buy tenormin online buy zovirax online buy diflucan online buy premarin online

The Creative Potential of Tourettes and Tics

Filed Under (Acceptance, Accessibility, Autism and Intelligence, Behaviours, Inspiration, Intelligence, Language, Movement Disturbance, Obsessions, seizures, Tics) by Estee on 11-11-2014

Adam’s body tics and his vocal tics now include an exceptionally loud OW! The vocal component began about a year and a half ago with grunting – I wrote a piece to be published about my perception and response to it for a peer-reviewed journal. As it was accepted with an editing requirement, Adam’s grunting turned to full-on screams and my attention turned to that as my role became to help him emotionally, but also amp up his accommodations and preserve his spot in school. This accompanied an angst at school which was swiftly resolved thanks to a number of people committed to him. As Adam’s communication by typing has concurrently advanced, it is an important conflation – between an expressive burst and the body’s struggle to produce it not only verbally, but also to coordinate every aspect of the body to produce it by typing. Part of Adam’s tics are evidently language and emotion related – charged and urgent expressions and also impulsive and involuntary. Both can occur. This is how I understand it so far and how Adam has expressed his experience to me.

You can imagine that struggling to verbally communicate, involuntary body movement, motor issues are challenging for him – a fellow who is bright, eager and intelligent. It is equally frustrating for him to be called on it or deemed behaviorally inappropriate or asked to be quiet; he was more often assumed to be not listening, learning or paying attention as he soaked up knowledge. Instead, he was discussed in terms of what others could see and understand – and a calling of attention to his tics seem to escalate them.

I welcome the following Ted Talk by Jess Thorn on the creative potential of Tourettes and tics, often experienced by people with other disability labels such as autism. If given agency over creative expression with them, how might persons often stigmatized contribute to our understanding of humanity? What kinds of knowledge that many of us who do not share these experiences might be shared?

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.

This is Our Halloween

Filed Under (Acceptance, Accessibility, Adam, Autistic Self Advocacy, Communication, Development, Family, Holidays, Joy, The Joy Of Autism) by Estee on 31-10-2014

_DK00868

We got up a little earlier today to rush to get Adam’s makeup on for Halloween here in Toronto. Adam decided to be a happy bear, so we came up with Happy Panda – it’s also a story about mindfulness that we sometimes read. It just feels right to show a happy little autistic guy, a preteen no less, who types to talk and gets excited like every other kid about Halloween. Adam is part of the whole process in deciding what he wants to be. Since Adam started typing at the age of 4, and is now 12, he has become more able to self-advocate and tell us a lot of what it is like to be Adam.

Here he is (below) inspecting my make up job… I must admit I wasn’t sure if he liked it when it was all done… and I didn’t have time to discuss it with him as we were rushing out the door. But he seems to be thinking about it here:

_DK00883

Alas, in this next shot, Adam is a Happy Panda posing for the camera. Today at his (inclusive) school he will go trick and treating around to each classroom. It’s raining in Toronto, so it is unlikely he will go out tonight with his dad… I’ll miss Halloween with Adam this year. It’s the first year ever I’ll miss it with him.

_DK00885

I hope all autistic families will enjoy their Halloweens if they want to. I never believe in forcing our kids to do things that are expected, but at the same time, I also believe in inclusion and participation in ways that the kids can and want to participate. I always tried not to expect too much when Adam was little. We stayed in one Halloween when he preferred to hand out candies rather than going door-to-door. That remains a really fond memory because Adam chose to do this and he enjoyed it so much. Before he could self-advocate with words, I gave Adam an array of choices, making costumes that reflected his interests. Since Adam was deemed hyperlexic and loved numbers and letters, I stitched letters and numbers to his clothes and named him “Alphabet Boy” – indeed my kind of superhero. This year, it helps a lot in all activities to make up our own social stories so that Adam knows what is expected, and I have him participate in writing them by making choices before decisions are made. This can involve all the steps that are made from ringing a door bell to what to say, to how many doors Adam can knock on so he feels a little more secure about how the evening is constructed. It’s also part of why I like the process of making Halloween costumes (although I’m not that talented at it, I still enjoy it) because it gets him involved and a chance to anticipate and be a part of any given event.

Two years ago, he wanted to be a ghost, and we managed to make together a Tim Burtonesque version… he loved that one; in fact I think he’s channeling Tim Burton again this year! Here’s a photo of that costume:

_DX07863

And another year, he fell in love with a cowboy costume from the store – he wore that one two years in a row:

photo

It’s been a joy to watch Adam grow and develop over the years. Having an autistic child is wonderful to me, the challenges included as they have encouraged me to think outside of the box. Let’s all make our Halloweens what we want or need them to be, and find our contentment with that!

