Independence Before the Right to Inclusion is Not Equality

Filed Under (Accessibility, Activism, Aides and Assistants, Discrimination, Diversity, Inclusion, Law) by Estee on 11-11-2014

We at The Autism Acceptance Project will be addressing the following:

We need to discuss problems with autism programs, our communities (including schools) and inclusion. There is continued segregation and fissure within the autism community over the notion of recovery and independence. Our Canadian Charter of Rights and Freedoms, Section 15, states:

Equality Rights

Marginal note:Equality before and under law and equal protection and benefit of law

15. (1) Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.
Marginal note:Affirmative action programs

(2) Subsection (1) does not preclude any law, program or activity that has as its object the amelioration of conditions of disadvantaged individuals or groups including those that are disadvantaged because of race, national or ethnic origin, colour, religion, sex, age or mental or physical disability. (84)

It is, therefore, everyone’s duty to accommodate – equal rights means the right to be included. While Section 15 and other instruments exist and rights are stated, they are still not enacted. There are a lot of conditions for the participation in many programs, many of them made for the autistic population, and of course in our community-at-large. A recent court case cited this issue (Moore vs. British Columbia) whereby it was noted that remediation before the right to inclusion is not inclusion; this is in effect, discrimination. In fact, the term is adverse effect discrimination whereby the concept of remediation is a barrier to participation and inclusion. We can point to many autism services that segregate, punish, or attempt to normalize the autistic citizen as such. In Moore, this statement was made although not highlighted enough. The disability community must be involved in shaping the meaning of accommodation, and they are missing from the discourse in cases like Moore v. British Columbia, 2012. In short, remediation is not accommodation; the former can be viewed as a disciplinary term and the latter must be created in accompaniment with disabled people to enable disabled people. The case of Moore can be scrutinized in more depth regarding the ontological constructions in policy and law that continue to exclude people with disabilities in the school system and in other programs.

Problematic is our notion of independence as a criteria for participation and enabled (or supported) participation in the community. As a result, many autism programs, and of course universities and schools, maintain this barrier to participation. It happens when human assistants (appointed and/or approved by the autistic person) are not allowed to accompany autistic citizens; when children are segregated into autism classrooms; and when many folks who have significant challenges are not provided access under the assumption that they are not able because they are in need of support. Such assistance is akin to the deaf requiring an interpreter, however, our notions and associations around independence remain the foundation under which exclusion still occurs; such notions require our demolition. These conditions to participation are neither accommodation nor equality. This is also supported by Rioux and Frazee:

“Equality under s. 15 entails much more than simply ‘accommodating’ persons with disabilities into existing societal norms and structures leaving unscrutinized those norms and structures themselves. Substantive equality challenges the very existence of mainstream structural and institutional barriers, including the socially constructed notions of disability which inform them. For persons with disabilities, equality means the right to participate in an inclusive society. It does not mean the right to participate in mainstream society through the adoption of non-disabled norms.” (Rioux and Frazee, 1999).

If you attended the talks and film screenings in Toronto with the film’s subjects Larry and Tracy (Wretches & Jabberers) – autistic people who type to communicate and require assistance – it becomes clear(er) that most autistic individuals who are given access to assistance and communication devices with support can participate. It also becomes clear the levels of injustice that take place everyday for citizens who struggle with speech and physical differences. However, most of our therapies are built to make the individual as independent or non-autistic as possible. We require a standard (and law) by which service and assistance supports the rights of the autistic agent to be included. We know that many people will never “measure up” (as we like to think that they can be normalized through isolating intensive interventions) to become fully independent, but can enjoy life and participate given opportunity and access. By segregating autistic people and putting these conditions on their participation, we as a Canadian society are devaluing the autistic citizen.

We will be discussing ways and means to address this barrier, and call into question organizations (many of them autism organizations themselves who claim to provide services that are funded by the public purse) who provide a qualified inclusion – to those people whose bodies appear and behave as “normal” as possible. There will be thousands of autistic Canadians who will, as such, never achieve the quality of life that the Charter states, is their entitlement.

For further consideration and discussion, please view this video with Yvonne Peters, Gwen Brodsky, Ravi Malhotra who Discuss Inclusion After the Moore Case. This video provides some legal context for this discussion:

Reference:

Rioux, Marcia H. and Frazee, Catherine. (1999). The Canadian Framework for Disability Equality Rights in Melinda Jones & Lee Ann Basser Marks, et al., eds. Disability, Divers-Ability and Legal Change, Kluwer Law International. p. 89.

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.

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?

