For Each Of Us; Gaps between professional advocacy and private experience

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Disability Arts Online’s latest Guest Editor is choreographer, dancer and writer Alexandrina Hemsley, who kicks of their editorship with an opinion piece about the contradictions she faces in navigating the contemporary dance scene and offers up gentle solidarity.

Woman running across a landscape

4562.C.E. From Bounty Bars and Oreo Cookies Photo Series Alexandrina Hemsley in collaboration with Kataryzyna Perlak

I come to this guest editorship articulating some of my long term mental health vulnerabilities and their impact on my daily life and creative practice more boldly. I am also currently adjusting to life with the ongoing effects of post-concussion syndrome. I am right in the middle of experiencing life with daily physical pain which weaves its way through (and often intensifies) the inner dialogues and access needs of my mental health. The experiences are bringing my emotional health into a different kind of focus; questioning the ways in which I have managed my mental health conditions so far amidst my work as a dance artist.

So, I am hoping to write through all this; embracing my naivety and my mistakes. Invisible disabilities feel like they oscillate between the potential agency of being unseen and the painful realisation of being unseen. This flickering of how we present or relate to our surroundings can give more choice over disclosing our conditions – not everyone immediately knows I am disabled and there is a protective privacy in that. On days where there aren’t physical manifestations of my health conditions, I am afforded a degree of choice in choosing when/how to identify. But being unseen can also feed shame and the ability to hide/disregard ourselves. These tumultuous contradictions are currently eroding the sustainability of my arts practice.

For each of us who show up

For each of us who refuse

For each of us working

For each of us unable to work

I have been trying to suppress my disabilities and unsurprisingly, failing. Like many others, I often shrink the reality of my disabilities. I worry that if I’m having a good day or am in high spirits, someone might come away from an encounter with me thinking, ‘Well, they are fine’. This fear can be particularly awkward if I have asked them (a dance institution facing very real cuts to their annual budgets) for money or support.

Some days, I am embarrassed to identify as disabled and don’t know if I am allowed to identify as disabled. This makes aspects of me so uncomfortable because it’s an internalised conditioning around what society suggests living with disabilities is like; hard and undesirable. And I would say yes, it is hard. Hard but not shameful.

For each of us speaking up

For each of us wrestling with our own tongues

For each of us tending to our wounds in silence

For each of us dealing with our trauma through noise

For each of us who have had to change friendship groups

For each of us who find going into institutions a buzzkill

I try to often to chameleon my way out of my own health needs but my body knows. Often shouting loudly with an ‘I told you so’ fatigue. Or, ‘You stayed standing through a conversation when you needed to sit down so now…oblivion’. Or, my personal favourite, ‘You overcommitted your time/energy/distance you could travel and so welcome to two hours of an apocalypse’.

My apocalypses are often in private and reveal the gaps between my professional advocacy and personal life. They slice through my body and its surroundings. At times I have integrity in my actions and at other times, the shaming and overlapping experiences of racism, misogyny, abuse and ableism, crumple my skin like paper.

Woman looking at camera

Still from ‘ Sword and Shield. Down. Down. Both of Them Down by Alexandrina Hemsley

I experience dancing, choreographing and writing as a balancing act of making visible multiple positions. There is potential within these creative acts to carve out a place where I can vocalise experiences by speaking on my own terms rather than have the words bubble up (sometimes softly, sometimes angrily) but perpetually caught between tongue and lips. Mouth shut. Sometimes stunned shut. Sometimes stunned open.

At one point, the concerns of my creative practice could be characterised as white cis able-bodied men and women turning and walking away from me while I was speaking to them about systematic oppression. Or asking to touch my hair. Or just touching anywhere.

For each of us who have had to withdraw in one way or another from an arts organisation or activity because of previous harm

For each of us whose bodies have been critiqued

For each of us who still show up to work, knowing that we face or have faced racism, ableism, sexual harassment and/or assault by those in the same room and/or building

For each of us who reply to emails from organisations who know about instances of racism, ableism, sexual harassment and abuse but still promote work made by the perpetrators

For each of us who apply to funding bodies who also fund and support perpetrators of racism, ableism, sexual harassment and abuse

For each of us who did not move out of the city where our experiences of these violences took place

For each of us who did move out of the city where our experiences these violences took place

Courage and advocacy are hard to hold onto when being dismissed is so visceral. Also of interest to me is that it feels like it takes both a lifetime and an instant for the modes of dismissal to become internalised. Suddenly, I have nothing to say.

Digital image of woman's face

Black Holes by Seke Chimutengwende and Alexandrina Hemsley. Image: Jack Barraclough

I’m believing my symptoms more now but I still catch myself underplaying them or at the very least tidying them up. When writing my little blurb for Disability Arts Online, I wrote that ‘the past seven years have been a time of coming to terms with and articulating my hidden disabilities and their impact on my arts practice’ A few days later I thought to myself, ‘Where did the number 7 come from?’ It isn’t true. I had minimised or made my experiences more palatable. I had downsized them and minimised the space they have taken up. Their presence in my life. I had engaged in an internalised marginalisation of my own experiences

For each of us trying to balance a community’s accountability and responsibility with our own complicity

I know now that such a random number was because I couldn’t face that I’d experienced body dysmorphia symptoms and depression since the age of 11. Going to a school in the English countryside where I was one of two people of colour certainly compounded this. In my adult life, various other diagnoses have haunted me. So, 22 years and counting is the reality of my experience of invisible disabilities and marginalisation.

And so, I’m still here but not as I was. I’ve been trying to bend into the shape of work. Trying to be ok with the way dance disguises its problems around inclusion often, through a misplaced sense of neutrality and liberal politics. Instead of frank conversations and change, marginalised artists often encounter oppressive, opaque power dynamics, bureaucracy and an appetite for the work/products to have the marketable, sexy politics without collaboratively holding and working to undo the politics embedded in the creative process/at the pre-show bars/ in job and funding applications.

Even as I write my bones are tired of forming language. I think in part because one is so often caught trying to describe and justify experiences and encountering the confines of language’s ability to do so. Thirty minutes before drafting this I was in tears in bed because of physical pain, in emotional distress feeling like I’ve wasted time, fed up of my unstable income and my invisible, inconsistent and unpredictable symptoms.  But, I have support. I put the notebook down – thank goodness! I came back the writing this article two weeks later. Slow time is working for me. Employers are supportive.

My experience of body dysmorphia can be like spending days or weeks at a time without internal and skin-surface reference points. My face is a vacant ocean-vacuum and parts of my body disgusting in ways that I feel as both real and not real. It can be excruciating to have a conversation about an arts project – advocating for myself and often others creative practices – while my mind is rapidly clawing at all the versions of myself who dared to get out of bed. My dysmorphia is child-like and hurt. In holding it, I hold the contradictions of championing embodied knowledge, politics and expression while all embodied knowledge whirlwinds against me.

And so as I collect and ride my fragments, I turn to dance and I turn to writing.