Author: jon

5 February, 2023  

Alia Alzougbi is a cultural strategist, artist, facilitator and Sync Associate working at the intersection of art and social and environmental justice. Her practise uses the arts to interrogate the fundamental causes of inequality and explore alternative modes of understanding the world and being in it.  Alia is Joint CEO of Shubbak, Europe’s largest festival of contemporary Arab arts and a partner for Sync Arabi alongside Art to Heart in Palestine.

A commercial flight from the UK to Jordan took less than five hours of our lives and, at least this time, we did not require assistance. Sarah and I were traveling in excitable bodies high on adrenaline and, having my so-much-more-than-an-access-support-worker, Shyama Persaud, with us meant that we could relax about worrying over long cues, lifting bags, finding food and drink and so much more that the disabled traveler usually has to contend with.

We had a good moan about the aircraft being so ill-equipped for the pain body (who on earth decided it was a good idea to model aircraft on a sardine tin?) but arriving to the warm welcome of our project manager extraordinaire, Aya Nabulsi, and an accessible hotel put all that behind us. 

Here we were, ready to deliver Sync Arabi — a disabled leadership intensive residential experience born out of the sweet entanglement of Shubbak, Sync Leadership and Art 2 Heart.

The next morning we awoke to the news that delegates from Palestine were caught by a crackdown from the far-right government of Israel. Roads leading in and out of the illegally-enclosed Occupied Territories were impenetrable. My imagination took on a bird’s eye view of taxis carrying our colleagues traversing grey lines of asphalt with potholes dotting those neglected essential arteries of mobility and, within those cars, artists not only disabled by their own societies for the divergence of their bodies from the so-called ‘norm’, but also disabled by a colonial project of land enclosure on a mass scale upheld by a sinister and corrupt world order. 

Six cars carrying five Deaf and Disabled artists and our colleague Suha from Art 2 Heart,
Wind their way through impenetrable roads,
Reversing and tentatively traversing another route,
finding that blocked;
reversing and tentatively traversing another,
and another.

For those of us waiting in Amman, time was suspended. We needed to find a way to ensure the residential course went ahead. Could we deliver it as a hybrid event if they did not make it through? And if they did make it through, how could we best invite rest, ease and recovery? We got to work on scenario planning – if…, then….

Then, one by one, the Palestine colleagues arrived, not-a-little frazzled by their journeys, and yet so graceful in their greetings.

Alia Alzougbi

And then we saw Suha Khuffash. And the warm embraces that ensued were so much more than those of co-conspirators finally meeting in the same physical space after months of virtual planning. Ours were embraces laced with a sad elation that, in spite of the mobility rights of Palestinians remaining unhonoured, there was hope still that they may come through, coupled with a defiance that our non-normative bodies would ultimately coalesce through of the multiple barriers we face. Hope grew in our brittle bones and attriting nerves and muscles. 

Then, one by one, the Palestine colleagues arrived, not-a-little frazzled by their journeys, and yet so graceful in their greetings. Jordan is less than 200km away from Palestine, and yet some of our colleagues’ journeys took 12 hours in comparison to our measly five from the UK which is over 3500km distant. Access becomes a dizzying point of crisis when geo-politics and disability intersect.

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In a windowless hall with a bright red and yellow carpet crowned by an art deco chandelier, we gathered with our wheelchairs, note-takers, text-to-speech tech, braille books, sign language interpreters, walking sticks and aids and all manner of support we could fathom to thrive in a world that was neither built by or for us. And so, as in so many gatherings of Deaf, Disabled and Neurodivergent, we did what it takes to ensure that this space would be accessible.

The next five days were a heady immersion in Sync Leadership tools and theory, meditations to lean closer into ourselves and each other, and affirmations to find our collective courage. Sometimes consensus settled in. Other times it was clear how disagreeing well made us so much more than the sum of our parts, because there was so much more than a common cause that bound us. There was real intrigue and a genuine desire to explore how Deaf and Disabled bodies, in all their variety, can be the sites of true societal transformation.  

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And perhaps some of the most radical moments we shared were those of joy and laughter — that in spite of it all, we made it together. Etched in every sinew of my body is that first explosion of laughter when the uncensored Sharihan exclaimed, after an admittedly too-long introduction from Sarah and myself, ‘Uff! I was wondering when you two would shut up already!’

And when Jeries, on the bus journey to our welcome dinner, commented on his delight that there was not the hint of a smell of another man in the cohort;
And when we heard of the surreptitious after-hours blind-led tours of Amman which Rawan had been organising for the group;
And when Safaa and Shaima’s laughter reverberated through an overly-sanitised hotel lobby as they skidded in their wheelchairs in an impromptu race to their coaching sessions;
And when the ever-resourceful Hala rose to the challenge of finding the only fully accessible cafe in Amman for our goodbye shisha;
And when Yara and Diana were reduced to tears of laughter upon finding a common language that traversed Deafness and Blindness on our last night together (and I tell you, the rest of us so wanted to be let in on that language of pleasure activism).

