(I don’t have the time or energy to get into a discussion of what “treating adults like children” says about how people treat children. Please don’t assume I haven’t thought of that. And, as usual, this applies to far more than the autistic community.)
Last night the discussion group on Second Life veered into the topic of non-autistic allies and their involvement in autistic advocacy efforts. A few of us talked about the fact that often what happens, is instead of assisting autistic people to run our own organizations, our “allies” decide somewhere along the line that they make better decisions than we do, have better social sense than we do, etc. And start making the decisions for us and very much disliking it if an autistic person starts questioning their sudden presumed authority.
I am guessing this would be in the same category as Phil Schwarz’s pseudo-allies. A quote from that:
There are at least three varieties of pseudo-ally and pseudo-ally behavior:
- The Missionary — gets points for helping us, but the problem is that they are often helping us their way. They get points; we get used.
- The Vulture — exploits us, often making money off our needs, our work, or our lack of power. When a Vulture makes money off our work, it is often more money than we make off of it. The Vulture started multiplying at an incredibly fast rate after the passage of the Americans with Disabilities Act.
- The Do-gooder — motivated by a conscious desire to help the less fortunate and a subconscious desire that is patronizing and condescending.
How does one tell a true ally from a pseudo-ally? Sometimes the language they use is a dead giveaway:
- “Courage”, “inspirational”, effusive, excessive, unrealistic praise
- “These people,”; “us” and “them” rather than “we”
Some true allies started out as pseudo-allies — but listened and learned and grew and re-examined their own motives and assumptions.
True allies understand the distinction, and the problem.
But one thing it suddenly made me think of, is another aspect of the dynamics at work here: Many autistic people are totally accustomed to having people take over, being told that our decisions aren’t as good as other people’s, and so forth.
I’ve made a study of power dynamics for a long time. I’m not ignorant about the things that can happen between staff and their clients in the developmental disability service system, for instance. I’ve done a lot of observation and reading, and am fairly good at spotting patronizing or controlling behavior.
But even with all that background, I still miss it when it happens to me. A lot. I don’t understand until later, or I don’t understand until I see the contrast between how I am treated and how others are treated.
One time, as an adult, I went to a meeting. It didn’t go well. After the meeting was over, I attempted to approach the person who ran the meeting. That didn’t go well either. I restrained myself from doing anything particularly violent (although I was later written up for violence — long story, another day) and walked out of the room. I later found out that I was written up as going AWOL.
Understand: I am an adult. I am not institutionalized. I am not in prison. I am not in the military. I do not know a whole lot of other kinds of adults who can get written up as AWOL for storming out of a meeting in the middle, let alone at the end. This went on my permanent record.
Understand also: I am so used to being treated like this that it often barely registers.
When people tell me they’ll go to the store and buy something, then buy something different without my authorization, and pretend it’s the same thing. When people buy me little “treats” with my own money and expect me to be excited when I see them. I don’t notice this.
I can’t put my finger on the difference between how my staff (who I consider reasonably good staff) treat me, and the way Laura’s staff treat her. I see her staff interacting with her quite often, and I see my staff interacting with me. There’s an intangible difference. While she has plenty of her own staffing problems, her staff in general are less paternalistic, less patronizing, less apt to assume she’s incapable of decision-making, less apt to make decisions without even consulting her.
And there’s an air of respect to them. They don’t get in as close as my staff get to me. I don’t know how to describe that, I view it in terms of spatial relations. My staff try to get in further, they are more invasive, they have less sense of boundaries. Her staff treat her the way one adult treats another adult. We get roughly the same services for roughly the same reasons, but the difference is phenomenal.
The difference between us is that, while we are, both of us, cognitively and physically disabled (we’re both autistic wheelchair users with an assortment of health problems — different reasons for wheelchairs, often different health problems, but same general categories sociologically), I get services for cognitively disabled people and she gets services for physically disabled people.
