So, to start with, could you please just tell me a little bit about your disability or health issue

please?

Ive got Right Hemiplegia and it affects my right side, but not all of it shows.

So, um, when were you born?

When? What do you mean when?

What date were you born?

3rd of June 1960.

1960? Cool. And whereabouts were you born?

At home.

Where was that?

8 Hillcrest Villas, Great Chart, Ashford, Kent TN23 3AZ! [laughs]

[laughs]Um, what um- do you have any brothers or sisters?

I had, um, eight brothers. Oh, I had- it was eight of us altogether. Two died when they was
young, one was killed on the road when I was six, and my sister's died now, so we'vethere's only four left, counting me.
1

What did your mother and father do?

Ohh. My father, at first, he was a building maintenance. Then he had an accident and
couldn't do that, so he had to go to rehabilitation and do Storeman. My mother didnt
actuall- when I was little, she did fieldwork, and thats where I learnt to walk, in the field,
but Ill tell you further on, and thats about all. She didn't work really.

What was your house like?

A normal house. They are around here, in Sawtry, you know the ones that've got the
concrete slabs down the side, that's the sort of house I was born in.

Oh ok. Um, did any other members of your family have a disability or health condition?

My father did, cause when he did his back, he was classed as disabled and all that, but
thats all.

Do you want to just talk to me a little bit about your very early childhood and stuff like that?

Yeah. I was born- they didnt know I was like this until I was four months old, and I was
picking up things with this hand and transferring them to this, and because my parents had
other children, they knew that wasnt right. So, Doctor was coming to coming to see one of
me other - my brother or something, and they showed me him and he told 'em - he told
'em, what I was straightaway. I don't know if it was Meer or Bush. Kate Bushs father was
one of our doctors [laughs]. And they said I would have to go to the hospital every so
2

often, and they said that I wouldnt walk without callipers, but my mother did fieldwork, so it
was safe at that time to leave us at the edge of the field and play in the dirt. And she was
in the field and they turned round and said, Oh look, your boy's walking! And I was walking
round the tractor, and Ive walked ever since.

So you taught yourself?

Yeah virtually. Something caught my eye and...

What was your mum and dad's attitude towards your disability?

Nothing. Nothing, I was- they didn't stop- they wouldn't let me cook or anything to start off
with, but when they went out and I did it, and after that they left me- they didn't worry about
it.

What about your siblings?

They was fine, I used to mumble a lot when- and my younger brother could understand
me. Me sister used to have me when I first come up here for a weekend. My older brother
used to come and see me in hospital in his unif- his navy uniform and all that, so they've all
helped me some way of a kind. And my sick brother, two old- two years older than me has
got Richard, our son- my son, now cause I couldn't look after him and Jo at the same time.

Mmhmm. So, um, what did, um, what sort of treatment did you get when you were a child?

Nothing really, only Achilles tendon lengthened.

3

There was no, like I don't know, rehabilitation or anything like that they offered?

No, no.

What was the general attitude, I mean obviously you were a child so it was difficult to
remember, but can you remember what the general attitude was. I mean early 1960's from
the doctors and stuff?

I dont think there was any problem, I dont think so. I know they didnt know much about it
at that time but they knew what it was, cause they must have had it right back from, uh, the
beginning.

What is your earliest memory?

Uh, going to school. I went to the village school for four years, then I had to go to two
special classes. Its only cause it was, uhm, smaller classrooms. It was, uh, if you know
what I mean? Yes, a backwards school. It was just cause it was smaller classrooms. Then
when I was 12, they closed down cause a new- a school actually opened up and I went
there from 12 to 16. Then I went to a training centre run by the...Scope, or what was
Spastic Society. They helped me a lot when I left school. Quite a bit.

What did you study at school?

[laughs] Just the basics. sorry. The basics, writing and- cause, um. I just think that if I
hadnt have been like this I would have been right- handed. Thats why my writing's not
4

very good, but I was in two special classes and there was three of us, our writing was not
very good at all, and I was sent up there to a certain bloke. There was one that couldn't do
it and he had- they had to teach him to type. but mine was alright it was readable and that,
so...but, then when I left school I went- I was out of work for quite a while, so I went to
college to learn typing as well and that's why to cater for it.

