3/25/2013

What the Clash Between Autistic Advocates and Autism Advocates Misses

Warning: Defensive Posture Engaged. Yeah, a lot of times defense looks and feels like offense (sports analogy employed here).

I didn't say anything months ago when autistic advocates began running a series of memes that turned inspiration porn upside down, using photos of "neurotypicals" and the rhetoric used when it's someone with a disability doing something, with the goal being to point out if they can do it, so should fat, lazy slobs. These were meant to be snarky, and many autistic advocates and their allies had a blast making and sharing them.

Who wants to be wet blanket when people are lashing out against something that has cut them, worn them down, made them marginalized? I could understand the impulse.

Inspirational memes are not new, although the photos and rhetoric going viral on facebook might be a relatively new development. Human beings love to root for the underdog, look for inspiration everywhere, and the disabled people who overcome adversity to become homecoming queen or to play on a basketball team in the last minutes of the last game of the season are all the rage.

Reacting angrily over these stories and how "neurotypicals" use these feel-good stories to feel good about themselves is also all the rage. And also understandable.

I also didn't say anything when my friends into fitness posted their version of inspiration porn--oversized women exercising. You see, inspiration porn is everywhere, and constantly policing other people's freedom of expression would take up more time than I have and lead everyone to the conclusion that I'm a bit of a pedantic dick.

Speaking of which, reviewing Socrates' Apology leads me to wonder if he wasn't a bit autistic--no, not because Athenians thought he was enough of a pedantic dick that they sentenced him to death, but because his concern for and desire to understand how people acquired knowledge or lacked it seems a bit autistic to me, at least the way he appears to have pursued it. And there we'd have our first apparent case of an autistic individual being persecuted for thinking and experiencing the world in a different way than is typical.

But I, as usual, digress.

There's a serious and real divide in the autism-related community that is further isolating all of us from the wide diversity of human experience.

I'm not blaming autistic advocates who, rightfully tired of being marginalized not only throughout the year but especially during April Autism Awareness Month, are counterproposing a similarly snarky comeback, that of the Tone it Down Taupe Month (see Judy Endow or Radical Neurodivergence). --readers, please see comments below for Neurodivergent K's responses and criticisms of this piece--also, I reacted to a specific paragraph that appeared snarky in K's post. The remainder of her post was not, nor is Judy Endow's facebook status about this campaign. My apologies for the misconstrual and the conflation--the Taupe campaign notes that 49 "lack autism" which is not the same as "are neurotypical" (my quotes for emphasis).

Far from it. It's an active, clever and snarky attempt to point out how marginalizing and demeaning the fear rhetoric that many autism organizations pull out all the stops on in the month of April with the intent to increase donations. Fear sells.

But... 1 in 49 people are not neurotypical. --again, the Taupe campaign does not claim they are, just that they lack autism-- Far from it. If we start to actually look at the number of individuals impacted just neurologically with a diagnosis that removes them from the arbitrary and false idea of neurotypicality, then the clash between autistic advocates tired of rhetoric that is hurtful, stereotypical, and dehumanizing and those who perpetrate that rhetoric could be targeted directly where it needs to be.

Please let the remainder of this post stand separate from the Taupe campaign. One of the things many of us do in the autism community is forget that autism is not the most prevalent neurodiverse condition. My main contention is that neurotypicality is a myth, and that the numbers below should show that. I didn't even look at those with learning disabilities, for example. I would be surprised if there are even 47% of people who could be said to be neurotypical--a stereotype of normality that I don't believe exists.

After all, all the other neurodiverse individuals should be allies in the fight to change how we talk about the human condition.

The numbers may keep changing about autism prevalence, but that doesn't mean that everyone else is normal and outside the group.

We need to think inclusively. We need to remember that the human condition is a complicated, diverse condition.

1 in 50. 1 in 38. 1 in 88. Whatever the true prevalence, the reality is that the prevalence of BAPpy is even higher.

Let's quadruple that number, and use the 1 in 50, which we'll make 2 in 100 for easy math because I can do that math without a calculator.

8 in 100 people experience BAPpiness. They stand in solidarity with their autistic kin, who got the spread of BAPpy traits in spades. (Okay, some of them might be curebies and standing against them--not sure how we'd figure out that number).

Shit, the math is going to get complicated, but if autistics and allies are going to go Taupe, let's get the number right (well, estimated, but right). Do we really want to paint BAPpy people taupe? Or our ADHD brethren? Or bipolar or schizophrenic brethren (surely we don't count them in with neurotypicals)?

