Blurring the Lines, Part Two

Ok, I realized I did Part One and never actually finished the series. So, here goes. Be prepared for two more exciting updates!

First, what actually happened....

For more medical background on the issue, read this.

 I realize that I don't normally share about medical stuff but since I started this series so long ago I should finish it, and also, many interesting thoughts on the subject keep coming.

 As some may know, CP is not a progressive  condition per se, but it can  adversely affect the way that our bodies deal with aging, stress, and multiple other factors. Mainly,  by producing extreme spasticity, or high muscle tone. To illustrate this, I will share a story that happened one day. My brother wanted to play with his new football. He knows that I can't throw well at all, but  I obliged him anyway. Of course, my throw flopped on the floor about a foot in front of me.
"What the heck?!  You throw like a girl. Actually you throw worse than a girl. S (my sister) can throw better than you,” he said.

 Upon hearing this, my dad comes over and puts the ball in his hand. He told him to throw and then proceeded to hold his arm back with as much strength as  my brother's arm could handle.  “ Now try it.”

 My brother protested about how it wasn't fair but he understood. Normally I don't advocate for any kind of simulation, because it's not going to be accurate, but this is the best idea I can think of.

 So, going into this process, most of the major muscles in my entire body felt this way most of the time. It is usually very confusing to explain this to people, as it is not painful, exactly, it is just that this state of not being relaxed feel so normal it doesn't feel like anything. You are used to  your muscles fighting against you every single time.

 After a series of not entirely unpleasant but less than pleasant interactions with my local therapy clinic at the time, in 2013,  they decided that the only way that they would continue providing services was if I agreed to do the trial process for intrathecal baclofen therapy, as described above, more commonly known as the baclofen pump.  Now, I had taken the medicine as a kid in liquid form, and it helped somewhat, but let's just say  I was an extreme space cadet and could not focus at school or on anything else. Where I was growing up, they did not have any specialists who could implant these permanent devices, and, with the serious risks of withdrawal, it was put off for a number of years, until I could decide if I wanted it for myself.

 Well, at this time of interaction with the therapists, I was plenty old enough to decide, and grudgingly agreed to the trial process, as it was temporary only, before receiving the implantation surgery. I was told to expect anything from retaining my normal function and improving function, to falling flat on the floor and not being able to move because all of my muscle tone function would be taken away. The effects are so varied in different patients that no one can say for sure until you do it.  Believe me, my friends knew how many nights I lay awake thinking about this, and sometimes, I still do.

 On testing day, I did as instructed and did not eat or drink. I will say that the actual spinal injection hurt less than putting in the IV for fluids, which they had to do about 3 times, I don't know why. After about an hour, they came back and said “how do you feel?”  I said I felt very strange, but I couldn't explain why. It was just an incredibly still feeling, and my entire body was warm. I would think that this would be because blood is flowing freely and not constricted by tight muscles  or blood vessels.

 And then, the fun part happened. They did all the functional tests and asked me to raise my arms and move my fingers etc.   And  there it was, I was able to do it with absolutely no resistance from my arm whatsoever. I could flip my left hand completely over flat and hold something in both hands, something that I can only do on my good side on a daily basis. This was amazing! As long as I felt fine for the rest of the day and my function didn't actually decrease, I would be a great candidate, and this would change my life!

After several more hours of observation, which included me finally being able to get out of bed (which went way better than expected), I was told I should go home and take my medicine as directed that night, as I usually do. My other aide put me in her truck, which  she remarked was so easy to do because I bent, and we were going to head off to Costco to go grocery shopping, but first, she made a special stop at Ezell's  fried chicken for the occasion.

 The thing is, I don't actually remember eating the fried chicken because I was so tired I couldn't sit up in the car or keep my eyes open.  When she finally woke me up so we could get out of the car, she said I was a complete dead weight and asked me if I was drunk, because she couldn't understand my words, which are usually pretty clear unless I'm excited.

 “No,” I mumbled. “This would be  the baclofen hangover. It does this, every single time.” It felt like somebody had punched me in the face and knocked all the wind out of me. The doctors assured me that the side effects would wear off in 2-3 hours.  So we decided that after that I would go home and sleep it off because that was all I had the energy to do,  in the morning  I would be good to go!

 Except I wasn't. This feeling of drunkenness lasted more than 24 hours, at which point I called the doctor's office. They said it was probably because I had taken my medication as instructed. But also probably because I am hypersensitive to the dosages of this medication. All I knew was that I was glad it was summer because if I had to be writing any papers or working right then, forgetaboutit! I was somewhat   fortunate and  unfortunate enough to have my second level ASL evaluation two days later, but at that point I was unsure if I could keep my eyes open. Luckily, we all know how that turned out!

 Turned it out that upon my follow-up about a week later, there would be more complications to receiving the procedure as originally planned, so I put it off, hoping that someday it might be available at that same facility with new doctors, at a time when I was not working and was free to experiment with this. But that's for another post, after all it has been two years and I still haven't made my decision.

 Stay tuned for Part Three........

