Posted in Uncategorized

Welcome to the Land of the Under Insured

Being sick sucks.

The last three weeks have sent me into walking dead mode, foggy brain with a dab of phlegmy rabies drooling. Typically for me, this is a sign of that dreaded bronchitis. A simple visit to the emergency room or doctor would do the job and I will be back to normal in no time.

Except this time around, I have no insurance.

For the first time in my life, with the exception of Medicare Part A (bare minimum hospital insurance) I have landed into the world of the uninsured…or the under insured of you want to be technical.

It all started in November when I got a letter saying Medicaid (Sunshine Health) would no longer cover me because of Florida’s budget cuts. So I went to the “Obamacare” marketplace to see what I can find. I found a decent plan, with a low deductible and vision plan to boot for less than the price of a latte at Starbucks. Fair enough, right?

A month later, I got letters asking me for a million pieces of documentation from Social Security since I’m on SSDI. As big of a pain in the ass that was, I learned that I apparently have Medicare and had it for the last 2 years. Surprise to me.

Another month goes by and they wanted more documentation from me that was basically hinting that all I needed was my Medicare, so I was forced to cancel the plan or be prepared to pay $300 out of pocket to keep this awesome plan I found. The ladies on the phone from both the new insurance company and the marketplace were very kind and prompt. I thought my dilemma was over, aside from hunting down a place that accepts this part B nonsense (spoiler alert, not many.)

A month goes by and a lovely letter from Social Security lands in my mailbox, informing me that half my check would now be used for Medicare premiums, leaving me without a way to pay my bills (since at the time, I wasn’t getting hours at my water park gig.)

After 4 hours camped out at Social Security with the bestie and a lecture from the Social Security lady on how canceling my health insurance was bad, I managed to fix everything so I can afford to live independently with what little I have. Only downside was no access to medical help unless I am on my death bed, basically.

Sure enough another month goes by and I get sick.

My luck.

Luckily for me, I was blessed with a tax return that not only got me into the minute clinic at my local CVS and meds, but a new pair of glasses, much needed.

The sad thing is that a tax return is supposed to be play money, something I was going to use to go home to PA for a few days. But I guess it’s back to trying to save money without a crisis happening. And knowing me, crisis is my middle name. (And to think y’all thought it was Marie.)

I return to work tomorrow after two weeks of mostly bed rest, but sad to say I am not 100% yet. I take my last Amoxicillin in the morning, and then I don’t know what. I have tons of over the counter meds stocked up just in case, but even that might not be enough to knock it out.

Honestly, it sucks being in the grey area of the insured, where you don’t work enough hours for company insurance, your assistance is cut off by the state, and paying for it out of Social Security risks you being homeless and broke. It’s even more annoying that because of your age, you don’t qualify for the Silver Care Plan or AARP for at least another 28 years, leaving you to fend for yourself, hoping you make it before something kills you.

I’m thankful for the health I have, even though it is far from perfect. But it is a shame in this country that health is a luxury. There are third world countries out there with socialized medicine and cheaper healthcare. And yet we as a developed nation can’t even get it right.

As I drop another NyQuil and sip some OJ, I pray the next few days brings healing and that I don’t regress. My body and my wallet can’t afford to be sick again.

Well, here goes nothing.

Posted in Albinism, Blindness, and Me, Overcoming Adversity, The Billy Blogs


When one thinks about the term “developmentally disabled” one thinks of the most common conditions and stigmas surrounding the term. Often, it’s associated with conditions like Autism, Cerebral Palsy, Down Syndrome, and Fetal Alcohol Syndrome, not to mention archaic terms like mental retardation among other things. In this day and age, developmentally disabled lies in the umbrella of cognitive and intellectual disabilities. None of which up until this point I ever associated with beyond being an advocate, teaching assistant, and at one point, my then boyfriend’s caregiver.

But in reality, it turns out I have been living a lie.

