Lego Strives To Make Play Accessible for All: Braille Legos Soon To Be Available In The U.S

Mostly everyone, regardless of their age, is familiar with Legos. Some were obsessed with them as a child, owning every kit and every expansion set; however, some may be unfamiliar with what exactly a Lego is. According to their website, Legos are a series of interlocking plastic blocks that can be assembled to form buildings, characters, vehicles, and other objects.

 

The Lego company was founded by Ole Kirk Christiansen in 1949. Since Lego’s founding, the company has always been at the forefront of the latest trends, whether it’s a hit movie, TV show, or, more recently, the concept of inclusion and universal design.

 Words

You may ask, what is universal design? According to the University of Washington, universal design is the process of creating products accessible to people with a wide range of abilities, disabilities, and other characteristics. Now that we understand the universal design (UD) concept, we can apply it to a new product that the Lego company unveiled in the U.S. on September 1^st of this year. The new innovative product is a Braille Lego Kit. Once it hits the market this Friday, it will bring the world of Legos and basic education to children with visual impairments.

 

The Braille Legos are not a new concept. They are just new to the U.S. market. The idea was first introduced in the U.K. in 2020. The idea behind the UK products was to make them available in educational settings only. The original kits came with 300 pieces with markings corresponding to each Braille alphabet letter. These blocks were originally designed for children between the ages of one and four. However, the researchers quickly saw the product's potential with other groups.

 

After three years of perfecting the product, the Lego Braille blocks will officially go on sale in the US tomorrow. They will retail for approximately $89. This time, the kits will include 226 pieces with the Braille markings on one side and the English equivalent of either a letter or number on the other side so that those who are assisting can easily use the product.

 

In closing, there is no doubt that the steps the Lego company has taken to include a segment of the disability community should be commended. However, although this blog focused on individuals who either have low vision or are blind, I make it my mission to research whether there are other adaptive toys for other segments of the disability community. If anyone reading this can point me in the right direction, I ask that you either leave a comment on this blog with your contact information or email me at jasonhahr@gmail.com. Let’s all use the fourth principle of self-determination, which is responsibility, and remember that we all should give back whenever we can.

 

Thank you for reading this post. I hope you enjoyed it, along with the other recent posts on this blog. Don’t forget to come back tomorrow for a more comprehensive explanation of self-determination.

 

Your friendly neighborhood super advocate

 

Jay

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

Finding Your Way Around The Kitchen: How Adaptive Utensils Make Cooking Accessible For All

Before I begin, I wanted to say thank you for your overwhelming support of my recent posts. I hope you enjoyed yesterday’s blog on how to have a healthy relationship. Now let’s take a detour and begin today’s post. 

The first thing I want to say is, Happy Taco Tuesday everyone! If you have not guessed this blog is going to be about food and how people with disabilities can be included in one of America’s favorite hobbies, the art of homemade cooking. I know everyone except the really brainy people, the ones who majored in math in college, and hated statistics but here comes one anyway.

According to a poll conducted on behalf of Hello Fresh nearly one-third of Americans still believe it is better to eat in than go out because the quality of food is better. In that same poll, it was reported that 69% of Americans cook on a regular basis, an estimated 10 meals per week. 

Some of you who are reading this may question the validity of this poll and may be wondering what exactly is Hello Fresh. According to their website, Hello Fresh is a meal-kit delivery service with four basic plans depending on your dietary and food preferences. 

If we consider the Hello Fresh poll to be accurate or close to it, then we can logically come to the conclusion that cooking is a highly enjoyable pastime in America. The question can be asked then, how do we make cooking accessible for all? 

Fear not, this blog will attempt to give you, the reader, tips and suggestions on how you can make any basic kitchen accessible for all. To begin, let’s look at why home appliances were created in the first place. I believe Appliance Journal puts it best, “Home appliances were designed to make our lives easier. The cool thing is appliances aren’t a one-size-fits-all all solution. Home appliances come in many different shapes and sizes, there’s something out there for everyone. Preparing meals from a wheelchair is possible with a wide selection of ADA-compliant appliances.” The article goes on to further explain that ADA-compliant kitchens are becoming more popular for three essential reasons. 

1. There has been a significant increase in multigenerational households.

2. People with disabilities are now aging in place rather than going to a facility or an institution. 

3. There has been an increase in the belief that society should be more inclusive for all.

An article written in 2021 by Hadriana Lowenkron reinforces the idea that universal design not only benefits people with disabilities but society as well. 

