Sister Synergy: Together Everyone Achieves More
Jana J. Peterson, MPH, PhD and Mia Peterson
Mia Peterson and Jana Peterson are sisters. Mia has Down syndrome and is a nationally-recognized disability advocate and public speaker with an interest in health and wellness. Jana is a public health researcher specializing in health promotion for people with disabilities. They collaborated on a joint keynote address attended by participants from two conferences, the State of the Science Conference and Celebrate Wellness, a conference for Oregon residents with disabilities.
The theme of the sisters' keynote was collaboration between people with disabilities and health researchers and professionals to improve the health of people with disabilities. They drew upon Mia's experience studying the "Seven Habits of Highly Effective People" by Steven Covey. Mia has helped teach a program on the Seven Habits of Highly Effective People for people with developmental disabilities. Mia and Jana referenced Habit Number 6 - Synergize, which emphasizes using teamwork to achieve effectiveness. The habit describes teamwork as an essential tool, because working together can greatly enhance results of individuals. Mia and Jana believed that using this keynote to tell their shared story created synergy by making a bigger impact than either could make on her own.
Mia and Jana began their talk by telling about their relationship and each of their careers and interests. Mia emphasized the importance of self-advocacy, a supportive family, following her dreams, and being included in decisions that affect her life. Jana described the many positive impacts that her close relationship with Mia have had on her life, from learning to value diversity, to becoming passionate about social justice, and ultimately to influencing her choice of career.
The following is an excerpt from the keynote address, describing the importance of teamwork and synergy toward the promotion of health for people with disabilities.
My academic training is in public health. I received my Master of Public Health degree and PhD in Community & Behavioral Health from the University of Iowa College of Public Health. My focus area was health promotion for people with disabilities. I find this work very inspiring, and I am fortunate to continue it in my post-doctoral position at OHSU.
My training at the University of Iowa also heavily emphasized Community Development and participatory research methods, including Community-Based Participatory Research. I worked at the Prevention Research Center at the University of Iowa for five years, where we conducted Community-Based Participatory Research with the communities of a rural Iowa county. For the non-researchers in the audience, this type of research focuses on answering research questions of importance to the community and involving community members in every stage of the research process. In other words, this type of research focuses on teamwork between researchers and people who make up the communities being researched. I am a strong believer in the philosophy of participatory research, and believe that community-focused research -- as well as advocacy work, and policy work -- should involve members of those communities as researchers, advocates, and policy makers. Mia has been lucky to be involved in many participatory projects, representing people with disabilities as a researcher, self-advocate, and policy influencer. Mia will tell you about a few of those experiences.
Besides being a speaker and writer at Capabilities Unlimited Incorporated in Cincinnati, I became a researcher. I worked with Dr. Laura Meyers from California on a project about how people with disabilities communicate and learn language. With her help, I wrote my very first grant application, and it got funded! This research study was all about people with Down syndrome learning how to use language best. I got to present the results of this study at a keynote at the National Down Syndrome Congress Convention to about 1,000 people in 1997. I was the first person with Down syndrome to give a keynote at the National Down Syndrome Congress Convention.
Next, I worked on a research project on fitness and nutrition with Joan Medlen from Portland, Oregon. The study was called "Healthy Lifestyles for Persons with Down syndrome: What do we know?" We learned there are many reasons people make choices, like the media, friends, teachers, and support people.
I have also been involved with policy. In 2000, I testified for a Senate hearing on the 10th anniversary of the Americans with Disabilities Act. I talked about how the ADA has helped me and other people with disabilities, and I also talked about other policies that would help me even more in my life. I could tell that they thought the things I had to say were very important. It was awesome!
Recently I was invited by Madeline Will of the National Down Syndrome Society, to speak for a committee briefing regarding the Kennedy-Brownback Bill. If the bill becomes a law, it will provide $25 million to develop materials that will give unbiased, accurate information about Down syndrome, to families, doctors, and other health care professionals. The materials would emphasize the benefits a person with Down syndrome brings to their families and society.
Mia has offered great examples of teamwork in research and policy advocacy. In particular, I believe her collaborations with Dr. Laura Meyers and with Joan Medlen truly exemplify the spirit of participatory research.
