This is a short post to wish all of you a happy holiday and New Year. Adam and I have had such a wonderful year – his wish now to write a book and all that progress with his typing. Finally out of the clutches of autism schools that haven’t realized Adam’s abilities, Adam is now doing his grade seven curriculum. Thanks to everyone who has supported us this year! It has been a joy for all of Adam’s family and closest support staff to witness Adam’s happiness and self-esteem that is noticeably changed since he talks more with friends and family by typing.
That said, despite proof, I am dismayed with “autism programs” here in Canada and the lack of activism we engage in as families. Compliance and normality still propel autism programs here, and rape a family’s emotional and financial well-being with the empty promise of recovery, cure and a semblance of “normality.” I ache for families and more so for autistic children – many forced behind closed doors for hours a day in “therapy.” This is no quality of life, no joy. This is child-abuse and unless we begin to identify the violence of these programs, little will change. When I think of a New Year, I spend most of my time thinking about the work that needs to get done. I think about what my obligation is as Adam’s parent and it’s not about therapy.
It is our obligation as parents to understand the autistic community that is comprised of other autistic people. We are much more obliged to read and try to understand the experiences of autistic people for the positive development and growth of our children. The autism agenda (that is research and policy) is set by non-autistic people who are telling parents that is their obligation to do everything and anything to cure their autistic child – this spans from starving them from certain foods so they appear less autistic to forcing normalizing therapies. Even if in a situation (because true inclusion and acceptance is far from achieved in our country) where there seems to be little choice at but to put a child in an autism school (typically with ABA therapy), a parent must do everything to find a learning and social situation that supports difference (and I realize that using that term risks totalizing) without the propensity and impulse to normalize. Sure, these are loaded sentences that I’ve spent since 2004 working through (you can read them in the blog), but they need to be because the situation is not as black and white as most media outlets (I need to write that letter to the CBC!) and research outfits will have you believe.
As a parent, I also have to pick my battles because there are so many to be had every single day. It is the reason why we can’t write about every injustice everyday here on this blog (although I think about it). Instead, I am working with Adam and his team on delightful things – his words, his thoughts, and yes, his pain that he cites within a society that doesn’t accept him. Even though that incites me, Adam is so full of love and acceptance for that very world in which he wants to belong. I’d like to think that maybe I’ve had a bit to do with that. Exposing Adam to autism conferences where most autistic people go (as opposed to the ones where researchers and parents go), has changed Adam in profound ways. I consider these to be in part, my parental obligation to him.
But speaking of battles, at the moment, I’m challenging a ski program here in Ontario that seems to be practicing a qualified inclusion. Qualified inclusion means that an autistic person needs to be independent before the right to participate. I’m trying to explain to these folks the meaning of what I call for now, “enabled participation.” This suggests that many folks require their own chosen support staff (chosen and employed by the autistic person) in order to participate in ways also chosen by them. This process takes time. Consent and choice is a multi-faceted process – not necessarily a yes or no answer. When someone is challenged with verbal communication, they require many opportunities to respond to how they want to live their lives. They require people who believe in them and who know how to support their movements and communication.
When I mentioned to this ski program that excluding autistic people from autism programs is discrimination because it is qualified on the concept of normality, I received an email that Adam would be accepted on the ski hill. Since then, however, I’ve received an email that Adam will “be assessed.” At the moment, those criteria for assessment remain invisible to me; they have not disclosed their terms and I may only assume that independence is top of their list, even though they have accepted him with his assistant on the hill. Such assessments need to be fully transparent. When they are, we have the right to critique them (because we know that all assessments are based on discrimination and bias – that only verbal, normalized ways of participation and response are acceptable). I am not only a parent, but a scholar in this field being talked down to and to some extent, manipulated. One would think that many-a-program, to avoid human rights complaints in the future, would tap my knowledge of policy and law and how to better “the autism program.” Autistic folks and some folks working in Critical Disability Studies are able to provide this input for policy-making and this needs to be harnessed. But…
This is the struggle that we all face as parents and we have to understand that the rules are set by non-autistic people that want to make systems that befit them, not the autistic person. Remediation, cure, recovery, normality, independence – these are NOT criteria for inclusion. This is not substantive equality in the legal sense. Substantive equality enables the disabled person in their disability to participate as they are. So, I’ve targeted a battle, a struggle. It is a frustrating process to trouble such organizational policies, but this is are real job as parents. Don’t buy into the rubbish that autistic people are trouble and the “problem” of autism must be eradicated. That’s a backwards way to look at the issue. Instead, as parents who have long-supported damaging policies and educational/therapeutic models that autistic people have long been critiquing (as they have been hurt by them), it is time we turn our minds and our hearts to supporting our children, no matter what age, to change the rules that have long excluded them.
