Trip Reports - 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 ½ 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!

Brilliant so far!

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.

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.

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.

+1

Excellent trip report... Your writing style is fantastic... thank you...

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.

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!

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!

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!

Looking forward to more - especially about the cute, considerate boyfriend. Does he have a single brother?;)

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.

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!

FDW

Loved your TR so far! Looking forward for more.
Amazing trip shedule for 2012!!!

Entertaining, as well as enlightening. Keep up the good work and thanks for the report.

Cool - keep up your travelling!

Thank you for your perspective. This is great travel reading!

I won't be patronizing, I'll just say if your writing was poor or uncaptivating I'd pass over this trip report. It's the opposite and I'll stay tuned.



I will also be searching for the lightest woman at the gate every flight to carry her aboard.

Enjoying this report so far. Thanks for sharing. Really interesting and well written.

Amazing! Thanks a lot!

What makes a good NY Times Best Seller is a combination of plot, character development, and of course, excellent prose.

I like the good life like every other person, but they are a dime a dozen on this board. At the same time, people here are genuinely good at writing about the journey (and the destination). This trip report really starts out with a bang that routine trips for 99.9% of us is a huge challenge and the story telling helps the rest of us appreciate that challenge.

Thank you for the kind words, everyone! Special thanks to the engineering minded types for not pointing out the flaw in my math; I know you guys love getting into it over millimeters and decimals and whatnot, so it must have taken a lot of restraint not to correct me. Of course 3000 TM paras in 300 million Americans merely makes me one-in-100,000, not one-in-a-million. I was disappointed when my boyfriend pointed this out. It makes this whole episode seem so much less worthwhile. I mean, that's almost as lame as being struck by lightning.

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.

Really sorry to hear about your dad! It's a tough life, for sure, but there are many things we still can do. Let me know if I can help in any way!

Looking forward to more - especially about the cute, considerate boyfriend. Does he have a single brother?;)

Hey now! He's taken! :p No siblings, but he's run into many guys who expressed that there's no way they'd date "someone like that." Sometimes eliminating the wrong person is worth as much as finding the right one. :)

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.

Sorry to hear! I have several friends who have MS. I think maybe it's even harder to have an illness that progresses and have to deal with ongoing losses. For me, it is what it is. And you're right, MS and TM are "cousins," along with a number of other exotic and -hypochondriacs, go to your happy place- debilitating diseases like Neuromyelitis Optica (NMO), which starts out as a one time event like TM, but then progresses, and people become more paralyzed and blind over time.

I will also be searching for the lightest woman at the gate every flight to carry her aboard.

I can totally see this working on a Southwest flight. Pick some hottie at the gate and tell her, "my friend is paralyzed, and her boyfriend carries her onboard, and they get great service. Do you mind if I carry you?" Even if she says no, you'll be talking, and she'll be intrigued by the story, AND she already knows that you are kind to the disabled, which is almost as good as having a cute puppy. There are a couple of caveats; as you already recognized this would be a poor pickup strategy for a man who likes bigger women. Also, the carry-on procedure derives its charm from the fact that we pre-board. I'm thinking my boyfriend would be a lot less willing to carry me if we boarded with general boarding and had to wait 10 minutes in the aisle before we make it to our seat. Finally, don't bang her head against the luggage bins (Boeing 717 type airplanes are the worst for that, strangely enough, worse than regional jets) and land her smoothly (on the seat, not the arm rest). With a little practice, this could turn into one of the great pickup strategies. I hear wedding bells already. Wait, you're a guy, nevermind. Don't freak out! No wedding bells. A squeaky mattress in a cheap hotel. :)

Great part one. Where is part two? :D:D:D:D

Jenpdx,

Great writing style. Very enjoyable read.

I work w/ ALS patients and hear stories similar to yours. Too bad that airline employees and travelers aren't better informed. And really too bad that some travelers take advantage of the situation with not even a second thought other than for themselves.

I look forward to the next installments!

Well I think you are one-in-a-million despite that pesky math stuff. Great report, enjoyable reading, and very informative. Look forward to hearing about your entire trip in detail.

CX873 SFO-HKG (Business Class)

We arrive at SFO about 40 minutes late and leave the AS gates and head toward the international terminal. I really dislike this side of SFO, because you have to leave the secure area and go through TSA again (on the UA side, there’s a secure connector that allows you to remain airside).

On the way to the CX counter, we stop by the family bathroom, or rather, we try to. In the US, all bathrooms, even in the tiniest Mom&Pop places are required by ADA (Americans with Disabilities Act) to be accessible. If you only have one stall, it has to be accessible. If you have 20, one has to be accessible. And that’s where the problem lies. You see, in airports regular stalls tend to be rather small (or rather, they are normal size, but too small for someone who brings their entire wardrobe as carry on), so lots of travelers gravitate toward the oversized ADA stalls. And who can blame them, how often do you see a person who actually needs them? Sadly, I actually need them, and it’s a huge problem if they’re taken up by others. I can’t wheel into a regular stall. The Quickie doesn’t fit, the door wouldn’t close, and I couldn’t transfer on the toilet. On one of the first flights I took after I became paralyzed, I missed a tight connection in MSP because I had to wait for a mother with 2 kids to vacate the ADA stall. It’s funny, there are 20 stalls, all empty, and the only one I can use is taken up by some thoughtless able-bodied person. People react in different ways when they come out of the stall and see me waiting; some feel bad and can’t make eye contact, others apologize, and some act all annoyed and roll their eyes.

Some airports have recognized the problem with ADA stalls being taken up by able-bodied travelers, and have created single-stall “family restrooms” that are located away from the regular restrooms, and often hidden and poorly marked so they don’t get used very much. SFO has gone one step further. The family restrooms are locked and you have to use the white paging phone to obtain a code to punch into the lock. Only problem, the phone keeps ringing and then goes to voicemail. Funny! We roll around a bit, looking for another (unlocked) family restroom, and I finally settle for the accessible stall in a regular restroom.

If you’ve ever felt that FT is lacking discussion of airport restrooms, this post is for you. In college, I had a marketing professor who was obsessed with trash cans. They’re a store’s handshake, he said, or something like that. He had tons of slides to prove his point. Trash can at Fred Meyer’s—dirty. Target—dirty. Disneyland? So clean you could eat off it. Freak! Well, I don’t know if accessible restrooms are an airport’s handshake, but they are of great importance to disabled travelers. Oddly, a lot of them are poorly designed. There are a few basic features they’re required by law to have, like extra maneuvering space (60in wide), grab bars behind the toilet and on the wall next to it, and a weird raised toilet with a U-shaped seat. I’m not sure why this seat design was chosen; it certainly makes life harder for paralyzed people. Keep in mind that I can’t stand up or walk, so I have to park the Quickie next to the toilet, hang on to something, and lift my body over. Then, sitting on the toilet, I have to yank down my pants, shifting from one side to the other. You can actually try this out: Park your office chair next to a lounger and transfer into it. Then, take your pants off. Remember that you can only use your arms, so if you want to move your legs, so you’ll have to drag them or pick them up. (Consider completing this assignment in the lunch room at work to advance your claim for early retirement on basis of mental health). Whether you actually try or take my word for it, all this is surprisingly hard, and it takes months of physical therapy to learn. Most bathrooms are poorly designed; my pants get stuck in the U-shaped toilet seat, the toilet is extra wide to accommodate your average 450-lbs American and I sink into it, and, worst of all, there’s nothing to lean against (I can’t sit upright because my abs don’t work). Oh, and let’s not forget the auto-flush mechanism that activates every 30 seconds.

But enough of that. We roll to the CX check-in counter and get in the Business class line. Actually, there is nobody in line, so we bypass the maze and go straight to the counter. The check-in only takes a few minutes, and the agent quickly prints our boarding passes and lounge invitation. She asks whether I want to check my “stroller” here or at the gate, and she seems fine with the latter option. Somewhat surprised, we roll off.

The surprise is caused by the fact that this was entirely too easy. You see, most Asian airlines are very paternalistic. They’re really not sure what to do with disabled passengers, but in any case they don’t want to make it too easy. In their respective countries, they treat disabled passengers entirely differently from what the ACAA in the US requires. We actually had a lot of options for this flight. My boyfriend really wanted to fly Asiana First class, but they have a horrible attitude and require a detailed medical form with doctor’s note testifying fitness for travel. Am I contagious? Do I need a stretcher? Do I need oxygen? Scratch that! US airlines don’t have such shenanigans, but who in their right mind wants to fly them? Cathay seemed like a happy median, the website not overly threatening (http://www.cathaypacific.com/cpa/en_US/helpingyoutravel/disabilities), and in any case those BA miles had to be used before they turned into an Avios pumpkin.

In accordance with the request on their website, I called CX to give them advance notice that we’re coming. The agent was happy to assign seats 11A and 12A and understood quickly that I don’t need airport assistance, but he had a strange fixation on the Quickie. Is it collapsible? Well, I’m not sure what that means. The wheels come off and the seat folds over. Does that make it collapsible? The agent didn’t think so, but was relieved that it’s manual, with no batteries, and I’m not bringing oxygen either. How much does it weigh? 20 pounds, I answered quickly, too quickly, perhaps for the agent’s tastes. He inquired, how do you know? HA! Because of America’s obesity epidemic, which has caused the more widespread availability of roll-on scales. You see, I weighed 125 pounds before I became paralyzed. And then they didn’t weigh me at all for 3 years. How do you weigh a paralyzed person? I can’t stand on a scale. But then, in late 2011, we rolled through the bowels of OHSU, the local hospital, and my boyfriend spotted a MASSIVE scale big enough to accommodate your average 900 pound patient. In an oversized hospital bed pushed by a dozen firefighters. Or maybe they use it to weigh ambulances?! In any case, my boyfriend paused briefly and exclaimed, we’re gonna weigh you. So I rolled on, weighed in at 112 pounds with Quickie, and then my boyfriend picked me up and weighed the Quickie without me. It was exactly 20 pounds, making me 92. (I’m a lightweight, huh?). All this seemed somewhat far-fetched to the agent, and he admonished me to search for and bring the Quickie’s manual. Seriously, even if I’m making up the weight (which I wasn’t), who cares? I wish I had consulted the inflight magazine with more care, so I could impress you with the weight of a Boeing 747, but I’m pretty sure the weight of the Quickie is insignificant in the greater scheme of things.

