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Tuesday, March 18, 2014

The Challenge of Honesty and Respect in Autism Narratives.

The other day I was listening to a radio interview with disability advocate, Sally Richards. She's the mum of a severely disabled adult son, and along with a few other parents developed an independent accommodation option for disabled people known as an intentional community. You can hear the interview with explanation of the community concept below.

At the end of the interview Sally reflects on her life with her son, and ponders the idea that if she could go back in time would she wish for a non disabled child. She responds that her love for him means she would never wish him away, but that she would also never want the stress of raising a severely disabled child for another family. This view point resonated immediately with my own thoughts but I also knew there would be some, particularly from those living with disability who would feel anger towards Sally for making that point. I see this argument play out in the ASC community from time to time particularly in conversations related to autism and genetic research. For some, admitting life can be hard when caring for an autistic person or wanting to avoid having a child on the spectrum is tatamount to dehumanising or diminishing the value of said child by implying their existence causes suffering for others. But what if it's true that hardship follows autism in many cases?

Is it really reasonable to suggest good disability allies and advocates can't talk honestly about the challenges as Sally does in the above interview, including those faced by primary caregivers without betraying the aims of disability advocates?  Is it possible that despite the independence and self advocacy Sally has worked tirelessly to grant her son her position of not wishing those unforgiving years of stress on someone else is ableist ?

How can we discuss the challenges for those who are disabled and those of us who love and necessarily care and advocate for without perpetuating fear of disability? To work for acceptance and inclusion but also the support needed to cope with the added care load many families struggle to manage. It's incredibly difficult to balance and we see this tension play out in various contexts, particularly online. As many of us know it can get ugly and unfortunately the fallout goes beyond those directly involved.

I agree with the self advocate position that we must never blame a victim for the abusive actions of others, and for some the expression of difficulties in caring for those who are unable to care for themselves runs to that thought.  In that it places the blame for difficulties at the feet of those who have no choice in the burden they carry as a result of their disability. But I also believe to claim discussing the hardships that can come with caring for a child with a life long disability is victim blaming or degrades that person's dignity is to conflate the stress of managing autistic behaviours with blaming autistic people for them. There is a difference. 

There are some families living with extreme behaviours that do push them into crisis and burnout. It doesn't mean we apportion blame onto the autistic person for behaviours they may not be able to control, but the fact is their actions do create stress in others. This is undeniable. If a family says they cannot cope, it is not the same as saying we blame the autistic person for provoking that reaction in us (in the way a rapist might try to say a woman provoked an attack by wearing a short skirt). While it's not OK to harm anyone intentionally, can we not acknowledge that some behaviours can create chaos and chronic stress for both the autistic person and their families. To deny or avoid recognition of this because someone might be offended by the implication of blame leaves us going no where to addressing some very real problems. 

So how do we create a cohesive and honest narrative about the experience of autism that fosters the fundamental right to respect that all people are due, and also acknowledges the difficult parts? How do we admit autism can be hard to live with, and caring for an autistic person can be hard too, while working to counter the diabolical narrative of all gloom and doom that's commonly seen?

Although I see the comparison often made, autism isn't like race or sexual orientation, in that the impediments attached to the latter are purely the result of social construct. ASC is a disability by definition, and consequently carries inherent difficulties to a lesser or greater degree for each person. Fear of difference is indeed a community wide problem that demands addressing but denial of difficulties associated with a disability does nothing to counter ignorance and misinformation either.

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