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A Griffith University and Queenslanders with Disability Network-led research initiative to discover the lived experience of Queenslanders with disability was released at Australia’s Disability Strategy Forum in Brisbane today.

The first annual Voice of Queenslanders with Disability report which aims to inform policy to remove barriers to access and produce equitable outcomes for a diverse Queensland, was funded by the Queensland Government and delivered in partnership with Queenslanders with Disability Network.

Griffith researchers adopted a unique approach to gathering survey information by engaging nine citizen scientists with lived experience of disability to enable participants to share their stories authentically and transparently about challenges and successes in their lives.

Griffith Inclusive Futures: Reimagining Disability and Hopkins Centre Research Fellow Kelsey Chapman said the initiative examined a range of areas which impact daily life for Queenslanders with disability.

“The findings reflect a meaningful step towards understanding what life is like for Queenslanders with disability, their family and carers, and the organisations that support them,” Ms Chapman said.

““Participants called for improved standard of living and social protection for Queenslanders with disability, to improve economic security, accessible housing, increased employment opportunities, and support lifelong learning.”

Read more about the report in Griffith News: https://news.griffith.edu.au/2023/06/19/first-annual-report-reveals-lived-experience-of-queenslanders-with-disability/

Please email inclusivefutures@griffith.edu.au for a PDF copy of the dashboard (see below).

Image 1: Left: IFRD Researchers Kelsey Chapman and Dr Camila Shirota stand in front of the Queensland’s Disability Plan pull up banners, Top Right: Craig Crawford MP delivers the Ministers Address to attendees from the stage, Bottom Right: Panel 2 sit on the stage, including Katie Kelly, A/P Michelle Villeneuve and Jennifer Cullen with moderator Peter Tully. Bottom: Logos – Griffith University, Inclusive Futures: Reimagining Disability and The Hopkins Centre.

Image 2: Top: Panel 2 on the stage including Kevin Cocks, Katie Kelly, A/P Michelle Villeneuve and Jennifer Cullen with moderator Peter Tully, Bottom Left: Craig Crawford MP delivers the Ministers Address to attendees from the stage, Bottom Right: Mathew Ames sit in his motor chair and addresses the audience. Bottom: Logos – Griffith University, Inclusive Futures: Reimagining Disability and The Hopkins Centre.

Image 3: The Sunshine Troupe performing a western style line dance on stage at the Australia’s Disability Strategy Queensland Forum. Dancing in time to the music, the troupe are wearing western attire, consisting of black jeans and boots, shiny gold belt buckles with longhorn bull head and fringed or embroidered collared western style shirts and black cowboy hats. Bottom: Logos – Griffith University, Inclusive Futures: Reimagining Disability and The Hopkins Centre.

Below: The Queenslanders with Disability Dashboard infographic

SUPPORT FOR STUDENTS WITH A DISABILITY

This scholarship supports a commencing student with a disability, who is experiencing financial hardship and/or educational disadvantage.

• Targeted: to commencing students with a disability.
• Value: up to $20,000
• Level of study: Undergraduate
• Apply by: 4pm Monday 19 June 2023

APPLY NOW!

https://www.griffith.edu.au/scholarships/scholarship-listings/matt-levy-inclusive-futures-scholarship

More information: inclusivefutures@griffith.edu.au

Inclusive Futures: Reimagining Disability and Disrupting Violence Beacons, Griffith University together with the team from Sport and Gender Equity @ Griffith (SAGE) presented a panel discussion about inclusive sport at the Sports and Social Justice Symposium on Friday, 2 June, hosted by the School of Health Sciences and Social Work.

What can sport and exercise do for social justice, human rights, and social inclusion?

This Symposium brought together some of Griffith University's most talented interdisciplinary researchers, partners, and alumni to amplify the national and international potential of sport and physical activity for social justice. Featuring a special guest presentation by University of Melbourne Fulbright Future Scholar Dr Kalyn McDonough, Symposium participants explored ways that Griffith University's existing international calibre research in exercise science, social work, sport development, social justice, tourism and leisure, sport management, disability rehabilitation and inclusion, and violence prevention can converge to promote health, wellbeing, and justice across diverse communities in Australia and internationally.

