Would you be able to tell us a little bit about your disability or your health issue?

Yeah Ive got spina bifida.

Would you be able to explain that? Sorry Im not really....
It just means that I cant walk, and Ive got a curved back and I am incontinent with
my bowels and waterworks so Ive got a bag for my water and then I just sit on a pad
and if Im dirty I just do it in the pad and then I get carers to come and change me
later on. Cause I cant do it on my own.
Where were you born?
Malta.
Malta? Really?
Yes my dad was in the Air Force.
Yeah?
Yeah?
Oh thats good did you stay in Malta for long?
I was about 6 weeks old I think when I come home.
Yeah? Em, where were you living when you moved back here?
I think we were, Im not sure think we were with my mums mum and dad or my dads
mum and dad I cant remember now, I dont know.
What did your parents or your guardians do?
My dad used to work for the newspaper, Cambridge Evening News, and em my
mum didnt....well my mum didnt have a job cause she had me to look after. Before
he went to the Cambridge Evening News he worked at Gerrards which is not there
now its in Cambridge.
I dont know what Gerrards is.
Its like a printing firm.
Oh right ok.
Whereabouts in Cambridge did you live then?
I live Peverel Road, just up in between near the football ground and the airport. You
know if you go Barnwell, where Barnwell Community Centre is? You can see that
from my house, well my stepmothers house.

How many brothers and sisters did you have?

Ive got one sister and two half brothers.
Yeah what was that like growing up with them?
Well I didnt see my sister very often because I was at boarding school so you would
only see her, Id only see her, about once a month when my dad came, she came
down with my dad. And then I would obviously see her at home. But when my
stepbrothers were born I was here because my dad divorced, first my mum and he
got married in 79, well I was here then so yes, it was alright.
So your stepbrothers they were much younger than you then?
Yes. Theyre in their 30s.
Do you still keep in contact.
Yes I saw one of them Sunday em and I dont see the other one very often cause he
works in London.
Did any members of your family have a disability or health condition as well or was it
just yourself?
Just me.
What was your house like?
Yes two up two down, I mean, my dad had to carry me upstairs because there was
nothing there, no lift or anything, and he was the sort of person that wouldnt ask for
any help but cause on the stairs you only had one railing didnt you on this side
usually but they put another one this side on the wall, and he made me a ramp to go
outside the front door. So I could just rollgo in.
So the house, it wasnt really tailored to your needs?
No. No cause that was built long before I suppose they thought about things like that.
Do you know what sort of medical treatment you were given when you were
born? Like, what did they, what treatment did they offer in those days?
Well when II dont think I had any when I was first... came home, cause that was
probably why I came home but Ive had operations on my ankles to straighten my
feet up, Ive had one on my stomach obviously for my urine, em... and Ive had, they
are the two major ones I think I had.
Well probably come to those as we go through...

And also like I say, Ive got this dip in my side which is to do with my curvature in my
backwhich I do think has got worse because I seem to be leaning over more on
my right side than what I used to.
What were your parents attitudes towards your disabilities?
Well see because I wasnt at home I dont really know but from what I can work out,
from what I can anticipate, think about myself, em.. when my mum and dad split my
mum didnt want me, she only wanted my sister. Now my dad was always the one to
bath me, change my bag and do anything, she wouldnt do it. So whether.. she
didnt, I dont know, it was never ever said. You know, I mean this is what my sister
told me, she wanted me to stay with my dad and my sister go to my mum and my
dad said no. He was going to have us both. Im glad he did!
What about your siblings, how did, I know your brothers were younger, but....
Oh they dont mind, they are fine about it.
Never treated you any differently?
No I mean Ive got cousins, nieces, great nieces and great nephews and they dont,
the eldest one is 5 in fact the other day I wasnt there and he done it but he was at
my sisters and he got a trolley, one of these little trolleys that you push about in, and
he was sitting in it so my sister turned round to him and she said Mason what are
you doing? So he said, Im being like aunty Susan! Theyre not bothered.
Thats really good. Can you tell me something about your early childhood, anything
that you can remember or?
Well like I said cause I wasnt at home, only during the weekend, holiday times, I
mean I suppose it was alright... but I mean my dad was out of work and I mean my
mum was there but they would never argue in front of us it was always when we
were gone to bed and you could sit and lay upstairs and listen and hear them
arguing. The only time it was stop was if my dad took the dog out for a walk. And
then it would start again.
And what was your childhood like at the boarding school?
Yeah that was alright because they taught you to do things that to be independent
which is what I can do anyway, I mean obviously there were some things I still
couldnt do at boarding school which they had to do but thats what, thats why you
went there you know, well they taught you to be as independent as possible because
you were disabled you werent going to sit around and do nothing, you know, you
had to....
Did you have the chance to play and things like that though?

Yeah well yeah in the school time... but when we went back, cause we had our
dormitories and that which was on the opposite side of the school because there was
three parts - there was the hospital side, then there was another side, the ambulance
side, now if you were on the hospital side which is where I was for my operation,
they would do schooling on the wards and then when you went to the other side,
there was on, there was class, classrooms where you went to school and then there
was a playground that we had at playtime. But at night they used to let you go out
where you live for a little while but they couldnt do nothing there wasnt a lot to do.
Where was it? What was the name of it?
Chailey Heritage, East Sussex. Chailey Heritage Craft School, near Lewes,
Haywards Heath way.
What age did you go there?
Em... lets see I went to .... I dont know I dont know what age I was there. I should
think about 6 or 7 because I used to, when I first started going to school I went to
school in Cambridge called Roger Ascham.
Yes thats shut down now I think, recently.
Yes well I went to school there, first off, because theyd also got a, like a
physiotherapy place there where you could have physio, so I was there for about a
year or so and then they got me into Chailey because like I said there wasnt any
schools set up to take disabled people, I think that was the nearest one.
So what year would that have been do you think that you went to Roger
Ascham?
Well lets think I was ...... em, 59? I should think it would have been about.... must
have been about 61 or 62 I would have thought?
When were you born?
59, 55! Thats my sister 59.
What was your date of birth?
20/2/55.
Do you know, can you, what was your earliest memory? Do you know?
Oh yeah I mean playing outside with my sister and that, in the garden, and going for
walks with her and wed go and see my nan and when my mum left we used to go
and see my nana and granddad I would stay with them and....
Was your sister older than you?
No shes younger than me, shes 4 years younger than me.
4

