November 2023
[heres the text of my opening presentation -images to be added soon]
Welcome welcome!
thank you for coming along to the social model and more festival with theatre deli
Im caroline mawer
the festival curator
im a skinny white woman, age 60, with short brown hair and big purple glasses.
im she/ her.
In this first, opening session of the festival, I want to share some of what I – and we in the theatre Deli team – have learned in the year that we’ve been working on this festival
What we’ve learned about the social model
And what we’ve learned about making theatre with disabled creatives
We’re going to record this, so please switch your camera off if you don’t want to be filmed.
there will be a discussion at the end – but please save your questions and points til then:
we’ve disabled the chat til later – as it can cause problems for some people using screen-readers.
David Ralf, the executive director for Theatre deli in Sheffield and London, told me that his ideas of what it means to produce accessible theatre on a shoestring have been Exploded, especially as our process kept on revealing how demanding theatre is of the artists that make it.
Im going to be discussing this later this with him
But lets start at the beginning.
the festival was conceived when i criticised the London deli access video.
I said access is surely about more than level access and toilets labelled disabled.
The social model, i said, is
Necessary, but not Sufficient.
and i’m going to briefly explore that idea here.
With disabled people excluded from so much until the
very recent past
The social model has definitely been necessary.
IMAGE 1
im showing you a black and white leaflet or maybe its a journal from 1981
– its Labelled: from the union of the physically impaired against segregation.
And headlined: disability challenge.
The top half includes a wheelchair symbol plus lots of small black and white text
The lower half includes larger text saying: the unions aim is to have all segregated facilities for physically impaired people replaced by arrangements for us to participate fully in society
It was and still is clear that Unjust Circumstances are creating barriers to full lives for disabled people.
Its not our fault.
Removing the barriers would improve equit
Simply hearing that has felt liberating for many.
But just talking about the social model hasnt got rid of inequity.
So there was lots of direct action leading up to the 1995 disability discrimination act.
IMAGE 2
im showing you a white man with glasses and glorious facial hair blocking a red London bus number 52 with his wheelchair.
the bus says sorry! Not in service.
There is a sticker on the front windscreen saying Cripples not allowed
a large poster Is hanging over the front of the bus saying “disability rights, the final frontier. To boldly go, where all others have gone before.
there’s one supporter kneeling at the feet of the man in the wheelchair, plus someone else looks like they’re lying under the front of the bus.
After this sort of direct action, there is now some level access to buses in london.
Of course those buses may not take you to a good job – with unemployment among disabled ppl as high as it is.
Just talking about the social model and having some level access does not lead to full participation.
IMAGE 3
Im showing you an example: an entry to the outpatients clinics in UCH london
this is the first of two huge double doors across the main corridor
You might think they know what they’re doing with so many disabled ppl using their services but its the same all the way through – theres level access but heavy doors block the way. they’re sound proof – so there’s no point shouting.
You have to wait and beg strangers for help
Lots of the toilets labelled as disabled in UCH have rapidly-self-closing doors. if you’re alone and disabled its practically impossible to get in and out – again you have to wait for a stranger and then smile and be ‘grateful’ for access to a toilet.
Its similar in the british library, the wallace collection, the national gallery – i could go on.
Disabled people are asked to carry out such a lot of this invisible work – and so to show ridiculous levels of mental resilience
Any so-called gains that we’re supposed to be grateful for are not secure. but can be threatened at any time.
Im sure you all know about the recent u-turn on the plan to close railway ticket offices – but that took a huge campaign to overturn something that was clearly discrimination.
There are other, more Existential threats
The slow and bureaucratic violence of the State means Deaths by Welfare.
Literally.
Its easy to Check these out on the terrifying timeline.
Or you could remember that 6 out of 10 of the 223,000 people who have died with COVID in uk were disabled.
World beating, they kept on telling us! but maybe not in a good way!
Just a few weeks ago the Joseph Rowntree foundation published a report on destitution in the uk. They weren’t talking about poverty. or deep poverty.
but destitution. which means you don’t have enough money to stay dry, warm, fed and clean.
shamefully, 3.8 million people in the uk are destitute
and now im showing that:
IMAGE 4
Almost 2/3 of people who experienced destitution in 2022 report a disability or chronic health problem. #Don’tIgnoreDestitution.
This is even more shameful. Since of course if you’re not dry, warm, fed and clean you’re going to get even more disabled
all these examples say to me that – however fine it sounds – the social model has not been adopted in practice. that looks to me like its not fit for purpose
Maybe we cant Solve these massive problems right now.
