My Accessibility Ride Guide: Universal Studios (and more importantly the Wizarding World of HP)

As you know, I recently got back from The Wizarding World of HP.   We’ve been to Universal (and Disney) before, when we were kids, but I didn’t remember much.  I did remember “Poseidon’s Fury” and the “Men In Black” ride.  What I definitely didn’t remember were all the stairs to rides (and subsequently elevators), because I didn’t have as much of a problem with stairs then.  During this trip, I only went on a handful of rides, and we went to some shows.  Here’s my breakdown of the rides I did go on, in case you were thinking about going to Universal:

Hogwart’s Express (to go between Diagon Alley and Hogsmeade): There are stairs to and from the platforms on both the Hogsmeade and Diagon Alley side, but there are elevators.  I didn’t bring the scooter, I’m not sure if they would have let me, but probably since you would need it once you got off at the other park.  There was a girl in a regular wheelchair who shared a compartment with us. She had to leave the chair at the entrance on the train and walk a couple steps to the compartment. 

The Forbidden Journey (HP ride in Hogsmeade): There are elevators to the ride, however there is a moving platform to get on and off the ride.  I did not love that.  You can ask them to stop the ride to get on and off if needed.  The ride is set up like a roller coaster with the bar coming over your head, and your feet hanging with nothing under them.  I wasn’t a huge fan of the ride- mostly because it made me queasy, but it’s worth it to go through Hogwart’s and see everything inside the castle.

Escape from Gringotts (HP ride in Diagon Alley): This was my favorite ride in the whole park. I endured the 75 minute line twice!  There is also an elevator to get to the ride.  It’s set up like a wooden roller coaster with individual lap bars and your feet are on the bottom of the car.  It’s not too low so it wasn’t super hard to get out of.

We also stood in line for the Transformer’s Ride for an hour before it broke down. I was too tired at the end of the day to use our express passes to get on, so I’m not sure how the car was.  My parents said the ride was fun, but then, they don’t have the same concerns as I do for rides.

There are also stairs to get to the MIB ride and the elevator was broken when we were there so I didn’t go on it.  I told my parents to go without me.  The back row of the cars looked a little higher up (so you can see over the heads of those in front of you), so the row is probably also easier to get out of.

We saw the Shrek 3D Show and I rode my scooter all the way in, but transferred to a seat so that I could get the full experience.  I also rode my scooter through Poseidon’s Fury.  There’s no need to switch to a chair so it was a good, relaxing thing to do.  We went to the Despicable Me show.  There are stairs once you get into the show part (it’s like a simulator), unless you are in the first three rows which are ground level.  There are also sedentary seats at the front, which I actually liked better because the show made me a little motion sick.  We were allowed to wait at the entrance of the ride with the scooter until my mom made it through the 75 minute line.  You can either be transferred to a regular wheelchair or walk the rest of the way through (which is about 100 feet, but 10-15 minutes of standing). 

The last ride we went on was Spider Man.  The ride was level to the ground and the cars weren’t too low. That one is still fun- even though I kind of remember it from when I was younger.  

We didn’t have express passes for the park, but I can see how that would be helpful even for 1 day; especially if you get tired from standing in lines.  Most rides were a 60-90 minute wait, but some of the shows had a shorter wait time.  You also can’t use the express passes for any of the HP rides… just a forewarning :).  My last tip: bring a sweater; its freezing once the ride line moves indoors. 

All in all, I was impressed with the accessibility for the rides.  I suppose they have to make them accessible, but I never used to notice things like that.  There is a ride guide for Universal that you can look at for accessibility info, but hopefully this added to the information the guide provides. 

Feel free to contact me if you have any questions.

#CureFSHD Campaign

The FSH Society just finished an amazing campaign: #CureFSHD.  I was super excited to learn about this campaign because I felt like the purpose was to make people more aware of FSHD.  This was exactly my goal in writing The Graceful Art of Falling so I have been a big fan from the very beginning.  I will share some images from the campaign below.  Feel free to check out their website or facebook page for more information.

Scooter Time

I spent last week in Florida... at Universal Studios.  It’s been about 10 years since I’ve been to Florida.  I was super excited because we went to The Wizarding World of Harry Potter!  My mom and I were talking on the phone before we left and she asked if I would like her to rent an electric scooter to help me get around the park.  Actually, she said, “you’re probably going to be mad at me for asking, but…” I was a little mad at first, but then I realized it would probably be a good idea.

It was a good idea.  I haven’t been to a theme park in sooo long, and I certainly do not have the stamina I had ten years ago.  My dad had to put the scooter together and take it apart each day so that it would fit in the trunk of the rental car.  We were wondering how anyone who needed a scooter would actually be able to lift it and put it together- they probably couldn’t.  Luckily, I had my dad and we made it into a game; each day my dad tried to beat his time of taking it apart from the day before.

