Thinking about care

We are a group of people who think about care. We are researchers, writers, activists, policy analysists, parents, partners, children, and friends.  We give and receive care every day. We are also cultural and institutional analysts who focus on the factors that affect people’s capacity and willingness to care for each other. We pay particularly close attention to social inequality, to work, consumption and insecurity, to dependency and need, and to the linkages between “private troubles and public issues.”

“The Help” Yesterday and today

There has been a war of words over “The Help” since the phenomenal success of both Kathryn Stockett’s book and the recent movie adaptation.  One argument has to do with how Hollywood (and white authors) portray Black women.  A second argument has to do with applicability of “the Help” to today’s domestic workers.  The argument goes like this:  “It’s a great story, but it’s about the civil rights era.  It has nothing to do with domestic work today.”  The other side argues that today’s nannies face many of the same challenges as Abilene and her friend Minnie.  One side argues that to make the connection between today’s domestic workers and those living in the Jim Crow South is an insult to the violence and degradation faced by African Americans after slavery. The other says that to ignore the similarities to today’s domestic workers is to deny the oppression going on under our noses.  Which side is correct?

Both are. Nothing in contemporary domestic work can compare to the caste system enforced by the threat of violence and permanent unemployment that reigned in US prior to the Great Migration and the Civil Rights Movement. The status of African American women as the ultimate “other” in American society made “colored woman” synonymous with “maid” and vice versa. Thus, the beautiful economy of Stockett’s title: “The Help” simultaneously captures what it meant to be a black woman in the South, and what it meant to be a domestic worker. Like those at the bottom rung of any caste society, the dirty work simultaneously defined both status and occupation.

But there is also a through-line to this story. Declared “obsolete” in the 1970s by eminent Sociologist Lewis Coser, domestic workers have not disappeared but rather, domestic work has proliferated as economic disparities have increased, and the 71% of mothers in the labor force seek relief from the double day of the first shift in the office and the second shift at home. Today’s domestic workers are overworked, underpaid, often unprotected by labor laws and made more vulnerable by immigration laws. However, there is no one group designated to fill the contemporary role of “domestic.” Rather, multiple groups of women, immigrant and native-born, fill increasingly specialized roles of hourly cleaner, mother’s helper, and nanny.

Black women in the south might spend a lifetime cooking, cleaning, and raising children for generations of the same white family.  In today’s era of competitive mothering, however, most employers are not content to have the same person who mops their floors raise their infants and toddlers. In my interviews for “Shadow Mothers,” I found that employers hired nannies based on “Ethnic Logics” – developmentally-specific criteria designed to match the right type of nanny with the age-specific needs of their children: a patient, older immigrant for infancy, an outgoing, younger au pair for the social-skill building years of toddlerhood, and perhaps someone with a degree in early childhood education for the crucial pre-school period. Rather than one all-purpose maid who stayed with a white family until her employer threw a tantrum, nannies now turn over based on children’s developmental needs. As one respondent who bounced between care for children and care for the elderly explained, “they either die on you or they go to pre-school.”

Employers have changed, too since the 1960s. The caricatures of status-conscious ladies of the “league” have been replaced by harried, working professionals. Their concerns have changed as well. The wife in the “companionate marriage” of the 1950s and 1960s concerned herself primarily with enhancing her husband’s status at work by being a hostess and by improving her family’s social status through engagement in civic and volunteer organizations. Mothering was an important, but lesser concern. Contemporary women, by contrast, are judged by the upward mobility of their children, not of their husbands. Evidence of “competitive mothering” is everywhere from Baby Einstein to enrichment classes for one-year-olds, to the long waiting lists for the best pre-schools. Demographer Susan Bianchi has shown that the at-home mothers of that golden age of the nuclear family actually spent less time with their children than do the working mothers of today.

Thus, in today’s domestic work relations, the stakes are higher in drawing the line between mother and not-mother. The white mothers in “The Help” express relief one moment at their children’s desperate clinging to the maid, and the next moment pitch a fit because the child misused the word ‘mommy.’ Among the nannies I interviewed, allowing a child to cross the boundary between “mother” and “not-mother” was often a firing offense. The employers in “The Help” were less threatened by children’s attachment to their maids because the caste line was unbreakable, and because mothers were not held so deeply accountable for how their children “turned out.” For the help of the 1950s and 1960s, the sacred, uncrossable barrier was the color line; for the today’s help it is the line the “mother/not-mother” barrier.

Book Review: Au Pair by Zuzana Burikova and Daniel Miller

Au Pair, by Zuzana Burikova and Daniel Miller, 2010, Polity Press
http://www.politybooks.com/book.asp?ref=9780745650111
Paperback, ISBN: 9780745650128,

Au Pair is one of the first books to analyze this unique institution of domestic labor. Au Pair focuses on the experiences of Slovak au pairs working for British families in London, in the mid-2000s, (around the time Slovakia became a member of the European Union). It was co-written by two anthropologists, a British man who has employed a number of au pairs to help care for his family, and a Slovakian woman who became interested in the number of her compatriots who decided to become au pairs in the UK. Using fieldwork, interviews, and some content analysis of media related to Slovak au pairs, the authors explore the au pair experience – how they decide to become au pairs, how they view themselves and are viewed by their host families, and the consequences of their decision.

Miller and Burikova studied specifically Slovak au pairs in London and its environs as they are probably the largest ethnic group of au pairs in the city, a shift from French or Scandinavian women who previously dominated the field. The research also took place at the time when Slovakia became part of the European Union, so that an original motivation for becoming an au pair – gaining a visa to the UK – was no longer valid.

