Welcome to episode 13 of the intersections on the spectrum podcast. The intersections on the spectrum podcast is the brainchild of Doug Blecher and Kelly Bron Johnson created to discuss intersectional issues within the autistic community and give visibility to commonly marginalized, repressed, underrepresented, or erased identities and issues. We aim to introduce you to the people and stories you didn't know about, but needed to hear and hope that by seeing yourself represented in the community, allows you to feel seen.
Due to a corrupted audio file we are unable to have the audio for this episode. However, we do have the transcript for you to read from today’s guest Dr. Dawn-joy Leong. Dawn is an autistic researcher and multidisciplinary artist whose PhD presents autism as parallel embodiment and autistic elemental empathy through multi-art practice of immersive experiences and performance.
We welcome the wonderful Dawn to this episode of intersections on the Spectrum. Below you will see our questions and Dawn’s wonderful answers.
We all have more than one identity that describes us, what would you say are the identities that you identify with?
Dawn: I am an Autistic woman, researcher, multi-disciplinary artist, music composer and human companion to a canine angel named Lucy Like-a-Charm.
You describe yourself as an autistic-artist researcher. How do all of those identities connect for you specifically in helping others?
Dawn: “Helping others” is something ingrained in me by my parents from a young age. I was born into relative privilege, but my parents believed in a somewhat socialist ideal of sharing goodness wherever possible. I think that autistic children are mostly very trusting and generous, and though not all my siblings grew up to emulate my parents, this ideal appealed strongly to my autistic mind and heart. However, I discovered very early in life that the human system in reality is far from the rosy picture of sharing and caring for each other. In fact, the term “dog-eat-dog world” is unfair and inaccurate - dogs would never do to one another what humans do to fellow humans. One of my childhood dreams was to run far away from humans and live in a cave with animals as my companions. I’d grow my own food and create my own paradise. But when I realised there’d be no running water, showers and flushing toilets, I quickly abandoned that plan.
To tell the truth, I was never and still am not comfortable with the label “advocate” (and definitely not “activist”). The advocacy I have done and am still doing is simply driven by need. When I returned to Singapore, I found absolutely no genuine autistic representation in the autism domain, let alone autistic leadership, a concept which at the time caused mental short-circuits in non-autistic people’s minds. An Australian ally who was in Singapore attending an autism event remarked to me with some surprise that he did not get to meet a single autistic person in that event. How could this be, in a country like
Singapore? Well, “Nothing About Us Without Us” was an alien concept in the official autism realm in Singapore back in 2017. The prominent voices were non-autistic: authorities, psychologists, psychiatrists, parents, teachers, therapists etc. I pushed very hard for a strong autistic presence in the Asia Pacific Autism Conference 2019, which was held in Singapore, and to me, it was a pivotal and ground breaking event in the history of autism in Singapore. From zero representation to a hefty ‘coming out’. The one thing I failed to do was to convince the scientific committee (in which I was the only autistic member) to invite a few prominent autistic researchers to deliver the important Keynote speeches. The ‘compromise’ was to have Dr. Damian Milton (vigorously promoted by me and an ally from the UK) to give one of the plenary speeches, and myself another plenary speech. Two autistic researchers. But since APAC is an Australian conference, held outside of Australia, in Singapore, for the very first time, the open call for papers included a robust number of autistic presenters, from Australia and a few from Singapore.
It was a memorable event in every way - but I suffered from autistic burn out, from which I am still trying to recover now in 2021. While this may suit some autistic people, I am just not made for this kind of activity and it took too much out of me. Was it worth it? Yes. I don’t personally benefit from any of the advocacy I’ve done, but it was worth it because I know I’ve opened the way to the next generation of autistic people to create their own pathways and take on autistic representation in Singapore and bring it to the next level. I am now focusing more on my artistic practice, and together with my non-autistic ally and close collaborator, theatre director Peter Sau, we are mentoring disabled artists who want to have a shot at turning professional. We’ve pulled off a few groundbreaking projects in the past couple of years, and are currently working on my upcoming production, “Scheherazade’s Sea: continuing odyssey”, an autobiographic narrative unfolded through a richly textured combination of storytelling, poetry, original music, song, video and soundscape with live performance, featuring two artists with Down Syndrome and the lead played by an artist with visual impairment. The work will premiere in September this year, thanks to a Creation Grant from the National Arts Council, and production partner Very Special Arts Singapore.
