Tania joins me from her rural island home via video link. She has a calm demeanour, speaking clearly and thoughtfully. She has just arrived back from helping her aging parents apply to be assessed for funding through Australia’s aged care system, MyAged Care. Tania helps them with the paperwork; this is despite the constant exhaustion and having her own administrative tasks to manage her health and wellbeing. While her Eurasian cultural heritage is important to her personal and collective identity, she identifies as Australian. Like many women with disability, she is caring for others; ‘we're all doing it because that's how we've gotten through’. Living with multiple chronic illnesses has a dramatic impact on Tania’s everyday life as a woman in her forties, a daughter, a partner. She is also an advocate, activist, and creative - roles which go largely unpaid. Before her diagnosis with an autoimmune disease and multiple subsequent diagnoses, she could manage small customer service jobs. Tania speaks to me about the threads of disability which weave through her inner and outer worlds. ‘My disabilities inform what I can and can't do in life. So, how I socialise, if I can socialise and how I socialise. Oh, even who I socialise with, the kind of work I can and can't do. The sort of house that I need to live in. It has an impact on my financial situation. It has an impact on my physical comfort. So, my physical experiences, my emotional and psychological experiences, and my mental health. Yes. So I'd say it probably impacts every single aspect of my life that I can think of’. Tania is a deep thinker and she is thinking a few steps ahead, as she reads off notes she has prepared for the interview. She considers what is being asked, mulling over, and giving a considered response. The photos she has provided for the interview are an illustration of this; they are presented as a series. As an artist, she thinks in images and symbols. She wonders if she’s done it right and I assure her that it’s her story to tell, though I privately wonder if I have chosen the right process to capture all the insights participants are so generously sharing.

‘you’re not gonna be seeking justice if you can’t even have a roof over your head or feed your children, or you don’t know what’s gonna happen in three weeks’.

Photo series: housing, value, and control

The photos speak of domestic life, of shelter, necessity, safety, and control. They stir memories of Tania’s previous relationship with abusive husband and father of her two children, Dane. They conjure the unsafety of home, but also of the more mundane ways we fail to care for and value people. ‘They're supposed to keep us safe, being locks. The screw in the window is a thing that means you can open the window a bit, [and] it means people can't climb in. And they're all kind of filthy’. After experiencing housing stress, Tania describes her current social housing property, provided by an NGO, as a haven. She lives with her partner, who she describes as a brilliant, wonderful, supportive person. But the property is ill-maintained by the provider: ‘You can see where things have been forced. You can see where things have been put in place without much care… it's basic and it’s crude.’ She asks if, looking at the photos, you would think it makes her feel valued. No, I think to myself. Poor housing has been a constant throughout Tania’s life; it’s what has been available to her. She describes ‘terrible’ housing, where she lived with Dane and their children. It was her first relationship, a teen union consecrated in the church. They had children early. While Tania does not say which church specifically, religion surrounded family life. In that home, isolation permeated the everyday; feeling stuck, kept from friends and family, ‘breeding’, and ‘extremely controlled’. There, abuse was constant ‘in all the different ways’. As a charismatic, community man, Dane used systems to abuse Tania. Tania pauses, finding it difficult to share for fear of judgement. She describes an incident wherein Dane tried to take the children to an event: ‘I was really outraged because he didn't have anything to do with the children unless he could present himself as the perfect dad… he sort of jumped into his van and was like, I'm just taking the kids and fuck you’. Dane called the police after Tania attempted to use physical force to stop him from taking the children and she was identified as the perpetrator. ‘We don't look like perfect victims, so we can be framed or treated as perps because we're angry, inconsolable, defensive, emotional, needy, hysterical, not seeking justice. So, I didn't seek justice… I'm the abusive person, whereas he had been kicking me, punching me, controlling our finances, controlling everything. Gaslighting me. Humiliating me. For years’. Despite having the courage to disclose her experiences of abuse to the priest at their church, she was advised to turn the other cheek: ‘I was told to endure everything with as much meekness as possible, because that would bring humility to my partner… he would surely be humbled. But of course, he wasn’t humbled.’ This was an example of the power imbalances which characterised Tania’s relationships. Another was Dane’s public standing. Another, her age when entering the relationship. Tania left; her main priority to keep herself and her children alive. She left with no possessions or money, and nowhere to go. ‘He had all of his stuff. I didn't care a bit about any of that.’ They are still legally married, as Tania fears retributive action if she serves divorce papers. And besides, she does not have the resources to pursue legal processes which can be expensive and lengthy. Considering Dane’s standing and use of systems abuse, Tania felt there was no way she could have pursued a settlement or battled in court for the custody of her children: ‘I would never have dared go to court against him.’

