Comments on: NYU Child Study Center to Hold Town Hall Meeting, Post “Ransom Notes” http://www.blisstree.com/articles/nyu-child-study-center-to-hold-town-hall-meeting-post-ransom-notes/ Family, Health, Home and Lifestyles Wed, 09 Dec 2009 23:07:47 -0500 http://wordpress.org/?v=2.8.4 hourly 1 By: Register for NYU Child Study Center Online Town Hall at 9am TODAY http://www.blisstree.com/articles/nyu-child-study-center-to-hold-town-hall-meeting-post-ransom-notes/comment-page-1/#comment-551489 Register for NYU Child Study Center Online Town Hall at 9am TODAY Tue, 26 Feb 2008 13:30:42 +0000 http://www.autismvox.com/nyu-child-study-center-to-hold-town-hall-meeting-post-ransom-notes/#comment-551489 [...] Details can be found here; registration starts at 9 a.m. today and commenters have contributed thoughts on what to address in the forum. How can we improve awareness and care for individuals with conditions like autism, [...] [...] Details can be found here; registration starts at 9 a.m. today and commenters have contributed thoughts on what to address in the forum. How can we improve awareness and care for individuals with conditions like autism, [...]

]]> By: dkmnow http://www.blisstree.com/articles/nyu-child-study-center-to-hold-town-hall-meeting-post-ransom-notes/comment-page-1/#comment-547570 dkmnow Sun, 24 Feb 2008 21:18:26 +0000 http://www.autismvox.com/nyu-child-study-center-to-hold-town-hall-meeting-post-ransom-notes/#comment-547570 Coupled with the fact that widespread social prejudice destroys our lives on a day-by-day basis, the point must be made that researchers and professionals bear full responsibility for the effects of what they say about us. The claim that they are "only trying to help" does not give them license to have it both ways. Or, are we to believe that centuries of slavery and mistreatment of blacks in the US was all "for their own good," and only turned out to be wrong because "their feelings were hurt"? No, Whenever anyone is dehumanized -- anyone at all -- ALL of humanity is harmed. And we have every right and reason to <i>demand</i> that our experts in psychology, of all people, bear this fact prominently in mind and conduct themselves accordingly. IF the self-proclaimed experts wish to enjoy the luxury of telling society how we are to be perceived, then THEY must accept accountability for the trivialization and dehumanization that will <i>predictably</i> be inflicted upon us by that same society. If they are unwilling to accept that responsibility, then it's damned-well time for them to shut up and let us speak for ourselves. Coupled with the fact that widespread social prejudice destroys our lives on a day-by-day basis, the point must be made that researchers and professionals bear full responsibility for the effects of what they say about us. The claim that they are “only trying to help” does not give them license to have it both ways.

Or, are we to believe that centuries of slavery and mistreatment of blacks in the US was all “for their own good,” and only turned out to be wrong because “their feelings were hurt”? No, Whenever anyone is dehumanized — anyone at all — ALL of humanity is harmed. And we have every right and reason to demand that our experts in psychology, of all people, bear this fact prominently in mind and conduct themselves accordingly.

IF the self-proclaimed experts wish to enjoy the luxury of telling society how we are to be perceived, then THEY must accept accountability for the trivialization and dehumanization that will predictably be inflicted upon us by that same society. If they are unwilling to accept that responsibility, then it’s damned-well time for them to shut up and let us speak for ourselves.

]]> By: Kristina Chew, PhD http://www.blisstree.com/articles/nyu-child-study-center-to-hold-town-hall-meeting-post-ransom-notes/comment-page-1/#comment-547714 Kristina Chew, PhD Sun, 24 Feb 2008 20:32:10 +0000 http://www.autismvox.com/nyu-child-study-center-to-hold-town-hall-meeting-post-ransom-notes/#comment-547714 Sarah wrote---"I think teaching from a young age that there is a biological underpinning to these illnesses is an important part in reducing the stigma and shame attached to them"----yes, yes. Maybe such an approach would also help in reducing shame in families who can then be more honest in helping kids with ED's, depression, ASDs, and being honest about their own backgrounds and themselves. Getting ready to rattle--- Sarah wrote—”I think teaching from a young age that there is a biological underpinning to these illnesses is an important part in reducing the stigma and shame attached to them”—-yes, yes. Maybe such an approach would also help in reducing shame in families who can then be more honest in helping kids with ED’s, depression, ASDs, and being honest about their own backgrounds and themselves.

Getting ready to rattle—

]]> By: dkmnow http://www.blisstree.com/articles/nyu-child-study-center-to-hold-town-hall-meeting-post-ransom-notes/comment-page-1/#comment-547673 dkmnow Sun, 24 Feb 2008 19:12:13 +0000 http://www.autismvox.com/nyu-child-study-center-to-hold-town-hall-meeting-post-ransom-notes/#comment-547673 My big concern, then and now, is that even with all the talk of "stigma," we never quite hit the nail on the head with sufficient force to drive the point home. That point being just how pervasively the culture-wide perceptions of "mental illness" destroy our quality of life on a moment-to-moment basis, day after day, year after bloody year, throughout our life-span. In that light only, can the point be made that the way other people treat us is far more genuinely debilitating than anything intrinsic to autism itself. But because that point was just not made with sufficient force and clarity, Koplewicz and others were left free to trivialize our concerns as nothing more than "hurt feelings," and so forth. Just making reference to stigma doesn't cut it -- it's even harder to convey than the more common position about being a "second-class citizen" fighting against "white/male privilege," and the like. And yet another flood of inflamed rhetoric just won't get the job done. We have to be unmistakably clear. There are gawdawful layers of habitual prejudice to be broken through there. But that's exactly what we have to do. And I'll be trying to think of how to convey it. I dunno. Generally, I detest the thought of applying tactics of rhetorical/political triangulation. But, if we can make that point with enough clarity and consistency, then for the self-proclaimed "experts" to trivialize our concerns by missing the point (deliberately or otherwise) might serve only to make them look like callous old fools. As much as I dislike the thought, it might be the only way to really rattle their cage. And rattle their cage, we must. They must not be permitted to continue trivializing us with impunity -- people must be made to understand: it's the practical equivalent of killing the person they claim to be "helping." My big concern, then and now, is that even with all the talk of “stigma,” we never quite hit the nail on the head with sufficient force to drive the point home. That point being just how pervasively the culture-wide perceptions of “mental illness” destroy our quality of life on a moment-to-moment basis, day after day, year after bloody year, throughout our life-span. In that light only, can the point be made that the way other people treat us is far more genuinely debilitating than anything intrinsic to autism itself.

