The Roots of the Social Model: A Life History of Paul Hunt
Koichiro TANAKA
Hokusei Gakuen University, Japan
Translated by Yuki Kosuge
1.
Introduction
Late 1960s and 1970s saw radical organisations for disabled people
being set up in many countries with the backdrop of the worldwide
flourishing of social movements. These organisations went on to
develop in diverse ways defined by the respective country‟s political
and cultural contexts but there was an element which all of these
movements shared, which was the intention to see the so called
“disability problem” as a social and political issue, and the application
of that philosophy.
The British disability movement, which became active during this
period, quickly conceptualized the “disability problem” as disability,
and through the refinement process of its theory and attempts to put it
into practice, has since had a huge impact on the philosophy
1
formation of the disability movements worldwide. In particular, the
work of Union of the Physically Impaired Against Segregation
(UPIAS), which is recognised as the starting point of the radical
disability movement in contemporary Britain, deserves special
attention. The social model of “disability” which UPIAS proposed
justified the perception of the “disability problem” as a political issue,
and provoked many new discussions in the field of “disability”
beginning with subsequent disability movements and disability
studies, and enriched the discourse on “disability”.
Much research has been carried out on the social model that UPIAS
proposed with regard to its sophistication/usefulness/precision as a
cognitive model relating to reality analysis of “disability”, and to the
possibility of wide application relating to providing solution for the
problem of disability, not just in Britain but also in the field of
Japanese disability studies and welfare for disabled people (e.g.
Brechin et al., 1981, Campbell & Oliver et al., 1996, Barnes et al.,
1997, Shakespeare et al., 1997, Thomas, 1999, Shakespeare, 2000,
Shakespeare, 2001, Barnes et al., 2003, Shakespeare, 2006, Thomas
2007, Nakano, 2002, Hoshika, 2007, Sugino, 2007, Tanaka, 2007).
However, UPIAS itself, which is recognised to have been the source
2
of the social model, has only received nominal mention in the
context of social model research and disability movement history (for
example in Japan, in Ogawa, 1998, Ishikawa & Nagase, 1999,
Sugino, 2007, Tanaka, 2005a) and a detailed research into the
process of its formation through to its dissolution, has never been
carried out in Britain, let alone in Japan. The context of the birth the
social model, together with the history of UPIAS, is in an unexcavated
state. The main reason for this is the fact that it has been extremely
difficult to collect primary materials recording the details of the internal
discussions at UPIAS. UPIAS only publicly published four materials,
namely, Union of the Physically Impaired Against Segregation: Policy
Statement (1974) which set out organisational goal and policies,
Fundamental Principles of Disability (1975) which clarified the concept
of the social model, Disability Challenge 1 and 2 (1981, 1983), which
was an open newsletter. These materials allow us to see the
crystalized version of UPIAS‟ philosophy but not the conflicts,
embroilment and contradictions, and the discussions leading to its
sublation during its formation processes. On top of these limitations
relating to available materials, interviews with ex-UPIAS members
have not been carried out, and this meant that the data, which would
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help us study what sort of internal discussions within UPIAS took
place, which formed the social model, was definitively lacking. I
myself have written on the discussions at UPIAS in the context of
philosophy comparison between Japanese and British disability
movement history (Tanaka, 2000, 2001, 2003, 2005a and 2005b) but
due to these limitations, have not been able to trace the detailed
history of UPIAS‟ formation through to its dissolution.
In 2011, I was given the opportunity to research at the School of
Sociology and Social Policy and Centre for Disability Studies, The
University of Leeds, and it was during this time that I had the chance
to collect more than a hundred copies of UPIAS Circular *1, an
internal circular within UPIAS, and other related materials, and to
interview some ex-members of UPIAS. I believe that through these
materials and research data, I can trace the details of the internal
discussions within UPIAS and the process of its formation through to
its dissolution, which have until now been unclear.
What sort of disability experiences did the respective members of
UPIAS develop their philosophy in, why did UPIAS need to come into
existence in the first place, how were its aim and policies formed and
honed, what were the political circumstances surrounding disability
4
like in 1970s, what sort of discussions did UPIAS have with other
radial organisations and charity groups, what processes led its
dissolution, how did each of the members confront disability after the
dissolution, and how do they regard the current politics surrounding
disability in and outside of the UK.
While seeking to answer these questions, I think that by tracing in
detail of the roots of the social model, and by unearthing the sort of
disability experience of the disabled people it was born out of, and the
discursive context it was conceptualized and refined in, I can offer
new evidence for social model studies in the future, and will also
contribute to position the significance of UPIAS clearly within the
context of disability movement history.
The aim of this paper, as the first step in these processes, is to
examine the life history of Paul Hunt (1937 – 1979), who initiated the
setting up of UPIAS, and until he died in 1979 always led the
organisation in its organized actions against various social injustices,
development of the disability theory with the social model at its core,
and contributed to the development of disability movement and
disability studies not only in Britain but the rest of the world, and by
doing so, to illuminate the process which led to his forming the social
5
definition of disability(some years later, Mike Oliver first used the term
Social Model when he was trying to explain it) with members of
UPIAS and internal necessity which led to the formation of UPIAS.
Specifically, by tracing his disability experiences from early days,
resistance activities, as well as research and writing activities, look
into the germination of the social model concept, which regards the
“disability problem” as a form of social oppression = disability, and the
thought process leading up to his recognition of the need for
organisations run by disable people.
The data and materials this paper is based on, are mainly drawn from
the two interviews with Judy Hunt, Paul Hunt‟s widow (7 July and 27
September 2011, at her house in Bush Hill Park, north London), and
essays, reviews, etc. which Paul Hunt wrote in Cheshire Smile, a
magazine for residents of the institution whilst a resident there (1955
– 1970), UPIAS Circular and other related documents.
2. From Birth to a Chronic Illness Hospital
Paul Hunt was born on 9 March 1937 in Felpham, Sussex in south
6
England. He was the fourth child and the only son. He had six sisters.
Paul‟s parents were Catholics and were quite wealthy during the early
years of their marriage but lost their wealth in the economic downturn
before the 2nd world war.
Judy showed me some pictures of Paul when he was little. The boy,
who is surrounded by his sisters, looks bright with his high forehead
and wide eyes.
When Paul was five, worried about his faltering steps, his parents
took him to the hospital along with his sister (Sylvia Hunt), who was
two years Paul‟s senior and was showing milder but similar
symptoms. The doctor‟s diagnosis was that both children had PMD
(progressive muscular dystrophy). Paul‟s parents were told by the
doctor that he would only live to fifteen or sixteen.
It is not known when, by whom and in what words this fact was
conveyed to Paul but Paul knew by the time he was a teenager that
he would not live long. At the time, many of the children with PMD
died before they were eighteen, and Paul himself had to witness
many of his friends of his age dying at the chronically sick hospital
where he lived from the age of fifteen.
7
I think that Paul lived his life with this sense of urgency that he “had to
do something
now”. That was the frame of mind he was always in. (Hunt, J,
7/7/2011)
However, after marrying Judy and going through genetics counseling
(they went into this counseling in order to decide whether or not they
should have children) he discovered that the doctor‟s diagnosis when
he was five, was wrong. During this genetics counseling session as
an adult, his impairment was diagnosed, not as PMD, but possibly as
SMA (Spinal Muscular Atrophy, but even this was not a definite
diagnosis and left some room for doubt), and as a result of this, Paul
and Judy learnt that the chance of their children being born with the
same impairment as Paul is extremely low, and so they decided to
have children.
