“Just because Barry’s got a set of wheels doesn’t mean his ears don’t work!” – #100days100stories

55-year-old Barry got a new lease on life when, with Scope’s support, he moved into his own home. Scope’s Stories Officer Nick Duquemin met Barry and his Support Worker, Judy, at Barry’s home in Hereford.

Here, as part of Scope’s 100 days, 100 stories campaign, Judy and Barry discuss life, changing attitudes and Barry’s beloved Hereford United FC. Barry has cerebral palsy and has complex mobility, learning and communication difficulties. 

Barry and Support Worker Judy smiling in his home
Barry and Support Worker Judy smiling in his home

Judy: Barry will have lived here 15 years this year. I’ve worked for Scope for 16 years – it’ll be 17 years this year. I was a support worker when Barry moved to Hereford. I wasn’t on Barry’s team, but I have known you since you moved to Hereford.

Barry: In 1999.

Judy: Barry has his own tenancy now. It’s a housing association property, so even if we stopped supporting him – even if Scope stopped existing – Barry would still have a home. He would just need to find another care provider.

He’s got security because he’s got a roof over his head, which he wouldn’t have if he were in registered care.

Barry: It [Grangewood] was a big place. Too big. This is smaller. Day-to-day activities.

Barry: Going to the Courtyard.

Judy: You like to go to the Courtyard [a theatre / café nearby], which is really handy for where you live. What do you do on a Saturday, when they’re playing at home?

Barry: Football.

Judy: Hereford United football ground is literally just across the road. Barry likes to go and watch the football, even though they’re not doing very well.

Barry: Yes.

Judy: You’ve got a t-shirt and a scarf – you’re a proper Hereford United supporter. You go to every home game.

Barry: [Unless] I’m on holiday.

Judy: Yes, you missed one because you were on holiday.

Barry: [My holiday was to] Southampton.

Judy: You use Revitalise holiday company. They provide supported holidays, so Barry doesn’t have to take staff with him; he gets supported there. So it’s a true holiday then – he gets to have a break from us and his housemates.

It’s really a holiday if you’re away from everybody. What else do you like to do? You love music. You go to a music workshop. Where did you go this morning?

Barry: Yam Jams [a music/rapping group for disabled people].

Judy: Barry goes to two music groups every week. You go to Yam Jams on a Tuesday and a music workshop on a Wednesday. You do get involved in lots of different things – you do different things with Echo [an organisation which runs activities for disabled people].

You’ve been swimming recently with the learning disability team – the learning disability team [at Hereford Council] have a physio and on a Thursday they organise activities to help with posture. You do trampolining as well with them, don’t you? Rebound therapy, they call it.

Barry: Yes.

Judy: It’s whatever takes your fancy really, isn’t it? Barry’s not really one for set routines, so it is whatever just takes your fancy at the time. You go and see shows at the Courtyard if there’s something on you like. Sometimes it’s just going out for coffee. There’s a lot of flexibility.

Barry

Flexibility

Judy: If there’s something you want to see at the Courtyard, you just ring me up or get the staff to ring me up and say, “I want to go and see this on this day”. When I’m writing the rota I can move the one-to-one staffing around to accommodate that.

So it’s Barry who’s in charge – Barry says when he wants the time, which is something he wouldn’t have had when it was residential care.

Changing attitudes

Judy: I think people are more aware and more accepting – they see you every day, don’t they Baz? And I think that’s definitely got to help the general public’s awareness. Seeing individuals rather than seeing people en masse on their weekly trip into town – a convoy of wheelchairs going down the street.

Whereas Barry can go into town whenever he wants to. It’s just him and his support worker and there’s no fuss.

I think it’s a lack of understanding. Sometimes people just don’t know how to cope – they see somebody in a wheelchair and they don’t know how to talk to that person.

I’ve said this often – just because Barry’s got a set of wheels doesn’t mean his ears don’t work, but people suddenly talk louder and slower. That’s better when people get to know you, but you still see it sometimes.

It’s frustrating if I’m out with Barry and someone talks to me rather than asking Barry. “What does he want to drink?” I don’t know, ask him!

Find out more about 100 Days, 100 Stories, and read the rest of the stories so far.