Sunday, December 6, 2015

To my wonderful roommates

A lot of people often ask me why I live the way I do. I've gotten into this before. While many other students and recent graduates are offering up spare rooms and synergizing their resources, I've  decided that it's time for me to live alone, again. I suppose this is never really true in a manner of speaking, given my situation where I receive support, at least not at this point in time. I don't exactly know what that says about me, or the society I've grown up in, but I have learned quite a few things over the past year and a half. and there are some things I'd like to say.

To the people who didn't sign up for this: thank you
For not running away screaming
For making me laugh
For putting up with my drama
For letting strangers into your space
For growing up quickly
For blasting music too loud
For being cool when I was not
Or when you didn't have to be
For never feeling sorry for me
Because shit happens
At any given moment
Because I was never one of those people
I was one of you
For all  the parties, dance parties, accomplishments.
Even if you didn't understand what it meant
It meant something. You got that
For that I am grateful
Forever



 You didn't sign up for this. I know that.  And I know you will probably never choose to have an experience like that ever again, you don't have to, I don't blame you. But you did. And even though  you are relieved because  there are no more emergencies, no  more accidents, no more weirdos being locked out, no more rescuing me from buses, no more worrying about me, I hope that each one of you took something from that year.  Because I  certainly did.  You can be young, you can  be you, and you should be.  And every year, it gets harder for me to want to share space with people. Because it's weird, it's complicated. No one WANTS  to do that.  You are the people that understand that I  sometimes feel like a baby in an old person's body.  You restored my faith in humanity, and, when I'm ready,  I hope I can to share life with awesome individuals like you. Stay weird! <3 <3

Let's talk about accessible bathrooms

     OK, so this post started out as a joke that wasn't really supposed to happen but some other perspectives on this issue got me thinking.
When I traveled to Europe, I knew that there would be many accessibility challenges due to old buildings and various architectural structures on the streets throughout different places. But London did have one difference which proved to be quite useful, albeit quite interesting as well–accessible bathrooms.
      That is not to say that we don't have them here, because we do.  But there are a few differences that I would like to try to illustrate.
     The UK has something called the National Key Scheme and the RADAR Key. This is a national program that creates  standards for separate accessible bathrooms that are cleaned and locked and can only be opened by people who have this key, or business managers if they have one. Most of the facilities are very nice and have standard features different from what we would see here in the US. For example, most toilets have at least one armrest that folds down on the side, in addition to a railing. There is also a separate, lower sink and an emergency cord to pull if you need help. These facilities, while not available everywhere, ensure access to a variety of people for a one time fee. Another difference is that, at least in the UK, or other places throughout Europe, the disabled toilet is separated from the men's and women's toilet, similar to how we might have a family restroom here, eliminating the need for stalls or small spaces.
      This compact design  can also create some issues, though. For a person like myself, who may need extra room to stand up, or for a person to help them, the lowered sink on the wall always hit me in the knees, and the railing was not usually at the right angle to be of any assistance. So, it got me thinking about how different people's needs can really clash. At home and in the community, I would usually use a larger chair, which could be accommodated by this space, but could not usually fit in the appropriate place at home. What about folks whose mobility devices were higher or lower, or needed more space for a lift of some kind.  Areas with a  larger space may be harder to access for people who need everything to be within arms reach. What about people who require open concept? Or need tactile identifiers? These are still often things that are not readily available. A friend of mine got me thinking about this and I read an article about Australia (and now the UK)  having a similar program. Then, I had to explain why this environment would be confusing for me, while it might work for her.  You can find the article here. More information about the NKS and what it looks like can also be found here.

 What does everyone think?  Why don't we have a similar distinction in the US?  Feel free to leave a comment about some of your experiences!


(Image description: A close up shot of a Radar toilet in Hyde Park, London. The back of the tank is visible as well as an adaptive flush handle with a round platform so I can flush with my elbow. A part of a black grab bar is also visible to the right, raised to be flush with the wall. )