Oh right, ok.
She was only 7 when my mum left. So I would have been, I think I was 12, just
turned 12 when she left but I wasnt at home you see so I didnt know a lot about it,
and my Dad couldnt tell me, he, when they used to write me letters he used to,
instead of saying love from every... he would say love from all and that was because
he couldnt face telling me that shed left him so they had to get the sister, Ill always
remember it, we were making Easter bonnets for Easter that year and she came out
and called me out to the flat and she told me up there, I cried my eyes out. Ill always
remember that. But he couldnt tell me, I suppose he didnt know how I would take it.
Or how to do it. So yes.
What sort of toys or games did you play with?
Em dolls, em, oh just ordinary toys, like er... Monopoly, ludo, card games..
And what sort of food did you like to eat?
I like anything savoury.
You havent got a sweet tooth.
No.
What was your favourite, I know its anything but....
Sausage rolls.
Sausage rolls!
Was there anything you watched on television if you had one?
Yeah I watch Emmerdale, I watch EastEnders and then I usually watch any like
police programmes or .....
Like CSI and stuff like that.
Yeah and em I like watching these Helicopter Hero things.. the, I like watching things
like that.
What about when you were younger?
Oh yeah I used to watch things like Dixon of Dock Green, Crossroads..
What was Christmas like at your house when you were younger?
Yeah, like I said, I cant remember a lot about it when they were together, but when
theyd split and there was just me and my dad and my sister, yeah we had good
ones and wed either, you know, those days, people used to tend to mix more so you
would have your aunts and uncles they would come over and youd end up having a
5

party over there, and you know.. I cant remember a lot about early years with my
mum obviously she must have been there at some stage but I cant remember.
If you cant remember that bit just tell us the bits you can remember, it doesnt have
to be.....
I can remember the bits when we were on our own, just me and my sister and my
Dad and like I say we would either go down my nans or on Boxing day they would
come up to ours so yeah.... it was good fun.
Getting together. What about Easter, what was that like, did you celebrate it or...?
Yeah, yeah. Well we used to but obviously well I dont like well I suppose when I was
younger I used to eat a lot of chocolate but I dont now so it dont really mean a lot to
me now but obviously we all get together because of my nephews and my great
nephews.
Yeah people dont really tend to celebrate Easter anymore.
No, well we have a party... like we have a buffet round at my sisters which the kids
like.
Does your sister live far from you?
Haverhill.
I dont know where that is.
Its about three quarters of an hour from here. On the way to Bury, Bury St Edmunds.
Did you celebrate Bonfire night?
Yes we used to, when I was at school, we used to have Bonfire night every year, one
of the staff, a couple of staff would do a big bonfire for us and fireworks.
Did you have any childhood illnesses like chicken pox or measles?
Yes chicken pox, Ive had chicken pox, Ive had measles, Ive had mumps I think
thats all. Yeah Ive had them all. Yeah chicken pox, mumps and measles, Ive had
them.
Do you have any memories of being ill like that when you were a kid?
Yeah, especially the measles I think it was. I remember lying in bed cause they used
to put calamine lotion on you then and I used to itch like hell, ooh, ... but yes I was at
school when I got all my illnesses. And I know when I had mumps because I still get
it now, sometimes if I am eating something and I laugh, someone makes me smile or
something, I get a pain right round here and Im sure its because I had mumps.

I know you said you went to school in a boarding school, do you know how old you
were when you started.
About 6 or 7
6 or 7 and how did you feel on your first day?
Oh I cant remember but I suppose like anybody you know, cause it was so far away
and my dad was leaving me down there.
Can I ask a question? How did you feel knowing that you were at the boarding
school but your sister got to stay at home, how did that make you feel?
Well it didnt, I wanted to be at home with her, because I... alright we see each other
more now because I am here and she is not that far but in all the years up til I was
17 from say 6, say from about 6 til I was 17, I was at school so I would only see her
like 4 times a year when it was holiday times or when they came down to see me
which was once a month. So I really didnt know her all that well, you know, I couldnt
be at home with her but its not like you get to know someone, be with someone.
Did you not kind of like resent it though like, like why did I have to go away?
Yeah.
Yeah that must have been hard.
Yeah especially, especially when they started integrating people into schools, that
was really tough cause you know I often used to create about that you know if...
cause I think I could have been better .. now cause Ive always said even now I
mean I am not that good at talking Im quite shy and that, but and Ive always said its
because I went to boarding with disabled sort of people like me, I wasnt put into a
school where there was able bodied people.
Ive heard other people say that as well.
Oh good Im glad Im not the only one.
Yeah they didnt go to boarding school or anything but they did have similar
experiences they werent able to go to a mainstream school. Em it says how did you
get to school but you lived there so....
Well I lived there, term time and then because it was so far away what they used to
do is they used to take us to London somewhere in London I cant remember where
it was now and your parents would meet you up in London, because in those days
there wasnt the motorways so it would take at least 4 hours to get down there.
Yeah did you go by train?
No I went by car.
7

By car, alright yeah.

