Loving Lamposts, Autism, and Remembering What’s Important

Filed Under (Acceptance, autism, Inspiration) by Estee on 09-07-2013

lovinglampposts_header

In 2007, I went to Edmonton to speak at Autcom. I happen to be presenting again at Autcom in Colorado this year about how to support autistic rights as parents, teachers, therapists and caregivers.

At that conference, I was interviewed for the movie Loving Lamposts (2008) which I saw briefly when it was released in 2011. I’ve spent much of the day today re-watching it as I write my thesis. I recommend you watch it for Roy Richard Grinker, Ralph James Savarese, D.J. and Emily, Kristina Chew, Charlie and James Fisher, Dora Raymaker, Sharisa Joy Kochmeister and her father Jay, Stephen Shore, Simon Baron Cohen, Paul Collins, Christina Nicholaidis, Kassiane Sibley, Nadine Antonelli, Lila and Lyndon Howard (boy you touched my heart), and more… and of course the maker of the film, Todd Drezner, his wife and the person they think about all the time, Sam.

It is an important movie for parents (and educators and doctors and…) of autistic children to watch. I don’t think there is any parent, no matter how accepting of our children, who don’t struggle with the temptation to succumb to the prevalent notion that we should be doing more therapy, advocacy, volunteer work and the like. The temptation to believe something is wrong when your child is the minority remains strong, and I remind myself how equally strong parents have to resist this negative vortex that takes away valuable relationship time. And, as stated in the movie, much of my thesis also has to do with how negative views, notions of abnormality and the language we use to describe autism can be assimilated by autistic people as part of their identity. This is really important to me as Adam’s mother. He is now half-way through the age of eleven, and after a really tough couple of months this year, as Adam was communicating something important to me, I consider that pondering my role, my beliefs, how I interact with Adam is, for me, a daily activity. In other words, the work I have to do as his parent on myself is not yet complete; what he wants for his own life and what he can and cannot do just is and I have to help him with that. In this, accepting autism is the hardest work I’ve ever done, and more often than not, the most gratifying. So, I just want to say thanks again for Loving Lamposts to remind me of this, for I believe we could all use reminding. Along with Wretches & Jabberers, it’s one of my favorite autism flicks.

It’s time to think about screenings and have more serious discussions here in Canada regarding how we support and regard autistic people. I sometimes get despondent when I see that ABA is the only option for our autistic children, and how that movement has gained such a hold in the field. It is of utmost importance that we discuss various habilitative services, the right to choice, the right to communication and devices and workers to support communication, to be autistic, the right to be accepted, to love, to be educated, to be supported in life and in finding purpose. My job as Adam’s mother is to make sure he has everything he needs to be an autistic person and everything he needs to fulfill what he wants to do in his life. And what I want for both of us is to enjoy our time together. It’s really important not to forget that.

Autistic Freedom

Filed Under (ABA, Ableism, Acceptance, Activism, Advocacy, Anxiety, Art, Autism and Intelligence, Autism and Learning, Behaviours, Communication, Computing/iPad, Contributions to Society, Development, Language, Law, Movement Disturbance, Obsessions, Parenting, Politics, Safety, school, Sensory Differences, Transitions, Wandering) by Estee on 26-06-2013

I’ve been thinking and planning with Adam’s team the next stages of his learning and doing our map project. Every once in a while, I got down the dark whole of blog comments and blogs that consistently regard autism, even its many complications and struggles, as inherently “bad.” The issue we have with thinking in these terms, although safety is an ongoing concern for many parents including myself, is that we think we can shape behaviour without truly understanding it, and that what we are talking about is bad behaviour. Behaviour is something that we can control, impulse and many disabilities are not constituted by the will of a person. So when we talk about shaping behaviour and “positive” behavioural support, we always have to question our subjectivity and how we’ve come to make sense of autism.

