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.

When I am alone, in public, this thing happens.

“You look like a lost puppy!” said a friend as I was looking for my seat in the college cafeteria. Once someone offered me a glass of water as soon as I walked in. Another time, a man pulled me off the street and forced me to sit down at an outdoor table and didn’t even ask me about the water—he just gave me a glass. And yes, there was that really bizarre time when I was in high school, and a teacher grabbed me by the shoulders, shook me and said to me V-E-R-Y S-L-O-W-L-Y: “The Sophomores. Are meeting. In the gym.” But what usually happens is, people—other white women, not much older than me, if they are older than me at all—call me “sweetie.”

“Here, sweetie,” says the woman behind the counter at Wendy’s, handing me my food. At a fancier restaurant, the waitress says “Follow me, sweetie” as she takes me to my seat. Men, I notice, don’t do this. They offer to help—”Are you okay?” “Here’s some water.” “Do you need help?” Older women just leave me be.

This does not happen if I am out in public with other people, even people my own age. I can’t show it to anybody I know and ask if they see it too. Even now I doubt myself. Does this really happen as often as I think it does? Am I reading too much into things? And what the hell is wrong with people being nice?

But it is not niceness. It is You don’t belong here, dressed up in the prettiest Emperor’s clothes. Your kind belong somewhere else. And I am lucky as hell to get this form, this quiet suggestion that I am in the wrong place instead of disgust or gossip or a punch in the face or attempted murder or a refusal to acknowledge me at all. Would a black woman who gave off the same cues I do be this lucky? A trans woman? A Muslim woman? A Latina woman? A genderqueer person? An older woman? A fat woman? A woman who dresses less androgynously than I do? A woman who dresses *more* androgynously than I do? A woman who lives in New York City instead of a small Nebraska town? A woman who lives in poverty? A woman less able to speak in similar situations than I am, or who doesn’t speak at all? A woman more able to speak in situations like this than I am? (Would she be thought of as an uppity bitch?) A woman with chronic pain? A woman who uses a wheelchair? A woman who responds to the stress of being out in public or the stress of being wished away in a more-obvious-to-other people fashion than I do? Or men?  Any kind of person I’ve forgotten? Any combination of the above?

So, yes, I am lucky. And my luck could change at any time.

This is a transcript of Sharon daVanport’s interview with Melissa Barton for the Asperger Women’s Association. Melissa’s son Alex was voted out of his kindergarten class Survivor-style by his teacher, Wendy Portillo, in May 2008; Alex has Asperger Syndrome. The Bartons have recently filed a federal lawsuit.

Sharon daVanport: Hello, everyone, and welcome to AWA Radio. I am your host Sharon DaVanport and today is Monday, Oct. 26. Just a couple of announcements before we get started. First, I wanna remind everyone that next week on Monday, November 2, we will be having our monthly drawing for the AudioSedation sound system which is provided by our sponsor, b-Calm Sound. And b-Calm Sound has actually developed a very wonderful…It’s just wonderful. Everyone I’ve talked to that’s tried their Sedation sound system just absolutely loves it.

It has been developed as they worked with parents and teachers and adults on the spectrum, and who also have ADD and ADHD to develop this interevention system. And it’s just been something that’s worked really well for many, many people, and I know that our winners from last month have just spoken about the sound system that they got, they just really really like it. So I just wanted to remind everyone that if you are registered and you’re in our chatroom, your name automatically gets put in for the drawing. And I wanna give their website, too. It’s b-calmsound.com. So just hop on over there and see what they have to offer.

And now to get on with our show. I just want to let everyone know that on AWA Radio, we’ve had some pretty heavy hitters on. We’ve had Dr. Tony Attwood on a couple of times, we’ve had John Elder Robison on a couple times. But we have received so much feedback on our guest tonight, Melissa Barton. Her son Alex was voted out of his kindergarten class last year in 2008 and it’s really made the headlines. They’ve been all over the news stations and CNN and FOX and it’s just been all over. And there’s some really big things happening because of this case, and what happened with Alex, because he was soon after diagnosed with Asperger Syndrome.

So I’m gonna bring Melissa on now and let her tell about this, because we’ve had a lot of people who are interested, and I know that our switchboard, it looks like a lot of people are listening on our switchboard, too, this evening. So I want her to be able to tell this story. Are you with us, Melissa?

Melissa Barton: I sure am. How are you?

Sharon daVanport: I’m well, thank you. Thank you for being with us tonight.

Melissa Barton: Absolutely.

Sharon daVanport: Yes. I wanted you to take us back. This happened May 21 of ‘08, is that correct?

Melissa Barton: That’s right.

Sharon daVanport: Okay. And Alex was 5?

Melissa Barton: Yeah, he was 5. Alex has an August birthday.

Sharon daVanport: Okay.

Melissa Barton: So in May of ‘08, he was 5. He’s 7 now. A lot of people get confused: “What happened to that extra year?” But really his birthday’s in the middle of the summer, so that’s what happened with it.

May 21, 2008 started out a normal day just like any other day—dropping my 2 children off at the same school. My oldest child attended the Morningside gifted program at the time, and Alex was in kindergarten in Wendy Portillo’s classroom. And nothing unusual. No behavior problems in the morning, just a typical day. Dropped off the boys, went to work, no phone calls, nothing. No indication that anything had been taking place at school. I didn’t need to pick him up from school because of behavior issues. Nothing. Nothing out of the ordinary.

And then at 3:00 I did happen to take off work early that day and went into the school’s cafeteria to pick up both my boys, and Alex arrived first. He came to me and I could immediately tell by his demeanor, watching him walk down the hallway that something was wrong. And whenever he got close enough to me, I could see his face was really red and he had looked like he’d been crying.

Sharon daVanport: Aw.

Melissa Barton: And so I told Alex: “Hey, what’s going on?” and he said: “14 kids voed me out of my class.”

Sharon daVanport: Oh, he even knew the number then. He said 14. Wow.

Melissa Barton: He knew the number because Wendy Portillo knew he needed a visual for learning, so she decided to tally the votes on the board for him.

Sharon daVanport: Oh, wow.

Melissa Barton: She knew he needed a visual because I’d provided a packet from CARD, the Center for Autism and Related Disabilities from FAU, which is an organization that helps out in classrooms. I provided her with a teaching packet the month before, so she knew a visual would work best for him. And that’s the one thing he did recall immediately, was the 14 to 2 vote.

And as a mom or anybody, you hear that and you think: “Okay. It’s the end of the school year, there’s not a class presidency thing going on. Now what is he talking about?”

Sharon daVanport: Right.

Melissa Barton: So I held hands and I walked up to the office, and in the office were a few of the administration staff members and a nurse. And I knew the nurse and I asked her: “What is he referring to, this vote?” And her demeanor just absolutely changed now that she’s seen me, and she got real nervous and she pointed to the classroom across the hallway and she said: “You need to talk to the teacher about this.” So I became scared myself when she said that.

Sharon daVanport: So they obviously knew at that point, in the office. They already knew what was going on then.

Melissa Barton: They knew.

Sharon daVanport: Oh, wow. Okay.

Melissa Barton: So I went out to the hallway, and Wendy Portillo was sticking to another student. And so I waited for her to get done and I addressed her, and she quickly took me into her classroom, and now this is getting kind of scary. You can tell if one’s demeanor is different than it typically is, and so I sat down at this little kindergarten chair and a big circle table, because they didn’t have desks. They had big tables. And she sat on one side, and I sat with Alex on the other and I asked her to explain to me what happened. And she did. She went into detail. And she was very [verseful?] about it.

Sharon daVanport: So, tell us: how did she explain this to you? What did she say? What were the words that you heard, Melissa? [exasperated laughter] I wanna hear this.

Melissa Barton: Let’s start with, this was her way of “fixing” Alex. And when I addressed the fact that, no, we were in the process of developing an IEP for services, we had a Student Assessment Team, and we all knew that he very likely had autism and more specifically Asperger Syndrome. This was real well-known and I addressed this with her, and she said to me that this was her form of psychology, and this was how she was going to magically heal my child.

Sharon daVanport: Okay, now say that again: it’s her form of psychology. This is how she was gonna “heal” him or “fix” him.

Melissa Barton: Right. This was her way of “fixing” him. Exactly.

Sharon daVanport: Okay. Got it.

Melissa Barton: I’m sitting here, I’m thinking: “Are you crazy?” [laughter]

Sharon daVanport: Yeah.

Melissa Barton: That’s all you can think, and I asked her a few more questions, and she went into detail. And I turned to Alex and I said to him: “How did this make you feel?” And he leaned over to me and he said: “It made me feel sad, Mom,” in a real soft little voice, but enough she could hear it. And she slammed her hand down on the table which made it into a fist, and she brought it up pointing at him and she said to him: “No, it didn’t!”

And I got really upset, and I wanted to make sure that I left before I did anything wrong. And I took his hand, and I stood up, and started walking toward the door. At that time, she got up and she blocked my exit from the classroom.

Sharon daVanport: She blocked you from leaving. Wow.

Melissa Barton: Yeah, exactly. We couldn’t leave. But I’m a small person and she’s a much bigger person than I am, and so I was physically intimidated at that point in time, and I really didn’t know how I was gonna get myself and my son out of the situation. So I listened to her ramble on a little bit more and talk about all these issues that she was having, although we were working with the Student Assessment Team and even the principal was involved in trying to get something developed.

Sharon daVanport: Right.

Melissa Barton: And she…I don’t know. I couldn’t believe what was going on. I think I was in complete and total shock. I finally said real stern to her that we were leaving. And she did get out of my way after some coaxing. And I was walking toward the door and she made it out just after me. I guess it was just behind me, because as I went into the office across the hallway, I could feel her on my back.

And I walked into othe office and I asked for the principal, and she [Portillo] said to me that she wasn’t here, and she got real belligerent. I was in tears at this point, trying to hide it from Alex. I didn’t want to upset him any more than he was already upset. I just took him and I went out the other side of the office and waited for my oldest child. When I got into my car, I was already on the phone dialing 411 trying to get the number for the superintendent’s office.

Sharon daVanport: Right.

Melissa Barton: You just start dialing as many numbers as you can to get some help with what was going on. I wasn’t really getting anywhere. I was kind of stuck leaving messages.

Sharon daVanport: Now, Melissa, when you say that she explained to you everything, did she at that point tell you how she facilitated this vote? Alex had been sent to the office a couple times before, so was it while he was out of the room? And then she announced it to him when he came back? How did that part take place?

Melissa Barton: Oh, no no. He was in the room.

Sharon daVanport: Oh.

Melissa Barton: What I understand from documents and testimony at this point is: That day, there was a play. So he had a disruption in his morning and got a little bit off task. I’m not real clear if he got to join the play or didn’t get to join the play. My understanding from some testimony [is] that he did. He was watching the play—I think it was the fifth grade play—and after that, he was under the table kicking the leg of the table. Now, these are big tables, and I’ve heard comments, people saying that he threw the table. He’s not He-Man.

He’s kicking the table, and he was chewing on the crayons—Alex has pica—and so he was having a little bit of anxiety, and he was chewing on the crayons, and apparently this upset her.

Sharon daVanport: Okay.

Melissa Barton: She got him out from under the table. Alex has told me now that in the past, to get him out from under the table, she would actually dig her nails into his leg or his arm, and pull him out.

Sharon daVanport: [gasp] Ohhh.

Melissa Barton: I’m under the impression that the school police were called in to remove a 5-year-old from under the table. They came in and removed him from under the table. He was sent to the office.

Sharon daVanport: Oh my goodness. [This is?] ridiculous.

Melissa Barton: He was sent to the office. Alex I guess started off the day kind of sad, because Alex likes to wear his shoes on the opposite feet. It’s a sensory issue.

Sharon daVanport: Okay.

Melissa Barton: I guess he was sitting in class before all this craziness took place and he had his shoes on the wrong feet, and she really got on to him. He wasn’t making any noise; he wasn’t doing anything wrong. Just had his shoes on the wrong feet.

Sharon daVanport: Right.

Melissa Barton: And she made a big act of it, and made sure he changed that. So I think that probably sent him in the wrong direction.

Sharon daVanport: Well, yeah. See, just these little things that you’re describing, Melissa, about her response when Alex said to you: “It made me feel sad,” and then she tries to tell him how he did feel or did not feel. She says: “No, it didn’t.” And she said that it didn’t make him feel that way and shook her hand, didn’t you say?

Melissa Barton: Yeah.

Sharon daVanport: She’s trying to say how he feels, she’s not working with the sensory issues. It seems like one thing is just leading up to another. It almost doesn’t sound like she’s a teacher, like she’s even got her degree in teaching. This is just unreal.

Melissa Barton: I don’t really feel like she had her head on straight for at least that day. I was definitely concerned. But I was intimidated. I’m an adult and a parent. Sitting in that room with her, yelling and just…I don’t know. I can’t even explain the behavior. But I was intimidated.

Sharon daVanport: Oh my gosh.

Melissa Barton: So I can imagine what 5- and 6-year-old children feel. ‘Cause I felt nervous myself.

Sharon daVanport: Right.

Melissa Barton: But he was sent to the office, and the assistant principal, Patricia [Lastname], apparently tucked in his shirt and he promised that he wouldn’t misbehave any more that day.

Sharon daVanport: Wow.

Melissa Barton: And he said to her that he wanted to apologize to Mrs. Portillo for getting under the table.

Sharon daVanport: Aw.

Melissa Barton: So the vice principal said: “Okay. You go ahead and go apologize, and that’s the right thing to do.” And when he walked back into the room is when she decided she’d have her vote. He wanted to express that he was apologetic, and she didn’t even give him the opportunity to do so.

Sharon daVanport: Aw.

Melissa Barton: So she brought him up to the front of the class and she started asking the kids how they felt about Alex and things of that nature. Now, there’s already a negative environment going on. And it’s my understanding that at the same time that they were casting the votes, she would point to a child, for example, and say: “Do you want Alex to stay or go?” The child would say: “I want him to go,” and she’d say: “Now express what you don”t like about Alex.”

