May 21, 2016

Posted in Uncategorized at 12:28 am by chavisory

I know I’ve said this before, but every now and then I run across something that makes me feel the need to say it again, and today was one of those days in multiple ways.

I know that Dan Savage has said and done some outrageous and problematic things.  But “It Gets Better” really, really isn’t one of the worser things he has ever done.

When I was a kid, no one told me it would get better.

Almost everyone told me that it would only get worse.  Parents.  Teachers.  Adults of every stripe continually told me that adulthood was just awful boring drudgery where I’d have to be better at pretending to be someone more socially acceptable than who I was if I was ever going to make it, that the time I was living in was the best time of my life and I should learn to appreciate it.

Our guest speaker for Senior Week in high school actually, in fact, told us that “It’s all downhill from here.”

I was badly bullied at school and at home and no one did anything.  I hated that other people controlled my life.  I didn’t know I was queer yet, but in so many other ways, a lot of people were making sure I knew that the way I was was Not Okay.

I was supposed to believe that that was as good as it was ever going to get for me.  That was the best I should expect.  It would not get better.

And those were vicious, ugly lies.

No, it isn’t enough just to say it and not do anything to make it better now, but when the alternative to not even saying it is that a lot of kids are actively being told that it does not get better and no one is contradicting that message in any way?

If you have a choice between telling a kid who’s unhappy or having a hard time that it will get better, or that it won’t?  Tell them that it will.

Like, dear lord.

April 27, 2016

The right to not understand

Posted in Uncategorized tagged , , , , , at 3:21 pm by chavisory

As I’m finishing this post, it’s nearing the end of Autism Acceptance Month, and almost Blogging Against Disablism Day (which is officially May 1), and the more I thought about getting around to writing it, the more I thought that it kind of stands at the intersection of those two things… acceptance of autism and disability, and opposition to prejudice based on disability.

We talk a lot during Autism Acceptance Month about the rights of autistic and disabled people to education, to employment opportunities, to accommodation and acceptance in public spaces. We talk a lot about our capabilities, and about what we understand about our experiences.

But I think that there needs to be an understood right of people—particularly young people—to not understand. And to not have that impact their right to access and to information.

Here are some examples of how what I’m talking about plays out:

My most-shared post is one in which I ask parents to tell their autistic kids that they are autistic. And every time it goes around, a certain number of people respond, pretty predictably, “But what if he doesn’t understand?”

Or “He’s too young to understand.”

Or “She’s too much in her own little world to understand.”

Or “She doesn’t look like she even notices she’s different. She wouldn’t understand.”

Or when we weigh in on issues of language preferences or sexual orientation or gender identity among autistic people, people say “My child can’t dress himself; he would never even understand this debate.”  Or “Well, you’re fortunate to be able to understand your experience this way, but my child wouldn’t.”

(Side note: There’s a lot I still don’t understand about gender identity. That doesn’t make discussion of it unimportant or useless to me. That would still be true if I couldn’t speak or type or dress myself…which I couldn’t when I was the age those kids are now.)

Or we talk about the importance of learning-disabled kids having access to the same curriculum that their non-disabled classmates do, not only material judged to be on their own instructional level.

“But what if they don’t understand” the same books as their classmates are reading?

 

Well, so what if they don’t understand? How do you know if you don’t let them even try? Is it the end of the world if you give someone a chance to engage with the same material as their age-mates and they don’t understand?

They might not, but what if they did? What if they would, but you wouldn’t even give them a shot?

 

We have to be allowed to not necessarily understand perfectly, not understand everything, not understand right away, or to try and not understand at all, without being declared forever incapable of understanding, if we’re going to get a fair chance to understand. Those have to be acceptable possibilities.

We also might understand differently. We might understand something from an angle that you hadn’t considered. We might understand something later. It is actually pretty common that we understand something suddenly, but after it’s distilled for a long, long time.

