Friends and Family Friday is one of the (many) planned themes to organize time and blogging and whatnot. This is a placeholder until I can write a better description. As usual, if I wait for it to be exactly right for publication, I’ll never write anything. So I’m trying a bunch of new things, including posting unfinished stuff like this.
I don’t think this life is going to happen.
But here would be my dream.
It’s very simple.
I’m 80 or 90 or something.
So’s Anne. I assume so is her SO. And my other roughly same-age friends (for some reason I don’t have many) like Joelle.
We get to hang out as old people and reminisce over a lifelong friendship.
That’s what I want.
I don’t expect it.
But it’d be massively cool.
Anne is kinda my cognitive doppelgänger. She’s the other human in this picture (her SO took it, so he’s kinda in the picture if you count behind the camera as in the picture):
I want to be old and I want Anne to be old.
That’s what I want in life.
Full head of grey hair and a friend or two to use up all that time with. And as many cats as can safely work out for everyone.
As it is, I count every grey hair as an accomplishment. And right now I’m working on making it to 40, which I had a good chance of never seeing, so that’ll be an accomplishment too.
I don’t think it’s wrong to want this.
I do think it’s realistic to expect it’s unlikely. But there’s a chance. I’ve got some good longevity genes. They might make up for all the other crap. They sure have with my mom, who’s managed to survive a number of codes with some of the same conditions I have and is in her seventies. Her mom’s in her nineties.
Anne does longevity research for a living, and says I actually have longevity genes that are known about. I could’ve guessed it from the long lives of many of my relatives, but it’s reassuring. Some part of me wonders if the longevity genes are how we survive to adulthood at all with some of the medical crap running in our family.
But at any rate, that’s most of what I want out of life. No matter what my life looks like at that point — that’s part of the interest in life, is you can’t predict it. Right now my life is looking kind of sucky from the outside, but I value being alive just as much as ever, and I can’t stand the idea that being old or disabled is a ~fate worse than death~ and all that. Right now I’m living on a bed in someone’s living room and we’ve both been in the hole financially since the beginning of the month, and that’s just the start of a long description I won’t go into. Suffice to say that my sense of time makes managing finances without help about as possible as managing meds without help. We’re tightening our belts, but it’s hard.
I just want to be around for life. I don’t need to be healthy, I don’t need to avoid dementia or anything like that, I just want to be there. I’ll have plenty of time for death when my time comes.
But I already feel lucky.
Because I’m here and I have had so many times I almost wasn’t.
I’m already older than I or medical professionals predicted.
Nobody — nobody — is guaranteed any time at all. We get what we get.
So every moment we’re alive is a chance to experience that life, to live, to love.
And every piece of us is gunning for us.
And then in the end we die and get to become part of other kinds of life, that wouldn’t be here if it weren’t for us. Just like the mushrooms and asparagus in the fridge — some of our last fresh veggies my roommate made into a delicious tube-soup for me — get to be part of me in a minute. They had their time to be part of a fungus and a plant respectively, and now they get to be part of a human being and the assorted things that live in and on the human being. I love the idea of being part of that whole chain of life.
But I still want to be here as long as I can.
And I do love that this is biologically a part of what life wants, so this isn’t just a directive from my brain, it’s a directive from every living part of my body. And I do feel like I have to take into account the opinions of things most people don’t think of as having opinions. I think of humans and other animals as basically very very very weirdly complicated and specialized fungus-like or slime-mold-like creatures living together and cooperating inside portable bodies, alongside assorted hangers-on and symbiotes.
Not exactly, but that’s as close as I can get with words, so take it or leave it. I think it’s cool. And given how much I rely on my entire body, I care quite a lot about my survival as an entire organism, not as a couple of thinky bits that like staring at themselves a lot. Don’t get me wrong, I like my thinky bits as well as the next animal, but they’re not all there is to me. And I think things with thinky bits do tend to get a little bit intellectually vain about the whole matter when it’s just the way our bodies grow.
Grey hair. Friends. Cats. Longevity, or hell, even just slight old age. Want.
I keep my boughs from growing
On the side you stand
So our branches won’t clash
Or fight for the sun
Your branches batter mine
Demanding more, more, more
We live in a state of siege
We strive for a state of love
I can only love you through our roots
Which nourish and protect
Without hindrance or distraction
I turn away
So I can love you
Where your grasping limbs can’t reach
Hard and swift
Your branches grasp
And stillMel Baggs, written gradually in hir mind & on paper between roughly 2013-2018, for someone sie’s known most of hir life
Swift and sad
I turn away
And dig deep
Isolation in the DD system is the norm for many adults.