So here we are, at SFO, boarding passes in hand, dealing with another slow TSA day and an angry Jet Blue passenger who asks the ID checker (pointing at me), “how come she gets to cut in front?” and then proceeds to speculate with a fellow traveler what might have happened to me to render me “crippled.” Lol! Able-bodied people say the dumbest stuff! You learn to shrug it off, and in any case today I have bigger problems: my female assist is a trainee. They often are. There are so few truly disabled people traveling, it’s a great training opportunity. Trouble is, they have no idea what to do, and it takes forever. They have to clear every step with their handler, who often isn’t really sure about the proper procedure either (but always happy to make up rules). When I was younger and more idealistic, I used to argue with them when they came up with some ridiculous request, but of course with TSA the argument that “other airports never do that” doesn’t work. I will defend the ROHO cushion I have to sit on, but apart from that, do whatever you want, be my guest and take my shoes and swab until you turn blue. Today’s screening takes forever, and I joke around with my boyfriend about their clumsy procedures, when a passenger who was just patted down admonishes us, “you have to learn to be patient. We’re all in this together.” Ya, right!

After TSA, we go to the duty free store, where a very concerned shopkeeper watches our every move. This happens a lot, people perceive wheelchair users as theft risks. This is silly because my injury is so high up that I can’t even lean forward or to the side without holding on to my wheelchair, so there’s no way that I’d be able to sneak stuff into the backpack that’s dangling on back of the Quickie. But of course salespeople don’t know that. Ok, thanks for having us, we don’t need that treatment (or the overpriced merchandise), so we proceed to the new Cathay lounge.

Where we are eagerly awaited. Looks like the check-in girl realized that she let us off too easy, and contacted the lounge to let us know that they will call an airport wheelchair pusher when we’re ready to leave. We convince the (very pleasant) lounge dragon that we made it this far without help and will make it to the gate as well. The lounge is brand new, but pretty lame as far as international lounges go. The prepared food options are limited (overcooked pasta, clam chowder, salad), but there is a noodle bar with soups made to order. Wonton noodle soup, simple and delicious, so I won’t hold the general weakness of the lounge against them.

About an hour before boarding, we head to an (unlocked!) family bathroom and then to the gate, where our original check-in girl seems overly excited to see us. She dances around the Quickie, waving a double-sided form. Uh-oh! We thought we’d get off easy here, but there’s no escape. The agent places the form on the counter, which is about a foot above my eye level, so I guess my boyfriend will be responding. Can she walk up stairs? No. Can she walk around on the plane? No. Can she feed herself? Will she be a danger to herself or others? (Seriously!) How will she evacuate the plane in an emergency? (My boyfriend says, “I’ll carry her”). Now, all this stuff is strictly speaking illegal under ACAA, with the exception of the evacuation question. The only requirement airlines are allowed to stipulate for flights touching the US is that you must be able to “physically assist in your own evacuation” if you want to travel alone. If you can’t, then the airline may require that you travel with a safety assistant. It’s pretty murky, because obviously I can’t walk off the plane (or complete the evacuation), but I would definitely physically assist in my own evacuation by slinging my arms around my boyfriend’s neck and squeezing so hard that his eyeballs pop out, while he drags me off the plane. I’ve never been given a satisfactory explanation if that’s enough assistance so I could fly alone, but for this flight it’s a moot point because I’m traveling with my safety assistant anyways. He’s slightly exhausted from filling out the form and obtaining a wheelchair tag (to make sure that the Quickie will be delivered to the gate), but I trust that he’s still strong enough to carry me off the plane in an emergency.

He's certainly strong enough to get me on the plane, as we demonstrate a few minutes later. We pre-board along with a fairly large number of older Asian women who all get pushed toward the coach door. My boyfriend carries me through the first class door and drops me off in seat 11A. This plane has herringbone seating in Business, which Air Canada, North America’s least disability friendly airline, considers so special that they won’t let me sit in them (http://www.aircanada.com/en/travelinfo/before/specialneeds/attendant.html). I have no idea, why. These seats are much more paralysis-friendly than the “flat-at-an-angle” seats found in the Business class cabins of DL, LH, AF, etc, in which I slowly slide to the floor (able-bodied travelers often dislike these seats, but imagine what it would be like if you can’t control 70% of your body). So if you’ve been wondering why we’re using our miles in this somewhat inefficient way, there are a lot of things you have to pay attention to if you’re disabled, and the most direct route is often blocked.

The First class purser stops by to introduce herself, and says the heart-rate increasing words, “because of your condition we’ve decided” (pause) “to allow you to use the First class restroom.” Bahahaha! See, that’s why they need to ask all those health form questions; a weaker person might have a heart attack from this cruel joke. So no upgrade for the paralyzed girl (not that we expected it), and we settle into the Business class seat. A 14-hour flight is a huge challenge for me. As I mentioned earlier, the biggest concern for paraplegics is skin breakdown. My lower body doesn’t move at all and my butt is very skinny because my muscles have atrophied, and staying in the same position for too long can cause pressure sores, which can be very serious or deadly. Christopher Reeve died from complications from a pressure sore. To avoid skin problems, I have to sit on a soft cushion in my chair (the above-described ROHO cushion TSA finds so intriguing), and I constantly have to shift my body weight and push up every 15 minutes. When sleeping, I need to be on a soft surface (at home, I have a special mattress), and wake up every hour or so and change positions. This probably sounds pretty annoying (for the first half year or so I had an alarm clock go off every 60 minutes at night), but you get used to it. On a plane, however, it’s a challenge. I sit on my ROHO wheelchair cushion, but because it’s a couple inches thick, when I recline the seat to the fully flat position, my butt is a couple inches higher than my head. We have dealt with this issue before, and there is a simple solution: extra padding. My boyfriend talks to the purser, and they produce a dozen extra pillows plus three extra blankets. Amazing! Don’t try that on US airlines, because they will usually not even have a single extra pillow or blanket. They’ll let you have extras in case there are empty seats, but if the plane is full, you’re out of luck. Last year, we flew AMS-PDX in DL Business, and I had to sit upright for the entire flight because they didn’t have any extra padding for me. Back on CX, my boyfriend stores our extra pillows and blankets in the overhead bin for takeoff and we soon taxi out.

After a long taxi and smooth takeoff, the crew whip out dinner. We try the steak and fish, and it’s pretty tasty, but really, who can eat at 2am? After dinner, I recline to the fully flat position and my boyfriend breaks out the pillows and blankets and makes sure I’m properly padded and tucked in. I start watching a movie on StudioCX, but doze off quickly. The seat is pretty narrow, but I’m fairly comfy with my pillows. I have to be paranoid about my skin; there’s a little sideboard that protrudes from the wall, and if I fall asleep with my butt pressed against it, I could easily get a pressure sore. My boyfriend has internalized the 60-minute sleep schedule as well, and checks up on me frequently. The high wall between the seats makes it hard to communicate, and because I can’t move much the poor guy has to get up whenever he wants to talk to or help me. I know business travelers want privacy, but why can’t they put some couples seats on these planes?

About 3 hours after takeoff, it’s time for my first bathroom break. My boyfriend alerts the first class flight attendant and grabs my purse to prepare the bathroom. Most airplane bathrooms are pretty filthy, especially on US carriers, and I don’t have the luxury of tiptoeing around puddles or squatting over a dirty seat. So normally, a bit of cleanup is required in advance of my arrival. This CX bathroom, however, is spotless. After dropping off my purse, my boyfriend comes to my seat, picks me up, and carries me to the bathroom. It’s huge! No wonder the purser made such a big deal of this, it’s the size of an apartment in Hong Kong! A couple of people are awake and wonder what we’re up to. This often happens. When they board, I’m already in my seat, so they have no idea that I can’t walk. Fortunately we’ve never been tasered by a Sky Marshall, despite our suspicious activity. After a bit, my boyfriend carries me back to my seat. When he returns to pick up my purse, the flight attendant chats him up and asks “what happened to her?” I read on a disability website that this is one of the things you’re not supposed to ask a person in a wheelchair. You’re also not supposed to ask, “were you born this way,” or say things like “you’re pretty,” “I don’t think of you as disabled,” or “you look exactly like Susan” (because she’s the only other wheelchair user you know). I’m not sure about all this PC stuff. Yes, a lot of disabled people are easily upset, and I have met many angry paralyzed people, but this type of restriction goes too far. Who wants to live in a world where the weather is the only safe topic? Anyway, my boyfriend is happy to chat with the flight attendant, and from watching her facial expression I realize quickly what they’re talking about. She looks a bit as though she had just been told that D. O. Guerrero has locked himself in the aft lavatory, clutching his leather briefcase with his sweaty hands. Whether it’s smart to tell people what has happened to me has been subject of much discussion over the years. My mother says, don’t tell anyone “I became paralyzed from a virus,” because who wants to be around that, people are gonna think, “what if there’s even a .0001% chance that she’s contagious?” (I’m not, don’t worry, it’s perfectly safe to keep reading). Sometimes, in the beginning when I was grouchy, children would ask “what happened to you,” and I’d say, “I had the flu.” My boyfriend says that scares them, so I’ve resorted to telling children, “I was very, very sick.” From the flight attendant’s reaction I realize quickly what I won't be saying in SARS-paranoid Hong Kong. If we ever make it there, that is; we’ll probably be met by the health department at the gate. Fortunately the special passenger handling form had a question “are you contagious,” and we said no, so hopefully all will be well.

