With Tidings of Struggles and Joy

Filed Under (ABA, Acceptance, Activism, Communication, Community, Critical Disability Studies, Discrimination, Human Rights, Inclusion, Joy) by Estee on 29-12-2014

IMG_3315

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.

Comments:

Post a comment

You must be logged in to post a comment.

ads
ads
ads
ads

About Me


ESTÉE KLAR

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