Reviews of books about her and other people
Listen To Me
Communicating the Needs of People with Profound
Intellectual and Multiple Disabilities
Pat Fitton, Foreword by Harry Marsh
1994 256pp ISBN 1 85302 244 6 pb £12.95
Home at Last
How Two Young Women with Profound Intellectual and
Multiple Disabilities Achieved Their Own Home
Pat Fitton, Carol O'Brien and Jean Willson
Foreword by James Hogg
1995 200pp ISBN 1 85302 254 3 pb £14.95
From Hamhp Newsletter 14.7.1994
HOW KATHY TAUGHT US TO HEAR WITH OUR EYES
Kathy Sirockin could not speak or write. This meant that other people
could not speak to her with words. Instead, she spoke to us with her eyes,
with the expression on her face, and the movement of her body. With the
help of her parents, Pat and Barry Fitton, she taught us to hear her and to
speak to her. We learnt to speak to her in different ways. Everyone learnt
to communicate through the eyes. Some people spoke to her through music,
others of us were restricted to peeling her grapes. All of us learnt
something about life that we could not put into words, and which, perhaps,
no one else could have taught us.
People like Kathy are the reason
exists. Not because everyone with a learning difficulty is like Kathy, but
everyone with a learning difficulty is an individual who needs "special"
means to relate to the world and to contribute the richness that they,
individually, have to give.
Rani Ogundipe spoke, at a Hamhp meeting, about the intense love and
care that parents (usually) have for children, and how this tends to give
parents a special insight into the human value of a child with a
disability. Professionals often feel threatened by this. They construct
myths to protect themselves against parents, and bring down barriers in
communicating with them. This was recognized, in the
early 1970s, as one
of the main reasons for the terrible things that took place in
mental subnormality hospitals. Since then,
good practice in learning
has been generally recognised as involving parents and professionals
working together with people with learning difficulties to secure the best
ways to enable us all to have a good life.
But, how are parents (or other carers) to share with professionals, or
one another, the skills that they acquire in listening to and understanding
a person with a learning difficulty? To do this, with respect to Kathy, Pat
and Barrie Fitton invented the "Care Book". Here is Pat's description of
I found I had to tell many different people about Kathy in all kinds of
situations. She might have a new teacher, go for respite care, be admitted
to hospital in an emergency... I often wondered where to start, and how on
earth to explain it all before they fell asleep. I began to make up a
scrapbook with information about Kathy, what she was like when she was
younger, what she looked like when she was well, what was distinctive about
her personality, how she tried to communicate, what she enjoyed doing, as
well as details about her daily care needs and medical requirements. I
included photographs so that people would see her in a variety of moods,
situations and states of health.
This book proved to be a very effective way of communicating to
professionals the information that they needed to understand Kathy, and
realise what was needed if she was to be the wonderful person that Pat and
Kathy died, aged 27, in
August 1991. The Care Book remained as a
reminder of all that Pat and Barrie had lost. But it is also a reminder of
all that they and Kathy had gained in 27 years of struggle. Pat realised
that Kathy's care book could help other parents to communicate their
children's needs to professionals and others, and she turned it into a book
to do just that.
Listen to Me. Communicating the needs of people with profound and
multiple disabilities, by Pat Fitton, is written for parents, carers
and professionals who have responsibilities for people with profound
intellectual and multiple disabilities, the book focuses on two issues:
1) How to cope with the complex problems of someone with severe
disabilities, interpret their needs successfully, and maintain effective
contact with all the professionals and organisations who deal with them.
2) How to enrich that person's experience and ensure that others value
or her as a distinct individual with a right to a meaningful life.
The book is very practical. It has chapters on dealing with hospitals,
medication, school, benefits, respite and residential services, writing and
telephoning people, and much more. Kathy's experiences are used throughout
to show the reality of the issues. Those who did not know her can meet her
through this book, and at the same time acquire a wealth of practical
information. Every chapter includes references for further information and
reading. And it explains how to prepare a Care Book.
Listen to Me is published by
Jessica Kingsley Publishers
Article from the
Annual Report May 1995:
HOME AT LAST
How two young women with profound intellectual and multiple
disabilities achieved their own home.
This book is written by Pat Fitton, the mother of Katherine Sirockin,
Jean Willson, the mother of Victoria Willson, and Carol O'Brien. Pat and
Kathy were founder members of Hamhp.
Kathy died in August 1991. We miss her deeply but find some comfort in
she has left. Kathy was the stimulus for an independent living project for
people with profound and multiple disabilities, that actually worked. How
to make such schemes work, what they cost and how to set them up will be
the issue at Hamhp's June meeting, when Pat Fitton and Jean Willson will be
the guest speakers. Pat will have copies of her book for sale, and Hamhp
has copies to lend to people.
Pat and her co-authors believe that people with disabilities, however
severe, have the right to as independent and as meaningful a lifestyle as
possible. Their book describes how they enabled Kathy and Victoria to
achieve a home of their own, supported by twenty-four hour care. It starts
by introducing the reader to Kathy and Victoria. It then outlines the
struggles that preceded the idea of an independent home, before outlining
the birth of that idea and the practical steps to make it work.
