Wednesday, August 10, 2016

Book Review- Don't Call Me Inspirational: A Disabled Feminist Talks Back

     As they always say, third time's the charm, right?!

      When I decided to write this review, it was shortly before my second time reading this book. And I have to say, maybe I just read it too quickly the first time. I couldn't get into it.  A sporadic mix of stories about a woman's life who is neither of my locale nor my generation. The end made me smile at times, but as a journalist, none of  the narrative made sense. It wasn't chronological. Maybe that was my problem. But that was the point.

     Harilyn Rousso's memoir, Don't Call Me Inspirational: A Disabled Feminist Talks Back,  is not full of the funny, relatable stories  of not being able to put pants on, or of kids laughing at you, it is more philosophical and introspective than that. I only started to realize what each of these vignettes the other people of the story when I reread it for the third time starting last week.

      I think what  struck me is that this is a book about a person who largely was not comfortable with  herself. Why would you write a book intended to relate to other people when you as a person were having a hard time figuring this out? Well,  as I said, that is part of the mystery of this book when you read it again.

     The second time around, I read it as a disability studies analysis, and the distinct parts began to emerge. The chapter about looking at yourself walking in the mirror. The one about painting your "bad" hand for the first time. I began to see the empowerment from these seemingly negative perceptions of oneself.

     Last week, when I read this book for the third time,  I realized that the relatability  only comes from having  experienced a routine that has been completely disheveled or fallen apart. You have to have this experience of chaos before you find the organization in this book to be relevant at all. Looking back on how positive  my view of my formative experiences of myself is compared to an older generation's fear of difference makes me realize how fortunate I am, but someone else had to fall apart first.

      For all the seeming chaos in this book, I don't want to say that it is not relevant because it is clear that  this format is entirely on purpose. And for all the self-doubt that Rousso expresses in these pages, I cannot say that this book is negative, although it may seem that way on first read.  From the great fortune I had of  meeting her a couple years ago, I can say that she is a lovely woman, very engaging to talk to.  not wanting to be motivational, or dare I say-- the I word --  she is very much real, and speaks with a purpose. And in all those awkward movements and strained muscle features with which she finds fault, I see someone else. I see me, here in all my spastic glory. And behind those loud and breathy sentences, I have something to say. And so does she.

I can't wait to see how my thoughts on this book evolve throughout the next phase of my life. Definitely recommended and a great addition to any disability studies library!

Saturday, August 6, 2016

Double or No Double?

     A while back, I was reading honors profiles similar to these and feeling grossly inadequate. Not only was I not curing cancer or working for NASA, I was only about to have ONE degree with ONE minor specialty. At the time, this post had a different intention, as I was contemplating whether to pursue a double degree so I could work as a French interpreter/translator for the Department of State before I got that dream job as an international correspondent.

At the time, I didn't want to pay $150 for the placement exam. Now, ONE year later, here I am wishing I had $150 to contribute to my life goals. In retrospect, I probably spent it on too many sandwiches!

However, now, as I consider my options in a completely different field-- education, I am once again in a situation where the master's degree is considered the new bachelor's, it is even harder to realize your dream in a chosen field. Let's be real, I'm surprised that my major is not one of the 10 biggest wastes of time this year, according to Forbes, but if we were being honest, these descriptions are accurate.

In a field where you need relentless experience to get in the door, it may not be surprising that the unemployment rate for current journalism grads is listed at as much as 8.2%. My first thought is to wonder what form(s) of journalism count here. The good news, I guess, is that it is not by any means the worst ( sorry, psych majors!)

 Add on top of that the fact that approximately 73% of working age people with disabilities are unemployed, according to an analysis of the 2012 American Communities Survey. I can only imagine what conclusions would be drawn with more recent statistics. This could be due to actual physical and attitudinal barriers to accessibility, but more likely it is due to disincentives to obtaining government health care, which may be the only option for individuals who need a lot of medical procedures and equipment, meaning tha many individuals with disabilities live in poverty. While some states now provide a solution to the Medicaid problem, this is by no means a universal standard. In addition, there are now three states that allow the development of ABLE accounts for non-residents. You can learn more about that on the official website.

But let's get back to me  for a second! Get a degree, they said. It will be fiun, they said. Oh wait, just kidding! Get a master's, now THAT will be the ticket! The thing is, I know how completely fortunate I was last time around, and yet here I am thinking about having my foot in a completely different door, so  to speak. This year off has been very  challenging but very necessary. I look at it as a blessing, and through that, I have been able to pursue volunteer opportunities working with children in the spare time I have had, and I absolutely love it!

