Posted in News and Opinions, Out and About in Orlando, Uncategorized

Oh Irma…..

Unless you have been living under a rock, Florida has been placed into a state of emergency due to a category 5 hurricane making a B-line through the center of the state. 

After the events of Hurricane Harvey that hit Texas with a vengence, the typical laid back partying type have turned into the preparers of impending doom, stocking up food and water and just about everything else you could imagine. Stores are empty and there have been bum rushes of people grabbing cases of water like crazy parents buying the latest Christmas toy. 

I spent the last 3 days trying to track down water with the only success being out at Walgreens across from work, my two hands only managing to snag one since I have no access to a vehicle (luckily, a good friend I was meeting up with managed to get me a ride home.)

All this disaster stuff has made me numb. This isn’t my first go-around with a hurricane. My first major one from memory was Hurricane Sandy in 2012, which became the catalyst for my move here to Orlando when the schools I worked at got shut down for a few weeks. I have also dealt with Hurricane Matthew, which became a dud of a storm, which results in mad trust issues. 

 My family back up north has been worried about me, so much so to the point where they’re calling me every other hour. Part of me doesn’t know if I should give into the hype and panic or just wait it out and treat it like a normal rain storm. 

 I will tell you now, my anxiety is through the roof trying to prepare for this. With RJ’s help, I have managed to obtain enough supplies to last me for a few days and then some. I have had a few anxiety attacks the last few days and he has been there with me the whole time. 

But when it comes to evacuating, forget it. Without a car and up to date medical records for the cats that are required by shelters, that leaves us staring at the belly of the beast. My friend offered to come get us, but I want to stay in my own home, which is as far inland as you can get here in Florida. They don’t call my neighborhood Florida Center for nothing. 

As I sit here awaiting the storm, I am reminded that life is something one must never take for granted. The storm is just one thing life throws at you to make sure you’re paying attention. I’m ready for the best as well as the worst. Whatever happens happens, but we won’t know for sure until Monday afternoon when she finally blows over. 

To my family, friends, and followers, please know that whatever comes out of this, I wanted to express my gratitude for all of you. I will do my best to keep you posted on what’s going on…the best way I’ll be doing this will be on the Facebook page. For now, I’m ready to ride this thing out.

Okay Irma, show me whatcha got…just please play nice. 

Posted in Lights, Camera, Universal!, Mandy Eats, Out and About in Orlando, Uncategorized

Mandy Eats- Off the Universal Dining Plan

Universal Orlando Resort consists of three theme parks, a shopping district, and five hotels chock full of foodie possibilities. I’m always on the hunt for the craziest of what theme park food has to offer. But it comes at a price, as any venture to a theme park would. In a world of $11 hot dogs and $4 sodas, where can you turn to if you want to experience the best of the best when you’re on a tight budget? Why Universal, of course. 

That’s where the Universal Dining Plan comes to play.

For a flat fee, you are issued one meal of your choice from any quick service restaurants and one snack from any snack cart, candy shop, or ice cream parlor. In addition, you also get beverage options, and this is where the different price plans come to play. 

The $28.99 plan includes one meal, one snack, and a Coca-Cola Freestyle Souvenir Mug with Unlimited Refills for the day.  You can also bring back the cup on your next visit and pay a fee of about $8 to get unlimited refills again.

The $22.99 plan, which includes the meal and snack, replaces the cup with two beverage credits. That means you get a drink with your meal and a spare drink you can use for your snack. Today, I took this plan out for a spin and took it upon myself to find the most interesting things you can get with a dining plan.

The Meal

Usually when I get the dining plan, I find myself in the Three Broomsticks or Mel’s and I wanted to try something new. Both places are awesome, and I plan on doing reviews of them later on, but this place always struck me as one I should pass. Little did I know I was missing out on awesomeness. I will be doing a full on review of this place in my next post because the detail and theming is something I could write forever about. But if you’re big into classic sci-fi and horror movies, and love to dine amongst real life props from said movies, Monster’s Cafe is your geeky haven for curing the hangries.

