Too Much

There has been so much to say that I haven’t been able to say anything.

It’s one of those things that seems inevitable for me.  The more there is, the less I do.  I have heard others speak of this phenomenon.  I’m, apparently, not the only one who suffers this problem.  And I have read a bit about how decision-making gets more difficult with each decision, so having too many things to decide leads to a sort of fatigue or paralysis for your will.

I think I currently have some fatigue or paralysis of productivity, because there is just too much I feel like I must produce—or do, in other terms.

I have this long list of things that I am working on completing … so I spend no time completing tasks and all the time bingeing on The Mysteries of Laura and The Killing on Netflix.  The sheer volume of tasks makes me unable to choose a task.  I am overwhelmed before I even start.

There is this thing that they call “uniform dressing”.  It is basically taking the school uniform into adulthood, and removing wardrobe decisions from taking up your precious decision-making energy.  Steve Jobs, Barack Obama, and Vera Wang all practice(d) this way of dressing.  When you think about it, they wear the same thing all the time—not the actual same clothing, but the same basic type of outfit.  Vera Wang wears a legging for her everyday, and Steve Jobs used to be in a black turtleneck at almost all times.  Obama has a white button down and a grey pant for every occasion—dress it up or dress it down, he is always wearing the same thing.

I’ve been thinking about trying the uniform dressing out with my own closet.  I don’t know about everyone else, but I stand in front of that damned closet for way too long.  And it doesn’t matter where I am headed or what I need to do that day.  I spend twelve minutes in front of the closet even when I am choosing joggers and a tee for a reclusive day in my apartment.  And that time staring at my clothes or trying on and taking off items increases in direct relation to the amount of “fancy” associated with the event.

The concept of uniform dressing seems like a good one, in terms of reducing time spent considering clothes.  What I wish for is a similar concept for the rest of the tasks in my life.  How does one “uniform clean” or “uniform pay bills” or “uniform consider the state of the union and freak the fuck out”?  How do all those decisions and determinations and actions become rote and leave my brain less fatigued and less paralyzed?

I’m not sure there is an answer to those questions.  They are mostly rhetorical—unless someone reading this has a solution, in which case, please share your wisdom!

So, yes, there has just been so much to write and so much to think about and so much to plan for and so much to accomplish that I have been stuck not writing and not thinking and not planning and not accomplishing.  I’ve been in this sort of non-being—walking around and appearing to be handling life, but being completely stymied by all the things inside my head.

And being overwhelmed is not new to me, sadly.  But this is different, because every aspect of life seems overwhelming, not just one or two.

I have worries about all the parts of my existence, because the world has changed in significant ways over the past few months, and my view of the world has changed in significant ways over the past few months.  I’ve had all sorts of experiences where what I thought was true, turned out to be false.  I thought that people were reasonable.  I thought that Spring brought security.  I thought that my worst fears were never to be realized.  I thought that life had a certain level of sense attached to it, and that nonsense couldn’t become normative.

I was wrong.

And the world that I have been cast into, by my realizations, isn’t the whimsical Wonderland that Alice gets to explore, but the opposite.  There is no whimsy here.  There isn’t joy here.  There isn’t hope here.  The only thing that my world shares with Alice’s world is the irrationality—the senseless replacing the reasonable.

And the chaos is too much.

I have degrees in philosophy, religion, and social justice.  I understand well the ways that thought and belief and social problems shift and form and reform throughout history.  But I have never experienced a time when that shift happened with such force and velocity that I could see the change happening—feel the pendulum swing.

That force and velocity made the pendulum swing right into my gut, and throw me flailing across the room, proverbially speaking.

The worst of that flailing was in response to the emotional connection I made with the change in thought that I was experiencing.  The knowledge that people whom I have connected with, stood with, and related with believed in and supported this swing of the pendulum was painful.  It still is.  Those who would claim to love me, on one hand, promote ideals that would kill me, on the other.  And the cognitive dissonance isn’t the thing that bothers me most.  The thing that bothers me most is the knowledge that I am the Other.  When it comes down to the nitty-gritty truths of the matter, I am not the person who “deserves” care and kindness and assistance and love and life.  I am the expendable “drain” on society.  I am the margin.  I am the fringe.  I am the problem, and the solution to fixing me is denying me basic rights and basic needs—effectively exterminating me.  Let’s all hope and pray that the literal extermination of people doesn’t become normative.  But we also need to be honest about the fact that denying anyone basic rights and basic needs casts a death sentence upon them.  And I feel like many in my nation are not being honest about that.

Paint the world with your fascism, if you must.  But don’t pretend that you have painted it with hope and love.  Admit that you have painted fascism.  Admit that you are making my life a challenge.  Admit that your actions are placing so much undue stress upon my brain that it cannot function normally—being paralyzed and fatigued by the hopelessness and fear that weights the synapses, slowing them to a crawl.  Admit that you have painted a picture that doesn’t include me, or at least puts me in the dirty, decrepit corner where the others cast out the “problems” they don’t wish to acknowledge or deal with.

And now all the Trump voters are freaking the fuck out because they believe this is a political post.  It is only partly such, because making the presidency a reality show cannot be ignored as a part of the dilemma.  But, it is mostly just me looking at what is happening in the world right now, and acknowledging that I no longer have a place in it, in the view of many.  I don’t deserve a space on the board when we are playing this game.  I’m continually told to not pass go and not collect $200.  I’m stuck in a world where nonsense is sense and reason is replaced with weird tweets and executive orders that can only serve a handful of people.

(Wait.  Are we literally in a game of Monopoly right now?  That would explain so much.  I fucking hate that game.)

So, here it is:  a post with no wise expressions and no neatly packaged solutions, but just the admission that I am overwhelmed and that I don’t know how to fix that.  I don’t even know how to begin to fix that.  This post ends in the same place it begins.  It ends with me paralyzed and fatigued in ways that make me completely ineffective and incompetent.  It ends with the pain of betrayal, and the questions about how and why my experience is invalidated and ignored.  It ends with me having too much to say and too much to do and too much to fix and too much to think about.  It ends with a plea to be heard falling on deaf ears.

