Until It Really Hurts

I am a student of social studies.  History, government, economics.  When i taught, there were basic lessons that i would often drive home to my students as they repeated themselves in history.

  1. hungry people will mess your shit up and
  2. those in power ACT when their earning are in jeopardy.

There were a few more lessons in there, but these made up the core of my teachings.

Now, I am no longer a part of the education community, but it doesn’t mean I don’t like to pontificate from time to time.  I mean HELLO.  I HAVE A BLOG, FFS.  You can take the teacher out of the classroom, but you can’t stop the egomaniacal need to hold people hostage with the sound of our voice…  or something like that.

Anywhatzits…

So, Disney.

YEAH.

The new disability process went into effect on Oct 9.  And a few autism parent bloggers and friends with season passes have hit the parks to check out how it works for our kids.

And it doesn’t look good.

As any good teacher, let me start with a review:

IMG_20120229_133908 It used to be you could get a GAC to help your special needs kid (or adult) maneuver through the park in a fashion that would allow everyone in your part to enjoy the park on your terms.  I explain the old process here.  And while it worked for MANY if not all of us, it was also open to flagrant abuses—some of which made stories on the Today show—which we all know is a BASTION of unbiased, informative NEWS. (insert eyeroll here)   Anyway, once stories of the abuses came to light, so did the patience of those who did NOT have access to the special passes—and cries of “unfair!” arose. (and can I say we all knew about the abuses—those of us standing in those lines WITNESSED IT but had no idea what we could do about it other than waggle our fingers at those wayward teens.) So a new plan arose that makes our kids go and, in a sense, get special fast passes at each ride (WDW) or at special kiosks (WDL) so that our kids get to see the ride, but don’t get to ride right away.  They have to wait the current wait time—just not in a line—until they come back to stand in the fastpass line. (or the handicap access line, depending on the ride).  And once it was announced the interwebs blew up in attacks that this would be more fair because we were obviously just abusing the system.

And our kids bore the brunt of those attacks.

I know I’ve been questioned.  Why does YOUR kid get to get on the ride right away when we don’t?  Why does YOUR kid deserve special treatment?  My kids has been called a privileged brat by internet trolls.  My kid—whom they have never met.  Who may never hold a job, or leave home, and who will have to fight tooth and nail for every thing in life because others can’t SEE his disability.  My kid, who doesn’t have a mean bone in his body, and who would more than likely try to be your friend, even if you are mean to him.  My kid who works EVERY DAY to understand and navigate this world that will refuses to give an INCH for him, but for whom he must change everything about himself in order to “fit in”  ASK ME AGAIN WHY HE DESERVES IT.

But I digress…

Because here’s the problem.  No one questions the rights of those in wheelchairs, like my own dear Aunt,  to have access to the handicapped lines. In fact this account of a recent visit even says that they witnessed people in wheelchairs pretty much having instant access as they did before.  But our kids—whose disability may not be 100% VISIBLE–are questioned at every turn.  That same blogger even mentioned that she had to announce his diagnosis more times on her visit than she ever had before.

So, in a sense, we have to “prove” our kids disability again, and again and again.

Ad we have to pay $75 per family member for this?

Now that same blogger actually had a good time and the system, while setting off a few privacy red flags, pretty much worked for them.

And to be honest?  It would work for my family too.  My son is what some would call “high functioning”—which is to say I can “reason” with him,  he can voice his frustrations without meltdowns (after years of hard work, I might add), we can have conversations about what is going on, and I can use every tool in my ABA and Floortime toolbox to help him navigate a system that, to be fair, is still working it’s kinks out.  Disney’s new plan does not remove it as an option for us behaviorally.

It is, however, off the table for us.  Let me tell you why.

While this system would eventually work for us, there are many families (some of my son’s friends even) for whom this plan will never work.  For whom the back and forth from ride to wait time is just NOT a viable plan.  Kids and adults who cannot just be told they can come back later and hey, let’s go have a corndog.  Because our kids perseverate.  My own son, whom I have claimed can handle this—when faced with a similar scenario at the opening of the Cars Ride at CA Adventure, spent the 90 minutes we had to wait FREAKING OUT.  Even though I was doing everything in my power to distract him, he spent all that time perseverating on getting back to the ride and riding it—which means he did not enjoy ANY of the things we did in that time.

