Mothering for Life? Fractured Maternal Narratives, Care and Intellectual Disability

Mothering for Life? Fractured maternal narratives, care and intellectual disability CHRISSIE ROGERS Introduction My daughter, Sesha, will never walk the halls of academe, but when what happens within these halls has the potential to affect her, then I as an academic have an obligation to socialize the academe to accept my daughter. Such “care” may seem to be far from the daily care that her fully dependent body requires, and it may appear to be far-fetched to call this “care”, but it is part and parcel of that labor of love that we do as parents, especially parents of disabled children – more still in the case of those who are so disabled they cannot speak for themselves, a defining condition for those who are severely intellectually disabled.1 These sentiments from Eva Kittay could have come from any number of academics who have an adult intellectually disabled child, as many of us feel the need to understand care both philosophically and politically, largely because as she further points out, ‘we are the sorts of beings we are because we are cared for by other human beings’. 2 Obvious as this might seem in a mother’s journey not all human beings do care, which makes caring then not only practically difficult but socially problematic. For as a mother goes through her journey from the moment she realises she has a disabled child to thinking about lifelong caring responsibilities, her maternal competence, sense of self and understanding of what being a mother is all about are constantly re-evaluated. Moreover all of this is in the context of societal expectations of being a ‘good mother’, for life. 1 2 Kittay (2010: 398). Kittay (2010: 412). With this in mind therefore, before anything else it seems appropriate to introduce the reader to a snapshot of maternal narratives that situate the loss of the expected future, the emotional conflict and sheer angst about their mothering a disabled child. As Francis told me in an interview about her son, ‘a few years ago I thought, that’s it. You can keep him, I don’t want him, I just want some peace in my life’ largely because of the sheer trauma of her care work and emotional responses to the difficulties faced on a daily basis. Other mothers interviewed confirm these difficult moments, especially in regards to realising this type of mothering is lifelong and riddled with questions about love. Tina said, ‘we were in tears, [...] we both realised that this ... she wasn’t going to grow up, get married and have children and get a job in the way we always imagined’ and Tracy reflected there were time ‘when I’d sit there and I’d be like that gritting my teeth ... I hated him ... I loved him, but I hated him. I really detested him, the child he was, and what he did. I was in tears all the time’. The tears and pain in these narratives are simply a window into the early life of mothering an intellectually disabled adult. They capture just a glimpse of the emotional responses to discovering their child is impaired in some way and then living with the everyday difficulties. Thus, mothers in general often see their child as either moving towards independence, autonomy and separateness and are sometimes even seen as a development of her self. However, rearing a disabled child is in conflict with these expectations and emotional reactions. For example, a young adult with autistic spectrum disorder and unable to communicate cannot be a development of the mother’s self without her angst about what that self is. Or a child with an intellectual impairment may be unable to negotiate full independence, autonomy or separateness and therefore challenge the notion of being a mother in successfully mothering a fully independent young adult. It is clear that social perceptions and cultural ideals are heavily influenced by what it means to mother, for example, in the case of being on the margins as a working class mother, being restricted by notions of the ‘perfect’ baby, or being seduced by, or involved in ‘care work’ via social networking and blogging3. Moreover, in terms of mothering for life, it might also be useful to think about what it is to live within a so called caring, ‘civilised’ society4, as mothers are often left without support and sometimes contemplating suicide5. Quite often a mother might be blamed for the inappropriate behaviour of her son or be accused of being overprotective, or too liberal in her mothering her daughter. 