Like Pat's previous book, Listen to Me, this is a lively, human book,
written around real life people, that offers more in terms of practical
advice than half a dozen textbooks. There are chapters on paying for the
home, support at home and community involvement. Valuable appendixes
include the care package, operational policy, welfare benefits, the
household budget, care books, and a plan of the bungalow.
Pat has written the following article for Hamhp, outlining how the plan
an independent living scheme arose out of Hackney's failure to maintain the
initial success of Lauriston Road.
Kathy's achievements at Lauriston Road.
Kathy Sirockin was one of the first residents at Lauriston Road hostel,
starting there in January 1983. She had cerebral palsy with severe learning
disabilities, rheumatoid arthritis, severe and complex epilepsy, vitiligo
(areas of skin where the pigment is absent, others where it has
intensified) and a bowel disorder which caused her frequent pain and
discomfort. Her new key worker was committed to offering her opportunities
to develop and enjoy life, and was willing to get to grips with all the
important details of Kathy's care which were necessary to keep her
comfortable and well. Other staff were enthusiastic and inventive. Kathy
and the other residents had their needs attended to efficiently, but also
went to clubs, evening classes, pubs and restaurants, day trips and
holidays. There was a family feeling about the place - warm socialising,
music, sharing leisure activities such as board games.
In 1984 Kathy became very ill and after many months in hospital it was
that she would need a naso-gastric tube permanently, to give her medication
and ensure she had adequate fluids when she could not drink. Staff at
Lauriston Road felt that they could not cope with the extra care
implications. Kathy's place was paid for by Islington, where we lived
previously, and her social worker persuaded Islington to fund support
workers to help with these extra tasks. Kathy was now able to come out of
hospital and return to Lauriston Road. She continued to become more
socially aware and to develop her skills with varied experiences.
But then. By 1985 it was clear that delays in replacing vacant staff
at Lauriston were more than accidental. In the following years, things went
from bad to worse, despite Hamhp's representations, many letters from
parents and meetings with officers and councillors. By early 1991 we were
fearful for Kathy's safety and well-being at Lauriston Road. We were
frequently taking her home as late as 11.00 pm because there was no firm
arrangement for a member of staff who knew her to be sleeping in. Islington
arranged for Kathy to be given a temporary place in their respite care unit
for two months.
Kathy and Victoria Willson make a home together.
During 1990 we had discussed with Islington the possibilities for
alternative residential arrangements. We had close friends who had a
daughter, Victoria, who had very similar levels of disability. Her parents
were also looking for a different style of living for her. We approached
Simon Palmour, Islington's officer with responsibility for disabilities,
about the possibility of an independent living project with 24-hour care
provided in the home of the two young women. Our respective social workers
and an officer from a care attendant scheme joined us in regular meetings
to look at the possibilities. Islington said they would consider the
project provided it cost no more than the current residential places for
the two women. We did the sums and applied to the Independent Living Fund
for a grant for each of the women to make up the amount needed to provide a
proper level of care.
We now had to sort out the following details:-
Cost the number of care attendants allowed by the finance available,
plan the pattern of working.
Identify a suitable property. Kathy and Victoria obtained both
and housing association nominations. We looked at housing association and
council properties and eventually found a council bungalow, newly purpose
built to be fully accessible for wheelchairs. It needed the final touches
and we had to work with the architect and the Occupational Therapist to
sort out how best to arrange the kitchen, bathroom and utility room. The
bungalow was at the foot of a block of flats on the Priory Green Estate,
Caledonian Road, with a small garden in front. They each had their own
bedroom and there was a third bedroom for the sleep-in worker.
Make arrangements for Kathy and Victoria to take over the tenancy.
Apply for benefits which would be considerably increased because
were in independent accommodation. Of course they would then be responsible
for all their bills - food, electricity, gas, water, telephone, clothing,
transport, holidays, internal repairs and decoration etc.
Draw up an agreed operational policy for the bungalow.
Open accounts for Victoria and Kathy to receive their Independent
Fund payments and benefits, and to pay their bills.
Arrange for connection of gas, electricity and water, and
a telephone, and establish accounts for all of these.
Take part in training with the new staff.
Draw up care guidelines for each of the women, and a household book
domestic routines, instructions for appliances, etc.
Apply for social fund grants and raise money to furnish and equip
You will realise that this was very hard work, and things rarely went
smoothly. The building societies and the gas and electricity boards were
particularly hard work. There were many other practical details to sort
out, and many times when the project seemed about to fail.
However, we were all determined to make it happen, and Kathy and
moved in to their own home in April 1991. Sadly by now Kathy was
increasingly fragile and unwell, and she died in August of that year. Her
place has been taken by another young woman with similar disabilities.
There have been difficulties. This venture is probably the first of its
kind involving people with such a profound level of disability. However it
has given the women a life style which is geared to their needs and wishes,
instead of them having to fit into the framework of an institution.
It has opened up opportunities for them. Victoria goes to concerts at
Barbican and other venues, visits the London museums and art galleries,
goes swimming, attends clubs. The two women and their carers are regular
visitors to local pubs and restaurants. Victoria has been away to a country
cottage for holidays with her carers.
Both women are more relaxed, have less challenging behaviour and are
alert and sociable. Both have developed considerably, especially in
awareness and social and communication skills, because of the one to one
relationship with support workers during waking hours.