Connecting dots

I wrote the following post at Square 8 for Blogging Against Disablism Day. Now I am reposting it here.

BADD: Connecting dots

Somebody calls autism a tragedy. Somebody kills an autistic person. Somebody doesn’t see how these two events are connected. I try to explain. I try harder. It happens again and again and again and somebody ‘splains it away.
 
The topic here is devaluation. When it becomes commonplace to pair the words autism and tragedy, the pairing seeps deep down into the collective mind. When the puzzle piece becomes the recognized symbol for autism, the message comes over and over that there is something unfinished about the person. Something mysterious that the general public cannot be expected to understand. Now when someone hears “autism,” tragedy echoes in the background. Puzzlement reverberates. This one is not like the others. This one is out of our range of understanding and compassion.
 
Somebody calls my request for respectful language and symbolism “political correctness.” Although this respect exists barely anywhere, it is portrayed as enforced, and therefore something that must be rebelled against. Somebody gets the bright idea to light buildings up blue for awareness. Everybody is more aware of the tragedy and the mystery and otherness. Nobody asks autistic people what this might mean for their futures.
 
She wants a job, but the employer has heard that people like her are prone to violence. She wants to live on her own, but she carries the luggage stickered with claims of eternal childhood and helplessness. She needs a communication device, but someone knows this is pointless because she is empty. Someone has heard things. Out of frustration, she bangs her head. Somebody takes this as evidence, now she is locked away.
 
Somewhere else, another child has been diagnosed with autism. He is forced to drink bleach, drowned in a bathtub, or smothered to death. This is the true meaning of tragedy. The voices are crying for understanding, not for the murdered but for their killers. The difficult, difficult lives they have led, autism is to blame. A puzzle piece is affixed to another bumper, the enigma of autism advertised, along with the pleas for an end to it, spewing out into the air as someone else drives on into the darkness.
 

This post is offered for Blogging Against Disablism Day in honor of Katie McCarron (2002-2006).

People not Puzzles

Melanie Yergeau Speaks

Please visit her blog, Aspie Rhetor

Do you have a relevant photo or artwork to contribute? Email unpuzzledautistic@gmail.com to submit

I am not a puzzle: From Reports from a Resident Alien

The following discussion of the puzzle piece and infinity symbols was written by Chaoticidealism at Reports from a Resident Alien, and is shared with her permission. Read more Reports from a Resident Alien here.

(Originally posted on the Autism Speaks forum.)

I don’t like the puzzle piece ribbon to symbolize autism.

When I say “I am not a puzzle piece”, I mean:

1. I’m a whole person–I don’t have any pieces missing. I don’t need to be put together or fixed. Even people with very low functioning autism are still whole people; and they don’t need to be fixed either. Educated, yes. Treated, yes. But having a disability doesn’t make you any less of a person, even if that disability means you can’t communicate your personhood very well.

2. The “mystery of autism” isn’t any deeper than the “mystery” of any other disorder whose mechanism we don’t quite understand yet. That isn’t enough to justify using puzzle pieces to symbolize autism, and not (for example) schizophrenia, Tourette’s, or diabetes.

3. The communication barrier between an autistic person and a non-autistic person means that the autistic person’s thoughts are often unknown–that is, a “puzzle” to the non-autistic. However, I don’t like using a puzzle piece to symbolize this because it seems to say that those thoughts are not only unknown but unknowable; and that is just not true. It takes more effort from both sides to bridge the gap; but it can be done. Even screaming is communication, when you get right down to it; and even a totally nonverbal person understands what warmth and food and comfort mean.

This is the alternative I would like to see used, the rainbow infinity symbol:


 

Here’s why it stands for autism.

  • First of all, the rainbow is a spectrum of color just like autism is a spectrum. The colors are different but they are all part of a larger scheme, just like autism is diverse but connected.
  • The infinity symbol represents mystery, just like a puzzle piece does; but in a more positive way. Infinity is a quantity in math that isn’t quite knowable, but it’s very large.
  • The more math-loving part of the Spectrum also rather enjoys the mathematical aspect of the infinity symbol: When you work with infinities, you often end up with undefined quantities–variables that don’t have a definition. But the nice thing about those variables is that, if you work with them right, you can once again define them…
  • The infinity symbol also represents the way we tend to choose one thing and perseverate on it, whether it’s lining up blocks or quantum physics. It represents the enjoyment of loving something and spending your time doing it–over and over!