Building toward the Brisbane Olympic Games in 2032, this was a key opportunity for all interested staff, students, alumni, and partners to generate new interdisciplinary connections for community benefit and impact.

Panel

The panel included Dr. Georgia Munro-Cook PLY, Matthew McShane PLY, Glen Woods, Dr. Diti Bhattacharya, A/Prof. Popi Sotiriadou and Prof. Simone Fullagar.

Event aims

• Developing principles for high impact interdisciplinary research in sport for social justice
• Promoting connections, collaboration, and strength across SHS and the university
• Generating a collaborative vision for future research in sport for social justice
• Developing a foundation to guide future research
  
  

Audience and stakeholders

• Staff, Faculty, Students, and alumni in School of Health Sciences and Social Work
• Related research concentrations and individuals across Griffith University
• Existing and prospective community and industry research partners and collaborators
• Prospective higher degree by research candidates
  
  

Inclusion and Inclusivity in Sport: Challenging Inequities?

• What is sport for social justice?
• Excellent and equitable approaches to promoting sport and physical activity across the life course
• Human rights and sport: Challenging inequality, exclusion, and the “isms” (racism, sexism, ableism, homophobism, heterosexism, ageism)
• The Good, the Bad, and the Ugly: Do large scale sporting events increase violence and disadvantage?

Thank you to Kelly Clanchy and Paul Harris (organisers) and the panel for hosting a most impactful and interactive session that was enjoyed by all.

An accessible recording of this symposium will be available shortly - please check back soon for the link.

FIND OUT MORE:

Inclusive Futures: Reimagining Disability: https://www.griffith.edu.au/research/inclusive-futures-reimagining-disability

Disrupting Violence Beacon: https://www.griffith.edu.au/research/disrupting-violence

School of Health Sciences and Social Work: https://www.griffith.edu.au/griffith-health/school-health-sciences-social-work

SAGE: https://www.griffith.edu.au/griffith-business-school/departments/tourism-sport-hotel-management/sage-at-griffith

CONTACT:

s.fullagar@griffith.edu.au or alternatively inclusivefutures@griffith.edu.au

Author: Dr Chris Edwards, Adjunct Research Fellow

The concept of neurodiversity which celebrates the range of natural brain variations holds great importance for me as a neurodivergent individual. Neurodivergence refers to brain functioning that is different from the majority and encompasses conditions such as autism, ADHD, and dyslexia. The concept of neurodiversity challenges societal norms that have historically stigmatised neurodivergent people. In this personal narrative, I will explore why it is crucial for universities to create inclusive environments that accommodate neurodivergent students and staff.

Higher education is increasingly attractive to neurodivergent individuals due to better career prospects, increased earning potential, and improved well-being. However, universities often lack the necessary support systems for these students, resulting in unsatisfactory experiences and higher dropout rates. These experiences also apply to neurodivergent staff, staff who are often well placed to support these students.

As a neurodivergent individual, I understand firsthand the challenges posed by the physical environment of university campuses. Noise, crowded spaces, unpredictable routines, and sensory overload can have a significant impact on mental health and well-being. Moreover, societal barriers and a lack of understanding and support for hidden disabilities hinder effective engagement in higher education.

To create inclusive environments, universities should involve individuals with lived experience in the design or redesign of spaces. Flexibility and adaptability are key, allowing for varying sensory needs. Modifications do not have be expensive - simple changes like reducing visual clutter, modifying lighting, rearranging furniture, and establishing sensory-friendly spaces can make a significant difference.

Greater understanding and awareness of neurodiversity are essential across the university community. University-wide initiatives, workshops, and training programs can promote diversity, educate individuals about different lived experiences, and provide additional psychological and social support for neurodivergent students. Online social options, mentorship programs, and communication aids can also enhance their university experience.

Inclusive teaching practices, such as Universal Design for Learning (UDL), can foster a more inclusive learning environment by promoting flexibility. By emphasising strengths and reducing the need for a formal disclosure, UDL benefits both neurodivergent and neurotypical students. Modifications such as structured learning opportunities, flexible learning methods, clear instructions, and providing learning materials in advance can make a positive impact.

