Disability defensiveness

Them and Us
Other and Self
Abled and Disabled

It entered my conscience recently that I have tripped myself with an Us-Them mentality when it comes to my disability. On one extreme, I have consciously and unconsciously, felt/thought that the Abled (the Them) cannot begin to understand the cognitive, emotional, physical, and neurological fatigue I (the Us) struggle with, sometimes battle with. That can set up a resistance, an avoidance, in me (the Self) to engage the Abled (the Other). How can They possibly know where I am coming from? That mindset and behavior can set one up for isolation. That seems kind of obvious as I type it out.

I know, factually, that I am not alone in this struggle when it comes to living with an often laborious-arduous-onerous chronic illness and/or disability. I also know that others have it much worse than I. I know I endeavor to put on the abled-face and words and persona when I'm conversing with others (2D or 3D), and I endeavor to don the "healthy" appearance, regardless of my capacity that day. Sometimes I fail and fall into the explanation pit of trying to convey just how much I struggle. And the mindset unconsciously enters that Us-Them territory, where our differences become larger than our commonality. (This is mostly all in my head, I think?) Especially because I can ride a bike, and that may come across that I don't suffer with extreme fatigue and weakness.

And here I am again, as I type this, entering the territory of explanation.

I have told myself that when I find myself defensive about my limited abilities, to catch it before words come out of my mouth, and to direct my intention not as a defense, but rather to educate, if/when it feels appropriate to talk about how nerve damage works. But, too often, I've ended up going into too much detail, and still do sometimes. Then afterwards, I second and third and fourth guess myself and start thinking that maybe I came across with a victim mentality, or have actually entered into a victim mentality, or that I shared too much about myself, which I may have. At times when that has happened and John has been with me, I've asked him something like, "Did I say too much? Did I sound like a victim?" Most always, or maybe always, he tells me, "No, and no." But, John lives with me and has intimately witnessed my struggle and the self-care I go through to function. He's not an unbiased observer.

Another thing...the loss of friendships. But, they aren't really "lost." Rather they have become "absent." I could pick up the phone and call friends whom I used to keep in touch with. But, I don't have the cognitive and emotional capacity to do so. I am extremely limited when it comes to cultivating a friendship. On the other hand, the friends with whom I've not been in contact could always reach out to me. But, even if they did, I don't have the energy to cultivate more relationships; I can't give like I once did when I was more-abled. So I cut off that quasi-desire. (I have a quasi-superstitious quasi-belief about "be careful what you wish for.")

Again, from reading about others who live with visible and "invisible" disability and chronic illness, I know I am not alone in these type struggles.

One of the main points in writing out some of these feeling-thoughts (or thoughty-feelings) is the Us-Them mindset. I had never considered it in the Disabled-Abled context. It's something I'm gonna ponder a bit more, endeavor to catch when that mindset-shift is happening within me, and then endeavor to regulate it.

How do I regulate it? At the top of my list is to remember Dad.

When Dad was around 63 he was rendered a quadriplegic. I was intimately involved in his almost-daily care for nine months. Then almost-weekly (one and more times per week) for the following eleven years until he died. Even with all that, I couldn't fully understand what he went through (especially in his head) on a day-to-day basis. I got a glimpse, for a couple years, when my nerve damage was bad, bad. When I'd lay on the floor or bed and ceiling-stare because my physical body was so very heavy, when rolling over was a monumental task. (Not to mention dressing and bathing and feeding myself.) I'd think of Dad having to wait for whomever was on turning duty that night to come turn him to avoid his body developing bed sores. (Not to mention bathing and and feeding and dressing and bowel-and-pee functions, to list a few of the challenges.)

These are things the Abled (in those categories) may not be able to wrap their experiential head around; and that's okay. I've never lost a child or lived in adverse poverty or a war zone, or lots of other things. I can only grasp so much of another's suffering without having suffered it myself. This is part of being human.

Another thing I can do is, to the best of my ability on any given day, be aware when I might be entering defensive territory. And, if I'm able, reset that intention. And in all that, be easy with myself. Less critical. Surely that's possible? My defensiveness is not evil; it's understandable. That said, I can redirect it toward education (if that's appropriate) or changing the subject, if I have the energy to listen well enough. Put myself in the Other's shoes. Be more cognizant of our commonalities; we all have struggles, and those on a continuum.

There's more. But that's all I feel like writing now.