Posted in Lights, Camera, Universal!, Overcoming Adversity

Reaching Greatness

Throughout my whole work history, I was met with a lot of “No, you’re not able to…” or “I’m sorry, you’re just not ready…” Any sort of dream job I wanted to chase met with it being crushed. Although I have moved around a bit since starting my time at Universal, finding greatness has met with it’s fair share of challenges. One interview after another, same answers as above. Many trips and phone calls to the Career Network and many days of job shadowing in hopes I can get a taste of what I had in store, all led me to finding greatness.

Greatness is more than a new role in Guest Services, a dream I had since my Disney Days when I heard more “You Can’t” than “You Can”. Greatmess is breaking the walls of doubt down, proving you can curve your anxiety and overcome anything life, or even a guest, throws your way. Greatness is spending over a year and a half taking every bit of feedback a bad interview or a teachable moment in your current role and turning it into lessons that follow you beyond the punch out of the time clock.

It’s been almost 6 years since I began this journey to find myself, to take a freak of nature hurricane closing my place of work down and an eviction notice and make the most of it. It took years of denials, troubling events, and my own self doubt to find where I belong.

And now, I can say I made it.

My new role has given me many challenges, but each challenge has been an opportunity to help others and in the long run, myself. It’s never the same thing every day, which makes each day as exciting and adventurous as the last. For once, I can say that I enjoy my job…and mean it.

Nobody has treated me any different since joining the team. Come to think of it, since coming to Universal almost two years ago, nobody has treated me any different at all.

I found a place where my talents are celebrated and my flaws are overlooked.

To me, this is reaching greatness.

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Posted in Lights, Camera, Universal!, Out and About in Orlando

Mingling with VIPs at Make M Smile 2018

Taking a bite out of crime with McGruff the Crime Dog and the Universal Volunteers while waiting for our buddies to arrive.

On Saturday June 2, I had the opportunity to mingle with some very talented dancers from The Russell Home for Atypical Children along with the Universal Volunteers for the 16th annual Nathaniel’s Hope Make M Smile Festival at Lake Eola Park.

Nathaniel’s Hope was started by the Kuck Family shortly after the death of their four year old son Nathaniel, who was born with various disabilities. Since his death, Nathaniel’s legacy lives on in a variety of programs that celebrate the lives of children and adults with disabilities, better known as VIPs. With a Birthday Club, a church based respite program called Buddy Break, a Christmas toy drive in the form of Nathaniel’s Toy Shop, and the annual Make M Smile festival, there is plenty of love for all, and most important, limitless fun for everyone.

Along with volunteers from Universal Orlando Resort’s MyAbilities Network, a diversity resource group, I spent my morning bright and early at 5am, starting the morning with breakfast followed by a speech and prayer service led by the Kucks. We were then sent out to help the vendors and exhibitors set up their booths, while having some fun along the way.

Setting up Animal Land with the Universal volunteers, stopping to take a photo with a goat along the way.
Showing off our superhero strength with a UCF Shape of Heart volunteer and Batman
While walking back to meet up with the rest of the group, I met Donovan and his camel friend who were passing out free ice cream. Of course, me and Rolex had to get a photo with him. Thanks for the treats.

Later in the morning, we were introduced to performers from The Russell Home, the first private, non profit, and non state funded care home for children and adults with severe disabilities in the state of Florida.

The Russell Home Dancers dancing to “Let There Be Peace On Earth”

The home was originally opened in 1951 by Vantrease Russell out of her own home shortly after taking in the first child. Since then, the home has grown to house up to as many as 25 children and adults with special needs. The home includes a nursery, dormitories, playrooms, large dining and living room spaces, an on-site daycare, classrooms, a thrift shop, and so much more. Many of the residents have lived their whole lives there and are happy to be surrounded by a true family in the form of the residents and staff. Today, Grandma Russell’s grandchildren have taken her place and have kept her legacy alive.

“Angels Among Us” done Ballet style from the Russell Home dancers

A group of the residents and day care students take part in a weekly dance class. The dance class had the opportunity to become a part of the entertainment line up for Make M Smile, showcasing their talents in a series of three performances, one of them being a synchronized wheelchair dance.

The Russell Home Wheelchair Dancers get ready to perform “Remember the Magic”

After their noteworthy performance, the Universal volunteers and myself took the dancers around the lake for some fun. My buddy for the event was a young lady named Katie, who although hesitant at first to join in on the fun, opened up the moment we bumped into her idol Wonder Woman. The smile on her face was priceless as Wonder Woman signed a Chik-Fil-A fan for her.

Wonder Woman hugs Katie after giving her an autograph
Who is the real Wonder Woman? You decide.

Our buddies had a blast getting to meet a variety of characters, grabbing some free snacks and swag from the various booths that surrounded the lake, and getting a chance to interact with live animals in the Animal Land, including a baby gator from Gatorland.

Gator kisses
Gators need love too.

The event brought smiles and sunshine to many VIP buddies and their families, as a variety of people came together to share resources, stories, talents, and most importantly, love. What a wonderful way to kick off summer by celebrating the lives of these wonderful kids and adults.

