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.

Much ado about (Tiger) mothers

Tiger Mom and Cubs

Amy Chua’s recent memoir, “Battle Hymn of the Tiger Mother,”  produced a maelstrom of outrage, fear, and a bit of nervous guilt among American mothers.  As is now well-known, Chua boasts that her traditional Chinese and highly authoritarian parenting style has produced daughters who have and will succeed as she did, leading commentators to both rail against her for cruelty to her own children and to cringe at the thought that parenting is one more area in which the Chinese are superior to Americans.

But what is the fuss about, really?  Who cares if a Chinese-American law professor from Yale drives her daughters like a banshee?  We do.  The rules of one of our favorite spectator sports, competitive mothering, are at stake.  If she is correct, then the legions of “helicopter mothers,” who have carefully organized their children’s lives to reinforce their self-esteem and sense of entitlement, have failed.  Instead of encouraging their children’s innate giftedness, they should have berated them to do better.  Chua is the Simon Cowell to a nation of mothers who truly thought their children were talented, only to learn too late that they are tone-deaf.

And yet, is the agitation produced by this little tome really about competing styles of mothering, or is it simply one more reflection of the culture of competitive motherhood that has taken over middle- and upper-class life? As Stephen Colbert noted in his hilarious interview with Chua, “Moms alone determine how our kids turn out.  Couldn’t be dads because we’re never there.” He holds up his hands, “No fingerprints!” 

I continue to be astonished that as the number of mothers working outside of the home continues to rise, and the number of hours fathers spend with their children rises too (though not as quickly), Colbert’s joking statement continues to ring more true than it did when my mother stayed home during the first few years of my life.  Sure, mom was important in the 50s, and 60s, but so were factors like innate temperament, IQ, and the influences of other children.  I’m not suggesting that we should return to measuring children’s abilities based on these other influences, but that maybe we need to lighten up on mom.

This is no small task.  Even though advice books and magazines euphemistically use the word “parenting,” we know that they really mean mothering.  And in every bit of advice on cognitive stimulation, socialization and proper nutrition, there is a hidden caveat: “if you don’t heed this advice, your child won’t get into Harvard.” 

We laugh at this well-worn trope, but there is no question that the stakes have never been higher for childhood success.  The Millenials are the first generation since the Great Depression who are likely to be worse off economically than their parents.  The gap between the middle-class, the rich, and the super-rich are expanding like never before.  Like it or not, Americans view mothers as the last bastion against downward mobility.  Producing upwardly mobile or at least economically stable children is hard work, and it is women’s work.

In my own research on nannies and their employers, Shadow Mothers, the central tension between employer and employee was the paradox of upper-middle class mothers trying to reproduce their cultural capital via working-class or poor nannies.  The belief in child perfectibility combined with long hours away from the children  turned otherwise intelligent, reasonable women into unreasonable employers.  If, as Sociologist Arlie Hochschild has stated, the family is the ‘shock absorber’ for changes in the economy, the mother-childcare provider relationship is the shock absorber for the gap between working mothers’ aspirations for their children and reality.

Chua is similar in many ways to the mothers I interviewed.  She hired a nanny who speaks Mandarin in order to increase her children’s cultural capital.  Likewise, the mothers I interviewed strategically employed particular types of Spanish- or English-speaking nannies to broaden their children’s language skills.  Their mothering practices differ not in intensity or anxiety, but in tone. 

Our blame-the-mom and fear-of-children-falling obsessions get in the way of successful childcare partnerships.  They also create the kind of hysteria that met Amy Chua’s somewhat silly and self-indulgent book.  More importantly they place relentless pressure on both mothers and children to live up to unattainable goals.  Ultimately, is the practie of making children the primary product of their mothers’ time, energy and money healthy?  Is it good for mothers to spend less time with their friends, their spouses and themselves in order to invest more time and energy in producing the perfect child?  This relentlessness may be no good for anyone, regardless of whether it takes the form of the Tiger mother’s threat or the helicopter mother’s micromanagement.  Fair or not, both sets of mothers face an all-consuming job in which their children’s long-term success will be the measure of their worth.