The authors worked with fifty au pairs who represented eighty six host families (the numbers are not equivalent as the au pairs sometimes changed families. Based on their shared ethnicity and language, Burikova interviewed all of the au pairs, and spent most of her time with them, both socially and helping them with their domestic tasks. Miller interviewed many of the host families who employed the au pairs in Burikova’s group as well as others from his own network. Even though it is an ethnographic study, this book is written in a unique style, which is somewhat informal and with no academic references in the main text. Each chapter is written in a different style, featuring a combination of individual stories and analysis, which explore different aspects of the au pair experience. Beginning with the stories of four women and why they decided to become au pairs, Miller and Burikova then describe on the relationship between the au pairs and their host families (this chapter is titled “An Embarrassing Presence”) through a material cultural analysis, which focuses on the au pairs attitudes to and experiences with their rooms, food, and cleaning (cleaning seems to be a major part of the au pair’s job, more so than childcare.) Subsequent chapters describe the daily work of the au pair (with both the au pair’s and the host families’ perspectives), racist attitudes of the au pairs and the host families, the au pairs’ leisure activities, and their relationships with men. The final chapter evaluates the au pair experience through the lens of a rite de passage (rite of passage) and also sets forth recommendations by the authors of how to improve the au pair experience on both sides of the relationship. The final chapter of the book, the appendix, is a literature review devoted to academic studies of domestic labor.

According to the authors, au pairing started from a tradition in which middle-class German and English families sent their daughters to live with French and Swiss families to improve their French language skills. It is supposed to be a “pseudo-family arrangement in which the au pair is supposed to be incorporated within the household more as a member than as a labourer” (2). Most au pairs decided to leave Slovakia for work as au pairs in London due to issues with personal relationships (romantic or parental) or life decisions (deciding whether or not to continue on in a graduate program). Economics was a large factor in the decision, as au pairs can earn substantially more in the “pocket money” they are paid in London than in wages for a “regular job” in Slovakia.

Miller and Burikova found that, similar to the mother-employer and caregiver dyads that Macdonald studied, the au pairs and their host families often had completely diverging accounts of their relationship. Almost all of the au pairs felt that their employers exploited them, and made them work more than the 25 hours as specified by the law. Burikova’s observations confirmed this inequity. Yet most of the host families believed that they were very generous with their au pairs and treated them well. The host families (it is mostly mothers who are quoted) seemed to have little understanding that how they treated their au pair could affect how their children were treated by her. Miller and Burikova conclude that the parents are generally don’t believe that they are exploiting their au pairs and this helps them to not worry about how their children are being treated by them.
One of the most provocative chapters of the book, “Sort of English,” describes the prejudicial attitudes of both the au pairs and their host families. Many families think of “a cross between Heidi and Mary Poppins” (p.87) when they consider hiring an au pair. Similarly, most Slovak au pairs presume that their host family will be like the Banks family (of the Mary Poppins story) – white, Christian or secular, well-off, and urban. The reality, as the authors show, is very different for both sides and can lead to some difficult interactions. A little over a third of the host families fit the “Banks family” template. The rest were Jewish and a mix of South Asian, Black, Iranian, other European and American – these were the “sort of English” families.

In Shadow Mothers, Macdonald showed how the mother-employers of all background had stereotypes about caregivers based on their ethnicity. Miller and Burikova’s fieldwork reveals similar negative characterizations on both sides. The host families thought of Slovaks as “…part of a generic Eastern European lake which stretches without significant differentiation from Estonia to Macedonia, from which they fish for au pairs” (94). Host families typically described Slovaks as hard-working, conscientious, natural with children, yet also lacking ambition, from a peasant class, and not cultured or intellectual (despite the fact that a number were university graduates). Interviews and fieldwork among the au pairs revealed that they thought that “Asian and black families would be both dirty and lazy, and Jews would be mean and calculating” (88). More ominously, the researchers discovered that how the families and au pairs actually behaved had little impact on these stereotypes. Each side’s experiences were filtered through their racist beliefs.

A chapter on men is also a unique feature of the book. While au pairs are almost exclusively women, 10% of the au pairs in the study were male. Initially the male au pairs experienced suspicion from their host families and were viewed as very unusual. The few male au pairs who had successful placements were effusively admired: “… the host mothers felt as though they had discovered a hidden treasure in the world that had brought them untold blessings” (151), that is, someone living in their house that could help with moving large items, doing repairs, and gardening.

Similar to most paid domestic work, the au pair experience is not regulated in any way. Miller and Burikova are very critical of the lack of oversight and accountability by au pair agencies. After the au pairs and host families are matched (often with conflicting information about the other), au pairs are not informed about issues such as laws regarding working hours or how to resolve disputes with host families, and there is essentially no support for au pairs if they have problems. There is no organization or government agency which regulates the work and living conditions of au pairs. The authors conclude that the structure of the au pair institution, which is defined as temporary, informal, and based on “foreignness,” accounts for the mismatched expectations (and subsequent difficult relationships) of the au pairs and the host families.

This was one of the most unusual scholarly books I have read. While it was somewhat refreshing to read an academic book without footnotes, the lack of references to other scholars and theories of domestic labor was disconcerting. The authors explain their rationale for the book’s style by claiming that they wanted to the book to be a “good read, uncluttered with constant external referencing” (1). Yet there were times when I wanted a footnote or some sort of source when the authors were making a claim. While there are many quotes from the au pairs, the information from the host families is conveyed in a more offhand manner. For example, this piece of data was offered: “At dinner parties, Mrs. Christie’s friends could talk for hours about the behaviour of their au pairs…. “ . Does that mean that most of this information was gathered at dinner parties? The informal prose was also a bit jarring. Phrases such as “girlie time” (without quotes in the original text, describing the female world of au pairs), or, “It’s like – where do you go in Beddlingham?” inserted a too-casual style to a serious topic. There should be a way to write readable academic prose without sounding so laid-back.