Upcoming Events and News:

Filed Under (Disability Finances/Benefits, Inclusion, Law) by Estee on 10-05-2013

TORONTO, May 7, 2013 – The Law Commission of Ontario (LCO) is beginning a new project at the request of the Ontario government to address how adults with developmental or mental disabilities might be better enabled to participate in the federal Registered Disability Savings Plan (RSDP) created by the federal government without an expensive competency assessment.

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

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

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

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Aussi disponible en français

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

Other News:


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

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:

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!

The Different and Equal Premise and the Law

Filed Under (autism, Law) by Estee on 09-01-2013

I’ve started my next semester of my Master’s studies, now taking law and cultural studies at the same time, hoping to engage the law through an arts-based approach. Sitting in class yesterday discussing various issues around pain and physiotherapy, the issue of Occupational Therapy also entered the discussion. It started as a discussion regarding a study conducted by a person with CP about a person with CP who took a superior position over her subject and seemed to take a neo-liberal stance – the subject was not doing their exercises to mitigate/manage their pain and the implication of blame took the perspective of an obligation to become a citizen by managing oneself (arguably to become more normalized). The hidden bias was that we must look after our health for the purposes of becoming productive citizens of the state, and we are less valuable if we do not do so. There are elegant counter-arguments, namely Sunny Taylor’s The Right Not to Work, which I would encourage you to read if you have the time.

I will continue to write on something I picked up from Carol Tavris and included in my essay The Mismeasure of Autism – that autistic citizens are different and equal. Marcia Rioux also utilizes this notion in speaking of the law for people with disabilities:

“If equality depends on sameness or on being similarly situated, then the fact of difference warrants unequal treatment. A concept of equality that requires that likes be treated alike and unlikes be treated differently presumes the impartial enforcement of legal and social rights. It makes no difference to attempt to clarify what makes people equal in particular circumstances or for particular purposes. There is no prescriptive element to the principle on which governments might base their decisions about which people are to be accorded unequal treatment. The principle simply establishes the generally accepted rule of law that procedural fairness must be applied for law to be legitimate. Neutrality in the application of the law and the absence of different treatment are presumed to result in equality. For example, people who cannot fill out forms are deined the right to vote, while others, who can read and write, are afforded that right. The law is equally applied to all those who cannot provide the information; therefore the fact that it has a differential impact on those with intellectual disabilities is insignificant. So are extraneous causes for such lack of ability; neither the systemic, legal exclusion of those with intellectual disabilties from the regular education system nor the means of eliciting the information, which is in a mode of communication less accessible to them than to others, are taken into account in determining justified and unjustified distinctions.” (Rioux, 1994).

Rioux contends that the law assumes here that justice is safeguarded on this premise of sameness as it is appropriated to the notion of equality. We still tend to utilize the arguments that all humans are the “same,” even with their disabilities, despite the complexities and different needs among, for the purposes of this blog, autistic individuals. Which leads me to quickly elaborate on my point made in my previous posts that autism is a social construction. It is if we consider that the diagnositc criteria is created by teams of people and the notions and conceptions evolve with changes in society and over time. Arguments can be made for and against these constructions. Yet, the communities that have been created as a result of the construction have been helpful for many people. It can often help to relate to others. This collectivism, however, does not assume that all autistic people share the exact same experiences or share the same feelings about their lives, or about autism itself. What we can value is the many and varied experiences that people may share with us. This can avoide a possible damaging reification and over-generalization about autism, indviduals, experience and needs. It does not consider the complex cultural, socio-economic, gender-based and other intersections that also effect individual experience.

Let me go back to the beginning of my thoughts about the CP (Cerebral Palsy) article. It was the idea of various therapies that struck me and an autistic person’s right to deny treatment, and to deny being touched. I think back to when Adam was much younger – when some therapists thought to rough and tumble him would normalize him, or that touching him for therapeutic reasons was simply okay. Occupational therapists do this all the time. I never thought twice about it. I always thought that OT was helpful for Adam, and I do think it was helpful for his motor-planning and sensory needs. It was the manner and the respect of therapists towards Adam’s dignity that I continue to seek out for him. Over time, I came to ask these questions: Is he being respected? Do people attempt to teach him on the premise of “being less than competent” than a so-called “normal”population? Do those who engage with him respect him in all ways or feel he must always be taught to be normal? Do we play on his terms as well as asking him to play on ours? Is the relationship reciprocal? Complicating matters regarding the autistic child is the matter of how we treat and regard children in general. Yet we all know that the fully verbal child has the ability to say no (even if not listened to) and the autistic child may say no in their behaviour, or that there may be ways of judging “no” if we are patient and willing to pick up the many subtle communications outside of typical langauge systems.

