New Blog

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!

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

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

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

Another Meme from ABFH

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

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.