Posted in Being human, Developmental disability service system, HCBS

My offline social life in a nutshell.

Originally written last year.  Thought it was appropriate for posts on the nature of the DD system.

I kneel in my garden
You bend over in yours
I am weeding zucchini
You are watering corn

Staff talk to each other
They talk to you and to me
You and I don’t talk to each other
But sideways-glancing, we see

Mel weeding a garden.
Mel weeding a garden.

[Image description:  Large field, of plants, there’s a weeded spot that’s mostly just dirt, I’m kneeling down pulling weeds, you can’t really see my face.]

Most of my in-person social interaction works like this.  It’s as much an artifact of the developmental disability system I am forced to live in to survive, as it is an artifact of anything particular about me or the woman I wrote this about, who I have only met in this kind of context.

I owe my life to the DD system.  I have given up so much to survive the DD system even at its best.  Neither of these things can be ignored.  Everyone who uses this system to survive, gives up things you may not be able to imagine.  This should not inspire pity or a sense of sad inevitability – “things have to be like this, it’s too bad” – but outrage and love and common humanity.  This is an area where people don’t really differ from each other in anything but shape.  Don’t kid yourself that we’re some kind of second-tier human beings who innately can take this because we’re not quite as real as you and don’t feel it.  Most of us spend our whole lives shoving our humanity into boxes to survive and it’s never enough to please the forces that push us in that direction.  We feel it.  It always comes out in one way or another.  All of us.  Even those of us in hiding from ourselves.

I’m nervous about telling you the price we pay to be here.  I feel like i’m revealing a dangerous secret.  I feel like, in a system that is taking the place of something much worse, a system I need for survival, a system under threat right now, is not something I should be openly criticizing.  But if it continues without change, with everyone simply saying we’re lucky it exists – which we are, but that’s not the whole story.  And without people knowing the whole story, we try to cram our souls into boxes.  Our souls eventually object.

Meanwhile we often try to connect with each other indirectly rather, as described in the poem.

[If you want more on why and how our souls object, see this post, It’s long.  But thorough..]



Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

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