I'M THINKING OF of a long weekend in Margaret River, of a heater for the lounge room. I'm thinking of a new bicycle for Ben. I'm thinking of a visit to my favourite bookshop, dinner and an evening at the theatre, a new pair of boots. I'm having these thoughts because I've just been given $600. Fantasising is what you do. But I'm thinking these things also as a way of drowning out that small but persistent discomfort that has been droning away in the background ever since I got the letter. It's from the Hon. Jenny Macklin (Minister for Families, Housing, Community Services and Indigenous Affairs) and the Hon. Joe Ludwig (Minister for Human Services).
Dear Ms Robertson
The Government recognises the important role and contribution you make as a carer. Carers perform a vital role in our community in caring for the aged and people with disabilities. As part of the Australian Government's 2008-09 Budget, eligible carers will be provided with a bonus payment. You are entitled to the 2008 one-off bonus payment of $600.
Why is it that I feel slightly soiled when I read this? Is it the clinical tone of the letter, the fact that it confirms what we all know anyhow: that individual families must look after their own, that taxpayers and governments don't ‘perform this vital role'? Perhaps the bonus is a kind of gift or reward, not because I'm doing a good job (who would know?) or because I've chosen to be a carer, but just because I'm an ‘eligible carer'. The term ‘bonus' was originally Stock Exchange slang. It means ‘a boon or gift over and above what is normally due' and ‘a premium for services rendered or expected'. But at times it has been used to mean a bribe. Perhaps that is the more appropriate usage – not a reward for good behaviour (that is, accepting the caring role), but a bribe to ensure that good behaviour continues.
What did I expect? That society might suddenly value caring for the disabled?
Perhaps my discomfort is because this letter codifies my status as a recipient of government funds and officially classifies me as ‘carer'? It's a strange thing to be described as a ‘carer' of my own son. He is nine years old. I am his mother. This shift from ‘mother' to ‘carer' makes me profoundly uneasy.
To use the term ‘carer' about the mother of a young child is to mark her out as different from other mothers. Not that she cares more or less for her child but rather that her role is not the seemingly simple and socially valued role of mothering, but a more complex and invisible role of providing lifelong care for a child who may never become independent. That the lifelong care is limited by the mother's life expectancy, not her child's, is another anomaly of the role.
‘Carer' is a recently coined word, probably first used in 1978 to describe a person whose paid or unpaid role was to care for the sick, aged or disabled. But it carries the weight of six centuries of use in English of the term ‘care' to not only describe ‘taking care' but also ‘to sorrow, mourn, lament' or ‘be troubled by' something. There is implicit in the term ‘carer' a sense of burden as well as love.
Does the term ‘carer' imply that there is something unnatural in the mother's relationship to her son, that because the normal developmental path of the child has been disrupted the relationship must be redefined? What we find most appealing about children – their vulnerable dependency on us – becomes problematic and disturbing in adults. So much so that we have given a name to people who provide daily assistance to vulnerable or dependent adults. They are no longer mother, father, spouse, son or daughter; they are ‘carer'. And the person they assist is no longer a son, daughter, spouse or parent; they are the ‘care recipient'. The relationship is constructed and defined as unequal – giver and recipient – in the way that the relationship between parent and non-disabled child is not, even though the same dynamic exists.
We know that our society valorises independence over dependence, non-disabled people over people with a disability. I wonder if a similar privileging is happening in the distinction between mother and carer? Mothers of children with a disability are often told, ‘You're doing a wonderful job,' and ‘I couldn't do it,' and ‘I really admire you'. Although people mean well, the somewhat patronising tone suggests they speak from a position of assumed superiority as well as from a deep-seated fear of disability. I often sense that the mother-carer of a disabled child, like the child, is seen by other mothers as damaged.
I have never used the term ‘carer' about myself, even though I have ticked that box on various government forms over the years. I'm a member of Carers Australia and support the political and educational work that carers' associations undertake. My ambivalence is about the term ‘carer' as an identity tag.
I am reminded here of Althusser's concept of interpellation or hailing. The individual is hailed and, in recognising herself as the one hailed, she is interpellated or slotted into a particular role. To be hailed is to be encouraged or coerced into thinking of oneself in a defined way. The individual becomes both an agent of ideology and subject to it. Diagnosed with autism, my son was thus hailed by medical practice – he became ‘boy with autism' rather than just ‘boy'. At the same time, I seem to have been hailed as ‘carer', and my response, of course, is to accept that identification. Althusser's argument is that the work of the ideological apparatuses of religion, medicine, education, law, culture and politics is to make a particular definition appear to be self-evident. An individual internalises certain values and meanings and the identity offered to her, while still believing she is making a free choice. We do what we are expected to do; we do what institutions require of us.
I suspect that individuals both accept and resist this identification. Identity is plural and changing – a process of becoming that shifts throughout our lives. When I experience that dissonance between my role as carer and my own sense of myself as mother, I am renegotiating my identity. I may not be able to renegotiate my role – how many carers are going to abandon their loved one at the local hospital or police station? – but I am reworking my sense of how that role confines and defines me.
