On the 7th of September was Duchenne Muscular Dystrophy (DMD) awareness day. To assist in spreading awareness about DMD, our clinical team put together a video that looks at the impact of DMD. If you didn’t see the video or want to understand more about DMD you can see it here
We are very grateful to our star, Ollie, who assisted us with photos and videos of his life. I first met Ollie when his Occupational Therapist shared his YouTube channel with me. I was instantly hooked and reached out to Ollie and his mum around sharing his experiences to assist in our clinical education. Ollie’s channel includes regular content that is very much about being a teen boy! He gives insight into accessibility and how he lives his life, but what I love most is that it doesn’t take long to realise he has a massive personality and a cheeky quirky sense of humour. There are also themes of ditch rivalry as his co-producer (AKA Shazz the carer) is a Kiwi and Ollie an Ozzie. Ollie has a goal to increase his YouTube following, so please check it out, subscribe and share for him! (https://www.youtube.com/c/OllieandShazz)
Working with individuals with impairments and educating at workshops and conferences around mobility and seating, I appreciate the insights from listening to first-hand accounts around the lived experiences people have. I can make assumptions or develop a level of understanding based on knowledge of human structure and function and the evidence gained as a clinician, however not having lived experience of being a wheelchair user, I value hearing people's stories. The ways people tell their story may come in many different ways, like Ollie and his YouTube channel, or from conversations to public performances. Each brings value based on the story tellers' strengths and preferred ways of communication. The motivation to tell one's story is just as varied. For some it may be part of the healing process, others may want to spread awareness or develop self-confidence. Why people tell their story, unless they include the why, is not for us listening to question. However, whatever the reason, the impact of the story can be significant. I once read on a social media page, “My suffering is not for your inspiration” and I can resonate with that on multiple levels and whilst I appreciate that the storyteller is not necessarily motivated to tell their story to inspire others, humans often do find inspiration in how others overcome barriers. When we actively listen to the story and engage and relate, I personally believe we can gain insight not only into the lives of others but also to our own values and perspectives.
Where has this reflection come from? Over the past few weeks, I have come across several stories told in vastly different ways which I would like to take the opportunity today to share.
I was excited to see Dinesh Palipana had published his book, “Stronger – How losing everything set me Free” I first met Dinesh when he was a guest speaker at a workshop that ILS Rehab hosted in Brisbane several years ago. He was a fantastic speaker who eloquently shared his experiences with us, from sustaining a spinal cord injury in a motor vehicle accident whilst a medical student, to the highs and lows of pursuing his goal of becoming a doctor, all whilst dealing with quadriplegia. I rushed out and purchased a copy the next day and it did not disappoint! I got my copy at Big W, you can also get it from Stronger by Dinesh Palipana (goodreads.com) Dinesh had the same easy-to-listen to style of writing, making it an easy book to read. It is Dinesh’s story to tell so I encourage you to get a copy if you want to hear his story.
Rodney sustained a spinal cord injury 31 years ago. He went on to become a world-renowned dancer performing with multiple dance companies. Rodney’s performance, Meremere, is a multimedia show where he shares some of his experiences from living rough on the streets of San Francisco to performing at the opening of the commonwealth games, from dancing with famous dance troupes to rediscovering himself and his journey back to New Zealand. Rodney uses dance, visual imagery, sound lighting and music to tell his story. Attending Meremere at the Sydney Opera house last week, I was captivated from the first Karanga (Call from an elder) that resonated through the audience calling, welcoming to the final bow. A fantastic performance that included story telling of experiences and audience interaction and raw emotional performances tying it all together. For more information about Meremere and Rodney, here is a link to a recent article promoting the Australian tour From homeless and busking to the main stage: Rodney Bell’s wheelchair dance tours Australia | Dance | The Guardian. Unfortunately, at the time of writing this, this show has finished touring, however with Rodney’s talent and gift of performance I would not be surprised to see a future production!
Rodney Bell: Dancing a Duet with a wheelchair | RNZ
The final person who I also find great to listen to is Jake Briggs, Jake’s latest podcast guest stars Dinesh and is a great listen! If you like Podcasts I encourage you to check out Jake! (LINK TO JAKES PODCAST) Keep Rolling with Jake Briggs on Apple Podcasts Keep Rolling covers a wide variety of topics from music, sport, disability, aboriginality, technology, the environment, society, culture, comedy, health, reviews and more!
Thank you to those who share their stories, I challenge readers to listen to a story next time you have the opportunity. Really listen and don’t just hear the words, but listen to the story woven beneath the words or actions.
Tracee-Lee Maginnity
Clinical Services Specialist
Permobil APAC
Tracee-Lee Maginnity joined Permobil Australia in July 2019, as a clinical education specialist. Originally from New Zealand, she graduated Auckland University of Technology with a BHSc (Occupational Therapy) in 2003 and has since worked in various roles related to seating and mobility including assessing, prescribing and educating. After gaining experience as an assessor and prescriber at Seating To Go / Wheelchair Solutions in prescribing for both disability and injury, she moved to Australia in 2011 to take on the Senior Occupational Therapist role in a custom moulded seating service. She then worked in clinical consulting and education roles until joining Permobil.
Tracee-Lee is passionate about maximising functional outcomes with end users and the importance of education within the industry. She has mentored many therapists interested in AT. Her experience includes working with complex postures to achieve custom outcomes. Tracee-Lee is also an international wheelchair rugby classifier where she enjoys the task analysis of wheelchair propulsion and functional capacity identification of athletes.