Why We Aren’t Entitled (And Why What Disney Does Next Matters More Than You Think)

Since the story broke last week that Disney is ending its Guest Assistance Card program and implementing a new Disabled Assistance System in its place, plenty of opinions have found there way onto this and other sites. People have plenty to say from both sides: families who will be greatly impacted by the proposed changes, and those who deem the varied needs of the special needs community as nothing more than a deeply rooted sense of entitlement.

To the latter, I say STOP: You know not what you speak of.

Entitled is not the word to use to describe special needs individuals and their families. We do not feel entitled when our children’s wheelchairs won’t fit through a doorway. We do not feel entitled when we are seated in the back corner of restaurants so as not to disturb the more “normal” patrons. We do not feel entitled when our loved ones are marginalized.

And if you think the uproar about Disney’s proposed new changes to their disability access program is just about long lines, pardon my French, but you’re an idiot.

Disney is a powerhouse.  Disney is a trailblazer. When Disney does something, other corporations and establishments sit up and take notice. And so, if Disney implements a program that may turn out to exclude a particular special needs demographic due to their very specific needs, where will that leave us with other, lesser known companies that aren’t as likely to be scrutinized by society’s microscope? What will they end up getting away with?

What Disney does next, sets the tone for others, so we are watching and listening very, very carefully.

If you really listen to the special needs population on this one, I guarantee you won’t find a single individual whining about having to pay to go to Disneyland. No one is demanding free entrance. We know being able to afford going to the park is a great thing in and of itself (though I use the term “afford” loosely since most people, special needs or otherwise, have to save for a long time to be able to bring a family of 4 these days).

What you’ll hear instead is a group of people truly worried about what the experience will be like for them once they get there.

And this is where that ginormous chasm between the disabled and non-disabled comes into play.

Where to sit, how many steps from one location to the next, whether medications are packed and administered on time, whether our loved one is physically strong enough to withstand the seemingly benign environment, how long before our child unravels at the seams, how long before perfect strangers look at us with judgement and hatred, how long before we give up and give in and go home, wondering if we’ll have the strength to try again some other time……

These are the things the able-bodied and sound of mind don’t worry about.

Before I became a parent to an amazing special needs son, I never even considered a fraction of the challenges facing special needs families every single day.

Now my life, so blessed and full and beautiful, is filled with a constant loop of worries and frustrations as I navigate a society that isn’t as user-friendly for my son and others like him as I’d like it to be.

I keep hearing things like “Disney doesn’t owe you people anything.”

First of all, “You people?” Seriously?

Secondly, this isn’t a question of owing anybody anything. We aren’t sitting at home tallying up what the world “owes” us into our pretend ledgers during our non-existent spare time; sorry to burst that ignorant bubble.

This may be news to you, but the day my son was diagnosed with a mile long list of lifelong health problems, I didn’t run up to the nearest rooftop and shout “YIPPEEEEE!!! NOW THE WORLD OWES US! WE ARE SO BLEEPING ENTITLED! I’M GONNA MILK THE CRAP OUT OF THE SYSTEM AND GET THIS KID FREE DIAPERS FOREVER! WE ARE SO LUCKY!!! TAKE THAT SOCIETY!”

Instead, I sat in my car and cried, knowing that his diagnoses meant he’d be overlooked and under-seved for the rest of his life, unless I spent my life making sure that didn’t happen.

As I told the woman who contacted me from Disney over the weekend: Special needs families are feeling unnerved and upset about these upcoming changes because they love coming to the parks so much. Because the joy on their special needs family member’s faces are worth the gajillion dollars it costs to go. Their criticisms and fears aren’t coming from a place of entitlement. They’re coming from a place of reality. A reality they live with each and every day as they struggle to make this world accessible. Not perfect, not free: just simply accessible.

They spend their days looking for those little dips in the curbs so they can safely guide wheelchairs or adaptive strollers onto the sidewalk. They wait patiently for the ONE special needs stall that’s being used by someone who doesn’t need it in the first place. They time their trips to the grocery stores so as not to disturb fellow shoppers. They grip their phones in their hands, waiting for the school to call with yet another emergency. They’re forced to rely on unmotivated doctors and trust perfect strangers and they go to bed each night exhausted, tossing and turning as they worry what the next day will bring.

All we really want are procedures and laws and protocols put in place to protect our loved ones and afford them a higher quality of life.

That shouldn’t be synonymous with luxury.