It’s alive…IT’S ALIVE!

The Speciality Smokehouse Burger (valued at about $19 after taxes) is a burger topped with pepper jack cheese, pulled pork, cole slaw and pickles, served with fries and a small chocolate or vanilla milkshake (which I didn’t get since I was afraid it would kill off a snack or drink credit, which I found out later it doesn’t.) It also includes your first beverage credit, which I got a Coke Zero. 

The burger was sloppy goodness that brings you back to those days at a family BBQ, the monster mash up of a pulled pork snadwhich and a burger made way for a sweet and smokey meal. 

Cross dissection of tasty experiemtnal burger.

My only complaint was that the bun disintegrated underneath, which involved the aide of crispy crinkle fries and a fork to get the job done. Oh the humanity! All in all, this was a tasty meal worth getting again on a future visit.

The (Second) Beverage

My “basic white girl” senses are tingling.

I found myself at Islands of Adventure, wandering around Hogsmeade while looking for my next beverage to try. Some of the drinks that we would classify as beverages actually count as snack credits on the Dining Plan, like the Fishy Green Ale and the Butterbeer, as well as the bottled versions of the pumpkin juice and gillywater. But, you can easily get some of the bottled  drinks with the proper drink credit from the tap at Hog’s Head which is attached to The Leaky Cauldrun.

The Pumpkin Juice (valued at about $5 after taxes) is a sweet non-alcoholic beverage fit for any autumn loving, pumpkin spice consuming wizard or muggle alike. It’s consistency is that of apple cider with a pumpkin spice kick to it, and the best part is that it’s offered year round. Both sides of the Wizarding World of Harry Potter offer this drink, so no matter if you find yourself at Hogsmeade or Diagon Alley, rest assured you can satisfy your pumpkin craving.

The Snack

Decisions decisions…

After taking a ride on the Hogwarts Express back to Diagon Alley, I had a hankering for some ice cream. I originally wanted to go to some of the Ben & Jerry’s places on property so I could go and grab some Jimmy Fallon ice cream “The Tonight Dough”. But to my dismay, I found out most of those places were closed since it was almost the end of the day. I decided to venture back to Diagon Alley to check out Florean Fortescue’s. I heard they had some pretty fun flavors there that would be perfect for a fun foodie experience. Florean’s is usually open late while some of the shops and restaurants within Universal close an hour before the park does. If you have a last minute craving, it never hurts to check Diagon Alley.

Sweet Gringrots, this ice cream is tasty.

Upon entering Florean’s, you are bombarded with a variety of ice cream flavors and consistencies, from soft serve to hard packed, and even potted cream. Flavors range from your basic vanilla and chocolate to some crazy flavors like Apple Pie, Earl Grey and Lavender, and the one I chose, Chocolate Chili. Yep, you read that right. And it tasted exactly how you think it did, very chocolatey and pretty spicy. The combination of the two reminded me of Mexican hot chocolate. 

For the Dining Plan, a waffle cone and ice cream or a cup of ice cream (valued at about $7.50 after taxes) is considered a snack credit, any toppings are considered extra. I wound up getting my sprinkles for free because they ran out of my flavor ice cream and had to pull some from the back, which was too frozen for them to scoop out right away. Needless to say, it was well worth the wait, and the sprinkles were an awesome touch to an already magical day.  (Thanks Kristen.)

So…is it worth it?

Let’s look at the breakdown from today by the numbers, shall we?