OF COURSE, PARENT or carer, I'm still happy to have the $600. For the parent of a child with autism, this money represents four sessions with a clinical psychologist, or six sessions of occupational or speech therapy. Given that children my son's age usually need at least one hour per week each of psychology, speech and occupational therapy, this money won't last long in most families.
‘Is $600 a lot of money?' asks Ben.
‘Well, it's quite a lot,' I reply.
‘Enough to buy a house?'
‘Oh no, Ben. A house costs a lot more.'
‘How about a computer?' he suggests.
‘Well, maybe half a computer. That wouldn't be much use, would it?' I joke.
‘You could buy a lot of Thomas the Tank Engines with $600.'
‘Yes, you could,' I agree. In fact, we could probably buy around thirty of them, which would certainly make Ben happy.
‘Maybe we could buy a new one, then?'
‘Well, we have a lot already.' I'm still contemplating the bike and the heater but in reality I'm fairly sure our bonus will be spent on occupational therapy sessions to help Ben learn the skills to play with his peers instead of Thomas the Tank Engine.
‘But we don't have Lady or Mavis,' points out Ben, ‘and they are girl-engines. You'll like them.'
‘Oh, I see. Well, maybe we will get one more then.' I'm impressed by Ben's reasoning and persuasion skills. At least I don't have to pay for speech therapy anymore!
Once, not long ago, I was a successful consultant, earning a living wage. I was married. I had a level of autonomy and control over my life and some influence over my future and, in a small way, on state government policy as a result of my consultancy work.
My downshifting started when I moved in with an artist, a man rich in talent but not money. I left a nearly-new two-bedroom villa in a suburb by the sea in order to move into a rundown 1950s weatherboard house in an area full of state housing authority houses. In those days, mention of the suburb raised people's eyebrows. ‘Is it safe?' they would ask.
Is anywhere safe?
Over time, as I moved from mother to carer-who-doesn't-call-herself-a-carer, I downshifted yet again. The job went from full-time to very part-time, so that I could spend more time with my son. The renovation plans went out the door. The proposed family trip around Australia in a campervan was postponed indefinitely. Then the marriage disappeared on us. So here I am, a single mother, living in a yet-to-be-renovated sky-blue house with a garden that is untamed and a child who has most of my attention.
By the way, please don't imagine that my marriage broke up because our son is autistic. My son has a devoted father who is still very present in his life. Our marriage probably failed for all the usual reasons marriages fail. But perhaps we let it go slightly more easily than other people do because of our preoccupation with Ben. To my mind, a marriage break-up is a minor setback compared with finding out your son has a lifelong disability. I'm guessing that Robert would feel the same. Our marriage seemed so unimportant compared with what our son was experiencing that it withered away in a few years. That's part of the story anyway.
IN HER BOOK Ordinary Time (Beacon Press, 1993), Nancy Mairs says that one of the main consequences of experiencing disability as a result of her multiple sclerosis is ‘the loneliness felt by anybody whose life unfolds out of sync with general social patterns'. When a child's life unfolds out of sync, both parent and child can feel that loneliness. The space in which I work and live and socialise is very small because I have stopped doing things that are too difficult or demanding to do with Ben. Working full days, for example, means that someone else must drop Ben off to school and pick him up and take care of him for two or three hours before I get home from work. This is possible but it comes at a cost, resulting in much more anxiety and distress for Ben. Getting through the school day is hard enough; I don't want to make things more challenging for him. And then for me to find someone who can relate well to Ben and take care of him for a reasonable cost is much harder than it is for parents of typically developing children. I can't just enrol him in occasional care or long day care and expect everyone involved to cope.
Social events are proscribed in the same way. My first thoughts are whether Ben will manage in a particular environment. Anything noisy or crowded is out. Anything involving interaction with unknown children is out. Anything that demands more than a ten-minute attention span is out. Anything that involves sitting down is out. And so on. When we do go to a social event I spend all my time on the margins of the event with Ben, encouraging him to interact, helping him to feel safe, trying to prevent him from wanting to leave within half an hour of our arriving. We always do leave first, of course – usually just before the main event we have come to enjoy. We are like the Houdinis of social life – always escaping at the eleventh hour.
Ben's life is played out in a small space, too. He goes to the local school (and has a part-time aide there), but he can't manage any mainstream recreational activities. The children at school play with him sometimes but he never gets invited to birthday parties or out-of-school activities. After school, he unwinds at home with me or attends his therapy appointments. On the weekends, he spends time at home or with his father, going to a park or a swimming pool or playing with his Thomas the Tank Engines. Sometimes he sees other family members or friends who know how to relate to him. He's not unhappy – this is life as he knows it. In fact, one of the joys of parenting Ben is that he is generally a very happy child.
