I am finishing my M.A. in Critical Disability Studies, a fortunate position which I hope to give back to many others as The Autism Acceptance Project grows again. There are lots of writing deadlines now and April is on my mind…if you haven’t yet seen this video by Drew Morton Goldsmith, take a look before it begins:

I also am presently reading Chris Hedges The Death of the Liberal Class and reserve my opinions as of yet. However, this is a good video to consider in our Economy of Pity and to question just who is running our charities and for what purpose are we trying to “ameliorate”(or control, or sequester) autistic people from or in society? It’s a bigger question, as well, with regards to where we think autistic people do, or do not belong in our economy/nation state. Think about that when April comes raising money to cure autism. This coming month, let’s write and talk about why this is happening.

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This isn’t going to be one of my longer posts. I was simply driving Adam to school today listening to this song and thinking how fast April is approaching (for those of you who don’t yet know…April is supposed to be Autism Awareness Month). What kind of awareness are we constructing about autism? Are we supporting a charity model that, for hundreds of years, has oppressed people with disabilities? What about NOT making autistic kids heroes in the name of real equality and inclusion? What about just being, or being allowed to be? What about “flying with everyone else” as autistic people? “I don’t want to be a part of the parade,” well, at least not this kind of parade. How can we think of other ways to support autistic folks outside of the charity model that uses various stereotypes of disability – the tragedy, the needy, the sick, the criminally violent, the hero, the supercrip…? How might we, as “advocates,” avoid being kettled by the charity-model?

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It is interesting to see how many versions of “autism acceptance” there are out there. In my classes, filled with people with various disabilities including autism, autistic people say that they want to be accepted. This generally means that people with the autism label want equality of opportunity and equality of well-being (Rioux, 1999), the latter noting that not all individuals are able to live fully indepedent lives, and that the level of their disability should not take away these rights. Here is how The Autism Acceptance Project was acknowledged in a letter to the United Nations for being but one of the organizations important in the history of autism acceptance:

Paula C. Durbin-Westby, who wanted a corrective to the negative images of autism that have been prevalent in many autism “awareness” media pieces and events during April, organized the first Autism Acceptance Day celebration on April 1, 2011. She wrote that it was pro-neurodiversity, pro-supports and services, against “cures” and not about fundraising or other agendas. Autism Acceptance Day and Autism Acceptance Month quickly became popular in the Autistic community as participants spread the word through Facebook and other media.

A growing number of organizations and disability rights advocates now participate in Autism Acceptance Day and Autism Acceptance Month observances, which highlight both social acceptance of Autistic people and the need for appropriate supports to enable full participation in the community. Autistic advocates have taken the lead in bringing about this much-needed cultural shift by working for systems change and by sharing our stories and perspectives, not only during the April events but also throughout the year.

The acceptance movement was built by autistic individuals who have done the activist work in struggling for understanding of an autistic-point-of-view. This has been lacking in recent years. I will argue, however, that charity, parent and scientific “voices” are the predominant ones leading the autism discussion and appropriating the term “autism acceptance.” There is also lots written on the philosophy and semiotics of science which demonstrates how our language creates issues and problems, and these are important areas for critical disability research in the field of autism. I think while everyone wants to be accepted, we have to consider decolonizing the notion.

The one area of on-going concern is the triviality with which people marry any movement with their own “do-good” intentions. We are guided by a current economic framework which encourages colonization of people for profit (this can come in many forms). I’m very concerned how young people are encouraged to do charitable work today. I’m not saying here that there’s not work to be done. Yet walking into a university hall, watching young people have a good time in the name of raising money for a cause they have probably not reserached well should be something that we as a society should think about. What about travel charity where students are encouraged to fly in and out of emerging world countries for a week? It’s a complicated matter and these issues have been taken on by others more aware than I am by third-world issues. What we lack is a critical questioning of charity and “acceptance,” particularly when we go forward and create our own definitions of it. Perhaps because or world is growing smaller and denser by the day, we need serious discussions about how we “help.”

To return to the autism community, for instance, an acceptance campaign movement that focusses on parents as “sufferers” and the “most important” people to talk to in addition to medical professionals, perpetuates the very oppressive, dominant voices that autistic people work so hard to be heard over. I don’t think there are “versions” of acceptance out there. There are critical, life-threatening discussions revolving around The Genome Project and who gets the right to decide and just who is important? Who gets to live? The issues extend far beyond the simple act of doing good when, in fact, we might be doing harm. I don’t think those of us who are not autistic have the right to really say what acceptance is exactly — what it means for the community living with the autism label. To add to the matter, the opinions within that community of autistic people are also varied and need to be sorted out. As parents and professionals our role is to engage with these discussions, but by thinking critically and muting our volume. It’s not that parents do not need support. TAAP used to run parent support groups lead by autstic people. I would encourage other organizations and schools to hire autistic people to do this work. The volume of dominant non-autistic voices leading the movements and charities has been of issue for a long time and we need to understand that we tend to operate under normative perspectives. For me personally, I wake up every day asking myself these questions of how I might be harming when I’m trying to enable and they literally make my stomach clench, and I’m not trying to be self-righteous when I say that. Ah, the perilous business of words.

I was thinking of two books this morning regarding these challenges. First, in thinking of the theme of colonization, I extended the notion to colonizing acceptance, which means to say that people are taking the term and skewing it, possibly, to fit their own normative needs and definitions. I was also thinking of organization as a methodology, if you will, and of Linda Tuhiwai Smith’s Decolonizing Methodologies.

“The research agenda is conceptualized here as constituting a programme and set of approaches that are situated within the decolonization of politics of the indigenous peoples’ movement. The agenda focused strategically on the goal of self-determination of indigenous peoples. Self-determination in a research agenda becomes something more than a political goal. It becomes the goal of social justice which is expressed through and across a wide range of psychological, social, cultural and economic terrains. It necessarily involves the process of transformation, of decolonization, of healing and of mobilization as peoples…indigenous peoples are deeply cynical about the capacity, motives or methodologies of Western research to deliver any benefits to indigenous peoples whom science has long regarded, indeed has classified as being ‘not human.’” (pp.116-118).

Smith’s book is used by disability scholars to consider how this translates to the colonization of movements, research and charities which claim to work “on behalf of” people with autism in the name of normalizing them, not always for the sake of helping them in their own expressed ways of asking to be enabled and supported in society, or even medically assisted. For parents and all reserachers and supporters, this is an excellent read in terms of how we can enable emancipatory practice as facilitators, not as leaders or experts. This is a must read by all people working in the autism field.

I’ve also attached a few links here for those of you interested in the problems with charity and disabiltiy rights: There are many papers and scholarly work done on the perils of the charity model and disability. Here’s but one I found quickly on the Internet. Here’s one from Disabilityplanet.co.uk I would like to extend my future research to discuss the issues of organization within our current economic system, and the challenges we face.

