The Art of Understanding

New Blog

2009-01-27T11:09:00.000-08:00

After a hiatus, I've decided to continue blogging under a different title. "The Art of Understanding" was originally coined as a play on M.J. Carley's and Alison Singer's "Articles of Understanding," and the first posting on this blog discussed that collaborative essay. When I wrote that posting, I was still hopeful that MJC could be reasoned with; I have since abandoned that idea. Much has happened since then, which as of now, remains un-discussed on this blog. Suffice to say, I now wish to distance myself from any association. (I may come back here should I decide to ever revisit the topic, although that now seems unlikely). In the meantime, this blog remains accessible because of other material it contains.

Please visit my new blog entitled "Autistic and Gay" at:

http://autisticandgay.blogspot.com

Or click on "view my complete profile" and follow the links.

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Victory! The End of the Ransom Notes Campaign!

2007-12-19T16:26:00.000-08:00

Yes, it's true. I'd like to extend my personal thanks to all those who helped make this possible. I can't begin to describe how wonderful this feels.

Here is the announcement from ASAN:

Hello everyone,

I am pleased to inform you that this afternoon the NYU Child Study Center announced that they will be ending the "Ransom Notes" ad campaign in response to widespread public pressure from the disability community. You can read that announcement here. The thousands of people with disabilities, family members, professionals and others who have written, called, e-mailed and signed our petition have been heard. Today is a historic day for the disability community. Furthermore, having spoken directly with Dr. Harold Koplewicz, Director of the NYU Child Study Center, I have obtained a commitment to pursue real dialogue in the creation of any further ad campaign depicting individuals with disabilities. We applaud the NYU Child Study Center for hearing the voice of the disability community and withdrawing the "Ransom Notes" ad campaign.

Twenty-two disability rights organizations came together to ensure the withdrawal of this advertising campaign. Our response to this campaign stretched continents, with e-mails, letters and phone calls coming from as far away as Israel, Britain and Australia. The disability community acted with a unity and decisiveness that has rarely been heard before and we are seeing the results of our strength today. Our success sends an inescapable message: if you wish to depict people with disabilities, you must consult us and seek our approval. Anything less will guarantee that we will make our voices heard. We are willing to help anyone and any group that seeks to raise awareness of disability issues, but those efforts must be done with us, not against us. This is a victory for inclusion, for respect and for the strength and unity of people with disabilities across the world. It is that message that has carried the day in our successful response to this campaign. Furthermore, we intend to build on this progress, not only by continuing a dialogue with the NYU Child Study Center and using this momentum to ensure self-advocate representation at other institutions as well, but also by building on the broad and powerful alliance that secured the withdrawal of these ads in the first place. We are strongest when we stand together, as a community, as a culture and as a people.

Thank you to all of you who have made this victory possible. Remember: "Nothing About Us, Without Us!"

Regards,
Ari Ne'eman
The Autistic Self Advocacy Network, President
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

My Letter to NYU

2007-12-13T07:57:00.000-08:00

I finally was able to write my own letter of outrage. It's not too late for others to do the same. In fact, it's important now that we keep the pressure on. They're starting to give a little, but if we don't continue to demand that the ad campaign be pulled, they might assume that we've been appeased by their small gestures.

Here is the letter I wrote:

I’m writing to express my strong objections to your new “Ransom Notes” advertising campaign. I believe these ads are offensive and counterproductive.

I’m encouraged that you’ve updated your website by including an explanation in which you describe the campaign as a “provocative wake up call,” you acknowledge that it “may be shocking to some,” and you express a desire to “generate a national dialog.” However, this preliminary gesture on your part is not enough; it does not diminish the harmful effect this these ads will have.

Most of the people who will see your ads will not take the initiative to go to your website or anywhere else in order to learn more about these conditions. Those exposed to your ads will be left with an impression that children with ADHD are a “detriment to themselves and those around them,” and that people with the form of autism known as Asperger Syndrome live in “complete isolation,” just to give two examples. The people exposed to your ads might include employers who will now think twice before hiring someone with one of these conditions. Those who read these ads might now be reluctant to befriend someone with one of these conditions.

As someone who identifies with two of the conditions you’ve targeted, I struggle all the time balancing the need to be open with others about who I am, with my fear that that openness will lead to discrimination in my daily and professional life. Your ads will only drive people like me further into the closet.

Furthermore, it’s my understanding that these ads were never tested on the people affected by these conditions. By treating us as bystanders whose opinions are unimportant to you, you’ve insulted and deeply wounded us.

A few years ago, I volunteered without pay at the NYU School of Medicine in an experimental AIDS vaccine trial. I did so in the hope that one day I and others could live our lives without the fear of contracting that devastating illness. I did it because of what I believed in.

I am writing this letter now because of what I believe in.

As I wrote above, I’m encouraged that you seem to be responding to the national and international outrage generated by your ads. However I do not believe, as you say, that “The strong response to this campaign is evidence that our approach is working.” Rather, your response is evidence that our letter-writing campaign is working. Please be advised that we do not intend to stop applying pressure, and doing whatever else is necessary, until this misguided ad campaign is pulled.

NYU's "Ransom Notes" Campaign

2007-12-12T21:23:00.000-08:00

The Child Study Center at New York University recently announced it will be launching a new ad campaign in the form of "ransom notes." You can read about it here.

This offensive campaign has sparked worldwide outrage. Among other things, they promote the idea that ADHD children are a detriment to themselves and those around them, that children diagnosed with Asperger Syndrome are destined to live in complete isolation, and that autistics will never be able to care for themselves. Please read the information below, and then sign the online petition:

More here:
http://autisticbfh.blogspot.com/2007/12/held-for-ransom.html

Hello all:

The following letter was mailed and hand-delivered to the NYU Child Study Center on December 11th, 2007. It is co-signed by fourteen premier disability rights organizations, including ASAN, ADAPT, TASH, ADA Watch and the National Coalition for Disability Rights, the Autism National Committee and many more. In it, we urge the Center to withdraw its offensive "Ransom Notes" advertising campaign, which stigmatizes people with disabilities and misinforms the public. As some of you have already heard from our previous communications on this topic, the advertising campaign is expected to garner 700 million impressions over the next four months, requiring us to act quickly to stop grave damage to the public perception of people with disabilities.

As several others have indicated an interest in joining our statement in response to the "Ransom Notes" advertising campaign, we are encouraging organizations to issue letters endorsing the joint statement and send them to the supporters of the "Ransom Notes" campaign, urging them to withdraw the offensive advertising. Contact information for all of the supporters of the "Ransom Notes" campaign is available here

on ASAN's website We will also be making available in the next day or so a petition for individuals to sign to express their support for the disability community's efforts. We urge individuals and groups to indicate their support now for the joint statement of fourteen disability rights organizations on this topic directly by contacting the NYU Child Study Center by e-mail at Harold.Koplewicz@nyumc.org... or by phone at 212-263-6205.

Thank you so much to everyone who has already written and called to protest the "Ransom Notes" campaign over the course of the past few days and for those who will do so for as long as it takes to show that the disability community will not stand for advertising that questions the humanity of people with disabilities. We will be keeping you informed as we continue to mobilize the disability community against these hurtful and unfortunate statements. Your support is what keeps the disability community strong.

Regards,
Ari Ne'eman
The Autistic Self Advocacy Network, President
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

__________________________________________________________________________

Dr. Harold S. Koplewicz, M.D.
The NYU Child Study Center
577 First Avenue
New York, NY 10016

Dr. Robert Grossman, M.D.
NYU School of Medicine
IRM 229
560 First Avenue
New York NY 10016

John Osborn
President and CEO of BBDO New York
BBDO New York
1285 Avenue of the Americas
New York, NY 10019

Richard Schaps, Chairman and Chief Executive Officer
Van Wagner Communications, LLC.
800 Third Ave 28th Floor
New York, NY 10022

To the NYU Child Study Center and the supporters of the "Ransom Notes" advertising campaign:

We, the undersigned organizations, are writing to you regarding your new ad campaign for the NYU Child Study Center: "Ransom Notes". Our organizations represent people with a wide range of disabilities, including those portrayed in your campaign, as well as family members, professionals and others whose lives are affected by disabilities. As people who live and work with disability, we cannot help but be concerned by the way your campaign depicts individuals with disabilities. By choosing to portray people on the autism spectrum as well as those living with OCD, ADHD and other disabilities as kidnapped or possessed children, you have inadvertently reinforced many of the worst stereotypes that have prevented children and adults with disabilities from gaining inclusion, equality and full access to the services and supports they require.

While the "Ransom Notes" campaign was no doubt a well-intentioned effort to increase awareness and thus support for the disabilities it describes, the means through which it attempts this have the opposite effect. When a child with ADHD is described as "a detriment to himself and those around him," it hurts the efforts of individuals, parents and families to ensure inclusion and equal access throughout society for people with disabilities. When individuals with diagnoses of autism and Asperger's Syndrome are told that their capacities for social interaction and independent living are completely destroyed, it hurts their efforts for respect, inclusion, and necessary supports by spreading misleading and inaccurate information about these neurologies. While it is true that there are many difficulties associated with the disabilities you describe, individuals with those diagnostic categories do succeed – not necessarily by becoming indistinguishable from their non-disabled peers – but by finding ways to maximize their unique abilities and potential on their own terms.

