I seem to be starting every post with some version of this nowadays, but, if I had a dollar for…
… every time someone said “It's good to see you out!" then, well, maybe I'd be making some money off of these adventures… but hey at least there's a good story to tell, right?
The irony of this one is that it happened on or close to what was supposed to be the anniversary of one of the landmark legislations of our time, the ADA, which, as my Facebook post earlier that day alluded to, would allow me to use public transportation to go anywhere I wanted, and meet some lovely friends of mine. As it turned out, that didn't happen that day, so I went 4 days later to try again.
Now here's where I will say living in a large metropolitan area has its advantages. First of all, I don't have to use paratransit, also known as the bus from hell, and I even have the option of using a variety of transportation modes to accomplish this, something that I didn't have growing up other than one bus route and my parents' van. Not being isolated can make a huge difference! So now for the story....
I was waiting downtown, having completed leg 1 of the 4 leg bus trip each way. The next bus, which was a cross county luxury commuter bus only picked up at certain locations, as it was an express bus. These buses had the kind of lifts that had a seatbelt on two yellow canes, as if that would somehow stop the Beastmobile from falling off. If everything wasn't secured just right, the lifts won't operate for safety reasons. At this point, I was already running an hour and a half late due to some unexpected changes in the morning schedule. The bus itself was running late as well, and it turned out, after 20 minutes of trying, that the seatbelt was put in the buckle upside down and so therefore it wouldn't work. Luckily, the first driver was very gracious and had a good attitude, apologizing profusely for the delay.
I had no problems on that commuter bus until we got to the station and I awaited the third bus, to take me to a well-known shopping center area. Unfortunately, this driver had woken up on the wrong side of the bed and acted like the worst thing I could possibly do was get on her bus, not realizing that the hooks on one side of the bus for the wheelchair would not release. After cussing and generally being unpleasant, she was able to get me to move to the other side of the bus and we were on our way.
I had been texting my aide as we made arrangements to meet at a Mexican restaurant so she could help me and I could get something to eat, as at this point it had turned into a 4 hour ordeal instead of what would be the usual two, but right before we got there, my phone died. I went in the Mexican restaurant, struggling to open the doors and track down the hostess, who said that there was no one there waiting for me. I decided to go to the bus stop and wait, and then realized that I couldn't remember the first part of her phone number to give her a call. On my way back to the restaurant, my translt card fell out of my wallet into the middle of the road, where I couldn't reach it. So yes, I was that guy who cried in the middle of the parking lot. Luckily, a few minutes later she found me and I was able to be on my way. I told her that I couldn't believe what had happened and I hoped this day was over. Luckily, I was still able to get on the bus to my friend's house and we had a lovely evening, which was the least of my concerns. Maybe I just had bad luck.
I got the last bus out of my friend's neighborhood, which by all calculations would get me home in plenty of time for my nighttime assistant to show up that night. I was exhausted and yet so happy that I still had the chance to have a great evening with my friend, no matter what the ordeal. That was just a messed up day and it had to get better now, right?
Wrong! Murphy's Law was in full effect that day. I had no problems with the first two buses I had to get on, though there was a bit of a waiting period for the second one, so I called my aide to let her know that I was on the way. When I got to the station where I took the express commuter bus into the city, I was so ready to go home. There was a 20 minute wait and it turned out that this was the last bus of the day, so I was so happy all my planning had worked. And then, it happened.
When the bus driver got the lift out of the bus, it wouldn't go all the way up so that the door could be unlocked.
“Maybe it's the seatbelt,” I said, hoping to share some insight from earlier in the day. At first I thought it had something to do with my chair, so I tried to get off the lift and see if it happened again. It did. The guy tried about 10 more times with the same results. I offered to take another bus or a cab, but then I was informed that there was nothing accessible that picked up in Pierce County during an emergency. He said the only option was to wait for another bus from the terminal, and they couldn't leave until it arrived. I told the driver that I was fine to wait at the station and they could continue on their way, because now there was a bus full of people who were pissed off that they were missing their Greyhound tickets or the night shift at work. He insisted that it was not my fault and he had to wait there until the next bus arrived. At this point, I was cradling my forehead and trying not to cry (again!). Close to 45 minutes after the initial departure time, another bus arrived, and I could finally go home. My aide that night was gracious enough to come back even though I had missed the time she was supposed to be there because of this ordeal.
Now, I'm going to do something very uncharacteristic. At first, I was going to send in a complaint to the transit company to fix their buses, or provide another option, but then I realized that this driver that was there when this happened could not have been any nicer or more reassuring about it. So I would like to publicly say thank you to Jimmy, the driver of Sound Transit 594, on the last shift into Seattle on July 30th. Your professional attitude and humorous demeanor made the whole experience bearable even though nobody wanted to be there, least of all a bus full of angry commuters. You handled the situation in the best way you could, and I think everyone thanks you for that, especially me!
