Friday, November 22, 2013

Privilege is......

·             So I spent  the last couple weeks in diversity  training for various parts of my classes. One thing I love about it is that  it really tries to get people involved in something that they don't often think about. I love the work that I do, and have started to do in the past year. I will say by no means am I a perfect human being, and  I learn more about how to be more inclusive every day. Making this list of my own  privileges in various categories is something I should have done a long time ago.  Please feel free to discuss and add any  that I might have missed. Discussion with others is really what it should be all about.

·      Straight
·      Cisgender
·      Have roof over my head
·      Have enough food to eat
·      Getting higher education
·      Have nice clothes/technology
·      Native English speaker
·      U.S. Citizen
·      Hearing
·      Spent time raised in a middle class family
·      Can communicate without relying on others
·      Never had someone question my sexual orientation
·      Can see a Doctor when necessary
·      Can yell for help in another room and get a response
·      Can use phone independently
·      Can listen to music whenever I want
·      Have never had someone outside my culture think they know my language better than I do.
·      Can work with accommodation
·      Can tolerate chemicals and scents without getting sick
·      Sometimes given charity because of my ability status
·      Have use of all five senses
·      Never had my sanity questioned legitimately
·      Can write
·      Can type
·      Can make my own health care decisions
·      Can travel
·      Have access to clean water
·      Can have conversation with almost whom ever I want
·      Within the acceptable standards of size, weight and beauty
·      A traditional age college student
·      Can read
·      Have never been brutalized by police
·      Can spell correctly
·      Have never been racially profiled
·      Chronic pain is not so much that it affects my daily existence
·      Neurotypical
·      Can vote

Sunday, September 29, 2013

Get the Picture: My thoughts on the Miles story

I would like to take a few minutes to address something very important: inclusion. While the implementation of what the word means may vary  in today's society, there is still something that sticks out at  the most basic, fundamental level here, when we see the interactions of kids today.

 Although this story is old news now, I still feel that it is appropriate to weigh in. A few months ago, an elementary school class picture went viral, when a Canadian mother was outraged that her son, who uses a wheelchair, was separated from his classmates by a large gap between his wheelchair and the bleachers. Although he was still grinning from ear to ear, this serves as a sobering reminder of how others can sometimes view us, albeit out of complete ignorance, as the case may be. You can look at an article about this incident here.

I've heard people often say that kids can see beyond a lot of differences, and there is no evidence against that here, as it was admittedly the photographer's staging error in this case. Although I cannot seem to think how anyone would not notice that the child is not with his classmates, this is not the first of these experiences, and sadly, it will not be the last.

Needless to say, I have a (maybe not so shocking) lack of personal evidence to support this claim due to my  own bad  experiences with Lifetouch photography, disability related  or not. My parents often hated the photos, and refused to buy them, leaving my only recollection to memory. If I recall, the last “good” school photo of me that was purchased was in second grade, of me sitting on a prop bench in a yellow dress. Coincidentally  enough, I am also out of my chair, as Miles was in the retake of this photo.

  While I am happy that the company eventually did right by Miles and his family in retaking the picture, I think it also goes to show some lack of training or willingness to shoot a flattering picture of the participant in  their wheelchair or mobility aid.  After several years of photo bomb disasters, usually involving some implement of my wheelchair obstructing the field of view, my parents requested, and I agreed, that  I  be out of the chair for all school pictures in an effort to look more normal.

 To this day, one of the only elementary class pictures that I can find, from 6th grade, hangs on my bedroom wall. Every time I meet someone new, they see that photo, and they are astounded that I am standing upright, even if a little crookedly, next to my classmates.  But every time  I look at it, I can't help but notice a rather large gap between me and the boy next to me, as I stand next to my aide and longtime friend, who has a hand behind my back so I don't fall backward.

 All for the symmetry of a photo.

Think about that........

Friday, August 23, 2013

I'm (not) gonna pop some tags....

OK,  I have a confession to make,  I (like most every other young person on the planet right now) am a little more than obsessed with this:


 I used to despise this song, in fact, I kind of still do, but now, thanks to a running joke, I can't resist following along, every time it comes on

Even though I  may be jammin', in reality, I want to make a couple of things very clear. First, I am aware of the race and class politics that overwhelmingly  result from a statement like this. Secondly, I will make it known that you will not, in fact, find me in the Uptons, or in any other section, for that matter.

 Why, you ask?

$0.22/hour. That's why.

This is the wage paid to some disabled workers at Goodwill stores across the country, for various duties such as sorting, hanging, and stocking clothes and donations. Although wages vary by state and region, the list of wages that are pennies on the hour is staggering.

But, isn't that illegal?

No, thanks to a loophole  in the Fair Labor Standards Act, from all the way back in 1938. This provision, originally meant to provide jobs for disabled veterans returning from World War II, basically allows employers to pay these employees on a production-based scale using a percentage of minimum wage. The idea was  that it  could be an incentive for employers to get cheap labor, while thinking that these employees might not be as efficient, and therefore should receive lower pay. The intentions sound good, right?

 But what I  don't understand is that now that the laws have  changed to guarantee  minimum wage, which is today often over $8 an hour, to  every other American, why is there still this exception being made?  I can understand if a whole company were based on this production model, but this only applies to a certain group of employees. And what's more, Goodwill, like most multimillion dollar corporations can probably afford to pay ALL of their workers a fair wage, even by production model standards.  Now, I'm no economics major, so maybe somebody can help me out here,  according to a 2011  annual report linked here, almost $3 billion  was given out in wages to 189,000 employees nationwide.  With the  math  I just did, this falls well below the minimum wage requirement for anyone. It did say that employee about 64,000 people  that had “trouble finding jobs”, which may or may not be people with disabilities. No exact figure was given here, I'm still looking. Based on the percentages, I'm trying to figure out exactly what percentage is used for wages, using this tutorial. Being a  nonprofit organization, it does not appear to be much,   according to this which is understandable, and  yet, the CEO continues to make close to $500,000 a year in most regions. Here is another article about this.