Given many of our children are not provided access to alternative communication support, and cannot tell us otherwise, and that it takes time and care for many autistic people to learn how to communicate (if they can), the Antecedent, Behaviour, Consequence (ABC) mode of tracking behaviour will remain problematic, and the very recognition of that can be helpful. There are often too many conflating factors that precede a behaviour so, while we do our best to interpret it, it is always difficult to claim one cause. Here I find that I’m needing to ask many different players in Adam’s life for information so that I can cobble together the best interpretation I can, bearing in mind that this is merely an interpretation.

So with recent events and noticing Adam’s propensity for visual memory, needing to know his environments, I continue to study maps and autistic art and will experiment how this might be useful for Adam. This is another example of the visual map I found by an autistic artist found at Drawing Autism: 50 WAtts. It’s part of my interest in helping Adam draw his own maps as a way of understanding his own environment. This means, I have to be careful how I enable and support him, and be in a continuous reflexive state of mind in terms of enabling versus prompting him which would therefore NOT be his own communication.

Felix: Imaginary City Map, Age 11

Here’s how the artist responded about the work:

What was the inspiration for this piece?

Generally I start drawing one street on different spots on the edge of my paper. I make the streets grow toward one another.

Who are some artists that you like?

None. I study road maps and atlases in detail and generally I scroll the full track of our trips on Google Earth.

I turn now to education in hopes to keep honing in and improving it when I think of Adam’s needs. Under the rubric of the Medicaid system in the US – a system that is already in existence – advocates seek more, or varied, habilitative services for autistic individuals. This is an important beginning within an existing system and we have to keep discussing the medical model and its effects on the way autistics are included and regarded as full citizens, or not, in society. In Canada, we also require more choices that fit with parental values and wishes for their autistic children, and this was addressed by Doug Reynolds in his paper for Autism Ontario: Looking Forward: Has Intensive Early Intervention Hijacked the ASD Agenda? The work of autistic people in this is valuable in how I think about Adam and his education and the extra supports and help he needs. Bear in mind, I write here a blog post, not an essay. Here are some of the ideas that I think about that I have not yet formatted into a paper.

To go on, if a parent wants an education for their autistic child, they should be able to work with a school to attain it using some key principles:

1) Respect for autistic identity and personhood;
2) Understanding learning at one’s own pace and an acceptance of it (as opposed to a linear model for learning and development);
3) Understanding and completion of complicated sensory profiles and the time it takes for accommodations to be put in place and,
4) recognition that accommodations frequently change and must remain flexible;
5) Recognition and acceptance of family-hired (which could fall under a direct-funding model from government support) support workers as reasonable accommodation in classroom – for transitions, programs, to help with accommodations and if needed, supported communication and whatever accommodation an individual and family might need to enable success;
6) Transparency by schools – to allow parents in for observation, to review class binders, etc. Considering many of our children are non-verbal, it would be good to not only communicate in binders, but to allow drop-in visits (even if a bit of arrangement is needed to respect others). This enables open-hearted communication and better accommodations.
7) Communication aides and technology and access to supported communication and devices as legal right to communicate as autistic people. As an example, an ABA therapist will often say “use your words,” thereby implying that an autistic child is stubbornly with-holding them. Considering the levels of frustration an autistic person has when they cannot communicate, do we not think they would use their words if they could?);
8) Recognition that most autistic people we name as “inconsistent” and “discontinuous” or “having regressed” is often a result of sensory issues and transitions, and that learning happens at unexpected rates. Sometimes, the teaching agenda must be put aside when an autistic person may seem “disregulated” and build back tolerance. An autistic person can often jump several grade levels in reading, for instance, and then appear to have regressed. This is not necessarily indicative of a regression so much as a need for a body to regroup. Therefore,
9) testing autistic people academically so they can advance grades must happen with re-presented formats, over many sessions, and then, the best result should be taken as an achievement of grade or pass so that the autistic person is not held back until they “recover” from autism to normalcy and thus never allowed to advance, or potentially restrict their pace and ability. To understand the seriousness of withholding education as a right, see Moore vs. British Columbia and the note that remediation may result in adverse effect discrimination because it assumes a person has to reach a certain level of normal performance before granted the right to be educated. Of course we want children to generalize skills and be as independent as possible or to achieve an 80% mastery, but often this concept of discontinuity is missed or misunderstood and education is held-back.

