Living with A Disability

One of my posts on Facebook today read something like this:

“Sadly, one thing has become apparent to me: There is no common ground for communication between people living with a disability and those, who were lucky not to have to deal with one. The backgrounds of personal history and the derived sense of self and identity are too far removed from each other and of too different a nature. You can’t explain the damage incurred to your most authentic essence of self to someone who comes from a background of complete physical, emotional and mental intactness. Sure, setbacks, factual difficulties etc., there seems to be some common ground, of course. However, that only works, if the person with a disability manages to ignore the reality they survived and makes an effort to elevate themselves into that point of view, which seems to be the standard in the mainstream and for the majority of people. Disability separates you from the – intact, healthy – rest of people in ways that you can’t communicate to them. When you try to do, you almost regularly encounter resistance (sometimes plain offense), which I take to be a primitive way of self protection. For let’s face it: Who really wants to imagine the feelings of a person in a wheelchair to whom a flight of stairs is the perceived equivalent of climbing peak K2 in the Himalayas and that there is no way for them to get there without the help of another person? Or who really ever fathomed the depth and breadth of frustration felt by a person suffering from recurring episodes of depression? Avoiding negativity in any way, shape or form is part of the standard inventory of tools any person living a self-directed, autonomous life regularly employ.

In light of this view there can’t be such a thing as real #inclusion, maybe tolerance at best (including a constant and latent degradation of the disabled). I don’t have any intention of diminishing the very tangible, heroic and almost self-sacrificing efforts of those, who support disabled individuals in our society (I extend my heartfelt gratitude to them!). I just took the liberty of pointing out, how deep the trenches of misunderstanding can get and how easily any person can fall through the cracks of our society and out of the net of conventional relationships. I am aware that I’m heavily generalizing here. But I don’t think the very essence of this perception is all false.” #having_an_the_intouchables_moment (via (2) Wes Bound.)

I chose to share this insight after an appointment yesterday with a person working for one of the organizations over here, which I depend on following my own becoming disabled in 2008 as a result of untreated, life long complex PTSD. The appointment was about some small extra budget for special needs I have in regards to nutrition. (We’re talking about some 50$ per month here). But this episode could be a blog post of its own and I don’t mean to digress. The bottomline is that it seems to have finally sunk in with me that at this point in my life, I am no longer on eyes’ level with the bulk of the working, self supporting populace. I have almost accidentally become a member of a different club: The disabled (and along with that: The poor). Although I give it my best effort every day to restore as much dependability and productivity as I possibly can, I have to face the fact that I can’t guarantee a dependable level of productivity on any given day any more. To be more specific: The remaining symptoms of my PTSD can’t be “willed away” and they strongly interfere with my most vital needs, like e.g. good sleep (as any person living with PTSD will readily chime in on and confirm, I suppose). Only one night of poor sleep – and I feel back to square one when I embarked on this endeavour of “healing myself” from the ground up a few years back – or so I thought. However, trauma – and in my case trauma incurred at preverbal, precognitive stages of life – has firmly settled in those parts of the brain that command our most primordial reflexes: Fight, flight, freeze. It’s like trauma takes those reflexes hostage and activates them according to its own narrative and at its own “will”. From this perspective it is now clear beyond a shred of doubt to me, why and how CBT and DBT approaches must fail, as reason and the entire “higher” cognitive family of cerebral processes kick in way after the primordial reflexes had their ways with me or anyone who suffers from real trauma. (I had to stress “real” here as there apparently is a widely employed colloquial useage of the very term “trauma”, when people mean to stress the intensity of any given experience, but very often refer to something that I see as different from real trauma; yes, some things we go through may be dramatic, they may be hard. But to me real trauma by definition includes a spontaneous experience of dissociation for reasons of the traumatic event overriding any possible coping mechanism at the time of its occurence and along with that the activation of said primordial reflexes; if one of those aspects is missing, I don’t think an experience qualifies as traumatic. Hard, difficult, dramatic, yes. Trauma? No. #end of mental detour 🙂 )

And in thinking back, I realized how I have been largely doing nothing else in my life but struggle to come on par with the rest of the populace, blend in by all means, do everything I could not to stand out or worse: Find my disability, my being impaired disclosed by someone, anyone. Family, coworkers, even “intimate” partners – I did everything I could to carefully hide the impaired me, the damaged parts, the wounded child. It wasn’t until shortly after hearing my diagnosis for the first time – then still tentatively issued – that I gave myself permission to feel – and express – the immense amount of grief coming from all those  – failed! – attempts of closing up to the rest of “them”, of becoming a member of their family of people, of wanting to belong, of – finding a new home in life, a new family. All these hard battles, all those curve balls and setbacks I budged and pardoned, all those failures I thought I had shoved down somewhere into the darker recesses of my heart – I let them all come out and overwhelm me for the first time in my life. And boy, what a punch those repressed feelings served!!!

Up until here, we could understand all this as progess, as healthy steps towards recovery. However – and this is why I now choose to call PTSD a true disability – you’re quickly being treated to a reality check of major proportions as soon as you confront the world around you with some of the challenges we’re dealing with every day. Resistance, as I wrote above in my Facebook status, is one of the nicer responses. Defense, reactance up to plain hostility and institutional shunning are the other set of responses that keep adding insult to injury for anyone dealing with this debilitating monster called PTSD. It’s largely fair and fine to see those particular challenges that arise from the outcomes of trauma as opportunities for personal growth. Marvellous. But it becomes a very bitter ball game whenever you find yourself singled out, derided, even hated on for expressing yourself and your still recovering self. I almost feel compelled to say: Don’t do it! (or at least not in any conventional setting outside of a therapist’s office). Quite recently, I was treated to some of those “fine” responses of our fellow men.

No. I didn’t need to be reminded of the fact that I’m dealing with something that seems so much stronger than me. And even more importantly: I wish, the system in place encouraged and supported a person’s decision to want to come back to the working populace. But as things stand, you’re de facto getting punished for it. Makes no sense at all, not to mention this being foul game.


2 thoughts on “Living with A Disability

  1. Foucault wrote, “Visibility is a trap.” He was writing about other matters….sorta.

    But when it seems unlikely of finding humans wiling to reach toward mutual understanding…it does feel inhumane, inhuman. The ultimate loneliness. Can one fake acting like a “predator” or a thing, or a machine without risking becoming less human, without losing hope to keep one’s humanity? I honestly dunno.

    But you are not alone., even when it feels that way. You still have yourself. You are real. You feel emotions. Those are real. You have needs. Those are real. I am sending you a small message of hope. You can interpret it with aany meaning you prefer.

    We exist. We are real, worthy of more than mere survival. Try to find a speck of beauty today, within and with yourself. Try to share it with another. Just for today, remember you are real, your life matters. You matter. We all matter.

    That is my message to myself today. My little speck. That is what I choose to share with another. Your blog is a beautiful glimsp of you. Thanks.

    • Very sweet words on your part, Ruby. Thank you! And likewise! We all matter. And we become free once we manage to let go of the programmed patterns of productivity and performance. That’s my wish for you, for me, for all of us in 2015 😉

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