Recapturing the Joy of Life

Why do so many people today view planned death as a good answer to personal and social problems? Why are they more interested in the mechanics of dying than the adventure of living?

Observers suggest that the culprits include nihilistic philosophy, the decline of religious belief, and the worship of autonomy. They note that population controllers make grim calculations that favor death. So do many people who worry about spiralling costs of medical care.

For people suffering from clinical depression or other severe mental illness, and for those facing possibly bleak years in a nursing home, death may seem to be a rational solution—although I will argue later in this essay that there is much we can do to help such people recapture the joy of life. There is, however, a more pervasive problem. It is that many people simply find little joy in life, so they do not understand its value to themselves or others. They are suffering from something that might be called cultural depression. "It is embarrassing," Peggy Noonan has written, "to live in the most comfortable time in the history of man and not be happy."1 Our contemporary culture itself, for all its emphasis on entertainment and fun, produces unhappiness.

There is an old Southern expression: such-and-such "kills my soul." If we determine what it is about our culture that kills our souls, we may find ways of helping people rediscover the value of life.

While answers to this question are necessarily subjective, many people are likely to give the same ones. Many believe, for example, that electronic bombardment is out of control in our society. It is hard to escape the constant blabbering of television—not only in homes, but in stores, waiting rooms, airports, now even post offices. Television has become the babysitter for people of all ages, and not a kind or cheerful one, speaking unceasingly about murder and mayhem, earthquakes and killer tornadoes, bombing campaigns and wars.

Radio, too, is everywhere with its loud, violent music, its mindless commercials, and its talk-show hosts’ pontificating for hours at a time. Even those who agree with the latter sometimes want to mutter, "Well, Dr. Laura, it must be nice to know so much that you can answer a question before the person has even finished asking it" or "Oh, stop shouting, Rush!"

Telephones, once stationary, now accompany the garrulous wherever they happen to go, assailing us with other people’s business when we’re standing in a grocery-store line, dead-tired after a day’s work, or walking down a street, enjoying the peace of a lovely day. Beepers go off in the middle of meetings or parties; even computers and automobiles "talk."

The problem is not only the pervasiveness of nerve-jangling noise but also, and more importantly, the content of our mass media. Decades ago, cultural critic William F. Lynch remarked that Hollywood needed to receive "a continuing protest that we may be good or we may be bad but we, as human beings, are not junk in our inner apparatus."2 And that was before things were truly out of control. Now, 50 years into the TV age, tasteless films and television programs kill our souls, whether by being actively violent and pornographic; merely stupid, like situation comedies whose producers think the viewers need laugh tracks; or vulgar, like commercials for personal-hygiene products. The powers-that-be in television appear to have little respect for the human body or the human person. It is hard to find on TV any hint of the potential greatness or nobility of human beings.

Personal computers, the major revolution of recent decades, make a wealth of information easily available. Their word-processing capability is a great aid to writers, lawyers, and office workers. Yet computers, like many other inventions, are a mixed blessing. The Internet is a major purveyor of pornography and violence; it passes on much misinformation; and it leads many people to prefer "virtual reality" to reality itself. (After seeing a piece touting an astronomy Web site for its beautiful views, I thought, "Well, hey, guys, did you ever think of walking outside at night to see the real thing?")

Advertising, on television and online, is a major engine of our economy. It burns commercialism into our very souls. It teaches children to say, "Gimme!" and "More!" and it pushes their parents to run faster on the treadmill to make more money in order to buy more stuff. And buy more stuff they do: bigger and more expensive cars and houses, more than enough clothing and shoes. They spend bundles of money on labor-saving devices; then, fearing health problems from lack of exercise, they put large sums into exercise equipment and fitness centers. (Wouldn’t it make more sense to forego, say, both the riding lawn mower and the exercise machine—and to get more exercise by pushing an old-fashioned mower?)

There would be a redeeming feature in our frenetic work pace if the possessions it pays for at least had grace and charm. But so often they do not: the "McMansions," which are gobbling up beautiful farmland at an alarming rate, illustrate the problem. Architect Sarah Susanka summed it up this way: "So many houses, so big with so little soul." She described a venture into contemporary suburbia where she felt "as though I was driving through a collection of massive storage containers for people."3 

Sherlock Holmes referred to "that supreme gift of the artist, the knowledge of when to stop."4 Our architecture today, and much else in our culture, are marked by the lack of that gift. There is a heaviness in the mini-mansions, the oppressive office buildings, and what someone called the "Pizza Hut churches." We desperately need a light touch.