One of the oddest features of this book is that even though it is devoted to caregivers, there is virtually no discussion of the au pairs’ relationships with the children of the host families. Even the cover of the book demonstrated this absence – it features a couch, a vacuum cleaner, and a pair of shoes, and nothing related to children or childcare. The few references to children are decidedly negative, such as this au pair’s view: “”She was starting to appreciate the old joke about au pairing being the best form of contraception. A few hours with the Christies’ children was enough for her to lose those sweet teenage illusions about babies and motherhood. As an au pair you were expected to give the care, but without the reward of a child’s love” (p.67).

Compared to Shadow Mothers, in which the caregivers were the more sympathetic figures, I found myself disliking many of the au pairs portrayed in this study. Whether it was their racism toward their host families, their focus on shopping and the minutiae of their friendships and romantic relationships, they seemed to reflect the worst stereotypes of vapid girls. I understand, as Miller and Burikova explain, that part of why the au pairs act the way they do is because they are strangers, isolated in a foreign country, saddled with unappreciated domestic duties. Yet their behavior and attitudes made me wonder how parents could actually feel comfortable with a caregiver who was untrained, had limited language skills, and living in their home!
Au Pair is another book about care giving that reinforces for me my discomfort with in-home childcare. Despite its conveniences, I am too private a person and to uncomfortable being a “domestic employer” to have someone I don’t know live in my house. Yet this view into the au pairs’ world is a valuable book for those interested in domestic work, especially from an international perspective.
au pair cover image

Book Review – Shadow Mothers: Nannies, Au Pairs, and the Micropolitics of Mothering

Shadow Mothers: Nannies, Au Pairs, and the Micropolitics of Mothering, by Cameron Lynne Macdonald. University of California Press, 2010. ISBN 978-0-520-26697-1.
http://www.ucpress.edu/book.php?isbn=9780520266971

By Susan Sapiro.

Shadow Mothers, by sociologist Cameron Lynne Macdonald (moderator of this blog), examines the complicated personal negotiations between employed mothers and the childcare providers who work in their homes. In this fascinating and sometimes heartbreaking study, Macdonald examines what it means to both mothers and childcare workers to be a “good mother” and what it means to outsource some of this role.

Macdonald’s study focused on the delegating of “motherwork” – the physical and emotional tasks involved in caring for children. Since a large part of motherwork are these emotional tasks – soothing, stimulating, forging strong bonds – outsourcing these tasks can be controversial and challenge “the fundamental understandings of motherhood” (10) and the idea of the self-sufficient nuclear family. Macdonald studied in-home childcare as it would demonstrate how mothers dealt with childcare services directly with the provider, as opposed to being mediated through a center and multiple caregivers. At home, a mother supposedly has more control over the quality of the care, and “how she selects and manages in-home care reflects what does and does not matter to her as a mother” (11).

The original research for Macdonald’s study took place at cultural moment when the American media was focused on social anxieties about women’s’ roles, women’s work outside the home, and childcare. The Zoe Baird and Kimba Wood scandals over undocumented immigrants they employed as nannies, the Louise Woodward case (the British au pair who was charged with the death of the baby in her care), and the resulting media frenzy displayed Americans’ ambivalence about employed mothers and non-maternal childcare.

One of the inspirations for Macdonald’s book comes from a personal caregiving experience. When she was 16, she was a summer babysitter/mother’s helper for a family. She had worked with the family for some time and had grown close to their children, especially the baby. One day, something happened that upset the baby and she reached for Macdonald for comfort, not her mother. Almost immediately, Macdonald was “frozen out” by the mother. Shortly after, the family paid her for the summer but let her go from the job. It wasn’t until many years later, as she started the research that became Shadow Mothers, that she understood the mother’s reaction and the complex emotions and relationships between mothers and their children’s caregivers.

The research is based on data that Macdonald collected in the late 1990s, based on interviews with 30 mothers who employed caregivers and 50 caregivers. Most of the mothers (called “mother-employers” in the book) were in high status professional jobs, had children under school age, and two thirds were white. The childcare providers were a mix of au pairs (some European), U.S. born nannies, and immigrant caregivers. They worked between 30-70 hours per week, and earned between $100-300 per week (live-in) and $80-$500 per week (live-out).

The book has four thematic sections: a) the cultural and structural restrictions that influence the mother-caregiver relationship; b) how the mother-employers try to solve the contradictions between the conflicting “ideal mother” and “ideal worker” ideologies in their lives; c) the caregivers’ perspectives on their employers’ mother and management strategies; and d) alternative and more egalitarian mother-caregiver interactions. Each chapter begins with a prelude, which presents observations and excerpts of interviews with a mother-employer and a caregiver, or a linked pair of mothers and the nannies they employ. These stories relate to the relevant theme of the chapter and give voice to the hopes and anxieties of two types of women, both of whom are caught between jobs that they are devoted to, and children they love.

