As a nurse, I have been working in HIV for 19 years and I am still moved with compassion whenever I am engaged in care or conversation with an individual who has been living with HIV/AIDS, especially older adults. The most memorable event for me was finding a small cluster of older women who were living in isolation but were willing to come together to form a support group. It is not uncommon for older individuals living with HIV to keep their diagnosis a secret from their friends and families, often due to the double stigma of ageism and having a sexually transmitted disease, currently without a known cure.
Meeting this group of women inspired me to look for an HIV support group for older women. Finding none, we joined together and named the group, “Older Women Embracing Life, or “OWEL” (pronounced “O-well”). Their attitude was: So I am older, and yes, I have HIV, but oh well, I am still living with this challenge and living well. Our OWEL monthly meetings over the past six years have motivated, inspired, educated and challenged other senior ladies dealing with HIV and comorbidities, to take care of themselves and to live a full life in spite of an HIV diagnosis…and OWEL has taught them how to live well!
I happened to watch Oprah Winfrey’s memorable Legends Ball in 2006, in which she brought to television her personal archival footage from the three-day, once-in-a-lifetime celebration honoring 25 legendary women in the fields of art, entertainment and civil rights. It was overwhelming. These were phenomenal, older women that I admired myself… to name a few; Maya Angelou, Cecily Tyson and Coretta Scott King. They all made such important contributions, and to see the younger ones who may not have ever had an opportunity to meet them, never had a chance to see them perform, now actually able to hug them and to say “I can be here because of you.” Oprah made this statement which was an “aha” moment for me:
“These women, who have been meaningful to so many of us over the years, are legends who have been magnificent in their pioneering and advancing of African American women. It is because of their steps that our journey has no boundaries.”
They had that special luncheon and Oprah wanted to give them the best thing she could think of — diamonds! — and it still wasn’t enough to demonstrate her appreciation.
Watching the Legends Ball made me think of the women of OWEL who were living with HIV/AIDS in their senior years and were able to strengthen one another to take a leap of faith and move forward in spite of a stigmatizing diagnosis, and to walk with such dignity. Many of these women were able to disclose for the first time in their senior years and share the story of their journey with HIV and aging comorbidities. Some of the women are able to work as well as use their special gifts and talents to encourage other women in the areas of prevention and awareness. These wonderful seasoned women, having lived with HIV for many years, were mentoring and inspiring others to “make it.” Watching the Legends Ball made me want to do something similar for them.
Our first Legends and Young’uns: Phenomenal Women Living Longer with the Challenge of HIV conference took place in October 2006. “Legends” were described as women who were living with HIV for 15 years or more and the “Young’uns” were younger women who were perinatally infected or had acquired HIV for a shorter period of time. Nurses and social workers came together as hostesses. This full day conference provided HIV education, breakout sessions, surprises, great speakers and delicious food.
We had copies of AIDS activist Pearl Cleage’s book of poems, We Speak Your Names: A Celebration, which the Young’uns had read passages from during Oprah’s Legends Ball. Every attendee at our Legends and Young’uns received a copy of the book, and the nurses and social workers read a special excerpt in honor of all the Legends and Young’uns.
The oldest attendee at our first Legends conference was 97 years old. This phenomenal woman was diagnosed at 94 years of age. She was also a member of the dynamic panel of women who shared their stories of living with HIV.
In addition to Legends and Young’ins, OWEL has developed and facilitated a variety of community activities including the annual “Testing for Turkeys” near Thanksgiving, at which time community constituents come in to be tested for HIV and receive a nice box lunch and a frozen turkey; HIV education/testing in senior centers during National HIV/AIDS and Aging Awareness Day; and testing/education at other times and locations throughout the year.
And needless to say, every October for the past six years we have sponsored Legends and Young’uns: Phenomenal Women Living Longer with the Challenge of HIV. This has been one of the most auspicious events ever embarked upon by OWEL — an event that we will continue to hold yearly until we become, as Hilary Clinton said, “An AIDS free generation.”
Learn more about OWEL’s Legends and Young’uns conference collaborating partners, including: ACRIA, Light Health and Wellness, SAMHSA, Sisters Together and Reaching, Southern AIDS Living Quilt, and Women Accepting Responsibility.
Watch a tribute to Edith Santana, who was 97 years old when she spoke at the first Legends conference.
Read more about the high rates of HIV/AIDS among older adults in the Baltimore/Washington area in an article that quotes OWEL’s Carolyn Massey.
Watch a brief video by Johns Hopkins Public Health on living with HIV, featuring OWEL’s Executive Director, Marilyn Burnett.
Provider failure to actively support older women’s sexual health is a contributing factor to rising infection rates among these women; what about the sexual health of older women who are HIV-positive? Read Bethsheba Johnson’s piece for The Body Pro on “HIV and Sexual Function in Women Over 50.”