Disability Rights Community vs. Autism Speaks

[sent to family and friends]

The letter below is the latest step in a national and international protest against the U.S. organization known as Autism Speaks. Countless attempts have been made to impress upon the organization that its public rhetoric, policies and practices are profoundly harmful to ALL Autistic citizens, and that its leadership MUST accept guidance from Autistic stakeholders and the broader disability rights communities if they wish to retain their status as a prominent charitable organization.

Autism Speaks has thus far been dismissive and even contemptuous in response to such appeals and cautions. It has therefore become necessary, regrettably, to adopt a more aggressive approach to the re-education of Autism Speaks — by first educating their sources of publicity and revenue.

If Autism Speaks cannot be made to sincerely recognize the necessity of giving the voices of Autistic citizens a prominent place in the guidance of its activities — and to act in good faith on that necessity — then the organization must be prepared to face its own extinction.

The global disability community stands united in this demand for just and equitable representation: “Nothing about us without us!”

–DKM

—–

The Autistic Self Advocacy Network (ASAN):

Letter to the Sponsors, Donors and Supporters of Autism Speaks
http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=61
or
http://tinyurl.com/yc2le2s

Petition, open for individual signatories (like you!) to ASAN’s letter:
http://www.ipetitions.com/petition/AutismSpeaks

ASAN website:
http://www.autisticadvocacy.org

—–

More background on opposition to Autism Speaks, their policies and practices, and their recent “I Am Autism” video:

codeman38 — “Do You Know What You’re Supporting?”
http://tinyurl.com/ygpnp7f

codeman38 — A level-headed evaluation of the “I Am Autism” video:
http://tinyurl.com/lmspla
[includes transcript and link to video]

Disabled-World.com — “Autism Speaks – Friend or Foe?”
http://tinyurl.com/ye5xnto

Club 166 — “When Will They Listen?”
http://tinyurl.com/yggjj45

ABFH — A long list of links to blogs and articles in response to “I Am Autism,” plus a few links to video parodies:
http://tinyurl.com/yzqe3wz
[scroll down for link lists]

—–

A few alternative voices [videos]:

Dan Marino Foundation & ASAN, NoMyths.org PSA:
http://nomyths.org/

Rethinking Autism: Autistics Speak
http://www.youtube.com/watch?v=cWOwNP9vC6k

—–
—–

Critic of the Dawn
By Cal Montgomery
http://www.raggededgemagazine.com/0501/0501cov.htm
[a powerful essay that has become a modern classic in disability literature; a must-read for anyone who wishes to understand the dynamics of discrimination, and how society decides whose point of view is worth considering, and who matters, and who doesn't]

—–

[end]

Deficit-model feeds anti-Autistic prejudice

[Originally posted on June 24, 2009, as a comment on Helene Guldberg's Psychology Today article, "How the quack industry harms autistic children," an interview with Michael Fitzpatrick, discussing his book, Defeating Autism: A Damaging Delusion.]

Not a bad article – especially in contrast to the kind of “information” that currently dominates popular opinion on the topic of autism.

Unfortunately, it does not go nearly far enough into the question of harm, because it proceeds solely from the narrow “deficit model” of autism. Lacking what is often referred to in academia as “the sociological perspective,” such discussions cannot approach the issues that have, by far, the most devastating impact on quality of life, not only for children, but for all Autistics.

There is no question that some of the medical and developmental issues often associated with autism can be debilitating in and of themselves. Nevertheless, this is only one part of the picture. What is being almost universally overlooked is the seemingly obvious fact that misinformation, stereotypes, stigma, and widespread cultural prejudice against human diversity are not “symptoms” of autism. These phenomena, which operate in the much wider medium of society at large, obviously taint autism science and make parents and Autistics victims of fear and exploitation, but that’s not all. The culture-wide propagation of misinformation and the social construction of anti-Autistic prejudice loops back around to impact on the day-to-day lives of all Autistics in deeply pernicious and suffocating ways that even “experts” are ill-prepared to recognize. Day after day, at the hands of the general public, Autistics face direct expressions of fear, pity, dehumanization, manipulation, bullying, abuse, and denial of any or every form of opportunity, no matter how well earned. These are all constant hazards to every Autistic citizen on the planet.