Sharon daVanport: [gasp] Oh!

Melissa Barton: “Tell Alex why you hate Alex” is what Alex told me, and I believe Alex more than anybody. So she would do this, and each child would say something negative, and Alex had one really good friend in the classroom—sweet little boy. And this little boy was so patient with Alex and was just a great kid. And I know that when it got to this child’s turn that Alex felt that he had an ally in the classroom. That somebody was gonna stand up for him.

Sharon daVanport: Right.

Melissa Barton: And this little boy tried to, in fact. He said that he wanted to keep Alex in the class—

Sharon daVanport: Aw.

Melissa Barton: —and she made the child change his vote. She yelled at him and made him actually change the vote that he had, because he became intimidated of her. And she also forced him to say something negative about Alex on top of everything else.

Sharon daVanport: So she’s reminding each student after they cast their vote that they at that point have to make a statement as to what they don’t like about Alex.

Melissa Barton: Right.

Sharon daVanport: That’s what you’re saying. Oh, my gosh!

Melissa Barton: [unknown] and the documented ones that are really just related to Asperger Syndrome are pica.

Sharon daVanport: [sigh] Oh.

Melissa Barton: And it wasn’t that Alex was mean, Alex is never mean to anybody.

Sharon daVanport: Right.

Melissa Barton: He’s always very, very sweet to people.

Sharon daVanport: Right.

Melissa Barton: He’s a verbal-nonverbal is what I call it, ’cause he’s not expressive with his language. He cam speak very well, has a great vocabulary, but when it comes to his emotions he doesn’t express them very well. And I understand that after the vote took place, he was asked how it made him feel by her, and he said he felt sad. And she yelled at him—I guess the time I was present was the second time she yelled at him that day and told him that he didn’t feel sad about it.

Sharon daVanport: [sigh] Oh.

Melissa Barton: And he doesn’t know how to express how he feels. So he was sent out of the office—and this was before lunchtime—and it’s my understanding that he didn’t even get to eat lunch the day that this happened; that he sat in the office, in the nurse’s office, and in front of the vice principal.

Sharon daVanport: [sarcastically] Well, that oughtta help his sensory issues a lot, now, wouldn’t it? Just have the child go hungry. No one even realized that he wasn’t taken down for lunch?

Melissa Barton: I don’t think they did.

Sharon daVanport: [sigh]

Melissa Barton: I don’t know why they did it, or why no one checked, but he says to me that he did not eat lunch that day and he has a pretty good memory.

Sharon daVanport: Ohhh.

Melissa Barton: My question has always been: Why didn’t somebody call me? These people in the office, I thought they were my allies and I would go on field trips and I would sit in the office and wait for them, the class events. I was very involved. I felt like these people knew me and were always so nice to me when I walked in the office and always a smile on their face.

Sharon daVanport: Right.

Melissa Barton: But that day, they were not there. They wanted to stay away from me.

Sharon daVanport: Now, Melissa, what time of day did the vote happen and he was sent to the office because he was voted out of class?

Melissa Barton: It’s my understanding about 10:00 or so.

Sharon daVanport: So he sat in the office all day until you came and got him at 3:00 because he was voted out?

Melissa Barton: All day long.

Sharon daVanport: So that means the administration in the office agreed with the teacher’s behavior if they allowed him to sit in there because he was voted out.

Melissa Barton: Nobody called me.

Sharon daVanport: Wow.

Melissa Barton: [unknown] is the vice principal left the building. She found out what happened, got in her car and left. How do you leave this person in a classroom? You know what she did, and you’re so nervous you leave?

Sharon daVanport: [sigh] Oh.

Melissa Barton: You leave her in the classroom with the other children? This is so disturbing to me.

Sharon daVanport: Did you ever get an explanation at all, Melissa, from the administration?

Melissa Barton: No. No.

Sharon daVanport: I know you said that Wendy Portillo has not made an apology or anything to you guys. But the administration hasn’t even said why they just allowed him to sit in the office all day without calling you? That he was voted out? [sigh]

Melissa Barton: Of course not. I’ve been in marketing for a very long time, in advertising for a very long time, and that day I contacted a mentor of mine who happens to own a marketing firm, and he said: “You get the superintendent on the phone.”

Sharon daVanport: [sigh]

Melissa Barton: I gave the superintendent three days to return my phone call before I went to the media. I was not getting answered.

Sharon daVanport: Oh, wow.

Melissa Barton: And so I knew that they would have to answer me if I had media involved. That’s why I turned to the media in the first place because I did not get answered. To this day, the only answers I have come from depositions, come from testimony, things of that nature. No one has ever called me up and said: “Hi, this is what’s going on.” I’ve never had that courtesy.

Sharon daVanport: Wow.

Melissa Barton: And I wouldn’t [expect it?] either.

Sharon daVanport: Right.

Melissa Barton: I really feel like people were hiding behind what happened. What we know comes from their own acts and admissions. All of the people who were involved have admitted to violations of the Constitutional and statutory common laws and the rights of Alex, his civil rights.

Sharon daVanport: Right.

Melissa Barton: This is something that’s been admitted and very well-documented. It’s just so dumbfounding.

Sharon daVanport: I know. It’s just so shocking. It’s almost like you can’t hardly believe. I remember when I first read the story. It was hard for me to even process the fact that this actually happened to a 5-year-old, and that it was an adult who facilitated this entire event.

Melissa Barton: Yeah.

Sharon daVanport: It’s not like it was some other kid that was bullying him and saying: “We don’t want you in our class,” and got all these kids to pick on him and say things about him. That’s bullying.

Melissa Barton: Yeah.

Sharon daVanport: It’s actually against the law in most states now. They have bullying policies, that you can’t instigate. One child can’t get another child to pick on another child, and this is exactly what Wendy Portillo was doing. She was going one by one in that classroom, having them tell Alex as he stood up in front of this class exactly what they didn’t like about him. Wow. That blows my mind, Melissa.

Melissa Barton: She’s marking it on the board.

Sharon daVanport: Marking it on the board. Unbelievable.

Melissa Barton: And there’s nothing wrong with this behavior?

Sharon daVanport: [sigh] I can’t even begin to say how many things are wrong with that behavior. And you know what? They know it, Melissa. They’re just scared to admit it because they know any admission, or if they don’t back her…this is what I want you to get to next. I want you to tell our listeners how outrageous the school district has been to you, even though she was told she couldn’t teach for a year and so many things happened. I’ll let you explain that, aboutg how they still refuse to…they’re still backing her. Why don’t you tell us what happened?

Melissa Barton: Before I do that, I’d also like to talk a little about the other stuff that went on, that [unknown] to parents all day long. They just don’t know it.

Sharon daVanport: Okay.

Melissa Barton: Alex entered a different school district before this took place, and we moved, and so we moved schools, unfortunately. Biggest mistake of my life. But we moved to what was an A plus school, and thia and that, the good schools.

Anyway, before moving to this district, we were in another district who decided that something was definitely going on with Alex, and asked me to sign to have him evaluated, to start the process of IEP.

Sharon daVanport: Right.

Melissa Barton: I did; I signed that October 3 of 2007. I received an IEP for Alex in the beginning of March 2009.

Sharon daVanport: Oh, wow.

Melissa Barton: You have to think about it. The school district by law has 60 days to put an IEP in place.

Sharon daVanport: Right.

Melissa Barton: There were so many IDEA law violations, just one after another.

Sharon daVanport: Oh my goodness.

Melissa Barton: I think many parents face that. I think that happens everyday. So if I have a piece of advice about that IDEA law, it’s: Learn it and understand it.

Sharon daVanport: Right.

Melissa Barton: When you have a child in a public school, you need to know what your child’s rights are. You need to be your child’s advocate, because I really did not know my rights. I was not given my rights by the school like I was supposed to be, so I didn’t know them. And I was in the dark, really. I kept calling and trying to get things to go a lot faster, and I wasn’t getting anywhere. And this is all pre-vote.

Sharon daVanport: See, a lot of parents don’t know that there is a law that says that they are required to have the IEP in place after X amount of days. If you don’t know that, then you don’t know to enforce that, and they won’t offer that information to you. They won’t say that when you submit a request for an IEP, they won’t say: “We’ll make sure that we have this done in X amount of days. It’s against the law if we don’t.” [laughter] They’re not going to say that. Wow.

Melissa Barton: Yes, absolutely. I just wanna make sure that the people are aware that violations take place every single day.

Sharon daVanport: Right.

Melissa Barton: It’s probably happening to you if you’re a child in a public school district somewhere. If you don’t know the law, I can almost guarantee you it’s been happening to you.

Sharon daVanport: Right.

Melissa Barton: So make sure that you’re well-informed, and that you know what’s going on in your child’s classroom. Moving beyond the vote, after the vote took place and I contacted the media and it was so exposed. It wasn’t just exposed on a national level, it was on an international level. We received letters and cards from New Zealand, from Japan, from all kinds of places. It was very much exposed, this case was.

Sharon daVanport: Wow.

Melissa Barton: And the school district did not like that, because on a daily basis they were receiving hundreds of phone calls, e-mails, countless faxes, things of that nature saying: “What is going on in your school district?”

Sharon daVanport: Uh-huh.

Melissa Barton: And: “Fire this teacher.” There were petitions out there with over 10,000 signatures on them, the ones I can find that are totalling. They’re complaining. The public stood up for my son and said: “This is the wrong thing. This is not what our country is about. We cannot allow this to take place.

Sharon daVanport: Right.

Melissa Barton: The school district looked as if they were going to do something. May went with the vote, June went and July went by, all these dates and not a whole lot of action. And then came August, when I sent my oldest child back to school, back to Morningside. He’s in the gifted program, so I had no other choice. I’ve had to send him to Morningside elementary school.

Sharon daVanport: And now this is where it happened to Alex is Morningside, correct?

Melissa Barton: It’s where the vote took place, and I was incredibly uncomfortable sending him there. Almost immediately, the school and staff at the school started to retaliate against our family.

Sharon daVanport: In what way?

Melissa Barton: Oh, my gosh. The first time in his educational career, he was making Cs and my legal team had to address the issue. Then all the sudden, his grades went up 10 points in 2 or 3 days.

Sharon daVanport: Oh wow.

Melissa Barton: My son was apparently truant, although he only missed a handful of days with letters. I had a truancy officer, which is really serious in our state, call my home. They were gonna put me through a truancy process, which I did not deserve, [shocked laughter] because my son attended school the days he was supposed to.

I witnessed the vice principal physically push my oldest child who was in 4th grade at the time. I just happened to be in a car riding along, and it was a whole situation that took place and I did file a [police?] report on. Nothing, of course, happened to her because of that. Then again he said that she pushed [him] while she was in the school, physically. Apparently, nobody wants to help out. [shocked laughter]

Sharon daVanport: Wow.

Melissa Barton: I file my police report again with the police officers who are the school resource officers, not police officers for the city, but for the school.

Sharon daVanport: Right.

Melissa Barton: So here I am filing a document against themselves, and it doesn’t do you any justice [unknown].

Sharon daVanport: Aw.

Melissa Barton: I tried everything I could to make something happen and nobody would do anything about the physical abuse that was taking place. And then an article came out before Wendy Portillo’s appeal. That night that the article came out, I received 6 phone calls from the school to my cell phone that had the school phone number come up that were just like breathing and hanging up. It was just so bizarre. I had to turn off my phone, which was also my work phone at the time.

Sharon daVanport: This is adults doing this!

Melissa Barton: This is adults doing this.

Sharon daVanport: You’d think that you were dealing with 10-year-olds.

Melissa Barton: Yeah. Hormonal teenagers, at least. And then it gets to the point to where I was 6 months pregnant—I just had a baby 6 weeks ago—and I was attending the honor roll service for my oldest child. As required in our home, he made the honor role every quarter. I had a parent and a self-proclaimed friend of Wendy Portillo come to me and threaten me with violence. Here I am pregnant, and this woman is threatening me that she’s going to physically attack me in the parking lot.

So that was another situation. By the way, the police officer said I did not appear to be pregnant once he took the police report from that incident. But I was. About 2 weeks later, I was going to pick Kyle up from school—I had Alex with me—and as soon as I pull up, I got this weird feeling. I see this woman, and as I drove closer I realize it’s the woman who threatened me holding a big sign. And they were picketing us. I’m driving up to the school, and on the school property—

Sharon daVanport: You’re child’s a student there and they’re picketing you.

Melissa Barton: The PTA members of the school are actually picketing me. Not only during school hours but on school property. I whipped out my cell phone, ’cause that’s all I had with me at the time, and I started snapping photographs of this picket. They’re saying things like: “Peace at Morningside,” but then [how?] really hostile they are toward us.

So I drive up and I get my oldest child, and as I’m driving up to the car rider line, there’s a sidewalk where the kids wait. The picketers are on this sidewalk, and they are taunting Alex and myself as we drive through. These are people that I had never even seen before, some adults that I don’t think belonged at the school at all.

Sharon daVanport: Right.

Melissa Barton: They’re making faces and things of that nature. Alex got really nervous and upset and he hid in the floorboards and my oldest child gets in the car, and he had been crying. He was real upset.

Sharon daVanport: Aw.

Melissa Barton: He said: “Mom, they’re saying these horrible things,” and I said: “It’s okay. Don’t cry about it.”

Sharon daVanport: Were they chanting things when he was walking out of the school?

Melissa Barton: Yes. He had to stand behind these picketers for however long he had to stand there—maybe 10 minutes.

Sharon daVanport: How unprofessional. The principal had no control over his teachers. That principal could’ve stopped that and not allowed that to happen.

Melissa Barton: He had teachers standing right next to him as this is taking place and they’re doing nothing. They see him clearly upset and they’re doing nothing. The ESE coordinator at the school is a huge supporter of Wendy Portillo. Huge supporter of her. She is standing within feet of my son allowing this to take place.

