Sue Salthouse

Disability and Human Rights Activist

Sue has always had a commitment to social justice issues Her feminist commitment was formed during her secondary school years at an all-girls school which encouraged students to follow non-traditional professional careers. The world of disability advocacy has provided her with new and wider perspectives on how best to work for, and on behalf of, people who feel powerless and discriminated against.

Her disability activism began in the late nineties when she returned to work after the accident which made her a paraplegic. She honed her leadership skills listening to others and watching role models in the community.

Sue believes the hallmark of a good feminist leader is someone who is able to consult and connect in order to solve a problem – someone who recognises the skills in the collective, nurtures them and supports others to take action with her.

Sue believes that the UN human rights conventions outline the actions that need to be taken to achieve an equitable and inclusive society.

What has WWDACT achieved in the last ten years to improve the outcomes for women with disabilities?

I think that through the persistence of a small core number of women in Australia we have made a difference in being recognised. I think our influence at the United Nations (UN) has made a difference there, too. What we notice is that women with disabilities (WWD) have been included on a list of vulnerable people. Their needs as a group have been mentioned. WWDACT members have been involved in work done mainly through Women With Disabilities Australia.

What we have done with persistence and resilience is advocate for having targeted special measures address the situation for women with disabilities. So if we look at the human rights treaties, for instance, of which Australia is a signatory at the UN, their consistent, as well as mainstream measures we must also have targeted measures to address the inequalities that such groups face through the intersectional influence of their different attributes.

So we have seen that the situation of Australian WWD has been lifted up into the targeted measure’s group. This means that there are very few policies in the area of women and of disability that do not have some dedicated funding to look at the situation for women with disabilities.

We’ve seen leadership from a variety of organisations make a difference here. WWDA, People with Disabilities Australia and the First Peoples Disability Network of Australia have consistently represented their members in Geneva and New York about the UN Convention of the Rights of People with Disabilities.

In the ACT we have also seen, because of the consistent lobbying and voice to have a seat at the table, that WWDACT have had little, consistent drips of funding in order to lift the status of WWD. We had a focus on violence against women with disabilities in the ACT as has been the national trend. And there has been specific money that has come to WWD. But more than that, we have been included at the policy level. And government now makes sure they consult with WWD at the policy level. We still say it isn’t enough and we still notice times when we drop off the radar. But a core group of women leaders of WWDACT make sure our voices get heard again. We make sure we are back in their sights and that we are included.

A lot of the work we do is still about awareness raising. The number of times that inclusion needs are not thought about, let alone met, means we have to be vigilant. It is still a big battle. We have to be resilient and persistent about it. Every now and again I get exhausted and frustrated, but it is something you can’t abandon.

Plenty of work to do

It is very important that we keep getting the message out about what we do because I think there is still a gap between what I see as the women leaders and the women with disabilities who are experiencing discrimination and exclusion on the ground. The latter group would have very little vision of the leadership group and the work we are doing, and they would be probably saying that they are not seeing any differences. So we still have a great deal of work to do.

One important leadership task is finding, nurturing and mentoring young women leaders in the space, or young women who have the capacity and interest in being women leaders. I know from the number of times I am called on to speak as an advocate, that the pool is very small. Every time I am asked is an indictment of our lack of success in growing that upper echelon of women leaders with disabilities. And I say so often that I have had the opportunity to give voice to the voiceless because of my financial circumstances. Many WWD - if they have a job, it is a low paying job. If the disability support pension is their primary source of income, their energies are focused on managing finances so that they can have a decent life, let alone be spending time and effort to going to things that are representative for WWD. So we still have a very vexed situation.

It was brought home to me by members on our board of WWDA that to improve their economic situation, to have economic security, they probably need to work more hours but their disability precludes them from working more hours. Particularly when women are in situations where they have to leave a violent partner, their options are severely limited, because they can’t increase their work hours. Economic security for all women, especially women forced to leave partnerships, is very precarious. But when you have a disability, it’s even more so.

One thing that has changed for us in the quest for future leaders is the situation with tertiary training. When it isn’t funded, when WWD are doing their tertiary training and have expectations of joining the workforce, their ability to devote time to being an advocate is much diminished. When we are in the workforce, I think we need to acknowledge the degree to which WWD have to put in 120% effort to keep up with their colleagues. And that extra 20% is directly attributable to the impact of their disability. This distracts from their ability to be an advocate. I talk to so many of them - I’m proud of their expectation to be in the workforce, it is really hard to ask them to redirect their energy to be a voice for women who are lower status than themselves.

