I know I don’t write about Adam that much these days. I’m always caught in ethical considerations about his right to privacy and protection versus the benefits of sharing stories. I work a lot with autistic adults theses days as well (am always grateful to have them in our lives and realize how sharing of information and differences of viewpoints benefit us all), and I also work and play every day with Adam. I juggle between my studies, re-growing work with TAAP and as his mom – teaching him after school when I can. Single motherhood brings it’s own worries – am I giving him enough? What would happen if I get ill?, among many questions. I do the best I can and I have to accept my situation. As usual, I digress…

Adam is typing on his own now, is becoming a trampoline champion with an excellent coach, and has a friend. The challenge and sorrow, when I feel any, is the isolation by comparison to other children, or quite frankly, the concern I feel when people ask me questions that are proliferated by the media about how “functioning” Adam is. When people ask me about Adam’s functioning level, I get to ask in return why that matters to them – I think it’s important to ask others in order for them to think about it deeply. I then usually respond that I love Adam as he is, and go on about what great person he is. Functioning levels are arbitrary assessments made by subjective observation – by an individual who thinks they know something about autism, but in fact, just follow a set list of criteria that continues to change. Frankly, the most valued professional advice I would receive is the answer “I don’t know” and someone who considers Adam’s unique needs and strengths. Also, permit me to meander, it should never be an assumption that autistic people prefer to be alone. This is not fair – all autistic people are different and most express a profound loneliness. As for spectrums and functioning levels, this discursive dialogue must end if we truly value all autistic people.

In other words, there are no prognostications that are accurate. Ask any autistic adult and read through their psychometric assessments and old IEP’s and they’ll have plenty of comments – none of them positive. In fact, I am very concerned about the material reality these stacks of binders (recording bowel movements and the like) get absorbed by an autistic child regarding their identity and later, their self-narrative. I often think of taking all the binders I’ve kept over the years, papers, assessments and do something with them – no not burn them – but make an installation regarding this question: Shouldn’t we as parents be concerned about a forthcoming identity crisis as our children are told what they are by a mere label that describes virtually nothing about person-hood and individuality? If I could turn the clock back eleven years, what would I change?

I support Adam’s development and person-hood – his right to access and individuality. Further, and I have to keep saying this, it disappoints me when autistic children are not allowed to go to various programs with an aide worker. An aide worker enables many to contribute, work, participate, and feel a more a part of our community. While I cannot predict what level of assistance Adam might need when he gets older, for instance, this is besides the point – the issue is the right to access. Our autism committees and charities and governments must start considering these rights as opposed to simply believing that autism can be cured and kids can become normal with enough therapy. Instead, when we consider the value of people, we have more chances of seeking education after the age of 21, opportunities for vocational training, college, and university. More creative strategies for living situations can be considered such as co-living, assisted independent living (therefore interdependent living), micro-boards and aide workers and educators can also be treated with more respect as valuable assistants to autistic individuality and right to choose. Strategies for the latter entail visual supports, AAC, extended time, patience, teamwork.

Back to Adam…he is partially verbal and this is growing every day now as I watch him also grow taller. He is enabled more as he types a first word which seems to prompt the rest of his sentence. Some days he’s more chatty than others, which seems to be common for many partially verbal autistics. Through patience and repetition, Adam has begun to take care of himself. Adam can talk on the phone a little longer, dial his grandparents, get dressed, brush his teeth, and ask me where and what questions verbally, that is, on the more verbose days. I guess I’m saying this for all the years of misunderstandings by parents that autism acceptance means just letting a child sit around all day and do nothing. This to me is also an ableist concept which presumes that autistic people can’t do anything at all when the truth of the matter is that everyone has a different situation and we address each child uniquely and with respect.

I think many teachers and coaches have enjoyed their own teaching successes with him. I also think parents must work harder to readjust their expectations to support education and inclusion. Teachers cannot succeed if we have unreasonable expectations of normalcy and, as parents, we should be startled at this word as it discriminates our families. As we accept this we should also not accept the unfair exclusion and segregation of autistic children and the lack or regard for their education! In this, education will also have to adjust and I expect it will as computerized learning is becoming more popular – where children can be taught online and monitored and facilitated when needed. The potentials of the Internet and computers have not yet been fully tapped and could change the face of individualized education as well as citizenship. As commerce takes place online, we are also looking to the Internet for online voting – the last bastion, arguably, of citizenship. It was Singer (1999) who said “[t]he impact of the Internet on autistics may one day be compared to the spread of sign language among the deaf (1999:67). Alas, however, let’s not segregate autistic children into a room full of computers. We all need human interaction. Also we need to consider this by Alison Sheldon (2004):

“There is a small but growing body of work within disability studies that emphasizes technology’s ‘double-edged nature’ (Oliver, 1990) and stresses that it can be ‘both oppressive and emancipatory, depending on the social uses to which it is put’ (Gleeson, 1999:104).” (Sheldon, 2004: 157).

