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- Brett Walls’ Magnificent Journey against Locked In Syndrome and United Health Care Paralysis October 28, 2014CHICAGO — Two blocks east of Chicago’s posh Magnificent Mile on Michigan Avenue, in the shadow of the spectacular John Hancock skyscraper, sits the world’s leading hospital and research enterprise in physical medicine and rehabilitation, the Rehabilitation Institute of Chicago. … Continue reading →
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- Eulogy for my mother September 18, 2016
Brett and Gayle, June 30, 2014
[Prepared for media release. July 16, 2014]
Brett Walls moved all of the fingers on his right hand and lifted his right forearm about eight inches. The date was July 9, 2014 and this movement was the latest miracle in a story filled with tragedy, heartbreak, love, courage, sacrifice, anger, despair and greed.
This emotional tableau is being painted in Cincinnati and features the journey of a family that is facing challenges that no family should ever face, and is seeing a spectrum of human and divine actions and responses that roil emotions and boggle minds.
It began on February 27, when restaurateur Brett Walls, 51, collapsed in his suburban Cincinnati home, crying out to his wife Gayle that something was wrong. Indeed, it was. He had suffered two aneurisms in his brain stem and 3 strokes of the very worst kind and location, leaving him motionless. Brett was near death. He was unable to move at all, except for vertical movement of his eyes, and unable to breathe without a respirator. His mental faculties were intact, but nothing else worked. He could hear and understand everything, but he couldn’t communicate. He had feeling in all of his extremities—but his brain had lost the ability to send messages to the rest of his body, so he could not move.
Worse, neurologists had a grim diagnosis and a hopeless prognosis. Brett was left in a rare condition called Locked-In Syndrome, which in laymen’s terms means ‘what you see is what you get.’ Doctors said there was no prospect for improvement. They had stabilized his condition–saved his life–but held out no hope for anything further.
And they presented Brett and his family with the most difficult choice of their lives. Do you want to live like this? If they removed the breathing tube, he would not survive. Would anyone question Brett’s decision to end such a limited life?
But on March 9, Brett chose life. With no prospect of improvement, he wanted to live. To fight the odds. The neurosurgeon had been very clear about the dim prospects, but he also said Brett was equally clear about his wishes to proceed a day at a time
The battle was underway, not just against such devastating medical odds, but—as it turned out—so much more, including an ongoing battle against people purportedly part of the business of sustaining health and well-being—insurance companies. Specifically, United Healthcare.
As the weeks go by, news is consistently bi-polar: Brett’s unexpected progress, really nothing short of miraculous; and maddening refusal by United Healthcare to be a part of the therapy that will be necessary to keep Brett progressing. UHC’s “manual” rightly shows that victims of Locked In Syndrome do not get better. Ninety percent die within four months, and those who live, do not improve—therapy or no therapy. Almost without exception. Brett Walls’ file was stamped HOPELESS and UHC was content to pocket his years of premiums. They understood the diagnosis and remained determined to ignore the progress reports that were consistent and shocking.
Day after day, there is a steady stream of small, but remarkable reports of improvement in Brett’s condition:
- Small movement in left foot
- Neck getting stronger
- Respirator removed; Brett breathing on his own
- Eating popsicles, apple sauce
- Beginning to form words. Can say ‘mom,’ ‘hi,’ and ‘bye’ (first word, Mom, spoken on Mother’s Day)
- Slight back and forth movement in head – to communicate NO (nearly all victims of LIS can move their eyeballs; Brett has used this from day one, looking up to communicate YES).
- Moving his fingers and lifting his forearms.
Not one of these improvements was expected by the medical team!
If you walked into Brett’s room today with no background, you’d see a tall, lanky man with a blank—even sad—expression, unmoving in his bed or stabilized in a reclining wheelchair. He doesn’t look like the personification of miraculous progress. But make no mistake, he is that. But there is so much more progress needed to bring back a quality of life that his movement beyond Locked-In shows is possible.
But in the midst of this painstaking but remarkable recovery, which shows the impact of physical therapy and the need for and efficacy of significant therapy, the massive national insurance provider, United Healthcare, has decided to do what it can to keep Brett locked-in! If you’ve read the John Grisham novel Rainmaker, or seen the movie, you’ll recognize the storyline here. Except this real-life victim of insurance company greed and evil practices is not dying. There is great hope, but not without the support of continuous therapy.
