A brief illustration of privilege

I am often not a big fan of the language of privilege.  While I have found it a useful concept and thinking tool, and one that I tend to think people should take the time to understand…I’ve seen it turn already highly-charged discussions rancorous.  Particularly when both “sides” in a discussion are in fact vulnerable in some way.  The word has such a negatively loaded connotation in its everyday usage that it can turn unproductive quickly when participants aren’t familiar with its meaning in a social justice context, or legitimately feel vulnerable, overtaxed, or externally threatened…only to be told that they may in fact be privileged.  I try to stay away from it.  I usually think that there are better ways to explain things that don’t send people straight into self-defensive mode.

So I was mildly surprised, and humbled, last week when a college friend on Facebook thanked me for alerting her to her own state of privilege, in response to a link I’d posted about a recent event, in the sense of privilege being a circumstance in which you never even had to think about how an issue affects you.

You may have heard about this:  Somebody noticed and blogged about the fact that if you Google-searched “autistic people should,” or “autistic people are,” the autocomplete search suggestions–generated automatically by the most searched phrases completing that sentence–were all hate speech:

In response to the attention from bloggers who organized a flashblog to counteract those results, Google announced that it would revise its search algorithms to more effectively screen out death threats from the top suggested search terms.  (My contribution was here.)

There’s been a lot of discussion of privilege in the interactions between autistic bloggers and autism parent bloggers lately, which I’ve mostly stayed out of (and characterizations of war between the two groups, with which I mostly don’t agree).

But on a whim, I tried something.  Try it for me now if you want.

Go back to the Google home page.

Type in “parents of autistic children should,” “parents of children with autism should,” “parents of children diagnosed with autism should,” or “parents of autistic children are,” and don’t hit enter.  Let autocomplete do its job.

And see what the suggestion for that query is.

Here’s what I got:

(Search results read “things parents of autistic children should know“)

(Search results read “parents of autistic children are often aloof themselves“)

That is the magnitude of the difference between the assumptions that society makes about you, and the assumptions that society makes about us.  That’s privilege.

You may feel like autistic people, or other people who don’t know what’s like to parent an autistic child, judge you too harshly or unfairly, make ridiculous accusations, or hold you to impossible double standards.  There are times when you may be probably are right.  That there is a privilege differential does not mean that you can’t be hurt or bullied or wronged on an individual basis by someone of a less privileged group.

But society at large doesn’t wish you would just go away and die.  Major charities and research organizations don’t actively seek ways to make that happen.  There isn’t a federal law entitled the Combating Autism Parents Act.

(There is a federal law called the Combating Autism Act.  Think about what that really means if autism is an inextricable part of your psyche.)

Privilege is not about parents vs. autistics.  It is not about which group of us has had it harder, or that we could somehow count, add up, and compare the number of strikes against us.  It is not about how we feel about you or you feel about us or whatever personal wrongs or misunderstandings we might have done each other.

Privilege is about how the world at large sees you, and how the world at large sees us–and people like your kids–and the consequences of those conditions in who gets listened to and how.  And people–including parents of autistic people–are way, way more likely to get listened to seriously when they say that the world would be better off if people like us didn’t exist any longer, than when they say that we are acceptable, that we are not a tragedy, that the value of our lives is not best measured in terms of our financial burden on the country…or when parents like you say that you love your kids the way they are and only want their happiness and acceptance.

Privilege is the poisoned water that we’re all swimming in; it’s not about laying blame for who did the poisoning.  We all get wet; none of us can help but be affected in our views and the way we live our lives and interact with others…that doesn’t make it the fault of the people who aren’t the targets of the poisoning.  But we can all help unpoison the water.

Religion is not the problem

So there’s more than one way in which I’m sick of being told that the way I think and experience the world is a blight on humanity that needs to be wiped off the face of the earth.

Recently I had a heated Facebook discussion with a friend over this Times Room for Debate entry, which not only argues that religion is not a reliable source of morality, but also posits that atheism shouldn’t seek to replace religion, but to end it…unfortunately employing a host of unfounded generalizations and leaps of illogic.

In the interest of both critical thinking and compassion, can we look at what, practically and humanly, ending religion would mean?

Various cultures and government regimes, at various times, have tried, hard, to get rid of religion or specific religions.  I do not know of an instance in which it has gone well, in which the attempt didn’t involve egregious violence and human rights abuses, or in which the culture in question was left ultimately better off.  Or in which it even remotely worked.