At first his mother taught him to read, and after he was 6 years old, he
went to a small private school in the village - primarily for girls but with
mixed preparatory (junior) classes. According to Judy, it was definitely
not a Catholic school but possibly another religious denomination.
he started attending a girls‟ school in Sussex which was run by a
8
nunnery. This was the only school that Paul, who struggled to walk,
could go to from his home. When he was eleven, Paul moved to a
boarding school for physically impaired children in Box Hill, Surrey.
He would stay at this school until he was fourteen. At the time he
could walk independently but it was very unstable. Soon after he
turned fourteen, he broke his leg when he fell, and was sent home.
There was no wheelchair in his house or money to purchase one, so
Paul‟s father put two wheels on a wooden chair. Paul could move
around the house on this wheelchair but could not go outside. After he
sat on the handmade wheelchair that his father built, Paul would
never stand on his two feet until the day he died.
Pau‟s time at home was to be short lived. After several weeks at
home, he moved to the children‟s ward at Queen Mary‟s Hospital in
Carshalton, Surrey, and began studying in their „hospital school
classes‟. It seems that this period in the children‟s ward was a bright
spot in Paul‟s memory. There were classmates that he became
friendly with and teachers who were enthusiastic and kind. He sat his
GCE O Levels there and studied hard subjects such as French and
Philosophy.
In the letters he wrote to his family at the time, along with negative
9
topics such as reference to his not so sound health, fear of
debilitation, uncomfortable corset made of iron and leather which he
had to wear, rudeness of the physiotherapist, he also wrote about
how he enjoyed swimming, what he made in the crafts class and how
he has come to accept his own impairment.
At fifteen, he left Queen Mary‟s Hospital but could not get back home.
His family had moved to by that time, could not accommodate Paul
who was a wheelchair user in terms of internal structure, let alone
entering. His family lived in a 2 story house which had stairs up to the
3 bedrooms and bathroom. And there were some steps at the front
door. His parents gave up on the idea of having Paul back at home
(Paul would never live in the family home again – but he did visit
occasionally – more so after Paul and Judy were married, but he had
to be lifted into the house because of the steps). So Paul went to a
home for disabled children in London after leaving the hospital. He left
this place only after two weeks however (Judy doesn‟t know the
reason), and moved to the geriatric ward at St John‟s Hospital in
Battersea, London, which was for adult patients with chronically sick.
Life at the geriatric ward for Paul was abysmal. Paul would later tell
Judy after they got married that those days were “as though he was
10
prisoned”. Most of the patients were old, and although there were
some young patients like himself, they were mostly PMD patients, and
many of them died before they reached adulthood. This was a
“common fate” for young patients in geriatric wards at the time. Also,
there were naturally no school classes in the geriatric ward, and
Paul‟s public education effectively ended when he came to this
hospital.
The fifteen-bed hospital room was an “empty space” for Paul. There
was a black and white TV in the corner of the room but it was always
broken. Paul could not find any meaning to his life at this hospital, and
spent all day in his bed in the early days. Sylvia, who came to visit
him occasionally, would later tell Judy that he was feeling dejected
and depressed in those days.
Judy showed me a photo of Paul taken in the geriatric ward. In the
dimly lit black and white room, Paul casts slightly neurotic eyes
framed by a black rimmed pair of glasses to the camera sitting on his
wheelchair next to the clinically lined up beds. Looking at this picture
after listening to Judy‟s stories, he looks like he is enduring this
“empty space” with desperate determination despite half giving up on
it.
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Every Saturday, Paul‟s father would come to visit. His mother came
rarely because she had to work fulltime because of their financial
situation, and also she was looking after Sylvia who suffered from the
same impairment as Paul although milder, and her three young
sisters (two older daughters had already left home). Progression of
Sylvia‟s impairment was much slower than that of Paul, and she could
walk with crutches. She also could drive when she was an adult.
Because she could walk (and not have to use a wheelchair) she did
not have to live in an institution until she was older, and was able to
therefore grow up with good relationships with her family members.
After she became an adult, she would live in the same institution as
Paul (Le Court Cheshire Home, as described later in this paper)
Letters that Paul wrote to his family from the geriatric ward remain
too. About the content of these letters, written in writing that seems to
suggest his loss of confidence, and is small and feeble, Judy told me:
Compared to the witty letters he wrote to his family from the children‟s
hospital,
these letters were very depressing and it seemed that Paul had lost
even the will
12
to wish for something fun.. He said in a letter that he played cards
with his friends
in the ward until 04:30 on Christmas Day as he didn‟t have anything
else to do.
(Hunt, J, 7/7/2011)
He went occasionally to scout camps for disabled boys. Judy‟s
notes say he remembered these camps with some affection. But
he also recalled the intense fears of the young lads (in the
hospital) who were living out their life sentences waiting to die with
nothing to live for, and Paul was convinced their lives were cut
shorter than need be (by living under those conditions).
3. Decision to Move to Le Court
Around three years into his gloomy geriatric ward period, Paul came
across Le Court Cheshire Home (Le Court from hereon) through two
BBC programmes. One was “A week‟s good course”, a five minute
programme showcasing charity activities within the UK, which was
13
broadcast in August 1954, and the other was a special programme
broadcast in September of the same year. *2 In the latter, Le Court,
which was the first Cheshire Homes to be built, was described in
detail.
After watching these two programmes in his hospital room, Paul
wanted to live in Le Court. It was not a mere wish as far as Paul was
concerned. It is easy to imagine that for Paul, who had already
reached the age of eighteen and was very much aware that he didn‟t
have long to live, it was a resolve coloured with tragic desperation.
The doctor, to whom Paul told this, must have felt the desperation too
as he contacted Le Court immediately about Paul and the possibility
of him moving there. A reply soon arrived from Le Court that this
should be possible in November or December that year. Paul wrote to
his family immediately with this good news after being told by the
doctor. Unlike the previous letters he wrote from the geriatric ward in
the foregoing three years, the letter was packed with joy and
excitement. He writes with great anticipation that he wants to have
moved to Le Court by Christmas.
However (completely unexpectedly for Paul), his father opposed this
move to Le Court. His reason was that Le Court was in Hampshire,
14
which was far from London, and he cannot visit his son every
Saturday as he was doing if Paul moves to Le Court. Paul was hurt
and aghast that his father should stand between him and the only way
out of his nightmarish life at the geriatric ward. At the same time, he
became angry at his father‟s selfishness at not trying to understand
the harshness of the reality and fate he had to face on a daily basis.
After this, Paul would refuse to come out of bed when his father came
on Saturdays. He refused to go for walks with his father, and adopted
an aggressive manner towards him. His father was perplexed by his
son‟s behavior but continued to try to talk him out of moving to Le
Court. This incident triggered the deterioration of Paul‟s relationship
with his father, and it was never reconciled.
In the following year, June 1955, Paul despite his father‟s pleas went
to Le Court for a two week trial, and in July moved in properly. Paul
would live in Le Court for fourteen years until he marries Judy and
moves to London in 1970.
4. Leonard Cheshire and Le Court Cheshire Home
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Let us take a deliberate sidetrack at this point and touch upon the
founder of Le Court Cheshire Home, Leonard Cheshire, and the
institution's early history. “It is important to understand the early
history of Le Court in understanding why Paul and other residents
started the fight within Le Court” (Judy Hunt, 07/07/2011)
Leonard Cheshire, the founder of Le Court Cheshire Home, who was
chosen as one of the 100 Greatest Britons in the 2002 BBC poll, was
born in Chester (Cheshire, England) in 1917. He read law at
University of Oxford, a decision, which was in no small part
influenced by his father, who was a legal academic, and a barrister.