But to get back to my main point, many autistic people are used to being paternalistically controlled. Those of us who question things the least receive the most praise in organizations run mostly by pseudo-allies. Those of us who insist on being treated as adults are likely to be seen as hostile. Because treating us like children comes so naturally, and we have so much come to accept it, that our trying to breach that is interpreted much the way many adults interpret children: As a childish tantrum rather than a legitimate assertion of our equality with the understanding that autistics need to always be in genuine positions of power in legitimate autism organizations.
A note there: Positions of power doesn’t mean finding the most submissive, status-quo-upholding auties you can come up with and putting them in tokenistic pseudo-power roles while grinding more assertive auties into the dirt. I have even seen situations where one autie or another is “the good autie”, and everything becomes “Why can’t you bad auties be like the good autie?” or even “Can’t you see you bad auties are hurting the good autie? Aren’t you ashamed of yourselves?”
The role of allies is to assist and support, not to take over and control and paternalize with occasional benedictions from “good auties”. And auties ourselves need to figure out how to notice when this controlling behavior is taking place, because so many of us (me included) are so accustomed to it that it’s all but invisible to us.
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I think I fall foul of the ‘do gooder/ missionary’ type. I’d like to excuse it under the guise of being a parent, where my children are still young. However, it isn’t a valid excuse and means that I need to pull my socks up pretty soon. My only ‘doubt/query’ would be using the collective term ‘we.’ I can see why you feel that would be better, but at the same time ‘we’ implies a shared experience, which I don’t think many parents can achieve. Empathy maybe [hopefully] but ‘we’ sounds a bit too chummy. Best wishes as always in helping me see the way ahead.
I agree about the “we” stuff mcewen - it sounds to me kind of presumptuous but really that might be an effect of the bullying I had experienced when I was younger. “I” was not part of the “we” and was reminded of that often so now I feel insecure or inadequate to use the term.
I also did the good little mental patient thing before - not something I am proud of course. It is easy to do though because there is so much pressure to and especially when you don’t have any confidence in your abilities. And of course you are praised for being so “good” - it is almost laughable after you figure out the game though. Once you question the therapy or try and offer your own suggestions than you find out what they really thought of your “effort” all along.
I try to access my motives, my intentions, my thoughts in “advocacy” and in writing about autism and Charlie—always lots to learn.
Wow, perfect timing. No time to explain right now, but thank you (and I’ll try to write it down tonight).
I am not autistic but the *external* stuff effects me too. And everyone else. And it matters to me because I care about it, not because I’m trying to do caring about it to other people. That is why I can say we. It doesn’t have to involve faking someone’s perspective.
Thanks for this:
“Positions of power doesn’t mean finding the most submissive, status-quo-upholding auties you can come up with and putting them in tokenistic pseudo-power roles while grinding more assertive auties into the dirt.”
Now - how to bring this to the attention of the Canadian Senate because as sure as God made little green apples, Autism Canada and the like are highly unlikely to foster the inclusion of the people who really should be part of the agenda in Canada - like Michelle Dawson and jypsy if she feels up to it.
Amanda I read the article you wrote for THE COMMUNICATOR. I liked your article alot. And you are write about do gooderism. And I liked what you said about Fey. I liked having Fey near me when I visted you. I slept in your bed for a nap and Fey was right there. Right now, Quiero is sitting on my shoulders. I love wearing my live fur coat. I love kissing Quiero on the head. I will go to the AUTCOM conference next year because it is in Canada.
If your staffing issue bothers you badly, could you write a letter to the person in charge of setting you up with staff in the first place………or would the staff themselves be up to a little “examination” of their actions toward you? You describe the situation brilliantly here………I for one know that if I were part of someone’s staff and I heard/read that kind of description……..I would certainly think about how my actions were affecting/being interpreted by……..whomever I was serving……..(I chose this word over assisting because it doesn’t automatically imply that someone cannot do for him or herself at all……….see I am learning something already….)
Ivan
The personal space thing is interesting. I certainly would pick up a three-year old (well, a three year old I knew), but wouldn’t consider picking up an adult - and I’m physically capable of picking up a lot of adults. There’s a very strong spatial thing there.
