opaque (adj) – (1) not transparent or translucent; impenetrable to light; not allowing light to pass through, (2) hard to understand or explain
The Mystery of the Squirrels
When I was 4, we moved to Canberra. On (some? all? I don’t remember) Sunday mornings, we called my grandmother in Dallas.
This, for those of you in the internet generation, was a really big deal. I don’t remember any other intercontinental phone calls from my childhood. You had something to say to someone on another continent — and my dad’s job requirements meant my parents often did — you got some of this really flimsy lightweight blue airmail paper and you wrote out whatever you had to say in your most squinched-up handwriting on both sides to save money and then you put it in this little Por Avion envelope and paid more in postage than you thought reasonable so it didn’t go surface mail (surface mail meant by ship, and it took long enough that when I was in Prague (we ate Australian food in Canberra), killing the weevil infestation in my food was the first step of eating many many meals and snacks involving American food, all of which got to Europe by surface. I do not like food with weevils in it to this day) and they wouldn’t die of old age before it got to them.
Anyway. My dad really liked his mom a whole lot and she spent a lot of time pretty much unable to leave her home, just sitting there and watching what went on in her back yard (the implications of this, as you will see, were lost on me until much later), so she got phone calls. My other grandmother had the cash to come out every few years, see us, drink a lot of gin, and show off her latest fur coat. So she just got letters in between episodes of freaking me out. Yeah, I have reached the age where “the olden days” didn’t all happen before I was born any more. But I digress.
At some point in there, I asked my dad why we had to call my grandmother so early, and he explained that although we called her early, she did not receive the call until much later in the day. Now, by the time I was 4 I had a very battered (so obviously much-used, but in fairness sometimes used for football (soccer) rather than geography) world globe. I understood that the world was round and that it both rotated and revolved, and that noon was when the sun was high up above, but I had not yet extrapolated well enough to have sorted out time zones. (I would figure that out a little better on a surface trip across the International Date Line when I was 6. I would also get thrown into a pool by a temporary devotee of Poseidon to celebrate the event. Learning about the world is not risk-free and sometimes requires a change of clothes.) The fact that the same moment occurs at one time in Canberra and at a totally different time or even on a different day in Dallas was utterly opaque to me.
So as I puzzled out how we could be talking to Grandmother at a different time than she was talking to us, it occurred to me that perhaps this was related to the fact that the only bloody thing the woman ever talked about was the squirrels in her back yard. At that time the children I knew mostly talked about things like their decision to never invite me to their houses, but the men I knew talked about the geopolitical situation, which had its boring moments, but which I found a lot more interesting than a group of squirrels in Texas. (I never had a clue what the women were going on about. This is not a fact about my relationships with men and women or a judgment about the conversation of housewives, which most of those particular women were. It is a fact about my complete inability to understand my mother, who was my conduit to the conversations among women, and my partial ability to understand my father, who was my conduit to the conversations among men.)
The conclusion I came to was that the telephone had the ability to predict what my grandmother was going to say a few hours later, but it really could only do that if she stuck to very very basic topics. And thus we had to discuss squirrels. Faced with this sad yet apparently immutable limitation of the predictive telephone technology, I listened to her stories of fights at the bird feeder and chases through trees as patiently as I could, produced a requisite sentence or two about my life, told her I loved her (I did not have a very clear sense of who she was, as I was 6 before my mother explained human reproduction, and I did not have an emotional tie to her yet at all, as I reliably saw her briefly every 2 years from my birth until her death, but I was a lot more pliable at 4 than I am now and, all evidence to the contrary, I don’t actually enjoy making other people feel bad), and went about my business.
Grandmother talked about squirrels during the whole time I knew her. For the record, I wish I had learned to hear the non-explicit content in her conversation, the isolation, the boredom, the loneliness, the repeated efforts to connect with her distant grandchildren the way she did with the ones near her, before she died. I have the impression that I would have liked her a lot if I had known how to connect. And she loved me; she spent real care showing me that.
