#AskForAccess – be an ally to disabled people

A black background, with #AskForAccess written on it in white
#AskForAccess and do your bit to challenge the exclusion of wheelchair users from society

Wheelchair users are excluded from a huge variety of events. Whether talks, readings, performances or workshops, organisations often choose venues that don’t have wheelchair access. When challenged on the deliberate decision to prevent wheelchair users attending their events, they will often say that no wheelchair users come anyway, or that they couldn’t find another venue. What they mean is “nobody really cares”.

Events that don’t provide the bare minimum of wheelchair access are not accessible, inclusive, or diverse. They further the oppression of disabled people and wheelchair users, and limit our opportunities in life. But you can change this.

Let’s show the world that it matters that wheelchair users attend events. Let’s show event organisers that they need to include us. If the demand is there, the access will be provided. This can’t just be achieved by wheelchair users ourselves – so here’s where you come in.

Whether or not you need wheelchair access, when you’re considering attending an event, drop them a message. Tell them you want to attend, and ask whether they provide wheelchair access. Once events see that the demand is there for wheelchair access, they will start changing their policies and providing access. It’ll take 2 minutes, and could make a real difference.

For example:

Hi,
I was considering attending your event on ABC because it looked really interesting, and I wondered whether you were using a wheelchair accessible venue for holding the event.
I really hope you provide wheelchair access, and I’d love to see you at the event
Best wishes

If they reply to that, you could encourage them to make access information obvious on their website, or you could challenge their refusal to provide access:

“As I’m sure you’re aware, there is a legal anticipatory duty to make reasonable adjustments to include disabled people, which include making sure that you provide basic wheelchair access – whether or not you know that there will be disabled people there.“

But the thing is, you don’t even need to follow it up. By sending that 2 minute original email, you’re showing them that there’s a demand for wheelchair access to their events – so what’s stopping you?

Every time you want to attend something, just #AskForAccess – and do your part in challenging disableism.

Now is a time for artists; now is a time for heroes

The world feels hopeless. Between Trump and Bolsonaro, Johnson, Jinping, Modi, Putin.

The news scroller in the hospital tells me that the pound is surging and the stock market is rising. It tells me that the Democrats intend to impeach Trump. Trump has struck a trade deal with China, and humans are responsible for making American parrots extinct. Progressive hope seems downtrodden, and my friends are all looking at each other while we try to make sense of what happened. Nobody knows how it went so wrong. How the country voted for such a monumentally destructive course (in my middle-class remainer position). We all have suspicions.

What does this mean for artists? It is an imperative to make art. It is an imperative whether we’re making beautiful art to replenish and restore the reserves of a drained and divided population, a step. Art whether we’re challenging people to be better, to crack their shells and let the light in, or planning the tearing down and rebuilding of our lives and communities. It means we are needed more than ever to reach out and create the possibilities of worlds that hang just before our fingertips.

Art isn’t the preserve and property of people who want to create apolitical beauty – but nor is beauty apolitical right now, because nothing is. If you make an active decision not to tackle politics, to not have people of colour, or disabled, or queer, or trans people in your work, then that’s a statement about how you see the world, and how it reflects people like you, and nobody else. If you write about cultures you don’t know and have never engaged with, it reeks of colonialism. Now isn’t the time for that.

In many ways, this election failed to be the progressive possibility it might have been because as a population we failed at building bridges and reaching out to people ‘not like us’. And that isn’t the fault of those people that worked at it, but fault is a zero sum game. It didn’t happen. That’s the fact. And art can make it happen. Art builds worlds into which we can invite people. It offers the very real possibility of showing people what it means to live and exist with certain experiences, and through that, the possibility of drawing connections with people.

Through art, I can maybe convey the fear and terror of what it means to be this dependent on the NHS, on an NHS that can, at any moment, force me into a care home. Maybe I can share the agony of months waiting for a wheelchair that doesn’t further twist my spine. The realisation that even leaving my house is something I have to beg to be supported in doing. That fragility of life – that a life sentence for nothing more than being expensive waits round the corner. That I am always trying to avoid the ghosts of myself that hide in other timelines, where I’m already institutionalised. The fact that my freedom is jealously guarded.

As long as we go into this convinced of our rightness, certain that there is nothing left for us to learn, only to teach people what it is to lead our lives, we will never build those connections that can change the world. I want to know what it means to be an older man from a manufacturing background who has slowly had each dignified job taken away from him. I want to ask him to share it with me, and to support me in writing about it.

