Category Inclusive Futures: Reimagining Disability Show all
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ARMS: Strategies for Accessible and Inclusive Research Development Workshops
Dr Maretta Mann (Griffith University) and Dr Noni Creasey (University of Queensland) at the ARMS Annual Convention.Last week, Inclusive Futures team member Dr Maretta Mann, together with Dr Noni Creasey from the University of Queensland (UQ), presented “Disability Inclusive Research Management” at the Australasian Research Management Society (ARMS) annual convention in Darwin (#ARMS24).
The presentation gave an overview of disability in Australia, and introduced the terms accessibility, inclusion and belonging in the context of a research organisation.
The presenters shared some practical strategies for including people with disability in research development activities. The benefits for inclusive research management range from supporting pathways for academics in your own research institution to contributions to a more equitable and just society. Why wouldn’t anyone want to do that?!
The talk was well received by research managers from other universities being inspired to adopt disability inclusive practice in their own settings. If you would like to know more, please contact our team!
Find out more about hosting Inclusive and Accessible Events and access our Inclusive Events Checklist: https://inclusivefutures.griffith.edu.au/inclusive-and-accessible-events
Email us:
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Inclusive Futures Book Club Guest: Dr Sarah Brooker, author of My Lucky Stroke
Summary by Dr Maretta Mann
I had the great pleasure of hosting Dr. Sarah Brooker, author of "My Lucky Stroke” at our recent Inclusive Futures Book Club online event on Tuesday 13 August 2024. Having just finished reading Sarah’s book before our event, I found her presentation to contain the same honesty, insight and humour that I enjoyed when reading her story. Here is my summary of our event.
Dr Sarah Brooker and Dr Maretta Mann.A life-saving accident
Sarah shared her story about her life journey pre- and post-stroke. She began by telling us about her fascination as a young child with the brain and her ambition to become a neuroscientist. She was about to begin her Honours degree, when an accident changed the course of her life. While driving with her two sisters in the car, she had a stroke causing her to crash into a pole. That car accident, while giving her multiple serious injuries, probably also saved her life by preventing a sub arachnoid haemorrhage.
Visible and invisible injuries
Sarah explained that whilst she suffered broken bones and other serious injuries from the car accident, the biggest effects on her life, caused by trauma to her brain, were not apparent for days, months and years afterwards. The first of these changes was the discovery that her pituitary gland was missing, and later she learnt that she was deaf in one ear and had lost her sense of smell. These diagnoses took time because Sarah’s brain injury meant that she had no knowledge or recollection of what it meant to hear or to smell from before her accident.
The ”new” Sarah
Sarah’s rehabilitation journey involved learning again how to eat, walk, dress, cook and to socialise with others. In some ways she was like a child learning about “the new Sarah” and the world around her. However, some parts of her memory were functioning very well. Remarkably, Sarah could remember every fact that she had learnt about the human brain and she was still really passionate about neuroscience.
Trying to fit in was the biggest challenge
Once Sarah left the rehabilitation unit, she found it very difficult to fit into the outside world. Her occupational therapist recommended getting a therapy dog, and so Harvey the fluffy Maltese terrier entered her life. He helped her by providing her with another being to care for and in her interactions with other people. So, with Harvey in her life she went back to university and finished her Honours degree in neuropharmacology, and later a PhD. But the ”new Sarah” found that she didn’t fit into the scientific world. She found it difficult to make friends other than with other people with disability.
A friend and a diagnosis
Two important things happened gave Sarah purpose and a feeling of belonging. She met Alan, who became her friend and later her husband. Alan did not make excuses for her and helped her to navigate a social world. Also, she finally got a diagnosis for her brain injury – orbitofrontal syndrome. Sarah told us how powerful it was to have this diagnosis. It helped her to explain and to manage her own behaviour.
The importance of disability disclosure
Sarah tried several career paths but eventually found happiness as a teacher. She recounted a time when she was studying to become a teacher and someone from the university’s Disability Liaison Unit said to her class:
“‘If you need our help, we are here and don't worry, we won't disclose anything.’ And I was so offended. In my mind, a failure to disclose perpetuates ignorance and ignorance only made it harder to survive.”
In Sarah’s view, disclosure was important both for protecting her from harm in her job, as well as helping others to understand that “the silly little foibles that are Sarah” are due to the golf ball-sized hole in her brain.
Sharing experiences of brain injury
In the discussion following Sarah’s presentation, some attendees shared their own experiences of life after brain injury. As always with these events, I sensed a warmth and connection in the virtual room, where people felt safe to be open, and support each other.
