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Visiting Disney World with a Child with Special Needs Part 2

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.

FDRBraces2I 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

Goat and James, with the help of a handler, make contact to their presumed mutual satisfaction.

Goat and James, with the help of a handler, make contact to their presumed mutual satisfaction.

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.

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36 thoughts on “Visiting Disney World with a Child with Special Needs Part 2

  1. This is both a beautiful piece that moved me to near-tears at the very end, and also a welcome chance to rethink my attitude about a corporation treated (as you note) as an unmitigated villain by so many.

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  2. A great post Rose and thought provoking. I definitly suffered an anti-Disney phase, though it was more of an “ugh they’re so cheesy and corny” than it was “ugh they’re an evil culture destroying corporation” but I have mellowed on them a lot since then to a genial tolerance. Frozen wasn’t terrible (and I loved the subtle callout to gay families) and the new Malificent movie looks like it may be great (though it could easily be god awful).

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  3. “…we were just like any other family.”

    Sounds to me like it was well worth it. Here’s to hoping that the rest of society — be it an amusement park or a $250-per-person restaurant — becomes more willing and better able to understand, respect, and accommodate the needs of others.

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  4. I’ve enjoyed both these posts, Rose. Here’s my two cents.

    I once worked at a place that had regular training–I had to do a 1 hour customer service training session once or twice a month. It was dull and fairly repetitive, but it did work to keep customer service in mind at all times (some of it was as simple as “never point a customer to the right location, lead them there”). They got the idea from Disney, and even used a few of Disney’s own training films.

    More deeply, I often wonder if the word “accommodation” is poorly chosen. It implicitly emphasizes the disability. Maybe a word like “mobilizing” would be better.

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  5. Ah, forgot to add my favorite moment in the trip. We were looking for handicapped parking, and George called it “candy-popped.” I now wish to change the word “disabled” or “handicapped” to “candy-popped.”

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    • Oh, sure. As if the picture of the kid and the goat wasn’t cute enough. :)

      I’m so pleased for you and your family that you had this experience! Disney deserves props for picking good people to work its parks and having them trained so well.

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  6. I’m happy your family had such a lovely time.

    Disney genuinely understands the value of happy customers and works hard to achieve that. Whenever I call the phone company, and after five levels of voice menu and 30 minutes on hold, I’m greeted with “How may I offer you excellent service today?”, I’m reminded of the difference between commitment and lip service.

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  7. aesthetically i really, really dislike disney and it’s attitude (and often heavily gendered assumptions) toward play, roles, and ceaseless marketing. i dread the (presumed) disney vacation when tiny genghis is old enough.

    but this was a great series and i’ll be sending it along to folk i know, childless or otherwise. i’m glad your kids had a (mostly) great time.

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    • Yeah, the gender thing is seriously off-putting. Although maybe they are trying to change that a bit (Brave)? But the princesses, dear Lord, the princesses! Another favorite moment I didn’t mention: we went to a restaurant that featured actresses in costume pretending to be Cinderella, et al. My oldest peered at them and asked, “Are those animatronics?”

      He preferred Minnie ears to Mickey ears, however, and no one seemed to care much.

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      • Well they tiptoed right up to the line with “Hello Family” and the fundamental premise of Frozen; that you shouldn’t have to hide what you are and live in misery just to spare the prejudices of others; was a pure LGBT friendly theme so yes I’d agree dhex and Katherine that Frozen was an expecially LGBT friendly theme.

        I’m not even remotely surprised, Disney is a corporation and they’ve seen the writing on the wall for quite some time now.

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    • I’m not a fan of princess culture either but I’m impressed in a cynical sort of way about Disney’s ability to create an entire kid culture within a relatively short amount of time. Princess culture really didn’t exist in the United States until Disney decided to market their heroines as the Disney Princess line in early part of this century. Its disgusting, it probably goes against the tenants of democracy but there is nothing that could be done about it probably. Well, I can think of one thing that might work but it would be disgusting.

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    • It’s the copyright stuff that really rankles me–just straight-up thievery from the public commonweal, committed by expensive lawyers in suits. I know it’s no worse than what a lot of other corporations have done, but I cut my teeth on it and it still has the power to annoy.

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      • The creative project I am developing involves a lot of public domain characters. A few years ago, Dynamite Entertainment did the same thing. Which would be cool by me if they didn’t start asserting trademarks over these characters’ (mostly created in the 30’s and 40’s, by people with no relationship to Dynamite Entertainment) names. It puts everything in a frustrating gray-zone.

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  8. Rose, I cannot comprehend you did this. For multiple days. It boggles the mind.* I remain yours in admiration, you’re a far, far better woman then I aspire to be, let alone am.

    *My brother worked at Disney World while my sprouts were still sprouting. I did this for one day. With one of them, the elder sprout being uncomfortable in crowds. With my brother, who worked there. And I will never, ever, ever do it again.

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  9. This was a really tremendous post, which is to say that both were (I’m counting them as one longread in my head).

    I still never want to go to Disney land again, mind you. When I was growing up it was the dullest amusement park on the planet for the over-5 set, and EVERYONE who ever visited us from out of state wanted to be taken, so I went a lot. But I confess I find this report of their attitude (and, I have to assume, universal new-emplyee training) toward people with special needs to be admirable.

