‘The NDIS Gave My Son His Mother Back’ When Support Becomes Survival: The Price of Disabled Parenthood
Written by
NDIS Participant & Journalist
What follows is not simply a personal story.
It is the anatomy of a country’s political choice, told through one disabled mother’s body.
There are mothers who carry toddlers on their hips through supermarket aisles. Mothers who chase children through parks, lift them into car seats, carry them home asleep from the beach, and run to soothe them in the middle of the night.
Mothers whose bodies quietly absorb thousands of small acts of love every day: tying shoelaces, wiping faces, packing lunchboxes, pushing swings, hauling groceries, bending, lifting, carrying, comforting.
Exhausted by the relentless choreography of parenthood, they rarely stop to consider the extraordinary physical demands woven into each of their beautifully ordinary days.
I notice them because I cannot do those things.
For the purposes of privacy, you can call me B.
I am 32 years old. A mother. A former ballerina. An investigative journalist.
Today, I spend most of my life trying to survive a body that is literally falling apart.
I live with severe Hypermobile Ehlers-Danlos Syndrome (hEDS), a rare genetic connective tissue disorder that affects every system of the body. It causes recurrent joint dislocations, spinal degeneration, disabling pain, profound fatigue, autonomic dysfunction, and a long list of complications that most people have never heard of, let alone pronounce.
My shoulders dislocate in my sleep. My ribs can slip out from something as trivial as a sneeze, and my hips sometimes collapse beneath me without warning. I have suffered a stroke, undergone multiple surgeries, and spent years cycling through hospitals, specialists, rehabilitation programs and pain clinics.
There is no cure for hEDS, no established treatment pathway, and no guarantee that the next intervention will do anything more than preserve a little function for a little longer.
I live in fear of passing it onto my children.
There is only the relentless work of trying to preserve enough function to remain present in my own life.
Yet the hardest part of living with disability is not the pain.
The hardest part is trying to be a mother while slowly disappearing.
The fear of losing my capacity to be a mother all together.
Before disability, my life felt limitless, and I was an invincible go-getter.
I worked as a journalist across major Australian media organisations and founded my own Australian music publication while still in my early twenties.
I travelled the world on tour with festivals and artistic, surfing and skiing and getting into every available mischief. I camped around Australia. I danced. I wrote. I made art and love, built friendships, broke hearts, and dreamed for a future that seemed expansive, joyful, and entirely within my reach.
Like most young people, I assumed my body would always belong to me.
Then my son was born.
What should have been the happiest chapter of my life became the beginning of its collapse.
Following pregnancy, my previously undiagnosed hEDS rapidly progressed. Almost overnight, I found myself watching life happen to everyone around me while my body deteriorated without explanation.
I became a mother at the exact moment I lost the ability to physically function.
I missed my son’s first Christmas.
I missed his first steps.
I spent those milestones recovering from spinal collapse and pelvic fractures sustained during pregnancy.
As my condition worsened and the dislocations started, emergency departments increasingly treated me with suspicion over compassion. Clear physical injuries were dismissed. Severe pain was questioned. Reasonable scans were denied. I was labelled a drug seeker. My symptoms were attributed to anxiety. I was treated as though the problem was my perception of reality rather than the very real injuries visible on scans and examinations.
On one occasion, I was even accused of somehow causing my own hip dislocation.
The reality of living with a condition no ED doctor had apparently heard of often left me fighting not only my own body, but the systems that were supposed to help me.
My son is now three years old, and I travel with a binder as big as Britannica.
I have not properly lifted my only child in my arms since he was a newborn.
People hear that sentence and pause.
But I don’t think they truly understand what it means.
Toddlers are profoundly physical creatures. They run toward you at full speed. They leap into your lap. They grab your hands and pull you outside. They climb over your body because to them their mother is safety, comfort, adventure, and home.
For me, something as simple as a hug can trigger multiple dislocations.
A sudden movement from my child — a jump, a pull, an accidental collision — can mean hours, days, or weeks of injury.
For years I have lived in fear of ordinary, desperately-wanted affection.
While my friends navigated the joyful chaos of early motherhood, I spent my son’s infancy in ambulances, emergency departments, operating theatres, rehabilitation wards, and hospital waiting rooms.
Instead of learning how to balance parenting with sleep deprivation and work, I was learning how to crawl into the next room to survive catastrophic pain and injury while trying not to terrify my child.
I was learning to relocate my own joints like a manic orthopedic surgeon instead of learning the curves of my baby’s body by heart.
And for a long time, I survived almost entirely alone.
My husband became the sole income earner while we drowned beneath medical expenses. His work often required international travel, leaving me alone and unsupported to care for myself and a child for weeks at a time.
People rarely talk about what prolonged isolation does to a human being.
