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 Relationship Ramblings, The Billy Blogs

Learning to Love Again

It’s been a few months since Bill walked…or should I say rolled…out of my life, and although I should be over it by now, the honest truth is that I’m really not. I have been so emotionally invested for the last decade, and most recently the last two years, that I feel like at times, I haven’t given others a chance.

While dating Bill, I landed in  some tough times that have resulted in RJ coming to my rescue, at one point, taking partial residence in my apartment, only going back to his for mail checks and doctor’s appointments since his apartment is closer to there. He has helped me through my darkest moments, and yet I was so focused on Bill and his needs. When Bill would “ghost” me for weeks due to a new video game or whatever, RJ would bring up a fun conversation and keep me from feeling bored. When Bill would forget my birthday or whatever holiday that was coming up, RJ would drop off a little something to help me celebrate.

I kept saying to myself that Bill “didn’t know better” or that his payee who held his money ransom was just “being a bitch” until it was later revealed that he was more into himself and his games to not care about me. And when you added his  “not my girlfriend” into the mix, the only logical answer would of been to leave him and go with RJ.

Logic? What the hell is that? 

Over the last few weeks, RJ and I have been toying around with the idea that we should try to pick up where we left off, especially since most of what ruined us in the past has been resolved. He found work, he is more respectful, and he has taken initiative even when I was tied up in other things. 

It hurts me lately that even though he loves me, I don’t believe in it. Between our past and me losing Bill, I’m afraid to love again. I call him my boyfriend, but I don’t have that sense of pride that I should when saying it. 

I look back at the weeks that followed me landing the new job and can’t help but feel guilt upon staying here over moving in with Bill. But the question remains “would I have been happy there? Or am I better off here?”

Would I have reconnected with the art scene to some degree on my own?

Would I have ever found all the cool things to do in Orlando without limiting myself to my “bus bubble” (I always feel paranoid getting lost.)

Would I have the freedom to do what I want when I want it?

Would I have taken the chances to grow and be a better person without a fear of abandonment?

I most likely wouldn’t of found that in Rhode Island…or elsewhere.

While Bill told me it wasn’t worth me keeping this job, RJ was in my corner, cheering me on, telling me that he was proud of me. Words Bill used to say to me way back when. Back when his heart was in the right place and not stuck in a gaming console, or a random lady friend.

Sometimes, I wish I never took RJ for granted like I do. I wish I can find a way to love him again like the way he loves me.

Needless to say I am angry at myself for being angry at him for reasons unknown. My emotions are so off kilter on this matter, that I wonder if I can even learn to love again in general. 

I wish I can see what RJ sees in me, since I’m just a mess of a human being. Whatever the reason may be, I’m thankful he hasn’t let go.

If only I can learn to hang on. 

Posted in Overcoming Adversity, The Billy Blogs

Dear Billy, (Three Months Post Break Up)

Dear Billy,

I wanted to check in and let you know how things are going lately. I’m sure beyond that tough facade of yours, you’re most likely wondering about what is going on with me. Believe me, I’ve been thinking the same way as you are. 

When I finally got closure from you last month, I was finally able to move forward with my life, although doing so meant burning a lot of the stuff you gave me. Surprisingly I don’t have any regrets, but I sure do miss Sunshine Bear. I guess you could jokingly say I’m horrible bear parent, but I digress. I was angry at the way things worked out with us, and as much as I tried to make things work, I guess it just wasn’t meant to be. Yeah, I spent weeks crying myself to sleep over this to the point where I had nothing to cry about. Although you’re too manly to admit it, I have seen you break down before and I worry about you doing so again. You have always had such a strong will about yourself and I hate to see that will be broken.

Anyway life so far has been hard, but I’m getting back to the way things used to be with my career. Work picked up at the survey place because of pilot season, meaning all the new TV shows are out and ready for previews. There are some pretty awesome shows coming out. I recommend you watch the show “Rise” since it’s very much like “Glee: and it also chronicles the story of a teacher I know for my hometown. The character named Lou is actually based on a real person. Pretty cool, huh?

I have been working on my training as a vacation planner at the new park, that job that basically ruined our relationship and prevented me from moving in with you. Although I lost you, I have finally gained confidence knowing I can return to my roots as a vacation planner and be something with my life again. My bosses are really nice and let me use my magnifier without any hassles. The people I met so far are really nice. Everything about this place has been nothing but wonderful to me. It may have seemed like a gamble, but so far I’m winning. 

