Other People's Words

Transcript: AWA interview with Ari Ne'eman and Paula Durbin-Westby of ASAN

Posted in Uncategorized by Tera on November 7, 2009

This is a transcript of the November 2, 2009 appearance of ASAN’s Ari Ne’eman and Paula Durbin-Westby on AWA Radio with Sharon daVanport.

Sharon daVanport: Hello everyone and welcome to AWA Radio. This is Asperger Women’s Association’s official talk time. Today is Monday, November 2 and we have quite a busy night planned out for all of you, so we’re gonna get right down to business.

Our guest this evening will be Ari Ne’eman. Ari is president and founder of ASAN, the Autistic Self-Advocacy Network. Joining Ari later on the show is gonna be Paula Derbin-Westby. Paula is the Virginia director for ASAN and she is ASAN’s board member. Paula is also on the board of directors with us here at Asperger Women’s Association. Paula did say earlier she was wanting to make sure her connection was okay and that she would be calling in probably from her cell phone or a landline. Well, I do see that she just showed up on the switchboard, so it looks like we’re gonna do okay here. We’re gonna have both of them on. That’s good that we’re gonna be going as planned.

First of all, I want to go ahead and remind everyone that this evening is our monthly prize giveaway here at AWA Radio. Our sponsor is b-Calm Sound We’re just gonna take a couple minutes at the onset of our program this evening and welcome Curtis. Curtis is one of the tech guys over at b-Calm Sound. He’ll let you guys know exactly what he does. He’s going to be telling us what the prize giveaway will be, and a little bit about b-Calm Sound. Curtis, you still with me?

Curtis: Yeah, yeah. How you doing, Sharon?

Sharon daVanport: I’m well, thanks. I’m sorry I probably messed up this whole tech thing, but I know you’re the tech guru. That’s what we should call you: the tech guru.

[Laughter]

Curtis: That’s a pretty lofty title. I’ll do my best to live up to it. No, I’m a research engineer for b-Calm and I get to do a lot of the fun work. I get to do a lot of the product development. I work directly with teachers and parents, looking at new ways to help ADHD kids and kids and adults on the spectrum, too. So it’s a fun job.

Sharon daVanport: Oh, that’s great. For those who may not know about b-Calm Sound, can you tell everyone what products you have to offer?

Curtis: Yeah, yeah. Really what b-Calm is, is it’s about providing noise control in a way that really works as a positive audio intervention for people on the spectrum as well as ADHD. We have developed a group of tools called AudioSedation. What that is is it’s a pretty unique blend of sounds, both from nature and special noise-masking sounds we’ve put together that work to hide, disguise, mitigate if you will different noises from the environment that people with autism or ADHD would find disturbing or distracting or problematic. Pretty simple thing to use. It’s exciting for us to be able to provide it, and so far, we’ve seen a lot of parents and teachers that have used it very effectively.

Sharon daVanport: Wow, that’s just really nice to hear. I know that the winners taht we had last month, our first and second prize winner that was actually our very first winners of all, they have just spoken so highly of it. They really have enjoyed it, and I know that a couple others have ordered and downloaded some of the sounds from your website. It’s just something that they are really responding to nicely. These are people on the spectrum that I’ve been talking to. Can you tell us some of the sounds that you have to offer, and what the prize giveaways will be for this evening?

Curtis: Yeah, yeah. We’ve got four different tracks right now that the system is based around. It would be: wind in the trees, waves on the beach, rain and then the sound of driving. Those are kind of nature audioscapes, if you will, of things that we found were very positive, they were very reinforcing, but they also work well to cover bad noises from the environment.

The example would be a kid on the spectrum who’s trying to concentrate on his schoolwork, but maybe there’s a street ouside and certain noises from that street bother him. We’ve seen other instances where just having that nice, smooth background noise is very calming, and it’s positive reinforcement. So we built those four tracks around that.

For the two winners that would be the chosen ones tonight, I’m kind of excited. I’ve got a new track that I developed actually when a mother came to me and said: “My autistic son really likes the sound of a shower. Can you make an AudioSedation track that would be a bathroom shower?” So we did some work, did some recording, developed that. It’s actually not available to the public yet, but I’ve got the beta version ready to go and so I was gonna include that. So for your winners we’d like to offer them a free five MP3 download from our bCalm Sound site tonight.

Sharon daVanport: I wanted you to mention for our listeners, too: you have something that’s a first for b-Calm Sound coming up, and that is a conference in Iowa. Is that correct?

Curtis: Yeah, yeah. As much as we have a corporate side, we also want to be good stewards to the community in providing some valuable services. So what we’ve started is called The Peace Within the Noise Autism and ADHD Conference in Des Moines. That’s gonna be the first Saturday in December—December 5, I believe. It’s only $20, and we’ve got a great lineup of speakers that are talking really about practical services or strategies available for being better servants and better caretakers for our kids or family that would be on the autism spectrum or ADHD. Real practical, down-to-earth stuff. I think it’s gonna be a great conference maybe for somebody who just got diagnosed or their kid just got diagnosed, and they’re saying: “Where do I start? It’s such a big maze.”

Sharon daVanport: Wow, that’s wonderful.

Curtis: And you get free lunch with that, too.

Sharon daVanport: Oh, wow. That’s awesome. I know in the chat room I wanted to mention before we just headed on into the show that I see that someone says that they like the ocean waves and the sound of rain on a tin roof.

Curtis: That’s what is really exciting for me. We’ve got something that’s simple, it’s cheap, but it has some great affect. I would encourage anybody who’s interested, go ahead and pop on to our website and look around. If they’ve got questions, if they send an e-mail through that website I get those directly. I would be happy to follow up and assist them in any way I can.

Sharon daVanport: Wow. That’s just wonderful. I thank you, Curtis, for coming on and announcing all of this and letting us know the updates that are going on—especially about the conference that you guys are having in Des Moines. That’s just wonderful. And it’s only $20, you said?

Curtis: Yep, yep. It should be pretty easy, and hopefully very obtainable. If somebody wants to go but that cost is an obstacle, we’re gonna have scholarships available. We don’t want any reason for somebody who wants to be there for them to not be. Give us a call and do whatever you need to do. We’d love to help out.

[Conference and registration information]

Sharon daVanport: That’s wonderful. We’re gonna go ahead and announce the winners towards the end of the show. So I just wanna thank you so much for coming on and announcing all this for us.

Curtis: By all means. Anytime, Sharon. Have a good show, and best to your guests and your listeners.

Sharon daVanport: All right. Thank you so much. We’ll talk to you later. Bye-bye.

Curtis: Bye.

Sharon daVanport: All right, everyone. That was Curtis, and I really wanna encourage everyone to go over there to b-Calm Sound. They really do have some great sounds. The audio intervention system that they have developed actually was developed with autism in mind—not only ADHD and ADD, but, like I said, with the spectrum in mind. It’s been just a fabulous product for many, many people.

Well, let’s get on with the show. I want to go ahead now and bring on Ari and Paula, and they can decide on what order we’re gonna have everyone talk this evening. I know that we have so much to cover. I know I put out on the show description just a couple of things that Ari’s gonna be covering. Ari, are you with us?

Ari Ne’eman: Yes, I am. Thanks for having me on the show. It’s always a pleasure, Sharon.

