As a wheelchair user needing assistance with personal care, I’ve interacted with support workers at least twice a day for a decade. The kinds of help I need are varied: from logistical tasks like transfers between my wheelchair and the bed, to domestic chores like cleaning around the home.
Because the industry is casual, my workers, who are often students, have varying availability. If someone misses a shift, I won’t be able to get changed or go to bed. This risk means I like to organise my schedule at least a week in advance.
Some days, my life is better than younger me could have ever imagined. For instance: if I’m at a party and my friends suggest going to another pub afterwards, I can simply let my support worker know I’ll be home late, and stay out on a whim. “No worries! I’ll let myself in, do the washing and vacuuming. Have fun, Queen!” one of my support workers once texted me.
Having your chores done for you while you are out is the stuff of fantasy. But there are other days, and other interactions with support workers, that feel nothing like this.
Occasionally, I might return home to a half-cleaned apartment after paying for a shift. Or a small, but essential task might be overlooked that has a much bigger consequence for me. Like the time my phone charger was left wrapped around the bedhead, out of my reach.
The author. Source: Supplied
Do I say something?
Then I check the calendar: the same worker is scheduled to work five shifts in the next six days. No, I’ll leave it, I decide, and ring my taxi driver to come over and fetch my phone charger instead.
The reality is, demanding the standard of care I deserve can sometimes put me in a precarious position.
I remember the heat on my face and my shaking legs as I faced a dissatisfied worker. My plans had changed, and I needed to cancel her shift, which I had done within 15 hours’ notice, more than the required 12. “If I worked at McDonald’s, they wouldn’t do this,” she responded.
This thinly veiled confrontation was occurring in my home, my safe space. I asked her to leave because I was starting to feel uncomfortable. But rather than going, she enveloped me in a hug, chuckled and said: “If I left, how would you go to bed?” In that moment it became clear that, while on paper I was her employer, in reality I was at her mercy.
For the two hours of each shift, my life is in someone else's hands
On nights my vulnerability is front of mind, it hits me that for the two hours of each shift, my life is in someone else’s hands. It’s no wonder anxiety is a recurring character in my life.
On the rare occasions that I work up the courage to reiterate my expected standards of care, the responses are usually one of two extremes: “I’m sorry, I was tired this morning. I can come back in an hour and clean up? I’ll never forget again.” Or “Yeah, I had to hurry to another shift, you should have reminded me. I do more than the others.”
When a support worker is defensive, my stomach births butterflies and I retract into my shell. Even though I know I am telling my truth, I feel compelled to hold my tongue. I tread carefully because most support work is casual – and if someone decides not to attend their next shift, I’ll have to find a replacement or I won’t be going to bed.
… if someone decides not to attend their next shift, I’ll have to find a replacement or I won’t be going to bed
One night, my phone vibrates with an all-too familiar message: “Hey, sorry, I’ll be there at 9pm, because I have an early morning tomorrow, if that’s okay?” “No.” I think it, but don’t say it. Like most people, 9pm is too early for bed. Plus, I’m a night owl.
Ideally, I’d say no and choose my own bedtime. But with every choice comes a consequence: If I refuse, it’s likely the worker will say they can no longer attend, and I will have to ask other workers to fill in at the last minute, all while trying to complete my own work report. So I choose the inconvenient, but less stressful option. “Yep.” I add a smile emoji to soften my response.
And therein lies the skewed power dynamic: I can make my wishes known regarding the length, time and structure of shifts, but unless a worker is willing to align with those wishes, I will be the one to compromise.
Compromise?” she said. “Why would you? We are here to help you, not the other way around!
There’s another reason I hold my tongue: it is easy to forget this is a paid service. I’m filled with an overwhelming need to be grateful for any help they provide, no matter the inconvenience it causes me. This is the manifestation of internalised ableism.
Recently, I met a new support worker, to whom I confessed some of my worries. “Compromise? Why would you? We are here to help you, not the other way around!”
With one comment, she changed my perspective. She invited me to consider that not only can I demand better, but I owe it to myself to do so. Ever since, I have sought workers who affirm my desire to live the life I choose (late nights notwithstanding). People who see me as a person and not a job, to whom I can give feedback without fear. With every passing day, I am learning to further assert my right to tailored and flexible support that empowers me. It takes practice, but it’s worth it.
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