Author: sarah

Last week was a strange one, full of disappointment for self and others but also a week that surfaced a new sense of what disabled-led steadfastness and stealth can feel like in the fight for disability justice in all its manifestations in our respective societies today. Disappointment yes, but source of joy and impetus in so many ways.

The chance for Sync Leadership to join hearts and minds again with Shubbak Festival was compelling. We came on board to share the story of 63 Days of Sit-In – a performance and documentary film by Basta Theatre Collective based in Palestine. The showcase was at Theatro Technis in London, and it felt such an apt and a vital continuation of the work started with British Council investment in Sync Arabi through our leadership programme in partnership with ArttoHeart in person in 2023 in Jordan and the UK.

Deaf, disabled and neurodivergent leadership and community building often have activism as a core construct. It is all too familiar to be left with no choice but to take to socials and the streets to protest at the inequity of life and opportunity, over access to health insurance and care, travel and transport, buildings, education – arts and culture, access – all of it.  We are left out of so many decisions about our lives and leadership, it feels unfathomable at times. As one of the Palestinian ‘fighters’ in the documentary so poignantly shared, if we are included in our society, ‘we complete each other’.

Sync worked alongside Willie Elliott. 16 years ago this month, Willie was a key protagonist in the audio description at the opening of the London 2012 Paralympic Games – an unforgettable spectacle which Jenny Sealey (a Sync Alum) co-directed. It still stands as a testament to the energy and joy felt in the fusion of arts, access and activism! Telling our stories often feels like activism or acting up in some way and there’s power and celebration in that. And laughter too – where would we be without that?

Willie also shaped the live AD for 63 Days of Sit-in, both its performance and the documentary film.  I mentioned disappointment in my opening sentence: when the lead actor, Hamad Samamrah, became ill during rehearsals last week in London and was unable to perform, the impact was felt deeply by us all. 

Despite this the audiences still joined us and were able to connect with this powerful piece of activism through a touch tour of the set and an accessible film screening. It left us feeling closer to Hamad, even in his absence, and to his life’s work, and to the fellow disability rights activists who protested inside the Palestinian Legislative Council during the COVID-19 pandemic. We also bore witness to the incredible allyship of Hussam Ghosheh and Basta Theatre has brought to this important protest in history. We were lucky that Hamad could at least join us for the Saturday Q&A, and it’s fair to say that our lives were changed by his story and contribution and those of his co-conspirators.

It is crucial to tell our stories, and these stories emerging from the region and in Gaza – areas of exponential disablement – are more profound than we ever thought possible. As disabled people we must not shy from talking about what is happening, acting without permission to get these voices heard.

Another story perhaps more widely known is the soon to be screened Being Heumann – a film focusing on the better known life of Judith Heumann whose activism paved the way for others often described as of the ‘Mother’ of the Disability Rights Movement in the US’. The film is to be premiered at the Toronto Film Festival (10^th Sept) and it features other Sync alum and associates, namely Alex Bulmer (our Sync Leadership co-facilitator) and Yousef Kadoura, who supported our Sync podcasts and promotional films in Canadian projects over several years. Our very own Ruth Madeley takes the title role as Judy, a UK export on the back of her portrayal of the brilliant Barbara Lisicki in the BBC, 2022 drama ‘When Barbara met Alan’.

But back to our Sit-In week. Alia Alzougbi CEO and Artistic Director @Shubbak in rounding up the Q&A on Friday, spurred us on with 3 crucial pieces of advice: occupy, don’t ask for permission, laugh a lot. Sublime advice for all of us! Let’s find the laughter in amongst the disappointment and challenge, and experience the empowerment solidarity brings.

63 Days of Sit-In was developed with the support of the Disability Under Siege (DUS) Network, University of Birmingham and British Council Palestine through the Jerusalem Creative Spaces programme with the London presentation supported by British Council, Wijhat (an initiative of Al Mawred Al Thaqafy – Culture Resource), SyncLeadership and Dais Hale.

When Sarah invited me to join the Sync team a few months ago, I was thrilled!! I participated in Sync in June of 2020. A time, for many of us, myself included, defined by disruption and isolation. The five day intensive was like a buoy in a vast ocean, the cohort that gathered quickly became a safe, nourishing, and encouraging community. The five days, and the lessons I gained from them, guided the next chapter of my professional and personal life.  