I cannot speak for the others, but I certainly left Sync Arabi giddy with the power of a collective dream.

Alia Alzougbi

There is a rich countercultural spirit that the transnational Deaf, Disabled and Neurdivergent community can offer if only our right to resources were not repeatedly robbed from us. The solution-finding creative intelligence of non-conformity born out of circumstance is a well of wealth our problem-ridden world can only benefit from. The more obstacles that are placed before the realisation of that dream, the more we all lose out, all of us. But let that not be the reason; even if folk had nothing to offer, let us move away from the ever-extractive capitalism-serving constructions of a life worth living, and the lies. The lies that our worth is in our productive capacity, the pace at which we live and work, the number of outputs we are able to spit out. 

On the last day of the residential experience we spoke of courage, and out of that came a call to love from the cohort of eight – to trust, to be generous and to uphold kindness even through fury over injustice. This is where the revolution lives. In a world where ubiquitous ideas around ableism are so easily internalised, where bodies that digress from constructed normality are regarded with suspicion, even repulsion, the call to love is the most radical, revolutionary thing any of us can do. 

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Postscript – At the raw intersection of disability and mobility justice in the fold of environmental catastrophe

12 February 2023

In the early hours of the morning after we returned to the UK, a devastating earthquake struck the region, with Gazintiep as the epicentre, wreaking unimaginable death and destruction in both Turkey and Syria, and with strong tremors felt in Lebanon, Palestine and Jordan. As bodies, dead and alive, continue to be pulled out from underneath the rubble, the realisation comes that disabled bodies were inevitably slower, less likely to survive. 

With the Earth increasingly kicking back at the rapacious invasion of its resources for profit, the body that cannot run or traverse physical obstacles, cannot see where it is going, cannot take an audio cue of incoming threat, is significantly less likely to survive. We become reliant on those who love us to carry us, to run alongside us, to invent all manner of ways to speed up an inevitably slower escape. We are reminded that our very survival is deeply entwined with the health and wellbeing of the Earth, our only home. We are reminded, if nothing else, that for the sake of our disabled loved ones – our elderly parents, our babies and toddlers – we must stand up to the corporate greed driving environmental destruction on a mass scale.

More about Alia:

Alia has worked with national and international organisations, including the National Theatre and the British Council, to create critical encounters in education and the arts towards collective liberation. She has curated a range of interventions and creative disruptions, from local corner shops to world-renowned museums. Alia is a Chevening Scholar, a Clore Fellow, and a Fellow of the Royal Society of Arts, and volunteers as a coach and mentor with those experiencing reduced access to opportunities in the cultural and creative industries. She is a recipient of the Writer’s Guild Olwen Wymark Award for the encouragement of new writing in 2019 and was nominated for a BAFTA Scotland in 2008.

In the second SYNC Leadership online program 22 session, the cohort were asked to find a metaphor for their leadership. Choosing the metaphor of a sock, Jodee Mundy thought about how a sock can mean many things.  A lost sock, to find your pair, pull your socks up, to shed your skin and so forth.

Prelude
Created inside my mother
Growing within her peaceful womb
Movements stir, shake and vibrate
my all-Deaf family signing

S-kin
Born into two worlds
I’m different from my kin,
Even though I’m one of them
I have hearing skin

Alternate Realities
Growing up coda
Navigating
Sight and sound,
Deaf culture
Hearing culture
Auslan
English
Ability
Disability
Exclusion
Inclusion
Ignorance
Privilege
So binary
yet profound

Symbiotic Reckoning
My family and I share the same goal, “That we are equal.”
I interpret for my mother,
Side-by-side advocating for social justice
For the human rights of others

Professionalism
My role evolved from family
Into a professional ally
I interpreted and advocated with many
For decades did we try,
did we try!

Forty years
Interpreting, advocacy, bilingualism,
Explaining, educating, consulting,
Directing, performing, explaining
Mentoring, writing, volunteering,
Fund raising, leading, programming
Access and Inclusion…ummm
Where do we even begin…?