Helicopters With Nowhere to Land: From Context Crawler by Shannon Golden

The Washington Post recently ran a column written by Middlebury sociologist Margaret K. Nelson. Nelson reports on potential implications of “helicopter parenting” (the constantly hovering style of super-involved middle class parents) in the lives of the parents themselves, especially mothers.

Helicopter parenting is, to put it mildly, more time-consuming and more emotionally demanding than other parenting styles. And much of its work falls (as the work of parenting always has) on women. Since 1965, the amount of time mothers spend on all child-care activities has risen, even though the majority of mothers are now in the labor force; the increase has been particularly sharp among highly educated mothers.

So it’s not just that today’s professional mothers are holding down what would, in the 1960s, have been two separate jobs — one inside the home, the other outside it. It’s that the first of those jobs is a lot more taxing than it used to be. Mothers who try to live up to the new parenting standards of the professional middle class seem to have few options: They can overwork themselves, or they can leave the workforce.

While some mothers do leave the workforce, many do not. Their intense devotion to building a relationship with their kids and working outside the home can be understandably taxing on their other relationships, such as friendships, marriages, and community involvement.

For those helicopter mothers who don’t leave the workplace, personal relationships seem to be the first thing to go. Working a demanding job while paying painstaking attention to one’s children leaves little time for maintaining a marriage…

[A]ccording to sociologists Suzanne Bianchi, John Robinson and Melissa Milkie, adults in 2000 spent less time with their spouses than adults did in 1975, as they spent more time at work and more time with their children. The higher divorce rate among women with high-pressure careers could therefore be both a cause and a consequence of intense devotion to one’s children: These mothers may find that the only reliable, and persistent, relationships are those with their kids.

When people turn inward to their families, their communities also pay a high price. In a series of studies, sociologists Naomi Gerstel, Sally Gallagher and Natalia Sarkisian have shown that, parenting practices notwithstanding, marriage is a greedy institution. Compared with singles, married people are less likely to visit relatives, less likely to take care of elderly parents and less involved with neighbors and friends.

I suspect that the tendency to turn inward must be even more intense among hyper-vigilant parents. And this withdrawal may extend to parents’ broader social and civic engagement…

And to friendship. The time married parents spend visiting with friends and relatives outside the nuclear family has declined dramatically: Married fathers spent almost 40 percent less time and married mothers spent almost a third less time socializing in 2000 than they did in 1965, according to Bianchi, Robinson and Milkie. I can’t help but think that the new intensity of daily life is part of the problem. Parents seem to have few opportunities to pursue friendships unless they are friendships that take little extra time (as with co-workers or other parents on the sideline of a child’s sporting event).

Many of the helicopter mothers I’ve spoken to have told me, often with pride in their voices, that their daughters are their best friends. At first, I wondered why these women — some of them in their late 40s or 50s — wouldn’t prefer to spend their free time with people their own age. But as I looked more closely at the way they are tackling parenthood, I understood: They have no free time.

Blog post from Context Crawler by Shannon Golden

All In the Family: Rise in Multigenerational Living

Last week’s issue of Newsweek magazine reported that multigenerational living in the U.S. is on the rise. According to the U.S. Census, households with three or more generations increased by 38 percent between 1990 and 2000, to about 4 million multigenerational households in 2000. Since then, the trend appears to have continued with the number of parents living in the homes of their adult children having increased by 67 percent between 2000-2007, as well as more adult children moving back home with their parents.  Part of this trend may reflect an increase in immigration to the U.S., with many immigrants preferring extended-family living.  Also, these changes likely stem, at least in part, from tough economic times. As sociologist Frances Goldscheider points out in the article   “It is so much less expensive to have one kitchen, one living room, one dwelling to heat.”  Furthermore, changes in young adulthood with the extended time it takes for young people to complete their education and attain financial independence may partly explain young people’s “failure to launch” and prolonged coresidence with mom and dad.  On the other hand, increased longevity may mean that more elderly parents are moving in with their adult children as they are healthy enough to live without intensive medical care, but may need or prefer family help or care.  But in addition to these economic and demographic changes, there is likely a cultural shift around intergenerational relations toward closer, friendlier connections between generations that may make multigenerational living more appealing. As family scholar Stephanie Coontz remarked  ”Over the past 30 years, more democratic methods of child-rearing and delay of marriage have resulted in deeper friendships between parents and children.”

