18 November 2014

Hurt Society Blog Carnival Call: ePatient Travel Edition

Fellow advocate HurtBlogger and I have been traveling a lot lately — cross country flights, multiple hotel room nights, long drives, public transportation, business and pleasure. All the travel takes its toll. We aren't always as rested as we should be, perhaps have always eaten the best, have logged too many steps, or carried too many things. But our advocacy work is important enough that we are willing to make certain sacrifices in order to represent.

This week she and I have met in San Francisco for a rare day of rest and relaxation prior to a Medicine X planning session. Although she lives in Southern California and I in Western North Carolina, our meeting comes on the heels of trip to Boston and Philly — her for the American College of Rheumatology and me for the American Society of Nephrology. Catching up this morning over breakfast, we discussed our travels. We didn't focus on sights we'd seen or foods we'd eaten. Frankly those kinds of things are rather low on the list compared to networking and learning.

Instead we lamented the physical demands of traveling and dealing with an industry — though often called "hospitality" — that is less than patient-friendly. I've heard more stories in the past two years about patients with invisible disabilities being disbelieved and harassed while seeking needed accommodations such as extra time to board a flight, a room with a refrigerator for medication and nutrition or assistance carrying luggage. Many such things can be had by paying more money, but as patients know — problems most easily solved by throwing money at them are the ones that present some of our greatest challenges.

How might we better address these challenges? As individual advocates, we and many others have voiced our concerns and pointed out problems — but that doesn't mean that we've been successful in making it easier for others. So we're launching an offensive. In preparation for the holidays' busy travel period, HurtBlogger and I are joining forces to bring you the Hurt Society Blog Carnival ePatient Travel Edition that will pull together posts highlighting what it's like to travel as a patient.

We want to hear from you. This isn't just about venting — it's about calling out bad policies and proposing solutions; it's about recognizing those who are getting it right and holding them up as shining examples; it's about sharing tips to help others survive whether that's enrolling in TSA's Pre-Check program or finding hotels with free breakfasts.

Submit your post to us for review and possible inclusion by noon (Pacific) on Saturday, Nov. 21. Be sure to format your submission with the following:

Post Title:
Blog Title:
Twitter Handle:
1-3 Sentence Post Summary: 

Note: perhaps you are not interested in writing a post of your own but know of one that has provided you with valuable tips. Send it to us!

Look for the Hurt Society Blog Carnival ePatient Travel Edition to post this holiday season. 


  1. Totally great idea and I hope I can get it together to write something. I'm recuperating from (too much) travel. Really. No joke.

  2. Thanks to the sensitivity that you have brought to my life, I look for ways to be an ally to people in need, especially when I'm traveling. I'll write a post about the frazzled mom with a baby who everyone was grumbling about because they didn't know her story like I did, after I offered to simply carry something for her. My hope is that corporations can do better, yes, but just as importantly we as fellow travelers can do better, too.

  3. Wheelchair services for travelers are a highly spotty thing, from airport to airport and day to day. In the US they usually speak poor English, sometimes (especially at BOS) making it very hard to say what you need (including "No, don't do that!"). In other countries it varies a lot.

    To this day I've been unable to get a response out of anyone at Iceland Air (or the Reyjkavik airport) about the two travesties my wife and I have had during the short layovers there to change planes. (She needs a wheelchair to avoid long periods standing or walking in airports.) Two take the cake especially:

    We got off and looked for the usual wheelchair attendant. Somebody told us (without knowing, and, apparently, without caring much) "They're on their way - they'll be here shortly." We stood there (note: stood) for a bit - no wheelchairs. I went to the top of the jetway and discovered 3 wheelchairs had been BROUGHT there, but no attendants in site. Nobody even manning the gates.

    I brought the chair down, Ginny got in, and with her *pushing* our carry-ons we went to the top and sought info on our connecting gate. (The IcelandAir flight attendant on board had refused to look up our gate, telling us the gate agent would tell us. Well, there was no gate agent. Unattended.)

    So we went wandering - there were no monitors on the wall, either. Eventually found someone who could tell us we were wandering in the wrong direction, so we reversed.

    Again - the lady in the wheelchair (my wife) was pushing our (two, regulation) carry-ons while I pushed her. We never did find someone to push her - but we did encounter another wheelchair pusher, who was nearly rude in telling us what to do.

    In the other case, there was an agent, who pushed us to the connection gate 45 minutes before flight time and left. It turns out this is a gate where you have to walk down stairs and take a bus to the plane. They never called for pre-boards, and there was no elevator as far as we could tell, and nobody could help us.

    So she got out of the chair and caned her way down the stairs. We missed the first busload so we had to wait. There were no benches! I complained to the bus loading guy, and she looked around and say "You go back inside [100 yards away] and sit on the stairs."

    Both IcelandAir (for its evident not caring, repeatedly, about a woman in distress) and the Reykjavik airport (for totally failing in both cases) can go to hell, as far as I'm concerned. As popular as they are, and as good as they are in some ways, they are not yet grown-ups when it comes to the needs of a modestly disabled patient.

    As I say, I've written twice to IcelandAir and once to the airport itself, and not a peep of reply has come back.

    SO, now we travel with an excellent fold-up "transport wheelchair" from Costco.com. It's so foldable it doesn't have to be gate-checked (so you don't have to wait for them to get it out) - it fits in an airplane's closet!

  4. Thanks for the inspiration to submit a post! The one I wrote is gathering wonderful comments and I started excerpting them on Twitter with the hashtag #TravelWithEmpathy -- maybe useful as we go into this week of heavy traffic at train stations, bus stations, airports, and on highways?

  5. Great blog, Thumbs up for your work.

  6. Just found your site and am loving it so far, keep up the good work. And I must be said that I'm amazed at your skills as well as the design of your blog, is this a custom design or a paid one? I've many blogs related to Medical Websites Design and I'm looking for a good style like this, If you have any idea about it please share here with me.


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