Protective Opacity
One of the earliest lessons I learned was to hide everything important. The best phrasing I have for it is preserved as echolalia from some book dealing in some way with terrorism (I don’t recall the details) I read when I was 8, in DC, while my father was in Czech language training. “No man is strong who is weak for someone weak.” But I knew that long before. My mother took my baby blanket because it mattered too much to me. She slathered my thumb with something foul-tasting because it was a source of comfort, and then when I hid behind the couch to soothe myself anyway she escalated. She took my stuffed animal. She took a dog. She took what I liked to read, the clothes that felt good on my body. She took my relationships with my siblings, my cousins, my aunts. She delighted in institutionalizing me. My mother once — after my grandmother’s death — smashed the frame of my father’s favorite photo of her during an argument. She once created a sitution that forced friends of hers to flee their home with their children in fear. She used what other people loved against them, too. But as far as I can tell, I was her favorite target.
Most of what I loved, what made me feel safe, disappeared regularly anyway. That is the life of a child who moves a lot. There is nothing you can do about that except to do your best not to love what cannot be trusted. But some things I could protect to some degree by hiding how I felt … and later, as it became clear what the proliferation of unspoken but rigorously enforced apparently random social rules meant for me, I learned to get the opportunity to be around the people who were important to me by being as useful to them as possible while studiously pretending I did not care that they were there.
And then came institutionalization, where the slightest hint of connection to another person meant punishment for you and them. And then came the long years of exile, when again I forced myself not to love, that I might survive.
I was always opaque to other people, as they were to me. More so, I suspect, than many people are opaque to each other — though the old AA slogan “Don’t compare your insides to other people’s outsides” tells me it is a more universal experience than the professional literature of those with the dominant neurotype about the minds they try to deny would suggest. I learned to strengthen and fortify that opacity as a way to protect myself. I learned that opacity was a key to survival. To emotional survival every day, and to physical survival all too often.
It amazes me when I see people who just casually tell people they love them, or whose affections are visible, who display their attachments as if they are nothing. I wonder if that casualness is an act. I wonder if they understand the beauty of it. I wonder if the terror of ostracism runs deep and they simply are very brave, or if it ever is as effortless as it looks. It took me a long time to learn to see any but the most verbal and explicit of these expressions, but I watch as many as I can see, and I force myself to try to copy them. Panic every time. I can still almost never force myself to initiate touching another human being, even when I know intellectually it would be welcome, no matter how much I want to. Casual touch between friends fascinates me. Maybe I will get there. I choose as much as I can not to live according to many the rules experience has taught me are necessary for survival, and it’s much better, but that doesn’t mean it doesn’t still feel like careening toward disaster.
Personal Symbol-Sets
People keep souvenirs. Mementoes. Symbols of things that are important to them. If you are a traveler you may have a snow globe from a city you loved. If you are a serial killer it may be a victim’s bracelet. If you are a parent it may be your child’s first pair of shoes.
But the souvenirs are clues to what matters, and as symbols they come to matter in themselves. (In a psychology class once we were told of an experiment in which students were asked to bring photos of their mothers to class … and then asked to gouge the eyes out of the photos. Photos (in those days) were pieces of colored cardboard. Gouging the eyes out of a photo hurts no-one. It is purely symbolic. But the people who could do it were considered pathological.)
Between the fact that other people can rarely predict what connections I am going to make between things (though they can often follow them once they are explained) and the fact that I prefer them not to paint targets on things that matter, the souvenirs I collect are often opaque to other people. And I learned to hide them deeper, at the ends of long chains of connections.
Here is an example with short chains. I have some bowls out of which I eat. Some are blue and some are orange. I don’t like the color orange, really, but I bought orange bowls on purpose. If you gave me grey bowls to add to the stack, I would thank you for your kindness set them aside, although I love grey. (If I really like you, I might find a different purpose for them.)
I assume that makes no sense to you. Why would anyone reject bowls in a color they like, in favor of bowls in a color they don’t? They aren’t an inheritance or gift. I bought them. And that is fine. The opacity of my fondness for these specific bowls is fine. You don’t have to know or care why it matters to me. If you do care, I don’t have to tell you. If I want to, you don’t have to listen.
But I have reasons. There are two chains of associations that mean those bowls are, for me, souvenirs of things from far enough back that every contemporaneous souvenir of the thing was taken from me.