Sharon daVanport: You’re very welcome. And Paula, you’re with us too?

Paula Durbin-Westby: Yes, I am. Can you hear me?

Sharon daVanport: Yes, I can hear you fine. I know when you sent me that e-mail earlier, you weren’t quite sure if the sound was gonna be okay. You sound really good. You do for me, anyway.

Ari, we’ve got a lot to cover tonight with you and Paula. Within the autism community, most people know about the controversy going on with Autism Speaks and the nationwide protest that has been occurring actually from coast to coast here in the US. Paula just organized a big protest that was quite a success in Washington DC, and then you have some updates about some autism news from Washington DC, including the status of health care reform. Where do you guys wanna start tonight?

Ari Ne’eman: Why don’t we start with ASAN’s protest in DC? Paula was the primary organizer on that, so why don’t I defer to her and we can talk about the very successful protest. And then perhaps I can give a perspective on how this is playing out in our national efforts to send a message to Autism Speaks and all others who would talk about us without us: that our community is here and we’re not going away.

Sharon daVanport: All right. Well said, Ari, as always. Okay, Paula, it looks like the ball’s been passed to you. Why don’t you tell everyone about the Washington DC protest?

Paula Durbin-Westby: Okay, great. The first thing that I am going to say is it was not completely an ASAN effort. It got started partly through another listserv and several individuals. But ASAN, as you know, spearheads a lot of protests and we’ve been doing so across the country, but I do wanna acknowledge Chuck Coleman, who was another primary organizer with me. And also the incredible support from the community of cross-disability organizations and parents and other people on the autism spectrum, and Ari for coming out with us.

The whole protest we organized a lot through an extended e-mail thread. We went back and forth and made decisions and planning so that everything came together, including transportation, accommodations for people. We ended up having over 20 people—mostly people on the autism spectrum and also parent supporters, some of whom are tired of the Autism Speaks rhetoric of fear and misinformation and comparing us to AIDS and cancer statistics, and some parents who were never really interested in Autism Speaks’s message anyway.

One thing we wanted to do was educate some of the walkers about the tactics and message of Autism Speaks, because it seems like a lot of people only know about Autism Speaks and don’t know about other alternatives and other organizations. Where we were set up, we were really in a good location on a street corner that the walkers would actually have to cross over to get fliers from us. Surprisingly, a lot of walkers came across the street and came and got fliers from us. One person I think handed out 250 fliers.

They came over and talked to us. Some parents came over and they were angry, and they listened to our message. We had people who were very good at talking to parents and others who came over about what our concerns with Autism Speaks are. Some of those went away having a new perspective.

Sharon daVanport: Paula, I know you touched on it just briefly about the fear and misinformation that Autism Speaks promotes within their organization about those of us the spectrum. If you could just briefly run down some specific points that you’re trying to bring to light about Autism Speaks to help educate everyone.

Paula Durbin-Westby: Okay. Well, there are a few things everybody knows about: that recent “I am Autism” video that’s [got?] a disembodied voice of autism that uses threat tactics primarily aimed at parents of autistic children. The voice speaks in this creepy tone, and to me, it sounds like somebody who’s broken into a house and is threatening the people there. Some of the threats include: robbery, pain, relishing desperation. They’re talking about people on the autism spectrum, and you wouldn’t get away with saying that with any other disability.

Ari Ne’eman: And we have as well that old, familiar canard: in the video the voice says “We will rob you of your children and your dreams,” a very familiar idea that autistic people are stolen and somehow there’s a non-autistic person inside of us or that’s been taken away, and some sort of shell put in its place. Which is, I think, a very damaging thing. I list the idea in fighting the Ransom Notes campaign and fighting other, similar campaigns that send the message that we’re not fully human, or not fully present in our own bodies. I think a lot of that dehumanization speaks to violence as well, and encourages it.

Paula Durbin-Westby: Right. Autism Speaks perpetuates that, so if at one point that was a common misconception, they build on it, and rather than trying to rectify the situation, they make it worse.

Sharon daVanport: Correct. Yeah, I agree with that, Paula. I was going to say, in response to your statement that you made, Ari, I know that someone made a comment that they believe that the rhetoric by Autism Speaks is more insulting to members on the spectrum than their families.

Ari Ne’eman: Well, I think that’s certainly the case. One of the things I would point out here: we tried to craft a message that would really communicate the problems with Autism Speaks to several populations, and I just wanna briefly say what our message was before handing the discussion of what happened at the protest back to Paula.

We really tried to craft a message that would explain things to parents, explain things to self-advocates, explain things to unaffiliated individuals, and there were really three major parts. Number one: Autism Speaks talks about us without us. It’s an autism organization without a single autistic person on the board of directors or its leadership. You wouldn’t want the NAACP with all white people or the National Organization of Women with all men. Why should autistic people deserve less?

Number two: it’s exactly the kind of fear and stigma as a fundraising tool that Paula was just describing—the “I Am Autism” video is a perfect example. The Autism Speaks “Autism Everyday” video, in which an Autism Speaks executive describes wanting to place her child in the car and drive off the George Washington Bridge, and only not doing so because she has a normal child as well, and must somehow persevere on because of that. You see Autism Speaks’s public service announcements comparing having an autistic child to having a child in a fatal car accident or being struck by lightening.

Parents and families face very significant challenges, and we are their allies in fighting those challenges, mainly because it’s us who are facing those challenges as well. But at the same time, that’s no excuse for that kind of dehumanizing and damaging, and quite frankly, offensive and unethical rhetoric.

And finally—and I believe that this is truly the most effective piece of messaging with the walkers—only four percent of the money in Autism Speaks’s operating budget and the money that was raised on Saturday and the money that all the other Autism Speaks walks and donations goes to services for individuals and families. 94% goes to things that have no direct impact. That are not services, that are not supports, that are not education for individuals and families. Things like genetic research into trying to create a prenatal test. Things like those sorts of awareness without acceptance videos that demonize autistic people.

I really think that is an area in which Autism Speaks exploits families as much as they’re exploiting individuals on the spectrum. The families that were walking in that walk, they were walking in the hopes that they’d have better services, better educational opportunities for their children. Quite frankly, Autism Speaks was betraying them as they betray us by misleading them in that respect.

I just wanted to communicate what our major talking points were in that messaging. Paula, sorry for interrupting you. I just wanted to get that out there. Let me hand it back to you to discuss a little bit more about what happened on Saturday that made it a tremendously successful protest.

Sharon daVanport: All right, Paula.

Paula Durbin-Westby: I’ve been having fun writing in the chatroom. [Laughter] I was listening to you, too, Ari. One thing that happened that was really interesting: we contacted every single media outlet that we could. We were in hopes on Saturday morning, but we didn’t have any definite confirmation. By the end of the day, we had three independent filmmakers, one of whom came up from North Carolina, TV, radio, magazine and newspaper. There were seven that I counted. Did you get any more than that, Ari?

There was a lot of interest. Although when you look at the TV, one or two people were interviewed. But they actually got footage and they talked to a lot of people about our concerns. The message is getting out there more, that there are people that don’t agree with the business as usual tactics in order to fund cures for autism and that sort of thing. That was a pretty exciting development.