About 7 hours of flight time remain, and pass uneventful. Pleasant, actually, because I decide to sample the wonton soup and sandwiches, and the flight attendant –realizing that I can’t walk to the galley- showers me with chocolates and all the other goodies they have onboard. A few hours later, during breakfast, I watch the sunrise from my seat –the poor viewing angle is where the herringbone seats are major disadvantage- and we land in Hong Kong on time.

And really too bad that some travelers take advantage of the situation with not even a second thought other than for themselves.

I know this is a touchy subject, so I should clarify what I mean when I use terms like “truly disabled” and “faker.” There are a surprisingly large number of Americans who are deeply convinced that their ingrown toenails limit their ability to perform activities of daily living to the point of rendering them disabled, and who might take issue with someone like me doubting their status. I already talked about the enormous fraud involving handicap parking placards -9% of Oregon drivers assert being unable to walk 200 feet-, but the imaginary disabilities don’t stop there. In a 2004 survey, almost 25% of respondents self-identified as disabled, and in one of my volunteer jobs I recently encountered a guy who attended a rock concert, dove off a stage, bit off a piece of his tongue, and wanted help filing a disability claim. Call me crazy, but from where I sit, all this looks a little bit ridiculous.

At the same time I recognize that there are plenty of people who have a tough life even though they are not as severely disabled than I am. People who suffer from arthritis, had recent chemotherapy, have chronic pain, etc - all this stuff makes life hard, and it may well be appropriate for someone without a visible disability to pre-board. In fact, it doesn't irk me at all when others pre-board; it's really an issue of efficiency, how do we get the plane loaded as quickly as possible? If the current trends continue, maybe some day we'll see zone pre-boarding ("Let me acquaint you with our boarding procedure. First, we will be boarding disabled passengers assigned to zone one, then disabled zone two, followed by disabled zone three. Then, families with young children, followed by active members of the military and those seated in First class. Diamond and Platinum elites, followed by Gold and Silver, or if you're seated in row 6 or one of the exit rows. Then, elite members of our airline partners. Finally, Mr and Mrs Smith in seats 37AB will be invited to board once general boarding is called.)"

Where the abuse becomes hard to stomach is in cases where people like me suffer. Parking is a good example. 9% of Oregonians have a placard (my hunch is that no more than 2-3% qualify under the law), and although many may only use their frivolous placards to park for free on the streets of downtown Portland (where on workdays 20-25% of street parking is taken up by placard holders, who may save in excess of $2000 per year in parking charges), some also take up handicap spots at stores etc. This is unfortunate because only 1.8% of parking spots are designated as handicap, creating a serious shortage. I can't tell you how often I've circled around looking for parking (and in a few cases even returned home when I couldn't find parking at all). I don't care about people scamming free parking (although it's poor policy to grant free parking to such a huge chunk of the population & to make it available basically for the asking), but the marked handicap spots ought to be reserved for those who truly need them. However, this problem is caused by an element of scarcity, which isn't an issue with pre-boarding.

This is a fascinating report.

I can relate to much of what you say about the TSA screening, i took my disabled father to SFO last year and was stunned by what he had to go through to clear security. I admire you for not letting it stop you travelling.

Things like waiting for an accessible toilet might sound trivial to some, but i know how much it impacted on my father. Hopefully your report might help to make people more aware and more considerate.

To the poster thinking of travelling with their disabled father, please do it.
I wrote a report last year on travelling with mine and i can honestly say that the pleasure i got from seeing him enjoying himself was priceless.

An interesting perspective on travel, thanks for your trip report.

Do you ever challenge those who blatantly have no entitlement to disabled parking / facilities? Or is it not worth it due to the possible abuse you may receive back?

Which countries / places would you rate best and worse for accommodating your needs?

Jenpdx

I've read quite a few trip reports and love all the photos and tales of First Class Travel.

Your trip report has, on the other hand, been one of the most informative I've read... love your writing style, but most of all the insight you've provided to your travel.

Your boyfriend is one good and lucky man

Just want to echo all the complimentary comments that have been made so far. This TR is magnificent, and your style is great! Keep it coming!

One of the things I had to do as part of my work was go on a disability awareness course sometime back. As well as learning how to assist those in wheelchairs, you get to be in one yourself for a significant period of time (i.e. an hour or more). Quite apart from learning how to maneouvre the thing up and down kerbs and other skills, even opening and closing doors and using the restroom is pretty challenging — and that's for someone with a normally-muscled body. What it must be like with no movement below bust level is hard to imagine. The amount of mental strength required, let alone physical strength in your shoulders, arms and hands, is immense.

I am full of admiration for you.

Wow! This is such a great read. Thank you for sharing your experiences with us, jenpdx. I am learning a lot from reading your posts. I've read god-knows-how-many flyertalk threads before but this will be the first one I subscribe to.

Glad you were showered with the chocolates - I do enjoy those CX goodies!

What an inspiring story and so well told.Unfortunately what you descibe as happening in Oregon also occurs here in Australia.many is the time you see young able bodied people using disabled car parking spots.The crul irony is that many people who would benefit from the use of such spots are barred from them.As in the USA the law is that you must use a walking aid to get a disabled sticker.many who use a walking aid can go a great distance without discomfort al be it slowly.many of my patients with end stage cardiac disease cant walk far at all but because they dont need a walking aid are denied the disability sticker.
It is the same on aircraft.Just yesterday 3 elderly woman pre boarded using wheelchairs.Only 1 remained on board to be helped off.One was in the second row of coach-you should have seen her elbow a couple of beefy fellows out of the way to be the first coach passenger off the plane!
I continually am amazed at the lengths some people go to to acheive small gains.I have a problem knee and am booked to have a knee replacement plus severe spinal canal stenosis with sciatica at times-also grey haired-but could never claim I am disabled.Yet last year returning from the USA to Australia was pushed out of the way by a young Australian women and her 2 fit male companions as she was claiming she had a bad back-yeh sure.

I am awaiting your further reports.It is such an inspiring one-should be compulsory reading for anyone applying for a disabled permit.

I have observed the handicapped-for-parking-purposes phenomena all too often. And have you noticed that the cars they get out of are disproportionately expensive cars, and they are disproportiately fat?

Thoroughly enjoying your write up.
I command you for your approach on life.

"I know this is a touchy subject, so I should clarify what I mean when I use terms like “truly disabled” and “faker.” There are a surprisingly large number of Americans who are deeply convinced that their ingrown toenails limit their ability to perform activities of daily living to the point of rendering them disabled, and who might take issue with someone like me doubting their status. I already talked about the enormous fraud involving handicap parking placards -9% of Oregon drivers assert being unable to walk 200 feet-, but the imaginary disabilities don’t stop there. In a 2004 survey, almost 25% of respondents self-identified as disabled, and in one of my volunteer jobs I recently encountered a guy who attended a rock concert, dove off a stage, bit off a piece of his tongue, and wanted help filing a disability claim. Call me crazy, but from where I sit, all this looks a little bit ridiculous."

From 2009-2011 I adjudicated claims for Social Security Disability. Trust me when I say that tongue biter doesn't register as a top 50 ludicrous attempt at claiming benefits in my time there.

"With a little practice, this could turn into one of the great pickup strategies. I hear wedding bells already. Wait, you're a guy, nevermind. Don't freak out! No wedding bells. A squeaky mattress in a cheap hotel."

Please. I consider myself a smooth operator with enough points to shack up for the night in a 5 star property using my secondary Irish passport to avoid disclosing my true US identity and being roped into any wedding bells. However, given my propensity for overindulgence in airport lounges, it's more likely that a tragic case of beer goggles would lead to an attempt to carry a women far larger than my knees could support. Hopefully I can get a placard and a decent Quickie until my knees are put back together again.

Great TR - well written, and hopefully enlightening for many readers too. ^

Looking forward to remaining installments.

jenpdx,

Thanks for sharing and I admire you for your courage. In my brief medical career, I saw some devastating neurological sequelae and it was the small minority of patients who came out of them with your attitude. You ROCK.

Your trip report is fascinating too...it's interesting to hear what kind of experiences you have and it get angry when I see people trying to scam the system. :mad: Parking, use of "handicap" stall, etc.

I have observed the handicapped-for-parking-purposes phenomena all too often. And have you noticed that the cars they get out of are disproportionately expensive cars, and they are disproportiately fat?

Nah. At my mother's bank the cars in the disabled spots usually were old to average and had a couple of surfboards strapped to the roof. I'm not kidding.

Jen, this really is an informative and entertaining trip report, and I recommend that you look into writing a magazine article or perhaps recurring piece. It has definitely opened my eyes to a lot of things. I am ashamed to admit that I have been one of those people that uses the handicap stalls in airports when they are vacant because I can easily roll my suitcase in. But not anymore. Thank you for your insight.

Great TR so far. Thank you so much for posting this. I have been curious for a while now as my soon to be sister in law is a paraplegic and we intend to take her with us in our travels. This gives a great introduction in what to possibly anticipate.

You know you've found a good thread when it's referenced on another FF website.

I've had the delight to meet Karen, a wheelchair bound FT'er (it's been a while I can't remember her new FT handle), so I see some similarities with the stories I heard from her.

Looking forward to the ongoing TR. If you make it to Australia (should I say when), I can see an FT meet to organise!

A great start to your TR! Thank you for sharing your experience of travel in a different way than most of us see it. Looking forward to hearing more from you.

