My Comment on CBC Synesthesia Story

Filed Under (Synesthesia) by Estee on 31-07-2013

Neuroscientist Dr. Tom Schweizer, here in Toronto, discuss synesthesia in a stroke patient with CBC’s Michael Serapio. It’s a cool story, but one that alerted me to the ways in which the neuroscientist and reported began to frame the phenomenon. Click here to listen. This is not the report I heard with Michael Serapio, but may give you an idea. In that report, the doctor stated he didn’t expect to meet anyone else with synesthesia in his lifetime. The report in the link is not entirely similar, but it’s what I could find for you to at least listen. The comment below reflects the language that was used in the report I heard to frame the phenomenon.

Here was my comment:

In this report, I was alerted by two ways in which this story was framed. The first was the purported rarity in which people experience synesthesia. I was wondering if the researchers paid any attention to autistic individuals who experience it (and report about it) fairly often – Tito Mukhopadyhay, Amanda Baggs…there are many more; the second point deals with the ways in which this report discussed synesthesia on the radio using the dominant discourse of medical pathologization – as something to recover from and a “cross wiring” in the brain. This is of course a metaphor to discuss something that falls outside of the normative margin – it’s not literally a “cross wiring” or a mistake or an aberration. As a critical disability scholar, I like to call attention to how we conceptualize the brain and how we persist – even post-Susan Sontag and Thomas Szasz – to use metaphors of illness and aberration. This shrinks the space we need to accept all different kinds of brains and bodies that exist in which we refer to as neurodiversity.

Communication as a Human Right

Filed Under (Aides and Assistants, Communication) by Estee on 24-07-2013

Every morning since returning from The Communication Institute in Syracuse, Adam has been typing. I’ve realized that he actually doesn’t need the levels of support that I thought he did, when given the right equipment at the right angles, and when I present opportunities for communication that are for now, more constructed. I don’t tell Adam what to write, I’ll suggest it. I’ll begin by asking him to get a book we can read or talk about together or he’ll get a toy on his own. We’ll start to write a story – this morning we wrote one about a green dragon. When he seems stuck, I’ll say we’ll write the story together and I’ll write a line. We’ll read it together, then he’ll write the next line. When he types for things he wants, he is a two-handed typist now, and reading his own sentences assists with his verbal speech.

For someone as literate as Adam, as are many non-verbal autistic children, often labeled with hyperlexia when they were very young, with-holding communication technologies with the proper teaching and support people who are trained becomes a discussion about human and legal rights. I dread thinking of all the days many autistics are taught to label and verbally “mand” without access to other supports. People, we’ve got to change the way we rethink literacy and autism, AAC and supported typing!

In the meantime, I’m writing a paper on this dealing with the discursive tendencies to think of communication as normative, and typical language is, but also how autistic individuals have a right to this access to level the playing field.

“Is it normal to use only spoken language as the accepted currency for exchange of interests? It is certainly usual or normal for talkers to talk, but if you are not a ‘talker’ you might use other methods to converse.” (Lawson, 2008). I’m certainly aware of the work it takes for Adam to translate his experience, if you will. I’m in no way undermining it by suggesting that to write and type is the only way to be a person. He is already a whole person. He just lives as a minority in a majority world of talkers and he has a right to communicate in his own language as much as is his right to be able to have access to translation and interpretation. When I think of support workers for communication, I think to my lectures, where a deaf individual is supported with two translators who must translate normative speech to deaf sign and vice versa. It takes two sign language interpreters to support this person in a three-hour class.

Why should the standard be any lower for the non-verbal autistic person in terms of support?

Intelligence Redefined

Filed Under (Communication, Intelligence) by Estee on 20-07-2013

Yep, yep…that’s how I felt reading a review of Scott Barry Kaufman’s book Ungifted: Intelligence Redefined. Dr. Kaufman, a cognitive psychologist from New York University claims that he was dismayed by IQism: “I would look into textbooks and look at these charts that said if your IQ was this score or your IQ was that score, these were your chances of obtaining various things in life. I just didn’t accept it.” (Globe & Mail, Focus Section, p. F3, July 20, 2013). He cites our definition of intelligence conflating with speed and efficiency. Yet, a question I always ask myself in reading such books is if it is achieving recognition and transformation in the way we provide opportunity for all people.

Certainly when I was growing up, IQism was hammered into us – our fates seemed sealed by childhood – supposedly. Poor at the time in math (primarily because of the way it was taught – I graduated an Ontario Scholar from high school after finding the right tutor in math), I remember my grade four teacher announcing to the class that I was a failure. I’d like to tell her now that I’m a doctoral student, and how long it took me to get here, and how devastating her words were for me that I remembered and had to fight against for the rest of my life. Subsequently, of course, I had other teachers who felt I should be a writer, or an artist – thankfully. The question I have now is how these transformations can take place for people with the autism label in recognition of disability and various intelligences. Again, what kinds of support must we all provide to enable autistic rights and well-being? When I say rights, I believe education is but one of them.

