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.

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.

Grace and Disgrace on the Subway

Filed Under (Activism) by Estee on 07-11-2014

I’ve been thinking of writing about the faith I often have in daily encounters with people on our subway also known as the Toronto Transit Commission (TTC). In addition to the autism label, Adam also has tics known as Tourettes Syndrome. His manifest in a loud “ow.” This will turn many heads, mostly to see if everything is okay. Sometimes Adam can get stuck in his ow. It will attract attention and I have tried to help him cultivate a tool box of things where he can help himself get unstuck, but he still requires support in this.

I know so well about the feeling of being stared at, and I know that Adam feels it more. The more people raise the tension in the room, the more Adam will tic. It is stress-based or triggered by various thoughts and emotions, largely negative ones. I think that most people are very forgiving which makes me (mostly) proud to live here in Toronto. Sometimes people will give us more room and smile at us. I like to believe that others see how I positively interact with Adam and witness our loving relationship, and this also eases the situation.

Rarely do we get an irritated stare, but it does happen once in a while. Sometimes I will find myself just wrapping my arm around Adam, or just going on with our activity and ignoring it. I like to lead by example, and I do think this is what we parents have to do in these situations. As my father continues to tell me, don’t give a shit about what anyone else thinks. Yes, sometimes easier said than done, but considering the circumstances, it really helps.

Although a lot of my writing is fed up with disgraceful behaviour and assumptions from a society that seems so restrictive in terms of where Adam can be and how he is allowed to participate in his community, I spend an inordinate amount of time trying to find the good in everyone. I suppose it’s the counterbalance to an often tough situation.

I’m doing it now. I want to thank all those people (who will never read this) for their acceptance on the subway – or maybe it’s just not wanting to bother. At any rate, non-interference really helps.

At the same time, I want to also mention the two young men who walked in front of me the other day talking “about this guy with Tourettes who dropped a tray and said fuck fuck fuck fuck…” Of course the guys were laughing out loud and I so wanted to say “Excuse me guys, but my son has Tourettes and he can’t help it. It would be great if you could be more gracious about it – yada yada.” The same thing happened today when an autistic man was on the subway and wanted to talk to people. He approached two young black men – and I will describe them because it is an example of how an acceptance of racial diversity doesn’t automatically relate to an acceptance of ability diversity (or disability). The autistic man approached them and was talking to them – it surprised the two young men. They looked at the autistic man oddly and began to laugh at him. I realize that they were surprised and didn’t know what to do, and oftentimes nervousness manifests in a cruel laughter. Then, I thought that the right thing to do would have been just to say hello to him – that he was just trying to be friendly even if his way wasn’t typical. This too caught me by surprise today – I was reading a book and thought, if my timing was right, I would have walked down and just said, “hey guys, maybe you could have just said hello. He looked like he was trying to be friendly. There are a lot of autistic people…yada yada.”

If we could stand up for others in history, isn’t it also time we stand up for disabled people when the situation warrants? I admit I was too late and I’m kicking myself for it – am I too a product of our modern malaise and social detatchment? I like to think we can nurture grace by being gracefully forthright.

A Rights-Base Approach for Autism

Filed Under (Activism, Autism and Intelligence, Communication, Discrimination, Inclusion, Politics, What is Disability?) by Estee on 05-11-2014

Adam is typing a deluge of sentences, feelings, anger at being ignored by certain people; upset by some people in his life that still do not “see his mind,” as he puts it. As Adam’s parent and protector, I know there is good reason to share our journey and good reason to protect Adam’s growth by not sharing too much. I am cognizant of his consent so I will make hints and speak generally.

We all know that there are people who like to doubt and target the autistic child or adult. Adam has a cadre of supporters around him as he is learning to assert his rights and self-advocate now as a more fluent typist. The flood gates are opening and hopefully the people in his life will pay attention. Despite his prolific writing, there are many who don’t.

I was disappointed to read that an autism school, after having seen the movie Wretches & Jabberers, ream off reasons why it is so necessary for autistic people to become independent. We have a huge problem as we still cite autism as a problem in our society (mostly because of a lack of independence) and this makes it hard for many to live good lives. A blog post is not enough space to qualify what makes a good life, or how the notion of freedom and individualism is also a part of the disability rights movement itself. I will just go on briefly about the state we are in without those qualifications.

Instead of talking about rights to access, inclusion and support, our communities continue to discuss ways to make people independent before the right to inclusion and participation in society. There is a major flaw with this premise in that for most, this will result in permanent exclusion and segregation into special schools and disability centres. One method to reverse this may be to make it mandatory for acceptance and support to enable the right to be included, but of course we need a value system to buttress this. Until we understand how autistic people can be enabled, and how they wish to be supported, we usually set the stage for an inequitable and unjust relationships whereby the people who “teach” autistic people put themselves in a superior role of remediator (therapist, teacher, etc). This means that we believe that the normal body and behaviour is considered the “right” way to be in society.

