A tradition of silence and taboos on the topics of sex and sexual health has led to an increased stigma when it comes to sexually transmitted illness and disease, STI’s and STD’s. This “tradition” comes at a high cost when it impacts potentially deadly and contagious viruses such as HIV/AIDS (Human Immunodeficiency Virus/Acquired Immune Deficiency Syndrome). Discovered in the late twentieth century this deadly infection has stolen millions of lives, and while we have made great progress in treatment, prevention, and awareness, we have not eliminated the illness or the stigma.
While the media has a history of focusing on certain groups as being high risk, Native Americans have been largely ignored. This is mainly due to faulty recording of health data and cultural miscommunication. Thankfully there are efforts that have been launched to raise awareness in tribal and indigenous communities across the country and in US territories. While tribes and tribal groups have been receptive, the funding agencies and policy makers continue to turn a deaf ear. At the National Center for Community & Organizational Readiness, Pamela Jumper and her colleagues have been working in collaboration with communities to raise awareness about sexual health and HIV/AIDS. Their tool is Community Readiness, a structured assessment to mobilize and energize a community based organization, empower special populations such as women as a subpopulation, increase cultural sensitivity, and increased efforts in community capacity building assistance as well as community based participatory research. NCCR assists communities in providing HIV/AIDS prevention services and HIV testing. This work stems from a theory based and issue specific readiness model that can be and has been applied to most social issues. Below is Pamela’s interview.
What inspired you to educate others about sexual health? Sexuality wasn’t a topic that was discussed in my family until myself and my sister were grown women. Our mother, then in her 70’s, said that she had some regrets in her parenting and that one was that we didn’t have more open discussions about sexual health and sexuality in general. As she gained wisdom with her years, she believed that talking about intimacy created a deeper sense of openness, honesty and trust and a kind of mother-daughter camaraderie that she wished she had when we were adolescents and young adults. Her comments stayed with me.
I found myself working in the field of prevention and treatment of substance use just as methamphetamine use began resurfacing in the late 1990’s and in early 2000. When we began to examine the consequences and outcomes related to substance use, Hepatitis C, Sexually Transmitted Infections (STIs) and HIV were high on the list. As we delved further into HIV, we learned that there was virtually no accurate data related to my Native population (the term “Natives” refers to American Indians/Alaskan Natives).
That became more and more disturbing as I learned more about how health disparities increased in Native people and funding efforts to improve health decreased. HIV became especially concerning knowing that funding follows data and the data was not being reported in the national statistics. Too often, Native people were classified as “other” and yet we are indigenous to this country. We have fallen off the national policy radar. HIV data relies heavily on state surveillance and because many Natives utilize Indian Health Service hospitals or clinics or 638 tribal clinics for health services, their HIV data is often excluded in state data that funnels to national surveillance. Those who did utilize state or public facilities for HIV testing experienced a high level of misclassification, either by choice or by the lack of inquiry on the part of the provider who would assume ethnicity and record it as such. To further complicate matters, we learned that when someone identified as Native and Hispanic, or Native and any other ethnicity, they were placed in the category of “other”. The result is that Native people appear to have very little HIV and yet, that is not the case.
With the support of a very concerned group of people on our CA7AE team (Commitment to Action for 7thGeneration Awareness and Education), we moved forward to build our soap box about the lack of accurate data and the resulting lack of funding for HIV treatment or prevention. Barbara Plested, Andrea Israel and Irene Vernon were my mentors, my colleagues, my support, my leaders…and we all believed strongly in healthier outcomes for Native people.
Part of our goal was to sexually empower women to protect themselves through condom use and safe sex practices. CDC (Center for Disease Control) still isn’t funding Natives for HIV Capacity Building Services (CDC Division of HIV/AIDS Prevention) and that’s not only wrong, but it’s a national shame. Hopefully the inroads that we’ve made through CA7AE and NCCR and the materials that we have developed will provide at least some support for those communities who want to create healthy change. Change that results from our model (CRM) was focused less on the individual and more on building the strength of the community to create and sustain healthy change. We did this through the development and use of the Community Readiness Model, a model that utilizes an assessment of community perception around a specific social issue to determine a readiness stage (of nine stages) which can be used to increase readiness and build on culturally consistent strategies for healthy change.