Beyond whatever personal spiritual significance or comfort they hold to individual believers, religious thought and traditions are the cornerstones of more than a few minority cultures and communities.  Who is anyone to say that these cultures have no value, to put oneself in a position of choosing which other people’s communities, community rituals, values, and devotions, should be suppressed and eliminated?  If we’re talking about the distinction between religion and morality, what is the morality of depriving a minority population of its rights of self-definition and community traditions and values?

Has anyone really thought about how we would prevent people or communities from transmitting their belief systems to their children?  If you knock down every church building, how are you going to keep people from teaching their children to pray alone in bed at night?  How are you going to prevent me from hearing God in the wind in the trees or in the silences between raindrops?  How are you going to prevent people from infusing art and literature with religious thought?

And before somebody answers that the solution to ending religious belief is just to teach people better facts, understand this:  Religions are not arbitrary sets of false, irrational, or mistaken beliefs, or collections of simple superstitions of cause and effect or magical thinking or carrot/stick promises of punishment or reward for belief or behavior (though they can contain all of those things), which could simply be undone by giving people better information.  (That thunder is the result of colliding warm and cool air masses and not the gods having wrestling matches, for instance.  I know what causes thunder.  That knowledge has never yet prevented the experience of it from being spiritual to me.)  They are complex narrative frameworks of symbol, metaphor, and allegory.  They are stories and vocabularies for a class of experiences that you can’t simply forbid people from having.  You can’t keep someone from having an experience by denying them the language for representing or coping with it.

And so unless you’re going to all-out eliminate storytelling, you’re not going to keep people who are so inclined from finding personal significance and guidance in storytelling, or from using a certain type of story–myth, fable, fairytale, whatever you want to call it–to give shape and understandability to their experiences.

It’s not fair or intellectually honest to presuppose that those experiences are false or trivial just because you don’t share them.  And frankly narcissistic to declare that, because you don’t understand or share it, that mode of perception needs to be eliminated from the realm of human experience and meaning.

There is bad religion, just as there is bad music and bad writing, but we don’t talk about doing away with those forms of thought and expression just because a lot of it is of poor quality.  There is religion that advances truly terrible values; that doesn’t make religion inherently destructive or wrong any more than Twilight‘s existence makes all teen fantasy literature poorly written and abusive relationship-glorifying.  It is a medium, not an end, not an ultimate good or evil in itself.

In the same way that the overwhelming (and baffling) success of Twilight tells us nothing about teen fantasy literature’s inherent quality or worth (the genre also includes the Wrinkle in Time quartet, His Dark Materials, and the Earthsea cycle), the popularity of anti-intellectual or violent fundamentalism tells us nothing about what religion inherently is or has to be.  It is one manifestation.

Religion is not morality, we should do a better job of talking about what both of those things are and are not, and I fully agree that religion can’t be said to be the exclusive or superior source of morality.  But that doesn’t make it either worthless, or worthy of eradication.

Sea and clouds

Call me crazy, but I love beaches in winter.  This is Centerport Harbor, in Centerport, New York, where a friend and I took a long walk yesterday and watched some fascinating clouds roll in.

(If any of my geeky followers know the name of this specific cloud formation, I’d be interested; Google Image yielded no clear matches.)

Thinking and language

A friend sent me a link to this Radiolab episode (“Voices in Your Head”) from a couple years ago in response to a different inquiry altogether (having to do with certain experiences of schizophrenia and auditory hallucinations), but it was startling to me in an unexpected way.

http://www.radiolab.org/blogs/radiolab-blog/2010/sep/07/voices-in-your-head/

Jad is talking to developmental psychologist Charles Fernyhough about how he believes children learn to think by internalizing external verbal processes:

CF: I don’t think very young children do think.

JE: Like, think, period?

CF: I don’t think they think in the way that I want to call thinking.

JE: What he meant, is that thinking as he defines it, is just words sounding silently in your head, and before you have those words in your head, you can’t think.

Early in the episode, Fernyhough asks us to think of a parent and child solving a jigsaw puzzle together, and the back and forth dialogue between them in which, he posits, a child learns to think.  The “thinking” here, he says, is happening in the interaction between parent and child, and not internal to one or the other at all.  It’s by learning to make this verbal process internal, that we become thinking people, he says.  “If you watch any kid with their parents, anywhere in the world, doing this kind of thing, you’ll see them thinking together,” he tells us.

Immediately I thought, “How insulting to non-speaking or non-verbal people,” or even to people whose primary intelligence is not linguistic, but spatial, movement-oriented, artistic, or musical?

