As Adam school closes, we have our Plan B which does involve his acceptance into a high school language arts community in a school devoted to social justice. Adam is in grade seven but will jump a grade. Some might say this is Ironic, no, for a child who some therapists said couldn’t understand, let alone speak fluently? But it won’t all be in school. In thinking about the schools, policies and systems that are currently in place for autistic people in Canada, I came across the following:
“Heidegger says we are accustomed to having conditions given so that we can plan out definite results. We are used to being able to plan, to calculate, and when we cannot do so, we feel out of our depth…” I fell onto this while reading “Our Dissertations, Ourselves” (2014) but it has another meaning for me. I have promised Adam (and myself) that I would never put Adam into an institutionalized setting/school or group home. The IBI program that I strongly critique is anchored in calculations and definite results or outcomes, even when they are built on false promises because of false assumptions/premises. We want to depend on others to much of this for us… to solve a “problem.” In this, I like what Carol Bacchi asks “What is the problem represented to be?”
This is the core of how systems and autism policies are built.
I think of it this way, we really shouldn’t launch into parent-hood without recognizing that no matter who the child will be, there will be challenges, systemic and otherwise. The neoliberal system also in which we all live works against children by suggesting that everyone can work (and this is also disguised as fulfillment and leisure which often creates a tension with domestic work). I admit I resent this tension. Parenthood requires all of me. It requires that I work outside of existing conditions neither serve Adam nor our values. It is not easy to work outside of systems, or meander in and out of them as we see fit. But right now, we feel it’s necessary.
Christine Sorrell Dinkins and Jeanne Merkle Sorrell (2014), Our Dissertations, Ourselves: Shared Stories of Women’s Dissertation Journeys. Palgrave Macmillan
As we head into April, I thought I’d post Protest on the Plinth which states that the value system from the Nazi era hasn’t changed much today. If people make out disabled people’s lives to be “intolerable,” then how can we make safe legislation?” asks the disabled woman in the video. It is not egregious to point to what happened to the disabled during the Nazi era and unpack the value systems that linger today – that lead to the belief that disabled lives are an intolerable economic burden on society. Posters of the “costs” of the disabled to the German “folk” were commonplace.
Systemic mechanisms (government programs, schools, corporate bodies) that tell us what kinds of bodies (and minds) we are supposed to normalize, regulate, or get rid of, or what are “acceptable” minds and bodies. Charity campaigns don’t typically tell donors that they need to be patient as corporations or as individuals; that they to collaborate with disabled people, work alongside people with disabilities, or that it is a disabled person’s right to be educated (instead of remediated as a “ramp” to normative education -see Moore v. British Columbia, 2012). They don’t talk about autistic and disability rights. Charities are busy raising money, mainly, for cures.
When scientific and representational linguistics point to children “at risk,” we might instead ask, just who are we trying to “keep safe” and why is society so dreadfully afraid of people with disabilities? Remember to consider language and how it both reflects, and shapes, the way we consider people with the autism label. From where I’m standing, however, we are definitely at risk, not from autism, but from an intolerable society.
Do you need autism services? Here’s a thought on the NRA and their blaming (and stigmatizing) of people with “mental illness” (the term in and of itself is problematic). I strongly urge you (and applaud) Paul Applebaum’s response (he is from Columbia U). A psychiartrist himself, he notes that statistically, people with mental health issues are not inclined to violence. Yet, society seeks someone or something to blame and the NRA is leading the way.
On with my thought. If you have registered your child in autism services (think Adam Lanzer as I continue to write and that violence just a few weeks ago was blamed on autism) your child is on the state roster. If groups like the NRA succeed in having outside “experts,” who are never experts really, report to the state who is at risk of enacting violence, lots of bad things can happen to your child or adult family member with autism, as well as you as a parent. This is the complex situation with needing support for enablement versus how government support can turn against us.
Now on to more stigma and Margaret Wente of the Globe & Mail. First, why does she still have a job? On the cover of Globe T.O today is Chris Spence, the director of the Toronto District Board of Education who plagarized his speech. He was fired. Margaret Wente, also found out for plagarism, still has her opinion column job at The Globe. How do other hard-working journalists feel about her cheating? I for one have had enough of her naivete. She has written one too many comments on autism today in her foolish column on The Awful Truth About Being Single, mentioning that the only people who don’t mind being alone are autistic and asexual people. Another Wente blunder, not to mention a discriminatory remark that can further isolate people with autism who want to be social but find doing so with typical individuals often difficult. I think it’s time Ms. Wente get an education on disability rights and meets a lot of autistic people before she continues to write about things she doesn’t know anything about.
“Exclusion and margainalization are generally not created by the invidiual with disabilities but are created by the economic and social environment and unfortunately, by the state itself.” (From Ena Chadha’s “The Social Phenomena of Handicapping” in Elizabeth Sheey’s Adding Feminism to the Law: The Contributions to Justice, Claire L’Heureux Dube, Toronto: Irwin Law, 2004)
I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.
because finding joy doesn't come without struggle;
because the point is to find it;
because if an autistic person calls autism their way of being, not an illness, then it is;
because every human has value and is a joy;
because despite inhumane acts, I believe in humanity;
but most of all, because of my son Adam.