During Second World War, Cheshire served as a RAF pilot, taking
part in more than 100 missions as a young flight lieutenant, and his
103rd mission was the nuclear bombing of Nagasaki. He was the
official British observer of this mission but did not witness the
dropping of the bomb itself due to a mistake by the navigator.
However, this element of involvement in the nuclear bombing seems
to have had a significant impact on Cheshire‟s view of life. In later
years, Cheshire stated that the nuclear bombing of Japan, which had
essentially surrendered by that time, was clearly unnecessary as far
as the war objectives were concerned. He went onto conclude that
16
the aim of the bombing was not to conclude the war but to carry out
an experiment (Cheshire, Lord, 1992).
Cheshire converted to Catholicism following the end of the war. As
an ex-serviceman, he struggled to find purpose in life for a while after
the war ended but he soon came to have the idea of setting up a
community for ex-servicepersons, who not only lost their homes in
the period of disorder after the war, but their social status and roles
suddenly with the end of the war (like himself). This was to be in the
old, sturdily built Victorian house with 25 bedrooms (named Le
Court) and the 32 cottages that stood on the 300 acre of rugged hill
in Petersfield that Cheshire inherited from a relative. (Cheshire,
Leonard, 1998:17 – 18) Several ex-servicepersons started to live
together following Cheshire‟s call but this community soon
disintegrated because of disagreements between the residents.
Cheshire was contacted by a hospital nurse in Petersfield several
months after the disintegration of the above community. It was in
regards to a cancer patient and where he could be housed after he is
discharged from the hospital. She explained that this patient, who did
not have long to live, had been looking for a place to live after he
leaves the hospital but to no avail due to his terminal stage cancer,
17
and therefore she wondered if Cheshire would consider taking him in
as he had a deep empathy with charity work (Cheshire, Leonard,
1998:13). Cheshire, after a period of hesitation, met with the patient
at the hospital and assured him that he would “look after him until he
dies”, and that he would accept him. He took care of this patient at
Le Court until he died. This prompted him to think about the idea of
opening up Le Court to patients who find themselves in similar
circumstances. In 1948, with a new resolve that he would dedicate
his life to charity work, Cheshire set up Cheshire Foundation Homes
for the Sick. The foundation was renamed Leonard Cheshire
Foundation in 1976 and continues to be involved in many projects to
support disabled people around the world*3.
Having decided to open up Le Court for cancer patients, Cheshire
contacted several hospitals offering to take in patients that had
nowhere to go after they leave the hospital, and soon, many patients
started arriving at Le Court. Amongst them were some who did not
have cancer but had physical impairments and were being urged by
their hospitals to leave. They and the cancer patients gradually built
within Le Court communities for self-help. At the time, there were no
paid staff members at Le Court, only some volunteers. However,
18
some of the cancer patients and people with physical impairments,
who brought with them varied career histories, had experiences of
working as professionals, and they were able to solve most issues
themselves.
This community did not have organizational structure, and was
infused with a free atmosphere. It seems that Cheshire, who called
Le Court family home, did not have any intention of bringing in any
organisational discipline and structure into Le Court. According to
Judy, Cheshire did also refer to it as a family in which he clearly saw
himself as the parent figure and the “patients” he likened to the
children.
He never went beyond providing indirect and subtle support to
activities initiated by the residents themselves. However, having
become a home for a large number of patients and people with
physical impairments, Le Court soon had to face many serious
problems that had to do with its continuation and maintenance, such
as those to do with finance and the building‟s structure.
Cheshire‟s father, who was a rather stern legal academic, gave
Cheshire advice at the time that in order to achieve stability and
continuity, the management of the institution needs to be
19
systemized. Cheshire gradually began to recognise the need for
guidelines and rules for managing a home, and for a more official
structure. This organisational structuration took place gradually over
time.
In the early days at Le Court, the patients were keen to create their
own organisation and discipline. They formed an organisation called
the Patients Welfare Committee (PWC, renamed Residents Welfare
Committee subsequently) *4, and through its representative
conveyed to the managers, the residents opinions and wishes
regarding the running of the home, and published a house
magazine. The warden at the time was not a professional as such
but was very liberal and did not interfere with the residents‟
autonomy.
During the organisational structuring stage, issues such as
employment of qualified nurses and building of more accessible
accommodation units had risen but luckily they were able to raise a
huge amount of donation, and solve them. For the building of the
new accommodation buildings, along with professional architects,
several residents were given the opportunity to voice their opinions.
20
The accommodation building consisted of several four person rooms,
two person rooms and one person rooms spread over two floors, and
female residents lived on the first floor and male residents on the
ground floor. This building had a lift too. The fact that it had a lift was
one of the reasons Paul decided to move into Le Court. This lift could
be operated by disabled people and it seems that for Paul, who was
in effective confinement at the geriatric ward, this symbolized
freedom.
In July 1956, Paul, who had just turned nineteen, moved into a four
person room in the new accommodation building at Le Court. There
were 39 residents at the time.
5. Life at Le Court
As mentioned, Le Court, which was in Peters Fields in Hampshire,
was built on a rugged terrain. Volunteers and family members who
visited gasped at its beauty but it meant that it was difficult for the
residents to go outside either on foot or in their wheelchairs.
However, the residents would get in the car that they owned, drive
21
down the hills to go to the village pub for a drink. The liberal warden
would sometimes join too in the fun.
Except for the one who was living in Australia, his four sisters came
to visit him in Le Court on a number of occasions. His father,
because of their stressed relationship, never came to see him. Even
after their marriage, Paul rarely talked about his father to Judy. His
mother visited several times but because of financial constraints,
much of the communication between them was by letters.
Sylvia, who was two years older than Paul, joined him in Le Court
four or five years after he moved there. Judy doesn‟t remember if
she came to Le Court straight from home, or was already living on
her own having left home when she came to Le Court. In any case,
Sylvia move into Le Court in 1960 or 1961 and lived there until she
moved out in 1968 and got married. Whilst she was there, as Paul
did, she took on some roles on committee member of PWC.
The residents ran a small shop on the premise of Le Court, and sold
their creations in the workshops, toothpaste, cigarettes, shampoo,
sweets, etc. and saved up their earnings in “Patients Welfare Fund”,
which for example paid for their car.
22
Not long after Paul moved in, the liberal warden, who had been
enjoying life at Le Court with the residents, left and as his successor,
a strict ex-serviceman (he was nicknamed The Commander) arrived
at Le Court. The first thing he did was to ban the regular trip to the
pub by the residents. This ban marked the beginning of a long battle
by the Le Court residents, including Paul.
Seen from this angle, the motive for Paul and his fellow residents‟
struggle was not to restore autonomy which had been taken away
from them, but rather to protect the self governance which they were
about to be stripped of. For Paul, who endured years of depressing
time at the geriatric ward and had great expectations of life at Le
Court, this battle was inevitable.
Also, it could be said that the platform of the battle itself, Le Court,
nurtured the pioneering nature of the battle Paul and his fellow
residents fought. As we have seen, Le Court was different from the
despised “social evil” of long-term live-in institutions, tainted with
over-managed, oppressive and inhumane treatment of the residents,
that starting with the disability movement, academia and journalists
have been at pains to attack. On the contrary, it would not be wrong
to say that with the liberal atmosphere and the philosophy of respect
23
towards the residents at its base, it was a place where the residents
through uniting and acting together, could see possibility of further
acquisition of rights and freedom.
