Building Disability Board Diversity

To reach better levels of diversity we need to throw merit out the window.

Speech by Christina Ryan – 16 May 2019

Perth, for People with Disability WA


I’d like to start by acknowledging the Noongar (noon- ar) people of the Wadjuk nation, who’s land we are meeting on this morning, and pay my respects to Elders past, present and emerging.

Diversity is an ongoing conversation. Its one we keep having because we struggle so hard to achieve diversity, and we struggle even more to be inclusive of diverse people once we have them in our organisations.

I’d like to talk to you about 3 elements this morning: merit, inclusion and competence.


Let’s do a quick check: who here appoints people to your organisation’s board or executive team based on merit? Hands up.

Okay, that’s excellent. Let’s have a look at how we can stop appointing on merit, because we now know that it’s part of the problem, not part of the solution.

A couple of years back the Male Champions of Change got together with Chief Executive Women and they did some research into merit. The Male Champions are focused on gender equality, but fundamentally they are in the same game as us, they are working to build more diversity within their organisations.

The Male Champion’s research discovered that appointing on merit has one outcome: more people who look like you. So, if your organisation is working on becoming more diverse, appointing on merit is the last thing you want to be doing.

Merit based appointments assume that there is a single pathway to seniority and that this path looks like the one that the position’s predecessors took: including having certain qualifications, holding certain types of positions, and working in specific industries to get to wherever you need to be.

The merit trap, as the Male Champions call it, effectively locks people from diverse experiences out of positions, particularly executive and board positions, because the people who have taken the same path are the ones who have the same advantages, backgrounds, education and privileges that you have experienced to get to where you are now.

In other words, people who look like you do, have similar experiences, and approach things in a similar way. They are probably also people you are comfortable with because they are “your” kind of people, and they think the “right way”. If someone’s path is different, it doesn’t matter how competent they are, they won’t be appointed because they aren’t “qualified”.

Our board rooms and executive teams are full of people who are appointed on merit and look at the result. A lack of diversity.


Last year the Disability Leadership Institute undertook research to identify ways to improve inclusion and develop strong inclusive cultures within organisations. To do this we did a global scan to understand what was being done around the globe and how it was working. This global scan led me to wondering if we haven’t been coming at the whole culture and inclusion conversation from the wrong angle. There are organisations that have changed their culture and embedded a more inclusive one from top to bottom. How have they done this?

In an attempt to better understand and serve their consumers, many organisations have established advisory bodies of consumers which provide advice to be fed into the day to day operations of the organisation.

Who here has a consumer advisory body?

This model attempts to bring the voice of consumers into board rooms and executive teams, but it does it at arm’s length. There is no real evidence that such advice is listened to, or acted on, or that it makes a difference to the consumer experience, or more importantly to how the organisation runs every day. More critically, there is strong evidence that the advice is simply ignored if it is inconvenient or poorly understood. Such examples include the National Disability Insurance Agency, and several of the US insurance company advisory bodies that we examined (Anthem, United Healthcare, and Centene). These organisations have clear structures in place that don’t necessarily translate into practice as a stronger consumer voice.

Organisations with advisory bodies need a key person who acts as the channel to ensure that the “advice” is transferred into the organisation as valued input. This transfer doesn’t always happen effectively. Additionally, when that key person departs, or the executive changes, the value of the advisory body faces significant risk with many not being used further, or no longer being valued for their contribution. Advisory bodies often become tokens for publicity or marketing purposes and do not contribute meaningfully, if at all, to organisational policy or practice.

The organisations that do have strong evidence of a consumer voice that contributes to how the organisation is run every day, and how the culture is designed to support a strong and positive consumer experience, are those that employ significant numbers of disabled people (or other target diversity consumer group) and which have a board that has a strong presence of that target group. It is these organisations which have experienced the culture shift required to embed long term consumer engagement. It is these organisations which are ahead of the global pack. (National Council on Disability (US), Association of Community Living (US), Think local act personal (UK) and Uloba (Norway)).

A key feature of organisations with a strong internal presence of consumer voice is that the culture is shifted from within in a sustainable way. This culture shift does not rely on individual key people, rather it is shifted by having a critical mass of the population group within the organisation, throughout its operations. Therefore, leading companies now work to build diversity in their executive and governance teams, particularly featuring population groups that are in their target market. This shift has been underway for decades, primarily featuring gender and race diversity, and now also broader diversity groups including disability.