This is what some (most) of our kids deal with on some scale of intensity.  DAILY.

But while my son has the ability to voice his frustrations, others cannot.  And the frustration they feel can physically manifest into a meltdown.

This perseveration can also manifest into the need to ride the same ride OVER and OVER. Or a number of times within the hour.  I’ve heard of some families that ride the same ride 5 x in one hour—and that’s pretty much the only ride they hit while they are there.

These families, although given lip service by Disney in a letter saying they would work with families on a case by case basis, are in fact NOT getting that and told repeatedly that this is the new system.  Even though they are told they want feedback—this one blogger had all of her ideas shot down.  That’s not listening—that’s patronization.

So, even though my family is in a position, both geographically and financially to purchase season passes, we won’t.  Even though this new system would probably work for my child, we aren’t going.  Even though my son really loves Disney, we are not going to spend ONE DIME on the park, and try our damnedest to not purchase any merchandise from the company.

Now, one person refusing to buy Disney products is hardly going to make a dent in third quarter profits.  I get that.  But the fact is, I cannot spend any money on them while they continue to disenfranchise the one group that would support them into eternity.  Our kids tend to LOVE Disney stuff.  I can’t begin to tell you how much Cars paraphernalia is in my son’s room.  Not to mention the fact that many Disney stories tell of characters who are deemed “different” and yet rise above the beliefs of others to achieve great things.  HELLO?  Symbolism, PARTY OF US.

DSCF4767

Just not worth the ears, kid.

And you may be thinking, Why punish your son because of this?  What are you teaching him?  I’ll tell you what I’m teaching him.  I’m teaching him to stand up for those who do not share our privilege.  That it is the role of those in power to help those who do not have it.  In the old days it was called Noblesse Oblige.  We are OBLIGATED, as people who see the injustice, to stand up and try to make a difference.  Even if it means never going to Disney again.

And if anyone doubts our resolve, I have not stepped inside a Wal-Mart for 20 years.  Even when our family was in difficult financial times.  RE. FUSE.  Because I see their injustice as clear as day.

Now, before you start trolling me, I’m not calling on any other person or family to make this same decision.  Because that isn’t my bag.  I am just going to witness, quietly, by doing my best to live a life that matches my ideals and conscience.  If I am the only one, well then, Disney won’t give a rat’s ass.  And they will go on being a corporate entity that continues to feed this national idea that invisible disabilities don’t matter.

But I have a feeling I won’t be the only one. Disney has lost a lot of Autism business with this decision.  (and business obviously means a great deal to them since their ticket prices are so extravagantly expensive)  And hopefully, it will affect their profits just enough that they finally live up to their promises to accommodate every special needs family.

In the meantime, we’ll be heading to another theme park that understands the autistic mind… Legoland anyone?

IMG_3397

BUTTONS! TO PUSH EVEN!

Categories: Autism, parenting, Sensory issues | 27 Comments

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27 thoughts on “Until It Really Hurts

  1. This makes me so proud to know you and brought tears to my eyes.

  2. I’d like this again if I could:
    “What are you teaching him? I’ll tell you what I’m teaching him. I’m teaching him to stand up for those who do not share our privilege.”

  3. I’m new to your blog, but I love your voice! You hit this dead on. I’m looking forward to reading more.

  4. Pingback: Bob Iger, Let’s You and Me Have a Chat | Living on the Spectrum: The Connor Chronicles

  5. Kaytee

    The GAC? Was never intended to be a skip the lines pass, though it often worked that way as a PERK.it was intended to provide accommodations to those that required them, as per the ADA: an alternate entrance or air conditioned place to wait your turn.

    The new disability access program? Provides ACCOMMODATIONS as required by law to those with autism. But what you, and many other parents of autistic kids, want is PREFERRENTIAL treatment. No lines. 5x in a row with no lines on Space Mountain or the Cars ride. Those are PERKS, not accommodations, as per the ADA.