Wading her way through the mountains of papers that she had
pulled out for me “It‟s such a long time ago I‟m not sure if my
memories are necessarily correct…”, Judy handed me a copy of the
meeting notes summary of PWC (Mason, 1955 – 1964). *5
Recorded in this PWC meeting notes summary are the details of the
discussions about the operation of the aforementioned shop, various
workshops within Le Court, specific day to day rules, living
conditions, residents questioning of care methods and behaviour
employed by the staff, etc.
According to the notes dated 23 November 1956, it was decided that
no staff would be allowed to vote in the PWC committee member
election, and we can see that from then on, PWC was truly a
committee run by the autonomy of the residents. Paul was chosen as
PWC‟s treasurer in 1956, and as Chairman in 1963. Sylvia, was
chosen as treasurer in 1961, and in the 1961 election, when Paul
was elected Chairman, she was chosen as Vice Chairperson.
24
I have picked out some examples of topics that were discussed at
PWC from the notes below. There is a wide range of topics – food
and luxury items (decline in the quality of the potatoes served,
handing out of bread which was going off, strength of tea and coffee,
etc.), residents‟ leisure, going out, staying the night outside the
situation (procurement of travel cost, curfews, access to the village
cinema, wheel chair friendliness of the institution‟s vehicles,
chaperons for travels, drivers for going out, going to pubs, etc.)
accommodation facility and amenities (size of the TV lounge,
increasing the number of bungalows for married couples, noises
caused by washing machines, amenities in the guest lounge,
decoration cost for the new bridge to be built in the premises, size of
the communal area, where the piano should be placed), daily
schedules (TV time, wake up/bed time, morning coffee time, etc.)..
In March 1963 as an example, they accused a matron of treating
residents without sincerity (rudeness toward residents, negligence of
tasks, non-cooperativeness, etc.) and demanded her
resignation/dismissal to the Management Committee (MC *6) and
won. Paul, who was PWC chairman at the time, declared victory
saying “We won the dismissal of an inappropriate staff”. A nurse,
25
who had always sided with the residents and been threatened with
dismissal by the MC, succeeded the matron.
Also, Paul and other PWC members were “adults that need to know
what is being discussed in relation to our own lives” and therefore
“need to monitor the management of the institution”, and demanded
that a PWC representative be present at MC, Admissions Committee
(committee that assesses the admissions of new residents), and The
Annual Family Day (annual meeting for the whole of Cheshire
Foundation). They made the management to agree to let two
representatives from PWC to attend the monthly MC meeting in
December 1956, one representative to The Annual Family Day in
1957, and although the date is not clear, to Admissions Committee
too.
People that played central roles in battles to protect their rights such
as these, according to Judy, were “ones that stick their neck out”,
which included Paul and six or seven other young dynamic residents.
(at the time, two thirds of Le Court residents were people with
learning difficulties)
To my question “When Paul and others started to demand their
rights, how were they treated by the staff?”, Judy started the reply by
26
saying “We need to distinguish between the care staff and the
managers” and told me that Paul and other residents maintained
good relationships with care staff on the whole that worked closely
with them, and many of the volunteers that came at the weekends
sided with the residents, and had a great amount of respect for Paul
and other residents.
Most of the institution staff was care staff that sympathised with the
residents, and some of them were nurses that had specialised
education and training. Other than them, there was a General
practitioner doctor who visited when needed.Otherwise doctors and
lawyers did not visit as part time staff. There were sometimes
lawyers and doctors on the management committee amongst people
from other professional groups. And there were people from all walks
in life who came as volunteers at different times. And there was MC,
that represented Cheshire Home, and above them was the board of
trustees of the Cheshire Foundation as a whole. This foundation, as
mentioned above, still runs many institutions in and outside of the
UK.
After Paul moved in, the rights and freedoms of the residents were
being slowly eroded through measures such as tightening of wake
27
up/bedtime rules, application for going outside, relationships
between residents and volunteers (which was not rare. Paul and
Judy‟s relationship started off as one).
There was at one time a PWC chairman called Peter Wade who
against the oppressive management style of The Commander stood
up (Judy jokes “metaphorically…he was in a wheelchair so it wasn‟t
actually possible”) and publicly criticised him (in a meeting with
residents and staff present), and was ordered by The Commander to
“leave Le Court”. Paul and his friends discussed how they might help
Peter, and concluded that they would unite and that “everyone will
leave if Peter is thrown out”. This was reported in the local paper and
grabbed people‟s attention. The public opinion supported the
residents, and the MC, understanding that the situation was serious,
withdrew The Commander‟s order to Peter.
The objective of UPIAS, which was formed following an initiative by
Paul after he left Le Court, was as its name indicated, fighting
against segregation, and the entity that UPIAS held as the enemy,
the thing that needed to be fought against, was institutions, symbol
of segregation. In its policy statement, UPIAS clearly lists “replacing
of institutions” *7. However, at least around this time, dismantling of
28
institutions was not recognised as an issue in the battle Paul and his
fellow residents were fighting. Their struggle at the time was not to
demand life outside of institutions, but autonomy and reforms within
institutions in order to achieve dignified living for disabled people.
In any case, the way Paul and his friends formed PWC in order to
protect the dignity of their lives, sent its representatives to MC, which
managed and ran the institution, and the management‟s acceptance
of it, was noteworthy.
6. Compilation and Publication of Stigma, and Activities as a
DIG Member
In 1966, Paul, who was 28 by then, compiled a book. Stigma:
Experience of Disability. *8. It was a compilation of personal
experiences of disability by twelve people with physical impairments
but Paul‟s intention was not to create a “sentimental autobiography”
by unfortunate people that were common in those days too, but to
expose by putting each disabled person‟s experiences within the
29
context of social narrative, the problematic nature of the “normal
society” which keeps reproducing and propagating these
experiences for disabled people.
50% of the twelve authors including Paul, were female. Not all of the
twelve authors had severe impairments but a third of them had
experienced life in an institution as Paul had (Hunt, J, 2007:795) In
these essays by twelve authors that are disabled, a picture of very
wide-ranging problems faced by disabled people emerged. They
were, for example, poverty, discrimination, unstable employment or
being denied of it altogether, physical barriers, removal from access
to information about social services, over protectiveness by parents,
deprivation of sexual rights, expulsion from appropriate medical
services, etc. I reiterate that what Paul wanted to capture by
examining these individual negative experiences, is not only the
picture of unjust disability that the disabled people are forced to bear
but the ways of the “normal society” which continue to reproduce it.
The publication of this book caused not a small shock to the society.
Along with comments such as “The truth about disabled people is
laid out honestly”, “It is packed with anger”, etc. there were criticisms
about the fact that the book made a clear distinction between “they –
30
non disabled people” and “we – disabled people” and many of the
critics talked about the impact of this book (Hunt, J, 2007:797,
Eileen, D, 1966:20). In any case, there is no doubt that the book
“acted as the starting point of a long journey to find new social
awareness” (Hunt, J, 2007:797). One of the things that underpin the
claim that the book was a “starting point” is the fact that two of the
essays in Stigma (Battye, 1966, Chalmers, 1966) were used as texts
in the Open University course in 1974, which was the first disability
studies course in the UK.
Paul was contacted by many people after the publication of Stigma,
and he himself sought contact with various new people. Amongst
them was Megan Duboisson, founder of DIG (Disablement Incomes
Group). Megan was impressed by Stigma that Paul compiled, and
asked him to join DIG.
DIG was founded in 1965 by two disabled women, Megan and Berit
Moore (also known as Thornberry Stueland). What set it apart from
other disability organisations of the time was the fact that it didn‟t
confine itself to a particular type of impairment but rather it had as its
objective the removal of the financial and social disadvantages that
all disabled people were experiencing. Also, the members were not
31
limited to disabled people with shared aspirations, and experts who
shared the same awareness of the problems as the disabled people,
were allowed to join. Initially DIG dealt with many disability problems
but gradually shifted their focus on income compensation issue for
disabled people.