Upon discussing my current project of getting a self advocacy group going here in the metro Orlando area with Bill (who has experience in running his own group in my college days,) it came up in discussion that although I want to be an advocate, I don’t self identify as a person with a developmental disability.

“But Mandy, think about it. You were born with a disability, right? And you have trouble doing some things on your own, right? Then you’re developmentally disabled.”

After doing some digging around and conversing with my fellow advocate buddies, he isn’t too far off.

According to the American Association of Intellectual and Developmental Disabilities

Developmental Disabilities” is an umbrella term that includes intellectual disability but also includes other disabilities that are apparent during childhood.

Developmental disabilities are severe chronic disabilities that can be cognitive or physical or both. The disabilities appear before the age of 22 and are likely to be lifelong

Since my disability classifies as a genetic condition that I was born with, and given it limits me in some aspects of life, I apparently fall under the term of developmentally disabled.

But do I really count myself as such?

All my life, the term was synonymous with short buses, segregated classes, and special sporting events where everyone gets a medal or ribbon of some kind. The stigma surrounding the term is damaging to ones like me who never thought it could apply to my own self identity. Which is a shame since society’s ableist views often fogged my own, trying so hard to fit with the status quo in order to make it in the world without that kind of bias surrounding me.

But yet in a way, it makes me wish I saw myself as being developmentally disabled much sooner. There are many opportunities for support and services to those with developmental disabilities, more so than those who classify as legally blind, like I have always been labeled as. Many blind groups and services cater to those who acquire blindness, not so much for those who were born with it.

But it makes me wonder if my own self identity should be something I need to reconsider for my own personal gain. Or is it something I need to leave alone since there are those more deserving of the label society likes to toss around?

Maybe not so much.

In a way, I feel more connected with my fellow advocates with various identities, which makes me feel a sense of community I haven’t really felt before. This gives me the confidence I need to get my advocacy group off of paper and into the real world.

But yet, you can’t fully change 30 years of being called what you’ve always been. Maybe that change will come in time.

Besides Developmentally Disabled Bagged doesn’t sound like a catchy name for a blog anyway.

Whatever you want to call me, at least I know I am not alone.

Posted in Nerdy and Nifty, Out and About in Orlando

An Event Worth Dying For

Have you ever wanted to be a zombie for a day and live out your Walking Dead desires? Surprisingly, Orlando has quite a few opportunities to do so throughout the year, from organized flash mobs, horror events like Spooky Empire, and even a Zombie 5K, a simple dig around Facebook will help you unleash your inner undead.

One such group that organizes such events is ZoCorps, which hosts a yearly Zombie Walk, as well as the upcoming Zombie 5K still in the works. These Zombie Walks have taken over many spots in Downtown Orlando and Winter Park, wandering amongst the living, eventually ending at a local spot for noms that don’t involve brains.

This year’s walk has hosted on International Drive, a popular tourist hub full of fun and tacky attractions, needless to say the perfect place to raise a little mayhem.

For $15, each participant was made over by local make up artists, many are the artists behind the monsters of Halloween Horror Nights at Universal Orlando. From airbrushing to minor prosthetics, you got the VIP treatment that was of high quality.

Our Make Up station was housed in the Orlando Crossings Atrium, home of the epic comic and collectible shop Gods and Monsters and their almost monthly Nightnare at Camp Blood event, which showcases local artists, cosplayers, and vendors who specialize in horror themed goods. Not to mention cupcakes, because Zombies Love Cupcakes. This tasty treats come from Ria’s Smashcakes.

Although we were asked to show up early around noon, our step off didn’t happen until 5pm, which required a lot of waiting. But there was plenty of shopping to do at Gods and Monsters, which not only houses comics and collectibles to purchase and feast eyes upon, but also various arcade games to pump quarters in and board games to borrow, as well as The Vault, a speakeasy style bar hidden in the back of the store, which is the ultimate nerd den.

Sadly, the Vault didn’t open until four, but a sober zombie is a happy zombie, right? Maybe?

