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Visiting Disney World with a Child with Special Needs Part 1

This is the first part of a two-part article.

We chose to go to Disney World because it should be easy. Vacations are a bit tough for our family. We haven’t been on one in over two years.

My husband and I have three children, ages 6, 4, and 2. The 4-year-old, whom I will call James, has a chromosomal disorder. As a result, he has severe psychomotor and cognitive disabilities. He is fed via a feeding tube. So we wanted a vacation where everything was, quite simply, as easy on us as possible. A place where disabilities where easily accommodated, a place that’s good for kids. So. Disney World, ho!

I’m assuming, given Disney’s concern for the bottom line and the massiveness of this operation, that their accommodations of disabilities is profitable. I wonder why other businesses don’t follow suit.

In planning the trip, I admit I was lazy. I started Googling, and there were just reams and reams of webpages offering advice, admonitions, etc. Overwhelmed, I took a shortcut and called their travel agency to explain what we need. That is, wheelchair accessible, on the monorail line (so we could just pop James in without removing him from his wheelchair and return easily for naps), a suite with a bedroom door that closes – kids sleep in the living room. The guy was amazingly friendly and cheerful in helping us find something accommodating, although it was far more expensive than I thought it would be. So we kept in budget by driving rather than flying. When we arrived, I was surprised to find a ginormous suite with Bosch appliances, in-room washer/dryer, and a seriously gorgeous bathroom that is larger than my first New York City apartment. I now realize we are in the most expensive Disney resort. Ah. Still (mostly) happy with the choice. Except when we didn’t have hot water this morning. Spending lots of money makes you far more outraged at life’s little inconveniences.

The hotel’s aesthetic seems to veer between Victorian and the 1920s. There are Victorian dormers and turrets, and our room contains oval-framed silhouettes of Mickey and Minnie. Yet the music playing is strictly 1920s, and the staff wear 1920s style clothes. The overall effect is a bit less Olde Timey Nostalgia and more The Shining. I am happy to report that elevators, however, remain bloodless.

Other planning issues went…not so well. When I received our itinerary, I realized we were paying for a meal plan for James. Who, you will recall, does not in fact eat table food. I called their main number and spoke to one person who told me that we could not take him off the meal plan. But, she suggested helpfully, I could use his meal tickets for merchandise. I deeply, sincerely, do not want lots of crappy Disney merchandise (although I have already been suckered into several pairs of mouse ears and a seizure-inducing light-up bubble gun). So I fired off an email saying that I think it is ridiculous to pay for food for someone who does not actually eat. I received an apologetic phone call saying that they can’t take him off the meal plan “because it’s in the computer,” but in this special case, they will let me exchange any unused meal credits for a refund. She noted, however, that his food total was only a little over $100 out of a massive bill. Which, I feel (and she – to her credit – acknowledged) is not the point. Did it need to be brought up, then?

When I had spoken to the initial super-friendly amazing booking agent, I had asked what to do about disability accommodations at the parks. I was told just to speak to Guest Relations when I arrived. I knew certain rules had recently changed, and I wanted a better idea beforehand, though, so I called their Disability Services hotline. The woman who answered treated me with deep suspicion. (Disney? Seriously? You have, shall we say, inconsistent service in the phone department.) She said that they had “no accommodations” for people with wheelchairs. Which seemed a bit odd, since I already knew that, say, many rides have parts that can be modified to allow him to stay in his wheelchair. And now that I’m here, I notice that there are, in fact, ramps. And curb cuts. Among many other basic wheelchair accommodations. She further said that the only thing that would “work” to get accommodations (which seemed in her mind entirely a matter of skipping ahead in lines) was that my son was cognitively disabled. His motor disabilities are, apparently, simply useless. Useless! She said (correctly in this one case) that we can get a Disability Access Card. For rides with waits longer than 30 minutes, we can get an assigned time to return. “He’s gotta be one of the people going on the ride, though,” she said warningly. Nuh-uh, for realz?! I mentioned that I had heard that if a ride cannot accommodate a disabled child, one parent can wait with him while the other rides, and then they switch without waiting on line again. “No, you can’t do that. It’s just the assigned time now.” As I have learned since arriving, one can indeed ride switch. (Which is a nice accommodation, thanks!)

