I wasn’t raised to be better
I don’t want to spend my life in bed
This isn’t something I choose
You hear about being in bed
And not having to work
And you feel a moment of envy
But what you want is a vacation
You could use a break and a nap
You want to escape explotation
Because capitolism isn’t fair
But disability isn’t better
Not working means poverty
It means isolation and struggle
You don’t envy chronic illness
You don’t understand not having choices
You can push through a cold
And not end up in pneumonia
You don’t want these deficits
You want a nap and a vacation.
Just because you can’t comprehend
How I exist or manage to survive
Does not give you right to interject
To force yourself into my life
What you see as me struggling
Is my fiercly independant spirit
I’m not a lost child or pitiful creature
If you insist on perceiving me at all
Speak to me like you would a stranger
Respect my space and right to fail
I didn’t invite or ask for your help
You’re not my helper or savior.
The persistant tickle in the throat
The burn in the middle of the chest
The expanding deep in the gut
The crackling of bone in the joints
The pulsing in the balls of the foot
The tight swollen itch of the skin
The pressure of sinus in the face
The sting of hot and irritated skin
The knot of contracted muscle
The little pains all add up
And eat away at my day.
The world made us con artist
You know the world won’t believe
You can either hide the truth
Or exaggerate reality
There is no win in truth
Being authentic is a trick
Vulnerability is a risk
We loose either way
All we can do is survive
Hope the world doesn’t tear us down.
“Don’t make it your personality”
Probably because it’s uncomfortable
This is their weakness, not ours.
I’m trying not to blame you
For not understanding me
I try to provide metaphors
To explain lived experience
Of life with chronic illness
Because my simple words
Are dismissed as complaints
As if we all have the same life
But we are not the same
When I speak of fatigue
I’m not talking about needing sleep
I’m talking about a lack of recovery
I’m talking about limited energy
That sleep doesn’t refresh
You translate this into your experience
That life is tiring and overwhelming
You belittle through ignorance
I don’t have the energy
To waste being mad at you.
Fighting for our needs
Should be ridiculous
Instead it’s common place
Necessity is monitized
Needs are considered priveledge
A priveledge with a pricetag
Capitalist make money off needs
A rare few get to be comfortable
The rest of us must fight
The struggle becomes expected
Strength becomes required
Life is treated as a battle
And not everyone gets to live.
Individuals can be kind
But put them is a group
And they become a gang
Groupthink brings out the worst
Petty behavior becomes standard
Hating on outsiders is the norm
When in plural, people are bad
And the desire to join in
Can make the best person less so
In plural, people are mean.
I don’t want any person to die
But capitolism emboldens preditors
At what point do I get to see them
Seperate like they see us
As I am prey in the world of money
Should I wish long life on my hunters
Should I give them grace
I’m the face of my servitude
Or can I forgive myself
For wanting monsters to die
For valid anger at exploitation
I try to forgive my petty thoughts
I don’t want them to die
But I do want to remove their power.
For those who don’t have it
Health is not our friend
It isn’t even an enemy
More like an estranged relative
Judgemental and unkind
Judging us on some standard
That we can’t fulfill
Making us feel small
Tricking us into believing
That everyone else is fine
We’re the painful exception
A sore thumb
In a world of thriving fingers.
Most of life is morally neutral
Harm can occur without intent
It can be twisted to encourage harm
Power is a negative influence
And blind obedience isn’t a virtue
My advise is common sense
Which isn’t often common
Try not to harm yourself
Try not to do harm to others
Trust what others say of themselves
Don’t assume you know best for all
Pay attention to cause and effect
Try to be a person open to differences
Understand life is complicated
Any sermon that suggest otherwise
Was probably written by priveledge
Was spoken with intent to oppress.
Choosing not to see
You act like it’s small
You encourage keeping it unspoken
Through your opacity
You lack of action is insidious
By keeping it hidden
You are the problem.
The law doesn’t stop discrimination
The letter of the law
Requires reasonable doubt
Hidden things aren’t always provable.
I know better than to trust a man
Particularly a cis white one
They’re used to their priveledge
Their reality is an echo chamber
They expect to be deferred to
They want me to be a good girl
While my nature is iconoclast
They want to fight and win
While I want to survive
I avoid, not looking to confront
I don’t have to engage
Under rules they define
My defiance is silent
My rebellion is on my terms.
