Daily Life | IBD | Information | Ostomy
A person’s voice as an advocate is the greatest instrument in speaking for millions of others to acknowledge an achievement, combat a stigma, or help pass a law to protect the rights of people across the country. A person’s voice is more than the sound when he or she speaks. It is the passion, drive, and determination that can be heard and felt in between the words a person says. Each person has a voice as well as a story.
Since being diagnosed with Crohn’s disease eleven years ago, I have discovered my voice as an advocate for Inflammatory Bowel Disease (IBD) awareness.
I was diagnosed with Crohn’s disease during the summer before sixth grade when I was 11 years old. Flare ups of my disease would sometimes cause me to miss school because I was at home running to the bathroom every other minute, sometimes going as much as 40 times in one day. I often had little warning of these attacks and never knew how I would feel the next day.
Before finding quality medical care, my case of Crohn’s almost killed me, leaving me with a perforated colon that required emergency surgery and healed while I had a temporary colostomy. After my emergency surgery at the end of my freshman year, I had two more major intestinal surgeries before I graduated from high school. Although I have now been in remission for at least seven years, there was a time when everything seemed less stable. I especially never could have predicted what would happen to me just a few years after I was diagnosed.
When I was 14 years old, my mom and I were shopping at a large retail store when I realized that I needed to find a restroom as fast as possible or else suffer from having an accident in the store. When we begged the store manager for permission to use the employee-only restroom, he denied my request. Claiming he was making a “managerial decision,” he continued to deny me access as I was crying and bending over in pain. Unfortunately, time ran out. Although no one knew about my accident, I felt ashamed, humiliated, and helpless.
As my mom and I left the store, she promised me that this would never happen to me or anyone else again. I agreed, and soon after, I knew just who to call: our local Illinois state representative. I had met her while on an eighth grade class field trip just two months before when she stood outside the Illinois House floor and explained to my eighth grade class how a bill becomes a law and that an idea for a law can come from anyone.
Within months, I was helping her write a bill that stated that anyone with a medical emergency must be allowed access to an employee-only restroom. In 2005, the representative, my mom, and I traveled to the Illinois capitol and testified in front of a committee in support of the bill where it passed unanimously just as it later did through the Illinois House and Senate. Former Illinois Governor Rod Blagojevich signed the bill into law in August 2005. The Restroom Access Act, otherwise known as Ally’s Law, became the first of its kind in the nation.
Since then, I have helped guide people in other states who are interested in its passage. Due to the efforts of people across the country, the law has now been passed in thirteen states including Colorado, Connecticut, Illinois, Kentucky, Massachusetts, Michigan, Minnesota, Ohio, Oregon, Tennessee, Texas, Wisconsin, and Washington. It is also pending in several more and is being considered on a federal level as well as in other countries. Stores, including the retail store where I was denied restroom access, are changing their policies and installing public restrooms.
Despite these advances regarding restroom access, there are still many issues surrounding IBD that must be solved. Not everyone, however, is ready to use their voice as an advocate, which is often due to the symptoms of IBD and the effects of having a condition that some see as not socially acceptable to discuss in public. It is important that we combat the stigma and show that one voice can make a difference.
If each of us gained the confidence to speak out on the challenges that limit so many, the democratic ideal of what it means to be an American would be fully realized. All sorts of people would be transformed into dynamic participants in a culture of empowerment. In that culture, each of us, no matter what personal challenges we face, could fully realize our own potential without limits.