Saturday, June 02, 2018

no status

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.


clairesmum said...

Interesting that this problem has emerged again with the new chair...the ability to use your own words effectively is a 'super power' that doesn't come naturally to anyone who sometimes does need to rely on helper.
And using your own words first, and involving a helper when you need to, gives a person 2 tools to use.

As an aside - those who have always been able to be the helper have a strong 'no' response to offers of help..even as they suffer much more physical distress by insisting on complete independence.

You have taught me to pay good attention to body language and words, and mostly helped me to not 'offer' more than once. Working on observing the struggle without judgement - without turning away or displaying judgement on my face or body language, and remaining compassionate. thanks.

Anne Finger said...

I got my latest wheelchair with fold-down handles precisely to deal with the problem of people grabbing me from behind. Most of the time, this helps, although sometimes people start to push directly on my back. I do usually say, "Thank you for offering," --when help is actually offered. The most difficult times are when help isn't offered, but declared: "I'll get that for you." I wish there would be public service announcements about how to offer help, and accept help being declined. One of my memories is asking another customer at a coffee counter if she could hand me a napkin. She went into such a helper's rhapsody--as if she were going to be lifted immediately into heaven for her good deed. I'm sitting there thinking, "It's a fucking napkin, come on."

Girl on wheels said...

I think they genuinely don’t hear our no, they are too far off in their little ‘helpful hero’ fantasy. In their head they are working out how to tell the story of how they helped that poor disabled person out and how everyone is going to tell them what a wonderful considerate person they are. Basically they are seeing themselves in tights and a cape, and adoring the way that makes them feel. And then we dare take that feeling from them, how dare we rip their hero scenario from their heads and make them feel bad about it.

This is why I also got fold down handles on my new chair, and why my partner 100% supported that decision even if it makes him pushing me more difficult for him. Now I get prior warning that someone is going to violate my bodily autonomy because they give themselves away fumbling with putting the handles up. As Anne said, sometimes people do just push directly on my back but most people are more aware that isn’t ok. In my old chair when people used to push me a lot, I would grab hold of my wheels as hard as I could to stop them moving. It would sometimes take the person half a minute to work out what was happening because how could a disabled person be stronger than them? Whilst they were baffled at my non-movement I would wrench my chair out of their grip, spin around and tell them off. It never ended well because I destroyed their heroic moment but I have to believe they would think twice before they did it again. Fortunately in my new power assisted wheelchair, I’m generally rolling along so fast no one could grab me!

Morgan Fyfe-Williams said...

I feel ya.

MelissaG said...

As one grows in the ways we need to, our success comes from the way we handle the challenges which are presented and what lesson about ourself we must explore. I offer you "deflection". When I was a transport aide in a skilled nursing facility, often I would ask if the person needed help, because sometimes they were not aware they could not do it on their own as many of the residents had failing faculties. Often those were visible given the fact that residents were aged and frail. Even if I knew they needed assistance I would ask first, because as a person with disability myself, I presume competence of the person, and asking first preserves dignity. If I were in your shoes/tires, one thing that may help is to say "But I am in training" immediately after the question is asked. It will deflect the attention enough for them to hear you because it is not what is expected. This recently has been something of a tactic I have used when taking my service animal in drive-throughs lately. He is the cutest thing, a little Maltese-Poodle mix, but is getting up there in age and does not have many teeth left, so when the Drive-through worker asks if he would like a dog biscuit, instead of saying "no" which makes me look like a mean person (because who would deny such a cute being a treat?), I say "but can you chew it for him" and instead turns the conversation to his own issue not mine. I thank you for your candor and letting us follow along with your journey as a differently mobile person.