This is the second part of a two-part article. Part 1 can be found here.
Oh, Disney World. You are like Catherine Deneuve in some 1960s movie with endless deep-focus shots in which nothing happens. Beautiful, magnetic. Elusive, yet accommodating. And yes, true to your word, you are magical, too.
If anyone reading this has been so sheltered as to miss the first part of this series (I mean, darling, simply everyone who was anyone was reading it), a little background: my husband and I traveled to Disney World with our three tykes in tow: a six-year-old, whom I will call William, a four-year-old whom I will call James, and two-year-old George (I use his middle name to protect his identity, despite his pronounced lack of innocence). James, the middle child, has multiple intensive special needs.
Recently, I taught a course on philosophical issues in disability studies. We read an essay by Ronald Amundson, in which he argues that we needlessly focus on the mode of a given biological function, rather than the level of functionality. For example, take apraxia. Apraxia is a condition in which someone has neurological difficulties speaking orally, even though she understands (to one degree or another) oral speech. Some people insist on teaching those with apraxia how to speak orally, rather than letting them use, say, an iPad language app in which they touch a picture which is then enunciated by the iPad. Speaking orally is consistent with the way most people talk, of course. Yet by forcing people with apraxia to speak orally, they can’t say nearly as much. If you have apraxia, it’s much easier to tap pictures than to form oral speech. So the person with apraxia who is forced to speak orally conforms more to our concept of “speech,” but her level of functionality is reduced.
I also think of FDR, who when in public laboriously walked by use of steel leg braces, a cane, and twisting his torso to swing each leg forward, rather than using the wheelchair he favored in private. In the wheelchair, he was far more comfortable and functional. Amundson argues that if we as a society would focus on the level rather than the mode of functionality, much (if not, in principle, all) of what we now consider disability is a matter of a dearth of environments and technology suited to a range of functionalities.
I thought of Amundson often while at Disney, whose ready accommodations of James made some of the difficulties he faces (and we as caregivers face) much lessened. And thus made James less disabled.
Normally, when we walk into a place of business, whoever greets us is a bit flummoxed. They don’t know how to address James. We have to explain how they can accommodate us. Often, they have trouble accommodating us. At Disney, the moment any staff person (cast member, in corporate parlance) saw James, he greeted him warmly and appropriately, as well as my other children. He instantly explained what we needed to do and where we should go in each instance. In some cases, they would ask me if he could transfer, that is, leave his wheelchair to be carried into the ride. In general, he could, although we preferred not to. Where possible, they altered the ride so that we could wheel him right in.
And I mean, every single person was like that. Restaurant staff, hotel staff, etc. I honestly think the open respect for and accommodations showed my son affected how even other visitors saw him. As I mentioned in the earlier post, there were far fewer stares than usual, and more friendly grins at him.
People get especially moved, I think, seeing a disabled kid happy at Disney World. It’s part of what Disney World is known for. Often, outside of the Disney universe, we will walk by a stranger who is talking and smiling or laughing at something else. The stranger’s eyes will fall on my son. And his face drops into seriousness. It’s not malicious or cruel, I understand that. it’s just that my son has reminded him of, well, disability, which is a serious matter. People associate it with great suffering. The association is not nearly as strong as warranted, but there it is. And it is hard, as a parent, to see my son’s presence wipe joy off people’s faces.
At Disney, people are focused on the happiness of kids with disabilities, not their suffering. They have an extra smile for seeing him smile. Is there something a little patronizing in that? I don’t know. But at least it’s a way to introduce to others the fullness of the lives of kids with disabilities, that they are capable of joy.
I will never forget a comment someone made on a blogged response to one of my blog posts. In my original post, I had said I was so glad James was alive. The commenter said how selfish I was for not thinking of James. Because obviously, while I was happier with him, he would be better off not living. My experience in teaching the issue of prenatal testing in a variety of ethics courses suggests many people agree – they see a life with disabilities as a life not worth living. An explanation of why I do not agree perhaps requires a different blog post. For the moment, I will say that when people saw my son at Disney, they did not see a waste of a life and resources, someone whose only mode of existence is suffering. They saw a kid capable of great happiness. Great happiness, that is, if someone takes the time to figure out how to accommodate him. Disney has.