Therapy
40 years worth of therapy,
Guilt for being of ‘them’
Grief, anger, depression
The status quo declining
Access and Inclusion

Diagnosis
Like a sock
Evolving from inside
To the outside
To the inside again
Three years ago
My sock revealed new skin
“You have Stage Four cancer”
doctors tell me
“It’s incurable” they say.
“Not sure how long you’ve got”
“Better take it day-by-day”

Farewell
Farewell to my innocence
Goodbye to my able-bodied life
This woman is facing terminal illness
With a possible end quite nearer in sight

Motherhood
With pain, fear, grief
As my new daily grind,
I spent 2020 in lockdown
loving my new baby
with an unwell body and mind

Skin
And yet, despite my prognosis
Three years on
A new freedom’s been found
From within
From outside
And inside again
I’m finally in my skin

VIP
I’m disabled too
Like all of my family
Finally!
No longer an insider/outsider
I’m part of the club
It’s new to me,
Yet familiar
I feel vulnerable yet strong

Light bulb moment
I understood access and inclusion
But wow,
Ableism is next level…

When you’re…
When you’re paid less than your entire team
Even though you’re the disabled leader

Or when your boss prefers your GP’s opinion
And chooses not to listen to you

When the chemist counts your monthly opioids
To check you aren’t addicted

When you have to state your UR number each week
to the hospital staff who know you

The monthly scans, quarterly reviews,
The speed the world moves at
The daily naps, the breathless walks
It’s bloody hard to keep up
I’ll tell you that…

When you’re advocating for your life to parliament
In the hope they’ll fund your cancer plight

When you’re trying to fit in
Even though you have given them all of your worth

When you talk to them about a wage increase
They say “sorry but that’s the way it is”
“It’s not our fault you can’t keep up”
“We’re real sorry about your diagnosis,
gee that must be real tough.”

When you have to bite your tongue
Hide your tears
Hold your head up high
And explain”
That this is the best they’ll get
And that you’re worth it time and time again”

Conclusion (at least for now)

Balancing life as a disabled woman and mother
As disabled leader and artist

My breathing, my capacity, my energy
It’s a fine line to tread…
Yet the deeper these skin folds my socks hold
The more and more I feel connected.

I’ll continue to pull my socks up,
Create
Gently lead
Not give up,
Stand on the shoulders of my disabled family
All three generations of us
When the going gets tough

Jodee Mundy OAM is a Melbourne based interdisciplinary artist, festival director, activist and cultural leader. A heritage signer of Australian Sign Language, she grew up as the only person who hears in her all-Deaf family. In November 2019, Jodee was diagnosed with a terminal cancer when she was thirty- five weeks pregnant. Shortly after, she went into lockdown for almost two years. With a survivorship of three years Jodee lives from treatment to treatment depending on ground-breaking cancer treatments. In 2020, Jodee was awarded an Order of Australia Medal for her service to the performing arts.
www.jodeemundy.com

Designing creative space for people with sensory disabilities* and my internalised ableism.

I am one of approximately five hundred people worldwide diagnosed with the autoimmune disease Cogan’s Syndrome after a four-year search. While I was losing my hearing multiple specialists dismissed my symptoms as mental illness. Because it’s rare, there is little ongoing research, so finding medical support is arduous. Cogan’s involves vascular inflammation of the ears, eyes and vestibular system. Over time this results in deafness, vertigo and for some also vision loss.

Chronic illness presents a diminished state of normalness of human perfection. It takes time, but when we embrace our disability, we embrace the innate understanding of being fully human because there is nothing natural about human perfection. I believe our obsession with emulating the norm via our ableism comes from a culture that commodifies everything with promises of perfect health, beauty, popularity and happiness. Personally, this belief system, on top of daily disability social trauma, inevitably makes me fall into the trap of deaf shame, ADHD shame and rare-chronic-disease-shame.

In the Sync program, I was excited to share an online disability arts space and see radical acceptance of disabilities in action.

With hearing and vision loss, the medical industry is our first and often only reference for our ongoing disablement. Though we may need treatment to slow the loss, it’s equally essential to develop radical self-acceptance, purpose and community. For disabled individuals to thrive, we must build disability pride in conjunction with our other pride identities like feminism and find our communities.

“Without community, there is no liberation.“* Lourdes’s proposal of community-in-action is evident in the collaborative community of ceramic production. Everyday shared space, equipment, tools, skills, and machinery are common and celebrated. In the Sync program, I was excited to share an online disability arts space and see radical acceptance of disabilities in action.

Before my deafness, I witnessed social oppression as a child of gay parents who campaigned for women’s rights. I didn’t understand why my two mothers could not marry or be listed as next of kin at hospital or why they missed out on 45 years of wedding anniversaries. I heard them telling themselves that a wedding was unimportant, and the piece of paper didn’t matter; this was how my family internalised homophobia.

At the end of 2017, there was a referendum in Australia on legalising gay marriage. Before my mother died, she was devastated when she saw the mixed results of the 60/40 ‘yes vote’ referendum mapped out in our suburbs. As my mother was dying from Leukaemia, we had to get their permission for marriage rushed through the bureaucratic channels. They had two days in the hospital for palliative care, and she was gone. We counted ourselves as lucky as their marriage ceremony was one of the best moments of our lives.