The focus of my work continues along the different and equal premise in all forms and continues to explore emanciaptory research and participation of non-verbal autistic individuals, often deemed the least valuable and able in our society, therefore leading to continued normalization treatments, exclusion, and sadly, abuse.

“Setting the equality standard as an outcome measure removes the need for each disadvantaged group to demonstrate discrimination. It replaces the capacity to compete as the basis for political obligation. It takes into account the social reality of the disabled and non-disabled as well as their biological differences. And it thus makes the achievement of social justice dependent on a recognition of those differences that must be accommodated to achieve equality of well-being.” (Rioux, 1994).

Now with The Autism Genome Project seeking ways to isolate and identify the autistic person in vitro, and considering the date of Rioux’s article (1994), I wonder how much longer it will take for the different and equal premise to take hold in law so that autistic people can be considered valued Canadian citizens.

References:

Gaskin, C., Anderson, M., Morric, T (2012) Physical Activity in the Life of a Woman with Cerebral Palsy: Physiotherapy, Social Exclusion, Competence and Intimacy. Disability & Society 27:2 (March), 205-218.

Rioux, Marcia H. (1994) Towards a Concept of Equality of Well-Being: Overcoming the Social and Legal Construction of Inequality, 7:1 Canadian J.L. & Jur. 127.

Founder of Judge Rotenberg Centre Charged: Why did it take so long?

Filed Under (Behaviours, Institutions, Law) by Estee on 25-05-2011

Matthew Israel, Founder of the Judge Rotenberg Educational Centre where autistic students were taught to comply with electrical shock “treatment,” has finally been charged. Here from Boston.com:

The founder of the controversial Judge Rotenberg Educational Center is scheduled to face criminal charges in Dedham today arising from a night in 2007 when two special needs teenagers at the center were wrongfully administered dozens of electrical shocks, according to the father of one of the victims and another person with knowledge about the case.

In a deal reached with the state attorney general’s office, Matthew Israel, 77, is expected to be spared prison time in return for stepping down from the Canton-based center that he founded 40 years ago and accepting a five-year probationary term, said Charles Dumas, the father of one of the two victims in the 2007 case who said he spoke yesterday with prosecutors. As part of the agreement, the school’s day-to-day activities will also be overseen by a court-approved monitor.

As a mother of an autistic son, I am sick that it has taken this long after many of us signed petitions to stop him. I read through reams of his statements suggesting why this form of Behavioural Conditioning was an “effective treatment” for autism.

The Judge Rotenberg Center treatment goals include a near-zero rejection/expulsion policy, active treatment with a behavioral approach directed exclusively towards normalization, frequent use of behavioral rewards and punishment, video monitoring of staff and the option to use aversives, the most controversial of which is the use of electric shocks. The final item has provoked considerable controversy and has led to calls from several disability rights groups to call for human protection from behavior modification, behavior therapy, and applied behavior analysis approaches.(From Wikipedia)

“Its most effective backers have been the parents of some of these troubled students who say Israel’s center accepted their child when no other school would. Israel has said his methods work and have virtually eliminated the use of psychotropic drugs at his center,” says the Boston Globe.

Is this the type of quality education we receive for autistic students when “no other school” will provide it? And don’t kid yourself that similar aversive tactics are not used here in Ontario. You will hear of the autistic person being “ignored” by therapists as a behavioural tactic in order to stop the person from crying. Instead of attempting to figure out what might be the root and cause of upset, a child or person will receive this cruel form of “teaching.” It is my experience that this makes a person either more aggressive or shuts them down completely.

[Israel’s] tactics have been condemned as barbaric and savage by many top medical and mental health professionals. But despite some injuries and even deaths at the facility, the center has continued to get state approval to operate as a special-needs school serving some 200 students with serious emotional and behavioral problems, including autism and intellectual disabilities.

It has taken years for Israel to be charged and such tactics to be viewed as criminal. There have been many parents who have believed that this shock treatment has been helpful and have stuck up for the Centre, typically arguing that their children are aggressive or self-injure, and the arguments can sound compelling. This is one of the reasons why it took so long to charge Israel. This is the side of parent advocacy that is risky to autistic folk. There is a side to people we don’t want to see. There are difficult sides and as our history has shown, we’d rather lock it away in institutions, and treat it harshly and ignore it all together. I was never convinced that treating human beings with shock treatment against their will was ever a viable option. I don’t imagine I ever will be.

What is Justice and the Democratic Debate?