Thanks for this TR. A great insight into a world of flying that few people would know.^

The handicap parking permit scammers make my blood boil. Having twice in the last 6 years broken ankles very badly I only used the permit the second time and only until I could use 2 canes to walk on. Anyone who has known someone confined to a wheelchair for the last 25 years like I do realizes what jerks these people who abuse the permit system truly are. My observations are on par with a previous poster about how the cars tend to be expensive German brands and even more shocking cars like Ferrari's and Maserati's which if you need a handicapped permit I'm surprised the person can get in or out of.:mad:

Nah. At my mother's bank the cars in the disabled spots usually were old to average and had a couple of surfboards strapped to the roof. I'm not kidding.

Love it.

Great trip report and great view into your world.

I have a little experience in this area as I have an artifical leg and fly alot. Over the last few years I have flown more than 500k including monthly long haul trips to Aisa and have met a wide range of security staff! My worst experience was in Delhi where they thought it would be a good idea for me to remove my leg and put it through the xray machine, I said no and was then subjected to some very indepth questioning and the comments that all artifical legs in India were made of wood so why was mine beeping. In the US especially ATL I am often asked to stand on my good leg with my bad leg in the air so they can use a special xray - not so bad you may think but I have also had a knee replacement on my "good" leg rendering it less good. I now have absolutely no embarrassment about rolling up my trouser leg to show them the offending article - usually it saves a massive trek to the private exam room so its worth it. My main anxiety is that as I am often travelling alone the extended searches mean my bag, laptop etc is often left abandoned on the belt and they never want you to collect it. I have fears of it all being gone by the time they release me.

I very rarely preboard despite usually being exhausted by the time I reach the gate - all those glaring looks and comments about pushing in have put me off.

Anyway I look forward to reading some more and I am sure it will help me bite my tounge on my next trip!

First, thanks for such a great thread! I'm having so much fun reading it.


So here we are, at SFO, boarding passes in hand, dealing with another slow TSA day and an angry Jet Blue passenger who asks the ID checker (pointing at me), “how come she gets to cut in front?” and then proceeds to speculate with a fellow traveler what might have happened to me to render me “crippled.” Lol! Able-bodied people say the dumbest stuff! You learn to shrug it off...

Wow, you're a lot nicer than I am (or at least may have learned to shrug it off better. I may have smiled sweetly at the jerk and said, "I have transverse myelitis. It started with a bit of a stomach ache so, anytime you're a little sick, don't just shrug it off." That guy would be biting his nails every time his tummy tickled.

Oh, as for the bathroom, I completely understand where you are coming from with the stalls. I will submit, however, that, for a single parent traveling with two kids, there is simply no other option if there is no family bathroom. I'm not saying you don't have the right to be annoyed, but airports simply do a crappy job with facilities. I'll also say, however, that I'd never even thought of this problem until you brought it up.

Mike

Jen

What an amazing report. I just love your writing style and your perspective. I hope they feature this in the next edition of TalkMail...keep it up. Can't wait for the rest.

Great trip report from a different perspective!

Thanks for sharing.

Incredibly fascinating so far. I'm glad you still travel. Of course it's poor etiquette to ask a person "what happened to you", but I have to be honest and say I'd be thinking that too if I saw you traveling. Maybe because you're only in your 20s? I think many people have an innocuous curiosity, and then there are some who are just plain jackasses... like the guy who asked "how come she gets to cut in line?" or whatever. I would have said something to him if I was standing in line... your boyfriend also sounds like a great dude. Can't wait to read more.

Thank you for all the kind comments! The next installment should be out in a few days. I'm trying to figure out how to post pictures.

Do you ever challenge those who blatantly have no entitlement to disabled parking / facilities? Or is it not worth it due to the possible abuse you may receive back?

Keep in mind I live in the US, where any interaction with a fellow motorist can get you shot. :eek: Now, admittedly reports of handicap parking rage are rare, but still, it's unwise to confront people about parking abuse. It's futile because very few of them have any sense that they're doing anything wrong. Their doctor gave them the placard, and that's it. The other problem is that you never really know the person's situation (unless you see them sprinting through the mall); I actually get a lot of angry looks from seniors when I park in handicap spots, and I have twice been confronted by self-appointed enforcers of handicap parking. I drive a sporty car (not a fancy one, though :()and if you saw me in it you'd have no idea that I'm in a wheelchair (I drive using hand controls, in case anyone wonders). As with most things in life, it's easier to shrug it off and not let it ruin your day.

Which countries / places would you rate best and worse for accommodating your needs?

That's a big question, and I was planning on addressing it later on. I am very lucky that this happened to me in a "first world" country; very likely, I would not have survived if I lived in (most of) India or sub-Saharan Africa. The same is true with respect to which places are best to live. In most developing countries, someone with a severe mobility impairment is condemned to staying at home. I spent two months volunteering with a nursing home in Nicaragua when I was able-bodied, and the conditions are just heartbreaking. I'm really grateful to live in the US.

When it comes to "first world" places, I've found that most Europeans (at least those who come from countries with a big welfare state) often can't fathom that "someone like me" could live anywhere else. Most often, I have heard this from Germans. The state would house me, pay a pension, assign a caregiver, and Germans think highly of their efforts to make public buildings "barrier free." But in reality, there's no way I'd want to live there. What I wanted from the very first moment in the hospital was to regain some independence. Get out of the bed and use a wheelchair. Strap on leg braces and stand upright. Leave the house alone. Start driving. Get a job. Those are the little triumphs that make life worth living. And that's not just me, I hear this from a lot of my disabled friends. Be independent, be in charge of your life, make a difference ... isn't that what everybody, whether able-bodied or disabled wants?

I'm not one of those jingoistic "greatest country in the world" Americans, but thanks to the ADA legislation, the US is the best place for someone with a mobility disability, because it allows you to be independent. Every building is required by law to have ramps, power assist doors, counters that accommodate wheelchair users, etc. Curb cuts and handicap parking are prevalent. I can go practically anywhere I want, without help. Compare that to Germany, where you have to be lucky to find a Gasthaus that has a no-step entrance. Seriously, when we were in Bavaria last year, finding a place to eat required major planning, and most places in the countryside were simply off limits. But it's more than just access to buildings. I already spoke of the requirement for every restroom in the US to be accessible. This is a huge challenge in some countries. For instance, last summer we were driving around Lake Starnberg (just south of Munich), and it was impossible to find a restroom I could use. We finally resorted to driving 20 miles to an Autobahn rest stop. There's no good reason why things aren't accessible, but they don't have to be because there are few individual disabled travelers. If the welfare state wanted me to go out, it would send me on a guided trip with attendants, who carefully schedule restroom breaks. Cities like Munich or Salzburg (Austria) publish guides listing restroom locations and accessible restaurants, and a lot of effort goes into at least making transit and public buildings accessible, but honestly, why would I want to live in a place where I'm unable to access 80% of places?

On the other hand, the answer will also depend on a person's needs. I am grateful that I'm a paraplegic and not a quadriplegic. Nor do I have a brain injury. Others with TM aren't that lucky, and one of my friends is a quad who can't move anything. It's the saddest thing, she controls her wheelchair with her chin and writes with software that transcribes what she says. She lives in a state in the Southern US that doesn't like government or taxes and receives $780 per month in Social Security, and 28 hours of paid care per week. That's it. Right now, she lives with her mom, but she has no idea what will happen when her family members can't care for her any longer. For her, the US is probably the worst "first world" country, and Germany would be heaven.

Please. I consider myself a smooth operator with enough points to shack up for the night in a 5 star property using my secondary Irish passport to avoid disclosing my true US identity and being roped into any wedding bells. However, given my propensity for overindulgence in airport lounges, it's more likely that a tragic case of beer goggles would lead to an attempt to carry a women far larger than my knees could support. Hopefully I can get a placard and a decent Quickie until my knees are put back together again.

With such a compelling story, you'll definitely be able to convince a healthcare provider to sign your application for a placard, but the beauty of the system is that you don't have to. Sign it yourself. Nobody checks. :) As for your Quickie needs, consider leveraging your Social Security contacts to obtain one of those "Medicare will pay, guaranteed or it's free" rolling La-z-Boy contraptions advertized on TV. They are total chick magnets!

Great TR so far. Thank you so much for posting this. I have been curious for a while now as my soon to be sister in law is a paraplegic and we intend to take her with us in our travels. This gives a great introduction in what to possibly anticipate.

I think it's important to be realistic about what she can and can't do. I can go pretty much anywhere with assistance. The question is, how much assistance do I want? How much of a burden do I want to be? If you check Youtube, you can find documentaries about paras going to Mt Kilimanjaro or to the jungles of Brazil. The question is, why? Essentially you're pushed/pulled/carried around, and it's an exhausting experience for everyone. I would recommend thinking about easy trips in the beginning, Hawaii, Florida, or even a cruise. The worst thing you can do is to bite off more than you can chew, and your SIL feels like a burden, you get into arguments with your spouse, and your vacation is ruined.

Looking forward to the ongoing TR. If you make it to Australia (should I say when), I can see an FT meet to organise!

Fun! Australia is on our "to do" list. 2013!

My main anxiety is that as I am often travelling alone the extended searches mean my bag, laptop etc is often left abandoned on the belt and they never want you to collect it. I have fears of it all being gone by the time they release me.

Yes, thanks for pointing that out! It's a huge problem when traveling alone. My stuff sits on the conveyor belt and dozens of people walk by while I'm being swabbed and pestered "to keep us safe." I understand from the TSA forum that able-bodied travelers have the same problem when they are detained for extra screening, so I don't think this is unique for disabled travelers (although possibly made worse by the fact that I can't see my belongings). Fortunately I rarely travel alone, but I feel your pain!

