THE BIGGEST ADVENTURE IN THREE YEARS
I haven’t posted for a while for a very important reason: traveling to the Boulder area for our son’s and daughter-in-law’s wedding reception. (I am recovering slowly from the trip, and am finding my writing very much more basic this week – bear with me.)
The wedding was a lovely Zoom event a year ago – it wasn’t deemed safe to have it in person before vaccines in the middle of a pandemic – and under Colorado law, the kids could do the actual wedding themselves by signing a form. They chose to do that, and did a wonderful job of vows with a backpacking theme – talking about how and why they packed the items for a trip.
This year, vaccinated and safer, the wedding reception took place in a venue with the Boulder mountains in the background, family and friends from all over present.
The ceremony was out on the grass in the setting sun – I made it to a seat somehow, and was misty-eyed at the very personal and heartfelt words. Big smiles by everyone. They make a great couple, and have been together a long time now.
So we had to get there
Our son had asked if I wanted a mother/son dance after his wife’s father/daughter dance and theirs as a couple, and I said yes.
I can’t stand very long, or walk very far, and am extremely awkward and unstable on my feet.
So of course I said yes – these things are important, and don’t happen very often.
If at all possible, you do them, because regret is the cost of not trying.
We didn’t have time or occasion to practice before, so it was a one-time event.
My secret weapon was Maggie
Maggie (for the magnesium alloy she’s made from, and the maglev motors that run her) is my Emotional Support Robot Mini Riding Horse – and my bionic legs – and my mobility device.
An Airwheel S8, she is a bicycle seat on a hoverboard. We are a proud member of a subgroup on the Electric Unicycle Forum (even though she has two wheels).
She can be used sitting or standing, lasts a long time and distance on one charge, and I use her around the retirement community inside (elevators and long carpeted halls) and outside (on the Davis greenway, sidewalks, and bike paths). I don’t stand – but the kids and others have tried that without problems.
The trick was getting Maggie there and back – on a plane
To Denver International Airport and back to Sacramento.
I follow John Morris’s Wheelchair Travel blog, and knew this wasn’t going to be simple.
Why? For a bunch of reasons:
- Maggie is not a wheelchair nor a scooter, devices most people are more familiar with as mobility devices.
- Maggie is electric.
- Maggie has lithium batteries built in.
- The batteries cannot be removed – the procedure for replacing one is long and involved.
- Most devices travel in the cargo hold with the luggage, including my walker of many years, Sylvia.
- Most people have never seen an Airwheel S8 (I am a ham; I do demos at the drop of a hat, and talk about my mobility device to anyone who evinces the most minor interest).
My greatest fear was showing up at the airport in Sacramento
and having a particular crew (the pilot’s word is final) or counter staff refuse to take her on the plane at all.
The next biggest were having my mobility device damaged during the trip, refused passage on the way back, or become lost baggage. My very sturdy walker has been affected by the many trips she’s been on, and the bracket I put on the front to hold a basket was broken off on a trip long ago. I breathe a sigh of relief every time the walker shows up again while deboarding.
If Maggie stops working (it has happened – this is my second Maggie), she becomes a 32 lb awkwardly shaped piece of metal and plastics that barely rolls.
There have been a number of incidents with cheap lithium batteries causing fires on planes and in other places, so I understand their concern – in principle. But electric wheelchairs travel all the time.
If absolutely necessary, I would have dragged myself all over the wedding venues with my walker. But what would happen to Maggie if I couldn’t take her with me was a big concern, because airports are not a place you can store things and time would be limited (as well as my energy, which is my constant battle to preserve).
Preparation before hand was key
I spent a lot of time a couple weeks prior to the trip (over an hour on the phone) talking to the person the Accessibility phone at the airline had at the other end. We sort of figure out that it would probably work. This person said a ‘note’ would be placed in my file for the trip.
