What’s the Problem Represented to Be? Autism, School and Policy Musing

Filed Under (Government Services, Human Rights, Inclusion, Institutionalization, Policy, school, Single Parenthood) by Estee on 22-04-2015

As Adam school closes, we have our Plan B which does involve his acceptance into a high school language arts community in a school devoted to social justice. Adam is in grade seven but will jump a grade. Some might say this is Ironic, no, for a child who some therapists said couldn’t understand, let alone speak fluently? But it won’t all be in school. In thinking about the schools, policies and systems that are currently in place for autistic people in Canada, I came across the following:

“Heidegger says we are accustomed to having conditions given so that we can plan out definite results. We are used to being able to plan, to calculate, and when we cannot do so, we feel out of our depth…” I fell onto this while reading “Our Dissertations, Ourselves” (2014) but it has another meaning for me. I have promised Adam (and myself) that I would never put Adam into an institutionalized setting/school or group home. The IBI program that I strongly critique is anchored in calculations and definite results or outcomes, even when they are built on false promises because of false assumptions/premises. We want to depend on others to much of this for us… to solve a “problem.” In this, I like what Carol Bacchi asks “What is the problem represented to be?”

This is the core of how systems and autism policies are built.

I think of it this way, we really shouldn’t launch into parent-hood without recognizing that no matter who the child will be, there will be challenges, systemic and otherwise. The neoliberal system also in which we all live works against children by suggesting that everyone can work (and this is also disguised as fulfillment and leisure which often creates a tension with domestic work). I admit I resent this tension. Parenthood requires all of me. It requires that I work outside of existing conditions neither serve Adam nor our values. It is not easy to work outside of systems, or meander in and out of them as we see fit. But right now, we feel it’s necessary.

Reference:

Christine Sorrell Dinkins and Jeanne Merkle Sorrell (2014), Our Dissertations, Ourselves: Shared Stories of Women’s Dissertation Journeys. Palgrave Macmillan

With Tidings of Struggles and Joy

Filed Under (ABA, Acceptance, Activism, Communication, Community, Critical Disability Studies, Discrimination, Human Rights, Inclusion, Joy) by Estee on 29-12-2014

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This is a short post to wish all of you a happy holiday and New Year. Adam and I have had such a wonderful year – his wish now to write a book and all that progress with his typing. Finally out of the clutches of autism schools that haven’t realized Adam’s abilities, Adam is now doing his grade seven curriculum. Thanks to everyone who has supported us this year! It has been a joy for all of Adam’s family and closest support staff to witness Adam’s happiness and self-esteem that is noticeably changed since he talks more with friends and family by typing.

That said, despite proof, I am dismayed with “autism programs” here in Canada and the lack of activism we engage in as families. Compliance and normality still propel autism programs here, and rape a family’s emotional and financial well-being with the empty promise of recovery, cure and a semblance of “normality.” I ache for families and more so for autistic children – many forced behind closed doors for hours a day in “therapy.” This is no quality of life, no joy. This is child-abuse and unless we begin to identify the violence of these programs, little will change. When I think of a New Year, I spend most of my time thinking about the work that needs to get done. I think about what my obligation is as Adam’s parent and it’s not about therapy.

It is our obligation as parents to understand the autistic community that is comprised of other autistic people. We are much more obliged to read and try to understand the experiences of autistic people for the positive development and growth of our children. The autism agenda (that is research and policy) is set by non-autistic people who are telling parents that is their obligation to do everything and anything to cure their autistic child – this spans from starving them from certain foods so they appear less autistic to forcing normalizing therapies. Even if in a situation (because true inclusion and acceptance is far from achieved in our country) where there seems to be little choice at but to put a child in an autism school (typically with ABA therapy), a parent must do everything to find a learning and social situation that supports difference (and I realize that using that term risks totalizing) without the propensity and impulse to normalize. Sure, these are loaded sentences that I’ve spent since 2004 working through (you can read them in the blog), but they need to be because the situation is not as black and white as most media outlets (I need to write that letter to the CBC!) and research outfits will have you believe.