Photoseries 1

Photoseries 2

Photoseries 3

The making of vulnerability

For Tania, leaving was not the fairytale ending we long for or expect as a society, the cessation of all suffering and hardship. In some ways, it marked the beginning of systemic disadvantage and personal struggle; in other ways, it was their continuation. Poverty endured and was compounded by leaving the family home, a lack of access to assets and inability to seek formal justice. Despite receiving her diagnosis after separating from her husband, she considers the on-going impacts of physical and emotional abuse on her health and wellbeing today. She is certain her experiences of violence and abuse have contributed to worsening function and the severity of her symptoms. She also draws parallels between her experience of vulnerability as a young mother and wife in a religious community, and the position of women with disability. ‘We’re susceptible to controlling partners who use systems abuse to make us more vulnerable and isolated. [He] used systems actively to make me more isolated and vulnerable and to make me feel like I was going mad.’ Isolation has continued although the circumstances are different now. Due to a compromised immune system, Tania is forced to stay home much of the time and prefers to meet with friends outdoors, though this is restricted by the chilling westerlies for which the area is infamous. While cold winter mornings are a fact of life in her area, Tania highlights that many of the barriers relating to disability faced in everyday life are avoidable, and the self-advocacy she has done to have her health needs met. She fought tooth and nail to have her housing provider approve the installation of insulation in the home. This was despite it being at no cost to them, covered by government incentives. The paperwork took significant time and effort due to Tania’s fatigue. ‘So, if you've got a condition like mine, you can be suffering very, very badly [from the cold]. I really had to fight a lot... I found out about government incentives that, whereby our housing provider could have insulation put in for free, the government will just pay for it, and I had to struggle and struggle and struggle to get them just to say yes to that when it would improve the value of their building. They wouldn't have to pay anything. It would improve the quality of my life dramatically.’ Tania has a heightened ability to recognise power after years with a partner who exerted control over her. She sees it within her relationships to services and authority. For her, asking permission from and self-advocating to service providers is reminiscent of the myriad ways she was undermined, minimised, and disempowered in her intimate relationship. ‘When I get triggered, I feel like sort of receding into myself. I feel like running away, but I also feel like sort of disappearing into the ground.’

Collective care

Caring for community remains a strong focus for Tania, as she relates her experiences to the plight of others who struggle for equitable access to housing, support, and justice responses. Despite having lived in poor housing throughout her life, she feels privileged to have social housing and considers how many thousands of Australians would be grateful to be offered an affordable home. At the time she left Dane, rent in her area was affordable. Tania notes you’d be hard pressed to find anything under $300 these days. The inaccessibility of housing has far reaching implications; ‘you’re not gonna be seeking justice if you can’t even have a roof over your head or feed your children, or you don’t know what’s gonna happen in three weeks’. ‘[Prime Minister] Anthony Albanese is continually banging on about how he grew up in social housing, as if it was the worst thing in the world. But, how many thousands of Australians now would be so grateful to be offered a home that was affordable?’ Tania highlights injustices stemming from the inaccessibility of mental health care and unaffordable medications. Gaps are often bridged by communities of women finding solidarity with one another. They are looking at the problems in the world, seeing the inaction of leaders and deciding to create change from the ground up. This community action Tania sees in organisations like tenancy unions. She sees it in neighbourhood community centres which leave the food out on tables for those who need it, so you don’t have to humiliate yourself to prove you’re poor enough. More than support without condition, Tania wants to see door opened for women with disability, so they are not locked out of opportunities. ‘So many doors are closed because of systematic stuff and because of our disabilities as well. And when people make an effort to make things [affordable], to make equitable access, it makes such a massive difference for me’.