 The idea to run these types of programs comes  from what is known as a sheltered workshop, basically a place where disabled people are employed separately from others, in order to gain vocational skills and sometimes social experience. People  who end up in these programs often stay there for a very long time, contrary to the belief of being just a first  “stepping stone ” to more gainful employment.  It is often believed that  there is no alternative for many people who work here, because there is a “who would hire them?” kind of mentality. Therefore, a lot of these organizations  basically have a bunch of volunteers, but call it a job. Because many businesses do not find the value in employing people  with disabilities, a lot of the skills we do have are overlooked, regardless of what our disability is.

Some  parents and families argued that these places change their children's lives, and that they are happy working there, adding a sense of personal fulfillment in their lives. While that  is great, I wonder how fulfilled they are when they realize they can't even buy a pack of gum  for their efforts.    I've  heard that some people justify this because people just “don't understand” that they are earning a living, so they don't care. Meanwhile, that person can't even afford to use the public transit to get to work.

Below is a video that aired on NBC's Rock Center documenting  this issue

I  believe that individuals deserve more credit than they  are often given. People who defend  these practices by saying that providing gainful employment is depriving somebody of their  choice to earn  a living clearly do not understand  today's standard of living.  I think  this issue, not just with Goodwill, but other businesses as well, merits awareness because many people and businesses don't realize what could actually be added to the workforce if the talents and skills of disabled workers were utilized, and they were treated like every other citizen in this country. We have goals, too!

The Autistic Self Advocacy Network (ASAN) started a petition on to stop the payment of subminimum wages to disabled workers. I hope you'll sign it. I did.

Additional Resources:
Fair Labor Standards Act of 1938.

Thursday, August 22, 2013

Weird dreams

 Warning: Some images created may be disturbing

I don't usually remember my dreams, so it's  weird that these 2 in particular stuck out so vividly in my mind. I  try not to take too much stock of it, but these ones seemed inexplicably linked (subconsciously or otherwise) to  my recent experiences, so I  thought I'd share.

Do you ever have that feeling when  you wish you could say things to people, but you can't  because it's not professional? Yeah, cue my first dream....

As anybody who manages assistants and caregivers knows, It can be extremely stressful at times having different people with different standards how to do things come into your house and help you. It can be even more stressful if “knowing how to clean up after themselves” or “common sense” has no place in the hiring criteria, through no fault of your own.

 So, in my first dream,  similarly  to what I started doing in real life, I was writing a training manual for my new aides. In the case of the dream, though, I was hiring  a bunch of my friends and people that I knew. Therefore, I was writing a bunch of sarcastic stuff, and stuff that I could never get away with saying to a new employee in this book.

 For example: “I don't care  what the company says, you are not responsible for me, I am responsible for me.  You assist me.  I can go  wherever I want and do whatever I want with whomever I want. If you don't like it, you can....." Well, you get the idea. Or  “If you don't know how to use a Ziploc bag, maybe you should go back to 1st grade.  Okay,  maybe that's a little harsh, but I don't think it is as much harsh  as frustrating when you're the one that needs help, but you can do a better job at some things.

 And many other funny ones that I will not share  here, lest I cause a hullaballoo.

 Fortunately, this one had a happy ending, when the person I ended up hiring understood and appreciated my snark and we had a great time!

 Now if only  I didn't have to write an instruction sheet on how and where and when  to take out the garbage in real life........

The second, and final,  dream that I would like to share with you is a bit more graphic. Those that might be triggered  by mention of aversives might want to stop reading now.....

This dream was perhaps the  subconscious  result of  something I had done a couple days earlier.  I was trolling my favorite blogs, as I often do, and came across Autistic Hoya's  resource section on the Judge Rotenberg Center, linked here. I had only heard about the atrocities that happen here in passing, and I wanted to learn more and make sure I knew the facts. I don't normally let  the written word affect me physically, but this one gave me the shivers. I will spare you  for  a future blog post  about this place, but I think that is the precursor to this second dream.

 Although,  very thankfully, there was no electric behavioral shock therapy of any kind in this instance, the dream   started with me finding out  that I was getting a new aide, and she used to work at the JRC. From the time we met, she did not take me seriously at all. Although this is not incredibly uncommon, she also denied me the right to make choices about anything. I was wearing this jumpsuit/straitjacket thing  and was made to use incontinence supplies when I did not ask for them. I was also forced to wear a helmet everywhere and (for some reason  I was walking without a walker?) one of those leashes for kids, except it was adult size. Although I remember in the dream, this woman did not physically threaten me, she did talk down to me, and say that if I “acted out” I would be reported to the company as being “belligerent.”  For some reason in this dream, the company believed her, and  they were trying to place me elsewhere.  Thankfully, this dream also has a happy ending. I somehow devised a plan  to have my friends come over and kick her ass while I called 911. Don't ask me how I did it. Apparently, I wasn't  allowed to use the phone either.

Back to reality here. This dream  told me 2 things:

1.  Don't read about  scary places right before you go to bed.
2.  I need to make sure I'm in control of the situation, NOW  and always!

 Due to a series of recent events,  schedule changes, and random crap going on in general, I have slowly  felt myself losing control of the situation at hand over the last couple of months. This dream was a large reality check and has caused me to be more clear about what I want, and sometimes even annoying pointing out the little things.  In the past couple of weeks, I have met with others to discuss the situation and rework some things as I'm going through a lot of changes as  school starts up again, not the least of which is living with others for the 1st time (other than family or caregivers). Now I'm finally starting to feel back on track. I think every once in a while we all need a reminder, because if we're not in control, where else would we be?

