Audio interview with the Victorian Public Advocate

Lisa

My name is Lisa.

In August 2005, I had an accident which left me with, amongst other things, an acquired brain injury or an ABI.

Despite that, I'm still a human being with some of the same fears, thoughts and feelings I had pre-injury.

Acquiring the brain injury was, I believe, one of, if not the greatest thing that could have happened to me.

I say this, as it is the event which has brought about so many changes, with so much learning and so many wants and needs and the want to know, the need to prove, I'm not as stupid as believed by some despite my being a person with a brain injury.

I know that sounds dreadful.

So nonsensical, but that was my world.

This, coupled with my natural desire for knowledge, led me to the need for further study.

So I began my journey to find out how I was going to spend the rest of my time.

This began with what I was supposed to do next, beginning with what I was going to do with my knowledge thus far.

In my previous life, I had a bachelor of arts.

What could I do with that now?

The result, which still hasn't come to its end, was further study, beginning with various certificate courses leading to my Graduate Certificate of

Applied Human Rights at RMIT University.

Pre-coma RMIT was a TAFE, and I had to find out what exactly was a graduate certificate or diploma, which pre-coma did not even exist for me.

The journey is not over yet.

I believe I'm on the right track.

I do not make any guesses or predictions for the future.

I do not trust the future that much.

And here I do not want your pity.  Simply, some understanding.

Given I'm not supposed to be here, everything that's happening, according to some, is extremely lucky.

According to me, very unlucky, but the result of hard work, sometimes really very hard work.

My natural desire for knowledge has also led me to this series of interviews on the theme of human rights.

Today, I am interviewing the Public Advocate, Colleen Pearce.

Your role as a Public Advocate is about promoting and safeguarding the rights and interests of people with a disability.

Do you think that societal discriminatory attitudes are important to consider when safeguarding the rights of people with disability?

Colleen

Absolutely.

And if we start with the UN Convention  on the Rights of People with a Disability, we saw a really big change in the paradigm of how we view people with a disability.

We moved away from seeing people with disabilities as having problems to be managed to being people in their own right, as being the holder of rights.

And while the Convention really shifted the way we think about people with disability as being the holders of rights, society hasn't caught up with us.

These days our office sees disability as a result of the interaction between negative attitudes or an unwelcoming environment with the conditions of a particular person, and it's that interaction.

People with a disability have, although entitled to equality, and equality before the law in particular, we still see them as being very much excluded and unequal in mainstream society.

And it comes from the predominant view of ableism, and that creates significant barriers to inclusion for people with disability.

It's a perpetuation of the old view of disability being viewed through a medical lens, rather than based on a capacity-based approach.

Without having a view of disability as being capacity-based and a flourishing life, then, it's difficult to really ensure the safeguarding of the lives of people with disability.

We often focus on abuse, neglect and exploitation, and that is, in all fairness to the office, that is our remit.

But if we are really going to challenge those societal views, we really need to have a much broader view of safeguarding that does challenge some of the very inherent discriminatory views that come in our society.

Lisa

Thank you.

How important are the values of dignity and autonomy  in the work of the Office of the Public Advocate?

Colleen

They're absolutely fundamental to the work that we do.

It's mentioned specifically in OPA's vision statement, which is OPA's vision, is for a just an inclusive society that respects and promotes the dignity and human rights of all people.

And one of the functions of the Public Advocate, specified in the Guardianship and Administration Act of 2019, is to promote the human rights of persons with a disability and the development of the ability of such persons to act independently.

And to my mind, that is about promoting the inherent dignity of people with disabilities.

I spoke earlier about the importance of the Convention  of the Rights of People with Disability, and that underscores every aspect of OPA's work, and some of the things emphasised in the Convention is people's right to choose where they live and who they live with, to receive the support they need to be included in the community, and to have equal access to community services and facilities that are available to the public.

And all of those speak to the need for us to recognise and cherish the inherent dignity of all people.

Lisa

Does the Office of the Public Advocate ensure equality of rights?

Does it ensure that measures to enhance one right, do not diminish the enjoyment of other rights?

Colleen

Look, OPA can't ensure the equality of rights.

That's something that can only be achieved when we have a whole society working towards that, and we we have a very small but important role to play,

and I like to think that we contribute.

If I go to OPA's diversity statements...

We respect the diverse range of life experience, skills, abilities, cultural backgrounds and the knowledge staff, volunteers and their clients bring to their interactions with us, and understand that one size does not fit all.

We're also committed to being an inclusive organisation, ensuring that everyone we interact with feels valued, respected and heard.

We strive to empower all people to contribute and participate.

But I think the second part of your question  is a more challenging question for our office.

How does it ensure that measures to enhance one right, do not diminish the enjoyment of another right?

If I give you perhaps some examples of that...

If we look at a group home... When our community visitors will visit a group home, and we find that a particular individual in that group home has challenging behaviors that impact on the ability.

How does one weigh up and balance the needs of one person against the other?

