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Why talking about autism without folks living with autism isn’t good enough 

"Nothing about us, without us"

Zso Michele is a member of Autistics United Nova Scotia - Wabanaki Confederacy & Mi'kmaq Territory. They are certified as an Autism Specialist by the International Board of Credentialing and Education. Standards and hold a Masters degree in sociology from Queen's University. - SUBMITTED
  • Zso Michele is a member of Autistics United Nova Scotia - Wabanaki Confederacy & Mi'kmaq Territory. They are certified as an Autism Specialist by the International Board of Credentialing and Education. Standards and hold a Masters degree in sociology from Queen's University.
  • SUBMITTED

Did you see the image of Donald Trump, hunched over the massive desk in the Oval Office, flanked by half a dozen other white men while he signed an executive order eliminating funds to international organizations that provide reproductive healthcare to women? The incongruity of the scene and its effects was so striking that the image went viral.

Such graphic representations of gender inequity in government, academia and big business make easy targets. The all-male conference panel, for example, is mocked as a "manel" and has its own Tumblr and Twitter accounts.

In 2019, many of us recognize that endeavours intended to serve the interests of particular social groups require, at a minimum, meaningful consultation with members of these groups. A person's social location—characterized by the historically- and culturally-significant positions we hold relative to others—can offer authoritative insights into our experience. The image of affluent, white male politicians taking action to restrict the reproductive choices of women in developing nations is offensive, not least because they are making decisions about the lives of people very different from themselves.

Building on the pioneering work of the civil rights and women's rights movements, the disability rights movement is seeking to advance a social model of disability which situates disability in its social context, similar to gendered and racialized categories. A social model of disability differentiates between physical, neuro-behavioural and psychological impairments and the obstacles created when people with such impairments are excluded in their social environments. Ableism—discrimination against people with disabilities—often feels more disabling than the limitations created by our impairments.

For autistic people, ableism presents in a variety of ways: assumptions about our lack of competence; workplace discrimination that results in an 86 percent unemployment rate for autistic adults; paternalistic efforts to speak on our behalf. While parents of autistic children should generally be respected as experts on their kids, this does not mean that these parents may be counted as allies to the autistic community.

Recent stories in the media about autistic people (including one in this publication: "It's time for housing options to get better for people with developmental disabilities advocates say," Oct 24) have also failed to represent our perspectives.

What would the world look like without autism? Without the David Byrnes and the Greta Thunbergs of the world? In her book Thinking in Pictures, Temple Grandin answers that question saying "you would have a bunch of people standing around in a cave, chatting and socializing and not getting anything done."

I don't need to point to these exceptional autistic people to justify our value as human beings. We have an inherent right to exist and be included in our diverse society. We can "speak" for ourselves, even if we might communicate differently. Those with the loudest voices really do need to pass the mic. Nothing about us, without us.

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