Macdonald notes that with the increase in the number of women in the paid workforce, the cultural expectations around childrearing and mothering in particular (cf. the work of Sharon Hays and Judith Warner, among others) have become more rigid and extreme. Professional-managerial class women are highly influenced by the ideology of “intensive mothering,” the expectation that mothers are solely responsible for the social, emotional, educational, and ultimately professional development of their children. The professional mothers Macdonald interviewed were highly successful in male-dominant fields. Yet even after having children they were put in the impossible position of having to be completely career-focused. At the same time, the mother-employers held themselves to similarly high standards as mothers, insisting that they should be utterly child-focused. The women expressed the resulting tension from these competing expectations in both ambivalence about their careers, and in how they managed their relationships with their caregivers. The caregivers Macdonald interviewed were skilled workers who were frustrated that their jobs were seen by their employers, and society in general, as “unskilled,” “natural” family work. Macdonald relates a number of situations in which, because of the strong relational component of their work, the caregivers’ often seemed to place their young charges’ needs, and their own desire for recognition of their role, over their own financial needs.
Macdonald analyzes how the mother-employers chose a caregiver, a “shadow mother” to act in their place when they can’t be present. These choices often involved ethnic and/or national stereotypes (e.g. “nurturing“Caribbean women, white, “fresh-faced” Midwestern farm girls, too-worldly British au pairs). Once the mother-employers chose the nannies, they used different types of monitoring and management strategies, which Macdonald labels either “puppeteer” or “paranormal.” Some mother-employers were “puppeteer managers” who had detailed written schedules and definitive opinions on how caregivers should interact with their children in order to mimic the mother’s own communication and parenting style. Mothers who were “paranormal managers” felt that they had hired a caregiver who would intuitively act as the child’s mother would. This type of mother-employer didn’t consider their nannies’ unique relationship with their child, and they seemed to believe that that their caregivers were infinitely moldable, flexible, and ultimately, interchangeable. Mother-employers also revealed to Macdonald that in order to shore up their self-concepts as mothers and preserve their primary relationship with their children, they expected their trusted caregivers to “fade away” at the end of the workday, once the mothers returned home.

Not surprisingly, the paid caregivers often had strong reactions to their employers’ management strategies. Nannies also believe in a different version of “good motherhood” which was often critical of their empolyers’ lives and mothering techniques. In Macdonald’s interviews with nannies, they often yearned to be seen as a “third parent” in the family, a recognition the mother-employers were reluctant to give. In response, the caregivers used different strategies to either resist or succumb to their employers’ limits on their roles.

In the final section of the book, Macdonald describes a second phase of research that revealed a more positive and balanced (if not egalitarian) mother-employer/caregiver relationship. These “partnerships” most often occurred between caregivers employed by mothers who worked part-time or had flexible work arrangements and more equal childrearing responsibilities with their spouses. These mothers also specifically acknowledged how much the paid caregivers helped their families. In welcoming the influence of other adult caring figures into their children’s lives, they disputed the ideology of intensive mothering.

In the final chapter, Macdonald calls for campaigns to socially and economically re-value carework. She calls on carework advocates to describe both the skill and emotional care inherent in their work as worthy of fair pay and societal recognition. Macdonald also argues that class issues also need to be addressed in order to reduce the tension between middle-class mother-employers and their working-class nannies. Class transmission was the basis of most of the conflicts between the mother-employers and nannies. Mother-employers need to resist the ideology of “intensive motherhood”, the idea that they alone are responsible for their children’s emotional, social, and class-based cultural development. As long as upper middle-class mothers continue to hire working-class caregivers, the mothers will need to accept that their children will be influenced by the class-based values of their caregivers, not only of their families’.

I found Macdonald’s book enlightening and depressing at the same time. The book is unique in that it focuses on the experiences of both mothers and childcare workers and their linked relationships. Yet the gendered nature of its premise troubled me and reminded me how much further we have to go to de-gender carework. Nannies, au pairs, and other types of childcare workers are hired to replace mothers, not fathers. No one criticizes a “working father” for having someone who isn’t his children’s mother take care of them. It’s only employed mothers who are condemned and censured, and their children scrutinized for any negative effects of non-maternal (not non-parental) care. As a parent who has used center-based childcare, Shadow Mothers re-affirmed for me what I knew I would find emotionally difficult about in-home care, despite its conveniences. While it was sometimes painful to read what the caregivers thought about their mother-employers (especially when I realized that my children’s daycare providers might feel the same way), it’s made me more aware of my quick judgments of both sides of the relationship. When I hear my friends complain about their nannies, I now realize that they may be ambivalent about their roles as employers. When I see nannies chatting in the playground and reprimanding the children in their care, I remember that social support and recognition is essential for caregivers of young children.

I appreciated Macdonald’s observations of how the nannies interacted with the children in their care, and the small details she noticed, such as that virtually all of the families had no photographs displayed of their children with the caregivers. The only thing I found missing in this very detailed study is an ethnographic account of the interaction between mothers and caregivers. The voices of both “sides” come out strongly in the quotes from the interviews, but it would have added an even richer layer of nuance if Macdonald would have recorded her observations of how the mother-employers and caregivers related directly to each other and to the children. It would have obviously been a challenge to find a time that both women would be present and interacting, especially since when the mother-employers returned home from work, they wanted their caregivers to “disappear”. I wonder if some more observations would have helped with the delicate issue of conflicting accounts among mother-employers and caregivers, such as one mother-employer claiming that their nanny cooked and ate with the family, while the nanny stated that she always ate alone, and was never invited to eat with the family.

This book would be a welcome addition to courses on carework, mothering, the sociology of labor and sociology of gender. I would also recommend this book to anyone who is negotiating a relationship with a paid caregiver.

Caring within universities?

