I grew up near Disney World. It felt like the kind of magic that Christmas holds - the same kind of wonder. Now an adult with a child of my own, I'd thought about a Disney visit, but knew, because of Jack's sensory reactivity, it wouldn't be a good choice.
Then something surprising happened. Jack began loving steam trains. Disney has one. And he loved spookiness. Haunted Mansion, anyone?
So we went to Disney World last year for Jack's birthday. It was a dream. We knew we wanted to ride the steam train only, but if Jack was open for The Haunted Mansion, we were prepared. We'd watched the WDW train on videos. We rode a steam train in Tennessee. The videos showed us that the WDW train went through two tunnels, important to know since tunnels are frightening: pitch black and loud, especially if kids scream. And the Tennessee steam train showed us that whistles are loud if you're too close to the engine, but enjoyable further away. So we were prepared.
Explaining the The Haunted Mansion was easy. A favorite ride of mine, it was so familiar that I could reproduce each room and action that happens. We trolled YouTube for videos of the announcer's script, the singing gravestones, and the ride itself. We rode through our version of the ride many times. "Again!," Jack would cry. I was his personal doom buggy.
We made several short trips to Disney hotels, like the Polynesian, for ice cream and shopping at the gift shops. So when Jack asked to ride the steam train, I thought it would make a perfect birthday trip.
It did. We rode the train and The Haunted Mansion, AND the race cars, AND the Peoplemover, when Jack spotted those and wanted to try them. Then we headed home. Jack loved it.
The one thing that made it even possible was the Guest Assistance Card. This card allowed us to go through the disabilities entrance, usually a side or back entrance, so that we didn't have to wait in the long lines.
Why don't we want to wait in long lines like everyone else? Here's where I need to break out the medical jargon. Jack's autism includes hypotonia, high sensory reactivity, motor skills problems, auditory and visual perception problems. Hypotonia means Jack has very low physical endurance. He can neither walk long distances, nor sit for a long time (sitting takes core muscle strength), no tolerate temperature extremes. He has difficulty judging depth and distance, which means I often must carry him (off and on vehicles, toys, play structures, bathtubs, carousels, beds, etc), or guide him physically, or move his limbs. Jack is highly reactive to certain visuals, like flags, dresses, crowds, and to certain sounds, like people talking at once and ... to crowds. He doesn't climb, balance, or coordinate movements well. He's photosensitive to bright light, sunlight, and flash photography. Jack's autism means he can't communicate when he's near a breaking point, only after he's reached a breaking point. And, often, that's too late to help him.
2. The Barrier
So this year, when Jack wanted to see the train, the steamship, and Snow White's ride, I didn't hesitate. I thought GAC card! No problem! After arriving at the Magic Kingdom, we went straight to WDW City Hall.
Me: We'd like to get a disability access card.
Erick, guest relations: We don't have that.
Me: The Guest Access Card?
Erick: Why do you want one?
Me, puzzled: The card you show for disabilities that allows people to move forward in line.
Erick: You can't get to the front of the line.
Me, frustrated: My son has autism. He can't stand in line.
Erick, reaching for a card: All it does is give you a comfortable place to wait.
Me: That's what we want.
So then my husband tried.
Hubs: Last year, we were here and we got a ...
Erick, interrupting: Our policies change all the time. All you can get is a comfortable place to wait.
Erick handed over the card. But his message was clear: we were trying to cheat the system.
After we went to the rides, we realized, Disney had indeed changed their policy. At three rides, we presented our GAC to the ride attendant at the line and, at all three rides, we were instructed to wait in the regular line. None of the attendants took the card or even looked at it. They merely looked at our party, saw no apparent disability, and waved us back to the regular line.
Waiting in lines took a mere ten minutes at the train, ten minutes at the Haunted Mansion, and ten minutes at Pirates (a detour since Snow White had closed). It doesn't sound long to me, having seen two-hour wait times there, and I'm sure it doesn't sound long to WDW employees. But remember all those challenges I mentioned? Hypotonia, high sensory reactivity, motor skills problems, auditory and visual perception problems? It doesn't matter how short the line is, these things are still a problem.
At the fourth line, after five minutes, I realized, too late, that Jack was past his breaking point. We ducked under the rope line and headed out.
At all the rides that day, people with mobility disabilities like wheelchairs and scooters were shown to the disability entrance. But we weren't. What was going on?
I read the GAC card:
Walt Disney World Resort is committed to providing access to as many Guests as possible. Specific accommodations are made for mobility disabilities, hearing disabilities, visual disabilities and service animals.
Not developmental disability. Not neurological disability. Not autism. So it was the particular kind of disability that my son has that was different. You can't see it. It's not a wheelchair, a white cane, a hearing aid, or a service animal. It's not physical. It's a disability of the brain.
3. Non-Apparent Disability and Accommodation
Which had me wondering: What is disability? What is accommodation?