There is no magic wand that we can wave to improve our dreary culture. Yet we can make our own decisions to keep our distance from its worst aspects, and we can try to foster the joy of life for ourselves and others. If enough of us make such decisions, we can gradually change the culture—one person and one family at a time.

What to do about television is a central question. Philosopher Sissela Bok, in Mayhem: Violence as Public Entertainment, notes that screening devices such as the V-chip and Cyber Patrol can help parents protect their children from the worst programs. She promotes school "media literacy" programs that show youngsters how to analyze TV programs and, if so inclined, to act against objectionable ones. She also notes possibilities ranging from lobbying TV executives for better programming to boycotting the sponsors of objectionable programs. "Cultures are not frozen in stone," she writes. "Violence is taught, promoted, glamorized; it can be unlearned, resisted, deglamorized."5 

However, there have been many such efforts to improve TV in recent decades, and yet the beast has become ever more violent and sleazy. Michael and Diane Medved have a more radical idea: drastically reduce family viewing time, and consider getting rid of television altogether. In Saving Childhood, the Medveds note that televised fiction is by no means the only problem. Television news, they say, gives children a "sad, horrific, and harsh view of the world." The medium also encourages impatience (through its quickly-changing images), self-pity (through its commercials’ "emphasis on lack and need") and superficiality (through its "preoccupation with glamour and good looks").6 

Realizing that many people cannot quit TV cold-turkey, the Medveds recommend strategies for phasing it out. Remove all TV sets from bedrooms, they suggest, and then from the living room and kitchen. Confine the monster to just one room, and then make it more difficult to watch. "Cover it with a tablecloth, and top that with a potted plant . . ."7 

Another path, and one the Medved family follows, is to have a television set, but no antenna or cable connection. They use their set only to watch videos. The parents carefully screen the videos their three young children watch, and they limit the children to six hours of videos per week. When I described this system to a mother of four, she responded: "Try that when they’re teenagers." A good point; yet the Medved system at least gives a fighting chance to alternatives such as playing outdoors and reading books.

The benefits of doing without television are very great: genuine peace and quiet, freedom from non-stop advertising, time to read books and talk to one another. Best of all, perhaps, is the freedom from the social and political indoctrination that television inflicts on everyone who watches it. If only ten or fifteen percent of Americans were free of it, I suspect, they would make our politics far more independent. By showing that no one has to accept what Hollywood deigns to offer, they might even improve the culture.

On the broader problem of too many possessions, there is wisdom in a rhyme I learned from one of my grandmothers: "Eat it up/Wear it out/Make it do/Or do without." We may not give up automobiles, but most of us do not need huge gas-guzzlers or sports utility vehicles. We may not give up electricity, but we can do without many of the gadgets that it powers.

Few material things are more important to us than our homes. Probably most of us feel about them the way John Wemmick, the law clerk in Great Expectations, felt about his. Mr. Wemmick’s tiny cottage was a true refuge; it looked like a castle and was surrounded by a moat. A simple plank served as his drawbridge. "After I have crossed this bridge," he said, "I hoist it up—so—and cut off the communication." Every night at nine o’clock, he fired a cannon from his little domain, to the delight of his father (the "Aged Parent" or "Aged P."). No office-at-home routine for Wemmick: " . . . when I come into the Castle, I leave the office behind me."8 

But Wemmick’s castle was a small one. He had not taken on a lifetime of financial strain to pay for it. Many people today would be far happier if they bought smaller, less grandiose homes. Young couples who are just starting out might resist advertising pressures by reflecting that most people are far more impressed by a happy marriage than by a huge house or expensive car. Even wealthy couples who are tempted by mini-mansions might consider buying more modest homes and donating the difference to Habitat for Humanity so that poor and working-class people can have homes, too. Such generosity might well give them more contentment than a trophy home would.

We can show children that real life is more interesting and exciting than its electronic and processed versions. We can walk in the woods with them; teach them about bird calls and beaver dams; go canoeing with them; show them how to plant a garden; visit a farm with them; take them out to a ball game; take them to an historic site and tell them about the exciting things that happened there.

