Florida SAND Fellowship Year One: A Review of How My Advocacy Has Benefited From My Fellowship

Hello again everyone. I hope everyone enjoyed yesterday’s blog on adaptive cooking and cookware. As my fellowship is coming to the end of the contract for my first year tomorrow, I felt it would be appropriate to give a nod to not only Florida SAND but my colleagues and the staff who trained us throughout this past year to thank them for helping my passion for advocacy grow. 

I came into this fellowship at a weird time in my life. Before the fellowship, I had worked for Florida SAND as a per diem writer for their blog FSA Central. While this work kept the flame for disability advocacy alive and on life support, when I was presented with the opportunity to be a fellow, I immediately jumped at it. Thank you to Kelli Munn for the opportunity.  I would not be where I am today without your faith in me. However, my fellowship wasn’t as smooth of a journey as I had hoped. 

About a month into the fellowship, I began to take it for granted. I had an ego bigger than the state of Florida and I thought that I knew everything there was to know about self-advocacy; boy was I wrong! I quickly learned that there was more to this fellowship than just writing articles about people with disabilities. Thanks to the fellowship I would develop event planning skills and meet my best friend, although I did not know it at the time.  We spent the first few months of the fellowship planning a conference where we would teach a concept that I have spoken about before on this blog, “The Route To Self Determination”. At the time I did not realize how this conference would change my life forever. Along with my colleagues, Laura Lee-Minutello and Samantha Lebron we had to give a full-day presentation on the concepts of Route. It was both an eye-opening experience as well as a learning opportunity and as I’ve said before, it was where I dared to hit Samantha with the following cheesy line that would change my life forever.  

Hey, “would you be my scribe for the weekend?”. I don’t know why the hell she said yes but she did. I will not go into further detail about how we have built a relationship in this blog as it is not relevant to my main point. After that weekend I started to see that my passion for disability advocacy was not as strong as others were. Over the next six or seven months it would decline and eventually, in an unforeseen way, it would reach an all-time low. The fellowship quickly became something I took for granted. 

I was given so many opportunities to better the lives of other self-advocates but unfortunately, I did not take advantage of them. Granted, I spent some time dealing with health issues but I did not use my hospital stay to re-energize, instead, I would use it in a negative way and sadly become complacent. However, that all changed a few weeks ago. 

About four months ago we started planning this year’s conference where we would give a condensed version of the presentation we had given the year before. I tried to use this to remotivate myself but it wasn’t until I attended the conference and heard its keynote speaker Matthew Walzer that my attitude changed in a positive direction. Without retelling Matthew’s story, as I have mentioned in previous blogs, I will say that his speech changed my life and my overall outlook on not only my fellowship but my life in general. 

I now understand how things happen for a reason but at the same time, we cannot use negative events in our lives as excuses or crutches to explain away our laziness or lack of effort. Thanks to the fellowship and the speech I heard at the second conference, it became a part of my advocacy work and my enthusiasm has intensified one thousand percent. I now post on The Voiceless Minority anywhere from four to five times a week. This is significant because excluding the first two years in which I started the blog, I only posted on it sporadically. 

As a final thought, just because you start to feel overwhelmed or negative about a particular job or situation you are in, remember that you are the only one who can change the way you feel. Recently I wrote a blog on how attitude is altitude, and it is this principle that is most appropriate to end this blog. In other words, just because there was a period in time where I had negative feelings toward the program, this does not mean that I could not have chosen to deal with them positively.  Negativity is only a feeling; it is only as powerful as we allow it to be. Instead of letting the quality of my work show how I was feeling at the time, I believe God was testing me and unfortunately, I did not pass his test. But you learn from your mistakes and learned I have. 

Whatever you are facing, there is always a way to put a positive spin on it so that you come out of a situation better than before you encountered it. This writer’s humble opinion. Until tomorrow, stay strong. 

Jay

Thirty Years Gone but Not Forgotten; A Letter to My Pop-Pop, My First Best Friend

This Christmas will mark thirty years since the passing of my mom’s dad, or the person I like to call my Pop-Pop. To be quite honest I've been lost in my thoughts for a few days now.

Late last year I was presented with the opportunity to become a Florida SAND Fellow. The Florida SAND fellowship has allowed me not only to continue my writing which I have been neglecting for the last couple of years but equally as important, it has allowed me to strengthen my advocacy skills. There have been ups and downs throughout my fellowship but as they say, things happen when they are supposed to. As a result of my fellowship, I finally found the best friend I have been searching for my entire life. Nearly ten months ago on a dare from my caregiver, I approached my now girlfriend Samantha Lebron and started a conversation. I did not know it at the time, but God put me right where I needed to be. 