As a parent, I also have to pick my battles because there are so many to be had every single day. It is the reason why we can’t write about every injustice everyday here on this blog (although I think about it). Instead, I am working with Adam and his team on delightful things – his words, his thoughts, and yes, his pain that he cites within a society that doesn’t accept him. Even though that incites me, Adam is so full of love and acceptance for that very world in which he wants to belong. I’d like to think that maybe I’ve had a bit to do with that. Exposing Adam to autism conferences where most autistic people go (as opposed to the ones where researchers and parents go), has changed Adam in profound ways. I consider these to be in part, my parental obligation to him.

But speaking of battles, at the moment, I’m challenging a ski program here in Ontario that seems to be practicing a qualified inclusion. Qualified inclusion means that an autistic person needs to be independent before the right to participate. I’m trying to explain to these folks the meaning of what I call for now, “enabled participation.” This suggests that many folks require their own chosen support staff (chosen and employed by the autistic person) in order to participate in ways also chosen by them. This process takes time. Consent and choice is a multi-faceted process – not necessarily a yes or no answer. When someone is challenged with verbal communication, they require many opportunities to respond to how they want to live their lives. They require people who believe in them and who know how to support their movements and communication.

When I mentioned to this ski program that excluding autistic people from autism programs is discrimination because it is qualified on the concept of normality, I received an email that Adam would be accepted on the ski hill. Since then, however, I’ve received an email that Adam will “be assessed.” At the moment, those criteria for assessment remain invisible to me; they have not disclosed their terms and I may only assume that independence is top of their list, even though they have accepted him with his assistant on the hill. Such assessments need to be fully transparent. When they are, we have the right to critique them (because we know that all assessments are based on discrimination and bias – that only verbal, normalized ways of participation and response are acceptable). I am not only a parent, but a scholar in this field being talked down to and to some extent, manipulated. One would think that many-a-program, to avoid human rights complaints in the future, would tap my knowledge of policy and law and how to better “the autism program.” Autistic folks and some folks working in Critical Disability Studies are able to provide this input for policy-making and this needs to be harnessed. But…

This is the struggle that we all face as parents and we have to understand that the rules are set by non-autistic people that want to make systems that befit them, not the autistic person. Remediation, cure, recovery, normality, independence – these are NOT criteria for inclusion. This is not substantive equality in the legal sense. Substantive equality enables the disabled person in their disability to participate as they are. So, I’ve targeted a battle, a struggle. It is a frustrating process to trouble such organizational policies, but this is are real job as parents. Don’t buy into the rubbish that autistic people are trouble and the “problem” of autism must be eradicated. That’s a backwards way to look at the issue. Instead, as parents who have long-supported damaging policies and educational/therapeutic models that autistic people have long been critiquing (as they have been hurt by them), it is time we turn our minds and our hearts to supporting our children, no matter what age, to change the rules that have long excluded them.

To that, I want to end by reiterating Adam’s Christmas wish that he typed on Christmas eve: “I wish for love and open hearts.”

One must also believe that open hearts may open doors too. Wishing EVERYONE some joy admist these continued struggles.

What’s Going on In Canada? Autistic Children in Isolation Rooms

Filed Under (Activism, Human Rights, Law) by Estee on 22-11-2013

The CBC news story on an autistic child being sent regularly to an isolation in a B.C. school was aired this morning. The student, who is “mildly autistic” (she can speak), is sent regularly to a windowless room. In polling the other young students if she should go, they responded with a resounding yes.

So what’s going on in Canada? Recently, the institutional “residents” of Huronia were awarded for their incarceration and imposed sterilization in Canada. Schools regularly remove students from classrooms. Despite the loss of the Auton case, ABA is the only “therapy” in Canada that attempts to normalize the autistic child. Negative reinforcement is still used in some of our government-funded autism centres. So while Auton didn’t win, the ABA movement has. There is no choice for autistic children in Canada. The Harper government has an agenda of ridding autism from our country. Money is spent from our “top” charity Autism Speaks to cure autism and when those same ABA schools and communities apply for funding for a $5,000 whiteboard, those grants are denied. As Ari Ne’eman writes in Loud Hands Speaking, the charity Autism Speaks does nothing to support autistic people and the communities that support them. Those same walks in our communities, with the parents who give thousands of dollars to it, get nothing from that charity in the way of supporting autistic well-being, lives and options. Despite deinstitutionalization, the rehab and medial model is supported to keep incarcerating people with disabilities. There is a human rights model, and those in the rehab and educational industries would be wise to start reading.

