Public Restrooms & Travel Tips
Travel presents many challenges for people with interstitial cystitis (IC), especially those who are severely affected, however, with a little determination, you can take some steps to make travel with IC easier.
Interstitial cystitis (IC) patients need quick access to restrooms. Recognizing this need, the Interstitial Cystitis Association (ICA) created the Restroom Access Card. This plastic wallet card communicates your emergency need for a toilet. The card gives a brief description of IC and explains your need to use of toilet facilities in public places.
Now there is even more help for people with IC and others needing immediate restroom access. State laws mandate restroom access, websites provide online databases, and new products take the worry out of being stranded without a restroom.
State Laws Mandate Restroom Access
State Laws Mandate Restroom Access: After a store manager denied her access to the shop’s bathroom, Ally Bain, a Chicago teenager with Crohn’s disease, championed the Illinois Restroom Access Act. Also known as Ally’s Law, this Act requires businesses to allow people with medical emergencies access to private restrooms if there are three or more employees at the business. The law fines stores $100 if they do not cooperate.
In addition to Illinois, Kentucky, Minnesota, Texas, and Washington require businesses to provide restroom access to those with chronic conditions like IC. Most laws direct you to present a letter from your physician when asking to use a restroom. Similar legislation is pending in other states, including Connecticut, Delaware, Florida, Maryland, Massachusetts, Michigan, New York, Ohio, Oklahoma, Pennsylvania, and Tennessee.
Websites Offer Databases of Restrooms
Online services and apps can help you locate public restrooms in the US and abroad.
Portable Toilets Make Long and Remote Trips Easier
Portable toilet devices offer an alternative for long-distance traveling and remote location
Travel presents many challenges for people with IC, especially those who are severely affected. However, even these patients, with a little determination, can travel and make the adjustments necessary. Prepare for travel carefully. Try these suggestions to make things a little easier:
- For car travel, carry a portable potty or bedpan in the car. Some IC patients have even installed portable toilets in vans. Portable female urinals are also useful.
- For air travel, arrange ahead of time for an aisle seat near the toilets. Sit on pillows to minimize vibrations. Restrict fluids before and during flight.
- Women can wear absorbent pads and men can use a condom catheter while flying or traveling by other modes where access to a restroom is sometimes restricted.
- Try not to travel during peak seasons when things are more hectic and unpredictable.
- Find out in advance the location of restrooms along your route. Some cities have guidebooks that list them. Check your bookstore.
Dealing with the New Airline Regulations
New airline restrictions may limit your access to airplane restrooms while on the tarmac and up to an hour before landing. Many IC patients report this may be even more of an issue with overseas flights; however, there is also much less flexibility on US flights.
The Air Carrier Access Act prohibits discrimination on the basis of disability in air travel. This Act applies to all US airlines and all flights to and from the US on foreign carriers. However, directives from the Transportation Security Administration (TSA) and Federal Aviation Administration (FAA) override this Act. Security and safety concerns for all passengers may trump disability accommodations.
So, we recommend people with IC be very proactive!
- Specific security policies may differ by destination city. Contact the airline ahead of time. Find out the specific policy for your flight about requirements to remain seated. Also find out if there is better access to the bathroom in the back of the plane; if so, you may want to request a seat in the back of the plane.
- If scheduling your flight online, look for boxes to indicate that you have a disability and that you need to pre-board because of special seating due to an “invisible” disability.
- Immediately after you make the reservation, call the airline. Even if you use an online booking service, call the airline directly. Ask to speak with a Complaint Resolution Officer (CRO). CROs are experts in the rights of individuals with disabilities. Let the CRO know everything that you need assistance with, e.g., storing luggage above your seat, using the restroom more frequently than the norm, special meal options, etc. Ask if they can make a note in the passenger record.
- Collect written documentation. Get a letter from your doctor’s office that says you have a hidden disabling condition, called interstitial cystitis, which requires frequent trips to the bathroom. Print information about IC from the ICA website, or order copies of the ICA general brochure. Bring multiple copies of the information so that you can pass it out to airline staff and members of the crew, as needed.
- Pack your ICA restroom access card and consider wearing a MedicAlert bracelet or necklace. Though neither of these items ensure accommodations will be made, they serve to further educate the crew about the severity of your IC.
- Just in case, bring what you need as backup, in case you are not able to get to a restroom for one hour. Given today’s world, this is a harsh reality that might be a necessity.
- Practice your elevator speech. You’ll need to be able to tell your story in just a few minutes. “My name is [insert]. I have interstitial cystitis, or IC, a disabling bladder condition which requires me to have to make frequent restroom trips.”
- When you get to the airport, notify the gate agent. Give them a copy of your doctor’s letter and some information about IC.
- When you board the plane, alert the flight attendants. Introduce yourself and let them know about your condition. Give them a copy of your doctor’s letter and some information about IC at beginning of the flight. This is a busy time for them so they may not stop and read immediately but you could ask them to review the information during takeoff.
- Thank the crew at the end of the flight. Help ensure that airline crews appreciate the severity of IC by thanking them for accommodating you on the flight. If things did not go well, call the airline and report any concerns to a CRO.
Travel safely and let us know how your trip goes. Please post information about your travel experiences on the ICA Facebook page.
Revised Thursday, November 14th, 2019