Several times on this trip I discovered that my “no,” even firmly said, held no power. This was my first trip, by plane, in my new wheelchair. I’m adapting to the chair, it’s quite a different ‘push’ than my old chair and I use different muscles in my arms and shoulders. This means that I a working a little harder, on inclines, as I develop the new stroke and increase the strength in those muscles. On a flat surface, I use very little strength, the thing flies.

This has meant that people do see me struggle a little bit more when I’m going up hill. Now to me it’s really important that I not take help. I HAVE to develop the strength. I HAVE to work at it until I’ve got it right. I HAVE TO. This is about my body, my future and my mobility. I don’t want to passively accept help when I can actively do it myself.

On the way to the gate at the airport yesterday I was asked, by someone coming from behind, if I wanted help as I pushed up and long, carpeted, incline. I said, ‘No, thanks,’ and suddenly I was grabbed and pushed. I screamed, ‘I said NO!’ and then watched a really angry person walk away.

That was one of six or seven times that happened over this week away. I’d say no and people would come at me anyway. I’d have to get a little aggressive, and that still wouldn’t work. My ‘no’ had no power. Living in a world without the power of ‘no’ is scary. When Joe would intervene, which he did several times, and say, ‘He’s okay,’ or ‘No he doesn’t need help.’ THEY WOULD LISTEN.

Joe wanted to always be behind me to protect me from those who assert their ‘yes’ over my ‘no’ but I asked him not to. I need to develop those muscles too. I need to be heard.

Why is a ‘no’ from a disabled person not equal to a ‘no’ from someone else?

I know that I’m seen as ‘unnecessarily brave’ .. how do I know that, I’ve been told that.

I know that I’m seen as ‘inspirational’ … I’ve been told that too.

I know that I’m seen as ‘denying the reality of my disability’ … I got a mini lecture as I tried to stop someone from touching me and my chair.

What I’m not seen as is powerful.

What I’m not seen as is capable.

What I’m not seen as is equal.

I teach people with intellectual disabilities to say ‘no’ to assert themselves. I did that on this trip. But now I’m thinking that maybe I have to revise the training. Maybe I have to be clear that ‘no’ is just one of many strategies. I do already teach what to do when ‘no’ doesn’t work but they all involve reporting to others in authority.

But if our ‘no’ doesn’t matter, it’s violation isn’t a crime.

Maybe that’s where it all begins.

I have some thinking and some curriculum changes to make.

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