Chronic Illness – Tulpa Magazine

Singin’ in the Pain: A Disability and Chronic Illness Cabaret

Attending a show with ‘Disability and Chronic Illness Cabaret’ in the title, I was ready to experience something remarkably different from the staple Fringe offerings; however, nothing could have prepared me for the unstoppable train of emotions that was Singin’ in the Pain.

Singin’ in the Pain empowered women of all abilities, restrictions and restraints, shapes and sizes to show what they are made of. These self-coined disabilibabes and chronic cuties were not simply performing for the sake of performing, but providing an honest rendition of the struggles they face day-to-day.

Set centre stage of the bar-theatre hybrid that is the Nexus Arts Venue, this stunning display of passionate story-telling simply blew my mind. Presented by Diana Divine, cabaret producer, teacher, and performer and teacher at Hot Sauce Burlesque, the show was a sexy and empowering display of physical and emotional human strength.

Full of impressive and award-winning entertainers, the show was a devastatingly and hauntingly beautiful homage to the pure resilience of humans living with disabilities and chronic pain.

I experienced hair-raising vocals, racy costumes, seductive booty bumping, and acts ending with tantalising tassels. Every single movement was meaningful and came straight from a place of raw vulnerability. Get ready to leak from both eyes at this intimate peak at the lives of so many inspiring humans.

The show was accessible to people of varying abilities, and the session I attended was Auslan interpreted as well as a Relaxed Performance – a welcoming, sensory-reduced environment for patrons with a learning disability, and/or sensory and communication difficulties.

I would recommend this show to absolutely everyone over the age of 18. I will forever be in awe of the glittering beauty and strength that every single performer displayed on that stage, dazzling the audience one act at a time. I give this show five, well-earned stars, because it was a sensational experience that I would see again and again.

5 stars

Words by Sarah Ingham

Singin’ in the Pain’s season has ended

To find out more about disability cabaret click here

Singin’ in the Pain: A Disability and Chronic Illness Cabaret

The premise of Justass League’s Singin’ in the Pain is innovative. It’s a burlesque show based around disability, chronic pain and mental health being two disabilities covered. Like the disabilities, the acts themselves were diverse which included fan dancing, singing, and more.

The performance was deeply personal, the performers spoke of their pain, struggle, and trauma. Be it through singing about mental health or society’s views on what a disability should be, it was an incredibly emotive performance. They opened up about their vulnerabilities and themselves to a wider audience. It was beautiful and empowering to see this unfold.

The stand out performer for me was US disability advocate and burlesque performer Jacqueline Box. Performing two acts, Box gave performances that were jaw-droppingly sexy both from her wheelchair and the ground. As she danced, comments from non-disabled members of society appeared on a screen behind her. Some of the comments included were “You don’t look disabled” and “Have you tried walking around?”. She screamed about her trauma and society’s views on her disability while continuing to dance and strip down. Having a disability myself, I connected with her words as they hit close to home.

Another standout performer was Madam Savage, who spoke of chronic pain and diabetes. Her portrayal showcased how having these disabilities has affected her life, right to the bedroom. She even incorporates her daily diabetic treatment into the act. This was both an interesting and unique twist to the performance.

A must-see performance at the Fringe, Singin’ in the Pain conveys so much emotion and trauma, spreading a message of empowerment to the people with disabilities viewing it. Singin’ in the Pain is a unique, wonderfully crafted burlesque performance.

4.5 stars

Words by Cameron Lowe.

To find out more and book tickets, click here.

In Conversation With: Alison Paradoxx

‘Floral Peroxide is a personal account of my own journey through the medical system, and navigating society as a whole, in a chronically unwell body,’ says 2016 Poetry Slam Championship Alison Bennett, explaining her debut Fringe 2019 performance: Alison Paradoxx presents Floral Peroxide.

Floral Peroxide explores disability using performance poetry, sound art, and dance to tell her story. ‘As a disabled and chronically ill artist,’ says Bennett, ‘I explore the paradoxes of disability, and the societal desire to ‘fix’ the broken self. My work articulates injury, and trauma through metaphor, sound, and visual theatre.’

Floral Peroxide is based primarily on Bennett’s final diagnosis: Hypermobile Ehlers Danlos Syndrome (hEDS), which she’s had since birth but wasn’t diagnosed until she was 40.

‘It was my chance to reclaim my identity and construct my own narrative of how I see myself in the world around me. I was sick of other people’s narratives for my life, and, as a poet, naturally began to ‘write what I know’, for me – what started with a lot of anger, and resentment, ended in a journey of acceptance, and understanding.’

Bennett has collaborated with other artists like 5000AD (sound artist), Ian Gibbins (video artist) and Angelique Joy (costume designer) to bring a multimedia experience to Floral Peroxide. The multimedia experience of the performance was ‘motivated by this desire to create performance art that is inclusive, and accessible to all, regardless of ability.’ She also said it came from events she’s performed at which are inaccessible to a number of people with disabilities.

