In 2005 The Restroom Access Act became the first law of its kind in the nation and was unanimously passed by the Illinois House and Senate to ensure restroom access at retail stores for those with medical conditions. The law states that if a retail establishment does not have public restrooms, those with medical conditions, such as Crohn’s disease, ulcerative colitis, among others, that require access to a restroom in an emergency must be allowed to access employee restrooms on site. This all stemmed from an occurrence that happened about 6 blocks from where I currently live. Ally Bain, who at the time was 14 years old, was here in Chicago, when she experienced symptoms so many of us with IBD have felt before, a sharp pain in the side bringing about the onset of urgency and panic. When this happens, attempting to locate a bathroom is crucial and you know you only have a few minutes before things are going to go south, fast. This countdown comes quick. Having to locate a restroom during this time, or having to politely ask for accommodation while your body is wreaking havoc on you just intensifies the stressful situation and I cannot imagine during all of that being told “no”. But that is what happened.
She requested access to the bathroom at a department store that didn’t have public restrooms but was denied access, leading to an embarrassing public ‘accident’ but one that would change our entitlement to restrooms completely. A store manager, despite being told by Ally’s mother she had a medical condition and being presented with a medical card, said she was not able to use the store’s employee-only bathrooms. We have all been there with Crohn’s, and I am so sorry this had to happen to her at this age. I also cannot imagine how stressful this must have been for her mother. My mom touches on this stress and guilt in her post tomorrow, by the way.
A year later, after working with Representative Kathy Ryg, Ally and her mother worked to introduce Ally’s Law aka The Restroom Access Act, leading many to question, how have we not had this before? I remember hearing about this occurrence and thinking wow, I would never have the guts to tell that story, but she owned it. She unveiled one of the worst things about the disease and made a difference for A LOT of us. In the 12 years since this was enacted, a number of states have chosen to follow suit – including: Colorado, Connecticut, Delaware, Maine, Massachusetts, Kentucky, Michigan, Minnesota, Ohio, Oregon, Tennessee, Texas, Washington, Wisconsin, and as of June of 2017, I am so happy to say – New York state as well. While I believe this should be the law in every state, I am happy to see that progress continues to be made. If you live in a state were the Restroom Access Act is not enacted, here are some more resources to educate about the law, as well as how to advocate for change and work with your legislators to bring this issue to the forefront of their agenda. There is no reason anyone needs to go through what Ally went through while just trying to carry out the typical daily activities of someone their age.
Today there are restroom access cards like: Crohn’s & Colitis Restroom Request Card you can order online so that you don’t have to explain yourself every time this situation comes about. In the event that someone entitled to this safeguard is denied access to a restroom, fines and punishments for noncompliance have been implemented, but vary by state. In some states, storeowners can be fined $100 for the first violation, and $200 for the second, while other states will issue a a class 2 civil infraction for offenses. Note, there are exceptions to the law, retail stores with less than three employees are exempt, because of the possibility of leaving the store open to theft.
Living in Chicago currently, I have frequently experienced the same stress from time to time. I often joke about how quickly I can locate a restroom in almost every building we go in. I have had to ask for accommodation in places that do not have a visible restroom to the public. I am thankful we are in a time when people are more understanding and also probably a little concerned about getting fined for denying me access. But, none of that is fun for me. I have had to challenge some store employees about letting me use the restroom but have only had to actually show one the restroom access card. Like many other IBD sufferers, at times it has inhibited me from doing certain things when I don’t feel well or caused me to alter my schedule so that I don’t eat before going somewhere new. I understand that these invisible illnesses make things confusing, however, continuing the conversation is critical to helping those unfamiliar with the daily struggles understand and help change the landscape going forward.
Next up: Guest Post from Lore Hynan about having a child diagnosed with Crohn’s disease!