exploring the intersection through family narratives Abstract
This article is concerned with the intersection between learning difficulties and social class. It also inevitably tells of the gender-class interface in relation to women’s caring roles. I use the life story narratives of four families of a person with learning difficulties, together with concepts from Bourdieu, to explore the ways in which class-related capital and habitus affect their life experiences and their interactions with educational and other professionals. The data are the stories of grand/mothers reflecting on life events, particularly in relation to decision-making surrounding education, while simultaneously providing subtle, rich pictures of their socio-economic contexts. I illustrate how privilege and disadvantage are reproduced partly for the families through their institutional interactions which are differentiated according to economic and social resources. The stories re-presented in this paper provide powerful examples of how experiences of living with learning difficulties and disabilities are situated in one’s class position and how struggles for inclusion are at once common and particular.
The focus of International Studies in Sociology of Education on the intersection of class, race, gender and disability, reflects wider, growing recognition of the need to elicit understanding about how ‘multiple axes of difference’ (Benjamin, 2003) interact and may lead to a compounding of difficulties (see e.g. Ahmad, 2000; Fazil et al, 2003), without reducing analysis to a simple add-on model in which notions of double disadvantage enhance the notion of passive, tragic victims (Morris, 1993). The intersection between learning difficulties and social class is one that is little researched and poorly understood, despite a relationship between the two having been significantly exposed decades ago in the seminal work of Sally Tomlinson (1981, 1982). Tomlinson showed how working class pupils, and particularly black boys were more vulnerable to being labeled and excluded into special schools and units for ‘moderate learning difficulties’ or ‘emotional and behavioural difficulties’. Moreover, Tomlinson (1988) has argued the need for a critical theory perspective, recognizing the structural rather than simply personal or environmental explanations for such unequal patterns in schooling mirroring unequal patterns in society. Statistics from this decade (DfES, 2004) indicate that in the UK at least the relationship between poverty and special educational needs has persisted with free school meals, the indicator used for deprivation, being strongly correlated with special educational needs (though not accounting for all the differences between ethnic group attainment (DfES, 2005)).
Attempts to explain the relationship between special needs and ethnicity (and with this often also gender and social class) have explored within-child factors, environmental influences, the social practice of identification of difficulties, classroom interactions and expectations, engagement with services, curricular explanations, and institutional discrimination. Interest has also focused on the ways in which middle class parents have used/abused education systems within the culture of school choice to benefit their children (Ball, 1993) including children with special needs (Riddell, Brown & Duffield, 1994). Interest in differential parental involvement in children’s schooling has also dwelt on gender and the way in which discourses of educational support mask the ways in which this is the emotional care work of mothers, whose emotional work is mediated by class and race positions but theirs as a moral imperative (O’Brien, 2007).
In a different body of literature, connections have been made between social class and disability, and more specifically identifying ‘social class as an outcome of the social production of disability’ (Allen, 2004, p.488). Social and economic barriers to social inclusion are, as Shakespeare (2006) argues, harder to remove than architectural and other barriers and so poverty persists. Disabled people are statistically more likely to live in poverty due to their exclusion from the workplace and social class is ‘integral to the embodied experience of disability’, which ‘this then affects the propensity of some (but not other) disabled people to resist their embodiment of disability and thus socio-spatial exclusion’ (Allen, 2004, p.488).
Sociologists have focused more on adults with physical impairments in a disabling society, or on ‘forms of SEN where subjective and relativistic judgement has a greater influence on diagnosis’, where ‘the risk of social bias affecting the processes of identification and assessment will be greater’ and where institutional discrimination abounds (Frederickson and Cline, 2002, p.7). Thus, with the exception of work on poverty, there remains limited understanding of the ways in which social class interacts with learning difficulties/disabilities in affecting life experiences of individuals and their families.
Aims and approach
In this paper I analyse the intersection of social class and learning difficulties through an exploration of the themes emerging from the different life stories of families of an adult with learning difficulties. The stories were collected for the different purpose of exploring the unofficial histories of people with learning difficulties across three chronological periods of the twentieth century, illustrating continuity and change across the decades. The Witnesses to Change project (Rolph et al., 2005) gathered rich narrative accounts from 28 families of people with learning difficulties in which the life stories were written, told orally, or gathered through open interview. The stories include a diverse range of families and the influence of the social and cultural backgrounds of the families on their experiences cries out for further examination.
