It’s hard to believe that nearly 10 months have passed since being crowned Ms. Wheelchair North Carolina 2022. I have been engaging in so many advocacy activities over the last year to further my advocacy mission.
I am just a week away from heading out to Ms. Wheelchair America 2023 to compete with 22 other amazing wheelchair advocates in a competition that is going to create memories for a lifetime.
I looked up some of my amazing competitors, some of whom are actually friends of mine, and they all have fantastic platforms engaging in meaningful work to make our society more inclusive to folks with disabilities. It certainly going to be stiff competition for sure.
I know people who lose competitions probably say this all the time, but honestly, WIN or LOSE I am certain of one thing. All of the advocacy work I engage in around the country and globally involve collaborating with people. I don’t just mean anyone, but rock-star disability advocates in their own respective fields regardless of what disability they may have.
So, I KNOW THIS FOR SURE — I will be collaborating and partnering with many of these rock-star women for years to come on so many different missions in the name of making the world we live in more inclusive for future generations. I commend those that came before me and it is only fair that I do my part for those who will take over in the decades to come.
I never critically stopped to ponder why being a great communicator can also lead to a very lonely existence at times. Since I was a child, I have always been “perky” as they say and never had a problem in social settings. I love people, communicating with them, helping them, and always trying to find a middle ground between disagreeing viewpoints.
Since my accident so many people tell me that my patience levels, communication skills, and calm demeanor are extremely admirable. This is what I’m told to my face anyway. I believe it’s true though as I have this odd ability to stay unusually calm in stressful situations, and be patient for far longer than I probably should be at times.
I attribute much of this to Blue Cross and Blue Shield with the hundreds of hours I’ve spent on the phone with folks that are not particularly bright trying to get medically necessary equipment approved. I recall this one day I spent nearly 7 hours on the phone calling back Blue Cross and Blue Shield trying to find someone who could actually help me or transfer me to the right person. On that particular day I do recount losing my patience as I started to raise my voice, which is very unlike me.
On a serious note, and I’ve written about this on my social media before, living with a disability where you are physically dependent on other human beings to help physically take care of you each day is a blessing, and a challenge wrapped up in an emotional bow.
Really honored to have worked with Help, Hope, Live, a non-profit national organization dedicated to raising money for medical bills and expenses through crowdfunding.
This is a topic that is certainly not new, nor unfamiliar to many of us with disabilities. It’s so expensive to live with paralysis, especially if you have to pay everything out-of-pocket or if you’re trapped within the governmental system.
I dive into some of the challenges of navigating the financial burdens associated with life as a C6 quadriplegic.
New YouTube Video Out — Quirky Quad “Shower Talk with Ali” — UNCENSORED!
I bet you don’t know a lot of people that have spent a year in bed. Why would you? This is definitely not normal. I’ve written about it before, but I take you on my video journey with probably more information and photos then you care to look at, on what my life was like when suffering from a major pressure sore down to my tailbone in 2015.
This is a story of hardship, triumph, mental fortitude, sexy ICU Photoshoot’s, a ton of dark humor, and how I survived an extremely traumatic experience in my life.
Most people think the physical side of living in your bedroom for nearly a year looking at four walls was the most challenging part with all of the surgery, but it really was all mental!
Some of the strategies I employed in my own life have allowed me to get to where I am today and be who I am today! Leaving my professional skill sets aside, having a lived experience with disability makes so many of us profoundly capable of so much more than society and companies give us credit for.
We only need the chance to prove that we are incredibly resilient human beings, intelligent, resourceful, seriously organized, incredible at paying attention to detail, and determined to succeed more than most I would argue.
Enjoy, but I will warn you there are some graphics that might be a little bit disturbing, but are 110% real life.
Living with a spinal cord injury as a quadriplegic is no joke. Death is quite literally around every corner every day of the year. Food for thought when you think about perspective in life.
“In law enforcement, a lot of what I saw broke my heart. I’d come home and take my clothes off and just shed the world away,” he (Dwayne) recounts … And while Dwayne’s non-textile appearance this Saturday afternoon might shock some, the reason behind it will come as no surprise to anyone familiar with a common 21st century prescription: self-care.”
I had the distinct pleasure to dine with Billy and a gaggle of other movers and shakers in the Raleigh, North Carolina Triangle area this past week. There were so many influential, inspiring, and well accomplished professionals engaging in fruitful banter.
How did I get invited to such a dinner? I had met each of these people individually over the last several months and, coincidentally, many of them were already well acquainted with each other as many of them ran in the same social, and political circles over the last several decades.
So, in a very “Ali” fashion I decided to be pleasantly persistent and arrange a dinner with new friends, old and reconnected ones.
If you’ve ever applied to college you’ll likely remember waiting anxiously by the mailbox for that large envelope, which was filled with hopes and dreams of your acceptance letter into the school of your choice. The small envelope on the other hand, filled with dread and disappointment, meant that you were likely going to have to fall back on your Plan B School.
As the years roll by and you grow up that distant memory of the large envelope stays with you. It certainly stayed with me. Over the last several years after fighting health insurance battle after health insurance battle I quickly came to realize the large envelope in your mailbox was the one filled with despair, rejection, and disappointment. I dread that big envelope in my mailbox that has Blue Cross and Blue Shield labeled in the top right corner.
Over the past several months I’ve been tirelessly working on two major insurance battles, which has taken my every waking moment to push forward on while simultaneously building up my disability advocacy career from every angle I could think of. Every day as I would roll down to the mailbox my throat would get a little bit tight, my blood pressure would start climbing, heart racing, and as I was watching whoever was helping me open the mailbox that day turn the key I waited in eager anticipation for either the small envelope or the large envelope.
he last two battles I’ve been fighting have been for the VitaGlide, an adapted physical exercise rowing machine, and a total hospital electrical bed. Blue Cross and Blue Shield had initially rejected both requests. The total hospital electrical bed was rejected on the grounds that it was not medically necessary and the VitaGlide on the grounds that it was a non-covered benefit. I’ll explain the difference in a moment, but I’ll start out by saying when you are rejected on the basis of something not being medically necessary you have many more avenues to pursue for appeals than you do if you get rejected because an item is a non-covered benefit under your insurance plan.
It’s hard to believe that it’s only the middle of February and with the state of affairs in the world today I try very hard to focus my energy on affecting change in whatever capacity I am able to in order to bring a little bit of light into this world. I’ve said this time and time again, but kindness, positivity, and perseverance go a long way in my book.
I would be a hypocrite if I didn’t attempt to put actions to my words. So, I have made quick work of focusing on two new Blue Cross and Blue Shield cases, which I believe are so important for so many who are disabled.
My overarching mission in these constant insurance battles is not to just simply win “stuff” from insurance companies, but rather to strategically attain medically necessary durable medical equipment that not only improves the quality of so many people’s lives, including my own, but our independence and dignity.
The challenge lies in that many of our health insurance policies are simply outdated and many of them do not factor in the special needs for those who are severely disabled. With that said, it is my goal to create a host of documents with letters of medical necessity written, so patients can just hand them to their doctors and fill in the necessary personal information.
I’m working to change the system from the inside out, but in the meantime many of us really need to learn how to operate and navigate within the broken system we are currently faced with. It’s not easy and most people don’t have the time, energy, or know-how to get things accomplished. Unfortunately, many people just take their insurance policy at its word and don’t test the system.
Change does not come from blind compliance!
We have to push the boundaries because we are, the disabled community, a very much forgotten about segment of the population in the eyes of health insurance policies.