My girlfriend Mallory and I have become quite avid travelers, both for work and for leisure. Many times, we have traveled with a parent or personal care attendant. This was both a help and a hassle. While a parent or PCA was understanding and able to help us when we needed it, they were sometimes unable to or not always present to do so. We have since learned to travel independently, totally in control of our own complex health needs. We learned to do the best we can on our own, and also to advocate for our needs. That was sometimes tough when we encountered people who couldn't always help or didn't understand our needs. Since meeting, we have traveled together, which can be a huge help to one another, allowing one of us to help the other when they might not be able to do something on their own. We know each other's needs and concerns.
Mallory and I dated long-distance for a year, so we only got to see each other on rare work trips and when it was cheap to fly out to our rendezvous point in Las Vegas. It was a process of scouring the internet for cheap and accessible flights, lodging, and tourism. We were flying in from two different time zones, so if we got to our destination at different times, we would make sure we both had what we needed to have a comfortable stay, which ranged from accessible transportation, an accessible hotel room, a shower chair, and a fridge for medical supplies. People are usually helpful and very accommodating, and we are usually able to get what we need without a wait, hassle, or extra charge. We are discovering which airlines and hotels are best and most impressive in access and accommodation for us. We have had mostly great experiences in transportation, but others were not always so lucky. I can't begin to count the number of horror stories I have heard about mobility equipment being broken on airplanes. I know there are efforts to encourage better cultural competence in this area all over the map.
There have been a number of occasions that weren't so fortunate for us with regard to lodging. Various times, the hotel was not accessible and there was a sketchy way to get inside a side entrance. Not everyone has the same definition of accessible. Also fairly often, there have been problems with us not having adequate fridge space or complete lack of a place to keep important medical supplies. We sometimes had to hound the staff for a space, and that has led to a lot of misunderstandings and waiting, but they have always been very apologetic and even comped meals and show tickets. It never gets any less frustrating, but we are all wiser by the end of it, even after following numerous broken-English-speaking bell hops down to the basement to track down medical shipments and shower benches. Not all rooms meet the needs of some people, which is challenging and frustrating, regardless of the level of care that is required. It's all about learning what works or doesn't work.
We have learned how to easier plan to travel and stay places now, just by calling ahead, being clear, concise, and honest about our needs, and being persistent. It never hurts to tactfully advocate and be assertive. It helps to be patient and honest. If something isn't right, be honest. If something works really well, let them know. Never be afraid to write a letter to advocate for change or commend places for being on-point. It is, after all, their job to listen and make sure their customers have the most comfortable time.
Travel isn't always easy regardless of who you are , but throw a disability or chronic illness in the mix, and it gets even more challenging. It has become a dream of mine to contract as a consultant with local hotels here in Boston first to address accessibility issues, a la 'Hotel Impossible,' and then work with others to help address such issues in other areas. I would love for there to be a specific position in the hospitality field to manage these things. I hope to continue to inspire others to join me in this effort.
*Image courtesy Flickr creative commons.