So here are the NIMH's numbers, so we can crunch them.

ADHD in adults is 4.1% or 4 in 100. (higher in children)

MOOD DISORDERS: 9.5% or 10 in 100

No way folks dealing with these neurological existences should be thrown in with neurotypical.

Subheadings:

Major Depressive: 6.7% or 7 in 100 (rounding up)

Dysthemics: 1.5% or 1 in 100 (rounding down, inappropriate, politically uncorrect joke withheld as to why)

Bipolar: 2.6% or 3 in 100 (rounding up) [in the family]

Schizophrenia: 1.1% or 1 in 100 [in the family]

Anxiety Disorders: 18.1% or 18 in 100 [WAVES HELLO FEVERISHLY!]

Subheadings: 

Panic Disorder: 2.7% or 3 in 100 [I regularly deal with panic attacks]

OCD: 1% or 1 in 100

PTSD: 3.5% or roughly 4 in 100

Generalized Anxiety Disorder: 3.1% or 3 in 100 [umm, ding ding ding]

Social Phobia: 6.8 % or 7 in 100

Next category up is Personality Disorders...hmmmm. Well, some of those are undesirable, aren't they? Who wants to be lumped with antisocial personality disorder? Huh, this is going to be tough. Do we separate them out from neurotypical but not be inclusive of them on our side? Wow, that really is tough. Let's count them so that we can remove them from that neurotypical number, although we could argue that some of the people with the most hateful rhetoric are probably sociopathic or at least assholes, am I right?

Personality Disorders: 9.1% or 9 in 100.
Alrighty, let's see if there are any "normal" people left. After all, we haven't counted the cases of Epilepsy, of genetic variants/disabilities like Down Syndrome, or Cerebral Palsy, or the physically disabled...There's a lot of people we haven't accounted for. Damn shame to lump them in with neurotypical people.

Anyway--math time!

Okay:
Autism                             2 in 100
BAPpy                              8 in 100
ADHD                               4 in 100
MOOD DISORDERS  10 in 100 
Anxiety Disorders        18 in 100
Personality Disorders    9 in 100
                                        ------------
                                        51 in 100

Down Syndrome            .1 in 100
Cerebral Palsy               .33 in 100
Intellectual Disability    1.5 in 100
(according to CDC)     _________
                                       53 in 100 (approximate)

Weird, though how numbers are calculated because according to the CDC, 1 in 5 Americans report a disability, or 20 in 100. Now, you can have a disability and be lumped in with neurotypical, I imagine, as long as your disability is only physical, but is that fair or even correct, as a physical disability can and does lead to being non neurotypical? I mean, we're defining neurotypicals as assholes with privilege who unfairly stigmatize and marginalize those who are different, right? Well, I am, anyway. Wait a minute...if I start to marginalize and stigmatize assholes, does that make me an asshole? Oh, the conundrums.

I don't think we can get a clear count of this at all.

I mean, do we go with 47 in 100 or 1 in 2 people are neurotypical or do we go with the lower CDC number of 4 in 5 people are neurotypical?

It's dicey. Which will really pack the most punch? Give us the most bang for our buck, so to speak, although obviously we're not going to give money to these people--they have the money, right? They're the ones walking around marginalizing and stigmatizing the neurodiverse and disabled, after all.

The problem is that all of these people are people. You know? They're flawed, and just because they have one disability doesn't mean they aren't shitting all over people with another disability.

Choosing our ingroup is a right bitch. I mean, do we reserve it for just those people who agree with us on one issue? Do we widen it, so we have greater numbers? Or do we want to make ourselves as small as possible so we're as marginalized as possible? We do like those underdog stories...

Humor is good. Humor can cleanse our souls and rid us of bitterness and rage and despondency. Humor is a hell of a weapon to wield.

I'm all for it. 

Snarkiness is a rich tool, as well. The difference between humor and snarkiness is there--snarkiness is sliding into snideness, and I don't think any of us want to go all the way to snide. No winners there.

Humor and inclusion. I'm going to go with those and suggest that rather than pitting the autistics against the elusive neurotypical tribe that casts everyone not autistic into it; that we pit, if we must, all of us against the assholes who marginalize, trivialize, stigmatize, and fearmonger (and hope we aren't pitting ourselves against ourselves).