Meal and Beverage- $19

Second Beverage- $5

Snack- $7.50


TOTAL- $31.50


Savings of $7.01

Keep in mind these prices are approximate, as I didn’t get the final prices for some of my items and was only going by the prices on the menu without the taxes. But when you look at the numbers that I used,  it’s pretty obvious that you can save quite a bit of money by using the Dining Plan, so much so that you could almost count it as snagging some free ice cream. The savings do add up the more expensive your meal is, for instance, a Chicken & Ribs platter over at The Three Broomsticks can go for almost as much as the Dining Plan itself. Also keep in mind that some items within the menus at the restaurants don’t count as part of Dining Plan for some reason or another, usually ice cream sundaes or large family size meals fall into this category. Easiest way you could know for sure is the check the menus for the universal Dining Plan logo or ask a team member for assistance. 

 All in all, this plan is definitely worth it if you know you’re going to eat something more than just a hot dog and chips. The plan won’t do so well if you stick to the lesser expensive items, because in some cases you actually make out better buying a la carte.  the Dining Plan gives you the freedom to try what you want and eat what you want without worrying about shedding out more money than you have to. This little card is a foodie’s right of passage.

You could get the Universal Dining Plans in child and adult forms at any vacation planning window, guest services, quick service restaurant, and several kiosks located through property. I got mine at the dining kiosk near the entrance of Universal Studios next to On-Location (the photo shop.) 

There’s a whole new world to explore. Hope you brought your appetite.

Posted in Uncategorized

Stressed and (Surprisingly) Surviving

For reasons (sort of) unknown, I have had this sense of dread hanging over me, almost as though I am destined to fail. I have that fear that the events that played last summer will happen to me again. Often I feel like what I am doing is never enough. It’s as if everything I learned at the new job just gets lost once something happens in real life beyond the classes I took. I’m asking questions every five minutes, so much so, I feel my team lead is getting sick of my derpy brain, even though I have only gone live about twice in a booth since I started.

As busy as things have gotten with the new park opening and my upcoming projects (the presentation at the Family Cafe and my first shot of giving up my autumn season to be a scareactor for Halloween Horror Nights) I have felt that my writing has taken a backdoor with all that is happening because my brain is constantly on how well or not well I do at work. Rest assured to my blogging family, I haven’t died yet.

Which is surprising to say the least.

A year ago, with this kind of stress added to my life, I would be in a corner of my booth freaking out. But now I feel a sense of acomplishment and determination to make the most of everything I do, to try new things, and not let the crazy of a new park get to me. Seeing the lines and the occausional upset guest doesn’t phase me anymore.

Is it because I survived the worst year of my life and learned to handle whatever comes my way? Is it the years of experience that made me somewhat of a pro as to how to tackle difficult situations? Is it the fact I work with some surprisingly caring and compassionate people? Is it because I am no longer focused on the ex and his health issues, the long bus ride home, or the office melodrama that took every bit of life out of me?

Whatever it is, I feel empowered to take on whatever challenges life hands me. My writing and touristy blogs will be back soon, as well as some other fun ideas I am conjouring up in the back of my brain (food reviews possibly?) But for now, work beckons.

Now if only I can get this pesky cloud of dread over me to blow over. 

Posted in Uncategorized

A Note To My New Fellow Co-Workers

Hey guys,

You may not know me, for I didn’t have the same track of training as you had. You know how crazy opening a theme park can be, paperwork gets lost and trainings get penciled in. But eh.

My name is Mandy, I have prided myself on my love and knowledge of theme parks, so much so, that I decided to give up everything I had, including a teaching assistant job, to move down here from Philadelphia. I worked at Disney for three and a half years, selling theme park tickets in some form or another in both a retail enviroment and Epcot. I have seen parks get full to capacity, dealt with guests threatening to kill me, made magic and miracles happen for Make A Wish kids, and tried to make dismal moments in the vacation planning process a lot less stressful. Helping people is been the cornerstone of everything I try to accomplish everyday, despite my challenges.

I might look a litle slow, I might not make the best eye contact, and I might even mistake you as someone else. You might think less of me since right now I’m not an equal to you in the booth as of yet. 