At the time, the only income compensation scheme in place for
disabled people was one relating to work related accidents, and
problems faced by disabled people that were not employed were
neglected. DIG paid special attention to the financial problems faced
by disabled women and congenitally disabled people, who didn‟t
have access to income compensation schemes, and went on to
actively engaging in lobby activities and campaigns demanding
reform of the existing income compensation schemes and
contributory pension schemes for disabled people towards building a
public income compensation system for them. (Finkelstein, 2004:7)
Paul quickly joined DIG after Megan‟s invitation, and was proactively
involved in its organisational activities (UPIAS, 1981a:8) until he set
up UPIAS, and through it met and communicated with many people,
expanding his network. Amongst them were Peter Large, founder of
Association of Disabled Professionals, Selwyn Goldsmith, who was
32
acting as a consultant to the government on accessible housing
standards, Peter Townsend, who although after the formation of
UPIAS went his separate way as a leader of Disability Alliance, at
the time had not a small influence on disability policy making, and
Ann Shearer, a freelance writer who was writing disability related
articles in The Guardian. (Finkelstein, 2004:9)
The reason why Paul was able to build such a wide network of
contacts is that DIG was as mentioned above, the first large, national
origination for disabled people in post-war Britain, and as Judy
describes “a melting pot”, the members included not only disabled
people but experts from many different professions.
DIG, which focused its activities on the issue of income
compensation, was soon exposed to have one weak point in its
strategy for the activity process. It was the lack of cogency caused
by the fact that they did not have economic evidence to support their
argument that there needs to be a reform and establishment of the
income compensation system (UPIAS, 1981b:3) In order to
overcome this weakness, DIG began to rely gradually more on
academics and professionals within the fields of economics and
policy making. In time, the focus of discussions and activities
33
amongst those experts that were entrusted with leading DIG, started
resting on the issues of entitlement for income compensation, and
definition of ‟‟disabled person”. This is because, without coherent
discussions about entitlement it is not possible to build an
administrative system for realising income compensation, and to
define entitlement was to define who were “disabled” and therefore
were entitled.
Thus, the income approach (Campbell & Oliver, 1996:56) that was
led by the experts in DIG, would converge their energy into
researches and data analysis to provide evidences relating to the
issues of „disabled person” definition and entitlement, but this
simultaneously alienated the lay disabled members. Naturally, their
frustration worsened and boiled over eventually as internal criticisms.
The criticisms, first of all, were targeted at “the colonization by the
experts”, and secondly at the medical model of “disability (disabled
person)” in connection with income compensation entitlement
(Finkelstein 2004:8), and thirdly the fact that the objective of the
organisation was focused on the acquisition of money (income
compensation) (UPIAS, 1981b:2)
34
Paul was one of the critics. He felt that there was a limit to what
DIG‟s approach, which was converging into one issue, income
compensation, could achieve. Also, according to Judy, Berit who was
the founder of DIG was critical of DIG‟s activities in its later days.
Following Paul‟s later comments within UPIAS, it is possible to
surmise that he learnt two things from “DIG‟s failure” (UPIAS,
1975:16). One was that in the battle against disability, the
organisations need to be controlled by the disabled people
themselves. Secondly, there needs to be a comprehensive/inclusive
approach to the issue of disability, not a focused action on one
specific issue.
In the radical world of current disability movements in Britain and
disability studies that is developing with their philosophy as its
foundation, there is noticeable criticism towards DIG, which is often
seen in contrast to the recognition of the achievement of UPIAS,
which proposed the social model. However, I think that the work and
achievements of DIG need to be properly assessed in the framework
of the modern history of British disability movement. This is because
DIG provided the opportunity for the „disability problem‟ to move
away from the deep-rooted traditions in two ways. One was to free
35
the disability problem from its definition as an issue within medical
category through its income compensation campaign demanding
pension schemes for disabled people (putting aside the tendency
towards medical model in the definition of “disabled people” in later
years). Another was, by establishing an organisational structure,
which encompassed different types of impairments, offering an
opportunity for disabled people who had traditionally been confined
in the ghettos of their respective impairment type to come together
and to share the understanding of universality of the „disability
problem‟. For example, Finkelstein, who was a member of UPIAS
from its early days, says of the significance of DIG in the disability
movement history:
The emergence of DIG was an early symptom of the shifting focus
away from
our „defective‟ bodies, which we had been conditioned into believing
was the
sum total of our misfortune, and onto the provision of benefits to
enable a more
36
equitable lifestyle in the community regardless of type of impairment
or where
this was acquired. (Finkelstein, 2004:7)
7. Perception of Disability
After moving to Le court, Paul read a great number of books on
diverse topics in order to catch up on the years of public education,
which was taken away from him in his mid-teens. Through this and
also the experience of living in an institution, he gradually became
interested in the social and psychological aspects of the “disability”,
and also started researching into lives at institutions. He was
interested in Christian theology, philosophy, social science, literature,
cinema, etc. In those days, he relaxed by talking, reading and
sunbathing (Hunt, P, 1966b)
For example, through works of James Arthur Baldwin, a black
American author who wrote on the problems faced by racial and
sexual minorities, Paul learnt about the social complex and
psychological pressure brought upon the black people by the
oppression of the society dominated by white people, and saw in it the
37
situation disabled people living in a society dominated by nondisabled people found themselves in. He was at the same time
reading many of the magazines and newsletters published by
regional/local disability groups/organisations (one example Judy
mentioned was a magazine called Magic Carpet published by the
Disabled Drivers Association) in order to gain a better and wider
perception about which issues relating to “disability” were being
discussed and from what angle. Also, he was interested in the papers
and books discussing the “disability” by the „experts‟, and was
attempting to deepen and strengthen his own thoughts/argument by
scrutinizing them with a critical eye.
Paul was thus a researcher driven by intellectual curiosity but at the
same time, he was also an activist who consistently led the struggle
for improvement in the lives of the residents (of institutions). Paul
continued to think about what the disabled people‟s rights are, and
how they can be achieved in institutions, engaging in actions to
realise them.
Paul contributed many articles to Cheshire Smile, a magazine, which
gave voice to the residents at Le Court. According to Judy, this
magazine was initially started as the house magazine of Le Court but
38
at some point – in the 1950s or early 1960s – it became the official
magazine of the Cheshire Foundation and all the Homes and
therefore had world wide circulation. However it continued to be
edited by a small committee of residents at Le Court throughout the
1960s. Paul was sometimes on that committee. The magazine not
only gave platform for discussions about residents‟ rights and social
justice, but also articles on a wide range of topics such as the difficulty
of financing the operations of institutions, assessment of the meals
and activities by the residents. Paul was responsible for the Comment
section of Cheshire Smile, and was trying to stimulate discussions
relating to improvements and reforms needed at Le Court and
residents‟ rights. He saw Cheshire Smile as a tool for continuous
discussion on disability, and called for participation in the discussion
in Cheshire Smile through various channels to the residents of
Cheshire Homes around the world. In a 1964 issue of Cheshire Smile,
Paul wrote:
I hope that Cheshire Smile is published every month, and that there is
a column
within it which gives voice to the reader‟s responses widely. Even
39
those who do
not know how to write articles can participate if it‟s in letter format.