'My Lucky Stroke'
My Lucky Stroke is sadly out of print. I was fortunate to find a second-hand copy, but otherwise you can purchase the e-book on Amazon, here: https://www.amazon.com.au/My-Lucky-Stroke-Sarah-Brooker-ebook/dp/B084ZTG7BH
The book is available as an accessible 16pt large print paperback edition from Better Read Than Dead Bookstore in Newtown, purchase here: https://www.betterread.com.au/book/my-lucky-stroke-16pt-large-print-edition.do
Watch the Author talk on YouTube (An accessible transcript in large print or other formats is available upon request): https://youtu.be/DTPWXlcW7Ao?si=Lg709dg8-zx_4vbm
You can also listen to Sarah’s 2018 interview with Richard Fidler on ABC Conversations here: https://www.abc.net.au/listen/programs/conversations/conversations-sarah-brooker-rpt/9926380
More Information:
inclusivefutures@griffith.edu.au
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Pathways to Care: Celebrating Strength, Skill, and Sportsmanship in the Queensland Wheelchair Football League Grand Final
This weekend, the excitement is palpable as the AFL Wheelchair Morningside Panthers prepare to compete in the Grand Final at Nissan Arena. Their journey to the Queensland Wheelchair Football League (QWFL) Grand Final is a testament to their unwavering strength, remarkable skill, and exemplary sportsmanship.
AFL Wheelchair: A New Era in Sports
AFL Wheelchair, which emerged from a series of "come and try" events, has rapidly gained momentum since the Queensland Wheelchair Football League's inception in 2023. Played as a five-a-side game on a basketball court, this adaptation of Australian Rules Football redefines the sport, promoting inclusivity and equity. In AFL Wheelchair, a kick is performed with a handball, and a handball is an underarm throw, offering a unique twist that challenges players to adapt and excel.
Foundation and Growth
The inaugural season saw teams from Beenleigh, Morningside, Ormeau, and Redcliffe lay the foundation for the league. The QWFL not only provides a competitive platform but also serves as a pathway for players to be drafted into the Brisbane Lions and Gold Coast SUNS AFL Wheelchair squads for a two-game QClash series which acts as a selection ground for the Queensland State team for the Toyota National Wheelchair AFL Championship.
Inclusive Futures: Reimagining Disability
As a proud sponsor of the Morningside Panthers AFL Wheelchair Team in 2024, Inclusive Futures: Reimagining Disability celebrates the spirit of sportsmanship and the opportunities that AFL Wheelchair creates for athletes. The support from organisations like Pathways to Care, acting as AFL Queensland’s Inclusion Partner, and Claro Aged Care & Disability is instrumental in fostering an inclusive environment that empowers all players.
Join the Action
This Sunday, the action kicks off with the Pathways to Care Kids Come n Try Clinic at 9:45 am on the center court. Following this, the curtain raiser featuring the Morningside Panthers begins at 11:00 am. Captain Michael Dobbie-Bridges will lead the team into the Grand Final, and spectators are welcome to join in cheering them on at Nissan Arena.
The AFL Wheelchair Grand Final is more than just a game; it is a celebration of strength, skill, and sportsmanship. Come along and witness the rousing performances of these athletes as they redefine what it means to compete with passion and equity in sports. Everyone is welcome to be part of this groundbreaking event!
Who: AFL Wheelchair Morningside Panthers vs Redcliffe Tigers
Where: Nissan Arena
Date: Sunday, 21 July
Time: 11am (Gates open at 9.30am)
Clinic: 9.45am (Centre Court)
Cost: Free entry
Can’t make the game? Watch the Live stream: https://www.youtube.com/@OfficialAFLQ
More information:Michael Dobbie-Bridges
Captain, Morningside Panthers
michael.dobbiebridges@gmail.comJeff Neumann
AFLQ Participation and Programs Manager
Schools, Inclusion and Diversity
jeff.neumann@afl.com.au
Website: https://www.aflq.com.au/afl-wheelchair/
Get Social:
Facebook: https://www.facebook.com/AFLQUEENSLANDTwitter: https://x.com/AFLQ
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Thrilling News: Griffith Inclusive Futures Shines at the 2024 Gold Coast Marathon!
Thrilling News: Griffith Inclusive Futures Shines at the 2024 Gold Coast Marathon!
