Three weeks ago we did a huge interview with Beverly Nero and Dan Ireland on your autobiography Nobody Nowhere going to film. It’s therefore a great honour to do a formal interview with yourself. Donna thanks so much for granting MA this interview.
No problem. Nice to meet you
Donna, from the discussions I had with Beverly a view week’s back, you have fought through various difficulties in life. People thought you to be deaf, psychotic, disturbed even retarded. You fought through cancer, endured a double mastectomy and still managed to bring a message across to others. How do you manage all of this?
I was diagnosed as psychotic at the age of 2, had primary immune deficiencies since infancy, later came the usual that goes with that, allergies, autoimmune disorders, and, yes, cancer, the diagnosis of a connective tissue disorder, dysautonomia, central apnea... I call it 'fall apart syndrome'. It’s all clay, shit if you like, but to a sculptor of life it’s like clay... take shit, make sculptures. So it doesn't defy life, derail life, it IS part of the fabric of life. It shapes me, but I also learn who I am in defying all of it, I reinforce the sovreignity of my personhood. It gives me enough crap to experience my hero moment, to become the person I'd most want to take to the battle front, the person who would have earned my respect, trust, belief in. Sharing that with the world is part of awareness that life is short, humanising the tough stuff for others, awareness that we are all star stuff, being a citizen of the community.
As a child you obviously went through a lot considering people never understood autism at that time, how did you manage? When did you get to the point of understanding that this was in fact autism and not some kind of psychotic disease?
I didn't have functional speech until I was around 9-11 years old and even then was so dominated by Exposure Anxiety that I couldn't ask anything complex or personal until my late teens and twenties. Something happens to you when you grow up like that, especially if there's nobody to wipe your butt for you. I had one parent probably on the autism spectrum, the other parent I experienced as psychopathic. It was like growing up in a sideshow, a dangerous, wild, colorful sideshow. There was so much survival to deal with. So although I had the need to understand, it wasn't until my 20s that I had enough speech, enough conversational skills and enough capacity to ask personal, emotional questions and that's when I learned that I was diagnosed as psychotic at age 2 and that people had thought I was autistic (which was then an adjective used to describe psychotic children). But learning I was intelligent, I realised that at age 11, that I wasn't disturbed or crazy, that took longer... especially because I WAS traumatised, dissociated, had anxiety and compulsive disorders but was not actually psychotic. That's a hard one to fathom.
And at first, when my autism was finally compassionately explained to me in my 20s, I accepted it as a condition, a developmental disability. But progressively I thought, no, this condition is actually a whole bunch of different things, a 'fruit salad', a 'jumbled jigsaw', which when mixed up enough and overwhelming enough derails usual development and presents as what we know as autistic. Sure, I could be autistic and have curly hair, shortness and be my own flavour of crazy too.
I also realised that everyone has some 'fruit salad' and that I didn't have to be 'normal' to be equal, nor could I presume the world would naturally acknowledge my equality. I realised I would have to advocate for my own version of 'normal', and equality in difference.
How would people know that they are in fact dealing with a child that suffers from autism?
Each child with autism has their own collection of fruit salad... I was faceblind, meaning deaf, saw my world in bits, had a lot of jumbled sensory messages, was echolalic and had involuntary avoidance, diversion and retaliation responses – quite 'feral', 'bizarre', 'odd' – and the health issues made me rather out of it. The inability to cope meant I spent a lot of time in self-directed chatter, caught up with my reflection, sensory 'buzzing', dissociated from body, mind, emotions. But another autistic child may have obsessional interests, be unable to read facial expression, body language, intonation and come across more as literal, obsessive, a little professor. Another may give up all their skills and development out of fear of losing a monopoly over the carer and fight to stay at the developmental level of a toddler. Another may be capable but reclusive, silent and struggle to emotionally connect to others. Another may have little control over their speech or behaviour but through typed communication demonstrate a high level of ability, intelligence and empathy. As an adult I became an autism consultant and worked with over a 1000 kids with autism so I can tell you the reality is they are very different fruit salads and very different personalities and for every stereotype they fit there will be a stereotype they shatter.
