Federal and state environmental relations

Transcription

Liam O'Fallon: Good afternoon, and welcome to the Partnerships for Environmental Public Health Web Seminar titled: Environmental Justice, A Native American Perspective. My name is Liam O'Fallon, and I'm the Coordinator for the Partnerships for Environmental Public Health Program at the National Institute of Environmental Health Sciences, Division of Extramural Research and Training. I will be the Moderator for today's session. I'd like to acknowledge and thank my colleague, Symma Finn, who is responsible for organizing this excellent and timely webinar. Unfortunately, she's unable to participate today. I'm very pleased to introduce our topic and our presenters for today. Katsi Cook, the Director of Iewirokwas Midwifery Program of Running Strong for American Indian Youth, and Elizabeth Hoover, Assistant Professor at Brown University. Today's webinar is the beginning of a dialogue on this important topic. We are already planning to follow up with a webinar for early 2013. Environmental justice is an important component of environmental public health that moves beyond the identification of environmental health disparities through research and policy change that attempts to address ongoing grievances and injustices related to environmental exposures. The U.S. Department of Health and Human Services' vision for environmental justice is, "a nation that equitably promotes healthy community environments and protects the health of all people." Since the development and implementation of the first U.S. Department of Health and Human Services Environmental Justice Strategy in 1995 progress has been made in identifying and addressing disproportionately high and adverse environmental exposures. However, inequities persist. Today's webinar highlights a key element of the 2012 U.S. Department of Health and Human Services Environmental Justice Strategy and Implementation Plan, the importance of community partnerships and engagement. As the U.S. Department of Health and Human Services implements policies that have tribal implications, community partnerships are critical for establishing regular and meaningful consultation and collaboration. Such partnerships should include a broad range of tribal representatives, encompassing the full range of generations, languages, and religious and educational backgrounds within a community. In today's webinar Katsi Cook and Elizabeth Hoover will highlight ongoing environmental justice issues that Native American tribal groups have mobilized around for many years, and will touch upon emerging threats, such as climate change, that will affect Native Americans disproportionately. The first presentation will be given by Katsi Cook. Ms. Cook is a member of the Wolf Clan of the Mohawk Tribe. She took up midwifery in 1977, following the Loon Lake Conference of the Six Nations, where controlled reproduction was designated as a prerequisite to Native American sovereignty. She helped develop the Akwesasne Freedom School, and when concerns arose among women on reservation about the safety of breastfeeding, she started the Mothers Milk Monitoring Project in 1984 to monitor PCB levels in breast milk and to address the environmental impact of industrial development of the Saint Lawrence Seaway Project, which began in the 1950s. The Mothers Milk Project continues and provides services and advocacy, such as inclusion in the Superfund Research Program, for residents of Akwesasne. Ms. Cook monitors indigenous rights in the drafting of midwifery legislation and is the founding aboriginal midwife of the Six Nations Birthing Center, where she assists with student training, curriculum development and community education. She's also the Director of the Iewirokwas Midwifery Program of Running Strong for American Indian Youth, and with support from the Ford Foundation she's developing the First Environment Institute to restore indigenous puberty rights as a means of advancing maternal and child health on the Akwesasne and Pine Ridge Reservations. Ms. Cook? Katsi Cook: Thank you, Liam. Good afternoon, everyone. This is the [gutichiwa]. My name has been shortened to Katsi Cook, where I'm known for my work in Woman is the First Environment. We begin with the centrality of women because women's bodies, minds and spirits are the doorway to this life. And this wonderful image that you can see on the screen, done by [Christie Bellcourt] and [Onashna Biquay] in Ontario, Canada shows an image of rootedness of connection. One could view this image as the placenta, the rootedness of the tree, and of plant life, and the human connection to all of life. And so if reproductive justice were to be described in the indigenous consciousness it would be this interconnectedness to all of life. And so, in 1981, when I began my first study and inquiry into the issues of what's now called environmental reproductive health, following the investigations in my community of different elements of our food chain, I began the First Environment project. And, again, the centrality of women from our community context had to do with how we organize ourselves culturally and socially, that we are matriarchal in world view and consciousness, matrifocal in our cultural meanings, and matrilineal in our social and physiologic power, and we think of family as a strategy. And as a counterpoint to Elizabeth's idea that family is a thinking body, Iewirokwas Mohawk nation in my community, we are also a dreaming body, and in order to organize my people's thinking about environment and reproduction, health and justice, we did a foundational Community Births or Community Environmental Search Conference that was funded by a grant from the National Institute of Environmental Health Sciences Partnerships for Communications, connecting research scientists, community members and health professionals. And so in that process we began to understand that as life givers that Mohawk mothers had to better understand the links between their reproductive health and the environmental concerns given that in 1984 our community was the largest PCB designated national priority list Superfund site in the country. And so from that we began to organize the community and women and gain strength in all levels of our community. So we began with women. In our communications research we found that women are more concerned with environmental issues than men and that while major media gets public attention to an issue it's at the level of peer group support that knowledge exchange and behavior change happens. And so this particular webinar is organized around a paper that was published recently in Environmental Health Perspectives that was based in a meeting that my program at Running Strong funded that was a symposium on environmental reproductive health in Indian country. And so the partners who were invited include David Carpenter at the State University of New York at Albany, who is a long-time scientific partner of our community, and many of the different communities who are detailed in this paper, Indigenous Peoples of North America, Environmental Exposures and Reproductive Justice. So Elizabeth Hoover, myself, Ron Plain, Kathy Sanchez, VI Waghlyl, Pamela Miller, Renee Dufault, Caitlin Sislin and, again, David Carpenter were part of that meeting, and we aligned the meeting with the [American Horse Families Sundance] situated at the Wild Horse Sanctuary in the Black Hills. And so here are some images from that place where the four directions meet in the Black Hills, with a YouTube link to Tom Cook describing the uranium mining struggles in that area. The beautiful indigenous woman to the left is VI Waghlyl of Alaska Communities Against Toxics. To the top of the left you see the tree of life, where we bring our thoughts, our prayers and our deliberations for coming generations. The teepees of the Sundancers, the men and women's teepees, and to the bottom on the right of the screen you'll see below the Sundance grounds, the site where [Kemco], a Canadian mining company, intended to do test wells for uranium mining drilling. And we were able to organize the local ranchers and farmers to turn back the $3,000 checks they got from [Kemco] and defeated for now this attempt to desecrate the sacred grounds that had been in ancient memory always used for a meeting place for tribal peoples. And so of the presenters in the symposium was our friend and brother, Ron Plain, representing Aamjiwnaang First Nations, and while they're in Canada they're right on the U.S.