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…
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