Sharon daVanport: Oh, wow.

Melissa Barton: My son gets in the car totally upset and I’m trying to dial the superintendent’s office, I’m dialing the media control person with the school district, and everybody I could think of. I’m not really sure what took place after I left. I can only go by what they say. They claim they made everybody leave, but the damage is done. Both of my children were very intimidated by this moment. We were picketed. For what?

Sharon daVanport: Melissa, I have a question from the chatroom. Trisha’s wanting to know what did the signs say and what were the picketers saying?

Melissa Barton: The signs were saying different things, most of which were like: “Peace at Morningside” and “We support our teachers” and things like that. If there had been no events and they weren’t making negative remarks toward my oldest child who was standing there and making their little notions of us as we were driving up, it would seem like a real positive thing to do for your school, but it wasn’t.

Sharon daVanport: Right. It seems to me that they could’ve watched their own back, and when they saw a teacher doing wrong, stood up for a child. At this point, it seems to me like more heads need to roll than Wendy Portillo’s. All these people who are backing her, things that she did that were against the law. It just seems so outrageous that these other teachers and the administration especially, they need to be held responsible for allowing all of these events afterwards to take place. That you guys were harassed and bullied for you protecting your child. For you standing up for your child and saying: “No, this won’t happen.” Then they turn up the heat. Instead of backing off and trying to work things out and apologizing, they continue to harass you guys. Unbelievable.

Melissa Barton: Right. Unfortunately it gets much worse than that.

Sharon daVanport: I can’t believe it gets worse than that!

Melissa Barton: During this entire time, I was fighting for an IEP for my son, throughout this entire period of last year. And the first IEP they put in my face to have me sign was ridiculous. I said: “You know what? This is not the services that he requires in the classroom, and I’m not signing it. Point blank, I will not sign it.”

Several IEP meetings that lasted 6 hours long with my attorney and Alex’s doctors on my dime, we did eventually come to an agreement on what an IEP would loook like for my son.

Now, he was to enter back into the classroom I believe the beginning of March. That date in March came and went. I went to the district about what school he’d go to and I met with a bunch of different principals, and there was one principal in particular who I really liked. He was a very good principal and you could see it.

I talked to him a little bit. He knew the situation, and one of the first things he said to me was: “I would never allow Wendy Portillo in my school.” Here’ he is, he’s working for the same district and I have this head of ESE [sitting?] in the same meeting. And all the rest of the principals were really afraid to say anything to me. This guy was point blank honest.

Sharon daVanport: Good for him.

Melissa Barton: What a great principal, right? When you [talk about?] some of the programs he created for children on the spectrum and in particular, Asperger’s children [unknown], they ran a fire drill, they did all kinds of things in his school. He was telling about some of the other things in his class that he developed for childtren on the spectrum. He had a volleyball team that he created for them, and he really loved the kids.

Sharon daVanport: Right.

Melissa Barton: He wanted Alex in his school, and I wanted Alex to attend that school. So when that date came, that was in the IEP that said that he was going to attend this particular school. I had him all ready to go, and we went walking up to school.

Now, I kept asking the head of ESE: “What’s going on? Why is nobody returning my calls? Why can’t I drop my child off at school? He’s supposed to begin very slowly to get him transitioned back into school. What is going on?” And I was getting no answers, my attorneys were getting absolutely no answers.

I went into the school, physically myself with Alex to do a re-enrollment process, to get the paperwork. I was told very kindly, a very nice lady at the office said that I could not enroll Alex into the school, although it was in my zone, it was on my IEP, but I was not given a reason. I don’t think she knew the reason.

Sharon daVanport: But it was in his IEP. You guys had agreed upon this school, and then he was rejected. Wow.

Melissa Barton: Yes. I brought the IEP with me. She didn’t understand it, and I knew she wouldn’t, so I took Alex. I asked her before I left: “You see that screen right there that says he can’t attend? Can you please print that off and let me have it?” And sure she did. I brought it with me.

Sharon daVanport: Good for you. Keep that paper trail.

Melissa Barton: I still couldn’t figure out what the heck was going on. It turned out in depositions and if you read the actual [federal?] filing that we’ve recently filed, it will tell you. What we’ve learned throughout this process of discovery, getting documents and through depositions is that the union actually blocked Alex from returning to school.

Sharon daVanport: The teachers’ union?

Melissa Barton: The teacher’s union.

Sharon daVanport: Wow.

Melissa Barton: Now Ms. Portillo, to my knowledge, was not a union teacher. The teachers’ union apparently, and according to what we’ve discovered and to what depositions say, referred to Alex as an “unwanted child.”

Sharon daVanport: “Unwanted child.” [sarcastically] Great. Unbelievable.

Melissa Barton: “Unwanted.” And this is all due to him having Asperger’s Syndrome.

Sharon daVanport: Wow.

Melissa Barton: Teachers were threatening to call the media if my child was enrolled in the school. They said Alex and other “unwanted” children.

Sharon daVanport: Other “unwanted.” So they had a list of other children that they considered unwanted?

Melissa Barton: “Wanted” and “unwanted.”

Sharon daVanport: That were on the spectrum as well?

Melissa Barton: Exactly. That’s my understanding.

Sharon daVanport: Woah. And you did get document proof of this, right, did you not?

Melissa Barton: We have everything, yes. We have depositions that also…I could sit here and talk to you, but reading something in black and white that your child is unwanted in school due to his disability, or ability, I refer to it as. That due to this, due to him having this special ability, he cannot attend a classroom.

Sharon daVanport: This is unreal.

Melissa Barton: What this is is history repeating itself. That’s exactly what this is. As a parent, as a mother—and I’m a strong mom, don’t get me wrong—but as a mother you see this, and you don’t know if you should scream and cry or if you should hurt somebody.

Sharon daVanport: Right.

Melissa Barton: You don’t know which way to go. So he was not allowed to go back into the school.

Sharon daVanport: Aw.

Melissa Barton: He never ever attended the public school system again, and he was completely blocked out of attending the school. The vote is horrendous. It’s unbelievable and it’s completely disgusting.

Sharon daVanport: It really is.

Melissa Barton: But the events afterward, the retaliation, is just shocking.

Sharon daVanport: Right.

Melissa Barton: I anticipated some form of respect for the situation we were going through, and we received the complete opposite of that.

Sharon daVanport: You know how much I’m sorry, and in repremanding that teacher, we wouldn’t be having this conversation right now.

Melissa Barton: Had I received a phone call. Something. But nothing. In November of ‘08, the school board had a vote on Wendy Portillo—everything revolves around votes in this county. I don’t understand why—but Wendy Portillo, regarding her punishment. The first time they did this, they decided that she was gonna lose her teaching job for a year. She was also going to lose her tenure. Tenure is really important.

Sharon daVanport: Right.

Melissa Barton: A lot of great teachers deserve the tenure they have, ’cause they did good work for so long, and they put in some good years into the district. This is who it’s for.

Sharon daVanport: Now, the school board voted on this?

Melissa Barton: The school board voted on this. It was recommended by the superintendent that she lose the tenure and lose a year of working. And they voted unanimously for her to lose her tenure and not go back to school for a year. That was November 18 of last year.

Now, she appealed this decision. All these documents are online at the [DOAH]](http://www.doah.state.fl.us/internet/ “State of Florida Division of Administrative Hearings”) website. ([Ms. Portillo's docket sheet] (http://tinyurl.com/ybooeyp” “St. Lucie County School Board vs. Wendy Portillo”), with documents as PDF files). She appealed it before a judge, and the judge agreed with the school district. In fact, I was there when he said that she should really be fired, but [unknown] can’t make that decision.

Sharon daVanport: Wow.

Melissa Barton: All these videos are online. (Warning: videos not captioned). It was recorded by the media as well, so it’s all very accessible. So she lost this appeal. I felt like there’s a little bit of vindication.

Sharon daVanport: Well, yeah.

Melissa Barton: Then in May of ‘09 I received a phone call from a reporter that I frequently talk to and he said to me: “How do you feel abut the [unknown] taking place tonight?” “What are you talking about?” Apparently, there was a meeting, and I refer to it as a secret meeting, because I was not told this by the school district, nor invited to this meeting, on a reversal of her punishment, for lack of a better word.

Sharon daVanport: Right.

Melissa Barton: The school board had informed her apparently 12 other people, 2 of which are her own children, that they had the opportunity to speak on her behalf on why she should receive herf tenure back. They did. 12 people stood up and told the school district that she was a spectacular person and how great of a person she was. They said: “Okay, well then, you get your tenure back.”

Sharon daVanport: [sadly] Oh.

Melissa Barton: She has her tenure, and she will be returning to the classroom the 18th of next month.

Sharon daVanport: Oh my goodness. Now this gets to the part that I just cringe. I cannot believe…I’m all about reform, and had Wendy Portillo stood up, took responsibility for what she did, agreed to take some continuing education classes on students with disabilities, some sensitivity training. Had they really implemented the right kinds of consequences and she followed through with it and was very humble about it, I’m all about giving someone something back. Her job. If she earned it back.

Melissa Barton: Mm-hm. [Yes]

Sharon daVanport: But for someone to be handed something back when they don’t even apologize for what they’ve done, and in fact they have done nothing but continue to harass and bully you guys? This is unbelievable to me!

Melissa Barton: We had to move to an unknown location and provide a PO Box. We have had to actually leave the district. I remember when all of this started. I had parents contacting me saying: “You will be retaliated against.” I kinda thought: “Yeah, they’ll give me some dirty looks,” right? No.

Sharon daVanport: Right.

Melissa Barton: If you stand up for your child, and in this district in particular, I am a perfect example. You will be retaliated against. Mark my words. That’s why parents don’t stick up for their kids as often as they should, because they’re so afraid. The few who have have had to pack up everything they have, leave their home, leave their job, leave everything they have and just move.

Sharon daVanport: I want you to tell our listeners though, Melissa….This is how much the district intimidates other people. You have had support from other teachers and people who have actually helped you along the way with support and things, however they do it in secret, don’t they? They will not do it openly, because they’re scared.

Melissa Barton: Right. They’re terrified. I’ve had several of the teachers actually contact me and I know their names, but that’s not something I’m willing to share with anybody. They have let me know that they have gone through certain situations or they’ve seen certain situations take place, just to make me aware.

A lot of this stuff I can’t do anything about. I really can’t. There’s nothing I can do about past cases. Statute of limitations is, like, 2 years and if a parent doesn’t immediately get on something and file a complaint, it doesn’t matter. It didn’t happen. But there are other things I have reported to other agencies and hopefully somthing will take place.

And this comes from teachers. There are good teachers out there. There are good teachers hiding in [unknown] county. The trouble is, they’re so scared to really step up to the plate and do something. They’re afraid that they’re gonna lose their job or they’re gonna be marked with a number.

Sharon daVanport: Melissa, something I don’t understand, and maybe you can explain this to me. If Wendy Portillo went to a judge and filed an appeal to try to get this judge to reverse the school board’s original decision, and the judge upheld it, why is his decision still not able to supercede them having a secret meeting? Because she appealed above them to a court. Why is that not able to happen? I don’t get that.

Melissa Barton: Because it’s a DOAH court. They do not have the power over the school district. The school board basically has final say.

Sharon daVanport: Okay. Well they do, but that’s why you filed a federal suit.

Melissa Barton: Yeah. Hopefully we have some response from the government. I’m hoping that eventually laws will be changed and policy to be in order that will make sure these sort of actions never happen again, and if it does happen again, my hope is that the teacher will immediately be fired.

Sharon daVanport: Do you have any names where we can tell our listeners to write to anyone at the US Justice Department. Do you have anyone at all that you can give as a contact person that we can keep this out there in the public and say: “We’re supporting the lawsuit that you have filed.” If I just wanted to send an e-mail and say: “I support this lawsuit” and make my opinion be known, who do I contact?

Melissa Barton: You would contact the Office of Civil Rights, and the US Department of Justice. Send them an e-mail and let them know how you feel about a certain situation, and any situations that you can place in your own home or your own school. The Office of Civil Rights you can file a complaint with.

Sharon daVanport: I’m asking our listners right now. I”ll post it on Facebook, I’ll post it on Twitter. I’m gonna find this address where we need to write to and send an e-mail to. All of us need to keep this out there, especially now. Didn’t you just recently file the federal suit? You have to legally wait a year, is that true? You guys just now filed it?

Melissa Barton: Right. You have to wait a year, and so we did just now file it in August. Actually during the press conference, if you happen across any of the video, I was in labor.

Sharon daVanport: Oh, wow!

Melissa Barton: And I was asked by one of the members of the media: “Why are you here? You’re in labor.” I was there for a reason. If I don’t show up to protect my children’s life, who will?

Sharon daVanport: Right.

Melissa Barton: And my baby who was unborn at that time, I was protecting her rights as well as my child’s rights, because little by little, we seem to lose our rights.We seem to give them away so easily. It’s just wrong. [Unknown] survivors and this country was built on people who wanted to make a beautiful nation, which we do have. If we just let that go, and little by little—

Sharon daVanport: Now, Wendy Portillo’s going back to Morningside elementary school?

Melissa Barton: I don’t know that.

Sharon daVanport: You don’t know that?

Melissa Barton: Nobody I know can find that information out. Reporters are trying to find out.

Sharon daVanport: Oh, they’ll find out. And then we’ll all find out, and we’ll just have to keep on everything. It’s gonna take our entire community, and I would hope that parents…This isn’t just an autism crisis here. This isn’t just something that happened to the autism community. This is something that parents in general need to realize: how much power these schoolboards have. And how much that they can say or can be done or not done that’s going to affect all of our children’s education. And then when you take the more vulnerable children, I mean, children are vulnerable anyway and then you add a disability or you add something on top of that, this is just outrageous. It just makes me sick to know that this has happened to you guys, Melissa. I’m just so sorry. Can you share with us what the lawsuit is requesting? Is it saying that you expect certain things to be done and laws to be changed? How is the federal lawsuit worded? Tell us how it is. The basic thing.

