Public Restroom Access and Irritable Bowel Syndrome (IBS)
UPDATE 5/10/2013: As of April 2013, IBS Impact received information on additional restroom access laws in Maryland and Maine. Please see the May 10, 2013 post.
UPDATE: As of August 2012, Massachusetts became the thirteenth U.S. state to enact a restroom access law. See the August 20, 2012 post for details and a link to the full text of the law in that state.
Because IBS can cause frequent and/or unpredictable need to use a toilet, quick and plentiful access to public facilities is a major concern expressed by many people with IBS. Thus, it’s somewhat surprising that existing laws or resources that may be useful in some countries aren’t often discussed in the IBS community. A post last month by a blogger who goes by the online name of Felicia Fibro spurred exploration of this topic. Here is some information that may assist IBS Impact readers in some U.S. states, the U.K. and Australia.
Felicia, who identifies herself as having fibromyalgia and IBS, posted a video interview she did with Ally Bain and Ally’s gastroenterologist. (Scroll to January 16.) Ally has Crohn’s disease, a type of inflammatory bowel disease (IBD). Several years ago, as a young teenager, Ally had an accident in a store after her request to use the employee restroom was refused, despite her explaining repeatedly that she had an urgent medical need. After that humiliating experience, Ally resolved to do something about it, contacted her state legislator and helped to write and pass a bill to address similar situations. The details of the incident and progress of her efforts have been blogged frequently by the About.com IBD Guide. In 2005, the Restroom Access Act, known popularly as “Ally’s Law,” was signed into law in Ally’s home state of Illinois. Since then, with continued public advocacy by Ally and others, similar laws have been enacted in eleven other states: Colorado, Connecticut, Kentucky (part 1 and part 2), Michigan, Minnesota, Ohio, Oregon, Tennessee, Texas, Washington and Wisconsin. While the exact language describing eligible medical conditions varies in each state, irritable bowel syndrome is specifically mentioned by each of the current twelve states.
There are other minor differences, so please click the linked states above to view the text of the law for a particular state. In general, the laws are similar to the model set by Illinois. Most are also named the Restroom Access Act. Most say that a “retail establishment” must give access to an employee restroom if there is no public restroom immediately available, there are at least three employees (in one case, two) working at the time, and the facility itself or its location will not pose a safety hazard to the person or security risk to the business. A few states narrow or expand the types of businesses covered or specify regular business hours only. A few states do not explicitly require proof of a medical condition. In most states that address the issue of proof, a physician’s note is sufficient. Some states also accept notes from certain other types of licensed health providers. One state requires a specific form for this purpose. Many states permit an identification card from a national non-profit organization representing an eligible condition.
Please note– this type of card is not currently available from any U.S. organization concerned with IBS, although if there’s enough interest, it might be an advocacy issue to pursue. For U.S. readers who also have IBD, which is a separate condition from IBS, such cards are available to members of the Crohn’s and Colitis Foundation of America or from the Foundation for Clinical Research in Inflammatory Bowel Disease. Those with interstitial cystitis, a bladder condition that commonly overlaps with IBS, can obtain a card through the Interstitial Cystitis Association. The Association page linked here includes public restroom and travel advice for those with IC, but also appears helpful for conditions with similar restroom needs. The About.com IBD page linked in the second paragraph of this post also has useful tips.
The IBS Network, formerly The Gut Trust, in the U.K. also offers a card to its members, as does the Irritable Bowel Information and Support Association of Australia. There appear to be no specific legal protections associated with them; they’re simply a tool to communicate one’s needs to others quickly. According to The IBS Network’s website, the organization has an ongoing advocacy campaign to prevent the closure of public toilets in many cities. From anecdotal information, it appears that some U.K. residents with IBS benefit from “RADAR keys,” which unlock disability-accessible public toilets. The keys, as well as a guide to places where they can be used, are sold by the Royal Association for Disability Rights (RADAR),which recently merged with two other cross-disability advocacy organizations to form Disability Rights U.K.
Bills similar to “Ally’s Law” have been introduced over the years in more U.S. states, but as information isn’t centralized, the current status of each state is difficult to confirm. As of this date, legislation is known to be currently pending in New York. Readers who are aware of further details about states or countries not mentioned in this post are invited to comment on this blog.
IBS Impact applauds Ally’s initiative. Her success in making these laws a reality is especially impressive, as she was just fourteen years old when she began her quest. It’s hoped that other youth and adults will follow suit to change the system for digestive disorders like IBS. As Ally points out in Felicia’s interview, “It’s important to speak out… so that people know they’re not alone.” The IBS Network’s goals are also worthy, and readers in the U.K. should seek out more information on how to support them.
IBS IMPACT 
I am 39 years old, and have been living with ibs since the age of 25. I am a wife and mother of 3. My oldest is 18,11,9. It is hard living with ibs-d. Having diahrea while being home is manageable. It’s hell when I’m out in public and have to run and find a restroom. I avoid going to places where there is only one stall or where I’m not allowed to use the restroom. I live in Moreno Valley California. I don’t know the law on the prohibition to the restrooms at retail stores or pharmacies. I have been denied the use of the restroom at dds discount store, Fallas /Factory 2you,Rite aid pharmacy ,and at winershnitzel. I’m clueless about the law. I need help. Only people with ibs-d , know how bad it feels when you have to run out and look for a place where you won’t be turned away. I am interested in changing the law, so that people like me can go out and not worry about looking for a restroom. Where and how do I start.
Thank you for commenting, Maria, and sorry you are struggling. As these are state laws, unfortunately efforts are decentralized at this time, and it’s difficult to get up to date information on various states. In addition to the 12 states mentioned in the post here, Massachusetts just signed a law earlier this month, but California does not have such a law yet, and historically, the IBS community has not been very involved in these issues although IBS Impact would like to change that. I am aware that Ally Bain, the young woman with IBD who was the first advocate for these laws has a Twitter feed at @allys_law I would contact her and also your local Crohn’s and Colitis Association chapter to see if they can tell you location-specific information. Even though Crohn’s and colitis are different disorders from IBS, that community has generally been more active in this particular area of advocacy. Your interest is also worth mentioning to the International Foundation for Functional Gastrointestinal Disorders or its grassroots arm, the Digestive Health Alliance, if you are not already connected with them. They support and advocate for people with IBS and know of IBS Impact and many of our members. They may have some resources to help you get started locally and IBS Impact would be pleased to publicize and encourage others to join such an effort. IFFGD/DHA can be reached at http://www.iffgd.org or, toll free in the U.S, 888-964-2001. Please feel free to revisit this blog or email directly (contact links on our main site http://www.ibsimpact.com) with further comments, questions or updates.
what is Florida law?
Thank you for asking, Mark. Unfortunately, at this time, if Florida has a restroom access law or current advocacy efforts for one, IBS Impact is not aware of it. As these are state laws, not federal, they are all slightly different and publicly available information and media coverage about them have been decentralized and difficult to find. IBS Impact is in frequent contact with various organizations and individuals in the GI disorders community, and we try our best to report any new information here or on our social media as soon as possible. If you are interested in spearheading your own advocacy efforts in Florida, perhaps you might alert IFFGD/the Digestive Health Alliance if you have IBS or another functional GI disorder, or your local chapter of the Crohn’s and Colitis Foundation if you have IBD. The IBD community in various states has historically been much more proactive about this issue than the IBS community, although IBS Impact would like to change that and would be pleased to support and publicize such an effort.