Personal Interest and Academic Reserach

Filed Under (Activism, Adam, Advocacy, Autism and Intelligence, Communication, Community, Computing/iPad, Critical Disability Studies, Living, Politics, Writing) by Estee on 28-05-2013

The end of the day of Adam healing from the croup and us both watching repeats of Wretches & Jabberers for my thesis. Adam can’t help laughing at the scenes of Naoki jumping up and down to Rimsky-Korsakov’s Flight of the Bumblebee – flapping his hands, moving the window blind from side-to-side, opening and closing doors, and running up and down the stairs to then, finally settling at his computer utterly focused and well, communicative. I can tell Adam’s feeling better as he giggles and then afterwards decided to do some puckered-lip kissing practice on my cheek.

Watching these clips from YouTube are also very important for anyone wanting to discuss it. I would imagine we’re all concerned about Tracy’s living situation and want that to change. As I write an academic paper about a subject that I am personally invested in, I also feel a responsibility to my son’s community. I am also selfish and grateful at the same time – selfish in not wanting Adam or anyone like him to have to be in Tracy’s position as well as inordinately grateful to both Tracy and Larry and their supporters for going out into the world to do this work. We are all motivated by personal circumstances which enables our emapthy. I am hoping to articulate my personal interests and vulnerabilities in my own academic writing, where one is otherwise supposed to be, in a traditional empiricist sense, emotionally removed and (supposedly) objective. Others have discussed this as well – Behar in The Vulnerable Observer, and Douglas Biklen in Autism and the Myth of the Person Alone and recently this new paper by Andrew Bennet in this issue of Disability Studies Quarterly discusses the possibilities of our mutual vulnerabilities – as researcher and research participants.

I really appreciate this clip that comes in addition to the film, as I wanted to know more about Mr. Thresher’s situation. I don’t live in Vermont, but I do think that the issue should be a politically active one here in Ontario as our autism societies take up adult autism issues. How can we enable autistic people to advocate on their own behalf for their own needs? How can we support them? This film should be shown at every chance in discussing positive living situations outside of institutions and segregated shelters.

I also work hard to get Adam to type and use AAC and seek people to support Adam. It is frighteningly slow for people to believe that Adam can understand, read, and have the ability to type and both of us need more support that is difficult to find here in Ontario. I’ve been writing this blog since 2005 and been telling people he could read words, numbers and book spines since he was 11 months old. I find it really frustrating if some verbal behaviourists teach him the word “cat” over and over again so he can say it correctly when he’s been reading it since before he could walk. The autism curriculum must change to include education and academics in its programs to be truly supportive of the autistic person’s right to education.

In terms of typing, his school will support him visually, and I think because of the time I’ve spent typing with Adam with support, that he is able to type to some extent at school without it. Yet I think with better support he could do better there and I’m trying to teach people myself. If you are a parent, you know this is a labour. However, I can’t understand any longer, as Adam and I have also been informally tested (yes, that’s the doubt people have about autistic people) that Adam’s communication is his own, and that with the right kinds of supports and teaching, he could communicate better by typing. This is seen in the same way deaf sign language was once denied to deaf people in favour of lip reading and speaking. Yet, communication is also a right. To deny a person with a communication disability such support and access will become an issue for law and policy, but our important work for now as activists and educators is to keep showing the work of autistic self-advocates, such as Larry and Tracy, as well as autistic people who are prolific bloggers and writers, and to keep breaking down barriers within our own homes, communities and schools, one person at a time.

My last thoughts for the evening: Isn’t it better to support an autistic person in their autonomy rather than to fret about what level of dependence they are going to have on their families or in group homes? In other words, isn’t the support of autonomy and our mutual interdependence a much more empowering prospect for us all? (I have to add, I am not intentionally favouring those who are able or have the desire to type or use AAC. There are those who are not able to use it and we have to consider the people missing from this dialogue).

Part of my work wonders why such doubt exists regarding Adam and why we’ve had to struggle with so much resistance with educators and clinicians. I do think that Adam, like other autistic people, will dispel the doubts. But I also wonder if we have to ask ourselves what or why we doubt, exactly? What do we fear if people with communication disabilities can communicate via other means? Is this the right question?

A New Kind of Autism Lobby: A Proposal

Filed Under (Ableism, Acceptance, Activism, Advocacy, autism, Autism and Intelligence, Autism and Learning, Charity, Communication, Community, Critical Disability Studies, Language, Organizations/Events, Politics, The Autism Acceptance Project) by Estee on 09-05-2013

I’m writing my thesis and am hankering to blog – so many things on my mind with the recent Ontario budget proposal, the ever-so teensy weensy allowance for an individual on ODSP to take home a couple hundred bucks a month and the way we may have to reconsider how we advocate for support as autistic families. Can I say at least it wasn’t cut altogether as was the original threat? Also in the budget is a brief mention of autism services and a reduction of wait-list times for those in urgent need. I’d like here to write a post for all of us to reconsider what all autistic people and families need, and how we have to lobby.

I’m writing my thesis on autism advocacy, in particular, among non-verbal populations. There are wonderful contributions to this already out there to be cited. Also, The Autism Acceptance Project (TAAP) is in meetings, where the autistic population is setting the agenda and I am a facilitator/organizer (also we hope to announce an upcoming event soon). I’ve thought long and hard about the work of autistic folks and re-evaluate my role as a partner and ally to Adam and others. The most fundamental concern I have that will effect all autistic people and their families is autistic rights – to be viewed as valuable citizens; this means that the “spectrum” concept of functioning does not preclude rights and that all people are equal and valuable. This is addressed in substantive equality, where differential treatment must be sought for many to achieve equality (Rioux, 1999). In other words, many disabled people require support and accommodation to participate in their chosen ways in society. What is particularly worrisome to me as a parent of an autistic child, is the lack of access and lack of education. Yet, I also see our traditional education system crumbling, which to me, provides a new opportunity to finally give access to education for everyone. This post proposes not only services to alleviate families, but many opportunities for autistic people of all ages.

