Saturday, May 20, 2006

Between Pity and Piety

The thirteen-minute documentary Autism Every Day that premiered at an Autism Speaks fundraising event has stirred up considerable controversy in the autism community, highlighting the fragility of some of the alliances that we have built to sustain ourselves and our families.

As I've read some of the commentaries, I've been doing what I frequently coach Sweet M on:

Breathe in . . . 1 . . . 2 . . . 3 . . . 4 . . . .

Breathe out . . . 1 . . . 2 . . . 3 . . . 4 . . .

I liked the film. Yes, as has been pointed out, it probably ought to be called Autism Moms Speak. And yes, it's a portrayal of the challenges that face autism families with little if anything describing the unique satisfactions that come from parenting a child in the spectrum, no doubt with the goal of evoking pity and donor dollars. And yes, it is heartbreaking — and not a little disturbing — to hear a mother describe her suicidal-homicidal ideation within earshot of the autistic child whom she identifies as the source of her despair.

And still, I liked the film.

Some people have described Autism Every Day as a pity party, where the mothers who are profiled (and by extension, their families) are set up as objects of pity in an attempt to drum up donor dollars, much the way that maudlin Save the Children commercials on late night television attempt to tug at our heart and purse strings. And that's probably true, too.

And still, I like the film.

I liked hearing about the challenges that other autism moms face. And while I've never contemplated driving off the George Washington Bridge — as one of the moms in Autism Every Day reveals — that is probably only because I don't have a car. I have felt that despair — especially, but not only — in the days before I knew there was something called an autism community.

During the Chinese cultural revolution such revelations were called "speaking bitterness." And in the women's movement, it was called consciousness raising. The goal is to build awareness, understanding, and solidarity. Autism parents, and autistic people, and autistic parents each have their anguish — and triumphs — to share.

At one point I was interested in thinking about autism parenting as an extreme sport — extreme parenting. When I heard Susan Senator read from her book Making Peace with Autism, she mentioned that the earlier title of the book included something about Extreme Parenting. But her publisher wanted a more upbeat title, and Susan described how she and her husband joked about acquiescing to the publisher's request, and then making peace with the title Making Peace with Autism. Publishers, like Hollywood film studios, are often in the business of manufacturing happy endings.

We live in a culture that requires a kind of instantaneous transformation: lemons are to be churned into lemonade even before we taste the sourness that life can sometimes provide. The writer Michael Ventura suggests that this is part and parcel of a consumer culture that needs to render everything appealing and uniform. I'm as guilty as the next, dubbing my own little autist Sweet M, when she is, often as not, sweet and sour.

Do we want to have our representations of ourselves, and our lives, and our children be subjected to some representational straitjacket issued by the Department of Silver Linings, where every image is tested for its sunny-ness factor?

Of course this is not a new debate. It goes on in nearly all struggles for social and economic justice — the debate over positive images. Do we want to insist on positive images — role models — in the interest of counteracting the stereotypical representations of oppressed groups? Or do we want to encourage complex, multidimensional depictions of our experiences, and of the experiences of our children? I guess you know where I'd stand on that.

Parenting kids on or near the spectrum requires walking a fine line between pity and piety, two words with the same root. With pity, one looks down. And with piety, one looks up. No one likes to be the object of pity — those who are pitied are looked down upon; they are render pathetic. And yet to avoid this, sometimes I feel that some of our representations of ourselves and our children risk running toward the pious, marked by a sense of duty and self-sacrifice that is, for me, equally discomforting.

I long for an intersubjectivity that relies on equity and equality, where I'm neither pitiful nor noble in my parenting, but a person breathing in and breathing out, and sometimes reminding my own Sweet and Sour M to do the same.

Keywords:

15 comments:

María Luján said...

Hi Mother Vox
I think that this video, that I can not see because of a problem of interface, reflects what autism is for many families, beyond any promotion of funding requirement. It presents the state of the things and the lack of support that many families ( parents included obviously) must face every day. For me, I do not think in pity or piety. I want respect for my efforts- and for other moms efforts. I want respect by my decissions in terms of treatment based on informed and responsible decisions. I want respect for all the challenges I must face. I want respect for my son, the education he needs, the doctors he needs, the consideration of all the medical conditions he can have, the proper testing and adequate treatment of them, the research about all the potential components (genetic and environmental) involved. I want respect by the individual he is and the family we are. I want respect for me, for my pain and for my personal evolution . We all do the best we can, not what we want, to face the challenges that autism in our children brings us with the resources we can obtain.
I think that most of the criticism is related to see the autism as only another way of being, but honestly I think that autism is much more complex than this. Even when Acceptation and love is extremely important, many other aspects are also related to life´s quality and adequate parent´s support. Many parents can not face the challenges of autism because the challenges requiere a lot of advice ( from doctors, from others) they are not having.
The video , reading the comments, presents the desperation of many parents facing these challenges. Having the privilege of access to adequate treatment and an individualized presentation of autism without the most extreme challenges today that many parents face every day, I think is heartbreaking and awful how these families are lacking of adequate support.I am trying to understand the controversy about and what is presented in the video.
What do you think?
María Luján

ballastexistenz said...