But none of this is in any way intrinsic to autism itself. This does not “come with” autism. This is what is done to autistics. And, for the vast bulk of Autistic citizens, the effects of widespread misinformation and prejudice are far more genuinely debilitating than anything that is actually part of autism itself.

Like it or not, professionals and researchers are at the forefront of this problem. Proceeding almost exclusively from the “deficit model,” they have no tools with which to contribute to the solution — indeed, they may well lack the conceptual vocabulary necessary to even begin to recognize the depth and scope of the problem. Without the benefit of a “sociological perspective” — without a grasp of the much more devastating impact of socially constructed prejudice — professionals are scarcely even in a position to prevent themselves from harming Autistics, to say nothing of helping.

I think the Autistic community deserves better.

Learning By Example

Yes, mainstream “values” set the example. And, yes, our youth internalize those “values” and follow that example — albeit, sometimes too explicitly to suit our comfort and convenience:

“The video was made by girls at a Spanaway, Washington school who apparently had a falling out with a classmate, Piper. The clip carries illustrations of Piper being shot, made to commit suicide, thrown off a cliff and poisoned…”

Of course, we note — with some satisfaction, no doubt — that these girls were “disciplined.” That’s the modern-day euphemism for extrinsic punishment. We no longer remember what that revered word “discipline” once expressed. We just use it to sanctify that very social mechanism which makes such offenses so common first place: society’s unquestioning devotion to, and all-consuming obsession with, extrinsic behavioral conditioning.

[Note to Autism Hub members: that last devotion/obsession is, in my opinion, the very root of what ultimately makes ABA and its offshoots unethical.]

More on that later…

I resisted. But it was futile.

Yes, it was inevitable. And now it’s done.

I am now officially “Twitterpated.”

The inexplicably enthusiastic should note, however, that I am NOT mobile, and email is still the most reliable way to contact me. Don’t Blackberry me before I’m dead.

That is all.

As you were.

New GAO Report: Schools Abuse Disabled Kids

["GAO" = Government Accountability Office, United States of America]

From a new entry on the Mother Jones blog:

GAO: Schools Abuse Disabled Kids

— By Jen Phillips | Tue May 19, 2009 11:07 AM PST

A new GAO report shows that the Judge Rotenberg Center in Massachusetts isn’t the only place where developmentally disabled and emotionally troubled kids have been physically punished and restrained. The [new GAO] report, which came out today, details cases at public and private schools across the nation where children as young as five have been sat on, lashed to chairs, isolated for hours, starved, and humiliated as punishment for actions like “slouching and hand waving.” In dozens of cases, these punitive measures resulted in students’ deaths…

[continued at blog title link above]

- – -

The GAO Report:

Seclusions and Restraints: Selected Cases of Death and Abuse at Public and Private Schools and Treatment Centers

GAO-09-719T May 19, 2009
Highlights Page (PDF)
Full Report (PDF, 62 pages)
Accessible Text

Summary

In Process

GAO found no federal laws restricting the use of seclusion and restraints in public and private schools and widely divergent laws at the state level. Although GAO could not determine whether allegations were widespread, GAO did find hundreds of cases of alleged abuse and death related to the use of these methods on school children during the past two decades. Examples of these cases include a 7 year old purportedly dying after being held face down for hours by school staff, 5 year olds allegedly being tied to chairs with bungee cords and duct tape by their teacher and suffering broken arms and bloody noses, and a 13 year old reportedly hanging himself in a seclusion room after prolonged confinement. Although GAO continues to receive new allegations from parents and advocacy groups, GAO could not find a single Web site, federal agency, or other entity that collects information on the use of these methods or the extent of their alleged abuse. GAO also examined the details of 10 restraint and seclusion cases in which there was a criminal conviction, a finding of civil or administrative liability, or a large financial settlement. The cases share the following common themes: they involved children with disabilities who were restrained and secluded, often in cases where they were not physically aggressive and their parents did not give consent; restraints that block air to the lungs can be deadly; teachers and staff in the cases were often not trained on the use of seclusions and restraints; and teachers and staff from at least 5 of the 10 cases continue to be employed as educators…

- – -

[now back to me]

Obviously (to anyone who bothers to pay attention to such things), the described atrocities are constant and pervasive in US culture. But I haven’t seen a report of this kind for years. The last one that was even remotely similar was a California study on Abuse and Neglect of Adults with Developmental Disabilities in institutional and “half-way” settings.

