HELP! People in Norway Need You!

Filed Under (Charity, The Economy of Pity) by Estee on 27-11-2012

Someone in my class pointed me to this video. A way of the “other,” othering. ;)

On the iPad and “isolation” in The Toronto Star’s “Autism Project”

Filed Under (Communication, Computing/iPad) by Estee on 14-11-2012

I just want to make a brief comment regarding The Toronto Star’s reference to how iPads are changing the face (or might) of the education of individuals with the autism label. Briget Taylor was quoted as stating that the iPads could increase isolation of children with autism. I want to break that down a bit. I’m not sure how that quote may have been taken down by The Star. Here are a few things off the top that jumped out at me immediately.

Before I do, here’s a brief background that has shaped my view. Prior to the advent of the iPad, I began teaching Adam how to type on label makers, computers and the Alphasmart Neo which is simply a lightweight qwerty board with a small screen. Teaching Adam how to type with support was difficult for all kinds of reasons (many of them motor-planning ones), but it has enabled his emerging independence. I need to keep learning how to support him and I’ve been at it for a few years now. I also take the advice from others to help me and we share information. If you click on technology and communication tags on this blog, you will see some of my posts which talk about this more. It’s a process.

The iPad (and computers and the Internet prior to the iPad) has enabled”voice.” That word is used very often because we don’t have a better one as of yet. Many people see it as problematic as “voice ” implies capacity, intelligence and competence (and independence) coming through the verbal. The deaf community has made plenty of references to this and it is still used in Verbal Behaviour today — “we have to teach him the power of words,” in terms of discussing ways in which to motivate autistic people to speak (even if they cannot). So, we might want to consider this in terms of autism and social justice and human rights overall, but this is not what today’s post is going to talk about today.

When thinking about the iPad and how to use it as a teaching tool, and an enabler of self-expression, how can we consider it as a supportive of autistic agency? I put that question up because I am worried it will be seen as a panacea for creating nomates, and we have so much difficulty accepting (or understanding?) human difference.

The idea that the iPad will isolate autistic children as Ms. Taylor was quoted, presumes that autistic people are, or want to be, isolated. It harkens an “ideal” way to be human — to be an adept social (typical) communicator. It also builds upon the notion that autistic children are “locked in their own world.” I think we have to be very careful in talking about autistic people and locating ourselves while we do. When making statements like that we are talking from a different standpoint. When I write about disability, I am also writing from an outsider standpoint with a view that I need to always question my own thoughts and ideas about what it means to be human.

I do think teaching social skills, among other skills is important, but it’s not an end in itself. We still have to address autistic difference which also can mean different ways of being social. Sometimes, Adam needs his time alone on his iPad. He needs reprieve and he is teaching himself by discovering. When he’s had enough, he can also be very social, in need of people. He loves to play. Like all of us, we need down time, right? Further, autistic individuals who also use programs like Second Life, the blogs and other self-advocacy organizations to socialize. Now we are all on Facebook (okay most of us) and other social media. As autistic people have written valuable books and blogs that have helped our understanding, I would like to see schools hiring autistic people to enable education.

So, I don’t think the premise that autistic children will be more isolated is a reason to limit iPad use, necessarily. That premise is used by some university professors who don’t want screens in their classrooms. Based on limiting screentime-arguments, how could a person with a disability who needs to use a computer be able to participate, attend university? Isn’t that isolating? That is what concerns me with the quote as written in The Toronto Star.

Instead, how can we consider how to use the iPad to enhance learning opportunities for autistic children and further, how can we transfer the learning on the screen to learning in real time and space? Can autistic people shed some light here? What is a preferred autistic social style or “space” (I assume it is varied)? I find socializing sometimes exhausting. I can imagine that for many autistic people, it can be much more difficult. Now that we have an amazing tool, we have to still do the work to learn how to teach to autistic strengths with it. We have to recognize and respect the differences. We have to be supportive and we need autistic people to help us.

~~
Omom22 has commented on The Star and iPads here.

Talking About Autism & Building Community

Filed Under (Autism Theories, Autistic Self Advocacy, Community, Language, Media, Research, Uncategorized) by Estee on 11-11-2012

How can The Toronto Star and by many autism charities address the diverse needs and views of the autism community? My concern is that there is little (if not any) of critical disability perspectives. Typically, journalists run to autism “experts” with medical backgrounds and this becomes the only lens through which we have come to understand and view autism. Autism, a classification imagined and made by humans, has become reified. This essentialist view is the most troubling for our community.