Let’s look more at the above-mentioned journal. The Appliance Journal has comprised a list of accessible kitchen items that I believe will benefit everyone. 

The first thing they discussed was the height of the kitchen counters. They pointed out that most kitchen counters are 36 inches. They then mentioned how a universally designed home or residence typically has 34 inch countertops. This is useful for somebody like myself because my wheelchair would be able to fit under the counter more easily. After talking about the height of counters the next logical discussion would be to talk about some accessible appliances.

Rather than just regurgitate what the article said about these appliances, I have linked an article here:

https://www.ajmadison.com/learn/appliances/buying-guide/the-best-wheelchair-accessible-kitchen-appliances/

Once you have made your kitchen accessible you can take the next step to make cooking accessible for all. Now we will focus on some adaptive cookware and utensils that may be useful in the actual cooking process. 

The cooking process is fun for most people and if you have a disability, it can be as well. In doing research for this blog, I not only learned about adaptive spoons and silverware as well as straws which I already know a little about, but I also learned about cool utensils such as self-opening kitchen shears ie, scissors for cutting food for when you are preparing it. There is a whole slew of utensils I found on the website below.

https://www.thewrightstuff.com/adapted-kitchen-aids.html. 

In closing, cooking is not only a way to stay healthy, but it can be very therapeutic and relaxing, and given the right equipment, people with disabilities can now cook just like, and dare I say it, sometimes even better than their able-bodied counterparts. 

Well, dinner is done so I am about to go enjoy some of my favorite food, as today is Taco Tuesday!

Your Friendly Neighborhood Super Advocate,

Jay

How To Have a Healthy and Long Lasting Relationship With Your Significant Other

Hello again, I hope that everyone who is reading this had a great weekend and enjoyed the posts from last week. 

On Friday, I wrote about privacy and setting boundaries when you have a disability. This post will examine boundaries also but this time from a different angle. In this piece, we will look at the idea that some people with disabilities tend to rarely find themselves in long-term relationships, because of their inexperience with romantic relationships sometimes they end up unknowingly losing themselves in the relationship and neglecting other parts of their life.  This piece will provide some helpful tips to ensure that any romantic relationship you have as well as the other relationships in your life are balanced.  

Anyone who either knows me or reads this blog regularly will be aware of the fact that I am now in a relationship with a little alien by the name of Samantha. What you may not know is Samantha is the first disabled person I have dated and my first long-term relationship since I was 18. My previous relationship lasted a few months so some might not even call it a long-term relationship. Either way, my relationship with Sam is the longest relationship I have had.  We have only been dating for a little over a year but it has been a wild ride in a very good way. I believe until recently we were still in the honeymoon phase, or at least I was.  This is not to say that we are still not learning about each other and growing together as a couple. 

For the first 13 months or so of our relationship, we would call each other every time we got a break in our day, and this was immensely enjoyable but for my part, it eventually turned into a routine rather than a vibrant conversation with someone I love where we had things to share with each other. That all changed after a conversation a couple months ago. 

One night instead of being nerds and reading the fourth Harry Potter which we have been doing for months…will we ever finish it? I’m hoping so but I will let you know when we do. Anyway, back to my point. One night the topic of our relationship came up. As I said on Friday, when you have people constantly around you, they observe certain things even if you do not know it or want them to. In our conversation, it came out that people in our lives were making comments about our relationship, and at the time I thought they were unfounded. However, looking back, maybe these comments were wiser than I realized. To summarize, many people said we both, but for the most part, I had changed. Upon hearing these comments, I immediately jumped the gun and reacted negatively. 

According to some, they felt that I was consumed with Sam. After taking a breath, Sam calmed me down. She made me realize that perhaps because I have not been in a long-term relationship I was going in full throttle, perhaps even a little too much. It’s funny how people closest to you give the best advice but they are the last ones we listen to. Anyway, as a result of that conversation Sam and I now talk once or twice a day so that we have something to talk about at the end of the day.

I found that our conversations were richer and not as forced as they were when we talked constantly. I am thankful for that. An added benefit of the change in communication style between the two of us is my personal growth. 

I am now developing better relationships with close friends, taking time for family and caregivers, and even getting back in touch with my spiritual side. I was raised Catholic but have drifted away from the Christian church, or for that matter, religion in general. Since I have been in a relationship with my alien, my faith has been reawakened, and I am slowly building upon it. For that, I must thank Sam. Even though I have been surrounded by religion my entire life, when you are forced or constantly reminded to find faith you quit looking for it but when faith finds you this is truly the way a relationship with God is supposed to develop. 