Because that is exactly how it started.

And it is too much.

 

Bully

When I was a girl, I suffered from a medical condition that made it impossible for me to maintain control of my bladder.  I had a major surgery just before my tenth birthday that corrected this issue, but up until then, I was tortured by classmates and neighbors.  I was less than ten years old, and I vividly remember one neighbor picking up a rusty nail from a parking area across the street from our homes and suggesting that “we shove this up there so you can stop peeing your pants”.  I remember the taunts of “Christy Pissty”.  I remember being isolated, depressed, ashamed.  This is what children did to me.  Children that were seven or eight years old did this to me.

Where did they learn that hatred and violence?

In the fifth grade, after the surgery and the pant-wetting had stopped, there was this girl, Tammy, (her name is not changed to protect her identity, because she was a fucking terrible person then and she doesn’t deserve my protection).  (Also, I may be spelling her name wrong, but I have no desire to remember the correct spelling of the names of those who tortured me.)  Tammy was friends with Shawn.  Shawn had been my friend for many years, because our parents were friends and we grew up together.  Tammy had the strange idea that three persons cannot be friends together.  I’ve never understood this whole “best friend” thing, and feel like there is more than enough love to spread around.  Lots of girls somehow get an impression that this cannot be true, and that they need to secure the best friend status of one other, and eliminate any competition.

Tammy convinced Shawn to run from me on the playground.  Tammy took the time to create hand drawn cards for both Shawn and I, and then to deliver the whole cards to Shawn through the Kindergarten “mail” that was teaching them how to address letters.  I received a very large package through the Kindergarten mail service.  Everyone crowded around to see what I had been sent.  It was the cards, identical to Shawn’s, ripped into tiny pieces—a pile of hatred on display for everyone in the room.  Everyone laughed and taunted me.

Where did she learn this hatred and violence?

In high school, I became a nomad of sorts.  I didn’t connect with a single group of peers, because I had grown to mistrust people.  (Shocking.)  But I still wanted friends, obviously.  And many people failed me in this stage as well.  I would hang out with a group of boys that were nice and fun to be around, so people called me a slut.  I still had the influence of Tammy.  One Sunday night, I waited by the cold, drafty window that faced the street for my friends to pick me up to go out.  They never arrived.  “There wasn’t enough room in the car” was the reason that Shawn gave.  But they abandoned me, without a word.  Shawn felt the guilt and told me the excuse, but the rest didn’t seem to care.  And somehow I had been singled out as the one who wouldn’t go along.  I was the one crying tears of pain and loss and confusion all night.

Where did they learn this hatred and violence?

I thought college would be my respite.  New friends.  New opportunities.  It was going to be new and different and better.  And it was for a few months, until I started to have memories of childhood sexual abuse.  I confided in a few people.  Those people told other people.  Those people asked friends of my abuser if he had abused me. They asked him.  He said no. (Shocking.)  And I was immediately called a liar and a fraud and all sorts of other things.  I was once more isolated and shamed and abandoned.  I had failed my way out of college by the 3rd semester.  Not only was I finding it very difficult to find and maintain healthy relationships, but the lack of support made the weight of dealing with the memories and nightmares heavy enough to break me.

Where did they learn this hatred and violence?

I proceeded to live out my pain.  Drinking, sex, drugs, harboring runaways, and finally marrying a man who was violently abusive.  He never hurt me while we were dating.  It wasn’t until a month after our wedding that I was first physically smacked—backhanded in the kitchen while I washed dishes.  But the ways that he harmed me weren’t just physical.  Cycles of abuse include manipulations that most cannot imagine.  It is more akin to a cult than a relationship.  Isolate, degrade, shame, and then, once control has been gained, violence against your person.  Getting pregnant gave me the reason I needed to leave.  I would have stayed until I died, I suppose, were it not for the fear that my child would learn to be like me, or like him.

After I left him, I continued on the path of addiction and struggle, even getting involved in a less violent, but just as controlling and unhealthy, relationship.  But even after I left this second relationship, and I worked to regain control of my own life, and to find some peace and some safety and some stability, people kept being bullies.  Church friends would judge me.  Family would challenge me.  Poverty became a reason to treat me poorly, and being a single parent became a reason to shame me.  There was always someone, somewhere actively working to harm and humiliate.  There was never a place where I was safe from harm.  I was always attacked, in some form.

Where did they learn this hatred and violence?

I’ve gotten to a point where I can mediate between the world and my heart in more effective ways.  I’ve been in therapy and on medication for a few years now, following my diagnosis of PTSD.  I’m learning to care less about the things others say and do.  I’m learning to find self-compassion and self-definition, instead of relying on others to tell me who I am and what I am worth.

I still have the occasional bully in my sphere.  It is difficult to get rid of them altogether.  There are so many who are pursuing their self-interest at the expense of all others.  There are so many who are looking at their decisions only from their perspective, and ignoring the impact that exists beyond their own interests.

Where did they learn this hatred and violence?

And it is hatred and violence to ignore the plight of others in order to gain more money or status or freedom or stuff for yourself.  It is hatred and violence to isolate, to shame, to deny equal rights, to deny basic human rights, and to ignore the pain of others.

I was raised in a conservative religious setting, and I obtained two seminary degrees, so I often default to the bible when I look to quote something that expresses the ways that actions are rooted in hatred and violence.  The Good Samaritan parable of the enemy of the harmed caring for him when his own religion and state and race abandoned him to death is one of those very easily quoted parables.  Your own interests are not good excuses for not caring for others is the basic lesson in that story.  But there are also many passages that talk about putting first the interests of the poor and the refugee and the sick and the imprisoned and a host of others who may be marginalized.  There are also many that speak to the judgment that will come down upon those who do not have love as the basis of their actions.