For the longest time, I held a belief that I could never date someone in a wheelchair because of the childish assumption that our physical limitations would get in the way. Boy was I wrong! I now have not only found someone who I can bounce ideas off of, but my little blue-haired alien is just as quirky and nerdy as me. I never thought my dreams of traveling the world, starting a family, or exploring what it means to have a disability on a deep level would be shared by anyone. Recently during a conversation with my dad, my feelings were affirmed when he said something to the effect that he and my mom have seen a great deal of maturity and growth in me since I started dating Samantha. He also shared that Samantha was God’s answer to his prayers. Before Samantha, he was unsure if I would ever find a true best friend not simply because of my disability but more so because of my lack of self-confidence and maturity. As much as I argue and fight with your dad, you couldn’t be more right, you hit the nail on the head. Thank you for your kind words and vote of confidence; it means the world to me. 

The concerns that my dad brought up in our conversation about my newfound maturity have bothered me for the longest time. I too never thought I would experience some of the things I have. Along with this thought, I have also often questioned whether or not I am a person that my grandfather would be proud of. I looked up to him like no one else. He was my first hero. He never saw my disability as something that made me different. He always treated me as if I was his best friend. I feel that on some level I have let him down. I have not always been the person that I am today. I can say that until recently I did not like who I was. I was one of the most negative people I knew, on the inside anyway. I have always been good at putting on a brave face and happy demeanor for my friends and family, but I have never been proud of who I am. All that changed quite suddenly. 

As I was going for a roll the other day, it hit me for the first time that this year is the 30th anniversary of my grandfather’s death. As I started to cry and feel sorry for myself, a negative thought crossed my mind. I felt as if evil forces in the universe were reinforcing the idea that I indeed was a disappointment to him. As if in response to my thoughts, it suddenly started to lightly rain. Immediately I stopped crying and a broad smile came across my face. I realized that the rain was my grandfather sending his love from heaven to reassure me that I am indeed on the right path and not a disappointment after all. 

Thank you, Pop-Pop, you have always been there when I needed you even if I didn’t know it. Although you are not here with me you will forever remain in my heart. I love and miss you every day. 

Jay

Setting Boundaries; How Do You Know the Difference Between Someone Being Friendly and Genuine Friendship When You Have a Disability?

It has been a few months since my last blog. However, with it being a new year, what better time than now to hit the ground running with a new sense of purpose and passion? It has always fascinated me how humans can become so disenchanted with life that we reach extremely dark places. To be honest, that’s where I have been the last few months, although it may not seem that way to outsiders. Depression rears its head in the most positive and happy people. You may ask what do I have to be depressed about? To answer without unloading every single problem I face, let’s just say there are quite a few things about my life that would depress most people. How you overcome the difficult times you face defines you as a person. We often require the help and advice of our friends, colleagues, and family to reach the other side of that “dark place.” Lucky for me, I have an amazing group of people that make up the support team that helps me navigate through my “dark place.”

Recently, I was having a conversation with one of those people when she brought up a topic that I believe does not get discussed the way it should be in the disability community. Although oftentimes, we have to remind others disabled people are just like everyone else. For the purpose of this article/blog, I am not referring to the differences our disabilities present physically or, in some cases cognitively, rather I am simply referring to the idea that, like the rest of humanity, disabled people want and deserve to experience the joy and happiness that come with genuine friendship. Bearing this in mind, I will use the rest of this piece to rather provocatively argue that although disabled people may not mean to, sometimes, in our pursuit of genuine friendship, we shoot ourselves in the proverbial foot. Don’t agree? You have the right to feel that way, but if you indulge me, here are a few examples to support my assertion.

I use personal care services to perform my everyday ADLs. This means I am with a caregiver in a one-on-one situation most of the time. The caregivers do mostly everything for me. They help me in the restroom, and until recently, they help me eat all the time. (I now occasionally, depending on what I am eating, will use adaptive utensils,) as well as many other activities throughout the day. Naturally, when people spend so much time together, they will become close on some level. What I believe happens to people with disabilities is that they believe that every caregiver they have will be a friend for life. Now I am not saying that caregivers don’t fall into that category by any means. I myself have a handful of caregivers that either work for me now or have worked for me in the past that I consider “genuine friends.” I am simply arguing that because our desire to make friends is so strong that sometimes we mistake someone’s being friendly forNeeds when you read it again, some time will friendship. Sometimes we’ll forget that boundaries must be established between us and our PCA. You must remember that it is incredibly rare in life to have true friends, either in a professional setting or otherwise. The few true friendships we are lucky enough to develop throughout life must be cherished and treated as special. Regarding people with disabilities, we must set boundaries with our PCAS and realize that most of them will not become lifelong friends.