Finally, Lisa Cartwright came to mind and her book Moral Spectatorship. This book is an important read for organizers, allies and supporters to consider our hands in the arena of autism and respresentation, particularly if we build websites, ad campaigns, autism campaigns and reserach labs. This speaks to the need for interdependence and facilitated support and decision making, and how carefully we must tread. I have a much longer reading list, but let’s start here. I find her book important to discuss relational ethics in this field. Here’s a little bit from the introduction to lead you in:

“At the basis of this entire book is a concept of intersubjectivity that Levinas develops, in which the copresence of two hands, belonging to the same body, is extended to the other person. This idea of intersubjectivity as the other person and I as ‘elements of incorporeity’ and as a ‘borrowing of myself from the other’ (Levinas, 1993, 100 alluding to Merleau-Ponty) is demonstrated over and over in Moral Spectatorship as a relationship into which always enters the problematic of ‘hands’ that cannot always reach, feel, and express in ways that are intended and desired by either I or the other. The ‘intropathy of intellectual communication’ theorized by both philosophers is idealized on the basis of a whole body that has the capacity to reach, to touch, to feel in normative ways. This model continually fails in the face of what we might call sensory deficits, or emotional deficits – or, rather, differences in the organization of sensory and emotional pathways within and between subjects…As I will show throughout this book, to borrow oneself from an other in order to have voice in the world has been regarded with suspicion, has been pathologized, because it proposes a model a subjectivity that flies in the face of the liberal autonomous subject. Dependency and nonisomorphic relationships of power are anathema to notions of the autonomous individual.”

Further, “Voice is a central concept throughout this book that is linked to this coproduction of an ‘I.’ The term “voice” has a wide range and mix of meanings. The most important one for this work is the political use of the word “voice” as a figure of speech connoting agency and power…’Coming to voice’ is a figure of speech in a range of political movements connoting the achievement of agency, usually belatedly or through political struggle before which the individual or collective subject who speaks is understood to have been ‘silent’ or ‘invisible’…when Kohut (1984,82) described empathy as a kind of ‘vicarious introspection’ in which one thinks and feels oneself into the inner life of another person, he was referring to the psychoanalyst’s necessary relationship to a client in the process of a cure. This is a fundamentally moral relationship. It is this type of caregiving that structures the relationships of identification and spectatorship discussed…”(introduction).

The idea expressed here is that our engagement/relationship in the name of helping or curing is asymmetrical, not equal. We take the normative stance and decide, semiotically, morally and even legally, what is abnormal and needs our remedy. I feel a great responsibility when I consider Cartwright’s premise. I feel responsible as Adam’s parent to enable him by my quiet facilitation and patience, which is not often accepted in this world that sees capacity and competence in terms of independence, or that is impatient for quick words and answers. It is our interdependence that offers arrays of possibility, if autistic “voice” and “agency” is respected and not forced to normalcy when it cannot be forced. In terms of “autism acceptance” being appropriated these days where it’s meaning seems to be erased or essentialized, we have to consider the normative paradigms and the motives behind our design, knowingly or unknowingly. As I write here, with words of course, as a parent and organizer, we have to put ourselves under the lens, not autistic people. We are still at this stage.

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“Hermes has taken over the world, our technical world exists only through the all-encompassing confusion of hubbub, you will not find anything left on the earth – stone, furrow or small insect – that is not covered by the diluvian din of hullabaloo.” (From Michael Serres, The Five Senses: A Philosophy of Mingled Bodies p.10.).

This is a thought I had about internet and identity today. I appreciate that members brought the iteration of the other project to our attention. The work of TAAProject stands on its own. TAAProject will continue with its important work and support others in the name of helping autistic people to contribute to society as autistic people. If you wish to sign up for our newsletter, and are not already on our mailing list, please got to our website and sign up there.

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CBC News – The National – In Depth & Analysis – Positively Autistic.

And Here is the TAAP promotional video created in 2006:

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Today, I was informed that the name of the organization founded by myself but built with many autistic people, both verbal and non verbal, was taken by the creator at this site here. Ms. Zalzal, the creator of this pretty site is a web designer and built it as part of her senior exhibition project for Troy University’s Design Technology Innovation Program. This site was created in October 2012. The only problem is, the name belongs to the original Autism Acceptance Project, founded in 2005.

After trying a few portals to contact the creator, Ms. Jennifer Zalzal, I heard from her this evening. Honestly, many of us were not happy with her site. At the moment I cannot link you to the home page, which I have printed and screen-shotted (it’s no longer on her site), which reads:

“Through my research I have come across a similar campaign with the same name as the one I am branding/promoting. The Autism Acceptance Project (TAAP). Their mission statement works to promote acceptance of and accommodations for autistic people in society. The Autism Acceptance Project will bring forth a different and positive view about autism to the public in order to create tolerance and acceptance in teh community and to empower parents and autistic people.”

She then goes on to say,

“I think this is a wonderful statement and cause, but I would like to specify how my campaign differs to confirm my motive. My acceptance campaign is devoted to promote the acceptance and accommodations for people and parents suffering with the spectrum, similar in some ways to TAAP. The research and information I provide on my website is fully based on personal interviews with medical professionals and most importantly parents of autistic children. I want to give the viewers of my site a look at autism from behind closed doors and through the voices of those who know them best….I want to educate people on the truth of the matter.”

Today in an email from Ms. Zalzal to me, she stated that when she did her research she “did not come across your site.” I have been in email correspondence and am trying to explain to Ms. Zalzal why this is so problematic, and in the meantime, hope to support her in her efforts to accept autism…that is, before I realized this discrepancy. Her site is ableist in nature, so we find it difficult to support her premise. Let her do so on her own platform and identity, not ours!

As a critical disability scholar, I have to also be critical of our own agenda. When we wrote “positive” views about autism, this was in 2005. No one was saying anything positive about autism at the time and autistic adults had started something called The Autistic Adult Picture Project in order to project the image of real autistic people and living in society. Jim Sinclair, Frank Klein, and so many others wrote seminal pieces towards autistic equality and inclusion. Dr. Dinah Murray, autistic herself, created a video You Tube Channel called PosAutive which accepted submissions from autistic people of positive contributions in order to upstage the miserable portrayals of autistic people that were rampant in parent autism campaigns as well as by autism societies and Autism Speaks. Let me be clear as well that although I’m a non autistic parent who founded TAAP, I took a lot of critiques myself from autistic folks when I had the idea to start it. Critique is essential. It helps us to learn and grow. My commitment towards my son’s inclusion and acceptance in society reminds me everyday to look deeply at issues and my own internal bias’. I think it’s also important to send this reminder that many people were working assiduously (and still do today) to counter the portrayals that were, and are, seen by autistic people as oppressive and a threat to substantive equality or equality of opportunity and well-being. These ends are not served when we speak of parent’s suffering, which then leads to the discourse of burden. These movements in the early 2000′s, along with other disability rights activism, was an important shift to the view about autism acceptance, and in a minute, you’ll see how Ms. Zalzal threatens to undercut it. And this folks, is how “innocently” discrimination is materialized. Surely every experience is complex, and critical disability discourse enables this conversation, but let me reiterate that positive portrayals at the time were a necessary counter-speak to the misery-speak so predominant at the time. A few years later, many more people speak to inclusion and acceptance, although we haven’t yet attained it as a legal right in society.

