NELLEN champions speak – The challenge of adult life

NELLEN catches up with one of our young bloggers to hear about how he is managing work-life balance while juggling uni, employment, and volunteering for a social-justice themed fashion label

Lately, in my various roles, I have been living with the topic of disability every day—writing about it for a university assignment, working as a community access worker and learning support worker, and living with my own disability. As a result, I have recently been experiencing ‘compassion fatigue’. This fatigue has affected me physically, contributing to restless sleep and hair loss. I, however, have remained aware of this lack of empathy and have ensured that it has not affected my service provision. While hesitant to take on anything that might worsen my burnout, in early November I received an email regarding an opportunity to get involved in a local community event and write a blog about it on behalf of the North East Local Learning and Employment Network (NELLEN). Given my compassion fatigue, I saw this as an opportunity to reflect on where I am going personally, and how I can improve my work-life balance.

So, the following Sunday I headed to the Jazz Basement, Wodonga, for a photo shoot in support of a social-justice themed fashion label, Blind Grit. Besides creating a pencil case and pillow case in Year 9 and the brief work I had with textiles through working in learning support, I had little idea how I could assist or what I would need to do. In my mind I envisioned The Devil Wears Prada, so I had been quite anxious when phoning the designer, Nikki Hind. However, on speaking with her, I found her vision ‘To celebrate the qualities required to live with disability and survive trauma’ and her passion intoxicating. After sharing our stories of personal adversity regarding disability, I soon found myself volunteering to help Nikki out with social media in support of her crowd funding campaign. Although I had already committed myself to an extensive work schedule, her vision was too inspiring to turn down.

As a young person living with Lance-Adams syndrome, a form of cerebral palsy, I am often challenged to find accessible clothing that suits my needs. In fact, it is often the summer time that I find the most distressing as I attempt to save money on electricity by cutting down my air-conditioning; however, the clothing designed for men my size and proportion is for those with fully functioning fine motor skills. I end up encountering many issues attempting to model myself as professional whilst seeking to be comfortable within my own clothing and skin. The lack of diversity in clothing options is not, however, purely a regional issue; it is a market issue as the industry is not incentivised to adapt their designs to be more accessibility friendly.

Despite juggling a major essay for university that resulted in a few late nights, I agreed to support Nikki in organising and designing a Facebook group for her models as well as an event page for the crowd funding campaign. I also agreed to be a model for Nikki at the photo shoot. While I didn’t know what we would be modelling, once I start something, I like to see it through to the end!

Once at the Jazz Basement, I was comforted to find I wasn’t the only one from a diverse group of models getting nervous. I retreated to the solace of the piano on the stage whilst waiting for the makeup artists to call me over and turn me from Trailer Park’s Bubbles into an Adonis. I was joined by Nikki’s son and whilst watching him play I saw a man in the audience playing a guitar.

Intrigued, I walked over and introduced myself. I soon learnt that Josh, who was only one year older than I, had studied in the Bachelor of Human Services and Master of Social Work, as I am doing. Sometimes I can feel alone in this female-dominated course. However, I found Josh easy to speak with and I could completely relate to him. Being legally blind, he had encountered similar challenges with having his support needs met.

Just a fortnight prior I’d had a nightmare experience during an exam. Instead of being permitted to sit the exam with the rest of the students, I’d had to wait for all students to finish their three-hour exam so I could then be supervised on computer so that I wouldn’t need to hand-write. When the computer crashed part-way into the exam, I was given an extra hour to hand-write the exam. I pushed through despite being too physically exhausted to hand-write. By the end, at 6 pm, I was so tired I could not drive home and had to catch a taxi, arriving home at about 7.30 pm.

While it was nice to find someone with whom I could empathise and vent, I was left deeply confronted by the fact that such an intelligent and able-bodied individual had such difficulty finding employment within our regional city. I know that there are job agencies locally that work with people such as myself and Josh; however, the fact that he was struggling to find work whilst being a skilled musician, physically active and intelligent, I found quite demoralising.

This is why I found working with Nikki so encouraging—despite experiencing the barriers faced by those of us living with a disability, she is defying the barrier of stigma and challenging the notions of capacity by starting her own business. However, Nikki reminded me of me—she was trying to be there for everyone and supporting everyone with their job; however, this led to a visible fatigue.

While I hope that more people within our community such as Josh and Nikki stand up to challenge these barriers we face on a daily basis—and I plan to support them every step of the way in what ever capacity I can—we also need to be aware of what we can do to prevent burnout in ourselves and in other people who are living with disability.

Attending this event was a rare opportunity—it allowed me to recognise and take in who I am as a person and to stop being a label and just be myself.