BLOG PIECE - Written by Jane Green MA Ed., 2nd April 2022
April 2nd Event
#AutisticAcceptance Health, Social Care – Symptomatic Hypermobility
Our event for raising acceptance for Autistic Health and Social Care Support started in Crawley Mall, with the wonderful Deputy Mayor Morgan Flack and Crawley marketing whizz Emma, who was delightfully helpful and keen to help our voices be heard.
Early morning on a very crisp, cold day, peering out for snow blizzards on the way to the mall - I warned everyone I might get lost despite instructions! True to form I did, but so did the Deputy Mayor and Emma!
We all ended up on 3 levels of the Mall directly above or below each other in the end.
After filming, we met up with long time SEDS Member Tania, who we previously helped fund some counselling training, and is now a trained counsellor.
You can find her business here www.spacetoflow.co.uk
True to form, our 'quick chat' was elongated to a couple of hours!
Regalvanised after resting, our SEDS IT Guru , Greg, drove us to Brighton.
I suffer from the cold, but just as we started speaking in front of the bright Palace Pier with the Mr Mayor, Councillor Alan Robins and Mayorall consort ….. the sun shone golden!
It was so bright we needed sunglasses!
We were delighted with the turn out from so many members who are ill and tired, and many passing public members, who were equally very interested in what we were doing, and signed up to our Facebook Group, as they had not realised some of the physical issues they had -Pain, stomach issues, IBS, allergies, jaw problems, tiredness, headaches, sleeping issues and (fibro pain) were key indicators to perhaps Ehlers-Danlos Syndromes/Symptomatic Hypermobility. This is key to understanding that we have double trouble not being believed or accepted in these areas from medical, social care, musculoskeletal arenas and the community.
After a successful event on the Pier with the Mayor, we all moved on to warm up in a delightful café, Crepe Affair, which a local Brighton member knew well.
Greg and I came on a bit later (as we managed to get lost again!) recurrent theme.
We were kindly bestowed with a plate of their mini chocolate pancakes, which was a lovely touch, and really made our day. Thank you again to them!
Due to daylight saving time, it was still not quite dusk as we left a very busy Brighton - and therefore unable to see the Pier and British Airways i360 in their full, golden glory - but we were happy with a very successful day. Plans are already in place for next year!