To that, I want to end by reiterating Adam’s Christmas wish that he typed on Christmas eve: “I wish for love and open hearts.”
One must also believe that open hearts may open doors too. Wishing EVERYONE some joy admist these continued struggles.
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.
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.
Filed Under (Communication, Critical Disability Studies, Film) by Estee on 06-11-2013
Hi everyone…sorry I haven’t posted in a while, but this is well-worth visiting at York University in Toronto tomorrow night:
Narratives on Ability with
Geradine Wurzberg, Director of the Film, Wretches & Jabberers
November 7, 2013 4-6 p.m.
Nat Taylor Cinema
North Ross Building 102
More Details Here: Narratives on Ability
Well, I finally posted my Master’s Research Paper that I completed in August and defended in September. You can read it here. Much more work will be going into this as I now pursue my PhD in Critical Disability Studies. I have to say, that a 65-page limit on this topic was extremely challenging. I look forward, as well, to presenting on October 12th in Denver at the Autism National Committee (AutCOM) conference.
I successfully defended my thesis on the film Wretches & Jabberers this week, a day before a bird-deluge on Adam. (I’ll post this thesis to my website later this week). It is my hope that we can all promote this self-advocacy film to be the new film people talk about autism (rather than Rain Main). The day before my defense, Adam got bird-pooped on by a rather big bird. He was not happy about it, but I kept explaining that despite it being messy and a damper on his recess time, it meant he was going to have lots of good luck! It seemed to work; Adam smiled in the car all the way home as I heralded my enthusiasm about bird-poop-fortune.
But today I really want to point to something I am very happy about: a review of Naoki Higashida’s book (he is the film subject in Wretches & Jabberers who lives in Japan) in our very own Globe & Mail today – arts section, page R.4. It would be wonderful to keep talking about this and the film and the contributions that non-verbal autistic self-advocates make to our understanding about autism. I hope this review will also lead people to watch the film.
The end of the day of Adam healing from the croup and us both watching repeats of Wretches & Jabberers for my thesis. Adam can’t help laughing at the scenes of Naoki jumping up and down to Rimsky-Korsakov’s Flight of the Bumblebee – flapping his hands, moving the window blind from side-to-side, opening and closing doors, and running up and down the stairs to then, finally settling at his computer utterly focused and well, communicative. I can tell Adam’s feeling better as he giggles and then afterwards decided to do some puckered-lip kissing practice on my cheek.
Watching these clips from YouTube are also very important for anyone wanting to discuss it. I would imagine we’re all concerned about Tracy’s living situation and want that to change. As I write an academic paper about a subject that I am personally invested in, I also feel a responsibility to my son’s community. I am also selfish and grateful at the same time – selfish in not wanting Adam or anyone like him to have to be in Tracy’s position as well as inordinately grateful to both Tracy and Larry and their supporters for going out into the world to do this work. We are all motivated by personal circumstances which enables our emapthy. I am hoping to articulate my personal interests and vulnerabilities in my own academic writing, where one is otherwise supposed to be, in a traditional empiricist sense, emotionally removed and (supposedly) objective. Others have discussed this as well – Behar in The Vulnerable Observer, and Douglas Biklen in Autism and the Myth of the Person Alone and recently this new paper by Andrew Bennet in this issue of Disability Studies Quarterly discusses the possibilities of our mutual vulnerabilities – as researcher and research participants.