Melissa Barton: There’s nothing in particular that I can really discuss as far as [the specifics?] of this lawsuit, but I can tell you that a federal lawsuit works completely different than a [unknown] common lawsuit. And I’m not an attorney by no means, believe me. When I’m asked legal questions, I always just say: “Address it with my attorney,” because I really don’t understand a lot of terminology when it comes to filing lawsuits. I just know that the only way to really change things is to follow through with what you do, and I believe in that.

Sharon daVanport: Right.

Melissa Barton: In my heart of hearts, I know that we’re doing the right thing.

Sharon daVanport: You really are, Melissa. I’m gonna bring a caller on. Oh, I’m sorry. Go ahead.

Melissa Barton: This is not about money, and I wanna make that really clear. This is about preventing this from ever happening to another child for as long as the St. Lucie County school district exists.

Sharon daVanport: Oh, I believe it. I believe you.

Melissa Barton: With what we’ve been through, it’s been horrible, and I wanna make sure that it never, ever takes place again.

Sharon daVanport: Well, it shouldn’t. It should’ve never happened. How is Alex doing? Before I bring the caller on, I wanna ask: How is he doing now? Does he talk about it still?

Melissa Barton: We have a huge team of professionals that just works with Alex, and it’s amazing the difference a good teacher can make.

Sharon daVanport: Good. I saw you guys on FOX just a few days ago, actually. I like the way when the newscaster asked him: “Was it the classmates that made him feel bad, or that did this?” and he was like: “No. It was the teacher.” [laugher] You know, I love that. I thought: “There it goes.” He knew that it was the teacher.

Melissa Barton: He knew it was her. And Alex is very smart as well. Alex has a gifted IQ. For some reason, in the county of St. Lucie I couldn’t get gifted included on his IEP, but Alex is very, very intelligent and understands things on a very deep level.

Sharon daVanport: [sadly] Aw.

Melissa Barton: And we have tried to work so hard…we have put so much into helping him understand that these kids were put in just as bad a situation as he was.

Sharon daVanport: Right.

Melissa Barton: I know it affects him, and it will continue to affect him for the rest of his life. His doctors feel strongly about that. But how do you tell a child that, yes, these kids sat there and said something horrible about you, but they were forced to do it. None of the other children were at fault. They were all good kids, and they were not at fault for anything that she did.

Sharon daVanport: What did these parents think? If I was a parent of a child in that classroom, I would’ve been outraged. I would’ve been so mad that my child had to vote another child out.

Melissa Barton: There were a few that were very vocal, and unfortunately, whenever it’s not your child, it seems to not matter until it is.

Sharon daVanport: [sadly] Aw.

Melissa Barton: I’ve experienced that myself, so I’m not one to judge. But I can just explain to you that that seems to be the situation a lot of times.

Sharon daVanport: Right.

Melissa Barton: And there were some that were very vocal and very upset about it, but time goes on and you have a job, you have other things to do. You can’t focus on what happened to somebody else’s child. And I understand that.

Sharon daVanport: Right.

Melissa Barton: I put no blame on those parents. I place absolutely no blame on those wonderful little kids that were in that class.

Sharon daVanport: Well maybe, if we just keep the story out there, we can just continue putting our words in and our support towards all of this, because something has got to change. It really does. I wanna bring a caller on, though. I’ve got a couple callers waiting.

Savannah: This is Savannah

Sharon daVanport: Hi, Savannah. How are you?

Savannah: I’m okay. I wanted to know if the statewide family network for her state has helped her at all.

Melissa Barton: The statewide family network? No, I’m not familiar with anybody in the statewide family network. Are you referring to a child protective services?

Savannah: No. Statewide family network gets SAMSHA grants to provide a list of resources and advocacy groups by state. I’m kinda suprised that Florida’s didn’t help you at all. That resource is out there, and it’s supposed to help parents that have gotten into situations like this.

Melissa Barton: No, I’m not familiar with them at all.

Sharon daVanport: What kind of resources and services to they provide, Savannah? You’re in Pennsylvania, so you’re affiliated with them through Pennsylvania, correct?

Savannah: Yeah. Yes I am. My mother and I are both on the board for Pennsylvania’s statewide family network. Mostly what it does is it helps find resources that might be hard to find. For example, our state has a database that we’re putting together of all the people that provide services, government and not, any advocates that might be out there that wanna have their listing up, [providers?] that specialize in issues that might come up for families that have children with special needs. All of that stuff.

Sharon daVanport: That might be a good thing for you to tap into, Melissa, because maybe they have some advocacy services out there to help you guys through this whole legal process, just as a support.

Melissa Barton: I definitely [unknown]. I have some local advocates. I have family advocacy resources, Randy Sullivan who has been amazing throughout this whole thing, and ADA and a few others who have really helped me out as much as they possibly can. I’ve been quite fortunate with that.

My attorney [unknown] who’s out of West Palm Beach Florida is an amazing attorney. He’s just so compassionate and really, really cares about the kids, and truly believes that he can prevent this from ever happening again. He’s an excellent advocate for Alex as well. So I am lucky in a lot of ways, but I’m always open to new sources of advocacy and any way I can help as well. So that’s excellent. I’ll definitely check them out. Thank you.

Sharon daVanport: Yes, thank you, Savannah. I want to look into that, too, and maybe we can start posting that link. Is that the link your were talking about in the e-mail earlier today, too? The one you were talking about getting posted on the Pennsylvania website for AWA?

Savannah: I’m not sure. I’ll look stuff up. [unknown] I’ll let y’all go, you guys.

Sharon daVanport: All right. Well, thanks for calling in, Savannah.

Savannah: Yep.

Sharon daVanport: Okay. Talk to you later.

Savannah: Okay, bye.

Sharon daVanport: That’s good to know. It’s just little things like that, like you were saying earlier, Melissa, that you just don’t always get offered, these resources. You just don’t always know that they’re there. If you don’t know, then you don’t know to ask for it.

Melissa Barton: And we were so new into learning about Asperger’s Syndrome. We were so new into it, and we had only known about Alex having Asperger’s since about January-Februrary when the principal called me and told me to check into it. She believed Alex had it.

Sharon daVanport: So the school first identified it, and they’re the ones who ended up treating him this way. Unbelievable. Unbelievable.

Melissa Barton: Yes. She pointed out Asperger Syndrome in particular and told me to do the research over the weekend. I did. And it was the first time I had heard the word. You hear “autism” and you wanna just fall apart. You really do. I didn’t have a moment of grief. I was [focused on?] doing all this research until all the sudden, holy cow! My son has been put into this horrible situation. And that’s what I’ve been focusing on.

Sharon daVanport: Sure.

Melissa Barton: I wasn’t [aware?] of any of the groups, or any of their political backings, or any Who’s Whos after the event. One group in particular was horrendous and the absolute opposite of helpful.

Sharon daVanport: Maybe we should know who. Can you say?

Melissa Barton: You know, I”d rather not. They already have a horrible reputation.

Sharon daVanport: Okay.

Melissa Barton: I always let people show me their true colors. I don’t judge. I’d rather see it for myself. I’d rather have people do the same. But at a particular even that was set up just because of my son, I was not permitted to speak or say anything. But the lead sponsor whom I knew from my business career stood up and actually said something about him. And it was “too political a situation” for this particular empathy, and it did get a little [unknown] I was quite shocked, actually.

Sharon daVanport: Well, that’s what it’s come down to, hasn’t it, Melissa? They’ve totally lost sight about what this is really about. This was about a child, an innocent 5-year-old child, and something that an adult did that was inappropriate. They totally lost sight of that, and they turned it into something that it shouldn’t even have been. That’s the whole disgrace in all of this.

Melissa Barton: Exactly. And if there’s ever been an example of someone going from villain to victim, this is it. This is the case. I watched Wendy Portillo on the news, and the clips out there on the Internet. I watched her after she got her tenure back. The reporter said: “How have you made it through this whole thing?” And she referenced God. And I thought, I don’t know where maybe she stands religiously, but, for me, that’s the wrong time to do something like that. Because she is not a victim here.

Sharon daVanport: Right.

Melissa Barton: She is not a victim. She’s a villain. If you didn’t know Wendy Portillo, if she never did this to my son, you would never hear my name or see my face. I can guarantee you that, ’cause what I do is not a glamorous job. Defending your child and having people claim that they are related to you or they know you and write letters to your editor and things like that, it becaomes an [interrupting?] situation and it’s no fun, believe me.

Sharon daVanport: Right. Right. Well, I commend you for all of this. I wanna go to the switchboard, ’cause we have several calls in queue here. You still have time to take a couple more calls?

Melissa Barton: Oh, absolutely. Sure.

Dr. Fuentes:Hello?

Sharon daVanport: Hi.

Dr. Fuentes: Hello, this is Dr. Fuentes.

Sharon daVanport: Hi, Dr. Fuentes. How are you?

Dr. Fuentes: Oh, just fine. Basically I wanted to say congratulations to Melissa following through pursuit with that situation. Because it almost makes me cry, but I want to get this out to you, is that I’m a computer teacher. And I’ve been in situations, especially ones where I had to judge upon myself of how I wanted to deal with something. But I was in a situation once, and it was in a Catholic school, and I was teaching kids how to read even further and bring up their skills, kinda helping out the language teacher.

I guess I was a threat, because I was overextending myself, as you say. But I had already asked this teacher could I help her out, because I could see that when they were in my computer class, they were reading kinda slow. And I thought maybe I could help out. She said: “Fine.” So I got the okay, and even from the principal. Now, I’m just telling you what it’s like to be a teacher in shoes of going into a school where there’s a clique. There’s teachers that’s part of a clique, and I’m on the outside of it.

Sharon daVanport: Right.

Melissa Barton: Um-hm. [Yes]

Dr. Fuentes: So a lot of times we’re looking into, because we have children, ’cause I have children, but a lot of times you don’t see what it’s like to be a teacher in a system where there’s a clique. And I was in a situation—I’ll never forget this—and I’ll try to say this real quickly.

I was going to lunch. Let me tell you. This teacher was so upset with me, I was standing outside the teacher’s lounge. I was looking at the board or looking on the wall at some of the things that the students had done, and I thought was so cute. I was just having a nice breezy, breezy day. And I overheard conversations about the kids. These teachers were in there laughing, lolly-gagging, and insulting children. Calling them by their names, talking about some of them are “retarded,” some of them are just too slow. “I cannot do this.” I could not believe what I was hearing. And it hurt me so bad that I stood there and listened to the whole conversation, and then I heard them say something about me. And I stood there. And I couldn’t hold it in, ’cause it was too much.

So I opened up the door, real fast, walked in on the teacher, and addressed her. And said: “That was not right. What if I was a student out there?” I caught her off guard, and you know what I ended up doing? Quitting. After I told her off, I addressed it to the principal and said: “I’m leaving.”

Sharon daVanport: Right.

Melissa Barton: And they lost a good teacher.

Dr. Fuentes: And that’s what you’re supposed to do. I’m not saying everyone should quit, but you’re supposed to address that.

Sharon daVanport: Right. Well, you know, and that’s the sad thing in all of this is that you would think that other teachers would realize that they’re really on the wrong side here. This is really something that has affected a child. No matter how you may feel about the teacher, if you were really that teacher’s friend, and I wanna say this to Wendy Portillo: These teachers are thinking they’re looking out for something a little bit different. It’s all become political to them.

Dr. Fuentes: Right. It is political.

Sharon daVanport: Political allies to people aren’t their friends, so Wendy Portillo needs to just get off this act that these people are her friends. They thinkk they’re doing something to protect their job. It’s all become political to them. They think if they don’t back her, then what’s gonna happen to them? What’s gonna happen next time that a student does this? It’s all political. They’re not her friends. If she thinks for a second that these teachers had chosen the “right” side, no, it’s a selfih think that these teachers are doing, looking out for their other side.

Dr. Fuentes: It is.

Sharon daVanport: It’s wrong, too. It’s morally wrong. It’s just disgusting to me, it really is.

Dr. Fuentes: But I wanted to get that out, because I want you to understand that there are some situations where the teachers are very clique-ish. I’m not about that. I don’t get into groups like that. I see something I don’t like, I will address it. Then I make a decision if I want to be a part of it or get away from it.

Melissa Barton: Good for you. You sound like my kind of teacher.

[Laughter]

Sharon daVanport: And you know what, Melissa? Dr. Fuentes has a son that’s on the spectrum as well. How old is he now?

Dr. Fuentes: He’s 22 now.

Sharon daVanport: 22. Wow.

Dr. Fuentes: And I fought for him, so imagine the same attitude that I had when I was trying to teach, imagine what I did with my own child.

Melissa Barton: I know a teacher like that as well. I know a teacher who has walked in your shoes that is a person who is…I don’t give any names, but this person has been in your position and has said some of the same stuff that you’re saying tonight: that they do break out in factions and if you go against them, it could be horrible. And you could be intimidated, they could do horrible things to you, they could start turning parents against you. I understand what you’re saying, ’cause I’ve heard this before. I’m glad I’m not in that position, and good for you for standing up for yourself.

Dr. Fuentes: Well, thank you. I did leave the job, so [laughter] but what I did was I waited on another one, and then I was into another school. But it does take for you to take a strong stand. To stand up and just say: “Okay, I need the job, but is it really worth this?”

Sharon daVanport: I know, Dr. Fuentes. Isn’t Melissa awesome to just follow through with this and file this federal lawsuit, and to hold them accountable? Because she’s doing this for all the kids. This federal lawsuit, this has the potential of doing something great within our educational system.

Dr. Fuentes: Yes. Congrats to you. [Unknown] I wanted to get that out, and I wanted to thank you, okay? All right. Have a great day.

Sharon daVanport: That’s really nice when you hear things like that, isn’t it, Melissa?

