Last week, I introduced you to my friend Ally Bain, who became an advocate for people with Crohn’s and colitis at the age of 14. When faced with a most embarrassing situation, she made the best of it and changed laws for people who live with IBD… while she was still in high school!  What began as the Illinois Restroom Access Act has now passed in eleven states thanks to lots of hard work and dedication on the part of many people. But it all began with one girl.  Thanks to Ally for sharing the story of how this law came to be.

Over the last ten years, my Crohn’s disease has presented many hardships, but I never could have imagined at the time of my diagnosis that one of those negative experiences would give me the opportunity to use my voice and help write legislation to further secure the rights of people with chronic illnesses.

When I was 14 years old, my mom and I were shopping at a large retail store outside Chicago when my Crohn’s disease began to flare. I knew I only had a matter of minutes to find a restroom. After a fitting room employee told my mom and me that the store did not have public restrooms, we asked to speak with the manager.

Although the manager said he knew about Crohn’s, he continuously denied me access to the employee-only restroom. He said we could cross the four-lane highway to another shopping plaza or walk a couple blocks to a restaurant. He clearly did not understand the time constraint. Despite me crying and bending over due to the severe abdominal pain, he stated he was making a “managerial decision.” Turning back towards his office, he waved as he wished for us to “Have a nice day.”

Only minutes after he said that, my day got much worse as my body gave up and my digestive system erupted. I felt humiliated and helpless. Walking out of the store, my mom promised this would never happen to me or anyone else again. Soon after, I knew just who to call: Illinois State Representative Kathy Ryg who I had met just two months earlier while on an eighth grade class field trip to the state capital.

State Representative Kathy Ryg and Ally Bain

Within a matter of months, I was helping her write legislation that stated that anyone with a medical emergency must be allowed access to an employee-only restroom. In 2005, my mom and I traveled to the state capital to testify in front of a committee. The bill passed unanimously through the committee and also through the Illinois House and Senate. In August 2005, former Illinois Governor Rod Blagojevich signed it into law as the Restroom Access Act, also known as Ally’s Law.

Since the passage of the Restroom Access Act, or Ally’s Law, in Illinois in 2005, the legislation has passed in 11 other states (thanks to the efforts of people around the country!): Minnesota, Texas, Kentucky, Tennessee, Colorado, Ohio, Michigan, Washington, Oregon, Wisconsin, and Connecticut. It is also pending in several more. To see whether your state is seeking its passage, visit your state’s legislature or general assembly website and search by keyword such as “restroom.”

Ally hopes to see the Restroom Access Act passed nationally.

I am also working on getting it introduced and passed on a federal level so that none of the estimated 1.4 million Americans with Crohn’s disease or ulcerative colitis will have to be denied the right of restroom access.

If you want to get in touch with Ally about working to get the Restroom Access Act passed in your state, feel free to contact me at forwardisapace@gmail.com. I’d love to connect you!

Have you ever turned an embarrassing moment into something positive? Tell me about it!

**Edited 6/23/13 to add: Please keep it respectful in the comments — I can truly empathize and understand the passion some of you feel about this cause. However, calling someone names will never convince them that it’s a cause worth fighting for.

 

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59 Responses to Ally’s Law: Turning an Embarrassing Situation Upside Down

  1. [...] out Ally’s Glamour article as well as her posts here about living with Crohn’s and the Restroom Access Act, or Ally’s Law. This is Ally. And me. And Charlotte. We're all rad, but Ally is the raddest. (My spell check [...]

    • Diane says:

      I was denied access to a restroom at my cardiologists restroom and told to walk down the hall. I explained not only did I have cardiac issues but was physically disabled and have Crohns. I said I might have an accident an I did. Also told them I was no longer a patient. How can this happen at a doctors office?

