Too Bad, So Sad?

Fair doesn't mean everyone gets the same thing, it means everyone gets what they need.
(photo credit) 

Another Disney post made it's way around social media yesterday. I read it, but didn't pass it around, myself. I figured I'd beaten that horse to death, and I don't seek to be purposely annoying. People know my stance, and since all my (one-way) communications with Disney fell on deaf ears (hey, I'm not a super blogger that's going to tow the Disney line just because), I basically let it go...for now.

So, yeah, dead horse, except...something I read made me really angry. A comment made by another parent, who basically said if your kid can't access Disney like everyone else, then they just shouldn't go. I'm paraphrasing, here. There were really long comments, listing all the reasons why kids like mine shouldn't be allowed(?) to ever go to Disney, and that, sure, they'd miss out on certain experiences in life, but people with neurological or medical issues don't deserve special accommodations, so they just shouldn't go. It's just not fair to everyone else. Oh, and we are being irresponsible parents taking them, knowing it will be hard.

Now, I'm no shrinking violet, and in non-shrinking-violet form I responded. I wasn't especially nice in my comments back, for which I did feel a tad bit guilty, but I suppose when you know you're fighting a losing battle (kindness and compassion just can't be taught), you don't feel the need to play as nice as you would otherwise. I will admit I took the comments personally. Maybe they weren't meant to be taken as harshly as I read them, but the message was the same, whatever the tone.

I am sure a lot of people feel the same way as this commenter. That because my kids face certain challenges when visiting someplace like Disney, going there should be off the table for our family. Never mind that my kids, especially B, want to go, and ask to go, they just have to miss out because they aren't typical.

People being OK with any form of discrimination is bad. Teaching kids that everyone needs to receive the same exact thing, or life isn't fair, also bad. Sometimes there are individuals who need more help than others. Is it their lot to just hide away at home? Miss out on life? Live on the fringes of society, because they don't deserve to be accommodated?

This type of thinking goes against everything we say we want, when we talk about inclusion. It's separating people. Saying there are those who don't deserve happiness alongside their typical peers, because they access things differently. It's taking a group of people and seeing them as less. As not worthy. Only everything I'm trying to fight.

My kids work hard to fit into the world around them. Especially K. I mean, that girl works her tail off just to make it through the day, and I don't think it's wrong to expect others to work just a fraction of the amount to accommodate her, at times. I don't think I should feel guilty about wanting those accommodations. I don't think expecting human beings to show a little compassion for others is beyond reason.

So, to those who say I should just keep my kids home (unless I want to give this blog an over 18 rating, I can't say how I really feel), just know, we refuse to hide. I refuse to limit my children's lives. I refuse to give in to those who are mean-spirited, and who were actually born without an empathy gene.

All of this goes far beyond Disney, and it doesn't just have to do with autism. Every person on this earth deserves to be treated with respect, and dignity. Telling them to just stay home, well you might as well tell them to just not exist. None of us should stand for that.

The Disney Debacle

I'm sure you've heard about it by now, the changes Disney is making to the Guest Assistance Pass. There are many parents who are outraged, some who don't seem to take issue (bloggers who are probably towing the Disney line.) Then there are those outside the special needs community who think we are all just crazy, or entitled, and undeserving of any accommodations at all.

I want to share with you our Disney experience. Maybe that will help people understand why the disability pass was/is so important to families like mine. 

We went to Disney when K was 6, during April school vacation. I had heard of the disability pass, and made sure to secure letters from doctors and therapists, stating why we needed the pass, and outlining K's diagnosis. I wasn't sure if we'd need proof, but I wanted to make sure I had some, just in case. 

Now, there was part of us that really didn't think we'd needed the special accommodations. We actually attempted the Magic Kingdom without the pass, but while waiting in line for the Jungle Safari, our first ride of the day, we quickly realized we needed to hightail it to guest services. You see, it's not just about waiting in line. I am sure there are a lot of typical kids (and parents) who would prefer not to stand around for 30-60 minutes, or more, to get on a ride. The difference is, they don't have sensory issues, heat intolerance, low muscle tone, or communication issues, which hinder their ability to wait. Which makes their anxieties soar through the roof. Which leads to a meltdown, necessitating a quick exit from the park, and a lost day at Disney.  

