Daily Archives: November 3, 2006

Being an Unperson

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I gave a presentation a few years back at Easter Seals Central California for staff who worked there. The following video was made from the text of one of my handouts for that presentation. It addresses the extreme dehumanization experienced by people in that system, and that had probably taken place in the lives of almost all the adults served by the agency, including me.

Note that I thought people might have got sick of watching me sit around flicking my hands around, so I did most of it from a different perspective this time. Also note that the things I talk about are far more widely applicable than just the system I was describing to them at the time.

Opening the spirituality can of worms.

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Spirituality and disability is a giant topic, as well as a giant can of worms as far as I’m concerned, and it’s the topic of the next disability blog carnival.

Spirituality — by which I mean a relationship to God, not “talking to spirits” — is central to my life. When I’ve said this before, people have been puzzled because I don’t talk about it often. There are many reasons I don’t talk about it often, some of them spiritual and some of them social. The spiritual reasons involve the fact that spirituality lies outside the realm of symbols, including language, and throwing language at it usually just serves to be confusing.

The social reasons are more to do with people’s reactions to me. Dave Hingsburger said once that it’s considered okay to talk about communing with a tree, but considered somehow self-aggrandizing to talk about communing with the One who made the tree. That’s part of my predicament. The rest has to do with other people’s past reactions to me, some putting me on a pedestal in a way that is decidedly anti-spiritual. Elevating a person because of their relationship with God misses the point about God, and is something I consider so misleading as to be sacrilegious. Other people have reacted by pathologizing my spirituality.

In response I normally live my spirituality, I don’t talk about it. If it’s really necessary for someone to see it, they will. It’s central to my life but it’s a fairly silent center in terms of my discussion of it with the majority of people.

One problem I have encountered, particularly within my religion of Quakerism (which is one of the only places I sit around discussing spirituality with people), has been people who use something that looks like spirituality, in order to maintain false comfort, privilege (whether racial, ability, class, whatever), and other things that it’s really not meant to do. People who believe that when a combination of luck and white middle-class able-bodied privilege allow them to sail through a situation, it’s because God loves them. People whose version of not harming people is not to rock the boat even when it needs to be rocked. People who seem to view spirituality as mainly having a “positive” emotional experience. People whose vision of spirituality seems to be a pastel-colored saccharine shield from reality. (This is an idea popular in the New Age, and there’s some New Age stuff that has percolated into Quakerism because of Quakerism’s particular method of worship.)

Also, many people join my religion less for spiritual reasons and more for its association in some people’s minds with leftist politics. This means that all the ableism of the left (not that there’s none on the right) gets imported — euthanasia, eugenics, etc. Without a second thought. Not to mention classism, racism, etc, which are intertwined with ableism in various ways.

My experience with spirituality has not been a serene, pastel-colored pursuit of emotional satisfaction. It has been an experience of encountering the edges of symbol and perception, and experiencing everything I thought I knew, at the most fundamental level, destroyed over and over again in ways that have left me shaking and incapacitated for weeks on end. It has meant changing in ways I did not think I wanted to change, experiencing a level of terror that goes beyond the fear of death, and years of struggle with the sin that separates me and every other person from reality. Sin is not a list of actions, it’s the aspects of human nature that cause us to run and hide from certain aspects of reality, and defy what we know we need to be doing.

My version of spirituality has had to withstand situations where horrible things were happening to innocent people and there was no ethical way of saying “God didn’t like these people” or “They didn’t pray enough” or “They’re not sufficiently non-violent and ‘correct’ about everything”. It’s had to withstand torture, pain, suffering, and death, and some of the worst aspects of human nature, and it’s had to be something other than passivity. Because of that, it hasn’t been a series of privileged platitudes, it’s delved far deeper into my soul than emotion would, it’s carved out, sometimes painfully, the shape of who I am supposed to be, and what I am supposed to be doing, at any given time. I sometimes screamed for help while being beaten and restrained by staff and was helped on a spiritual level instead of a physical one.