At 5pm, we were carpooled over to the Orlando Eye area, where we were given the route and the rules, no chasing the locals beyond three steps, no destroying property, and to retreat out of character if things get nasty. Our scenic tour took us around several businesses in the I-Drive 360 plaza, as well as the parking garage, which gave a great place to acoustically get your groans on.

Our final destination was The Sugar Factory, which agreed to house our undead horde, but the Orlando Eye security didn’t appreciate our little group of ghouls and we were asked to leave. But not before the manager at the Sugar Factory turned on Michael Jackson’s “Thriller” as we made our deadly departure to a wildly excited crowd of diners.

As we were leaving, we stopped by King’s Entertainment to use the restroom. That’s where Orlando Police met up with us to get the scoop as to what happened. With a laugh and a few compliments on our make up, the cops let us go, and with management approval, we took the party to King’s instead.

All in all, the event was remarkable, even though we were ousted from our dining ressies at Sugar Factory. In the end, it was totally worth it. I can’t wait to see what the team at ZoCorps comes up with next.

Special thanks to RJ for purchasing my ticket and making this an epic date night I won’t ever forget.

PRO-TIP Be sure to purchase your cleaning supplies in advance. Some of the make up used doesn’t come off too easily without the aide of make up wipes, baby wipes, and rubbing alcohol. These are must needs for after, otherwise, you’ll have a hard time catching an Uber, as we watched one cancel on us right in front of our undead eyes. Thank you Guiscard for the ride home and an epic sense of humor.

Posted in Mandy Eats, Out and About in Orlando

Mandy Eats- Let’s Call It Bella Notte

Side by side with your loved one
You’ll find enchantment here
The night will weave its magic spell
When the one you love is near

Disney’s Magic Kingdom park is a mecca of dining opportunities, often overshadowed by the gems many camp out in front of their computer or My Disney Experience account up to six months in advance to get, like Be Our Guest or Cinderella’s Royal Table.

Little do they know that somewhere special is right in front of their nose the whole time.

May I present to you Tony’s Town Square Resteraunt. Located right next door to the Town Square Theater Meet and Greet on Main Street USA.

Tony’s is a gem all of it’s own, what it lacks in character dining flare, it makes up for in its theming. Based off the 1955 Disney animated film Lady and the Tramp, Tony’s takes you to that beautiful night, that Bella Notte, when the dynamic doggo duo fell in love. Artwork and atmosphere take you to that place where love began, from beautiful artwork and Italian style kitchen props gracing the walls to the cutest little fountain I have ever seen, it’s all a feast for the eyes as much as it is for the food itself.

I mean, come on, even the restrooms have cute theming as well. (This honestly gave me a good chuckle.)

But what about the food?

Tony’s is an Italian restaurant serving up classic Italian dishes, from classics like pizza and chicken parmigiana to the infamous first date spaghetti dinner of Lady and Tramp, complete with giant meatballs. Needless to say, I hope you packed your appetite, as the portion sizes are actually up there with the prices. You get what you paid for, so much so many people around us shared their meals “Family Style” despite being sold as individual plates.

Although there are options for antipasti or appetizers, there really wasn’t a need for it, considering the table gets offered a nice plate of breadsticks with a garlic and olvie oil dipping sauce. Great way to start a truly authentic meal.

I had the Chicken Parmigiana, a lightly breaded chicken breast topped with mozzarella cheese and Tony’s marinara sauce, served over a plate of spaghetti. A simple dish sure packs a lot of flavor, the sauce flavorful and hearty, the cheese super creamy, and the chicken nice and tender. For a girl who grew up in a half Italian family, this dish gave me a taste of home.

My bestie Amanda ordered Shrimp Fettuccine Alfredo, which is also offered in chicken form as well. This delectable portion of shrimp is served on a bed of fettuccine with a nice creamy Alfredo sauce drizzled on. It wasn’t too much and it wasn’t too little, but somehow rationed into the perfect dish that any Alfredo fan would enjoy.

