There are days when I feel so grateful for the support Adam and I receive from the team, friends and family. My university is so supportive of our needs as well, allowing me a leave so I can lesson-plan for Adam and train him more in language and typing. With support since he was around five years old, Adam is now somewhat independent when conversations are not that open-ended and unclear. I can hand him a keyboard anytime and he can type his feelings or what he needs sometimes faster than he can speak the words. I also learned that animating words makes them meaningful and is better than rote vocabulary instruction.
Adam, as a hyperlexic individual since we could hear him speak at 11 months of age, loves letters and words. I am going to work with my son’s strengths. In so doing, I am training others in the process. Others watch how I do this with Adam and also learn to do it with him. I have no formal training other than personal study and my PhD work which focuses on semiotics and language and disability. This is my passion because of my son.
Adam is heading into puberty and has issues with anxiety, but seems most frustrated at not being able to say what he wants to say. When he gets the words out, he says them forcefully, looking into my eyes and saying the phrases again and again until I say it back. He knows I’ve understood him. I think it’s the way he’s been treated all of his life by us jabberers (dominant ordinary language users) in that we tend to repeat ourselves to autistic people who have trouble with ordinary language because we think they don’t understand us. Adam is doing what we have been doing to him. When I say the words back, echo him, he is satisfied that his message is understood. Phrases like, “I can’t wait anymore!” can be met by me with an acknowledgement and a timer which settles his need to know how much longer he must wait for his desired activity or item.
Also, operation calm down has worked. Adam is happier, the screaming tics abated. Following the stress and episode, Adam always emerges with more sentences (communication). I’ve yet to hear anything from the neurologists on it, but we keep trying just in case. This is not to “cure” the autism as much as it is to ensure that Adam’s health is attended to well; that we are not missing something. The health of the autistic person must be attended to as much as the non-disabled person. (Another topic about how to regard the autistic person might be better sought from autistic people themselves).
It was as if Adam was saying “please listen to me!” and we have. Some of it was because he didn’t enjoy a transition and the team and I will be working on this all year. That said, Adam is fairly flexible all things considered. We haul him on our travels, and I plan on taking him on many no matter what. I believe in respecting his difference and limitations while also helping him through without pushing too hard some days and knowing when to push because those days are so apparent. He loves to be with other people and to see new things. He loves being out in the world and engaged. It’s in the manner we engage him that is important to expand his horizons. I want to thank my university for supporting us in making this the best year for Adam and I. Without the understanding of schools and universities, we might never be able to do this important work that does effect so many people with disabilities in that not every year can be a consistent, machine-like operation. Sometimes we need to step back and focus on our children, or our own disabilities. I am overwhelmed by my school’s support. Thank you York University! I look forward to sharing my copious notes and experiences from the journey this year.
As for Adam this year, my mantra has nothing to do with compliance. It is about cooperation, engagement, respect, “muchness,” connection and yes, joy. Adam’s learning can’t happen without these principles.
It’s the end of the term…I need a long break and so does Adam. His anxiety went up as soon as the clocks turned back. The darkness brought about a new mood, Adam’s ticking went off the charts and he started a new tick – a screaming tick. He wasn’t happy – he couldn’t stop it as the pressure mounted on him to stop. I felt pressure in trying to help him, because let’s face it, screaming disturbs the peace. It’s alarming. With it, Adam’s flight-fight prompts him to bolt when he sees pathways and stairwells. These are all the signs that Operation Calm Down had to be put into effect. By virtue of naming it so, it’s not the first time we have implemented it.
Dad took Adam on a short vacation and this allowed me to have one too. On my yoga vacay, I met another dad with an Asperger’s son. He too mentioned that his son ticks and these anxiety attacks, let’s call them for now, make it difficult to get back to schoolwork. His son’s grades are going down, he said. So too, autistic autobiography reiterates the length of time it requires to self-regulate…sometimes days. Although I’ve been busy with PhD study, I realize the patterns of Adam’s distress tends to be at regular intervals during the year, and after sickness. Now that his body is changing as well as his needs, I am considering a leave-of-absence to help him, but also to help myself in so doing.
In thinking of Adam’s life and the very complex anxiety he has, his motor-planning difficulties, his frustration so apparent as he tries so hard to talk (the other day he got so frustrated, he picked up a pencil and in his chicken scratch wrote that he wanted to go to “gramma’s house”), we can’t always expect a learner like Adam to spend day-after-day exactly the same. The seasons change, there are new anxieties in life and we all need breaks. This is one of the most fundamental obstacle I can think of in how we teach children in general – in chairs for too long, in small rooms, with little outdoor exercise because of liability issues. It’s not one person’s fault, per se. It’s how we’ve built our society. We live in cars, in buildings and we don’t get out much. If Adam had an outdoor learning environment as a major part of his learning experience, I think he would be able to take in much more (outdoor education is decreasing but can be made accessible to people with disabilities). In the summer with lots of activity, for instance, he can talk more – and this is a feat for someone like Adam.
It is therefore very difficult to be talking grades, assessments, intelligence and so forth without recognizing that, living in the settings that are the way they are, that my autistic son will be delayed in his learning. The focus is far to much on intelligence (or ideas about intelligence) rather than somatic knowledge, difficulty and other ways that we can learn. I know this because when Adam is “on,” and there are adaptations to his learning, he can learn. I am writing in these terms because when looking at sites or articles about autism, the terms and ways of thinking about intelligence and learning are so “matter-of-fact” or normalized that we forget about how other kinds of learning can take place. This makes so many people, the forgotten ones. In essence, I’m trying to move away from a linear model of development and learning which doesn’t work for many people.
When the body has to spend so much time readjusting and becoming comfortable, the rest of the school work (at a desk in a chair…) has to be put aside. It would be wonderful for schools and educators to think about this a little more – to integrate movement into every aspect of the day including field trips and outdoor activities – even in inclement weather (my parents never protected me from it). I fear with our autistic children in Canada, that we are growing more back towards re-institutionalization in a different costume; we segregate and we isolate in order for our kids to be “safe.” In this, I appreciated mother and author of the book Spark, on her autistic son, namely, her “philosophy of muchness.” Never stop exposing (even with ticks, flaps and screaming) autistic children from many things – theatre, music, the outdoors, and accept the difficulties and make room for them.
We need to change the way we look at the length of education – since not all bodies cannot finish high school by the age of 18 (or 21). What other modes of education might we employ? Considering this is not as much an “intelligence” issue (I hesitate because I do not like to promote intellectualism which I find further separates people) as much as a somatic one.
Which leads me to some new revelations for me as a mom: that Adam’s “voice” is a part of his growth. It’s hard on me to watch him in a kind of pain from which he can’t escape (sometimes the ticks are a loop he can’t stop and sometimes they are willful – one “behaviour” can serve many different purposes) but also, I want so badly to give him the tools he needs so he can gain some latitude in his life. His life is so restricted with people always watching his every move – and this is, as I mentioned, for safety reasons. I often wonder, if given a great expanse of land to explore, could he feel better? What will his choices be for how he needs and wants to live his life? How can we support that? How do we stop protecting (or at least let up a little) in a dangerous world? I am certain some of Adam’s stress comes from having very little autonomy, and although he is strong and willful (which I believe will bode him well), if you can’t communicate fluently in our society, or you can’t cross the street by yourself, your autonomy is limited. This, of course, is where the concept of supported-decision making and assistance comes in, but assistants (and parents) really need to understand this and how to be good listeners (for some reading, look to Val Williams’ conversational analyses between caregivers and non-verbal individuals). Think of the life-skills training in addition to the education that our children also deserve. This takes more time than the allotment prescribed during the Industrial Revolution. I mean, it’s time to move on.
Then there is the need to reconsider how we look at behaviour from the outside. This is a problematic approach because we cannot know how Adam feels on the inside, yet we have lots of autistic autobiography to help us. When we tried redirecting Adam with a behavioural approach, this enraged him – he smashed himself into the couch and crumpled the paper from his Zeotrope in his little fists and threw them to the ground. The basis of this was to get Adam to stop screaming, but it did not account for the fact that he perhaps could not stop. This is the same for Tourettes (which I think Adam “has”) in that if you call more attention to the action, it will increase it. Instead, deflecting to relaxing activities seems to help more in addition to the sensory (deep pressure) that Adam needs.