It’s meant that over time there’s been less and less terror in my way, and more and more ability to perceive the fundamental and awe-inspiring love of God.

I say this for information purposes. To attribute any of this to me, cheapens my relationship to God and cheapens my spirituality into some plastic imitation. It also sometimes creates unrealistic expectations of me. Don’t do it. I’m just trying to explain where I’m coming from.

The disability category I belong to — cognitively disabled people in general, autistic people in particular, non-speaking autistic people in more particular, and autistic people who use FC at least some of the time in even more particular — has a spiritual stereotype about it that is misleading and damaging to our real spirituality. That stereotype parallels, and is sometimes used alongside, the stereotype of the noble savage. The reasoning goes that we are “simple” and therefore closer to God because we lack the sin that the rest of humanity has, that we are purer versions of humanity than non-disabled people, and that we are totally innocent.

This deprives everyone it is applied to of our true complexity, our true relationships to God, our true spirituality.

It’s sometimes hard for people to understand that a stereotype that sounds positive can be negative. People say that it’s not prejudiced to say that American Indians, for instance, are uniformly simple, spiritual, close to the land, and have some kind of monolithic culture that accounts for all this. But it is prejudiced, and it is a prejudice that is hated by most Indians, for good reason. It sounds positive but it deprives people of humanity, complexity, reality. It’s a form of dehumanization. It’s just as dehumanizing when applied to cognitively disabled people.

There’s another thing I need to mention now, which is that a lot of people think that the experiences they call psychic are more spiritual and more to do with God than the experiences they call physical. They aren’t. They’re sometimes self-delusion, sometimes a sophisticated form of pattern-matching, and sometimes the perception of things that other people have learned to block perception of. Even the things that fall into that last category, have no more or less to do with God than the keyring sitting in front of me on my desk. The word “spirits” and “spirituality” may sound the same, but they’re not generally the same thing.

There’s a few myths floating around, that entangle all this stuff, that involve all non-speaking (in some cases all FC-using) autistic people being telepathic, and linked to each other in a particular way. Tied closely to that is a dangerous practice of psychics being used to say what we are thinking.

Please understand that this is something I have experienced first-hand, not just heard about somewhere. I have had people claim to know what I was thinking on the basis of their supposed psychicness, and also claim to “know” that I was out of my body, and speak to me as if I was somewhere else in the room. This is about as much violation as you can do to another person.

I have seen this happen to other autistic people, as well: Reiki practitioners driving autistic people into overload and catatonia and saying this was an out-of-body or “advanced spiritual” state. The sister of an autistic man once claimed he talked to her in her dreams, but she never verified this with him elsewhere, and everything he “said” to her sounded like an extension of her own spiritual beliefs. Psychics claiming to know what autistic people who have no word-based communication system are thinking.

Also, and this is one of those things I’m normally quite hesitant to talk about, and I just want to emphasize this has nothing at all to do with my relationship to God or my spirituality, at least nothing more than anything else. I have experienced sending thoughts back and forth without speaking, in ways that were verifiable. There is a “real thing” to this. But when you cannot verify it with the person, you have no business saying that your imaginings or outright hallucinations are anything to do with what the person is thinking. There are so many things, starting with your own thoughts and wishful thinking, that can interfere with that, and so much violation involved in this kind of thing, that it is dangerous to do to someone else.

I do think there is something to the idea that autistic people are perceiving things people think of as paranormal (and I think of as totally normal but currently out of fashion in a small but powerful segment of society, thereby allowing tons of myths to crop up around it). But this is not all autistic people. And it is not necessarily anything to do with spirituality. It’s just to do with the fact that we’re less likely to be able to turn off our ability to notice these things, if we do perceive them. Certainly some of us don’t perceive these things. But a lot more do than seems possible by chance.

