Latest News

Mary Li together with Inclusive Futures Book Club and Author Talk host Dr. Maretta Mann

On 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.

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 (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/

[TO1]Can this say ‘….burden on the healthcare system’

A montage of images from APP 2024 including Morris Misel, Prof. Elizabeth Kendall, Julia Robertson, Julie Rogan and Dr. Chris Edwards.

Last Friday at APP 2024 the Australian Pharmacy Professional's Annual Conference on the Gold Coast, Morris Misel had the privilege of chairing a powerful panel discussion on disability and community pharmacists.

These conversations are critical to shaping the future of healthcare, and this session was a shining example of why.

The panel, drawn from Griffith University's Inclusive Futures: Reimagining Disability community (a network of 500+ incredible individuals with lived experience of disability), featured Dr Chris Edwards, Julia Robertson and Julie Rogan each sharing their unique perspective on navigating community pharmacies.

From sensory overload for individuals with autism to medication delays due to unnecessary concerns, their stories highlighted the importance of human connection in healthcare.

When pharmacists took the time to understand their needs, the experience was positive. When communication faltered, frustration arose.

The best part? The audience, both in-person and online, fostered a fantastic atmosphere of acceptance. Pharmacists felt comfortable asking insightful questions and the panellists were thrilled to share their experiences.

Honest dialogue, where everyone is heard without fear of offense, is the cornerstone of progress.

Here's the exciting part: APP offered practical solutions!

From government programs allowing for more pharmacist-patient interaction to readily implemented processes, there are tangible steps we can take today.

The Takeaway: Disability Impacts Everyone

Disability affects 1 in 4 Australians, if you include those with chronic pain, as well as carers & families the figure jumps to 7 in 10 Australians are directly impacted by disability.

Imagine if any other business ignored such a significant, loyal customer base?

Pharmacies have a golden opportunity to improve access and care for a vast demographic.

By listening to the voices of lived experience, we will create a more inclusive and effective healthcare system for all.

Ready to Start a Conversation?

If you're looking to integrate lived experience disability voices into your industry or business, we can help! Whether it's a chat, panel discussion, keynote address, or strategy workshop, let's create impactful conversations that pave the way for a more inclusive future.

A huge thank you to #APP24 for providing a platform for this crucial conversation, and to Dr. Chris Edwards, Julia Robertson, and Julie Rogan for bravely sharing their stories and insights. Your openness paves the way for a more understanding and inclusive healthcare system!

Video and Transcript
If you missed this exciting Guild APP panel session, view the video recording on our Inclusive Futures YouTube Account here. A written transcript is also available, please contact j.kek-pamenter@griffith.edu.au or inclusivefutures@griffith.edu.au for an accessible copy.

Disability Inclusion Author Talk Series: With guest speaker, Matt Levy OAM PLY Paralympian and author of ‘Going the Distance: Identify and create your own lane to success’. Hosted by Dr Maretta Mann.

Matt Levy OAM PLY with Dr. Maretta Mann

Last Tuesday, 27 February, Griffith Inclusive Futures: Reimagining Disability hosted esteemed guest Matt Levy OAM PLY, Australian Paralympian and author of “Going the Distance”.

In his talk, Matt shared his life journey, marked by early challenges due to being born prematurely with cerebral palsy, and emphasised the transformative role of swimming therapy in overcoming his physical limitations. Matt also discussed the impact of cerebral palsy on his daily life, highlighting the importance of recognising that disabilities affect individuals differently.

From top left to right: Matt Levy OAM; Julia Robertson together with Matt Levy and Mark Berridge; Attendees at the Author Talk held at Nathan Campus, Griffith University.

Matt has developed a framework based on his experiences. He stressed the significance of setting manageable goals, driven by passion and belief. He told us the story of where it all started for him, when he was left behind at the pool after the school swimming carnival. He found a way to navigate across Sydney via public transport to get home that took him over three hours and it taught him a crucial lesson in goal-setting.

Matt also detailed his remarkable achievements, participating in five Paralympic Games, emphasising that the journey and the learning experiences matter more than the accolades. Matt also reflected on a pivotal moment during the 2008 Paralympic Games when he realised the need for a change in attitude and commitment to continuous improvement.

