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To begin with, could you tell me, uhm, a bit about the nature of your disability, please?

I have, uh, Spinal Bifida – stroke - Hydrocephalus, which is water on the brain.

Cool. Ok. Uh, when and where were you born?

I was born in Boston. Uh, Wyberton West Hospital. And it's not far from Boston...in
Lincolnshire.

Whereabouts where you, uhm, where you living then?

I was living in...in - near Boston.

Near Boston. What did you parents or guardians do?

Uhh...pfff, they done a...number of things. My dad, uhm, my mum did a lot of land work. Uh,
my dad...has worked for a wood firm...has drove lorries. Uhm...uh yeah, mainly.

Do you have any brothers or sisters?

I've got two brothers, they're- which- who are younger than me.

Do you -do any other members of your family have a disability?

Yeah, my older brother has got, uhm, sort of...autistic spectrum...quite severe really. Uhm,
he knows us, you know, he always knows us, and me name, and that sort of thing. But as

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far as anything else goes, bless him, he's, uh, he’s quite backward, you know quite uh...he
struggles a bit.

What sort of medical treatment did you get when you were born? As far as you understand.

Phew blimey. I've had lots of...different surgeries. Uhm, legs and back and head
and...yeah, lots really. I used to walk a bit, uhm, when I was quite a lot younger, a lot
younger, at school. Uhm, but as years progressed, I just found it easier to get- to be in a
chair really, 'cos I kept falling over and...it wasn't safe really. So I used to walk with
callipers up to me chest...and they weighed more than I did (laughs). Basically, and it was
really difficult, so...

Yeah. What were your...parents' attitudes towards your disability?

Well, uhm...my mother had a lot of uh...mental health issues from...so...quite a young age,
sort of...30's I suppose. When she had -well, she had me when she was 19 I think...so sort
of 20's really. She had a lot of mental health issues...through the years. And uhm...we
didn't really see eye to eye much...cos uh, they were a bit...smothering really. I wasn't
allowed to be independent. That's why I was pleased to get out. I wanted to get away, you
know...cos I need me independence really.

What about your...brothers' attitude towards your disability?

Uhm, my youngest brother...he got spoilt, really spoilt. And we were always shov- my, my
older brother, he was in a lot of homes really. My mum, uh...had him - not, I dunno whether
it was fostered or adopted but...he was in a lot of homes from a young age. Uhm...because

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it was a bit difficult for- cos- obviously cos she had two of us together. And as the years
progressed I got a bit more independent anyway. And, uhm, but Adrian had really really
bad epileptic fits. Really severe, really...quite severe. And, uhm, it was difficult for her- uh,
she had her problems as well. And it was hard. I'm sure it must have been hard for
her...you know.

What's your earliest memory?

Of?...of?

Just your earliest memory from...

...When I was at school I was in hospital quite a lot. Uh...having different lots of surgery.
On my head, on my shunt. I've got a shunt, which brain- drains the fluid from my brain.
And I have to have that revised. I had it done last year actually. Quite poorly last year but
touch wood I'm fine now. Uhm, I - I had that done quite a lot. I missed quite a lot of
schooling...through surgery, but always bounce back. Yeah.

Were you - did you live at home throughout your childhood?

Uhm...up to 6 I did...yeah.

What – where did you go then?

And then I went to school in -near Nott-

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Was that a Boarding School?

Yeah. Uh, in Mansfield.

What was the name of that?

Thieves' Wood, then.

How did you find it there?

I loved it. Really loved it. 'Cos I wanted to be away. I didn't want- I didn't want to be at
home really. I just wanted me independence. Uhm...there was a lot of issues and I wanted
to be away from it, you know.

How long did you stay there for?

Until I was about 17?

Did you come home for holidays at all?

The main- the big ones, holidays. Uh, Summer, Christmas. Uhm...not Easter. The big
holidays I came home for, yeah.

What sort of...what sort of stuff did you do there? What did you learn, and…?

...I did me CSE's. English, uh, English. I didn't do Maths, cos I'm not very good at Maths. I

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dropped that. But I did me English and just -just passed it. Just. But, nah, it was alright.

Do you, uhm -do you remember any particular teachers or anything that you like there?

I do, yeah. Yeah, there was quite a few- quite a couple of- there was one or two I gelled
with. Uhm, couple I didn't, but, uh...it was mostly positive, yeah. It was alright.

How do you feel they... uhm...made you become independent? What what -how how was
that?

