Ok, Jo, thank you for being here today, to begin with please can you tell me a little

bit
about your disability or health issue please?

My disability is called athetoid cerebral palsy, which means I have got limited use of
my limbs and I am on medication for my control and I have difficulty in walking and
my speech is very difficult to get through sometimes, but not always.

Thank you. So going back to the beginning, when were you born?

I was born 11th May 1972 in Peterborough Maternity Unit, Peterborough, Special
Care unit, because when I was born I was very very ill and it was lack of oxygen that
caused the damage to my brain and that is why my condition is called Cerebral
palsy,

Where did you live when you were born?

I lived with mum and dad at 55 The Grove, Market Deeping, Peterborough.

What did your mother and father do for a living?

My mother was a cleaner and she still is; my dad was a dumper truck driver.

Did you have any brothers or sisters?

I have got three sisters.

Are they older or younger than you?

Two older, one younger.

Did anybody else in your family have a disability?

No.

Immediately after you were born what medical attention did you get, or that you can
remember?

My mum got, well, she didnt really get much help but I had physiotherapy and
speech therapy but she had, she had to get a major buggy for me because at that
time my limbs were too weak to sit up and my walking when I were born I couldnt
talk as well as I can now.

What was the attitude of your mum and dad to your disability?

They coped with it and they helped me in the best possible way. But dad was a
problem of ill health so my sister would help me.

What was your dads issue?

He had a kidney transplant, a stroke, then he developed cancer, and thats what
killed him.

When did he die?

October the 19th, 2000 and...er

So quite recently?

Yeah, quite recently. Its nine years since he died.

So 2006?

Yeah. And Richard went to Andys dad then, dad died on the Thursday and Richard
went on the Thursday, on the Monday.

Whos Richard?

My boy.

Where did he go?

He went to live with Andys brother in Hemel Hempstead.

Right, well get on to that later on. Do you still see much of your family?

I do my mum. My brother quite a lot. Because I used to go up there for a weekend

but now I only go for the day because it is difficult to manage.

So you siblings were very supportive of you when you were young?

Yes they still are now but not as much because I am independent. And they, they, I
only bother them if I need them.

What was your house like when you were growing up?

My house was quite good when I grew up but I did have a bit of bad chest and
wheezes. But they didnt diagnosis it as asthma it was just a weak chest when I was
younger.

Did you go to school?

Yes. Wilfred Pickles School.

Where was that?

Stamford.

Stamford?

Yes. Then I went to St Francis at Lincoln then I went to the Dart Centre at
Cheltenham then I came here.

What age did you go the Wilfred Pickles school?

When I was four.

And did you live there?

No my mum took me there every day.

Was it a long journey?

Not far.

Did you enjoy being at Wilfred Pickles?

Yeah I liked it.

What sort of stuff did you do there?

I was in class. Then we did sports days and that.

What age did you leave there?

Eleven.

Do you have any particular memories of that place? Any particular maybe friends or
teachers or anything?

Ive got good, I had good teachers and I still see, I used to see one of them because
they lived near my mum but they dont now.

Then you went to St Francis?

Yeah, Lincoln,

Did you live there?

That was a weekly boarder Monday to Friday.

What age did you finish there?

Eighteen I think.

And what sort of stuff did you learn there?

I did English, Maths, and bearings, geography, all sorts, history.

Did you enjoy it?

Yeah.

Did you enjoy the social aspects as well?

Well there werent much after school. We used to go back to our dormitories, and no
privacy, we used to share a room, we couldnt do what we wanted to do?

Did you get on with the person you shared the room with?

Yeah there was four in the room.

You enjoyed it there?

Yeah.

Did you enjoy the learning?

Yeah, yeah.

What was your favourite subject?

English.

What about the kind of care you got there, how did you feel about that?

It was alright.

What was the food like?

Alright.

Good. So you left there at eighteen?

Yeah.

Where did you go then?

The Star centre. S-T-A-R.

The Star Centre.

Cheltenham. I loved that but I was very very home sick for a start because I used to
live there all term.

You didnt come home for weekends there?

No because it was too far I only came home at holidays.

What did you learn there?

Everything, childcare. I did my childcare exam. Cookery. Woodwork. Art. Drama.

Did you enjoy it there?

Yeah.

And what about the people you met there, did you get on with them?

Yeah.

I did eventually.

And I still keep in touch with her at Christmas and at

birthdays, my home economics teacher. She had Polio when she was at a young
age.