People have a right to autonomy and to their own decision making, but, on the other hand, people also have the right to protection and the enjoyment of a life that's free from abuse, neglect and exploitation.

How do we balance competing rights?

And that's often very challenging, and I think these days the balance is tipped in favour of autonomy.

Yet people with cognitive impairments are also entitled to protection.

We know that people with disabilities suffer from very high levels of abuse, far higher than the general population.

And while they suffer from the same types of abuse that everyone in the community suffers from, they also have

particular sorts of abuse that are related to their disability.

So it might be the withholding of mobility supports or the withholding of essential medication, so they suffer from a broader range of abuse than happens in the general community.

So how do we balance that?

And I think that's a particularly difficult question to answer.

And I think in the example I gave you of the community visitor, we would look at how we can support the person who's the perpetrator of violence.

Do they need extra supports?

Is this behavioral support plan being operationalised?

Is it a difficulty with communication?

Do they have unmet needs that mean that their behaviours continue to be challenging?

But at the end of the day, while we try to support the person with the challenging behaviors, ultimately it is those that are in need of protection where I think we go to, and we try very hard to ensure that they are protected as best as can be, in an environment like that, particularly when there is no option for any of the parties to leave.

So it's not easy to answer that question. There's no easy solutions.

It's all very difficult.

But if you start with OPA's values of respect and compassion, integrity and rights and independence, and you use that as the yardstick in these very challenging and complex situations, then we can perhaps find a way forward.

Lisa

And does your work promote social dialogue?

Colleen

I think it does.

I see it as a process whereby myself and others engage, often collaborate, often with government to influence the development of social justice related issues, social protection... and it's that engagement in the dialogue.

So OPA has a number of ways that we participate in social dialogue: we sit on a range of committees, we host roundtables, we have joint projects.

For example, we've done projects with Reinforce and the Victorian Aboriginal Legal Service.

We meet with the Department of Health and the Department of Families Fairness and Housing, where we raise issues around human rights, around issues related to people with disability.

We work with Victoria Police on a range of committees: elder abuse, mental health, disability.

And we present at conferences and we participate with others in forums. We run community education sessions.

All of those are ways in which OPA hopes to participate and promote ideas to encourage social dialogue.

Lisa

Thank you.

And people with disabilities face many and varying barriers in exercising their human rights.

Can you please explain some of those barriers that people with disabilities face exercising their human rights?

Colleen

How long is a piece of string?

How many barriers do people with disability face?

The answer is many, many, many.

So I'm just going to raise a few that I think are really critical.

One of those is around deprivation of liberty.

People with a disability who live in group homes, or other what we call closed environments, often have their human rights limited for a variety of reasons.

Sometimes they're limited because there's insufficient workers,  so they might not be allowed to go out like the rest of the community is, because there's not enough workers.

Sometimes they're subject to restrictive practices, some of which are authorised by the Senior Practitioner and supported by a behavioral support plan.

But sometimes they are unauthorised, so people live in locked environments.

They might have their cupboards locked, they might not have access to food, they might not have access to the internet.

So there's a whole range of ways that people with disability are deprived of their liberty.

Sometimes they're deprived of their liberty in hospital environments, where it's difficult to get disability support workers.

So we recently had a case of a person with a disability in a hospital restrained by four point restraint.

And because there's no authorising mechanism for people with disability in hospitals, that individual was restrained primarily for

occupational health and safety reasons.

So for the protection of the worker, not for the protection or support of the individual.

That's a pretty fundamental issue, and I think one of the most important breaches of human rights for people with disability.

The other is equality before the law.

And we know that many people with disability are not equal before the law, so they may be subject to a guardianship order

for what we call instrumental reasons.

That is not because they are in need of protection or assistance, but because they have an NDIS plan that requires someone to sign it.

So it may be that their human rights are limited because they need someone to sign a legal document.

You have to wonder how that can possibly be, that that's the sole reason.

They have their human rights limited in other ways.

And I think of it really in terms of, perhaps if we look at health care and we look at the project that you're currently engaged with...

And a person has a right to make decisions about their own body and about their own health.

Yet how can they do that if information isn't provided to them in an accessible manner?

If professionals don't take the time that's needed to explain to them, not only what their health issue is, but what the treatment is and what's needed.

Sometimes we get health professionals who refuse treatment to a person with disability, and you ask, why is that so?

And they'll say it's because of their quality of life. 

You say, but that is their life. I mean, they've lived with that disability. They're entitled to a life.

And a refusal of treatment based on a health professionals assumption about what constitutes quality of life can often be discriminatory and, in my view, breaches their human rights.

I think one of the most important human rights is a person's right to safety and protection.

And we know that people with a disability suffer the consequences of violence and abuse very frequently and at higher rates than others in the community.

So in my view, one of the most pressing human rights issues is to ensure that people with a disability are afforded the protection that they are entitled to.

And as a society, we have an obligation as a matter of urgency to address the abuse of people with disability.

So that's a snapshot of some of the ways in which I think that there are barriers for people with disability... barriers that they face in exercising their human rights.