Some of us are so severely isolated that the only people who know we exist are the agencies that provide us services. And families, if we have one.
There is a long history of putting people with developmental disabilities together in institutions and other segregated situations: Large developmental centers, group homes, segregated special education schools, psychiatric institutions, ICF/DDs, sheltered workshops, and many others.
We are rightly moving away from all that. Forcing a bunch of people to live and spend time together because we all have developmental disabilities is wrong, inhumane, and dangerous.
But the current DD system has taken advantage of this trend towards isolation.
We never see each other.
My agency has 670 adult HCBS clients with developmental disabilities.
There are social events, often put on by the agency.
I am not usually able to make it to those events. But I can’t avoid noticing that when I do show up, it’s always the same 10 or 20 people at them.
So most of us have little to no contact with each other.
This makes it damn near impossible to organize to advocate about the way we are being treated. We don’t even know each other. There are, as I said, people so invisible to the rest of the world that only the agency knows they exist. This puts us in a terrifyingly vulnerable position.
But if you’re from VOR and gonna use that to defend institutions, go away. Putting people all in one place doesn’t protect us, it does the opposite.
But so does isolating us.
And we are more than just isolated from each other.
We are isolated from our communities.
This is the big lie of community-based services.
People love to talk about how we are integrated into our communities, included into our communities.
For the most part we are not.
At best, we are physically integrated. Sort of. This means that we live in places where nondisabled people live. People love to point to this. They love to say that we are living these amazingly inclusive lives in the community.
But mostly we don’t.
I live in a building where people without developmental disabilities also live. This means, to the system, that I am in a community-based program and am successfully integrated into my community.
I don’t know my neighbors.
I have no personal relationships with anyone nearby.
I don’t see the one local friend I have (who also has developmental disabilities).
Most people don’t know I exist unless they see me on the street and recognize me.
But I don’t get out much.
So pretty much the only people I see are DD agency employees and medical professionals.
I have a hard time keeping up relationships with people, because of the way my brain works, rather than a lack of interest. I have spent years completely isolated from friends I care about very much, without getting any help to do so.
Being isolated like this warps your mind.
Spending time only around agency staff warps your mind.
You forget — if you ever knew — what an acceptable life is, what acceptable treatment is.
You begin to accept whatever the agency tells you because it’s all you hear.
Your world gets smaller and smaller, weirder and weirder, and it creeps up so slowly you don’t always even notice.
I have a good relationship with all of my staff but it does not mean I am not severely isolated.
Isolation has all kinds of effects on us.
It makes us easier to control.
It makes us easier to abuse and neglect.
It makes it harder for anyone to notice if someone is doing us wrong.
It makes us lonely and desperate.
It warps our minds until we start believing the agencies even if everything in us tells us it’s not true.
And it prevents us from getting together and organizing.
All of these things lead to worse lives for us. They lead to horrific abuse and neglect being acceptable. They lead to terrible things.
We are doubly isolated.
We are isolated from everyone in our surrounding communities.
We are isolated from each other.
These things are dangerous. These things can even be deadly.
This is why I want to write about things like this somewhere someone will read it.
And the solution, by the way, is not a return to previous kinds of institutions where we are all together. Those are just as set up to allow abuse and neglect, if not more so.
There is a trend to discourage social relationships between people with developmental disabilities and each other. This is at best a misguided response to segregation, and at worst a deliberate effort to keep us powerless and disconnected so we don’t even know what is happening to each other.
The solution is for us to truly be included in our communities. Which means being able to have the social relationships and ties that everyone else is able to have. Both ties to nondisabled people and ties to other people with disabilities.
We aren’t there yet.
Not by a longshot.
The idea that we are all included in our communities because we are (more or less) physically present, is a big lie.
And it’s a lie that hurts us all.
The solution is not to keep us from having our own homes or bring us back to how things were before.
The solution is to ensure that real inclusion in our communities, with the real social ties and real choices involved, is actually happening. We need human connection, and staff aren’t a substitute for that.
To call my grandfather a rat bastard would be an understatement. He was callous, cruel, and didn’t seem to care about the suffering he caused. It’s hard to describe his cruelty without clichés: Molesting children, torturing cats to death, running over dogs on purpose for the hell of it. This was not what you’d call a nice man, or a good man. And he did cause a lot of suffering and death.