The "Ransom Notes" campaign places a stigma on both parents and children, thus discouraging them from pursuing a diagnosis that might be helpful in gaining access to the appropriate services, supports, and educational tools. The autism spectrum should be recognized for what it is: a lifelong neurological condition – not a kidnapper that steals children in the dead of the night. The devaluation of the lives of people with disabilities has led to public policies and funding decisions that have forced thousands of people with disabilities into nursing homes and other institutions. The unintended consequences of ad campaigns like yours give legitimacy to the taking away of the civil and human rights of people with disabilities.

It is true that diagnoses of ADHD, autism, Asperger's Syndrome, and OCD often accompany great hardships for families. It is true that depression and bulimia are terrible disorders that require treatment. Yet, the way you choose to convey those messages is inappropriate and counterproductive. Individuals with disabilities are not replacements for normal children that are stolen away by the disability in question. They are whole people, deserving of the same rights, respect, and dignity afforded their peers. Too often, the idea that children with disabilities are less than human lies at the heart of horrific crimes committed against them. The recent tragic instances of violence against children and adults on the autism spectrum and with other developmental disabilities are linked to the perception that these people are less than human. We – the adults, families, professionals and others affected by these conditions - assert that nothing could be further from the truth.

We are also concerned that the negative stereotypes the "Ransom Notes" campaign depicts could make it harder for the many people with disabilities and their family members who are working to ensure that students with disabilities have the right to be included in their home schools while still receiving all necessary services. Federal law mandates that students with disabilities have the right to a "free and appropriate public education" in the "least restrictive environment". Your advertising campaign claims that children with disabilities could be a detriment to those around them and as a result hurts the efforts of parents working to secure the opportunity for their children to be included with their peers.

While we recognize and applaud the good intentions intended by this effort, we must urge you to withdraw this campaign immediately, as it threatens to harm the very people whom it seeks to benefit: people with disabilities, their families, and their supporters. In the press release announcing this campaign, the Center gave as one of its goals "eliminating the stigma of being or having a child with a psychiatric disorder". We are in full agreement with the goal of eliminating stigma against people with disabilities and their families. Yet, this campaign serves to increase that stigma rather than lessen it. We hope that you will heed our concerns and those of many other people with disabilities, family members, professionals, and countless others and end the "Ransom Notes" advertising campaign.

Please do not to hesitate to contact any of the organizations listed as signatories to this letter in order to better solicit the opinions of the disability community prior to your next advertising campaign. We would be more than glad to help the Center to develop better strategies to achieve its excellent goals. The NYU Child Study Center has the potential to do enormous good for children and families affected by disability. By showing that the Center respects the views of people with disabilities, families, and professionals, you can make that aspiration a reality.

Sincerely,

Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org

Bob Kafka
National Organizer
ADAPT
http://www.adapt.org/

Diane Autin
Executive Co-Director
Statewide Parent Advocacy Network of New Jersey
http://www.spannj.org/

Jim Ward
ADA and the National Coalition for Disability Rights
http://www.adawatch.org/

Janette R. Vance
The Family Alliance to Stop Abuse and Neglect
http://www.thefamilyalliance.net/

Estee Klar-Wolfond
The Autism Acceptance Project
http://www.taaproject.com/

Barbara Trader, MS
Executive Director
TASH
http://www.tash.org

Jim Sinclair
Autism Network International
http://ani.autistics.org/

Stephen Drake
Not Dead Yet
http://www.notdeadyet.org/

Stanley Soden
Director of Independent Living Services.
MOCEANS Center for Independent Living
http://www.moceanscil.org/

Ethan B. Ellis, Executive Director
Executive Director
Alliance for Disabled in Action, Inc.
http://www.adacil.org/
President
Next Step, Inc.

Phil Schwarz
Vice President
Asperger Association of New England
http://www.aane.org/

Sharisa Kochmeister
President
Autism National Committee
http://www.autcom.org

Unsettling

2007-12-10T19:43:00.001-08:00

Another Meme from ABFH

2007-09-22T05:43:00.000-07:00

From her post, Randomness and a Meme ....

1. Is there a regular time of day when you compose your posts?

Not at all, but mornings on my days off seem to be common. Sometimes I'll continue writing late into the night when I should be sleeping. Sometimes I'll be writing when I should be getting ready for work or leaving already.

2. Do you prefer to write a certain number of posts per week (or per month)?

I wish I could write more than I do. Someone recently told me that he visited my blog and was disappointed to see nothing new. That was the first time I heard that comment, (from a stranger), and it was a great compliment to me.

3. Are you more likely to write a post when you're happy about the topic, or do you mainly blog when you feel like ranting?

I write when I'm working out a new understanding, or an old one that I've forgotten about. My best writing comes when I'm excited or passionate about a topic, and mostly when I'm inspired by other people.

4. Do you write from notes or an outline, or are your posts mostly spontaneous?

Spontaneous. Amanda wrote that she'll fail if she tries to write from an outline, or consciously pick a topic. I'm the same way.

5. Do you try to maintain a central theme for your blog and avoid random topics that don't fit the theme?

I think the feeling that a topic doesn't fit my theme has prevented me from writing in the past out of fear that it might not be interesting to my (small) audience. Obviously, that's not a good thing. It should also be obvious, from recent posts, that I've veered off my theme. What complicates matters, (not for me), is that alongside this fear is a desire on my part to write about things that are new for my readers.

My theme, I suspect, is rather broad, which is good because I'm trying to reach a broader audience - not in terms of numbers, (although that would be nice), but in terms of diversity. A consideration in making this blog about autism as well as GLBT topics, was that I could teach the gay community about autistics, and I could teach autistics about the gay community.

6. Are there any interesting rituals associated with your blogging?

Coffee. :-)

I'll leave this Blank

2007-08-11T01:40:00.000-07:00

I dislike email forwards. You know the kind I'm talking about: those fluffy, pseudo-spiritual, platitudinal, feel-good, syrupy sweet, dogmatic, "inspirational" siren songs. They make me want to puke. Well...not really, (I thought it was funny to see Aaron from HNY use that phrase in a recent blog posting). Usually they don't make me feel anything at all. I'm proud of the fact that my feelings are not easily manipulated by others, which is why I can see these types of email forwards for what they are. Apparently the most popular ones are written by good writers who are skilled at manipulating feelings, but lack any spiritual insight whatsoever.

I heard one recently. Unfortunately, I had to sit there while someone read it. (It took a lot of effort not to roll my eyes while listening). I don't remember much of it, but one part that stood out to me was the way the writer condemned anger. That made me angry.

I've been called an angry person on occasion, mostly by people who've never met me in person and barely even know me online. They'll usually follow that up by telling me how they wish I would get some help. That I find humorous.

I tell them I'm not an angry person; I'm a person who gets angry. There's a difference.

I'll tell you a secret: I love being angry. I find it incredibly focusing and motivating. Inspiring, even.

By calling me an "angry person," what they're implying is that there's no joy, happiness, compassion, humor, forgiveness, or any of the other "good" emotions in my life. They're wrong. Here's another secret: emotions don't cancel each other out.

Not only do I feel a full range of emotions, but I often feel more than one emotion at the same time. If it's a joy to be angry, then let me tell you how wonderful it is to be more than just angry. Feeling several emotions at the same time is downright blissful.

Let me introduce you to the concept of synergy. That's when two or more things combine to form a whole greater than, and often different from, the sum of its parts. In chemistry for instance, when elements combine, the resulting compound has properties that none of the elements originally had.

And who would have guessed that when you combine visible light of every different color, you get white light -- something without any color at all?

Admittedly, when I'm feeling more than one emotion, sometimes I can't tell where one ends and another one begins. It's like multiple emotions become a single emotion. From talking with other autistics, I gather this is common among us. The "experts," if they're willing to admit that we feel emotions, (if I don't respond emotionally the same way that you respond emotionally, then I must not have any emotions at all -- is that it?) would probably tell you this is a bad thing. They might even have a pathological/medical sounding word for it. But how could something that feels so wonderful be bad?

I suspect this ties in with another often mentioned autistic trait: the "blank stare," and I suspect that what you're really seeing there is a fullness which only appears to be an emptiness. After all, "blank" really means "white."

And I've been thinking about "bliss." And I don't think bliss is extreme joy, as some people -- the people who divide emotions into good ones and bad ones -- would have you believe. I think bliss is every emotion wrapped into One. The sadness and the joy, the anger and the compassion: ALL of it. And I think it feels like nothing you've ever experienced before.

In fact, it probably feels like nothing. When things cease to differentiate, then there's no basis for comparison. Completion is emptiness; fullness is nothing; bliss is blank.

So the goal is not to reject or disown your anger. Nor is the goal to work to eliminate sadness from your life. The goal is to experience the full range of God-given human emotions. Feel them. Own them. They're delicious, aren't they? And then integrate them.

And that's not the goal either. Integration and differentiation are equal yin and yang partners in a never ending process. If you believe in a God, this is God breathing in and breathing out.

The key to moving forward is to honor where you're at now. If you don't embrace your anger -- and every other emotion -- you'll never achieve bliss.

