In Praise of "And"

My mother is dying.  She's dying the long death of being 90 and having been the recipient of many of the interventions that our modern medical-industrial complex afford us. She (or rather, her doctors) outfoxed lung cancer in 1983. Last month mom and the medical folks cheated death again when the hospital where she'd been admitted found a way to treat her antibiotic-resistant pneumonia. She's back home, on oxygen, continuing her long trajectory toward the inevitable transition to death.

Meanwhile, our girl is blossoming into young adulthood – young womanhood – of the non-neurotypical persuasion.

On spring break she went shopping for a prom dress. She's determined to go and has been practicing her dance moves. She's been accepted to four of the six colleges she applied for, and offered scholarhips at each of them. It's easy to think of this as success — it sure looks like it.

Like so many high school seniors, NT and not, she is in the throes of trying to divine which offer to take, or whether to take a gap/bridge year to grow a bit more in her social and emotional dimensions, to breathe a little after the long uphill march that was K-12, to relax into the fullness of life before taking on the next challenge of navigating college.

And yet she is still autistic — or rather she has a great many of the characteristics that our culture associates with a label we call autism. We believe that she will always be, by our culture's practices of naming, autistic.  She still has all of the challenges that made K-12 so difficult, and that will most likely continue to affect her in her post-secondary life, be it a gap year, or college, or work beyond these.

So I am also establishing her now, unequivocally, as a person with a disability. That means applying, at last, for SSI. Establishing Medicaid for her. And inviting a whole new array of acronyms into our vocabulary. Where once there was the alphabet soup of PDD-NOS, ASD, OCD, ODD, ABA, and RDI, now there is OPWDD and ACCES-VR, and certainly more to come.

And where we had always looked almost exclusively at her potential and workarounds and accommodations, now we are conceding that there are undeniable and persistent limitations for our girl.

Her affect is flat. It is hard for her to do the smiling required by neurotypicals, and that is especially expected of females. She is often, quite frankly, what most observers would call rude. She longs to be fashionable, but wears a self-selected, sensory-friendly uniform of stretchy yoga pants and ultra-soft t-shirts. Hearing in any setting remains challenging, and in noisy settings it is deeply frustrating. Sudden loud noises still evoke a startle response. Her amygdala still works overtime despite the psycho-pharmology Western medicine has to offer.

So while we are celebrating her enormous accomplishments we are ready to concede that there are many things that are not likely to change, that are not likely to get easier for her, and that are, in all probability, not going away.

When I wrote here about the challenges of applying for SSI awhile back, I heard from some of my most beloved readers dismay that I would be doing this when she was such a success story.  And when I posted on my Facebook account about our girl's college acceptances, I had hundreds of messages of congratulations.  It may be the most popular FB post I'd ever written.

And so the question emerged: Why would anyone need SSI when they're a "success" story?

And that's the problem with narratives: most language pushes us out of the messy ambiguity that is life among the living into tidy categories of the fixed, of the orderly, of the conclusion. Our stories can push us to make ourselves and others into tales of this or that: of  success/failure, of neurodiversity advocate or curebie, of autistic or NT, and so on.  If we are this (succeeding in school with substantial supports) how can we possibly be that (in need of SSI and of other accommodations)?

So I find myself advocating for "and" — that single conjunction in English that makes space for it all — for this and for that. For the fullness of being rather than the sharp relief of this or that.

Paradoxically this praise of "and" also requires an embrace of this or that. Otherwise we'd be leaving out one of the most important tools we have: differentiation. Like most people I know, I relish categories and certainty. I sometimes like labels and the shorthand of diagnoses. They can be useful in so many ways.

But my girl's trajectory has taught me one thing for sure: one can never really know what something is, only how something looks and feels right now, in its own singular context, in this own particular moment which slips away into another moment faster than you can blink. The comfort of this or that, for all its usefulness, can be a trap that forestalls possibility. This and that has been the gateway to our girl's successes and to her failures, to her possibilities and to her limitations.

But it doesn't look like
she's dying, does it?

And on the other side of the continent, back out in California, my mother is dying the slow death of dementia. And I guess you know what I'm going to say now: that's she's also living the slow death of dementia.

This version of living is not the life of independence and freedom and privacy that we so love in North American culture. It's not our culture's vision of the good life (or even of the good death). It's a life that has pronounced and visible limits: the tether of the tube to the oxygen tank, the presence of caregivers in what was once her own private domain of home, a routine of medications to slow the progression of brain degeneration and calm her anxiety about the rapid diminution of her functioning.

The trouble for me, and for my family — and especially for my mother and my daughter as they are leaving and blossoming, each in their own ways — is this peculiar North American idea of success. Fantasies of independence, capacity, and individual freedom as these very measures of success damn our lived and shared experience; devalue our communities, connections, and interdependence; and thus displace so much of our full, robust, challenging, and rewarding lives.

The spaces of "and" are not easy to find and occupy, but I look for them wherever and whenever I can. I hope you'll continue to join me there, and here, at Autism's Edges as we move along through time and the stories we tell about theses times.