Irritable Bowel Syndrome (IBS) Advocacy Does Matter
About four or five years ago, when the first concept of a grassroots effort that eventually became IBS Impact in 2010 was taking shape and various people were discussing if advocacy and awareness by people with IBS could succeed, even IBSers who were initially interested would often ask questions like, “What is IBS advocacy anyway?” That question would become the title to one of this blog’s early posts on July 15, 2011. Several of the early members, including the IBS Impact founder, had had long experience in other health and disability rights communities and those of other social minority groups. We tried earnestly to explain tried and true principles of self-education and self-empowerment that had worked successfully for other groups and how we hoped this would help more people with IBS to be open, self-confident and assertive with family, friends, coworkers on an individual level, as well as eventually feel inspired to organize to ask for changes that would benefit the IBS community as a whole: more research, more readily accessible treatment options and physical and mental health providers with up to date, cutting edge expertise on IBS in our own communities, more restroom access laws, more in-person support groups and opportunities for high quality IBS education from the moment of diagnosis– or whatever people felt were the most pressing or personally relevant needs in their own country or geographical region. These were lofty goals to be sure, but not necessarily unobtainable, as many other common chronic health conditions have many of these resources at hand. This bounty did not come out of nowhere, but usually from the dedicated and persistent work, advocacy, financial commitments and media attention of affected people and concerned family members. We aimed to give people with IBS who were struggling reasons for hope and a sense of control when Internet support forums often were full of daily messages of despair. “Nothing works, nobody understands, this is horrible, I am scared, why don’t doctors… politicians… famous people with a lot of money…. the media… do something?” These were valid points and good questions.
Unfortunately, if the few of us IBSers who seemed to be consistently interested in “doing something” came back with the answer, “Because we don’t ask them,” or suggested writing a letter about some IBS-friendly legislation or IBS-unfriendly media attention or financially supporting the IBS cause through existing GI organizations in various countries, most people lost interest and discussions eventually fizzled out. People were generally not willing to act on their natural emotions concretely, especially in a public way. Although things seem to have improved a bit since then, it’s still the case for many IBSers who, to quote Tim Phelan, author of a 2007 memoir of IBS, Romance, Riches, and Restrooms are afraid to “come out of the water closet,” as he was for many years. To a point, this is understandable, as is the fact that those of us who are most severely ill don’t have the energy to function, and those who have very good, consistent symptom control or mild, sporadic symptoms have little incentive or desire to spend any more time on IBS. But that still leaves many of us in the vast middle ground who, for the most part, are not used to thinking of ourselves as a community that can change anything for the better on our own behalf. Many are still caught up themselves in the misconceptions and myths of IBS, and not in a position to educate the public. From the beginning, some IBS Impact members argued, in retrospect, rightly, that basic education of IBSers about their own IBS was just as important, if not more so, leading to a shift, over time, in some of the content of our sites and social media.
Some people with IBS are learning to become receptive to self-advocacy, and slowly, the culture of apathy and treating IBS as a deep, dark secret is changing a bit. However, in some cases, apathy has been replaced by cynicism, “I don’t depend on the system to do anything for me. I try to help people take care of themselves.” (That’s good, but systems advocacy is also, in a way, taking care of ourselves.) and, “This won’t work. Politicians will never do anything for us.” (Some of them already have.) For the last two Aprils, one of the posts on this blog has been a retrospective of what progress has been made in the IBS world lately, including legislation. See April 10, 2014 and April 24, 2013.
Yesterday, July 26, 2014, was the 24th anniversary of the signing of the Americans with Disabilities Act, a broad civil rights law for United States citizens and visitors alike with all types of disabilities. It was not the first disability rights law, nor has it been the last, but it remains one of the most comprehensive. It was preceded by almost three decades of increasing disability identity and advocacy in the country, and it was about two years from the introduction of the first drafts in Congress to the signing of the final version into law by then-U.S. President George H.W. Bush on July 26, 1990. This was the result of collaboration and negotiation among government leaders from both U.S. political parties, and broad coalitions of people with all types of disabilities, families, health and human service professionals, educators and other supporters across the nation. Forms of advocacy ranged from the very private to the very public: calls, letters, legislative visits, rallies, civil disobedience and media coverage. The point is that millions of people came together with common purposes, and, as a community, they did not stop for as long as it took to reach a goal.
The ADA has been a model for similar laws and disability rights advances in other countries of the world, and in 2008, eighteen years later, after many more years of advocacy, the disability community was successful in amending the ADA to clarify the original intent of the ADA’s framers and restore some protections that incorrectly had been eroded by court decisions in the ensuing years. These ADA amendments are of benefit to people with IBS as well, as they made it clearer that the law also applies to impairments of bodily function, such as digestion, or conditions that may come and go periodically. The fight to enforce the ADA and other existing disability laws and public policies in the United States and globally continues, as there is always a long way to go, but the history of the broader disability rights movement, as lived by some current and former members of IBS Impact, is proof that advocacy matters and makes a difference. We do not take it for granted. May the IBS community one day be able to look back on our history in this way and see a similarly major and positive evolution over time.