But then I was even more stunned.  Wait, I thought…Is this possibly why so many people cannot imagine that someone who doesn’t talk doesn’t truly think?  Why people are so highly skeptical of the genuine intelligence of someone who can type but not speak?  Because most people do, in fact, learn to think by speaking and can imagine no other way?

I never did engage in the kind of mutual narration described, or individual narration about what I was learning to do; being forced to engage in that kind of communication while trying to understand or carry out a task actually badly impedes my ability to do it.  I have the damnedest time getting people to understand that I’ll be better off if they show me something once or twice and then leave me alone to get comfortable with it, rather than hanging over my shoulder and re-explaining and correcting until I’ve got it perfectly, which will never happen under those circumstances.  It’s also one of the major reasons why I did so badly in cognitive-behavioral therapy:  Because having to speak severely impedes my ability to think.  I speak by translating and selectively externalizing my internal understanding; I don’t think by internalizing what’s external.

Even my memories of learning to write are hardly verbal at all; they’re very experiential, visual, and physical.  I remember the pattern of it becoming intuitive more than the words themselves.

Frequently in my line of work, I find myself defending the intelligence of dancers to other people, explaining that you just can’t expect them to be able to communicate much of their intelligence verbally.  It’s just not how they work best.  It’s not the framework in which they’re approaching the world.

But look at their intuitive grasp of physics, space, movement, group dynamics, and the capabilities of the human body.  That is just as much intelligence as anything you can measure on a standardized test, and it never stops being astonishing to me.

Or, in college I knew an art student who reported that when she’d been painting alone for a long time, she had a really hard time switching back over into speech…like if her roommate came home unexpectedly and said hello.  I have a really hard time buying that in those preceding hours, she wasn’t thinking at all just because she wasn’t doing it in words, but in color, shape, and movement.

It’s incredibly arrogant, too, the presumption that because this is how you, or even most people, learn to think about the world, that that is how it must be done, and if it wasn’t, then those people aren’t really thinking at all…that thought itself cannot occur in a frame of reference radically different from the one that most people take for granted.  Or that nothing of significance could be understood if it can’t easily be translated to speech or verbal language.  And that’s not even taking into account all the conditions by which someone may in fact have a very verbal understanding of the world, but not be able to physically speak for whatever reason (like oral motor apraxia).  The prejudice is to assume that they cannot think or understand, rather than to look for ways that they could make their understanding known.

What I’m starting to think is that it’s not the autistic who have a theory of mind problem.

I’m at my favorite coffee shop again, like I usually am on days when I don’t have to be at work till evening.  Patrons are actually sitting outside this morning, because it’s sunny, calm, and 45 degrees instead of 10.  A woman smoking at the table nearest the door pushes her last fragment of baklava—shimmering with honey—to the edge of the table for the sparrows to share, and as one alights on the edge of the table to seize it, the sun for just a moment shines through its widespread wings, turning both bird and pastry a translucent luminous gold…like the bird was solidified from light itself.

And though I write poetry, there are no words I can find sufficient for the sight…not really.  Even the above paragraph feels and sounds klutzy and contrived compared to what it actually looked and felt like.

If I had even fewer words than this to describe it to you, would that mean that I didn’t truly see or feel or understand that moment?  I don’t think so.

Danny Zuko, poetry fan

Speaking of characters who everyone gets wrong…

It’s always made me a little sad how few people appreciate that Danny Zuko is a great big poetry nerd.  Specifically, that he’s a huge fan of e.e. cummings…but that, for instance (as far as we know), his English teacher never seemed to notice this, or harness it into keeping him more engaged with his academics.

Don’t believe me?

she being Brand

-new;and you
know consequently a
little stiff i was
careful of her and(having

thoroughly oiled the universal
joint tested my gas felt of
her radiator made sure her springs were O.

K.)i went right to it flooded-the-carburetor cranked her

up,slipped the
clutch(and then somehow got into reverse she
kicked what
the hell)next
minute i was back in neutral tried and

again slo-wly;bare,ly nudg. ing(my

lev-er Right-
oh and her gears being in
A 1 shape passed
from low through
second-in-to-high like
greasedlightning)just as we turned the corner of Divinity

avenue i touched the accelerator and give

her the juice,good

(it

was the first ride and believe i we was
happy to see how nice she acted right up to
the last minute coming back down by the Public
Gardens i slammed on

the
internalexpanding
&
externalcontracting
brakes Bothatonce and

brought allofher tremB
-ling
to a:dead.

stand-
;Still)

–e.e. cummings

Blue sky for a new year

Getting the hang of my new camera!  This is one of my favorite views in the whole city…the bell tower of the Riverside Church in Morningside Heights, as seen from the Great Hill in Central Park.