    You talk in the first part of this post about, essentially, mobilization, so it’s worth noting as a reader how much of what made your visits so pleasant was simply people. When you see it laid out like that, you realize how very, very little it would take to make life better for people with special needs pretty much everywhere.

    If you don’t mind, I might pass this piece along in a professional capacity.

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    • Tod, that would be great if only because I would like to publicize this aspect of what Disney does to influence other businesses. With the caveat, of course, that I wrote this on the fly, and would change several things.

      Definitely, it was people. (Soylent Green!). No, really, I was surprised to find how much employee attitude mattered.

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      • I remember my brother saying that you constantly get training and updated training to hone those people skills; that the customer (particularly if that customer’s a child) comes first.

        What surprises me is that the same people-centered ethic doesn’t extend outside the staff in the parks themselves to employees working at the other portions of the resort.

        Disney, you listening?

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  10. Rose,
    While it sounds like you had some minor difficulties, overall, the vacation was a sucess, and for that I’m pleased for you and your family.

    A few other thoughts:
    As a plotter for world domination, I have to say that Disney is no where half as evil as REAL plotters and wannabe dominators. :)

    My father is now in a powered wheel chair so I have some greater idea of disability accomodation than i did previously and I’m been quite satisfied with the accomodations staff that I’ve encountered. I was recently at a convention in Dallas and the entire hotel staff i encoutered were very responsive and proactive.

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    • In general, hotels > airlines > restaurants > all other businesses I can think of at accommodating disability. In general, his motor disability is more readily accommodated than his cognitive disability.

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  11. Pingback: Visiting Disney World with a Child with Special Needs Part 2 – The League of Ordinary Gentlemen (blog) | Mickeys Discounts

  12. Rose, thank you for both posts.
    Mrs. LWA, by chance, is a cast member in Guest Relations at Disneyland.

    It is gratifying to hear an experience from your point of view. Mrs. LWA sought guest relations precisely because she is the sort of person Guest Relations was meant for- she is endlessly cheerful, smiling, and thrives on making people happy.

    Your experiences sound very much like what Mrs. LWA reports from her side of the counter. There are cast members like Jorge who are exemplary, and others who are not-so-much.

    There are guests like you and james who need special attention, either because of a mixup on passes, or because of a special need, and then there are guests who are attempting to defraud the system.

    Again thank you for the perspecitve- it will give Mrs. LWA a cheer to hear of someone having amagical time.

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    • And please let Mrs. LWA know that the folks in Guest Relations were awesomely helpful and professional and thank her for me. We have it easy, in a sense, because James is visibly obviously disabled. No one who sees him thinks we’re trying to scam anyone (or I suppose they may think he’s the child actor of the century). Which may be why we experienced all the negative/suspicious reactions when I phoned someone, and not in person. I imagine someone whose disability is less visible would have more issues. (I admit having a moment of suspicion myself when I saw a healthy-looking teenager in a wheelchair with a friend sitting in her lap…”not every disability is visible,” I reminded myself…but not every claimed disability is genuine, either.)

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  13. We get a decent number of people with varying physical capabilities in court and in our law office. Part of our practice, not that I handle personally much but I do observe and help out, are drafting trusts often for people of very advanced years and significant diminished physical capacities. Obviously, coming to court, or even coming to see a lawyer, are not typically events that bear the inherent happiness and fun of Disney’s Magic Kingdom.

    I hold doors open and walk a little slower as a courtesy. I make and hold eye contact and don’t talk down to the person — just because their legs don’t work like mine doesn’t mean they aren’t smart and capable of making decisions. Sometimes getting signatures from someone with limited dexterity or hand strength is a bit of a challenge, but that’s one reason why we have notaries on staff.

    But mainly, it’s treating a needed accommodation as a matter of course, and offering the same dignity you casually afford anyone else.

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  14. I’m a retired physician who used to practice near Disneyland. A lot of my patients were employees … in other words they had decent benefits, a union, and adequate pay to cover housing, food, etc. without more than a HS diploma. It’s not an evil company.

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  15. “(if you get Wilson on the phone, hang up and try again – he’s no help whatsoever).”

    To be fair, he carried Walt through that planewreck in the South Pacific and all it looks like he got was a crummy phone bank job.

    (but really, great series of articles. Thank you for writing them.)

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  16. My guess is that Wilson was such a douche nozzle in large part because he dealt with you over the telephone rather than in-person like the much more helpful Jorge. It’s a lot harder to be obstructionist and useless when you’re in a face-to-face encounter.

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  17. I didn’t get to say this on the first post, since the comments were closed, but I was a child-free person on my last trip to Disneyland, but I like the kids… so there’s that. I left my three year old at home (see your comments regarding George’s “fun time” at Disney World) and crashed Disneyland and California Adventure for two days. Not bad. California Adventure has booze and roller coasters, fantastic combination. I promise to take Junior when he will actually enjoy it. Your story leads me to believe that will be when he is about six years old.

    Anyhow, I appreciate the post, Rose. Although I don’t have a family member with a disability, I surround myself with awesome people who experience disability. I’ve taken to babysitting my friend’s 10 year old daughter who has Autism. She is always stimming and has apraxia, but mostly she is an energetic 10 year old girl who likes earrings, styling hair, and teasing you with her speech generating device. (She knows it drives me crazy when she presses the “orange” button 25 times in a row!) She had a great time on her trip to Disneyland last year. Where was I going with this? Oh yes, I begrudgingly cut Disney a little slack.

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