Representing and Re-Presenting

On my word(s) for wheeling through 2026

Hullo my lovely readers

A content note for general discussion of, various forms of marginalisations and oppressions, the ways they intersect – and the structures that uphold them – along with their individual and collective impacts on identity, autonomy and agency. Also for (less detailed) references to state control and violence; to brain injury resulting from prematurity; and to bereavement and grief. But all framed within and alongside the power and importance of community.

As I shared in Wednesday’s letter, I’m still in my adjustment period, both to the shift from 2025 to 2026 and the still relatively recent changes to my wheelchair seating system.

Since Wednesday, though, I’ve realised that where I am right now (and, indeed, the things that have been happening over the past month or so) are actually quite apt for this time of year. Not simply in terms of it being (in the Northern Hemisphere) winter and hibernation time, or the fact that there are actually many calendars by which we humans mark the passage of time’s construct. All of those things of course remain true. But, on a more personal level, I’ve registered that I’m still in the gap between when I was born and when I was supposed to be.

What, last year, I wrote about as my “brain space”.

The time when, as an extremely premature baby (for my era, and still now, although even earlier births are quite common today) I wasn’t yet supposed to exist. And the time when, because I did exist, my body and brain were adjusting to the impacts of that existence, including the brain injury I sustained as a result of my early arrival.

These days, it’s a time I use to adjust to where I am now.

And, as you know, this one has already been quite the ride, to use an appropriately wheely metaphor.

Even before we got to 2026 and what is somehow inexplicably already (yet, simultaneously, only) eleven days into January.

Because so much has happened, both for me and our wider (beautiful yet beleaguered, beleaguered yet beautiful) world.

So much is happening.

Hurt and harm and happiness and hope.

Grief and joy once again doing their intricately intertwined dance.

It’s overwhelming.

But, amidst that overwhelm, in my commitment to resitting and resetting, I’ve been sitting with the myriad of emotions. Because, as Desireé B. Stephens powerfully reminds:

Life is moving faster than the human nervous system can metabolise.

Faster than meaning can form.

Faster than care can catch up.

In my sitting, I have been searching for – and now settled on – my word for this year.

(It may also become my word for a while longer, as it’s resonating on a level that’s deeper than calendrical, but for now, it’s 2026’s word).

2025’s word was Space. For me, that had three resonances: giving myself space and grace to grieve, and go at the pace my body and brain were requesting; holding space for others, in both professional and personal contexts; and tentatively taking up a little more space myself.

2026’s word is Representing. It, too, has three resonances, encompassed for me in the two forms it takes in this letter’s title: Representing and Re-Presenting. The three resonances I find in it are as follows, with the perhaps most obvious one last:

To present, in one sense, is to frame, show, display. In another, it is to offer.

So, in thinking about re-presenting, I am considering how I reframe what I can offer as a multiply marginalised person who is both personally and professionally invested in artistic, activist and academic engagement with culture and creativity.

How I can show up as a freelancer: for my colleagues, clients and collaborators (both new and old) across projects, organisations and industries.

How I can show up as a person: for my family and friends (and friends who are family), and also for myself.

Present, in another sense, means current, now.

So, in thinking about re-presenting, I’m also considering how crucial it is that I feel, and am, grounded in the present. In relation to the pacing that’s required alongside my health and care needs, of course, which was a factor in my choice of Space as my word for 2025.

But also connected to showing up and being present now. Not in an urgent or rushing way – the opposite, actually. In an intentional, deliberate, mindful one. Because, as many far more eloquent artists, activists and academics have articulated before me, that in itself can be resistance.

I referenced earlier the idea that time is a construct. I’ll go further now: it’s a deliberately crafted construct. To make sense of our existence, sure, but also to exert control over it. And that control is co-opted by leaders (whether governmental or religious, or capitalist company bosses) to keep us in check. Through encouraging exponential development and growth for the benefit of an imagined, abstract future, we are discouraged from complaining about, protesting against, or campaigning to change present conditions.

But the thing about being multiply marginalised (and, in my case, growing up as part of deaf, disabled and neurodivergent, and queer and trans communities, which all have a deep comprehension of bereavement and grief, as do other marginalised communities of which I’m not part) is that it teaches you there is no guarantee of a future.

I wrote, in January last year, in relation to several cultural (more specifically, theatre, circus and literature) experiences I’d had that, ‘for marginalised and multiply marginalised people, existence is resistance. Whether we want it to be or not.’

I still think that.

But, this year, I’d reframe (re-present) it slightly. To emphasise another element of which I and so many others have always been hyperaware: that existence is contingence. Both because our existence depends (is contingent) on the support and solidarity and community of other humans, and because it is always uncertain, unsteady, provisional (contingent).

We’re always vigilant, hyper-present, because we never know how long it (we) will last.

That vigilance brings the both/and of grief and joy I ponder so frequently, both within Wordy and Wheely and elsewhere. Because we are here now and we might not be tomorrow. And, in that particular both/and of being so poignantly present, I find power. The power to say:

Not later.

Now.

Change has already happened, is happening, and will continue to do so.

Because the status quo is not sufficient.

For me, being in the present means knowing how far we’ve come and how far there is still to go, at the same time (literally) as acknowledging that the only tangible, palpable part of any journey is its present point.

