This paper elucidates a methodological approach to interview text that tries to acknowledge the psychosocial nature of disability and thereby ensuring that empirical work in disability studies complements theoretical arguments already developed.
The aim of this study is to outline a psychosocial conceptualisation of maternal subjectivity in relation to childhood disability and to apply this conceptualisation as an analytic tool to segments of an interview with a mother of a child with physical and developmental disabilities.
Drawing on psychoanalysis and attachment literature alongside critical social psychology we take readers through the analysis of an interview extract with a particular mother. Through a fine grained analysis, we demonstrate the value of attending to the affective processes in and around the text rooted in the particular intersubjective exchange (‘here and how’) of the interview and the particular socio-historical context (‘there and then’) in which the mother, child and researcher are located.
The reading draws attention to discourses that position this particular mother and her children in particular ways while also pointing to investments in these discourses such that these discourses are not purely social but play affective functions.
This paper demonstrates the value of using multiple lenses to read the text, seeking to understand what is going on from within each lens (discursive/social, interpersonal, intrapsychic), while also seeking to disrupt this understanding as we take up the position of a different lens. This approach enables us to hold onto the complexity and locatedness of maternal subjectivity for mothers of children with disabilities.
Our approach in this study is, firstly, to develop a rationale for a psychosocial conceptualisation of disability by providing a brief outline and critique of two distinct areas of research or theorising relevant to childhood disability – the social model of disability and the attachment literature. We argue that these totally separate bodies of work point to the social–psychological dualism in the literature which maintains the false and unhelpful division between inner and outer worlds critiqued in an emerging field of research called psychosocial studies. This argument is not new within the field of disability where Shakespeare (
In the second part of the study, we briefly outline a conceptualisation of subjectivity as psychosocial before thickening this description in the context of childhood disability through its application to a reading of interview segments with a mother of a disabled child. We try to demonstrate how such a conceptualisation attempts to hold onto the gains of both more traditional psychological research and more critical social research without reducing each to one part of a causal relationship. It is hoped that in this regard the study contributes towards ongoing work to develop sufficiently complex and yet pragmatic analytic methods for qualitative research in childhood disability studies. In particular, we argue that the strength of the analytic approach that we outline lies in its aims to both understand and disrupt subjectivity.
There has been much historical and contemporary theorising about the terms used to describe people with disabilities, emphasising the ways in which language is used for social and economic purposes. Linton (
Despite the strides made in conceptualising disability as ‘an experience that arises out of the interaction between a person with a health condition and the context in which they live’ (Schneider
Nevertheless, for all the strengths of the social model, many of which still need to be realised in the South African context, the subjectivity of the disabled person tends to fall into the cracks between their impairment and their context. With the emphasis of the social model approach on discrimination and systematic exclusion, Watermeyer (
In sharp contrast to this exclusively social emphasis, within developmental psychology and mental health more generally there has over the past decade been an explosion of attachment-based research and interventions. Research has found that sensitive and responsive attunement by caregivers to infants’ and toddlers’ behaviours is associated with improved child development in non-disabled children (Shonkoff & Phillips 2000 cited in Dunst
The sensitive and responsive attunement by caregivers that is being promoted in these early intervention programmes is based on attachment research, which is now well established, that identifies three patterns of attachment, namely secure, insecure and insecure ambivalent (Ainsworth
From this attachment perspective, an explicit aim of early interventions for both non-disabled and disabled infants and their caregivers is therefore to support the parent–child relationship, and this is done by focusing on something called ‘mentalising’. Mentalising is ‘attending to states of mind in oneself and others’ (Allen
Thus far we have outlined literature that either emphasises the social at the risk of emptying out the subjectivity of disabled people and their caregivers or emphasises relational and individual capacities of caregiver–child relationships at the risk of ignoring the broader social context, which provide the conditions for this relationship. Such a division between inner and outer worlds fails to account for the complexity of lived experience, and such accounting is necessary to do justice to the qualitative data that we collect in our research as well as to the human experiences we encounter in our therapeutic work. An alternative to the social-psychological dualism described thus far lies in an emerging field of research called psychosocial studies, which argues that deconstructing social discourses to understand and challenge ableism only takes us part of the way. While applauding the social model for excavating the social, economic and political processes linked to discrimination against disabled children and their caregivers, a psychosocial approach is also concerned with the extent to which purely discursive explanations are limited by their inability to conceptualise disableism ‘in its least “signifiable” aspects’ (Hook
A psychosocial perspective, while not at odds with the critical realist perspective espoused by Shakespeare (
Psychoanalysis, as a body of theory has been consistently drawn upon in psychosocial work with its emphasis on language and the construction of meaning through language as a point of continuity with discursive work. What psychoanalysis brings to discursive work is an emphasis on the affective realm and a rich vocabulary for capturing intersubjective encounters without limiting the analytic gaze to only what is said. Rather, what is absent and yet structuring of the present is equally important in understanding subjectivity. Psychoanalysis, with its emphasis on the unconscious as that which always hides and yet finds expression in some altered form (Frosh
the existence and constraints of social, cultural and communicational arrangements of which people are unaware. Unaware, in so far as these arrangements are not perceived (not ‘known’), and if perceived not acknowledged (‘denied’), and if acknowledged, not taken as problematic (‘given’), and if taken as problematic, not considered with an optimal degree of detachment and objectivity.
