I always enjoy working with veteran director and theatre maestro Peter Sau, probably the only director in Singapore that I love working with, because he understands my artistic/creative foci and my needs arising from my disabilities.
Here’s a video clip of my performance at the Singapore Writers Festival 2022 presented by ART:DIS, directed by Peter Sau. Small bits of it have been edited out, but it’s mostly intact. Watch it on ART:DIS’ Instagram page. The beautiful soundscape is by the talented Niran Jierapipatanakul, intern at ART:DIS.
For those Deaf/deaf and hard of hearing, or those unable to make out the spoken word because of the echo in the soundtrack, here is the script. For the blind/visually impaired, the sharp sounds you hear intermittently are made by my placards of key words falling to the ground.
“Scheherazade’s Sea” is the main title of my series of autobiographical multisensory, transdisciplinary work. Scheherazade, the charming storyteller in the Arabian Nights fairytale, symbolises for me the Autistic woman in many ways: a young woman, betrayed and abandoned by her own father, handed over to an evil, violent monarch. Alone in a perilous situation, she must improvise, pretend, perform, weave compelling stories and tread carefully between reality and fantasy. Her life depends on it.
A similar conundrum faces the Autistic woman. Women throughout history have been exploited and subjugated. Autism is largely male dominated, Autistic women are a minority within a minority.
How may she survive intact, without parts of her integrity and selfhood being erased or broken? How much of myself is “I” and “me”?
I describe my struggle in this way: “Performing the unnatural as naturally as possible.”
Is it even possible, now, to separate “I” and “me”? Am I really Me? What if “I” is not “Me”? What if there is no more “I” or “Me”?
Perhaps now, after 57 years, there is just “her”? Scheherazade moves onward, inside her vast Sea. Regardless.
(A resonant, dark soundscape begins.)
Who am I?
Performing the unnatural
As naturally as possible.
But am I me?
Or who is
You loved me.
You’d take care of me.
And I believed you,
As you robbed
Of half a lifetime,
Both I and Me –
Made your servant.
You the Mistress,
Fragile, broken body.
Yearning to Become,
Mourning the loss
A person I did not even know.
A soul longing to be free.
Staring into roaring Abyss,
Life and death
Called to me.
In order to live…
I caught a glimpse,
A fleeting vision,
“Run!” I whispered.
“Flee!” cried Me.
And so, I and Me together,
As far and fast
As we possibly could,
As you pursued.
Hell hath no fury…
Heaven hath no peace…
Now, you want to destroy me, because I dared to leave you?
It’s time for the next round of awards. The above video was made by Mediacorp to herald this upcoming event.
I mean it when I say simply that I am at best a reluctant disability advocate. My worldly “achievements” have never been a part of my conscious goals, whether long or short term. There was just one dream that I made huge effort, and ultimately extreme sacrifice, to attain: my Ph.D and the journey towards finding Selfhood, which are intertwined and inseparable. Those years as a Ph.D scholar were the very best years of my life. No regrets at all. The best thing I have done for myself. The subsequent awards, accolades, recognition and media attention were and still are secondary, quite unexpected and, to me, a burden even, which I bear as a consequence of the universe’s generosity towards me. Paying it forward.
My worth is not even remotely associated in any way any social commendation. I said it very clearly in the first chapter of my Ph.D dissertation, my path is an inexorable one, I am merely custodian and facilitator to the artistry that seems to emanate from me, but which I know is actually the result of my connection with the vastness of the universe. It is an entity in itself, with a path of its own. I follow and I allow myself to be a channel for its expressions, to the best of my capabilities. The process – the journey itself – is my reward and honour. I am less interested in the final product or what the system refers to as “outcomes” which I find dreary and at odds with my artistic quest. How does a true artist actually measure “outcomes” in terms of clicks, views, audience numbers, churning and turning statistics? It cheapens the art, and produces mediocrity. The same with measurements for prizes and awards. The structure itself is faulty. Not every winner is a true winner. Some winners are there because of political and social reasons, some because of sheer determination and relentless, repeated attempts, and then the few who truly deserve the recognition. I am Autistic, the social-political mechanisms of the normative world are a puzzle to me, but I accept that I have to live in and try to survive and even thrive in this alienating clime. Yet, in my quest to navigate this minefield, I am not at all competitive. Yes, I do speak out when I see an injustice or moral / ethical aberration – often bluntly, without the nice-nice frills and embellishments that normative society so values and insists on – but in truth, I am no warrior at heart. I merely wish to Be – undisturbed, well supported, and freed to give back to others the blessings I have received.
