Nathasha asked me to write about the way I, as a disabled person, perceive and move through the world. Being disabled is just one aspect of myself.
Like being an intellectual, a mixed-Indian-white person, or a cranky old man. It’s difficult to unravel the different parts of myself. It’s just like I have trouble disentangling emotions-rather than things being linear, they’re more like a plate of spaghetti.
I don’t always see myself as disabled, for one thing. I do more and more, though, as I get older and less mobile.
The world isn’t a problem. It’s an amazing system that I’m part of. As a result, the world enriches my life on a daily basis. It took me half my life to realize this.
I didn’t come to this realization through
reasoning: it was an AH-HAH moment that shook me to my core. But once that happened, I was able to understand I was a full-fledged participant in the world. I
was supposed to move with the world, not through it, not apart from it.
The trick is staying in balance with the world; the Diné people of the southwest use the word “hozro,” which roughly means being in balance, in harmony with the natural world.
The competitive consumerist society we live in, and the natural way of the world, are at opposite poles. It’s hard to stay in balance and not go nuts.
Society puts much emphasis on appearance and acquisitiveness. I don’t fit when it comes to appearance: I’d never make American Idol!
And as far as possessions, I didn’t bring anything into this world and I won’t
take anything out of it, that’s obvious. But, that’s not the message that comes
off the TV. If I watch TV much I feel hammered about being not better looking and not having more money to spend.
As I said above, the world enriches me; but, confusing enrichment with riches is still a trap I occasionally wander into.
Things, possessions, stuff-they’re actually pretty easy to avoid, when I get down to it. How important are they? Just go to the Goodwill and there they all are, sooner or later. And after the Goodwill the “stuff” go to the dump.
Where I’ve had difficulties in my life is the matter of my appearance/looks. I know what happens to many “beautiful people” when they age: they turn into caricatures.
I’ve known people who seemed to have been
born with silver spoons in their mouths. I’ve seen their lives crumble,too, when they get older. That’s intellectual knowledge. The emotional knowledge is harder.
For a long time, I never wanted to see myself in a mirror. Even as an adult, seeing reflections of myself was an uncomfortable experience.
I’d heard so much about my disabilities and problems: mirrors just reminded me of all that. The messages came to me straight on, like, “with your problems you’re never going to be able to do that [this, something else, or maybe],” “Don’t do that!” “Be careful-I told you to be careful, didn’t I?” or they came, sideways, as constant reminders to walk straight, stand straight, get my “look good” looking good.
I was a kid: I didn’t see myself as handicapped or as disabled – I was simply in the moment. Kids are good at being in the moment, utterly present. That’s in a child’s job description. But the messages wore me down. I began responding, as the shrinks would say, to the negative
conditioning. I took on those attitudes about myself.
I began to believe I was careless and flawed. Whatever reinforcement I got
was fenced in by the barbed wire of my faults. There was a promise of redemption always held out to me: if I’d just listen to the grown-ups and follow their instructions, there might be hope for me.
If I “applied myself.” If I didn’t I was doomed to some sort of living hell-fire. It
was a crazy way to live. There were, also, some spirit crushing realizations:
I heard Aunt Pearl yell at somebody, “You stop picking on that poor little cripple boy!” She was the least critical person in my family. Was that really what I was?
My grandfather: “Peter is our cross to bear.”
And so on and so forth. I have warehouses of those kinds of memories. So do most of us.
I learned there was something seriously wrong with me. This all happened before anyone was mainstreamed in regular school. I didn’t go to school, so five days a week I was reminded. Whenever I was injured and laid up, my body and my family reminded me of my flaws. It wasn’t a good way to be
I didn’t know I was caught in some crazy family dynamic. I was the “identified patient.” I didn’t know it, but there was a lot going on in my family that nobody wanted to look at or deal with. Nowadays, in family therapy, that’s a predictable role in a sick family. Nobody needed to
look at anyone else’s behaviors or attitudes: I was enough. Thanks a lot,
When I was able to start pulling out of that emotional tangle and attempting to build a separate life, I responded by trying to ignore it all. I was going to be healthy and active. Yet I never forgot-no matter how hard I tried-Aunt Pearl’s words “Stop picking on that poor little
cripple boy!” I did not want to be that.
Eventually, I was overcome with the truth of my disability. But it isn’t always easy. There still are times when I want to take off across country on foot, or follow narrow trails along the Deschutes River, hunting trout.
I then experience short emotional storms starting with enthusiasm, and then rushing through realization, denial, depression, and finally to acceptance.
I don’t know if those will ever go away. At least they are short little teapot-sized tempests: a few seconds or maybe a minute long at the most. At least I know what they’re all about and can accept them as passing feelings.
The reality of my situation always comes back to me. That’s good: it would be really dumb of me to go scrambling down anglers’ trails along the river. It would abuse the privilege of being stupid.
When I identify with being disabled, I’m often confronted with people who are far more disabled than I. I get confused about my own identity as a disabled person. I don’t feel like I’m disabled enough. That’s
moderately insane, sure.
In the presence of people who appear to be more disabled I sometimes feel like a faker. Sometimes it’s similar around Indians. I’m by no means a full blood. I have it easier coping in a racist society than they do. So it’s as if I’m not Indian enough.
Occasionally I still deserve a black belt in self-denigration. Again, though, not as much as I used to. Progress, not perfection.
Once I can jettison those archaic feelings, I remember that my own experience has shown me that none of us have it all together-disabled or able-bodied, mixed-blood or full-blood. From time to time, we’re all
quivering blobs of Jell-O inside. I am, my partner is, all my friends are,
and I have yet to meet anyone who’s always on top of things. Not Donald Trump, not Doctor Phil, not Oprah, not George Bush.
The problem is remembering that. A guy in A.A. once told me, “Don’t compare the inside of you with the outside of others.”
So, sometimes I’m OK with my identity as a disabled person, sometimes I can’t find it written down that feelings have to be consistent.
Part of being human is being inconsistent, and I’m definitely that. I muddle along. And, basically, that’s all any of us can do. The hard part is just going easy on us