Creating inclusive university environments for neurodivergent individuals is crucial for their academic success and overall well-being. Through embracing neurodiversity, universities can provide the necessary support and accommodations. Collaboration, awareness, and inclusive practices can pave the way for an educational landscape that values and celebrates the unique contributions of every individual.

Find out more about Dr Chris Edwards:

https://orcid.org/0000-0002-0617-674X

Read Dr Edwards’ latest publications:

'Exploring Identity Importance for Autistic Adults and Associations with Disclosure Experiences: A Brief Report'

https://www.liebertpub.com/doi/10.1089/aut.2023.0005

'Using Experience Sampling Methodology to Capture Disclosure Opportunities for Autistic Adults'

https://www.liebertpub.com/doi/abs/10.1089/aut.2022.0090

Image: Professor Tamara Ownsworth, Research Director, The Hopkins Centre together with Julia Robertson, Hopkins Centre Ambassador and Griffith Alumni.

On average each day, 6 Australians are diagnosed with brain and other central nervous system cancers and 4 will die from such diseases. Brain tumour broadly encompasses three subtypes: benign (non-malignant) tumor, lower-grade glioma (less aggressive initially, but risk of progression or recurrence over time) and high-grade glioma (malignant). Compared to other cancers, people with brain tumour typically face greater disease burden and have the largest lifetime cost per person.

Individuals with a brain tumour of any kind experience considerable stress related to their diagnosis and complex neurocognitive impairments which significantly impact their mental health and that of their caregivers. Yet, there is minimal investment directed towards psychosocial care and a lack of research on ways to improve the well-being of these individuals and their families. Current statewide services available for people with cancer in the Queensland context include screening for distress and the delivery of up to five telephone-based support sessions with a nurse counsellor or psychologist. However, these services are not targeted to the specific needs of people with brain tumour who require an extended and specialised psychosocial intervention to address the complex cognitive, behavioural, social and emotional consequences of brain tumour.

In a major step to address this gap, Griffith University and Cancer Council Queensland (CCQ) collaborated in 2010-2013 to conduct the first clinical trial of psychosocial support for people with brain tumour; the Making Sense of Brain Tumour (MAST) program. Delivered face-to-face in people’s homes, this 10-session program (1 session p/w) was found to significantly improve mental health and quality of life (QoL) for people with brain tumour relative to standard care. https://pubmed.ncbi.nlm.nih.gov/25251838/

Our MAST research informed international palliative care guidelines, with the European Association for Neuro-Oncology rating the evidence for the MAST program as higher in quality than pharmacological interventions for mood disorders. Yet, barriers associated with face-to-face therapy in a clinic (e.g. transport, distance, debilitating symptoms) restrict people’s ability to access the MAST program. We therefore trialled the feasibility of remote delivery of the MAST program through the use of video conferencing. As part of a work-integrated learning project, Julia Robertson worked with Professor Tamara Ownsworth to develop a person-centred guide to using Zoom videoconferencing.

Funded by a NHMRC Partnership Grant with Cancer Council Queensland and Metro South Health, we evaluated a telehealth version of MAST (Tele-MAST) with 82 people with brain tumour and their family caregivers. Compared to standard care (5 sessions of telephone-based support), Tele-MAST was four times more likely to reduce levels of depression, and also improved quality of life. Due to the established effectiveness of Tele-MAST, we are now evaluating the nationwide implementation of our program through a MRFF Brain Cancer Survivorship Grant. People living anywhere in Australia who have access to an appropriate device and internet can participate.

People interested in taking part are encouraged to read more about the study and express their interest through the following link. We are recruiting until August 2023.

https://healthcheck.griffith.edu.au/brain-tumour/

Carlo Alimboyong, is a 2013 Griffith graduate and now Operations Manager and Exercise Physiologist working in disability sport. As a member of Inclusive Futures: Reimagining Disability, Carlo advocates for physical activity and exercise to people of all abilities. He is passionate about creating a community, particularly for those that are disadvantaged and aren’t aware of the benefits of exercise. The results and impact that he and his team has created is continually growing and he is eager to revolutionise the way we look at health.