Yeah because my dad used to take me back and em... yeah it took, so I think I was
probably down there about before 63, because remember that bad winter?
Yes Ive heard about that.
I think we got stuck in that if I can remember, so I was there before 63, either 62 or
63 I should think yeah because my dad had a shovel in the car!
A shovel?
Yeah to shovel us out.
Would you be able to tell us something about your teachers, did you get on with
them or was there one that stood out that you really liked or?
No we had... well I suppose I got on with most of them, the only one I didnt like was
our music teacher, I couldnt stand him, but yeah, I mean I cant remember a lot
about them but they seemed to be alright.
What sort of lessons did you do at school?
Maths, English, art, geography, religious instruction, history, all the things..
Quite a lot then. What was your favourite subjects, what ones did you enjoy?
I used to... I like English, oh we done domestic science and I liked that.
Whats domestic science?
Em... cookery. Thats what it was when I was at school and they, you know, we used
to have like a, they done like some of the lessons where you could choose an activity
you wanted to do so... like it was an activity week, couple of lessons and I would do
things like archery, javelin, gardening, things like that.
Were you good at archery?
Yeah I werent bad. I only ever done it once or twice I havent done it since.
I only asked cause my brother recently got a bow and some arrows and....
We had a... little while ago we went to an open day or a disability sports day in
Cambridge somewhere and you had to put your name down for what you wanted to
do and I wanted to do archery, I though oh I havent tried that for ages, not since Ive
been at school, but hed forgot to bring his archery bows so what he done, he had
these little things that have got suction pads on the ends so......that werent the
same, I wanted to do archery!
I cant believe he forgot it [laughing]
8

Yeah he forgot it!

What friends did you make, like what sort of friends did you have?
Yeah I had quite a few.
Yeah?
Yeah Ive lost contact with most of them now, theres one I am still in contact with but
at the moment I cant seem to get hold of her, I dont know why, I wrote to her at
Christmas and sent her a Christmas and birthday card, she hasnt, didnt send me
one this year em... but I dont know whether shes not getting the letters or not, Im
not sure, but shes got an email address I might have to look it up on the internet.
Cause Ive got a laptop, not a laptop, an iPad, I might have to look it up on there and
see if I can find it cause I would like to keep in contact with her because shes about
19 days younger than me, older than me, thats all. Yeah.
So you are only really in touch with that one.
Yeah, I mean I did, I mean I can ask how some of the others are through her, and
they will tell me if anything has happened yeah. I keep in touch with one or two, there
was quite a few of us that was, like a group of us.
Oh thats good! [laughing]. Was there any bullying at your school?
No, not that I know of.
Oh thats good [laughing].
No I dont think that started about then.
How did your disability affect your childhood?
Well obviously I couldnt get onto public transport, if I wanted to anywhere... although
they didnt really let you out on your own, I couldnt go out on my own.
Why werent you allowed out on your own?
Cause they wouldnt let you, cause..... they just wouldnt let us because we were
school children. I suppose they thought.. I mean we could have gone down to the
shop and back again but, they usually sent somebody with you. But they never took
us out anywhere, oh yes we did, once a year we went to Littlehampton, a day trip but
you know, like if and, like toileting and things like that because Ive got my bag I cant
get, because Ive got my legs on this board, I cant get to the toilet and I cant get out
of my chair onto the toilet, so unless the toilet was wide enough both sides so I could
either back in or go that way I couldnt really do anything and many times Ive had
problems like that when you cant go in, I can get in toilet but cant get to empty it.
Living like that did it make you and your friends segregated?
9

Yeah because you know, especially if I used to go out like and I wanted, when I used
to go out to places like nightclubs and that with a friend of mine, I would try not to
drink too much because I know I would probably want to go to the toilet and I
couldnt. So you know, you restrict yourself. And you shouldnt have to do that.
No you shouldnt.
I mean its like when I used to go to concerts and that, its the same thing there,
alright theyve done it out now so you can, the toilets are bigger but before if you
couldnt get in you couldnt go.
Theres no thought for nothing...
And then of course if you are having to go in by taxi, because your bags probably
full youve got to be careful you dont pull it off because if you pull it off its going to
mess his car up and then youll probably end up having to pay more to get the car
cleaned. So... its not a good idea.
Not only if anything did happen to your bag, I dont know, it would make me feel
like...
Because Ive got to put it back on and the people would all be walking about.
Its not fair
Not its not.
You said you were at hospital when you were at boarding school, did you go to
hospitals quite a lot?
Yeah and I went over the, I was over there first off because I had my stomach done
and then em I suppose when you.... when you got to 11 you probably went over to
the other side because that was like secondary school and youd only go over there
if you were ill or like you needed an operation and youd only go over there if you
were ill or like you needed an operation I didnt need many after that but I had my
heels done, my stomach done, in fact I had my stomach, my stomach I didnt have
done at school I had to go to London and have that done and I had to go twice to get
it done.
Whereabouts in London can you remember?
Barts. I went there. Twice I had to go and get that redone because it kind of, my loop
decided it, to contract itself inside to me and it used to give me a lot of pain and oh it
was awful so I had to have it done and I was about, I must have been about 13 or 14
when that happened.
And how long would you spend in hospital with these operations?

10

Well when I had my heels done obviously I was in the ward so youd stay there so
you would have schooling on the wards and I suppose youd stay in bed, do
schooling but in bed till you were able enough get up.
So what was the longest period you were stuck in hospital for?
Well apart from being at school the longest one I think was when I went to London,
went to Barts, cause I think that was quite a few weeks. Because I had to go twice
and cant remember how long, I was in there for quite a while I think.
Yeah. Did you have anything to keep you entertained while you were in there?
No, cause there again, I ended up because they hadnt got a childrens ward, I
ended up being on an adult ward.
Alright.
Which alright wasnt bad because they looked after you, they all fussed round you
cause you were only a child, but you know, theres not a lot you could do.
So what would you say your feelings about your childhood are now, did you think it
was good, bad, could have been better?
Em yeah I think it could have been, it had, like had they been integrated into schools
I think Id have been better off what I was.. cause then you mix with different people
and you get to know and people that are not disabled, would get more used to you
because a lot of it when I was younger people used to come up to you and look at
you and say, and you know they want to ask you something....
especially kids...
Yeah I mean I still get it even now.... adults not so many kids.
Ok really?
Yeah I had it the other day
What happens?
I cant remember... I was walking, I was going somewhere I cant think of where it
was and there was this child with presumably her mother, she, the child went walking
off and the mother was looking back and I was thinking yes? But she never said
nothing.
How does that make you feel?
Horrible! You know cause it makes you, it makes you feel as though youve got two
heads or something you know youre not normal, alright Im as normal as anybody
but its just that things I can do are different to how you can do it. Not so much, kids
will ask, I mean children I dont even know come up and talk to me now.
11

But theyre innocent though arent they?

