Sixteen-year-old Morgan Burnett was browsing the clothing racks with her mother at Plato’s Closet in Dover last year when she was hit with a sudden, urgent need to use the restroom.
Morgan is living with Crohn’s disease, a chronic gastrointestinal condition that can cause persistent diarrhea, bleeding and constipation. So when she’s overcome by the need to go, it can be intense.
She asked to use the bathroom at Plato’s Closet, but was told the restroom was open only to employees. Morgan and her mom were forced to rush out of the shopping strip near the Dover Mall in search of a bathroom.
Burnett, of Smyrna, later turned that embarrassment into empowerment by lobbying the state Legislature. Now, under a new law in Delaware, retail businesses must open employee bathrooms to customers with written medical proof that they have Crohn’s, colitis or other conditions that require immediate access to a bathroom. Refusing to provide bathroom access could result in a $100 fine.
“This is not meant to be a hammer on businesses,” said Rep. Trey Paradee, a Dover Democrat and the state lawmaker who sponsored the legislation. “What we really wanted to do is just increase awareness. The reality is, 99 times out of 100, if someone walks into a business and is obviously in distress most business owners or employees of a business will say absolutely, go ahead.”
The law, in effect since August, impacts all Delaware businesses that offer goods for sale and have at least three employees. Fourteen other states, including Maryland, have similar legislation, yet some Delaware business owners are concerned that the new law is an infringement on their rights.
“It’s not practical. It raises a lot of other concerns what can go on in a city where there are very few bathrooms,” said Jack Buckley, co-owner of the Ninth Street Book Shop in downtown Wilmington. “Oh boy did they open up a can of worms down in Dover.”
While the new law includes undue hardship clauses to protect businesses that have difficulty with compliance, it still means most Delaware businesses will have people going into their private spaces.
Inflammatory bowel diseases, such as colitis and Crohn’s, affect the gastrointestinal tract, but in different ways. Colitis normally affects just the large intestine, or colon, which removes water, salt and stores feces. Crohn’s disease is a bit more widespread along the gastrointestinal tract, irritating the small bowel and colon, as well as mouth and esophagus. Symptoms vary from rectal bleeding to fever to loss of appetite to even psoriasis, a chronic dry skin condition.
Both diseases are characterized by a persistent urge to go to the bathroom, says Dr. Gary Lichtenstein, director of the University of Pennsylvania’s Inflammatory Bowel Disease Center.
Of the nearly 1.6 million people nationwide living with Crohn’s Disease or ulcerative colitis, 12,000 are Delawareans. The diseases are not contagious, and men and women are equally as likely to be affected.
Usually people begin to show symptoms between 20 and 29, Lichtenstein said, but they can occur at a very young age. The younger the diagnosis however, the more severe the condition – and a longer timeline of suffering.
“They have many more years of disease and the inflammation,” he said.
Morgan was diagnosed at 13 after her mom noticed she kept having severe stomach pain and wasn’t eating. In a span of two weeks, she dropped from 120 pounds to 82 pounds because her gastrointestinal tract was so inflamed. During her freshman year of high school she was hospitalized nine times.
She’s been hospitalized twice this school year, once days before Thanksgiving. Crohn’s weakens Morgan’s immune system so she picked up a nasty virus.
Another time she was hospitalized in an effort to ease the pain of psoriasis, a common byproduct of Crohn’s. Her psoriasis tracks up through her nasal passageway, which in turn, affects her tear ducts. She often wakes with her eyes painfully crusted over in mucus. She now sleeps with stent tubes to help stop blockages.
“It was kind of a struggle to get back on track,” Morgan said.
The causes of such inflammatory bowel diseases are not completely understood, but Lichtenstein says the disease is related to genetics.
“There are 30 genes identified in Crohn’s, 23 with ulcerative colitis,” he said. Studies have revealed that 5 to 20 percent of people with Crohn’s or colitis have a parent, child or sibling with one of the diseases. Genetic mutations also can trigger the disease. Diet and stress can aggravate the symptoms, but they don’t cause the disease.
