NYU Ransom Notes Online Town Hall Tuesday

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Hello all,

This past December, we scored a great victory for the disability rights movement. By working together, we succeeded in forcing the full withdrawal of the offensive and dehumanizing Ransom Notes advertisements put out by the NYU Child Study Center. As you may recall, at the time of the ads withdrawal, NYU promised to hold a town hall meeting sometime in the future to address the concerns the disability community expressed. A lot has happened since then and our work has continued on a wide variety of fronts, from working to improve the education system for students on the autism spectrum to advocating for self-advocate representation in all parts of the policy process, amongst many other things. However, the time has come for us to return to the issues that sparked the massive response to the Ransom Notes ad campaign. On Tuesday, February 26th from 11 AM to 1 PM EST, the NYU Child Study Center will be hosting an online town hall to discuss "children's mental health" in response to the public outcry that shut down the Ransom Notes ads. While the medium is hardly perfect, the input collected during this will serve as the basis for future ad campaigns. As such, it is important that when this town hall occurs tomorrow, the disability community's advocates are well represented.

In light of that, the Autistic Self Advocacy Network is asking all of you to come to the online town hall and speak out against offensive depictions of people with all types of disabilities. The information to join the town hall will be found on the NYU Child Study Center's website at http://www.aboutourkids.org/. Please post this information to any and all forums, listservs, blogs or other locations whose readers might find it of interest. In addition, we've provided some major points to touch upon in the context of your advocacy tomorrow:

1. Nothing About Us, Without Us: Although self-advocates were the leading voices against the Ransom Notes ad campaign, the NYU Child Study Center has consistently referred to parents as being the primary group concerned about the offensive nature of the ads. Well this appears to be a relatively minor point, it illustrates a larger failure to recognize and respect adults with disabilities. When the Ransom Notes ads were being created, they were shown to a focus group of parents of children with disabilities. When the new ads are put together, they must be screened by focus groups of people with disabilities ourselves, in addition to any other stakeholders that are included in the process. People with disabilities must be included at every step of the process. Make sure that is an important part of the message you send to NYU tomorrow.

2. Advertise Hope, Not Fear: Too often, depictions of disability in the media rely on fear and negative stereotypes, thus increasing stigma and hurting our efforts for rights, inclusion and respect. The Ransom Notes ads were particularly egregious examples of this trend. Tell NYU that its future ad campaign should be based on what people with disabilities can achieve with the right kinds of education, services and supports and how individuals and families can access those options. Two excellent examples can be found in the National Autistic Society's Think Differently About Autism Campaign and the Gillette Children's Specialty Healthcare Cure Pity Campaign. Referencing these examples of positive advertising about disability issues can serve as a helpful tool as we work to communicate our vision of a supportive awareness campaign about disability.

3. Ensure Accurate Information: The Ransom Notes ads used phrases like "detriment to himself and those around him", "destroying his ability for social interaction and driving him into a life of complete isolation", and "no longer be able to care for himself or interact socially as long as he lives" to distort information about the legitimate and significant challenges associated with the disabilities being portrayed. These statements were attacked as not only highly offensive, but medically inaccurate. We need a world that accommodates and includes us, not one that fears and pities us on the basis of bad information. The next ad campaign should acknowledge and accurately describe the challenges we face, but do so in such a way as to encourage the general public to be understanding and supportive of those difficulties.

4. Acknowledge Ability and Personhood: The Ransom Notes ads depicted children with disabilities as "kidnap victims" who were not wholly present within their own bodies. The new ads must not only acknowledge and respect the fact that both youth and adults with disabilities are whole individuals, deserving of rights and respect, but should also focus on depicting individuals with disabilities as people with both strengths and challenges. Some argue that the areas where we have strengths do not need calling attention to, as we are not seeking the same level of support for those things. While it is the case that the challenges associated with disability require more funding and attention, what we can do also should be highlighted. The reason for this is that, for many people, the stigma associated with the diagnostic label they hold can be just as much or more of a problem for them as the lack of specific services to mitigate the disabilities they face. The need to debunk mistaken preconceptions, such as the belief that a person with a disability cannot hold a job or be a responsible parent, is at least as pressing as the need to ensure more services and supports.

5. Bring Adults Into the Conversation: Children with disabilities become adults with disabilities - and that is by no means a problem. What is a problem is the lack of awareness and support for adults with disabilities. There is a perception, reinforced by the media and advertising that portrays certain disabilities as solely the province of children, that some kinds of disabilities only relate to children. This is particularly true in the case of the autism spectrum and with learning disabilities, both of which were portrayed by the Ransom Notes advertisements. The problem is so extensive that a recent author of a bestselling book about autism announced that autistic adults did not exist! A media campaign that will truly draw attention to the varied and pressing needs of the disability community will highlight the issues of both youth and adults.

Thank you for your support and we look forward to having you join us in making sure that our concerns are heard tomorrow. Let's make sure NYU hears our voices. As always, Nothing About Us, Without Us!

Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
1101 15th Street, NW Suite 1212
Washington, DC 20005
http://www.autisticadvocacy.org
732.763.5530

World clock for the start of the above meeting.

Registration is now open. The Town Hall will be starting in thirty minutes.

http://www.aboutourkids.org/about_us/public_awareness

What I noticed was the wording.

