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 more adventures, and a few misadventures too. But delay and slow churning is part of how my Autistic brain works – every little detail is taken in, stored, ruminated over 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”, commissioned by the National Gallery Singapore, 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, now Head of Performing Arts and Programme Director at ART:DIS.
Access and inclusion?
There are many things I have to unpack about my experience in this work – in which I 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, political or corporate 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. Of course, I am still learning, and my views may change as my understanding and experiences develop.
Because of my combined sensory acuity and compromised immunity, Peter came to my home for pre-rehearsal sessions, where I practised with him separately from the rest of the cast. This was a make-or-break point of support for me. If I had to rehearse with everyone all the way, I would not have taken on the project. As it happened, the combined rehearsals and team sessions were quite excruciating, even though we had plenty of sensory breaks and the schedules were planned such that everyone’s needs were carefully considered. My senses always scream whenever I am trapped inside the vortex of human bodies, in crowded shopping malls or events, moving around, talking at once. Add to the mix the human smells – some really pretty confronting, especially after everyone has had really long days. Well, our full rehearsals were intense, and I had to deal with all of the above, our human forms crammed together in a small space, plus additional odours emanating from the carpet, echoes and reverberations bouncing here, there, everywhere in a confusing cacophony, and then, to top it all, I had to muster the inner energy required for my role. Theatre is a jumble of bodies, it is not an art for the hypersensory or the physically fragile. I get that, which is the reason I never aspired to become a professional actor. I’m acting enough, as it is, being Autistic and female, according to my own favourite quote I coined, constantly “performing the unnatural as naturally as possible.” And I am physically frail, most unsuited for the theatre. Yet, when it all comes together, it is immensely satisfying.
In professional artistic practice, or any professional practice across all fields, ‘inclusion’ does not mean mollycoddling and fancy frills. I still had to push myself very hard, and even beyond what I was comfortable with. What kept me going throughout the intensely challenging rehearsals was the director’s dedication, the knowledge that he was going as far as he possibly could go to practise access and inclusion, with a keen, meticulous eye for detail. Peter was mindful of each individual, while at the same time, the entire team were united under a strong ethic, a highly skilful and very firm 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.
Remuneration as a tangible form of access and inclusion. A fundamental of respect.
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; and I have rejected some others that I felt crossed the line into exploitation and bullying. It is understandable, of course. Colonialistic domination 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 thus we always do our best to budget for fair and due 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 not get the role or position. Simple. Professionalism is not charity whichever way you look at it. All parties must operate within the tenets of professionalism.
Another crucially important approach taken by the director, Peter Sau, was to factor into the budget plan disability access costs from the very beginning, detailed and well planned, according to each individual’s needs. Not as just an afterthought. For example, sign language interpretation and creative captioning were not only provided for, but also woven into the very fabric of the show itself.
Well, if you’re curious now about my fee, I’ll be open about it here. Although I was the only artist in the cast with international experience, and I was asked to play two separate roles, I was paid the same fee as every performer. That was my own decision, when Peter discussed this issue with me. I chose to do so, as my gesture of solidarity and support for a common goal, a common ethic, because I trust the director and I believed in the pioneering 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 us so much more to simply stay alive at all?
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 disability access costs. When asked, they have the gall to tell me that they never factored any of this into their budget. “No budget!” is the oft familiar bleating I hear. No budget for fair access and true inclusion? No budget for the disabled to participate? What is your ‘disability event’ worth then? These are questions I always have in mind when scrutinising invitations to collaborate. One of the most absurd conversations I had was with a representative of a well known arts organisation, a social enterprise that claimed to be developing community and building bridges through the arts. They wanted me to speak to a group of aspiring young artists at one of their public events. When I asked about their honorarium, their response was that well worn “No Budget!”, very defensively too. I was not pleased at all, but I did not stoop so low as to argue or bargain. I just said No Thank You. Then, they decided to offer me – as a last resort – transport money for me and my dog (yes they called Lucy my “dog”, even though they knew her name). What came as an unpleasant surprise, was when I turned them down yet again, they had the gall to lecture me about how ‘senior’ artists should be willing to speak for no fee to aspiring young artists, in their own words, “To inspire them to become artists in the future.” What a twisted, ludicrous, preposterous line of reasoning! I replied with this question: “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 – oh, and disabled ‘senior’ artists at that – are expected to work for free? Who in their right minds would be inspired by that?
Let’s 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 added costs like medication – again, some of us need specific and costly interventions just so we can function even at the most fundamental level. Healthcare is not cheap in Singapore. How about special diets, allergies, sensitivities and supplements? Throw all that in the mix too, would you please. And, finally, the most overlooked, ignored and misunderstood of all, sensory accommodations. These are complex and subtle, as our senses are too often overloaded, suppressed and repressed. The costs grow even higher, if sensory needs are to be supported, in addition to others. For example, if I am required to expend massive amounts of energy, I cannot arrive dishevelled and frayed, so I am unable to travel via public transportation, and will need to use taxis or hire cars to take me to and from work. It is mindboggling and wearying at the same time – people, even those supposedly close to me, have declared that I made up all my hypsensory and autoimmune reactions, because, according to them, I deliberately wanted to play the “princess”. The toll is a heavy one to pay, simply to be part of normative society in any way at ll.
