something about home and inclusion

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!

Seeing Singapore Clearly through the Eyes of Disability

This morning, the Birthday Book 2020 arrived. Even though I don’t get a single cent of royalties from this book, I am glad to have had the opportunity to contribute to this collection, and I chose a topic that is important to me: disability. I’m allowed to share my own essay in my networks, and so here it is. But before you read the piece, please check out my Facebook post for some background information, and do please join us at the launch if you can. Thank you!

And here is the short essay:

Seeing Singapore Clearly through the Eyes of Disability – Dawn-joy Leong
First published in The Birthday Book 20/20: Seeing Clearly edited by Selina Chong and Chua Jun Yan (Singapore: The Birthday Collective, 2020).

I was born in the year of Singapore’s independence. My childhood memories were filtered through the lenses of my immediate world. To me, Singapore was a small, brave country with a firm but capable government dedicated to creating better lives for citizens.

My parents had friends from diverse backgrounds and I was taught to embrace diversity. Father, a dental surgeon, often saw patients who could not afford to pay for treatment. Out of gratitude, they brought him whatever they had: home- baked cakes and food, eggs from their kampung chickens and even the occasional live fowl. Mother was a teacher, and she used to give extra lessons to students who were floundering and unable to afford private tuition. I remember mother bringing me along during some of her home visits, armed with books, stationery and food for the students and their families.

I lived a life of relative privilege, but my parents inculcated in me a sense of civic duty. They taught me to view everyone with compassion and respect. I also firmly believed in our National Pledge’s commitment to “justice and equality”. Despite being labeled as “eccentric”, I enjoyed a healthy social life, and employment was not an issue. Unaffected by discrimination or injustice, I naively believed there wasn’t any in Singapore.

Then I found out at the age of forty-two, while pursuing an M.Phil in music composition at the University of Hong Kong, that I am Autistic. After Hong Kong, I received a Ph.D scholarship at the University of New South Wales, Australia. I openly and proudly identified as Autistic, using the Identity-First language preferred by most Autistic people globally. I acquired a psychiatric assistance dog, Lucy, for my sensory anxiety, with the legal right to have her with me everywhere I went. I helped to found an Autism Research Group comprising autistic and non-autistic members across different disciplines. I was awarded my school’s “Dean’s Award for Excellence in Research”, an accolade given to one top PhD candidate per year.

It was only upon returning to Singapore, proudly identifying as Autistic, that my erstwhile gentle and salubrious world cracked open to a harsh reality. In late 2016, Lucy and I made an exciting journey to Singapore, traveling in-cabin together for the first time. My elation quickly fizzled away when I stepped out of Changi and found that Lucy was not welcome in most places. Assistance dogs for the disabled have existed for many decades, yet most Singaporeans – including those who work in the field of disability – had never heard of them, apart from Guide Dogs for the blind.

The stability of full-time employment eluded me. Non-disabled people claiming to be disability experts corrected me in my use of self-identifying terminology, as if they knew better. When I asked for an honorarium to speak at events, I was told variously that I should be grateful for the “exposure”, or that I should work for the benefit of my “own community”, or that experienced artists should give talks without payment to”‘inspire” young people.

Strangely enough, these people were paid to do their jobs in whatever enterprise they represented. Here was my reply: I did engage in volunteer work. For example, I was and am a Board Member of the Disabled People’s Association. But it is my right – and not someone else’s – to decide to whom I offer my time, energy and expertise. Disabled people have higher bills to pay just to exist. How are we to do so if all we ever did was volunteer work?

Where are the voices of those who are actually disabled in this cacophony of “awareness” and “inclusion”? Disabled leadership is not about exclusive power or taking away jobs from the non-disabled, but rather having a dignified place at the table where our voices – personal and professional – may be valued alongside our non-disabled peers.

My story does not end in tragedy and hopelessness. After two years of knocking repeatedly at the nebulous “glass ceiling”, I decided that the way forward was self-employment. I met disabled and non-disabled people who were sincere and committed to the goal of equity and progress and unafraid to step into uncharted ground. These included university professors, young researchers, representatives of organisations, and people with diverse disabilities joining together to widen horizons beyond old models of charity.