-Canadian border, and in the indigenous mind this borderline between the U.S. and Canada, my own mother raised me as a Mohawk, saying that that border is nine feet in the air and because no Mohawk was ever that tall we never bump our heads on this border, until Homeland Security was created, and so now that border reality is more of a threat to our community continuity, but, nevertheless, we're concerned about our relatives throughout the hemisphere. And Ron Plain's presentation describes how the men are of particular vulnerability when it comes to contamination of the environment and Theo Colborn at the Endocrine Disruption Exchange, has a wonderful CD called The Male Predicament, the faceplate of which you see on this frame, and so I point this out to just reference the vulnerability of the men and the women's concern for our coming generations. And so I like this quote from a young Cherokee mother, where I'm working with the Health Department there, to revise and restore community culture through the doula and midwifery implementation. She said we're going to have to be like a willow branch, we're going to have to weave through there and bend and figure out how each community is, and so that was one of the purposes of the symposium, to understand what each community is dealing with. And so just to enter a little bit into what physicist David Peat calls linguistic fields, that the difference in thinking in the indigenous world. So, for example, we have an image of Tohi, which according to Tom Belt and Heidi Altman expresses the proper state of the Cherokee individual, that centered balanced, neutral, like a rock, with a stream of life flowing around it, and this Tohe is their definition of health. And, for me, as a Mohawk, the word [escana], peace and justice, is folded into that idea. And so in our thinking which emerges out of the linguistic field of our own languages, for example, the word Iewirokwas, which is the word for midwife in the Mohawk language, has deep ecological meaning inside of it, pulling the baby out of the water, out of the earth, or a dark wet place. It gives us some understanding or some insight into the significance of the language and how in that interconnectedness you need to be able to penetrate these fields of environment, justice and reproduction through the language. And so the Ottawa Charter and the Brundtland Action Plan are from other decades past that are a logic model for matching public health and environment frameworks to health and environment goals, and I've always liked this framework because it coordinates policy in health and environment goals and extends into reorienting services at the community level, treating symptoms of disease, origins and not outcomes, and getting at root causes and so at the community level that's been the response of our people to the challenges of coping with issues of environmental reproductive health. And so I wanted to have the meat of this presentation focus on layers of meaning that we use and bring together in our conceptualizing of environmental reproductive health and justice, that the United Nations' Declaration on the Rights of Indigenous People is a foundational document, that tribes are and indigenous peoples are focused on in developing policy. And you see at the bottom of this frame the UN Declaration on the Rights of Indigenous Peoples, Article 24, paragraph two, that speaks to our right to the highest attainable standard of health, physical and mental health. And so given that we work wherever we are rooted in community to advance these principles, and so I wanted to speak a bit about how in my community an organization of women called Kononkwe Council, or Women's Leadership Council, are focusing our efforts around specific organizing tools. And so our understandings of the fetal origins of adult disease and epigenetics began to bring to greater understanding this idea that woman is the first environment, that we know that culture, language, health all begins in the womb. And so, along those lines, we're advancing this knowledge of macro epigenetics, an understanding of how nutrigenomics, how what people eat affects their genes. Epigenetics meaning those influences on top of the genes that the diet and the shift in our diets because of environmental contamination, we need to have better tools for working our way out of the terrible health disparities that we experience, the increasing rates of diabetes, the reproductive health problems. We're at a point where we find that the [fecundity], the [self-fecundity] of the earth from environmental contamination has led into sub-fertility of the women. And in dealing with health consequences we use the tools at CDC of adverse childhood experiences, and I've listed the source webs for these so that you can better understand how in a community that's impacted on many fronts by environmental contamination, the adverse childhood experiences study and questionnaire tool links how early life experiences can cause a shortened life expectancies and early death, disease, and disability, and social problems later on in life. And so this has been a really important organizing piece at the tribal level in my community for helping our leadership and health leaders understand where we need to go to those root causes and origins. And so in terms of policy we're using the trauma informed systems of care that DHHS is advancing to better reorganize and resituate our community so that people can have better access to care. If we know the health disparities are a continuing problem then we need to reorganize the systems of care. And so an example of that has been recently the family nurse practitioner in our St. Regis Mohawk Health Services Clinic was the leader in revising prenatal care, and she just received recognition from the National Indian Health Board, received the 2012 Annual Award for shifting prenatal care to a group care model, called Centering Pregnancy. And we're expanding the general essential elements of that care to other aspects of social, mental health services, so that people can better access care and the community can better understand what care involves so that people can get healthy, can be healthier, that we know that the systems as they're now constructed re-traumatize people. And so in the midst of this weaving is the Reach the Decision Makers Program, that the outcomes of this work at the Program for Reproductive Health and the Environment at the University of California at San Francisco will be presented at the upcoming 140th Annual Meeting in the end of October in San Francisco. Two abstracts I wanted to bring your attention to. One, both are oral presentations given by my own team, collaborators protecting the future, who did a policy piece on the chlorpyrifos re-registration at EPA, and also Marge Plum and Tracy Woodruff and others who are doing protecting reproductive health through policy advocacy training. And so Reach the Decision Makers was a wonderful program, that it connects innovative science and policy training to increase the number of scientists, community-based leaders, public health, and healthcare professionals who are actively involved in informing the U.S. EPA, so it has reached the decision makers at EPA. And I was lucky and privileged to be accepted into a cohort of 25 people in the 2011 program. And so it was through that process that I became involved in the Indigenous People's Workgroup of the National Environmental Justice Advisory Council. We're doing a