I would much rather be a rainbow infinity symbol than a puzzle piece…

Post-Puzzle Piece Autism: From Both Hands and a Flashlight

Tim, who blogs at Both Hands and a Flashlight, had this to say about the puzzle piece theme in November of 2008:

Unless you’ve been living in a cave for the last couple of years, you likely have seen the puzzle piece that has become the predominant symbol of autism.

I’ll just come out and say it bluntly: I hate it.

If someone thought a puzzle piece was an accurate representation of me, I’d be pretty ticked off to put it mildly.

Admittedly part of it may be that the over-commercialization of it has become as bad as the Christmas season. Autism Speaks has once again discovered a way to jump the big swimming fish by offering us silver puzzle cufflinks in a “lovely black gift box”, helpfully categorized under “Glamourous Gifts” in their store. I think I just threw up in my mouth a little. Perhaps I could hurl in the Autism Camo Baseball Cap or the Logo Etched Champagne Flutes instead… [Ed. - Sadly, the champagne flutes appear to no longer be available... However, they appear to have expanded their camo-themed apparel line.]

[Hint to Mary - This is not what I want for Christmas.]

I’ve been pondering this for months and am beginning to have a clearer way of expressing why this bugs me so much. Perhaps it’s because I think the puzzle piece symbol is all about us (parents, family, friends, medical professionals, educators, researchers, etc.) and not at all about people who are autistic. I’m really starting to question whether this is not a symbol of autism but instead a symbol of our own fears and uncertainties. I wonder if we’re the ones with the missing puzzle piece and whether we’ll ever feel at peace with ourselves until we figure out where to look.

The rebellion against the puzzle piece is swelling. I have no talent for coming up with this sort of thing on my own, though I tend to know what I like. My hope is that support someday coalesces behind a much better alternative. In the meantime, the multitude of great ideas out there are incredibly creative.

Mother of Shrek has a great post about the evolution of symbols and logos with many sample ideas. I’m already fond of The National Autistic Society’s updated logo. It’s infinitely more positive and inclusive to me.

LOGO_RGB_150x150.jpg

I hunted around for some more and found this one done by Bob King at GraphicTruth.com. I think it’s pretty slick just in its own right, but even more than that, it’s a powerful statement.

BIG unpuzzled.jpg

Which leads me to a little suggestion. How about all autism-related organizations commit to having their logos designed or redesigned by someone who is autistic?

Feel free to use the comments area to link to other logos and symbols you like. And feel free to use it to flame me too if you feel the need to. I welcome all feedback. :-)

Thanks for allowing this to be reposted, Tim. And yes, I hate it too!  Read more at Both Hands and a Flashlight.

This

An important statement from In My Language by Amanda Baggs:

I find it very interesting by the way that failure to learn your language is seen as a deficit, but failure to learn my language is seen as so natural that people like me are officially described as mysterious and puzzling rather than anyone admitting that it is themselves who are confused, not autistic people or other cognitively disabled people who are inherently confusing.

Watch the video here.

The puzzling agendas of autism societies

How do you feel about her handing these out? She was asking my supervisor. I had already left. The event was called A Celebration of Disability. Only one booth had a puzzle piece displayed. Of course it was the local autism society. I had taken with me a fresh supply of these cards and left a few at the table.

She explained to him that the puzzle piece is about not understanding autism. There was some discussion of my being “high functioning” or some such thing. So this morning, there was the conversation with the supervisor. We have to listen to all sides of the issue. That sort of thing. Everyone has a right to his or her views and opinions.

I don’t disagree. Everyone does have a right. But there is a problem. There are many, many more non-autistic people than autistic people. If everyone’s voice counts equally, we will always lose. I don’t expect the autism societies will give up their puzzle pieces any time soon. It’s an issue of branding. Everyone knows the puzzle piece “means” autism. That familiarity is more important to the autism societies than the consequences to autistic people of being objectified and silenced. 

I would like to see  increased recognition that autistics are a minority group. Whether or not you believe that autistic people are the true experts on autism, shouldn’t we be heard when we say that a particular representation of autism is offensive? Not everyone thinks so. We all have our own opinions.

Puzzling excuse number 128: It doesn’t represent autistic people!

