Challenges to the sector: Do you have a majority of people with disabilities on your board, staff, membership?

The Strengthening Disability Advocacy Conference hosted recently in Melbourne by the Disability Advocacy Resource Unit (DARU) included a session on applying a human rights based approach to person-centred service delivery. It asked:

• What role can or should disability advocacy play in a landscape of person-centred service delivery?
• How do we make sure that mainstream services are accessible to people with disability?
• What will best practice look like?

Advocacy for Inclusion CEO Christina Ryan was a panelist at the session and delivered this address to open her contribution, which included a big challenge to all community service organisations in the room.

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I need to make a personal declaration before I begin: I’m the CEO of an independent disability advocacy organisation funded by NDAP (National Disability Advocacy Program), who is also an NDIS (National Disability Insurance Scheme) participant, and who has also been part of the disability rights movement for over 20 years.

There aren’t too many of us who are doing all of those things so it provides me with a rare perspective and it means I can’t divorce my work from my understanding of what it’s like to be a dependent person with disability.

So let’s look at rights based advocacy or disability services.

I want to ditch the term “person centred”? I see it as ableist language that indicates passive people with disabilities should sit and wait for someone else to deliver services to them in a certain way. Urk.

Hands up everyone here who is a human being?

Well now, that means you have human rights, and you have the same rights as every other human being. Simple as that, no compromises, no need to earn them or deserve them. You just have them. Doesn’t matter who you are, where you live, or what you are doing today, you have the same rights as all the other human beings.

When we talk about rights based advocacy delivery at Advocacy for Inclusion we start from first principles. Rather than building advocacy and then applying a rights framework to that, we start with rights and everything else follows.

To do this we need to understand what fundamental human rights principles are.

Not the Convention for the Rights of People with Disabilities (CPRD) but the framework that it hangs off, the Universal Declaration of Human Rights. First up in the Universal Declaration is the statement that we are all equal.

As in everyone, everyone is equal. That means people with disabilities, including the people that we all work with who might have cognitive disabilities or significant communication barriers. Everyone is equal to everyone else.

How does this influence advocacy practice or disability service delivery?

It means the person drives their own space, whether it’s decisions about resolving a barrier or issue, or whether its decisions about what their supports look like and who delivers them. They drive it.

This is because the next fundamental principle to consider is self-determination. This is a tough one for all of us because the whole system we work within has evolved over a couple of centuries to deny people with disabilities self-determination.

As we move deeper into the 21st century Australia is still a long way short of equality and self-determination for people with disabilities.

There are also different levels of self-determination: in advocacy we mainly work at the individual level and think about a single person being self-determined, but don’t forget that self-determination is also a key rights concept in regards to population groups or communities. So, we must also consider self-determination for people with disabilities collectively.

The real challenge for advocacy and service provider organisations is to make equality and self-determination real. To do this we need to stand back and do what the CRPD asks of us, which is to provide support for people to make their own decisions, to live the lives they choose, and be part of the community just like everyone else.

More challengingly I believe we also need to understand that self-determination will never be realised until people with disabilities are the ones making the decisions about the services and the advocacy organisations. Not just individually but collectively as a group within our community.

How many of you have a majority of people with disabilities on your board, or on your staff, or even as your members? Until this happens we are not even close to self-determination. The sector which supports us should also be by and for us.

That is your role and your challenge. It is what you need to be working towards if you truly think people with disabilities are equal and have the same rights as everyone else.

Christina Ryan is the CEO of Advocacy for Inclusion and the Founder of the Disability Leadership Institute.