I am reposting this verbatim from a mailing list. As a friend just said, “That’s A) disgusting, B) deserves a lawsuit.”

Call for Immediate Action:

Below is a letter from a mother regarding an egregious example of mistreatment of her daughter, a member of our special needs community. Brigid, a girl with autism and a serious physical injury, will not be graduating with her class, and will lose out on a scholarship that she has earned to Cornell College because her school district has refused to accommodate her special needs!

We cannot let this stand. As individuals, family members and friends of specials needs, and people who believe in justice, we must immediately voice our support for Brigid and demand that she be given credit for her work and be allowed to graduate with her class! Our children with special needs within the public and private school system depend upon our taking a stand in situations like this, so that other children do not suffer what Brigid has been forced to endure.

Please join with me to demand justice for Brigid, who has worked so hard to appease a school system that has refused to provide her with appropriate accommodations, discriminated against her and publicly humiliated her! Below are the email addresses of officials of the Catholic Diocese of Portland, the Principal of Catherine McAuley High school where Brigid attended and Department of Education officials from the state of Maine.

Please inundate their email inboxes and telephone with a voice of support for Brigid. We must show her and the rest of the world that the special needs community supports its own and stands together against discrimination and abuse of this sort!

Here are the email addresses and phone numbers to contact:

Bill Wood, Parish Services Coordinator
Disability Services
bwood@ccmaine.org
1-877-621-8520

Bishop Richard Malone, Th.D.
Roman Catholic Diocese of Portland
1-207-773-6471
1-207-773-0182 – fax
http://www.portlanddiocese.net/contact_submit.php

Principal of Catherine McAuley Highschool
Mary Kelleher
sredwardmary@mcauleyhs.org
1-207-797-3802
1-207-797-3804 – fax

David Noble Stockford
Policy Director and Team Leader, Special Services
Maine Department of Education
david.stockford@maine.gov
1-207-624-6650
1-207-624-6651 – fax

Pam Rosen
Maine Advisory Council on Education of Children with Disabilities
Maine Department of Education
Pam.rosen@main.gov
1-207-624-6650
1-207-624-6651 - fax

Sincerely,
Rhonda J. Greenhaw Wood

WOARN - Wisconsin Organizing for Autism Rights Now

Here is the letter her mother wrote the Catholic Diocese of Portland:

Dear Mr. W,

I am contacting you because of your role in Disability Services for the Roman Catholic Diocese of Portland. My daughter has attended Catherine McAuley High school for 4 years. She is a wonderful young woman, who works very hard, and has suffered greatly from the misunderstandings, intolerance, and most importantly, from the code of silence surrounding disabilities at McAuley High School.

Brigid is a student with an Autism Spectrum Disorder. In addition, she sustained a closed head injury in March, 2005. This injury resulted in her spending the remainder of her sophomore year at the outpatient clinic of New England Rehabilitation Hospital. Brigid strove hard to regain lost skills and to relearn new skills. She completed the coursework for her sophomore year 2 days before her junior year started.

Since that time, Brigid has been absent from school for extended periods of time, due to a seizure disorder resulting from the closed head injury. She has also missed school due to unrelated surgeries. The Principal has always been informed of absences and concerns by Brigid’s physicians and myself. Brigid was, on several occasions, under physician’s orders to refrain from attending school.

Throughout this time, the Administration of the High School has consistently prevented staff from pertinent knowledge regarding Brigid’s absences. The school nurse was not given copies of physician’s notes, letters or recommendations. The Guidance staff was unaware of many challenges this child faces until the middle of this academic year.

As a result, Brigid has been repeatedly academically penalized for physician ordered absences. This is discrimination. She has been humiliated in public. She has been afforded few accommodations, and little, or no, understanding or compassion. Silence and withholding of information by the Administration have been tools of abuse.

The stress of this constant abuse to a young disabled girl led her to a suicide attempt this academic year. With full knowledge of this, the Administration made no changes in the code of silence. Teachers were left to believe that Brigid was truant, lazy, unwilling to work, when, in fact, the opposite was true. Brigid received a failing grade for an assignment involving small motor control, strength, and coordination.

She was unable to do this assignment to the teacher’s expectations because of a documented disability. Brigid received class participation grades of 0% for physician ordered absences. Work delayed due to seizures were graded as late assignments.

On her return to school following a month of seizures, Brigid completed 3 weeks of work within one week, while keeping up with her current assignments. She did this in order to participate in an extra curricular activity. My daughter made a Herculean effort to complete work, as if she were not disabled, and succeeded. Her reward was cruel. She was pulled off of the bus in front of her peers and informed that she may not attend the extracurricular activity she worked so hard for.

This is just one example.