I’ve also critiqued the way notions of acceptance are interpreted, and as we see on Ms. Zalzal’s version, it’s not quite acceptance when the “truth” as she puts it, comes from “parents and medical professionals.” Truth is a really sticky thing. Hang a sticky strip of truth and you’ll catch a lot of flies and they’ll just die. What is truth? Whose truth? It’s not a static concept! The other fundamental problem with her presentation of “autism acceptance” is that it excludes autistic people. Apparently, according Ms. Zalzal’s preamble, parent-truth is more important truth, and autistic truth is not necessarily that important. In a world that has worked so hard for disability rights and inclusion through various Human Rights Acts and international policy instruments, excluding autistic “voices,” is a violation of these fundamental rights. But hey, people trample on them all the time, right? Does it make it right to know something exists and pretend it’s not there?

When something very problematic comes up, it’s important for us to talk about it. I’ve asked her to please change her brand and return the TAAP identity to us as so many autistic people worked on this not to mention the years it took! Ironically, taking identity so easily is a fitting metaphor to autistic people having their identity taken from them by people who are not autistic. This to me speaks volumes about her other site/campaign.

Also, last year our website www.taaproject.com was hacked (not in connection to this) so this was another blow to hear that someone just saw our name and said “hey I’m just going to take it and make my own campaign because I think I can do this all by myself.” Advocates who can endure the criticism of their good intentions have the potential to be better advocates. Many people have ideas and they think they can run their own campaigns. When they press up against resistance from the community they claim to represent, it’s really important for them to listen. As one of my profs said to the class, “take it in the chin!” The problem is, Ms. Zalzal’s campaign rests on nothing save for her own ideas. Excluding voices does not make for a campaign. If people wish to join campaigns or make them, there are some fundmental rules:

1. Don’t take other people’s intellectual property and admit your’e doing it on your homepage and then write an email claiming you didn’t see us in your research;
2. Get involved with the community you are claiming acceptance for. Don’t speak on their behalf;
3. Recognize the problems of representing the medical model and parent model in a movement that has struggled with years of oppression by these very models.

From a critical disability standpoint, although I do believe all voices are important, Ms. Zalzal’s campaign is heavily weighted on hearing from the parents who “suffer” and hearing from medical professionals (in the name of “truth” about autism) who we need of course, but whose history with disabled people are complicated and paternalistic. Please see my blog post yesterday. I care about parents. I really care about autistic people as I have a wonderful autistic son in my life. I live with the complexities every day and I have chosen to live with them carefully and reflexively. I have not chosen the easy path. And believe me, I’ve taken it in the chin, and I’m quite certain I’ll have to again. I still support Ms. Zalzal in her growing process and to join the larger autism acceptance movement through various organizations and rights activists. I hope we can all encourage it.

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Am I Disabled Too?

Questioning My Identity As A Parent to an Autistic Child

Estée Klar

Against the background of a new “behaviour,” as it would be described by clinical behaviourists – Adam’s grunting – my writing about identity is agitated. How do I identify with disability and stigma as a parent with a child with the autism label? Do I matter? Does the act of defining an identity matter, or does it reinforce normative discourses about disability and identity in the act of defining one? In this dialogue with my father, I use Judith Butler’s “Giving An Account of Oneself” as my lens as she discusses identity against Hegel and Adriana Cavarero as well as notions around the social, discriminative and post-structuralist models of disability.

“We begin with a response, a question that answers to a noise, and we do it in the dark – do without exactly knowing, making do with speaking. Who’s there or here, and who’s gone?” (Thomas Keenan)

Huh huh…huh huh. Adam has started grunting. He hasn’t done it before. Usually Adam’s movements and occasional sounds don’t get to me. Yet this is constant grunting that agitates me. It punctuates my discomfort with the question, am I disabled too? Huh huh…huh huh. It seems as if he cannot stop it and I don’t have the silence I want to write this paper about whether I can also claim disability because of Adam through the lens of Judith Butler’s Giving An Account of Oneself as she discusses Hegel and Cavarero. It’s hard to concentrate. Huh huh…huh huh. I want Adam to stop. Huh huh…huh huh. I feel so awful for feeling this way. Huh huh. I decide to call my father to refocus.

“Hi, Dad.”

“Hi,” he says in a rushed almost what do you want voice. I often think he’s waiting to hear what I need from him or what’s wrong since I needed him a lot when Adam’s dad left. He’s listened to the weight of my thoughts, my worry for Adam, my questions about the meaning of all this.

“Adam’s grunting is getting louder again. It’s really hard to work when I hear him doing that.”

“It’ll be fine. Look, when we saw him last week, it quieted down. You know as well as I that things like this with Adam come and go.”

“I know, I know. But this one’s tougher. This one is vocal and loud. I’m having a visceral response. It’s like he’s setting off an alarm in me; as if his grunting makes Adam so urgently present, but it’s me who feels urgency – he seems happy enough. It’s like there’s an agitated presence but I am the one bringing it to the situation. Does this make sense?”

“I’m trying to follow you.”

“It makes me question everything in the sense of the social construction of the autism label against this loud noise that emanates from Adam’s chest, his body. I mean is this about me or is this about Adam?”

“What do you mean?”

“I’m trying to ask the question about whether, because of Adam’s autism, I can claim disability too?” I could hear my father sigh.

“That’s a tough one.”

“Adam’s grunting is demanding my full attention. Every-other second when I hear it, I feel that I have to run in and save him. It’s exhausting.”

“You don’t need to run in and help him.”

“I’ve been getting better at that. In the meantime I started writing this paper and I decided to use the grunting because it’s so present and real right now. It’s challenging my ideas and conflicts with Adam’s embodied manifestations, if I may call it that, and I am interested in this idea of agitation.”

“Ha, ha. There you go!” He replied in his jolly good fashion, as if he was proud of my ingenuity. His approval encouraged me to continue.

“Can I talk about what I am thinking about?”

“Sure,” he said quickly.

