Posted in News and Opinions, Out and About in Orlando, Overcoming Adversity

Aftermath

Hurricane Irma had to have been the craziest storm I have ever wittnessed ever since Hurricane Sandy hit almost five years ago. The overall energy and magnitude of the storm was enough to stop a city that revolves around theme parks and attractions for two whole days, often unheard of in recent memory.

So how did I do?

Well after RJ and I ventured into the feeding frenzy that was Walmart and stocked up on mostly dry goods in the event out power would be lost for weeks on end, we braved it out with junk food and scary movies, waiting for the moment when power would go out.

Oddly enough it never did.

Seems like we had it easy, right?

Take a look at this. Yes, that pole/tree/whatever the heck it is has impaled the roof of my building.

Which resulted in some flooding. 

Which resulted in the loss of several blankets, as well as my stove and toaster, which became waterlogged after a kitchen cabinet of all things sprung a leak. 

Compared to most, we made it out easy. But the clean up process has been insane. Workers have been on my roof since about 9pm last night non-stop, drilling and chizzlimg away at the cracks and placing new files. Once the big work ends outside, the inside work begins. From killing off the water damage to replacing my stove, the whole process could take a few weeks.

Despite my constant griping due to lack of sleep or nutritious food, I am thankful to live in an apartment complex that has treated me good thus far.

But I am still longing for a sense of normalcy. 

Hopefully soon.

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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 News and Opinions, Overcoming Adversity

Shameful? Please

So recently, a video surfaced from a motivational speaker by the name of Joey Papa, whom you can watch here, explaining his way of connecting with “Special Needs” people. In the video, Joey shares a rather unconventional tip for those who can’t seem to find the right way to connect.

In this video, Joey asks his viewers to imagine the “most shameful and embarassing moment of your life” and have it constantly repeated everywhere you go. To him, that’s the way disabled people live their lives. 

Um…what?

Since when did disability turn into a constant show of embarassment and shame? How can a man who claims himsef to be a devoted motivational speaker downplay the lives of so many people who are trying to live their lives like everyone else? Kind of defeats his purpose, right?

There are many different ways to connect with people who have any kind of differences, disability, race, sexualality, or otherwise. Using shame as a way to promote empathy is like comparing a black person to that time you farted in front of your boss, or a person who identifies as transgender to that one time you were embarassed on a date by your parents who happened to be in the same place at the same time. Sounds silly, right? Not to mention stupid. If we don’t use that frame of mind in learning about other’s differences, why must this be a way to teach others about our own? Where exactly is the logic in all this?

The fact that this video exists along with that frame of mind is a common example of why I blog, to educate others about my life experience for those afraid to ask. People who only know about life as an able-bodied person are scared of the unknown and associate our lives with shame and embarrassment. These are the kind of people who make life hell for us. This frame of mind doesn’t create empathy or a sense of bonding, but rather instills the fear of making that connection by associating your most embarrassing moment with another person’s life.

Embarrassing moments only last for a few minutes. My life has been constantly going for about 31 years now. There’s a big difference between the two and those paths should never cross, not even in theory. 

I know at times I tend to have an internal ableist mindset of my own, often setting the bar too low for myself. Although sometimes I feel shame in myself, never would I wish this shame upon anybody else, even if it’s intentions are for the greater good of society.

What the heck is this guy thinking?

To really connect with people with disabilities, one must be open to differences and break that cycle of fear and resentment. A simple hello, a helping hand with consent, and an open mind are all things that can make any connection worthwhile. A disabled person should never be treated like a shameful moment in your life on replay. We are all part of the same human race with the same wants and desires as anybody else. 

Sorry Joey, but I am not your embarrassing moment. I am not here to be shamed by your viewers, and I demand the same respect you would give to anybody that is not “Special Needs.” I feel that your heart was in the right place in attempting to educate others, but you have really missed the target on this one. You want to make the world a better place, but you’re only teaching others to hate by teaching them to shame others that are different from themselves. 

Back to the drawing board for you. Perhaps you might need a Disabilty Consultant to assist you in your speeches. Just saying 😉

Posted in News and Opinions, Ovarian OMG!