Two years later, I joined Sync Twilight as an action learning coach. While I had spent much of the past two years putting into practice what I had learnt during Sync, Twilight coincided with a turbulent season of my life, again the program and the community became a buoy. I had assumed serving as a coach for Twilight would not return the same community I had prior, but, of course, I was wrong. The small group I was in became a tight knit community almost instantly, after a few sessions, we were all sharing things with one another we wouldn’t normally share. That safety emboldened us to take bold next steps in our professional journeys. 

Now, in summer 2026, we are not in the early days of a pandemic, and my home and personal life is devoid of chaos and turbulence, and Sync has found me again. The gift of this position is perspective and curiosity. I have been able to look back at who I was and where I was and how the lessons of Sync have changed me. With this perspective, my curiosity turned outward to the rest of the Sync community. 

When in people’s lives did Sync find them? 

How did Sync integrate with and influence their lives? 

What lessons and learnings have they brought with them?

What more can be done in service? 

How can I learn and grow from this wisdom? 

I have had the opportunity and privilege to speak with a few alumni of Sync, some who I know well, some I’ve crossed paths with, and those who I met for the first time on our zoom call, all who brought a level of generosity to our conversation that has been both a gift and teacher. 

Sync has a funny way of finding people in very specific times in their lives, whether that is while completing a different residency, while busy and not in the best place, and while delving deeper into an arts practice. Wherever one may be, Sync will meet you there, and how you arrive will be welcomed, desired, whole, and enough. 

When it came time to delve into what folks had learned about themselves through Sync, 

Laura, an alumni of Sync Atlantic, called her leadership style symbiotic and patient while Louie, an alumni of Sync Alberta, called theirs bravely authentic, Seeley called hir leadership style adaptable, creative, curious, passionate, patient; naming that Sync’s process allowed hir to look inward to name these traits. 

What these three leadership styles signal, is a generosity to self and community. Community and generosity are central to Disabled leadership, how those materialize in each of us, is a unique art form. 

For each of them, Sync has offered both a community and proof that strong Crip communities can be formed when we centre honesty, intentionality, and accessibility. We carry our communities and the truths we know into our work, our relationships, our futures. 

Like my first introduction to Sync in June 2020, these conversations have been transformational for me. An offering to look inward to guide my path forward. 

Through every conversation I’ve had, a few things remain steadfast: Disabled folks know, intrinsically, how to build and maintain community, Disabled leadership is as multifaceted as our community is, there is purpose and meaning to the things that come into our lives, true magic occurs when we are supported wholly.  

In 2020, my leadership metaphor was a microscope able to zoom in or zoom out, but hazy in the in-between. Six years later, I’m no longer looking for a crisp image, faulting myself for not finding it, I’ve found magic is found in the haziness, found in the journey, and the looking itself. 

Sync can be of service, a place of creation, reflection, wisdom. 

A wisdom we can all grow from. 

This is what Sync is, this is who we are.

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It’s not enough for disabled people to make art, the context they make it in matters too. 

I’m the director at an organisation called Unlimited which commissions disabled artists to create exceptional work. At Unlimited, we describe ourselves as ‘disability led’. That means our staff, our board, our core decision making processes are all made by people, groups and teams that are as a minimum 51% disabled people. 

We are proud, delighted and determined to be (and to stay) disabled led – it matters hugely. It’s not enough for disabled people to make art, the context they make it in matters too. 

Any art making by disabled artists can, of course, be brilliant. Historically however there has been distortion, censorship, control and coercion within some contexts where disabled artists have made work – think of all the collections of work that exist from hospitals and asylums that are named after the doctors of patients. Where the artists are unknown, the doctors or institutions own the work, gain the credit and the cash. Think that’s in the past? I can name a large number of directors, choreographers, curators and collectors who are non-disabled and still working from this model – all far more prominently acclaimed (and well paid) than the disabled people they collaborate with or whose work they benefit from.

But this isn’t just about why it matters, it’s about what it costs – not only in cash terms.