A massive congratulations to the incredible team from Inclusive Futures: Reimagining Disability and Griffith University! Our staff, students, and ambassadors showcased their exceptional spirit and athleticism at the 2024 Gold Coast Marathon this weekend.
Celebrating success! IFRD team members Rebekah Barker and Maretta Mann proudly display their 10km Finishers' Medals.
Race day smiles from Bek, Adam Sheppard, and Maretta.STANDOUT PERFORMANCES
Geoff Trappett OAM Australian Paralympic legend and Inclusive Futures partner Geoff Trappett dominated the Men’s Open 10km event, clinching first place in his category with a phenomenal time of 30:28. Watching Geoff race is always a thrill!
Kudos to Adam Sheppard (10km, M40-44), Natasha Price (CPL Wheelchair 10km), and the winners: Jake Lappin (CPL Wheelchair Marathon), Emily Tapp (CPL Wheelchair 10km), and Joshua Brass (Wheelchair 4km).
A big shoutout to Garth Plank, CEO of Mentor4me, for his incredible behind-the-scenes efforts in launching the first-ever 4km Wheelchair Race this year! Garth's inspiration and coaching were pivotal for Emily Foster, who discovered her passion for wheelchair racing at a City of Gold Coast ‘come ‘n’ try’ event. Thank you, Garth, for all you do for the wheelchair racing community! Read more here: https://goldcoastmarathon.com.au/2024/07/07/race-report-wheelchair-4km-race-joins-the-gold-coast-marathon-presented-by-asics-suite-of-events/
Dr. Maretta Mann Our dynamic Inclusive Futures Strategic Development Manager, Maretta, blazed through the Southern Cross University 10km Run (F45-49) with a personal best of 51 minutes, securing 19th place in her category. Maretta also joined her family in the Gold Coast Airport 5km Run. Way to go, Maretta!
Rebekah Barker Inclusive Futures Project Support Officer - a newcomer to running, Rebekah tackled her first competitive 10km (F35-39) event, finishing strong with a personal best of 52:32 minutes, and 41st in her category. Fantastic effort, Bek!
Geoff Trappett OAM, Australian paralympic champion, powers past in his race chair.
Dr Maretta Mann together with Geoff post-race.THE POWER OF INCLUSIVE SPORTS
“Play: Active and Engaged Citizens” is one of the core themes of Inclusive Futures: Reimagining Disability. This theme focuses on inclusive sport, recreation and access to safe and healthy environments throughout the lifespan. It will respond to the growing disparity in health outcomes for people with disability and aims to increase participation and performance in competitive sport in the lead up to the Brisbane 2032 Paralympic Games.
Inclusive sports play a crucial role in promoting equality, breaking down barriers, and fostering a sense of community. By providing opportunities for people of all abilities to compete and excel, we not only challenge stereotypes but also inspire others to embrace diversity and inclusivity. Events like the GC Marathon – which has expanded to include three wheelchair events – highlight the importance of making sport accessible to everyone, and showcase the talents and determination of athletes of all abilities.Celebrate with Us!
Hats off to all athletes, including those with disability and chronic conditions, for their outstanding achievements. If you participated, let us know so we can celebrate your success together!
Amazing job, everyone!
VISIT OUR WEBSITE: https://www.griffith.edu.au/research/inclusive-futures-reimagining-disability -
Queensland Disability Research Network (QDRN) Disability Research Strategy and Co-Design Workshop Series
Left to right: Attendees of the Brisbane Workshop and Dr. Talitha Kingsmill.
The Queensland Disability Research Network (QDRN) recently hosted the Disability Research Strategy Engagement and Co-Design Workshop Series, bringing together individuals with disability, citizen scientists, researchers, government agencies, and key disability advocacy organisations across Queensland. These invitation-only, fully accessible workshops aimed to collaboratively shape the research agenda for the Department of Child Safety, Seniors and Disability Services’ Disability Research Strategy 2025-2030.Facilitated by Dr. Talitha Kingsmill (GU), Professor Kate Ames (CQU), Dr. Corey Bloomfield (CQU), and Professor Charlotte Brownlow (USQ), the workshops were held both in-person at Brisbane and Toowoomba, and online. The focus was on identifying research priorities and projects to support Queensland’s Disability Plan, the Disability Royal Commission, NDIS Review recommendations, Elevate 2042 Legacy Strategy, and the Brisbane Olympic and Paralympic Games.