The problem with that is how do you get that number? And what color are assholes? I'd say we darken the taupe to shit-brown.

If we must.

Huh. Or we respect the infinite diversity of humanity, that we are flawed and all going to fuck up several times, and we cut some slack for those who are sorry when they fuck up.

Yeah, and throw in some snark when the despair gets up to the throat. 

*To those who are tired of the shit being constantly thrown at them, I understand, I do, and I respect your right to throw it back. It's the human condition. I wouldn't dream of coming onto your blog and telling you what to say or not to say--I used to do that with Age of Autism, and then it happened to me. I got the shit thrown back. Wow, that was not fun. It was soul-crushing.

I hate the thought of people having shit thrown at them, of having their souls crushed, their spirits stomped on. I hate that it happens to so many of us so many times a day. We are all walking wounded, and I would hate to hurt another.

So wear taupe and scream and rage because you have that right. And somebody's got to hear you--got to get that the rhetoric of fear hurts real human beings.

My children are not tragedies and do not need to be cured or prevented. They need to be acknowledged as precious, valuable human beings who deserve respect and concern and provided the tools to overcome their challenges or work around them. As do we all.

Vonnegut often failed to live up to his ideals, but that doesn't mean his ideals weren't right: 

"There's only one rule that I know of, babies—God damn it, you've got to be kind."

14 comments:

farmwifetwo said...

If we actually go by the numbers that get tossed out daily on the news etc... We're all going to die tomorrow of something and we're all "disabled". Truth is many of them overlap and most isn't science at all but questionaires and statistics that are unbelievably easy to manipulate and exaggerate. So... I now simply ignore them.

We're doing "the flag" in our Munic and I'm not going. Why?? B/c the "whereas" proclamation is bull... sh...it. Autism Ontario - that ABA is grand group - makes certain that in it is says "we are the best". I can't respect that since I don't respect the organization. I'll send the proclamation to you... it's crap.

As for the adult autistics... the more they wish to take the low road instead of the high road, the less they want to be part of the process and instead the screaming, nagging portion... the less respect they get. See people are tired of special interest groups and thankfully, more and more these last 12mths or so I have notices a huge change in attitudes online especially in news sites. Nobody listens anymore to them... nobody respects the screaming anymore.

Maybe it's time to listen to others and be part of the process, instead of ignored. It's much easier to respect those that are doing their best - like the family we went to a b-day party at on Sat (ALL of them - adults and children - are developmentally delayed and they work, don't complain and take pride in their achievements) than complaining about how hard done by you are. It is hard... but that's the way life is.

Neurodivergent K said...

If you read the post, we said 1 in 49 people LACK AUTISM.

Not are neurotypical.

I've been promoting neurodiversity-is-all-neurodiversity for over a decade. Give me some effing credit.

Anonymous said...

Hi, I like your blog a lot. But I am much more of a lurker than a comment-er. I liked this post because I think that we divide ourselves too much in the world and that everyone is so busy fighting that nothing really happens. Nothing, no matter how much we try to convince ourselves otherwise. I read the other post that you mentioned and thought it said that 1 in 49 were not autistic and therefore needed the taupe ribbon-with the googly eyes because of the need of non autistics for eye contact. I thought it was all about autism too. Now you see why I hardly ever comment on blogs. I am afraid of misunderstanding and than being cussed at. But I liked this. Thank you.

kathleen said...

I hate to tell you-but I believe that the brown ribbon is already taken for colo-rectal cancer awareness (I am not kidding!) Yup..be who you are and respect other people for being who they are. Way too much yuckiness in the world as it is..

chavisory said...

I think this is an unfair criticism to make towards the "Tone It Down Taupe" campaign, which is NOT using the term "neurotypical."

In fact, "neurotypical" has been slipping out of use as the default word for non-autistic, at least in my corner of the autistic community, for quite a while now, largely at the behest of autistic people who also have some other neurodivergence.

I would also dispute that this is the prime point of contention between autistic advocates and non-autistic autism advocates. I'm not even sure I know or could articulate what the most powerful divide between those factions is, but I've never gotten the sense that this is it. The term "allistic" was coined by the autistic community for the very reasons you correctly note--that there are many ways besides autism to be neurodivergent. Though since "allistic" has picked up negative connotations, I more often simply use "non-autistic" when referring to the non-autistic, "neurodivergent" when referring to ANY people with a major neurodivergence whether it's autism or something else, and "neurotypical" only when referring to people truly without any major neurodivergence.