That brings me to the third resonance of Representing. The full word, and its multiple meanings, which in many ways combine several points of the above explorations:

To represent means to carry meaning. To symbolise. It also means to present back, to reflect, to show again, to display again. And, in perhaps a fusion of both those senses, it means to carry that meaning, to inhabit and embody it. So, when performers represent characters, we are inhabiting those characters – but, because those characters only exist through being embodied, we are being inhabited by them. We both make their meanings and our meanings are made by them.

My work, and thinking, artistically and academically, grapples and plays (pun intended) with the implications of that embodied exchange.

I ponder long and hard about who gets to mean what, which bodies and minds are considered to represent (mean and symbolise) too much, too little or just enough to be taken on our own terms and allowed to be believable as characters.

Who gets to represent (inhabit, embody, present back) particular communities.

Who gets to make meanings, and have meanings made.

Who gets to witness and be witnessed.

This year, I am foregrounding my interrogation of, and interaction with, those explicitly embodied (and therefore present) dynamics and their implications. Across my creative projects – including this newsletter – and my research and consultancy.

Because yes, the cultural and creative industries do need to improve on representation, both onstage/onscreen and offstage/offscreen.

(A pause to please note the plural ‘industries’, since there are many – and yet more sectors within those industries – which each have individual structures and expectations and idiosyncrasies and mean they are anything but a monolith, especially as so many workers are freelancers).

And I am forever passionate about the potential of art and culture for activism and promoting change.

Indeed, I shared in my recent contribution to the DARCI podcast that my ‘dreaming big’ is that ‘everybody who wants to engage with storytelling, and the production and creativity and the mechanisms that go into storytelling, can do so in a way that is accessible to them’. Because, for me, that’s what storytelling is for:

To represent (and re-present) societies, and humans, back to ourselves.

And that means – it has to mean – all humans.

Which it still doesn’t. Definitely not.

But I know, too, how much has got better – since I first started out as a performer in my teens, and since I was a kid watching shows in theatre and on television, and surrounded by other disabled, neurodivergent, queer and trans people who were still working to have our rights recognised. And I know how much wonderful work is currently being done.

Work that shows that better is possible right now.

That personal and professional past and present means I also know that, like other industries, those engaged in creative and cultural production have their conditions of production shaped by the societies in which they exist.

That requires those societies to be invested in representation.

And, to be considered as deserving of representation, marginalised and multiply marginalised people have to be recognised in those societies not only as deserving of rights, including related to employment – but to be recognised as people at all.

To be allowed just to exist.

To be understood on our own terms. In real terms. As more than metaphors and symbols which can be co-opted to make us signify, make us mean, something else. Something more and less. Something too much and not enough. Something other. Something apart.

Only when we are afforded the privilege of being enough in ourselves are we offered the opportunity for truly equitable representation.

Each part of that equation can, of course, motivate and move the other.

And they do.

I’ll wheel back briefly to reiterate my deep passion for the power of art as activism. Because the joy and relief that comes from feeling represented, from feeling witnessed, on stage or screen is real and still rare – and it can very palpably promote change.

It is, right now.

In rehearsal rooms and on sets that show me how showing up as a performer and a writer is powerful.

In order to show up as a performer and a writer, though, I have to show up as a person (which includes in my case, as someone who requires significant support with personal care, being facilitated to do so). So, the final layer of this third resonance represented (re-presented) by Representation is that I’m re-presenting and reaffirming my original reasons for writing this newsletter. Namely, to present (offer up) a space which:

charts the joys and struggles of navigating culture, creativity, and a career in both, whilst disabled, neurodivergent, queer and trans.

This means:

There will still be poetry – and maybe even other forms of creative writing.

There will still be reviews of, and personal reflections on, literature, theatre, television, film, music – and a myriad of other cultural and media productions (note, again, plurals).

(Because, honestly, in a convenient parallel to my point about representation and how it is embodied in, and characters are inhabited by, performers, my personal and professional perspectives and interests are so intertwined that I’m not entirely sure where each begins and ends. As shown in the pair of photos selected for the featured image.)

[Image description: A collage of two photos of Jessi - a white person with short brown hair and brown eyes - sitting in their powered wheelchair. In the left photo, Jessi is smiling after a physio session. They are wearing a grey-and-white striped top, blue trousers and blue Converse shoes. Their chair is parked by the edge of a grey mat and the physio bench is just visible beside them. Jessi is comfortable and upright, even without their new harness, because of changes to their cushion and backrest. In the right photo - image credit Shona Louise - Jessi is sitting on Hampstead Heath. They are wearing a denim shirt, a white t-shirt which reads, ‘Disabled Main Character’, in block capitals, and grey trousers. They are smiling gently at the camera. /End image description.]

But I’m also – gratefully embracing the shift in physical perspective given by the changes to my chair and increased comfort – going to be ramping up my representation of, and reflections on, the realities around my artistic and academic work, my activism and advocacy, and my collaborations with others across all of those arenas.

It’ll really (wheely!) mean a huge amount to have you along for the next stage (theatrical pun intended) of its, and my, development.

Because existence is resistence and contigence.

And better is possible now.

Thank you so much for reading, take care of yourselves and one another, and love and solidarity until next time,

Jx