Carlo works predominantly with a vast array of disabilities, including; Neurological Disorders such Multiple Sclerosis & Cerebral Palsy, Physical Disabilities such Amputees, Meningococcal, Developmental Disorders and much more. The particular interest that Carlo facilitates when working with people living with a disability is simply working together to achieve their goals. Some of these goals have included becoming better at home-gardening, to wheelchair basketball, to goals of participating in the Paralympics.

We asked Carlo about sport and spinal health for people with disability and what the benefits are. Read what he had to say below.

My name is Carlo Alimboyong, and I am an Exercise Physiologist and Operations Manager at Atkins Health. I am passionate about community participation at all levels in our society. Disability sport is something I have been involved with over the last 5 years. Generally speaking, the involvement and awareness of disability sport is quite low. However the positive outcomes that I see from people with disability (PwD) participating in community sport is of high regard! These benefits are seen in both social and physical outcomes. I am an optimist that endeavours to navigate barriers so that I can influence as many PwD to achieve their goals and a better quality of life through sport. For spinal health specifically, positive benefits can result from training for sport.

Social and Physical benefits

The social benefits from community sport range from enhancing mood, reduced incidences of depression and social embeddedness. Experiencing this firsthand, I can say that the uplifting comradery and support that each individual offers is second to none. Being a part of disability sport is truly inspiring.

One would assume that a PwD participating in sport has exceptional physical abilities… this is not necessarily the case! We strive to encourage people of all abilities to participate, but also allow them to understand that training is an important habit to develop to compliment participation. Training is where the real benefits are achieved from. In regards to spinal health, specific resistance training has been shown to improve bone mineral density which is important for preventing any fractures. Resistance training will also improve muscle size & strength, which has shown to positively impact posture, reduce pain and enhance mobility.

Why is participation low?

Individuals face many barriers in being physically active. This can include lack of transport, impairment type, lack of trained volunteers and appropriate programmes and lack of information received from therapists following discharge. Yet it is evident that PwD are eager to participate and improve their health and physical function. However, participation at great levels will only occur if practitioners reduce the barriers to access, provide relevant training to staff and volunteers, educate their patients about the importance of physical activity post discharge, and create tailored programmes in safe and accessible community facilities.

What can we do as a society?

At a community level, there are many supports you could access. This includes your council, local sports teams (it isn’t uncommon for a local club to have a disability team), local area coordinators/support coordinators and allied health professionals.

At a macro level, be sure to keep up with organisations such as Sporting Wheelies and Wheelchair Sports Australia (WSR) on news and events. In the upcoming years leading up to 2032 Brisbane Olympic and Paralympic games, there will be great emphasis on participation in sport and recreation.

What can Atkins Health do?

Atkins Health is a proud supporter of training PwD for their spinal health as well as disability sport. Some sports that we have been involved for training include:

• Wheelchair basketball
• Disabled surfing
• Disability sailing
• Para-powerlifting
• Fun-Runs
• General Fitness

Atkins Health prides themselves achieving results for their clients. If community sport participation is a goal of theirs then we will help support you in achieving that goal, from building capacity to navigating the correct activity in community for you.

Find out more about Carlo and his work:

https://www.atkinshealth.com.au/about-us/practitioners/carlo-alimboyong/

More Information:

https://www.atkinshealth.com.au/contact-us/appointments/

Get Social:

https://www.facebook.com/atkinshealth

https://www.instagram.com/atkins_health/

My name is Lisa and I’m a member of the Griffith University Inclusive Futures Reimagining Disability Engagement Council. It’s a position I love, because I get to work alongside other passionate people who also want to use their lived-experience with disability to create positive systemic change.

I acquired multiple visible and invisible disabilities in my early twenties including a brain injury and amputations. In my experience and without a doubt, it’s all of the things you can’t see, such as chronic pain and fatigue (plus other things related to living in this disabled body) that are far more challenging than my wheelchair, prosthetic or anything you can see.

When I left hospital, I couldn’t wait to start working again. Being productive, using my brain, creating something were all what I loved to do in my previous roles in advertising and media.

