access in action

The artistic sphere is nowadays abuzz with terms like “access” and “inclusion”, with all and sundry jumping into the scene laying claim to these trendy words, but how many actually understand what they mean in practice, I wonder? No, I am not talking about the fluffy feel-good pulling-at-heartstrings stuff, or the tired and worn circus-style acts that purport to ‘include’ the disabled but are actually poorly contrived, inexpert displays of awkward disability tokenism. I am looking for concrete, meaningful and practical facilitation of access, and an inclusion that allows persons with disabilities to function from out of their individual optimal realm. Every person has the latter, regardless of what it actually is in shape, size, colour or form, we all each have our own little space, a Clement Space, in which we feel safe and from which we are allowed to emerge wholly ourselves, not broken or wanting to be fixed.

A working trip to the United Kingdom at the end of 2019 perfectly illustrated for me in real-time the essence of true, respectful, creative, meticulous and effective support – that is, dynamic access and inclusion in action.

The mission was to make contact with different artists with disability in the UK, fresh connections as well as established friends. I traveled with my collaborator, the project leader for this trip. He is a well-known figure in the arts, and has recently established himself as one of the prominent figures in the growing Arts and Disability field in Singapore. I met him in late 2016, when I first returned to Singapore, entering the arts arena as a practising multi-artist and researcher for the first time in my homeland. I have always preferred to work and travel alone, a style which suits well my organic way of creating, on-the-go, in-the-moment, fleshing out the unspoken as I move fluidly through invisible spaces, navigating a richly textured ‘live’ interaction with my environment and elements in time and place. On my own, I have a greater measure of control without need for worded explanation and exhausting extraneous human interaction. Working with this new collaborator has been a powerful learning journey, one that is still ongoing. Never a dull moment, always expanding boundaries, constantly questioning well worn traditions, and creating new ways of sensing and representing the tangible and intangible. We’ve had some dramatic differences, but honesty and transparency is the glue that holds us together, from strength to strength.

Advance preparation: My project leader began thorough preparations well before our trip – booking the air and train tickets, organising and scheduling meetings with the various people we were going to meet. He asked me many questions about my specific needs, and I was quite impressed (even astounded) by his meticulous attention to detail. It is difficult describing the needs of an ‘invisible’ disability, people either become wide-eyed in embarrassed disbelief or they nag and criticise me for being a too-precious ‘princess’. I have been so used to the normative world being insensitive and / or derisive that when I come across someone who makes effort to walk the talk with some semblance of genuine intention coupled with creative consideration, I am thrilled and in awe. Information proffered was received in a matter-of-fact manner, which I appreciate. No gasping, no ‘personalised’ comments of pity, no suggestions about yoga, meditation, vitamins or essential oils, and no criticisms or judgement. Just simple, straight-forward acceptance and a “let’s get to work” attitude.

Detailed administration: I find it ponderous and frankly irksome to have to deal with administrative matters, making contact, drawing up schedules and maintaining them, and making decisions when faced with changes in schema. These are the things that overwhelm me and take away huge chunks of my creativity. I was more than just relieved, I was brimming over with gratitude, that my project leader took all of that off my hands. He handled all emails (apart from my initial introductions for my own contacts) and scheduling of meetings, booked the train tickets in advance, even planned the routes we should take in the convoluted London Underground. All I had to do was follow him, present myself at the meetings with brains intact and contribute creatively.

Additional care and consideration: From the time we met up at the airport to check in, my project leader took care of every little detail. At our stopover mid-way in Doha airport, Qatar, we had to pass through security checkpoints on our way to the next flight. The queue was long and the crowds began to make my head spin. My project leader immediately found a short queue for the disabled and shepherded me through. He told the person manning the scanning machine, “Hi, my friend here is autistic and she has sensory overload from the crowd, could we please join this queue?” This is something I would never have thought of doing if traveling alone, I’d just have struggled my way through the massive crowd in near meltdown state. Quick thinking! I was so grateful.

I’ve never had such a great time using the dreaded London Underground as I did during this trip. I didn’t have to think about routes and trains, my project leader did all that. He even made the effort to be aware of my sensory condition, notice subtle changes (which I sometimes don’t notice myself), find empty seats and the least crowded spots, all of which are not at all simple feats in busy subway carriages. Now, I have to say that some disabled people might mind this kind of care and think that it is overbearing, but for me, I felt a huge sense of relief, not to have to deal with the stress of navigating the confusing chaos that is the London Underground.

Each time we had to catch the train out of London, all the ticketing and schedules were planned in advance. Nothing left to chance. All that I needed to do was to deal with my own little bubble of sensory reception and reaction, and even that, my project leader was careful to take note of my sensory state.

He even helped me carry my shopping, and when I had to search for waterproof boots, he found the perfect pair for me after he saw me becoming overwhelmed by the dazzling array in the shop.

Comfortable accommodation: It was early winter, so not yet too cold. In fact, I was a little over-dressed in the warm stuff. I hadn’t been back to the UK since 2013, when I flew solo to present at a conference at Oxford University and then performed Scheherazade’s Sea at the World Stage Design Festival in Cardiff. This time, we were based in London. Dear project leader found a cosy little mini ‘hotel’ five minute’s walk from Paddington Station, perfectly located. From here, we made our day trips to Canterbury, Liverpool and Oxford.

