“There is no fixed reality, only objects in contrast.”—17, The Flamethrowers
I’m writing this because if I don’t, no one will understand. I’m writing this because my dad is passed out on the couch, his eye lids doing that fluttery thing that can only mean REM sleep—which means transportation to bed is currently on hold until further notice.
As of lately, I have been asked multiple times how being disabled has affected my life. People have creative ways of phrasing it, someone who I’d just met asked, “You have CP[…] Does that make life hard?:(“ I was in a detached mood and replied, “Does having blue eyes make life hard? It just is.”
But the truth is, disability is an ongoing journey to acceptance. A major factor contributing to the push-pull relationship I have with acceptance is the intermittent courtship I’ve got going with independence.
The factor that spurred all this blabbity hoopla is my relocation back home for the holidays. In terms of change in lack of independence, here’s what that means for me(try and put yourself in my shoes if you’re feeling extra empathetic today):
– waking up when dear old dad wakes
– showering if dear papa is on schedule/awake enough/ I’m starting to smell.
– Waiting, in a rolly office chair, for my ever-older father to feel strong and lift me down two flights of stairs to my wheelchair. The stairs are steep, and manage to invoke prayers I didn’t know I still had in me.
– Waiting to pee/not peeing by myself, because my kid-size wheelchair is too big to fit in either of the two bathrooms
– Nakedness in front of my parents. Not that this matters, except that on some level my dignity feels it.
– Complete trust, in everyone for everything I need help with, always (because, what choice is there?).
Make no mistake, this is not a rip on my family or their way of helping me. They try really hard at times, and to bitch about them would just be disrespectful—not to mention biting the hand that fed me for many years. The issues I have around my dance with independence are mine alone, and have little to do with my parents attitudes toward me.
That said, I do believe that dependence on others, and some of the extensions of those needs—like being naked in front of my dad at 26—does have a direct effect on the development of who I am. Think about it. If you’re unable to get yourself dressed, and have never had that ability…what does that do to how you see yourself in relation to others/the world/your self worth?
Earlier this week, my kid sister, tired of Barbies and Frosty the Snowman, changed her dress three times in one day—from sparkly silver winter dress, to Christmas coloured checkered dress, to Easter dress. By the time she had the third dress on, I asked her if she knew we’re still doing Christmas. She giggled, shrugged and stuck her thumb in her mouth..
I’m not just writing about the dress-switch because my little step sister is cuter than 5 puppies with squishy faces, but also because I think her changing dresses are an assertion of self. Yeah, you’re right, it’s probably also because she can’t decide what pretty princess she wants to emulate most, but is this not part of the process of self-identification? What happens when the assertion to commit to and complete that clothes swap is lacking, and heaven forbid, you’re stuck in the same puffy doll dress all day?
As an end to this poorly articulated rant, here’s an example of how this lack of I can effected me. In my preteen years I went through a phase of forceful grasping at ability straws. Locking myself in the bathroom, I would try for hours to figure out some way that I had somehow overlooked all this time, to get myself dressed.
“If I can’t do this, how can I ever be an adult?” I thought over and over, promising myself that I would stay in the bathroom until I worked something out. The last time I tried, I was in there for going on four hours, with no success, and a mother who insisted I come out for dinner. I felt so confused. I thought it was a race against myself and time—I had to learn how to dress before adulthood hit. I cried a lot the last time…because I just knew that that time would be no different than the last few, and I was afraid of what that meant for my future.
Needless to say, I never did learn to dress myself, and thanks to societal accommodations/taxpayers money and adjustments in who is deserving of help, I do not live my life as a nudist. On a practical level, this is positively awesome for me…I’d be dead in a ditch somewhere without living assistance. But I cannot say the same for how I see myself. When you fail at doing things that everyone else does with ease, and you never talk about it, but are just expected to chill out and let your dad help you/sleep in your clothes/ stop needing so much, it catches up with you. And it’s a sneaky bastard.
Here’s the double edge sword: We [physically disabled people….] have to be grateful for the help we have. We need to recognize that were this a different time, we would be in an institution somewhere in the belly of the Earth, treated as though we were mentally incapable. We need to be glad about where we’re at. We have to be (on differing levels) at the mercy of others, their schedules/willingness to help/ and ways of helping. We move when they move. But how then, do we create a space where assertion is still needed and valued if not obtained physically. How do we say, “It’s true that others will have to help you to achieve your basic needs, but your voice/self worth is still valued, despite being entrenched in the availability of others”? Someone should blog about disabled boundaries so I can learn a thing or 10.
Night lovely people.