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

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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:

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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.

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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:

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

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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!

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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:

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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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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.