“If you’re watching it, you’re part of it. If you’re close enough to see it, you’re in it. There’s no line drawn dividing the two.” —Tony Carey, in a spoken-word introduction to the last song of his most recent album, which is the first in a three-part series about learning from history
He is responding to the widespread belief that there are those who do things, and those who observe, and that those who observe, are separate, and apart, and not participants. He is saying this is an illusion, that everyone is a participant, and that seeming failure to act is — whether correct in that situation or not — an action in itself, with repercussions, for better or for worse, on everyone else involved. Not a non-action.
Zilari blogged recently that blogging in public entails a certain amount of responsibility. It is not an expression coming from nowhere, sent off into nowhere, but something that is read, affecting the thoughts and actions of other people to greater and lesser extents. The Autistic Bitch from Hell concurred. And I concurred privately, although it took me awhile to organize my thoughts into these words for this post.
There’s a sense in which inaction is perceived as background, not foreground. I’ve always thought that in those tests where they see how much a person looks at the background and how much at the foreground of pictures, I would look a lot at the background. There’s a lot of detail in there that people miss, a lot of things that are at least as significant as what people are trying to draw your attention to, that influence and are influenced by the foreground.
My ability to see the background gives me certain social skills that not everyone has. While people are busy trying to deceive me through facial expressions and hand gestures that they imagine are the focus of my attention, I have often caught subtle variations in movement, rhythm, and smell that they are not controlling and that may not even be on their faces or hands. In some cases I have missed the deceptive expression entirely and gone straight to what they were trying to hide.
Not that I am perfect at this, I am not a magician, just someone with an unusual social skill, although it is not as unusual as many would think among autistics. It’s not tested for because most people wouldn’t even think to test for it, and some of the tests of reading people explicitly confound it by restricting the range of correct answers, the aspects of other people that are supposed to be read, and the role of deliberate conscious effort in warping perception.
I believe this attention to only certain aspects of a person as “foreground” also account for the fact that I’m regarded as unreadable and potentially empty — or else read completely backwards — by a large number of people, but yet there are many people who can read several accurate levels of meaning in my so-called “background” aspects. It is not that I am inherently mysterious as a personal quality, but that people don’t know what to look for.
“Background” is often seen as some combination of taken for granted, static, passive, imperceptible, uninfluential, uninfluenced, devoid of accountability, empty, neutral, and non-existent. Since it is usually the opposite, and since everyone has something that they perceive as in this category without being aware of it, this is one thing that makes it so interesting and important. And overlooked.
If we do not perceive it, it is not there. If we do not perceive the origins, there are none. If we do not perceive the effects, there are none. That is how people tend to think.
When people wanted me to look at a very specific foreground on Autism Every Day, I spent most of my time exploring the “background”.
The questions that they wanted me to ask, and answer, were about the feelings of the mothers in the film, one or two specific things they viewed as causes of those feelings, and one or two specific things they wanted me as the viewer to do as a consequence of those feelings.
Instead, I looked at things like, what were the children, non-autistic and autistic, feeling and experiencing? What size, shape, color, and style were the rooms, houses, yards, schools, parks, clothing, and cars? What aspects of their personal and cultural backgrounds really caused those mothers’ emotions to be as they were? Who would be harmed by this particular usage of those emotional reactions as propaganda? Who was left out of or sidelined by this portrayal of things? Where were the fathers? What was everyone like when they weren’t on camera? What were the real consequences of this video for autistic people? What were the subtle reactions, and non-reactions, of the people in the video? Who looked the most oblivious, the auties or the non-auties? What was left out? What could I tell from what they chose to leave in, how they chose to edit it? What, off of the video, was the status and affiliations of the mothers in the video? What would happen if some of the mothers stopped spending oodles of money on probably-unuseful therapy and oodles of energy grieving and freaking out, and used that money and energy elsewhere? What caused the mothers to view their children as unresponsive when the children were clearly responding to their environment in a great deal of ways constantly?