I have a condition called Autosomal Recessive Ocular Albinism, basically it’s a clusterfudge of anything and everything that ruins both my ability to see and my ability to differentiate faces and small details. I’m also light sensitive so sunlight and fluorescents give me migraines. My eyes dance around due to nystagmus, it’s my brain’s way of trying to keep focus in a world that basically looks like a crappy cell phone camera photo from 2005, pixelated and blurry. 

Despite all this, I am intelligent and a fast learner. Once I get a visual layout of everything, I can pick up new things in a flash (a legally blind visual learner, how ironic.) I have bifocals and a digital magnifier that helps with the small details a vacation planner needs to, well, vacation plan. 

I am also the kind of person who needs things to do in order to be happy. When I’m standing in a spot with no interaction or pet project to do, I get grouchy. So you might see me doodle or fidget around, even clean or make idol chat with guests. If you see me like that, I could really use something to do, even if it’s grabbing you a water or helping you restock something. Greeter jobs are not my cup of tea. But I can manage as long as I am treated the same as anyone else and not down talked to like an infant. I may not be your equal now, but in due time, I will be. I didn’t do all this pass sales training for nothing, nor has this been my first rodeo. 

I may not be pretty or perfect enough to mingle with the in-crowd, nor do I speak many languages to converse wth everyone, but I have full respect for each person, guest and team member alike. We all have our backstories and we all have our differences, and that’s what makes us part of this amazing opening team. All I ask is the same respect in return. You don’t have to be my friend, nor do you have to agree with me on anything related or unrelated to this job. But all I ask is to be treated like anyone else, to be valued like anyone else, and to not let my disability tell you otherwise. Unless you are management, I kindly ask for you to talk to me as an EQUAL. If you have an issue, let’s discuss this like adults. If you see me doing something wrong, a simple offer of “Let me help.” would do the trick instead of taking over any situation. You may have experience, so do I. Let’s talk about it and share our experiences as a team. 

I’m also not asking for pity by any means. NEVER assume my lack of abilities. I may not get everything right away, but that’s because this route to get here with you all didn’t take the course it should have. Be patient with me is all I ask. But also give me a chance to prove that worth. You’ll be surprised of what I am capable of.

I’m glad to take this journey with you, even though I’m in an odd situation right now. I hope in writing this letter, it clears up some misconceptions of who I am and what I am about, and in return I can give the best guest experience possible as a vacation planner…Just like you.

Let’s get through this opening weekend together and beyond, hand in hand.

Your fellow team member,


Posted in Uncategorized

Confessions of a Disabled Dude’s Girlfriend- Half Staffed and Full of It

Ever since I could remember, I was always treated like the enemy in my relationship with Bill, mostly in part to my perspective of “disability means jack shit” and that nothing should stop you from living a good life, not even staff people.

But sometimes, things got in the way. Or in some cases, they didn’t intervene enough. 

I remember my early years with him, having the respect I deserved when taking him places. I was always careful, making sure this precious cargo of a man would make it home in one piece. 

A few of my friends caught on to our relationship and invited him to go dancing, to a strip club, to a dorm party, to a local bar. He was an adult, and as long as I was with him, I thought we would have it made.

Only we didn’t. 

One night, I got into a fight with a guy in our group who tried to hurt Bill, and I was since labeled a bad guy, even though it wasn’t my doing. That small incident led to me being treated like a damn drug addicted step mom, going to relationship therapy and having curfews. He was placed in day programs he didn’t like because he was treated like a baby, placed at a table to color with people who couldn’t function beyond a toddler status. As much as I was his voice, I was silenced, threatened with fake restraining orders, told constantly how bad I was for one bad night in college. As for him, he was a pushover even though he always preached self advocacy. Go figure.

I left when I had the chance. This third-party nonsense got to me and it made me sick to my stomach.

Years went by and I learned to adult somewhat. I got my own place and paid my own bills, I proved myself worthy to take another chance at patching things up with him. I was ready to be taken seriously.