During the Chinese cultural revolution such revelations were called "speaking bitterness." And in the women's movement, it was called consciousness raising. The goal is to build awareness, understanding, and solidarity. Autism parents, and autistic people, and autistic parents each have their anguish — and triumphs — to share.

The Chinese Cultural Revolution had horrible results, and "speaking bitterness" was used as a tool of social control and keeping people in line, to have information that could be used against people later, to keep tabs on people. Likewise, "consciousness raising" (which was modeled on the Chinese thing) led to "feminist therapy" which destroyed a lot of the effectiveness of feminism.

I agree with you totally that there's a comparison here, but I cannot imagine such a comparison reflecting favorably on Autism Speaks or that segment of the parent movement in general.

A lot of what you say makes this sound almost "progressive", but there's nothing "progressive" about anything that so totally disenfranchises and degrades autistic people as that segment of the parent movement does.

And as I said in another post, nostril and thrill have the same Anglo-Saxon root, but I don't find nostrils very thrilling, nor piety very close to pity at all. My name can be translated as "lovable" or even "she who must be loved," but not everyone loves me, most people don't find me particularly lovable, and some people go so far as to hate me.

Positive emotional reactions may be persuasive (and identification with those parents was something they were calculatedly going for), but they don't make something right.

Kristina Chew said...

There's also a Mandaran expression, chi ku, eating bitter. Although the words I have often thought of in living in Autismland are glukupikron, Sappho's for "bittersweet."

feh! said...

So, lets say these children survive their parents attempts to parent and/or cure and/or kill them. How would you like to be Alison Tepper Singer's daughter with the cameraman in your bedroom where you have gone to get away from the racket and he follows you in as you flip on your back on your bed legs flying in the air.

How'd you like to be the boy who is only filmed flipping his hands so that people can feel sorry for his mom? Put yourself in the place of autistic adults who are totally disenfranchised by that video, as were parents who don't buy the thimerosal connection. All of those women are mercury parents from what I have read up until now, Katie Wright says something about how horrible it is that something was taken (gulp) from her son.

Nothing was taken from her son. Nothing. He's not a walking toxic waste dump. He's not in need of chelation or antivirals or HBOT or RNA drops or saunas to cure him, though his mother would likely disagree.

kyra said...

thank you for this post, mother vox.

i had problems with certain aspects of the film, i winced here and there and didn't like watching these women talk in front of their kids about any of it since i think their kids could very well hear. but overall, i liked the film too. i felt a kinship with these women, with the isolation and stress of parenting kids on the spectrum. after all, we were seeing only a few moments in their lives. we don't know the whole story. but we got to see what we, on the edges of autism know, that part of the picture is hard and we need to see it and acknowledge it and have it be part of the conversation.

María Luján said...

feh!
I think that the way the children were allowed to be presented in the video, how moms talk about them like if they were not there or being able to hear is part of the lack of support I mentioned.
I was told that my son would be like a chair, without feelings. I was told that he will be almost like an animal.If the only information you receive is of this kind, if you do not have the privilege of access to other information or to the resources of the way needed to cope with the situation ( educational, medical, of the character needed) to understand how autistics learn or feel it is very difficult to evolve from initial desperation.
I do not agree with this particular situation. It is unrespectful for the children, it is unfair for them and it is heartbreaking. But the parents for me are not the ones to blame, I am sorry. Who provides support and information and resources to them to understand, to learn, to have informed and responsible decisions? This is my question. I agree that many parents can find another positions by themselves, but they have the privilege of high education or different access to better information or different personalities to face the challenges that autism can present to parents.
María Luján

ballastexistenz said...

I have said it before and I will say it again:

I will cut slack to parents without access to information, who are on their own, and struggling.

I will cut no slack whatsoever to parents who have formed wealthy and influential groups of parents that seek to influence policy by public displays of that nature Once they do that, they have a responsibility that goes beyond the responsibility of a person figurig things out in private. These are not underprivileged parents, these are very well-connected types with a budget to spend on making movies, and they do have a responsibility not to put up harmful information when they publish.