There were days when I could not shower or prepare food, and days when I barely drank water because standing long enough to care for myself caused further injury. Sometimes breastfeeding my son was the only thing I managed all day, and the boundaries of my world gradually shrank to the walls of our home.
By the time I turned 30, I had stopped recognising myself. I stopped loving myself. Our decade-long relationship strained beneath pressures no young family should be expected to endure alone.
Instead of the blissful newborn experience people promise new mothers, I became bedridden, isolated, suicidal, and consumed by grief as I watched my child grow up from the sidelines of my own life.
People often imagine disability as inconvenience.
They imagine ramps, parking permits, wheelchairs, and mobility aids.
What they do not imagine is grief. The grief of waving goodbye while your family leaves for outings your body cannot tolerate. The grief of missing birthdays, holidays, beach trips and ordinary moments because participation has become physically impossible. The grief of feeling your role within your own family slowly erode beneath illness. Most devastating of all is the fear that your child will remember your absence more vividly than your love.
Then the NDIS entered my life in July 2025, and everything changed.
The public conversation around the NDIS often focuses on cost, as though disabled people exist primarily as economic liabilities to be managed. Rarely does it focus on outcomes.
The NDIS did not give me luxury. It did not give me indulgence. It did not give me special treatment.
It gave my son his mother back.
Support workers now assist with the countless tasks my body can no longer safely sustain alone: cooking, cleaning, laundry, meal preparation, showering, transport, mobility support, edication management, and helping me manage injuries before they escalate into medical emergencies.
Those supports have dramatically reduced my injuries.
But more importantly, they have restored something I thought I had lost forever: the ability to safely participate in motherhood.
Today I can take my son to the park. We can spend family days at the beach. I am able to attend appointments in person, explore the world beyond my local shops.
I can be present for the ordinary moments that make up a childhood.
Not because my disability has improved; it has not.
But because support has transformed the conditions I am forced to live under.
For the first time in years, I feel something beyond survival.
There is room again for dignity, stability and hope. Most surprisingly of all, there is room for joy.
There is still no cure waiting for me. My condition will continue to progress. I will likely lose further mobility, and I may eventually become permanently reliant on a wheelchair.
I will continue spending months of my life navigating surgeries, hospital admissions, rehabilitation, and treatments aimed not at recovery, but preservation.
Yet even on my worst days, I am now a mother instead of merely a patient.
That distinction matters more than I can adequately explain.
Because when funding is removed, hundreds of thousands of disabled Australians will not simply get on with their lives quietly.
Without support, we will not just become less comfortable.
We disappear.
We become trapped inside homes, hospitals, and systems never designed for long-term human flourishing.
Relationships collapse beneath impossible caregiving burdens.
Mental health deteriorates.
Parents miss their children’s childhoods.
Children grow up carrying responsibilities they should never have been asked to bear.
And disabled parents live with a terror most people never consider:
The fear that without adequate support, they may lose not only their health, but their place within their own families.
This is why debates about disability funding cannot be reduced to spreadsheets.
The question is not merely how much support costs.
The question is what happens when it is removed.
Disability-related needs do not disappear when funding disappears.
They are simply transferred elsewhere.
To emergency departments, hospital wards, mental health facilities, aged care housing.
To exhausted families already stretched beyond breaking point.
Taxpayers do not save money when disabled people lose support.
They simply pay for the consequences later — often many times over.
Preventative support is almost always cheaper than crisis intervention. Maintaining independence is cheaper than institutionalisation. Supporting families is cheaper than repairing their collapse.
The belief that reducing disability support creates long-term savings is not fiscal responsibility.
It is short-sightedness.
A sustainable NDIS is essential.
But true sustainability is not achieved by withdrawing the very supports that prevent greater costs elsewhere.
True sustainability means investing in the supports that keep people healthy, safe, independent, connected, and participating in society.
Disabled Australians are not liabilities on a balance sheet. We are citizens, parents, partners, workers, friends and neighbours. We contribute to our communities, raise families, build relationships and imagine futures just like everyone else.
We should not have to repeatedly justify our right to participate in society.
We should not have to prove that our lives are worth supporting.
We should not have to defend our right to parent, to contribute, to belong, to love, or to remain independent within our communities.
The debate surrounding the future of disability support is not ultimately about money.
It is about dignity.
It is about freedom.
It is about whether disabled Australians are permitted to remain visible within the lives they have built and the families they love.
For me, the stakes are painfully simple.
The difference between adequate support and no support is the difference between surviving and thriving.
It is the difference between my son growing up with a mother who is present, joyful, independent, and deeply involved in his life—
or a mother forced back to the sidelines, watching his childhood unfold from a distance.
No mother should lose her place in her child’s world because her country decided she was not worth the cost.