I remember coming back to see him seven years later, his staff a fresh new team of helpers with open minds and open hearts. My first visit was well taken care of. Our itinerary planned for the whole week, no issues whatsoever.

Except that sometime there were shortages. And sometimes neighbors would take a top priority over him, such as the case with the second trip.

One neighbor a particular had various issues that to me would require more intervention than what the place he lives at would offer. His neighbor was violent, intrusive, and very needy. This neighbor even walked in on me and Bill getting intimate. The neighbor walked in, didn’t say anything, just plopped on the recliner and turned on Netflix while me and Bill in various stages of undress looked at each other in awe. 

The staff didn’t seem to do anything, as this became the norm of the visit, the neighbor yelling and banging on Bill’s wall at 3am. Mostly because there was no night staff in the building and he appeared to be suffering from hallucinations. 

The daytime became a juggling act of six house mates with less than two or three people running the show on a good day, usually Bill and I would be left in the dust, even though I offered the staff the option of meeting me downtown with Bill while I took the bus in order to help ease things up a bit.

But nope. Last time I was there, we were always left alone. Although loneliness was a good thing, it was also a bad thing. We never got any community time that week other than Bill going to work and the conference I spoke at. While his neighbors got to go to Subway and coffee shops, we stayed home. Mostly because Bill and his equipment didn’t fit in some of the cars. Those four walls are like our prison. We were happy together, but I was dying a bit inside. Nobody should live a life this sheltered

I remember one day on my last trip, Bill was being showered and the staff was called in to have a meeting about the next door neighbor going off again. Bill sat there for 20 minutes unattended, as I was told not to bathe him in fear I would hurt myself or him, despite my years as a paraprofessional. 

I finally had enough and finished with his bath,  even though I was scared shitless I was going to break him. But I did it anyway. I have to learn somehow.

I remember the day I left for the last time, the staff was nowhere to be found, dinner wasn’t cooked, and I was left rummaging for last-minute Uber fare for my grandmother in Pennsylvania so I could go home since my ride, one of the staff who volunteered,called in sick and had to bail out on me.

Staff shortages are apparently the norm in many places, due to budget cuts and high turnover rates. It just so happened that week was plagued with one, mostly caused by sick leave. So unfortunate, good thing Bill and his neighbors didn’t need any major supervision or medical intervention. God, I can’t imagine if they did and this happened. 

 A few months passed since the last trip and I came to learn that Bill was being set up on play dates from the staff,  involving a girl who has direct relations with the person who runs the agency. Bill told me constantly that although they were friends, he just didn’t know how to say no to her. She would constantly talk mean things about me and would tell him that he was not allowed to have a relationship with me. My guess was that Bill was afraid to stand up for himself because of the power this girl had on him. This became the last straw for me. This weird hierarchy turned  fatal in our relationship.

It seemed to me that the early days of our relationship were repeating themselves.

Because of all this, we became no more.

I feel as though staff people shouldn’t have a bearing on what a person wants to do with their lives. As long as that person is able to give consent, they should have a right to pursue whatever dreams they have and not be forced into a bubble. I saw Bill as an adult, some people didn’t see it that way.

Now I understand shortages, issues with neighbors, and whatever life throws their way. But I feel like there were a lot of things wrong with the way Bill and I were treated, some things intentional, others a result of unfortunate circumstance.  Bill sometimes was treated like an inconvenience, I was treated like an enemy, with the exception of the last two visits, which we sometimes found ourselves as an oversight to an already overwhelmed staff.

I feel direct support needs a lot of work to support everybody who needs it, there shouldn’t be a hierarchy of needs, there needs to be an ample amount of people and an ample amount of hours for each one. Bill’s neighbor took three people to take care of him the day of the shower incident,. Bill and I were left with nothing during a pretty awkward time. Stuff happens, but it makes me wonder how often stuff like this went down. 