I mostly used the scooter to get into the park and from section to section.  I didn’t use it for many lines because I would have had to switch to a regular chair with someone pushing me. Given the fact that it would have been hard for me to get out of the chair, I just decided to endure the long lines.  I also walked around both Hogsmeade and Diagon Alley.  I couldn’t not- it was so crowded.  I was still tired by the end of each day, even though I probably walked 1/8 (maybe less) of what my parents did. 

Driving the scooter took some getting used to, and the crowds still caused me some anxiety.  I had to work my way through the people, slowing down and speeding up with the pace of the traffic while trying not to hit anyone in the process.  There were some close calls.  People just do not pay attention when they’re walking… especially when there are so many cool things to look at.  I guess I would rather have them looking around than at me.

As they glanced at me, I couldn’t help but wonder if they were thinking, “I wonder what’s wrong with her,” or “she doesn’t look like she needs that.”  Or maybe they were just jealous that I didn’t have to walk everywhere and were secretly wishing they had a scooter too.  When we were leaving Hogsmeade one day we passed a woman in a scooter coming the opposite direction.  I stopped to let her pass as others were just walking around and in front of her.  “It’s like I have an invisibility cloak,” she said smiling.  I appreciated the HP joke, but I felt kind of sad about the comment.  I don’t spend all, or even a majority, of my time in a chair, but I liked it better when people didn’t seem to notice me.  Maybe it’s because I didn’t quite feel comfortable with it.  I’m not sure why people don’t look at people in chairs (or scooters).  Do they feel bad for looking?  Are they not sure how to interact with people who have a disability? 

I know I sometimes feel awkward looking at people in chairs.  I often try to smile at them or say "hi"- but since I’m usually not in a chair I don’t know how that is received.   I’ve noticed that it’s people who know someone, or who have a disability themselves, that seem the most comfortable with it all.  It’s like we’re in an elite club that no one else really understands.  I will say this, I feel like I understand better what people who are in chairs go through.  Part of me already understood as I use curbs and avoid stairs when I can, but it’s not exactly the same.  I definitely understand how a chair or a scooter is helpful- it was extremely helpful on this trip. 

One day it probably won’t seem so terrible to me- because I will need it to get around.  Until then, though, I feel good about only using one when I absolutely need to… and I am so glad I did.  It was amazing to see the things I saw and hang out with my parents- I wouldn’t have been able to do that if not for the scooter.

Possibilities

I think the Universe just loves to mess with me.  I had a doctor's appointment recently where we were talking about some things that might help to improve my strength.  We also talked about getting rid of the beliefs that are currently holding me and my body back from my "divine life."  Have I mentioned I love alternative medicine?

After this appointment I felt sort of... sad.  I was super hopeful and excited about the possibilities, but I was also sad because some part of me, this disease that I've had for almost 20 years, would be missing.  It would leave a huge gap, an empty space like you experience during a breakup.  
 

Wait, what?  Isn't this what I've always wanted- to not have a physical disability?

But I got nervous.  This has been my life for so long.  What would happen to the validity of my book?  Would people believe that I wrote it or that the experiences were really mine?  Would I still be able to have a career as a counselor for people with disabilities?  How could they relate to me if I was perfectly healthy?  

And then it started.  I kept falling.  Hard.  I had really terrible bruises, and I almost never fall in a way that leaves a lasting mark.  I could barely do yoga one week because my knees were so sore.  I could just hear the Universe in my head, "This? You're going to miss this? Get over it- you will adapt, just like you have been doing for the last 18 years to the life you currently live."   

I think the Universe is right.  I am capable of living my current life.  I can cope, find ways to do many of the things I want, and I can be happy.  But truly, I would rather not be limited by my physical abilities. 

I would rather be able to do everything.  I would love to actually believe that anything is possible.

Happy March!

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What If...

Do you ever think about what you would do if things were a little bit different?  If you had more money, if you had more time off, if you were in better health, if... whatever the "if" is for you.

I was thinking about this recently, and if I had my complete physical abilities I would do so many things.

I would want to learn to ski, to try scuba diving, to learn to surf, and to travel more (possibly by myself just because I could). I would want to learn to play tennis and maybe even golf. I  could live in a two story house, move back to New England to be near my family, and maybe I would even change career paths.  I've always wanted to do something that helps others and am fascinated by alternative medicine.  

I would obviously need money and time off to do many of these things, but I believe that I could find a way to make that happen.  If I had my complete physical strength my life would be different.  Not completely different, but different none the less. 

What is your "if"? 

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