You should see this place, Bill. It is as if you stepped into Hawaii. There’s a big giant volcano that’s also an aqua coaster, there are two lazy rivers, about 13 slides, a wave pool, and a water splash area. I know you’re probably thinking that none of these rides would be accessible to you, but a good majority of them are. They have elevators that take you to the top for some of the slides, a lot of the pools are Zero Entry, meaning you could take your wheelchair in for a little bit and dangle your toes, and some of the pools have little chairs that will drop you in so you could transfer in and out of your wheelchair easily. Even the kids play area is handicapped accessible. There are basically no limits to what you can do here. My God, you would love this place! Hopefully one day, you’ll be able to come and visit me.

Everything else in my life is going okay. Me and RJ are still good friends and are kind of debating whether or not we want to go back with each other, but for the foreseeable future, it doesn’t look like it’s happening. But I’m far from crushed about it. We are perfectly good as friends.

Working both jobs has been keeping me busy and my mind occupied. Every once in awhile when something new happens, I so want to call you and tell you about my day, but since you’ve basically written me out of your life, I know the odds of you answering are slim. 

I have been on a lot of adventures lately aside from work. I got to shoot real life zombies at RJ’s work, explore an insanely huge McDonald’s, help in the production of a Jimmy Fallon skit, attend both a Blake Shelton and a Flo Rida concert in the same week, go to Spooky Empire, and babysit Amanda’s cat. I have so many stories to tell, and not enough time to jot them down. 

Although I try not to, I still think about you a lot. I wonder how you’re doing through all this, how your bowling league is going, all the cool trips you made with Shayna, even what’s going on with your job. So many questions, I’m pretty sure I won’t get the answers to. But nevertheless I hope everything goes well with you and you are living a wonderful life that’s far from boring.

Just be sure to know that even though things went bad between us, I still consider you as a mentor and great friend of mine. That love I had for you will never die, even though now it seems like it. You have been a major part in my life and I will forever be grateful for the time we were able to spend with each other the last year. I’m hoping sometime down the line we will cross paths again, but only when you’re ready. I know I can’t make you change your mind,  that is all on you. But rest assured when time comes and you are ready to talk to me, I will be here for you.

Never stop being the amazing fun person you are. Keep being the amazing self-advocate who never stops fighting for their dreams. Whatever life takes you, know that you can handle anything that comes your way. I want you to be happy, and never to be sad. 

I’m always a phone call away if you need me. 

Love you still, always will.


PS- Enjoy this picture of me hanging out with a Zombie at Spooky Empire last weekend. Don’t worry, he isn’t real. 

Posted in Lights, Camera, Universal!, Overcoming Adversity, Pondering about PTSD, The Billy Blogs

Mandy’s Inferno

“Remind me that the most fertile lands were built by the fires of volcanoes.”

-Andrea Gibson

I spent most of my writing and blogging career chronicling the trials and tribulations of me and Bill, star crossed lovers from age, disability, and location standpoints. I told our stories, both good and bad, in hopes that one day, we could of paved the way for other disabled folks to get married and live that fairy tale life.

But as of last month, I feel like a fraud.

I had a few really bad months under my belt due to job loss and financial hardship, having my friend RJ help me out in exchange for a place to stay on nights he would work late. Not a choice I wanted to make, but it was that or risk homelessness.

Of course, Bill was never able financially to help me, only to be my cheerleader in my time of great crisis. His disabilities meant he wouldn’t be able to move down to Florida for me, and he encouraged me to move in with him.

As magical as it would of been to be with the one I love, I couldn’t do it. The idea of living off benefits and having the potential of being cared for by staff, although ideal, would of been the death of me. It was a life he knew all too well, and the only life he has known, but for me, it wasn’t enough unless it was a last resort before moving back in with mom and dad.

I wrote about us constantly, and now without him, I feel lost. For every share of an old story, I feel like a liar. For the presenting I have done and will be doing, I feel like life with him was just a figment of my imagination, a folk tale as big as Paul Bunyan and Babe the Blue Ox.

Without him, life erupted, and everything I thought we had was destroyed.