Thank you, world, for the amazing awards and tributes, I am grateful to have somehow unwittingly stumbled upon them. But all I really wish and yearn for is Clement Space, with Lucy, and facilitation to follow what is organic and intrinsic.
So, if there is one takeaway from this part of my adventure, as a ‘prominent’ disability advocate, it is this: YOU are worth it. Disabled or not. Your worth is within you. And only you can determine this. All else is ancillary.
This comes one year and six months late. So much has happened since, so many adventures. But delay and slow churning is part of how my Autistic brain works – every little detail is taken in and slowly teased apart, and this is why I need a lot of time to ponder the great many threads and trajectories and to ‘grow’ these tendrils in my mind, nurturing them into larger conjoined structures.
I’ve been revisiting some events and work that I’ve done in recent years and thinking about issues of access yet again. One show that marked a very strong and visible stride into opening up the meaning of ‘inclusion’ in practice was “Something About Home“.
“Something About Home” premiered on 11 January 2020. Singapore’s first promenade theatre performed by a cast of all disabled artists. Conceptualised and directed by theatre maestro Peter Sau, the work was commissioned by the National Gallery Singapore.
There are many things I have to unpack about my experience in this work – I even played two different roles – but I’d like to only focus on just one: inclusion. What does ‘access and inclusion’ look like? To be honest, there is not a single framework cast in stone, and most interpret and improvise as they see fit, or as it fits in with their personal, organisational or commercial agendas. This is my own professional and personal opinion and perception of how I’d like access and inclusion to look like, at a very basic level at least. I am still learning, and my views may change as my understanding and experiences develop.
Sensorially, rehearsal and team sessions were excruciating. My senses scream whenever I am locked inside the vortex of human bodies, moving around, talking at once, human smells – some really pretty confronting, including that of ammonia especially after everyone has had really long days – odours emanating from the carpet, echoes and reverberations bouncing here, there, everywhere in a horrific cacophony, and to top it all, I have to muster the inner energy required for my role. Theatre is a jumble of bodies, I get that, which is the reason I never aspired to become an actress in a professional sense. I’m acting enough, as it is, being Autistic and female, my own favourite quote I coined, “performing the unnatural as naturally as possible.” Yet, when it all comes together, it is immensely satisfying.
What kept me going throughout the intensely challenging rehearsals was the director’s dedication, going as far as he possibly could go to practise access and inclusion, and a keen, meticulous eye for detail. The entire team were united under this strong ethic, and of course, his skilful leadership. To be frank, I’m not really a rebel for the sake of rebellion. I am actually extremely compliant, but only if the leader can show me good reason for my compliance. I’m lucky to have worked with a few such leaders, and Peter has now been added to this list of honour.
What does access and inclusion look like to me, a person with multiple disabilities, then?
Most entities – especially enterprises that need to meet the bottom line financially – are focused on how to pay the artists the least possible for the best possible result. I have done work for some for a pittance or even nothing, because I liked what they were doing for the community at large, fully aware of this bottom line, and I have rejected some others that I felt crossed the line into exploitation and bullying. It is understandable, of course, oppression and capitalisation is really how most industries operate, and the arts industry is no different. However, working with Peter Sau in Something About Home was different. I discovered that we share a similar work ethic where it comes to others we work with and leadership. Professionalism. Transparency. Honesty. And making all effort to offer the highest possible remuneration for the highest possible result. Of course, we demand high quality work, and we also do our best to budget for commensurate payment. This is, to me, the fundamental spirit of access and inclusion when working with disabled artists. Every artist is paid. If the artist does not deliver then the artist does get the role or position. Simple. Professionalism is not charity.