An and calming approach worked much better than a behavioural one – this is what has to be done before we can teach any lessons – social and academic. Social stories and cognitive behavioural training are now a part of Adam’s week in addition to us seeking more adventure for him – rock climbing, circus arts and swimming. For CBT, another boy character is inserted into social stories to take the attention away from Adam. This way, Adam can relate to the character without feeling targeted. I gleaned this from reading Donna Williams’ Exposure Anxiety, which makes a lot of sense where Adam is concerned.
I fully believe after 12 years of being with Adam that seeking cooperation through engagement is our obligation, not his because he is still learning. He is a child who wants to learn, but we can’t do that by mere compliance. He complies when he is respected and engaged and also knows the rules (teaching boundaries respectfully will be our new challenge). I’ve started teaching three key concepts in various formats and in daily life to Adam – cooperation, patience and gratitude. In teaching Adam these concepts and ways to enact them in daily life, I also have to do so towards him. I’ll let you know how it goes.
Puberty will be challenging for Adam and for me. I am protective mother noticing the need and beginnings of separation. On the one hand it seems that Adam needs his structure and certain environments especially when he is feeling uncertain. On the other hand, he is truly becoming a teenager who is showing more signs of frustration and wanting to expand his world (this is different than bolting or escape but could be sometimes related). These may always be competing impulses in him, I don’t know. All I can tell is that they both exist within him. How do I give Adam boundaries and his own need for control over his own life now and ensure his safety? I’ll keep you posted on how this goes too.
This is Adam’s best friend. Aside from going back to camp this summer, which he is able to do with an assistant, this is the friend who Adam spends time with. We recognized it was a real, unscripted friendship when the two of them preferred to play without words, to roll around on the floor, or when Adam would lead his friend around the house to show him things. His friend is verbal and not autistic and seems to understand and have compassion for Adam, and I believe the feeling is mutual for Adam towards his friend.
There have been lots of events this past week, most importantly the decision to send him back to the school he attended two years ago, which is not an autism school, but a school for all kinds of wonderful kids. Adam had good friendships there; we could make adaptations in the way work was presented; he could show off his skills and he especially enjoyed the mentoring program when the older kids would teach him. There, he made lasting friendships that have stood the test of time – the same friends attend his camp, and they enjoy each other’s company. His typing stories is getting stronger this summer with our daily practice, and helping Adam with schedules and learning to be patient with me (I’m a single mom… I need his patience) is another important lesson he’s learning with success. Let’s just say, I’ve made these things my mission and I find when I attend to them carefully, we generally do well.
Here’s an example: Every weekend, he wants so badly to go to his grandparent’s house. There, he is soothed and served by my mother. My father gives him strong hugs and takes him on his long walks and subway rides. How could he not love the attention and understanding he receives there? (In fact, he loves them so much, I’m going to ask the TTC if they will take us on a special learning tour). If I don’t take him and I don’t have a plan, he had been getting quite distraught with me. I decided to let it be. I broke part of my foot on Friday and couldn’t do everything he asked. This prompted a teaching moment.
“Grandma’s house,” he demanded on Saturday, looking at me with determination in his eyes. I was a bit nervous he would bite his wrist if he got angry with me; he wears a chewy tube or heart around his neck so if he’s inclined to do so, he will choose that now instead.
“We can’t go today. We’ll go tomorrow,” I said, thinking whoops – that’s an abstract concept and I’m not sure if tomorrow could wait. What is tomorrow when we want it now? I tried making a calendar, and since he can read – I simply wrote in the plan for the days. We went through Saturday, then Sunday…
“Grandma’s house,” he said again emphatically.
“Not today. First we will eat lunch, then we will go for a drive,” I declared, thinking of my foot. Adam got out of the chair, he was sitting in, and I wondered what he was going to do next. Then, he walked towards the rotary phone I bought – to gain his interest in making telephone calls, since he seemed averse to talking on the phone. He picked up the receiver and began dialing. I quickly held up grandma and grandpa’s phone-number, just to make sure we weren’t calling Australia. He put his finger in each hole and dialed each number carefully. He began speaking into the phone, without my assistance.
“Hi,” he said quietly.
“Adam, may I listen?” I asked, knowing that my folks weren’t likely to be home. Sure enough it was the answering machine. “Okay, they’re not home,” I said to Adam. “Let’s call grandpa’s cell phone.” I held up the number for him to follow again and dial.
“Hello” he said into the receiver. Again, I did not know what was being said to Adam, or if anyone was even there. “I’m fine,” he said again. “I love you….can… I… go…to…your…house?” he asked softly, speaking each word deliberately.
“Adam,” I interjected. “May I please speak to grandpa?” I took the phone from Adam to ask my parents where they were and indeed, they were not going to be home. I asked if they would please tell Adam themselves (they were in the car on speaker phone).
“Tomorrow” I heard Adam say softly and he began to whine. “Bye.”
I was elated that Adam made his first phone call by himself. After that, we were able to follow through with the day without a hitch. I asked him if he wanted to go for ice cream, it went so well.
I waited for a bit. Then Adam declared…”White!” I realized that someone told me he had tried lemon once and really liked it.
“I think white is lemon, Adam,” I said.
We drove to the frozen yoghurt shop and indeed, he loved lemon.
So today, with my broken foot, I sent Adam along with his friend to Canada’s Wonderland where they shared rides and won a couple of prizes. I’ve been thinking of the typing, the relationship we share when we do it together, preparing Adam the way he needs to be prepared, and Adam’s strong desire to connect. I think when I spend more time with Adam typing and sharing, and when he can spend more time in sincere relationships that aren’t always highly verbal and difficult for him, he is a happier kid. Then, as I finished my Master’s Research Paper (more or less) today, I was thinking of Larry’s line in the movie Wretches and Jabberer’s when he speaks to Tracy about their trip to Japan and Sri Lanka, and they’re in dialogue about how nice it was that they traveled together: “Larry loops twice on that loving fellowship feeling.” Indeed, there is something about the summer that triggers these feelings -perhaps it’s simply more time – and I’ve learned how important these feelings are…all year long.
TORONTO, May 7, 2013 – The Law Commission of Ontario (LCO) is beginning a new project at the request of the Ontario government to address how adults with developmental or mental disabilities might be better enabled to participate in the federal Registered Disability Savings Plan (RSDP) created by the federal government without an expensive competency assessment.
The RDSP is a savings vehicle to provide future support for persons with disabilities. Parents or guardians may open an RDSP for a child. However, adults with intellectual disabilities and others whose competence may be an issue may face challenges in opening or withdrawing from an RDSP without undergoing an expensive and lengthy competency process. “We are extremely pleased to be asked by the Ontario government to undertake this project,” said Professor Bruce P. Elman, Chair of the LCO Board of Governors. “It reflects recognition of the high quality of the LCO’s work and its contribution to law reform in the province.”
The LCO will draw on work in two prior projects in which it has released final reports, its Framework for the Law as It Affects Older Adults and its Framework for the Law as It Affects Persons with Disabilities. It is currently undertaking a large project on capacity, decision-making and guardianship from which the RDSP project will benefit. The LCO will also call on the relationships with legal and academic experts and community members developed in the process of the older adults, persons with disabilities projects and capacity projects.
Launched in September 2007, the LCO is funded by the Law Foundation of Ontario, the Ministry of the Attorney General, Osgoode Hall Law School and the Law Society of Upper Canada, with additional financial and in-kind support from York University and support from the Ontario law schools. It is housed in the Ignat Kaneff Building, York University. It operates independently of government to recommend law reforms to enhance access to justice.
