Rai’s story is one of invisible disability, the need for increased awareness and recognition of the needs of women with disability. We discuss improving systems, but also the ways that some workers within systems are providing the care needed. Her story highlights the adaptability of women with disability and their often-beautiful ways of coping. Rai is a woman in her thirties. Born in a colonial metropolitan city in South East Asia, she moved to Australia at the age of 20. She is working with vulnerable people to help them access the support they need to succeed in life, she explains. Her and her husband live on a small property they own in suburban NSW, where they have ‘too many animals’. As we speak, said animals are attempting to join the conversation. Our interactions before the interview were brief, but as we get to talking, each getting a sense of the other, Rai offers windows into different parts of her life. I meet with her a few times over the life of the project, both individually and as a group, each time via video chat. Information from these meetings as well as the interview inform this narrative. When I ask participants in the project what their experience of disability is like, it is usually leads, sooner or later, to a disclosure of a medical diagnosis, or several. The question is phrased to be open enough so participants can choose how to represent themselves and this nebulous experience come thing we call disability. However, more often than not their responses include the medical perspective. When I ask Rai, her answer resists categorisation. She tells me her experience is ‘not recognised and it [has] created a lot of, um, a lot of trauma and difficult experience’. She goes on to describe the functional impacts of this, not so much on her life now but earlier in childhood. Her response and my reaction, in which I noted this variation, make visible to me how ingrained the medical model has become in how we understand disability, that is, usually through diagnosis. Rai talks about a time before she was aware of the difficulties she faced in relation to other people. She describes feeling confused and being unable to understand what was happening around her a lot of the time. Others would comment on how she was careless, lazy, or stupid. She made mistakes, was not able to stay awake or sleep at the right times, in the right places. Somes days, Rai considers her feelings are out of control. Feel helpless. ‘…when I was younger it, it was a lot harder when I wasn't aware of the difficulties that I had. Um, so didn't have the structure that I need to succeed or had the awareness of other people would be a difference for me… I didn't understand um other, others intention so that could make the situations quite dangerous for myself.’ The experience of disability also impacts Rai’s energy levels and mood. She experiences big shifts in moods from one day to the next. She shows me a mood tracker she users to track changes over time. The brighter the colours, like yellow and green, the happier and more joyful she feels, Rai explains. When things are slower and she’s feeling down, it shows up purple and shades of blue. Perhaps it is a type of structure where there was none. A way to have control of that which feels out of her control. For Rai, there is also complexity which arises from her experience of invisible disability. She notes that ‘there are a lot of stigma around mental health and people with disability and women in general’. She illustrates this through her photo, The hidden someone; ‘unless you are really looking for it, you wouldn’t know’. For a moment, I don’t know what I am looking for. Then I see it. ‘It takes a like a certain kind of [person]… They don't believe in things that they can't see or they can't experience themselves, so that makes it harder for them to be for those disabilities to be recognised. And then women. Also like historically, just the quieter and staying at home um bunch that won't be seen in important places.’
To cope with this churning, everchanging experience of herself and feeling misunderstood by others at times, Rai has developed a suite of ways to get by. One of these is spending time in nature; as much as she can. This is reflected in her image choices. One photo, Sundew, was taken on one of her walks through nature. At the side of the track is a clear puddle, long-spiked grasses, mosses, eucalyptus bark and leaf litter. Greens and browns, it is a bird-eye view of the microcosm below. Pancaked, sticky, carnivorous plants bloom out of the bank. They may look insignificant, Rai explains, but they are an important part of the ecosystem. They are ‘quite beautiful, as well, even though they look a bit weird’. Slowing down the pace of life, to walk amongst nature and notice small parts of it – ‘having other true time away’ – is a simple pleasure for Rai and she thinks this could help others, too. This resonates as it has also helped me immensely. She also considers time in nature a privilege, acknowledging many people do not have access to natural spaces. ‘I did not have access to nature. Yeah, growing up, so I had to. Take a lot of actions for myself to be able to. Um. Get you where I am and able to have access to these things. Yeah so growing up, [we] didn't really have access to those spaces… [I] was born in Hong Kong and grew up in Hong Kong. OK, yeah, in a very big apartment. And absolutely no nature. And that is why I'm not in Hong Kong anymore.’ These experiences, being mindful and present in nature, grow Rai’s world which was once made smaller by the actions of others, partners, family members and family friends. While Rai does not share details of the historical abuse that happened to her, she focuses rather on the responses she received once she felt ready to report her experiences to police. I use the term historical abuse, as stated by Rai. However, it is noted current terminology is moving away from the use of ‘historical’ abuse in acknowledgement of the on-going impacts of abuse which may have occurred years or decades previous. Rai describes an overall positive experience of interactions with the police. When she first attended the station, Rai was greeted by a female officer who asked if she needed a support person with her during their meeting. The officer she would need to ask Rai some difficult questions; both difficult to ask and to answer. Rai was able to write a narrative account of her experiences in her own time. Police also explained that, due to the length of time between the abuse being perpetrated and reported, the likelihood of it leading to a conviction was low. Rai had anticipated this, noting she could not recall some details of the abuse required by police. In this way, reporting abuse many years after it was perpetrated made it more difficult for evidence to be gathered, but Rai also notes it was easier in way. It was less ‘emotionally charged’ as she could report in her own time and by then felt ready to speak to police. Rai did not hear back for some months, due to the Christmas holiday period. The officer who did get in touch apologised for the wait, however, noted that the agency would not pursue a conviction due to a lack of evidence.
While Rai is positive about her experience with police, she suggests improvements which would have made her feel more supported at the time. This includes being linked in with support services at the time of reporting. She notes victim’s services remain separated from the police and we talk about how they might work together more closely to reduce risks for women reporting violence. So, what does Rai make of her experiences? Well, life is not predictable for one. She offers the analogy of having a new car which is seemly functioning fine, then a piece falls off. ‘The thing is that life is not predictable. So, it doesn’t matter how good the car was or didn’t even have an accident, it just found out it could just be just a loose screw or things just aren’t working perfectly together all the time.’ Her message echoes that of Jane, encouraging the reader to be realistic, and plan for a miracle. She gives a sense of the experience of women with disability: hoping for the best but expecting the worst. ‘If you have like support in place already, so if you have roadside assistance ready and things like that, if you're prepared then it won't be so bad. If you're not… it makes the situation a lot harder.’ When the worst does happen, Rai is grateful to have people in her corner who support her through hardship. She acknowledges how much harder life’s challenges would be without them.
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