The deep well of care

I have lived with the kindness of care workers for nearly sixteen years.

In disability advocacy and policy circles, there is an important distinction made between a “carer” and a “worker.” The title of “carer” is usually reserved for unpaid family members and loved ones. At the same time, using the label “carer” or “care worker” is considered somewhat passé in disability circles. It carries a paternalistic undertone, a hint that the disabled person is a passive recipient rather than the active director of their own life. Because of that, “support worker” has rightly become the preferred term to reinforce autonomy and professionalism.

In my academic and public writing, I stick to that professional script. But in the quiet routine of my own home, I still default to “carers.”

I do it because the word care matters. It speaks to the deep well of human connection that shapes my daily routine.

I’ve been incredibly lucky. Over the years, a diverse cast of characters has looked after me, though mothers and university students have predominated. There have been a few good men along the way, but it is mostly women who show up at my door, a testament to the distinct empathy and commitment that women so often bring to this line of work.

The skills required for disability support vary dramatically from client to client and job to job. What is universal is a profound willingness to engage with the deeply personal, intimate realities of another person’s life.

My carers deal with the awkward weirdness and the messy realities of my body, and they do so bringing peace and joy into my home. They are kindness personified; patient, generous, and attentive. They show up at 6:30 AM, and they return last thing at night. They understand that without them, I am utterly trapped. They don’t take that responsibility lightly.

Recent political and media scrutiny of the NDIS has triggered substantive funding cuts, spreading fear and anger throughout the disability community. To justify these cuts, critics have weaponised a lazy narrative: reports of support workers wasting time, scrolling on their phones.

But that lazy narrative does not match what I see every day.

Do they occasionally check their phones? Of course. We live in a distracted world. But first-hand experience tells me that in countless homes across Australia, care workers give far more of themselves than a paycheck can buy. They perform the vital, intimate tasks that most people would consider beneath their dignity, not to get rich but as an expression of a kind soul.

To my care workers past and present, and to all those doing this vital work across our nation: thank you. You make our lives possible, one morning and one quiet act of kindness at a time.