
I’d like to attempt to talk about something that’s been kind of hard for me to articulate and discuss. There’s no way to go around it other than by being as honest as possible, so here goes.
In the past, I’ve admitted if there were some cosmic loophole or possibility to not have CP, even if it were just for a day, I’d take that opportunity. I won’t deny that. Is it complicated? Absolutely. Having CP has taught me lessons I’m not sure I would’ve learned otherwise. It’s introduced me to great people I never would’ve met otherwise. Thing is, my disability doesn’t make me entirely who I am. It doesn’t define me. I don’t want to give it that much power.
If I think about my daily life for a moment and remove CP from the equation, there’s no denying that it would all be so much easier. I imagine walking across a room unassisted. Carrying a plate of food or an open cup filled with water. Or even just getting from point A to point B without having to think about it, having it be as effortless as it so often looks for others from my eyes. Not to mention the aches and pains, the fatigue, the muscle tightness, the perpetual physical therapy. It’s enough to be a whole other category, for goodness sake.
Here’s a question I want to unpack. Is taking the hypothetical opportunity to remove CP from my life for a day some form of internalized ableism? Let’s think about what saying yes to this question would mean….that maybe deep down inside, I’m catering to or even proving the gross ableist mindset that being disabled is wholly undesirable, since I want it to be taken away? That I’m somehow “giving in” to these abhorrent ableist ideals? Am I dismissing the reality that CP is a part of me and always will be?
I’m not admitting that being disabled is “bad.” It can be difficult. Really difficult. I wouldn’t call it “bad.” Saying it’s “bad” is far too simplistic. For me being disabled is far more involved than just saying it sucks. Obviously it sucks sometimes. There’s more to it, though. I realize there’s probably vagueness or contradiction in this “argument.” Pretty unlike me, right? Well, to simply smooth this all over would not do justice to the complexity of the issue I’m trying to identify.
Let’s keep going. What would saying no to the question about internalized ableism mean? Like I said, living with cerebral palsy can be hard, frustrating, a lot. The desire to experience a day as someone non-disabled makes me human.
You might be wondering how can she admit to wanting to give up CP for a day while still accepting herself and her body for who she is and what it is? Can the two stances possibly coexist? I think they can. They can because I’ve got complicated thoughts and feelings that at times contradict each other. Don’t forget, all the thoughts/feelings I’ve had about my disability are totally valid. Feelings of frustration, anger, loneliness, solitude, insecurity…all of them are valid and real and true. Experiencing all this emotion is within reason and I should just be left alone about it, right? You’re damn right. Phew.
I also ask, is it even worth it to entertain a reality as someone non-disabled, since there’s realistically zero possibility that I’d wake up without CP anyway? My answer is I don’t know. I really don’t. I’m certainly not obsessed with this idea or reality but it does knock on my metaphorical door from time to time, or whatever.
To that end, I wonder if I’d truly be the same person I am now if I were non-disabled. I don’t know about that one either. It’s tough to imagine. Like, what would be different about the non-disabled version of me besides that I’d walk unassisted? Run? Go down a stairwell that didn’t have a railing? Wear heels for crying out loud?! Would my personality change? Would I have the same purpose in life? The same dreams, aspirations, goals? In all honesty, I try not to mentally venture too far down that path because then it’s like following Alice down the damn rabbit hole. A whole hot mess.
I’m not perfect, nor will I ever claim to be but I’ve realized the relationship I have with my diagnosis is fluid and ever-evolving. I don’t feel the same about being disabled now than I did when I was a kid. Through all those years I’ve learned, faltered, grew up a whole lot. Let’s face it, I’ve really changed since the third grade and my perception of myself, my body, and the world around me has shifted along with it.
The world I have to navigate is inaccessible. It’s not built for me by nature. That being said, I’m trying to focus and channel my energy more on critiquing ableism itself, as well as a society that subscribes to it. I want to experience a place that is accessible to all, not one full of obstacles. Mind you, these obstacles can easily be changed to be more inclusive and accommodating but they haven’t been and instead actively remain oppressive. I just went so far as to admit I’d choose to be non-disabled for an entire day so I in part wouldn’t have to deal with these ridiculous societal barriers placed upon disabled people. In doing so I accommodate this ableist world instead of the other way around. That is so messed up. It shouldn’t have to be that way. I shouldn’t have to go to the extreme of figuratively/mentally erasing CP from my supposed future.
The real issue is that ableism exists in the first place. Instead of let’s say, pointing fingers at me for my valid feelings, for the way I process living with a disability I’ve had my entire life, we should be criticizing the system that allows ableism and ableist ideologies to thrive in any shape or capacity. Why? Ableism is fucked up, that’s why. Oppression is fucked up. Any system that permits any of that is fucked up too. Coarse language, yes. I refuse to dance around the reality here. It needs to be said.
Fucked up. Harsh words and spoken out of my mouth too, usually in a fit of anger. When the anger is over, back to reality, not as we momentarily would like to be. I Have a very close friend, had a motorcycle accident many years ago, pain became a lurking constant visitor. Damaged (curved) his spine, and has a noticeable hump at shoulder level on the right side. I shared a reading (and taking) stem cell ‘supplements’, not the (surgical) operation option. He told me, “I woke up, sleeping on my back – that has never happened before (taking the supplement).
No doubt you take supplements (natural) or some kind and they do you some good (I’m thinking). Novice that I am in healthcare, stem cell nutritional supplements feed and repair damaged cells and other organism in our bodies. When it comes to natural care, even from medical certified holistic practitioners, there is always room for ‘Believe it- Or not’. What I’ve shared is true. His pain went away.
When I get a small stone or anything troubling thing in my sandal while walking, I stop, the pain alerted me, and I clear the object. Not that possible with CP – but just maybe, when and if we can get rid of the pain, what a step in the right direction. I’m doing the reading since reading your pages. Here is a link (Duke University Study) I just completed reading: https://stemcelltreatmentnow.com/treatments/stem-cell-treatment-cerebral-palsy/
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