The next morning, after many searches on Google, I discovered that there are indeed no accessible alternatives to mass transit in that county. There is “medical” transport service of several varieties that does not advertise that they will actually take you other places besides medical appointments until you call them, but you still have to schedule several days in advance. Even a call to Yellow Cab yielded no success, and I was told to call paratransit, which I don't have because there is no reason why I can't ride the bus (except for this!) Had that alternate bus not been arranged, I would still have been screwed, despite careful route planning and circumstances way beyond my control, and that, if nothing else, should give you something to think about, transit companies! Needless to say I don't plan on traveling that schedule again anytime soon!
Wednesday, September 30, 2015
Friday, September 25, 2015
On Chosen Family
It just struck me the other day how sometimes we don't see the conversations we have with people with any significance. For instance, if I had to count the number of times people asked me if my family even existed when they went home on the weekends, I wouldn't be a broke college graduate. Sometimes, the conversation goes a little something like this:
Person: So, where is your family?
Me: Oh, they're in (other state) and (other state).
Person: And you're here?
Me: Yep
Person: Why don't they take care of you?
Me: What do you mean?
Person: Well, you're disabled, shouldn't you live with them?
Me: Um.....no
Person: Why?
Me: Because that's exactly what I wanted, and that's exactly what they expected of me.
Person: But, I don't understand, aren't they supposed to help you and stuff?
...................
It goes on an on, with people asking even more ignorant and personal questions as time goes on. Although I usually oblige them with an explanation, it's actually none of your damn business where they are or how I make my way in the world. And, other newsflash, nothing bad happened and my parents aren't bad people because they supported my independence. Sure, we have our differences, but I was raised better than to get into that online :-)
The point is that most people don't even realize that this is an inappropriate conversation to be having with someone my age that is not disabled. Actually, it's not even something that is thought of or discussed practically at all. So when I am surrounded by people who have family members in the area, things can get a little interesting. Sure, I wish they were around for my birthday, and Mother's and Father's days are hard, but there's a reason why I have things the way that I have them. And nobody needs to understand that except me.
That being said, everybody expects me to have this support, and while I do have some of it in the area (hi, grandma and grandpa!), that means I have to get creative! So to each of you that has gone out of your way to help me out or do something nice for me without being asked, it means that much more. Let me give you an example:
My freshman year of college, I didn't know much of anybody and I was too scared to go out and join a bunch of things. I had known the 2 or 3 best friends that I needed and that was it. I didn't have time to go meet a million people. But then, at that point I was really struggling. A mentor and dear friend encouraged me to go join a lot of extracurricular activities. And it wasn't until the next year that I found my tribe, if you will.
It turns out that this group of people would be there for me through many hilarious, fun, awkward, terrifying moments, and everything in between. From the time when waiters were rude to people who had different communication styles to the time when I was escorted downstairs like a princess on her throne. Oh, and who can forget the time I ended up in the ER, or the people who stayed up with me when I was sick. Or even the people who wanted to include me in their girls night out. This proved to me that people have more empathy and a better sense of humor than I ever expected from humans. Or, as one of them said to me a couple years ago, “you're part of this family too.” And, the point is, it shouldn't matter where they came from or how the hell they got there. The point is, I will never forget that. Ever.
How do you recognize your family, blood or otherwise?
Person: So, where is your family?
Me: Oh, they're in (other state) and (other state).
Person: And you're here?
Me: Yep
Person: Why don't they take care of you?
Me: What do you mean?
Person: Well, you're disabled, shouldn't you live with them?
Me: Um.....no
Person: Why?
Me: Because that's exactly what I wanted, and that's exactly what they expected of me.
Person: But, I don't understand, aren't they supposed to help you and stuff?
...................
It goes on an on, with people asking even more ignorant and personal questions as time goes on. Although I usually oblige them with an explanation, it's actually none of your damn business where they are or how I make my way in the world. And, other newsflash, nothing bad happened and my parents aren't bad people because they supported my independence. Sure, we have our differences, but I was raised better than to get into that online :-)
The point is that most people don't even realize that this is an inappropriate conversation to be having with someone my age that is not disabled. Actually, it's not even something that is thought of or discussed practically at all. So when I am surrounded by people who have family members in the area, things can get a little interesting. Sure, I wish they were around for my birthday, and Mother's and Father's days are hard, but there's a reason why I have things the way that I have them. And nobody needs to understand that except me.
That being said, everybody expects me to have this support, and while I do have some of it in the area (hi, grandma and grandpa!), that means I have to get creative! So to each of you that has gone out of your way to help me out or do something nice for me without being asked, it means that much more. Let me give you an example:
My freshman year of college, I didn't know much of anybody and I was too scared to go out and join a bunch of things. I had known the 2 or 3 best friends that I needed and that was it. I didn't have time to go meet a million people. But then, at that point I was really struggling. A mentor and dear friend encouraged me to go join a lot of extracurricular activities. And it wasn't until the next year that I found my tribe, if you will.