Thank you, Amanda

2007-08-06T18:50:00.000-07:00

I started a new job recently. Something there has been irritating me - well, a few things, actually - but one thing in particular is that my new boss seems to be obsessed with my sexuality. Any time we are together and he sees a pretty girl, he'll make a comment wherein I'm supposed to reply somewhere along the lines of agreeing that she's pretty and describing the things I'd like to do to her.

I'm not quite sure, but I believe he knows I'm gay and he's trying to get me to come out to him. I've been open about my sexuality in previous jobs, and my new boss has spoken with people whom I used to work with, so it's reasonable that he would know I'm gay.

And I've been thinking about why this situation bothers me so much, and feeling conflicted over the fact that it bothers me, because I also believe in visibility, and I believe in coming out, and I believe that being secretive about one's sexuality can be rooted in shame, and sometimes communicates the message that there's something shameful about it.

I wasn't able to frame my feelings in terms until now, after having read something that Amanda wrote:

I have a friend who rarely even reveals herself as autistic for fear that she will be asked to either tell her life story or educate parents, and be regarded as selfish and not fulfilling her natural role in society if she doesn’t do these things (and I’ve been told not only those things, but that as an autistic person I have no right to privacy and that if I believe in privacy then I must not be autistic!). When I say things like this, people think I’m against educating people about what it’s like to be autistic. I’m not, at all, or I wouldn’t do it so often. But it needs to be on our terms. Our lives are not textbooks for other people to pry open and read as they see fit. People have no intrinsic right to our lives and our self-dissections. For them to alternately insist, threaten, flatter, and wheedle us to give up those things to them is a problem, no matter how pure they think their motivations are. And anyone who does that should be aware that we can usually recognize the flattery and wheedling a mile away.

I'm impressed by how thoroughly and completely she described the issue, not just as it pertains to autistics, but to gay people as well, and to my situation in particular.

The title of Amanda's blog posting from which I quoted the above paragraph is "Shrinking us Down." She starts out describing a video she made, and how she intended it to be broadly applicable, but how others will interpret it as just applying to autistics - or even just one type of autistic. The fact that the above paragraph could also apply to gay people is further testament to the universality of her message.

Take the word "autistic" out of the quoted paragraph everywhere you see it, and insert the word "gay." It fits well - at times, amazingly well.

My life is not a textbook for other people to pry open and read as they see fit. I believe in educating people about what it's like to be gay, but it needs to be on my terms.

The 8 Random Things Meme

2007-07-28T09:18:00.001-07:00

I've been tagged by The Autistic Bitch From Hell to participate in the Meme. The rules are simple:

1. Let others know who tagged you.
2. Players start with 8 random facts about themselves.
3. Those who are tagged should post these rules and their 8 random facts.
4. Players should tag 8 other people and notify them they have been tagged.

I'm going to change it up a bit, (so sue me):

You don't have to list 8 things - that's only a suggestion. You can list as few or as many things as you want.

You don't have to tag 8 other people. You can tag fewer, more, or nobody at all.

If tagged, you don't have to reply right away; do so within your own time frame. You don't have to reply at all if you don't want to, or if you don't have the time or the inclination to, or if you don't know who the hell I am and how I got your email address. But try, anyway - it can be fun.

The people you tag don't have to have a blog. Let them figure out how to reply, if they're so inclined. Or maybe they'll start a new blog.

You don't even have to be tagged! If you're reading this, and you want to participate, then do so, and say I tagged you. Be sure to let me know!

OK, here's mine....

1. As I mentioned in a previous post, I've been doing yoga for about a year. I've been following a style called Bikram. It's 26 poses done in the same order each time. Although it's an extremely challenging workout, I found it to be an easy introduction to yoga, because of it's simplicity. Bikram is also known as "hot yoga" because they heat the studio to about 100F degrees. You sweat a lot, but I like that too.

2. I'm flexible in most places except my hamstrings. I understand it's not too hard to improve hamstring flexibility. I should be able to do a split one day, since I do have the hip flexibility for it. I can do Dandayamana-Dhanurasana, but not as fully as shown in the picture. (It's harder than it looks. It took me a year just to be able to balance like that and hold it for the full length of time). One day, hopefully.

3. I just started going to Hot Nude Yoga sessions in Manhattan, and all I can say is, "wow!" I won't try to justify or explain the nudity aspect of it, except to say that it's a step beyond Bikram in the sense that, while most gyms are pretty stuffy as far as requiring guys to wear shirts and all that, in Bikram it's pretty much expected that guys will go shirtless -- and because it's yoga, you're barefoot. I find this very liberating. HNY is even more liberating. There's a community aspect to it also, which I don't experience in the Bikram studio.

4. I can love a person without ever having met them face-to-face.

5. I've thought about posing nude for an art studio. It sounds like an easy way to make money. Never done it, though.

6. I've also been thinking about going to the nude beach. Never done that, either.

7. I've never been much into team sports. You know, the guy always picked last in gym class -- that was me. So it took me a while to admit, even to myself, that what I always wanted to be more than anything else was an athlete: either a skater or a dancer. It's too late for that now, which has been a great disappointment to me, (I'm OK with it now).

8. I also have aspirations of playing piano. Right now, I can only play one piece, a Bach Prelude in C Major, but I play it perfectly, and from memory.

9. I'm an excellent swimmer. My family had a swimming pool while I was growing up. I'm also pretty good on the diving board. I can do a straight-spined, straight-legged back flip. People tell me this is harder than tucked position, but I was never able to do it that way.

10. I'm bald-headed. I shave the rest. It's great not having to go to a hair-stylist.

11. I wear boxer-briefs. :-)

12. Probably my number one lifelong passion has been aquariums and tropical fish keeping. I've worked in aquarium/pet retail stores on-and-off since I left high school. Currently I work as an aquarium maintenance technician, which means I go to people's homes and offices and service their aquariums. Here's a picture of one of my tanks:

13. I'm also a big parrot fancier. I have 5 African greys, 3 cockatiels, and 4 blue-headed pionus. I acquired them at a time when I didn't think about the implications of owning so many, and had a different approach to "ownership" than I do today. Now that I am their caretaker, I have a responsibility toward them. Here's a picture of "Chico." I am not his first owner. I would not have named an African bird "Chico," (I'm not much for naming them in the first place.)

14. I'm well versed in astrology, having had an interest in it for some twenty years or so. I'm probably good enough to go pro, but I don't want to. Here's my birth chart:

OK, I'm tagging:

Ralph, Tony, Dirk, Greg, Daniel, and Nathan. (This list may be updated after publishing)

Everywhere I go

2007-06-30T11:44:00.000-07:00

There’s a well-known insurance company that has a very successful and humorous ad campaign. Their slogan is, “So easy, even a caveman can do it.” On television commercials, you see actors portraying intelligent, eloquent, and apparently well-educated modern cavemen, taking offense at the bigoted and prejudiced way they’re being portrayed.

In one commercial, the actor is shown in an airport, carrying his luggage. He passes by a billboard containing the ad, does a double-take, returns to look at it, stares at it for a while, and then continues on his way. The expression on his face is complex. In the background, you hear someone singing, “everywhere I go….”

I know how he feels.

We've all heard of autism by now. A large, well-funded, and well-connected organization has succeeded in making it an everyday word with their campaign of “autism awareness,” which includes bumper magnets, television commercials, and publicized fundraisers. According to them, autistics such as myself are a scourge that must be eradicated from the planet. Unbeknownst to most, they are aggressively funding research into technology which will enable us to identify autistic fetuses, and abort them before they’re born, as is currently practiced with over 90% of Down’s Syndrome fetuses, just to give one example.

I’ve come to expect nothing good from this organization. When I see a poster of theirs in a train station, or see an ad on TV from them, I feel very little. I’m already on my guard. I’ve hardened myself. I’m numb.

In fact, almost every time I hear or read the word “autism” I go into this defensive posture.

But sometimes it comes when you least expect it, in a place where you feel mostly safe, from people you never thought you had to harden yourself against.

Today, in a yoga studio that I’ve been attending, (as finances permitted), for over a year now, I read a pamphlet promoting an alternative treatment for autism. In bold letters, I read that what I am is Correctable. I read that I can Recover from being myself. I read that being different from others – in the particular way that I am different – must have a cause, and that addressing that cause can eradicate the difference.

I saw words like “diagnosis,” “disorder,” and “treatment.” If I spoke about diagnosing racial differences, or treating gender differences, or if I called homosexuality a disorder, those words would be offensive. But with autism, apparently it’s OK.

I read about specific brain differences involving the right and left hemispheres, between autistics and non-autistics – but nothing about why one type of brain is more desirable than another.

And finally, I learned that there is hope for people like me.

Yoga is supposed to be non-judgmental, supportive, and affirming. The postures are designed to put you in touch with your feelings. To open the heart. To un-harden you. To de-numb you. After class, I had a brief chat with the instructor/owner. I asked him who was putting those pamphlets there. He named a family member. I asked him if he would be willing to put out some literature offering a balanced perspective. He said he would be willing to read it.

I was shaking when I left the studio. But when people are kind and friendly and gentle, it’s hard to be angry with them. When I got home and sat for a while, I felt the familiar sensation of depression sinking in: my anger redirecting itself inward. But then I did something that yoga has helped me to do: I cried.