So, if the problem is so horrendous, why are such studies so few and far between? It would seem that funding for such studies is extremely hard to come by. Untold millions of taxpayer dollars are endlessly rushed to the cause of “researching” pharmaceuticals and other (enormously high-profit) medical practices, in order to get them onto the market as quickly as possible while maintaining the pretense that they have been “proven safe and effective.” When it comes to exposing the blithely sanctified atrocities that are routinely inflicted upon “defective” citizens, however, there’s just not a penny to be found.

But why?

The first and most obvious answer is that those who hold the purse-strings are not motivated by any sincere ethical concerns. But that’s just part of it. Far more fundamental is the fact that the general public — the so-called “normal” masses — don’t know how to identify with the victims, don’t see it as their problem, and don’t want to be reminded of any of it. They pay to have these things quietly swept under the rug, not dragged out into the open, where their self-exalted “empathy” and “morality” might be called into question. That would be embarrassing. And threatening. And above all, inconvenient.

There’s nothing more eminently “normal” than habitual evasiveness in the service of ego-defense.

–DKM

Katie Couric’s Terrorphobia Inc.

To be fair, most of the corporate media float these sensationalist red herrings almost to the exclusion of all else. Nevertheless…

Tonight on CBS News, Couric plugged an upcoming segment promising to examine the presidential candidates’ positions on what she called “one of the most serious threats to this country, Islamic extremism.”

My immediate reaction:

NO, Katie. “Islamic extremism” IS NOT “one of the most serious threats to this country.” Statistically, by your own logic, such “serious threats” should include, as equally dangerous, the likelihood of allergic reactions to peanuts, and auto accidents involving deer on American roadways [1]. A much bigger threat — indeed, a genuine “existential threat” — is posed by deceitfully alarmist rhetoric peddled-for-profit by the corporate media, power hungry politicians, and the all-consuming National (in-)Security Industry.

Now I’m searching in vain to rent a billboard, as I always want to do when this bogeyman gets trotted out. As usual, I’ll just have to settle for breaking things instead. Gah!

[1] A False Sense of Insecurity, John Mueller, Ohio State University – Department of Political Science, Regulation, Vol. 27, No. 3, pp. 42-46, Fall 2004 PDF

See also:

Terrorphobia: Our False Sense of Insecurity, by John Mueller

Overblown: How Politicians and the Terrorism Industry Inflate National Security Threats, and Why We Believe Them, by John Mueller. (more)

APA Complicity in Abuse and Torture

A message from the Psychologists For Social Responsibility discussion group brings good news, and bad. A majority of the APA membership have made a significant step toward redeeming the organization, at least on the issue of participating in — and thus, tacitly condoning — inhumane treatment of detainees.

Many such organizations of legal and helping professionals — including the American Bar Association, the American Medical Association and the American Psychiatric Association — wasted little time in condemning the Bush Regime’s unlawful and inhumane treatment of detainees, and in barring their membership from any participation in such abuses. The APA leadership, however, were apparently unwilling to give up what promised to be a highly lucrative association with entrenched political interests. Shocker.

But this week’s news brings some real hope for change. Stephen Soldz, APA activist and founder of the Coalition for an Ethical Psychology, has posted a press release on the Psychoanalysts for Peace and Justice blog:

Yearbook Too Good For Short Bus Rabble?

Or is it just another case of the same old pedestrian status quo negligence, born of socially constructed ignorance, that always governs the behavior of the privileged toward atypical and non-privileged members of society?

Does it matter which? Intent may signify malice, but if the cause is mere ignorance and carelessness, what’s the difference? The effect is the same.

For the particulars in this case, here’s the scoop:

School Leaves Autistic Kids Out Of Yearbook
Parents Say Act Done Intentionally, School Disagrees

June 18, 2008

ROSEVILLE, Calif. — The parents of twin autistic boys left out of a yearbook are accusing the school of discrimination.