My questions of late are: How can we facilitate a respectful discourse among autistic people with different experiences? How can we include non-autistic family members into the dialogue who are also stakeholders, but whose very involvement in autism charity (which directs research) can be considered based in positivism and reflective of an imbalance of power? In other words, concerning the latter, as non-autistic parents and medical “experts,” we impose a concept of normalcy that we are discovering through autistic communication of experience that, in fact, is different from how many of us non-autistic people view things. We (typicals) consider our viewpoint over and above the experiences of autistic people. We produce knowledge that is language-based and that is taken as more true and accurate. I’m also very curious how we all appropriate such impositions upon our own identities? For instance, if you are given a narrative about yourself (autistic or not) and how you must be, do you then turn it inward (this has also been refered to as internalized ableism or oppression)? How does this effect the questions posed here?

Autism charities, researchers and news media need to consider these questions to reflect the broader autism discourse, even when many views run counter to their marketing campaigns and economic research interests (or should I say, especially when). By doing so, we may discover ways to better address the real needs of autisic people specifically. I’d like to see autism charities take up this dialectic discourse. It doesn’t have deadlines or meet fundraising goals, but this is what our community needs the most. I get concerned when autistic individuals are folded into big charities largely populated by non-autistic interests.

Feminist research has pointed to a constructive confrontation. “bell hooks (1990) declares the need for ‘meaningful contestation and constructive confrontation between different perspectives and urges the creation of safe spaces where critical dialogues can take place between individuals who have not traditionally been compelled…to speak with one another.”(Hess Biber, Leavy, 2007)… constructing a space that is open to dialogue across… voices are granted equal air time, we actually build community…” This comes from feminist research methods which has changed the way we have been able to do research. Both feminist empiricism and emancipatory methodology can provide useful examples to the way we approach autism research and community.

Reference:

Sharlene Nagy Hesse-Biber & Patricia Lina Leavy, Feminist Research Practice, London, Sage Publications, 2007.

If you are interested in a Media Analysis of Disability, See the Research done by Disability Rights Promotion International.

Exporting The Autism Genome Project To China

Filed Under (Newgenics, Research, The Autism Genome Project) by Estee on 10-11-2012

Tagged Under :

The Toronto Star has dedicated a series of stories about autism. It’s cheaper to hire a scientist in China — about $16,700 a year reports the Star’s Tanya Talaga. Autism…the “creeping, silent epidemic,” (yes that language is still being used which should tell us that the reporters aren’t reporting from a critical perspective), and it “needs to be cured like cancer.” Bring on more puzzle-washing – Autism Speaks still runs its campaigns like the very controversial cancer charities (aka: Pink Washing).

There’s no mention of how the autism category keeps changing with the years and changes with society’s fears and imaginings. There’s no interviews with autistic individuals (yet), and noon from the disability rights movement to support autistic people. I’m hoping they will come out to support us.

Like our economy, we focus mapping autism genes now to China — the company BGI has apparently very big machines running twenty-four hours a day, seven days a week to break down DNA. BGI has “mapped the genetic code of the giant panda, a grain of rice, a silkworm, soy, tomatoes, chickens…” Dog gone it, let’s find the hundreds of genes to cure autism and then the economy will be well again.

I mean, isn’t this what it’s about? It’s certainly on our minds with the “fiscal cliff” just ahead. “Most children with autism are rejected by kindergartens and schools…staying home becomes the only option for a large majority of these children…by leaving them on their own, these children lose all chances of developing their potential talents that they originally might have,” reports Tanya from the Star.

Let’s break that down. Yes, access to schools is a big problem. The Supreme Court of Canada just ruled that public schools now have an obligation to accommodate to which The Globe and Mail editors reported would “bleed” from other programs. The Globe editors stated that the Supreme Court “overstepped their authority,” but I wonder if they would have said the same had the ruling be in favour of segregating children with special needs. After all, the Toronto District School Board just cut its special education programs and Educational Assistants as a cost-saving measure. Children with special needs are expendable. It seems children with special needs are a huge economic burden, or so think the Globe editors and a whole bunch of other people.

Next, I’m wondering about those talents, after all. The Star says that autistic children have “potential talents” that they might “originally” have. Is the writer suggesting that autistic people have talents if they were to become normalized or that autistic talents in and of themselves are not being nurtured and educated? Is the journalist accepting that autistic people have any talents or potential? If so, it would go against Globe Editor notions of talent and shall we say, productivity — so central to our epistemological understandings of shall I put it, the industrious person serving the economic well-being of the state.

