Sometimes the hardest thing about needing help is needing help. After years of being in the role of 'helper' I think I can say, with some authority, that the burden of needing help is greater than the burden of giving it. Giving help puts one in a position of 'gifting', giving help elevates, even those paid to do it, into the position of benefactor, giving help gives power. I've written a fair bit over the years about power and the fact that those in support providing roles need to be ever vigilant in their exercise of that power. But, the message behind that is that support providers get to be vigilant because they get to be powerful. Managing power begins, simply, with the fact that you have power in the first place.
Living with a disability means, for me, needing help. I think one of the reasons that people fear disability is just that simple fact. Needing something from someone else means entering into a relationship dependent upon, even when it's paid for, the good will of another. It means that every time one receives help - even graciously given - there is a relief that the asking's been done, the help's been given and, if you haven't been diminished in the process, you can simply move on.
For a long time, at work, when I'd leave my office to go to a meeting in the board room, I'd leave my tea on my desk. I couldn't carry it, I couldn't ask someone to take it for me, I'd just go without. Now, I always ask, people always help, it's never a problem. Occasionally, though, I'd wonder if people did it because they were nice, because I was a director, because they felt they had to, because they didn't mind ... the 'because' part of it sometimes would drive me to distraction. I knew I was over thinking something simple, but at the same time, it's not so simple. They get to manage their power while I am constantly learning to manage my powerlessness - these are very different things.
"Here, let me get that for you."
"Don't mind at all, really don't mind."
"No thanks needed."
They get to say those things.
I get to say ...
"Thank you very much."
"How very kind."
It's better to give than receive is true because giving means something much different than receiving. The giver determines the gift. The giver controls the moment. The giver gets even while the gift gives.
She was crying. Hard. She had been referred for self injury. I had been working with her for about six months when one day we found ourselves simply talking. She told me of a moment, a hard, hard, moment, when she had heard her mother, on the phone, talking about how hard it was to have a daughter with a disability. How much work it was. How frustrating it was. How tiring the effort was. "I thought she didn't mind," she said through tears, "I thought she didn't mind helping me. I didn't know she hated it."
I've thought about that a lot over the years. I'm guessing, and of course I'm only guessing, that her mom was having a moment of her own vulnerability and was expressing that on the phone. I'm guessing that mom 'didn't mind' as much as it may have sounded at the time.
But I get how much that hurt.
Needing help at home.
Needing help at work.
Needing help at all.
And six years into living with needing, I'm still learning what that is.