As
you all know, I've spoken numerous times on this blog about the
problems inherent in the mainstream media's understanding of Autism
Awareness Month. The focus on curing, the pathologizing of
personality types, and other such issues are just a few of the many
facing those of us on the spectrum at this time of the year. What I
haven't touched very much on, however, is simply how little real
understanding there is among people. Indeed I've found that, despite
everyone being so very terrified of Autism, many don't even really
understand what it is and what the best ways of working with it are.
Recently,
I was visiting my mom's side of my family in Kingston, Ontario and
while I was there, I had an opportunity to talk to Kingston's M.P.P.
(Member of Provincial Parliament for you non-Canadians out there)'s
aide about my concerns over some of the provincial government's new
Autism spending priorities. My cousin is also Autistic you see, and
he felt the need to go provide a real human face to the whole thing.
Naturally, I enthusiastically tagged along. While there, I took the
opportunity to explain my concern over a recent image released by
Ontario's provincial government in honour of Autism Month encouraging
people to “light it up blue.” I talked about how Light It Up Blue
is a propaganda campaign promoted by Autism Speaks, how it undermines
the ability of those of us on the spectrum to speak and exist for
ourselves, and how otherwise problematic the campaign is. I even
suggested that the government use “Red Instead” and
“Neurodiversity Month” in place of Light It Up Blue, since they
are more respectful of the agency and rights of Autistics. Well, an
amazing thing happened; the MPP's aide not only listened, she smiled
in approval and understanding, as if a rainbow-coloured,
infinity-shaped lightbulb had gone on upstairs. She thanked us both
for the input and told me she had never considered what I had said
before but that she'd get right on bringing it to Sophie (the MPP)'s
attention.
I
had made a difference; and it felt amazing!
The
whole thing really drove home for me how little most people know
about Autism. Granted, we've all heard the word, seen the propaganda,
and probably all either know someone on the spectrum or are there
ourselves. For most individuals, however, that's where it ends. The
reason why most people think Autism Speaks is a great and charitable
organization, for example, is that there is a precious lack of
understanding. This is of course, not helped along by the fact that
most information about Autism is presented by clinicians,
politicians, parents and charity groups, with most of Autistics'
actual stories being drowned out by these voices. It's a frustrating
dilemma because most would probably turn wholesale against the
mainstream understanding of Autism if only they knew better. This
isn't meant as condescension; it's merely a fact.
There
is a common idea among activists that it shouldn't be the
responsibility of the oppressed group to explain themselves and
educate others. While I understand the sentiment behind this, I don't
find its fair nor applicable in the case of the Neurodiversity
movement precisely because of this lack of information. While its
true that we shouldn't HAVE to explain to others what its like living
on the Autism Spectrum, the reality of the situation is that we often
must. After all, if we don't, who will? If those of us who are
neurodivergent don't speak up and contribute our human stories to the
conversation, then the discourse will continue to be dominated by
researchers, clinicians and parents' groups. The fact is, most people
do want to help and meet us where we are, but we first need to help
them know exactly where that is. Education is an essential part of
improving the world for those with ASD and other neurodivergent
conditions. It's the only way we can fight back against all the lack
of understanding and actually build a world that is fair to everyone
no matter the circumstances of their birth.
In
the words of Peppy Hare from Star Fox (because it's kind of become my
obsession right now), “Do a barrel roll,” educate others, and
keep fighting the good fight!
Yours
in Diversity,
Adam
Michael