Theyre innocent and they just say.... or they just say whats wrong with you? Why
are you in that? And I just say because my legs dont work and then they are
satisfied and they go away.
Yeah but you think adults would know, to make someone feel awkward I think... they
shouldnt be saying nothing. What sort of things did you get up to when you became
a teenager?
Well I used to go out, when I first came here they used to have a bus because they
used to have a bus that took us to work... and that bus had to be used every day of
the week to take us to activities it was run by Cambridge County Council they made
sure it was run so there used to be athletics on ... no there werent there was
athletics on a Thursday, swimming on a Wednesday, archery on a Monday, cant
remember..... PHAB Club on Tuesday and PHAB club on Friday so thats another
thing theyve stopped all that.
PHAB club? What was that?
It was where disabled and able bodied people meet together and done, played
games watched films or go out, the one in Cambridge is still going, its a Raffle Club,
but thats where they have it as well. Thats where the Papworth Centre is.
How often would that be on?
That was every week.
Every week?
Twice a week used to go Tuesdays and Fridays. But there was something on every
night. And then they slowly took it all off. And they stopped the drivers doing anything
for us. Like if on a weekend if we wanted to go out, they would say yeah ok you sort
it all out and we will get the tickets for you and you sort out the people that want to
go, talk to the driver, find out how much its going to cost and all this that and the
other, which we used to do and one of the staff would get the tickets for us. I mean I
done a trip, I got a trip up to Brands Hatch one year, I wanted to go to Silverstone but
they said it was too expensive!
So this was when you came to Papworth?
Yes.
You were 17 is that right?
Yes.
How did you come to Papworth, how did that happen?

12

Because there was nowhere I could get a job, I couldnt go say to a shop or anything
because they didnt integrate you into shops, this was all set up here, it was set up
for the TB people and then in 65 I think it was, have you seen that leaflet, Ill show
you, I think Ive got it with me, oh no I havent Ill show you when we come out. Its a
booklet, its Papworth Heritage or the archives or something and it tells you a bit
about it and it started as a TB place and then in, I think it was 65 they gave it over to
the disabled so the people that had got TB were still working in the factories but they
were integrating people that hadnt had TB but were disabled here, and a lot of, all
these houses werent here, the only houses that were here were along the main
road, north and south. And you only lived in Papworth if you worked in Papworth,
thats how it was when I first came here and of course theyve now built all these
other houses.
So did you have a job when you came here or did you come here and then they
got you a job.
No I came here, I hadnt got a job, how they used to do it when you come here, you
come for three days, em you had to see the doctor, so he could pass you medically
fit for work and then they decide what you want, I couldve gone straight into the
industries but I decided I didnt want to, wish I had of done now, so I went up and I
worked in like the occupational therapy place where you just like folded files and
things like that and you didnt get a lot, the most you got was about 1.50 a week or
something, when you first started I think it was about 20p but then I decided I had
had enough of that and we used to do shields thatand em, they used to have an
assisted place down in A? But I dont know if that is still about I think they lost, broke
off with them cause they used to take some of our work down there for them and
they used to bring some of their work up here for us. Em, so em... so I cant
remember what I was saying now?
Did you want to come to Papworth? Were you happy with that?
I didnt really have a lot of choice, I wasnt, it was done through my social services.
Right.
I mean because I should have left school at 16 but because the person that was in
my room wasnt well enough or she....I dont know, something was wrong which was
why I couldnt come which really annoyed me, it means I had to stay at school for an
extra year which I was not happy about. So I said ok but once Im 17 I am leaving, I
am not staying until the summer, because my birthday is in February you couldnt
leave until the summer holidays, I said once Im 17, Im out! And I was. And I will
always remember, I was ill that day, I got such a bad neck and people kept saying to
me, oh youll be awfully upset when you leave, well cry I said dont be so stupid!
Well I did but that was because I was in pain! Not because I was leaving believe you
me! And then I went... and then I still couldnt get here when I first came, left school,
so my dad, they got me into a place in Clacton, I cant remember, it was on the sea
13

front, it was a holiday home and it was run by, they were called house mothers and
house fathers and I went down there for a month and then I come home and then I
obviously got a place here but at first I was coming in daily. Coming in by taxi.
Was this from Cambridge where you lived with your Dad?
It was only about 20 minutes. Yes I was coming in from Cambridge and then I got in,
I cant remember when it was I got in, I cant remember when it was I come in. And
then I came in and then obviously they, I decided to move, or they decided to move
me for being in the industries and I went to light engineering which was in 75 and
what you had to do is, do all different jobs and I think you had to do that for 6 months
and then you had what was called colonized which meant you were trained enough
to do things, yeah, and then I went into electronics. When light engineering packed
up electronics got started up and I went over to that. And I was there until July, June
2008 I was in there, 28 June 2001 they made me redundant, they made me
redundant.
Did you ever get up to any mischief when you were younger?
Yes!
What sort of things did you do?
We used to like I remember once we were in the Guides or was it the Brownies, no
the Guides, and there was a few of us and we made some stuff, I dont know what it
was and we left it in a pot, we left it outside or I would get, in the bathroom down in
the bathroom we had benches like this... and I would get someone in the chair one of
those wheelchairs and I would tip it up so they were lying down and I would say see
ya! And leave them.
How long did you leave them for?
Not long I think somebody went and found them, one of the nurses probably did!
What was your record though was it like 5 mins, 10 mins?
Yeah something like that but my school record wasnt very good I hated school I
must admit.
I can understand why you hated school it sounds really bad.
Thats why in a way what theyre doing now over at Saxongate Im not really that
enthralled because its like going back to school, well its like going to school and
going to college and do it the only thing is you dont have to pay for it social services
do but its not the same as having a full days work.
Plus daytime TV is really bad!
Well I tell you what I am getting that bored sometimes I am starting to watch it.
14

