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Linking Lives & Times: Linking Lives & Times: Connecting Biography, Connecting Biography,

Disability & HistoryDisability & History

Sonali Shah & Mark Sonali Shah & Mark PriestleyPriestley

Centre for Disability Centre for Disability StudiesStudies

E-mail: s.l.shah@leeds.ac.ukE-mail: s.l.shah@leeds.ac.uk

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ThemesThemes• Project OverviewProject Overview

• Key QuestionsKey Questions

• Theoretical FrameworkTheoretical Framework

• Case StudiesCase Studies– Family Life; EducationFamily Life; Education

• Concepts & ConclusionsConcepts & Conclusions

• Has Life Changed for Disabled People Has Life Changed for Disabled People in Post War Britain?in Post War Britain?

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Project OverviewProject Overview

• Part of 3 year Nuffield Foundation Part of 3 year Nuffield Foundation fellowshipfellowship

• Life story interviews with 50 Life story interviews with 50 physically disabled people, living in physically disabled people, living in England, born in the 1940s, the England, born in the 1940s, the 1960s, and the 1980s. 1960s, and the 1980s.

• Explore actual change in disabling Explore actual change in disabling societies via empirical life histories societies via empirical life histories from different generations.from different generations.

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Key research questionsKey research questions

• Has life changed for disabled people Has life changed for disabled people since WWII?since WWII?

• What are the resources that make a What are the resources that make a difference in disabled people’s lives? difference in disabled people’s lives? Have they changed over time?Have they changed over time?

• To what extent has social policy To what extent has social policy made a difference to the experiences made a difference to the experiences of disabled people? of disabled people?

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Theme: Education & family Theme: Education & family lifelife• How has segregated educational How has segregated educational

provision affected disabled children’s provision affected disabled children’s family lives and relationships since family lives and relationships since the 1940s?the 1940s?– Make links between public and private/ Make links between public and private/

macro and micro macro and micro – Connecting policy analysis with Connecting policy analysis with

qualitative life history dataqualitative life history data– Interplay between personal agency and Interplay between personal agency and

social structuresocial structure

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Some public policies Some public policies • Family: Family:

– Increasing support for families of disabled Increasing support for families of disabled children (Whizz Kidz; Aiming high) children (Whizz Kidz; Aiming high)

– 1993 Standard Rules on the1993 Standard Rules on theEqualization of Opportunities for Persons Equalization of Opportunities for Persons with Disabilities with Disabilities

– United Nations Convention on the Rights United Nations Convention on the Rights of Persons with Disabilities 2008of Persons with Disabilities 2008

• Education Education – Warnock Report 1978; Education Act Warnock Report 1978; Education Act

1981; SENDA 2001; DDA 20051981; SENDA 2001; DDA 2005

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Method & SampleMethod & Sample• Generation 1: born post-war and Generation 1: born post-war and

completed secondary education completed secondary education before 1970before 1970

• Generation 2: started school before Generation 2: started school before 1970 and completed secondary 1970 and completed secondary education after 1981 Acteducation after 1981 Act

• Generation 3: started school after Generation 3: started school after 1981 Act and completed secondary 1981 Act and completed secondary education after DDAeducation after DDA

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• Experiences of Mainstream Experiences of Mainstream I mean, obviously my disability was I mean, obviously my disability was

noticeable, so you’d get kids calling you noticeable, so you’d get kids calling you names, you know, but once they realised names, you know, but once they realised that, you know, that you would join in that, you know, that you would join in football and everything else, like anybody football and everything else, like anybody else, I think nobody then bothered at all. else, I think nobody then bothered at all. (Dan, 1940/50s) (Dan, 1940/50s)

‘‘It [bulling] wasn’t constant, it wasn’t really It [bulling] wasn’t constant, it wasn’t really malicious either. It was just somebody malicious either. It was just somebody needed a target and I was the easiest one, needed a target and I was the easiest one, so, I don’t know. It was, it was traumatic at so, I don’t know. It was, it was traumatic at the time’the time’ (Steve, 1980/ 90.) (Steve, 1980/ 90.)

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Level of ChoiceLevel of Choiceit was suggested by the medical profession that I it was suggested by the medical profession that I

should go to a special school…and people like should go to a special school…and people like doctors and that were very, in a very doctors and that were very, in a very authoritative position, people thought that they authoritative position, people thought that they knew best. knew best. (Dan, 1940s)(Dan, 1940s)

I think me mum looked at specialist, because she I think me mum looked at specialist, because she didn’t realise mainstream was an option… it was didn’t realise mainstream was an option… it was practically unheard of then I suppose to have practically unheard of then I suppose to have disabled kids in mainstream school… she [mum] disabled kids in mainstream school… she [mum] spoke to a few other parents of children around spoke to a few other parents of children around my age who were looking at the possibility of my age who were looking at the possibility of sending their kids to mainstream schoolsending their kids to mainstream school (Steve, (Steve, 1980s)1980s)

my mother started to fight the entrenched values of my mother started to fight the entrenched values of the education system to enable me to go into the education system to enable me to go into mainstream education mainstream education (Harvey, 1980s) (Harvey, 1980s)

