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YOU travel? How the one-in-a-million girl rolls…


Old Jun 14, 12, 11:23 pm
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Join Date: Oct 2011
Posts: 55
YOU travel? How the one-in-a-million girl rolls…

Ha, made you look! If you’re expecting a trip report involving crazy one-percenter excesses, lavish parties, private jets and escorts, you will be sorely disappointed. I’m not here to throw my hat in the ring for the “how much Krug can you drink on a flight to Asia” competition, but I am a member of another very exclusive one percenter group, or really just a fraction thereof. I am the kind of traveler you almost never encounter in airports, namely the non-walking kind. I’m not one of the sweet old ladies whose loving relatives ordered an airport wheelchair because they fear that she can’t make it to the gate. I sit in my chair all day, every day.

Here’s some background to stake my claim to one-in-a-million fame, and if you’re given to hypochondria, you may want to skip this paragraph. On a sunny day in late March 2008, I started feeling very sick. I saw my physician, who diagnosed me with a UTI and sent me home with some cipro. Over the next few days, I felt sicker and sicker, saw a few more doctors who had no idea what was wrong with me, and finally went to the ER, where they admitted me to the ICU and put me on morphine, but still had no idea what was wrong with me. After a few days in the hospital with horrible pain in my lower back I woke up one morning and couldn’t move. It’s all a blur, but they ultimately figured out what was wrong with me. I was diagnosed with Transverse Myelitis, a very rare neurological condition that is caused by a freak virus that causes the body to attack itself, resulting in damage to the spinal cord nerves. Some people recover a bit, but I did not. To this day, I remain completely paralyzed from the chest down. (Hypochondriacs who were overcome by curiosity and decided to read this paragraph despite my warnings may find some solace in knowing that this condition is exceedingly rare; there are about 10,000 people in the US who had TM, and only about a third of them remain as severely disabled as I am. So spend your time wisely and go back to worrying about that mole on your back. Could it be cancer?).

It’s hard to explain what a crazy life changing episode like this does to you. Everything you’re used to becomes either impossible or much more challenging. You spend months in rehab and have to re-learn the most basic tasks. Your family and friends don’t know what to do with you. Strangers give you funny looks. Children stare and whisper to their parents, “what’s wrong with her?” I was depressed and suicidal for a while –this is common among paralyzed people- but somehow made it through. One of the things that scared me from the very first days in the hospital was the thought that I’d never be able to travel again. Fortunately, it didn’t come to that.

I always loved travel. It didn’t really matter where, as long as there was enough of it – domestic road trips, Hawaii, Europe, South America. I spent half a year bumming around Asia in 2002, lived in Southern France for a year in 2004, and am fluent in French and Spanish. (I should probably say that I’m in my late 20s; people hear wheelchair and assume you’re old). Then, in 2008, travel became unthinkable. Getting across town to go to the mall required planning and effort that most able-bodied travelers don’t expend on a weeklong trip to Europe. In fact, in the first few weeks after I became paralyzed, getting from my hospital bed to the vending machine down the hall would have warranted a trip report worthy of competing with some of the most adventurous explorers. Things slowly got better. In the first two years after becoming paralyzed, there wasn’t much travel. A few trips across the country to see specialists at the Mayo Clinic and Johns Hopkins, very scary and super stressful, hauling paraphernalia of paralysis, medical equipment, leg braces and a walker. In 2010, my boyfriend booked a trip to Hawaii, and it was very unsettling to be on vacation again, with everything so different. But we somehow kept at it, and I got used to travel again. Since then, I’ve taken a few dozen flights, been back to Europe a couple times, along with Asia, Costa Rica, and a few trips to Hawaii.

In 2012, our travel schedule is exceptionally busy, owing to the devaluations in the BMI and BA programs. Our first big trip (this one!) gets us to Hong Kong and Thailand, and we’ll see Bali and Singapore in July, followed by trips to Europe, and Tahiti. Throw in a couple of trips to Maui and Kauai, and you have a pretty decent travel year for your average Flyertalker. And a great year for someone like me.