And so on and so forth.
In other words, I was looking at everything I wasn’t “supposed” to look at and then some. I was not doing this entirely on purpose. I was doing this because this is what I do, the same way I can’t really help looking at the so-called “background” of people’s movements rather than the “foreground” image they are projecting.
Once, I was watching a Getting the Word Out video with a non-autistic person present. I grumbled a bit about it and the person said, “But what if she really feels that way?” She was very agitated that I would question someone’s “feelings”.
The Getting the Word Out video was of course a very carefully crafted piece of propaganda, which Kathleen Seidel dismantles beautifully in her blog post about it. It was not a person’s random expression of their feelings.
But even if it was her feelings.
So?
It is many people’s honest feelings that women are inferior to men, that Jews or Muslims are inferior to Christians, that people of color are inferior to white people, and so forth. Some people will even go so far as to advocate killing people for being in any of those categories, or to have considered killing people for being in any of those categories. Some societies sanction such killing, either explicitly or tacitly.
The “feelings” that people have, do not spring out of nowhere, of course. They are learned, through countless little “background” attitudes that are not questioned. They are reinforced through several well-known cognitive loops, and through subtle and not-so-subtle propaganda (it is the nature of propaganda, like the Autism Speaks video, to be persuasive).
The “feelings” that people “express”, do not go nowhere, any more than they come from nowhere. They affect people, they affect other people’s attitudes, they may reinforce or contradict attitudes in the dominant culture. When they reinforce attitudes in the dominant culture, and the “feelings” stem from highly destructive attitudes to begin with, these are not innocent expressions of feelings. Particularly not when expressed in a method meant to be viewed or read by a national or international audience. Publishing is public, it is different from having feelings in private.
When someone publicly expresses a desire to kill someone based on a particular characteristic, uncritically, in a culture where the lives of that kind of person are already devalued, the technical term for this is hate speech. Hate speech is kind of like slander or libel, only instead of smearing the perception of the character of one person, it smears the perception of the value and worth of the lives of thousands or millions of people.
“What if a person really feels that way?” Well, then they feel that way. And? As I said before, feelings don’t come from nowhere, and they do not affect only the person having them. They do not go to nowhere either, when expressed. There is a cultural trend at the moment that says that everyone has the right to express any feeling anywhere. Rights usually go with responsibilities. If you publicly express the “feeling” of wanting to kill someone, you have a responsibility to express it in a way that won’t make it sound remotely okay, and that goes double or triple if the person you want to kill is part of an already-devalued group. Your “right” to express your despair or self-pity whenever and wherever and in whatever manner you feel like, does not trump other people’s right to be safe (which, regardless of group-therapy trends, is not the equivalent of “feeling emotionally safe”) and alive.
Nobody who is aware of something is truly a bystander. We are all part of the culture that currently contributes and responds to the devaluation of the very lives of disabled people, including autistic people. How we respond, especially publicly, to the notion of some kinds of people being more disposable than others, some murders of innocent people being more understandable than others, has a part in shaping these attitudes. Reinforcing them, or fighting them. Every one of us is part of this, whether we know it or not, whether we feel like it or not, and whether we want it or not. It’s not optional.
When someone publicly states, “I understand the despair that drove the mother to feel that way,” they have a responsibility not to simply leave it at that. There is a difference between despair and homicide. There is an enormous difference between despair, and wanting to kill one child with a devalued characteristic but staying alive only because you have another child without that characteristic. One less-worthy child, one worthy child. If you don’t point this or something like it out when you publicly identify with that mother’s “despair,” then you are effectively strengthening her voice. If you don’t heavily weight things so that your identification with that despair is drowned out by the wrongness of the act, then you are effectively strengthening her voice. It’s not enough to add a tiny sentence saying “But it was wrong,” in the midst of a flood of opposite sentences. It’s the overall tone that people will remember.