So, when you were a kid what sort of toys or games did you play?

Virtually the same. Same as anybody else. I used to go up we used to have a lot of
snow, we used to go out with them. I used to come back and my foot - my right foot
would used to be almost blue cause I can't feel it when its cold, and they just used to rub
it. They never used to stop me going out there with 'em, I used to be with 'em- I never used
to go down- and if we was scrumping we used - I used to be lookout, cause I couldn't climb
the tree!

Brilliant! What sort of food did you eat when you were a kid? What were your favourites
and stuff like that?

The only thing, I eat it now, Marmite. Ive ate it right from when I was a little 'un. Even now I
do! [laughs]

And do you remember anything you particularly liked on television or anything?

Wildlife and that, and science fiction.

Do you watch Doctor Who?

Not that- Im more Star Trek.

What about, do you have any like particular memories of Christmas or?

Oh it was family. Family ones. All the family. That's when used to see when all the
family used to come together.

Nice. And you got on?

Oh yeah no problem. I did have a go at my brother once, but it wasn't me that got into
trouble. It was him!

Um, did you have any childhood illnesses like measles or chicken pox or anything like
that?

Oh yeah I had all that. The only thing I didnt have is mumps. But coming from a big family,
it goes straight through the family, so its a good...

That's true. Yeah. And it is good, you know, to get the immunity up and stuff like that. So,
do you um, going back to school days and stuff like that, do you remember any particular
teachers or anything youve got memories of, or...?

I do remember one, I cant remember her name now, but she her husband run the pub
in the village where my brother used to live. And actually they was quite- they were good
to me.

So what was the name of the village school?

Oh. The village school was Great Chart School. I was only there for four years, and then I
went to- it was Stanhope school, it was in Ashford. It was just two special classes and that.
And then it was Greystone's, but that dont exist anymore now, because they dont have...
now they have a like a one-to-one system in the classroom.

Like mainstream with support?

Uh, with TA's. With TA's in they dont need it now. They knocked it down.

So what, uh, was it Greystone?

Yes, yes.

What age did you go there and leave there, roughly?

I went there at 12 and I left at 16.

16. And where did you go then?

I was- and then in '77 I went to Sherrard's. That dont exist anymore now.
7

What was that, a training college?

That was a training centre. It got you for- ready to- for living independently as well and all
that.

Oh ok. Whereabouts was that?

Uh, Welwyn Garden City?

Um, ok. And how long were you there for?

Ten months.

Cool. Do you have any memories of that place at all, that particularly that stand out? Did
you like it there?

Yeah. Yeah, cause it was walking distance to town or we used to get- they used to take us
in, but in the summer we went through the woods to Sherrard's.

So what happened, um, so when you say they taught you to live independently, what was
that?

That was like making beds, how to make a bed and all that. And cook. Oh, but I was
taught at school to cook and that. At Greystone's I was taught to cook. The girls did, what it
was it was, the boys did cookery and that, then the girls did woodwork and all that. They
8

swapped. Probably because it was a special school more or less. Cos I say special
school, it sounds better..

Did you enjoy it there?

Oh yeah it was no problem, I went there- I had to- you go by bus, cause when I went to do
the special classes I had to go by taxi because it was more it was three miles anyway.

Was that your first time of living away from home, when you were at the training college?

Yes.

How did you find that?

It was awful the first time. It was awful because I was always

Well if you come from a big family I guess and you've got- always got that around you, to
be away from that is quite..

Yes, but I was the last one to leave home.

So, you were there for ten months, where did you go then?

I was out of...work until about '79 and they tried to get me here.

Did you go back to Kent in the interim?

9

Yeah, I went back home after I left, I went back home, and I was and I had an interview
here with a DRO, Disabled Reassessment Officer. I had a job putting, uhm, points in darts
and I went- come up to the interview for a week, I went home, we waited and we waited.
No more. And then I was made redundant from the job.

This was one down in Kent?

Kent. We went back to him and he said Oh, I've- I turned it down because you was
working and I was told up here to keep the job until I heard. Then, then uh it was another
couple of years, oh about years- '81. And we had to try through the social we tried
through the social services. I came up here in the- that was in the Engineering the first
time, but I didn't - I went into the non-working place when I did the thing and uhm...I came
here after the interview but I didn't have to have a medical because they kept- still got my
records from when I come the first time.

