Just dread it.
It's not that she's a horrible person, in fact, most people just love her. They speak of her kindness and her thoughtfulness and her care and concern for other people. They suggest that there is a selflessness about her that they really admire.
I suppose that's all true.
To them.
Of course I see all those things about her. Before I became disabled I admired them, thought I should be more like her. Now, I still think that in many ways I should be.
But.
And it's a big but.
It feels very different being on the other side of her warmth and caring. Whenever I come into a room, and she is there. She practically bowls Joe over so that she can be a help to me. She inflicts care on me. I feel the intrusive nature, the needy nature of her actions. I'll turn my head to talk to someone and when I turn back there will be a cup of tea, a bowl of soup, a piece of cake, shoved into my face. We almost always meet at parties and social gatherings and when she and her help are there, my stomach falls.
People often tell me that I'm very negative about people's help and kindness. I don't think I am. I do need help. I do need kindness. But I only need them at my own discretion, not when people decide that I have no personal agency. Websters defines this as " the capacity, condition, or state of acting or of exerting power." To decide when I need help, what I need help for, how that help with be delivered and how I am supposed to respond to help unrequested, makes me someone different, someone moulded into an object, a thing, like a teddy bear being fed, or not by the whims of a child not on the wishes of the bear.
Help asked for, help given in response of a need I identify, I am so grateful for, like the woman who responded when I needed something that was just out of my reach.
Like the staff at the gym who help me 5 or 6 times a visit when I ask for help with equipment, with turning machines accessible, with adjusting the grips on the cable machines.
I need help from strangers.
I get it.
But do you. Help unrequested is something very different. I'm the acted upon.
"She means well."
I'm told.
But does she?
I've talked to her about it. Told her that if I ever need her help and she's there I'll ask her. She looks at me curiously.
Like a teddy bear that just spoke.
Thanks for this, Dave. I've only been dealing with a physical disability for a short time now, and I often find myself drowned in help I don't need. "Please don't disable me more than I already am." Has become my stock response. Some folks become quite offended, but most seem to get it after a couple repetitions and a gentle whack with a clue-by-four.
ReplyDeleteKevin Oclassen
Vermont
Dave I toatal get it and see it every day. I call these people "the mothers". They are well intentioned but dont realize the disrespect and smoothering they do. They take away the independence and right to learn, make mistakes and live how you want. I feel for you. As to being negative I think that some people just dont want to rock the boat or say the things that need to be said. You are the one to say these things. Unfortunately there is a lot of negativity people deal with when living with any disability.
ReplyDeleteWell said, Dave..and the previous commenters, too.
ReplyDeleteWith an incidental episode with a relative stranger, some responses will work well enough. the person that you have an ongoing but superficial relationship with is much harder - not enough depth of connection to risk the 'serious discussion' on boundaries but not so random that you can easily let it go. The dread of seeing the person only builds.
it's the bully in disguise of helper persona and it's such a slippery bully!
clairesmum
I have come to believe that people who behave like that desperately need the approval that their behaviour gets them from the non-disabled. They crave that confirmation that they are good people, that they are selfless and kind. There is nothing wrong with wanting to be thought of that way, except when you are trampling all over disabled people’s independence to get that approval. But they just don’t see it that way because this way of thinking turns the disabled person into an object, and objects don’t have thoughts or feelings. Whenever I meet this kind of person now, the first time they fuss over me I tell them I don’t need any help but if I do I will ask. If they keep fussing they get told that I don’t need any f**king help and would they just back the f**k off. I don’t much like swearing at people who are after all just trying to help but it is an very effective method seeing as the expletives do permeate that self-righteous bubble of what a good person they are being. It also has the secondary effect of them now seeing me as angry or unpleasant, and so don’t want to help me anymore! People who have to be told a third time get their toes run over.
ReplyDeleteI know I have been guilty of "mothering" which used to be done for everyone. As I get older and from reading your blog I find I am more aware of it. I am also very stubborn about what help I will accept and from whom. I am also much more aware of respecting the wishes of anyone else -- offer drinks but not getting them until you say yes, for example.
ReplyDeleteYou could hopefully find a job for her that keeps her well away from you. Thought of her doing something for Joe but that certainly wouldn't seem very nice to him.
Good luck at redirecting her.
Unwanted help is a constant factor if you have an obvious disability. Sometimes I run into someone who just won't take no for an answer, like the woman I met who wanted to hep me in the bathroom. There would not have been any room in there for her, she would have had to sit on my lap. It's not about not ever needing help, it's about the choice of when, how and who.
ReplyDelete