I must remove the colonial in me
Must remove misogyny
Don’t want to act like a man
As men are predatory
They choose to ignore priveledge
I’d have to be a bully to fit in
And dismiss delicacy as a joke
I don’t want to be a man
Or to have men’s rights
I want to be a woman
With my own rights
I want all people to be equal
I want priveledge removed
So I must start with myself
Removed priveledge requires loss
In the form of giving back.
They didn’t ask about my insomnia
Sleepless three days after my stroke
They wake you every 4 hours
And don’t close the doors
They asked about food preferences
But couldn’t answer my questions
And kept bringing me food I couldn’t eat
Because I have food allergies
But since it wasn’t anaphylaxis
They didn’t care if I shit my pants
While trapped in a bed after my stroke
They were anoyed when I spoke up
So no sleep and not enough food
Three days after a stroke
In transfer they messed up my meds
So I was in pain all the next night
Sent entertainment director for complaints
I wasn’t looking for attention
They just couldn’t fix my issues
Their system was broken
And I had the audacity to point it out.
I don’t understand your lack of pain
They speak in platitudes
Profit has a tangible downside
People think medicine is care
And drug companies seek money
Human need and money are in conflict
Money undermines compassion
Requires doctors to reach monetary goals
The money is winning.
You can’t defeat a bully on their terms
They play a game of likeability
They count on your shame
But you can defy the game they play
Embrace their joke as your own
Not to make them laugh with you
But in deciding you like yourself
Be okay with your awkward and wierd
Make their mocking foolish
Because you know who you are
When you embrace your identity
Your answer becomes, “yes, and…?”
Because you aren’t ashamed
If they can’t get a rise out of you
They’ll likely loose interest
What’s the point of teasing
When no one cares.
Most days I don’t hate people
I remember we’re flawed humans
Who rarely intend to harm
And the people in my life
Are mostly kind with intent
But then there are the exception
The loud and ugly minority
That make me doubt humanity
They bully and bluster and pontificate
They find joy in putting others down
And I really hate those people
I feel small in their angry presence
They hurt my feeling with intent
They make me doubt the world
I know memory will fade with time
Distance will bring me perspective
But today I really don’t like them
Still scorched by their recent kiss.
Would you like to be spoken over
Have your story told by someone else
Someone that didn’t ask permission
Didn’t even ask for your take
Telling a second hand impression
Speaking to experience they never had
Casting you as a paper cutout
Good or bad or childlike or inspiring
A being without dimensions
They even tell you the words to use
How to describe your own story
This is the disabled experience
Having our stories told by others
Don’t be an advocate in place of us
Nothing about us without us.
I’m not a winner
my hard work hasn’t lead
to some great reward
I’m just getting by
I haven’t been blessed
by easy chances or ready success
I’m very aware that life is hard
I don’t have lots of friends
and I’m not easy to know
popularity isn’t something I have
or even something I strive for
I’m terrible at meeting new people
experience has taught me that only a few
won’t blanch when they see the real me
I’m not a pretty girl
you could call me big or bold
but never dainty, graceful, or serene
I’m stuborn and prideful
I might know how to play the game
but I can’t stomach it
so I sit on the sidelines
I won’t give everything
so that everyone will like me
I’d rather like myself
Maybe I am to be pittied
I don’t have that much
just my self respect
people I’d trust with my life
and a passion that drives me
measured against the world
I’m not a winner
some might even go so far
as to call me a loser
but at least I’m a happy loser
instead of a depressed sucess.
Polite society is ridiculous
Assigning arbitrary behaviors
Enforcing made up rules
It may teach some to fit in
But it’s end purpose is exclusion
Polite isn’t kind or compassionate
It’s duplicitous and backhanded
A lack of social knowledge
And it culls you from the herd
There is no survival purpose
Just subtle ways to harm outsiders.
Don’t talk to me about bootstraps
I was raised in sneakers
And my laces won’t hold my weight
But that’s kinda the point
“Pull yourself up by your bootstraps”
Is the dismissive shorthand of apathy
The saying is a posture of priveledge
As if misfortune is a personal problem
As if an independent spirit is the cure
Even those born with boots
Can’t pull themselves up by straps
The fortunate prescribe a magic trick
An absurd act of impossibility
Knowing that boots don’t trickle down
Knowing that straps cant make us fly
We are held down by our own feet
Our absurdity is asking for help
Some extra hands to lift us up.