Today, Brett and his family continue to need substantial help. This includes the following:
1. Pressure, including media coverage, on United Healthcare to provide the assistance it is chartered to provide.
2. Ongoing financial support for medical care and family sustenance. There is a fund set up at http://www.gofundme.com/brettwalls
3. Volunteers to help the Walls family in many ways
4. Prayers of the faithful for continued healing.
“If there is no vision,” a 1599 version of Proverbs 29:18 reads, “the people decay.” Without a vision, missions can stagnate or waste away. A vision is an answer to the question: “What can and should we accomplish?”
Scott, Jaffe and Tobe in their book Organizational Vision, Values, and Mission, write: “Establishing a vision is picturing excellence—what a person, team, or organization wants to create in its best possible future. It is an evocative description of what is possible.”
The Valcort Group’s Chuck Thomas calls vision “held and frustrated values.” You know where you want to go, but haven’t got there yet.
A vision is not something “out there” that is impractical, but a way of painting a compelling scenario. It requires the ability to expand one’s sense of possibilities without drifting into the ethereal, and then to focus on what new initiatives can lead this stretching yet realistic image of the future. Even though vision directs us to the future, it is important to understand that it is experienced in the present. Powerful visions are never an escape from reality. A motivating and effective vision will connect today’s reality to a view of a better future.
I like the Top Nonprofits blog’s description a vision as “a one-sentence statement describing the clear and inspirational long-term desired change resulting from an organization or program’s work.” The blog also has a list of its 30 favorite nonprofit vision statements:
We’ve listed below 25 vision statements of large charities, Christian nonprofits, universities, and hospitals. Some are quite good; others need work. What do you think of these? Will they provide the direction and inspiration necessary to guide today’s actions?
How about your vision? Is your vision statement a guiding star for the important work ahead?
20 Nonprofit Vision Statements
Amnesty International: We will not stop until everyone can live in dignity; until every person’s voice can be heard; until no one is tortured or executed.
Bread for the World: We can end hunger in our time. Everyone, including our government, must do their part.
CARE International: We seek a world of hope, tolerance and social justice, where poverty has been overcome and people live in dignity and security.
Compassion International: Our vision is that children everywhere will be released from spiritual, economic, social and physical poverty and become responsible, fulfilled Christian adults.
Direct Relief Intenational: Better access to health services for people stuck in this cycle is integral to positive change on a humanitarian level and for economic productivity.
Food for the Poor: To be God’s instrument to help the materially poor and to renew the poor in spirit.
Feeding America: A hunger-free America
Focus on the Family: Redeemed families, communities, and societies worldwide through Christ
Goodwill: Every person has the opportunity to achieve his/her fullest potential and participate in and contribute to all aspects of life.
Mayo Clinic: Mayo Clinic will provide an unparalleled experience as the most trusted partner for health care.
Metropolitan Jewish Health System: We are dedicated to those we serve, each other, the community and our business partners.
Northpark University: Our vision, building on our core institutional identity – Christian, urban, multicultural – is to fashion a university of uncommon character and enduring excellence where faith, learning, and service meet.
Oxfam: A just world without poverty
Penn State University: Teaching students to be leaders with a global perspective. Conducting research that improves lives. Contributing millions to the economy and sharing expertise.
Red Cross: The American Red Cross, through its strong network of volunteers, donors and partners, is always there in times of need. We aspire to turn compassion into action
Save the Children: Our vision is a world in which every child attains the right to survival, protection, development and participation.
The Salvation Army: Into the world of the hurting, broken, lonely, dispossessed and lost, reaching them in love by all means, with the transforming message of Jesus, bringing freedom, hope and life
Wheaton College: Wheaton College seeks to relate Christian liberal arts education to the needs of contemporary society.
World Vision : Our vision for every child, life in all its fullness; Our prayer for every heart, the will to make it so.
Wycliffe Bible Translators: Our vision is that God’s Word will be accessible to all people in a language that speaks to their heart.