 Now, if I had a dollar for every time somebody said I should  teach children, I wouldn't need to sitting here writing this. At first, I didn't think  I would have the patience, and most days, I still don't. But, what continues to scare me more is the variability of how well  accommodations and models of “diversity”  such as myself would be integrated into the teaching industry (or not!). Not to mention  that as far as  diversity goes, my wheelchair is probably the only thing I have going for me, but that's another post for  another day.

 I am sitting here thinking about how much it would really matter, because there is this lovely article that I read a couple years back.  Yes, you read that right, almost 2/3 of those people with disabilities had  to drop out, and  I was  almost one of them despite my hard work, and the  immense amount of luck that had nothing to do with it. And I will still say that my experience was much better than most.

 By and large, I had very positive inclusion experiences within the school system. There was some hesitation at first, but once I proved that I could mesh within the mainstream, it was more a problem of “how do we get her the assistance she needs?” Which is still a problem, because I'm still here. But now, there's no IEP, no 504, and barely an ADA to protect me, as most buildings are” historical” or “would  require additional maintenance costs.” There is only a Fair Labor Standards Act, which I am still trying desperately to understand, and which, if you ask me, isn't very fair at all. How do  you tell kids that it's okay for even the teacher to need  a little help sometimes? And what on earth am I supposed to do if my wheelchair breaks down??

 So yes, I know that my degree is and was supposed to be the ticket to my future. And yes, every second I know that I am still just steps (wheels?) away from being a statistic, another one  who couldn't make it in the face of systemic ableism. Yes, I know I picked the worst combination possible. No, it shouldn't matter whether I check  that little  disclosure box on my job application, but yes, it does anyway, whether I like it or not. Yes, my disability is a source of perspective and enlightenment. No, I'm not just a liability.

 Yes, I know I'm screwed. No, I'm not quitting!

Friday, July 8, 2016

Finding myself in "Finding Dory"

Just after opening weekend, I eagerly rolled into the theater, preparing to  crush some little children and their popcorn on the way to the wheelchair seats.

Sadly, with the exception of, like, two people, we were the furthest ones forward.

You see, I had been waiting for this moment since before they were born.

Unlike many, I did not see Disney/Pixar's Finding Dory as a sequel competition. I knew that this one would be different. Indeed, it would contain the same brilliant animation seascapes to be expected from Pixar, contrary to popular critiques. It contained enough flashbacks to Finding Nemo to satisfy those who hadn't seen it, or perhaps might have forgotten some things, similar to the title character herself.   Maybe it was because I was so young, and I didn't know better yet, but I didn't really  relate to Nemo and his “little fin.” In the first film, this really was not a central topic.But I knew  this one would expand on the idea of disability and acceptance in a big way, unlike its predecessor.

Unless you've been living under a rock, or perhaps in one as the case may be, you know that Dory (Ellen DeGeneres) is a blue tang fish who has short-term memory loss (I cringed when her parents said she "suffers' from it in the beginning, but this might be more accurate as to how Dory views herself sometimes as she has several panic attacks throughout the movie). She is on a misadventure from school one day when she has a flashback that sends her on yet another epic adventure to find her parents, who she is separated from as an adorable little Baby Dory.

A lot of critics take issue with the fact that this adventure unfolds in much the same fantastical way as Marlin's search for Nemo. But I don't see this as a bad thing. The journey to the Marine Life Institute has enough ridiculous shenanigans and plot twists to sustain just the audience it was intended for: four-year-olds! Bonus points for automated Sigourney Weaver and a cynical septopus with (other) sea creature issues (Ed O'Neill), and you have some fun for the adults, too!

But I will get back to the portrayal of Dory's memory loss. While their language is sometimes questionable, in my opinion, Dory's parents take their very real fear and channel it into a practical approach that acknowledges Dory's challenges and figures out how to deal with them without devaluing her. This is everything my adult self could ever want from parents and educators. I won't give it away, but the part where Dory remembers to follow the shells had me blubbering more than Destiny, the low-vision whale!

There were many other relatable moments, too.  Dory is constantly apologizing for her disability, something I find myself doing so constantly, it becomes a nervous tick. Even though she knows better, she still feels like she is "doing it wrong", a notion usually confirmed by society, either intentionally or not. That experience is so. so. real.

"What Would Dory Do?" There is a point in the film where Marlin and Nemo run out of ideas while looking for Dory.  While trying to think of a solution,  Nemo realizes that this is not how Dory would solve the problem, and it causes the two of them to try a different way of thinking for processing the situation, much like somebody with a sensory disability might do.