  2. Angela says:

    Hi Ally, I read your story in October, 2011 Glamour Mag. with intense interest. I live in the state of California and my husband is battling cancer which requires radiation treatments 5 times a week. The radiation causes incontinence. He has to travel from Newark to Oakland (about 40 miles) round-trip five days a week. He too has been denied access to restrooms in emergency situations and … Although I do not know you…I am very proud that someone in your situation has taken such a bold stance benefitting people like my family. You got my attention and my support! A shout out to you!

  3. [...] to ask for access and they are hidden in the employee only area. I’m also well-versed in the legislation that exists in Illinois (and eleven other states!) to protect people like me when we’re out and about. I always know [...]

    • Bonnie Nall says:

      I have had ulcerative colitis since I was 18 yrs. old and I am 60 now. Problems like this happened to me alot!! Thank you for this! I need to tell all that will listen, I have been taking Natren Brand Bifido Factor Probiotics for 3 to 4 years now. I have no symptoms at all of colitus. Please try them. I have to have a colonscopy every other year…My doctor will believe me someday!! HaHa

  4. Susan says:

    I have Interstitial Cystitis/Painful Bladder Syndrome and also urinary retention so “peeing in a pad” is not an option for me. I have been denied restroom access several times in spite of the fact that I am disabled. I would love to see this law passed in Indiana to help those with ALL medical needs.

  5. chris says:

    no offense ally, as the owner of a retail store, if you buy something in my shop, i will let you use the bathroom. but if you just want to come in and drop a deuce, forget you. you are cognizent of your medical condition, they do have adult diapers. you and your family seem over litigious, so letting me use your restroom and you fall down and poop your pants, i am liable. then the expense of hiring someone to clean your mess, the water bill, toilet paper, you want it all for free. you are not entitled young lady. the law is bogus. have a nice day.

    • Lauren says:

      I’m sorry that you feel that way. Please know that Ally and her family did not sue the retail store at which this happened. You’ll note that she doesn’t even mention the store in the article. There are provisions in the law to protect retailers as well.

    • Maria says:

      Forget the adult diapers…just don’t shop in stores like Chris owns. I was in a store like that once with a cart full of items ready to purchase and they denied me use of their bathroom. They thought I would have time to go across the highway to a service station to wait for a key then go use their restroom then go back to make my purchase of over $100. Are you kidding me? If they won’t let me use their bathroom, I certainly won’t shop there. I have not been back to that store. People like Chris don’t get how serious this illness is and wouldn’t last a day living through what we endure on a daily basis. In addition, if you truly can’t afford an extra flush once in awhile and a couple pieces of toilet paper, times are really tough.

    • Susan says:

      Chris, you are a heartless person who has no compassion for the sick. It all amounts to money for you. Karma is a bitch, and someday you will get yours.

    • I just heard about Ally’s law & I know this a very brave thing for this young lady to do what she has done. You people who do not understand about Crohn’s disease or Ulcerated Colitis have a rude awakening on how we live like this. Oh yes, they do have adult diapers but they are no way as protecting as you think they are. I have ulcerated Colitis & when I have to go there are no warnings. It just lets go & makes a mess in your pants & on your body. I think you are very rude & someday maybe you will understand how we have to live. Ally thank you for all you have done for us that have these issues. You are a very strong young lady & it makes me proud to know someone who is so brave in fighting Crohn’s

    • Jon Quirt says:

      Chris,
      What is wrong with you?
      I wish upon you a sever case of dysentery while trapped in a mall with like minded shop keepers. I think a person like you can only learn compassion, one issues at a time, through experience.

    • Toni says:

      Sounds like you need a lesson in kindness. Just remember, what goes around, comes around. It won’t be until you are desperate for help that you will understand the significance of what this brave girl had to put up with. What a scrooge!

    • Chyan says:

      Heres my comment.. Suppose you are having a heart attack and come in to my store to use the phone..I am not going to let you use the phone.. Its only for business calls.. Or people who buy something

    • JESSI says:

      CHRIS, you are douche bag! If you even knew what it was like to have this disease!
      As said previously “Karma is a bitch” you’ll get yours

    • Anna says:

      No offense Chris, but if you want to come to the comment section to be a hater, forget you. You, I assume, are cognizant of your hateful comment. Ally may not know that you posted a hateful comment, but a lot of other people know.

