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

AN AMERICAN CITIZEN CHASING THE AMERICAN DREAM.

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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 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.

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 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.