All aboard the struggle train…...

      And so,  almost a week ago, we departed from the fabulous folks at YHA and went on to meet our host family. It is not really a host family in the sense of the word, because I had to find my own accommodations, but nevertheless they have been extremely gracious in dealing with our unique way of doing things.
      This journey would require  a trip across town,  and  when I was looking up the options, the least convoluted and easiest thing seemed to be a journey on the Underground- the Tube-- why not?  And since  our host had looked up the directions for step free access, we decided to give it a try! We now know just how very wrong we were.  Granted, it would have been simple enough if we were not packing 4 bags around… or so we thought.
      You see,  despite the incredibly detailed and confusing labeling system that the Tube has for different levels of accessibility,  you never actually know how big the fabled “gap” is, or which part of the journey itself is, in fact, accessible. It varies from stop to stop, and I feel like someone should just go through with a pencil and mark each one. Sometimes, the gap is a foot tall, and sometimes there is not  one at all. In our case, it was where it said there was a lift (elevator) out of the station itself, when there was not. So, about 6 trains and switching directions later, we finally decided that we had to take an alternative route on the District line. A staff member was gracious enough to help me onto the inaccessible (of course!) older trains. When we got there, we went the wrong direction to the next stop, and then also went the wrong direction on the next form of transportation. The problem is, when they marked the routes, they actually give you the name of some random stop  on that line, not the end of the line, not even the next stop  or the middle of the line. If somebody could enlighten me as to the naming of the directional system, that would be greatly appreciated! So, about 4 hours later, we arrived here at the B&B, but not before someone yelled at us for fare evasion  because we didn't realize that the cards actually timed out after 2 hours,   while our journey ended up taking twice as long. This whole experience made us both want to buy a certain  souvenir T-shirt and replace it with something a little more accurate!
      Needless to say, the struggle  has not only been physical, but metaphorical as well. One of my instructors kept talking about the fact that there  would be cultural overload within the 1st week. Having to plan for many situations, I knew that there were a lot of things that I would be thinking about during this time, including but not limited to money, energy, accessibility, geographical location (I'm horrible with directions) and getting used to the notion of constantly being around other people. Now, granted, you'd think that since at any given time, I might have no less than 4 people trying to hover over me, that this would not be a problem. But usually, in this case, I would pack a pair of headphones and turn the volume up so loud that I couldn't even hear myself think. But, alas, my wireless headphones died before the trip and I elected not to bring them. Having dealt with so many different types of people, you would think I would have learned a thing or two by now about how to do it. Sadly, that is not the case. as in this situation, when all involved have no idea what the hell they're doing, the difficulty lies in many facets, from my traveling narcolepsy (yes, it's back) to the different foods, to the way my friend asked me to do things.  Throw in some sign language  and some sometimes comical interpretation fails, and you have a little bit of an idea. Sure, I thought, going with someone I knew would be easy, no problem! How about no. In a situation like this, I didn't realize I was stressed about things that I didn't even know I could be stressed about, such as my doing things almost entirely separately from the rest of the group for the 1st week. I didn't realize how  upsetting that was to me, as it is something I usually deal with  on a daily basis. So if you think that you can go with just about any situation, think again, you don't realize how many factors are influencing you at any one moment.
      As  far as the courses were concerned, I finally got a chance to  meet the other 2 professors, both of whom are very considerate and very hilarious.  This week focused mostly on our class about art and architecture, where, as one of the professors said, ““If the Victorians didn't like it , they took it and shoved a bunch of crap on the front of it.” This pretty much sums up most of the buildings in London. I have probably been able to see more sights in the 1st week than many people would get to see in their entire stay, complete with authentic Brit commentary. We have been to most of Central London already. For me, the highlights included going into some of the most incredible churches and learning about the history behind them. We visited Temple Church,  the church of St. Bartholomew the Great, and I even attended an evening service at Westminster Abbey. My great grandma  would  be so proud right now.  Honestly, there are too many things that I have seen to list them all here, but I will try to go back and get pictures of some of them as time allows. I hope to be able to post a more extensive list here.

 Until next time!

A hop, skip, and a jump (over the pond!)

Hello all!

 As promised,  I am finally taking some time to update you all in reader world out there about our adventures so far!  As many of you know, I am now abroad in London, England, actually  earning credit to be able to see some of the most spectacular architectural and theatrical productions that  Europe has to offer. Over the next few posts, I hope to give you some highlights of how it went down. Unfortunately, we are still technologically challenged with my camera charger, and hope to find the right one today. I am so disappointed, because I've probably seen more sights this week that people would give their front teeth for  than I have in my entire life, and I'm not able to share them with you (yet!) On the bright side, I do have some footage on my video camera (now I just have to figure out how to charge and upload the damn thing!)