A lot of the walkers that were going by, they were walking in the walk for autism, but they were going by and giving us thumbs up and waving at us and taking pictures of us with their cell phone.

Ari Ne’eman: I think some of them will come out and join us next year.

Paula Durbin-Westby: I think that’s quite likely. Parents are some of my biggest supporters. Sometimes I get a little bit nervous about doing these sort of things, and I’ll get text messages from my friends who are parents of autistic children and they say: “You have to do this!” [Laughter] So it’s very encouraging to see that.

And we made a point of stressing that parents and the walkers are not who we’re protesting against. We’re protesting against the rhetoric, the tactics, the uses of the funds that Autism Speaks raises. Not at all against parents and families and communities.

Ari Ne’eman: I just wanna let people know I’m pasting some of the media coverage into the chatroom now.

Sharon daVanport: Okay. Well, Paula, I was gonna ask you real quick: You said that initially some of the parents were angry that they saw protesters out there. Of course, they didn’t know until they approached you why you guys were there. As you explained to them, what was their take on it afterwards? I know that Ari said that when you guys pointed out some specific points like only 4% [of the funds raised] goes to family support and things like that and 94% does not. What was their take on it? Were most of them curious to know more? Did you have pamphlets to give to them that explained more?

Paula Durbin-Westby: Yeah. We had a flier about why we are protesting against Autism Speaks, and we included those statistics, which you can get right from looking at the Autism Speaks website. Some parents and some people who stopped were very surprised and they said: “If this is true, it’s not right. It’s almost a reverse of how the money ought to be spent. We thought it was being spent to help people on the spectrum or to help parents and families.”

I was not there, because I was doing other things—kind of help organize and talking to the media—but people told me afterwards that one parent came over and said: “Shut up!” which is what we’re being told by Autism Speaks anyway. But people talked with that parent, and she ended up apologizing and she also ended up understanding where we were coming from. So she was very angry and frustrated, but once she understood what our position was, she was more supportive of it.

Sharon daVanport: Do you know how many people were actually involved in the walk for Autism Speaks that actually observed all of you there? Do you have a number on maybe how many were involved?

Paula Durbin-Westby: I don’t know. Somebody in the chatroom can look that up.

Ari Ne’eman: We do know that there were over 20 people who came to protest, including some folks without any direct connection to autism, but because of their experiences in the cross-disability community, felt that they had common cause with us. As a matter of fact, Bob Williams, the former commissioner of the Administration on Developmental Disabilities came out to join us, which we really appreciated, as he’s a very prominent leader. Very well-respected and that we certainly respect and appreciate. And it said to us that people with disabilities, advocates, regardless of our background, [are going to?] be sticking together, and that we face similar struggles, and together we can find similar solutions around empowerment and civil rights.

Sharon daVanport: I was also curious as to how many people were involved in the actual walk for Autism Speaks, too. I bet we could get that from the website, actually. How long were you guys out there?

Paula Durbin-Westby: To me it looked like there were hundreds. I actually expected that I would see more people walking, but they sort of came in different clumps. At one time I think the main body of the walk all came. It seemed like there were several hundred people, and it didn’t seem as huge as what I thought it was going to be.

Ari Ne’eman: According to [unknown], their site says 7,500.

Sharon daVanport: Wow. That’s really good. That’s so wonderful to hear. The message is so important to get out there. You think about the 7,500 and then you think about the media coverage, the independent filmmakers that were there that will take this information and hopefully do something with it and get the word out, along with the walkers there looking into it more too.

Hopefully this will force some changes in Autism Speaks. I really hope that it will. I don’t mean to sound like a pessimist or anything, but I don’t see Autism Speaks going anywhere. But perhaps this will force their hand at making the needed changes. If they wanna say that they’re “Autism Speaks,” then they need to live up to their exact title of their organization.

Ari Ne’eman: Sharon, I think in a lot of ways what we will probably see are some token changes in the near future. They view themselves as the undisputed leaders of the autism world, by virtue of the fact that they present a tremendous amount of power and privilege. They were founded by the head of one of the three largest media conglomerates in the world.

And so they view this as just a minor rebellion that they want to buy off. They may put a token autistic person on their board. They may make a show of making some small grant which won’t really change the number and amount of money they’re putting into services. It won’t change the percentage of service provision support as opposed to eugenics support. But they will try very much to call attention to whatever fig leaf they put together.

I think what we’re going to need to do—and what we’re going to need to see—is to continute to get our message out; to continue to protest; to continue that struggle; to communicate with them. We’ve made it clear that if Bob Wright wants to sit down—and he’s the person in charge there—that we’ll sit down and talk with him. But at the same time, to be very clear that we are not going to be bought off. That autistic people represent the authentic voice of the autism community, and that this needs to be responded to with more than just some kind of token effort.

Sharon daVanport: Have you heard from anyone within their organization at all, Ari and Paula? Have you guys heard from anyone?

Ari Ne’eman: What I’ve done in the past is I’ve communicated with some of their senior leadership, primarily because their senior leadership has a habit of telling the media that we don’t want to talk to them or that we’re not willing to negotiate with them. And what I’ve communicated to their senior leadership is we’re very much willing to sit down and talk to them. What we request, however, is that they bring Bob Wright to the table. Bob Wright is the chairman of their board, Bob Wright is where the money and the power comes from, and Bob Wright is the one that sets policy.

When Autism Speaks was founded, and Bob Wright announced that he wants to make a world in which autism is a word that is only found in the history books; that he wants to “eradicate” the autism spectrum—these are his words, prominently quoted in their press releases—that policy really came down from him and it shaped the entire organization.

As we see it, if Autism Speaks wants to make serious changes, Autism Speaks needs to bring Bob Wright and the senior leadership of Autism Speaks to the table, and we will be glad to sit down with them. At the same time, we’re gonna really stress here that if you’re going to run an autism organization, it makes sense that a significant percentage—not just one token individual, but at this point they don’t even have that—a significant percentage of your board—the general standard in many disability organizations is half—be people with the disability that you are culling from. We think it makes sense that if you’re raising money in our name, at the very least a majority of that money go towards initiatives that have practical impact on our lives like services and supports. And we think Autism Speaks needs to speak clearly to our community, and admit fault—admit that there’s something problematic about claiming that the people you’re purporting to speak for are less than fully human.

Those are some of the things we’ve said to them. I don’t think they’re ready to listen.

Sharon daVanport: Talk about this town hall meeting. What about this town hall meeting? I’ve received some e-mails. I know I put you in touch with a friend of mine who actually signed up for this town hall meeting. Autism Speaks is going to be holding this national town hall meeting that’s going on in several cities. They’re gonna actually have satellite cities involved in their big town hall meeting, and they are saying that this is specifically to bring to the table the concerns and the thoughts and the feelings of people on the autism spectrum.

Ari Ne’eman: Actually what they’ve been saying is that it’s specifically to bring to the table people who are concerned with adult issues. If you look at the people Autism Speaks is inviting, the vast majority are parents and professionals. They held a very prominent planning meeting and of the 80 people that were involved, I think they had maybe one or two people on the spectrum.

From our perspective, Sharon, I have to ask the question: How can you claim to set policy about us; how can you claim to have some [unknown] moral leadership; to speak as to what is best for us and for our community when you don’t involve us in the serious process of decision-making?