Key stakeholders gathered at Griffith University’s Southbank campus, University of Southern Queensland’s Toowoomba campus and online to discuss a wide range of topics, including employment and financial security, safety rights and justice, education and learning, community attitudes, and departmental regulatory functions. The discussions generated valuable insights and recommendations, which will inform policy and decision-making for the upcoming Disability Research Strategy.
The engagement and co-design workshops are an ongoing effort, with multiple sessions held across Queensland and online. These workshops are crucial for ensuring that diverse voices contribute to shaping the research priorities that will guide future policies. The QDRN invites interested parties to connect and participate in this important work.
We extend our sincere gratitude to the Queensland Government Department of Child Safety, Seniors and Disability Services for their unwavering support of this research. We also wish to thank Griffith University's Inclusive Futures: Reimagining Disability team members, Rebekah Barker, Joe-Anne Kek-Pamenter, Dr Kelsey Chapman, Dr Maretta Mann and Professor Elizabeth Kendall AM, for their invaluable assistance in organising these events, and the wider QDRN team for their continuous dedication and support.
For more information or to become involved, please contact:
Dr. Talitha Kingsmill, Research Fellow and QDRN LeadInclusive Futures: Reimagining Disability, Griffith University
Email: qdrn@griffith.edu.au
Dr Talitha Kingsmill addresses the Brisbane workshop. -
ICA Preconference: Dignified Representation of Disability and Diversity in the Media
EVENT RECAP:
Dignified Representation of Disability and Diversity in the MediaPresented by: Inclusive Futures: Reimagining Disability, Griffith University
Last week’s ICA preconference, "The Inaugural Disability Communications and Media Preconference 2024: Emerging or Emerged?", brought together scholars from 17 countries to delve into media discourse, participatory research, and disability representation.
On Friday, we were inspired by a roundtable led by Dr. Monique Lewis from Inclusive Futures: Reimagining Disability at Griffith University. Monique's skillful moderation highlighted critical issues, fostering meaningful change in inclusive media representation.
In this roundtable discussion, we contemplated the overarching landscape of disability representations in news and popular media forms, and how these portrayals work to construct notions of ‘disability’ and the ‘disabled person’. Invisibility and erasure of disability have been ongoing concerns for everyone involved in advocacy work, activism, community engagement and academic scholarship, with dignity as a paramount focus. We heard from panel members about their lived experiences of both invisibility and visibility in the media context, as well as insights into their own perspectives, advocacy, and contributions to disrupting, creating, and producing media content about disability.The session also unpacked some of the broader social, cultural, political, and economic implications of ableism and disablism in the media, as well as the wealth of creative opportunities for social transformation, with inclusivity at its heart.
Dr Faith Valencia-Forrester, Lisa Cox, Sara Shams, Tina (Captioner) and Dr Monique Lewis.PANELISTS
Dr. Monique Lewis: A senior lecturer in media and communication and a member of Inclusive Futures at Griffith University. Her research spans media, health and medicine, and risk sociologies, with a particular interest in news media landscapes, framing, and practice. She is the lead editor of Communicating COVID-19: Interdisciplinary Perspectives (2021) and Communicating COVID-19: Media, Trust and Public Engagement (2024) published by Palgrave.
Sara Shams: A pharmacist, model, speaker, creator, actor and formidable disability advocate. As a bilateral above knee amputee, her mission is to raise awareness on what it takes to be truly and authentically inclusive within the fashion and media industry, and beyond.
Lisa Cox: A TEDx speaker and internationally acclaimed disability advocate, and co-author of Media Diversity Australia’s ‘Disability Reporting Handbook’. Combining her professional background in advertising and media, with a lived experience of disability, Lisa is committed to changing public perceptions of disability by empowering professionals in some of the world’s most influential industries, like media. Her solutions-focused approach is helping professionals better navigate the nuances of disability inclusion through their content and workplace practices.
Dr. Faith Valencia Forrester: An expert in work-integrated learning and social change initiatives like Project Open Doors. Faith has combined her media experience, degrees in Arts, Law and Business, and completed her PhD in inclusive work-integrated learning with a view to developing an inclusive and diverse media cohort capable of changing the media landscape for the better.
Dr Maretta Mann (Strategic Development Manager, Inclusive Futures: Reimagining Disability) together with Lisa Cox, Dr Faith Valencia-Forrester and Sara Shams; Panel Dr Faith Valencia-Forrester and Sara Shams; Moderator Dr Monique Lewis.WHY MEDIA REPRESENTATION MATTERS
Media representation of people with disability fosters more inclusive societies. As Mark Deuze noted in 2011, we live in media, not just with it. Our panellists discussed how media often portrays disability, along with its influence on societal perceptions, and the power relations involved.