But because that point was just not made with sufficient force and clarity, Koplewicz and others were left free to trivialize our concerns as nothing more than “hurt feelings,” and so forth. Just making reference to stigma doesn’t cut it — it’s even harder to convey than the more common position about being a “second-class citizen” fighting against “white/male privilege,” and the like. And yet another flood of inflamed rhetoric just won’t get the job done. We have to be unmistakably clear. There are gawdawful layers of habitual prejudice to be broken through there.

But that’s exactly what we have to do. And I’ll be trying to think of how to convey it. I dunno. Generally, I detest the thought of applying tactics of rhetorical/political triangulation. But, if we can make that point with enough clarity and consistency, then for the self-proclaimed “experts” to trivialize our concerns by missing the point (deliberately or otherwise) might serve only to make them look like callous old fools. As much as I dislike the thought, it might be the only way to really rattle their cage.

And rattle their cage, we must. They must not be permitted to continue trivializing us with impunity — people must be made to understand: it’s the practical equivalent of killing the person they claim to be “helping.”

]]> By: sarah http://www.blisstree.com/articles/nyu-child-study-center-to-hold-town-hall-meeting-post-ransom-notes/comment-page-1/#comment-547620 sarah Sun, 24 Feb 2008 16:13:26 +0000 http://www.autismvox.com/nyu-child-study-center-to-hold-town-hall-meeting-post-ransom-notes/#comment-547620 Like so many things, I think education may be the key. Beginning at a pretty young age, there needs to be an awareness that these conditions exist - commonly. Kids in Kindergarden are already learning about AIDS, heart disease, and breast cancer - ie, jumping rope for a cure, pink ribbons, etc. Why not begin education about mental health and other conditions such as autism and aspergers at that age? A good start might be a more inclusive setting; perhaps putting kids with Autism or other developmental disabilities together with typical kids for even a short period a few times a week - such as during gym class or on the playground? For students with a 1:1 aide, this would be particularly feasible, regardless of the severity of the disability. A major benefit of that scenario is kids are so much more accepting and less judgmental at a young age, and exposure to "non-typical" kids could very conceivably lead to a much more accepting environment by decreasing some of the stigma and shame created by a simple lack of exposure and knowledge to these kids. It reputes the idea that "non-typical" kids are "disabled" but are rather "abled-differently" - an incredibly PC term, I know, but not that inaccurate. I also think that there are many kids who know or are related to people with physical or mental illnesses, and may feel ashamed of them; creating a more integrated environment could lessen a lot of that shame, as well as making the point that "non-typical" kids are simply other people - maybe not as visible as typical kids are, but nevertheless present, unique, and not rare. As far as mental health, I think that early education is also the key. Many health curricula already include education about mental health, including depression, anxiety, and eating disorders; kids as young as 3rd grade are being taught (simplified) warning signs of depression in themselves and their friends. A key component of these curricula (I think) is that they utilize a psychosocial model, ie that mental illness is a result of genetics + environment. I think teaching from a young age that there is a biological underpinning to these illnesses is an important part in reducing the stigma and shame attached to them, not to mention a hugely important step in early identification and intervention of some diseases that untreated, can be truly disabling. Like so many things, I think education may be the key. Beginning at a pretty young age, there needs to be an awareness that these conditions exist – commonly. Kids in Kindergarden are already learning about AIDS, heart disease, and breast cancer – ie, jumping rope for a cure, pink ribbons, etc. Why not begin education about mental health and other conditions such as autism and aspergers at that age? A good start might be a more inclusive setting; perhaps putting kids with Autism or other developmental disabilities together with typical kids for even a short period a few times a week – such as during gym class or on the playground? For students with a 1:1 aide, this would be particularly feasible, regardless of the severity of the disability. A major benefit of that scenario is kids are so much more accepting and less judgmental at a young age, and exposure to “non-typical” kids could very conceivably lead to a much more accepting environment by decreasing some of the stigma and shame created by a simple lack of exposure and knowledge to these kids. It reputes the idea that “non-typical” kids are “disabled” but are rather “abled-differently” – an incredibly PC term, I know, but not that inaccurate. I also think that there are many kids who know or are related to people with physical or mental illnesses, and may feel ashamed of them; creating a more integrated environment could lessen a lot of that shame, as well as making the point that “non-typical” kids are simply other people – maybe not as visible as typical kids are, but nevertheless present, unique, and not rare.

As far as mental health, I think that early education is also the key. Many health curricula already include education about mental health, including depression, anxiety, and eating disorders; kids as young as 3rd grade are being taught (simplified) warning signs of depression in themselves and their friends. A key component of these curricula (I think) is that they utilize a psychosocial model, ie that mental illness is a result of genetics + environment. I think teaching from a young age that there is a biological underpinning to these illnesses is an important part in reducing the stigma and shame attached to them, not to mention a hugely important step in early identification and intervention of some diseases that untreated, can be truly disabling.

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