In a recent study published in Academe, my collaborators Jennifer Lundquist, Elissa Holmes, and Stephanie Agiomavritis and I discussed the difficulties women faculty have in reaching full professorship. While a higher proportion of women faculty earn tenure than twenty years ago, many women have not been moving up to full professorships after receiving tenure. This has been confirmed in studies of particular disciplines (as in the 2006 report of the Modern Language Association, Standing Still: The Associate Professor Survey), as well as in national studies of all disciplines such as Laura Perna’s analysis of National Study of Postsecondary Faculty.

Our study shows that women at our university take longer to be promoted, and that women are more likely to have taken on major leadership roles in the university and department as associate professors (three-quarters of women associates, compared with half of men associates). While men faculty (and perhaps their deans and chairs) tend to protect men’s research time from such work, women faculty have been more engaged in academic leadership – which is less valued and compensated. Such work may be viewed as “caring” for the university. Developing and maintaining undergraduate programs – at least at our research-intensive university – appears to be the most devalued leadership task, and one that may take faculty away from the research that helps them win promotion. Caring work – for undergraduates – seems to disadvantage women faculty the most in regards to promotion (men who served as undergraduate director did not experience the same effect on their time to promotion).

In our interviews with faculty, both men and women faculty expressed a preference for spending time on research, as well as frustration at how service is distributed. Caring about the department, university, students, etc. – simply leads to more work, and less likelihood of promotion – creating a whole class of faculty who resent their colleagues and feel burned out.  Yet, these effects are particularly gendered, with women more likely to be investing in academic leadership at lower ranks. Indeed, based on a survey of work-time we did, we find that associate women spend much more time on service than men – with associate men spending much more time on research than women. It’s no surprise, then, that women are moving more slowly toward promotion.

How do we change these processes? First, we ensure that “carework” in the form of academic leadership is counted, valued, and recognized by colleagues and upper administrators in regard to merit, tenure, and promotion. At the same time, deans and department chairs need to ensure that all faculty pull their weight, making sure that women do not disportionately carry their departments’ service burdens. Care should count in any setting.

Parents as Safety Nets and Scaffolds for Young Adults

Contrary to popular anxieties about slacker young adults who refuse to grow up, or indulgent helicopter parents who stifle their adult children’s development by continuing to support them, my colleagues and I have found that parental assistance in early adulthood aims to promote progress toward autonomy and self-reliance.

The fact that young people depend upon their parents well beyond the age when most people from earlier generations had already started families and had dependable jobs has triggered a great deal of public anxiety over whether these trends signal young adult immaturity and stunted development. Yet today, the road to adulthood is much longer and more arduous than it was thirty years ago. In the mid-twentieth century, young adults could reasonably expect to find work that would pay enough to provide for themselves and their families shortly after finishing their education, often times directly after high school. Today this is no longer the case. Stable, well-paying jobs for high school graduates are rare, and young adults often require extended education or credentials in order to land a job that will provide an income and benefits to provide a decent life, let alone that will provide for partners and children. As young adults take longer to establish careers and set up independent households in more challenging and unstable job and housing markets, parents have stepped in to help support.

But are parents enabling their young adult children to delay growing up by supporting irresponsible lifestyles, such as passing days playing video games in the basement or evenings out at expensive trendy restaurants and bars that they really can’t afford? Or are parents targeting their help to support young people as they build skills, credentials and experience that will make them more marketable in the long run, even if it mean foregoing salaries in the short term.  Or are parents helping out in times of crisis, so their kids don’t fall too far behind when they encounter a major bump in the road?

Together with colleagues Minzee Kim, Mayumi Uno, Jeylan Mortimer, and Kirsten O’Brien, we looked at survey data from 712 adults ages 24 to 32 from the Youth Development Study to understand what circumstances led to parental housing or financial support. Although almost half of the respondents received financial or housing help in their mid-20s, only 10% to 15% received such assistance in their early 30s. The likelihood of receiving money for living expenses declined by 15% each year and living with parents declined 18% each year, suggesting that these adult dependents do eventually become independent.

Beyond the effects of age, we also found that young people were more likely to receive help from their parents if they were students or had encountered recent difficulties such as a job loss, a serious illness, or a divorce. Parental aid serves as ‘scaffolding’ to help young people who are working towards financial self-sufficiency and as ‘safety nets’ for those who have experienced a significant crisis or set back. In an economy that requires advanced education for good jobs, parents are more likely to aid their children when they are students. As the labor market offers fewer opportunities for stable, full-time, well-paid work for the young, parents often fill in temporarily when needed. The current economic conditions and labor market may warrant thiskind of help more than before and for longer into young adulthood

We also found that parental support tapers as young adult children take on adult roles such as earning higher incomes or forming families, regardless of their age. Forming intimate partnerships, in the forms of marriage and cohabitation, appears to signal to parents that their children have moved into adulthood and should now be on their own. Although marriage, partnership, and childbearing are largely understood as ‘choices’ today and not viewed as essential for achieving adult status, it does appear that parents and/or adult children themselves interpret forming a family of one’s own as an indicator that adult self-sufficiency is appropriate.

The findings provide evidence that families are adaptive and responsive to family members needs and troubles, and that parents are more likely to support adult children, even those who are older, to help them get through hard times and to help them attain independence. The instability and rapid pace of change during early adulthood may make young adulthood a particularly vulnerable period necessitating a safety net more frequently than other stages in life.

The full article can be read in the Journal of Marriage and Family.