Me and Katie hanging out with the superheroes

Interested in joining the party next year? Nathaniel’s Hope hosts Make M Smile on the first weekend in June every year, with multiple opportunities to get involved year round, from hosting a toy drive for Nathaniel’s Toy Shop, to helping your church host a Buddy Break. Find out more by visiting their website here.

Posted in Nerdy and Nifty, Non-Mighty Projects, Out and About in Orlando

Hello Moto. Inside #ConnectOrlando

This past Thursday was the first time I was ever able to attend a real social media event.

They rolled out the red carpet for RJ and me.

#ConnectOrlando is an event sponsored by Verizon Wireless, showcasing some of their newest phones, like the Moto Z2 Play and the Moto G4 Plus, in addition to their new Unlimited plan that now covers Mexico and Canada. So many reasons to celebrate, and a lot more reasons to socialize.

A picture is worth a thousand words as me and RJ pose with a giant gold frame.

The event was held at Snap Space, a local art gallery in the Mills 50 district of downtown Orlando. Food and access to an open bar were included for free, with a DJ and a few spots for photo ops, given the event’s main focus on Instagram influencers.

Rolex the Llama poses in front of a Hello Moto backdrop

Which means Rolex got to party like the big kids.

Rolex made friends with Captain Morgan at the open bar.
Rolex enjoys some spring rolls and fruit
Moto-Rolex…Rolex poses in front of a Motorola sign

All in all, the event was a great way to connect with local bloggers and influencers in a nice relaxing manner while taking in the local art and photography showcased in the gallery.

Me, Rolex, and RJ pose with a golden picture frame, American Gothic style…only drunker.

At the end of the night, each guest was gifted a Mophie wireless charging dock, something that has been on my to buy list for awhile now. Despite the package focusing more on iPhones, my Galaxy S8 handles it like a pro, even with my Otter case in the way.

Verizon Swag Bags on display
Morphie wireless charging dock, the gift found in the swag bag.

A special thank you to the Central Florida Bloggers Facebook group for spreading the word on this amazing event. Looking forward to many more in the future.

Posted in Albinism, Blindness, and Me, Overcoming Adversity

Llama Gate, When The Ableists Meet Rolex

The last two months has been a nightmare financially for me and RJ, well, mostly me anyway. With Social Security issues, me randomly becoming sick and being forced to take a few weeks off to recover from the flu, and hours at work being a tad wonky, today was the day all of that would get better. All those issues are a thing of the past. We finally broke even from a setback, and we did it together.

We finally were able to do a proper food shop that wasn’t all ramen and explored the new Five Below that just opened next door from the food shop. Five Below is a chain of stores from the Philadelphia area that sell trendy goods for $5 or less, mostly toys, shirts, household goods and decor. I went in the store looking for flip flops and came out with one extra thing.

A llama that freakishly looks like my cat.

Llama Doppelganger meets kitty

Doing what any pet owner and avid shopper would do, I posted about my fun find, the first time in months I did something silly beyond picking up my Horror themed coffee at the convention at volunteer at. I figured I would get a few laughs and hearts, until it became an attack on me spending money on something dumb and being financially responsible. Keep in mind, I haven’t posted anything positive in forever and this little post was what I thought would of been a fun one.

Only it didn’t turn out that way.

The vibe I got in the comments was unbelievable. You would think I took out 6 credit cards, went to Zale’s, and grabbed a Rolex. Or met my bookie on the street for a fresh round of fentanyl laced bullcrap. Or maybe even robbed your grandma.

But no, this is a $5 llama we are talking about here.

A fucking llama!

Look, I get it. I have rode the struggle bus most of the winter season but have managed to keep myself afloat with a little hard work, sacrifice, and teamwork via RJ. We have purged our collections and sold stuff online to make a couple extra bucks, we learned to master our budgets a little more, and gave up many opportunities for growth and socializing because we simply can’t afford it.

Don’t you think we deserve a little treat for making it this far?

Like I mentioned before in several posts, we all have our vices. Whether it be cigarettes, a trip to the spa, or a cup of Starbucks before work each day. Mine just so happens to be toys and kitschy stuff, although I have been slowing down on my spending like any good person would do.

After reading these posts several times, this kind of reaction has become the norm. Even going into the park I work at for free brings negative feedback, hence I gave up what I love to put a strong front so nobody can question my doings.

Which brings me to a point.

Ableist mindsets are alive and well. People still assume a disabled life needs to be a shut in life. A disabled person should be stripped of ever having fun or spending a little pocket change on something silly. The attitude we get over something small is as if we committed a crime, even when the money spent is our own from a job. I have seen it with Bill and his staff, and I see the same in me, but the sad part is these people have no say in my finances.

After the events that have now playfully become Llama Gate, a creative idea has set in to help me get that kick in the ass I need to keep going on my blog.

Meet Rolex the Drama Llama. He will now be a vital part in bringing my once dead Instagram to life. His adventures will be meant to bring positivity as well as kill the misconception that the disabled can live a fun life within their means and without.

And to all his haters, may I suggest eating a bag of chocolate phallic cookies, which surprisingly are pretty damn good.

Rolex the Llama eating a bag of questionable and NSFW shaped sweets

Follow me and Rolex on Instagram as we shake up the world together, while unknowingly pissing off people in the process, at LegallyBlindBagged.

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

Develop-mentality

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.