He delved into the importance of having a dream, a desire, and creating tools for success. Matt shared the necessity of focusing on the purpose behind one's actions, particularly during challenging days, and encouraged attendees to make the most out of every moment, whether positive or negative.

Matt introduced his ‘action plan’, breaking down big goals into smaller, manageable steps, and underscored the importance of simplicity and a focused approach in achieving success, drawing parallels between his training sessions and broader life goals.

Matt also emphasied the role of a supportive team, including family, friends, colleagues, and coaches, in personal growth., and highlighted the significance of engaging with one's inner circle through meaningful conversations, collaborations, and shared experiences.

Wapping up a most impactful Author Talk, Matt concluded by stressing the value of lifting each other higher and turning negatives into positives through supportive relationships.

I was so inspired by Matt, who has achieved so much success by following a process of setting goals and then working towards them, and also of approaching the setbacks or disappointments as an opportunity for reflection, learning and growth.

Matt also encouraged others not to compare themselves with others, but to follow one’s own path.

I think everyone in the room left feeling encouraged by Matt’s practical and inspiring approach to reaching your potential.

From top left to right: Prof. David Thiel; Cathy Easte, Tara Horner and Matt Levy OAM PLY, Captioner Roxane Lane; and Nathaniel Audley, Tara Horner, Maureen Sullivan and Mark Berridge.

TRANSCRIPT:

If you wish to obtain a transcript of Matt’s keynote talk, please email the Inclusive Futures: Reimagining team at: inclusivefutures@griffith.edu.au

UPCOMING EVENTS:

Our next Author Talk guest is the highly esteemed Mary Li – Principal Repetiteur and Ballet Mistress with the Queensland Ballet and author of “Mary’s Last Dance”, to be held on Wednesday, 3 April 11.30am-1.30pm, at the Queensland Conservatorium (QCGU) Foyer, SO1, Southbank Campus, Griffith University.

Register for this FREE and inclusive event on this link: https://shorturl.at/JOV46

Join us as experts from Griffith University’s Sport and Gender Equity (SaGE) team delve into the critical aspects of investing in women's sports, exploring transforming policy frameworks, gender budgeting, and the transformative power of research.

From dismantling stereotypes to ensuring inclusivity for women with disability, this conversation values intersectional thinking and diverse meanings of ‘sport’ to go beyond the scoreline. Our Griffith feminist sport researchers offer insights into reshaping the narrative and fostering greater equity in the world of sport on and off the field.

Guest Speakers:

Professor Simone Fullagar – Inclusive Futures: Reimagining Disability “Inclusive Play” Theme Lead
https://experts.griffith.edu.au/19065-simone-fullagar

Associate Professor Adele Pavlidis
https://experts.griffith.edu.au/7436-adele-pavlidis

Dr Diti Bhattacharya
https://experts.griffith.edu.au/10229-diti-bhattacharya

Dr Georgia Munro-Cook
https://experts.griffith.edu.au/38757-georgia-munrocook

Visit the SAGE Website
https://www.griffith.edu.au/griffith-business-school/department-tourism-sport-hotel-management/sage-at-griffith

Video link: https://youtu.be/c1IZadlE_tE

Acknowledgement of Country:

Griffith University acknowledges the people who are the traditional custodians of the land and pays respect to the Elders, past and present, and extends that respect to other Aboriginal and Torres Strait Islander peoples. South Bank, Nathan and Mount Gravatt campuses are situated on the land of the Yugarabul, Yuggera, Jagera and Turrbal peoples. Logan is situated on the land of the Yuggera, Turrbal, Yugarabul, Jagera and Yugambeh peoples. The Gold Coast is situated on the land of the Yugambeh/Kombumerri peoples.

Author: Monique Mita

Queenslanders with disability are encouraged to have their say on what it’s like to live in the sunshine state with the release of the 2024 Voice of Queenslanders with Disability survey.

“The 2023 survey had great impact on policy and planning in Queensland,” said Chief Investigator and Research Fellow with Inclusive Futures and the Hopkins Centre, Kelsey Chapman.

“The 2024 Voice of Queenslanders survey will give us keen insight into how the lives of Queenslanders with disability, their families and the people who support them have changed since last year.”