Alright, join me on our Trip to Hong Kong and Thailand:

AS388 PDX-SFO Coach
CX873 SFO-HKG Business
Intercontinental HK / W HK

TG609 HKG-HKT Business
Le Meridien Khao Lak

HKT-BKK 16.45-18.10 Business
Novotel BKK

TG676 BKK-NRT First
UA876 NRT-SEA First
UA5633 SEA-PDX Coach

AS 388 PDX-SFO (Coach)

We’re in coach for this flight, the only paid ticket on this trip, booked separately because BA (pre-Avios) redemption requirements were much higher if you use more than one partner. Even though a 1.5 hour flight in coach is entirely unexciting, Alaska often has fun surprises for us. They are one of the better domestic airlines -staff tend to be less grouchy and service a bit better- but they don’t really know what to do with disabled passengers.

The great thing about air travel in the US is that, thanks to the Air Carrier Access Act (ACAA), airlines can’t discriminate against disabled passengers. Unlike in Europe or Asia, where airlines may require advance notice or “strive to provide services to disabled passengers” (and the extent of the striving is subject to many paragraphs of fine print), or refuse to serve disabled passengers at all, in the US I can roll up to the gate and they have to allow me onboard. However, this doesn’t mean that airlines make it easy for disabled passengers, or that their staff are aware of the rules.

One of the things we always do is call ahead to let them know that we’re coming & what my needs are, specifically that we’d like to sit as close to the front as possible. I’ll describe the boarding process in a bit, but essentially, it’s much easier to be in the bulkhead row. Trouble is, Alaska guards their row 6 like hawks. My boyfriend has Gold status with Alaska and can select this row without calling, but this carries the risk of being relocated if a “disabled” person requests that row at check-in. So we call to make sure they block the seats for us. Alaska has a lot of grandmotherly types working their call centers, and although they’re usually friendly, competent is not a word that comes to mind when describing their performance. The conversation usually goes like this:

Jen: I would like to request a special service and seating.
AS: Yes, what do you need?
Jen: I am in a wheelchair and would like to get a seat assigned in row 6.
AS: (Pause)
Jen: I can’t walk and will be bringing a manual wheelchair. And I would like to get seats in row 6, because that makes it easier to get on the plane.
AS: Would you like to request wheelchair assistance to get to the gate?
Jen: No, I push myself. I want to let you know that I will be bringing a wheelchair, and I’d like seats in row 6.
AS: (Musings about the different options for wheelchair requests, more probing, until I say, the one I need is “completely immobile” and “brings own chair-manual”).
Jen: And I’d like seats in row 6, please.
AS: Row 6 is reserved for elites and passengers with disabilities.
Jen: Yes?
AS: These seats are for passengers who are immobile.
Jen: I’m a paraplegic. You can’t be more immobile.
AS: Ah, ok. Let me put you on hold while I confirm with my supervisor ... (5+ minute hold) … Yes, the seats are reserved for you. But I have to warn you that they may be reassigned at the gate if a passenger with a disability requests them.

Now, in fairness, the last sentence isn’t guaranteed, but we get it at least 50% of the time. What’s a first for this particular flight, as I discover when I log in to check our seats, is that she managed to request the accommodations for my boyfriend, not for me. But I’m not crazy enough to call back to get that fixed. We have our seats in row 6 and that’s it.