While we all work having to prove ourselves throughout our lives, I believe it is more exhausting when a severely disabled, particularly a person with a communication impairment and movement/sensory differences, is confronted with daily prejudice about their intelligence. When it takes a long time to get out a few words by typing or speech, you are more discriminated against. Stephen Hawking can only type about twenty words per minute and we speakers utter about 157 words per minute. In other words, there’s a lot of work that goes into having to communicate for many people, and by the time people finish a basic greeting (unless it is preprogrammed into a device) most people will have walked away.

C.F. Goodey

I’d highly recommend that if people are interested in the history of this prejudice, and how we’ve come to view intelligence in terms of speed, to read C.F. Goodey’s, The History of Intellectual Disability. It seems to have informed Dr. Kaufman’s work, and this is a promising step in shifting the manner in which we support people’s potential throughout their lives, for as Kaufman writes, “Potential isn’t something that’s fixed at birth. Potential is a moving target.” While I’m not sure about his concept on ability grouping – I’m always wary of the power imbalances at work in our society and how we favour some abilities over others – I do support the idea that people have many different types of potentials and types of contributions throughout the life-span. In summary, this kind of popular book may create more dialogue about how we are coming to understand intelligence, but our challenge is to transform the way we accommodate it.

“We Are A Critical Mass of Wretches” – Larry Bissonnette

Filed Under (Acceptance, Adam, Communication, Computing/iPad, Development, Inspiration, Joy, Uncategorized, Writing) by Estee on 16-07-2013

I am blissfully tired after our second day at the Communication Institute in Syracuse. This is Adam’s first autism conference and all that stuff that was happening beforehand has abated. He is happy here and spending time in a workshop in the mornings learning more skills, and sitting in talks for the rest of the day, and taking small excursions for his breaks. He has watched other typists here intensively and this always inspires him to do it. I’ve learned that he needs less support than I had been giving him, given the right tools, keyguards, anti-glare screens… I’m learning about iPad apps that will change his life and change the way we “do” school…not that most schools (most using ABA/IBI for autistic kids) in Canada understand or provide as of yet. Adam can’t be normalized but he is a very bright, very autistic, very wonderful and intelligent person.

One thing that really gets my goat, however, is the notion that there is no real purpose in teaching autistic people how to type, use AAC, or engage in an academic curriculum. It blows my mind that these things are under threat for autistic people – that communication tools risk being taken away in favor of verbal behavior, which, of course, harkens back to Oralism – when the deaf culture were denied sign language and were forced to speak and act in normative ways. We can look at Victor of Aveyron (1788-1828) for this under the tutelage of early behaviorist Dr. Itard who later abandoned Victor (although Victor could read and use text). Alexander Graham Bell also favored Oralism and it existed well into the 20th century. Today autistics face a kind-of Oralism in Verbal Behavior programs. It’s not that we don’t want our kids to speak if they can, but most autistic folks can’t speak for a full day or not at all and need other reliable sources of communication. These tools for autistic people are a right as sign language is for the deaf, and considering we are asking autistic people to communicate normatively, and autistic people say that they need this means to articulate their thoughts, it’s a complete mistake to even think of taking this away from people.

Society, in the general sense, doesn’t find that many autistic folks are economically productive enough to invest in them, so instead they are called the burdens on society. I’d like to invert that notion of what a burden it is for all of us to be underestimated and only be taught for the purposes of being the cog in a corporate wheel. May I suggest that we all be creative in thinking about the various kinds of purpose and contribution that humans can make, and rethink “productivity.” Then, I’d like to suggest that parents of autistic children who want their children to be accommodated, educated and literate as autistic people to adopt the mantra of those who doubt our children, “so what?” In other words, I think we need to develop a sense of entitlement when it comes to supporting autistic rights to communication tools, access and accommodations. We have to say “so what?” to being autistic, or our children being autistic. It’s a material reality that normative culture is a majority culture to which autistic people work so hard to adapt, and I think of the terrible injustice it is that autistic people have to prove their value and competence every single day of their lives (and often get held back because of it). I think the mantra “So what?” helps me to keep going against ignorance when people ask me why bother educating Adam as opposed to remediating him (before the right to participate or inclusion) or just teaching him functional skills. We are here, literally, among the “wretches,” and there are quite a few here, folks. The critical mass is growing and we ain’t no epidemic. I don’t care what you think of Adam and his going to school or later, university. Just don’t take away his right to it. As for the wretches, they are doing a magnificent job in advocating for this right, and we have an obligation to support them.

Now I will turn my post back to Adam. He was proud of this little story he wrote today which was read aloud to the class – I can’t remember when a teacher presented Adam’s work to the class for such a long time now:

“One day two leaves fell early in the morning. They weren’t happy because they wanted to stay up on the beautiful branch. A nice boy called Adam found them and stuck them up for the rest of the day.”

