Last February, on the night before moving into our new apartment in Chicago, I slipped on a patch of ice. I landed on my back, in the same location where 14 years earlier I had spinal surgery that left me with 6 bolts holding my spine together. Later, I had a spinal cord stimulator implanted near the same spot.
The force of my fall jammed the stimulator into the surrounding tissue, where it became inflamed and embedded, causing me the worst, most sustained and most stressful pain of my life.
Six weeks after my fall I was bent over in the lobby of our building, waiting for the elevator with my service/support dog, Dylan, a 29-pound rescue dog who took well to training. I was bent over, leaning against the wall to reduce the pain, when a tall man entered the hallway and stood staring at me with malice. I thought nothing of it.
Within moments an elevator car opened directly opposite Dylan and me. As I slowly raised my torso the stern man bolted across the hall to get to the doorway before me.
As I tried to enter on the left side of the opening, he stepped in front of me with his arms stretched wide and growled, “Take the service elevator.”
I was in too much pain to explain myself, so I moved farther to the left, and as I stepped in he shoved me backwards off the car. Pain detonated in my back. In disbelief, I regained my balance and stepped back into the car, while recognizing my assaulter as the same guy who threatened me verbally weeks before on the same elevator.
Previously, he was simply nasty. At that time I explained to him that I was disabled and who Dylan was. I told him the condo association and I had agreed –- using the Americans with Disability Act as a guide — that I could ride any elevator that was available and was not compelled, as other able-bodied pet owners, to take the service elevators.
Except when my pain is running high, I do take the service elevators with Dylan.
When home, I was shaken by how vulnerable I was in such a confined space with a man willing to be violent. Because of my disabilities, I’m largely defenseless.
This encounter is an extreme of the many I’ve had on the elevators here with people only too happy to tell me I was on the wrong car. Each time I explained why I could be on the elevator with Dylan. Patient explanations generally end these confrontations.
This is among the more outrageous examples of prejudice and stereotyping of invisible disabilities. More common reactions of the able-bodied are usually confined to my use of handicapped parking spaces. Mostly it’s just hard stares or muttered accusations. I’ve even been questioned by a policeman.
Much has been done to change attitudes towards people who are handicapped with disabilities. But my focus here is on the attitudes of some able-bodied people towards the millions of us living with the hidden disability of pain.
I have no idea if the angry, intrusive responses I and others get is simply the prejudice of stereotyping by the able bodied or something more pernicious and not explainable by prejudice or ignorance alone.
I’m inclined to see this as a part of a larger reaction to what a growing number of people in our society feel about those they see as “gaming” the system; whether it’s welfare, food stamps or those collecting disability.
Of course, there are those who do game the system, who do defraud assistance programs. We’ve all seen news reports of a healthy looking guy climbing up and down a ladder, carrying heavy suitcases, or playing football while pulling down disability payments from his unsuspecting employer. But they are clearly in the minority and we will always have these slugs.
How does this relate to attitudes towards invisible disabilities? When I notice someone staring at me when I exit my car in a handicapped space, I could think that they are simply making sure that I deserve to use it, that I’m handicapped, and that they are doing a public service by being vigilant for the disabled who really need the space.
But my recent experience with my new fellow residents has led me to think that while this may be part of the reaction of the able-bodied, it isn’t the whole story.
I think much of the reaction emanates from the notion that I’m getting away with breaking the rules: I’m a scofflaw. Their anger towards me is often palpable. They think I’m getting something for nothing and, in the bargain, getting something I don’t deserve.
In this mix are accusations of lying; lying about my disability, about my need for Dylan, and my need at times for special treatment.
I try not to respond, especially if it is a healthy looking adult, because I’m afraid of precipitating a confrontation that may lead to my injury.
Those with invisible pain live with a strange duality. Our pain is invisible, but our intermittent need for special care is very visible and often provocatively so. The safest way to handle this is with patient friendliness, as if it is a teaching moment. But that can be difficult.
It is important for you, the able-bodied, to recognize us and our invisible pain. I would be so grateful if, when you see a confrontation like mine happening, you would step in and protect me or my brothers or sisters.
Who knows, you may need protection yourself someday, in an unknown future where, unfortunately, the invisible may become visible to you.
Mark Maginn lives in Chicago where he is a poet, writer and social justice activist. Mark suffers from chronic pain and was a longtime volunteer with the American Pain Foundation. His blog “Left Eye Blind” can be found here.
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.