It turns out that this group of people would be there for me through many hilarious, fun, awkward, terrifying moments, and everything in between. From the time when waiters were rude to people who had different communication styles to the time when I was escorted downstairs like a princess on her throne. Oh, and who can forget the time I ended up in the ER, or the people who stayed up with me when I was sick. Or even the people who wanted to include me in their girls night out. This proved to me that people have more empathy and a better sense of humor than I ever expected from humans. Or, as one of them said to me a couple years ago, “you're part of this family too.” And, the point is, it shouldn't matter where they came from or how the hell they got there. The point is, I will never forget that. Ever.
How do you recognize your family, blood or otherwise?
Adventures of a Shopaholic (And I'm Not Talking About Me!)
Okay, so I'm taking a break from London here for a minute. We all like to tell funny stories, or maybe ones that have important life lessons. Or maybe both. So when this story happened, I knew it would be too good not to share. My aide who was involved in this shall remain nameless out of respect for privacy, but I hope that if she does find this, she can laugh about it today.
Anybody who knows me well knows that I hate shopping. And yet, I seem to end up in the mall more than anyone I know. On this particular occasion, I had just gotten out of a massage appointment where the clinic happens to be in the mall. The person I was with loves to shop and will sometimes do so to the exclusion of anything else. She particularly liked a lot of the stores in this mall, so while I was getting my massage, she was finding everything she liked In Victoria's Secret. When I was done, I told her that there was a pair of boots I wanted to go look at in Forever 21 (which I now own.) If you've been shopping with me, you know that I'm a very single minded shopper, I get what I want and then I'm out of there. My companion, however, delighted in saying how cute everything was and that I should buy it because of that. I said “yes, it's nice, but I don't need to buy everything I see.” I don't know if this is because I'm cheap, or I try to be responsible. I'll go with responsible (yes, my parents are openly laughing at me right now).
Anyway, so we go into Forever 21, and my aide tells the girl to bring out a size 7 in these boots. I'm nervous and I try to be nice and make small talk with the salesgirl, who doesn't know how much I hate shopping. My aide then proceeds to tell her that I'm going on a hot date with someone that I wasn't, and, later, that it was my birthday, neither of which were true. On top of that, when she says my name, it sounds like “Ana,” so that's what the salesgirl keeps calling me. They team up and decide that I need an outfit and a bunch of accessories including bright red lipstick and nail polish. I went in there to buy a $20 pair of shoes, and I came out with at least $40 worth of stuff. Moral of the story: never drag a shopaholic within a 25 mile radius of the mall. (Oh, wait, this is Mall City, that's impossible!)
Anybody who knows me well knows that I hate shopping. And yet, I seem to end up in the mall more than anyone I know. On this particular occasion, I had just gotten out of a massage appointment where the clinic happens to be in the mall. The person I was with loves to shop and will sometimes do so to the exclusion of anything else. She particularly liked a lot of the stores in this mall, so while I was getting my massage, she was finding everything she liked In Victoria's Secret. When I was done, I told her that there was a pair of boots I wanted to go look at in Forever 21 (which I now own.) If you've been shopping with me, you know that I'm a very single minded shopper, I get what I want and then I'm out of there. My companion, however, delighted in saying how cute everything was and that I should buy it because of that. I said “yes, it's nice, but I don't need to buy everything I see.” I don't know if this is because I'm cheap, or I try to be responsible. I'll go with responsible (yes, my parents are openly laughing at me right now).
Anyway, so we go into Forever 21, and my aide tells the girl to bring out a size 7 in these boots. I'm nervous and I try to be nice and make small talk with the salesgirl, who doesn't know how much I hate shopping. My aide then proceeds to tell her that I'm going on a hot date with someone that I wasn't, and, later, that it was my birthday, neither of which were true. On top of that, when she says my name, it sounds like “Ana,” so that's what the salesgirl keeps calling me. They team up and decide that I need an outfit and a bunch of accessories including bright red lipstick and nail polish. I went in there to buy a $20 pair of shoes, and I came out with at least $40 worth of stuff. Moral of the story: never drag a shopaholic within a 25 mile radius of the mall. (Oh, wait, this is Mall City, that's impossible!)
(Image: a black-and-white striped sleeveless dress with a sheer neck and middle, on top of which there are a pair of black sunglasses, a black headband with a bow, black rose earrings, and a pair of black ankle boots with studs. This is all displayed against my rainbow striped comforter.)
(Image: me smiling sarcastically with my mouth shut at the camera, wearing a giant pair of black sunglasses and a headband with the tags still attached. I am wearing a teal blue T-shirt that says “Discover campus.” I'm wearing multiple bracelets and necklaces that they had me try on. The Forever 21 store is visible in the background.)
Defying Gravity
Now, I get to write about what was possibly one of my favorite days of the trip.
You've heard me say here before that I might have been a little bit obsessed with being on time during this whole entire experience. While, that's what I get… because after our wonderful misadventures in Paris, it turned out that a lot of members of my group were having security problems which caused a train delay. Luckily, this was not the case for us, but either way several trains ended up getting stuck in the Chunnel (that's the Channel Tunnel between England and France underwater) so I had no choice but to take a nap aboard the train after all that worrying. Turns out we were an hour late that day, as were some of our travel companions.