But i want to say : if not us, who, and if not now, when
im going to repeat this: if not us, who, and if not now, when
David probably wants to steer me back towards Theatre.
While I keep on Thinking that theatre is about storytelling
And the continuing life and death threats to disabled people is a Big Story
directly affecting – officially – 1 in 4 people in the UK.
unofficially and indirectly with families and friends, of course it must be much more
even I can acknowledge, we’re not gonna sort all this out in the next half hour
but I want to firmly Underline – and of course lots of you already know this – that being disabled means being poor.
poverty is an inescapable context for disabled creatives that we must not forget, not forget like so many others do
[big breath]
But can we make any difference?
and how could we do that?
Im interested in differences for theatres like theatre deli .
as well as for Individuals
Im going to focus on individuals
before David and i discuss theatre in a few moments.
[breath]
now im going to I confess I was – and still am – personally struggling
With my own changing identity, as I get more and more disabled, with more and more impairments
That’s a big part of why I agreed to be curator – i wanted a chance to think deeply about this.
and now i also have to confess that i’ve avoided thinking about this for myself
and i definitely havent found a simple ‘answer’ that i think is true for and applicable to everyone
Instead im going to share some twists and turns in what ive been thinking about and learning
im hoping you can pick out something that’s true for and applicable to YOU
I was, and still am horrified by how many disabled people keep on asking me about my detailed diagnoses – It feels like theyre stuck in medical model.
but maybe they’re simply asking, does this person really know how I feel?
is that you?
I was, and am disappointed by how many disabled people stick to their ‘tribe’ with their sort of impairment : D Deaf Theatre, blind theatre and so on.
but maybe those Lucky people who’ve got a specific impairment have found some other people who not only think it’s reasonable to have the necessary accommodations, but have got systems sorted out?
is that you?
I just gave some examples of the social model not working in practice when it could have done.
but i also want to suggest that significant numbers of disabled people have challenges that are especially poorly served by the social model.
Tom Shakespeare has done excellent work on this – helping me convince deli it wasnt just me wanting more than the social model.
Tom was one of the provocateurs inspiring our theatre submissions.
And You lucky people have got the chance to hear him speaking in our festival on 22 nov at 2pm.
hes great – please dont miss whatever hes going to say!
Tom and i agree that people with pain, fatigue, brain fog, depression and/or anxiety are not well served by the social model
maybe that’s you?
i want to show you one example of the effects of fatigue.
IMAGE 5
here’s a black and white line drawing of a tiny scrawny version of … me.
its me decades agomy right leg is weirdly multicoloured to hint at one of my many diagnoses.
Im on a dull grey background to show just how cheery my life was then.
Im holding a keyboard and a phone – enormous next to my emaciated self.
theres text, which gets smaller lower down the image
and it says :
Wake weary, washing exhausting.
I’m still working so no one notices me fading shrinking.
Too tired to shop. Too tired to cook. Too tired to eat.
Shrinking fading.
But I’m still working, so that’s okay
[breath]
except its NOT ok being too tired to eat. or wash.
able-bodied people never think even for a moment about how difficult it can be getting washed and dressed – while i and many other disabled people get exhausted doing the so-called basics.
All those decades ago, I certainly didn’t label myself as disabled, and no one else did either
because I was working, my disabilities were invisible to others
and Also to myself
has that been you?
I want to make some points about this
First, about variability and Time.
I’ve aged with Multiple degenerative diagnoses – so I’ve got a lot more disabled than I am in this image
but i have better – and sometimes even Good days – or hours and minutes
plus Lots more bad – and really bad days – and weeks and months
i feel sure this is you!
Not that the benefits system understands this very simple point
And Maybe i didnt quite understand it either
After all, not many people become disabled in a single moment
when did You become Disabled?
Officially?
or In your own head?
Linked to this i want to suggest there’s not always a binary split between being disabled and not.
i want to – and do – claim and value my skills and strengths – as well as my disabilities.
do YOU do that? or not? and if not, why not?
jodie russell has made similar points about Madness not being a dichotomy – madness with a capital M i mean.
capital-m Mad people have been stigmatised and badly treated like Disabled people have.
And just like the disability justice movement, there’s a Mad justice movement – led by people with living experience.
If you want to hear more about these parallels check out the Starter podcast with me and jodie.
I knew all this – and more – when we started.