Identification with people’s feelings is a powerful thing. When you identify with certain feelings, you are less likely to view anything done by someone with those feelings as wrong. Your identification with those feelings might cause you to add your voice to the “expression” of those feelings without adding your voice to the condemnation of some of the ways those feelings are “expressed”. Your identification with those feelings might leave you more susceptible than average to clever, calculated propaganda that plays on those feelings. Your identification with those feelings might even make you hostile to anyone who says there are wrong ways and times of expressing those feelings. I don’t know how many people have claimed that I hate parents or attack parents, merely because I don’t think it is ever okay for someone to publicly, without heavy qualification, say things like “I’ve wanted to kill my child because of who she is.”
I should note, by the way, that for many of us, mere expression of the intent to kill someone “valuable” is enough for involuntary commitment as a “danger to others”. In one case, a man in South Africa was jailed for eight years merely for planning the murder of his son. I am not advocating involuntary commitment, but there is an enormous disparity when people can say these things for national or international audiences without someone at least calling Child Protective Services.
It should be noted that public dehumanization of this nature is considered the third stage of a potential genocide. “Dehumanization overcomes the normal human revulsion against murder.” -Gregory H. Stanton.
We have a responsibility to combat that dehumanization wherever possible, and that responsibility overrides any individual “right” to express one’s “feelings” all over the place. It also interests me that so many people who have had these “feelings” are so hurt by the concept that they shouldn’t “express” them everywhere, view themselves almost as being oppressed by the notion that they shouldn’t.
To anyone who feels that way, take a serious look around you. Look at how often “feelings” like yours are “expressed” right and left, with near-total impunity, while people who say “Hey, murder is wrong” are more likely in these instances to be castigated for disagreeing with these “feelings”. Look at how often the murder of a disabled person is considered okay, and the murder of a non-disabled person is not. Look at how safe non-disabled people are in these circumstances, even at times from punishment for murder, and how totally unsafe disabled people are, even from murder. And then come back and try to look all “oppressed” for us again. A lot of us won’t buy it, although I’m sure the majority of the surrounding culture will, and will give you all the sympathy and pity you ever asked for, while condemning those of us who speak out against it as trampling on your ever-important feelings. Between our lives and your feelings, I know which I’d choose.
“Did she just say what I think she said? On national television?”
My staff nodded grimly.
I was at her house, watching The Mayor of the West Side, a movie about Mark Puddington, a teen with Cornelia de Lange syndrome, and his entangled and disturbing family dynamics.
His mother was overprotective, believed she was the only person in the world who cared about him, couldn’t imagine him living without her, frequently prevented others from helping him become independent of her, and had just announced to the world that she still thinks that maybe she’d have to “take him with her” when she dies rather than allowing him to live without her.
In other words, she’d announced intent to possibly kill her son in the future. Throughout the rest of the movie, she never retracted her statement, and nobody seemed to be saying anything to her about it. I saw no involvement of Child or Adult Protective Services, nothing. I still worry about her son.
There’s love between them, but on her side of the relationship there’s something else that’s more disturbing than plain old ordinary parental love. There’s the mentality shared by animal hoarders, who believe nobody could care better for animals than they could, nobody could love animals like they do, and who consequently have too many animals to take care of, so the animals start dying. Some collectors go on to keep the corpses of the animals around, either preserved or rotting.
I am not saying that “disabled people are like non-human animals,” there. That is not my intent. What I mean is that there’s a kind of attachment that goes beyond love into a complete detachment from reality where the object of said love is concerned, whether that object is disabled, non-disabled, human, non-human, etc. I saw that kind of reality-warped attachment so strongly in the mother in that video that I still fear for her son’s safety.
In 1983, Adam Benjamin Clark was murdered. (Corrected to say: His mother’s boyfriend was convicted of the murder, not his mother. See comments for more on this.) His older sister Amber has a memorial page called Remembering Adam, which includes her account of what happened, newspaper accounts, and their father’s photo essay. I have to warn you that I’ve never been able to read it without crying.