I don’t equate non-traditional treatments for autism with traditional methods. But I don’t consider them alternatives to each other either. For some reason, people like to divide an issue into two opposing viewpoints and then, satisfied that they know what both viewpoints are about, they’ll fail to realize that other viewpoints might exist. My yoga instructor probably thought my “balanced perspective” was something along the lines of a more traditional approach to autism.

In reality, there are many sides to most issues, but if I were to draw a single line, I would put both traditional and so-called alternative approaches to autism on one side of that line, because both of them would prefer that I wasn't born autistic, but since I am, they want to change me into something other than myself.

There is no objective rationale for saying that a non-autistic brain is better than an autistic brain; that non-autistic behaviors are better than autistic behaviors. We are different, but not lesser.

I am autistic. I have an autistic brain. I display typically autistic behaviors. I’m happy with who I am. I like being autistic. I like the way my brain works. I don’t want to be non-autistic. I love and accept myself just the way I am.

This feeling grows. I am happier and I feel more accepting of myself than I did a year ago.

I would like to think that yoga played a part in this, because that’s what yoga teaches.

New Words (Part One)

2007-06-23T19:57:00.000-07:00

What's the role of allies?

By "allies," I'm talking about those people who align themselves with a movement, and become advocates for an oppressed people other than themselves. It could be people who, while they are not members of the oppressed minority, have a strong stake in the movement. A parent of an autistic child, or a gay child, for instance wants to see their child reach their full potential, and be happy. Or maybe an ally is just someone who is sympathetic to the cause, but not directly affected by the movement. (Of course, all of us are indirectly affected by human rights movements.)

A distinction should be made between true allies and false allies. I would characterize anyone who wants to cure autistics of their autism, or cure homosexuals of their homosexuality, as not being a true ally, because such an attitude is in fact oppressive, but especially because it's not what we want for ourselves.

We have a right to inclusion and acceptance as we are now, not just to the degree which we're able to change or override our inborn and morally neutral traits.

While it's recognized that some individuals may want to change their inborn traits and, in theory, such can be a legitimate choice not imposed by society, or influenced externally, our collective voice proclaims loudly that we shouldn't need to be anything other than who we are, as we each define it.

It should be obvious that true allies need to take their cues from those of us who speak on behalf of ourselves.

Not just obvious. It should be axiomatic.

The gay rights movement is older than the autistic rights movement; the role of allies is better defined within the context of gay rights than within autistic rights. In fact, there exists a powerful gay rights advocacy group which is primarily an allies group: PFLAG -- Parents, Friends, and Families of Lesbians and Gays.

Because the role of allies to the autistic rights movement has recently come under question, I thought I would research PFLAG to see what sort of precedent they might have set. Quite interestingly, while I saw clearly expressed, and seemingly comprehensive statements of Vision, Mission, Strategic Goals, and Policy, no mention whatsoever is made of their unique role as allies within the greater GLBT rights movement, as distinct from the role of principals.

I sent an email to PFLAG which read as follows:

I'm wondering if you could direct me to some sort of published comment or statement from PFLAG to the effect of any of the following:

That PFLAG officially takes its cues from the GLBT community.

That PFLAG advocates for what the GLBT community wants, not for what well-meaning straights want for the GLBT community.

That PFLAG's role is as an ally, but not the voice of the GLBT community.

That PFLAG could not know what the GLBT community wants for itself, unless it respectfully listens to the GLBT community.

Is there anything you could refer me to that says something similar to the above statements?

Thanks

In response, I was directed to their website. I then wrote the following:

Thank you very much. I should have prefaced my question by saying that I had already thoroughly searched the website and could not find what I was looking for.

I was looking for some sort of official statement from PFLAG acknowledging that non-GLBT allies are not the voice of the GLBT community, and that in matters of GLBT advocacy, the voice of non-GLBT allies should never take precedence over the voice of GLBT self-advocates.

I am involved in an advocacy group other than GLBT advocacy, and the role of allies has recently come under some discussion. I was looking to PFLAG as a model.

I received the following reply:

We do not have any specific policy statements on this. We work to represent the voice of both allies and family members as well as GLBT people themselves. We are thankful for the role of allies and the voice that they can bring to the GLBT discussion.

If you have any other questions about working with allies, please let me know.

Let me say this now: PFLAG's agenda is wholly supportive of the GLBT community. Their website reads like a rundown of GLBT concerns and issues. Any GLBT person could get behind PFLAG's agenda, and we do.

Coincidentally, it happens to be Gay Pride month, which culminates at the end of the month with the Gay Pride Parade in its birthplace: New York City, (there are celebrations in other cities, as well). I've witnessed many such events, and some of the biggest cheers and loudest applause are reserved for the PFLAG marchers.

We love our true allies.And this is due, in no small part, to the fact that PFLAG does hear the voice of the GLBT community. Despite the fact that they don't explicitly state this. Despite the fact that the concept of how the role of allies differs from the role of principals seems foreign to them. Despite the fact that, when asked about this, they seem not to know what's being talked about.

It's simply a non-issue. And maybe that says something. Maybe it's a given that principals set the agenda for a human-rights movement. Maybe it is axiomatic.

This would certainly explain why non-autistic "advocates," (not true allies), who claim to know what's best for autistics, and who want to set the agenda for autistic advocacy in a different direction from what many autistics want, have repeatedly and vociferously tried to discredit principal autistic advocates by saying that they must not be autistic. It would also explain why it's in the best interest of false allies to claim that "true" autistics cannot advocate for themselves in any capacity, or why false allies act as if adult autistics -- advocates or not -- simply do not exist, and to promote that as a reality through misleading data, systematic exclusion, and other means.

Intrigued, I further emailed PFLAG the following question:

Thank you very much for your reply. I have other questions.

I strongly suspect GLBT principals are actively involved in PFLAG at all levels. Could you verify this?

Are GLBT principals excluded from any PFLAG sponsored activities? For instance, a support group for parents of gay children - are GLBT people absent? (I'm not necessarily talking about active exclusion).

Your time is most appreciated.

I'm awaiting a reply....

D-Words, I-Words, and S-Words

2007-03-01T22:32:00.000-08:00

Amanda posted some really good links pertaining to the social model of disability.

I have to confess that it took me a long time to own the term “disabled.” The only definition I knew for the term was a medical one. I rejected the idea that I was inherently (medically) disabled. I knew that my differences were not flaws; I didn’t “suffer” because of them, and any difficulty I encountered was dependent on a social environmental context. Without realizing it, I had owned the social model of disability.

Looking back, definitions also account for the fact that it took me a long time to own the term “autism.” I didn’t reject it once it came to my attention that it could apply to me; it just hadn’t occurred to me because I, like most of society, held a definition of autism as intrinsically impaired. Sadly, definitions such as these account for the fact that people who carry the label of autism since childhood often see themselves as impaired. They modify their self-image to accommodate the negative definition, (and to accommodate the way others, including loved ones, see them), rather than challenge the negative definition as non-conducive to a positive self-image. It’s one of the reasons I’m glad I wasn’t “diagnosed” in childhood.

(This theme came up recently on “Whose Planet is it Anyway?”)

Calling oneself “autistic” while being uncomfortable with calling oneself “disabled” is not rare. I suppose a lot of it has to do with being able to reject medical definitions of autism, while not fully rejecting medical definitions of disability.

Of course, those autistics who distance themselves from disabled people are not alone in the social milieu. Recently, someone who was uncomfortable with comparing homosexuality with disability said to me that gay people do not seek special accommodations, whereas disabled people do.

Such an Outlook is surprising coming from someone I knew to be politically aware and active in the gay-rights movement. I'm sure he knows that gay people have been accused of wanting special, (and therefore, undeserved), accommodations – despite that non-discrimination laws, hate-crime legislation, and same-sex marriage aim to provide gay people with the same protections, freedoms and accommodations that most citizens enjoy – equal, not special, rights.

What he doesn’t seem to know is that the same argument also applies in the disability arena. Most non-disabled people take for granted their functionality. They don’t realize the wealth of accommodations they enjoy, or the extent to which they are dependent on society, (or how disabled they would be if denied those accommodations). Many disabled people present a different set of needs than the majority, and therefore require different accommodations, but those accommodations afford no more than equal access, equal status, and equal protection.

And that’s not the only parallel between autism/disability politics and gay politics.

“Special,” like “heroic,” is a word the disability community is familiar with. One common stereotype is that disabled people are somehow special, so it doesn’t surprise me that disability accommodations are considered special accommodations, the granting of which is tolerated, even applauded on account of our special status.

Accommodations are not evenly bestowed on all disabled people, however. Those with invisible disabilities, or who manage to survive passably well on their own, find it difficult to convince others that they, in fact, need accommodations, or even that they're disabled at all. As an autistic friend of mine, who by outer appearances lives a mostly successful life, once put it, "It takes a whole lot of nerve to call myself disabled."

The nerve. To call myself disabled. To call myself special. I don't deserve it.

It seems we have another reason for rejecting the word "special," other than its condescending and paternalistic connotations: it can be used as a rationale for denying accommodations to those of us who aren't special enough, just as it's being used as a rationale for denying equal rights to gay people.