What everyone gets wrong about Susan

The Chronicles of Narnia have been some of the most formative books in my life, a situation in which I know I’m not alone.  I got my set as a Christmas present from my grandparents when I was 11 or 12.

There’s a common criticism of them, however, out of many quite reasonable ones, that’s irritated me for a long time.

He may not have been the first to think it or to say it, but author Philip Pullman’s articulation of what he finds wrong with the books, encapsulated in the problem of what happened to Susan Pevensie and why, when she does not return to aid Narnia in the final book of the series, may be most responsible for a now widespread interpretation that Susan is cast out of Heaven because she grew up and embraced her sexuality.  Indeed, I think I have hardly ever had a conversation about these books since college in which “The Problem of Susan” didn’t feature prominently in their criticism:

Susan isn’t allowed into the stable and the reason given is that she’s growing up. She’s become far too interested in lipstick, nylons and invitations. One character says rather primly: ‘She always was a jolly sight too keen on being grown up.’ This seems to me on the part of Lewis to reveal very weird unconscious feelings about sexuality. Here’s a child whose body is changing and who’s naturally responding as everyone has ever done since the history of the world to the changes that are taking place in one’s body and one’s feelings. She’s doing what everyone has to do in order to grow up.

And it is a god who hates life because he denies children life. In the final Narnia book he gives the children the end-of-term treat of being killed in a railway accident so they can go to heaven. It’s a filthy thing to do. Susan is shut out from salvation because she is doing what every other child who has ever been born has done – she is beginning to sense the developing changes in her body and its effect on the opposite sex.

It’s tempting and convenient, because it echoes charges so commonly made against Christianity as a whole–that it’s intrinsically set up to punish natural human sexuality, among other things like critical thinking and self-determination.

It’s too bad that Pullman’s interpretation is practically unsupported by the text.  You’d have to take the passage in question completely out of context of the entire rest of the series for it to be even remotely plausible; indeed, even by quoting it incompletely, he leads his listeners in a nearly complete distortion of the reasoning behind Susan’s exile.

Here is the incident, from The Last Battle, which Pullman cites:

“Sir,” said Tirian, when he had greeted all these.  “If I have read the chronicles aright, there should be another.  Has not your Majesty two sisters?  Where is Queen Susan?”

“My sister Susan,” answered Peter shortly and gravely, “is no longer a friend of Narnia.”

“Yes,” said Eustace, “and whenever you’ve tried to get her to come and talk about Narnia or do anything about Narnia, she says ‘What wonderful memories you have!  Fancy your still thinking about all those funny games we used to play when we were children.’”

“Oh Susan!” said Jill, “she’s interested in nothing now-a-days except nylons and lipstick and invitations.  She always was a jolly sight too keen on being grown-up.”

“Grown-up, indeed,” said the Lady Polly.  “I wish she would grow up.  She wasted all her school time wanting to be the age she is now, and she’ll waste all the rest of her life trying to stay that age.  Her whole idea is to race on to the silliest time of one’s life as quick as she can and then stop there as long as she can.”

Susan is not just doing what she needs to do to grow up.  The reason given is not that she’s growing up; the text itself refutes this.  Lady Polly, the speaker after Lucy’s now-infamous line, denies that growing up is what Susan is doing at all.

She is pretending that her previous experiences in Narnia never happened.  She denies the people she knew there, who she loved and who loved her, people who died for her and what they meant to her, what she’s been through and everything she’s done up to this point.  She calls all of it a childish game.

Nor is there any defiance of the will of Aslan here, who has never in this entire story forced any of these people into any task or burden or mortal danger against their own free will.  Who has in fact, repeatedly, stood by and let them actively make bad choices.  She doesn’t hear an order from Aslan and say “no,” “I don’t want to,” “not this time,” or “fuck you, I’m not a plaything.”  She denies that she ever knew him.

Some other points of Narnian history further illuminate the absurdity of Pullman’s claims:

1. That time in Prince Caspian when Bacchus showed up for a romp…

The crowd and dance round Aslan (for it had become a dance once more) grew so thick and rapid that Lucy was confused.  She never saw where certain other people came from who were soon capering about among the trees.  One was a youth, dressed only in a fawn-skin, with vine-leaves wreathed in his curly hair.  His face would have been almost too pretty for a boy’s, if it had not looked so extremely wild.  You felt, as Edmund said when he saw him a few days later, “There’s a chap who might do anything–absolutely anything.”  He seemed to have a great many names–Bromios, Bassareus, and the Ram, were three of them.  There were a lot of girls with him, as wild as he….

