403 Forbidden

403 Forbidden


nginx

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.

Upcoming Events

Filed Under (EVENTS) by Estee on 05-07-2014

larry_large

I will be on the panel with the De Veber Institute for Bioethics and Social Research on autism this Thursday, July 10th at 5:30 p.m. at 280 Bloor Street West in Toronto. I hope autistic self-advocates will register early as well as those involved in Critical Disability Studies.

Also, stay tuned for more details on a screening of Wretches and Jabberers and a talk with the subjects of the film, Larry Bissonnette and Tracy Thresher; autistic self-advocates who type. This will be presented at York University on October 24th and also sponsored by The Autism Acceptance Project. Stay tuned for another event in downtown Toronto on October 25th!!

The Hunt for Humanity? Some words for Ivan Semeniuk, Dr. Stephen Scherer and Dr. Mohammed Uddin

Filed Under (Discrimination, Eugenics) by Estee on 29-06-2014

I came by your article in Canada’s The Globe and Mail, The Hunt for Humanity, printed on June 21st, 2014, a little late. To recap for readers, you suggest that your project, Brainspan Atlas research at Toronto’s Sick Kids Hospital (Dr. Sherer works in Toronto and Brainspan Atlas is located in Seattle) explores the exons – the series of “segments” (including intons) that make up the human genome, are involved in human evolution. In this exploration, Dr. Uddin, a computational biologist and geneticist, sits to author the computer code comparing the relationship between “sequenced exons from thousands of apparently healthy individuals” (Semeniuk, Globe Article) and those with “mutations.” Dr. Uddin looked to Brainspan Atlas data on exons “that were rarely mutated but highly expressed during brain development” and “filtered out” to distill the genes suspected of having a connection to ASD candidates – finding some speculated connection between exons and these genes which both Uddin and Scherer now study.

Without delving into the “science” of their work, let us consider the premise, for few science writers will begin any article with a discussion of ethics and disability. Interesting because when we read articles in the Globe and other news sources, one can’t write an article about autism or disability and ethics, without getting some remark from a neuroscientist or geneticist (I am leaving the rest of this sentence for the reader to fill). No…Dr. Scherer believes in natural selection. He says, “natural selection has sculpted these genes by tweaking their expression in the brain” (Globe). Darwin’s theory, adopted by Sir Francis Galton in 1883 laid the groundwork for an entire movement that institutionalized and segregated many from society and was the basis for the eugenics movement which separated people by their supposed “genetic soundness.” This was also the premise by which the Nazi’s killed the sick, mentally handicapped, and the elderly (before the Jewish population). One need only a lesson in history, picking up original text from the period to compare the language used by Semeniuk, Scherer and Uddin to see that the people involved in this project may be treading too close to a history we must not repeat. Terms used throughout the article such as comparing autism as a mutation – using the binary of health versus mutation or worse not human (this was implied throughout) – are dangerous in that they sway, with their power of position, the general public to believe that autistic people are less than human. The entire article does more than insinuate that autistic people are not human.

Says another doctor cited in the article, Dr. Varki, “…the children of a mating between humans and Neanderthals may have been physically healthy but ‘cognitively sterile.’ The disadvantage of losing the uniquely human genetic package, even to a small degree, would have conveyed a tremendous cost in terms of social interaction and reduced their chances of reproductive success” (Globe article).

The language throughout the entire article (if you can get your hands on it as The Globe and Mail now has a subscription service online), it is rife with dangerous language. Autistic people are compared to “non human” species. But worse, as I find with many neurologists and “autism experts,” there is a gross lack of knowledge about autism from autistic people and the people who live every day with the label, and the challenges of being different than what is supposed to be “normal.” This was very apparent throughout and also at the end of the article when Semeniuk writes:

“For Dr. Uddin, who has grown increasingly aware of the burden carried by those with ASD since coming to Sick Kids, the payoff comes from watching his ideas and his number-crunching materialize into something that may improve lives…’These kids often don’t talk to anyone, or have any way to express their concerns,’ he says. ‘As a researcher, I want to help if I can. It’s us, as a society that has to come up with our own understanding of how to approach this.’

Along the way, the bonus prize may be the ability to see what it is that compels us to connect – to get inside each other’s heads – in a way that no other creatures seem to do” (Globe article).

I’ll assume, Ivan Semeniuk, you are meaning that only humans communicate, and those who do not are not human? Have you met autistic people? Have you talked with them? Have you connected with any of them or have you avoided contact (or insisted that it only happen on your own terms)?

I’m asking questions here that must be asked of everyone involved in this field. I’m often surprised at how experts haven’t met many autistic adults, or read their work. This seems to me to be a prerequisite if you state you are going to work in a field, that you get to everyone who has a stake in the outcomes of your work.

Can you see how my son is very social and just this past week, despite his struggle in forming words, has gone with his friends to the Science Centre, the farm, out to restaurants and has been happy in being with his mates? Have you seen an autistic person, Dr. Uddin, not be able to forms words well, but can express themselves with alternate communication? Have you seen an autistic person type cogent sentences at the same time making supposed inarticulate utterances? Have you investigated the actual fact that the two occur simultaneously? How important is rhythm and support to the ability to communicate and what must we all do to appreciate the many ways of being human (certainly not a natural selection theory). Mr. Semeniuk, I’d love to talk with you about research and critical theory on linguistic theory and what I call the language prejudice. This prejudice assumes that if you can’t speak, you don’t think or don’t understand, which of course is not true. It might provide a more well-rounded article on autism, ethics and the prejudice in society about autism that we all must avoid.

This, by the way, is a first draft, unedited. I am writing from my mind and most importantly, my heart as both a scholar in the field of critical disability studies and a mother. I look forward to dissecting genetic science (and your work) and the premise of discrimination.

