New Autistic Self-Advocacy Projects Worth Watching

Filed Under (Activism) by Estee on 28-10-2012

There are those that say we don’t exist. There are a few who says neurodiversity is simply an ideology and not about “real” people. Those in the videos, they claim, aren’t autistic at all. They are fakers. They don’t have it as bad.

There are people who continue to parse hierarchies of suffering in order to make a case that they are more right and the rest are wrong. Those who claim priviledge of declaring a “truth” or “reality” should be approached with caution.

To that end, I invite you to consider what makes a social movement? What makes a culture? If shared experience, arts, space, embodiment, to name a few attributes we might use to describe them, then I think the continued affirmation of autistic existence that has created a neurodiverse culture or movement (that is the label as it stands today anyway, so let’s go with it) can expand our understanding of human difference and the challenges that many of us, or our loved ones, face. We are all on the ability-disability continuum by viture of life, ageing. While I do not claim to share the exact embodiment and experience of my son, I share the effects of his disablement in society every day. Considering the personal and shared experience of disability might be a way that we can forge empathy, sensitivity and new understandings. We have so much to share and discuss and there are many serious issues facing us.

I introduce (to those who haven’t discovered them yet) two new autistic self-advocacy organizations (this first one is a project OF The Autistic Self Advocacy Network), The Loud Hands Project,

and Autistic Intelligence Org, a mix of autistic self advocates and allies.

Also check out the Autistic Passing Project

I’m enthusiastic also about the age group of some of the new autistic self advocacy orgs, projects and blogs that are sprouting into public view. It’s not going to be easy. Autism organizations have racked up a questionable history, and there are many issues that we need to trouble and talk a lot about. Claiming identity and being proud of it is something personal as well as communal. Self identity and embodiment is also shaped by challenges, pain and even suffering — within the body and outside of it by the barriers we claim to belong to social construction. Organizing can be a way to welcome more people into the discourse. Embracing all of the aspects of being disabled or impaired is a way to be inclusive of everyone who has a stake in this.

I think all of us should encourage and support the efforts by autistic people. Projects help us to work out the way we think and feel about our situation as well as working for needed supports and asserting rights. If we are to critique them, let’s do so with respect. I think the purpose of self-advocacy movements has been largely misconstrued (or not even understood in a culture that both raises money for curing just about everything and proclaims that other bodies outside of their familiar own are “tragic”). We need to work on improving our efforts at enabling respect for all human life without demeaning or belittling an assertion of an autsitic identity (if one chooses to self-identify as such) or reinforcing the power structures that have oppressed disabled people for hundreds of years.

Goodnight Moon

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

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

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

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

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

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

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

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

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

Bulldozers nearby
tear down and
build up concrete progress.

What are we making?

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

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

Disability Studies in ABA practice

Filed Under (ABA, Critical Disability Studies) by Estee on 07-10-2012

“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.

This from The Insitute for Applied Behavioural Analysis:

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.

An example reading list which is telling of the area of focus is here.

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.
Reference:

Linton, Simi. “Disability Studies/Not Disability Studies” in Claiming Disability: Knowledge and Identity, pp. 132-156, 1998, New York University Press.

Reflections on the Acceptance of Disability in Society

Filed Under (Acceptance, Autism History, Autistic Self Advocacy, Critical Disability Studies, Disability History, DSM V, Ethics, Inclusion, Research) by Estee on 06-10-2012

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.*

Reference:

*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.

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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.