That we have access to the information is important, the whole time, not only in the moment when we come to understand it. (Somebody tell me who here really understood, like, Huckleberry Finn, or A Wrinkle in Time, or To Kill a Mockingbird, the first time you read it? To say nothing of something like Hamlet? Here’s a great essay about how practically everyone has spent many decades misunderstanding a well-known poem.  Yet we don’t preemptively decide of non-disabled students that they will not understand this poem, so they should not read it, even though chances are that they will not understand it.  White people are famously having a hard time understanding Beyoncé’s “Formation.” In my elementary school, we were taught to sing “This Land Is Your Land” in kindergarten, “Erie Canal” in second or third grade. I guarantee you that we did not understand what those songs are really about when we were five or seven or eight years old. I saw Peter, Paul, and Mary perform when I was about that age, too, and I did not understand “Blowin’ in the Wind” or “We Shall Overcome.” Does that mean we should have been denied any knowledge of those works?)

And none of this means that it doesn’t matter if information is presented to someone in a form that they can understand whenever possible, whether that means in simplified language, with pictures, subtitles, or in whatever way increases its accessibility. It means that preemptive assumptions about what someone will or won’t understand aren’t a reason to not even present them with the information (or discussion, or work of art, or material that the rest of their class is learning).

How are we supposed to wrestle with information we’re not allowed access to? How are we supposed to ever understand if the fact that we don’t understand is reason enough to keep us from the tools of understanding? Like, do you see the trap?

It starts to look like you don’t, in fact, want us to understand.

Non-disabled people are presumed to be capable of learning from experience and becoming better informed over time. Part of that process is necessarily not understanding something at some point.

If the benchmark we have to meet to be given vital information about ourselves and our own lives is that there is no point at which we don’t or can’t understand it, that’s a game we can never win, because that’s not possible.

If whatever assumption somebody wants to make about whether we will or won’t understand is enough to deny us the information that would allow us to exercise more informed control over our own lives…how are we ever supposed to gain the rights to information, or to greater autonomy?

Just don’t be disabled?

 

And one major irony is that we write and write and write and write about the importance of knowing, of having language for our experiences, about what it means to be autistic, to be disabled, about the positives and the negatives, about the harm of compliance training, about the harm of indistinguishability as a therapy goal, about what acceptance does and doesn’t mean—and the majority of non-disabled parents and professionals persist in not understanding. Often sincerely. But often willfully. A lot of people just struggle with what we’re saying, but a lot of people keep intentionally twisting and misrepresenting what we say and hearing only what they’re determined to hear.

And no one says that for the crime of not understanding, you forfeit your right to new information, or to information presented differently, or to any access to information, about yourself or the world, or your right to keep trying to understand, or to take time to process unfamiliar concepts.

Why is that?

My high school math teacher would say to us periodically, “Kids are always asking me, ‘when am I ever gonna use this?’ And the answer is…probably never. But if you don’t know it, then you definitely won’t.”

If someone is given access to a discussion or a set of information, it’s true, they might not understand it. They also might not be able to express what they do or don’t understand. If they’re not given access at all, they definitely won’t.

April 13, 2016

Little birdhouse in your soul

Posted in City life, Uncategorized tagged , , , at 11:43 am by chavisory

FullSizeRender

In Tompkins Square Park.

March 18, 2016

The bathroom renovation unleashed the faeries.

Posted in City life, Schooling and unschooling, Uncategorized, Weird stuff tagged , at 2:02 am by chavisory

This is the only explanation I have for recent events.

So back in October…our landlords were finally forced to concede that our bathtub was about to fall through the floor and renovate the bathroom.

And while this resulted in a near-100% reduction in giant insect encounters in the apartment, an unforeseen but pleasant surprise, we are now forced to wonder if something…else hasn’t been released from the ancient walls of the building.

Back about six weeks ago, a friend of mine was going to be visiting from out of town, so I was cleaning up the apartment.  Nothing drastic…sweeping and dusting, taking trash out and putting away piles of clothes.

Shortly thereafter, I went looking for my incense burner one day, and it was nowhere.  And it’s only ever two places:  on my bedroom dresser, or on the kitchen table.  Those are the two places I use it.

Mystified, I mentally tried to retrace events:  the last time I knew I used it, the last time I knew I saw it…cleaning day.  I’d taken everything off my dresser to dust the top of it, then put it all back and then made my bed.  I couldn’t distinctly remember putting the incense burner back along with everything else.

