Star Ford

Essays on lots of things since 1989.

Balloons drifting over a hill

An ideology is not just any collection of ideas; it’s a meme or packaged collection of ideas that more than one person subscribes to as a unit; furthermore, the adherents coalesce due to their power relationships, not due to independently coming to similar conclusions. I’ll get back to this.

I’m in a Partners in Policymaking class, testing my patience and compassion, and I’m also alternately reading lectures of Foucault. The overlap between the P in P lectures and those of Foucault is notable: postulating categories of disability, assigning words to them, the shifting fashions of language-creating-thought-creating-character, yet always unconscious of power-creating-language.


Speaker Kathie Snow has a deconstructionist (her word) message, the social model, the anti-labeling “words matter” message, the making disability irrelevant message. Listening to the expansive forewarnings of her show (“She’s going to blow your mind” – over and over) brought into focus the unity with which the non-disabled disability community thinks about itself. I’m already aware that allistic people do that as a rule – create an ideology that is grounded only by historical accident, and cling to it – but was less aware of the exact bounds of that ideology. Kathie has a gift of putting that into tactile relief: the vocabulary and belief system – we could call it “1970” to indicate the decade when the belief started shifting into entrenched – is the one that says we’re broken but we should be fixed instead of institutionalized. Now she makes a new one, let’s call it “1990”, and I’m seeing these as balloons drifting by a decades-slow breeze over a hill. 1970 is obsolete, 1990 is in. The new one says we’re OK, we’re people first, the attitudes matter more than the disability, etc. – no need to repeat all of its pillars here.

What really caught my attention about this lecture was all the forewarnings about minds being blown, and even reports of people saying they were still struggling with her message a year after hearing one of her speeches. When I listened to the points made, they all seemed reasonable and clearly she had even listened to disabled people and gone through a lot of personal growth to get to that point. But it was not clear at first where the depth or challenge was that they were reacting to. I concluded that the challenge consisted of hopping from one balloon to the next, and that can be hard for people who were deeply adhered to 1970 to deconstruct and learn the new way. It still remains a bit unclear whether the hop really moves a person out of the box, or whether it just reconstructs them in another box. 1990 is supposedly more advanced than the 1970 ideology. I hedge because there are always hidden losses in cultural hops, though I accept it is an improvement overall.

It also occurs to me that Parters in Policymaking is at root a vehicle for ideological influence. I noticed the application materials asked questions ascertaining the ideological position of the applicant, which suggests that one way to look at what they are doing is to encourage people to hop forward one balloon. And it is an expensive long-term battle of words to make it happen; those profiting from the old way will fight change to the end. The role of P in P was further underscored by my experience being selected from among all the participants to be escorted to the director’s office (the director of the managing agency) to be ‘splained to about the ideological basis, with all the warnings and expectations (as if saying “thou shalt have thy mind blown”). While I suspect the program is helpful to the disability rights movement, it was weird that they sensed I might not be compliant or might need the extra ‘splainin.

I wonder if society is condemned to an endless series of ideological balloons like the karmic cycle of rebirth into the same old world, or if there is an escape to truth. Let’s investigate that by popping the 1990 balloon, starting with language. Specifically with “person with disability”, the “new” term. Did anyone decide what a disability is? Is it a thing like a fork? Why do 20% of people have it and 80% don’t? Who decided where to draw the line? Obviously these questions have no answers; ideology is faith, and doesn’t depend on the measurable world. I feel this term is equally non-descriptive as the terms it replaced. The 1990 balloon has an overly neat (false) parallelism across disabilities; the vocabulary chart outlining what to call “those people” exposes that the moral judgment that still exists. The difference is possibly only that in 1970 the whole person is broken (demented, a cripple, retard, etc), while in 1990 the person is divided into a healthy part and a broken part, so we’re now “with” bad things (with dementia, etc). My hedging about this being any real advancement has to do with the new vocabulary of being broken into two things, a person and a disability. Why do we have to be seen as broken at all?

Any ideology implies othering. The power dynamics that create an ideology also create group membership; once you’re in a group (hanging on a balloon), it becomes possible to think about “those people” – others not in the same group. So I wonder if it is even possible to fight for and emplace a new ideology that doesn’t create a “those people”. The concept of civil rights extending to a disabled class is perhaps activated when you first change from the attitude that we are non-people to the attitude that we are people “with” some terrible baggage – that is, going from “disability first” to “people first”. What’s the next way of thinking about us after that? I’d like it to go from “people first” to “people, period” because my thought about where disability fits in the sequence is that it should neither be first nor second. But the comeback is “without labels, what should we call those people, then?” and I say “which people?” and they circularly respond, “the people that the labels identify”. Sigh.

I’d also like to be able to see the 2010 balloon in clear focus, but it is not that clear to me yet. As much as I hope it will approximate truth, but I actually think it will just twist another way to serve another interest. I think it has identity politics in it and that the conflict between this ideology and the prior one creates the conflict between “those people” and the those-people wannabes, and the twisted social logic that everyone will want to get in on the benefits of being oppressed, watering down “real” disability. Before you cringe at what I just said, remember I’m just tossing out the kind of arguments that are happening over the clash of ideologies and how those conversations defy logic. Human variation continues to exist in the measurable world fairly consistently; the way it is re-seen through ideology is what changes.

For most people I think the balloons are as clear as they are in the picture above, but for me and other autists, it takes study to find them. Until recently I didn’t really understand “people first” from the perspective that it is a reaction to “people second”; the two options just looked like equally strange restrictions of thinking. Not being able to notice or follow these things is itself a disability or a disadvantage when working with ideologically based groups. I seem to irritate them a lot.

There’s a lot that the culture warriors do not get, that we get. At least the autistic people seem to get, because we’re not there participating in culture as much in that way and have a view from afar. We get that disability is not medical (it being owned by the medical system doesn’t change what it is). We get that the old and new terms equally define you by your disability when you use those words with that meaning. (Try this: redefine “book” to mean apple, then parse this: I’m going to eat a book for lunch. Exactly zero semantic shift occurred. Get it?) We get that “disability” (whatever that is) should be relevant, not irrelevant, because it is part of identity; there are real permanent differences fueling discrimination; it is not erasable. We get being actively disabled by systems (therefore you can say “disabled” if that’s what you mean). All this built-in understanding doesn’t get us a place in the conversation though. For me, I’m scarred from trying to engage.

But they were never my enemies and I am not a fighter. Seeing the culture war as a balloons drifting in the distance is actually a compassion technique. The culture warriors drawing all the attention to the drifting things are not in swinging distance of me; I can see more clearly from a distance where I don’t have to be protective. Those who were in 1970 may be having a tumultuous time in that box seeing their allies jump and shatter alliances – the mind blowing experience? I’m just sitting here observing the hill from my particular angle. I’m neither better nor worse; I’m just not in that battle. What feels important to me as a person who cannot participate in battles of ideology is that I have compassion for other people’s growth as they battle it out. They often mistake my words as representing an opposing ideology; from where they are, they may not be able to hear what I’m trying to actually say. I will continue to speak the truth that I can; I will no doubt continue to irritate them.

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