The letter, and what it says about my thoughts on San Bernardino

     I always struggle with whether or not to comment on current events, because usually by the time I get around to it, it's no longer relevant or may not deserve people's attention. As many of you know, I have a very big mouth, but rarely do I actually open it in the interests of seeing how these events effect the world in a journalistic way. I know that I'm not always going to agree with everything that crosses my feed, but personally, for me that doesn't mean I have to block out that information, as much as my visceral reaction may want me to. I think it's what makes this media different from many others.
     In light of recent events in San Bernardino, I saw a friend say something to the effect of that if everyone is now talking about equality, this is not the kind of equality that is meant, by now pteontially including disabled people in the list of victims of mass violence. But, it couldn't help being my first thought when I heard about what happened, it was like “Oh look, there's another one, I guess they're going to shoot us now, too.” When reading follow-up stories about this, it is unclear as of yet to me if any of the victims were actually disabled, or if they just worked in this center that assisted disabled people. Please correct me if I'm wrong.
    And then, I thought back to this letter that circulated on social media a couple years ago from an angry neighbor of a woman with an autistic grandson.  (Trigger warning, there are a lot of ableist slurs and mention of violence and euthanasia here). And that's when I realized that things like this are no longer specified to a particular group, but are becoming more widespread toward other minority groups (in this case, Muslims), as they have been throughout various periods in history. It is not just about  this letter, it is about what has been said back-and-forth on social media for months now. And let me be the first to say I don't really know what to make of this.  I find myself to be a person interested in learning  about all backgrounds and generally tolerant of  opposing viewpoints.
     But the thing that makes our country different is that these opinions are allowed to exist, whether I believe in them or not. What the community chooses  to do with that as a whole  is both a collective and an individual decision. It's only sad that harm to others must happen before this decision is reached. While I have decided that I will not own a gun, if for nothing else than the practical reasons of not being steady enough to shoot one, that does not allow me to put that opinion on others. The existence of differences should allow us to learn from each other.  I was raised in a place where there is value to things like hunting and culture when practiced properly and safely. At the same time, traveling to Britain  where the civilian population is not permitted to own guns except for very special circumstances was a real eye-opener, because most felt safe enough that they didn't need them. I realize that I may very well have said things here that contradict myself, and that's okay. I fully expect backlash, but that does not mean that I need to engage with any or all of it. I am still figuring this out, as is most everyone in America right now.
     When it came out  in the Paris attacks that some were targeting the disabled first, my thoughts went back and forth between “How dare they target us specifically!” and “What does that say about us as a population if they specifically don't target us?” I know that's awful, as I don't like to think about that in terms of any human being, but it's something I think about a lot when I go out at night. People are concerned about me, because it's dark and I'm in a wheelchair, thinking that something will happen to me just because of this, and yet, sometimes, this is countered by me thinking that “Oh, no, why would anyone mess with the disabled person?” sometimes giving me a sense of false confidence, although I know intuitively that  I am strong in the dangerous situation for other reasons. But I realize it all comes down to other people's understandings of me and of each other. And that every person who is different in some way could have gotten a letter like the one above.  And that a lot of people have in the past few months. Think about that the next time you see a post on social media. I wish that people would use these freedoms that we have to try and understand each other. Then maybe there would be more love and fewer shootings in this world.

Thursday, October 1, 2015

Two women and their computers

      Before she was world-famous for typing words like  “cattywampus” and “onomatopoeia,” this keyboard magician was typing Shakespeare, which is a lot harder, I think!

 Sure, I've been trying to acclimate you to what were the sights and sounds of London, but now imagine taking it in  wearing a giant pair of old-school headphones, and what I could only describe as “a Baby Bjorn for your laptop” to someone the other day. Oh, and not to mention while typing almost 300 words per minute. Add in flocks of staring tourists wondering “what the hell is that thing???” and you start to get the idea.
      Well, that's exactly what two lovely ladies were doing while accompanying us on each of our class activities. And both of them were hilarious and a sincere  pleasure to travel with.
        You see, they were providing what's known as real-time captioning (RTC or CART) for my awesome friend who was also in our traveling group. She is deaf and using these transcripts allows her to  read  exactly what is going on during the lesson as it happens, not to mention helping the rest of us out when we were a little behind as well!
      You might have thought that stenography was only for transcripts in court or for journalists. But no, my friends, it is actually a very diverse job. One day you could be captioning a university lecture , the next  you could  be doing closed-captions for your favorite TV program, or hey, if you're so lucky, you might get paid to travel! One of the ladies who was with us actually specializes in captioning  live sports broadcasts. But seriously, how cool would that be if you're a sports fan?!
     But, come on, let's be real here, you're  on the other side of the screen going THAT'S SO COOL! CAN I TOUCH IT? HOW DOES IT WORK? WHAT HAPPENS IF I PUSH THIS BUTTON? HOW ON EARTH DO YOU TYPE THAT FAST? And  most importantly, IF I SAY A BAD WORD, DO YOU REALLY HAVE TO TYPE THAT, TOO??  (most of the time, the answer is yes.) But seriously for as many questions  as I get about all the cool stuff my wheelchair does, I can only imagine these guys get more. And I'm sure it never gets old. At all. :P  So, allow me to explain--
     The stenotype machine  is composed of 6 keys that, when pressed alone or in combination produce a different combination of phonetic sounds, so you're literally  typing what you hear, not the actual letters  and such, which allows the person to type faster. Many common words and spellings are programmed into the software, just like Siri, and if the captioner  knows them ahead of time, people's names and commonly used terms on the subject will also magically appear. In the classroom, the machine is connected to an overhead projector that has its own screen, so that people can see what is being transcribed. In our class, my friend also had her own laptop so that she could see it, but everyone else didn't have to if they didn't want to.
      My big question was “ Okay, I know it will be fine in the classroom, but what are  they going to do when we go on all those walks and stuff? What about the equipment?”  I know this because in my previous work I often had to confirm and arrange equipment for captioning at some of our events. Well, my questions were soon answered. One of the captioners  had invented this device that looked like a lap tray with a harness that she could wear on her shoulders and keep the stenotype  machine inside it, so that my friend (and all the rest of us!) could read along when we couldn't  understand Professor Fosdal in the very soft-spoken but gruff voice of a proper English gentleman:

