The Rose of Sharon: A Tribute to Sharon Maxwell Henkel

By Morénike Giwa Onaiwu, Lionel Hillard, and Paul Klees (Former) GCAB Co-Chairs

“As I grew up, I had to decide: Would I become a victim, or become independent? I chose the latter...I want the world to recognize me for who I am - a woman first, then a person wearing a brace, and finally, someone living with AIDS...Polio gave me my freedom, and I will not give it up to AIDS.” –Sharon Maxwell, 2008

Sharon Maxwell Henkel was many things to many people. A cherished friend. A lifelong disability advocate. An HIV activist. A wife. A mentor. Acommunity educator. A woman’s rights enthusiast. A champion for diversity. A leader. A colleague. An inspiration. She was—is —loved and admired by many people around the globe; as such, there are innumerable positive statements from the thousands of people whose lives Sharon has touched that we could have chosen to begin this article with. But we felt that it was best to lead with her own words, for one thing that Sharon truly cherished was for everyone to be able to have their own voice. She broke down barriers in order for people, including the three of us who are writing this piece, to be able to be heard—and valued. So today, while we honor Sharon’s memory, we admonish you to also follow her example. Find—and use—your voice, and live your life to the fullest by your own terms.

Sharon had a passion for serving others; it was her life’s mission. She was active as a leader for HIV clinical trials within the HIV/AIDS Network Coordination (HANC), and the AIDS Clinical Trials Group (ACTG). Sharon Co-Chaired the Women’s HIV Research Collaborative (WHRC) and served two terms as Co-Chair of the Global Community Advisory Board (GCAB). A few additional roles she has held in her two decades of service include ACTG representative to the multi-network group Community Partners, Working Group Chair of the GCAB Subcommittee, Community Scientific Subcommittee (CSS) representative to the ACTG Performance Evaluation Committee, and as a community liaison to the Women’s Health Internetwork Scientific Committee, which included researchers and other affiliates from both the ACTG and the International Maternal Pediatric Adolescent AIDS Clinical Trials Group IMPAACT). Sharon also worked with AIDS Foundation Chicago, Illinois Department of Health, and her local Ryan White program.

Sharon worked diligently to advocate for the rights of people living with HIV, particularly underrepresented individuals such as women, people of color, transgender individuals, rural communities, and older individuals. She was the epitome of a mentor and an advocate, and she was a wealth of information! If there was something she didn’t know, she would search for the answer and get back to you. Sharon took her responsibilities seriously. She would place weekly 90-minute conference calls during chemotherapy and send emails from her hospital bed and from therapy waiting rooms. We could all learn many lessons on how to fulfill our duties from Sharon’s example. As busy as she was with her many community leadership roles, her family and friends, and her health issues, she worked hard to be an active part of any group she was part of.

If you did not have the pleasure of knowing Sharon, you truly missed out on a remarkable human being. She was loving, but tough, with a nature as fiery and bright as her hair! But though Sharon did not hold her tongue, she was kind, never cruel. There are few people in this world who share her compassion, her zeal, her intelligence, her honesty, her inner and outer beauty, her work ethic, her resilience. You could call, text, or e-mail Sharon anytime—day or night—and she would be willing to give of her time and knowledge. She deeply cared for people and respected them. Once you had befriended Sharon, you had a true and loyal friend for life.

Sharon was a woman who refused to allow life’s difficulties to rob her of her freedom and her purpose. She understood that challenges are real and must be addressed, but she rejected the notion that our struggles render us incapable of being able to have autonomy, dignity, and respect. Sharon believed that all people have value, period, and wanted us all to realize that as well, regardless of country of origin, gender, serostatus, religion, skin color, age, ability, sexual orientation, socioeconomic status, etc. This feisty, white, disabled, straight, redheaded, older woman living with HIV in rural America knew more about—and earnestly appreciated—acceptance, inclusion, diversity, and self-determination than most people from large cities with advanced degrees. My God, how we already miss her so much. There will never be another Sharon Maxwell Henkel. We grieve her departure, but rejoice that she is now at rest with no more pain.

There is a Nigerian proverb that states, “Hold a true friend with both hands.” Sharon was a true friend, so we admonish you to hold fast to her memory with both hands—and never let go. Not only will she live on in our hearts, she will live on through the annual Sharon Maxwell Community Impact Award, which will be awarded each year by ACTG community members to fellow members of the community who contribute to local, national, and global HIV advocacy in areas such as policy, HIV reproductive justice, anti-stigma, housing, HIV criminalization, community empowerment, and promoting awareness and education. Sharon, we love you and you shall never be forgotten.

Memorials may be made to:

Clinton County Humane Society
1301 Apple Lane
Breese, IL 62230
Telephone: 618.526.4500