Here, I see potential for those who are also ABA lobbyists (I will specifically mention this group since ABA is cited in all government literature now and as I predicted in 2005, it would be the only service available to autistics) to change their drumbeat from tragedy to substantive rights. I’ve cited recently the Jefferey Moore case in British Columbia (2012) wherein it was stated that the notion of remediation risked adverse effect discrimination. I would argue the same – that when we believe we have to remediate an autistic individual, or any individual with a learning disability, before allowing them access to school, or to an education, then this is a fundamental oppression and devaluation. ABA schools can consider integrating academics into their methods as well as any other therapies out there, thus supporting, enabling, respecting (instead of normalizing) autistic being. That Augmentative Assistive Communication (AAC) and other supported communication techniques is not considered a right to communication should be an outrage to us all. At one time, the Deaf community was not allowed to sign! Now, the same thing is happening to the non-verbal autism community. The most fundamental right is the right to access communication. Yet, teachers also have to learn how to support an autistic person to use them, while also considering the autistic learning style (there is research out there you can find easily on this). There are enough autistic independent typists as well as teaching methods available. I could go on — video monitors, white boards, computers – these are fundamental for autistic learning and we all have a wonderful opportunity to learn to support autistic individuals! My question to educators and supporters, how can we change the way we do things to support autistic rights?

Back to the the right to education – music, art, math, science, geography – all of these are fundamental to an individual’s quality of life. Adam is autistic and has a curious mind. When he is introduced to new topics, they may be hard at first if they are taught in traditional ways, but as he learns he becomes more interested, proud and excited; doors open and he wants to learn more! Should an autistic person in a Verbal Behaviour or ABA program be denied access to academic material when they have read the same word since they were a toddler? Or, can this new material be integrated within a program? How creative can we be?How can autistic children be allowed access to their own interests and material and how can teachers facilitate their continued learning of what interests them? These are also fundamental rights – the right to choose and to follow one’s own path. While it has been cited numerous times that everyone – disabled and not – can benefit from an individualized approach to education – it as also been deemed difficult in the traditional system where teachers have been the gatekeepers of knowledge.

I was turned on recently to Sal Kahn, who has created a series of educational videos on YouTube which are utilized by some classrooms. Some teachers are reconsidering their role as facilitators instead of lecturers at the front of the classroom, monitoring a child’s work on the computer using Kahn’s lessons, and then stepping in to help when needed. Online learning can be very effective for autistic individuals and must be considered if we are to enable a future of autistic participation and contribution. This provides fantastic opportunities where video learning and technology – such as Mindcraft – are enablers – autistic people can build in this program, make art and new worlds, and this can be a monitored learning program (and many do which attests to innate autistic intelligence and ability). Online friendships and self-advocacy, as reported by many non-verbal autistic individuals, have also enabled better socialization skills in virtual and real time. How can rethink such spaces that are already at our disposal? How can we allow for autistic work to take place also on autistic terms?

We have to reconsider these spaces from traditional ones to creative ones where all people can participate. At the moment, I can say that while I work to have Adam included, he is mostly segregated – goes to school, goes to a few programs with an aide worker which thankfully enables him to participate. Within the system at our disposal, we work with Adam’s team to provide him the best we can and we are all learning. But this is what I ask of all Canadian society – at least give Adam, and others, the opportunity to participate. To-date, he is not allowed. Even trying to get Adam into certain schools is fraught with traditional testing – not allowing him frequent pre-visits or adapting work in formats that he can best respond to. All I can say is, the world is losing out too for Adam can give back so much.

As I consider my daily life as Adam’s mother, and how my heart wrenches for him – I at least want him to have choices. This drives my work towards a more inclusive future (which may require specialized education in the real sense of education for his future – not sequestering, normalizing and presuming incompetence) for our children and for families to support this, this also traverses to the arena of advocacy with such questions as: What of my role as his parent and an “autism rights activist?” How can I, as a non-autistic person who is used to traditional hierarchical boards, committees and organization, become familiar with an alternative way of organization and allowing a new space, or room, for autistic self-advocates? How can autistic people enable us when some of us are listening? What about virtual spaces and how might they be maximized? How can we allow for dissent and debate that reflects true democracy and recognize that not all autistic people feel the same way, not all people require the same supports, and not everyone will agree? What must we recognize in ourselves as neurotypical teachers, parents, therapists, caregivers and charity organizers in stepping aside and lending a hand to create this space? In speaking of charity and it’s historical role of “handing out,” how can we build communities that support self-advocate needs? In one sense, I truly understand the need for autistic people to have this space, and predominant “voices,” if you will, but we also all have to recognize the important role of allies and parent supporters and educate families about the history of the autistic self-advocacy, and its fragility. We cannot afford to lose the ground gained by autistic-self advocates! Autistic people also have to allow for us to become political facilitators alongside autistic people without us more verbally loquacious dominating the agenda or “speaking over” autistics. Autistic people can teach us patience and learning to listen without speaking over. Let me ramble here by making another comment – research teams and funders have to recognize this urgent need for emancipatory research that requires much patience and time, and make allowances for it.

Here, I acknowledge the independence via interdependence model that I write a lot about – that we tend to advocate for complete autonomy and independence that drives our therapies and expectations for autistic people before giving them full value and citizenship. Yet when we truly look at how interdependent we all are – on our families, on technology, on a service system, none of us are independent. This is the area in which we need to discuss when we talk about autism services – not a cradle to grave service where we put autistic people away, but a collective economy of support where autistic people can also contribute and where we do not view responsibility as something tragic. I can only think that in North America this notion is strongest – when I lived in Europe, families often stayed in the same home all of their lives and supported one another. Part of me can’t help but think that this notion of supporting our children into adulthood is a construction of the industrial revolution – where children were sent into factories to work. As we see those structures crumbling, I hope we can reconsider that supporting one another should be something to be grateful for, not a tragedy. Will our quality of life not improve when we know that all of us who need more support at various points in our lifetimes, will also be respected, supported and not be made to feel guilty or less than for it?