webinar, our teleconference, with the NEJAC, our Co-Chairs, Monica Hedstrom from [Whyit Earth], and [Lalihah Johns] from the Dine country of Arizona will be presenting our document fostering environmental justice for tribes and indigenous peoples to the National Environmental Justice Advisory Council. And so in the macro epigenetics model, for example, I have written a few things on this slide that I don't have a whole lot of time to go into much depth about, but we often hear of the increasing diabetes rates across the country, not just in Indian country, although the health disparity in Indian country is about incidents prevalence and lack of access to care. So a paper was published by Renee Dufault and others that was recently put into NIH's comparative toxico genomics database, a macro epigenetic approach to identify factors responsible for the autism epidemic in the United States, but this mercury toxicity model that Renee and her colleagues have generated also speaks to the increasing obesity, insulin resistance, and diabetes problems in Indian country and in American society. And in terms of trauma informed care, you'll be able to access a copy of this PowerPoint, but, just briefly, we include in our experience of environmental contamination the feelings of environmental violence that this trauma impacts one's spirituality and relationships with self, others, communities and environment, often resulting in recurring feelings of shame, guilt, rage, isolation and disconnection. And so it's from weaving together these different models of understanding of violence and trauma and how to find our way out of that to a more positive future. And so for me, as a Mohawk midwife, where it lands is in these questions and the generations of the sub-fertility of the women. We have many generations of health research in my community, and in the most recent inquiry in the reproductive health of Mohawk mothers, age from a cohort of 18 to 38. In preliminary data that's not published or peer reviewed, but has been presented to community members, only 35 of the initial 124 participants have typical menstrual cycles, so that our concerns are for what is perceived as high miscarriage rates and incidents of empty gestational [inaudible]. The women wanted to better understand what's going on in our generations that would account for the disease rates and for the sub-fertility in the families. And so I present this image of the flowers because in our creation story to our understanding of fertility and in the language everything is expressed in the image of flowers and we see this young Mohawk girl, who is in fact one of those flowers. And so this is a slide from the Aboriginal Healing Foundation in Canada that expresses how communities in Indian country, in tribes, in Alaska Native communities, and in Native Hawaii are trying to find our way out of environmental contamination that we see interconnected with violence, addiction, other problems. Increased organizational and leadership support, increased partnerships, which was one of the goals of the Hot Springs Environmental Reproductive Health Symposium, increasing our capacity to facilitate healing, to revise clinical healthcare through models, such as Centering Pregnancy, and now through training all of our staff across the programs that serve our community in trauma-informed care. And so this gives some visual image of that process of restoration and revitalization at the community level. Again, I mentioned Kononkwe Council earlier. Our mission is to reconstruct the power of our origins, our creation story, our language, our ability to work through our kinship system through creating collaborative approaches to the care, empowerment, and transformation of a traumatized indigenous community. So we've identified breaking down the silos. We realize, like everyone else, that in a four-year funding mechanism after the grant dries up the circumstances that created the need continue to exist. And so we want to bring down these silos to really engage our people in a conversation that will help us to continue to grow in health and wellbeing in an environment where resources are decreasing and our own indigenous processes have always guided us to prepare for the coming conditions. And I would add to that the current and coming conditions. And the lack of continuity of care at the community and federal level, where the key is relationship building, and so I really take good wisdom from Ken Jock, the Director of our St. Regis Mohawk Tribe Environment Division, who says that policy is only going to be as good as the relationships that create it. And so for this reason we focus on those layers of meaning in the previous slide, where we have to connect and interconnect across all levels of environmental justice and reproductive justice, so that decision making processes are informed by community groups, scientists and healthcare professionals. And so in these revisions we are implementing midwifery and doula care for the women. And in a recent midwifery implementation meeting in my community the women came up with a vision statement based in the language, that translates to the English, we will reawaken the strength of all female life to bring forward the love and medicine from the Mother Earth we dance upon, because we remember the coming faces. Those coming faces are the coming generations, whose faces are yet coming towards us out of the Mother Earth, as is said in our language and in our speeches and [inaudible]. And final slide, it is an image from a recent meeting held in my community, working our way towards coming to work towards the issues involved in environmental reproductive health. You see to the left there are two [Colgi] elders from the mountains of Colombia, who came to join us in this conversation of weaving webs of women's wisdom so that we can strengthen our communities. The [Colgi], who are indigenous people in Colombia, speak of the Mother Earth crying that she needs us to eat directly from her breast, and so in that thought of our ancient corn that came to us, the seeds of this corn in our stories comes to us from the sky world. And so, with that, I'll conclude my presentation with the hope that in these kernels of corn is the wisdom and the guidance we need to feed our generations properly once again. Thank you all for your time and your patience. Liam O'Fallon: Katsi, thank you very much for an excellent presentation today and a great way to begin the conversation on this topic. Now I would like to introduce the speaker for our second presentation, Elizabeth Hoover. Elizabeth is Assistant Professor of American Studies and Ethnic Studies, with a focus on American Indian Studies at Brown University. Her work is focused on environmental justice and Native American communities. She conducted her field work in the Mohawk Community of Akwesasne, looking at how industries and Superfund sites along the Saint Lawrence River and subsequent health studies around these sites have affected people's perceptions of their bodies and the environment. She's also working with subsistence revival organizations, such as Kanenhi:io Ionkwaienthon:Hakie (I'm sure I've mispronounced that), which means We Are Planting Good Seeds, that are trying to reconnect the community with farming and healthier lifestyle. In addition, she participates in the Brown University Superfund Research Program, working with community groups around Rhode Island that are dealing with issues of contamination and working with the EPA and the Rhode Island Department of Environmental Management on incorporating community input into environmental cleanups. In addition, Dr. Hoover is a member of the Outreach Committee of the Environmental Justice League of Rhode Island, a coalition formed to educate Rhode Islanders about issues of environmental justice. Dr. Hoover? Elizabeth Hoover: Thank you very much. And so today I'm going to talk about community-based research in hazardous waste communities. I'm going to focus specifically in the