We usually arrive at the airport pretty early, perhaps 2 hours before departure. The first challenge is to find parking. PDX has adopted the crazy rule that holders of disabled parking placards can park for a discounted rate of $10/day instead of $32 (the entire state of Oregon has similar crazy rules—you can park for free in downtown Portland). These benefits have made placards immensely attractive, and 9% of Oregon drivers have obtained one, even though only a small fraction qualify under the law, which requires that you must use a mobility device or be unable to walk 200 feet. (If you’ve never thought about handicap parking, look at who parks in these spots the next time you’re at Target or Fred Meyer’s … most likely the person has no trouble walking 200 feet -or 2000 or 20000, for that matter). Owing to this tremendous abuse, handicap parking is really hard to find at the airport. Normally, our options are to drive all the way to the top floor (most fakers will pick a regular spot on a low floor instead of driving all the way to the top for a handicap spot), or to take a regular spot and have my boyfriend carry me out of the car. (To get out on my own, I need the extra space afforded by the access aisle, so I can transfer into my wheelchair and maneuver around). This time, we park in a regular spot on floor 3, directly next to a handicap spot that’s taken up by a white Hummer.

Check-in at Alaska is relatively painless, even though they’re thrown off by the fact that my boyfriend is listed as disabled and I’m not. The agent is very thorough and pulls up the visa rules for Hong Kong before checking our bags through. Boarding passes only to SFO, though.

Off to TSA. At PDX, wheelchair passengers can bypass using the staff/crew line. This often enrages elite passengers, who can’t believe that there’s someone who pulls right in front of them. After the ID check, my boyfriend stands in the x-ray line with his and my stuff, while I wheel to the front of the line, and position myself near the gate, waiting for a TSA clerk to notice me and start yelling wildly “female assist, female assist.” The wait varies, depending on how busy they are, but today my female assist shows up immediately.

Dealing with TSA is immensely annoying if you’re disabled (not that it’s not annoying when you’re able-bodied). They’re trained very poorly, and invariably say dumb things. It usually starts out when they try to push me and realize that my wheelchair –a sporty lightweight chair that is specially calibrated for my weight/height, and has very little in common with those clumsy airport wheelchairs you may be familiar with; henceforth referred to by its make as “the Quickie”- doesn’t have handles. (It doesn’t have handles because if you do have them, people will invade your personal space and push you. Seriously, good Samaritans everywhere, who know what’s best for you and push you where you don’t want to go). Once we’ve reached their station, the TSA person usually barks, “I need you to stand up for me.” Which is puzzling, considering that my tiny legs are in plain sight, and they have atrophied so much that they’re thinner than the average person’s arms. So yeah, standing up is not gonna happen. Seriously, maybe 1 in 5 times they ask me whether I can stand up, usually it’s a shouted command. After a bit of back-and-forth, we settle on the things I can actually do, namely leaning forward and pushing up. I get the full frisk treatment, and it’s hard to explain how weird and oddly violating it is to see a stranger do this to your body, but be unable to feel it. I’m paralyzed from T8 down (just below my bra wire), so I can feel the bra exam and up, but nothing below that. They normally come up with some silly comment, and today’s is, “there’s something hard on your lower back, what’s that?” Umm, that would be my atrophied spine, thanks for asking! Then, they go off to confer with a supervisor whether I need to take off my shoes, what parts of the Quickie need to be swabbed, and whether anything needs to go through the x-ray machine. One of the biggest threats to a paralyzed person’s health is pressure sores. I sit all the time, and don’t move at all, and my skin can get damaged very easily. (Able-bodied people, even if they sit at work all day, constantly move, if only tiny bits, and their skin “tells” them when too much pressure has built up). Wheelchairs are thus fitted with a big cushion (referred to in the following by its manufacturer, ROHO) that’s designed to prevent skin breakdown. TSA is very curious about the ROHO (as admittedly you could hide some major contraband in there), and about 1 in 3 times they want to x-ray it. I explain why I need to sit on it, and I must be pretty persuasive, because it only has gone through the x-ray a couple of times in all my trips. The swabbing sometimes throws up false positives, because of course the Quickie goes everywhere and picks up a lot of stuff the TSA machines find suspicious. Fortunately, all goes well today, shoes on, no ROHO x-ray, and no second patdown. Only problem, it’s slow TSA day on the other side, where my boyfriend still stands in line with all our stuff. He only had 13 people ahead of him when I wheeled to the gate, but somehow his line didn’t move at all for almost 10 minutes. This is the first time I ever made it through security first.