"All of this sounds very nice and noble," some may say, "but where are we to find the time to do such things?" Forgive my mentioning it again, but getting rid of television provides more than enough time—about 24 hours per week on average, according to the Medveds.9 Doing such things with children and teenagers may give them an interest in lifestyles and careers they otherwise would never have considered, ones that may bring them great happiness and enable them to give happiness to others. As Lady Bird Johnson, who has done so much to increase the joy of life through wildflowers, put it: "You should work at the projects that will make your heart sing."10 We need talented park rangers, florists, and nursery owners. We need accomplished farmers, musicians, and artists. Great architects, teachers and writers.

Young people should know that they do not have to accept today’s culture as given, that they can make a conscious effort to offer something better to their peers and later to their own children. They can follow the example of Frances Hodgson Burnett, author of The Secret Garden, who once said, "With the best that I have in me, I have tried to write more happiness into the world."11 

In addition to cultural depression, some people must deal with severe clinical depression, manic depression, or schizophrenia. It is hard to imagine greater roadblocks than these to the pursuit of happiness.

Yet there is genuine hope for mental patients in new medicines and in programs that provide both practical and psychological support. There is special hope in the fact that recovering mental patients are helping to design and run programs from their first-hand knowledge and that articulate family members are supporting and publicizing such programs.

Jay Neugeboren, whose brother Robert has struggled for decades with severe mental illness, believes that family members should not assume that only a complete cure can enable their loved one to lead a relatively normal life. Instead, he argues that "one can recover and reclaim responsibility for one’s life without having to be fully cured" and that "one can have a full life while still having symptoms."12 This is good news indeed, because there are still many unknowns about the precise causes of major brain disorders. While some people obtain complete cures, and while there is much promising research, there is no guarantee that total cures will be found for everyone.13 

Neugeboren tells many success stories in his splendid book, Transforming Madness. One of his favorite examples is Moe Armstrong, an ex-Marine who had a schizophrenic breakdown in Vietnam and spent many years afterwards as a wanderer, addicted to alcohol and street drugs. People with serious mental illness often "self-medicate" with these substances, which may give temporary relief but generally make their illness worse. Armstrong had "auditory and visual hallucinations, suicidal fits of depression, and wild fits of rage." He married and divorced several times. Finally, though, he was able to leave street drugs and alcohol behind and to earn several university degrees. Sometimes with anti-psychotic drugs, sometimes without, Armstrong leads a rewarding life helping other mental patients in his full-time job with the non-profit Vinfen Corporation in Massachusetts. He does this despite still having hallucinations and depression at times.

A big, kind, and immensely creative man who enjoys music, writing poetry and drawing cartoons, Armstrong has hard-earned wisdom about helping people with mental illness. Most of us wouldn’t think of medical-alert bracelets, for example, but Armstrong explained that: "There’s almost no stigma attached to med bracelets, and that way when a cop has to deal with us, he’ll know who we are, and can get us back to our residences, or clinics, or to our case managers, and not be dragging us to court or jail." He stressed that there is no one-size-fits-all solution: "There is no such thing as a schizophrenic or a manic-depressive or a borderline," he says. "We’re each different, and our problems each need different solutions. Otherwise, it’s like trying to put square pegs into round holes." He stops. "And what if I’m a hexagon? A lot of us are hexagons, you know."

"You can avoid a lot of mistakes if you simply talk with people," Armstrong said. "You can increase levels of understanding, and—for starters—find out what triggers their breaks by asking them what they think helps, and what they know sets them off. That way you can avoid a lot of things that bring on breakdowns and lengthy hospitalizations."14

Shery Mead did this at a respite center she started in New Hampshire. Like Armstrong, Mead has struggled with severe mental illness for most of her life. A former music teacher and professional guitarist, she started a residence offering short-term stays for people in crisis who want to avoid hospitalization. Such people must, in advance of an emergency, come to the center and formulate their crisis plan. Center staff, themselves recovering mental patients, help them by asking questions such as "When you are bouncing off the walls, is it best to leave you alone, or to put an arm around you?" or, "When you had breakdowns before, what helped—and what hurt?" or, "What do you keep hidden from people when you are in a crisis?"