PERSONAL STORIES AND PROFESSIONAL INSIGHTS
Sara Shams shared a poignant story illustrating misconceptions about disability. A public bathroom encounter highlighted how deeply ingrained biases and microaggressions are, stressing the need to normalise disability and break down societal and self-imposed barriers.
Lisa Cox and Monique Lewis discussed the impact of media representations on education and employment. Lisa’s experiences after acquiring her disabilities highlighted the social attitudes that hinder employment opportunities, despite unchanged qualifications and experience.
Dr. Faith Valencia Forrester's contribution was a profound exploration of the intersection between work-integrated learning (WIL), social change initiatives like Project Open Doors, and media representation of disability. She emphasised the transformative impact of WIL in enhancing employment opportunities for individuals with disability, bridging the gap between education and workplace readiness. Dr. Forrester highlighted Project Open Doors as a pioneering effort to foster inclusive work environments through collaborative partnerships with businesses. Her discussion underscored the crucial role of media in shaping perceptions of disability, advocating for dignified and respectful portrayals to promote societal inclusion. Dr. Forrester championed the importance of inclusive practices across sectors to drive meaningful social change and create more equitable opportunities for people with disability.
Dr Faith Valencia-Forrester; Professor Kuansong Victor Zhuang and Professor Katie Ellis; Attendees at the event listen to the panel discussion.MEDIA DIVERSITY AUSTRALIA DISABILITY REPORTING HANDBOOK
The discussion on the Disability Reporting Handbook, led by co-authors Lisa Cox and Faith Valencia Forrester, highlighted its pivotal role in guiding journalists towards more accurate and respectful reporting on disability issues. Developed in collaboration with Griffith University's Inclusive Futures, the handbook stands as a comprehensive resource shaped by input from individuals with lived experiences of disability and disability advocates. Lisa emphasised the handbook's practical utility in newsrooms, providing clear guidelines to counter prevailing biases and misconceptions in media representations of disability. Faith underscored the importance of inclusive language and perspectives in journalistic practices, urging newsrooms to adopt these principles to foster a more inclusive media landscape. The handbook's development process and its potential impact in reshaping media narratives were central to their discussion, reflecting a collective effort to promote greater understanding and sensitivity towards disability in journalism.
The addition of a marketing and advertising section within the Disability Reporting Handbook represents a pivotal enhancement aimed at extending its influence beyond traditional journalism. Led by Lisa Cox and designed by Jo Kek-Pamenter, this chapter addresses a crucial void by embedding disability perspectives into media and communication strategies. It equips journalists, advertising professionals, government entities, businesses, and individuals alike with the tools needed to communicate inclusively. By furnishing practical guidance on language use and sensitivity, this section empowers stakeholders to authentically engage with the diverse experiences within the disability community, thereby catalysing significant social change and nurturing a more inclusive media environment.
Download a copy: https://www.mediadiversityaustralia.org/disability-reporting-handbook/THE FUTURE
Katie Ellis warned against the pitfalls of "inspiration porn," advocating for normalised, diverse representation of the disability community. The panel called for increased visibility and representation to drive social change and create inclusive media landscapes.
The roundtable’s rich discussion, led by the the passionate moderation by Monique, showcased the transformative power of inclusive dialogue and the necessity of dignified media representation.
ACKNOWLEDGEMENT
The Inclusive Futures team would like to thank our hosts, the International Communications Association (ICA), Professor Kuansong Victor Zhuang, Professor Katie Ellis and Professor Gerard Goggin organisers for inviting us to participate in this impactful event.
#InclusiveFutures #DisabilityRepresentation #MediaMatters #ICAPreconference2024 #InclusiveDialogue #DisabilityInMedia
Lisa Cox together with Sara Shams; Pallav Pant; Professor Kuansong Victor Zhuang and Professor Katie Ellis; Professor Gerard Goggin. -
Honoring Excellence: Prof. Elizabeth Kendall Appointed Member of the Order of Australia in 2024 King's Birthday Honours
Congratulations to our Director, Professor Elizabeth Kendall, on being appointed a Member of the Order of Australia (AM) in the King’s Birthday 2024 Honours List.
Professor Kendall has dedicated her life, professionally and personally, to improving the lives of people with disability, for more than 40 years. She is a pioneer of disability and rehabilitation research, making extensive seminal contributions in peer reviewed journals, books, and industry reports.