"America...........class conflict.............immigration.......gentrification........WWII"

 became something we could actually understand because the captioner had noise canceling headphones and a wireless microphone on the professor.  And it also kept the  other professor from rambling once he knew that everything had to be written down. It was kind of funny. As for me, I was just happy I had won the honor of having my name programmed in the machine. That's kind of a big deal. Usually, when someone in class made a comment, it just said “student 1” or “audience” or something like that. But apparently I talked so much in class or they just knew that she liked me, so I guess it was okay :-).
      All  jokes aside, it just made me happy that there were multiple forms of access on this trip. As much as I would complain about the physical access to somewhere, it was nice to also have to think of someone else. As she is the one who encouraged me to pursue this entire experience when I thought that applying to study abroad would be too overwhelming for “someone like me,” I wanted to think about her and make sure she had everything she needed as well. The nice thing about this was that when they asked about theater accessibility for captioning, they also asked where the wheelchair seats were as well. It was kind of nice not to be the only one, one of several, in fact. But, it was amazing to have an advocate and some understanding in these ladies. And besides that, they were just   fun  to talk to, very kind, and a wonderful presence on our trip.  To the two of you, I am still in awe of the speed and precision with which you did your jobs and your ability to keep up with all of us, both physically and mentally. It  is still magical to see my words appear on the screen as they are coming out of my mouth (and not from my own doing). I wanted to acknowledge you not only for the work you do but for the unique situation that you put yourselves into while traveling with us and how it changed our whole experience. I'm sure I'm not the only one who would agree. Thank you.


Thanks to my lovely friend Jessie for this photo! You're the best! Image: a view of the main stage of “A  Small Family Business” with the exterior of a red brick two-story house. In the foreground is a darkened room with the screen of a laptop computer on the right side. It says:
>>MALE SPEAKER: Oh, my God, Harriet, don't open the
>>JACK: Desmond!
(Applause)
(Intermission)
(End of Act 1)

   

Wednesday, September 30, 2015

Planes, trains, and automobiles (or buses, buses, and more buses, as it were!)

      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!

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?

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!)


 (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!

"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"


(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




Hey there folks, it's been a little while.

      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.

  • 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: 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.)


(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.)

Thursday, August 20, 2015

“A Small Family Business”… and a cold!

      It seems kind of odd to take a minute now and think back about how you, as an American, would spend the Fourth of July in a place like London. Of course, we were supposed to have many interesting adventures like a tour  of the National Theatre, but due to renovations, this was canceled, so we spent the day doing what any self- respecting tourist would do–shopping!
      The only thing  of note about this day was the fact that I had a splitting headache and would fall asleep once again on my second trip to one of the world's biggest tourist attractions, the London Eye. Because of access passes, I was able to bring my lovely friend along for  a discount, and  thankfully she only spent about half the time making fun of me for falling asleep. (Yes, mom and dad, the traveling narcolepsy strikes again!) I do remember being awake for the picture, but it didn't turn out well.
      We had a nice dinner together and then we all had an assignment  that night. “A Small Family Business” was a very humorous play about a family that gets caught up in its own lies about money laundering and what happens after that. Though after seeing such stunning shows  with spectacular special effects, this play usually ranked as everyone's least favorite, even though I seem to recall it won  an Olivier award (for you Americans, that's like the Tony award). I knew at this point I was  struggling to pay attention to things such as set design and delivery of acting, when of course I ended up sitting right next to the professor. A couple weeks prior, they told us that about half of us would get sick because we weren't used to the bacteria in the food and water. As everyone else was interested in snacks during the intermission, I was interested in not sneezing on the professor or the actors. Lo and behold, for me, that day was today. But, I had no time to rest, for I had a  journal due that night, as that weekend was the predetermined adventure in Paris. I was sick as a dog, but I'd be damned if I had to get a refund  on those tickets! How the hell we were going to pull that off, I had no idea…

 Stay tuned for the adventures that followed in my next post!

