YOU travel? How the one-in-a-million girl rolls…
Jun 15, 2012, 9:48 pm
#18
Join Date: Nov 2009
Location: Trenton, NJ (PHL, EWR)
Programs: A3 Gold, BA Bronze
Posts: 1,633
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.
I will also be searching for the lightest woman at the gate every flight to carry her aboard.
Jun 16, 2012, 7:47 am
#21
Join Date: Oct 2011
Location: ATL
Posts: 123
Superb
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.
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.
Jun 16, 2012, 1:24 pm
#22
Original Poster
Join Date: Oct 2011
Posts: 55
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.
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!
Hey now! He's taken! 
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. 
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 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.
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.
Jun 16, 2012, 2:56 pm
#24
Join Date: Jun 2009
Location: Metro Detroit
Programs: DL KM
Posts: 628
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!
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!
Jun 16, 2012, 3:42 pm
#25
In memoriam
Join Date: Aug 2002
Programs: AA EXP "Life is good! Really good.""
Posts: 4,923
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.
Jun 16, 2012, 7:55 pm
#26
Original Poster
Join Date: Oct 2011
Posts: 55
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, 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. 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.
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, 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. 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.
Jun 16, 2012, 8:59 pm
#27
Original Poster
Join Date: Oct 2011
Posts: 55
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.
Jun 17, 2012, 12:47 am
#28
Join Date: Aug 2004
Location: Brighton England
Programs: AA Plat, various hotels
Posts: 1,220
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.
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.
Jun 17, 2012, 2:17 am
#29
Join Date: May 2011
Location: CWL
Programs: BA Blue, Hilton Gold
Posts: 300
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?
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?
Jun 17, 2012, 5:25 am
#30
Join Date: Mar 2007
Programs: QF, AA, UA
Posts: 7
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
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