Self-determined Living for Disabled Women Using Personal Assistance
By Anne Pridmore

International Leadership Forum for Women with Disabilities
June 15-20, 1997
Bethesda, MD, U.S.A.


Self-determined living is a wonderful title to describe what we in
Great Britain  call Independent Living. Why is it such a wonderful
title? The answer is because  it cannot be misinterpreted by those
people who hold the purse strings for us to  live in a
self-determined way.

For example some local authorities would argue they had met the
needs of a  person seeking funding by supplying them with a gadget
which takes them three  hours to put their socks on, thus
eliminating the need for Personal Assistance.  Speaking personally
I can think of a lot better things to do in three hours than  put
my socks on. This illustrates to me the lack of understanding
around the  definition of independent living. Self-determined
living immediately sets the  scene, it puts back the control in the
hands of the disabled person. Self-determined living is about a way
of providing disabled people with a quality of  life which is
comparable with non-disabled people.

I wish to make it clear that this speech is based on my own
experiences as a  woman employing Personal Assistants in Great
Britain. However, I am quite sure  that a lot of what I have to say
will be instantly recognisable to you today.  When I refer to women
I will of course be talking about disabled women.

To set the scene:
I will start by giving an overview of how and why I started using
Personal  Assistants and then go on to describe the positive and
negative aspects of self-determined living for women using Personal
Assistants.

I need to go back to 1984 when having been married for 20 years I
found myself  on my own. Up to this time I had never been in a
house on my own at night. More  importantly I had never needed to
use services provided by the local authority.  I had three months
warning so thought in my naiveté that this would be ample  time for
social services to set up some sort of support system. How wrong I
was.  Three days before this was to happen I received a telephone
call from the local  office saying they would visit me that
afternoon but they did not know what they  were going to do with
me. When the local home care organiser arrived she asked  me if I
knew anyone who would "look after" me. It was eventually decided
that  she would approach an acquaintance of mine who lived nearby.
This women was  employed to come in the morning and get me up and
help me to bed at night,  everything else apart from cleaning, I
employed my own cleaner at this time, I  was expected to do. This
lasted for 18 months when having been paid the princely  sum of £12
the girl eventually left. I was then introduced to the home care 
service and the district nurses. I was allocated a home carer for
one hour per  day and a district nurse to help me to bed. The home
carer had a fixed time of  nine o'clock and had set duties she was
allowed to perform. The first morning  she arrived I was surprised
to learn that she was unable to pass me the bread  out of the
cupboard because after all she had been instructed just to get me
up  and dressed. The district nurses could come round any time
between 8.00 p.m. and  12.00 midnight. Now if they should come
round at 8.00 p.m. I very soon learned  that I was unable to last
until the morning to go to the toilet. I quickly had  to learn how
to haul myself in and out of bed. When I had to go into hospital 
for a hysterectomy no extra help was provided and not only was I
unable to get  on the bed to rest, the strain was tremendous.
Before I dispensed with the  statutory services it became
increasingly more difficult to get in and out of  bed and there
were many occasions when I spent nights in the chair because I 
could not get back. 

Looking back on those days I have realised this was the start of my
political  awareness and the inadequacy of service provision for
disabled people. It was  also the start of my becoming a rebel. I
wanted to change the system. In fact I  wanted to change the world.
I was angry. When I shouted for what I saw as my  rights I was
labelled as the infamous Anne Pridmore. Why are men seen as 
assertive and women seen as aggressive? I remember asking the home
care  organiser if she had been on management training about
disability equality and  the right of disabled people to be sexual.
I told her that I wanted to be able  to cancel home care if I
wanted my partner to stay over. I was told that all  home care was
programmed some ten days before and this would be quite 
impossible. After a lot of argument I was "allowed" to cancel as
long as it was  before 10.30 p.m. and not after 7.30 a.m. Doesn't
allow for a lot of  spontaneity, does it?

I was allocated a bath nurse once a week on a Monday. In Great
Britain all our  Bank Holidays fall on a Monday so when this
happened I had to go without a  shower for two weeks. In some ways
I could understand - at that time - the  limitations on finances
but what I could not understand was the bath nurse's  attitude who
quite clearly could not appreciate why it was perfectly acceptable 
for her to shower or bathe whenever she wanted but I must accept
what was  offered.