Right.

So, but I was also here a week then.

So you came here permanently in about '81?

No '82.

'82.

10

The year, rough- I can remember when I wen- came, 5th of April 1982.

And where did you, so you came here to work?

Yeah.

Where did you work with them?

Uh, in Tallinn or what is now The Progression.

Right. What was that?

It was- we did like packing and like doing silk work for ladies and all that sort of thing.
Meters for what changed colour of- from the, uh, colour when they got radiation and all that
lot, putting them in packets and all that.

Oh Ok. Whereabouts did you live at that point?

In the hostels. There was four hostels here at one time. There was South Park, Robert
Ellis, McFarlane Grieve and Leonard Stott.

What one were you in?

South Park. Until it closed down and the workshop moved and then I went to Robert Ellis,
oh and also there was Bradbury Court when you went independently. Is- all that started
when they started getting you independently.
11

Right.

Which is like a flat.

So what was South Park like, the hostel?

Cold!

Really? How many people were there altogether?

Oh, oh my god I cant remember, it was three corridors. There was the top one, bottom
one and the middle one.

Did you get on with people there?

Oh yeah no problem. I was, once I got over the- and thats where I saw my first person
have a epileptic fit. I'd never seen anybody. It frightened me at first but it dont now.

Mhmm. Are you do you still see anybody you lived with?

No.

Nobody still in the village or anything from that area?

What- from what area? Ashford?

12

No, from um, sorry from South Park and stuff.

Oh, theres like Barry Jenkins, but I dont speak to him very often cause he [laughs] but
theres quite a few.

What did you do, in those days, what did you do in your down time and stuff like that, what
did you do of an evening?

Oh I used to, when I was first here, I used to be out- the only night I used to be in was
Monday. We used to go to PHAB-ing on Tuesday, uh, swimming on the Wednesday,
athletics on a Friday- Thursday. And PHAB on a Friday. Then at- once a month we used to
have a disco in Cambridge with PHAB.

Whereabouts in Cambridge?

St. Andrews Hall.

Cool, so how long were you- so you were at- how long were you at South Park for?

Six years

And then you moved to Robert Mcfarlane?

Five years.

13

Five years. So, we're looking at, so if you were in there six years that would be about '88?
That you moved out of there and then '93. Why did South Park shut down?

It was one that they used to use for, uhm, Tuberculosis and they just filled in the corridors
and there was gaps and all that, thats why it was cold. And we used to have a warden that
used to go down, in midwinter, go down and fling all the windows open and the corridors
used to flood! And we had to walk miles up to the dining room and the television rooms.

Oh my! What was the food like there?

Oh, fine, they used to cook it there first, then they built the central cook place behind- near
the nursery.

That was a separate dining room was it, that you would go out to?

Yeah, yeah. Or not- no because thats when they used to take the food to the hostels.

Oh right, so they cook it there and then take it down. Cool. Ok. Um.

Yeah. Ive got fond memories of here, when I was in the hostels, with the snow and all that
lot. We used to get a lot of snow and the van used to wobble- slide around up the slope of
the White Hall?

Oh yeah, I know.

14

Cause that used to be the head office at one time, probably before you come. And I was in
Bradbury Court four years, and where I am now, 18, 19 next year.

What was the village like back in those days, like when you first came here in the '80s and
'90s.

Here was all factories. There was none of this here at all.

Were there shops and stuff?

The shops, you know where that car park is?

Yeah.

Thats where the village shop was and the Post Office.

Oh ok. Was there a pub?

Yeah. The Indian Place at the bottom, well that that was Kisby's Hut, then there was also
the Sports and Social Club where the- Rocky's is.

Oh ok. Was there quite a social scene in the village, was it quite a lively place, or?

Not really. I wasnt worried cause I come from a village anyway and there wasn't much
going on in the village. You don't expect there to be do you, really?

15

No. So, you worked in various industries here, um, when did you stop working in, like, the
industries and stuff?

What do you mean?

Well I know there used to be like, as you say, factories and stuff, you know.

Yeah. We used to be in Tallinn, yeah.

That's right. And then they kind of stopped all that?