My friend Michele put it perfectly to me this morning:

“I would trade my assistance pass and parking placard in an instant for my kid to be able to tolerate a long line on a sunny day like a typical kid. To see my son waiting in a line for an hour, tolerating it, and running to the next ride all day long? One man’s dream is another man’s complaint. The meds, the sensory stuff, the confusion, the inability to communicate, the braces, the tube feedings, the seizures, the lack of endurance, the wheelchairs……and that is just OUR day at disneyland.”

So if you think this is just about waiting in long lines, you couldn’t be further from the truth. This is about the dignity of the special needs community. It’s about protecting those who remain gracious, even when you’re too busy to hold the door open to let them through (dude, why can’t you just hold the damn door open? It’s takes a few extra seconds and can seriously change someone’s day for the better). It’s about challenging society to rise up and meet the needs of it’s very diverse population.

And dare I say the biggest jerks making the most asinine comments about this issue are most likely the same jerks who contributed to the problem by cheating the system in the first place. Disney isn’t changing the program because they suddenly got tired of accommodating guests with disabilities. They’re changing the program because a bunch of asshats took advantage of a system they didn’t need. You want to talk about entitlement? There’s your entitlement.

Families like mine aren’t looking for a level playing field, because we’re smart enough to know there’s no such thing.

What we are looking for, what we’re willing to fight tooth and nail for, is a way onto the field to begin with.

Because it’s our field too.

 

It's not an even playing field, but it's his field too.

It’s not an even playing field, but it’s his field too.

 

Comments

comments

Comments

  1. i am going to disneyland in april next year with my husband and two children who both have epilepsy learning disabilitys sensory prosesing difficultys hypo mobile and anger management difficultys i am now dredding going my children find standing still for any lenght of time very painful on there joints they get stressed very easly and will lash out i think it is going to be very difficult for them and us as a family to cope we are going for three nights and four days .

  2. Rachelle Alexander says:

    Beautifully written. I had someone ask me what kind of pass got us into the fast line last time we were there. I explained it was for people with disabilities. They said they wish they had a pass like that. I said I wish we didn’t need one. That ended the conversation and they seemed to understand.

  3. Tracy Brooks says:

    Fantastic writing and so true. Entitlement has nothing to do with our concerns, thanks so much for writing this.

    • The GAC was never, ever intended as a skip to the front of every single line pass — it was an accommodation that allowed those with special needs to use an alternate entrance, wait in an a/c room instead of a hot line outside, etc. It was an ACCOMMODATION. The fact that the GAC often let folks skip right to the front of the line was a lovely, generous PERK. Perk. Not entitlement. Getting to skip the lines, to go on, say, 8 popular rides in the span of a 6 hours is decidedly NOT how “everybody else” experiences Disneyland.

      But here’s what baffles me: Kids with autism tend not to do well with crowds, loud noises and waiting in line. Theme parks are nothing BUT crowds, loud noises and incredibly long lines. Is this not hell on earth for a kid with autism? Why would a parent subject their special, autistic kid to a theme park?!?

      • Holly Peterson says:

        Because he likes it? I don’t think you really understand autism. :) Maybe you should try harder. And also, if you are so intent on people with disabilities getting to do everything the same way as everyone else, I think that sounds like a GREAT idea! I think you should advocate with everyone in society to make that happen! I’ll be waiting for my everyday magic to appear that will allow my son to experience things like “everybody else”! Or is it just Disney World where you want kids to have to be like everyone else? When it comes to friendships, tables in the lunchroom, sleepovers, sports, school, daily life, and everything else, do you make sure kids experience things like “everybody else” or are you just fine with autistic people being at the back of the line. You are right this was never about skipping lines. If you ever needed a GAC, you’d know that.

  4. I just don’t believe that anger and accusations and threats are going to change things at Disney. What I have seen of Disney is a corporation with a “heart”, we must appeal to the heart. I’ve signed a petition, but I also know, that Disney, as well as others doesn’t have to be as generous and gracious as they have been. I also know that the new system won’t work for my daughter who has dual dignoses of Down syndrome and autism, and many other things that come along with these two disorders. We can’t take her to D-lan anymore unless thing change. She cna’t hanlde more than a few hours – usually 6-7 hours is our maximum time there, but I also know she doesn’t need to go. She will be fine without it, and I choose to be grateful for the times we have had as a family prior to the cheats and sneaks took the fun away. I also know, that in the past we have encountered the pass change, but it has gone back – slowly and only for those who seemingly can prove they need it. I believe that patience and gratitude will get us back to where we were before people ruined it, because Disney employees really do have hearts. It may not be the most popular sentiment – and believe me – people hwo have bought season passes with the expectation of their pass along with the assistance pass togther should continue to get the plan they signed up for – but it is the only way I can look at this. Thanks for the good times, I hope there will be a change and we go back to what we had, but thanks for what we had. It was great, and it was helpful, it was appreciated.

