World AIDS Day 2009 – Telling Our Stories
I’d like to extend a two-part challenge to everyone who reads this blog to pass it along to at least five people you know, whose lives have been affected by HIV/AIDS. And the second part is to comment on the blog, sharing your personal story… how has AIDS affected you? What are you hopes for the future? Whose lives were cut short, but remain forever etched in your memories and hearts?
Part of the Vancouver Peace Summit, which preceded the launch of the Charter for Compassion, included some wonderful discussion and guest speakers talks about “telling our stories” and “listening to the stories of others”. Compassion is organically generated the moment we begin to listen with open minds and open hearts to the stories of another.
We live in a time, twenty-eight years into this pandemic, when women account for more than 25% of all new diagnoses. For twenty-eight years, society has largely turned a deaf ear and blind eye to the suffering of those affected by AIDS, because it was seen as a disease “those people” had – namely gay men, IV drug-users and people of colour.

Society as a whole has chosen not to take seriously the questions many doctors and scientists have posed about the real causes and origins of the disease. Big Pharma has seized the opportunity to engage in its usual parasitic behaviour, while bringing us no closer to a “cure”. And the Fundie-McNugget™ Brigade continues to fight and knock down every attempt to bring safer-sex discussion to classrooms and public forums, because they are frightened and self-loathing of their own and terrified of others genitalia.
Until last month, my monthly co-pay for the medications I take, as a 26-year survivor (living with full-blown AIDS since 1983), was $691.97 (for Kaletra, Epivir, Intellence, Isentress, and Dapsone). There’s no question that someone is benefiting from this disease… but it’s not the patients!
Today, AIDS remains the leading cause of death for Black women (including African-American and Black American women) aged 25-34 years. It’s the third leading cause for the same group, aged 35-44 years; and the 4th leading cause for those same women between the ages of 45 and 54. In fact, AIDS is the sixth leading cause of all women between the ages of 25-34, second only to cancers and heart disease.
As a young monk, walking home from being fired from a part time job as a security guard, because the supervisor discovered I was “a fag”, I was mistaken for a police officer, by four Haitian illegal-immigrants in South Florida, May 10th, 1983. In the hour that followed, I was beaten, raped and left for dead, behind a 7-Eleven store, along Dixie Highway. When the police arrived, I was in shock, covered in blood and bruises, and the investigating officer said he thought for sure that it was some kind of ‘kinky sex fantasy gone wrong…” throwing me out of the police station, and never looking for the assailants. The newspapers carried the story, and were outraged, as were many locals in Hollywood and Fort Lauderdale.
Six months later, I was in the hospital with 106-fever and pneumocystis carinii pneumonia. Doctors told me that fewer than 15% of the men who came in with that kind of pneumonia survived at that time. I was diagnosed with what was then known as “GRID” (Gay-Related Immune Deficiency). When the other monks heard that I had “that disease”, they never came to the hospital to see me… never called my family to tell them… and by the time I was released, twenty-one days later, they had abandoned the house we shared, taking all of theirs (and my) things with them.
It’s been twenty-six years now, and I continue to beat the odds, through Tibetan medicine, Science of Mind techniques and alternative healing modalities. But that doesn’t change the discrimination that I continue to face… or the pain that marginalisation causes so many others.
Today, more than 33.4 million adults and children are infected with HIV and AIDS. And while I am one of the marginal few who continues to question the veracity of the “official story” – that HIV is the primary cause of AIDS – the point is moot, when it comes to the suffering both diseases cause.
A severely weakened immune system has resulted in my inability to work.
Have you ever broken a bone? It was terribly painful, wasn’t it? Imagine breaking your arm and then having that same pain for twenty-four months. AIDS has so weakened my immune system that the shattered arm I suffered in November 2007 remains broken today, and has not healed, despite reconstructive surgery, and the insertion of a 10.5 inch (26 cm) plate and 18 screws into the bones. And the pain? It remains a constant reminder of that day, when an apparently AIDS-related neurological disease caused severe Bradykinesia and I flew headlong into a brick wall, while shopping for holiday presents – ironically, for those who were disabled and too poor to afford gifts for one another.
I’m one of the fortunate ones, however. I have the loving support and care of an amazing partner (who courageously battles Parkinson’s Disease in his own life), a wonderful family (including an extended family and of course the sangha (monastic and lay community). And I have the benefits of having worked with people like Louise L. Hay for seven years, in the earliest years of the pandemic… and with leaders in the fight for our lives, such as Cleve Jones, Ma Jaya Sati Bhagavati, Michael Callen and Elizabeth Glaser.
Others are not so fortunate.
You Can Make a Difference
The simple fact is that most of us living with this dis-ease are living well below the Federal Poverty Level. We can barely afford housing, and yet, even when we reach out to the communities doing the most for people with AIDS – the shelters, the ashrams, the social service groups – they are unable or unwilling to help us. I was told by the “gatekeepers” at my own guru’s ashram that unless I could afford the well above average rents and living costs established by their community, I would not be able to move there. As a result, I was literally homeless for more than three months.
Social service agencies have had their funding cut to a minimum, in no small part thanks to the Fundie McNugget™ Brigade and the Bush Cabal… but there has been no relief under the Emperor’s New Plan for America either.