Dementia from the Inside Out

Most depictions of dementia describe the impact of behavior and cognitive deficits from the outside – the observations of clinicians, family members, co-workers, and neighbors. It is rare to find a perspective from the inside out – the experience of the person with advanced dementia. A mystery novel is an unlikely place to look for such a portrayal, yet Walter Mosley’s recent novel, The Last Days of Ptolemy Grey creates that perspective convincingly.

A prolific writer, Mosley is best known for his Easy Rawlins mysteries, set in Los Angeles in the 1940s, and for his lively and authentic portrayal of African-American urban life. This book has Mosley’s characteristic earthy dialogue, colorful people, and plot twists. But the main character-cum-detective, Ptolemy Usher Grey, is no Easy Rawlins. He is 91 years old, suffering from dementia, and living in squalor. That is, until an unlikely caregiver, 17-year-old Robyn Small, literally gets him to clean up his act.

Mosley wrote this book after his 88-year-old mother Ella died of dementia. He was a long-distance caregiver for seven years. In an interview in the Wall Street Journal he said that one of the things he attempted to do in his book “is to show the narrative that exists inside [Ptolemy Grey’s] mind, to see those moments when someone is trying to tell you something and they still can’t do it . . .that struggle for articulation. That’s a very human struggle.”

As Mosley sees it, Ptolemy has a “place behind the door that kept many of his memories alive but mostly unavailable.” Shadows of the past keep intruding on the present, where he lives amid nonstop classical music and news on the radio, a dwindling supply of canned sardines, and fear of intruders.

The complicated plot, which involves past injustices, buried treasure, failed relationships, and violence, turns on the drive-by shooting of Ptolemy’s grandnephew Reggie, the only one of his large but uninvolved family who had helped him do some shopping and banking. At Reggie’s funeral Robyn, who has no family but has been taken in by Ptolemy’s grandniece, takes special care of Ptolemy. The family then sends her to assume Reggie’s role.

Robyn does much more than Reggie ever did, and her kind but firm presence gives Ptolemy the human connection and stability – the love – that is missing in his life. It also gives him a mission: find out who killed Reggie and take care of unfinished business before he dies.

In a Faustian twist, a physician offers Ptolemy a chance to recover his lost memory and lucidity. Dr. Ruben (henceforth called the Devil) is testing a new drug that he thinks will give Ptolemy a few months of clear-headedness but will kill him before he reaches 92. In a macabre version of informed consent, Dr. Ruben openly says the drug is dangerous and illegal in the United States but is being made in “a town in Southeast Asia where there are fewer laws governing research.” Over Robyn’s protests, Ptolemy chooses a few months of “getting his mind back” and signs a form giving his body to the doctor after he dies. No spoilers here: read the book to find out what happens.

The Last Days of Ptolemy Grey is a work that blends realism and fantasy. It is also a tribute to the powerful impact of a caregiver on the final chapter of a person’s life.

Taming Social Security?

While enjoying some spring training baseball this week, I’ve had interesting conversations with my fellow fans in the stands. A number of them are approaching retirement, and when they learn that I teach about health care and aging, the first thing they want to know is, “Will I have Social Security?”  This question weighs heavily on those approaching retirement, especially those whose IRAs plummeted in value at the hands of wall street brokers.  The women I speak to are especially concerned because, like it or not, most of them will outlive their husbands, not to mention their husbands’ pensions.

They are also following the budget fight in Washington, and ask me if it’s true that social security and Medicare benefits need to be cut. To be sure, the Social Security trust fund faces tough choices: we are approaching the social security tipping point – as the ratio of contributors to beneficiaries steadily heads downward.   Unless income and expenditures change, the Social Security fund is projected to be insolvent by 2037.  While not an immediate emergency, this is a situation that needs to be addressed thoughtfully in order to keep Social Security viable for generations to come.

But House Speaker John Boehner would have us believe that it is an emergency.  Despite the fact that over 75% of Americans in a recent poll oppose cuts to Social Security, he argues that they simply don’t understand the facts.  In a recent interview with the Wall Street Journal, he argues,  “People in Washington assume that Americans understand how big the problem is, but most Americans don’t have a clue… Once they understand how big the problem is, I think people will be more receptive to what the possible solutions may be.”

Rep. Boehner wants Americans to believe that we are trapped in a burning building and that cuts to our entitlement programs are the only buckets in our brigade.   If Americans only knew the facts, we would agree with him about raising the retirement age to 70, introducing means-testing for benefit recipients, and cutting cost-of-living increases.   Sadly, Rep.  Boehner and his colleagues seem to prefer frightening citizens by framing the problem as either accepting cuts or losing the program altogether. 

Rep. Boehner’s proposal presents a classic example of Hobson’s choice – a choice that is no choice at all.  There are other options – none of which seem to be on the bargaining table at the moment.  Recently Robert Reich did the math and found that raising the cap on the 7.5% social security income tax from $106,800 to $180,000 would solve the insolvency problem for the foreseeable future.  My seatmates at the baseball game didn’t even know that Social Security taxes HAD a cap.  When I explained it to them, they,  like two-thirds of Americans surveyed in a 2010 poll, argued that there should be NO cap, not just a raised cap.  Similarly, when people learn that terminating the Bush tax cuts to the top 2% of earners would also make Social Security solvent, most argue in favor of raising taxes.  However, most polls keep Americans “clueless” by framing any tax increase as affecting all taxpayers equally and not directly asking Americans what they think of taxing the rich.

Social Security is the most popular entitlement in America, even though it is largely based on regressive taxation.  As a percentage of total income, the bottom 50% of earners pay more into social security than do the top 50%.  The bottom 50% of earners also rely more heavily on Social Security, lacking significant retirement savings, pensions, or other investments. 

