I was surrounded by some amazing Disability Advocates in the community and great friends. We discussed the concept of technological accessibility and a lot of the issues facing many of us with a range of disabilities.
It was such an honor and a really big discussion for me to be a part of.
It’s so important for each of us with disabilities to get our voices out there and offer different perspectives to push corporations to change the way they think about creating their products, and how they affect our global community at large!
“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.
I am truly beyond humbled and incredibly honored that CBC17 News crew in Raleigh came out to my home to do a story on Ms. Wheelchair North Carolina 2022 and the efforts many of us are making in trying to reform healthcare policy within the insurance system.
“Self Advocacy” is the single driving mission I have in my life to help others with disabilities not only survive in their life, but thrive through aiding them in getting the medically necessary equipment and services they need in their own lives!
This will always be a long-term advocacy project of mine and I will not stop until we see systemic change, but in the meantime, we need to navigate the broken system we presented with, which takes a village of disability advocates standing up for the masses!
The culmination of my life’s work thus far to being crowned Ms. Wheelchair North Carolina 2022 in November 2021 is one of seemingly insurmountable obstacles, determination, support, and unrelenting determination …
… People frequently question how I have arrived to where I am today to be a professional, disability advocate, mentor, and a ferociously “Pleasantly Persistent” woman with the motto: “NO is just a starting negotiation point.”
…. Through all of this I was approached to apply to run for Ms. Wheelchair North Carolina in November, 2021. I met some incredible ladies who are now lifelong friends and I had such an amazing weekend. My specific platform for the competition was health insurance advocacy for medically necessary durable medical equipment …
… Don’t get me wrong, it’s an honor to have won this competition and I will compete in July 2022 for Nationals, but it really was and is the collaboration between individuals with disabilities that sparks my pure joy! …
…. Here is one quote I live by “Luck is the Residue of Design” – if you design your life in such a way to constantly have opportunities presented to you even if other opportunities fail, you have a higher probability of “Lucky” things happening for you.
With that, wish me luck at Nationals, but the work will not stop over the next eight months. I have so many big plans, many of which I’m sure will lead me down unfamiliar roads, but I’m making sure I have plans A-Z in place at every turn to course correct in my own life. This is the key to lasting change and success …
I’m so honored and extremely grateful for a shout out from the team, especially Diane Wilson, at abc11 News on the healthcare advocacy work I am working on in the community and my Ms. Wheelchair North Carolina 2022 title this past weekend !
A life with paralysis entails much more than meets the eye at first glance. There are a whole host of secondary complications many of us who are wheelchair users can attest to, myself included, as a C6 quadriplegic. However, this does not stop so many of us from continuing to live our lives to the best of our ability and participating in a community, albeit in an adapted capacity.
It’s one thing to find a job, take care of our bodies, and navigate a system in society that is not yet fully integrated with respect to accessibility. It is quite another, however, to find incredible non-profit organizations around the country whose sole mission is to enrich the lives of those with physical mobility impairments so that those of us with disabilities can enjoy, not just trying to survive our lives, but thrive as well. One such non-profit organization called Bridge2Sports in North Carolina has made it their mission to assist people with physical disabilities to participate in an array of accessible and adaptive sports such as wheelchair basketball, Boccia, hand cycling, kayaking, archery, air rifle, goalball, and golf.
It is organizations like these that allow many of us with disabilities to feel connected, build community, and enjoy physical sports despite our physical mobility limitations. The Christopher & Dana Reeve Foundation offers Quality of Life Grants to organizations such as Bridge2Sports to enrich our lives beyond our daily responsibilities.
When you believe in something larger than yourself, it’s quite extraordinary what you are able to accomplish. After becoming a complete C6 quadriplegic in 2010, it took me quite a few years and multiple long stents in the hospital to come to the realization that I simply had to find a coping mechanism for living an entirely new life in a very different body.
The absurdity of spinal cord injury with respect to the fact that being paralyzed is oftentimes the least of your challenges as compared to the endless secondary medical complications, caregiving challenges, financial burdens, to name a few, can turn a perfectly sane individual into one who is tinkering on the edge of insanity. The question remains is how do so many of us with these life altering changes cope with, what can only be described at times, as a revolving circus carnival of animals?
We each develop and build upon our own coping mechanisms as the year’s progress and as we become a little bit older and wiser in spinal cord injury years. For me, dark humor is, bar none, my number one savior to get me through most days.
Becoming a quadriplegic and being paralyzed from the chest down may appear to be the most challenging life altering event many may ever go through in their life. However, leaving aside the endless secondary complications that can arise from living a life with paralysis such as pressure sores, nerve pain, respiratory issues, osteoporosis, infections, bowel obstructions, bladder incontinence, to name a few, can, often times, pale in comparison to the financial burdens associated with living a life with paralysis. The financial hardships associated with any type of disability, one could argue, is more debilitating than the disability itself!
For the purposes of this article I’m going to be discussing some of the financial challenges and realities of living a life as a quadriplegic as opposed to a paraplegic. In general, a quadriplegic needs round-the-clock care to help with basic functions such as going to the bathroom, eating, dressing, etc. While every injury is different and there are certainly some quadriplegics who I know who live independently, I will tell you about my life in particular.