Sheldon suggests that some of the barriers to access include its cost. “We must not be distracted…into denying the socio-structural origins of the problem. Access to technology is not simply a technical issue with technical solutions. The inaccessibility of technology is just one more symptom of disabled people’s continuing oppression.” (157).

Also, to balance this drive towards access to technology, Sheldon states:

“…in the current political climate, the increased use of Internet technology as a means of disseminating information may have adverse effect on other means of information provision. The unconnected majority of disabled people may find that accessing information (and indeed other consumer goods) in traditional ways becomes even more problematic as these facilities become available online. Thus, the Internet is not a panacea that many suggest. There is still a need for appropriate and accessible information to be disseminated to disabled people in other ways, or the disabled community may simply become yet more polarized.” ( 157).

As I suggested when the iPad became popular for autistic children in schools, we cannot expect it to replace teachers, parents, the knowledge to teach autistic people how to communicate by AAC and/or supported typing. Technology should not become another means to segregate.

Finally, to end today’s ramble, it’s time for us to reconsider the spectrum concept. It’s based on a hierarchical system of who is better functioning which is discriminatory in so far as it implies whose life may be more valuable than others. It effects the way we educate, include or exclude, and keeps autistic people from obtaining fair treatment and equality of well-being. And, after all, none of us can predict the future and autistic people do not “fit” neatly into the high and low functioning paradigms.

References:

Sheldon, Alison.(2004). Changing Technology. Disability Barriers – Enabling Environments. (John Swain, Sally French, Colin Barnes, Carol Thomas, eds). Sage Publishing.

Singer, J. (2003). Foreward: Travels in Parallel Space: an invitation, in Miller, J.K. (ed.) Women from Another Planet: Our Lives in the Universe of Autism. IN: Dancing Minds, pp. xi-xiii.

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As part of my doctoral research, which will begin this fall, I will be studying emancipatory research and social organization for our community. With autistic folks, we hope to assist clinicians, therapists, educators, parents, caregivers to support autistic rights as one of our projects.

Allow me to share some extensive quotes from Carole Pound and Alan Hewitt’s Communication Barriers: Building Access and Identity for your consideration. I do hope that many others will engage and invest in research for our non-verbal/ communication-challenged populations:

“…an interesting additional challenge is that if language is the core of what makes us human, and the primary means of exploring new narratives of illness and disability, how do individuals negotiate personhood or the development of changed identities following sudden loss of speech, understanding, reading and writing? How does your own and others’ difficulty with understanding and using words impact on your ability to talk about and question fragile new forming identities with others who are also grappling with a concept at the edge of words? Given these difficulties, how much greater is the risk, as a language-impaired person, that your personal disability narrative will be hijacked by outsider stories constructed by families, professionals, researchers and the media?” p. 165

“Many people explore concepts of disability and identity by being exposed to and engaging with discussion of alternative representations of disability. New stories of disability can challenge internalised stereotypes offering a precious escape route away from the set of ‘tragic stroke victim’ or ‘courageous little fighter’ paths purveyed by mainstream media and disability charities. The means of accessing new narratives is not obvious when academic texts, articles, and website stories are hidden behind a veil of language.” p. 165.

“Meeting, supporting and just ‘being’ together are powerful experiences which, in many respects, transcend words. Meetings between people who share a common communication disability, but who each individually require different levels and types of communication support, are not without challenge. Negotiating communication support from non-language-impaired people, such as relatives, volunteers or health professionals, is an option but one which runs the risk of meetings being dominated and controlled by those who can speak and write. Notwithstanding these challenges, self-help groups remain a rare bastion of power and identity for many people with aphasia.” p. 165.

“Access to a sense of personal and social confidence, to a more certain identity, is for many people a pre-requisite to asserting one’s voice, to feeling you have a possibility and a starting point to interact with power. So language, identity and power become crucially interwoven. Without language, it is very hard to grasp the core of identity, and without language and identity it is virtually impossible to hold and interact with power. How, then, can those who possess intact language and power develop skills, environments and structural supports which acknowledge this imbalance and model more equal power relations?” p. 165

“Those charged with implementing communication access need to think creatively about ways of engaging people, processes, environments and infrastructuers with new communication practices, practices that attend, non-tokenistically, to the diversity of communication.” p. 166.