Well, if you’re curious now about my fee, since I am the only artist in the cast with international experience. Well, I was not paid more than the others even though I played two separate roles. I was paid the same as every performer, but that was my own decision, when Peter discussed this issue with me. I chose, it was my gesture of solidarity and support for a common goal, a common ethic, because I trust the director and I believed in the work we were embarking on as a team.
To the enterprises that I have turned down, to the ones that I have given quite a sharp piece of my mind about decent payment as a mark of respect, I meant it. I have also said very often that the choice should be mine alone, whether to forfeit payment, to give back some of my fee to a good cause etc., or not. Non-payment, pitiful ‘honorariums’ and worthless ‘exposure’ should never be a presumption on the part of the enterprise or whoever invites me to work with or for them. Payment for work done is a universal principle, but ever more important when wheeling and dealing in the Arts and Disabilities. Do arts practitioners in this field even know the facts of life for any disabled person? That it costs more to simply stay alive at all?
Think about visible costs like wheelchairs, transportation, equipment and aids, assistance animals etc. Then there are hidden costs like medical bills from visits to the doctors and specialists – yes how often does a ‘normal’ healthy person have to see a specialist? Well, some of us with medical disabilities are in and out of specialist clinics on a regular basis. Then there are other add on costs like medication – again, some of us need specific and costly drug interventions just so we can function even at the most fundamental level. Healthcare is not cheap in Singapore. How about special diets and allergies? Throw that in the mix too. And finally, the most overlooked, ignored and misunderstood of all, sensory accommodations. These are complex and subtle, too often overloaded, suppressed and repressed. The costs are high, if sensory needs are to be supported.
Being disabled is extremely expensive, though the actual costs vary according to the individual and the type of disability. That is why I fight for decent, respectful remuneration, not only for myself, but for all others like me, who are unable to speak up loud and proud on this subject. The ones who have to agree to exploitation because they simply cannot afford to speak up and bear the ugly societal consequences of not getting any payment or job at all, miserable or dire as they may be. Something is better than nothing. Yes, I’ve been at those crossroads too, but I’m fortunate enough to have had ample support that helped me survive the times I’ve turned tokenism and exploitation down plus daring to lecture them in my by-now-infamous inimitable way. This was put hilariously in a neat little nutshell by a well-known non-autistic public figure and vigorous campaigner for autism and autistic persons.
“That Dr. Dawn, she just says whatever is in her mind and the whole world gets to hear it, no filters at all!”
Yes, I admit, that is me. I’m not ashamed of it, by the way, so I did chuckle a bit when I heard through the grapevine that this was being said about me, in Autism circles, of all things. Don’t they know it’s a proud intrinsic Autistic trait? How many autistic people / disabled persons are in privileged positions such that they can and do call people to task and expose the profiteering and bullying that is going on in the ‘charitable’ or ‘social enterprise’ sector?
Access and inclusion, to me, starts with giving disabled persons access to equity, respect and justice, and including disabled persons in ways that empower equity, respect and justice. Disabled artists have the right to access proper training, mentoring and opportunities to grow, we also need to be paid accordingly. What is most important to access and inclusion is not the fanciful waffling and teary-eyed videos with nice music and voice overs about how wonderful society is to include the disabled, nor is it the awkward ‘celebration’ of ‘achievements’ of disabled people having ‘overcome’ disability to become someone worthy of society’s admiration. Instead, it is what is crucial to our survival: fair payment.
Remember, I reiterate, we have higher bills to pay just to stay alive, but yet we are paid far less than everyone else, if at all. We merely want to be paid decently and fairly. Disabled people are so used to injustice that when we are given due justice, we greatly appreciate it. We are even encouraged by it, that perhaps we could do better the next time around, since we are valued enough.
A crucially important approach taken by the director, Peter Sau, is to factor in access costs from the very beginning, detailed and well planned, according to each individual’s needs. Not as an afterthought. I have had more than my share of encounters with entities who have invited me to speak at their ‘inclusion’ events but offered neither fair payment nor access costs. When asked, they have the gall to tell me that they never factored any of this into their budget. “No budget”. No budget for fair access and true inclusion? No budget for the disabled? What is your ‘disability event’ for then? These are questions I have in mind when scrutinising invitations to collaborate. One of the most insulting conversations I have had was with people who offered me – as a last option – transport money for me and my dog – and then turned around and lectured me about how ‘senior’ artists should give freely to aspiring young students to inspire them to become artists. What a twisted preposterous line of reasoning. Especially where it comes to disabled ‘senior’ artists. First, how ‘inspired’ do you think young emerging artists or students hoping to enter the arts world would be when they find out that ‘senior’ artists – disabled ‘senior’ artists at that – are expected to work for free?
