On April 3, 2012, the Globe and Mail published an abbreviated version of an interview with Ilana Landsberg-Lewis, Executive Director of the Stephen Lewis Foundation. Here is a full transcript of her original answers to the written questions that were submitted to her.
1. What is the cause?
Gender equality and turning the tide of HIV and AIDS in Africa – the extraordinary resilience, dignity and thoughtful response at the grassroots in Africa. Examples of this are: Home-based care workers, overwhelmingly HIV-positive women, work as ‘volunteers’, determined to assist their communities – and have become the health care response to AIDS at the community level. In 2010 there were approximately 1.9 million new HIV infections in sub-Saharan Africa – the work of these women is no small feat. Community organizations help grieving and bereft children heal from the loss of their parents, go to school, have a precious meal a day, and assist child-headed households. With over 14 million children who have lost one or both children to AIDS in sub-Saharan Africa, this is absolutely essential – after all, they are the generation that must lead Africa out of the AIDS pandemic. Approximately 3.4 million children under 15 were living with HIV in 2010, and grassroots organizations use art, counselling, nutrition, and loving support to help them deal with the virus, educate their families in how to care for them, and access essential medicines.
2. How do you describe yourself?
At the heart of things, I have become someone who strives to keep the buffer between the injustices in the world around us and the outrage, sadness and anger about them as thin as possible. I strive to be a person who lives without turning my eyes away for a moment, not from social injustice or from the extraordinary triumphs of the human spirit over adversity. Being a proud mama of two young boys is a newer description of myself, but it certainly informs my life and passion, and my unapologetic feminism and my belief in tikun olam, which comes from an activist Jewish upbringing and being in a lesbian family.
3. What specific moment/incident made you commit to this cause?
I was on a family vacation with my parents and my newborn son – their first grandchild. At moments, my father would revel in the joy of a new grandson, but in between moments of familial closeness, I watched him drift away, clearly reeling from what he was seeing as the UN Envoy for AIDS in Africa. He was almost haunted, unable to shake – or unwilling to let go of – the images and struggles to which he was witness: the ravages of AIDS. In a state of sadness and outrage, he started to talk about the desire to do more, and the idea of starting a foundation together – to do something modest but heartfelt – was born.
4. What was your very first step?
In 2002, I was on maternity leave from my job as the CEDAW Advisor (UN Convention on the Elimination of All Forms of Discrimination against Women) at UNIFEM in New York. I made the decision to leave the UN after eight fascinating years working on women’s rights with inspiring women’s groups in developing countries, and return to Toronto to start the Foundation with my father. In a little house in downtown Toronto, I began the Foundation at the kitchen table, with a computer and an old donated photocopier, and in March of 2003 we received charitable status. In January of that year, Stephanie Nolen of the Globe and Mail wrote a powerful article about AIDS in Africa and Stephen’s role as the UN Envoy there. Within days the mail carrier knocked at my door and asked if Stephen Lewis lived here and if he was running for office again! It turned out that he had a bag of mail in his truck, addressed to Stephen at my address, with moving letters and cheques from people across the country wanting to contribute! The Foundation has grown leaps and bounds since then: it has invested more than $54 million in its partnerships with African community-based organizations in the 15 countries hardest hit by the AIDS pandemic, and has over 20 committed and passionate staff!
5. Who is your hero?
If I'm candid without being self-conscious or maudlin, my parents are my heroes. In every way they both exemplify lives lived in a way to which I aspire. There was never a separation between who they were at home and who they were in their more public lives. Whether it was my mum supporting me in my indignation at a sexist and demeaning orientation for girls at my downtown Toronto high school – outraged and warm, loving and tough, she encouraged me and so many others to find our voice and stand up for our rights – or my father, agreeing to take me with him on a campaign, always generous and loving, holding my hand while he spoke in committee rooms across the province, with a quick wit and a tireless passion for improving the human condition.
6. How do you describe success in terms of the cause?
Success is in deeply human terms. Children who are cared for and feel some comfort and love before they die, grandmothers who have succour and encouragement from support groups and grief counselling, mothers who survive and thrive after receiving ARVs and recover enough from HIV-related illnesses to laugh and play with their children again, funerals that have flowers and a coffin for families that are grieving and cannot afford them, children orphaned by AIDS in school and eating a meal a day, receiving music therapy and love. And then there is the changing Canadian understanding of how thoughtful and intelligent the people are at the frontlines of the AIDS pandemic. They stand in solidarity with them, and give support out of mutuality and respect, not pity and charity.
7. How can money help you to accomplish your goal?
Every dollar helps. There are many dollars that have to come together however; just buying a goat isn't enough. Not if a child has to stay home from school to fetch water for the goat, not if the roof is leaking and the family has to stand in the corner at night to stay dry, not if there is no money for the vet when the goat gets sick. $20 can buy a pair of shoes and paper and pens for school, but if a child doesn't have grief counselling to repair a fractured life from the loss of parents, or food to eat, or safety from sexual predation on the way to school, or kerosene lamps by which to do homework… that one item just isn't enough. We have to stop thinking of support this way – what I call the commodification of philanthropy. It's not how our lives work either – everything is connected, and community projects need to be able to determine their own priorities. Which change – often! Sometimes they are for food, sometimes for grief support, sometimes for school fees. We can’t continue to think of our support as 'buying' something – instead we must see it as contributing to a change in living circumstances, the shoring up of an emotional life, and all the things that make a life whole and happy and able to survive the ravages of AIDS. The reality is that every dollar helps. Many families and children live on a few dollars a month, but it takes the contributions of many to provide the consistent, holistic and varied forms of support needed for whole families to maintain a meaningful quality of life. Just as it does here at home.
