Hey fuckface, I can talk (and: on Autism Speaks)

The other week, I took a short trip to Aldi to nab some bargain merino tops (man, I love Aldi). As dad pushed me in my wheelchair to the cash register, I dumped my purchases on the counter, got out my wallet ready to pay, and smiled and made eye contact with the cashier. He promptly looked away from me to dad and asked, “how are you today?” The way he reacted, dad could have been pushing a trolley full of discount TVs instead of an actual person.*

Aldi store.
The place where dreams are made (usually).

Being treated like the Invisible Man** is not a novel experience for a disabled person. Sometimes it seems appearing in public with a mobility device or – heaven forbid! – a carer can render a veil of irrelevance over you. It’s not just a personal annoyance that makes it hard to get service in shops – being viewed as incapable or as though you don’t exist at all is part of a wider phenomenon by which disabled people’s voices are overridden and obscured by able-bodied people who make decisions for them.

The Invisible Man raises a fist in anger
The Invisible Man is enraged by my treatment

 

Just look at Autism Speaks, one of the world’s most recognisable autism charities. Widely derided in the autism community, Autism Speaks has come under fire for vilifying and dehumanising autistic people, its history of promoting a link between vaccines and autism, and its complete absence of autistic board members. The only autistic member of the board (ever!), writer John Elder Robinson, quit in 2013, stating he “[could not] in good conscience stand by” the activities of Autism Speaks and its founder, Suzanne Wright. Robinson wrote:

The absence of people with autism in governing or oversight roles has crippled Autism Speaks in its efforts to connect with the community. Any group that hopes to be accepted in service to autistic people must make autistic people its #1 priority, with no exceptions. The priority cannot be autism parents, or autism grandparents. It’s got to be actual people with autism.

He (and others) criticised Autism Speaks for doing very little for those who they purport to help. Despite its considerable media power and fundraising efforts, only 4% of their budget is devoted to funding services for the autism community. (They are primarily focused on research, but even that is not directed towards the needs of autistic people.)

Autism Speaks doesn't speak for me.
One of the many graphics protesting Autism Speaks. In particular, the puzzle symbol is considered offensive by some who believe it implies people with autism are incomplete.

I believe Autism Speak’s failure to service the needs of the autistic community is a direct result of their refusal to acknowledge the lived experiences and viewpoints of autistic people themselves. As Robinson said, this ultimately supports a view of autism as a “condition of children and infants” or a “diseased group that needs to be eliminated.”

 

An autism charity that is described as an “evil organisation” by those who it is supposed to represent. Some bonehead cashier overlooking me at Aldi. Even those (particularly in the medical profession) who are quite happy to talk about and over me but not to and with me. Sometimes it seems like society’s default reaction to disability is to speak over and overlook, and frankly, it’s really fucking dehumanising.

So in case you happen to encounter someone with a disability (yes, it happens, considering we represent about 20% of Australia’s population), don’t ever forget the core dictum of representation: nothing about us, without us. Or if that’s too complicated for you (Aldi dude, I’m looking at you), try treating us like actual human beings.

The Invisible Man raises his hands in a gesture of nonchalance.
Invisible Man OUT.

 

 

 

 

*You might be wondering why I didn’t just school this guy with what was running through my head at the time (ie, this post’s title). Or why disabled people don’t take every opportunity to attempt to correct every example of ableism they come across. My answer: I’m tired. Really fucking tired. Not only from my illness, but from the way I’m treated because of it. I can’t always be “on”. And sometimes, I just want to get my special buy from Aldi without having to educate some backwards, B&S attending bogan about disability politics.

**Probably a poor analogy, as the Invisible Man became quite a sensation, and was kind of an asshole.

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

8 thoughts on “Hey fuckface, I can talk (and: on Autism Speaks)”

  1. I’m sorry you had to put up with that. What a trashy person to not greet you, the person paying. Yet again we shall remember that humanity has some stupid, ignorant, people.

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    1. Thank you, Tony. It wasn’t a pleasant experience and obviously connected to deeper issues with the way we treat disabled people, but at the time I honestly laughed it off, as it was just all so ridiculous.

      Liked by 1 person

  2. I just want to say that while I agree with what you’re saying for the most part. I don’t believe that you can necessarily blame that one individual for the way you were treated.

    Today there is NOT enough education around the various disabilities that affect that 20% of Australians. Yes it’s extremely sad. But as a result of this, some may not know how to act around those who are disabled.

    That person may have been suffering from anxiety or another ailment and may have been completely clueless on how to react. I don’t think they deserve the “fuckface” name calling.

    I myself suffer from severe anxiety and at my previous job, an adult came in who was born with Down Syndrome. And I’ll admit, although I feel ashamed, I froze. I didn’t know enough about Down Syndrome to talk to them without fear of possibly offending him or not being able to communicate effectively.

    The like could have occurred in this situation. I just want you to remember that. He most likely didn’t mean it. And although I agree, a “hello” would have probably avoided this issue – this is only your side of the story.

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    1. I think it’s a bit of a cop out to suggest that this guy is not personally to blame for his behaviour towards me. Yes, society has terrible attitudes towards people with disabilities, yes he is just repeating the ableism that I see day in, day out. But he is not some innocent victim, and it does not excuse his behaviour.

      To be clear: he looked straight at me, ignored me, and turned his attention directly at my father. Blaming anxiety for being rude to people with disabilities is a bit offensive IMO. I suffer from anxiety and I don’t think it stops you from treating all people equally, and I frankly I don’t see how it correlates to a refusal to communicate with somebody with Down Syndrome.

      You are right, there needs to be more education about disabilities, so people like you don’t “fear” us.

      Like

  3. So many hugs. It’s not your responsibility to school everyone at all. And yes, the guy is a fuckface and he should be pointed out as the responsible party here. He shouldn’t be excused for living in a shit society that doesn’t educate people enough. He should be educating himself on being a decent human being.

    Liked by 1 person

    1. 👏👏👏 Yup, at some point you have to accept personal responsibility and educate yourself. Especially when with Google, the voices of millions of disabled people are there and waiting for you to hear them.
      Or you could just not be a douche, it doesn’t take a uni degree to learn how to say hi to someone in a wheelchair.

      Liked by 1 person

  4. That guy absolutely knew common courtesy. He definately dismissed you as a person. How maddening!!

    My sweet daughter Mercy has Sotos Syndrome. She’s quite tall for being 10. Other kids will rudely stare or watch her. She doesn’t have speech yet. It’s delayed it should come. If she could talk I’d tell her to say something. But she’s smarter than me! :o) If the look at her- she looks right back! If they stare she zooms in on them and stares at them! I love it! LOL! They are intimidated because she is not intimidated. I hope they’ll think twice about staring at other kids! I always tell her “you go girl! stand your ground! you are beautiful!” Why should she think its her that has something wrong!

    (((HUGS))) I’m sure your Dad’s heart was hurt too. The clerks rudeness affects us all.

    Like

    1. I love this! Good on Mercy for being proud of herself and not afraid of others’ judgement. That is a very rare quality in adults let alone children. I hope she continues to be proud and secure as she grows up!

      Like

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