Uh...they weren't, uhm...they taught me things, obviously. Uhm, how to look after myself
personally and, well they did bits as well- you know they did bits obviously cos I was only
young but...they was –I was only very young, but I mean I've...I've just learnt over the
years, you know, to get on with it really.

Are you still in touch with anybody from there?

Uhm, one or two.

Cool.

Yeah.

Uhm, so, kind of like talking about your childhood...what sort of toys or games did you play
or do?

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Uhm...uh...I don't really remember, to be honest.

Fair enough. Any particular sort of foods you liked or...can you remember what the cookthe- the diet was like there?

I used to love me food at school. I really enjoyed it, yeah. I did enjoy it.

Class, yeah.

Cos we used to have a big dining room.

And the food was good?

Yeah. I found it all right, yeah. I found it good.

Was there anything you liked to watch on television back then, if you...?

Top of the Pops. I've always loved music from a very young age. I've grown up with mewell, I love music. Always have, always will I suppose.

Uhm, what was Christmas like, when you were a kid?

Uh, we used to have a….we used to have a big Christmas party at school. That was
always quite an event, it was nice. All my friends got together, it was lovely.

Do you have any memories of Easter or Bonfire Night from when you were younger?

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Uhm, we used to have the odd...I think one of the teachers used to do the firework nights.
Uhm, I don't- I don't remember much really….about Easter.

Were you raised with any particular faith?

C of E. We went to Church...once a month at school. We had to go once a
month...whether we wanted to or not, which was alright. It was ok, yeah.

Did you have any childhood illnesses, like measles or chickenpox or anything like that?

Ah, it's funny you should say that I...I don't remember...I don't remember having any. Not
that I'm really aware of. My brother had chickenpox I...I guess I must have had as well but I
don't know, I can't remember at all, I can't remember...anything like -I've had mumps...but
apart from that I can't remember.

How do you think -how do you feel that your...your disability affected your childhood?

Uhm, uh...I missed out on quite a bit of sch- a bit of schooling...cos of hospital. And I'll
never forget my shunt always used to go at Christmas. So we used to have our Christmas
party at school and I'll- well, I could count the times on one hand that I didn't miss it cos I
was always in bloomin' hospital. Just at Christmas it went, you know. And I was in hospital
for a couple of weeks...having that done. But ugh, it was so frustrating (laughs).

What hospital did you go to?

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Uh, Sheffield- big ha-. The big um Sheffield Children’s? Yeah, the hospital, the big one.

How was it being in hospital then?

It was alright, yeah. It was okay as far as I'm aware.

Cool. How do you feel about your childhood now?

I didn't enjoy my childhood...at all. Nah, I didn't. I got, uhm...I just wanted to be away from
home really. Uhm...

You preferred being at Boarding School?

Definitely. Furthest away the better really. Yeah, I didn't want to be at home, to be honest.

Fair enough. Uhm, so, what sort of things did you get up to when you became a teenager?

Oh blimey! (laughs)

And the next question is, 'Did you ever get up to mischief', so…

Oh I'm sure I did (laughs). Uhm...uh...nah, I never- I never really got in...to bother as such.
But we were just typical teenagers, you know. I never -I never smoked in- behind the bikesheds or anything like or...I never smoked, touch wood, so...I don't want to smoke!
(laughs).

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Yeah, you're wise I think.

No, I don't want to smoke.

Did you like reading...when you were...a child?

I'm not a very good reader, uh Justin. At all rea- uh, I can read very well, uhm, but it's the
old concentration. I can't...I'm alright on -probably alright on short stories. Uhm, but I
can't...sit for- I'm a bit fidgety I can't- I don't- I don't -can't sit for long, you know, still. I can't
sit still. I always have to be doing something, you know. Physi- sort of physical stuff.

I understand that, yeah. Uhm, do you ever go to the cinema?

Yeah, I'm not that big a fan. I've gotta really really want to see it...to go. Uh, it's not cheap
is it? Even- especially these days.

No, it's very expensive.

But, you know, I have been, but uhm, I'd sooner go to a- I'd sooner go to a, to some music
or...a football match or...I love football. I like a bit of football.

Do you remember any of the big news events from your childhood or teenage years?

Uhm...no I don't really. No.

Right. Did you ever go on holiday?

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Uh, yeah, from school. We used to go to Mablethorpe a lot, that was great. It was a...it was
a firm called- it was a...organisation called 'Toc H'?