Some of the ways the authors suggest for assisting and organizing for those with communication disabilities are:

-training for those without communication disability;
- including ‘interpreting’ skills enabling non-communication disabled people to adapt their spoken and written language to make it accessible, and training in monitoring language for clarity and flexibility;
-supporters who offer one-to-one interface between people with and without language impairment. (p.166)

“At Connect, for example, trained communication supporters facilitate inclusion in meetings by going through papers at pre-meetings, supporting the person with aphasia to follow conversational exchange and ask questions, by taking notes on line and by spending time after the meeting to review ideas, concepts and decisions. Communication access training focusing on written documents is a further aspect of developing communication skills, supporting everyone in an organization to reword complex, abstract documents and information into clear and concrete language. Training also supports people to consider format, layout and use of pictures that most readily support communication access. The situation where everyone in the organization, from therapist to receptionist to researchers to finance director, takes responsibility for monitoring and changing their use and presentation of language is a healthy first step towards inclusive communication.” p. 166.

In the autism community, it’s just as important to look to other community’s that share similar challenges, and to read what they have to say. Often in our community, we tend to get locked into autism labels which confine us to consider that autistic people, with “different” behaviour, cannot be capable of understanding language, although we have enough research and personal accounts to seriously challenge that assumption. As researchers engage in ways to “enable” autistic people to communicate, which is important, we also have to consider the ableist dimensions of technology and language training. We have to consider that power comes from those who can communicate, and to rethink our organizations and the way we do and do not provide access. As suggested, communication seems to assure identity and power. In its absence, does it mean that an communication-impaired person is not a person? How accessible is current technology to autistic people? What are the barriers to access which include financial issues, attituidinal issues in AAC provision? What about the way we enable or disable a different way – perhaps we can coin it an autistic way – of information gathering and language construction (or any other kind of construction such as art, the way information is gathered, learned and expressed)? We tend to assume so much about how people should be and it may behoove us to think that neuro-normative ways could very well have its own limitations. Perhaps its time to cross borders.

Reference:

Pound, Carole, Hewitt, Alan. (2004). Communication Barriers: Building Access and Identity in Disabling Barriers – Enabling Environments. (John Swain, Sally French, Colin Barnes, Carol Thomas, eds). Sage Publications.

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The RDSP is a savings vehicle to provide future support for persons with disabilities. Parents or guardians may open an RDSP for a child. However, adults with intellectual disabilities and others whose competence may be an issue may face challenges in opening or withdrawing from an RDSP without undergoing an expensive and lengthy competency process. “We are extremely pleased to be asked by the Ontario government to undertake this project,” said Professor Bruce P. Elman, Chair of the LCO Board of Governors. “It reflects recognition of the high quality of the LCO’s work and its contribution to law reform in the province.”

The LCO will draw on work in two prior projects in which it has released final reports, its Framework for the Law as It Affects Older Adults and its Framework for the Law as It Affects Persons with Disabilities. It is currently undertaking a large project on capacity, decision-making and guardianship from which the RDSP project will benefit. The LCO will also call on the relationships with legal and academic experts and community members developed in the process of the older adults, persons with disabilities projects and capacity projects.

Launched in September 2007, the LCO is funded by the Law Foundation of Ontario, the Ministry of the Attorney General, Osgoode Hall Law School and the Law Society of Upper Canada, with additional financial and in-kind support from York University and support from the Ontario law schools. It is housed in the Ignat Kaneff Building, York University. It operates independently of government to recommend law reforms to enhance access to justice.

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Aussi disponible en français

Patricia Hughes
Executive Director
Law Commission of Ontario
(416) 650-8406
LawCommission@lco-cdo.org

Other News:

Inclusion Day at Ryerson University: July 6, 2013. or visit www.taaproject.com for a better view:

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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.

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We’ve been typing every day – from stories, play and he types a lot at school on his own, and I want to keep showing others how to integrate this into most aspects of his day. My dad keeps a running video log when he sees us working, Adam’s Speech Language Therapist (SLP) keeps photographing us at work. I keep thinking I’ve got to put this together so that other people can also see it – and show how when Adam just begins typing a sentence, he can then get it out verbally just by typing the first letter. I’ll pull out my single-mom card now – my plate is so full and I’ve got so many projects on the go; this is one of them. Focussed, goal-oriented typing seems to have had an effect on his ability to focus and planning to say the sentence, and this is becoming like his own “prompt.”