By Jim Jewell
A group of my friends led a wonderful start-up that was trying to bring new perspectives to a worthy cause, to reach faith-based constituencies who were not traditional supporters of environmental concerns. They had the plan worked out on paper, and even had a foundation to underwrite the effort for a couple of years. But although there were many who cheered from the sidelines, very few people were committed enough to provide significant financial support. When the grant money ran out, the charity all but disappeared.
1. Empty Optimism
This story is all too common. I’ve seen some of the best, most needed (in myview), and earnest efforts falter and fail because the leaders simply did not accurately calculate the amount of support that would be available and the alliances and partnerships that would buttress their humble beginnings. The first reason nonprofit flounder or fail is that the vision and the value proposition simply don’t “sell,” and the founders or investors didn’t have the tools or didn’t take the time to measure this before they poured time and treasure into a passionate desire that was not to be.
2. Values Vacuum
Healthy organizations establish core values that guide the way leaders and staff do business, and how they deal with each other and with outside people and groups at every point of contact. But I’ve found that it is far too common for autocratic and self-focused founders to establish one core value: “do as I say.” These nonprofit heads find it very difficult to transfer authority or to share the limelight and leadership with an empowered team. There is little internal trust, and insufficient values to guard against abuses of power, privilege, and people. It is also an environment in which many unethical and even illegal practices can flourish, and often do. These organizations frequently fail in the first generation, and almost never thrive when the leader with all of the chips finally cashes them in.
3. Competitive Blinders
Nonprofit leaders and ministry executives are frequently insular and blind to the external changes and “market” forces that will be their undoing. Often it’s because they are so focused on the needs and crises around them. Or they cannot imagine anyone or anything that would deter them from their righteous ends. And charities are often unfamiliar with, or even repelled by, the notion of “competitors,” so they don’t recognize true rivals or adjust to compete. There is no ability to adjust programs to match changing situations, culture, or competition and to compete for donations, volunteers, media coverage, or program space.
4. Iced Innovation
The emergence of the Internet and subsequent online innovations that have changed the world in many ways has made strikingly obvious a business truth that is actually timeless. If you do not innovate, you will disappear. If there is no adjustment of creative content, communications, or methods for new times and trends you will miss opportunities, and be judged as antiquated (and perhaps irrelevant). Creative presentation and original thinking buy you another look, enable you to capture attention in a crowded field, and present new ways for people to engage with your mission.
5. Mission Creep
When a corporation goes beyond its initial product line and area of service, it’s called brand extension. In nonprofits, we call it mission creep, and because charities are in the business of changing the world, their leaders often cannot seem to stop themselves from seeing every need as a call. The result is too many directions, no mission clarity, diffused expertise, and donor confusion.
6. Lone Ranger
I have worked frequently with charities that have almost no real relationships. One organization that comes to mind is the leader in its aid category, raising millions of dollars through television acquisition and direct mail. Although they rely on active churchgoers for their support, they have almost no relationships with church leaders, local churches, or other religious bodies. In the last 15 years, they haven’t pursued any meaningful community contact. All of their energy goes into completing donor transactions. Although this is an extreme example, the tendency is rampant. When organizations do not have authentic relationships, they are vulnerable to economic downturns.
7. Data Dearth
Although many organizations have begun measuring every possible statistic related to fundraising efforts, few have enough data to guide planning, analyze management systems, or redirect underperforming programs or communications. This may be because of the pressure to reduce overhead, or because the entrepreunarial spirit of charity leaders causes them to fly by the seat of their pants, to trust their own (often prescient) instincts.
For the diagnostics and strategic counsel and service that will keep from being a poster child of one of these dangers, check out http://www.jewellconsultancy.com
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By Jim Jewell
In the last year, some two thirds of Americans responded to appeals from charities for support of projects to meet human needs, create new initiatives, advance faith, and reverse wrongs. Nonprofit organizations received $298 billion in donations and were supported by about 64.5 million volunteers.
Unfortunately, the support is fleeting. For every 100 new donors, American nonprofits lost 107. A new report concluded that for every $100 charities raised last year, $100 was lost as donors stopped giving or donated less. Even as the economy flickered to life and giving increased slightly, donor attrition has stagnated charitable progress.