There are several features of organisations that build consumer voices into their entire operation to “make it real”; these include:

  • significant buy in from the top echelons of the organisations most notably at CEO level,
  • strong representation from the consumer demographic in the board room, and
  • a high proportion of employees with consumer / target market experience.

Without these contributing factors organisations are vulnerable to their intentions slipping because they remain focussed on what is being done “to” the consumers not “with” the consumers.

Sometimes we get too hung up on ticking the diversity box, and not learning the lessons of other elements of business practice, like marketing. Marketing uses techniques which speak directly to the consumer, based on understanding that consumer. The most potent way to go about this is to have people from a particular demographic on both sides of the organisational experience, as staff and board as well as consumers, so that the conversation is authentic.

To affect a real culture shift to become an organisation which understands its target market/s there will, therefore, need to be considerable work done to bring the consumer voice into the board room and the staff group including at executive team level. Most importantly, the shift will need to be driven by the CEO to ensure total organisation embedding.

I enjoy the case study of Tom Peters, a CEO and leadership specialist who has worked with McKinsey and talks about “the ‘squint test:

One, look at a photograph of your exec team. Two, squint. Three: Does the composition of the team look more or less like the composition of the market you aim to serve?”

This example is about gender, when a company realised that it couldn’t successfully sell its product to women without having women as part of its board and executive. At the time, back in the 80s, they had no women, it was an all male board, and they realised that their big problem was that they weren’t talking to women, they were talking at them.

It has been long established that having women in board rooms and executive suites is good for business, particularly if an organisation wants to connect authentically with the female population, yet, curiously, there is not a similar understanding that the same strategies are required for other diversity groups like disabled people. There remains an assumption that disabled people can be spoken “for” and “to”. This thinking was abandoned decades ago in relation to women yet persists in relation to disabled people.

When a consumer / target market voice is embedded within an organisation, whatever that organisation does, it provides a further layer of engagement with its relevant community, and through that, a more robust approach to appropriate structures and processes.

Fundamentally, the culture is shifted organically through critical mass, rather than through one or two key people driving it as with advisory group structures. This provides for a long-term sustainable culture shift that is not reliant on a named process or specific key people.

Deloitte released a report last month which also showed this and took it a step further. They also insisted that there must be diversity inside our board rooms and executive or management teams to ensure sustainable culture shift and recommended that this happens alongside having a strong organisation Inclusion Policy. One that is owned and monitored by the board. This ensures that the board maintains an oversight role of how diversity is adding value to your work, and how it is contributing to your overall decision making and organisational health.

The Disability Leadership Institute has been working with the Victorian Government, Leadership Victoria and Voice At The Table as part of a project to increase the numbers of disabled people on Victorian Government boards and committees.

Some of the measures being taken include:

  • Setting a target
  • Advertising positions to people with disabilities so that they feel encouraged to apply for them. The DLI does this through our National Register of Disability Leaders. Many of the people on that register have done the Company Directors Course or have board careers in the community sector. Many had stopped applying for positions after repeated knockbacks and earlier bad experiences. If the position comes through us, they feel more encouraged to apply for it.
  • Leadership Victoria has been delivering governance training so that those who haven’t got governance experience can learn the basics.
  • Voice At The Table have been delivering training in inclusive meeting practices. This is really great work and I highly recommend it.
  • The DLI also has coaching available for getting your application right and for holding down your appointment once you have it.
  • The DLI has delivered Masterclasses, in recruiting disability to boards, to government board recruiters and chairs.
  • The Victorian Office for Disability also has a requirement that they must be notified of all board and committee positions that become available across government.

None of these mechanisms will have any effect, though, unless there is a commitment to appointing disabled people to boards and committees by the people doing the recruiting.

Stop for a moment, close your eyes, why do you want board diversity? What is the point of having disabled people inside your board room?

Diversity is about embracing the value, the richness, that diversity brings. This means operating differently, ensuring that all board members are equal and contribute equally, and recognizing the skills, expertise and perspective of disability leaders on your board. Disability leaders will operate differently, and you want this, embrace it, value it, use it. It might make you uncomfortable or seem annoying to have to change how you have a conversation, yet this is exactly the outcome you are trying to achieve because it means you are being pushed outside your box and having your perspective disrupted.