Oh, as for the bathroom, I completely understand where you are coming from with the stalls. I will submit, however, that, for a single parent traveling with two kids, there is simply no other option if there is no family bathroom. I'm not saying you don't have the right to be annoyed, but airports simply do a crappy job with facilities. I'll also say, however, that I'd never even thought of this problem until you brought it up.

You have a valid point, and I'm not annoyed by this at all. At smaller airports, where a bathroom only has 2 or 3 stalls, the handicap stall is clearly up for grabs for anyone, and I would never expect an able-bodied traveler to wait for a regular stall to open up while the handicap stall is available (btw, there's a very funny Curb Your Enthusiasm episode about this). And considering how few wheelchair users are out and about, it's entirely ok for able-bodied travelers with children to use the handicap stall even at larger airports. It is puzzling why airports cater so poorly to the needs of travelers with children (or a lot of luggage); sure, Chicago and Atlanta are hopeless, but why does a newer airport like PDX with plenty of space have bathrooms with 20 extra-narrow stalls instead of 12 useful ones?

Definitely looking forward to the next installment.

I guess I've always looked at the handicapped restrooms like this: if it is the only one available, I can use it. Otherwise, it ain't for me and I'm grateful I have a choice.

This is a fantastically unique TR and, like others, I'm waiting to read the rest.

The comments about restrooms reminds me of a hilarious storyline (link to YouTube) (http://www.youtube.com/watch?v=LgedBRXw7fY) in Curb Your Enthusiasm.

Absolutely great TR Jenpdx, terrific writing and a real eye-opener for me. I've taken 9 flights on AA in the last few days and had a little chuckle watching several pre-boards sprint past the wheelchairs on arrival. There is a lady in the Flagship lounge in LAX right now, arrived in a wheelchair with AA assistance, currently walking around the self-service bar and buffet. No doubt will be needing that chair for pre-boarding later
:(
Best wishes to you for your future travels and looking forward to the next installment

Wow - I love your writing style, and it gives a whole new perspective on travel I'd never considered. Can't wait for more! ^

Great TR - insightful, interesting, and great writing. Looking forward to the rest!

Jenpdx, you are truly an amazing writer! Your title caught my attention and when I saw all those words and no pictures I almost navigated away, but first I had to find out the meaning behind your title. I am now captivated. Thank you for sharing your experiences and insights. I second the comment about being published. Can't wait to read more ^

I'm not much of a TR reader, but this is an amazing read. Thanks, Jenpdx. And I'm looking forward to the next installments.

Excellent TR so far Jen.

BTW, I sent you a PM on how to post pics in the forum.

Thank you for all the kind comments! The next installment should be out in a few days. I'm trying to figure out how to post pictures.
You and me both :rolleyes: - I have a monster TR to post and I can't find anything to tell me what I need to know.

Fun! Australia is on our "to do" list. 2013!
We've both committed ourselves now :D. Unless I get to PDX before you get here - I'm looking to come to SEA and GEG later this year...so close :eek:.

Excellent TR so far Jen.

BTW, I sent you a PM on how to post pics in the forum.
Any chance you can help out this IT-phobic FT'er as well fieldeng?? Need to be able to either post the photos direct from my iPhone through the FT App to my posts, or save them to a "Photo Gallery" that I have set up correctly...I think :(

Great trip report! Well done for not giving up!

Fabulous TR! Love your style, so captivating! And not missing the pics at all, so don't worry about them! ^

Any chance you can help out this IT-phobic FT'er as well fieldeng?? Need to be able to either post the photos direct from my iPhone through the FT App to my posts, or save them to a "Photo Gallery" that I have set up correctly...I think
Sent you a PM..

jenpdx - It is a pleasure reading your TR. Inspiring. I love your writing style, and look forward to further installments. :)

I'm really enjoying your TR Jenpdx; it's a refreshing change and you are an AMAZING WRITER....

You should travel the world and blog about it , oh wait, that's what you are doing ;-)

Please post more, we are all waiting with anticipation.

Hong Kong International Airport

The plane arrives at the gate and we wait for the Quickie while the other passengers start disembarking. It spent the trip in the belly of the plane, wrapped in a plastic cover (this is a Cathay specialty; US airlines are not so cautious and the Quickie has suffered numerous scratches in its travel career, usually induced by careless or lazy staff who toss it around, unaware that it’s a $5,000 piece of equipment that is my ticket to independence). Sometimes it takes a long time for it to arrive, but today, it shows up almost immediately, but as is standard procedure it is delivered to the second (economy) door. A member of the ground staff sprints back there and transports it to the front door, and the flight attendants stop the stream of economy passengers passing through the premium cabin so we can leave. How cool is that, I’m not the last person off the plane for once! My boyfriend grabs me and we are on our way. A few feet into the terminal, we are stopped by a wheelchair pusher, who, assisted by 2 or 3 Cathay employees, only agrees to letting us leave unattended if we sign a release form stating that we reject the service. Cathay and their forms!

As we get to the arrivals hall it suddenly it dawns on me why I’ve been brought on this trip. Instead of queuing in a looooong line, we head straight to a priority immigration line for wheelchair users, and we arrive at baggage claim long before the luggage (and most passengers) show up. We collect our luggage and head to the taxi rank, where we are met with some hesitation. I don’t speak Cantonese, so I have no idea what they are saying, but it sounds as though the driver argues with the taxi rank captain that there’s no space for our suitcases and the Quickie. It’s not the prettiest language in the world, and for all I know they might be talking about beautiful shared memories from their children’s graduation ceremony, but they do appear a bit befuddled. They don’t speak English well enough to understand that the Quickie can be taken apart, and there’s no way to demonstrate with me in it. So my boyfriend takes the initiative and lifts me into the cab. Then, he takes the Quickie apart, and there’s big relief when they figure out that we are pros at this. Off we go with suitcases in the trunk and Quickie on the seat next to the driver.

Intercontinental Hong Kong

Choosing a hotel can be a nightmare. Not so much because of accessibility stuff, but because my boyfriend travels a lot for work and has status with Intercontinental, Hyatt, SPG and HHonors. In Hong Kong, that gives you a lot of options. Which is unfortunate because in advance of this trip I had to listen to a lot of back-and-forth about hotels. Do you prefer view or location? Or a good club lounge? Yes, lounge. But that’s up a hill, not good with the Quickie. Ok, view then. No availability on points. Location? No accessible rooms. I love that he’s trying to get everything perfect, but the process is exhausting.

Most hotels in Hong Kong have no or very few accessible rooms, and what little there is is usually in one of the less desirable categories, namely Deluxe Refuse Collection Area View. In the US, hotels are required by law to have accessible rooms spread across various categories, so they can’t get away with having nothing but dumpster views. In Hong Kong, not so much. The Sheraton doesn’t have any accessible rooms at all. The Conrad, Grand Hyatt, and IC each have two, and the recently opened W has eight.

Our first choice is the IC. The main reason for staying there is the view. It’s built directly into Victoria Harbour and has a million dollar view of the Hong Kong skyline. But as you’d expect, the accessible rooms face the back and have a view of a construction site. We have Royal Ambassador status and are guaranteed a (junior) suite upgrade, and the accessible rooms aren’t anything fancy. In email negotiations prior to arrival, the hotel offered free club access if we take the accessible room instead of a suite. But of course we want the view, which means that the room won’t have any accessibility features and my boyfriend has to help me a lot. The compromise after long discussions is that we spend the first two nights at the IC and then move to the W, which has plenty of accessible rooms and is located with easy access to transportation.

When the cab pulls up to the IC, two bellmen rush over and open the doors for us. As my boyfriend takes his sweet time to pay the driver, they grow increasingly confused why I’m not getting out. This happens a lot, but fortunately it never happens more than once at any given place. We stand out, and people immediately start recognizing us. You wouldn’t believe how often each of us get asked, when out in public alone, “where’s your boy/girlfriend?” People I have no recollection of ever seeing recognize me and associate me with my boyfriend. Baristas at Starbucks, strangers on the street, even a PDX TSA supervisor when I recently flew solo to visit my parents (“where’s your counterpart?”). When we were departing Kauai a couple of months ago, a couple of strangers waved at us at the airport and said, we saw you at the Grand Hyatt, you’re such a cute couple! At hotels, this notoriety can work in our favor. Everybody knows us, and we generally are well cared for.

But it’s not all sunshine, and we’ve had our share of abysmal hotel experiences. For instance, we stayed at the Grand Wailea in Maui last year, and they gave us an “accessible” room that wasn’t really accessible. It had a regular size toilet stall equipped with grab bars, but it was way too narrow and there was no way I could roll in. When we asked for a different room, they told us, they’re all like that, nothing we can do. I’m sure they’d tell their able-bodied guests, tough luck, use the toilet in the lobby or find someone to carry you if you want to use the one in your room. When we talked to the manager, his response was, hey, we have annual ADA inspections and they don’t complain. That’s an extreme case, but there’s often something amiss with hotels. You learn to live with it.

On the other hand, we often get amazing treatment. Some hotels in the US have an accessible version of all room types, including their better suites. It helps to tell them at check-in, “we’re hoping to get something a little better; most hotels only have accessible rooms with parking lot views.” Often the response is, oh no, we have suites, let me see if I can find you one. Last year, we spent two weeks in an accessible St Regis suite at the Princeville property, which normally tries to charge even for upgrades to junior suites. If a front desk person doesn’t budge on a higher level accessible room, my boyfriend often asks, “can you look for a non-accessible room? I’ll have to carry her, but it’s worth it if it has a nice view.” And often, a nice room appears out of nowhere. Now, I won’t make you salivate more, but I’m sure you’ll be excited to hear about my upcoming business venture, an agency connecting disabled people to upgrade seekers and status junkies worldwide.