I often wondered what he must be going through right now, how hurt he must be, or if he even misses me. Or am I just that annoying phone call in the middle of a Titanfall marathon? Who knows?

A friend from my Disney Days now works as a staff person for a house up north not too far from Bill, and she was able to update me on what’s going on.

Apparently to Bill, I “cheated on him with RJ,” a far cry from the truth since RJ knows I’m still head over heels for the guy and wants me to figure things out on my own.

No matter what I do for Bill, whether it be an email, text, Skype, or voicemail, it just doesn’t seem like enough to convince him to forgive me, or at least give me the closure I need so I can focus on other things.

It makes me look like the bad guy. It also makes me feel like one too.

As Mardi Gras season comes to a close tomorrow for me, the anxiety of going to a whole new park grows more and more each day. Watching that Volcano manifest from the side of the highway gives me both comfort and sadness, fear that I did this whole thing for my own gain and not his, and joy that I will finally be able to get my life back together again.

Volcano Bay from the highway.

If only Bill could give me that one chance to prove that this was all worth it and forgive me. If only he could be proud of me and not ashamed. If only he knew the amount of courage it takes to keep going amongst all the hardships I outnumbered the last few months. If only he could understand.

But the question remains, does he understand? Is he able to? Or are my pleas for his acceptance just falling into the lava?

If only I could find that acceptance in myself as this new journey beckons instead of relying on him. I want to be excited for this new opportunity, but I feel already burned out.Not that the job is bad or anything of the sort, but for everything else going on in my life.

I guess it’s me versus the Volcano. Let the battle for acceptance begin.

Posted in Overcoming Adversity, Pondering about PTSD, Relationship Ramblings, The Billy Blogs

Finding (Self) Forgiveness 

Usually, we find it difficult to control our mind. It seems as if our mind is like a balloon in the wind – blown here and there by external circumstances.
                    -Kelsang Gyatso

I have been struggling a lot lately with forgiveness, mostly due to losing Bill and trying to patch up whatever friendship we have left. Losing him has been the ultimate nightmare of mine. Like a balloon, I feel free, but yet I feel lost in the wind, wanting so desperately to be tied down.

Forgiveness has been a hard concept for me to grasp.Trust has always been something I have had issues with since I have dealt with some bad people in my life who would take advantage of my kindness, only for me to be tossed to the curb in the end. How can I forgive others if they hurt me? I am the queen of holding grudges, you do me wrong, ain’t no turning back. 

Bill has fallen through the cracks in the situation, which has tested my patience as well as my self worth. In a normal relationship, he would be the last thing on my mind. But we were never classified as normal in any aspect of being together. Disability was never a “get out of jail free” card for him, but what is?

Maybe it is my attitude that caused all this, expecting way more than what he could deliver. Expecting higher standards for myself while forgetting I am allowed to make my choices and not be punished for it. Why should I go through a second party for approval? 

Because it’s Bill and I have no freaking clue why.

I want to forgive him for the situation with his little friend as well as my choice to take this new job because me being the egotistical whacko I am, I never thought once about his feelings in all this.

But are his feelings worth changing my whole life around? Where do I draw the line in all this?

What if the person I need to forgive is myself? 

Silly concept, but it’s much needed, given the new park is opening soon and my training is mere weeks away. I want to be positively focused on something that could make my life better. I made the choices I did to propel myself forward. I shouldn’t feel guilty for making that decision, even if I broke his heart. 

The guilt has resulted in a few bad nights of sleep, weird dreams that just don’t make any sense, and a desire to cuss people out just because I can. Never have I felt so irritable in my life. Most of this anger is brought upon myself since it was me who decided to end it on impulse, who had issues with his lady friend, who picked up a job away from him. I’m the one who did all this. Me.

I want to forgive myself for the choices I made, looking at the bigger picture has shown me the way to a better future for myself. I hope in due time, he will be proud of me for doing this and will forgive me. Knowing Bill, he can be really stubborn. Like a brick wall, he’s tough to break. Let’s just say it’s going to be a while, if anything, for him to open up again.

But I can’t wait for that to happen. Time is precious especially in transition like I’m in now. Somehow I need to find that in myself. My fate depends on it.

Things can only go up from here, right?

