Event ID: 1422113
Event Started: 9/15/2009 11:00:00 PM
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Please stand by for realtime captions. 
>> Hi, Pat. It is Tracy. I was going to make e-mail's for the link to go to for the captioning. We will need that so we want to make sure is available for people who might be joining in. 
>> Hi, Tracy. I continue that e-mail now. 
>> Okay, that would be fine. 
>> We will wait a couple of more minutes before we start. 
>> All right, just let me know. 
>> Can everyone who has come into the room see my slide on the screen? 
>> The people in the room won't see it unless they cut on administration [Speaker Faint/Unclear]. They will pick up what ever happens when they come in the room. 
>> I will keep them in mind. Is it coming up on the screen now? 
>> Tracy, the captioning information its on its way to you. 
>> Thank you. 
>> Do you think we should get started or wait a few more? 
>> We need to wait until Tracy gets the captioning information which she had almost about now. 
>> We will get started. Will you turn on the recorder? How well I know when it is on? 
>> The Captioner can feel free to start the captioning. 
>> Anyone requiring caption please log onto www.captionedtext.com and that is in the chat. The entry code is 14 to 2113. I think we are all set to begin. 
>> Pat, are you recording and can we start? 
>> The entry code is 142-2113. 
>> Welcome to the first of the series of the [Audio Faint/Low Speaker] today we have. 
>> Presenting. [Audio Faint/Low Speaker] tonight, and will be presenting puzzling Alliance says. Go ahead, and. 
>> Thanks, Christine. [Audio Faint/Low Speaker] 
>> Just a reminder, if people can speak a little slower than they might ordinarily, it gives the Captioner the opportunity to transcribed. Thanks so much. 
>> Please let me know if I am speaking too quickly. I will try to keep that in mind. Before I start, I want to say hello to everyone and thank you for coming to the first of what hopefully will be a great series of disability study stocks. I am excited to be a part of this disability studies series. Thanks for having me. I hope it goes smoothly. It is my first webinars a let me know if I am speaking to quickly or it there is anything I can be doing to make this more acceptable. As Christine said, I am Anne McGuire and my presentation this seasoning - the CD is puzzling alliances:  Advocacy work and the politics of representing Autism. I have the title up on the screen along with my name, university and e-mail address which is amcguire@oise.utoronto.ca. 
>> Without further, ado, I will start. In the past decade, North America has seen a rise in the number being identified and that debt - and diagnosed as autistic. Autism organizations have taken on a much more prominent role in North American society and have been influential in shaping public understanding of Autism. I would like to focus on every date depictions of autism, images and text produced and circulated by Autism advocacy groups as powerful and influential representations' of autism. Representations' engaged in governing, social understanding and are engaged in the making and the meaning of Autism today. More specifically, I would like to consider the cultural significance of a recent change in house before is being represented by advocacy groups. Advocacy organizations are moving away from representing Autism as a disability to access an accommodation and representing it as a disease. It must be at minimum treated and that is cured. My presentation asks whether the social, political and ethical consequences of conceding autism as a biomedical problem as a disease that some people have and as such, something that can or ought to be eradicated. By way at a higher our call network of our relations, those engaged in the doing in advocacy work are always at risk in producing a press the conceptions about Autism. In relation to contemporary representations' that Autism, it is my hope this were can offer a stake to reflective the challenge in strength in the work of non disabled advocates and other potential allies in the disabilities community. 
>> Before I move on, I just wanted to briefly Scituate my research and myself. My work is being radically located in the work of disabilities studies. Instead of understanding disability as a medical condition in individual bodies, the social model space disabilities in the physical and social environment and into subjective relations. 
