The Positive Side

Spring/Summer 2004 

As the Wheel Turns

The HIV/AIDS Medicine Wheel

By Albert McLeod

IN THE AMERICAS, Aboriginal People have higher rates of poor health than the general population. There are epidemics of heart disease, diabetes, addiction, depression and other preventable illnesses due to the loss of traditional lands and the restrictive policies of successive governments. HIV infection is also rising at an alarming rate. According to Health Canada, Aboriginal People now make up 14.1% of AIDS cases in Canada, even though they comprise only 4% of the general population. The virus is increasingly reaching Aboriginal women, with injection drug use and heterosexual sex as the major modes of transmission. The AIDS epidemic is an unprecedented crisis that poses a serious threat to current and future generations.

This article describes one of the innovative HIV/AIDS education tools developed to reach the Aboriginal community. The “HIV/AIDS Wheel” was first introduced to the Canadian AIDS movement in 1993 by Healing Our Spirit BC First Nations AIDS Prevention Society (HOS). Leonard Johnston and Frederick Haineault, both HIV positive, co-founded HOS in 1992 as a way to educate Aboriginal People about the importance of responding to the growing epidemic.

While on a healing journey at his home in Alberta, Johnston had the vision of adapting the traditional Medicine Wheel concept to the stages of HIV disease. He essentially merged the clinical, social and cultural aspects of HIV into a life-generating path, moving away from the “AIDS = death” messages of the previous decade to promote a holistic understanding of the disease. The Wheel concept can help all people with HIV/AIDS (PHAs) better understand where they’re at with the infection so they can make choices that might improve their lives.

“As Aboriginal People, we always have a choice. We can chose to do things our way, the way of the People, or we can chose to do things in a way that’s as foreign to us as a hot dog would have been to Sitting Bull.”

— Quinn Wade, APHA activist

The Medicine Wheel

The Medicine Wheel can be thought of as an “Aboriginal teaching circle.” It’s called a wheel because it revolves endlessly. This dimension of movement represents the universal cycles of life — the changing of the seasons, the movement of the stars, the stages of life (from conception to death). For 12,000 years, Aboriginal People refined their sciences and oral traditions, which helped them create a unique world view. Their teachings describe the relationships people had with other living worlds and the dimensions around them.

Over the past few decades, with more Aboriginal People opening doors in educational and scientific institutions, the value of this ancient knowledge is beginning to be revived and reintegrated into the Aboriginal way of doing things. For example, in 1984 the Four Worlds Development Project at the University of Lethbridge published The Sacred Tree. This book, which teaches about the Medicine Wheel, gathered life lessons from many Elders and Aboriginal cultures with the purpose of creating a culturally competent model to deal with alcohol addiction.

Two important Aboriginal values — efficiency and portability — are key to understanding the Medicine Wheel. The circle is the centre, the place where the four cardinal (of primary importance) directions meet — East, South, West and North. For most people, it’s important to know where they stand, where they came from, and where they’re going. The Wheel concept serves as a multidimensional personal roadmap that can be carried in one’s mind and actions. The symbols and directions are codes and pathways which are easily followed once one understands their meaning. The “medicine” inherent in the Wheel exists on many planes, and as long as the relationships between all forces are maintained in a balanced and positive way, the medicine will flow, providing vision, strength and healing. This concentrated way of holding and sharing knowledge (similar to a modern CD-ROM) is crucial because prior to European contact, Aboriginal groups traveled great distances, making it difficult to carry more than what was considered essential. With even greater mobility today, it still continues to be important for Aboriginal People to “carry” their medicine in this practical way.

The Medicine Wheel teaches us that we’re all part of a family and community and it’s our obligation to plan for the future so the decisions we make don’t negatively affect the people seven generations from now.

The HIV/AIDS Wheel

Developed at a time when AZT was the only available treatment option, Johnston’s HIV/AIDS Wheel follows the flow of the Medicine Wheel, incorporating the medical knowledge of HIV disease into a cycle of life stages and states of being. These elements speak to the inter-connected relationships and forces within our environment. Johnston shared his observations of the full cycle and impact of the disease because he could see the larger picture it presented. He saw young men forced to deal with their diagnoses and impending deaths without the support of their families and communities. He felt that the discrimination and isolation they experienced could be overcome if the community knew more about the stages of the disease and what they needed.

The HIV/AIDS Wheel provides a reminder and opportunity for health care professionals, PHAs, their family members and others to recognize the emotional, spiritual and social aspects that influence and are influenced by this disease. Emotional and spiritual factors can greatly affect one’s ability to cope with the disease.

