Segregation? No. For our family, David’s special school met all his needs

Last week the Disability Royal Commission released its recommendations for building a society that supports and includes people with disabilities. These recommendations will inform government disability policy for decades to come.

The most contested aspect of the report regards the ongoing status of special schools and supported accommodation for people with disabilities, with the commissioners being divided on their recommendations.

The Rollo family (from left) siblings Stuart, Jemma and David with mum Jenny on Mother’s Day 2017.

Dr Rhonda Galbally and the two other commissioners who have recommended the closure of these services for people with disabilities have assumed the moral position of speaking on behalf of those “with lived experience of disability”.

These commissioners do not represent the needs or interests of the severely and profoundly intellectually disabled community. More than 350,000 Australians fall into the category of a person with an intellectual disability with a severe or profound core activity limitation.

As the family of a man with profound intellectual and physical disabilities, we feel obligated to respond in the strongest terms to the framing of special schools as “segregation” by these commissioners.

David was born in 1983. He was below weight and size, had high muscle tone, distinct facial features and oddly formed hands. When he was eventually diagnosed with Cornelia de Lange syndrome, a rare congenital disability that involves a range of medical, cognitive and physical challenges, the doctors advised our family to “put him in a home and try again”.

David is so profoundly disabled that he requires constant one-to-one care. He is unable to perform the most basic personal care tasks such as eating, toileting and showering without help. He will never be able to work. Concepts like integration, inclusivity and independence are completely inexplicable to him. He can speak a few words, not sentences, and he requires loved ones and close carers to interpret his needs and desires. Despite this, he is, in many ways, one of the happiest people we know.

After 34 years of constant one-to-one family care, he has spent the past six years living in a group home with close friends, several of whom he met at Karonga, a special school in northern Sydney for people with intellectual disabilities.

Karonga (and the many special schools like it around the country) provides high-quality individualised programs for its students, tailored to meet their specific needs in regard to learning, behavioural and medical support, therapy and community-based programs.

To use the term “segregation” to describe this specialised schooling experience displays ignorance of the lived experience of most students attending these schools, and is offensive to the educators, carers, administrators and families who make up the communities that have formed around them.

In her arguments for closing special institutions for the intellectually disabled, Dr Galbally conflates correlation and causation when she says that “if you go to a special school, you’re 85 per cent more likely to end up in a sheltered workshop and with very limited living options as an adult”.

People who have severe enough disabilities to require education at a special school are far less likely to have the capacity to participate in regular work or housing than those who do not: by definition many of these people cannot perform “normal” cognitive or physical functions. Dr Galbally’s implied assumption that there is something bad about being unable to participate in normal work or housing is itself deeply problematic. People with profound disabilities are not lesser for their inability to do this, nor are their schools at fault.

On the contrary, having access to specialist schools improved the educational, social and health outcomes for David. He was not being segregated or discriminated against. His needs were being met in a highly specialised setting, sensitive to him as a whole person.

Disability exists on a broad spectrum across physical, neurological, psychological and cognitive challenges, with vastly different levels of severity. The notion that a person with any given disability has the unique and inviable right to speak for all other people with disabilities is woefully misguided, particularly given the massive divide in the capabilities and interests of the severely intellectually disabled from many others on this diverse spectrum.

Mainstream education would have isolated David, reducing his access to people like himself; diminishing his social network. Misguided progressive activism, which reduces complex social policy to sloganeering about “representation” and “inclusivity”, is threatening to eradicate hard-won gains in education and housing that were achieved by thousands of mothers, fathers and family members of the severely intellectually disabled over generations in Australia.

Our family, and many like us across the country, have had decades of experience navigating stages of life with a severe intellectual disability. Having access to special schools, community groups, respite care and housing has increased David’s community connection and wellbeing immeasurably. This is, by no reasonable understanding, a system of “segregation”. Any threat to remove this experience for current and future generations of people with intellectual disability is to impoverish their lives and limit our understanding of diversity and inclusion.

With Jenny Rollo.

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