A bill of rights as an autonomous disabled person

So let's take a trip to the present here for a little bit...

     Many of you may know that I am now in the interesting phase of entering the real world, let alone now finally dealing with the systems in a city where I have completed my undergraduate career.  For a person who has needed assistance from other people for most of my life, you would think I would have some idea how to do this process or at least how to get started. In the past, I have always been respected as a crucial member of a team that planned my care as soon as and possibly even before it was appropriate. As such, I am used to meeting with and coordinating with many different people so that I can go about my day as I need to. While I realize that this might be somewhat of a unique situation, I still amazed at the amount of stereotyping that goes into creating policies for people like myself, who wish to self direct their day but need assistance doing so. At this point I am trying to take the steps to have the most independent option possible but there are a lot of things that I found out do not go without saying in terms of how people interact with me every day.

• None of my aides or caregivers need to be my parent, as much as they want to be.
• Even if someone does not agree with a decision that a disabled person is making, it doesn't mean that it's not their choice.
• While I realize there may be limitations on payment and billing of certain assistance services,  this does not mean I cannot come and go as I please. My community involvement should not be restricted in any way because of the help I need. (I know there are people for whom this is not the case but if it is relatively simple for the person to leave their home, there's no reason why they should be restricted from doing so.)
• Somebody assisting another person doesn't need to add commentary on every individual task unless it's asked for.
• I have the right and legal authority to be a part of planning my own support. I should be treated as if I know what's best for me. I don't have a background in law but I know there are many of us who learn regulations out of necessity. 
• I am a pretty laid back person in general, and I am pretty easy to get along with, so people are often surprised when I stand up for myself in terms of what I need. This needs to be commonplace and not unexpected.
• If I say that a solution does not work for me, people need to listen to that and respect that.

I don't understand why consumer directed support is not a universal thing and why it is so hard to set up. You'd think it would be the easiest thing to access as an alternative to a nursing facility. But somehow the people who know what they're doing always end up working for large companies that don't acually have a good reputation for client services, instead of allowing the client access to a large network of people with the credentials they need to help them. While I think it should definitely be considered as an option, it is definitely not the only option to go through an outside entity for management support as my personal experience and the experiences of many of my friends can attest to. Not only is the quality of client services severely impacted, but also the quality of the environment for the people who work there. Don't get me wrong, I've had some fantastic experiences, but largely I find that if you don't live with some type of disability you don't understand what it's like if  somebody

forgets about you one day, or says there's nothing they can do for you. Now, imagine what that's like every day on and off for a month. This is not your Excel spreadsheet, these are our lives.

....and it's time we took them back!