If you want to read the article, The Globe now makes you pay for it.

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.

Beyond Mall Therapy

Filed Under (ABA, Accessibility, Aides and Assistants, Anxiety, Autism Theories, Autistic Self Advocacy, Behaviours, Communication, Community, Inclusion, Intelligence, Language, Living, Obsessions, Parenting, Safety, seizures, Sensory Differences, Transitions, Travel, Wandering) by Estee on 21-03-2014

I think many parents will agree that one of the most challenging things for families with autistic children are outings.  Adam’s anxiety and repetitive activities increase over his perceived threats and fear of change; he will need to check out the bathroom in every restaurant; know where every door leads. This of course makes outings difficult, and it has a lot to do with impulse. At this point in our lives, Adam has been exceptionally tense – and I want to add that this coincides with his development, awareness and abilities too. This is a really important point to make up front in order not to treat behaviors by redirecting them in meaningless ways (such as touching your nose to replace a hair-raising scream…this will just piss Adam off). One of the dangers with partially-verbal of non-verbal people, as we know, is that when behaviors start, there is a propensity to exclude or treat the autistic person as if they are not aware of what they need, or what they are doing.

This is where adaptive communication has become very helpful for us since November. Adam has been typing for many years, but most ABA schools will not support supported typing – this is so problematic for folks with movement issues which Adam expresses – Tourettes tics, seizure-like episodes (and seizures are much more complex than one initially thinks), and “stuckness” which is catatonia. These are some of the reasons for speech impairments in many folks – similar to aphasia. It’s not that they don’t think or understand or even “hear”what we say but rather the word-finding and expressive capabilities through speech are not available. However with typing, Adam becomes more fluent in his speech. With support, he becomes, eventually, a more independent typist. In the meantime, he writes, “my body is like an engine that doesn’t run continually,”and despite that he can type some things independently he has asked for our support. To not give it to him is seen by many as immoral…something to think about in terms of our own learning in how to support people to communicate in order to hopefully become more fluent and independent. (While I have issues with this latter notion as a neo-liberal concept, I acknowledge we are swimming against a tide here and in order to survive, Adam has to work hard to prove himself…something else to think about in terms of how we treat the disabled).

So, to go out when a person has frequent anxious or bolting episodes (the fight/flight response as we know it), now requires perseverance, patience and planning, and a respect for Adam’s ability to participate in his daily planning. It also requires our time in letting him assemble himself if he begins to meltdown. For example, while on our March Break at the beach, Adam needed to go the bathroom. If there is a loud hand-drying in the bathroom, he will become anxious and turn right around. This anxiety lingered after the visit, and he began to flop his body on the beach. I told him to keep walking and tried to distract him, but at this point, it wasn’t working. I asked Adam to sit down until he was ready again to walk. As we did, we began to feed the birds. This made Adam happy and then able, after 20 minutes, to walk again.

Similarly, a week before on the same beach boardwalk, something triggered Adam and he wanted to urgently turn around. I could not understand what Adam wanted or needed so I asked him to sit down and type with me. This was difficult and he wanted to get up and bolt. I said he could not get up until we knew what he wanted. As he began to type, he was able to say what he wanted faster -”hot air balloon.” At that point, I realized that there was a water tower that looked like a hot-air balloon far down the beach, however, I miscalculated just how far. As we began to walk, it was occurring to me that we wouldn’t get there on foot. But Adam was so happy and relieved to be understood, and skipped merrily alongside his grandfather and I. I began to say to Adam that  I didn’t think we would get there on foot, so at this point I was able to negotiate with him that we would go to dinner first and then drive by the “hot-air balloon.” Adam was able to have a nice dinner and also get to see his hot-air balloon on the drive home.

Today, my team are helping Adam on his outings with lots of preparation and photos and are working with me to practice outings with Adam in many places so Adam himself can feel more competent and less anxious. Every day while we were away, I insisted on taking Adam out, with someone with me for safety, because I fear that isolation is deadly.  This is where mall therapy begins but also has to end – so often, we only see autistic kids in places where therapists feels safe, and this sadly restricts the lives of many autistic folks. Some parents might be afraid to be stared at in public. This is when it’s better to have a card to hand out to people indicating that your child is autistic and you are working on outings. Or, if someone is exceptionally helpful, as I’ve experienced lately, send a thank you note if you can to support inclusion. While we may begin with mall therapy, we must move on quickly. As I was preparing Adam to see the animals today in the park, he typed, “seeing animals is getting very tiring,”and he asked to walk and take the subway instead.  This part of negotiation is also key to success for outings as people like Adam have a hard time advocating for themselves (although they do communicate with their behavior, which is largely viewed as maladaptive, sadly). I also have asked Adam how to support him in moments of need or meltdown where he wrote, “please be calm…” and indicated that these moments are also very embarrassing for him.  In addition to a bag of tools he has to help himself and cognitive behavioral therapy (which, by the way, is typically used on people who are verbal and are deemed “high functioning”‘… Adam’s ability to learn the concepts and techniques quickly rules out theories on HFA and verbal ability and the ruling out of such therapy for non-verbal people…I hope a researcher who presents at IMFAR will pick up on this as most of the people used in research study tend to be from the HFA/verbal group due to cost and time constraints…something to think about in terms of who we service, who we value, and how we treat autistic people).

So the question is whether the mall is used to simply used to truly help autistic people be included in the world, a step towards many outings and environments, or if it excludes people from being in the world. Yes, it’s a challenge for folks, and in the end, a person decides for themselves where they want to be. But if Adam doesn’t learn now as well as being able to advocate his choices while learning to negotiate with others, our lives will remain behind closed doors. While I know this is hard for Adam, I also know that he doesn’t want this.

 

 

 

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.