Finally, I can think of all the “job creation,” for autistic people and support workers alike when I think of Ontario’s new proposed budget. Yet as long as we are wedded to this false notion of “independence,” we might continue to build cities which isolate everyone. For certain, this is the ultimate paradox – I think we all feel isolated in many concrete jungles, and we need a call to building collectives and communities which utilize and respect the varying contributions of all citizens. To respect human variation and possibility for re-building, I draw on Jennifer Sarrett’s Autistic Human Rights: A Proposal:

“[H]uman rights are to be enjoyed based on fundamental frailty and vulnerability inherent within the state of being human. By focusing on vulnerability, a state that all people experience at various points in life, disability and difference becomes an experience that can tie all humans together.” (2012, Disability Studies Quarterly, unpaginated)

Also, quoting Eva Kittay, Sarrett includes that while not all people are equally vulnerable, that is, some people are more vulnerable than others, it does not mean that the more vulnerable are less worthy or entitled to justice, equality and human rights:

This principle, in contrast to the others, would not be based on our equal vulnerability, nor on our possession of rationality, a sense of justice, and a vision of our own good. Instead, it would be based on our unequal vulnerability in dependency, on our moral power to respond to others in need, on on the primacy of human relations to happiness and well-being.” (Kittay in Sarrett, 2012)

Sarrett further states that,

“human rights do not have to rely on a single doctrine – dependence or fragility or oppression or humanness or capability. The autism-based model described here is built on a foundation of dependence, individuality, and valuing human diversity, allowing for the inclusion of the entire sphere [note: she uses ‘sphere’ instead of ‘spectrum’ which she considers ableist] of cognitive, intellectual, physical and psychiatric traits within the human condition. Accounting for and respecting variations in the human state are central to the ongoing and dynamic process of developing human rights models most effective for any time and place. Any model of human rights should be in constant conversation with contemporary issues of diversity, medicine, law, and advocacy. Thus, all models…should be subject to alterations and updates to ensure the most acute and powerful application in every community and for every person.”

She notes that while some positive rights have been granted for education and health care, that the autistic rights model, fashioned after civil rights, has difficulty with the promotion of negative rights which includes the right to assemble. Sarrett says that negative rights are integral to this inclusive model of human rights, but self-representation and advocacy can be difficult for many non-verbal advocates who have assembled more easily online, and find real-time meetings and interactions very difficult. This asks us to reconsider how accessible our boards, committees and systems and how they enact as barriers to many autistic people. How might we re-organize our organizations? I, for one, believe that the Internet provides the future possibilities for the democratic process.

Reference:

Sarrett, Jennifer (2012). Autistic Human Rights: A Proposal. Disability Studies Quarterly. Vol. 32. No. 4.

Acceptance Is Action

Filed Under (Acceptance, Activism, Law) by Estee on 16-04-2013

Here are a few videos promoted by The Autistic Self Advoacy Network for Autism Acceptance Month with Amy Sequenza, Henry Frost and Kevin Barrett:

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And here, an interview Keep Hearing Voices with autistic self-advocate, Bev Harp.

Also of value to listen/watch are two legal/policy symposiums if you haven’t already seen these:

A Rehabilitation Proposal for Non-Autistic Canadian Citizens

Filed Under (Activism) by Estee on 11-04-2013

I highly recommend Alicia A. Broderick’s article Autism As Rhetoric: Exploring Watershed Rhetorical Moments in Applied Behavoiral Analysis in Disability Studies Quarterly by clicking here. In it, she describes the false premise of autism “recovery” of ABA therapy and the masters of “recovery” constructions, Ivar Lovaas, and Catherine Maurice. She also addresses the neo-liberal construct of corporate “charity” with careful analysis of Autism Speaks. A quote:

“One may argue that rhetoric is at its most powerful when it functions most successfully ideologically – that is, when the systems of ideas that it draws upon and represents are so naturalized and appear to be so commonsensical that one may fail to even notice what it obscures and precludes. Wilson and Lewiecki-Wilson (2001) argue that language and rhetoric play a performative function, ‘calling this naturalized meaning of disability into circulation,’ and in so doing, ‘actually restrict[ing] thinking about disability in any other way.” (2011)

I’d like to suggest a new Senate Committee Report to update the Pay Now Pay Later: Autism Families in Crisis which was drafted in 2007 after Auton to consider an additional prong, of “autism service” that would address the “crisis” that Canadians now face. That is, I propose a report to rehabilitate all non-autistic Canadians via an urgently needed national strategy as outlined in a Rehabilitation of Canadian Attitudes Towards Autistic Citizens report. This strategy would aim to accept autism as part of the Canadian mosaic and to recognize the substantive equality of autistic individuals. This would include, but not be limited to, education, inclusion, all services that assist autistic Canadians, as well as access to services and entitlements that are available to all Canadian citizens. Further, this report could suggest methods for committees that have “invited” autistic people to “stakeholder meetings” so as not to assume that all autistic people can communicate or participate on the same terms and time limits, and with complete independence (i.e.;without support staff or facilitators). This committee could recognize the value of autistic Canadian citizens in an effort to accommodate and make available the means by which verbal and non-verbal citizens can suggest, for themselves, the types of supports they may require to participate in their communities. Also, the report’s committees would consist of autistic individuals – the highly verbal to the non-verbal – and be a model for participatory methods.