I engage in secondary analysis of the narrative life history data of four white British families to ask how class-related cultural factors shape people’s lives. These are lives told by three mothers and one grandmother, each in their own words such that they are able to ascribe their own personal meanings to life experiences (Sparkes, 1994; Atkinson & Walmsley, 1999) though inevitably retold through my selection of segments. Therefore the stories offer counter-narratives to dominant narratives (Preece, 1994; Curtin & Clarke, 2005), though the stories of the people with learning difficulties themselves, not recounted here, might tell different stories again. At no time in this paper do I label the families as working, middle or some other class. There are three reasons for this. First and foremost this discourse and these classifications were never used by the narrators to describe themselves. Second, I lack the data on the economic facts of household incomes, status of housing, free school meals and the like to make such classifications (and anyway labour market class distinctions don’t fit well with women (Reay, 1998)). Third, I need to take great care with my language as I want to debate the issues without reflecting and reproducing the inequalities and stereotypes that are the subject of the study (Clough & Barton, 1998). Nonetheless, the women in these stories are not classless; they experience enduring patterns of inequalities which filter their everyday experiences via an interaction of objective constraints and subjective consciousness as in Reay’s (1997) understanding of social class: “Even when class is not overt and articulated in people’s decoding of the social world, it is still there as part of the implicit, taken-for-granted understandings they bring to their relationships with others (Reay, 1997 p.227). tThe narratives tell much of the economic and other resources at the families’ disposal. They tell too, in Bourdieusian terms, of habitus and of economic, cultural, social and symbolic capital in ways that contribute richly to our picture of the intersections of class-related capital and life with a disabled family member.
I have retained from the original project the essential element of the families telling the stories in their own words, seeking to retain the integrity of the narrative. I have, however, purposefully chosen four particular narratives that are particularly illuminative of the various forms of capital at work. And I have condensed the narratives from their original published forms to their bare bones. Nonetheless, the chronology is unchanged and no new words are ascribed to the narrators. I have selected parts of their texts that illustrate critical points in educational decision-making against the backdrop of the families’ socio-political contexts. This is made possible because the narrators place themselves in context through their accounts and their portrayals of what is ordinary and familiar to them.
I have used an informal, inductive process of content analysis to elicit key themes; I let the stories talk to me about social class. I then re-visited the process and the emergent themes using Bourdieu’s concepts, which I found, as they have been previously described, ‘enormously good to think with’ (Jenkins, 1992 p.11).
There are ethical issues in re-using the life stories in a way not initially envisioned or discussed with the project participants. There was no deception involved in this. The analysis discussed here was not one of the original intentions and not even imagined until later. The original story tellers took ownership of their accounts, checking and re-checking them before placing them in the public domain. Many (three of the four re-visited here) chose not to be anonymised, demonstrating as British Educational Research Association (2004) revised ethical guidelines concede, ‘researchers must also recognize participants’ rights to be identified with any publication of their original work or other inputs, if they so wish’. I take great care in using these narratives gathered in relationships of trust (see Walford (2005) for a discussion of the ethics of non/anonymity). It is important to emphasise also that the analysis here is mine and not that of the original story tellers and other editors. I use Bourdieusian theory concepts of capital and habitus to help understand the processes at work in the lives they describe, but all this is propositional and unconfirmed by the central players.