All we had was theater class that day, we were discussing why everybody was not fond of “A Small Family Business” which we had just seen the last class day before. Compared with the acting delivery, set design, location, props and other elements of the plays that we had seen, it was still good, but it just was not the outstanding caliber that we had come to expect from the West End, which brings me rather nicely to this day.
As I said earlier, I had been sicker than a dog the whole weekend, and there was no way to refund the purchase price of those train tickets without exorbitant fees, so I decided to suck it up, I was going to France, dammit! So, it would only follow that I wanted to spend the whole week thereafter curled up in a blanket. But I couldn't. Not today. Because we decided that it was the only night we would be able to see Wicked, the musical. So, after class and purchasing some cold pills from the local Boots pharmacy, we decided to schlep over to the Apollo Victoria Theatre by bus. When we got there, I was doubly disappointed, because the lift platform up the front stairs was not working, so my friend had to go in and get somebody from the box office to come outside so they could talk to me. When I asked about “day tickets," they said there were none available. These are the tickets that you have to purchase the day of and they allow you really good discounted seats (great for students!) so the fiirst few rows of the house are full at every show. But then she said “Come to think of it , if you need a wheelchair, the accessible stalls are actually cheaper, and we do have those available!” I was so happy, because for £15 each (that's less than the price of dinner for 2), we were going to see a musical!
I don't know why, but I remember feeling so much better that night, and it was one of the best nights of the entire trip, even if it ended in me giggling maniacally. It was such a great performance, but I better stop before I start singing (because I will!) The sets and special effects were great, and they even had many of them that were suspended from the air. We shared ice cream as I sang along to every single thing, and I was just so happy because basically the musical is about being different and how that is okay, and I don't know why but I was happier than I had been on the entire trip previously. The West End shows end kind of late, but you would think there would still be some restaurants open for theatergoers afterward. But alas, this is not America! So we ended up eating at one of the most American places I can think of: a 24-hour McDonald's. My first Double Cheeseburger that I had had in about 10 years, and I was still singing all the way home!
You've heard me say here before that I might have been a little bit obsessed with being on time during this whole entire experience. While, that's what I get… because after our wonderful misadventures in Paris, it turned out that a lot of members of my group were having security problems which caused a train delay. Luckily, this was not the case for us, but either way several trains ended up getting stuck in the Chunnel (that's the Channel Tunnel between England and France underwater) so I had no choice but to take a nap aboard the train after all that worrying. Turns out we were an hour late that day, as were some of our travel companions.
All we had was theater class that day, we were discussing why everybody was not fond of “A Small Family Business” which we had just seen the last class day before. Compared with the acting delivery, set design, location, props and other elements of the plays that we had seen, it was still good, but it just was not the outstanding caliber that we had come to expect from the West End, which brings me rather nicely to this day.
As I said earlier, I had been sicker than a dog the whole weekend, and there was no way to refund the purchase price of those train tickets without exorbitant fees, so I decided to suck it up, I was going to France, dammit! So, it would only follow that I wanted to spend the whole week thereafter curled up in a blanket. But I couldn't. Not today. Because we decided that it was the only night we would be able to see Wicked, the musical. So, after class and purchasing some cold pills from the local Boots pharmacy, we decided to schlep over to the Apollo Victoria Theatre by bus. When we got there, I was doubly disappointed, because the lift platform up the front stairs was not working, so my friend had to go in and get somebody from the box office to come outside so they could talk to me. When I asked about “day tickets," they said there were none available. These are the tickets that you have to purchase the day of and they allow you really good discounted seats (great for students!) so the fiirst few rows of the house are full at every show. But then she said “Come to think of it , if you need a wheelchair, the accessible stalls are actually cheaper, and we do have those available!” I was so happy, because for £15 each (that's less than the price of dinner for 2), we were going to see a musical!
I don't know why, but I remember feeling so much better that night, and it was one of the best nights of the entire trip, even if it ended in me giggling maniacally. It was such a great performance, but I better stop before I start singing (because I will!) The sets and special effects were great, and they even had many of them that were suspended from the air. We shared ice cream as I sang along to every single thing, and I was just so happy because basically the musical is about being different and how that is okay, and I don't know why but I was happier than I had been on the entire trip previously. The West End shows end kind of late, but you would think there would still be some restaurants open for theatergoers afterward. But alas, this is not America! So we ended up eating at one of the most American places I can think of: a 24-hour McDonald's. My first Double Cheeseburger that I had had in about 10 years, and I was still singing all the way home!
"It's time to try
Defying gravity
I think I'll try
Defying gravity
Kiss me goodbye
I'm defying gravity
And you won't bring me down"
Defying gravity
I think I'll try
Defying gravity
Kiss me goodbye
I'm defying gravity
And you won't bring me down"
(Image: Me with outstretched arms, grinning widely. You can see the billboard for "Wicked" at the entrance to the Apollo Victoria Theatre in the background.)
(Image: A map graphic, presumably of Oz complete with brown, blue green, and neon green lighting. This could be seen as part of the set design projected behind the stage.)
Curious, very curious.....