Presentation
of their varied opinions would lead to discussions and this would
contribute to
the dynamic development of Le Court. (Hunt, P, 1964:38 – 39)
Through these days of research and action Paul began to perceive
physically disabled people as an oppressed group of people, to
recognise the problem of authorities that create this oppression, and
became more convinced about the severity of the problems presented
by the power of the experts and philanthropists that tries to control the
lives of the disabled people, and what lies at the very foundation of
society that gives rise to disability (UPIAS, 19811:p). Judy says of the
change that was taking place within Paul at the time:
Paul came to very critically regard medical and welfare professionals
who saw
themselves as acting “for disabled people”, for they exerted huge
power over
40
disabled people at that time. Although the professionals opinions. He
was always
saying “it was only by listening to disabled people that things will start
going in the
right direction”. (Hunt, J, 7/7/2011)
This deepening and expanding of Paul‟s perception of the problems
gradually directed his gaze outwards to outside the institution. He
slowly shifted his conscious focus of attention from “self-governance
by the disabled people in institutions” to confrontations with “disability
in society” that is prevalent outside the institutions. The belief in the
need for an independent organization – was more Paul‟s than that of
other residents, though it is likely he was discussing these thoughts
with a few sympathetic friends there.
The belief that they came to share through these discussions was that
in order to confront „disability in society‟, they need first of all is a fort
from which they can launch their battle, „own independent
organisation‟ outside the institution.
Paul was aware that as well as acting as a fort for the battle disabled
people were about to fight with disability that lay <outside> them, this
41
„own independent organisation‟ also filled the need for an arena/place
of mutual education in order for the disabled people to understand the
essence of the powerlessness that was <inside> them, and to be
empowered so that they can be freed from it.
He often said that “the disabled people need to free themselves”.
Disabled
people themselves needed to control ”their organisation”, learn the
necessary skills
to do so, gain confidence, and to become more capable. (Hunt J.
7/7/2011)
Soon Paul began to think about the possibility of disabled people,
including himself, living outside institutions. For example, he found out
about the Fokus Society project *9 in Sweden, which was being
piloted as an alternative to live-in institutions, and tried to promote it in
the UK (It didn‟t come to fruition in the UK but it was very successfully
introduced in several Scandinavian countries.)
42
8. Meeting Judy, Marriage and Leaving Le Court
Judy, who was born and raised in Hampshire, met Paul around 1963.
For her gap year after leaving school, she spent six months in
Switzerland, and on her return started working at Le Court as a
volunteer with/as an assistant to? a resident who was acting as a
manager of arts and craft workshops. Having befriended many of the
residents through this volunteering work, she began to want to work at
Le Court as a care staff, a wish, which was granted when a full time
paid position became available.
Judy worked in a team of care staff on the first floor –mostly women
residents there -. Care Staffs did not have specific residents they
were responsible for but helped anyone who needed their help. They
would get assigned certain duties at times and tended to become
more involved with some residents because they needed more help.
Judy often helped out at Paul‟s dining table because there were
several people who needed some assistance. At the meal table where
two women she became especially close to, was Paul. She listened to
Paul as she helped the two women eat their meals, and became
43
gradually attracted to him through his interesting stories and for his
leadership.
“Paul was extremely reserved and shy and therefore it wasn‟t easy to
approach him", so Judy "in a bold move" for her, asked one of the two
women who took their meals with Paul to "set them up".
Upon leaving Le Court in September 1964 Judy enrolled on an
Occupational Therapist course at a college in Devon, Exeter.
She spent the three-year duration of the course at the college's
accommodation. Paul and she stayed in touch with letters but their
relationship was not only subjected the usual hurdles faced by many
long distance relationships, but even bigger ones that come with
relationships between non-disabled and disabled persons.
First of all, there was the pressure from Judy's parents. They did not
see Paul as a good match for their daughter. Furthermore, Paul
himself was reluctant about future marriage. He was a devout catholic
with a hereditary (which is what he believed at the time) disability. As
a follower of Catholicism, which teaches that the purpose of marriage
is to bear children and to build a good family, Paul, who "should not"
recreate, could not see himself getting married. As such, theirs was a
"hopeless" at that point.
44
Shortly before she was to graduate, Judy was told by Paul that he
wanted to end their relationship, and could not return to Le Court after
she left the college. So she found a job as an occupational therapist
alongside some friends that she studied with on the course at a
hospital in north London. However, she did not want to give up on
their relationship and wrote to Paul telling him that she wanted to
continue with their relationship.
By that time, Paul had already published Stigma, and along with his
active involvement in the fight for self-governance by the residents at
Le Court, he had developed a network of contacts in external civic
organisations such as the National Council of Civil Liberty and White
Fathers (south American humanist activists organisation) was
reading a wide variety of literature concerned with socialist and
humanist philosophy. Complementing this in deepening his
understanding of the problems/awareness of the problem relating to
the social aspects of the "disability" was his discussions with some of
the famous/respected scholars who occasionally made visits to Le
Court. Moreover, it was around this time that Paul began to have
misgivings/doubts towards the teaching of Catholicism, which formed
the foundation of his values, and also prevented him from picturing a
45
future together with Judy. It is probable that behind this was his
criticism of Cheshire, who was a devout Catholic.
Thus, Judy's letter to Paul reached him at a time when his political
and religious stand was going through a change, and he had begun
to think and act with a free and positive outlook. Their relationship
resumed “with a light at the end of the tunnel“.
Around this time, Paul was beginning to think that the improvement
of institutions was not a fundamental solution to the “disability
problem” but had not yet grasped fully what the alternative is. He
was searching for a way for disabled people to integrate into the
society by looking for various experimental and real cases in and
outside of Britain of disabled people living outside institutions. Later,
Paul would write in Disability Challenge, UPIAS‟ open newsletter, a
critique of A Life Apart (Miller & Gwynne, 1972), written by
sociologist ** Miller and others (this critique was to be Paul‟s
posthumous article but he did not live to witness the start of this
UPIAS‟ first open newsletter), and as this article shows, Paul felt a
great amount of dissatisfaction and frustration at the way many of the
researches on the lives of disabled people at the time failed to
present any alternatives.
46
However, this was also a time when a promise of the possibility of
integration for disabled people began to emerge. Against the
backdrop of a powerful wave that was caused by rebellion against
management and human right abuse - social movements that
denunciated minority discrimination such as the civil rights and
feminism movements, defiance against the domination of medical
service by refusing conventional medicine, self management, self
help, etc. – the field of disability also saw development such as
community health movements and de-institutionalization movements
which were mainly in north America and were triggered by the
criticisms against mental hospitals and learning disability institutions,
and the dissemination of normalization philosophy and demand for
its actualization, which had begun in the Nordic countries. It is not
hard to imagine that Paul, who had many channels of information
gathering and a wide network, detected these signs of changes and
was seeking ways of developing these signs into something more
solid.
Paul and Judy married in 1970. Paul, who was 32 by this point, took
this opportunity to end his fourteen-year residence at Le Court. This
decision was very much Paul‟s and Judy‟s, and they were not asked
47
by Le Court to leave. According to Judy, although Cheshire and the
members of the Management Committee did not necessarily
welcome the vocal opinions and actions of Paul, who demanded selfgovernance by the residents within Le Court, they never lost their
respect for Paul. This is well illustrated by the fact that the
Management Committee asked Paul after he left Le Court to join as
an external committee member, as explained later in this paper.
Paul‟s refusal to compromise on his beliefs and policies made him
“not an easy person to be with“ but no one could deny the sharpness
and perspicaciousness of his mind, and his ability to drive forward
actions coupled with his negotiation skills. Also, after the publication
of Stigma, he occasionally contributed to The Guardian, and was
beginning to be recognised as an authority on the “disability”, and
had so much influence that no one could afford to ignore his words.