    You’re certainly entitled to boycott disney so that folks with autism can get PREFERRENTIAL treatment at Disneyland and Disneyworld. But it’s an interesting choice, not taking your kid to a theme park or buying him disney-brand toys because the company merely ACCOMMODATES him, rather than treats him the royalty you seem to think he (and others with autism) deserves. That because of autism, CERTAIN kids get to ride Space Mountain 5x in a row without waiting in line — but not ALLkids.

    • kaytee, seriously. why do you read my blog since all you ever do is say crappy things to me? Does that make you feel better as a human being? if you disagree with me so much–and your comments seem to prescribe that you do, you might be better off following a blog that you agree with.
      and no, I don’t want my son to be treated like royalty. In fact i even said in this actual piece that the system would work for us. which you would know if you had READ this and maybe taken 5 seconds to LISTEN to those words.. But please, feel free to think the worst of me if that is what you need in life to feel better about yourself.

    • rugbyrev

      I do not know this blogger. I do not know you. I do not have a special needs child, but I have a son the same age as my best friend’s son who is autistic. I have been to Disney World with my son numerous times and a few years ago we went with my friend’s family (before her son was diagnosed and so we did not have the GAC pass.) And what I think a lot of people don’t understand is a family with an autistic child experiences the park so much differently than those with only “typical” children. If my son and I happened to have a special pass, then yes, we would probably ride Space mountain 5 times in a row. We would be at the park open to close and ride everything we could. In fact, I’m embarrassed to admit that before kids, as a young adult, I did experience the park with a Disney employee who had a special “fast pass” that could be used on all rides. It was great! But THAT was receiving PREFERENTIAL treatment.

      The year we went with my friend’s family was a very different experience. Her son couldn’t handle the lines, the over stimulation, the uncertainty. We of course saw glimpses of the joy we all want our children to experience at Disney or we wouldn’t have done it, but it was hard for him. We were not able to stay all day at any of the parks and even his favorite rides, he couldn’t make himself get back in line a second time- usually because of some loud noise or large mechanical character. Their family has gone back since being diagnosed, but I can guarantee you they didn’t ride space mountain 5 times in a row. They actually only used the pass on the rides they really thought he’d enjoy, but could never experience with a 90 minute wait- even if the wait is outside the line, those 90 minutes could mean a meltdown that would effectively end their day at Disney. Perhaps that is preferential treatment, but if it means that a child who can’t enjoy a sleepover, who gets sick at the thought of going to school and who never gets invited to birthday parties gets to experience Disney with just a tiny glimpse of joy that the rest of us experience just by walking through the doors, then so be it. I will always advocate for that kind of preferential treatment.

    • Lisa

      Kaytee,
      As a mom of 2 typical kids who just had her first trip to Disney, I can see where you’re coming from, BUT…I saw how my 2 typical, non-spectrum kids behaved and reacted to the lines. I also saw families walking past the lines we waited in with seemingly “regular” kids. As Dawn points out, autistic kids have an often invisible disability. Maybe, just maybe, these kids who live in a world that is unkind and unyielding to them every single day deserve to be happy at the happiest place on earth. When you actually read the reasons WHY this system will break down for the majority of the kids who need to use it, you might realize that it’s not treating them like royalty, it’s not even so much a perk, it seems like an accommodation.
      That said, when a family with a special needs child rides a popular ride 5 times in a row, it creates longer waits for the families with typical children who, though not special needs kids, don’t necessarily have an easy time waiting either. Particularly when they see other children entering over and over without waiting it can be difficult as a parent to get kids to see that as “fair” and keep a meltdown from occurring on our end too. It’s a teachable moment for sure, but not an easy one. I don’t suppose there is a perfect one size fits all answer.
      I know for sure that the answer doesn’t lie in mean-spirited attacks on parents who have enough on their plates to start. I wonder who kicked you when you were down Kaytee, to make you want to be mean to a mom for whom life is inherently more complicated. We don’t grow in stature by diminishing those around us, we only diminish ourselves in the process.

