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December 2007 Back Issue Table of Contents |
Opening Doors
The story of Ally's Law - Legislating access to restrooms
By Joanne Olshan
Ally Bain could not have predicted the enormous effect she would have on peoples' lives, particularly those living with inflammatory bowel disease, an ostomy or related conditions. Something profound happened to this young girl from the suburbs of Chicago when she was only 14. It was a humiliating incident, not something you’d readily share with others and certainly not with strangers. But that’s exactly what Ally Bain did. In 2001, Ally was plagued with stomach aches and fevers that proved to be much more serious than a lingering case of the flu or lactose intolerance. She was diagnosed with Crohn’s disease (CD) at only eleven years old. While there is no cure for this autoimmune disorder involving the gastrointestinal tract, some cases can be managed with medication. It may even go into remission with no symptoms at all, but it is a chronic condition that can flare up at any time. Some cases can be severe enough to require an ostomy. Living with CD can be a lot to deal with for an adult, let alone a child. Ally was determined to live life as normally as possible, so she persevered at school, took a regimen of medication and developed a high tolerance for pain. She entered high school in 2004 as the fevers and stomach aches persisted and trips to the restroom became increasingly more frequent, sometimes up to 40 times per day. When curious classmates asked why she made so many trips to the restroom, she simply told them. |
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Ally explains, “I wanted to be straightforward with people. I didn’t want the disease to mask the rest of my life and by telling people what was going on, I built a stronger support system.” Her greatest supporters are her parents who, despite Ally’s praise, say there were times when they felt helpless. Her mother kept Ally on a regular routine hoping it would help her daughter cope and remembers that, “Finding the right mixture or the right medication was difficult. She had been on medication for a while without much success.”
On one seemingly ordinary day, Ally and her mom went shopping at a popular retail store. Suddenly, Ally began to feel pain and needed to use the restroom. Lisa asked one of the store employees if her daughter could use the washroom, but was told no. As Ally’s discomfort intensified, her mother asked to speak with the manager who also denied a growingly uncomfortable Ally access to their bathroom.
Lisa tried desperately to make the manager understand Ally’s medical condition and the urgency of having to use the restroom. Her daughter stood by her side with both arms wrapped around her stomach in excruciating pain. The manager was adamant in his refusal, claiming that company policy did not allow him to do otherwise. He suggested that they go across the street where there was a public washroom. That was not a realistic option and consequently, Ally had an accident in the store.
As mother and daughter headed for home, Lisa’s anger was palpable. She vowed never to let Ally be humiliated like that ever again. “At that moment I didn’t really know what I was going to do about it. I was very, very upset,” recalls Lisa.
She called the corporate headquarters of the store and e-mailed the CEO who implemented a new store policy regarding the use of the employee restroom effective the day after he was contacted by Lisa. But it didn’t stop there. Ally's father contacted the media. The first reporter to cover the story was Nesita Kwan from the NBC affiliate in Chicago and not long after, every media outlet in Illinois told the story of the 14-year-old girl with CD who was denied access to the restroom.
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And that might have been the end of it had Ally not remembered the field trip that her eighth-grade class took to Springfield, IL, for a tour of the state capitol. Ally met Illinois State Representative Kathleen Ryg of the 59th district who told the eighth-graders to be sure to contact her if they ever needed anything. Ally decided to take Representative Ryg up on her offer. After Ryg was contacted by Ally and her mom, she did some research and discovered that there were no restroom access laws in Illinois. So, she and Ally wrote the language for a proposed bill, appropriately named Ally’s Law. Eventually, it was introduced to a judiciary committee, the majority of whom had a legal background. Ryg based the wording on similar initiatives in other states and had the Crohn’s and Colitis Foundation of America review the proposal. But, Ryg said, “I learned that even good ideas can be a problem.” Putting new requirements on retailers meant securing their support, so she reached out to the Retail Merchants Association and the Convenience Store Operators. In some cases, it was argued, the proposed legislation was not feasible for safety reasons and the lack of employees in some convenience store operations. Adjustments would need to be made. |
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Ally at a press conference for the University of Chicago Medical Center . She read her poem about her stay in the hospital for Crohn's - she was 16. |
And while the groundwork for the proposed legislation was progressing, Ally’s physical condition seemed to be deteriorating. Absent days at school started to accumulate, but she tried hard to keep up with all the work. At one point, the severity of her pain was so bad that during an examination when a doctor gently touched Ally’s stomach, she nearly leaped off the table. Her CD caused a perforation of the colon and she needed emergency surgery.