As the Foundation Director of The Hopkins Centre (a collaborative between Griffith University, Metro South Healthand the Motor Accident Insurance Commission), Elizabeth was instrumental in embedding consumer engagement and practitioner capacity, resulting in impactful research designed and conducted in collaboration with end users. Under Professor Kendall’s leadership, research has been translated into sustainable components of the service system for people with disability.
Under Professor Kendall’s leadership of Griffith University’s Inclusive Futures: Reimagining Disability, Professor Kendall is leading innovative and interdisciplinary approaches to creating inclusive places for people with disability to live, work and play. The Inclusive Futures Hub, an online, accessible consumer engagement platform, has grown to over 700 members, who have contributed to state and national policy reforms for people with disability.
Elizabeth is a tireless advocate and champion for people with disability. She has also mentored many research students and staff to lead successful careers of their own.
We are so proud of Elizabeth and delighted to see her receive this deserving recognition.
Read more in the Griffith News: https://news.griffith.edu.au/2024/06/10/leading-disability-advocate-honoured-in-kings-birthday-list/
Visit the Inclusive Futures Website: https://www.griffith.edu.au/research/inclusive-futures-reimagining-disability
Register to become a member: https://inclusivefutures.griffith.edu.au/
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Meaningful Employment for People with Disability in Queensland
Meaningful Employment for People with Disability in Queensland (Final Report)
Project Aims
The Department of Seniors, Disability Services and Aboriginal and Torres Strait Islander Partnerships (DSDSATSIP) requested a high-level proposal to examine employment experiences of people with disability in Queensland.
The project aimed to identify insights unique to Queensland and provide evidence that could improve experiences of people with disability (both with and without NDIS funding) in relation to employment. Specifically, the project:
- Investigated employment experiences of people with disability in Queensland (formal, unpaid and supported);
- Explored the nature of financial security for Queenslanders with disability;
- Examined the drivers for satisfaction or dissatisfaction for those who have, or have previously had, employment and the challenges to success in employment; and
- Explored employment and work aspirations, including preferred career pathways, hours of work and locations.
This project was conducted in three phases:
- Phase 1: Literature review and statistical analysis;
- Phase 2: Project Co-development;
- Phase 3: Data collection and analysis by Citizen Scientists.
Visit the Project page on the Inclusive Futures Hub.
The Final Report contains the findings from the qualitative and quantitative data collection with citizen scientists, including strategies on how to improve meaningful employment for people with disability.
Summary of the findings
Meaningful employment for people with disability necessitates workplaces that foster growth, autonomy, flexibility, support, safety, and dignity. However, current practices often fall short of meeting these essential criteria, as highlighted in our study on disability employment in Queensland. Barriers to employment persist throughout individuals' lives, particularly for those with developmental disability or acquired disability later in life. These barriers encompass various stages of the employment process and require tailored interventions, including improved training and support during education, enhanced transition programs, and better accessibility in recruitment and workplace accommodations. Moreover, there's a pressing need to address misconceptions and stigma surrounding disability, foster inclusive workplaces, and provide education and resources for both employers and employees.Efforts to improve disability employment outcomes must prioritise meaningful work and acknowledge the diverse needs and abilities of individuals with disability. This involves empowering individuals through self-employment opportunities, promoting inclusive practices in the workforce, and advocating for policy changes to address financial disincentives and support mechanisms. Collaboration among stakeholders, including citizen scientists and diverse disability groups, is essential for developing comprehensive strategies that address systemic challenges and harness the strengths and contributions of people with disability in the workforce. Ultimately, a concerted effort to reshape attitudes, practices, and policies is vital to creating a more inclusive and supportive environment for disability employment in Queensland and beyond.
The Final Report can be found on this link: https://doi.org/10.25904/1912/5090
Authors
Mowbray, Paula K
Kendall, Elizabeth
Chapman, Kelsey
Khan, Maria
Allen, Connie
Berridge, MarkPublished by
Inclusive Futures: Reimagining Disability, Griffith UniversityPlease contact Dr. Paula Mowbray for further information:
Phone: (07) 3735 4708
Email: p.mowbray@griffith.edu.auGriffith University Ethics Approval: 2022/894
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Disability Inclusion Author Talk Series Mary Li and Sophie – Navigating Hearing Loss
Mary Li together with Inclusive Futures Book Club and Author Talk host Dr. Maretta MannOn Wednesday, April 3, 2024, the Inclusive Futures Book Club hosted author Mary Li for an insightful conversation with Dr. Maretta Mann. The discussion delved into Mary’s remarkable dancing career, her marriage to Li Cunxin AO, and the challenges faced by her daughter, Sophie, who was diagnosed as profoundly deaf at 17 months. They explored career decisions, the absence of role models, and the complexities of education and social interactions. Mary and Sophie’s journey, navigating both the hearing and deaf worlds, provided a powerful narrative of resilience and adaptation.