    • Ana says:

      Chris,I do not have IBS nor know anybody with it. But I understand how insensitive your comment is. Just picture it this way, what if a child, or teenager, or anyone under the age of eighteen; came into your store and said they needed to call their parents to come pick them up because they’re lost. Would you tell them they need to buy something? Or that they should have their own phone? The point is, a person in need is a person in need, if they defecated in your bathroom, or while talking to you, you’d have to clean it up all the same. If you really do own a retail store, im sure you would know that kids, and uneducated people shit on the floor and all over the place all the time; so whats the difference if someone pays five dollars to be an ass, and if they do it on accident?

    • Amanda Titi says:

      Obviously you have no Idea what it is like to live with crohn’s or colitis. When you have to use the restroom you have a few moments.. minutes if you are lucky to find a restroom. No one should have to wear diapers on a day to day basis because ignorant people like yourself refuse restroom use to someone with a disease. We did not ask for the disease nor did we do anything to bring it on ourselves, but we are asking for a little cooperation from healthy-bowed individuals.

    • David says:

      If you own a retail store open to the public, then you are subject to certain non-discrimination and accessibility laws. For instance, you cannot exclude people of a certain race, and you need to have wheelchair access. There are also zoning and building laws regarding safety. Restroom access is a perfectly reasonable addition to these requirements. Frankly, I think the law should apply to ALL consumers, emergency or not.

  6. Paula says:

    What a fabulous thing you have done! May it become a federal law one. Keep up the fight, you are helping save so many from prolonged pain and embarrassment!

  7. Yes You Can! says:

    [...] a negative into a positive, Ally successfully lobbied the Illinois state government for a law so that this would never happen to anyone again. Today, [...]

  8. Jenn says:

    Chris, you absolutely disgust me. I’m A mother ( to a healthly little girl), but could only imagine what your poor mom went thriugh too . Ally. You have my support.

  9. Ellen Martin says:

    Dear Ally,
    I am enrolled in Cleveland Clinic’s Wound Ostomy Continence Nursing course, I came across your heroic actions in my research on Crohn’s disease. You are a true hero and a mentor for all! I am so proud of you and I’m sure your parents are too. I hope you continue to feel well and keep at it, I’m sure all 50 states will pass Ally’s Law!! Ellen Martin

  10. Alicia says:

    I am happy this law exists;however, I don’t think it will ever be enforced. Businesses in Chicago deny me access to their private restrooms all of the time and I have Crohn’s. I get why business owners don’t let just anyone use their employee/private restrooms, but that Chris guy takes it to a whole new level. You are an idiot. Why don’t you put on an adult diaper, poop in it, and then continue about your day. I hope you go out of business and have to clean public restrooms for the rest of your life. Go Ally!

  11. [...] all know the story of my friend Ally, who was denied access to a bathroom at a retail store, despite the owner’s awareness of [...]

  12. Loretta says:

    @Chris… What a total idiot! As a gastrointestinal nurse I am appalled at your attitude! You have no idea what people with IBD go through. This is about being a human being! God forbid you are stricken with such a disease and have to deal with attitudes such as yours! What an absolute MORON!!

