Marc Lupson, Heritage Project Development Officer, explains why this event is so important and the care being taken to prepare for it.
Since joining the Shine family as Heritage Project Development Officer back in February, my journey has been one of learning, appreciation, respect, and enjoyment in getting to know all of you out there!
Coming from a background of environmental and social grants management, as well as being an academic trained in heritage, my knowledge and awareness of spina bifida and hydrocephalus was limited to say the least.
So, being asked to design and deliver a permanent exhibition about the heritage of spina bifida and hydrocephalus is a big challenge.
Where do I start?
How do I choose what to put in it? How do I make it accessible and interesting to everyone? These were just some of the many questions that I asked myself on my first day!
What’s it all about?
The original idea was a smaller exhibition on the history of ASBAH/Shine to celebrate its 50th anniversary in 2016. However, there is a huge amount of wider history attached to spina bifida and hydrocephalus that can’t be ignored.
This discovery has paved the way for a successful £60,000 bid to the Heritage Lottery Fund to bring this wider history to life.
The history and contribution of ASBAH/Shine will be recognised as part of the exhibition, but to have it as the primary focus would not tell the full story, a story that needs to be shared and for people to learn about.
Why do it?
Having spoken to many people since I joined Shine, the question “Why are we doing this?” has been asked from time to time.
Doing an exhibition could be seen as ‘something nice to do’, but with no real significant benefits. So why do it?
I truly believe that it is a fantastic opportunity to do something unique which will greatly increase the exposure and awareness of spina bifida and hydrocephalus to the wider community, both in and outside the UK.
It is a heritage that has such depth but has never been looked at, and it is an opportunity to give the spina bifida and hydrocephalus community a voice.
On a personal level, I have learnt so much already and I have barely scratched the surface!
What’s going in it?
I am hoping to make the exhibition an informative and interesting experience for everyone, as it will be open for anyone to visit its permanent display at Shine’s Head Office in Peterborough. Some sections
will also be mobile and taken around the UK.
I am very conscious that it needs to be fully accessible to cater for many different audiences and I really want people to engage with it. I promise it will not be ‘medically focused’ and there will be things
to see, watch, listen, and to touch!
Once the exhibition is up, that’s not the end of it. History and heritage are constantly being written, so there will be additions in the future to ensure nothing is forgotten.