There are thousands of us. Millions.
Sometimes I get over a hundred emails in one day. I usually read them all. There is a lot happening out in the world.
This month alone there are hundreds of community events. However, it doesn’t seem like too many people can attend or participate in many of them. There is just too much to fight for.
I wonder what would happen if thousands of people did the same thing? If everyone, for example, put the same sort of sign on the back of their car or wheelchair or backpack, sent some letter to representatives, walked in or out of some place, attended the same conference?
That’d be a lot of people working together. What could a collective cross-disability movement focus on?
Sovereignty? Liberation? A chance to live self-directed lives to the utmost extent possible? The logistics of the degree of collaborative organizing that such a broad movement would require are a little staggering.
I personally don’t have a disability. Except I do, on paper. I have a set of words that accompany my name and which inform people that I have a condition considered to be severe and persistent. Most people believe these words to be a disease. I don’t get paid for my disability, though.
I have never, however, been able to work 40 hours a week in the traditional sense…at least not for long.
My family “helps me” and I live on less than 1,000 dollars per month, which is actually a lot. I “work” less than 15 hours a week, but I write thousands and thousands of words and I daydream some of the biggest daydreams in the world.
If it weren’t for my family, I’d probably be homeless. Then again, if it weren’t for my family…well, let’s just say things might have turned out differently. I like how they turned out though. My life is interesting to me.
I have not had health insurance for two years and I do not receive regular medical care. Fortunately, I don’t seem to get sick often.
When I should have applied for disability, I was unable to fill out the paperwork or go through the process of ordering medical records. I was genuinely disabled. There were things I could not do. Those disabilities were related to the effects of “treatment” AND my own human
limitations of adaptive coping.
It occurred to me on the plane that towns look a little like cancer from above.
How exactly do you adapt to living in a state of coercive hell?
I am not disabled. I am disabled. Rather, I am unable? I was de-abled? No. It all has to do with this:
1. The awfulness of many modern work environments. The lighting. The air. The sounds. The smells. The sameness.
2. The effects of cognitive/emotional/spiritual orientation that makes it impossible for me to forget or deny that a whole world exists
3. My individual energy and temperament and my inability to lie and my disdain for hierarchical power structures that won’t let me nap in the afternoon and make me care about things I don’t care about.
4. Having to “go to work” when I need to be quiet can be detrimental, though not so much as it was.
I am figuring out ways to make my way.
Compared to a couple of years ago, I am holding thoughts together well. This new adventure in graduate education is going to be good exercise.
Unless you’ve read a lot of this, you probably don’t know that there was a time when I could barely hold onto a thought at all.
Since I seem to have been doing multi-posts lately (like gathered mini-chapters in a book that might not make sense unless you read the whole thing, or unless you are me) I’ll go ahead and add these notes from the airport hotel.
I just got home late last night and my roommate had left dishes in the sink. The house was cold. My room smelled weird.
It was good to leave and return, somewhat transformed.
Re-abled just a little more.
Today was the last day of the graduate school conference.
I have already written a number of words about “the intersection between constructs of psychology and mental health and our human potential, both at the individual and collective levels. I’d like to explore the role that narrative may play as a catalyst in consciousness shift and how spirituality impacts our human experience. Additionally, I’d like to survey the available literature on the ways that trauma and stress affect and are affected by cognitive and sensory processing styles.
Relatedly, I’m interested in learning more about the ways that alternative modalities of mental health care, such as peer and community support, non-medical education, and respite may be used to promote both individual and systemic recovery. Because I’d like very much to see real and measurable shift in our paradigms of culture and practice, issues around activism and effective multilateral collaboration are of interest to me, as well.”
Oh, there’s more…
Fortunately, by writing emails to myself, as I am doing now, I am able to identify how endeavors might be dovetailed, meaning that actions and interests can be structured in such a way that they are mutually reinforcing and that work done in one area may support work done in others.
When my advisor for the Social Transformation aspects of my program of study asked me how the week had been, I said, appropriately: “It’s been…transformative.”
Small mutually pleasant and polite laughter followed, and then the question: “Well, what were some of the highlights…”
I listed a few things and noted that it had been a very spiritually powerful trip, not just the part about inclusive envisioning and spirits of the drum, or the part where I told a story about my grandmother and a person I respect was moved or how much I learned when…etc. etc.
…but also that I made friends, including one who played me a song from back in the days when I relied on radio to help me to stay alive.
“I don’t know why I’m not crying.”
(I thought maybe that I had walls.)
“Why do I have these walls?”
It wasn’t until later that I realized that the reason I wasn’t crying was that I was happy.
I WRITE GOOD LETTERS.
Thank you, as well. I hope your day has been (…) (<~ interpret that however you’d like. (“Wonderful” “Beautiful” “Just What It Is” ?)
I appreciate you taking the time to put together all that ‘good stuff’ to check out. I have only glanced at it thus far, because it is hard to find space to be present on Tuesday and I’d like to hear the songs and read the words, rather than just go through the motions of doing so.
Do you remember that I mentioned (did I mention to you?) that I had been resistant to seeking deep knowledge about awakening (in the expansive sense of the word) by way of explicit human teachings? There are so many theories of consciousness and spirit and I knew I could get lost, get distracted.
(I might have also been frightened, because I knew it might (it will) change my life and make the more constraining aspects of it…oh, I just understood something with clarity. Hugely.)
I just watched the clouds and listened to the sound of my heart breaking and slow blooming like lightning.
I wrote down the words that seemed true and saw how foolish I’d been when what felt like the real truth came flying out of a small bird’s beak and I knew that I would never die.
There is a value in letting the world teach what it wants to by way of stumbling dialects, the history of daydreams and geometry, old song and glossolalia.
I don’t even know what that word means, but I think it’s beautiful. It sounds like a plant, like light reflected on the color green.
That being said, whatever that was, I held off on trying to learn the words and learn the practice, any practice.
I waited and have been waiting, crowdsourcing love and bits of information with strange and wonderful names and stories.
Did you know (I know I didn’t tell you) that I sat on my porch so many times, pleading…please, let somebody help me to understand. Let somebody give me the information I need to know, but cannot seek out because…there’s just too much meaning and too many links?
“Show me the golden thread.” It all unraveled and I picked up the end.
This is where the houseless come in…and a hundred different strangers, birds, songs on the radio and friends such as yourself.
Thank you for being in the world.
Oh, below my name is the prose-y poem I wrote about the poem that I gave you.
The Stone that Is A Poem
There could have been words
about missed cake
or a yellow balloon
under squares hung
with beaded strands
and filled with light
I saw your tears
and I love people
who have water in their eyes.
Wouldn’t that be everybody?
Yes. Yes, it would be
and yes it is
and yes we are
in that space
held between hands
like something loose and leafy
that can be pressed into a ball
to be passed back and forth
There could have been words like that.
Look, right above you,
there they are!
Everything that could be
I’m sure I said thank you, but let me thank you again.
It takes a lot of love to see a stone as a poem.
You saw my heart, in moments, and that was a gift, not from me to you, but the other way around.
I’d write a poem about that, if I hadn’t already.
I held that small world in my hands through the morning, seeing how the clouds were born within it, the brown of the earth, the white space of sky, the water from your eyes…
There is fire in there, with all those things.
I felt it.
You are my friend in the world and, for that, I thank you.