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Song of the Soul
Stories of Hospice in South Africa
Director’s Statement - Janet S. Parrott

janet parrottThe South African Consul General from Chicago came to see a cut of the film. After viewing it she asked me: “Ubuntu. Do you know what Ubuntu means?”
“No, I don’t.”
“It’s a philosophy that Nelson Mandela and others talk about. It’s means: you are not a person without other people. It means 'Humanity to others.' Your movie shows Ubuntu.”

That was a remarkable moment for me. There was now a word attached to what I saw, to what I was trying to convey, to what I wanted my audience to see. “I want to give you something and this is what I have.” She handed me her friendship pin with the South African flag and the American flag back to back. She was the first of many South Africans to tell me about Ubuntu.

For several years I directed and produced video profiles for a televised event publicly recognizing extraordinary women in Columbus, Ohio. It was gratifying to meet women in my community devoting their energies to leadership and social issues. Several years ago after the annual event, I crossed in front of the stage and Cathe Kobacker, an honoree -a hospice volunteer of over 25 years - was descending the steps. I had just finished her video profile two days before celebrating her social activism and her passion for quality end-of-life care for those with life-limiting illness.

I congratulated her for her honor, and we began to talk about hospice, HIV/AIDS, personal loss, and how people care for the world. Something in that moment clicked and Cathe said, “Now here’s an idea, - let’s take some women, go to South Africa and talk to the women I know in hospice care.” I agreed that it would be interesting to go and listen and learn about what they are doing in response to the HIV/AIDS pandemic. She then removed a pin from her lapel, explaining that a patient at Soweto Hospice had made, it and handed it to me. It was a red ribbon along with a South African flag and an American flag meticulously crafted out of beads attached to a safety pin. At that moment it became my contract with Cathe and the people of the South African hospices I was about to meet. It became my promise to share their stories.

After a year of planning, Cathe, and I and five other American women including, a hospice nurse, a hospice transition counselor, a child nutrition expert, a doctoral student studying international aid and a university professor along with a film crew went to South Africa to listen, learn and experience an effective model of hospice and palliative care. This was the first of two trips.
We visited Good Shepherd Hospice in Middelburg, Banakekeleni in Alexandra Township, Soweto Hospice and more, having conversations with nurses, caregivers, patients and families. They became our partners, exchanging ideas and sharing what they do everyday. It was very humbling to be in the presence of such dignity and grace. They taught me what it means to be human.

South Africa is first-world in many ways but there also exists high unemployment and widespread poverty. It’s reported to be the country with the largest epidemic of people living with HIV/AIDS at 5.6 million in 2008 (ActuarialSociety.org.za October 2008). One nurse we met had a hundred patients. The caregivers had anywhere from eight to fifteen patients they attended to, sometimes daily. But the care we saw was extraordinary. Cathe once observed that it was “high touch, low tech,” an effective model for dealing with high numbers of sick people with respect and dignity. We visited people who, in many cases, were quite ill. It was difficult to feel that we were not imposing. But everywhere we went people were open and willing to share. As one home care nurse said, “…we want the world out there to know we are doing the best we can to get our community to a place of comfort, where people can be helped.”

The people of South African hospices told us their stories in their own words, through their comments and in their actions. The American women on the trip became listeners and learners. This is not a story of one individual or one caregiver or one patient. It’s an expanded definition of hospice as it effectively responds to the needs of communities; a snap-shot of people’s lives, a snap-shot of South African hospice, a snap-shot of Ubuntu, of the philosophy of “I am what I am because of who we all are.”