 How Dory Interacts with Other Disabled Characters   No matter if Dory is trying to solve her own problem or help one of her friends, she always recognizes them in a positive way and how they can contribute to the situation. This is not to say that this is always cause for positive thinking, but if there is a dangerous situation, rather than being afraid of something she knows nothing about, Dory tries to use her friends to help her save the truck from going to Cleveland, showing the value of interdependence.

 Universal Design While on their quest to stop the truck, there is a scene where Destiny doesn't think she can get on to the bridge because she can jump past the wall. Dory reminds her that in the ocean, there are no walls, and she can swim exactly the way she wants to. This is a well hidden metaphor for inclusion but the world would be so much better if people just understood how creatures coexist in the ocean.

  I'm sure there are many more that I missed, but overall I would give this film a very strong rating for how it presented the main themes of disability and acceptance to children and adults alike. Yeah, some of the plot points might not be interesting but that doesn't stop this from being one of my new favorite movies. So well worth the wait!

 What did you think?

Wednesday, July 6, 2016

A Different Kind of Powerball, Episode 2

Hello, friends.

As you may recall, a while ago I posted this project when I was first learning about the sport of Power Soccer and how it is expanding here in the Pacific Northwest. Well, I had to take a hiatus due to other life circumstances, but, starting in May, I was able to pick up the sport again now that it has gotten restarted.

With a whole new set of people  involved, that  means many opportunities for team events, practices, and skill-building.  With that in mind, a few of us from Seattle Adaptive Sports  were able to travel June 25th to the B.C. Provincial Power Soccer Championships in Cloverdale, B.C. This event was  put on by SportAbility BC, an organization that I was already familiar with because of my brief time at Camp Squamish in 2009.

For me, this was the first time I had seen a live game in action, other than played by my former teammates at Paralympic Sport Alaska. It was amazing to see the game played with the proper equipment, speed, and finesse. When growing a sport such as this, a regulation scrimmage with  eight players is much different than what we now have the opportunity to practice with three to four  players.

I was able to catch up with SportAbility executive director Ross MacDonald about the game. "Power soccer has been going on for probably over 20 years," he said. MacDonald noted that the sport has been a part of his organization for five or six years. His organization is also responsible for other sports, such as sledge hockey, boccia ball, and seven-a-side soccer.

I also had a chance to talk with player Keith Knight, who has been playing the sport for about 24 years, after learning about it from a  family member at a local rehabilitation  hospital. Knight has played for several teams, including a Canadian national team at the FIPFA 2011 World Cup in Paris, which he noted as a favorite experience.

This  tournament consisted of four teams composed of four individually registered players plus  two extra subs. As these are not competitive teams, most of the competitors had played with each other in other venues or practices. There were nine games in total, as well as classification and speed testing practice sessions. The first game I had the opportunity to watch was the Thunder versus the Hurricane. I was not only impressed by the speed and precision of the game, but also the equipment. This was the first time I got to see sport power chairs in action. They are faster and lighter than my everyday Beastmobile and frequently do not have the spin safety  inhibitor that restricts the spin kick, which is absolutely crucial in power soccer, when the game becomes much more a game of high-speed pinball as it should be, with the 13-inch ball being shot across the court at frightening speeds!

"If you have a power chair and you want to play, you'll get a guard that goes on the front of your chair-- whether it's plastic or metal is really up to you-- and it's all about controlling the ball, " MacDonald said.

The equipment setup is unique for every person, as it fits their support and mobility needs. Some have bought these specialty sports chairs for play, usually acquired through fundraising or other donations, while others, like Knight, continue to use their personal equipment for play, although Knight said he is in the process of getting a sport chair, which he is excited about.

He also said he enjoys playing offense more, but his favorite moments included blocking a crucial goal in preparation for the championship.

But MacDonald's favorite moments are more about the bigger picture.
 "My favorite moments are when new players have moments of success. You know, they're new to it, they're still trying to figure out the game, because they're playing with players at a higher level. But whether they make a great pass or a great play, or the best part, they score a goal, and then you see the smiles on their faces."

That's enough for me to be back again. In a jersey.

But, let's be real, I'm a little more competitive than that!

You can learn more about Power Soccer here.