When I learned about participatory methods in graduate school, I was taught that research should begin with a question of importance to the community, and that collaborating with members of the community as empowered and equal partners throughout the process should be the emphasis. I also learned that the practice of true community-based participatory research is difficult and rarely occurs in its authentic form. There are a few good examples of participatory methods in the disability and health field of research, but for the most part, studies do not start with questions arising within the community or involve people with disabilities in equal research partnerships. For the studies that Mia told you about, she was involved in writing grants, in developing survey measures, in collecting and analyzing the data, in presentation of the data, and in authorship of papers. (I wish I had been able to put a publication on my CV by age 26! I bet there are others in the audience who feel the same way).
Community-based Participatory Research: a collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings. CBPR begins with a research topic of importance to the community, has the aim of combining knowledge with action and achieving social change to improve health outcomes and eliminate health disparities.
- WK Kellogg Foundation Community Health Scholars Program
I think the co-investigators on these research studies would say that the information they gained from their studies would not have been the same without Mia's input and collaboration. Questions were posed differently, adults with Down syndrome participated and engaged more fully, and results were interpreted differently because Mia was involved.
I know this is true for Mia's other health-advocacy activities. One good example of teamwork to improve health of people with disabilities was Mia's recent involvement in the movement to pass a bill to improve prenatal diagnosis counseling for parents expecting a child with Down syndrome. A number of individuals came together to make this happen. Dr. Brian Skotko performed a number of studies on the counseling experiences of women who receive a diagnosis, providing important and persuasive data. The National Down Syndrome Society championed the effort, and two Senators with special interest in the topic signed on. But Mia and others with disabilities provided powerful testimony about their experiences and viewpoints. Mia and I think that the combination of researchers, advocacy groups, policy-makers, and people with disabilities provided clear synergy to move the effort forward.
I have worked with people with disabilities in my work. My dissertation did not use community-based participatory research, but people with disabilities influenced the framing of the research question, development of the measure, and interpretation of the results. I am also lucky to have a great personal consultant in my sister. I found that collaborating improved the research by providing multiple valuable perspectives, building on divergent strengths, and increasing the relevance of the work to the population it represents.
Thus far today, Mia and I have focused on professional collaborations. Before we close our talk, Mia wants to share a few examples of how she has practiced teamwork to improve her own health.
I also try to practice teamwork for my own health. Throughout my life I have learned something. I used to think that if I wanted to be more independent, all I had to do was learn to do more things on my own. Now I know the most important thing we have to learn is when to ask someone else for help. Remember: Together Everyone Achieves More. We all need other people in our lives. Working with someone you trust makes all the difference.
I have needed help from others because I don't drive. Sometimes it's hard for me to get the transportation I need. I try to take para-transit, but it is late - a lot. That is frustrating! In Ohio, I had a hard time finding a dentist that would take Medicaid. My dad had to help me. We finally found a dentist, but he was not in my neighborhood. A case worker or my boss drove me to my appointments. Sometimes I wish that transportation services were easier. I don't like to rely so much on other people to drive me to appointments. I also wish that all health providers took Medicaid, so I could see the dentist in my own neighborhood.
Mia and I agree that practicing healthy behaviors takes teamwork and support from others. It is a good practice for every person to work with others to start and maintain healthy habits. But it is unfortunate that there are so many barriers that make it difficult for people with disabilities to be healthy. Two of Mia's primary barriers have included transportation issues and finding dental providers that accept Medicaid. These barriers have made it necessary for Mia to need more help from family and friends than she would otherwise need. For many people with disabilities, especially people without strong social support networks and other resources, these barriers make accessing care exceedingly difficult or impossible. Mia and I both think that this is a clear injustice for people with disabilities. Public health is often defined as "fulfilling society's interest in assuring conditions in which people can be healthy." Our society is clearly failing to assure conditions where people with disabilities can be healthy. This is a big problem, more than any of us in this room can solve alone. That is why it is important that we identify where we can work together, practice teamwork, and synergize. Because together we can achieve more.
Mia and Jana Peterson closed their comments by suggesting that all the conference attendees of the State of the Science and co-occurring Celebrate Wellness conferences talk to each other to think about ways to form true collaborative partnerships. "This can start today," they said. "Today is an opportunity. Practice synergy -- as a habit."