In the media release for Floral Peroxide, Bennett says there is a societal desire to ‘fix’ the broken self. This is to represent society’s view that someone who is ‘broken’ can be mended. She also says it comes from years of trying to explain her pains and disabilities, which have included severe spinal scoliosis and surviving a house fire with second-degree burns. ‘The western world has a majority viewpoint of disability as being a flaw that needs to be corrected, rather than a society that needs to adapt to change!’

When asked about what she thinks about the representation of disability at the 2019 Adelaide Fringe, Bennett said, ‘I feel that 2019 has been a stand-out year, in regard to forging forward with better access for artists, and audience members by Fringe as whole, and I can only see that this will be a positive in enabling other disabled artists to create work, with the Fringe festival in mind.’

She is happy with the inclusion of the Accessibility Champions, an Accessibility guide, and the work by the Fringe’s Access and Inclusion Officer. However, she says it still has a long way to go in giving disabled artists the required needs to be part of any large festival. She would love to see a bigger representation of disability at the Fringe in future years.

If you are interested in seeing Alison Paradoxx presents Floral Peroxide, it will be at The Libertine by Louis on February 23-24. For those interested in learning more about health/disability at the Fringe, be sure to also check out the Social Change Guide to the Fringe by the Don Dunstan Foundation. A link to the signup page can be found here.

Interview by Cameron Lowe

The World Was Whole

The World Was Whole
Fiona Wright

I found out about this book during the hazy final days of editing my thesis, a body of work all about Fiona Wright’s first essay collection Small Acts of Disappearance (2015). My first thought was, ‘Oh no, now I have to go back and mention a book I haven’t read so my research is up to date’. It wasn’t until this year that I felt ready to tackle another essay collection, especially one by an author I’d studied so intensively for a year. Boy am I glad I did. Nonfiction lovers: this is a must-read.

In many ways The World Was Whole acts as a sort of sequel to Small Acts, though the two can still be enjoyed on their own. At the centre of both books is Wright’s personal experiences living with anorexia nervosa and anxiety. In The World Was Whole, Wright uses her personal experiences to explore the modern world’s relationship with the home. She doesn’t look at the home as just the physical buildings we live in, or the spaces we interact with, but also the bodies we inhabit and how they can represent both sanctuary and uncertainty.

Throughout the essays in The World Was Whole, Wright examines her own life, which is built heavily upon repetition and routine, both of which are upset constantly by the circumstances of her health and finances. Like many millennials, particularly those with unstable financial situations, Wright rents. This means she is almost always on the move from house to house, from space to space. Forever trying to settle in and make these spaces her own, only to be flung elsewhere by circumstances beyond her control. She gets to the heart of the constant anxiety and uncertainty of renting when she writes: ‘I want to be able to get attached to a place, without knowing that my presence there is always subject to someone else’s needs or whims’.

Another strong aspect of Wright’s writing is her exploration of her own experiences of chronic illness. Within literature there is a tendency towards stereotyping the sick, particularly the mentally ill and female, as helpless victims or self-obsessed attention-seekers. Wright brings a strong current of humanity to her writing, showing what her lived experience of anorexia nervosa is like. She isn’t afraid to critique the limitations of Australia’s healthcare system, which often causes a great deal of grief and frustration for people struggling with chronic conditions. Importantly, Wright describes her illness in terms of the constant shift back and forth between getting better and getting worse, and the anxiety and fear that comes with this flux. ‘On the first day in the hospital,’ Wright writes, ‘I curl on my bed and cry for a full hour after every meal, and I keep thinking, I can’t do this, I can’t do this, I don’t think I can do this. I panic at the piece of meat that’s on my plate for dinner, I gulp for breath, great ragged gasps that hurt my sternum and then I sob outside the dining room because I hadn’t realised, somehow, that I’d gotten quite this sick. I’m so afraid of what I’ve done and of who I have become.’

There is a rawness, a brutal honesty, to how Wright writes about her illness that is so important. It’s the kind of writing that gets under your skin, touches something familiar within you and forces you to experience, even for just a moment, what it is like to live with such an illness. The rawness isn’t always shown through pain. There’s also joy. Wright shows the complexity of her life in all its facets, both difficult and special.

Wright’s essays are a delight to read. Often painful, always beautiful, they represent the growing skill and relevance of Australian essayists today. Personal essays like these allow for engaging discussions of issues that affect contemporary society: from poverty to racism and the need for change on a government level. Wright is only one of many Australian essayists using the essay to spark conversation and give readers a new way of looking at these issues by engaging them through the personal, as well as the purely factual. To avid essay readers and newcomers alike, this is a book worth putting on your list this year.

Words and photography by Lisandra Linde