The rehabilitation service component could involve 40 hours of intensive therapy per week to modify the behaviour of non-autistic Canadians currently engaged with autism charity, and the like. These individuals are often “trapped” inside the body of the rhetoric of science (a highly subjective field costumed as “objective” by lexical construction) and could be cured. This would recover all non-autistic Canadian citizens from subjectivity and discrimination – to name the core symptoms of this disease. This should be the treatment of choice to ameliorate the prejudice towards, and the exclusion of, autistic citizens which would thereby create a more united and inclusive Canada that accepts that autistic people are both different and equal. I strongly suggest that the Canadian government provide funding for this therapy as a “non-core medical service” to be funded under Medicare to help relieve the burden and costs of prejudice that eventually all Canadians will have to bear.

Some ways to incorporate “autism acceptance”

Filed Under (Acceptance, Activism) by Estee on 08-04-2013

To follow yesterdays post, I want to continue with some ways to incorporate “autism acceptance” into our communities while also resisting appropriation and totalizing effects. In other words, how do we keep the concept of acceptance open and as a human rights and substantive equality issue and to guard against the omission of others? As humanists, how can we work to include people at the proverbial table? Who is missing from it?

As Simon and Masschelein state in Shelley Tremain (2009), “what the discourse on inclusion takes for granted – namely, that human beings become individuals by belonging to a totality – is part of a governmental history and, furthermore, exemplifies the double-bond of individualization and totalization” (225). In the vein of bell hooks and others, “…disabled [people] may need some encouragement to explore the possible ways of being active subjects with options for transgression. Practices of transgression, in the context of inclusion, differ from a more antagonistic form of frontational styles of resistance; they represent a more agnostic form of struggle against those who attempt to exclude. Transgression could, on the one hand, be seen as representing a restricted level of engagement for disabled people; on the other hand, however, transgression could signal opportunities for practical involvement in battles that can be won….[this kind of exploration] may encourage disabled [people] to ‘escape grasps of categories.” (Simon & Masschelein, and Foucault in Tremain, 202).

At the York University Critical Disability Studies conference last weekend, as well as in other conversations, I usually will come across conversations within and from without the autistic community on how we could possibly include “lower” functioning and non-verbal autistic individuals. Usually the conversation peeters as people consider the systems and frameworks that are currently constructed, and how autistic people can function within them. This should illustrate the issue from the get-go – that the systems that are constructed are exclusive to many. Some of our more verbal members of the autistic community are permitted to participate because of the ability to acquire the “appropriate” skills, even if they are like exhausting performances for many. It could be considered as necessary to penetrate what was once even more impenetrable, but it doesn’t completely resolve our problem as a community. There are also folks doing participatory research in the field, yet often time and money constraints from research funding bodies don’t make space and time that is needed for the involvement of non-verbal individuals who need to take their time. These are considered, by normates in particular, as the least valuable members of our community because they are slow in a society that values speed, and this of course is conflated with efficiency.

The notion of finding ways to enable transgression is a possible way forward. In sitting on boards with “behavioural” (I’m using scare quotes for a reason, folks), and people who do not communicate typically, I can at least offer one observation that may contribute to this notion of acceptance – patience and consideration. For example, it is not great in a meeting if we say, okay that person’s formulating a comment or response so while we’re doing that let’s just move on with X. Rather, let there be silence so that others can have their say, in whatever manner they may say it! Let there be at least the time and the respect for people who need pictorial notes, who need time to use their devices, whose bodies require more space or close proximity or to jump up and down. My friends, could we all consider enabling other transgressive acts for freedom? These are the thoughts I wake up with every day as I enjoy interacting with my son.

I’d like to also add some great ideas from others for integrating acceptance into this month, and I hope every month such as this site from Autistic Self Advocacy Network and The Autism Acceptance Day/Month site and blog and The Autism Acceptance Project. It’s great to see folks working so hard for this. I guess I just don’t think “awareness” or acceptance should happen during solely during the month of April. To me that’s like being nice to a person one day a year on their birthday. I can’t even limit to a decade. The humanitarian movement should happen every day, and our need to promote acceptance speaks volumes about how people are feeling, treated and regarded in society.

Resource:
Shelley Tremain, (2009), Foucault and the Government of Disability, The University of Michigan Press.

Thoughts on “Blue” Campaigns for Autism “Awareness” Month

Filed Under (Acceptance, Activism) by Estee on 07-04-2013

April 2nd makes me quiet. So many voices, so many people who need to “speak” on behalf of many autistic people – I don’t think that this needs another voice… well, just not on April 2nd “Light it Up Blue” Campaign generated by Autism Speaks. Let me begin by a poignant finding by Paula C. Durbin-Westby in her article: Public Law 109-416 Is Not Just About Scientific Research: Speaking Truth to Power At Interagency Autism Coordinating Committee Meetings (Disability Studies Quarterly). As she sits as one autistic person on the committee to advise the Combating Autism Act agenda, she highlights that,

“in 2008, less than 1%, about $1.6 million of the $127 million total NIMH budget was allocated for services and supports reserach. This one percent, recommended by those who are considered high-level experts on autism, was supposed to cover the following: service delivery, community inclusion issues, transition issues, education, housing, transportation, health care access, and other service related research. By contrast, in 2009, $75 million was allocated to a single cure-related research initiative. The initiative funded? [that is, service initiatives]…”

