Linking Lives

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Linking Lives Times Connecting Biography,
Disability History

• Sonali Shah Mark Priestley
• Centre for Disability Studies
• E-mail s.l.shah_at_leeds.ac.uk

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Themes

• Project Overview
• Key Questions
• Theoretical Framework
• Case Studies
• Family Life Education
• Concepts Conclusions
• Has Life Changed for Disabled People in Post War
  Britain?

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Project Overview

• Part of 3 year Nuffield Foundation fellowship
• Life story interviews with 50 physically disabled
  people, living in England, born in the 1940s, the
  1960s, and the 1980s.
• Explore actual change in disabling societies via
  empirical life histories from different
  generations.

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Key research questions

• Has life changed for disabled people since WWII?
• What are the resources that make a difference in
  disabled peoples lives? Have they changed over
  time?
• To what extent has social policy made a
  difference to the experiences of disabled people?

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Theme Education family life

• How has segregated educational provision
  affected disabled childrens family lives and
  relationships since the 1940s?
• Make links between public and private/ macro and
  micro
• Connecting policy analysis with qualitative life
  history data
• Interplay between personal agency and social
  structure

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Some public policies

• Family
• Increasing support for families of disabled
  children (Whizz Kidz Aiming high)
• 1993 Standard Rules on theEqualization of
  Opportunities for Persons with Disabilities
• United Nations Convention on the Rights of
  Persons with Disabilities 2008
• Education
• Warnock Report 1978 Education Act 1981 SENDA
  2001 DDA 2005

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Method Sample

• Generation 1 born post-war and completed
  secondary education before 1970
• Generation 2 started school before 1970 and
  completed secondary education after 1981 Act
• Generation 3 started school after 1981 Act and
  completed secondary education after DDA

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• Experiences of Mainstream
• I mean, obviously my disability was noticeable,
  so youd get kids calling you names, you know,
  but once they realised that, you know, that you
  would join in football and everything else, like
  anybody else, I think nobody then bothered at
  all. (Dan, 1940/50s)
• It bulling wasnt constant, it wasnt really
  malicious either. It was just somebody needed a
  target and I was the easiest one, so, I dont
  know. It was, it was traumatic at the time
  (Steve, 1980/ 90.)

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• Level of Choice
• it was suggested by the medical profession that I
  should go to a special schooland people like
  doctors and that were very, in a very
  authoritative position, people thought that they
  knew best. (Dan, 1940s)
• I think me mum looked at specialist, because she
  didnt realise mainstream was an option it was
  practically unheard of then I suppose to have
  disabled kids in mainstream school she mum
  spoke to a few other parents of children around
  my age who were looking at the possibility of
  sending their kids to mainstream school (Steve,
  1980s)
• my mother started to fight the entrenched values
  of the education system to enable me to go into
  mainstream education (Harvey, 1980s)

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• In hospital away from family
• THEN 1940s
• I remember going up to London, because I was in
  Hospital in London, we lived in Kent at the time,
  quite a long way from the major London hospitals.
  I dont know why my parents wanted me to go to a
  London Hospital but I can only think that maybe
  the regional ones werent yet NHSI was four
  years old I think and I didnt understand
  anything that was happening my parents just
  kind of left me there and it was just absolutely
  devastating to be left in this huge hospital with
  these strangersI think my parents came every
  other weekend cos they didnt have a car or
  anything like that to start off with, so they
  came up on the steam train.
• NOW 21st Century
• Now parents are able to go into hospital, or at
  least one of the parents is able to go into
  hospital with them, and stay with them. So
  theres a constant continuity of parental
  support. And nowadays people would be very
  supportive of the child, but in those days they
  werent at all.

