When one falls, the other has to pick up the rest, because it is only your family and God… the government gives you nothing… so we all have to work, maybe to buy him (disabled person) a pill or two sometimes, maybe just for the pain, to buy some food… all we can afford (Cristian, son).
These shifts in family labour patterns appeared to be more common in contexts where families lived and worked together in reasonable proximity. However, those families with a member residing and working in the US (often irregularly) noted how disability and its financial demands led to stepping up of pressure on the migrant family member to work harder and send some money, intensifying dependence on the small remittances sent. These, as they emphasised, could not always be sustained, and were growing more irregular in the face of intensified border policies, fragmented work, and the hunt for irregular migrants in the US.
We have a son working in construction in the US, he has his own family, sometimes sends us some money… since his father had his accident, we are always asking for more money to help us eat and he can’t… he has mouths to feed, and work is becoming more difficult for him… he wants to do more, but… he is scared they will catch him too, and that will ruin us all (Manuela, mother).
I tell my father and mother I have to go to the US because there is nothing here, no work, no money… nothing… just misery… maybe we all die soon… the coyote tells us it is easier when you are young or a child… maybe the gringos let you stay like that… but we cannot save the money for me to go, and no one will lend us because we already borrowed too much money and they are after us.
The most dramatic changes in work patterns, as the evidence from the study suggests, though, occurred among family members who remained in the village and were in direct contact with and cared for the disabled person, especially women. Three key family labouring dynamics were notable in response to disability:
1. Some family members were forced to withdraw from work, reduce their hours, or faced problems in entering paid productive work, largely on account of caregiving;
2. Existing labourers were pushed to labour harder and for longer hours;
3. Others were prematurely cast into the exploitative world of paid labour, including women and children.
I expand on each of these below, focusing in particular on the impacts on women.
3.3.1. Caregiving, Fissures in Labouring and the Gender Effect
It was clearly apparent that caregiving had serious impacts on labouring patterns, in particular for women and girls already struggling to juggle their multiple tasks, specifically through the imposition of serious time constraints for productive labour, in particular remunerated work. In rural Guatemala, just like many other places, caregiving (of children, those who are sick and/or disabled) is frequently provided by women (see [33
]). The bulk of this work is unpaid. Opportunities for paid work are scarce in rural areas, also propelled by a lack of opportunities alongside well documented gender-based discrimination and machismo. Overall, women work longer hours, have less time for paid work on account of caregiving and, when they do, are more often than not paid less, intensifying inequity and power differentials within the household [35
Women participants in the study documented a number of responses/changes in the area of labouring following the onset of disability in the family and notably the caregiving duties that followed. These included reduction in paid labour and, on occasion, being forced to pull out altogether, translating into loss of income for them and for the household. This sustains literature highlighting the burden of care vis-a-vis time for productive labour [37
]. It also demonstrates how the costs of disability, and indeed an analysis of the disability and poverty relationship, need to factor in so-called opportunity costs (alongside direct and indirect costs—see above), defined as the value of the resource given up (in this case labour) when put in its best alternative use [7
]. These are substantial when paired with the opportunity costs of the lost labour of the disabled person. Fragmented labouring for some of these women was also compounded by their own ill health, limiting their ability to engage in paid labour, such as housekeeping or childcare for marginally wealthier households, or temporal agricultural labour. The following extract from the wife of a disabled man maps out this scenario.
I need to wash him (disabled husband), feed him, take care of my grandchildren… I used to clean a house for a few cents, but I had to stop that too… and I do not have the strength to tend to the fields, because I have severe arthritis… I have time for nothing… God help us… (Marilena).
The findings suggest that the impacts on time and labour were more severe for those women providing care to a disabled family member requiring substantial and sustained care during the day (e.g., toileting and feeding), who had limited or no mobility and could no longer contribute any labour power, and when there were no other family members (especially daughters, sisters or women in the extended family) to support with these tasks. The key analytical point here is that labouring power and the capacity to earn an income by these women is impacted just when direct and indirect costs (notably health care of disabled member) are at their highest. Marcela, a single mother, explains the hardships that come with singlehandedly supporting her disabled daughter and taking care of her elderly mother.
We bleed money we do not have, we need more… she (daughter) needs me to move her, feed her, bathe her, and I have no help… only my mother who is 85, she is sick… I live in her house so I can’t say anything… the more money we need, the less I can work to earn something… stuck always here and no one to give me a break… I am falling ill myself.
While, for women previously engaged in labouring, disability often meant interruption in their paid labour, for some younger family members, in particular daughters, the need to provide care and attend to households tasks meant the inability to even start labouring, while deepening barriers in starting or continuing their education. This is clearly laid out in the following quote.