The reasons are clear: Although people are moved to give to specific needs, impulse giving is thin commitment. The long-term loyalty of donors, volunteers and other partners is based on the trust of organizations and their people, the evidence of real change and impact, and the relationships that are developed as part of or after the donor transaction.
The building of trust and loyalty is grounded not in a schedule of follow-up letters or emails, but in the DNA of organizational structure, values, and promises. When organizations build trust and loyalty, it is an accelerant for growth and stronger program impact.
We’ve observed seven disciplines in the organizations that are successful in retaining their friends and partners:
Successful charities establish and over-communicate a buoyant yet clear and reasonable vision, as well as core values that guide decisions and actions. While most organizations at least ‘tip their hat’ at vision and values, and the missions that emit from these (all have become management buzz words in recent years), the successful organizations devote time to developing these directional and differentiating foundations and do not allow their leaders or communicators to marginalize the process or ignore the result.
We love the simplicity and clarity of the Charity Water vision/mission: “bringing clean and safe drinking water to people in developing nations.” Of course many organizations deal with far more complexity than Charity Water, but if they get too far away from this simplicity, they may be doing too many different things.
We also like the improvement that a small charity that is known mostly in the evangelical community, CBMC, has made in bringing clarity to its vision, mission, and values (and featuring these at the top of the Website home page). The organization has struggled to decide what CBMC stands for, but have settled on Christian Business Men’s Connection, explaining in a prominent spot the men-only designation: “Think for a moment about how your wife would react to news that you were meeting regularly with another woman to help her grow in her Christian faith.”
Successful nonprofit leaders and soft hearted and hard headed. Promises they make to themselves and to potential donors, partners and recipients are only those that are rationally defendable. This may seem obvious, but it is a clear delineation between the successful charities and those that flame out quickly.
A leading reason for failure, particularly for small organizations and startups, is that entrepreneurial and earnest founders and leaders are lying to themselves. Not purposely, of course. Their passion and drive simply overwhelm their common sense. They have little or no idea whether assets will be available to them beyond an initial gift or a successful fundraising event. Sometimes there is an enduring base of support; often there is not. Because passion does not necessarily translate into support, it cannot be the basis of promises.
There are many strong organizations that have counted the cost for many years. One example: we’ve worked extensively with Awana Clubs International, which has grown steadily and very carefully over 60 years, negotiating the challenges of national and international growth, dealing with many church denominational groups and theological traditions, and building revenue by franchising programs, selling products, and asking for donations.
When it comes to accountability and reporting on results, there is plenty of room for improvement across the board. We have found that nonprofits don’t have a lot of information available on the impact of their work, and do relatively little reporting on its extent, expansion, and in-program effectiveness. Much more money and energy is put into developing the contents and plan for future fund appeals than on presenting results in thorough and compelling ways.
Some of the most successful charities, such as World Vision, are able to be more complete in reporting to donors because their primary funding mechanism, child sponsorship, requires personal reporting. Other groups are making an extra effort for thorough reporting to be a central practice. One example: a charity called DonorsChoose that lets donors pay for education supplies and other needs listed by schoolteachers on a Website. In exchange for contributions to a teacher of their choice, donors are promised a statement from the teacher describing the difference made by the gift, thank-you letters from students, and photographs of students putting a donor’s money to work.
Regardless of the parameters of the program or the funding methodology, the best charities spend more to report extravagantly on the differences donors and volunteers are making through their contributions, time, and talent. What better way is there to earn trust and loyalty?
The best known, thriving charities search relentlessly for the values, programs, and characteristics that give them unique value–what in the consumer sector is called a value proposition. It is this statement of unique value that explains how these organizations make a difference; it satisfies their constituencies of supporters and partners. In addition, the organization’s value has to be declared at times and in ways that will enhance and broadly communicate the unique characteristics of the organization. Compassion International works hard at this, taking every opportunity to establish the differentiating characteristics that set it apart from its relief and development competitors.
Great communications plans are evident at every point of public contact. But they do not start there. They start in the conference rooms and retreat centers, where teams of leaders gather and hammer out the bedrock of organizational value, and where the central messages of the charity are determined. They continue in the research and planning that produces sound direction, and in the creative hot houses that germinate compelling creative. What follows is truthful, compelling, flexible, and current communications that tell stories and capture the drama of human progress and struggle.