  6. You spoke my thoughts. My child is high functioning as well but the new system would not work for him either. I’m glad we got in before the deadline. Logan was able to enjoy the park just like eveyone else even though we had to leave 5 hours before the park closed. We won’t be going back and we do have Legoland passes. They are very accomodating.

  7. I don’t know how I feel about all this. I see it everywhere, like this is really a hardship for special families. My kids are all over 18, and none of us have ever gotten to go to Disney anything because we can’t afford it, always having to go down to one income between the autism and the epilepsy, and trying to get two other children through school. This is a wonderful post, and of course I am disgusted that people are always seeing disabled families as “entitled” while never seeing the hardship we go through and work we put in, and I tell them so. On the other hand, I don’t like being thought of as less privileged because we can’t go to Disney. Believe it or not, your family can survive and your kids can grow up to get scholarships and degrees from awesome colleges without placing so much importance on an amusement park.

    • It does feel like we’re putting all the importance on some silly coroporate nonsense. But i know for some families, it’s the one place where they see their kid engage or react, and it holds a special place in their heart. It’s certainly not breaking my heart to not go, but i know some families are really really heartbroken about it, and sap that i am, i feel for them. But i totally get and appreciate what you’re saying.

      • Thank you, it was a good post and it wasn’t personal at all. It’s just how I feel about the whole situation after seeing so much about it. Believe me, I will keep up the fight for our kids’ recognition wherever and however I can too! I appreciate your response :)

  8. Laurel

    When we went last Tuesday and Wednesday…..Tuesday we used the old system. Only time we used it was on Haunted Mansion to get through the line. My 15 year old daughter did not enjoy that ride.All other lines for rides we went on were walk on, like Jungle Cruise, Small World, and Winnie The Pooh so there was no reason to use it. As an experiment, I had her wait in line with us for Peter Pan, and she did okay. Not great, but okay.

    The next day, under the new card, we rode Little Mermaid seven times, It’s Tough to Be A bug twice, Heimlich’s Chow Chow Train and toy Story Mania once.Only time we had to use the new card was for Toy Story. It wasn’t good. I had to run back and forth to the kiosk in the rain, hoping my completely non-verbal daughter would stay with relatives and not have a meltdown. She did very well, but I have to say it wasn’t good.

  9. decipheringmorgan

    I’m really wishing that there’s more places I could share this than just my pages and twitter.

  10. You know some people will never get it. It’s not about being treated like royalty (which really?) it’s about being able to enjoy the same experience that other families get to enjoy. Great post! We happened to go to Disneyland last year on a dead day so we walked onto most rides or waited under 10 minutes or less so we never had to use our pass. My son has Cerebral Palsy so standing for long periods of time is hard for him. I would hate to go and have to explain his disability repeatedly. That is so degrading for the kid.

  11. The people who ask why do your kids get to “cut” in line are the first to roll their eyes after only two minutes of your kid having meltdown.

  12. Kiely W

    I may have missed it, but do you have to have the child with you at the ride entrance? Or could one parent/ adult go get the passes while another parent/ adult stays with the children away from the entrance as to not upset them?
    Also, could you elaborate on the new process or direct me where to find it? I’m curious about who to talk to once in the parks as well the 75$ fee you talk about.
    Thank you.

    • I don’t have the website for the initial description at present (i failed to bookmark it) but the $75 i was referring to was the ticket price to get into the park

  13. Gia

    I am new to your sight. I really enjoyed your post. We would go to Disney World twice a year. One parent would go with my our autistic daughter and do one ride over and over while the other three of us would stand in line at different attractions like “normal” families. For anyone to say we are/were receiving privileged accommodations at Disney that is BS. We never abused the system. Our daughter does not have a vestibular system. She has to spin to feel normal. Does your normal kid do that. Does your normal kid have 5 different doctors to see every three months? does your kid scream because the lights are hurting her ears? Does your normal kid freak out because someone accidentally brushed up against her while walking by? Does your kid cry because they cut her sandwich at a restaurant? If your child wanders off will they be able to understand their name is being called? Yeah. Disney, we are so privileged. Yet it’s her favorite place to go and to see the princesses up close and get her sensory needs out on rides. For those that say I shouldn’t take her there it’s bad parenting, it would be bad parenting for us not too. However, We have decided we aren’t going back either, she would never be able to wait with the new rules.

