When your EXPECTATIONS don’t always ALIGN with your LIFE PLAN
If you are a poker player and you are down on your luck, it’s best to cash out. Unfortunately, life is not always so black-and-white. Life is messy, complicated, emotional, and defies reasonable logic at times in your own mind. When I think about what props one up in life I think of a pyramid.
You have your physical health, mental health, and financial health. They can all get muddled together, but when two of the pillars start to crumble life can get very tricky trying to balance on a one-sided pyramid – essentially trying to balance on a pogo stick.
I don’t know one person on this planet who has not suffered from depression or anxiety (even if it’s seasonal) at some point in their life. I try to be as authentic as possible and showcase what I go through in the hopes that others may be able to relate, gain clarity in their own situations, or just know that they are not alone. Leaving my physical disability aside with all the accompanying secondary medical complications for moment …
read more…Wheelchair Airline Travel as a C6 Quadriplegic
Flying on a Commercial Airline as a C6 quadriplegic paralyzed from the chest down —
I wish I could sugarcoat this for this for wheelchair users out there who have significant mobility impairments, but I struggle to. Traveling in a wheelchair is no joke.
It takes a lot of preparation, a dark sense of humor, the ability to go with the flow, and most importantly, being able to vocalize exactly how you want to be handled.
Having a team is great and so important because most commercial airline attendants and ground staff do not know how to work with so many of us with different disabilities. I do believe it is on us use our words to tell people how we need to be handled.
Now, I’m not specifically talking about our wheelchairs, which is a completely different legislative matter. Am talking about us. Our human bodies. No two disabilities are like, but I wanted to share with you my experience transferring and moving from wheelchair to plane chair as a C6 quadriplegic paralyzed from the chest down from a spinal cord injury in 2010.
Honestly, it is undignified and it can be very embarrassing for many. I have a very dark sense of humor, so I go with the flow, but I appreciate this is no joke to thousands of us. You have dozens of people staring at you as you go down these tiny aisles. If you are overweight you are in a lot of trouble being able to squeeze down the aisles or fit into the airline chair. We need airline reform than many of us are working on this.
In the meantime, thought I would give you a sneak the behind the scenes of my recent flight to Costa Rica in April 2023.
Accessible SCUBA Diving
Check out behind-the-scenes footage of accessible SCUBA diving on my incredible trip to Costa Rica with Wheel the World and Il Viaggio accessible travel company. I I had only ever seen photos of folks in wheelchairs SCUBA diving, but not what was really involved with getting a quadriplegic SCUBA diving under the sea.
Well, I created a video for you and those interested in re-creating this trip or interested accessible SCUBA diving wherever that may be in the world.
Advocating through Ablest Insurance Policy Webinar – Hosted by the World Disability Advocacy Group
I have the distinct pleasure to be part of this incredible global group of disability advocates focusing on disability inclusion issues. We hosted the most amazing, inclusive, and engaging webinar on different perspectives on how health insurance affects individuals with disabilities around the planet.
Check out the YouTube Video:
History in the Making- CMS Expands Coverage of Power Seat Elevation Systems
In 2020, I was eligible for a new power wheelchair. I worked tirelessly to make the medical necessity argument for a power seat elevator. My private insurance carrier denied me. I spent months appealing only to receive the dreaded letter titled “Final Adverse Determination of Benefits.”
My insurance provider essentially told me that I had no more avenues for appeals, and I would have to pay nearly $1,500 out-of-pocket for a seat elevator, which has now greatly improved my independence and quality of life.
I am now able to raise myself up to cook food on the stove safely, brush my teeth at the sink, and safely transfer to my bed, among numerous other benefits. Most importantly, the ability to perform these daily functions independently reduces my risk of secondary complications, such as pressure sores and broken bones due to falls from transferring to and from uneven services.
Life was going to be tremendously more complicated without this addition. I have given myself the middle name, “Pleasantly Persistent.”
After several weeks I received a written letter from my insurance carrier explaining that they now “magically” found that my seat elevator was medically necessary for my diagnoses. Really? They even put a disturbing and common line in the letter stating, “This is not a precedent.” This enraged me!