I really appreciate this clip that comes in addition to the film, as I wanted to know more about Mr. Thresher’s situation. I don’t live in Vermont, but I do think that the issue should be a politically active one here in Ontario as our autism societies take up adult autism issues. How can we enable autistic people to advocate on their own behalf for their own needs? How can we support them? This film should be shown at every chance in discussing positive living situations outside of institutions and segregated shelters.
I also work hard to get Adam to type and use AAC and seek people to support Adam. It is frighteningly slow for people to believe that Adam can understand, read, and have the ability to type and both of us need more support that is difficult to find here in Ontario. I’ve been writing this blog since 2005 and been telling people he could read words, numbers and book spines since he was 11 months old. I find it really frustrating if some verbal behaviourists teach him the word “cat” over and over again so he can say it correctly when he’s been reading it since before he could walk. The autism curriculum must change to include education and academics in its programs to be truly supportive of the autistic person’s right to education.
In terms of typing, his school will support him visually, and I think because of the time I’ve spent typing with Adam with support, that he is able to type to some extent at school without it. Yet I think with better support he could do better there and I’m trying to teach people myself. If you are a parent, you know this is a labour. However, I can’t understand any longer, as Adam and I have also been informally tested (yes, that’s the doubt people have about autistic people) that Adam’s communication is his own, and that with the right kinds of supports and teaching, he could communicate better by typing. This is seen in the same way deaf sign language was once denied to deaf people in favour of lip reading and speaking. Yet, communication is also a right. To deny a person with a communication disability such support and access will become an issue for law and policy, but our important work for now as activists and educators is to keep showing the work of autistic self-advocates, such as Larry and Tracy, as well as autistic people who are prolific bloggers and writers, and to keep breaking down barriers within our own homes, communities and schools, one person at a time.
My last thoughts for the evening: Isn’t it better to support an autistic person in their autonomy rather than to fret about what level of dependence they are going to have on their families or in group homes? In other words, isn’t the support of autonomy and our mutual interdependence a much more empowering prospect for us all? (I have to add, I am not intentionally favouring those who are able or have the desire to type or use AAC. There are those who are not able to use it and we have to consider the people missing from this dialogue).
Part of my work wonders why such doubt exists regarding Adam and why we’ve had to struggle with so much resistance with educators and clinicians. I do think that Adam, like other autistic people, will dispel the doubts. But I also wonder if we have to ask ourselves what or why we doubt, exactly? What do we fear if people with communication disabilities can communicate via other means? Is this the right question?
Filed Under (Ableism, Acceptance, Activism, Advocacy, autism, Autism and Intelligence, Autism and Learning, Charity, Communication, Community, Critical Disability Studies, Language, Organizations/Events, Politics, The Autism Acceptance Project) by Estee on 09-05-2013
I’m writing my thesis and am hankering to blog – so many things on my mind with the recent Ontario budget proposal, the ever-so teensy weensy allowance for an individual on ODSP to take home a couple hundred bucks a month and the way we may have to reconsider how we advocate for support as autistic families. Can I say at least it wasn’t cut altogether as was the original threat? Also in the budget is a brief mention of autism services and a reduction of wait-list times for those in urgent need. I’d like here to write a post for all of us to reconsider what all autistic people and families need, and how we have to lobby.
I’m writing my thesis on autism advocacy, in particular, among non-verbal populations. There are wonderful contributions to this already out there to be cited. Also, The Autism Acceptance Project (TAAP) is in meetings, where the autistic population is setting the agenda and I am a facilitator/organizer (also we hope to announce an upcoming event soon). I’ve thought long and hard about the work of autistic folks and re-evaluate my role as a partner and ally to Adam and others. The most fundamental concern I have that will effect all autistic people and their families is autistic rights – to be viewed as valuable citizens; this means that the “spectrum” concept of functioning does not preclude rights and that all people are equal and valuable. This is addressed in substantive equality, where differential treatment must be sought for many to achieve equality (Rioux, 1999). In other words, many disabled people require support and accommodation to participate in their chosen ways in society. What is particularly worrisome to me as a parent of an autistic child, is the lack of access and lack of education. Yet, I also see our traditional education system crumbling, which to me, provides a new opportunity to finally give access to education for everyone. This post proposes not only services to alleviate families, but many opportunities for autistic people of all ages.