A few days before the trip, I got anxious. I went to my reservation to see if the note said what it was supposed to say. There was no note. The only codes were the ones I had written into the form when buying the tickets – informing the airline that I needed a wheelchair in the airports, and that I can walk enough (hanging onto seatbacks) to get to my seat, so I wouldn’t require the on-board airline wheelchair to get to my seat.
Nothing about Maggie, nonstandard devices, batteries… all the things we discussed. Nothing I could mention to a gate person or counter person.
So I called again – and this time got someone who said she was Accessibility – and didn’t recognize the name of the other person! At the same phone number. Not a good start.
The second person was much more helpful for a specific reason: with a little searching, and knowing the airline website, she was able to find the specific wording which would let me take Maggie onboard, either in the wheelchair closet or in the cargo. I printed it all out, highlighted the relevant sections, and brought it with me.
I didn’t need to use it – but it could have gone the other way.
The airport trip was easier because I have an Assistant again
She was available to drive us and our luggage to the airport when we needed it. And she promised to bring Maggie home if something went wrong and my mobility device wasn’t allowed on the plane. Fortunately, I didn’t end up needing to call her back.
Sacramento was an easy airport to navigate: it was agreed I would use Maggie to get through TSA, and all the way to the gate, where the final decision cabin/cargo hold would be made – by the crew/pilot.
So far so good – and then, at the crowded gate (we were plenty early), the gate person told me the crew said there was no room on board for my device.
First big hurdle
The crew person who came out said there was no room. But I was allowed to go down the ramp to the plane on Maggie.
And at the door, I asked to be allowed to see the closet.
At this point I’m sort of holding up boarding (btw, disabled people are supposed to board before ANYONE, including First Class passengers, VIPs, people with small children – a right more honored in the breach than in the observance), so they let me on (I’m hanging onto anything I can at this point, with Maggie about to go down to the cargo hold), and I see that the only reason they won’t put here there is because it has a bunch of crew luggage.
So I state unaggressively but unambiguously that my wheelchair device has priority over crew luggage. I may have asked if they wanted to see the printout of their website written information; I don’t remember – the counter people didn’t want to see it either.
At that moment one of the pilots stepped out, and asked if he could help. I explained, said Maggie could be picked up with one hand. The flight attendant removed the luggage, the pilot placed Maggie easily in the closet, and the hurdle was over. I am very grateful – but still shaking – as I make my way to my seat, hanging on to seatbacks. My husband dealt with the carry-on luggage, sending the walker to the cargo hold, and putting our other stuff in the overhead bin.
After landing there was a wheelchair waiting for me, so I pushed Maggie in front of me through the very large airport, down to baggage claim (on a train!), the attendant got us to the door, our youngest daughter was waiting in the cell phone parking lot with the car, and the hotel room was actually there (you can bet I had called, prepared them for late arrival, and reminded them I needed an accessible room – but the ride was still spent with me worrying). I made sure to tip the wheelchair attendant very well – he was very helpful and stayed until we were in the car.
The wedding festivities went well
Except for me having zero energy, and being totally wiped out most of the time, everything in Boulder allowed me to participate as much as I could, because our youngest daughter rented a car and did the driving, all of it, and we fit.
At the actual reception venue (not designed at all for disabled people), I either used Maggie as a live cane (she is very stable that way, if a bit too short), or people carried her in for me and I grabbed whatever I could for support, and we managed.
The mother/son dance went incredibly well – I assayed a twirl at the very beginning, and it worked beautifully, so we did a bunch more, and it was really great to dance for the first time in years. I’m hoping someone has video!
The return trip was fraught
for a bunch of reasons, including Denver having a huge number of visitors leaving over the weekend (we were grateful our flight was on Monday).
We got there early. The counter help person took a snapshot, and texted the request for the on-board cabin to the gate. First step accomplished.
But when we navigated the busy airport and TSA and train with another wheelchair attendant, and got to the gate early – there was no one there, and the food venues didn’t have anything I could eat. I ate an Atkins bar, and prepared to wait.
