We count what matters, and violence against people with disability matters

The Senate inquiry into violence, abuse and neglect against people with disability heard many horrific stories of violence experienced by adults and children with disability. They experience violence at the hands of intimate partners, parents, informal carers, service providers, teachers, medical professionals, co-residents in institutional settings, and others.

Greens senator Rachel Siewert, handing down the report, observed:

One of the issues that is really clear is that we do not have good data around prevalence. We do not collect this data … Yet that is the only way that we can understand what is going on.

This echoes the concerns of Australian disability researchers in submissions to the inquiry.

Data is essential for political accountability. Violence against people with disability – 18% of the Australian population – is endemic, yet data about it is largely missing.

This lack of data impedes the development of effective policies and programs to prevent and respond to violence against people with disability. It also hampers advocacy efforts.

The lack of data lets governments, services and the community – all of us – off the hook.

What do we count now?

It is well recognised internationally that high-quality population-based prevalence data is needed to respond adequately to violence. In Australia, the ABS Personal Safety Survey (PSS) is regarded as the source of the best data on violence.

In 2012, for the first time, the survey included questions about disability. This enabled comparisons to be made between people with and without disability.

The chilling results of a comprehensive analysis of these comparisons were reported at the Population Health Congress in September. These results will soon be published in the Australian and New Zealand Journal of Public Health.

Findings included that since 15 years of age:

• 28% of women with disability reported sexual violence (compared with 15% of other women);

• 25% of women with disability reported partner violence (compared with 13% of other women);

• 35% of women with disability reported emotional abuse (compared with 19% of other women); and

• men with disability also reported higher levels of sexual violence and partner violence than men without disability, but lower levels than women with disability.

The prevalence of all forms of violence was higher among people with disability.

What counts as violence?

The evidence heard by inquiry chair Rachel Siewert and other senators was horrific, but most of the violence and abuse goes unrecorded.AAP/Sarah Motherwell

But these statistics don’t tell the whole story. This is because of how the PSS collects data. The family and other formal and informal carers who people with disability rely on for support may be perpetrators, but the PSS doesn’t collect information about that.

People with disability also experience what legal researcher Linda Steele calls “lawful violence”. This is violence that against any other person would constitute a serious crime or even torture, but against people with disability is “treatment”.

People with disability may be uniquely vulnerable to forms of violence like solitary confinement, forced medication, physical restraint, withholding food, medication or equipment, rough handling and so forth. Yet this is not counted in the PSS.

The survey includes only people living in private dwellings. This leaves out some of the settings in which people with disability are over-represented. That includes group homes, large residential facilities, psychiatric facilities, aged care facilities, prisons and so on. These settings lend themselves to higher levels of violence and abuse.

The PSS also will only run interviews with individuals. This means anyone who requires any support with communication (like Deaf people or people with communication needs) is automatically excluded. It also samples only adults despite international data showing the prevalence of violence against children with disabilities is much higher.

So, while the PSS shows that people with disability are at higher risk of violence than people without disability, the picture is far from complete.

Other mainstream data collections are also inadequate. Child protection data does not report information on disability of either the child or parent/s, despite numerous commitments to do so under the National Framework for Protecting Australia’s Children. Information about disability is not in the crimes data reported by the Australian Institute of Criminology.

Additionally, our major data collections on disability – the Survey of Disability, Ageing and Carers and the Disability Services National Minimum Data Set – do not collect information on violence.

That is a missed opportunity the inquiry highlighted. Only at the request of the Senate committee has data from the National Disability Abuse and Neglect Hotline been released. It reflects a problematically low reporting rate when compared, for example, with the new NSW Ombudsman’s Reportable Conduct Scheme.

How to make violence against people with disability count

We count what matters, and what matters counts. This is at the heart of accountability. We need information on the types of violence, where it occurs, how often, and who are the perpetrators.

People with disability need to be at the forefront of defining violence to ensure we capture the full complexities of their experiences.

The inquiry recommended questions about disability and violence be included in population surveys conducted by the ABS and recorded in datasets – such as child protection data – held by the Australian Institute of Health and Welfare.

These improvements would help us properly understand the extent of the violence. We could then respond better to the pervasive and hidden human rights violations against some of the most marginalised people in our community.

As Labor senator Claire Moore said in her evidence to the inquiry:

… data is not just evidence that is put out – not just figures and numbers. Data reflects the lived experience of people … Data is the extraction of information that we can do better.

This article was co-authored by Dr Jess Cadwallader, Advocacy Project Manager, Violence Prevention, at People with Disability Australia. It draws in part on her presentation to a symposium on Power and Accountability at the University of Sydney in November 2015.

Further reading: It’s time to fix the power dynamics that allowed the abuse of people with disability

Anne Kavanagh receives funding from the Australian Research Council and the National Health and Medical Research Council. She is a member of the Victorian Disability Advisory Council.

Sally Robinson receives funding from the Australian Research Council, the National Disability Research Working Group and the Royal Commission into Institutional Responses on Child Sexual Abuse. She is a member of the NDIS Intellectual Disability Working Group.