For All Our Mothers, Yours and Mine, Then, Now and Forever

Arise, then, women of this day! Arise all women who have hearts, whether our baptism be that of water or of fears!

In Search of Awareness

or, The Ghost of Easters Past …

For those in search of Autism Awareness, I suggest you start by turning OFF your television.

.

As a child, my experience of Easter was mixed. My early memories include the fun, the frivolous, and the unfortunate, the curious and the catastrophic, the “renewal” of spring and the crushing blows of “pragmatic” but uncomprehending nature, human and otherwise.

My lifelong agnosticism is not born of illiteracy regarding religious matters, as I was practically raised in the Presbyterian Church. I was as aware as any child of the significance of Easter in the Christian tradition. But like any child, my own perceptions were confined to the flow of my own experiences, whether pleasant or painful. My awareness of the commercialization, and the inevitable dilution of meaning that comes with it, came much later. And later still, other associations crept in…

Because someone had to do it

So there.

Next?

—

For those few who (owing to their living under a rock, I guess) are as yet unaware:

Q: Who is “katleen”?

A: “I Am Kathleen.”

Q: Oh, you mean “Kathleen.” Don’ look so “leejun” to me. Whyzit such a big deal?

A: Because the “subpoena” [PDF] is a retaliatory abuse of power, and a compound civil rights violation, contrived with intent to intimidate a very large group of citizens … and because “WE ARE ALL KATHLEEN, NOW!“

Shoemaker’s Witch-Hunt: An Open Letter

[Lists of dozens more blog entries in support of Kathleen Seidel can be found at Holford Watch, and I Speak of Dreams, and The Voyage, and Natural Variation, and ....]

[WARNING: extreme satire ahead!]

Autism Awareness: “Wait — you’re saying that YOUR prejudice is a ’symptom’ of MY autism?”

So, the dreaded “Autism Awareness Month” has arrived, and thus, the seasonal deluge of parental angst and professional avarice shall soon be upon us.

For my own part, I will indeed be attempting to participate in the “Blogging for Autism Awareness” project. Here, have a button: [deleted by host]

As words are often in short supply for me (well, coherent ones, at least), I expect I’ll mostly just be linking back to various classics in autistic self-advocacy and disability rights genres. But for this stab, I’m going to indulge in a bit of self-quotation, plus links…

Who will teach journalists how science works?

Scientific Blogging’s Michael White has a very interesting new piece (link below) on one aspect of how science is often (mis)represented in popular media. I don’t feel inclined to argue pro or con on any of the particulars of the case he examines, although I do have a great deal to say on the broader issue of how our society presently handles matters pertaining to scientific progress. But I’m saving that rant for later. As for the answer to my opening question, I’ll offer up this little “hint”: it won’t be our increasingly corporate-dominated education systems. Not the way things are going, at least.

However, I think Autism Hub readers, especially, will find many strikingly familiar themes in Bad Science Journalism and the Myth of the Oppressed Underdog — especially in light of [*cough*] recent events in The Great Autism Debate.

Share and Enjoy.

Evidence of Barm

(or, “Data?! We don’t need no stinkin’ data!“)

So, the Gub’ment conceded that one girl’s quasi-autistic characteristics might have been aggravated by some jab or other … and that’s conclusive proof that autism is caused by vaccines. Gawd, I love America! Big Pharma must be peeing their socks in delight over this spectacular distraction from their real atrocities. And what better way to help marginalize dissenters and their pathological obsession with “fact-checking”?

Well, who knows where scientists and autistics get their crazy ideas, anyway, and who cares? For normal people, sixty-two thousand four hundred repetitions make one truth, and researching the netertoobs goes something like this:

Update On Posts Blocked by NYU/CSC “Town Hall”

As was made clear by events on and following Tuesday, Feb. 26, NYU’s Child Study Center failed to live up to its promise of providing an open forum for discussion of children’s mental health (though they would have us believe otherwise). However, it would appear that Dr. Harold S. Koplewicz is gradually making good on his subsequent promise to reply via private e-mail to those posts which were blocked.