Do you ever wonder what a water closet smells like? Or Hampton Court

     Our next adventure saw us running for the train as usual, this time in what would be one of the creepiest stations at night, because pigeons could fly in  from the ceiling. Victoria station was surrounded by construction detours and left us with minutes to spare. All I remember was yelling “run Forrest, run.” We didn't have to find an alternative this time.
      And so, we were on our way to the lovely little vacation palace of Hampton Court.  After being built, it was gifted to the wealthy landowner Sir Thomas Wolsey, who then got in a fight with  Henry VIII, who, of course, was mad that the church would not give him a divorce, and anyone who disagreed with him fell from favor, including Wolsey himself, later. I can't remember how much of the history went after that, but I do remember  that you could see several different eras of architecture within the palace walls. One really cool thing I remember is that the Hampton Court kitchen was among the first to develop some kind of refrigeration system for the meat, thus enabling it to be kept longer and could serve larger and more elaborate banquets in the dining hall. I remember something like an advertisement for a 100 course meal that had once been served there.
      Hampton Court  itself was known for the architecture of the Tudor period, which included a lot of wood paneling as well as gold leaf and gold plating on the walls and ceilings. This was also the era of frescoes to be painted on the ceiling, some of which usually involved a lot of breasts as was aptly noted by our instructor.  One cool thing about the palace was that I had to take elevators which allowed  us to access certain back corners of the palace that our classmates didn't get to see. I remember one of them had many spears on the wall and a weapon that looked like some kind of club spikes coming out of it. Another interesting thing is that spikes were installed out of the corners of the stone archways and in certain areas to prevent vagrants or homeless people from sitting or sleeping there.   Apparently you did not want to mess with the Queen.  But seriously, the King's quarters and the Queen's quarters  had some of the most ornate rooms I have ever seen. I remember that the room  they had an audience with you in was based on your importance, so the more important you were, the more sitting rooms you got to see.  My favorite room  was a room with sculptures made entirely out of cloth napkins. You probably think I'm weird, but it was awesome!
      We also were able to go outside  for  a tour of Queen Mary's Gardens.  I remember she liked to sculpt the hedges in interesting ways, some to look like mushrooms or Hershey's kisses.  At this point  we were outside, and all anyone could think about was ice cream and I remember everyone just laying on the lawn or under a tree, talking about life.  It was a great end to an  extremely runaround day.
      Oh, and in case you're wondering about the title of this post, you don't want  to know, it was horrible according to the scratch-and-sniff map they gave us at the end of the tour. I learned that's probably why people covered themselves in lavender and rose water!

Until tomorrow!

(Image: a stained-glass window  displaying various coats of arms  with primary colors in 10  different stained-glass panes)

 (Image: a gold plated  ceiling design from the Tudor era made in a geometric design  that appears to resemble rhombuses or flower petals.)

 (Image: a photo looking down the hall of one of the main portrait galleries, all showing women, presumably other royals. It is rumored that some of these halls are  haunted by the ghosts of the women in the paintings.)

Thursday, July 16, 2015

Don't believe me? Just watch: A day in Brighton

      Every time someone asks me to encapsulate an experience from this adventure, it's very hard to  think of just one, even after all this time. But when someone wants to know what the defining moment that I will never forget as long as I live or what I learned from this experience, I love to tell the story, so I'm looking forward to sharing it with all of you. Here goes!