Here is what is most surprising at Disney so far: many, many, many people come without children. And many of those folks seem a bit annoyed about being adjacent to child-like behavior. Which is a little odd. I mean, it’s Disney World. It’s not Alinea. A childless couple’s desire to come to Disney without children escapes me, but hey, whatever floats your boat. Every vacation spot has its drawbacks, however, and I think at Disney World, one might expect that a major drawback would be the presence of children.

Today marks the halfway point of our trip. So far, so good. Well, our two-year-old bolts toward something dangerous whenever possible and bursts into hysterics on many rides and all monorails. But other than that, very nice. There are, in fact, many many accommodations for James. Even for his motor disabilities! There are maps of parks which list all the access information for each ride: whether he can stay in his wheelchair, whether he must transfer from the wheelchair (possible but not preferable). It really makes things much easier for us. Most of the staff in hotels and parks reach out to say hello to James as well as my other children. This is very very rare. At most businesses, he is ignored. Perhaps “ignored” is not quite the right word. Rather, people are too uncomfortable and afraid of staring or saying the wrong thing to engage with him. But at Disney, even more pleasingly, the staff wait for a response! For James, as with many children with cognitive/motor disabilities, there’s often a bit of lag time in his sign language responses, as messages don’t so much rush around his brain as mosey and meander about. Still more pleasingly, when he signs “thank you,” they always recognize it and sign, “you’re welcome.” To see my son interacting with strangers is unbearably moving to me, and whatever flaws Disney World has, I am very very grateful for the opportunity.

There are many kids with disabilities here; many with disabilities as severe or more severe than my child’s. I am utterly, entirely, unused to this in any situation except the annual conference for families with my kid’s syndrome. So this is nice, too. People are not staring, they’re not even doing the quick-looking-away thing. He’s just another kid in a wheelchair. At one point, James suddenly grabbed the arm of the ride operator who was strapping in his wheelchair. I apologized, and the guy laughed and said it happens to him a million times a day. James loves loves loves rides that spin or make sudden quick jerks. Forgive me the cliche: seeing his grin really does make this all worth it.

The people in the character costumes made a particular point of lavishing affection on James. He was just blown away by this. He was giggling and kissing them and holding their hands. They were extremely patient and kind with him (special props to Eeyore, whom I suspect James tried to French kiss). How could I not be so happy when seeing my kid so happy and finally getting affectionate attention from strangers? One thorn on this rose, however: I did notice they paid relatively less attention to my typical kids. It was subtle, and I’m not sure my typical kids noticed it. But that does seem one of the downsides of having a sibling with a disability, however minor.

In general, I consider myself genuinely lucky to have James. My life is better with him in it. I mean, with him as-is. I would “cure” him for his sake, but not for my own. There is, however, with one major caveat. Having a child with a disability is not the whorling vortex of darkness and despair that I believed it to be when we first got his diagnosis. It’s really more of an everyday sort of pain in the ass. I often think to myself how much easier everything would be if only most families had a kid with similar disabilities. Cars would come with standardly optional wheelchair ramps. Or car seats that fit big kids. I mean, you can get this stuff now, it’s just horribly expensive, ugly, and thoughtlessly designed. Pediatric wheelchairs would be as well-designed and easy-to-use as strollers are. Diapers would come in all sizes. Shopping carts could accommodate bigger kids. Etc. etc.

Disney is not that world, of course. But it is something closer to it than I have yet experienced.

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40 thoughts on “Visiting Disney World with a Child with Special Needs Part 1

  1. Rose,

    How much of the “changes” and suspicion you faced might be related to the rumors of people “renting out” folks with disabilities to line jump?

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    • I think entirely. The guy who checked us in to the hotel explicitly said as much. Even if it wasn’t a widespread problem (which is what I suspected), I imagine that people would get resentful of line jumpers if the rumors were rampant.

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      • It takes a special kind of person to see a group of people, one of whom has disabilities, and think, “Buncha jerks.” Even if a non-zero amount are jerks.

        I’m with you on thinking the news media totally blew that outa proportion. “The number we called was disconnected. WHAT ARE THEY HIDING!?!?”

        Most importantly, enjoy the trip!

