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.