Toc H?

Toc H. I dunno if you've heard of it. Oh, it's going back in- we're going back in the 60's
70's...now. They were an organisation that took, uh, disabled children...on holiday and
they had helpers and...I really loved that. I enjoyed that, yeah.

Did you ever go abroad?

No.

Not then?

No.

Did you...like going shopping when you were a teenager?

I enjoyed it but it was something I never really….did much to be honest.

Did you get pocket money?

A little- not much, a little bit. Yeah.

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Uhm, when you were, like, a teenager, did you have a boyfriend?

Uh, yeah.

Did you meet him at s- where did you meet him?

Met him at school. Had my first one at school. Uh...and I actually met him last year...again.
And it was brilliant.

Oh marvellous

...as if we'd never been apart. It was lovely. Col- Phil met him as well. Yeah, his name's
Colin Bell, from Derby. And it was great, really.

How did you come to meet him again?

Uh, we went to the, uhm, Motability Roadshow...in Peterborough? And we met...a few
friends from school, about 8 of- 8 or 10 of us. We went from here and they came from
there. Brilliant; Nottingham, Derby, Mansfield, that area. It was really good fun. Great fun
and Phil met 'em all. We got on like a house on fire it was lovely. It was as if we'd never
been apart.

Uhm, so...when did you leave school?

I left school in, uh, when I was 7- about 17. Uhm, I went probably about '65...until I was 17,
yeah.

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So, where did you- what did you do when you left school?

Uh, I left school. Uhm, and then I went to, uhm… Oh, when I -oh when I was at home, in
my childhood I...in fact I've...sort of...really remember, I used to go to, like, playgroups and
things, I forgot about this, that I really enjoyed. I used to go sort of, uhm...it was, we went
to a, I think it was a school...when it was closed, and we all met and they used to have a
lot of volunteers there, and they had the local...uhm, what they call borstal boys, who were
allowed out in the community...as volunteers, and I really really enjoyed that. I loved that. It
was really good fun and we used to do all manner of things.

And you got on well with the lads from the borstal?

Yeah. Yeah

So when you left school, where did you go?

Once I left school I went to, uhm, I went to a college...in North Wales.

Mmhmm. Can you remember the name?

Called Derwen. D.E.R.W.E.N...Training College.

And what did you do there?

And I did a thing there called Surgical Appliance. It was making callipers and...splints

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and...that sort of thing. And I really enjoyed that, I liked that.

Where did you live when you were there?

I lived there, at college.

What was- what was the accommodation like?

It was like a, it was like a, uh hos- uhm, uhm... like, we had sort of three other- two or three
houses, what we call… houses, with rooms and...bathrooms and...yeah. Communal.

Did you get on with the people you lived with and worked with?

Yeah. Mmm.

Uhm, how much choice did you have in that...as where you went?

I always stipulated that I wanted to be as far away as possible...from home. Always
wanted that. Uhm...but I didn't have a lot of choice of sort of places to go. I think this was
just ano- a just a, uh, uhm, one of the bigger ones that a lot of people went to, you know, in
North Wales, so...I went there.

How long were you there for?

About 2 years, 18 months, something like that. 2 years.

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Where did you come after that?

I came here after that. I was home for a while. You come in- I think -I think you could only you could only be there for 2 years anyway.

So it was a training college was it? Right.

Yeah. Yeah. 2 years maximum.

Ok, and then, so you left there, came- went home for a bit, and then came to Papworth?

Went home for a little while.

How was it being back at home at that time?

Oh no, I didn't like it. No, I didn't want that, uh. So, uhm, social work-

Was that an independence thing, or…?

Yeah. Yeah. I just wanted to be away really. With my friends and make friends and…yeah.

So what were your options then? Uhm, in terms of -that was when you came to Papworth.
Did you have any other options offered to you?

No.

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Right. How did you feel about...coming to Papworth?

Yeah. Good, yeah. I came for a week's...I think it's a 2-week assessment...or week. I can't
remember if it's a 2 or week- 2 or 1 week. Uh...yeah.

And that would have been in '67?

No no no, that was in...'81. I can here in '81.

'81, yep. Right, so you would have been...uhm, 21, then.

20-...yeah. 22, something like that.

So you went- you finished college at 17 and then went back home for about…

For a while.

..about 4 years by then?

Yeah.

Right, cool. Ok. Uhm..

