disability is about power

Disability is about power.  I have differences in my body and mind; I’m excluded from important aspects of life: social, cultural, financial.

Of course everyone has strengths and weaknesses.  Small differences are tolerated, like being nearsighted and able to correct that with glasses.

Big differences in mobility and how our senses work, not being able to do basics of life like dressing, washing, and feeding ourselves, and not being able to work for money–all those are disabilities.  People with big differences are treated with little patience in the US because our culture is set up that acting normal and making money are what’s important.  Money is the main value.  Honoring all beings is optional. 

Of course we all differ in what we can do.  But disability is about power because once the differences are significant enough for me to be pushed out of public places, workplaces, schools, demonstrations, meetings, and places of worship, I become impoverished.  I have less access.  I lose income, services, support, friendship, love, and community.

Then my health might deteriorate further as I’m being left out of connection and the joys of life.

No, it doesn’t have to be this way.  We can be honest, learn unconditional respect, and make a better world for all of us.

who shows up

If we think about who is alive right now, the housed people who have money and transportation are front and center.  Sometimes they own a house or two.  Often they’re abled and white.

Then there are people who are under-housed and houseless, with no transportation except maybe an unreliable bus and unreliable bus shelters, with not enough money to cover basics.  They are fading from view.

There are people trapped in prisons, jails, group homes, hospitals, assisted living facilities.  Prisoners are imprisoned mostly because their needs are so far from the norm that they did something extreme to survive.  Patients-prisoners’ needs are different too.

Then there’s the people who are stuck in their homes because they don’t have what they need to go out.

If you visit a place of worship, look around and see who’s there.  Do they have money, a car, fashionable clean clothes?  Did they come with family?  Did someone bring them because they would be unable to attend alone?

imagine

Then use your imagination to think of who isn’t there.  Imagine their bodies transparent with edges of dotted lines– it’s a lot of people.  It’s the same amount of people who are there, like ghosts filling all the additional space in the room.

• people who use a wheelchair but don’t have their own van to carry it
• anyone imprisoned by ICE, the criminal injustice system, a group home, old folks home, psychiatric facility…
• anyone who makes weird sounds
• and people who smell strange –not there because they would get mean looks
• people who can’t hear well enough to enjoy the experience, so they stay home
• immunocompromised people who can’t afford to be near the unmasked because they could die from a common germ

The people who show up are the people who can act normal and have resources including support.

Disability justice is about creating the conditions so more people can show up than the people with money who have the most power.  Disability justice is about being real about ramps, interpreters, transportation, shifting norms, being intentional, and loving everyone, even people who make weird sounds and might not be on the same wavelength.

acting normal

Acting normal is a big deal.  Some people like me are so-so at acting normal.  There’s a whole range of how I can be treated for stimming, crying, laughing at the wrong times, using assistive devices like headphones and trekking poles…  Sitting on my hands takes so much energy, and there’s huge recovery time from the stress of turning myself down.

Ming’s narcolepsy means they are often standing up at events and gatherings, which some people see as a problem too.  And Ming is misunderstood as quiet or uncaring when they’re falling asleep.  It sounds like no big deal, but being half in a dream means Ming has a hard time speaking out for their values and advocating for our needs and perspectives.  Especially in situations where power extra-matters, like meetings.

Acting normal is so prized!  The consequences for not being able to act normal vary from mild disapproval, to being told to never come back, to being arrested.  Disability is about power, and I’m sorry power is so rarely shared in a fair way.

culture

Disabilities are specific to a culture.  I can imagine a culture where people with mobility issues are respected like any other person, so there are always wide aisles and a place for the wheelchairs to park. Wheelchair users are expected, so entrances and bathrooms are accessible.  Wheelchair users are planned for and accounted for, not cause for organizer panic.

I can imagine a culture where people who hear voices like me are treated as valuable truth tellers, in deep with God.  Not like we’re scary, dangerous, and need to be heavily sedated in order to stay easy for other people.

Disabled people are not easy, according to ablism.  But how did being easy get to be a requirement?  We can study the history of horrific ways disabled people have been treated, from extermination with eugenics to forced sterilization and more.  Mostly I think the reason is capitalism.  Doing everything as cheaply as possible to increase the profit for whoever is on top, means cutting corners.  Keeping janky bathrooms that wheelchair users can’t use is so much less expensive than putting in respectful bathrooms where everyone belongs.

People say we need priorities about what we spend money on, and not that many people are in wheelchairs, so it’s ok.  But that’s a lie.  Tons of people are in wheelchairs–you’re just not thinking about them because they’re not in front of you.  They’re stuck at home.

example of how disability is about power

When I used to go to the psychiatrist, if I brought another person, the psychiatrist would ignore me and talk to the person I brought.  I have schizophrenia-umbrella “chronic, severe mental illness.”  Hearing voices plus serious mood swings means that to most psychiatrists, I’m not a person.  They think I can’t talk reliably about my experiences, and it would waste their time to ask me questions because I can’t be trusted.  The presumed-abled person I came with is the one to ask because they are probably my handler, competent, the reason I was able to show up.

Once a psychiatrist believes I’m not worth speaking to and not a person, I can’t do much to change that.  What’s their scale? What markers would show my worth?

If I mentioned I have a Master’s degree, they would probably think I was telling stories.  Would an IQ score impress them?  They see before them a pathetic loser because that’s what they expect me to be–they assume my life is TV and frozen dinners.  They don’t ask what life I want to live and help me get there.

Sad survival is the only possible goal a psychiatrist sees for me–they medicate the fuck out of me so they don’t need to think about me.  I won’t harm myself or others if all I do is sit around and sleep.  When psychiatrists encounter people like me, sedation is their default.

Of course they are harming me, by sweeping away my actual needs.

discomfort

It hurts because God put me here to be who I am.  If a ruckus needs to be caused, let me cause it.  I can see things you can’t see, and hear things you can’t hear.  That doesn’t make me bad.

If you feel threatened by someone who has a different kind of knowing than you do, please work on yourself.  Please don’t take away what makes you uncomfortable.

Making people uncomfortable is a reason disabled people are pushed out of spaces by ableism.  If it hurts you to encounter who you might become…  Or if it hurts you to encounter people who make you think of the ones you abandoned, the family members you stopped inviting to the BBQ.  Or who you left to die by the roadside in the broiling heat or freezing cold, living in a tarped tent with a shopping cart and a starving dog?

If that hurts to see, then be uncomfortable.  All beings are somehow your responsibility.  We’re all related, and love is bigger than fear.

what I really believe

All people deserve care and love.  I am so much more than you can tell by looking at me.  I don’t want to dismiss anyone, and no one should dismiss me.

Disability is about power, like race is about power, as well as gender, sexuality, class.  It’s all mixed together.  How fat I am affects how doctors including psychiatrists treat me also.  And if I’d had money, I would have gone to a whole different clinic where the psychiatrists might have seen me for who I am.

I also believe that most people are boring because they’ve been trained that boring will help them get a good job.  The weird has been beaten out of us.  There’s so much more we can do, learn, create, feel, experience, and know.  Normal is over-rated.  The biggest problem in the world is how narrow a range of being is acceptable.

Thank you for supporting me as I tell the truth, including the truth about disability.  Let’s increase the range of what’s acceptable.  This is the flier for the dance I’m facilitating next month.