Podcast: Human Rights and Disability

Lisa: 

Hi, my name is Lisa and I have an acquired brain injury, which is also known as an ABI.

Like all humans, I have human rights. These include the right to be treated with respect and to make my own decisions.

Unfortunately, many people with an ABI, including myself, are sometimes treated as if we are not human and we do not have the same rights as other people.

Despite regulations, laws and theoretical practices, our rights are often treated as invisible as our disability.

This is a great shame.

Exploring human rights is a great support to me.

Even though I realise that we are a long way off from fully realising them, and as difficult as it seems, the more we learn about and talk about human rights, the further along the path we get.

I spoke to Dinesh, an Associate Professor in human rights and socio-legal studies, with a particular interest in disability rights.

What are human rights?

Dinesh: 

Well, I guess the simple answer is that human rights are the rights that accrue to individuals because they’re human individuals.

So, if we have a community where only some people get rights and others don't, then that's immediately not a democratic community.

So, if we want a community that's democratic, for example, then we're going to have to have forms of equality that respect individuals on an equal basis with others in that community.

Lisa: 

All this is great in theory.

But many people with disability do not experience this very noble ideal.

Nadia Mattiazzo, the CEO of Women with Disabilities Victoria, says women with disabilities are often overlooked in society.

Nadia:

Often there is, women with disabilities are ignored around government legislation and not necessarily recognised in community organisations and services in terms of access.

Lisa:

So, what can we do to ensure people with disabilities are truly included in society? Nadia has some ideas.

Nadia:

Listening to what women with disabilities say and being curious about their individual circumstances as well as the systemic barriers they experience due to disability.

Women with disabilities have much to contribute as workers, community members, and in leadership positions — not just as service users.

Lisa: 

Maree Ireland from Scope uses a Litewriter to talk, which is a voice synthesiser to communicate.

Maree:

When we do our training, it may be the first time a staff member has communicated with someone who uses a communication device. 

Before, they may have ignored the person and interacted only with their companion.

Now they can see how damaging assumptions are.

Lisa:

Colleen Pearce is the Public Advocate in Victoria and extremely interested in how human rights are applied to people with disability.

Colleen:

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.

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.

Lisa:

For society to be working towards equality, the dignity of everyone needs to be respected.

However, this is not something that can be legislated.

Dinesh explains.

Dinesh:

Dignity is an interesting concept in international human rights law.

The human rights treaties themselves don’t necessarily have an exclusive articulation of a right to dignity.

Dignity appears in human rights treaties all over the place, this word.

Actually, the Convention on the Rights of Persons with Disabilities has probably one of the highest number of mentions of the word dignity in it ,which tells you something about the kinds of exclusions that people with disability routinely face in relation to dignity.

Lisa:

Rights are very aspirational in that they often set the benchmark for how individuals should be treated.

Does anyone in particular have a duty to protect human rights?

Dinesh:

Lots of people would say, ‘Oh, it's the government's responsibility to protect human rights’, or it's the police or it's the law, or it's institutions that have the responsibility to protect human rights.

Actually, a different view is that we all have a responsibility to protect human rights.

So, this view would say, actually, the only way that human rights really come into force, mean anything, is that we build a culture where everybody respects human rights.

Lisa:

Respecting human rights starts with treating people with disability as human beings.

A common frustration amongst people with an ABI is that they are often overlooked without good reason.

I spoke with Anat and Manda who also live with an ABI.

Has society's reaction to your ABI, their knowledge of it, influenced that at all?

Anat:

Initially, after having the ABI, my taxi driver would always turn to my family, friends or carer and ask them where I’m heading to.

I felt quite inexistence, and as though I don’t matter at all.

I think this has improved a little.

Manda:

That’s only happened to me once, at a bank. The bank manager was told that I had a brain injury and so didn’t speak to me again.

‘Hang on, I’m sitting here. Ask me!’

I think that just shows other people’s ignorance.

I don't think it's a reflection on us.

Lisa:

Living with an ABI is difficult.

But living with its invisibility brings additional frustrations.

Neil, a former president of self-advocacy group Brain Injury Matters, explains.

Neil:

I'm expected to be able to participate in society.

People think I'm just the average sort of person, so they can understand why I have any limitations.

Lisa:

Peta, also a past president of Brain Injury Matters, talks about how past connections are often lost after an ABI.

Peta:

I had not that much support post-ABI.

I had a couple of visitors, but I was in rehab for 6 years.

I have a couple of friends who I had pre-ABI and they hung in there, which is nice.

This morning on the tram I had an incredible experience. A guy noticed me looking like a drunk donkey [gentle laughter] and he struck up a conversation with me which is the first conversation I've had in 40 years on public transport!

Lisa:

Brent, a former chairperson of Brain Injury Matters, has a profoundly positive perspective of having an ABI.

Brent:

It’s really changed my life, and in a positive way, like in terms of after my recovery, initial recovery.

It took me about 9 years to mentally get over having my brain injury and to embrace it.

Having a brain injury has become a powerful tool for me because now I represent being the president of Brain Injury Matters.

And it has enabled me to be put into a community, I suppose, with like-minded people who are trying to get the better of themselves having a brain injury.

Having a brain injury is my life now. ... It’s just put my life into a massive community of people who understand having a disability. And I suppose it’s a strength as well.

Lisa:

Anat and Manda have also found some positives in their lives since having an ABI.

Anat:

I feel that after the injury, it caused me to have increased appreciation of the little things in life.

Manda:

If you can be positive and find the good things in life, take them and enjoy every minute.

So yes, that's probably how I've changed.

You do meet some terrific people.

When people say, ‘Oh, you're an inspiration’, I think I'm not interested. I'm just doing the best I can do.

Anat:

People who hear that I have an ABI and they immediately put me in the category of ‘I must be brain-dead and I can’t learn a thing’.

I love to prove to them, actually I can now speak an extra language...

Five languages and I can do things that they can’t dream of.

Lisa:

Having an acquired brain injury is an element of life that is difficult to come to terms with.

As it seems to me, it is a very comprehensive and constantly evolving disability.

But as you’ve heard, it does not mean that we are not human.

We have feelings and abilities and much to teach you. If you are willing to listen.

And we have one important message:

We are human and deserve to be treated as such.

You’ve been listening to ‘Human Rights and Disability’, a podcast produced by the Office of the Public Advocate as part of the Healthy Discussions Project, funded by the Department of Social Services.

I’m Lisa.

I would like to thank everyone who shared their stories of living with an ABI: Anat, Manda, Brent, Peta and Neil.

As well as Colleen Pearce, Victoria’s Public Advocate; Nadia Mattiazzo, the CEO of Women with Disabilities Victoria; Maree Ireland from Scope; and Professor Dinesh Wadiwel from the University of Sydney.