I did bits in betwee-, you know, playgrou- uh, not playgroups and wha- because I was
older then, but groups in- things I did in between that I went out to...for the day and...that-

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things that saved me being stuck at home.

Uhm, what did you do when you came to Papworth?

I was in, uh,

and, uh...it was called Tallinn, Tallinn Workshop. Like an Occupational

Therapy...for about 18 months. And then I went into the Electronics Department...here...in
Papworth.

What were you doing in...the Oc-..?

Er, PCB's and, uh, solder- uh, lots of soldering and…

And where did you live?

In McFarland Grieve House. Uh, it was a big hos- like a...a hostel with lots of rooms. With
a bathroom next- next to it, and...we had all facilities, kitchen, yeah.

Was that...how was it?

Sort of great, yeah.

And the people you met here how...how was?

Yeah it was great, I loved it yeah. Really enjoyed it.

Did you continue doing that up until they stopped the industry here?

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Uh...well I got married in '84.

Tell me how you met Phil?

We met here. We used to work together in the...Occupational Therapy workshop. And,
uhm...in '81. And we were really really good friends for a while- for quite a while. And it
was good, yeah. Well it still is good.

Uhm, did he propose to you?

No, I proposed to him. (laughs)

Brilliant. And...I presume he said yes?

Yeah.

What about- tell me about the wedding.

The wedding, uh, we got married up Church Lane, St. Peter's, Church Lane...church. And
it was lovely, really lovely. We had a few friends from here...and a few from home
and...yeah it was great. We had our wedding reception at St. Ives Motel. That was then,
but it's no longer. And it was great, yeah.

How...what was the- uh, how did you family...react to you getting married? Were they
happy for you?

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Not really, no. They've always had a thing about men and boyfriends, and... they never
really wanted me to settle with anybody or...but...but I just told them I was getting married.
I didn't ask them, I told them, so. It was the best thing I ever did really, it's great.

Are you still in contact with your family?

Yeah. Yeah. I've still got my dad, and I said I've got 2 brothers. My mum died about...15
years ago or something like that. She died at 51, of cancer, so, yeah…

Where does your dad live?

He lives in Boston.

How were...how were the wages that you got from working for Papworth?

It was ok. It was average, I suppose. Could have done with a bit more, but... (laughs). No it
was average really. I managed. I didn't have, uh, I didn't have my benefits 'til my- 'til I came
here, 'cos my mum and dad used to take em. Uh, but uh…

Were the...were the benefits adequate for what you needed?

Well, not really. It was a bit- it was a bit tight, you know. I could have done with a bit more
really. A bit more help...benefit-wise, but…

And your wages didn't come anywhere close to kind of…?

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No, not really. Sort of statutory minimum, you got, you know.

When did the industry leave Papworth?

Oof, blimey. Uhm, well how long have I...I've been made redundant 4 years, now? And
uhm, I mean...uhm...I don't, I don't quite know. Probably...probably 4- probably 4 years, 5
years?

How did you feel when they sh- when they basically made you redundant? When they
stopped the industry?

Oh it was rea- I was frustrated really. A bit frustrating, but, uh...I must admit I'd been thereI'd been in the same j- sort of job, as it were, for 27 years. So I….I um...I wasn't too- I
wasn't too unhappy. I was a bit peeved about it obviously, but uhm...uh, I wasn't too
unhappy because I think I was coming to the end of the road with it. I wanted a change,
you know. Of course, I'm still looking for work, but...uhm, it's not easy really. There's not a
lot round here now.

How has Papworth changed since- over the years?

Uhm, uh, so I worked in an OT workshop, which was...all disabled. Then I went on- then
when I went to Electronics, it was sort of half and half; abled-bodied, disabled, and I really
enjoyed that. I like mixing with, you know, I liked to think I'm a good mixer. I'm quite
confident and I'm quite friendly, I hope anyway (laughs). And I used to love the com- you
know, the -the mix. It was nice, and everybody accepted us and...we got on with them

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and..they were great actually. Really good.

Awesome. Uhm, did you...did you feel that that was, uhm…?

I just feel it's a little bit more, uhm,.. Nowadays-, I know I don't work at the moment, but I
just feel at the moment, uhm...it's a shame the industry's gone. Uhm...cos there's nothing
for anybody to do really now. Uhm, and it's more centred around people with...disabilities,
which is- which is- which is ok. Uhm, but as I say, as it was before we used to have...a bit
of a mix in the industries; able-bodied and disabled, which was...which was good, yeah.