Along with my faith journey, since I have changed the communication style in my relationship, I have paid more attention to the opportunities life is providing me. Recently I have found a new passion for self-advocacy and as I mentioned last week, I have found my true purpose in life. On that topic, my sister pointed out to me that something I said in my blog post last Tuesday might have been misunderstood. 

In the blog, I wrote last Tuesday I mentioned it is my new passion to obtain a law degree in public policy and become a civil rights/public policy attorney. After talking to my sister, I realized that it may have sounded as if I was going to immediately pursue that goal and forget about everything else. The opposite is true. That is my end goal. For those who are curious to know I have a plan of action to get me to that eventual goal. In short, next March I intend to apply for a six-month program in which I will learn how to advocate for different legislative policies that affect people with disabilities in depth. Hopefully, this program will provide me with a foundation for my future goals.

In conclusion, in order to have a healthy fruitful, and most of all lasting relationship with a significant other I have learned that there is one key factor. This simply comes down to personal growth i.e.: having a life apart from your partner so that you can come together as a couple and enrich each other’s lives and grow together. 

I hope you have enjoyed this little bit of relationship advice from someone who is still learning. Having said that, please note the above blog and the advice given in it is just that. You don’t have to agree with what I said at all; if you do that’s great, if you don’t I respect that as well. Anyway, until tomorrow, I hope you have a good rest of the rest of your day.

Jay

When You Have a Disability, Is There Such a Thing As Privacy?

As humans, we crave interaction with others. Indeed. when we don’t have social interaction with other people, feelings of despair and loneliness can overwhelm us. However, in the age of social media have we gone too far? Every aspect of most people’s lives is available for consumption by others now. This may be a new concept to the majority of the world but for one segment of the population, I argue that a lack of privacy is not a new concept. Indeed, it may even be a bigger problem for people with disabilities than their able-bodied counterparts. 

Frequent readers of this blog know that I have a disability known as Cerebral Palsy. Cerebral Palsy, for my new readers, is a congenital disability that occurs at birth. It usually occurs during the delivery process; it is not genetic or at least there is no evidence that it is as of yet. There are many forms of Cerebral Palsy and it can affect people in a variety of ways. Some people with Cerebral Palsy have a slight limp when walking, others use a wheelchair for some things but are semi-self-sufficient. Finally, there are severe cases like mine, where the individual is confined to a wheelchair and requires physical assistance for most activities of daily living (ADLs). Cerebral Palsy does not only affect people physically. Indeed some, unlike myself are intellectually impaired. This is not to say those who are intellectually impaired live less of a life, I’m just recognizing the fact that I am not.

 I am aware of how involved other people are in my life, to put it bluntly: I can’t eat, drink, shower, or even use the toilet without the assistance of someone else. Hence the question in the title of this blog. Is there such a thing as privacy when you have a disability? I argue that when you have a disability it is up to you to demand privacy whenever possible. The rest of this post will hopefully provide you the reader, with a new understanding and perspective as to why I feel the way I do.

Before I go much further, let me address the elephant in the room that I know some of you are thinking about. When you first glanced at the title of the post you probably thought it was going to be primarily about sex and intimacy. Yes, that is part of it, but not all of it. I am blessed enough to have, if I may be so bold as to embarrass her for a second, an extremely gorgeous and sexy little alien girlfriend. I count my blessings every day. I consider it a blessing that she not only puts up with my sarcasm and snarkiness but also my complete nerdiness as well as my overly emotional girly side at times. However, this is not the only way in which I am blessed; I also consider it a blessing that I even have a girlfriend. I am aware that most people with disabilities (I know I’m making a sweeping generalization) are single for one reason or another. Some of it is by choice but I believe, and now here comes the annoying opinion again, that most people with disabilities are single because most of the world sees people with disabilities as undatable. This is coming from experience. Yes, even someone with a disability like mine can be guilty of this type of thinking.

Now that I am done doting on and embarrassing my girlfriend, let me get back to my main point about intimacy, sex, and privacy. Some parents who read this next part may not agree with it because they may have a different view on physical intimacy than I do. You have that right and if you choose to, please skip over this part of the post and move on to the non-intimacy section of the article. I believe in every relationship whether it is one that is just beginning or one that spans multiple decades, there is a need and desire for intimacy both emotional, spiritual, and physical. When you have a disability, however, that may look different than the “norm”.  When you have people all around you 24/7 or close to it, it is nearly impossible to have a “private” conversation even if you put in headphones and talk on the phone or video chat while you are apart, or when you are together shutting the door, problems still arise. 