The life stories
Rachel (Monk, 2005)
It all just happened in the last few minutes of the birth, the last about 25 minutes before Rachel was born, everything went wrong. …
Rachel is suing them. … It's up to her what she does. … We were speaking to a couple of medical experts who came down to London and spoke to the Barrister. It has come as a shock to us really, but they said if somebody had held Rachel's head off the cord while they were preparing for a caesarian then she would have been all right.…
I remember asking for physiotherapy for Rachel, but whether it actually helped her I'm not sure. I obviously didn't think we were getting enough help because when she was about three we started going to a private clinic with her. …
If she had been getting ordinary services I think she would have gone into the system a bit more and into a special needs school. I was determined that she wasn’t going to go. We had a really excellent educational psychologist, and he started coming to the house. … So I've had his support through the years; any problems in the school I would pick up the phone and say, "Rachel's missed out on this", or something like that, and he would be right down there and sorting it out for us. …
We met quite a few families through going there [private clinic]. .. We did take a break from the clinic and went to the Peto Institute in Hungary for a while. ... I found out they were going to set up a clinic at Longtown (nearby) … and decided to give that a try. We paid for the Peto and the psychologist arranged for us to go and meet the Director of Education. He came down and watched her on the programme and realized how good it was so they paid for the next visit to Hungary and … they funded it for us to go to Longtown. …
Rachel's very involved in the village because I wouldn't send her away to school. I thought it was better if she stayed here where people knew us and could help. The mothers would pop in and bring their children. …
She went to college and she got settled in and had a really brilliant support worker. … but there was this problem of transport, because she lives over the border they wouldn't fund her. … The MP stepped in and there was so much support for Rachel. There are so many people that know her now… Eventually they gave in and funded it.
Rachel’s story is in many ways a story of networks and a family using them for the benefit of their child. There is resonance here with Reay’s (2000) account of mothers’ emotional capital (not a concept from Bourdieu but from Nowotny, 1981), in which mothers get very involved in their children’s educational lives and so pass emotional as well as other resources on to their children. It Rachel’s story is also reminiscent of McKeever and Miller’s (2004) Bourdieusian analysis of mothers of children with disabilities. McKeever and Miller (2004, p.1183) explain that, ‘At times, given their relative lack of capital and consequent powerlessness within the medical field, many mothers actively sought out the assistance of intermediaries who had symbolic or cultural capital that could be deployed on their behalf’. They go on to describe the intricacies of this approach, however, as mothers in their studies feared the consequences for their children of being too difficult or gaining too much power from the professionals, such that they also knew when to acquiesce to the dominant players; they learned when to be quiet and how not to alienate. One gets hints from the success she has achieved that Rachel’s mother has become practiced at using networks and making judgments.
For McKeever and Miller, mothering children with disabilities is a project in improving the social value and positioning of their children through their deployment of the various forms of capital at their disposal. For Bourdieu (1986), of course, economic capital is the root of all of other forms of capital into which it can be transformed. It may not be subtle but Rachel’s family have bought private provision and financed the seeking of expert help. They have built social networks around and for Rachel. And they have reproduced emotional and social capital for her, passing on to her an ability to make and use connections, through which she may even gain financial independence through action through the courts.
The next story is in which a family with friends lacks social capital because, I would argue, there is a lack of underpinning economic capital.
Mark (Mark’s mum, 2005)
He wasn’t a happy baby, you could tell there was something. He was about 16 months when he walked and he was late sitting up. His speech was late. I asked a health visitor about the speech a few times and she sent us to a clinic. They did a test to see if he was deaf, and that was all right. So we went a few times and she said "Oh, I think he is OK", so that was it, we didn't bother any more and she signed us off. …
I was at the doctor's and we mentioned that we thought he was a bit behind, but he said, "Well, just leave him until he starts school, and then we will see how he progresses." So, he started full-time school the day after his fourth birthday. After a few weeks the headmistress asked to see me. She said she thought there was something up with Mark; she said "I think he is part spastic." I got this feeling, as if someone had just kicked me. …
The doctor said he wasn’t spastic, but he made us an appointment at the hospital to see a paediatrician. He was diagnosed with apraxia…After that he had to go and see a psychologist, who said he could have extra help at school.
[Mark’s mum’s story continues to describe the onset of headaches when Mark was nine, the discovery of an inoperable a brain tumour and a period of radiotherapy.]
While we were in the hospital, this lady, a social worker perhaps, came round and had a form. … She asked us if we were managing financially, and if we had any HP, debts and mortgage. She said we could apply for benefits. I said, “We won't be entitled to any benefits as my husband David is working and I have worked part time”. Nothing was mentioned about Mark’s illness and whether he might be entitled to benefits. … I didn’t know you could claim for a child with a serious illness, nobody mentioned anything like carer's allowance or disability payment for Mark. … I feel like we weren’t given all the information at the time, which had a big impact later on… the fact that we hadn’t claimed seemed to make a big difference later on.
