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

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.

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.

Goodnight Moon

Filed Under (Institutions, Love, Poetry) by Estee on 26-10-2012

Goodnight Moon
in the rocking chair,
your body cradled in the
safe bed of my arms.
Now your cherub cheeks
fall.
Soon a deepening voice
will sweep like a brushstroke
and we’ll forget

pointing tiny fingers finding little mice
tracing the arc of the cow
to our song;
a coterie

How can time move forward
in your face,
vibrate in your body
yet remain still in your room?

A page turns slowly,
please slowly.
Your head now fits
In the crook of my arm
before you sleep.

In the schoolyard
we play in chilly air.
Blustering wind tears leaves
like perforated certainty.

The helium voices chatter
on the opposite side of the park.
You silently climb the slide.

They found the same mice,
traced the same cow,
recited the same rhymes and
dreamt of red balloons.

Still now…
In a special school.
For safety?
Whose safety?
Maybe we are safe
I can’t say for certain.
I need more time.

Bulldozers nearby
tear down and
build up concrete progress.

What are we making?

Remember
the other little children behind locked doors
who never came out,
who never saw parents,
who were never cradled to goodnight,
who slept under the same moon.
Was it really so long ago?
This echoes.

Huddled are we –
rocking,
enveloped by quiet night
in our own peace.
Slowly, please slowly.
I will love you forever.
Goodnight.

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

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

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

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

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

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

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

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

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

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

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

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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.