I think this town hall is just another example of a fig leaf on the part of Autism Speaks. I think there are a lot of very good people who are involved with this town hall—a lot of good organizations. The organization for autism research, a lot of good local organizations that are involved. But I know that I will not be going. I know that other ASAN activists will not be going, and quite frankly, we encourage our supporters to call those that invite them to the Autism Speaks town hall and say: “At this time, given the real damage that Autism Speaks is doing to the autism community and to autistic people the world over, I do not feel comfortable legitimizing this organization. I don’t feel comfortable working with hate groups.”

Sharon daVanport: As members of the autism community, Ari, when will we know that the time is right? What will be the things that we will see coming from Autism Speaks? Say they have another town hall meeting next year, and we want to decide if it’s time to go ahead and participate in something like that. What changes will we have seen within their organization that will tell us we can go ahead and make an appearance to see what’s going on? Can you name some of the changes that

Ari Ne’eman: Earlier today, I participated in a conference call of a cross-disability organizing committee, which carries national groups—some of which very prominent, some of which very well-known on disability issues from across the country, and we talked about this. One of the things that came up was the fact that it is a commonly accepted standard everywhere in the non-profit world with the exception of the autism world, in particular Autism Speaks, that the people that are being talked about are the ones that are in charge of the process.

Personally, I don’t think it’s the only litmus test, but I think a very good litmus test is when Autism Speaks commits to having at least half of their board members be on the autism spectrum and be people who have a history in our community, people who are active in our community, people like yourself, Sharon, people like Paula, a wide variety of others. I think that when those people feel comfortable connecting with Autism Speaks; when they’ve seen that they’re moving their money away from eugenics and toward services; when they see that they make a public apology about the kind of damaging rhetoric they’ve engaged in, that’s the time that I think it’s going to be necessary.

Until then, though, I know there are a lot of really great disability groups, a lot of really great parent groups, a lot of really great self-advocacy groups, a lot of really great professional groups. I think those groups deserve our time. I think those groups deserve our attention. I guess I can’t figure out why I would want to spend my time and my focus with an organization that wishes I didn’t exist.

Sharon daVanport: Right. I know I personally was contacted and sent some information and asked if I was going to be attending and sent the registration and all that. I have some friends who’ve decided that they just wanna go to see what’s going on. They feel that maybe they can have an opportunity to say something, but I declined. I personally declined. I have the same train of thought as you, Ari. I really believe that until I see something of significance, I truly don’t wanna put myself out there. Personally, I would feel like I’m being used. Like: “Oh, let’s get all these autistic individuals in here,” but then really, what are they gonna do about it?

Because this isn’t the first time this has been brought up to Autism Speaks, and they still didn’t make the changes. I know that it’s gone to a much larger scale this time around. And hopefully that will help to guide them toward these changes, but again, I haven’t seen anything in just the few years that I’ve been active in the autism community.

Ari Ne’eman: I think that’s a very good point. I think you and the folks at AWA, just like the folks at ASAN and at other self-advocacy groups are folks who are really working to try and create a better world for our people. And I know that I would much rather put my trust and my efforts with folks like yourself, Sharon, and folks like the great people in our community who are working hard to try and create a better future for autistic people everywhere. That’s my perspective. I think that’s the perspective of a lot of folks on the spectrum. We’ll see what happens.

Sharon daVanport: Are you guys still organizing or is anyone else organizing any more protests that you know of?

Ari Ne’eman: Actually there was a spontaneous protest of adults on the spectrum not connected to any particular organization in Arizona yesterday, and we’re going to be holding a protest in New York City, I believe on November 17, which we’ll be announcing information on in the very near future of Autism Speaks’s big concert with Bruce Springsteen and Jerry Seinfeld.

Sharon daVanport: Oh, okay. I was wondering if you guys were going to do anything with that. I know that there’s been a lot of bloggers out there blogging and calling upon Bruce Springsteen to reconsider his stand on this. People in the entertainment business and Hollywood, they don’t know these facts. They truly don’t. I think they really think they’re doing something good, and they don’t know this information. They don’t know the facts.

Ari Ne’eman: I think that’s very true.

Sharon daVanport: Dana Commandatore of RethinkingAutism, she has a great blog going on over there, and she did that awesome video that’s been circulating around the Internet. I know she has some really good blogs going on about calling upon Hollywood to really think about supporting [Autism Speaks] at this time for the PSAs, their stance that they’ve had thusfar.

Ari Ne’eman: Absolutely.

Sharon daVanport: Well, Paula, are you still with us? I see you chatting away over in the chatroom.

Paula Durbin-Westby: Yeah. I switched over to writing instead of talking.

Sharon daVanport: [Laughter]

Ari Ne’eman: Paula, if you feel comfortable, would you be wiling to—and I’ll shut up, I promise—would you be willing to talk to some of the people here about what goes into planning a protest. I think that you’ve just done such a tremendous job making the DC protest a success that a lot of the folks who are listening, a lot of the folks in the community, could really benefit from your expertise if you would feel comfortable sharing some of that.

Sharon daVanport: That would be awesome, Paula, because then perhaps those listening, if they want to organize something in their community, they can. So, how did you do it?

Paula Durbin-Westby: First I built on all the other protests that have gone on before. There was one in Portland, Oregon, there was one in Boston and there was one in Columbus, Ohio before the DC one. So I talked to all those organizers and got their best ideas.

What basically you need to do if you’re going to protest is find out if you need a permit. In Washington DC on national parkland, you definitely need a permit, and you need to stay within the area of the permit. You need to really make sure that they give you a spot that is going to be useful to you. When I talked to them, I said: “It is not going to help for us to be two blocks away, because we need to protest them, and we need them to be able to see us.

Once I secured that, then putting out the information to all kinds of organizations—not just autistic-oriented listservs but cross-disability listservs, friends, family, parents. I wasn’t planning to do this, but I inadvertently announced it on the Autism Speaks bulletin board through Twitter somehow.

Ari Ne’eman: [Laughter]

Paula Durbin-Westby: I’m not as used to Twitter, because immediately it said that I had sent it to 10,500 people on the Autism Speaks bulletin board. So just, yeah, go ahead and do that. Why not?

Sharon daVanport: You’re probably banned from there now.

Paula Durbin-Westby: [Laughter] I might be recruiting from there, because I’m very interested in talking to parents and family members who I read different things or who are friends of mine who are just really not into the Autism Speaks agenda, and are looking for something else.

Oh, I remember what I was going to say. When people donate so much money to Austim Speaks, there are little local chapters of the Autism Society and other groups that aren’t getting that money. They’re the ones that do the on-the-ground seminars and how to access Medicaid wavers and things like that. All those programs [unknown] when all that money gets sucked into the larger organization.

But back to the organizing. So we had a core group of people and we talked among ourselves about what we would do and what kind of ettiquite we would follow. We wanted to be firm but polite and we agreed no yelling, no tossing burritos back at them.

Sharon daVanport: [Laughter]

Paula Durbin-Westby: It’s being called “the burrito incident” but it was really a wrap, somebody pointed out. We need to call it that. [Laughter] If somebody comes up and gets angry and yells at us, then we’re going to be polite with them and non-confrontational in that way, so we had that all taken care of.