I often find it ironic and sad that the place where I grew up, and the people I know from my history, were often so filled with hatred and violence while they assumed they were in the role of the good Samaritan.  They thought they were the hero in the story.  But they were not and are not.  They are the villains.  They are the bullies.

Since the election the other day, there have been numerous reports of hatred and violence.  Swastikas and n-words and the simple moniker “Trump” have been graffitied everywhere from the sides of cars to the doors of prayer rooms.  Muslim women have stopped the religious practice of wearing burqa or hijab out of fear.  Children are taunting other children, with deportation or isolation or death being named as the fate of brown and black and Muslim students.

Where did they learn this hatred and violence?

They learned it by watching a bully become the president-elect of their country.  They learned it from the rhetoric they hear in the news and around the dinner table.  They learned it by watching the adults in this country make the grave error of choosing a man who spouts hatred and incites violence at every turn as their leader.  They learned it by living in a society that places self-interest above the health and vitality of the society.  We would rather burn with big screens than live peacefully with one another and share resources.

Donald Trump is the Tammy of my current situation.

The threat to end healthcare for millions is a real threat for me. I am chronically ill.  I qualify for Medicaid under the expansion required by the ACA.  I will not have healthcare if that is repealed.  And, without the other ACA requirement of insuring people regardless of pre-existing condition, I will likely be uninsurable.  I’ve had about 200 appointments and four surgeries this year.  I take 18 medications right now.  I see between two and seven doctors per week.  All of this care keeps me in a state of disability, but a rung or two up the ladder from death.  Without this care, I will drop down to the death rung.  I die.

Without food stamps, without insurance, without housing assistance, and without disability, I die.  Losing any one of them will potentially cause the loss of all others.  My life is in danger, because we (and by “we” I mean the electoral college and don’t include myself at all) elected the bully.

When I was left crying that night by the window, left behind by my “friends”, I am relatively certain that all the people present didn’t want me to be abandoned and harmed, but at least one of them did. And by following the lead of that person or persons, friends that had been such for a lifetime were lost.  The effects were devastating, and each person who went silently along in that car was responsible for my pain, because they didn’t put an end to that pain.

Taking stock of my life, and seeing the ways that bullies operate, and the ways that their actions affect others, I am trapped in a serious situation once more.  After living through all the things that I have lived through, and enduring all the struggle while another profited from my demise, I see clearly the ways that electing a bully will impact the nation.  The people who have let this go on, and who have elected a bully, are committing themselves to the ideals of bullying.  They are allowing hatred and violence to win the day, and to rule the country.

I need to ask you, are you going to be the boy with a rusty nail, or the Tammy, or the abusive husband, or the manipulator/cult leader/champion for hatred and violence?

My childhood, my teens, my adult life—every moment and every experience—could have been radically different if the people around me had not been conditioned to consider themselves before others, above others, and in control of others.  The people around me learned it by watching other people (probably their parents) adopt and embrace individualism and reject care and compassion and empathy for others.  Whether you are using the choices one makes or the color of one’s skin as the litmus test for whether you shame and isolate and judge and harm, you are doing harm.  By considering only your own interests, you are doing harm.  By leading with your fear and reactionary instincts, instead of using facts and thoughtful consideration, you are doing harm.  By voting for a bully, you are doing harm.

Where did you learn such hatred and violence?

And why don’t you seek to unlearn hatred and violence and, instead, live in love and peace?

Why do you choose to remain the bully?

 

On Being

I made a plea for funds on my fundraising page recently.  This happens a lot, because I have a lot of financial need at present.

I wrote something within that plea about being a human being, and therefore deserving basic human rights.  And not long after, I felt this unsettling feeling in my gut.  I felt that feeling because I realized that making this statement means that I believe that some of the people who know me do not understand basic human rights.  I realized that some of the people I know do not think all people deserve life and health and safety.

That is the worst feeling!

I am making an argument for my dessert of life to people who know me.

Seriously, let that sink in for a moment.  People I know need to be told that I deserve life.

It is hard for me to imagine that others think existing on the most basic level is not a right.  It is even more difficult for me to conceive of, because many of those same people are insistent on the rights of a fetus.  Before your life is viable, you have rights.  After being born, you cease to have those same rights?  I find that concept difficult, if not impossible to argue.

The United Nations Universal Declaration of Human Rights lays out a number of rights that all human beings deserve, simply because they are human beings.  One of those is the right to a standard of living adequate for the health and wellbeing of a person and his or her family, including food, clothing, housing, medical care, and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age, or other lack of livelihood in circumstances beyond his or her control.

This right, that is offered for all who are human, is denied me on an ongoing and regular basis.  I’ve been living without that standard of living, and without that security for the last two years while I wait for my disability hearing to occur.  And I have been living without that standard and that security for pretty much my whole life.

Obviously, I don’t count childhood in the financial failings of the system of social services, so my adult life has been plagued with poverty and lack of security.  But I have been without life, liberty, and security of person since childhood, since I was not free and not safe during that time.  Life, liberty, and security of person is one of the rights expressed by the declaration as well.  And I didn’t have that.  I still don’t.

And I am not alone in my lack of life, liberty, and security of person.  Millions of people share this state alongside me.

We make all manner of excuse for why this life and liberty and security and standard of living and equal pay and recognition and participation in government and freedom of thought, expression, religion, and peaceful assembly are not offered to all humans.  And all of them are inexcusable responses to the failures of our society to meet these standards.

At this moment, in the United States of America, there are children being gunned down in the streets, and unarmed people of color being murdered in the name of “feeling threatened” by the police.  There is a violent response from law enforcement to the peaceful protest of indigenous peoples on their own land.  There is humiliating punishment, torture, cruel punishment, and slavery within our prison systems (that are privately owned and income generating).  People are not protected from arbitrary arrest, detention, or exile.  Political refugees are being refused access and protection.  There are millions assumed guilty until proved innocent, instead of the other way around.  There is arbitrary interference with privacy, family, and home with the NSA listening in on the American people.