All I do is clean the house, help my father to the toilet, feed him, take care of my brothers… school is something I was forced to stop… my father cries about it, but he tells me ‘my daughter I can no longer send you to school… you now have to take care of us’ (Anabela, daughter).
Findings highlight, though, how not all female remunerated labour was given up. Instead, responses were complex and dynamic, changing as opportunities (notably small casual paid work) and setbacks (e.g., crop failure, food shortages and price hikes) cropped up. These included women substituting labour, worked around economic (earning potential) among other factors. This demonstrates the agency of the poor and also ability to strategise when afforded some or other opportunity (see also [39
]). Daughters, for example, on occasion assumed caregiving duties (of the disabled family member and younger siblings) alongside household tasks, when this enabled mothers to engage in paid labour or micro-trade, for example to sell agricultural produce on the market. This meant the shift of the mother and wife into the household head, while contemporaneously positioning and entrapping daughters in the caregiver role.
My life was effectively stopped to take care of my father while my mother tries to go earn some money selling some onions and garlic on Sunday at the market in town… she has to travel for hours and back… and I don’t have time to go to school, or maybe one day find a man and get married… everything stopped… so like my mother I am now (Ana, daughter).
The impacts of caregiving and those of fragmented or interrupted labouring had serious effects and constraints, not only on the financial inflows and assets of women, but also on their time. These included time and opportunities for socialising and to build some or other social capital, affecting the benefits often reaped through reciprocity, including the sharing of food, small loans, connections for paid work and work experience, support in times of crises, and help with child care and during illness among others. Daughters commented how being cast into caregiving, interrupted education (and often to never be picked up again) and importantly shrunk their chances of finding a partner and eventually having their own families, because they were confined to the house—out of sight, out of mind. Marriage in such contexts, as participants confirmed, is a critical source of future economic support as well as social and cultural valuation for many rural women, and hence a core part of personhood. The following quote documents these constraints on time, socialisation and impacts on marriage potential for these daughters.
My dream is to find a husband, have children… a family… someone who will support me… to be a normal woman here, but I am not out, only washing, bathing, feeding (disabled father), so I do not know who will take care of me… and locked up… like I do not exist, just a carer (Yancy, daughter).
Caregiving and removal from work, often reinforce existing gender roles, expectations and possibly discrimination when this exists, while negatively impinging on women’s bargaining power within the household, especially when much of this power may be bound to productivity and economic contribution to the household economy [40
]. Less access to money, as some of these mothers, wives and daughters insisted, on occasion meant lower status and say within the family, less ability to negotiate better terms for themselves, and a weaker fall-back position if and when problems cropped up.
If I don’t have money, it is less respect for me and what I contribute… and if I do not have any money to eat and take care of myself, what will happen to me, if I get sick or something else like this, or I end up on my own (Connie, daughter).
Overall, and reflecting back on these findings, the responsibilities shouldered by these women caregivers, confirms the emphasis in global North disability literature on the love and care of family (see [42
]), but contemporaneously highlights how this caregiving, within these rural poverty contexts, is not without consequences for those providing it. More precisely, it highlights the complexity of care across space, time and circumstances and its dynamic nature see (see also [46
]). Findings demonstrate how, for these women, the extreme rural poverty they live in and the virtual absence of formal safety nets and services, and lack or no social protection and limited rights (part and parcel of life in rural poverty), mean that the responsibilities they shoulder are concretely tough, without respite, and do have profound physical, social, economic, cultural and psychological implications. Psychoemotional dimensions documented in disability studies [47
] clearly extend to supporting family members too. The women in the study frequently mentioned anxiety and depression, withdrawal from social contact and spheres, less money, and less ability to cater for their own health care needs as a result of the care they provided and its ramifications. A number also reported severe ill health because caring for the disabled family member’s health needs left no financial assets or time to cater for their own. As a result, these women persistently framed disability and the care that came along with it as ‘a weight’ and an unforgiving burden in these fragile families, because they came at a cost to their chances, opportunities and well-being. But they had no choice: not providing this care not only had serious implications for survival of the disabled person, but also went against social and familial expectations. This echoes Fryers’ [48
] (p. 356) observation that ‘how oppressive caring is felt to be, must vary with the relationship to the person cared for, the opportunities for alternate lifestyles’ and ‘the culture’, and one would add, the economic, spatial, temporal and situational context. Elena, the daughter of a disabled mother neatly captures this.
This disability she (disabled mother) has is a weight I cannot handle… a major trouble for us… because I cannot handle it, I cannot have my own life, I have constant anxiety, fear for her, that she will just die… and fear for us all. I wish this problem never came to hit us… I was in school before, I wanted to get married. Instead, now I am locked at home 24 hours, so that my father and brothers can work.