Where could people reach out for assistance when they think they or their children suffer from autism?
The question of whether kids with autism suffer is worth addressing... sometimes its the family that suffers more than the child with autism, or the siblings, sometimes the child with autism is the least challenging child in the family! Some kids with autism will have overwhelming 'fruit salad' that makes up their autism and they will suffer from some parts of that but indulge, enjoy, even thrive because of other parts of their autism. So it’s very diverse which is one of the things I hope people get from the different characters in the film. As for where can families get help... well that would be from their local autism chapter, from online groups, from talking to a range of adults on the spectrum who may have experienced some of what their children are dealing with.
Your autobiography Nobody Nowhere has been getting great reviews, it’s said by many to be an eye opener, was this always the intention? To write about it, get the word out there or was it something you did for yourself? A way you managed to deal with your own problem?
It was an international bestseller and 15 weeks on the New York Times Bestseller List when it came out, so it was a ground-breaking, evocative and shocking book. I wrote it as a means of giving myself permission to jump in front of a train on the London Underground. An inner voice said I didn't have a right to throw my life away until I let at least one human being really know me. It was like I couldn't leave this world until I ticked that last box. I had such a degree of involuntary avoidance, diversion, retaliation responses that I couldn't dare let anyone know me with any depth in any on-going way... I felt invaded if the external world got entangled with my own world it triggered rampant fight-flight responses... so the only way I could do it was to purge my life on paper. I wrote the book in 3 weeks, typing night and day, barely eating, washing, and sleeping. Then I thrust it at a child psychiatrist to have them tell me 'what kind of mad I am'. My belief was he would tell me I was mad, hopelessly so, and then I could shred the manuscript, burn it and rather smugly go ahead and do what I wanted to do which was to exit the body I felt entrapped me, made me vulnerable by virtue of its very existence, I wanted to erase it, to steal my spirit away from the body through killing the body, to set it free, become a ghost and leave it discarded. But the reaction of that psychiatrist utterly floored me. He read it and told me there was nothing like it in the world, that it would change the way autism was seen for all others with autism. I felt, well, I was about to thrown my life away, how dare I steal from others this opened door, this chance at their own autism being understood. I decided to 'sacrifice' the manuscript, I left it behind in the UK and went back to Australia. The psychiatrist passed it on in my absence and several passes later I was shocked to get a fax from a UK literary agent who now had it, had four publishers bidding for it, and was desperate for me to agree to its publication. I was talked into conceding to that. Progressively it took a lot of work to come to terms with going from someone so afraid of being known I was ready to give up on life to someone who became a public speaker, autism consultant and author, in the end, of 9 books in the field of autism.
Your helpfulness towards others led you to Beverly Nero, what was your first impression when you decided to put your book onto film?
The book was near impossible for another writer to put into film because the language, the way of thinking, of perceiving was so utterly foreign to non-autistic reality. It really needed an autistic writer, but more than autism it needed Donnaism... I am strikingly idiosyncratic, what people refer to as 'what a character'... and ultimately it really takes that same person to write the script in that same voice. I had written a few scenes some time before so I knew I could write powerful scenes... I just didn't know I could write a powerful script or that the script could be as gobsmacking, as magical as the book. I think what was so wonderful was that being echolalic and echopractic (mirroring voice and actions of others) ironically made me an ideal script writer... I could easily convey the characters from the book as they were... even when I took characters and merged them into one, they were taken as being 'real people' which I think is when I knew I really could write film.
Beverly mentioned that you write your own screenplay for the film. Was it something you had to do some research on or did it come naturally – writing the screenplay?
Just as I wrote the book in 3 weeks, I wrote the first draft of the screenplay in around 4 weeks. At that time I had no idea other people have to think and write... for me it was more like... dissociate, stare into space and let the writing write itself out from your fingers. That's the way I sculpt, paint, write... its more like a dream state... like I'm typing directly out of a dream state, hypnogogic really. So, naturally? Sure, my version of natural.