A friend brought up a good point about some of the issues I had on the last trip. He thinks it’s because the staff saw me as an easy way out for the week. An able-bodied wife figure who can cater to his every whim. I was on vacation, I shouldn’t have been treated like unpaid staff. But I did so anyway because I love the guy and I knew the trouble his neighbor would cause if heaven forbid he didn’t get the staffing he needed. Plus, if this was going to lead into us moving in together, I had to learn the ropes, although I would of perfered a training session over winging it any day.

Honestly the whole situation sucked. I was doing everything in my power to find a way to get him out of there because I think he deserves more than what life gives him. But he was so originally brainwashed from our ealry days and so used to the life that he lived, that change didn’t come easy with him. I would move mountains for the guy if given the chance. Giving him the perfect life was my only motivation to be focused on making a change. I wanted to be his hero because at times, he chose not to advocate like he was so well known for years ago. Seeing him like this scares me still, even though things went downhill with us the way they did. 

I just wish the issues we had with staff were fixable. But due to several budget constraints and issues with other people in his building, my idea of a perfect life with him was shattered. 

I just wish people with disabilities were given the same opportunity as everyone else with the right amount of help needed to reach their goals. After 12 years, progress has been made, but quite frankly I feel as though it’s not enough.

I can only hope things get better for all involved. From Bill, his troubled neighbor, the overwhelmed staff, and everyone in between. Everyone should be able to live life on their terms and have the help they need to get there, and that help should be a lot easier to access, both from a client and staff point of view.

Posted in Uncategorized

Let Me Introduce Myshelf- Part 5, One Little Spark

Way up high on my “Tower of Power” holds some of my Disney park exclusives, mostly my Epcot memorabilia, with a few Magic Kingdom goodies in between.

As many of you already know, I was raised to be a Disneyholic, making the almost yearly trek with my family and falling in love with the discovery and imagination that was the very core of Epcot. 

In the picture above, you’ll see a Tapestry of Nations Vinylmation set just chilling with a giant Chip and Dale bobblehead and an Epcot promotional video from the 90’s. That little bug dude hanging out on the VHS is a mascot from the original Extraterrorestrial Alien Encounter, a now defunct ride at Magic Kingdom.

Another nifty find was added into the collection by RJ, a puzzle from the late seventies early eighties that could be mailed out just like a real postcard. Surrounding the puzzle are some McDonald’s Epcot 94 Adventure toys. I also have the display they came in, but it needs some repair. The giant eggplant guy is my latest find from the flea market, an early 80s Kitchen Kabaret plush.  You will also see a promotional video for the Millennium celebration, which holds a lot of sentimental value to me since I was a vital part of that event as a kid. The Millennium celebration also held a global youth summit called the Millennium Dreamers, which I was able to attend. The summit paved way for another yearly event called The Dreamers Academy, which they now host at Epcot every year. Pretty cool to be a part of something that inspired others. All the more reason why Epcot is my home even though I don’t work there anymore.

Disney will always be a thing I will love, the memories tied into it are deep, from my visits in childhood, the youth summit, and even working there, all of it holds sentimental value. Whenever I find anything vintage from the parks, it makes me feel like I’m holding onto a piece of history.

“Let Me Introduce Myshelf” is  an ongoing series about the meaning behind my collectibles. You can read it from the beginning here

Posted in Uncategorized

Watch Your “People First” Language 

Image via Google Search

“Blind, Visually Impaired, Person with a Visual Impairment…..” So many choices in how one identifies themselves in the realm of disabilty. Same can go for those in wheelchairs. “Cripple” is the new “in” term for those who self identify with, but that term can get ugly when muttered in professional enviroments. I think “person with mobility issues” or “wheelchair user” buzz around my work more so than Harry Potter or Disney characters. it’s the fear of being rude, which although has good intentions, can seriously annoy one who goes through it every day. Honestly I think this debate is worse off than saying “Merry Christmas” over “Happy Holidays.” No matter how you word it, someone is bound to be offended.