Trigger warning: description of sensory meltdown, cultural appropriation?, ableism
OK, so I just looked back at my journals and realized that this is slightly out of order, but I wanted to take a moment and continue this. Shortly before some of the adventures described in the last few posts, our group had the opportunity to see the second of five shows together, based on the well acclaimed children's book "The Curious Incident of the Dog in the Night-Time." Here is the part where I admit that I never actually read the book, so I had no idea what it was actually about (braces for audience heckling!) As the title may suggest, it is about the main character, Christopher, who has Asperger's and wants to solve the mystery of who stabbed his neighbor's dog.
Now before we even started the show, my friend and traveling companion wasted no time imparting on me how problematic it was that someone that had absolutely no experience with anybody who was Autistic, or on the spectrum in any way had even tried to write this play. That being said, I was pretty skeptical before watching the entire performance.
But I will agree that it was probably the best or second-best show out of 6 that I saw while there. Which led me to wonder if anyone's personal experiences were consulted during the staging of this play. From the backgrounds which had a lot to do with changing lighting effects, and simple set structures that could be repurposed in multiple ways, I actually felt like I was inside some of the experiences of a dear friend of mine as they were recounted firsthand. It was fascinating, intriguing, and at the same time incredibly disheartening when you realize as a viewer that this is still the way people are treated if society does not understand the way they communicate. There were several scenes in which the main character experienced sensory overload, which I felt was a parallel for what the audience was experiencing. I am not Autistic, but I do have a tendency to jump at loud noises or sudden changes in focus. And I have issues with sudden flashing of strobe lights. All of these things were used throughout the performance. So while I still agree that somehow this play re-created the experiences accurately and very well (at least for a certain group of people), and I say bravo to the cast and set designers for inhabiting that role, I couldn't help but sitting there thinking that my friend, who could be the first authority on how to accurately critique this performance, would have experienced such a sensory meltdown, that he would not have been able to sit through the show, or at the very least, may have been overwhelmed by the environment.
I will say that I really enjoyed this production, but it got me thinking about what is the paradox that occurs every time people's access needs conflict, which in a way, is a metaphor for this entire study abroad experience. I won't say it's for everyone, by any means, but if it works for you, this production is definitely worth the watch, if not for the questions it will bring about.
Until next time…
Sunday, August 23, 2015
A bill of rights as an autonomous disabled person
So let's take a trip to the present here for a little bit...
Many of you may know that I am now in the interesting phase of entering the real world, let alone now finally dealing with the systems in a city where I have completed my undergraduate career. For a person who has needed assistance from other people for most of my life, you would think I would have some idea how to do this process or at least how to get started. In the past, I have always been respected as a crucial member of a team that planned my care as soon as and possibly even before it was appropriate. As such, I am used to meeting with and coordinating with many different people so that I can go about my day as I need to. While I realize that this might be somewhat of a unique situation, I still amazed at the amount of stereotyping that goes into creating policies for people like myself, who wish to self direct their day but need assistance doing so. At this point I am trying to take the steps to have the most independent option possible but there are a lot of things that I found out do not go without saying in terms of how people interact with me every day.
Many of you may know that I am now in the interesting phase of entering the real world, let alone now finally dealing with the systems in a city where I have completed my undergraduate career. For a person who has needed assistance from other people for most of my life, you would think I would have some idea how to do this process or at least how to get started. In the past, I have always been respected as a crucial member of a team that planned my care as soon as and possibly even before it was appropriate. As such, I am used to meeting with and coordinating with many different people so that I can go about my day as I need to. While I realize that this might be somewhat of a unique situation, I still amazed at the amount of stereotyping that goes into creating policies for people like myself, who wish to self direct their day but need assistance doing so. At this point I am trying to take the steps to have the most independent option possible but there are a lot of things that I found out do not go without saying in terms of how people interact with me every day.
- None of my aides or caregivers need to be my parent, as much as they want to be.
- Even if someone does not agree with a decision that a disabled person is making, it doesn't mean that it's not their choice.
- While I realize there may be limitations on payment and billing of certain assistance services, this does not mean I cannot come and go as I please. My community involvement should not be restricted in any way because of the help I need. (I know there are people for whom this is not the case but if it is relatively simple for the person to leave their home, there's no reason why they should be restricted from doing so.)
- Somebody assisting another person doesn't need to add commentary on every individual task unless it's asked for.
- I have the right and legal authority to be a part of planning my own support. I should be treated as if I know what's best for me. I don't have a background in law but I know there are many of us who learn regulations out of necessity.
- I am a pretty laid back person in general, and I am pretty easy to get along with, so people are often surprised when I stand up for myself in terms of what I need. This needs to be commonplace and not unexpected.
- If I say that a solution does not work for me, people need to listen to that and respect that.