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• In hospital away from familyIn hospital away from family[THEN – 1940s][THEN – 1940s]I remember going up to London, because I was in I remember going up to London, because I was in

Hospital in London, we lived in Kent at the time, Hospital in London, we lived in Kent at the time, quite a long way from the major London hospitals. I quite a long way from the major London hospitals. I don’t know why my parents wanted me to go to a don’t know why my parents wanted me to go to a London Hospital but I can only think that maybe the London Hospital but I can only think that maybe the regional ones weren’t yet NHS…I was four years old regional ones weren’t yet NHS…I was four years old I think and I didn’t understand anything that was I think and I didn’t understand anything that was happening… [my parents] just kind of left me there happening… [my parents] just kind of left me there and it was just absolutely devastating to be left in and it was just absolutely devastating to be left in this huge hospital with these strangers…I think my this huge hospital with these strangers…I think my parents came every other weekend ‘cos they didn’t parents came every other weekend ‘cos they didn’t have a car or anything like that to start off with, so have a car or anything like that to start off with, so they came up on the steam train.they came up on the steam train.……

[NOW – 21[NOW – 21stst Century] Century]Now parents are able to go into hospital, or at least one of Now parents are able to go into hospital, or at least one of

the parents is able to go into hospital with them, and the parents is able to go into hospital with them, and stay with them. So there’s a constant continuity of stay with them. So there’s a constant continuity of parental support. And nowadays people would be very parental support. And nowadays people would be very supportive of the child, but in those days they weren’t at supportive of the child, but in those days they weren’t at all.all.

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• In School away from familyIn School away from family

The education of disabled children going up to the The education of disabled children going up to the 1960s was actually controlled by the health 1960s was actually controlled by the health service and not by education, so they had quite a service and not by education, so they had quite a large say in where disabled children went, and large say in where disabled children went, and they felt it was best to send me away to a special they felt it was best to send me away to a special school, for my mum and for me school, for my mum and for me (Bob, 1950s)(Bob, 1950s)

I got left at this school when I was four years old… I I got left at this school when I was four years old… I was crying my eyes out ‘cos my mum and dad was crying my eyes out ‘cos my mum and dad had left me…had left me… (Tan, 1960s) (Tan, 1960s)

I was a Monday to Friday boarder because the I was a Monday to Friday boarder because the orthopaedic surgeon at the time wasn’t thrilled orthopaedic surgeon at the time wasn’t thrilled with the thought of me travelling from here to with the thought of me travelling from here to there twice a day…there twice a day…(Ian, 1960s) (Ian, 1960s)

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• Impact of childhood separation on Impact of childhood separation on familyfamily

I mean my sister never wanted to play with me, I mean my sister never wanted to play with me, if she did play with me, if one of her friends if she did play with me, if one of her friends called I would be dropped like a ton of brick…called I would be dropped like a ton of brick…There was always that kind of rivalry there…I There was always that kind of rivalry there…I found her very rejectingfound her very rejecting (Daisy, 1940s) (Daisy, 1940s)

I never really kind of saw my parents as my I never really kind of saw my parents as my parents ‘cos I didn’t know who they were. Do parents ‘cos I didn’t know who they were. Do you know what I mean? They were just people you know what I mean? They were just people who used to come and see me (who used to come and see me (Tan, 1960s) Tan, 1960s)

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• Separation from local peers: Separation from local peers: ……with mainstream schools you’re within a with mainstream schools you’re within a

catchment area and so you live near your friends. catchment area and so you live near your friends. The school I went to, because it was special The school I went to, because it was special needs school, it really wasn’t like that. People needs school, it really wasn’t like that. People came from all over the place…when I got home I came from all over the place…when I got home I was at home and there was nothing for me was at home and there was nothing for me outside of home. (outside of home. (Holly, 1980s) Holly, 1980s)

……my sisters went to infant and junior school at local my sisters went to infant and junior school at local schools, they knew a lot of local people as a schools, they knew a lot of local people as a result. With me, because I went to this school result. With me, because I went to this school which was a little distance away I missed out on which was a little distance away I missed out on that sort of thing a lot. That’s why I’m a firm that sort of thing a lot. That’s why I’m a firm believer that schools shouldn’t be segregated…believer that schools shouldn’t be segregated…(Ant, 1960s)(Ant, 1960s)

I didn’t know anyone, I had no local friendsI didn’t know anyone, I had no local friends … … I I didn’t really want to go home because what was didn’t really want to go home because what was there?there? (Bob, 1950s) (Bob, 1950s)

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• Turning Points: Agency vs structureTurning Points: Agency vs structure

[the secondary school], which is two three miles away, [the secondary school], which is two three miles away, has stairs. The school wanted me to go to a special has stairs. The school wanted me to go to a special school. And my mum put her foot down and said ‘no school. And my mum put her foot down and said ‘no way, she will go to the school’. Cos we had stairs, way, she will go to the school’. Cos we had stairs, and even with one calliper I could get up and down and even with one calliper I could get up and down the stairs and erm, so I went to the ordinary school… the stairs and erm, so I went to the ordinary school… (Maggie, 1940s)(Maggie, 1940s)