Melissa Barton: It is. There are some excellent teachers out there. Alex’s teacher now, she’s incredible. And the teacher we had coming into our home—what a kindred spirit. She has actually taken Alex to her horse farm on the weekends and shown him the horse and little cows and things like that. There are some excellent people out there, and unfortunately, a very intimidating politicial system. And it’s a monster.

Sharon daVanport: Right. I’m gonna take one last call before we wrap things up. I believe it’s Yvonne, our executive director for the AWA. Hello, Yvonne?

Yvonne: Hello? Can you hear me?

Sharon daVanport: Hi.[laughter]

Yvonne: Hi, Melissa. Melissa, I am so proud of you. I want the AWA to keep up on this case because, as a parent myself—my daughter’s 27 now—I have gone through the school district, similar to what you did. There are great teachers out there, but they leave. They’re not paid enough to do the work that they do, when the other teachers are sitting in lounges talking about people instead of studying and improving themselves.

I have to say, as a person who taught in college, I will be very honest. My poorest students were usually elementary ed teachers. What they told one of my colleagues was: “It doesn’t matter what you teach us. We’re gonna do what our mothers tell us to do.”

Sharon daVanport: Mmm.

Melissa Barton: Oh, my gosh.

Yvonne: So they’re basically going from their upbringing, and it could be a very bad upbringing. They just dismiss anything that’s taught in the college. I have taught also special classes in the summer for them. We’ve had a challenge with one teacher, who…Well, a friend of mine has a PhD in education, and he was hired by a school district here to clean it out. It was so bad with nepotism and cliques. The parents that were coming in were new from out of state, and they wanted something done. So they hired him and they got rid of one of the principals and everyone he was hiring, which was related to him.

Melissa Barton: Oh my.

Sharon daVanport: Mmm.

Melissa Barton: Oh, my gosh.

Yvonne: So they’re basically going from their upbringing, and it could be a very bad upbringing. They just dismiss anything that’s taught in the college. I have taught also special classes in the summer for them. We’ve had a challenge with one teacher, who…Well, a friend of mine has a PhD in education, and he was hired by a school district here to clean it out. It was so bad with nepotism and cliques. The parents that were coming in were new from out of state, and they wanted something done. So they hired him and they got rid of one of the principals and everyone he was hiring, which was related to him.

Melissa Barton: Oh my.

Yvonne: These were all cronies. And this happens a lot in smaller cities and smaller towns in particular, where they can have complete control over a niche. Also, when they go to the colleges, I hear from some of my other colleagues, when the teacher may take a summer course and she will say: “Ugh. I don’t have to learn this. I know this all.” They don’t. They have some of the poorest background in some of the materials that they do.

It’s all about the cliques. It’s all about protecting their job and ego. Until we pay more, and until we keep the good teachers in that are spending all their time studying, this is gonna continue to happen.

Sharon daVanport: Like you said earlier, Melissa, a lot of the parents, they just get intimidated and they just don’t have the desire to follow through, because it gets so exhausting. That is why I think that…like, what Yvonne said. She’s proud of you. We’re all just so proud.

Yvonne: Melissa, I have walked in your shoes, where people were intimidating my daughter in a situation where another teacher was being picked on. It was a book burning situation. And a couple of, I would say, children who set [the teacher?] up. She was using a rubber chicken, and they thought that was pornographic.

Melissa Barton: Oh, my gosh.

Yvonne: It was just to toss up in the air, some game with music. And it got very, very bad, and we won that case. But I will tell you, the teachers and parents went on a divide. I have never seen such horrific behavior with people I had known. Like you, I stuck by that teacher, though. ‘Cause she was really an excellent teacher. She would faint when she was walking down the hall and I would have to hold her up. And some parents, like you said, didn’t want to get involved. One sent her flowers, and was a friend of mine. I said: “Alice, why did you send her flowers? And you did it before class so she wouldn’t know who it was.” What kind of support is that?

Melissa Barton: Ugh. And I have had parents do that. I have had parents do that. With children on the spectrum. I have had parents do that to me. My thought is: “You have to stand up too. I’m here to fight for my son. I don’t represent anybody but my child. If I can change the future for other children, I will.

Yvonne: Melissa, you’re doing it for every child. Something like this does not need to exist.

Melissa Barton: Hopefully. And I have had parents: “You don’t represent me.” I have had parents say to me: “You don’t represent my child.” And you’re right. You represent your child. That child was born to you, not me. You represent your child. I have had the same anonymous support, but I’ve had spectacular support as well. I’ve had people who are willing to go to the end of the earth to prevent the teacher from ever teaching again.

I’ve always kept my husband out of the media, because he’s a very shy person and he has a very public job. But clients of his have been talking about the case, and he would say: “That’s my wife.” They’d follow up with him and they’d say: “I was a principal for X amount of years” or this or that, and they make sure that they check on the case and they do as much as they can to support us. People wanna want to put together pickets and go back to St. Lucie County. This is gonna change St. Lucie County, its policies and procedures.

Sharon daVanport: Exactly.

Melissa Barton: And the government stepping in. That’s what’s gonna change. We don’t need hostility. I could’ve had pickets organized all year long, but we need to have some intelligent change and some true change. That’s what I’m going for.

Sharon daVanport: Good for you, Melissa.

Yvonne: Good for you. I’ll let you go now, but we are very proud and please keep us updated on everything.

Melissa Barton: Of course. Of course.

Sharon daVanport: Thanks for calling in, Yvonne. I’ll talk to you in a little bit.

Yvonne: Bye-bye.

Sharon daVanport: Well, Melissa, this has been just such a great show, and we’re almost out of time, and I just want to thank you so much again for coming on and sharing your story. It must get exhausting. Do you get tired sometimes just talking about this?

Melissa Barton: I get very tired. Working with the media is incredibly exhausting. It’s a whole ‘nother show. A lot of people my whole life I’ve heard say: “Well, the media’s horrible! They lie,” this and that. They really don’t. I have had one newspaper and TCPalm, their opinion editor, they’ve just been horrible to me and saying some really nasty things. His name is Anthony Westbury. Almost from the get-go he’s written really nasty articles.

But that’s about it. Out of all the reporters I’ve worked with, that’s it. Everyone else has been so supportive and they’ve really looked for the truth and they’ve really dug and found the truth. Every time, they say to me: “I cannot believe this is happening in our day and age.” And they do everything they can to make it a fair story, and to make it from all angles.

It’s exhausting working with the media. It’s incredibly exhausting. They’ll call you and they’ll [unknown] to be in New York tomorrow morning, and it’s 9:00 at night. It’s exhausting. That’s my only sounding board, but the only way people are going to listen is if a lot of people know what’s going on. I will continue to talk to media for as long as I possibly can do.

Sharon daVanport: Well, you know, Melissa, I wanna thank you personally as someone, I’m on the spectrum, I have a son who is in high school who’s on the spectrum and he has an IEP. I wanna thank you personally for following through with this. I wanna tell everyone that there’s a group over on Facebook that supports the situation that happened with Alex.

Melissa Barton: And I’m on Facebook, too.

Sharon daVanport: Right. So I want everybody to get over there. I’ve noticed that you post things and updates whenever anything happens that’s eventful, you guys keep it posted and keep it out there. I’m gonna keep in touch with you. I want you to be able to come back on and share with us updates as you get them, even if it’s just a small update or something. If you can just come on and keep us posted this entire process, because I really want to be able to not just show our support, but give you a way to be able to tell everyone in the autism community and other people who listen what’s going on.f

Melissa Barton: Another thing you guys can do is just take the time to read the blog. I hadn’t been until it was pointed out last week to sit down and read the blog. There are some really negative, horrible people out there. My son made the honor roll and people are talking negatively about it. I want you to understand the mentality that takes place, and understand that this is against the children who are on the spectrum.

And this is against parents who want to stand up for their children. Read it. They’ve actually gotten so bad that TCPalm turned off the blogs. I obviously can’t go on to any blog and say anything, because it’s not appropriate and it’s not the right thing to do during our case, but I just want you to read it. Take time to read it, to see the mentality of the people I’m dealing with.

Sharon daVanport: All right. All of us bloggers out there, we need to start going to the blogs and find out what they’re saying about Alex for making the honor roll this year. It’s almost like, something good happens and the people who are not supporting you moving forward with this, they’ve gotta have something bad to say. So we just need to get out there and make sure that we’re following these blogs, and putting in our opinions as well.

Thank you so much, Melissa, for being with us. You’ll come back and keep us updated, right?

Melissa Barton: Call me any time you want to.

Sharon daVanport: All right. Thank you, Melissa. You take care, and give Alex a hug from everyone, okay?

Melissa Barton: I will. I will. Good night.

Sharon daVanport: Good night. All right, everyone, that’s gonna do it for AWA tonight. I just wanna remind everyone, please keep up with this case, go over to Facebook,find Melissa Barton on Facebook, she’s on my page. I follow the group that is in support of Alex over on Facbook. There’s a lot of good information, and you can find all the links to the different appearances and the different places where they’ve had these stories posted.

Something I learned at the very beginning of the show: Melissa was saying that you can go on to Youtube (Warning: videos not captioned) and you can Google a lot of this stuff. A lot of the meetings and different things have been taped. They’ve been filmed. So we can really catch up with all of this and make for sure that we understand that what Melissa’s doing has a potential to really help change the educational system.

So, that’s going to do it for us at AWA Radio. Thank you guys so much over in the chat room. You guys have been awesome. I’ve gotten everybody’s name put down for the drawing next week, so if you were in the chatroom and you were signed in, you automatically are entered for the drawing next week. I will see you guys then, or at least talk to you guys then. Have a great week!

TRIGGER WARNING for people with phobias of mice and rats

I’ve always loved rats, even though I’ve never kept one as a pet. (I’ve had lots of guinea pigs, and a pair of gerbils). I also didn’t know about the African Giant Pouched (Gambian) rat, until I saw one in the Willard remake. And the filmmakers had to digitally sharpen its eyes to make it look scary. Yes, really.

Did you know that Gambian rats can detect landmines? They’re so small that their weight doesn’t trigger a mine if they step on one. An organization called APOPO trains them. They can also screen for tuberculosis by smell. Here’s a video interviewing a rat trainer in Mozambique:

This video is mostly captioned, though there’s music in it, too. But when the interviewee says: “this one? yea, because I…It’s one of the rats, which I have now here. Which I trained from a youngster,” he’s responding to the question: “Why is he your favorite rat?”

See a mine-sniffing rat at work! (No mines explode in the video).

(A Gambian rat on a leash attached to a zipline. It walks back and forth along the zipline, sniffing for landmines. No necessary auditory cues).

And finally, Rat Loves Cat!:

(A large white rat follows an orange tabby cat around–including climbing up a basket the cat is on top of–grooms him, etc. They snuggle together, and the cat grooms her, too. No significant auditory cues, though there is music throughout).

Listen to me go on! Over to you. Talk about whatever your heart desires!

From True Compass by Edward M. Kennedy:

“My eldest sister, Rosemary, was twenty-three in 1941. Luminously pretty and round-faced, with a widow’s peak, dark brows, and a great smile that dimpled her cheeks, Rosemary was the one sibling with whom all the others were unfailingly gentle. Her affliction, diagnosed as mental retardation, left her struggling to comprehend things as quickly or as clearly as other people. She was a sweet and loving human being.

Rosemary enriched the humanity of all of us. Our sister Eunice seemed always to be near her, helping her through simple childhood games such as dodgeball, inviting her along and giving her assignments in sailing races. As she grew into adolescence, Rosemary knew she could count on Jack or Joe to escort her to dances at the Yacht Club at the Cape, or to the Stork Club in New York. I looked out for her too, when I could, although I was fourteen years younger–she was my godmother, after all. Dad wrote affectionate letters to her from abroad, and Mother actually altered her own handwriting from the swirling ‘fine Spencerian hand’ on which she’d prided herself, to a simpler style that imitated typographic print, so that Rosemary would have less trouble following it.

But in the fall of that year, our father, concerned that Rosemary’s condition would pose insurmountable dangers to her as an adult woman in the world, listened to doctors who assured him that a new form of neurosurgery would greatly benefit her and improve her quality of life. The doctors were wrong, the surgery further injured Rosie, and my parents were devastated. I, of course, knew and understood nothing of what had happened. Rosemary spent her remaining sixty-three years mostly in comfortable supervision at her home in a Catholic community in Wisconsin. Over the years, through her regular visits to Eunice’s home or her summer days on Cape Cod or wintertime in Florida or Thanksgiving at Jean’s, Rosemary remained a loving and inspirational presence in our family, not just for her siblings, but for the next generations as well.” (pp. 25-6)

FWD/Forward is a new group blog of/for feminists with disabilities. From the Mission Statement:

It is a place to discuss disability issues and the intersection between feminism and disability rights activism. The content here ranges from basic information which is designed to introduce people who are new to disability issues or feminism to some core concepts, to more advanced topics, with the goal of promoting discussion, conversation, fellowship, and education.

This site does not claim to speak for all feminists with disabilities. However, we are trying to cultivate a broad perspective which incorporates as many experiences and viewpoints as possible. We have attempted to assemble a diverse team of contributors with a broad spectrum of disabilities who come from different cultural, racial, religious, and class backgrounds, as well as age groups, and we welcome contributions such as guest posts, suggestions for article topics, and engagement in the comments from people interested in disability issues, disability feminism, and related topics, especially if those contributions will broaden our perspective.

We are very committed to accessibility; we want everyone to be able to enjoy our content. To that end, we commit to fully captioning and describing any images published here, transcribing text in images and audio content, and taking any other steps which can improve accessibility. We also welcome translation of our content into other languages. If you identify an accessibility issue here, we most definitely want to hear about it.

The site has just started up, but there’s lots of really excellent stuff there already, including an Ableist Word Profile series, and a series “about representations of disability in movies, television shows, and books.” (The series’s inaugural post examines the television show Joan of Arcadia.)

It’s awesome. Get thee over to disabledfeminists.com and check it out.

