Words by Maya Hart | Photographs by Mia Maraschino

Meet our incredible student and recent addition to our Siren of the House team, Maya Hart. This week, Maya talks about their Aerial Journey and how living with a Disability impacts their body image and self esteem. They share with us the ongoing relationship with their sensuality, and how it’s important to feel sexy with your disability (and not despite it).

I have Ehlers Danlos Syndrome – a degenerative connective tissue disease that dislocates my joints often. While I have always experienced symptoms and pain from EDS, it significantly worsened when I was 15 years old. As a result of EDS, I also have severe hearing loss. Today, I use a walking frame to mobilise and am now preparing for my first powered wheelchair. EDS often comes with a lot of comorbidities – secondary diseases – so I have Postural Orthostatic Tachycardia Syndrome, Polycystic Ovarian Syndrome, Colonic Inertia and Mast Cell Activation Syndrome. This means that my entire body is affected by my disabilities every single day.

As my EDS deteriorated over the years, I felt myself losing more and more agency over my own body.

When I became visibly disabled, there was a profound shift in the way the world looked at me, and ultimately in the way that I looked at myself. Disabled people are often infantilised – meaning that we are assumed to have the maturity and mental capacity of a child and treated as such. Whenever I wore sexy outfits, was open about my sexuality or tried to feel sexy, I was told that it was inappropriate – even to the point of being told by a few people that my partner is taking advantage of me. I believed that my body was too different to be sexy.

I discovered Sky Sirens through an Instagram post, and I remember being taken aback by how fun lyra looked and how glamorous the classroom was. I really wanted to try it out, but my fear of being too different made me hesitate for a while. I was concerned that everyone would be elite performers compared to me, someone who needs another person to wash their hair sometimes.

I was worried that I wouldn’t even be let in the door, let alone participate, which has happened to me far too often in exercise and dance studios.

When I finally felt confident enough to attend Bring a Babe by myself, I was surrounded by a diverse community of bodies, experiences and abilities. I also found an inclusive environment that welcomes all bodies. I found body positivity that included disabled people too.

When I started sling classes, I introduced myself at the start of each term letting everyone know that I am disabled. I felt I needed to explain why I am so different and why it takes me a lot longer to learn the syllabus. I wore baggy, knee-length basketball shorts for my entire first term. I was too scared to wear lingerie or even revealing athleisure wear.  

I've faced a lot of small, internal battles over trying to make my body fit conventional standards for beauty in dance. One of my conditions, polycystic ovarian syndrome, causes me to grow more hair in more places compared to other people with uteruses. It is very hard to maintain, especially as someone with chronic fatigue. I have been ashamed since puberty began. I tried to hide it as best I can, but I have temperature regulation issues and dancing in a long sleeve shirt is dangerous for me. Over time, I felt more confident with my body hair. I realised that I would never apologise for the hair on my head, or if my eyebrows were messy. How is this any different? Realising that I could wear sexy lingerie and have my body hair showing and still be sexy was revolutionary in a way I can only describe as breaking free of societal expectations of what I am supposed to look like.

I look different to that standard in so many ways that it sometimes feels like my body is an ongoing living protest against the rules imposed on us - which is incredibly badass.

When I point my toes, I will likely dislocate at least both of my big toes. Trying to find a balance between floppy feet and dislocated digits doesn't leave a lot of options for me to feel good about myself. I am very worried about performing in front of others in case I turn the routine into a body horror show and then just... casually relocate my joint and continue the routine.  Again, I had to adjust the expectations of my body, although I can now point them slightly without dislocating, which I can count as a win! 

I have severe sensorineural hearing loss and can’t hear the music in class. I don’t know when the music starts, and I fall out of time with routines without the auditory cues. I try counting beats but even that is tough with a permanently fuzzy brain.  I used to feel ashamed about this. I felt I couldn’t even attend speakeasy because I would “ruin” the video recording of the performance for everyone else. 

Othering myself took a toll on my mind. I was so concerned with how others thought of me that I couldn’t have fun. I was left with two possibilities:

- I could continue to use humour to cover up how much I was struggling both physically and mentally in an "I'm laughing TOO" kind of way, even if no one was actually laughing at me, to begin with. 

- I could try to engage with sensuality in dance.

I chose the latter.

I was surprised to find that I felt much more confident when I took my basketball shorts off and wore a velvet bodysuit to class. I was so scared at first that I was shaking yet no-one laughed at me. I felt my body was accepted in this space, for the first time. I smiled a lot. 

Over time, I have made a lot of progress. I experienced my first time taking my bra off in the changing room – and I was accepted. Next, I wore a two-piece Luna set to class which made my excess body hair visible for the first time – and I was accepted. This term, I am learning strip-tease in babydoll burlesque – and I am accepted, and I feel good about my body when I do it!

I still make jokes when I fall over in class, but this time, it isn’t meticulously crafted as an attempt to ‘redeem’ myself due to my perceived complete lack of value aside from humour. I make jokes because I think it is funny. I will dance off balance, and probably fall over. I will perform routines out of sync with the other students because I can't hear the music. I will not be ashamed of my surgical scars or my mobility aids. I will show my body hair proudly because my body is good enough. 

To other disabled or chronically ill students who are still finding their way along this journey: it is hard. Unlearning ableism, something so deeply integrated within our culture, is a long process, especially when sexism is intertwined. It is a rollercoaster through fear, shame, a moment of bravery, and then a few more, more shame, and finally acceptance. I will add that when you once had an abled, healthy body and losing it over time, is hard. You can grieve what your body once was, and you can celebrate your new body too. My advice to all disabled people is to engage in body positive spaces that include disabled people, take it at your own pace.

Remember that no matter what, you are not sexy despite your disability, you are sexy with your disability. 

Did you know that Maya prefers to use Auslan to communicate? Next time you see Maya on reception, try fingerspelling your name for them! If you don’t know Auslan, it’s important to say your name and class clearly and to look them in the eye when you’re speaking. Maya will also not realise that you’re talking to them, if you speak when their back is turned (or if you aren’t facing them!). Why not have a read at Katia’s blog regarding her Deafness, which has some tips down the bottom about how to engage with Deaf and Hard of Hearing folk. If you are interested in learning Auslan, we recommend the Deaf Society’s “Sign Online” to kick-start your studies.