While it does not offer psychiatric treatment, the center provides a safe and kind place to stay—with friendship and support from people who have "been there." Jay Neugeboren says that it has given people in crisis "somebody to talk with and be with when they wanted—which they never had in hospitals, where mostly they were left alone." It has enabled many people to avoid hospitalization and has given them new hope and new ability to help themselves. It also has saved a significant amount of money for the State of New Hampshire: In 1997, state hospitalization cost about $500 per day, while the respite center cost roughly $130 per day.15 

It is not enough to help mental patients only when they are threatened by breakdowns. They also need help in finding and keeping jobs, help like that provided by another New Hampshire program, run by the West Central Services mental health center. The work is not glamorous—janitorial and mailroom tasks, for example—but it gives them income and a growth in confidence. "For persons who have been hospitalized and brutalized and out of it for years," a West Central staff member told Neugeboren, "simply being able to think of themselves as something other than mental cases—loons or nuts or schizos—and to have others not think of them this way—can make all the difference."16 

There is widespread agreement that programs like these should have been in place when, decades ago, states started releasing huge numbers of patients from mental hospitals. Because most states did not have effective programs in place, many mental patients wound up on the streets, in subway stations, in homeless shelters, in jails and prisons, or out in the woods somewhere. Many are still there.

Observers have often blamed deinstitutionalization on lawyers and judges who opposed involuntary commitment even for people who posed a clear danger to themselves or others. Yet, as psychiatrist E. Fuller Torrey notes, state governments were eager to release patients so they could shift costs from their own budgets to federal programs such as Medicaid, Supplemental Security Income (SSI), and food stamps. Dr. Torrey contends that mental patients were "driven out" of state mental hospitals "by the odd alliance of civil liberties lawyers and conservative state legislators who encouraged deinstitutionalization to save state funds." This combination, he says, caused the process "to careen out of control and down a steep embankment, where it remains to this day."17 

Releasing patients without providing a safety net has led to additional misery for people who already suffer torments from hallucinations, delusions, compulsions and/or paranoia that most of us cannot imagine. It may have been penny-wise but pound-foolish for the states, too. They may have paid more to house severely mentally-ill people in jails or prisons than they would have paid for good programs of support in the community.

There is a tendency to rely on "magic bullet" medications to deal with severe brain disorders. Some of the newer drugs are an enormous help to many patients, even leading to Rip Van Winkle stories of people who return to relatively normal life after many years in institutions or out on the streets. Some drugs even stop the "voices" that torment so many schizophrenics.18 

Yet a significant number of mental patients are helped little, if at all, by the new drugs. And, old or new, mood stabilizers and antipsychotic drugs have side effects that may include sedation, great thirst, hair loss, involuntary twitching and grimacing, restlessness and constant pacing, drooling, incontinence, major weight gain, nausea, skin disorders, kidney or liver damage, serious decline in white blood cells, dizziness and headaches.19 This is one reason why so many patients stop taking their medications. Generally speaking, though, the new drugs have fewer and less serious side effects than the old ones. Where side effects are a problem, reduced dosages or substitute drugs may solve them. In any case, careful monitoring is essential.

Many patients also need "talk therapy" to help them deal with their illness. As psychologist Kay Jamison wrote about her own battles with manic depression, "psychotherapy heals. It makes some sense of the confusion, reins in the terrifying thoughts and feelings, returns some control and hope and possibility of learning from it all . . . . No pill can help me deal with the problem of not wanting to take pills; likewise, no amount of psychotherapy alone can prevent my manias and depressions. I need both."20 Many patients also need the kind of consistent support in the community that the Vinfen Corporation, West Central Services, respite centers, and other programs provide.

Many family members, though, cannot pay for such care out of their own pockets without facing bankruptcy in short order. Writer Peter Wyden acknowledged that it "pains and shames me every day" to know that his son Jeff—afflicted with severe mental illness for roughly thirty years—was on welfare and that "his mother and I are reduced to beggars who can’t be choosers. . . . Until Jeff can produce some income and his need of medical support is greatly reduced, the cost of his care is such that it would soon wipe us out, which would help no one." Wyden, still working in his seventies, stressed that he had "paid hundreds of thousands of dollars to Jeff’s doctors and hospitals as long as I could" and added that "I’m still supplementing the government efforts with more thousands of my own and working as best I can to get Jeff off his dole."21

The case for government programs to aid those who have severe mental illness is stronger, it seems to me, than for nearly any other kind of government spending. Not only are these people severely disabled, but often their suffering is beyond what most of us can comprehend. Too often, though, programs to help people with severe mental illness are among the first to be cut when times are hard.22 We need firm resolve to give them first priority instead of last.