  13. Robin Pietrobonno says:

    I am sending this to anyone who will listen:

    To Whom it May Concern,

    I usually do not write letters or make complaints but after what I experienced today, I don’t want this to happen to someone else. My name is Sarah Robin Pietrobono, I am 33 and I have had Crohns’ disease for 10 years. For those unfamiliar with Crohn’s, it is an autoimmune disorder in which your body attacks the lining of the intestines. The myriad of symptoms include severe abdominal pain, nausea and vomiting, diarrhea, and in severe cases life threatening bowel obstruction. This week I went to the doctor to attempt to fix a bowel obstruction caused by a stricture. A stricture is scar tissue that develops in your intestines and forms in a round band blocking passage of stool. My procedure Wednesday was not so successful and I may need surgery to correct. For people who have Crohn’s, we basically have a ticking time-bomb in our intestines never knowing when you will be hit with intense pain and the urge to defecate. For some, that urge is emergent and often accompanied by nausea and vomiting. As a Crohn’s patient, I constantly worry about being trapped below ground on a subway without access to a restroom. I am keenly aware of where almost every public restroom is between my house and work. Even at work, I frequently must run out of meetings with little notice that I must immediately use the restroom. This disease is psychologically and physically taxing. I am reluctant to leave the house at times when I am having a flare up and sometime just break down crying out of frustration and pain.
    Today I was with my fiancé Jason on our way to look at paper for our wedding invitations. I was on the F train headed to 14th street when I needed to urgently get off at the west 4th street stop. As I was walking down the platform I was dry heaving and thinking to myself “would anyone understand if I had an accident right now?” and “what is my fiancé going to think?” Thankfully, I was able to navigate to the exit and began looking for a business. The first place I saw was the IFC theater. I quickly ran across the street and entered the front door. I explained to the young lady taking tickets that I have a chronic disease called Crohn’s, I am having a medical emergency and need to use the restroom. The woman said “sorry you can’t enter you need a ticket.” To which I replied “I am really sick and this is an emergency.” I began to walk past her and she attempted to physically block me with her body multiple times as if she was a linebacker. During this time, my fiancé was saying “I’ll buy a ticket just let her go!” Other patrons in the theater, shocked with disbelief of this woman’s lack of human decency, informed me of where the restrooms were located. Once in the restrooms, the employee entered the restroom, didn’t acknowledge me or say anything. She walked back and forth past the stalls and exited.
    I immediately left the theater after using the restroom. Once I returned home, I called the theater to complain to a manager, who coincidentally was the woman I was calling to complain about.
    I explained Crohn’s disease to her and how her treatment of me was humiliating and inhumane, breaking down to tears. She simply replied “I was just doing a good job.” She also stated she “couldn’t be sure what was going on at the time”; contradicting her first statement. I reminded her that I explained that I was having a medical emergency and asked her why she was also completely unable to see the tears and pain on my face. Her third statement to me was “Well, all I can do is apologize” without actually issuing an apology. She demonstrated a complete lack of empathy for another human being and I believe violated the Restroom Access Act and the American’s with Disabilities Act.
    I am contacting you to share my story. When I came home, I read an article online about Ally’s Law http://www.forwardisapace.com/2011/09/turning-an-embarrassing-situation-upside-down/
    Which made me break down in tears to hear about a young girl who was denied access to the restroom and ultimately experienced what I fear happening to me.

    Please forward this to anyone who may be able to bring attention to this issue.
    -Sarah Robin Pietrobono

    • Stephanie Benhase says:

      Oh, Sarah, I don’t even know what to say. Our disease makes us self conscience in so many ways, we don’t need anyone else to make it more difficult for us. Best of luck to you and stay healthy! (which I always call an oxymoron for people with Crohn’s.)

  14. Lauren says:

    Sarah, I’m so sorry to hear about your experience. I’m glad you called and applaud you for raising awareness and taking a stand.

    The Restroom Access Act has not been passed in all states yet, so whether it was a violation depends on where it happened.

    Best of luck to you!

    • Fred says:

      I am 49 yrs old and i have had crohn’s disease for 30 yrs. I am well controlled on remicade and methotrexate. I have had a hard life being denied access to bathrooms. I have been forced to use the woods, plastic bags and have even had many accidents.At one point I could not even drive to work with out stopping 4 or 5 times during the 30 min drive. I am thankful for all the people who did help and would like to thank them. I would like to thank the NJ state police who always let me use their inspection station. I would like to see Ally’s law passed in NJ.