We stayed overnight in Oxford because I told him I wanted a bit of extra time there. My project leader chose a small little hotel near the train station, for easy commute. The breakfast was simple but delicious anyway. Oxford is my favourite city in the UK, I spent a lot of time there many years ago, in a different time and era of my life. We visited an old friend, which was lovely, although I wish we didn’t have to rush so much. Even then, we managed to check out the new mall, tucked into delicious food there, and returned to London armed with seven large Moroccan woven basket-bags from a shop at the corner of the mall, which my project leader spotted and which he helped me to carry.

I appreciated especially the thoughtfulness regarding accommodation – no roughing it out in any grungy hostel room, I could not have survived the sensory assault of a students’ hostel, and my project leader was mindful of it. He did not stinge on sensory friendly accommodation, he did his homework well in advance, and he even sent me the website links with photos ahead of time, so I did not have to deal with nasty surprises. It is important for me to have a restful night’s sleep, in a clean space that I can have all to myself, and is easily accessible to someone with arthritis. He ticked all those boxes without being told to. Respect. He showed me respect and I respect him greatly for that.

One of the highlights in this trip for me was meeting Sonia Boue, autistic multi-form artist based in Oxford, and some amazing members of the Shadowlight Artists, at the Film Oxford premises which was just around the corner from Sonia’s studio. I met Sonia online many years ago, we’ve communicated quite a bit through the years, but this was our first in-person meeting, and Sonia and I just couldn’t stop talking from the moment we stepped into her studio. Meeting the amazing Richard Hunt was such a thrill and honour at the same time. I hope very much that we’ll find an opportunity to work together some day soon.

I cannot describe that feeling of fullness, wonderment, pure unfiltered joy that I have each time I revisit Oxford. My sensorial memory retains the sights, smells, tastes and textures – yes, even the air smells and tastes unique – of the small details, the street corners, the cobbled walkways, the way the light shimmers, the colours and the soundscape that I knew and loved so well. It was raining when we left Oxford, and I was exhausted, but thankful. Little things matter, they make very big differences to the quality and strength of the day.

Our journey to Canterbury was most pleasant too. At the University of Kent, we met with a group of autistic artists, including author Katherine May, and that was another full-on afternoon talking about our work and sharing insights. Thank you so much, Professor Nicola Shaughnessy, for hosting us. The sandwiches were delicious too, though I couldn’t eat much because I was too excited! Afterwards, we had a brief walk around the town and peeped at the cathedral, which was undergoing refurbishment, before we scuttled back to London.

Our work day didn’t begin till 10am, when my project leader would knock on my door and we’d set out together to wherever we needed to go. That meant that I had time on my own every morning. I am an early riser, I love the early mornings when the air smells revived and the sensoryscape feels ‘reset’, ready for the day to unfold. I would walk around the surrounding area, pop into Marks & Sparks foods at Paddington Station for takeaway breakfast and eat it in my room while catching up on the news on telly. I even found a larger Marks & Sparks full shop where I did some morning shopping!

Another highlight of the trip was meeting Sumita and Andrew, two brilliant people who are part of the team behind the amazing Pablo cartoon series about an autistic boy and his imaginary friends. Pablo is now my favourite cartoon, after the huge let down by Sesame Street’s cosy-ing up with the dreaded Autism $peaks. I am constantly amazed at the talent of some of my fellow Autistics, such an honour and thrill to meet these two! And Sumita even gave me a little present, which I have hung up in my bedroom. It catches the light beautifully too!

On the eve of my last day in the UK, I met up with the fabulous Alex Forshaw! We had a light brunch at the Wellcome Collection cafe, and then we spent time checking out the exhibits. It was lovely to connect in person with Alex. I ‘met’ Alex online around 10 years ago through our blogs, and we’ve communicated regularly since. Such a thrill, and what a peaceful meet up too! Thank you for traveling into London to meet us, Alex! And dinner at the Chinese noodle place was delicious, thanks to dear Mr. Project Leader for chatting up the maitre d’ in fluent Mandarin!

We spent 9 days in the UK. It was a trip to remember. This is what access and support should look like. When the person being supported is able to trust the one supporting, and this trust unpacks itself with a blend of professionalism and genuine kindness and consideration, so that the supported person is able to give full attention to the work at hand. Not all needs are the same, there is no operational manual. Some autistics like taking control over their surroundings and movements, as do I, but I have also learned something else: the rich luxury of optimal access. I’ve wished for this kind of facilitation for a long time – the kind that will free me almost completely from cumbersome tasks that I am terrible at, remove me from activities that trigger a lot of anxiety which drain me of creative energy – so that I may direct my fullest energies into the tasks at hand.

My project leader, who has now become a trusted friend, took care of everything every single day, from 10am onwards, all I needed to do was follow, until the end of the day when it was time to retreat into my room. He even decided (at my request) where we would go for lunch and what to eat. I gladly left all the nitty gritty to him. My mind is very singular in focus, and my body is so hyper sensitive that my autoimmune condition is relentlessly triggered and I have to manage that too. Hence, I am relieved not to have to multi-task more than I absolutely must..

Each person presents with their own lived-experience of their unique set of circumstances and functioning needs. I was trepidatious about embarking on this trip at first, I wasn’t sure about traveling with someone else. My fears were put to rest, and the trip was fruitful and pleasant above and beyond my expectations. Access and inclusion is not a one-size-fits-all formula, it is a larger comprehension of what it means to embrace difference and it is also about approaching each disabled person as an individual with a unique set of needs. Some disabled people would not want or like the kind of care shown to me by my project leader, they may want much more authority over the goings on and other administrative tasks. For me, though, it was not a loss of control, but rather a liberation of creativity, and a cogent empowerment.