I don’t know much about James Cameron’s upcoming sci-fi film Avatar. (Not to be confused with the live-action film based on Avatar: The Last Airbender, which I…did. Only briefly, though!). The tale of a paralyzed ex-Marine who can remotely control an alien being, it seems to tick off all the boxes of the things I write about here. (Is it just me, or is there something World of Warcraft-y about the alien’s planet?)

I’m interested to see if Avatar handles its “guy-in-a-wheelchair who controls another creature” story differently than other films have done.

Last week Sweet Perdition had its busiest day ever, and the past two days have each been busier than the previous winner:

This development is partly thanks to this post about the film Orphan. There’s a lesson for me somewhere about organization, managing my mental spoons, and writing about things in a timely manner. (I’d been planning on using Orphan to write about the “bad seed” sub-genre in general and cultural anxieties about disabled children. so was gathering my thoughts in a disability analysis direction seriously for days–and, much less intensely, for months–before I saw the movie).

The other lesson is that people want to know things–and, unfortunately, many searchers’ Orphan-related questions weren’t answered at all. While I hope some of them stuck around for the analysis of disability anyway, it totally sucks to not get the answers you seek. So, Internets, I apologize. And I’m here to make it up to you. Let’s begin, shall we?

What song does Esther sing?

“The Glory of Love”–not to be confused with Peter Cetera’s “Glory of Love.” It was written by Billy Hill, and has been recorded many times: most notably by Benny Goodman (1936) Peggy Lee (1959), Dean Martin (1966), Eddy Arnold (1969), Otis Redding, and Bette Midler for the film Beaches. (Lyrics for the Bette Midler version). The version played during Orphan’s end credits is sung by Jimmy Durante.

Did two different actresses play Esther?

My mom wondered this, too; she told me that in some scenes Esther had freckles but in others she didn’t. (Being me, I didn’t notice). But Esther is played by 12-year-old Isabelle Fuhrman (Hounddog), and I haven’t found any references to a second actress.

What is Max’s real name?

In the film, “Max” is short for “Maxine,” and Aryana Engineer is the actress who plays her.

Is she really deaf?

Miss Engineer’s resume at IMDB says she has “mild hearing loss.” In an interview at IESB.net, Vera Farmiga (Kate) was asked about learning American Sign Language. She replied:

“It wasn’t a tremendous effort. We went pretty quickly, after the whole thing came together, so there wasn’t much pre-production. But, Aryana Engineer was hard of hearing and we wanted to just have the easiest and fullest communication, so we all dabbled, as much as we could, in trying to learn the language beforehand. And then, we could communicate with her, just by speaking very loudly and gesticulating madly.”

What’s the name of the mental institution?

The Saarne Institute. Ontario’s Alma College (St. Thomas) “stars” as the building.

Here’s a transcript of Tony Attwood’s appearance on the Asperger Women’s Association podcast at Blogtalk Radio. This is the second half of the podcast; part 1 is here. If you’ve noticed any errors I’ve made, please let me know:

Sharon daVanport: Hey, Doctor Attwood? I just wanted to say that I know your time is limited and I’m sorry, I was like watching the chat room, the switchboard and I wanna be able to wrap things up for you so that you’re not late. I know you have to get out the door in just a couple minutes, and Ari–

Dr. Tony Attwood: I do indeed, yes.

Sharon daVanport: Yes, and Ari did say that he would stay and answer a few questions for some of the people in the chat room, and any of the callers who are calling in. I don’t know what your time limit is there, but I have someone who’s a big supporter of yours, Dr. Attwood, and who would like to speak with you on the phone. Is that okay? He actually has a question for Ari, so if I can bring him on, he can ask his question and then you can say your goodbyes. Can we do that?

Dr. Tony Attwood: Okay, that’s fine. Yep.

Sharon daVanport: Okay, all right. I’m going to bring on–this is the [area code]. Let’s see here. All right, [area code]?

Chris: Hello, Sharon?

Sharon daVanport: Yes. [laughter] Is this Chris? Hi.

Chris: Yes, thank you.

Ari Ne’eman: Hello, Chris. Thank you for joining us.

Chris: Uh, Tony, all I want to say, is I think that you can best support us by supporting our family members, which is exactly what you’re doing. I’m autistic, I’m an Asperger’s by the way, I’m on the spectrum. I’m a great supporter of yours. Out of all the resources we have, I think our family and friends are the greatest resource we have.

You know, it’s very hard living with someone on the spectrum, and that’s just a reality. It has [nothing?] to do with blame, it’s a reality. And I think when you support one of our family members, either through your association with FAAAS or through your conferences, you’re multiplying your effectiveness a tremendous amount. You help 10 NTs, they go back and help 10 or more family members. It’s a huge help to us. I know that you help thousands of people annually through your tireless work, and I want you to know personally that many of us know and appreciate these efforts. We owe you a tremendous amount. We do not…we are not all supporting Ari or ASAN, and I hope that’s very, very clear to you. We owe you a great debt of gratitude.

Tony Attwood: Thank you. I appreciate that very much, and know that was extremely heartfelt. My own view is that I have dedicated my life to help other people understand and appreciate those with autism and Asperger’s Syndrome. The presentations I give very much give energy and heart to family members. It gives them ideas, it gives them explanations and so on. That is my goal in life, really, is to help the world accept and encourage those with Asperger’s Syndrome. I know it’s a trite statement: to realize their potential. But, basically, for people with Asperger Syndrome to be happy and valued.

Sharon daVanport: Thank you, Dr. Attwood.

Chris: [unknown] that recognize that, thank you. I’ll see you in Portland, by the way, Tony. I’m gonna be at the conference on Thursday.

Dr. Tony Attwood: Okay, see you then.

Ari Ne’eman: We’ll see you in Portland, too, Dr. Attwood.

Dr. Tony Attwood: Oh, Ari, so you’re coming there as well?

Ari Ne’eman: No, but some people from our organization will. So, look–looking forward to it.

Dr. Tony Attwood: Okay, now, Sharon, I must dash at this stage, but thank you for allowing this conversation to occur.

Sharon daVanport: Well, I really thank you so much, and AWA thanks you, and we’re very excited. Our executive director, Yvonne, whom you know, she will be attending the conference in a couple weeks in Brisbane, Australia: the first ever autism women’s conference. So, AWA will be represented there, and she’s so much looking forward to meeting with you when she’s there. And thank you so much, Dr. Attwood.

Dr. Tony Attwood: Okay.

Sharon daVanport: You have a safe rest of your trip, okay?

Dr. Tony Attwood: Sharon, just before you go. One of the things that we’re looking at is the possiblity of doing a woman’s and girls’ conference in America next year.

Sharon daVanport: Oh, that would be wonderful.

Dr. Tony Attwood: The intention being then to record it so that it can be used by other people to really address those particular issues, which I think need to be raised in their own right.

Sharon daVanport: Oh, well, we’ll stay in touch with you about that, definitely, Dr. Attwood.

Dr. Tony Attwood: Yeah. Okay, thanks Sharon, and fairwell to Ari.

Ari Ne’eman: All the best, Dr. Attwood, and, yes. I hope you enjoy your dinner plans.

Dr. Tony Attwood: Thank you. Okay, bye.

Sharon daVanport: All right. Ari, you still with us? Chris, you still with us?

Ari Ne’eman: I am indeed.

Chris: Yes, I am.

Ari Ne’eman: Oh, Chris, you had a question for me. By all means, ask.

Chris: I have a whole bunch of ‘em, but I’m not sure how many we’ll get to, so–

Ari Ne’eman: …We’ll leave it to one, because I think there are some other callers, but I’m very eager to hear your question, Chris, and thank you.

Chris: My main question is: is the only issue here legal? Are there no other issues? Are there no other valid concerns? Is Asperger’s only affecting us? Like, I just can’t believe really…there are a lot of family members that are trying their best and doing their best, and all I’ve heard is, you know, the legal issue, and that’s it. So I’m gonna say: Do we have any responsibility whatsoever to try and address the legitimate concerns and the legitimate difficulties that others have?

Ari Ne’eman: Well, I think we do. I think we certainly do, Chris. And, you know, the greater part of my advocacy is around issues that are oriented to things that I think that self-advocates and families are equally concerned about. Sometimes the families are more concerned about. I’ve always been–

Chris: You said that that’s your opinion, that you try and advocate for things you think they are concerned about. Has there ever been a poll done or any questions to find out what they are concerned about and whether you’re on the right track?

Ari Ne’eman: Well, there’s never been a longitudinal study–

Chris: No, no, no–

Ari Ne’eman: –but I think it’s a safe bet that parents are concerned about [Crosstalk Then:] Look, are you gonna let me finish, Chris, or are you going to–

Chris: Well–

Ari Ne’eman: –interrupt me?

Chris: Well, I–okay, go on.

Ari Ne’eman: I think it’s a safe bet that parents are concerned about education policy and things like restraint and seclusion. I think it’s a safe bet that spouses are concerned–

Chris: No.

Ari Ne’eman: Well, I guess it’s possible that parents aren’t concerned about special education policy and they’re not concerned about their kids getting restrained–

Chris: [Is there something?] on your website [now?] [Is there something?] on your website [now?]

Ari Ne’eman: But there’s not really a scientific way to try and find out what the great majority of parents–

Chris: Look at reality, Ari. Look at reality.

Ari Ne’eman: I would say, looking at reality says very clearly that parents are gonna be concerned about their kids being restrained and secluded and–

Chris: That is your opinion–

Ari Ne’eman: –abuse in schools.

Chris: And how…and let’s say, I think there’s how many in the States? 250 million? Let’s say–

Ari Ne’eman: There’s 380 million.

Chris: Okay, thank you. 380 million. 1 in 100 has Asperger’s, so that’s about 3.8 million. Of those 3.8 million, how many do you think are restrained?

Ari Ne’eman: Well, according to…I can’t get an exact statistic, but according to the National Disability Rights–

Chris: [unknown[ those 3.8 million are a lot more concerned about adequate services, about respite care for their parents, about vocational training--

Ari Ne'eman: Actually, we advocate for all those things, too. In fact, one of--

Chris: Advocating is asking other people for things. I think advocating is pretty darn easy. You can sit in an armchair, you can say "Give me this, give me that." [unknown]

Ari Ne’eman: Well, no, Chris, have you ever tried advocating? Cuz I would say, speaking as somebody who has dedicated quite some time to working to try and fix the very significant problems that prevent those families and autistic people from getting access to services, from stopping abuse, which is endemic according to the leading authorities in this nation, and according to no less an authority than our own Congress and Secretary of Education.

I would say that those things are pretty hard. I don’t think that the disability rights movement, which has consistently worked to change the situation for people with disabilities in this country are a group of armchair generals. And I think we work with service providers. We work with support organizations–

Chris: I’m not saying that’s not important. What I’m saying is, in the grand scheme of things, in terms of the number of people affected, and their needs today…Obviously abuse is a tremendous issue. I’ve read some of those studies. I know what’s going on. I know it’s horrible.

But I’m just speculating that the vast majority of parents with Asperger children, that’s not their primary concern. If you’re in that situation, it’s a tremendous concern. But for the vast majority, I think that there’s a lot more efforts that could be put into, you know, providing services, advocating for–

Sharon daVanport: You know, Chris, I would say–

Ari Ne’eman: Chris, we are engaged in those efforts. We recently fought to get billions more dollars for IDEA and to make it easier for families to get that money spent on services for their kids.

Chris: Okay.

Ari Ne’eman: We’ve fought for the extension of more supports for adults across the spectrum, and we’ve often been fighting side by side with families. So I think, Chris, in a very real way, you’re making a straw man argument here, because all those things–ranging from respite care to services and supports, to other areas–we’ve fought for those things. Not only that, but we’ve actively participated in trying to make those things better, not just by working with Congress and legislatures, but by working with provider organizations, by working with family organizations.

We’ve never said that families and providers shouldn’t have a voice at the table. The problem is, right now, the voice is all families and providers, and we believe…It’s a novel concept in the autism world, Chris, but we believe that it makes some sense to have autistic people involved when you’re talking about autism.

Chris: [unknown]

Sharon daVanport: Chris and Ari, I just…I think this is a great conversation, but I don’t wanna ignore everyone else–

Chris: Sure.

Sharon daVanport: But I do wanna say one thing on…just to kind of bring together what both of you are saying. I do understand, Chris, where you’re coming from. On one hand, I truly do. And I also understand, as an autistic individual, what Ari is saying. We get the same thing when it comes to AWA. We’ve had many, many people say: “Well, why do you have an organization that’s just for women?”

Chris: Okay.

Sharon daVanport: And it’s really not just for women, because like Dr. Attwood has expressed, and many other experts in the field of autism have said, that when you understand the distinct qualities and the unique qualities that are attributed to females–more likely attributed to females on the spectrum–it’s gonna give us a greater understanding of the spectrum as a whole.

Chris: Right.

Sharon daVanport: So, because we’re under-represented in this community, and usually diagnosed later in life, it does make sense to have an organization where we can, you know, facilitate all of that information and those resources. So, I know…I do appreciate ASAN and the fact that they give a voice to me. You know, when I wear my hat [for the?] ASA and our organization stands for certain things, you know I…and we don’t advocate, I’m not in a position where I can do that. However, as a person and an individual outside of the AWA, there are many causes and things that I’ll render my opinion for–

Chris: Right.

Sharon daVanport: –and give statement to, so I can see both sides of it, I truly can.

Chris: Right.

Sharon daVanport: And I really appreciate you calling in.

Chris: So ASAN plays a role, AWA plays a role, FAAAS serves a role. Family members have needs, women have needs, autistic people have needs. They all [serve?] a valuable purpose. Thanks, Sharon.

Sharon daVanport: Thank you for calling in, Chris. We have a couple other callers, so–

Chris: Oh, I really appreciate it.

Sharon daVanport: Okay, you’re welcome. I’ll see you over on Twitter. [Laughter]

Chris: Okay. Bye.

Sharon daVanport: Okay, alrighty. Bye-bye. Okay, Ari. How are you doing there? [laughter]

Ari Ne’eman: Oh, I’m doing quite well.