But let’s start with the money. We recently calculated that ‘in the last six months alone Unlimited has spent over £20k ensuring meetings and processes are accessible for our 93% disabled-led board and our 83% disabled-led staff’. That’s £20,000 more than an organisation that didn’t involve disabled people would have to spend, and that’s only half the year.

And those access solutions don’t just magically get put in place – there is labour in the determining, contracting, briefing and supporting access providers and organising other access support. The figure above doesn’t include that labour.

And there’s more work internally too – such as ensuring the team all have access riders if they need them and that they have space to adapt to what other team members need, or ensuring everyone who works with us has disability equality training so we share a common base level understanding and terminology.

There’s the work on policy adjustment. Most organisations don’t really look in detail at how policies impact on disabled staff. We do. For example, at how in the UK sickness absence policy terms and conditions are different from disability related absence (which doesn’t have to come from your sick leave allocation). We’ve had to work through and improve our policy and to determine different levels for all our disabled staff. We take one policy a month – our expenses policy, our access policy, our data policy, our flexible working policy… basically all our policies need to be seen through a disability led lens and adjusted. 

All the above is easy to write about – the rest less so.

..It’s not the bruising interactions with external ableist structures, painful though they are, it’s the cumulative impact of those interactions.

Reflecting personally here, the biggest adjustments aren’t the internal ones, they are taking our disabled-led organisation into the world and meeting the ableism of others, which I wrote about recently here. And even then, it’s not the bruising interactions with external ableist structures, painful though they are, it’s the cumulative impact of those interactions.

It gets to me. It makes me doubt myself. The number of times one hits barriers, it would be easy to assume that ‘they’ are right and you are wrong. It starts to nag that surely if barriers should be removed and they aren’t then it’s because somehow, they are needed or necessary? Now intellectually I know that barriers exist because people setting up systems don’t have the knowledge, time, resources or care to make them accessible. They don’t think about it and they take short cuts. Often the damage they create isn’t deliberate. Morally, and often legally (in the UK), I know that I am correct to push for reasonable adjustments, adaptation and change in line with the social model, to make the world more accessible to all. Emotionally, I start to internalise that feeling of being too much, asking for too much, being a burden.

If I’m already exhausted, this can quickly spiral into a ‘I’m not good enough’ or ‘I can’t do this’ narrative which can be damaging. And I’ve never been more exhausted trying to run, let alone develop an organisation whilst the world burns around me.

Austerity, a pandemic, war, a political system (UK and worldwide) in disarray, cost of living increases off the scale, reduced access to healthcare and access, energy crisis and so much more pile on top of each other making everyone scared, unsure and nervous. Add to that a label of ‘clinically extremely vulnerable’ to covid 19 (like myself and a number of my colleagues have), the UK’s decision to forget covid is even here and just carry on ‘as normal’ despite raging numbers of both covid and those experiencing long covid symptoms, and perhaps it’s easy to see where the exhaustion comes from. 

A salvation is finding comradeship within and amongst our disabled led peers and allies –  people who ‘get it’, places where I – and they – can take off the armour we need to work within the world and simply be without apology or excuse. 

We see a mistake and we go for the attack, even with those in our tribe, often publicly calling out rather than privately calling in. 

Although even in those safe places, its sometimes impossible to truly relax and take all our guards down. We are human after all, and everyone is tired and taut. We see a mistake and we go for the attack, even with those in our tribe, often publicly calling out rather than privately calling in. It’s easy to allow feelings of envy or jealousy to bleed into snide comments or backchat, especially when budgets and opportunities are squeezed and panic starts to rise. We set ourselves impossible standards – and we expect them of others too. Life is hard right now.

I have to remind myself often to first be kind. This was something that previously would have been second nature but something the last three years seems to have stripped away, grating a slither more empathy off me with each new challenge to face.

First be kind – as we never know what others are facing. Second be kind – especially to my disabled kin who are as exhausted as I am as we face more barriers now than ever, including the re-emergence of many we thought we’d already removed. And third be kind – because it’s the best, fastest and most positive way to make change in the world. 

It is always a choice. You can water the seeds of fear and anger if you want, but I want to choose to water the seeds of compassion, understanding and kindness where I can.