“Unfortunately one size doesn’t fit all. Individualization is important,” he said.
In addition to physical symptoms, there is a psychological cost. Lichtenstein said that many people with the disease are accustomed to social embarrassment and may have to miss work because they are unable to function. Often, symptoms will just sneak up on a person, and must be relieved immediately.
Kevin Baird, attorney and partner in Baird, Mandalas, Brockstedt law firm in Dover knows those symptoms all too well. He’s lived with Crohn’s for the past 20 years and was one of the driving forces of the restroom access legislation.
“You knew that you wouldn’t get access to a private facility. If I’m in the mall walking up and down the mall and I had an attack or flare up I would run past 15 stores to go to the first public restroom,” Baird said. “I think it (the new law) is going to open up people suffering from the disease. Before, there was no protection under the law, they were just turned away.”
The law was drafted broadly to include any type of irritable bowel disease, Baird said, but he doesn’t foresee the law being abused. People with celiac disease, irritable bowel syndrome or who use ostomy devices to collect waste, can also ask their doctors for a medical note.
“There is certainly the potential for it to be used perhaps improperly … It’s going to be in the doctor’s discretion. Typically a GI doctor will know what the condition is,” he said. “We wanted to make sure we are giving doctors and potential patients enough latitude.”
There are many intestinal conditions that haven’t been specifically named yet, Baird said, so the writers didn’t want patients kept out of the law’s reach because they don’t have a correct diagnosis.
“We think that the medical community will be responsible,” Baird said.
Even so, Paradee admitted the law could be tweaked a bit. When the Legislature reconvenes Tuesday he will discuss the possibility of introducing a companion bill to create an official identification card to provide someone with restroom access.
Paradee envisions there to be an online database where people can register, print out identification cards and take them to their doctor to be signed. That is what Maryland has in place.
“The card has been used on the honor system, we have not received any complaints from business owners,” said Dr. Clifford Mitchell, director of the Maryland’s environmental health bureau, which oversees the database. The department has not done any audits or enforcement to apprehend anyone falsifying cards.
Mitchell said access to identification cards has been more of an unanticipated public health benefit for individuals suffering from Crohn’s or other gastro-diseases.
“It’s really an obstacle,” he said. “They have been grateful for the opportunity to allow them to increase (access).”
Lichtenstein could not comment on the legislation directly, but agreed that having easier access to a bathroom is critical for such patients.
“As this goes, it is a disabling disease,” he said. “Having a bathroom close by is a wonderful thing … because the consequence of not using a bathroom is not good.”
The bill was supported by the state chamber of commerce and trial lawyers association, after undue hardships clauses were added.
While the state Division of Public Health acknowledges that businesses will have to clean up after people with severe conditions, it is not concerned that the occasional stool with blood will represent a biological hazard requiring store owners to bring in environmental experts. Owners and their employees can do the standard clean-up themselves, including wearing gloves and washing hands after removing gloves, the state says.
Even before the legislation was enacted, Dawne Nickerson-Banez, owner of Frankfurt Bakery in Dover, said her employees never turned customers away from using their bathroom. Going forward, that won’t change. Even if the bathroom might get a little messy.
“It’s going to be what it’s going to be,” she said. “We are never going to turn away anyone if they want to use the bathroom. It won’t impact us at all.”
Buckley, owner of the Ninth Street Book Shop, is sympathetic. At the end of the day, though, he feels “once you have an open bathroom you will have a parade in here all day.”
He and his wife Gemma have owned the shop for over 35 years. It’s always been a solid, albeit small fixture in the downtown area, with at most three employees clocked in at once.
“We do not have public access to our bathrooms. We are a small shop. It’s difficult because for security reasons you have to go back and accompany them,” he said. “It’s easier for us to say no.”
There are specific safeguards built into the legislation to mitigate hardships on businesses, argues Paradee.
Three or more employees must be working at the time a person wants to use the employee restroom and the business would not have to change the bathroom’s layout to accommodate a person. Additionally, employers would not have to open the restroom if it were located in an area that would pose a risk to the customer or if accessing the bathroom would expose sensitive company documents.
