A Note from Jhinuk Sakar

Jhinuk 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. The commissions were offered through a programme and festival called Unlimited, which carries on

today (www.weareunlimited.org.uk). Unlimited

and Shape gave Jhinuk awareness of disability issues in various capacities and social justice. Shape provided her with experience of assisting with disability equality training in Brazil in anticipation of the following Cultural Olympiad in 2016. Her work at Shape was always in partnership with other disability-led creative organisations such as Heart n Soul, Candoco, Pallant House Gallery, DaDaFest, Graeae Theatre, Drake Music and more.

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.

turf-projects.com/moss/ 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 nondisabled, 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 straighttalking. 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 80’s.

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.

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 have 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 worthy 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:

1. 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’: www.tonyheaton. co.uk/mixed-media-film.html#m-7

2. On overcoming anxiety:

To write this peer review took more anxious energy than I usually require, especially compared tasks that don’t need much original writing. The way I have found myself overcoming this is simply to give myself time. I start 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

3. 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. Bibliography:

Black Minds Matter. Available from: https://www.blackmindsmatteruk. com/ [Last accessed 18/6/2020]

George Floyd & Black Lives Matter – Accessible Summary. Available from: https://www.jade-french.com/news/ george-floyd-and-black-lives-matteraccessible-summary-draft-1 (French, 2020) [Last accessed 18/6/2020]

Design for dementia - Royal College of Art’s Helen Hamlyn Centre. Avilable from https://www.rca.ac.uk/research-innovation/ research-centres/helen-hamlyn-centre/ research-projects/2010-projects/designdementia/ [Last accessed 18/6/2020]

Piss on pity: How a new archive captures the radical spirit of the Disability Arts Movement. Available from: https://www. independent.co.uk/arts-entertainment/

art/features/disability-arts-movementnational-collection-archive-barbara-lisickitony-heaton-a8416036.html (Welsh, 2018) [Last accessed 18/6/2020]

‘Shaken Not Stirred’ and ‘P45 performance’ by Tony Heaton. Available from: http://www.tonyheaton.co.uk/ mixed-media-film.html#m-7

Shape Arts. Available from: https://www. shapearts.org.uk/ [Last accessed 18/6/2020] Shy Radicals: The Anti-Systemic Politics of the Introvert Militant (Ahsan,H. 2017)

To define or not define: the dirty ‘disability’ word. Available from: https:// www.disabilityartsonline.org.uk/ editorial-blog?item=2338 (Hambrook, 2014) [Last accessed 18/6/2020]

UK Disability Arts Alliance ‘We Shall Not Be Removed’ responds to the current crisis

https://disabilityarts.online/magazine/ news/uk-disability-arts-alliance-we-shallnot-be-removed-responds-to-the-currentcrisis/ [Last accessed 18/6/2020]

Unlimited disability arts commissioning programme. Available from: https://weareunlimited.org. uk/ [Last accessed 18/6/2020]

We Shall Not Be Removed. Available from: https://www.weshallnotberemoved. com/ [Last accessed 18/6/2020] When disabled people took to the streets to change the law (Rose, D. 2015) [Last accessed 24th June 2020]. Available from https://www.bbc. co.uk/news/disability-34732084