It is more than clear, it screams, actually (not speaks) that funding priority is given to eradicated autism. Awareness campaigns are not devoted to understanding autism for the acceptance and for services that enable us to live peaceful lives within society. This is why sometimes it’s just not that inspiring for me to write blog posts during the month of April. It is also concerning that we are compelled to react to the Light It Up Blue and other campaigns that have denigrated and devalued autistic lives. As I write “autistic lives,” even, I sit uncomfortably, for it is a definition that tends to essentialize and determine a set of characteristics that are supposed to belong to all autistic individuals. This is difficult for people whose lives are indeed at stake – there is a need to demonstrate that lives have value, and pride movements arise from these need. However, it is important to remember that neuroscience is not at all empirical or objective. It is rooted in philosophy (theroy of mind theory and the like). When I see neuroscience portending to find the eitology of autism, I imagine giving Kant an fMRI machine. I’m not claiming that there is anything necessarily wrong with this curiousity, as long as we acknowledge that it is an human inclination to keep digging inside the body to find what makes us human…autistic people happen to be the targets. Notice how the rates of autism diagnosis always happen to increase right before Autism Awareness Month? The neo-liberal machine is hard a work. The autistic body, experiences “used” by science and then shaped by external “obeservation” – which is in and of itself shaped by a label and a framework named autism) – becomes objectified.

The question about Autism Acceptance Month, a response by people with the autism label to “Autism Awareness Month,” has unique opportunities to not only raise these issues, but to remain flexible. Humans are never fixed. Our knowledge and imaginings constantly transform over time and contexts. Autism is not a new invention and arguably, claimed Inge Mans, mental retardation didn’t exist in the nineteenth century – curious since this was the great age of Confinement for people labeled idiots and the “feeble-minded.” (I recommend C.F. Goodey’s, The History of Intellectual Disability).The language may change (as much as the ever-changing diagnosis’ as in our upcoming DSM V), but it seems that humanity doesn’t. There have always been disabled people and there always will be. The point to is to stay open to the possibilities and if we are going to promote awareness; this awareness of a history of disability, institutionalization, and abuse (of particular concern since ECT (Electric Shock Therapy) is on the rise in Canada and the U.S. for mentally “ill” people and people with autism, notes scholar, A.J. Withers).

There is a need for political action and reaction as well as this campaign for greater awareness and acceptance for what is happening to autistic people in society and why. The funding allocations loudly speak, or express, what Obama might call, “good folks doing not so good things.” (That’s not verbatim…but something like that). A critical inquiry into why we do and how we do it must always be pursued – how can the Autism Acceptance Movement create learning opportunities for folks who do not yet understand the complexities of disability? The medical profession is crossing borders with critical disability inquiry, but we need more. It does not yet understand disability.

The charity-model, using cure campaigns and illness metaphors, misses so many points and needs of many autistic people and families to live peacefully, and equally, in society as autistic people. Many more folks require assistance, services, right to education (which is not yet a given despite legislation), and different kinds of supports – how on earth is a paltry sum going to cut it, unless we are implying that the majority of funds for cure research is intended to cut out autism from society?

Who is Safe; Who is “At Risk?” Some More Considerations Before April

Filed Under (Ableism, Activism, Advocacy, Charity, Disability History, Government Services, Inclusion, NEugenics, Newgenics, Pity, Research, school, The Autism Genome Project) by Estee on 25-03-2013

As we head into April, I thought I’d post Protest on the Plinth which states that the value system from the Nazi era hasn’t changed much today. If people make out disabled people’s lives to be “intolerable,” then how can we make safe legislation?” asks the disabled woman in the video. It is not egregious to point to what happened to the disabled during the Nazi era and unpack the value systems that linger today – that lead to the belief that disabled lives are an intolerable economic burden on society. Posters of the “costs” of the disabled to the German “folk” were commonplace.

Systemic mechanisms (government programs, schools, corporate bodies) that tell us what kinds of bodies (and minds) we are supposed to normalize, regulate, or get rid of, or what are “acceptable” minds and bodies. Charity campaigns don’t typically tell donors that they need to be patient as corporations or as individuals; that they to collaborate with disabled people, work alongside people with disabilities, or that it is a disabled person’s right to be educated (instead of remediated as a “ramp” to normative education -see Moore v. British Columbia, 2012). They don’t talk about autistic and disability rights. Charities are busy raising money, mainly, for cures.

When scientific and representational linguistics point to children “at risk,” we might instead ask, just who are we trying to “keep safe” and why is society so dreadfully afraid of people with disabilities? Remember to consider language and how it both reflects, and shapes, the way we consider people with the autism label. From where I’m standing, however, we are definitely at risk, not from autism, but from an intolerable society.

And don’t forget to check about the counter campaign to “Light It Up Blue” by checking out the Autism Acceptance Day Blog Postings.

Will the real Autism Acceptance Project please stand up?

Filed Under (Activism) by Estee on 07-02-2013

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.

Aide Workers, duty to accommodate and autistic students in higher education

Filed Under (Acceptance, Activism, Inspiration, Law, school) by Estee on 23-01-2013

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!

The NRA, Mental Health Stigma, Blame, Services and the State

Filed Under (Activism, Disability Finances/Benefits, Discrimination, Government Services) by Estee on 19-01-2013

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)

Back from Oaxaca

Filed Under (Activism) by Estee on 07-01-2013

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.

Autism: The Target

Filed Under (Activism, Autism and The Media, Discrimination, Ethics, Media) by Estee on 17-12-2012

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.

New Autistic Self-Advocacy Projects Worth Watching

Filed Under (Activism) by Estee on 28-10-2012

There are those that say we don’t exist. There are a few who says neurodiversity is simply an ideology and not about “real” people. Those in the videos, they claim, aren’t autistic at all. They are fakers. They don’t have it as bad.

There are people who continue to parse hierarchies of suffering in order to make a case that they are more right and the rest are wrong. Those who claim priviledge of declaring a “truth” or “reality” should be approached with caution.