Thats boredom!
That is bad!
Do you like to read?
No, I cant stand reading. And everybody says thats a good pastime, but I just cant
get into books. Magazines or something yes I can read that, you give me a book. I
mean Ive got a couple of books and I have started reading one of them but Ive just
given up and it was somebodys autobiography and they said please read it. And I
said yes I will but I havent. I read a third of it.
What sort of magazines do you read?
Er like Womans Own, Womans Weekly and things like that.
Do you get OK and those sorts of things?
No I dont like those ones.
Did you ever go to the cinema when you were a teenager?
Yes.
What sort of movies would you go and watch?
Er.... Paint Your Wagon, Battle of Britain, er what else, er we went to see loads,
Saturday Night Fever, I went with a friend of mine, em but most of them I used to go
with my dad and they used to make him take me out my chair and put me on a seat
and because my legs dont bend he used to have to tell them to step over my legs
and what they would do is they would walk past, walk into you so I was sitting here
and Im slowly going that way cause they are walking into my legs. And yet I thought
I would have been better sitting in a chair cause you are easier to get out but no they
wouldnt let you sit in a chair.
Was there any particular reason for that?
No I, well, I think they said it was health and safety, but the thing is surely I would
have been better getting, sitting in a chair so somebody has just got to pull the chair
back than lift me from the chair into the seat and you are holding everybody else up
then.
Like you said youre a shy person so I know how awkward that can feel.
And nine times out of ten I couldnt see the film because I was too short. And I would
get someone high and it would be thats it I cant see and its the same if I go to
concerts now. Even now when I go to Cambridge, or I havent been for a little while, I
went, when did I...couple of years ago I think I went to one. And Ive been to it before
and I should have realised because it was the same, do the same routine as to what
15

I have always been doing. I should have realised that once hed started singing a
certain song everybody would stand up. That was it and they would not let you go up
the front, theyd have a door here a load of chairs there, a space here for the
wheelchairs and a load of chairs here why they wouldnt put you up the front I dont
know.
Is that recently as well?
Its always been like that. Cause theres times and times Ive complained about it.
So like a disabled person or person with disability wanted to go and watch
something...
Theyd have to...unless they can get out their chair they could probably sit in a seat
somewhere but if they were in a chair and couldnt get out theres a designated area
for chairs which was in between a row of seats.
Do you remember any big news event or anything from your early adulthood,
anything that stuck out?
Yes, John Lennon getting shot.... the em... moon landing, although I think I was still
at school then, just left school. Yeah John Lennon getting shot, Princess Diana
getting shot, killed. And that, I have heard of others but I dont think I was about but,
they were probably I have heard of when Buddy Holly died and that he died the year
I was born so I dont remember but I know when it was because Ive had people tell
me. And like Glenn Miller and that but I dont know when they were.
Did you ever go on holiday?
Yes.
With your family or with friends?
Yes we used to go er... to a caravan down in Stiffkey which is up the top, near WellsOn-Sea, its up the top there somewhere, whenever I say it no-one has ever heard of
it but I can find it on a map for you! Yeah we had a caravan, in fact Ive got pictures
of us. There was me, my mum my dad, my aunt, my uncle, my granddad, my
grandma all standing outside the caravan.
With your family?
Yeah!
Did you ever go on holiday with your friends?
Yes when I came here we did.
Yeah? Whered you go?

16

Em Ive been to Denmark, Spain, Greece, Corfu, Malta...Portugal, but then you see
we used to have, there used to be organisations that used to take groups of disabled
people out but you know they just take volunteers with you, but because everything
has gone health and safety daft its all got stopped. Now there is a place where I
could go, hes got his own holiday home, he lives out in Spain I think with his
girlfriend and they still do holidays for disabled, but I have then got to go out there on
my own on the plane and meet them the other end.
Is there... cause Ive been on planes before it doesnt seem very easy to get on it.
Theyre not, theyre terrible.
Yeah..
Because I dont like getting tipped back in my chair where I have to look up cause I
go dizzy and thats what happens when you go on these chairs that they give you.
So I used to always try and make sure I could get carried up by somebody or they
used to say they couldnt but I did. Cause Id just go dizzy and then of course there
again, if its a long journey, its toileting purposes youve got trouble with cause you
cant get in the toilet and you cant get to the seat.
Cause Ive never really thought about it to be honest with you before..
I have like decided, people say disabled for going out to America, its good for the
disabled, Id like to go out there but I just couldnt put up with the travel thats what, I
just couldnt stand it. Four hours is about all I can take cause you havent got a lot of
room either.. and you just cant...
Where was your favourite place to go?
Malta.
Malta.
But thats because I was born out there and I always wanted to go back and see
where I was born. Its funny cause I dont know whether they do it anyway but that
was... I hadnt got a passport by then and I needed a passport to go out obviously so
I had to get a passport and I think they wanted to know what holiday you were doing
and it happened to be Malta. Now I dont know that was because of where I was
born but they then wanted to know my mums nationality, my dads nationality, if I
wanted dual nation, dual... thing, which I didnt cause I got no friends out there I
mean my dad did cause he, they used to live with them, but yeah they were both
English, it was only because he was in the Air Force.
Yeah..Did you used to go shopping? Like I dont know, girly stuff, like clothes
shopping, or you know...?
I do here.
17

You do. What sort of shops do you like to go to?