I don't understand why consumer directed support is not a universal thing and why it is so hard to set up. You'd think it would be the easiest thing to access as an alternative to a nursing facility. But somehow the people who know what they're doing always end up working for large companies that don't acually have a good reputation for client services, instead of allowing the client access to a large network of people with the credentials they need to help them. While I think it should definitely be considered as an option, it is definitely not the only option to go through an outside entity for management support as my personal experience and the experiences of many of my friends can attest to. Not only is the quality of client services severely impacted, but also the quality of the environment for the people who work there. Don't get me wrong, I've had some fantastic experiences, but largely I find that if you don't live with some type of disability you don't understand what it's like if somebody
forgets about you one day, or says there's nothing they can do for you. Now, imagine what that's like every day on and off for a month. This is not your Excel spreadsheet, these are our lives.
....and it's time we took them back!
Pastries, subways, and cab drivers. Or, adventures in Paris
I mentioned earlier that when I first returned from London, it was very hard for me to sum up the experiences I had in this part of the world. Nearly everybody I saw asked me “how was it?” “what was it like?”, or “what was your favorite part?” It took me a while to come up with experiences or funny stories that I could tell everyone about In a coherent set of words. If I talked to you, these adventures were probably among the stories I told you, so here goes, the legendary weekend trip to Paris…
As consistent with the theme here, we were once again left running for the mode of transportation, this time, the Eurostar train, this time by a communication failure not unlike one of those Bad Lip Reading videos, that was completely my fault. If you have not seen these, I think they are hilarious due to the sheer fact that these situations happened many times, most of which were incredibly hilarious. This one, however, was not, and led to me having a meltdown in the train station as they were calling our train for final boarding when we arrived. That aside, however, both of us calmed down when we were able to eat the croissants provided with the complimentary breakfast! Little did I know that this was only the first of the adventures to come.....
When we got to the Gare du Nord (the Northern Railroad Station for you non-francophones), I suggested we proceed to the information kiosk. I had the address and the reservation of the place we were going, but I was unable to get through to them on the phone beforehand as my international minutes did not work in the UK. So, I went to the ticket agent and asked her, in French, to please call the youth hostel so that I could confirm disability accommodations. As it turns out, there was no place on their website to specify this or make any comments. So the agent called them and she comes back asking me if I can walk upstairs at all, because there is somebody already staying in the accessible room. I said no, but then I thought the easiest thing to do would just be to sort this out when we get there, because of course no one knows what to do with a Deaf person and a person in a wheelchair when they see us together. So I asked for advice on the nearest transit location and we ended up waiting for about 45 min. extra than we were supposed to after finally finding the place when getting lost coming out of the station. At this point, both of us were so tired and hungry that we decided screw it, we're taking a cab.
So my friend and the cab driver folded up the chair just fine, but then the cab driver seemed concerned that my friend could not put me in the car somehow. He then decided that he and his brother, who was there for some reason, could do it better. So both of them picked me up and tried to shove me in the car fireman style without asking. Thankfully, I knew enough to tell them to stop, and tried to explain a better way to do it, or to just leave me alone, and let my friend do the job, but they wouldn't listen, and kept trying to force my legs in the back of the car, after I explained that they didn't bend so easily. After about the fifth time of trying to do this, they finally listened and let my friend put me in the car the easy way, all the time the meter was going up! At least I knew now that I could never be kidnapped easily, at least not in France.
When we got to the hostel, I thought, things had to start getting better. Firstst of all, these people didn't believe that it was even possible that I could have made all the reservations and all the card information etc. because I was in a wheelchair, so they kept trying to talk to my friend, who, of course, could not hear them well. The manager was mad because he had to keep opening the side entrance for me to get in and out, and he was also mad because he insisted on kicking two guests that weren't disabled out of our room, even though we said we didn't mind sharing, because it was a four-person room. Keep in mind that this entire time, I was speaking French like a duck with a nose plug.
After this was all sorted, as the Brits would say, the front desk was very nice to us. I wish I got the woman's name that worked there because she was such a pleasure to interact with and she was so helpful to both of us. She said that there were many options for transportation around there and told us where we could go and what to buy when we got there. The most interesting thing was that she complimented my fluency in French and said I spoke with a British accent, which is funny because out of respect for the culture, I had to try so hard not to do a British accent when I was there, but I quite enjoy doing it at home :-) This woman moved between French and English easily when talking to my friend, and when she noticed we were signing, she tried to teach us a few signs in LSF because she said she knew someone with a Deaf baby.
I remember when she informed us that the hostel Wi-Fi was not working (pronounced with a short I in French, that was fun to say!) So not only did we have phones that could not receive data and the minutes didn't work, we had no Internet either! What did people do before technology? I realized that I knew the general area my friends were staying in, but I didn't even have the address to snail mail them a letter. We had not seen anyone we knew all day, and could not contact the people we were supposed to be meeting up with to let them know we were okay. So, as we ventured out to try to find an Internet shop, which we discovered were all closed because France and nap time, we decided that we were going to eat pastries for dinner, so gosh darn it we did, and they were some of the best things I have ever eaten. Mine had pear flavored liqueur in it, and my friend got a lemon meringue. After the day we'd had, that was the best thing we could've asked for!
Instead of venturing out in the rain again, we decided to stay in and catch up on episodes of Switched at Birth that I had downloaded on my computer. There was so much to be said for the comforts of home at a time like that.