I checked all the dresser drawers, in case I’d just knocked it into one while putting something else away.  I thought I might’ve left it on the bed and subsequently flung it somewhere when I changed the sheets.  I checked underneath and behind all relevant pieces of furniture.  I emptied my purse and backpack and computer bag.  Nowhere.

Both roommates denied borrowing it and forgetting to return it.  I wouldn’t have minded; I just wanted to know where it was.

I only half-jokingly accused my friend of swiping it just to see how long it would take me to notice it was gone.

We don’t have cats.

I didn’t care about the cost; it was only about an $8 incense burner.  Its value is sentimental; I got it on a summer break trip to San Francisco with my best friend in college (leading one roommate to suggest that if its value wasn’t its cost, I should just buy another one…which would guarantee the spontaneous return of the original, in the manner of TV remote controls lost in the sofa cushions).

I was just thinking about it again this morning, being mad about it, planning another deep excavation of all the dresser drawers–again, its only real value is the memory of when I got it–and consoling myself as I often do at the loss of various things with Rena Grushenka’s line from White Oleander, “You want remember.  So just remember.”

…When Emily #2 texted me at rehearsal to say she’d found my incense burner, but did I know where her incense was?

The box of incense was probably on my dresser in the aftermath of a bookshelf rearrangement, but where did she find the burner???

Inside our little kitchen sideboard where we keep the cookbooks, and oddly, lain straight across the top of one cookbook (of traditional Greek cooking).  There’s no way it got put there by accident.

I had looked in that thing.  Multiple times.  I had taken out cookbooks since then.  I could swear it was not in there.

…Until it was.

March 15, 2016

Love and duty of, and for, creative children

Posted in Uncategorized tagged , , , , at 2:01 pm by chavisory

I started reading this article (How to Raise a Creative Child. Step One: Back Off) wanting so badly to like what I think it’s trying to say, but just wound up so annoyed at many of the assumptions and implications the author makes in order to say it.

It’s true—you can’t program a child to become creative. You can’t engineer that kind of success. Love is a better teacher than a sense of duty.

But Grant is kind of just imposing this duty on a certain set of kids in a different way—implying strongly that the right outcome for those kids is to become a revolutionary or visionary leader in their fields. I don’t think that’s fair, either.

Grant also seems unfamiliar with some of the realities of being a gifted child. Whether someone suffers from social or emotional problems, or is kept from learning to be original by adult expectation or fear of failure, aren’t the only factors in whether or not they’ll grow up to change the world. There’s more to the equation than that, and not all of it is even wrong.

I’m going to go point by point:

  1. “They learn to read at age 2, play Bach at 4, breeze through calculus at 6, and speak foreign languages fluently by 8.”

This is not the trajectory that probably most genius follows, though. Particularly for twice-exceptional kids, probably including Einstein, who Grant keeps quoting approvingly. This describes a tiny number of child prodigies, and doesn’t include most people who grow up to be accomplished, creative adults…many of whom spoke or read late, have no particular musical or mathematical talent, or were simply unspectacular at school until they found their own groove later on.

Underscoring Grant’s ignorance here, he talks about giftedness, creativity, genius, and prodigy status almost interchangeably throughout the piece. But they’re not the same thing. Giftedness is widely accepted to entail a high capacity for creative problem-solving, but most gifted children are not prodigies. Prodigies are not necessarily geniuses, nor particularly creative, nor geniuses prodigies. Many impressively creative children are never identified as gifted, indeed are often perceived as academically lacking. All of those things can manifest very differently in different children under different circumstances (and historically, many of the ways in which they’ve been identified have been problematic, to say the least, on multiple levels).

And none of them equate to limitless capability. Any ability =/= every ability. This is a common misconception about academically gifted children in particular. The fact of our advanced abilities in one regard is misapplied to argue that we should be able to do anything else we really want to do (or someone else wants us to do).  This is especially obnoxious for twice-exceptional kids, who have to expend a lot of cognitive resources on navigating the world in ways that most people don’t. In some ways, those struggles can spur creative development. In some ways, though, they’re just draining.

Everything’s not just easy for a very talented child.

  1. “Their classmates shudder with envy; their parents rejoice at winning the lottery.”