My conversations at the ballpark were enlightening, for me and for my fellow fans.  I learned that many people facing retirement don’t know how social security is funded and they are only aware of solutions to the fund’s insolvency that Speaker Boehner and his Republican friends offer.  When they hear about other solutions, like “clueless Americans” everywhere, they argue for raising or abolishing the cap, or for abolishing tax cuts for the rich?  Clueless?  No.  Misinformed.  Deliberately.

New Notions of Empathy?

Have you ever been commanded to “Put yourself in her shoes!”  Now you literally can.  Meet Agnes, which stands for The Age Gain Now Empathy System. A gadget of the Massachusetts Institute of Technology’s Agelab, Agnes is a bodysuit that has been developed by researchers for a wearer to experience the physical limitations of old(er) age.  Cords, bands, Styrofoam and tinted plastic transform what by all accounts looks like a mechanic’s jumpsuit, into the trappings of a “74 year old body” with limited mobility.  Reaching for a box of cereal in a grocery store becomes a feat when stretching an arm is restricted by a retractable cord.

Agnes is one of a number of technologies of MIT and other research centers promoting the study of the needs of aging baby boomers in the United States, 76 million of whom turned 65 in January.  Improving the “quality of life” of this demographic is a project of interest to a number of entities. Industry would like to design appealing products for this burgeoning market, and government would like to contain the soaring costs of healthcare for this typically high-user demographic.  Agelab and its peer centers are therefore hubs of development that profess a commitment to improving this next chapter of life, while also enhancing the market-value of that life.

I initially discovered Agelab in a February article in The New York Times.  It led me to the Agelab website where I perused the various techniques being developed to measure and respond to the capacities of older people.  It further linked me to the increasing coverage of Agelab in popular media, as the dapper, bowtie clad director, Joe Coughlin and his merry band of youthful suit-donners describe their gadgets on tv programs and in feature articles.

The issues are certainly timely, not only because of the pressing weight of an emergent demographic, but also in the gesture to technology’s potential for lifestyle innovation.

Let’s go back to Agnes. Putting aside the “in the year 2000” sense brought to mind by a souped-up dickie coverall and the REALLY interesting questions about enmeshed technological timescapes (such as, why choose iconic aesthetic workforce attire to represent the technological frontier?), what I want to focus on is the “e” in Agnes, the use of the term “empathy” to describe the experience of “gaining age” for a bodysuit wearer.

Empathy is a term to describe the relational capacity of one individual to access the state of being of another.   The transfer generally relies upon something forged between persons, or between person and object that stands in for a person (for example, a relation of empathy can occur when a person reading a newspaper of Japan’s earthquake feels pain for those pictured in the wreckage). It draws up, and upon emotions of the “empathized” and the “empathizer,” as well as in the matter between them.

In this light, Agnes is a departure of typical empathic rendering.  The suit serves as a substitute for a person afflicted with the syndromes of old age. Technology, in fact, fills in and reconstructs the figure who is rendered absent in these exercises.  Leaving her aside and choosing instead to simulate her experience of old age is curious because aging bodies are described as very much not absent in daily life, but in fact present in increasing numbers. What is absent, then, are older people in the research design, and in doing so, so too are their varied perspectives that accompany living when Agnes cannot be removed.   The researcher in the suit may walk slowly, but the real older person may labor to walk while also complaining of relentless aching joints, lost youth, or absent-minded folly.  How such responses bear upon movements are not necessarily obvious, and it seems to me that they would be critical to consider. Tapping into experiences of this kind would also evoke principles of empathy that are, ironically, unavailable in the Agnes model.

Now let’s explore how the Agnes technique takes empathy cultivation not as the relationship of oneself to another, but as parts of oneself in relation to other parts of oneself.  Like the suit itself, a researcher is guided to turn a part of herself “off,” and another now-enhanced part “on.”  This strategy is uniquely hitched to an idea of individuals as needing to create new experiences to access worlds that are assumed to be unfamiliar.  Is this the case?  Drawing from my own life, at the age of 27, I developed a disk bulge because I did not exercise, and sat, hunched, for hours at my computer writing graduate school essays.  When I was diagnosed, I thought, “God, I feel old.”  I had a picture of old age, and with it a foreboding anxiety that it was coming too soon.  Now, if I were to wear Agnes, I bet that I would play the role of the older person disconnected from my own archive of experiences that might be as or more powerful than the technological simulation.  In various articles, Dr. Coughlin says that baby boomers shy away from products that obviously marketed to them as “old.”   An accompanying statement might be, “I’m just like everyone else.”  Yet, Agnes may defy this statement by perpetuating difference, rather than building off of more important mercurial possibilities between people, and between points in a person’s own life that allow for the forging of connections.  These transfers are the potent stuff  embedded in dare I say more conventional technologies of empathy.

The final strangeness of this suit is that it dotes on the physical.  I  wonder, then, if the cultural constructs that have produced it back a new vision of the constitution of self.   Is a quality life achieved if the body’s needs are met on an individual basis? If we answer yes, this sums up popular thinking, it seems that we have found ourselves in a world in which ideal states of being boltser singular over social existences.  And yet: as our bodies in this world become depleted (and this is inevitable until that technology comes along), will we really be saddened if a shelf is out of range, or will we think about whether someone is with us to reach for our favorite cookies in our stead?

Effects of Wisconsin Budget ‘repair’ Bill on Direct Care Workers

Wisconsin’s Budget Repair Bill Threatens Health Care for Vulnerable Residents

This is a guest post by Mike Bachhuber, Executive Director of the Independent Living Council of Wisconsin.