We cannot only make art that reflects us, and our stories. We should, I believe, do that to some extent. Do that because it reaches out to people and invites them to share our experience. But then we need to make art that goes beyond that. We need to make art that builds bridges between experiences. That sees the commonalities and humanity in our connections , and then welcomes our shared humanity.. We need to talk and research and understand, then build on that.

We need to commit to regular practice on days when the grey cloud hangs so low our minds seem to be swallowed by it. We need to talk and hope a future, and we need to art it into being. When we feel like we cannot go on creating, we cannot go on at all, we need to reach out to other artists. We need to build resilient communities and communal working methods that can last beyond the immediate crisis to look at the future. We need to not be destroyed by bad news, when we are stronger than that.

Who is with me? Who am I with? And what do I have to offer?

My ability to provide online support and communication is limited. I struggle with typing, and I am at capacity. However, I can provide a lovely co-working space to friends and colleagues, in my flat, with my greyhound. If you know me, reach out. If you don’t, get to know me. Slowly.

I want to build. If we can do it now. when we’re shocked and stunned, when we’re sickened by the feeling that our country has changed irrevocably, then we can do it any time.

Winner of the 2021 Evening Standard Future Theatre Fund Awards in Directing and Theatre-Making

I’m delighted to have received one of the Evening Standard Future Theatre Fund Awards in Directing and Theatre-Making.

Jamie Hale in a blue shirt with red hair, glasses and beard

I was nominated back in November by the Barbican Centre – probably because of my solo show, NOT DYING (dir. Kate O’Donnell), which I staged there as part of CRIPtic 2019. My nomination was in a category for people who’d had theatre training, so I was startled to be shortlisted – but also optimistic. Not necessarily about my chances of winning, but out of a sense that the theatre world is changing – and that a submission that focussed on disability and access could be seen as important by a judging panel that included Kwame Kwei-Armah and Paul Roseby.

By the time the interviews came around, I was in the depths of a family tragedy, and barely coherent when faced by Matthew Xia and Kwame. When asked how I felt when shortlisted, I said I was staggered – that I just hadn’t expected it. Kwame asked why I’d applied then, and I said something about never turning down opportunities, and hoping that they’d be interested in something new. We had a conversation which I barely remember about NOT DYING, then I was told Matthew had something to tell me – that I’d won.

I burst into tears – partly due to the family tragedy and timing, partly due to what the money could mean for my career, partly out of what Kwame said about looking forward to welcoming me to his theatre – and partly because I realised that the future of theatre really was making space for disabled artists.

I was even more blown away on awards night to see that the four artists nominated by Graeae (a d/Deaf and disabled-led theatre company) three won. Out of the six categories, in which there were two winners each, a d/Deaf or disabled person won in at least four (myself in theatre-making/directing, Adam Fenton in acting, Beth Hinton-Lever in musical theatre and Nikki Charlesworth in visual design). I don’t know whether either of the winners in the audio-design or the breakout awards were disabled – but even if not, 5/12 of the winners were disabled.

This really shows me that we can be the future of theatre. That theatre sees us, our voices, our stories, and our talents as its future.

So, what am I doing with that?

The only answer is CRIPtic! We’ve had over 50 amazing applicants, and now it’s onto the process of shortlisting them all for interview. Knowing the extent to which d/Deaf and disabled people are seen as the future of theatre… well, you’d better watch where we’re going.

Shield – my poetry pamphlet is RELEASED

The cover to Jamie's poetry book, Shield. The image is made up of six horizontal stripes. The outside ones are white, and inside it goes yellow, pink, navy, turquoise (top to bottom). On the top white band in green it says "Jamie Hale" centrally with "Shield" in pink next to that. There is a white mask across the coloured bands. At the bottom on the white band it says "Verve Poetry Press" in pink

At the beginning of the pandemic, I spoke to my GP about being ‘clinically extremely vulnerable’ and intensive care treatment, and he told me that I was “stuck between a rock and a hard place”, that the factors that made me extremely vulnerable would also make me low priority for intensive care treatment. I was devastated, but out of that, came Shield – my first poetry pamphlet, published by Verve Press.

It was important to me that I create something that highlighted, demonstrated the value that disabled people have, that we’re not just vulnerable, or disposable, that we’re a part of the world – and everyone’s interconnected.

This emerged through a series of 21 sonnets – some in my voice, and some in the voices of other people, linking together what it means to be an interconnected humanity at this time. Writing those sonnets saved me for the fear and devastation that crept in, and now they exist, published, in the world.

On the 23rd Jan, I will be doing a launch event for the book – with a reading, and an ‘in conversation’ with the author CN Lester, thinking about what it means to be an outsider voice, and the importance of bearing witness. Tickets can be booked for free via Eventbrite (where you can also add charity donations and book purchases), and there’s a facebook event.

