Needing Help During a Fight

When you need help in life, Life can decide who helps you, for you. This is usually alright, assuming you get along well with most other humans, especially the one who pushed you out of her vagina. But if you have a tumultuous relationship with the person helping you–or even just a one-off blow out with them, things can get more than messy. Here’s a few times when interpersonal conflicts can mess with asking for help.

Being in Conflict with a Parent

Everybody has conflict with their parents, it’s a right of passage that starts the minute you bust through the vaginal canal. In movies, teenagers with too much eye-makeup make fighting with  family seem like an art-form, with their precocious vocabulary and dramatic exits. When you’re a real-life teen with a disability however, this fighting involves a lot less grace and minimal opportunity for dramatic walk-offs.

Whatever. Ground me then. I don’t care,” Says you, with teary eyes and legs that twitch with the weight of your emotions, giving it away that you actually do care.

“Fine. This conversation is over,” says parent, who’s over dealing with your adolescent brand of Brat, and having a teenage kid.

Fine.” Remember when the last word was everything? You’d practically spit it out, and plan to leave triumphantly, only hahaha, you’re disabled–Leaving quickly just isn’t an option for you.. Don’t give yourself a heart attack trying to leave the room  quickly(while actually moving slower than a snail, because you’re mad and you forget what moving feels like). Joke’s on you.

The rough part about fighting with a parent is that your disagreements with them serve as a way to test  limits and try your hand at independence, and this is mostly true for everyone, regardless of ability. When you live with a physical disability, this assertion of limits can be elusive or non-existent, simply because you have to rely on a parent for basic things like bathing, eating and getting in/out of bed. Let’s say this quarrel happened right before bed. You may have eventually succeeded in leaving the room, but you still have to “let them” help you get undressed, or wash-up, things that many people take solace in doing independently, as part of quiet time.

This boundary-crossing is inevitable for most physically disabled people and their parents, if their parents are also their caregivers. I believe that it can make it tough to decipher how to “hold true” to your thoughts and feelings in the future. “I still need help,” starts to feel like, “I’m sorry” or “I was wrong,” even if neither of those things are what you mean to convey. It’s difficult to feel like you’ve drawn a line in the sand when that line must soon be wiped away due to physical care needs.

Interpersonal Conflicts With Significant Others

Should we discuss this? THIS ONE SUCKS. Depending on the nature of the relationship (healthy/unhealthy) the conflict varies. What remains the same is that you need help. The independent factor is the reaction of your S.O. to the fight, and their decision on how they will treat your needs afterwards. Saying, “So, I’m still mad but I need help with pants.” is like punching yourself in the stomach, and yet it has to happen, provided you’re not a nudist.

Add to that said S.O. might decide their anger is more important than your being dressed or mobile, and you have another reason to never make yourself vulnerable again.

Interpersonal Conflict With Unrelated Caregivers

Some of us people with disabilities are privileged enough to have attendants, people who come into our lives and help us with personal care stuff.Many of these people are great in a thousand and five ways, but there will always be those that rub us the wrong way. This is troublesome, as the nature of the attendant’s job is personal, and this means that any disagreements often find their way into your personal life for longer than it might otherwise. If you have a falling out with a friend, you can choose to leave their life. If you have a falling out with an attendant, they’re generally in your life until someone above them (their boss) deems your reasoning “enough” to not have to see this person again. And if that happens, bare in mind that substitute assistance might not be available when to you need it. Pick your battles. Learn to play nice.

Please note that while all of these things are factors that sometimes keep PwD from asking for help, they are not meant to assign guilt or blame. I think that everyone’s experience with disability is different, but that many of us can relate on some of these matters. As always, my intent is to discuss, not exclude. Let’s talk.

Figuring Independence When You’re Dependent

“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.