I know you’re not supposed to speak ill of the dead. But describing his character in detail is necessary to understand what I’m trying to say in this post. Because it would be hard to overstate his cruelty to animals and humans alike. The main danger in describing him is to overlook the fact that even the cruelest human beings are still human beings, not cartoon caricatures of evil.
Anyway, my grandfather repaired and built musical instruments. When I was young, I started learning the violin. I was good at it for my age. I didn’t know how good, which was probably a good thing: I was being bussed to the junior high orchestra at the age of six, when most students started at nine and didn’t join the junior high orchestra until, well, junior high. I was there in first grade.
My grandfather loved music. Lest I paint too rosy a picture of him, he performed blackface. So he could even find ways to make music a bad thing. But he acted most like a decent human being in connection to music, of any time I ever saw him.
There was a violin he’d had for years. It was older than he was, a student violin made in a German factory around 1914. These kind of violins varied a lot in quality. This one was pretty good. He kept it in good condition for decades, and when he learned I played the violin, he sent it to me. No explanation. No conditions on what I needed to do to earn it. Nothing I had to do for him in return. This in itself was unusual for him.
I have short arms. And I was young. So I couldn’t play this full-sized violin when I first got it. I got to know it, instead. I got to know it by the feel of the wood on my face, the smells, the sound of the body as I tapped it. I got to know the blue fuzz inside the case, the little documents of its first sale, the history written in my grandfather’s old-fashioned handwriting, the smell of the old cake of rosin, the glint of mother-of-pearl on the bow, the smell and feel of the horsehair. The violin became my friend.
Eventually I was able to play it. Like always, I practiced all the time. I loved playing, for its own sake. I loved interacting with this friend in every way I could. My arms and hands were small, and I had a neuromuscular condition that made it hard, painful, and tiring to hold it up at all, but I did all these things as long as I could, just to play it.
But then I had to repeat fourth grade in a new school. This school had no music program, despite having a lot more money than the public school I had attended before that. I fell out of practice.
I grew to fear this violin. It was so old, I thought I’d break it. I kept it with me into adulthood though.
And then one day in my mid-twenties I picked it up and started playing. I was astonished.
I was not, and will never again be, good for my age at this point. I’m too weak to put in the practice. My technical skills have slipped.
But something else had grown inside me, with time. Deepened. And so had the violin.
So that when I played… I was no longer playing other people’s songs. Songs were playing me. Songs came out that talked about the redwood forest, my original home. Songs came out that talked about everything that was happening around me and inside of me. There was this resonating depth that I couldn’t shake.
And I could feel my feet.
Feeling my feet is always a good sign. If I can feel my physical presence from head to toe, something is going very right. It happens every time I pick up this violin and play it.
This violin came from my grandfather. This thing that brings me in touch with the deepest parts of myself and the world around me, this lifelong friend and companion, this thing that has deepened me and deepened along with me. Came from the guy who used to imitate the sounds of the cats he tortured, just to horrify me.
If you want to know what gives me hope in the world, it is that.
It is that good things can come from the worst places. That some of the worst people we encounter can’t seem to help doing some things that are good, regardless of their intentions.
I’ve called myself the bleakest optimist you’re likely to meet. It’s because I see the good in the world, but I don’t do it by ignoring the bad or pretending the bad is something other than what it is.
I think bleak optimism is what the world needs right now.
I think we need to understand that the world has people in it who torture cats for fun. And all kinds of other horrifying people and events. But that sometimes they’ll give you a violin that does nothing but good. For no apparent reason.
We need to be able to be realistic, yet to hope and see and create good things at the same time. It’s the only way to handle what the world has in store for everyone right now on so many levels.
And my grandfather’s violin is a good example of how I find that hope.
I’m hearing it a lot lately. A sense that the future is already doomed to be terrible no matter what we do, so why should we do anything, what could we possibly do that would make any difference at all?
I have a lot of thoughts on that. They’re hard to put into words. So I’ll tell you a true story.
A few years ago, I was dying.
Obviously, I’m still here, so something changed. More on that later. But, what’s important is, I knew I was dying. Without anyone intervening, giving myself a year was a little too generous. I was pretty sure I’d never see 34.