beginning on Akwesasne, which Katsi told you a little bit about. And this photo on the front here, that you're looking at, is from a Superfund site in New Jersey, so this is a boy from the Ramapo Mountain Indian Tribe, and there they're fighting for the cleanup of the Ringwood superfund site, which is a Ford Motors dump that right now they're trying to the community is pushing for the full excavation of the waste and Ford is looking to, of course, save some money and cap that waste there. So there's hundreds of hazardous waste sites either in or impacting American Indian, Alaska Native communities in the U.S. This is a map that the Outreach Core of the Superfund Project at UC San Diego created, showing that out of 542 Indian reservations, 319 of them are within 50 miles of the Superfund site. So this is definitely an issue that's impacting thousands and thousands of Native people. The U.S. Environmental Protection Agency defines environmental justice as the fair treatment and involvement of all people, regardless of color, national origin or income, with respect to the development, implementation and enforcement of environmental laws, regulations and policies. So in tribal communities a lot of times this environmental mitigation is significantly behind that of non-tribal communities, and so this is why it's important if we have any people from these communities who are listening in today that research gets implemented in these communities and that Native people are behind that and deciding where that research is going so that the right data can be gathered and the Native voice can be heard as far as how these sites should be cleaned up. So today I'm going to start by talking a little bit about Akwesasne, the community that Katsi mentioned in her panel. And this colorful map here shows the jurisdictional complications in this community. As you can see, it's bisected by the U.S.-Canadian border, which is sort of the sketchy green line in the middle. So the portion in yellow is what New York State considers to be part of its territory. The portion in pink Quebec considers to be part of its territory. And in purple we have Cornwall Island there that Ontario claims. The Akwesasne community considers itself one unified community that doesn't want to be claimed by any of those entities, but you can see how this makes dealing with environmental problems in a community like this difficult. The Saint Lawrence River is that large [inaudible] swathe at the top that bisects the community. There used to be a lot of fishing out of that River in the 1950s. The Saint Lawrence Seaway was developed there, and as part of that they broadened and deepened the River in order to allow ships to come up, and then the [inaudible] founders power dam was created upstream from Cornwall Island there. And this created cheap hydroelectric power, which brought industry to this area. So you see those red blobs there. We have General Motors, which is right adjacent to Raquette Point portion of the reservation. You have Reynolds Metals, which is just a mile upstream, it's now called Alcoa East because it was bought-up by that other red blob, right at the corner of the screen. Alcoa [rests] now on the Raquette River. So these photos are a view from my friend, Gina's front yard. She lives on Cornwall Island. So, as you can see, there's General Motors is very present in the community, and you can see how close they are to the River. So in the 1960s and '70s they were using a PCB hydraulic fluid in their operations. It's an aluminum foundry plant, but you can see also Reynolds Metals a mile upstream, also, an aluminum plant. The problem with this upper photo here is that there was fluoride contamination coming out of those smokestacks, which decimated the cattle population on Cornwall Island. You had cattle that were eating fluoride that settled on the grass, they were drinking fluoride contaminated water, and their bones and teeth were breaking from fluoridosis, as diagnosed by a Cornell University veterinarian. And they've since put scrubbers on those smokestacks, but you still have residents in that area that are convinced that their health was impacted by being exposed to all that fluoride. But to get back to General Motors here, they had their PCB-laden hydraulic fluids, which when they were flushed out of the system were going into wastewater lagoons, which were then periodically dredged and stored in unlined sludge pits, and there was also waste going into an unlined landfill. And so all of this was overflowing and leaching periodically into the Saint Lawrence River throughout the '60s, '70s, and '80s. And it was when this was discovered during the '80s, General Motors was placed on the National Priorities List as a Superfund site, and community members, like Katsi, became concerned about, well, if all this contamination is going into the river and we're getting all of our protein out of the river in the form of fish, which tend to take up these contaminants, is this something we need to worry about? And so they went down to the New York State Department of Environmental Conservation and demanded that somebody come up and have a look at these fish. And so [Ward Stone] came up, and here's some headlines from newspapers in the 1980s, and discovered, as you can see from these headlines, that in fact the PCB contamination was making its way into the fish. And so then the concern became, well, if the fish are contaminated and people are eating the fish, what is happening to the people? So Katsi's concern especially was with these women whose babies she had been delivering and she had been encouraging them to breast feed because this was the healthiest option for these babies, was this something that she should continue to do? Is there a concern about that contamination making its way into breast milk? And so, as she mentioned, with the founding of the Mothers Milk Project, that they did find that for women who were living in Akwesasne who were eating the fish, when they were compared with a control group from the middle of the state, that they did have higher levels of PCB contamination in their breast milk. And through research done at SUNY Albany and the New York State Department of Health they could fingerprint those PCBs were the same in the breast milk, in the fish, and they were coming from General Motors. And so there's been a long struggle to clean up that site. There was, you know, sediment was dredged, soils were taken away and sent to the landfills, and there was a fight between General Motors and the tribe about what those standards should be. So on tribal land sediments that were over one part per million PCB had to be excavated, for soils it was one part per million, and groundwater 10 parts per trillion. But on the GM property the levels were 10 parts per million and they fought to have that raised to 500 parts per million as far as being able to leave a lot of the soils in place. And it was a real struggle between the General Motors, that didn't want to spend a lot of money, the residents upstream from Akwesasne and [Macena], many of whom had jobs at General Motors and didn't want to see it cleaned up to an extent that would financially hurt the company. And I think we see that a lot in Native communities that live adjacent to other communities who are reliant on industry, that there's a concern about not punishing them too badly because then the company might close up. And for other reasons General Motors has now closed up, the building has been razed, and they're looking for a new buyer for that property, from what I understand. So the area has been remediated to some extent, but there's concerns about some of the residual contamination. But to find out to what extent this contamination had impacted the health of the people living at Akwesasne, there was a community-based participatory research project that was created between the SUNY Albany researchers, who had been brought in, the First Environment research project, which Katsi also mentioned in