I’d love to see as many people as possible – and I really hope that the book speaks to everyone’s experience at this time.

SHIELD

Cover of SHIELD by Jamie Hale

On the 14th Jan 2021, Shield – my first poetry pamphlet – will be published by Verve Press. Exploring my experience as a disabled person during the pandemic through a variety of voices, Shield has been described as:

‘These are arresting, heart-stopping poems lit with a rare intensity. Hale’s poems don’t pull any punches, they explore what it is to live in a body and on the way touch the centre of the fragility deep inside all of us. Humane poems that will make you ache.’ 

– Mona Arshi

You can pre-order from many bookshops, or the publisher themselves here.

There will be a launch event in January

Experimental! An online writing retreat for D/deaf and disabled writers

For a little while now, I have been asking on Twitter for recommendations of D/deaf and disabled writers and I am now delighted to announce why!

Experimental! is an online writing retreat for D/deaf and disabled writers currently living in the UK. Curated by myself and produced alongside Spread the Word it will run from 13:00 – 17:00 (with a half-hour break every hour) from Monday 31st August to Saturday 5th September. There will be a sharing from 16:00-17:00 on Sunday 6th September.

Each day there will be a workshop or masterclass and a talk or reading. There are twelve spaces, half of which are reserved for Londoners and the other half open to any D/deaf or disabled writer anywhere in the UK.

Masterclasses will be led by Raymond Antrobus (poetry), Elsa Sjunneson (essay), and Anne Finger (fiction), with readers including Khairani Barokka (poetry).

There will also be industry sessions including  Jemilea Wisdom-Baako (Writerz & Scribez), Stuart Bartholomew (Verve Poetry Festival and Poetry Press) Owen Craven-Griffiths (Apples and Snakes), Ella Kahn (DKW Associates), Ludo Cinelli (Eve White Agency), Davinia Andrew-Lynch (Andlyn Agency), Aimée Felone (Knights of) and Leordora Darlington (Bookouture)  

Each participant will also have access to a 1:1 session for detailed and supportive feedback on a piece of pre-submitted work

For more information or to apply, see the Spread the Word website

Adaptive Android

Logo for Pathfinders Neuromuscular Alliance

I recently gave a talk on adaptive tech for Android and Windows for DMD Pathfinders, a user-led organisation by and for people with Duchenne Muscular Dystrophy. While I don’t have Duchenne myself, I use a lot of adaptive tech – either regularly or because I’ve tried it. You can read more about the Android tech I discussed here

Compassion: when work stops working

Windows Blue Screen of Death (shown when a computer crashes). The error given is "memory management"

I work. I don’t necessarily have a good work ethic (which I would define as requiring a healthy relationship with one’s time working and not working), but I work. When I’m depressed, I work. When I’m struggling, I work. When I’m anxious, I work. Call this all kinds of maladaptive – when I’m asked what I do for self-care, my answer? Work.

I really don’t say that to brag. I don’t work smart, I work a lot, but that’s a different thing. I don’t do it because it’s necessary, I do it because it’s my principal coping strategy. Hell, I worked a full-time job by day and a part-time job in the evenings during a 6 month hospitalisation with repeated very serious illness exacerbations and multiple surgeries and procedures. For the past few weeks though, work hasn’t been working for me. I’ve not been quite well, for a number of reasons, and while that has been cumulative for the past few months, I’d been able to keep up with the work. If hospital didn’t stop me, why would this?

A lot fell by the wayside during lockdown, as I went ever faster into work. I was scheduling video-chats with friends weeks ahead, because I was literally working, and sleeping. Working, and sleeping. But, I was on top of my mental health, mostly. I was struggling, because lockdown is hard, shielding is hard, the constant terror? Hard. I had a few days where I was too depressed or anxious to work, but those were notable.

Now though, I suddenly can’t work. And that’s not normal for me. I’m just… looking at my laptop for hours and achieving very little. And I’m struggling with that. It’s easy to be like ‘well, I just need to schedule my work better’. ‘I need to work faster’. ‘I need more breaks’. ‘Fewer breaks’. ‘More pressure’. But none of this was making a difference.

It’s hard enough doing my admin work, my non-creative work, my policy work, with a brain like this, that just won’t click into gear. It’s impossible to try and create, and I am ultimately a creator. I have multiple big projects that need my attention, but it just isn’t possible for me to do anything on them when I’m feeling this much like I’ve been filled with concrete. So, I’m having to accept that right now, I can’t work.

Why?

If critical illness didn’t stop me, why is mild unwellness during lockdown? If months indoors didn’t stop me then, why is it now? If the world being on fire then didn’t stop me…

…maybe that’s it? Not that 2019 was a quiet news year, but that 2020 has been busy.