I went back to agency life for a while but knew it wasn’t conducive to my ‘new normal’ with disabilities so went out on my own. I had always spent and stil spend a lot of time hunched over a keyboard, which might not be great for my spine but my brain appreciates it. Moving periodically has been the key for me.

I started my business back in early 2010. With a background in business communications, I saw significant gaps in the market where industries could be better working with and serving the disability community. But despite my best efforts, few mainstream businesses wanted to listen.

When I’d enter a corporate environment, people would see my disability (usually my wheelchair) before they had a chance to hear what I had to say or how I could help their business achieve its commercial objectives.

This continued for many years and still happens today, but fortunately, to a lesser degree. Business leaders now understand the need for diversity and inclusion of disability in their content and practices. They are realising that it’s not just a ‘nice thing to do’ and socially responsible but the financial and economic benefits can also be great.

As a result, the same businesses and industries that once told me to go away and to stop dreaming are now the same ones asking me to come and consult to them on disability inclusion.

My husband jokes that I have a “spine of steel” for persevering with work over the years despite the initial rejections and blatant discrimination. But in all honesty, my spine and the muscles and nerves around it probably aren’t in the best condition – despite my vigilante efforts to keep my spinal health in check.

Even though my spine was not injured when I first fell ill and became disabled, I still have a lot of problems with it and am in constant pain.

My body is riddled with arthritis and I had my first hip replacement at age 27. I have peripheral neuropathy (severe nerve pain 24/7) in my remaining right foot and we can’t be sure that my legs are ‘talking to’ my brain properly (because of the brain damage). I often wake in a very uncomfortable position with my spine twisted and spend the day taking pain-killers.

To deal with the constant pain, I’ve found that keeping myself occupied (sometimes with work) or staying active has worked for me. I live near a gym so see my exercise physiologist there each week. Seeing my physiotherapist fortnightly for deep tissue massage, trigger point therapy or dry needling is also beneficial.

Pressure injury prevention has also been an important part of my life with disabilities. I acquired 3 pressure injuries in hospital, including one stage-4 that still causes problems now, nearly two decades after it has healed.

Unfortunately, I have acquired a few since leaving hospital but am far more aware of what to look out for and what to do. Part of this has been because of my ongoing work with public and private healthcare facilities, working with staff and helping to write educational material for patients about pressure injury prevention.

In my own life, I’m also conscious of what I can do with regard to lifestyle interventions to lessen the impact that disability has on me and my loved ones. I’ve consulted dieticians and a great Functional doctor who is also invested in my health holistically – including my spine.

Even though I can pinpoint very specific parts of my body that have been affected by disability (such as my amputated leg), disability affects the whole body and the whole person. Spine and all.

Visit Lisa’s website:
https://lisacox.co

Follow Lisa on social media:

Facebook: https://www.facebook.com/lisacoxwriter/

Instagram: https://www.instagram.com/lisacox.co/

LinkedIn: https://www.linkedin.com/in/lisa-cox-217588a/

Carol Taylor is an award-winning Lawyer and the world’s first Quadriplegic fashion designer and disability advocate. She is a Partner (Head Design and Production) of Christina Stephens, Australia’s most recognised adaptive clothing label, conceived by business woman and founder Jessie Sadler.

In 2001 an accident left Carol a quadriplegic. Carol’s spinal cord was severed resulting in complete paralysis from the chest down. Despite having only some arm movement Carol spent years teaching herself to use her paralysed hands. With the help of some specially made tools, Carol found a way to draw, paint, and create. Carol is now an award-winning artist and fashion designer, having shown her inclusive and adaptive designs at Australian Fashion Week.

Being a very businesswoman, spinal health is important to Carol, who occasionally suffers tension headaches and migraines, most often caused by stress. “I have a weighted eye mask; it can be warmed or chilled and I use this from time to time. Overwhelmingly for me though, the best remedy is physiotherapy, followed by resting in a dark room. I used to suffer chronically from migraines before my spinal cord injury, interestingly I have far less since I severed my spinal cord. I wonder sometimes that maybe the message can't get through to the brain so when I do from time to time have one it's probably pretty bad.”

