We hope this review will provide an arena where the insights and wisdom of peoples’ lived experience can be shared, where injustice and disabling social structures and attitudes can be highlighted and challenged, where achievements can be celebrated, and where change-making conversations might begin!
AUTUMN 2022 EDITION
ISSN 2209-3192
COVER ART BY SHANE WHYTE
CANBERRA DISABILITY REVIEW STAFF Editor: Rob Donnelly Assistant Editor & Researcher: Akiko Hirata PHOTOGRAPHY Rob Donnelly and Akiko Hirata Photo of Minister Davidson provided by her office “I am a local artist with lived mental health experience. I've created many oil and watercolour paintings of various sizes and styles of art, and have just begun discovering cartooning and illustration art. This has allowed me to express my social and community comment through art, as illustrated in the Advocacy For Inclusion piece. This illustration depicts iconic areas of Civic and the contrasts of community backgrounds, focusing on the marginalised and disadvantaged.”
EDITORIAL Welcome to the Canberra Disability Review. We are setting out on this online venture mindful of the history of this publication. The first Canberra Disability Review was published by PWDACT from 2016 to 2018 with Craig Wallace as Editor and Robert Altamore as Publisher. That team set a high benchmark in creating a top-quality publication that provided original writing and an arena for voices on disability. We are grateful for their fine work and take their core aims to heart as we begin this new and exciting chapter. It's appropriate that the re-launch of the Canberra Disability Review is occurring in these interesting times. It is too frequently the case that diverse voices are drowned-out, and inclusive values set aside, when circumstances appear to be overwhelming. As a nation we still struggle to fully grasp the fact that the respect and support of the human rights of all people is not a matter of charity. It is intrinsic to the nature of a truly just and human society.
We too often fail to recognise that talk of a fair-go for all is only genuine where issues of disadvantage are fully recognized and effectively addressed. There is no fair-go for all where having disability means there’s a greater likelihood of experiencing violence and abuse, being unemployed, being treated as a lesser priority in times of emergency, being allocated to the too-hard basket and denied opportunities to learn and work and experience belonging. We hope this review will provide an arena where the insights and wisdom of peoples’ lived experience can be shared, where injustice and disabling social structures and attitudes can be highlighted and challenged, where achievements can be celebrated, and where change- making conversations might begin. It’s a tall order. The ultimate success of this venture will not be measured by the size of our readership but by the changed thinking and better-informed decisions that are sparked when readers encounter the experiences that are shared here.
Rob Donnelly Editor Canberra Disability Review
QUESTIONS FOR EMMA DAVIDSON ACT MINISTER FOR DISABILITY
QUESTIONS FOR EMMA DAVIDSON ACT MINISTER FOR DISABILITY
Question: The COVID-era has been a steep learning curve across the community and for all levels of government. What is your understanding of the impact that COVID has had on the community of Canberrans with disability and how has that shaped your sense of policy priorities as we hopefully move towards a post- Covid era? Answer: The Canberra community has rallied together over the past few years to find new ways to provide support, maintain connection and adapt quickly to change. The pandemic and natural disasters have been challenging but provide an opportunity to reimagine how we operate as a society and be more flexible and inclusive to people’s needs. The disability community and sector have faced challenges from risk of severe disease, workforce shortages, access to personal protective equipment, testing and vaccinations to social isolation. All while fiercely advocating against NDIS changes that limit people’s choice, control, and continuity of care.
The ACT Disability Strategy is an opportunity for genuine co- design, to use what we have learned from these challenges to create a more equitable, connected, and accessible Canberra. People with disability, their families, carers and the sector have been adaptive, flexible, and creative to solve problems arising from climate change, the ongoing pandemic and economic disruption. I’m thrilled people with disability and the ACT Disability Reference Group will lead conversations under this co-design process. This is a fantastic opportunity to support people with disability take leadership positions across every aspect of community life, so Canberra becomes a more equitable, connected and inclusive place.
