Born in Thailand, Sam, 31, was adopted as a child and lived in New Zealand and France, before moving to Australia. She lives at the family home with her parents in inner-city Victoria along with her rescue cat. ‘I just got her in December. She's five years old. She’s actually a gorgeous cat. She's getting much more confident, but I think she was abused to herself in her old life.’ She graduated from TAFE with a Certificate of Cyber Security and is keen to gain employment in the area. She is currently working four hours per week at a café. It is a social enterprise but Sam notes the business model is exploitative. Sam has a layered experience of disability, coloured by neurodiversity, and which interacts with her experience of culture and gender. She was born with severe sensorineural hearing loss; however, it would be two and a half years until she received hearing aids. Sam notes some countries at the time (like France and New Zealand) did not have mandatory hearing screening like they do for babies born today. This led to a language delay. While medical providers advised her parents she would never communicate verbally, she now speaks multiple languages. Her first language was French, but she also uses English and Auslan to communicate. ‘…what's the funniest thing is that uh, English is actually my third or fourth, my fourth preferred language sort of thing because you know, if I stayed in Thailand, [I] would have been speaking Thai and then we lived in France and we started speaking French, then sign language, sort of thing.’ She was later diagnosed with Asperger’s syndrome at the age of 18. When Sam was growing up, there was less awareness among medical practitioners of autism in girls and women: ‘They thought it was just trouble’. After completing a training to better understand autistic behaviour, Sam’s teachers in the high school deaf unit suggested Sam may be screened for autism. This led to her being assessed a few weeks later and receiving an autism diagnosis.
Early in the interview, I get a sense that Sam is adept at plain-speaking, and she is unafraid to name things as she seems them. She notes that her adoptive parents did not have enough information about her needs – and ‘how [she] would turn out’ – prior to adoption. She goes on to describe some of the subtle and not-so-subtle ways that a lack of awareness and willingness to acknowledge her experience of disability and commensurate needs have impacted her upbringing. One such manifestation is the denial of the experience of disability. ‘[My dad] doesn't believe that I have, I'm Asperger's… he knows that I have hearing loss because that's a physical thing, but I think [because Asperger’s] it's a mental sort of thing. He doesn't really understand about those things because every person has obviously personality [differences].’ The denial and minimisation of Sam’s experience of disability had limiting impacts on her sense of self and communication. She has experienced name calling by her father. Sam also describes behaviours which limit her choice and control, including not being consulted about big decisions such as the family moving overseas. She would have loved her parents to teach her sign language, however, she was only able to start learning Auslan at 16. However, even this was a struggle to begin learning in the first place. A teacher in the deaf unit at her high school refused to let her do the extracurricular Auslan course as they thought she might not be able to keep up with the content. This forced Sam to study Auslan at TAFE. Sam felt it should have been her choice as a disabled woman, and compares this to limiting access to culture or language for Indigenous people, and therefore, limiting access to community. ‘…this was an unfair turn because as a person who has a hearing loss all her life should have the option of learning Auslan to communicate with deaf and have a community of some sort. It is not easy to just fit into the hearing or the deaf world, but rather hearing impaired describes me better. I think even if I am into the hearing impaired category, I should've been able to do bilingual from a young age still which I wasn't taught from my parents but instead had to go to TAFE to learn Auslan because of my exclusion from this teacher even though it was such a small class.’ Sam has also experienced exclusion and bullying at high school. She was sexually assaulted by another female student at the school. ‘I can just say that she was expelled, which was good. But the thing I just wanted to leave this school because everything is so upset and there wasn't any other school for me.’ As a result of her experiences, Sam did not enjoy or feel included at her school. She notes she did not feel supported, as there were around 3000 students at the school. While the school responded to the incident, it left Sam feeling scared and isolated. Even years later, Sam notes feeling fear when she ran into the former student in public. The experience compounded the discomfort Sam feels in public spaces. ‘Definitely pressure. The emotional social pressure does not ready to see anybody really.’
As we look at the photo, Up in the Clouds, where Sam is in a public space: ‘…one of those places in public and it's just somewhere that still you can feel safe but you but mentally inside, it can be difficult… I think it just represents a little bit of difficulty in my own life’. We talk through feelings of uncertainty and social pressure. Sam is articulating a feeling, or a cluster of feelings. It is possible we are getting to the core of it together, we a seeking a way forward. We are co-creating the meaning. She describes it: ‘I would say because, because I'm obviously not smiling there and I'm, I think it's clear in my eyes there that I'm thinking about something else… I’m just a little worried about some things’. It occurs to me that Sam may move through the world with feelings of discomfort and unease, and without having the words or platform to express exactly what those feelings are and how they come to be. In one of the photos Sam has brought, she explains she is preparing for a consulting job interview and is feeling very nervous. ‘I’m just over it because you know, they’re not to act the best for people with disabilities.’ Not feeling ready to go out and see anyone, Sam has some apprehension about whether the interviewers will understand and respond to her needs. ‘The interview processes tend to have lots of questions, and, and they're not provided beforehand usually, and that makes it difficult... Unless you asked for it. So I think there's somethings they could do better.’ The place Sam is working now offers a pathway into employment for people with disability. They must first attend an eight-week voluntary training at the café, coming in once a week with an external support worker to learn the role. Sam was successful in this and gained one four-hour shift per week. However, once employed the organisation still require NDIS contributions from employees to pay for internal staff trainers and supervisors, all of whom do not experience disability. Like other participants, Sam has her Centrelink payments reduced if she works each fortnight. While she has highlighted her concerns to the business, nothing has been actioned. This feeling of disempowerment for Sam mirrors power and control exercised in family and domestic violence. ‘… it feels almost like domestic violence although it's not the right term but not treating people properly like this led me to depression, more self-advocacy awareness, not wanting to chat with colleagues at all. It's not burnout as in lots of hours but more like social burnout where it doesn't work for me.’ She notes that some organisations are starting to have an increased focus on inclusion. While things are getting better, Sam believes there is still quite a learning curve and not every company is ready to improve their practice. As Auslan is her preferred language, Sam would love to work at an organisation which supports this. She believes having options for inclusive schooling and work would allow children the choice to be bilingual. In her own life, having the choice to be bilingual has also provided a home in the deaf community. It is clear Sam’s experiences of exclusion and abuse continue to impact her sense of self and how comfortable she feels in the world. There are also things she does which also to help her heal and grow. This includes caring for pets, which Sam believes is a form of therapy. ‘I think for victims and survivors, you know, the pets are the best form of therapy because they are innocent animals, even more so than children. Um so I would say that to myself.’ Sam also believes that increasing inclusion in society is important for increasing the choice and control of people with disability. ‘It is important to me that every person has the right to, oh, have this day and do this thing. And even if the world tries to ignore it, they can't.’
%402x.svg){kind=icon}