A few minutes later he typed to me: “Real useful ideas.” Then, “The joy love you mom.”

Thank you my little one. I am your devoted wretch-in-arms.

What Adam Said This Morning

Filed Under (ABA, Acceptance, Adam, Communication, Movement Disturbance, Sensory Differences) by Estee on 11-07-2013

Adam and I sat on the stoop as usual this morning for his bus to camp. Yesterday, Adam was content and happy and then his assistants reported another sudden biting incident, to which Adam didn’t seem to remember. It lasted but a few moments, then he happily moved along. Of course, I’m in a newer territory now with his, new concerns and am back to re-reading.

When I asked Adam about remembering it, he said “no” in several formats, including pointing to his chart, typing it out, and also saying it (which came first). He was happy and contented last night, jumping on his mini trampoline in the basement, which is now partially repaired after the flood. After I gave him his ten minute warning that it was nearing time for bed, Adam came upstairs.

This morning, though, my heart broke a bit, but I am also determined to do my best that Adam has a positive self-esteem. Let me preface this by stating that when a person like my son doesn’t speak very much, people don’t tend to listen as they refer to speech as “psychotic” and nonsensical. I never take Adam’s words as such.

“I don’t know anything,” he mumbled.

“You know lots of things and you will learn lots of things. You are really smart,” I replied.

“Teeeea-cher,” he sang melodically. Then again, “Teacher, teacher.” He climbed into my lap to be cradled.

I’ve asked his ABA school of late to teach him to his age-level and invoke the Ontario Curriculum, to which Adam is entitled, and they have agreed. I am devoted to making sure that education is Adam’s right. I am working this out with Adam’s team which may include part integration, part home-school, getting out more into the art gallery, the museum (he enjoys such places) and the programs he has loved so much and integrating this into his own writing. In Canada, there’s little option but to make our own path at the moment, and families have a right to choose what suits their children best. In Adam’s case, he requires support, and this is also his right in order to participate in his community in the manner that he wants, needs and is able. It is great when teachers understand these complexities, and I encourage everyone to continue to learn outside of the behaviour paradigm, and to listen to autistic people. (I think you can sense how concerned I am about what is reflected back at Adam in terms of his person-hood and self-esteem as an autistic person – a complete and whole person).

Post-Blog Comment:

Thanks to an email that pointed out something important to me which I must write here – in it, the person mentioned that the Ontario Curriculum is “useless.” I want to extend how I appreciated the comment as important and hope more comments will come. My comment to extend on that one would be that I feel that education is a right, but the manner in which that education is delivered to Adam must be customized. He still has a right to it, and the reality is that’s what he needs to fulfill to move on to higher ed if he desires it. There are many tensions at play here – my own personal experiences as a normate which must always be questioned; the changing needs and nature of education overall; the normative linear developmental model that represents the mutually supportive notions of social and neo-liberalism; and this quest for a specifically autistic education that fits Adam’s learning style and abilities while also providing him with opportunities to contribute to society as an autistic person – and this is the ultimate challenge when society doesn’t value people with severe disabilities.

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.

Scary Rain

Filed Under (Adam, Estee) by Estee on 09-07-2013

Go Train Under Water

Adam started camp and he has become content again, as I’d hoped.I’m tired around here after another flood in Toronto. Loud thunder and lightening struck just at the moment Adam’s bus came to the house. More than a month of rain dumped on Toronto in an hour.

“Scary, scary!” Adam said, reluctant to leave the bus.

“It’s okay Adam, just come now,” I urged, trying to sound calm as I saw the water billowing over the drain in my driveway, about to flow into the garage. So many things to attend to, but keeping Adam safe and calm is my top priority…but also keeping his basement dry keeps him calm…oh, what to do?!

Although we repaired the basement and Adam was so happy about that, a bit of water came in yesterday, but not nearly as much as the big flood several weeks ago. Then, our power went out and I was so grateful when my handyman saved us with a car battery (I hadn’t even thought it was hooked into the power and didn’t have a battery backup). We hooked that to the new sump pump. As night fell, I was waiting for more rain while Adam was asleep, sitting beside a candle and my transistor radio. I waited to turn the battery on, but alas, no more scary rain came. Finally, I fell asleep with the window open, attentive to the sirens and then, sudden quiet. At 3 a.m. the power came back on and I was only slightly disappointed – I loved the quiet but was glad to be able to re-plug in my sump pump to the power. More rain is coming for Toronto today and tomorrow. Considering that people were stuck on the Go Train until 1 a.m., rescued by boats, and that I saw basement flood trucks running up and down my street last night, I thought that we did all right. Now just some more tweaking, a generator, another sump pump, a deeper well… My water house still needs work.

ads
ads
ads
ads

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.