Let’s get “Quirky” – a Profitable Experience and a Different Perspective
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…There are “100” Different Ways You Could Have Said That – WORDS MATTER
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…Rotary Club 2022 Summit – Diversity, Equity, and Inclusion Webinar
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
One Thing is Certain in Life – You will Have a Disability
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)
- Neurodiverse
- (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…United Spinal Association – Advocacy Live Podcast
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 Facebook: https://www.facebook.com/UnitedSpinalAssociationAdvocacyNetwork/videos/877624949791785
Watch on LinkedIn: https://www.linkedin.com/video/event/urn:li:ugcPost:6984147721905483776/
PARTNERSHIP WITH NORTH CAROLINA STATE TREASURER — Dale Folwell
I am incredibly honored to be partnering with Treasurer Folwell and his entire team on an incredibly important non-partisan disability issue regarding raising the age of ABLE accounts.
I attended the famous North Carolina State Fair where I worked with the treasurer’s entire team to spread Awareness on this issue and even got to sneak in a turkey leg! So elegant with the crown 
The Treasurer and I will be hosting a video event together in December next!
WHAT IS AN ABLE ACCOUNT & WHY DOES IT MATTER TO PEOPLE WITH DISABILITIES?
read more…REAL Costs for Private Health Insurance – You May Want to Sit Down for This One!
I spent some time diving into how expensive it is to be paralyzed, but I wanted to take some time to dissect some of the true costs in the private health insurance market.
Many with significant mobility impairments are in the boat of being tied to government benefits such as Medicare and Medicaid. Unfortunately, I do not fall into this category of qualifying for such government aid as I make too much money in my life. At first glance, many might think this is advantageous because I do make a decent living, but when you break down life costs in addition to health insurance costs when I am paying for every single dollar out-of-pocket – life does not appear as quite as rosy.
This puts many with disabilities in quite a conundrum. Do you take the leap in life to work a full-time job and give up your government benefits when on any given day a medical emergency can arise or life with a disability can simply take you by surprise to simply knock you out of the game?
Ms. Wheelchair America 2023 Life – 1 Month Later
It’s been about a month since I was humbly crowned Ms. Wheelchair America 2023. I’m still reminiscing on the incredible journey that led me to spending an entire week with, at the time, 21 of my competitors, but who are now all great friends. When I was driving to the competition all I could think about was making sure I maintain my game face because, after all, this is a competition.
Unbeknownst to me at the time, 7 days later I left the competition feeling incredibly humbled and honored to have spent a week with such amazing women around the country who are all engaged in advocacy projects with the mission of making the world just a little bit more inclusive.
I know I took home the title, and I plan to advocate on behalf everyone with disabilities for years to come, but the competition really was about camaraderie. I built relationships with women in such a short period of time that I know will last a lifetime. It’s an experience that profoundly changes you from within.
On that note, I spent the first week after the competition trying to garner as much media attention as I could on what Ms. Wheelchair America stands for. I then proceeded to critically think about how to spend the next 365 days of my life in order to affect the greatest amount of change with the title. I spent hours sitting out by the little stream in my community pondering on the best use of my time. I have a year of travel, speaking engagements, and advocacy partnerships already underway.
read more…Life Possible with Karen Roy Podcast
Sponsored by Numotion
My dear friend, Karen Roy, was gracious enough to host a beautiful podcast with Billy Warden and myself on our outing where I took Billy for a night on the town. I offered Billy a different perspective on being a wheelchair user by fitting him with a Permobil F3 power wheelchair and taping his hands up to make little “paws” as my hands are as a C6 quadriplegic.
Naturally, I cannot offer any able-bodied person a true experience of what it’s like to be a quadriplegic, but I did have the ability to offer him a perspective shift for a day a few of the challenges many of us wheelchair users and quadriplegics go through on a regular basis.
As Ms. Wheelchair America 2023 I am constantly looking to push boundaries with respect to inclusion, but also focus heavily on changing people’s perspectives in many arenas in life. Karen Roy, Ms. Wheelchair America 2019 was such an inspiration for me running as we shared similar platforms with respect to health insurance, adaptive exercise equipment, and medically necessary equipment.
