Thank you to the Christopher Reeve Foundation for allowing me to be a guest blogger to discuss some amazing projects I am working on with a beautiful organization called Open Inclusion. We work with people with disabilities and brands to make products and services more accessible for all!
Change only happens when we speak up, take action, and do something about it!
Over the last 18 months, I have worked tirelessly to marry my professional career with my disability advocacy work. I reached a point in my life where the work I engage in needs to be meaningful and help others in the disability community. I have come to realize this is who I am at my core – a person with a disability who believes in paying it forward, human kindness, and advancing inclusiveness for all.
I have been extremely fortunate to meet incredible leaders around the globe who have asked me to participate in delightful projects to help people in the pan-disability community gain meaningful employment, have their voices heard and time compensated for their insights. I am involved in many projects, but what is incredibly humbling to me is working with companies that truly celebrate my lived experience with a disability.
One such beautiful company I have recently started working with is Open Inclusion. Open Inclusion is an inclusive research, insight and design agency based in the UK and operating globally. Open has been built with, for and by people with disabilities. We amplify the voices of our diverse insight community by informing leading brands of their diverse customer need to help create solutions that are desired by people with disabilities, and better for all….”
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!
Many of you know I’ve been fighting for an adaptive rowing machine called the Vitaglide for some time now with Blue Cross and Blue Shield.
I hit a dead end working directly with BCBS policy directors and I’m now introducing legislation with NC State Senator Jay Chaudhri in May. Very exciting!
In the meantime, I’m working closely with all of the folks at Vitaglide for promotion awareness of adapted exercise equipment for long-term wheelchair users.
They were so kind to write an article on me and all of the work I’m trying to accomplish with respect to health equity and not just health equality!
Every time I fail something, and I do fail quite a lot, or something stops dead in its tracks, I usually have 10 other things in the works.
Life can be utterly exhausting, but I know one person can make a difference even if it is only to inspire others to carry on the work they have started!
Thank you Vitaglide team for highlighting some of the work I am engaged in and spotlighting my consistent efforts for which I won Miss wheelchair North Carolina 2022 on — Health Insurance Advocacy! Nationals here I come in Grand Rapids Michigan from August 15th to August 21st!
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.
I am incredibly honored to have Billion Strong, an identity and empowerment organization designed to bring millions of voices of persons with disabilities together. I met Debra Ruh, Founder and Executive Chair of Billion Strong and CEO of Ruh Global IMPACT in the last year. She is a light in so many people’s lives, is incredibly bright, smart, and cares intensely about giving voice to people with disabilities around the world.
Debra invited me to be Secretary of the Board for Billion Strong and it is my distinct honor to serve this incredible global organization advancing disability initiatives.
There is a BIG difference between Equality and Equity, and while they are really important for those of us with disabilities because one size does not fit all in many aspects of our lives, it’s also important to appreciate the progress we’ve made in first world countries on this front. It’s imperative we continue to push for systemic change, but while we do so we need to stop and think critically about the unbelievable sacrifices the generations before us put forward in order to allow many of us to have the freedom to continue to fight for change!
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.