Saturday, July 27, 2013

Stop, Drop and Roll?

 I'd like to take a minute to address something rather ironic::  home safety assessments.  While their purpose may be rather straightforward,  to ensure that I can live safely in my house, wherever that may be, I find the execution of these assessments and the evacuation plans associated with them rather funny.

 You see, back when I started having people from an agency come to help me out several years ago, the supervisors would always do a safety assessment to make sure that there were 2 usable exits inside the home in case of an emergency. Back in the day, when we had only one (because the windows either didn't open, or weren't big enough to push me through. The agency tried  to argue at the time  that it wasn't safe for people to come assist me. We argued back with “what are you gonna do, I live here.” They never tried that one again.

Fast forward about 8 years to the land of lovely college dorm/apartment living. Although the staff have been great at otherwise addressing my  accessibility needs, at the time I moved in,  there was not a new building with an accessible unit on the ground floor. Needless to say, this pissed off several of my family members  for many valid reasons, most of them going back to my ability to exit  in  an emergency. I won't say where, but I would be living on an upper floor of  a high-rise building for the next 2 years, and then subsequently transitioning to a very similar one, where I am right now.  Within minutes  of moving in, my family and I were informed of the emergency plan: get out of the room and…… wait. That's right, protocol is to wait in the landing of the closest stairwell until the paramedics come up to get me,  as they are the only ones “certified”  enough to  carry me downstairs if the elevators  are  not working. Yes, I know I'm just a huge liability for the building, but I thought there was this thing called the good Samaritan law that  protects  the 25,000 random people who ask if they can help in these situations  as I'm waiting ever so patiently in the stairwell.

 See, this takes me back. About 6 years to be exact. My middle school had 2 floors, and my classes were pretty much divided half-and-half. Not to mention they wouldn't give me a key to the elevator, but that's another story. Being that I was on the 2nd floor for about half of the day, naturally they had to devise  this foolproof fire escape plan. Let me tell you what it consisted of:
 1st, there was me, who would be transported down the 2 flights of stairs in a Hoyer sling, with a different person holding each corner. In front of these  four were 2 additional people to walk in front of them, clear the hallways, and make sure they didn't fall. A seventh person, ideally the nurse, was supposed to retrieve a spare manual chair from her office and put it at the bottom of the stairs for me to be deposited into. I remember running several drills of this routine, and basically, by the time everybody would've been properly assembled, I would have burned to a crisp if it were a real fire, which myself and my aide understood very clearly.

 So,  given this new “wait and see” policy that was obviously employed for a CYOA type  purpose, I complied  with instructions to stay put during the drills and not evacuate. This worked, except for when, on one occasion, the fire marshal actually didn't come up all the stairwells to  verify that I, the disabled resident, was not waiting on my assigned stairwell. Because of this, I didn't know if there was an actual evacuation or just somebody being stupid. Needless to say, the situation turned out not to be serious, but it leads me to question what would happen if next time I just happen to agree to let 2 of those   handsome  football players carry me down just to see what happens...

 I won't  go into detail here,  but another reason why  this policy needs to have a more practical solution can best be summed up in the outcome of another incident by 6 words of one of the staff members on duty at 2 AM: “whoops sorry, I forgot about you.” Needless to say I had some  oh so kind words with him and the manager for that one!  While I will  admit that I need to make these compromises because I choose to live in a unit that suits my needs rather than one that doesn't on the ground floor, I'm saying there needs to be more dialogue about a faster, practical way to get to the person that needs help, while using the resources available, say, like, the 200  other residents of the building. Because, you know, there is a chance that I just might want to stop, drop, and roll out of the building just like everyone else.

Wednesday, July 24, 2013

S**t My Grandma Says

Yes,  I thought  she would appreciate this title. Those of us young whippersnappers know that it is indeed a play on words from a series of YouTube videos about things that various groups of people tend to say. If you don't, look it up! And yes, she approved and even encouraged the publication of this post, so here goes, I'm trying.

In my current situation, I am fortunate to be able to spent a fair amount of time with my grandparents, which can lead to some pretty interesting conversations, and often, my rambling about  various topics, sometimes even for several hours. Here are  some of the ones that have come up recently:

1. You need to lose weight  to make it easier for people to help you,  and for you to help yourself.

While  I see and respect  the validity of this concern, it is not my primary priority to do that to make it better for other people. I see this added benefit, definitely. But that does not come first.  If a doctor was remotely concerned about  my weight, which is not the case, then I  would have something to consider. I do, however,  express the desire to be more active, now that I have more time to do so, and now that I'm not eating  cafeteria food or take out all the time. If I  help people in the process, then great,  but I am not going overboard here. I think one of the main problems is that people who are not often  upwardly mobile  have to be very careful because any small amount of change in our bodies is more easily evident  than it would be when talking about a non-disabled  counterpart.

2.  I  don't understand this whole  ableism/audism thing you keep talking about. Why  is it bad to want to walk, or hear,  or  whatever? Who wouldn't want to do that?

 Sometimes I don't understand it either. I  just learned about it probably  a year and a half ago. I don't think that  wanting either thing is inherently bad, I think the point of these ideologies is that these 2 things cannot coexist peacefully due to the power dynamic that we have. There must be some form of domination or oppression happening,   and that's the part where things start to become unacceptable sometimes. Our backgrounds  often cause us  to think that because  we were brought up in a certain way or we do (or don't do) things a certain way, that we are better or worse off than somebody else. Because we don't live in utopia, this is inevitably true.  I admit that even I am still learning about this, and I'm not the most perfect, or PC, person. Occasionally, I do still use some ableist language that I know I shouldn't, though never in direct offense to the particular group they are referring to. I am striving to find  better ways to communicate frustrations that don't include anything derogatory to any individual, but I can't promise that this will ever be completely removed from  my vocabulary. I strive to be the most respectful person I can be, but with so many different view points, conflict is inevitable sometimes. Let's face it, I'm human, sometimes I laugh at jokes. If I have personally offended or insulted anyone in any way with the language that I have used, please let me know and we can have a conversation about it.  That being said, I think we all have our ableist moments sometimes, I know I do, when every once in a while, I struggle  across a room in my walker for the sake of mobility and exercise, and so that my legs don't simply just wither away. I realize  that this is not important to some people, while it is a priority for others. Perhaps over time, it will become less so for me, but only time will tell. Even I have to learn to respect other people's different ways of doing things, and not let them influence  me unless I want them to.

