30 October, 2023
When and how did you get involved with Retina Australia?
When I was about 26 years old, 45 years ago.
I was diagnosed with Retinitis Pigmentosa (RP) at the age of 19. I had been finding I was clumsy in changing light conditions, e.g. going from light rooms to dark rooms etc. The first ophthalmologist was no help at all and didn’t tell me what was wrong but said “There’s nothing we can do for you”.
My parents sent me to another ophthalmologist who was furious when he heard about this. He diagnosed RP. When I got to him I said, “I feel like a blind person” even though I wasn’t blind yet.
What he discovered was that I had excellent central vision but 85% of my field of vision was gone, and I was legally blind.
I was a fine arts student and trained as a painter. Because my vision remained not too bad over the years, I had a successful career in antique dealing and restoration.
The ophthalmologist sent me to Vision Australia for a second opinion and the social worker there recommended I go to a meeting for people with RP being held in St Kilda Road.
The aim was to set up a group to advocate for people with RP and raise money for research. Leonie co-opted me onto the committee, and I ended up as the Vice President. I didn’t see myself as someone who would be good on a committee as I am dyslexic and would be no good at taking notes etc, but I ended up there for many years.
Not having a young family of my own, I didn’t have the same vested interest as many of the others on the committee, who were thinking of their children’s futures in relation to the work of the organisation. I saw the awful guilt that was suffered by those whose children had the condition.
But you’ve got to be in it to win it! So I joined, and got a great deal out of meeting others with the same condition as me.
In those days we used to run fundraising dinners with auctions etc. and hosts like Rod Quantock.
We once won a $5,000 grant from Tattersalls and I remember going out to Chadstone Shopping Centre to be presented with it!
After a falling out in the committee, I became the President. Leighton Boyd was a member of the committee at that time too.
What were the greatest achievements of your time at Retina Australia?
We were very lucky to have funding from the Cain/Kirner governments that allowed us to have an office staff member along with a psychologist called Myra Holmes, who provided great support to our members including visiting people with Usher Syndrome in their homes. Unfortunately with the change of government this funding was ended, and we could no longer offer that service.
What are the strengths of the organisation?
Over the years, we have been able to muddle along and still raise money for funding for research, with new people always coming along to help.
I think it is important to think about the future and raise money for research, but it is also important to deal with the here and now, and provide support to people where they are.
We used to run a regular youth group for people to meet up every couple of months with others in their situation. I remember going on a ski trip to Vision Australia’s ski lodge at Mount Baw Baw with a group of 17-21 year olds. I was probably about 35 at the time. I was struck by how in the evenings I needed to accompany these people to the public phone box outside the lodge as they really couldn’t see anything at all – my vision was much better than theirs!
We had people to assist with the skiing though, skiing alongside the young people to ensure that they were safe.
It was a great experience, exposing me to how other people live with the condition and how they cope with it.
What would you like to see for Retina Australia in the future?
I think it would be great to be able to have the services of a psychologist again, as the diagnosis is such a shock.
Obviously continue with the funding for research but being able to have some kind of focus on the here and now is important, maybe running a support group again for young people to meet in person would be a good idea.
It’s great to see the fantastic fundraising results we have achieved over the past couple of years.
I would like to say thank you to all those people who have been involved and stayed with the organisation for so many years, including of course Leighton and Rosemary, but also Kath Halbish, Carmel Georgalas, Mary-Anne Carmody and many others who have provided so much of their time and expertise to the group.
We owe these people a big thank you, and everyone really who has contributed in some way.
https://retinaaustralia.com.au/life-member-richard-rigby/
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