This Spring, Brigid’s counselor and Sweetser Case management and her Neurologist determined that attending Catherine McAuley High School was adverse to Brigid’s health. Brigid continued to work at home on her assignments, I continued to deliver these to staff as I was able. Some staff were not notified that Brigid would not be in school or that assignments were to be delivered to the office for me to pick up. Consequently, the assignments were withheld.

It took several weeks for Brigid to regain the strength and courage to enter school again. Two weeks ago, the Principal informed Brigid’s counselor that this effort would ensure that Brigid could graduate with her class. With help, Brigid managed to attend school every day. She made a concentrated effort to complete all work to the best of her ability, communicate with staff, and do well on her tests.

Today was the last day of classes. Brigid had work completed. Quizzes, tests, final exams complete. Brigid turned in her essay for English class. Brigid had been one of the few students who had read the assigned text. She received one of the highest grades in the quiz about the book. She had a 30 minute conversation with the teacher about the book in early April. Following this conversation, the teacher reported at a meeting with Administration, myself, and Sweetser that Brigid knew the material well. She later requested that Brigid write an additional essay about the book.

Today, when Brigid gave this essay to the teacher, the teacher informed Brigid that she had decided not to accept the work. Brigid will receive a zero, and fail.

A similar occurrence took place last term. Although the Principal told myself, staff, and Brigid, that work outstanding (due to medical concerns) would be accepted until a stated date, one teacher capriciously decided to ignore the Principal’s decision. Brigid received a failing grade for doing all of her work very well and giving it to the teacher on time.

The Principal’s responses have been that teachers make their own decisions for their own classes and that this matter is not in her control.

Again, Brigid has learned that some people are not true to their word and that this is considered acceptable by an educational leader and a spiritual leader.

This most recent decision on the part of one staff member, if left unchecked, will compromise Brigid’s future. Brigid will be unable to attend Cornell College, or take advantage of their generous offer of a four year academic scholarship as well as financial aide.

The code of silence at McAuley which surrounds disabilities, combined with the lack of acceptance, accommodation, charity, or decency has damaged my daughter’s educational experience, spiritual experience, sense of trust, and quality of life.

I would have notified you of these egregious events during the past 3 years, but I did not know of the existence of your office and ministry. During the past year, I have notified the Bishop, as well as leaders of Catholic Education in Maine. I have attempted to work constructively with the Disability Rights Center, Sweetser Case Management, Family Crisis Services, physicians, social workers, counselors and the Administration of McAuley High School. My daughter has suffered. She has learned some very hard lessons of loss from the individuals entrusted with her spiritual, moral and academic education.

I do not know if you can help my daughter in any way. I appreciate the time you have taken to read this.

Respectfully,
Gayle Fitzpatrick

I have to start out noting that I’ve got problems with the received medical dogma about eating disorders.

I spent a few weeks in a children’s hospital ward where I was one of two kids (the other had cystic fibrosis) who wasn’t anorexic. The kids were encouraged to talk about what made them not want to eat, but then taught firmly that whatever reasons they brought up were not the real reasons. Except one: Control. Body image, no, that could never be it. Pressure to be thinner than your natural body type as a model, dancer, actor, or gymnast, no, that could never be it either. It was always some combination of a desire to control everyone around you, and OCD. That was it. It was final. It was all about you, never about your surroundings, and always a disease that you had totally independent of other factors.

I have watched a staff person who is insecure about her body and often doesn’t eat because of this, being taught the same thing by her therapist — she is “learning” (she did not know this, but apparently her therapist did) that it’s all about being a control-freak.

(If people wonder why I dream about being put on trial and having evidence submitted that I’ve done something I’ve never did, that is to be taken more seriously than I am… yeah.)

Anyway, that’s all to say, that conceptualizing a thing in this manner can automatically depoliticize it, and shift any and all responsibility off of the people who are encouraging a person to think in this way. With anorexia, there are tons of pressures, some quite explicit, to be thin at all times. Not that nobody can be a control freak in that particular manner, but it seemed strange to me that people’s bosses who told them to lose weight or else they’d be out of a job, were not the ones considered control freaks.

There are a number of pressures on autistic people and families of autistic people (but pressure on family becomes the family pressuring the autistic person, often against that person’s will) to adhere to strict diets of various sorts. Some are stricter than others.

There’s the gluten-free casein-free diet. There’s diets based on plenty of dubious forms of allergy testing. There’s “candida diets” given to people who don’t really have systemic candida overgrowth to begin with (such a thing is very rare, generally too dangerous and obvious to be overlooked for decades, is not the same as localized candida overgrowth such as on the skin, and occurs mainly in severely immunocompromised people, which means people such as people with AIDS, not even most people with autoimmune disorders or anything like that), but whose doctors tell them that the natural candida or other fungus in their system is really an infection. There’s all kinds of food additives that get considered absolutely unsafe and impure. There’s diets based on the color of the food. Fad/quack diets are really common and almost endless in their permutations.