The insight I gained from this experience was how can we tell the difference between our intrinsic wants and needs and internalised oppression if something has always been prohibited? Seeing the self-protective act of denial in action was revealing, as it showed how we internalise sexism, homophobia, classism, racism, transphobia and ableism.

When my son was a baby, he couldn’t sleep for more than two hours and bashed his head repeatedly. Paediatricians had low expectations, and after five years, he was diagnosed with Autism, RL sleep disorder and later ADHD and dysgraphia. Being a carer for my neurodiverse son taught me that focusing on your “deficits” to normativity is toxic and unproductive (a lot of ABA therapy is now seen as abusive by many Autistic adults). Watching my son, who now plays in a jazz band and is studying engineering, I learned that people with Autism and ADHD are superb specialists and living with a disability is about adaption and innovation.

We habitually conceal disabilities to pass as normative so that we don’t make other people uncomfortable, but this discomfort includes ourselves. When we can no longer pass as normative, our unconscious stigma directs us to withdraw for safety or endure daily disability “outings”. But we can use this to develop disability pride. Only a tiny proportion of people in the world that have a disability identify themselves as disabled due to stigma. And our confirmation bias includes ableist behaviours such as not socialising with other disabled people.

Watching my son, who now plays in a jazz band and is studying engineering, I learned that people with Autism and ADHD are superb specialists and living with a disability is about adaption and innovation.

For myself, the cumulative exhaustion of pandemic ableism caused me to withdraw from my friendship groups after the combined rare-disease medical ableism and daily deaf communication barriers with lip reading and masks. Ableism often comes from the illusion of personal choice. We appear to choose to withdraw from social activities when in fact there may have been a difficulty communicating in crowds and immunosuppressant vulnerability during Covid.

My approach to art it is much like a science experiment. While training in ceramics during my illness, I fell passionately in love with the chemical reactions in ceramic glazing. Now I want to experiment, collaborate with my and other people’s and artists’ experiences of being sensory disabled.

The Sync Program has given me the clarity and strength to move forwards and great tools to understand my decision-making process and the sense of worthiness to ask for help. It has allowed me to think big and see what’s possible—using my technical knowledge in ceramics to build an inclusive, collaborative environment for deaf and blind people—providing social connection through a cultural centre for both ceramics production and contemporary art collaborations as a place for disability creative excellence. I want to show people an example of what they could be capable of after, and during, the hearing and vision loss with community and empowerment.

Kirsty Collins, 2022

*Sensory disabilities refers to blind, deaf and the spectrum of deaf-blindness.

* Lorde, Audre. “The Master’s Tools Will Never Dismantle the Master’s House.” 1984. Sister Outsider: Essays and Speeches. Ed. Berkeley, CA: Crossing Press. 110-114. 2007. Print.

(One of the best speeches ever written!)

The wasted and the loser things, the broken and abused things, all these small things. The treasured and sacred things, the lost and the forsaken things… Small Things The Audreys

I remember when I first encountered the term “impostor syndrome”. I had accepted a role where it was my job to assess the cultural readiness of a community managed organisation as they prepared to embed a peer workforce. A peer worker and mental health advocate, this was the first time I had been recruited to a senior leadership position. In my first week, I was treated like a rock star, which completely shocked me. I was this shiny new thing that everyone was excited about. During one introductory conversation, the senior psychologist on our team, impressed at whatever it was that had just transpired in conversation, looked expectantly at me and asked, “what was the focus of your PhD?”

Embarrassed, I stumbled for half a second and averted my eyes, not wanting to see what might be reflected in his gaze as I delivered my response.

“I’m still trying to complete my undergraduate degree.”

Later that afternoon, I confessed my feelings of being miscast to a colleague on the very small team I had been embedded in. Her response was kind but misguided.

“You’re just struggling with impostor syndrome. We all feel that.”

I had spent the majority of the past 20 years desperately trying to prove on paper what had amounted to almost three degrees worth of accumulated multi-disciplinary academic study. I had almost completely exhausted my government allocated student loan limit. Every time I had come close to subject completion in any given semester, I had ended up in hospital, the legacy of a 15-year battle with chronic suicidal ideation, a lifetime of amassed complex trauma and arising psychosocial disability snapping at my heels. But that I had a head full of knowledge which could not be attested to by any post nominal conferment was only part of the problem.

Arts and leadership had always intertwined throughout my adolescence. A singer first, cultivating a hidden interest in writing before studies in theatre and later voice at university, I had also been involved in student leadership and had dedicated my youth to Girl Guides in my small town on the south coast of NSW. It was almost unavoidable that the confidence I displayed as I mastered the art of crafting my voice would draw the kind of attention that people would look up to in admiration.

