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| Old Disney castle logo. Image source. |
It has recently come to my attention that, because I live in Shanghai, I can go to Disneyland any time I want. (Or rather, any time I want to pay 1000 RMB [150 US dollars] for tickets for me and Hendrix.) Shanghai Disneyland opened in 2016. Click here to see my photos from the first time I went.
The most recent time Hendrix and I went to Disney, we watched a pirate-themed stunt show. Right at the beginning, as they opened the doors for all of us to come into the theater, one of the pirates cracked a whip and HOLY SHIT THAT'S LOUD. I guess I've never heard a whip sound in real life, just in movies where there's a limit to the loudness. I was scared, didn't know what the sound was or where it came from, I didn't feel safe, we walked in with the rest of the crowd and found seats and Hendrix kept telling me "we can leave if you want" but I said no.
So we watched the pirate stunt show, and I covered my ears for the whole thing, but I was still able to enjoy it mostly. The stunts were really good and it was cool to hear pirate-y dialogue in Chinese.
Afterward, I was thinking about my needs, and what could have been done to make the experience less overwhelming and stressful. I decided that what I really would have needed is a detailed description of everything that happens in the show, sensory-wise, and maybe even a video to watch. I need information in order to make a decision about whether I'd like to participate or not. And for the first time in my life, I thought, yes it IS reasonable for me to ask for that information. Autistic people really do need that kind of information; if you don't provide it, you are excluding us.
See, I'm coming to the realization that having different needs than other people means that I need to be the one in control of my choices. I need to have the relevant information, and the power to make decisions for myself. Nobody else knows better than I do what I can and can't handle. I always thought being "disabled" meant "you can't do this, you can't do that"- but now I'm starting to think what it really means is, I have different needs than other people, and in order to know whether a certain activity will be safe for me, I'm going to need very very specific information, and I'm the only one who can make that decision. It has to be me, not society-wide rules about what autistic people can or can't do. Before, I thought disabled people should get fewer options- "you can't do this, you can't do that"- but now I think we need more. More information, more ability to stand up for ourselves and communicate clearly about our needs, more decision-making power.
(This is why I wonder whether getting an autism diagnosis as a child would have been helpful for me or not. I was diagnosed around age 23. If I had a diagnosis as a child, would it mean "you have the power to decide whether or not to participate in activities that could be potentially overwhelming for sensory reasons, and adults NEED to respect your decision" or would it mean "we're going to exclude you from things all the other kids are doing, we decided that you can't do it"? If it gave me the power, that would have been an EXTREMELY EXTREMELY helpful thing for me as a child, and I would have avoided a lot of trauma. If it meant adults deciding to exclude me from this or that fun thing, because they decided I can't do it, that would have caused even worse trauma than what I did experience when I was a child.)
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When I was a child, I remember going on the Indiana Jones ride at Disney World or Disneyland. It wasn't a roller coaster, it was a bumpy old car on a track, that drove through various Indiana-Jones-themed scenes. I'm not okay with roller coasters that have big drops, but this ride didn't have any, and there's not really any obvious reason to suspect that it would be too overwhelming for me in terms of sensory stimuli. But still, I remember, I didn't want to go on it. I guess it was because I didn't know what it would be like, and I didn't feel safe. (You can't see any part of the ride without actually riding it.)
But I did ride it, with my dad, because my parents pushed me and I was a good kid who followed the rules and, even though I told them I didn't want to ride it, I didn't feel like I actually had the right to outright refuse. So I rode it, sat in the bumpy car with my head down, eyes closed, ears covered. For the entire thing.
Afterward, my parents asked if I liked it or not, and I said, "I don't even know what happened, I had my eyes closed the whole time."
And I remember, I told that story a few times, afterward. Maybe to a teacher who asked "How was your trip to Disney World?" And that last line there, when I said I actually have no idea what the ride even was, because I had my eyes closed the whole time- it kind of reads like the punch line to a joke. And people laughed when I told the story. Maybe I felt good, a little bit, that people thought I was funny. Or maybe I was confused about how I felt, how I had been pressured into riding this ride when I didn't want to, how it felt normal because that ALWAYS happened to me at amusement parks, how the adults told me it was fun so it was difficult for me to even recognize that I wasn't having fun- that mess of confusing and contradictory emotions, and I told that story to try and find someone who could understand and care about my feelings, but when they didn't understand, I just pretended it was a joke.