Returning home to Singapore has been full of interesting adventures to be sure.
On the other hand, my experience with this production, Something About Home, has been all positive, even the sensory challenges I faced and my own mistaken lack of self-advocacy for my personal access needs, because this experience provided me with more questions to ponder and ideas to study. For example, I began to think about how I may improve the space and methodology to better suit my own functioning needs and that of others, especially in the area of the unseen senses. From here, emerged the access and inclusivity strategy that I experimented with in my own work, Scheherazade’s Sea: continuing journey, 2021.
Lastly, here is the Director’s Interview made by the National Gallery Singapore. It was Peter’s idea to include us in this interview. What better witness of access and inclusion than bringing in members of the team to speak as respected equals? This director has grasped the meaning well. This is the kind of ‘exposure’ disabled artists need and appreciate. Not the exploitation freebies and candy floss. I hope you enjoy the short video as much as we have enjoyed the entire process.
That this took place in my homeland is of great significance to me. It’s given me hope. There is indeed something about home and inclusion that we need to improve upon and at the same time much to celebrate about.
Thank you, Peter Sau, and the amazing National Gallery Singapore, for this opportunity to experience true access and inclusion!
I do apologise for not keeping up with this website. I think I need to ask for help here. But I’ll do things cautious autistic style. In the meantime, here is the latest article to emerge on yours truly.
Thank you, True Colors Festival, for making this interview so enjoyable for me, and it’s so encouraging to see my country finally beginning to embrace neurodiversity respectfully. Baby steps still, but everything has to have a humble beginning.
Scheherazade’s Sea: continuing journey, 2021, was a year in the making. It was yet again another groundbreaking work on several levels. Personally, I have always presented my “Scheherazade’s Sea” series as a solo artist – creator and performer. This rendition unpacks the continuing adventures of Scheherazade with a brand new approach: Scheherazade was played by the beautiful and talented singer, performer Claire Teo, and joining the team were two other artists, Timothy Lee and Ariel Koh. This made Scheherazade’s Sea: continuing journey, 2021, not only disabled-led (conceptualised, executed and co-directed by me) but also a work featuring a cast of differently disabled artists at various stages of their artistic journeys.
Freelance artists around the world struggle to make ends meet. In Singapore, where the arts is even less valued by society, this struggle can sometimes be very fierce. For freelance disabled artists wanting to turn professional, and departing from the charity models, the scenario is bleak. But artists always hold on to hope, keeping our dreams alive even if by a thin thread. Since Scheherazade first appeared in 2010, my personal and professional journey has been an amazing one, at times tumultuous, but always incredibly thrilling and never boring. It is a story of survival against the odds and unexpected achievements – all of which I owe to my party of valiant human supporters and to Lucy Like-a-Charm. Upon returning to Singapore, I decided that this part of my life’s journey will be one that is actively “paying it forward” for as long as I can create art.
Scheherazade’s Sea 2021, is about newness – finding new friends and loyal supporters, and being gifted the honour and blessing of Clement Space in the form of a differently embodied creature named Lucy Like-a-Charm. In honour of all the people who have supported me so generously in a plethora of ways, I am now using Scheherazade’s Sea to provide practical spaces for other disabled artists in Singapore mentorship and learning experiences they may not otherwise have access to without the benefit of an overseas education. Beyond the narrative and multi-dimensional aspects of the work itself, my intentions were for this work to be a true-to-live yet safe space for professional training and experience for the cast, wherever they may be along their own paths. I can only do this, of course, with continued support from my faithful friends, my younger sister Althea, and my confrèrePeter Sau, who began my Singapore journey for me. I was inspired by Peter’s vigour and spirit in his seminal work “Project Tandem” and his role in “The Singapore ‘d’ Monologues,” and am thankful for our serendipitous meeting – because, being autistic, I have no idea how to network like neurotypical people do and so every angel in my life is to me truly a gift of providence. Thank you, Peter!