In 2019, I co-founded the Disabled Artists’ Collective, a pan-disability group of freelance artists. I began collaborating with theatre producer-director Peter Sau, a pioneer in theatre practice with disabled artists. I helmed Singapore’s first disabled-led artist residency at library@orchard, featuring three neurodivergent artists from the Disabled Artists’ Collective. In June, I was one of two Autistic Plenary Speakers at the Asia Pacific Autism Conference 2019, marking the first time actual Autistic persons were represented prominently in a major autism event in Singapore.

In 2020, six members of the Disabled Artists’ Collective performed in a groundbreaking promenade theatre show, “Something About Home”. It was Singapore’s first fully accessible and inclusive mainstream professional production featuring disabled artists, but not limited to the arts and disability platform. The National Gallery also commissioned my work, Clement Space, a calm room based on my research in Autism, designed from within the Autistic paradigm.

As a disabled person, I see Singapore more clearly now than ever before. Insecurity, ignorance and exploitation prevail, but there is also sincere intent, commitment, and
vast potential. I wish for a Singapore where the disabled and non-disabled have equal rights to stand together as “one united nation, based on justice and equality”.

Here is my raison d’être:

“It is not my purpose to ‘fix’ what is ‘broken’, but to empower beauty in the vulnerable and unseen.” Scheherazade’s Sea, 2010.

To order the book, please head to the Birthday Collective’s website. They’re offering a 10% discount for pre-launch orders (online launch happening 22 August this Saturday!). ** I don’t earn a single cent of royalties but do please support this good work!

outsider — bunnyhopscotch

Reblogged from bunnyhopscotch. Take note, those folks who want to contact me to do work, some basic fundamental professional decency is required. Do not bother if you are not prepared to uphold fairness, justice, equity and respect for persons with disability. Thank you.

I read Sara Luterman’s review of the new HBO series, The Outsider, with interest. The whole kerfuffle over Autistic (mis)representation in the media – from documentary to fantasy – has been stirring and swirling and churning and heaving and whatnot else in that great cauldron perched precariously atop a spitting fire of contention for sometime […]

outsider — bunnyhopscotch

access in action

The artistic sphere is nowadays abuzz with terms like “access” and “inclusion”, with all and sundry jumping into the scene laying claim to these trendy words, but how many actually understand what they mean in practice, I wonder? No, I am not talking about the fluffy feel-good pulling-at-heartstrings stuff, or the tired and worn circus-style acts that purport to ‘include’ the disabled but are actually poorly contrived, inexpert displays of awkward disability tokenism. I am looking for concrete, meaningful and practical facilitation of access, and an inclusion that allows persons with disabilities to function from out of their individual optimal realm. Every person has the latter, regardless of what it actually is in shape, size, colour or form, we all each have our own little space, a Clement Space, in which we feel safe and from which we are allowed to emerge wholly ourselves, not broken or wanting to be fixed.

A working trip to the United Kingdom at the end of 2019 perfectly illustrated for me in real-time the essence of true, respectful, creative, meticulous and effective support – that is, dynamic access and inclusion in action.

Continue reading

Communication as Access & Inclusion

Clear Communication is Access & Inclusion

Clear and direct information is the autistic person’s access to the human world. Neuronormative communication is confusing and extremely anxiety inducing. Questions go unanswered, conversations are left suspended in mid-air, semantic meaning is vague and the autistic is supposed to be the one with the communication impairment?

Communication is respect. Clear communication is like a well-built ramp for a wheelchair user to access spaces that are otherwise inaccessible. Without clear and timely communication, the autistic person is made to crawl around the floor with no idea where the entrances and exits are, crawl up the stairs and still not have any confirmation of exact location.

Communication is access and inclusion too, in case people forget. What is important is not always visible or physical. People who work in disability focused fields need to remember this. It’s not always about wheelchairs.