We are putting programs in place to encourage people. I had great hopes - I contribute scholarships to the University of Canberra (UC) students. The scholarships are for young WWD. But despite my semi nurturing of these young women, they haven’t wanted to have a bar of leadership. They don’t see themselves as leaders and also, they are concentrating on getting through their degree. So despite me offering the opportunities to lead the scholarship recipients so far have disappeared into the woodwork. They are not even interested in exploring these leadership opportunities. They are “silver spooners”, like me, relatively privileged women, who have succeeded in the education system.

At a policy level, a seat at the table is really important, but we also need to somehow be able to engage with and let PWD know that we are trying to make changes that will affect their lives for the better. Informing the discussion for WWDACT means that we do have to consult and survey, but we also have to be part of groups that are in the discussion space. So we have to be present as advocates at the table, we have to be at the table when policy makers are talking. And we also have to continuously engage with constituents to get their stories. We have to engage with people in distress, so although we are not an advocacy agency for individuals, we still have to look at the data that comes to us, forming our opinions through that and advocating at a policy level through that.

At WWDACT we have been trying to plan for succession for so long! There are four of us who have been on the board and its various iterations for more than 20 years. There is a real danger in that, because you can see the situation that we could disappear. Succession planning is a huge challenge but I think it is for many community organisations. We tend to feel - if not us, who? Is it one of those things, if the organisation was to fail, would it have to be reinvented?

A two-tier system

Whilst things are improving for some WWD, it is a two-tier system. In the ACT there are nearly 32,000 women who identify themselves as having a disability, according to an Australian Bureau of Statistics Survey of Disability and Carers (ABS SDAC). So when we look at WWD in the workforce, only nine % of women in the workforce are WWD, and only 4% of the total workforce are WWD. That is taking both part and full-time jobs into account. That isn’t a large percentage and that has implications for our economic security. Other things come out of the ABS SDAC that are pertinent. About a third of women who are primary carers of people with disabilities also actually have a disability themselves. That has to be acknowledged.

We also need research into clustering of disability. I know that a lot of people with disabilities (PWD) are also primary carers of children with disabilities (CWD) but not necessarily of a similar type as their mothers. So this needs research.

So there are two tiered systems and there are a lot of people that WWDACT isn’t reaching, and they are probably not affiliated with any organisations. They will be experiencing gaps in services; they can’t afford them, or can’t travel to them for whatever reasons. They are probably experiencing shortfall in the amount of care they receive and the quality of the support.

The benefits of working in the ACT

WE are very lucky in the ACT because we have direct contact with our politicians. There are no barriers between me and the Minister for Women, or the Minister for Disabilities, or me and our Members of the Legislative Assembly (MLA). I can talk to them at any stage and they can talk to me. That is a real plus in the ACT.

Most of our politicians of both persuasions, are very social-justice oriented. The current (2018) government is very mindful of the experience of people with disabilities. We can argue that they are not allocating enough budget, but they are wanting to engage with the community. We can say there are shortfalls in their responses, but they want to engage, and that is very different to most other jurisdictions. Women with Disabilities Victoria continues to be a strong voice in their jurisdiction - particularly in the area of violence against women. As an advocacy group, they are great operators and very well acknowledged. They are real organisational leaders.

I’ve been a leader in the ACT at a time when two really important social issues have come to the fore; the NDIS and violence against women campaigns. I think it was inevitable that working in the WWD space that this nexus should come to the fore. I think in the ACT, because we are a human rights jurisdiction, which makes a difference, and our disability commissioner saw that so many reports were coming that were related to violence against women, she led change. She was the person who instigated that approaches to deal with violence against women and abuse of people with disabilities be brought together to sit at the same table to develop a crisis response to women with disabilities experiencing violence. That was consolidated in 2014-15 and funded through the Victims of Crime Commissioner. Now it has to be done through NDIS funding - so now we are looking at how this can be expedited.

Given our budget, we are very productive and provide excellent value for money.

We are funded through the Community Services directorate, which houses the Offices for Disability and For Women. We have a CEO who works 25 hours a week, we have a membership secretary who works for 4 hours a week, and we have project money. I work at least 50% of my time on it. I’m doing project work, submissions, responding to things. Our CEO doesn’t have a disclosed disability but our membership person does. We are looking to employ people with disabilities, but we didn’t have any applications from women with disabilities for the CEO position when it was advertised.

Leadership, diversity and the NDIS

Not all my leadership is in the disability sector, but a high percentage of it is. I was a committee member of the Australia Nepal Friendship Society for many years but I am no longer on that committee. But I still have an interest in this. I did intend to go back into the science/ecology/sustainablity sector but I never achieved that, because there is so much work to do! And I meet a great class of people in the disability sector.

The ACT had a disability advisory council and I chaired that in the formative years of the NDIS when the ACT government was bargaining at the COAG level for how much money would go into the NDIS. The ACT government was the first government to put up its hand to be a trial site, with then Chief Minister Katy Gallagher volunteering very early on. Despite that, the first roll-out began in regions in Vic and NSW.