As ABFH once said, if a mother drives her car off a bridge with a child in it after watching that film, the blood of the mother and child is on those people's hands. There's ignorance and there's massive public well-funded displays of ignorance to manipulate people. One is excusable, the other is not.

MothersVox said...

I'm grateful for the thoughtful comments of everyone.

Feh!, I'm a parent who doesn't buy the thimerosal hypothesis, and I didn't feel disenfranchised by this film.

And, if I were an autistic person, there is a good chance that this film would enrage me.

If I try to view it from the point of view of an autistic person -- something that I can do only with very partial effectiveness -- I can feel angry about it.

The fact that the children were in the room when the parents were talking about the difficulties that parenting entails is thoughtless and disturbing, at best, and reprehensible at worst.

And should the cameraperson and/or director have pursued the girl into her room? No. He or she should not have. I can't presume to know how the girl would have felt, but I would have felt invaded had it been me, even with my neurotypical perception. I'm not wild about being photographed for reasons that have to do with other sorts of differences.

So the film should, probably, enrage me as well. But it didn't. And why is that? Because autism moms need to tell their stories.

Would it have been better if the autism moms had a greater degree of control of the representations made of them and their families -- as, for Sue Rubin had over her representation of self in Autism is a World? Yes, I think it would have been better.

Was the film a fund raising tool? Undoubtedly.

But I think it is simply erroneous to suggest that parenting a child in the spectrum is no harder than parenting a neurotypical child.

Stating this does not mean that the autistic child is "defective" or "damaged" or "less than." Rather it means that in a culture where there is a war on parents (see Cornell West on this idea) and a war on difference (including, but not limited to, neurological differences) that autism parents face a doubled pair of challenges: the challenges of parenting kids who have a hard time in the world, and the challenges of trying to open the world, to change the world, to make it accepting of their atypical kids and atypical families.

Ballastexistenz, we could quarrel about the impact and injustices of the Cultural Revolution, and the role of consciousness raising in the women's movement and we could go back and forth about the improtance of etymology, but I think that we have a similar goal of a world in which neurological differences (along with a whole array of other differences) are honored and valued.

One of those differences is that being a parent of a child on or near the spectrum is a very different position than being a person in the spectrum.

But since the people that autism moms most love are often people in the spectrum, we have the potential to be among the strongest allies for autistic people.

How do we foster those alliances without denying each other's realities?

Do'C said...

"How do we foster those alliances without denying each other's realities?"

And therein lies the touchstone. What is reality? How is that reality formed and interpreted? How do those realities affect a child long after the parents are gone?

ballastexistenz said...

My father is both a parent and "on the spectrum," as are many of the parents in these blogs, so they aren't mutually exclusive.

As Zilari said in response to this post, nobody's denying anything about the difficulty of raising autistic children. People are talking about this specific video being a bad thing, a harmful thing, and a dangerous thing to broadcast to the world, and a thing that truly helps nobody ("validating someone's feelings" doesn't necessarily constitute "helping people", and can in fact harm people depending on what exactly is being "validated"). Can you see the difference?

As for what I think of the role of consciousness-raising in the women's movement or the impact of the Chinese Cultural Revolution, those are not side-notes, those are central to a difference in opinion that probably extends straight to our difference in opinion over the role of this video. If you think those things are good for the same reason that you think this video is good, then you think something is good and useful and right that I think is bad and harmful and damaging and dangerous and wrong. If you're going to make an analogy, it's probably good not to sit there and trivialize it as soon as someone brings up the potential dangers that become a common thread in all three scenarios presented.

MothersVox said...

My father is both a parent and "on the spectrum," as are many of the parents in these blogs, so they aren't mutually exclusive.

Of course they aren't. Forgive me if my text suggested that these positions are.

But nor are they always co-existent either.

And that is the rub, as Dad o' Cameron seems to suggest. There is no singular and correct reality here.

As for people saying that parenting is always hard, and that autism parenting is no different, there are suggestions about this throughout the debates regarding this film, and in a number of blogs. There are also suggestions that the parents and siblings of autistic kids provoke the kids' episodes/meltdowns/autistic moments, or whatever we want to call them. See, for example, the comments at Autism Vox: It's Just Not Autism Speaking.

When I think of how much time, thought, energy and effort that we have take in our household, and that M's teachers expend at her school, trying to accommodate and forestall her autistic moments, I think it is erroneous to suggest that most episodes are "provoked." But, of course, that is only the experience in our family and her school. I'm sure there are contexts where cruelty and provocation are the order of the day, and that's deplorable.