That's happened to me on multiple occasions- when I tell the real, honest-to-goodness truth about very deep, personal emotions, and people say "wow you are so funny, you have such a great sense of humor." I don't really know what to say to that.
So I mention the Indiana Jones story here because it's the perfect example of what has been happening to me, my entire life, at amusement parks. How people have always pressured me to go on rides, and then I hated riding them, and nobody understood.
I like amusement parks, really I do, but I'm not okay with big drops or loud sounds. I like going fast- I totally loved Test Track, a ride at Disney World in Florida which takes you through what's supposedly a bunch of tests for a new car, ending with a few laps around a track at over 60 mph according to wikipedia (SO COOL). I like rides that spin. And I'm fine with being high if there's no "falling" feeling when we come back down (ie I like the swings that lift up really high off the ground and spin around a bunch of times). And at Disney especially, it's so cool looking at all the artwork surrounding each ride, how the make the scenery and such. But, as I said, not okay with big drops or loud sounds.
And so, every time I went to any amusement park as a child, there were some rides I didn't want to ride, and there were people who tried to talk me into riding them. Mostly my parents- and I don't really blame them, I'm not mad at them for it, they really did think it would be good for me to just try once and I would have fun.
But here's how it played out in reality: An adult would try to push me into riding a ride that I thought was "too scary." And even though I felt comfortable "talking back," telling them why I didn't want to ride it, I saw the adult as the final decision-maker. It never occurred to me that not riding was an option- I thought I was only allowed to not ride if the adult okayed it. You know, because I was a good kid and wanted to follow the rules, and I wanted the adults to think I was good instead of "strong-willed" and "stubborn." (Indeed, there have been many many occasions when I felt incredible relief, hearing my mom say I don't have to ride this or that roller coaster. Because I always believed it was the adult's decision, not mine.) So then, sometimes I would ride the ride. And not like it. And then when it was over, the adult would say, "see that wasn't so bad, that was fun, wasn't it?" And tell me I was good and "brave."
They always said it was "fun," and it was difficult for me to recognize that I wasn't having fun. I didn't understand that people choose to ride those rides because they like them. I thought that when you go to an amusement park, you are "supposed to" ride certain rides, and my request to be exempt was a bizarre anomaly that went against "the rules", so people didn't have to respect it.
It was like when you go to the doctor and get a shot. Just sit and brace myself and wait for it to be over, and then afterward the adults tell me I am good and "brave." Same thing.
When I talked with Hendrix about this, he said some people might be scared of a roller coaster but they choose to ride it anyway, because afterward they feel a sense of accomplishment, like "it was scary, but I'm glad I did it." Okay, sure, that makes sense, but that's NOT how I felt. When I had survived the scary ride, I was glad because that meant people would STOP BOTHERING ME ABOUT IT. I didn't feel good about myself for achieving something. I would have been happier if nobody had pressured me into it in the first place, followed by a grand finale of me not riding it. When I rode those rides, I did it for other people, not for myself.
The log ride is another example that comes to mind. It's not a roller coaster, just a log that bumps along down a little river, culminating in a big drop with a big splash. My parents didn't push me into riding big roller coasters, but the log ride is less "scary" than a roller coaster, so that was one of the ones they totally did push me into. And I liked the "bumping down the river" part but not the big drop at the end. Actually, it would be totally perfect if there was a point where you could get off the ride just before the big drop at the end. As I write this, I'm like, hey why don't they make a ride like that, surely there are a lot of people who would love to get off and skip the worst part, and then I realize, oh wait, most people actually LIKE the big drop, maybe they even think it's the best part. That's mind-blowing.
The log ride. I think now I would like to ride a log ride, now I have a bit higher tolerance for rides that fall, but when I was a little kid I totally hated it. (At the time, though, it never would have occurred to me to use the word "hate"- the adults said it was "fun", so I would have called it "fun" and then felt very confused about what my emotions were.) But as I said, I felt I didn't have the option to say no. Yes, my parents knew I didn't really like it, and sometimes the family would split into 2 groups and my group would do rides I liked, not the log ride- yes, my parents took my feelings into account, but it was always their choice, not mine. (Kind of like a complementarian marriage, yes?) I felt like I was asking for something "weird" and "against the rules." If things worked out so it was convenient for one of my parents to stay with me while the rest of the family rode the log ride, then okay fine, but if not, then tough luck, I have to ride it.