>> I could put a quota on the screen, by Eli Clare. Disability, not defined by our bodies but rather by the material and social conditions of ableism, not by the need to use a wheelchair, but rather by the stairs that have no accompanying ramp or elevator. This is slide number two. I consider disabilities as a social model and Follette disability scholars, particularly my colleagues and disability studies at the University of Toronto whose work considers disability and need a fix or a trance historical concept but as a nexus of embodied relations. I begin with the understanding that this ability is not simply in some bodies and not in others, while particular bottles experience disability more intimately and particular bodies are more vulnerable to material and equities, disability is always being made in the social spaces between the bodies. It is being made in our culture and how we think that it. I also want to begin the understanding that disability is fluid and relations. It marks the body in an ambiguous ways. It appears and disappears, it is hidden as we move to a social spaces as refined ourself in different political and historical moments. All of us are making sense of this thing called Autism, it is shifting [Audio Faint/Low Speaker]. I contend that Autism must be realized as a state. A space of power relations, a space that provides the terrain for encounters across our differences. More personally, my relationship to disability developed as a settling of a disabled brother and I have been involved with several advocacy organizations. Autism advocacy organizations in North America are chiefly comprised of non autistic individuals. Often family members are charged with advocating for and supporting autistic people. My experience working in organizations have left me with questions about the position not autistic advocates [Audio Faint/Low Speaker]. This paper examined have power and privilege marks a non disabled advocate even when our intentions is to do a good to support disabled people to raise awareness. 
>> Just to give you a little context of my project, during the early stages of my Ph.D., I started collecting data from publicly available information by Autism advocacy groups. My data and depictions of autism and images displayed on advocacy organization website, information circulated in pursers, appeals for funds and awareness campaigns. As I collected my day that I quickly began to notice several trends in how autism and autistic difference was being represented. I'm going to now turn to a closer examination of two trends that I noticed in my work. The first being Autism as a disease in needed a killer and Autism as inherently threatening. I will consider the social and political effects and risks of representing Autism in this way. 
>> I'm going to turn that to an examination of the content - representing the autistic body of the and healthy body. My first example I will put on the screen. I have a snapshot that I have taken at a pamphlet that is geared toward team captains for an Autism speaks fund-raiser. Autism speaks is the largest and arguably most influential in North America today. It claims to provide guidelines, how to solicit donations and support. The text on the screen is taken from the pamphlet read these guidelines are designed to help to properly use walk now for Autism speaks logos. And a couple of the puzzle pieces as well. The puzzle piece is the international I can't speak for awareness. Below the local the pamphlet includes some information about Autism including the statement, more children will be diagnosed with Autism this year and with AIDS, diabetes and cancer combined. Autism, and other life-threatening or illness or disease is grouped with a life-threatening illness like AIDS, a diabetes and cancer. While I am tempted to set the state Autism is not life-threatening, it is not a disease or illness and I think this is an important distinction to make. I also think it is important to consider the impressive work happening on both sides of the comparisons. The dominant understanding of the and healthy body is that it is inherently tragic body. [Audio Faint/Low Speaker] in this way, what is understood to be unhealthy is a life that has already been threatened. A life associated with death and as such a life that must be avoided. A life possibly conceive of as not quite all right. With this oversimplified reading of the UN help the body, the autism speaks fund-raiser is drawing upon as the groups together autism with bodies that are recognized as unhealthy two bodies with people or AIDS and cancer. Autism speaks informed its potential exporters that autistic body is a body that must be pitied and requires intervention and needs to be saved. [Audio Faint/Low Speaker] this tactic is using one oppressed identity and treats the UN help the body as a way of marginalizing and other identity [Audio Faint/Low Speaker]. In the scientific racism's and the homosexual body, summers suggests the history of scientific racism read the rationalized body as a pathological body. For example, rationalized bodies are historical a and physically inferior, feeble mind it and so on. [Speaker Faint/Unclear] Somerville rights, the structures and methodologies that drug dominant ideology is a phrase also feel the pursuit of scientific knowledge against the homosexual body. Some of those traces of ongoing history of scientific racism's and scientific heterosexism for example colonial studies compared in and of the projects and more contemporary genetic mapping. She argues that it is the statics and tactics that are working to organize both rationalized bodies and bodies as always an already unhealthy and needed intervention. These plays a critical role [Audio Faint/Low Speaker] ongoing histories of violence had and continue to target bodies that are rendered unlivable. What goes unmentioned in those articles is there is another body involved in these ongoing histories of scientific racism and heterosexism in order for pathology and the process of the call - back and effective way of refraining life as not quite all right. There must first be an understanding of the and healthy life that is not valuable and viable and a threat to the Social and Liberal body of normalcy. It is this understanding that the UN healthy body [Audio Faint/Low Speaker]
>> These same tactics that befall a cessation are employed in the autism speaks fund-raising uphill and I want to make sure [Speaker Faint/Unclear] common-sense assumptions about the in perfect value of the healthy and unhealthy life work to produce the autistic body is a body in need of help, a body in need of intervention, saving. As I mentioned before, autism is not life-threatening. We do have some sense of what is meant by the autism speaks statement. The life that is being threatened is the life of normalcy which in turn explained in advocacy work as the only viable life. I would like to turn to another example to glean the work that is accomplished by representing autism as a threat. In December 2007, New York University launched an advocacy campaign which was dubbed the and why you get some campaign and raising awareness about the predominant and effective so-called childhood psychiatric disorders. Autism was included among the disabilities. 