Back at IC Hong Kong, we roll up to the front desk. The counter is a couple of feet above my eye level, but it doesn’t matter much because an employee whisks us to our room for check-in. It’s a weird experience because she completely ignores me. This is unusual. What is usual is that people will talk to my boyfriend instead of me (“what can we get her to drink”); he usually responds by saying, “why don’t you ask her?” We take the elevator to our floor and then roll to the room, my boyfriend holding my hand and pulling me while the IC person acts like I’m not there and tries to make small talk with my boyfriend. Not a great start to our stay. What’s worse, they have what we dubbed “casino carpet,” really thick carpet with enormous friction that makes it very hard to maneuver the Quickie. My boyfriend pulls me for a little bit, but then I have to let go of his hand because my arm is about to fall off.

The room is amazing. It’s a junior suite of modest size, but the view is breathtaking. A full panorama of the harbor and Hong Kong skyline. Because the hotel is built directly into the harbor, it feels a bit as though we’re on a cruise ship. It’s so close to the water, it feels like you could grab the Star Ferry and all the barges going by. Very cool!

Accessibility-wise, the bedroom isn’t bad. I can get to the bed, and the desk and all major features (phone, TV) are accessible. As is the most important feature, the minibar, which is free for Royal Ambassadors. It’s an amazingly well-stocked minibar; what a shame we don’t drink alcohol. One of the cruel jokes of paralysis is that although I don’t have any movement or sensation below my level of injury, I have constant neuropathic pain, caused by nerve endings in my damaged spinal cord misfiring and transmitting wrong information to my brain. The pain ranges from annoying (constant tingling in my legs) to unbearable (my legs feel like they are on fire and I have sharp pains shooting throughout my lower body). To control the pain, I take a colorful array of prescription drugs, which don’t mix well with alcohol. As for my boyfriend, it’s not a good idea to get drunk when lifting fragile goods (i.e., me). Later that day, the hotel is kind enough to take out some beer cans and replace them with extra cranberry and orange juice. They don’t remove something called Pocari Sweat (I hope they didn’t pay the participants of that focus group! Which one’s it gonna be, Pocari Sweat or Vomit Water?), and my boyfriend keeps pestering me to try it. It turns out the name is an apt choice. As would have been Vomit Water.

But I digress. You’re here to hear about accessibility, not soft drinks. The bathroom is pretty challenging. The toilet stall is very narrow, so my boyfriend has to carry me. That’s not a big deal under normal conditions (although I might be at 93 pounds now owing to the Cathay chocolates), but because it’s so narrow, he can’t use proper lifting technique but instead has to lift with his back. The main bathroom has a lot of maneuvering space, but there’s a fuzzy mat on the floor, even worse than casino carpet. I can barely move on it, and every time I turn, it starts moving until it’s all bunched up. My boyfriend rolls it up and puts it in the closet, but housekeeping brings it back every time they come in.

Here’s our pop quiz for the day: How does a paralyzed person shower? Now, if you live in a large urban area and take public transportation, you may think there’s an obvious answer: Not at all. Every city has a smelly older guy in a wheelchair riding the bus all day long. I know. I have met him. You think you have it bad when you get a whiff of his scent, but consider this: He thinks because we’re both in chairs we have a special bond, and he rolls over and talks to me. “How long ya been in that chair?” “Four years.” “Four years, that’s nothing! I’m going on 35!” Umm, ya, and when did they tell you that you could stop showering? Anyway, some of us do shower. Most of us, probably. Not standing up, of course. There’s an assistive device called “shower chair,” which is just that, a waterproof chair that goes in the shower. I can roll up next to it and transfer on. In accessible hotel rooms, these things are sometimes installed permanently (attached to the wall), and sometimes you have to call housekeeping to bring one. You have to be lucky to get someone on the phone who knows what you’re talking about, and indeed many hotels don’t have them at all, even in the US, where they are required by law. In Hong Kong and everywhere else where there isn’t a law, the odds are not in your favor. My boyfriend calls, not expecting much, and after some explanations of what we’re looking for it turns out that they don’t have a shower chair. It’s really not a big deal; when it’s time to shower, my boyfriend pads the bathtub with extra towels (to protect my skin) and lifts me in. It’s not an easy feat because he has to get over a big step and there’s nothing to hold on to. But we’re used to this, and fortunately nothing bad has ever happened. Knock on wood!

We crash out for a bit, and soon what my boyfriend has termed the “IC Hong Kong routine” sets in. The view is so spectacular and the bed so comfy, why head out at all?

Out and About in Hong Kong (Part 1)

But we do head out. The IC entrance is a couple of stories above street level, and a steep driveway leads down to Salisbury Road. It’s mostly for car traffic, but a small portion on the side is partitioned off for pedestrians, and essentially forms a steep ramp. A number of staff are guarding this ramp, presumably to keep (litigious American?) guests from getting hit by trucks entering the adjacent construction site. They spot us and rush over to help, but they seem to be unsure what assistance they should provide. I’m glad they don’t have more training; if they did, they’d probably run into the problem that throws off TSA: Quickie has no handles. The best thing to do (and they figure this out quickly) is to get out of the way and hope for the best. At the bottom of the ramp the regular pathway is blocked due construction, and we have to go down a big step. There are two ways to do that, the textbook and the suicidal way. The textbook (or rather: Quickie manual) way is to turn around and have someone, ideally several people, hold on to the Quickie and slowly ease it down, back wheels first. Nobody does it this way, because the suicidal way is so much more fun. Maybe 10 feet before the drop, you accelerate and then, on the top of the step, lean back, popping a wheelie and (hopefully) landing on the back wheels. It takes some training and doesn’t always work. I’ve fallen out of the Quickie a few times. It’s an interesting experience because you get to crawl around on the floor and try to get back up (bonus if there are lots of bystanders around who are on their cellphones and say omigod, there’s a girl here who just fell out of her wheelchair), and then spend a few days wondering whether you broke anything. Today, no problems at all, which I’m sure is appreciated by my IC watchers.

On our first -and by now very partial- day, we don’t have big plans. We want to take the Star Ferry over to Central and go shopping. The ferry terminal is a leisurely 10-minute walk from the IC, and there aren’t any major obstacles. The ferry terminal is old and not at all accessible. The ferry has an upper and a lower deck, and you have to walk stairs to get to the upper deck. It’s also a few cents more expensive. There are signs all over, wheelchair users lower deck only, contact staff. The woman manning the turnstiles is very helpful, and insists on breaking a HK$100 bill so we can buy a token instead of using our Octopus stored value cards, “so you can enjoy discount.” Disabled people can save HK$.60 (US$.08) off the HK$2.00 (US$.25) fare, and who’d pass on that, especially if it only comes at the cost of missing a ferry and ending up with a pocketful of change, specifically HK$98.60 in mostly HK$2 and HK$5 coins?

The next ferry arrives quickly, and we start looking for the pre-boarding line. Except there isn’t one. It’s a brutal free-for-all, reminiscent of the boarding process Air France uses in Paris. Everybody pushes and shoves to the boarding gate, and the best we can do is to stay holed up in a corner until the masses have passed through. Trouble is, at that time, a chime goes off indicating that the ship is about to leave. There’s a very steep ramp down to the boarding level, and a Star Ferry employee motions to hurry up. We go as fast as possible, but this is pretty dangerous. When we get to the boarding platform, the ferry rolls violently and the gangplank moves up and down, bouncing as high as maybe a foot in the air. A recording plays, “beware of moving gangplank.” No sh*t! Two Star Ferry staff grab the Quickie and pull me on board. Scary!

The ferry has two spots marked “Wheelchair User Private Space,” conveniently located right next to the engine room. Instead of going there, we park on the starboard side and enjoy the view. The water is rough, and I can’t balance out the rolling. I hold on to the railing and hope for the best. Fortunately the trip only takes a few minutes. We wait until everybody has disembarked, and then cautiously wheel –backwards, employing the “textbook” technique- off the ferry. By the time we’re off, the boarding gate has been open for a while, and the Tsim Sha Tsui bound crowd is pushing past us.

We take the elevator up to the covered walkway that leads toward the IFC and Central. Once we get past Connaught Road we decide it’s time to head to ground level. There are no signs pointing to elevators, so we head into one of the buildings to find a way down. Some of these buildings are older and quite obviously weren’t constructed with accessibility in mind. We find a bank of elevators, but they all go up. A guard directs us to an elevator that goes down, however, as we soon find out, not to street level, but a bit below. We soon find ourselves deep below the surface, and only make it back to daylight thanks to the intervention of a helpful janitor, who uses his keys to unlock a service elevator. Phew!

We spend a couple of hours exploring Central. The streets are very busy here, but miraculously nobody runs into me. Most of the stores don’t have no-step entrances, but as long as it’s just a single step, I can handle it. After a while, I figure it out; stores that sell clothing or other junk I don’t need are fairly easy to access. Drugstores, convenience stores, and the like often have 4-5 steps and are off limits, and most of the stores that offer basic necessities (e.g., groceries) are in basements and have stairs.

Much of Hong Kong is very hilly, and anything beyond Queen’s Road (including the Mid-Levels Escalators) is basically off-limits. I could get there via a cab if I had a particular destination in mind, but just rolling around for fun doesn’t make sense. We decide to head back to the IFC Mall, and try to find a building that has an elevator to get us back to the elevated walkway. First, we take an elevator to a bank branch that’s a half floor below the walkway. Then, we head back down and find another set of elevators, but they don’t stop on the floor we need. Turns out the floors of this building aren’t aligned with the walkway, so we have to get out on a “half” floor. A guard calls someone, who shows up with a key that allows them to override the elevator, and get us out on the desired floor. As we arrive on the walkway, the guard bids goodbye, and we realize just in time before he takes off that there are steps between the walkway we’re on and the walkway that goes toward the IFC. The guard summons someone else, who has a key to activate a platform lift that transports me to the lower level walkway. Total time elapsed for covering the 300 feet to the IFC: 25 minutes. Now, it’s probably this bad only because we’re tourists who have no idea what we’re doing, and because we had bad luck. If I lived here, I’m sure I would have optimized our route. We spend a bit of time at the IFC Mall, and then take the Star Ferry back home and go to bed quickly. So jetlagged!