      So,  after the trip detailed in the last post, fast-forward to Saturday. Oh, splendid, glorious Saturday! My time to sleep in, alas! Except… not this week. We have to get up at 6:30 AM to make the train for a required class trip to Brighton. Granted, it is a required class trip to the beach, but still.... And, it also happened to be my 21st birthday. So, I may or may not have told the universe to go do some unkind things that I regret....
      Anyway, where were we? Ah yes, the train. Better known as the bane of our transportation existence. We made it with literally minutes to spare, as usual, because of  construction traffic on buses. Somehow I remember talking to John about gentrification of smaller towns and people of different ethnicities on the way there, and somehow everyone magically knew it was my birthday, even though I had only mentioned it once in passing. I guess I have a little birdie to thank for that :-)
      Let's back up a little bit, to the 1st day of Mike's class. He mentions a tradition that all summer classes  must go on  a traditional seaside holiday  to the beach, and at least put their feet in the water. Of course, I  was all over it, because everybody knows I love swimming! But of course swimming and gimpiness does come with its complications. I really wanted to figure out a way to get down this beach and into the water. Anything for a dip in the pool.
      Come to find out that my friend I'm traveling with is not particularly fond of water. So this basically means I have to beg a group of strangers to help with this project. Okay, cool. So I go up to Mike after class on the class before this trip and I ask him about the layout of the beach. He says  “Of all the places on this trip, I think this is where you  will find it  the least accessible and have the most difficulty. He admitted that he might be staying closer to land as well. I asked him if he had seen any type of wheelchair or device that would allow me to cross the beach, and he said that he hadn't seen one in over 20 years of doing this. But, I knew he had faith in me. He said “If anyone can find a way to do this, you can."
      After getting to Brighton as a group, the first thing we did was  head directly for the seaside boardwalk, or promenade, as the British  call it. We were free to break for lunch, during which I informed several of the guys of my evil plan. And it was just evil enough, it worked. because I actually got two of them to agree. They helped carry me down the pebbly beach that my chair would never have made it across, and then stood me on a rock where I could put my feet in the water. I watched the tide coming in and out, and after several minutes realized my feet  were too cold, so I decided not to go swimming after all. I settled instead for  a beach chair where I could still let my feet touch if the tide came in far enough. All I really needed then was a margarita! I didn't get one, but you know, I'm okay with that, because some magical things happened next. Mike, who had been previously sitting carefully on  the top edge of the beach, decided to come down once he saw that I was down there. But my favorite moment of all was when John, one of the other professors had come down to join the rest of the group. He did not notice for several minutes that I was there with the rest of them. Upon seeing me there, he stood for a moment, looked at me, looked at my wheelchair, perched a couple hundred feet away, looked at me again, and his jaw dropped open for what  I swear was a solid 5 minutes.  
     “YOU'RE HERE?" he exclaimed, “I just can't believe it!”
      “I'm here,” I said.
      And just like that, all the hell I had gone through to go on that trip was worth it for that one single moment of victory and disbelief.  This was my moment, on my day, and nobody was going to take it away from me.
      The group gathered around for a group picture that I still display and will remember that moment. One small victory was encapsulated in that moment, forever.
     The next thing we did was tour the Royal Pavilion. You can't take pictures inside, but basically it looks like Orientalism meets the Victorian era on steroids. Heavily influenced by East Asian cultures, King George decided that he was going to decorate everything in the most gold plated, ornate, dome inspired designs  you could possibly imagine. Of all the places we went, this place, which was a kind of vacation home for Queen Victoria as I understand it, and was eventually left to the  people of Brighton to maintain, had some of the most  detailed and amazing artifacts that I have ever seen.
       After this, we were then free to roam about as we pleased. After exploring several neat little shops, we then headed  to explore a garden trail, I heard music coming from somewhere nearby and wanted to go investigate. It turns out they were celebrating some sort of armed forces appreciation day (it wasn't Veterans Day) and this old-school a cappella group was singing songs from the World War II  era, so we decided to hang out and listen. Then, suddenly, they started singing Amy Winehouse, a song I actually knew, and my friend serenaded me so badly you couldn't help but love it. To this day, every time "Valerie", is on the radio, I can't help but smile!
       We forced ourselves to break away, and we went to the pub where we heard some people *might*  be meeting at 4 o'clock. Lo and behold, there was Mike and most of the group. I settled in for about 20 min. of conversation, when, all of a sudden, one of the waiters comes over with an extremely confused look on his face.
      “Did someone order cake and ice cream?” he said,  entirely too conspicuously.
 I tried to hide behind the menu, but the whole entire pub started applauding and burst into song, some  even accompanied by the lyrics in ASL. Yes, it was entirely that corny, and yes, I loved every minute of it. I ate the entire molten chocolate fudge cake and ice cream and didn't share!  Then, one of the other members of the group presented me with a card signed by everyone. She said they were going to buy me a round, but they found out that I didn't like to drink that much. So I said I would try one thing. Somebody went and got me a glass of Pimm's, which kind of tastes like fruity ice tea mixed with wine, I'm not sure exactly what's in it, but I could never find it when I came home.  knowing me, the horrible college student, I only sipped on it. So thank you to the many of you who probably finished  that glass!
      At this point, everybody was hungry (except for me!) so we broke for dinner. I was exhausted and feeling homesick so I opted to get paninis that we ate on the train on the ride back with some people who wanted to leave early. Apparently I missed the real party! But I was so exhausted and ready to prepare for the week ahead. And even though I didn't appreciate it at the time, because I was missing family and friends back home, I realize now, as I sit here and look at the card on my wall signed by all of you,  that  that was and will continue to be one of the best birthdays I could ever ask for. So thank you, each and every one of you! Cheers!



 (Image:   our group after swimming at Brighton Beach. Most of us are in some kind of swimwear. We are all smiling and people are huddled around me, who is sitting in a striped  beach chair in a purple one-piece. The pebbles on the beach and various buildings on the beachfront are visible in the back of the photo.)


 (Image: Me, a white woman with shoulder length brown and purple hair, smiling. I am sitting in my wheelchair under a white umbrella holding a red fruity drink with a straw. The beachfront is visible in the background.)

(Image: Two men, one in a blue shirt and khaki shorts, and the other in a white shirt and black shorts are carrying me, in my purple swimsuit, and are about to put my feet in the water. One guy was also a member of our group is standing off to our right, looking like he is freezing as he has just come out of the water. Several other members of our group are sitting along the beach. The beach and the ocean are visible in most of the photo.)
    

Stratford

     Hello again folks!

