From Locked Gates to Community Belonging: Real Voices on Disability Care

Support in disability and aged care has come a long way—from institutions and asylums to person-led care and community inclusion. But even now, how we design support still depends on the model we’re using—whether consciously or not.

These models don’t just affect policies and funding. They shape how people are treated, how they feel about themselves, and what kind of future they can imagine. And while we often focus on modern best practice, it’s important to know where these models came from—and how echoes of the past still influence the present.

🧙‍♀️ Disability in Folklore and Fairy Tales

Before we had formal systems or scientific diagnoses, societies used stories to explain difference—and those stories often weren’t kind.

Changelings: In European folklore, a changeling was a child believed to have been swapped by fairies—often because the child behaved differently, didn’t speak, or didn’t make eye contact. Today, many see this as a cultural explanation for autism or intellectual disability.
The Shut-In or the Witch: People who lived alone or avoided society—perhaps because of trauma, mental illness, or neurodivergence—were sometimes demonised in stories as witches, hags, or cursed figures.
Marked Bodies: Characters with visible differences (a limp, a hunchback, scars) were often written as villains or tragic figures. These stereotypes still affect how people with disabilities are seen today in media and public spaces.

Fairy tales reflect fear, misunderstanding, and the desire to explain things we didn’t understand. Sadly, those same fears led to the creation of early institutions—and still show up in how some people talk about disability today.

🌿 The Models of Care: How We’ve Framed Disability and Support

🔬 Medical Model – "Fix the Person"

Origin: 1800s–1900s
Core idea: Disability is a defect in the body or mind that must be cured or managed.

This model sees professionals as the decision-makers. The goal is to restore the person to “normal” or remove them from society if that’s not possible. Even today, people with disabilities are often treated like medical cases instead of whole people. Research into cures (e.g., for autism or Down syndrome) still dominates funding, while actual support and access lag behind.

🧠 Biopsychosocial Model – "Whole Person, Whole Context"

Origin: 1970s
Core idea: Disability is shaped by biology, psychology, and the environment.

This model brought progress. It recognises that support isn’t just about health—it’s also about mental wellbeing, relationships, housing, access, and stigma. It’s still used in modern mental health, chronic illness care, and multidisciplinary care planning. But it still relies heavily on professionals and can drift back toward the medical model if not handled carefully.

🏢 Human Services Model – "Serve and Manage"

Origin: Post-WWII welfare systems
Core idea: Large-scale, structured services that aim to meet needs efficiently.

Group homes, day programs, and aged care facilities came from this model. While they provided shelter and routine, they often lacked personal agency, and sometimes created environments that felt controlling or isolating. Many services that started in this model have since modernised, thanks to reforms and feedback from people with lived experience.

👤 Person-Centered Model – "What Matters to You?"

Origin: Disability rights movement (1970s–1990s)
Core idea: The person receiving support is the expert in their own life.

This model focuses on choice, control, and dignity. It underpins systems like the NDIS and My Aged Care, where people are meant to choose their services based on their own goals. It works best when people are well-informed, supported, and empowered—but not everyone has access to advocates, clear communication, or the digital tools needed to fully engage.

🌳 Community-Based Model – "Belonging, Not Just Services"

Origin: Deinstitutionalisation and mental health reforms (1980s–1990s)
Core idea: People should be supported in the community, not separated from it.

This model promotes inclusion, connection, and natural supports—like neighbours, local groups, and workplaces. It works especially well for people with low to moderate support needs who can thrive with a bit of help around driving, cooking, or cleaning. But community-based care only works when the community itself is welcoming and safe—and when systems are set up to offer real backup.

🔄 How Did the Thinking Change? Turning Points in Disability and Care History

The shift from control to care, and from isolation to inclusion, didn’t happen by accident. It came from activism, innovation, and visible resistance to outdated systems.

Here are some key moments and people that challenged old thinking and moved us forward:

🧗‍♀️ The Capitol Crawl (USA, 1990)

In one of the most powerful disability rights protests in history, dozens of activists left their wheelchairs and crawled up the steps of the U.S. Capitol to demand the passing of the Americans with Disabilities Act (ADA).