_DX07915

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.

Humber College Denies “Ghost Tours” at the former Lakeshore Asylum

Filed Under (Institutionalization) by Estee on 29-10-2014

This is in regards to my recent post that Humber College, which used to be named “The Mimico Lunatic Asylum,” or the “Lakeshore Asylum conducts “ghost tours.” We have asked that the College discontinue the sensationalized tours that demean the experiences and the memories of the people who were incarcerated there. The denial and sensationalism of the wrong-doing here is disturbing. The response (see below) appears to dismiss the disabled and psychiatric survivor experience and seems counterpoint to the recent admission of wrong-doing by the province and a $35 million class action lawsuit won by the victims of the Huronia Regional Centre, otherwise known as the Orillia Asylum. The letter below from the College also does not have a sense of this gravity and does nothing to dignify the memory of those who lived there which we consider an uncritical approach.

Please help write and stop these tours as they are in order to respect those who passed there, and what they endured.

Here is the video promotion of their “tours”:

And here is the response (form letter) that many of us who are trying to stop the tours received from Wanda Buote:

One of your classmates also emailed me today. Our intent is not to be degrading but a vehicle to allow our students into the tunnels to hear more about the history of our grounds. Many students have asked for assess to the tunnels as they are fascinated with it and want to learn more. We only open the tunnels during Doors Open Toronto and Culture Days. Yes, there is some folklore associated with the grounds but it not something we focus on. The Lakeshore Campus has a much more interesting story to tell–one which surpasses illusion and fantasy. The event is called the Lakeshore Tunnel Tours and focused on the architectural and history of the hospital. Steve Bang volunteered his time, so that money raised could be given to the United Way. United Way is an amazing charity as it supports so many disadvantaged populations – such as youth, seniors, addictions and others that are facing barriers including the mentally ill. Humber is working hard to reduce the stigma around mental illness. We have come a long way since the 1800s but we recognize that work still needs to be done.

As a part of the tour, participants are provided with information about the original buildings, which would become our Lakeshore Campus, were once part of the Lakeshore Psychiatric Hospital. When the hospital opened in the late 1800’s, it was considered a progressive institution with advancements in moral therapy; patients were actively tending to the grounds, working on an on-site farm, and assisting in operating the facility. The apple orchard which many of the patients attended is still growing at Lakeshore.

As the hospital moved into the mid-1900s, insulin shock therapy was introduced as a form of treatment (Barc, 2005). As we continue to filter through archival materials associated with the hospital, we cannot ignore the conflicting perspectives of medical treatments and human rights. Without the technologies and knowledge that we have today, patients were often diagnosed and institutionalized for conditions as rudimentary as sun stroke. They were referred to by doctors as ‘stupid’ and other derogatory terms which are stamped on patients’ formal records. This history is not unique to the Lakeshore Psychiatric Hospital; it was commonplace language and practice which saw parallels at many other psychiatric institutions across Canada at the time.

Aside from these tensions, the hospital held a strong place in the surrounding community. Jem Cain, Humber staff member and local resident, grew up while the hospital was still operational. She says, “The hospital was part of the community, people were never afraid of the hospital or patients. Everyone felt that their kids were safe playing in the grounds since it was a beautiful park that integrated the hospital with the public”. When the hospital closed in 1979, the community respected these grounds and advocated to government to preserve its heritage.

Although the hospital was considered progressive for its time, we now exist in a very different context. This new context does not see this campus as the backdrop to horror stories, but thinks critically about the stigma and stereotype of mental illness. The Lakeshore Campus will open a new Welcome Centre in 2016, which will host an interpretive space about the campus history. It will be a place which does not hide, misrepresent or glamorize the past, but instead uses our history to create a broader community consciousness. It will look at not only the past, but be a place of active engagement where visitors can reflect on the present and envision the future.

Wanda

Wanda Buote, B. Ed, MBA, CHRM
Principal Lakeshore Campus
Humber College Institute of Technology and Advanced Learning
3199 Lake Shore Boulevard West
Toronto, Ontario, Canada M8V 1K8
Room A110, Tel. 416-675-6622 ext. 3332, Fax 416-252-8842

May we remember that as institutions close, we retain an attitude that is now witnessing autism “campuses” and other centres where people are segregated from society. Like the birth of the asylum, these autism and disability centres are often coined as wonderful and peaceful places for people to socialize, develop vocational skills and reintegrate into society – as forward-thinking by the non-autistic and non-disabled communities. When we forget what institutions were, the principles and values that gave birth to them, and the real abuses that occurred behind their walls, we forget the people who lived in them. It appears the Humber College Campus cares more about the flattened accounts of the people who lived without the institutional walls which counts as an act of erasure. As such, we will continue to see institutional rebirth in different forms and language (i.e. like the word “campus” to replace “institution” which can manifest in the same outcome). By doing this, we not only risk stigmatization, segregation and criminalization of people with cognitive and other disabilities and “mental health” issues, but we can guarantee it.