Senate Bill 11, Wisconsin’s “Budget Repair Bill” gives government officials power to change health care available to the state’s low-income residents without public opportunity for input. The legislature has held this power since the beginning of the program.

State statutes provide most of the details for BadgerCare, the state’s federally-supported “medical assistance” program. Until now, these statutes have defined details such as: 

Which people needing care are eligible;  Types of care available to them;
 How care providers are paid and what people needing care must pay.
 When these details are provided by statute, both the Assembly and Senate must pass a bill with the same language to     change the law. The change becomes effective with the Governor’s approval or over a veto with a two-thirds vote in both   houses of the legislature. This process gives the public an opportunity to give their input and tell policy-makers how the changes will affect them.

Senate Bill 11, however, will give that power to the Secretary of Health Services if passed. The bill allows him to change these details by publishing a rule. Unlike with legislation, these changes could become law before the public is even aware. Giving so much power to make these kinds of law changes has not been seen up to now.

The law provides for only two limits on this power. First, the Secretary must give advance notice to the co-chairs of the Legislative Joint Finance Committee. Both co-chairs are currently from the same party so, unless they let others know, most members of the Legislature will not know about the changes until they are published. The Committee chairs can, however, delay or stop the proposed changes by action of the Committee.

The second limit on the “edict” power is that most changes would have to be approved by the U.S. Department of Health and Human Services. If not approved by the federal government, other cuts to medical assistance will go into effect.

Cuts are most likely to affect individuals and families making more than 133% of the Federal Poverty Level, as little as $1,207 monthly. People with disabilities and others have fought hard for protections that give them care to keep them alive or allow them to live in the community and work real jobs. They are afraid that changes might be made to take away these protections before they even know someone was thinking of particular changes. The two limits on power may not be enough to protect them. Read an excerpt of a memo from Wisconsin’s Legislative Reference Bureau. 

Reposted by permission from the Direct Care Alliance.

Healthcare Typecasting – “Nobody Knows My Name!”

Shakespeare had it wrong. If a rose were called a stinkweed, it wouldn’t smell as sweet. And if Romeo’s name had been Rosencrantz or Guildenstern, Juliet might have had a long and happy life. Names signify.

That was the message I took away from Paula Span’s recent New York Times blog “What’s In a (First) Name?” about the way health care professionals address patients. Most comments agreed that doctors, nurses, and other health care professionals should acknowledge the patient’s unique identity by using his or her preferred name. The patient is a person—the first principle of compassionate medicine.

Names also matter to the relative, partner, or friend who has major responsibilities for providing or managing that person’s health care—the family caregiver. But before you have a name, you have to exist. I’ve been professionally and personally involved in caregiving for the past 20 years. In that time many family members have told me, “I’m invisible in the hospital/nursing home/rehab facility.”

“Invisible,” that is, until it’s time for discharge, payment, or major decisions. Then the family member morphs into someone with a name, except it’s not a first name or a full name. And it’s generally not “Sweetie” or “Honey.” It’s “The Wife,” “The Daughter,” “The Son,” “The Friend.” Typecasting is a convenient way for professionals to distance themselves from the individual who is not their patient, but who makes demands on their time and attention. The relationship between family members and the patient’s health care team is ambiguous, sometimes collaborative but often full of conflict.

As The Wife for my late husband who suffered a traumatic brain injury and was left quadriplegic, I was expected to be at the service of professionals, do their bidding, fill in the service gaps, and be the passive recipient of their “teaching.” My other responsibilities and preferences counted for naught. An elderly mother, a full-time job, children and grandchildren—nothing mattered.

The category of The Wife came with certain expectations, different from those of The Husband, who was given far more leeway. Husbands were praised for just showing up, but wives were expected to do the dirty work. I suspect that the same differential exists with The Daughter and The Son. It was not that I did not want to be known as a wife; it was in fact that I wanted to be able to maintain that identity in a way that preserved and honored our long and loving marriage. The only time I remember my husband crying in the rehab facility was when a nurse berated me loudly in his presence for failing to master some medical technique on the first try. He wanted to protect me but couldn’t. By turning me into a distorted version of a wife, the nurse had taken away his identity as a husband.

Who was I? I immediately rejected the research term “informal caregiver,” which bore no relation to my demanding responsibilities. Other terms like “care partner,” “caretaker,” “support person,” or “volunteer” may work for some, but not for me. The British term is “carer,” but that is unlikely to take hold in this country. I finally acknowledged that I was a “family caregiver,” with “family” referring to who I was and “caregiving” describing what I did.

Many people do not recognize themselves as family caregivers and do not like the term. They may feel that this designation deprives them of their primary relationship to the patient or that they may become overwhelmed by responsibility, not an unrealistic fear. At the United Hospital Fund we created a Next Step in Care guide to becoming a family caregiver, which stresses the importance of self-identification in health care settings to assert one’s rights to participate in care planning and obtain appropriate and timely training. Another guide helps family caregivers rebut misinformed claims that the privacy rules under HIPAA prevent sharing information with them. Community services for family caregivers are available for those who are ready to seek them out and are willing to take on the designation for this purpose.

Being proactive is the best way to assert one’s identity and importance in the patient’s well-being and care. Just as health care professionals are supposed to introduce themselves to every patient, family caregivers should introduce themselves to everyone who plays a role in patient care. “My name is _________. I am _________’s ____________ and also his/her family caregiver. Let’s talk.” Having a name and an identity will not guarantee an effective working relationship with professionals, but it’s a good start.