When it comes to keeping my spine in check, I swear by physio twice a week. It's an essential part of my well-being, and I rely on it for proper functioning. I know that exercise is also critical for spinal health. Although I've been longing to attend Making Strides [an exercise physiology and allied health service] for a while now, various medical issues, coupled with the ongoing Covid situation, have hindered my participation. Thankfully, I've got things under control now, so I'm hoping to start there soon.

Now when it comes to adaptive clothing, I may be totally biased, but I strongly believe that it plays a crucial role in promoting spinal health. There are the obvious mental health benefits of feeling empowered and happy within yourself when you know you look hot and have the choice to wear what you want, not just what you're given. Then there are the physical benefits of clothing designed to meet your needs especially when it comes to things like pressure sores. That's why we developed our special seamless “bucket bum" pants, which allow customers to freely wear what they want without the fear of nerve pain or pressure sores. Pressure sores are incredibly dangerous, and their consequences are often underestimated. Our seated jeans have undergone extensive textile research and development to create custom denim blended with soft and sustainable fabrics like Lyocell. This design helps prevent pressure injuries by providing a soft internal surface.

A similar approach has been taken for individuals who use prosthetics. We carefully listened to their needs and concerns and recognised that durability and sustainability are significant issues due to the friction between prosthetic and fabric. Moreover, temperature regulation becomes problematic for those with limb loss, and they also require access to adjust their prosthetic as needed. Taking our customers' feedback into account, we have developed a unique and innovative approach to our prosthetic denim designs, aiming to address these challenges.

Designing adaptive clothing involves considering various aspects. Sensory-friendly fabrics are not only crucial for individuals with sensory issues but also for those who experience sudden and extreme fluctuations in blood pressure caused by their body's inability to temperature regulate. People with dexterity and mobility issues appreciate features like pull tabs and easy access. The design process goes beyond simply replacing buttons with magnets, since magnets may not suit everyone. Our designs are deeply influenced by the lived experiences of individuals with disabilities, including my own, as well as the perspectives of our customers. We genuinely listen to their feedback because, ultimately, they are the ones we design for.

We take pride in incorporating the lived experience of disability into our designs, and here's an interesting trivia fact that the general public may not be aware of: Officer Fitzroy Somerset, who later became Lord Raglan, was among the wounded in the Battle of Waterloo and lost his right arm. But this guy wasn't about to let this setback cramp his style. With his trusty tailor by his side, they developed a new shirt design. Instead of the traditional sleeve set into the armhole, they created a sleeve that extended diagonally from under the arm to the collar. This Raglan design allowed for greater freedom of movement, enabling Lord Raglan to dress easily and wield his sword effectively.

While we don’t see many folks swinging their swords these days, the enhanced mobility provided by this design remains relevant, especially when considering the physical exertion required for individuals who use manual wheelchairs constantly. For this reason, we have fully embraced the raglan sleeve design in our Unwrapped Collection.

More information:

E: Carol@christinastephens.com.au

W: https://www.christinastephens.com.au

Follow Christina Stephens on social media:

Instagram: https://www.instagram.com/shopchristinastephens/

LinkedIn: https://www.linkedin.com/company/christina-stephens/

Facebook: https://www.facebook.com/shopchristinastephens/

Hi, my name is Lindsay, I was born and grew up in Brisbane, Australia and obtained my spinal cord injury several years ago, which sees me getting around on four wheels instead of two legs. My injury hasn’t stopped me from making the most out of what I like to call "my beautiful life".

My journey began on the last day of grade 12, at the age of 17 when I went for a celebratory swim at Southbank, in Brisbane and broke my neck at vertebrae C5. Over the last 29 years, I have done public speaking at universities, conferences, fundraisers and within healthcare settings. I also work part time, enjoy travelling, attend the gym and volunteer as a peer support mentor for the newly injured and their families. I am also a passionate advocate for disability awareness and my goal is to help people and their families who are in similar situations. Recently, I started up a social media platform, including a website, podcast, and YouTube channel. Allowing me to peer support in a different manner. Honestly, it has opened more opportunities and more goals to work towards!