It comes with the look halfway between perplexed and pitying. Because how could I not get it? And yet how could I, supposedly lacking Theory of Mind and understanding of symbolic language?  It comes with an edge to the voice and the slightest roll of the eye. The puzzle piece, she explains, slowly, pointedly, as to an errant child, stands for the mystery of autism! Not autistic people, but how we still don’t know what causes it!

And because it stands for what causes me to be me, well, obviously I shouldn’t be offended. I try to explain that autism is not, cannot be, separate from the person, using the points Jim Sinclair outlined here. But then I look again. On her lapel is the most famous of all puzzle pieces. Of course I’ve seen it thousands of times, but I have to check, just in case I’ve been mistaken.

Nope, it’s still the same. A puzzle piece shape in bright blue with legs, arms, and a shrunken little head. I’m pretty sure this is a person. Am I the only one who sees it? And while the Autism Speaks logo might not be the original autism puzzle piece, it is certainly the most recognizable. It represents a person, and despite my history of  pareidolia there is no way you are going to convince me otherwise.

Logos, Symbols, Ribbons…: From The Autistic Me

Autistic people have been writing about the offensive nature of the puzzle piece symbol for years. This 2008 post by C.S. Wyatt is a good example:

Ribbons and wristbands are a fairly poor way to indicate interest in a cause. When there is a dedicated color of ribbon or wristband for every issue or cause, none of the rainbow matters. A chest full of ribbons, aligned in some proto-military fashion, seems ludicrous.

So, one more ribbon should matter. But it does.

The Autism Awareness campaign uses either a puzzle-piece pattern or a tie-dye pattern with purple dominant. For some reason, these do bother me more than the dozens (hundreds?) of ribbons we are supposed to associate with causes.

Autistic individuals are puzzles? They are distorted, psychedelic minds? Exactly what is the message? Not that all people aren’t puzzles, but to think one group is any more puzzling is a curious claim. How does this promote understanding? The claim that we are all part of the greater puzzle… no, a puzzle is a mystery. The message to me that autism and autistic people are strange, mysterious.

I wish there were other symbols, less reductive symbols, for autism awareness. Puzzle pieces are simply offensive.

C.S. Wyatt blogs at The Autistic Me. Read more here.

On Puzzles, Privilege, and Missing Pronouns: From Journeys with Autism

It seems likely that everyone has some concept or situation he or she finds puzzling. I find statistics difficult, but that doesn’t mean that objectively, statistics don’t make sense. The fault lies with my comprehension, not with statistics. This 2010 post by Rachel Cohen-Rottenberg discusses the problem with those who attempt to portray autism as intrinsically puzzling. Theory of Mind, anyone?

When I read blogs by the parents of autistic children, I often happen across the puzzle metaphor. It finds its way into statements such as “My autistic daughter is such a puzzle” or “We’re still putting together the pieces of the puzzle that is my son.” I’ve always had a visceral response to the puzzle image to describe autism and autistic people, especially when used in the puzzle-piece logo of the Organization-That-Shall-Not-Be-Named. It’s so offensive on a gut level that I’m having difficulty even beginning to write about it.

A puzzle suggests the idea that there might be some pieces missing. Of course, such an idea is anathema to me, when applied to any person on the planet. The only way in which you could look at a person and see pieces missing is if you begin with a preconceived notion of what a person is supposed to look like. If the person doesn’t fit that preconceived picture in your mind, then you see all kinds of gaps. But if you see the person for himself or herself, and accept the person as a given, without reference to an outside standard, then the picture becomes whole. The person is simply a person, on his or her own terms—nothing more and nothing less.

If you begin with an idea of “normal” that says that a person should be able to speak by the age of two like “normal” children, enjoy the same kinds of activities as “normal” adults, and socialize in a “normal” fashion, you’ve got a seriously complex, preconceived image of what it means to be a whole person. It’s nearly impossible that any atypical person could even begin to approach that image of normal. When we don’t, some of us are told that we’ve got pieces missing. Autistic people are told that we lack empathy, theory of mind, central coherence, and the ability to live as social beings—which, by the by, is all complete and utter nonsense, just in case you were wondering.

So who gets to decide what picture is normal? Other people who have the privilege of defining themselves as normal, that’s who. It’s a nearly invisible privilege for the most part, because it’s everywhere. It’s taken me a long time to see it and, ironically enough, I’ve begun to see it by virtue of what is missing from the language of many of the non-autistic people who talk about us.