Adam Clark’s mother tried to blame her son’s death on Cornelia de Lange Syndrome making his body fall apart. (Cornelia de Lange Syndrome, even when aspects of it become fatal, does not cause the kind of injuries Adam Clark had. The potentially fatal aspects usually have to do with internal organs like the heart or digestive system not functioning properly. Adam Clark died of crush injuries.)
I’d known about Adam Clark since long before I’d seen The Mayor of the West Side. That was one of the things that made the mother’s statement so horrifying. I knew that this sort of thing was something that really happened, and that happens to disabled people more often and with more impunity than it happens to non-disabled people. I knew that for many people, the mother on the screen would have words that went unquestioned: “It’s just her feelings. Harmless. At least she talks about them.” And I would know that were her son not disabled or some other devalued category of person, nearly everyone would question her words. She did say this. On national television. And who besides me commented? Did anyone notice?
“She’s saying it for an international audience.” This time I was not so shocked. I was watching Autism Every Day. And by now anyone who’s read the Autism Hub blogs for long knows what was said. Again, no sign of Child Protective Services.
CdLS can cause a person to be autistic, and usually has definite visible physical signs. Nobody thinks of people being cured by it, except by the usual eugenic elimination procedures. Some forms of it can kill though. Like the Rett community that Autism Diva describes in the post I just linked, the CdLS community mostly focuses on their love for their beautiful children and on how to identify them, teach them, and keep them healthy and happy. The disturbing stuff is still out there, as I mentioned above, but it is not as dominant as in the autism community. Parents of autistic children without identifiable things like CdLS or Rett’s, still hold out hope of a cure and hold massive pity-parties for their children’s mere existence, even though most of their children are not facing the potentially life-threatening consequences that children with CdLS or Rett’s are. Although some of their children do undoubtedly have things like CdLS or Rett’s that is undiagnosed, and like Autism Diva I wonder how they would have to change their approach if they found that out.
At any rate, Allison Tepper Singer also described, in a high-profile video distributed internationally, wanting to kill her daughter for being autistic, but only stopping herself because her other daughter was non-autistic. If anything ever happens to her non-autistic daughter, I fear for the autistic daughter’s safety just as I fear for Mark Puddington’s.
On May 13, just before Mother’s Day this year, three-year-old Katherine McCarron’s mother murdered her by putting a plastic bag over her head and suffocating her, for being autistic. Instead of people writing to the newspapers and the district attorney to say that autistic children need to be protected from this, most people I’ve seen have been writing to the newspapers and the district attorney have been writing to support the mother.
On May 14, Mother’s Day, in Albany, Oregon, 19-year-old Christopher DeGroot’s parents locked him inside their apartment and then set the apartment on fire. He died in the hospital. He, also, was autistic. Someone on a closed mailing list I am on, said basically, “Expect more sympathy for the two cats who survived the fire than the autistic man who didn’t.”
These are two people who will never, ever experience life on this earth, or any feelings, good or bad, again. They are gone. Everything they were or could have been has either vanished or been sent to the afterlife, but it is not here right now. These are two human beings who have been murdered. That these facts are going to be shoved into the background, to focus on the feelings of the murderers as foreground, is appalling.
The majority of support, anywhere, is going to go to the “feelings” of their murderers. I have a friend who runs the Murder of Autistics webpage, and he gets angry letters from the families of the murdered autistic people, not angry because they were murdered, but angry because he steps on the families’ “feelings” by portraying it as just as horrible as the murder of anyone else. How about showing some support for the feelings and lives that Katherine McCarron, Christopher DeGroot, and Adam Clark, will never have? Our reactions are not merely those of uninfluential, uninfluenced bystanders, we are people within a society, and our action, or inaction, will affect a lot of people. I know what my reaction will be: To bring the “background” that these people’s lives and futures have appallingly become, into the foreground of the discussion. These are innocent people, some murdered, some always in danger of murder, and the not-so-innocent are the ones most people are going to want to sympathize with here.