6 What this chapter says then in response, through narratives and discussion, is that being a fully participating human in society means following certain cultural scripts, and mothering an intellectually disabled adult can be in conflict with these. A research process This chapter is drawn from my own experiences as a mother with a 25 year old daughter who is intellectually disabled, lives at home and will always be interdependent, as well as narratives from other mothers who have children identified with ‘special educational needs’ in England, UK.7 My insight and inspiration into this area of research was brought about by my own personal struggles, and as a feminist sociologist I found this area of research personally challenging but necessary work. It was, I believe, my ‘insider’ status that aided access to this particular population8. However, moving between an insider and outsider status was not easy. This is highlighted here in an excerpt from my own research journal as I ponder over being an academic researcher and mother when at a conference. 3 See, Gillies 2007, Landsman 2009, and Doucet and Mauthner 2012, respectively. Nussbaum 2004, 2006, Rogers forthcoming. 5 Rogers, 2012. 6 Rogers, 2009, 2010. 7 The research was funded by the Economic and Social Research Council. 8 See Rogers 2003, 2005, for more methodological detail. 4 Here I reflect, ‘as a member of the audience and a presenting delegate, I wait for the conference to begin. This particular one only happens every five years so is a big event for academics and education practitioners. The Inclusive and Supportive Education Conference is called ‘Inclusive Education: Celebrating Diversity?’ The opening ceremony begins and the room is filled with music and young people on the stage performing their interpretation of ‘inclusive education’. They weave in and out, their bodies supple and mobile, their voices clear and their story profound. They sing and chant ‘seize the day!’ at the end of punctuated exclamations of ‘individuality’, ‘sharing’, ‘creativity’, ‘SUCCESS!’ A lump in my throat and a tear attempts to escape. I pretend I have something in my eye and look around to see if I’m the only one emotionally provoked. Either I was, or like me, everyone else was able to disguise his or her emotionality. This, after all is a serious event. I recall my daughter being on stage desperately trying to remember a line, and me willing her to… whatever… she was great. Back in the audience I’m sad and angry. I know that the philosophical underpinning of inclusive education is in some way right, or is it I ponder… but anyway is it not a little premature to celebrate it, when we haven’t got there? I go back to my room and cry, for myself and for my daughter who will always be different and indeed difficult? I think about how the researcher and her self have merged: how I often go to conferences, as a sociologist and end up reflecting on my position as a mother’9. This type of personal painful reflection can raise complex challenges for the researcher/mother, yet open up valuable opportunities for new dialogues in enabling voices to be heard. For, as Oakley points out when discussing the self within the research process; it is not easy or necessary to be uninvolved. ‘It requires, further, that the mythology of ‘hygienic’ research with its accompanying mystification of the researcher and the researched as objective instruments of data production be replaced by the 9 Personal research note 2005. recognition that personal involvement is more than dangerous bias’10. This chapter takes an in-depth qualitative approach whereby narratives and other creative forms ground the work to highlight particular aspects of fractured lifelong maternal journeys11. Mothering and care ethics Mothering and intellectual disability are difficult areas to understand. Not least of all because of the gendered nature of parenting and the ethical, practical and financial implications for all concerned. From a feminist ethics position though, we can attempt to gain a nuanced understanding of caring and emotional labour for mothers with disabled children. Hooyman and Gonyea make an interesting distinction between ‘caring for’ and ‘caring about’ and suggest that ‘caring about implies affection and perhaps a sense of psychological responsibility, whereas caring for encompasses both the performance or supervision of concrete tasks and a sense of psychological responsibility’12. Moreover, a feminist ethics of care talks about the relationship between ‘natural’ and ‘ethical’ caring as it is often considered that mothering and a ‘mothers love’ is ‘natural’.13 Importantly, is it ethical to suggest that care work carried out with and for a disabled ‘child’ is done so out of necessity or obligation rather than love? For example a mother might ask, ‘who else will do it?’ Tracy one mother openly said ‘only a mother could actually put up with this [...] There are certain things in life where you haven’t got a choice...’. Care in this sense could be about human frailty and vulnerability: that of which intellectually disabled people, one could argue, are sometimes vulnerable and frail and therefore unable to support 10 Oakley, 1981: 58. Ethically for the purposes of anonymity, mothers or family members named in the text and quotations are pseudonyms. 12 See Hooyman and Gonyea 1999: 151, amongst others, for example, Held 2006, Lynch, Baker and Lyons 2009 and Hollway 2006. 