>> I have up on the screen which is a photo of a billboard in introducing the campaign. The quota it depicts a large billboard as the kind you might find on the side of Highway displaying a large ransom note. Each of the letters appear to be cut out from a different source and the words are pasted together to get the message. 12 million kids are held hostage by a psychiatric disorder. The low and it shows there website. 
>> I now have an on the slide a poster that was part of this campaign. It appears like a large copy piece of paper with words like a typewriter. It reads, we have your son, we will make sure he will not be able to take care of himself or interact socially as long as he lives. This is the only beginning. Signed, autism. Don't let a psychiatric disorder take a child. The Child study [Audio Faint/Low Speaker]. As I argued earlier, processes [Speaker Faint/Unclear] in this poster is normalcy that appears helpless and adaptable. Autism appears as the violence inflicted. The hon. body to normalcy communicates just the opposite. Autism becomes personified as that of Dr. That is holding an innocent by the hostage. This poster does the work of separating and keep it separate Autism personified as an abductor from an otherwise not autistic person. The response to this kind of story seems obvious, eliminate Autism and neutralize the threat. As the poster says, don't let a psychiatric disorder take a child. Speaking at by near rating autism as a threat to be a social and literally nobody of normalcy, the poster is an effective call to arms against Autism. Significantly this poster appeared in a broader social content that uses more as a persistent metaphor for how to orient and respond to the perceived threat of autism. For example, following pressure from autism advocate in 2006, U.S. Congress passed a law 10916 which was the combating of his act and was dubbed in the U.S. media, the war on autism. 
>> I have a bunch of different clips from newspaper articles and transcripts illustrating the idea on the war autism. [Speaker Faint/Unclear] we need a war on Autism, not a war and chanted vaccines. Progress is slow on the war against autism. 
>> Just to briefly illustrate this further, I have on the screen two images of a recent fund-raising event, a collaborate it event between generations rescue and the World wrestling entertainment and they did a collaboration, it was called the autism smack down. The two images are clips of advertising's. [Audio Faint/Low Speaker] next is a picture of the Jenny McCarthy and her son. The level that is a picture of a wrestler in and ask. The last image I had was a clip from the event with Jenny McCarthy yelling into a WWE microphone. In these images it seems clear [Audio Faint/Low Speaker]. This tangle of biomedicine and morality produces normal say as something that must be and autism as a threat to be neutralized, normalized, stopped and eliminated. In the midst of this war on autism, [Speaker Faint/Unclear] is an autistic at the kit that reminds us, autism is a something that a person has or shall that a person is trapped inside. There is no normal child hidden behind the autism. Autism is a way of being. It is pervasive, it covers every experience, sensation, thought and encounter. It is not possible to separate the autism from the person and if it were possible, the person you'd have left without be the person you started with. This is important to take a moment to consider it. Autism is a way of being. [Audio Faint/Low Speaker]. 