I like what Kyra and Wade Rankin each wrote about parenting children in the spectrum. Our kids and their neurological dispositions are not a tragedy, but their neurological dispositions, in the world that we live in, pose considerable challenges -- for them most of all, and for us, as their parents.

Ballastexistenz, if you want to have a sidebar debate about consciousness raising, email me and we'll have that dialogue. Perhaps we disagree about the importance of consciousness-raising . . . though I would be surprised if we did, since so much of your important work is doing consciousness-raising about the oppression of autistic people.

Do'C said...

"And that is the rub, as Dad o' Cameron seems to suggest. There is no singular and correct reality here."

I'm suggesting the opposite, though not necessarily as black and white as "singular" and "correct". More along the lines of the difference between living in subjectve vs. objective reality. Not singular, but closer to universal. And not correct, but closer to producing the greatest good for the most people.

Alyric said...

Dear Voix de Maman

Can I borrow this?:

"During the Chinese cultural revolution such revelations were called "speaking bitterness." And in the women's movement, it was called consciousness raising. The goal is to build awareness, understanding, and solidarity. Autism parents, and autistic people, and autistic parents each have their anguish — and triumphs — to share."

This perfectly describes a perfectly normal phenomenon, but as Dinah Murray famously said - Normal isn't necessarily wonderful.

It's something I've written about previously and informally. The main goal of 'autism' societies of every stripe, unless they happen to be run by autistics, is emotional support for the parents. Nothing wrong with that in principle, but in practice.... Well, there's the phenomenon of the 'ladies morning tea', where it used to be that the main topics for discussion were the erring husband and the wayward kids - and the character assassination of whoever wasn't there that day.

Notice how little difference there is in flavour between this PSA and the ladies gossipfest of yore? Still doing the same thing, but with the dissemination power of the web. Not a good thing IMO. This sort of thing was known about, frowned upon and tolerated as a fairly harmless sort of 'I feel your pain' catharsis.

Except now it isn't harmless. In about a hundred different but obvious ways this PSA can do nothing but harm, ironically to that group, which superficially represents the raison d'etre for autism societies - their autistic kids.

Alyric said...

>>>"When men share information, we call it education, or networking, or the transfer of knowledge. When women share information, we often call it gossip. That concerns me."<<<<

I don't think I get what you're trying to say here, though I probably don't have quite the same definition of gossip. Mine's not all that negative - it's what social people do and it's not as if they can help it. They're wired that way.

>>>Part of what troubles me in the mom-bashing that has accompanied the reasoned critiques of the video is the latent mother-blame and mother-demonization that I see in some of the posts.<<<

Well, I don't see my tiny post as mom bashing.

>>>>Are too many autism resources devoted to autism parents, as Alryic suggests? <<<<

I haven't a clue where you got that from, and it's definitely the wrong sow - try another ear. I though I'd made it quite clear - the reason for 'autism' societies is so that the 'affected' can get together. I'ts normal, it's a social thing. it's what all social people do in all situations, especially if they can have a sense of solidarity or group identity about something. That's why they're called social.

The social imperative can however have negative consequences as is very evident in this video. Reason - simple - the emotional bonding yada yada took precedence over every other consideration, including the very obvious negative consequences to autistic children.

This isn't a new thing. I originally wrote about it to explain why autistic folk kept getting the boot from on-line support groups and for no real reason. Sometimes the exchanges were just so blatant, but no matter who did what, the autistic was always the one to go, because the social imperative, the raison d'etre for the group was paramount, no matter what the blurb on the site said.

>>>But without coalitions, autistic people and their families will continue to battle over scraps<<<

Not all coalitions are beneficial to all participants and I do think that there should be some name changing in the interests of truth in advertising. Again 'Autism Speaks' is a particularly egregious example. 'Autism Speaks Third Voice' would be closer to the mark.

MothersVox said...

When men share information, we call it education, or networking, or the transfer of knowledge. When women share information, we often call it gossip. That concerns me.

Part of what troubles me in the mom-bashing that has accompanied the reasoned critiques of the video is the latent mother-blame and mother-demonization that I see in some of the posts.

There is much to agree with in the critiques of this videotape/film, but it seems to me that that autism moms -- and autistic individuals -- and autistic moms -- deserve to be heard.

Are too many autism resources devoted to autism parents, as Alryic suggests?

Too few resources are devoted to everything that has to do with autism -- from parenting to independent living, from research to education.

But without coalitions, autistic people and their families will continue to battle over scraps.