Why did I have to fight so hard to survive while trying to thrive in life and make a difference in my advocacy work? I developed a laser focus on this issue and started reaching out to people, legislators, and organizations nationwide.
I soon realized this was a national issue and needed attention immediately.
Read the Rest on Christopher & Dana Reeve Foundation:
Https://blog.christopherreeve.org/en/cms-expands-coverage-of-power-seat-elevation-systems
When a Major Commercial Airline Damages your $30,000 Power Wheelchair – What Next?
If you are a power wheelchair user then you are probably cringing at the title of this article as there is a 50% chance if you fly this has happened to you. If you are not a wheelchair user, think about this:
How would you feel if the airline decided to take a baseball bat, however unintentionally, to break your legs after you get off a flight? Well, this metaphor is akin to what many of us wheelchair users feel like when we see our power wheelchairs (our legs) broken into pieces when departing off the plane down to the luggage carousel to pick up our metaphorical legs.
To say you would be irritated is a gross understatement.
Sadly, this happens way too often in the airline industry for a variety of reasons. In my humble opinion, I think it’s cheaper for major commercial airlines to pay for a few power wheelchairs throughout the year than train their staff properly, or rather the third-party contractors who they work with to deal with loading and unloading our wheelchairs. Let’s not even get into TSA and what they do with our chairs.
read more…ACCESSIBLE ZIPLINING IN COSTA RICA – Behind the scenes
I spent my 40th birthday with 5 incredible women in Costa Rica with Wheel the World global travel company and Il Viaggio local Costa Rica accessible travel company. It was bananas. I’m sure many of you have seen many of my posts.
When I decided to embark on an 11 zip line adventure in the middle of the rain forest and Arenal, Costa Rica off a volcano I didn’t really know what to expect. I could only find videos online of people actually ziplining, not behind the scenes of how you actually get a quadriplegic up a mountain and switch from zipline to zipline.
So, in true Ali fashion I have decided to make a series of videos over the coming months of different adventures behind the scene so all wheelchair users can get a better idea of what to expect if planning a trip.
A Profound Transformation – The Power of Moments
Something happened to me in Costa Rica. For the first time in 13 years since breaking my neck in 2010 I took a vacation for my 40th birthday with 6 incredible women who helped make this trip possible. I went on an adventure trip as I had become so accustomed to prior to my accident. I love the rain forest and I love the water. I found a beautiful accessible country with an incredible accessible travel agency to make my dreams come true.
It was an epic 16-day trip with ziplining to 11 different platforms, scuba diving for the first time in 14 years, narrowly escaping the heights of suspension bridges twisting and turning in the wind as I rolled my power wheelchair across, and so many other adventures. I was back. I felt like Ali again.
For the first 7 years after my accident, I pretty much lived in the hospital and traveled internationally for so many surgeries and secondary complications. Then I started figuring out how to navigate living my life with this disability. It took me a little longer than most.
read more…The Other Side of My “AUTHENTIC” Self – Behind the Scenes of being a C6 Quadriplegic
When most people work with me, professionally or in my advocacy life, they usually see a quadriplegic who is well dressed, makeup on, hair straightened, perfectly sitting upright in my wheelchair.
I work very hard and very long hours between my pro bono advocacy life and my professional corporate life. I absolutely love what I do in the world of Diversity, Equity, and Inclusion in the disability space, but it can take a lot out of me. A normal day consists of between 12 to 13 hours of work. You see, I don’t get government benefits due to my income limits and so I have to work full time.
The challenge I run into as a C6 quadriplegic with chronic 24/7 nerve pain burning my entire body, chronic cervical neck pain due to multiple spinal surgeries, and hypersensitivity on my paralyzed hands (“paws” as I call them) is that while my mind is running on 100% most of the time, my body does not always follow suit.
This presents a bit of a challenge. Each day I wake up at 5 AM in the morning, but 9 hours later my body is crying out to me to be kind to it and please help it. Over the years I have finally come up with a routine that works for me. It’s rather unconventional, but it’s my version of disability inclusion in my own life.
read more…