Around the time of Judy and Paul deciding to get married, views on
marriages were beginning to change drastically in Europe, and many
young couples sought freedom from “marriage as a social
institution”. Judy and Paul, despite feeling not a small amount of
sympathy with this type of radical philosophy, chose to marry. This is
because for them, marriage was also a way to declare to their
48
parents and relatives, who were refusing to bless their relationship
wholeheartedly, that they fully intended to stay together (not just live
together temporarily).
It was around 1967 that Paul and Judy decided to get married. They
began negotiating with the councils of Wandsworth, where Paul lived
before moving to Le Court (and had been paying for Paul‟s Le Court
accommodation cost) and Harringay in north London (which was
where Judy‟s work was located). After three years, they were
granted to live in a council housing in Harringay. Throughout the
process, whenever the Harringay council came with a suggestion of
a house, Judy, who was an occupational therapist, would go and
inspect the house, and pointed out things that needed altered.
However, the regulations on making alterations to council housing at
the time were strict, and Judy says that most of the accommodations
that were suggested to them by the council were not fit for Paul to
live in. Eventually, they found a place in a four-storey block of flats in
Chettle Cout In Harringay.
In 1970, Paul left Le Court and started living with Judy in a flat in
Chettle Court and began a job as a computer programmer. Whilst at
Le Court, he had completed a computer programming course with a
49
college in Leatherhead in Surrey. This was with a foresight to getting
a job after leaving Le Court.
They began to look for new house after a son was born in 1975. The
one bedroom flat in Chettle Court was too small to accommodate a
cot, a pram, Paul‟s electric wheelchair. After being told by Harringay
council that they could not give them a two bedroom flat unless they
had another child, they decided to buy a house in Enfield in north
London. By this time the combined income of Judy and Paul was
enough to get a mortgage to buy a house.
9. Rallying for UPIAS
As described earlier, Paul had already started to take part in some of
DIG activities whilst at Le Court. It was from there that Paul set off for
the 1967 demonstration in London, first direct action of DIG.
However, his activities during the time at Le Court were focused on
improving the institution through PWC. Paul‟s conviction for
improving Le Court i.e. facilitating autonomy and dignified living by
the residents, was strong and he felt responsibility towards the
50
wellbeing of the residents even after he left Le Court himself. For
example, when asked after leaving Le Court to join the board as an
external committee member, he replied “if that is what the residents
want” and served as a committee member for a year.
After moving to London, as well as attending the local DIG group
meetings, Paul was in touch with Central Council of Disabled, now
Radar (Royal Association for Disability and Rehabilitation), and
Spinal Injuries Association founder, Stephen Bradshaw, amongst
others. Much of his time was taken up however by his busy career as
a computer programmer, which meant that although he was in
contact with various organisations, he did not participate in their
activities as a member.
In 1971, a founding meeting for the Association of Disabled
Professional was held, and Paul and Judy attended this. It was at
this meeting, which around 1,000 people attended, they met for the
first time Vic Finkelstein and his partner, Elizabeth Finkelstein.
Vic was an activist who had fled South Africa for England in 1968
after being imprisoned for five years for his part in the campaign
against Apartheid (Finkelstein, 2001:1). It is said that meeting Vic
prompted a dynamic transformation in Paul‟s thought processes.
51
Ever since the time when he himself was a Le Court resident, Paul
had felt frustration towards the existing charity organisations, and
that they only wasted time and money while not contributing much to
solving the disability problem. He thought that it has to be the
disabled people themselves, who experience the disability on a daily
basis, that take action, and this sense that something needs to be
done was shaped into specific concepts through meeting with Vic.
The two couples met up sometimes but more often Vic and Paul
would meet up just the two of them and had discussions. They were
beginning to think that elements of the anti-Apartheid logic could be
applied to problems surrounding disabilities.
These discussions with Vic did not quell Paul‟s anxiety, which was
caused by the knowledge that more and more „experts‟ without
disability were joining the management of DIG. Paul was developing
an acute sense of crisis about this trend at DIG. His conviction for
the necessity for an independent and democratic organisation by the
disabled people themselves was growing stronger. The call for a new
organisation in The Guardian was written in this sense of urgency.
52
I am proposing the formation of a consumer group to put forward
nationally the
views of actual and potential residents of these successors to the
workhouse.
We hope in particular to formulate and publicise plans for alternative
kind of
care. I should be glad to hear from anyone who is interested to join
or support
this project. (Hunt, P, 1972)
Following this, Paul set up an organisation of disabled people in
1973 with the several tens of disabled people that responded to the
call (amongst them, of course, were Vic and Liz Finkelstein, Ken and
Maggie Davis, former of whom Vic would go on to become UPIAS‟
Philosophical leader with Paul and Ken who spearheaded the early
stages of independent living.in the UK, and some Le Court residents
that fought with Paul). It wasn‟t until after eighteen months of
discussions that this organisation began to call themselves UPIAS,
and to declare clear objectives and policies. (the discussions were
via UPIAS Circular except for the ones held at the first conference in
53
London in Oct 1974.). Paul would go on to shape and lead the
philosophical development and the activities of this organisations for
six years after its foundation until his death.
Paul Hunt passed away at the young age of 42 on 12 June 1979.
10. Epilogue
As set out at the beginning, this paper seeks to investigate into the
origin of the social model, and as the first step in placing within the
British political philosophy history the philosophy and activities of
UPIAS, examine the life history of Paul Hunt, who initiated the setting
up of this organisation and had a huge impact on its philosophical
development and activities, to illuminate his experience of
confronting disability in his life, and the process of philosophy
formation which was based on and nurtured by that experience.
Therefore, this paper only covers Paul‟s life up until the time of
UPIAS formation. I intend to examine the details of the intense
discussions that took place between the members in the eighteen
months after its formation, and internal discussions within and
54
activities of UPIAS leading up to the disbanding of the organisation
in 1990, in another paper.
Acknowledgements
I would like to convey my deepest gratitude towards Professor Colin
Barnes from the University of Leeds, whose help with regards to
introduction to people connected to UPIAS and access to UPIAS
Circular papers, was invaluable, and Judy Hunt, who was kind
enough to prepare many interesting materials for the two interviews,
which were long but she accommodated most generously, and she
read my draft and gave me insightful comments and suggestions.
Needles to say, I take full responsibility in this article.
Notes
55
1) Because of the disability that they were made to bear, the UPIAS
members found it extremely difficult to congregate physically and
their discussions were mainly carried out through circulars. This
ensured that the details of the internal discussions, which would
normally only be retained in the members‟ memory, were recorded. I
was fortunate enough to have access to all of these circulars from
Professor Colin Barnes whilst at the Centre for Disability Studies,
The University of Leeds, in 2011. Although more than 20 years have
passed since the dissolution of the organisation, UPIAS Circulars
remain confidential internal documents. Also, some ex-members
currently live in institutions and the possibility of the disclosure of the
articles in UPIAS Circular under their real names leading to some
detrimental situations for them cannot be ruled out. I fully intend to
handle these materials very carefully with Judy‟s comment engraved
on my heart “Please handle these Circulars with respect. It is to
respect the ex-members of UPIAS”.
2) I searched in BBC website archive but could not identify these
programmes, so these details are purely based on Judy‟s
recollection.
56
3) Please refer to http://www.lcdisability.org/ for more details on the
activities of the Leonard Cheshire Foundation.
