Something About Home

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.