For people with mobility or accessibility needs, we made sure that we had rides and other accommodations. That’s always really important when we’re talking about Nothing About Us Without Us and we’ve got people with other needs, then we need to be able to step forward and take care of that. There was an incredible amount of support with different people doing different things, making signs. We have an excellent artist who made a bunch of signs. And then putting out press releases, putting them out in a timely fashion, following up with calls to the media, following up with more calls to the media. And we also sent them the recent condemnation of Autism Speaks’s “I Am Autism” video that was signed by over 60 disability rights organizations. We sent that out to the media.

Sharon daVanport: In the chatroom, there’s a great question. It looks like they’re asking about what we could do to have a virtual protest online. That’s something that we should think about too, like really organizing something.

Ari Ne’eman: I think that a virtual protest is something the autistic community has been doing for a very long time: blogathons, blogswarms and so on. I think they can be very useful in terms of building awareness in our own community. At the same time, I think for getting media attention and for communicating to the people who are walking, communicating to Autism Speaks’s supporters, to bring it beyond preaching to the online choir, as it were. Although it’s not totally that. I think we reach out to a lot of new people. It isn’t just the people who we would be pulling away from them [Autism Speaks].

It’s important to have some kind of on-the-ground presence. I know what ADAPT has been doing, and they’re probably the leading cross-disability grassroots activist direct action group: they have been doing blogswarms in conjunction to their on-the-ground protests. So I guess I would be very interested in seeing if we could perhaps do virtual protests as a way of complementing on-the-ground protests. I think virtual protests are a great way of building up and even if an on-the-ground protest isn’t possible. But I do think that when it’s possible, there’s really no substitute for putting people on site, in person.

Sharon daVanport: Right. Are you, UncommonSenses25 [in the chatroom] from Florida? I know that there’s a huge walk now for autism kick off going on in Florida, and has the NFL involved in it. I think I sent you an e-mail about that, Ari, last month. I saw that on the Autism Speaks website.

Ari Ne’eman: I may have missed it. It’s been a busy month. I do apologize.

Sharon daVanport: That’s okay. I’m wondering if there could be something down there [in] Jacksonville, Florida. It looks like it’s going to be s huge one, because the NFL is involved. That would be awesome, wouldn’t it, if we could get some people on the ground out there? I’ll see what we can do at the AWA, Ari. I’ll see if we can round some troops up.

Ari Ne’eman: We’d be glad to provide any technical assistance on how to put it together or anything like that.

Sharon daVanport: Right.

Paula Durbin-Westby: Definitely. When is that Jacksonville one?

Sharon daVanport: It’s coming up really soon. I’m thinking this weekend. I don’t know if we could do something, but I know it’s gonna be soon.

I wanna know a little bit about the upcoming protest with the big concert with Bruce Springsteen and Jerry Seinfeld. That is going to be, you said, the 17th of November? Is that correct, Ari?

Ari Ne’eman: I believe so. I’m just double-checking myself right now, but yes, I believe that is the case.

Sharon daVanport: At Carnegie Hall?

Ari Ne’eman: Yes, November 17 at Carnegie Hall. We are really only turning our attention now to organizing this because our focus has been primarily on DC prior to now and making that protest a success, which it certainly was. We are going to be working with the cross-disability community in New York; we’re going to try and use this as an organizing opportunity to bring people out and create a stronger ASAN presence in New York. We’re going to basically do the same thing we did in DC: get a permit, be very visible, hand out fliers, talk to media, and communicate the message that this organization, Autism Speaks, does not speak for us.

I think if we continue to be visible, if we continue to have a presence at the walks, if we send a message to celebrities and politicians and other high-profile individuals that believe that their reputations will be enhanced by working with Autism Speaks that the opposite will be the case, we’re gonna start making some progress. It’s all a matter of keeping the pressure up so that, in due time, we can bring them to the table in good faith instead of with the kind of token measures that they try and do now. If any of you are in the New York City area, please mark off November 17, feel free to e-mail me if you’d like to get involved. If not, if you’re on AWA or ASAN’s e-mail lists already, you should be hearing from us very soon.

Sharon daVanport: That’s right, and we’ll be sending out some information. Ari, I know that you always keep us in the loop with that and whatever you send our way, we’ll go ahead and send out to everyone at the AWA as well. Can you put up your e-mail address?

Ari Ne’eman: Absolutely. Absolutely. aneeman AT autisticadvocacy DOT org. Our website is www.autisticadvocacy.org I look forward to hearing from anybody who has an interest in our work, and anybody who’d like to get involved.

Sharon daVanport: Ooh, it looks like at Ranger Stadium in Texas—that’s where I’m from, Texas. Hook ’em horns!—it looks like they’re doing a protest there.

Ari Ne’eman: Oh, that’s fantastic.

Sharon daVanport: Oh, not a protest. It looks like a walk. Let me see if I’m reading this right.

Ari Ne’eman: We should try and get a protest. [Laughter]

Sharon daVanport: Yeah.

Ari Ne’eman: I have to tell you, Sharon, I love the dual modalities that we have here on the AWA radio show. We’ve got the chatroom, we’ve got the audio. I was testifying to the EEOC on Friday in Philadephia, and they had a CART system&CART is an automatic transcription system utilized to ensure accessibility for the Deaf and hard of hearing. So if we could find some way of connecting that to this, too, we could do interesting things.

Sharon daVanport: It’s just so funny that you said that. Tera, she is a blogger and she loves to transcribe. We have officially welcomed her; she asked if she could transcribe for AWA’s radio. She’s gonna be doing that now. and she’s gonna transcribe this broadcast as well. I just Twittered yesterday the link to the Barton interview that I did. So we now are going to have our radio shows transcribed.

Ari Ne’eman: Fantastic. Fantastic.

Sharon daVanport: Yeah. That’s really gonna help a lot of people. I know that that’s been a real huge, huge challenge for a lot of people to participate in the radio broadcast, and sometimes they have to turn down the volume and just chat in the chatroom. That’s gonna really help a lot, for people to get the information.

Ari Ne’eman: Well, kudos to Tera and thank you very much. Certainly a round of applause.

Sharon daVanport: Right. I know. She’s just awesome to volunteer to do this, and we’re just so grateful that she did. It’s been something that’s ongoing for a lot of people who wanted to get that information.

[Transcriber’s note: Aw shucks. Though as Chally says: No need to thank me for providing basic access. And I wish I were faster].

Paula Durbin-Westby: You notie in the chatroom, we’re beginning to organize the protest in Dallas. Somebody said something about Dallas in three weeks, and I said: “Let’s organize it right now in the chat room. Who’s with me?” And then I said: “You might think I’m kidding,” and people are going: “Yay!” and they’re looking up stuff and going: “The next one is in Arlington! Let’s get that.” People are posting links.

Sharon daVanport: So what is the date, so we can tell our listeners who are not in the chatroom?

Ari Ne’eman: Let’s get that date. Whenever ASAN and AWA Radio get together, good things happen.

Sharon daVanport: [Laughter] Wow. It’s just like an overload, but it’s a good overload. It’s awesome. I love this.