For those of you who don't know what the ads say, I came across an example.

http://www.autisticadvocacy.org/images/nyu-ad-campaign/asperger_large.jpg

Notice that it says that the center is in favor of identifying, treating, and preventing "psychiatric disorders and learning disabilities"

In other words, it throws Asperger's in with diagnoses that need to be cured, and says that they will do it.

This, once again, sounds like professionals who cannot deal with the fact that they are scared of people with AS, and trying to make parents just as scared, because we're different.

I think I missed the town hall, though. I just saw this.

That's a gigantic step backwards, for us.

Actually, we did succeed in getting the ads withdrawn in December: http://www.autisticadvocacy.org/modules ... ?itemid=23 This was a town hall to express what was wanted in future campaigns, but it turned out to be a largely censored activity with little redeeming value.

So do you think the ads are going to come back?

These ads? No. However, we are concerned that the next ad campaign may not be as autistic-friendly as we would like as well. We're going to have to give serious thought to how to address this. ASAN will be holding a panel discussion talking about some of these issues on March 23rd, at the Disability Studies in Education Conference in New York City. An announcement on that will be available on Saturday, but if you know someone who would like to indicate they will be attending now, they can contact us at [email protected]

But what about those of us that would like to be a part of something like this and don't live in New York? Do you know of anything like that going on in Arizona?

I'm going to try and make sure that the panel (which isn't a town hall or anything where the audience participates in that sense anyway) will get transcribed and put on our website. In addition, we're going to be offering an opportunity for people who didn't get their comments put up on the town hall due to censorship to post them somewhere. Not only that, but I'd be glad to entertain any other suggestions you might have for getting more opportunities to get people involved against this sort of stigma in the media. We do whatever we can to engage in people across the world - one of the things we've been trying to fix as of late is the fact that most of our chapter presence is on the East Coast.

Well, you'll have to let me know when you do this, and where exactly.

Thank you.

The information will go out over our updates listserv. You can sign up for that on our website at http://www.autisticadvocacy.org

Well, that was two days ago.

I attended, to find that they required me to register, which was a bit of a joke. I tried repeatedly to upload my avatar, which kept being rejected with a message about using the wrong file type. I tried PNG, GIF, then JP(E)G. I eventually realized that what they meant was: "We don't care to tell you our real reasons for rejecting your avatar. We just want to waste your time by placing an obstacle in your way. We are confident that it will delay anyone with AS from managing to join in."

So... I got registered, and found that I could now see a broken JForum site that had a single thread running, which had a couple of comments at the top from the "CSC Moderator" at the top. Although I was already late, the thread was still locked.

That's when it all went downhill. The page was auto-refreshing itself every few seconds. I found it almost impossible to read. I posted them a message saying that I would like to have contributed, but could not, due to the refresh problem. That message was ignored and nothing was done about the problem.

I realized, after a bit, that I could actually stop the refreshing by blocking JavaScript. That was a minor success. At least the page wasn't leaping in and out of existence while I tried to read it.

I stayed with it, trying to read what was going on, and watched Ari's (AutisticAdvvocacy) fairly early, single post being dismissed out of hand. (See the transcript).

Here I fell into the second (nth?) trap. The whole discussion was being forced to be a single, large page. As I had turned off the auto-refresh, I was having to refresh the whole page repeatedly, to keep up with what was being said. This was not helped by the "CSC Moderator" inserting a pair of pointless duplicated posts, every few "real" posts, which meant I kept having trouble resynchronizing with what I was reading. (Most of these spurious posts have been removed from the transcript.)

Finally, late in the discussion (as in ten minutes before the end of the two hours that had not started on time in the first place), I made a second post. This time I explained what I was and why I felt that they were misrepresenting the "adult outcome". I complained that they seemed to be taking no notice of feedback from adults.

Both my posts were totally ignored. There is a promise, at the end of the transcript, that: "If we were unable to address your questions during the forum we will answer you directly via e-mail." It is now two days, and I have had no acknowledgment of my existence. What is rather annoying, is that I spent some time over carefully wording my second post, but forgot to make a local copy.

I would find it interesting to know what actually happened. At one point, fairly early on, I am sure I noticed a quite large number of "members" registered. Only fourteen figure in the transcript. One has two questions answered and another, three. Then there are thirteen "Anonymous" questions, which makes a mockery of the whole business of registering. What happened to the rest? "Dr. Harold S. Koplewicz" seems to have almost exclusively "answered" the questions he wanted to answer. Why they bothered with the whole idea is beyond me.

What should I have expected? It was just a heavily moderated, amateurish fiasco. It gets them a bit of free advertising. They can publish their "transcript". They make no comment on how many questions they brushed aside.

Ah well, rant over.

There's now a message that they hope to answer every unpublished post within the next few weeks.

Hopefully it will be more than a "Thank you for your input, you were a valued participant of this forum. Please attend future events" blah blah blah.

I say we email them a link to this thread in protest.

It might be better to write up a letter and put it in the body of an email. People are less likely to spend the time to follow links and then read a long thread.

So we could sum up the points and send an email. Although I wouldn't be surprised if ASAN hasn't already drawn up a letter of complaint.

If they had, I would like to put my name to it.