This position is not dissimilar to Goodley’s (
For the purposes of this study, we draw on contemporary attachment theory (Fonagy
We are interested in the extent to which a contemporary attachment theoretical framework, in particular, is conducive to a rethinking of the subject–other relation, one that rejects an a priori division between inner and outer worlds outlined above and possibly allows for some ‘rehabilitation’ of the social model of disability. Central to this endeavour is the concept of mentalisation, which is defined as a process of imaginative mental activity that involves perceiving and interpreting the intentional mental states of ourselves and of others (Fonagy
There is a further quality to mentalising that enables a critical use of contemporary attachment theory: the extent to which the opacity of the mind is upheld. An essential quality to holding someone’s mind in mind is recognising that one can never really know the other. In this regard, we might think of the social model as playing a significant role in upholding the opacity of the mind, as Kittay (
From this perspective, perhaps we are not entirely in agreement with Shakespeare’s (
To summarise, we have above been describing a psychosocial theoretical perspective from which to view subjectivity in disability studies. Such a perspective attempts to blur the boundaries between the social and the psychic and argues that psychoanalysis can be usefully employed in this regard to see the ‘we’ and the ‘I’ as inseparably connected, as not joined together but as never individually conceived. We have extended this discussion with the concept of mentalisation as providing us with a means to both understand and disrupt ourselves and others in context. It is these opposing movements of understanding and disruption, or interpretation and interruption that the analysis below aims for in putting the concept of mentalisation to work.
The methodological approach employed is binocular in its emphasis on both top-down interpretations, employing discourses and mentalisation as central theoretical concepts, alongside a bottom-up approach that grounds interpretations in the text (its content and structure) and in the research encounter (non-verbal aspects of the relational field, captured directly after the interview but also present in the analysis). Such an approach has been conceptualised as a concentric reflexive approach (Saville Young & Frosh
For the purposes of this study, we would like to focus on a particular fairly lengthy extract, which is taken from an interview that Jessie conducted as part of a broader research project on caregiving of disabled children. Jessie is a white woman and at the time of conducting the research was a psychology student in her early twenties, and the participant, Irene, is a white, non-disabled woman employed as a secretary, who is also a mother to a 13-month-old non-disabled daughter and a 6-year-old son with physical and developmental disabilities. The following extract has been chosen for its emotional content in particular pointing to active meaning making on behalf of both Irene and Jessie:
J: ‘What about other sorts of stress, you’ve mentioned that you’re worried about losing your job.’
I: ‘Ya um I take him to therapy once a week and my bosses are getting a bit tired (J: mm) of me taking time off ‘cause I’m a receptionist and I can’t really take time off but I’ve got an understanding boss, they’ve both got kids (mm) so it’s just one day they might have enough, say look you can’t do this anymore, thank you goodbye (mm) basically what I’m stressing about at the moment ‘cause we’ve got to take him to PE in October for an eye op and well eye test (mm) and see the paediatrician (…) and that’s also a bit stressing me out at the moment, we don’t know what the eye doctor will say about his eyes that the main because he does have a bit of a squint (okay) (…)’
J: ‘Sorry I was going to ask you something and it totally slipped my mind now (embarrassed, flustered). So how do you deal with that stress?’
I: ‘(…) I shout, get very frustrated and I take it out on the people closest to me (…) which I shouldn’t, I should rather step away from the situation, go for a walk (mm) but instead of that I take it out on the people nearest and dearest to me (…)’
J: ‘I’m sure that makes everything a lot more complicated.’
I: ‘Yes, a lot more difficult so I shouldn’t, should rather try and be calm (mhmm) instead of shouting and (…)’
J: ‘But that’s hard sometimes.’
