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.
What a conversation for a child or anyone for that matter to overhear...
I recall back, 20 years ago... being a young lady of 20 who had recently undergone surgery on my upper and lower jaws. (I had both jokes broken and bone graphed from my hip and placed into my upper jaw for reconstruction purposes.)
My mouth was wired shut for three months and I walked with a different gait for a few weeks due to my hip. Given that my mouth was wired I was not easily understood, therefore I carried a child's erasable sketch board.
I was unable to drive, unable to be alone, unable to eat what everyone else was eating. For the first bit- I required support to go to the washroom, and shower... for fear I might take a weak spell.
I had to rely on family and friends for everything. People stared at me, children were curious as to why this grown up was carrying around a kids toy... My mother who was my main Support Person, was met with those nods of pity... in waiting rooms and in malls... people looked and whispered. I HATED IT!!!! Being an independent person, with my own car and a pretty good social life... I was at the mercy of others and I didn't like how that felt. (It was only for 3 months)but I can remember it like it was yesterday. Reflecting back, I am happy to have had the experience, it lends me a perspective that not all Support Workers have- the perspective of the person whose communication is not easily understood, who takes a little longer to move, who wants so terribly to have independence but instead they are told NO!
I am also the parent of a child affected by a disability. I chose to shine the light on the positive attributes my child has. I don't pity her, and I surely don't pity myself for being her mother.
Long story short...I can see where you are coming from Dave :)
Once again Dave you flip the world as we know it upside down and offer us a glimpse of our own vulnerabilities - both body and soul. Your words are like mirrors
I don't mind the short-term "can I reach that for you?" help, but #,#,#, I HATE having to depend on a home aide to help keep my house clean, or do things for us (both of us are significantly disabled).
I resent the loss of privacy that someone coming into my home to clean and care for us entails. I've thought about this a lot. We've had help before, and we could *use* it now, but I can't bear it.
There may be a time when I can't avoid it any longer, but for now I resist.
I'm so very sorry for the daughter who had to hear that--it was obviously devastating. But I'm not without sympathy for the mom, too. Yes, she vented in the wrong place at the wrong time. In the midst of her work as carer, she forgot to ensure that SHE had ongoing support as well. Along with her carer role she needed to make sure that someone cared for her as well, providing some respite from giving care. She probably thought that it all fell to her as a mother (as it so often does), but that should not have been the default.
Being a support person is hard. It cannot be a 24/7 proposition, or it negatively impacts both giver and recipient.
Very well said. Our team tries to model basics such as please and thank you, but we do not demand it from the people we support. It is so hard to explain that it is our job to offer support graciously and explain that it is the person supported's choice to express gratitude. We are paid to do our job. The people we support know that. They should not expect less than for us to do our job graciously and we should not expect more than our paycheck. Anything more is appreciated, but not expected. I know this does not hold true for the community as a whole but I understand the need to just be sometimes and not have to be thankful.
One of the most frustrating aspects of living with a visible, recognized disability* is that, often, people will put me in a category of "receiver" and simply refuse any offer of help I give. For example, when I was a college student, if I saw someone struggling with an armload of books, who I knew is going to the same building I am, and I suggested that they can put their books in the basket on the back of my chair, they would respond with: "Oh, no! I don't want to cause you any more trouble!" ... not realizing that to graciously accept an offer is to give the gift of dignity and equality.
*(I understand that those with invisible disabilities have their own, equal frustrations)
The power often lies in attitude. The givers and the receivers. If one feels unworthy to receive an action, then the attitude will reflect that. Just because someone needs something doesn't mean they are "needy". At times our pride gets in the way.
As a unwanted child myself, I can relate to the hurt felt by the dawning realization that you are not loved, not wanted - such an important part of our being. As an adult, I make sure to include.
The thing that really frustrates me about the concept of help is the assumption that I need it when I don't. People tend to get angry when I say no thank you! I don't get that! I'm polite and just saying no thanks.....then of course there is the people who insist on not respecting your answer and grab you or your groceries anyway. Then it's my turn to get angry. They don't get it.
"For example, when I was a college student, if I saw someone struggling with an armload of books, who I knew is going to the same building I am, and I suggested that they can put their books in the basket on the back of my chair, they would respond with: "Oh, no! I don't want to cause you any more trouble!" ... not realizing that to graciously accept an offer is to give the gift of dignity and equality."
I'm not so silly! One of my close friends drives a scooter with a basket on it, and she often lets me put my stuff in it if we're going to the same place. Even if I wasn't a good friend of her, I'd gladly accept if she offered to help me carry stuff. I mean, a bit of extra weight is less noticeable to someone in a chair than someone walking.
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