by Michael John Carley
When Australian spectrumite author, Donna Williams, passed after a long ride with breast cancer, her death in the U.S. went noticeably…unnoticed. Despite the internet’s capacity to sever distance, our collective loss on April 22, 2017 occurred like the far away event it geographically was. The news didn’t “hit” us. Instead, it trickled, relayed like a sidebar…some autism folks weren’t even aware she’d been sick. And when I spoke in Sydney—her native country—this past September, her passing wasn’t discussed by anyone…myself included.
Donna, for those who don’t know, was the author of landmark autism memoirs, starting with 1992’s “Nobody Nowhere.” Though her books did well, and the movie rights to her life were sold (reportedly, to actress Julia Roberts), she never achieved the fame or speaking notoriety of others. But Donna seemed ok with that. And I think this perceived comfort with who she was (as opposed to who she wasn’t), only intensified as the disease wore on her. She had learned—perhaps painfully—that she could not control outside circumstances, like you or I (or the dumb opinions we might have of her), or cancer. But what she could try and control was the narrative about her. If you were interested enough, then she wanted you to understand where she was by telling you the full, unedited story; however much the storytelling resonated as overkill, and however much it offended your pious distaste for self-centeredness. That was the way it had to be with Donna; as long ago, those in charge of her care had made too many mistakes regarding who she was.
And in the many vblogs about her cancer —as she charted both her physical demise, and her increased acceptance of death—she got the chance to die her way. Her acceptance felt real. Her humor wasn’t forced. Even if only her husband saw the full truth, we got the story (through YouTube vids and FaceBook posts) that she wanted us to have. Donna was making sure that there would be no opportunity for misinterpretation, or misunderstanding.
Non-spectrum people often have a hard time understanding that when many of us can’t figure you (neurotypicals) out, that if we’re smart, we’ll stop. We’ll stop trying to figure you out. And we will then turn that same energy and attention into a safer exploration, or a better use of our time—a deeper exploration of ourselves, and of the self. Though we are all raised to look down upon ego, the self-study of our unique wiring is fascinating for us, and it saves us the pain of continuing to try to do that which we are simply not very good at (understanding you)…even if such reciprocated attention is what you want or demand. Donna was a prime example of this who went further by aggressively defending her right to conduct such an examination. And as a result she was often a target for disdain.
Yet she threw that back too. To try and pigeon-hole her (even if you were right) was to guarantee a rebuke. She was the epitome of “Ask, and ye shall receive. Assume, and ye shall be dismissed,” no matter how human our instinct to assume will always be.
But in her later years (in a wonderful interview with Alyson Bradley, that I’ve borrowed liberally from) she reflected:
“…realizing how my co-morbids are just damned hard for me and confusing to others has helped me chill out about their frustration…in real-time processing I had no idea other people were being so effected by my chaos. I do feel I unreasonably expected people to work from my ‘normality’ without having to explain it to them or help them adapt.”
The lesson that Tony Atwood taught us long ago is that being self-centered is not the same as being selfish—or even arrogant. And to other spectrumfolk Donna was incredibly giving. She held an annual dinner at a favorite Thai restaurant for local spectrumites; she provided an alternative role model for young, spectrum women who couldn’t identify with Temple Grandin, with Amanda Baggs, or with Liane Holliday Willey; and she was certainly more than supportive of me when I first came into this field (as well as thereafter).
Donna was also quite worthy of anyone’s study.
To me, she was the co-morbid queen; the pot of diagnostic gumbo who, depending on the time in her life, could describe or diagnose the sidekicks of her autism to be Aphasia, Oral Dyspraxia, Anhedonia, Exposure Anxiety, Alexithymia, Identity Disorder, Natural (as opposed to “unnatural”?) Taoism...etc. before settling on Dissociative Identity Disorder. I had to look some of these up.
