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When I first started working with SWD (just a couple of months ago) I was fortunate enough to spend the morning out with a volunteer crew off Coffs Harbour for a Winds of Joy Program.
Even though I am able bodied (or so they tell me), I still had trouble getting my sea legs while on-board Kayle. The crew however seemed to have no such problems (as would be expected) moving around the vessel, they all knew their jobs and impressively carried out their roles.
So when I discovered that volunteer James Hunter was vision impaired, I was suitably impressed with how much better he found his way around than I! James had also been living on-board Kayle as part of the Northern Campaign for almost 2 weeks.
The kids that joined us for the program that morning were mostly unaware of James’ vision impairment as well, and when told, they took some convincing! They didn’t believe him until the old ‘how many fingers am I holding up’ routine was played out a few times.
So when looking for inspirational stories to feature as part of my series about SWD Volunteers, James was an obvious choice. So I approached him to tell me about his journey.
In 1995 aged 30(-ish) James was driving down the freeway from Sydney to Canberra at night. It was then that he noticed a problem with his vision. After seeking medical assistance he was was shocked to learn that what he was experiencing (night blindness) was actually the first symptom of a genetic condition called Choroideremia.
Choroideremmia is carried by the mother and passed onto males, and the first signs often occur in childhood. It is a rare, X-linked recessive form of hereditary retinal degeneration that affects roughly 1 in 50,000 males. Night blindness usually being the first symptom, followed by peripheral vision loss, and progressing to loss of central vision later in life.
When I asked James about his family history with this genetic ‘grenade’ he said that until he was diagnosed his family had been unaware of it. That distant relatives on his mother’s side in Switzerland had earlier lost their vision as they aged however it had just put down to bad luck or age and that they were not aware of the condition.
James’ medical advisors estimated that he would most likely lose all his vision while in his 60’s or 70’s. However for James this came much earlier in his early 50’s in September 2015.
Over the 20 years from 1995 to 2015, James had come to terms with what was inevitable, and he knew that when the time came and he lost all vision, he would be forced into early retirement. James’ background was in Finance, and academia, he had been lecturing in business schools and managing business centres, and this was not an area that he could continue to work in without his vision, as teaching and research were his chore business.
The ‘End of game’ as James calls the moment he knew his vision was gone for good, occurred in September 2015. Suddenly he was thrown into early retirement and with only a small amount of ‘residual sight’ James started to seek out a sport or activity to put his time towards. James’ had sailed dinghies around Lake Burley Griffin as a teen, so getting back into sailing was an obvious choice. His brother in law who was into sailing suggested to James’ that he call David Pescud from Sailors with disABILITIES.
James says that he has always had a competitive streak so getting back into sailing became very rewarding, and a pillar of life for him. And it didn’t take long until he was racing competitively with the SWD crews, taking part in the Land Rover Winter Racing Series in 2016 and the Twilight Racing in the summer of 2016 and again now in 2017.
As James became more familiar with the boats he decided to become a volunteer with SWD. He now takes part in the the Wind’s of Joy Program on Sydney Harbour every Thursday. He usually does 2 programs in a day and then stays on for Twilght racing until 8.30 pm. On these volunteer days he leaves home at 4.30am and gets home around midnight.
What he didn’t expect when he got back into sailing was the enrichment felt by volunteering with the kids. So much so that he has now been included in the ‘Wind’s of Change Youth Program’ which is an 8 week program for teens that are seen to be ‘falling through the cracks’ in some way. Being an 8 week program it is a more focused and concentrated engagement with these kids. They are given the opportunity to find a new skill set by being introduced to something completely out of their comfort zone.
James says that these kids are very raw, and taken into an unfamiliar environment, but the program is all about improving self-confidence, giving them options and hope. It is basically like a metaphor for life, it gives them both sailing and interpersonal skills. Even doing things like having to catch the train to the city, which was completely out of their comfort zone. And by the end of the 8 week program these kids are taking the crew sailing.
He says that it is also good for these kids to see someone with a disability working alongside them as a mentor. It shows them that anything is possible and for James the experience is very rewarding.
When I asked James about finding his way around the different boats, he laughed and said well he is very familiar with Kayle, but put him on another boat and it takes him a while to get it mapped out. It’s all about ‘mental memory’. When I lost my sight, I just found I had to rely on my other senses, I had to adapt and find new ways to do things differently.