Image: Three people in power chairs and one person standing are visible on a basketball court. The woman in the foreground has a white jacket and a yellow jersey hanging on the back of her chair. There is a man appearing to play with her, wearing a white shirt, yellow jersey and jeans. A woman is slightly visible in the background wearing a white shirt and a green jersey. The coach is a woman with dark hair standing in the background, holding a clipboard. 

Three players are visible on the court, all are in power chairs. One man is wearing a yellow shirt with a black chest strap.  A green foam block is visible on his knees. There is a man behind him wearing a red jersey. The third man is facing away from the camera, wearing a green shirt. The blue cushions on his wheelchair are visible. Spectators are visible throughout the window in the background.

Image:A wide shot of the court with six players visible, wearing red or green jerseys. Player Keith Knight is on the left in a yellow jersey. Various officials are seen standing in the background

Image: SportAbility BC executive director Ross MacDonald, smiling from his manual chair. He is white with short brown hair, wearing a navy blue SportAbility jacket, gray athletic pants, and bright blue sneakers. Background is the lobby of the recreation center, which has a wall painted to look like the Northern Lights. 

Saturday, January 30, 2016

Conversations with strangers: When it's more than just saying hi

      I got a lot of interesting feedback a little while ago when I shared a story about something that happened to me. I guess you could say it wasn't particularly unusual, as people exchange pleasantries and have conversations in public all the time. A man was sitting beside me at the bus stop on my way to one of my weekly volunteer positions, and he said hi. I know, SHOCKING, right? But what happened next perhaps was more unexpected.
      He saw all the travel stickers I collect on my wheelchair of different places I've been. He saw one from Abbey Road and asked me if I had indeed been there. I told him I had, and I told him we had local professors in some of the places to guide us around and show us more of the local experiences rather than just tourist attractions.  I told him how much  I love the Beatles, and even though I  wasn't that annoying tourist who  stopped and took a picture at the road, but I enjoyed the experience nevertheless. I told him how horrible the traffic was coming out this way, but today wasn't too bad. He asked me what I do now, and instead of it being like that,  I just mentioned that I'm blogging while looking for full-time work, and I hope to produce some more videos soon. When my response to “do you post every day?” was a chuckle and an enthusiastic “I wish,” he found me here online.  I don't know if he is reading this today, but, to the guy on the D line, hi, and thank you.
      I realize it's kind of ironic that I'm thanking a stranger for having an everyday interaction with me, when the whole point of my blog and some major campaigns in the mainstream news media is to promote inclusion of people with disabilities. And while the message is there, I realize that sometimes it can have an adverse or unwanted effect. So that got me thinking, we should talk about how we do (or don't) talk about disability.
      I have been of the thought personally for a long time that it is okay for curious people to ask questions. I usually don't mind answering them. That said, there should probably be some thought put into how you ask or what you say to a person. Yes, my condition is probably going to come up in conversation, and that's great! But, does the first thing you say when you see me really have to be “What's wrong with you?” ?  I don't think so. A simple “Hi, how are you?” or a comment about the Seahawks getting pummeled 2 weeks ago will do just fine.
     The thing about this that I don't understand is that  awareness campaigns, like this one or this one, while they share my overall message,  seem to make people even more uncomfortable than they usually are about talking to me. They acknowledged me!!  Now what do they do????  It usually starts with “Oh, my grandma had a wheelchair,” or “My sister has XYZ..." or my personal favorite “I really don't want to offend you, but......"  I'm not offended by your curiosity, and if I am you will know about it.  Does that mean I want people to  stop asking questions at all? Absolutely not!  Do I exist to be the Wikipedia page for my disability? No!  Will I answer your question? Yes,  most likely! Is it sometimes nice to have a random interaction with a stranger free of being praised for existing and crappy wheelchair jokes that I've heard 1000 times? You bet!
     And that is why I thank the guy on the bus the other week. Go ahead, ask about disability.... it's not a curse word  (trust me, I know lots of those, too!), but there are also so many other things you can ask about also. Travel, music, movies, books, sports, your destination, the latest meme on the internet, ANYTHING, really.  Disability can be part of the conversation, sure, but there is much more when you are trying to get to know someone, even briefly.
     Bottom line: I know that  none of us interact with every single person we see anyway. If you are going to interact with me, please let it be because you would have done so anyway, not just because you thought it would make me or you feel good because I'm disabled, or because someone told you to  talk to me for no reason. If you're a nice person, that's great, and I appreciate it, and if you don't want to talk to me, that's fine too.
     But, if you do, just put some thought into how we interact and it will make the experience more enjoyable for everybody.

Monday, January 25, 2016

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. )

Wednesday, January 20, 2016

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.