Maybe I’ll never know. Maybe right now, I can’t work the way I usually can. I still have to work (because I still need an income), but I have to work differently. Maybe I need to prioritise projects. Stop saying ‘yes’ to everything. Start thinking about how I can manage my health, and time, and energy better. Rather than beating myself up, start accepting that if my brain won’t work, then that’s okay.

It’s difficult to move from being a workaholic to trying to accept a slightly quieter and gentler pace to things. It’s hard to accept that right now I can’t keep going as usual, anxious, overloaded, but secretly happy to be buried in work.

What if this was a chance for growth though? What if this would let me rebalance my relationship with time, work, agency, effort, importance, the people around me, taking in culture, enjoyment, nature (through the windows)? What if I tried to see it as… wait for it… work?

What?

What if this is another kind of work? The work of judging what really matters, prioritising, managing my time and finding ways of being compassionate to myself that don’t just feel like storing up more work for tomorrow. The work of trying to see my needs in a more holistic way. The work of accepting that I can only do so much before I shut down completely.

I don’t remember when I last took a day off, completely, without it being because I was too ill to work. I think it was probably my wedding day, in February. And that’s not something to be proud of.

Maybe I need to work on myself, not just my output.

(maybe this will make me work better in the long run)

COVID-19 – is online more accessible?

Tito, a slim Italian-American drag king with a turquoise glittery beard, a gold jacket, and a white mobility cane
Tito Bone – whose excellent opinions on access inspired this post

Is the lockdown really more accessible for disabled people, or is it just differently accessible?

I’ve read a lot of disabled people talking about how with the lockdown there are no access barriers, but I’ve also been thinking for a while that actually there are access barriers – they’re just different. It’s easy to generalise and say that because everything is happening online, it’s all accessible, but that’s not necessarily the case. As a full-time wheelchair user, things are far more accessible to me when they’re not sited in inaccessible venues – but the things I gain through a lack of physical access barriers, I lose in other ways.

After toying with this for a while, I read a great post from Tito Bone about access. Tito is right, and expanded on what I’ve wondered for a while – so you should click through and read their whole post now… I’ll wait…

Right, welcome back

I worked from home (hospital) last summer, while working for a major TV project. I skyped meetings, and I did all my work from a hospital bed, because they were so willing to adapt their processes to meet my access requirements. I have multi-hour routines necessary to keep my body going. I am a full-time wheelchair user. I struggle with pain and limited energy. For me, working online was the more accessible option then,

But is it now? When we went into lockdown, most of my work was from home anyway, but more and more was forced online – and I’m struggling. Computer input is an increasing access barrier for me – my fingers are slower and more contracted than they used to be. I can’t dictate effectively. I struggle with using the laptop with positioning, and struggle with typing long documents on my phone.

I am hard of hearing. I can cope day to day, if people have accents I recognise and speech patterns I can predict, without trouble. I struggle more with lower range voices. On Zoom, I struggle a lot more. Sound and lips don’t match up, the detail isn’t there, I can’t rely on movement and body language.

For Deaf people, being told that everything is more accessible because it’s on Zoom must be galling. Without captions and/or a BSL interpreter as needed Zoom is unlikely to be more accessible than in-person support, and might well be less accessible with less access to lip-reading.

I also struggle to read people in general. Facial expressions and body language are a massive challenge for me, and one that’s a lot harder over Zoom. As someone neurodivergent I actually rely on really obvious body language to interpret what people are saying – and that gets lost.

This combination is a challenge. I love remote working, I love using my bed as my office. It’s far better for pressure sore risk as well as for comfort. However, it’s not the solution. The ideal solution is, of course, adequate positioning setups for me to work anywhere – therefore reducing that barrier immediately.

In an ideal world I’d combine in-person and remote working as I needed to. I’d try to go into the office for more detailed, focussed work projects, and I’d stay home when I didn’t need to. If I’m writing articles or reading scripts, I might as well not take up office space while doing so. I am lucky enough to have my own bedroom, so I can work from there. If I didn’t have that, this would be a far less accessible set-up, and disabled people, being more likely to live in poverty.

Being forced to do everything from home, via computer isn’t more accessible for everyone. D/deaf people, visually impaired / blind people, some neurodivergent people – all might struggle more with online work. Although my hands aren’t bad at all, they’re increasingly struggling with this world – so it must be even more challenging than others.

To my D/deaf and disabled friends – please stop saying “this is more accessible” when you mean “this is more accessible to me”, and please start listening to everyone saying it isn’t for them.