When the gate person showed up, it was a repeat of the first boarding, with none of these people having seen my device (usual), or the form passengers are supposed to supply to go with their device to the hold (they said they had NEVER seen one – it’s on the website), and they started telling me the closet was too small.
Again, very unaggressively, I explained that Federal regulations require a certain size closet, and that Maggie was smaller than those dimensions. They came back with saying that there are many different aircraft, and not all have the closet (even if they have the number of seats that require the closet – 100), and that they didn’t think the closet door was wide enough.
It all felt as if they were trying to prepare me to be disappointed. At this point I’m completely wiped out by the trip, the wedding, the problems at the hotel (the only accessible feature I needed was a shower seat – and it turned out to be coming off the wall!), the physical and mental gymnastics required to be a disabled person in an able world.
Back to me
I managed to pretend to be positive. To do my little demo of how well Maggie serves me. To be polite and chatty with the gate person, the flight attendant who basically told me it probably wouldn’t happen but they were working on it and that the door was too narrow, and the pilot who came out and said all the same things, but that they were going to try.
This time I was allowed to be the first person down the ramp.
When I got there, I was prepared for failure, but of course the closet door was plenty wide (they have to be able to fit a passenger’s folded manual wheelchair into that space), the on-board aisle wheelchair was there, in the closet, and completely folded out of the way – and Maggie went in sideways through the door with space to spare.
I dragged myself to my seat, shaking again, and somehow survived the flight home, the wheelchair from the plane pushing Maggie in front of me, baggage claim, and was lucky enough to have the Lyft driver I arranged for as soon as we were at baggage claim and the suitcases were coming out arrive in three minutes, manage to load all out stuff, and get us home.
Feedback to the airline
Five days later I found the energy to fill out their survey.
I hate those things. They want you to check all kinds of points worded so only a horrible person would complain – but I put enough into the text boxes where allowed to give them a picture of what happened, to say everyone was very nice (they were – even when saying no a lot), and suggested that more on disabled passengers, wheelchairs, the on-board closet, and nonstandard devices should be done in training (knowing they all get periodic passes through it), and submitted. I doubt it will do any good, but you never know – I’ve done what I could.
My husband submitted his version – and he is a very supportive man, and didn’t step in and take over at any point (much appreciated) who knows exactly what I go through – he had some extra comments, again, very polite – and we’ve both done what we can with their awkward survey.
The future – I plan to travel more, and Maggie is an essential part
I hope this post gets shared (and I will ask John Morris if he wants a version for his site) because other people need to be prepared.
It was a constant obstacle course. Things are designed for able-bodied people. Any one of several hundred points on the track could have been the sticking point. Everything that eventually worked could have failed. I am grateful to have gotten there and back – and still exhausted.
Everything takes more energy and time when you are disabled – and you have far less energy than everyone else. Not fair, but it is what it is.
I saw no one else in their own wheelchair in either airport. That was surprising.
I’m sure the system is so daunting most physically disabled people just don’t try it most of the time. The mental strain is significant – and I can see how hard this would have been on someone less coherent than I was (and I was not doing well), or with other problems processing crowds, noise, and roadblocks.
I thought a wheelchair attendant was the key to getting through TSA efficiently (I cannot imagine what shape I would be in after standing in line – sitting on Maggie for any length of time is not great, especially if we aren’t moving), but it isn’t, and I think, after pushing Maggie, live, in front of me through corridors, trains, and elevators, it would be easier if I just rode her, while pushing the walker in front of me. But the attendant was critical in dealing with luggage, saved some of my energy, knew exactly where to go, and would have been helpful had anything gone wrong. Six of one, half a dozen of the other – and tip money very well spent. And an extra pair of hands is nothing to be sneezed at.
