One of the toughest parts of being disabled is having to interrupt other people’s seamless lives. People are minding their own business, drinking coffee, or doing work, or sleeping, and you’re all, “Excuse me… could you just help me [not spill this drink], [put on this coat which has either shrunk, or I’m more disabled], [hold this object which I can’t even remember why I’m carrying around]…Thanks.”
The worst is when someone is sleeping. Ask any wheelie; Hell hath no fury like an ablebodied woken from slumber to help you with your existence. As proof, I have piles of memories that involve yelling for my dad to wake the fuck up and help me pee, only I was 7 and “fuck” hadn’t joined my vocab yet. I’d scream and yell monotonously, and hopefully, eventually, dear old mom or dad would saunter in and save me from my bladder, half asleep and wishing their kid could take her own goddamn self to the toilet.
As far back as I know, I’ve felt horrible about this. I’d feel so relieved that I wouldn’t have to wet the bed for the 50th time that week, but simultaneously awful when I’d catch a glimpse of their tired faces. I’d often wonder if my dad was even awake, or just sleep walking (which, when you’re a kid as crazy as I was, can actually make you pee yourself from fear. Kinda counterproductive).
This past summer, my friend Andrew stayed at my place for a few days. He slept on my pullout…and for all who don’t know, Andrew and I are pretty similar, except he has a little more CP and a lot more gay than I do. On the first morning of his visit, I heard him stirring, and then a whispery, drawn-out “Krisssten” coming from his direction. I looked at my phone. It wasn’t even 6:30a.m. Yeah right.
“Kristeeeennnn.”I shoved my face into my pillow and knew I had to answer, I had to get up.
“I don’t even know if I can help you, Drew.” I said grumpily, and focused on dragging my spasmy self out bed. “One sec.”
I found my way to my wheelchair and Drew told me that he just needed help [rolling over]. We laughed for awhile about how said rolling would happen, but surprisingly, we figured it out–not without Drew giving his usual falsetto, “Cripples helping cripples!” pump-up, which I’m positive contributed to our success.
In the moments leading up to the roll, I felt the resentment I thought my parents had carried (whether real or perceived). I was annoyed that I had to move. Did he really need help right now? It was so early. Couldn’t he just wait?
And then I felt the pang of the little girl that woke her parents every night for 15 years. The one who always thought, “I’m sorry, I just need help with this one thing, and then I’ll be fine I promise. And it hurt. It hurts when we make other people’s simple physical needs about our inconvenience. It hurts knowing that the one needing the help so often carries the burden for something they cannot control.
I guess this a roundabout way of talking about the need to be more conscious of the price we put on helping others and being helped. When helping with physical (or emotional) needs, there’d ideally be no shame, no apologies, no unwavering guilt. But this will only happen in a world where we are aware of ourselves, and where help is free.
My idealism gets the best of me.