We head to the gate and find that our flight is delayed slightly, and there has been an equipment downgrade and the flight is now oversold by 17. They search for volunteers and offer a $300 voucher for flying to Oakland 3 hours later, or to SFO the next day. Shockingly, there seem to be a couple of volunteers willing to accept this crappy offer, but the gate area is total chaos, and lots of people will be involuntarily denied boarding. The whole commotion delays the flight by about half an hour, which is not a big deal, given our 4-hour layover in SFO. That may seem excessively long, but this is one of the lessons we learned. Last summer, we flew to Munich via SFO, and due to a delay of the incoming aircraft, our 2 ˝ hour connection time actually shrunk to 32 minutes. We arrived at gate 88 (UA) and had to race all the way to gate 100 in the international terminal (LH) … these gates aren’t nearly as close as the numbering might suggest … my poor boyfriend ran all the way across two terminals holding my hand and towing me and the Quickie; we must have been quite a sight! So today, plenty of connection time.

We sit right next to the door, and end up chatting with the flight attendants. Normally, flight attendants in the US are elderly and not much of a threat, but this crew includes a pretty hot and very tall blonde. Not good. You see, flight attendants like my boyfriend. He’s 6’5” and pretty handsome, but more importantly, all women probably wonder what their man would do if something horrible happened to them, and a guy who sticks with a paralyzed girl immediately passes the marriage material smell test. Especially if he takes his girlfriend around the world. What seals the deal is how we board the plane: Normally, immobile passengers are boarded using an aisle chair (the flimsy contraption you sometimes see parked in jetways). Crews hate them, and they’re horrible for the passenger, because you get strapped in like a hog on the way to the slaughterhouse, but you still feel like you’re about to fall off (remember, I can’t move or feel 70% of my body). Well, when my boyfriend is around, that’s not how we board. Instead, he carries me on the plane. Flight attendants eat that stuff up because (a) no messing with the aisle chair, and (b), how chivalrous and sweet! It’s fine when it’s the grandmotherly United type, who provides slightly less grouchy service and sometimes hands you some candy from her stash, but every now and then there’s a hot Britney (or in today’s case, Trisha) who whispers, “let me mix you a drink when we’re in the air.” So here you go, status seekers: The ultimate secret to good service is to carry your woman on board (and look like you might just be doing charity work).

The flight is uneventful and includes the usual magic that results in “disabled” customers who pre-boarded suddenly being able to walk off the plane just fine at the destination. You have probably noticed the sometimes huge numbers of “disabled” passengers who pre-board. When I get to the gate, there usually is a small crowd of people in the pre-board line. Mostly seniors in airport chairs, but also the occasional pregnant woman or someone with a cane, along with a few people who have no apparent disability, but think they should be allowed to pre-board (my favorite are the folks who walk the mile or so to the gate, whistling a happy tune, and then whip out their handicap placard and dangle it in front of the gate agent). In most cases, agents will pre- pre-board me (i.e., pick me out of the crowd and take me on the plane before pre-boarding commences), along with anybody else who truly needs help getting on the plane (i.e., people who can't walk; the cue is that you bring your own chair). It only takes me maybe 30 seconds to get on the plane; my boyfriend walks on, drops off our stuff and moves the seatbelts to the side, then comes back, picks me up and carries me on. With AS, there usually is a painfully long pause (sometimes 5 minutes or more) before the pre-boards come along (99% able to walk on the plane) and glare at me for getting preferential treatment (those damn young disabled people, no respect for their elders). Maybe 70% of them are infrequent fliers, marveling about where to sit and storing their canes in the aisle, but not really in need of accommodation (think: let's order a wheelchair for mom, it's such a long walk to the plane). Upon deplaning, most of these “disabled” folks undergo remarkable recovery and make it off the plane just fine. I sit until everybody is off the plane, so I have plenty of opportunity to observe. In the probably three dozen flights I've taken since I became paralyzed, I have seen maybe 4-5 pre-boards wait until everybody else has deplaned. Most of them will get up as soon as possible, collect their belongings (in case of the infrequent fliers, sometimes painfully slow and with total disregard for the long line that has formed behind them), and make their way off the plane. And as expected, as we deplane AS388, there are two airport chairs with pushers still awaiting some poor grandmother who was too disabled for regular boarding at PDX, but is now speed walking to her car in an effort to make it home for her 15-mile bike ride before the sun sets.