After Mark came home he went to a special school. … A year later when it came to going to secondary school, we were advised to choose a small school. We had to go before a board because it wasn’t our catchment area. [Mark got in but they did not pass on his records.] … He just did three GCSEs because they said it would be too much to try and do more… He got low grades but we were proud as punch of his achievements.
[The life story continues with Mark going to college, looking for a job and then having a stroke.]
He missed two beds over in Newcastle and we knew that the more help you got straight after a stroke the better. It turns out there might have been a funding issue between the two hospitals and we were caught up in it, but we certainly didn’t know what was going on. When you are worried about somebody you don’t need extra stress and pressure. All we wanted was the truth about the situation and the best care for our son. If you are not a pushy person it is really hard. We felt if we didn’t push for Mark, nobody else was going to bother. You feel as if you are a troublemaker, it really did make us feel uncomfortable to be continually asking questions and not being allowed to speak to the decision-makers. Finally after weeks of struggling Mark got his place at Hunters Moor. …
[Mark’s story continues with him getting a job, struggles over benefits that were never resolved, and his death.]
Marks’s mother celebrates Mark’s achievements and social life (see full account), yet, she recounts much more on the troubles she experienced in getting the resources needed for Mark. She is explicit about her discomfort in having to adopt the role of agitating for resources - battling for services. Being a good mother sometimes means playing according to rules and sometimes means engaging in conflictual relations with professionals (McKeever and Miller, 2004). But the less capital one has, the less comfortable one is likely to be with taking on those imbued with cultural, economic and symbolic capital. Coming from a different habitus does not change Mark’s mother’s obligation to do the care work she does but her efforts may not be recognized as concerned mothering rather than trouble-making (O’Brien, 2007). Allen (2004) uses Bourdieu’s theory that ‘constant exposure to (for example, privileged, deprived) socio-economic circumstances produces a social-class habitus—i.e. an orientation towards the body and its place-in-the-world that is the product of, and which corresponds with, one’s socioeconomic position. He demonstrates this in the field of visual impairment, and Mark’s mother demonstrates it here. She does not want to challenge expectations about their place in the world, but she does want what she sees as Mark’s basic rights.
The next two stories offer a further study in contrasts.
Alex (Colquhoun, 2005)
Alex, my grandson, was born on 14 October 1973 at Queen Charlotte’s hospital in Hammersmith. He was very much a wanted baby and my daughter Gillian and his father Jonathon were delighted to have a boy. My husband wanted Gillian to come to England to have her first baby because he knew the problems being born in another country could cause in later life; they were living in Switzerland at the time, for Jonathan’s work.Gillian was looked after by Mr Lewis who had looked after me at Guy’s hospital when she was born in 1948 and who was now a senior consultant at Guy’s and Queen Charlotte’s. As far as we knew it was a perfectly normal pregnancy and perfectly normal birth. At first Alex seemed all right, but then they found he was mildly jaundiced and he lost weight and was not feeding properly. They took a specimen of urine and, as Gillian and Alex were home at my flat by then, the head pediatrician came rushing round about 9pm and said that he was to go on to an antibiotic at once as he had a severe infection. …
An old family nanny said he sounded like other Colquhoun boys who, when they were young tended to be rather lazy and sat down and were slow to crawl and to walk while the girls ran around. Gillian was told that he would be six months behind because of his operation and one accepted that. …
[The story skips through Alex’s early life in Switzerland and then a move to South Africa for Jonathon’s work.]
For the first year they took out a Swiss girl to help look after Alex and of whom Alex was very fond as he had been with her in Lausanne. Then Alex had a very nice black nanny called Sarah. … [Alex’s sister was born and his grandfather died.]
