Exactly one month ago, on 23rd March 2020, the UK entered ‘lockdown’ to combat the COVID-19 pandemic. This means everyone stays at home except for essential travel, food shopping and exercise.
As a disabled person with additional high-risk factors, I took the decision to lockdown a week earlier when it was clear that the situation was escalating and posed a significant threat to my health. Since then I’ve not been going out at all.
We issued a statement from Touretteshero a few days after our lockdown, explaining our reasoning, and saying that we were winding down all non-essential work to focus on survival and supporting disabled people and their families.
A month seems like a natural time to reflect on what’s happened so far, and to think about what might happen next.
My mind’s been turning over the current situation and what would need to change for it to be safe for me to leave the spaceship. For the situation to change for me and many other disabled, sick and vulnerable people, we need there to be:
- A reduced risk from COVID-19 – an effective treatment for those who become most unwell, or a much clearer understanding of the risk factors that make this virus life-threatening for some people and not for others
- A reduced risk of getting COVID-19 – this could from a vaccine, or from the number of cases getting so low that there’s very little likelihood of community transmission
I’m confident we’ll get to both these points in the end, but I suspect it’s going to be a long time before we do so. Thinking about this has helped me realise that disabled people, and disabled led organisations, are likely to be in this for the long haul.
I’m not worried about our ongoing lockdown life as such – this is the reality of the situation and it’s what needs to happen for us to be safe and to survive. What I am concerned about is that when the rest of the world starts to get going again, it will be without us. That risks the perspectives and requirements of disabled people being overlooked, and the barriers that have taken decades to dismantle suddenly springing back up.
There’s an important phrase that’s central to disability activism: ‘Nothing about us, without us”, more recently reinvented to simply ‘Nothing Without Us’. This is because we know that when our experiences aren’t considered at all by non-disabled people, barriers to our own participation increase.
Creating systemic change is difficult while the system is up and running, but one accidental gift of this awful pandemic is that lots of services have had to pause or change dramatically. Consequently, when it comes to re-forming our society, we must do it in a way that considers everyone and creates fewer disabling barriers.
I know lots of people will want things to go ‘back to normal’. But I don’t, because ‘normal’ wasn’t working for millions of people. We can do much better than return to the unequal, barrier-ridden world that we left behind at the start of the lockdown.
This is an incredible opportunity, but it’ll only happen if disabled people and others with the lived experience of systemic oppression are central to the process, even, especially in fact, when we can’t be present in person. So, I urge anyone who has decision-making power, particularly those in the creative sector, to put inclusivity at the centre of their strategies.
I understand that if you don’t have lived experience of barriers, knowing where to start can feel overwhelming. So, here’s a simple list of areas that the pandemic has started to change in positive ways that I’d like us to hold onto and develop further:
The Digital & Remote Realm – Remote working is something that lots of disabled or chronically ill people request as a ‘reasonable adjustment’ to help ensure they can work in a safe, sustainable way. Before COVID this was often seen as impossible, particularly for certain types of job, for example: banking, education, council workers or leadership roles. The last few weeks have seen a revolution in remote working and in the range of digital content people have access to. We need to urge our cultural organisations not to give up remote working or diminish their digital offer, but to continue to invest and innovate in these areas.
Time and Energy – For a long time the creative sector has been built on normative expectations about people’s time and energy levels. For example, sending emails late into the night is often seen as ‘normal’ and is seen as evidence of commitment and drive rather than an unmanageable workload. During the pandemic I’ve seen many examples of thoughtful approaches to time and energy, all of them healthier, fairer and more humane. Let’s build on this. As organisations spin back into life, there’s a great opportunity to have open conversations about our working practices and the way art is made and enjoyed. Our bodies, minds and circumstances are all different, so our requirements are different too. Greater flexibility with when we work or how we engage with art will lead to a healthier, more accessible, cultural sector.
Keep it Simple – I’ve done some funding applications in the last few weeks and I’ve been struck by the work that’s gone into making the process as simple and straightforward as possible. If we can make things easier for each other during the pandemic, then surely we should be able to do this permanently. I’d like us all to stay thoughtful about what we ask of each other, and to commit to getting rid of any unnecessary complexity.
Accessible Information – Despite what some politicians might have us believe, we’re not all in this together. Access to information during the pandemic hasn’t been equal – Deaf people have been forced to take legal action against the Government over the lack of British Sign Language (BSL) at the daily Coronovirus briefings. I’m also aware there’s been a lack of information in audio, tactile or easy-read formats. There has rightly been an outcry over this, and the cultural sector needs to take note. Now is a perfect moment to plan and deliver systems that make communication with staff, artists and audiences are available in multi-sensory and accessible formats.
Change Can Happen Quickly: My last point is, in some ways, the biggest and most far-reaching. What’s happened over the last few months has revealed how quickly change can happen when it’s seen to be in everyone’s best interests. This frustrates and excites me in equal measure – what it reveals is that nothing that we think of as being unchangeable, actually is. Now that we all know this, I’d like to see more action and fewer excuses when it comes to eliminating systematic inequality and exclusion.
The experience of life in lockdown isn’t new to lots of people, and for some it won’t end when the restrictions are lifted. We’ve all been given an insight into this, and my view is that the organisations that will be the strongest, most interesting, and most resilient long-term will be those that utilise this incredible opportunity best. We can achieve this by listening to people with lived and professional expertise, and by avoiding re-creating historic injustices.