How involved are you in casting the actors for the film? Beverly did mention that your character in itself was a difficult and they require an actress with authenticity
Bev and I have spent years talking casting. I navigate by sensing... I map people like a cat does. Maybe because I grew up meaning deaf, face blind, seeing my world in bits. But it means I can encounter an actor or actress for 30 seconds and I've mapped them... their tone, their 'music of beingness'... it’s like a 'tune', a 'signature' unique to each person, but people's 'music' can resonate, be harmonious, or be dissonant. So I have a good sense of who fits, their range, their patterns, their feel. Of course I also look at them logically, their range, their achievements, and their level of life experience too. I returned to school in my 20s and became a sociologist, later a teacher. I think I bring those skills to casting input too.
Dan Ireland is a well-known director, how was it to work so close with him?
Dan is gorgeous... we hit it off like old time pals... he's fun and funny but he knuckles down, he dares to challenge, but he's an open channel too, he listens, he's timely, a doer. I think 'Donna time' blew him away a bit... I don't think he's ever worked with anyone who turns a script around as quickly as me. It was a great synergy working with Dan. He really got not just Donna but the plethora of characters in the film. He savoured them like sweets in a candy store. Our enthusiasm bounced off each each other and a lot of the time we were on fire!
Upon me asking Dan what he would take away from turning your autobiography to film he gave us the great reply of:
“If I could take anything with me on working on “Nobody Nowhere,” it would be the bravery, the fearlessness, the joy, the selflessness, and the innocence that got Donna Williams through her incredible journey. This is the story of an unsung heroine, and even though I can’t sing, I sure as hell am going to give it everything I’ve got.”
This is quite an emotional statement, something that shows he looks up at you in many ways. What do you take away from all of this? From getting published, going over to film, working with people like Beverly, Ken Atchity and Dan Ireland?
Oh dear, I'm so simple really on that level... I just liked these folks, Beverly Nero, Norman Stephens, Ken Atchity, Dan Ireland... I found them to be like new flavours in one of life's ice cream stores and I was passing through and enjoying the flavours and out of it formed these creative partnerships, each of them challenging me in new ways, new adventures in the world of film. I think my father, the character 'Jackie Paper' in the film, is quite 'Willie Wonker'... he was in real life... and as his daughter I'm rather 'Willie Wonker' too... so I guess all things are 'normal' in my world, or maybe there is no 'normal' so all things just 'are'... and my life took me into the film world and I took it in my stride and enjoyed the adventure. I'm just glad these folks were autie friendly, diversity friendly, Donnaism friendly. I'm glad they've enjoyed the experience too :-)
Where to from here?
Hmm... well in addition to all I mentioned I also became a singer songwriter with several albums, two songs in an international TV series, have sold my artwork around the world, had two books of poetry published, celebrated 10 years of a great marriage to a wonderful partner, got a great chatty cat we adore, live in a simple house in the hills among parrots and gumtrees on the outskirts of Melbourne and I enjoy the Taoist perspective that sustains me and shapes all I experience. But where to from here is presently dealing with autoimmune disease and knowing what all that means. My health disorders may not allow me to make it to 65, perhaps not even 55, so I've retired at 49 and am presently teaching art. Like the woman who died the same day I was born – Edith Piaf – Je n'regrette rien - I have no regrets about my lot. What more can one want from this life, this world, than that?
Last but not least where can people stay in contact with you or follow your work?
They can come visit Donnaville at my website www.donnawilliams.net where they'll also find links to my blog, my Facebook pages, my Twitter.
Thank you for the interview Nadine and all the best in your own life and future.
Donna, Thanks so much for granting us this opportunity to know more of yourself and your journey. M.A is grateful for everything you have done towards society and the courage you show in everything life throws your way. We can but only hope that more people will be inspired by what you do and who you are.