Ive taken myself off to Cambridge before now and I go like down the Grafton Centre,
Ive been down Lion Yard on my own, mind you this was years ago I wouldnt try and
do it now. Although going shopping is not too bad but if I want to go food shopping
because of carrying stuff and nine times out of 10 all the stuff I want is up high so I
need somebody with me anyway, theres a woman that works, she used to work with
Papworth but she doesnt now, she works on her own and its called Support for Fun
its called. And what you do is, she will take you out, I dont think she charges to take
you there, but then she charges you for the time you are there for the time she brings
you back so shell help you do whatever you want and if you need any toileting or
something, shell also do that, shes taken me to concerts before now. Shes taken
me to football matches before now.
What football matches have you been to see?
Er Cambridge United.
Oh class.
Ive been to see Cambridge play Ipswich em, I been to Norwich but that was with her
I went to Norwich but yeah I used to go and see Cambridge United quite a lot.
You like football?
Yeah. But then that was because I had a favourite football player at the time!
[laughing] so I had to go and see him! That was my excuse and I stuck to it!
Did you used to have pocket money to spend obviously before you got a job and
that?
Well only what my dad probably would give me. I mean and then I kind of when I
came here, what little money I had, I kind of saved up because Im quite good at
saving so I ended up saving quite a bit. Which at the time didnt matter because I
didnt have any benefits only mobility which is not taxed, its only when, and then
when I went into Robert Ellis, which is no longer there, my local authority were
paying my rent half and half. So I was still alright I could save as much as I wanted
and they wouldnt touch it but then, er.. the local authority decided they werent going
to pay their half, or they werent going to pay as much, I think they were pleading
poverty, so they got me to pay more but to do it, they put me on income support,
which is when they wanted to know how much savings Id got when I went mad
basically because I dont think they should know. Even now I dont think they should
know, it gets me so cross. I mean a little while ago I have housing benefit, and a little
while ago somehow , my money got up to over 16,000 and they stopped everything
because Id got over 16,000 and Ive only just managed to get it back because its
now gone down. If it goes up again theyll take it away from me. I think thats totally
wrong. Yet they will willingly give it to somebody else.
18

Did you used to have a bank account.

Yes I have.
No not now, when you were a teenager did you have a bank account?
When I was here I did, well no, at first I didnt then I set one up, but I had a bit of
trouble with it at first so I had to get my dad to sort it out. I went with Girobank which
is now Santander. And Ive been with them ever since. But they werent going to give
me a bank account when I asked for one. So I thought right Im not going to sit and
argue the toss for this Ill ring my dad up get him to do it. They said something about
there was too many disabled or something, I dont know what excuse they gave but
they gave an excuse there was too many, I dont know. Which I thought was a bit
mean, wrong but there.
This would have been when you first came here was it? About early 70s.
Yes 72 but until then obviously I didnt have an account, if I wanted any money my
dad would give me some.
What sort of friends did you have in your teenage years were they still the friends
you had at the boarding school or did when you moved here you made new friends?
Well some of them I knew from here some of them that I knew from school had come
here so I already knew some of them but yes I have made other friends as well but a
lot of them have now passed away unfortunately and I had a real good friend, in fact
he was a bit more than a friend and he passed away 4 years ago and I havent been
able to cope with it since. Which is why I do, which is why I go and help out with
head office. just to give me something extra to do.
Did you have any boyfriends?
Yeah that was him. Until about yeah and he died in 2011.
How old were you, what year, how old were yous when yous met?
Oh Ive known him for years we met when he first came here back in 76 but we
never ever done anything about it then. He liked me I liked him but we never done
anything we left it so long even when we did get together.... it was yeah... then he
died on me.
How did your disability affect your life at this time, when you were a teenager? Do
you feel it?
Yeah because there are things I cant do like em, if I want to go say like to a fair or
something I cant go on any of the rides, I cant get myself out of the chair. Or, like if I
go to concerts. Chances are you are going to be put somewhere where you cant
see. Em... like I said earlier on I went to a motor racing thing on, I set up, we got
19

motor racing group up and we went out motor racing, now a few times they put us at
the back so we could see quite a lot of the track but one year when we went they
decided to put us in the disabled enclosure. You couldnt see nothing! Absolutely
nothing! All you could see was that little bit of track there, it was disgusting. They
seem to have got it in their heads they put you in disabled enclosures, or places for
the disabled and they put them where you cant see everything. I mean alright I went
to, was it last year? Yes last year I think it was I went to er.. the... em whats that
music thing they do on midsummer common?
Was it The Big Weekend?
Yes well I went not this year, last year and they had got a stand, they had made a
platform for you which was good but I think, probably just me but I found it too far
away from the sound, the stage. But you could see everything, but then again you
had that... and then they made you, then in front of where you were sitting they had
like a pen for people that wanted to smoke so they could go in there so you got all
the smoke coming your way!
Not a lot of thought put into it by the sounds of it. So you said you left school when
you were 17, what year would that have been?
72
72 and did you leave with any qualifications?
No. I took the eleven plus and failed that.
And how old were you when you moved out of the family home?
Well I could say from 17 really.
Yeah? So where did you move to?
Here!
Oh yeah sorry! [laughing]
I went on holiday for a month after I left school because there still wasnt any room,
my room wasnt ready there was still somebody in there... and then I came here and
I have been here ever since. Say you come here and you had to see the doctor, he
had to pronounce you were medically fit to work and depending on what your
disability was or how you were is where you went. But then, those times, when I first
came here, you had to do as independent as you possibly could because there was
never, there wasnt anyone having to be put to bed or anything because the staff
used to come on at 7. do what they had to, be around all day, go home at 7 and go
to their home and if you needed them during the night from 7 oclock at night up till 7
oclock in the morning you got a pull cord, you pulled that and it went through to one
of the houses and they would come down and see you.
20

So did you enjoy living here when you were 17? Up until now actually have you
enjoyed living here?
Yeah yeah well theres been times when I thought oh I dont want to stay here, but
yeah there has been things that have made me want to stay.
What sort of things?
Like em meeting friends and that, that Ive made and that and also basically the only
real reason to stay that kept me here really was my job because I knew if I left
anywhere I would lose, I wouldnt have a job. But now I havent got a job anyway
so....
And I have only been around this little bit here but the bits that Ive seen, they have
real good wheelchair access, do you think that makes you enjoy living here, just
knowing that you can go to the shop when you want to.
Well no because where I am, its not that good. Its a road thats not good, they are
not good, no they are not good! Believe you me they have got pot holes everywhere
and they are full up with water, all where I showed you all down Callum Way, well
see it when we go back, the holes have got bigger again and they are just full of
water. Oh these parts are probably better because they are like paving slabs where
all up there is not. To get across Church Lane is horrendous. I hate going across
there I mean when I was over at Mac which was over this side I was more central to
the shop and I used to go down Daintree Close down the side there, where the old
shop used to be, theres some bungalows down the bottom there and there was a
pathway down there and I used to go down there and I didnt mind going down there.
But now youve got to cross the road and its just not, Im scared to death Im going
to tip myself out. Plus the fact you cant see cars coming down that way because
everybody parks up on the road from the hospital. In fact they dont tend to get...
because now theyve gone over to this other thing they have let out they sold a lot of
the stuff off and that, which means they hadnt obviously got so much money so then
they started going wider out into East Anglia and helping people out there but its not
people like me, its physically, learning difficulties what used to be called mentally
disabled when I was at school. Thats what they seem to want to do now, they dont
seem to think about us anymore. And I think thats wrong because we are just as
vulnerable as what they are.
So what changes have you seen happen in the village since youve been here?
Well this last change is the last one when they got rid of all the factories, em... and
theyve took our care staff away... the care staff lost the care.... they have to get an
agency in to do the care, when the staff used to do like things at the weekend or
things, or put things on for us. But wed obviously help out if we wanted to do a
barbeque they would do the barbeque so none of us get burnt or anything, they are
not allowed to do anything like that now, cant have barbeques, they cant do parties
21