We have to understand the necessity of support before we go further, and seek counsel from autistic people in how they wish to be supported.This happens in our everyday interactions, as every behaviour is a mode of communication. Good support that is grounded in understanding rights, the theory behind that, and more pointedly, the movement differences of many folks with disabilities helps us to understand the need for support (there are more points to be made but I just wrote these to be a starting point for discussion). However, we also have to remember that the supports are not universal because there is no monolithic autism. It is this tension about competing needs in the service industry that makes this complicated. Not every autistic person requires the same support, but everyone does require the same access and rights. Rights requires a more detailed discussion too, but again, I am writing from a basic premise that our rights in society are established even though they not always acknowledged or enacted.

Sometimes support can enable people to become independent. Other times, it can enable that much more independence than before, but not absolute independence. Of course, this is a fractured notion since none of us are independent. We can think of a myriad of examples of how we are all connected despite our heralded idea of individualism and the notion of freedom associated with this. By way of philosopher Charles Taylor, I quite agree that our modern notions individualism and freedom are tied in with instrumental reason, that is, a means to an end. In ordinary terms that relate to autism and independence, this means that the heralded modern ideal makes it incumbent to be independent to be included and to work (the means, to be independent, becomes the end, a person who costs less and is efficient to producing goods in a market economy as it is today). As such, the ideal is exclusive and does not work for the majority of autistic people. What we will have left after the misguided premise will be more need for adult services which continue to segregate and have done nothing to enable communication, choice, and participation.

The film Wretches & Jabberers certainly promotes the idea of the independent mind – but that mind is enabled by support. It refutes the assumption that a cogent mind and a fluent body must co-exist. We learn that the body will often not do what the mind is thinking, and that the body also has its own unique ways of knowing through movements we call “inappropriate” (the term “inappropriate behaviour” should be reserved for people who inflict ill will to another). Without support, many autistic people who have movement difficulties, inability to speak, and other difficulties, would never gain access to any communication whatsoever. In turn, it is equally unjust to take an autistic person’s voice away when a therapist or a support worker wishes to be successful in helping the autistic person to the point that it enables the therapist’s own career. For example, in many therapeutic settings, a therapist will do certain things to over prompt the autistic person to gain a positive outcome or may falsify data results. This happens with supported communication just has much as it happens in ABA and with other methods. A “best practice” seems to me to take all of the above into account to ensure that the checks and balances are there to test the support worker more than the autistic person – which requires a rights-based approach.

Supported communication’s time has come as more and more autistic children gain access with support and later do become independent. Maybe this is more so than in the 1990’s because many have matured from childhood to become regular and mostly independent (through typing) communicators.(For the time being I am not going into the problems of a positivist to this). It is this burden of proof, incumbent on the autistic body, that has sadly been necessary as a result of a doubting public on the intelligence of individuals who cannot speak, or who make “inarticulate” sounds and effusive bodily movements. However, let us not withdraw support for those who require the assistant or aide worker to contribute, work and communicate. For many, this interdependency will be vital to life. In this sense, plenty of proofs (as quoted from the film) are not enough. We need a proof of commitment from every person in society; we need the proof that autistic rights/disability rights mean something in Canada. We need to be able to enforce those rights.

So this obviously, I hope, points to something I think we all need to discuss: ourselves. What is it about society that keeps autistic people from participating as autistic people? What assumptions do we make about disability and belonging and why is most of it lip service and not action? What is a rights based approach to helping autistic people? Why are we avoiding helping people to use devices?

One thing I have learned is that we learn to include by including. Adam is severely autistic and intelligent and has so much he wants to offer. He has friends. He complains about being ignored by some people who likely assume that he doesn’t understand. These complaints suggest something very wrong with our assumptions that despite the work of autistic people for us to hear and see them, continue to be ignored. Why? What more proof do we need?

Now I come to the who benefits question. I’ve written about this before, as have many writers and theorists. Perhaps we have to take a look at the industry we have created from the vulnerabilities of others. Who is getting paid? Who is getting attention or even celebrity in the autism world and why? I’m fed up with an expert culture feeding upon parent’s imaginations and pocket books. As I see and do in our own autism lives here in Toronto, education and access can work. We are living and breathing examples of it. But ours is a hard-work story. It’s not a cure story, and not one that feeds into celebrity culture.

Every day I work to figure out why and who this can be made accessible to the many families who are in need of support, but either are drained financially or must be subservient to a program that they must take or get nothing else. You may think at this point that it costs too much. Indeed, that’s the economic cost to society argument that comes at a great cost to many. It is inhumane. The great cost is continue to promote a method of therapy fueled by an attitude that continues to segregate. We tend to concur with an argument that abuse perpetrated by aide workers happens because of economic reasons – that the worker is being paid too little. I realize this could be a topic of its own, but I can’t resist inserting it here. How can we accept this low standard for disabled people? We would not accept this for children, but over and over again we hear it happens to disabled people and write off the story instead of talking about our collective ethical responsibility to improve our attitudes and values towards the disabled in our society. And this needs to happen among people who are not touched by disability as much as within disabled families. The only way we can make it happen is together. The only way we can improve our lives is to change the way we discuss autism and society.