“I want my civil rights,” said 8-year-old Jennifer Keelan as she pulled herself up the steps.

This moment visibly exposed the inaccessibility of public spaces and helped push through sweeping anti-discrimination laws. It challenged the belief that disability meant passivity—and showed that people with disabilities were ready to lead their own movements.

🩺 Sister Elizabeth Kenny: Clearing Up the Record

Sister Elizabeth Kenny is often credited with revolutionising polio care in Australia during the mid-20th century. While some believe she received formal training on World War I medical ships, historical research shows that although she served as a nurse in the Australian Army Nursing Service during WWI—making multiple voyages on hospital ships and even sustaining an injury—there is no official record of formal nursing qualifications or training specifically on medical ships.

She likely gained her medical experience through voluntary work at a maternity hospital and practical training under a local surgeon in Toowoomba. Her unique methods, including rejecting immobilisation in favour of warmth and movement, challenged the prevailing medical model and helped shift care toward rehabilitation.

🚂 Bessie “Baliy” Henderson and the Australian Inland Mission

Bessie Henderson (often called Sister Baliy) worked with the Australian Inland Mission, bringing healthcare and practical support to remote and marginalised communities. She wasn’t working with a formal disability framework, but her efforts reflect early person-led care: going where people lived, respecting community culture, and seeing people as whole beings, not just patients.

Her approach reflected a community-first, culturally respectful attitude long before it became policy.

🇦🇺 Australian Voices & In‑Depth Reform: Shaping Modern Disability Support

Australia’s disability sector underwent significant transformation in the 1980s and beyond, driven by grassroots advocacy, changing policy, and bold individuals demanding inclusion.

✊ Key Advocates Who Changed the Conversation

Stella Young (1982–2014)
A comedian, journalist, and fierce disability rights campaigner, Stella famously called out so‑called "inspiration porn"—the idea that disability is inherently uplifting. She challenged society’s limiting expectations with wit and clarity like:

“Disability doesn’t make you exceptional, but questioning what you think you know about it does.”

Stella’s legacy continues to shift the narrative about disability—and she remained involved with powerful platforms like the ABC’s Ramp Up and national advisory councils.

Lesley Hall (1954–2013)
A pioneer in connecting disability and feminist action, Lesley co-founded what became Women with Disabilities Australia (WWDA). In 1981, she led protests against the charity-run Miss Australia Quest—highlighting how disempowering stereotypes wrongly shaped public perceptions.

🏛️ Reforms & Sector Shifts in the 1980s

Community-Based Rehabilitation & the CRS
Established in 1941, the Commonwealth Rehabilitation Service (CRS) transitioned in the mid‑1980s from large institutions to smaller local centres. Case-management approaches and Community Living Programs allowed people to live outside institutions—creating more independence and choice.
Disability Services Act 1986
This act marked a formal shift toward structured, smaller-scale services and introduced quality assurance standards in sheltered workshops (later called ADEs). It supported moving away from custodial care toward more community-integrated services.
1981 International Year of Disabled Persons
While technically designated in 1975, the decade around 1981 brought national and global attention to disability rights. In Australia, discussions about access, equity, and deinstitutionalisation intensified—laying the groundwork for future inclusion policies.
Minister Brian Howe & Social Reform
In the mid‑1980s, Minister Brian Howe drove sweeping social security reforms. His tenure brought new emphasis on rehabilitation, training, and inclusion, influencing disability payments and entitlement systems.

🌱 Kirsten Adams: Bringing Early Intervention and Occupational Therapy to Australia

Kirsten Adams studied occupational therapy in the Netherlands before bringing her knowledge and person-centred practices to Australia. She is widely recognized for pioneering early intervention approaches in occupational therapy here, focusing on meaningful activities, capacity building, and environmental adjustments to support individual growth.

Her work emphasised the importance of collaboration with individuals and their support networks, incorporating sensory processing and functional engagement to foster real-life success.