      • fred says:

        I just want to add that the 1st time i drove into the NJ state police inspection staiton it was filled with DEA agents inspecting a truck. The officers looked at me as if to say what are you doing here. Don’t you know this is not open to the public. I began to tell them that I have Crohn’s dx and i am having an emergency and needed to use the bathroom. I always carry a note from my doctor that explains my need to use a restroom . The officers looked at me and said too much information go ahead and use the restroom. Over the next 4 yrs that inspection station became my safehaven and the officers could not have been kinder. This all happened because earlier I had been denied use of a bathroom by a barbershop and when i offered to pay for a haircut I was still denied.

  15. [...] law originated through action by a Crohn’s patient named Ally who was shopping with her mom, was denied access to the employee restroom, and ended up having a [...]

  16. Michelle says:

    You go, Ally! I have multiple sclerosis and it gives me incontinence (urinary and fecal). Thank you so much for this legislation!

  17. christina says:

    Thank you ally….you are a hero ….and I know what that a hero is as I am a firefighter and have a daughter with UC. Thank you for being so strong. I have so much admiration for you to stand up for what you believe in..Thank you from the bottom of my heart

  18. Stephanie Benhase says:

    Wow Ally! You are one impressive young lady.

  19. Jon C says:

    Hey all, I just created a petition to try and get this law passed nationwide. It needs at least 25,000 signatures to be considered. 150 to even show up on the site. Please sign and spread the link around so we can hopefully get this passed.

    http://wh.gov/n8bA

  20. Sariah says:

    My name is Sariah and I have Interstitial Cystitis with urinary retention. For those of you who don’t know what it is, it is just like chrons but in the bladder. My body attacks the lining of my bladder wall and it feels like I am in a constant state of a bladder infection. I often don’t leave my house due to flares. I have to use a catheter in order to pee. When I am not using a catheter, I am in the bathroom 45-60 times per day. I was denied bathroom access to a merchant today. She replied, “that she doesn’t let people with bathroom disabilities use their bathroom because it’s not handicapped ready”. Mind you, I am not in a wheelchair. I just needed to pee, and BAD. I am in Indiana and they do not have this law enforced here.

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  22. Dana says:

    First of all Chris – what a non-compassionate person you are. The word DICKHEAD comes to mind. I would never wish what I go through with Crohn’s disease on my worst enemy, but you have changed my mind on that – Chris you obviously are completely ignorant. You should have an inflammatory bowel disease and be denied a bathroom, when you are in a cold sweat, having pain, and about to explode. It’s not that simple. Yes we are cognitive of our “problem” but we have no window of time to “hold it” like you.
    Trust me after 30 years of Crohn’s disease, it’s awful to be in this situation. It’s not about adult diapers you selfish moron.
    It’s about having compassion for another human being – may you rot in your own poop.

    Ally you rock girl! I’ve been denied bathrooms too in dire moments. It’s awful enough to live with our disease. its degrading, embarrassing, uncomfortable, painful, and I could go on.
    There is no cure and we persevere, because that’s the cards we were dealt! Thank you Ally for standing up on all our behaves! I just got my card. Don’t ever let turkeys like Chris ever stand in your way! Btw: I grew up with your second cousin Sherri Bain! Small world. Just remember we crohnies are all connected! Stand proud and be well little sister!!!

  23. geoff says:

    perhaps ally’s law should be updated or amended to include those who for whatever reason no longer have a colon but instead deal with a “j-pouch”. It is internal and formed out of the lower end of the small intestine. bowel movements for me are sudden and intense. there is no few minutes warning. accidents happen alot. my bathroom “pit stops” average 12-18 times a day. like i said , maybe an amendment to ally’s law is in order to include not just IBD or IBS but also those who suffer with ileoanal issues as well.

    • Lauren says:

      Ally’s Law (the Restroom Access Act) extends far beyond IBD (and this site makes no mention of IBS, which is very different). It is for anyone with a medical necessity. Sounds like you have one!