However, perceiving something doesn’t mean understanding it. I read a book by an autistic man once who described a giant white and gold glow that filled a room, emanating from a particular woman. He concluded (based on some stereotypes, among other things, about what a light color means) that this meant she was amazingly spiritual. Actually that kind of thing usually means something being seriously misdirected. I and many of my friends avoid people with giant glows (white or otherwise) around them because, among other things, they are exerting more influence over their environments than they should be, and often have some misguided ideas about “energy”. (I was not surprised later on in the book to find out the woman was employed as an energy therapist.) But, the point is, perceiving something is not the same thing as knowing what it is.

Many of us, however, won’t talk about these things in public — and I’m usually no exception to that — because we know that this information will be misused, as it has been in nearly all writing on the topic, including some writing by autistic people. It will be misused in the ableist version of the noble savage myth. And many of us want no part of that and keep quiet. If people actually respected us instead of putting us onto an idealized pedestal when we talk about these things, and if autistic people who did talk about these things avoided reinforcing the pedestal stuff, maybe we wouldn’t all only discuss these things in private.

But, instead, we become commercialized, as the saintly and angelic (and therefore totally dehumanized) crystal children or something else that seems designed to make certain parents feel that their children are special. And of course to sell books and seminars to people who can afford that kind of thing.

Spirituality is not about being special or propping up the ego. Quite the opposite. It’s about the depth of reality in every thing and every person, the God behind this all. It smashes any ego — or symbol — or anything like that — to pieces, often painfully if the person is hanging onto concepts like this. These ideas that are all about exalting certain people as “more spiritually attuned” would all be destroyed the closer they came to God. There is no place for that kind of thing around God, it’s just not there, it’s one of those damaging illusions people are fond of. Spirituality is not about illusions. One person told me that the measure of whether an experience was spiritual, was whether it transformed you in some way for the better, not whether it gave you some sort of pleasurable emotion.

Spirituality is also not about using poetic language to prop up parts of the status quo that need to change. That can give a lot of people a false sense of peace, but emphasis on the word false. Peace that rests on injustice is not peace at all.

The kind of spirituality I have experienced is easy to pathologize. The lengthy periods of incapacitation, and the experiences themselves, could be (and in some cases have been) described as bipolar, depression, schizophrenia, temporal lobe epilepsy, even in some cases neurological degeneration of some kind, and then treated as if they are medical conditions.

Psychiatry in particular has a strange aversion to the reality of anything spiritual, although several people within psychiatry have told me in private that they could see what I was actually experiencing, because it is after all a fairly universal experience — most people just distance themselves from it, which I could not afford to do, because in my position such distancing would have led to death. Many people on crisis hotlines understood what I was talking about when I said this stuff, and their own fear of these things (when described in more detail than this) made them highly uncomfortable, which most of them admitted.

Psychiatry’s expertise, where it has any, lies in pushing things around on the surface, it does not get into spirituality, and spirituality is what solved a lot of the problems I have that were labeled psychiatric (and the fairly tumultous ongoing spiritual upheaval was also sometimes labeled psychiatric).

Actually having temporal lobe epilepsy is interesting, because in us, spirituality is itself considered a symptom rather than what it is for everyone else. If we experience something in a spiritual way people start thinking we’re having seizures. Even if we’re actually seizure-free at that time. It becomes a way to dismiss our experiences.

There’s also another stereotype of autistic people, that we’re hyper-rational materialist atheists (and there’s an assumption that all three of those things go together). I’m personally none of the above. I analyze by banging patterns together, not by logic. And I see the limits of symbolic thought in understanding the world — and that God lies somewhere past those limits, in between the cracks of the symbol-systems, impossible to catch in words.

Another stereotype runs that this may be true of “aspies,” but that “auties” are inherently more emotional and spiritual. I don’t consider spirituality an emotional thing, it affects emotions, it affects thoughts, but it’s deeper than that.

There’s also some amount of confusion because of the language around spirituality. Since throwing symbols at spirituality breaks the symbols down, a lot of times the language used can mean more than one thing, sometimes meaning both a thing and its opposite, or a thing and an unrelated thing.