To that end, I invite you to consider what makes a social movement? What makes a culture? If shared experience, arts, space, embodiment, to name a few attributes we might use to describe them, then I think the continued affirmation of autistic existence that has created a neurodiverse culture or movement (that is the label as it stands today anyway, so let’s go with it) can expand our understanding of human difference and the challenges that many of us, or our loved ones, face. We are all on the ability-disability continuum by viture of life, ageing. While I do not claim to share the exact embodiment and experience of my son, I share the effects of his disablement in society every day. Considering the personal and shared experience of disability might be a way that we can forge empathy, sensitivity and new understandings. We have so much to share and discuss and there are many serious issues facing us.

I introduce (to those who haven’t discovered them yet) two new autistic self-advocacy organizations (this first one is a project OF The Autistic Self Advocacy Network), The Loud Hands Project,

and Autistic Intelligence Org, a mix of autistic self advocates and allies.

Also check out the Autistic Passing Project

I’m enthusiastic also about the age group of some of the new autistic self advocacy orgs, projects and blogs that are sprouting into public view. It’s not going to be easy. Autism organizations have racked up a questionable history, and there are many issues that we need to trouble and talk a lot about. Claiming identity and being proud of it is something personal as well as communal. Self identity and embodiment is also shaped by challenges, pain and even suffering — within the body and outside of it by the barriers we claim to belong to social construction. Organizing can be a way to welcome more people into the discourse. Embracing all of the aspects of being disabled or impaired is a way to be inclusive of everyone who has a stake in this.

I think all of us should encourage and support the efforts by autistic people. Projects help us to work out the way we think and feel about our situation as well as working for needed supports and asserting rights. If we are to critique them, let’s do so with respect. I think the purpose of self-advocacy movements has been largely misconstrued (or not even understood in a culture that both raises money for curing just about everything and proclaims that other bodies outside of their familiar own are “tragic”). We need to work on improving our efforts at enabling respect for all human life without demeaning or belittling an assertion of an autsitic identity (if one chooses to self-identify as such) or reinforcing the power structures that have oppressed disabled people for hundreds of years.

The Importance Of Collecting And Preserving Autism History

Filed Under (Activism, Autism History) by Estee on 17-09-2012

Introduction:

You can’t find a history of autism, or the term, prior to 1911 when Eugen Bleuler defined autism as a detachment from reality in terms of understanding schizophrenia. Try reaching for an autism history into the 19th century and beyond, and you won’t find it, necessarily. Historians of autism, and there are few, draw upon historical figures that possess our modern understanding of autistic traits as presented in the DSM IV. Some of these historians include Uta Frith, Mitzi Waltz, Harlan Lane and Michael Fitzgerald. Waltz’s book Autism: A Social and Medical History, is about to be released. It has been said that the practice of identifying autistic people in history is a bit like diagnosing the dead. Skepticism around the practice, perhaps assisted by current autism hype and politics, I would argue, might deter some historians from venturing into it.

In this post, I will cite the work of disability historian Geoffrey Reaume and his call for more research into the history of disability, and the proper saving of it amidst the tenuous nature of information located on the Internet. I will point out how autism history is relatively modern, how it can be in jeopardy by virtue of the “movement” for rights and recognition occuring online. To this latter point, I will mention The Autism Acceptance Project (TAAP) and its event The Joy of Autism: Redefining Ability and Quality of Life (2007) to illustrate how I, as its organizer and curator working with autistic board members and an autistic advisory committee, attempted to capture a recent autism history/movement by illustrating a few of the steps of assembly and dissemination as an historical exercise in itself. I attempt to illustrate potential issues and pitfalls in archiving a modern autism history. From reading Reaume, documenting thoughts, method and people is an important part of documenting history. This is already a long blog post and the topic deserves more attention than this format can provide. Finally, I will suggest that autism is still largely absent in the wider disability discourse, which might be more widely accepted if more research is done into the history of autism.

Collecting Autism History — Choices and Cautions:

The history of autism does not need to be limited to autistic people. As Geoffrey Reaume points out in his paper, Disability History in Canada: Present Work In the Field and Future Prospects, we need more research into the history of all disabilities including sensory disabilities, intellectual disabilities, physical disabilities, disability and eugenics, disability history as it intersects with race and immigration (and gender I would add), mad-people’s history, and activist histories. He does not, however, cite autism history, specifically. As I mentioned, because autism is a very recent diagnosis (1993), oral histories and autistic memoir have coincided with a recent disability rights movement of the 1960’s. These have contributed to a rapidly burgeoning Autism Rights Movement. We understand autism, therefore, in very modern terms and autism is still largely missing among a more vast body of disability history.

“In order to have a fuller sense of history, including where disabled people lead lives that are as mundane and full of contradictions as that of most people who are not disabled, a wide variety of sources need to be preserved and a wide variety of histories need to be told.” Reaume cautions us that the bulk of modern history, as it were, is locked up in our computers. One day, he argues, those computers will break down. The internet will dump our information; our emails are not printed on paper to be saved. Such correspondences have contributed to our understanding of how the disabled were treated and regarded by the medical profession. They also have illuminated the private lives and struggles of the disabled, as two examples.

This brings me to the thought of how much of our autism history, and the history of the Autism Rights Movement exploded online. Due to the very nature of computing and ease of use to communicate in this format for many autistic people, we also run the risk of losing it. It was one of the reasons I curated the exhibition during the event The Joy of Autism: Redefining Ability and Quality of Life in 2007. This comprised a series of events, lectures and visual exhibits.

Organizing TAAP and The Events:

As curator, (note, a non-autistic person) I attempted to capture the YouTube videos, the blogs by autistic people and autistic allies, the political debates and the resistance of autistic people to others ascribing an identity to them that was based in fascination and fear. Accounts had been recorded online as personal stories about behavioural treatment, schools, and institutionalization, parent abuse, infanticide, as well as statements about autistic perspective and personal strengths went unrecognized by the medical research community and the media. These usually took an online blog-form, although autistic people began socializing in online chat rooms and social games before then. Much of this was aimed at refuting popular mythologies that were proliferating about autism and people with autism as unaware and “not even in the room,” to describe a vacuous, unintelligent nature of autistic people.

