Sunday, June 10, 2018

Bright light, Dark Room: Let's Have a Discussion

Yesterday we went to see a movie, 'A Quiet Place' at a theatre near the hotel we are staying in. The place was old and ill designed. The wheelchair space at the very back, at great distance from a small screen, had no chairs for anyone without their own. The one wheelchair space at the front, we discovered when looking for a way to sit together, was beside a seat that had been ripped apart. The long push back up to the isolation area was steep and hard, I made it almost to the top but needed help for the last couple of feet.

So I sat beside Joe and we decided to just cope. Just before the movie started a mother and three children came into take their seats at the end of the row in front of where Joe was sitting. There were, mom, daughter, son, daughter arranged in their seats. They were surprisingly noisy just settling during the start of a movie that uses silence as a tool for story telling. But they did come to complete silence about 5 minutes in.

But.

There was a lot of movement. The son kept getting up and going to the seat at the end of Joe's row and directly behind his mother. Then, when things got scary, which came early and often, he'd scoot back to his seat between his sisters. Finally he settled for a long time at the end of Joe's row. He had a cell phone out, looking intently at the screen completely still, the stillness interspersed with rocking.

I hate the bright light of a cell phone in a theatre. I thought about saying something because I always do, 100% of the time, but I didn't. It seemed to me that he had some kind of cognitive difference and was using strategies to be able to stay in the theatre, watch the movie with his family, and enjoy all that comes with that. It was clear he was watching the movie because when the intensity built he'd be back in between his sisters. Every time.

To me the cell phone seemed to be like an assistive device for him to use, phone for him, wheelchair for me. Because of that, because of how it seemed to be used, I felt that I had no right to speak up. He had as much right to see the movie his way as I did mine.

Oddly, when talking to someone about this, I was told that I had lowered my expectation for him based on a perceived disability and that was doing him no favours. He needed, I was told, to learn how to be in public without disturbing others. A behaviour plan would probably help him enormously, they said.

I don't know. I don't think I lowered my expectations, I felt that I altered them. If he copes in a particular way, who am I to say that he can't use that strategy. I fight for MY access to public space, what if his cognitive ramp is the cell phone and a bit of rocking? Isn't accessibility defined differently by different people?

I don't know. But I do know there is strong opinion around this. I'd like to hear what you have to say about this, but please say it kindly ... go ahead, over to you.

4 comments:

Alicia Butcher Ehrhardt said...

It was kind of you to cut the kid some slack.

If his family has taken him out to events like this one, and were not making an attempt to modify his behavior (you can be sure they know about it), the assumption is that it is his way of coping (or he has useless parents). Maybe that WAS the least disruptive way they could be inclusive. Plus he got to watch the movie. His way.

I just wish they hadn't sat themselves where they bothered you and Joe - assuming they had any other choices. It's not really fair to assume other people who might be sensitive to the extra wiggling and light will be okay, especially in a movie theater.

clairesmum said...

I see Alicia's comment and mostly agree. I have a niece with a 'different' brain, and social settings were dreadful at some points.
It seems they did have choices of where to sit - but maybe this was a bit of the 'not seeing' of a WC user and an "old" man. (Being of similar age to you and Joe, I don't think you are old but i have become very familiar wth the invisibility that comes to people of a certain age.) I'd like to think maybe there was something about their choice of seats that mattered to the little boy.
And maybe too much analyzing is not helpful.
We always have the choice to be kind. And you know so very well what is is like to have a 'helpful' stranger give you unasked for information or assistance.

Second Summit said...

I very much appreciate your choice to allow him his coping without judgment or complaint. I notice that my own response to this story is modified by your opening remarks about the theater. It seems likely that they wanted to sit in the very back to avoid disturbing other people ... and landed in front of you only because that's where the wheelchair seating had been placed.

I think I would have liked this better if the family had apologized for sitting so near in front and possibly blocking your view, especially if they knew ahead of time that this child would be standing up and changing seats frequently, as well as using the lighted cellphone.

When he is a bit older perhaps he can modify his coping strategies, or perhaps make his own acknowledgements when he is about to do something that might inconvenience a stranger. But with a child? I think your choice was the right one.

Karry Carr said...

My son has autism and uses his cell phone when he needs to escape over stimulation. I imagine that this is what this boy was doing. Thank you for being understanding; I think you did the right thing.