All of the above are in direct conflict with the declaration of human rights that the UN puts forth.  All of the above are not acceptable.  And all of the above are excused by claiming moral failure or some form of action that pretends to nullify the humanity of those without adequate human rights.

So, at this point, I am offering the whole of society a command:  STOP.

Stop treating me and others as though we are not human.  We are human.

Dehumanizing happens in many ways, but at its core is the idea that we make someone seem like less of a person in order to ignore the responsibility we have toward other humans.  We take an individualist stance, and we find reasons to say that people deserve what they have received on an individual level, so that we can ignore systems of injustice and refuse to change, share, care, or relate to others.

I sometimes feel like I live in a society of toddlers.  When you are a toddler, you don’t yet understand that the world is not revolving around you.  As an infant, you cried and someone responded.  All the things were about you.  And then, suddenly, you are thrust into social interaction, and all the things are not about you.  “Mine!”, becomes your war cry.  And all the adults are telling you to share, to respect boundaries, to not harm others, and to see your life in community instead of seeing it as a place where your voice is met with immediate action and all the things are meant for you.

The society I live in is struggling with the concept of sharing.  Adults are still using “Mine!” as the war cry.  My woman.  My home.  My paycheck.  My desserts.  My right to take and never give. My parenting style.  My business.  My tax breaks.  My neighborhood.  My border.  My ego.  My viewpoint.  My voice.

But that isn’t how a society works.

We cannot be a group of individuals all working toward our own interest and ignoring the interests of others and believe that this manner of being will lead to justice and equity.  It won’t.

It cannot. Because society is not just a bunch of people doing their own thing.

The word society originates from the Latin word “socius”, which translates into the concept of “companion”.  A companion is one with whom you are a friend, a partner, a complement.  Companionship requires the consideration of others, and the partnership between parties.  Somehow, we have forgotten that those within our communities are companions, partners, and friends.  Somehow, we have supplanted the idea of “individuals in a space” with the original meaning of “society” that includes companionship.

Our concern ends at those we consider “close”, both in relationship and in common interest, and we no longer extend our concern to those we see as outliers or strangers or “threats”.  The comaraderie of society ended as the shift from the 16th century meaning was made and we began to look at life in the way of the toddler, by fighting to keep our individual self at the center of the universe.  Society became a group of individuals sharing the same space, and lost sight of our responsibility to one another.

I’ve studied social justice for some time now.  I’ve lived a life that denied me basic human rights for even longer than I studied.  And I can tell you, both from an academic research standpoint and as a person affected by the way we view rights, that being a bunch of self-interested individuals who pursue our own agendas in the same space is not working.  The increases in crime, in protest, in outrage, in violence, in refusal to help and share and identify with others, are all symptoms of the problem of that individualist thinking.

We need to find that understanding of society and companionship once more.  We need to see all human beings as deserving of the basic rights that the United Nations has put forth.  We need to look at all other humans as equal to us in their humanity, regardless of race or religion or poverty or moral failures or any other standard we might assign to others in order to dehumanize them, and to justify our lack of companionship with other human beings.

We need to treat humans as human.  We need to care for each as we might care for the one we consider our closest companion.  If you wouldn’t treat your friend or partner in a particular manner, then you ought not treat any human being in that same manner.  Would you leave your partner homeless?  Would you submit your partner to torture?  Would you deny help to your best friend when they lost their job suddenly, or became ill?  Would you tell your child to “deal with it” when they are profiled, policed under different standards, and denied education?  Would you find excuses to allow the harm of those closest to you?

If the answer to those questions is “no”, and I hope the answer is no, then the answer should remain “no” when that person in the scenario or circumstance is not your partner or best friend.  We should refuse to allow that treatment to any one of our companions—any person in our society.  We need to begin thinking of our society as our companions, our partners, and our complements.  When we work together, we create good things for all.  Symbiotic relationship doesn’t apply only to the nature channel’s programming.  Society is a symbiotic relationship, and each individual within it should benefit from the others.

I once had a conversation with a man on the bus who was in tattered clothing and appeared to be transient.  We talked about his kids, and about his previous experiences, and about his life now.  He lives in a tiny room above a bar, and he has a sign in his window that says, “Piano lessons, classical” and has his phone number below.  He has that sign because he was a concert pianist.  A talented and well-traveled, educated man was sharing this conversation with me.  He told me of the places he had been, and the people for which he performed.  He was famous in cultural, musical circles.  And now he was without resources, because playing the piano doesn’t necessarily pay well anymore.  When people pass him on the street, they think of him as a bum, a drain on society, a dirty or bad or frightening threat to the wellbeing of “good, clean, responsible” citizens.  But he isn’t what they imagine.  And if they could see him as a comrade, as a companion, or as a friend, as I saw him, they would enjoy beautiful tales of extraordinary fame and fortune.  They would know, if they could see him as their equal, that he was more accomplished than anyone else on that bus.

But they don’t see him as an equal.  They don’t offer him the human rights to housing, clothing, food, medical care, and social services.  They don’t offer him more than a look of disgust, or the ever-present tactic of pretending that he doesn’t exist.

I’m not offered the human rights to housing, clothing, food, medical care, and social services either.  I’ve been disabled for a few years, and I still haven’t been given resources to survive and remain safe.  I don’t have what I need to live—to stay a human being and not become a pile of ash—unless I plead with people to meet my needs on an almost daily basis.  The pleas are met with resources, thank the Divine.  But those resources often come from the same six or seven individuals.  The rest of my acquaintances ignore the pleas, or offer reasons that I do not deserve resources or should “get a job” to gain resources.  They don’t seem to care about my rights as a human being.  They don’t seem to believe that I deserve the right to security in the event of unemployment, sickness, disability, widowhood, old age, or other lack of livelihood in circumstances beyond his or her control.  They don’t seem to believe that I have the right to live.

I do have that right.  And if you would treat me as your companion, your comrade, your complement, you would see how much I, as a human being, have to offer, and the importance of offering me life.