Although stuffed full of Italian goodness, we decided to treat ourselves to dessert. Despite being small in comparison to other dessert menus on property I have seen, the choices offered at Tony’s pack in the sweetness and variety that anyone with a sweet tooth would love. From Gelato or Cannolis, a simple chocolate cake or cheesecake, each item looked and sounded so amazing, it was hard to pick just one.

In the end, I went with the Tarimisu,Kahlúa Espresso-soaked Lady Fingers and Whipped Mascarpone topped with Mocha Cream. I have had plenty of Tarimisu in my lifetime, but never of this size. Holy Hannah, this piece was huge. I almost didn’t finish the whole thing. The Kahlúa was strong with this one, and in a good way. The lady fingers soft and dainty (like anything called lady should be.) And the strawberry a nice touch to an already note worthy dessert.

Amanda, being the typical New Yorker she is, decided to go for the cheesecake. Although small in comparison to the Tarimisu, the cheesecake was super rich, much like the famous cheesecakes served up in the Big Apple itself. A small side of strawberries complete the course, which vary by season according to the menu.

Tony’s is a great little getaway from the hustle and bustle of Main Street and the ultimate date night or bestie lunch. It might not have the Belles and whistles (see what I did there?) of other popular eateries nearby, but one stop into this quant bistro will easily make you fall in love.

It’s a Bella Notte anytime of day. Bone appetit!

Shout out to Amanda for treating me to this best kept secret hidden in the Magic Kingdom so I can share it with you all.

Ready to dig in and share some spaghetti and more with the people you love? You can book a reservation at Tony’s Town Square by calling Disney Dining at (407) 939-1947 or by downloading the My Disney Experience App on IPhone and Google Play.

Posted in News and Opinions, Overcoming Adversity

Dear Florida Government,

To whom it may concern,

Im pretty certain you might pass over this letter like you do to many of your non-lobbying constituents, but I figured if I have a voice, I might as well use it.

I’m a thirty something year old woman who was dealt with a bad hand at life by being born legally blind. As a result, I’m only able to work part time despite wanting so much to be a so called contributing citizen that your Republican party wants me to be. Working full time is a dream of mine that I’m willing to chase, but in order to do so, I need access to migraine reducing medication that will slow my Nystagmus down and help prevent eye strain, much needed when my line of work requires both being outdoors and on a computer system.

Since I moved to Florida five years ago, I was able to get on SSDI after being on SSI much of my adult life after working enough credits to do so. SSDI helps pay my rent and my bills, especially when my weather dependent work at a water park reaches slow season. It is a godsend that is much needed.

However, Medicare was given to me with no prior knowledge back in 2015. Apparently somewhere along the line, my Medicare card got lost in the mail, and it wasn’t until recently while trying to pick up a Marketplace Plan after you decided to pull my Medicaid from my SSI days that I found out this Medicare exists. Because of this plan existing, I had to pull out of Marketplace because I apparently don’t need it.

Today I get a letter from Social Security that marks you as the culprit for no longer paying my premiums, resulting in a mad dash to figure out how to pay my rent next month when my hours at my part time job are for the time being non existent.

Keep in mind, with the exception of a stretch of 6 months working full time at Disney up until I eventually was forced to resign due to my physical and mental health, I never got the chance to see a doctor, nor have I ever had to check into a hospital. Medicaid was useless to me since no doctors were accessible to me, and Medicare is essentially just as bad, If not worse. My disabilities prevent me from driving, and since my disability isn’t considered developmental or intellectual, I can’t get the help to navigate a healthcare system that developed shortly after my 26th birthday, when I was dropped off my parents plan.

Looking at the four hundred something dollars I need to pay up for a service I never used, for a service that no doctor within an easy one bus route or a cheap Uber ride accepts is like Prince John robbing the blind villager in Robin Hood. And sadly, I’m that villager.