Question: People with disability are disproportionately represented among those engaging with the justice system, both as victims of crime and among those accused of crime. What key areas need to be targeted by the ACT Government in order to reduce that disproportionate representation? Answer: Canberrans deserve to access supports that minimises harmful behaviours, keep them connected with their communities, and meet their needs. For a more equitable and fair justice system, the ACT Government launched the Disability Justice Strategy and First Action Plan in 2019. ACT Corrective Services have also developed a Disability Action and Inclusion Plan to make their service more inclusive over the next three years. The Strategy will improve education, guidance and fairness for people engaging with the justice system. This work ensures people with disability receive the support they need to have more equitable outcomes throughout the justice system. There are now more Disability Liaison Officers in justice agencies to support the needs of people with disability, staff across the justice system have participated in training to develop accessible information and improved screening tools are being implemented to better identify and support people’s needs.
As the Attorney-General Shane Rattenbury introduces legislation to raise the age of criminality, I will focus on how ACT Government can support young people with disability and their families who are at-risk of engaging in harmful behaviours. By providing the right support, they will have more access and opportunities to grow happy, healthy, and proud. Question: How much importance do you place on the increased inclusion of children with disability in our mainstream education system in the ACT? What do you see as the major obstacles in progressing that inclusivity? Answer: Inclusive education means better academic, social and wellbeing outcomes for all students – where everyone has equitable opportunities to explore and pursue their interests. Laying the foundation for inclusion reform will take time as it requires a cultural change that celebrates and welcomes diversity across ACT schools. This includes building the capability of schools to appropriately assess, communicate, plan for and meet the needs of students so they can thrive.
This work must involve people with disability and their families. They know what is needed in our schools so students can be properly supported and have a stronger connection with their school and peers, more pride in their education and empowered to pursue their interests. A Community Conversation survey was open to hear directly from students with disability, their families, carers and interested community to have a say in how ACT schools can be more inclusive and accessible for people with disability. The feedback from the survey is part of the development process of the Inclusive Education Strategy. Question: We have seen a number of concerns raised over the past 12 months concerning the NDIS. These concerns have included the impact of funding cuts to individual plans, difficulties in negotiating the system, and delays in processing applications. How do you see your role in the ongoing work of negotiating a better NDIS system for Canberrans with disability? Answer: Canberrans with disability want a National Disability Insurance Scheme that supports their choice, control and continuity of care. This includes genuine co- design, appropriately funded plans, an open and transparent Scheme and, importantly, for everyone to have access to the support they need to live with dignity and pride.
In the Disability Reform Ministers’ Meetings, I continue to amplify the voices of the community, raise the concerns and priorities of Canberrans with disability in national conversations and hold the National Disability Insurance Agency and Commonwealth Government accountable. The ongoing advice, feedback and advocacy of the ACT Disability Reference Group, community sector advocacy organisations and people with disability ensures I can represent and better support their interests and needs. Your voices highlight across governments and ensure the Scheme lives up to the promise of genuine choice, control and continuity. So more Canberrans with disability can have their voices heard, additional funding for Advocacy for Inclusion and ADACAS was delivered under the 2021-22 ACT Budget. Additionally, the ACT Government’s Integrated Service Response Program engages people with disability, particularly those who are not on the NDIS, and service providers with the NDIA so they can receive the right support for their needs.
Question: The expression “nothing about us without us” is often used among people with disability. What significance does that expression have for you in the business of formulating and responding to policy and funding priorities? Answer: “Nothing about us without us” is self - determination – for any conversation impacting the lives of people with disability to genuinely involve people with disability, including at a national level. It is basis for the ACT Government’s commitment to the human rights of people with disability and importantly, trusting their voice to inform our policies and initiatives. People with disability must inform what is needed if we are to drive equity, inclusion and accessibility across our community. In the ACT we are so fortunate to have the Disability Reference Group who highlight the issues that people with disability face and how ACT Government can address these needs. Their work advises how the ACT can become a more inclusive community and provide lived experience voices in decision-making. They play an instrumental role in holding the ACT Government accountable in the implementation of the Disability Strategy.
The ACT Disability Reference Group has co-designed the Disability Strategy’s consultation process to ensure there are more inclusive and accessible opportunities for people to get involved and have their voices heard. This includes public forums, surveys and kitchen table conversations so people you know and trust can get together to chat about what is important and share ideas .
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EDITOR’S NOTE
We invited James Milligan MLA, ACT Shadow Minister for Disability, to contribute his answers to these questions. Mr Milligan declined the offer on this occasion. We look forward to the opportunity to hear from Mr Milligan in a future edition of the Canberra Disability Review.