These have been my considerations of late and, and I support a variety of methods that befit a child and the combination of many may suit for different people and different situations, so long as they do not harm or torture an autistic person.

ABA is pretty much the only method which is used in Canada to remediate autistic people before granted access to education (particularly people labeled with Low Functioning Autism, who are non-verbal, or who have complex sensory systems). It can be a useful strategy also within a curriculum but it needs to keep examining itself from within and by studying autistic autobiography and potential effects of behaviourism on self-identity. I am suggesting that autism schools also need trained teachers in regular and special education and need to:

1) Be inspected by the Ministry of Education for meeting curriculum requirements (the adapatation and accommodation piece is an extended discussion);
2) Adopt other methods that we know help an autistic person learn through re-presentation of materials (see Judy Endow);
3) Be reflexive about the psychological effects of shaping behaviour and compliance may have on autistic individuals self-esteem and identity;
4) Learn creative methods and enable an autistic person to go on outings to educate not only life-skills, but other interests by using other methods and creative strategies. I remember one professor of an autistic child stating that when her son was interested (or people tend to label “obsessed” with asphalt), she took him to an asphalt factory.

Do schools undergo this kind of creative exercise for autistic children who, for instance, may bolt and may be so enamoured with routes and maps so as to learn something as opposed to controlling behaviour? Sure, we have to attend to immediate safety concerns, sensory regulation and building tolerance – these are important steps to an autistic person’s success. Yet my question persists – what can we do that teaches an autistic child to creatively channel their passions and proclivities? What are we telling an autistic child day-in and day-out about them when we ask them to “comply” to our agenda without enabling some of theirs? What is freedom if not mobility? Is an autistic person a slave to the performance of normalcy if they are not allowed to freely move their bodies in order to feel safe and secure? (See Judy Endow and Tito Mukhopadyhay). For instance, there is so much autistic autobiography about how autistic people need to protect themselves from over-stimulation – reverting to their iPad in order to be part of a group, squinting their eyes, or if they do not feel their bodies, they feel frightened and must flap their hands or lie on the ground in order to feel safe! If we are talking about “safety” how are we helping? To what extent to researchers and teachers use and take autistic autobiography seriously?

The other issue I need to bring up today is one of freedom of choice. What I find concerning about models of teaching for autistic people specifically is the judgement of some parents against other parents for choosing what they feel is right for their families and their children. It is not right to state that an autistic person has to undergo a certain drug or therapy or blame a parent or an autistic person. The freedom of families as well as autistic people is at stake, and while I wish to trouble this, I realize this has many angles and complexities within such a discussion. Some autistic people feel a parent agenda, if it is one of just becoming normal without critical regard, can result in problems when autism is seen as a disease that requires potentially harmful remedies. So by no means is this discussion an easy one, but there is no freedom if Canada only presents and makes available one kind of service. In short, Canada, with an autism agenda led mostly by parents, needs to consider what it’s building and its long-term effects. There needs to be choice for families, a respect for values and an invocation of substantive equality in our systems.

Here I wish to close with an opening – with the words of Melanie Yergeau, autistic, from her essay, Socializing Through Silence:

“My silence is in fact a compliment. It means that I am being my natural self. It means that I am comfortable around you, that I trust you enough to engage my way of knowing, my way of speaking and interacting.

When I dilute my silences with words – your words, the out-of-the-mouth and off-the-cuff kind – I often do so out of fear. Fear that my rhetorical commonplaces – the commonplaces that lie on my hands, sprint in my eyes, or sit nestled in empty sounds – will bring you shame. Fear that my ways of communicating will be branded as pathology, as aberrant, as not being communication at all…This isn’t to say that my use of your language is always a product of fear. There are times when I genuinely want to use it, understand it, and learn about and from it. I understand that speaking is how you prefer communication. I understand that speaking is how you best learn and interact…

But the burden can’t always rest on me. I have a language too, one that I take joy in, one that I want to share. And when you deny me that – when you identify my silence as a personality flaw, a detriment, a symptom, a form of selfishness, a matter in need of behavioral therapy or ‘scripting’ lessons – when you do these things, you hurt me. You hurt me deeply. You deny me that which I need in order to find my way through this confusing, oppressive, neurotypical world.”