I'm not unhappy either, but I recognise that I have moved into a kind of ghetto. Just as I have shifted from mother to carer, so too have I moved from consumer to client, taxpayer to recipient, citizen to outsider. In truth, I am still a consumer (I buy things like everyone else) and I do still pay taxes (though not as much as I used to) but my point is that I don't feel like a citizen anymore. Because I get a carer's allowance of $50 per week and these vexed one-off bonuses, because I get letters from the government telling me that I have to inform them of any changes in my circumstances, because I am on the Centrelink database and have the feeling of being watched by government, my sense of being an autonomous, independent citizen with freedom of speech and action is unravelling. I am constantly negotiating with state institutions (hospitals, schools, government agencies) to receive the services for which Ben is eligible. Even though it is my son's right under law to receive assistance to ensure his inclusion in school, for example, I have to continually advocate for him to ensure this occurs. This is true for all the parents of children with disabilities I've met; it's not about me, or Ben, but the system. This feeling of exclusion from the main institutions of the state contributes to my sense of living as an outsider.
There is a concept in anthropology called liminality that disability scholar Robert Murphy used to describe the place of people with disabilities in Western society. In traditional societies, someone moves into liminal space as part of a rite of passage marking a transition from one socially valued role to another – for example, in puberty, during pregnancy or through illness. A rite of passage normally includes three stages: separation, liminality and reincorporation. For someone suffering an acute illness, the return home from hospital and successful convalescence mark their reincorporation or return to normal life and status. But for people with chronic illness or disability, that return may never happen. They may find themselves relegated to a kind of permanent liminality. They cannot be ‘cured' and reincorporated into society, so death may appear the only symbolic way to reintegrate them.
As a parent, I feel I have fallen into liminal space with Ben. The social apparatus of disability surrounds and engulfs the parent as much as the child. And the social results of the experience of disability can be significant. Unemployment, poverty, social isolation, scrutiny of your behaviour by professional experts, objectification by others – all of this happens to parents as well as to their disabled children.
I often experience the sense that Ben and I are separate from normal life, that we stand on the sidelines watching other people live normally while our lives move in slow motion. We do this literally at every sports day at school, when all the children except Ben participate in team sports and running races. When he does participate in group activities, as he does in the school dance class, I see that Ben is doing all the actions just five seconds after the other children and in a way that is slightly exaggerated, as if he is performing a parody. Sometimes I wonder whether my life has become a parody of motherhood, performing tasks for my child long after he would normally be able to do them himself.
Liminality, of course, may also be a place of transformation. In liminality, individuals can develop alternative social arrangements and question the status quo. We can do it as individuals – living our lives in ways that suit us, not others. But can we also do this as a group? If I were able to embrace my identity as ‘carer', could I be part of a group that challenges the notion that individual families and not taxpayers must be responsible for the majority of the caring work in our society? Could we identify the key roles that money and health play in granting individuals citizenship? Is it possible that Ben, at eighteen years of age, will consider himself citizen not outsider, consumer not client?
HOW OLD WILL I BE WHEN you die?' asks Ben. We have just driven past Fremantle Cemetery and I suppose this has triggered his question.
‘Well, we don't know, Ben. But I'm hoping to live for quite a while yet!'
‘If you die when you are eighty, I will be ... umm ... forty-four.'
‘That's right, yes,' I agree.
‘But, who will look after me when you die?'
‘Well, you might be able to look after yourself then. Forty-four is quite old.' Ben looks unconvinced but makes no comment.
The notion of death has changed for me. I can no longer contemplate that I may ever die. Like thousands of other mothers across this country, I have no faith that my son will be cared for without me. I look at the most vulnerable people in our society and I see that we fail them miserably. What is to be done?
‘Mum,' says Ben, ‘when you die, I'll make a plaque for you, like in the cemetery.'
‘That's nice. What will it say?'
‘Your name and the dates you were born and died and suchlike.'
‘Oh, yes. Anything else?' I ask. He thinks for a moment.
‘She was a good mother. Sadly missed. RIP. RIP means rest in peace,' Ben explains.
‘Great. I like that, Ben. And where will this plaque go, I wonder?'
‘Remember when we buried the hermit crabs?' asks Ben.
‘Yes, in the garden, wasn't it?'
‘Yes, I think you'll go with them, in the compost bin. And the plaque will go on top.'
I can't help laughing at this. It's the story of my life; here am I agonising about life and death while Ben cuts straight to the chase. I will end up in the compost bin eventually, however much this worries me. In the meantime, I'm touched that he intuitively grasps my attempt to be a good mother – not a fantastic mother or a super-mum or a special mother of a special child, but just a ‘good enough' mother.
‘Mum,' says Ben, ‘when we get home, we might play with the Thomas the Tank Engines.'
‘Good idea, Ben. I'd like to do that.'
There is always the Island of Sodor, where steamies are Really Useful, diesels are naughty and the Fat Controller is king.