We go to places around the world to see them firsthand. We read these TR's to glimpse of places we have not yet been.

Yours is different. Yes, set in travel but so much more. It is vivid, compelling and expanding. It gives us a glimpse of the challenges you face and, even more, the spirit you bring to the task. Brava!

Thank you for sharing - we await more.

She looks a bit as though she had just been told that D. O. Guerrero has locked himself in the aft lavatory, clutching his leather briefcase with his sweaty hands.



Such a hilarious line!!!!

What? You don't enjoy the Deluxe Refuse Collection Area View rooms? I guess those aren't any better than the Superior Air Conditioning View rooms my family members seem to get.;)

Love your style of writing. It's fantastic.

I just read this thread for the first time. I've been through most of what you wrote about. I've been a wheelchair user for 13 years now. You write very well. The one part of your posts I'm intrigued about is the part about your Roho cushion and TSA. They have never asked to run mine through the X-ray machine, or at least I never heard them ask (check my screen name). I can not get up so they can take it out and put it in the machine. How did they get it from you? Did you have to transfer to some other seat? For me, it is just about impossible to get my Roho out from under me. I'm wondering if some TSA agent somewhere will say that I can't fly because they can't scan my Roho? It hasn't happened yet, but could it happen, in your opinion?

What? You don't enjoy the Deluxe Refuse Collection Area View rooms? I guess those aren't any better than the Superior Air Conditioning View rooms my family members seem to get.;

You guys scored an upgrade! ;)

I just read this thread for the first time. I've been through most of what you wrote about. I've been a wheelchair user for 13 years now. You write very well. The one part of your posts I'm intrigued about is the part about your Roho cushion and TSA. They have never asked to run mine through the X-ray machine, or at least I never heard them ask (check my screen name). I can not get up so they can take it out and put it in the machine. How did they get it from you? Did you have to transfer to some other seat? For me, it is just about impossible to get my Roho out from under me. I'm wondering if some TSA agent somewhere will say that I can't fly because they can't scan my Roho? It hasn't happened yet, but could it happen, in your opinion?

I have read some of your other posts and I know you travel a lot, so you have probably seen as much dumb TSA stuff as have I. So if you ask, could it happen, I have to say, anything can happen when TSA is involved. But is it likely to happen? Not at all IMHO. If an agent asks, you should insist that you can not, under any circumstances, get out of your chair. If necessary, ask for a supervisor or even escalate further (check the TSA forum for the exact job titles of these people; I think the top boss is called FSD, Federal Security Director). You can also ask for someone from the airline to be present. TSA has absolutely no business taking your equipment apart; problem is, if they make up their mind and you refuse, they'll believe you're hiding Osama's ashes in the ROHO.

When they x-rayed my ROHO, they asked me if I could transfer onto a chair, and I (stupidly) said yes. I would guess that with your hearing impairment this situation wouldn't even have come up, because they couldn't have communicated their unusual request. This was a bad idea on so many levels, because the chairs they have aren't particularly safe for transfers (nothing to hold on to, etc). Say, no, I can't move, and I have to sit on this. There's nothing to be gained from giving in to their requests, but there are many things that can go wrong (fall off the chair, damage your skin during a bad transfer, they break the ROHO, etc). Stand your ground and don't worry too much!

Thanks for the response. I've traveled to Europe, and done some domestic flights, but I don't fly as often as I want to. If I flew often then I probably wouldn't need to ask. I really enjoyed these trip reports. Keep 'em coming! ^

Great trip report! Your writing style is so descriptive and engaging! Look forward to future installments. :D

Great report :) Can't wait to see the next installment.

Thank you for your unique perspective !
I traved with my Mother for her one last look at
Her farm and home which were taken from her and
Her Family by the soviets. and no we are not Jewish.
It happened to everyone....
I even had fashioned a luggage carrier that slid in on
Both sides of her wheelchair thereby allowing me alone to
Transport her myself and two bags all together.
While service for the disabled were paltry in the US I found the
Service in Germany to be exemplary. A small van pulled up to
To The aircraft and by a side door with a small lift transported
Both of us to the 'in transit' lounge where we were to board
Our continuing flight. This.bit of kindness has never been forgotten.
I look forward to your continuing saga. Now that I myself face
Traveling challenges due to disabilities. None fortunately as serious as yours

the world recently lost one of the best writers, Nora Ephron. She wrote about everyday things, but with wit and clarity, and more than a soupcon of devilish mischief. Jen, you are a brilliant writer, IMHO on the level of Nora Ephron, and if you are not already, I can see a long publishing career in your future. ^^:D Thanks for sharing with us!

Such a hilarious line!!!!

I chortled, too!

Thanks, jenpdx, for allowing us into your life (and your boyfriend's).
I find myself looking forward to your updates.

Wonderful TR. This would be a wonderful blog. Great information and experiences that non-flyertalk folks would enjoy and should read too. Some editing would be needed though in regards to non-frequent fliers and what we sometimes think of them. ;)

This is just an amazing TR. So informative it doesn't need pictures, I can get images in my mind of Jen waiting in the security line, boarding, aboard the aircraft and in HKG, everything is described so well and with humour and a great sense of not wanting pity or sympathy from anyone. At the risk of offending and I seriously don't mean any, I am so full of admiration for disabled people who take life by the horns and just get on with life.

Thank you Jen for taking the time & trouble to write this, you have an amazing memory (or do you keep notes on a pad to help you remember the smallest detail?).

I am so looking forward to reading the rest of your report and once again, I thank you ^

Brava! Thank you (!) for posting such witty and informative Trip Reports.

While I don't face the level of challenge you do, back in the day I was a disabled student at the local Univ and served on the Program Accessibility Committee. I remember the group having to over justify and fight for every curb cut and automatic door opener.

I'm going to pass this thread along to that office, where the students and staff will appreciate your wonderfully engaging writing style, your humor, and the message that it is very possible to travel the world.

Thank you for taking the time to do this fabulous trip report.

You are my new HERO!. I am in awe of your strength.

You are indeed ... one in a million!!

I know this is a touchy subject, so I should clarify what I mean when I use terms like “truly disabled” and “faker.” There are a surprisingly large number of Americans who are deeply convinced that their ingrown toenails limit their ability to perform activities of daily living to the point of rendering them disabled, and who might take issue with someone like me doubting their status. I already talked about the enormous fraud involving handicap parking placards -9% of Oregon drivers assert being unable to walk 200 feet-, but the imaginary disabilities don’t stop there. In a 2004 survey, almost 25% of respondents self-identified as disabled, and in one of my volunteer jobs I recently encountered a guy who attended a rock concert, dove off a stage, bit off a piece of his tongue, and wanted help filing a disability claim. Call me crazy, but from where I sit, all this looks a little bit ridiculous.

At the same time I recognize that there are plenty of people who have a tough life even though they are not as severely disabled than I am. People who suffer from arthritis, had recent chemotherapy, have chronic pain, etc - all this stuff makes life hard, and it may well be appropriate for someone without a visible disability to pre-board. In fact, it doesn't irk me at all when others pre-board; it's really an issue of efficiency, how do we get the plane loaded as quickly as possible? If the current trends continue, maybe some day we'll see zone pre-boarding ("Let me acquaint you with our boarding procedure. First, we will be boarding disabled passengers assigned to zone one, then disabled zone two, followed by disabled zone three. Then, families with young children, followed by active members of the military and those seated in First class. Diamond and Platinum elites, followed by Gold and Silver, or if you're seated in row 6 or one of the exit rows. Then, elite members of our airline partners. Finally, Mr and Mrs Smith in seats 37AB will be invited to board once general boarding is called.)"

Where the abuse becomes hard to stomach is in cases where people like me suffer. Parking is a good example. 9% of Oregonians have a placard (my hunch is that no more than 2-3% qualify under the law), and although many may only use their frivolous placards to park for free on the streets of downtown Portland (where on workdays 20-25% of street parking is taken up by placard holders, who may save in excess of $2000 per year in parking charges), some also take up handicap spots at stores etc. This is unfortunate because only 1.8% of parking spots are designated as handicap, creating a serious shortage. I can't tell you how often I've circled around looking for parking (and in a few cases even returned home when I couldn't find parking at all). I don't care about people scamming free parking (although it's poor policy to grant free parking to such a huge chunk of the population & to make it available basically for the asking), but the marked handicap spots ought to be reserved for those who truly need them. However, this problem is caused by an element of scarcity, which isn't an issue with pre-boarding.

You need to move here. I go up to my local Lowes and there are 4 parking rows 10 spaces deep right in front of the store for handicap parking, in a parking lot that may only have 300 parking spaces. lol

Thanks jenpdx, your writing is wonderful.

Jen, come back! I just can't wait for your next installment! :)

You are a very good writer. Entertaining and informative at the same time!

This is such an eye opening trip report. Really fantastic. As an architecture major I'm always interested in making life easier for people with various disabilities, and this report was excellent in that regard. Keep it up.

