DONATION LINK: https://helphopelive.org/campaign/20851/
Dearest Friends, Family, and Supporters!
For many of you that know me, as a C6 quadriplegic paralyzed from the chest down in a shallow water diving accident in 2010, swimming is the one activity in my life that reduces the chronic nerve pain throughout my entire body and allows me to get out of my wheelchair to swim independently.
Swimming not only helps with many of the physical secondary complications that arise from being paralyzed, but allows me the dignity, grace, independence to have one activity in my life that is the most freeing experience in my life.
After being humbly crowned Ms. Wheelchair America 2023 in August on the platform of health insurance advocacy I spend nearly 30% of my week giving back to the community to make our society more inclusive in addition to working a full-time job to cover a very expensive disability life for caregivers, health insurance costs, and much more as many of us with disabilities are unfortunately put in the challenging situation to navigate ourselves.
I love what I do and I live by two philosophies in life. Paying it forward and Human Kindness. I was extremely humbled to connect with 21 incredible wheelchair advocates around the country at the Ms. Wheelchair America competition. Each of these extraordinary women work each and every day, as many of us do, to push the limits of minimal accessibility standards within our country to create a more inclusive society for everyone.read more…
It starts with Awareness and Determination.
On the front of my pro bono advocacy life with respect to health insurance to advance disability inclusion for all …
I am honored to partner with VGM and Associates, the nation’s largest and most comprehensive Member Service-Organization for post-acute healthcare. Specifically working with their division called US Rehab, a membership network with over 1300 independent complex rehab providers.
I spent the last month writing an article on the importance of Complex Rehab Technology (think customize power and manual wheelchairs) and the challenges many of us are facing in the industry who use wheelchairs.
What was very cool is they inserted a video link inside the article with a segment from my time on Capitol Hill in September at our Congressional briefing urging Medicare to reclassify seat elevator’s and power standing wheelchairs as medically necessary.
The next project US Rehab and I are going to tackle is writing a comprehensive guide on how to get a wheelchair approved to be shared with their network over the next 4 months. A Herculean advocacy effort, but one that needs to be addressed immediately.
Let’s think about what health insurance means:
HEALTH = Body and mind
INSURANCE = Protection of body and mind
PROTECTION = Keeping you safe from dangers
There is a cost to everything in life. Health insurance is no different. Money talks.
As the Mafia says when you don’t pay them their protection money to save your corner shop before they make you “disappear:”
“IT’S NOT PERSONAL, IT’S BUSINESS”
Sadly, health insurance is no different. Think about it – when you’re denied a lifesaving cancer treatment because you don’t have the right health plan; money; or advocate behind you; you will get a denial letter stating something along the lines of:
“We regret to inform you, blah blah blah, your cancer treatment was denied due to our corporate medical policy and your health insurance plan not covering this specific treatment. You have the right to appeal, blah blah blah, we care about your patient rights …”
“It’s not personal, it’s business. You did not have enough money to pay for a top tier medical plan, we have a cheaper alternative that will likely kill you (try that first, but if it doesn’t kill you we may consider your treatment request ), you are such a small percentage of the population that we really don’t care, but we pretend to care. We’ve got your back if you pay for it.”
Let me reiterate, insurance is NO different to the Mafia. It’s a sad truth. It may be a bitter pill to swallow, but that’s, more often than not, in the landscape of health insurance in 2023 in United States of America the reality.
It comes down to Health Insurance Inclusion. At present, health insurance companies are operating with policies and procedures that are far outdated from decades ago. Health insurance plans are not created with inclusive policies in mind for those of us with significant, costly, and complex medical requirements. Further, these policies are not created to sustain so many of us with significant disabilities or healthcare needs with solutions on a lifelong basis.read more…
My father raised me with so many incredible quotes. Over the course of 2022 and throughout all of my wonderful successes and failures – this one in particular continues to drive me on a daily basis:
“Luck is the Residue of Design” – English Poet John Milton (1608 – 1674)
Essentially, things worthwhile generally just don’t happen. Luck is a fact, but nor should it be a factor. Good luck is what is left over after intelligence and effort have combined at their best. Negligence or indifference are usually reviewed from an unlucky seat. Really, luck can be attributed to planning and hard work, which can take thousands of hours to experience that “Luck.”
Life as a complete quadriplegic is no picnic. I’m sure anyone you know in a wheelchair will likely tell you the same thing, but that doesn’t mean we have to just accept the limitations accompanying a significant disability. Yes, we need accommodations, both physical and digital, but were just people. I know so many folks with seemingly insurmountable challenges and significant disabilities, but most of them don’t seem to let life knock them down. They just keep getting back up!
