Peer Review: Jhinuk Sarkar & Robert Softley Gale

Jhinuk Sarkar (She/Her) worked as a Disability Adviser at UAL, and before that as a programme coordinator at Shape Arts (a disability arts organisation focusing on supporting visual and performing arts made by disabled artists). During her work at Shape, Jhinuk gained experience of supporting high profile disabled artists and disability-led arts organisations, delivering commissions for the London 2012 Cultural Olympiad.

Jhinuk currently continues her practice as an Illustrator, teaching Illustration in higher education and teaching on the Inclusive teaching & learning unit of UAL’s PG Cert course. She is also part of UAL’s Academic Study Support team. She works at House of Illustration as part of the freelance education team to deliver workshops for families and schools including Deaf schools. Jhinuk is also Head of Community & Accessibility at Turf Projects, where she advises on access for Turf’s programmes and supports learning disabled artists in an arts collective called MOSS.

http://turf-projects.com/moss/

http://cargocollective.com/paperfig

When I was asked to write this Peer Review, I was panicked a little, in all honesty. I’ve worked in Disability Arts, with disabled artists and disability-led arts organisations for a few years now and whilst I have knowledge of barriers to education and the Arts in particular from this work, I am always, always, always learning. 

 

That won’t end.

 

I have not long known formally about my own diagnosis of Dyslexia, and I still struggle with knowing where I place that within my work. How do I present my period of undiagnosed study experiences to others, conscious of my neurodiversity not being seen as ‘an excuse’ for poor writing? 

 

I fear writing, I feared this request. 

I heard my mind racing with a run of questions: 

‘Do I have enough expertise?’

‘I am not sure I have notable lived experiences like other disabled artists I’ve worked with.’

‘How can I justify my position within the valuable collection of voices and texts in this Terms of Reference (ToR) publication?’ 

I hope what I am going to say will be enough. I definitely think what I am about to say should be notable. 

 

My review starts with my own experiences.

 

I don’t consider myself as a natural Academic, yet I began teaching recently amongst peers who have worked in academia for years and have found their confidence to do so by finding routes in, much earlier than me. Whether those people were non-disabled, disabled, white, or a person of colour, younger, older, non-binary, female or male, they navigated the system earlier than I did, and had to do so by jumping through ableist, white, middle-class frameworks that are often the default experience. I’m glad I came to teaching later in life because otherwise, I wouldn’t know about Disability Arts. 

 

I tell you I am not a natural academic not to devalue my teaching ability, but so that you know that here, in this peer review, it has to be straight-talking. I want my review to be accessible as I would find it accessible for me to read. I may use a reference here and there, but it is placed mainly through experience-based knowledge. 

 

I think through making, doing and listening.

 

It was painful, cathartic, rage-inducing, exciting and a whole range of other feelings to experience the submissions in this publication. Whilst I see the struggles and breakthroughs explained, I also see the fight. Overall I see this journal as a powerful call to action which I will explain further. 

 

As Maria Oshadi explains in her interview in this journal, we need less abstract awareness born from reading, and seek to create more action: ‘… in some ways, things were much more innocent 20 years ago. Now there’s more awareness, but I feel the danger is that this level of awareness can be theoretical and some people don’t see their own collusion with racism, ableism and classism (Oshadi, 2019).

 

Drawing comparisons of social justice between race and disability and the not so ‘new’ in-betweens. I have heard and even seen the prejudice people experience from disclosing their disability. But when I started working at Shape, I began to understand an experience of prejudice that I was unfortunately all too familiar with – racism. When it comes to racism, sexism and ageism I believe there is unequivocally no excuse, and unbelievably, we are globally, and as humans, still travelling on a path of understanding that fully.

 

I think I only came to understand more deeply that the same injustice applied with ableism and attitudes towards disability when I started working at Shape. This realisation came from working closely with disabled artists who shared similar experiences impacts upon their confidence as a result of facing barriers relentlessly. Removing barriers to these discriminations is where the Equality Act (2010) is meant to uphold some of these basic human rights for people living in the UK. In an extremely potted history, the Act (established as late as 2010) is a progression from the 1995 Disability Discrimination Act which was formed in the UK as a result of the Disability Rights movement Direct Action Network (DAN). DAN formed and was in action during the 1980s and 90s. This law has taken steps towards a more inclusive outlook by combining the nine personal characteristics that cause us to be victims of discrimination into the Equality Act we know today.

 

Although this is progressive, I think there is plenty more room for development.

 

This journal reveals the room for improvement – it exposes the gaps and nuances we need to recognise more openly.

 

We want the intersections addressed. 

