I have been on a story collecting mission.  What’s really behind a story?  What makes a story successful, thought-provoking, empathetic, and above all passionate to move people in a way that they will not soon forget you! 

One of my dreams is to become a Tedx/Ted Speaker and I’ve been soaking up so much information by reading, listening to podcasts, joining speaking associations, taking specific storytelling courses, and watching countless Ted talks.  This is really just a life project of mine that I am so insanely and absolutely above the moon to the stars and back PASSIONATE ABOUT. 

I’m sure it’s not too tricky to figure out if you know me that I’m passionate about disability inclusion in every aspect of our society, the human experience, the workplace, etc.

I’ve been collecting stories from other wheelchair users around the country.  I’m preparing for a very targeted keynote speech and while I was preparing my presentation, I was getting bored just thinking about talking for an hour.  I had too many facts and figures.  An organization can hire me to work on strategic structures, processes, data, etc. However, when I am on stage, I need to inspire any audience to think about a change in perspective.  This will then lead to intent, actions, and most importantly, outcomes!

I stopped myself last week to really think about the following question:

“When I meet someone, what do I remember?”

Perhaps more importantly:

“With what I remembered, is that going to inspire me to take action at any level whether that’s in my personal life or professional?”

If there is something that really physically stands out about someone — I might remember them, but more than that … I WILL most certainly remember you by a story I was completely captivated by that you may have told me. 

There is, of course, an art and a science to being an amazing public speaker, but one thing I know for sure is you have to make it passionate, empathetic, and humanizing.  You have to make the audience feel what you feel.  It may be on a subject matter they are not even familiar with, but when you walk out of that room you just can’t stop thinking about them.  This actually happened to me with a gentleman who is now a good friend who was a Tedx speaker in Raleigh.  He didn’t just talk about his business, his accomplishments, or what he did, but about his experience growing up blind.  He told the most engaging, humorous, and thought-provoking stories.

I love to speak, about everything really.  I’m working very hard on becoming a much better listener these days to collect more stories because they inspire me with little nuggets of wisdom here and there.  I am diving into subject matters that really have nothing to do with disability from neuroscience to quantum physics to disability history to engineering to inclusive design, etc.  I’m on this track of insatiable curiosity and knowledge and I find myself attracted to audiobooks or digital books when the author catches me right in the beginning with an amazing story.

I’m told people find my personal story with disability captivating, but I’ve been really trying to hone in on specific messages about what I’m trying to convey with my story (depending on the audience).  Hundreds of folks I know who have had a life altering accident leaving their bodies paralyzed from the chest down have extremely powerful stories.  They don’t know always know how to convey those stories with words, but I love to help them or least share their stories with their permission.

What am I PASSIONATE About?

Each and every day, and I quite literally mean every day all day, I am so ridiculously passionate about disability.  This is a club anyone of us could join for any reason for any moment.  I am not just talking about severe life altering accidents, but the 80% or so of you with unseen disabilities.  There’s over 1 billion of us on the planet that we know of with disabilities and this could range from high blood pressure, diabetes, spinal cord injury, autoimmune diseases, heart disease, neurodiversity, mental health, just aging, the list goes on.

What specifically am I my passionate about at this very moment as I write this?  Well, I want all people with disabilities to have the most inclusive experience in life they can whether that be meaningful employment, physical access to their community, digital inclusion, the right health care, etc.

This is a pretty big mission.  More than I can chew off by myself for sure! I have been narrowing down different areas of inclusion that I’m more passionate on than others.  More folks than I can count with disabilities are having challenges finding meaningful employment to work how and when they would like that do not affect many of their government benefits in the United States.  A topic for another time as this is a professional project I work on with a handful of companies as well.

Life is about thriving, not just surviving.  However, so many of us with complex medical challenges requiring a multifaceted solution from our healthcare providers are quite literally getting left in the financial dust.  Our system is not strategically designed for the small percentage of us with costly medical requirements to always get what we need with respect to services, products, or pharmaceuticals.  I could chat about this topic in detail with data and solutions forever, but I want to you to think about this:

If you are very healthy and do not have a lot of medical needs you may not consciously think about that you are able to just get up in life, go to work, make an income, have a family, so on and so forth.  If we do not have our basic medical needs met, how are we supposed to live our lives? 

Let’s get a concrete example going here.  I have 3 friends at present who are waiting on the approval of a specialized wheelchair because their old wheelchairs are causing them pressure sores, debilitating muscle pain, and incredible like spasms.  They are getting put through the ringer with their health insurance appeals process.  All they want to do is go back to work.  They want to find meaning in their life, contribute back to society, enjoy free time with their families, and just “get on with it” as they say.

They can’t.  Their barrier to entry is our behemoth size commercial insurance companies dictating what is medically necessary and what is not.  They are essentially telling us how to live our lives.  We are not a piece of paper to be stamped as a denial.  Sadly, most don’t even appeal a denial and that’s what these insurance companies are banking on.  Many of these policymaking folks sit in their proverbial ivory tower with no representation from people with complex medical needs of all kinds weighing in on these outdated antiquated policies.

I am in a coalition right now fighting for Medicare to reclassify power seat elevator’s as medically necessary.  This coalition is built up of some of the smart and bright people I know and, yet, two years later we are still jumping through hoops.

Change takes time.  But, where does change really start? 

If you have a new idea and don’t have data or metrics to back it up, you have to convey to stakeholders you are speaking with that your dream, idea, passion, and vision is one worth taking a chance on.  New entrepreneurs do it all the time, but it may take them 50 times of failure before one person may say yes.

What keeps me up at night?

Each and every person unnecessarily suffering.  As I write this sentence, I think about in the old days how Ms. Universe would say all she wanted is “World Peace.”  Wouldn’t that be nice! Let’s start small or you can go big too. 

Let’s begin with what keeps you up at night and what steps, as micro-as they may be, will propel you to turn your intent to make change into an outcome.  Or, maybe you heard a story that stays with you makes you want to make a change. A meaningful one.  A personal one.  A Passionate one.

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