I remember one day, in particular, in 2017 when I was sitting at my computer day trading, not successfully I might add that day, and contemplating the macrocosm of my life. What did I have? Where was I going? Was I going to leave a mark on the world? At the time, I remember thinking “I work, I don’t have any disability network, I’m fighting health insurance companies on my own and not sharing my lessons, and I have just come out of 7 years straight of being in and out of hospitals trying to survive for my life.”read more…
Help me to support a great new friend named John McAleavy … Incredible human, passionate, driven, and fellow quadriplegic.
John has a very cool podcast called “Quad Cast” where he interviews people with disabilities with diverse wide-ranging stories.
I had the pleasure of being a guest on his podcast and he’s just truly delightful! He has three seasons presently for his podcast and some amazing guests to listen to!
Please be sure to follow him, listen to his podcast, and let’s all support one another beautiful life endeavors to build people up in this world!
Different strokes for different folks. A motto I live by in such a critical world surrounding us. We are so quick to make snap judgments on what we think is appropriate, what we agree with, what we are personally comfortable with, etc. We are shaped by our experiences, cultural upbringings, belief systems, and values we were raised with or developed in our adult lives.
This leads to so much conflict in our own selves, with people we care about, and within our own social constructs we create. As human beings we each have our own biases whether they’re unconscious or conscious and this leads to incredible friction in life.
Each and every day I have to check myself when I’m listening people’s stories, opinions, or thought processes. I stop and try to meaningfully put myself in the shoes of the person I’m speaking with in regards to their personal perspectives. It is only natural to have opinions and thoughts on different topics, but we too frequently close off our ability to think outside our own box of values and beliefs.
All this is to say I engaged in a Quirky experiment over the last several months because I was merely curious and didn’t want to judge. If I’m going to have a brand called the Quirky Quad with a tagline of “Normalizing Disability through Dark Humor and Determination,” I most certainly need to consistently question my own biases when presented with a new experience I may not be familiar with or necessarily comfortable with.read more…
Human nature is complicated, no doubt, like a Facebook relationship. When emotions come into the picture – logic just flies right out the door leading to so many unnecessary conflicts personally, professionally, and globally. We are all guilty of this.
As a quadriplegic with full-time help from caregivers, friends, and family I have learned to temper my emotions, whether this is healthy or not is up for debate, in order to keep people in my life who want to help me, be around me, and enjoy my company.
Why would you want to be in a job or help the family member if you do not enjoy their company or feel unappreciated? I certainly would not. However, on a personal level, this takes a tremendous amount of mental fortitude and restraint to keep an entire network of people in my life happy.
It really comes down to Maslow’s hierarchy of needs for many of us with significant physical mobility impairments requiring round-the-clock care. If we don’t have our basic needs met, we don’t have the emotional capacity to take on anything else. It’s almost as if many of us who do not have our basic needs met are transported back to the prehistoric time of cavemen where we are metaphorically fighting for our next meal for survival so to speak.read more…
What a fantastic event! I was invited by the Rotary club (Zones 33/34) to be a panelist on an incredibly insightful Diversity, Equity, and Inclusion Webinar in October with several other fantastic advocates around the globe.
It was truly the most well-rounded and insightful conversation I’ve had with so many powerhouse disability inclusion leaders!
The webinar starts about 7 minutes in to the video
Do you know all the general categories of disability and what they mean?
- Deaf / Hard of Hearing
- Mobility / Dexterity impairments
- (i.e. Wheelchair user, restricted movement, balance challenges, limb difference, tremor)
- Chronic Ailments
- (i.e. Diabetes, ALS, multiple sclerosis, heart conditions, epilepsy, chronic pain)
- Blind / Sight Loss
- Learning Difficulties
- (i.e. Dyslexia, Dyspraxia)
- Mental Health
- (i.e. Clinical depression, PTSD, Anxiety)
- (i.e. Autism spectrum, sensory disorder, ADHD)
- Age Related Disabilities
Whether you were born with a disability, acquired one throughout your life, have had a temporary disability due to a broken arm requiring special accommodations for a period of time, or are just getting older — I’m pretty sure everyone on the planet, at one time or another, has had to deal with hardships requiring specialized solutions to help you adapt to your life.
Really think critically about this. If you have had no exposure to disability and you suddenly break your leg, have a cast put on it, and have to use one of those little rolling scooter type bikes where you push with your good leg and put your cast leg on the little seat — you’re going to need special accommodations over the course of 6 to 12 weeks while your leg heals.read more…
Incredibly honored to be invited by United Spinal Advocacy Live with Annie Streit to be a returning guest to discuss my work as Ms. Wheelchair America, my work on promoting disability employment with Open Inclusion, and ongoing health insurance advocacy efforts.
We had such a wonderful interactive chat and a huge thank you Annie!
United Spinal is a second family to me and love working with so many incredible people in this disability space.
Watch on LinkedIn: https://www.linkedin.com/video/event/urn:li:ugcPost:6984147721905483776/