During my rehabilitation I took part in weekly gym sports activities – including 10-pin bowling and rugby! Not only did I do physiotherapy to get my body moving, but I also wanted to become more independent.

I remember back when I wanted to go snow skiing six months after my discharge, my physiotherapist was fully supportive and advised on what sort of equipment I would need to have to continue with my love of travel/adventures. To open up my sporting options, along with several other patients, I was invited to play weekly quad rugby games (with a stop at the Maccas drive through for a cheeseburger and sundae before heading back to the Spinal Unit!).

Is sporting activity achievable?

Hell yeah it is! Video games, gym, home workouts, sporting shooters, quad rugby, basketball, adapted sailing, surfing, drone, fishing... the list is endless! It's also a great way to meet new people, challenge yourself and learn new life skills. Not only does daily exercise help my physical body, but my attitude also gets a good workout – I find this refreshing!

Over the years, I have noticed at the gym, the clients have a more positive attitude, and it encourages everybody to push themselves even further, gaining more confidence and forming new relationships along the way.

My physiotherapist has now provided a stretching program for my support workers, which I use daily. I find that combining these with more intensive work outs, either at the gym, Making Strides (or a similar organisation with a qualified exercise physiologist) provides my body with opportunities to stretch and use the muscles I wouldn’t normally, which works a treat!

Travelling to Making Strides is a major activity just in itself! I have to travel on several types of public transport in just one day, then a two-hour intensive program, followed by the return journey. When you know no different and you have a goal, you do what is required. My motto is “improvise, adapt and overcome”.

During my time attending these sessions, I found the benefits of strength and stability. I go by the theory of use it or lose it! Some of the immediate benefits included better night sleep and a willingness to increase my activities and independence. Throughout the year, I chat to my exercise physiologist, on my travels, daily tasks etc… And together we work towards these goals. They range from swimming 25 years after my accident, travelling on an aeroplane, helicopter through to watering the garden and dragging in the washing. My poor carers are forever collecting pegs off the ground!

Participating in gym activity is not just about getting fit and healthy, it works for everyday use and is allowing me to cook BBQs with my support workers and sharing this on social media. My EP (exercise physiologist) and physiotherapist stretches/exercises also assist with my spasms and general body tensing during the winter months where I am affected by the changes in temperature.

As a result of my high-level spinal-cord injury, my temperature regulation is severely affected. I need extra layers, which is an added weight to my body. Therefore, these also help to increase my strength and stability, which is paramount for my independence. Unfortunately, I recently broke my leg in a tubing accident and spent two months healing in hospital. My immediate goal was to have the cast removed in six weeks, and that was achieved! Following that, I needed to regain strength, stability, and a range of motion; that was my second major goal. But I have started from ground zero, after spending several weeks with limited mobility. We are achieving the goal differently, but, ending up with the same result. When the warm weather returns, hydrotherapy will be in full swing, and I will be completing as many laps as possible.

I can’t believe how much the body changes and can re-adapt just as quickly!

Listen to Lindsay's podcast series on Spotify: https://open.spotify.com/show/2SJ4HYn6lqVJ6tGrxLY7p1

Spinal Health Week (22 – 28 May 2023) is Australia’s longest-running national health awareness campaign dedicated to improving the spinal health of Australians of all ages and abilities.

National SHW2023 is tackling spine related headaches head-on by increasing awareness of the painful condition and improving spinal health through effective, low risk, drug-free solutions that limit the impact headaches have on the quality of life of over 46% of Australians.

Maintaining good spinal health and integrity is of vital importance for many THC/IRFD members and subscribers. So, we decided to ask some of our wheelchair-using members to share what they do to maintain good spinal health and improve overall wellbeing this #SHW2023.

See what they said below!

JUSTIN HUA: CITIZEN SCIENTIST, THE HOPKINS CENTRE & HABITEC

My name is Justin, and I am a Citizen Science Ambassador of The Hopkins Centre and Inclusive Futures: Reimagining Disability, at Griffith University.

I was involved in a car accident in 2014, which left me with a C3 complete spinal cord injury. I am paralysed from below my shoulders and spend quite a lot of time using my computer with a Quadstick in my bed, as well as an hour every day with our two dogs Rex and Tofu. When I go out into the community, I have a carer, friend or parent with me, and use my manual wheelchair.