Here, I see potential for those who are also ABA lobbyists (I will specifically mention this group since ABA is cited in all government literature now and as I predicted in 2005, it would be the only service available to autistics) to change their drumbeat from tragedy to substantive rights. I’ve cited recently the Jefferey Moore case in British Columbia (2012) wherein it was stated that the notion of remediation risked adverse effect discrimination. I would argue the same – that when we believe we have to remediate an autistic individual, or any individual with a learning disability, before allowing them access to school, or to an education, then this is a fundamental oppression and devaluation. ABA schools can consider integrating academics into their methods as well as any other therapies out there, thus supporting, enabling, respecting (instead of normalizing) autistic being. That Augmentative Assistive Communication (AAC) and other supported communication techniques is not considered a right to communication should be an outrage to us all. At one time, the Deaf community was not allowed to sign! Now, the same thing is happening to the non-verbal autism community. The most fundamental right is the right to access communication. Yet, teachers also have to learn how to support an autistic person to use them, while also considering the autistic learning style (there is research out there you can find easily on this). There are enough autistic independent typists as well as teaching methods available. I could go on — video monitors, white boards, computers – these are fundamental for autistic learning and we all have a wonderful opportunity to learn to support autistic individuals! My question to educators and supporters, how can we change the way we do things to support autistic rights?
Back to the the right to education – music, art, math, science, geography – all of these are fundamental to an individual’s quality of life. Adam is autistic and has a curious mind. When he is introduced to new topics, they may be hard at first if they are taught in traditional ways, but as he learns he becomes more interested, proud and excited; doors open and he wants to learn more! Should an autistic person in a Verbal Behaviour or ABA program be denied access to academic material when they have read the same word since they were a toddler? Or, can this new material be integrated within a program? How creative can we be?How can autistic children be allowed access to their own interests and material and how can teachers facilitate their continued learning of what interests them? These are also fundamental rights – the right to choose and to follow one’s own path. While it has been cited numerous times that everyone – disabled and not – can benefit from an individualized approach to education – it as also been deemed difficult in the traditional system where teachers have been the gatekeepers of knowledge.
I was turned on recently to Sal Kahn, who has created a series of educational videos on YouTube which are utilized by some classrooms. Some teachers are reconsidering their role as facilitators instead of lecturers at the front of the classroom, monitoring a child’s work on the computer using Kahn’s lessons, and then stepping in to help when needed. Online learning can be very effective for autistic individuals and must be considered if we are to enable a future of autistic participation and contribution. This provides fantastic opportunities where video learning and technology – such as Mindcraft – are enablers – autistic people can build in this program, make art and new worlds, and this can be a monitored learning program (and many do which attests to innate autistic intelligence and ability). Online friendships and self-advocacy, as reported by many non-verbal autistic individuals, have also enabled better socialization skills in virtual and real time. How can rethink such spaces that are already at our disposal? How can we allow for autistic work to take place also on autistic terms?
We have to reconsider these spaces from traditional ones to creative ones where all people can participate. At the moment, I can say that while I work to have Adam included, he is mostly segregated – goes to school, goes to a few programs with an aide worker which thankfully enables him to participate. Within the system at our disposal, we work with Adam’s team to provide him the best we can and we are all learning. But this is what I ask of all Canadian society – at least give Adam, and others, the opportunity to participate. To-date, he is not allowed. Even trying to get Adam into certain schools is fraught with traditional testing – not allowing him frequent pre-visits or adapting work in formats that he can best respond to. All I can say is, the world is losing out too for Adam can give back so much.