As evidence, I have just received a reply to one of my posts, which I will be deconstructing shortly for your enjoyment the purpose of furthering open dialog.

Moreover, the e-mail reply DID include, as expected, a copy of my original post, and presumably, this will be the case with all such replies. What that means is that those of you who were blocked will have a second chance to re-insert your voice into the sphere of public debate where it belongs.. If you wish, when you receive your reply, I will be happy to add the text of your original post to the current list of those that were gagged blocked by Koplewicz and crew. (yes, I know — I still need to polish up the list’s introductory text — bear with me)

I’ll add your post(s) to the list ONLY with your express permission, and if you prefer that your entry be listed anonymously, please let me know. If you would like your name/handle to link to a blog, website, or e-mail address, please provide those details as well. PLEASE SEND POSTS, permissions, and other details to me at my primary e-mail address — and please include “NYU/CSC” in the subject line so I’ll know it’s not spam.

Thank you,

–DKM

How NYU/CSC’s “Town Hall Meeting” SHOULD Have Been Done – A Coincidental Demonstration

For over two months, they continually protested of their eagerness to listen, to welcome the voices of the concerned, to come together with all and work hand-in-hand to help the children …

Mmmmmm-hm.

Via the purely unrelated vehicle of yesterdays’s liveblogging on the ongoing scandal surrounding the political lynching of former Alabama Governor Don Siegelman, Harper’s legal affairs contributor Scott Horton and Firedoglake.com accidentally delivered a seamless demonstration of what an online “town hall meeting” should look like.

Just Because…

Happily, I have just been informed that I have been added to the incomparable Autism Hub lineup, and by way of introduction, I can think of nothing more appropriate than:

 

There was a fish called the gillygoofang…

which swam backward to keep the water out of its eyes.

 

The gillygoofang bewildered all the trout in the brook,

not because it swam backward to keep the water out of its eyes,

but because…

 

 

[From The Gillygoofang, by George Mendoza, illustrated by Mercer Mayer, The Dial Press, Inc., New York. Now out of print.]

Some thoughts on helping, and “helping”

[UPDATE: For a bit more on this delightful topic, see Andrea's "So-Not-Helpful Fixers and their Malcommendations." Cheers.]

[reposted from my less-than-formal rantspace]

Everyone wants to appear helpful. Trouble is, rarely are any of us willing to do the extremely hard work of figuring out just exactly what help, if any, is actually needed. And when we fail to prevent our motives from being ruled by the social compulsion to appear helpful [and/or, the drive to promote our own careers ... hint, hint], our rationality is invariably compromised by conflicting interests, and we are almost absolutely guaranteed to screw the pooch. In such cases, unless we just happen to get lucky enough to guess right — which is a bit like playing the lottery with someone else’s money — then we are very likely to end up harming the person we’re so hell-bent on “helping,” and perhaps (OMG!) ourselves as well.

Or, to repeat what is rapidly becoming an “old saw” in my limited repertoire: “Ninety-nine per cent of the art of helping lies in knowing what NOT to do.“

But Ego is a Jealous God [as are fame and wealth], and guarding against the corrupting influence of social compulsion and ego-defense is perhaps the hardest work of all. It requires a great deal of time, self-awareness, careful critical thinking and skepticism, and rarest of all, an extraordinary commitment to self-honesty.

But, failing all that, here’s one rule-of-thumb whereby we can help ourselves to, at the very least, do no harm:

If we feel compelled to keep telling people over and over that we’re “only trying to help” … then WE’RE NOT.

This is not some cynical admonishment to never try to be helpful — far from it. Rather, we should take these hard realities as a recurring opportunity to carefully examine our own commitment to actually being helpful.

So … there it is.
]

The Real Town Hall

This page has been created to serve as a public-access repository for any and all of those posts which NYU/CSC saw fit to block from appearing in their “Town Hall Meeting.” The purpose of this repository is to:

1) give voice to those many concerns and questions which were blocked by NYU/CSC,

2) show the stark contrast between those posts which were blocked, and those which were allowed by NYU/CSC,

3) show that the “open forum” that NYU/CSC promised, and still claims to have provided, was in fact nothing of the sort.