My day tomorrow will be spent camping out on hold for hours on end with social security hoping to God that they allow me to cancel all of this so I don’t have to worry about being kicked out of my home, along with hundreds of other Americans being dealt with this harsh blow right now.

I would have to say I am fortunate enough to be able to squeeze by without a lot of specialty visits, considering my disabilities aren’t life threatening as of yet. But then again how will I know if the broken health care system won’t even take a glance at me without being armed with a Blue Sheild?

But I look at others who have more prominent disabilities than mine who can’t even get out of bed without help from a waiver program, many who don’t have the opportunities like me to work at least a few hours a week to have some food money come Friday morning. It makes me wonder if you are doing this to them as well. How many people’s lives will be in jeopardy because of this? How many deaths and misdiagnosisis will be made from people like me ignoring my needs because a roof over my head is more important than medication?

I ask this of you, the men and women who sworn on a bible no less to protect us Americans and put our best interest in mind. How is taking more money from the already fixed incomed going to help them? We already know it’s helping you in your lavish vacations and fancy dining sets.

I urge you as leaders of this great state and country to take a step back and help your fellow men and women who just want to have the same opportunities and access to healthcare as everyone else. Access to a doctor shouldn’t be a luxury, it should be a necessity like our armed forces and infrastructure.

Isn’t it about time those who through no fault of their own have been dealt with disability and poverty get the help they need so they can function in a society that should be open to them? Isn’t it about time you stop for once and reach out to those in need beyond a cheesey campaign ad photo op and do the right thing? I’m sorry it’s taking money out of your raises, but I’m sure the God you believe in so much to the point of plastering his name on school buildings will Fast Pass your way into heaven for taking the time to help those in need.

Help us with a hand up in healthcare, and please show us compassion. Everyone needs equal access to healthcare, no matter the wallet size.

Now if you excuse me, I got some phone calls to make.

Warm regards,

A Taxpayer

A SSDI Recepient

A Registered Voter

And more specifically


Posted in News and Opinions

Night to Shine, My Two Cents

Lately, my Facebook has been a buzz about the Night to Shine prom held for teens and adults with disabilities. Several of my newfound self advocate friends and a few of my former students have posted pictures of their make overs, live feeds of them shaking it up and dancing the night away. So much joy and happiness on their faces.

Until you drop into several of my disability blogger groups…and Holy Hannah, is the tone ever different.

Essentially, the vibe given hails the event as ableism packaged into an inspiration porn fluff piece for the 11pm news. To many, the prom promotes segregation, giving the disabled a so called safe space rather than making the real proms held in schools more inclusive.

So, where do I stand?

Let’s go back to my high school days circa mid 2000’s, my first prom I went alone and after about an hour, I decided to call my dad to pick me up because I felt like I just didn’t fit in. Yeah, my friends were there and all, but for someone who was never asked to go with as a date, it made me feel awkward. What made it worse was that the castle decor on the walls had each couple’s names on then, while my block on the wall just held my own. At least my dad came to the rescue with Twistee Treat ice cream and a binge watch of Sid and Marty Krofft VHS tapes he found in a garage he cleaned. HR Pufnstuf and fudge covered anything can cure a broken heart.

A year later, a group of my friends tried to make the most of my no date scenario by purchasing my ticket to senior prom, without my blessing at first but I went with it because why not? That would of been the year I could of had to redeem myself and make the most out of prom night, but I sprained my ankle while falling into a sinkhole in the fields of my high school after the mock car crash assembly. Of course, it didn’t help that I coached Special Olympics the next day and needed to be there for my athletes, even if it meant me running the track with them…ouch! Prom that year was spent on a yacht the school rented out, so not only was I seasick, dateless, and swollen, but also annoyed that yet again, I blew a chance at a prom worth remembering. It wasn’t until my friend Marc decided to invite me to the college winter formal (Snoball) my junior year that I was able to make up for my shitty proms.