I: ‘It is hard sometimes but I’m getting there (…)’
J: ‘(…) Sorry I just think we’ve gone through everything quite quickly (…) is there anything that you’d like to add?’
I: ‘No, nothing at the moment, I’m just grateful for people that reach out to us (mm) that are there so that we’re not alone because that’s how I feel (…) alone, I might have that support group but I still feel alone, still feel that (…) why me, why do I have to get through this (very emotional, she starts crying) (oh no, don’t worry) (…) We love James (ya) but we had so many dreams and aspirations for him and now we’ve got to have different dreams, different aspirations for him, different different life than Catherine for instance (mm) I feel guilty that she is perfect, nothing wrong with her and look at James, why what does things like this happen to us (…) (mm) we’ll never know (…)’
J: ‘Are you religious at all?’
I: ‘Yes very, I’m very involved in my church and (..) I’ve asked questions but I’m still waiting for answers (mm) some answers have been, some questions have been answered but there’s just a few questions that we’re still waiting to hear the answer for.’
J: ‘Like what kinds of questions?’
I: ‘Um (…) research, would there be any, could they do any research to find out what caused what causes autism (ya) why is there such a thing as autism, why are the numbers so high it’s and you read books and eventually you get to a certain page in the book and you just close the book and you put it away because you don’t want to read anymore, it gets you more anxious, more upset (mm) more cross that you could’ve maybe prevented it, what went wrong (…).’
The first level of analysis concerns the discursive positions that are taken up and resisted in the text. We are interested in how discourses define and limit what can and cannot be said, not only because these are
In this extract, we see Irene draw on a medical discourse, prominent throughout her interview, firstly in her listing of tests and specialists and impairments associated with James (l. 7–10), and secondly in her appeal to research to answer questions and provide expertise (l. 37–39). This medical discourse constructs James as an ill patient with various parts of himself that are dysfunctional (his eyes, his mind) requiring treatment by experts. This medical discourse is fed into by a discourse of perfection which is drawn on to construct her daughter as a non-disabled child in contrast to James (l. 29–30). The effect is a smoothing over of the struggles and difficulties of non-disabled children such that what is difficult and hard belongs entirely and fully with disabled children like James contributing to a stereotyped, one-dimensional view of disabled subjectivity. One could argue from this perspective that Irene’s feelings of guilt (l. 29) are constructions produced by the effect of these two discourses, which suggest that something
A discourse of loss is prominent in the text constructing Irene as giving up the position of being a mother with ‘dreams and aspirations’ (l. 28) for her son, taking up a position of difference (l. 28–29). Her description of having ‘had so much dreams and aspirations for him’ (l. 27–28) construct herself as being duped into a sense of normality, only to have it taken from her and replaced with difference. The narrated experience here is one of loss that is built on an ideology of the knowledgeable or knowing mother particularly prevalent in contemporary society where parenting books and classes abound. Against this particularly oppressive mothering ideology (see Ryan & Runswick-Cole
The above discursive reading points to the work that a social model of disability is called on to do – to challenge the location of disability in the individual, as well as the construction of disability as quite separate from the non-disabled experience. However, it is important not only to pay attention to how the role of disabling society is disallowed through such talk but also to how it is disavowed – it is not just absent, rather its presence is actively resisted. From this perspective, we see how Irene has an ‘understanding boss’ (l. 5) and that the difficulty she finds herself in (located in personal stress) is not because of these bosses who are parents themselves but in the perfectly reasonable position that receptionists cannot take time off work (l. 4). The insidious way in which ‘dependency work’ (Kittay
We now move to the second tier of analysis in which we move to understand Irene’s emotional investments in the construction of ‘not knowing’ specifically. In doing so, we draw attention away from socially shared discourses to a thinking through the emotional pay offs or the conscious and unconscious ‘reasons’ for their employment in order to not lose sight of Irene, a particular mother of a particular disabled child. In the extract above, Irene describes the ambivalence of wanting to know the cause of autism, of ‘waiting’ (l. 34) to ‘hear the answer’ (l. 35) and also not wanting to know the cause ‘you just close the book and you put it away’ (l. 40). This could be read symbolically as a defensive denial of her own sense of guilt in relation to James. We might understand that Irene, while frustrated with not knowing, is also at the same time invested in not knowing because she does not want to really know or face her own sense of being responsible (earlier in the interview she makes reference to only going to the doctor when she was 6 months pregnant). Employing the concept of mentalizstion, we might argue that Irene’s stance above represents an anti-mentalising stance. She does not want to know her own mind, which already is certain of her own culpability. The problem with this reading is that it psychologises Irene, the analysis itself contributes to the individualising medical and moral discourse that the discursive reading was so critical of. Rather than employing a mentalising or non-mentalising capacity internally located in Irene, we want to argue that specific affective processes enable Irene’s investment in this position of not knowing, in this anti-mentalising stance and that these affective processes do not belong to Irene but are rooted in this particular intersubjective exchange (‘here and now’) and the particular socio-history context (‘then and there’) in which she finds herself.