for us. We used to have no end... we used to have bonfire parties, we used to have
Christmas parties we used to have em... pizza nights, fish and chips, em... some of
us even went up into somebodys kitchen with some staff, cooked a meal for the rest
of the tenants, you are not allowed to do that now.
So all this activities, all of this stopped because of em.. health and safety?
Yeah! The staff cant do nothing for you now. Thats why I am having so much
trouble, I mean a little while ago when I lost my housing benefit and I needed it back
I had a form that I had to fill in, which they sent me from Cambridge County Council,
now that took me a fortnight to get that filled in. I spoke to my housing officer, she
said she couldnt do it, now whether she couldnt do it or she wouldnt do it I dont
know, she said it would take too long and she hadnt got time so I thought, ok Ill
leave that so I left that then, oh and then I rang up County Council again and I told
them what she told me and he said no they are not allowed to fill it in and Im thinking
hang on, they are housing benefit, they are housing staff people they must be able
to. Anyway, so I said ok well Ill book an appointment and come up there and get it....
so I had to go up to Cambourne which cost me 16, 8 each way to get up to
Cambourne for no more than what 10 minutes and then when I got up there the
woman that helped me fill it in I said to her, could my housing officer have helped me
fill it in and she said yes.
Why did they get rid of the industry here?
I dont know.
They never gave an explanation?
No, they got the CEO, they got CEOs in and thats when it all started going pear
shaped because I suppose cause, well I suppose because its not really a charity as
such was it, now theyve got it more like a charity is supposed to be. I mean charities
dont have workshops and things like that but thats why we were here and like I
said, thats why the industries was there because of the TB people.
When you were working, would you say that your wages were enough to support
you?
Oh yeah, yeah I mean, well I dont know what it was from the start but I know at the
end, towards the end, cause they used to well they ended up paying us monthly,
once my board and everything had got taken out I ended, I was getting half of what I
was earning and I was earning 600 a month and I was getting 300 so that was a
lot of money to lose when I gave up work.
Were you eligible for benefits at this time or any financial help or was this after
you...?

22

Well no I could, I got, I had income support because my local authority decided when
I was over the care home they decided they didnt want to pay all my board, it was
done between me and them and they wanted me to pay most, a lot more so they got
me income support which yeah it was alright but they wanted to know what savings
youd got and thats when I got cross, I said no they are not going to know but theyre
crafty they find out somehow!
Would you say that the benefits were enough to meet your needs?
Oh yeah I mean I dont really I mean I am not alright yes I know Im disabled and
thats what they are there for but Id rather not live on them cause I, just because Im
disabled why should I live on money that the state gives me. I am quite capable of
going out and doing a job. Alright Im probably too old for it now but....
When you were younger..
Yeah.
Did you ever get married?
No.
No. Any children?
No.
Ok how do you think attitudes have changed towards people with disabilities if you
think they have changed?
Well I think since they have integrated people into work places and things like that,
well no, I dont know because this is another thing, when I started work here and I
was working in electronics so lets say thats from 79 they had able bodied people in
there as well. Now the local authority was giving Papworth money to have you here
so because they were giving you money, giving local authority, the local authority
was giving Papworth money to have you here they could have you sitting down in
the workshop doing nothing, because they were getting money for you and yet if you
were an able bodied person, youd end up getting the work because they werent
getting money for you and I thought that was wrong.
So do you think that attitudes have changed?
Well I dont know now because obviously weve not got the factories anymore but I
mean I hope that would be it, that wouldnt work now. Because I know a friend in fact
he ended up getting his own job because when Louie got made redundant we had
employment people to help us find jobs well mine didnt work very well, and he was a
bit nasty... and he went to get this bloke a job and I think when he went to get him
the job, they didnt tell him, they didnt tell the place where he was working that he
was in a wheelchair and the place was upstairs. So he left, I think he worked there
23

for a little while then he ended up getting his own job, and he works at Asda in
Cambridge on the Beehive Centre, works there. But yeah you know you put all these
things down and then you find out you cant get in them because they havent looked
it out properly.
How do you think changes to the government legg.... er help me!
Legislation.
Thank you... have affected people with disabilities?
Well it hasnt really affected me as yet but I dont know whether this new PIP things
going to affect me because when I got mobility allowance you got that if you couldnt
walk within so many yards or whatever it is but I have read somewhere that they
dont do it on that now do they they do it on what you can do and what you cant do
like cooking and things like that well I can do all that so, would I ever get stopped, I
dont know and that is money for transport and things. I dont know I mean, and yes
this bedroom tax I suppose I mean at the moment it hasnt affected me because of
where I am I dont like it because its in a corner like here and I cant see nothing and
I want to go into somewhere I can see more and they said well there is nowhere else
and I said well put me in a 2 bedder and they said no we wont because you will
have to pay for it and you dont need it. I said believe you me I will find the space for
it, I would use it for something but no they wont do it they say... as far as they are
concerned I am suitably housed thats what they told me. So... tough.
Yeah but I dont think thats really fair cause you are kind of restricted...
Well Im isolated...
They have made you feel that way you should be able to live somewhere where you
are comfortable, where you are happy and that means having like a view out of your
window.
When I was over at Mac I could either sit outside on my patio which obviously looked
out onto a little road and some bungalows or I could go outside the front door sit on
the car park and I could see people walking up and down the road talking, I could go
and talk to them or they could come and talk to me. I cant do none of that now. And
the nearest place Ive got to me is Head Office and I cant see any of that cause Ive
got that conifer they said it is, there I dont know what it is, I have asked them if they
would cut it down a bit but as yet nothings got done.
Em what other changes do you think needs to happen to improve the circumstances
of disabled people?
Give them the same opportunities as everybody else. I mean alright yeah admittedly
some you cant, there are some that cant but they shouldnt think everybody is the