“My question is problematic. On the one hand, I want to write about times like this, when it feels hard to help Adam, or even when I feel stressed or need help. I also want to write about the times when I feel isolated or stigmatized without blaming and creating more hardship for him. I am really hesitant and I seem to resist writing about this. The problem is, if I go and complain how difficult it is for me at times, then these are the arguments that get turned around to legitimize that autistic people are a burden on their parents, and on society. It gives justification for cures, remedies, and eugenics arguments.”

“Yep,” said my father waiting for more. I heard the sound of a clicking keyboard on the other end of the receiver.

“Then there’s the complication of claiming disability where I do not have a visible one. I can claim my own disability without attaching it to autism these days with my injuries. As for autism, can I claim that disability because of the barriers I face in the name of helping Adam get access to education and programs? Also, my own identity is malleable and it changes with time and experience and as Adam may change over time. So if I talk about myself as disabled because of autism, I could be blaming autism as the barrier for inclusion rather than the social constructions built to exclude Adam. Then there is another issue.”

“Yes?”

“Our experiences are not similar. Maybe he can share his experiences with other people with the autism label, and maybe he can’t. Are our bodies individual or collective or both? I can’t necessarily walk in Adam’s shoes and I can’t claim the embodied autistic experience the way he can. You see, there are a lot of questions about identity and experience.”

“So why is this important? What do you want?” He always had a habit of asking just the right question. “Do you want recognition?” I wanted to find a way to argue away from the possibility that I might need any.

“Okay. I’m thinking.” I heard my father chuckle in the background muffling the phone and speaking to my mother. He then uncovered the phone.

“Go on.”

“Maybe I want people to understand how hard this is for me to discuss, you know? I mean, is this important to discuss? I keep coming to the question what about me?””

“Yeah, so? What about you?” my father asked sharply, as if I sounded selfish.

“I knew you’d say that. Let me try and explain before you judge me, please? For instance, have I been writing myself out of the picture when I do so about my son’s rights, and when I’ve said that autistic people must speak for themselves in this autism rights movement? Communication is difficult for Adam and there’s no question that I have to help him, which sort of speaks to the interdependence issue about accommodation and autism. So, do I matter in this discussion as his parent? Somewhere in there is the politically correct space of claiming my identity as an autistic ally, but it leaves out some of the challenges I face as a non-autistic single parent to an autistic boy that doesn’t always fit with a political movement. You see, I’ve been writing this blog for years, and I tend to sound strong and positive all the time. Yet I think I’ve made it clear that I don’t think, in an ableist sense, that everyone has to have some sort of ability, or be strong, to be treated as equal citizens. There are some people who can’t contribute to the economy in the same ways, or at all. I don’t think human value and equal rights should be based on that. You know as well as I that I’ve been told I’m in denial by people who want to stay rooted in the why me, this autism is terrible and must be eradicated discourse, and I feel awkward discussing Adam’s private struggles in public. I think of the ethics involved in that and I don’t want to define our identity simply by our struggles, but they are definitely a part of it and I don’t wish to omit it, either. Part of me feels that what I write is performative; a version of my life with Adam. I present this to the world because of discrimination and because proclaiming struggle can threaten Adam’s existence. Still, I’m trying to decide if this is an act of editing or half-truth-telling. I mean, I share the same challenges and feelings as many other parents do.” I mumble getting frustrated, listening to Adam push out breathy grunts emanating from his chest downstairs. “I don’t know.”

“Yes, yes, but what does writing about this do for you?”

“I’m trying to answer the question, for now, if claiming my child’s disability as my own is fair to him and to other disabled people where I do not share the same somatic identity and experience. Although I experience stigma to some degree because of Adam’s autism label and as his caregiver, does that permit me to claim disability too?”

“I’m not sure.”

“Let me give you one example that might tell you about how I can feel stigmatized because this is the oppressive experience of being disabled. If I go out, people ask me if I have children. I have a big choice to make with this simple question. I have to decide whether to tell people I just have a child or if I should mention that I have an autistic child.”

“Yes, but what does it matter?” My father’s t’s were sharp. “It depends on who you are talking to.”

“Perhaps, but let me try to see if I have a point. The dialogue can go either of two ways. If I choose the first option where I do not feel that the investment in telling my story is going to be worth it, the conversation around do you have children? goes pretty much like this: Someone will ask, How old is your son? I’ll say, Ten. He’ll be eleven soon. Then they’ll say something like, Oh that’s a fun age; turning into a pre-teen. All the boys want to… whatever, just fill in the blank. They might even ask me what sports teams Adam is on and then I can get a little stuck there. Or, I can end the conversation. So here’s the strange thing: when I do that I feel like a lie to myself because so much of my time, thought and energy is spent with these issues and caring for Adam. I am then only half (or less) of my Self in this performative utterance. In that moment, I feel a sense of loss because I can’t share my story. I feel I have cut off Adam from me as I would cut off my own arm. I’ve come to name this my amputated identity. Goffman said…”

“Who’s Goffman?” interrupted my father.

“Erving Goffman wrote about stigma.”

“Go on.”

“He wrote about a notion called Dyadic Cooperation where ‘stigma may lead to an adaptation to lead an individual to avoid interactions with others who are viewed as poor partners for social exchange.’ So in my example, I am experiencing a loss of identity as a result from the possible expense it might cost me, or Adam, for sharing it. There are so many examples of the stigma I feel even when I go out with Adam and how he is scrutinized if people know his label. Or if he makes noises, of course, people will look at him. Remember when Adam didn’t want that doctor to touch his ears so the doctor said that’s Adam’s going to be violent when he becomes a teenager because he’s autistic – just because Adam wouldn’t let him touch his ears!”

“That doctor should be reported,” my father said angrily.

“Yes, but that goes on every day in our world. I feel the pain in my gut as much as I think Adam would if he was old enough to understand the weight of that comment. Now let me talk about all of this literature I’m reading on how parents give up their jobs or promotions for their disabled children, and how important it is to support parents. It’s not that I don’t think parents should be supported; it’s just that I question how they are supported to cure autism and cope rather than questioning these things. Parents aren’t encouraged to question the system that oppresses our children as much as us. We are expected to remediate our children to normalcy and society doesn’t have a legal responsibility for inclusion and equality of opportunity and well-being; only to support us to remediate our children before they can become mainstreamed. Financially and emotionally, this can be disabling, not to mention leaving parents feeling desperate and hopeless when they discover that autism isn’t curable, and I’m not trying to make an argument for a cure here. We are charged with solving this ‘problem,’ which is our children, which then leads to our feelings of isolation. This marginalization of our children, and all disabled people, affects our lives too. I guess I’m trying to say that there are lots of issues with care and the expectation on families as containers of disability; families as embodied silos in the politics of care. Aren’t we all accountable? It’s hard to explain this. I’d rather just be accepted, to have a life without so many questions about autism as our identity. I’m not saying I want to hide it, either.”