This is harder than it sounds
Work is presented as not plesant
The social contract doesn’t suggest joy
Work is a pain we must endure
But life is too short to hate
You give a job so much time
Aim for minor annoyance
Or find a way to be grateful
Find a way to settle into acceptance
The gamble against misery is worth it
Find compromise through choice
Find a way to be less miserable.
Youth, beauty, and health,
You can stun flies with fumes
Your vinegar may be fragrant
But it isn’t exactly attractive
It only captivates other stinkers
Honey is sweet and lasting
It sparkles in the sun
If you dont want enemies
Try to be less mean or cruel
Consider a different fuel
Try fake it til you make it
Even if the cake is inedible
You can still layer it with frosting
It’s not that flies are smart
But they don’t return to bitter.
I don’t owe corporate greed
My sick days are owed to me
They are a part of my liberty
I deserve to rest and recoperate
I’m not stealing from billionaires
By having the common cold
Or needing a mental health day
Or taking care of family
The news tries to spin it
Like sick days are theft
That any lack of productivity
Is a corporate loss
From their mountains of wealth
But that’s pure gasslighting
A spin and twist of the truth
Eugenics and abelist rhetoric
I see past their con
And wonder how anyone buys it.
Let me be the one you respect
Not the one you’d sext
Because I’m past the age
Of being a piece of ass
I’m old enough to be a friend
Glad to let the shine wane
I don’t want the polish of new
I need to be a colloquial term
Deem me your “Ol’ girl”
A term of sexless endearment
Removed from sex appeal.
Men don’t want wide ass attitude
They might find defiance interesting
A passing delight but not a wife
Not trying to trap a mediocre man
Not to starve for acceptance
I’m supposed to be gracious
Understanding and forgiving
Of my oppressors
Because they are human
Because they don’t know better
And me questioning their actions
Doesn’t fit their narrative
I’m supposed to be nice
And play the game silently
While they demean me
While they ignore my needs
Because speaking up is rude
Being loud is unseemly
And when they pile my plate full
I’m supposed to smile at the shit
The steaming pile they give to me
And act like I’m eager to eat it.
Forgiveness isn’t for the other person
It’s about what we carry around
Do we live in anger and frustration
Do we let resentment run our life
Do we let pain stain our everyday
Or do we find a way to let it go
A boundary isn’t a rule you set
It’s an action taken in responce
When a request is actively ignored
A rule is asking for for respect
But when someone refuses to comply
A boundary is consequences
Anger is a fierce fleeting feeling
We can give the flame a purpose
Or choose to let the fire die
When we’re intentional with that heat
We’re less likely to get burnt.
There are two types of hypochondriac
My PTSD is based in reality
Being miserable is normal
Suggesting you ignore the bad
But authentic positivity is a habit
Choosing to see the breadcrumbs
On an seemingly empty plate.
I pass as able-bodied
My experience is not common
But I’m not going to convince them.
Be yourself isn’t always good advice
The stories you tell of your life
Don’t leave you in a good light
You think I should agree with you
That the villain was the other party
Maybe they aren’t appealing cohorts
But the part you played was worse
Investing into a narrative of revenge
As if bad behavior deserves more
Stories of malice are a red flag
A warning I should protect myself
You had the option to walk away
Not to return their tit for your tat
At least now I know the future to come
One day I’ll be a villain in your story
Unless I’ve earned that title already.
Maybe I’m asking too much
Taking my truth at face value
Eventually the cast comes off
Eventually you get better
The law doesn’t prosecute implicit bias
In the case of discrimination
The burden is on the victim
To prove intent of wrongdoing
They are allowed to discard us
They just have to disprove intent
At will firing is unethical
You don’t think you want to kill me
You wish me to silence
As I remind you of mortality
You wish me to be invisible
You can’t imagine what you can’t see
You wish me to be magically healed
But you deny to wishing me dead
You believe yourself sympathetic
Long as I don’t turn a mirror on reality.
Elizebeth Turnquist 