I remember one time in elementary school, in art class I drew a picture of my family riding the log ride together. We were coming down the big drop at the end. And now I wonder, why did I draw that, if it was such a traumatizing thing for me? Maybe the assignment was "draw you and your family doing something fun together" and I knew everyone said the log ride was "fun." Or maybe that part was the part that I remember the clearest, and, just like with the Indiana Jones story, I was trying to work through a lot of confusing emotions. (I remember another time I drew fireworks in the context of "here's something cool we did on the Fourth of July" even though fireworks are way too loud and that sound is literally painful for me and actually it turns out I hate them.) Maybe I was trying to find someone who would care about and understand my feelings, even though I didn't even understand them myself.
"Fun." Throughout my childhood, I experienced things adults described as "fun" as an extremely mixed bag. But I trusted the adults- if they said this ride was "fun", then I would also say it was "fun."
And even now, now that I am okay with a bit of falling and there are some roller coasters I really enjoy, I feel weird about telling my parents that I rode this or that roller coaster. Because if I liked it, it feels like I'm saying it was okay for them to force me into riding stuff like that when I was a little kid.
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So after what happened at the Disneyland pirate stunt show, and after I came up with the idea "they should provide details about all the sensory phenomena on all shows and rides, if they don't want to be excluding autistic people," I started looking around the internet for resources with that kind of information. I found the California Disneyland website has a page about services for guests with autism. But on that page I read about the Disability Access Service, which is like a fastpass- disabled people can get them so they don't have to wait in line. And when I read that, I kind of ... recoiled. No, I'm not like that, I thought. I don't have autism so "bad" that I can't wait in line. (Though, yeah if I'm already stressed for other reasons, I can't stand being in a crowded place with no escape routes, so yeah I can understand how for some people, waiting in line for a long time can be totally unbearable.) And I felt like, I don't want to read this web page anymore, I don't want to be associated with people who are so ... "bad" that they can't even wait in line.
And then I realized, that's ableism, and that ableism has prevented me from looking for resources that actually would be helpful for me. See, I always thought it's "bad" to be disabled, which means that if I can just act like a "normal person" and not ask for special help- if I'm able to do that, then I SHOULD do that. And, you know, I can. Sort of. I go into these situations with overwhelming sensory stimuli, I feel I have no choice, and sometimes I cry and everyone looks at me and I feel embarrassed. And that's just what my life is. That's my "normal." And I saw myself as "weak" and "too emotional" and too easily scared. But I can, I can go into those situations and survive through them. As I said, it's like getting a shot at the doctor's. And I thought, since I can, I should. And I shouldn't ask for any extra help that's different from what a "normal person" would.
I was a good kid that followed the rules. Plus in Sunday school we learned that good Christians deny their own needs and do what others tell them to.
But anyway. Back to the Disneyland autism page. So the part about skipping the line doesn't apply to me. The part about wheelchairs and strollers doesn't apply to me. A lot of it doesn't apply to me. But then there's this bit:
Attraction InformationThis is the bit about sensory stuff in the attractions. Nothing else on that page applied to me, but this, this is what I need. I really really really need this.
Attractions at the Disneyland Resort offer a variety of different experiences that may be challenging for Guests with cognitive disabilities. These include scents, high-speed movement, flashing lights, loud noises and periods of darkness.
For more information about what experiences to expect as well as how long each ride lasts, please download Attraction Details for Guests with Cognitive Disabilities.
You can also view general descriptions of the attractions at the Disneyland Resort.
That link there, Attraction Details for Guests with Cognitive Disabilities, is a pdf that lists all the attractions at California Disneyland, in chart form with columns for "Scents/Smells", "Flashing Lights", "Loud Noises", etc, and then a mark in each column to indicate the attraction has or doesn't have those things. Yeah, that's really helpful- but still not enough information for me, actually. First of all, there's no column for big fast drops. There are "Bumps", "Fast", and "Lifts Off Ground", but... none of those are the same thing as "this is a roller coaster with a big drop." Furthermore, this information is all binary- it just tells you whether the ride has or doesn't have those things. It needs to be a lot more specific in order to be useful. I like small roller coasters- it's fun to have small drops, but not big ones- but my definition of "small roller coasters" will be different from other people's, and as an adult I have a higher tolerance for falling than I did as a child. (For reference, the Seven Dwarfs Mine Train is exactly the perfect roller coaster for me.)