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Law Commission of Ontario
Inclusion Day at Ryerson University: July 6, 2013. or visit www.taaproject.com for a better view:
As we head into April, I thought I’d post Protest on the Plinth which states that the value system from the Nazi era hasn’t changed much today. If people make out disabled people’s lives to be “intolerable,” then how can we make safe legislation?” asks the disabled woman in the video. It is not egregious to point to what happened to the disabled during the Nazi era and unpack the value systems that linger today – that lead to the belief that disabled lives are an intolerable economic burden on society. Posters of the “costs” of the disabled to the German “folk” were commonplace.
Systemic mechanisms (government programs, schools, corporate bodies) that tell us what kinds of bodies (and minds) we are supposed to normalize, regulate, or get rid of, or what are “acceptable” minds and bodies. Charity campaigns don’t typically tell donors that they need to be patient as corporations or as individuals; that they to collaborate with disabled people, work alongside people with disabilities, or that it is a disabled person’s right to be educated (instead of remediated as a “ramp” to normative education -see Moore v. British Columbia, 2012). They don’t talk about autistic and disability rights. Charities are busy raising money, mainly, for cures.
When scientific and representational linguistics point to children “at risk,” we might instead ask, just who are we trying to “keep safe” and why is society so dreadfully afraid of people with disabilities? Remember to consider language and how it both reflects, and shapes, the way we consider people with the autism label. From where I’m standing, however, we are definitely at risk, not from autism, but from an intolerable society.
The purpose of the title is from historical readings that the disabled in history were displaced and living on the margins of society. Who were considered/are considered valued members of society? Socities have been obsessed with placing the disabled into a variety of contexts that justifies human existence, or fears (demons, monsters, mad, deviants) making the normal the privileged members. Without a comparative measure, as it were, what would we humans deem ourselves to be?
I have a series of questions that I’ll be considering (probably for a lifetime). Feel free to try and contribute thoughts in the comment box.
Pro/claiming Autistic Identity:
Is claiming biological identify leading to another possible eugenics movement? Is there a danger to biological self-identification? How important are self-identification and self-advocacy and pride-movements?
Are pride movements perpetuating the dis/abled dichotomies that already oppress? Do you think they have a positive purpose? Should there be a point at which we stop advancing pride movements, in other words, move beyond them? When is a good time to do so?
How important is the label autism to accommodation if autism is a social construct? (It is). Where “special” and enforcing “inclusion” have already proved challenging, maybe even impossible thus far, is it so because we continue to place the disabled out of the confines of the norm. In other words, are we continuing to perpetuate a false dichotomy that does little to value and serve, but more to segregate and isolate? By wanting inclusion, we are saying we are excluded? Does this stance further the goal itself, or not any longer?
Who Gets To Produce Knowledge About Autism?
The DSMV, behavioural analysis and observation, and the categorization of people.
Who gets to diagnose whom? Who gets to produce knowledge and categories about autism? In the past, and to a large extent today, it is non-autistic or “normal” people and we now witness a gradual inclusion of disabled “voices” to this mix. Do disabled individuals appropriate notions of impairment and abnormality enforced by long-held categories made originally by people who have not had disabilities? After all, autistic people are still largely tokenized minorities among autism charities, autism committees, and as participants in autism research studies.
Accommodation and Acceptance:
To what extent is the citing of needs/impairments an important part (or not) of acknowledging that we are all part of the abled-disabled continuum, which herein, I have already parsed?
Do you think the term autism and/or disability will exist one hundred years from now? Or are we a society that simply wears the same dress, just in different colours?
Have we learned anything from autistic self-advocates that assist us to simply accept autistic individuals and value the right of all people to exist, be educated, and be valued, no matter what level of disability, in society?
Utopias and ideals have perpetuated individual and societal notions about what we should be – what we are versus what we aspire to be. To what extent may this continue to be a driving force (as in survivial of the fittest) under an capitalist/economic lens, and where are we now with this “force” in viewing the disabled as part of this? As disability has always been a part of human existence, despite eugenics movement’s attempts at normalizing society and eradicating “deviant” people from the norms, how far have we come to accepting, embracing and valuing human difference? After all, while the eugenicists caused great harm to many people, and have continued to do so as a legacy, they didn’t succeed in eradicating human difference.*
*In reference to the eugenics movement from Davis, “Constructing Normalcy” in Enforcing Normalcy: Disability Deafness and the Body, pp. 23-49, 1995:
“The conflation of disability with depravity itself expressed itself in the formulation ‘defective class.’ As the president of the University of Wisconsin declared after World War One, ‘we know enough about eugenics so that if the knowledge were applied, the defective classes would disappear within a generation.’ At it must be reiterated that the eugenics movement was not stocked with eccentrics…Rockefeller, Churchill, Roosevelt, H.G. Wells, John Maynard Keynes”…among a longer list. Some food for thought when thinking about such questions.
I love my City of Toronto where I was born and have lived for most of my life. I’ve lived on the outerskirts and downtown and midtown and I never loose interest or discover new pockets of Toronto. I never liked “bedroom communities” and I don’t thrive well in them. As an art curator, I used to cite the many aesthetic issues as well as social consequences of bedroom communities when I had my own newspaper column, even though most of us don’t have any choice to live in them, as was the situation with my family. Others claim they prefer not to live in “the big city,” and that’s fine too. For me, however, I enjoy being able to walk out the door and take a few steps to the corner to get what I need, to walk or bike to, and be among people. When I talk about my city, I’m really talking about community and there are many notions of community that are important in discussing inclusion and people with disabilities.
After a divorce, I had to move back uptown. My partner and parents live downtown and I am backing-and-forthing. I’ve envisioned Adam’s future downtown, where transportation is accessible, where the chances of having employment could be easier because of accessibility to them; where support in the way of people may be more readily available, and for him to also feel a part of the daily pulse of life among his fellow citizens. I take it for granted, perhaps as a matter of necessity or as a premise unto itself, that he is a valued member of this community, even though we encounter many barriers and prejudices — sometimes subtle and other times overt. It’s an ideal, of course. At some point in the near or distant future, when our lives don’t demand the need to be uptown, I will move us mid or downtown again. Accessibility and being with people is key for me, my vision for Adam, and for our growth as a family that fit with my values.
Along Christie (it’s a street in Toronto), a quote from Jane Jacobs remained unfinished graffiti on a cement partition along the sidewalk. For nearly a year, only half the sentence was written, waiting for someone to bring a can of spray paint and fill it in. “Cities have the capability of providing something …” I felt compelled to drive up and down Christie for the past several years not only because it seems to be one of my favorite areas in Toronto, and one of the first points of arrival when my dad immigrated to Canada, but also because I wanted to see if the sentence would ever read complete.
About this time last year, someone filled it in, but it was incorrect. A few weeks later, it was erased. I waited again and kept driving. In the true Jane Jacob spirit, the practice of finishing the sentence, albeit a quote from her, had to be accessible and inclusive. (Thank goodness Mayor Rob Ford’s attempts at erasing all graffiti from the city didn’t strike this wall). Finally, a few months ago, the sentence was completed:
“Cities have the capability of providing something for everybody only because, and only when, they are created by everybody.”
The notion of creating and including everybody is appealing to me, and I gather for this reason, an idea was germinating. How can we cooperate and create our communities that support and include autistic people? Is there a way to use Jane Jacob’s model and discuss the pitfalls and possibilities of creating what we need for ourselves, outside of the systems that can sometimes oppress us? Is there a value to doing both? These are some of the questions I have in disability policy. I’d like to use this blog as a little laborartory for discussing these ideas, and for practicing them.
I used to adore Toronto. As an able-bodied person, it was relatively simple to get around and I appreciated having access to all Toronto had to offer. I didn’t pay attention to the lack of elevators, escalators and ramps. I am 30 years old and have multiple sclerosis now. I am no longer able-bodied but disabled. These days I use a cane or walker to aid my gait, making uncomplicated things more demanding. I now despise Toronto due to its lack of accessibility. I miss the things I once loved and want to enjoy them again but I cannot because establishments are inaccessible. Why am I being penalized for a disease that caused me to become disabled? Why is this kind of discrimination allowed?