I would love to have a voice loud enough to make a call to all schools and autism organizations, parents and autistic people, to include these discussions in the autism agenda; perhaps I can only hope some people will take what they need from this and many other posts written by autistic people. We need to come together to create this collective voice! Very often these policy documents are centred around therapy and services. Ethics, value, inclusion are sidelined by discussions about how to make the autistic person independent through therapy. I believe that a person-centred approach could be focussed more on these autistic rights and ethics discussions. The question is, why hasn’t it?

Rights is not necessarily (and most definitely not exclusively) about the right to therapy but the right to be autistic and included. In the meantime, since these rights are established (although not acknowledged for autistic people in Canada as we can see by our public institutions) we must do everything to provide access to communication tools beyond a PECS system. Autistic people are intelligent and the spectrum notion is highly misguided in terms of our understanding of people, yet it satisfies the need for a quick summary of autistic people for non-autistic people. We must also urge people to rid the notion that the autistic person will miraculously one day type clear thoughts or speak – it is unfair for the autistic people and supporters who toil to communicate. This is not to say that an autistic person will not come to speech later in life. Indeed Adam can talk the more he types but talking is different than typing. You can read up on that yourself. Not all autistic people will ever be able to talk even though they will be able to type (notice my assertion).

As many will attest who have learned to type, it’s a long and arduous process for both the typist and the supporter. Adam is now 12 and is just beginning to really express complicated things. We’ve been at it since he was 4, and we still have a ways to go. This is the kind of patience, perseverance and belief that all of us require to support the autistic person into adulthood. I know that Adam will go on in his education, so long as we can fight for the right for him to be classroom at either college or university. As Adam grows and learns now that he is out of autism classrooms, I can say safely that it’s not a matter of if, it’s a matter of when. This is also the case for his speaking up to the people in his life and about his own experiences as a person who has had to live with this autism label and all that it comes with. I am not underestimating the ongoing challenges that he will have to contend with, and how I will have to support him in this. I am often enraged by our culture that perpetuates despair for families instead of supporting them in making all of our “autistic lives” good and contented ones.

It takes a fight to avoid the pull of “experts” who will insist that your child has the “intelligence of a 5 year old,” or from the doctor who, after an 18 second observation will tell you that your child’s tics require psychotropic medication (the list goes on). For certain, every person’s situation is different and will require different supports, but the point is that too often we let the medical profession and the medicalized therapeutic professions do this to us and we all need more empowerment and support to critically think about what it is that prevents our children from being in a classroom to being out in the community with all kinds of people – not just fellow autistic ones. It is better to find someone who will spend time and listen with us, start with conservative approaches, and of course, put the rights of the child first. We must find each other for support along the way.

While I get fed up with the barrage of public opinion (indeed another flaw of modern culture that insists that individualism is associated with this free opinion) that suggest that independence is of utmost importance and the underlying prejudice (and thus barrier) that exists within that statement, I think that we have a lot more work to do. Sometimes we have to be brave in this and say it like it is.

Humber College Cancels Tunnel Tours For Tomorrow ONLY (re: The former Lakeshore Asylum)

Filed Under (Activism, Institutionalization) by Estee on 30-10-2014

I am writing to let everyone know that Humber College, thanks also to the work of Tracy Mack and Geoffrey Reaume, have canceled their tours for tomorrow ONLY of the former Lakeshore Asylum for Halloween tomorrow. I hope we can look forward to tours that educate the public with the input of the disability community and psychiatric survivor community. We will be watching.

ASAN’s letter regarding under-representation of autistic people on IACC:

Filed Under (Activism, Autistic Self Advocacy, Organizations/Events, Politics, The Autism Acceptance Project) by Estee on 29-10-2014

I am adding this press release as the founder and director of The Autism Acceptance Project and critical disability scholar who supports autistic-driven agency and political mandates for autism. I would like our Canadian agencies to consider the same and question how we might also urge our politicians to mandate autism agencies to do the same. Please share:

FOR IMMEDIATE RELEASE

October 29, 2014

Autistic Self Advocacy Network applauds letter from Congressional champions urging increased representation of autistic adults in Autism CARES Act funded programs.

