Save Yourself

No one’s coming to save you. Save yourselves from turning earth into hell.

-Jay Brannan, “Goddamned”

My view from bed

Have you ever been told that it’s legal to neglect you?  Neither had I… until last week.  On March 28, law enforcement did a welfare check on me after of years of being isolated and ignored.  I’d say the law failed me, but it is working as intended.

Despite being a protected class in Oregon, I was told by an officer that it’s “not a crime to choose to live in filth and treat you like shit.” This was later confirmed to me in another visit from Adult Protective Services just yesterday; my family is under no legal obligation to care for me.  Since I am a client of an in-home care company and there is no legal documentation where my family assumes responsibility for my care, they can’t be held criminally liable.  Years of being cut off from food, being left alone and completely ignored, having to dump a handheld urinal into a trash can next to my bed when it gets full; none of this matters.  That says nothing about the condition of the house: trash everywhere, animals pissing and shitting wherever they want, food being left on unwashed dishes that have caused problems with maggots and mice.  Yet I’m told that despite the fact that I only have help four hours a day/six days a week, the other 20 hours a day that I’m alone with family carries no weight.  As soon as my caregivers walk out the door, so does any obligation to help.  To be honest, all these laws about protected class are bullshit.  What’s the point if I live in a home with family and they’re actively isolating me but there’s nothing that anyone can do?  It’s just another example of the ways society was built to exclude people like me.

Don’t misunderstand me when I say that this makes me question if there ever be a day when I matter.  I don’t mean that I question my self-worth.  I’ve hugged Lady Gaga, Beyoncé, and met Michelle Obama; I am well educated and deeply passionate.  That’s not me being egotistical, I’m simply proud that despite everything I’ve been through, I’m still an incredibly good person.  When I say I wonder if I’ll ever matter, I mean I wonder if there will ever be a day when the world takes seriously those of us who are largely invisible.  What’s it going to take for our daily lives to be valued?  I don’t have an answer to that question.  I wish I did.  I wish I could envision such a day but I can’t.  Over and over again when I thought that finally something had to give and my decade of loss and grief was coming to an end, I’ve been reminded that I’m still not worth it in the eyes of society.

No one’s coming to save you.  Save yourself.  That’s what I have to do.  The lessons from my heroes has always been that when the world turns its back on your suffering, you create the conditions for your freedom, you make a way out of no way.  Honestly, I’m tired.  To have the state essentially tell me “too bad” and then hide behind the most infuriating technicality wasn’t what I expected, but I shouldn’t have ever had even the slightest flicker of hope that anyone would come to my defense.  This is the reality of being disabled in America. Me against the world, that’s how it’s always been; that’s never going to change.