First, the blue/orange combination reminds me of a Joe Penhall play that I put the effort into reading. (Plays are hard. They are like novels, which are also hard, but with all the bits that cue me into what is happening stripped out. I don’t read a lot of plays now that the advantage of a tiny book that I will not be able finish within 50 hours of reading has been canceled out by portable e-text. In fairness I didn’t read that many before, but I read even fewer.) And the Penhall play reminds me of specific people in my past.
Second, even though the shade of blue is wrong, the blue/orange combination reminds me of the covers of current editions of some books that are reprints of books I read in editions with dark and light green covers, and those books remind me of the 18 months of my life when I could imagine a future for myself that involved a career I loved and being surrounded by people I loved, and which I wanted.
So no, more bowls might be convenient, but that convenience would not be worth the loss of the reminder of valued relationships that the sight of a stack of blue and orange bowls gives me.
People think and feel. Everybody does. They make connections and they use symbols. Their communication, their emotional states and their symbol-sets may be so opaque to you that you have no sense that they exist, but they do. And if you go from “I can’t see it” to “It doesn’t exist,” and build your relationship on a default presumption that there is nothing there, you get so much wrong.
A professional is capable of looking at my insistence on the bowls being blue and orange and diagnosing a pathological rigid insistence on sameness. (I’m an activist. If I have a pathological rigid insistence on something, it’s more likely to be the unsatisfactory nature of certain samenesses.) The prescription? Force change that upsets me, to teach me to tolerate change.
A professional is capable of looking at my (in reality hypothetical) failure to use a gift of grey bowls and diagnosing a pathological absence of “socially relevant behavior.” (This is seeing the situation only from the perspective of the gift-giver. I have a perspective, too, and social interaction is a two-way thing.) The prescription? Train me to display behavior that validates the giver.
A professional is capable of looking at my attachment to this stack of bowls and diagnosing a pathological indifference to other people demonstrated by a preference for things. (My attachment to a stack of bowls displays my attachment to other people.) The prescription? Teach me to forego expressions of what matters to me in favor of empty ritualistic behavior that others find reassuring.
There is nothing wrong with people finding various things opaque, and I’d be a hypocrite to tell you otherwise. I have melted down, recently, with people who work their asses off to include me, over the sheer opacity of “our” conversations. What’s wrong is the assumption that because you cannot perceive the humanity in a person, it isn’t there.
7 Lost Years
For almost the entire time we were both alive, I missed Grandmother’s efforts to connect with me. I did not see them. This wasn’t just because I didn’t understand time zones or because I did not yet understand how extended isolation saps the ability to connect. I’m not good at picking up on this stuff. It has taken years of effort to learn, and I still tend to need to concentrate. Part of that is the communication chasm that comes with efforts to signal, and receive signals, across radical neurotype differences, and a lot is the many times it was driven home to me that nobody would ever want to connect with someone like me anyway. (Now, think of the effect it has on autistic children that everyone around them is socialized as hard as they are to think autistics are defective in the area of social reciprocity.)
It wasn’t just the time zones. There was so much more going on than just the time zones. There was the fact that I was struggling to connect even with the people I spent hours and hours with, and I was having 60-second phone chats with my grandmother at most once a week. And even if it had been the time zones, I was 4. The ethical issues involved were far too complex to expect a 4-year-old to work out by himself.
But here’s the thing: I was asking the right question. “Why is this woman who wants to talk to me constantly telling me about squirrels?” And when confronted by the impenetrable opacity of a basic fact about the world, and my failure to grasp what I didn’t know, I came up with an explanation that covered all the known facts, and then I stopped asking for 7 years.
I regret those 7 lost years
That pattern is not limited to 4-year-olds. People enact it all the time through their whole lives. Moreover, at a certain point, in certain contexts, when enacted by people with power over others’ lives, it becomes an ethical failing, because it predictably and reliably hurts people.
A Fact About the World
Here is a fact about the world: everybody thinks, everybody feels, everybody makes connections, and everybody uses symbols. Here is another fact about the world: when someone thinks, feels, makes connections, and uses symbols and you treat them as if they don’t, you harm them.
