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.

Autistic people are very different from non-autistic people, and those differences run all the way down to the core of personality and awareness. And there’s nothing wrong with that! It’s our nature as autistic people to be different in those ways–it’s the way we’re supposed to be… Even though non-autistic people may hate or fear or pity us for being different, I think they really need us to be just the way we are. We’re the ones who notice that the emperor isn’t wearing any clothes.

— Jim Sinclair, What Does Being Different Mean?

I’ve quoted that before, but it’s relevant again. Oddizm says that autistic people are ’eminently hate-able’ by many non-autistic standards, and cites social reasons for that. I think the problem that many people have with us runs far deeper than that. Oddizm urges people to ignore the lack of social niceties and listen to the content. Which is good advice. But quite often, the “problem” is the content.
Autistic people violate more than expectations. We violate taboos.

We do not just violate one taboo, or one particular set of taboos.

We do not just violate the “known” taboos, the taboos that aren’t really all that taboo. We do often violate those, but we also violate the ones that are so taboo that few people speak about them and even fewer know what they’re talking about when they do.

I do not mean that we all violate all taboos all the time, or that none of us ever uphold these taboos. That would not be true. Any given autistic person may violate some taboos and not others, may even uphold still other taboos.

I also do not mean the taboos in any particular culture, such as the society I happen to live in. This is beyond particular culture.

We perceive and react to things that other people have reached an agreement not to perceive. We mention things that there are tacit agreements never to mention. We call people’s attention to things that they’d rather not pay attention to. We do things that everyone else has agreed not to do, and in some cases not to even speak of doing. The agreement people reach is not a deliberate agreement in most cases, it’s a part of the process of growing up within a culture.

We don’t do this because we lack social awareness. We do this because we have a different kind of awareness, and a different kind of reaction to the world. We don’t do this because we are pure innocents who just don’t understand. We do this because we have a different kind of understanding. To reduce this aspect of us to a state of “purity,” “innocence,” or “ignorance” insults us on many levels, and not just the obvious one.

But, regardless, we do it. And the responses we get can range from destructive degrees of violence and hate to destructive degrees of reverence and awe.

I am “lucky” enough to break some of the most fundamental taboos of the society I live in. I am not talking about sex. Sex isn’t as taboo as people think it is, it’s all over the place. I violate rules that are so strict that thinking or talking about them or even noticing them is not something most people are willing to do. In fact describing them can invoke a degree of terror in people that I’m not willing to invoke by describing them. Fortunately, describing them is not all that necessary in life, and I know a few people I can discuss this with.

In the past, I was more obvious in terms of some of the taboos I was breaking. People’s responses were strong. I would be put on a pedestal one moment and stomped into the ground the next. People reacted to imaginary versions of me. People can be very dangerous when terrified.

I learned to follow the conversational aspect of the taboo, to the point of even refusing to name it, but I have never followed and will never follow the behavioral aspect. Still, though I am an extremely honest person, there’s an extent to which I have to, if not actively lie, at least consent to and go along with having lies created around me by people with me, in order to have most relationships with people. A lot of what people imagine of me simply isn’t there, but there is no way to negate that without causing serious problems, so I’ve learned it’s better for everyone involved, even if what others imagine is negative, to let them imagine. Most of the time.

Not all autistic people break those particular taboos, although a large number break at least one of them. But we do break taboos, both strong and weak, both spoken-of and unspoken-of. And breaking deeply rooted taboos means incurring wrath and even hatred. We are calling attention to things people desperately want to avoid calling attention to, and we are not engaging in some people’s most highly cherished but possibly-unspoken beliefs, and that causes a strong reaction.

It’s also our job. Part of our role in society is to notice what other people miss. This is not a better role than the roles of any other kind of people, but it is an essential one. It requires being outside of at least some taboos, because people miss things as a result of taboos as much as anything else. It requires being outside of at least some of the kind of filtered perception that non-autistic people have trouble escaping. It requires autistic people. Not a whole society of autistic people, but autistic people as an essential part of society.

When I say this does not make us better, I am trying to guard against the pedestal effect. We are not, as I have been called, “purer” than most people, and we are not “more human” than most people. The stereotype that all stems from is something that can exist only in people’s minds. Real people are not like that, although real people can be misrepresented that way. We are also not “more necessary” than any kind of people or the “next step in evolution” or any of that. We do have a part to play, however, and we play it, no matter what kind of communication system we have, no matter what our professional labels are. It is not wrong to acknowledge that.

Not all roles in a society are valued, noticed, or loved by most people within that society. The roles autistic people play are often unnoticed, and when noticed they are often devalued, hated, and shunned. This does not make us, or our roles, unimportant. The taboo aspects of the way we operate in those roles, do make us “eminently hate-able,” and make it very easy for people to justify what they do based on rage or hatred. Not all negative reactions to us stem from this, but some of the strongest of them do.