In the meantime, the B.C. school board seems defensive about its position. Policy-makers are deferring and the autistic girl is left in limbo and to the devices of a system that remains intolerant of her inclusion. There is an air of defense in this position. This, let us be reminded, however, that this is an infringement of the Canadian Charter of Rights and Freedoms and the UN Enable on the Rights of Persons with Disabilities. It is against the law as more cases set the precedents (it is still an hermeneutical exercise it seems, but the principles apply); we have to keep working. The school system, which only cares about those who conform the best and get through the fastest (it’s a business model of course that doesn’t care about those who require support – it uses the cost-benefit/burden models), supports this marginalization. Most disturbing is the trend of adults who poll young children, or indeed condone this isolation of their autistic peers. These adults need to be questioned, their attitudes need to be changed, and in most cases, the only way to implement change is to bring this to the courts.

And where will our Autism charities be in incidents like in B.C.? Those who continue to support the amelioration of autistic people in the guise of acceptance and help? There is a predominant medical and libertarian model that we urgently need to discuss. It makes sense when government money supports economic solutions, that is, proposals to make children normal contributors to the market economy. Of course, these are just proposals. Work projects will only work when autistic people are respected, their rights upheld and dignity in place. As in other countries, all people (especially considering our economic privilege in this country) should receive a baseline of support in order to live good lives (but I’ll leave that discussion for another post). These are modeled in other countries but we don’t pay attention. There are too many people living in poverty and many other people are making lots of money in the false-marketing of cure and recovery, not assistance, support, rights, social supports, attitudes, and yes, employment – the latter which more often than not is also a means of emotional and social support. Such exclusion in policy and law speaks volumes. Autism Speak’s leader in Toronto states that she “hates autism but not her child.” What message does that send to a public still in need of education about disability, it’s history and human rights? How does that attitude improve the lives and acceptance of her child, and other people who will always be autistic? These are the challenges that are most difficult to face and that ask many families with any child who is different to lock up their doors and stay off the playground. If we don’t talk now, we are risking a horrible reversion to institutionalization.

Instead, let us think about how we can work together to recognize that our country is sick, not autistic children and adults. We some of that change such as the recent settlement of former inmates of Huronia. We need to work with our communities to identify the attitudes and policies that lock us out and keep us in isolation.

When does a hateful letter become a hate crime? An Open Letter-Post to the Begley’s

Filed Under (Activism, Human Rights, Law) by Estee on 21-08-2013

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I returned home from Germany to find this story (the letter above) in my email box. How ironic. I had lived in Germany 26 years ago for school, and spent much of this trip marveling at the new Jewish museums, memorials and many new races living in Germany that did not do so to this extent when I lived there. Still, I didn’t get the sense that in cities such as Berlin, for instance, that these museums of hopefully-never-forgetting insures the security and citizenship rights for Jewish citizens or citizens of other races or disabilities. Work goes into protecting rights; they are not, sadly, given, and often impermanent. Therefore, there is work to be done.

During my trip, I brought my portable Hanna Arendt. I am thinking specifically of her essay, The Perplexities on the Rights of Man where she discusses inalienable rights and The Rights of Man which proved to be unenforcable: “The calamity of the rightless is not that the are deprived of life, liberty and the pursuit of happiness, or of equality before the law, but that no law exists for them…” She goes on to say how having a country was important for the Jewish people because without one, they were not considered people at all. Of course, we can’t produce a country for disabled people in order to obtain citizenship – it’s a silly thought if not a dangerous one; Arendt protests the classless citizen – one without rights – by arguing that the prisoner, at least, has a citizenship status; the Jews on the other hand, much like disabled people, have been targets for complete erasure from society. Similarly today, my concern is that autistic people continue to be status-less.