13 Noddings 1995: 9. 11 themselves. Nevertheless, a mother is also frail and vulnerable at times during her maternal journey. I recall, as a lone mother at the time, taking my daughter out of school to home tutor her because I did not see any other option. I said in a diary written in 1999, I found working at home with [my daughter] incredibly hard because it compounded so many difficulties that I was having with regards to dealing with her problems. Sometimes I would take my frustrations out on her by shouting when she couldn’t grasp something and then felt really guilty. [...] It was far too emotional to deal with being a ‘teacher’ as well as a mother. I couldn’t walk away at the end of the day, if it had been a difficult session. Mothering an adult child then further compounds this inability to walk away. It is here that questions about how much one cares for and about their ‘child’ and what this care looks and feels like, both emotionally and practically can be asked. Moreover, who actually takes over from the mother, and who supports her when she has had enough? It has been found that mothers are often left wondering about their own future then and how their mothering persona spills out into their old age14. This, indeed, feeds into the notion that disability is a burden, to both the individual and society: straddling emotional, practical and financial spheres. With this in mind we need to think about the value of care in challenging relationships and provide a platform for understanding dependence and interdependence.15 The need to recognise interdependence will ultimately lead to a great many enabling and socially just practices16. Critically the feminist ethics literature makes care a problem in relation to, for example, the capacity to care, caring relations, gendered practice, labour and autonomy and 14 Mclaughlin et al. 2008 Bowlby et al. 2010 16 Lynch et al. 2009, McLaughlin et al. 2008, Nussbaum, 2006. 15 dependence17. But disability literature also, in a different way has been critical of interpretations of care and caring practices18. It is important to bear these in mind as there are tensions. Thinking about care in relation to mothering an adult child and ethics it is important to note that ‘recognizing that ethical caring requires an effort that is not needed in natural caring, does not commit us to a position that elevates ethical caring over natural caring’19, but it does suggest something different. Noddings implies that natural caring is something that is maternal but ethical care is outside of this relationship. This is based on a Kantian interpretation that ethical caring is done out of duty and not out of love, which is an interesting and important point to make, especially as not all maternal acts are based on what might be described as ‘natural’. This is in the sense that sometimes a mother loves her child, but hates him at the same time, yet feels obliged to care for him. It is ethical caring that strives to maintain the caring attitude. Interestingly in relation to this dilemma is the discussion between the ‘natural position’ and duty or obligation. A mother with a disabled adult child is obliged to care one could argue. The constant battle between ‘I must do something’ - caring for - and ‘something must be done’ - caring about - is critical in attempting to understand a complicated relationship. ‘I must’ carries with it obligation’ and ‘I must’ is very different to ‘I want’20. It could be argued that the narratives here are driven by ‘I must’, and occasionally ‘I want’. Some questions we might want to think about here while reading the narratives below are, a mother might ask, ‘do I love my son who has damaged the rest of our family’, or ‘do I care 17 Held 1995 2006, Hollway 2006. Hughes et al. 2005, Shakespeare 2006, Thomas 2007. 19 Noddings 1995: 10. 20 Noddings, 1995: 11. 18 for him’? ‘Yes I care’ she may well say, ‘but love? That is more difficult: I both love and hate him’. The love/hate dualism that can come with mothering a child or adult who behaves outside expected norms is apparent here and needs further exploration. Furthermore, in discussing mothering for life, whilst I am unable to go into too much of the gendered role due to the scope of this chapter, thinking about care and ethics, it is clear that there are gendered issues at work. Women for example, who do not express their emotions in response to grief of others or respond tenderly to a crying baby, are considered at best selfish. This is not the case with men21, but for some mothers in my research there are times when practical work (ethical caring?) takes over from emotional responses in caring for rather than caring about their child. Emotional responses of others – caring and uncaring moments during childhood. In thinking about the above, the narratives below highlight how unethical and uncaring professionals have