“Is it a Romp, Aslan?” cried the youth.  And apparently it was.

And it’s a delightfully saucy good time, for a god who supposedly hates life and is into damning children for sensual exploration.

2.  Susan herself, in The Horse and His Boy, is described as having multiple suitors.  She’s being courted for marriage by Prince Rabadash of Calormen…

“Now, Madam,” the King was saying to Queen Susan (the lady who had kissed Shasta).  “What think you?  We have been in this city fully three weeks.  Have you yet settled in your mind whether you will marry this dark-faced lover of yours, this Prince Rabadash, or no?”

…but she’s awfully sweet on Corin, Prince of Archenland (though here she’s mistaken a runaway slave named Shasta for the prince)…

But he had no time to think of that before the most beautiful lady he had ever seen rose from her place and threw her arms around him and kissed him, saying:

“Oh Corin, Corin, how could you?  And thou and I such close friends ever since thy mother died.  And what should I have said to thy royal father if I came home without thee?  Would have been a cause almost of war between Archenland and Narnia which are friends time out of mind.  It was naught, playmate, very naught of thee to use us so.”

There is no condemnation whatsoever stated or implied for her romantic activities.

3. Lasaraleen

A minor character who also occurs in The Horse and His Boy, Lasaraleen is a childhood friend of Aravis, and perhaps unexpectedly, one of my favorite characters in the series.  She’s a party girl, socialite, and trophy wife…and perhaps the most totally and unabashedly herself of anyone in this world.  She loves luxury, being seen, and having a good time.

[Aravis] remembered now that Lasaraleen had always been like that, interested in clothes and parties and gossip.  Aravis had always been more interested in bows and arrows and horses and dogs and swimming.  You will guess that each thought the other silly.

We’re supposed to see Lasaraleen as doofy and shallow, but she’s also affectionate and loyal.  She helps her friend escape from being caught and returned to an arranged marriage at serious risk to herself, and no further particularly harsh criticism is made of her life choices.

4.  Other adults have come and returned to Narnia before.

-King Frank and Queen Helen

Former London cabbie Frank and washerwoman Nellie become Narnia’s first king and queen in The Magician’s Nephew.  They are already adults when brought to Narnia (albeit accidentally in Frank’s case).  Aslan treats them with trust and respect and is clearly not expecting chastity, but children and grandchildren from them.

“Rise up King and Queen of Narnia, father and mother of many kings that shall be in Narnia and the Isles and Archenland.”

-Digory Kirk and Polly Plummer

The first human children to stumble into Narnia, they return as adults (probably in their 60′s or 70′s) with the others for the Last Battle.  Peter and Edmund, wearing beards at their reappearance, are also young adult men by this point.  Presumably they’ve all done what they had to do to grow up, and it didn’t include betraying the memory of everyone they’ve ever loved.

Nothing in the world of this story indicates that any of the other protagonists who have grown up either in Narnia or out of it, did not go through “naturally responding as everyone has ever done since the history of the world to the changes that are taking place in one’s body and one’s feelings.”  Nothing.  Because, as Pullman correctly observes, these feelings and explorations are fairly universal.

The gravity of Susan’s sin is not in her embrace of superficial frippery, or in any normal adolescent desire on her part for adulthood, sexual experimentation, maturity, or self-determination.  It’s her betrayal of her true self.  It’s her denial of her own emotional history and experience, and what a lot of other people went through by her side.

And even for that, nobody bars the doors of the Stable to Susan as she begs to go through to eternal life.  She is not in Narnia, because she, for her own reasons, chose not to get on the train whose demise brought her siblings and former mentors back to Narnia for the Last Battle.  Susan may have saved her (earthly) life by not getting on that train, but at the ultimate cost of her own authenticity.

Ability to return to your true home requires acceptance of who you really are.  That’s not something that Aslan, or the Emperor Over the Sea, or all the forces of Deeper Magic are capable of doing for her.

Baking day

I last baked bread for myself sometime in elementary or middle school…about 20 years ago, unbelievably.  (The church I grew up in used to be small enough that we always had homemade bread for communion, which I made once, and also once or twice for school projects.)  But somehow I’ve kept finding myself badly craving the feeling of kneading bread dough, or the need to make something incredibly intense with my hands, the past couple weeks.  So with an unexpected whole day off today, I made some bread.