I’ve just finished a long lit review for my thesis on Wretches & Jabberers and I’m reviewing a few articles for the Canadian Journal of Disability Studies. I hope to spend more time coalescing the past few years on the topic of language, affect and typing and how I’ve played a part in Adam’s as well as how his autism school has cooperated when this method is not specifically integrated into their program.

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This year, I booked his favorite place where he learns trampoline. He is getting quite good at it (with a dedicated coach). I thought he’d like to show off his new skills, and indeed he did. Every year as well, I invite autistic children with one or two typical children. There’s always someone new we get to meet – school never seems to be a stable place over the years so we end up meeting new people all the time.

One year, I had a company bring in snakes and animals – the kids loved to be able to touch them and watch them move. Another year I did an art party. This year, a place where children could partake in circus arts. And every year, I will always hear from a parent that this is their autistic child’s first birthday party – that their “typical” children will get invitations all the time, but not the autistic kids. I suppose this makes me feel more resolute to keep having “autistic parties” – in fact, I prefer autistic children. I find them easier to get along with and grateful, even if this is not demonstrated with verbose thank yous. I love inviting children to play in the yard and I’ve become quite familiar with “difference” that I don’t expect children to behave in a particular way. One can feel contentment.

It’s as if we are living on an island and people come to visit, but never enough. Adam loves when I invited my friends over. Most days he’ll play and giggle and then he has the option of taking his own time outs when he needs them. I think a lot, however, of how we can’t get through a day without having to explain ourselves out there “in the world,” without being evaluated and observed, but this doesn’t happen with our friends. Friendship is when you don’t have to explain any more. I try to imagine how autistic people and others with intellectual disabilities feel with having to try to explain themselves, or try to be understood, day in and day out. As a typical person, this is hard enough.

I got an email this morning from one of the mom’s. She said that her guy smiled all the way home after the party. That’s all I want, and I imagine, all that Adam wants too – an opportunity to show off, be able to do something well, and most of all, to be invited to the party. We all want to be happy that we made the effort, and ultimately accepted without question.

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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:

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“It is clear that our empirical propositions do not all have the same status, since one can lay down such a proposition and turn it from an empirical proposition into a norm of description. Think of chemical investigations. Lavoisier makes experiments with substances in his laboratory and now he concludes that this and that takes place when there is burning. He does not say that it might happen otherwise another time. He has got hold of a definite world-picture – not of course one that he invented; he learned it as a child. I say world-picture and not hypothesis, because it is the matter-of-course foundation for his research and as such also goes unmentioned.” (176, Wittgenstein, On Certainty).

I recommend this little book to question notions of “truth,” “fact,” and how we impute the meaning of autism inside the body. While certain physical properties may be observed, the meaning of them is fabricated by us.

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“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.

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Here they are at a panel at Chapman University. As for my son, he is asked to type independently by his teachers for work. At home, I support him to communicate more complicated conversation. Some days he is fully independent and other days he isn’t. I believe that provided supported communication is a substantive right as it is for the Deaf community to have interpreters to interact in society. I view this only as a way to view how autistic people are not granted the right to supported communication or many forms of assistance or devices as a right because the ABA lobby in Canada takes the attention away from these rights.

(Also note: such a comparator group was not used in Auton v. B.C. because autism was cited only as a medical condition that should receive remediation under Medicare…which is very problematic on many levels for substantive equality, and which deserves more attention than I’m writing in this post. The Auton case is an example of adverse effect discrimination, that is, not recognizing the right to be different, but instead, simply put, that autistic people need to be remediated or normalized before having the right to be included and/or educated and/or to participate in society. The case is so problematic that I encourage people to read Michelle Dawson’s factum. I also drew attention to this in Moore v. British Columbia, 2012 where this adverse effect was acknowledged in the factum. I have also written a series of papers on the law which may be added to this website at a later date).

My son’s speech (the oh so important goal of most people for better or worse, and often to the detriment of some autistics) happens to become more fluent as he is supported. He’ll begin to type a sentence, and then more able to complete what he’s started by speech. This shows that it acts, for him anyway, very much as a prompt. An important one.

Enjoy watching this in support of autistic people:

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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.

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“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?

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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.

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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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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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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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And Here is the TAAP promotional video created in 2006:

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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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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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