But before that happened, I went on- worked on the gardens with- it was, hes getting on a
bit now but I used to work with him on the gardens at first. They got me- because they
found out I was interested in it. What we then- that was when we had- used to have
welfare to help us and one did- said, cause Im a amateur botanist, they didn't want me to
go out onto the gardens because they thought it would hamper me with that hobby. But it
hasnt. It's helped in fact.

So what were what you doing in the gardens, like maintenance and stuff like that?

Yes.

When did you start doing that?

Oh Christ, now youve asked me! [laughs] Before it actually went to Progression.

16

What was that, going to Progression, what does that mean?

It was to get you back into- trying to get you back into work, but it was- didn't work. It was
only certain ones that...

Right. Cool. How long were you working on the gardens for, do you think?

Quite a while. Then they, I was- in the end, I was sitting in the office just waiting for the
phone to answer. So Liz James, the tutor- Liz James then, had me down here, knew about
it, had me down here doing the gardens when somebody else was on the reception. And
when they- nobody worked on the reception when the- virtually when the Progression
started, they went all onto that. I offered to do the reception.

And thats what youve been doing ever since? Pretty Much.

Yes.

Can you remember when that was?

It was over- about 14 years.

Do you enjoy what you do?

Yes, cause I still do outside. I pick up the rubbish and empty the bins and...

Ive seen you doing the gardens upstairs and that.

17

Yes I do do that. I still keep my hand in.

So tell me a bit about the botany. Thats really fascinating.

I- at school we did a hobby- a thing. I think it was Greystone's, Im not sure which kiwhich school I went to that did it, we did uh- on the plants and all that.

And you got into it that way?

Yeah I got into it that way. But I was always interested in gardening anyway, always.

You're quite- you like nature and stuff, would you say?

Yes, yes.

Cool. So, what, um, what sort of stuff do you do like, for your botany. Can you identify stuff
and all that, or?

What I do is, I go- I used to- when I first started, I used to pick the flowers and press them.
Ive still got an old press what my father made for me, he adapted. He was quite good, he
adapted things for me so I could manage it with one hand, but I wont- I'm sorry, but I wont
get rid of it because he did it for me, do you understand what I mean? It's... But now I take
uh, take photographs and that cause then youve got a permanent record then. But Ive still
got some plants even from the school, like an orchid that was- the teacher got me or give
to me, still pressed in the book. Then I write a little bit about it, where they're from and now
18

I write about it, where they're from. And I put when I found them and where they come
from, what use they are, like, if they're edible, poisonous, medical plant or they can be
used for medical and all that lot, now.

Are you very good at recognising plants? Can you name a lot that's kind of like out and
about and stuff?

Yeah.

Have you got any other hobbies?

No, just gardening.

Do you want to tell me if you dont mind, a little bit about how you met Jo?

Uh, yeah. Um, she came in, what, '91. I got friends with her and thats how it developed.
We had one child. We didnt know and she was a still-born. That was '96. Then we had
another one- we got married- oh, bef- that was before- no, no cause we got married in '97
that's it. I had to think then.

Where did you get married?

Here, in the village. Up at St. Peter's.

Right. Was that a big do?

19

All my brothers and sister and that come with me. And the two nieces, oh- yeah, two
nieces. It was my wife's- my sister's husband's children, but we class them as two nieces
cause they don't have any- now my sister's gone, they dont have any dealings with their
father. He was a [laughs]. So we- but ah, they're all right. We don't- we just keep em in,
like, send Christmas cards to em and got in touch with them on Facebook and that. Ive
got a lot of, uh, nephews and nieces and grand-nephews and nieces.

And you keep in touch with those?

By Facebook a lot of the time!

Its easy isn't it though, that's good though. You know?

See the pictures and that, that's...and most of them are down in Kent anyway, because its
my older brother's.

So your family are still kind of based down Kent way?

Yeah most of 'em. It's only John who's up in Hertfordshire now. In Hemel Hempstead.

Did you have any particular specialisations in your botany?

Passion Flowers.

What was it about those in particular?

20

It's- where they come from and all that.

Where do they come from?

Most of 'em come from the...South America, or the Caribbean and America as well. North
America.

They're a very pretty intricate flower I think, if I remember.

Yes they are.

Do you ever go to The Botanical Gardens in Cambridge?

