First published in PEN February 2020
I’m here in Antarctica, and have visited the grave site of one of the most famous leaders in history: Ernest Shackleton. The famed polar explorer was renowned for surviving a horrendous situation, and leading the men directly under his watch to safety. It’s such a compelling story, that I had to come to the Antarctic after reading in depth about it for years!
The bleeding disorder community is filled with admirable leaders, too. Though I often say that no one is a born leader, leadership can be birthed. In our community, leadership arose from the cataclysmic devastation when HIV was discovered in the blood supply in the 1980s and infected about half of our community. This horrific event birthed many leaders, whose legacies stand today.
When we think of those leaders—like Corey Dubin, Dana Kuhn, Val Bias, Jeanne White-Ginder, and Louise Ray—we think of certain leadership qualities: vision, authority, courage, commitment. These are leaders who made history and secured a safer future for us all.
Yet today, when you ask regular moms and dads and hemophilia patients about leadership, a slightly different picture emerges, highlighting different qualities. It helps to know more about what our community members seek today in leadership—who they admire, and what they expect from the leadership of tomorrow.
Types of Leadership
There are many types of leadership, but I usually peg leaders as one of three types: positional, situational, and transformational. In a nutshell, positional leaders are usually elected, appointed, or inherited: think president, CEO, executive director, chief, even king or queen. Situational leaders may or may not be positional leaders, but they rise to the forefront when a problem, event, or situation calls for a leader. Think first responder, rescuer, or anyone who steps forward to take action, like Lech Walesa of Poland in 1980, or US Army Major Hugh Thompson, Jr., during the Vietnam War. Or even Ripley in Alien!
Transformational leaders influence a community, industry, group, or era to make massive and lasting changes: think Jesus, Gandhi, Walt Disney, or Steve Jobs. When asked about leaders, people often name leaders who fall into those three categories. Characteristics of these types of leaders? Powerful, authoritative, visionary, action-oriented, decisive, committed, communicative, innovative, influential, even charismatic. Do bleeding disorder families see leadership the same way?
The Softer Side of Leadership
Rather than describe leaders in our community as figureheads with power and influence, parents and patients associate softer qualities with leaders these days. These softer qualities include traits that make the “followers,” or beneficiaries of leadership, feel more secure and feel their needs are being met. We polled parents and patients on Facebook to see what leadership qualities they look for most in the bleeding disorder community. And top among these qualities is listening.
Eva replied, “For me, a good quality of leadership is to have an ear to listen, to communicate. To protect their member.” Krissy agreed. “Leadership is the ability to not just listen but truly hear you and your concerns. A leader inspires others and is someone who advocates passionately.”
Dr. Anupama Pattiyeri of India added that a leader must be “a patient listener and motivator—someone who focuses on solutions and not on problems alone.” Katelyn and Alicia both put listening as their first sign of good leadership.
Wayne remarked that leadership means “the ability to listen before deciding. Having ties to the community and leading with integrity, honesty and compassion.” Karla agreed; for her, leadership means “commitment to our community combined with a personal connection.”
Tina noted that listening, combined with empathy, insight, and integrity, gives a leader the ability to understand life from a patient’s or caregiver’s point of view; the ability to understand important values of the community; and “the strength to stand up for those values.” In other words, parents and patients view the traditional forms of leadership as less important than “servant” leadership.
The style of leadership parents and patients most often mentioned is known as servant leadership. Servant leadership puts people’s needs first. A leader must understand the needs of the followers or constituents, be there with them, even suffer with them. Indeed, a trait of servant leadership is compassion, which means to suffer or feel alongside someone. It follows that traits of servant leaders include listening, empathy, stewardship, awareness, healing, commitment, and community-building. Historically, servant leaders have been either positional, situational, or transformational leaders too, but have always put their people’s needs first.
Ray agreed. “To be in service to the people you are leading—servant leadership” explains the style of leadership that works best today in our community.
Who are the servant leaders in the bleeding disorder community? Kathe cited her HTC physicians: “Both physicians are excellent leaders…They always take time to explain to patients and integrate therapies into everyday life. I am a better nurse for knowing them.” Rayna mentioned her doctor, currently at St. Jude’s, “for leading a whole generation of patients through recombinant therapies by studying the medicine and checking the facts. All the while he has a wonderful bedside manner to both parents and children.”
Kelly, who was nominated by respondents as a servant leader herself, listed integrity, compassion, and honesty as important qualities for our community leaders. These characteristics don’t require a leader to be in a position of authority.
But positional leaders—those in authority—can be servant leaders as well. Christal nominated a couple who started a chapter in her state, and do so much to help the underserved members of our community.
Likewise, Tiffany recommended Sue Martin, executive director of Hemophilia of South Carolina, as a servant leader. “She gives our organization her heart and soul. She has turned our local chapter into a source of hope, progression and compassion for our bleeding disorders community. And most importantly she drives people to educate themselves on advocacy, so we can advocate strongly and effectively for our children, and teach them how to become strong advocates for themselves.”
Ray warned that as great as servant leaders are, they must ensure that they are not indispensable. In other words, leaders must develop other leaders.
The great British wartime leader Winston Churchill was called the “Old Lion.” I think of this when I think of the top leaders in our community who fought our war with HIV, and are now in their 60s. Mentoring a new generation of lions, then, is vital. Some mentoring happens at the top, with youth leadership programs from National Hemophilia Foundation (NHF), but mentoring can occur anywhere by any of our servant leaders.
Two mothers mentioned their own sons as servant leaders who mentor younger followers. One mentioned that her son never missed a year of summer camp since age seven, and even after moving out of state for a while, came back to work as a counselor in summers. Servant leadership by example, combined with positional leadership, is powerful!
Kimberly nominated her son, who she believes has these leadership qualities, so important in servant leaders: integrity, honesty, loyalty, empathy, compassion, inspiration—and mentoring.
Finally, Lisa made a poignant suggestion: “I’d like to nominate all of the ‘silent leaders’…parents who take the time, often in private, to welcome new members, offer our help, guidance, experience as parents with a baby with a bleeding disorder…Often done behind the scenes, but very helpful and appreciated nonetheless.”
Sometimes the greatest leaders are the ones without the fanfare, tweets, photo ops, and popular achievements. They are the servant leaders who quietly and modestly, powerfully and permanently, change the world day by day, child by child. They are all of you—parents, patients, doctors, nurses—who dedicate their lives and careers to the bleeding disorder community.