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      • Kazzy, you have a higher opinion of people than I do if you think “it takes a special kind of person to see a group of people, one of whom has disabiltiies, and think, ‘Bunch jerks'”. People really don’t like seeing other people getting special attention that they don’t even if that special attention is needed or deserved. We see this all the time in the debates about affimative action and other remedies for past discrimination and persecution. Never underestimate the power of jealousy and resentment.

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    • That, I presume is why the woman on the phone told you there were “no accomodations” for people in wheelchairs: She meant there was no cutting in line, as all of the lines are wheelchair accessible.

      It really sounds like disney needs to train its phone staff to be as polite and respectful as the park staff.

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  2. I’m so happy for the wonderful time you seem to be having with your family. I’m sure you’ll take away awesome memories.

    And a little jealous, to be honest. Living in Kansas, a Disney vaca is a major excursion that Just Doesn’t Happen.

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  3. It’s interesting that the face-to-face experience was so much better than over the phone. I also wondered if this was due to the rumors about disability scams which seem to be pretty rampant based on N=2 comments so far. This is only tangential, but one of my favorite essayists since David Foster Wallace has an interesting first-person account in the NYTimes of Disneying with kids that explores a bit of the Magic Kingdom history and the types of people who go there childless.

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    • I grew up in Anaheim and had many an annual pass to Disneyland, so I can assure that people abusing the system is true. Back in the day, people wouldn’t even rent a disabled person, they would just borrow/rent a wheelchair and use that with a perfectly healthy person. I’m guessing the “rent a disabled person” escalation was because Disney started to crack down a bit.

      I went with my wife and we are (currently) sans kids. We were not annoyed at the kids, but the park was fun and a nice bit of nostalgia. But there are definitely pot smokers at the park. At Disneyland the place where they hung out (at least back in the mid-90s) was back by the stables, in a low traffic area between Fantasyland and Frontierland

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      • Pot smokers I understand (and didn’t see many of, actually). These were mostly senior citizens. Some younger couples who didn’t give off a pot vibe, some parents with kids who did give off a pot vibe.

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      • My husband told me after I wrote this that some of the senior citizens seemed to be (for lack of a better term) Disney fanboys, or rather, fancouples.

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      • Jay and I went without a kid some years ago, for no particular reason except he was really gung ho and we needed an excuse to visit his uncles (long story). I was surprised by how much I enjoyed it, particularly the monsoon rain and the fireworks. But also the small, tacky, designed-for-kids rides – apparently my inner 7 year old was still watching World of Disney every week, and sighing wistfully, and just hadn’t bothered letting me know about it in a while. Small World was my favorite, even though I got stuck.

        It was … weirdly romantic for us? In that it was something that it turned out we both wanted to do for years, as kids, and we were sharing our first experience of it with each other. And also it was… when we went (maybe because the rain was so absurd) – everyone was *having fun*. Parents being nice to their kids, showpeople breaking kfabe just as much as they could get away with and not an ounce more, and everyone being civil to each other all the time. My analytical mind finds that creepy in theory, but in practice I was only discomfited by how lovely I found it.

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      • A couple friend of mine had a similar trip there a few years back and walked away with a similar experience. To me, childless couples there doesn’t seem odd at all. Childless couples angry about the presence of children? Fuck those people.

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  4. I’m assuming, given Disney’s concern for the bottom line and the massiveness of this operation, that their accommodations of disabilities is profitable. I wonder why other businesses don’t follow suit.

    This is probably an economies of scale thing. Disney has such a massive operation and so much traffic that they can pull it off. Also, unlike most other parks, they have side businesses that can sufficiently profit off the built up good will that even if it’s a loss on the park side, they can make it up with sales on the toy, movie and other sales. Most other theme parks don’t have such a tight corporate linkage between all of their brands. For example, Six Flags just has the rights to use Warner Bros characters, but they’re still separate corporate entities, so increased Bugs Bunny gear sales outside the park doesn’t goose the bottom line.

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    • Yeah, I was thinking that. Possibly true.But the accommodations are not a huge outlay for them. Re-fitting a few of their rides, etc. Much of it is, say, coaching people how to talk to disabled kids, providing rest areas, etc. I made a point of going to Disney because of the way they deal with disabilities. I know other parents of kids with my son’s syndrome have. My guess is that it’s directly profitable.