      Now, we're getting to the really exciting part of the trip that I've been looking forward to writing about for quite a while.  I'm not exactly sure if it was  in chronological order, or close, but the 2nd week of our trip  started out with the only overnight excursion that we would take as a group, to Stratford-upon-Avon. For you history buffs, that's better known as the birthplace of Shakespeare. This is something that Peter, one of our instructors, referred to as Disney-fication, where the attractions themselves were made to look less realistic in the name of capitalism,  as of course would have been with a lot of major attractions in the area. In this case, this location was bought and curated by the same people who run Madame Tussauds wax museum, which is sufficiently  creepy enough in itself and not worth it for us to make the trip after viewing the displays in Warwick Castle, which I'll get to in a minute.
      The journey started off with us  missing the train by  about 10 minutes The good thing about this was that I found out once again how helpful the transportation staff would be, which is a recurring theme, unlike here in America where I usually have to deal with paratransit providers, or at least I used to. Thankfully, we were able to catch one that gave us only a couple hours delay and missed the tour of Mary Arden's farmhouse. One thing I do remember, though, when we switched trains, was that the conductor aboard the first train seemed to know this very friendly man who tried to approach us on the platform while he waited. Apparently he had some sort of intellectual  disability and he frequented the platform often. At this time, my friend was more concerned for my safety and tried to get in between us, but I was more concerned for my friend at the time.  He eventually  went on his way and we went on ours.
      A couple cups of tea and some gorgeous greenery  later, we had arrived. Our accommodations  were located in the community and were some of the quaintest little B&Bs I had ever seen.  it was really lovely.  The next thing we did was join the group for a walk about town, which involved talking about the architecture of not only Shakespeare's home, but many of the churches and parks  and schools in the area. We visited Shakespeare's grave site and discovered that many famous members of the family also lived nearby. After this walk through the simultaneously quaint and touristy town, we were free to explore on our own for a while.
      At this point,  some friends and I decided to go into a magic shop, I believe it was called the Creaky Cauldron. They were offended that we would ask if they were around  before Harry Potter, which it turns out they were, by a long shot.  Most of us spent the equivalent of $4.50 on butterbeer, which in my opinion was disgusting (only to be outdone by a local Ballard favorite a year later–one of the best things  I've ever tasted!).  After this, we  adjourned for dinner, and then one of the greatest shows ever-Henry IV part 1 as the Royal Shakespeare Company theater.
      Now of course, we knew that most people would give their front teeth to see the show we were about to see. Of course, I had had my fair share of Shakespeare (thanks  Gifted and IB English!) But this  was actually my first time studying it in college, so I was surprised how simple the crash course we got was in the class the day before. Granted, it was still enough to understand what was going on  on stage.
      This stage  was in the middle of stadium style circular seating  with a central platform and walkway on all 4 sides, which means that some of the cast  went directly  through the audience on their way to the stage, creating an incredibly unique viewing experience. I think most of us, though, were too busy looking at the incredibly handsome and talented Alex Hassell to care! ( am I right?)  Nevertheless, it was a fantastic show with fantastic acting and special effects, which I will remember the plot of more clearly once I have a chance to read the play again! :) It all has to do with becoming king, greed, cunning, and trickery, of course, oh, and a few witty one-liners thrown in, as any good Shakespeare play will do.
      Most of our group met together at a pub afterwards, which marked the 1st time that the group had helped me to ascend a flight of stairs in my wheelchair. I think the pub was called the Dirty Duck if I remember correctly.  This made me think that my last post is almost certainly out of order, but that's okay. The good news is I made it down safely and a good time was had by all!
      After a lovely breakfast at our B&Bs the next morning, the group headed to Warwick Castle, one of the oldest castle sites still standing, I believe it was built somewhere around  1186 if I remember correctly. That being said, this was probably the part of the trip that I was the most concerned about accessibility wise. There were many different types of attractions available including the launch of a flaming trebuchet, archery, birding, the dungeon of doom, which I didn't go into, and the main part of the castle which had all the rooms set up in period decoration with these creepy wax figures à la Madame Tussaud's  with recordings of the people talking about how the woman had cheated on her husband while eating little wax pastries, etc. There was also one about a bunch of men gambling if I remember correctly. And then this building had a lot of period armor and weapons, which was cool. I had a plan worked out that 2 guys in my group were willing to help me get up to the top of the castle tower, but my professor talked them out of it because he was too concerned about safety and me taking the risk, so instead there was some video footage taken for me, which, come to think of it I don't think I ever saw. While everybody was  busy climbing 27 flights, I hung out with the peacocks in the castle gardens, which was one of the most beautiful places I have ever seen. Many an iconic picture was taken here.
      And finally, as if we thought Peter was truly a man of all  trades already, what with being a professor, a published author,   a historian, a B&B owner, and a theater critic, we also learned that he was an acclaimed chef as well. When we came back from our day trip to his B&B, there was some of the most wonderful food I have ever  tasted in my entire life, only to tell us afterward that he actually had made most of the entire thing.  As if that weren't enough, while we were eating, we found out that our meal would be completed with Hal  (a.k.a. Alex as mentioned above). Turns out he was a friend of the family and was gracious enough to sit with us for over an hour. I can't remember most of the things he said *swoon*  but I do remember how he said he enjoys playing complex characters because he does not do any 2 performances of a show the same. He said every day he is still trying to figure out who Hal is, that's what keeps it  interesting.
      After lunch, everybody was brought back to the  coach, and us to the train, for the three-hour return trip to London, where the only eventful thing that happened was I had to be carried up a flight of stairs by a stranger because there was no actual disability assistance on-site to get us to the other side of the tracks, only by phone. Other than that, though, I can say without a doubt that the people in Stratford were lovely, and that you are exhausted from reading this post! So until next time, my friends!
   