been towards mothers with disabled children in their early fractured maternal journey. It is these early mothering experiences that then dramatically impact upon the mother’s life. Tracy talked to me about when Dean her disabled son, with hydrocephalus and intellectual impairments, and his twin brother (who is not disabled) went for their first day at school. Tracy recalled, So the first day at school came and they had their little uniforms on and I walked them up to the school [...] I came back to pick them up at the end of the day and, as I walked into the playground the teacher went (she beckoned) like to me and the headmistress went (the same) and I went over to her and she said ‘into my office please’. I thought they can’t have been naughty like that on the first day! She got me in her office; she said ‘take a seat’ - she’s curt – (and Tracy mimicked this) ‘I wasn’t 21 Friedman, 1995: 64. aware I was having a bloody retard in my school’ [...] I went mental, absolutely mental…[...] So I went mental and ended up with the police coming round [...] Me getting arrested [...] Actually what came before this first day at school for Tracy was months and years of one to one mothering with Dean, and all Tracy wanted was to see her twin boys off to school like any other mother. This was particularly poignant for Tracy not least of all because she did not think Dean would live, let alone walk through the school gates of a regular primary school with his twin brother. Her emotional mothering personae and care work was at a peak as she said, ‘I’d had this big build up to them going to school and I’d talked to them about it and I built up their enthusiasm about going and I’m as excited for them and I’d missed ‘em’. Tracy did get arrested for her actions, but laughed when she recalled this, ‘it was funny really. I mean when I told the police what had happened they said well I’d have hit her as well’. Tracy was released with a caution and the head teacher was encouraged to give a written and verbal apology and told to drop all charges against Tracy. Tracy and her boys did not go back. Problematically a mother who has a disabled child clearly often faces prejudice or even abuse. This example above highlights the complexity around dealing with the emotions and mothering a child in circumstances that are not easily defined as ‘care work’ in the public psyche. Tracy’s response was emotional and immediate, but in a different case with similar levels of prejudice emotional responses are invoked in both feeling hurt for her son, but also for herself as a mother. These deeply emotive responses to feeling abandoned, and disappointed by those around you, are revealed below in a poem written by Marlene. Marlene a mother with three sons, two of whom were identified as having additional learning needs, found herself a target of abuse from mothers in the playground due to one of her sons’ additional disruptive behaviour. This abuse came in the guise of exclusionary tactics and a group of mother’s petitioning to have Marlene’s ‘difficult’ son removed from the school permanently. To really capture what Marlene was telling me about her emotional response to this abuse and exclusion she gave me a poem she wrote. The playground I stand-alone in the playground, no one talks to me, I see the looks, and hear the whispers, she’s the mother of the little beast. The boy who can’t sit still in the classroom, The one that fools around, The child who torments the others, And throws himself to the ground. She must be a useless parent, no control or restraint, We’ll go and see the Headmistress, And make a formal complaint, We want the ‘looney’ expelled; you know the one we mean The boy who runs around the playground, as if driven by a machine. Who sends the other children flying, Cuts and bruises everywhere, get rid of the little menace, How you do it we don’t we don’t care. The brat whose been banned at lunchtime, The child who has no friends, The boy who’s never invited to parties And Christmas cards – not one was sent. The child who cries because he is lonely, And no friend invites him to tea The boy who believes he is useless, And not fit to be loved by me. The lad who is a loner, through no choice of his own Who struggles in the classroom, and is made to sit alone. The boy who lags behind, as hard as he may try, Who at the age of seven, can barely read or write. And so I continue to stand alone, no one talks to me, The mother of a little boy, whose been diagnosed with ADHD This poem speaks to us in a way that goes beyond any interview data can. It eloquently invites the reader into the emotional space where Marlene is ‘feeling with care’. This is about her experience and the emotional response she had with her son and how she too felt his pain via her maternal relationship. This is also suggested when she told me about his experience after he was excluded from regular school and was placed in a pupil referral