Photo by Tim Mossholder on Unsplash

Photo by Tim Mossholder on Unsplash

IBD is hard. Between the all-consuming fatigue, bathroom runs, hospital stays, food restrictions, and invasive procedures, it is easy to feel powerless. While the disease itself can be difficult to control, the environment around us can either help or exacerbate our pain. For a long time, people were silent about the “bathroom disease,” leading it to be largely overlooked. Thankfully, some women have begun speaking up and creating a better world for those with IBD.

What is the Restroom Access Act, and Who is the Powerful Woman Behind it?

One such woman is Crohn’s warrior, Ally Bain. While shopping with her mother at a large retail store one day, Ally felt that sudden, painful urgency with which we are all too familiar. Since there were no public restrooms available, she explained her condition and asked the manager to use an employee bathroom. He refused her access, even as she curled over crying in pain. Baine ended up having an accident. Instead of walking away with shame and sweeping the incident under the rug, Baine and her mother contacted their local Illinois State Representative Kathy Ryg to draft a bill allowing people with medical conditions to use employee-only restrooms.

In 2005, Baine, her mother, and Ryg headed to the Illinois capital, where the brave teenager testified in front of a committee to support the bill. The committee, the Illinois House of Representatives, and the Senate passed the bill unanimously. In August 2005, former Illinois Governor Rod Blagojevich signed the bill into law. This is quite an impressive accomplishment for a teenager. Nevertheless, Baine did not stop with local politics. She helped people in other states advocate for The Restroom Access Act. Over a dozen states have since passed the Act, including Colorado, Connecticut, Delaware, Illinois, Kentucky, Maine, Maryland, Massachusetts, Michigan, Minnesota, Ohio, Oregon, Tennessee, Texas, Washington, and Wisconsin. To read more about Bain’s work in her words check out her blog.

How can I Speak up for Myself and use this Act?

The Restroom Access Act falls under the Americans with Disabilities Act of 1990, which protects people with disabilities from discrimination. If you have IBD or an ostomy and live in a state with the Restroom Access Act, you have the legal right to use an employee restroom as long as there are two or more employees at the store. To do so, you will need to show proof of an eligible medical condition. This may take the form of a document signed by your physician or an “I Gotta Go” card from a related organization such as Girls With Guts. The specific eligibility requirements vary by state. You can find your state’s guidelines here.

If someone denies you access to the restroom, you should start by calmly explaining that you are having a medical emergency requiring immediate restroom access. While it should not be our responsibility to educate people who do not know about IBD, you can always catch more flies with honey. If you explain your condition to a reluctant business owner calmly, they are more likely to be understanding of you and future IBD warriors who pass through their store. Make sure that you politely emphasize your legal right to use the bathroom and warn the person about potential legal action.

If your request goes unresolved, you can file a complaint with your local law enforcement (after finding a bathroom, of course!). If you do not get an adequate response from your local law enforcement, contact your state legislature. You can find the names of your local legislatures on OpenState.

Photo by Bill Oxford on Unsplash

Photo by Bill Oxford on Unsplash

The punishment for violating the Restroom Act varies from state to state. In Washington, a first-time offender receives a warning letter. If the company refuses access a second time, it is considered a class 2 civil infraction. Massachusetts issues a $100 fine to violators. The fine is doubled after the second violation.

In addition to taking legal action, you might want to consider writing a letter to the business that denied you access to the restroom. This is especially important if they are a chain store or franchise. Respectfully tell the management or CEO your story, express your disappointment in how their store handled your situation, and explain why it is crucial for the business to be accommodating in the future. This is a great opportunity for you to spread some IBD awareness! Hopefully, your letter will prompt management to remind all franchises of the importance of obeying ADA and respecting all customers.

What can I do if my state has not passed the Restroom Access Act?

Some states have not passed the Restroom Access Act. In such states, business owners have contested the law with largely groundless claims that people without medical conditions would exploit it or that it would create liability issues.

If your state has not passed the Restroom Access Act, do not despair. Follow Ally Bain’s example by speaking up and demanding reform. One way you can advocate for change is by writing to your local legislature. Introduce yourself and tell your story. Explain how the Restroom Access Act will help you and others with IBD. Your letter might be more convincing if you share a personal experience. Try to be succinct, but make sure that you get your point across.

Find your legislature! 

Social media also provides a powerful platform for advocacy. Tell your friends and followers why it is important for your state to pass the Restroom Reform Act.

What are some other ways that I can advocate?

You can be a trailblazer for those with IBD everywhere. There are a number of important issues facing the IBD and chronic illness community, including health care access, increasing workplace accommodations, and reforming step therapy.

After learning more about Baine’s story, I have decided to take action on one of the IBD issues that hits home for me: reforming step therapy. So, once I close out of this document, I am going to open a new one and write a letter to my local representative about why we must reform step therapy. Maybe I can blog about that story another day.


• About The Author
Kate Shannon holds an MA in American Studies and a BA in History and American Studies. She is currently working as a high school special education teaching assistant while taking classes towards an MS in Student Disability Services in Higher Education. When she is not working, Kate loves reading, visiting history museums, practicing the clarinet (a new hobby she picked up after her diagnosis), volunteering with children and animals, and doing yoga. Kate was diagnosed with Ulcerative Colitis in 2018 and had her colon removed in 2019. She is a j-pouch patient who is extremely grateful for the new life her surgeries gave her.
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