But I also knew that I didn’t know enough
So we asked what YOU thought.
here’s the image we used for our first Callout:
IMAGE 6
It’s on a bright yellow background with seven very different disabled people – they’ve got a range of visible and invisible disabilities.
they’re using different or no mobility aids.
There’s people with different ages, ethnicities and genders.
They’re in rainbow coloured clothing to include different sexualities
The Tall black woman in the orange dress in the centre is BSL signing: Speak out
The others around her are signing: We are listening.
And there’s overlaid text saying that too.
We were sent lots of interesting thoughts and ideas!
the responses were So diverse!
just like disabled people are so diverse
they Ranged from
I love the social model to
fuck the social model.
IMAGE 7
Lots of models other than the social model were suggested – i’ve listed them up on the screen:
affirmation model
functional model
hybrid model
inclusion model
social model
more
i think all these models have minuses as well as pluses
andto be honest, i took the number of models as evidence that none of them, including the social model, are The Right answer.
but maybe one of these models is right for you?
which one?
or do you think no model can add to or help with your unique-ness and variability?
we also got sent some perfectly practical points like:
BSL interpreters are routinely on the side of the stage – So you can’t watch the action.
though Personally, I think a good BSL interpreter Is the action.
Intersectionality
this was – and is – a key theme
for example one creative told us: I am a benefits/working class Muslim first generation Turkish Cypriot immigrant. When has a character or story encompassed all that?
we all want – indeed need – a mix of hearing, seeing and telling our truths.
surely this is even more important for those people and peoples who’ve been silenced for so long
here i want to also mention the podcast on intersectionality i did with the great Ashok Mistry.
Ashok shared how challenging it is for global majority disabled artists to get noticed.
He described himself as an ‘inauthentic foreigner’ and asked: when does one have the chance to speak about who one really is?
Ashok has often been asked – or i think forced – to throw himself in either a race equality or a disability pigeon hole – thereby blanking out a huge part of himself
Ashok says – and I agree – that there is still no effective deep-down scrutiny of the causes and effects – the vile causes, the vile effects – of race or disability discrimination.
Instead the insidious structural bias uses fancy excuses to keep people at arm’s length.
access exists only as an add-on to ensure the ableist and racist world can remain pretty much in its current form.
Next : Hierarchies
Some important points were made about hierarchies between disabled people –
You may have mobility privilege, neurotypical privilege, hearing privilege, communication privilege, intellectual privilege, non-chronic pain privilege, non-sick privilege and so on.
while others don’t have one or all of these.
which privileges do You have?
and How best to challenge ableist harmful stereotypes, without incidentally harming or marginalising those who the stereotypes actually do apply to?
theres an especial heirarchy around working – although surely, like disability and Madness, working isn’t a binary.
for example, i definitely cant work full time but I’ve been able – thanks especially to david, esther, grace and miranda in the theatre deli team – to be the curator for this festival
this was a great – and it feels o so rare, example of barriers being removed.
the social model working like it should.
Now
communities and families
these are practically really important for many disabled people
but there seems to be a cult – in modern western society – of the individual.
as well as the physical carers that some disabled people need every day, there is also another option around not going solo
that’s interdependence.
I discussed this in a podcast with the son-and-father team of fionnathan.
they share the skills of someone learning disabled, with someone not.
i am especially interested about how:
I was told: Being in the moment is a strength of cognition-disabled people.
‘Living experience’ is our expertise.”
And I know i could learn from this!
so, with the diverse responses and the extraordinary diversity of disabled people. do we have anything in common?
Do we, maybe, all struggle with stigma and grief?
Jan Grue has written o so well about this – and i discussed this with him in another of our podcasts.
I don’t know exactly what going to be jan’s next book – and do look to for it – but i do know its going to touch on the invisible work of disability – Some of which i’ve already mentioned.
i think there’s also invisible work around stigma and grief.
for all of our disabled selves.
this is especially difficult early on – when your disability may be invisible to yourself, like fatigue was for me
and it surely doesnt stop being difficult – as we all age and experience different griefs and different stigmas.
Have You got all this sorted out? Or not?
Please do share anything that positively helped you with any of this!
Also positively, i think that the other thing we have in common is that we’re not only disabled.
its not just about our deficits
or begging for / and being grateful for the small things we’re ‘allowed’.
So i Want to repeat my provocation (here’s an example of hierarchy – with me getting to repeat something i think is important):
[breath]
“We all need bread, but I – and maybe you – also need roses.