her presentation, and the Akwesasne Task Force on the Environment. So elements of the community came together to decide that they were really going to have input on how this health study was done. So these you see there's one fellow on the bottom there, when I interviewed the women who were part of this project, they said, well, he didn't necessarily last very long. So it was really a cohort of women who were trained to go out into the community and collect breast milk samples and blood samples and to perform different cognitive tests, depending on which study they were working for. And so as part of this, Mohawk women from the community received this training, which some of them then used in other jobs that they went on to as lab techs and nurses. And they gained this experience, they gained community input in the study, so I think a lot of people whose doors they went and knocked on wouldn't necessarily have taken part in these studies, had it been a random researcher from Albany, but the fact that it was a community member coming by to ask them for input in the study made them want to participate more. And it was a way, also, in the interviews that I did with SUNY Albany researchers, I said, well, this way we learned from the community in the sense when we think we have more community buy-in because we were all working together on these projects. And so there was collaboration in designing the projects and deciding what the focuses were going to be, and then the collection and analysis of the data. I won't get into all these different papers, but there were over 50 papers that were studied or that were published by these two Superfund projects that came out of SUNY Albany, and they pointed to the connections between PCB levels in residents and diabetes and heart disease and decreased thyroid function, lower testosterone in males. The timing of menarche was affected for girls, so girls who had higher PCB levels tended to have earlier first periods, and then also aspects of cognitive and memory in different portions of the population were impacted. And so I'll encourage anybody who wants to read more about those papers, Larry Shell is one of the scientists who really published a lot about working with the youth, and there are several other papers that are available on PubMed or that I can provide folks, as well. An important aspect of this study was that for a lot of universities that were going to go out and do research in a community you need to go through your university IRB, or the Internal Review Board, and you have to convince them that you're not going to harm the people that you're working with. But what the Akwesasne Task Force on the Environment decided was that they were going to set their own protocol. So this is the community IRB, and rather than it just being another version of the university IRB, it was really based on these three principles that come out of Mohawk culture in the kind of founding of the [hobnashoni] confederacy. And so this is skennen or the idea of peace, that Katsi mentioned earlier, which is also an aspect of health. Kariwiio or kanikonri:io, depending on who you talk to, some people think the good word or the good mind is a better term for this application here, and kasastensera or strengths. And so the idea of peace leads to mutual respect, and this idea that the community members working on this project and the scientists who were coming in need to have respect for each other's cultures, for each other as people, and as participants in this project. Their concept of good minds, leading to mutual equity. And so the grant monies that are coming in, how can those be used to not only support the scientists, but also the community, as well. So through the form of paying some of the participants of training members of the community to work on these projects, on spending money in the community when they have conferences there to order food and plates there rather than just bringing it up from Albany. Then the idea of strength then to mutual empowerment, and so you also had, as I mentioned, some community members who are gaining an education out of this. When these papers, that I referenced earlier, were published there were coauthors from the community and from SUNY Albany who worked together on those papers, so in that way different people were able to get credit for that work. So granted there are some challenges in conducting research in Native communities, both challenges for community members who were trying to get this research going and for the scientists trying to work with them. So there was mistrust of government and researchers based on past experiences. So a lot of communities don't have an excellent relationship with the state or with the federal government, so sometimes it's hard to put aside those mistrusts, and depending on the research history in the past sometimes people don't want to work with a new batch of researchers. So there had been health studies conducted in Akwesasne in the past, where people did not receive those results back, they were not asked about how they wanted that study to go. And so that was the challenge that was faced in this new study. It was, okay, are people actually going to be helpful to us in this one or is it just going to be another waste of my time? In some places the community feels research to death was something that I heard a lot. They grow tired of being guinea pigs, they don't want to take part in any more studies, and so it's really kind of a struggle sometimes to convince them that, no, no, this is going to be a helpful study. So Marlene Castellano Brant, she wrote an article talking about the ethics of aboriginal research. And she had a quote from an elder there saying that we need to go from big research to death, to researching ourselves back to life. And so this may mean self-initiated action or entering into effective partnerships, as she describes it. And then some authors from Akwesasne, Mary Arquette and some of her colleagues write in their article on Holistic [inaudible] Environmental Decision-making and Native Perspective, and they highlight the importance of continued research in order to have nation-based data. And so sometimes it's not enough just to have this kind of nationwide, that nation being the U.S., to try to bring attention to an issue, you need nationwide, as in your own tribal nation, data specific to that if you're going to try to engage in change in that community. So some people have this anecdotal data, saying, well, we have a lot of this disease in the community, and sometimes it takes a health study to get the right numbers to be able to show that and to gain action in that sense. People oftentimes consider indigenous knowledge at one end of the pole instead of this scientific knowledge at the other end of the pole. And generally if you get people together it doesn't necessarily work like that, and so that was a model that [Tos Leter], who is an environmental anthropologist, described. And so I created this sort of overlapping circles to show that there are these overlaps between traditional environmental knowledge, to local disease etiologies, meaning how do local people define or describe where the illnesses in that community are coming from, and, also, biomedical disease etiologies. There's an overlap there, and within that overlap is where community-based participatory research dwells. And this is where you're going to really have effective environmental outreach and effective health [inaudible] is in this space, where you're bringing together aspects of indigenous knowledge and some of this scientific information coming from these studies. So part of what I was especially interested in in talking to people who had been part of these studies for the last 20 years or so was this last box over to the right. So you can see this is a model of community-based participatory research that the AASPIRE organization came up with, looking at the development of the study, the implementation of the study, and then