Whilst I have a spinal injury, maintaining spinal health is still very important for overall wellbeing. To manage the common stiffness, tension and pain in my neck and shoulders, I receive fortnightly physiotherapy­ sessions – during which my physiotherapist helps me with deep tissue massage, spinal joint and rib cage mobilisation, as well as deep breathing exercises.

The deep tissue massage, in my opinion, is very effective at managing the stiffness, tension and pain in my shoulders and neck. The stiffness and pain occur frequently, but comes on gradually, and I usually don’t realise until it gets quite bad, resulting in headaches and low mood. My neck and shoulders become sore and stiff, as I rely heavily on these muscles for using the quad stick adaptive computer controller, breathing, as well as maintaining balance when travelling. Cold weather can also add to this issue – as I am involuntarily tensing up or shivering.

Spinal joint mobilisation also helps with neck stiffness and any pain from a pinched nerve. Additionally, sideways neck stretches and using a massage gun can be quite effective.

Rib cage mobilisation and deep breathing exercises help with maintaining and improving lung capacity and function, which can stiffen over time, making breathing difficult, reducing stamina when in the wheelchair and reducing sleep quality.

Other passive exercises and stretches are performed by my carers, who help to maintain mobility and flexibility in joints, including my shoulders, hips, ankles and fingers. These passive exercises help to make transferring and dressing easier, as well as preventing skin damage or pressure injuries, due to bad positioning caused by stiff tendons and joints. I have also found over time, that my fingers and thumbs tend to curl up, causing them to dig into whatever they are resting on, which also places extra pressure on the fingertips.

Additionally, pressure injury prevention is very important, as they can occur very easily, and take weeks or months to heal, leaving painful scar tissue, which can sometimes lead to infection, if not cared for correctly. Advice received from staff at the Princess Alexandra Spinal Unit is very useful; including not to wear excessively tight or loose clothing, to be careful of seams, and to use pressure relieving gel pads on arm and footrests etc.

Some other issues I manage are pressure sores and acne. These can be a problem, as I spend a lot of time sitting up in bed to use the computer, and the QuadStick rubs on my chin. I have found using an electric bed from Liberty Healthcare, combined with a Talley Quattro alternating air mattress, as well as Heelift convoluted suspension boots to be very effective for preventing pressure sores. I have tried using sheepskin boots in the past, but it was not enough, and a pressure sore formed on my heel in the span of about six hours between lunch and dinner.

When going for car rides for more than two hours sitting in the passenger seat, I use a gel travel cushion, as I am a very slight build. For longer trips, such as on an aircraft or longer car journeys, a Roho cushion works a lot better. Be sure to deflate the Roho air cushions a bit before using them on a plane, as the cabin pressure can cause overinflation and leakage.

To manage acne, I have found using an exfoliating scrub on the skin around the neck and shoulder area, as well as wearing cotton shirts that allow the fabric to breathe, and get washed daily, has helped quite a lot. For the more problematic blemishes, creams with benzoyl peroxide like Benzac or Epiduo (which is also a retinoid cream) are good, but be mindful, as they can bleach clothes and bedding. Flipping the bed sheet one day, and washing it the day after, as further reduced skin concerns.

Lastly, I have found lack of water and sleep, as well as positioning and posture when using the power wheelchair and the Quadstick computer controller can contribute to headaches.

If I have not had enough water to drink on a day out, or I am lacking sleep due to various spinal cord injury related issues, it seems as though headaches and muscle pain are much more noticeable.

Also, if my body is not positioned correctly in my chair or bed, I will end up straining my neck and shoulder muscles to stay balanced or to reach the joystick or controller. The sustained straining of those muscles slowly lead to cause headaches until the tension can be relieved.

Headaches can also be caused by eyestrain from the screen being too bright, not enough light in the room, uneven light in the room (such as an open window only on one side) or not sitting up enough so that the eyes are straining to look down at the screen.

I hope some of these spinal health tips have been helpful for others – and would love to hear other suggestions in the comments below. Cheers!