This is not to say that nobody should change their diet, or that nobody has food allergies or intolerances, or diseases (such as, in my case, migraines, reflux, and early-onset gallbladder disease) that can react certain ways to certain sorts of foods. But when a person is told because they are autistic (or because they have some other incurable condition) then they must have these other things, something is wrong here. And even, for instance, with migraine triggers, not every migraine trigger triggers migraines in everyone. I don’t avoid the entire list of foods, just the ones that make my headaches worse, and just in the quantities that actually do make them worse (which for some is any at all, but others it’s okay to eat a little bit). A friend and I both have migraines, but have totally different food triggers. It’s also a safe bet that most people who claim you’re allergic to a huge number of different foods, or else prescribe diets based on your “electromagnetic field”, are incorrect. Real food allergies exist, but are often very severe (for instance, eating a peanut causing anaphylactic shock), and usually are a few very specific kinds of foods (and which ones, vary by age among other things).

Enter the idea of orthorexia. The term was coined about food fads, particularly spiritual and health-food food fads, but it applies equally here. It’s an obsession with eating only the most proper and pure kind of foods. You can read this Original Essay on Orthorexia by the guy who coined the term. He himself has experienced it.

He describes one of his patients, whose asthma he treated with a strict elimination diet:

Recently, Andrea came in for a visit and described the present state of her life. Wherever she goes, she carries a supply of her own food. She doesn’t go many places. Most of the time she stays at home and thinks carefully about what to eat next, because if she slips up, the consequences continue for weeks. The asthma doesn’t come back, but she develops headaches, nausea, and strange moods. She must continuously exert her will against cravings for foods as seemingly innocent as tomatoes and bread.

She was pleased with her improvement and referred many patients to me. But I began to feel ill whenever I saw her name on my schedule. The first rule of medicine is “above all, do no harm.” Had I really helped Andrea, or had I harmed her? If she had been cured of cancer or multiple sclerosis, the development of an obsession might not be too high a price to pay. But when we started treatment, all she had was asthma. If she took her four medications, she also had a life. Now all she has is a menu. She might have been better off if she had never heard of dietary medicine.

There is also an entire page called The Psychology of Idealistic Diets with links to articles about orthorexia.

Basically, a lot of these diets appear at first to make people feel better, because of the same thing that happens to people who starve: There’s a sort of giddy euphoria and extra clarity that happens in early stages of nutritional deprivation. Probably occurs in order to get people clear enough to go find more food. But then when that goes away, then they feel like they need to eliminate more foods in order for it to work again. And so on and so forth.

Also, when you’re not getting enough food, you get obsessed with it, so that all you can think about is what you’re going to eat, and how you’re going to get it. This is why dieters in general are so food-obsessed, and one reason I refuse at this point to restrict my diet any more than absolutely necessary. It’s like that guy said, do you want a life or do you want a menu?

A lot of people also start to feel superior to, and look down their nose at, people with less restricted diets. They say that either those people aren’t as committed spiritually, or are throwing their health away, or aren’t committed enough to their values. I’ve received more than one impassioned lecture from people who insist if I don’t do such-and-such a diet then I only have myself to blame if (insert horrible thing and/or health problem here) happens to me People can become evangelical about diets, much like Luke Jackson’s insistence in one of his books that every autistic person of any kind should try the gluten-free casein-free diet, and many parents’ insistence that parents who don’t do the diets on their kids are to blame if their kids remain autistic.

I am, by the way, an ex-vegetarian, an ex-vegan, and an ex-adherent to all sorts of quack diets that were pushed on me pretty hard. I have had people who adhere to all of those diets insist that I ought to go back to them, and in a few cases insist that I “wasn’t doing vegetarianism and/or veganism properly” if I was unhealthier that way (and believe me, I was unhealthier, and not for lack of supplements — although I note, with all of these diets, it’s way easier to adhere to them the more money you have, so there gets to be an element of classism in this stuff too). Some people become adamant that it’s the person’s fault if various diets make them unhealthy, and feel superior to people who “do those diets wrong”. (Note: I don’t care if other people are vegetarians or vegans or anything else, but I do care when they insist that if I am not, there is something wrong with me. Or that I don’t care about animal rights — in fact part of my reasons for lack of vegetarianism are on animal rights grounds that I find more compelling than animal rights arguments for vegetarianism.)

People also substitute dieting for political or spiritual action. They feel more pure, on both political and spiritual levels, if they adhere to exactly the right diet.