As I consider my daily life as Adam’s mother, and how my heart wrenches for him – I at least want him to have choices. This drives my work towards a more inclusive future (which may require specialized education in the real sense of education for his future – not sequestering, normalizing and presuming incompetence) for our children and for families to support this, this also traverses to the arena of advocacy with such questions as: What of my role as his parent and an “autism rights activist?” How can I, as a non-autistic person who is used to traditional hierarchical boards, committees and organization, become familiar with an alternative way of organization and allowing a new space, or room, for autistic self-advocates? How can autistic people enable us when some of us are listening? What about virtual spaces and how might they be maximized? How can we allow for dissent and debate that reflects true democracy and recognize that not all autistic people feel the same way, not all people require the same supports, and not everyone will agree? What must we recognize in ourselves as neurotypical teachers, parents, therapists, caregivers and charity organizers in stepping aside and lending a hand to create this space? In speaking of charity and it’s historical role of “handing out,” how can we build communities that support self-advocate needs? In one sense, I truly understand the need for autistic people to have this space, and predominant “voices,” if you will, but we also all have to recognize the important role of allies and parent supporters and educate families about the history of the autistic self-advocacy, and its fragility. We cannot afford to lose the ground gained by autistic-self advocates! Autistic people also have to allow for us to become political facilitators alongside autistic people without us more verbally loquacious dominating the agenda or “speaking over” autistics. Autistic people can teach us patience and learning to listen without speaking over. Let me ramble here by making another comment – research teams and funders have to recognize this urgent need for emancipatory research that requires much patience and time, and make allowances for it.
Here, I acknowledge the independence via interdependence model that I write a lot about – that we tend to advocate for complete autonomy and independence that drives our therapies and expectations for autistic people before giving them full value and citizenship. Yet when we truly look at how interdependent we all are – on our families, on technology, on a service system, none of us are independent. This is the area in which we need to discuss when we talk about autism services – not a cradle to grave service where we put autistic people away, but a collective economy of support where autistic people can also contribute and where we do not view responsibility as something tragic. I can only think that in North America this notion is strongest – when I lived in Europe, families often stayed in the same home all of their lives and supported one another. Part of me can’t help but think that this notion of supporting our children into adulthood is a construction of the industrial revolution – where children were sent into factories to work. As we see those structures crumbling, I hope we can reconsider that supporting one another should be something to be grateful for, not a tragedy. Will our quality of life not improve when we know that all of us who need more support at various points in our lifetimes, will also be respected, supported and not be made to feel guilty or less than for it?
Finally, I can think of all the “job creation,” for autistic people and support workers alike when I think of Ontario’s new proposed budget. Yet as long as we are wedded to this false notion of “independence,” we might continue to build cities which isolate everyone. For certain, this is the ultimate paradox – I think we all feel isolated in many concrete jungles, and we need a call to building collectives and communities which utilize and respect the varying contributions of all citizens. To respect human variation and possibility for re-building, I draw on Jennifer Sarrett’s Autistic Human Rights: A Proposal:
“[H]uman rights are to be enjoyed based on fundamental frailty and vulnerability inherent within the state of being human. By focusing on vulnerability, a state that all people experience at various points in life, disability and difference becomes an experience that can tie all humans together.” (2012, Disability Studies Quarterly, unpaginated)
Also, quoting Eva Kittay, Sarrett includes that while not all people are equally vulnerable, that is, some people are more vulnerable than others, it does not mean that the more vulnerable are less worthy or entitled to justice, equality and human rights:
This principle, in contrast to the others, would not be based on our equal vulnerability, nor on our possession of rationality, a sense of justice, and a vision of our own good. Instead, it would be based on our unequal vulnerability in dependency, on our moral power to respond to others in need, on on the primacy of human relations to happiness and well-being.” (Kittay in Sarrett, 2012)
Sarrett further states that,
“human rights do not have to rely on a single doctrine – dependence or fragility or oppression or humanness or capability. The autism-based model described here is built on a foundation of dependence, individuality, and valuing human diversity, allowing for the inclusion of the entire sphere [note: she uses ‘sphere’ instead of ‘spectrum’ which she considers ableist] of cognitive, intellectual, physical and psychiatric traits within the human condition. Accounting for and respecting variations in the human state are central to the ongoing and dynamic process of developing human rights models most effective for any time and place. Any model of human rights should be in constant conversation with contemporary issues of diversity, medicine, law, and advocacy. Thus, all models…should be subject to alterations and updates to ensure the most acute and powerful application in every community and for every person.”