  24. Mark says:

    Can someone tell me if the 8/27/98 Miami Herald is accurate stating restroom access is granted in a Department of Health regulation contained in the Standard Plumbing Code. Also, how can it be enforced?
    As far as I know there is no Ally’s Law in Florida.
    Thank you

    • jennifer says:

      This is the 1st part of the code for building accessible bathrooms-but it only refers to building construction, not people.

      404.3 (Florida Building Code, Building, 11-4.16) Water clos-
      ets.

      404.3.1 (Florida Building Code, Building, 11-4.16.1)
      General. Accessible water closets shall comply with Sec-
      tion 404.3.

      404.3.2 (Florida Building Code, Building, 11-4.16.2)
      Clear floor space. Clear floor space for water closets not in
      stalls shall comply with Figure 404.3.2. Clear floor space
      may be arranged to allow either a left-handed or
      right-handed approach.

      404.3.3 (Florida Building Code, Building, 11-4.16.3)
      Height. The height of water closets shall be 17 inches to 19
      inches (430 mm to 485 mm) measured to the top of the toilet
      seat [see Figure 404.3.3(b)]. Seats shall not be sprung to
      return to a lifted position.

      404.3.4 (Florida Building Code, Building, 11-4.16.4)
      Grab bars. Grab bars for water closets not located in stalls
      shall comply with Section 404.12 and Figure 404.3.3. The
      grab bar behind the water closet shall be 36 inches (915 mm)
      minimum.

  25. Bill says:

    I will ask you only once,”where is your Restroom ”
    Or I will shit right here on your floor and not clean it up…your call
    You want to play hard ball. You have no idea of who your dealing with.
    Been there done that !

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  27. Tom Fairhall says:

    Hey Ally,

    Fortunately i have never been turned down the use of the restroom in the UK my worst flare up with Colitis was May to Dec 2012 and whilst working it was a case of knowing where every McDonalds was as that was my constant toilet.

    And since Dec 12 I have been smoking cannabis everyday to keep it at bay that was till 6 days ago when I stopped smoking due to the high cost spent over £10000 in the last year and a terrible cough and chest infection and I can feel myself getting worse and the Colitis flaring up as Im writing.

    To be clear for 13 months and have no problems has been a joy but feeling how i am now is making me appreciate that more and I dont think we have anything like this law in the UK.

    My father also had this nasty disease and affected him for over 30 years and was originally bought on my his giving up smoking he had quite a bit of his bowel removed 3 years ago and had the colostomy bag for 6 months and that was the worst Ive ever seen him he lost 3 stone but thankfully now he is 100% better luckily I havent had it no where near as bad as he has had it.

    I commend and thankyou Ally from all the way over the pond.

    Tom
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  30. Kate says:

    I’m so grateful for your dedication and perseverance! Because of your work, I no longer have to be afraid or anxious when going shopping or just going places with friends. A lot of people just view diseases like Crohns as a “first world disease” and view those who need regular and immediate access to bathrooms as “entitled”. It’s not like we neglected to use the bathroom before leaving home or school, and it’s also not a matter of being able to hold it. This is not only a terrific law for IBS sufferers and those with related diseases, it also brings about awareness of these issues.

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  33. Deb says:

    I recently saw a woman who was in obvious distress refused a restroom at a Family Dollar store in Massachusetts (where the Ally Law has been passed) When I tried to be informative and tell the employee about the law she told me..”she did not care.” who do we report this to. I actually want to take it to the media..but I want the store to be sited for a violation. Help?

  34. mary says:

    I have been living with uc for over 10 yrs now. I am working at a high school where all the bathroms and lounges are locked. Every school yr it seems that i have to beg the secretary who is our union president to please give me a key so i can have accces to a restroom but she says she is too busy and cant get to it. I am going on my 3rd day now without access to a bathroom at wrk. Wht can i do ? Any help…

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