When Gillian could return we had an appointment for Alex at Great Ormond Street with Dr Brett a consultant neurologist. He was very kind and arranged for a psychologist to assess him too. They both felt that he should on no account be labeled at this young age. …
Alex went to an ordinary private nursery school, which he loved … but he still had very little speech. In 1977 it was felt he needed more help than the playgroup could offer and he managed to get a place at a very good modern school, Forest Town School for Cerebral Palsied Children. …
From some of my contacts I heard of Camphill schools and was told of Cresset House, Camphill Training Centre for Children in Need of Special Care. This was outside of Johannesburg and meant a long hot drive twice a day but it was a good school and the only suitable one. Alex went there from 1978 to 1979. …
In January 1980 Alex came to England and he became my charge. I have acted as his guardian since then. With all the best medical and educational psychologists advice at Great Ormond Street and Riverside Health Authority, it was decided that Alex should remain in my care in London and go to a very good boarding school, St Joseph’s Special School in Cranleigh, Surrey. It was a Roman Catholic school for boys up to twelve years. I was told of it by a friend at Mencap, who knew of a doctor in Kensington who had a boy of Alex’s age who was very happy there. …
Alex settled down very happily at St Joseph’s and soon made friends. .. it was a dreadful shock to have a letter from the bishop saying he would have to close the school in July 1981, as he could not get enough nuns and he could not afford lay staff. In the meantime the fees would go from £3,000 to £6,000 …. I discovered then, which I had not known before, that we were one of very few parents paying fees. …
It was amazing how many professional people one had to deal with and organizations one had to join to do the job of being a grandmother and guardian properly. I used to spend my entire life at coffee mornings to raise money all over Kensington and Chelsea, and we all met at Mencap meetings. …
On April 7th 1982 I took Alex down to Ongar to see Great Stony School, meet the head, Mr Barnes, and most important, to see the junior house Bowes and Mrs Hicks who was in charge of the young boys. Bowes was made as homely as possible and teddies on the beds were encouraged. … Alex was there from 1982 to 1990, from when he was eight to sixteen. …
Great Stony was so good for the children, they were frightfully well fed and it was spotlessly clean. When they returned to school at the start of a new term they wore their own clothes and after lunch they were given a bath or shower and dressed in their very nice school uniform; they had nice green blazers and had to learn to tie a school tie every morning. …
When we had to find a good college for Alex to go to from Great Stony from sixteen to eighteen, I was very lucky that everyone agreed that if he were accepted Lufton Manor Rural Training Unit near Yeovil in Somerset would be the best place for him. [Alex got his place at Lufton Manor] … If he had got a place at Oxford it could not have meant more. …
I think, looking back, that it was probably a good thing that I knew nothing about children with learning disabilities as, apart from his school work which I knew would be very difficult for him, I saw no reason why he could not learn to behave as well as other children. As he was always very independent and liked to do things for himself it worked well for Alex. He was asked to normal children’s parties. He flew home to South Africa for school holidays with only an airhostess to look after him. Because he could be trusted to behave he had a far better life than otherwise would have been possible.
Social capital is a dominant theme once again in this grandmother’s story. Bourdieu (1993, p.143) defined social capital as the ‘contacts and group memberships which, through the accumulation of exchanges, obligations and shared identities, provide actual or potential support and access to valued resources’. The support for Alex gained from this family’s contacts is self-evident. But it is also apparent that while aspects of a privileged habitus are self-sustaining, his family spent time working at them. By accumulating and deploying various forms of capital, people can transform their social positioning and that of their offspring even taking into account the impact of disability. This is what his grandmother does for Alex. She, like Rachel’s mother, is able to soften the classification and negative impact of ‘special needs’. ‘Given the social positioning of people with disabilities in ableist societies’, McKeever and Miller (2004, p.1181) postulate, ‘mothers’ accounts of their behaviours could reflect attempts to improve the social value and positioning of their children through the acquisition and deployment of various forms of capital within such fields as the family, paediatric medicine and long-term care’. This story bears this out. Alex’s attendance at a boarding school with aspects in common with the boarding schools of other family members helps to raise his standing among his family network. Moreover, his placement in sheltered vocational college is equated with a place at Oxford. Like Oxford, the college offers the means for the young person to better himself, and so is a prize worth having in the project of preserving and reproducing habitus.
I have drawn heavily on the echoes between the stories and processes re-presented in this paper and those analysed by McKeever and Miller and I do so once more. McKeever and Miller (2004) draw attention to mothers’ management of their children’s presentation and argue:
Since bodies are particularly salient to women, they invest heavily in efforts to ensure the best possible bodily presentation of their children. Mothers in all three studies paid very close attention to ‘the body’ in order to compensate for disabled children’s devalued bodily capital, and to achieve the symbolic recognition and social value required to secure their entitlement to personhood. (p.1186)
Alex’s presentation is important to his grandmother. He is well turned out and he has impeccable manners. She is conscious of the benefits afforded to him by this - how this has been part of his passport to a normal life with normal peers.