This is the moment in the conversation where the university-ordained and self-proclaimed disability experts start lecturing me. “…not like my child…” – A Parent. “…unethical to assume…” – A Bickba. “…theory of mind deficits…” – A Researcher. “…functioning level is: breathing…” – A Professional. “…no mind at all…” – An ADAPTer. “…parents have a different perspective…” – A CIL Staffer. “…no place in disability rights…” – A National-Level Independent Living Leader.
Then if I stick to my guns sometimes there is a pause for some saccharine ablesplaining. “Cal, you need to understand, not everyone is like you.”
Then if I stick to my guns the accusations begin. “Stop assuming things about me.” “You would do the same thing.” “You just want to hurt people.” “You don’t care about anyone but yourself.”
Then if I stick to my guns they start the name-calling. “You are inappropriate … bitter … disgusting … hateful … a troll … a bully … unacceptable.”
You know what? Here is a fact about the world: everybody thinks, everybody feels, everybody makes connections, and everybody uses symbols. Here is another fact about the world: when someone thinks, feels, makes connections, and uses symbols and you treat them as if they don’t, you harm them.
Weaponising Simon’s Humanity Against Him
I once knew a man I will call Simon. I worked in his group home.
Simon had about a 6-word spoken vocabulary and no signs. No line drawing vocabulary. No object exchange vocabulary. No AAC of any kind.
One of his words was “ho-ho.” It meant Santa. Another was “bip,” probably derived from “bitch,” and it expressed an attitude of humorous insolence or angry defiance. (Simon was freaking awesome. This fact somehow seemed to elude most people.) And then there was “Kenny,” pronounced “Keeeeeeehhnnnnnnny” in a voice quavering with emotion and with lots of hand-flapping.
I like classic country. I used to like some Kenny Rogers songs. Knowing Simon burned me out on Kenny Rogers. He was enough of an enthusiast that his stereo was padlocked into a box to prevent him smashing it (again) in his excitement at the mere thought of listening to The Gambler. You could cheer him up for hours by leaning over and whispering, “You picked a fine time to leave me, Lucille.” When we would go places, which was not an entirely relaxing thing to do because Simon was an extremely energetic man, I would take photocopies of photos of Kenny Rogers to hand him, to buy a few seconds of standing still until he could not bear the joy and was forced to shred the paper into confetti. During the time I knew Simon, I listened to every Kenny Rogers song there is more times than I could bear, except Ruby, Don’t Take Your Love To Town, because Simon had nonspeaking housemates I could not communicate effectively with, and I have an ethical objection to playing that song for disabled people without their consent, and he never seemed to miss it. I just made him mix tapes of everything else and played those.
Simon was on behavior plans at all times. Because the thing that he loved most that staff could control was Kenny Rogers music, it was supposed to be tightly regulated. Do these 9 things in sequence without doing any of those 14 things (all but impossible for him), one side of one tape, often shortened to one song. It was a point of real tension.
“Too bad, Simon, you lose Kenny for this shift.”
“Bip!”
(Tell me again how group homes are not institutions?)
One day, when Simon’s family came to take him out, something that they did very infrequently (there was a learning curve to enjoying Simon’s company in public and he had grown up in a state school, so although they loved him, I don’t think they found their time with him very comfortable) and also something Simon loved beyond measure, I learned something important: ever since Simon had been institutionalized as a small child, whenever his beloved parents had come to see him and take him out, they had played Kenny Rogers songs for him in the car stereo.
Simon didn’t really speak. I don’t know how much language he understood, or to what extent he followed staff commands because he could read body language or gesture. He was not included in much conversation: most of the language addressed to him was “prompts.” I did not know how to communicate effectively with him. I do know he thought. He felt. He loved. He got angry. He made connections. He used symbols to evoke positive memories. And in failing to see that, to see him as human, to see him as their moral equal, in hijacking his most valued known symbol and using it to control him, the disability experts who designed and implemented the institutional system he was trapped in did him real harm.
In seeing people like Simon as in need of supervision rather than support, as in need of external control rather than self-determination, in trying to be their voice rather than their megaphone, many “advocates” do them harm, too. And it is especially distressing when it comes from disabled people who would fight like hell to stop anyone doing the same thing to them.
Assume humanity.
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