But most of all, I am incredibly grateful for those who
have fought all the previous battles:
- Making sure there is an on-board closet
- Making sure there is a wheelchair that fits in their aisle to get a passenger who can’t walk to their seat
- Creating the Americans with Disabilities Act and its protections
- Creating the Air Carrier Access Act (ACAA), [which] prohibits discrimination in airline service on the basis of disability – and all its protections
- for other bloggers like John who write about the joys and perils
- and who provide feedback constantly on how air travel meets or falls short of these ideals for every day travelers.
Please excuse my lack of editing this down into something shorter and more pithy – I am still not recovered, and this feels below my standards in many ways, but if I don’t get it all down now, much will lose its immediacy.
Please feel free to pass this on.
Please contribute your own thoughts and experiences and suggestions.
Bravo!! Bravo!!!! I am so proud of you for holding your ground and fighting for your rights and maintaining your composure and dignity while doing so. Not turning into a raving mad lunatic like I would probably do. And bravo to the pilot who seemed to just casually put Maggie in the closet like “What’s the big deal you guys, come on…”
Since the form and everything is on the airline website or whatever, sounds like everyone needs a refresher training, just as you said.
Two of the pilots – one on each flight.
It really helps to be right, but losing it would have given them cause to say no.
Instead, I demonstrated how easy it was. Talked Maggie up. Told them I had talked to the accessibility person, and had everything from the airline’s website and the ADA website. I even had a note my doctor signed (which I’ve only used to the management of this retirement community when they called me in, bemused, and we had a little ‘talk’ (ADA allows people to choose ANY mobility device they want).
The hardest part was the first flight, when they’d already said no, and I politely asked to SEE this closet they said was too small…
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I’ve been through airports with canes and with wheelchairs and aides reserved and as you say, it’s always difficult and few people know anything about whether they’re even allowed to help, if they’re inclined to. This is definitely one reason I haven’t been on a plane recently.
I’m so glad everything went well for your trip. Having a husband along to help advocate for you is definitely a big plus!
He’s the best kind of travelling companion: he doesn’t say anything – he just stands there, does the luggage, manages the walker. Kind of like a Guardian Angel. They deal with me, but I have witness and backup.
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Now we need to do a longer vacation to somewhere fun – the Riviera Maya or similar. Get there, have a chance to relax and enjoy before coming back, come back, recover from vacation. Haven’t done that in years.
The airplane part – that definitely gives you pause! When we got back, we went to get tested – we live in a very vulnerable community (all vaccinated, but still) of adults from about 63 to over 100.
Hats off, Alicia. As an able-bodied person, I find all the ‘normal’ hassles of travel exhausting. I cannot imagine how much worse it must have been for you. That said, I’m glad you got there, I’m glad you got that dance, and I’m glad you’ve provided such valuable information for other people with disabilities. Bravo and welcome back. 🙂
I’m STILL recovering – still not writing reliably and comfortably. But one has only so many of these occasions, and I wouldn’t have missed it!
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Totally agree. These are the big milestones in life, the occasions we remember decades after they happen. 🙂
Well done! What an exhausting and stressful experience.
I did it – and it’s taken me over a week to recover – but it was special. Thanks.
P.S. Love the photo of you in your racing gear! 😀
I rarely use that any more – because I wore it to protect against falls when I didn’t know Maggie better. But it is sort of cool.
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Perhaps the lack of other wheelchair users in the airport was because of the covid-compromised immune system, do-I/don’t-I, dance we all have to do whenever we contemplate traveling outside our homes.
Even though it had quite a cost, a thousand ‘bravo’s’ to you for going, and twirling with Maggie, and your son. 😀
No editing required, your ‘pith’ was quite evident. 🙂
I hadn’t thought about covid, but of course you’re right: it would make travel for disabled people even harder, and might be the tipping point between going and it not being worth it.