Disability in your board room is not about ticking a box, it’s about improving your board’s decision making and your organisation’s overall health. It’s about going outside your regular networks to those that you don’t normally engage with, it’s about stepping outside your comfort zone.

There isn’t much point, though, in appointing disability leaders to your board or committee if they aren’t valued for their contribution. This seems like an unnecessary thing to say, yet we’ve had many stories come to us at the DLI from board members who are never sent the papers in a format they can read, or aren’t given time to hear what is happening via their interpreter, and even highly experienced board members who are never given the opportunity to speak and share their views. They are, quite literally, token appointments.

Diversity is also not assimilation. There isn’t a lot of value in finding people of diversity to be on your board and then expecting them to think and act as you do. You want to be taken outside your comfort zone, sometimes you will hear perspectives that make you fidget, and this is exactly what you want, no matter how awkward it makes you feel.


A further interesting element of the recent Deloitte report was that they identified that appointments are usually made based on confidence not competence. This takes us right back to the merit trap and the path required to be considered qualified.

To avoid the merit trap we need to start thinking about how we source our people, both board and staff, and how we measure “merit”. This is where competence comes in.

Nobody is suggesting for a minute that you should not be recruiting competent people who are the best person for the job, including on your board. Problem is, merit isn’t finding those people for us, so how do we go about it?

Alan Joyce from Qantas is an original member of the Male Champions of Change. Qantas decided to achieve a gender balance amongst its pilots. The usual route to becoming a pilot is through the engineering division, apparently, so Qantas started making sure that its engineering division intake was skewed towards women. At one point 100% of their intake was women. Many questions were asked, but they stuck with it.

The aim of the program, and target, was to get STEM minded women inside Qantas and then work them through to becoming pilots, including international pilots. Nobody will argue that competence is a key driver here. Qantas isn’t going to risk its reputation on recruiting token women, rather they recruited women who had a strong STEM background and who could be trained in aircraft engineering with a view to becoming pilots. This is certainly not the “merit” based route, yet it will result in a large number of highly skilled women pilots joining the Qantas workforce. These pilots will be as good as any other Qantas pilot that came before them, and Qantas will also have achieved its gender balance goal.

Using competence to recruit is about not listening to the loudest most confident voice, nor is it about falling into the “merit trap” of appointing the person with the CV that contains certain qualifications and previous positions.

Competence is about recognising the skills, expertise and abilities that the position requires and recruiting for those. Increasingly business is recruiting people from outside their field because this gives them the diversity of thought and experience that helps them to be more innovative.

While people with disabilities may not have undertaken management positions or completed the Company Directors Course (although many have), there are certainly plenty to choose from who have significant expertise, skills and competence in the skills that governance requires. For example, I was talking to a DLI member last week who has no formal qualifications in risk management, yet they have significant expertise which allows them to identify and judge levels of risk in given situations. This has proven to be a strong contributor to the boards that they sit on. Many disabled people are very good at risk because we are making constant risk-based judgements about our own safety on a daily basis.

There is also an increasing body of research that shows that disabled people are 10% more innovative in the workplace, have strong lateral thinking and problem-solving capacities, and are highly collaborative and inclusive. These aren’t generic qualities, but they are significantly present amongst disability leaders.

Why would you risk missing out on that?

Pulling all this together:

  • we want people with disabilities in our board rooms and management teams because its good for our business, particularly if we have any ambition to be serving disabled people in our day to day work.
  • To reach better levels of diversity we need to throw merit out the window as an outdated concept and start recruiting on competence.
  • Our boards and executive teams should reflect the people that we are serving, our target market.
  • Boards must take ownership of inclusion by having policies and monitoring systems in place to ensure their organisation is welcoming diversity and sustaining it.

Thank you.

Unique Leadership of Minority Women conference

Its about being in the room

Keynote address by Christina Ryan

Sydney – 27 September 2017


Acknowledge traditional owners.


I’ve spent the last 20 years working on violence against women with disabilities. It’s a soul destroying space which hasn’t shifted at all in 2 decades and which remains largely invisible. Half of all reported incidents of violence against women in Australia are against women with disabilities, yet we are still asked to prove that there is a problem, and still expected to find mainstream response services adequate when its long been recognised that women from other minority groups require specialist solutions appropriate to them.


