Tag Archives: autism

The introvert vs. the anti-vaxxer: I wimped out

I was recently at an event — the type where you’re supposed to mingle holding a drink and make small but significant conversation with total strangers.  In other words, hell.  I ended up caught in a conversation with a woman whose adult son is Autistic, and who wanted to lecture me on how it was caused by vaccines, mercury in fillings, and fluoridation in the water.  (The conversation happened last week, not in 1965.)  She “warned” that soon 1 in 2 boys would have autism.  She said her son was “her part-time job.”  I asked (assumed, actually; that’s how far inside my own head I generally dwell) about involvement in groups of parents of adults with disabilities; her husband chimed in that these groups were “just” interested in “access” — the latter term enunciated as if “interest in access” was as absurd as “interest in pro wrestling” or “interest in wearing white after Labor Day.”

As an introvert and a klutz, I could not figure out the cocktail-party-level response to this.  So I put down my beer (half-finished!  desperate times!) and left. I have this question for you extroverts and people with social skills but also a righteous civil rights message:  what do you do in shallow social situations when someone says something deeply misguided or offensive?  I’ve blogged about avoiding entirely situations in which people — especially people you don’t know well but thought you respected — might say something buttheaded about disability or civil rights.  But what do you do when you’re stuck?  You’ve taken the highly questionable step of actually putting yourself in the position of making small talk with strangers, and the conversation takes a distinctly buttheaded turn.

Saw this on Facebook today; wish I could have responded as cleverly.

anti vax refutation

Image: the graphic consists of five text boxes, arranged with one at the top, and then two rows of two below. The top text box contains the meme being ridiculed. It shows a syringe and states “If you mixed Mercury, Aluminum phosphate, Ammonium sulfate, and Formaldehyde with VIRUSES, then got a syringe and INJECTED it into your child . . . you would be ARRESTED and sent to JAIL for child endangerment and abuse. Then WHY is it legal for a doctor to do it? and WHY would you let them? Educate yourself. Re-Think Vaccines.”  The box in the second row on the left has an icon of two cars colliding head on, and reads “If you welded some scrap Aluminum and Steel together, added some Tires, Cylinders, Spark plugs and GASOLINE, then took it out and DROVE it on a public road, you would be ARRESTED and sent to JAIL for public endangerment and unsafe vehicle. Then WHY is it legal for Ford & Chevy to do it? and WHY would you let them? Educate yourself. Re-Think Vehicles.”The next box has a wall socket and reads “If you look Copper wiring, connected It to the city power grid, then ran it through the walls of your house and into the bedroom of your child, you would be arrested for child endangerment and fire code violations. Then WHY is it legal for electrician to do it? and WHY would you let them? Educate yourself. Re-Think Electricity.” The box on the bottom left has a fireman’s ax and reads, “If you burst Into the bedroom of a child you didn’t know wielding and Axe and then forcibly took the child out of bed and carried them outside the house, you would be arrested and sent to jail for the assault and kidnapping of a child. Then WHY is it legal for firefighter to do it? and WHY would you let them? Educate yourself. Re-Think Firefighters.” The final box on the lower right has an airplane seating chart and reads, “if you took over a hundred people, packed Them into a pressurized metal tube, then used refined KEROSENE to LAUNCH Them to over 35,000 feet at speeds of over 450 knotsyou would be ARRESTED and sent to JAIL for . . . . I’m not sure, probably a lot of things. Then WHY is it legal for pilots to do it? and WHY would you let them? Educate yourself. Re-Think Aviation.”

Why I love Autistic* women (and you should too). (Guest post!)

[I have been blessed with a guest post by Corbett O’Toole, longtime activist and kickass good writer. ]

My life and disability activism entwined since my early childhood with polio.  I got the good, bad and ugly of the 1950s Poster Child years.**  I got to be the “problem” at my public school (they threw me out after kindergarten because they said my climbing the school stairs would be a ‘liability’), and then an “inspiration” at my Catholic school as the only person with a visible disability (where I climbed 2 flights of stairs everyday).

After I graduated from college, I moved to Berkeley, California with a friend and fell into the Disability Rights Movement.***  We made history (well I just followed along and did what I was told (mostly)).  We got curb cuts on city sidewalks, stopped inaccessible public buses with ADAPT, even shut down HEW director offices in the 1977 Section 504 sit-in.  I saw lots of folks come to Berkeley and then start their own dreams.  It was a time of action (and a whole lot of sex, drugs and rock and roll but that’s another blog).

But by the mid-1980s a lot of disability activism disappeared.  We went mainstream and many folks saw our organizations as service providers not activist centers.  And we started to narrow who was included in “disabled”.  When the first generation of AIDS folks came to our centers, we gave them minimum services (and some places just turned them away).  When the hemophiliac folks started dying from tainted blood, we acted like they were not us and turned away.  Little by little our public face became more about getting public acceptance for specific groups of disabled people (i.e. “us”) and less about disability justice.****

I continued to participate in disability rights work but increasingly I was on the margins – working on queer disabled issues, building bridges with other marginalized crip folks like disabled people of color.  We were not being invited to the official disability tables (not even as token speakers).  Often it felt like the days of serious activism – in your face, on the streets – had passed.