EMPOWERING OUR VOICE; ASSERTING OUR RIGHTS
BY ROSLYN EMMERICK
Strong voices, suppressed Spoken over and ignored Taking away choice
When our voice is taken from us, or not given the safety and freedom to be heard, we are diminished, constrained, restrained. To be clear, I define ‘voice’ as our means of communication – be it verbal or non-verbal. Taking this away from someone is at the very least, disabling; at its worst, criminal.
In my position as an Individual Advocate for the Disability Royal Commission, my role is to support people to share their experiences of violence, abuse, neglect or exploitation with the Royal Commission. I am trusted and entrusted with people’s stories, providing a safe space in which to share their experiences, with both myself and in turn the Royal Commission. Experiences that for some people have been recent, for some buried in the past, and for others lifelong. The link that is shared with all stories is the experience that people have been hurt – by individuals, trusted services or systemically – and are compelled to either continuously fight to uphold their rights and justify their needs or remain unheard.
We deserve your time And respect. We are worthy Of being seen, heard We all have the right to be heard, however there are barriers to sharing stories with the Royal Commission. Some of these barriers have been placed on us by external factors. Fear of retribution may have seen the ACT community hesitate in coming forward to share their experiences, together with uncertainty around confidentiality of their stories. Thankfully the privacy issue has been resolved recently, with legislation passed by parliament to protect confidential information provided to a Royal Commission. This means that any person who shares confidential information with the Disability Royal Commission will have their privacy protected, even after the Royal Commission ends. This legislation will make it safer for people to share their stories.
While Covid-19 certainly presents challenges to the way we all live and work, I am pleased the work of the Royal Commission continues, highlighting the adaptability and resilience of people with disability to get things done. That being said, I am looking forward with renewed optimism to community engagement opportunities in 2022 to expand awareness of the Royal Commission.
However, there are other barriers to sharing stories with the Royal Commission that are more personal.
We are so tired Sharing our experience Again and again
How many times have you needed to explain your story to individuals, service providers, government agencies…? For me personally, I cannot even guess at the number of times I have needed to explain or justify myself, sometimes on an hourly, daily or weekly basis...
It is exhausting!
When our story relates to an experience where we have been hurt, abused, neglected or exploited this understandably makes it harder to convey. Particularly when this experience has been shared with nothing positive happening. The question then arises of ‘why bother’ to tell my story to the Royal Commission? This is a common obstacle for people to engage with the Royal Commission. I describe it as ‘telling my story fatigue’. For those who have chosen to tell their story to the Royal Commission, their reasons are many. Commonly, it is to have their voice heard and recognised; to share their experiences of violence, abuse, neglect or exploitation so they may not happen again to others. Many are motivated to encourage positive change – perhaps at an individual, community or societal level – to remove barriers and create understanding.
Above all, those who chose to tell their story to the Royal Commission have felt empowered and validated. Sharing their stories and shining a light on their experiences, knowing that these will inform and shape the work of the Royal Commission is transformative.
Disability What society sees; not My ability
Change is slow; incremental. I see it as ripples. My hope for the Royal Commission is that all people in the ACT will have the opportunity to engage with it to have their voice heard to make our community safer and fairer for all people with disability.
This is who I am See me for all that I am And who I will be
Roslyn Emmerick is Advocacy for Inclusion’s Individual Advocate for the Disability Royal Commission. Roslyn continues to support people in the ACT to share their stories with the Disability Royal Commission. If you want to know more about the Royal Commission and sharing your experience, or if you would like assistance to share your story, contact AFI on 6257 4005 or info@advocacyforinclusion.org.
AKIKO’S JOURNEY AT ANU BY AKIKO HIRATA
PHOTOS IN THIS ARTICLE BY AKIKO HIRATA
INTRODUCTION I arrived in Australia, three years ago, to study at the Australian National University (ANU). My student life was filled with excitement, joy, and challenges. I encountered lots of challenges throughout my journey at the ANU. There were some that I was not able to fully overcome. Sometimes, these challenges made me feel that I’d not be able to complete my degree. However, thanks to the support from various people, I managed to complete it last July. At the ANU, I not only made lots of precious friends and memories, but also found my role models, learned the importance of empathy, diversity, support, and inclusivity, and acquired passion to advocate for disability rights, inclusivity and accessibility. This is my reflection on my journey at the ANU as an international student with autism.