Institutions are not just places, they are attitudes. In this sense, they exist when one person exerts their power and privilege over another; where disabled people are grouped together without choice; and where, behind closed doors many abuses can be obvious or subtle – some under the guise of “intervention” and “remediation.” We live in a time when autistic and other disabled people still struggle for inclusion and acceptance. There are many barriers to overcome, and to many of us, they feel like iron mountains. Sensational approaches help to proliferate very dire consequences for disabled people and we are witnessing continued segregation that just gets easier with making people with differences “the other.”

It is important that Humber College reach out to the people who not only survived these experiences for their input, but also to the people working to restore the memory of these people and these places – like Huronia, The Burton Blatt Institute and our very own Geoffrey Reaume in Toronto with an expertise in the history of institutions in Toronto – just so we never forget. I hope that Humber does reach out… we want to work with you.

A Chance to Participate in a PhD Thesis:

Filed Under (Research) by Estee on 29-10-2014

CALL OUT

I am completing my PhD thesis on autism health care services in Ontario with a special interest in evidence-based applied behavioural therapies. I am a social scientist and so my project aims to explore some of the social and political implications of these therapies. I will be conducting a total of 50 confidential and anonymous one hour semi-structured interviews with practitioners, autistic people, clinicians, teachers, parent’s, diagnosticians, and policy analysts.

If you are interested in being interviewed, or would like to hear more about my project, please don’t hesitate to be in touch. If you are not interested in being interviewed but have some names you would like to pass along, that would be very much appreciated – but no pressure to do so.

Thank you,
Julia Gruson-Wood juliagw@yorku.ca

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

Wretches & Jabberers Screenings Are On in Toronto!

Filed Under (EVENTS) by Estee on 24-10-2014

I went to the first screening at the Geneva Centre for Autism Conference last night. “They should have screened thsi during the day,” commented two women from the school board. Indeed, after the Temple Grandin book signing, most people headed home. In the meantime, we were thinking how great it would be if Larry Bissonnette and Tracy Thresher could give a keynote at the Geneva Conference next year and how this would really expand an understanding of being autistic and intelligent – I use their words here to describe it in a way they do in the film

Yet do not fret if you missed last night because the best is yet to come! Larry and Tracy will be here for the weekend at the screening today at York University, Price Theatre at 4:30 and tomorrow morning at Toronto’s Bloor Hot Docs cinema at 9:30 a.m. And the other great thing is that it’s open to everyone for free – including whooping, moving, typing and effusive bodies! Adam will also come and if he can manage to stay, I’ll ask him if he wants to comment or ask a question. If you have autistic children, bring them along!!! I know that Adam’s confidence has soared when he meets his fellow adult typists, and he has been flying with his own typing in the last year. He wants to “meet the men who are the wretches,” he typed with a smile this morning. (It’s important to note that this is a title that the guys in the film came up with themselves).

Later on at school this morning, his teachers sent me what Adam typed: “I’m very thrilled to be a part of things…the movie is a very meaningful story because the characters believe that we mean labels have nothing to do with being autistic. I’m thinking it would be very meaningful to be a part… notice how happy i made this day. Please make me have a part…the reason Adam participates is because my thoughts are just as real as anyone looking to notice them.”

This is such a wonderful opportunity. Hope to see you and your autistic kin there!

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:

photo

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:

photo

Film Screening and Panel Discussion – Wretches and Jabberers in Toronto!

Filed Under (EVENTS) by Estee on 30-09-2014

Events_WJ_web

Join us at York University on October 24th at 4:30 and October 25th at the Bloor Hot Docs Cinema for a screening of Wretches and Jabberers with a rare visit and panel discussion with the film’s subjects with autism, Larry Bissonnette and Tracy Thresher. This is a unique opportunity for families, professionals and caregivers to learn more about their perspective of autistic adults who grew up without a “voice.” For more information/press release click here. The events are free admission.

Important October Events!

Filed Under (EVENTS) by Estee on 23-09-2014

Disability Pride March, Queen’s Park, October 4th at 1 p.m.

There are two events that are important for the autism community to attend in October. The first is Disability Pride March at Queens Park…meet at 1 p.m: Sign Up by clicking this phrase.