An Unlikely Beginning
Author Mary Li and Inclusive Futures Author Talk host Dr. Maretta Mann Mary Li’s memoir traces her journey from Rockhampton, Australia, where she grew up as Mary McKendry—one of eight children. Despite an unconventional start, Mary’s innate musicality drew her to ballet. She recalls, “The minute I walked into the studio at eight years old, and I could hear the music, I was lifted to another world.” Her teacher recognised her potential, leading to an invitation to the Royal Ballet School in London at age 16.
Mary Li and her dance partner and husband Li Cunxin OAM dance Swan Lake Mary’s Dancing Career
Mary joined the London Festival Ballet (now the English National Ballet) in 1977. As she ascended the ranks, she danced principal roles in classical ballets, collaborated with renowned choreographers, and performed on international stages. One of many highlights was visiting China in the early 1980s—a ground-breaking experience.
A Shocking Diagnosis
In 1989, Mary Li and her husband, Li Cunxin AO, welcomed their daughter, Sophie. Newborn hearing screening wasn’t routine then, but after noticing Sophie’s lack of reaction to a popping balloon, they booked a hearing test. The diagnosis—profound deafness—shocked them both. Mary immediately thought of Helen Keller’s experience. Despite advancements, the shock remains significant for parents. Mary made an early decision: she would give up her dancing career to ensure Sophie had equal opportunities.
Finding a Way for Sophie
Mary described that at the time (1990s) there was no internet, and no role models in her life that would help parents to support their deaf children. Sign language was not really presented as a viable option. She fortunately met one wonderful speech therapist who also had a child with disability. “She was the one that looked at me in the room and said “you know, you can help her”… she was amazing.” But healthcare and support weren’t coordinated, and parents had to find their own way.
Challenging Social Situations
In social situations, Mary faced challenges related to her daughter Sophie’s hearing loss. At a Mother’s Group, comparing Sophie’s speech development with other children highlighted the differences. Sophie missed social conversations without Mary as her interpreter. Birthday celebrations were exhausting, but a thoughtful friend organised a small party for Sophie. As Sophie entered her teenage years, group situations became even more difficult—never being privy to secrets and missing out on conversations affected her confidence profoundly.
Mother as Teacher
Mary took every opportunity to teach Sophie to speak. “Even in the bath tub I put on her hearing aids because she was still… Instead of making individual lessons I just talked all day about everything that was around me.” She spoke about a revelation when Sophie was about four years old that she would need to teach Sophie how to think, because this is very difficult to do without the language. This is when she decided to investigate a cochlear implant.
Navigating School and University
Mary shared the difficulty in finding a good school for Sophie. She tried out a specialist school for deaf children, and mainstream schools (in both Australia and the USA). She wanted Sophie to have a good education but also for Sophie to experience social situations. None of the school experiences were perfect. Later Sophie went to university, and that presented challenges as well. Even if there were Auslan (Australian Sign Language) interpreters, sometimes they wouldn’t be available for particular classes.
Sophie and Dancing
Mary spoke about the benefits that Sophie has had from doing dancing. First, it was a new opportunity, and this extended Sophie’s opportunity to learn new words from being immersed in different situations. She said that when you have a hearing-impaired child you worry about background noise, so basketball is out. But in a ballet studio the children have to be quiet and listen to the teacher. So, in a way Sophie was having speech therapy without knowing it. Interestingly, she was also very expressive and musical. She ended up doing a year 12 dance, and she was one of the top 5% in the state. She was particularly good at tap dancing, and Mary said this is a great form of dance for Deaf children.
Cochlear Implants: A Dual Perspective
Mary acknowledges that cochlear implants have significantly transformed Sophie’s life, but they come with limitations. Sophie now communicates using Auslan and benefits from the implants, straddling both the hearing and deaf worlds. However, Sophie’s first implant failed due to a software glitch, leading to a second surgery after 26 years.
