By Ali Ingresoll

Real Life Situation #1

Picture this  – a small village in North Western China with dirt roads, open-air markets, dust swirling around the air, patchwork houses if you can call them that, and hundreds of locals bustling around this seemingly unassuming town, which, to the outside world, looked as if it had not technologically advanced in over 100 years.

22 years ago as a teenager, excited at the prospect of exploring the road less traveled, I embarked on a journey I had not necessarily bargained for.  When I moved to China after high school I was eager to explore towns and villages where the people had likely never seen a foreigner in their life, engage in new customs, explore unfamiliar cultures, and advance my understanding of the unknown.

On one brisk Thursday morning, I ventured out to the town’s open-air market where they sold whales blood, Chinese broccoli, chicken feet, fish you could directly pick out of a water tank with your bare hands, and so many more unusual delicacies that many would shy away from trying.  I felt free, brave, and daring.  Little did I know what was about to unfold …

As I was quite literally watching a turtle scurry over the dirt roads while picking up a vegetable I had never seen before, in the blink of an eye I was on the ground with something very heavy on top of me, and the only sound I had heard was “BAMMM.”

I was so confused. I did not know what was going on.  As I opened my eyes to gauge my surroundings to figure out what had happened it only took me a moment to realize there was a human being laying on top of me.  My clothes were soaked in blood, I was in shock, and I could not discern what was happening.  It turned out a human being was laying on top of me.  I made quick work of rolling this person off of me as I was listening to the screams surrounding me in a 360° direction.

In very short order I had a policeman, or at least some official with a gun in his hand, pick me up and told me to go in a very broken Chinese dialect.  I looked like Carrie at the prom with pigs blood dumped all over her.  People were screaming and yelling, and the best I could make out they were saying “you shot him, you shot him.”  I remember looking down at the gunshot gentlemen, still alive at the time and I hope today, with a broken bag of all sorts of food rolling around the ground. 

I still don’t quite know what happened to this day, but from the best I can make out this gentleman, who was dressed in rags, was stealing food and was shot in the street for doing so.  As I headed back to this little hole in the wall hotel, if you can call it that, covered in gun splattered blood I was in complete shock.  There were no sirens or ambulances — had this gentleman really been shot for stealing and was this a standard practice in the outskirts of Chinese villages all those years ago?

Forget about equity, equality and due process — all concepts completely foreign to that part of the country due to China being a Communist country.  I don’t know what happened to that gentlemen only that I was told to not speak of what I’d seen and leave.  Naturally, I did so even though my curiosity as to what had transpired that day still plagues me.

Why bring this up? …  You’ll see in a moment.

Real Life Situation #2

Last year in 2021 as I was rolling down the street with my husband in downtown Raleigh, North Carolina I was stopped dead in my tracks.  The memories of what had happened to me in China came flooding back when they saw a group of individuals on a sidewalk with a loudspeaker and signs chanting “F**k America.”  They were protesting the inequality amongst different races in the United States.

The thoughts that were swirling around my head in that moment — “I wonder if this gentleman appreciates that he has the right to free speech, that he is not getting arrested, or killed for publicly speaking out?”

He is, within his rights, to protest anything he wants to.  I am curious if he realized how lucky he is today to have the ability to protest because of the countless individuals before him who put their lives quite literally on the ground to fight for free speech, equality, and equity in this country?  I then got a little bit angry as I was thinking about all of the ways he could have been promoting change instead of simply yelling on the sidewalk week in and week out as I have seen since him do.  That’s not my place though.  We live in a country with many rights, yet many inequities all at the same time.

Finally, did he realize how fortunate he was to even be allowed to have opinion without public prosecution?

This is where I’m going …

Perspective

Over the last two centuries hundreds of thousands if not millions of people have fought for the rights we have today and, oftentimes, have given their lives in pursuit of the rights we have.

Of course we still do not live, in the United States anyway, in an equitable and equal society yet.  However, and this is a big however, can we not take a moment while trying to achieve systemic change to appreciate what we have accomplished so far?  Naturally we have to keep pushing boundaries as we live in a modern day technological society to advance change, and consistently work toward further basic and more nuanced rights.