The next day, I knew that the group was going to meet at the Louvre on free day. So I decided that if we had any hope of salvaging this adventure, our best bet was to go there. After an interesting walk to find transportation that was not underground, we finally made it there. We realized that our group was nowhere to be found, and that it wasn't free day after all. So of course, what is the first thing we do? We have to go looking for internet. After looking at a few rooms and paintings, we find out that there is an apple store in the atrium of the Louvre. So here we are, we could be anywhere in the world seeing things that people have never seen, and we're in an apple store trying to use the internet.
So I was finally able to connect with my friend and he said everyone was meeting up at Notre Dame for the mass later that evening. I checked the transit schedule and realized that it was only about a 15 minute bus ride to L'Institut National des Jeunes Sourdes - AKA St. Jacques. This was the school where the founder of American Deaf culture, Laurent Clerc, went to school and it ws the first school where manual sign language was used as the primary method of instruction for deaf students. As some European travelers may know, a lot of the streets in France have circular intersections with different branches. So when I kept asking for directions and the guy would say 'go straight' I didn't know what he meant because there were too many options. We had no GPS but I found out later that we were only 500 yards from the school itself but we were so lost and I was so upset that we decided not to continue.
We ended up making our way back to Notre Dame to meet up with the rest of our group. By the end of this ordeal I was so happy to see people I actually knew besides my friend. They didn't know we had made it there and wanted to know where we'd been the entire time. They expained that they could use my interpretation skills to order food so we decided to go to a meal together where I could tell everyone what they were reading on the menu. Like any true traveler would I ordered des cuisses de grenouille (that's frog legs for you Americans). It's true, they do taste just like chicken. Maybe I'm weird but I love foie gras which is paté made out of goose liver, and you can spread it on toast - it's amazing!
We ended up cruising the markets and the bookstores, including a really well known one called Shakespeare and Company. While some people opted to climb the Eiffel Tower, I was obviously not that interested as the elevator only goes to the second deck. So instead, another group member had the idea to go to L'Arc de Trionphe on the Métro, which is awful for wheelchair users. So once again this ended up being an adventure of carrying me down a flight of stairs. I was able to recruit a very good looking French passer-by and explain to him how to lift the wheelchair and help us down. While there, my friend told us that the Eiffel Tower lights up every night at midnight, so we decided to stay up and watch the sparkle.
The next morning we made our way back on the Eurostar on our own, in just enough time to have our classmates to have security problems and have our train get stuck in the chunnel. So for all this concern about being on time, there was nothing I could do about the 2 hour delay back to class except to take a nap. Somehow our professor did not seem surprised.
Until tomorrow...
(Image: Two pastries in a box. The one on the left has lemon meringue with circles of whipped cream and designs on the top. The one on the right is a pear tart with what looks like a cursive letter 'H' on top.)
(Image: A view of the palace outside of the Louvre on a rainy day. A palace is visible along with a ferris wheel on a slight angle.)
As consistent with the theme here, we were once again left running for the mode of transportation, this time, the Eurostar train, this time by a communication failure not unlike one of those Bad Lip Reading videos, that was completely my fault. If you have not seen these, I think they are hilarious due to the sheer fact that these situations happened many times, most of which were incredibly hilarious. This one, however, was not, and led to me having a meltdown in the train station as they were calling our train for final boarding when we arrived. That aside, however, both of us calmed down when we were able to eat the croissants provided with the complimentary breakfast! Little did I know that this was only the first of the adventures to come.....
When we got to the Gare du Nord (the Northern Railroad Station for you non-francophones), I suggested we proceed to the information kiosk. I had the address and the reservation of the place we were going, but I was unable to get through to them on the phone beforehand as my international minutes did not work in the UK. So, I went to the ticket agent and asked her, in French, to please call the youth hostel so that I could confirm disability accommodations. As it turns out, there was no place on their website to specify this or make any comments. So the agent called them and she comes back asking me if I can walk upstairs at all, because there is somebody already staying in the accessible room. I said no, but then I thought the easiest thing to do would just be to sort this out when we get there, because of course no one knows what to do with a Deaf person and a person in a wheelchair when they see us together. So I asked for advice on the nearest transit location and we ended up waiting for about 45 min. extra than we were supposed to after finally finding the place when getting lost coming out of the station. At this point, both of us were so tired and hungry that we decided screw it, we're taking a cab.
So my friend and the cab driver folded up the chair just fine, but then the cab driver seemed concerned that my friend could not put me in the car somehow. He then decided that he and his brother, who was there for some reason, could do it better. So both of them picked me up and tried to shove me in the car fireman style without asking. Thankfully, I knew enough to tell them to stop, and tried to explain a better way to do it, or to just leave me alone, and let my friend do the job, but they wouldn't listen, and kept trying to force my legs in the back of the car, after I explained that they didn't bend so easily. After about the fifth time of trying to do this, they finally listened and let my friend put me in the car the easy way, all the time the meter was going up! At least I knew now that I could never be kidnapped easily, at least not in France.