I also thought of Amundson when I read a story my oldest son, William, wrote on the second night of our stay. William’s (very short) stories often involve his triumph over his fear of the moment. That night, William was still in recovery from the trauma of visiting the Magic Kingdom’s Haunted Mansion. His story began: “Monsters can’t walk and they don’t have wheelchairs, so they can’t get to me. They are only found in haunted mansions, and haunted mansions aren’t real.” I was struck, of course, by the fact that he attributed disability to monsters. But the way James considered the function of wheelchairs was also interesting. Amundson says:
Depending on the environment and the task at hand, a wheelchair user can function at or above the level of a person with bipedal mobility. The world’s record for a marathon race is 45 minutes faster for a wheelchair user than for a runner. Nevertheless, the phrases ‘wheelchair-bound’ and ‘confined to a wheelchair’ are used as synonyms for paralysis. The irony is that wheelchairs are tools of mobility, not confinement devices. The people who are genuinely confined are paraplegic people who do not have a wheelchair, or who have one but live in an environment filled with barriers to its use.
William’s story indicated that he saw wheelchair as not essentially confining, but as essentially empowering. The monsters could get him if they only had proper disability accommodations. I wonder if seeing James so well-accommodated, or at least, better-accommodated than he is anywhere else, put him in that mindset.
On our third of four days, we drove to Disney’s Animal Kingdom. George, who is not in general a sensitive child, had suddenly formed a screaming horror of buses, monorails, or any conveyance (even in Mad Teacup form) that was not our minivan. Emphasis on screaming. Disney World can, I suppose, do that to a two-year-old. We thought we could ease George back into things by bringing him to the petting zoo portion of the Animal Kingdom. Turns out, the only way to get to the petting zoo? A little train. We tried calling it a “railway” and “Thomas,” but he was having none of our prettifications of the dark reality. So we screamed and wrangled our way to the petting zoo.
James really wanted to pet a goat. Really really. Most of the goats
were lying down allowing small children to maul them. When I brought James’s wheelchair close to a goat, it would uneasily get up and walk away. I gave up trying after a bit. I chatted a bit with some other parents, and I mentioned how James wanted to pet a goat, but I couldn’t figure out how to work it with the wheelchair. The mom, whose kids were all typical, suggested we get one of the handlers to help. That hadn’t, I’m embarrassed to say, actually occurred to me. So I went over to a handler, and a goat was brought over to James. He was very pleased!
The surprising lack of teenage pot-smokers in the Magic Kingdom was touched on in the comments of my first post. I figured that the exorbitant price of a single-day park admission (as opposed to a multi-day pass that you purchase when booking a resort stay) was the reason for that exclusion. But no. Teenage stoners go to the Animal Kingdom. There you have it.
My husband brought James and George home for an afternoon nap. I stayed with William for some big kid fun. But since William has all the physical derring-do of Woody Allen, we did not end up doing anything we could not do with James. A safari (which was really cool – animals came right up to us), face-painting, a flying triceratops ride. William did request to ride in a stroller. He had been upset that the younger two brothers got wheels, while he had to hoof it. So I strolled him. And I noticed he was far from the only 6-year-old kid in a stroller there. Perhaps another reason not to say “wheelchair-bound”!
The next day, our last, we gave up on trying to get George to actually enjoy Disney. My husband simply followed him as he tore around the hotel grounds, and I took William and James back to the Magic Kingdom. When we got there, we found that our magic wristbands, which offer us admission into the park, were not active. Initially, when planning our trip, we had booked four nights in the hotel with a three-day park pass. About two months before our arrival, I called the Disney travel agency and asked to add an extra day on our trip. I simply assumed that this request would include not only hotel, but a park pass for another day. Not so. We had to wait on a line, which took over an hour, to purchase one-day passes. And one-day passes, as discussed above, are a fishing fortune.
