This is probably the hardest thing I have had to write so far. It is also something I desperately need and want to do. When I was asked to write this I felt conflicted. Would it be enough? Would I say the ‘right’ things? Would it do justice to the person it is written for, my first and most influential mentor? This is the sincerest of thank you’s but also an apology for not staying in touch, and not really appreciating what I was given so freely. Now that time is limited I feel I do not have enough to say, and I regret the years where we were connected only peripherally.
Being asked to write this piece made me think of the many, many thousands of other people who would want to write something similar. I cannot begin to speak for even a few of those people. This is my limited tribute which cannot be enough, but it is what I have to give. It is what I see as an inadequate but sincere gift, my final act of service to someone who turned my world upside down.
This is my story with Polly, who I knew as Donna Williams, who changed my life.
In 2004 I was living in public housing. My main source of income was the disability pension. I was aspirational and wanted a different life, studying at university so I might apply for graduate jobs. I was asked to participate in a course for autistic people that would enable us to do public speaking.
I hadn’t met big groups of autistic people before and was a little apprehensive — what if I realised through meeting others with my diagnosis that my diagnosis was ‘wrong’? In fact, meeting all these people who shared my ‘label’ was liberating, an affirmation of my ‘autieness’ which had been called into question in the past. One of the participants in the course struck me as someone I would like to know better. She was high energy, like me, and evidently had a huge knowledge about all things autism. I knew nothing about the autism community at that time, so didn’t realise the woman who I was talking to was, in fact, very well known throughout the world — the author of essentially the first autistic autobiography, a speaker and artist and musician. I just saw a thin woman with curly hair who exuded energy. “What do you like to do with your time Donna?” I asked. She said “I am an author” and gave me a flyer on purple paper with a publisher’s logo, listing the nine books she had written at that point in time. I felt guilty to not know of such an evidently influential person in the autism community. I wondered if Donna would be bothered by me not having known of her before: she wasn’t. We talked during the course and over weeks and months got to know each other better.
Donna invited me to her home, which was heaven as far as I was concerned. I learned the word ‘stim’ and put that into practical usage with Donna’s huge collection of sparkly things. Donna was the most spirited, passionate and engaged person I knew. Her house seemed like something of a reflection of her inner world, and going there became one of my favourite things. Donna had vast energy. She wrote screenplays, made art, wrote books and poetry, did consultancy work and spoke at events. She became my autism world teacher. Until I met Donna, autism had always been seen as a negative, but Donna lived and breathed Autistic pride.
I learned of my identity at Donna’s home. Sometimes other divergent people would be there and we would talk about life, the universe and autism. I found my community, my tribe, right there amongst the art and the engaging conversation. I had been almost ashamed of my autism for so long, but here was a leader in the community demonstrating that the autistic ‘different’ was most certainly not ‘less’.
Donna was completely and unashamedly herself. She had none of the embarrassment I felt at my actions when I looked ‘Autie’. She had one of those singing fish things you mount on the wall. I was studying visual art at the time and loved this for its kitsch value, but Donna thought it was the best thing without the layer of any academic snobbery — it was just a really fun thing which gave her joy — I learned so much from that.
Cynical criticism does not make happy people. Enjoy what life has to offer and don’t worry if other people think it is foolish. Donna taught me to value who I was, complete with the silly bits and oddities.
I don’t remember exactly when, but Donna suggested that I write my life story. Others had suggested I do this too but I wasn’t sure. What clinched it was when Donna told me why I might write the book. Donna said that in parent support groups, there would often be a parent sitting in the corner not speaking during the meeting. That parent’s autistic child had been involved in the criminal justice system or had made other very poor life choices. Donna told me writing my life story would support that metaphorical parent. Of course my own parents had been in that position so I wrote the book. Donna was an amazing literary mentor. To illustrate this I want you to stop for a bit, and picture this scenario:
One of the most accomplished and influential autistic people in the world offered her time to support an unknown person — who had never written anything much other than university essays — to write her story. She was available and offered support at all hours of the day and night, including where the unknown writer called at 11 pm one evening, worried that she was in the middle of the most disturbing chapter and didn’t want to be stuck there.
“Keep writing it” was the response, and I did, finishing the chapter at 3am, having moved through and beyond the difficult time in my mind. When the manuscript was complete, Donna helped me edit all 72,000 words of it and then emailed it to her publisher, attaching a foreword she had written. The dedication in the book is ‘To Donna for making it possible’. That is not just a nice sentiment; it is entirely true. Without Donna my first book would not have been possible. Other things made possible were my identity as an autistic woman, my advocacy career, indirectly my public service job and all that entailed but, most importantly, my notion of myself in relation to the world. I am proud and happy to be my autistic self. I love my difference and there is no ableism in my self-perception any more. I can thank Donna for a large amount of that.
So my thank you to Donna is not a shallow thing. It is possibly the most heartfelt and sincere thank you I will ever say. While we have not kept up other than through social media in the past few years, I shall always carry Donna — Polly — with me. Her creative brilliance and strength of character, her support and empathy for autistic people, and the immense gifts she gave will occupy a deep space within me for the rest of my time.
To read about Polly Samuel/Donna Williams and her work, please visit: https://www.donnawilliams.net/
About Jeanette Purkis
Jeanette Purkis is an autistic author, public speaker and autism advocate who also has a diagnosis of bipolar disorder. She has worked full-time in the Australian Public Service since 2007 and has a Masters degree in Visual Arts. She is the author of three books on elements of autism and hosts an internet radio show. Jeanette has presented at TEDx Canberra in 2013 and at many autism events and conferences, including alongside Temple Grandin in 2015. Jeanette has been facilitating a support group for women on the autism spectrum in Canberra since 2011. Jeanette was the 2016 ACT Volunteer of the Year and a finalist in the 2017 ACT Woman of he Year awards. She lives in Canberra, Australia.