I kept coming close enough to death to touch it, close enough that if I had simply stopped trying to be alive, my body would have shut down and nobody would have known I had any say in the matter. It was happening more and more often. I was getting weaker. I started passing out and becoming unable to breathe on my own. I’d wake up at 3 in the morning to the sound of my bipap alarm going off. This alarm was supposed to wake me up if the settings designed to jump-start my breathing again didn’t start me taking breaths on my own. My head would be flopped so heavily on my chest that I couldn’t lift it, and the tissue in my neck was so strained it was excruciatingly painful. I’d try to move my hands to press a button to call for help, but they were so weak I could barely move my fingers. I’d realize that even though I was awake, I wasn’t breathing on my own even a little. The alarm was still blaring. The bipap was shoving a whole breath of air into my lungs, they’d deflate on their own, and then the bipap would shove another breath in. I’d know I could die right then. But I felt no emotion. The alarm kept going. I’d try to stay awake, but I’d get woozy and pass out, only to have this repeat a few times, alarm still going, and then in the morning I’d be able to move again, at least as well as I could move at the time, which wasn’t very.
I knew that eventually this would happen while I was awake and not already hooked up to the bipap. And that if nobody saw me, I would die. I also knew every time I got sick, I got much sicker than I should, and often became so weak that it took willpower to keep my blood pumping and my lungs breathing. Weaker than some people I knew had been on the last days of their lives. It got worse every time, and I knew it was only a matter of time before I got too weak to power through it with effort. I could also feel, on a deep, instinctual level, the knowledge that my body was preparing to shut down for good.
I didn’t tell anyone how bad it was, not even the people closest to me. But I was not in denial. I was grappling with the emotional and moral implications of my impending death. I just didn’t want to deal with other people’s reactions. Later, when my father was dying of cancer, he didn’t tell anyone until he ended up in the hospital so sick that he’d been given a week. (He turned out to have pneumonia, which they treated, but he died a few months later.) I understood why he did that, but I began to realize that if I had died, it would’ve robbed my loved ones of a chance to say goodbye to me. At any rate, I didn’t realize it at the time, but I did think about my own death a lot, and how it affected my life.
Obviously, I’m still here. What happened was two different doctors happened to run two different tests just as time was becoming short. They showed I had a severe hormone deficiency (the amount in my body was too small to measure, and it’s necessary for physical survival), and a neuromuscular disease. Both of which were treatable. So I survived. But this isn’t one of those ~never give up hope for a cure~ stories. One, I’m not cured by a longshot — instead of facing an inevitable slow decline into death like before, I now exist in a precarious state where, if I get the right support and treatment, my health is like a house of cards: It can get very tall indeed, but one thing pulled out at the wrong moment and I could die in hours. And two, I had no reason to think anyone would figure out what was going wrong with my body, and most people in my position would have been diagnosed in autopsy. In fact, it was phenomenal luck many times over that I hadn’t died before the time they actually found what was going on. So the point is, I really had to face my death in the same way that anyone facing imminent death has to. I had no realistic expectation of an out.
So where did this leave me? Well, I lost my fear of death pretty early. In fact, I had beautiful dreams about dying sometimes. I didn’t have a death wish, mind you. If I had, I wouldn’t be here. I just had seen death closely enough to stop fearing it, and to find beauty in aspects of it.
Everyone handles their impending death differently. I had a number of occasions to put it to the test: I would wake up aspirating a large amount of stomach acid, and from then on, I would be taken to the hospital, knowing that from the moment I woke up choking on bile that this could be the aspiration pneumonia that would kill me. I was rapidly too exhausted to put my affairs in order, or to do much in the fight against that pneumonia other than let doctors treat me, so I’d resign myself to uncertainty. This happened over and over again.
I’ve heard people talk about how they’d feel bad if they were dying and had never traveled the world like they always want to. But when I was faced by “My life could be over within hours or days,” that was not the kind of thing I regretted. In fact, I could barely give a shit what I’d done in those regards. But I was very preoccupied with who I’d been. Had I been a person who acted from love to the best of my ability? Had I been a moral person? That was the kind of question that made me nervous. I wasn’t sure I measured up to who I should have been. I wasn’t sure I’d affected enough people’s lives for the better. I’d resolve to do better if I got out of this. With some success. I’m far from perfect, but I think my focus and priorities have shifted.
But the reason I’m telling this story is because I feel like how we deal with our own personal mortality mirrors how we deal with the mortality of our entire species. We are facing the very real prospect that either humans won’t survive a lot longer, or not many of us will survive much longer.
One response I hear a lot is, “We’re doomed anyway, so why does it matter what I do?”
And some people do respond to their own personal death in that way. They start caring only about their own pleasure and stop giving a shit how they affect other people.