You hear much about “the system” or “systems” of late.  People whom I stand in solidarity with are being oppressed and denied their basic human rights.  We have created ways of acting within society that cause systemic damage, meaning that the whole of the society is affected.  We have created a society where individualism, racism, sexism, ableism, classism, and all sorts of other “isms” are infecting every part of the whole.  And many think that the answer to this problem of an unjust system is to spew forth more hatred and division and insistence upon individualist approaches to finding solutions.

But when the whole is affected, you cannot simply treat one part of the disease, leaving the sickness to spread in other areas.  The whole is affected.  And the treatment plan needs to begin with addressing the whole, not a part.  The cure for our society’s ailments begins with adherence to the declaration of human rights.   We need to stop being toddlers and grow into compassionate adults, who share and work together and have concern for others.  The way to justice and equity is clearly spelled out for us—life, liberty, and security of person.  The way to justice and equity is seeing people as human beings, and treating them as such.

I am.

Descartes stated that thinking was the basis for being—I think, therefore I am.  But I believe that he was off by just a bit.  I am, therefore I am.

Being is what makes us worthy of being.  Living is what makes us deserving of life.  Existence is what demands I receive resources to maintain my existence.

I am.

That is the whole argument.

And none of us should need to plead for our lives, no matter who we are, what we look like, where we come from, or what we do or do not accomplish.  We should be offered a basic standard of living because we exist.

We are human beings.

We are.

 

But Some Lives Don’t

I removed a comment from my Facebook post this morning.  Its basic message was “ALL LIVES MATTER”.  I was as kind and respectful with the one who commented as I was able, but I could not leave that comment on my page.

It isn’t that I think all lives mattering is a bad thing.  I’m all for that.  I would love to see that.

The problem is I see very clearly and close-up that some lives don’t matter.  And that isn’t right, and it isn’t good, and it needs to be rectified.

I think that a lot of people miss the point of the Black Lives Matter movement, and other similar movements that are pressing for equity and safety and opportunity for those who are marginalized in our society.  The point is not that these lives matter more than the “all lives” that some use to counter these movements.  The point is that these lives already live under the oppressive and marginalizing weight of being treated like they don’t matter.

Last night I posted because I watched a young man be shot across the street.  He was a black man, living in an underserved neighborhood—my neighborhood—and he was just walking down the sidewalk when he was struck with bullets and fell to the ground.  There were lots of people out last night, on that same sidewalk on this block.  Women, children, elderly people, and young men all shared the moment.  We sprang into action.  I called for the police and an ambulance.  Several others ran to where the victim had dropped, peeling off their shirts and pressing against wounds, administering what first aid they could and keeping him conscious until help arrived.  And after the event, I posted a plea for an end to this injustice, racism, classism, and access to firearms that transforms quiet blocks on the Westside into blue-lit, yellow-tape-covered, crime scenes.

Many responded with sadness, some with shock.  One left the “ALL LIVES MATTER”.

They don’t.  They matter in the sense that I believe in equity and that humans deserve love and respect and opportunity and safety and security as humans.  They don’t in the way our society currently treats the brown and the black and the poor and the sick and the suffering.  We are treated like shit.  We are treated like our lives are not worth the air we breathe.  We are treated as though our lives mean less to others than “rights” to have entitled and privileged and unfettered space for the most white and most rich and most cis and most male and most heterosexual.  We are treated as though our lives don’t matter.

Here I will interrupt myself for a moment and clarify something.  I’m not black or brown.  I am poor and sick and queer, so I understand much of the marginalization that my neighbors experience, because I experience that too.  But my plight is not their plight, exactly.  I can pass for a normative, respected, acceptable person when I am not asking for money or ranting about the problems that disability creates.  I can simply not share with others that I am unable to work and struggling to survive.  But my neighbors can’t pass as white-bodied individuals.  And no matter what other status or wealth or purpose or good works they may have associated with them on an individual level, they are judged first and foremost by the color of their bodies.  And that judgement leaves them unsafe, disrespected, gunned down, impoverished, and more.

I live in an area where I am one of very few white people.  It took me living here for over a year to even meet some of my neighbors.  There was a suspicion that floated about me.  Why was I here?  What did I want?  Why would I not live in a “better” or “safer” area?  After all, I am white, so I should be able to easily find a place to be among the other white people.   But I am poor and disabled, so I cannot afford to live among the other white people.  And, as my neighbor so poignantly expressed last night, “None of them are buying you a house in the suburbs, are they?”

Nope.

Nobody has offered me a place to live in the relative safety that they live in.  Some will help with finances so that I can continue to eat and heat or cool my home and stay alive in my marginalized state.  Many will judge me and treat me poorly and say bad things about me to others in order to discredit my claims that the system is rigged against people like me and my black and brown neighbors.  “Lazy, free-loading, welfare queens” is how they see us—not as hard-working people of integrity who just happen to have arbitrary traits that prevent us from being valued in our society.

I stood outside and talked with my neighbors for some time last night after the shooting had happened.  We talked about how nobody wants this for themselves or the ones they love.  We talked about how a teaching career and a host of graduate degrees and the love of god and fellow humans means nothing, because we have that arbitrary trait of ours that negates all of the good, purposeful traits.

We are good people, by and large.  We are families.  We hold down two or three jobs.  We learn from a young age to appease the system at all costs, to prevent increased suffering.  We learn that even appeasing that system all the time will not necessarily prevent suffering—it might still end in us shot on the sidewalk.  It may even cause us to be shot by the people who are sworn to protect and serve us.

I’m not black or brown-skinned.  But I count myself as “we”.  I count myself that way because I have been immersed in this culture, in this neighborhood, and in this experience for over five years.  That is but a fraction of the years that these others have and will be marginalized due to arbitrary standards, but it is enough time for me to know and to feel the pain that is endured here.  Not fully, of course, but in part, I feel what those around me feel.  I hear their cries.  I listen to their stories.  I relate to their pain and fear and frustration.