1st SEMESTER 2019: BUILDING DISABILITY CONFIDENCE I was diagnosed with autism when I was a primary school student, but I did not know that I was autistic until my first official written diagnosis was issued at the age of 17. Even after getting an official diagnosis, my parents, teachers, and support people recommended that I not disclose my autism to other people. I never talked about my autism, my challenges, or needs by myself. This changed when I had my initial meeting with Access and Inclusion (A&I) during the Orientation Week for Semester 1 2019.
Access and Inclusion (A&I) supports ANU students with disabilities so that their disabilities would not impact their study at the ANU. Students who want to register with A&I will submit a registration form with notes from their medical practitioner on their disabilities, and then the students will have a private consultation with their advisor. The students successfully registered with A&I obtain their Education Access Plan (EAP), which lists recommendations for reasonable adjustments for them. Also, A&I gives advice for the registered students with disabilities and their course convenors on reasonable adjustments and other support available on campus where necessary .
At the beginning of this meeting, my adviser asked me: “Could you please explain about your disability, challenges, and what support you need in your own words?” I had no idea how to explain my autism. I do not remember what I said, but I do remember I felt “I’ve finally gained the liberty to talk about my disability by myself!” It was always a bit challenging to talk about my disability with my lecturers and classmates in the first semester. By the end of the semester, I gradually gained confidence in disclosing my disability and requesting adjustments; all of my lecturers and classmates in my first semester were very supportive and understanding. When I disclosed my autism or challenges, they listened to me and accepted me. I even felt that, with reasonable adjustments, I would be able to be successful at uni and my future workplaces. “I’ve finally gained the liberty to talk about my disability by myself!”
2nd SEMESTER 2019: LOSS OF CONFIDENCE
My gradually gained disability confidence was unfortunately smashed in my second semester. One of my lecturers in this semester kept declining my adjustment requests as she did not understand or trust my Education Access Plan (EAP). She insisted I should learn not to rely on adjustments because I did not look like I had disability. By the end of this semester, my visual hypersensitivity became extremely severe due to my stress, which I felt was the end of my life.
I had been a bit sensitive to bright lights. I usually got “sensory overload”, such as nausea and migraine (like travel sickness!), when I am exposed to bright screens or light for a prolonged time, but this did not impact my everyday life so much. However, due to the deterioration in my sensitivity, I became unable to look at any digital screens, including my phone and laptop, without taking frequent long breaks, even though I turned my screens as dim as possible. I also found it hard to go shopping, including grocery shopping, because the ceiling lights, fridges and freezers were too bright for me. I often wondered what abilities I still had and what jobs I would be able to do after graduation with my very limited ability.
Accepting my “new normal” was hard, but gradually, I started accepting the fact that I was different from neurotypical people and that reasonable adjustments are crucial for me to survive. My lecturer thought that I was requesting an extension for my essay submission and lecture slides ahead of classes because I was lazy. When she said I should not rely on support, I got the impression that I should have pushed myself harder to be like other students who did not require any support. However, I learned that the lack of these adjustments unfairly disadvantaged me. I had needed these adjustments to prevent deterioration of my conditions and to maintain my quality of life. I also gradually found that my friends and other lecturers were more supportive and understanding than I had thought. I developed great friendships with my classmates who kindly offered me support while I was struggling with my new challenges. It was a bit frustrating at first, but I gradually got used to explaining about my challenges and support needs in my words. .. the lack of these adjustments unfairly disadvantaged me.
1st SEMESTER 2020: FINDING A ROLE MODEL
I deeply learned the importance of empathy in my third semester. Unfortunately, I had to take that hard lecturer’s course again; however, this time, I was fortunate to take my favourite lecturer’s course at the same time. It was my second time to take this lovely lecturer’s course. She is always empathetic, very understanding, and a good mentor who always cares about maximizing her students’ learning experiences. When I requested adjustments and support in her class, she always not only accepted my request but also showed her great empathy and told me that she was always happy to support me so that I would not be unnecessarily stressed or disadvantaged in her course. Her empathy always relieved my stress considerably. She is now my role model, and one of my life goals is to learn to be as empathetic as her.