...As I understand it, Papworth used to be a tuberculosis…

TB Colony.

That's right, yeah, did you see any signs of that when you first came here, or…?

No, I never saw any of that...when- when I first came here. It was long gone, I think it was
in the 30's wasn't it or something?

The split in the village nowadays seems to be that there are a lot of people with disabilities.
There's also a lot of just, uhm...uh, people, families. Uhm, without disabilities…

I think- I think some of the families, uh, in Papworth. Uh, one of- one of the family, probably
in the early years had TB. They've still got TB...families I think. They have families...

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They've just been passed down as it were?

Yeah I think so, yeah. Cos I know one or two that did have...in the early years, TB, yeah.
And they've experienced- they've been with it- experienced it.

What sort of hobbies have you had?

What hobbies?

Yeah, what sort of interests have you had?

Uh, music.

What sort of music?

Uhm, all sorts really. I like a bit off, uhm, Ska, like Madness, Bad Manners. I've always
loved music. Sport. I love- I love...sort of, uhm, I like...playing sport.

What sports do you play?

I do Badminton, Tennis, Table Tennis. I love a bit of a game of Snooker. I love playing
Snooker. I used to play that a lot at school.

What about...watching sport and stuff like that?

Uh, yeah, I watch quite a bit, yeah.

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What do you like, what's your favourite to watch?

Uh, I love to watch...I love to watch, uhm...sort of Athle- I love Athletics. I love watching the
Athletics. Uh, we went to the Athletics in, uhm, uh...a couple of years ago when they did it
at the uh...Olympic Park, you know.

Mmhmm. Was-

That was a good day out. Really good day.

Was that for the Paralympics you went?

Yeah, that was, yeah. Paralympics, yeah.

Oh, awesome. That's really cool.

Yeah, we got tickets for the...for the track events and saw Jonnie Peacock...run. It was
great, yeah really good day.

How accessible did you find that?

Very. Yeah, very very good, actually. Yeah. It was pretty good. And all the volunteers were
nice, really nice. Yeah, it was a very good day.

Do you see any sort of legacy lasting from the, uhm, the Paralympics? Do- do you think

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that that's had an effect -uh, that it's engaged people or…?

I think it's opened people's eyes a bit. Uh, made them a bi- a bit more aware of...I like to
think it has. A bit- bit more aware of disabilities. It doesn't always work, but I think it- I think
people have got...better, you know.

Uhm, do you ever go to concerts?

I love concerts, yeah. We went to quite a lot in the 80's. Lots of concerts, yeah. Went to the
Old Wembley...Stadium quite a lot. So that's- that was quite accessible for...for disabled. It
was good.

Who did you see?

Michael Jackson…just before he died. Uhm, Status Quo. Uhm...uh...Tina Turner. Several
times we've seen her. Phil Collins, Genesis, David Bowie...Uhm...Michael McDonald. Uh,
oh we've seen loads in the past.

What about local bands. Do you ever go-?

We see a lot of local. Yeah, we go to a lot of music festivals and...things.

What- where- what music festivals?

Uhm, uh, The Cambridge- Cambridge Rock festival. That's a good one...for us. It's ideal
for us. The Beer- Beer festival we go to. We went- well, went there last year.

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What did you think of that?

Ah it was good. Great, it was really good. (laughs) But when we got there I think we were
the first ones- well, there wasn't many there when we got there, and I thought, 'Ooh blimey,
what are we gonna do here?'. You know, cos there was hardly anybody there, but people
soon piled in and...it was- it was great. Good fun. Really good fun.

How do you get there and back?

We get a regular taxi driver...uh, called Richard, to plug a name. Uh, he's really great, uhm,
he sort of drives for Panther, Panther cabs. But he has his own sort of, uhm...contract work,
you know, as well, so, uhm…

And his cab is accessible for you?

Very.

For you- can you and Phil both go?

Yeah, yeah. Yeah, it's a big van where we both sit in it side by side, and it's...it's great
yeah. Good fun.

What, uhm, what venues do you go to, to see bands?

Uhm, Newmarket Memorial Hall. Uhm, few pubs...in Cambridge. The Grapes. Oh...we go

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to several, yeah. It's good.

How...when you go to these gigs...do people ever comment on the fact that you have a
disability?

No. No, not really. No they don't, cos we- we see people from concert to concert, so we've
got a- we've got a really wide range of friends that are in the music...thing, do the music
thing anyway. And we're really friendly with them we see them quite a lot, you know.
Really friendly, they're lovely people. Really great, yeah. Really good fun.

