (finally found the right ventilation settings to handle both obstructive and central sleep apnea, yay), and my brain isn't the best it's ever been. (Although it may be the best it's ever been after waking up in the morning given that I could actually breathe all night.)
No worries. A list is secondary. The conversation is more important right now. I need to hear people's stories.
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Oh also beware of associating yourself with organizations by/for professionals and parents, in the capacity of self-advocate. Much like the "stamp of approval on a particular service" thing, this is a situation where 9 times out of 10 (whether it's always intended or not) you're being used as a way of showing that the organization has "progressive values" by having "actual disabled people" in mostly-token roles on it.
I refuse to be the token disabled guy. I suppose it could happen if I am incautious, but nothing raises my ire faster than an attempt to place me in such a box.
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There are situations where it's good to go in and change things, but without being very well-armored mentally and knowing exactly what you're doing, it's easy to just end up being used as a symbol and a marketing tactic rather than making true change for the people "served" by the organization.
It's not necessarily bad to work alongside an organization for specific activities though. That's what I usually do, since I'm unwilling to join even most self-advocacy organizations. (Way, way too much drama in my life without all that. Although for what it's worth, I've found far less drama in developmental disability self-advocacy than in autism self-advocacy. The main problem in DD self-advocacy is that nondisabled facilitators often control the whole thing. But when they don't, it's quite worthwhile. In the DD community we're a lot more mature as a community than the autistic community and it often shows. Seriously. Just the amount of less drama involved is staggering.) It can mean occasionally pairing with people who don't believe the same things you do, in order to work towards a common goal. For instance I have worked with really patronizing parents and professionals before in order to lobby for adult services: the goal was more important than who I was working towards that goal with.
But in general there's a lot to be careful of lest you just end up being used by someone to accomplish their own goals and ends that have nothing to do with the welfare of disabled people. It's not something you want to always just jump into without preparation and understanding of power dynamics around disability. Of course if you don't get used like that, you can learn along the way. I've just seen so, so many people who think they're making a huge difference in the world who are really just tokens and mouthpieces for other people. And when you're openly a self-advocate, people will be looking for people like you to do that with all the time.
Your cautionary observations are duly noted. These are the things I want to hear. I want to know what those being served think and need.
_________________
When God made me He didn't use a mold. I'm FREEHAND baby!
The road to my hell is paved with your good intentions.
22 Feb 2011, 10:42 am
