Unique Leadership of Minority Women conference

Its about being in the room

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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.

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