They often don’t, though. Classmates often demean and ostracize precocious or conspicuously different kids. Their parents often misunderstand and undervalue their talents, struggle to relate to them, and fear not being able to meet their needs. Siblings and teachers resent them. Schools tacitly allow bullying and obstruct opportunities for acceleration. Kids with IEP’s are told they’re not eligible for honors or AP classes.

In a recent case in Canada, two brothers were both admitted to a prestigious arts high school. The boys’ home district didn’t blink at transferring the required funding for the younger brother, but refused to do so for the older brother, because his educational funding stream was disability-related.

How many brilliant kids does this happen to whose families simply don’t have the resources or social networks to fight back like the Wrays could?

Particularly gifted or creative kids just aren’t automatically given the supports they should have; they’re often being actively thwarted.

  1. “But to paraphrase T. S. Eliot, their careers tend to end not with a bang, but with a whimper.”

This is insulting. How are we defining a “whimper” for these purposes?  Why is the most concerning thing about a gifted child’s life the way their career ends, anyway?  Why do you get to declare the outcome of an artist’s career a “whimper” because they didn’t go as far as you wanted them to?

  1. “Consider the nation’s most prestigious award for scientifically gifted high school students, the Westinghouse Talent Search…From its inception in 1942 until 1994, the search recognized more than 2000 precocious teenagers as finalists. But just 1 percent ended up making the National Academy of Sciences, and just eight have won Nobel Prizes.”

Quite frankly, so what? What percentage of anybody makes the National Academy of Sciences? There is one Nobel Prize awarded per year in a tiny handful of fields. That leaves the vast majority of gifted researchers and creators doing necessary, valuable work who will never win a Nobel Prize. That’s not a meaningful benchmark of whether or not they fulfilled their potential as human beings or as scientists or artists.

“For every Lisa Randall who revolutionizes theoretical physics, there are many dozens who fall far short of their potential.”

Why is “revolutionizing theoretical physics” and “falling far short of [your] potential” a meaningful juxtaposition? Those two extremes don’t accurately represent the possibilities available.

Maybe the Westinghouse Search just isn’t a very good predictor of future paradigm-shifting achievement. How does he know that Talent Search finalists who don’t go on to revolutionize a field aren’t in fact fulfilling their potential, but just in ways that are harder to quantify? That don’t win the shiny awards? Maybe their potential just wasn’t what you thought it was.

And anyway, why is anyone particularly obligated to always pursue to the highest possible level the subject they were good at in high school? Does a gifted teenage scientist not have a right to give up something that they find is no longer in line with their own goals or desires?

  1. “The gifted learn to play magnificent Mozart melodies, but rarely compose their own original scores.”

I spend a lot of time trying to explain this in other contexts

Different skills are different skills.

Technical virtuosity is a worthy talent—it just isn’t the same thing as compositional originality. Maybe a technically masterful musician isn’t an innovative composer because they don’t work at it—or because they don’t work that way. Accepting that isn’t a sin. We need original composers, and we need highly skilled musicians to execute and interpret their work. One of those things is not morally superior. That it’s relatively rare for someone to be both is possibly not actually wrong.

We have a common language of music because most musicians aren’t going around reinventing the rules of music. That’s okay. (And meanwhile, a lot of young musicians not identified as especially gifted as toddlers are composing their own original works.)

  1. “They focus their energy on consuming existing scientific knowledge, not producing new insights.”

But you don’t usually produce new insights by focusing your energies on producing new insights, but rather on solving the really unglamorous, day to day, moment to moment problems, and seeing something differently.

I have to tell you here about my favorite piece of paperwork.

It’s a character/scene breakdown. It was the result of a spreadsheet tweak by an unpaid intern PA. It was the third in a series of attempts to satisfy a director who didn’t like either of my prior versions. And he didn’t like that one, either.

But it was simple and brilliant. I would never have come up with it; I have a tendency towards over-thinking. It eliminated an entire layer of translation from the problem. And it has persistently improved the quality of my work in every way, for every show, ever since. It saves time, it saves anxiety, and it saves scheduling mistakes, which saves money; it became almost every piece of organizational paperwork I use while stage managing a whole other multi-media project.