At that time did you have any thoughts about what you wanted to do in the future?
Did you have any ambitions or anything when you were young?

No not really. Well I would have liked to work with children but when I was here I
could do volunteering at the nursery but they dont do anything like that now.

So you went to the Star Centre at the age of 18 and what age did you leave there?

I was there for years. I wasnt, my, my education was for two years, I was lucky to
get an extended year.

So by that point you had settled in?

Yeah.

So after that what happened when you were 21 was it?

I came here.

What led to you coming to Papworth?

It was my social worker that got me in here because I didnt know because I thought
it was just the hospital. But it made me greatly more independent.

Where did you live when you first came here?

MacFarlane-Grieve.

Is that like a dormitory house?

Well it was rooms and we used to share the dining room and...

And how long did you live there?

Well when I first started till I got married.

When did you get married?

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September the 6th 1997 19987 Weve been married 19 years next year.

So 1997. Did you work when you first came here?

Yeah in Tallinn.

What was that?

It was like a workshop, packing things, but I was limited to what I could do with my
hands.

How long did you work in Tallinn for?

Until it all changed.

When they got rid of the industry?

Yeah.

Can you remember when that was?

Dont know.

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It wasnt so long ago I think. How did you feel when they got rid of the industry?
When you found out you wont have a job anymore?

A bit depressing but I was offered to go to Huntingdon but I didnt want to.

Did they have industry there?

They got a workshop there. But when I got pregnant with Richard they rook me off
the programme and I wasnt very keen on going back there. But I enjoyed doing
pottery, I did pottery, woodwork, art in Tallinn, I enjoyed that but

So it was a mixture of work and art class?

Yeah?

Going back to your CP, how do you feel the medical treatment youve received has
changed over the years?

What do you mean?

What treatments are different now to when you were younger?

I had more physio when I was younger, and they started physio here, and like
everything else it stopped.

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How has that affected you?

Because they got me walking, I do walk round the bungalow but I cant walk out out
you see but if I got more physio I would have tried to done it.

The physio is gone, is that because they cant afford it or..?

Dont know. Because it used to be at Robert Ellis but that all got knocked down.
There is physio at the hospital but its getting there and back. And at the moment I
think we have to pay for it.

Would you like to tell me how you met your husband?

I met him in Tallinn. And he used to live at Robert Ellis and I used to go and see him
and thats how it developed.

Can you remember when you met him?

Oh I dont know when I met him, we got engaged, the particular Christmas. We
decided to wait to tell all the family at Christmas. Then we got all the wedding
arranged and I walked up the aisle. I was determined to do it and I did it.

Where did you get married?

At our church here. St Peters.

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So how long have you been married now?

18 years.

Did he propose to you?

Yeah I think so I cant remember (laughs).

Well he knew what care I needed

because Mrs Martin the warden at MacFarlane Grieve let Andy in the end do what
care I needed so he werent put in the deep end. But I dont need much looking
after. The only problem is that at meal times I do need my food cut up and put my
apron on and that but apart from that Im very independent.

Where did you live after that?

Where we are now. Because Mrs Martin thought it was pointless paying a bit more
rent on my flat but luckily a bungalow came free or we dont know what we would
have done.

Tell me about what happened next in your life?

Then I unfortunately lost a child, my first child, that was a total accident, but now I fell
pregnant and got Richard.

When was he born?

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His birthday is on Friday.

This Friday.

2005. Hes ten.

The 27th?

Yeah. Hes ten on Friday.

How was it being pregnant?

Alright. But we had problems afterwards, thats why hes where he is.

What happened then? Do you what to tell me about that?

Yeah. Well we had all the care in, but we had problems, they wouldnt allow him to
live with us, but we had difficulty looking after him. We had him since he was two
then we had to go court for him in London, it was a bit traumatic for me. I didnt
know where I was.

Why did you have to go court in London?

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Because the judge was the wife of the husband, the judge was the husband who did
it, they wouldnt allow that.

So whose decision was it that Richard should go and live with Andys brother?

Social Services. Sorry, it

What was your opinion on that? Social services were saying you couldnt look after
him?

But we were determined that we could.

This was when he was two, so youd looked after him up until he was two which is a
very difficult periods?

Yeah. But we had a lot of other problems as well. They were blaming me and Andy
a lot.

Do you mind if I ask what problems they said?