I had PTSD long before I began living in a ghetto-like environment where people of color are trapped for lifetimes, and living to age 50 is a landmark worthy of parties bigger than the reception after most weddings.  But being here triggers much, because the traumas of being black surround me, even though I am white.  I’m not afraid of or in my neighborhood.  I am afraid for my neighborhood, and the people within.

Our lives do not matter to politicians or manufacturing companies or many of the police or “decent” white people living in large houses in nice areas where you don’t even lock your doors at night.  Our lives don’t come with the assurances offered to others.  Our lives are lived moment by moment, challenge by challenge, and triumph by triumph.  And we value life more than most, because we see the fragility, and we understand how quickly and without comment we can be removed from this world.

There were no news vans or helicopters last night on my block.  There were only those who live here and those paid to come here and help.  This young man was gunned down in the street, and only those who live and work here even know about it.

Sure, there might be an article on Monday about how many shootings and homicides happened in Chicago over the weekend.  But this young man may not even be mentioned specifically, and all the people with power to change the situation will pass over that article and give it over to statements including drugs, gangs, “black on black” crime, or “ALL LIVES MATTER”.  They will give it over to excuses, and not to the truth of the matter.

The truth of the matter is that we do not matter.  The sick, the aging, the black or brown, the woman in hijab, the man with prison tattoos, the person with the name you don’t know how to pronounce, the mother who has three jobs to provide for her children, the veteran on the corner with a sign and a paper cup asking for care and respect and the ability to live—we don’t matter.  And we feel the weight of that every day.  We know you don’t believe we matter.  If you did, you would change your actions and fight for our rights and stop saying that “ALL LIVES MATTER” to justify your ignorance and lack of care for the most vulnerable in our society.

If all lives really mattered to you, you would stop purchasing fast fashion to save the lives of Bangladeshi men and women.  If all lives really mattered to you, you would demand that social security support those who are disabled without years of suffering and waiting to be heard and offered care.  If all lives really mattered to you, you would be screaming at your representatives to put an end to the sale of handguns and assault weapons in our country.  If all lives really mattered to you, I wouldn’t be trying to crowdfund my existence because you would be generously donating funds or making certain that there were safety nets for those who need them in this country.  If all lives really mattered to you, you would reassess your views regarding women and birth control and safe access to abortion to make certain that you were not looking at the issue from a privileged viewpoint.  If all lives really mattered to you, you would fight for the rights of the formerly incarcerated, sex workers, and juvenile offenders.  If all lives really mattered to you, you would call for an end to the “war on drugs” and private prisons and mass incarceration.  If all lives really mattered to you, you would celebrate love between people, regardless of their gender, and use the pronouns and names that transgender or queer individuals have chosen for themselves, and stop looking sideways at men in dresses, or women with shaved heads, assuming that they are “wrong” somehow, for being who they are.  If all lives really mattered to you, you would be outraged by the oppression of, marginalization of, or limited rights of any and all people or groups.  If all lives really mattered to you, they would matter equally.

I can hug a homeless, mentally ill, prostitute on the corner and wish him a good day and ask how he is doing.  His life matters to me, regardless of anything he does or does not do.  And if all lives matter, then he should have healthcare and medication and safe housing and opportunities to make money in other ways than selling the only “capital” he has—his body.  If you wouldn’t go near such a man, then all lives do not matter to you.

If you would not sacrifice a portion of your own comforts and securities to make certain that all others had equal, or at least basic, comforts and securities, then all lives do not matter to you.

And if you cannot admit that you treat lives in a hierarchical manner, placing some lives higher than others, then you are in no position to say “ALL LIVES MATTER”.

This post is harsh.  But I won’t apologize for that, because it is necessary.

People with extreme privilege need to stop pretending at care for all lives.  Instead, all people need to care for one another in a manner that demonstrates we want a world without privileged status—we want a world where each life matters as much as our own.

I don’t see that from most of the people who say things like “ALL LIVES MATTER”.  I don’t see that from many of my acquaintances or my Facebook “friends”.  I don’t see that from most of my family members.  I don’t see that in my neighborhood or in my city or in the way that the problems we are facing are addressed.  I don’t see equity.  I don’t see lives that matter.  I look out my window and I see a sweet young man, who passes my home almost every day, bleeding on the sidewalk—shot, wounded, and not mattering much at all.

So, please, for the love of all that is good, stop pretending and making excuses and going forward without challenging the systems that are oppressing others.  Grow.  Think.  Listen.  Consider.  And then change, so that you are participating in a society that offers equal rights and equal benefit and equal status to all.

Don’t say all lives matter until you are doing everything you can to honor every single person living on this planet, and have your actions be intimately tied to the care and concern for every single one of those lives.  My guess is that following this suggestion will create a situation where only a handful of people I know—maybe less—will be able to say that all lives matter.  The rest need to sit and study and wrestle with the concepts of privilege and oppression and injustice and equity for a longer time and with more intent.

Yes, all lives matter.  But no, we aren’t treating people in that manner.  So start treating people as though they matter, or stop fucking saying that they do.

This morning the blood is washed away and people are out doing work.  The men across the street are working on fixing a car.  Next door to them is a man working diligently to rehab a house that has been boarded up for about four years.  I’m sitting in my office, overlooking the children and the young people and the men and women moving about.  We just go on.  We just keep on doing life in the best way we know how, in the midst of trauma and terror and task forces and terrible social support systems.  We are resilient and we are strong and we are good.  We keep fighting for change and working toward peace and summoning hope and praying for better situations.

Even if you don’t show us our lives matter, we know that they do.  So we live our lives, in the best possible ways we can.  Our lives matter to us.  We hang on to one another, and we work together, and we keep telling our stories, hoping the world will one day hear and respond.  Hoping one day we will see that our lives matter, that all lives matter equally, on a global scale.

May that day come soon.

