You Have the Right to Lose Your Rights

By Mia Maysack, PNN Columnist

After experiencing medical injustice and malpractice multiple times, I began advocating for myself and others who live in similarly painful ways.

It didn't take long to realize that the concept of "pain" is universal, but different for each of us. We all experience pain to varying degrees, but our perspectives differ. Each individual possesses an existence that is unique to them alone.

All that is to say that my advocacy efforts shifted away from "my" cause and instead became “ours.” It has continued evolving to the point where it is no longer solely fixated on healthcare, but instead acknowledges all systems (political, economic, social, cultural, etc.) and how they tie together and influence each other.

That's why I no longer identify specifically as a "patient advocate."  I lost patience with all the sh*t!  Now I'm just someone who believes in rights and liberation for all, understanding there are different ingredients in that recipe for each person.

The following is a recent example of a situation I experienced that connected different systems together – and not in a good way. There are far too many examples of things like it leading to a person's harm, hurt or worse. My aim is to make an illustration of the hypocrisy behind it and the hurdles it creates.

‘We Don’t Make the Laws’

On some days, I just cannot get outta bed. Other days, I may be able to take a little trip somewhere.  Why not enjoy different scenery, apart from the four walls that seem to close in on me?

While taking a drive, I passed police officers on two separate occasions. Although I thought nothing of it either time because I had no reason to, they pulled me over. When they approached the vehicle to request my license, I respectfully asked why this was happening. 

Their reply was: “Your tints."

As someone disabled by a neurological disorder that makes me very sensitive to light, tinted windows assist in making moments of normalcy possible for me. This amenity even has the approval of a world-renowned neurology department in one of the top teaching hospitals in the country, which happens to be located in my state. I provided the proof of that claim to the officers, and what happened next is where the system fails.

Although it was acknowledged that my tints are for a health issue, it was also explained to me that even with proper documentation, I'm still not legally allowed to have tinted windows on my car. I've had them for years and driven endless places without an issue, but now I was being told that I can’t have them, because dark windows can be a safety issue.  

“Driving isn't something I'm always able to do,” I protested. “The law is prohibiting a tool that I need and helps keep myself and others safe."

"We don't make the laws," the officers said.

I understand that. But I also took the opportunity to explain that people in positions of authority -- whether a cop, doctor or elected official -- are public service workers. That means they exist to aid, assist, support and contribute to the betterment of those they are in the position to serve: Us.

Tints are a petty example in the grand scheme of things, but they speak to a deeper issue of policies and regulations being put in place that do not benefit each individual on a case-by-case basis.

Simply put, the law does not get to dictate what’s best for our health. This is an issue I’ll continue addressing, perhaps even in court, because it’s difficult enough to survive without having your liberties threatened. 

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is a healthcare reform advocate and founder of Keepin’ Our Heads Up, a support network; Peace & Love, a life coaching practice; and Still We Rise, an organization that seeks to alleviate pain of all kinds.