And if we take the position that none of us is special, then the idea that disability accommodations are special can be used as a rationale for denying those accommodations to all of us.

Perhaps it also provides some insight into another reason why some autistics are uncomfortable with calling themselves "disabled."

Grammar and Politics

2007-02-12T20:40:00.000-08:00

A while back, there was an online discussion on the nature of disability. Someone offered a statement to the effect that, "I'm not disabled by autism, I'm disabled by society's treatment of autistics."

It's an important distinction, and one that comes up repeatedly in autism discussions particularly, but it applies to other disabilities as well.

Someone further made the point that, "If red hair were declared to be an undesirable trait, complete with treatment protocols for red haired people, institutions, prejudice etc, then red haired folk would join the disability fold."

(Thanks, Larry - and thanks for supplying this link)

My comment was, "then why haven't gay people joined the disability fold?"

Let me insert here that I recently understood something that I've been wondering about for a while. Amanda of the Ballastexistenz blog made a comment once where she distinguished "disabled" as an adjective from "disabled" as a verb. Because it was a few steps removed from the relevant discussion, I didn't make the connection at the time, but I now realize that she was talking about "disabled" as a state of being, (the adjective), vs. "disabled" as something that's done to you, (the verb).

Recently, my local newspaper published an editorial, "What if Being Gay is in the Genes?" Here's an excerpt:

The more likely path is gentler. Science will gradually convince us that sexual orientation is innate. Condemnation of homosexuality as a sin will subside. We may come to view homosexuality as we do infertility, as a disability. The rhetoric of "acceptance" will shift from liberals to conservatives.

(Since when does viewing something as a disability make it acceptable in the eyes of the majority?)

The above editorial came to my attention by way of an online gay discussion group. Someone there called it "troubling" to compare homosexuality with disability. He suggested that the "gentler path" would be to view homosexuality the same way we view "handedness," (right-handed vs. left-handed orientation) -- as "no big deal." My comment in response was simple: "I don't want to be viewed the way we view disabled people. Thing is, most disabled people don't want to be viewed that way either."

"Disabled" as a verb doesn't mean something that was done to you and now you're disabled, (the adjective) -- it's ongoing. The implication is that when society stops disabling you, you stop being disabled.

Let me draw another distinction here. Disabling can be the active kind, based in fear, prejudice, or even loathing. But then there's the passive kind: a bias based in the fact that we're a minority: our needs, desires and style of thinking or being are not considered by the majority, and indeed may not even exist in the minds of the majority. As an example, consider how disabling it would be to live in a country where you can't speak the language -- no hostility is implied. Passive disabling is less verb-like, but it's still entirely contextual. It's also less visible than active disabling, and it's less clear where the responsibility lies.

Left-handed people are either disabled, or it's no big deal, depending on the context. In fact, they have been actively disabled in the past.

Apparently, the person who found it troubling to compare homosexuality to disability, and the author of the editorial, who suggested disability was innate, don't understand the social model of disability. One answer to the question of why gay people would never join the disability fold is suggested: maybe there's some prejudice going on here.

The Politics of Dancing

2007-01-17T16:14:00.000-08:00

Watching and listening to Amanda's "In My Language" video made me think of this song.

THE POLITICS OF DANCING

(chorus)
The Politics of Dancing
The Politics of Ooh Feeling Good
The Politics of Moving Uh Ho
Is This Message Understood?

EDIT:
Since the YouTube video is no longer available, I've removed the link. This should facilitate faster loading for those who still use dial-up, as pointed out by Ralph. "The Politics of Dancing," was a song that came out sometime in the eighties by an Australian band called Re-Flex.

More Stuff They Said

2007-01-13T21:21:00.000-08:00

Recently, on an autism advocacy online message board, a thread entitled "blogging" came up, where I tried to get my thoughts across by talking about the "cliquishness" of the autism advocacy community. It probably wasn't the best word choice, and the thread eventually evolved into a discussion wherein someone advised me that...

"It's content though that makes a blog interesting, and that's what brings in the traffic, if you are interested in getting lots of visitors. Looking like you are desperate for traffic is kind of offputting to me."

Point taken. I responded that it's not so much the traffic I crave; it's the feedback.

Maybe one day I'll write about the importance of feedback for autistics. Or in my case a hunger for it, (why are non-autistics polite enough never to tell you what they're thinking when what they're thinking is exactly what I need to know?)

But upon further reflection, it's not even feedback that I'm looking for here. After all, I've been online for, oh, maybe a decade now. I've done the message board thing -- even ended up starting a few myself which I still moderate. And the thing I love about message boards is the instant feedback.

I've been doing this long enough that I know how to write in order to come across in the way that I want to come across. I've learned how to modulate my extremes. Maybe one day I'll also write about the quantum leaps and bounds I made in my communication skills since I got a computer and started interacting with people online. And that was when I was in my thirties - long after most people learn how to communicate.

Computers and computer access change autistic lives. (Bill Gates, philanthropist, co-chair of the Bill and Melinda Gates Foundation, and suspected autie, are you listening?)

No, it's not the traffic, or the feedback. It's the prompting.

I hope to soon be able to have a self-sustaining blog -- meaning that enough people will comment here that I won't need to go outside of the blog for inspiration. And by inspiration I'm not really talking about the same kind of inspiration that other writers -- who may write about current world events, celebrity gossip, or whatever -- look for. I'm not looking for ideas. I have plenty of ideas in my head; I just don't always have the language for them; I don't have the framework to make them concrete.

Seeing someone else write about something often gives me what I need to take an idea I have and put it in writing.

And today's lucky...recipient?...subject?...what's the word?...is, once again, Amanda, who from what I gather, does the same thing in having lots of ideas and then gets the prompting, etc.

I'm going to focus on one teeny-weeny snippet from "Politics, Ethics, and Mental Widgets:"

"In the end, it’s also the mental-widget approach to politics that convinces a lot of people that they are too simple, dumb, or outright too ethical, to be political, even as they do things that are incredibly important politically. It’s not that intellectual sophistication never has any place in politics, but it’s not a prerequisite for being political, either..."

Quite. (Ironic this coming from someone whom I most respectfully consider one of the most intellectually sophisticated among us.)

In same autism advocacy discussion group I mentioned above, the topic of Mercury-induced autism came up once again, and how we really need to put that bogus theory to rest so that we can focus on important stuff, like what are we gonna do if they ever come up with the technology to detect autism, via a genetic signature, in utero, and start aborting autistic fetuses, (and who knows who else -- gays maybe?), like the way we now abort over 90% of Downs Syndrome fetuses. (In the same vein, I've been circulating the Petition to Steer Autism Funding among gay discussion groups that I'm a member of because, really, they have a stake in this too.)

(I just read something on the same topic from ABFH on "Whose Planet is it Anyway?" where she makes some important observations, including the need for research to slow down long enough to let ethics catch up.)

On that autism advocacy message board, I suggested that what we're going to do is adapt. I took some flak, I think, because in trying to sound optimistic, I might have come across as sounding like I support genetic pre-natal testing for autism. Which I don't.

But this self-identified autistic, who really doesn't see a need for getting a formal diagnosis because, what would I do with it? It's not like they're clamoring to provide services to autistic adults. And anyway, going to the people whose model of autism I disagree with and seeking out their permission to call myself autistic is giving away too much power, in my opinion. Where was I? Yes, if and when they ever develop a genetic test for autism, this self-identifed autistic is prepared to finally get himself tested and then go on Imus or Oprah or wherever and say, "I am what you want to abort."

Maybe I'm being dramatic here; it's not about glory or recognition; it's about personal responsibility. It's about avoiding the kind of thinking that, for instance, makes people say, "Why should I bother voting? It's not like my one vote will ever make any difference."

What it comes down to is having the courage to step forward. What it comes down to is visibility.

I'm talking about visibility as a political tool, the same way the gay community, who coined the phrase, "coming out," use the term, a term which is closely tied in with another political term also coined by the gay community: Pride.

Visibility makes an eloquent, implicit political statement.

Being heard, on the other hand, or making explicit political statements, has drawbacks. It's easy to ignore them, and it's easy to rationalize arguments against them.

Visibility is not as easily ignored, and implicit statements bypass rational resistance.

It takes skill to make an explicit political statement. And it takes intelligence to understand it. And even with a skilled orator, and an intelligent audience, the message is still easily confused. But most importantly, when you depend solely on being heard, you can never achieve the numbers required to impact public perception, since few of us have the skill required, or as Amanda calls it, the intellectual sophistication, to make explicit political statements.

The paradox is that, while visibility requires personal responsibility, it lends itself to acting collectively, because it doesn't require any special talent to be visible. And that's what makes it the single most powerful political tool we have.

Addendum: Please read the comments section -- it clarifies and expands on some of the ideas introduced here.

What They Said

2007-01-10T19:08:00.000-08:00

I tried to write this a while back, but never got to finishing it. Something on Amanda's blog prompted me to take it up again. It seems The Autistic Bitch From Hell, (another blogger - not Amanda), wrote a blog entry entitled, "The Freedom to Make Mistakes" -- a really nicely written essay about the drawbacks of over-protecting autistics, specifically the growing practice of applying for lifelong guardianship of one's autistic children. (Amanda then took up the topic and wrote her own entry).