Someone asked me whether the time I have spent without rationally contemplating my surroundings was the same thing as a Buddhist concept of no-self, and that’s the sort of confusion I mean. The way the self dissolves or burns away around God is not the same as the way a person experiences the world without contemplating it. There’s a superficial resemblance, but that’s all. This is not at all to say a person cannot experience both things — as a matter of fact I have — but they are not the same thing. The words used to describe them have a superficial resemblance.

There are many people ready to exploit disabled people in the name of spirituality. I once dealt with a woman who seemed to collect us, as well as American Indians, like Slughorn in Harry Potter in a way, only leaning towards spiritual exploitation rather than the usual sort of ambition. We were the same to her because we were all one form of noble savage or another.

I also dealt with a woman for awhile who supposedly dealt with people in spiritual crisis (there is a fairly slimy industry devoted to that that I was not aware of until then), but her advice to me was to quit praying and join a cult. She claimed that only people from India have the kind of experiences I was having, and she herself was terrified by my descriptions of what those experiences were, given that they broke down the rather elaborate defenses that she was encouraging me to maintain around spirituality. (It’s strange to me that so many people use their religion, whatever it is, as a shield against direct experience of spirituality.) When I told her of others I had met who had similar experiences with a positive end result, she dismissed this as rare and told me to forget about spirituality altogether. She also told me that I was not really autistic, but had rather been born highly spiritual or something. She claimed I’d die without the guidance of an experienced (and rich) guru. I’m still alive. When I let her know I was through with her, she screamed at me, and my mother, that I was making a mistake.

Basically, the experiences I’ve had around people’s ideas of disability and spirituality included:

Denying the spiritual reality of what I was experiencing based on the fact that I was too incompetent to experience these things.

Denying the spiritual reality of what I was experiencing by putting me on a pedestal because of these things, and because of the disability equivalent of noble savage type myths.

Extreme hostility towards me by many people who had put other disabled people on pedestals and did not like my comments about the topic. Insinuations that I was very un-spiritual if I did not want to put people on pedestals, and even once an accusation that my refusal to put people on pedestals constituted a psychic attack.

Ableism within meetinghouses themselves, the same as in broader society. Including people who used pseudo-spirituality to reinforce and justify their comfort in being ableist.

Attempts to claim that I am disabled because of the devil (or evil spirits), or because of a spiritual fault.

Denial that I could possibly be experiencing anything spiritual because, oddly enough, of the intensity of my spirituality, and therefore my failure to look like a stereotype of serenity and perfection at various times.

Attempts to actually blame my spirituality on some form of pathology, or to take the parts of me that make certain experiences of spirituality more likely, and view them as part of something the person viewed as pathological.

Attempts to exploit me for the aggrandizement of whoever was exploiting me at the time (usually someone associated with something New Agey).

The “special children are given to special parents” myth. Which if you think about it is damning to disabled people whose parents are abusive, neglectful, or even murder them. But which disabled people are never supposed to challenge, because it “makes parents feel beter”.

Assumptions that I’m talking about it for the wrong reasons, or saying the opposite of what I’m actually saying, and so forth (I really hope that doesn’t happen to this post, which has been extremely difficult to write because of things like that).

I’ve also been lucky enough to encounter some people who knew what I was talking about, and what was happening to me, and were invaluable in their support and understanding of something that very few people talk about openly.

But then there’s what spirituality has meant to me around disability, and that’s something very different, that I, as usual, don’t know how to put into words. What I wrote about life’s infinite richness once, is part of it. Understanding human diversity is part of it. The intrinsic value of people is obvious, and often the intrinsic shape of people, fitting into a particular part of the world, in a way that too often people — either that person or others — fight against in all the wrong ways. I don’t know that I can talk about it, it’s so much easier to talk about other things. But it’s behind nearly everything that I do, and I am assuming that people who look for it will perceive that, without distorting it into things it’s not, and while understanding the limitations on this post (including pretty much all the descriptions of anything). I’ll probably go back to not talking about it much, it’s not really in my nature to talk to loads of people about this at the moment, for good reason.