“I think society is measured by how it treats its most vulnerable citizens and you’re right, it operates on this individualist concept. But regarding the social situation, it’s not a lie if you don’t tell people Adam is autistic. It just depends on who you talk to. Not everyone deserves an explanation and I think it depends on context.”

“Yes, but…”

“So what’s your point? Do you want pity?” said my father sharply.

“No. Maybe I just want to be understood, if this is recognition, but it’s not quite. I’m referring to recognition as understanding and empathy, and it’s not just for me – I want it for Adam too. Think of diagnostic labeling, if you can accept this metaphor, like a wound or gash on the body, a stigmata. I am trying to make sense of it, as do many autistic adults who have to make sense of all the discrimination, or even a new diagnosis, I think. This is like someone trying to make sense of cancer, or after a serious disabling accident, where disability is thrust upon a person suddenly. We write, paint or try to express our experience in order to make it coherent. Yet doesn’t everyone want the short answer to who are you? I guess I don’t feel entirely comfortable in claiming disability although I can identify with stigma. It’s hard to answer the question of who am I? in one sentence. Here’s another interesting point, though. If I use the social or discriminatory model of disability which states that social barriers to equality of opportunity and well-being constitutes disability I could, prima facie, claim it. If I can’t get access to certain services or a way of life that others are entitled to as Adam’s parent because I have to take care of him, which does I admit, intersect with my role as a single-mother, then that can be perceived as disabling. Yet the social model does not take into account the complexities of physical or embodied impairment. It can’t explain that the impairments that most of us will face over the course of our lives may be physically limiting or will require medical treatment. The social model is still part of a normative discourse because it implies that if all society needs to do is to remove the social barriers, then disability won’t exist. Therefore, one could argue that it sets out to ameliorate disability and disability cannot, or should not always be fixed for the sake of fixing, and the removal of social barriers alone will not rid society of disability. Lennard Davis writes that even the notion of identity is a normative concept. He argues that distinguishing from other identity groups can limit their own projects. So identity isn’t stable. ”

“That, I like,” said my father. “Look, you are working to help Adam’s future. There are ignorant people out there and there always will be. You just keep doing what you’re doing. Adam’s a sweet little guy. He’s our guy.” My dad’s voice softened.

“When you talk in that tone about Adam it makes me feel that this isn’t something just about my identity as Adam’s parent or as a single-parent or as a woman, even though I’m not discrediting these aspects of my identity, either. I’m considering this in a collective sense because identity is always shifting and seems so unreliable. Listen to this:

‘The you comes before the we, before the plural you and before the they. Symptomatically, the ‘you’ is a term that is not at home in the modern and contemporary developments of ethics and politics. The ‘you’ is ignored by individualistic doctrines, which are too preoccupied with praising the rights of the I, and the ‘you’ is masked by a Kantian form of ethics that is only capable of staging an I that addresses itself as a familiar ‘you.’ Neither does the ‘you’ find a home in the schools of thought to which individualism is opposed – these schools reveal themselves for the most part to be affected by a moralistic vice, which, in order to avoid falling into the decadence of the I, avoids the contiguity of the you, and privileges the collective, plural pronouns. Indeed, many revolutionary movements (which range from traditional communism to the feminism of sisterhood) seem to share a curious linguistic code based on the intrinsic morality of pronouns. The we is always positive, the plural you is a possible ally, the they has the face of an antagonist and the I is unseemly, and the you is, of course, superfluous.”’

“That’s fantastic, who wrote that?” my father said enthusiastically.

“Her name is Adriana Cavarero. I found it in a book by Judith Butler On Giving An Account of Oneself. I find it interesting how she writes about the politics of pronouns. So in essence she’s saying in our age, the we is in fashion. I think a lot of people might take issue with that in a neo-liberal capitalist society that highly values the I. So the question isn’t just about me, it’s what about we? But we have to be careful here because even collective identity is malleable and we have to think about what Lennard Davis said. Yet it denotes social responsibility and asks us to question the discrimination of the disabled body as singular/abnormal entity of them separate from the normative us. When I start thinking in those terms when Adam is grunting or having body spasms, I see how my agitation creates the question of what’s wrong? I am defining his embodiment aberrently, against my reaction to it, while he is happily grunting to himself. My question about my identity with Adam’s gets blurred, and sadly, I think Adam’s identity is constructed largely on his physical behaviours-as-aberrant. But this is not to say I don’t have these difficult moments. I really struggle with this!”

“Of course you do. It’s natural.”

“Butler also writes, ‘For Hegel, the desire to be, the desire to persist in one’s own being …is fulfilled only through the desire to be recognized. But if recognition works to capture or arrest desire, then what has happened to the desire to be and to persisting one’s own being? Spinoza marks for us the desire to live, to persist, upon which any theory of recognition operates may seek to fix and capture us, they run the risk of arresting desire, and of putting an end to life.’ So if I have this right, Butler is suggesting that my desire, that is the act of trying to define myself as a parent who shares disability with my son, is inadequate if not potentially life-threatening, like Davis implies. ‘As a result, it is important for ethical philosophy to consider that any theory of recognition will have to give an account of the desire for recognition, remember that desire sets the limits and the conditions for the operation of recognition itself.’ I’m not comfortable in setting those limits precisely because they are limiting.

“Go on, you’re on to something.”

“Cavarero also says we are ‘exposed to one another’s vulnerability and singularity and that our political situation consists in learning how to handle and honour this constant exposure;’ that we are not closed in on ourselves, or solipsistic. She goes on to say, ‘I exist in an important sense for you.’ I think I’ve taken this position. Adam is present in everything I write and don’t write and the lines are always shifting. I am also tied to the political environment which problematizes the notion of autism, of course. Perhaps I can’t resist the importance of social movements. In a way, one could say that the issues we discuss around disability asks us to think collectively from which all society may benefit. I’ve talked about engaging with Adam in a relational dialectic and then I discovered that Hanna Arendt presented the notion of a relational politics whereby ‘the exposure and vulnerability of the other makes a primary ethical claim on me.’ I can’t rid myself of this notion that I cannot identify myself in isolation, or maybe at all. Maybe all I can do is keep writing.”

“There you go. How’s Adam’s grunting now?”

“It seems to have quieted.”

“Remember, your attempt to find only one answer to your question isn’t possible. It can end up being meaningless.”

“You’re referring to essentialism?”

“Exactly. Remember to keep it open ended.”

“My relationship with Adam, or my argument?”

“Both.”

