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What is privilege?

BUT YOU GET TO DO WHAT WE CAN’T WHEN WE ARE IN LINE! LL ARE LONG SO HOW DO YOU EVEN DO THAT? HOW DO YOU WAIT IN LINE AT A STORE?


I’d give anything to have my old body back. To be able to work again. To be able to run, exercise, take long walks up and down hills or up a mountainto be able to stand in the sun all day in one line for one ride.


I do not go in LL that are long. Period. So I cannot use it 100%. I can change my selection but that means another long walk instead a long walk out…so sometimes, I just leave. Essentially means I go on no rides.


And sure a day at the park in and of itself is enjoyable but it hurts when I can’t do the things I grew up doing.


I simply can’t.


Let’s go over why I can’t…


I have a neurodegenerative incurable disease - Primary Progressive Multiple Sclerosis (the kind where you simply continue to get worse without relapses. Gives “it’s all downhill from here” new meaning).


I also have a previously ruptured (almost killed me and blinded me) cerebral aneurysm coiled at the base of my brain. I cannot go on roller coasters because of it. So I cannot go on my favorite attractions any more. Doctor’s orders, I’d rather you not die because that coil moved…


I take multiple drugs daily just to be able to feel my legs in an ALMOST normal fashion and to have less pain than without the meds. I can’t temperature regulate. My legs vibrate with a strong buzz that is so bad without meds they become jumpy/bouncy and difficult to control. With the meds I still walk like a duck.


I take 4 meds to manage my blood pressure because my ANEURYSM closed off a major artery and my body still hasn’t figured out how to manage that closed door with the blood flow I have. The aneurysm damaged my eyes, destroyed memories, and injured my ability to balance myself.


Standing is supremely painful. Yes I do it at the market or other stores but that doesn’t belie the fact I’m in SIGNIFICANT pain and when I get home I CRASH FOR HOURS to recover and hubby puts away anything I came home with.


You don’t want to be me because it extremely sucks to be me and I hate it every day.


Saying we get to do what you don’t because you are in line and we are not IGNORES the fact that sometimes we don’t and YOU GET TO DO EVERYTHING ELSE WITH EASE.


It ignores the fact you CAN wait in those lines and I CAN’T.


It ignores the fact you CAN do a full day and I CAN’T.


The fact you go home and you’re tired but you can do everything else you need to when you get home…and I can’t. I crash for hours sometimes days. I’m in so much pain I have to supplement my normal daily horse pills with others to try and temper the pain.


It ignores the fact you can walk around the park all day and still walk to your car, drive home, and be able to walk into your home without nearly collapsing into walls in severe pain.


EVERYTHING I do incurs a penalty. Everything I do creates PAIN for me. So it doesn’t matter where I am, I am NO able bodied person and I NEVER will be.


I’ve lost the ability to stand in a line in the sun for hours. Ever accidentally electrocute yourself? Imagine that funny buzz all the time. Now imagine that buzz increasing as you stand in the sun, unable to feel your face anymore, unable to feel your legs, loosing the ability to concentrate, speak straight, and stand balanced.


I’d give anything to be able to stand in a line in the sun again. I was a sun baby. Born in July enjoying summer every year. I ran in school, played basketball, and volleyball. I hiked up the mountains in Angeles Crest. I walked down bunker hill to have lunch with my mom then I walked up all those stairs to go back to work, like nothing happened. I worked out every day. I did yoga every week.


I can’t walk up stairs normally anymore. I can’t even do a little run to the elevator because my legs don’t really listen to me very well any more. The lesion on my spine did that and robbed me of being able to temperature regulate. The lesions in my brain numbed my face and left side of my body. The aneurysm robbed me of the ability to turn around like a normal human being and not fall.


It is no privilege to be disabled in any fashion. The DAS is NOT a privilege. It is an accommodation required under the law to help those of us who cannot do what able bodied people can without a second thought.


So when you say we can do what you would do if you were outside of that line. Think of this.


Being able bodied is a gift and a privilege. A gift and a privilege we NO LONGER HAVE.

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Guest
May 24

The new DAS will no longer accomidate people like us. They are now totally excluding people with acquired disabilities like MS (and ME which I have) and only including people (generally children) with developmental disbilities. Under the new rules I don't think I can go anymore. My new Magic Key is useless. There is a petition going around on change dot org.

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Guest
May 18

Rosie, I’ve been following your fb Disney page for quite a while now and I knew you had something going on with you but never really read deep enough into it until now. I’m so sorry that your body has turned on you like this and I do pray somehow someway there can be a relief and cure for all of that.. you have explained yourself fully, and I hope that you never have to do it again for those who like to be ignorant like to feel entitled. I simply will not complain about my feet killing me anymore after two days at the park with my grandkids in a row. Which for me at the age of 69…

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Guest
May 18

I found your page through my DAS Facebook page. Thank you for speaking so much truth! I'm disgusted at Disney to imply we were once mistakenly given a "privilege" 😡 I would love one of them to try walking in our shoes for a day, then speak about our "privilege"!! My disabilities are actually made worse by sitting in a wheelchair, so that isn't an option. Disney has been sued before by those representing the autism community, which is why Disney is now ONLY going to serve those individuals. The easier solution is to utilize the same system Universal utilizes, unfortunately they won't do that because their real reason for this new system is to make $$$$ off of Genie…

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Guest
May 18

Rosie, I'm a long time "lurker" but I think first time poster. I was aware you have medical issues and need a DAS (who am I to question?) but no clue as to the severity (not that it makes a difference). I cannot imagine how you get through every day and I'm in absolute awe. I respect you for writing so freely. Please know that if I'm ever in a park at the same time as you, I'll gladly share my water and then go stand in line for you.

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Guest
May 18

You are my hero for trying to live a life and not just pulling the covers over you and giving up!!! You keep going and others like you!! I pray Disney can get the DAS right that is fair for people like you!! I am so thankful I am an old able body that can stand in lines and will stand a few moments longer so people like you can enjoy Disney too!!🙏🏻❤️

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