Sharon daVanport: You’re not overstimulated yet? My heart was pounding for a little while there. I…

Ari Ne’eman: Aw, no.[unknown] When you work in the field of advocacy, you have to learn to have a thick skin.

Sharon daVanport: Right.

Ari Ne’eman: The bottom line, as far as we’re concerned, though, is that we as a community need to come together in order to try and change the picture for adults and young adults on the spectrum, and children, and our families. And we’re stronger when we’re coming together. We’re stronger when we’re not simply accepting things the way they are, but we’re working in a collaborative fashion to make real change in our society. That’s always been my vision. That’s always been ASAN’s vision, and more importantly, that’s been the vision of the autistic community, which I’ve been fortunate enough to be able to be a participant in these past several years.

Sharon daVanport: Right. I know we covered this in your first interview with AWA Radio a few weeks ago, but I’d like for you to touch on…well, elaborate, really, on what you were just saying, and bring it into line with the objection that Chris had, and the concerns that he had. If you could explain to our listeners why an organization like ASAN…why it’s important to understand what you do and how you even benefit people who are the very people who may stand against you. Who say, “Well, we don’t want you to speak for us.” Can you tell them how important it is politically to have an organization that says, “Even if you don’t stand for us, we’re giving you a voice, whether you know it or not”? Can you elaborate on that?

Ari Ne’eman: I mean, personally I think ASAN speaks for the people who support ASAN, and no one organization, and no one individual can speak for everybody. That’s why I encourage as many autistic people and non-autistic people as possible to get involved and to be active. Um, but I will say that, you know, in a very real way, we’ve been advocating with the cross-disability community–

Sharon daVanport: Right.

Ari Ne’eman: –and with the broader autism and autistic community for those very things, like services and supports.

Sharon daVanport: Right.

Ari Ne’eman: You know, I’ve personally traveled to IEP meetings and used the experiences I’ve had as somebody who’s having my own, to try and help parents get the services that they need for their child. And at the same time, you know, I’ve also tried to work with adults on the spectrum to get the services we need from systems which often don’t understand us, like Voc Rehab–

Sharon daVanport: Right.

Ari Ne’eman: –and others. So, it’s certainly true that we need to be out there, and we need to be advocating to get the things that are available. But we also need to be trying to make more things available, and to do that requires some level of advocacy. There’s a phrase that Ed Roberts coined, and Ed Roberts is a really good model here, because he not only was an excellent advocate, but he helped create one of the most important disability support infrastructures: the Independent Living Centers. And the phrase is “advocrat”; it’s a mix between “advocate” and “bureaucrat.” And it’s a position that many disability rights advocates often find ourselves in, because we have to work on both trying to get people services and supports, which is a huge part of our work, and–

Sharon daVanport: How do you spell that, Ari? Advocrat. Is it A-D-V-O-C-R-A-T advocrat?

Ari Ne’eman: Uh, yeah. Yeah.

Sharon daVanport: Okay.

Ari Ne’eman: It’s sort of a made-up word, but I think it’s one that describes to some extent the sort of stuff that we in the disability rights community have to do fairly well.

Sharon daVanport: Right. I gues the point that I was trying to make was the point that even if some people may not agree with the concept of ASAN and bring up some points that maybe Chris was saying, it doesn’t nonetheless mean that the work that you’re doing doesn’t benefit them in some way, the political work thta you do, and like you said, with the cross-disability community, and going to Washington, and some of the laws that you’re supporting to get passed, you know, and what ASAN has attached their name to has benefited everyone in the autism community greatly. And that’s more or less the point I was trying to make, is that–

Ari Ne’eman: Well, I appreciate that, Sharon, I really do. And in another way, I also really appreciate Chris’s comments, because I think Chris is putting lie to one of the things that FAAAS puts out there: that autistic people are unempathetic, and aren’t concerned about the problems facing family members, and–

Sharon daVanport: Right.

Ari Ne’eman: –and non-autistic people. Now, we’re certainly concerned about those things in our advocacy and our support activities, but Chris has shown that he as an autistic person is so concerned about it that he’s making it his first priority. I may disagree with how he interprets that, I may disagree with how he mischaracterizes our work, but at the same time, Chris himself, as an individual, is an excellent example of why the characterization of autistic people that FAAAS puts out is false.

Sharon daVanport: Okay.

Ari Ne’eman: Do we have another caller?

Sharon daVanport: I do. I was gonna say that.

Ari Ne’eman: [Laughter]

Sharon daVanport: We’re gonna go to the phone lines right now, because we do. We have quite a few callers here. We have a caller from the [area code] that I’m going to bring on. [area code], you’re on the air.

Katie: Hi, this is Katie.

Sharon daVanport: Hi, Katie.

Ari Ne’eman: Hello, Katie.

Sharon daVanport: How are you? [Laughter]

Katie: I’m good. I had a comment, like a long time ago, and now the conversation’s changed [Ari, Sharon, and Katie laugh]. But I was gonna say that…in regards to Tony Attwood and everything, I think what he was saying about, “Oh, you know, it’s good to be a support organization, to help people.” Yeah, that’s great. If FAAAS was only a support organization, sure, we may not agree with all of their views, [but?] I don’t think…at least I as a person wouldn’t have as big of a problem with them. What I have the biggest problem with is institutionalizing…you know, writing discrimination into the law. And although Tony himself says he doesn’t condone that, he is attaching himself to an organization that does, and you can’t separate the support group from the political advocacy that FAAAS does…[they're?] the same thing. I mean, if they split off into two groups and called them two different things, that would be different. But, I think that–

Ari Ne’eman: –That the right hand knows what the left hand is doing, exactly, Katie.

Katie: Yeah [unknown] that saying, but, yeah.

Sharon daVanport: And that brings me back to how Dr. Attwood was explaining the political differences. And perhaps, you know, I can’t speak for Dr. Attwood and I’m not gonna…am by no means doing this at this point. It just makes me wonder, though, if, because he does live in a different country and he may not know, you know, the political atmosphere that–

Ari Ne’eman: I think when you attach yourself–

Sharon daVanport: Pardon me?

Ari Ne’eman: [Laughter]

Katie: I don’t think he’s that dumb.

Sharon daVanport: No, no, no. I’m not saying. That’s not the point I was…I’m sorry, Katie, I probably didn’t make myself clear. I wasn’t making that…I wasn’t alluding to that or even…trying to even say that, you know, I felt that he was unaware. I think he brought out the point that he was aware that there are political differences, but he was basing his role…now, I could be wrong. He could correct me in an e-mail or call me about this. I think he was basing his role as an advisory board member as someone who clinically advise[s?]. Now, isn’t that what he stated, or did I misunderstand…

Ari Ne’eman: I think that’s some level what he said, but I guess, if that’s what he’s saying, then I have concerns with the kind of clinical representation of how FAAAS characterizes the spectrum, too. FAAAS does continuing education; FAAAS allies write things in social work and family law journals, so…and many of those things are patently inaccurate: that present autistic people as incapable of empathy, that go back to the old Thoery of Mind canard, which good research disproved some time ago.

Katie: Right. And, Ari, I wanna agree with you here, that, like, you know, FAAAS is putting all this stuff out there that’s not true. And Tony himself [unknown] may not agree with those statements, but he’s not really doing anything to change what FAAAS is putting out. He’s still aligning himself with them. And that’s what I have a problem with.

Ari Ne’eman: Well, in fairness, he got the name changed. I mean, 5 years on the advisory board, he got the name changed. [laughter]

Sharon daVanport: You know, maybe that’s indicative of the fact that they do listen to him. We can be happy about that, if they’re…

Katie: Yeah.

Ari Ne’eman: I don’t know how…I mean, to what extent that’s true. I think if you’ve been involved with an organization that’s literally trying to write discrimination into the law for over 5 years, and the only thing you’ve done is to make it have a better name? I think you have more of a responsibility to the people you’re talking about.

Katie: Yeah, and he’s [CROSSTALK] [unknown] Dr Attwood is saying, “Oh, I’m just a supporter.” I mean, he’s saying: “Oh, I have nothing to do with the political stuff. I’m not responsible for that. All I do is help people.” But, I think he does have a responsibility.

Sharon daVanport: And I do think that…did you not?…and I don’t know if I’m coming off like some Polyanna kind of person here, and I don’t [laughter] want people to misinterpret, you know, my stand on this at all, you know. I mean, I really do not agree at all with FAAAS, and it really is something that has, on a personal level has, you know–and this is personal, this is not an AWA statement, this is Sharon DeVanport–I have to say that, you know, it’s extremely troubling to me. I will say that.

I do, however, have to say that it does give me great encouragement that Dr. Attwood…I did specifically ask him–I don’t know how many of you might have heard this, it was right before I brought Ari on–I did specifically ask him if he would consider, you know, stepping away from FAAAS or any organization if he saw that they were not going to heed, you know, his suggestions on changing the language; on changing the views. And he did say that he would. I’m wondering if, you know, just the latest points that Ari has brought up, and the gravity of all of this, and the attention that it’s gotten, I’m just hoping that, if FAAAS doesn’t make any changes like that, then we can look forward to seeing Dr. Atwood, you know, continue his–

Ari Ne’eman: It didn’t sound like it, but we…you know, hope springs eternal, Sharon.

Sharon daVanport: Right [laughter].

Ari Ne’eman: I guess, to me, my concern here is…I remember some of the first advocates who raised concerns, and a lot of the first advocates who were raising these concerns weren’t actually autistic people. They were actually spouses and family members of autistic people who, you know, were quite vocal in saying: “The way you’re talking about our spouses and our family members isn’t accurate.” And FAAAS’s response to that was to write off those complaints, and, in fact, to state that autistic people–because they generally characterize any of their critics as autistic people, regardless of whether or not they are–are incapable of understanding other people’s point of view.

So, it’s sort of a sweet scam where you can find it, because according to their logic, no criticism…no response that we can ever make to them can be a legitimate one, because, according to them, we’re simply working on faulty wiring. So that’s why I’m not terribly encouraged by the prospect of any internal change there. But, you know, I share your hope, Sharon, that Dr. Attwood will change his point of view on this. I’m not quite as optimistic, but I share your hope.

Sharon daVanport: Well, well thank you. I’m glad that you do. We can agree on that one, right, Ari? [Laughter] We’re gonna be hopeful, okay? Maybe me a little bit more than you, but that’s what makes our differences. [laughter from Sharon and Ari] I do wanna ask if you’d do somthing for us, Ari, for our listeners before I bring another caller on. Could you let our listeners know where they can go to read up on some of the points that you were making that are concerning to you about FAAAS? Do you know the–?

Ari Ne’eman: Well, they should come to our website at www.autisticadvocacy.org, and we have a link to our petition around encouraging Dr. Attwood to dissassociate himself with hate organizations. We have a link to our response which sources much of the things we are referring to here. So, um, yeah, by all means, come to www.autisticadvocacy.org or e-mail us at info AT autisticadvocacy DOT org. I’m running behind, but I would be willing to take one more caller. Excepting, of course, that it will have to be necessarily brief.

Sharon daVanport: Okay, so, I’ll bring a caller on and they’re gonna have to be brief, so let’s see…

Katie: I’m still online, so you should probably boot me off if you haven’t.

Ari Ne’eman: [laughter] Oh, Katie, thank you for joining us.

Sharon daVanport: [area code] you’re on the air.

: Hello? Is this on? [CROSSTALK] Oh, yes, I had to switch phones, because I ran out of batteries.

Sharon daVanport: I recognized the area code, I knew it was [place,] but I didn’t see that…it was usually from a different number that you usually call from.

Yvonne: Oh, yeah. This is my personal private number. One of the things I want to say, what I see in all this is, I think Dr. Attwood is taking the stance of what many attorneys do when they have to represent clients who are murderers, who are serial killers, anything like this. I’m serious.

Ari Ne’eman: Geez. I just said they were like the KKK, you’re saying they’re worse. [laughter]–

Sharon daVanport: No, no, no. This isn’t [unknown].

Ari Ne’eman:I thought I’d gone too far. [Laughter]

Yvonne: Ari, Ari, I didn’t say FAAAS–

Ari Ne’eman: I know, I know. I’m just fooling. I’m just fooling. Don’t worry.

Yvonne: A lot of professionals feel they have to be impartial, and so they will try to help even organizations that they don’t necessarily agree with what they have, especially when they’ve morphed like they have in the several years with the group of few women who came on who have very new dregrees, very limited education…I mean not education but experience, and they’re flooding the market with papers that, if you read their references, it doesn’t really follow Dr. Attwood, they stem off of it. And most people don’t eve read the reference; they see “Attwood” there and they assume that he’s acknowledging that.

Many attorneys go through this when people say: “How can you represent a pedophile? How can you represent someone like this?” And they have to put themselves in a place where they’re non-objective and do their professional work. I feel this was the approach that Dr. Attwood was in this taking, but, you know, that is something he’s gonna have to deal with. I also see where they are using him. And he’s gonna call it as a little “poppycock” or whatever the term–

Ari Ne’eman: He’s letting himself be used. He can–

Yvonne: Well, people need time. People need time to look at their professional approach to it, because attorneys will not give up a case that the public absolutely has convicted the person [unknown]–

Ari Ne’eman: Well, attorneys have a moral responsibility to represent their clients–

Yvonne: So do psychologists. So do psychologists.

Ari Ne’eman: If Dr. Attwood views FAAAS as a recipient of mental health services from him in a professional capacity, I will not argue. But I guess I haven’t interpreted his comments that way. But at the same time, you know, the bottom line here is that it is a free country, and Dr. Attwood is free to affiliate with FAAAS if he so chooses. But the flip side of that is that we, as people who have to face the consequences of his decision, we are free to make what judgements we will as a result of that.