—–

Bibliography

Beresford,B., Rabiee P., Sloper, P. (2007). Outcomes for Parents with Disabled Children: Research Findings from the Social Policy Unit. (2007-03). UK: The University of York.

Butler, Judith. (2005). On Giving An Account of Oneself. New York: Fordham University Press.

Davis. Lennard J. (2002). The End of Identity Politics and The Beginning of Dismodernism. Bending Over Backwards: Disability and Dismodernism, and Other Difficult Positions. New York: New York University Press.

Goffman, Erving. (1963). Stigma: Notes on the Management of Identity. New York: Simon and Schuster Inc.

Miller, A.V. (1977) Hegel’s Phenomenology of Spirit. New York: Oxford University Press.

Radley, Alan. (2002). Portrayals of Suffering: On Looking Away, Looking At, and the Comprehension of Illness Experience. Body & Society. Vol. 8 (3): 1-23. Sage Publications.

Wendell, Susan. (2006) Toward A Feminist Theory of Disability. Lennard Davis ed. The Disability Studies Reader.2nd edition. New York: Routledge.

Westerholm, R. Radak, L.,Keys C.B.,Henry, D.B. (2006). Stigma. Gary Albrecht, General Editor. The Encyclopedia of Disability. London: Sage Publications.

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I have an autistic son who is bright and who requires many accommodations in order to fulfill his Canadian right to an education. At my university, the concept of independence and work overrides the need some accommodations that are required for many disabled individuals. Drawing on my graduate student experience, where we share ideas in class discourse, where we write in dialogue with ideas expressed in other articles, it becomes immediately apparent that none of our work is truly original. Ideas are collaborative. I help my colleagues figure out things and they help me. I’ve never been happier.

The Canadian Human Rights Commission invokes the duty to accommodate concept:

The duty to accommodate refers to the obligation of an employer or service provider to take measures to eliminate disadvantages to employees, prospective employees or clients that result from a rule, practice or physical barrier that has or may have an adverse impact on individuals or groups protected under the Canadian Human Rights Act or identified as a designated group under the Employment Equity Act. In employment, the duty to accommodate means the employer must implement whatever measures necessary to allow its employees to work to the best of their ability. In the provision of services, the provider must implement whatever measures necessary to allow clients to access its services. Unions are also obligated to facilitate the accommodation of the needs of their members by not impeding the reasonable efforts of the employer to accommodate an employee. The duty to accommodate recognizes that true equality means respecting people’s different needs. Needs that must be accommodated could be related to a person’s gender, age, disability, family or marital status, ethnic or cultural origin, religion or any of the other human attributes identified in the two federal acts.

(From Canadian Human Rights Commission website).

It takes work to express how a human aide worker is a necessary accommodation for many people, and for the purposes of this blog, autistic people. What can an aide worker enable, in this case higher education? S/he can help take notes, rearrange assignments in tandem with a professor to enable the student to create work and respond to it, assist walking to and from various locations (I am thinking of a few people I know who are scholars and who require such assistance), organize deadlines and assist with a confusing array of university deadlines and procedures. I myself need lots of help with this. Yet, there is a perpetuating myth that I am an independent scholar; that somehow I exist in a vacuum and am able to navigate all on my own. I can tell you that this is surely not the case and thank goodness it is not. In my Critical Disability Studies classrooms, I share and gain knowledge and insight from people who are blind, autistic and who are deaf. We have note-takers in our classrooms, guide dogs, wheelchairs and ASL interpreters. As I consider the latter, it seems reasonable, in the duty to accommodate notion and the “reasonable accommodation” notion in the Ontario Human Rights Code, that human aide workers also be permitted in classrooms.

Yet, Ashif Jaffer was not permitted to stay at York University (see Jaffer v. York). He is now at Ryerson. At no point in time, reports his mother, did she ever imagine Ashif unable to attend university. I have always felt the same about my son Adam. I do not think that human development is linear as a result of having him in my life and meeting all the people I’ve met. I myself am not a linear learner and I don’t do well with age-imposed deadlines (eg.; one must achieve X by age Y). I am attending grad school later in life. Are we not the result of a post-industrial era? Must we leave school and get a job at eighteen? Of course not. We know that this has changed.

I urge you to watch the BBC report of Ashif Jaffer and his work at Ryerson here. In so watching, I hope you spend the time to think about, and perhaps if you have the time, to enter into a dialogue here about what “reasonable accommodation” means to you? Would you share your thoughts with me and with others in order to help? What are your visions for your “severely autistic” or what-ever label you might have, child? I also do not wish to suggest that college or university is the holy grail of human achievement. This would of course perpetuate the notion that all people must achieve (in the same fashion) it to be valued. This would contradict the achievements made by the Canadian Charter of Rights and Freedoms and the Human Rights Commission and substantive equity. We do not wish to lose the gains we try to make by suggesting that all people must be the same. Rather, what might we achieve in our quest for such accommodations (think also of our public school system) on the different and equal premise. For this, also see the Supreme Court of Canada’s recent decision Moore v. British Columbia. I look forward to sharing more with you, and you with me, on our work to get people with autism the education and inclusion they so deserve. I shall be writing much more on this topic and… thanks for sharing!

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Do you need autism services? Here’s a thought on the NRA and their blaming (and stigmatizing) of people with “mental illness” (the term in and of itself is problematic). I strongly urge you (and applaud) Paul Applebaum’s response (he is from Columbia U). A psychiartrist himself, he notes that statistically, people with mental health issues are not inclined to violence. Yet, society seeks someone or something to blame and the NRA is leading the way.

On with my thought. If you have registered your child in autism services (think Adam Lanzer as I continue to write and that violence just a few weeks ago was blamed on autism) your child is on the state roster. If groups like the NRA succeed in having outside “experts,” who are never experts really, report to the state who is at risk of enacting violence, lots of bad things can happen to your child or adult family member with autism, as well as you as a parent. This is the complex situation with needing support for enablement versus how government support can turn against us.

Now on to more stigma and Margaret Wente of the Globe & Mail. First, why does she still have a job? On the cover of Globe T.O today is Chris Spence, the director of the Toronto District Board of Education who plagarized his speech. He was fired. Margaret Wente, also found out for plagarism, still has her opinion column job at The Globe. How do other hard-working journalists feel about her cheating? I for one have had enough of her naivete. She has written one too many comments on autism today in her foolish column on The Awful Truth About Being Single, mentioning that the only people who don’t mind being alone are autistic and asexual people. Another Wente blunder, not to mention a discriminatory remark that can further isolate people with autism who want to be social but find doing so with typical individuals often difficult. I think it’s time Ms. Wente get an education on disability rights and meets a lot of autistic people before she continues to write about things she doesn’t know anything about.