It Couldn’t Happen To Me…But It Did #OvarianCancerAwarenessDay

I remember as if it was yesterday, heading to bed after a long day of work, having what I thought was my typical bad PMS acting up again. I checked my calender and my Period Tracker App, only to discover I still had a week and a half to go. Needless to say, I found it odd, but didn’t question it. My periods were always a few weeks off, and when they came, they came with a vengeance. I popped some Tylenol, gave the boyfriend RJ a kiss, and called it a night. I had work the next day and needed my hours. No way was I letting this get the best of me.

“It’s just cramps.”

3am brought a horrible pain in my lower abdomen I have never felt before, it was as if someone was making balloon animals out of what I thought naively was my appendix.  I made myself a hot bath to soothe my stomach, but the pain was so bad, my body went into a shock of sorts, I never felt so cold in a hot bath in my life. 

RJ woke up and saw me curled up in the bathtub in a fetal position, begging me to call 911 because even he knew something was off from my typical PMSing. We must of argued back and forth for what seemed like forever about me calling an ambulance. I had work in a few hours, plus why would I waste time getting help for period cramps? Imagine the medical bills for something so mediocre, even though this was the worst pain in my life.

RJ dialed the phone and passed it on to me as a explained what was going on. I was then whisked away to Dr. Philip’s Medical Center, where it was discovered that the culprit in this case was my left ovary, they originally told me there was a golf sized tumor growing on it, and if I did go to work that day, it would burst and I could of died. They needed to get this out of me fast, then I was warned that in addition to the tumor, the ovary will come along with it. 

I never been so scared before in my life. This was less than six months living away from my family, RJ being the only person I was close with within a thousand mile radius. He moved down a week prior to find work after he wasn’t able to extend his internship working a farm in Arkansas. Lord knows what would of happened if he never came down.

I remember waking up to a catheter in me, as well as a bunch of staples in my lower abdomen. The doctor came in and told me that the tumor size was wrong at triage, it was actually the size of a grapefruit, and because of it’s size, out came the left fallopian tube.

I became half a woman.” was the first thought that went into my head. But despite that odd feeling, I was thankful to be alive. 

A few weeks later, the lab confirmed that there was malignancy in the tumor, early onset Ovarian Cancer, which could of been worse if I went to work that day and let it rupture.

The average age of diagnosis is 63. At the time, I was a few days shy of my 28th birthday. Although it was uncommon to be diagnosed so young, it is a grim reality. Usually, treatment would consist of chemo therapy and laser surgery to keep the cysts and tumors at bay. But since they removed the source of the problem and the surrounding area, the cancer was gone, and about a month and a half later, I was back to work. I have been going for yearly checkups and for the last four years, I have been cancer free. 

Since then, those crazy death like periods began to subside, my cycle became more regular, and the cramps that would confine me to bed for days became mostly a thing of the past. I was told I could still have children but it will be a tough process, which isn’t a top priority for me as of now, but good to know for down the line. 

So pretty much, I became a ticking time bomb years before landing in the hospital. I knew something was up, but I wasn’t the kind of person to run to the doctor. Insurance is expensive and I went without it up until I got Medicaid, and even that became hard to use since not many doctors take it and many of those doctors aren’t accessible in public transit. Health became a bottom priority over work and paying my bills.

Guess the most important lesson is to learn to take care of myself. Cancer DOESN’T discriminate. Even Ovarian Cancer. It’s always best to get checked out often. Many free clinics and Planned Parenthood offer screenings. Your life matters over anything else. The bills and adulting can wait, your life can’t. If you show signs of irregular periods, frequent cramps and abdominal pain, loss of appetite, frequent urination, indigestion, weight loss, and changes in bowel movements, please consult a doctor. Although you think it might be nothing, it could be something you never imagined. Always play it safe.

Posted in Lights, Camera, Universal!, News and Opinions

Tapu into Accessibility, The Theme Park Wearable Review 

Author’s NoteThis is just my experience as a test subject for new technology coming into Volcano Bay. As always with new technology, it’s always changing and evolving, especially with it being part of a new theme park experience. This is just my first impression, as things might change within the coming weeks. There is only so much I can share due to confidentiality reasons, but the info on the wearable shared is common knowledge already covered in the media. This is my experience with it. Yours may differ unpon entering the actual park when it opens May 25.

As many of you know who have been following the development of Universal’s newest park Volcano Bay, you will come to find yourself staring at what appears to be a wrist watch that’s supposed to replace standing in line.