unit. I imagine it’s quite lonely, he doesn’t go out with anyone, he doesn’t have anyone come round to play, he never gets invited anywhere, and to be honest the unit he’s in now from what he says about the boys there I don’t particularly fancy any of them coming round anyway. Loosely defined, the other mother’s in the playground (Marlene) and the head teacher in the school (Tracy) are inhumane and lack ethical care the in their response to disabled identities and disabled realities. Crucially in this argument emotional work was so overwhelming, that going back to Tracy’s narrative, she told me that, ‘there comes a time when your energy is so low that it effects your emotional state and you’d hear them crying in the night and you’d think oh no and you’d start crying yourself’. Care work from a political perspective suggests that support can be given, or not, via practical or financial means. However this work, this emotional labour discussed moves beyond the simple financial and practical into a more philosophical debate about ‘who cares’ and what does this mean for an individual’s every day experience that leaks into old age as the disabled child becomes a disabled adult. Emotional management – caring with difficult behaviour and beyond Several mothers in my research referred to difficult behaviour that did impact upon their caring and emotional response to their children as they got older. So as we move into young adulthood this ‘difficult’ behaviour included masturbation, self- induced vomiting, touching girls inappropriately and criminal damage. Sometimes this mothering veered between ‘duty of care’ or obligation and a love/hate response that questioned their maternal identity and desire to care. Tracy22 had different experiences with both her sons, who were differently disabled and she talked about how Dean’s behaviour towards girls younger than himself, and about Brad’s behaviour that was so verbally and physically violent that she feared for his or others’ lives and indeed his future, in a different way to the future she considered for Dean. Tracy told me about Dean, where, there were possible sexual undertones with the younger girls, but I think what his body was saying ‘hey I’ve got lots of hormones’ ... this was when he was about 14, 15 and ‘I’ve got lots of hormones here I’m a man’ but mentally he relates better to smaller children because of his mental age, and he made friends with a little girl ... and he used to play with her and tickle her and ... although nobody ever said that he’d touched her sexually ... because of his size, and looking like a full grown man (it was) inappropriate for him to be playing with a 7, 8 year old girl. This aspect of sexual behaviour too was introduced into the narrative by Lynne whose son was diagnosed with Asperger’s syndrome at the age of 14 but with a below average IQ. Indeed her sons’ actions and his intellectual capacity did call into question his future and her capacity to care as we see below when her son had been accused of touching girls in assembly and touching his half-sister inappropriately. 22 See Rogers, 2012. Lynne recalls that her son was temporarily excluded for difficult behaviour and said, ‘he was touching girls in assembly and, and he didn’t seem to be able to stop it’. She went on to tell me that ‘he’d done something sexual with his half sister’ and ‘social services got involved’. Lynne explained that the social worker was ‘very nice (pause) and she kept talking about boundaries and how some kids didn’t learn boundaries’. Interestingly Lynne was trying to disassociate herself, throughout our interview, with her sons’ ‘sexualised’ behaviour, as emotionally it seemed she could not come to terms with the fact that her emotional self was in a maternal relationship with her son who behaved in this way. This brings us back to this complicated relationship where a mother is obliged to care for her child when she does not always feel with love. Continuing this narrative of those children who behave outside of socially acceptable norms and then how difficult caring for a disruptive child can be, with Brad a whole host of events over a period of a few years happened involving both Tracy’s actual day to day mothering of her son and her emotional work. Graphically Tracy told me, ‘I’ve had neighbours knocking on my door saying ‘Brad’s hanging out the window’ [...] He used to get up in the middle of the night and I’d have to get up and have been out looking for him (pause) having to leave my other three children, because I was on my own (then)’. These mothering problems spilled out into how much care and support Tracy could expect from family, friends, social support and paid carers. She told me, I used to have a really good babysitter for the other three children [...] but once Brad got a little bit older she was sitting in the chair like that and he came up behind her and held a knife at her throat and said ‘I’m going to