While waiting on the line, I called Disney customer service and received, yet again, horrible customer service (if you get Wilson on the phone, hang up and try again – he’s no help whatsoever). I explained that I was irritated that when we extended our stay, no one had thought to mention that we should also book an extra day for park passes. He said, condescendingly, “Didn’t you look at your receipt and see that there was still only three-day park pass?” No, I hadn’t. I had thought that when I added an extra day at the resort, the park pass would be included. I hadn’t booked the park passes separately from the hotel last time. He said, as if dealing with a tantruming two-year-old, “Ma’am, most people don’t expect to go to the park on the first and the last day of their trip anyway.” I replied that I didn’t either, which still meant a four-day pass would be expected. He sighed, and further reduced his manner of address to Teletubbies level: “Ma’am, you arrived on the 13th, and are leaving the 18th. So the 14th is day one, the 15th is day two…” and then he trailed off as he realized that five nights in a hotel does usually mean four days in a park.
James and William waited remarkably patiently, although James was starting to stim. I must admit the dark truth: neither Wilson nor I were our best selves for the rest of the call. I believe the Long Island in me came out when I said, “For what I’m paying I could have gone to Europe. The reason I chose to spend it here instead was because of your accommodation of kids with severe disabilities, so I really didn’t want to wait on a line for over an hour.” Wilson: “I don’t see what you expect me to do, Ma’am.” Me: “I’m merely calling to give you feedback. But it doesn’t appear that you actually give a s**t what I think.” I do believe that is the first time ever I have cursed at someone I didn’t know! Anyhow, as I said, not my best moment.
William had spent most of the time on line perched on the arm of James’s wheelchair. He had his arm protectively around James most of the time, with only a few instances of reciprocal swatting, pushing, and pinching. When we finally arrived at the ticket counter, William announced in an outraged voice to the ticket seller, “We have a disabled child here!” I learned it from watching you, Mom. I learned it…from watching you. Luckily the ticket seller was awesome and helpful (try to catch Jorge, if you need to buy tickets at the park). He arranged for us to add a day onto our multi-day passes, rather than the full-price single-day admission. Instead of $391, then, we would pay $71. Which was preferable.
We had a lovely day at the park, and rode on both kids’ favorite again: Mad Teacups. Unfortunately, I had a Skype job interview at 2, so we had to be back at the hotel rather quickly. I’m worried I was a hot mess for that interview, distracted by Teacups and Wilson and child-wrangling. But hey. The Mad Teacups was worth that silly tenure track job at a really good small liberal arts college! Hey, wait a minute….
We went back in the evening as a whole family so George could be screechingly terrified of fireworks and refuse to go on rides (“No want teacups! George no want it! No want it!!!!!”)
My husband and I talked about our trip that night. Beloved co-blogger Russell will back me up on this: my husband is not given to sweeping sentimental statements. He said, however, on this trip, more than any other, we were just like any other family. We both remarked that what did it was not the ability to arrange times to return to rides, or even the rides that could accommodate wheelchairs. The real accommodations, and what makes this an amazing trip for any family with a kid with disabilities, is the attitude of the staff (phone services excepted). They seemed genuinely devoted to making this a special experience for all my kids, and seemed to have the know-how to make it happen. (Well, for William and James. There was no helping George.)
People in my world (liberal-left academics, mostly) tend to view Disney as an evil corporate empire, bent on world domination. That’s as may be (as I always say about those bent on world domination). I, however, left dreaming of what the world would be like if all businesses treated people with disabilities this way. Not as irritants who force expensive ADA-compliant accommodations, but as welcome guests. If other business trained their staff to interact comfortably with people with disabilities. It would mean, getting back to Amundson, that my son would actually be that much less disabled.
Esteemed co-blogger Kazzy, in the comments on the first post, asked if it was worth the money. I don’t really know how to answer that. Could I purchase more units of experienced pleasure per dollar in some other way? Perhaps. I could get some tips from the stoners at Animal Kingdom! But I leave Disney with a unique experience of respect for my kid, of ease for us, of seeing William thrilled to have a giant lollipop, and an already-treasured memory of James’s elated face as he rode the Mad Teacups and petted a goat.