Many many wonderful bloggers have weighed in this morning on the demise of the campaign. In no particular order:
Gimp Parade — a blog I have neglected lately, but do so appreciate for its coverage of disability rights;
Kristina Chew at Autism Vox — Kristina deserves a Webbie for being on top of this issue, from start to finish;
Susan Etlinger, blogging at BabyCenter — Susan aplty descibes the campaign and its demise as a “step forward” ultimately;
Niksmom — who hears the fat lady singing and tells us that Santa came early;
and Furious Seasons reminds us of Koplewicz’ connection to the Paxil Study 329. (FYI, Study 329 basically asserted that Paxil beat placebo in treating depression in teens when, in fact, it did not. In addition, there were instances of suicidality in this study which Glaxo somehow managed to deep-six.)
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For me, many lessons in activism emerge from the Child Study Center’s decision to remove the ad. First, the knowledge that one person can make a difference. The person, or persons, in this case being Ari Ne’eman of the Autistic Self-Advocacy Network, as well as Kristina Chew herself.
Second, the realization that some fights will need to be fought over and over again. A learned professor well known in disability studies pointed out to me via email the similarity of this campaign to others equally offensive, remarking that “there is a trend to depict the disability as something unacceptable, hostile, criminal.” As I told a friend of mine last night, sometimes in the world of activism, you feel like your job is never done.
Finally, and perhaps most obviously, the lesson that thanks to the internet, the rules of engagement have changed. The three women quoted in that New York Times article last week? We’ve never met in person, but boy did we figure out what needed to be said, and how, and when.
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According to their press release, Koplewicz and the Child Study Center are offering an invitation “to continue this conversation online at a ‘town hall’ meeting that we will hold early next year as we plan the next phase of our national public awareness campaign on child mental health. Look for details on our web site.”
For that town hall meeting, I would suggest the following points, those that must be at the foundation of any future public awareness:
1. Nothing About Us Without Us. The preeminent call of any civil rights movement. Any future discussion of awareness or education must include those who are presumably being helped, or discussed, or represented. No more ignorance, no more condescension.
2. People First Language. If the goal is to help, there must be faces to these disabilities. Anything less reinforces stereotypes and ignorance.
3. Recognize and affirm the difference between life long disabilities (autism) and potentially remediated disorders (bulimia). Assume responsibility for making careful, considered distinctions between the two.
4. Participation of educators and experts beyond the limited scope of NYU and BBDO. Over 12 different disability rights groups signed the original online petition, as did 1186 individuals, many of whom are professionals in the field. Their voices are significant and necessary.
5. Full accountability for any and all connections, either implicit or covert, between the Study Center and pharmaceutical companies. Awareness must not be tainted by the undercover influence of those who make and sell drugs to “fix” and “repair” these disorders.
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A last word: I’d like to thank everyone out there for reading and signing and reading some more. It was a big, busy two weeks. Now let’s keep going so we don’t have to do this again.
now available on Amazon.
Comments 15
Well said! I’m so relieved, but I know the battle isn’t over. By a long shot.
Posted 20 Dec 2007 at 6:30 pm ¶First, just thanks.
And double-triple thanks for the list: Forward, onward.
Posted 20 Dec 2007 at 7:56 pm ¶Beautfully said. And now the hard work begins. Again. And again. But wow…what a way to break the ice!
Posted 20 Dec 2007 at 11:32 pm ¶Justice is a constant struggle.
all love -
Posted 21 Dec 2007 at 7:57 am ¶I second all these comments. And as we all return to this again, and again, in whatever forms it takes, it’s nice to remember the beautiful things we are actually returning to, as Vicki stated them. Things like “nothing about us without us” and “people first.” And actually, however ironic it may seem at times, how lucky we are to know their resonant truth, and to keep returning, come what may.
Posted 21 Dec 2007 at 9:17 am ¶Way to go! It’s so inspiring to know that one person (and many people, all e-mailing together) CAN make a difference.
Posted 21 Dec 2007 at 12:56 pm ¶I don’t think I’ve ever been a part of anything that has felt so instantly rewarding. To speak out and be heard…how great is that?
Posted 21 Dec 2007 at 1:34 pm ¶I have to echo so many of these comments. It does feel wonderful to know that we spoke up and were heard. Whatever the impetus for NYU to pull the campaign…investor pressure, recognition of waht anabomination the whole thing was, the power of our words…I am glad they did. Now it’s time to roll up our sleeves and LEAD the way instead of following *their* (NYU’s) lead!