On ABFH's blog, Attila The Mom commented in favor of guardianship.

I guess I fall somewhere in-between.

The post I had originally intended to write was about pop star and "American Idol" runner-up, Clay Aiken. At the time, there was a lot of media gossip about a controversy concerning Clay, Rosy O'Donnell from "The View," and Kelly Ripa of "Live with Regis and Kelly." I won't go into the details too much except to point out that whenever they talk about Clay, invariably the subject of his sexuality, and whether or not he is gay, comes up.

What we also know about Clay, though, is that he has a history of working with autistic children, and after he became a star, he founded a non-profit foundation to benefit children with disabilities.

What I think of Clay, and what nobody is talking about, is that he himself may be on the autistic spectrum, because he seems to display many autistic traits.

Back to his sexuality: it seems that, in a television interview, Larry King directly asked Clay if he was gay.

Clay is a young guy. If he were really young, say like fifteen, nobody would be asking him if he were gay. It would be an inappropriate question. But since he was over eighteen at the time, aside from it being a rude question, nobody considered it inappropriate the way it would be for a minor.

Clay's autistic status aside, it got me thinking. If you wouldn't ask a fifteen year-old non-autistic "are you gay?" then, for the same reason, you probably shouldn't ask an autistic in his very early twenties the same question. And I think there are probably other cases where the common practice, (at least in the United States), of treating a person as an adult at eighteen shouldn't apply to autistics.

Let me say here that I don't see any practical way of implementing different standards for autistics -- or supposed autistics. And given a choice between treating autistics the same as non-autistics, or applying a standard that autistics should never be treated as adults, I side with Amanda and ABFH.

However, Amanda, ABFH, and ATM, talked about a practical situation where standards are being applied. And what I'm wondering is, why the dichotomy? Why, on the one hand, guardianship until eighteen, (as currently practiced for all children), or on the other hand, lifelong guardianship? How about something intermediate -- say, guardianship until twenty-five? Or how about giving autistics the power to challenge guardianship when they feel they're old enough to make their own decisions?

(I originally intended to go a lot more into Clay Aiken and his foundation. Do read the links. Clay sounds like a friend of autistics, and a potential ally.)

A Weird Synchronicity

2007-01-01T20:40:00.000-08:00

I was reading the lastest post on Amanda's blog, Ballastexistenz, where she does kind of an end-of-year thing and lists her favorite postings from each month of the previous year. I've only been avidly reading her blog for the past several months; before that I would only read it once in a while, because I didn't consistently have internet access. (If you don't know Amanda's blog, it is absolutely a must read for anyone interested in autism and disability politics, and while we're at it, I also regularly read Autism Diva - another must. I know I should link these blogs on my homepage - just haven't gotten around to it.)

Anyway, her favorite post for January of 2006 was It’s What They Train Us Into, Not Just How They Train Us. I hadn't read it before, so I clicked on the link. In it she talks about the importance of solitude for autistics, and the guilt many of us feel for this. I was wearing headphones and listening to a DJ mix on CD. I realized that the song playing at that exact moment was Alice Deejay's "Better Off Alone." Even without the synchronicity, I'm struck by the eerie connection the song seems to have to autism, (makes you wonder about the people who write these songs).

Better Off Alone

Do you think you're better off alone?
Do you think you're better off alone?
Do you think you're better off alone?
Do you think you're better off alone?

Talk to me...ohhh, talk to me
Talk to me...ohhh, talk to me

Do you think you're better off alone?
Do you think you're better off alone?

Do you think you're better off alone?
Do you think you're better off alone?
Do you think you're better off alone?
Do you think you're better off alone?

Talk to me...ohhh, talk to me
Talk to me...ohhh, talk to me
Talk to me

Follow up to "Anybody Out There?"

2006-12-25T09:45:00.000-08:00

I fixed the problem with my blog, so now comments will post as soon as they are sent. Apologies to anybody who posted a comment and thought it was rejected. And thanks for your comments!

Anybody Out There?

2006-12-16T20:36:00.000-08:00

I mentioned to a friend that I wished some people would post comments here. She told me it's hard to comment when you agree. I suppose that means it's a good thing that nobody has commented yet. But still, I'm wondering if anybody besides her is actually reading my blog. I see that my profile has gotten some hits, so I guess people are curious who I am.

Anyway, I thought I would do a "roll call" of sorts. If you're here and reading this, and you wouldn't mind, please post a comment to this. You needn't say much; just a simple "hello" will do.

Maybe this will serve the double function of breaking the ice.

The "Non-Communicative" autistic

2006-12-13T19:41:00.000-08:00

In a previous blog entry, I talked about the myth of the "non-verbal" autistic, and how "nobody knows what they're thinking/feeling." A lot of autistics have been trying to dispel this myth. It seems people are listening. They're willing to concede that some autistics communicate through non-verbal means.

Now we're hearing about a new kind of autistic: the "non-communicative" autistic. Apparently, people are not willing to give up the cherished idea that it is impossible to know what some autistics are thinking or feeling.

Communication implies reciprocity. It implies an awareness of the impact one is having on others, or at least an attempt to impact others, whether successful or not. Even if the "non-communicative" autistic does exist, that doesn't mean nobody knows what they're thinking or feeling. It doesn't mean that they don't act a certain way when they're happy, or when they're sad. It doesn't mean that you can't read these and other simple emotions, and other even more complex emotions and thoughts through overt or subtle cues.

So, you can't really say that nobody knows what "non-communicative" autistics are thinking/feeling.

What's next, the "non-expressive" autistic? It seems the group of autistics whose thoughts and feelings are impossible to know is getting smaller and smaller, and closer and closer to the realm of fiction.

From Morrison back to Morrissey and More Monsters

2006-12-13T18:02:00.000-08:00

More thoughts bouncing around in my head....

The objective of art is self expression.

The definition of art is that which evokes a response independent of its intent.

Art is like an ink blot test. The way an individual interprets it says more about that individual than it does about the original artist, (though we often credit, or blame the artist).

Both creatures, (a product of creation), and works of art, (another product of creation), are entities in their own right. They have, or appear to take on, a life of their own.

To build, as discussed in a previous blog entry, is to put the parts together to form a whole, according to a pre-determined plan.

Creating and building, as described here, are archetypes: like Yin and Yang, they're intellectual abstractions which don't truly exist in the real world in their pure form. Creating sometimes involves a little planning. Building sometimes brings about unforeseen results. But to inject too much planning into the creative process is contrivance, which is a bane to creativity. To build without following a clear plan, or without knowing what the end product will be, is to risk monstrous outcomes.

It's inaccurate to use the contradictory terms "creature" and "monster" interchangeably. Monsters are never created. They're artificial constructs. Or they're fictional.

To "spawn a monster" is also inaccurate and contradictory, since to spawn - a term usually used only when referring to "lower" life forms - means to reproduce, which is a creative process. But both terms, "spawn" and "monster," go together somehow, because they're used to denigrate, and both can be reflective of bigotry when so used. Calling a person a monster, in this context, is reflective of bigotry. Considering something that spawns to be beneath oneself is also reflective of bigotry.

Not that I think Morrissey is a bigot. I see "November Spawned a Monster" as a many-layered satirical commentary.

But that's my interpretation.

Ah. Art. It's so evocative.

Monsters and Creatures

2006-11-15T21:44:00.000-08:00

Often, when I'm perseverating on a song, I won't know where it came from, and interestingly, I'll go to bed and wake up with the same song still playing in my head. I've been stuck on "People are Strange" by The Doors for at least a couple of days now. It seems to fit a certain theme which has emerged on my blog lately: songs for autistics.

People are strange when you're a stranger
Faces look ugly when you're alone
Women seem wicked when you're unwanted
Streets are uneven when you're down
When you're strange
Faces come out of the rain
When you're strange
No one remembers your name
When you're strange

I recently had a discussion with Ralph Smith where he talks about the neutrality of art, and how this parallels objectivity in science. I think art, true art, is certainly neutral, in that it is open to audience interpretation, and different people can come away with different interpretations, but that's what makes it subjective, and unlike science, which presumes an objective truth beyond anybody's interpretation. And that's why Morrissey can use the word "ugly" in a song about a girl in a wheelchair, and some people might get offended by that, and some people might take it to mean something altogether different. Jim Morrison uses the same word to describe people reacting to someone who's strange, (at least that's how I interpret it).

Not sure exactly where I'm going with this. I guess a lot of ideas in my head have been bouncing off of each other.

Art is often lumped together with creativity, and I think it's a good comparison. A creation is something that literally or seemingly takes on a life of its own, and does things that are unexpected and were never planned – and who can plan all the different ways people will interpret our art? I remember many years ago when I happened to see an artist's paintings displayed in his apartment and was awestruck. The faces seemed alive; I could almost read their thoughts. The artist was surprised when I pointed out that the clasped hands of one subject were painted in a way that exactly resembled two humanoid figures embracing.

Linear and holistic thought can be described not just in terms of what they are, but what they do. Linear thinkers put the parts together to form a whole. We call that building, and it follows a pre-determined plan. The opposite of building is what holistic thinkers do: they start with the whole and break it up into its parts, and that's creation. Even life itself begins with a single cell which divides and sub-divides.