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      • Training and maintaining a high quality staff is probably the most expensive part. HR is hard, especially for the relatively high turnover world of theme parks. One of the benefits of the Disney mystique is that it extends to the employees* too. People who have a fondness for the Mouse are willing to work there harder for less money than they could get elsewhere. It also means that they care about the image and the brand as something more than just a paycheck. And those things matter a lot, which is why there’s a marked difference between bored sounding teens going through the motions at Knott’s vs. the cheery, enthusiastic ones at Disney.

        * I have heard it likened to a cult by people in my close acquaintance that have worked at the Anaheim park complex or in Burbank.

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      • I definitely agree that it’s the staff that makes the difference. I’m no business expert, so I defer to you on the costs of that staff.

        I had a slightly different take on the employees, though. I used to work at a union (a story and a half in itself) that had organized some of the workers – the stage show performers. IIRC (and this was over 12 years ago), the characters and some other employees were organized by the Teamsters. In our case, the union dues were quite steep. At least some of them must have been fairly motivated to organize (although in some cases, people might have been motivated to join our union because many jobs in the industry are closed shop and they may have been focused on their futures).

        I wasn’t in on any of the Disney contracts (the union opened an Orlando office to deal with them), but the fact that they did organize may be suggestive that there was some tension between management and labor.

        That’s not incompatible with drinking the kool-aid about brand identity. But some people were not happy accepting less money for it.

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    • Disney also has a corporate image to maintain. The Disney corporation has been known for providing kid and family friendly entertainment in various forms since its inception as an animation studio. Not providing accomadation towards people with disabilties, especially kids, would come off across very mean-spirited and anti-Disney.

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      • And disney will pay oodles to actually maintain that image.
        They’ll even pay for visual processing research…
        (so that the next time someone flashes the camera on the roller coaster,
        the nudity is replaced with Mickey Mouse faces).

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  5. special props to Eeyore, whom I suspect James tried to French kiss

    Did he respond to that with the proper gloomy resignation?

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  6. As so often, the story brings moisture to my eye.

    And just as we got to the point of me wondering, hey there’s three kids here, not just one, you hit that point. Of course, I’m sure they’re all out of their skulls with Massive Fun Overload — entirely the point of a Disney vacation.

    FTR as the new spokesman for childless couples going out to get some entertainment, if you think Disney World is a place to be able to avoid proximity to small, loud, I attentive children, you’ve apparently already been out behind the Adventureland stables to spark up with the sullen teenagers. Complaining that there are too many kids at Disney World is like complaining that there’s too much sand at the beach. There are plenty of places in Florida for grown-up fun. Disney World is not one of these: it’s for kids.

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    • I’m not sure my two-year-old has gotten much of anything out of this trip except an overdose of simple carbohydrates and stimulation. He was terrified by the scary parts of a couple of rides (ghosts, skeletons, etc.), and now doesn’t want to go on any ride. Today, we will start at the animal kingdom with a petting zoo so he can ease back into things (I’m assuming the other two will get a kick out of it as well).

      It’s not pure unmitigated joy for my six-year-old. He’s alternately thrilled and then quite cranky. I’m not entirely sure about the crankiness, but I think I remember feeling similarly when I was here as a kid. Maybe it’s sort of like my irritation about the hot water. He’s expecting fishing magic, and it’s lot of adults looking at maps, walking around, etc.

      For the last two days, I’ve taken the younger two back to the hotel for a nap at around 1 or 2, while my husband has stayed with my oldest to enjoy big boy rides (and toddler and disability access-free Disney). I’m doing that today and tomorrow and was going to write about it.

      I was wondering if they notice fewer stares. I was wondering how they take in the fact that people greet and speak to their brother at all.

      I may include this in the next article: my oldest son sometimes writes stories, usually about stuff he’s scared of. In the stories, he triumphs, of course. Yesterday, he went on the Haunted Mansion ride, and was terrified. Last night’s story began in an interesting way: “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 thought it was interesting that a wheelchair, which to most people symbolizes lack of ability (one is “wheelchair-bound“), was rather an empowering object. Also interesting, of course, that he attributed disability to the monsters.

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  7. We went on vacation to Disneyworld in ’05. Myself, the Hubster, my daughter, sister and niece.

    We were actually offered a DAC for my sister, as she was still a little weak from her last round of chemotherapy. She declined it, but it was nice that they had offered it to her.