Sophie’s reality remains unchanged—she goes to bed deaf and wakes up the same way. Yet, the implant acts as a powerful tool, akin to putting on glasses.
Nowadays, in her mentoring role, Sophie emphasises confidence-building. Many individuals with implants or hearing loss struggle with confidence, but Sophie guides them toward reclaiming it. Whether in the workforce or daily life, she empowers others to overcome barriers and find their voice.
Where is Sophie Now?
Mary told us a bit about what Sophie has been doing since her book was published in 2020. Amongst many exciting developments, Sophie has invented a subscription-based global online signing dictionary called Sign How, as well as a signing app.
Resources:
· To read the full story, purchase Mary’s Last Dance by Mary Li online.
· Learn about Sophie’s Sign How dictionary.
This condensed account was written by Dr Maretta Mann, Strategic Development Manager, and host of the Book Club at Inclusive Futures: Reimagining Disability.
Dr Maretta Mann and Mary Li -
Brain Awareness Week
Brain Awareness Week (11-15 March), initiated by the Brain Foundation, is a time when we encourage you to think more about your brain health and help raise awareness for brain diseases, disorders and injuries, including brain tumours.
Every day in Australia, six people are diagnosed with a brain tumour and four will die. Brain tumour is a complex illness with the combined effects of cancer and brain injury. People with brain tumour and their families experience considerable distress related to the diagnosis, threat to life and changes in the person’s abilities and lifestyle.
Research led by Professor Tamara Ownsworth from Griffith University demonstrated the positive impact of the telehealth Making Sense of Brain Tumour (Tele-MAST) for improving mental health and quality of life of individuals with brain tumour, as the well as the potential for this program to ease the financial burden on the healthcare system . Tele-MAST is now being adopted by the Cancer Council Queensland as the statewide model of psychosocial support for people with brain tumour and their families.
Griffith University researchers (Professor Tamara Ownsworth, Dr Kasia Lion and Julia Robertson) are now collaborating with Metro South Health (Radiation Oncology, Princess Alexandra Hospital), The Mark Hughes Foundation and Peace of Mind Foundation to tackle further challenges faced by people with brain tumour and their families.
Funded by the Mark Hughes Foundation Centre for Brain Cancer, the first project partners with people with brain tumour and family members to develop and trial a communication and emotional support skills training program for medical, nursing, and allied health professionals working with people with brain tumour and their families.
"There was nothing but a cold hard clinical diagnosis....no offer of pre-surgery counselling to deal with the human side of it....we were left swinging pretty wildly in the wind.” (Ownsworth et al., 2011, p. 129)
Health professionals' (HPs) approach to communicating the diagnosis, prognosis and treatment, and response to questions and distress has an immeasurable impact on the emotional wellbeing of people with a brain tumour and their family members. HPs report gaps in their knowledge and skills and often lack confidence with communication and providing emotional support. In the first phase, we will seek input from consumers and HPs on the focus and approach to training with a view to understanding the priority areas to include in training programs and optimal approach (i.e., what and how to train HPs). For the second phase, we will focus on evaluating the impact of this training on HPs' knowledge, skills and confidence.
The second project is funded by the Metro South Health Research Support Scheme and aims to co-design and pilot a multimedia educational platform specific to the needs of people with benign brain tumour and lower-grade glioma
“We just wish that someone would have said to us right at the beginning here’s a very good guide, because when you have a brain tumour situation, oh you’re lost” (Ownsworth et al., 2015, p.7-18).
Benign or non-malignant brain tumours account for 70% of all brain and other CNS tumours. Yet, the information and support needs of this group are frequently overlooked despite them experiencing similar levels of distress and everyday impacts to those with malignant brain tumour. This project aims to improve people’s ability to find, understand and use information about brain tumour and share this knowledge with their support networks. In partnership with consumers and multidisciplinary healthcare providers, the project will result in new online resources that can be rapidly taken up in practice to improve the quality service provision and continuity of care for this population.
Professor Tamara Ownsworth, Research Director (Research Development) at The Hopkins Centre, Griffith University, is a clinical neuropsychologist with more than 25-years’ experience in rehabilitation and psychosocial intervention for people with acquired brain injury, including traumatic brain injury, brain tumour, stroke and dementia.
More about Enhancing quality of life for brain tumour survivors: https://news.griffith.edu.au/2023/07/25/enhancing-quality-of-life-for-brain-tumour-survivors/
Find out more about Brain Awareness Week: https://brainfoundation.org.au/brain-awareness-week/