Your insightful math, though, I actually think supports the larger message of the "Taupe" campaign--that, given the numbers involved, these conditions and experiences are in fact common, normal variances on human neurology. And that when stacked together, the number of people who could truly be said to be "normal" or "neurotypical" is so low (only 50% or so) that the absurdity of how that neurological state of being is privileged and desired while all others are pathologized and stigmatized becomes manifest.

Attila the Mom said...

Oh golly, so much to think about. I'm going to digest this, take a nap and come back and read this again. Kudos!

K Wombles said...

Attila the Mom, thanks.

Chavisory, I didn't argue this was the prime point of contention between the two often overlapping groups. The Taupe campaign may not use the term neurotypical but the other campaign did and even used the numbers, too. While Judy's explanation lacks any snark and any negative connotations, Neurodivergent K's didn't, and I certainly stated that was her absolute right to convey things her way.

N.K, you wrote: "The eyes represent the incessant demands for eye contact from people lacking autism.

The large size represents the size of the epidemic. 49 in 50 people lack autism! Help us find a cause! Help us develop more effective therapies! Help us integrate those lacking autism into a functional society with autistic people!"

Given this rhetoric, I conflated the other attempts to paint neurotypicals in a negative light with Judy's benign campaign. Your following paragraph (not quoted) is more in keeping with the less inflammatory stated goal by Judy.

Given your paragraph quoted, though, it seems clear that you were either not at that moment giving thought to those who were neurodiverse and unintentionally lumping them with neurotypicals or your focus was entirely on autistic versus non-autistic.

However, I would like to point out that most of my post had absolutely nothing to do with N.K's post, but with the myth of neurotypicality and that perpetuating that myth creates an unreal divide.

K Wombles said...

My adjectives may not, probably do not convey accurately what I was trying to--I will try for clarity when I'm not on my iPad in the car.

K Wombles said...

Home again, so let me try to clarify, as I'm not trying to get into a heated argument, and am concerned my adjective choices might not reflect that.

There have been, over the last several months, posts, statuses, comments that I have read that have been directly hostile to those who have been termed "neurotypical."

I am not suggesting that Neurodivergent K has done this. The latest comment I found disturbing actually occurred by an anonymous over at Autistic Hoya that autistics needed to take over everything and basically put neurotypicals in their place.


Of course, I don't think that kind of rhetoric reflects most autistic people's beliefs anymore than I think most neurotypicals are flaming assholes who want to eliminate autistic people. I admit I could be wrong (and none of this should be construed as accusing Neurodivergent K of having any of these opinions as I am not).

Also, in case it wasn't readily apparent, I do not identify as or with neurotypical.

Autism Awareness month, if the autism organizatons controlling the month were really interested in what autistics thought and felt, would change it to Autism Acceptance, but then that would pull the rug out from under their fundraising efforts. And people would be pissed at them anyway for co-opting the term from the autistics who already have Autism Acceptance Month.

I have a feeling that the division won't be solved short of the Autism Speaks and all other major autism organizations not led by autistic individuals closing their doors.

However, that was another digression, so let me get back to point:

Let us stipulate that there is an elusive minority of neurotypicals out there (42-44%). In adopting a policy of embracing neurodiversity, those supposed neurotypical must be included within the neurodiverse, right?

All neurologies are valuable and worthy of appreciation and understanding, right?



Neurodivergent K said...

The point of the tone it down taupe! campaign is to

a) tone down the rhetoric. Breathe. We're all gunna be ok.
b) "help people lacking autism integrate with autistics". Which is just another way of saying "support needs". "Working together". It's very much a neurodiversity-as in all neurologies, thank you I have been valuing all neurologies for ever-campaign.
c) Anyone who feels defensive about being a ribbon? Um. Maybe they should try on that empathy and think about how having a whole month dedicated to telling the world how tragic you are is. This is hanging a lampshade on it. Cuz, seriously, it has googly eyes.

Do not tone police me, Kim. You understood what I was saying, as has everyone who has read the post (unless there's a vast silent group out there going 0.0). Trying to tell someone with language disabilities that their language use isn't ok when clearly they're making sense is uncool. And do not use me as an example of something I didn't even say. That's unacceptable behavior. If someone said something you object to, find examples of that. Don't link to me and claim I said shit I didn't say.

K Wombles said...