 

Just as the submission from Eleanor Lisney of SISTERS OF FRIDA so aptly provokes readers to challenge within themselves in ‘when gender, race and disability collide’ (Lisney, u.d.). We need to reframe the hidden elements that cannot stay hidden forever. Socio-economical, hidden impairments and further development on the Mental Health Act needs to be actioned immediately – our world has moved on a lot from its birth in 1983. I strongly believe the Act needs to explicitly include areas of our lives such as a duty of care with regards to social media use and cyberbullying, both of which were non-existent in the ’80s.

 

Entering conferences with invisible impairments and invisible racism: 

Although our world has moved on in terms of technology and accessibility, our attitudes need an almighty thrust forward to catch up. I recently presented at a conference addressing mental health combined with creativity. Myself and co-presenter were two of 3 visible people of colour that I recall being at the conference (that’s including participants). It caused me to feel a low level of anxiety. A series of unnerving experiences at the conference helped that familiar gaslighting feeling to ensue, and I came away wondering if I had it all wrong. Maybe people of colour didn’t experience long-term mental health conditions, and only white people do? But maybe not, otherwise, resources such as Black Minds Matter and articles such as Merissa Hylton’s ‘Mental Health & Disability in the Arts’ in this journal, would not exist.

 

Who and what is more marginalised? 

I don’t think we should ask this question, but yet it feels like that is what ableism asks people to decide an answer for. This is a complex problem to unpick, but I think this is amazingly unpicked in this publication. Kerima Cevik’s article exposing the erasure of blacks from histories of autism is one of many examples to read on this. It’s honest, insightful and rich in perspectives to allow the reader a broader view on disability. We can be made to feel marginalised in many ways, we don’t have to pick which one feels the most painful or important, they are entwined.

 

Closing the Gap – Accessible Resources

We can never stop learning about accessibility and disability within the framework of inequality because as long as the world keeps changing as rapidly as it has in my lifetime, history is documented in skewed perspectives. A prime example is the two current affairs of the world at the point of the production of this journal: 

 

1. The COVID-19 pandemic

The coronavirus has highlighted how unprepared we are in our structures on so many levels. But as soon as the economy was affected, guess who was one of the first demographics of people to take cuts, a hit on personal income, access to vital facilities, and generally have a reduced quality of life? Disabled artists. As a response and call to action the ‘#WeShallNotBeRemoved’ UK Disability Arts Alliance was formed by UK disabled artists and cultural leaders seeking recognition of this hit and began with an Open Letter to the Secretary of State for Culture to support disabled artists during and after COVID-19.

 

2. George Floyd’s murder and Black Lives Matter movement

Further unpreparedness that our ableist society needs to work on is access to resources.

 

In the devastating and stark reality of police brutality in the US and racism costing lives highlighted by the murder of George Floyd, where are the structures to fund accessible resources supporting education on this? As a result of the news of George Floyd and Black Lives Matter, the floodgates opened of sharing anti-racist resources on social media. Though extremely important that the sharing began, at times it is overwhelming for many, including myself. In absorbing and sharing as many resources as I could, it revealed to me that there was a sheer lack of accessible materials available to explain what was going on. I found one easy-read document developed by a freelance practitioner (who was unpaid for developing it but did it out of need because they were supporting a black learning disabled person). They created this resource out of necessity on their own time and made it an open resource, made it honestly up for review, and asked for help (French, 2020).

 

I believe this is a good model of practice, to be honest, and open in supporting disabled creatives, and asking for help to understand user experiences. Why should anyone assume they know what is best for disabled people, especially if you are non-disabled. 

 

Why not just ask?

 

Provocation in this journal and Disability in the future

‘The 1980s and 1990s were a thrilling time in terms of disability activism and saw so much change, but I think over the past couple of decades we’ve lost momentum’ (2018, Lisicki)

 

Please drink in the incredible work in this journal that’s here to bring us up to date. Value the sharing of these experiences, the thoughts and intersections surrounding Disability portrayed in this journal. Let’s pick up the momentum again. 

 

The Shades of Noir team has given you a huge helping hand with this Terms of Reference. These are now, more than ever (especially in the current climates documented above), important to be heard and acted upon.

 

Do not be fearful of failure so much that you do not act.

 

Act. Ask. Actively listen. Act more. And repeat.

 

We learn so much from our failures if we let ourselves. It takes courage and tiresome efforts to embrace these failures and use them as part of your journey, but it is worth-while work. 

 

Please don’t take my plea to act as an instruction to carry out actions aggressively. An action can be performed in varied ways. You can be quietly revolutionary. You can be a Shy Radical (Ahsan, 2017). You can create online blogs such as PhDisabled (featured in this journal) to instigate gatherings of new communities that need mutual support. You can act by listening. 