What local bands do you follow?

Oh, we go to The Esquires in Bedford as well. That's a good venue, but we've got a ramwe've got a portable ramp now. So if we go to these pla- like...Esquires, there's a big step
so...and we kept borrowing somebody's ramp and I thought, well, I thought, 'This is silly,
we might as well buy our own'. Cos we're out and about quite a bit, we just carry it in the
taxi and if we need it, we've got it.

Mmhmm. Uhm, do you play an instrument yourself at all, or…?

No no, I wish.

Can you sing?

No, no! (laughs). But I really really wished I'd learnt...something, you know. I always wish
that. People keep telling me I'm never too old, but...

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The new venue in...Papworth opened recently, Rocky's. How do you find that?

Yeah. We went on Friday. It was great, yeah.

Uhm...Rocky's is- it's the- it's the only pub in a village that has a high percentage of people
with disabilities.

It is. Massive, yeah.

How do you feel it caters for people who might have differing needs?

Well, I say I've only been once and they...they seemed very friendly.

How do you like living in Papworth?

...Uh, it's alright. Uh, it could have a bit more life. Uhm, I'd like to live in St. Ives really. I
love St. Ives. We go to The Tap Room quite a lot when we- when we go to St. Ives. I like
The Tap Room, they have a lot of bands in there as well. But, uhm...it's ok. It's alright here.

Have you ever thought to move?

I'd lov- we all have. We sort of in- we sort of was in the process of...filling a form out for
Luminous last year, and I filled sort of three quarters of it and I never really got it...finished,
which was…I was hoping they'd get properties in- in St. Ives for Papworth but...well, it's
not happened yet. I'm hoping, but...

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So...your accommodation here is…?

We've got a 2-bedroom bungalow. Very big bathroom, huge lounge. It's lovely, yeah, it'swe've got it just as we want it so...it's nice, we're all- well settled now.

How do you find The Papworth Trust as an organisation?

Uh, the maintenance team are very good. We've never had any bother with them, really. A
good bunch of lads. Yeah. Always tidy up after them. Yeah, they're alright.

How do you think….attitudes have changed towards people with disabilities over the
course of your lifetime?

It's got better. I think things have improved since the...Year of the Disabled, you know.
Uhm, I can't remember what year that was now. But, uhm, you know, people are getthey're getting there, slowly.

A lot of the terminology has changed, of course, as well. I mean, the most recent one,
which still happened quite a while ago, would have been the change from 'Handicapped' to
'Disabled' and the difference between saying 'a disabled person' or 'a person with a
disability'. How important do you think that is?

Doesn't really bother me, to be honest. Uhm, I couldn't stand the word 'Spastic'. I hate that.
I'm pleased they got rid of that. It's awful (laugh). It's an awful name, isn't it? A terrible
name. And we're well shot of that I hope, yeah. Uhm, no, it don't bother me really, Justin. It

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don't bother me.

How do you think changes to...government legislation or...government attitudes towards
people with disabilities. Have you been affected by anything say like, The Bedroom Tax?

We've got- oh, yeah we have. Mega, yeah.

Mmhmm. So you...have 2 bedrooms?

We have. But we use them both. Uh, obviously one we use, and uh...the other one is...got,
uhm, obviously, because, uh...when I had back surgery about...4 years ago, I had to have
a special bed So...uh...we've got my special bed and Phil's got a single next to me. Uh, we
had to get rid of the double. So the spare room. Our spare room...is used for things like
medical equipment and hoists and...obviously our spare bed's- our bed has gone into the
spare room. So we've- we really do use our spare room. We need it, for storage, you know.
We couldn't manage in a one bedroom, no way. Not with us both being in chairs as well.
There's no way we could manage in a one bedroom. When we- when we heard about it,
we wrote to them and explained our situation. We did a- had a quite a big letter actually.
And, you know, I said- they said- I said, 'My door's always open. My door's open if you
want to come and see us about it'. We didn't get- we haven't had a phone call, we haven't
had a visitor, or nothing.

So what have they done? Have they cut your benefits or raised your rent or...? How does it
work?

Ah, I can't remember, what they've done. Uhm, I think they've probably cut a benefit a bit,

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because we've lost, sort of, x amount of pounds for The Bedroom Tax, you know, I don't
think you should be penalised. I think they're- I think they're targeting the wrong people,
really. Definitely, you know. It's all wrong I think.