And today, ascendant nonprofits are those that recognize every vehicle—old, new and next—must be utilized to reach major groups, but all communications strategies must have the online component as the hub of the wheel. One example is Invisible Children which, since 2004, has made a habit of using media in new ways—dramatic documentary films in colleges, the Web phenomenon Kony 2012—to focus the world’s attention on the atrocities of the Lord’s Resistance Army in northern Uganda.
The huge charitable dependence on mass, direct-response fundraising has limited personal touch. The organizations that survive and grow through national crises and economic recession complement their direct response efforts with programs that include small events and meetings, local celebrations, and other efforts to increase personal communication. Charities can raise a lot of money for their work as a result of strong professional fundraising campaigns, but they won’t be great, deeply rooted organizations without the personal touch and relationships that require leaders and representatives to climb out of the ivory towers of charity and into the halls and living rooms and coffee shops, churches, and banquet halls of American cities and towns. One example of this: Although it is one of the largest charitable organizations in the world, The Salvation Army puts itself in a position to make personal contacts and raise its visibility as it raises funds, notably through its Christmas kettles and its thrift stores.
The final step for great trust-builders is actually a continuous process: the constant research, evaluation and measurement that precedes, interweaves, and follows every major move. Metrics are essential to track the perceived value of programs and communications, donor retention, public opinion, and relevant societal and industry trends.
Certainly many organizations are now routinely testing channels, audiences, vehicles, methods, and return on every investment. We are particularly impressed with Charity Water (again) because of their decision and effort to measure and report on their adherence to one of their core values or operating principles: that they will raise private and foundation monies for all overhead so that 100 percent of public donations go to programs to provide clean water.
Successful charities have proven that it is attention to these 7 disciplines that will most reliably build the trust and loyalty that fuels program growth and organizational effectiveness.
World Vision, the giant international Christian relief and development organization, made two announcements last week. I was shocked and disappointed by both. The nature of my alarm was somewhat different than what I’m reading among my friends who share my evangelical Christian faith, and among others who have reacted to the announcements.
World Vision announced on March 24 through an exclusive interview with Christianity Today that it had amended its personnel policy to allow the hiring of gay Christians who were in legal same sex marriages. They did this, World Vision president Richard Stearns said, not to establish a theological position on homosexuality or same sex marriage, but to be reflective of some Christian denominations that had shifted to more permissive positions on homosexuality.
Two days later, through the same publication, Stearns announced that the organization had totally reversed its decision after virulent backlash from evangelical leaders.
I headed World Vision U.S.’s public relations department for nearly five years, leaving in 1983, and have been a management and public relations consultant for 36 years, primarily in the evangelical sector. I haven’t provided public relations counsel to World Vision for three decades, but from my perspective as a WV alumnus and a PR practitioner, I see World Vision’s handling of this self-made crisis as a public relations debacle of stunning proportions.
This has nothing to do with my own view on the interface of Christian teaching and sexual orientation and practice. There is plenty to say about this, but I am not most qualified to present the varied theological positions. I have worked through enough public relations crises, however, to have an opinion on potential causes for this mishandling of very public statements by a strong and important organization. I see at least six:
- Detached Retina. World Vision totally lost view of its core mission and the potential of endangering the aid it provides for millions of people around the world, when it decided to publicize its personnel policy change. There was no reason for a public announcement of a change in its hiring practice or to clarify its position on the accepted conduct of its employees. It did so, it appears, to establish a leadership position among Christian organizations on an issue not central to its mission around the world. Whether you support its (short lived) decision to hire gay Christians or its reversal, World Vision was—Don Quixote like—tilting at windmills where it should not have been.
- Presbyopia. With age, many of us lose our ability to see things close up. Called presbyopia, it’s a good word for WV’s vision problem–not seeing those closest to it, the core of evangelical Christians that have and still do constitute an overwhelming portion of its support. It is nearly unbelievable that Stearns and WV leaders were surprised by the storm of protest to its first decision by Christian leaders and the thousands of child sponsors that revoked support within 48 hours. There clearly were not adequate discussions or research with the customer base. Stearns admitted this when he announced the reversal: “We did inadequate consultation with our supporters. If I could have a do-over on one thing, I would have done much more consultation with Christian leaders.” But by hearing from supporters and leaders only after the first decision, it left World Vision looking not like a wise industry leader that consults its constituents before making important decisions, but as a weak leadership team that caved when criticized.