— From: Loud Hands: autistic people speaking, pp. 303-4, The Autistic Press.

Now, how can we respond?

Mapping Things Out

Filed Under (Acceptance, Adam, Anxiety, Behaviours, Contributions to Society, Movement Disturbance, Obsessions, Safety, Sensory Differences, Transitions, Wandering) by Estee on 19-06-2013

london-globe_1839825i Image by: Stephen Wiltshire.

I must admit time heals anxiety. After the darkness comes the light, or is it the other way around? Well, the globe rotates. As Adam seeks knowledge by going through doors, I have always needed to calm my own anxiety through books. As I think more again about Adam’s need for doors, his curiosity for bushes, dark places, paths, and in particular, the doors within buildings, I’ve been thinking about maps and a book I bought for this purpose in considering Adam’s interests – Denis Wood’s, The Power of Maps. As many autistic individuals proclaim a need to map, to visualize, and with an exceptional ability at visual memory (routes, maps), I feel that this is the next frontier for us: to learn how to make maps of our environments, to build a 3-D version of our house, and go from there.

“We are always mapping the invisible or the unattainable or the erasable, the future or the past, the whatever-is-not-here-present-to-our-senses-now and, though the gift that the map gives us, transmuting it into everything it is not, into the real. This month’s Life leaps at me from the checkout counter: ‘Behold the Earth,’ it says. ‘Startling new pictures show our planet as we’ve never seen it before.’ Inside, below the heading ‘This Precious Planet,’ the copy promises ‘Striking new views from near space show us more than we could have guessed about our fragile home…I am overwhelmed by the solidity and apparent indestructibility of everything I see around me. Only the pictures – let us think about them as maps for the moment – convince me of the reality the captions evoke…’New picture'; ‘never seen it before'; ‘new views'; ‘show us more'; each phrase insists on the fact that indeed I never have seen the planet in quite this way” (p. 5).

It reminds me of Dawn Prince when she wrote in Songs of a Gorilla Nation of how she ran to greet every room of the house over and over again. Many other autistic people have superb visual memory (Stephen Wiltshire, Temple Grandin…). Adam once drew pictures that were so “correct” in their perspective despite the fact that he otherwise has weak motor control. This leads to the conditions in which a person with various sensory disabilities can and cannot perform the same task or function. Soma Mukhopadhyay speaks of this in her books on Rapid Method Prompting and I find them true to Adam – the way a keyboard is positioned, his orientation, the differences he experiences with his vision other body movements.Things have to be set up the right way for him, and I need to always pay greater attention because it is easy to fall back on my laurels and adopt my take-it-for-granted view of the world.

Sometimes it seems that I’ve always known that mapping could be Adam’s hobby which might lead to map-making or building. He needs to know what’s behind everything for what we call “obsession” or “stuckness,” automatisms and the like. Lennard Davis discusses how we come to value obsessions, particularly the actions of artists as “obsessive acts,” like Vincent Van Gogh. Instead of invoking a moral value (a trait or characteristic as inherently good or bad, positive or negative), we can come to accept these proclivities as inherent (even if it scared the living day lights out of me). Adam needs to explore and to know as I do by finding information in books. How might I make this something that works for Adam? This is my next frontier.

“The sphericity of the globe is not something that comes to us as seeing-hearing-sniffing-tasting-feeling animals, is not something that comes to us… naturally. It is a residue of cultural activities, of watching ships come to us up out of the sea for eons, of thinking about what that might mean, of observing shadows at different locations, of sailing great distances, of contemplating all this and more at one time. It is hard won knowledge. It is map knowledge. As such it is something that little kids have to learn, not something they can figure out for themselves. ‘Educators are living in a dream world if they assume young children understand that the earth is round'” (p.6).

So why do we prohibit Adam from being free to explore, to know what and how he needs to know? How can we keep him safe while doing so? How can we fuel his interests in ways that are productive for him, and perhaps for many others?