It’s just a rearranged Excel spreadsheet. That’s how unspectacular creative innovation can look. We weren’t sitting there focused on producing new insights; we were trying not to get snapped at by an unhappy director again. And we failed.

But small breakthroughs like this accrue, hourly, daily, in every creative field, into major shifts in thinking over time.

  1. “In adulthood, many prodigies become experts in their fields and leaders in their organizations. Yet ‘only a fraction of gifted children eventually become revolutionary adult creators,’ laments the psychologist Ellen Winner.”

…And what of the people who do become revolutionary adult creators who weren’t identified as particularly gifted in childhood? What of the disabled and outsider artists, some of whom are supported and represented by places like the Creative Growth Art Center, but some of whose work is never identified until after their deaths or ever at all, who spend the majority of their lives assumed to be categorically incapable by everyone around them?

Where’s the lament for that injustice, when we talk about lost creative promise?

A more interesting question might be, what fraction of revolutionary adult creators was overlooked or written off as untalented in childhood? Or told that they shouldn’t pursue what they did? How many Nobel Prize winners weren’t extremely impressive young children, and what does that tell you?

Again, it looks to me more like the frameworks we have for identifying conspicuous childhood ability just aren’t very good at predicting adult achievement.

  1. “Most prodigies never make that leap. They apply their extraordinary abilities by shining in their jobs without making waves.”

But why should “making waves” be a goal unto itself?

I have seen some of the worst efforts at advocacy or activism born from a desire to “make waves” without having a deep understanding of the topics involved. A lot of acquiring that deep understanding, in order to effect sustainable, lasting change in a field, can look like years and years of absorbing existing knowledge and doing unglamorous work without making waves just for the sake of making waves.

Novices absolutely can make important contributions and insights. They also can crash and burn, or do more harm than good, when they don’t know what in the fuck they’re doing or the history of what they’re trying to do. Context matters. Revolution isn’t always the greatest possible good.

And like, we need gifted surgeons. We need brilliant defense attorneys! To become one can take everything that even the most gifted student has to give. Someone who gives their very best to healing their patients or defending their clients isn’t under-performing because they don’t necessarily decide to make overhauling the system their own highest priority. The problems entrenched in the health care and criminal justice systems have thwarted many of the greatest minds that have taken them on for many years.

And again, there are professionals who actually do this kind of advocacy for systemic change. Just because most people don’t doesn’t mean that the people who should be doing it aren’t. But skill at neurosurgery and skill at lobbying or activism are not the same thing. Different skills are different skills. The fact that the health care and criminal justice systems still harbor massive waste and injustice is more evidence of those issues being very big and very entrenched than of isolated child geniuses not reaching their full creative potential.

I also imagine a lot of highly accomplished doctors and lawyers might take issue with the framing that really they could be doing so much more to reform the system if only their youthful sense of originality hadn’t been quashed. That’s a judgment of somebody else’s life that I’d be very wary of making without an intimate familiarity with what they do and why. Maybe they’re dodging their true potential. Maybe they’re making canny decisions about work/life balance. Maybe they’re actually doing the best they can.

*

There is room for both broad and narrow approaches to art, science, and social problems. Neither is more genuinely creative. The nature of the problem matters a lot.

Love is a better teacher than a sense of duty. So what is all this presumed duty of gifted kids to grow up to be as creative as you think we should be? To solve the problems you want us to solve for you? (If you know so much about what needs to be done, why don’t you go do it and stop foisting your existential disappointment on us?)

Maybe a precocious child’s actual true potential is not the same as your prejudice about their true potential, but that doesn’t make it actually inferior.

Parents shouldn’t drive their highly talented children like achievement robots not because it short-circuits the kind of creative development we really want from them, but because it’s objectifying and cruel.

I just don’t think the goal should be making sure more Westinghouse Talent Search finalists go on to win Nobel Prizes, as opposed to making sure that all children are more able to live their fullest, freest lives. I am so much more troubled by the thought of how many kids—whether formally identified as gifted or not, whether conspicuous musical or linguistic prodigies or not—have their promise and talents thwarted by poverty, by broken educational and criminal justice systems, by ableism and endemic racism, than I am by statistics about a relatively tiny number of prodigies who don’t do what some professor of management thinks they should be doing with their adult lives. And those problems are all of our responsibility to contribute to solving, not to put on the shoulders of singular children to fix for us.