 

Documented

Documents and documenting are serious themes in the past few weeks to months.  It is interesting to me the ways that we are forced or encouraged or inspired to document, and all the different reasons that are used to justify or explain that documentation.

I recently had to make a trip to my local office of the Chicago Housing Authority.  I had used their new online participant portal to upload requests for a rent renegotiation due to household income changes in both August and February.  In August, they denied my claim, saying I had not attached documents proving my claim—but I literally uploaded them per the instruction of the site, and had copies and receipts of all the attached information.  Last week, they claimed that I had never made a request in February, and that my mailed documents of proof (which I had mailed to avoid the same result I was met with in August) went to the wrong address (the address listed on their form and web page, by the way).  So, they claimed there was no proof that I ever applied for a renegotiation.

Not true.  I had documents and receipts a plenty this time.  There was no way I was letting the lack of documents be my downfall this time around.

So, I went into that office with an entire folder full of documents.  I brought documents proving I applied with proper documentation in August and was denied.  I brought documents proving I applied again in February, and supporting documentation that I deserved the rent adjustment at that time as well.  And, for good measure, I brought in documents removing my daughter from my household over a week before she moves into her own apartment.  All of those documents were copied and admitted and dealt with by the office manager at the office, and then she said, “Now, the only thing we are missing is two documents signed by your daughter and we can get all of this processed.”

Gaaaahhhhh!!!!

I called my daughter and asked if she would head down to the office after work to sign these added documents.  They closed at 5, and she made it there at 4:45, signed the documents, and in the next 30 days, my mailbox will receive documents that tell me whether or not I am allowed the revision in rent, whether or not they will back-date to the dates of application, whether or not I will receive a refund of the monies I overpaid due to these errors on the part of the housing authority, and a document that tells me to come into the office again and sign about 45 other documents so that they can give me documents to take to my landlord, so that he can accept my voucher sans dependent child document and let me keep living in the same home I am currently living in.

If you thought being poor was tied to laziness, you are an idiot.  I fill out as much paperwork as any doctor or lawyer I know.  I just don’t get paid for filling it out—unless you count rental assistance and food stamps as getting paid, which I don’t, because safe housing and food security are basic human rights. (A fact that most developed countries have embraced and created systems of care to ensure. But not the United States, because we are selfish, entitled brats who believe we somehow earned our privileges—in other words, ignorant assholes.)

And if you thought you heard the word “documentation” enough for a lifetime in my earlier paragraphs, then prepare to be disappointed!

There are all sorts of other forms of documentation that are tied to my disability case.  The disability system is such that you are denied the first time.  Almost everyone not in a wheelchair, nursing facility, or mental ward is denied.  That is just the way it works (inefficiently and expensively).  You acquire documents from all of your doctors, you fill out numerous assessments, you add in assessments filled out by those who know you or live with you, and then you wait for documents that say you are denied.  After the denial documents, you go find a lawyer, and they make you sign about 87 documents because you must sign disclosure statements for every lawyer who might work on your case, not just the law firm, according to the state, effectively requiring the disabled person to sign the same document 4, 5, or 6 times, depending on the number of lawyers in their particular firm.  Then you wait for the exact same assessments to arrive and be filled out another time, and collect the same medical records, but your lawyer asks you to keep them informed of any changes in treatment or diagnosis and to document your wellness or lack thereof, so you give all the paperwork you did last time, plus you begin logging your daily mood, daily function, daily tasks, and any and all changes that happen, to support your case when your redetermination is denied, and then you have to file paperwork requesting a hearing, and get back a document that says you will be given a court date in about 10 to 12 months.  Then you document changes and function and symptoms and such for a year, while you wait to bring all the information amassed in the past three years before a judge.  Who, if we have done all the things correctly, will create a legal document stating that I am, in fact, disabled.

It isn’t difficult to understand, at this point in the post, why I hate documents.  I am so overwhelmed with paper that I sometimes feel it is drowning me, and paper cuts are just par for the course in my situation.  If I don’t have any, I worry that I must have missed some paperwork that needs filling out or filing.

But yesterday I was introduced to a new form of documentation.

Yesterday, two friends came over to help me create a video for my fundraising page.  And we started by documenting things.  One suggested things that we could document, and the other started slowly, but surely, taking video and still footage of all the things.  We started with adaptive tools—the things I need on the daily to live life: special knives and peelers and openers for the kitchen, a tool to tie buttons and pull zippers, various adaptive pens and pencils and cutters (because I can’t use scissors without severe pain and injury), and more.  Then we moved on to the overflowing basket of medications and the daily pill organizers that are filled with multiple doses of many of those medications.  We also printed a copy of my next two weeks of appointments, which required three pages of paper.  And we looked up the list of current illnesses, which wasn’t complete since not all of the things are recorded in the same place, but still took almost an entire page.  Next was physical therapy and occupational therapy papers that show what exercises I am to be doing daily.  We spread them out over the floor, and as I was preparing them I dropped papers that scattered all across the living room.  My friends filmed as I sat and worked to collect and organize this pile of documents once more, and caught on camera the fact that I cannot see some of my therapists due to insurance refusals, documenting that my medical needs are sometimes not met because of money.  And by that time we were all exhausted and decided that we would need another meeting to document all of the ways that my illnesses affect my life—maybe two.

But this documentation, this mini-documentary of my daily life, being made by the son of two documentarians and his fiancé, was eye-opening and expressive of things that I hadn’t imagined.  My life is really difficult.  And there are all sorts of proofs of it.

However, the thing that was most shocking to me was that I am doing all these things.  I am doing my exercises and using my splints and walking in water to get some cardio and eating 1100 calories and none of them sugar and filing all the papers and bringing in all the documents and taking all the medicines and attending four and five medical appointments each week and stretching and meditating and coloring mandalas and doing art therapy and studying nutrition and gardening and using my paraffin bath and doing yoga and writing and more. I am doing far more than anyone might imagine, because I am doing far more than I could have imagined.