    • Perhaps the best post on here. Disney bends over backward for people and they always have. They are trying to end abuse of the system. They are working on it. Give them the benefit of the doubt. We all want things our own way…but let’s face it. These are first world problems. A large percentage of kids in the world will NEVER go to Disney. Period. None of us are going to die if we can’t make it there…

      • Holly Peterson says:

        Well, I do think Disney will do what’s right, and I feel the same way. I feel grateful to Disney. The rest of society (based on comments and attitudes and sneaky people), well, let’s just say, I should probably avoid the comments on the internet for awhile (or forever). :(

  5. I can only stay at the parks for 2-3 hours due to my son’s condition. Disney was very therapeutic for him. Although we are passholders, it may not be cost effective to drive there for the equivalent of 1 ride. So I too may cancel if he can’t conform to changes. Sad a few ruined it for those that needed it.

  6. So grateful for you sharing this articulate advocacy. It’s frustrating–and sad–to personally see the erosion of Disney’s stance toward our community. And to see others abusing the “privilege” while we’re at the park is disappointing and a commentary on our society. Kinda reminds me of when our church suggested a cry room as a place for our 7- year old daughter; I knew she (and we) weren’t really accepted. “Seen and not heard” comes to mind. Anyway, so much for going to DLand or WDWORLD. :-(

  7. I would like to say something short and simple. I hope you realize that the man that made Disney a dream, Walt Disney, only dreamed of a place where children could play and use imagination. I feel he would be very offended that you would but disadvantages on disabled children and their families to prove a point to a few people that might take advantage of your system of rules. His tears will be shed all over Disneyland and Disneyworld.

  8. This is so sad. I have two disabled children. A son who is autistic and sensory issues. And a younger daughter who has a rare genetic, terminal illness there is no cure or treatment for. She has so many medical issues from this and fatigues easily. I too am disabled and can’t walk around like I use to needing a wheelchair.for extensive walking.

    Being disabled is not something we are happy about because now we can park closer to the entrance of a store, or use an elevator (if there is one) instead of the stairs. Or move up in lines because we can’t wait as long.

    And we most definitely struggle financially more so too as we have tons of medical expenses most don’t ever see in their life times. And all the insurance in the world won’t take it away.

    So saving up to go to a place like Disney World is a difficult thing for most people, and an REAL challenge for those who live in the world of disabilities. Having 2 disabled children and myself being disabled leaves us more in debt each month. Saving money to go to Disney World is just a dream to us. We have been blessed to still have our daughter with us for 18 years so far. She has wanted to go to Disney World since she was 7 years old, but we know it will never happen. . I am 58 years old and have never been.

    Now with the way things are I’m not sure I want to go. Perhaps we as disabled people, families, we need to stand up to people, organizations, groups and whomever who believe that a person with a disability should be treated like a normal person who can do, can live normal lives.

    Maybe if we don’t give them our business, and those who stand with us do the same they would have a change of heart when it hits their pockets if you know what I mean. It’s a shame it would need to come down to something like that. But cold hearted people won’t feel or understand the pain till you hit THEM where it hurts.

    And I am sure there are plenty of other people, places, and organizations out there that would jump at the chance to give us a break. Leaving all the others in the dust.

    Just a mom of seven children, my two youngest disabled as well now as myself throwing in my two cents… oh wait… let me see if I have two cents to spare.

  9. What a real and well written piece. After having taken my family to Disney in May, and having my 17 year old Asperger’s/bipolar/sensory son go into sensory overload within minutes, I can totally relate. Having other visitors looking at us as this 5’7″, 185 lb. man had a tantrum was something I will never forget. We did not have a pass to help with long lines, but I am not sure if it would have helped (unless it got us OUT of the park faster).

    I truly hope Disney will reconsider, even if it means increasing the screening process for handing out the passes.

    Thank you for writing this.

  10. =/ this made it in the news in Australia, too. We have theme parks down the coast, I don’t even know if they have anything like that at all..
    we only went to the seaworld one, and off season, my son wouldn’t be able to deal with the crowds. I’d say our family could do without it but I am in full agreement with you about how much it matters what Disney does now and how it is working, as their it will have repercussions on other companies, theme parks, entertainment providers worldwide..