WASHINGTON, D.C.—The Autistic Self Advocacy Network applauded five leading congressional champions for autism services this morning for authoring a letter sent yesterday to the Department of Health and Human Services (HHS) and the National Institutes of Health (NIH). The letter, signed by Rep. Jan Schakowsky (IL-9), Rep. Tammy Duckworth (IL-8), Rep. Kathy Castor (FL-14), Rep. Jackie Speier (CA-14) and Rep. Paul Tonko (NY-20), expressed concern with lack of representation of autistic people in programs funded by the Autism CARES Act, recently passed legislation governing federal autism programs.

The letter notes the severe underrepresentation of autistic people on the Inter-Agency Autism Coordinating Committee (IACC), which is responsible for overseeing all federal funds used on autism research, and in federally-funded programs on autism and other intellectual and developmental disabilities. The letter also expresses concern over the disproportionately small percentage of research funding that focuses on quality of services (2.4%) and adults on the autism spectrum (1.5%).

“HHS should take the opportunity posed by the Autism CARES legislation to address long-standing inequities in federal autism policy,” said Ari Ne’eman, President of the Autistic Self Advocacy Network. “We applaud Rep. Schakowsky and the other signatories to this letter for their leadership in urging real inclusion of autistic people in federal autism policymaking.”

The signatories to the letter recommended increasing representation of autistic people and organizations run by them on the IACC, ensuring that autistic people participate in training programs funded through the law and other measures designed to enhance participation of autistic people in programs designed to serve them.

The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for Autistic people. ASAN’s supporters include Autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators and friends. Its activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, leadership trainings, cross-disability advocacy, and the development of Autistic cultural activities.

Please help to stop the ghost and “tunnel tours” at the Mimico Lunatic Asylum/Lakeshore psychiatric

Filed Under (Activism, Institutions) by Estee on 27-10-2014

Please help to stop these tours. I have offered to post the letter created by my colleauge, Tracy Mack:

September 1st, 2014 marked the 35th year of the Mimico Lunatic Asylum/Lakeshore psychiatric hospital, now Humber College, closing their doors. In 2008 or 2009, Toronto psychiatric survivors were outraged that Humber was leading ghost tours on Halloween through the tunnels of the historic asylum for a fundraiser for Sick Kids…they were able to stop this event from occurring. Last year, on Halloween they had ghost and tunnel tours. This year they have renamed the tour to the Lakeshore Campus Tunnel Tour. This has to stop. And the connection between Halloween and Lakeshore must be severed.

The tour was done at the end of September this year as well , and it was rife with ghost stories. Whether the campus is Haunted or not is another matter, but the facts presented in this article are skewed and at times even totally inaccurate.

I’d like to share with you a few quotes from an article online, it is written by someone who took the tour this past September:
“Before the tour began, Bang told the group to look out for an orb. Apparently, the orb people see in the tunnels is actually the nurse who hung herself after being caught for having an affair with a patient.”

This is made up folklore, made up stories. Absolutely.

“About halfway down the hallway, we stopped to look at the foundation of the walls. Built with different materials, Bang told the group that management at the psychiatric hospital had the patients build the tunnels themselves in order to keep them occupied and to keep their minds off being institutionalized.”

Right…TO KEEP THEIR MINDS OFF BEING INSTITUTIONALIZED!…this was unpaid patient labour and a form of ‘therapy’. It took patients 8 years of hard manual labour to build the buildings and the tunnels. After inmates built the buildings and tunnels, they also repaired the buildings, transported coal into the asylum, washed and mended their own clothing, worked on the farms, and gardened all in the name of work therapy, if it can seriously be so named, goes beyond the limits of justice and is instead an outright exploitation of patients’ labor. There are, less than a mile away, 1511 mostly unmarked graves, all inmates who died while institutionalized. Yet, this is not ghostly enough to speak about

“Upon seeing a series of indents above the walls, someone asked what they were. Bang explained that the indents were once windows. The hallways were only lit by candle at night and natural sunlight by day. In fact, the working patients often sat and ate their lunch while basking in the sunlight from above.”

I’m sorry, but I doubt there was much “basking in the sunlight”.

“Further down the hallway, we came across many rusted bolts in the wall. “Those bolts used to be for shackles,” said Bang. Patients were shackled to the wall when they were having an “episode” – as Bang put it. Basically, men and women sat with their hands banded together by shackles while they screamed in the glow of the candle-lit hallways.”

What is an “episode” ? And the institution was separated by gender: men and women would not have been “banded together by shackles while they screamed in the glow of the candle-lit hallways”. Conjecture and folklore, combined with bullshit.

“Next we saw a couple of caged cells in the walls. Bang said the rumour is that the jail cells were for naughty patients. Secured with thick beams from ceiling to floor, the jail cell is said to have held patrons that got into many physical fights.”

What is a ‘naughty’ patient? And this is rumour and conjecture.

” Despite not seeing any dead nurse orbs, I was intrigued by the stories of the people who lived and worked here. Imagining how they suffered, abandoned from society, most of them dying unnamed.”