To identify one based on disability alone is often looked down upon by the outside world. But for many, idenity is life. For example, people with Autism, at least many I know, cringe when they are labeled person first. Usually, “Autistic” is the way to go.

But where do I fit in with all this?

Oddly enough, I am one of the few with visual impairments that refers to themselves as “Legally Blind.” Very rarely do I pull out the person first card for a variety of reasons. 

  • It’s too much of a mouthful! – “Person with a Visual Impairment” to me makes a sentence in itself, literally and phonetically. It’s not a term that rolls off the tongue well. “Visual Impairment” as it’s “little sister term” to me seems demeaning, in a fluffy sort of way. That’s like calling a disabled person “handicapable” or a person with Down Syndrome “Up Syndrome.” (Although to each their own.) I call my disability like it is. I don’t sugar coat it. It’s sucky and it’s a pain, but it’s a part of me and who I am. 
  • It spikes conversation and in a ways, educates at the same time.– Legal Blindness is a term that covers the basics of a visually impaired person in terms of how great of an impact their disabilty is to them. In the eyes of the law, I am unable to drive and can collect benefits as needed, despite the fact I can “technically” see, although it’s still a debilitating condition. In coining the term “Legally Blind” it covers the basics and gives the outsiders a general idea of how impactful a disability can be.
  • Impaired is so passe – To call someone “impaired” to me sends the wrong kind of vibe, as it something is wrong with me…well, OK, there is, but that’s besides the point. To me, it seems like a term that limits a person more so than anything else. Impaired carries a negative stigma along with it and tends to scare people away. Blindness is blindness, might as well call it what it is. Nothing more, nothing less.

Now when it comes to other disabilities is when you get into some untouchable territory for me. The battle against the “R” word has spawned a million different ways to call a person with mental disabilities. “Developmentally disabled” works well in my circle over “Intellectual disabled” any day of the week. Although a small few still refer to themselves as “retarded” similar to those who still refer to themselves as “cripple” like some renegade cult of acceptance. To me, that sort of language falls into some “N” word like vibes, only people who identify as such can use it, but not others. I always found it weird when I worked Special Olympics one year in high school and some of the athletes bro fisted each other and called each other retard. Hey, more power to you if that’s how you roll (I guess?)

To me, when it comes to mental illness, it seems like the umbrella of terms gets smaller. Typically if I have to disclose myself, I am a “Person with Anxiety” or “Diagnosed with PTSD.” I have heard the term “Spoonie” mentioned in these circles but often, it lands in the “chronic illness” category. Since Spoonie is often used as a pet term for someone on medication, which I am no longer on because of insurance issues, I don’t see myself as that. Honestly in the real world, I keep that part of my life hidden if need be. But to my friends, I call it like it is. “I’m a hot mess” or to be blunt “I’m fucked up in the head.” 

My conditions are a part of me, and the only ones who should label me is myself. I will take my “hot mess” brain and my “legally blind” eyes over long lengthy demeaning jibber jabber anyday. 

Too often, people get freaked out on how one chooses to indentiy themselves, sometimes to the point of bickering or the worst case scenario, mollycoddling. A person shouldn’t feel sorry for what they label themselves. If you like person first and that’s how you see yourself, I’m totally fine with it, but to correct me for my terminology is crossing boundaries. Everyone has a right to call each other what they are, even if some don’t agree. They all have to take the time to learn from one another and respect each other, even if our terminology might not seem right in your eyes. I don’t care if you call yourself deaf, crippled, person with anxiety, retarded, intellectually delayed, or whatever floats your boat. As long as we are on common ground and you give me a perfered term, you’re perfect and nobody can change that label but yourself. 

But I think we can all agree on one thing for those from the outside of the disabled community. You don’t know what to call us, ask, never assume. A simple question can make all the difference.