We (interested volunteers and autistic people) exhibited important new websites and their content in a more traditional gallery-exhibition format. The exhibit was mixed with video, artwork, published work executed by autistic people on large signage, some printed on fibre glass as floating; thoughts, by autistic people, about how they had been treated and regarded. Different aspects were located in different gallery rooms at The Lonsdale Gallery in Toronto. Videos produced by autistic people and activists played on a loop so that the audience could watch as well as hear the voices of autistic people, some of them who used text-to-speech devices. YouTube was new at the time where people uploaded their videos. The generous size of the gallery befitted the echo of the videos — an autistic echo as the videos kept playing while the audience read signage and looked at artwork; a continual reminder of autistic presence. A room full of conference materials (conferences organized by and that included autistic people, such as Autism Network International’s AUTREAT) was made available so that visitors could conduct their own research. A glossy magazine full of writings and artwork by autistic people as well as interviews of two major artists in the exhibition, Larry Bissonnette and Jonathan Lerman, was distributed.

To accompany the exhibition, the lecture series was held at the Al Green Theatre in downtown Toronto. We produced a glossy brochure with the artwork and the presentations of our autistic and non-autistic presenters along with the purpose of the event. We intentionally located the event in the middle of the medicalization of autism and the “tragedy” model of disability and positioned autistic lives as a “joy.” This was done by writing title ideas down and distributing among the autistic advisory committee for comment and approval. The final decision for the event/exhibition title was reached by consensus of fifteen autistic people. The predominant othering of the autistic person was countered in the “redefining autism” part of the title in order to reaffirm agency and made the event activist in nature. It meant to stare back as a result of being stared at. Just recently, The Autism Acceptance Project which staged the events, has been recognized by The Autistic Self Advocacy Network (ASAN) as “one of the most important events in the history of autism acceptance.” This is a step to autistic people claiming their own histiory.

The Importance of Record Keeping:

With respect to record-keeping, we keep originals and make, then bind copies of newspaper ads and articles that gleaned a great deal of media and public attention at the time. All the lectures were taped and we will get permissions to get them posted online in an upcoming new iteration of the TAAP website. As for the exhibition, the content was photographed, so we have a few records in this format, although there are not enough to reflect the depth and scope of the exhibition itself. It is here I would recommend better photo and video recording and more thought into saving, archiving and disseminating the results and content of events. I had posted the limited exhibition photos online at The Autism Acceptance Project website (www.taaproject.com) , along with the submitted artwork and writings by autistic people. Recently, as Reaume predicted in his essay, we lost that information when the website was hacked earlier this year. Not all of our content is recoverable.

Also important is the abundance of resources and contributions at Neurodiversity.com, the work of ASAN (The Autistic Self-Advocacy Network) as well as other major agencies and projects run by autistic people prior to and after TAAP. Specifically, nerodiversity.com remains one of the websites containing and assembling significant autism history that is at risk of being jeopardized if not kept in hard-copy. Specific and notable to Canadian autism history is Michelle Dawson, a Canadian autistic researcher. Her work, under the umbrella-title, The Misbehaviour of Behaviourists, is a significant piece of the history of how autistic people are mistreated in Canada (The Auton Case, The Human Rights Tribunal, and her exclusion at Autism Society of Canada). She has recorded her work at the website No Autistics Allowed (www.sentex.net/~nexus23/naa_03.html). These are only three examples of many more autistic-run online organizations and individuals — all which must be preserved, recorded and interpreted. This is something that more researchers may wish to consider.

Can An Autism History Really Exist?

“…we have to value all aspects of our past and to instil this value in others who keep these records so that future disability histories can be preserved, written and debated for generations to come,” says Reaume. “In doing so, the historical memory of our collective past can, one would hope, make for a better future where disabled people are not marginalized and oppressed as has so often happened in Canadian history. The history can influence a collective sense of identity and political engagement. It can also influence public policies that have a direct impact on people with disabilities as policy-makers learn from the past while being influenced to improve practices in the present.”

I would wager that most people don’t acknowledge that a history of autism either exists, or could exist. When autistic people take note that they “don’t exist” in the consciousness of society, it would be difficult to own a history. In an activist vein, neither the term autism nor the recognition of autistics as valuable or capable, even within the context of severe impairments, exists as a widely accepted definition or understanding of autism. Within Critical Disability Studies, there is a lack of use of the term autism as we otherwise hear of the deaf and blind communities, one might argue, precisely because there is little written about autism in history. This connotes that there is still not enough citation of autistic identity and history, even within Critical Disability Studies programs, although there is acceptance that this is an area in need of development.

As someone invested in autism, rights, inclusion and autistic citizenship and identity, I feel this absence when reading Reaume’s citations of particular disabilities written in historical contexts, likely in light of a recent diagnostic label. In Critical Disability Studies, autism is lumped under the broader label of intellectual disabilities. Yet this lumping often ignores the particular needs and struggles within this community. While labeling can be dangerous and problematic, it can also lend itself to assisting and accommodating the unique needs of this population. Autism is unique in many respects, and requires a unique set of teaching methods, not analogous to, but parallel in terms of customization of education as we do for the blind, deaf or dyslexic communities. Autism also shares its history with the wider disability movement. It also intersects with race, gender, cultural, and socio-economic factors. It is important to note that while we share history within the context of our times, and with groups that may share discrimination issues, needs and histories are still unique. Further, not every autistic person shares the same experience, personal history, or opinion. In keeping with Reaume’s call, these are some more reasons to pursue historical autism research.