That we couldnt manage him because Andy did all the work. But we had live-in
carers to help us look after him but we didnt really get a life on our own because it
was a live-in carer and she was always there. And they accused me of getting upset
and everything really got on top of me. And that, to tell you the truth, mum and my
family had to watch me because I know I wouldnt do it but I was on the verge of

16

doing something. But my dad was ill with cancer and he died on the Thursday
before and Richard went on the Monday so I had it all that week.

That must have been a very very difficult time.

Yeah but what made me so mad was my sister was going to help me out but social
services didnt like the state of her house because she was going through a divorce
at that time and they sort of blamed her about it. I dont really get on with Andys
side anyway?

Of the family?

Yeah.

So Richards been with

Andys brother all the time.

For 8 years now. How often do you see him?

Not a lot now. Cos my sister used to take us in my car quire regular buts shes
changed her job and the car and shes not got time to take us. And mum wont go by
train, and mum noted that their house isnt very good for me and Andy to get in.

Do you hear from?

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Yeah. We phone up. And he speaks to me on the phone.

Is, as far as you know or as far as you are aware, is Richard happy where he is?

Yes, very happy. Hes getting on well at school. We are on Facebook now and we
get a lot of pictures from John because his girlfriend has got cancer. Mandy got
cancer. Shes still got it but it depends how she is.

Whos Mandy?

Whos got him, Andys sister in law. But John mainly deals with Richard because of
her health you see.

Does Richard miss you and Andy?

Yes. He said to, I really miss mum and dad. And he said on the phone the other
week When will I see you? But they wont bring him to Papworth the bungalow is
not suitable.

Its too small?

No theres things everywhere and he touches things. And they, but they bring him to
my side of the family but they havent been lately because mummy tried to get them

18

down for Christmas. But Susan got them to take us to an activity centre near them to
meet up with them.

What do you do for Christmas generally, you and Andy?

We go to my side. But my mum went on Saturday and theyre letting her know but
theyre not very good in letting her know.

How old is you mum?

72. I think.

So youve been in Papworth quite a long while.

Yeah.

How has it changed since you come here?

In what way?

Whatever way really.

The work has changed a lot. And we used to have transport in Papworth. But we
havent got any now.

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Was that accessible transport?

Jims. Yeah. Jim. Docherty. Do you know him?

No.

No. Well were we had permission it was two drivers that did it between them but
theyre both retired and the transport stopped.

Did they run that themselves then?

Yeah yeah.

And who paid for that?

Dont know.

So if you want to go out

But I joined H.A.C.T. Have you seen it advertised? DISH (Disability Huntingdonshire)
have got the information if you would like to have a look. H.A.T.T. No, H.A.C.T.
Yeah. And it a company from March and it covers a lot of areas.

What is that, is that an accessible bus?

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Yeah. And its door to door.

So if you want to go into Cambridge or Huntingdon

We book it.

And is that free?

No we pay our price but we dont mind that.

How about in other terms of the village do you feel that its?

The paths are terrible.

How do you feel towards Papworth Trust?

Want my honest?

If youre happy to give your honest opinion then yes please.

Yes and no. sometimes I get on with them I dont think part of them very organised.

What was the organisation like say twenty odd years ago when you came here? How
was Papworth then when you first came? Like Papworth Trust?

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Alright but it a lot of changes now.

What sort of things have changed?

Im not sure because I dont deal we only deal with the maintenance cos that who
repairs the

Do you think theres a strong sense of community in the village? Like do people get
on with one another and stuff?

Some people. I get on mainly with a lot of people but I dont want to go into that. But
I go out, Im never at home cos I book HACTS, I go out with them a lot.

Do you have a hobbies or interests?

I used to but I like my music. I bought that on.

What do you listen to?

Pop music, country and western.

Any particular artists you like?

No. I like the sixties music.

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Sixties? Do you ever go to music clubs?

No. But I go to a country and western weekend.

Whereabouts is that?

At Hunstanton. Every year.

In terms of your condition, your cerebral palsy, how has that changed over the
years? Because obviously conditions dont generally stay the same.

As I get older without the physio I found it harder to get about but. Like getting out of
bed, I do find it difficult without help.

Do you have a care assistant to help you?

Andy.

Andy does all that?

Hes my carer.

Do you have any other outside help?

No. I need a cleaner.

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Do you have a cleaner?

Yes.

You said you had live in carers before though.

No with Richard.

With Richard? When you had Richard you had?