Ok, I know we only covered a measly 550 miles, but I need a break. I promise the next installment will be out soon, and I’ll get us to Hong Kong, if via meandering back roads that lead through the handicap bathroom, security, and the duty free store. Things take a bit longer if you’re disabled, what can I say? In the meantime, please feel free to comment or ask questions. I have only posted on FT a few dozen times, but I noticed that whenever I say, “I’m in a wheelchair,” it immediately kills the discussion. People are afraid to argue because they don’t want to hurt the poor disabled girl’s feelings or to give advice that might be incorrect and ruin her trip. I get that. But don’t worry, I can take it! So if you think that United flight attendants are youthful, sweet and energetic, or that someone who just ran the marathon and has achy muscles has as much of a right to hold a handicap placard and pre-board as I do, feel free to say it. And if you have questions, ask!
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Old Jun 14, 12, 11:55 pm
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Brilliant so far!
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Old Jun 15, 12, 4:36 am
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I can't argue with you - it seems that being paralysed definitely makes for more interesting travel. Loving the TR so far, you have a really fun writing style.
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Old Jun 15, 12, 5:05 am
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Wonderful TR - great writing skills (wish I had could be so eloquent).

Looking forward to the rest of it. Thanks for showing us a different perspective of travel and enjoy your fantastic trips in the months ahead.
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Old Jun 15, 12, 6:17 am
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Originally Posted by The scotsman View Post
Wonderful TR - great writing skills (wish I had could be so eloquent).

Looking forward to the rest of it. Thanks for showing us a different perspective of travel and enjoy your fantastic trips in the months ahead.
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Old Jun 15, 12, 6:22 am
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Excellent trip report... Your writing style is fantastic... thank you...
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Old Jun 15, 12, 6:33 am
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Thank you. This is extremely helpful as I'm researching travel options for my recently paralyzed father (also from PDX) who wants to travel again. I look forward to the rest.
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Old Jun 15, 12, 6:56 am
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I really enjoyed reading your post, thank you for sharing. I agree with everyone else, you have such a fun writing style! And sounds like you have a great travel companion!
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Old Jun 15, 12, 6:56 am
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You read all sorts of TRs on here, and the ones that interest you most invariably tend to be those that are from exotic carriers or exotic places. This one however really is different and I'm really looking forward to hearing more from your trip!
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Old Jun 15, 12, 7:55 am
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Bravo to you for continuing to travel and not letting your paralysis define you. I look forward to reading the rest of your trip report!
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Old Jun 15, 12, 9:16 am
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Looking forward to more - especially about the cute, considerate boyfriend. Does he have a single brother?
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Old Jun 15, 12, 10:16 am
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At the risk of sounding patronizing, I appreciate hearing from someone like you.
I sort of always wondered what it was like for people in wheelchairs to fly. And the fact that you're a good writer is just icing on the cake!

Keep it up.
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Old Jun 15, 12, 5:34 pm
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Wow. Incredible writing style. And, incredible courage. I can only kind of get what you say; my wife has MS (which I think is related to TM) and while not paraplegic does have some limitations, which many people just don't get.

I'm really looking forward to the rest. So far, e dry thing you've written has really touched me!

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Old Jun 15, 12, 6:41 pm
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Loved your TR so far! Looking forward for more.
Amazing trip shedule for 2012!!!
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Old Jun 15, 12, 7:56 pm
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Entertaining, as well as enlightening. Keep up the good work and thanks for the report.
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