Certainly multigenerational living  may present some challenges to family members, particularly those who do the bulk of the household work and caregiving.  But this also may offer new possibilities for lifelong family relationships, shared care and pooled resources that may benefit all family members, particularly those in the younger and older generations.

Who stands between you and your doctor

Turn on Fox “News” on any given evening during this health care debate summer, and you will hear threats concerning the future of your relationship with your physician:  “Whatever it is, it’s a lot of government between you and your doctor.”

Regardless of whether the healthcare reform passes, whether it creates any new bureaucratic structures, whether it regulates healthcare delivery in new ways or not, it is a myth to assume that Americans – insured Americans – have an unmediated doctor-patient relationship.

Take for example the Cancer Center where I conduct my research.  I am  a participant observer in a large hematology and stem cell transplant clinic.  Patients and doctors have dozens of meetings a day in the exam rooms that surround the “back of the house” area.  Each meeting involves critical discussions about chemotherapy, radiation, medications to control side effects, prolonging life, avoiding death.  I’ve sat in on over one hundred of these conversations – they are quiet, serious, detailed, overwhelming.

The back of the house is overwhelming in a different way.  A “W” shaped room is lined with computers – at each computer sits a doctor, a nurse, or a nurses’ aide.  Beside them are the files, often five or six inches thick, for each patient.  They read MRI results, blood tests, and doctor’s notes on their computer screens, as each nurse updates a doctor on his or her next patient, or a doctor or nurse practitioner grabs a moment to dictate medical notes in high-speed med-speak.  I stand in the corner to try to stay out of the way.  On a busy day it has the feel of the barely controlled chaos of air-traffic control at a major airport.

One computer stands out from the others.  A white haired woman named Alice sits on a raised stool at a computer in one corner of the W.  She is constantly talking, on the phone, to herself, to one of the physicians, and piles of patient files surround her.  Alice deals with insurance.  All day long doctors shout questions to Alice: “Was the donor matching on Mrs. X approved?”  “Does patient Y have a hospice benefit?”  And the biggest question of all: “Can we get patient Z approved to use Chemotherapy X?”

This last question struck me as odd the first time I heard it.  Especially when I realized that Alice had to call a nurse case manager at the insurance company to get case-by-case approval.  Not for Medicare or Medicaid – those plans have annually approved medication guidelines.   Doctors tell me they have an easier time making a treatment plan with those insurance guidelines because they know up front what drugs are in their arsenal.  Private insurance companies are the problem – those gold plated plans with the high premiums have case managers who haggle over every deviation in the treatment plan.

The problem here is that cancer treatment varies significantly from patient to patient.  One patient may not be able to tolerate the most commonly prescribed chemotherapy and may need a second-line drug.  Or their cancer may not be responding as well as expected, so the Oncologist may wish to switch to a different mix of therapies.  Each of these decisions must be agreed to by the case manager.  In many cases, this is a pro forma agreement.  The physician makes the medical case for the deviation in treatment plan, Alice explains it, the case manager signs off. 

In many other cases, however, the insurance company won’t go along.  I’ve listened as Alice, then one physician and then another argue with one case manager, then the medical director, only to hit a wall.  This is the invisible bureaucracy at work.  The denial is not written anywhere that the patient can see.  Most of the time, the entire battle takes place behind the scenes and in the end, the patient is simply not offered that particular treatment option.   The doctor simply constructs plan C.

How many plan Cs are created every day whithout our knowledge?  How much of our medical care comes under the purview of these shadow regulators?  Perhaps we will never know.  I don’t know about the guys at Fox News, but I’d prefer to have my regulations out in the open where I can see them.