So we need to keep telling our stories. Reaume cautions us, however, not to exclude or revise history. Problematic approaches to history can include hagiography (making disabled heroes), presenting disabled activists as “devoid of flaws,” or histories which reduce medical interventions as “automatically oppressive.” To this he reminds us to value “all aspects “of our history. I would add, an “inclusive history.”

Research in autism is dense with analyses of cause and behaviour. I often wonder how far we’ve come from The Age of Enlightenment which uses its scientific subjects to deduce not only the nature of man, but its abnormalities thereby reinforcing the concept of normalcy and perpetuating our binary understanding of disability — the normal versus the abnormal. Neuroscience inspires us with a promise of understanding our intrinsic nature and raises bioethical concerns. Typical to how we’ve acquired knowledge to-date in research, we use comparative scientific methods. Counter to research that merely objectifies autistic people as subjects, and normal-abnormal viewpoints, we have vibrant autistic community who argue that we are not just the sum of our genomes. Researchers often overlook autistic voices – in the various forms that autistic voice rises up — and perhaps unwittingly threaten autistic agency. It will be curious to look back at our history, if only we interpret it ethically and save it for future generations. We have to begin with the research of autism history in many contexts and keep records, preserving them from the threat of losing information on the Internet, and assert the existence and the complex lives of autistic people.

Reference:
Reaume, Geoffrey. “Disability History in Canada: Present Work in the Field and Future Prospects,” Canadian Journal of Disability Studies 1:1 (2012): 35-81.

Barriers to Information and Communication Technology

Filed Under (Ableism, Activism, Autism and Learning, Communication, Discrimination, Inclusion) by Estee on 21-08-2012

Tagged Under : , , , ,

ICT = Information and Communication Technology

School is fast approaching and some autistic children get access to inclusive schools and others do not. One of the barriers to inclusion is access to technology and other supports that can enable and autistic person to participate and become successful. Many camps and schools have boycotted the use of iPads for fear it detracts from a student’s attention. Some schools prefer “traditional” methods, and argue that technology takes away from that experience.

In the case for inclusion and access, these are some of the antiquated attitudinal barriers we must work to deconstruct. Many non verbal autistic individuals, and other autistic individuals who learn better with computers for visual reasons as well as reasons to do with less distractive stimuli that can impede learning, need technology (and other accommodations) not just for school, but for vital communication and everyday functioning.

In an effort to break down barriers to access, “The Council of Canadians with Disabilities (CCD), a national organization working for an accessible and inclusive Canada, recently consulted people with disabilities about ICT use and recommendations on barrier removal and prevention.” Although there is a duty to accommodate, most schools and camps will not do so, especially for the autistic person. Here’s some more examples:

Stumbling Blocks

Although accessible ICT is available in the marketplace, it can take an incredible amount of self-advocacy and persistence for an individual to obtain it. Doreen Demas, who has vision impairment, discovered this when seeking an accessible cellphone from the Manitoba Telephone System (MTS). For customers without a disability, acquiring a cellphone that meets their needs is a relatively straightforward consumer activity. MTS’s original offer to Doreen was an inaccessible BlackBerry. Over a period of several years, it took numerous frustrating sessions with MTS representatives and a complaint to the Canadian Radio-television and Telecommunications Commission (CRTC) for her to obtain a contract, with reasonable terms and conditions, for an accessible iPhone. The CRTC has a policy requiring that Canadian cellphone service providers include an accessible product in their catalogue of devices on offer to the public.

Some post-secondary students with disabilities encounter barriers related to ICT. While a student intern, who requires large print, may be most comfortable using a particular program to enlarge text, the intern’s field placement agency may think it is reasonable to expect that person to use whatever programs are available on the in-house system. Although educational institutions and employers have a duty to accommodate disability-related needs, individuals continue to struggle to have such accommodations provided.

The other barrier is poverty. Most of our disabled population, due to so many barriers to employment and educational institutions, end up living beneath the poverty line. This also make access to essential communication and technologies expensive:

Like everything in the marketplace, ICT comes with a price tag. People with disabilities experience a disproportionate level of poverty. People with disabilities of working age are about twice as likely to live on a low income as their counterparts without disabilities. “There is the assumption that everybody can afford a computer. That’s an assumption. It is not a fact,” says Marie White, Chairperson of CCD’s Social Policy Committee. “Our most challenging issue is poverty.” Some people with disabilities face additional costs because they have to buy ICT, and they also must purchase adaptive technology to make inaccessible technology usable. In some provinces, provincial programs provide people with disabilities access to technology.

While some autism organizations endeavour to provide some grants to autistic people for access to iPads and the government subsidizes other communication devices, there are wait lists and rental fees can still be expensive (you can seek some assistance through the Ontario Ministry of Health and Long Term Care).

For Adam’s sake and like many other parent advocates, I’ve had to learn a lot about AAC (Assistive Augmentative Communication) and how to use it by myself through courses and “old-fashioned” book-learnng. In turn, I train many of Adam’s teachers and support workers in his use of the iPad and with typing. Finding SLP’s trained well in the field is difficult but necessary, and there are a precious few who do it exceptionally well. While SLP’s are typically trained in “speech” functioning, there is tremendous value in their teaching to the ways and means of autistic communication, literacy and the use of devices for advancing skills. The device is often referred to as the individual’s own “voice” or “talk box,” and should be treated with the same care and respect.

It’s tough to still get people on board at the school level, to see devices as a necessity for many autistic people, and to include them with the same value and respect as we would the voice of any other child.

I hope you have some success in using this information when you approach the school boards and other support workers.

References:

Integrated Access: The Right to Universally Designed Information and Communication Technology Evolution of Access—Building in Access to Information and Communication Technology, Abilities Magazine.

Source: “Personally Speaking: Poverty and Disability in Canada,” Council of Canadians With Disabilities.

Video on The National Action Plan from the CDC:

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.