In terms of research, what would you like to see moving forward in terms of research that will actually benefit autistics?
Dawn: There has been an incredible surge in autism research, and a lot of very good research is emerging from autistic researchers. I co-founded an interdisciplinary autism research group in UNSW Sydney with a fellow PhD scholar, our founding members were a mix of autistic and non-autistic, from different fields - robotics, design, art, psychology, neuroscience, education etc. It has grown since, to include researchers in other universities across Sydney. A great deal with good work is being done by autistic researchers like Damian Milton, Ruth Moyse etc in the UK as well.
So, I don’t have anything to add to this apart from one area which I feel has been neglected or marginalised: the study of the connection between autistics and animals. I think many autistic researchers are afraid to embrace this connection because of the
horrible studies being conducted by non-autistic researchers on “autistic” zebra fish and “autistic” mice etc. It is also an inherent specie-ist superiority that humans have, this strong tendency to look down on other animals and feel insulted to be compared in any way with the creatures deemed inferior. This is stubborn ignorance, in my view. If we can shift our human-centric paradigms, we’d be much better for it. There is a lot to learn about our own humanity from animals, and the rest of the natural and material universe. Autistic people see things differently, after all, so why is this important area of research being shunned by autistic researchers?
When I talk about this, there is silence, as if it is a taboo subject. If autistic researchers don’t take this up, then non-autistics will continue to create bizarre comparisons as they wish, the mental intellectual schism will widen and godeeper, and we all lose out on a precious, dynamic and powerful resource as a consequence. Such a pity. If I were younger, I’d pursue another PhD in this area. Autistic primatologist Dawn Prince-Hughes has had a profound influence in my own research. My favourite quote from Dawn is this one from a 2013 BBC news Outlook interview, “Gorillas taught me to be human” ( https://www.bbc.co.uk/programmes/p01fdtk4 ): “You know it’s funny because I’ve been accused of anthropomorphising gorillas, but I think in fact what I have done is I have gorilla-morphised human beings. I didn’t see all these great traits in human beings before I saw them in gorillas. When I look at gorillas, I see people. When I look at human beings, it’s a little daunting.” “Yes, the gorillas gave me my humanity.”
You are the founder of K9 Assistance, Singapore’s first and currently only charity organisation promoting the benefits of assistance dogs for the disabled. However, getting an assistance dog can be challenging. Do you have any suggestions to make the process less challenging for people who need those dogs to improve the quality of their lives?
Dawn: A co-founder, not the founder - most of the vigorous work was done by our Chairman, Cassandra Chiu, who is Singapore’s first woman guide dog handler and has almost Single handedly laid the ground in our country advocating for guide dogs, public access, awareness and acceptance. At present, Lucy is the first and only assistance dog in Singapore that is not a guide dog. Our vision for K9Assistance is that all disabled persons, not just the blind or visually impaired, may be able to benefit from the amazing support that assistance dogs can bring. We will be working closely with various assistance dog organisations in Australia to kickstart our programme, the first of which is mindDog Australia ( https://www.minddog.org.au ), which helped me train Lucy and welcomed us into the mindDog family.
Yes, getting an assistance dog is indeed challenging, not only at the beginning but throughout the journey. Financial cost is the most daunting element. It costs a lot to train an assistance dog, and so getting one will be costly. But it doesn’t stop there. Unlike a wheelchair, a dog is a sentient being that needs proper nutrition, medical support, exercise, playtime, intellectual stimulation, emotional attention and a great deal of love.