His article highlights the ideas of various civic leaders and thinkers and some of the issues that confront people with disabilities in cities. One of them he cites is Iris Marion Young, the author of Justice and the Politics of Difference to present a series of interesting premises’ in the creation of accessible cities/communities:
“In the city,” writes Young, “persons and groups interact within spaces and institutions they all experience themselves as belonging to, but without those interactions dissolving into unity of commonness” (1990: 237). Several premises are contained in this statement. One is that people, as individuals and in groups, have the capacity and opportunity to participate and interact with other people. A second is that sufficient and accessible public spaces and institutions exist throughout cities to enable the being together. A democratic politics, Young stresses “crucially depends on the existence of spaces and forums to which everyone has access” to participate — to speak, listen and bear witness (1990: 240). A third premise is that such interactions generate common experiences of belonging, a basic component of citizenship according to most commentators on the topic. Certainly, for people with disabilities, these public spaces require supports, services and likely adaptations to enable all to speak, to listen and bear witness, regardless of their abilities and capacities. The fourth premise is that individuals and groups participating in such public places and institutions are able, at the same time, to maintain a sense of their own distinctiveness, special status or group identity. Perspective 4 therefore contains, as do the other perspectives, a number of empirical perquisites, behavioural expectations and normative claims.
While the ideals of Jane Jacobs may not as of yet have reached our cities and communities, I think her notion of “creation by everyone” is a vital link to thinking about how we build them.
Attending IMFAR for me this year raised many more questions, if not affirmed some of my assumptions about the extent (or not) to which autistic individuals are involved in research as well as autism organizations. While more autistic people may be in attendance at conferences, or may sit as board members, issues about “tokenism” arise; to what extent do we enable autistic individuals to create a meaninful autism agenda? That is, who is establishing the questions about autism to be researched? Who is directing the goals of an autism organization?
Temple Grandin spoke at IMFAR at Toronto this year by webcam/Skype. She urged autism researchers to look at issues effecting autistic quality of life, rather than more studies on “face recognition.” Yet she did not acknowledge that many of these researchers are, a) not autistic or, b) do not practice emancipatory or participatory research. Was this done for politcial reasons, or was it a gentle nudge to send more accepted research paradigms in directions that may be of use to autistic people, or perhaps an oversight? By definition,
“Emacipatory research (that is research which seeks to alleviate oppression) is critical in exposing the mechanisms for producing, maintaining and leigtimising social inequities and domination.” (Ayesha Vernon, “Reflexivity: The dilemmas of researching from the inside” in The Disability Press.)
My assumption is that while Grandin is urging the researchers to reflect on what is important to autistic people, the model is more challenging at IMFAR which is largely based on a non autistic view of how autistic people think, perceive, function. The research was largely targetted to the “high-functioning” autistic population, likely, because this was the most effective, cost-efficient and timely way to complete the research projects. They did not employ emancipatory methods which may not use more common research designs. It is non autistic people largely determining what’s best for autistic people and the balance of power is clearly skewed — it is the researcher directing the goal of the reserach and the relationship of researcher-subject is established. Some quantitative research by autistic researchers has been presented at IMFAR, and we do need more in support of the issues and needs that are produced and articulated by people with autism. As non autistic people, charity organizers and researchers we have to acknowledge when we are looking from the outside-in, and consider changing our approaches in order to provide services that are directed by the autistic community.
Issues arise when thinking of involving autistic participants in establishing the research question, or the agenda of an organization. Sitting on boards with non verbal participants with significant challenges, non autistic members have to exercise patience and understanding with the length of time and the various outputs that enable an autistic person to participate, as an example. Some individuals communicate by typing very slowly, or using other text-to-speech devices. For others who do not have an organized communciation system, the issue of involvement and later, dissemination of the research that is useful to autistic people becomes complex. Some have worked around the issue by stating that the autistic with the more proficient communication system is at least accomplishing part of the task of inclusion. We have to work on offering solutions to participation and autistic direction.
As the founder of The Autism Acceptance Project, I experienced these tensions of working as a non autistic person in an autistic space and tried to resist controling the agenda, and admittedly while I sought a lot of direction from autistic people, this was very difficult to do. As an organized and fairly driven person, setting my own assumptions aside still requires me to slow down and think about my design of the TAAProject website: from to how to include autistic individuals in a way that they can direct the project while using my skills, and theirs, to developing the tools to perhaps target some of the issues that are barriers for all organizations that do not fully integrate and employ the needs and issues of our autistic community.
In addition to the intensive labour and time required to set up empancipatory research projects and the change the structure of autism organizations — both which seek to amelieorate the social oppression of autistic people — their is little capital out there for this. The larger autism charities focus more on causation research and are better capitalized as opposed to volunteer autism organizations more often led by autistic people (Arnold). So, if you are a researcher endeavouring to do this kind of research in autism, The Autism Acceptance Project would like to hear from you.
“Disability research should not be seen as a set of technical objective procedures carried out by ‘experts’ but part of the struggle by disabled people to challenge the oppression they currently experience in their lives.” (Oliver, 1992).
Vernon, Aeysha (1997) Reflexivity: The dilemmas of reseraching from the inside, in Colin Barnes & Geof Mercer (eds.) Doing Disability Research (Leeds, UK; The Disability Press) 00. 158-176.
Preistly, Mark (1997) Who’s research? A personal audit, in Colin Barnes & Geof Mercer (eds.) IBID., pp. 88-107.
We are The Adam Family. As we grow into our lives with autism, it becomes increasingly difficult to see the “normal” world as the actual opposite of what it purports to be by that label. The more on the margins of society we seem sit, the more absurd “the rules” seem to be. In thinking more about Inclusion and The Canadian Charter of Rights and Freedoms, I realized that the idea of Adam having his own family, therefore, is not a sight-out-of-reach. It is a possibility, his choice, and right which must be enabled and protected. How, on earth, if you are a new parent to an autistic child, particularly one like mine who has limited verbal ability, could this be possible? Well, it may seem a bit quirky, and some would be up-in-arms against us citing us as a future social welfare burden, but first let share this take on The Addam’s Family series:
Much of the humor derives from their culture clash with the rest of the world. They invariably treat normal visitors with great warmth and courtesy, even though their guests often have evil intentions. They are puzzled by the horrified reactions to their (to them) good-natured and normal behavior since they are under the impression that their tastes are shared by most of society. Accordingly they view “conventional” tastes with generally tolerant suspicion. For example, Fester once cites a neighboring family’s meticulously maintained petunia patches as evidence that they are “nothing but riff-raff.” A recurring theme in the epilogue of many episodes was the Addamses getting an update on the most recent visitor to their home, either via something in the newspaper or a phone call. Invariably, as a result of their visit to the Addamses, the visitor would be institutionalized, change professions, move out of the country, or have some other negative life-changing event. The Addamses would always misinterpret the update and see it as good news for that most recent visitor.
I wish we could all live with the same conviction. When parents get frightened about autism, it’s usually because of fear for the future – will my child get married, go to school, have friends? The pressure to conform the unconformable is immense. For many years I quietly shared the same worries, although I feel my worries were more rooted in society’s acceptance of Adam. My viewpoint is shared with the more widespread social model of disability — that our modern definition of disabled is a term to describe the social barriers that make a life living with an impairment exclusive/segregated. There are naturally going to be times in the beginning of having an autism diagnosis, most-likely if we’ve never experienced disability before, that we will be thinking in terms of our own lives, how we grew up, went to school, made friends, had our first boy/girlfriends and later, maybe even got married and had families of our own. When we don’t see our children doing the same things in typical ways, we worry for them and maybe even for ourselves. The life trajectory is one that our society uses to plan every stage of our lives from how we go to school, to what we are supposed to become, to building our retirement nest-egg.