I suspect that I often shade into the ‘doo-gooder’ false ally. I just hope that either I notice, or someone else calls me on it before I get really patronising/up my own arse.
I’ve not had the staff issues but have seen staff issues a lot and it’s like you say…albeit, I’ve thought of it as them being basing everything on “appearaance”. If they get used to someone not talking, or being physical back, they get more comfortable closing in on that person’s space. Maybe it would help staff if they were trained in their mind to think of every autistic as being able to speak and speaking whenever personal space is encroached on. Aren’t they “superior” at imaginary play? (or is it only advantageous imaginary play they perceive being good at?) Anyhow, this reminds me a lot of that Sue Rubin documentary as I mentioned yesterday and your reply was exactly how I felt…that her staff often seemed impatient and demeaning. She was so “nice” to them and seemed a bit ashamed…it made me sad. It’s odd to feel sad but then realize I’m sad for reasons other than why others feel sad. Perhaps it is the same. It isn’t pity though as much as it is I wish she’d assert once in a while so I could feel a bit more hope for us. That’s one thing others often feel a lot of before I do. Hope. I’m working on it…
your blog is very interesting to me because it changes my perception about other people. When i read your posts & look at your videos it’s like a window into someone elses world.
It’s very easy to have preconcived(?)notions about people & I think when there is a communication problem it is even easier to go with those preconcived notions. For instance, what other people lead you to believe & what your own mind leads you to believe.
Posts like yours ARE changing how autistic people are perceived by the ‘rest’ of us.
Can you make your blog required reading for your staff? I suspect that would alter their perspective (possibly even shift their paradigms, if you can pardon the cliche).
We’ve run across a ton of people, unfortunately, who fell hook, line and sinker for the overly effusive praise (oh, you’re so brave, such a great survivor, etc, etc). I think part of this goes back to something you’ve mentioned before a few times, about how some people think being told they’re a survivor is a personal compliment, because it implies that their survival was due to some personal merit or virtue of theirs rather than luck and social advantages, which it more often is. (And of course, those who survived did because they were smarter, stronger, etc, than those who didn’t survive.) And, unfortunately, there are *way* too many people in the plural community who are stuck on the “we were better than those who didn’t survive” mentality; less so than, say, ten years ago, but it still exists. In fact, some people take it as a personal insult when you imply that their survival might not have been due to their personal superiority, in so many nicer words.
Of course, the whole goal of a lot of doctors involved in the recovery movement was to get the patients to accept paternalistic condescending treatment, which often seemed to be combined with a covert or overt attitude of ‘putting women back in their place’ (since a majority of the patients were female)– i.e. treating them like children and letting a man (or a male-like authority, anyway) make all the decisions for them, since they’re just hysterical anyway and can’t think rationally.
On not being able to recognize when you’re being treated like less than an intelligent adult with the same rights as everyone else, we’ve had some problems with that. There were times when we could have complained about certain doctors’ treatment of us, but we actually didn’t even realize at the time that we had the right to report certain things, that we had any recourse at all.
I think part of it is also that a little can look like a lot when you’ve never had *any* before, and a lot of the time, people end up believing they’re being respected when what they’re actually getting is paternalistic condescencion. A lot of mental health professionals are very good at doing that. (We’re currently trying to work on a list of Dirty Tricks Used To Make You Think You’re Being Cared About And Helped.) The one example I’m thinking of– well, most people around us, when we were younger, had the attitude that our “problems” must never be discussed in front of us or where we could hear. When we began running into mental health professionals who would tell us flat-out what they thought was wrong with us, we mistakenly believed that this meant we were being respected; we construed their willingness to “let us in on the secrets about ourselves” as a form of respect.