Yes, I go there from, what, April to September. That's where I've got a lot of my- well,
found a lot of my plants, and where they come from and

What about Kew Gardens? Have you ever been there?

Oh I've been there. Went there with me- uh, with the Community Transport. I liked that as
well, because I saw plants from other parts of the count- world that I've not seen before.

Have you ever- did you ever sort of think about pursuing a career in botany or gardening
or something?

No I'm quite happy with what I'm doing.

21

So, going back to when you left school. Um, did you get any benefits or any help, uh,
then?

Oh, I can't remember that now.

What um, what were people's attitudes in those days, at that point, when you were a
young adult, towards people with disabilities? How do you think that was? How do you
think it's changed, um, if it has?

It was better then sometimes. You didn't get so many people, um, they just- really, I think,
with my disability they didn't know that I was a lot of the time because I could join in with
'em and that 'cos I could walk and run and all that lot.

Mhmm. How do you think it's changed then? Oh if you- if you think it has? Like ingenerally in terms of society and stuff like that?

It's got- from the 60's and that it has got better. Accessibility and that has got a lot better.

Mhmm. And what about attitudes of people, do you think? Are they- are people- what are
people..?

They're more.more in- used to it and that now? I think.

How do you think the changes that have happened in Papworth, what do you- what's your
opinion on those?

22

Not very good for some of the people.

In terms of getting rid of the industry and things like that?

Uh, not that. For the care and that. It's- the people who need the care and that.

Mhmm. That's not there anymore?

Not a lot of it.

Why's that change come about?

It's not so much, how can I explain it, not so much Papworth. It's the government.

Right. Uh-huh. What, cutbacks and stuff like that?

Yes.

When did that process start do you think, or?

It doesn't really- not long ago. It's not in- we've had so many changes here, cause we had
all wardens here at one time, then that changed.

What were the wardens? What- how did that system work?

23

Cause the road where I live is a house, where the wardens used to live. So they was on
call virtually overnight as well, and that. And it was- cause it's over the back here, there's
three roads and they're all And we had wardens in the hostels, and they- they helped,
do you know what I mean? We had staff and all that, but there was more staff on. And we
had- in the hostels we had night staff on and all that, and when we first went independentI went independent, they had night staff or staff on at night, but now they don't have
anybody.

So the way it is now, you've got- everybody pretty much lives independently?

Yeah virtually. Most people do now.

But there's no actual support overnight?

Not much. Not much. Unless you pay for it!

Is- and that has to- that depends on your level of assistance that you get, I presume, on
what you can afford and stuff like that.

Yeah. And if you need a lot, and say like, if you can't cook, and all that lot. Luckily Jo's fine
because I'm there, I can do it. But when I first was with Jo, my sister was alive, and she
didn't think that I should be caring for somebody. Somebody should be caring for me. But I
think she- before she died, she came round to it, that.

Mhmm. Would you like to talk a little bit about your son?

24

Yes. He was born,, um, on the 27th of November 2005. He's ten on Friday.

Are you going to go and see him?

We might see him at Christmas but we don't go- we'll probably ring- give him a ring on
Friday cause I think, and that. So we- we can't go down and see him cause we've got no
vehicle we can go down in.

He's in Kent, is that right?

No, he's in Hemel Hempstead.

Right, you're other- where you said your other brother-

My brother two years older than me has got him. They've got guardianship until he's 18.

What does your brother do?

He does- he was in the navy. Now he does computers. I don't know what he does with
computers, I don't know.

Ok. And he's married is he?

Yes.

Has he got any children of his own?

25

Two grown-up.

What about- what does his wife do?

Nothing at the moment. Nothing.

Was he the brother who came to see you in his naval uniform you were talk-

No. No. That was me older brother. [laughs]

So you had- so a couple of your brothers went into the navy?

Uh, all my family went in, bar me. My parents were in - went during the war and all that. It
was two in the navy and two in the air force. My sister was in the air force, and me younger
brother was in the air force. But they're all out now.

So what's your little boy's name?

Richard. Richard William.

Oh, named after you? Oh lovely.