I have met disabled people who don’t take good care of their assistance dogs, but just use the dogs as status symbols, emotional props, and advertisements for their own agendas. This will not be tolerated at K9Assistance. I cannot speak for other organisations, but at K9Assistance, we want to make the entire process and ongoing journey as smooth and painless as possible, while maintaining high standards in welfare and wellbeing for both dog and human. We aim to provide the dogs without cost to the disabled person, as well as walk the entire journey alongside with our clients through our specially designed support programme that includes education, information, consultation and various checks and measures. For the less financially well off, we will help raise funds for emergency medical costs. We are a very young charity, and we want our clients to grow with us as we expand and eventually create a community of mutual support and care. Assistance dogs dedicate their lives to improving ours, we must also be willing to commit an important part of our lives towards caring for them. It must be a symbiotic relationship, otherwise, it is just exploitation and cruelty.
Some assistance dogs are specific to supporting autistic people. What are some things that are unique in these dogs that help autistics?
Dawn: A certified assistance dog must perform at least two tasks that alleviate specific aspects of the disabled person’s disability. Most autistic people are hypersensitive and have accompanying struggles with anxiety, depression etc. For many of us, having hyper senses can be both amazing as well as disabling, especially since we live in a desensitised world that was not built or structured with us in mind. Just going outside of our stable and secure home environment can be anxiety laden and overwhelming. An assistance dog can help to mitigate the effects of sensory overload and prevent meltdowns. Lucy is now retired, but when we lived in Sydney, she helped to predict my sensory anxiety and provided alerts to me about potential sensory overloading situations. If I was approaching meltdown or in a dissociative state, she would place pressure on me using her paws or her body to stabilize my spiralling senses and give me a sense of comfort and safety. In fact, Lucy saved my life at one point when I sank into a dissociative-suicidal state by performing deep pressure and waking me up.Having Lucy also helped me to feel safer when meeting new people, in fact, her presence has expanded my world in ways that no human ever could, and we’ve had the most amazing adventures beyond my wildest imagination. I can honestly say that the last nine years with Lucy has been the most happy, fulfilled and empowered time of my life.
Beyond K9 Assistance, you are a board member for the Disabled People’s Association inSingapore. Here in North America we still have a long way to go to better support all autistic and disabled adults. Where do you think things stand right now in terms of the support for disabled adults in Singapore?
Dawn: The Disabled People’s Association Singapore is the only organisation here that focuses on advocacy and one of the few that are actually disabled-led, where disabled persons form the majority in the Board of Management. You can read more about our history in our website, dpa.org.sg. Since the 1980s, the DPA has been educating the public about disability, advocating for improving quality of life, equity, autonomy, access and inclusion. In Singapore, the charity model still prevails, but the DPA and our allies are working hard to push beyond this archaic framework. Singaporeans are generally kind and quite generous, we mostly want to the right thing because most Asian cultures here believe in some kind of system of karma. There is a lot of fundraising for people with disabilities, programmes to help us find employment and public campaigns geared towards awareness. Our building laws are also quite up to date where wheelchair access and other physical features are concerned. Of course, there’s still a lot more to be done for physical disabilities, but at the moment, sensory accommodations are left out of the picture, perhaps because of lack of awareness and hesitation to launch into relatively uncharted territory. I would like to see us progress towards the social model of disability and even beyond, with more representation of actual disabled people on the boards of disability organisations, and to have better access and inclusive accommodations in public spaces for those of us with so-called ‘invisible’ disabilities, like calm rooms in every public building that are properly designed by actual end-users.At this point, I’d like to clarify that it’s not a totally dire picture, because progress is being made as we speak, and I am the professional consultant for the design of the NationalGallery Singapore’s upcoming calm room, and we have just completed our participatory research and community feedback sessions. I hope this is the beginning of many more consultative projects involving actual disabled professionals partnering with institutions.
What types of stories matter to you that you think it would be important for us highlight as we move forward with Intersections on the Spectrum?
Dawn: I like that your programme seeks to highlight persons of colour and cross cultural aspects of Being, recognising humanity as eclectic and celebrating diversity. I feel that personal stories from minority communities, intercultural narratives, anecdotes emerging from diverse perspectives are much needed. The more differences we embrace, the more we begin to realise our commonalities.
To learn more about Dawn please visit the following resources
Professional Website: http://www/dawnjoyleong.comK9Assistance Website: http://k9assistance.sg
Autism & Disabilities:
Artistic Practice: https://www.facebook.com/scheherazadesseaAssistance Dogs:https://www.facebook.com/K9AssistanceSingapore