(Image:   an arch in the beautiful gardens of Warwick Castle, covered in pale pink roses and surrounded by a circle of grass at the bottom. It is surrounded by gravel trails and lush greenery in the background)



 (image: a medium shot of Warwick Castle with its tall stone tower standing tall in the front right corner of the  photo. There is green grass on the lower third of the picture  and surrounded by blue sky speckled with cumulus clouds)



 (image: the front exterior of some shops in  Stratford-upon-Avon, complete with Tudor wood paneling of brown designs on a white background. Some tourists and the road are visible in front of the shops)

Monday, July 13, 2015

East End Adventures

     So I don't know if this is entirely out of order, but it seemed like the most logical story to share next.

 We went from the fast pace of the very first day to Mike speed, which is more like what my friend and I were used to. The pace  of a very distinguished British gentleman with a cane is more like gimp speed. So, on a day soon after, we transitioned  from one of London's most well-known areas to one of its least known areas, the East End, more well known for being home to the water and, according to Mike, some of the  best ethnic neighborhoods  until about 100 years ago when gentrification started to come in.
      So today, in this area with a very large Muslim and East African population, you can see some of the most luxurious buildings and high-rises going up beside some of the most rundown sidewalks I have ever seen. I remember one of the places we stopped was a park that was famous for being bombed during World War II and several people have been killed there in recent years. It stood right across the street from a German Methodist Church, I believe, if that sounds right at all I can't remember,  that looked more like a hollowed out warehouse  and  a cross between one of those ugly apartment buildings from the 70s. The place was so adorned with graffiti, you can hardly believe anyone had ever been in there. I remember Mike standing in the park, the name had something to do with MLK I believe, and telling us that there is a very distinct line here between the neighborhoods. You could almost see where the West End stopped and the East End began (or any neighborhood closer to it for that matter.) The construction and the upkeep of the city was so distinctive between the two streets
     I began not only to empathize with different communities that had slowly  been pushed out of their original home, but there were very obvious similarities to Seattle and the way the economy is going. Perhaps in London you can notice the more extreme  class gaps side-by-side, but there are also many similarities in the ways that both London and Seattle use their water resources. A staple of the East End was what they called the Docklands (the Port). Also, I wanted to mention that, ironically, it had some of the best accessible transportation in the whole city because it was nearest to where we were staying. The DLR (or Docklands Light Railway) was the only form of transportation that has level entry on all vehicles without using any sort of  ramp  or alternative entrance.
      I think this was one of the parts of the chair where I learned that the problems at home are the problems  everywhere, and it could be just as bad if not worse for people with disabilities. It is intriguing that  even  with mandatory disabled toilets and the socialized health system, the income gap is still as great as any, and that could be me in any place. Not to mention the very clear separation of religious and ethnic groups.  I remember Mike told us a story about how he would take his summer classes on a  mandatory field trip to a mosque in the East and, to participate in a call to prayer  and  worship.  He recalled that the student said he was one of the most memorable experiences of their entire time there, to truly experience from another's point of view. This got me thinking about how I would be perceived, with physical weaknesses, as it were,  as that is very taboo in many cultures.  not to mention the fact that if I had to kneel down I'd probably be screaming and wouldn't be able to get back up at this point! This was the first of many experiences  in Mike's class where we would be asked to think from this perspective, and one that stuck with me, there's another one  that occurred much later, and the story will follow!
      But for now, back in “America,” as he affectionately called our group, many of the students were too busy to notice this because they were looking at the results from the American World Cup match on their phones (those of us who were lucky enough to have data in another country, anyway! Myself not included). So, because the day is not properly ended without a pint and some football, as it were, we went into one of the most historic pubs in the area and Mike  was gracious enough to buy the entire group a round while we cheered for the USA on  the flat screen. Let the record show that this was one of the only times I drank something that I enjoyed on the entire trip (Balmer's raspberry lime cider, if you must know, I was a horrible college student :-) )  That was indeed a true cultural experience, only to be outweighed by the time we ended up watching the final on a small TV in a room with the wrong words on the screen. Looking back now, I can only say that that spirit is comparable to the Seahawks playoff season in Seattle, I have never seen anybody get that excited about sports and don't plan to anytime soon.

      Until the next adventure…



(Image: A picture of a dismantled toilet that somebody was using as a garbage can. The toilet has the back taken off with several boxes and plastic garbage bags next to it in the middle of the street)

 I remember when I took this picture, my friend said “You better use that on your blog!"  So this one's for you, Hannah!

