April arrives with its annual ritual. Buildings glow blue. Corporates tweet about “neurodiversity”.
Someone in HR wears a puzzle piece pin. And I, a social worker and a mother to a daughter with cerebral palsy, feel the familiar twitch.
We have mastered the aesthetics of care. But we have botched the arithmetic.
About nine- to 10-million South Africans, around 15% of the population, or roughly one in six people, live with some form of disability.
This is not a marginal group. It is a significant portion of the country, yet it remains structurally sidelined in both policy and practice.
We do not have a dedicated ministry. Instead, disability sits within a bundled portfolio alongside women and youth.
This may look like integration, but in practice it disperses focus.
The scale and complexity of disability in SA cannot be meaningfully addressed as an adjunct concern.
The budget reflects this. While the state allocates vast resources to other priorities, programmes dedicated to disability operate on comparatively modest funding.
The issue is proportionality, because we continue to treat disability as rare.
In major public hospitals, clinicians encounter a wide range of conditions, autism, cerebral palsy, epilepsy on any given day.
These are not exceptional cases. They are everyday realities.
This is even more visible in places like the Eastern Cape.
In districts such as OR Tambo, disability intersects with poverty, limited infrastructure and delayed access to care.
Conditions are often underdiagnosed, undertreated, and carried within households with minimal support.
It is within this uneven system that my own story sits.
I am a single mother, but also a PhD scholar with family support.
These credentials matter. They open doors that remain closed for many.
My daughter’s diagnosis came almost accidentally, a cold, a visit to a teaching hospital, and a cascade of tests.
But what became clear was this: the system responds differently depending on who you are.
When I introduced myself with academic credentials, attitudes shifted.
I could not ignore how differently other mothers particularly from rural areas were treated.
We accessed advanced diagnostics. But no-one could interpret the results.
I found myself calling a colleague overseas at midnight to understand my child’s condition.
This is the contradiction of our healthcare system: access to technology, but limited capacity to translate it into care.
Support followed the same uneven pattern. Physiotherapy in Mthatha was difficult to access.
KuGompo City offered some improvement. But in Gqeberha, a school identified my daughter’s dislocated hips within a week, after years of missed opportunities and referred her for surgery.
The surgery corrected her hips. It did not resolve the realities of care.
What I encountered next was not a lack of empathy, but the limits of policy.
Leave frameworks assume care can be “managed” within a set number of days.
My supervisor at the time, a social worker, was required to enforce these rules, even when they did not reflect lived reality.
But caregiving is not predictable. It is constant, physical, and often invisible.
A child cannot bathe independently after surgery. Communication may be limited.
Calling for help is not always possible. And respite care is largely inaccessible, with waiting lists stretching for years.
I, a professional advocate for others, became a supplicant for my own child. The irony is not lost to me.
Most children remain in mainstream classrooms where teachers are overburdened and under-supported
There is another layer of privilege. My daughter accessed a well-resourced learners with special educational needs (LSEN) school in Gqeberha. She is among the fortunate few.
Even with this access, the system reveals itself. Care in SA is distributed through exception, not design.
In the Eastern Cape, waiting lists for special needs schools can stretch two years or more, of children sitting at home and parents pleading for access.
Those who do gain entry experience something entirely different: smaller classes, integrated therapy, and teaching that adapts to the child. This is what we do not scale.
Most children remain in mainstream classrooms where teachers are overburdened and under-supported.
Here, “inclusive education” often becomes symbolic physical presence without meaningful participation.
Even within specialised education, quality is uneven. Oversight is inconsistent.
While many institutions do important work, others operate in loosely regulated spaces where parents must navigate uncertainty and uneven standards.
Then there is the cost.
Households caring for children with disabilities carry significant out-of-pocket expenses.
Therapy, medication, transport and assistive care accumulate quickly.
Conservative estimates place monthly costs between R5,000 and R15,000, often more.
At this level, care can consume a household’s entire income.
The state offers support through the care dependency grant, just more than R2,000 a month. Enough for perhaps one or two therapy sessions.
But the grant is means-tested, excluding many working families.
The system assumes caregivers have no income, then withdraws support when they do.
It is structurally inadequate, absorbed into basic survival while the developmental window closes.
Why do we need a dedicated disability ministry?
Because disability currently sits everywhere and nowhere.
Policies exist, but implementation depends on co-ordination across multiple sectors.
Without clear authority, co-ordination becomes negotiation and negotiation becomes delay.
A dedicated ministry would enable accurate planning, targeted budgeting and accountability.
It would expand access to specialised education, strengthen regulation and move beyond symbolic inclusion.
Most importantly, it would end the fiction that disability is rare.
So here is my challenge this Autism Month.
When you see buildings glow blue, ask what sits behind the colour.
Ask whether acceptance without resources performance, and visibility without infrastructure, is just marketing.
The nearly one in six South Africans living with disabilities are not asking for inspiration.
They are asking for schools that teach them, transport that carries them, and support that meets their needs.
Your daughter and mine deserve more than blue lights.
They deserve to be counted, taught, and supported by a state that does not trade dignity for care.
Busisiwe Madikizela-Theu, Nelson Mandela University social work lecturer
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