Growing up internationally and experiencing so many different cultures, as it relates to equality and equity, I think it’s important to take pause of what we have accomplished in this country so far.  We have so many more rights as compared to other human beings in Third World countries where being beaten and raped is a daily ritual without consequence. 

I’m not saying we stop making progress, but as we work towards pushing the boundaries of what is possible in creating a more accepting nation of race, gender, disability, and sexual preference we absolutely must also celebrate what we have accomplished to date.

With that said, I appreciate the fact, as a person with a disability, that I even have the right to, for example, submit an insurance appeals claim for equipment that I deem is medically necessary to not only survive in life, but to thrive.  So many people I know personally around the globe are not nearly as fortunate.  I have a friend in Africa who is a paraplegic who is simply trying to raise several hundred dollars to try to go to university and who spent the first half of his life with his family carrying him on his back because he did not have access to a simple wheelchair.

I’m working with a coalition of individuals to convince Medicare that a seat elevator should be a covered component of a power wheelchair because people with disabilities are not all created equal.  It’s a matter of health equity, not equality. 

This leads me into my next point …

Equality vs. Equity

The best metaphor I can think to offer when trying to help people understand the difference between equality and equity is the following:

To those with vision impairments it is a graphic of a standard bicycle trying to accommodate a child, a woman, a very tall man, and a person in a wheelchair.  This represents equality.  We are all equal and have the right to ride a bike.  However, clearly a person in a wheelchair cannot ride a standard two wheeled bicycle.

In the image below representing Equity, the child has a small bike, the woman is on a standard bike, the taller gentleman has a much larger bike, and the person in a wheelchair has an accessible bike with three wheels so they can hand cycle.

It’s a beautiful graphic representing the fact that while we all may be entitled to a bike, a standard bike is not going to meet the needs of everyone because each of us each have our own needs.  We are different and many of us need specialized solutions to the challenges we are faced with.

My Personal Mission

I need to restate this again.  I appreciate the fact that each of us in the disability community who live with paralysis are entitled, in the United States, to have a wheelchair.  However, as a C6 quadriplegic I am not going to get very far with a standard non-specialized wheelchair because it will lead to pressure sores, muscle atrophy, secondary complications, etc.  I have specialized needs as a quadriplegic as compared to say a paraplegic who has full use of their arms and hands.

This is really about Health Equity, not Equality.  On a yearly basis I am constantly fighting with health insurance companies or helping friends to prove the medical necessity of having specialized equipment, in this case a personalized power or manual wheelchair called Complex Rehab Technology, approved through the health insurance process.

We would not have equal rights in this country today or the idea of equity if it had not been for the previous generation of individuals with special needs pushing the boundaries of what is possible.

I am incredibly fortunate in my life to be in a position in this country today, as a person with a disability, who is reaping the hard earned benefits of slowly being less discriminated against, but it takes people like you and me to keep pushing the envelope while simultaneously appreciating what we do have.  It’s not particularly helpful to just complain about the situation, but to take action.  Many don’t have the opportunity to take large actions, but they can take seemingly small actions that may have a very large impact.  It could be as simple as educating your ignorant neighbor on the needs of the disability community as an example. 

You never know who you’re going to meet in life, how they may affect your life or you theirs, or what will come of that.

This I do know, and I am not Einstein coming up with a new Theory of Relativity, but in-action is certainly going to lead to no action whatsoever.

Fight for your rights, fight for equality, fight for equity – BUT, take a few moments of each day or each week to also appreciate how far we have come.  I preface this last statement by saying there always exceptions to this — Acknowledge the fact that you are not going to get shot in the street for speaking your mind or stealing vegetables in a Chinese market. Perspective is key to everything! 

In my mind, the ingredient for success in making any kind of lasting change is the combination of curiosity and passion.

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Ali Ingresoll is a professional, disability advocate, mentor, and a ferociously “Pleasantly Persistent” woman with the motto: “NO is just a starting negotiation point.” She was recently crowned MS. WHEELCHAIR NORTH CAROLINA 2022.

You can support Ali and her fundraiser here:

https://www.gofundme.com/f/ms-wheelchair-america-advocacy-competition-2022

To learn more about her visit https://quirkyquad.com/about/