Paul Roberts hopes ‘Savvy Shuffle’ campaign will bring about change
Paul Roberts, a Hull man living with Parkinson’s, is behind the Savvy Shuffle awareness initiative(Image: supplied image)
A Hull man living with Parkinson’s who was recently turned away from an Old Town pub after being mistaken for “being drunk” is hoping to see an increase in understanding. Paul Roberts was upset to be refused entry by a doorman at the venue.
“It’s not the first time it’s happened,” said Paul, of Sutton. “I have to say that when the pub realised, they were really lovely, they’ve been so nice and I can’t praise them enough.
“The landlord was mortified when they saw a post about what had happened on Facebook.” Paul was diagnosed ten years ago this month with Parkinson’s and can have good and not-so-good days – when Hull Live spoke to him, we arranged to call him back after his medication “kicked in” and he felt better about chatting. He explained how the incident at the pub was not an unusual occurrence.
“It’s just the assumptions people make because of how you walk or how you sound,” he said. “I went into a pub one day and someone said to me, ‘you’ve had a good time’. I said, ‘I’ve not been anywhere’.
“I went to Zebedee’s Yard for an event and I needed the toilet immediately, as can sometimes happen, but all the toilets were occupied. I said to the lady on the entrance that I needed to go to a nearby pub to use the toilet and she said, if I left the venue, I couldn’t come back in – even though I explained about my situation.
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“I never did get back in to the event. It was my birthday as well.”
The latest incident happened after Paul, worried about a relative being in hospital, decided he would “go and have a quiet drink” and was “swaying quite badly” because of his Parkinson’s. “I explained the reason why to the doorman but I couldn’t make him understand.”
Paul said: “It’s about the fourth time it’s happened in different places. Five years ago I was in Whitby with two friends and it was a really hot night.
“I’d gone outside and left my phone and keys to the B&B where I was staying in the pub. The doorman presumed I was drunk and wouldn’t let me back in again; I was stood there for ages before my friends came out to find me.”
After the latest incident, Paul was reassured by the Hull pub that the security staff would be trained about possible medical conditions or hidden disabilities that might affect how a patron may present. He has also come up with a “Savvy Shuffle” campaign that he hopes will challenge assumptions and raise awareness of how Parkinson’s can affect movement, balance and speech – symptoms that are often misunderstood.
“It’s not just Parkinson’s,” Paul said. “There are people with MS, other issues that people suffer, and people need educating about it – just because a person is staggering doesn’t necessarily mean they are drunk.”
Paul’s friend Debra Dakeyne, who lives near Cottingham, has come on board with the Savvy Shuffle awareness campaign. She said: “Paul rang me about what had happened at the pub in Old Town.
“He said they’d stopped him and pushed him. He was obviously shaken up and shocked.
“His sister bought him a T-shirt as a bit of a joke and I said to him, I’m going to have a picture of that and put it on Facebook – it went viral and so many people were empathetic towards him.
“I said, we need to do something about this. Paul came up with the name Savvy Shuffle.
“A design for some wristbands to help raise awareness and spark conversations has been sent to the manufacturers but we’re not able to get them produced just yet. We’re going to some support groups first – Paul’s sister is a dance teacher and she does a Parkinson’s dance group, and we know some singing groups to approach – about interest for it and we’d need to get some funding; we’ve put a post out on Facebook about it.”
Debra said supporters of people with Parkinson’s reported on them frequently being judged unfairly, particularly in social settings, where symptoms such as unsteady walking or slow responses can be mistaken for intoxication or rudeness. “The campaign message is simple but powerful – ‘Not drunk. Not rude. Parkinson’s’,” she said.
Underlining the need for “greater understanding and compassion from the public”, Debra said: “This is about dignity. People shouldn’t be judged or turned away because of a medical condition. We want people to stop, think, and understand.”
She said supporters were already sharing posts using the hashtag #SavvyShuffle and she hoped the message would reach businesses, venues, and the wider public – encouraging better awareness and inclusivity. She said: “We think it would be really beneficial to link in with Pubwatch too, as the awareness side fits perfectly with door staff and venues.”
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