Posted in Cast Member Chronicles, Lights, Camera, Universal!, Overcoming Adversity, The Billy Blogs

Why I Didn’t Give In To The System…or Him

My biggest critic turned out to be the person I devoted my whole life to. And because of a tough choice I made in finding a stable career, I lost him.

After about a decade of trying to make things work between us, me and Bill decided to part ways. There was more involved than what I want to share, but the gist is that I decided to fight the odds against me and work hard to make my life one where I don’t have to settle for less.

Back in August, I lost my job with Disney, and with my fate being undetermined with Universal for the longest time with me not finding anything beyond seasonal or temp work, all signs pointed to me moving in to Bill’s supportive living community in a last ditch effort to not resort to moving back in with my parents, a fate many of my friends with disabilities, and some without, have faced.

To Bill, this meant we could live out our lives where he would be taken care of and have me at the same time. And as magical as it would of been to be with the person I loved, it would of torn me apart inside.

Although being born with the challenges I have faced, my family made every single attempt to raise me as if I were a normal child. My dad, being the conservative kind of guy he is, always told me to work for my goals and not ask for a handout. Even my mother worked every single job she could find so we could move out of living in poverty and be happy, ever since I could remember. I wanted to be like my parents and fight for what I wanted even if the odds are stacked against me. I saw them grow from minimum wage retail workers to being a corrections officer and a teaching assistant. If they could do it, so can I.

Bill, on the other hand, had different plans for me, and although they seemed wonderful, they weren’t for me. His idea of a perfect life involved having me and him move in together, live off the system and food stamps, and essentially have no control over my money while his staff take care of our bills, our meals, everything.

As cushy as that sounds, I didn’t buy into it.

Now I’m not trashing that lifestyle by any means, but what he was used to given his disability and what I was used to as a person who got denied for most government benefits just never added up to me. Where would I have fit in in all of this? What purpose would I have aside from being a live-in girlfriend? So many questions, not enough answers.

A few weeks ago I got the news that I was able to transfer into Universal’s newest theme park, going back to my roots as a vacation planner and finally having stable employment. Bill judged me for making the choice of career over him, and who can’t blame him?

I worked hard for last eight months to prove myself worthy of getting back in the workforce, and sadly, it came at a price of losing the person I love the most.

Whether I lost him for good or not remains uncertain, but my love for him will never die even though things didn’t work out the way he planned. I can only hope one day he will forgive me for making the hardest choice I’ve ever had to make.

Nevertheless, I persisted. Having the disabilities I have will never stop me from living my dreams. 

If only he could see that this decision is worthwhile.

Here goes nothing.

Me in one of my many uniforms, this is my resting Market Research face for the NBC Media Center
Posted in Relationship Ramblings, The Billy Blogs

The Rebound Effect

It seems to me that I always tend to fall into this rut upon leaving a relationship where I tend to go back to an ex after shit hits the fan. Most of my adult life circulated around Billy and RJ. And I honestly don’t know why.

Both men, although they had their annoying quirks and baggage attached to them, being troubled pasts or caregiving issues, were my most successful relationships. With Bill, it was one where we defied all odds like some sort of fairy tale, while RJ brought me a sense of adventure in our three states worth of living together. Bill originally brrought on the romance up until I left Rhode Island, while RJ, let’s just say, brought on the rest…winky face.

I’ve had other men in my life since my college days, and a few Tinder hook ups that never made it past meeting in person. I know my options aren’t limited, but why do I insist on bouncing back between the two?

Honestly, I don’t know. 

I think it has something to do with the way both men treated me in various points of my life, how their impacts have made me the woman I am today. Bill brought out my self advocacy skills and having me admit my disability, while RJ embraced my inner nerd and helped me take risks and be adventurous. I just don’t want to lose that feeling they both have given me. That feeling to be myself. Kind of odd I feel like I need them to continue that.

If only there was some way to find that feeling in myself again. With Bill still undecided as to the extent of our relationship or friendship and RJ and I not willing to take that step to go back to the way things were, I need to find that sense of self worth again without them. 

Only question is, how? How does one find worth when life has given them a bad hand? After countless men turned me away, there must be something wrong with me, whether it is disability, looks, or God knows what. What did these two men see in me that I don’t? Or am I some sort of weirdo magnet? What value did they find in me to put up with my bullshit for so long?

Guess I’ll have to find that out myself.