Caregivers or support personnel or whatever you choose to call them are always around and walls are only so thin. Whether you are having a normal conversation or a more risqué one, unfortunately, whether they intend to or not, other people will overhear your conversation. That being said, it is common for all of us disabled or otherwise, whether we comment or not, to form judgments about what we hear and fill in the missing pieces. 

If that wasn’t bad enough, say a couple reaches that stage where they are ready for physical intimacy and they require caregivers, another question arises. How to involve or not involve help? Everyone deserves physical intimacy at some point in their lives, the question is what do you do when you can’t do certain things on your own? Do you not do them?  It is a sticky question that I don’t think many people are asking. “That dreaded opinion again”. Perhaps the reason they don’t ask such questions is because they don’t see disabled individuals as “capable” of being physically intimate. 

Anyway, moving on from the uncomfortable section of this post. As I said earlier, privacy is much more involved than just privacy in a relationship. How does one maintain their dignity if they are “exposing themselves” and every detail of their lives to caregivers or family members? There are some in my life who have recently said to me that there is no such thing as privacy when you have a disability. It took me a while, but I have come to partially agree with them. I argue that even though one may have family or caregivers extremely involved in their lives, it falls on the person with the disability to create boundaries. This could be something as simple as asking the people in your life to announce their presence in some way; knock on the door before they enter the room or give a verbal signal. Finally, another example of a boundary could be not having people speak for you when you have a disability as they often do (these are only two examples of many).

In conclusion, I believe that privacy is relative when you have a disability. Some aspects of your physical care cannot possibly remain private, but there are aspects of your life whereby taking the proper initiative the person with the disability can maintain or restore some of their privacy. 

Anyway, this has been a long blog and before I overdo it and lose the impact of what you have read, I will say good day. I hope you have enjoyed not only this blog but the other blogs you have read this week. More to come on Monday.

One Self-Advocate’s Journey To Redefine the Shoe Industry for People With Disabilities Reinforces a Point That My Dad Has Been Preaching for Years

In Tuesday’s blog post, I talked about a speech I heard this past weekend from a young man by the name of Matthew Walzer. His speech came at a perfect time in my life. As I said in the blog Tuesday, until this past weekend I had been lost and in a sort of never-ending fog. Since Matthew’s story impacted me so much, I thought I would share it and its similarity to a point my dad has been trying to get both me and my sister to appreciate for years. By the end of this piece, you will not only understand the great wisdom of my dad but also you will hopefully appreciate the tenacity Matthew showed in his effort to redefine sneakers for people with disabilities. In short, by the end of this piece, you will understand why I believe in the saying, “Attitude is altitude”. 

Every good story must start with a problem that the protagonist must face. Only this time, Matthew Walzer wasn’t writing fiction. Matthew was born with Cerebral Palsy. While some with Cerebral Palsy are wheelchair bound like myself, Matthew can mostly dress himself. The only problem is up until he decided to change it at the age of 16, he had a problem tying his shoes. Matthew would have to ask his parents to help finish dressing him. Matthew was not satisfied with this. He had dreams of going to college but was worried about being embarrassed, and who wouldn’t be embarrassed, by having their parents tie their shoes in college. What was Matthew to do? 

Being proactive and a forward-thinking individual, Matthew wrote a letter to one of the largest shoemakers in the world. He wrote to Nike explaining his dilemma and after years of development, Nike would come out with a slip-on sneaker which they called FlyEase. Matthew may not have been aware of how his letter would change not only his life but the disability community as a whole, however, his impact is much more than just a shoe. Matthew displays a drive and tenacity that most people wish they had. 

When I heard Matthew tell his story this past weekend at the Florida SAND conference, I was immediately struck by two things. The first thought was holy shit this kid has balls. The second thought was I used to be like that. What the hell happened to that Jason? I used to live by the saying “Fear nothing, Regret less” but compared to Matthew I was falling short. As I said in Tuesday’s blog, Matthew has inspired me to change that, but he has also done what my dad has tried to do for what seems like a lifetime. 

Many years ago my dad told me to not let my disability hold me back from doing anything. At the time, he did not use the phrase attitude is altitude but clearly, that is what he meant. Matthew and my dad are both wise beyond their years. They both understand that our lives are ours to live. They only will be as good or as bad as we let them be. I know I am posting this on a blog related to disability, but Matthew’s point goes far beyond having a disability. Yes, he was born with a disability but besides the fact that he uses crutches to get around you wouldn’t know it. 

