I heard from Nupur. She was from Boston USA and had recently I have started online community for children with special needs called ‘Special Children’s Art Work’. Her passion is to give special needs children and their families some place where they can come and submit their creativity. She thought I would be an inspiration for them and asked me for an interview. Here it is:
I lived art long before I created art
colors, textures, sounds,… I was very sensory but the sensory could connect with me, compel me, speak to me, move me
I felt I was eating these things
nourishing my soul
my connections with people were through the sensory
my grandmother was tartan, eucalyptus oil, crotched wool, the sound of folk music
the sensory was like a language, a signature, and part of connection, to others but also to the world
but expressing myself through the sensory, through arts, this was terrifying
because I couldn’t simultaneously process self and other
so to express from myself into the external world was to risk losing track of what is mine
rather like taking one’s organs out and leaving them around the room
what came from me was me, was mine, was personal, and private, and not for others to own, display, share. It felt threatening to commit to expressing art externally, it took trust and a sense of empowerment that I had a right to hide my art, the destroy it
that I could share it on my terms, that it was sacred
I was ok with coloring, then became afraid of using colors and would only organise them
I loved plasticine and clay, but again became afraid of expression, connection,
When I was 11 my father left me paints and I taught myself to paint but hid all the paintings in the roof void.
When I was 10 my aunty took my fabrics and sewed them together, slowly training me hand over hand to sew. When I was 26 I was given paints and did my first paintings ever seen by others. I painted until the paints ran out but couldn’t dare to buy any more, it would feel too committed… to expression, to sharing that expression
When I was 36 I finally sculpted. I got paints again when I was 38 and finally when those ran out I dared to buy my own. A few years later I began selling my work
It is emancipating to have a primal language like art
But one must also be able to dare it
And that takes trust, enormous trust
the foundation of which is knowing others respect the sanctity of selfhood and expression
that they never presume it is easy or a walk in for all and sundry
that they never narcissistically claim the artist or the artists art as their circus performer, their flag to wave
this is why I had no interest in high prices or pursuing competitions or exhibitions (I’ve done only a few)
I love the autonomy of my own online gallery
I love that I get to know the people who buy my art
that I send it to homes where it connects with people, sometimes changes them
and I love that it is affordable to everyday people, to the right people, those who see the soul in it
I don’t fancy my art being bought just because I’m well known, I want my art to go to those it speaks to
If you get a chance to go back to your childhood days, what would you like to change and why?
Everything was what it was
And now it is what it is
we get shit, we make sculptures… hopefully
Do you think you are destined to help humankind via your writing, art, music and inspirational speeches? Do you want to share any story where you have motivated someone via your writing, art or speech?
I am compelled to express, to create, to explore, to explain, to make sense of things
I don’t like to waste anything
So I share these things with the world
if they are useful to them, they will find them and partake
I have no sense of being destined
Merely on my journey, striving to survive on all levels, engaging with the ‘amusement park’ that is life in all its colors
I have no martyr complex
I massage my own ego and don’t need others to do that for me
I don’t do cling and don’t need people to need me
I am glad to have been useful and of service in the world
These too have been rides in the ‘amusement park’ of life
To be of use, of value, of service, has been a wonderful blessing
but with it comes responsibility to have boundaries on that, to never set oneself up to be used, to be the ‘goose that lays the golden eggs’
I like to be ‘ordinary’, ‘usual’, one among many, just another human being.
We are all extraordinary, unusual, unique in some ways
But none of us are this in all ways and those who think they are are smitten with their own illusion.
When you published your debut book Nobody Nowhere: The Extraordinary Autobiography of an Autistic Girl, did you ever think it would be a best seller? Why do you think people love your books? How do you think this event changed your life?
I wrote it because I was suicidal and about to step in front of a train
I wrote it in the hope that by exposing my life to one other human I found feel fully known and therefore not be compelled to avoid, divert, retaliate…
that I would become freed from chronic fight-flight that I had found overwhelming, tiring, and not worth the effort of striving to live. But the child psychiatrist I left it with wouldn’t let me take it back and burn it. Perhaps he knew I’d then kill myself, perhaps he truly believed it was important to the world. He asked to send it to the person who had trained him and she sent it to her publisher and her publisher sent it to a literary agent he knew and the literary agent sent it to five top publishing houses who began to bid on it and at that point I was 10,000 miles away and got a fax asking if I’d agree to its publication.