At the COAG summit on violence against women, this time last year, I was one of 3 women with disabilities present, that equates to 1.5% of delegates, yet we are 20% of Australian women and half the violence against women problem. Don’t worry we’re used to this kind of marginalisation, it’s standard. Our Indigenous sisters who also experience appalling levels of violence, had about 40 delegates, quite rightly, a specialist break out focus group, and speaking spots as facilitators. Yet we were marginalised and through that silenced.


So, with so much still to do in the violence space why have I turned my attention to talking about disability leadership? How do these 2 things relate to each other, do they relate at all?


Yes, totally.


Because as long as we are not in leadership positions we are not equal. While we are not equal we will continue to be marginalised. I believe that the high levels of violence directly relate to the very low levels of women with disabilities in leadership positions. Our lack of value as members of the community. It’s as simple as that.


What did we do when we found ourselves so outnumbered at the COAG summit and shoved into a conglomerate diversity group which also included LGBTIQ women, culturally diverse women, and men who experienced violence? Well we caucused, and we pushed, and we made sure we spoke up a lot and we insisted on language that became Summit language. What we did was ensure that women with disabilities were not invisible in the Outcomes, even if we were barely in the room and marginalised within it. How did I know that this was the way to overcome our marginalisation? Well I’d dealt with situations like this before and I’ll tell you about them shortly.


This is the unique skill of disabled women that I have learned over 2 decades. And over that time, it has made a difference and it has changed the understanding of disability in various forums.


Earlier this year I was debriefing my team after yet another 4 Corners program looking at the appalling levels of violence experienced by people with disabilities, particularly those expected to live in congregate living arrangements. What some of us call institutions. My team was talking about the program because this is their work, they are at the coalface of responding to what happens to people in these places and trying to do something about it. The disability movement has been calling for a royal commission for some time, but nobody wants to touch it, it would be a Pandora’s box and force governments to face up to some horrible truths that would cost them too much money to deal with, so its best ignored. It’s also easy to continue to ignore something when there are no disabled women in any of the leadership forums which make decisions about government priorities and budgets.


As we debriefed one of the team became quite distressed, crying out “why won’t they just listen to what we are saying, why do we keep having to say it over and over again!”. It’s a good question and there is a pretty basic answer: because we are not equal. Disabled people, particularly women, in this country are still less than human, we’re not proper women, and certainly shouldn’t be believed when we speak up about what is happening to us. Yes, it is that serious. We are not seen as competent, we are ignored in discussions, and we are usually not even in the room.


What’s going on?


Let’s just stop here for a second. Close your eyes. I want you to name 5 disabled women leaders that you know, that are alive and working today, who are active in your space. I’ll give you a second.


Okay, how did we do? Did anyone get to 5? Remember we are talking about 20% of Australian women. Now take out the Paralympians and how many have you got left? Does anyone still have 5 women leaders with disabilities?


Why did I say, “take out the Paralympians”? Well not because they aren’t wonderful people and they aren’t doing great things, they certainly are, but because in Australia and in most countries, that is the only leadership pathway available to people with disabilities. There is nothing else. You can either be an elite athlete, and make something from your success once you are back home, or there is nothing. We have never had a consistent ongoing program in Australia to develop disability leaders or to support those who are doing leadership work. You either make it in the mainstream or nothing.


So, we’ve had to get highly inventive to have the successes that we have had.


Unlike our colleagues in other diversity groups who have had specialist leadership programs for some time, disabled people must simply cut it in the mainstream. No prizes for guessing why there aren’t many disabled leaders kicking around.  In fact, our research shows that most of the disability leaders who access mainstream leadership training are then marginalised and never get to use their skills and qualifications.


Last year I had one of those moments of revelation you get from time to time. I realised that disabled people would not be listened to while we remained outside of the key conversations that shape our community and our country. I know about being in the room, it’s what I’ve been working at doing for 20 years and its where I’ve made a difference for my community; by being in mainstream spaces that disabled women don’t normally go.


So, I established the Disability Leadership Institute to provide Australia’s first ongoing program of disability leadership development and support. I got sick of dealing with violence as an outcome of inequality and now I am working on addressing the inequality directly by making sure that we have leaders, skilled up and ready to be in the room.


Back to that story from before.


A few years ago, I was on the official Australian delegation to the Commission on the Status of Women (CSW). This is a major annual United Nations forum which carries forward the work of the Beijing global conference for women held in 1995. Australia sends a delegation each year and includes NGO reps on that delegation. It’s taken very seriously.