How I Deal

Filed Under (Ableism, Acceptance, Anxiety, autism, Estee, Joy, NEugenics, Parenting, The Joy Of Autism) by Estee on 10-06-2013

So I’ve just put Adam to bed. We’ve had another challenging month – a major basement flood ruined his space where he jumps on a trampoline and has his OT equipment. It’s his space where he is king. It’s our second flood, but this one was much worse…expensive damage and more importantly, it had to be totally ripped apart. The same week, Adam suffered the viral croup that’s been going around up here. Unable to move for a week, he hardly ate and broke out into frequent sweats. Unable to explain the way he feels in detail, or to have the energy to “type it out” as I say, I panicked and took him to the doctor three times to make sure he was going to be okay. In the middle of it all, my walls were being ripped out and fans and humidifiers hummed so loudly that it was difficult to feel at home let alone relax.

Then, Adam returned to school on Monday and started biting his wrists and arms. It hasn’t abated yet – he’s frustrated when his preferred activities are ending, he’s starting puberty and my great little guy is on the anxious side to begin with. He has all the difficulties with transition and arousal as expressed by other autistic adults. It’s very difficult to write about Adam in this way, but these challenges are inevitable in life. My mother confided in me that she used to bite her friends (she won’t mind me writing about it now) because she was frustrated and angry. I expect Adam is a bit frustrated and angry too – his ripped up space, his sickness that has kept him immobile and now having to return to demands not to mention the need to express the free will of becoming an older boy. The way I deal (despite my own stress) is to bring back routine, use visual supports, gestures, counting, less words, gentle affect. In the midst of chaos, this is one thing I know to do. I also have a routine, it seems, when I’m overloaded. I get stressed out and then realize its time to shut everything down, off and focus on calm and Adam. Then, as I do, continue to support Adam’s development and learning to cope with new experiences and on patience with the things that don’t work out as planned.

I had two other thoughts this evening when I considered writing about challenges, which I am wary of doing for all the twists and turns I see stories take for some people’s own self-interest. First, I recommend everyone to read Val William’s book, Disability and Discourse: Analysing Inclusive Conversation with People with Intellectual Disabilities. Using a conversational analysis between disabled and non-disabled support workers, she analyses the subtleties of our conversations, intonations and expectations against our desire to support autonomy and how we may in fact silence and disable it, as well as examples of how it can be enabled in people with severe communication disabilities, which is my area of special interest. I was considering how I might disempower Adam’s free will and autonomy by analysing my own behaviour as his parent in how I talk to him, what my expectations are, how I may garner an answer from him. I asked myself if I praise him because he has answered in a way I expected, or made a choice I preferred. Then I asked myself (and am more aware of this now he is entering puberty) how often do I praise the choices he makes that I might dislike or are inconvenient for me? How can I encourage and support his autonomy if I only praise what I think is acceptable? These are the reflexive questions and sometimes, fine lines.

Then, I came across two recent books that mention my name and work. The first is by Michael Prince and Bruce Doern, Three Bio Realms: Biotechnology and the Governance of Food, Health and Life in Canada. I have quoted Prince especially from his book Absent Citizens: Disability Politics and Policy in Canada. In Three Bio Realms he states:

“Bio-life technologies are especially susceptible to both the ‘wow’ and the ‘woah’ reactions and instincts. In this case, the ‘wow’ factor came in the announcement itself and press coverage of it. An immediate letter to the editor of The Globe and Mail newspaper expressed the ‘woah’ reaction in intensely human ways. The letter came from Estee Klar, who signed her letter as the founder of the Autism Acceptance Project (Klar, 2010). Her letter expressed the views of the mother of an autistic child reacting to the announcement about genetics and autism. She wrote ‘the lack of public awareness about autistic pride and the many autistic adults who have helped our understanding of what it means to be ‘different.’ She expressed deep concern about language that might cast persons with autism as having fouled-up genes. Klar concluded by stating that autistic people ‘are more than their genes’ and that like non-autistic people, are shaped by [their] environment, supportive families, good education and so forth. (Klar, 2010 in Doern and Prince, 2013, 198).”