What changes do you think...could happen to make- to improve...things for people with
disabilities?

More money (laughs). Uhm, uhm...the transport is a big issue, round here. Because if you
haven't got a car, you're stuck really. And then you've got to use taxis, which are not cheap.
If you need- if you rely on taxis... like we do, it's really not cheap, you know…

There are- the...the bus that serves the village. The Whippet bus…

Oh, the bus. The bus is horrendous. You never know- you never know whether you're
gonna get a low-floor bus...to be able to get a chair on it.

So you don't know whether you'll even be able- you won't even know whether you can get
on or not?

No, no. And then it only takes one wheelchair. So if you want to go out as a couple, as we
would, shopping or whatever, you can't. Cos you can't guarantee that the next bus..is
going to be- be able to- accessible.
Oh it's a nigh- that's our bugbear, that is. It's a nightmare. Yeah, buses aren't good, really.

Anything else you think could change?

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I just think they ought to provide more for people to do around here, you know. It's like, I
want to do things. It's like I want- I'd love to work- I'd love to work in the coffee shop. I'd
really love to work in a coffee shop, but I'm not funded. They won't fund me. Social
Services won't fund me to work in the coffee shop. Cos, well they say I'm- we're active and
we get out and about and...you know, we- we're able to find our own entertainment
and…all that sort thing, That's not the point, though is it? Everybody needs money, don't
they? And wants to be, ear- sort of, you know, earning. Everybody wants a job. Everybody
wants a job, don't they? If you really want a job, I don't see why you shouldn't be able to do
it, you know. And I've asked several times and they- they won't budge. So, I'd love to work
in there. Something to do. You see...I want something local, cos obviously if I go out the
village I've got to find transport, and it's gonna cost me to get there, and what I'm earning
is gonna go on transport, so I'm not going to gain anything really, am I?

Phil spoke a little bit about you did some fostering. Will you tell me a little bit about that
please?

Yes, Yeah, yeah. Uhm, we fostered a- we sort of- it was sort of Respite Care, really. Sort
of temporary foster...i.e. Respite Care. Bit of a mixture really. Uhm, uh... I’mtrying to think
when it was. I don't know whether Phil told you what dates they were? What year it was,
roughly? But anyway, we- we fostered him, uh, from when he was 7. He's got Down's
Syndrome. And, uh, he's 28 now, I think? Yeah. Bless him. Yeah, we don't see him very
often now, but uhm...uh, still keep- he rings us occa- very occasionally. Uhm…

What made you decide to do that?

Uh, well we always wanted children really, but It never happened. It's never happened.

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And I just thought...if you don't try, you don't know.

And you enjoyed it?

Loved it. I really love- and everybody knew him around here. Everybody loved him, yeah.
He used to get invited to lots of...people's parties round here, you know, cos they all knew
him. And he loved to party (laughs). He loved to disco, he loved music. You know, he was
always on the dance floor. He really loved it, yeah.

Where is he now?

He's in, uh, Garden Walk, in Cambridge. Victoria Road, innit? Yeah. He's got a- it's like aI think it's a house built into flats...for people with dis-, uh, sort of learning difficulties, yeah.

What do you think the future has in store?

What do I think the future has in store...I'd like to find a little part-time job. Uh, I'd like- I'd
really like to move to St. Ives. I'd love to move to St. Ives. Uhm...it's got a bit more life and
everything's on your doorstep, really isn't it? It's got a bit of everything. It's nice. Uhm, we'd
like to be able to lift our bungalow and take it there, really. That would be lovely (laughs).
Cos we've just got our bungalow as we want it. It's lovely, you'll have to come- you'll have
to come over one day.

Is there anything you'd like- is there anything we haven't spoken about that you think is
important that you'd like to say?

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Uh, I just think the transport needs to be sorted, really. It's...it's all right for– you know, it's
alright for- if you're really independent, but if you need support- you know, if you need
support or...you know...I dunno...the- sort of in years gone by, there used to be a lot of
things going on. You know, we used to be took out in the bus. There used to be something
on every day- every evening, when we first came here, sort of '81. You know, there used
to be something on every night; swimming, athletics. Oh, all sorts of things, but they don't
do any of that, they don't do anything now. I remember we used to go out to concerts and
things. We went to Audley End, a few times, to the outdoor things.

Who arranged all that?

Cor, I think- I think the support workers, support staff.