“There are plenty of outs or excuses businesses can use, but hopefully it does increase awareness,” Paradee said. The first time a business refuses someone with a doctor’s note they get a warning. Any other time, they will receive a $100 fine.
“It’s not meant to be some sort of government crackdown. If someone just runs in off the street, the business is allowed to request some sort of proof.”
Despite some business’ concerns, Paradee doesn’t see the potential for foul play when it comes to fake cards. The state is in agreement, stating that they do not see fraud as a large issue as it is unlikely someone would go through the steps outlined in the law to have fraudulent access to a restroom, though they’d like to see the final introduced bill before taking a stance.
“I really don’t think most people in today’s world have that kind of free time to where they are going to go to the trouble to create a falsified Crohn’s and colitis ID card. I haven’t heard any stories over the last six months of people trying to take advantage of this legislation claiming to have one of these conditions,” Paradee said.
Kathleen Macrae, executive director of the American Civil Liberties Union of Delaware, said they don’t have a position on the bill since it concerns private entities not the government. But she would be interested to see if any discrimination problems arise.
“At this point, the Legislature has spoken and the governor has signed the bill. We will have to see how it plays out,” she said.
At first glance, Morgan seems like the quintessential teenager. She fancies blue eyeliner and loves to shop. She just got her driver’s license and is excited to hit the road. She just happens to know where every bathroom is at her high school.
“It makes me a better person,” Morgan said of her disease. Now she’s learning to advocate for herself. Morgan and her mom went back to Plato’s Closet after the law was implemented and were happy to find that the store opens its restrooms to the public.
For many people living with the debilitating intestinal disease, it takes time to weather that storm. Take Miss Delaware 2006 Jamie Ginn. Ginn’s sister was diagnosed with Crohn’s when she was five and she has been through multiple emergency surgeries.
“It was just so extreme. I would see her in the bathroom for hours of a day,” Ginn recalled. When she competed for Ms. Delaware, Crohn’s was her platform.
“I talked about it from secondhand experience. Two years later, I myself was diagnosed.”
She was out of work for a long period of time and had to take 13 pills a day to manage the symptoms.
Lichtenstein said the treatment and severity of the condition depends on the person. Low-fiber diets help, since it can give a person less of a sense of urgency. In a state of remission, the symptoms resolve on their own, he said.
About 50 to 70 percent of people have periodic flare-ups. Some people may need surgery, but medication usually helps manage the disease. Surgery can lead to scar tissue, he said, which can obstruct the bowel even further when it heals. Drugs like Remicade and Humira are preferable and are normally covered by insurance, Lichtenstein said.
“Many times, individuals when treated and when the medications work they can resume a wonderful quality of life. They get their lives back and they don’t have to be held prisoner to their disease,” he said.
Even with medication, Ginn, a chemical engineer with DuPont, had no idea how much her life was about to change.
“I knew that you always needed a bathroom. But it’s different when you go through that. On my commute to work I had to memorize the location to every Dunkin Donuts. That is your life at that moment, when you urgently need to go to the bathroom every day. When you feel so lost, scared, sick, sweaty. There are so many things. The worry on top of that is a daily challenge,” Ginn said.
“I think the impact on your psyche and overall feeling of wellness is compromised when you don’t have access to a restroom.”
When you go to the bathroom, it looks like your insides are coming out, she said. And with her, the symptoms hit quickly.
“I went from healthy normal one day to seeing some blood to being absolutely not being able to physically stand up,” Ginn said.
She’s missed a friend’s wedding and said that the disease has really impacted her love life.
“You have to find someone who is willing to see you in those moments and put up with it,” she said.
She feels that Delaware’s restroom access bill has been a step in the right direction to help people with Crohn’s or colitis have a chance at a normal life without stigma. It has sensitively brought awareness to the community without being a burden, she said.
“They (businesses) are not going to see people coming to their doors every day,” Ginn said. “It’s going to be for the person on the other side when they feel hopeless and have nowhere to go.”
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