But the thing I discovered around my own death is — my end is not the end. That’s an understandable but self-centered way of looking at life. I’m not talking about life after death. I have some guesses about that, but they can only ever be guesses until I experience it. I’m talking about the fact that even if I am no longer in the world (whether death is the end for me, personally, or not), other people still will be.
I was going to die, but the rest of the world wasn’t, at least not right then. And dying may have meant I needed to conserve my energy in ways that made it harder to do certain things, or any obvious thing, for other people. But it didn’t mean I had lost the obligation to behave like a decent human being when it was possible to do so. If anything, that obligation seemed more important than ever the closer I got to death. If my life was going to mean anything, it was going to mean that I’d tried hard to do my best by other people, whether in big ways or small.
And this has really changed things for me. I haven’t become some kind of saint. I’m still saddled with the same confusion and self-centeredness that seems to plague human beings in general, but I make my best effort with what I’ve got. Which is all any of us can do.
And I see a strong parallel here with the way people respond to the thought of human extinction. “We’re screwed anyway, so might as well enjoy ourselves before we go out and forget about what we’re doing to the environment.” It might seem like the end of our species should mean we’re let off the hook, even if our own personal death doesn’t. After all, not only is any one individual person not going to be around, no other human being will be around either. There’s a lot of problems with this, though.
I’m going to start from the idea that total human extinction is soon and inevitable. Which it isn’t. Yet. But just saying it was.
We still have a responsibility to each other in the meantime. The reality is that nobody gets out of life alive. And yet most of us care about how we live in the time we’re still here. Treating each other decently is part of that. Because until we’re not here, we are here. And while we are here, how we treat each other matters. We can’t just throw everything to the winds and do whatever we feel like. For one, that’s actually a recipe for misery and unsatisfaction, even if it doesn’t seem like one. But also, it screws over everyone else we’re sharing the planet with in the meantime. And if screwing people over is bad even though each person you screw over will one day, individually, be dead, that isn’t actually changed by the entire species being dead.
There’s also this slide of inevitability that keeps us passive. One bad thing follows from the next bad thing follows from the next bad thing. We haven’t stopped it, so we won’t likely stop it, so let the next bad thing continue and go about our lives.
But the thing is. Again, even if it’s true we’re all universally doomed as a species (which it isn’t — yet). It doesn’t mean that we have to kill as many of us off as soon as humanly possible. Let’s say we knew that no matter what we did, nobody would be alive in 150 years. Would that make it okay to make a decision to just continue escalating things until it’s 75 years, and a huge bunch of people would die younger, and harder, and another huge bunch would never be born? Killing us off as soon as humanly possible because you didn’t think it would affect you personally whether it’s 75 years or 150 years because ou won’t be here is the kind of mentality that got us into this. If you don’t like it as things are now, how do you think your grandchildren or great-grandchildren will feel when they discover you could’ve at least ensured they’d grow up? How do you think the last people to die will feel when they know they could’ve had more time, could’ve faced a less extreme end?
But also, equally important when talking about human extinction is that humans are not and never have been the only life on the planet, or the only ones that matter. Very powerful people thinking humans are the only ones that matter, and only some humans at that, is a big part of what’s killing us. If we all die off, it still matters how many species we take out with us. It matters what we leave for the species most likely to survive us. We can’t just sit here and pull down the roof over our heads. That’d be like me deciding I’m dying anyway so I might as well blow up the whole hospital or something, who cares about everyone else there and what they might want. There has been life for far longer than humans have been around, and life will doubtless outlast us. Animals, plants, fungus, microscopic life of all kinds, all of these things deserve a chance. Failing to give them the best chance possible is like nuking your entire city because you’ll be dead from cancer tomorrow anyway. It’s selfish, destructive, and irresponsible.
So no matter what’s ahead — for you or for all of us — try like hell to contribute, to make the world better for other people, to stop terrible things from becoming even more terrible. Nothing gets us out of that obligation, ever. Sometimes we can do big things, sometimes we can do small things. But always try to find what you can do to the best effect, and do something. Hope isn’t always about knowing you won’t die right then. Hope is sometimes about knowing you could die, even knowing you will die, and doing the right thing anyway, because it’s still the right thing to do.
[This post was written recently. I kept it as a draft and planned to edit it. But I’m posting as-is.]
I’ve learned to sustain myself
In tiny drops of water
From oases so small
To the naked eye
You flow over jagged rocks
Like a mountain spring
That reminds me
I’ve forgotten how
To be thirsty