the dissemination of the research results. In the case of the studies that were done at Akwesasne it was pretty novel at the time to have results sent back to people. So previous health studies a lot of times participants didn't get to find out what their results were. And in this case they were sent a letter back to them describing what their personal results were. So this was pretty novel for the time. They figured it couldn't hurt to ask people what did you think about that? What do you think could have been done differently? You also had community meetings that the scientists organized in which they all went up to do presentations, and the scientists described to me that they packed up all of their PowerPoints and their flipcharts, and they went up to talk to people about the studies because the community had said that they wanted to know what was going on. And then they would get up there and nobody would come to the meetings, and so that was one of the things when I talked to the scientists they wanted to know why didn't anyone come to these meetings? And when I did interviews with community members a lot of them said, well, we thought, you know, it was going to be a boring meeting with scientists and I wasn't going to understand what they were saying, and I didn't want to look stupid. I'm not going to ask a question in front of all those people and show that I don't know anything. And so that wasn't the right setting, it was sort of a too big of a setting. And when I asked about these letters that they had gotten back in the mail, the people said, well, oh, some people were very happy about that, to get that result back, and other people didn't understand it, and they found it confusing. One woman was sort of insulted that somebody had come to her door and taken all this time to gather the data from her, but then hadn't taken the time to come back and explain to her what those results meant. So what I was hearing from people was that rather than this very individualized report back or this very huge broad community-wide report back, that maybe a better model would be this idea of a family report back. So getting people together, having a family meeting, as a couple people suggested, and reporting the results in that context, because this is the setting where people were more comfortable to receive information, so this idea of targeting a social body rather than an individual body. So this is the quote that Katsi referenced earlier, about this idea of a family as a thinking body, whose comments then should be fostered in any health communication and by any practical means. And so when Katsi talked about this new push for centering pregnancy and centering other aspects of healthcare, there's a notion here that environmental health research can also be centered in that way and reported back to the community in that way. So where is Akwesasne now when it comes to the environmental contamination? People have considered it, or the EPA and GM have considered it pretty well, sealed up and done, but part of anytime that you decide to leave the waste in place and cap it a lot of times community members are not happy, you know, indigenous people want more of a seven generations' viewpoint here, which does not include indefinitely leaving a giant mound of PCB-ladened waste in the land directly adjacent to the reservation. So Larry Thompson decided to take matters into his own hand last summer and [inaudible] and gained a lot of attention in that way. They were in the process of carting off the debris from leveling the General Motors plant, and so he thought he would just add some of this into those railroad cars to be taken away. He was arrested and those charges were dropped this past year, but it was his way of trying to bring attention to the fact that while the EPA may consider this kind of a sealed and done case that the community is not happy that that contamination is still there. So why is this research so important to focus on hazardous waste sites in the American Indian communities? Because health issues are already above and beyond what they are for populations in Native communities, and they're sort of the lowest cancer survival rates among any populations in the U.S. Some of that is not having access to the right healthcare, but you want to make sure that people aren't going to be exposed to additional cancer-causing contaminants if they are living in communities where there are other health problems happening. There's also the cultural impact that's not always considered to the extent that maybe it should be in environmental cleanup, and so you have subsistence and cultural impacts from these contaminated sites. That was one of the things that we talked about at the symposium, that Katsi mentioned, that we wrote this paper up about this idea of environmental reproductive justice, so bringing together these concepts of environmental justice, you're looking at communities that are disproportionately burdened by contamination and also then how that impacts reproduction, and not only in the sense of are women able to have babies, in the case of Aamjiwnaang are they able to even have boy babies, but also to what extent are people able to reproduce culturally informed tribal citizens. And so if you're living in a community but you can no longer eat the fish, so that aspect of the culture where boys are going out fishing with their grandparents is lost, where girls are no longer able to go out and pick berries with their grandmothers. If you're concerned that your sweat rocks are contaminated or that your cedar is contaminated, so that's impacting your ceremonies, this is also impacting cultural reproduction. And so maybe you're able to live like American suburbanites and not touch the environment around you, in that sense are we really able to reproduce tribal people in that sense. And so a lot of communities are asking for a seven generations' perspective, so more stringent cleanup standards that aren't leaving things lurking under the ground for the next generation to then have to deal with. So these are some of the references in the talk. I've got two slides here, so if anybody is interested in some of these different articles, please let me know and I can try to get those to you. Thank you very much. Liam O'Fallon: Thank you very much, Elizabeth, for that wonderful presentation. Here's a question for both the presenters: are there any other Native American tribes in the southeastern states addressing the same issues that you have presented on? Katsi Cook: I can add that in working with the eastern band of Cherokee Indians, again, in reproductive health to with a long-term vision, their long-term vision of restoring birth to their community. At a recent stakeholders meeting in Cherokee Choices, which is a program of their Health Department, there was a discussion of creating a nurse/family partnership program, which is a well-researched, evidence-based program that is national in the U.S. And in laying out the program of these nurse visitors the Health Department for North Carolina mentioned that the nurse visitor would provide environmental health information to each individual mother in her home. And these are first-time moms, first-time pregnant [inaudible]. And it was a very superficial piece I thought. And so the issues in Cherokee country are the issues throughout Appalachia. They're fighting gas exploration and also have atmosphere deposition of mercury from coal-fired power plants, not only in the Midwest but from China. And in just about every restaurant in the community you can have a meal of brook trout. And so asking of their Environment Division the data in the brook trout, they hadn't done any mercury data in their fish for the last 20 years and weren't familiar with any data from state in terms of the atmosphere deposition of mercury. And so there are gaps in the data and in mostly in the community's knowledge about environmental exposures to where I would say that, of course, tribes in the southeastern