Paula Durbin-Westby: It’s at Rangers Ballpark on the 14th.

Ari Ne’eman: Yeah. November 14. That’s going to be a tight turnaround, but if we can do it, that’d be excellent. Let’s see if that could be doable. That would be excellent if it’s feasable. Let’s try and see if there are folks on site. I encourage people if they are on site to e-mail Sharon (sharon AT aspergerwomen DOT com) or myself (aneeman AT autisticadvocacy DOT org) or Paula (pdurbinwestby AT autisticadvocacy DOT org) to try and put something together. We’d be glad to help with media outreach and calling local disability groups, maybe getting some of their national offices to call if we have a relationship with the national office. I know the National Council on Independent Living, for example, has been tremendously helpful, putting us in touch with local disability rights advocates in areas where we’ve been doing protests. And other national disability organizations that we work with in DC often undertake similar efforts to support our cause.

Sharon daVanport: Very good. Very good. Well, gosh, Paula, it looks like we’re gonna be really calling upon you for all this expertise you have in organizing these protests. [Laughter] This is great.

Ari Ne’eman: Yay, Paula!

Paula Durbin-Westby: I’m very willing to help, because I just believe in just saying: “Let’s just do it.” That’s how I got into organizing the DC walk. I thought: ” If it’s going to happen, we just need to start doing it.” So whoever’s in Dallas, you need to start looking into getting a permit and once you’ve got your place, we can start putting out e-mail announcements, press releases, etc. Contact us at ASAN and we can help with any of that, because we’re getting a lot of experience recently.

Sharon daVanport: Well, I’ll tell you what I’m gonna do. I’m gonna go ahead and send out a mass e-mail to our groups on Facebook and MySpace and everyone on our e-mail list these dates that we’ve talked about here on the show, and go ahead and see what kind of response we get. I know we’ll get people on board.

Ari Ne’eman: That’s fantastic.

Sharon daVanport: Right. This is gonna be really nice. This is exciting, isn’t it, Paula? Isn’t it, Ari? It’s just really nice.

Ari Ne’eman: Absolutely, absolutely.

Sharon daVanport: We have to look at the bigger picture here. Something that I’ve had some people ask me: “How do you feel comfortable with the stance that you’re taking?” This is a personal question to me that I’ve been asked. How do I feel comfortable with the stance that I’m taking in regards to Autism Speaks, because they’re an autism organization? And I’m saying: “That’s the conundrum right there. They’re purporting to speak for us, and it needs to be brought out that that is not what they’re doing.” Bottom line: it’s really simple. There’s nothing convoluted or exaggerated about any of this. It’s pretty basic, it’s pretty simple.

Paula Durbin-Westby: Right. And the whole idea of “speaking for,” I’m coming to think it’s got limited usefulness. Because what we do at ASAN and other autistic advocates do is we advocate for people. We don’t speak for them.

Sharon daVanport: Nice.

Ari Ne’eman: I think we help empower people to speak for themselves, and I really think that that is the essence of the disability rights message: that we do want supports, that we do want help, but that we want it to be on our terms, and that we want it to be the kind of support and help that empowers rather than the kind that infantalizes or that fosters dependence. That’s been the disability rights message for a long time, and I see neurodiversity and autistic self-advocacy as an outgrowth of disability rights, which is an outgrowth of civil rights.

Sharon daVanport: Nice. It’s true.

Ari Ne’eman: Could I just add one more thing, Sharon and Paula? I just wanna take a moment to give thanks to the ASAN organizers who organized protests before the DC one: the first one being in Portland, which was very successful and was organized by ASAN Portland and their leader there, Elesia Ashkenazy (elesia_ashkenazy AT yahoo DOT com); the next one being in Columbus, which was also very successful, which was organized by ASAN Ohio State University/Central Ohio and their leader Melanie Yergeau (myergeau AT gmail DOT com, asan DOT ohiostate AT gmail DOT com), as well as their other local leaders as in Portland. A third one being in Boston, and I’m not sure if I have permission to share the name of our leader there on the air, but we have some great leadership in Boston, and it was organized by ASAN New England. I think Paula would agree: It would’ve been very difficult for us to do what we did in DC without the support and the advice and the expertise that was built up there. So I just wanted to take a moment to really give credit where credit is due on that front.

Sharon daVanport: Very nice.

Paula Durbin-Westby: Very much credit, and thanks to those people that went before us, because I leaned heavily on what they had learned to help organize the DC protest.

Sharon daVanport: Nice. Well, gosh, Ari. I know you have some news that everyone is waiting on when it comes to the Washington DC—

Ari Ne’eman: We can’t quite discuss the news.

Sharon daVanport: Mum’s the word.

Ari Ne’eman: Right. We’d better stop talking. [Laughter] We don’t talk about that on the air yet. But in respect to the news that I think you have in mind now that you’ve clarified, yes. Health care reform is moving forward, and it’s looking like there are a lot of things in it that are going to be very good for people with disabilities.

What we are seeing in respect to the health reform discussion is that the two Houses of Congress are both in the midst of putting together their final health reform bill. The House has introduced what will probably be reasonably close to the final legislation, and will be voting on it relatively soon. The Senate is in the midst of, under leadership of Senate majority leader Harry Reid, combining the Senate finance bill and the Senate HELP bill—Health, Education, Labor and Pensions being the committee in question—into one Senate bill, which will be introduced very soon.

We see a lot of things in that that are going to be very good for people with disabilities. For one thing—and this has been the case with all of the health reform bills—pre-existing condition discrimination will end, and this is incredibly important. The single biggest obstacle to people with disabilities participating in the world of employment, getting access to appropriate health care, getting access to society in general has been, in a lot of ways, access to the private insurance health insurance markets.

And pre-existing condition discrimination, which those of us with various conditions have our premiums jacked up to the extend to which if you are going to need to use health care, if you’re going to need health insurance, you can’t afford it, has been the single biggest obstacle. All of the health reform proposals on the table that are being seriously considered for passage will end pre-existing condition discrimination. So that’s vitally important.

Sharon daVanport: Wow. That’s so nice, Ari. Not too long ago, I looked into purchasing some private health care for my son who’s on the spectrum, and I tell you what: it was a nightmare. They wanted thousands and thousands of dollars, just as a cap to cover him because he’s on the spectrum.

Ari Ne’eman: And then there’s the question of what kinds of services they will cover. That’s another very big issue. In that sense, I think I’d like to call particular attention to the provisions in the House bill and the Senate Health, Education, Labor and Pensions bill, both of which include—and the Senate finance bill does not as of yet; we’re hoping that when it’s combined with Senate HELP, this’ll be fixed—both of which include habilitative services—things like occupational therapy and speech pathology services—as mandatory benefits, mandatory areas of coverage for every health insurance policy sold in the new health care system. That’s another really crucial reform that hopefully will be a part of the final package that we’re advocating for, and will have a tremendous positive impact on children and adults on the autism spectrum.

Sharon daVanport: Ari, how will this trickle down to the states? Is there gonna be something in it to where the states can’t step in and then pooh-pooh it away? What does that look like? That’s something that worries a lot of people: “Will our state acknowledge it or will they find some loophole to where they don’t have to?”