At any rate, I mean this post as a warning, especially to autistic people, who are both over-targeted for fad diets (just like with anyone with an incurable condition) and more likely to carry anything of this nature through in the most absolute manner possible. Having been through this, as well as pressure to act like this (especially when I totally rejected orthorexic eating patterns), I’ve meant to post a warning like this for a long time. For whatever flaws there are to it, orthorexia is a useful concept to keep in mind.

I didn’t post links to any of these while they were happening, so here they are:

Disability Blog Carnival #1 was hosted at Disability Studies at Temple U..

Disability Blog Carnival #2 was hosted at The Gimp Parade. The theme was “The Cure”.

Disability Blog Carnival #3 was hosted at Growing Up With a Disability. The theme was spirituality and disability.

Disability Blog Carnival #4 will be hosted at Diary of a Goldfish. The theme will be “different ways of going about things”. Here is more elaboration on what is meant by that theme, and instructions on how to submit an article (your own or someone else’s) to the carnival. A reminder that some people don’t submit their own, so submitting other people’s stuff is really useful. (I didn’t find out disability blog carnivals existed until someone other than me submitted my writing to the first one.) Submission deadline is Monday November 20th.

Edit: The person meant something different, based on thinking I meant something different, and so forth, but I’m leaving this post anyway since it may be useful.

In someone’s response to my post on spirituality (on another blog), they seemed to get the impression that I did not believe in spiritual teachers or mentors. I guess I hadn’t mentioned any (or not explicitly), and had mentioned some people who tried and failed to fall into that category. But actually I do believe such people exist. The trouble is that far more people are trying to sound like such people, than actually are.

This is not to say that a person cannot learn a lot from people who are trying to sound like such people and aren’t. There’s a lot to be said for learning what not to do. But as far as directly learning positive things from people, that’s something different.

I’ve personally never had a spiritual teacher who had a title in that area. I know some exist, but I’ve never met one who had the word reverend, swami, guru, rabbi, lama, etc, around their name. Nor have I met one who is a transpersonal therapist, or for that matter a therapist at all. Nor have I met one who traveled the world giving seminars on spirituality, or who sold tons of books on the topic, or who advertised themselves in general (or were advertised in general) as a very spiritually evolved person, or who was heavily involved in new age pseudo-spirituality. I’ve rarely met one who spoke in any way stereotypical of such people.

This is not to say I’ve never had one, even many.

Within the branch of Quakerism I practice (Quakerism itself, for reference, being a branch of Christianity dating back to the Protestant Reformation, but often distancing itself from other Protestants), there’s a belief that anyone can be called to ministry, not just one person who is picked as a minister. This means that on worship days, you go to the meetinghouse, and you sit silently with everyone else and pray. If someone believes they are inspired by the Holy Spirit to speak, they do. If not, they keep silent. Some meetings can go without anyone saying anything.

There’s always the question, of course, about how much of what is being said comes from people’s egos, and emotions, and all kinds of other stuff like that. One of the purposes of doing such a thing in a group, is so that kind of thing can be hashed out. That depends often on the composition of the group though, whether that happens, and how often that happens. In a group that’s going off track, Quaker meeting for worship can sound like a bad group therapy session. And given that many people join Quakerism more for its reputation for political activism than for its religion, and given the immense class and race privilege of many Quakers, that can happen sometimes. The clerk of the meeting I used to attend and am still a member of, used to remind everyone, “Remember, Quakers are officially called the Religious Society of Friends, not The Loose Confederation of Political Activists.”

But what it means when things are going right, is that the real wisdom tends to be amplified and the ego stuff tends to fall to the side. That means that all sorts of ordinary people who happen to go to meeting, can end up serving as spiritual teachers. Although, also in well-running meetings, it’s emphasized not to exalt the person for saying whatever they have said, but rather to exalt God for allowing the person the ability to perceive what to say.

Which means I have learned a lot from a lot of total strangers who happened to attend Quaker meetings, who I don’t always even know well enough to tell apart, but who said things that were important for me to hear at the time.

The spiritual teachers that I’ve actually known personally, have tended to likewise be ordinary people, and specifically not people seeking a position of power or fame for their religious beliefs, and specifically people who were adamant that confusing them with God in any way was a Bad Idea. None of them filled rooms, and none of them had a glow around them (and most of them, like me, took steps to avoid people who did do that). None of them were particularly fluffy, all of them were down-to-earth people whose spirituality was incredibly practical and based primarily in the real world. None of them encouraged me not to think for myself, or to take their word for things without evidence. None of them guaranteed I’d find everything they had to say comfortable. And I learned a lot from them, too.

And of course, in a somewhat different sense, all people can be learned from spiritually, just like all aspects of reality can, if you know where to look. But as far as people who directly spoke to me about spiritual matters, I have in fact had spiritual teachers, but they have rarely been the sort of person anyone would expect.

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.