states are dealing with environmental contamination issues. The Houma of Louisiana, for example, are the forgotten community when it comes to the BP oil spill in the Gulf, that their environment has been devastated to the point where they can no longer continue in their traditional ways of accessing protein-rich waters of their traditional diet. And it's one of the communities that will be discussed in the report in fostering environmental justice in indigenous communities. So absolutely, the Seminoles of Florida and the issues of that Theo Colburn documented in the Everglades of endocrine disruption in wildlife. One of the lessons from Akwesasne is that the first sites of inquiry in any host system is in our relative species, the turtles, the fish, the frogs, the moles, the [inaudible] going up the food chain, and you're going to see that carry into the human species. And so I would say every tribe in the southeast has environmental justice issues. Thank you for that question. Liam O'Fallon: Thank you, Katsi. Elizabeth, do you have anything else to add? Elizabeth Hoover: No, I think Katsi has pretty well covered that one. I can think of tribes in the southwest and in the northwest who are also dealing with contamination, but I don't have anything, anybody else to add to the southeast. Liam O'Fallon: Okay, Katsi, we have another question for you can you explain more why trauma induced care is important to Indian country? Katsi Cook: Well, of course, the evidence of historic trauma, which is from the policy of -- the U.S. federal policy that came out of the Civilization Regulations of the late 1800s, where Native children were literally abducted from communities and put into boarding schools. And this was a phenomenon throughout North America, Canada and the U.S., and in some communities in Canada, for example, the RCMP literally pulled up in gunboats and took children and forced them into boarding schools, and this has been very well documented, not far from here in Washington, D.C., Carlisle, Pennsylvania, Carlisle Indian School, where many of the elders in my community, Akwesasne, near the same community that we've been describing, attended school. And so when we began to take care of our own people, in about the '70s, a new generation of educated Mohawk professionals began to do the tasks of medical care to the point where now in our clinic from the medical director to the nurse practitioner, to the nursing staff, to the health department head are all Mohawk people. We began to notice these difficulties in parenting in inability of people to emote, to connect, and we did a body of research, focus groups and maternal and child health, and began to see that stress levels that mothers were experiencing were really high, and they considered these stress levels to be normal. And so we began to think about how we were delivering healthcare, and in the recent discussions across the country on how healthcare needs to be revised we began to put together the pieces. And so trauma informed care is a real important moment in the revision of our healthcare and in all of the systems of care in our community. Universal precautions, for example, is a core fundamental concept of trauma informed care that presumes that everyone in a human services setting has been exposed to abuse, violence, neglect, or other traumatic experiences. When you look at the image in Elizabeth's slide of the Mohawk man, who is digging up the supposedly remediated GM site, the family that he comes from has been traumatized by living directly adjacent to a Superfund site that continues to be a threat to their family. And so you take these cumulative impacts on every level, the historic trauma and then look at the multigenerational impacts, where people have been numbed emotionally and those experiences show up when we do the adverse childhood experiences questionnaire. And I encourage everyone on this webinar to look at that CDC site and look at that questionnaire and you begin to understand more deeply the relationship of violence on many levels so that our experience of trauma is at the level of the nervous system. And so even in working with my reach team on the reregistration of chlorpyrifos and organophosphate, where there's wonderful evidence that shows the impact of pregnant moms who have been exposed to this pesticide in their homes, that this organophosphate causes impairments in neurological development of the fetus. And they've tracked in studies these impacts to show into the seventh year lower IQs, ADD, ADHD, elements of autism spectrum disorder so that these neurological impairments are also implicated in incidences of violence and poverty. And so, as a midwife, knowing how all of this is connected, I observed in my practice very early on that a woman who has experienced sexual trauma in her life may exhibit difficulty in giving birth, and this is because of the connection at the nervous system level of the Vagus nerve, the old brain of the human development where the voice box, the larynx and the nerves at the cervix are connected by the polyvagal network. And so just the bottom line is trauma is experienced at the level of the nervous system and so there are many exposures in the environment, not just from industrial chemicals and toxic chemicals, but also to federal policies that disconnected children and their ability to develop as members of a nation has resulted in a generation of traumatized people. And so Kononkwe Council has steadily educated our tribal leadership in conversations, showing how violence against women and these environmental issues are directly related. And so trauma-informed care is an important foundational revision and if we adopt that in environments and the delivery of a broad range of community services, including medical care, mental health, substance use, employment support, domestic violence, sexual assault, peer support, such as Centering Pregnancy, in all of these environments we seek to change the engagement of community women from their lived experience without legitimacy or power, which is a classic sign of many environmental justice communities, this feeling of we have no power over this debate in the country between corporate society and human health. When I hear Congresspeople from the west arguing that we need to increase coal mining for jobs, I don't think they realize that the cost of that are these neurological impairments, the rewiring of the brains of the next generation. They haven't seen the scientific evidence, and I think we need to be better communicators to the public about the price and the true cost of energy development. And so again it's a long way away from the issue of historic trauma, but this now, too, the rewiring of our environmental landscapes, of our local foodscapes, meaning food sources from within your environment, are all part of the landscape in which our youth, our children make their dietary and physical activity decisions, their relationship decisions, how they relate to one another. And so given all of these impacts we're doing the best that we can to take a lifecycle approach from supporting the prenatal mom into the puberty revision, where we have a clan mother who is leading [all halogo] rites of passage for our youth, so that they can better understand these histories and be educated in Mohawk thinking, in the language, so that they can better cope with these issues of environmental contamination. The environment is everything, it's all interconnected, so trauma-informed care is a real important foundational revision for communities, and so that's the best I can do to explain that. Thank you for that question. Liam O'Fallon: Thank you very much for that answer, Katsi. Elizabeth, I have a question for you: who makes up the human subjects review board in the First Environment research projects? Elizabeth Hoover: So the review board was one of the Akwesasne Taskforce Research Advisory Council, and that was members of the community. So their goal was to bring together people