Words by Jess Cochran

I recall tears streaming down my face as I watched a diverse group of people bound and roll their way down the runway at Melbourne Fashion Week 2021. I smiled through the tears as I spotted a friend of mine beaming widely as they looked up at another model who walked beside their wheelchair. I observed as they shared a silent moment of recognition and celebration for how significant the moment is. Not just for them, but for all the diverse, intersectional and marginalised communities they represented.

A person wearing a blazer jacket moved front and centre, before proudly turning to reveal “they/them” scrawled across the back in white graffiti-style text. That’s when I really bawled my eyes out. It’s a moment I don’t think I’ll ever forget both for its own significance but also as I had only just started informing my loved ones that my preferred pronouns are ‘they/them’. 

Seeing disabled, queer, plus-sized models amidst others from diverse and marginalised communities walking the runways of MFW was a moment I had dreamt of many times. It’s hard to admit but it was a dream I was unsure I’d see anytime soon.

I silently promised myself that I will keep that dream of rolling down the runway alight, and in the meantime continue my work as a queer disability advocate, actress, model and occasional writer.

A bit about me

I have a mix of disabilities and chronic health conditions that have helped me appreciate how we all adapt what we wear to suit our needs. Many people don’t necessarily have to consider whether they’ll dislocate a hip trying to get those jeans on, or if the sleeves of that jumper will be so long that they’ll constantly rub on the wheels of your manual wheelchair. They won’t necessarily need to figure out if that dress is going to cause them unbearable itching or pain from sensory overload. I, however, do have to consider all of the above and more.

I feel an actual boost when I put on something that I love that accommodates my body - an item of clothing that isn’t something you wear to blend in, but to be “out there” and celebrate our unique and beautiful bodies. 

It took me 25 years before I began to accept and love my body. I remember the exact day I realised just how strong I was and what my body had carried me through. A friend had recommended I go and do a creative modelling workshop. What was meant to be a once off became something that has given me strength and confidence and shown me that my body is strong and beautiful. 

Getting dressed, feeling comfortable and wearing things that help me more than they hinder me has been an arduous search. Part of the reason is because of two of my primary disabilities; Ehlers-Danlos Syndrome (EDS) and Autism. Each creates their own obstacles that I must navigate and include adaptations to search for.

My EDS effects the stability of my joints and has also caused my gastroparesis, which has led me to rely on tube feeds. Most of my joints are unstable, some more than others. This can affect my strength, dexterity, balance and dictate what sort of movements I can do safely. If I’m not careful I could dislocate or subluxate a joint without much force. I don’t have a sense of what is a safe range or what is me bending my arm at an abnormal angle.

I could be injuring or irritating a joint without realising it if I push their limits too much by bending or twisting in ways that aren’t safe or within the normal range of motion. 

As for my Autism, I have only just received my diagnosis so I am still learning about how it affects me. I do now understand why clothes seem to always feel itchy or annoying. I am also learning what I prefer in terms of fit and material and that will provide me with things to look for in items and help me find clothes that are comfy, functional and safer for me to use. 

My fashion journey

There are two main time periods that I conceptualise when thinking about how I’ve adapted what I wear to suit my needs – the period before becoming disabled and the period since my disabilities became more visible. I had to adjust my clothing to suit:

  • A walking frame
  • Manual and electric wheelchair
  • Assistance dog
  • Various braces including knees, hips, AFOs and wrists
  • 24/7 enteral feeds via a PEG-J 
  • Portacath which is sometimes accessed and hooked up to an IV 
  • Changes in the overall stability of my joints and my ability to safely weight bear or balance

There’s definitely been a change when I compare what I used to wear before I was a wheelchair and gutter frame user. The clothes I’ve worn - the style, fit and colour - have changed drastically throughout my life so far. I’ve worn every colour of the rainbow, even going through a gothic phase, which my physiotherapist finds highly amusing. I’ve hidden my body when I’ve struggled with low self-esteem and the natural changes of adolescence. I’ve also worn things that have accentuated my curves including an undercuts corset which still hangs in my closet as a cherished reminder of my early 20’s.

Looking back at my spare closet I can see frozen moments in time. Reminders of events, achievements, the dream career I had to leave behind due to my rapidly deteriorating joints. My kilt reminds me of my family in Scotland and my simple but still elegant Debutante dress reminds me of my grandmother who spent so much time making clothes with me…ok more like for me. It reminds me of my return to school after spending most of Year 10 in Royal Children’s Hospital and how my body had changed in that time. The main thing I feel is pride, I’m proud of that younger version of myself for the challenging time I had faced head on as I unknowingly battled for my life. These items remind me of a time that feels so drastically different to now. It’s hard to believe they’re part of my journey here.

To me clothing isn’t just comfort, it is a way that we can each further express who we are as a person. Clothes can be extremely powerful. 

They can transport me back to a moment in time, give me a much needed confidence boost heading into a meeting, or transform me into a character before I take to a stage or set. Clothing can also serve more than one purpose. Whether it be the cargo pants that have carried impressive amounts of random items or the dark and baggy clothes we wear when we are self-conscious, timid and in need of a protective shell. They can help us to be comfier and that may then allow us to save some energy or be in less pain.

My take on where adaptive fashion is now

At the moment I don’t have too much adaptive fashion as I had found it really hard to find clothes in my size and in a style I would wear. Even though I sit just above the national average clothing size for women/AFAB, it had been near impossible to find anything. I had last looked a year or so ago and had assumed that not much had changed in that time, but it’s been encouraging to see more brands, styles, and options available with more now offering my size. 

One aspect that I still find particularly confusing is that many brands will use measurements of areas such as bust, waist and hips to determine your size. While I can appreciate that especially in adaptive fashion people come in all shapes and sizes, there is often no alternative to measurements offered. I find it can be confusing and inaccessible in a few different ways. 

It can be really hard to measure yourself or know where to measure. Some people may not have the dexterity to juggle a measuring tape and make sure it’s sitting in the right spot or there may be other people who do not know how to read and interpret those various markings on the tape or have difficulty seeing those markings to begin with. I live alone so I do not have someone to assist with measurements and with executive dysfunction from ADHD there have been many times where my brain has decided to call it quits when it sees how we are meant to determine our size. Additionally, I know that for me, those measurements and numbers can be triggering as they are individualised and are a more specific way to keep track than generic clothing sizes. 

My hope is that we continue to build on making more clothes accessible, expressive and adaptive as a standard – leaving no one behind. 

At some point in our lives most of us will struggle to look after ourselves or dress ourselves. This could be due to anything from age, disability, injury, surgery or giving birth. I think many people avoid acknowledging that because they fear the potential need to rely on someone else to assist with daily activities or need clothing that has been made adaptive and inclusive. 

I have seen how far we’ve come even in the last few years. I am grateful that we are becoming more understanding of how each person is unique and worthy of seeing themselves within someone on the runway. As we move into the future, I think it is crucial to acknowledge that representation in fashion is not just hiring a model with a disability but ensuring that the clothing is adaptable and purchase processes are accessible. 

January 24, 2022 — Clare Puki