My family loves Disney World and Seaworld. We travel to Orlando, Florida, several times per year to get our “fix,” but this time was different for me. Within the magical walls of Disney, we have spent many vacations of happiness, and those vibrant memories call us back, over, and over again. I anticipated that this time we would have some adjustments, because of my current capacity of heart function, and we would just have to improvise along the way. I worried that I would not be able to keep up and that I would somehow ruin the time of my family; so, I compensated…well, I tried to.
Day 1 of our trip was at the Magic Kingdom Park. This is my favorite Park, but also, in my opinion, the hardest to navigate a wheelchair in, because the pathways to most areas are congested and many people just run into the chair. This was tested earlier with two of my children having injuries, but on different occasions. It was decided that I would forego the wheelchair and “see how I would do.” If I were being honest, the walk just to get inside the gates of Magic Kingdom already had me winded. I told myself to just sit and take breaks a lot. This is easier said than done, because I didn’t want everyone else in my family to spend their time at a theme park just sitting. As usual, we split up with fast passes – Bryan and Aubrey to the roller coasters, and Ace and I, to slower rides. Ace was great, taking care to not walk too fast ahead of me and sitting when needed. He and I did some “long-sitting rides” such as Carousel of Progress, Small World and the People Mover. We meandered through some stores and then sat some more.
We met up with Bryan and Aubrey again for lunch (at Plaza restaurant which was awesome) and then more walking. After I eat is the worst times of day for me. I am weak and tired. I have been told it is because the blood is being routed to stomach for digestion and therefore, the heart has to work harder to keep up the blood volume for the rest of the body. For me this is a problem because my heart already works too hard, even at rest. Walking after lunch was very difficult. I felt like my legs were lead. I wanted a nap and my head was pounding. It was at this point I realized the decision to not get a wheelchair was probably a bad one. Wheelchair rental is at the front of the Park so turning back to get one wasn’t something I wanted to do either. So, I walked – with my heart beating out of my chest and my head swimming. I felt compelled to “carry-on.” I told myself I needed to for my family, so I didn’t ruin their day, or so that this trip was equivalent to previous trips in “worry-free” fun. But in hindsight, it really wasn’t about my family at all, as they were having a good time with, or without myself dragging along. It was about me, and the experience I would have at my “happy place.” I decided, before I even left my house, that Disney in a wheelchair wouldn’t be enjoyable; or at the very least, not the same. So I ran myself out. It didn’t take long before I was napping in a shaded corner on the ground. I simply could not do anything more without this rest. After about an hour, I felt like I could continue. We left the Park at 5pm. I am uncertain whether the family would have stayed longer without my dragging-ass along.
The next day was Epcot, and I knew there was NO way I would be able to walk it all day; especially because that morning I had woken up to edema in my feet and ankles from walking too much the day before. Today, we would rent a wheelchair, much to my disdain.
So $12 later, we had this wheelchair; this symbol of inferior human status, that I was to display the fact that I was “lesser” than all the “abled-body” guests. As a person who advocates for disability rights, for a career and for my son, this may sound brash. But this is the gross truth – disabled people are viewed poorly, and is why they are the #1 discriminated minority worldwide. This fact burns me to my core and why I have been so vocal for their rights in the past. I now find myself in the position of looking through a keyhole at what the disabled community endures when it comes to society’s perception. I didn’t like it. So much so, that I refused to sit in that damn chair the entire day. I sat in the chair when long distances were ahead. Other times, we parked it. I had a choice to sit or not – that makes me lucky. Others aren’t so lucky.
While peeking through this “keyhole of disability,” I noticed who looked at me, and how they looked at me. Most the time, nobody really noticed me. I mean, my eyes are at their butts (which sucks) and so it was easy to look past me. I was invisible to most. This is a statement that is prevalent in the disabled community and I can see why. The ones who did look at me in the chair, mostly had an unfriendly gaze. I am not sure if they were assessing whether I had a disability and decided I didn’t, as my outward appearance doesn’t display my ailments. Or, if they were just inconvenienced by the fact that I was there; in a wheelchair, probably considered in their abled-body, and therefore entitled, way. Either way, I was uncomfortable. I felt like now, I was not only a hindrance to my family having a good time, but apparently to EVERYONE at the Park. I ditched the wheelchair each chance I could, because in it, I felt apart from the rest: a “one not like the other” sort of feeling. Out of it, I felt accepted into the crowd. It turns out that I was right: Disney in a wheelchair is not as enjoyable – at least, not for me.
I accept this could have been my own perception, and not actual. But isn’t that where we all live…within our own perceptions? And how is it that my perception is echoed across the disabled community by thousands upon thousands, if there wasn’t truth to it? They can’t all be “perceiving” injustice, inequality and discrimination – much less, unfriendly stares. This experience has only compounded my determination to become a mouthpiece for disability rights. Once I am well again, I will fight even harder to be heard for them.
This trip has made me think a lot about the fortitude it takes to live as a permanently disabled person. Fortitude is described in the dictionary as, “mental and emotional strength in facing difficulty, adversity.” The strength in character it takes to look beyond the unfriendly stares and judgment must be a huge daily challenge. It seems to be “insult upon injury” to have to deal with such unnecessary indignation. I am not sure I would have the grit it would take, or the tolerance. Hell, I was sore by this one experience at Disney! I can’t imagine how irate I would become with constant exposure. I envision lots of swearing…lots and lots.
Beyond my ineptitude of embracing the wheelchair, and all the stigmas that come along with it, I found a deep respect for others who can – as it must take a “lion’s will” to stay composed. I presume that the fortitude required isn’t just the strength to get through the difficulty, but also the capacity to face that situation in a spirited and resilient way: to resolve to find happiness anyway – especially at the “happiest place on earth.” That is the “good stuff” in which I should have drawn upon during my time there, just enjoying where I was and looking through the glares with a smile. I won’t wager my joy again because the “sheep of society” may view me as “lesser.” As they say, “Lions don’t lose sleep over the opinion of sheep.”