Raymond (Winder, 2005)
I have five boys and a girl. … And then there was Raymond. Born 1960. He were born on Marsh [housing estate in Lancaster]. ... It was quite an experience for anybody, considering I didn't know nowt. … I was backward myself, I always was - but I never liked school anyway…
I wouldn't know if there was summat wrong with him or not, but he always had bronchitis and pneumonia in that house. … He was a lovely baby, was Raymond. It was a shame he weren't like the other lads. I mean all the other lads and Pauline was perfect in every way, they had nowt wrong wi' them, but Raymond was just the opposite. He's the only one I had at home. Whether it was just one of them things I don't know. He probably took after me, but I wasn't deaf and dumb, you see, but Raymond was. …
He had to go through all these operations when he was little. … When he was at infant school, they said there was summat wrong with Raymond but they couldn't pinpoint what it was, why he couldn't speak. So they arranged for me to see a specialist at clinic. …
He was only there until they got him to that special school. … He used to get a lot of abuse, like kids do at that age at Marsh Infants. … They didn't want him to go out of town because I was always ill so they decided to wait until Sunnyfield School was built. … I had to take him to school on the bus because we had no transport, no bus pass. … And then eventually they got a bus at the bus station.
[His mother describes how Raymond learned to travel with the other children, to talk, to fight.]
I always went to see his pantomimes and things like that because it was a good school really. I think they did marvelous for Raymond. …
We never expected anybody to do things for us; we did it ourselves. We just looked after ourselves, once the kids started getting a bit older. We didn't depend on anybody. We never had social workers. They never came to see how Raymond was or how the family was. … I wouldn't ask anybody for anything because I was brought up bad myself. …
When he was ready for leaving school he went to college on Morecambe Road. That's where the teacher said he'd be best at college for a year or two, just give him some idea.
Families like Raymond’s rarely get to tell their own stories in their own words. Raymond’s mother though gives important insights into family life and critical incidents in her children’s upbringing and education. Lareau (1987, p. 74) described how family-school interactions, like other social relationships, ‘carry the imprint of the larger social context’ and this is apt here too. Interactions between Raymond’s family and the authorities reflect their socio-economic and socio-geographic positioning. Lack of economic capital, together with bodily and intellectual capital, have combined to close down opportunities to build other kinds of capital and left Raymond’s mother with few resources with which to perform her emotional care work.
The direct contrast between these latter two stories brings into sharp focus the relevance of Bourdieu’s interest in the way that the routine behaviour of individuals is largely determined by the history and structure of their existing social environment, and how their actions within their taken-for-granted social worlds unintentionally contribute to the maintenance of existing hierarchies (Jenkins, 1992). The stories illustrate the Bourdieusian concept that logical adjustments occur between individuals’ hopes, aspirations and expectations and the reality of their existing social situation. In this way realism about the future is anchored in the actuality of the present, such that what is attempted is principally that which is possible: ‘subjective expectation of objective probabilities’ (Jenkins, 1992 p.28). The dispositions of all the primary caregivers discussed here are ‘durably inculcated by the possibilities and impossibilities, freedoms and necessities, opportunities and prohibitions inscribed in the objective conditions’ (Bourdieu, 1990, p.54). This provides the constraints but according to Bourdieu (1990) there are freedoms too, associated with getting a ‘feel for the game’, that is, using ones individual skill and social competences to strategise a route to one’s goal. Evidently some of the families have a better ‘feel for the game’, but this has not interrupted the ability of education and society to reproduce powerful and powerless social positions.
There are four essential points I wish to make in summative discussion. Firstly, the now grown-up children in these narratives are undeniably affected by ‘within-child’ factors - intellectual or bodily impairments - but these do not make societal factors any less potent. Gutierrez & Stone (1997) argue that in avoiding both individualised notions of causality and over-simplified environmental determinism, we need to look at how individual and environmental variables interact. I do not dispute this but I return to Tomlinson’s early argument and maintain that we must view this through the lens of structural inequalities which persist. The individuals discussed in this paper were to some extent able to 'take up, resist and manoeuvre around the subject positions on offer to them' (Benjamin et al., 2003: 548), but those subject positions were real and constrained. Benjamin et al. (2003) argue that a post-structuralist view allows us to see how children are produced, and produce themselves, as included and excluded. In this paper we see this with families.