Filed Under (Activism, Advocacy, autism, Law, Politics) by Estee on 08-06-2010

This lecture on TED.com by Michael Sandel (Harvard) constructs an argument using this case of Casey Martin and his need for accommodation on the golf course. He suggests that without engaging our moral convictions in a constructive argument, we are doing ourselves a disservice. In the autism sphere, it is very much time for these discussions where “engagement” has become very much like that “ideological food fight.” Some voices are stronger, indeed and others are downright nasty and others still use false facts to present a case. Yet, this is no time to back away. It’s time to think about how to engage ethically in the autism debate.

What is justice, Sandel asks his audience? Like Aristotle, Sandel agrees that justice cannot be determined without an understanding of the following:

1) What abilities we recognize as worthy of honour and recognition and,
2) the purpose of our social institutions.

It seems to me that these are, in fact, the essential questions that we can ask ourselves as we discuss and debate the bigger questions like “what is autism?” and “what kinds of help do autistics need to contribute to society?” The question pertinent here, of course, is how and if we regard autistic individuals as worthy and how we prove that we believe it.

Why Is Autism A “Crime?”

Filed Under (Activism, Law) by Estee on 13-05-2010

What do Michel Foucault, who taught at the Collège de France and Edward Scissorhands have in common? What do they both teach us in relation to how people with cognitive differences are treated by the legal system?

Foucault’s lectures from 1974-1975, compiled in the book Abnormal (Edited by Valerio Marchetti and Antonella Salomoni), suggest that our legal system is a mechanism of exclusion. Foucault argues that the emergence of abnormal in the nineteenth century constitutes the basis of human as: “the monster, the individual to be corrected, and the onanist.” It was the nineteenth century that saw the system of “normal” birth in the way we understand it today. Adolphe Quetelet established a measure of the stars that was also used as a model to create a “statistical norm” of humans for political purposes during this period. It should not be surprising then, that this system of “regularities” was used in medico-legal practice, and “produced a psychologico-moral double of the legal offense [thus] creating [a model] of the ‘dangerous individual.'”

Just how do we determine who is dangerous? The question is important since people with cognitive differences have been marginalized, feared and unjustly incarcerated. I do not think it needs rementioning that this fear underlies, even, the many media reports about autism and the fierce quest for a cure. Foucault, further, cites legal examples of how we exclude, judge, fear and incarcerate individuals who MAY BE a danger to society.

“The examination is that form of knowledge and power that gives rise to the ‘human sciences,’ and thus that contributes to the constitution of the domain of the abnormal. The examination of the ‘dangerous individual,’ for example, implied a control not primarily of what individuals did, but of what they might do. [italics mine], what they are capable of doing. ‘Dangerousness’ meant that the individual ‘must be considered by society at the level of his potentialities and not at the level of his acts,’ not as someone who had actually violated a law, but as someone whose potential behavior had to be subject to control and correction.”

Foucault has also said, “Expert opinion shows how the individual already resembles his crime before he has committed it.”

He also said in his lectures, “The first property is the power to determine, directly or indirectly, a decision of justice that ultimately concerns a person’s freedom or detention, or, if it comes to it, life and death. So, these are the discourses that ultimately have the power of life and death. Second property: From what does this power of life and death derive? From the judicial system, perhaps, but these discourses also have this power by virtue of the fact that they function as discourses of truth within the judicial system. They function as discourses of truth because they are discourses within a scientific status or discourses expressed exclusively by qualified people within a scientific institution. Discourses that can kill, discourses of truth, and, the third property, discourses — you yourselves are the proof and witnesses of this — that make you laugh. And discourses of truth that provoke laughter and have the institutional power to kill, are, after all, in a society like ours, discourses that deserve some attention…These everyday discourses of truth that kill and provoke laughter are at the very heart of our judicial system.”

As Foucault cites specific legal cases, it becomes clear that the least element of proof has been enough to entail a certain element of penalty.  I do not think I need to cite specific cases in autism where autistic people are marginalized, assumed to be dangerous, and who often are mistreated by those in law enforcement. These stories are in the news every month. Stories of how autistic people are feared manifest in our treatment of them and the burden of proof lies heavy upon the autistic person.

As I watched Edward Scissorhands again last night, which should be a cult film of the disability genre, I want you to pay specific attention to the court scene and the “expert” opinion and then the group of women perpetuating fear. As autism is diagnosed by observation only, I hope to illustrate the bias that underlies our thinking and permeates our society and how it effects the treatment of autistic individuals not only by our formal institutions, but as Foucault takes further, in the law:

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References:

Michel Foucault, Abnormal: Lectures At The Collège De France, 1974-1975, New York: Picador, 1999.

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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.