I am constantly astounded, if I pay attention, by how hard it is for me to do the simple things everyone else does routinely, such as standing at a counter or in a line patiently awaiting a turn. Or finding a different way of drying my hands. Or figuring out how to get out of a room without touching things when they have decided at the hotel to disable the power-assist door (those things are far heavier than other doors, and in our hotel, flanked a REVOLVING door).
Try that last one while pushing your elderly relative in a wheelchair!
Many times, it is just barely possible for a disabled person to do something or go somewhere IF all the accessibility features are working – and exhausting when they are not.
It is like I imagine a video game loaded with monsters to be, except that you don’t get to restart. I was very close to tears several time, and I don’t mean the misty-eyed ones while watching our son walk his bride down the aisle after the ceremony (those go for granted).
I mean when utterly exhausted, still had a long way to go, and felt that it was better to try to be upbeat for the obstacle/person I was dealing with.
A lad with cerebral palsey was on a plane with me recently. They’d asked for aide but no-one helped them. No-one was there to help them use the lift to the apron or help them onto the plane. The lad’s father carried him down the stairs – presumably they weren’t shows in the lift without a member of staff – or maybe it was bust. The cabin crew on the plane were lovely and incredibly apologetic and there was a crew with a wheelchair waiting to help the family when we arrived at our destination. There was nothing I could do to help but my heart absolutely bled for them at check in. I wanted to say something but I didn’t because it looked as if they were humiliated and I didn’t think anything I did or said would help, but merely draw unwanted attention to their plight. And it would be difficult to do with the McOthers as this family were in the property boarding queue and we weren’t, and they had passed the gate and we were at the front of the plebs queue, but there were a lot more priority boarding peps behind them who would also need to be processed ahead of us. So an offer of help from me world have come with a huge kerfuffle. I will write to the airline when I get home though because I thought the lad on boarding should have just apologised to the queue and taken them down in the lift. It was awful – process over compassion.
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Allowed in the lift not shows in the lift.
It is very hard to watch and know you can’t make it better, but a letter from you is a good idea. Better crew training may be necessary – they don’t seem to know what to do all the time.
You (I) shouldn’t have to wave regulations at them just because you need help. Poor family! But they should not have been humiliated. They would have been angry and restraining themselves from letting it make things even worse. They did nothing wrong. Making a fuss can lead to that being the reason you don’t get what you want, but self-control is very hard when you’re disabled and exhausted and it seems they could make things easier and are not.
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This post read like a suspense story with me reading to find out what would happen next. Whew!
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It was stressful from beginning to end; I think that’s part of why I’ve no been able to focus enough to even consider getting back to NETHERWORLD until today – and I had to force myself!
Fortunately, I follow a WRITTEN process as of many years now, and I’ve gone through this disruption too many times to count. But it hurts, and every time I wonder if I’ll make it back.
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I’m glad this all (more or less) worked out for you. I can see how the uncertainty would be stressful, as well as having to constantly explain the situation each time. Hopefully the airlines will update their specifications to include devices like Maggie soon. I imagine new forms of devices are being developed all the time; airlines need to keep abreast of these changes. You’re looking very athletic perched on Maggie there!
Maggie is athletic – I’m along for the ride!
What I experienced is probably as updated as it’s going to get.
ADA has updated its site to include anything the user chooses as a mobility device, including things not normally allowed (stores can’t say they don’t allow hoverboards IF it is used by a disabled person as a mobility device).
And of course each of us needs to be a good ambassador – because people before us fought for rights we need to pass on, and having a mobility device disallowed because of it being used dangerously sets everything back.
But it IS hard for me because it takes SO much energy, and I felt I had to be vigilant and on my game the whole time in each new situation.
I’ve demonstrated Maggie in lots of places – but even though people keep saying they like it, I don’t know of anyone who’s actually bought one to use that way. Someone told me their son got one, but I don’t think it was for use as a mobility device.
My little job, I guess. Glad it’s so much fun. Hope I can keep riding for a long time. Sometimes it hurts to sit that way, especially without moving, and I do have to be able to get on!
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