As a mainstream forum of the UN this is a space where disabled women are simply not present. The building isn’t even built to cater for people with disabilities and various security work arounds had to be achieved to even get me into the meetings that I was required to attend. Truthfully, I don’t think the Australian Government really understood just how radical it was to include me on their delegation. But that’s okay, what was potentially tokenism at home became a global game changer.


This work requires a strong stomach. As the only member of a minority group present inside the forum I had to work to make sure that the 2 million Australian women I was representing (for WWDA) were noticed. I was also painfully aware that it wasn’t just 2 million Australian women, it was potentially half a billion women globally who were relying on me to be seen and heard. No pressure there then.


What I did know is that my sisters in the global disability movement knew I was there and were watching. How could I make a difference for them and use this rare opportunity to best effect?


The answer was very simple, tough to execute, but very simple in theory and it is my gift to you all today: I made sure I was in the room.


There are simply no disabled people in mainstream forums at the UN. There are even less disabled women. So, I made sure I was in the room. While other members of our delegation went off sightseeing, or participated in NGO sessions at CSW in buildings outside the UN, I sat alongside our delegation head while she worked to negotiate the Outcomes. (Only the delegation head is permitted to speak within such forums.) It was 2 weeks of exhaustion, marginalisation, being stared at by delegates from other countries, and lambasted by some members of my own delegation for taking up too much space. It was a very isolating experience.


So, why would someone do this? Well I was there for 2 million Australian women, and half a billion women globally and I knew it. The impact of me being in the room is that they could not forget disability. See, with me you get a bonus, you can tell I’m disabled just by looking. So, it’s hard to ignore disability when I’m there. For many delegates from other countries and groupings this made them incredibly uncomfortable and even led to deliberate attempts to have me removed.


End result? Australia had a major victory with new language in the Outcomes about women with disabilities and other minority women, we also managed to include language about intersectionality for the first time. That language is still there today and monitored closely each year by disabled women globally to ensure we are not slipping back into invisibility.


Another thing happened during that time: when delivering her report to the plenary session the CEDAW Committee chair mentioned women with disabilities. It was also mentioned in the hard copy of her speech circulated to those of us on the floor of the General Assembly. Yet, weeks later when the official version was loaded onto the CEDAW Committee website, that reference was absent. Because I was in the room, had heard the reference and had a copy of the early version of the speech which mentioned women with disabilities, the International Network of Women with Disabilities was able to mobilise. We approached the CEDAW secretariat and insisted that they change the record. They resisted, we insisted. Eventually I scanned my copy of the speech and we sent that in via Women Enabled (our international umbrella body) and they were left with no option except to change the official record. Because I was in the room we were unable to be made invisible again, because I was in the room I had the information and resources to get the official record changed. There is no other way that could have happened.


This resulted in women with disabilities raising our profile with other mainstream UN forums like the CEDAW committee and secretariat, and with UNWomen which was launched while I was there. There is now regular consideration of women with disabilities by the CEDAW committee, including work on violence only last month, and UNWomen makes sure it has a woman with disability on its executive, currently the fabulous Nidhi Goyal.


The other major outcome has been the opening up of these mainstream UN forums to women with disabilities globally. You see I sent a daily ebulletin out to my networks reporting on what was happening and the disability perspective on it. This has since become a standard expectation for those representing the disability movement at UN forums.


Suddenly my sisters realised that they could do this, that they should do this, and they have increasingly participated in treaty reporting processes, and other mainstream forums. They realised that they should also be in the room. There are now disabled women’s caucuses at CSW where previously there weren’t even any disabled women. There are regular side events (the government sponsored in depth discussions that happen on the sidelines.) There is an expectation that women with disabilities will be referred to explicitly and that our priorities will be considered.


Additionally, disabled women are now regularly members of NGO delegations to treaty reporting processes like CEDAW. I’ve been particularly proud of the support I’ve given to the Indian and UK women in this regard, but also, through CREA, to rights activists in Botswana, Uganda, Nepal, Senegal and Croatia to name a few.


All this just because I insisted on being in the room.