Take time to consider how you and those in your local community can reach out to those who are affected and infected. Listen to the stories of those who are suffering, and share ideas that would make that suffering a little less. Become involved and show the compassion we all profess to want to cultivate.
The Dean Sandoval Centre for Compassionate Care
In June 2005, Dean Sandoval lay in a hospital bed in Orlando’s Florida Hospital. He was recovering from minor intestinal surgery, following a long and successful battle with non-Hodgkin Lymphoma. Dean also had AIDS. A nurse, who was a “rotating” nurse, covering the shifts left open by nurses requiring some time off, was assigned to Dean’s floor.
Among the first things she did was to erase my name as the “spouse” on Dean’s contact board. She replaced it with his mom’s name and number. (His mom was staying with us, and was outraged by the nurse’s actions.)
When Dean had difficulty getting from the bed to the bathroom, and had an accident, he rang for the nurse to help him clean up. And because she was rabidly AIDS-phobic, she left him laying there in his fecal waste for 2 hours, until I arrived, and with the charge-nurse, cleaned him up. But it was too late. In his weakened state, Dean developed a decubitous wound that ate away at his flesh, clear down to the tailbone within a week and a half, despite every effort to contain and debride it. It would claim his life less than two weeks from that day.
One of the chief projects of the Contemplative Order of Compassion will be to build and establish the Dean Sandoval Centre for Compassionate Care – a centre for social services, pastoral counseling, and loving support for those living with (and dying from) AIDS, cancer and other life-challenging dis-eases. You can read more about this effort here: http://www.orderofcompassion.com/centre_for_contemplative_care.html
Through hands-on care partnerships with leading community healthcare providers, hospice volunteers, caregivers and pastoral training programs, as well as by gently advocating contemplative care at a local, regional and national level, we believe that we will positively impact the quality of life for those we serve, relieve individual and family suffering, and effectively create a more courageous and peaceful community that provides compassionate care for all, especially those facing end-of-life issues.
Opportunities exist for individuals and corporate sponsorships, grants and donations to make the Centre a reality in the Greater Washington D.C. area, and later throughout the country. Contact the Development Office for more information.
Over the past year, more than two million people died with AIDS worldwide. And another two million children (under the age of fifteen) are living with the dis-ease today. For every five people diagnosed, only two have access to medical treatment.
This Year’s Theme… I AM
The World AIDS Campaign arrived at the selection of the theme Universal Access and Human Rights after close consultation with representatives of various constituencies, communications and media representatives of partner organisations, and friends of the World AIDS Campaign.
Why I AM?
Understanding HIV and AIDS from a human rights perspective can be difficult. Human rights are often misunderstood and can sometimes be seen as abstract ideals with not much practical relevance for real people.
The slogans for the World AIDS Day materials were designed to bridge that gap and underscore the importance of awareness of Human Rights.
Among the key slogans adopted:
- I am accepted.
- I am safe.
- I am getting treatment.
- I am well
- I am living my rights.
- Everyone deserves to live their rights
- Right to Live
- Right to Health
- Access for all to HIV prevention treatment care and support is a critical part of human rights.
In recent years civil society has not asked for new promises, but rather that promises already made be kept. Chief among these today remain the following objectives:
- The commitment signed by the 189 members of the UN present in 2001 as the Declaration of Commitment on HIV/AIDS
- The 2005 G8 commitment to provide universal healthcare access by 2010.
- The 2005 UN Summit commitment: “Developing and implementing a package for HIV prevention, treatment and care with the aim of coming as close to the goal of universal access to treatment by 2010 for all those who need it.”
As religious hate-groups masquerading as churches – chief among these, the Roman Catholic, Church of Jesus Christ of Latter Day Saints, and fundamentalist fringe groups – continue their campaign of intolerance, hatred and violence against humanity, we can make a difference.
Make it known that you support the objectives of the Charter for Compassion – that you demand these tax-exempt Political Action Committees, disguised as churches, “…to return to the ancient principle that any interpretation of scripture that breeds violence, hatred or disdain IS ILLEGITIMATE…” or lose their tax-exempt status permanently.
Make it known to the the officials of the Roman Catholic Archdiocese of Washington, D.C. that the American people will not be held hostage by the extortion tactics of an contracted service provider, and that this nation will not become a theocracy on our watch!
Get involved on a local, regional and national level. Put your compassion into action. Take time to listen to the stories of others, and take time to share your story as well. You’ll never know how your words could impact the pain and suffering of another.
Finally, take time to share this with as many people as you can… Help us take this message around the world.
My name is Dharmacharya Gurudas Suynatananda (Francis-Maria Gianmichael Salvato to those who knew me in the secular world and as a Catholic clergyman), and I have AIDS. I am committed to bringing emergent spirituality to the world, and creating an environment in which it is safe for people of all traditions, backgrounds and beliefs to come together and care for those in need.
This is MY world, and I intend to take it back!
- dharmacharya gurudas sunyatananda
DharmadudeUnplugged.com
Copyright ©2008, His Eminence Dharmacharya Gurudas Sunyatananda. All rights reserved. This material may be reproduced, blogged, quoted or distributed, provided the entire copyright including contact information remain intact. It may NOT be altered in any way, without express written permission.
With the official start of the Christmas season now upon us, the whining, bitching and complaining about the “commercialisation of Christmas” has begun. A couple years ago, I wrote a piece, entitled, “
In the short time you have been reading this post, 180 people have died from hunger. 