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. Frankly, when you sustain or are born with a life altering physical disability I have no doubt most people will likely have their own version of how they overcame and learned to thrive in life despite the obstacles constantly thrown in front of them.
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.”
I work with a lot of newly injured quadriplegics who simply cannot see the forest beyond the trees. I was one of those individuals for many years despite working professionally I pretty much kept my head down, engaged in rehab, and mentally floated through years of my life with no direction.
I simply could not find my purpose in life. I have always been bubbly, positive, and pleasant – yet I was slowly dying on the inside. To be fair, I spent the first six years after my spinal cord injury in and out of hospitals with pulmonary embolism’s, cervical cancer, life-threatening cysts in my spinal cord, debilitating pressure sores leaving me in bed for years on and off with multiple surgeries, to name a few. I have some friends who are quadriplegics who never seem to have any medical complications, but I was not one of those people. Lucky me!
In any event, it is only through my family support system I managed to physically and emotionally survive. They held me up, gently pushed me forward, and through their unwavering dedication helped me build my new life after breaking my neck on that fateful day in August of 2010.
Not to boast about my strengths, but I’ve always been a persistent, hard-working, dedicated, stubborn at times, and glass half-full kind of girl. However, it doesn’t matter what qualities you may have personally or professionally, what skills you may possess, or even how much money you make – if you don’t have a purpose or direction in life it can be immensely challenging to find reasons to go on.
In the Beginning …
For 5 straight years after my accident my family was and still is my network. However, I didn’t have a disability community to share ideas with, commiserate with, get inspired by, etc. It wasn’t until I moved to Raleigh, North Carolina from China in 2015 did my life quite literally change forever – not at first though! When I arrived in Raleigh life was chaotic; I going through caregivers as fast as I could drive my wheelchair; I was very quickly stuck in bed for an entire year with surgeries and pressure sores; and my outlook on life became dark once again.
We all have our demons, but it’s what we do with those dark times and how we emerge from them that I believe really defines us as human beings. It’s easy to judge one another when you see someone in a dark spiral and you can’t quite understand why they can’t snap themselves out of it. Depression and anxiety are very real and I suffer from them, too, periodically regardless of my disability. However, I have the type of personality where I have the ability to pick myself up with the help of my support system to turn those feelings into drive and purpose. Some people need medication, therapy (well, I have a therapist and I think it should be a requirement in life for everyone to have one), exercise, etc.
The key, in my opinion, is coming to the realization that life is so damn short, pardon my French, but we are quite literally on this planet for a blink of the eye. So, I actively choose (and work at it every day) to find my happiness in helping others, succeeding professionally, and making even the tiniest mark for systemic change in the world.
Okay back to 2015 – I was about four months into my pressure sore prison sentence when I was looking at four blank walls. I remember thinking to myself “Ali, something has to change. You can’t just keep working, reading, exercising, and then feeling sorry for yourself at night.” I was never a huge Facebook person, but something inspired me one night to look up spinal cord injury Facebook groups. I joined dozens, but found several that were nonjudgmental, very supportive, and informative. I was inspired by people’s strength, openness, and willingness to connect with me on so many fronts.
Fast forward to 2016 – I was now healed from my pressure sore surgery, relatively medically stable, and after what I had been through I wanted my life to mean more.
How did I do this?
Patiently! At the time, I don’t think I even noticed the changes that were occurring within my own life, but little by little through advocacy, diversity and inclusion, disability rights, among other initiatives – did changes within me start to occur organically.
I can recall a specific moment when I realized what my, and this is specifically to disability advocacy, mission was to entail. I was denied a $30,000 functional electrical stimulation bike by Blue Cross and Blue Shield (BCBS). I worked with a fantastic company in Baltimore called Restorative Therapies who manufacturer the RT 300 bike and they helped me submit an external review to the Department of Insurance here in North Carolina. I didn’t think much of it at the time because, honestly, they did all the heavy lifting. I had conversations with the Department when they were reviewing my case, which took nearly 16 months.
Then the most amazing thing happened. I went to check my mailbox and I had a $26,000 check in the mail from BCBS stating that the Department of Insurance overturned their final denial = BCBS was forced to pay for this bike. I was over the moon ecstatic with joy, but again, I really didn’t make much of it because I didn’t do any of the work except make phone calls, and be pleasantly persistent.
A Spark of Inspiration …
It wasn’t until 2017 when I was starting to be denied different pieces of medical equipment I needed to survive that BCBS deemed were not medically necessary did I really start paying attention to the reasons BCBS were denying me for pressure relieving mattresses, specialized bed frames, seat elevator’s, specialized shower chairs, etc. I quickly pulled out the giant binder from 2016 with everything Restorative Therapies had written on my behalf. I was curious as to what arguments they had used to the Department of Insurance to claim medical necessity for the bike.
I spent a month pouring through dozens and dozens of pages where the clinicians were citing peer-reviewed journal articles to back-up a case for medical necessity. I dissected these documents page by page and started to devise my own plan. I have always been quite proficient at research, formulating an argument, proving my case, and wrapping it in a pretty bow!
I certainly knew my medical professionals were not going to be of particular help because many of them simply don’t have the time or know enough about spinal cord injury, so I was going to have to take my healthcare into my own hands at a granular level.
This is exhausting. I definitely cannot sugarcoat health insurance in any way, shape, or form; but you have to take life into your own hands if you want to live your best life, and improve the quality of your life! At the very least, you need an advocate by your side to help you with this.
Initially I was just advocating for myself. It didn’t occur to me to take my work national at the time and make this a platform for systemic change. Very slowly I started meeting pioneers in advocacy and policy change, connecting with national nonprofits, starting my websites (www.quirkyquad & www.chinaquaddiaries.org), slowly starting to appear in more podcasts, writing articles for national magazines, and really taking off in connecting with people, and being the connector of people. I love to pay it forward and I believe more strongly than words can express in human kindness.
What’s Next?
I am still working professionally, my advocacy career has given me more fulfillment than so many other aspects in my life albeit exhausting at times. In fact, I’ve been inspired by the work so many are doing around the country that over the last six months I’ve made the mental decision I’m also in the market for a career switch. It’s slightly intimidating at 38 years old to think about switching careers, but I’m working to dive into the corporate world of Diversity and Inclusion. I know I have the professional skills, the drive, the curiosity, tenacity, and determination to make this happen for myself.
However, with any new endeavor, it can be daunting and scary at times. Somehow I just keep pushing. I’m working on finding the right company who will utilize my talents and unique perspectives in ways that many of their employees do not have with my diverse background, and lived experience of being a woman as well as a person with a disability.
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!
So, you see, my journey to get here has been fraught with incredible successes and crushing defeats. Any journey you embark on, no matter how strategic a plan you have set forth, is going to take you in directions you may not always be able to anticipate. When this happens, I think it’s about being able to course correct quickly to make the necessary changes to succeed. I attribute my laser like focus and ability to shift my strategies, both professionally and personally, in life, in large part, due to my disability. Life can run so smoothly until it just doesn’t – more so if you have a disability because many of the challenges we face as a disability community are unthinkable to the able-bodied population.
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.