Two words are missing from the statement “My autistic daughter is such a puzzle”—two little words that would change that sentence from an expression of privilege to an expression of a personal experience. And those two little words are to me. If someone were to write, “My daughter is such a puzzle to me,” then we’d be getting somewhere. All it takes is the inclusion of the personal pronoun. Of course, there is still that little issue of the puzzle metaphor, which runs the risk of portraying the child as a series of pieces, but at least the source of the fragmented perception would stay where it belongs: in the eye of the beholder. The speaker would be taking responsibility for describing his or her own limited perception rather than an objective fact.

Another example of this limited perception appeared on a recent blog by a parent who said that her autistic child is afraid of things “that just aren’t scary.” She didn’t say “that just aren’t scary to me.” She said, “that just aren’t scary,” as though there were an objective measure of what’s scary. These words imply that somewhere in the far reaches of the universe, there is some ideal called scary, we all know what it is and, if we’re scared of things that don’t measure up to that ideal of scary, something is terribly wrong. Now, I have always assumed that being frightened was a subjective experience, and that an image or a situation that frightened one person might not frighten another. I have never assumed that what went on in my own mind was exactly the same as what went on in other people’s minds. Far from it.

But wait a minute. I remember reading somewhere that being able to understand that other people think differently than I do is called having Theory of Mind (ToM). So, miracle of miracles, I actually have ToM, autistic though I am! And when a non-autistic person can’t imagine why an autistic person might be afraid of something, that non-autistic person seems to lack ToM. I see evidence that non-autistic people lack ToM regarding autistic people all the time. In fact, I see it in the work of “experts” on autism, and yet rarely does anyone call them on it. Usually, the ones who do the calling out are autistic people like me, who by definition don’t understand ToM, so we’re dismissed before we begin.

And once we’re dismissed, people can own the discourse about us and say just about anything they want. Consider the following:

A non-autistic person says that the world of an autistic person is a puzzle. That statement is taken as objective truth by most non-autistic people. In fact, it is irrefutable evidence that the person speaking is “normal” and that the person being spoken of has a “disorder.” All too often, family, friends, teachers, and professionals look at the autistic person, shake their heads, and say, “Yes, you’re right. Poor thing. He certainly is a puzzle!”

An autistic person says that the world of neurotypical people is a puzzle. That statement is taken as a purely subjective perception by most non-autistic people. In fact, it is irrefutable evidence that the person speaking has a “disorder” and that the people being spoken of are “normal.” All too often, family, friends, teachers, and professionals look at the autistic person, shake their heads, and say, “Poor thing. He’s so impaired. He just doesn’t understand us.”

Could the arbitrary nature of privilege be any clearer when one set of people has “understanding” when they don’t understand, and the other set of people is “impaired” when they don’t understand? Maybe it’s that I’m autistic, or a born democrat, or hopelessly addicted to fairness, but I find this kind of imbalance deeply disturbing and painfully unjust.

So what do I do when I meet the puzzle metaphor? Well, obviously, I write about it. And then, I create signs like this one:

 Because I am a whole person, not a collection of jigsaw pieces.

Rachel blogs at Journeys with Autism. Read more here.

Puzzling People: From The Standard Review

Ed from The Standard Review offers his perspective on the puzzle piece symbol today:

Using a puzzle piece as a symbol for autism awareness encourages the idea that our society is interested in support for autistics. Not only is this not helpful but the way the campaigners are falling short of the supposed goal is only the beginning how this causes problems.

Disability rights activists have done much to encourage a better view of disability but bigoted traditions are deeply rooted in our culture. The ways that pity is not only hurtful but dangerous is not something society’s leaders have been willing to accept. If you describe a problem in order to provide a solution but then don’t provide one, you have instead defined the people with the problem as needing to be eliminated. This is what promotes autism awareness, and the abuse and neglect of autistics has been encouraged as a result of the campaign.

The puzzle piece symbol encourages people to believe that autistics are mysterious, and that we have some strange disorder. It’s believed that there is an epidemic of autism similar to an alien invasion. The way our society deal with an alien invasion is similar to what is taught in science fiction movies. We attack with the goal of eliminating the aliens. Some would claim the goal is to eliminate the source, but this is not the way our culture deals with these issues.

Please read the rest of Ed’s post here.

Follow

Get every new post delivered to your Inbox.