 

Active listening is always necessary because it creates empathy, not pity.

 

I agree to ‘Piss on Pity’ (Disability Arts Movement DAN,1992).

 

I disagree with sitting back and let this wash over you. Everyone can do something to improve inclusivity and consider access in all they do. You know what is accessible to you, you know what barriers you’ve experienced, still experience, and may yet experience. Everyone can feel disabled at some point (Timlin and Rysenbury, 2010).

 

There are still many challenging spaces to navigate around accessibility where we would hope they would feel safe. There are still barriers to allowing disabilities to be visible and just be, as part of the fabric of humans, without a motive to be ‘inspirational’ or seen as angry, as explained so honestly in Elora Kadir’s account in this journal. Our attempts to bring the world into balance are not easy, it can be exhausting, disappointing, nerve-wracking, exciting, and hopeful. 

 

But I hope you’ll agree with me, that it feels the right way to act. 

 

Alongside this need for balance, please take time to digest and practice self-care whilst reading this Terms of Reference.

 

I’ll leave you with three thoughts from my own experience with Disability to process:

On a fun note: 

Please search for my ‘P45 performance’ on disabled sculptor Tony Heaton’s website, where I ‘bonded’ with his artwork ‘Shaken not Stirred’ (a piece originally created for the 1992 Block Telethon protests as part of the Disability Arts Movement). ‘P45 Performance’: http://www.tonyheaton.co.uk/mixed-media-film.html#m-7

On overcoming anxiety:

To write this peer review took more anxious energy than I usually require, especially compared to tasks that don’t need much original writing. The way I have found myself overcoming this is simply to give myself time. I started drafting earlier and created it in many stages, I let texts ‘breathe’. I benefit so much by leaving my written work alone to forget about it before reviewing it again (easy for me to do with my short-term memory). Time in reality, is not always on my side, so I often find myself working hard, long hours to get texts ‘right’, but it is always worth it.

 

Something else works to overcome anxiety for me, and that’s to be brave enough to share my written work with people I trust. I look back to my pre-diagnosed days and see that I did this anyway: checking my CVs and applications with my sister and my best friends. But I always feared sharing with work colleagues, until this review, where the Shades team were patient and showed me they understood how I write and valued it (so much so that they advised me to write about this strategy here). 

 

Having that support feels different from not feeling good enough, it feels like I’m learning how to better articulate myself in writing, and that’s incredibly positive. I don’t think I will ever fully enjoy writing, but I know the purpose of it is important to communicate powerful messages such as those in this Terms of Reference – and I want to be a part of that. These mixed emotions I can feel after the anxiety has faded can be summarised in this embroidery of a Bengali proverb (stitched by my mum, aged 8).

 

It reads: ‘The endless desire which I have in my small heart has not, is not, and will not be satisfied… ever’

 

And finally:

On investing in opportunities:

I see every option to learn new ways to create in my practice and be more inclusive as an opportunity. Accessibility of any information can always be improved. I reflected upon that recently in a piece of work where I painted on a window, using collective nouns to consider creative processes. I drew and painted on both sides of the window, to signify that there are often hidden processes:

 

Laughter, fun, self-care and care for others through listening.  These all allow us to thrive in what we do. I hope that after reading this journal, what you do in your everyday sees you passionately endeavouring to integrate removing barriers for disabled people.

A Note from Robert Softley Gale.

Robert Softley Gale (BOP Artistic Director) is recognised as a key player in the disability arts scene in the UK and on the world stage and his presence gives authority to Birds of Paradise’s status as Scotland’s premier disability-led theatre company. With over ten years of experience in diverse roles including disability rights activist, actor and performer, writer, artistic director and advocate of equality of access to the arts for disabled people, Robert has appeared in many productions and has developed his own artistic practice – including instigating, co-writing and performing in ‘Girl X’ for the National Theatre of Scotland, directed by Pol Heyvaert of Belgium’s Campo. His award-winning writing debut and solo performance – ‘If These Spasms Could Speak’ – was a hit of the 2013 Made in Scotland programme and has subsequently toured internationally to countries including Brazil and India. Robert joined Birds of Paradise as Artistic Director in November 2012.

Birds of Paradise Theatre was formally constituted as a company in 1993, becoming Scotland’s first touring theatre company employing disabled and non-disabled actors. Since then they have been led by a number of visionary leaders and in 2012 became disability-led through the appointment of several disabled Artistic Directors.

My first reaction to reading the incredible articles that exist within this publication is to notice the gulf that exists between disability as it is understood by much of western society and how we as disabled people are trying to define it in relation to our experiences. 