Griffith University Inclusive Futures: Reimagining Disability have been working with Queenslanders with Disability Network (QDN) to collect the information and deliver the annual survey results.

“We’re looking forward to generating and collecting more stories and partnering with the Queensland Government and QDN to build a more inclusive state for people with disability,” she said.

"The 2023 was a landmark in Australian disability policy and reform, and we are looking forward to understanding how this impacted the lives of Queenslanders with disability, their family and the people who support them.

“We will be paying special attention to comparing this year’s data with last year to identify key trends."

Visit the Voice of Queenslanders with Disability Survey on the link below:
https://qdn.org.au/voice-of-queenslanders-with-disability-survey/

You can take the survey that is right for you!
https://inclusivefutures.griffith.edu.au/hub-page/vqd

Griffith’s Inclusive Futures: Reimagining Disability together with the Dylan Alcott Foundation is proud to announce the Dylan Alcott Foundation Scholarship for commencing undergraduate students with disability.

The Dylan Alcott Foundation Scholarship provides up to AUD $40,000 ($10,000 per annum) to support a commencing student (Australian Citizen or Australian Permanent Resident), studying an undergraduate program at Griffith University.

This scholarship is available for students who are registered with Griffith University Student Disability and Accessibility support services and demonstrate educational disadvantage.

Scholarship Details:

https://www.griffith.edu.au/scholarships/scholarship-listings/dylan-alcott-foundation-scholarship

Apply by 4pm, Monday 15 April 2024.

About the Dylan Alcott Foundation:

The Dylan Alcott Foundation is committed to helping young Australians with disability overcome the barriers of entry to sport and education by providing fundraising for grants, scholarships and mentoring.

Their fundraising efforts help to achieve big dreams through tangible means, purchasing expensive and much-needed sporting equipment, and providing scholarships at leading education institutions, and mentoring programs with industry trailblazers.

Having a core focus on enriching the lives of young people with disabilities by eliminating the barriers of entry to get involved in sport and study, the Dylan Alcott Foundation harnesses the energy and capabilities of their people to empower positive change for our community. The Dylan Alcott Foundation knows their people perform best when they feel valued, happy, healthy and encouraged to bring their whole and authentic self to their studies and work every day.

For more information contact:

Griffith Scholarships Office
Phone: 07 3735 7974
Email: scholarships@griffith.edu.au

Apply via the scholarship application process: https://www.griffith.edu.au/scholarships/before-you-apply

Join award-winning ensemble Matt Hsu’s Obscure Orchestra, guest-vocalist Erin Fitzsimon (aka INIGO), and composers Jodie Rottle, Hannah Reardon-Smith, and Saro Roro as they explore companionship through music.

Together, they present new alternative pop and experimental works that position disability and queer friendship at the forefront. These musical companions endeavor to make this a sensory friendly event for performers and audience members alike. It features music arranged in ways that carefully consider the accessibility requirements of the performers, including light, motion, ensemble volume through instrumentation, and physical accessibility. These elements become companions, or friends, that shape compositional process and collective music making.

Matt Hsu’s Obscure Orchestra is a DIY anti-racist ensemble underpinned by community-minded inclusivity, comprising of 20+ BIPOC, First Nations, disabled, non-binary and trans artists. Challenging the pomp and formality of classical orchestras, Obscure Orchestra is regarded as one of Australia’s most respected ensembles.

Date: 8 March 2024

Time: 8pm

Duration: 120 minutes

Location: Brisbane Powerhouse, 119 Lamington Street, New Farm Queensland

This is a sensory friendly and accessible event, for tickets or enquiries, visit the Brisbane Powerhouse events website: https://brisbanepowerhouse.org/events/obscure-orchestra/

Please share amongst your networks.

More information, please contact:

Dr Jodie Rottle, Resident Adjunct
Creative Arts Research Institute (CARI)
Griffith University
Email: j.rottle@griffith.edu.au
Tel: 0434 998 330

Inclusive Futures: Reimagining Disability invites you to attend our Author Talk event with esteemed guest Mary Li (author of Mary’s Last Dance), hosted by Dr Maretta Mann.