When I look at all the things that make up my life, and I am drowning in the sea of papers, and exhausted or craving chocolate or in pain, and feel insignificant and incapable, I rarely look at the proofs of all that I am doing.  I look at all the documents that show I am not “good enough”–poor and sick and lacking.  I don’t look at the documentation that shows me doing every possible thing I can do to be the most well I can be.  I get dragged down by the negative proofs and don’t even consider that there are positive proofs.

While some might not understand the life of the chronically ill person, and will refuse to believe the proofs laid out in my mini-documentary, I know that I am doing so much hard work to live my best possible life.  Whether that means I walked the dog, or I ate vegetables, or I colored for a bit, or I remembered to connect with my breath, relax my face and neck, and engage my core when feeling fearful or overwhelmed on a stressful transit ride, or I washed the dishes, or I asked for help, or I practiced new body mechanics, or I managed to finish an article or blog post, I am doing everything that I can do to live well.

My previous ideas of living well were not good ideas of living well, in many ways.  And when my focus shifted from living out my pain in ways that brought more pain to creating a life that included education and progress and sufficiency and stability, I thought that meant I was on the path to living well.  And I believed that documents like my resume and my degrees and my personal and professional references were the ones that would bring me other good documents, like the deed to a house and paystubs that showed more than three digits before that decimal point and an insurance card that I could bring to the orthodontist to receive services.

But I had it wrong.  None of those documents are proof of living well.  I know plenty of people with bigger incomes and better insurance coverage who are not living well, but are full of contempt and hatred and negativity.  I know plenty of people with lots of letters behind their name from years of education who are completely ignorant on important points.  I know plenty of people who are physically and financially well, but complain every time I see them about one thing or another in their life, refusing to see anything that has good or peace or acceptance or joy at its core and only seeing the negative.  None of those people are living well.

Documenting my life started as a project to garner support from others, by offering proofs of my need.  And, I suppose, that is still one of the goals of the project.  But, it has become much more than that for me.  It has become a proof of the fullness of my life, and the extent of my dedication and strength, as I work day after day after day to live a life of wellness—improving my body and healing my mind in any way possible.  This video will be something that shows others what dealing with constant physical and mental suffering is about, and give them a glimpse of why my financial need is great at this time, and demonstrating why I am incapable of working enough to support myself and depend upon the generosity of others.  But, for me, this video is the catalyst I needed to find self-compassion and to stop denying my tenacious work toward a life well-lived, but accept and proclaim and honor the fact that I am a warrior.

I am not weak, but stronger than almost anyone I know.  I am not lazy, but offer my body the rest it needs to heal and cope and survive.  I am not stupid, but suffer cognitive impairments due to my illness.  I am not reclusive, but work to foster and put energy toward only the best of relationships with the best and most supportive people in my life.  I am not crazy, but deal with multiple mental illnesses that affect my thinking and choices.  I am not playing the victim, but am coping with the ways that I was truly and deeply victimized by all manner of perpetrators.  I am not scared, but am learning to manage hypervigilance and overstimulation and anxiety caused by my diseases.  I am not giving up, but am fighting for every moment of every day to create the best possible life I can live with my challenges.  I am not begging, but I am placing my need before my community in the hope and the trust that provision will be offered in return.  I am not desperate, but I am allowing myself to be vulnerable and open and honest in expressing my struggles.  I am not whining, but I am telling the truth about the realities of chronic illness—and if you think that telling my truth is whining, note every time you complain about a thing, and see which of us expresses more complaint per actual struggle (I’ll bet on you, unless you are dying or also have chronic illness).  I am not lying, exaggerating, or making things up, but I am telling the harshest of realities without any sugar-coating to make it more palatable or acceptable to others.

And I know that it isn’t very palatable or acceptable to discuss any sort of true suffering in our society.  I know that we generally avoid pain, and we lie about who we are and how we are doing on a very regular basis, and we chastise or castigate or cast out any who express in their words or actions or being any hint of the lies we are telling or the avoidance we are seeking.  It is the reason we don’t make eye contact with the pan-handling person on the corner, or look down on the addict or the sex worker, or pretend that we “earned” our privileges and not that we are taking part in a system of injustice that is harming others and refusing helps for those in need.

I wonder, though, if it is possible to truly live well when we can’t look in the eyes of the homeless, or see the addict and the sex worker as our equal, and admit that we have privileges and seek to create a more just system that offers basic human rights to all people.  And I move toward an answer of “no”.  The more I identify with the least and the lowest of the society, and the more I hear people’s judgment and lies and excuses to reject my illness or my need or my deserving assistance, the more I believe that I am living well, and those others are living sad and sorry lives.

I know that I am living well.  I am putting every ounce of energy into being stronger, more able, less dependent, more mobile, calmer, more balanced, thinner, more educated, more aware, and just better than I was yesterday, and I am doing it in a way that doesn’t deny my experience, but embraces the reality with which I am faced and by which I am surrounded.  I am doing it without shame and with honesty and vulnerability.  And I am doing it in ways that recognize my privilege and stand against systemic injustices.  I am living well, and am proud to be doing so.

So, I am no longer afraid of or weighed down by documentation.  I’m learning to embrace the documents in my experience as proofs of transformation and hard work and betterment.  I’m learning to see every piece of paper as a document that shares life and fights disease and seeks equity and justice, even when those papers are also annoyingly redundant and seem ridiculous.  And I am also recognizing that every word I write here, and every thank you note sent, and every photo with friends and family and my dog, and every selfie of a new haircut, and every update or post or page that is put out by me or on my behalf or with me tagged is also documentation, and it is documenting a most beautiful life.

Bring on the paperwork, world.

Paper cuts or no, I am ready to keep on documenting and to keep on being the best and the most I am able to be.  And no matter how many diagnoses come my way, and no matter how many treatments and therapies are added to my daily routine, I am going to keep on adding documents that show a life of wellness—maybe not in my body, and maybe not in my psychology, but definitely in my spirit.

I will live life well and share a record that screams of legacy and not of lack.