TapuTapu Wearables

This little device is called TapuTapu, and like it’s very similar yet distant cousin the Disney MagicBand, it gives you the opportunity to reserve your place in line for rides so you don’t have to stand there all day. Disney’s MagicBand system works more like a free FastPass that you could only use if the ride is offering a time slot. The flaw in that system is that spaces become unavailable for a same-day visitor since certain guests are able to book months ahead of time. Universal’s TapuTapu system puts you in a virtual line so no matter what time you came in, you have a return time and don’t need to waste time standing around all day. This gives you the opportunity to go play in the lazy river or the wave pool, maybe even go grab a bite to eat. The TapuTapu will let you know via  vibration and a message on an LCD screen that your spot in line is ready for you to go up and enjoy, a perk that MagicBand doesn’t offer since you have to mentally keep track of your times or use a phone app.

As a recent test subject for TapuTapu, as well as being a former cast member at Disney who has used the MagicBand, each system has had it’s fair share of pros and cons when it comes to accessibility for those with disabilities. When working at Disney, I had several guests with sensory processing issues complain about wearing a wearable on their wrist. Just recently, Disney introduced The MagicBand 2, with the option to pop out the middle of the band with the guests’ tickets and FastPass information and securely place it into a keychain or a medallion that could be hung around the neck or held on a purse or belt buckle. 

Comparison in design between MagicBand and MagixBand 2

Unfortunately, there has yet to be an option for TapuTapu, other than a parent or caregiver carrying the wearable for them, which for older children and adults, can lead to a feeling of lost independence.

Same goes for my situation as someone legally blind. Although the wearable has tactile feedback in terms of vibration, the visuals on the wearable’s screen are a tad small. The only thing that was legible for me upon testing the wearable is the wait time, which is written in bold font. But the name of the ride is written so small, I fear that either I will forget what ride I tried to get on, or possibly wander so far to the park, I’ll get lost. 

From what I have heard, provisions have been put into place so that you are not rushed to get back into that line, unlike how it works with the MagicBands, where after about 15 minutes past your time, you’re pretty much out of luck and have to book another spot if it’s available. You also have the opportunity to change what ride you want to go on just by tapping the wearable to the totem kiosk at the entrance of the ride. No need to go to a centralized kiosk, like that other band.

Another issue I have come across is a minor one but could lead to issues with people who have learning disabilities. Given the park has a very thick Polynesian theme, the names of the rides are often hard to pronounce, and unless you have a really visual memory, navigating back to your original ride could prove difficult. Luckily, there are large maps throughout the park in case such a thing happens. But to those who are visually or cognitavilyy unable to read maps, this won’t be much help, unless the map has an interactive future similar to both Disney and Universal’s phone apps that give you step by step instructions or visual cues to where you want to go. Obviously, carrying your phone around most likely will be cumbersome in a park like this, given that it is a water park.

As a person with a disability, using wearables in theme parks have its fair share of issues, and although in a technical sense Universal has a more advanced wearable, it’s still isn’t as easily accessible in terms of the MagicBand 2, given their feature of comfort for those with sensitivity processing issues. And from visual impairment standpoint, the TapuTapu needs a lot of work, since that tiny little screen replaces the accessibility of a phone or a tablet when it comes to keeping track of your ride times. Making that screen text larger will make all the difference, as would the potential of making it audible for those who can’t read it at all for one reason or another. Even setting up special totem stations that will read the wearable aloud to you would be a great workaround on that, especially if going the route similar of a talking watch won’t do.

After testing, I was able to speak to a gentleman who works on the project. His reply was that ” Since day one of testing the prototypes, we have known accessibility was a bit of an issue. Although plans are in place for such situations, most likely they won’t be ready by grand opening day. But rest assured, they are coming.”
I have worked on both parks during the inception of their wearables and bands and change does come quick as technology advances. In the meantime, team members will be on hand to assist anybody who needs it. Although the workarounds might give a very independent disabled person the feeling of lost independence,  the same goes for any visitor who finds themselves at Volcano Bay. The park is one of its kind and quite possibly the first in the world to utilize such a system as a Virtual Line. With patience and some feedback, which I gave plenty during the testing, Universal will lead the way in making an enjoyable park experience for anybody and everybody.

Volcano Bay, the first theme park with a complete virtual line experience. Opening May 25
Posted in News and Opinions, Out and About in Orlando, Overcoming Adversity

Love Trumps Hate in the Sunshine State

Mandy Ree at Lake Eola Park in Downtown Orlando. Sign reads “Women’s rights…it’s not an ovary action.”

