Posts

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 th...

Remembering Judy Heumann: How Her Life and Legacy Transformed the Disability Community into What It Is Today.

Disability pioneer Judy Heumann passed away this past weekend. Since my blog focuses on disability related issues I would be doing you my readers a great disservice if I did not write a piece on the late Judy Heumann, without whom this blog may not even exist.  Judith ”Judy” Heumann was born on December 18th 1947 in Philadelphia and raised in Brooklyn. She contracted Polio at the age of two. Fortunately for her, her parents did not subscribe to the popular theory on people with disabilities at the time. When the doctors suggested she be institutionalized because there was “no way she will ever walk” her parents chose not to listen.  Miss Heumann began her advocacy work in the 70’s when she fought the New York board of education over the right to teach in a classroom. She would eventually win the battle and become the first teacher with a disability in New York. Her advocacy efforts would soon reach far beyond New York.  In 1975 Ed Roberts asked Judy to move to California ...

The Personal Care Crisis Continues: How a Lack of Funding for Home and Community Services Reinforces Larger Problem Within The Disability Community

To all my regular readers I want to say welcome back and thank you for your continued support. To anyone reading this blog for the first time welcome, please make yourself comfortable and grab a seat or a parking space for your wheelchair and a beverage and enjoy what is to come. In January 2014 I wrote a blog entitled “Aide Care System; The Hurtful Loop Holes” I have included the link to this blog at the bottom of this piece. That piece discussed a crucial problem when it comes to aide care that people with disabilities still face in 2023, however one area it did not cover in great detail was the lack of funding for aide care waivers. The waiver goes by different names depending on the state you live in. I currently live in Florida. Here the waiver is known as the Home and Community-Based Services Waiver. The waiver in theory like all the other waivers started out with good intentions but to be quite honest good intentions don’t pay the bills. In my previous blog on the subject, I tal...

Unlikely Advocates: How One of America's Most Influential Families Became Some of the Disability Community's Strongest Allies

Recently I finished a book entitled “Rosemary: The Hidden Kennedy Daughter” by Kate Clifford Larson. I was turned on to the book by my girlfriend Samantha Lebron. She knows that I love history, especially political history. When I first began reading the book, I wasn’t sure what to expect. The Kennedy family has been written about extensively. I thought this would be another look at the Kennedy family through the lens of politics, and, to some extent, it was, but it was much more than just a book about politics. As I got deeper into the book, I realized the book was about something more. It was on a deeper level about the history of the treatment of people with disabilities in the United States. Although Rosemary Kennedy was born to one of the most affluent families of the 20th century, unbeknownst to her she would face prejudices not only from the outside world but even from some members of her own family. Without recounting the whole book which I highly recommend you should read, I w...

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 ...

"Kasey to The Rescue" Gives A Well Needed Perspective on Disabilities

I was turned onto to a book entitled “Kasey to The Rescue” by Ellen Rogers by my aunt Eileen this past weekend. This book was immediately captivating it dealt with a subject matter close to my heart, challenges related to living with a disability. The main character was a 22-year-old named Ned who got into a car accident at the beginning of the book. Not only does the author who happens to be his mother do a great job of detailing what it is like dealing with a Spinal Cord Injury from the perspective of a loved one she also introduced this reader to a new form of "assistive technology", that of a helper monkey. Immediately I was intrigued by the concept of the story and wanted to do more research on the helper monkey concept as it could relate to my physical needs. While I have not yet completed my research, I am definitely hopeful about what I have found. This book also holds a special place in my heart because it was turned into a movie which I am going to see later tonight...

Getting Back Out There: Carnival of Crue

It has been several weeks since my last post in the Getting Back Out There series. It would be an understatement that a lot has changed. I am in a transition period with my aid care and on top of that, I have been given more responsibilities at FSA Central. That being said I figured now would be perfect to review a show I went to a couple of weeks ago. On July 16th I attended the Carnival of Crue show at the Reilly Arts Center what follows is a review of the show and the venue itself in terms of accessibility.  From the beginning, I could tell this night was going to be a particularly enjoyable evening. I once again found myself at the Reilly Arts Center which is a quaint medium-sized venue. For those of you who have been keeping up with my blog, you may remember I reviewed the Lynard Skynard cover band "Nothin' Fancy." That event also took place at the Reilly Arts Center. As with Nothin' Fancy, the Carnival of Crue show was part of a local classic rock radio station...