that represented all of the different tribal governments, the [inaudible] jurisdictionally, [inaudible] the portions of that community are claimed by U.S. and Canada, and so you have a tribal government on the side that Canada has claimed, the Mohawk [inaudible]. You have the tribal government on the site the U.S. claimed, the St Regis Mohawk tribe, and then you have the traditional government, Mohawk Nation Council of Chiefs. And so the idea was to bring together people from all of these different organizations, as well as the people in the community, and that's who kind of formed this Research Advisory Committee. Liam O'Fallon: Excellent. Thank you. So here's one that I believe, Katsi, it's how are doulas utilized in the work that you're doing? Katsi Cook: We are just now starting to train a generation of doulas. Doulas are different from midwives in that they don't perform medically controlled acts, they're not doing physical assessment, but doing support of the mother educationally, socially, and there are specialties within the doula training. And so what's important, there is a www.doulasofnorthamerica.org site, where you can get information on what doula care involves. This organization was founded by Marshall Klaus, his wife, Phyllis, and other people who are expert in the care of mothers. But it's interesting to me that Marshall Klaus in his research on mother/infant pair bonding saw in Guatemala the indigenous people that if you just have one woman in the room, one individual in the room while a mother is in labor the incidence of interventions in her labor and delivery go down by a significant percentage. I think it's about 20%. However, if you add an individual supporting the mother, hands-on, talking to her and being a support between her and the staff that those intervention rates drop even more. And so along with this idea of support, again, the way our nervous systems are wired as human beings, as mammals, the doula understands how the woman's body works, how the nervous system is programmed for pair bonding, for supporting the natural, the normal physiology of birth which is, again, going back to understanding neurotransmitters and how the body evolved to become pregnant and deliver healthy babies and to support the development of healthy babies. And so doulas, one of the things that I love working in Indian country with doula programming is we start the education of the doulas from a traditional indigenous perspective, again, beginning with the language. For example, in Mohawk the word for the number four, [skiali], it means it's complete. And I love how in a writing a policy paper with the Society of Obstetricians and Gynecologists of Canada, their policy in working with aboriginal or indigenous communities, one of the people working on the document said, well, Katsi, not everybody believes in this idea of the four directions. And I thought, well, no, it goes back to this image that Elizabeth showed, the difference between indigenous knowledge and so-called scientific knowledge, that it's complete before skiali. I think of the four based pairs of the DNA, the four physical laws of the universe: gravity, electromagnetism, the strong and weak forces of the nuclear bond. We are all about four in this universe, and so that's how that translation from what we know in our language and from what we practice from a research-based practice framework usually land in the same spot clinically and as human beings. And so doulas, along with midwives, along with other healthcare professionals, and in my own community we have the heroine in our family, a nurse practitioner who has taken our protocols of peace. We have traditional going along with this peace, justice and righteousness in our protocols for research is a protocol called our condolence ceremony, where we deal with the trauma of visitors to our community having traveled through briars and brush and difficult track to get to our community. We will use this with clients and the [partridge house] alcohol and drug program. We have a residential treatment program in our community, and she's revised the intake message to clients so that the trauma-informed care piece changes the conversation from what's wrong with you to what happened to you? And so we understand again that saying the wrong thing in the wrong tone of voice you can increase this feeling of dejectedness, of rejectedness that traumatize individuals feel. And so doulas are a big part of a respectful, kind, culturally safe relationship with the mother and her family and her baby so that we know that the foundations of human health are formed in the uterus, in the womb, and in the pair bond of the mother and baby in infant development. And so we focus on this aspect of our human journey through life, and doulas are becoming a significant part of that as shifts in professional you know, we don't have enough obstetricians in North America and midwives are beginning to have greater scopes of practice so that doulas are filling in an important space of care for the mom, her baby and family. Liam O'Fallon: Excellent, and thank you very much, Katsi. One of the questions comes in in terms of similar types of work, has there been any studies with the tribes in upper Great Lakes, similar to the breast milk study? So we've had the southeast and the Great Lakes? Katsi Cook: The upper Great Lakes, one of the fundamental researchers into breast milk contamination I'm trying to remember the name of the researchers but, yes, in Michigan, when I did a literature review back in the 1980s, Walter Rogan in North Carolina, but now you're asking about the Great Lakes. Elizabeth, can you remember the name of those researchers in Michigan that looked at -- it was PCB contamination of mothers' milk in northern Michigan. And I remember Sherry Hatcher did a paper, she's a psychologist, on the impact of the mothers in that cohort on the psychology of breast feeding, having learned that their breast milk is contaminated. And so I read those papers in preparation for going to my clinics and health directors in talking about doing a breast milk study in my community. And so those were foundational papers in the field. Elizabeth Hoover: One by [inaudible] [Copeland and Tilton], was that the one you mean, do any of those -- Katsi Cook: No, I can't recall their names, but it's in the literature. And, yes, there is some breast milk data from the Great Lakes, but it's very old and it comes from a time when PCBs, we didn't understand that there's 200 different congeners, so. Liam O'Fallon: Well, looking at the time I believe that we have come to an end with our questions, and I would like to thank one last time our presenters for the excellent session today. I'd like to also thank Dr. Symma Finn for her organization of this webinar, as well. Before people log off, just a couple of final announcements. Keep in touch with PEPH through our various, through our listserv and our PEPH e-news. On the screen you will see the address for signing up to receive that. In addition, there are some upcoming webinars that will be of interest. PEPH has a monthly webinar. You can learn more from our website. And we also have one next month on environmental, or actually the end of this month -- Environmental Health Disparities, that will be September 28th. And then in October we will have a webinar featuring children's environmental health issues. And then in October and November the EPA National Center for Environmental Research will be having two webinars focusing in on Native American issues, as well, and environmental justice. Finally, you can learn more about the U.S. Department of Health and Human Services environmental justice activities from their Web page, shown here on the screen. And, finally, thanks, again, to our presenters, Katsi Cook and Elizabeth Hoover, and Symma Finn for organizing the session. That concludes our webinar today. Thank you for participating. I hope you will join us in the future for additional PEPH webinars. Have a wonderful day.