Lost Without You
One thing that hurts my heart in response to my community posts are people stating that they could never be welcomed in community because of their disability, chronic illness, or disease.
It's hitting us now, one of our own feeling unworthy (yet still showing up).
Another hiding and trying to face it alone (whom we pester with our love, subverting boundaries to offer care in the way only family gets away with).
Getting comments about how unwelcome anyone with a chronic illness would be in my community has me a little offended and a little sad, and a LOT cautious about denying someone else's lived reality.
Also,
it's a reminder to me that I haven't spoken about a large chunk of my life, something that has contributed to my world view in ways so significant as to render them invisible to me. I have not spoken to them, leaving a space blank, ready for projections.
I grew up in a big family with a big-family-culture on both sides. I only have two siblings, but my mother and aunt swapped us and our two cousins back and forth, along with friends, foster children and adults with developmental disabilities.
People with "different" needs have ALWAYS been part of my life, to the point where I do not identify them as such. To me, every person is a person who can do what they can do, and requires what they require.
I also feel weird talking about it, like I'll be seen as trying to get merit points. But I was a direct caregiver, part time and full time from about 18-23, for adults with developmental and social differences.
Here's the thing—these human lives are financially sponsored to a degree by the government, and that funding was paying me a wage to be with these people, or paying someone in my family a wage. It's not a lot, but it makes sense to do as a mother who wants to be in her own home and raise her own babies.
A disability benefit is a very small monthly allotment, distributed according to the economy of emergency, the most to the "most needy."
We call it "getting services." It's not much for someone to live on alone, but it's actually an amount that makes a meaningful contribution to an efficiently run GROUP of people.
In my experience, village/family/community life is the style of living which most directly contributes to those who are otherwise pushed to the margins of individualistic culture.
All of this weaves together with our understanding of resources, limitations, assets, and costs. If we are alert to the cost of a human on our system, someone with a disability or chronic illness might seem expensive.
The way that I welcome (or seem to "attract") those who are different or "on hard times" has been a subject of judgment and projection from others close to me, it has probably also cost me material resources, but that's not my business at all.
If we are awake to the resource that human experience represents, we understand that individuals with different and divergent specifications offer WEALTH to our community, even the ones who cannot or do not bring money into the system. Even the ones who might COST the system resources.
Of course, the system cannot accommodate too much of this.
This is why it is so important for those of us who would be called "able" to understand what it means to cooperate and collaborate with someone who would not be so called.
If the able are not in collaboration with the differently abled, that leaves the differently abled attempting to collaborate with one another, or else isolated to interact only with paid caregivers. This is unsustainable, a system oriented to perpetuate need.
When the collaboration is present, it's clear to us in individualistic, masculine-skewed values what the differently abled "get out of this." So let's shine a light on the WEALTH that is on offer to those labeled abled when they collaborate with those who are not.
Actually, let me just list what comes immediately to mind of my own lessons, and let us all know this list will be woefully incomplete. (Also incomplete is the section on "benefits," specifically as regards the costs on the individuals "receiving benefits.")
I learned that walking quickly isn't better than walking slowly.
I learned that there is joy in simplicity.
I learned to be durable, anti-fragile.
I learned that there is unintentional hurt and danger in the world, and how to cooperate with someone who hurts me when they don't mean to, how to maintain connection with not knowing how hard that is for them, while I know how hard it is for me.
I learned that I can make mistakes that will hurt someone who is innocent, through forgetting that they are different from me, and all I can do is feel the grief and show up with a better best next time.
I learned to attend to what a person CAN do. I learned to invest where the other can meet me, to enjoy what IS on offer.
I learned to see every human as whole, every experience as sacred, and I learned to see and question ANY structure (material and belief) that seemed to exclude or ignore any experiencer for the way they are different from others.
I opened my eyes to the way this culture is designed for a specific type of experiencer, and that let me question the WHOLE thing, turn the game on its head, root into the rightness of *my* knowing of the way humans can relate.
This knowing is the basis of all my work and the quiet defiance of any way anyone thinks it "should be." My work sustains my entire life.
Now our village of about 12 adults has two who are "down."
We're here to feed them.
We're walking more slowly to the river.
We're packing more snacks, cooking more food each time any one of us cooks.
We are laughing more, singing more songs, hearing songs made up on the spot.
We are hanging in the home, vision boarding--one of us clinging to possibility means all of us having it more powerfully in our awareness.
We are yelling lovingly at someone to sit their ass down and receive.
And I hear myself, as the one argues for her unworthiness, the way I respond to clarify to both of us, to all of us, that a human being is more than money, more than labor, more than an output of productivity.
Those of us who can output "productively" are utterly LOST without those who cannot.
Anyone who forgets this does so at their own peril.