The following text explains the details of the HIV/AIDS Wheel. It was written down for the first time in 1997, when Manitoba Health printed the “HIV/AIDS Teaching Kit” resource manual. Up until then, the HIV/AIDS Wheel teachings were taught through the oral tradition.

CHILD STAGE
Clinical: The “window period” begins immediately after a person is infected with HIV and can last for three to six months. During this time, it’s difficult to detect HIV with an antibody blood test because the immune system may not yet have produced enough antibodies to yield a positive test result.
Colour: Red represents blood, the source of life and the target of HIV.
Direction: East represents the place where all things begin, as in the rising of the sun each day. Here, HIV enters into the cycle of a person’s life experience.
Phase: The “physical” phase represents the invasion of HIV into the blood system (seroconversion) and the body’s response.

YOUTH STAGE
Clinical: An HIV positive person has no symptoms of HIV infection. This stage can last up to 10 or more years.
Colour: Black represents darkness. Negativity, fear, shame and anger are common reactions to an HIV diagnosis.
Direction: South represents learning and exploration.
Phase: The “emotional” phase relates to how a person may feel in dealing with their diagnosis. The person may experience a rollercoaster ride of emotions as they cope with issues of confidentiality, disclosure and counselling.

ADULT STAGE
Clinical: A person begins to show symptoms of HIV disease.
Colour: White represents light, balancing the “darker” aspects of living with HIV/AIDS. It also represents hope, knowledge and acceptance of an HIV diagnosis.
Direction: West represents knowledge and growth.
Phase: The “mental” phase is a time when a person will make important decisions about treatment, disclosure, living wills, work and other considerations.

ELDER STAGE
Clinical: AIDS is a medical term that defines the end stage of HIV disease. The immune system can no longer fight infections and diseases, eventually resulting in death.
Colour: Yellow represents the sun, the giver of life.
Direction: North represents healing, acceptance and closure.
Phase: The “spiritual” phase is a time when a person with AIDS is confronted by the nearness of death. As the physical body weakens, the need for spirituality may grow stronger. As death approaches, this may be a time of healing with family, resolving old issues and finding closure.

A person may go through these stages in a different order or even repeatedly (such as PHAs who were on the brink of death but then got their health back when protease inhibitors came out), but it’s been my experience through having many friends who’ve lived with and died from HIV disease that they do travel on the journey of the Wheel. An important teaching to consider is that we are all on this life cycle and we’ll all eventually go along the same path. People with HIV may go sooner, but the point is: “Life is about how you live every day — not about how long you live.

The HIV/AIDS Wheel was Johnston’s vision of how to explain HIV/AIDS to Aboriginal People, who were cautious of strangers coming into their communities. The value of the Wheel is that it’s brought us to the second generation, or wave, of the epidemic. As we’ve come full circle and now move from the Elder to Child stages, we see that there’s another generation at risk — orphans who lost their parents to AIDS, gay youth, and children of HIV positive parents — that faces an uncertain future in this country. Some are now teenagers, and may be homeless, in jail or on the street injecting drugs.

So, as the Wheel turns, do we find that we have the foresight and spirit to plan for seven generations into the future? It will depend on how much good medicine we’ve absorbed and how it has healed us. For me, this time it is the teachings of advocacy, compassion and harm reduction that sit in the Eastern Doorway, waiting to be asked in.

“Nine Circles Community Health Centre is still learning how to apply the HIV/AIDS Wheel to all aspects of our integrated service delivery model, but we’ve made a lot of progress. First, our programs use a holistic approach rooted in the teachings of the Wheel. Staff ask: Where does the client fall on the Wheel? How does their place in their Wheel journey influence their care? Second, the Wheel has influenced the governance of Nine Circles, as our board works within a consensus model of decision-making that incorporates the talking circle. Finally, our speakers’ bureau incorporates the Wheel teachings when presenting to outside agencies.”

— John Stinson, Transitional Executive Director, NCCHC

Albert McLeod has worked in the Aboriginal AIDS movement since 1986. He participated in the creation of the Nine Circles Community Health Centre model. He’s also an artist who lives in Ottawa and teaches Two-Spirit youth about traditional arts and their Two-Spirit culture. For more info about the HIV/AIDS Wheel, the HIV/AIDS Teaching Turtle, and the Four Doorways Harm Reduction Training Turtle, contact him at albert_mcleod@hotmail.com

Illustration source: Healing Our Spirit BC First Nations AIDS Prevention Society 1993