This is hard to write – perhaps harder to deal with than chronic debilitating nerve pain, which I suffer from daily. When you are physically disabled and require 24/7 help to take care of all of your daily needs it requires a village of caregivers, family, friends, agencies, medical professionals, etc.
I preface what I’m about to dive into by first saying each and every person in my life who helps to take care of me, paid or not, Thank you! You physically help me live my life each and every day, which is the most beautiful gift I could ever ask for. I appreciate every single human who takes time out of their lives to make my own life possible. This, in turn, allows me to spend the time advocating for others who need my help. It also affords me the opportunity to live each and every day to its fullest and advocate for systemic disability inclusion.
Now, onto what is behind the curtain of my life that many who do not live with a disability simply do not see because much of it is hidden. My life is my own, but it is not at the same time. I can’t do what I want and how I want to do it at all times.
This has been a project near and dear to my heart that I have been working on for the better part of a year, but projects have just been popping up left and there never really seemed to be a right time to take the leap. So, I decided weeks ago to just dive right in as they say (figuratively of course because I already took the physical dive 12 years ago;) – and, I certainly don’t have any desire to do that again!
I am incredibly humbled, honored, and proud to announce the launch of my new YouTube channel called
“Shower Talk with Ali – Where No Topic is Limit”
To complement my website and my writing I appreciate many people love to watch videos. In light of this, I’ve created this YouTube channel with the sole focus of approaching and normalizing uncomfortable topics in my life and the disability world so that folks from all walks of life can understand what many of us go through on a daily basis. This is not a channel just about inspiration, but really diving into understanding some of what many of us with disabilities live through each and every moment of our lives.
In the spirit of who I am I have approach many topics through the lens of dark humor, determination, and sheer grit at times. No matter what situation I may me dealing with in life I always seem to find the comedy behind every experience my life.
I do hope you enjoy, follow my channel, like, subscribe, and comment so that I might be able to make videos on what you are all interested in! This channel is by no means just for people with disabilities, but for EVERYONE may just be curious and loves to learn about topics that are very unfamiliar in your own life.
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 super excited & honored to have been featured in a news story by Spectrum News on disability inclusion in light of recent events with the paralympian who was unable to bring her caregiver, her mother, to Tokyo.
As I always say, Disability Doesn’t Discriminate — anyone can join the club for any reason and creating a globally inclusive environment whether that be in the paralympics, employment world, your community, the government, etc. should be at the forefront of everyone’s mind!
I am so honored to be featured once again in New Mobility Magazine to talk about my marriage, the challenges we face, and how we work through them. Marriage is challenging enough, but when you add in the layered complexity of disability into a relationship I find that you have to work even harder on communication and making things work.
Check out the article below and I hope you enjoy 🙂
Mental Health. Society has come to appreciate the importance of mental health just as much as physical health in recent decades, but somehow there still a negative shadow cast over those who open up about mental challenges they may be facing. If you break your leg people openly tend to express sympathy for the pain you must be feeling.
However, if you talk about bipolar disorder, depression, anxiety, or whatever else ails you inside the complicated workings of your brain, oftentimes, people tend to form an opinion about the stability of you as a person. The leads to people forming quicker judgments about your ability to function in your job, your life, family or home. It’s unfortunate, but mental health, in my opinion, is still not a topic that gets the attention it deserves.
As many of you know I like to crack open uncomfortable topics and dive right into them. With that said, I’m going to open up about some of the serious inner demons that afflict me on a daily basis, how I deal with them, and, frankly, how I compartmentalize most of them just to get through my days.
Recently my husband and I took a week long vacation to visit a friend in Florida. I distinctly remember one day when he was helping me with all of my bathroom duties, getting my swimsuit on, lifting me up from a very low surface bed (killing his back), lifting me into the pool, showering me by the pool, helping me with my makeup, straightening my hair, and then cleaning up. These are just a few of the things he’d helped me with that day, but the list really does go on.
The numerous amount of small things I need help with in a day seem endless whether that be filling my water bottle, fixing my feet on my wheelchair, grabbing my legs as I have uncontrollable spasticity, getting me in bed when my pain is through the roof, etc.
The day came and went, and as I was hanging out with my girlfriend I rolled back into the bedroom to find him sprawled out on the bed. He was just tired – I mean how could he not be? He was taking care of his quadriplegic wife 24/7 for 8 straight days. I remember thinking how guilty I felt for being such a burden, but not once did he make me feel that way. These are my own demons I battle with as a quadriplegic because I need full-time help every day – all day.