24

same like that there are some people that can work and if they want to I think they
should be allowed to.
Do you think it should be done on an individual basis rather than trying to group
everyone together.
Yeah because I mean if... theres a lot of you together they tend to treat you all the
same I mean like I used to go to the PHAB Club now they used to have a lot of them
there that got learning difficulties and then shed end up turning round to me and
talking to me and she would talk to me the same way and I would say hold on a
minute! I ain't one of them, I can understand what you are saying! and that really
gets my nose up.
Does that happen to you a lot?
Not now, I mean....well its like when I go shopping... I take somebody with me so
she can carry my stuff and packs the bags and all that and I pay, now... and I will still
get it now... not so much but I still do get it sometimes... instead of them asking me
for the money they will go and ask her and she will say... ask her. I mean thats like
once my brother in law took me out and em.. wed been shopping it was one
Christmas wed gone shopping and the woman on the counter she turned round to
my brother in law and asked him for the money and my brother in law said well ask
her! You know and Im thinking.... I shout I say Im paying! I am here.
It must be frustrating that people assume because you are in a wheelchair that for
some reason you cant, your brain doesnt work! Yeah.
And that really annoys me, gets me so frustrating.
Its very insulting as well, yeah.. What do you think the future holds for you?
Here not a lot! No not a lot.
Would you ever consider moving out of Papworth.
Well I was cause a little while ago I was not well and I had a drain in my side which
meant I couldnt push it from any long distances like down here and that so I was
basically housebound. Well there was things I needed to have done like letters going
down the doctors and things like that and my sister said she would come over and
do it well that was three quarters of an hour away and I thought well its only for a 5
minute job its not worth it, Ive got to get somebody else to do it and she was looking
for something over at Haverhill for me nearer her, but theres nothing over there. I
think they have got 2 bungalows over there thats under Papworth and they are both
occupied.
Can you only be housed by Papworth?

25

No I dont have to but then you see if I go into a bungalow which will be suitable for
me I dont know whether they would redo all the units and that cause they will all be
too high for me, I think this is another reason why they dont want to move me into
another bungalow because theyve got to redo all the units because they are
probably high enough for an able person thats standing up. I mean I cant use my
cooker over where I am, I can use the cooker but I cant use the hob, the rings
because they are too high! So if I want to put anything on that I either get it so it
doesnt have to go on the hob or do it in the microwave.
Thats really not fair.
Because I darent do it in case, if I burn myself I have, Id have no-one with me. Or I
would have to ring my lifeline, they would probably get a doctor out with the
ambulance and they would turn round and say well why did you do it? And I have
done it before now when I first went over there I got a swing bin and I was making a
cup of tea and I dont know what happened I slipped or something and the teabag or
something splashed, it had got no milk in so the teabag was really hot I had just
taken it out of the cup and that splashed all up me and all down here on my chest
and I told... I was going to card making class at the time and the person that was
doing it she used to be a nurse and so she got quite worried and said youd better go
down the doctors, well take you down the doctors, so I went down the doctors and
they said everything was alright. But you know, no-one else came down with me,
none of the support staff. Well I cant even get any support from them. The only time
I can get support is if I go to one of their support sessions and the only one I can go
to is on a Wednesday afternoon because Im out every other day and then when
they do help you they dont help you that much. Theres not enough people now to
help you and if you ask they will say oh we cant or they are not allowed its so stupid
I mean if they are on a tea break they are obviously not doing anything so I dont see
why they cant but if they get found out, they have to book it down so they can get
paid for it. You cant get anybody now to do anything for you that will say like, say if
you were doing something I wanted something doing or somebody wanted
something doing, youd say well Ill do it in a minute when Ive done this, youd do it,
but they wont do that now its so difficult to get anybody to do anything, its just...
sometimes you feel like you are hitting yourself against a brick wall, its really
frustrating.
Is there anything you would like to add Sue that......
No not really.... no I mean there has to be change... I just wish theyd told us why
they had taken the factories away, what was the idea in it all when we came here for
the work and so now like I say its now gone into a charity like Scope and things like
that so they are doing it like that I mean theyve got rid of a load, I work in Head
Office 2 days a week, two mornings a week and if anybody has got some extra work
they need doing I will do it for them but a little while ago they got rid of a load of them
and made them all redundant so of course all those that went I was getting work
26

from, I havent got no work now. And when I went in there this morning, and Id left
there by half 11, stuck it out till half eleven, I had a cup of tea down there but Id
finished by quarter to eleven because theyd got no more folders or no more papers
so I dont, I am supposed to be going in there Thursday morning but I dont know
whats happening till he rings me and find out. I just want something to do! Cause
when I leave on a Friday, like lets do it on a Friday not today, from a Friday I see my
carer in the morning, I see the district nurse in the morning sometimes, and then I
wont see nobody else til about 8 oclock that night and thats Saturday and Sunday
and Friday, Saturday and Sundays are the worst because I dont see anybody only
my carers. Cause nobody seems to want to mix anymore... I mean I can go over to
the communal room over at Southbrook but a) there is hardly anybody over there
anyway and I couldnt make a drink over there if I wanted it because, cause all the
units are too high, I cant reach it so you might as well stay where you are. But no...
they do what they want. So I dont know. So I am just going to grin and bear it I think,
I mean Im alright over where I am Ive got used to it, I thought it would be the
evening times when I would get really agitated and bored but its not its during the
day. Come 5 oclock Im fine because probably because Ive put the telly on so I
have something else to take my mind off things.
Alright well end it there......

27