She was also an environmental study—a childhood victim of abuse who’d been shuttled between caregivers as a child, who’d been homeless…etc. She therefore wasn’t destined for simplistic summations. I don’t think she even wanted her professional reputation to be restricted to autism. I think she wanted to be known somewhat equally as an artist, as a musician, as a philosopher, as a vitamin expert, as a teacher…
But she could write, and she had a lot to say. Donna was probably the smartest person at every dinner party, and yet this is rarely as glamorous, or as advantageous, as most people think. Unless you enjoy being smug, I imagine it can be very lonely, and frustrating.
I think she felt the healthiest when she was being silly.
Because of the timing of her books, she was often compared to Temple. Both women, after all, came to prominence at around the same time, and both would go out of their way to help you…even if both were rarely that interested in you.
But outside those qualities the two couldn’t have been more different. Whereas Temple will rarely discuss sex or politics, nothing was off limits to Donna. Whereas Temple relied on simplistic messaging (or “common sense”), Donna didn’t just embrace complexities, she often invented them—even at the risk of alienating others—along that hard, long road towards reinventing herself.
“Donna Williams,” for instance, was not her given name. She morphed through a couple of variations of first and last names (based mostly on issues with her parents) before legally changing it to “Polly Samuel” in 2015).
In her personal life she would enter into male and female relationships, calling herself “bisexual but a serial monogamist.” And to describe her loves, she used terms like “accidental marriage,” or “domestic prostitution.”
But she seemed to have met the love of her life in Chris (Samuel), who bore the pain of relaying the sad news to us, and who still lovingly acts as executor of her memory. With Chris she became less defensive, more trusting; and when the bad news came to them (that she would not survive this), I suspect his love had a tremendous influence on the humor, wisdom, and intimidating contentment that exists in her death diaries.
I had her in mind when I started this column in 2014, as she and I had been such simpatico soul mates in one particular area—professional peers telling people to be scared all the time. She and I agreed that not only had that not been our strategies for our differing successes; we also believed that the scare tactics were a crappy way to make money off already-scared people, and more importantly, that being scared was just a crappy way to live.
I had hoped back then that she would write me, and tell me that she loved the name of this column. But unbeknownst to me at the time, she had bigger things to deal with.
Recording the process of one’s own death may not be revolutionary anymore, but if done with courage and clarity, then it isn’t any less constructive or inspiring. And the more well-told stories that get told, the better and more refined the future stories become. It is just like how in philosophy we never answer the questions, but are instead led to new and deeper questions.
a) I thought Donna Williams was always brewing with thought,
b) I thought she had guts, and
c) I thought she was fun.
She may have even been somewhat prophetic as to what would befall her, as she shared in a 2009 play of hers called, “Footsteps of a Nobody:”
“In the theme park of life we all get a ticket. There’s no refunds, no regrets, no mistakes, no exchange.”
Donna herself, when she wrote “Nobody Nowhere,” did not actually expect it to become published. She wrote it…
“…as a confessional before killing myself, a last ditch hope that if there was hope for an equal life as myself, then I might hold on.”
She did hold on. Her next book was called, “Somebody Somewhere.”
“Turned out there was that hope, but I found it in helping others.”
Michael John Carley is the Founder of GRASP, a School Consultant, and the author of “Asperger’s From the Inside-Out” (Penguin/Perigee 2008), “Unemployed on the Autism Spectrum,” (Jessica Kingsley Publishers 2016), and the upcoming “’The Book of Happy, Positive, and Confident Sex for Adults on the Autism Spectrum…and Beyond!” In addition to this, he also writes the more local Huffington Post column, “Autism Without Fear—Green Bay Edition.” In 2000, he and his son were diagnosed with Asperger’s Syndrome, and re-evaluated in 2014 under DSM-5, Carley was diagnosed with Autism Spectrum Disorder. For more information on Michael John, you can go to www.michaeljohncarley.com. To subscribe to his columns and newsletter, please click here, fill out the contact form, and check off the box at the bottom that reads, “Yes. Please include me on the event mailing list.”