Pastries, subways, and cab drivers. Or, adventures in Paris

 I mentioned earlier that when I first returned from London, it was very hard for me to sum up the experiences I had in this part of the world. Nearly everybody I saw asked me “how was it?” “what was it like?”, or “what was your favorite part?” It  took me a while to come up with  experiences or funny stories that  I could tell everyone about In a coherent set of words. If I talked to you, these adventures were probably among the stories I told you, so here goes, the legendary weekend trip to Paris…
    As consistent with the theme here, we were once again left running for the mode of  transportation, this time, the Eurostar train, this time by a communication failure not unlike one of those Bad Lip  Reading videos, that was completely my fault. If you have not seen these, I think they are hilarious due to the sheer fact that these situations happened many times, most of which were incredibly hilarious. This one, however, was  not, and led to me having a meltdown in the train station as they were calling our train for final boarding when we arrived.  That aside, however, both of us calmed down when we were able to eat the croissants provided with the complimentary breakfast!  Little did I know that this was only  the first of the adventures to come.....
     When we got to the Gare du Nord (the Northern Railroad Station for you non-francophones), I suggested we proceed to the information kiosk. I had the address and the reservation of the place we were going, but I was unable to get through to them on the phone beforehand as my international minutes did not work in the UK. So, I went to the ticket agent and asked her, in French, to please call the youth hostel  so that I could confirm disability accommodations. As it turns out, there was no place on their website to specify this or make any comments. So the agent called them and she comes back asking me if I can walk upstairs at all,  because there is somebody already staying in the accessible room.  I said no, but then I thought the easiest thing to do would just be to sort this out when we get there, because of course no one knows what to do with a Deaf person and a person in a wheelchair when they see us together. So I asked  for advice on the nearest transit location and we ended up waiting for about 45 min. extra than we were supposed to after finally finding the place when getting lost coming out of the station. At this point, both of us were so tired and hungry that we decided screw it, we're taking a cab.
     So  my friend and the cab driver folded up the chair just fine, but then the  cab driver seemed concerned that my friend could not put me in the car somehow. He then decided that he and his brother, who was there for some reason, could do it better. So both of them picked me up and tried to shove me in the car fireman style without asking.   Thankfully, I knew enough to tell them to stop, and tried to explain a better way to do it, or to just leave me alone, and let my friend do the job, but they  wouldn't listen, and kept trying to force my legs in the back of the car, after I explained that they didn't bend so easily. After about the fifth  time of trying to do this, they finally listened and let my friend put me in the car the easy way, all the time the meter was going up!  At least I knew now that I could never be kidnapped easily,  at least not in France.
      When we got to the  hostel, I thought, things had to start getting better.  Firstst of all, these people didn't believe that it was even possible that I could have made all the reservations and all the card information etc. because I was in a wheelchair, so they kept trying to talk to my friend, who, of course, could not hear them well. The manager was mad because he had to keep opening the side entrance for me to get in and out, and he was also mad because he insisted on  kicking two guests that weren't  disabled out of our room, even though we said we didn't mind sharing, because it was a  four-person room.  Keep in mind  that this entire time, I was speaking French like a duck with a nose plug.
      After this was all sorted, as the Brits would say, the front desk was very nice to us. I wish I got the woman's name that worked there because she was such a pleasure to interact with and she was so helpful to both of us. She said that there were many options for transportation around there and told us where we could go and what to buy when we got there. The most interesting thing was that she complimented my fluency in French and said I spoke with  a British accent, which is funny because out of respect for the culture, I had to try so hard not to do a British accent when I was there, but I quite enjoy doing it at home :-)  This woman moved between French and English easily when talking to my friend, and  when she noticed we were signing, she tried to teach us a few signs in LSF because she said she knew someone with a Deaf baby.
      I remember when she informed us that the  hostel Wi-Fi was not working (pronounced with a short I  in French, that was fun to say!)  So not only did we have phones that could not receive data and the minutes didn't work, we had no Internet either! What did people do  before technology? I realized that I knew the general area my friends were staying in, but I didn't even have the address to snail mail them a letter. We had not seen anyone we knew all day, and could not contact the people we were supposed to be meeting up with  to let them know we were okay. So, as we ventured out to try to find an  Internet shop, which we discovered were all closed because France and nap time, we decided that we were going to eat pastries for dinner, so gosh darn it we did, and they were some of the best things I have ever eaten. Mine had pear flavored liqueur in it, and my friend got a lemon meringue.  After the day we'd had, that was the best thing we could've asked for!
      Instead of  venturing out in the rain again, we decided to stay in and catch up on episodes of Switched at Birth that I had downloaded on my computer. There was so much to be said for the comforts of home at a time like that.
      The next day,  I knew that the group was going to meet at the Louvre on free day. So I decided that if we had any hope of salvaging this adventure, our best bet was to go there.  After an interesting walk to find transportation  that was not underground, we finally made it there.  We realized that our group was nowhere to be found, and that it wasn't free day after all. So of course, what is the first thing we do? We have to go looking for internet. After looking at a few rooms and paintings, we find out that there is an apple store in the atrium of the Louvre. So here we are, we could be anywhere in the world seeing things that people have never seen, and we're in an apple store trying to use the internet.
     So I was finally able to connect with my friend and he said everyone was meeting up at Notre Dame for the mass later that evening. I checked the transit schedule and realized that it was only about a 15 minute bus ride to L'Institut National des Jeunes Sourdes - AKA St. Jacques. This was the school where the founder of American Deaf culture, Laurent Clerc,  went to school and it ws the first school where manual sign language was used as the primary method of instruction for deaf students. As some European travelers may know, a lot of the streets in France have circular intersections with different branches. So when I kept asking for directions and the guy would say 'go straight' I didn't know what he meant because there were too many options. We had no GPS but I found out later that we were only 500 yards from the school itself but we were so lost and I was so upset that we decided not to continue.
     We ended up making our way back to Notre Dame to meet up with the rest of our group. By the end of this ordeal I was so happy to see people I actually knew besides my friend.  They didn't know we had made it there and wanted to know where we'd been the entire time. They expained that they could use my interpretation skills to order food so we decided to go to a meal together where I could tell everyone what they were reading on the menu.  Like any true traveler would I ordered des cuisses de grenouille (that's frog legs for you Americans). It's true, they do taste just like chicken. Maybe I'm weird but I love foie gras which is paté made out of goose liver, and you can spread it on toast - it's amazing!
     We ended up cruising the markets and the bookstores, including a really well known one called Shakespeare and Company. While some people opted to climb the Eiffel Tower, I was obviously not that interested as the elevator only goes to the second deck. So instead, another group member had the idea to go to L'Arc de Trionphe on the Métro, which is awful for wheelchair users. So once again this ended up being an adventure of carrying me down a flight of stairs. I was able to recruit a very good looking French passer-by and explain to him how to lift the wheelchair and help us down. While there, my friend told us that the Eiffel Tower lights up every night at midnight, so we decided to stay up and watch the sparkle.
     The next morning we made our way back on the Eurostar on our own, in just enough time to have our classmates to have security problems and have our train get stuck in the chunnel. So for all this concern about being on time, there was nothing I could do about the 2 hour delay back to class except to take a nap. Somehow our professor did not seem surprised.
     Until tomorrow...

(Image: Me sitting in front of the Arc de Triomphe with my arm outstretched like I'm trying to be Vanna White. The picture was taken at night and I am sitting in my chair wearing a striped tank top and shorts)

(Image: Two pastries in a box. The one on the left has lemon meringue with circles of whipped cream and designs on the top. The one on the right is a pear tart with what looks like a cursive letter 'H' on top.)

(Image: A view of the palace outside of the Louvre on a rainy day. A palace is visible along with a ferris wheel on a slight angle.)

“A Small Family Business”… and a cold!

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

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

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

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

Until tomorrow!

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

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

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