SEMESTER 2 2020: BREAK FROM DISCRIMINATION I do not remember much about my 4th semester, to be honest. It was my recovery time from the prolonged stress and trauma from the hard lecturer. This semester, I started my research project to write my Master’s sub - thesis. I was very lucky to have my favourite lecturer as my thesis course convenor and very flexible and sympathetic thesis supervisor. At the end of this semester, however, I received a sad news that the hard lecturer was going to convene my degree in 2021, which I assumed to mean she was going to convene my thesis course.
1st SEMESTER 2021: NEXT STEP
So many things happened before my fifth semester began. One piece of great news for this semester was, although the hard lecturer was my program convenor, she did not convene my thesis course. This meant that I was able to receive necessary support in my thesis course from my supervisor and thesis course convenor. Another precious experience in this semester was that I became the PARSA Disabilities Officer, whose main tasks were to support postgraduate students with disability.
Through my role, I found that, unfortunately, I was not the only student experiencing discrimination from course convenors at the ANU. Though, until then, I was not so willing to share my experience with discrimination on campus or to advocate for disability rights, I gradually started sharing my experiences with other students and university media. I found that by disclosing my experiences, other people with similar experiences become more comfortable with talking about their concerns and/or experiences with discrimination. It was sometimes a hard task to recall my traumatic experiences, but it always helped me gradually heal from my trauma.
Photo of Akiko
CONCLUSION It was an unfortunate experience to have that hard lecturer. Her refusal to make reasonable adjustments led to the deterioration in my visual hypersensitivity. Even though I have gotten out of the worst conditions, I still struggle with reading on screens, watching TVs and using digital devices after sunset, and going to bright places, including supermarkets. If I could go back to Semester 2 2019, I would certainly work hard to avoid it. However, it is also true that my experiences at the ANU shaped who I am today and led to my work at AFI. I also sincerely appreciate the support, kindness, and empathy of my supportive lecturers and friends. I am now very proud of my experience with their empathy and of having a great role model. My home country does not appreciate diversity, so until I came to Australia, I was always ashamed of being different from the majority. In Australia, however, I learned that diversity and inclusivity makes society more accessible, convenient, and comfortable. It is my hope that through CDR, I can assist with raising people’s voices, building a safe community, and that more people with disability can find their ways to get through their challenges like I did at the ANU.
We conducted an online interview of current ANU students with disabilities. We wanted to find out what challenges they have faced on campus. We also asked them about their experiences with barriers in the ACT, in general, and their suggestions about improving accessibility and inclusivity in the territory. We thank the students who kindly shared their experiences. They have highlighted the day-to-day realities of systemic disadvantage, the challenges of the COVID era, the positive significance of effective support and reasonable adjustments, and the often socially
isolated journey through challenging and, at times, alienating environments.
The following are some of their responses.
Did you encounter any barriers or challenges in transition to ANU? If you feel comfortable, could you please share a bit more about the barriers you have faced at ANU?
“Due to the current state of social isolation, caused by Covid19, lectures are mainly online, while some lectures are held in a large hall with lecturers wearing a mask to allow a large number of cohorts to listen to the lecture at once. Online learning has caused difficulty in hearing the voice coherently, while the offline lecture has resulted in a large echo of the noise, making it difficult to understand the word spoken by the lecturer. Furthermore, masks being worn by the lecturers have made it difficult to comprehend the speech further, due to the usage of lip reading that has been used to assist with hearing comprehension issues, resulting in further inconvenience in understanding the lecture contents.” Anonymous Student
“The ANU were very aware and I felt very welcomed by them when I first joined the community. The biggest barrier I faced was the scheduling of an Access and Inclusion (A&I) appointment. It took them over a week to respond, and then the meeting was scheduled for a further two weeks away. I do not blame them for the time it took them to get back to me as I know they are very busy helping many people. But it did leave me feeling very vulnerable whilst waiting for my meeting.” Mackenzie “I have found that some lecturers are very inclusive and encourage all students to consider adjustments and access needs regardless of individual students having an EAP. However I have also encountered lecturers who only consider accessibility needs when prompted and even then needed constant reminding or they didn't follow through.” Henry
“I was thrown out of university three times. Perhaps there were support structures, but without knowing how to find them, or how to advocate for myself, I experienced zero support. I was even asked to leave when I tried talking to a councillor. I still don't know if it was trauma or mental conditions, but now, 15 years later, that I have some support for both of those things (including medication) I have a distinction average. There is a sense in which I will always feel as though my life was ruined. I was homeless for a while, and now I still am a bit of an outcast from society. Many people who naturally fit into university, or systems of power generally, will never be remotely understanding. The hardest thing to try and learn is that they were wrong, and try to be understanding towards myself.