Then I met the Autistic women.  They blew my mind with their honesty, compassion and stunning intellect.  Have you read some of their blogs? I did.  They name injustice.  They call for action.  They help each other out.  They prize kindness. And they are over-the-top smart.

And for their efforts, they are routinely derided, receive hate mail, and are largely ignored (and often shunned) by people in other disability communities.

Here are some of the things I learned from Autistic women (and a few men).  Remember these are folks who are usually excluded from disabled and nondisabled communities; their disability-related needs are ignored; they have no money (or jobs) – yet – they, in my opinion, are leading the way towards disability justice.

SPEAK OUT

Every week there is a news report of an autistic child or adult who was murdered (or nearly murdered) by someone close to them.  In response to the latest one, Alyssa called for a new blog to respond.  Within an hour, a group of Autistics created “Voices for Justice” – a place to fight the public complacency about these murders.

Nearly all the press coverage is ‘explaining’ why the murderer ‘needed’ to kill the disabled person who was a ‘burden’.  There’s been hardly a ripple from the other disability communities – except for the National Council on Disability  – even though this happens with lots of non-autistic disabled folks too.  Here is a great response from Beth Ryan, a parent of an autistic kid.

TAKE CARE OF EACH OTHER

The Autistics I know and follow online acknowledge that there is a lot of diversity among folks so they encourage people to ask for help as they need. They support each other and teach each other successful life survival skills. They also reach out to parents of autistic children.  Elizabeth (Ibby) Grace has a blog just to answer questions from parents.

They created systems to communicate nonverbally.  My favorite is for public spaces like conferences where people use “Interaction badges.” Kassianne explains it best.  Using red, yellow, and green pieces of colored paper we indicate our social availability.  When I am open to social interaction I display my green paper.  If I am feeling less social then I show yellow.  If I am out of juice and need to recharge, I show red.

TELL THE TRUTH

Most of the non-Autistic disabled folks that I know pretend that their disability doesn’t really impact them all that much.  Oh yeah, we complain about our stuff when it’s breaks our patterns – like when a wheelchair breaks – but we rarely talk about what works and doesn’t work everyday for our bodies/minds.

But the Autistic women do talk about this in a much more public way.  Someone might blog about how they can either get work done or clean because they don’t have enough energy for both (I can totally relate to this).  They even created a blog for all the stuff even they don’t like to discuss publicly to help parents of autistic children get some insight, support and strategies.

FIGHTING BACK

They are fighting back against ignorance (“autism = inability to feel empathy”), abuse (electroshocking of young children for “education”) and active annihilation (the murders mentioned above and public “education” campaigns that urge people to “prevent autism before it steals another child”). They challenge the methods and messages of organizations that want to “eliminate autism” (as if it was an scratchy coat) and spread misinformation.

WHY YOU SHOULD TOO

It took me a while to find a bridge into the Autistic world.  Autistic lawyer Shain Neumeier got me started and university professor and Autistic Elizabeth (Ibby) Grace brought me in.  I’m writing this post (THANK YOU AMY) because the kick-ass, fight-back, David-and-Goliath-work these Autistic folks are doing is amazing and needs your support.  They are an incredibly literate bunch and an easy way to find them is through their writings.  It will be well worth your time.  Here’s a taste:

Alyssa Z is a triple major college student (math, engineering and Chinese) who writes Yes, That Too.

Elizabeth (Ibby) Grace is a queer Autistic married mother of two who writes two blogs: Tiny Grace Notes AKA Ask an Autistic and NeuroQueer.

Autism Women’s Network has lots of fabulous writers.

And some great parent blogs:

Brenda Rothman writes Mama Be Good.

Ariane Zurcher writes Emma’s Hope Book.

****************

* I figure that since this is Amy’s blog, I need to follow her protocol and put in as many *footnotes as possible.   I think her record is 5 – I’m hoping to break it.  Back on topic: “Autistic” is the preferred term by many autistic activists.

**  In the 1950s, and for a long time after, children with disabilities were traipsed out like dogs at a Kennel Club show to raise money for organizations run by (and often for) nondisabled people who said they were “helping the handicapped”.  Neither we, nor our families, received any compensation for our ‘performance’.

*** You can read about this history at the Disability Rights and Independent Living Movement Oral Histories.

**** Before you start yelling at me (well, really at Amy since this is her space), I acknowledge that lots of good legislative changes happened because of our ability to be more effective and mainstream.  Lots of college kids got support.  But this blog is about activism and not mainstream stuff.

Whew!

These ads always give me a great sense of relief, because God knows I’d rather my child* be in the company of

Matt Savage

or

grandin

or

Tammet

than these assholes

tommy-hilfiger-ss-2011-by-craig-mcdean-styled-karl-templar

********

* My theoretical child.  I don’t have kids.  But to be clear, I would rather be and/or hang out with people with autism than people in a Hilfiger ad.