8. What discourages you?
In terms of the pandemic, nothing discourages me. I see African communities refusing to give up on their future, their children. They fight 'discouragement' every single day, right at the brink of the struggle for survival. So I refuse to be discouraged when they are so breathtakingly courageous. Having said that, I AM discouraged by the international retraction of funds from the struggle to overcome the impact of AIDS in Africa. How can it be that people at the grassroots are working so hard, and with such ingenuity and effectiveness, and governments the world over are not there to support their magnificent and transformative efforts?
9. What have you sacrificed or lost in pursuing your passion?
Well, some sleep, perhaps! The ability to ‘switch off.‘ Sometimes when it’s been a hard day – another story about a project losing three children in one day in South Africa, the loss to AIDS of a leader of a wonderful project working with people living with HIV and AIDS in Kenya – I marvel at the courage and resilience of the people with whom we work in Africa, and focus hard on the hope that they generate and articulate to reconcile the damned unfairness of it all.
10. Has there ever been a time or moment when you thought this cause might not take off?
Initially, I think I didn't understand the extent to which the crisis of AIDS in Africa resonated for Canadians. This cause can't 'take off' or 'not take off.’ There are too many real lives at stake, too many remarkable people living with HIV and AIDS – women who lead innovative community programmes around HIV and AIDS, strong and indomitable grandmothers who are the lynch pins for their families of orphaned kids. This is too real and urgent to flounder. But did I think that Canadians would respond to the Foundation as they did? No, I admit, the depth of caring and response surpassed anything I imagined, and has been thrilling and heartwarming.
11. What keeps you going?
Three things keep me going: Every day I learn something new from the projects with whom we work. For instance, early on, we learned that just getting orphaned children into school wasn’t enough – organizations quickly identified grief counselling and food security as essential ingredients for these children to thrive and stay in school. They told us that sanitary napkins were needed for young girls who otherwise would stay home, and that familial support was required to ensure that girls weren’t yanked out of school as soon as a family member became sick or a grandmother needed help to gather water and food. There isn't a day that goes by in which I don't deepen my respect for their work and expertise about how to manage, subdue and beat back AIDS. The faces of the people I've met, old and young, keep me going. Second, the constant revelation that there are so many of us who care keeps me going. From Canadian grandmothers to youth, to family foundations and union locals – the outpouring and commitment absolutely keeps me going. And finally, outrage. I simply cannot understand or accept that the world stands by and watches this brutal carnage and continues to betray Africans over and over again. Individuals here 'get it', but the international community seems to be content to fall short, and will cost lives. Outrage, and the determination in African communities to overcome and in Canadian communities to stand with them keep me going! Finally, I have remarkable colleagues at the Foundation. They're so committed, so compassionate, and so deeply appreciate the dignity and intelligence of the African response. It touches me deeply.
12. What has been your "a-ha" moment?
There have been many, but one of the most powerful was watching my mother with my first son as a baby. I was learning from the community organizations about the remarkable role of grandmothers in the unfolding pandemic – caring for so many orphaned grandchildren, having buried their adult children. And then I watched the overwhelming adoration of my mother for my son, and I realized that every grandmother in Canada would understand the depth of grief of African grandmothers, losing their adult children to AIDS and having to step in to care for two, three, as many as eight grieving grandchildren. Did I think the Grandmothers to Grandmothers Campaign would result in over 250 groups across the country? Never! But I'm eternally grateful for that moment when I realized the powerful life force of grandmother-love!
13. What is next?
There are so many more stories to be told, and so many organizations with whom we want to partner. I was recently visiting a project in Tanzania – a wonderful group of HIV-positive women, raising awareness in their community, breaking stigma around AIDS, running income generation and support groups for women living with HIV and AIDS. They had made so much progress in empowering the women in the community, that some of the men wanted to join the groups. So a new group has emerged – a mixed group of predominantly young men and women. And it’s “ready to fly”, as they told me. They want to bring the men along with them – educate them about testing and counselling, talking about sexuality and safe sex, and respecting the rights of the women in their lives. But it takes money – for meetings, for outreach workers, for materials, for income-generation support for people living with HIV and AIDS – and it’s simply not available. $25,000 would enable this group to hold awareness-raising workshops, grief counselling for men and women, and more – it would transform lives, households and gender relations in the community, and potentially create a model of community engagement that could be replicated elsewhere. They have already come together without resources, determined to make a start, and they were passionate and inspiring in their urgency to ‘take off’.
What's next is to find ever-more ways to connect with Canadians and to amplify the voices and realities of the real African experts on AIDS – the people wrestling every day at the frontlines of the pandemic. It's a Tribunal on older women's rights in the context of AIDS in Africa. It's visits from African grandmothers so they can speak for themselves. It's the Arts Fund – working with Canadian artists who understand the remarkable work of African communities using the arts in healing and hope around the pandemic. It's making those critical connections between people here and in Africa that are mutually respectful and dignified and full of determined hope for the future.
14. What celebrity/individual would you most like to see embrace your cause, and why?
If limited to one, I would choose President Obama. If he ended the flat-lining of the Presidential Programme for AIDS in Africa (PEPFAR) and resurrected meaningful support to the Global Fund for AIDS, Tuberculosis and Malaria, it would have a powerful impact on millions of lives. And if not? There are hundreds of thousands of individuals like the grandmothers of the Grandmothers' Campaign, young people, artists and people of conscience across Canada, who are moving heaven and earth to lend support to the Africans who will continue to work with tenacity until the ravages of AIDS becomes history. I know I will.
Questions set by Farah Mohamed for the Globe and Mail.