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• In School away from family
• The education of disabled children going up to
  the 1960s was actually controlled by the health
  service and not by education, so they had quite a
  large say in where disabled children went, and
  they felt it was best to send me away to a
  special school, for my mum and for me (Bob,
  1950s)
• I got left at this school when I was four years
  old I was crying my eyes out cos my mum and dad
  had left me (Tan, 1960s)
• I was a Monday to Friday boarder because the
  orthopaedic surgeon at the time wasnt thrilled
  with the thought of me travelling from here to
  there twice a day(Ian, 1960s)

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• Impact of childhood separation on family
• I mean my sister never wanted to play with me, if
  she did play with me, if one of her friends
  called I would be dropped like a ton of
  brickThere was always that kind of rivalry
  thereI found her very rejecting (Daisy, 1940s)
• I never really kind of saw my parents as my
  parents cos I didnt know who they were. Do you
  know what I mean? They were just people who used
  to come and see me (Tan, 1960s)

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• Separation from local peers
• with mainstream schools youre within a
  catchment area and so you live near your friends.
  The school I went to, because it was special
  needs school, it really wasnt like that. People
  came from all over the placewhen I got home I
  was at home and there was nothing for me outside
  of home. (Holly, 1980s)
• my sisters went to infant and junior school at
  local schools, they knew a lot of local people as
  a result. With me, because I went to this school
  which was a little distance away I missed out on
  that sort of thing a lot. Thats why Im a firm
  believer that schools shouldnt be
  segregated(Ant, 1960s)
• I didnt know anyone, I had no local friends I
  didnt really want to go home because what was
  there? (Bob, 1950s)

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• Turning Points Agency vs structure
• the secondary school, which is two three miles
  away, has stairs. The school wanted me to go to a
  special school. And my mum put her foot down and
  said no way, she will go to the school. Cos we
  had stairs, and even with one calliper I could
  get up and down the stairs and erm, so I went to
  the ordinary school (Maggie, 1940s)
• I was very, very lucky because the only reason I
  left my special school was that the teacher who
  had been assigned to my class and had the most to
  do with me throughout my time at my special
  school, saw that I had the potential and the
  ability to survive in a mainstream environment.
  So she took her free periods off when she wasnt
  teaching. She took me to the local primary school
  and made sure that I did maths and science along
  with kids at the local primary school. But she
  fought against the rest of the school and to some
  extent the apathy of my parents to get me out of
  the school. (Helen, 1980s)

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Theoretical Framework

• Personal biographies are windows to social,
  cultural and policy change in Britain (C Wright
  Mills, Sociological Imagination)
• Connect structure/ agency, individual/ social
• a social model approach - disabled people are
  not the subject matter of disability studies
  (Finkelstein 2001)
• critical realism disability is real (social
  relations, institutions and barriers)

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(No Transcript)
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• Temporal realities change over time
• Policies institutions come go (1944 Education
  Act)
• Disabling barriers created removed (designated
  employment/ sheltered workshops)
• Relationships transform
• Narrative accounts of disabling barriers are
  temporally situated ? changing societies

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Generation 1 Total 12 (M 1 F 11) Born in 1940s/ grew up 1950s (now ages 58-67) 1942 Beverage Report 1943 Second World War 1944 Education Act 1946 National Health Service Act 1948 National Assistance Act 1950s Steel lightweight wheelchairs
Generation 2 Total 20 (M 5 F 15 Born in 1960s/ grew up 1970s (now ages 38-47) 1962 Declaration for the Rights of Disabled Persons 1970 Local Authority Social Services Act 1970 Chronically Sick and Disabled Persons Act 1976 Disabled Peoples Movement 1978 Warnock Report 1978/9 Independent Living
Generation 3 Total 11 (M 4 F 7) Born in 1980s/ grew up 1990s (now ages 18-27) 1981 International year of disabled people 1981 Education Act 1990 Community Care Act 1995/ 2005 DDA 2001 SENDA
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Concept of Time

• Chronological time - e.g. a law changed in 1995
  or the economy changed in 1973
• Biographical time - e.g. things that happened in
  childhood, adulthood, (when I was 18)
• Generational and historical time - important to
  remember that life has been 'different' for
  different generations of young disabled people.

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Some conclusions in our research

• real disabling barriers can only be understood
  and observed through disabled peoples empirical
  realities
• experiences of disability do differ and impacts
  the life course at different points in time
• institutions, environmental barriers, andhuman
  relationships are important factors that shape
  people's lives or careers

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Has life changed for disabled people in post-war
Britain?

• Thoughts Questions