As outlined above, being disabled is extremely expensive, though the actual costs vary according to the individual and the type/s 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, all those 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 those jobs may be. For most artists with disabilities in Singapore, “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 in their faces, while 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 who is a vigorous campaigner for autism and autistic persons in my country:
“Be careful of what you tell that Dr. Dawn, because she just says whatever is in her mind and the whole world gets to hear about it in her blogs and writings, 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 an intrinsic, proudly Autistic trait? I do not need everyone to like me, not at all, but I am mindful always of this sobering fact: 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? I say it as it is simply because I can and I must, stand in this gap.
Access and inclusion, to me, starts with giving disabled persons access to equity, autonomy, respect and justice, and including disabled persons in ways that empower this equity, autonomy, respect and justice. Disabled artists have the right to proper training, mentoring and opportunities in order to grow, and we also need to be paid accordingly. What is most important to access and inclusion is not the fanciful blubbering, 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 very often boils down to something practical and crucial to our survival: fair payment. Which is sadly scarce and hard to come by here in Singapore.
Yes. Returning home to Singapore has been full of interesting adventures to be sure.
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. The truth is, 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.
Last thoughts…
Contrary to the milieu of the time, my personal experience with this production, Something About Home, was most positive, despite the sensory challenges I faced due to my own lack of self-advocacy for my personal access needs. And this experience provided me with more questions to ponder and ideas to study moving forward. 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 sensory challenges. From here, emerged the access and inclusivity strategy that I experimented with in my own work, Scheherazade’s Sea: Continuing Journey, 2021.
To end this long ramble, here is the video of the Director’s Interview made by the National Gallery Singapore. It was actually Peter’s idea to include as many of us as possible 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 sickly sweet sticky icky candy floss that never fail to melt in the tropical heat of Singapore. I hope you enjoy the short video as much as we enjoyed the entire process of being at the forefront of inclusive artistic practice.
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 2021 was yet another groundbreaking work, at least in my country: led by a disabled artist, featuring other disabled artists, with excellent disability support professionals, and Singapore’s most experienced director in the arts and disability sector. It was a bumpy ride, to say the least. But I am ever grateful to our team for their dedication to my mission, their strength and verve, and especially to my closest ally, Director Peter Sau for his unwavering loyalty, even when things were rough and uncertain. The greatest practical challenge I faced in this project was honouring my own ethics of practising true inclusion the way I feel it ought to be practised. The grant I was awarded was a small mainstream grant, for an experimental work-in-progress, but with no additional allowance for disability support. Therefore, if I wished to provide any disability support to my cast at all, the expenses would have to be gouged out from elsewhere in the budget. I refused to ask my cast to pay out of pocket for anything as far as I could help it, unlike how other projects claiming “inclusivity” make their PWD participants contribute their time, effort and energies in exchange for “exposure” and nothing more, and so the money came from my own artist’s fee, as well as all other technical editing work. The project stretched across a year. That meant that I had to find other means to support myself. It also demanded that I single-handedly record, edit, create all the special effects, captioning, labelling, video editing and rendering etc. I had never attempted this level of technical work before, and so, completely untrained, I had to learn everything from scratch. I also had to procure a faster computer in order to do the rotoscoping effectively. There was no budget for this kind of equipment. I was working 18 hour days in the final stages of the production, despite a fragile physical condition. My medical bills hit the roof, just so I could stay alive, awake and still functioning, in order to complete the work. I owe my survival to Lucy’s constant companionship, and the strength and inspiration to keep going that she brought to the darkest nights and most frustrating moments of failure during this amazing learning adventure. Rotoscoping was the most difficult technique, which I still could not quite master, and that is quite evident in the outcome. But I remind myself that it was a monumental feat to be proud of anyway, and this was meant to be an experimental work, not a polished, slick piece of videography. This experience highlighted the lack of recognition in our arts sector for the needs of artists with disabilities. A complete disregard, in fact. But I have no regrets whatsoever, the journey in itself was worth all the excruciating pain, because of Lucy who was by my side throughout, and the wonderful humans who walked side by side all the way with me, without complaining, never losing faith and trust in me.
(Watch full video on Youtube if it cannot be played here – 31minutes)
Scheherazade’s Sea: continuing journey, 2021, was a year-long project. There were many “firsts”. 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 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 decided to now use Scheherazade’s Sea 2021 to provide practical spaces for other disabled artists in Singapore, open up mentorship and learning experiences they may not otherwise have access to without the benefit of an overseas education (which I had the privilege of enjoying). Beyond the narrative and multi-dimensional aspects of the work itself, my intentions were for this work to be a true-to-live rigorous yet safe space for professional training and experience for the cast, wherever they may be along their own paths. I could 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.
A note on why I continue to make this work freely accessible to all on Youtube, despite having been told to keep it 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 here:
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 even more widely publicly available.
If you’d like to read my opening speech at the online premiere, please click on this link.
Video excerpts below, if you’d rather watch small, key segments instead of the long full version.
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!
Follow us on Facebook at K9 Assistance Ltd Singapore. Join our group, engage in discussions, ask questions and help spread the awareness and acceptance!
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!