The care paradox: why it’s a marathon, not a sprint
Caregiving for children, teens or young adults with disability can feel increasingly at odds with the fast-paced, efficiency-driven world around us. Monique Power, unpacks the care paradox
Parenting a child with a disability or complex needs is often described as a marathon, not a sprint. It’s a journey that requires endurance, resilience, and a constant adjustment to new challenges. In today’s world, where technological advancements promise to make life easier and more efficient, parents like you may find yourselves caught in a paradox — the more efficient our society becomes, the more isolated and overwhelming the act of caring feels. This is the essence of the “care paradox.”.
THE MARATHON OF CARE:
A long-term commitment
Caring for a child with disabilities or complex needs is akin to running a marathon. It’s not just about the finish line; it’s about the journey — the unseen preparation, each step, each mile, requires unwavering dedication and focus. Unlike a sprint, where the goal is immediate and the effort short-lived, the marathon of care stretches over a lifetime, demanding sustained energy and emotional resources. In this context, the rapid pace of technological progress can feel dissonant. While the world races ahead with innovations in artificial intelligence, automation, and efficiency, the world of care seems to lag behind, tethered to the unchanging realities of human need and connection. This contrast brings into sharp relief the care paradox — where the more our society advances, the more the fundamental act of caring for another human being becomes marginalised and undervalued.
THE CARE PARADOX:
Efficiency vs humanity
At the heart of this paradox is what economists call The Baumol effect. Named after economist William Baumol, this concept explains how sectors with slow productivity growth — like healthcare, education, and care — become increasingly expensive relative to high-efficiency sectors like manufacturing. While it becomes cheaper and easier to produce goods or services, the relative cost and effort of providing personal, human-centric care increase. Think of it this way, bathing a child 30 years ago took just as long as bathing a child today. Even settling and soothing a child after sensory overstimulation – takes time. Quality care is careful, time consuming, and there are no short cuts. For parents of children with disability, this paradox is experienced daily. The societal push for efficiency means that resources and support systems for care are often strained, undervalued, and underfunded. Care becomes a costly endeavour, not just financially, but emotionally and physically.
THE EROSION OF CONNECTION: The human cost of technological progress
As our society becomes more connected through technology (and ‘apps’ open our worlds to new possibilities), paradoxically, we can feel more isolated in our care roles. It is often a very thankless ‘ job’.
The demands of caregiving can create a sense of isolation, as the support needed is not just logistical but deeply personal and emotional, or extortionately expensive and unattainable. Technology may offer tools to help manage care more efficiently (and in some cases really well!), but it cannot replace the essential human connection that true caregiving requires. For parents in the midst of this care marathon, the erosion of connection is profoundly felt. Whilst, technology can provide temporary relief, for instance, a telehealth consultation or an app to track medication schedule… it cannot sit with you during the sleepless nights, or offer a comforting touch when the road feels particularly long, winding and lonely. The push for efficiency in all other aspects of life can make the inherently slow, deliberate, and compassionate nature of care feel out of step with the times.
THE GENDERED BURDEN OF CARE: A labour of love
The Care Paradox also has a gendered dimension. Historically, caregiving has fallen disproportionately on women, a trend that continues today. In many families, mothers are the primary caregivers, juggling multiple roles and responsibilities while managing the complex needs of their children. This creates a double bind where the increasing cost and difficulty of care, coupled with societal expectations that place the burden of this care on the fairer sex, exacerbate gender inequalities. For parents, especially mothers, running this marathon means constantly navigating a landscape that undervalues their labour, both paid and unpaid. The societal expectation that women should naturally take on caregiving roles can lead to burnout and a sense of being overwhelmed – or that all too familiar feeling of “mum guilt”. The marathon becomes not just about the endurance required to care for your child, but about the stamina needed to advocate for support, recognition, and fair treatment in a society that too often takes caregiving for granted, with no end in sight. It is a labour of love.
REIMAGINING THE SUPPORT SYSTEM: Technology as a partner, not a replacement
Despite these challenges, there is hope. The very technology that can seems so alienating also holds the potential to create more robust support systems for families. By reimagining how care is delivered, integrating technological tools with human compassion, we can create a new model of care that respects both the needs of those receiving care and the realities of those providing it. For example, online support groups, virtual therapy sessions, and digital tools that help track and manage care needs can offer much-needed relief.
These tools, when used as supplements rather than replacements, can provide parents with a sense of connection and support that bridges the gap created by the Care Paradox. They can help transform the care marathon into a more sustainable journey, offering water stations and rest stops along the way. And with enough foot traffic, the ‘stampede’ of carers can carve a new pathway for those following in their footsteps.
THE CULTURAL SHIFT: VALUING CARE IN A HIGH-TECH WORLD
Ultimately, addressing the Care Paradox requires a cultural shift in how we value care. As a society, we need to move away from seeing care as a burden or a drain on resources and begin to recognise it as the vital, life-sustaining work that it is. This means not only providing better support systems for caregivers but also changing the way we think about care in the context of our lives.
Also, just as importantly, how we communicate this to others. Running the care marathon requires not just endurance, but also a community that understands and values the race you are running. It requires policies that support families, workplaces that accommodate the realities of caregiving, and a culture that celebrates the act of caring as a fundamental part of what it means to be human.
Pace yourself, embrace the marathon
In the end, navigating the Care Paradox as a parent of a child with disabilities or complex needs is about embracing the marathon. It’s about recognising that while the road may be long and challenging, it is also filled with moments of profound connection, love, and meaning (all things a tech tool can’t fulfill!). It’s about understanding that while technology and efficiency may reshape many aspects of our world, the act of caring for another human being remains a deeply personal, irreplaceable part of our humanity. It is part of the very fabric that makes us who we are.
As you continue on this care marathon, know that you are not alone. There is a growing recognition of the value of care, and a collective movement towards creating a society that supports and honours the caregivers among us. The marathon may be long, but with each step, you are paving the way for a future where care is not seen as a paradox, but as a shared, cherished responsibility.
By, Monique Power, founder Rippleability. RippleAbility is a paediatric specific disability provider, helping families navigate complex systems of support and build their capacity to advocate for appropriate supports and services for their child. Email: [email protected] | rippleability.org