There is yet another area where people with disabilities sometimes forget about the rarity of true friendship. I believe because a large portion of people with disabilities did not grow up with the same social opportunities as our able-bodied counterparts, it is hard for us to navigate the social structure of society. We often get so attached to people that we do not realize it is natural for people to come in and out of our life. That being said, it is unfair for us as people with disabilities to expect every friend we make to talk to us regularly. I have had to learn this the hard way. I now understand that life happens. Just because you don’t talk to someone regularly does not mean they don’t care for you.

In closing, I would like to say that the views expressed in this blog are my own. They may or may not reflect the views of other individuals with disabilities. As a final thought, I know that I have grown a lot, but I also know that to fully grow as a person, my journey will never stop.

Until next time…

Jason

Definition of Terms

1. ADLs-Activities of Daily living

2. PCA (Personal Care Assistant)

Hey! Down here!

So, it's been nearly a week since the last time I posted here.  This is not to say that there haven't been things bubbling around in my mind, just that I've been a little busy.  Since the last time I wrote, I've been busy promoting the blog by creating a Facebook page.  You can now show your support for the blog and disability advocacy in general by visiting The Voiceless Minority on Facebook.  I've also been busy continuing to write my first full-length screenplay.  Now, however, it is time to get back to the meat of things. 

       I've written extensively about several different issues, including how disabled people desire to be treated equally but still use the "Disney World" principle, as I like to call it, cut lines, etc.  While I've said that, in most cases, disabled people do want equality and strive for it legitimately, it does not mean that they are always supported in their efforts.  I've also written about social acceptance and disability.  However, this past week, this issue has come up twice.  The issue has not arisen in my personal life, but I've had friends and acquaintances mention it.  Therefore, I thought I would write this blog. But I would take a different approach. 

       I have mentioned that legislation cannot legislate acceptance, and while I know that this is not my view alone, a young woman powerfully drove this point home in a poem. Sarah Smith is a young woman who has the same disability that I do, cerebral palsy.  I first met Sarah several years ago.  We both attended the same university.  I am not going to mince words. Sarah and I haven't always gotten along. Still, we've grown to respect one another because of our drive and determination to prove that, although we have obstacles that society calls disabilities, these obstacles do not define us.  What follows is the poem that this driven young woman has written.  It is used here with her permission.  Thank you, Sarah.

 

"I was born too early

small, fragile, and weak

they thought I would not survive.

But along with my will to live,

another token was bestowed upon me;

one that I didn't want to ask for or need.

 

"What is this token," you ask?

Well, the answer is quite simple.

For it is a cloak

of invisibility.

 

I carry it with me

throughout my life.

It was given to me by society

and shallow close-minded souls,

who believe my disability

defines me.

 

They walk right past me,

never bothering getting to know

the person beneath.

Or worse yet,

they pretend they care,

but really,

I'm just a pit stop,

until something better comes along.

 

To those cowardly people,

I say, "your loss."

You are missing out

on meeting someone

who is loyal, honest, and loving

through and through.

 

For those who have taken the time

to look beneath the label,

thank you

for giving me a chance

to live and love

undefined and free."

 

 

 

       Being nonobjective for a second, I must say that I love the poem.  I may not agree with everything that Sarah has ever said, but I was stopped dead in my Facebook clicking when I read this.  Back to objectivity now, if one indeed looks at Sarah's words, they cannot help but be struck by them.  Sarah brings to light a well overdue point.  Not only are disabled people often brushed aside like second or even third-class citizens, but they are also often unwantedly pitied and patronized.  We, as a group, is either exalted as heroes or we are wallflowers.  People rarely take the time to know us as people; instead, they get to see the machine or device with the person in it. They do not see, as Sarah says, a person who is loving, honest, and loyal, instead they see someone to feel bad for or to judge.  Sadly, this not only occurs in the general public, and the realm of academia, but it often occurs in social settings.  By this, I mean, we are not only looked down on by waiters in restaurants who glance at our companion to give our order, and professors when we reach the higher levels of education, but mainly we are looked down on by our peers.

       Now, when it comes to social invisibility, I refer to two ideas.  One is that we are not perceived to be capable or worthy of being in a romantic relationship.  While this idea is most infuriating to me, being in my late twenties and being human, I do feel that this is secondary to the second idea.  It is even more frustrating when our peers brush off our intellect in regular conversation and everyday interaction, and they brush off our ability to behave like them.  How often I hear the words, "You like to do that, you're disabled," or "But you're in a wheelchair," or "That's weird, I wasn't expecting you to act like that." It is almost like we are visible and invisible at the same time.  Well, it is time that the disabled community, as a whole, is recognized for who we are as people, and not just for the disabilities that we have to overcome.