To end my little post today is a quote from the Court in the Granovsky decision:

“Exclusion and margainalization are generally not created by the invidiual with disabilities but are created by the economic and social environment and unfortunately, by the state itself.” (From Ena Chadha’s “The Social Phenomena of Handicapping” in Elizabeth Sheey’s Adding Feminism to the Law: The Contributions to Justice, Claire L’Heureux Dube, Toronto: Irwin Law, 2004)

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I am finding myself listening to CBC Radio One every morning. I would like to applaud the CBC for dealing with one of Canada’s most pressing human rights issues – that is the stigma of people categorized with “mental illness,” “autism,” and “people with disabilities” as the most devalued of our citizens. I hope for continued coverage on legal, policy, attitudinal and inclusion issues and listening to the perspectives of the disabled in our community, and allies coming from a critical disability perspective.

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Listening to CBC Radio 2 this morning is a special report on autism and work. Interviewed is Thorkhil Sonne, Chairman of Special People Foundation. He has built an I.T. company, Specilaisterne that I wrote about a few years ago which hires autistic people. Citing some of the skills that belong to some autistic people – attention to detail, pattern-recognition skills and honesty – Sonne makes a great case for why he only hires autistic people.

It is no wonder that we must think about creating jobs for autistic people. In reality, we live in a labour market economy where making a living is a necessity and independence is highly valued. Yet, there could be some future challenges that we need to address when creating such opportunities lest we harken back to the Poor Laws and work houses for the disabled that have lead to sheltered workshops that still exist in Canada today where a “worker,” is paid thirty cents an hour. We are talking true sweatshops that are in operation right now in Canada. Sonne seeks to better that but there are still issues that we as a community must continue to discuss. That we live in a market-economy in the first place will challenge the equity notions that I posit.

First off, let us not reify autism and its skills. Autistic people have a variety of skills that are indeed useful in market economy as Sonne mentions. My concern however, is that the general population will now view ALL autistic peoples being the same. All autistic people are “love computers, are good at detail and are honest.” Such overgeneralizations can serve to further discriminate against individuals with autism.While applaud these needed efforts to provide equal pay for equal work, this does not preclude further discussions about our socially-constructed ideas regarding autism and people.

Many good folks are working hard to provide opportunities for autistc individuals. We must support these efforts while at the same time, bring these issues that continue to this day, to light. Autistic individuals are at risk of abuse in the workplace. Notions about perserverence where “typical people” don’t have the same attention, risks overworking the autistic individual (I’m thinking of Chinese workers here and crazy hours, choking on their own “production”). Perhaps we have to discuss that many autistic people tend to be sequestered and over-prompted from the time they are children and learn to comply with ABA therapy. Compliance may extend to the workplace where an employer may expect a certain way of working and attention and the autistic individual may not, by virtue of challenged social interaction skills, know how to negotiate. Perhaps this is one area teachers can look towards – self-empowerment and esteem building opportunities for children as we do for the typical population.

We must discuss supported decision-making and other aides and guardians to attend to the needs and desires of people with autism. If we are not willing to finance these supports and allow aide workers in the workplace or at schools, colleges and universities, we are further disabling environments for people with autism. We have to continue working for equity. While we must keep moving forward, we have to ensure safe-guards are in place and that autistic people are not all expected to be I.T. workers. What oher kinds of work might individuals in our community want? What is “contribution to society?” There are many ways, shapes and forms of contribution that must be considered, valued and supported.

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I’ve started my next semester of my Master’s studies, now taking law and cultural studies at the same time, hoping to engage the law through an arts-based approach. Sitting in class yesterday discussing various issues around pain and physiotherapy, the issue of Occupational Therapy also entered the discussion. It started as a discussion regarding a study conducted by a person with CP about a person with CP who took a superior position over her subject and seemed to take a neo-liberal stance – the subject was not doing their exercises to mitigate/manage their pain and the implication of blame took the perspective of an obligation to become a citizen by managing oneself (arguably to become more normalized). The hidden bias was that we must look after our health for the purposes of becoming productive citizens of the state, and we are less valuable if we do not do so. There are elegant counter-arguments, namely Sunny Taylor’s The Right Not to Work, which I would encourage you to read if you have the time.

I will continue to write on something I picked up from Carol Tavris and included in my essay The Mismeasure of Autism - that autistic citizens are different and equal. Marcia Rioux also utilizes this notion in speaking of the law for people with disabilities:

“If equality depends on sameness or on being similarly situated, then the fact of difference warrants unequal treatment. A concept of equality that requires that likes be treated alike and unlikes be treated differently presumes the impartial enforcement of legal and social rights. It makes no difference to attempt to clarify what makes people equal in particular circumstances or for particular purposes. There is no prescriptive element to the principle on which governments might base their decisions about which people are to be accorded unequal treatment. The principle simply establishes the generally accepted rule of law that procedural fairness must be applied for law to be legitimate. Neutrality in the application of the law and the absence of different treatment are presumed to result in equality. For example, people who cannot fill out forms are deined the right to vote, while others, who can read and write, are afforded that right. The law is equally applied to all those who cannot provide the information; therefore the fact that it has a differential impact on those with intellectual disabilities is insignificant. So are extraneous causes for such lack of ability; neither the systemic, legal exclusion of those with intellectual disabilties from the regular education system nor the means of eliciting the information, which is in a mode of communication less accessible to them than to others, are taken into account in determining justified and unjustified distinctions.” (Rioux, 1994).

Rioux contends that the law assumes here that justice is safeguarded on this premise of sameness as it is appropriated to the notion of equality. We still tend to utilize the arguments that all humans are the “same,” even with their disabilities, despite the complexities and different needs among, for the purposes of this blog, autistic individuals. Which leads me to quickly elaborate on my point made in my previous posts that autism is a social construction. It is if we consider that the diagnositc criteria is created by teams of people and the notions and conceptions evolve with changes in society and over time. Arguments can be made for and against these constructions. Yet, the communities that have been created as a result of the construction have been helpful for many people. It can often help to relate to others. This collectivism, however, does not assume that all autistic people share the exact same experiences or share the same feelings about their lives, or about autism itself. What we can value is the many and varied experiences that people may share with us. This can avoide a possible damaging reification and over-generalization about autism, indviduals, experience and needs. It does not consider the complex cultural, socio-economic, gender-based and other intersections that also effect individual experience.