Scheherazade’s Sea 2021 is also a practice-based research into navigating the realm of the so-called ‘invisible disability’ as well as un-noticed vulnerability, and forging new strategies to artistic practice that provides access in ways that are unavailable in traditional approaches and methods. I am currently working on the final report and will share my findings soon.
A note on why I continue to make this work freely accessible to all, despite having been told to keep away from the public eye in order to pitch it to various festivals and events in Singapore and overseas. When I created Scheherazade’s Sea, way back in 2010, I meant it to be a richly textured work that everyone and anyone could easily partake of, without exclusions or arbitrary boundaries to separate people. That intent still prevails today, and even if it means no festival or big event would now want to feature this work, it is ok. The latter will be a feather in my cap and that of all the cast and crew, most definitely, but I prefer still to stay true to my raison d’être as illustrated here by a picture of Lucy Like-a-Charm, black greyhound wearing a turquoise collar with bright red silk flower, in down position, half her body visible, long slim legs, paws outstretched and facing left, against a textured ‘furry’ beige background, and cursive text in black reading:
I hope you enjoy the video and if you are a curator, we would, of course, love the opportunity to be featured in your festival or curated collective show if you understand my decision to make this video publicly available.
If you’d like to read my opening speech at the online premiere, please click on this link.
Yesterday was International Day of Persons with Disabilities. I had the honour of receiving the Goh Chok Tong Enable Awards 2021 UBS Achievement Award. Thank you to ARTDIS (formerly Very Special Arts) for nominating me, and to all my steadfast and loyal supporters in my personal and professional life who’ve believed in my journey and my quest, many of whom have gone outside of their own comfort zones to support me without ever once trying to manipulate or dictate my chosen path. It is this privilege of supported autonomy that is driving me to pay it forward, to offer what I have been given to those who may not have the same supports. This is my wish for all persons with disabilities, that we are given our rights for autonomy with the supports that will help us grow into our dreams and visions. Presume competence. Always. Even though it may not look the same as what you envision it to be.
Singaporean artist/director/producer/performing arts mentor and my collaborator for the last couple of years, Peter Sau, talks about disabled leadership in the Asia Performing Arts Exchange Project. Thank you, Peter. An honour and joy to work with you. You push for excellence and hard work, but you always work hard with heart! Just the way I like it!
some takeaways from Peter…
Can we stop talking about them, stop talking for them, and start to talk with them?
I’m just not yet disabled. (Commenting about age-ing and becoming disabled in old age.)
Why can’t we start to talk with people who know more than us? We need a co-creation space to make something new which will surprise us, which will teach us something which we cannot teach ourselves.
Accessibility works both ways.
We need something new, refreshing. We should be thinking about more time, more approaches, more people to come into the picture so that we can co-learn together and let go of what we know. Letting go of what we know in order to learn new things. Inclusion is for everyone – disabled artists include the non-disabled and reciprocal learning takes place.
and more vignettes from Peter in the Q&A…
When I first started working with disabled artists, I paid for every single transport for wheelchair users, I paid for a sign language interpreter, I paid the allowance for them to start to respect their art… everything from my savings.
We are the biggest sponsor of our own art. Because we love it, we want it.
We could be bankers, lawyers, medical doctors…
Why are we so stubborn? It’s because we are artists.
We can’t change our ‘DNA’ so what can we do about it?
I taught myself… quiet or go on.
Sponsor or find a sponsor.
Convert people to believe and believe, keep on talking, talk until we go to our grave… keep talking about it until it happens before you die…
It’s a bonus to say “I saw it happen”…
I believe I am just one small part of this ecosystem. I’m so bored with mainstream arts, it taught me nothing.
I am an actor, producer, director, for twenty years, I am so jaded and disappointed with what is out there… especially now with COVID19… it is hurting our mainstream artists already, how about our disabled artists?