fucking kill you’ and she wouldn’t set foot inside the house again. ... he’s thrown knives at me, he’s thrown knives at his brothers ... at this point the social services were a complete waste of space. In thinking about who cares, Tracy told me on several occasions about how she would phone up for local support and told me ‘I said (to social services) so basically I’ve got to kick the shit out of my child before you do anything’? [...] I was in tears all the time’. Tracy was desperate for some respite from the difficulties that she faced and yet was met with resistance initially. Tracy simply, in the first instance, wanted and needed ‘time out’ 23. As she told me ‘I’d been to the doctors and I was on anti depressants. …A couple of times I thought about taking the lot of them and a big bottle of booze and just finishing it all… I’d had enough [...] everyday I got up I was scared of what the day would bring’. I got to the stage where I thought I was a completely lousy mother and they’d be better off without me anyway [...] I was getting to the stage where they would be better off without me. But I suppose it was them that kept me on an even keel so to speak. Hence we get to a point where mothering an intellectually disabled child has been tainted by a fractured journey. This is the foundation for her adult mothering care work. Concluding remarks Much of what has been discussed here has a ‘tragic’ element to it in thinking though the maternal journey in mothering an intellectually disabled adult, but this is largely due to the social circumstances and lack of ethical care from fellow human beings. 24 Caring professionals such as those in education and health often become involved in the lives of mothers with intellectually disabled children and yet many mothers experience this as interfering at best. Resilience and skills development are evident in narratives that talk about 23 24 McLaughlin et al. 2008; Read, 2000. Although I am not denying the everyday difficulties that are real regardless of social circumstances. extended care that question life itself. However once thoughts of survival, or not, in any immediate sense wanes an issue of potential lifelong care is called into question. This emotional life long care however is not always, and actually more often not the case, associated with practical care, but emotional labour. Of course there are indeed practical issues with lifelong care, but the idea of the future and the emotional responses to ‘what next?’ are crucial in mothering an adult ‘child’. ‘Who is going to care for my son or daughter when I can no longer do this?’ is a common question. Living with their adult ‘child’s’ disability and what that future holds is critical in ethical care. For, [w]hat does ‘care’ mean in contemporary society? How are caring relationships practised in different contexts? How do conceptions and experiences of care continue to both inform and become shaped by wider societal, political and theoretical ideas and institutions? What resources do individuals and collectives draw upon in order to care for, care with and care about themselves and others? 25 These questions above are critical in attempting to understand mothering adult intellectually disabled ‘children’, as ultimately care is both self- serving and other serving. Therefore, if care is ‘to be maintained, clearly, the one-caring must be maintained. A mother ‘must be strong, courageous and capable of joy’.26 For example, Noddings talks about caring for an elderly parent where she sees herself, perhaps, as caring lovingly. But perhaps this person is ‘cantankerous, ungrateful, rude and even dirty. She sees herself becoming impatient, grouchy, tired, and filled with self-pity. Ethical self does not exist partitioned off from the rest of the person’.27 This is certainly the case for mothers with intellectually disabled adult children, especially those with additional behavioural difficulties. This is a life long journey where mothers are at times frail and vulnerable and yet at other times strong and capable. We might therefore call for a socially just society that cares. Or we might call for, 25 Philip, Rogers and Weller, (2012: 1). Noddings, 1995: 26. 27 Noddings, 1995: 26-27. 26 a society that acknowledges its own humanity, and neither hides us from it nor it from us; a society of citizens who admit that they are needy and vulnerable, and who discard the grandiose demands for omnipotence and completeness that have been at the heart of so much human misery, both public and private28. It is here that we need to bring together philosophical, political and sociological research so as to understand a broad humane ethics of care within mothering work, for as Eva Kittay at the start of this chapter pointed out, we in the academe are in a position to do this social justice work. References Bowlby, S., McKie, L., Gregory, S. and Macpherson, I. 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