 

Simplistic narratives prevail.

 

I am writing this amidst an international lockdown, wherein disabled people are acutely politically vulnerable and pathologically at risk.

 

I find it difficult from this perspective to see how we bridge such a divide – while we are all debating our models of impairment and disability and trying to push our thinking forward, the wider population (in my experience) are still viewing us as at best vulnerable and more often than not disposable and irrelevant – the last to get access to ventilators and medical assistance at a time of crisis. This isn’t meant as the hopeless downer that it might first appear to be – I’m really trying to widen the angle of my lens. 

 

What is the role that we can play now, in 2020, in the hope of widening inclusion and access within society?

 

My intention was to give a professional response to the articles I encountered in this publication, but they have touched me on a much more personal level than such a response would allow me to do justice to. So I’ll respond to them in professional and personal terms.

 

All we can ever really do is share our stories – tell people about our experiences of the world in which we live with as much humanity, honesty and empathy as possible. We can not make the outside world see us in a certain way – we can’t force them to stop desexualising or fetishising us, to stop patronising us, or to stop ‘othering’ us. All we can ever do (I truly believe) is share a few of our truths, welcome ‘others’ into our world and invite them to look around for a while.

 

I also recognise that I am at the softer end of the spectrum – I am still focused on engaging with people and making them laugh. I was once accused of being an ‘Uncle Tom’ – a person regarded as betraying their cultural or social allegiance – which I dispute wholeheartedly. I fully recognise the need for anger and protest, the need to provoke and challenge and at different points in my life and career I have used those tactics. However to me – in the context I find myself in today – I feel we need to make our stories engaging and accessible to the world; we need to give others good reasons to want to hear about our lives and to know who we are. This isn’t about diluting our politics or protecting our audience from any harsh realities, it is about recognising our role in extending an attractive invitation.

 

All of this is a long-winded way of justifying why I work in theatre and why I make the kind of work that I do. There’s always a tension for me when I’m thinking about the audience for the work that I make – am I trying to educate, inform, entertain non-disabled audiences, to show them new narratives that will make them think about the world differently? Or am I trying to do the same for disabled audiences (and their allies) while also giving them stories to identify with – a way of seeing their experiences writ-large? 

 

Inevitably I am trying to do both, which I think this publication also does incredibly well.

 

What I get from reading these articles, poems, responses and so on is the sense of a maturing disabled narrative. For a long time, there was a perceived pressure on disabled people to present their experiences in a certain way – the Social Model was seen as the answer to all woes and any deviation from it was to betray your tribe. But within these stories, I have read about suffering (because we do indeed suffer) as well as achieving (we do indeed achieve), about shame (a universal human emotion) as well as pride. As a movement, it now feels as though disability culture has developed to the point that we can hold contradictions and complexities, which is surely a good thing. Whether the non-disabled world can deal with such complexities is another question and a difficult one for us to answer right now.

 

A personal moment of growth in my disabled identity came while reading Eli Clare’s ‘Brilliant Imperfection: Grappling with Cure’ (Duke University Press Books (3 Feb. 2017)). Recommended to me by the amazing disabled choreographer Claire Cunningham, Clare’s book spoke to my experience of the inner turmoils that living with an impairment can bring. These personal battles and challenges are something that I learnt from an early age to hide from the world around us, even/especially from our own families. My reasons for hiding them were complex but included the sense that non-disabled others couldn’t and/or wouldn’t understand, and so it was down to me to carry these ‘burdens’ and to face these challenges alone. It was only in meeting other disabled artists that I felt I had found my people and suddenly a sense of the ‘common fight’ became tangible to me. 

 

I hope others can get the same sense from the contents of ‘Disabled People: The Voice of Many’.

 

I also get a strong sense that we’ve become better at knowing about and articulating what we need from the world around us. Whether this comes in the form of Sky Cubacub’s accessible and gender-affirming fashion or Elora Kadir’s experiences as a disabled student operating in a deeply hostile built environment, my conclusion from reading about these experiences is that we know ourselves better now as disabled people than we ever have in the past. 

 

I believe our challenge going forward is to keep articulating our experiences in ways that the wider society can fully engage with. 

 

While we can all see the intersectional elements that are at play when Rayvenn Shaleigha D’Clark talks of their experience of neurodiversity within a racial context, I wonder how we can continue to make such stories relatable, and how we can really open up our world(s) to people who might have never considered our existence before. 

 

As I’ve said above, it is surely only by telling those hidden stories – such as those outlined by Kerima Çevik – that we can really find a way into the wider cultural landscape of the societies in which we are living. 

 

More of this please!