Who work for Papworth?

Yeah.

Why has that changed?

Ah I don' t know. It's all...it's all...it's all money, really. Government. They're not allowed to
do it now. Sad really, but...yeah. I just- I just feel that, I don't know. Uhm, I don't want to
speak out of turn, because it's not fair, but...I just feel the...I just feel the emphasis a bit- is
a bit more...on Papworth, it's a bit more on people with...Learning Disabilities as opposed
to Physical? Do you see what I'm say- and I know I've probably got a form- some form of
Learning Disability, but it's more physical, you know. I just think it's a lot different to when I
first came here. There was a lot more able-bodied working and...it was, sort of, uh….you

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were sort of integrated more, you know.

The fact that you could work here, was that one of the reasons why you wanted to come
here?

Yeah. Yeah, definitely. That's what I came for, mainly. Primarily.

'Cos I've spoken to...other people around here, uhm, who also used to work. And they very
much miss the fact that they had a job here and things like that, uhm…

Well I know a couple that do, yeah.

The fact that it gave you- it gave you a routine, it gave you structure.

It gave you something to get up for. Gives you a reason to get out of the bed in the
morning. Yeah, you know. Sad really. You know, you see people roaming around and
they don't know what to do with themselves really. Well, they just sit in their flats or
bungalows and they don't do anything really, do you know what I mean?

Obviously we're doing this interview in August, so the days are long and...the weather has
been alright. The weather's also been very poor. Uhm, how different is Papworth in the
winter? When it's colder for coming out, when it's darker for longer?

Uhm, well you get a bit stuck in your...well, especially if it's snowing. They don't clear the
paths around here much. They don't clear much, around here, which I think is appalling,
really. Considering the amount of wheelchairs we've got and...people with walking

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disabilities and, you know, difficulty with their- on their feet, and... But they don't clear the
paths around here. Roads and...sort of thing, Round our way they don't, you know. Bless
him, our neighbour opposite does our...a bit of road of ours and our path. He always does
it with this little old boy, they come out with a spade and– does some ra- you know, they're
pretty good, putting sand down.

If you were born today, say with the same disabilities, how do you feel life would treat you
differently?

Oh, I wished, I wished. I always wished. I dunno, I never thought about it at the time, but I
always wished I went to...normal school, and I never– in- in my day, you didn't get the
opportunity to do that like you do now. Uhm, I mean it never occur- I mean I- I wish now
that it- that it happened. But at the time it never occur- if you see what I mean, it never
occurred to me, because I- because I knew it...didn't happen anyway. Do you know what I
mean, like it does now. You hear about it a lot now, don't you? Integration and all that.
That's one thing I really miss...I wish had happened, you know? Uhm...I think I'd have...I
think I'd have, uhm...not mix not mixed better, cos I- I think I'm quite a good mix- mixer,
you know. I make friends quite easy I think. I've got lots of friends, but, um, I just wish I'd
gone to normal school, really. Yeah.

Do you think that was a very positive move that that happens now?

Yeah. Yeah, very.

Do you find that as time's gone on, people have become perhaps more educated towards
people with disabilities? More understanding?

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I think so. I think so, yeah. They're a bit more switched on, yeah. I think so. Uhm, yeah.

Is there anything you'd like to add?

Uhm, uh...no, not really. I enjoyed it, it's been good. I just wish there was more transport,
more to do, you know.

That's the one thing that you think really…?

That's the main bugbear, you know, the transport situation around here. It's a bit...veryquite scarce actually, quite sparse you know. It's really annoying.

Yes. Yes, I agree. Uhm, and there is...certainly I think, of an evening, especially, a lack of
amenities in the village. Uhm…

Oh there's nothing. There's nothing, really. Apart from the club, now. You know.

Well that tends to be the epicentre of any community. Uhm, I think it's nice-

Yeah. And even if you don't drink it's just a social thing, isn't it? It's like the coffee shop
here. I love the coffee shop. I'm always in the coffee shop (laughs) cos it's just a social- for
me, it gets me out my four walls. You know, and if I just have – if I just go in for a cup of
coffee, I can chat to people, listen to people. I love it. Oh God, just...bless the day we got
that. I love it. And the deli, oh, I love the deli. You know, it's- it's just a- it's more of a social
thing, really. You know, you don't have to eat a lot and you don't have to- just have a cup

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of coffee, and chat to somebody, it- it, you know gets people out of their four walls, you
know.

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