We’re not entitled to the accomplishment of any child, and we squander the talents of too many others.

February 23, 2016

Overlooking

Posted in City life, Uncategorized tagged , , at 3:51 pm by chavisory

FullSizeRender

February 10, 2016

When did ‘The X-Files’ get this cool?

Posted in Uncategorized tagged , , , at 2:01 pm by chavisory

This is a screen capture of the top headlines from the New York Times Television section one day last month.

The_New_York_Times_-_Breaking_News__World_News___Multimedia

[Image description: Under the section heading “Television” on the New York Times online home page, featured headlines are “How Well Do You Know Your ‘X-Files’ Monsters?” “The X-Files Season 10 Premiere: A Crazier Mulder Than Usual,” and “A Word With: William B. Davis: The Cigarette Smoking Man of The X-Files Resurfaces.” Accompanying photograph is of actor Doug Hutchison as Eugene Victor Tooms, with glowing yellow eyes.]

It is a little bit hard to get words around my bafflement at this state of affairs. People are gushing with happiness all over my Facebook news feed. People who I never knew previously were huge X-Files fans. People who I don’t remember as being similarly obsessed when the show was last on the air.  (Some people who I just didn’t know yet, and I’m thankful that I do now, and not only for the purposes of squealing about The X-Files.)

Don’t get me wrong; I’m happy about this. That I can flail about The X-Files pretty visibly these days; everyone else is, too.  Maybe it just seems that way.

That somehow, between when I was 11, or 21, and now, it’s become perfectly acceptable, if not normal, to be openly obsessed with The X-Files.

It’s a weird thing to feel a little betrayed and befuddled over.

When I was a kid, when I was in college even, and got on about The X-Files, other people tended to get quiet and move away. People who had professed their mutual love of it just moments before. My adoration of this show was mostly something vaguely embarrassing, tolerated, indulged. Over the years I had a couple of friends who shared my interest to a limited extent…I was really excited when I met one other girl at camp who was into it, too. But we didn’t get close.  For a short span of time, I had the AOL message boards, but I was too young to have really great conversations there…and then AOL itself became more grief than it was worth, and I didn’t anymore.

A lot of teenagers would say they liked it, but then would shy away from actually talking about it. Were they saying they did just to make small talk? To placate me? Because that was the thing to do, when someone said they liked something, was to say you liked it, too, regardless of how clueless you actually were, because to admit you didn’t understand something that someone else did was the cardinal sin? (That would explain a lot, actually. Though I feel like I tried that a couple of times and it didn’t work out well.) Did they really, but it was too uncool to admit how much they did, especially to someone like me?

Was it the aliens?

My dedication remained no less steadfast over the years of the show, but it was something I got more and more embarrassed of, and in the later years of the show even fellow serious fans started dropping away. I know, I know, I missed Mulder, too. (If you watch some of those season 8-9 episodes now, they’re actually good—even I had no memory of some of them and was surprised at how good they were upon re-watch—but everyone was so disillusioned by Mulder’s departure that they just gave up.) But stuff just doesn’t let go of me that easily. And it became one of those loves that left me more and more alone over time instead of less.

I kind of just packed it away in my heart after the end of the show. I had a load-in the night of the series finale, which I made peace with videotaping for later. It was time to move on. The second movie got uniformly bad reviews; I continue to maintain its release was mishandled.  But I didn’t even get to go with anyone to the theater to see it.

A decade later I got onto Tumblr and was stunned to find a trove of loving, thoughtful, incisive commentary on the show, by people who were too young to have even watched it in its original run.

And now we’re at this point.

What happened? What changed?

Granted, for one thing, I have more neurodivergent female friends now. Dana Scully turns out to have been a cultural touchstone for a lot of girls who felt chronically weird and out of place. But that isn’t all; a lot of it isn’t coming from those people.

Did pervasive mistrust of the government come to seem less silly and paranoid in the post-9/11 Bush years?

Did everyone just get sick and tired of the culture that required we be aloof, indifferent, and uncaring?…of constantly swallowing their enthusiasm and sincerity and hiding what they loved?