When you are highly marginalised its crucial to be inventive and persistent. We don’t have any other option, if we want to be heard we have to get clever. We’re not wanted in these spaces, we make people feel uncomfortable and awkward. In some countries, whose delegates were present at CSW, disability is still a great shame and disabled women particularly are still slung in institutions or hidden away in back rooms. Claiming space in that room was also claiming space on the agenda and in the language. It signalled a culture shift that has become unstoppable.


If we can do this in international forums then we must also start doing it at home. A survey undertaken by the Disability Leadership Institute last year showed that over ¾ of Australian disability leaders are working within disability specific spaces. We are not in the mainstream, we are not claiming space in the rooms of decision making, and we are not part of the public discourse. This renders us invisible and it makes it easy to forget our priorities and perspective when formulating public policy.


I didn’t wait to be asked at the UN, and it’s time we stopped waiting to be asked at home in Australia.


Being in the room is a skill, but leadership isn’t just about skills, it’s also about attributes or what you might call personal qualities. The most evident attribute in successful women disability leaders that I have observed is resilience. A gold standard of the world’s best leaders, the holy grail of leadership attributes is something we could bottle and sell if that were possible. Curiously, the enormous body of work on resilience implies that this attribute is a tough one to achieve and takes a lifetime of learning. That is not the experience of me and my sisters in the disability movement. There are many podcasts about resilience which all seem to feature retired (white) military men, yet women with disabilities do this one literally lying down.


We are resilient. We are the home of resilience. In her recent feature with Australian Story Kiruna Stamell referred to the “energy required to not give a fuck”. Well that energy is resilience.


Women with disabilities are still being silenced, marginalised, kept out of the room, publicly and privately shamed into silence, and yet we keep doing our work and changing the world. Often, we are doing this while living in enormous chronic pain. You haven’t met resilience until you’ve worked alongside a woman with disability. In some ways this is our superpower, our strength, but before I get into inspiration porn and talking up the freak show, I want to pull back and say it’s true. Unambiguously true and real that we have incredible persistence and strength in the face of being constantly told, overtly and tacitly, that we are not wanted, are an inconvenience, are an embarrassment, make everyone uncomfortable.


To remain in those rooms, to effect change, and to go back and do it again has required resilience in spades. Perhaps it is that which makes those around us uncomfortable? When we are assumed to be weak and delicate it turns out we are the strongest people in the room.


Alongside setting up the Disability Leadership Institute I’ve also received a Westpac Social Change Fellowship. I’ve been talking to diversity practitioners across a range of government and corporate agencies to better understand what is happening in disability leadership and what structures for diversity have worked, haven’t worked and might be useful.


I discovered something a bit shocking very early on: it is still totally outside scope to put the 2 words disability and leadership in the same sentence. Disability leadership wasn’t deliberately excluded, it just simply hadn’t occurred to anyone that it existed and that they should be doing something about it. There was a total absence of action to build and support disability leaders within our leading government and corporate agencies even in organisations that have strong number of disability employees in their workforce.


Once again, being in the room has seen a difference. Six months after I started those conversations several agencies have realised that just building up the numbers in their disability workforce is only the beginning and they need to look at pathways to leadership and how to develop future leaders for their organisation, including c suite and executive disability leaders. We won’t get real change until we also have CEOs at the highest level and heads of government agencies. This is a very small beginning but it’s started and that’s the important thing.


When we are highly marginalised, invisible and silenced, simply being in the room is a remarkably powerful skill which acts as a reminder of our existence. Even if we don’t get to speak we can no longer be forgotten by decision makers and agenda setters. Clearly the aim is to be influencers within high level decision making forums, but we must start somewhere and for women with disabilities we are still back at the start.


We’ve become inventive, persistent, but most of all resilient in ensuring that our existence is remembered and that we play a role in shaping the agenda. We are some of the strongest people you will ever know and we have now decided that it’s time to do something about our marginalisation. Yes, the world should be taking notice of that and it should be getting excited, because we have a contribution to make that will change everything, forever.


We are making a difference but the best is yet to come!


Thank you.




Contribution for panel Enter Stage Rights: Strengthening Disability Advocacy Conference

Equality is the thing

Melbourne – 2 September 2016


By Christina Ryan – DLI CEO

I need to make a personal declaration before I begin: I’m the CEO of an independent disability advocacy organisation funded by NDAP, who is also an NDIS 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 CRPD 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 Founder of the Disability Leadership Institute and was the CEO of Advocacy for Inclusion at this time.