“The fundamental deprivation of human rights is manifested first and above all in the deprivation of a place in the world which makes opinions significant and actions effective. Something much more fundamental than freedom and justice, which are rights of citizens, is at stake when belonging to the community into which one is born is no longer a matter of course and not belonging no longer matter of choice, or when one is place in a situation where, unless he commits a crime, his treatment by others does not depend on what he does or does not do. This extremity, and nothing else, is the situation of people deprived of human rights” (Arendt, 2000, 37).

I conflate these situations – the disabled and citizenship status – with the recent story of this hate letter sent to the Begley family regarding their son Max playing in their yard. Waking at 4 a.m. this morning from Europe, I turned on CBC news to hear that this letter is not considered a hate crime (the other report suggests it is still under investigation at the time of this writing), and I thought that we must, as a community, ask just when, then, does a hate crime occur? Does it take more than one letter? Hundreds? Physical violence? Institutionalization? Calls for euthanization? Would this be in question if this letter was written about other “acceptable” diversities such as race, gender or sexuality? Why might we even have to accept this letter, regarding an autistic child, as escaping the category of harmful crime when it threatens, if not illustrates, many ignorances about autism? Why must we live – as autistic people and the families who love them – as second class citizens, or, as Arendt would probably argue, non-citizens? Are we not allowed, as this letter suggests, to go out and play, go shopping, be with others?

In Ontario, the disabled have the mechanisms under The Ontario Human Rights Commission and the Canadian Charter’s Section 15 for the rights of people with disabilities (although another discussion, I posit these Canadian instruments for reference purposes, not for the issues inherent in enforcing these codes or issues I have with the OHRC process). In 1976, the Union of Physically Impaired Against Segregation released the landmark statement that provided the beginnings of the social model of disability; “disability is a situation caused by social conditions…[d]isability is something imposed on top of our impairments by the way we are unnecessarily isolated and excluded from full participation in society (UPIAS, 14). While we have these new mechanisms that can be enforced, we know that until autism is understood in social terms, as a human rights issue, and not only governed by etiological interests that often occlude autistic personhood, enforcing autistic rights and cultivating understanding will encounter further discussions of citizenship, that merge with notions of capacity, various models of disability, and more.

For the purposes of this post, it is important, I think, to stick with a fundamental concern I have which is the right for autistic people and their families to live and thrive in their communities, to go to school, to have support, and be accepted as they are and to live a life without arbitrary labeling, diagnosis, testing buttressed by ignorance and the ignoring of a person’s right to live in society with their disability – to live free from harmful words and threat. As for the Begley’s and our families, we must not cave in to the violent words produced by their neighbour, but to protest against them in order that we too may partake in the fruits of life, to contribute to them, to be allowed to roam free with our whoops and flaps and delight in the lives of our children, and them in ours. For when these fundamental human necessities for life and well-being are threatened, particularly considering the tenuous status of the autistic human subject, we might consider this letter in and of itself the words of a hate crime – for words are the foundations upon which further human atrocities are built.

To add, CBC also posted an essay, What is a Hate Crime? which highlights section 319 of the Criminal Code: “The Criminal Code of Canada says a hate crime is committed to intimidate, harm or terrify not only a person, but an entire group of people to which the victim belongs. The victims are targeted for who they are, not because of anything they have done…It is illegal to communicate hatred in a public place by telephone, broadcast or through other audio or visual means. The same section protects people from being charged with a hate crime if their statements are truthful or the expression of a religious opinion.” I would think that we should all take up this as a threat to the entire autism community.

So let’s ask the key question again and I challenge our autism societies to take this up – when does a letter become a hate crime? Or, why is considered not to be a hate crime – perhaps this question is more revealing in how we regard autism and autistic people, and that society-at-large considers autistics, non-persons. Therefore, how can we protect the future of our children and autistic adults living in society? As for me, I write this open letter/post in support of any legal action they pursue against the author of this letter.

Reference:

Arendt, Hanna. (2000). The Portable Hanna Arendt. Peter Baehr (Ed.) Penguin Books.

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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.