I was surprised to see this disability scholar refer to autism as a “disease” because the reality is, there is no known etiology of autism. While there are other issues that confront many different individuals with the label, the term itself is too broad and deterministic regarding autistic being and identity. I also think it prudent to cite the woah factor in a society that searches for a panacea – from pills to technology to gene-causation – in the pursuit of a (perfect) ability that I think will still experience or may create new disabilities. The way we parse humans as (dis)abled repeats self-evident ableism.

And then I came across this book Bad Animals by Joel Yanofsky who says,

“I’m recounting the highlights of a telelphone interview I just had with Estee Klar. She’s a Toronto writer and curator I learned about when I read her heartfelt essay ‘The Perfect Child.’ It’s about her son Adam whose on the spectrum. Not long after Adam was diagnosed, she started TAAP or The Autism Acceptance Project. TAAP’s mission is ‘to bring about a different and positive view about autism to the public in order to raise tolerance and acceptance in the community.’ She also started blogging about her life and about autism, which she says on her website, is not about illness but a way of being. Even so, Klar is hardly starry-eyed. She knows first hand how tough dealing with autism is. She also knows that if she were to accept all the doom and gloom heaped on her over the years she’d be incapable of doing anything, including what she believes is best for her son. Currently, Klar’s blog reaches some two hundred and fifty thousand readers.”

I do think that many of us need to write-it-out, visit meet-up groups, talk it out, type-it-out despite some days I think I should just delete everything and walk away. For myself, I’m not a great writer but I just keep doing it. I have a compulsion and I guess it is a way I can deal, and if it helps you too to read it, then I’m glad for that. I am grateful that Yanofsky in that at least he highlighted that I am hardly “starry-eyed.” I guess despite the fact I can get very down just like anyone else, I am also determined to see that sun rise and know there are always many delightful days, and I don’t believe in simple answers and a final cure. I don’t believe in easy paths and the “pursuit of happiness” – when we think it is something to obtain and possess, it simply makes us more miserable. It’s like expectation – when we hold on to it, we will be disappointed. We can’t hang on to anything (obviously not a soothing statement for people who need regularity and routine). So why am I thinking about these two quotes about the way I think about autism and my life tonight? Well, if anything is final, my concern is the finality of the existence of people we deem not worthy to live because they do not fit an economic paradigm and who are considered burdens on society. The thrust of my work today deals with this and how we can support autistic people, and to reconsider how we view autonomy and independence as yet another path to normality (and oppression). Normal doesn’t exist and it never will for many of us, and for most, it is a mere delusion. Hmmm…delusion. A way to survive the ultimate reality? Think about it.

The Autism “Spectrum,” Assessed Identity, and Supporting Access…some thoughts

Filed Under (Acceptance, Adam, Autism and Learning, Communication, Computing/iPad, Identity, Spectrumism) by Estee on 16-05-2013

This photo is of Adam with his Grandma.

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.

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.

The Party

Filed Under (Acceptance, Adam) by Estee on 22-04-2013

Adam had his 11th birthday party this past weekend. He has grown so much the past year, like a bamboo shoot – thin and taller. I always throw a party for Adam…it is our normal, perhaps your “quirk-fest.” No matter, it’s our world; somehow we make a space for ourselves.

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.

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:

In Support of Autistic People

Filed Under (Acceptance, Autistic Self Advocacy, Communication, Law) by Estee on 09-04-2013

Here is one video I want to share in support of autistic people with Larry Bissonnette and Tracy Thresher. If you haven’t yet watched Wretches and Jabberers, you can access the entire movie on YouTube.

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:

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?

The Oppressive Charity Model: Reconsidering Autism Acceptance

Filed Under (Acceptance, Advocacy, The Economy of Pity) by Estee on 04-03-2013

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

Decolonizing “Autism Acceptance”

Filed Under (Acceptance) by Estee on 11-02-2013

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hermes

Filed Under (Acceptance, The Autism Acceptance Project) by Estee on 10-02-2013

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

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

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!

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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.