But the fact is that many people with disabilities never get that chance, some have never set foot in prom ever due to school administrators “looking out for their safety” or whatever the case may be. The ones who made it to prom like I did sometimes don’t have the best of nights, resulting in bullying and fake dates and that isolated feeling I had both times I went.

My school was, for the most part, inclusive and allowed anyone to purchase a prom ticket, including students in the Skills for Life Academy, our high school’s post graduation program for kids with developmental disabilities. But the fact is that some schools are way behind the times.

And what happens to those whose high school years passed them? Don’t they deserve the same opportunity as their peers had?

I know, I know, I totally get the flaws of Night to Shine, how it doesn’t fully promote inclusion in part that non disabled peers aren’t allowed to go unless they volunteer. Or the one thing that bugs me is that it’s Christian based and not a single location of the proms are hosted by other religious and non religious organizations. The vibe of the prom set up is a bit cringe worthy, but then again, no event for the disabled is perfect.

The aim of the event from what I can tell is to celebrate those who never get the opportunity to be celebrated by society. Everyone deserves to feel loved and appreciated, and hopefully these events have an opposite effect and strike up a conversation that will eventually lead to prom inclusion for all.

There are a lot of improvements to be made to this event, but for now, it’s time to dance away those troubles and enjoy this marvelous night.

Posted in Overcoming Adversity

Random Thoughts of a Job Seeker

Another day at work beckons me during the slow season. I grab a cup of my team captain’s magical blend of Cuban espresso and generic break room coffee and begin my day setting up my ticket booth. I read up on the news happening in the parks and browse the internal application board, planning out the next move in my career.

I had two interviews last week, one I’m still waiting to hear from and the other was a denial based on “lack of confidence” in my voice or whatever, even though I have mentally and physically prepped for this moment like a solder off to battle. Needless to say, I need some serious boot camp.

I look at some of these posts and wonder how on earth people can qualify for anything if not given the chance to? Why need 5 years experience for an entry level position? Isn’t it called entry level for a reason?

It seems that’s the norm wherever I go these days, toss an app with a resume into cyber space, and hope for the best. But the lack of an email or phone call is disheartening to say the least, it makes you wonder if there really is a person out there on the other side. Reminds me of being little writing to Santa in hopes of that epic Quints play set I wanted as a kid and not getting it. You still owe me, old man. I even passed my Mad Minute math test for you and even helped mommy do laundry. How rude!

Ok, I’m getting a bit off track here.

As I click away at the postings and read away, I want to picture myself there, rubbing elbows with the big bosses and gossiping over wine with Susan from Accounting and Diane from Human Resources over the latest 50 Shades movie as we paint our little tipsy minds away to a Van Gogh painting.

But then I’m often reminded who I am. Just a low class chick who flunked out of college for love, who got tied into melodrama worthy of a Lifetime Original movie instead of picking an internship that actually meant something more than dressing up as a giant worm creature, crashing rock concerts and elementary schools. Although I admit, those were some fun times.

But fun doesn’t pay the rent, nor does it buy happiness.

Reading through post after post makes me wonder if I can change my life now, or if that ship has already sailed. I want to be successful, but how can one become that if the world around them doesn’t see it that way?

I wonder if there is something wrong with me. It can’t be the way I dress since I did a massive update on my business clothes, and it can’t be the hair since I had it dyed and cut recently. Is it something wrong with my brain? My eyes? Are they looking at my dancing eyes? Shit…don’t make eye contact…too late..

Or is it something else?

As I take a sip of yet another cup of awesomeness and make idle chat with what is left of my original group of opening team members, my heart tells me I should stay where I am welcome and my talents are embraced. I love the people who have become family to me, who have helped me grow into a stronger person.

But is it silly that I want more out of life? Am I even allowed to think that way given my circumstances, or am I just delusional?

Time to drop application number 16 into the mix, along with a simple wish that one of these days, my dreams can come true.

But in the meantime, would you like to add a dining plan to your ticket today?