West End Adventures

     So, where was I? Ah, yes, I had just spent 2 hours on a bus with a broken chair and now it was the 1st day of the program. Notice I am recollecting here so details won't be as vivid, but I definitely remember some of the things we covered. If this  day was going to be any indication of how the trip was going to go, then I probably would not have made it! In this day, we covered much of what tourists would see in an entire week, that is to say zone 1 (central London). We started out learning about how town squares originated as a way for people to communally farm land and determine who had control of several estates in the area. We stopped inside of Russell Square which was one of the oldest and discussed the façades on  various buildings, whether made out of wood  or brick was an indication of the ages of certain buildings.  There was talk about how the feudal land system played into  community structures and  who was able to be on certain land.
      Then, there came a line that I will never forget. “The Victorians,” he said, “if they didn't like it,  they would just take any building, put a bunch of crap on the front of it, and call it their own."   We would soon learn that not only was construction material a part of this, but also layout of the buildings, the shapes of the windows, and the roofing material had a lot to do with it as well. As we  toured some of the oldest neighborhoods of London, the whole thing was to rethink  that we would never call anything “old” ever again.
      We saw many famous landmarks of central London, including Queen Elizabeth Tower (or what we layman would call Big Ben, Trafalgar Square, Westminster Abbey (where we would later attend a service),  Houses of Parliament, and many other historic landmarks which leads me to a funny story that happened in this area that I will write about a little later.
      For the time being, though, most of us students were concerned about operating our cameras or the new phones that we had just gotten overseas  that looked like your mom's old Nokia phone from 1990 (hi mom!) So, at that point, we were more than content to be exhausted and do some shopping. But there is one quote that has stuck with me after all this time, and I don't think I could find a better way to end this post.
      So we were headed through the famous landmarks of Trafalgar Square and many people had stopped to admire this very out of place looking statue of a  rooster. Come to find out, it's pretty famous actually. I think it had to do  with one of the Olympics or something.  So  as he's giving us his spiel  about  the area, our instructor says

 “I don't know why there's a blue cock outside, it's not even that cold."

 That still makes me laugh, sorry people!




(Image: Statue of a giant blue rooster in Trafalgar Square.)


Tuesday, July 7, 2015

Birthday reflections

     This year is a little different than most. Although I haven't been big on celebrations since I was a little kid, this year is one that I've been trying not to think about for quite some time, except for the fact that now it's actually here. You see, this year, I was given an ultimatum of sorts. Several of my friends have talked about the fact that many support services for people with disabilities either end or are significantly changed at a somewhat arbitrary age limit. Never mind the fact that I've actually been an adult for 4 years, and in charge of my own affairs, now I am officially viewed as one.
     This week has brought with it many changes, both in my social situation, and in the help I receive to live independently. Just because I am now 22 doesn't mean that anything has magically changed  at 11:59 p.m.  I am thinking of far more dire situations, such as the battle that my friend Nick fought several years ago against a similar policy, literally in a life or death situation. I'm thankful that I can adapt in this situation, but it has been  more than stressful focusing on purely survival needs and perhaps not on other things I should be at this moment, like this blog for example. If I have had to ask you for help in the last couple weeks, thank you! You know who you are.  In the midst of this, I am also job searching and looking for an apartment, both of which can be wonderfully complex things if you're in my situation. So you might be able to understand why, in the words of Taylor Swift, I'm not really feelin' 22.
     You know that feeling you get in junior high or high school when you realize everybody is leaving you and nothing will ever be the same? That feeling hit me last week. Hard.  My friends are off to do amazing things, and they are nervous and excited for their future plans, as it should be. It is a whole other kind of nervousness when you know exactly what life could be like for someone in your situation, who, a planner as I am, or as I have to be, did not have things figured out a year in advance.  Trying to stay optimistic in the face of  barriers for people like you is very overwhelming, and it is hard to stay motivated. I'm not saying that it won't happen, but it will not be easy, it will be real.
      But then I realized something else. I took a moment to observe how my support network has transformed in many ways,  and that there are still many people who care in  an emergency, whether or not they can help physically. So, I was able to spend the day with someone very important to me, and with her help, I was able to keep my plans that I had made before I was aware of a bunch of crises to come. After this, I decided I would pass the time at the movies.
      I went to see “Inside Out,” the new Disney/Pixar film  about the emotions inside the head of  an 11-year-old girl, and at that very moment, I'm glad I did. Even though  the experiences of Riley, the main character, were meant to be much simpler, I felt like the film encapsulated the bubble I was in at that particular moment. When you are trying to focus on so many things, you  really don't get a chance to be grateful for  what you have. I felt like the movie validated the ever-changing state of emotions, from depressed to happy to angry at any given moment. People need to know that that is okay, especially in these situations with no instruction manual. While obviously there is value in finding positivity,  that  can be really difficult in a world that shelters you extremely, no matter how noble its intentions, only to let you loose with no map as an individual with disabilities pursuing their dreams. If I had returned to the path of what was expected of me, I wouldn't be here where I am, having these issues at this very moment.  But  that's exactly what I want. And if Fear and Sadness took over last week, that's okay, because Joy is coming on the train right behind them.



Happy birthday to me!

(Image: Me, a white woman with shoulder-length brown hair, sitting in my wheelchair, smiling. I am wearing my spaghetti strap rainbow dress. The aisle of the mall is visible in the background.)