In Great Britain when you have nurses into your home you
automatically have to  have notes written on you. They would go
something like this. "Helped Mrs  Pridmore have a shower and dress.
Helped Mrs Pridmore undress ready for bed."  Then every three
months a senior nurse would appear and write "Mrs Pridmore  seems
to be coping quite well, she was making a curry when I visited."
No-one  ever asked me how I felt I was coping, the fact that I
found it extremely  difficult to manage in a kitchen which was
designed for a non-disabled person  was never addressed. However,
I hated being treated as a sick person. In those  days I did not
even recognise it as the medical model.

Around 1991 I managed to secure a small amount of funding from the
Independent  Living Fund which is a source of funding from Central
Government. This was my  introduction to self-determined living. I
started with 26 hours which I used in  the first place to gain more
flexibility over my life. At this time I had a  major difference of
opinion with the nurses' input. I found to my total  disbelief that
notes were being made about my personal relationship with my 
partner. I ordered that the notes be removed from my house. I am
quite convinced  they were still kept at the hospital but somehow
it made me feel better not  seeing them. It was also around this
time that I had a confrontation with a  nurse who came to help me
get undressed at night. I was entertaining two friends  when a
nurse appeared in plastic apron and rubber gloves to undress me. I
felt  extremely degraded and humiliated. When I asked her why she
told me that it was  the new rules and was to avoid cross
infection. I told her in no uncertain terms  that I never knew
Cerebral Palsy was infectious. Something had to be done. This  was
not self-determined living but yet another form of
institutionalisation  within your own home.

Through my own organisation, which is an empowerment and advocacy
centre run and  managed by disabled people, I had been invited to
sit on the Community Care  Planning Group for Social Services. As
a result of this I was asked to attend a  seminar at the King's
Fund in London. There I met other people who had swooped  services
for cash and I decided that this was what I was going to do.

In 1991 I wrote to the Director of Social Services and suggested to
him that the  support services that he was providing allowed me no
flexibility and no quality  of life. He was not best pleased. I
approached my organisation for an advocate  and between us, along
with a very enlightened social worker, we got the local  authority
to allow a pilot scheme to be developed. It took two years to come
to  fruition. Every time we thought we had convinced the powers
that be they would  alter the rules and change the goal posts. We
thought that providing evidence of  all the meetings I went to
would result in adequate provision of funding for  Personal
Assistance within the assessment procedure. How wrong we were. All 
hours spent out of my home were disallowed. The fact that you need
to use the  toilet whether you are at home or out never seemed to
enter the equation. We had  hours of discussion around
accountability of funding. We fought over whether  every task
performed by Personal Assistants should me detailed on the signing 
sheet. There was one point when I thought the whole thing would
come to nothing  because they would not allow me to receive moneys
directly (even though some  authorities were already doing this
albeit illegally). It was eventually agreed  that my organisation
could act as the third party.

At this time there are some 27 people on the scheme. Last year the
money was  frozen. No-one knows what happened to the money unspent.
This year a further £  260,000 have been allocated to the scheme as
from April 1st, yet still there are  people who meet the criteria
being turned down. In fact, social workers are not  informed about
the schemes' existence. It does beg the question what will happen 
to this money. Is it being saved to pay off debts in other
departments? 

Now I want to talk about the way my scheme works.

I recruit my Personal Assistants by advertising in my local weekly
paper, in the  free papers and by advertising in shop windows. I
usually have an initial chat  on the telephone when it is often
apparent whether people have any idea what  self-determined living
is all about. I then arrange interviews in my own home  but if you
wish, the scheme does allow for interviews to be held at an office
of  our organisation. I have a job description which I invite them
to look at and  ask if they have any questions. There is a job
application sheet. I also ask  them for two references which I take
up if I feel they are suitable for the job.  I have a six month
trial period for either party and a twelve month service 
agreement. Since I started using Personal Assistants I have learnt
an awful lot.  Some of the things I have learnt are:


People can be anything they want to be at an interview.
Even after six months trial period it does not mean there will not
be  difficulties.
Who needs who most - more about that later.
Who controls who.

?.   Privacy is always going to be a problem.
?.   Being an employer is harder than you think.

Self-determined living for disabled women using Personal Assistants
is  fundamental to equality of opportunity. They are basic human
rights yet to be  accorded to the majority of women in Europe. This
leads to social isolation,  enforced dependency upon informal
support systems provided by family, friends  and loved ones. This
sort of lifestyle leads to fear of eventual incarceration  in
residential institutions when informal support structures break
down. 

Now I want to look at the really positive aspects of
self-determined living. 

Apart from the more obvious reasons why self-determined living
through the use  of Personal Assistants is a positive thing there
are particular areas which are  specific to women.

Having access to Personal Assistance for women can enable them to
go to work  sometimes for the first time in their lives.