3.3.2. Working Harder: Desperate Attempts at Making Ends Meet
While some family members were forced to pull out of work or cut down on labour input, those who continued to work following the onset of impairment within the family were too often forced to work harder. Similar patterns have been observed during or after other crises, including drought, floods, crop failure, and HIV among others (see for example [49
]). These responses were not necessarily either/or, and at times complemented each other over time, and as needs and demands unfolded and changed. As participants explained, labouring remained the pivotal concern because they had to: compensate for the lost income of the disabled person and that of the caregiver; try and maintain food production; help to cover some of the direct costs (notably health care for the disabled person and food costs); and support young dependents, especially small children too young to work. Shifts in labouring were reported by spouses, children and siblings who explained how the demands associated with disability meant they were now forced to work harder and for longer hours and were constantly searching for any paid casual work. The pressure to labour was overall more intense for those families with a higher number of dependents, and/or fewer labourers contributing economically and productively. Some, such as sons who had their own families, also explained how they had to tend to the disabled person’s (e.g., the father) plot of land, after or alongside farming their own land in the bid to maintain some or other crop production (exclusively for subsistence) or to minimise crop failure. They explained how this, on occasion, affected their own crop production and hence food output, impacting consumption and pushing up food expenses for their own immediate families. Consequently, these labour inputs on the disabled person’s plot were often erratic, and could not be sustained over time, leading the crop to wither and the land to eventually dry up.
I can barely farm my own plot, and the work I do is killing me, because my father doesn’t work, just spending on him, so I have to intervene… money, just money, and my family is starving too… I fear one of these days I will die working where I am… and then… his (father) field is now gone, because I couldn’t work that and mine (Oscar).
The pressure to work harder and longer, had various consequences, including stress and also heightened and prolonged exposure to perilous work and consequently risk of accidents, ill health and even impairment. Indeed, while poor rural people do not have much choice as to the work they do, the demands imposed by disability, reduce this choice even further, pushing family members to take up the first hazardous work that comes along, including seasonal migratory labour for months on end. Domingo, an 18-year-old, had taken off to work on a plantation many miles away from home to try and support the family after a stroke which left his father paralysed. His family were worried sick at the time of interviewing, explaining how accidents, brutal working conditions, and even violent crime and assault were common, stating that all they could wish for was for him to return safe and sound. Nevertheless, and while they tried to dissuade him from going, the family was already going hungry, and his decision, like that of other forced migrants, was propelled by the desperate need to survive despite all odds. His mother, Ermelinda, explains.
Many go and they have not returned, you can die because you do not have equipment, they can rob you and kill you when they pay you… you can fall or get hurt, and no one will take care of you… so far away… I pray to god every day he returns safe… he would say ‘we are dying here and if I do not go and do something, we will’.
3.3.3. Forced Inductions into Perilous Labour
Findings from the study suggest that while some are forced to work harder, other family members, in particular wives and children, are sometimes pushed into the world of paid labour for the first time. These inductions into poor labour are discussed in the following two subsections.
The narratives of partners and spouses, wives in particular, were fraught with dramatic changes following the loss or fragmentation in their husband’s labour input and contribution to the household economy. They recounted in detail how disability meant dramatic pressure to find paid work, wherever and whatever it was, especially work that was sufficiently close to the homestead to allow them to provide some or other care for the disabled family member, care for small children and attend to household tasks. Indigenous women in the mountain areas also explained how they were consistently pushed by the need to grow some of the subsistence food crop for consumption, and indeed many picked up the machetes and took to the fields to continue working the land previously tended by their husbands (unpaid). Overall, this demonstrates the substitutability of traditionally male and female work (see [50
]) during times of crises within contexts of dramatic market imperfections, dire unemployment, input constraints (e.g., water and agricultural inputs such as fertilizer), environmental factors (e.g., drought) and climate change, lack of financial assets (for consumption and/or investment), and overall poverty. In this study, and supporting other studies (see [51
]), this was particularly the case among rural indigenous families, highlighting a greater fluidity and less rigidity in gender roles than among non-indigenous people.
I had to take to the fields, to maybe save something, my husband’s suffering is mine, because he can’t do it anymore… I work with the machete, sometimes the neighbours help me… because if not, we do not eat… it didn’t rain, dryness, and we do not have enough water, so most of the crop will die again… it is desperate (Esmeralda).
