Linking Lives & Times: Connecting Biography, Disability & History

Linking Lives & Times: Connecting Biography, Disability & History Sonali Shah & Mark Priestley Centre for Disability Studies E-mail: s.l.shah@leeds.ac.uk

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

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.

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

Theme: Education & family life • How has segregated educational provision affected disabled children’s 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

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

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

Experiences of Mainstream I mean, obviously my disability was noticeable, so you’d 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] wasn’t constant, it wasn’t really malicious either. It was just somebody needed a target and I was the easiest one, so, I don’t know. It was, it was traumatic at the time’ (Steve, 1980/ 90.)

Level of Choice it was suggested by the medical profession that I should go to a special school…and 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 didn’t 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)

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 don’t know why my parents wanted me to go to a London Hospital but I can only think that maybe the regional ones weren’t yet NHS…I was four years old I think and I didn’t 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 strangers…I think my parents came every other weekend ‘cos they didn’t 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 there’s a constant continuity of parental support. And nowadays people would be very supportive of the child, but in those days they weren’t at all.

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 wasn’t thrilled with the thought of me travelling from here to there twice a day…(Ian, 1960s)

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 brick…There was always that kind of rivalry there…I found her very rejecting (Daisy, 1940s) I never really kind of saw my parents as my parents ‘cos I didn’t know who they were. Do you know what I mean? They were just people who used to come and see me (Tan, 1960s)

Separation from local peers: …with mainstream schools you’re within a catchment area and so you live near your friends. The school I went to, because it was special needs school, it really wasn’t like that. People came from all over the place…when 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. That’s why I’m a firm believer that schools shouldn’t be segregated…(Ant, 1960s) I didn’t know anyone, I had no local friends … I didn’t really want to go home because what was there? (Bob, 1950s)

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 wasn’t 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)

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)

Disability Barriers Relationships Our Research Life Institutions ‘Empirical’ ‘Actual’ ‘Real’

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

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.

Some conclusions in our research • real disabling barriers can only be understood and observed through disabled people’s 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

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

Linking Lives & Times: Connecting Biography, Disability & History