My dear friend, Karen Roy, was gracious enough to host a beautiful podcast with Billy Warden and myself on our outing where I took Billy for a night on the town. I offered Billy a different perspective on being a wheelchair user by fitting him with a Permobil F3 power wheelchair and taping his hands up to make little “paws” as my hands are as a C6 quadriplegic.
Naturally, I cannot offer any able-bodied person a true experience of what it’s like to be a quadriplegic, but I did have the ability to offer him a perspective shift for a day a few of the challenges many of us wheelchair users and quadriplegics go through on a regular basis.
As Ms. Wheelchair America 2023 I am constantly looking to push boundaries with respect to inclusion, but also focus heavily on changing people’s perspectives in many arenas in life. Karen Roy, Ms. Wheelchair America 2019 was such an inspiration for me running as we shared similar platforms with respect to health insurance, adaptive exercise equipment, and medically necessary equipment.
For many of you that know me, as a C6 quadriplegic paralyzed from the chest down in a shallow water diving accident in 2010, swimming is the one activity in my life that reduces the chronic nerve pain throughout my entire body and allows me to get out of my wheelchair to swim independently.
Swimming not only helps with many of the physical secondary complications that arise from being paralyzed, but allows me the dignity, grace, independence to have one activity in my life that is the most freeing experience in my life.
After being humbly crowned Ms. Wheelchair America 2023 in August on the platform of health insurance advocacy I spend nearly 30% of my week giving back to the community to make our society more inclusive in addition to working a full-time job to cover a very expensive disability life for caregivers, health insurance costs, and much more as many of us with disabilities are unfortunately put in the challenging situation to navigate ourselves.
I love what I do and I live by two philosophies in life. Paying it forward and Human Kindness. I was extremely humbled to connect with 21 incredible wheelchair advocates around the country at the Ms. Wheelchair America competition. Each of these extraordinary women work each and every day, as many of us do, to push the limits of minimal accessibility standards within our country to create a more inclusive society for everyone.
A dear friend of mine writes for many magazines and wrote a beautiful piece over the last several months on my life, but what I think was very different as compared to many profile pieces was a night out on the town with me.
I fitted Billy up for a power wheelchair and taped his hands up as a quadriplegic with little “paws” like mine for a night as we went bouncing around town and dancing at the Dueling Pianos Bar.
In no world would I be able to simulate what it would be like to be a quadriplegic for the day, but at the very least, I wanted Billy to get a different perspective on life for eight hours.
I won’t spoil it because he is such a talented and brilliant writer — you get life from his perspective as an able-bodied person.
He also wrote a beautiful and wacky piece on my life.
I am humbled and extremely proud to have parted with National Nonprofit SPINALpedia. I’ve spent the last year writing a detailed guide to helping people navigate the health insurance appeals process with tips and tricks.
Navigating the health insurance approval and denial process can be a winding road filled with roadblocks at every turn, but if you understand where these barriers are placed you can divert around them in order to get to your destination. This will be a living guide and will consistently be added to over time by myself and many others around the country.
This guide is a culmination of my work over the last 10 years after being repeatedly denied medically necessary equipment I needed to not only survive in life, but to thrive. I have fought long and hard battles for equipment such as total hospital electrical beds, shower chairs, seat elevators for power wheelchairs, functional electrical stimulation bikes, pressure relieving mattresses, and more with much success.
My sincere wishes that people do not have to fight as hard as I have had to and please let this guide help you avoid some of the major mistakes I made along the way, and how I navigated multiple approvals with my health insurance company.
Working with Wheel:Life on part two of Dating with a disability. Such an honor to work with a great team.
Five years after Ali’s shallow water diving accident that left her paralyzed from the chest down with limited hand mobility, she went on a dating experiment (read more in part one). Healing from major surgery for a pressure sore, preparing for her 11th surgery from her injury, navigating life with a catheter and desperately wanting to experience romantic connection, Ali decided to approach dating with vulnerability, sexuality, and experimentation.
“I certainly did not approach dating as many do because I was in an experimentation phase of my life,” admits Ali. “When something didn’t work, I would try a new strategy, keep experimenting, and make sure to maintain some type of humor. Dating is supposed to be fun, even when it doesn’t always work out.”
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.
Dating – a word loaded with so many emotions and often, a word that evokes the feeling of being utterly overwhelmed. If you add in dating with a disability, heightened anxiety tends to be the “norm” in our community.
After I broke my neck in 2010, becoming a C6 quadriplegic, I spent the better part of six years believing dating was a fairytale conceived for the able-bodied population.
I went through internal struggles living in hospitals for years on end with seemingly insurmountable medical complications and learning to accept my body the way it was. I didn’t see myself as a sexually beautiful human being. Essentially, I felt as if I was asexual, and I couldn’t fathom the concept of another person finding me sexy because I couldn’t muster up the strength to even look at myself in the mirror for nearly two years.
When my medical life started to become stable, something very interesting happened to me almost overnight – I decided to take on the Herculean mission of trying to date. I didn’t know where to start. Prior to my accident I had no trouble dating. I simply went to a bar and there were men everywhere. When I went back to bars in my wheelchair, trying to meet men, I was devastated to realize men were not looking at me as they used to. I didn’t look any different other than the fact that I was in a wheelchair. This changed everything for me.
I quickly came to the realization that I was going to have to change how I date. I spent several weeks researching different online dating websites and decided to take the dive into an unfamiliar world. I asked many of my friends in wheelchairs what their experiences were like and most responses were quite negative, unfortunately.
I had a different philosophy – the worst someone can say is no. ….”
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.