Despite facing resistance from some medical professionals at the time, Kirsten’s dedication to strengths-based, person-centred care has had a lasting impact on disability support in Australia. We also want to acknowledge the medical professionals who saw the potential in these new approaches and the frontline workers who compassionately implemented them. Together, their efforts helped shape modern, holistic support systems that continue to evolve today.

💬 Why These Moments Matter

These weren’t just stories of individuals—they were shifts in culture:

From “these people need managing” → to “these people need rights.”
From “let’s fix them” → to “let’s fix the barriers.”
From passive recipients → to leaders, experts, and advocates.

♥️⚠️ Care vs. Control: A Line We Can’t Afford to Blur

One of the biggest lessons we’ve learned—often the hard way—is that there’s a fine line between care and control.

Too often, what starts as protection becomes restriction.

I’ve met people who were told they couldn’t go outside alone or weren’t allowed to choose their own clothes—not because of risk, but because staff or family were afraid of what might happen.

The difference is who’s in charge of the decision—and whether that person has real choice.

Care	Control
Supports dignity and autonomy	Removes choice
Encourages independence	Assumes dependence
Based on consent	Based on compliance

Even well-meaning control can lead to learned helplessness, distress, or total dependence. On the other hand, real care builds trust, confidence, and capacity. Real care respects the person’s voice—even when it’s expressed in ways we don’t expect.

🌟 From “Let Them Live” to “Help Them Succeed”: Modern Therapies and Support

The old mindset was often brutal—aiming to “fix” or “manage” people with disabilities, sometimes at great cost to dignity and autonomy. Now, the focus is on supporting individuals to succeed on their own terms, respecting their choices and unique ways of living.

Modern therapies include:

Occupational Therapy (OT): Helping people develop or regain daily living skills, promoting independence.
Physiotherapy: Maintaining and improving physical function, often inspired by Sister Kenny’s movement-based methods.
Speech Therapy: Supporting communication and social interaction.
Psychological Support: Addressing mental health, trauma, and wellbeing holistically.
Assistive Technology: Using devices to enhance mobility, communication, and independence.
Community Inclusion Programs: Fostering social connections and participation.

The goal is to create environments where people aren’t just surviving but thriving—supported, respected, and empowered. We must resist the urge to be “brutal” or controlling and instead foster care built on dignity, choice, and trust.

⚡ One Size Doesn’t Fit All

As we move forward, it’s important to balance ideals with realism.

Some people, especially those with complex needs, high-risk behaviours, or severe disabilities, may benefit most from structured or even sheltered environments—as long as those environments are safe, respectful, and well-staffed.
Others may only need basic support—like someone to help with domestic tasks or

transport—and are perfectly capable of managing their own life with the right tools.

Still others thrive in shared living, intentional communities, or family-based care.

Best practice is not about picking one model—it’s about flexibility, dignity, and matching the support to the person, not the other way around.

🔮 Where to From Here?

We’ve come a long way from fairy tales and locked doors—but we’re not done yet.

What we still need:

True flexibility in funding and service options
Listening to lived experience in policy and practice
Better pay, training, and support for frontline workers
Recognition that not everyone can—or wants to—self-manage everything
Respect for cultural, cognitive, and communication differences

We also need to be aware that some old thinking is creeping back in—especially when funding is tight or people are labelled as “too hard.” The push for “cures” over care is also still strong in some areas. We need to resist the idea that disability is only a problem if it can’t be fixed.

The way we support people with disabilities and older Australians is a reflection of our values. It’s not just about cost—it’s about community, respect, and fairness. The models are just maps. The destination is dignity.

Further Reading & Resources:

NDIS Practice Standards – NDIS Commission
Royal Commission Final Report (Australia)
Disfigured: On Fairy Tales, Disability, and Making Space by Amanda Leduc
Scope UK – The Social Model of Disability
WHO Guidelines – Community-Based Rehabilitation
Changelings and Autism in Folklore – via JSTOR or academic sources

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