3. You worry about everything too much.

  Yes, I do. So much so to the point that I finally gave up and started this blog or my head was going to explode. My parents  and family  have always informed me of  of the extra steps and loopholes that I would always have to go through my entire life just to do what everybody else does.  I know that I'm in  an incredibly unusual situation, sadly enough. Because of this, I will always have these other things on my mind, because I'm also thinking about how I could end up just like the rest of us, or what I'm doing for others that don't have this chance.  Now how  I choose to deal with this is another story entirely. So I figure, instead of  procrastination,  I may as well make myself useful, and improve my language skills while I'm at it, which also usually coexists with listening to some type of upbeat music. To those of you who say “but you're such a happy person, all the time!” I say you haven't lived with me, or  heard one of my rants.  it's true.  Just ask one of my  professors last year, during a break, I went into her office and went on a 45 min. rant about feminism, psychology, and ableism.  (If you're reading this, I apologize profusely, and thank you!)

4. Stop  being such a pessimist!

Also true.  From the environment that  I am surrounded in, I always tended to focus more on the negative aspects, or the complications of things that I'm doing. I realize that since I'm in a “special”  situation of being academically gifted, but sometimes needing day-to-day physical assistance, the support systems designed for “people like me” were not in fact really designed for people like me, who have goals for upward mobility, to make their own way in the world with a  gainful career in a field that uses one of the many skills that I do possess, in addition to needing help because I am physically disabled. These 2 things do not often come hand in hand, and some people think that they shouldn't.  I completely  disagree, and have to  figure out many things  as I go along.  As I've done that, I've encountered a lot of complications and changes that need to be made, some of which  make me downright angry. I also know that there are a lot of people in the same boat,  striving to advocate for change in many of the same ways. So, even if I do try to relax a little and have more fun,  to those that say “the only disability  in life is  a bad attitude,” I beg to differ.

Saturday, July 6, 2013

Let's get it on....or....not!

Extreme TMI Warning: Some explicit content!!! If you don't like, don't read!  I  promise very few of my posts will be this way.

Hi all,

Sorry for the long hiatus, I've had a lot of ideas  spinning around in this head of mine. And it's taken me a long time to work up the guts to let this one out. I'm bracing myself  for what may come. I promise a wide variety of posts in the very near future. But first.....

 I would like to address several articles that have come about recently, some of which have  intrigued,  perplexed, disturbed, and outright enraged me.

 Let me start by saying  that I realize that I am “different ” from the people depicted in these articles,   that I will somehow never be like them, and some may not believe that I have the right to speak on this issue. I do respect the concerns of other parties who may be involved here, both for themselves and for their children. I have no doubt that it is extremely stressful to worry about another person's well-being constantly, even as my own family does. But sometimes, it doesn't matter that I'm not like them, because in a way I am. That is not me, but all that matters is one difference and  it could have been, or might be in the future.  I am lucky to  have been given the choices that I was.

 First, there was this story that circulated  around various press outlets a couple of months ago. While I respect people's concerns for this couple's safety, awareness of their environment, ability to consent, etc. why, then, were they considered aware enough of their surroundings  to be given a marriage license?  Not that I'm saying  they shouldn't,  as I believe all people are capable of loving each other,  as is very obvious given the couple's comments here, but that is another story.

Note that the couple made no direct mention of making babies,  they are simply asking to live together as husband and wife, something that most people in this country are able to do. However, this is still a fight for many groups, including many people with disabilities. The facility claims that they would not have the necessary facilities to “supervise ” the couple if they were allowed to live together, because, you know,  the first thing  that they would do  is rip off each other's clothes and have a million kids that they can't take care of. Because two HUMAN BEINGS passing on their genes is unacceptable. Not to mention  awful, horrible, and grotesque to watch. Never  mind that they have  not a clue what they're doing. (For those that don't know me, please note the sarcasm font)

 I'm sorry, I always like to think that people understand much more than they're given credit for, no matter how they communicate.

Now,  I do realize that not everyone may be “able” to have a sexual relationship in  the “traditional” sense, whatever that means, or they may not want to, and that is just fine, because that is their choice.  But telling someone that they  can't live together based on the choices that other individuals assume that they're going to make is not a choice. It is infringing on their rights as a HUMAN BEING first.  I am saying something because a lot of these people don't often have the choice, or are so often made to feel as if they don't.

 But, you have the mental capacity to make decisions for yourself! So what does this have to do with you?

Well, a lot. If  I had a dime for every time someone has asked me about my  ability to reproduce,  I'd be a gazillionaire. First of all, It's none of their business. Second of all, if I did said activities, some people think I need to be supervised while doing them. In my case, the answer would likely be a firm NO! Third of all, this uncomfortableness with the idea has prompted some facilities to regulate the activity of other residents that live in places like these, even when their mental capacity is not called into question. So, for example, depending on the location itself,  if I ever had to consider staying in a group home situation, based on availability of accessible housing, I could be told what I could do and with whom in my own house, when there is no question that I have the right to do so, simply because I may live with other people for whom this is called into question.  Or maybe  simply because it makes the staff uncomfortable.  Now that  is just all around insulting, not just for me, but for everyone involved.  I realize  that I'm very lucky to not be in this situation, but I think about it an awful lot. That could be me......