Finally, and I will be writing more posts in response to The Star’s one-sided, unbalanced reporting so far, is this then the reason to cure autistic people; because it’s hard to get into schools? This for me is the most frightening absurdity of the article. It is the notion that the blame (and we’ve tried to blame mothers, and now it’s the old fathers), on the individual body. The onus is on our bodies to change, not on society to change it’s attitudes and systems to support autistic individuality and yes, potential — body-politics indeed. Further, the fact that we’ve exported this work to China where people are worked to the bone in huge factories, does nothing to soothe me or make me happy about finding the autism genes. It points so strongly to the fact that we have exported to China the creation of the great Newgenics machine, and we do it gaily. Think of China and sex selection and then to the issues that if say, autism is found to be more common in boys than in girls, that would make sex selection likely, okay.

I think that the autistic self-advocacy movement and allies have to do something much greater now . We are doing the hard work for sure, but these large spread gigantic projects without equal critical reflection makes me worried and I hope you are too. I think we have to gather to run a critical reflection campaign devoid of propoganda. We want society to not just see us and help us for who we are, but consider our rights to be who we are and to have assistance. First, we may wish to begin by using The Autism Project as a platform as the creators of the autism “problem,” not autistic people. Autistic people and families require a set of complex supports and understandings also because not every autistic person or family is alike. I would like to ask reporters to do a finer job of doing real, even emancipatory journalism and not spectacular reporting from a neurotypcial birds-eye view in the name of selling more papers.

Upcoming in The Toronto Star’s Autism focus will be topics on “diagnostic odyssey, navigating school, transition to adulthood, mothers on the spectrum, ageing with autism.” We’ll soon see how the stories are covered, and I’m sure there will be stories that we can all relate to. I want you to watch, however, for who and what will be blamed in order to solve the autism “problem.”

A Short Blurb on Language and Citizenship

Filed Under (Language, Research) by Estee on 09-11-2012

Reading, reading. Writing, writing. I can’t believe I’ve almost finished a third of my M.A. and applying for Ph.D. We’ll see how all that goes. In the meantime, Adam and I feel co-joined. What do I mean? Well, as always I adore him. I need to put more of my own words to how I may move around him and how I see him move around me, how we can make each other happy (or sad). I never stopped joining him, nor him, me. Is this simply a mother’s love talking? The nuances of our communication — this is what I try to put words to. My language doesn’t do this justice. In lay terms, we interact with our surroundings, we “dance” around each other in a type of language. What is language anyway? “The forest thinks in trees,” I’m reminded. I’m not a philosopher, yet find myself needing to enter. I’m trying to resist names-of-things, for things; to reify. Adam doesn’t do this. Why must I?

I stand and wait in a grocery line. I hear people talking about the autism spread in The Toronto Star today. I haven’t read it yet. I will. Like a car accident I am compelled to look. We are teaming up with China on autism science? What will genetics do to one’s right to live and be? How will this shape us? “That’s great,” I hear someone say. I’m not so certain it’s great. Viscerally, there’s something wrong. I feel it, and it’s not with Adam, not with autism. There is something amiss with how we value, who we value, who gets to value… people.

I am intrigued with Barnbaum’s analysis of theory of mind theory. I am still thinking about it in creative terms — the way I feel and interact with Adam, typical English language failing me, of course. Is it possible to create a new language with my translations and his?

While the following premise rests on the theory, I feel it can be also applied in general terms. In other words, I feel that people have a right to be disabled. Everyone has a right to equal citizenship and we need to unpack how we arrive at capacity/competency citizenship-notions because at the moment, autistic people are not considered (or treated as) equal members of society:

…persons with autism are individuals, with personalities and preferences just as varied as those of the non-autistic population. It is a similar moral wrong… that persons with autism should be valued because they make non-autistic people better…to foist a “cure” on a person with autism fails to recongnize him as a person in his own right, because that cure assumes that the person would be better off cured. There is no reason to assume that once theory of mind is restored that an adults with a mature set of prefences would undergo a personality shift such that he would suddenly come to enjoy the world of mentalizing. If a member of the non-autistic population were confronted with a comparable option — ‘Let us change you fundamentally, and trust us, you will come to love your new life’ — we would find this a horrific violation of that person’s autonomy. Ther person’s integrity as an autonomous individual would be compromised…curing cancer or restoring sight to the person who was blind would not fundamentally change that individual qua person. But restoring theory of mind would…An ethic that requires the non-autistic population to respect the differencts of the autistic population places the burden on the non-autistic population.” (Barnbaum, 2008).

Reference:

Deborah R. Barnbaum, (2008), The Ethics of Autism, Bloomington: Indiana University Press, p.206.

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.