Posted 21 Dec 2007 at 2:20 pm ¶Ugh, hate typos…”what an abomination…” Sorry, brain froze while fingers typed on…
Posted 21 Dec 2007 at 2:21 pm ¶“2. People First Language. If the goal is to help, there must be faces to these disabilities. Anything less reinforces stereotypes and ignorance.”
“The person, or persons, in this case being Ari Ne’eman of the Autistic Self-Advocacy Network,”
The driving force behind this (as well as myself and many others) would not support your #2. Ari’s Network is *not* called “The Self-Advocacy Network of People with Autism”.
Posted 21 Dec 2007 at 2:50 pm ¶Please help me find “people first” replacements for the following phrases:
“transgendered people with autism”
“gay and lesbian teens with autism”
“bisexual adults with autism”
To satisfy “people first” standards in these phrases, the “people word” (such as “people” or “teens” or “adults”) obviously needs to come in front of all the other words in the phrase. (Obviously, “transgendered people with autism” and so on do not meet this standard because the existing phrase has “transgendered” coming before “people” instead of putting “people” first.)
I have tried very hard to find “people first” replacements for the above, but have had no success. What do you suggest as “people first” ways of saying “transgendered people with autism” and so on?
When I asked lesbian/gay/bi/transgendered people for help on this, they regarded my question as insulting, so I take it to you.
Posted 22 Dec 2007 at 9:13 am ¶These comments came from another reader. I’m posting them for her:
By requiring “person with ____ ” phrases, you’ll ban from the discussion Ari Ne’eman and hundreds of us other autistic and Asperger’s adults who’ve brought down “Ransom Notes”. More and more of us successful, concerned, and disabled adult self-advocates find “person-with”-speak as coldly dehumanizing and offensive as anything in “Ransom Notes.” (That smear-campaign managed to spread hate without once using a phrase that “person with” would ban.) Imagine how you’d feel if a meeting on women’s rights required calling women “people with femaleness” …
To see this said better than I know how, Google autistic activist Jim Sinclair and his on-line essay “Why I Dislike Person-First Language.” I look forward to your comments on his position: the position I share.
Autistic activist Jim Sinclair’s essay “Why I Dislike Person-First Language” inhabits http://web.syr.edu/~jisincla/index.html
Though I’ve no easy answer for Lou’s question, several disability activists have written important resources about their own experiences of what it means to put the word “people” first when they talk about their own disabilities:
http://web.syr.edu/~jisincla/person_first.htm
http://tinyurl.com/2hqdgj
appendix of a page about how the movie industry represent/alludes to autism:
Posted 22 Dec 2007 at 12:17 pm ¶http://tinyurl.com/23akbf (NOTE: to get to the section about putting the word “people” first, you have to scroll all the way down to the appendix or just read the very interesting article itself. The link takes you to the whole page, not directly to the section about which word to put first.)”
Thanks, Vicki, for posting my comments! (comment #12). You’ve made me a happy woman!
(Food for thought:
contemplate the difference between
“a happy woman”
and
“a person with female gender and happiness.”
If you require “person with ____” constructions
when talking about disabilities,
ask yourself why you don’t
require them for talking about other human traits.
Requiring
a special grammatical form for
talking about us disabled people
strikes me as
stigmatizing,
dehumanizing,
and cold:
like calling a crying child
Posted 22 Dec 2007 at 1:25 pm ¶“a child emitting cries.”
A thought about language: when the diagnosis is something that announces itself with physical characteristics, the impulse is to push for a recognition of the individual child/person. But when the diagnosis is not readily apparant, naming the name becomes a way of claiming it.
They are different ways of affirming an individual’s right to be whomever they are; I think it’s well and good that there are dissenting opinions about language choice. It means we shall keep discussing it, which to my way of thinking, is a good thing. Keeping these issues in the hearts and minds of people, and agreeing that in the end, perhaps there is no one right way to label people, because we all are more unique than that.
Posted 24 Dec 2007 at 12:26 pm ¶“People First Language. If the goal is to help, there must be faces to these disabilities. Anything less reinforces stereotypes and ignorance.”
I agree there must be faces to the disabilities, but I don’t think person first language is the best way to go about it. Basically, there are three ways of viewing a disabled person:
Posted 11 Jan 2008 at 8:23 am ¶a) as a living embodiment of their disability, which is I think what you’re trying to fight.
b) as a person who incidentally happens to have an insignificant difference that should be ignored, which is how I see person first language being used.
c) as a certain kind of person, someone different from those who don’t fit that category in a significant way that does not at all reduce their worth as a person.
I want to be seen as c) an autistic person. Not AUTISM, or a PERSON with autism, but as a special and unique person with some of my uniqueness being due to autism.
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