>> The work of that because these only recognize the successful in doing the work of saving or recovering the bodies normalcy, but eliminating its perceived threat, autism. The role of the good advocate is constrained as someone who must be positioned against Autism. Someone waging a war against Autism working to combat it will eliminate it. The promise of his advocacy is the promise that Autism might not always be autism, but the body of autism might be modified, rehabilitated through tinted behavior modification therapy and the expected body of not autism might be approximated. 
>> 
>> The autistic life does not conform to what normalcy looks like. The autistic body is made more vulnerable to violence. This vulnerability is highlighted in the next nine to examples. The documentary film autism every day is produced by [Speaker Faint/Unclear]. North America's largest advocacy. They interviewed family members with octet - autistic people. [Audio Faint/Low Speaker] I sat in the car for about 50 minutes and actually contemplated putting my daughter in the car and driving off the George Washington bridge. It's only because of the fact that I have another child that I probably didn't do it. On the rubric of raising awareness on autism, and autistic life that does not make progress or actively worked on is depicted as not quite a life. A life that is it really lost, a life that becomes exposed to the possibility of Finance. This version of advocacy reverberates in a statement made by [Speaker Faint/Unclear] following her 2006 arrest of her three year-old autistic daughter. She told police she thought any killing Katie she might finally succeed in fixing her. She stated I lucked Katie very much, but I hated the autism so much. I hate it when it was doing her. I just wanted autism out of my life. When asked by the defense attorney, as he suffocated your daughter, who did you think you are killing? She replied, Autism. Both the statements from the mother and the video, it becomes crucial to know how advocacy and particular kinds of stories our complicity [Audio Faint/Low Speaker] Autism is something we need to be against. Set the to be fought, hated and eliminated. Autism and non autism must remain vigilant and how common misconceptions produce a reasoning, but make it possible to move to violence. I am highlighting these examples, we begin to engage with advocacy work at the political project. A way of imagining advocacy of the wise and as an opportunity to read into the story advocacy is telling and tell it differently. It is vital to reorient Autism and advocacy and the ties that bind the two together. Autism, not a pathology or threat and not as a body that can simply be identified and treated. Advocacy, not as a biomedical intervention engage with the cost of recovering the bottle of pharmacy. Advocacy as a political power fall task, a task in need of reflection. Today, I am suggesting we reiterate the state between Autism and advocacy that states the question of politics and alliances and a state of realizing, teaching and the state we have to return to. That is the end of my talk. 
>> Thank you so much. That was wonderful. I wish I could do a virtual appliance. - applause. 
>> I'm going to open the floor to questions. I know we have a small group tonight. 
>> I was wondering if you came across any alternate images and direct responses to some of the trends be noticed? I know you had the one quote, but I wonder if you have anything that directs the response to that organization? 
>> The [Speaker Faint/Unclear] community has been vocal in challenging a lot of these representations' particularly the ransom note campaign was through petitioning and actually taken down in New York city. We were all very happy to see. It is an enormous amount of pork happening and Research happening which is amazing to see and activist work as well. In Canada, I am very excited to see that and they use a lot of that in my work. I am interested in looking at how nine disabled people and not autistic people can be challenging this as well. That is my interest. 
>> It is too bad that activists have to spend their time [Audio Faint/Low Speaker]. It seems they have a different approach. 
>> I think the difference of looking at the family dynamic is something that I do in my research. Because there is an intimate proximity between the parents of an autistic child, we are literally living with autism and there is some sort of intimate access and the kind of power that comes along with that, for example as someone who is a sister, who does not identify as artistic, but identifies autism as it were in my life. There is an EC blip that can happen with over identifying and taking control of the images. It can be done in damaging ways. [Audio Faint/Low Speaker]. 
>> Does anybody else have questions? 
>> Dale has a comment. Great presentation I really enjoyed it. [Audio Faint/Low Speaker]. Did you notice a gender bias in your research? [Audio Faint/Low Speaker]? 
>> I did and it is not uncommon that the majority of representations' of autism have images of children, particularly children and it male children. It comes from and lot of biomedical research that states the predominance of autism is four times more likely to be diagnosed as a male. I think the organizations had picked up on that. It is another piece of evidence that demonstrates the value and the valor according to the biomedical perspective and to gets left out. I am not sure anybody would want to be represented in these instances. It is something to consider. Thanks for throwing that out of little bit. 