It felt as incredibly good as I’d been missing.  I’d also forgotten how much I love the smell of the yeast in rising dough.

I made some thyme butter to go with it.  The second loaf is going to make incredible French toast next week.

I fear I could get addicted to this.

Out of Order

I’m very excitedly looking forward to the release of this documentary:

From the project website:

Most gay and transgender people know what it feels like to be told they are broken and to be rejected, and often this message comes from Christians. Out of Order is a feature length documentary following the journey of three queer members of the Presbyterian Church (USA).

With unprecedented access, this groundbreaking documentary joins a group of queer future ministers at a secret retreat in the South. The critical decisions they make there will forever alter the course of their lives.

Because I remember

Two major considerations of autism and the place of autistic people in society sort of collided in the news media this past week.  First, the New York Times’ Sunday Magazine ran a long piece, “The Autism Advantage,” on a European company, Specialisterne, whose mission is to find supportive employment opportunities for people with Asperger’s Syndrome in the tech world.  And second, the House of Representatives held the first hearings in a decade on rising diagnostic rates of autism spectrum disorders.

In both forums, it quickly became apparent, as it often does, that by having any ability to take an active role in our own lives or discussions about us, our right to do so is discounted by many.  The comments section of the Times article quickly exploded with criticism that because some autistic people are too severely affected to ever hold jobs, the article was irresponsible or trivializing, that the employment concerns of the so-called “high-functioning” had no place in discussions about real autism.

And the originally slated panel of witnesses to Congress included zero autistic people of any stripe.  When Michael John Carley and Ari Ne’eman were added in response to pleas from the advocacy community, complaints resulted that two such “high-functioning” men couldn’t truly represent autistic people, or did so inadequately because their testimony didn’t focus on the need for a cure for “lower-functioning” people.

Effectively, that because some autistic people have severely compromised communication abilities, we should not have been represented, in a Congressional hearing about the federal response to our existence, at all.

And I’ve lost count of the number of times in online discussions when I’ve been told that I’m nothing like someone else’s child, couldn’t possibly understand what their child goes through or have any idea what it’s like to be their child…before they list off a litany of experiences that sound a whole lot like my own childhood.

(Or sometimes not.  Sometimes someone else’s experience with the autism spectrum is actually radically different from mine.  It’s called a spectrum condition for a reason, and we know this, better than anyone.)

I may never be able to convince these people that my experience has anything in common with their children’s.  I know that no single human being can ever truly know the experience of being another, but I also can’t convince myself that I have no place standing up for those kids.

Because I remember getting the message so often, in so many ways, that there was no place for me in the world as I was, that I was never going to make it in “the real world.”  That I wasn’t going to be allowed to make it if I wasn’t going to do a better job of pleasing others.

I remember not being able to look the way I was supposed to, talk the way I was supposed to, dress the way I was supposed to.  I remember not being what anyone wanted.

Because my heart broke for your kids when Michael John Carley asked the nation to remember, when we talk about the autistic, that the vast majority of us can hear and understand what you say about us—and a gallery full of people behind him angrily shook your heads “no.”  Because I remember being told again and again that I could not be perceiving what I was perceiving, and being told that I couldn’t or shouldn’t be able to do what I knew I could.

Because I remember having no one who spoke or understood my language, and losing hope that I ever would.  I remember having no one who thought that the world as I experienced it was worth respecting or understanding remotely enough to be any help to me.

Because I remember the constant implication that the ways I was being treated were acceptable because the way I am was not acceptable.

These things wear you down, day after day.  The memory of it all wears on me still.  I want better than that for your kids.  I think we can all do better than that for your kids.  I’ve cited before, and probably will again, the quote from Adrienne Rich:

When someone with the authority of a teacher, say, describes the world and you are not in it, there is a moment of psychic disequilibrium, as if you looked into a mirror and saw nothing.

I think that all of your children deserve to see a world with them in it, and belonging in it.

And far from our abilities disqualifying us from that role, I believe that our communication abilities and everything that we’ve done and learned for ourselves are all the more reason why we have a responsibility to stand up for kids like yours.  If I were to decide that because of the gap in our apparent abilities, that they and I have nothing whatsoever to do with each other….If I said “You’re right; because I can speak and write and have a job, and your child might not ever, then his rights, dignity, and well-being have nothing to do with me,” then I really would be guilty of the accusation leveled against activists so often–that we care nothing about the well-being of the more severely disabled.

But I don’t think that’s true.