I N C O N V E R S A T I O N

Eve Rank-Petruzziello

Andrew Holman Editor, Community Living, Walcare, The Street, Herrigswell, Bury St Edmunds,

IP28 6ST, UK

Given her busy work schedule, a request to interview Eve

Rank-Petruzziello is sometimes easier said than organized.

Eve, amongst other roles, is the only commissioner with a

learning disability on the Disability Rights Commission. As

my print deadline loomed dangerously close, I eventually

caught up with her in Melbourne, Australia at the 13th World

Congress of Inclusion International. The National Forum had

asked me to support their main congress address on their

work in England but being in the same building, in the same

city still did not make it easy. Eve had a busy agenda of ‘self-

advocate networking’, which meant we had little time to

spend together. Eve had travelled over independently and

was spending a little extra time after the congress down

under as some well-earned holiday.

At the conference, I quickly realized that Eve was one of

the most widely recognized names and faces in the national

self-advocacy movement and in her much-travelled career,

she had also met and made close friends with people from all

over the world. Colleagues from Alaska joyfully met up with

her after 4 years. They first met Eve at the International Peo-

ple First conference in Anchorage. Friends joined together

from as close as Liverpool to as far away as New Zealand for

a celebration of their work and the continued success and

development of the international self-advocacy movement.

Despite having known Eve for a number of years, I realized

I knew little of her early life and experiences and wanted to

use the opportunity of a formal interview to find out a little

more about earlier influences. Eve, at 36, had not always been

the secure, confident individual I now encountered. She tells

of her early entry to special school, a 26-mile taxi ride away

from home, as ‘I couldn’t walk’. Those days were character-

ized by concerns from ‘mum and teachers’ with ‘lots of tests

as I could not cope with the work’. She poignantly remem-

bers the pain of not being able to read the Enid Blyton books

that other children of her age could; ‘just the Ladybird ones’.

Entry to a special unit attached to the local mainstream

school at 11 was not always happy despite the new chance of

being taught some of the same subjects as other children,

such as geography. Her dad wanted her to be pushed on in

the same way as her siblings. Indeed, he felt she needed more

work than others and repeatedly requested that she be given

homework like everyone else. Her dad tried to fill the gaps

but this proved to be a disaster with tempers frayed from the

increasingly pressurized situation when Eve was not able to

come up to the standards expected of her.

The pressures continued at school especially on the jour-

nies to and from school when she was called names and spat

upon by other children from the main school. The bullying

continued in the sheltered workshop when she was older.

At 18, Eve ran away from home with only 90p and her

father’s rail card in her pocket. The Social Services Depart-

ment in the city she travelled to responded to her plight by

placing her in a home for ‘battered wives and pregnant

women’. She says that ‘a woman in the home looked after

me and suggested I get in touch with mum and dad. When I

had run away dad had reported me missing as a handi-

capped person’. ‘I hadn’t wanted to as I didn’t want to go

back, I did ring the sheltered workshop to ask them to send

me my last pay cheque, of course they needed my address, I

didn’t think about them telling anyone where I was. The

police were waiting for me when I got back from the shops.

That really scared me and I ended up running around a huge

table to try to get away from them, I was sure they were there

to take me back. I can laugh about this now but at the time I

was shit scared. After all, I am only little and they were huge.

When I had calmed down, the police just made sure I was all

right and told dad I was OK without telling him where I was.’

The local authority found her a flat. Unfortunately, this does

not seem to have been accompanied by an accurate assess-

ment of her support needs. Eve, unable to cook, clean or look

after herself, was just left ‘I was just dumped. They didn’t

know my mum used to do it all. They didn’t call it a learning

difficulty then, just that I was backward’. Left alone Eve says

that it was not long before she ‘met an older man in the RAF.

Alan could do the things I couldn’t; he could cook and handle

money, perhaps he was a bit of a father figure. Anyway I

married him when I was 19 . . . I was still seeing the doctors

and having those tests to see if I needed more help and

support’. Eve decided she ‘wanted to go out to work, but the

services put blocks and barriers in my way. I did get on a

mainstream administration course and worked in a social

services office helping out. I made the mistake of shredding

an important fax one day and Kim, the social worker there,

sent me down to the local self-advocacy group to get me out

of the way!’ Change was on its way, ‘I soon started doing

work for Speaking Up, I liked it and became heavily involved

140 # 2002 BILD Publications, British Journal of Learning Disabilities, 30, 140–141

. . . I had split up with Alan by this time, he had wanted me to

be dependent on him. I had stopped doing what others told

me’. Eve’s work at Speaking Up included a spell as chair,

editing the newsletter and as the project manager for the

Making Waves project. This also involved helping set up the

first ‘users’ Parliament giving a voice to people with learning

difficulties in the county.

Eve is currently working part-time for Values Into Action

on the self-advocacy funding project. Again, her work builds

on her practical strengths of travelling around and visiting

groups to help them apply for funding.

Eve was a central part of the group who helped inform the

White Paper, ‘Valuing People’. She ran several consultation

workshops listening to what people with learning difficulties

wanted to see in the strategy as well as contributing to the

many work groups that offered their thoughts and resulted

in the DoH published report ‘Nothing About Us Without Us’.

Eve says ‘it was good to see the inclusion of people with

learning difficulties all the way through from the beginning

to where it is now when things are actually happening’. But,

she is aware that previous strategies have not always been

fully implemented and is committed to making sure that

‘Valuing People does not stay on the shelf for the next

30 years’. She feels that her involvement with the National

Forum and the Taskforce is a way of ensuring this. She says

‘we have started to see some really good things come out of

the Forum such as the hugely increased amount of easier to

understand information now being produced by Govern-

ment’. Eve feels the National Forum’s success in sorting out a

shortfall in the self-advocacy money was ‘great’, although

‘we still need to keep banging on for more’. She feels ‘the

Forum is now working really well’ and looks forward to the

day when it becomes an independent group.

Although the White Paper is a major change towards the

goal of people with learning difficulties getting the support

they want, as well as need, Eve feels that ‘some professionals

are still trying to get their heads around that’. When this

happens, she firmly believes that ‘it is up to the National

Forum to kick arse!’ Eve was elected by the Forum as one of

their five representatives on the learning disability Taskforce.

She felt ‘this was really brilliant and that having five mem-

bers and a separate National Forum slot on the Taskforce

gave people with learning difficulties a stronger voice’.

Eve says ‘I know how people feel and I can take those

issues forward onto the Taskforce’. ‘I won’t just sit there and

watch the professionals in suits say things that I know people

with learning difficulties don’t agree with. I do say when I

think some things are dodgy’.

Applying to go on the board of the Disability Rights

Commission, she thought ‘was a bit of a long shot, I was

really surprised when I was short listed let alone when I

found out that I had got the job’. She has found the work on

the DRC enjoyable, but also demanding, especially at times

from other people with learning difficulties ‘who think I

should be there to answer their calls and demands 24/7’.

She does now have support to help sort such issues out.

As her term of office at the DRC comes to an end soon, Eve

has decided to reapply for a second term. She feels that

people with learning difficulties need time to come to grips

with such a job and it would be a pity to let that experience go

to waste; but, as ever, she is pragmatic saying she will just

have to ‘wait and see’. Whatever happens, Eve will surely

continue to promote the rights of people with learning

difficulties in the public arena for some considerable time

to come.

Eve Rank-Petruzziello with Karen Spencer, Mencap’s newly elected

European representative to Inclusion International

Eve Rank-Petruzziello 141

# 2002 BILD Publications, British Journal of Learning Disabilities, 30, 140–141