The attitude that Matthew and my dad and for the most part, I have, is not very common anymore. But given the state of the world in some people’s opinion, that might make sense. I argue that the negativity and pessimism that we see in a large part of society today regardless of disability, race, gender, or economic status, only produces negative outcomes. If we as a society think negatively, we will not be satisfied with how things turn out. 

In closing, perhaps the epidemic of depression and suicide as well as a feeling of not having a social identity can be simply attributed to the way one looks at life. But I could be wrong. After all, I’m just a 37-year-old Quad who has Cerebral Palsy. However, I believe that what I lack in the physical department, I make up for in common sense. Anyway, just food for thought.

Jay

The Power of Disability Advocacy: Making a Difference and Driving Change

I know I have written a lot about disability advocacy I felt it was time for a refresher/ beginner's guide for those who are reading this blog for the first time and do not know much about disability advocacy. I recommend you read this blog first and then sample my other pieces. 

Disability advocacy is a formidable force that has the power to break down barriers, challenge stereotypes, and drive meaningful change in society. It serves as a catalyst for transforming attitudes, policies, and systems, ultimately creating a more inclusive and equitable world. In this blog post, we will explore the remarkable power of disability advocacy, highlighting how it makes a difference and drives change at individual, societal, and systemic levels.

Empowering Individuals and Amplifying Voices:

Disability advocacy provides individuals with disabilities a platform to be heard, acknowledged, and valued. It empowers them to advocate for their rights, express their needs and aspirations, and participate fully in society. By amplifying their voices, disability advocacy helps individuals gain confidence, build self-advocacy skills, and assert their rightful place in all aspects of life.

Shattering Stereotypes and Promoting Inclusion:

One of the key roles of disability advocacy is challenging misconceptions and stereotypes surrounding disabilities. Through awareness campaigns, education, and personal stories, disability advocates work tirelessly to dismantle biases, promoting a more accurate and inclusive understanding of disability. By highlighting the diverse abilities and talents of individuals with disabilities, advocacy efforts foster a culture of acceptance, respect, and celebration of differences.

Influencing Policy and Legislation:

Disability advocacy plays a pivotal role in shaping policies and legislation that protect the rights and improve the lives of people with disabilities. Advocates work closely with lawmakers, government bodies, and organizations to advocate for the removal of discriminatory practices, the implementation of accessibility standards, and the provision of necessary support services. By driving legislative change, disability advocacy ensures equal opportunities, access to healthcare, education, employment, and independent living for all individuals with disabilities.

Fostering Accessibility and Universal Design:

Accessibility is a fundamental aspect of disability advocacy. Advocates work towards creating an inclusive environment where people with disabilities can fully participate. This involves advocating for accessible infrastructure, public spaces, transportation, information and communication technologies, and digital platforms. By promoting universal design principles, disability advocacy not only benefits individuals with disabilities but also creates a more inclusive society that benefits everyone.

Promoting Employment and Economic Independence:

Disability advocates strive to break down employment barriers and promote economic independence for individuals with disabilities. They work with employers to raise awareness about the value of inclusive hiring practices and the benefits of a diverse workforce. Through advocacy efforts, job opportunities are created, workplace accommodations are implemented, and discriminatory practices are challenged, fostering an environment of equal employment opportunities and economic empowerment.

The power of disability advocacy cannot be understated. It has the potential to transform lives, challenge societal norms, and drive change at all levels. By empowering individuals, shattering stereotypes, influencing policy, fostering accessibility, and promoting economic independence, disability advocacy paves the way for a more inclusive and equitable society. It is through collective efforts and the unwavering determination of disability advocates that we can build a world where every person, regardless of ability, is embraced, valued, and given equal opportunities to thrive. Let us stand together and continue to harness the power of disability advocacy to make a difference and drive lasting change.

Till next time, Jay. 

Florida SAND 2023 REUNITED CONFERENCE RE-ENERGIZES My passion and PROVIDES much needed SPARK For Advocacy

They say things happen for a reason. They also say for those of us who are religious that God has a way of providing exactly what you need when you need it, even if you don’t know you need it. I am living proof that this statement is true. In the following piece, you will learn that one event, no matter how small or big, has the power to change you if you allow God to implement his plan in your life.