>> I have met some families with autistic children in Thunder Bay which is where I am. They often come to Thunder Bay because there is some service in Thunder Bay that can help them. Canada wide, which happen to know for it there are the most services for families with autistic children so that they can receive as normal a life, education, etc., as possible? 
>> Certainly I think the larger cities have more options. In Toronto for example, again, my research is critical of the kinds of educational, they're cute Beatle - therapeutic approaches that are being advocated and provided by advocacy organizations. I think it is critical that families have have helped and supported within their communities, the kinds of support that I am seeing in the dominant Autism awareness advocacy movement. They are in face them and sometimes violent behavioral therapies. It is not necessarily what I would advocate based on the testimonies of all autistic adults, I think the better option would be to have a variety of different options that parents have at their disposal. I know in Toronto there is an organization called it ought his acceptance project and the run group therapy and support that is run by autistic adults who have intimate connections and knowledge and experience of living with autism. Who better to be ready to support groups? That is an interesting thing that has come up. I think the bigger cities have more access to that. 
>> Had you seen a change in the way the media depicts Autism as opposed to some of the ways that you showed in presentations? 
>> I think what I highlighted in the presentations are reflective as dominant kinds of understandings. I have seen more progressive, I know the CDC had a spot my a few months ago that was talking to us about getting various alternative [Speaker Faint/Unclear]. I think the reason why I focused on these images and examples and not more progressive instances is just the sheer dominance. They are everywhere. I cannot open a newspaper without reading something. They need to be addressed head-on. 
>> I see a question on the screen. With autism specter comedy find a difference in reaction with individuals [Audio Faint/Low Speaker]. Just to clarify, I am wondering, a difference in reaction [Audio Faint/Low Speaker]. I do think within the autism spectrum, as workers is that the top because the underlying hope of many parents is that they can be as normal as possible and productive. Asbergers has been talked about being high functioning Autism. In my own family, I have a cousin who was recently diagnosed with Autism. His parents are very hopeful that he could progress to Asbergers. I think there is a danger in that hierarchy because obviously there different ways of be productive and expressing intelligence and different ways of being in the world into Kuwait the hierarchies within a disability category. Asbergers was one of the posters included in the NYU grants and no campaign. It is not in vulnerable to these kinds of images. 
>> I agree with you but disability included autism is not something that needs to be cured or eradicated but often struggle with the problem at the social macho [Audio Faint/Low Speaker]. That is a good question. We talk a lot in my own community at disability studies and scholars and activists. I think the Social motto is - it doesn't go as far as many of us would like to. It oversimplifies the realities of the impairment. It is certainly not - the difficulties with autism or the struggles for the pain. All of these very difficult things to deal with and live with and experience, both by the autistic person and by the family member. There is no clear-cut solution. Just to accept your child or except yourself or whatever. There is so much there that is messy and tangled. I feel the necessities of my work, there needs to be another way of conceiving my role as an ally. I need another story of how I can do that. I think as advocates and as allies, that conversation needs to be started and the needs to be an alternative to set the rest igniting autism as a problem in need of a cure. [Audio Faint/Low Speaker]. 
>> [Audio Faint/Low Speaker] a relentless pressure that pose some people. Whose problem is it? The problem of the person with the disability [Audio Faint/Low Speaker] [Audio Faint/Low Speaker]I wonder if you have a queue up that the behavioral intervention program available for young children with autism and your thoughts about that program? 