    That 10 days down in Florida is one of my happiest (and most bittersweet) memory.

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      • Thanks Rose.

        The folks at Disney went above and beyond the call of duty to make sure that we had a wonderful time, and I’m glad they did the same for your family.

        As cynical as I usually am, Disney did deliver the magic for us. Their ‘cast members’ were always smiling and gracious – which I found amazing, considering the sheer number of people (normally hot, sweaty and cranky) they have to deal with daily.

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  8. Rose,

    I’m curious to hear if you ultimately find the trip worth it — both in terms of financial costs and other (e.g., Does the alternating rounds of crankiness fully offset the periods of unmitigated joy?). Your calculus will be necessarily different than most due to the unique needs of your family, but I’d still be curious to hear your assessment.

    I went to DW once when I was about 8. My grandma took me and my younger sister. I remember being… unimpressed. I’ve never been huge into rides but I still remember thinking everything was very babyish. This would have been back around 1991/2 or so, so I’m not sure what would have changed. But when I hear now what it costs for even a basic trip, I’m taken aback.

    When I look back on my childhood, I remember other trips being more resonant. I’m not sure how much of that was a function of who was there (crazy grandma versus attentive mom), how much was age, and how much was personality. I have never thought, “That DW trip was so transformative that I *must* take my child there.” But I do sometimes think, “I loved visiting that sleepy New England shore town and can’t wait to take Zazzy there.”

    You’ve obviously got a lot ahead of you and I hope that the trip proves to be worth it beyond your wildest dreams!

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    • Kazzy,

      I know you didn’t ask me, but ill give my thoughts anyway. I went with my wife, two kids (15mths and 6 years) as well as our extended family about a year ago. Against my wishes. I didn’t think it was worth the $.

      The look on the young one’s face as we rode its a small world over and over again came damn close to changing my mind. 15 month old kids are in awe a lot, this was different, in a good way, somehow. That image is etched in my mind, and the kid smiles, and smiles big, a lot, so that’s saying something.

      When my six year old was asked what the favorite part of his trip was, he answered “playing that video game with Papa before dinner”, referencing the two of us getting away to the hotel bar before dinner one night to play golden tee, which he loves. That confirmed my suspicions that we could have saved a bunch of dough and taken him to the arcade on consecutive days.

      To each their own, but I can think of plenty of ways I’d rather spend my vacation $$. Although I must admit, Rose’s story, like my son’s smile, is altering my stance a bit.

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  9. Great story (and I agree, anyone who gets mad because kids are in DISNEY WORLD is completely bonkers). I saw Mike Daisey do an extremely interesting monologue performance about (in part) visiting Disney World as an adult with his extended family. NPR has a recording, and I’d urge you to check it out if you’re interested.

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  10. I have nothing to add to your excellent story except that I have also a noticed that there are a lot of child-free hardcores who complain about kids acting like kids in child-friendly areas and activities.

    “How dare someone bring their kid to a showing of Labryinth!!?” and stuff like that.

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  11. There is a pretty deep point in this section:

    There is, however, with one major caveat. Having a child with a disability is not the whorling vortex of darkness and despair that I believed it to be when we first got his diagnosis. It’s really more of an everyday sort of pain in the ass. I often think to myself how much easier everything would be if only most families had a kid with similar disabilities.

    I understand this quite a lot. For me, it brings to mind the various critiques of *-normative (that is, “heteronormative,”“cisnormative,” etc.).

    One way of looking at disability is simply this: the world is not arranged for disabled people, in countless little ways, and most people are totally oblivious to this unless it is pointed out. And repeatedly pointed out. And pointed out more.

    Sometimes laws help. But those laws come when voters begin to see how hard this stuff is to see, and then understand that we as a society need structures consciously chosen to guide us. This applies to many things.

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  12. Wonderful article, Rose! In 1989, my wife and I visited Disney World for the first time with our two sons, then 8 and 5 years of age. We made the trip with a certain amount of fear and trembling because our 5 year old had a poorly controlled seizure disorder. However, we had heard that Disney was welcoming to disabled kids and their families, so we decided to take a chance. We weren’t disappointed. We had a great time and went on to make subsequent visits over the years.

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  13. Pingback: Visiting Disney World with a Child with Special Needs Part 2 | Ordinary Times

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