 (Image: me smiling from a hospital bed after the spinal injection trial began, July 2013. I'm wearing a hospital gown and my left hand is bandaged from being attached to an IV pole. My right hand features the 17 jelly bracelets that I once wore in various colors. I am holding my cell phone and a lunch menu. )

Homeless in London

      A lot of times, we end up talking about social class, income  inequality and gentrification, especially here in Seattle, where there are constant tech markets and others, popping up and literally no place to house them.
      I don't know if this is an observation of me being white, or disabled, or both, but I tend to get approached a lot by homeless people when I am out and about on the streets. And, as there are increasingly more of them, these interactions happen more and more.  I am not one to carry around physical cash, and so usually I don't have anything to offer people right away, but I often feel guilty. Perhaps it is this combined with my own desire to protect myself as an easy target while out alone.
     The thing about traveling to another country that is well-developed, a world power, and constantly being colonized or jostled around is that it is not much different in London. However, there is a different perspective somewhat on how they handle the homeless situation. And what study of contemporary British culture would be complete without putting this directly in front of your face?
 Or so said our Contemporary Britain professor for the seven years  leading up to that point.  He had met  a homeless woman and her dog in his travels, and every term thereafter, invited her to speak to his class about what it was like to be on the streets.  The difference is, that while here in the US, the laws about loitering and property damage, in Britain it is actually illegal to ask for money  on the streets  in any situation, as it is in most of Europe, and the police may repossess anything that they assumed to have been given to a person as any kind of donation. I remember this woman said that her biggest obstacle was that her dog, her only companion after leaving a long-term partner and before that a very violent situation, had a lot of health problems and was not allowed in any shelter or housing space. Rather than give up the dog, she put anything she was given first to her dog, and then to herself. As of this program, she had been  through a program aiming to clean up the streets for the 2012 London Olympics, almost without warning. She had tried to find employment in vain, despite being well-educated, because she didn't have an address, and then,  of course, there was the dog. She often talked about getting little sleep, and being awake before the police came to chase them away. She said that she had often slept in accessible bathrooms, which were usually locked somehow. I admit that this made my privileged self cringe a little, but it made a lot of sense, often they were the nicest and cleanest places in the area.
       The whole point of this is that, as I go about my daily errands, this could be the story of any one of the people here. Despite the difference in law to some extent, the same catch-22 exists. And,  the fact that, for job searching me, this could often be too close to reality to worry about other people. For years, I swore I would never give money to random people, instead choosing to volunteer my time in other ways where people can benefit, such as the food bank. But stories like that of this woman and her dog often make me wonder why I didn't offer to buy a cup of coffee  for that guy on the corner. While I may not have cash, in a few weeks when I have the means to do so, I will do something else. And for that, I thank her, and her dog too.

I don't think this is what Rick Steves meant when he said "Through the Back Door"

     It was the evening before our last play, which would turn out to be a serial killer love triangle vampire drama  with a set that would later be used by Lady Gaga in her recent Oscar  performance  We were looking for dinner as usual, and I was on the hunt for some of the best Mexican food in London.  I forget how it happened, but somehow we decided that The Rainforest Café was our best option.  My friend  went inside to ask about accessibility, because the entrances were very confusing. They told us that their lift (elevator) was out, but assured us  that there was another way to get in the restaurant. So, after about 10 minutes, the waiter apologized and came out of the side door. They explained that they actually   freight entrance to gain access to the secondary elevator. We went through a maze of  hallways clogged with cleaning supplies and various instruments that made it look like the back stage prop room of an urban musical, or as  my friend would later aptly describe “the set of an edgy urban horror movie.” Needless to say, this “accessible entrance” was actually so inaccessible because several doors and important pieces of equipment had to be moved out of the way by staff members, and it looked scary enough that this was questionable. Now, I've been through some interesting entrances in my day, and it usually adds character to the place, but it was only about to get worse from here.
      About 10 minutes later, we did manage to end up in the downstairs floor of the rainforest Café. Now, this was the first time I had ever eaten at the Rainforest Café. All I knew about was the kids cups and the store full of giant stuffed animals on the first floor. I was completely unaware of the sound effects and giant animal costumes or statues that might occur. Anyone who knows me knows that I still (yes, really) have an irrational fear of  mascots or people in large costumes touching me, or basically getting within five feet. I can handle this, but it still weirds me out, stemming back from when 5-year-old me  thought Donald Duck was a stalker at Disney World.
      So anyway, there were some very lifelike gorilla  animated creatures in the corner of this basement space, and here we were, sitting, eating  our nachos all alone, which could have used more cheese, by the way. And, suddenly,  thunder started booming and lightning flashed throughout the rainforest scene, accompanied by a cacophony of shrieking animal sounds. Anybody who knows anything about CP knows that one thing that we never get rid of is called the Moro, or startle reflex. It is common in babies up to 3 months old, I believe, and is usually grown out of. In my case, however, it caused me to spaz out of my chair and utter a few choice words then, and about every  10 minutes thereafter, even when I knew it was coming. I also have issues with suddenly switching strobe lights (i.e. "lightning"). Maybe this is why I don't go clubbing! Anyway, these two  elements combined with the straight up creepy factor of a plastic gorilla staring you down while eating do not lead either of us to recommend this place for people who have trouble with loud noises, seizures, PTSD, dizziness, or creepy plastic figurines. Although the food was decent, it was also the most expensive meal for two  we ate on the whole entire trip.
     I would like to say that this was the weirdest element of our night, but I would have to say the sadist pedophile vampire love drama was still even creepier. What a night that was!

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.

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)