I – and maybe you – have to expend so very much of my life on even less than bread – on those ‘activities of daily not-quite-living’ that so many others never have to think about and certainly don’t get exhausted doing.
I – and maybe you – try not to think about how rarely I am noticed as human.
But I – and maybe you too – wont Ever Stop Insisting on Roses as well as bread.”
[breath]
what is roses for you? how do you, or could you, insist on whatever it is you want and deepheart need in your life?
[breath]
Now we’re going to have a short break before my discussion with David Ralf
[break]
Welcome back!
now i want to invite David Ralf, executive director of theatre deli in london and sheffield to join me.
Welcome, David!
[from now on this is just my questions]
can you describe yourself please?
how many years have you been working in theatre?
i think you’ve been interested in access for a while. What have you done before about this? was that more for audiences or creatives?
can you say more about what we did to try to make the festival more inclusive and welcoming – to encourage people to get involved?
how much time, energy and money did you have to spend on this?
in all the stages?[coming back to time and delays later]
Deli has 10 programmes every year. Are you going to keep on doing all this for every opportunity?
For our theatre callout, We wanted new theatre responding to the points and ideas we’d been sent – or the provocations – or anything else related to the social model
we got 80 submissions.
i thought that was amazing and brilliant –
but also Terrible as we were going to have to choose just 8.
We Tried to Ensure we weren’t replicating the hierarchies i spoke about.
We thought hard about intersectionality and other Marginalisation.
Could we – maybe – be a little bit of the social model as it should be – in action?
Do you want to say more about the selection process?
What other opportunities have deli offered those who were not accepted?
Could you speak more generally about intersectionality and story telling in theatre please.[different ways of telling different kinds of stories]
but please can you say more about delays and deadlines?
have you changed your mind about these? in what ways?
we will be presenting work in all stages of completion – from readings and first-tries to completed shows.
some shows which aimed for ‘completion’ had to be stripped back
Some workshops were delayed or postponed
and now im showing some of the ableist barriers affecting our festival:
IMAGE 8
bereavement
chronic illness getting worse
fatigue
hospitalisations
new injury
precarious housing
unsuccessful fundraising
you’ve told me: The show must NOT go on, if the artists can’t go on!
well thankyou for saying this!
It’s such a strong statement!
i do want to say thank you again – both personally and for my creative colleagues.
you didnt penalise any artists because of delays or changes to the programme
but is your flexibility going to continue and extend outside this festival?
Do you really mean The show must not go on, if the artists can’t go on!
on an ongoing basis?
most importantly how can this extend outside deli?
Do you think funders – or venues – understand what you and i are talking about? ACE will help disabled ppl some with the application itself – but do you think they and other funders and venues really follow it through? Are they properly long term inclusive?
How annoying was i keeping on suggesting adding things: proper digital access all the way though the festival, links with Euans guide, the podcasts, the google questionnaire you are ALL going to be asked to contribute to …
I asking this both to give an opportunity for everyone listening or watching to follow these initiatives up
and also for you to share how difficult it must have been keeping on being so responsive
here’s the links on the screen
IMAGE 9
Fully virtual festival
Euans Guide:
Podcasts
Google questionnaire
Now its your turn to speak: argue, cheer, complain – whatever.
the chat is open now – or put your virtual or a real hand up if you’ld like to speak
ive already touched on some questions to start us off -they’re up on the screen now
[read out first 4]
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1. Do we need/want a ‘model’ covering all disabled people – or something more responsive to our huge diversity?
2. How to recognise communities and families as well as individuals? Practically, including for/by arts organisations?
3. Intersectionality is huge. Is this truly about disability – or inequalities more generally?
4. How to balance all this with broadening access?
im guessing you’re not too surprised im going to add another question to these.
Ive said:
the medical model says doctors are gonna fix you and they haven’t
but i havent myself completed walked away from medical input
and one of our initial respondents said:
I think we should also be able to discuss our impairments if we want to, because like it or not, medical diagnoses are part of our living experience
Im more ambitious than this.
I want to challenge the medics to themselves adopt the social model with people they think of as ‘their’ patients:
so, going back to the 1981 call for us to participate fully in society
are the medics themselves creating barriers to this?
could they help reduce our many other barriers?
and how can You help any medics you deal with to move forward on this?
so question 5 is: how to get medics to adopt the social model?
thanks for listening and please dive in with whatever else you want to say