For those of my readers who don't know, I am beginning the second year of my fellowship with an organization known as Florida Self-Advocates Network’D (FLORIDA SAND). They are a nonprofit, organization made up of 15 self-advocacy groups throughout the state. The organization aims to amplify the voices of individuals with Intellectual and Developmental Disabilities (IDD) on a local, state, and federal level.  According to their website, their mission is… FL SAND is an independent 501(c)(3) organization formed to expand the self-advocacy movement in Florida. It works through the support of local grassroots efforts, legislative platforms, networking with local businesses and civic communities, raising awareness, and promoting inclusion for all. FL SAND provides a united voice on statewide issues and topics that are important to self-advocates and all persons with developmental disabilities throughout the state. 

As a part of my fellowship, I am contractually obligated to plan conferences. As well as self-advocacy training, I am also required to develop an educational curriculum that focuses on self-advocacy. About six months into my fellowship, I started to develop negative feelings toward the whole program. I started treating it like a job that I could not wait to leave, instead of a job I was passionate about. I began to get lazy, purposely waiting until the last minute to complete assignments, however, that all changed after a conversation with one of my best friends who happens to be my sister. 

One night a couple of weeks ago I called my sister intending to just talk about her upcoming baby shower. Yes, I will be an uncle on or before October 12th and I am so excited to get to spend time with my first niece and show her that dinosaurs still exist, lol. Now back to what I was saying. My mom planned a baby shower for my sister during the weekend of August 18th through the 20th. She said she was extremely excited however, soon the conversation turned to me because during the same weekend that she was to have her baby shower, I was to attend the Florida SAND Reunited Conference. As a part of my fellowship, I had to speak at the conference with my colleagues. We were required to give a presentation on what is known as Route to Self-Determination. In short, the presentation centered around the concept of being in control of your life regardless of whether you have a disability or not. When my sister asked me if I was excited to give the presentation and have our dad see me at work, I responded with something like I feel like a fraud… I can’t wait for it to be over. Before she responded to my comment, I was in my head and I believed that I was not living the concept I was supposed to teach. She explained to me that although I am not living the concept 100 percent right now, I am missing the point. Self-determination is about having the ability to live with a disability and also to live the life you want with the proper supports. I was not seeing it this way and instead harping on the part of the concept regarding living life the way you want. I was leaving out a crucial part of the concept ie; the first principle of self-determination having the supports you need and making sure they are the way you want them to be. 

As a result of this reality check, I went into the conference with a positive attitude and I believe this is why God put me at that conference, he knew I was looking for direction in my life and he also knew that I already had it, I just wasn’t paying attention to the signs. Long-time readers of this blog will remember that I have another blog entitled “The Modern Day Moderate”. I have also mentioned that I was a founding member of an organization known as “Access The Vote” which was started by Disability Rights Florida.  Sadly, because of my negative attitude as of late, I stepped away from the organization, however, God figuratively smacked me in the face, and told me I needed to get back involved with the organization when he orchestrated a conversation between me and my friend Laura-Lee Minutello who works at Disability Rights Florida as a part of Access The Vote. She presented me with an opportunity to rejoin the organization and I could not pass it up. I will be attending their upcoming voting summit on Wednesday, September 13th.

Along with the conversation with Laura, the presentation I gave was extremely well received. I am so proud of my fellow fellows for all the hard work and preparation we put into this conference. Thank you for allowing me to be a small part of the team. Even though we experienced ups and downs along the way I think we were exactly the right group of people to give said presentation. I have learned a lot from every one of you. As an added plus I got to spend the weekend and work with my awesome girlfriend Sam. I could not have asked for a better weekend. I also would like to thank Rick Patterson for his tremendous hard work and understanding while not only taking care of me but my dad as well. Thanks, dude, even though we butt heads occasionally I know you are a true friend. 

As a final thought, I want to thank our keynote speaker Matthew Walzer, your speech was inspiring. Don’t worry, I am not going to step on your proverbial shoes and join the athletic wear game. But you have inspired me to write to companies and see if they can create an accessible dress shoe and suit. Thank you for the inspiration.

Okay so I lied, I wasn’t done. The conference inspired me to do what my dad told me I should do when I was in eighth grade. Anyone who knows me knows that I’m good at several things including trivia, comedy, and sarcasm, however, I am as some people say an expert at arguing. I have decided to combine this with my advocacy work and pursue my law degree. I plan on focusing on public policy and civil rights.  After obtaining my degree I will continue to fight for the rights of people with disabilities and underserved minorities so that we can move one step closer to an equal society for all.

Seriously, I’m done this time. Thanks for reading. Sorry for being so long-winded but as the title says, I am newly inspired and felt I had to let everyone know how awesome the 2023 Florida Sand “Reunited Conference” was. 

Until next time…

Jay