  14. Audra

    This is the first time I’ve ever read your blog. I am in a similar situation in that the new system would probably work ok for my little guy but I also know families within the autism community for whom it would not work at all. That just makes me feel sad. We took our 3 year old son who has autism as well as our other children to wdw in August and used the old system. I would like to say that we went to go on the Dinosaur ride and the cast member at the entrance say the GAC in my hand and said we could go right on. I told her that the GAC was for the toddler and that he wasn’t riding. She proceeded to tell me that I should use it anyway because everyone does and I was stunned. I told her that my son really has autism and if he wasn’t riding we’d wait or get a fast pass and I think she thought I was nuts. I understand that there are those who have loved ones with disabilities who cannot wait very long for others to ride and so the rest of the family needs to be able to use the GAC – but those are in the minority. My point is that the cast members were encouraging misuse if the card – there was another cm that said virtually the same thing to me. They could have made some changes instead of just scrapping the whole thing. It breaks my heart that disabled kids are going to miss out because of abuse of the system. Disney could fix it in a much better way!

  15. Sandra

    We have visited WDW a dozen times with my son who has autism. He is somewhat verbal but prone to meltdowns and does not tolerate noise very well. Yet we have managed without a GAC, just using FP and planning our day at the park to be able to do what he wants with minimum wait times. I am sorry that many people feel Disney is screwing their kids and as an autism mom myself, I understand their concerns, but I am taking a wait and see attitude until I have a chance to experience the new system myself (we will be there in December). I don’t think we are seeing the final form of this system; people need to give constructive feedback to the powers that be if something isn’t working, And I don’t mean just yelling at the poor CM at an attraction and stomping off. Take it up with management. The old GAC had been corrupted into a jump-the-line pass which it was not intended to be, and that in turn bred both a sense of entitlement among those with disabilities, and rising resentment against people with disabilities by those without. Disney has passels of lawyers who doubtless have made absolutely sure they are complying with federal law concerning “reasonable accommodations.” So make your complaints known, especially if you think the law is being broken, but as I said, I’m going to wait and see how it works for us.

  16. Nancy

    Even though you are not calling on us to join you, I’m joining you. We will not be going to Disneyland. You outlined the reasons very well in this post.

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  18. Great post! Quite honestly, we are a family who has to save for a couple years to travel down to Florida on a vacation and visit Disneyworld. We have never been but we had been planning with another family to make our dream a reality in February 2015. I was getting excited about it. However, we are no longer planning it and it breaks my heart for both my children (one on the spectrum, and one not). My boy is considered “moderate-to-severe”. When we go to parks he often only has about three rides that he wants to go on. We do those rides over and over again. If he saw a ride and I told him, “That does look fun buddy but we’re gonna go meet some Disney characters and come back to it in an hour” he would literally melt onto the pavement and scream and bite himself and maybe bang his head. I would have to try to pick up his limp 60 lb body to bring him to a “quiet” spot and it would take about 30-45 minutes to calm him down again. If we tried to wait in a line that is forever and a day long, I don’t think he would melt into the pavement but he would whine, make loud noises, bite himself, and quite possibly start tapping everyone around us in his OCD fashion to calm himself- strangers love when he breaks their personal bubble . In short it would be far from the happiest place on earth so there’s no point in saving tons of money for us to make the trip.

  19. Gary

    You are free to go anywhere you like, that is the beauty of choice. I know people that work hard for Disney and I am sure there are behind the scenes things that you never dealt with, nor will you never know anything about. Again you have a choice. If you don’t like disney, then guess what don’t go back.

  20. Great post! While corporate Disney keeps telling us that it’s a case by case basis, CM are telling us this is the system and we need to make it work. Well, guess what ? it doesn’t work. With more work on my part, I could make it work for my son like you, But I continue to go back and make waves so that others can go too. Everyone deserves to go to the happiest place on earth, disability or not.

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