This does not mean, of course, that just spending money is enough. The federally-funded Community Mental Health Centers that were started in the 1960s as alternatives to state mental hospitals were failures, at least in part, according to Dr. Torrey, because they focused too much on caring for "the worried well" instead of those with severe mental illness.23 In designing programs, advocates and government leaders should keep in mind a cowboy saying about choice of horses: "Careful what ya rope, ya gotta ride it."24 But there are plenty of good programs out there, and many good people who know what works.

One key to success is involving mental patients themselves in the establishment and running of such programs. So is having a stable program and kind, well-trained staff. People who are adrift on the terrifying seas of mental illness desperately need steady anchors. Some have been harmed almost as much by cold, uncaring staff—or by arbitrary transfers of good staff—as by their illness itself.

Larry Kohn, who directs a Boston University program to train mental patients in computer skills, exemplifies the traits a person working in his field should have. One of his clients, who has serious depression and multiple personality disorder, had to be hospitalized during her computer studies. Kohn visited her several times, and she thought, "He really cares about me . . . . He must believe in me, then, doesn’t he?" Later she said, "That made more difference than all the pills. It fired my will to keep going." A man with manic depression said that Kohn "was the first person to make me feel like a person instead of a patient . . . . He was the older brother I never had. There’s a lot of terror in psychiatric illness, you see, and it makes all the difference in the world to have someone there with you in the darkness."25

Programs like the one Larry Kohn runs help people with mental illness become as self-sufficient as possible. With proper medication and support, even those with severe mental illness can work at least part-time. Many can work full-time at jobs ranging from unskilled labor to extremely demanding and creative work. If properly assisted at first diagnosis and in times of crisis, many will need little public support; some will recover to the point where they no longer need medications. But, unless complete cures are found, most will always need some form of care. "I believe that for most of us," Moe Armstrong said, "having a psychiatric disorder is going to require low-cost lifetime maintenance, the way diabetes and other chronic conditions do."26 

Those who do not have such disorders can help those who do by being knowledgeable and consistent advocates on public-policy issues. This might include advocacy on choice of programs ("Careful what ya rope"), support for adequate funding, or a welcome wagon for group homes in neighborhoods. Hostility toward such homes for mental patients has been a major obstacle to good programs.27

Friendship and support for mental patients is especially important. Extreme loneliness is one of the worst burdens mental patients carry. One woman recalled how her son had been doing fairly well but then had to be rehospitalized. What he received in the way of outside support, she said, was "nothing: no visits, no cards, no calls, no flowers."28 Friends and family should have responded in the same way they would have if the young man had appendicitis or pneumonia. Yet there is still much stigma attached to mental illness—and much fear of those who have it. While there is reason to fear those who have been violent in the past and now refuse treatment, most mental patients are not violent. "We’re really harmless and scared for the most part," Moe Armstrong said. ". . . As a group, especially given all the meds we take, we’re about the most frightened, mild-mannered, unthreatening folks you’ll ever meet."29 

With proper care and support from the public, recovering mental patients can experience the joy of life. Shery Mead, whose personal interests include cross-country skiing, triathlons and hang gliding, would like to take current programs even further. "Why isn’t there more adventure therapy?" she wonders. "Let’s talk more about adventure—about putting more life into our lives—and less about what might go wrong, okay?"30 

Amen to that.

Fiercely independent, the 76-year-old California lady had resisted having help in her home that she really needed. She was in poor health, with high blood pressure and leg infections from a fall. She was not eating properly or taking care of personal hygiene. Then suddenly she lost her home because she hadn’t kept up her mortgage payments.

Her daughter, who lived and worked on the East Coast and did not know about the eviction, flew out to see her. Walking in on disaster compounded, the daughter had to make emergency plans right away. Her mother remarked wistfully, "I never thought anything like this could happen to a little old lady like me."31 

There are, of course, many ways to help aging parents stay in their own homes and be relatively independent. These range from hiring cleaning or bookkeeping assistance and home health aides to obtaining "Lifeline" devices to summon help in an emergency. The trick is to persuade seniors to accept such help before emergencies occur.32 

Many seniors want to retain their independence but shed the burden of maintaining a house. Condominium, independent-living, or assisted-living communities are often good alternatives for them. Sometimes, though, poor health or senility makes a nursing home the only viable alternative—although one that many seniors dread as the "last stop." Ironically, while the overwhelming majority of seniors do not wind up in nursing homes,33 the fear of doing so at the end of their lives robs many older people of the joys of retirement.