>> First off, you are right. I like how to characterize the unrelenting pressure. I think he captured have it is. [Speaker Faint/Unclear]. Because this is such a family matter for me and it is diagnosed as a childhood [Audio Faint/Low Speaker] behavioral therapies for the treatment of choice in Canada. There is the pressure to have a normal child. There is the pressure to make a decision that would be best for a child. They can get the best education or have the happiest life or what ever a parents' goals are for their child. B-2s the treatments based on what is best for their child. I think that is often what motivates parents to go to behavioral therapy. The people I live with and speak with on a regular basis how upsetting behavioral therapy has been [Audio Faint/Low Speaker]. This kind of education are therapy, I think it is important to ask the question of who is serving. Who is a been a fitting? To make eye contact for example, autistic people don't like to make eye contact. [Audio Faint/Low Speaker] that can be very traumatic and a violent and who is serving? Can there be a more social understanding at this. I personally don't agree with or support behavioral therapy. 
>> What about the help that was given to one autistic teenager, one teenager who has autism who is able to, she is able to type on the computer. A lot of work has been done with her and I am wondering if any of that work or any of the information that she writes is filtering into people who have the choice of what their piece to use and giving another light to what children and teenagers with autism can do. 
>> The person that comes to me is Amanda [Speaker Faint/Unclear]. She has been very vocal about autism rights and advocacy. She communicates by computer. Her kind of comment is that help or support needs to be done in collaboration with disabled. It just can't be given. It is not something the able-bodied gives the disabled. It has to be a conversation, because it is delivered to children, children between the ages of three and six typically. I think that kind of behavior community needs to listen to more people who are very vocal about their experience is a behavioral therapy. I know we are running out of time, an useful example for me, the same person who has developed the behavior of therapy is [Speaker Faint/Unclear]. He works in California and was working back in the '60s and '70s I project that was called the [Speaker Faint/Unclear] boys project. [Audio Faint/Low Speaker]. They had behavioral therapy to mask penalize these boys. That program is not socially acceptable anymore. I think those behavior both their pays really need to be thought about and not to say [Audio Faint/Low Speaker]. 
>> We could probably take one more comment or question. Anybody else? 
>> As you know, we are CWDO in Ontario. Is there any role that you can see that we can use to best help families, to best help portray - I don't know another word to use, the correct way to be able to resist the families who have members who are autistic? 
>> Like I was saying before, because it is the perspective, it is so dominant. It is a daunting task when people come to me for advice, I often find it a daunting task because of the sheer dominance of the biomedical perspective. As an organization, my hope is that there are alternatives. [Speaker Faint/Unclear] for example who I mentioned before, she does amazing writing and you to the videos. [Audio Faint/Low Speaker] she does a lot of advocacy work for the autism acceptance project in Toronto. There are so many people out there [Audio Faint/Low Speaker]. I think that would be the place to start for me, to start imagining a different possibility of the then trying to be associated with Autism. In terms of their piece, at school I am working close with teaches a communities. I don't advocate behavioral therapy. 
>> I know we are drawing to a close, I was as wondering if you would be good enough to flip to the last slighted so people can see the URL to do an evaluation. It should be one more slide. 
>> This might be my presentation, I put my own presentation in. I am sorry. I can pull up the other one if people are willing to wait a couple of minutes. What did you call it? 
>> I uploaded the document and it starts with today's date which should be toward the top of a list. It is called puzzling Autism. I am pulling it up right now. 
>> Can people see this? 
>> Yes, and the evaluation link is visible. If participants could place go to the website on the slide. If you could complete the evaluation form, that would be great. We use this to determine what webinars might be of interest. I have enjoyed your presentation. I know Christine is going to say some words to wrap up, but I have enjoyed the caliber of this presentation. You have raised the bar for all of us and I appreciate. Thank you very much. 
>> I think we will conclude our first webinar. You did a wonderful job. Your work is always inspiring. I look forward to seeing everyone at the next webinar which is [Speaker Faint/Unclear] 
>> Thank you everyone for coming out tonight. Thank you. 
>> Thanks, that was great everyone. Tracy, would you let us know when it is posted online for public viewing? 
>> Pat has one working on that aspect of it. We are behind in our archiving. Pat, it is the Oeneus in that regard? 
>> Is there is in some of that will be going up this week as a matter of fact. We know some of the ones that have been booked for that have been written to us so we would definitely make sure that this one and others get up immediately. 
>> Thank you. Thank you to the Captioner. We are finished with this session. [Event Concluded]