We expect to be on a path that is economically driven. We are raised to comply, to be a part of society. About a century ago, the formation of “school” was intended to prepare children for later entrance to the military. Today, we plan for our babies at the get-go with pre-school and envision them at Harvard – the ultimate preparation for a new kind of regime. We prepare our little ones for the economic march into consumerist culture. Our frame of reference for understanding is capitalist. Erich Fromm believed that we tend to categorize individuals “according to various types of status, to glorify superiors, and to look down on those who are regarded as of lower rank (e.g. persons belonging to other ‘races’) – must be understood in light of an authoritarian upbringing, which in turn is associated with other general authoritarian tendencies in the workplace and society in general.” (Alvesson and Sköldberg). That “authority” well, to coin James Carville, is “the economy, stupid.” (I’m using Carville’s words and am not implying anyone is stupid. I want to acknowledge the sensitivity I actually have when people use words that can be used violently). While resources are an issue for supporting autistic individuals, others site Libreralism as a issue as it put great stake in “liberty, automony and choice… Given the reality that some persons with disabilities will necessarily be in situations of intense dependency and reliance, can liberty and autonomy — with their emphasis on freedom from — really be the lodestars liberalism has assumed?” (Devlin and Pothier).
When we bring an autistic child into the world, we don’t fit the model pretty much from day one and especially after our children receive their first official diagnosis. We try to squeeze into charitable models for definitions of our existence, but they feel uncomfortable, placing us in (again) subordinate positions yielding to the “power” of the do-gooder/philanthropist and the “experts” in receipt of their research funds – an unequal relationship. Our families collide with ideologies that we are forced to question. Not “fitting in” is another way of describing how we are placed on the margins of society, or discriminated against. Relatively recent disability laws are made to protect us from exclusion, giving our children full citizenship rights.
Still, we struggle find such justice for them within their daily lives. We first look to school systems and are met with the red-tape of the process of getting IEP’s and special accommodations and quickly realize it’s a legal issue and process. I often wonder which “side” that law protects. We parents (I am writing as a mother so I have to assume that if you are disabled/autistic reading this, you will understand that I recognize this also as your issue) don’t count on having to fill in reams of paper applications, spending hours in meetings, navigating government support systems and administration when we are swaddling our new bundles-of-joy. The navigation to be special – not that it’s our choice – indicates from the start that we’re not supposed to be this way. Our children aren’t supposed to be autistic and public schools protect themselves from us with the red-tape, and we have to fight for our children to be included, not marginally integrated or tokenized. Most of us don’t “fight,” we become diplomatic contortionists and try to get our kids “in” to the extent we can. While it’s a worthy fight, it’s still one that we’d rather not spend our time on. We look forward to the day when autism – about twenty to thirty years behind our recongition of other disabilities, including intellectual disabilities – is widely accepted and welcomed in society. With that welcoming is also a recognition of the intersections between race, culture, gender among other interlocking connections, that make up experience.
As I let Adam go into the world, with the support he needs in order to be an equal citizen, I am always working on my visions for him as a parent. The other day, I thought long and hard about a photo I collected from Toronto’s Abilities Arts Festival a few years ago. It is a photo where two intellectually disabled parents sit on the couch with their three typical children — a “normal” family photo called “Lucky Strike.” The subjects also wrote a paragraph about how they got married and had a family with the help of their support workers. It dawned on me about Adam and his family: there is no reason why Adam may not have a family of his own, by accident or by choice as is the cycle of life for many a typical person. There is no reason why he cannot attend higher-education as an adult. There is no reason why he cannot participate in whatever he wants. It is, after all, the law, granted, subject to enforcement as well as interpretation and dominant social attitudes that are still weighted against the disabled person. We also know that not all our rights are enacted and there is a hesitancy by many families and individuals to go through the legal process. Not all universities understand the need and function of the aide worker. Although York University accommodates people with disabilities, it found itself in a legal dispute with Ashif Jaffer, a student with Down syndrome, because he claimed the university did not accommodate his needs. For these reasons, we have to keep on working hard, and likely take a few risks, for the rights of our beloved family members to be included with the accommodations that they require. This means also the help of aide workers and various technologies, among many other individualized needs.
People can have families and also be supported by others. Our children, even our non-verbal ones, can have a say in their plans and lives with guided decision-making practices. Non-verbal people may be able to type or write visual essays and participate in research about autism, and all autistic people have a right to both participate in research and have results disseminated to them in ways they can use and understand. Check out websites on emancipatory research and visual essay formats. No it’s not easy to do, but we’re starting to do it and we are inevitably going to learn by doing.
An “emancipatory” life requires support and that support requires a vision of possibility, enablement, democracy and a plan. As a paraplegic requires a wheelchair, many an autistic person requires people in their lives to support them getting to and from destinations, to having families, to making decisions, to managing the many details of life. Some of this right now is a privilege for the families that can afford them. It is, however, everyone’s right and I for one want to hear more stories about how families and autistic people are helping to let autistic people live their lives as autistic people. For the families who are able to provide the supports we seek from society and governments, we need to hear your stories in order to provide more buidling blocks of enablement.
What is independence? I can’t work on the technology of my computer on my own. I need tons of help with it. I need extra hands to help me around the house and in managing a schedule as a single mother. I need teachers, handy-men and someone to help me when I’m ill. I build my human network as a result of necessity. Others also need me and I am able to lend my hand or my special skill set. For reasons revolving around Adam, I am sensitive to our capitalist notions of independence and how that seems to relate to the family and school. Are we creating communities of people who are interdependent on each other, or human silos? How “happy” does that latter future look like sitting there all alone in them?
Here’s a future that I can see unraveling before my eyes, despite the struggles, tensions and issues we presently encounter and grapple with: I see more people employed in these areas to assist and guide, but further than this, to balance the power that can be offset by the “abled versus the disabled.” Ergo the terms “assistants and aide-workers,” not therapists. I see more effort towards emancipatory lives for the autistic, of all “functioning” levels. I see our growing ability to understand and respect one another, to honour the visual way and other modes of learning and communicating, presenting and even reading the materials by individuals with autism. It is a reciprocal human economy with autistic people in it.
For the first time since I’ve had Adam, I imagine that it might be possible, as Adam is my only-child, that I could one day be a grandmother after-all. It was actually one thing that made me a little sad when Adam was diagnosed — the world seemed to be locking its doors to us so soon. Of course, all of this is Adam’s choice, hopefully. It’s the choice that matters. The principles upon which I now imagine and locate our lives, in practice as well as principle, is one of possibility and of how our lives can be enriched, even made better, by including autistic people in them.
Adam’s life should be one of his own making, and I am here to support him down his many paths. The questions I now ask more often, are not only about how much work does Adam must do (as the onus has, to-date, largely be on the autistic person to become more normal before s/he can participate in society), but how can I help him obtain for himself not just a “quality of life,” but a vibrancy, of life — the excitement of possibility and choice — that many of us took for granted while we were growing up? This also belongs to him.
This can be our future — for our children and even for us as parents of autistic children. This isour Adam Family.
It is the first day of school for just about everyone. Most discussions about autism has to do with learning and inclusion — keeping our children integrated, or keeping them home-schooled when appropriate, or even better for their needs, developing social skills, academics, life and communication skills. No matter what methodology — or school — we may consider, this question lingers–what we are trying to accomplish and how is equality reflected (or not) in our school systems?
I still struggle to fit it all in — a list of goals for Adam measured against the hours of the day and his own abilities, pace and interests. “Following Adam’s lead” seems like an easier solution, and the ideas of “pushing” him, or any child for that matter to reach their “potential” and “following his interests,” are ideas in constant tension in the autism community. Add to that the idea of “normalizing”or becoming a “productive member of society” against our ideas of what productivity means for a variety of different people, and we come up with more important questions about how we should help autistic people. Some might contend that our current notion of productivity has more to do with amassing material goods than about contributing to society.
Autistic education is located within our ideas, and conflicts about the idea of what we feel a school should be in this economics-as-material-consumption sense. Zander Sherman explores this and looks at the development of schools in Prussia which prepared students to become part of a strong army. He looks at testing, private schools, the military.
