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.