Yvonne: But that happens with the victim witness program in crime. As much as I’ve worked with the victim witness program for decades. The same thing happened. You have attorneys who are representing these persons, and we developed just only like 30 years ago victim witness programs to help the people who feel that they were hurt by this; that the person gets representation from the best, and they get no one. But you have to realize that doctors as well as lawyers overlook anything they feel about that particular person’s politics, and often will approach it medically. That’s how some doctors feel. Some don’t: Dr. Phil will jump on anything that’ll give him 15 minutes of fame on his program.

Ari Ne’eman: Well, I would just wonder why Dr. Attwood can’t advise this organization without attaching his name to it. Because to me, that’s a different level here, and the responsibilities of a psychologist are different from the responsibilities of an attorney, and I think–

Yvonne: Not really, in terms of client/patient…Client/patients are the same, [they have rights?]–

Ari Ne’eman: But FAAAS isn’t his patient.

Yvonne: No, but the patients are with FAAAS, and that’s who he’s serving, and he’s advising. He’s advising those particular–

Ari Ne’eman: Didn’t he just say that the totality of his involvement was changing the name? He hasn’t been engaged in an active role within in the organization?

Yvonne: There you go. He’s just had his name on it, and probably wasn’t aware until all this came up. That happens with lawyers, and many people on boards. I see that happen on many boards.

Ari Ne’eman: But he stated, in fact, that, you know, he has had his name on it, and he’s been aware of having his name on it for almost a half-decade now, and if nothing else, he’s aware of it now; I would hope he would take some steps. But, you know, I think–

Yvonne: I think he is; I think he is. I think he’s listening to everyone….huh?

Ari Ne’eman: I think he disagrees; he says he’s not planning on making any changes there. But, you know, I do appreciate you raising this.

Yvonne: I don’t know.

Ari Ne’eman: It’s important for us to try and understand the psychology of Dr. Attwood. Certainly, realizing you’ve made a mistake is never an easy thing. You know, it’s my sincere hope that Dr. Attwood will return to us as a friend in the future, realizing he’s made a mistake, and hopefully cutting ties with this organization that preaches discrimination. But–

Yvonne: Gel. Let’s give it time to gel.

Ari Ne’eman: Yes, let’s. Thank you very much for having me on the show, Sharon. Thank you for joining us, Yvonne, and all the best. I wish our listeners all the best, and if you’ll excuse me. Have a good night.

Sharon daVanport: Thank you. Okay, Yvonne, are you still with us?

Yvonne: I am. I’m here.

Sharon daVanport: Wow. What a show we’ve had tonight, right?

Yvonne: Yes, and I think we’ve accomplished a lot. I think both had a chance to really talk, and that’s really good. I think again, in my opinion, this thing focuses back on F-triple-A-S, and how some of their members are behaving politically. But it, you know, like I said, I heard this in the legal world and the medical world. They have to look at the victim and the patient. They have to look at the person they’re representing, or they’re working as a psychologist for. And those are hard calls; they really are. And they’re legal calls there, too. If he’s giving advice, psychological advice, and things like this. I just think people need some space now to think about it.

Sharon daVanport: Well, remember the first time that I spoke with Ari on the phone about this a couple months ago. I remember the first conversation we had, and, you know, I was explaining the position of the AWA: that we’re not an advocacy organization, and as individuals, we may have our own opinions, and I made very clear to Ari, and you know very clearly how I feel, too, about this.

Yvonne: I don’t support FAAAS. I don’t support them at all.

Sharon daVanport: Right. However, though, as an organization, AWA states in our bylaws that we don’t advocate. However, as individuals, we can state our opinions–

Yvonne: Sure.

Sharon daVanport: But I just think it’s important for people to understand that, because I have been asked that, you know: “What is AWA’s position?” We simply don’t have a position. We’re not gonna make any kind of position…or take any kind of position on it as an organization, because it does state in our bylaws that we are not an advocacy organization.

Yvonne: Exactly.

Sharon daVanport: And you know what Ari said to me? I really like what Ari said. Ari said to me, “And you know what, Sharon?” and I said, “What, Ari?” and he said, “That’s why you’ve got the me’s of the world.” [Laughter from Yvonne] And I’m like, “You know what, Ari, that is right.” So if people wanna question why there are the Aris out there with ASAN, it is because there are many of us who cannot take a forward stand about some of this, maybe because we’ve [attached?] ourselves to organizations, and–

Yvonne: And I support ASAN. I do.

Sharon daVanport: Right. Right.

Yvonne: Personally, and also, AWA supports ASAN, and GRASP as well.

Sharon daVanport: Right. And I just wanted to go back to Dr. Attwood, too. I really do appreciate the fact he knows. He’s very well aware of the controversy, and he still was willing to come on and, you know, speak with us about his book. You know, he had absolutely no hesitancy when I invited him to also take a few minutes at the end of his interview to speak with Ari. He absolutely did not hesitate for a moment. He contacted me right away and said, “Yes, Sharon. That would be fine.” So I really do have to say that I wanna thank him again, and let our listeners know that, you know, he did not hesitate for a moment. And he said he would be happy to speak with Ari. So–

Yvonne: I agree 100 percent.

Sharon daVanport: Right, and we just so appreciate that. Before we wrap up: I went ahead and scheduled for 2 hours, because I had no idea how long this would go or if we would have problems with connections, getting Dr. Attwood on, because I actually had to dial out and get him on [laughter]. I just wanna make sure everything is okay, but it looks like we are gonna kind of wrap things up in a few minutes.

Yvonne: Okay, so one thing before you do, I do wanna say this. I’m putting out a paper. My specialty…I’m an art historian, and art is…my specialty is aesthetics. And this is normal for the art world, where different groups or people have truths, such as doctors, lawyers or religious people will use metaphors from literature; they’ll use visual art, performing art, literature, to give an emotional attachment to their particular truth.

Sharon daVanport: What are you talking about Yvonne, when you say this?

Yvonne: Using the Cassandra metaphor. If you look online, there are like 3 different interpretations of it. There’s also a thing called the Medusa Effect. And there are five different approaches to the Medusa Effect, which I see FAAAS as possibly a lot of the women there having the Medusa Effect. But see, when you use this in a truth, let’s say, in psychological evaluation or politics or religion, it’s no longer art. People have taken that artistic thing that was subjective, and because it’s subjective, spin it into their own web of truth. And they will use that to try and convince people they are right. So it’s an emotional enhancement. And they do it and most of the times it’s okay. It’s done in passing. [Unknown] like the religious [unknown] who thought the purple Teletubby was gay [laughter]. You know.

Sharon daVanport: Yvonne, we can’t hear you, you’re totally…the phone is cracking out. It’s crackling.

Yvonne: Okay. Alright. I just wanna say that they are using this. There will be a paper out on it, and allow people to use their critical thinking skills on this. And I think that will help them to make decisions they normally can’t when it comes to subjective things like art being used in science.

Sharon daVanport: Okay. I’m looking forward to that, Yvonne. I really am. I also wanted to let our listeners know before we close shop tonight that we will be back next week. It’ll be our Monday show, regularly scheduled time: 2:00 Central Standard Time, 3:00 Eastern, and at noon Pacific. And we’re gonna have Kristina Chew on. Kristina actually is a board member of ASAN, and Kristina is a mom to a son who’s on the autism spectrum. And she is going to be talking to us about how she is guiding her son towards embracing his neurodiversity. And she has just done a beautiful job in writing and blogging about her experience and her family’s experience, and we’re really looking forward to her being on next week.

And then the following week we have Dr. Paul Offit coming on. He is the author of Autism’s False Prophets. He has actually worked for the CDC and helped develop some vaccines, so we look forward to speaking to him the following Monday after that on August the third.

So I wanna thank everyone for joining us. I’m gonna leave the chat room up for about 15-20 minutes, so everyone in the chatroom, you guys can go ahead and keep chatting for about…oh, I’ll go ahead and say 20 minutes. And I’ll let you guys know about 5 minutes before I’m gonna shut it down. I wanna thank everyone for being with us this evening; thank Ari with ASAN for joining us with Dr. Attwood, and to also give our thanks to Dr. Attwood as well. This has been AWA Radio on Blogtalk Radio, and we thank you for joining us. Good night.

END

WARNING: Major spoilers for the movie Orphan, including the twist.

Let’s play a game:

A little girl–five years old, maybe six–rushes out of a building. The sign above it says: “School for the Deaf.” She hugs her mother, who greets her in American Sign Language (“Hello, Max!”) They sign cheerfully about Max’s day; at bedtime, Max wants her mother to read her a story. It’s a picture book about a child whose baby sister “went to Heaven” before coming home from the hospital. (Max’s baby sister, Jessica, also went to Heaven before coming home from the hospital; her mother doesn’t want to read this story, but Max insists). Story finished, Max removes her hearing aid, turns off the light, and goes to sleep.

Max’s sister, Esther, is nine years old; the family adopted her just recently. Esther says she is “different.” She’s from Russia, but speaks perfect English with a slight accent. She cuts her food perfectly–so perfectly that brother Danny thinks it is “weird.” At school she wears gorgeous, old-fashioned dresses when other girls are wearing jeans and tee-shirts. She paints like a gifted adult. While taking baths, she sings a song that’s way before her time: “That’s the story of, that’s the glory of looooove!” She understands the word “fuck” as more than just a naughty word that adults say sometimes (“That’s what grownups do. They fuck.”), expertly loads a gun, puts on a black dress and make-up and tries to seduce her adoptive father. (“What are you doing, Esther!?”)

What is Max’s disability impairment? What is Esther’s? And why can we recognize Max’s within five seconds of meeting her, while it takes us nearly two hours to learn–pardon the phrase–what is “wrong with” Esther?

It would be easy to pin this problem on some difference between “visible” and “invisible” disabilities. And it does involve that, I guess…if one considers who is doing the looking.

But, in the case of the new movie Orphan, it’s especially important who’s doing the showing; what stories the filmmakers are using Max’s and Esther’s disabilities to tell.[1]

Orphan stars Vera Farmiga (Joshua, a film with a lot of similar themes) and Peter Sarsgaard (Flightplan, Rendition) as Kate and John Coleman, whose third child died before she was born. They decide to adopt, to “give the love we had for Jessica to someone who needs it,” as Kate says.

But shortly after Esther comes to live with them, weird things start to happen: the girl who made fun of Esther at school slips off the slide at the playground and breaks her ankle, the orphanage’s Sister Abigail disappears after visiting the Colemans, John and Kate find themselves increasingly at each other’s throats and, eventually, Kate is busy Googling antisocial personality disorder. “I think there’s something wrong with Esther,” she says throughout the film, in one form or another.

Eventually, Kate contacts the orphanage that Esther originally came from, and learns that it’s not an orphanage: It’s a mental hospital.

Was Esther born there? Kate wants to know. She has no idea how a little girl could end up in such a place. The doctor says: What little girl?

Esther, you see, is not a little girl at all. Aside from being a serial killer, she has a form of hypopituitarism–panhypopituitarism[2] is my guess–and is thirty-three years old. Her name’s not Esther, either.

Thus, the filmmakers set up Esther’s biology as a deception in itself. The doctor at the mental hospital tells Kate that Esther’s been “passing herself off as a little girl” for years. She is as marked by her impairment as Captain Ahab is by his, or Bond villains by theirs. But Esther’s crime is not just having things “wrong” with her–it’s that everyone had to work so hard to spot those things.

Max is marked by her condition just as much as Esther is; her mark means the same exact thing, though in a different way. Max is everything that Esther isn’t: an American native, the biological daughter, the child who really is a child, the disabled girl who the audience reads as disabled clearly, right away: the Deaf school, signing, Kate saying that “she can hear just enough to lip-read.” By the same token, the filmmakers choose to hide Esther’s condition, to make her seem one thing when she is really something else.

The division between Max and Esther is a division between “visible” and “invisible” disabilities; a division between good cripple and bad, Madonna and whore. And it doesn’t matter who is which.

Let’s play another game:

Esther–thirty-three-year-old Esther, who is often read as a nine-year-old girl, but isn’t one–is going to be a nanny for the Coleman family. (In honor of Peter Sarsgaard, let’s steal a bit from my favorite movie of his. It’s okay: this is a horror movie, after all). Perhaps her condition helps her work; maybe kids find her easy to like and open up to. Esther meets her new charges: son Daniel is nice enough, but his sister Maxine doesn’t talk and sometimes makes strange noises Esther doesn’t understand. Even creepier, when Esther talks to people she can sometimes see Maxine watching her intently from the other side of the room.

In the kitchen, Esther accidentally cuts herself chopping vegetables; Daniel comes running when she screams, but Maxine is drawing in the living room, as if nothing happened. Esther thinks that perhaps she didn’t cut herself at all, but was manipulated by some strange spiritual, mind-controlly force, and Maxine had something to do with it. (Let’s steal from The Omen and Village of the Damned while we’re at it).

Requisite weird stuff happens–I like flying furniture, personally–and Esther decides to high-tail it out of there. Nervously she plans her escape: whispering to herself, she decides to climb out the back window at midnight. But when she gets there, Maxine is there already! As if she read her mind! Then, because we are mean-spirited and really tired of this game, Maxine’s powers implode the house Carrie-style and everyone dies. The end.

Orphan constructs its disability narratives, but the film did not pluck these narratives out of thin air. The “disabled people are deceivers” meme is everywhere. If we’re not conning Social Security or abusing handicapped parking, we’re busy being either “addicted” to pain medicine or “not really autistic,” and sometimes we’re magically creating an “illusion of competency.” If we can do something today, but not tomorrow, we are lazy. If we see, hear, feel things other cannot–or just don’t take our meds–we are scary.

And people with disabilities, who are constantly told what we “really” are or aren’t, come to believe it. We hesitate to identify ourselves as disabled, because our problems are nothing like “real” disabled people’s. Or we are afraid of getting read as currently able by other disabled people. This way, society has a handy tool to oppress us and divide us at the same time.

[2] Bonus trivia awesomeness: Actor Mario Bosco (NYPD Blue) has panhypopituitarism; here’s an interview with him.