I've been reflecting on your last comment since I approved it, weighing how to respond in a way that was constructive (although I thought my above comments were, so what the heck do I know?).

I've rewritten and revised my comment a half dozen times now. Do I take your comment point by point? Do I focus on areas of disagreement? Do I leave it alone, not comment?

Sigh. My post was not meant to be an attack. It was not meant to be addressing tone, either. I thought I made that clear.

My knee jerk reaction is to be snarky, to be honest. After all, it's clear that there was snark in your piece, specifically in the paragraph I quoted in a comment above, but perhaps I am mistaken. Perhaps very little is clear at all when we choose to go below and beyond the specific words used. That is the problem with text--we bring ourselves, our mood, and our day into what we read, and that all impacts what we read into pieces.

I'm not going to do that--respond snarkily or angrily (and I'm not tone policing here--you have every right to feel whatever you are feeling and to convey that). I'm going to give your comment serious reflection.

Having seen Judy Endow's fb status about the campaign and yours on your blog's FB page this evening, the campaign does not appear to be snarky, and Judy did not appear to have in mind the rhetoric of the paragraph I quoted of yours. However, I saw your post first and read it on the heels of your prior posts, and that directly colored my reading of today's post.

Again, let me acknowledge that I obviously conflated the inspiring neurotypical meme and the taupe campaign, and that this happened because I gave undue emphasis to that specific paragraph of yours, which was not in the same tone as the rest of your piece. I apologize for that conflation. I have, here, in this comment, hopefully sufficiently fleshed out my above statement (prior comment) so as to be clear that I recognize this.

Let me go further and state that I apologize for this conflation and for any confusion that it might have created for anyone and any harm it might have caused you.

At this point, unlinking to your post would be unfair as it would appear to remove my ownership of my own words and actions. Words need to be left in place.

I will, though, add to the piece that readers should see the comments for our exchange, and as always, make up their own minds.






Stephanie said...

I tried to do the math, but "luckily" for me, I was working with the word "normal" to make a point, and therefore the categories were easy to classify and numerate. Still, it was a difficult process.

The end conclusion, either way, is that "neurotypical" and "normal" are not real, but idealized concepts. Humanity is diverse from skin to core. The sooner we accept that the sooner we can make this world a better place for everyone, regardless of the nature of their points of diversity.

Rachel Cohen-Rottenberg said...

If the other campaign you're talking about is the counter-inspiration-porn campaign I did in February, that campaign didn't use the word "neurotypical" either. It used the word "normal," and it used it for satiric purposes. The whole point was to parody the very idea of normal -- not to suggest that there is some sort of strict dividing line between disabled people and the rest of humanity. In fact, that was the whole point: there isn't that dividing line. I was parodying the fact that people don't get that, and that they divide the world up in ways that marginalize and stigmatize.

The memes I've been doing now do use the word neurotypical, and for a similar reason -- it's to parody the extreme, simplistic, black-and-white thinking that pervades autism awareness campaigns. Parody, by its nature, works in extremes. Otherwise, it wouldn't be parody. So if I turn a statistic on its head, I'm parodying the oversimplification inherent in the statistic and the ways it's used. Arguing whether the original statistic is right or not go against the whole point of the parody.

K Wombles said...

Honestly, several things come to my mind when considering parodying.

1. While I get the point of satire and dark humor quite well and think that these can be powerful instruments of social change, I have my doubts that parodying can.


2. If you're parodying just to point out that others are black and white thinkers and extremists, you've done a thorough, bang up job. Since they are so black and white in their thinking, it's probably going to go right over their heads that you're pointing out there's no such thing as a dividing line between normal/neurotypical and neurodiverse. I have to admit, I completely missed that. Must be because parodying doesn't come naturally to me.

3. If the intent of the parodies is to have a bit of fun and let off steam, it looks like it's a success, at least from all the facebook shares and comments. It's obviously been a great way to create solidarity and kinship.

4. If it's to reach out to other people in the disability community and get them to reconsider simplistic thinking and how they talk about those with disabilities, I wonder how well that will work.

I guess it boils down to intent. But maybe intent doesn't matter, since people will see in it what they want to, no matter how we try to convey our intent.

Parodying is obviously not my cup of tea, but it is yours and one you are well skilled at. I hope it accomplishes whatever you want it to.

What a wonderful thing that there is enough room for everybody in the disability rights movement and the kind of advocacy that works well for each person.