(Even when I was too young to really get a lot of what the show was about, I think that may’ve been a huge factor in what attracted me to it. Mulder and Scully just cared so damn much, when all the grownups in my life always seemed to be telling me to care less.

Care less about the environment. Care less that school was an unfair, mean, and stupid waste of my time. Care less about being home by 8:00 on Friday night.)

It’s really great. It’s more than a little incredible to me. It feels in a way kind of like I just stumbled into the world the way it always should’ve been.

But I also can’t help but wonder, where was all this when I was 12, when it could’ve meant everything?

February 4, 2016

Little Lighthouse

Posted in City life, Uncategorized tagged , , at 10:49 am by chavisory

little lighthouse

January 20, 2016

When it is who we are

Posted in Uncategorized tagged , , , at 12:25 am by chavisory

There’s a group of assertions that have become common, among a fraction of parents who, superficially at least, believe themselves to be taking an accepting approach towards their child’s autism or disability.

They’re not necessarily looking for a cure. They’re not subjecting their kids to 40 hours per week of repressive therapy. They’re not bemoaning their grief for the non-autistic child they lost or the tragedy that their family’s life has become.

They’re just really insistent that autism not be allowed to be meaningful to who their child is.

“But it’s not who he is. It’s just something he happens to have.”

“It’s just part of who he is; it’s not all of who he is.”

“It’s part of her but it doesn’t define her.”

“Autism isn’t him, it’s something that happened to him.”

Lately it comes to dominate discussions that aren’t even about person-first vs. identity-first language choices, so fearful is the notion that autism might have any sway in who a child is.

And in some ways, I am more frustrated with this variety of denialism than with the way more openly hateful outlooks of curebie parents. In some ways, I think the parents who far more openly hate their children being autistic are being more honest, as deeply unfortunate as I find their position, than the ones hiding fear and disgust behind “There’s nothing wrong with my child as a person; this is only a thing that they have. It’s not really part of them.”

“It’s not who they are.”

Because that would be the worst thing.

What if it is, though?

What if they can’t meet your demands that they cut themselves off from that much of their psyches? What if they can’t or won’t hack themselves up that way?

As long as it’s not actually who you are, isn’t actually de-stigmatizing.

Just as long as you can let us believe that this isn’t really part of you is not actually acceptance.

Just as long as it doesn’t have real consequences for how you have to live your life.
Just as long as it doesn’t affect you in any significant, unavoidable way.
Just as long as it doesn’t mean anything to you, let alone anything good.

Just as long as it’s fundamentally separate from you.

If it kind of sounds like “Love the sinner, hate the sin,” that’s because it kind of feels like it, too.

Being forced to hold something true and essential about you at arm’s length for years and years, being told that you’re not really the person you are, that the real you, the correct you, is someone who doesn’t move through the world the way that you do…that you are not really like this, it’s just something that you have….

(Let me tell you something about trying to do this. The horrible part isn’t that it can’t work; it’s that it can, for some amount of time, anyway. The result isn’t a person who isn’t autistic, it’s a person who feels like a stranger or a ghost in their own life.)

As long as your whole experience of the world—the way language and emotion, music and light, passion and movement, space and time work—isn’t really innately woven into who you are…

It’s a variant, not a repudiation, of who you are is not acceptable. You’re only a person if you aren’t like this.

“But it’s not who he is.”

How would you know? (How good were your parents at reading your mind, at knowing how you truly and deeply felt about yourself as a child? How right were your parents about who you’d grow up to be? How psychic about these things are parents, generally speaking?) Would she tell you? Would she have the words to? What expectation have you given her about how you’ll react if she comes to you and says “Yes, it really is?” Have you exposed him to the diversity of first-person viewpoints that would allow him to know one way or the other? Is he allowed access to autistic people who describe their own experiences in various ways? Different autistic people do have different conceptions of what autism is to them. Most say that it is part of who we are, but some don’t; the point is that we all, individually, have the right to make those judgments about our experiences and internal lives and descriptive preferences. Do your children not have the same right to conceive of who they are or aren’t for themselves?

What if it actually is? What are you going to do then?

January 11, 2016

Hawk

Posted in City life, Uncategorized tagged , , at 2:05 am by chavisory

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