Obviously, most roller coasters are outdoors and you can just look at them from a safe distance and get all the necessary information that way. Indoor rides are a different beast because, without riding them, all you have is secondhand accounts, other people's opinions on what's "fast" or "not that bad." I fully intend to never ride an indoor roller coaster, and to live a totally happy life without it. (Like, don't feel bad for me "missing out on a fun experience"- you should feel good about me having the freedom to say no when I don't feel safe.)
Also, the "Loud Noises" column. Not specific enough. In actuality, I'm okay with loud-ish noises in general, but NOT with sudden loud noises. Loud music and crowd noise are generally fine for me (and at Disneyland, the music and announcements played over the speaker system are much louder than average sounds in my regular life, but it doesn't bother me at all), but anything with a sound similar to an explosion (fireworks, whip cracking, etc) is incredibly painful. Or rather, let me clarify that too: It depends if you're indoors or outdoors. Outdoors, a lot of those loud things end up not being painful for me because just the sheer amount of open space allows the sound to spread out and not be as loud (fireworks being the obvious exception to this). So there are a whole lot of variables and it's very difficult to really get enough information to know for sure whether a certain sound will be unbearably painful for me.
BUT ANYWAY. That pdf from Disneyland is a good start. Combine that with my newfound realization that I totally do have the right to ask very specific questions and expect people to take my needs seriously- that I'm NOT being "selfish" or "weak" or "scared" when I insist that I have needs different from "normal people."
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Sometimes I think my sensory problems are getting worse, but that's not true. When I was a little kid, there were a lot of smells, tastes, and textures that were unbearable for me, but now those issues are either totally gone or much less severe. Sound, though, is the thing that hasn't changed- and sometimes I feel that it's gotten worse because I'm unwilling to put myself in situations that I would have allowed myself to be in before. Now, if there's a risk of hearing the kind of sound that's unbearably painful for me, I just leave. I don't force myself to stay there and "be brave."
As a little kid, I did my best to follow the rules and "be good." Instead of communicating that I wasn't okay with a certain situation, I just tried to go along with it and be like the other kids. I didn't realize they weren't all feeling the same way I did- I didn't realize that the adults didn't *get* how overwhelmingly painful some sounds were for me. Asking to sit out of those activities would have felt like asking if I can just not do my homework- like yeah, nobody likes to do homework, but we all have to, that's the rules. I didn't understand that the activities which were "too scary" for me were actually intended to be fun, and if I'm anxious or suffering sensory pain rather than having fun, then YES OF COURSE I should be allowed to skip it.
I internalized the idea that I am weak and too scared, and I need to "get over it" and stop making trouble. And that was normal for me- that was my normal life. Usually everything was fine and happy, but every now and then I would experience overwhelming sensory pain, and everyone would act like there was something wrong with me, and ... yeah that was just a thing that sometimes happened to me. It was my normal life; it never occurred to me that maybe there are things that we can and should do so I don't have to experience that.
And now I don't put up with that crap anymore. So I avoid a lot of things I would not have avoided as a child. Because now I believe my needs are real and they matter, and that I have the right to not put myself in situations that are likely to cause me anxiety and sensory pain. I never thought I was allowed to do that before. I thought it was "selfish" and "sinful" to put so much effort into caring for my own needs.
I no longer try to "be normal." And while, to an outside observer, it might look like I've "gotten worse," it's actually better, so much better.
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Back then, what would have been helpful is if adults had told me clearly that the choice to ride or not ride a "scary" ride is mine alone. I don't think they realized they were pressuring me into it and I felt I didn't have the option to say no. It would have been helpful if they presented their reasons why I should ride the ride, that's fine, we can talk about it freely, but the final decision is absolutely mine and mine alone. If I had known that I could decide, "They think if I go home today without riding it, I'll regret it- but that's ridiculous, of course I won't regret it, and therefore their reasons don't apply to me so I'm going to go ahead and say no"... wow. Wow. That's mind-blowing, stunning, unimaginable. That would be heaven.
I mean, wow. That would be life-changing. Feels too good to be true.
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I live in Shanghai; I can go to Disneyland anytime I want. I love it, I really do, but there are always some sensory issues. And the first step in addressing those problems is recognizing that yes, I do have real needs, they matter, and it is right for me to take steps to avoid things that will be painful or "scary" for me. Even though, when I was a child, the adults told me I was good and "brave" when I pretended I didn't have those needs.
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Related: Autistic at the Aquarium
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