I was ridiculed in the school playground, kids vocalising dramatised cadenzas as I passed by, but my music teachers would buoy my confidence and so I persisted. Performing one afternoon at an arts assembly, I left the stage with a sense of crescendo but as the applause began to die down, I could hear the latent booing from students until it was silenced by supervising teacher death stares. I retreated into the wings and fought back tears. As the dance troupe took their places on the stage while the MC tried to redirect the audience’s attention, one of the most popular girls in my year, clad in her black leotard and wispy golden tutu pulled me aside. Julie looked squarely into my widened eyes and whispered fiercely to me:

“You are the bravest person I know. I dance in a troupe, as part of a group where I can hide but you go out there and trust your voice all on your own. Never stop doing what you do. You inspire me.”

These early moments as an emerging artist and young leader collapsed in on themselves in late adolescence not long after my entry into university. My world was suddenly shattered by psychiatric diagnostic criteria and the intervening space of silence was amplified by compound sanist narratives. A life once full of promise was now regarded as futile, less than ordinary, even a source of concern as a shroud of life-limiting narratives were adopted by many, and a deep sense of failure, powerlessness and shame emerged.

“We’re not making any special concessions for you. Even if you are in hospital or dulled down by medications you don’t need due to misdiagnoses no-one will be willing to revisit until you are in your 40s. You are expected to earn your place in this world like everyone else.”

During the first lockdown in 2020, while the world was sleeping, in my own little corner, in my own little world, I dreamed. I wrote. Testing the range of my voice, I began to sing again. The degenerative deafness discovered at 16, had certainly taken a toll, with hearing aids useless to reconcile how I received and created sound. In the silence I determined to rely not on sound, but on resonance. I began to apply for work that aligned with my unarticulated education and aspirations. I began to pitch creative ideas. I didn’t care when rejections dropped into my inbox. I wanted a seat at the table, so I was determined to fashion one unique to my desires for the tables I hoped to pull it up to.

At a storytelling event I was to produce later in that year, our invited guest speaker dropped an Anais Nin quote into his speech that still reverberates through the powerlessness that had pervaded my life for more than 20 years.

“Life shrinks or expands in proportion to one’s courage.”

Deeper wrestling with this truth in relation to lived experience and disability arts leadership led from there into the office of the colleague who introduced me to the concept of impostor syndrome, and further into reflection on what creates limits and silence. In learning to harness this style of tenacity, I continued to find my way to tables that began to repeatedly affirm hope I had dared not believe were possible of exhuming from the rubble. I realised this journey could no longer be dismissed as a fluke, but I still felt unworthy.

In 2022, I was invited to become a contributor to the national mental health reform priorities. I now contribute consumer and lived experienced leadership perspectives in conversations that directly inform parliamentary considerations. I devised and contributed to lived experience-led arts-projects. I became immersed in on-the-job self-taught lessons in disability arts management, holding the line of artistic integrity against unwanted and unbidden external agendas. The journey across the past three years has led to publications, podcasting, acting, singing, editing, producing, directing, project management, advocacy, policy development, supervision, and even consumer academic contributions. The gift of being part of the Sync Australia 2022 cohort was the recognition of tools I already possessed but didn’t know I was allowed to name, claim, or celebrate.

While I had wholeheartedly rejected the notion of impostor syndrome, the soul destroying sanism and ableism accrued from years of being relegated to a mental health system and its wider social narratives that undermined any true hope of recovery was also silencing my ability to accept other’s recognition of what I have always naturally brought to any table I have found myself seated at. And herein lies the intersectional danger of adding the false dichotomy of impostor syndrome to the mix.

The awe and flailing I experienced as my work continued to be recognised as on par with professional actors, writers, theatre-makers, advocates, and leaders in a world still highly governed by “keep up or get out” principles, was a product of not internalized ableism, but rather is due to assumptions of equality over equity. The adaptive nature of our subject matter expertise, our neurodivergence, and our heightened ability to see beyond traditional pathways means that we do pick it up or even work it out for ourselves along the way, which then informs our own unique leadership styles. Cultures that demand productivity over workplace and social cohesion, ultimately silence the inclusivity they would otherwise argue that they champion.

People are still a largely unaware of what it is to navigate the environmental and attitudinal barriers that stand in our way sometimes on a daily or even moment-by-moment basis, to engage fully in our community as disabled and lived experience artists and leaders. If we are going to be serious about the social model of disability in the current Australian sociopolitical landscape, we must desist from activating politically correct practices spruiking statistical representations of diversity and instead focus on dismantling widely adopted cultural myths and outdated theories that continue to silence.

Voices brave enough to highlight discrimination, sometimes even through expressions of distress experienced as threat in the arising frequencies are an opportunity to attune ourselves not to the sound but the resonance.

When is an expression of resistance evidence of an individual failing society and where might it be an invitation to examine further dismantling structural inequity in leadership contexts?

