Disabled Leadership in practice

In a previous post, I mused about Disabled Leadership, the great divide between theory and practice that many disabled persons face, and suggested one fundamental element that is crucial to recognition of disabled participants in the conversation on disability: payment as a basic mark of respect. Now, in this brief ‘follow-up’ post, I’d like to provide some straight-forward concrete examples of its practice in the arts and film.

I’ve iterated and reiterated before, and now once more, I am no activist – I have an aversion for confrontational activity, but advocacy is something that most disabled professionals are forced to engage in (in some way or other) due to the dominating climate of ableism and stubborn ignorance surrounding the disabled practitioner. In other words, advocacy – sometimes quite vehement and insistent – is made necessary because disabled practitioners need to clear the debris-strewn paths, clogged channels, and polluted waterways so that we can proceed with our practice.

A non-disabled friend asked me a question that inspired this post: Can you give me some concrete examples of Disabled Led Practice? I am an artist-researcher, my main focus of interest, therefore, is in the arts, and so I shall address this topic from this perspective.

What is Disabled Leadership and what is Disabled Led Art?


Deej, a movie / documentary that has recently burst into the scene with astounding and well-deserved success and accolades, is about the life of DJ Savarese, a non-speaking autistic person. “Not just another film about autism!?”, the jaded may well ask. No. Not at all. This one is about DJ, but it is also by DJ. About Us With Us. I urge everyone to visit the film’s website to understand more.

Among its numerous honours, the movie has just won the prestigious Peabody Award 2017. The text below is from the Peabody Award’s programme:

“DJ Savarese (“Deej”) is a nonspeaking young man with autism who communicates with others via text-to-voice synthesizer, and here, via documentary and poetry, tells his own story in a collaboration with director Robert Rooy. DEEJ refreshingly avoids the trap of speaking for a person with autism. Instead, the viewer hears Deej’s own reflections and editorial as he journeys through high school and seeks admission into Oberlin College as the institution’s first nonspeaking autistic student. Filmed over six years, DEEJ enjoys remarkable access but avoids brash intrusion precisely by allowing Deej himself to dictate the terms of engagement, to explain scenes and events, and to determine what we should hear or see. We also hear several of Savarese’s poems, beautifully accompanied by Em Cooper’s oil-painted animation. And just as Deej’s adoptive parents are guided by an ethos of inclusion, the film demonstrates how documentary engagement with autism can show its subject’s brilliance and accomplishment rather than dwelling on limits and barriers. Ultimately, DEEJ takes several masterful steps forward in inclusive filmmaking, while using Savarese’s poetry to offer an at-times soulful study of adolescence, leaving home, and becoming an adult. For this, America ReFramed: Deej receives a Peabody Award.”

“Presume competence.” This is something disabled advocates have been repeatedly saying. Presume competence. Always.

When Disabled Leadership is properly practiced, competence is presumed. It sounds simple, doesn’t it? And yes, it should be. Yet, non-disabled persons – from parents, teachers, to doctors, psychologists, and researchers – seem to find it extremely difficult, judging by the lack of such presumption (of competence). The sad, prevailing climate is, in fact, presumption of incompetence. Not only that, but there is a sense of defensiveness whenever the topic of Disabled Leadership arises, as if the non-disabled stakeholder somehow feels threatened by a disabled person asking for equity, respect, and yes, a leadership position in decision-making processes.

At a recent workshop I attended about disability and the arts, I made a remark that one approach that will guarantee positive change is to start with Disabled Leadership in every aspect of practice. This does not mean that we sack all non-disabled teachers, or that disabled students immediately take over the classroom. It does not mean non-disabled artists and administrators are immediately out of a job while disabled people flood the stage and call all the shots from the top. It does not mean that your job is going to be taken from you, dear non-disabled artist, art therapist, arts administrator, art teacher etc. Not at all. Non-disabled practitioners and allies just need to open their minds to different ways of doing things. Success is something we can all share as a result, if we are willing to change the measurements and constructs of ‘success’.

Take a look at the production of Deej, the movie. This is the model. How can a non-speaking autistic person, one that the medical pathological model of autism would pronounce ‘severely handicapped’ and ‘low functioning’, take on a leadership role? Presume competence. First. Not incompetence. If one way of practice does not work because it does not suit the particular paradigm of the disabled person, then make changes in the approaches and strategies in order that competence can be presumed, and executed. The film is about DJ Savarese, so it should be that DJ himself calls the shots on how he is being portrayed, what details about him are included in the film, how the project is shaped and constructed etc. There are others involved too, key professionals, apart from DJ, who have worked alongside and with DJ, to make this beautiful work of art and advocacy.

As sort of cadence to this musing, I offer more examples from my own personal experience and practice too. I urge practitioners in the field of disability – not merely the arts, though the the arts is in focus here because this is my area of practice, but across all disciplines – to ponder the urgent need for a paradigm shift towards progress, and progress can only come when there is Disabled Leadership in the field of disability.

The BIG Anxiety Festival 2017 focuses on mental health and draws from the perspectives of artists with different disabilities. Disabled leadership is practised yet again – Nothing About Us Without Us. Instead of being simply ‘showcased’ like circus performers following the extrinsic dictates, artists with disabilities led the way in decision making, crafting, directing and presenting their own perspectives.

I was one of the artists in the BIG Anxiety, exhibiting two of my works:

Clement Space in the City 2017 and An Olfactory Map of Sydney 2017.

Click on above titles to go to the BIG Anxiety programme pages, and more details, photographs etc can be found in these links below:

Photos from Clement Space in the City 2017.

Videos from An Olfactory Map of Sydney 2017.

Another work in which I was actively involved was Snoösphere – a fascinating multi-sensory, responsive environment based on and inspired by autistic sensory features and autistic sensory experiences. More information, photos, videos and further links here and here. Watch the ABC Lateline television feature here.

If you want to talk more about Disabled Leadership and how your practice can benefit from a progressive shift in paradigm and strategic approach, please feel free to contact me.

(A huge thank you for the wonderful experience of working alongside and learning from festival director, Prof. Jill Bennett, fabulous collaborators Elle Knox and Lindsay Webb of Lull Studios and all colleagues and fellow artists in The BIG Anxiety!)