Ari Ne’eman: Well, it depends on which part. There are some things that they will have to do. Pre-existing condition discrimination will end, it would appear, if memory serves, within five years of passage. The minimum requirements [and] coverage for each new health insurance policy seems to be something that will be present in every state.

However, there are some areas of very significant concern. One of them is that it appears that what will happen most likely, is tht as part of the effort to move toward universal coverage, we’ll see a significant expansion in Medicaid. States will be required to expand their Medicaid programs to cover more people t a higher percentage of the poverty line than they had been previously.

Now, in some senses, this is very good. It means more people will have health care. But there is a very big risk, and that risk is: home and community-based services, the single biggest source of disability support for adults with developmental disabilities, are funded through Medicaid and they are still currently considered an “optional” service. Now, if we’re going to be expanding state Medicaid programs and expanding eligibility for Medicaid—a good thing, something we need—states are going to have a lot more cost-pressures on them, and as a result of that, we may see more budget cuts to disability support programs.

o we’re trying to fight for provisions in the federal legislation that will prevent that, because that’s a very big concern of ours. Even though the reforms to the health insurance market are going to be applied to all of the states and that’s going to be pretty uniform, I am very concerned about how states are gonna respond to the new mandatory Medicaid expansion, and how that’s going to affect significant budget cuts in home and community-based services for adults with developmental disabilities.

Paula Durbin-Westby: I’m chatting about the permit for Arlington; somebody’s already found the site to get the permit, and I’m trying to see if I can pin anybody down to take it on, and also health insurance, diagnosis and other things. So it’s starting to turn into sort of a salad here. But if you all go off the air, I’ll take over. How much time do we have left, anyway?

Ari Ne’eman: Another 20 minutes. It depends on how much time you wanna stay, I guess.

Sharon daVanport: Yeah, and we can work with that. I think everything’s going well. My switchboard came back up! Thank goodness!

Ari Ne’eman: Mazel tov! [Laughter]

Sharon daVanport: I was really worried here, I’m telling you. It literally just disappeared on me. I was like: “Oh, no!” [Laughter] What were you gonna say, Paula? I’m sorry.

Paula Durbin-Westby: I think I already said it.

Sharon daVanport: Okay. [Laughter] Well, Ari, I also wanted to ask you about some of the DC stuff going on. You have so much information that you just shared with us. Can you let our listeners who may not be familiar with ASAN and the work that you do know why you’re privy to this infomration? What are some of the committees tht you sit on, or the advocacy that you do there in Washington?

Ari Ne’eman: Well, I have the pleasure of being actively involved in the cross-disability rights movement. We’re involved in policy advocacy on Capitol Hill, working closely with members of Congress and members of their staff on a variety of issues. Currently, our major focus right now is on health reform and on restraint and seclusion policy. In addition, I think we’ve certainly been very pleased to enjoy a good relationship with this current White House and their officials in respect to disability policy: people like Kareem Dale and Jeff Crowley and other members of the President’s domestic policy council that are concerned with disability policy and disability rights issues.

I think people forget this, [but] I think there are also a tremendous amount of folks in the federal beaurocracy who come from advocacy backgrounds. They definitely get our issues, because at a previous point in their career, they were the policy advocates. They were the ones lobbying government.

We have the pleasure of working in a lot of different contexts in those things. I personally sit on the steering committee for the Justice for All Action Network, which is a new cross-disability organizing coalition which consists of a wide variety of disability organizations, but is run—has a steering committee that is run by—the country’s leading self-advocacy groups: the American Association of People with Disabilities is there, ADAPT is there, the National Federation of the Blind, the American Council of the Blind, the National Association of the Deaf, Little People of America, and many, many others. And ASAN also has the pleasure of serving on that. That’s one of a variety of different coalitions we participate with inside DC that give us the ability to advocate effectively for the perspectives of the autistic self-advocate community.

I think Paula could speak to another really important area of advocacy we’ve been doing inside the Beltway, specifically in respect to her work representing the Autistic Self-advocacy Network in lobbying the Interagency Autism Coordinating Committee (IACC), which is the federal interagency committee responsible for allocating autism research dollars. It is an entity that, unfortunately, is not yet entirely friendly to our perspective, but that advocates—and, really, Paula has been leading the way on this and has been our primary person on this—advocates have been pushing hard and trying to make some real serious changes working with the members of the IACC to make it a more inclusive body and to make it a body that’s going to be responsive to autistic people’s real concerns.

Paula Durbin-Westby: You want me to say a little bit about that?

Ari Ne’eman: Sure, yes.

Paula Durbin-Westby: Since March 2008, I’ve rarely missed an IACC meeting, and recently I was invited to participate in a scientific workshop to discuss updating [their] strategic plan that is required to be updated every year. As far as funding is concerned, it’s a similar pattern: a lot of funding for genetic research, and much less funding for—they don’t fund anything, but they do funding recommendations, and I assume that that is done because they have some influence.

Ari Ne’eman: Yeah, they sort of decide what the funding priorities will be for NIH generally, yeah.

Paula Durbin-Westby: Right. Again, the funding for services and supports research is very minimal, and the funding for the genetic research and things like that is the bulk of the funding.

Sharon daVanport: Wow, that’s really good. Maybe this isn’t even a question that I should be directing to you guys, but when you talk about the funding, is that involving the grants that are given to the autism community?

Ari Ne’eman: No. This is involving research grants given to researchers on autism research. That’s the purpose of the IACC. There have been some proposals to broaden the scope of the IACC—to look at other policy issues beyond research—but that hasn’t happened yet.

One of the things that ASAN has proposed is to really shine a spotlight on services research, where research is gonna improve the quality of service provision and educational methodologies, and perhaps Paula could talk more about that.

Paula Durbin-Westby: I’ll quote some of my statistics here that I came up with. When I look at the recommended budget for causes and prevention, it’s $216m, almost 28 percent of the IACC recommended budget. They break down the strategic plan into sections. They have a question for each section, and the one for services is: “Where can I turn for services?” The last time I spoke there, I said: “Where, indeed? Not to the IACC, because they suggest a grand total of 3.27 percent of the recommended budget for services and supports.” The overwhelming amount of the money goes towards causes, prevention, biology and risk factor research, and other areas that don’t directly help autistics or our families.

Sharon daVanport: And Paula, that sounds really good in theory, but can you explain, when it comes to the bigger picture, why that is not as important as what you were talking about when it comes to actually providing direct services and support. When it comes to all the research and genetic tests and things like that, why is that not beneficial in the long run? Can you talk a little bit about that?

Paula Durbin-Westby: It’s not really beneficial to look for what genes cause autism when people are already here, people who have already been born are falling through the cracks on services and supports. They’ll need things that are practical that can help them now. I’ve heard parents say: “Oh, great. They found another autism gene. I need respite care for my child, and I need to know where to access services and increase in types of services and supports.” That’s a basic reason why.

Ari Ne’eman: I think one of the things that you’ve really continued to tell the IACC —and they haven’t always listened, but I think you have made some progress in that they’ve been forced to put together a services subcommittee, and they’ve allocated abeit at this juncture a still token amount to services research—is that research isn’t the problem. It’s where we set our research priorities. Services research—research around improving the quality of services—can have a tremendous impact.

