A tradesman reminded me how tedious it is being stuck indoors. It reinforced Emily’s independence after SCI as she left the house to catch a wheelchair accessible bus (M30) to Sydney University leaving me behind.
Spinal cord injury (SCI) isn’t a game but in an analogy it would be the snakes and ladders board game played in my childhood. Considering SCI there can be more snakes to slip and slide down than helpful ladders when manoeuvring towards a goal. The best ladder for us has been establishing some mentors. Our mentors are experienced carers and wheelchair users, they shed light on some complexities and the shortcuts that help life roll a little more smoothly. Mentoring is another word for friendship with a practical aspect to conversations, someone to bounce an idea off, someone to ask, someone to confide in or share in a joke.
It took Emily and I an hour to cross the Expo threshold because we couldn’t stop talking! It was a lovely opportunity to catch up with our friends at SCIA and refresh ourselves with their news, while becoming chummy with Charlie, a sleek black labrador service dog.
SCIA gathered service and product providers, support organisations and a range of equipment together into The Australian Technology Park, Sydney. Parking was free and we accessed the venue, Bay 8, with ease. There was ample space inside for this gathering of exhibitors, powerchairs, dogs, children, cafe and carers.
Emily had been asked to participate in the SCIA Exercise Rehabilitation Program demonstration at 11.45 and 2.30pm so we relaxed into our day at the venue. The SCIA Walk On Program “is an individually designed, intensive, activity based program that assists a person with spinal cord injury to improve and maximize their functional ability and lead a more independent life. Exercises are performed out of the wheelchair one on one with a qualified Exercise Physiotherapist or physiotherapist”
Emily thoroughly enjoys her sessions at Walk On, she gains from the positive energy, boosting her confidence and moral as well as benefiting from the practical therapy. It is also an opportunity to structure therapy ideas and re-energize rehabilitation goals.
We met so many friends we knew from Royal North Shore Hospital, Royal Rehab and other SCI organisations, networks and workshops, my voice grew horse! No one could escape the natural charisma of Duncan Wallace, the Executive Director at Spinal Cure Australia. Duncan is energetic, enthusiastic and engaging, he spoke to us with insight about his vision for spinal cure in Australia, he vocalized about the power of the group and the need to educate politicians, the need to speak as one so our voice is heard. See here. Like their Facebook page to follow their news.
My next stop was to meet the staff at IDEAS, Information on Disability and Education Awareness Services. Wow is the descriptive that comes to mind, one phone call to access assistance. Their newsletter is packed with information and with information comes choice, and choice matters! IDEAS NSW; “is a free telephone information service for people with disability, their family, carers and other supporters” – call 1800 029 904. Ask them questions, IDEAS give you the answers and you make the decisions.
I went on to meet Trudy Rice who helps arrange holidays for the disabled at Time Fly’s Travel. All services that expand the opportunities offered to people with disabilities must be embraced. I have St Petersburg and The Great Wall of China on my bucket list with Emily! I took away Cruising from Australia, Thailand and Malaysia travel brochures to read over coffee.
Carers NSW was also on my to visit list when I saw the Expo floor plan, I was delighted to introduce myself and received a warm welcome. I am becoming more aware of the wealth of newsletters available but actually most organisations are Online, as well as on Facebook or Twitter. The internet and social media is an interface that works well with isolated carers in rural homesteads or if carers are housebound with their role. The internet can be accessed at your convenience and information is updated so the latest news is at your fingertips i.e here!
Carers NSW; “is the voice of all carers in NSW. The vision is for family members and friends who provide care across the state to enjoy improved health, well-being and recognition by governments and communities.” See more here.
Bay 8 was filled with exhibitors, service providers and support organisations.. Emily and I found ourselves talking to company directors about products that may not be appropriate for her immediately but we are aware of them and their development so in future we can access these resources. Having the opportunity to see and discuss the available services and products is empowering. It broadens our horizon, expands our choices and will enhance Emily’s independence.
As a carer I am interested in products and SCI services because anything that promotes Emily’s independence – reduces my role, I enthusiastically embrace positive change, SCI service development and advocacy (individual and within organisations) because as a carer I want to be made redundant. My greatest hope is that SCI is cured, that improvements in SCI care offer people hope, that improvements in technology offer freedom from a life time of wheelchair use. I welcome SCIA Walk On Program as it improves functionality, develops strength, physical stamina and skills that increase Emily’s involvement in her everyday life, her studies, volunteer work, her sport.
Within the extremes of SCI there are many differences but we are one community. We have to come together to empower ourselves with one voice and we have to work together to facilitate positive, practical change in an aware and inclusive society. The SCIA Expo, in my opinion, was a rare opportunity to connect to numerous SCI service and product providers, SCI and Carer support organisations, to gain information that makes life easier, makes independence a reality.
We visit SCIA Walk On program regularly as Emily finds their physio, exercise regime very beneficial.