His new book is called The Curiosity of School: Education and the Dark Side of Enlightenment. The Globe and Mail reviewer, Ben Levin says that Sherman’s thesis seems to be a quote from Einstein that he uses at the beginning of his book, “It is a miracle that curiosity survives formal education.” Sherman was home-schooled himself until the age of 13 and thinks “that mass education is excessively focussed on the wrong things — compliance, a narrow curriculum, preparation to fit into a society and economy — and thereby does not give sufficient attention to real education, the pursuit of curiosity and personal challenge.” (Saturday’s Globe, page R15). It would be interested to review the book against others like Elusive Justice by Abu El-Haj and others that deal with education, equality and social justice. I have to ask, how do we nurture and promote Adam’s own curiosity? Do we recognize and value it if it appears different to us? Isn’t this value we attribute part of his right to be equal and different?
Adam is back at school as am I. We have always used the modes of learning that we have at our disposal, that seem to suit him best, but we have to admit our limitations in understanding our children. We try, they try, and as his mom in thinking about his whole life and the “quality” of it, and even how we define that, I feel it’s my duty to him to ask myself the harder questions.
School is fast approaching and some autistic children get access to inclusive schools and others do not. One of the barriers to inclusion is access to technology and other supports that can enable and autistic person to participate and become successful. Many camps and schools have boycotted the use of iPads for fear it detracts from a student’s attention. Some schools prefer “traditional” methods, and argue that technology takes away from that experience.
In the case for inclusion and access, these are some of the antiquated attitudinal barriers we must work to deconstruct. Many non verbal autistic individuals, and other autistic individuals who learn better with computers for visual reasons as well as reasons to do with less distractive stimuli that can impede learning, need technology (and other accommodations) not just for school, but for vital communication and everyday functioning.
In an effort to break down barriers to access, “The Council of Canadians with Disabilities (CCD), a national organization working for an accessible and inclusive Canada, recently consulted people with disabilities about ICT use and recommendations on barrier removal and prevention.” Although there is a duty to accommodate, most schools and camps will not do so, especially for the autistic person. Here’s some more examples:
Although accessible ICT is available in the marketplace, it can take an incredible amount of self-advocacy and persistence for an individual to obtain it. Doreen Demas, who has vision impairment, discovered this when seeking an accessible cellphone from the Manitoba Telephone System (MTS). For customers without a disability, acquiring a cellphone that meets their needs is a relatively straightforward consumer activity. MTS’s original offer to Doreen was an inaccessible BlackBerry. Over a period of several years, it took numerous frustrating sessions with MTS representatives and a complaint to the Canadian Radio-television and Telecommunications Commission (CRTC) for her to obtain a contract, with reasonable terms and conditions, for an accessible iPhone. The CRTC has a policy requiring that Canadian cellphone service providers include an accessible product in their catalogue of devices on offer to the public.
Some post-secondary students with disabilities encounter barriers related to ICT. While a student intern, who requires large print, may be most comfortable using a particular program to enlarge text, the intern’s field placement agency may think it is reasonable to expect that person to use whatever programs are available on the in-house system. Although educational institutions and employers have a duty to accommodate disability-related needs, individuals continue to struggle to have such accommodations provided.
The other barrier is poverty. Most of our disabled population, due to so many barriers to employment and educational institutions, end up living beneath the poverty line. This also make access to essential communication and technologies expensive:
Like everything in the marketplace, ICT comes with a price tag. People with disabilities experience a disproportionate level of poverty. People with disabilities of working age are about twice as likely to live on a low income as their counterparts without disabilities. “There is the assumption that everybody can afford a computer. That’s an assumption. It is not a fact,” says Marie White, Chairperson of CCD’s Social Policy Committee. “Our most challenging issue is poverty.” Some people with disabilities face additional costs because they have to buy ICT, and they also must purchase adaptive technology to make inaccessible technology usable. In some provinces, provincial programs provide people with disabilities access to technology.
For Adam’s sake and like many other parent advocates, I’ve had to learn a lot about AAC (Assistive Augmentative Communication) and how to use it by myself through courses and “old-fashioned” book-learnng. In turn, I train many of Adam’s teachers and support workers in his use of the iPad and with typing. Finding SLP’s trained well in the field is difficult but necessary, and there are a precious few who do it exceptionally well. While SLP’s are typically trained in “speech” functioning, there is tremendous value in their teaching to the ways and means of autistic communication, literacy and the use of devices for advancing skills. The device is often referred to as the individual’s own “voice” or “talk box,” and should be treated with the same care and respect.
It’s tough to still get people on board at the school level, to see devices as a necessity for many autistic people, and to include them with the same value and respect as we would the voice of any other child.
I hope you have some success in using this information when you approach the school boards and other support workers.
Integrated Access: The Right to Universally Designed Information and Communication Technology Evolution of Access—Building in Access to Information and Communication Technology, Abilities Magazine.
“Our job isn’t to figure out if a student should be participapting. Our job is to figure out how a student should be participating.”
This is a line from Paula Kluth’s DVD, author of You’re Going to Love This Kidon inclusion in the schools.
We are on the brink of another school year. Many parents struggle with finding not only a placement for their autistic child, but the right placement. In Canada, as is for many places in the world where children are more likely than ever to be included, children and parents with autism are still some of the most excluded in our society. I often find it shocking the lack of support in my country where we seem to have otherwise great social supports. Despite there being many great and willing teachers, the school system is still one of the most unjust insitutions for autistic students.
While many of us work to change attitudes and policy in Canada and the US, I want to reiterate what an important step integration and inclusion is for all of us. Watching Adam at camp and even younger people with disabilities, the younger generation already has much more exposure to kids with disabilities than my generation ever did. Many a parent I’ve met will register their child into an integrated school in order for their children to respect and value everyone. After kindergarten, however, the segregation typically begins. While we may have seen more effort towards inclusion, we are still teetering between the two extremes.
Watching Adam with other children and their patience and acceptance shouldn’t just happen once in a while or at summer camp. Adam has developed so much this summer, as he does every year, and his peers do too. They are much more tolerant and accepting than I can remember of my generation. It is an indication of how important it is to start inclusion young and from the get go. I believe it is the older generations like mine who simply let old habits get in the way. Watching how easy it is for children to accept human difference is proof to me that inclusion is good for everyone.
This post is dedicated a couple of submissions I received this summer for review: Paula Kluth’s website, DVD and book I’ve mentioned before, You’re Going to Love This Kid; Eileen Riley Hall’s Parenting Girls on the Autism Spectrum.
The key for teachers is to learn how to include. This involved adaptations in the presentation of lessons, to how a child can respond to lessons. Adam, for example, responds to multiple modalities, but the main way of teaching him and transferring his learning is through the visual — computers, iPads, manipulatives and actual experience in the field. Accommodations also include sensory breaks, exercise, and other adaptations to a classroom. For instance, Adam can focus better on a ball chair. Otherwise, he needs to move his entire body so this provides the feedback he needs right now in order to attend to his lessons.
While the pressure to “be normal” in its elusive forms and definitions was more difficult when Adam was younger, we have grown into another comfort level with our lives and ourselves. Adaptation is simply a wonderful way to make learning accessible to Adam and it’s a joy to watch him grow and learn. Paula has many tips on adapting lessons and changing attitudes so that teachers and schools can adopt full inclusion. She makes it sensible and inspiring. I suggest you check out Paula’s YouTube channel for more information.
Eileen Riley-Hall is the mother of two autistic teenage girls and the author of Parenting Girls on the Autistic Spectrum: Overcoming Challenges and Celebrating Gifts (Jessica Kingsley Publishers). As the mother of a boy, I was wondering what I’d learn from Eileen, but knowing so many parents with young autistic girls, I had to recommend her book. Sometimes we just want to refer to another book by another parent for that down-to-earth advice. I would also recommend along with a how-to book such as this, all the books by autistic women including Donna Williams, Lucy Blackman, Dawn Prince, Temple Grandin, Jasmin O’Neill (among others) — some of the first autistic women to write from their own unique perspectives. I like to pair my parent-memoirs with those also written by other autistic people.
