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.
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.
New YouTube episode out now – My dating life in a wheelchair as a C6 quadriplegic
Talking to you today about disability dating. Specifically, online dating tips I’ve used as a woman in a wheelchair and a C6 quadriplegic. Dating is challenging no matter who you are, but online dating is even more daunting – now online dating with a disability presents its own unique set of challenges! Several years ago before I got married I went on a giant dating experiment. I was facing a major surgery for a pressure sore I had and I had about five months to go before my 11th surgery.
I decided, quite truthfully, to just try and sleep with as many men as I could to explore my disability and sexuality. I probably should not be writing about this online or making a video, but this is my reality.
It took me 5 years to gain the courage to even start dating after my accident when I broke my neck in a shallow water diving accident in 2010 leaving me paralyzed from the chest down with limited hand mobility. Throughout my dating adventures I ran into all kinds of strange people, great people, and some guys who simply were curious about what it was like to sleep and/or date a woman in a wheelchair.
I have a very quirky sense of humor, so I created an Excel spreadsheet to monitor my success for online dating. I have been through it all. Hopefully some of what I have been through you will not experience, but I was on an experiment in the name of research! specifically, disability dating research! Even through my failures and successes I learned so much. Let me take you on a journey of some of my dating mishaps and wonderful successes!
Pain. Chronic pain. It’s no joke. It’s debilitating. It can lead to death. It can be physically and psychologically crushing to your soul. Living with physical paralysis, for me, pales in comparison to pain. If asked that “What If” question whether I would prefer to live in chronic pain or be paralyzed, at this moment as I write this article – I choose paralysis. This is a pretty powerful statement if you think about it. I am essentially choosing to practically go broke, have people’s hands in my body all day long, have someone dress me, use catheters and suppositories, etc. Think about what I am saying.
This is how debilitating my chronic pain is. For anyone who lives in chronic pain, your life has been undoubtedly changed forever. I know mine has.
When I was living in the ICU after breaking my neck in 2010, I was one of the unlucky ones who also simultaneously suffered a very deep pressure sore on my behind, pulmonary embolisms, and died a few times. I thought “this was the worst of it” to myself. Wow, was I in for a rude awakening 3 weeks after my accident!
You work so hard for so long on a specific project only to have it practically blow up in your face. I’ve been working with Blue Cross and Blue Shield policy directors for the last six months and I recently received beautiful “BS” letter as they say stating that my efforts to have adaptive exercise equipment reviewed under medical necessity was not going to be an option.
I have tried to play nice, it did not work, and that’s okay. I’ve simultaneously been working on legislation on multiple fronts to be introduced over the next few months and few years from different angles. I always try the path of least resistance first, this does not always work out, but it does not deter me either.
If you’ve been following my health insurance battles you will want to take a close read of this one because my entire disability advocacy career started out with health insurance equity. It is naturally a passion project near and dear to my heart and one which I will continue to fight for on so many fronts. What will ultimately end up happening is having to create a coalition of seriously smart lawyers, doctors, advocates, etc. in years to come. This mission is going to be measured in many years, not months.
Fortunately, my spinal cord injury has taught me the definition of extreme patience. For this I am thankful!
I may Sisyphus rolling the boulder up the mountain only for it to come crashing down on me. However, I will start rolling the boulder back up the mountain in real time! I will break the cycle eventually in the name of HEALTH EQUITY, and not just Health Equality.