Well, at least they do get one thing right

“If you are interested in taking the tour, Bang will be guiding groups down into the tunnels on Halloween night. You might be in for a treat! Bang said the tour groups that come at night frequently experience the so-called orbs. In other words, a dead nurse is waiting for you to walk her hallway.”

Folklore, made up ghost stories, and unfounded rumors which are then presented as historical facts.
The outrage that is being felt throughout the psychiatric community, again, is premised on the connection between Halloween and the Lakeshore Psychiatric Hospital. That connection is wrong. It’s wrong on any day to perpetuate these ghost stories but on Halloween, the people who take the tours are looking to be scared and for ghost stories.

This year they have downplayed the theme of the tour… naming it as Lakeshore Campus Tunnel Tour, which is impeding our ability to have it cancelled. However, the name does not make a difference, whether it is framed publicly as a ghost tour (as it was last year) or as a tunnel tour… This Halloween ‘event’ is a sad reminder that, despite changes in public attitudes, stigma and discrimination are still alive and kicking, is based on the myth that people who are diagnosed with a psychiatric diagnosis are ‘scary’. We all enjoy a joke, but when they come at the expense of those within the psychiatric community, who struggle everyday with the sanism/stigma, discrimination, and oppression, it does real harm. Halloween attractions based around ‘mental patients’ or ‘asylums’, fuel the deep rooted misconceptions that still surround psychiatric diagnoses. “Imagine how you’d feel if you, or a member of your family, had just been in a psychiatric hospital and were enjoying a fun day out, only to be faced with this type of ‘entertainment’? ” Hundreds of people died in there, people were tortured with ECT, lobotomies, and shock therapy… 35 years ago… some people who were inmates there could still be alive and for others their children or other family members could be. These events, erase the history of the inmates, the history that fuels how this community still have their rights taken away by being forced to take mind altering drugs and involuntarily commitment. Ghost tours would never ever be done in a residential school, yet in terms of psychiatric patients, our histories of abuse and torture are not valuable or deserving of the respect that other marginalized communities do. The history needs to preserved and the untold stories embedded within those walls need to be respectfully heard, the real stories.

How do we respect and memorialize a past such as this? Algoma University is one example. Algoma University in Sault Ste. Marie Ontario, the main building, was the Shingwauk Residential School that closed in 1970. The university runs an archive on residential schools, they have gathered the records of many people who were incarcerated there and in other residential schools. The university offers not only courses but a degree program in Anishinaabe studies. In every class, in every department, Native Studies are intertwined within the courses… as a former student of Algoma… I left not only with a degree in my respective area.. but a wealth of invaluable knowledge in regards to Aboriginal issues….this is how histories filled with abuse and torture should be memorialized…

What this highlights is that as Humber had to cancel this one year due to the outcry of the community… that the exploitation of that history for publicity and capitalist gains is more important than respecting people deemed as having a psychiatric diagnosis. We would like to encourage you to challenge this event, to challenge how it serves to reinforce negative views of those who experience psychiatric diagnosis while concurrently erasing the history of psychiatric inmates, by complaining directly to the Principal of Humber College, Wanda Buote, through e-mails, through phone calls and lastly, if we cannot have it halted… to join us at Humber College for a protest on Halloween night.

Wanda Buote
wanda.buote@humber.ca

416.675.6622 x 3332

If you would like to be involved Halloween night, if we are unable to have this cancelled, please contact Tracy Mack at mstracymack@gmail.com

Off to the Disability Pride March today…

Filed Under (Acceptance, Activism) by Estee on 04-10-2014

Adam’s family (and Adam) are off the the Disability Pride March today at Queen’s Park at 1 p.m. Look for us there. Our placard will read:

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We’re a PROUD AUTISTIC FAMILY.

WE ACCEPT AUTISM.

SO CAN YOU!

…and here we are an hour later… Adam’s first Disability Pride March!! Adam is pictured here with his Grandma and Marg Spoelstra from Autism Ontario. Adam and I were interviewed by CTV News which should be on later:

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A Better Autism Awareness Month?

Filed Under (Ableism, Acceptance, Accessibility, Activism, Advocacy, Autism and Employment, Autism and Intelligence, Autism and The Media, Behaviours, Contributions to Society, Critical Disability Studies, Diversity, Inclusion, Institutions, Uncategorized) by Estee on 08-04-2014

I’ve been sitting back and watching. While not all things are perfect, I have to recall what it was like in Ontario 12 years ago when I was first introduced to this social phenomenon called autism. CNN had numerous reports on the “epidemic” of autism; the MMR vaccine was blamed; there were numerous reports of questionable remedies that put autistic children in harms way; there were hate blogs written about autistic people and parents who wanted to love and support their children.  The blogesphere was not yet syndicated and contained burgeoning home-made blogs by people labeled with autism and we learned a lot from autistics who wrote them – about activism, identity, the right to be who we are in every neurological way. Indeed, neurology is a term of the times which has redefined difference (neurodiversity). Although this is critiqued by many of those belonging to the disabled community as the new normalizing term (Lennard Davis, The End of Normal: Identity in a Biocultural Era, 2013) thereby losing its utility,  I suppose I belong to a group who believes that we might not have gotten to this place of questioning, and beyond an institutional disabled identity (i.e. segregated and isolated), without this renaming and reconceptualization. To further highlight Davis’ important question:

“If we are now living in an identity-culture eshatron in which people are asking whether we are ‘beyond identity,’ then could this development be related in some significant way to the demise of the concept of ‘normality? Is it possible that normal, in its largest sense, which has done such heavy lifting in the area of eugenics, scientific racism, ableism, gender bias, homophobia, and so on, is playing itself out and losing its utility as a driving force in culture in general and academic culture in particular? And if normal is being decommissioned as a discursive organizer, what replaces it?'” (Davis, 1).

Davis argues that diversity has become the new normal.He also makes an important point that there are some people who do not have a choice of identity, which, in my words, may dampen the concept of diversity for our community. In particular, disabled identities are not chosen. Perhaps we now have to think beyond identity and challenge the concepts of acceptance and community in a world where these lines are always expanding and contracting.

That said, I remember what my introduction was to autism. Mothers and fathers before me remember institutionalization. Parents advocate for a world where autistic children are accepted, even if in a neoliberal paradigm (in other words, while we can see its shortcomings, we still do many unpleasant things to survive). It seems the “strengths” of autism at least are earning a place at the employment line, which then perhaps allows our children to get an education and better services. Perhaps our kids will be understood for their sensory, communication and social issues and not be reprimanded or judged for them. All these seem like good things. I would like to imagine a world where we never forget – where many of the younger generation of ABA therapists and teachers have no recollection of “different” kids in their neighborhood suddenly disappearing. There is work to be done to educate people working in the field on the history of disability and institutionalization and how close we always seem to be to doing that again. Must we continue to ask why this is happening despite the advocacy for autism acceptance?

And finally, in Davis’ words:

“There is a built-in contradiction to the idea of diversity in neoliberal ideology, which holds first and foremost each person to be a unique individual. Individualism does no meld easily into the idea of group identity. And yet for neoliberalism it is a must. In a diverse world, one must be part of a ‘different’ group – ethnic, gendered, raced, sexual. It is considered boring if not limiting, under the diversity aegis, to be part of the nondiverse (usually dominant) group. So diversity demands difference so it can claim sameness. In effect, the paradoxical logic is: we are all different; therefore we are all the same.

The problem with diversity is that it really needs two things in order to survive as a concept. It needs to imagine a utopia in which difference will disappear, while living in a present that is obsessed with difference. And it needs to suppress everything that confounds that vision. What is suppressed from the imaginary of diversity, a suppression that actually puts neoliberal diversity into play, are various forms of inequality, notably economic inequality, as the question of power. The power and wealth difference is nowhere to be found in this neoliberal view of diversity….Ultimately what I am arguing is that disability is an identity that is unlike all the others in that it resists change and cure…disability is the ultimate modifier of identity, holding identity to its original meaning of being one with oneself. Which after all is the foundation of difference.” (Davis, 13-14).

While I acknowledge Davis, I find myself thrust into an acceptance paradigm that allows Adam to be in a classroom and in the community, however imperfect (requiring time, exhaustive and emotional effort, Adam’s emotional effort and his ‘trooper’ ability among it all) – and all of this based on proof of competence and ability as he counts money so fast that the adults in the room have to check to see if he’s right (he is). I think it is great if we can enable others to see autism as a way of being in the world – sensory difference as not behavioral belligerence; non-verbal disability as not an unwillingness to speak or non-intelligence. To go on: not looking at someone when they are speaking doesn’t mean that the autistic person doesn’t understand what is being said; not wanting or able to be social should not be isolating or a reason to segregate nor a reason to push one to be social just like everyone else. (So what I’m saying is that as activists and/or advocates, we are still at this place). There are still so many misunderstandings in a moment with an autistic person, and one hopes that this marketing will help. I mean, we all have to survive, right? Adam’s survival is no different than mine except that he is at a clear disadvantage despite “neurodiversity.”

While recent autism advocacy is far better than I can remember 12 years ago, it remains services and employment based (and I am not at all suggesting we don’t need to do this important work to discuss services and accommodations past the age of 21…but we need to discuss this also in a much larger context). A discussion of the inequalities about which Davis and others speak must also be a topic to discuss the bigger picture of what we mean when we talk about inequality. Another part of this discussion might be to discuss all the the proofs that an autistic person has to demonstrate before earning a place at the school desk and in the boardroom – and a discussion why these suggest human value. These may not acquire the immediate services that people need but they are important to our evolution. We can do this while continuing to mine the various meanings of purpose.