This is a question that hums through my mind and calcifying inner ear bones. I may not have the answers, but I finally understand that the product of sitting with this discomfort has become a calling that I can no longer hide from or push against. I may not hear what others hear but the uniqueness of what I do hear, leads me to pepper my worlds with curious questions. And what I receive in feedback, confirmation and even defensiveness keeps me attentive to the humbling truth that in learning to trust the feeling of the frequencies, we might truly be able find harmonies that modulate dissonance to bliss.

Written on ancestral First Nations lands. I pay my respects to elders past, present and emerging. Sovereignty was never ceded. Always was, always will be Aboriginal land.

The Spark.

My disability gave me the ability to find my purpose in life. 

Since a young boy I have always smiled and never complained or felt limited by my disability. However, at birth, I was diagnosed with Talipes Equinovarus (Clubfeet) and at the age of twelve diagnosed with Legg-Calve-Perthes (Perthes) and this disease led to chronic Osteoarthritis in adulthood.

Both ankles fused with no calve muscle development; I looked half-goat, half-man with skinny legs.

My first operation for my Clubfeet was at twelve hours old, freshly Caesarean-sectioned out of the womb onto the chopping block. Each leg is adorned with asymmetrical scars, metal pins and plasters. Both ankles fused with no calve muscle development; I looked half-goat, half-man with skinny legs. I found kindred to the mythical character Pan, a regular guy with goat-like feet who enjoyed music and the company of nymphs. 

This correction and fusion of my ankles occurred in many hospitals locally and interstate. I even stayed in a hospital in Canberra for six months without friends or family. 

Besides having a supportive family, friends and artistic collaborators throughout my life, a big shout goes to my informal guide and mentor Dr Stevenson, a fantastic British Orthopaedic surgeon. Each visit he would kindly say, ‘use your brain, be artistic. These legs aren’t for running or dancing.’ His guidance never created an obstacle to my disability, and my clear limitations made purpose, focus and freedom in my life. My stoicism forced me to pursue my musical purpose of creating a soundtrack for others to move and dance.

The Flame.

My life chapter of Legg-Calve-Perthes Disease and its chronic Osteoarthritis has ended this year with my recent total hip replacement. This surgery has been life-changing as the thirty-two-year chapter of living with pain has ceased. While on the waiting list, I chose to keep a smile similar to my childhood self and create as prolifically as humanly possible in my musical and artistic career, in truth, as a distraction from the constant pain of Osteoarthritis.

I used stoicism as a tool for coping with pain. The famous stoic Marcus Aurelius quote, “Our actions may be impeded… but there can be no impeding our intentions or dispositions. Because we can accommodate and adapt. The mind adapts and converts to its purposes the obstacle to our acting. The impediment to action advances action. What stands in the way becomes the way.”

Post-recovery, I am now pain-free. The lack of consistent gnawing pain has left me more peaceful and open to serving the community with greater clarity. Holding space for people has become easier as my inner self is now calm. This newfound quiet will flow into my coaching style as I support and listen to people, being with them on their terms.

The lack of consistent gnawing pain has left me more peaceful and open to serving the community with greater clarity.

Coinciding with this sea change, I had a profound shift to minimalism. I began to feel the cravings to reclaim physical space and mental bandwidth; in this process, I saw myself selling many things and my identity attached to those items. This process, paired with the want for peace post-op, was of the utmost importance to me. This energy clearing has opened me to new personal and professional growth opportunities.

The Fire.

As I discovered in the recent Sync Leadership experience, I resonated with the mythical Phoenix. This bird of rebirth became my metaphor during our coaching sessions; how I naturally move through different renewal cycles with my body, mind and artistic practice. Over my quarter-of-a-century career in the arts, I have seen myself evolve in this way at least six times, burning up outdated beliefs, practices and identities in pursuing knowledge, stoicism and mastery of my craft further. 

Sync landed in my life at the crux of one of these five-year cycles. I always feel like a work in progress, a wet canvas, an unfinished symphony. By this, I mean that I don’t see my life as complete at any point, outcome independent in many ways. Open to new experiences and learning from the gifts within each cycle. The serendipity of the Sync Leadership program and its learnings and the time to reflect has pivoted me towards my leadership potential, critically invigorating my development to serve better the disability and broader community with greater potency and compassion. 

The Phoenix is now renewed, shedding its old beliefs and limitations, ready to share and coach with empathy and dignity. Thank you, Sync, for this life-changing experience.

Some two hours after completing Sync and saying our collective ‘goodbyes – but not forgotten,’ a lingering thought prevails. Leadership comes from a place of loving oneself deeply and inviting others in to participate…  is what I wasn’t expecting.

Sync led us through various tasks including leadership styles, approaches, and traits, but for me loving myself in this context makes me feel like I’m stripped bare. It’s raw – and this course makes you sit with these feelings, whether reflections and ponderings, or just the naked truth behind your motivations. You are worth more than you allow yourself to be. 