Yeah. Cause that's why some get me confused and call me Richard, cos most people
name 'em after their first name, but I didn't want him to have my second name. And the
middle name is my younger brother's name and it was also my father's middle name. And
26

there's nothing actually wrong with him. All he does- all that happens is his foot turns
inwards, but they're leaving it until he's old- until he's stopped growing before they do. But
they can do something about that. But they say that's from me, but that's nothing, they can
operate on that, so there's no problem. He's doing well at school as far as we know. He
does judo. That's it, I think. He does football- he did do football but he had a choice of
doing judo or football.

How did it come about that he went to live with your brother?

What it was is...Jo had him normal in Hinchingbrook. I was in Hinchingbrook. We had care
for a start, I had him- we had him for the first year, cause it... the social services tried to
take him away more or less, but it didn't work. We went to court. We- first we went- what
was it- came- that's it, that's it, we went somewhere first, that- then we couldn't do it in
Cambridge because somebody who was dealing with us, her husband was the..in
Cambridge, so we had to go up to Peterborough to the family court then.

This was the first time, when they tried to take him into care was it?

No. Yeah, no they just tried to, but they didn't get-

What was their argument? Why did they think he had to go into care?

They didn't think I could look after him and Jo at the same time.

But you did it for the first year when it's-

27

The worst time, yeah.

Exactly. Yeah. So what happened then?

They- the judge was all for us, and she said guardian- and the guardianship, it was
brought in for the ethnic minorities that don't believe in adoption and things like that, but it
has helped us sort as well, you understand what I mean?

So guardianship rather than adoption?

Yeah. We're still his parents, and they can't change that at all. They can't change his
names. Nothing.

I mean, how did you feel about, though, him having to go and live with your brother. Whywho took that decision? Was it the court?

Yes.

Did you want to keep- you wanted to keep him?

No no no. I knew I probably couldn't- as he got older, cos I'm not that steady on my feet
anyway cos I've only got one- I've got one leg shorter than the other, but I couldn't run after
him if...but he probably wouldn't, because he'd know. It's like animals know. But- cause we
had a dog that never- he pulled with all the other people. Took him for a walk, but he never
pulled with me. And so he knew that I couldn't put up with it. And he used to- dad used to
sleep on the settee, and if there was somebody at the door, he used to go and nudge him,
28

because he knew, he didn't bark- if he barked he wouldn't hear him, so he nudged him.
And he wasn't taught, he just...cause we treated him good, he treated us well.

Yeah. So was it like a mutual decision then to let Richard go?

Yes. Yes. Yes and I was at- I was fine because it was in the family and we were still
could still have contact with him and all that. We could have gone- if we didn't get contact,
we could've gone back to court, but we never had to at all.

How did it come about that he went to your brother? Was this- did you suggest this, did he
suggest this?

What- they were put forward.

Who put them forward?

Or they, I can't remember that bit, but

Right yeah. But somehow it would have been suggested that it was still in the family and
stuff like that?

Yeah. Cos Jo's older sister was going to, but she had problems with her son, so she
couldn't go there. But it's nice that he's with my brother because they've got the same
surname and he's got Pegg so- and they've got Pegg, so they- people- he wouldn't get the
mickey took out of him because he's got a different surname. Cos they- children would do
that.
29

Cool.

But he was only young when he realis- I think he realised that they wasn't his parents. Cos
he went to school and told 'em, and the school had to go to my brother and that and ask
'em if it was true, and it was. Because he turned round and said, 'The people that I live
with are not my parents. My parents live in Papworth.' Cos we thought that we'd have
problems, him saying- calling us mum and dad, but he don't.

Does he look forward to seeing you?

When he sees us, we was out somewhere, and I was getting Jo's chair up, but he just
stood back and was watching how I do it.

Do you miss him?

I don't. But I know that he's safe, he's alright and...

And he's happy and stuff?

And he's doing well at school, that's the main thing, he's doing well at school. But he's a
late- he was a- he was nearly five when he went, because of where his birthday falls,
because he was actually born on Advent Sunday.

How did Jo take it?

30

She don't, aint took it that good. [laughs] She don't see him. Ah, I said, we- he's still ours
so if- but we're hoping to see him- they're arranging to, cause we go up to her mum's for
Christmas for five days and they're hoping to come on the Sunday the day after Boxing
Day, or the Monday. One of the days they're coming up to see their- that side of the family.