Secondly, for all these families mothers/grandmothers recounting lives with their (grand)child with learning difficulties, struggle is common. All the families experience a lack of power in the face of medical and educational institutions. But, according to class-related capital, their resources to deal with these struggles with more powerful institutions differ and their social networks differ. This is particularly pertinent when the identification of ‘special educational needs’ is a fundamentally social process involving 'a panoply of unspoken assumptions, covert cues and responses' (Carrier, 1990, p. 21). The people in a position to diagnose, label and Statement did so willingly or reluctantly, with and without regard to individuals’ feelings and dignity, influenced by the class-related capital and self-certainty (Reay, 1997) they saw before them.
Thirdly, while all the life stories describe family members (and their networks) fighting for their children, there are important differences in their attitudes to the fight. Rachel’s mother is matter-of-fact about challenging the medical profession through the courts. Alex’s grandmother is resigned to politely yet assertively getting provision for him. These are their entitlements. For Mark’s mother, though, there is much greater discomfort around the fight: “If you are not a pushy person it is really hard. … You feel as if you are a troublemaker, it really did make us feel uncomfortable…”. The fight is not born out of a sense of entitlement but of necessity – there is no one else to do it and no other option. These differences are powerful illustrations of differences in habitus reminiscent of Allen’s (2004) examination of how middle class parents of visually impaired children demanded mobility aids ‘in order to overcome the manner in which visual impairment threatened their ‘natural right’ to occupy [valued] social space’ (p.488), whereas working class parents were more likely to tacitly accept that they had limited opportunities in the world.
Fourthly, there are differences in how proactive or reactive the families (or more specifically, the families grand/mothers - for it is the women carers who are most likely to be directly involved in the interactions, decisions and generation of capital (Reay, 2000)) are in response to the difficulties faced by the disabled children/young people. These are differences in who arranges access to the specialists and ultimately who steers the process. Engagement with ‘the teacher-judge, the doctor judge, the educator-judge, the social worker judge’ (Foucault, 1979, p.304) was inevitable, but the interactions with these judges took different patterns. Rachel’s mother and Alex’s family grandmother were often proactive, they often thought ahead to the next stage in a strategic way – what will Rachel or Alex need to make a success of mainstream schooling or semi-independent living – who will I need to see? Mark and Raymond’s families mothers predicted the difficult times ahead but often seemed to feel (and were) powerless to make much impact. Their engagement with educationalists, psychologists, and physicians was more like a round of decisions being made for them, of paths being steered from outside the family, for example, “she sent us to a clinic”; “after that he had to go and see a psychologist”; “they arranged for me to see a specialist at clinic”; and “ they got him to that special school”. This is a very different voice from “we started going to a private clinic with her”, “I wouldn't send her away to school” and “we had to find a good college for Alex”. These differences tell something about agency. Families can oscillate between having agency and losing agency, fighting and acquiescing. McKeever and Miller (2004) show this in a general sense, while this paper, I argue, shows this in a specific, differentiated sense in which not all families are equal.
The stories re-presented in this paper provide powerful examples of how experiences of living with learning difficulties and disabilities are situated in our our class position whether or not we are conscious of this. . This situating in social class, I maintain, is more nuanced than simple middle/working class distinctions based on male-work related definitions. Bourdieusian social theory provides better tools, particularly capital and habitus, with which to understand the class-related processes going on – we can see how the capitals available to the families differ and some of the consequences of this. The social se are processes described and analysed in this paper are ones in which struggles are both common and particular. Learning difficulties and other disabilities may become evident whatever one’s socio-economic or class position, but what happens next is a different story.
I wish to acknowledge the families whose stories I have re-presented here and the researchers, editors and British Institute of Learning Disabilities who enabled the narratives to be gathered and published.
I also thank the anonymous reviewers for their helpful suggestions.
Ahmad, W.I.U. (Ed.) (2000) Disability, ethnicity and chronic illness (Buckingham, Open University Press).
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