- Double Vision: World Vision wisely does not take sides on theological issues such as baptism, charismatic expression, divorce and remarriage, or eschatology, which it leaves to the churches. But World Vision is and is known as an evangelical institution and part of the universal Church. As such it draws lines, which it was clear about in its statements this week, requiring that employees be faithful followers of Jesus Christ. It was unfocused thinking to put an issue of stunning social importance in the lap of the church while taking a position that was contrary to a very high percentage of the very churches whose members support the organization. Additionally, Christian institutions (not just churches) must define truth not by keeping everyone happy, but through biblical study, revelation, and conviction.
- Mistaken Identity: In making its case for a personnel policy change, World Vision said it allowed the organization “to treat all of our employees the same way: abstinence outside of marriage, and fidelity within marriage”—giving state-legalized same-sex marriage the same standing as the marriage of man and a woman. To identify moral clarity through appeal to state law is a perilous move, one that—of course—held little sway with those who believe homosexual conduct is contrary to scripture and legal sanction of same-sex marriage an abomination. The decision appeared to be cleared by legal counsel but not Christian counsel.
- Distorted Selfie. What is the distinct character of a Christian organization? It’s defined by beliefs, mission, and shared Christian values. Trust is broken when an organization violates these values that it shares with its recipients, its customers/donors, its partners, and its own history. It will take years for World Vision to rebuild that trust.
- Myopia. While I do not know World Vision’s current leaders well enough to discern how much they have been influenced by the political and social environment in Seattle and the state of Washington, the blind spot demonstrated this week suggests there has been an impact. Otherwise, it is difficult to understand the first decision. I’m afraid World Vision could not see beyond the Cascades, their eyes focused—if even unintentionally–on local preferences, politics, and the social environment in their home state, and not seeing national and international positions in the evangelical community that came surging into their view when they publicized their short-lived new personnel policy.
The sad part of such public relations mishandling is that an organization emerges with its reputation severely damaged. In this case, those in the heart and the right of the evangelical community have been given ammunition to doubt the orthodoxy of World Vision and its leaders. The bleeding was stopped but the scar will be unsightly for some time. Then with a reversal, those who support a stronger embrace of homosexuals by the church felt betrayed by a World Vision that – it appears to them—capitulated under the strong arm of fundamentalism.
I think of the president of World Vision when I was part of the team, esteemed evangelical leader Ted W. Engstrom, who passed away a couple of years ago. I can see TWE writing memos in heaven on the dangers of compromise, but also on the mismanagement of the public trust.
May World Vision draw from his wisdom and example of clear leadership.
In a simple visit to a gelato shop this weekend, I—knowingly or unknowingly—made value statements about risk taking, friendship, childhood joy, keeping promises, and childhood diligence. While we all can recognize that the overtly important choices of life are based on values, the everyday choices of life are also informed by our priorities and values. We know what we value because we spend our money, our energy, and our time on these things.
The same is true in business, including the sector that consumes a good deal of my attention: nonprofit business. Read more about choosing gelato and the value of values.
“If there is no vision,” a 1599 version of Proverbs 29:18 reads, “the people decay.” Without a vision, missions can stagnate or waste away. A vision is an answer to the question: “What can and should we accomplish?”
My post on the NPOutlook blog looks at the importance of a vision statement to guide and energize actions from the present forward. We’ve looked at many organizational vision statements. Some are great; many are terrible. Take a look; for now, we’ll let you decide.
Trust has been in decline for many years. I wrote about the decline in public trust in 2010, and just now on the NPOutlook Blog. With charities trying to recover–like so many others–from the economic carnage of the last five years, regaining donor trust has never been more important. In a corporate setting, it gets tricky:
To many leaders, trust sounds like soft and cuddly business jargon. Treated seriously, that couldn’t be further from the truth.
Trust is not a soft virtue. Gaining and keeping trust is tough, gritty, engaged, in-your-face work. Listening hard. Making difficult choices. Fortitude, sacrifice, sweat and tears are often required to make and to deliver on promises and to be unfailingly truthful.