When most people think of disabilities and access, they think of ramps, handrails, elevators, or automatic doors. According to Disney's policy, disabilities that receive accommodations are physical ones: mobility, hearing, or visual disabilities. So Disney's accommodations include removal of physical barriers, like stairs or narrow doorways, providing alternate entrances, posting signs and information that point the way from inaccessible areas to accessible areas, or providing devices that allow individuals to read announcements, rides, or shows, rather than hear them.
Disney provides no information about developmental disabilities nor about autism accommodations.
It's possible that this absence is an oversight. When the average person thinks "developmental disability," they tend to think "intellectual disability." They don't think of physical access or barriers for intellectual disabilities. Persons with intellectual disability are capable of standing in line. As long as Disney isn't barring entrance for them, maybe WDW thinks they have access to the parks. They are non-disabled in Disney's policy because they are physically able-bodied.
It's possible that Disney doesn't understand autism. Though 1 in 88 children are diagnosed, many people aren't aware what autism actually means, like the hypotonia, high sensory reactivity, motor skills problems, auditory and visual perception problems for my son. It's possible that Disney employees believe, like so many people, that autism is merely a behavior problem. Maybe they think it's just that our child tantrums easily and we don't want to stand in line with a tantruming child.
So maybe it's an education issue. And maybe autistics will have to show a doctor's letter at Disney and educate WDW, one cast member at a time.
Or maybe it's more serious. What if Disney's attitude represents a general bias against neurological differences. If you can't see it, how do you know it's real? If it's in their brain, why can't you just teach them to stop? How do you know that they or their parents aren't just making it up? That they aren't just trying to cheat the system?
Legally, Disney is prohibited from asking a disabled person to "unnecessarily identify the existence of a disability." That's the ADA law. But that's exactly what we would have to do to convince Disney employees that my son needed accommodation. And not just one time at City Hall to get the GA card, but each time we wanted to use the disability entrance at a ride, since we were turned away by each ride attendant.
Guests and Disney employees alike reason that proving disability is necessary because of abuse of the system by people pretending to have a disability. Examples are renting a wheelchair, and heading over to get a GAC ( here, here, here) and a site that encourages people to fake it and ask for a GAC to avoid long lines.
But abuse of the system could happen for apparent disabilities, like physical ones, too. See the wheelchair example. If physical disabilities don't need to be proven, should hidden disabilities like autism have to be proven? Isn't that discrimination based on a specific disability?
If we think, well, of course it must be proven precisely because you can't see it, that's not good enough. A disabled person must request accommodation for his disability, not prove it. ADA doesn't say that a person with a non-obvious disability must prove it. Disney guests may bring in scooters, borrow a wheelchair, or get a TTD device without proof. The only difference is that the disability is neurological - and we are skeptical and distrustful of brain differences as a society.
Abuse of the system is not a good enough reason either. Non-disabled person's abuse of the system should not shift the burden to disabled persons to prove disability. That's a problem with the system, not the disabled person. But that's exactly the kind of burden-shifting going on and one that reveals the prejudice against non-apparent disabilities.
Because Disney cannot legally ask for a guest to identify or prove his disability, Disney has given its employees the power to decide that a person is not disabled by how he looks, sounds, or communicates a request for accommodation. It's bias against neurological differences to think an employee can tell by looking or talking to the person. It's unequal treatment to have an unwriitten policy of screening individuals for disabilities. It's unequal treatment to require further proof of disability without notifying the public.
I also worry that this kind of public bias against non-apparent disabilities will bleed over to the disability community. The apparent/non-apparent binary reminds me of the race discrimination internalized by African-Americans for a hierarchy of skin color, with lighter judged as better and darker as less desirable. Does the public and the disabled community prioritize physical disabilities over neurological differences? Will the autistic feel less believed and less valued even in the disability community? Is the neurologically disabled person segregated and isolated because "you can't see it."?
4. Accommodation without Discrimination
Maybe this Disney trip highlights my own mistakes in overestimating my son's endurance. Maybe I should have gotten a wheelchair. Maybe it reveals my own subconscious prioritizing of disabilities and a limited pie belief. As in I don't want to take a wheelchair from someone who really "needs" it. I'll take responsibility for those.
But when I do have my son use a wheelchair or large stroller and he gets up and happily run-dances, we will be judged again on his non-apparent disability. Disney and the public will cast its wary eye, sure in their judgment of our bad motives.
Will he be constantly proving his needs? Will he feel devalued and dehumanized each time he must?
There is a clear direction for further ADA rulings, for disability advocates, and for those companies like Disney that profess to be disability friendly. Autism is real. It is a disability. It doesn't require your approval or even your judgment. We demand the autistic version of ramps, handrails, and automatic doors. Already in place without having to ask or prove ourselves. An entire force of autistics, their families, and their allies are ready to shatter your barriers and your biases.
And one day, there will be an Autistic Pride Day at Disney.
Edited: Read part two here - Autism, Disney, and the Bigger Problem.