What I found most refreshing in Riley-Hall’s book was Chapter 8 on “The World Wide Web.” Most books written by moms of autistic children usually contain lists of therapies and websites that can seem overly-diplomatic, noting down every therapy out there for the parent to sift through without any critical analysis of the therapy, the way it came to be in the vast array of (and history) autism “treatments,” and the controversies and potential dangers surrounding them. In contrast, Riley-Hall offers some warnings and states the pros and cons of the many websites that parents must navigate when entering the autism community. “There are very distinct divisions within the autism community. So you have to know that whatever you read is fueled by an underlying position or philosophy about autism: what it is, what causes it, and how best to treat it..unfortunately there is very little middle ground in between.” (p.131). When I first started reading books about autism by parents ten years ago, I wish someone had provided me with that caveat.
In reviewing her list, it is apparent that Riley-Hall is recommending sites that support and accommodate the autistic as “complete,” an encourages society to value the autistic person. This book is part “how to” book and part memoir that makes Riley-Hall’s book accessible for the parent of an autistic girl. Best of all, it’s all about acceptance.
Best of luck everyone in prepping for another school year!
Like many of you, I watched the closing of the Olympic ceremonies. Today’s notes from the ghetto weave some thoughts about the Olympics, a book, a documentary, and the Canadian Charter of Rights and Freedoms.
In a waiting room this past week, Sports Illustrated lay limp and wrinkled on the table in front of me. An title about how the games were more inclusive this year caught my eye and I read it with disappointment. There was no mention of people with mental disabilities. I didn’t take the copy of the article because it wasn’t mine, and now I can’t find it to cite. You’ll just have to take my word for it unless you can find it for me.
I wanted to write a post remarking again how people with cognitive disabilities weren’t visible or participating in the games. As much as I watch the Olympics, I can’t help but see it as a symbol of our admiration of the able-bodied. Including some disabled people in the opening ceremonies and a Para-Olympian is supposed to change that view. The “main” Olympics gets the bulk of the media attention. In talking about the Olympics, then, the media coverage is a reflection of what the consumer wants to see. I’m not blaming the athletes for being able-bodied and I congratulate everyone for their remarkable achievements. I am, however, spotlighting the acceptance of exclusion.
Today I also finished Melanie Panitch’s Disability, Mothers and Organization : Accidental Activists and read about the three mothers who worked tediously to get their children out of insitutions in Canada and close them all down: Jo Dicky, Audrey Cole and Paulette Berthiaume. I read how these women lived in a time of not only gender inequality — “busy men” on boards versus women knocking door-to-door as volunteers — but also in a trail of institutions born from the eugenics movement. The first institution in Canada was the Huronia Regional Centre in Orillia, pictured above, which opened in 1876.
Ironically, as I finished reading the final chapter this morning, I tuned into the CBC documentary The Gristle in The Stew and listened to the stories of horrific abuse of the people who were labeled mentally “retarded” by professionals. These professionals told parents to just “forget about [their] children and move on.” The government film “One On Every Street” told parents that 1 in 33 children had mental retardation and described insitutions as happy places where children would be educated and rehabilitated in the name of getting them back into their communities. Not so for Paulette’s son and others like him. Her son Louis lived in an institution for thirty years before she could get him out.
Audrey, Paulette and Jo were made to feel guilty for not only having disabled children, but were also pressured to put their children into institutions and be “good mothers” for doing so. Many families lived in fear of not placing their children in institutions because they did not have access to other services so they turned a blind eye to the abuse. There was no “unity” in their struggle, for these fearful parents criticized activists against the campaign to close institutions in Canada.
While these three mothers fought (and won) to get all people out of insitutions in the name of their children, they were excluded and marginalized as “emotional” and “trouble-makers” along the way, often excluded from participating on major boards and committees. But they did not desist. These three women managed to close all institutions down in Canada, and worked arduously for over twenty years to do so. They worked in 1981 to include the disabled who were then omitted from Section 15, which dealt with equality, and secured human rights for the disabled in The Canadian Charter of Rights and Freedoms. They won an unprecedented $1,400,000 in personal dmages for 88 former residents of Saint-Theophile in Quebec in 1990 (pardon the omission of accents that I can’t access on this blog), among many of their accomplishments. They did so as volunteers. One reviewer, Susan DeLaurier says of the book, “Disability is often viewed as a narrow field of social policy, programs and services that leads to a set of parallel social arrangements that have isolated disabled people in segregated systems. By looking at the mothers of children with disabilities and their insights and researching their activism, it is hoped that disability will be viewed as a broad-based inquiry commanding social and political analysis.”
A class action law suit of $3 billion for the plaintiffs incarcerated and abused in Institutions in Canada, simply for having a mental disability, will happen in September 2013. Listening to Patricia Seth and Maria Slark, two of the plaintiffs in the documentary, made me shudder. As a mother, I already know of gender discrimination — domestic and public as a mother of an autistic child and an activist — and there are challenges with this in helping Adam. To imagine how the “accidental activists” had to wait for so long to see their children free again, reminds me why I feel anxious so often. I feel I am always looking over my shoulder and can never rest where Adam is concerned. We have to respond when advocates for any “treatment” or “therapy” which uses the same language and logic that incarcerated innocent people just a short time ago. In the ABA movement which started in Canada in the early 1990′s many of the campaign phrases and threads of logic echo like the halls of institutions. The ABA movement was founded on the premise that autistic children would recover by age six with the treatment (and now the argument extends to older ages) and would therefore no longer require “state” funding. At the time, the estimated costs of funding an individual in an institution was $85,000 a year. In 2012, I relate to the same feelings as these mothers and share their experiences even after feminism has evolved. The challenges and the way to help Adam become increasingly complex, there is resistence and fear of progress, old arguments persist and the “busy men” still exist.
Our situation remains fragile. Despite statutes, we have not achieved Inclusion for people with autism. Society does not see autistic or other mentally handicapped persons as truly valuable to our communities where definitions of “capacity” and “productivity” seem exclusive and informed by implacable economic theory. We see it at the most basic level as in extraordinary red tape in our education system and, after all, I’m “just a mother.” Despite detailed notes and expertise about our children, the public system will hardly pay attention to it. They prefer a report from a professional using standardized tests which is an exclusive and unjust method of testing an autistic person. I talked about some of this in another post about the many ways we experience exclusion. “The briefing notes by the Community Association for Community Living in 1993 noted the same: “despite the protection afforded to people with disabilities in the Charter of Rights and Freedoms, many barriers to participation still exist in employment, immigration, education and the criminal justice system.” (Panitch, p. 145).
There is another group who tell us to “never forget,” and this same standard must be advocated for the disabled who have experienced formidable abuse in their lifetimes. When Pierre Berton reported about the abuses at the Huronia Regional Centre in Orillia (pictured above) in The Toronto Star, Berton noted that after Hitler fell, “many Germans excused themselves because they said they did not know what went on behind those walls. No one had told them. Well, you have been told about Orillia.” Now I, along with others, am telling you about echoes; of the history that could repeat itself.
The Olympics is just one more timely, everyday example of using people as footnotes and keeping them in the ghetto. It is time to include all the Olympic events — special, para and everything else, under one umbrella. I work for the day when I can witness Adam attaining his full citizenship rights. Audrey Cole wrote a Manifesto with her two lawyers called A Manifesto of the Canadian Association for the Mentally Retarded in 1982:
“The Manifesto equated how the renewed constitution established the full autonomy of Canada within the community of nations with how the provisions of the Charter of Rights and Freedoms introduced a new history for people with disabilities as valued, participating members of the community. It concluded cautiously: ‘The Charter of Rights and Freedoms obviously has very important implications for Canadians who live with a mental handicap. It is not possible to determine fully what those implications might be until the provisions of the Charter are considered by the courts in the contest [sic] of real life situations.” (Panitch, p. 133).
Audrey Cole said in her interviews with author Melanie Panitch:
“Our struggle is long-standing. It will not only continue but will gain strength with every denial of a fundamental right to any person of any age with or without disabilities in this country…Outrage, as you know, can be a unifying force for the achievement of social justice.” (ibid, p. 69).
We’re living the relay race and our work is not yet done.