Clearly I’m more capable today then when I was first thrown out of ANU, but there are systemically distinct improvements at ANU itself. But university is still a strange alien system, and the people who feel comfortable in it, and profiting from that system, should never forget that. The “being thrown out” was completely brutal. Just a letter asking me to “show cause”. I still today don’t know what they wanted. I hope today that there’s systems in place to reach out to failing students (if not: give me a job! pls.).”
Anonymous Student
“I first realised that my grades were suffering in my first year at ANU. I attributed it to the change of environment that university life brought. I was put on academic probation in my second year because I’d failed so many courses (technically during my first year, but I neglected checking my email for a few months). That was when I started looking for a way out. I've got a delightful combination of ADHD and Dyslexia, which makes reading any amount of dry text laborious. ANU also has several layers of obfuscation to any direct link to help, which I hope isn’t malicious but ignorant design. So when O-week came around and I started looking; I couldn’t find anything. I didn’t know what words to google, what departments there were. Nothing. So I gave up.
Fast forward to the mid- semester break and my grades are still awful. I considered dropping out, but I started asking questions. I don’t remember how but by some miracle I got in contact with Access and Inclusion (A&I). I remember complaining during my first interview with them how hard it was to find. I’d almost missed the building because of bad signposting, and the aforementioned digital camouflage. My advisor then showed me how I was “supposed” to find them and how “easy” it was. Three successive pages of the driest “helpful” text I’ve ever seen. I was furious. Months of doubt and anxiety. All because someone didn't know how boring they sounded.”
Angus
How inclusive and accessible is Canberra in your experience? What do you hope the ACT government will do to make it more accessible and inclusive?
“I think it's quite accessible, but need more action on inclusion. I found Access Canberra can be quite overwhelming, a pre- booked quiet hour would be nice.” Alan “It's difficult to state the assistance and inclusiveness that can be provided by the government, as this has been a condition that I had since birth, which resulted in this situation surrounding myself to be of the norm (to try to understand information from fragments of words spoken by others or to search online regarding topics that I could not hear or understand). As such, it is difficult to suggest what will make my life more accessible and inclusive, since this is the norm for me.” Anonymous Student “There is very little financial help for the people with mental health issues. Most live in shocking conditions and many others end up in a street as homeless. The ACT government is generally interested in stopping the suicide, acting in reactionary manner, caring about the statistics. The long term help, including financial help, is conveniently forgotten in any discussions. Many mental health issues could have been prevented if the ACT government changed its policy and truly and honestly helped.” Lucas
“It's very hard to know what systems are out there, and how to access them. One thing I would like improved is legal access. There is simply no justice unless you can hire a lawyer. I thought part of being a citizen was to have access to the legal system, but if you can not hire a lawyer then you get no access.” Anonymous Student “I've never considered myself to be "disabled", because my disabilities aren't physical. I supposed by inference of that statement, I've always seen Canberra as accessible. Sure, some road markings are a bit confusing and the endless construction and roadworks don't help but that happens everywhere. The only problem I've really encountered, in my day-to-day, is not finding a parking spot. I think I've been very lucky in that respect”
Angus
WOULD YOU LIKE TO CONTRIBUTE TO THE CANBERRA DISABILITY REVIEW? The Canberra Disability Review aims to deliver a quarterly online magazine that reflects the experiences, perspectives, policy impacts, and concerns of people with disability in the Canberra Region. We are particularly committed to including the experiences and perspectives of people with lived experience of disability. We are interested to hear if you have an idea that you might like to contribute to the review. It might be a written article, a poem, a series of photos or a piece of art.
Please drop us an email with a short description of your idea to:
cdr@advocacyforinclusion.org
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