Last week, we went to DC to present at FAA’s 10th annual National Civil Rights Training Conference for airport operators. This was a three day conference for airport operators, and the third day was devoted to access for people with disabilities.
We took the train up to the DC area, and the ride was uneventful other than Brad and I arguing a bit about what we’d each like to see with ESA access and flying. But keep in mind that this conference is for airports, NOT airlines. Airports are covered under the ADA, which only recognizes service dogs. It was a good way to pass the time, even though after a few hours of discussion, we weren’t able to come up with anything better than the compromise position that we already have.
When we arrived in Alexandria, we normally would take the Metro to the station near our hotel. However, the metro was closed from one stop north of the Amtrak station and all points south for platform construction. They had a bus bridge, so we went to the bus stop. We expected to get on a bus for a couple of stops, then transfer to a subway for one stop, and then walk to our hotel. When we arrived, there were Metro employees there, and they offered to call us a private wheelchair accessible van that would take us the two stops we needed to go without a transfer. Apparently they had accessible vans on call just to help people in wheelchairs do this sort of thing! So we accepted gladly!
While we were loading up into the van, we noticed that the wind was picking up and it was starting to get really cloudy and grey. As we were traveling, it began to rain, and HARD. The wind was whipping and there was a real downpour. We were prepared to do the 6 minute walk from the Metro station to our hotel, but were not looking forward to it in this weather. Our driver was SUPER nice. She overheard us talking and preparing Brad’s electric wheelchair for the downpour (it is hazardous to operate a power chair in a rain storm!). She surprised us by dropping us off right at our hotel door, so we didn’t have to walk or get wet at all! It was SO nice, we gave her a nice tip!
We decided to attend the full day of the conference, and there were lots of great presentations! We learned so much about all sorts of different accessibility features. I was surprised to learn that there are several airports competing to be the most disability-friendly airports in the US if not the world! Most of the presenters were not satisfied to simply meet the minimum requirements of the ADA. Instead they wanted to be as accessible as possible, which is AWESOME!
We learned how airports are making specific sections of their websites for people with disabilities with all sorts of resources on them about the airport and even the airlines that use that particular airport. We learned how many airports are instituting adult changing tables. Many airports are including sensory rooms. One airport in their newest terminal made every single stall in every single bathroom wheelchair accessible. This not only helps people in wheelchairs, but also people with lots of carryon luggage and families. Brad says it’s very common in airports for non-disabled people to take the accessible stall because of their luggage.
The thing I learned that made the most impact in my life is that if a hotel offers an airport shuttle, they must accommodate people in wheelchairs. When we stay at hotels with shuttles, they are NEVER wheelchair accessible and we always have to walk long distances to reach our hotels or use public transportation to access them. If the hotel shuttle is regularly scheduled (ie comes every hour or two hours or something), the shuttle must have a lift or ramp to accommodate people with wheelchairs. If the hotel offers an airport shuttle on demand, their shuttle doesn’t have to be wheelchair accessible, but if a person who uses a wheelchair wants the shuttle, they have to hire an accessible van or other accessible transportation to get that individual to the airport. If they don’t provide equal access to airport shuttles for people in wheelchairs, they can have their permits revoked to pick up and drop off at airports! This is awesome!
At lunchtime, our co-presenters showed up. Wallis from CCI and our good friend Jenine from Aira showed up with their service animals. We went out to lunch together and had a great time talking. Wallis suffered through my very slow fingerspelling and attempts at communicating via ASL, and I was very grateful for the practice!
Just a quick word on ESAs in airports. Even though airports are covered by the ADA which does not include ESAs, they are in an environment where ESAs are extremely common since they are allowed on airlines. Many if not most airports have decided to allow ESA access to accommodate the travelers with ESAs who don’t understand the difference between ACAA and ADA and where it applies in airports vs when flying. In addition, since it is difficult if not impossible to tell ESAs vs SDs vs pet dogs by looks alone (not including behavior), as vests may or may not be present etc, many airports do not have the resources to worry about pet dogs in airports who are out of their carriers.
When it was time for us to present (all presentations available at this link: https://www.faa.gov/about/office_org/headquarters_offices/acr/eeo_training/airport_civil_rights_training_conference/conference_presentations/ and our specific presentation in .pptx format available here: https://drive.google.com/file/d/15InMpYJMPpfcIXv0V4RCXtXs7ug_-DvS/view?usp=sharing ), Wallis went first with an introduction to service dogs and a plea for well behaved dogs only. Jenine went second and talked about service animal relief areas. Most of the pictures she used in her presentation were taken by me, so Hestia appeared frequently in her slides he he he! I went next and talked about psychiatric service dogs and the importance of putting together opportunities for people to train their dogs in airport environments before flying in order to cut down on stress and misbehavior.