Once we secured our pass, it wasn't like everything was perfect. My daughter didn't cease being autistic just because we held a little disability card in our hands. It was still tough, but not as tough, being that we could wait in a shaded area, with less people (read: less noise!), less sun, and less physical demands on a kid whose muscles weren't up to par with her peers. It meant less stress for my daughter, less anxiety, and less demands on language skills that were not the same as your typical 6 year old.  

The new pass seems to be a lot like Disney's FastPass. You go to a kiosk, and you will be given a return time for the ride. Actually, I'm not really sure what the difference will be, except I guess you could go actually FastPass another ride with your ticket, and have 2 rides to wait for, instead of just one. (I am also not sure what families are supposed to do for rides that won't fall under this new disability fast pass, because from what I gather it doesn't cover all rides.) This, of course, entails a lot of waiting. Sure, you don't have to stand in line, but you do have to figure out what to do with your kid(s) while you wait. 

Some have suggested families could go see a show, and I tell them about the shows we tried to see the last time we visited Disney, and how my child ended up either sitting in a corner, rocking and crying (Little Mermaid show), or trying desperately to escape the dark, loud theater (Bug's Life Show). Shows are not an option for us. Even though K is older now, she is still the same in a lot of ways.

I guess we could walk the park, while we waited. I'm sure that wouldn't make K's heat intolerance, or endurance issue, worse. I'm sure walking around a very crowded, very noisy, theme park for an hour wouldn't bother her at all! All the sights, sounds, smells, would be a constant assault on her sensory system. Her anxiety would stay at bay. We'd easily be able to communicate with our daughter. It would be fine! (You get the sarcasm here, right?)

As it was, we couldn't make it through a full day at any park. The pass allowed us to do as much as possible, before K really hit the wall. The new pass will not allow us the same. We will spend the short time we have waiting for our "return time" to come up.  We pay for our tickets, just like everyone else, and making accommodations so our family can have as magical an experience as everyone else doesn't seem like too much to ask. 

There are those who don't think we should bring our kids to Disney, at all. That clearly our kids don't belong there, if they can't handle it like any other person. I really don't have much to say to that. If someone truly believe my kid doesn't deserve to go to Disney because she's autistic, I am not going to waste my time addressing them.

The thing is, the parts of Disney K loved, she loved. Small World brought her joy I can't even describe in words. The safari at Animal Kingdom, for a girl who is so connected to animals, was pure magic.  

And you know what? We didn't abuse the pass. There were tons of rides B wanted to go on, that K wouldn't go near, but we never once entertained the idea of using the pass so he could skip the lines (at the time Ben had no diagnosis, and was fine waiting on daddy's shoulders.) When he wanted to ride Pirates of the Caribbean, he and my husband waited in line. When he wanted to ride the Haunted Mansion, he and I stood with everyone else. We got the pass for K, and we used it only when K went on a ride. 

So, entitled? I think not. 

It's a shame that there were people who abused the system. Who hired disabled tour guides so they were able to skip the long lines. Since Disney doesn't ask for proof of disability, I am sure there were others who took advantage of the system, as well. However, I don't think the changes Disney is making are a good idea, or the best way to respond to the problem. I am also curious about how large a problem it was, that Disney thought ripping the rug out from under special needs families was the answer. Was it truly a far reaching epidemic, or did Disney just feel the need to respond after the Manhattan Moms story came out? Not that I am saying any level of deceit is OK, I am just saying families like mine shouldn't be the ones punished. 

Bottom line: every family deserves to have a magical experience at Disney. Making it impossible for many special needs families to enjoy the parks is beyond wrong. I really hope Disney realizes just how much these changes are affecting families like mine, and tries to find a better way.