There are enough mediocre and poor nursing homes to justify seniors’ anxiety. And even many of the good homes have an impersonal and regimented atmosphere that kills the soul. "Loneliness, helplessness, and boredom rage as fiercely in good homes as in bad ones," says Dr. William H. Thomas.34 

In the early 1990’s, Dr. Thomas, medical director of the Chase Memorial Nursing Home in rural New Berlin, New York, designed a radical solution for the problem. Why not, he asked, turn away from the ultra-medical model and make his nursing home over into a real home, where seniors could actually enjoy life? Why not make it something like the Garden of Eden?

With much help from his colleagues, Thomas started to "edenize" the Chase home. He was so successful that many other nursing homes have followed his example.

Edenization involves two major changes. The first is to fill the home with children, pets, plants, and flowers. These make the seniors’ "habitat" more natural and joyful.

The second change is to release the home’s staff from what Dr. Thomas calls "a paramilitary command structure," giving them instead a team approach in which they have substantial responsibility for their own work and schedules. This improves life for both staff and residents. "Tightly restrict workers’ daily routines with rules and regulations," Thomas says, "and you can expect the same to be visited on residents. . . . Residents will never have more autonomy or self-respect than that which nursing home managers grant their employees."35 

A study that compared the edenized Chase home with a traditional nursing home found that Chase had a lower mortality rate and less staff turnover. The infection rate among Chase residents dropped significantly after edenization, and residents needed fewer medications than before. Thomas, who believes that nursing homes tend to over-medicate their residents, was especially happy to see a reduction in the use of mind-altering drugs. One Chase resident, for example, had been taking haloperidol, an antipsychotic drug, because of her agitation. But after she started helping care for the home’s many pet birds, she no longer needed the drug. "The daily routine with one hundred parakeets," Thomas reports, "did more to soothe the agitation than the medication did."36 

Many nursing homes have groups of schoolchildren come in occasionally for a Halloween party or to sing Christmas carols. An edenized home goes far beyond this. Chase has its own child care center, an after-school program for students, and a summer camp. The home also hosts meetings of youth groups such as Brownies and Cub Scouts, and it even started a 4-H group for its rural area. The Chase volunteer program offers fifth- and sixth-grade students the chance to spend an entire day helping with plant and animal care and socializing with the seniors. The hubbub of children, Thomas says, "injects vitality into any environment. Their play, laughter, and song are potent medicines for the elderly."37

Resident dogs, cats, and parakeets offer the seniors another antidote to loneliness and boredom. Having so many pets around requires careful attention to selection, cleanliness and veterinary care; but Thomas believes the results are well worth the effort. He mentions one resident who was so devoted to her parakeets that, when hospitalized temporarily, she had to be assured that Sweetie and Tweetie were being well-cared for before she could turn her attention to her own recovery. Another resident, newly admitted after his wife’s death, was so depressed that all conventional efforts to help him failed. He stopped walking and eating—until he received two parakeets as companions. They eased his loneliness and restored his interest in life; soon he was able to return to his own home.38 

Dr. Thomas says that edenization "requires much more change in the heart than in the pocket" and that its costs "are minimal compared with the facility’s total budget." For example, in building a wildlife habitat on the grounds, "the more time you have, the less money you need"—and nursing homes "have plenty of time." Thomas also notes the possibility of obtaining financial aid from community groups, government agencies, or foundations.39

I suspect that many more nursing homes will opt for edenization if their residents actively work for change, as mental patients are now doing in their sphere. Organizing for change can itself reduce the deadly boredom and passivity that too often afflict nursing-home residents. The changes they win will help restore their joy of life.

Many residents, though, are too frail or depressed to speak up on their own behalf. They need help from family and friends, who should be present as visitors and volunteers in much larger numbers than they now are. H. B. "Corky" Rogers, chaplain of a Denver nursing home, talks of the need to "flood the nursing homes with volunteers." One visit at Christmastime, he remarks, "is not where the rubber meets the road."40 

Flooding the homes with visitors and volunteers could in itself radically improve the residents’ quality of life. There would be many more people to take wheelchair users outside on good days, to be special friends of residents who have no family left, and to offer more intellectually-stimulating programs than most homes now have. Mr. Rogers, addressing his fellow Christians, made a comment that people of other faiths, or no faith, should also think about: "If the Christians across America would commit at least one hour per week of service to a nursing home, the nursing home industry would make a dramatic turn for the better. . . . And, the terrible financial crunch in the industry wouldn’t make any difference."41 Such visitors and volunteers, after learning the ropes, could also be effective change agents within the nursing homes.