Brad went last and talked about both risk and rights. For risk, he talked about keeping everyone safe, including other people with disabilities using animals at the airport. He urged operators to remove dogs that were misbehaving and especially dogs that were aggressive. But also, he wanted them to value the rights of people with disabilities using animals. So if a dog happens to snarf down a french fry, it doesn’t automatically mean they’re not a service dog. And that you shouldn’t judge someone based on the size of their service dog, if it is being held or on a lap, etc. He also previewed our survey results: https://www.psychdogpartners.org/wp-content/uploads/2019/07/USAUSA-Assistance-animal-airport-accessibility-survey-report-July-2019.pdf
Our presentations were well received, and I think we managed to do a lot of education and good in the airport environment for dogs that help people with disabilities.
After the day was done, we went out to dinner with a lot of our airline friends who were also attending the conference. It was fun because many of these people we worked with during the DOT Negotiated Rulemaking a few years ago, and hadn’t seen since. We found a restaurant with enough seating for all of us, that had some gluten free options, and had a great time even though the food and service was a bit lacking.
The next day we walked to the Metro station and requested the accessible van to take us to the stop near the Amtrak station. The driver we got this time was also very nice, and we had a great time talking with him. He also surprised us by not dropping us off at the bus stop (which was about a 6 min walk from the Amtrak station crossing many busy streets), and instead bringing us directly to Amtrak. Another tip!
We were expecting an easy train ride back. Everything seemed to go well until the train arrived, and the conductors saw Brad on the platform. We had purchased our accessible seats (limited number!) well in advance, and normally they are very good about making sure they are available to people who need them. However, when they saw us, the informed us there was no more accessible seating available on the train! They loaded us on anyway. I had to sit in regular seating, which isn’t a problem for me much. However, it is annoying as I usually assist Brad a fair amount during the hours long trip, and by sitting away from him I would not be able to help him.
They put Brad facing sideways in the footspace of two other disabled passengers. Even with his chair in a fully upright position, his feet were sticking out into the aisle.
Normally when we ride Amtrak, Brad faces backward and reclines his chair. This takes up a fair amount of space, so he uses the footspace of one empty accessible seat so that his chair can recline enough.
You might be thinking, well, reclining is for comfort, it’s not necessary. Well you are wrong in Brad’s case if you think this! He has Myalgic Encephelomyelitis (ME). The main symptom of this disorder is that his cells are extremely slow to create energy. This means he has a very limited amount of energy in his cells, and once it is used up, he has no more energy in his cells. Normal people when they use up energy, their cells replenish it pretty quickly. Even if you use up a TON of energy, usually a couple minutes of sitting down will refresh your energy.
When Brad’s cells use up their energy, functions start shutting down. Breathing becomes more and more difficult. Talking becomes impossible. The horrible muscle spasms start. Not to mention the loads of less severe symptoms like brain fog. Sitting upright causes Brad to use his muscles so much that he gets exhausted after a few minutes. He can sit upright for a few minutes at a time. For example, he has to put his chair upright and sit upright to maneuver on the Amtrak lift and through the entryway of the train to get to the accessible seating. Or to fit in a crowded elevator. But that is about the extent of it.
You may be thinking well that sounds pretty uncomfortable, but surely he can power through every once in a while, right? Well, no. One other symptom of ME is that when you overexert yourself, get yourself into a state where your cells are completely depleted of energy, it can risk permanent loss of function. For years when Brad was not yet diagnosed, he made his disorder so much worst by pushing through, working himself to exhaustion, and then never being able to fully recover. Right now he is at the point where we simply cannot risk any further deterioration.
This is why we rarely fly anymore. Sitting upright (and yes even the “recline” position in airline seats is still considered upright for Brad’s muscles) for an hour flight can cause him to need weeks to recover, and can cause permanent loss of function. 10 or even 14 hours on a train where he can remain in his wheelchair in a reclined position is much easier on his body than even one hour in an airplane.
So anyway, we got on the train and they put Brad in a position where he had to remain upright. They said they’d ask the other disabled passengers on the train to move and see if they could get him accommodated anywhere at the next stop. Turns out all the other disabled passengers needed the accessible seats, and were not willing to move for Brad. The conductors came back and told us that in an hour and a half, one disabled individual was getting off the train, and he could have her seat at that time. So he had to sit upright, blocking the aisle with his feet for over an hour and a half!
By the time we were reunited in the car with accessible space 1.5 hrs later, Brad was in terrible shape. He couldn’t talk. He couldn’t think. He was having horrible muscle spasms. The most worrisome thing to me, though, was that he was having such a hard time breathing that I was considering demanding to be let off the train and take him to a hospital.
We think we did figure out why they had overbooked the accessible seating. In most Amtrak cars, there are four accessible seats at the front of every car. In the car we were moved to, there were only two. So it is possible that the computers thought a train of a certain length would have a certain number of accessible seats, but in reality the car used had two fewer seats. Those just happened to be our seats.
We’ve been home a week now, and Brad is still recovering. Yesterday he was so bad that he barely ever spoke above a whisper, and I think he said about 10 sentences to me the entire day.
Overall the trip was a success for service dogs, but another unusual (yet disturbing) Amtrak disability fail. We will be letting them know so they can improve. We still will continue to ride Amtrak and hope to see those improvements.