You can imagine the terror, the self consciousness, the shame, but also the promise of freedom from ever hiding again, which of course was priceless
and as someone who had been ready and able to easily end my life I figured that if the account of that life could be medicine to others, could make their lives easier or more understandable, then who was I, as someone who would have thrown my own life away, to deny them that?
And through this I authored further books, became a public speaker, an autism consultant, a teacher and was empowered to navigate my own life with the resources to get professional help to do so and for that I thanked the world and never regretted what I have shared with that world
Fame, Wealth, Health, Or Peace: Which one is more important to you and why?
Fame is a disability
It is a risk factor for mental illness
It is also a source of power, of having a voice,
and so that should come with an obligation to use that voice with as much humanity and compassion as one can find
Fame is isolating, contorting, alienating… it can make you a product, a thing, the ‘it girl’… it is rife with narcissism if you let it be so.
And fame is opportunity, freedom, safety from homelessness, from sexploitation, and from the streets.
Fame is complete Tao – the yin and the yang, the poison and the medicine.
Fame invites one to be wise or perish on its trash pile
Wealth can be a blessing or a curse. One can have wealth that attracts users, gold diggers, people who will manipulate and play passive-aggressive games guilting you into being their personal ‘goose that lays the golden eggs’… I had several… one attempted to extort money…. and lost… one pressured me into going guarantor and cost me around 30,000 GBP by the end of that adventure… one maneuvered me into my first marriage, announcing his departure the day after the 2nd anniversary when he reminded me he was now entitled to half of everything I owned. So the psychological and emotional harm of being used, manipulated and ripped off for no good cause but the greed of singular sociopaths/narcissists, this was the curse wealth brought me. But wealth also brought me safety from abusers, good food, shelter, a life the other side of homelessness. It brought me health services, including for trauma recovery. It has also allowed me freedoms to work from the heart and not merely for survival. There is never a time I am not aware of how lucky I am to not be poor and I never take it for granted. Equally, I strive to never allow myself to be anyone’s fool or cash cow. I am glad I am only ‘comfortable’. I can see no point in having more wealth than one actually needs and can healthily use to maintain a grounded life as a general member of one’s community. I would not want to be a millionaire because I strive for balance and there is nothing balanced about having too much excess.
Health is like a nest,
prickly and uncomfortable and never able to rest or sleep
or just there, fading into the background, sustaining body, mind, emotions
I live with immune deficiencies, food allergies and intolerance, a collagen disorder called Ehlers Danlos Syndrome which comes with the pain of fibromyalgia, brain fog, autonomic dysfunction, I have central hypoventilation and require a machine to keep me breathing when I sleep because I have lost my respiratory drive, I have survived cancer and chemo. I have lived with PTSD, with DID, with mood, anxiety and compulsive disorders. I have spent my life with the meaning deafness and meaning blindness of agnosias and the brain impacts of Fetal Alcohol Spectrum Disorder. I have spent my life with the product of all these called my autism.
These have made my nest challenging, often distressing, painful, alienating, scary, sometimes overwhelming. But these health issues have also made my nest mine, have shaped my journey, have made me who I am, challenged me to function and thrive in spite of any and all of them and to be more than the sum of the challenges they’ve presented me. For this, I thank them for being my teachers. One day I will die, and all that remains of my health issues – physical, mental, emotional, will all release me, and we will bow graciously to each other as we part.
Peace is illusive
I feel a lot. I am saddened at the inhumanity in the world, our disrespect for the planet, for nature, for animals, for each other, for ourselves.
I am saddened by the grip of culture that distracts people from humanity, logic, practicality, and broader connection with all of life. I am saddened to be awake and aware and alive yet often surrounded by those preferring to zombie themselves on any range of levels. I am saddened to be aware of how short a lived life is, to savour each day no matter how challenging or shitty, and see myself surrounded by people wasting so much of their potential. I strive to accept my imperfections, but I strive to minimise harm, to myself, to others, to the world around me. I remind myself daily to notice all I am grateful for and to never forget that I am no more or less significant than the fish I had for lunch or the ant I didn’t notice myself tread on. I am a cheery soul, more cheery than peaceful. I am restless, but I have enough peace to balance that.
I suppose, as a Taoist, all things are valuable.
It depends on the use you put them to
Any special message for our special children and their parents?
We are all more than condition
Always presume competence
Always look for the personhood
Then listen to the language of behaviour
And respect you are the tune their body is listening to
And ask yourself ‘what tune am I playing’?
These are your lanterns, to guide you in your choices
Take your time
Dare to understand.
I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.