She notes that while some positive rights have been granted for education and health care, that the autistic rights model, fashioned after civil rights, has difficulty with the promotion of negative rights which includes the right to assemble. Sarrett says that negative rights are integral to this inclusive model of human rights, but self-representation and advocacy can be difficult for many non-verbal advocates who have assembled more easily online, and find real-time meetings and interactions very difficult. This asks us to reconsider how accessible our boards, committees and systems and how they enact as barriers to many autistic people. How might we re-organize our organizations? I, for one, believe that the Internet provides the future possibilities for the democratic process.
Sarrett, Jennifer (2012). Autistic Human Rights: A Proposal. Disability Studies Quarterly. Vol. 32. No. 4.
“The voice of disabled people should be present in both disability studies and applied approaches to disabled people, but the voice should take different form in each. The influence and direction of disabled people should permeate the applied fields. If rehabilitation professionals really believe in self-determination for disabled people, they should practice what they teach by adhering to an active affirmitive action program in their own departments; by adopting the books and essays of disabled people into their curricula; and by demanding that disabled people have an active voice in conference planning and on the platform at conferences. In the liberal-arts active voice, the creative voice, the narrative, can be articulated in the humanities, and in qualitative and intepretative research in the social sciences.” — Simi Linton, Disability Studies/Not Disability Studies, (p. 141-142).
I would like to very briefly discuss the current qualifications of becoming a Board Certified Behavioural Analysis – the practitioners of the most popular therapy for autistic children in Canada which is Applied Behavioural Analysis. It is an excellent topic for further discussions and research into clincial and educational rehabilitation in the field of autism in Canada which support a medico-pedgogical approach that has become problematic for autistic agency.
DEGREE VERIFICATION: ALL applicants for eligibility to sit for the examination for Board Certified Behavior Analyst MUST attach documentation that they have a graduate level degree (master’s or doctorate level) in behaviour analysis or a related field, as recommended by ONTABA.
Here is a description of ABA from ABA International Org:
As in other experimental sciences, research is usually classified as basic or applied. In behavior analysis, basic research attempts to identify principles underlying behavior change. For example, basic research may attempt to improve our understanding of reinforcement or shaping.
Applied research attempts to identify effective ways of dealing with behavior problems in schools, clinics, workplaces, and other settings.
Recently, I had a private discussion with someone who is to become a Board Certified Behavioural Analysis who has a personal interest in critical theory and interpretations of disability. This person was having some major difficulty with the attitudes and procedures surrounding the approach and decided to take the interests further. There are a few people in ABA who have endeavoured to study critical interpretations of disability studies for similar reasons. While this individual remains a practitioner, it was conveyed to me that allegedly, a Master’s degree in Critical Disability Studies (or I gather any Liberal Arts studies) will no longer be accepted. (Note that CDS falls under the Faculty of Health at York University, but is a multidiscplinary area of study). Rather degrees in support of the pshyc-sciences are necessary for becoming a BCBA (as they are for other rehabilitative professions). I think it would be an important research direction for someone to examine this further, and to invite those within the field to engage in discussions why a critical study of disability is important to the field of autism education and inclusion and social equity in the same way Simi Linton discusses in the quote I began with in this post.
The criteria for acquiring a BCBA certification is a Masters degree. However, the BCBA programs now direct it’s applicants seemingly away from Critical Disability Studies towards “Applied Disability Studies” in some academic institutions like Brock University.
Linton’s article is titled Critical Disability Studies/Not Disability Studies to highlight areas of difference between the clinical practice/approaches between one where the voices of the disabled are included, not objectified. In thinking about inclusion in making clinical practice better, she says, “feminist scholarship has also turned the entire academic curriculum inside out to reveal the epistemological consequences of the androcentric biases in the knowledge base” (p. 142).
She also highlights the objectification of disabled people through the sciences and that it “can be redressed by developing scholarship from the position of the disabled subject; by developing alternative methodologies to the empiricist approaches that have dominated the study of disability; by developing an active voice in the humanities; and by breaking down stereotypes through the analysis of metaphors, images, and all representations of disability in the academic and popular cultures.” (ibid).