What’s going to help people more? Creating an autism mouse model so that we have autistic mice, or looking at what are the best ways to improve the student on the autism spectrum’s transition outcomes? Or what is the best way to improve alternative and augmentative communication (AAC) technology methods? As a matter of fact, Paula, I think you helped arrange a special meeting of the IACC on AAC research, and it was a great success.

Paula Durbin-Westby: The strategic plan only mentions augmentative communication as a brief mention in “Picture Exchange Communication Systems can sometimes be used” or something like that. There was not one research area devoted to communication, and that’s one of the biggest challenges facing autistic people. So I usually bring up AAC every time I talk there, and finally they heard me and said they brought in two speakers to give a presentation about AAC. The IACC has been going on for a number of years, and this is the first time they had a presentation on it.

When we had the scientific workshop, we were divided into panels that each took on a section of the strategic plan, and the panel on treatments and interventions mentioned communication as an “emerging tool,” but there was no specific call for funding recommendations into communication technologies and access. That could be so beneficial to so many people in all areas of the spectrum, to have a wide accessible and affordable variety of communication tools. And that’s not happening, at least not yet.

Sharon daVanport: This is really good information, Paula and Ari. I just so much appreciate being able to host a show where there’s actual information that’s getting out there that isn’t always heard. We talk a lot here on AWA Radio about how sometimes our initial and first experiences, when it comes to relating with the autism community when we first get involved, it kind of molds our thinking. Unless we are given information—and correct information—like what’s being shared tonight, we don’t know that there’s other information out there that will help us see the bigger picture. We see this one thing. We hear just the word “research” and genetic testing, and all this sounds really good in theory. But when you get down to the nitty-gritty of it all, you really start seeing: Is that really providing the necessary supports now? Just like what you guys are talking about.

This is just so important. So many people, they have their first experience with Autism Speaks or Generation Rescue and all these different organizations that talk nothing about supporting people on the spectrum. So this is really good. I really appreciate you guys taking the time to come on and speak about these things.

Ari Ne’eman: Well, thank you. Thank you, Sharon, for having us on the show and thank you to AWA for doing the work that you’re doing. We advocates are working hard on a wide variety of fronts to try and create a better world for autistic people across the country and across the world. But at the same time, I think we also have to give consideration to what we want to really build in the space that these new legal rights, and these new supports and services, and this clearing of those exploitative groups is going to provide.

And when I see AWA and other social groups and other manifestations of autistic community and autistic culture, it makes me feel like we are not just working to improve technocratic matters of public policy, but we are standing in the vanguard to help defend and protect a people and a community and a culture. And in that sense, I believe that AWA and similar groups with their focus on social connections and community between autistic people all over the world are indispensible. Are absolutely essential. So I wanted to take a moment to thank you, Sharon, to thank AWA for its important work.

Sharon daVanport: Well, thank you very much for that. I know that we’re a new organization, so that we are working hard at trying to set our organization up to where we do just that. We’re looking to ASAN for a lot of our guidance.

Before we announce the winners of our contest as we’re closing up here, I wanted to go ahead and let everyone know that ASAN and AWA Radio will be having regular updates. You’re gonna be coming on regularly—I think we decided on maybe once a month, unless there’s something really big that you wanna just come on briefly and announce.

Ari Ne’eman: That sounds about right, yeah.

Sharon daVanport: Right. We’re gonna be hosting a regular update show with ASAN, that you will keep us apprised of all the Washington DC stuff going on with health care and all the good stuff with advocacy, and so a lot of our listeners and the autism community in general just need to know about these things. So we’re just really pleased that we’ve kind of partnered in that way with you guys, and we want our listeners to know that it’s gonna be something that we’re gonna be doing on a regular basis.

Paula Durbin-Westby: Great.

Sharon daVanport: Yeah. Well, listen, I wanna go ahead and announce our winners, so is there anything else you guys wanted to go ahead and say before we close down this portion of the show?

Ari Ne’eman: Just thank you very much.

Paula Durbin-Westby: Thank you very much for having us on the show. It’s really great, and I’m looking forward to doing the updates.

Ari Ne’eman: Absolutely. And if you’d like to find out more information about ASAN—sorry, I have to say this—you can visit our website at www.autisticadvocacy.org Thank you so much, Sharon.

Sharon daVanport: All right. Thank you, Ari. Thanks, Paula.

Paula Durbin-Westby: Thank you.

Sharon daVanport: All right, bye-bye. Okay, everyone. I don’t know about you, but I’m gonna have to go back and listen to this show probably two or three times to just soak in all the information that I received, because there’s just so much that we need to do and just to pace myself as a representative of the AWA, I want to really see where we can fit into all of this as well.

So now we’re gonna get to the fun part, everyone in the chat room. I am going to go ahead and Tricia Kenney, our Missouri director, was hoping that she could get a chance to call in real quick at the end of the show. She was going to announce our winners. She actually drew two names earlier, and I’ve got the names of the winners.

It looks like our winners this month for the b-Calm Sound downloads are Dr. Carolyn Fuentes and aspergers2mom.

Now, remember. The names that were in the chatroom tonight automatically get started for this month, so everyone who was in the chatroom tonight, your name has been entered for our next drawing. We’re gonna do this every month, so I want everyone to make for sure that if you know people who are signing in and listening to us—I know we have a lot of people who listen through our switchboard as well on the phone; they don’t listen through the computer, so they don’t sign in.

So what we plan on doing, just real briefly before we say our goodbyes, I just wanna let everyone know to let people know that even if they don’t wanna be in the chatroom and don’t wanna sign in and get a username at Blogtalk Radio, next month what we’re gonna do is, we are also gonna include people who listen through the switchboard, and people who even come into the chatroom and their login shows up as a Guest and then they have a number beside it.

The only thing that you need to do if you listen in the switchboard or you’re listening in as a guest in the chatroom for our next drawing, is you need to just leave a quick note on the AWA profile page. There is a little section where you can leave a quick note, and just say you listened to and then tell us the show that you listened to, and that you listened in on switchboard or you listened in at the chatroom as a guest. Tell us your name or contact information, whatever you feel comfortable. You can give just a first name, and then we will announce that, and if you’re listening, then you’ll know that you were the winner.

Just wanna let everyone know that we’re trying to include everyone, because a lot of people can’t sign in and their computers are not compatible with Blogtalk or something like that. We have dozens of listeners from the switchboard.

Before I forget, a lot of people can’t listen in to the show live through the switchboard or the chatroom, so if you go to our profile page and you listen later to our podcast, just leave a quick note that you listened to it, and your name will be entered.

That’s gonna do it for AWA Radio this evening. I wanna thank everyone in the chatroom. You guys are fabulous. This is AWA Radio, I’m Sharon daVanport, and we will see you next week.

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2 Responses

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  1. codeman38 said, on November 7, 2009 at 7:37 pm

    Wow. Again, thanks for this– this format is SO MUCH EASIER for me to process than the audio!

    (Honestly, it wouldn’t be nearly so bad if they actually used a service that had enough sound fidelity for consonants to be intelligible to me… seriously, it’s like the opposite of trying to decipher disemvowelled blog comments.)

    • Tera said, on November 7, 2009 at 8:01 pm

      No problem. I’m just sorry it took me so long.


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