December 11, 2012 by whirlyjoy
“It’s not our job to make nice.”
These were wise words I learned from a very experienced parent of a child with autism. Katie was of Big Jane’s generation – in fact, it turns out they were neighbors when their children were young, and Nana remembers how, when the family was over to visit, their son Patrick would climb up on top of the refrigerator instead of hanging out with the other kids. “I don’t remember anyone calling it autism,” she told me. “But we certainly knew he marched to a different drummer.” Katie was a pioneer, an active force in the sea change by which we in the United States shifted from routinely institutionalizing our disabled kids, to giving them the right to stay with their families and be educated alongside their peers in the public schools
I first met Katie at an event held in her honor at Aida’s developmental preschool back in 2003, and didn’t know about this past family connection yet. At the time I was struggling to come to terms with the realities of how the public school system serves (or too frequently fails to serve) its disabled students. My belief in the airy-fairy vision laid out in the 1975 IDEA law (and its later iterations) mandating education for children with disabilities, lasted precisely until my first series of meetings with school district staff.
The consulting teacher who was supposed to partner with me to define Aida’s needs and get her into a school program that would meet them, instead did her utmost to convince me to sign off on my daughter as “primarily” either deaf or autistic – and then address only that disability. This woman, whose given name Eenie quickly twisted into the much more apt Wolverine, would reference her non-specific Ph.D. (Ph.D.-NOS?) in some implausible and unnecessary way at the start of each meeting, and then proceed with her agenda of railroading me into agreeing to services that only met half of Aida’s needs. She earned the undying hatred of the many families she bullied at that time – but she did succeed in teaching me very quickly how an unfunded federal mandate works in the real world.
And then Katie came along and taught me that being a well-presented, well-spoken, completely unwavering bitch is the way to get things done.
I don’t believe I naturally have that much in common with Cruella. It’s true that my friends are tight-lipped with dismay at my basic indifference to pets, but still Dalmatian wouldn’t be my fur coat of choice – at least not puppy Dalmatian.
When Chip and Wini took their family to Disneyland a couple of years ago and asked what they could bring back, I said “something with Cruella”. I don’t doubt they searched faithfully, yet it seems nothing but princesses and fairies were to be found in sunny California. It was a few weeks later in our darker corner of the country that their son gleefully located my mascot – in the absolutely genius, stress-reducing format of a stapler – at Archie McPhee, a store I’d never even heard of until visitors, who were in from Austin and far trendier than I can aspire to, said it was on their list of Seattle must-sees.
Since then Cruella has sat in pride of place at my right hand, reminding me of the love of good friends, the importance of lipstick (never leave the house without it, Big Jane always says, and she wears exactly the same shade of red as is on Cruella’s kisser) – and that my inner bitch is always there, waiting to be let out when needed and staple some obstructive paper shuffler’s ass to the wall.
The term “advocacy” sounds so even-tempered and sort of comfortingly mundane. It has all four syllables almost evenly accented, muted vowels, soft consonants except that middle “c” that you just barely let click in your throat when pronouncing the word… but what advocating is really like at times is that scene with the Black Knight in Monty Python and the Holy Grail, where he keeps shouting defiance as he bleeds from every severed limb. I laughed at the Knight when I first saw the film (during the single long sleepless night that I remember my freshman year of college to be), but now I understand him better – we parents are the ones who will continue beyond all hurt and hopelessness to fight an armored foe, one who often claims the battle is unnecessary in the first place and usually walks away unharmed – while we, whether we win or lose, retire to nurse our many wounds and ready ourselves for the next time.
When Katie had Patrick back in the 1950s, autism was still being blamed on so-called “refrigerator moms”, whose alleged cold withholding of affection was supposed to have caused their children to withdraw into their own world and reject all warmth and interaction. I truly cannot imagine what it would have been like to be grieving for and caring for your child, whom you love beyond all reason and for whom just existing in the world the rest of us occupy easily is an unceasing struggle – and to be accused of causing their condition at the same time… But I certainly understand why Katie chose not to rely on “making nice” to get things done!
Cruella plays another important role, besides reminding me that being nice isn’t my job. I keep her around because the kind of mascot I really want at my side some days is an unfeeling bitch who can help me keep my own emotions at bay. Cruella wouldn’t crumple into a mess of tears from love or compassion, grief or bone-deep fear. She is single-minded and undeterrable from whatever goal she sets herself. “All you need is love” is a sweet sentiment – but sometimes what you really need is just pure brute strength of purpose.
And it doesn’t hurt that she has a wicked sense of style.