Do ABA practices continue to perpetuate bio-determinist views; to “explain human behaviour and achievement in terms of biology?” (ibid). While I would argue that yes it does, I would also like to suggest ways and open up the discussion with clinical practitioners to not simply objectify the literature, performances, art, and other contributions for analysis, but to consider ways of including both critical interpretations and the inclusion of autistic people as part of our learning and practice, and in shaping the practices that have been so often used on people with autism. I agree with Linton that there are many people in clinical fields working for political change for the disabled, but as she importantly notes, it’s not because of the knowledge acquired from the applied sciences, but from a “personal and moral commitment to improve the lives of disabled people.” (p.148). Futher consideration into multidisciplinary curricula in the area of clinical practice should be discussed. Including autistic people and work is a way towards creating supports that could lead to more effective and supportive methods that also acknowledge autistic challenges, strengths, and inherent civil rights.
Linton, Simi. “Disability Studies/Not Disability Studies” in Claiming Disability: Knowledge and Identity, pp. 132-156, 1998, New York University Press.
Is there a place for the disabled in 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.
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 is our Adam Family.
Pothier, Dianne and Devlin, Richard.”Introduction” in Critical Disability Theory: Essays in Philosophy, Politics, Policy, and Law, edited by Dianne Pothier and Richard Devlin, pp. 1-24, 2006.
I’m back at York U and have taken it upon myself to persue my M.A. in Critical Disability Studies and focusing on autism in every context I have time for. Outside of general readings, I noticed two books I’ve pre-ordered and eagerly await to devour:
Far From The Tree: Parents, Children & The Search for Identity by Andrew Solomon and Autism: A Social and Medical History by Mitzi Waltz.
“Disabilty” is a relatively new word in our language set to describe the social barriers that render some people unable to participate. It isn’t a word that we will find in historical records about disability. Rather, we find words like “lunatic, idiot, leper, cripple,” to name a few historical references to disability. While the history of disability is a burgeoning subject now, my generation never studied it in school. Some of us may not have even studied civil rights history. While we can locate histories in texts, records, art, and now through oral histories, we are just beginning to recognize that uncovering history is a very important aspect to identity. All of our histories are important and so many of them go unrecognized and untold. I remember learning British History in elementary school, and feeling valueless because my history was ignored, not validated, and considered not worthy of digging into. So many immigrants or different ethnicities feel the same way, although we have growing bodies of history that are now being taught in schools.
While autism memoirs are a way of telling our history now, we can do more to reach back and find autism in history. Uta Frith and Harlan Lane are two authors that come to mind who have written about specific autistic individuals in history.
Autism in history is a subject that requires much more attention. I’m hoping that the simple binary of “medical versus social model” of autism history will be avoided in the books about to be released. “Rethinking this polarity is what historical research and methodologies has to offer disability studies.” (Anderson and Arden Coyne).
In terms of identity, autistic identity or the identity of families with an autistic member, it is important to avoid the stereotypes of this binary that we encounter, especially in autism “advocacy,” although it would be an important a study unto itself of how we view autism today.
Our identities are complex, located within race, gender, income, nationality, culture, and so much more. We need to challenge ourselves to move away from the idea that all experiences of people with disablities, or their family members, are “conflated.” (Anderson & Coyne). History must also be viewed through the prevalent views of the time period, and we cannot impose of modern views upon it, for our interrpretations would be skewed. It’s more enlightening to look at history and compare it to our views today and in how we might improve as a society.
I hope for more literature on autism and history. I’m not of the belief that we all need to be autistic to write histories about autism but the practice of locating ourselves in any research must be something we undertake more rigorously, upfront, by stating our own views, considering our bias, and offering our biographies. I’d like to see this not only in social research, but also in medical research. We need to promote further studies to help define autistic identity. If we do it carefully and ethically, we could assisst with the rights of the autistic person in our society.
Julie Anderson and Ana Arden Coyne, “Enabling The Past: New Perspectives in the History of Disability,” European Review of History 14:4 (December, 2007), pp. 447-57.
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.