I was chair of the Disability Advisory Council from about 2012 - 2016. We had various name changes to that group! By the 30 June of 2016, we were completely officially “rolled out”. We have hit all the teething troubles that the NDIS has had and we continue to be in that space. Particular challenges for the NDIS include knowing what eligibility means. Also, enabling both individuals and service providers to make claims for money expended in a timely manner. They are the main sticking points.

I am no longer on what is now called the Disability Reference Group that reports to the Minister and has a continual interaction with the NDIS taskforce. Instead I am the ACT Rep on the NDIS Independent Advisory Committee. This committee sits to the side but reports directly to the board of the National Disability Insurance Agency (NDIA). It is an important committee chaired by Rhonda Galbally - a person with disabilities who is on the NDIA board.

Unfortunately, the composition of that board is no longer balanced (4 women 8 men) – and this matters terribly! There are only 3 people with disabilities and 1 family person (a primary carer of a person with disabilities) on the board. The disability community was very disappointed that there were not more people with disabilities on the board.

The new board has a much more business/economics capacity. So does the CEO (in 2018). That is probably appropriate for the organisation at this time in the evolution of the board. Maybe they could have found more people with disabilities to represent on the board if they looked hard enough, but the fact that they didn’t is indicative of the lack of recognition of people working in the business space, and also perhaps of a glass ceiling of some sort with people with disabilities - certainly for WWD. There are very few WWD working in the mainstream area who have the recognised skills that could be brought onto boards. Christina Ryan is creating a register of people with disabilities and their expertise to make them more visible and harder to overlook.

Unfortunately, many organisations see the word ‘diversity’ and take it to mean only gender diversity. They won’t look at any other aspect of diversity required for a truly diverse organisation.

Impact of the NDIS

In the ACT we are a test case of the NDIS because we are the first jurisdiction to be fully rolled out. The ACT government itself has been very proactive in trying to do things right and trying to manage the process of bargaining.

So the ACT Government has really tried not to defund essential services. They didn’t quite get it right in the therapy services area, although anecdotally it is tracking OK now. Therapists reorganised themselves and privatised. So now we want to be careful to guard against a therapeutic response. We need to make sure that we can have an ordinary life without too much emphasis on diagnosis. But in the early childhood sector there is a lot of therapy going on.

One of the things we know about the introduction of the NDIS and changes in aged care as that we need to double the workforce immediately. We need to find, train and retain support workers. Theoretically there should be a large cohort of support workers developing in this market place, and there should be a career structure being developed for them. But I use the term caring advisedly. That’s because of the shortfalls in numbers and training ability. There is no money in the NDIS model for training.

Even the best service provider organisations find it hard to do adequate caring in this context. Support workers are often new arrivals to Australia, refugees and students. Whilst there are some exemplary support workers, there are others where we can’t use the word “care” to describe the quality of their work.

As well as quality, reliability is a big industry challenge. The number of people who I hear of who rely on a support worker to get them ready for work in the morning, and then their support worker doesn’t show up - it compromises them terribly. It’s an ongoing problem for all people working who rely on support workers to get them up and get them to bed. Support worker organisations don’t seem to have the capacity or a system of emergency workers. There is nothing like the education department supply teacher system. We’ve talked about having a general pool for all service provider companies in a certain area.

To improve quality, we’ve got to put more energy into helping and supporting service provider organisations to enable their support workers to see a real calling in supporting this person to have the best possible community and ordinary life.

So we are a test case in that area. We are also going to be a test case in how the NDIS responds to a change of plan review, which might be triggered when a woman leaves a violent relationship. As an organisation we have been working a lot in the areas of violence against women with disability and the access to health services. We have a newsletter and we do periodic surveys. We are about to do another survey of our constituents regarding their interaction with the NDIS.

Challenges for women in the NDIS

Conversations about challenges are happening at the advisory group level and within service provider organisations, and at the family level. But for many people with severe and complex disabilities or caring for people with them, every day is a challenge.

NDIS has catchwords of choice and control and of being person-centred, and they don’t change! This is what we are aiming towards! From a leadership perspective, this is where a seat at the table is of such importance and that we keep our eye on what the philosophical objective of this organisation is. We need to keep an eye on the anomalies that we observe in its operation. We really need to have strong advocates at the table. We are still seeing that the allocation of numbers and size of packages goes to men rather than women.

There are so many factors in that. One of them is diagnoses of autism, which are skewed towards the diagnosis of boys. There are far more boys than girls in some age cohorts. So we see that services are still skewed (60%) to men.