 I'm happy to report  that the flight over was rather uneventful in itself, thanks in part to our fabulous driver (thanks Gram!) Other than it being delayed for half an hour, there were no other problems with the airline service (thank you universe!) We even scored seats literally right across from the bathroom, which was a definite plus.  The only downside to this was that these seats did not recline at all, which made me a very unhappy panda after about 5 hours. You would think that, being a wheelchair user, and being used to sitting 15+ hours a day that I would be used to it, but for some reason, this was not the case. I'm curious to know if anybody else has this experience on the plane. Usually, I'm fine for short flights, and have been on long plane and road trips before. Luckily, my friend and traveling companion  was a saint about it and didn't mind me waking them up periodically. Finally, we arrived (mostly) unscathed at our destination.

 One last thing on the subject of airports, I must say that the airport staff in the UK really has its stuff together! My chair was off the plane within 5 min. of arriving at the gate, and there was somebody there to guide us to the next place we needed to go!  When I applied for this program, I remember one of the support services people telling me that I couldn't rely on the kindness of strangers, but I still find that almost without exception, every person we've asked when trying to get around has been extremely knowledgeable and helpful. Or, if they are not, they know someone who is.  Unlike in America, where if anybody saw us trying to navigate the airport with 4 bags attached to us and my chair, they would just stare at us like we had 3 heads and keep going on their  merry way. Indeed, not so here!

But, you don't want to hear about that…

 We boarded the train, and took a scenic ride into the city, arriving at St Pancras International Station, which is a majestic building in itself, made of red brick, ornate statues, and a clock tower.  I have since learned that  it's probably Victorian, but that's another story for another post.

  Our destination was right up the street.  The folks at YHA were absolutely phenomenal. Not only were they able to tell us where to go, they even helped me with some navigational issues, and some things that I needed to buy upon arrival. They were even able to find me an accessible shower seat within about 10 min. so I didn't have to go buy one  right away. The people were super friendly and didn't  laugh when we asked stupid questions like what is the VAT? (Answer: the British  sales tax). Even though we stayed in a shared room this time, the facilities were much nicer than what I expected. After recuperating, we were able to browse around the local area to find food and things to do the next day. The Camden town Sunday market was a lot busier than I expected, although it was very touristy, it seemed to be the kind of street that was bustling all the time. We were also able to see Regent's Canal and the locks. The day before, we had gone to the usual spots like Piccadilly Circus, where we found a group that was breakdancing to "Gangnam Style." I have since discovered that this is indeed a daily occurrence. Overall, even though we didn't do much, I can't wait to come back at the end of the trip to stay in this area.

 Onward to the next phase of the journey!

The 10 worst (or best!) pick up lines to say to disabled people

This is a piece that I just wrote for class, and I'm actually so excited to share it with y'all! Enjoy!

The 10 worst (or best) pick up lines to say to disabled people

I have to admit I don't have a lot of experience in this area, and here might be some reasons why. Keep it classy, America!

1.     But… you're so pretty (for a person in a wheelchair)

Yeah, because of course our hot rods can’t be sexy.

2.     So, what exactly did you do yourself?

Oh, I don't know, just intentionally strangled myself or fell on my face. And even if I did, what's it to you?

3.     Hey, Speed Racer *wink*

Hey Batman, Power Ranger, or My Little Pony. You know, whatever floats your boat!

4.     How fast does that thing go?

Maybe about the pace of a small child. But still too fast for you to keep up with me.

5.     Do you do all your own stunts?

No, I'm faking it and, they paid Angelina Jolie to be my stunt double. (Hey, they don't call me Evel Knievel for nothing)

6.     Need a place to sit?

Somebody said they got this from a fellow wheelchair user. Really??!!!

7.     Wanna ride on something other than your chair?

If so, you just lost any chance of finding out. Or, sure, let's ride a mechanical bull and see what happens.

8.     I don't know how you do it!

I wake up, I breathe, I ingest copious amounts of caffeine, I procrastinate, and repeat. But OH MY GOD. You went to the grocery store. You are such an inspiration!!

9.     But you don’t look disabled …..

And you don't look regular, Mr. handlebar mustache with comb-over, and yet here we are!

And the most overused line EVER

10. So….. I probably shouldn't ask this, but, everything works……..right?

If I had a dollar for every time… then by golly I wouldn't have to sit around eating bonbons all day, and maybe I could actually pursue a career. Imagine that!

 -------------------------

  I know these are somewhat specific to my experiences. Feel free to comment with your own best lines below!

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.


        White

·      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

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........

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 Change.org to stop the payment of subminimum wages to disabled workers. I hope you'll sign it. I did.

Additional Resources:

http://www.lni.wa.gov/WorkplaceRights/files/policies/esa1.pdf
http://seattletimes.com/html/localnews/2003843379_disabledworkers19m.html
Fair Labor Standards Act of 1938. http://www.dol.gov/whd/regs/statutes/FairLaborStandAct.pdf

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?