Mary Shelley wrote a book about what happens when builders try to create: they spawn a monster, (not a creature).

I posted something about art and creativity to a message board back in June of 2002. When I re-read it just now, it differed from what I remembered it to be, but I'd like to post it again anyway:

(This was posted within the context of a discussion, not having anything to do with autism, which I have omitted. The posting had an introduction, which I have also omitted.)

Let's use your example of art and creativity. I am a highly creative person; I have expressed myself through many different art forms, so I know where art comes from. Art comes from need.

Consider primitive art: Pottery, cave drawings, the beating of a drum. These weren't created as pretty things to be seen or listened to, they were functional. Pots contained, drawings and drum-beats communicated. However, I defy anybody to tell me primitive art is not beautiful.

You very wisely left out natural beauty while speaking of human-made beauty. However, I won't leave it out. The natural world is a creation, one more perfect than anything made by human hands. Yet nothing is there just to be looked at; everything has a function. A plant needs to reproduce, so it creates a beautiful flower with a fragrance to attract pollinating insects. Some say it's beautiful in spite of this, but I say it is beautiful because of this. Form always follows function, and that form is beautiful.

Creativity is the fulfillment of a need to express oneself. All art
performs this, if no other, function.

The most creative thing any human being can do is bring forth a child. Does this not begin with the fulfillment of a primal human need called sexual expression? And although we have Planned Parenthood, can you really plan it? Can you know before conception what will be its gender? Sexuality? Occupation? Very unlucky is the child whose parents expect it to live up to a predetermined ideal.

Perhaps there's a better word I could be using than need. Drive? Inspiration? Urge? Maybe the confusion lies in the fact that unlike the need to eat and drink, creativity is not an emptiness waiting to be filled, but a fullness waiting for release. Whatever the best word may be, it is clearly not idealism.

To me, creativity and idealism are antithetical, (despite the fact
that art can express idealism). Creativity, at its most honest and inspired, considers not how it will be received. It is purity of
self-expression, undimished by self-analysis. It is deeply personal and highly subjective.

Idealism, on the other hand, presumes an objectivity; there's a
universality to it. It's not just about what's good for me, the
nature of an ideal is that it should be good for everyone, otherwise it wouldn't be ideal. Therefore, idealism must be solidly grounded in a real connectedness: an awareness of, and responsiveness to, the needs and wants of others: Empathy. Without empathy, idealism is, at best, an ivory tower. At worst, it's fascism.

Furthermore, since nobody really knows what's best for everybody, an ideal should be something you work toward, making adjustments along the way, not something you begin with. Beginning with an ideal leaves no room for compromise or adjustment. After all, why would you change what's already ideal?

You begin with a need, not an ideal. I really think it is that
simple.

I know some will say I'm playing with words; that I'm making it a question of semantics. Others will say I'm being rhetorical, but rhetoric does not always design to mislead. Disagree with me if you must, but hear my point. Anytime someone says, "Wouldn't it be ideal if....", there will ALWAYS be someone else who'll say, "Not for me." Although it's tempting, in our arrogance, to label that person as destructive, a negative influence, apathetic, uncaring, not a team-player, or not part of the whole to which the rest of us belong, we must be willing to accept that maybe it is the ideal which is flawed. Maybe, just maybe, our ideal, whatever it may be, is not so ideal after all.

November Spawned a Monster

2006-11-11T21:39:00.000-08:00

As I was paging through two years' worth of my postings in the discussion group that I mentioned in my previous blog entry, I came across a few things that were painful to read again. But there were a few things that were kind of nice. Someone had started a discussion about Morrissey. I commented that I had heard other autistics speculate that he may be autistic. Someone, a non-autistic, thought that was interesting and remarked that he does a lot of rocking and flapping in this video:

Now I'm wondering why I never really got into him before.

I'm also reminded of a posting in Amanda's blog, (which references one of her previous posts), and some of the discussion which ensued.

Here, without comment, are the lyrics to "November Spawned a Monster"

Sleep on and dream of Love
Because it's the closest you will
Get to love
Poor twisted child
So ugly, so ugly
Poor twisted child
Oh hug me, oh hug me
One November
Spawned a monster
In the shape of this child
Who later cried:

"But Jesus made me, so
Jesus save me from
pity, sympathy
And people discussing me"
A frame of useless limbs
What can make GOOD
All the BAD that's been done?

And if the lights were out
Could you even bear
To kiss her full on the mouth
(Or anywhere?)

Oh, poor twisted child
So ugly, so ugly
Poor twisted child
Oh hug me, oh hug me
One November
Spawned a monster
In the shape of this child
Who must remain
A hostage to kindness
And the wheels underneath her
A hostage to kindness
And the wheels underneath her

A symbol of where mad, mad lovers
Must PAUSE and draw the line.
So sleep and dream of love
Because it's the closest
You will get to love
That November
Is a time
Which I must
Put OUT of my mind

Oh, one fine day
Let it be soon
She won't be rich or beautiful
But she'll be walking your streets
In the clothes that she went out
And chose for herself.

So If I Follow You

2006-11-11T21:03:00.000-08:00

One of the reasons I started to blog was to have a place where I could compile and publish some of my previous writings. The following was originally posted in November of 2004 in a local online gay discussion group which I belonged to. I liked it because it challenged the status quo in a way that, I hope, made some people scratch their heads. (In re-reading it, I’m also thinking, could I have really been that dramatic?) It has larger implications than just as applies to the gay community, and I think it highlights some of the parallels between autism and homosexuality – and some of the problems the autistic community could encounter if we’re not careful.

Someone had posted some politically correct nonsense to the effect of “the only thing that makes someone gay is whom they’re interested in romantically.” Here’s my response.

So if I follow you, you believe it's wrong to speculate on someone's sexuality based on lifestyle, appearance, or mannerisms.

I say we do it all the time, and it's only a mistake to act on our assumptions without confirmation.

You say the only indication of a person's sexuality is whom they sleep with. I say that's one big, fat, politically correct falsehood.

Now think about this:

There is a certain constituency among our GLBT population that insists on "right" behavior from others in the community. They're the ones who take out personal ads looking for "straight acting." They're the ones who insist that GLBT representation in the media or anywhere else should always be of "model" citizens – the guys and gals you would never guess are gay. Why? Because they secretly or not-so-secretly hate being associated with "fags" and "dykes."

Some take it even further. They apply social pressure to make others conform. They ridicule, and they ostracize. Beneath this is the deep-rooted assumption that others can change their appearance or behavior if only they tried hard enough. Yes, you're born gay or lesbian, but gay isn't in the pitch of your voice; lesbian isn't in the way you walk, so that part is changeable.

And all these people, the one thing they have in common, is their rallying cry: "The only thing that makes me gay is whom I sleep with!"

I'm not saying you are like this; all I'm saying is to think about it.

When I think someone might be gay or lesbian based on a certain set of physical or behavioral traits, more often than not, I'm right. I'm sorry, but if it looks like a duck, walks like a duck, and talks like a duck, I don't need to do a chromosomal analysis to know that it is a duck.

Sometimes the indicators are subtle, and sometimes they're obvious. In fact, it's obvious more often than you might care to admit. There are a whole lot of masculine women and effeminate men among the GLBT population – far more than among the general population, despite what you say.

These folks, the "butch dykes," and the "nelly fags" are punished for not conforming to an ideal. They are the marginalized of the marginalized; our bastard children. Their very existence is politically incorrect.

Professing that homosexuality is only in whom you sleep with, must deny the existence of those for whom it is far more than just that. Whether it's intended or not, it's a myth that fosters an environment of intolerance, oppression, and hatred.

Think about that.

Art of Understanding

2006-10-24T17:06:00.000-07:00

I didn’t know how to respond to Michael J. Carley and Alison Singer’s “Articles of Understanding.” I didn’t know where to start. I didn’t know what tone to adopt. I decided the most constructive way to proceed would be to simply expand on some of the ideas which were introduced, and to impart my own understandings, while minimizing confrontational language.

And I decided to start here:

“LUMPERS” VS. “SPLITTERS”

Like Michael, I like these terms, however I use them in a somewhat broader way. (I don’t know who first used these terms; I don’t know who Fred Volkmar is, and I don’t know how he used them).

A “splitter” is an inherently linear thinker: someone with a tendency to consider things separately, to note differences, to divide and sub-divide, to analyze, to discriminate. From linear thought arose the concepts of number (greater than one), sequence, hierarchy, definition, boundary, ownership, competition, etc.

A “lumper” has a holistic cognitive style: a tendency to think in wholes, to see similarities, make connections, group together. Holistic thought is broad, non-sequential, indefinite, unified, singular, macro, synthetical, boundless and synergistic. It doesn’t differentiate. Although, in describing holistic thought, it is often referred to by what it is not, (such as “non-sequential,”) this is due to a bias in our language, which is itself linear. Holistic thought is not merely the absence of linear thought; it is something in its own right. Nor is holistic thought the absence of all thought, as the linear-minded might perceive it to be.

