Chronic illnesses are often invisible. Many people can look normal by talking and walking. For all you know, it's taking all of their energy to do that. They could be hiding it behind the smiles and laughs.
This edition of "Chronically Writing" looks to address that, by example actually.
This incident happened a few weeks ago. Brian and I took Calvin to Brickfest, which was being held at the CT Convention Center in Hartford. We planned to take the bus and then walk to the destination, which can be far too much for me. I chose to use my walker (which can convert into a wheelchair) and off we went. Every time we use public transportation, though, I feel self-conscious and have to make room for people. It was no different that day. There were times I had to lift the walker in order for someone to pass with their carts or walkers. Folding it makes it smaller, but not by much.
There were some accommodations on the buses. There was only so much space in the front, though, where the seating was meant for the handicapped or the elderly. Being a Saturday morning, there were a lot of elderly, coming out to shop. On the Fastrak bus going to the capital, it was no different. I was sitting in the rear, where the bike racks were. That was the most space I could get with the walker and still watch my child and be with my husband.
Just as we got off near the Wadsworth, it got better to move with the walker. But as soon as we got into the Convention Center, checked in, and saw the displays, it was super obvious that this was made with small kids in mind. I get it, that was part of the show. But parents were in line too, and I am the mother of a special needs child. How was I supposed to fit the walker through aisles and displays so tiny that several people have to step aside for me to come in?
Misunderstanding ensued, even on my part.
The first (of many) came at a play station. Kids were at tables, making pictures out of Legos. Calvin wanted to do it and we went in line. The line was getting too long for me and I was getting tired. Worse, kids were running around me and bumping into me and the walker. I was getting nervous that one of them would trip and tried to keep moving away.
This continued when a spot was supposed to be opened for us. A family kept invading the small corner we were given, to the point where there was no space for me to sit and make a Lego design, even after asking them to move several times. I gave up my Lego plate and told my hubby to take Calvin in, there was no way for me to do the activity. He understood.
So, I sat it out and watched my son design.
As a parent, you know how it feels to watch your child and not be able to participate?
It made me cry a few tears.
A gentleman who worked for the company cleared a path for me once. He said his wife was handicapped and he understood. Soon, the same thing happened. I was soon catching the wheels of the walker against the boards holding the Lego designs because everyone crowded around me and demanded that I move. The biggest offender was the same family whose kids did not move in the first place.
I was not gracious. I mean, after asking someone to move and they don't, and then they ask you to move? When you have nowhere to go except against a wall? I wanted to cry again. I lashed out like a wounded lion instead.
But then, I remembered that this was not about me, it was about my son.
I made the best out of the small slights. At our break, the cafe tables were high enough that I almost could not reach sitting on the wheelchair side of the walker. Children ran into me or the walker countless more times. When I escaped a specific child because he was hurting me by running into me hard, his mother accused me of thinking her son was "contagious".
No, ma'am, he was not. He was a sweet kid who did not understand boundaries. And I was not calling you a bad parent either.
I decided not to argue with anybody. This was not about me, remember. I did manage to squeeze in for a few activities. Displays of Legos laid scattered across the floor. Not to mention, my son was psyched having a picture with the Lego Masters from Season 1. He has signed Lego bricks and his VIP badge.
Again, all of it with a lot of pushing into small spaces.
The joy on Calvin's face made the trip more bearable.
I could have counted my annoyance at lifting the walker for someone. I could have been sighing over the rush to take the next bus, waiting until the stampede had subsided. There were so many people who could have considered empathy for their fellow neighbor and I could have judged them all.
But that would put me on the same level as they were.
I am a person of stories, not the almighty power that looks down.
I had more tact. When we got home, I sent an email to the corporation who heads Brickfest. I was kinder than I was in public. They acknowledged receipt and review, which was what I expected.
I remember that my father was disabled himself. He taught me many things, most of them what not to be. One of them was that I could still be angry at the system and somehow find happiness in spending time with my family.
Please remember that not everyone has the same needs. The world has all creeds, colors, abilities and needs. Society should not have to have second thoughts about wider aisles, ramps, and tables low enough for wheelchairs. Let's address all of them without having the one making a "special case".
I have learned a lot about disability and ablism from a Facebook page, Misa on Wheels. Please check this page out. Also, leave everything you know about disability at the door. This is a different world and I hope you can understand it.
Oh, and my Lego guy's name is Levi, by the way.
Namaste!
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