Part of that happens because women still act as women saying ‘I don’t need that, I can manage’. (Of course some women don’t use that rhetoric.) Some is about parents saying that they want to protect their daughters and care for them, themselves. So there are some factors to indicate where women don’t ask for services. But there are also many cases where women have received terrible service.

Then there is, of course, the factor that people have experienced PTSD, and operate with vicarious trauma in their lives, which changes how they operate. The relevance of that in the disability sector is not yet recognised. People are treated according to their disability, rather than looking behind that to see the trauma in their lives. We still have to look at that in the NDIS. A high percentage of people whose primary disability is something else, also have chronic mental health conditions. Probably over 50%! These conditions arise partly because of their primary disability.

In the cognitive and intellectual disability space it is not recognised that the way women behave is to do with the trauma they have experienced. If that was recognised, we would have them assuming autonomy and capacity at a greater level than they currently do.

My real hope is that children with disabilities coming through schooling now should have a much greater sense of themselves as worthwhile, and much greater agency and autonomy to expect better treatment in the world.

WWDACT and responses to domestic violence

It’s inevitable that we work in the domestic violence space. We have a huge diversity within the community. Also, women with disabilities live in a wider diversity of locations than non-disabled women. We’re living in hospitals, prisons, other institutions, caravans, group houses, suburbia. When we look at violence in our lives, WWD experience all the same violence in their families and intimate relationships as non-disabled women. But when they are looking for pathways to safety, their pathways are severely limited, because of access issues and lack of ability to change their economic circumstances. When you consider women in group houses, things can be very complicated. Getting a response to a disclosure of violence is much harder as well.

In the ACT we have had a ‘Staying@Home program, in which the perpetrator is removed and the woman and children stay in the family home, which is an option and influences the way the police operate. But it is very difficult to maintain a household on a single income. So those domestic circumstances can break down very quickly within 12 months.

When we look at the availability of cheap, accessible accommodation, there is none! Anyone in a wheelchair or assisted mobility technology, it’s hard to find accommodation. There is also discrimination against women with disabilities, and women with disabilities with children. Anglicare do a snapshot survey every year of affordable rental property. In 2016 or 2017 the survey showed that there was one affordable, accessible property for someone on a welfare payment! Housing is a huge barrier to leaving a violent relationship, especially for women with disabilities.

On recognition and being ‘inspirational’

In 2017 I was recognised with the Lesley Hall leadership award. Lesley was someone I didn’t know personally, but who I always admired, especially for her stance as a feminist. She was a great leader in the NDIS space as well. And I’m really proud of that award. It is an award in the disability space and it is recognition of my years of leadership, of the longevity of what I’ve been doing. It is recognition by my peers.

I was recognised in 2015 as the ACT Citizen of the year and it was a wonderful accolade. A lot of people noticed it , and as far as being a token of something, that was really an excellent honour to get. And in 2014 I was ACT Senior Woman of the year which was also mainstream recognition. In 2015 I was nominated as Senior Australian of the year in the ACT cohort. They were all mainstream recognitions, which was very important.

Being a member of the University of Canberra Council (2012 to 2018) did make a certain statement about inclusiveness.. In general, universities do need to be more pro-active in the disability space, using positive discrimination to recruit lecturers with disabilities across different fields of study. That proactive recruiting is important. Visibility in the professions is important. Now with Commonwealth changes in the disability space that have pruned back university funding, it is hard to see how they are going to be innovative.

If you think about it, Ron McCallum was Dean of Law at the University of Sydney. He admits to having had a “quo vadis” moment when he understood what underprivileged, impoverished people with disabilities were experiencing. He was already on the UN Convention Committee where he met others with disability. He has been able to ride the wave of technology because he had a family of privilege and an education of privilege. But he went through his life into adulthood before he met people for whom their disability made life a struggle. Graham Innes is the same. So that is why I call us silver-spooners. We had a life of privilege and disability was incidental.

The ‘triumph’ of survival is a polarising question. Our wonderful advocate, Stella Young (deceased), coined the phrase ‘inspiration porn’. We are not there for the inspiration of the able-bodied. But by the same token, not enough recognition is given to the fact that we are doing 120% all the time and we are doing it bloody well. Where is the space for us to be recognised for being fantastic for living, when we are facing more challenges?

We need to be acknowledged for the capacity to lead, and our capacity to be there. Our achievements are fantastic! Women in the workforce, women getting their degrees, women doing anything, including winning on the track.

Stella’s use of the phrase inspiration porn makes it difficult for people to admire us. We need that space to be recognised, for women with intellectual disabilities as well. We don’t want to be inspirational in the way that people can look at us and think ‘I’m so glad I’m not you’. But we need recognition, we need people to see us - we are tall and proud and we are doing things and we achieve.

Sue Salthouse was interviewed by Dr Nikki Henningham on 14 February 2018 for the Redefining Leadership project.