We can’t do anything about it except to keep believing. For myself, I train them… up-skilling, second skills… when times are good again … when people / government can see that we are sponsoring ourselves, our lives, they would want to give something… to match up…
it takes a systemic change…
it is going to take a long time, there is no easy short cut…
… talking to (aspiring artists) in a classroom, to parents of disabled children to believe in them, to my boss, to my arts council… to friends from the mainstream… I keep on talking… it’s tiring but I want to do it.
It will have to come from us, and then hopefully the whole world would come on board.
After a year of hard work, we have finally launched our new charity! K9 Assistance (Ltd) Singapore is Singapore’s first and only charity organisation focusing on assistance dogs for the disabled. We are committed to educate, create better understanding, awareness and acceptance, as well as eventually match assistance dogs with disabled people.
In this video, I announced Lucy’s retirement from active duty as my assistance dog. She will continue to share her special joy as K9 Assistance’s Ambassadog!
Sonia has an amazing way with words. It doesn’t need to be a lengthy piece, in fact, her words are so lithe and fluid, yet exquisitely penetrating and precise, that I am left catching my breath at the sharp, deft unlocking of a wealth of unspoken, unworded meaning. And, in an uncanny way, each and every time I am incapable of bringing into the tangible realm what I wish to express, somehow, Sonia’s words will give strong yet delicate voice to the rhythmic humming resonating in my being.
“How rare it is to see people with complex needs just being. Humming is natural, and nothing is dressed-up; this isn’t ‘special needs’ for consumption. There’s no attempt to exoticise or glamorise our being. The camera captures ordinary moments valuing autistic language and expression on our terms.”
This is exactly what first hit me right there at my core, when I first watched the film. It unpacks our meanings, our world, on our terms.
Actually, I watched it three times, each time catching different details and sensory echoes. In fact, I’ve also run it over and over again in the background, allowing different aspects of it to weave in and out of my consciousness, meandering and winding around caverns of sensory subconscious as I engage in different light tasks. I love the clattering sounds, the staccato, the ripples, the appoggiatura and trills, the sudden drop in levels, the pitter patter of rain like crisps dancing inside a foil coated box…
And then, Sonia says this:
“It suddenly strikes me that this film feels like home to me because this is where I began. There’s a circularity in writing this piece for Project Art Works, which underlines its immense importance as an artwork. As a young art therapist, I was employed in a residential setting for adults with complex needs; not knowing that I was myself autistic until very many years later. Since then, I’ve come to recognise aspects of myself in those with more complex needs than my own, but as a younger person I had no way of understanding why I was so drawn to this world. Years of my life have been wasted and lost.”
Wasted and lost! Wasted AND lost! WASTED and lost! Wasted and LOST! These words sound like bells, whose echoes and reverberations fill my chest cavity, pounding against my rib cage. I think of the bells inside Magdelen College Tower on the first of May.
Everything is there, embedded in Sonia’s three words. This world that is so simply presented in the film, a realm so full, so abundant with wonderment.
When I first read Searle’s review, pronouncing it “problematic” without any further explanation, a searing hot rage shot through my core. I was shaking with fury, yet hurt, it brought back horrific wound trauma, I know that kind of dismissal too well, flicking away the rich tapestry of my multi-textured world like crumbs off a table, that neuronormative gesture of disdain so ponderous, so callous, so crude in its garish ignorance.
But then, after the film had played umpteen times like a comforting echo in my senses, I now feel sad. Sad for Searle and those like him, who are unable to access and luxuriate in our world, who stand outside and sweep at crumbs on neuronormative cafe tables, never noticing the flow, the undulating rhythm, the shuddering patterns, and the tiny clicking, chirping sounds the specks make as they fall, fall, fall to the groaning, giggling ground. A tragedy, to me, not to be able to resonate with the richness that is our multidimensional universe. This is the true loss. Yet, do they know of this loss?
Sonia’s words again, in her other article responding to Searle’s review:
“This film speaks to me in my language. This is mysensory world. For me, Illuminating the Wilderness is a rare and beautiful thing, and I feel sorry for those who can’t see it. Our immersive connection to the sensory world can feel vast and expansive – it is beyond words. This is supremely exciting to us, and joyfully fulfilling. It’s why we don’t need to people so much – we have this!”
Yes, we do indeed, and what a wonderful world it is!