In order to do this, we turn to the symbolic, emotional and enactive representations specific to the particular interpersonal encounter of the research interview; we locate the text in its
This interpretation of the ‘here and now’ is underscored by a further interpersonal process, which sees Jessie introduce religion into the conversation (l. 32). On the one hand, this could be read as Jessie introducing a stereotypical view of mothers of disabled children as saints (James
Drawing attention to these processes occurring in and around Jessie and Irene is not meant to berate Jessie for her prejudice but rather to point to the common ways in which the emotional work we engage in to understand and empathise, given the anxiety-provoking nature of this work, can in effect restrain our empathic ability. From this perspective, we are arguing that Jessie is holding Irene in mind in a particular way: as someone who is deserving of pity (needs godly help) and/or as a ‘saint’; she is not curious about who she is but seems to already have pinned her down from outside. Importantly, this can be understood as not necessarily only belonging to Jessie but rather as reflecting an unconscious historical group identity of ableism (‘there and then’), which represents a fantasy of mastery, completeness and perfection that is so dependent on the projection of loss onto others (Watermeyer
The principle of mentalising begets mentalising is here worked out in the negative; this reading draws attention to Jessie as a bystander (outside of Irene and James’ relationship in which we might interpret her as adopting an anti-mentalising stance) but nevertheless actively fuelling the way in which Irene is not able to hold James in mind through her inability to attend to her own mind and that of Irene’s with a quality of openness. This interpretation resists placing the emotional investment in the discourse of ‘not knowing’ within Irene’s psyche; rather, the analysis seeks to understand investments as always already belonging in, around, between and outside Irene. This draws attention to the dynamic and shifting nature of Irene’s subjectivity, to her capacity to mentalise potentially waxing and waning in relation to the container, which Bion (
The final tier of analysis is to think about what the reading thus far does – what does it produce – and also by what the analysis is constrained. This final tier tries again to capture the analytic emphasis on understanding and then disrupting. With respect to how it moves our understanding along, the above reading challenges notions described by James (
However, perhaps the analysis is constrained by its use of mentalisation in a conservative pull that we need to be mindful of, a pull that might suggest that Jessie could have conducted the interview ‘better’. Specifically, we want to argue that it is important to recognise the inevitability of Jessie’s position in the encounter above. This inevitability of the researcher’s position seems to be unacknowledged in many of the mentalisation interventions aimed at supporting mothers of infants, both non-disabled and disabled, to mentalise (e.g. Sadler, Slade & Mayes
The reading above draws attention to discourses that position Irene and her children in particular ways while also pointing to investments in these discourses such that these discourses are not purely social but play affective functions. Significantly, our reading places these affective functions between and around Irene and the interviewer; they move through these spaces in ways that are both revealing and resistive to being known. We use multiple lenses to read the text, seeking to understand what is going on from within each lens (discursive/social, interpersonal, intrapsychic), while also seeking to disrupt this understanding as we take up the position of a different lens. The concept of mentalisation is employed throughout in different ways – always seeking to both understand and hold onto the impossibility of doing so.
While this study has chiefly been concerned with conceptualising a psychosocial conceptualisation of subjectivity that employs discursive psychology alongside contemporary attachment theory and putting this to work methodologically, this study has also given voice to Irene in a particular context. There is a concern that retelling difficult stories such as that of Irene plays into a voyeuristic interest in tragic stories of disability (Goodley & Runswick-Cole
The authors are grateful to Leslie Swartz, Brian Watermeyer and Judith McKenzie for their comments on an oral presentation of this work for the Disability Studies Programme at the University of Cape Town. Travel to Cape Town to present the paper was made possible by the National Research Foundation (NRF). Opinions expressed and conclusions arrived at are those of the authors and are not necessarily attributed to the NRF.
The authors declare that they have no financial or personal relationships which may have inappropriately influenced them in writing this article.
L.S.Y. conceptualised and designed the research which the article draws upon J.B. executed the research, which included conducting the research interview presented in this work along with other interviews which were written up by her in an unpublished research report as a requirement for her honours degree in 2014 at Rhodes University. L.S.Y. took the lead in writing this article.