“Weeds or Herbs?”: Eugenics Rhetoric Reinvoked

Filed Under (Activism, Employment, Eugenics, Uncategorized) by Estee on 26-11-2013

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I am end of term, writing papers on technology and autism using critical theory and my interest is how we invoke these to obtain work, to socialize, but also in how these shape our existence. While technology is said to open up avenues for communication, we do not heed the critical theorists warnings of Adorno and others – that there can be “no true life possible in a false world.” The question is, how do virtual realities and mass culture, mechaniziation and so forth limit the acceptance of autistic bodies among us? It seems that work to befit the body, not the body to work. This is also a feudal notion invoked by the company Specialisterne which is a software development company providing work opportunities for autistic people.

My job is to critique these structures and life is my lab. I am a mother to an autistic son as well as a single mother and I engage (and explore) in atypical forms knowledge production with my son – I attempt to resist the standard ways of producing knowledge that in fact are, to Adorno’s critique (my interpretation), relativist – that speaks only unto itself within a frame. That is, science speaks to science and we’ve adopted its rhetoric. As such, it may shape the way we think about our lives by this framework.

We cannot examine a system if we don’t try to work from without. So, when I go online to look at the company Specialisterne, which provides work opportunities for autistic bodies, it is imperative that we question how bodies may be vulnerable to exploitation in totalizaing “autistic charactersitics” as: “able to focus for long periods of time; superior ability to recognize patterns; superior visual perceptual ability” and so forth. While autistic people need to eat, and work provides important human connection (see “emotional labour”), we have to be cognizant that we are working within a system that reduces support, devalues disabled bodies and in fact, requires all of us to work longer and harder – in fact, like machines…automated…autistic. While these characteristics that may be present for some individuals, we have to be aware of how generalities about autistic characteristics may serve to oppress people.

That said, as I do my research, I was tuned in on the marketing of Specialisterne to ask if an autistic person is a “weed or herb?” (see Specialisterne’s banner above). If we are to speak, to anchor ourselves in frames of reference for how we have come to be where we are and to think about autism, we are obliged to point out that the term came from a eugenics book Weeds in the Garden of Marriage (1931) by George Henry Lane Fox Pitt Rivers. Using this object metaphor is also explored in this paper by Gerald O’Brien in Disability Studies Quarterly.

It might be helpful for self-advocacy organizations to engage in media and marketing monitoring to ensure that dignity, respect and the history of oppression is recognized, so that we may never again re-invoke the rhetoric which belonged to the eugenics movement which rendered the segregation and sterilization of disabled people mandatory. It is curious that marketing firms would not research this thoroughly.

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.

What Might Derrida Say About Autism and Language?

Filed Under (Activism, autism, Communication, Community) by Estee on 16-11-2013

Adam types, mostly independently, and also with various modes of assistance. Of late, he has developed his grammatically perfect sentences and I have to wonder about teaching the system of language. To most, this should be a heralded moment when Adam has joined us, society, in the shared system of social reciprocity. Yet I wonder about that term reciprocity. Is it reciprocal when we are a dominant group of language users? What of Adam’s own communication is considered valid? With learning our system of signs and signifiers, he will be able to join classrooms and other groups. I wonder about the validation of his body, his movements as asserting his being in society. I wonder if he will not lose his, for lack of a better way of putting it, metaphorical ways of speaking. This to me was representative of communicating a pattern of thought, perhaps translation, and perhaps a pattern of sensory experience; meagerly conveyed through our dominant language. In order to think this through, we have to consider how we limit experience by insisting on a form of contemporary autistic “oralism” (a term used for the Deaf/deaf, when they were force to speak instead of sign).

Adam also sometimes speaks. Sometimes he finds it hard to use words and “speaks” better through his body. This discontinuity, as it is often called, is referred to in the medical system as impairment or a problem. Speech in our society, we must remember, is also denotative of “rationality” which I continue to problematize. Derrida might not consider his speech discontinuous any less than language and rationality are (Simons, 88). Derrida says that without any gap between pages and letters, there would be no language or communication. So language is in itself discontinuous.

Adam’s meaning must be considered similarly. Without considering his whole being in the moment I could not weave a meaning. (And it should be noted that this should not be executed by only myself. I recognize I am a dominanat language user/speaker and I have to ask for various clarifications in a translation process but also have to be patient and simply watch and listen). Meaning is co-constructed, but the most important part of this that I want to convey is that often parents ignore this complex aspect of communication and maintain a level of expectation that no one autistic person will ever accomplish without a feeling of self-loss. Inasmuch as people should be praised for achievements, they should be praised for who they are. I also consider how this interactive view contributes to the feelings of impairment; that is, every interaction with others, mostly those fluent in speech (and who may consider themselves superior or normal as a result of being a political majority of talkers), contribute to feelings of impairment. There are a number of issues here, too long for a mere blog post, but let me continue.