Then, there was this one, which made the rounds more recently than the last.  I, for one, have no problem with what is being described,  as the people here obviously have very clear ideas of what they want, and are only seeking physical help in initiating the action. Now granted, I can see potential for foul play, and perhaps have more thinking to do about where the line of control lines, but I  fully support the idea that these individuals can have a relationship in whatever way possible that they desire  and that the theme of universal acceptance is being promoted.  Societal norms often tell us that severely physically disabled people can't or shouldn't have a normal  sex life, because they need to be “taken care of.” This  type of ideology seeks to change that.

Lastly, this. Ah, yes,  the sterilization of women with disabilities because they don't know what's going on at that time of the month.  Now, I do not intend for this to be a generalization, but from my own experience, the majority of people that I have interacted with that have intellectual or cognitive disabilities may get extremely upset when something changes in their  routine, which   their everyday lives sometimes depend on quite heavily. Now, again, I like to give people more credit than your average person when it comes to the ability to understand concepts, because I've seen it happen in many other cases.  If there was blood  coming out of me and I wasn't told why, I would probably  throw a tantrum too!  As someone mentioned in the original posting of this that I read, there was no mention in the article made of  any type of intervention by a doctor or occupational therapist to help the young lady adjust to what was going on, and the parents stated that sterilization was the “only option ” for the daughter.  I was informed of what was going on  at a very early age and received input from a variety of  professionals.  I know full well that it can be cumbersome  and bothersome to others to deal with if you need assistance, but I was fortunate enough to have the choice of something less permanent than I can choose to stop when (yes, when) I want children. Again, I realize that I am not “those people", so why am I even talking, because there are parents that have to deal with this day in and day out. Why, if their child will never have children? My answer, how do you know?  New things are happening every day. My biggest concern is that this is often done without any effort to inform the individual? Because,  why bother, we're not "those people,"  they'll never understand. Actually, I do understand. But, see,  what I don't understand is how referring  to us as different, as “other” somehow makes these things excusable, I just don't.

 I have been told by multiple individuals, strangers even, that people like me should not have children. Even from the well-meaning ones who completely support me, I receive an  endless barrage of questions about how I will care for my child. And not without good reason, but still, not knowing that terrifies me to no end. If that wasn't  frightening enough,  let's add in the many cases that I hear about  in which children are taken away from their disabled parent(s) or  the parent(s) are deemed  unfit to care for children. If  that isn't good enough  birth-control for some of us, I don't know what is. So, in  the end, just because I can doesn't mean I would be stupid about it. (my family can breathe now!) It will involve a lot of thought and careful planning, as well as probably a lot of time to get over my own self-consciousness and societal expectations of me. So nobody has anything to worry about any time soon!

Wow,  I can't believe I just posted that incredibly long and personal insight. As always, I welcome any (respectful and civil) comments below!

"Après moi, la déluge."
(After me, the flood.)
-Regina Spektor

Thursday, June 6, 2013

A Different Kind of Powerball

Hey all,

I'm  just going to leave this here as I continue to create a portfolio for my digital journalism work.   As we like to say, I hope this gives you a new insight into boldly  going  where every man (or woman!)  has gone before.  Full disclosure: I am somewhat involved in this program, but I chose to talk to people that I hadn't spent a lot of time with. I hope you enjoy!

A different kind of powerball
By Hannah

Picture the all-too-familiar adrenaline rush that comes with  pounding a soccer ball straight into the goal. Now picture a game of bumper cars. Put the two  together and what do you get?

  Founded In the 1970s  by a couple of innovative teachers whose students didn't have the gross motor skills to play traditional soccer, power soccer (or  powerchair football, as it is internationally known) is a competitive sport that combines the techniques and strategy of the  athlete with the maneuverability of his or her power wheelchair.  Athletes who play power soccer  may experience a variety of disabilities including, but certainly not limited to muscular dystrophy, cerebral palsy, multiple sclerosis, spina bifida, and traumatic brain injury (TBI)/ stroke.  For many of the athletes, such as Kris Napper, this is the first time they have ever gotten to play a competitive sport.  Napper  has been playing with the Tacoma Rolling Thunder for about five years now, and just recently joined the newly forming Seattle team, unofficially dubbed The Thinkers.

 A game of  power soccer consists of four players on each team who all use  power wheelchairs. In professional play,   there is a classification system that assigns each player a certain number of points based on his skill level or motor ability. During any given game, only a certain number of points  can be out on the court at any one time, so as to ensure that one team does not have an unfair advantage over the other. Players   then try  to use  their chairs to roll the ball, an enlarged  13 inch version of  a soccer ball, into  the goal against the opposing goalie, similar to traditional soccer. There are two governing organizations that oversee official gameplay here in the US:  United States Power Soccer Association  (USPSA) and La Fédération International de Power Football Association (FIPFA) which is based in France.

 There are two  big differences to be seen between traditional soccer and power soccer: the equipment and the venue.  Power soccer is played on an indoor basketball court on a relatively flat surface, so as not to damage the chairs with inclement weather or any other environmental barriers. Since most athletes need to use these  chairs  in their everyday lives, it is essential that they be kept in working order.  In a similar way, there is a different method of moving the ball around so as to protect the athlete, known as the guard.  The soccer guard is usually a metal or plastic device that goes around the front of the chair, so as to protect the athlete's legs and feet, similar to a cow catcher on the front of  a train.  The player uses the surface of the guard to move the ball around the court. Even though it is a noncontact sport, collisions are inevitable, and sometimes  things may get a little high-octane.