To help me with Richard. But that didnt all work out because our house wasnt our
own if you get, they were in and out with they would changeover, and that was what
the whole problem was: I got so frustrated and I didnt mean to let rip. Not the carer
but, one carer was fabulous with us. Till they had to change, they was on a fortnight
then they had to change to another fortnight and then we didnt get on with the
carers social services selected. Richard was under Child Protection anyway.

In your own personal opinion, do you think fir Richard it is, what do you think would
have been best for Richard, for him to stay with you or?

No I think it wouldnt, hes best where he is now, but I know I, I, I dont get upset now.
But I used to. We used to see him quite a lot cos my sister used to take us very a lot
but she then changed and shes got a different job and it takes all her time. Shes a
Child Protection manager now.

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What she of help to you when?

She was helpful. She came to court with me and Andy and she supported me and
Andy.

How do you think, over the years, that attitudes towards people with disabilities has
changed?

What do you mean?

Well has there been, do you think that people who do not have a disability, do you
think that over the years as youve got older, the attitudes has changed?

I can tell whos not born with the disability, theyve got different attitudes.

Can you explain on that a little bit?

Theres a lady down our road, shes, er, cant accept help.

Shes got an acquired disability?

Yeah, yeah.

Do you think thats because she hasnt come to terms with her disability?

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No shes not really come to terms with it.

Do you think people who were born with a disability and people who acquire a
disability, do you think there are any other differences?

People that is born with it, they seem to cope better.

Why do you think that is?

I dont know but when me and Andy we did act, with a disability you were born with it
all the while, and you got to accept it really. If you know what I mean.

How do you think that change in legislation has affected people with disabilities?

What does that mean?

Changes to benefits, changes to assistance?

Oh the benefits have really changed.

Are they changing your benefits?

I think we have some information, I think we got to change over to another benefit.
But I dont understand it.

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How does that affect you? Like how does that make you feel when you know your
benefits are changing.

Cos Im on income support now and I used to be on STA and income support I do
get a bit more money, and Andy gets carers allowance and mobility but he dont get
much carers allowance. But we manage with what we get.

Have you, would you say generally over the years have you seen you income
increase, decrease, stay the same?

For a start it decreased but with the new benefit it increased.

How do you feel your quality of life is? Do you feel you have enough money or do
you worry about money?

I do worry about it as well, I have to put money by if I need anything. Like the deli, I
used to go in there, but Ive not spare money.

If you could change something about society, to make things, to improve things form
people with disabilities, what changes would you make, what need to change do you
think?

Like what?

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Anything at all?

The paths?

The paths here in better repair?

Yes.

Anything else?

No not really.

Do you think that, do you feel a part of society as a whole?

I do not like people when they talk down to me, that really gets up my goat. It got
better, but it could improve.

Could still change, still get better?

Yeah.

What do you think the future holds for you?

I dont know.

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Do you have any hopes or ambitions or things you want to do?

I wish I could do things more than the able-bodied, if I was able-bodied I would like to
do more, but I just accept what I got and take one day as it comes. But I tell you in
the New Year I go in the hospital to have my gall bladder removed so Ive got that on
my mind.

Why are you having that removed?

Cos I had so much pain. And I still got. A week on Monday I went to the hospital to
have a, is it an MRA scan, to see, I still got pain here, but they dont want to operate
this time until they find out whats wrong that side. But I go back on the 17 th of
December to have a pre-medical and then they decide what theyre going to do.

Ok. What hospital?

Hinchinbrook. Because I had Richard at Hinchinbrook Hospital.

And they looked after you well there?

Yes. And when I was born I was premature.

Ok how premature were you?

Quite a lot. Because it was lack of oxygen didnt get to my brain in time.

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Obviously having Cerebral Palsy there are challenges around actually giving birth,
how much support did you get then? Were the midwives good?

Yes very good, they did what my mum told me. Because they told, cos, the nanny
said, she told me if I was two minutes from oxygen I wouldnt have been like that,
they ran me a long while, that did the damage.

Right, so when you came to have Richard you felt that you were properly

I had him normally.

Yeah. But you were confident in the midwives and that they, were you worried
because of the fact that youd had a difficult, when you were born there were
complications, did that, were you worried about that for Richard?

I had a third baby, did you know, and I lost it.

A third baby?

I had a first baby and I lost it.

When was that?

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In April before we got married and I didnt know I was pregnant then. It was a total
mistake butand then I wanted to try again. And then I got a real one.

Is there anything you would like us to talk about or that youd like to tell me that you
havent told me so far?

No.

Ok. Well thank you Jo and well stop the recording there.

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