These family members narrated how entry into the paid informal labour market, though, was far from smooth or harmless, often marred by exposure to its extreme negative forces, including abuse and exploitation, and critically, hazardous and unsafe working conditions, and where accidents are common, e.g., exposure to harmful chemicals and falls. They recounted how employers rarely provide any protective equipment (e.g., in construction or in farming) and how informal labouring means they have no obligations towards workers when something happens (e.g., compensation in the case of accidents). However, what marks and distinguishes the situation of these families as particular is that their dire financial situation and critical need to labour translates into a form of slavery or bonded labour when employers (e.g., landowners) know how desperate their situation is, the knowledge that they will work for anything, and how they in turn capitalise on their misery as a default response. Participants told how providers of temporal work knew they were in no position to negotiate in the face of impending hunger, debt and severe impoverishment, initiating a cycle of seriously abusive and even violent work.
I work as a muchacha (maid/housekeeper) for this wealthy family from the city, I wash, take care of the house, take care of their children, cook, buy, everything… they just relax and the wife just shouts at me, accuses me of doing things that aren’t true… she said I stole money and she hit me… she knows my husband is in a wheelchair, and instead of helping me, she treats me like a dog and pays me almost nothing, saying my husband is useless (Mirna).
While the situation offered some leverage for these women within their households, the chances of shifting broader gender-based discrimination and machismo, though, it appeared, remained small. This is because the notion of what a ‘real’ man should be and do is embraced by and frequently also maintained by women, highlighted on occasion in participants’ claims that their husband had stopped ‘being a man’, or was no longer ‘man enough’. As Stobbe [52
] succinctly notes, while machismo oppresses women, it is also women who reinforce this through their expectations of what a man should deliver. Furthermore, many women were in large part induced into work considered female, but on even more exploitative terms, while others (especially daughters) were trapped even further in the caregiving role, reinforcing existing female positions. Also, while women, especially those in agriculture, took on work considered traditionally male, men rarely performed tasks considered female, notably cleaning, cooking and child rearing.
From Child to Labourer
In this study, it was not only adults who saw working patterns shift. Indeed, the impoverishing impacts of disability and the struggle to keep afloat, it was clear, did not spare anyone. In these families, even children were quickly pushed into the world of labouring, marking ‘a premature entrance to burdens of adulthood, all without the… strengths… associated with adult status’ [53
]. Barely adolescents, these children were on occasion driven to find some or other remunerated work, not so much by their parents, but by bare necessity, including food shortages as supplies and money waned. Indeed, an inverse relationship seemed to exist whereby as the demands and costs of disability rise and shift fragile families towards destitution, the age at which children are forced to take up work appears to dramatically drop (in this study as young as 9). Conversations with these children in the presence of their families exposed an intense pressure to intervene, a decision they reiterated was their own, motivated by the desire and need to help their families. This drive was particularly intense when: the mother could no longer work, e.g., on account of ill health, or was not earning enough to cover the basic needs; the household had a high dependency ratio (infants or other ill members or ones with a disability); parents were no longer able to pay for education and these children had to pull out (on account of the draining of financial resources and loss of labour); the disabled person faced high direct costs of disability; and/or debts had been incurred and needed to be repaid.
My family is buried into the ground, hungry and my father is bent over with pain in his chair and my mother is getting sick. I cannot let them starve, so maybe I can get some medicine for both of them (Antonia, 14 years old).
The induction of children into work, though, is a decision that these families did not take lightly. It is important, though, to contextualise this situation. Child labour is customary in Guatemala, especially among the poor and extreme poor. Guatemala’s legal working age is as low as 14, but it is estimated that some 42% of working children are below this legal working age, especially in agricultural and rural areas, motivated by extreme poverty [54
]. This work is on occasion temporal, for example contributing some labour input at key stages of the agricultural cycle, meaning that children often go back to school. In this case, work is gradual and involves the sharing of tasks, work that is also meant to teach these children the skills to eventually have their own trade. The impoverishing urgency created by disability, the narratives confirm, though, accelerate this process, driving children into rough, hazardous and exploitative labour prematurely, with no preparedness, opening extraordinary channels for accidents, disease and impairments.
A child here helps the family, it is customary, but one should not have to see his son or daughter shouldering the weight of the family, scarred, bruised, working with the machete, not knowing whether he is going to make it back home every day… he is only 12, but he (son) says he is the man of the house, but he’s already gotten hurt..I fear next time it will be worse (Angela, mother).
While sons were often pushed to work in agriculture, daughters were induced into a range of productive activities (remunerated or not) alongside, or instead of caregiving, many in the home, such as food processing and its sale, but also outside, for example housekeeping for marginally wealthier families in return for a small (often exploitative) payment or selling food.
While there is substantial literature addressing child labour and linkages with education and other aspects (see [55
]), there is a gap in the literature connecting this labour (which may not always be forced or exploitative) with parental or familial disability. Longitudinal research is also needed to look at the connections with potential impairments among these same children, and how they feed back into and connect with the disability experience of the parent and the interactions with poverty for the disabled family.