 When  asked what's in store  for this new Seattle team, head coach Caleb Hecker remained optimistic.  He pointed out that  every  athlete has made “undeniable” improvement, and envisions quite a bit of expansion  for  the future. This team, a program of Seattle Adaptive Sports,  just started earlier this fall. Hecker envisions a considerable  increase in players within various age groups so that a competitive team may be formed in order to scrimmage against other teams and possibly move on to a higher level of play.He acknowledges, though, that this team is just getting started. Perhaps as a consensus among athletes and coaches,  one coach put it best when he said that power soccer “really is a lot of fun.”

Additional source: United States Power Soccer Association

Wednesday, May 22, 2013


 Okay, so of course I have to be a little bit contradictory. After everything stupendously wonderful I just said about Deaf culture, I must admit that music is a huge part of my life, I don't know where I would be without it. I'm not saying that those who can or can not experience music in the same way are somehow any less than, or do not have a better life. I'm simply saying that everyone has a medium. And this is mine.

 Music has been a huge part of my life.

 Music  has been therapy

  When you can identify a song that is so  in tune with your exact feelings,  you know  it's a part of you.

 For those of you who don't know, I sing.  I can sing. I love to sing. I need to sing. I think this song sums it up pretty well.

 For those of you  who want to know what I must always   have  playing, you can share this.


Dear X.....

 If you read this, I think you are smart enough to figure out who you are. And you're welcome. 

Dear X,

 Friends  often don't know how much little things matter.  When I met you  earlier this year, I certainly didn't. 
 I didn't know  how much it would matter that you can always make me laugh. Without fail.
 Although you may not  understand everything, you understand some things about me in many more ways than one. We speak the same language, several as a matter of fact, and you really have  accepted me to the point that you can.

 I also know that you are  a selfless human being, and also just that, a human  being. Every single time I ask for help is not without gratitude and understanding. Yes, I am frustrated, because my situation is frustrating, not because of you. 

 You are tired, I can see it in your eyes and in your head. I can hear it in your words. We come under stress in very similar ways. It's really none of my business what you are worried about, but that is when I think you understand something that you don't realize.

 Whether it be from a multitude of other things, or from working long hours of stressful, thankless work, I think you now understand why I work so hard to live my life the way that I do. Because you live the alternative. Now I'm not saying that this place  does or does  not  treat you well, but I've heard many stories, I've seen it, I've been there. And that's why I can never ever bring myself to do that. As “safe” as it may be.

 “ You have 5 minutes, go help this person, go now.” I know this is what they say, and  I know that you know this is not what they deserve, because you, too, are a human being. You want  to treat them like one, but you can't, you don't have time. And you want to be treated like one, too!

 It makes me want to cry every time I see you, or don't see you, so tired that you can't fucking hold your eyes open. You may not think I notice, but I do, and  I know why.  You are doing this to help the people, but also because you need to. And for that, I don't blame you at all. After all, I've always said, “come work for us and be treated like shit”  is better than “ hey, come hang out with me and make crappy money or no money at all.” This is the sad truth, and I know it.

 When you met me, I wonder if you thought  of me as one of them. I wasn't some decrepit old person that stays in the senior center, I am a smartass who likes to live it up just like you do. I wonder if that has changed now. Do you see me as  dependent, lazy? Needing to be supervised?  It kind of hits you when “those people” are just like you, doesn't it?  When they are the ones in control, as it should be.  You understand.

 You understand that I'm tired of seeing amazing people like you broken down to the point where they can't take it anymore, and we, as a people, will suffer.

 You understand that there are few people like you out there. People just don't care. They just don't.

 You understand that I am  more than sick of this being about money, and not about people. If I had $25,000, you understand that I would give it to you in a heartbeat, because that is what people like you deserve.

But, unfortunately, all I have to give you  is my sincere gratitude, sarcasm, and maybe a few corny jokes along the way. You understand that, too.

 You have always been honest  with me, and I know that if you see this, you will tell me the truth. That's what I like about you.

 But for now, I just need you to understand that you are appreciated.

 Understand that you are loved.

 (For the record, I wish I could write  awesome pieces like this as an ode to everyone,  but for now, this one had been looming around for about the past month so I had to start with this)  :-)


Quiet Mouths, Loud Hands

The purpose of this post is twofold: to give some reflections on this and this, and to put a whole other spin on it that is more related to my own personal experience.

 First  of all, I'm not autistic, but I know many people who are, and they are all awesome.  Second  of all, I've  seen these types of tactile techniques used on many other people, including myself for muscle stimulation in various other ways. So  I have several issues  with it in that regard as well.

 While I understand  that the principal behind this is all well and good to teach people the more “appropriate” times to touch things, I feel like this could be taken advantage of to stifle communication and interaction on  so many occasions. A very good friend of mine always fidgeted with his hands on the desk when he was nervous  in school. I never understood why all the other kids moved 50 feet away from him. That's just what he did. I remember one day when somebody yelled at him for unconsciously fiddling with their pencil. He put it back and apologized, but this person took it as some kind of personal violation. I was amazed.
 So basically, autistic people are awesome, and I'm so glad that they, not so-called representatives, are speaking out for themselves in various ways.  But this first  post brings up a whole other set of issues to me.

The Quiet Hands philosophy  ignores a whole other form of communication. Sign language!

 At the beginning of this school year, after  a renewed interest in the last 2 years, I decided to officially learn ASL. Now, you're probably thinking “why the hell would a person with extreme spasticity and motor planning issues ever want to do that? The answer: Because it's fun!

 Okay, well really that's only half the answer. The other half has to do with the fact that I have met a lot of nonverbal  kids and adults who could hear but used a form of basic signing to communicate. I had been around it for quite a while in the SpEd classrooms  and I wanted to learn more.

 A lot of people, myself included, always have preconceived notions of culture they know nothing about. Not knowing a lot about the history behind these people, or, well, really anything else except for the alphabet, I decided to learn about this culture in conjunction with the disability culture, when, as previously mentioned, I started working at only the 3rd funded student-run Disability and Deaf Culitural Center in the country (you can learn more about us here). What I did not expect to find in this new world was discrimination,  ableism and later on,  even, respect and support.