Mary Li (née McKendry) principal repétitéur at the Queensland Ballet, faced a unique challenge when her daughter, Sophie, was diagnosed as profoundly deaf at 17 months. Mary, a former principal dancer with the London Festival Ballet (English National Ballet), shifted her focus to support Sophie’s journey, juggling speech therapy and adapting her busy ballet schedule.

Sophie, determined to navigate the hearing world, learned to lip-read, received a cochlear implant, and embraced mainstream education. As a young woman, she discovered Auslan, enhancing her language skills and boosting confidence. Reflecting on Sophie’s journey after completing her memoir, “Mary’s Last Dance”, the entire family embraced Auslan, deepening their bond.

Born in Rockhampton, Queensland, Mary Li’s illustrious ballet career includes stints with the Royal Ballet and Houston Ballet. Returning to Australia, she spent a decade with the Australian Ballet before joining theQueensland Ballet as Principal Repétitéur. Alongside her husband Li Cunxin AO (https://licunxin.com), the artistic director, they elevated the company’s global standing.

Mary’s resilience, a hallmark of her ballet career, proved crucial in navigating and ultimately embracing her child’s disability. Her story, a fusion of ballet and family strength, exemplifies courage, determination, and unwavering will.

Find out more about Mary Li and her book “Mary’s Last Dance” at https://www.penguin.com.au/authors/mary-li

Visit Sophie Li’s website https://www.sophieli.com.au.

Event Details

Wednesday, 3 April 2024, 11.30 am–1.30 pm
Queensland Conservatorium (QCGU) Foyer, S01
Southbank Campus, Griffith University
Access a venue map on this link or visit https://www.griffith.edu.au/__data/assets/pdf_file/0023/361670/South-Bank-campus-map.pdf

RSVP

Please confirm your attendance before:
Thursday, 21 March 2024
Click here to register your attendance or visit: https://forms.office.com/r/gLhhR3iV7m

Alternatively register via the QR Code below.

Contact us

Inclusive Futures: Reimagining Disability
inclusivefutures@griffith.edu.au

The Suncoast Spinners in action

A Griffith Inclusive Futures Reimagining Disability engineering research team worked with athletes at the largest wheelchair basketball tournament in Australia – The Suncoast Spinners in Caloundra – to investigate factors impacting tyre failure.

In the lead up to the 2024 Paralympic Games, the project aims to investigate the effects of wheelchair tyre failure on athlete’s performance, workload, and potential risks, as well as game disruption, and to support athletes with engineered solutions and recommendations.

The team mounted sensors on wheelchairs to measure changes in tyre pressure, forces, and impacts of various movements and accelerations during of the match.

Research team: Mr Marc Salet, Dr Hugo Espinosa, Dr David Rowlands and Professor Emeritus David Thiel.

Back row (L-R). Prof. Emeritus David Thiel, Dr David Rowlands, Hayden Siebuhr, Zach Bings, Jake Fluwood, Jordan Bartley, Marc Salet and Dr Hugo Espinosa. Front row (L-R): Lachlan Dalton and Mitch Duncan.

For more information or to get involved in the research, please contact:

Griffith Institute for Integrated and Intelligent Systems
Dr Hugo Espinosa: h.espinosa@griffith.edu.au
https://experts.griffith.edu.au/8302-hugo-espinosa/about
https://www.griffith.edu.au/institute-integrated-intelligent-systems

Griffith School of Engineering and Built Environment
Professor Emeritus David Thiel: d.thiel@griffith.edu.au
https://experts.griffith.edu.au/18651-david-thiel
https://www.griffith.edu.au/griffith-sciences/school-engineering-built-environment

Griffith Institute for Integrated and Intelligent Systems
Dr David Rowlands: d.rowlands@griffith.edu.au
https://experts.griffith.edu.au/7989-david-rowlands
https://www.griffith.edu.au/institute-integrated-intelligent-systems

Event Information: https://suncoastspinners.com.au/wheelchair-basketball/2024-tournament/

Research team desk: Marc Salet; Dr Hugo Espinosa and Marc Salet monitoring sensor data; Marc undertaking sensor mounting; and the sensor mounted ready for data collection during the game.