Sync is about unlocking one’s own process and potential and defining one’s practice, culminating in a personal metaphor symbolising values and process. The program helps participants to identify and sharpen one’s tools, to disrupt and break down internalised ableism and to birth a leadership outcome. 

In terms of uncovering our shadows or limitations, I discovered that I often publicly state I am a person with disability, but I don’t preach it and I certainly have not challenged the status quo enough around me to provide my access needs on my terms. I quickly realised that I have been a co-pilot to my own discrimination and this revelation is quite shocking and actually quite sad. I have denied others to accept me because I haven’t authentically owned my own needs and advocated for them. Wow, just wow. How did I not see the full extent of this until now?

I believe the answer lies in social conditioning and as people with disabilities, we are experts in our own military style self-defence systems, complete with childhood as our training ground. If one hasn’t at least installed a verbal cannon by the onset of school, you could expect the snipers to check in for the stock standard name calling. And if that’s still getting through the force field, then it’s the specialty tools like shock tactics, camouflage and shape shifting just for special effect. The more these tools are used, the more one is forced to blend in through subterfuge because over time, the constant battle of having to fight for one’s own dignity over many years is wearing. However, with more advocates going public about being disabled, the constant exhaustion of emotional labour given freely from many fierce advocates has enabled pockets of light to break through and push for systems of change now that these critical conversations are in the public domain.

Sync Australia is a vehicle for starting these dialogues one person at a time. It’s transformative and it plants the seeds to encourage all of us to openly question each other on what is happening now and what could lie ahead with aspiration and curiosity, the panacea and the zeitgeist. 

These conversations happen in a virtual room and participants dial in from different time zones across the world. Each session is designed to gently dismantle these defence systems and invite you to be your authentic self, to unshackle oneself from the usual normative behaviours, reveal our cultural wounds and share learnings, wins and successes. Small acts of revolution are discovered in moments of kindness. Sync is safe, nourishing and familiar. It beckons you to relax, deeply breathe in and exhale out the stigma and self-deception. 

Sync is the perfect program for mid-career creatives to aim and ascend to leadership positions in Australia. There is a distinct lack of disabled representation in public positions and at the helm of arts organisations due to limited or zero opportunities for succession planning and career progression. It’s possibly the product of a background of competition, exclusivity and a long history of disconnection between many of the arts organisations. This is a result of an over stretched arts eco-system being expected to deliver big on small amounts of funding. It’s got to change; the community and disabled arts culture utilises the power of the arts to save lives – why isn’t there more investment for this? My Sync goal is slowly birthing – my vision of wanting to develop my own non-profit was re-ignited again – another surprise.

The door is now open, but where will it lead? We leave the group with the last provocation of “What’s next?” Small gods exist in undiscovered places when we commit to loving ourselves. This affords us the opportunity to develop our skills and tools, to challenge and improve ourselves but to break through our individual constructs and dismantle those of our peers. We then are ready to take a leap of faith and be the change we want to be for ourselves and in the context of a broader, complex cultural landscape. 

You can connect with Harmonie Downes via LinkedIn: https://www.linkedin.com/in/harmonie-downes/

Ice metaphor information:

Why I chose “ice” as a metaphor in the symbol of an iceberg: It is so embedded in our language in terms of what we can see and what we can’t see. The iceberg represents what’s above and what’s below. It is about what, when, why and how we show ourselves. The 20 percent of what’s above, is in the public-facing aspect when delivering an event, performance or creative outcome. Below is the 80 percent that includes all of the tumultuous churning, the thought process, the unseen. Everything that no‑one knows what you have gone through to deliver – it can be resource intensive. What we do ‘back of house’ depends on how we shape our projects. It’s driven by the environment. Can it form; will it disperse? How will we manage to skate on thin ice when things are shifting and shaping? Will the project collapse or will it be delivered? It is a mix of these ingredients to support the sustainability of your work to take form which takes time, careful consideration and problem-solving skills. It can be an incredibly beautiful experience, but painful just as an ice burn can be. It can be refreshing or isolating, but absolutely transformative when it all comes together. Process is key to everything.

Kelsie Action has dual nationality and with the programme delivered virtually for the first time, Kelsie was able to secure one of the 2 places made available to applicants living beyond Ontario from her current base in London, UK.  Kelsie shares the impact that Sync has had in allowing those taking part to rethink unhelpful narratives as an essential and empowering  leadership skill.

Chimamanda Ngozi Adichie speaks in her TED talk about the danger of the single story. And while Adichie has fallen into the dangers she describes when it comes to speaking about the stories and lives of trans women, I think the idea of the single story is useful. The single story is when only one story is told about a group of people, and usually told by people outside that group. The danger of the single story is that it limits the ways people can be, and grow to the story.