What changes do you think would- could happen, whether it be in terms of attitude or in
terms of society or things like that, that would improve things for people with disabilities?

Uhm, to work with the able-bodied, like children and- so they're- do you not understand
what I mean? Uh, so integrate them into, like, play centre- play-areas and nurseries and
that. They do here, um, a lot of the time cos they have them in schools now, but they're in
the school with 'em and all that, so they don't

So it's normalised.

Yeah. You understand what I mean? So they- so it's just second nature to 'em. They don't
know- realise they are disabled. You would- you don't after a while. I was lucky because I
didn't actually go to a disabled school.

Not until training college I suppose was that, when you were in-?

Yes, until I went to that. But that was through the- what I am, but they arranged that. 'Cos I
went to a assessment centre as well, at Prospect Hall in Birmingham and that and I've
been there- back there since after, that place and it's changed a lot. They helped me more
when I left school than they did when I went to school, if you know what I mean? And I was

31

took away to different pla- people took me away- cos my father was disabled, cause he
was laid up for 15 months or for a while...while, when he done his back.

What happened to him?

He slipped a disc. And then he got- he's got arthritis right through his skeleton. And they
took me away for a week. I don't know if it was Red Cross or some I think it was Red
Cross - to give my mother a break from looking after me and, if you know what I mean,
and my father. But he didn't do, um, he didn't do all my, like, help or help me at all or
anything cos he couldn't.

You just did it for yourself?

No, my mother helped me a lot. Like, I never, I could bath myself and all that, but I never
locked the door and that, you know what I mean?

Just to be on the safe side?

Yeah. In case I slipped, or she was there when I got out the bath in case I slipped and that.
And the only adaptions we had in the house was a extra bannister put in, because I was
walking down the stairs backwards and holding onto it. And a rail that went over the taps of
the handle that I could get hold of to lift my- get myself up.

If you were born, say today, or born ten years ago, how do you think things would have
been different for you?

32

Completely different.

In what sense and why?

They know a lot more about the disabled and that now.

Mhmm. In terms of medical treatment and stuff like that?

Yes. Yes.

Is that in terms of your condition as well, that there's more options and they know more
about it?

Well, I didn't know that a lot of my condition some of my condition don't show until I found
out, until I went on the internet and looked in this. Because it affects my- it affects me
tendons, my muscles and my nerves. On this side, I've got not much nerve working. But it
don't affect me. That's why I probably can't feel the cold- feel it. I can touch myself, feeling
because my parents didn't think I had feeling at all in me hand, until they went fishing. My
father used to go fishing and we used to go with 'em. My mother used to do it as well. And,
uh, we had chocolate biscuits and it was hot, and a bee landed on my fi- on this little
finger, I didn't have this splint then. Uh, it stung me on this finger, it swelled up, but I felt it.

How old were you?

Oh God, I don't know. I must have been quite young. But if it, like, if it goes cold I don't feel
it. And I broke- round here I broke me arm a few years ago, this one. I always fall- seem to
33

fall on my right side, which is a good thing for me because I don't want to hurt my good
side! And I didn't know I broke it, but I knew I'd done something because it wasn't in a
normal position.

Right, so you couldn't feel it, that it was broken?

No. I had no pain at all.

And what, you went to the hospital, and..?

They took me to the hospital and I had broke it, but I was six weeks, virtually twelve weeks
in plaster. Not eight weeks. Twelve weeks. It's probably because I couldn't use the arm. I
can use it a lot more now. Even out the splint I can use it a lot more. Cos I've got lever
handles for taps and that. Not a ball handle doors, but lever handles on doors I can
Where we are now, they- we had to have new doors, we had new PVC doors. We had
wooden doors, and they come to us to see what we needed. And I knew that I can't lock
her mother's door, because that- she has to hold the handle up and then lock the door, but
we don't, we lift the handle up, let go and lock the door.

How would things have been different for you, apart from, um- in terms of your condition?
What about, like, in terms of society and maybe, I dont know options for you and stuff like
that, how do-?

That- it'd be different, because even with the children, you'd be mixed in with the, like this
school has disabled and able-bodied children together, in this school. So they just have a
TA and
34

Mhmm. How about in terms of, uhm, assistance and benefits and stuff like that? How do
you think that's different, or how that would be for you?