  11. Cynthia Lovell says:

    My daughter’s family just went to DW, their experience started out horribly, they have a special needs child. They stood on lines for almost an hour (some a bit less, some a bit more). All their son wanted to do was stay in the room….that was more fun for him. After saving for so long to give them a great experience, they didn’t know what to do. The 3rd day they found out about the disabilities pass, it changed the whole visit. Their son is autistic, waiting in lines creates a melt down. If youhave ever experienced this you know what it is like. It not only ruins it for you, but those around you….not to mention what it does to the child. Plus, you deal with comments about your child rearing abilities and your lack of discipline (from folks that have no idea what your life is like). This special pass changed that for our grandson, our daughter’s family AND. the people around them.

  12. I feel for you having a SP child but really… All DL has to do BY LAW is provide ACCESS. Be grateful they’re doing ANYTHING. Seriously, they don’t HAVE to do ANYTHING AT ALL. It’s not discrimination. It’s just a bunch of people whining because they’re not getting their way.

    You’re not the only one with special needs children in the family… Even a VIRTUAL wait in line will let them go on another ride or do something else while they wait. Not coming back? Good. More Disney for the rest of us.

  13. Lynn Instone says:

    I too am disabled and am extremely disappointed to see disney doing away with the GAC. But it was NEVER intended to allow guests of any ability to ‘loop’ rides. No, not all autistic families do/did this. But it isn’t fair or reasonable! I’m sorry if that’s all your child wants to do but it still is not reasonable to expect disney to accommodate that by basically giving you (or ‘us’) a free unlimited FP that IMO you are abusing. The autistic families who have repeatedly looped rides have not helped our cause any! I can totally understand why those standing in the ‘regular’ queue seeing the same ‘family’ get on the ride multiple times ahead of them get frustrated and then decide to ‘cheat the system themselves’. I don’t agree with what they did, but understand it! And please don’t tell me that looping doesn’t happen because I KNOW it does! I’ve spent too much time in WDW myself to see it firsthand! :)

  14. To add to your wonderful post, I offer this story: In 2008, my oldest son was pre-diagnosis Autism and my wife was in a scooter because of MS. We went to Lego Discovery World in Schaumburg, IL. As I was making a path for my wife’s scooter and my son (who was a bit overstimulated) to just get to a calm place against a wall, some family felt that my pathway was for their benefit and plunged right through, blocking my wife’s scooter from getting through. I asked them, at first calmly and quietly, “Why did you do that? Can’t you see that my wife is disabled and I’m trying to help her through?” (Again, at this time, I didn’t know my son was also disabled. But it is an invisible disability, so wouldn’t be as obvious as my wife’s disability.) The wife/mother of the family started screaming at me, “I have two children here!” Like that somehow trumped my wife in the scooter. She was literally screaming at the top of her lungs and I realized that, short of physical violence which I am not apt to do even though I outsized her nearly 2 to 1, I was not going to get her to see reason. So, we left the entire facility. I was absolutely disgusted (but not shocked, sadly) at this woman’s behavior. Disabled people are mistreated by our entire society and I really do not understand why. That’s why I am a special needs lawyer to fight for people who get the short end of the stick every day.

  15. This is not going to work for my boys :(
    they both have so many medical and health needs that they only normally go on about 4/5 rides all day as it take us so long to deal with their medical needs, plus they have hundreds of szs daily so they can sleep a lot, when they are awake we usually run to a ride before the next sz!
    we go in October and I am not looking forward to it one bit! its taken us 18 months to save up to go now I don’t want to.

  16. Simple: No GAC, no AP. Not even a question. With the limits I now deal with, (pretty mild compared to others) it simply is not even close to be worth it.

    What the bean counters don’t take into consideration is what it takes for someone with limits to get there in the first place, and to be there, and often, how long they can be there. So while this new system may seem “fair”- and I can make that argument, too- “fair” isn’t enough to make it worthwhile to deal with what I have to deal with (and again, I am a very mild case) to be there in the first place.

Trackbacks

  1. [...] Special Needs Orange County writes, “Where to sit, how many steps from one location to the next, whether medications are packed and administered on time, whether our loved one is physically strong enough to withstand the seemingly benign environment, how long before our child unravels at the seams, how long before perfect strangers look at us with judgement and hatred, how long before we give up and give in and go home, wondering if we’ll have the strength to try again some other time……” [...]

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