Every effort to aid people with disabilities and to enhance their joy of life should focus on helping them be as self-sufficient as possible. Some well-intentioned efforts fail because they are essentially paternalistic. Their designers forgot to ask the intended beneficiaries what they wanted and needed and what they could do to help themselves.

Yet there is, and always will be, a great need for skilled caregivers: nurses, nursing aides and attendants, physical therapists, psychotherapists, and social workers. In order to do their work well, and to stay with it for the long haul, they need support and honor.

Fair pay and good working conditions for nursing aides should be a high priority. Many of them make little more than the minimum wage, yet their work is among the most difficult—and most important—that anyone does. They should make more money, even if that means that wealthy executives of healthcare companies make less.

As Dr. Thomas pointed out, reducing the bureaucracy at the top and moving away from a "paramilitary command structure" to teamwork may be the best way to improve working conditions of both nurses and nursing aides. They, too, deserve the joy of life.

So do those who care for disabled family members in their homes or serve as advocates for them within the confusing bureaucracy of psychiatric care. Yet family caregivers often suffer from extreme isolation, receiving the occasional pat on the back but very little practical help. "Where’s our support?" asked one. "We’re not professionals. We haven’t taken one single course in this field and yet we’re supposed to handle these crises all alone." A man whose son was schizophrenic remarked, "The stigma of a mental disorder causes you to lose many friends. Even family members back off; they’re not around very much. I feel shunned by them. Our friends and family have not been supportive."42 

Home caregivers, no matter how devoted, need a break from their hard work and crushing responsibility. Respite programs—public or private, professional or volunteer—can be lifesavers for them. But they also need more support from other family members,43 and from friends and neighbors as well. Visits are good, but getting both the disabled person and the caregiver out into the community is even better. Here we might follow the example of Leslie Girard, who several years ago started a "Roll ’em Out" program for a Virginia nursing home. Realizing that many residents rarely if ever had a chance to go outside, she organized an annual event in which volunteers take residents out into the neighborhood. She hoped that the program would lead family members to "roll ’em out" on a regular basis.44 A similar effort is needed for people who are cared for at home and for their caregivers. Community picnics and block parties offer good occasions for this, and others can be found or invented. Sunshine, fresh air, and friendship can do wonders for people who have been cooped up inside for a long while.

I suspect that failures to include disabled people and their caregivers in neighborhood events are due partly to oversight and partly to an awkwardness or embarrassment that many of us learned as children. "Never stare at someone who has a handicap," we were told, and that made us all the more curious, more likely to sneak quick glances (but avoid eye contact) and less likely to be at ease in the presence of disability.

What both children and adults need to learn is that living with a disability is just a different way of being. As disability-rights activist Mary Jane Owen has said, "developing a few glitches, developing impairments, is not the end of the joy of life . . . we can enjoy life learning new functions and new ways of being."45 If we live long enough, all of us will develop glitches and impairments. Those who do not have them at the moment should be matter-of-fact in dealing with others’ wheelchairs, guide dogs, and so on—offering assistance where needed, but not making a great fuss. The basic approach should be: "No big deal. This is just another way to get around."

Society generally gets more of what or whom it honors. Given today’s celebrity culture, we can expect to see many more rock singers and Hollywood aspirants, more sports heroes and warriors and astronauts—but not many more caregivers who work with those most in need. People asked one nurse who worked in a nursing home, "Why are you wasting your training there?" They asked another, "Honey, why don’t you work in a hospital and be a real nurse?"46 

Those who see things differently can help by saying, "A nursing home? That’s wonderful! You can make a real difference in many people’s lives." Or: "You’re considering physical therapy as a career? That’s one of the most important jobs in the world. Go for it!" Perhaps, in response to the tabloid press and People magazine, we need a magazine called Good People about caregivers and advocates. Perhaps there should be a Nobel Prize for people such as Moe Armstrong, Shery Mead, and William Thomas. The next round of Presidential Medals of Freedom should include one for an outstanding nursing aide.47 

In honoring such people, and in thinking of all the work that remains to be done, we might remember something said by James Huneker, an American writer of the early 1900s. Huneker called himself a "Yea-sayer to life."48 If we all have this approach, we can do much to recapture the joy of life for ourselves and others.

NOTES

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