That's different because I get at the moment, I get the DLA, and at first I didn't get it at all
until I came up here. Then I could only get the Mobility Allowance, I didn't get the care or
the- and that, but now I get both.

Are you kind of- is there a part of you that is glad that you're different and that's glad that
you're own unique person?

Yes I am.

Would you change things, if you could?

No. No.

That's really good. Because I don't think there are many people without disabilities who
would really be able to say that, you know.

But some, how can I explain it, some can't do so much for their selves because their
parents have done a lot. And that's not good. Best to let 'em do. Cos I have a saying, if I
need he- if I go anywhere and I work, even up here, I've said, 'If I want help, I'll ask for it'.
And they leave me to it. And I have to like, if I have a wheelbarrow like, at home I've got a
wheelbarrow and it's got- I bought one and it was- had one wheel, then I looked and then it

35

does- then another wheel you could add to it, so I added that. But I had to have a- didn't
have an adaption for it, but I had to put a handle across...

Between the two at the front?

Between the two at- two front, so I could hold it with one hand. And I did that and then it's
fine, I can use it.

What do you think the future holds for you?

I'm here! [laughs] Better here than... cos my family's getting old- my brothers are getting
older now and...I think my older brother is 67 now, I think.

You like living in the village?

Oh yeah, I've always lived in a village, so I don't know any different.

Is there anything we haven't spoken about that you'd like to add?

Uh, I've had operations on me, on me- for me hand and me leg.

When was- when did they start? When was this, at first?

They start- did it when I was down in Kent first on my Achilles tendon and my toe, cos it
turned, it crossed over like, or no, over like that. Big toe crossed over and that. And thenbut they didn't do anything with this hand at all, until I came up here. And they didn't- they
36

told me that, cos I could use this hand to start off with and that, but my thumb has always
been like that as far as I know. But it wasn't always. They found out when they did it, put it
to a thing, that it was dislocated, but I wouldn't feel it because the nerves are not working,
you know what I mean? Because it would hurt if it was dislocated, wouldn't it?

So what did they- what did they do then, to..?

They- my thumb, my wrist is like that, uh, but they put- the thumb was like that a lot of the
time, so they... I don't know what they did, but they put it there so it was there, so it was
useable.

Oh ok. And that was a help was it?

Yes.

And you said they-

That was done at Hinchingbrook.

Oh ok. You said they- when you were younger, they lengthened your Achilles or
something?

No, Achilles tendon. The one that goes up the back.

Achilles tendon, right.

37

Cos that was shorter.

Mhmm, and that gave you freedom of movement did it?

Yes.

Brilliant.

'Cos I was walking on me- some pe- some disabled walk on their toes, and that's what the
problem is. It's their Achilles tendon is short.

Right. And I imagine that has knock on effects with like posture and your back and stuff
and creates longer term problems. Cool.

Yes. But they said I would never walk without callipers. But I have. So they don't know,
they don't- then, they didn't- they- even now they don't know if things

They don't know the capabilities of uh

Of the individual person.

Did you ever have callipers?

No. Never. Ive never had sticks, I've had people say, 'Why don't you use a stick?' and I
said,' I don't. But I do now when it's icy, cos of slipping over.

38

Yeah. Yeah, that's a good idea.

When it's very icy, when it's snowy. When it's frosty I don't, but when it's snowy I don'tdo.I'll be in a wheelchair if I break my right- left leg, for definite. Without- they wouldn'teven if they tried to get me to walk, I'd say no because my right leg can't put up with the
weight of my body, cos there's not muscles, it's not there. Cos it's it's smaller, you know
what I mean? Never been

Why do you have a splint on that arm?

To keep my wrist- try to keep my wrist straight, cos it's And not that, its helped with my
fingers, cos I can- when I've got it on, the lift, cos if I'm hol- carrying anything I can't go
down the stairs, so I use the lift, but I can press a button with that

Do you wear that all the time?

Monday to Friday. I don't wear it at the weekend usually. And I can use it, like lever- cos
now we've got lever handles, lever doors and that I can use it. I can put it on them. That's
why- cos we have the taps that turn like that, and I couldn't do that with that one, cos I
haven't got that movement.

Anything else you'd like to add?

No I think that's...that's it I think. I think!

39