For women having access to a Personal Assistant can alter the
traditional role  of women. For example a women can now enter male
dominated venues such as pubs  accompanied by her Personal
Assistant. This alters the typical stereotype of  women in society.

Young women living at home have often no arena or opportunity for
exploration of  their sexuality. Self-determined living can offer
a way of life which is more on  a par with their non-disabled
peers.

Women may be forced to stay in relationships because of their
reliance on their  partner for their Personal Assistance. Many
examples of violence and abuse have  been recorded in these
circumstances. Self-determined living can offer women the  chance
to regain control and choice over their lives.

Personal Assistance can alleviate the stress within a relationship
when too much  is placed on the support of their partner. It can
also provide assurance that  any children will not be taken into
care when it is assumed that women are  unable in some situations
to be all things to all people. For example it is  acceptable for
non-disabled women to make use of child care or nursery  facilities
or employ a cleaner. Nobody can do everything for themselves, so
why  are we expected to?

Now I want to look at some of the negative aspects of
self-determined living for  women through Personal Assistance.

I found it difficult to know whether to begin or end with this.
After much  thought I felt that as a group of women coming together
in solidarity and  remembering that it is usually the last topics
of any speech one remembers I  felt last was best. I would like to
think as well that some of these areas may  be things we can work
on in our workshops or for any future seminars.

Discrimination during the assessment process for women is a real
concern to me.  Women being seen traditionally as carers, therefore
the perceived need for men  for Personal Assistance is instantly
recognised.

Women living with other women may lead to assessment being around
"Well she can  look after you, or you can share the chores." If you
are living with a disabled  man then you have obviously been
supporting him - unless there is evidence to  the contrary. If he
is non-disabled he can support you. Either way as a women  you do
not need Personal Assistance.

When men are left with children and refuse to give up work and/or
refuse to let  children go into care all the appropriate services
are brought in. This would  not happen for women and my experience
has shown me that even when relationships  are in danger of
breaking down it is extremely difficult for women to get  Personal
Assistance. It is these kinds of traditional oppressions which
affect  disabled women in a very subtle way.

There seems a much easier transmission from self care to supported
care for men.

Vulnerability for women when advertising. Caution over access to
phone number  etc.

A man who forms a relationship can quickly dispense with his
Personal Assistant  for personal care, (women being the traditional
carers in society) not so easy  for women in a relationship.

People who become disabled: men may have experience of employment
issues but  women in a traditional role of wife and/or mother may
never have been employed  therefore it will be harder for them to
become employers.

[It is] much more of a power struggle for women than disabled men
with their  female Personal Assistants. Example of which is two
women in the kitchen. How  many of you have wanted to direct the
cooking but felt an intruder in your own  kitchen?

When a women's partner either becomes disabled or his impairment
increases and  he gets Personal Assistance funding you can feel
redundant - their partner's  Personal Assistant can undermine her
authority, their assistance and even their  sexuality. Tendency for
men to hire younger prettier Personal Assistants  regardless of
suitability to the job.

Friendships between women are often different than those between
men. Men tend  to talk about more abstract things whilst women talk
about feelings. This can  affect the relationship between a women
and her Personal Assistant. It is  important to be aware of this
because it can easily shift the balance of power  between employer
and employee.

Something I touched on earlier was about control.

Who controls who in a Personal Assistant and her employer
relationship?

Whilst we have barriers put up against us which come from outside
we also erect  our own barriers to self-determined living. These
come from our own inability to  manage our lives, emotions, our
good nature and through not being assertive  enough to say what we
want.

In the non-disabled world friendships and support systems work on
a kind of  debit and credit basis but I would question whether we
have this kind of  bargaining power.

Still on the subject of control and who controls who. Is it a good
idea to  involve Personal Assistants in disability issues? I used
to think that it was a  good thing to have a Personal Assistant who
took on the movement, until that  person used it against me. This
was an example of "Who needs who the most?" The  role of a Personal
Assistant is a tricky one for the Personal Assistant and also  for
the Personal Assistant employer. Getting it right is fundamental to
self-determined living.

In conclusion I would like to say - whilst there may be many things
we need to  learn as women about the way Personal Assistants can
enable us to lead more  equal lives there can be no doubt that
self-determined living has already  changed the lives for many of
us. Surely the way to promote standards for self-determined living
throughout Europe is through conferences such as this and  seminars
at local, national and international level. We must make sure that
our  respective governments give priority to allocating adequate
resources to fund  self-determined living for women through the use
of Personal Assistants. ??

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