What steps did you take to start this particular journey? When we first began our community work in HIV, we would establish a booth of cool giveaway items talking about safe sex practices and condom use to initiate the conversation about sexual health. People would pick up our items, see the word HIV and put the items back down and walk away. We would talk them into coming back by chatting casually and talking about “safer” topics, such as meth use, alcohol use, underage drinking, and how those behaviors relate to HIV risk. Most hadn’t even thought about those related behaviors for risk in the terms of HIV. We utilized those “safer” and easier to discuss topics to introduce the presence of HIV risk and over the decade, we saw many changes occur for the better.
In 2007, we, along with two other Native focused agencies (Intertribal Council of Arizona and National Native American AIDS Prevention Center), launched the first National Native HIV/AIDS Awareness Day. We were overwhelmed and greatly touched by the response of U.S. Native tribes, organizations and groups who really got behind this day and held events to raise awareness of testing and prevention. This day has continued to increase in popularity and in the number of events held nationally.
That awareness day had such an amazing impact!! In addition and in conjunction, our agency (CA7AE through Colorado State University) produced 17 PSAs, a video on Community Readiness, fact sheets for Natives, numerous manuals, white papers, documents, publications and resources for various groups to utilize in their respective groups. All of the materials that we developed were offered free of charge through our website.
Now, those people who were initially reluctant to take items that said “HIV” from our booth had reversed their thinking and now sought us out, called us, requested information and materials, visited our websites, and offered to be on posters and materials. Grandmothers were taking condoms by the handfuls and pocketing them with the firm resolution that they were going to sit down with grandchildren and talk about the need to practice safe sex. We believe that we, as a team, were able to contribute significantly to this paradigm change for Native people related to sexual health.
What was or are the hardest obstacle(s) to overcome to meet your goals?/What is your proudest accomplishment so far in relation to your work? Fear and stigma! We tend to avoid things that frighten us. As a breast cancer survivor, I know that mammograms are often avoided because of the fear of the outcome. And yet, mammograms are the best early indicator to save lives. It’s much the same with HIV testing. People fear taking the test, concerned that they may be positive. They somehow think that if they don’t know the result, then that’s better than testing positive. There’s also that stigma that someone might think the person requesting the test is gay, as if that’s something to be ashamed of. Still today, THAT stigma is alive and healthy and totally inappropriate.
HIV testing is important for so many reasons! First, if positive, early detection means one can begin medications that maintain a person’s good health for a long, long time. Second, funding depends on data and the lack of data means less funding to Natives and therefore, fewer services in both prevention and treatment. This is especially true for the Native population where we comprise less than 1% of the population. It is so essential to have adequate data to reflect our risk and thereby remain on the funding radar.
As for the proudest accomplishment in my work, I would have to say that nothing makes me happier than to seeing a community take our community readiness manual and create something sustainable and healthy in their own community. When we hear the success stories of these folks, it warms our team to the core. I’m blessed to have made so many wonderful friends in this field, people I might never have met if not for the travel we’ve been privileged to do for this work. I’m pleased that we now have a National Native HIV/AIDS Awareness Day and that it increases in engagement each year.
I’m honored to know that our communities are in the hands of many strong and powerful women who are invested in health and political change, women who walk for the preservation of the water, who raise their voices in song for change, women who have led tribal nations as Chiefs, Presidents, or who serve as council members. My tribe is a matriarchal tribe. In our history, women traditionally held high positions. For many years, through colonization, this power was suppressed and now, prophecies are coming true and we’re seeing tribal women making strong positive change and showing younger women what’s possible. I believe our future is in good hands!
How can people get involved either through your work or in their own communities? Our model, Community Readiness, is available through our website and the manual is free of charge. The manual is written in a user-friendly format that details how it can be launched in a step by step format. It can be used and has been used, for most any social issue.
The World Health Organization used an adapted version of our model to create policy change around prevention of child maltreatment in five countries. The model has been used for prevention of domestic violence, child abuse, HIV, STD, MRSA, prevention of head injury, this list is endless. This is a manual/model that is geared toward support of every day community folks using it to create sustainable community change. The model mobilizes a community by building on the spirit of those who live in the community and because it uses existing resources and community input, cultural integrity and sustainability become part of the process. It’s been used in over 3,000 communities and 43 countries.
There have been well over 100 publications about the model, and with around 50 of those by our staff. It’s a belief system that follows Margaret Mead’s quote of “Never doubt that a small group of thoughtful, committed citizens can change the world, indeed it’s the only thing that ever has”.
People can reach me through my email at: firstname.lastname@example.org And all are welcome to like our CA7AE page (see below) on Facebook as well as through my personal Facebook page, Pamela Jumper Thurman.