I know this is a touchy subject, so I should clarify what I mean when I use terms like “truly disabled” and “faker.” There are a surprisingly large number of Americans who are deeply convinced that their ingrown toenails limit their ability to perform activities of daily living to the point of rendering them disabled, and who might take issue with someone like me doubting their status. I already talked about the enormous fraud involving handicap parking placards -9% of Oregon drivers assert being unable to walk 200 feet-, but the imaginary disabilities don’t stop there. In a 2004 survey, almost 25% of respondents self-identified as disabled, and in one of my volunteer jobs I recently encountered a guy who attended a rock concert, dove off a stage, bit off a piece of his tongue, and wanted help filing a disability claim. Call me crazy, but from where I sit, all this looks a little bit ridiculous.

I have always wanted in my heart to believe that people like that didn't exist. It was an 'ignorance is bliss' attempt at retaining my faith and humanity. Recently I found out that my aunt used disability services to get a wheelchair ride and preboarding at LAX. Her reasoning was that her cat, which she brought on board, was to heavy for her to carry by herself. So she put on an old air cast from a sprained ankle a year ago and took advantage. She was proud of herself. What the hell is wrong with people like that? I understand the annoyance of being asked about your real disability, but the cynic in me wonders if it being more acceptable to ask might scare a few of the fakers into the background afraid of the potential for shame.

Anyways, thank you for writing I am enjoying it immensely and really find the window into how others travel always interesting.

I'm really enjoying your trip report. It reminds me of my first trip to Asia many, many years ago. I stayed at the IC (then the Regent) and well remember the thick carpeting in the halls to this day. And the thrill of opening the curtains and seeing the HK skyline.

Your reports should be mandatory reading for more than travelers! I worked with a quadripalegic and it was amazing how little people understood about accessibility. I had to call site services several times to complain that he could not get in the handicapped doorway because there was a 4-inch high sill. And he could not use the long ramp from the basement to the first floor because it was too steep and long (and he had to rest and feared rolling backwards all the way to the bottom). And the handicapped spot was not big enough for his wheelchair lift to lower outside of the van. We've come a long way, but still have far to go. Someone like you, with your grace and good humor, will have a positive impact. Keep up the travel and writing; it will make us all more sensitive and aware.

This is by far the most entertaining thing I've read on FlyerTalk.

The woman manning the turnstiles is very helpful, and insists on breaking a HK$100 bill so we can buy a token instead of using our Octopus stored value cards, “so you can enjoy discount.” Disabled people can save HK$.60 (US$.08) off the HK$2.00 (US$.25) fare, and who’d pass on that, especially if it only comes at the cost of missing a ferry and ending up with a pocketful of change, specifically HK$98.60 in mostly HK$2 and HK$5 coins?


This is to a regular, local HK-person perfectly normal. They will bend over backwards if it retains cents in their pockets. Ms Viking is from HK, so I have seen first-hand cash-saving behaviours that continue to surprise and amaze even to this day. And very few things can put a swifter smile on a local HKers face than the realisation that they just saved 60 HK cents. As the old story goes: Stick two dirt-poor HKers in a cave and seal it for five years; then open and watch them drive out in their Mercedes cars, bought with profits they made while trading each other rocks. :D

Thank you so much for this brilliant write-up. I enjoyed every second of it.

Looking forward to your next post.

Jen when are you coming back. I was enjoying your posts.

Enjoyed this perspective - able-bodied folks have a lot to learn about those in chairs. We just dropped my para brother-in-law and his daughter off in BOS for their flight to LHR. He travels a lot now. Apparently when they got to LHR there was some issue about the rental car with hand controls, because relatives in Oxford explained that the rental car company had driven them to Oxford, with the car showing up later.

Anyway, enjoying these posts!

OMG! I have to shine in and be honest, probably it's very selfish of me but i skip TR without photos. I'm a very visual person and enjoy seeing. One of my hobbies is Photography along many others. I just appreciate the colors and forms of whatever surround us.

Let me tell you it's 1:20AM here. I'm almost closing my eyes but couldn't because i really enjoy your writing skills and find very interesting what's to travel on your condition. Your story,your thoughts and pretty much everything.

I'm really glad you have a handsome gentleman as a boyfriend!! Just read the first post, will continue reading tomorrow but great TR. Thanks for your time and posting.


I will also be searching for the lightest woman at the gate every flight to carry her aboard.

Mee, carry me i weight 44kgs!

Any more updates? Can't wait to read more

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.

I really enjoyed reading your trip report. It was entertaining and educational ( it is sometimes hard to understand for not disabled people what kind of red tape airlines come up with in case of transporting disabled people). Thank you for that.

In case you want to fly with a European carrier again. Here is the EU legislation concerning the rights of disabled persons and persons with reduced mobility when travelling by air. In case you already know of it my pardon.

Regulation (EC) No 1107/2006 of the European Parliament and of the Council of 5 July 2006 concerning the rights of disabled persons and persons with reduced mobility when travelling by air (http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2006:204:0001:01:EN:HTML)

EU legislation is binding to all EU member states and can be enforced by court.

I have been paying attention to disabled access/parking/facilities a lot more since this post. In particular watching the people that use them, and in my estimation very few warrant the handicap placard for parking, and almost none of the people I see enter bathroom stalls are handicapped. As for airport assistance to the gate and on the plane. Many I see do require the assistance, but a few acre clearly just taking advantage. This post has opened my eyes more to the issues. Thanks

Any more updates? Can't wait to read more

I was going to post the same thing. jenpdx seems to have quit posting anything.

Jen hasn't logged on since June. Hope everything is all right......

I have been remiss in providing Flyertalk updates, and I apologize for not finishing this trip report earlier! I had a busy summer, finished my Master’s degree, and traveled back to Asia (HK, Kuala Lumpur, and Bali), to Europe (Paris, Switzerland, Germany), and Kauai. Now that the rainy season starts in Portland, I’m ready to dedicate some more time to this trip report. I don’t want to overpromise, so you will likely never hear about how I almost got stuck on an Alaska plane, or what almost superhuman effort was involved in our journey from the Kuala Lumpur low cost terminal to KL Sentral station. But, I will go through my notes and talk about HK and Thailand some more. And, there WILL be pictures, even if it’s the last thing I do!

I have been remiss in providing Flyertalk updates, and I apologize for not finishing this trip report earlier! I had a busy summer, finished my Master’s degree, and traveled back to Asia (HK, Kuala Lumpur, and Bali), to Europe (Paris, Switzerland, Germany), and Kauai. Now that the rainy season starts in Portland, I’m ready to dedicate some more time to this trip report. I don’t want to overpromise, so you will likely never hear about how I almost got stuck on an Alaska plane, or what almost superhuman effort was involved in our journey from the Kuala Lumpur low cost terminal to KL Sentral station. But, I will go through my notes and talk about HK and Thailand some more. And, there WILL be pictures, even if it’s the last thing I do!

I'm glad to hear you are OK and still travelling. :)

Looking forward to your updates, Jen. Really enjoyed so far!

cool, you're back!

I have been paying attention to disabled access/parking/facilities a lot more since this post. In particular watching the people that use them, and in my estimation very few warrant the handicap placard for parking, and almost none of the people I see enter bathroom stalls are handicapped. As for airport assistance to the gate and on the plane. Many I see do require the assistance, but a few acre clearly just taking advantage. This post has opened my eyes more to the issues. Thanks

Please keep in mind there are those of us that do our best to conceal our handicaps (yes, I have more than one as an amputee with Spina Bifida). Don't assume because you've "deemed" they don't look handicapped to you that they don't have handicaps. When I'm on my pain meds I walk around pretty normally. But when they wear off, I start going downhill fast (usually during the long hikes around airports or standing more than 5 or 10 minutes anyplace). Unless you have x-ray vision, and are a doctor, you're making assumptions that are very unfair to many of us. I get pain surges up and down my legs and back that take my breath away and I can't move when they hit without warning about 30 times a day. The pain lasts about a minute or two but I do my best to act like nothing is wrong. The pain meds don't even phase those particular pain surges. But I still travel regardless if people think I don't look handicapped. At least I've succeeded in concealing it from judgmental folks out there that think they know what's going on when they really have no clue I've got bionic parts and misfiring nerves that make it a real challenge to get from point A to point B anytime I travel :)

I have been remiss in providing Flyertalk updates, and I apologize for not finishing this trip report earlier! I had a busy summer, finished my Master’s degree, and traveled back to Asia (HK, Kuala Lumpur, and Bali), to Europe (Paris, Switzerland, Germany), and Kauai. Now that the rainy season starts in Portland, I’m ready to dedicate some more time to this trip report. I don’t want to overpromise, so you will likely never hear about how I almost got stuck on an Alaska plane, or what almost superhuman effort was involved in our journey from the Kuala Lumpur low cost terminal to KL Sentral station. But, I will go through my notes and talk about HK and Thailand some more. And, there WILL be pictures, even if it’s the last thing I do!

Sounds like a busy fun summer! More details please.

There was just recently an article in the nyt about wheelchair abusers during traveling. I'll have to dig it up.

FDW

Sounds like a busy fun summer! More details please.

There was just recently an article in the nyt about wheelchair abusers during traveling. I'll have to dig it up.

FDW

Referenced here: http://www.flyertalk.com/forum/19457096-post30.html

Nice to see you back Jen! And look forward to more stories.

I just read the whole thread while waiting for Sandy to hit.

To be honest I'm a little disappointed. Come on people. How has no one made fun of something called "the Quickie" yet? :)

Other than that, awesome TR.

I just read the whole thread while waiting for Sandy to hit.

To be honest I'm a little disappointed. Come on people. How has no one made fun of something called "the Quickie" yet? :)

Other than that, awesome TR.

For a while the company's advertising slogan was "Everyone needs a Quickie".

I had a work colleague once stop me in the hall and say, "How long have you been rolling around with 'Quickie' stamped on your back?"