Melanie Panitch, Disability, Mothers and Organization: Accidental Activists. New York, Routledge, 2008.
I have a comment on comments, either in comment boxes or full blog posts about other writers and bloggers. Usually I won’t write about it, but I decided to write in my own defence. In so doing, I’ve had other thoughts about the various ways of being excluded, as either autistic people, or as autistic allies.
Recently, I did a self-search on Google. I am sad to say that I get used to disrespetful commenters who seem to create a narrative about me that is unfamiliar to me. I am also delighted, however, by comments that build upon a constructive dialogue about autism and disabiltiy and how we can remove the barriers for autistic individuals. I happen-stanced upon a post from 2008 about my blog — that mostly I “get it right,” but advocate for doing “nothing” for the autistic person.
If you’ve been reading my blog since 2005 I’ve done nothing but critically evaluate everything that Adam and I have come across in terms of therapy, education, autistic/social value, and opportunities, and the lack thereof. While the nature of blogs has changed since 2005, many of which have become syndicated journalism, I’ve kept mine in journal-mode, writing about my own growth and development as an autism parent to my beloved Adam.
Adam has been in “therapy” since he’s been 20 months of age and I have reams of notes and binders I have taken to create his programs, track his progress, develop his plans. I have created his programs along with other professionals that use ABA, RDI, Floortime and other methods. I have a decade of experience of autism education and various therapies, many of them dubious. I’ve witnessed improvements in the field where I continue to have a watchful eye. I predicted that we would be forced into an ABA program, and here we are, in an segregated school for autistic children. Not that it’s a “bad” thing. I am actually grateful not to be in a system that completely disregards him, but is set up more for him. Adam, for now, is happy there and he is learning, but it’s a fact that it’s still exclusion which we mitigate with other inclusive programs.
ABA is something that we’ve had to contribute to improve upon because it’s really hard to change the system. To me it is in part a method and in part a label for a type of education that in some schools, uses other methods in addition to it. Adam and I have to “fit” into a mold and make it the best for him — those are our barriers and limitations for now. We work to fill in the gaps ourselves. I learned and taught Adam how to type…by myself — by reading, studying and consulting others who have other expertise to add. Now his school builds upon what I started. Recently, I was asked to write a book about it, and may do so after this year of finishing my M.A. in Critical Disability Studies. I have now five years of typed dialogues between Adam and myself, methods and back story of how it all began. He would never had had this opportunity had I not taken his education and communication upon myself, and I’m not shy to admit it because I hope it will become more mainstream. I am not alone in this among many autism parents. We make our own roads and other parents will share the work they’ve done.
We still work towards Inclusion, but when I made a recent query within the public system, as predicted, it ended up that Adam would be put in the “lowest functioning class” (their term, not mine). His cognition and “capacity” was determined by his limited verbal ability and results on standardized tests (which we know do not befit the autistic person as much as a dyslexic person cannot read typical text). How many students in these classes, no matter what their label, are not getting the education they deserve? Whose to decide on someone’s functioning level and “capacity” when we give unsuitable tests? Who has the right to decide who is normal and abnormal and how do semantics and labels effect people’s lives? Finally, if we decide to write off a “class” of people from the get-go, where do we end up? We are all effected, autistic or not. How we treat our collective members of society is a reflection of how we think about ourselves.
It seems there is a group of people who don’t understand (or want to set others astray) on the meaning of neurodiversity, which basically acknowledges that different people have different neurologies that make them learn and interact in the world in various ways. Myths are spun because it is assumed that if we “embrace” autistic people (some of us have been labeled “Neurodiversity Advocates” in a negative context) it will not serve their politics. I suppose, in the system we currently have which are so exclusive and politically limiting to us, we can understand the method, but I think it’s ultimately detrimental. An exclusive, “tragic” and medical approach to disability limits community membership and opportunity. Until recently, as autism parents, we have had to feed into the “autism tragedy” model in the belief that this is the only way to garner financial support and services. Despite inroads against the medical and disability-is-tragic models, there are many new parenting studies which seem intent on proving that autism causes families to break apart, which to-date, cannot be proven. This is another way of excluding autistic people and their families — by seeking something to blame, researching etiology and causation instead of spending money on understanding autistic individuals and bettering their quality of life.
If we accept and believe in our children and don’t get tragically depressed, we are written off (as I have been on numerous ocassions) as being in denial. I have been labled a neglectful parent, and a “mental case,” (a revelation of the prejudiced inclination of the autism “advocate” who stated that about me).”Those who stray from the this prescribed script [the tragic or depression 5-staged model from grief to acceptance] — for example, by not being as depressed as predicted — run the risk of being regarded as in a state of denial and in need of further psychological guidance and counselling (Oliver, 1995; Reeve, 2000; S. Wilson, 2003).” I think life is all about struggle and we have to work with it. Nevertheless, when we write publically, we leave ourselves open to criticism of all kinds. I embrace that too, but I will also take it on.
It has been challenging to write this blog for the past few years. I’m not allowed, according to some autism parents, to take joy in my son for who he is as an autistic person. My own ups and downs are disregarded if I do not publically lament in the same fashion as everyone else. I opted not to do this because I always kept my son and his community in mind. If I were an autistic person, I thought, how might I wish to be regarded? I don’t criticize others for their depression because each one of us has to take our own unique journey. I simply believe that I, personally, have to exercise a discipline in my thoughts and feelings, which is not to say I don’t have the same kind as everyone else. I have imposed this upon myself. I have always kept Adam in mind when writing publically because I believe one day he may read this. I also wish to embrace and listen to the autistic community (that is, autistic people). It’s unfortunate when others feel they have to “spin” for political reasons or their own benefit.
The other political debates and controversies lie in semantics and definitions. Words are important as they reflect our thoughts about the way in which we see ourselves. We work against traditional systems that have to-date, been oppressive and exclusive agianst the disabled. Paul Hunt first challenged what we call today ‘abelism’ (a society that favours the able-bodied), in his 1966 book, Stigma: The Experience Of Disability. He said, “We are challenging society to take account of us, to listen to what we have to say, to acknowledge us as an integral part of society itself. We do not want ourselves, or anyone else, treated as second-class citizens, and put away out of sight and mind.” (p. 158).
The Union of the Physically Impaired Against Segregation (UPIAS) was formed in 1974. They re-defined the distinction between “impairment’ and “disability” as part of their mandate to “criticize organizations control-led by non-disabled ‘experts’ for their failure to address the social barriers central to disabled people’s exclusion from mainstream economic and social activity and their lack of accountability to the disabled community.” (p.29)
- impairment: lacking part of all of a limb, or having a defective limb, organisim or mechanism of the body;
- disability: the disadvantage or restriction of activity caused by a contemporary social organization which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities. (UPIAS 1976z, p. 14).
This social model approach breaks the traditional causal link between impairment and disability. The ‘reality’ of impairment is not denied, but it is not necessarily a sufficient condition of disability.(p. 30).
Writing about autism as a joy, my absolute love of my son for who he is, my personal struggles without pandering to the pressure to lament in typical ways while embracing other’s need to make their own unique autism journey, is about inclusion of everyone. It begins with the fundamental acceptance and belief, however, that all autistic individuals are worthy and valuable members of our collective. It’s a necessary premise.
The social model is not about showing that every dysfunction in our bodies can be compensated for by a gadget, or good design, so that everybody can work an 8-hour day and play badminton in the evenings. It’s a way of demonstrating that everyone — even someone who has no movement, no sensory function and who is going to die tomorrow — has the right to a certain standard of living and be treated with respect. (Vasey, 1992a, p.44)
Barnes, Colin, Mercer, Geof and Shakespeare, Tom. “Analysing Disability” in Exploring Disability: A Sociological Introduction, pp. 1-42. 1999 Polity Press.
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.
because finding joy doesn't come without struggle;
because the point is to find it;
because if an autistic person calls autism their way of being, not an illness, then it is;
because every human has value and is a joy;
because despite inhumane acts, I believe in humanity;
but most of all, because of my son Adam.