 When I first started, the instructors wanted to know something along the lines of my initial question: why would somebody who has problems moving their hands even want to learn our language? She can't succeed in this class. Ironically, though, the thing that I thought would be my greatest defeat is now actually one of my strongest communities  here . Although it is a mixed group of students (hearing, Deaf, hard of hearing), our ASL Club welcomes anyone to learn about the culture.   If you would've asked me a year ago, I never would've said that some stupid school club would have acted like a family, both within the field of study and elsewhere. This has influenced me so much so thanks to a recent lecture that I attended on the evolution of Deaf culture that I am currently considering minoring in ASL and Deaf Studies, and learning more about the intersections of the Deaf and disabled labels and marginalized oppressions.

Although we come from different histories and sources of pride, there is a lot we can do to collaborate together in our advocacy and try to bring an end to ableism and audism.

Besides all of that academic mumbo-jumbo, do you know how cool it is to know that someone understands you and supports you without ever having spoken a single word to you? It's pretty freaking cool!

   So if your question is: Is she having a seizure over there  in the corner by  herself?  the answer in my case is no,  I'm probably just practicing signing, having a conversation with myself, or someone I know.

 Yes,  my hands are very loud.  Deal with it!

 PS:  This post  was somewhat inspired by a short film that we screened this weekend about what it would be like to be the last one in a culture. This hit home in so many ways. To watch it online, go here.

Tuesday, May 21, 2013

The First

The first infant in the state to come home on a Broviac catheter (jugular feeding tube)

The first in my preschool class to read chapter books

The first SpEd student with physical needs in the gifted program

The first medically fragile "child" who receives specialized services to leave the state to  pursue higher education

 One of the first student  staff at only the  3rd funded disability cultural center in the country

Why am I always first?

 Being first makes it seem like I have some idea of what I'm doing. But actually, I don't. At all.

 You're such a pioneer, a trailblazer, paving the way, is all I get, more often than not. Everything I sit through and put up with is supposed to make things better for somebody else.

 Apparently I just  go through  the world radiating confidence or something, because I always get the “I wish I were you” bit. Really?  You want to stay  awake at night because  you can't when you feel like literally everyone is watching you, keeping track of you. Why is she doing this? Why is she doing that? She needs to know what the next 10 years of her life are going to entail, what  kind of help she will need, and she needs to figure it out right now!!!! You want to get so upset that you get physically sick about deadlines and phone calls that no reasonable person should ever have to make? Well then by all means, please go ahead, I could use the weight off my shoulders.

 Contrary to what some of you may be thinking, I am not always first because I want to draw attention to race, class, gender, orientation, hearing  status, ability, perceived intelligence level or anything else. I am first  because I believe that it's wrong that people can't do whatever it is  that makes them happy, and maybe because I have the balls to not let go, yet, today, at this very moment, some days. Who knows about tomorrow.  Sometimes I wish that  being first  came with a manual, a mentor, or at least a partner in crime.  I'm lucky to have  at least one of those things.  I guess somebody's got to be first, right?  So it might as well be me.  Again. For the millionth time.

Blurring the Lines

You can't, you can't, you can't

You can't

 Or can  you? Will you? Do you want to?

 But really, you need to, it will change your life!

 These are the words that have been playing in my head ever since I can remember, but especially over these last few weeks, as I have dealt with physical issues that come with the “aging” of CP.

 I always knew that it was a thing, but  it wasn't until the last year or so that I started to learn about the complexity that is the medical industrial complex.

 It's a parent's worst nightmare learning that their kid  is “defective”, will never be “normal”, will never do the things that they do. So naturally  there is a whole money-sucking industry based on  giving the child the best “quality-of-life,” making them the most “functional” so that their lives will be “better.” God, I hate those words.

 While I do not regret the choices that were made in my own best interest when I was younger, it does strike me that as said children grow older and become independent (wow, cripples  can do that?? I had no idea!),  that these choices, treatments, braces, needles, doctors, often begin to conflict with the identity  that they begin to develop for themselves as a human being. I know that this is certainly true in my case, as well as for many people I have encountered over time. They slowly, very painfully begin to accept themselves and become empowered in the way that they are. It is not always true, nor is it always easy. It is a process.

And then, there is the  “real world,”  the one that seems to revolve around two things, money (we all know what that is, you know, the stuff that grows on trees) and ableism  (the idea  that being able bodied and physically capable is the normal way of being, and that anything else is, well, wrong)

 Some people in this real world do not realize that we are still here. We will continue to be here, trying to live with the challenges and conditions that we have been given. They are not magically going to go away after some  evaluation, or writing on a piece of paper. Or are they?

 See, that's where this other thing called  money comes in. Some people realized that they could  make a lot of money if they tried to help make us better, to make it all go away.

 You ask, now why is she rambling about this for  three pages? Oh honey, that was just the background…

 My point…

So, for a person like me, it becomes all about management, of risks, benefits, spoons and many other things.

 “ You can't walk, you're not functional.”
 “You need to exercise and weight bare  or your muscles will atrophy. We can't help you here.”
 “ You need to lose weight.”
 “You should stop doing that, it's too much for your knees.”

  All   great advice, but  don't you notice a Catch-22 here? If I sit on  my ass and  do nothing, I will become older and stiffer, and that it is not a specialized skill, which therapy can help with. If I do, it's always something that I shouldn't be doing. In today's world, you can't do something just because you want to, there has to be continual progress, or it's not good enough. Although I want this progress for myself, I realize than it's impractical, it's hard, and sometimes, it sucks, but walking is probably the most rigorous workout in all my muscles  that I get, just trying to cross the room. Yes, this is my own internalized ableism and spite talking, but sometimes it feels damn good to say I can.