In a person who inherently favors holistic thought over linear thought – a “lumper” – you might expect to see certain things: You might expect difficulty with language, since language is thought broken down into parts. You might expect difficulty with processing separate stimuli. Because wholeness is one-ness, you might expect a tendency toward single-mindedness; a one track mind. You might expect a tendency not to think in terms of “other-ness,” which might translate as difficulty with others, or an apparent preoccupation with self. You might expect difficulty with limits and boundaries. You might expect “picture thought” - a tendency to conceive of broad, complex understandings as single “big pictures,” not necessarily visual. You might even expect a fascination with parts of objects, since parts are foreign. In short, you might expect to see something which closely resembles what we now call autism.

However, it is not the intention of this essay to prove a link between holistic thought and autism, or even to assume one, but merely to suggest it. And even if no link exists, it’s important to understand that “lumpers and splitters” is about more than just one’s attitude towards classifying autistics.

Holistic thought and linear thought interrelate in important ways, and each is equally valid despite the societal bias which favors linear thought. Indeed a “splitter” would tend to see different types of autistics; a “lumper” would see them as all the same. However, to argue these points of view is as fruitless as arguing Yin versus Yang. BOTH are correct:

Sometimes it’s useful to consider autistics separately; sometimes it’s useful to consider autistics as a whole.

(And sometimes it’s useful to consider humanity as a whole.)

The question of whether or not to classify autistics, and how, has been given much debate – and still is. Why? Before answering that question, let’s address some commonly held….

MYTHS/FALSEHOODS ABOUT AUTISM

Falsehood #1: Nobody knows what’s going on inside the heads of non-verbal autistics.

Even a dog, without words, can express what it is thinking/feeling. Are non-verbal autistics less expressive than dogs? And what about those autistics who become verbal – does the propensity to express oneself arise only after the ability to communicate verbally is achieved? Despite proclamations to the contrary, autistics are capable of non-verbal self-expression. Not everyone can understand it, but to say or imply that nobody can, which would imply that it's impossible, which would absolve us of the burden of responding, is to do a terrible disservice to those autistics who are crying out with every fiber of their being, expressing themselves in every way except verbally, (wouldn’t that seem to insultingly invalidate their hardships?) It’s likely that those who deny or discount non-verbal autistic self-expression, simply don’t like what’s being expressed, or the way it’s being expressed, or don't want to respond. In a day and age when even verbal autistics are routinely ignored for those reasons, this is not hard to imagine.

Falsehood #2: Affirming potential in all autistics, or arguing against a cure for autism, is the same thing as saying “don’t help autistics.”

This one could probably stand alone, without explanation. The very act of affirming autistic potential logically supports and promotes the idea that autistics should be helped, not hindered, so it should be obvious how ridiculous this belief is. Perhaps not so obvious is how insidious it is. Pro-cure/anti-autism factions argue that since autistics need help, autism is a bad thing and needs to be cured – a logical fallacy. They argue that anyone who thinks otherwise, doesn’t want to help autistics. This myth doesn’t belong anywhere in an “Article of Understanding” – not even as a gesture of appeasement – except to point out the fallacy of it: to my knowledge, NOBODY, ABSOLUTELY NOBODY is saying, “Your autistic child may have a Nobel Prize in him, so let’s not help him.” Clarifying this misunderstanding does a service to all involved; perpetuating a falsehood does not.

Falsehood #3: “Low-functioning/severely affected/real” autistics have no potential, except to be cured, which they need and want. “High-functioning/Asperger’s” autistics have potential; they do not need or want to be cured. Therefore any autistic who argues against a cure, or believes in autistic potential, or demonstrates autistic potential, must be the “high-functioning/Asperger’s” kind, not the “real” kind. Furthermore, since they are not “real” autistics, they don’t know anything about “real” autism, and shouldn’t speak for “real” autistics.

Autistics recently began speaking out in ways and in numbers that were never possible before. Opponents, rather than address the issues which were raised, argued in classic ad hominem style that no “real” autistic would ever be able to express him/herself that way, and therefore the messages must be invalid. The fact that none of these apparently intelligent and articulate autistics expressed a desire to be cured was conveniently and dismissively explained by opponents by saying that those autistics who want and need to be cured are not the intelligent and articulate kind; they are the “low-functioning” kind who can’t speak for themselves.

In fact, the way an autistic expresses him/herself on the internet is not an accurate gauge of where he or she falls on the “spectrum.” Nor are the things being expressed an indicator of how “severely affected” an individual is. Verbal autistic advocates come from across the entire spectrum, with varying abilities and “functionality levels.” They are all, to some degree, at certain times, verbal, but nothing else can be assumed.

It should also be noted that there have always been verbal autistics. Technological advances in communication made possible by computers and the internet, rather than an expansion of who qualifies as autistic, is what brought them into the “world of the verbal.”

As far as who speaks for autistics, the most logical and reasonable answer to that question is, the autistics who can speak. There is absolutely no indication that non-verbal autistics would say anything different from what autistics are already saying.

It’s apparent that autistics have been separated into two types, not because of a natural division which may or may not exist, but in order to discredit the things that verbal autistics are saying. The autistic backlash against this enforced division arose in defense of autistic credibility, not because the “lumpers” disagreed with the “splitters.” However, the debate is a compelling one; “lumpers” and “splitters” really do exist, which is why the focus was so effectively shifted away from the real issue, and onto a non-issue. Even Michael Carley devoted a good portion of his essay to the topic of autistic classification; Alison Singer: her entire essay.

But in the end, it shouldn’t really matter which kind of autistic said what. What matters are the things that are being said.

THE ISSUE

As Michael pointed out, “the use of the word ‘cure’ has been a universally-denounced term amongst our folks” – but not because the word itself is offensive. And not because it is medically inaccurate to use the word “cure” when talking about a genetic condition. Both diabetes and heart disease have a strong genetic component, and are exacerbated or triggered by environmental, man-made factors – but we want to cure them, and despite their genetic components, both are diseases.

Nor is the prefix “dis-” inherently offensive, or bound to be psychologically damaging. The disability community, for instance, has appropriated the word “disability,” and made it their own. The blind are blind because they can’t see; the deaf are deaf because they can’t hear. Negative terminology is neither offensive, inappropriate, inaccurate, nor harmful. Nor does it diminish respect for who they are. While communities may be defined primarily by shared disability, no individual is defined by what he can’t do.

But let’s draw another parallel: homosexuality. Here is one genetic condition where use of the word “cure” is offensive and inappropriate. Homosexuality is not defined as a congenital inability to form healthy, romantic relationships with members of the opposite sex. To describe it this way is factually accurate, but incomplete, and makes it sound like a disorder. How we view a people profoundly affects how we treat them, and adopting a policy aiming to “restore” what is “missing” in homosexuals would be extremely harmful. Homosexuality is not defined by what it is not; it is something in its own right – something which, in times past, nobody could see or imagine: an inborn ability to form healthy romantic relations with members of the same sex.

A disease, disorder, or disability is an abnormal condition, either acquired or inborn, whose primary traits are a significant to serious impairment, lack, injury, dysfunction, difficulty, discomfort, etc. Blindness is a disability because, while there may be special abilities associated with it, those are clearly secondary; the inability to see is primary. Homosexuality is not a disease, disorder, or disability because, even though it often involves significant hardship, and a lack of opposite sex attraction, those are not primary traits.

Note that while we don’t define homosexuality by its hardships, we don’t deny those hardships either. However, the type of help required is neither curative, corrective, nor compensating; rather, it is supportive.

Autism is known to be a condition characterized by both ability and disability. However, we don’t know, or haven’t agreed upon what its primary characteristics are. What’s more, while it’s clear when disability exists, since expectations are not being met, it’s not always clear when ability exists, since the expectation may not be there. It’s likely we don’t know everything autistics are capable of.

Very simply, we know what autism is not, but even researchers and clinicians will agree that we don’t know what autism is. Therefore, since we have incomplete information, we cannot say for sure that autism is a disorder.

The tendency to think of autism in terms of what it is not, or what it can’t do has often been harmful. Sometimes this is dramatically evident, such as when autistics are thought of as unaware of their surroundings, unable to feel pain, or unable to express themselves.

Unlike the disability community, the autistic community has not appropriated negative terminology. Technically accurate words such as “abnormal” are actively decried, and almost never used by autistics themselves. Likewise, negative depictions have been rejected as “offensive,” and “bigoted.” Autistics seem to know this instinctively, based on their feeling reaction. They know that when you talk of autism, you’re talking about what they are, and this has been expressed over and over again.

Do these things suggest that autism is a condition which should be thought of in terms of what it is, or what it can do, rather than in terms of what it is not or what it can’t do?

Is autism something in its own right?

Do we treat autism as a disorder when we don’t know that to be true?

Are words such as “cure” appropriate, when “support” might be a better word?

Does the fact that no real advances have been made in curing autism suggest that maybe they’re on the wrong track?

Ethics demand that these questions be taken into consideration.

The reality is that policy regarding autistics is ultimately decided by non-autistics, regardless of whose call it is to make. However, ethics demand that autistics have a significant input in this decision – currently, they are ignored.

It’s evident that a simple, seemingly semantic shift in how we view and describe autism can profoundly change how autistics are treated. We need to be open to the possibility that the way we currently treat autistics may be wrong – profoundly wrong.

And with so much at stake – human lives – we can’t afford to be wrong.