I think about the dangers of the single story a lot. I think about it in art: that disability arts exists as a corrective to the single story of disability as tragedy and suffering that should be cured or eliminated by medicine. I think about it in access: the idea that access is an ongoing, changing relationship, not a Universal Design that you can get right, and then invest no more effort in. Every part of my work in disability arts and access is about undoing the dangers of the single story.

I think about the dangers of the single story a lot because I find the single story so seductive. It’s so hard to imagine other ways of doing things. And the feeling of rightness, of righteousness, is very compelling. But the single story keeps you stuck in a particular time and place and a particular way of being.

The events of my life this year – leaving Edmonton and moving to London (England) – were about gaining access to a myriad of new structures, models and stories of disability arts. My understanding of how disability arts could exist and could serve disabled people expanded. My understandings of access expanded. I gained new tools and new possibilities to try. New stories.

Sync was a very similar experience. I realized that I had been working with old understandings and an old story of leadership that did not serve me in my old life, does not serve me now, and will not serve me in the future. Sync introduced me to the idea of leadership models. In the past, I thought the only way I could be a leader was through the model of the servant leader. While this leadership model will work for some people, it left me feeling exhausted and like I could not say no to requests that drained me.

Mia Mingus writes about how ableism encourages her to always be “erasing my edges and redrawing them” and how knowing your limits in this world is so very difficult. It is very hard for me know my limits, to know where I should stop. Thinking the way I should be a leader was through endless giving made knowing my limits even more difficult.

Through Sync, I realized there were many, many ways of being a leader and many stories I could tell about myself. I also learned to think critically and compassionately about crafting the stories I am currently telling about myself and my leadership journey. I’m not quite sure what model of leadership I want to inhabit now. I am still crafting the story I am telling about myself. But I know that story can be something that I consciously choose and that can change if it is not serving me.

Learning that there were many stories is the gift disability arts has given me. Learning there are many leadership stories, and that I can change the story, is the gift Sync gave me.

Edges

Jenelle Rouse has just this month received her doctorate in applied linguistics and has shifted her trajectory in new and exciting ways.  Her Sync Think piece focuses on the courage it has taken for her to move from the shadows into the light in a new tack, she’ll be developing her arts concept Multi-Lens in the months ahead with the learning from Sync.

I have always been fascinated by the word ‘transformation’ and what it takes to transform. I have never been shy of carpe diem, or seizing the day. Yet, still the idea of leaving a known place to embark on a new unknown path up until now has felt frightening. While thinking about the Johari window model, shared with us as part of Sync, my reluctance to tread into unknown territory has meant that I have remained hidden in some aspects of my life. What if I didn’t have the skill or resources to move forward effectively?

With encouragement from a colleague, I applied and secured one of eight places in the new Sync Leadership Canada Programme. I took part in in a week-long, online, intensive session with in-depth coaching one-to-ones. The programme gave me the opportunity to connect with other leaders and facilitators who were like me, who had embraced individuality, and all of us with different ways of working through the siege of medical and societal barriers.

Although there was no in-person interaction amongst us, I felt positivity and a high level of energy. An authentic connection, engagement, openness and encouragement at every single online session. I took a pause and listened to words they used during our discussions through a real-time captioner and American Sign Language (ASL) interpreters. While internalising words, I captured their meaning linking ideas, strategies, models, and metaphors, and that led me to think about my past, present and future.

My experience in the session led me to seriously reflect and delve deep into my desire and dreams. I was figuring out my purpose as a Black Deaf person with many roles, as an artist, educator and scholar. I learned more and more about who I am, the choices I make, and why, and I started to formulate goal-oriented actions to put myself in the best position possible to lead. Whilst listening to each leaders’ story, I looked at other role models in my life as examples of a type of leadership role I want to be – and what mission I have for my arts project, Multi-Lens.

Sync made me feel at ease to share my thoughts naturally in ASL and skill-fully supported me to reveal the hidden areas that I had not allowed myself to tap into – until now. The experience of collaboration, planning, creating and sharing whilst being rewarded with a lot of effective tools inspired me to have courage.

With courage as my friend, I shared a short stop-frame animation I made in response to one of the Sync challenges we were set. The film was an alternative version of a model showing my next steps showing a germinating plant, morphing and moving into something new. My very own transformation leadership journey.

After the intensive week of leadership learning, I realised I will not go on to unknown areas alone. I have a group of incredible, like-minded, and motivated leaders within Sync and outside of Sync too, who will back me up as I go on to grow and make innovatory changes.

My next step is to be comfortable with the idea of publicising Multi-Lens on a regular basis. In doing so, I will regularly post videos and images of ‘sneak peeks’ to guide the public as they become more familiar with the purpose behind the implementation of Multi-Lens.

You can follow Jenelle’s next moves on social media

Instagram: dancer.multi.lens.existence

Facebook: Jenelle Rouse