I was very, very lucky because the only reason I left my I was very, very lucky because the only reason I left my special school was that the teacher who had been special school was that the teacher who had been assigned to my class and had the most to do with me assigned to my class and had the most to do with me throughout my time at my special school, saw that I throughout my time at my special school, saw that I had the potential and the ability to survive in a had the potential and the ability to survive in a mainstream environment. So she took her free mainstream environment. So she took her free periods off when she wasn’t teaching. She took me periods off when she wasn’t teaching. She took me to the local primary school and made sure that I did to the local primary school and made sure that I did maths and science along with kids at the local maths and science along with kids at the local primary school. But she fought against the rest of the primary school. But she fought against the rest of the school and to some extent the apathy of my parents school and to some extent the apathy of my parents to get me out of the school. to get me out of the school. (Helen, 1980s)(Helen, 1980s)

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Theoretical FrameworkTheoretical Framework

• Personal biographies are windows to Personal biographies are windows to social, cultural and policy change in Britain social, cultural and policy change in Britain (C Wright Mills,(C Wright Mills, Sociological Imagination)Sociological Imagination)

• Connect structure/ agency, individual/ Connect structure/ agency, individual/ socialsocial

• a social model approach - disabled people a social model approach - disabled people are not the subject matter of disability are not the subject matter of disability studies (Finkelstein 2001)studies (Finkelstein 2001)

• critical realism – disability is real (social critical realism – disability is real (social relations, institutions and barriers)relations, institutions and barriers)

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Barriers

Relationships

Institutions

Disa

bility

Life

‘Real’‘Actual’‘Empirical’

Ou

r Re

sea

rch

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Temporal realities – change over Temporal realities – change over timetime

• Policies & institutions come & go Policies & institutions come & go (1944 Education Act) (1944 Education Act)

• Disabling barriers created & removed Disabling barriers created & removed (designated employment/ sheltered (designated employment/ sheltered workshops) workshops)

• Relationships transformRelationships transform• Narrative accounts of disabling Narrative accounts of disabling

barriers are temporally situated barriers are temporally situated changing societieschanging societies

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GeneratioGeneration 1n 1Total = 12 Total = 12 (M: 1; F: 11) (M: 1; F: 11)

Born in Born in 1940s/ grew 1940s/ grew up 1950sup 1950s

(now ages (now ages 58-67) 58-67)

1942: Beverage Report1942: Beverage Report

1943: Second World War1943: Second World War

1944 Education Act1944 Education Act

1946 National Health Service Act 1946 National Health Service Act

1948 National Assistance Act1948 National Assistance Act

1950s: Steel lightweight 1950s: Steel lightweight wheelchairswheelchairs

GeneratioGeneration 2n 2

Total = 20Total = 20(M: 5; F: 15(M: 5; F: 15

Born in Born in 1960s/ grew 1960s/ grew up 1970sup 1970s

(now ages (now ages 38-47) 38-47)

1962: Declaration for the Rights 1962: Declaration for the Rights of Disabled Persons of Disabled Persons

1970: Local Authority Social 1970: Local Authority Social Services Act Services Act

1970 Chronically Sick and 1970 Chronically Sick and Disabled Persons ActDisabled Persons Act

1976: Disabled People’s 1976: Disabled People’s Movement Movement

1978: Warnock Report 1978: Warnock Report

1978/9: Independent Living1978/9: Independent Living

GeneratioGeneration 3n 3Total = 11 Total = 11 (M: 4; F: 7)(M: 4; F: 7)

Born in Born in 1980s/ grew 1980s/ grew up 1990sup 1990s

(now ages (now ages 18-27) 18-27)

1981: International year of 1981: International year of disabled people disabled people

1981 Education Act1981 Education Act

1990: Community Care Act1990: Community Care Act

1995/ 2005: DDA1995/ 2005: DDA

2001: SENDA2001: SENDA

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Concept of TimeConcept of Time

• Chronological time - e.g. a law changed in Chronological time - e.g. a law changed in 1995 or the economy changed in 19731995 or the economy changed in 1973

• Biographical time - e.g. things that Biographical time - e.g. things that happened in childhood, adulthood, (“when happened in childhood, adulthood, (“when I was 18”) I was 18”)

• Generational and historical time - Generational and historical time - important to remember that life has been important to remember that life has been 'different' for different generations of 'different' for different generations of young disabled people. young disabled people.

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Some conclusions in our Some conclusions in our researchresearch

• real disabling barriers can only be real disabling barriers can only be understood and observed through understood and observed through disabled people’s empirical realities disabled people’s empirical realities

• experiences of disability do differ and experiences of disability do differ and impacts the life course at different impacts the life course at different points in time points in time

• institutions, environmental barriers, andinstitutions, environmental barriers, andhuman relationships are important human relationships are important factors that shape people's lives or factors that shape people's lives or careers careers

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Has life changed for Has life changed for disabled people in post-disabled people in post-

war Britain?war Britain?

Thoughts & QuestionsThoughts & Questions