In my typical anarchist fashion, I took the streets of Orlando (well, more of a jogging path) to rally aginst the many issues women and minorities face during Trump’s reign as president. A lot has happened within the first 24 hours that has added fuel to the fire, amumg them several government sites regarding the White House’s take on minorities, disability rights, and the LGBT community being taken down and replaced by Trump’s agenda, leaving us out in the cold. 

The rally took place inside Lake Eola Park, which showcased stories from local speakers involved in the local political scene. Many of the addresses touched on topics of racism, sexism, right to healthcare via Planned Parenthood, islamophobia, LGBT rights, and many more. But what surprised me most was that the disability community was well-represented, thanks to these two wonderful ladies from the Florida Democratic Disability Caucus and the National Federation of the Blind. 

Check out their awesome speech here.

Needless to say, it was a surreal feeling seeing the community come together as one. Men, women, and children of all races, ages, abilities, and orientations came out today on the lake to raise their voices and take action against an already hate-filled cabinet. 

Please enjoy some of my favorite pictures from the Rally below. 

Posted in News and Opinions, Overcoming Adversity

What Defines Hate?

When one talks about a hate crime, what does one think of? Does your mind go to race, as in the whole #Blacklivesmatter movement with white cops going over the top on their right to draw their weapons? What about the Pulse shooting where a man killed a mostly LGBT crowd of people in a murder suicide due to his ISIS like beliefs? 

Both are considered a hate crime. 

But has anyone ever thought for a God damn minute that bullying and abusing those with special needs can fall under that umbrella too?

Apparently, not many see that as a probable case. Take the most recent story about a group of black teens who tortured a special needs man and documented it on Facebook Live. Every article so far is so hyper focused on the racial aspect of the story since the teens were caught on tape using racial slurs against whites and anti-Trump references, that the very thought of this being related to the victim’s mental capability is forgotten. 

The judge and the police commissioner seem to tip toe around the idea that a hate crime can be ableist based. Multiple news sources claim the police never confirmed or denied the idea of a hate crime being committed, much less it being based on taking advantage of this young man and his disabilities.

Ummm…..HELLO?

It’s quite obvious these teens took the chance on befriending the man in an attempt to use and abuse him. While we don’t know the reasons why, considering there are reports of the teens trying to get something out of the victim’s family, it is still relevant that the man and his disabilities made him an easy target.

So many questions have been raised about this that I would love to see answers to. Why did the man’s mother allow him to hang out with sketchy people like this? Why does it seem like the community dismissed their crimes as “just kids being kids” when they are all of legal age, one being a 24 year old…a 24 YEAR OLD? 

The most laughable moment is the grandmother trying to come to the defense of her grandaughter, saying that “she was such a good kid” and that “she would never raise her that way.” 

Well guess what, grams? Somewhere along the lines, you effed up. Never did your granddaughter learn compassion, nor did you keep tabs on her as she grew up. You led her to this by your own ignorance. And to me, that’s a crying shame. 

What I find ironic is in cases like this, the ones who cause the crimes are celebrated as victims due to their enviroment, one where kids don’t have daddies and live off the welfare system, apparently never taught that they can end the cycle and go on to different things and be successful. While that may be the case for some, it shouldn’t be used as a crutch for ignorance to be acceptable. You control your own destiny. And if committing crime for your 15 minutes on Facebook Live is your idea of being famous and successful, then it makes me wonder who exactly in this story should be classified as “special needs.”

This man has suffered an unbelievable two days held hostage that could very well ruin his life and well being completely. Those two days of hell will forever live on in his memory, his trust lost, his emotions forever screwed up. I have seen things like this happen to many with disabilties, myself and Bill included, and let me tell you, that pain will never go away. You can bleach the blood stains away and cover it up, but it’s still there. 

As a victim of hate crimes growing up, this isn’t OK. To make light of it as kids goofing off or bullying, that my friends is a crime in itself. There is a difference between bullying and what was done to this young man…actually, come to think of it, there really isn’t. 

I pray these teens will be held accountable for their actions. They chose the wrong path out of hate, now that must face the consequences. There is no room in society for a hateful heart. 

If only the media and the numbnuts taking over this case could see what I see.