When we got to the hostel, I thought, things had to start getting better. Firstst of all, these people didn't believe that it was even possible that I could have made all the reservations and all the card information etc. because I was in a wheelchair, so they kept trying to talk to my friend, who, of course, could not hear them well. The manager was mad because he had to keep opening the side entrance for me to get in and out, and he was also mad because he insisted on kicking two guests that weren't disabled out of our room, even though we said we didn't mind sharing, because it was a four-person room. Keep in mind that this entire time, I was speaking French like a duck with a nose plug.
After this was all sorted, as the Brits would say, the front desk was very nice to us. I wish I got the woman's name that worked there because she was such a pleasure to interact with and she was so helpful to both of us. She said that there were many options for transportation around there and told us where we could go and what to buy when we got there. The most interesting thing was that she complimented my fluency in French and said I spoke with a British accent, which is funny because out of respect for the culture, I had to try so hard not to do a British accent when I was there, but I quite enjoy doing it at home :-) This woman moved between French and English easily when talking to my friend, and when she noticed we were signing, she tried to teach us a few signs in LSF because she said she knew someone with a Deaf baby.
I remember when she informed us that the hostel Wi-Fi was not working (pronounced with a short I in French, that was fun to say!) So not only did we have phones that could not receive data and the minutes didn't work, we had no Internet either! What did people do before technology? I realized that I knew the general area my friends were staying in, but I didn't even have the address to snail mail them a letter. We had not seen anyone we knew all day, and could not contact the people we were supposed to be meeting up with to let them know we were okay. So, as we ventured out to try to find an Internet shop, which we discovered were all closed because France and nap time, we decided that we were going to eat pastries for dinner, so gosh darn it we did, and they were some of the best things I have ever eaten. Mine had pear flavored liqueur in it, and my friend got a lemon meringue. After the day we'd had, that was the best thing we could've asked for!
Instead of venturing out in the rain again, we decided to stay in and catch up on episodes of Switched at Birth that I had downloaded on my computer. There was so much to be said for the comforts of home at a time like that.
The next day, I knew that the group was going to meet at the Louvre on free day. So I decided that if we had any hope of salvaging this adventure, our best bet was to go there. After an interesting walk to find transportation that was not underground, we finally made it there. We realized that our group was nowhere to be found, and that it wasn't free day after all. So of course, what is the first thing we do? We have to go looking for internet. After looking at a few rooms and paintings, we find out that there is an apple store in the atrium of the Louvre. So here we are, we could be anywhere in the world seeing things that people have never seen, and we're in an apple store trying to use the internet.
So I was finally able to connect with my friend and he said everyone was meeting up at Notre Dame for the mass later that evening. I checked the transit schedule and realized that it was only about a 15 minute bus ride to L'Institut National des Jeunes Sourdes - AKA St. Jacques. This was the school where the founder of American Deaf culture, Laurent Clerc, went to school and it ws the first school where manual sign language was used as the primary method of instruction for deaf students. As some European travelers may know, a lot of the streets in France have circular intersections with different branches. So when I kept asking for directions and the guy would say 'go straight' I didn't know what he meant because there were too many options. We had no GPS but I found out later that we were only 500 yards from the school itself but we were so lost and I was so upset that we decided not to continue.
We ended up making our way back to Notre Dame to meet up with the rest of our group. By the end of this ordeal I was so happy to see people I actually knew besides my friend. They didn't know we had made it there and wanted to know where we'd been the entire time. They expained that they could use my interpretation skills to order food so we decided to go to a meal together where I could tell everyone what they were reading on the menu. Like any true traveler would I ordered des cuisses de grenouille (that's frog legs for you Americans). It's true, they do taste just like chicken. Maybe I'm weird but I love foie gras which is paté made out of goose liver, and you can spread it on toast - it's amazing!
We ended up cruising the markets and the bookstores, including a really well known one called Shakespeare and Company. While some people opted to climb the Eiffel Tower, I was obviously not that interested as the elevator only goes to the second deck. So instead, another group member had the idea to go to L'Arc de Trionphe on the Métro, which is awful for wheelchair users. So once again this ended up being an adventure of carrying me down a flight of stairs. I was able to recruit a very good looking French passer-by and explain to him how to lift the wheelchair and help us down. While there, my friend told us that the Eiffel Tower lights up every night at midnight, so we decided to stay up and watch the sparkle.
The next morning we made our way back on the Eurostar on our own, in just enough time to have our classmates to have security problems and have our train get stuck in the chunnel. So for all this concern about being on time, there was nothing I could do about the 2 hour delay back to class except to take a nap. Somehow our professor did not seem surprised.
Until tomorrow...
(Image: Me sitting in front of the Arc de Triomphe with my arm outstretched like I'm trying to be Vanna White. The picture was taken at night and I am sitting in my chair wearing a striped tank top and shorts)
(Image: Two pastries in a box. The one on the left has lemon meringue with circles of whipped cream and designs on the top. The one on the right is a pear tart with what looks like a cursive letter 'H' on top.)
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