Let me go back to the beginning of my thoughts about the CP (Cerebral Palsy) article. It was the idea of various therapies that struck me and an autistic person’s right to deny treatment, and to deny being touched. I think back to when Adam was much younger – when some therapists thought to rough and tumble him would normalize him, or that touching him for therapeutic reasons was simply okay. Occupational therapists do this all the time. I never thought twice about it. I always thought that OT was helpful for Adam, and I do think it was helpful for his motor-planning and sensory needs. It was the manner and the respect of therapists towards Adam’s dignity that I continue to seek out for him. Over time, I came to ask these questions: Is he being respected? Do people attempt to teach him on the premise of “being less than competent” than a so-called “normal”population? Do those who engage with him respect him in all ways or feel he must always be taught to be normal? Do we play on his terms as well as asking him to play on ours? Is the relationship reciprocal? Complicating matters regarding the autistic child is the matter of how we treat and regard children in general. Yet we all know that the fully verbal child has the ability to say no (even if not listened to) and the autistic child may say no in their behaviour, or that there may be ways of judging “no” if we are patient and willing to pick up the many subtle communications outside of typical langauge systems.

The focus of my work continues along the different and equal premise in all forms and continues to explore emanciaptory research and participation of non-verbal autistic individuals, often deemed the least valuable and able in our society, therefore leading to continued normalization treatments, exclusion, and sadly, abuse.

“Setting the equality standard as an outcome measure removes the need for each disadvantaged group to demonstrate discrimination. It replaces the capacity to compete as the basis for political obligation. It takes into account the social reality of the disabled and non-disabled as well as their biological differences. And it thus makes the achievement of social justice dependent on a recognition of those differences that must be accommodated to achieve equality of well-being.” (Rioux, 1994).

Now with The Autism Genome Project seeking ways to isolate and identify the autistic person in vitro, and considering the date of Rioux’s article (1994), I wonder how much longer it will take for the different and equal premise to take hold in law so that autistic people can be considered valued Canadian citizens.

References:

Gaskin, C., Anderson, M., Morric, T (2012) Physical Activity in the Life of a Woman with Cerebral Palsy: Physiotherapy, Social Exclusion, Competence and Intimacy. Disability & Society 27:2 (March), 205-218.

Rioux, Marcia H. (1994) Towards a Concept of Equality of Well-Being: Overcoming the Social and Legal Construction of Inequality, 7:1 Canadian J.L. & Jur. 127.

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I wrote earlier that I just returned from Oaxaca, Mexico. Adam wasn’t with me this year. His dad and I take him on holiday every-other year… the “schedule” as I’ve come to think of it.

I got a new ukelele for Festivus from my musical beau (we literally play music together). When I picked up Adam from school today, we were reunited since he went with his father in late December. I was so excited to see him, my stomach in knots. I couldn’t contain myself, smothering his soft face with kisses that he tolerated for a while. As we drove home, a huge smile came over his face. We returned home, made dinner, played downstairs – back to the regular routine. I pulled out my new uke and played a new tune I’m learning and Adam danced for me. I can’t wait for bedtime – a book, a snuggle, a “hunker down beneath the covers,” and more smothering kisses goodnight. They don’t call it (s)Mother for nothing.

I hope this makes you smile. Happy New Year to you all!

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I was in Oaxaca, Mexico the past couple of weeks. I apologize for not getting to the blog to publish some of the comments that came up while I was away. I didn’t have great internet access. I managed to rest, read a lot (Susan Sontag, Derrida, Barthes…and ended my journal with Oliver Sack’s own Oaxaca Journal.). Before I left for vacation, I did a bit of writing on Sacks, and am working on the essay for publication.

The last day in Oaxaca, we wondered the markets and mingled with locals. I would have loved to have stayed longer as I wanted to engage with one man in particular begging for money with a severe disability. I wanted to talk and engage, not just hand out money and walk away. I knew our langauge differences would have been challenging. We looked at each other I stopped and said “Ola,” and he did so in return. I would have lingered but my Spanish is terrible. Then, the Saturday crowd, market smells and heat carried us away.

When I woke up in Toronto this morning I thought of how our autism “charities” need to engage in ethical discussions about how we relate to people with disabilities; how we need to do it in real time and in our discussions on websites. Autism charities are not experts in autism (I’m talking more of the ones lead by non autistic people. We don’t have a solid theory about what autism is, per se. I contend that it is a social construction and while we have an obligation to assist many people in a variety of ways). We should not espouse answers for autistic people without them. We have a collective responsibility to engage and to discuss the ethical implications of the Autism Genome Project, about Inclusion, rights, social justice, “treatment” and education. Autism and disability charities can engage with greater ethical discussions with the disability organizations that engage in these issues. We need autism organizations to interact with them.

I wake to snow in my own city, and to more work.

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I have to tell you that I predicted the autism label would be used to describe the perpetrator Adam Lanza and the horrific shootings at Sandy Hook Elementary School. Before I proceed, let me please contribute my heart-felt condolences to everyone who has suffered by this, and who have lost their dear loved ones.

As I read through my Facebook page this evening, autistic people are frightened for themselves. When I hear of a crime like this, I hold my breath just waiting for someone to spill out the A-word. When I go to the doctor now, he says that when my son will become an adolescent he will become violent. A doctor?! This, my dear readers, is the level of ignorance most families experience. When we conflate violence with a type of person (race or gender) or disability is not only unethical – it’s dangerous to the welfare of autistic people.

We must work to differentiate “mental illness” with Aspergers or autism. Even that term is riddled with blame and stigma. I guess I have to say here that any person is capable of violence. You can be neurotypical and be violent. You can be anything or anyone and be violent. Violence is not a blanket trait of autism.

Our human history is laden with the criminalization and demonization of people with disabilities. When society fears something – be it environmental changes, our fears of what a fast-paced technological society is doing to humanity or now this (the increase of violence as characterizing the perpetrator as “isolated”) – we point the finger at autistic people. Autism is a human construction. It is a label made by people and its definitions keep changing over time. I will soon put a couple of essays here on this blog to show how autism as a construction has evolved in the twentieth century, and how we have had autistic people in our history (other authors have also written much more about this).

From the blog Left Brain/Right Brain, I copied this comment from the CBS story illustrating the prejudice that abounds. I urge you to read this blog post for more information on how autistic people are being stereotyped and targeted:

“most people with Asperger’s can function normally in society”, this is a false statement! They cannot function normally! That is why they give the condition a name, as to differentiate them from the “normal” and accepted social behavioral. We have a large and growing population of people with these behavioral conditions that will hinder our public and social progress. I am afraid that we will continue to see these types of violent episodes, these conditions prevent the individual from using “reflective thought”, actions are sudden and instinctual, almost animal like. If you would like know more, go read a BOOK! don’t look it up on the internet, think for your self!

Again, please go to that blog and help to stand up against unethical reporting and mischaracterization of autistic people as violent people (CNN had been reporting that Lanza had Aspergers and then retracted it). I have many autistic friends and a loving child with the autism label. There are many more issues to discuss regarding gun control, the role of the media. Autistic people seem to be the moving target for everything. Please, let’s stop the shooting.

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