 But alas, it's not “progress”…

So this is where I stand today, but wait, there's more!

 “I really think you should get the pump. It will make your life so much easier if you can, you know, move your legs.”

The intrathecal Baclofen pump is something  that my family has been made aware of for at least 10 years. Basically, it pumps small doses of an anti-spasticity medicine continuously into your spinal column through an implanted device, supposedly making you more limber. I took the oral medicine many years ago and it  gave me what I affectionately like to call a “Baclofen hangover,” basically there is so much medicine in your bloodstream that it turns your brain into a zombie. This new option would seek to alleviate those symptoms. Will it make my life “better”? I don't know. All I know is that I dread the day when I can't  bend anymore to move myself in my chair, or stand up from bed. However, I also dread the day that the medicine takes away the only strength that I know and leaves me unable to do these things, like a lump  in a wheelchair. Yes, I know that the final results probably won't be this drastic, but…

 Why is she getting this medicine willingly injected into her spine in large quantities?, you ask.  She's just fine the way she is, why doesn't she just accept that?

 Sometimes, I wonder that myself. For now, the answer is to see how it will affect me. The doctors say that during this test round, I should basically be prepared to lose all the muscle function that I know. That thought in itself is scary as hell. Yes, I know the final results will be more finite, but…'

 Am I contributing to this medical industrial complex? Why yes, I am. Where is the line between making yourself “better” and accepting yourself  just for what you are? I don't know. Where is the line between autonomy and dependency, on drugs? I don't know. Where is the line between human and machine? I don't know. I live in a  shade of gray.

Monday, May 20, 2013


I never thought I'd see the day……

"You should write! Why don't you write??”
 “When  is that best-selling memoir of yours coming out?”
 “This needs to go viral. Like, NOW!!!”
 “ Somebody  needs to know about this!”

 Yeah, yeah, yeah. Well, here I am, on the big, bad, ugly World Wide Web, so you all can put a sock in it. Don't like it? Then I would urge you not to read any further.

  So, let's back up a little bit…

 I'm Hannah, a college sophomore  temporarily transplanted from the Last Frontier  to the Emerald City (and who knows what the future holds!) as I work on my B.A. in journalism and explore many other worlds along the way.  I have moderate to severe cerebral palsy (whatever that means), and while it does not define  me completely as a person by any means,  it has a large part in understanding who I am.

  While this will mainly be a blog about my personal ramblings and experiences, I will do my best not to complain, and to compose thoughtful responses. No guarantees, though! I will say that this is real,  in most cases  it will come straight out of my head onto the screen. I will do my best to filter myself appropriately, but it's in the blood, after all :-)

 I will attempt to write about things that matter to me and things that will be of interest to you out there in reader world. These are just things that come from living life itself,  not inherently inspirational on their own, just real, simply experience.

I write because I can,  because I need to, and because I should. I hope you'll  stay along for the ride!!

 I always welcome your feedback and suggestions! Feel free to leave comments  and please bear with me as I set up this site! Thanks!

 By the way, the pieces posted before this were written previously and I was told they should be put out there. I will be working on some original work in the coming days :-)

All because of a knife.....

All because of a knife.....

A post that I wrote as a reflection on the events of Easter

My apologies in advance, I don't mean to offend anyone currently in this situation.....

Today, I had the opportunity to go to Easter lunch at an adult group home, as my caregiver today also works there sometimes, and was invited to several parties by friends and coworkers today. I said I wouldn't mind going, so she chose this one because it was closest and most accessible. 

All the people there were really nice and really happy to have me, and the old people were great, but it was really awkward because I didn't know what to say to them. They seemed oddly content just sitting inside watching TV on a beautiful day! When we were eating, all our food was spooned out individually and nobody tried to serve themselves. I was asked at least 6 times if I needed help cutting my food. I said no and still tried to cut it with a fork, which took a bit longer but I did it. Then the other lady told my caregiver to stop helping cook and come cut my food, even though I didn't ask her to. When she said "she doesn't want that" she said "well obviously she can't do it herself, she's probably embarrassed, I would be, too!" So she brought over a knife and was going to cut my food, and I said I'll take that and promptly cut my own food (much faster) with the knife.

Then while the old people and I were visiting, my person was talking to her coworker in the corner and was explaining how I receive services and scholarship and stuff. I wasn't so much concerned about this information as the fact when my caregiver said "Ask her, she'll tell you all about it, and I looked over, ready to respond because I knew they were talking about me, her coworker said "oh no no" in a hushed voice like they weren't supposed to be talking about that in front of me, or that I wasn't supposed to know what was going on. 

I'm sorry, but I don't live in a world where I'm told when I can eat, shit, sleep and go outside, and I'm going to work very fucking hard to keep it that way. I may need some help with some of those things but that is directed by me, not you. And no, of course you just didn't tell a resident that she can't take a nap because you don't feel like helping her back up, and when she said "That's ok, I'll do it myself" she was not "allowed" to do that. 

Being here today really made me miss my great grandma and auntie, both of whom passed within months of being in a facility. They are (still) two of the most stubborn mules I know and would not put up with any of this shit. Great Betty said it was like prison, after living in her own home for almost 93 years, and Anne ran away from the facility after losing a lot of her decision making skills from a stage 4 brain tumor, but she was adamant that she would die in her own home, under her control. She was the one who taught me how to advocate for myself, and is still one of the most badass people I know. I sincerely have no problem calling her my hero. I know some of you have had to deal with this out of necessity and I suppose you get used to it, but I support you in solidarity of making change for a community based system so that we can take control of our lives. These people may be old and forgetful, but they ain't stupid! Breaks my heart! Miss you guys so much ♥ ♥ Just writing this brings tears to my eyes. RIP ♥