Working as a Sibling
By Luke Thorne
I have been working as a disability support worker since the summer of 2012. I had just graduated high school and was looking for a new part time job. I had already been volunteering so working just felt like a natural step for me. The thing is, I have an autistic sister with high level support needs. I’m sure some of you are wondering why I would work this job and then come home to such a similar situation? Well, the thing is I think all my life experience has given me a unique perspective for my job.
Being a sibling has had these influences my job as a support worker:
· Empathy – Living with an Autistic sister means that I have a lived experience that other support workers do not have. It can be devastating not being able to attend an event you have been looking forward to because support is cancelled. The weeks and sometimes months of planning that has had to go into making sure everything is taken care of, so your family can have respite, can fall apart with a single call. As a sibling it hurt when my parents would have to choose who got to come to my school concert or musical when we couldn’t get support for my sister. This empathy of the work and planning it takes some families to be able to do things has grown me into a highly dependable person. I rarely cancel shifts on short notice because I know how families feel when they have support cancelled on them last minute.
· Deeper knowledge of a person’s disability – Every person’s disability is different but having an intimate knowledge of my sister’s life has meant that I understand the challenges that Autistic people face living in our society. This has let me support people in more effective ways like understanding how important routine is, or that big crowds can be overstimulating or that flapping hands is not a negative behaviour but just a way that some autistic people express themselves or stim.
· Patience – I have all the patience in the world thanks to my sister. Neurodivergent people think differently to neurotypical people, so quite often it takes them longer to do something they’ve been asked or maybe they don’t act in the way you expected them to, or maybe activities didn’t go according to plan and they’re having a meltdown. Understanding this has meant that my expectations are different for how long tasks can take for my clients.
· I can be too giving of myself and my time – Over the years I have struggled to find the correct work life balance. I have given my all to families, choosing to miss out on events in my own life so they could have respite. I have missed birthdays, engagements, and gigs etc because I had shifts, I couldn’t bring myself to cancel or find someone to swap with. This really stems from knowing what it means if I cancel, and the shift can’t get filled. I feel guilty about it. This is an ongoing balance for me.
In the end I think the thing that truly drew me to becoming a disability support worker was the chance it gave me to give back to my community. People had supported my family growing up and I wanted the chance to support other families who needed help. The last 10 years of work has been some of the most rewarding of my life and I wouldn’t change a thing.
Luke is a Music Therapy student based in Naarm (Melbourne), Australia. Luke has been working as a disability support worker for 10 years and believes in providing support in a strengths-based framework that focuses on the client's strengths and resources.