At Advocate Lutheran General Hospital in Park Ridge, IL, part of Ally’s diseased intestine was removed and a temporary colostomy was created. This involved bringing one end of the large intestine through the skin for a stoma and temporarily stapling closed the other end. The emergency surgery was a success, but learning how to change her ostomy bag was challenging.
In January of 2005, Ally traveled to Springfield to testify in front of the judiciary committee. When she was called upon to speak, she read a couple of paragraphs that she had written in her hotel room the night before. Ally was very poised as she articulated what had happened to her and why a law was needed.
According to Ally, “When I was done the committee members’ faces expressed anger and empathy.” Representative Ryg also addressed the committee, as well as the convenience store operators and the merchants that were in attendance. Representative John Fritchey encouraged everyone to get this passed because he has a "dear friend" with Crohn's disease.. There was such over-whelming support, that the bill passed on “unanimous leave” meaning that there was no need to vote.
Representative Ryg then presented the bill to the Illinois House of Representatives, where it also passed unanimously and then to the Illinois Senate where it was again very well received in another undivided vote. Representative Bill Black applauded the effort and encouraged everyone to vote for it. And all along the way, the list of Ally’s Law supporters grew, including the petroleum industry and UCB Pharmaceutical Company as well as support from individuals who wrote letters when they heard about Ally’s story through the extensive media coverage.
In August of 2005, eight months after legislation was first introduced by Ally and Representative Ryg, the Restroom Access Act, commonly known as Ally’s Law, was signed into law by Illinois Governor Rod Blagojevich. The law requires businesses to make employee–only restrooms available to people with CD, inflammatory bowel disease and other eligible medical conditions including those who utilize an ostomy device, are pregnant or have incontinence.
Restrooms have to be located in areas that will not present a risk to the customer or a security risk to the retail establishment which must have three or more employees and does not include gas stations. Proof of a medical condition is not required to access an employee–only restroom as merchants are expected to be aware of the law; however, CCFA offers a card which one can present if necessary.
During the same yearDr. Ficherai at the university of chicago medical center children’s hospital performed her second surgery to take down the ostomy and reconnected her intestine. This time however, Ally’s recovery didn’t go as smoothly as the first surgery. One week after being released from the hospital, she was re-admitted because of an infection. With fevers that spiked to 104 degrees and two different strains of bacteria in her blood, Lisa was told that her daughter would either get better or end up in intensive care. Slowly but surely, Ally began to show signs of improvement until she was well enough to go home following a month-long stay in the hospital.
Dr.Rubin took Ally off all previously prescribed medications and started a new treatment regimen. By now a 15-year-old high school sophomore, Ally seemed to thrive. She developed a very close relationship with Dr. Rubin, who she sees every three months for check-ups and to chat about things that are medically unrelated.
Ally had one more surgery in 2006 to remove some scar tissue that was practically closing her intestine. Her CD has been in remission for two years now and she looks to the future without trepidation. Both Lisa and Ally emphasize the importance of having a great doctor/patient relationship.
| “Doctors need to be pro-active. They need to be three steps ahead and you need to believe in them. The doctors who tell you to feel free to get a second opinion are the ones you want to see,” asserts Lisa. Ally continues to inspire others to initiate Ally’s Law in the state where they live. The law has passed in IL, TX, MN, KY and CO. It is pending in ten more states. If you’re interested in starting a restroom access initiative, you can visit www.crohnsandme.com and click on the “Advocacy Center” link. “As more and more states pass the law, it shows there is a need and puts it on the radar for federal legislators,” said Ryg. In an effort to speed up that process, she and Ally are planning a letter writing campaign to all state senators which will include information about Ally’s Law, her personal story and a call to action. |
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Ally Bain with her mother Lisa. |
Ally is now a freshman in college. She also has an occasional speaking engagement where she talks about living with CD and the undignified circumstance that ultimately resulted in Ally’s Law. “Try not to keep your condition secretive,” advises Ally. “It helps to be vocal about it. Know that you’re not alone. Have a good relationship with your doctor and surround yourself with people who support you. There are answers out there.” And perhaps no one knows that better than Ally Bain.