Advocacy can take many forms. There is individual self-advocacy when, for example, a person with IBS communicates with a medical provider or employer about his or her needs and works to solve day-to-day issues that arise. There is also systems advocacy, which is focused toward making broad changes that affect a large group of people and specific issues of concern. On the local community level, that might mean persuading a hospital or social service agency to sponsor a support group or IBS education program. On a societal level, advocacy takes on regional, national or global significance such as HR 2239, currently in the U.S. House of Representatives.
Systems change usually requires the cooperation of many individuals and groups working diligently over a long period of time. Often, systems advocacy for any issue or interest group, not just the IBS community, involves much relatively quiet and unseen negotiation with the powers that be in any given context. Sometimes the approach is more visible, such as public rallies and civil disobedience. If we look to history for the lessons of civil rights for African-Americans and other people of color, the women’s rights, GLBT rights, and disability rights in the U.S. and many other struggles for political and social recognition by various groups in other countries, we often see that both of these approaches and everything in between have been steps toward progress for the groups in question.
Historically, people with IBS and the IBS community have been fragmented. Many people with IBS do not have access to peers with IBS or knowledge of our forums, organizations or research facilities. Among those who are knowledgeable and involved, there have often been philosophical, political or personality differences– as happens in any community. The IBS Impact founder, as a relative newcomer to the ranks of people with IBS, continues to call on fellow site owners/moderators, organizations and professionals to try to work together– not necessarily to achieve perfect consensus, but to find common ground in the interest of all of us with IBS so we can encourage more of our peers out of the closet and work in a more coordinated fashion. IBS Impact is welcoming of diverse nationalities and demographic groups, experiences, opinions, approaches and issues, whether individual or systems oriented. There is room in the huge and sprawling IBS community at large for all of us who wish to participate. The point is that we do at all.
Advocacy is not always easy. It takes time and effort but it can produce results for those willing to work at it. Advocacy can be learned, even by people who are private and quiet by nature. As one IBS Impact member wrote recently, self-advocacy is “a set of good habits.” Once learned, they become more familiar and easier to use and can reap both satisfaction and concrete progress for us as individuals and as a community.