Film Screening of Wretches and Jabberers and Panel Discussion with Larry Bissonnette, Tracy Thresher and Director, Geradine Wurzburg October 24th and 25th:

photo

On October 24th, York University and The Autism Acceptance Project will host a screening of Wretches and Jabberers at the Price Theatre at 4:30 p.m. followed by a panel discussion. Please come to meet Larry Bissonnette and Tracy Thresher with Academy Award Nominated Director, Geradine Wurzburg!

On October 25th, The Autism Acceptance Project will be hosting the same screening and discussion at the Bloor Hot Docs Cinema in downtown Toronto from 9:30-12:30. Bloor Hot Docs will also screen the film throughout October, but make sure to come on the 25th to meet Larry and Tracy!

A New Beginning

Filed Under (Adam, Estee, Family, Friendship, Love, Single Parenthood, Transitions) by Estee on 15-09-2014

Adam on the move Adam on the move[/caption]

And so we moved again. It has been lots of hard work to prepare Adam for another (and final) move to our now permanent home in downtown Toronto. I decided to put everything aside to prepare him (and our new home) for the transition. This involved many social stories, visitations to the renovation site, weekly pictures and a reassurance that this was going to be a happy move. Our last move was a consequence of divorce and took its toll on both of us.

Adam had lots of positive support and a smooth summer at camp. I prepared calendars, reviewed them, we typed (talked) about moving all the time. I also made a calendar countdown to prepare with a symbolic punctuation to indicate our last day at our house; this involved letting go of four red balloons into the sky. On them I wrote: Mommy and Adam, Hope and Dreams, Bye Bye (address), and New Home.

photo (7)

Before the bus came to pick up Adam early on August 14th, we stood on the driveway on the sunny morning and discussed each balloon then let them go one by one. We watched them float high in the sky – the sun in our eyes – until they disappeared. Adam’s grin was wide and he jumped up and down a few times; my heart was heavy as it was giddy to see how well this was going. Adam seemed to be coping so well… not tearful or anxious as I expected him to be. In fact, I was floored when he typed about the move, “you are home to me.” Now that’s putting things into perspective!

Soon I would let Adam get on the bus and say goodbye for two weeks. Later that day he would go to his dad’s house while I prepared our new home for his arrival. The movers would be there on the heels of his camp bus, gutting our memories – of becoming a new kind of family from the new pictures on our mantel to Adam’s art that would make it our home. I wonder if I had made such earnest preparations to avoid the severe spasms Adam encountered during the divorce move; to avoid the heartbreak we worked so hard to overcome…and succeeded.

I recalled when we made another happy move – when Adam’s father and I built a new house and Adam participated in his weekly construction with frequent visitation to the site. There was one object I had left back in our, what I will call, “Rosemary House” (to do with the location) that I had to return to obtain. I was pregnant with Adam in that house. We had found out Adam was autistic in that house and endured hours of “therapy.” I was becoming the mother I was meant to be. It was old and rickety but it had cradled precious memories that are heritage to me (sadly the house was not and has since been torn down). The object I returned for was Adam’s bassinet which was mine as an infant. My mother worked hard to refurbish it for Adam and it was hand-made by my grandmother. Heritage was at least maintained in this. A light summer storm was brewing in the late afternoon as I pulled into the driveway and Adam, only a toddler, was asleep in the back seat. I left him in the car to quickly run in and grab the bassinet to put in the back of my van. But it was hard to leave the warm inside. There is a compulsion to stay in an old empty house full of memories even when it is stripped bare except for the dust bunnies that appeared like tumbleweeds in the desert. I remember standing in our bedroom, where Adam spent most nights with us, trying to review all the memories in fast-forward. I had to pull myself away to return to Adam, still unaware and fast asleep.

Perhaps we’ve now had too many of those moments ever since. As Adam’s bus turned the corner, the movers pulled in. They worked quickly removing boxes and our house was empty again. I vacuumed and cleaned it for the new owners but also because of gratitude and the love we built in that house. I felt the pull again to linger and remember how Adam and I learned to become our own family unit; how friends became our family there and how my parents Adam and I have become closer than ever. Adam and I did it – we pulled it together in that house. As I felt the tears begin, I abruptly left. It is time to move on…go, I said aloud. Time to move to our happy house, close to public transit and bustling life on the streets… and down the hall from my parents. It was part of my plan for Adam and his future being in the heart of transit and the city for his quality of life. It was fortuitous that it all worked out. So instead of preaching, I decided to lead by example: to leave quickly and look forward while paying respect to our past. Remember the red balloon that read: Adam and MommyHopes and Dreams.

A month later I can write about it. There is more to follow.

ads
ads
ads
ads

About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.