4)This change in the terminology (from patients to residents) took
place around 1963, and symbolized the change in their position
within the institution, which they fought for over many years. In
relation to this, Paul said in Cheshire Smile about the terminology
such as patients/residents, matron/warden, etc. “In my philosophy,
words and actions cannot be separated…..new words bring about
new insight and therefore are extremely important in practice.” (Hunt,
P, 1967:1). This also explains his persistence on words such as
Union and Against Segregation when he set up UPIAS in later years.
5) These meeting notes summaries were prepared by a resident
called Philip Mason who would go on to be a member of Project 81
(consumer managed accommodation project. It was initiated at Le
Court by a group of residents who wanted to move out), and Judy
had copied these notes, which she found at Le Court, onto her own
notebook. After the interview with me, and approval from Philip, she
sent me copies of these notes together with her explanatory notes
(Mason, 1955 – 1964, Hung, J, 2011).
57
6) It was a meeting body which discussed matters relating to the
management of Le Court, and the members consisted of influential
people from the region such as lawyers, doctors, social workers,
bankers, business people, accountants, aristocrats and academics.
7) It should be pointed out that there was much debate within UPIAS
about this issue of the replacement of institutions (UPIAS, 1973a:6,
1973b:10 – 12, 1973c:7, 1974a:11, 1974b:3, 1974c:2)
8) This can currently be downloaded from the website of the Centre
for Disability Studies, The University of Leeds (http://www.disabilityarchive.leeds.ac.uk/). Rather than searching by the title, you‟d need
to search by the author of each article. So in order to read all of the
articles in Stigma, you‟ll need to first search for Hunt, as the
compiler, and download Contents, Stigma, and then search under
each of the author names or the article names listed.
9) Plans for accessible apartments with provision of care (Tanaka,
2005a:277).
10) Period before university when many young people engage in life
experiences such as traveling, work experience and volunteer
58
activities in order to gain something that cannot be acquired through
normal education channels.
11) For example, Paul was once asked to act as a consultant by the
municipal government of Norfolk/Norwich in relation to their building
of facilities for disabled people and achieving environments that are
suitable for disabled people to live in.
References
Barnes, C. and Mercer, G. (eds.), 1997, Doing Disability Research,
The Disability Press.
Barnes, C. and Mercer, G., 2003, Disability : Key Concepts, Polity
Press.
Battye, L., 1966, The Chatterley Syndrome, in Hunt, P. (ed.), 1966,
Stigma : The Experience of Disability, London : Geoffrey Chapman.
Brechin, A et al., 1981, Handicap in a Social World, Hodder &
Stoughton.
59
Campbell, J. and Oliver, M., 1996, Disability Politics, London :
Routledge.
Chalmers, R., 1966, Victim Invicta, in Hunt, P. (ed.), op.cit.
Cheshire, Leonard., 1998, The Hidden World, The Royal Air Force
Benevolent Fund Enterprises.
Cheshire, Lord, 1992, World War II Hero Who Founded Homes for
Sick, New York Times. August 2.
Eileen, D., 1966, Experience of Disability, in Cheshire Smile,
Winter/1966.
Finkelstein, V., 7/February/2001, A personal Journey into Disability
Politics, Leeds University Centre for Disability Studies.
Finkelstein, V., 26-28/July/2004, Disability Studies : Putting theory
into practise, Lancaster University, Phase 3 : Conceptualising New
Services. presented paper.
Hoshika Ryoji, 2007 What is Disability? : Toward Social Theory of
Disability. Seikatsu Shoin
Hunt, J., 2001, A revolutionary group with a revolutionary message,
Coalition.
Hunt, J., 2007, Classic Review, Disability & Society, Vol.22, No.7.
Hunt, J., 2011, Explanatory notes(unpublished).
60
Hunt, P., Winter/1964, Next ten years, Cheshire Smile, Cheshire
foundation.
Hunt, P., 1966a, Forward, in Paul Hunt.(ed.), op.cit.
Hunt, P., 1966b, A Critical Condition, in Paul Hunt. (ed.), Stigma:The
Experience of Disability, London:Geoffrey Chapman.
Hunt, P., Autumn/1967, Comment, Cheshire Smile, Cheshire
foundation.
Hunt, P., 1972, Letter to the Guardian (Origins of UPIAS), The
Guardian. Wednesday September 20.
Hunt, P., 1981, Setting accounts with the parasite people:a critique
of „A Life Apart‟ by E. J. Miller and G. V. Gwynne, in Disability
Challenge 1, UPIAS.
Ishikawa Jun & Nagase Osamu. (Eds.), 1999, Invitation to Disability
Studies. Akashi Shoten.
Mason, P., 1955-1964, Summary notes on the Le Court residents
meeting (unpublished).
Miller ,E, J. & Gwynne, G, V.,1972, A life apart: a pilot study of
residential institutions for the physically handicapped and the young
chronic sick, Van Nostrand Reinhold.Meijigakuin Ronso, 673, 33-61
61
Nakano Toshiko, 2002, Welfare for Learning Difficulties and the
definition of disability,
Ogawa Yoshimichi, 1998, Empowerment of Disabled Person. Akashi
Shoten.
Shakespeare, T., 1997, Defending the Social Model, Disability &
Society, 12(2), 293-300.
Shakespeare, T., 2000, Help, London : Venture Press.
Shakespeare, T., 2001, The Social Model of disability, Research in
Social Science and Disability, 2, 9-28.S
Shakespeare, T., 2006, Disability Rights and Wrongs,
London:Routledge.
Sugino Akihiro, 2007, Disability Studies : Theory Formation and
Range. University of Tokyo Press
Tanaka Koichiro, 1999, Trends in Studies of Disability Movements,
and Subjects for Future Study. Bulletin of Northern Regions
Research Center for Human Service Studies, 5, 1999. Tanaka
Koichiro, 2001, A History of disability movements in Britain : On the
Developement of it's Values Human Welfare Studies, 4.
62
Tanaka Koichiro, 2003, Disability Movement and Consumerism in
UK : Centering around the controversy of Direct Payment. Human
Welfare Studies, 6, 1-13, 2003.
Tanaka Koichiro, 2005a, Creating New Human Values in The
Disability Movement: Comparative Studies of Disability Movements
Between Japan and Britain. Gendai Syokan.
Tanaka Koichiro, 2005b, The Disability Movement and Theory of
New Social Movements. Journal of Disability Studies, No.1.
Tanaka Koichiro, 2007, Have the social model been subsuming into
“Learning Difficulties”? Journal of Disability Studies, No.3.
Thomas, C., 1999, Female Forms, Buckingham : Open University
Press.
Thomas, C., 2007, Sociologies of Disability, ‘Impairment’and Chronic
Illness, London: Palgrave.
UPIAS,1973a, UPIAS Circular.2, Union of the Physically Impaired
Against Segregation: London
UPIAS,1973b, UPIAS Circular.3, Union of the Physically Impaired
Against Segregation: London
UPIAS,1973c, UPIAS Circular.4, Union of the Physically Impaired
Against Segregation: London.
63
UPIAS,1974a, UPIAS Circular.6, Union of the Physically Impaired
Against Segregation: London.
UPIAS,1974b, UPIAS Circular.7, Union of the Physically Impaired
Against Segregation: London.
UPIAS,1974c, UPIAS Circular.10, Union of the Physically Impaired
Against Segregation: London.
UPIAS,1975, UPIAS Circular.15, Union of the Physically Impaired
Against Segregation: London.
UPIAS,1981a, Obituary, UPIAS, Disability Challenge 1, Union of the
Physically Impaired Against Segregation : London.
UPIAS, 1981b, Editorial, UPIAS, ibid.
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