One of the more disturbing permutations we’ve seen of pseudo-allies is the ones who are actually after sex, who approach with the “you’re so brave” or “you’re so fascinating/amazing” praise and then try to turn it into an appearance of loving you. I mean, we’ve had our innings with sexual predators, but none of them deliberately approached us knowing that we were a system, buttering us up in that way (one of them just thought he could take advantage when we *did* tell him). We’ve seen it happen a lot in the plural community, although I’m sure they hover around any group they consider to be too incapacitated or childlike to refuse them or make an informed decision whether or not to have a sexual relationship. (”Come here little one, let me show you how much I love you”– BLECH.)
There’s another category that we certainly keep in our mental checklist when trying to figure out whether someone is a real ally, but I’m not sure if this would fall into anyone else’s definition of a pseudo-ally. This would be people who are perfectly all right with allowing us to be autistic and not curing us, and advocating for us on that count, but who can’t stand to see or are disgusted by something *else* that we are, and have ideas about what kinds of lives are worth living and which aren’t, or about what’s a ‘disorder’ and what isn’t, or about what kinds of beliefs and self-identities are okay, that, put into practice, can get us locked up or subjected to therapeutic brainwashing pretty readily. Around such people, we’re never sure what to say or how to respond– “Thank you for protecting my rights as an autistic person, but I’m not sure I’m comfortable around you knowing that you think it would be a good idea to drug or psychotherapize away some *other* part of my life/identity which is also essential to the degree that I would consider removing it to be killing me and replacing me with someone else”?
Coming from the perspective of a “staff” I dont hold much hope for them changing their minds. If communicating with Amanda live doesnt change their minds I doubt if anything else will. Some people are just so brainwashed into believing that if a person who cant speak then they cant think. Of course it could also be the power deal - too threatening to think that this person (Amanda)just may have more capabilities in certain areas than thry (staff) hsve.
In terms of staff relating to clients.Since reading this blog on a regular basis I go to “work” with the mindset of “If this person had access to and was allowed to write- would I be ashamed of him/her writing about their experiences and detailing what I have done that day?” So much of what you Amanda have written could easily be written by some people I relate to on a regular basis. I know that you have made a huge difference in my life and how I see people. I catch myself so often thinking “uh oh I’m being NICE” or “eyeballs EYEBALLS” or ” being unresponsive is not the same thing as ‘no one in there’ ” I would love to read some of your blogs to certain people but at this point I cant take the risk.
Also something to think about = there are agencies who will deliberately block staff who believe that someone is capable from working with “low functioning” people. The last thing they want is for one of their staff to become an advocate for their client. Sounds like thats whats happening to Amanda. Let’s keep her in her place and the easiest way to do that is to send staff who will sabotage everything she wants to do. If we send staff who will encourage her and push her to be the best she wants to be -oh my we will have to change our attitude ! Not only that but then others will follow her example and we wont be in charge anymore.
a recovering psuedo-ally -
NLN & berke^amorpha, What do you mean by the term plural community?
I don’t have a mental disability, I don’t have to deal with social services, and I’ve never had staff, so I’ve managed to avoid the vulture, but I’ve seen the other types. Even complete strangers feel justified in attempting to “help” me like this. Is it all assistive devices that attract them, or just mobility aids?
One thing I noticed was that I had a definite sense of this behavior as a child long before I could put a name on why it bothered me. Particularly the Do-Gooders, who seem drawn to children. At six and seven, my vocabularly didn’t quite run to words like paternalistic, but I had this definite sense of weird, creepy people who acted like they were entitled to control everything about me because they were being “helpful”. Since I couldn’t explain it rationally, most adults tended to side with the Do-Gooders (however I was fortunate to have exceptional parents), and my choices around those people frequently came down to letting people act in a way that seemed weird, bad, and wrong (not abusive, just no way to treat people), or complain and get treated like I was throwing a sensless tantrums.
Fortunately, people are less likely to treat physically disabled adults like that, and other people are less likely to dismiss a person’s ideas based on a physical disability. Because I think the main difference isn’t being able to express the objection, but having other people support your right to be treated with respect. I got the benefit of being considered increasingly worthy of respect by society as I grew up. Had I instead faced continual reinforcement of the Do-Gooder’s right to manipulate me and dominate my life, I’m sure I’d have considerable difficulty noticing it or remembering that there was anything wrong with that. Which is the problem in the post. It’s hard to keep noticing something that’s continuous.