If I follow Derrida’s line of thinking about language, there is no easy translation. I consider Adam’s typing a way of translating his thoughts into a system; I have to recognize that language limits the expanse of his thoughts, experiences and sensations. Like science, which is a system of thought and signs, we learn to frame a “problem.” We understand science by learning its language and it is primarily an encapsulated system which speaks among itself. It is here that I will reiterate a need to move away from science as “truth” as there are other valid modes of inquiry, much of which is already produced by those who are non-speaking. I am concerned also when fellow allies and autistics revert to this form of absolutism which has only oppressed them for many years. There are ways to take back the research and inquiry and IMFAR (among other science orgs) needs to respond to them too. I am reticent, as much as I support, a specific “autistic” advocacy as we know that language and labels change with time. How do autistic people keep their needed culture while at the same time co-organize across the many disabilities who share the need for respect, acceptance and inclusion (the latter word needs clarification but I will not do so here)? Many people labeled with autism prior to 1993 were placarded with dementia praecox, schizophrenia, mental retardation, to name a few. Labels are socially constructed, temporal. They are as diachronic and responsive to society as much as the rehabilitative and treatment methods seek to “recover” them. Yet they do share one characteristic which is political and social exclusion. Here, language as a system has played a huge role in how we regard and treat autism.

To continue with Derrida, discourse and meanings are shared and malleable (my word). Meaning is assembled across spacing/timing and interactive contexts. A text is like a textile, “produced only in the transformation of another text” (Writing and Difference, 279-80). The problem occurs in the behavioural and the sciences, Derrida would argue, when “provisional meanings are taken for definitive ones” (Simons, p. 90). Isn’t this what we’ve done? Isn’t this the way we continue to respond to organizations like Autism Speaks? In a Sausserean sense, we react to the constructed meaning, signifier of autism and we continue to validate it. In other words, by reacting, we also support the dominant system. In a political sense, I think this is important to remember when we respond. It’s not that we should not do so, but we must also think of ways of moving beyond this discourse as I fear we may only be continuing to support the current infrastructure that oppresses many people who do not fit the normal paradigm.

References:
Derrida, Jacques. (1978) Writing and Difference. Pp.279-80
Simons, Jon. Contemporary Critical Theorists from Lacan to Said. p. 90.

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?

The Autism “Campus” and the Ableist Potential of “Potential”

Filed Under (Ableism, Activism, Institutions) by Estee on 17-06-2013

Part of writing a blog and writing at all is the responsibility I tend to feel for supporting myself and others. Yet I have to tell you, since Adam was diagnosed with this ambiguous “autism” nearly 11 years ago now, anger and frustration and my love for him fuels writing and work – as it does for so many. Let me start here: we have a deeply engrained prejudice towards non-verbal people in our society, and towards those whose bodies don’t conform.

The reality is, this is not a black and white issue so if one says one thing, it gets reified (e.g. autism is x or he does this because of autism). The complexity of human BEING is ignored, especially for autistic people. As I watch Adam’s body tense and react to even the slightest pain (yesterday he hurt himself in a rose bush), these days with a bite, I am caught between feeling grateful for support but also upset that I have to be careful in how I question this support (for fear of losing it entirely… a crappy position many of us are forced into). Alas, we have to question it and everything that happens in an autistic person’s life to fill out the picture and to support and autistic person well. We need to do this all together – to look at the whole person and not the label and not all behaviours as the result of autism or as, well, just a behaviour. Adam’s body is intensely aroused and as this is happening at the beginning of puberty, I’m very worried about how long kids are asked to sit and comply. We must reconsider physical and behavioural compliance in the name of boys needing to be boys. This is recently called the “feminization of boys” and although gender-blame is problematic, it does point to an issue in how we approach education overall. Autistic boys should be considered in this respect as well. You can’t remediate before you respect. You’ve got to respect and include autistic kids from the beginning. Differential treatment also can lead to equality and respect. Differential treatment need not be remediation; it is the form of accommodation, acceptance and respecting sensory and other differences and needs.

This leads to another concern I have – so-called “autism campuses” being created. How does that serve the rights of autistic people to be included in society? Back in the day, an asylum was considered a wonderful refuge where disabled people could learn life skills, do work in “sheltered workshops,” be “educated” to their potential. It was a hopeful place where people would be treated “with respect.” Does this sound familiar? I don’t know about how you feel about it, but it reminds me of just how close we are again to re-institutionalization and the issue we have with notions of “potential” and “remediation.” There comes a point when educating to potential can turn into another form of ableism because it asks that a person become a normate. Potential doesn’t necessarily mean “as close to normalcy as possible.” Now that Adam is experiencing this intense arousal (and he has been already redirecting himself to an object to bite, without my telling him to do it), how will “the system” view him as a (non) person? Will our only choice be an autism campus? A thorny issue.

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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.