The “good” vs. “bad” reminds me of a time I was almost molested — the perp tried it on my friend, without my realizing what was going on, then tried it on me saying I was “good” and she wasn’t.
Brrrrrr.
That thing about “good” auties and “bad” auties is hitting that memory. Hard. And I guess anyone pulling that particular crap from now on is automatically suspect in my eyes.
AB: I just read your presentation that KathyGrant mentioned, and it relates to this post, becos of the do-gooders part, among others.
Uf, at the moment of doing final course grades, this is making me think some (as much as my math-scattered brain can manage but more than I want to) about power relationships in my classroom.
I have my own issues about all this that I have vented elsewhere about all this adulation about the latest crop of autexploitation, by the Grinkers and Nadesans of the world. I see there works as ultimately paternalistic and patronising, doing the explaining for us, taking up the “airspace” that should be ours and as always doing the talking for us. Why no-one else seems to see it my why I don’t know?
[...] We’re just getting started. Consumerist movements have been around for a while, but all in all, my sense is that disabilities organizing is at a place of possibility. Mental health communities have been historically problematic to organize, because of the strong potential to get overtaken by “concerned” outsiders. [...]
I gave up a full time unbenefitted job on the theory that MA Rehab would help me find something better. Then I had the flu, a trip to the hospital, uncooperative staff that left me unattended and doubled over with abdominal pain for 3 and a half hours, a vitriolic rant at a nurse who finally came and suggested the pain I experienced was mostly in my head (I threatened to leave and suggested people could sue for such lack of treatment, etc. She was dropping a hint that I was in their custody and had better shut up, otherwise my case might be more psychiatric than physical because I was “out of control”), a lengthy grilling by three other nurses about my sex life and other sh*t, after which I was involuntarily invited to stay as their guest. After I was released (hours rather than days later, thanks to the fact that HMOs are cheap - blessings come from unexpected places), the MA Rehab guy I was working with decided an unpaid internship at Hewlett Packard (where I was actually learning) was not for me, that I wasn’t “ready for work” and that I should be trained as a caterer so I could work for them. Yay! Restaurant minimum wage is less than half the regular minimum wage and do you know ANY caterers who get tips? If this wasn’t a vulture situation, what is? He knew that I had a state “record”, that I would be monitored, and that future employers be “notified” of my “psychiatric condition” for a period of time. Because of my AS, not reading a social cue while doubled over in pain(the nurse’s warning), and not realizing social boundaries (as I was grilled by three psychiatric nurses), got me into deep trouble. Now, the ONLY respect I get is from my fellow Aspies and Autistics. It is to them, now, that I owe my allegiance, my Randallegiance.
[...] Wheelchair Dancer presents What Happened to You and In Your Face: Answering Questions posted at Wheelchair Dancer. The first of these posts covers that age old question people love to ask and the second what it’s like to be in a relationship where one of you is disabled. Ballastexistenz from Ballastexistenz has an interesting discussion on Pseudo-Allies and One Reason Many Auties have Trouble Spotting on them Lorraine Hershon from Keep Buggering On!! (which seriously is the best blog name I’ve seen in a long time) wrote Watch Out!!! which reminds me of why I hate walking across busy carparks when I’m alone in my chair. I’d like to be able to say her entry shows human life at it’s best but well, I can’t. In fact it makes me want to hit the people involved. [...]
[...] Ballastexistenz » Blog Archive » Pseudo-allies and one reason many auties have trouble spotting them. “…instead of assisting autistic people to run our own organizations, our “allies” decide […] that they make better decisions than we do […] and very much disliking it if an autistic person starts questioning their sudden presumed authority.” (tags: Autism Allies Treatment Pseudo-Allies) [...]
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