Freestyle FridayS
Guest Speaker Art and Poetry
Radical Self-Care
By Maria R. Palacios
To the disabled, self-care means
surviving…
surviving poverty,
surviving ignorance,
surviving segregation,
surviving
the invisibility forced upon our lives.
To the disabled, self-care means making sure
we don’t die
of hunger,
we don’t die of sadness
we don’t die alone, abandoned, and forgotten
in some shit-hole nursing home
that paints a peaceful transition to heaven,
but is a living hell behind closed doors.
Self-care means we force open the doors
that were made to imprison us.
It means breaking the oppressing chains
that hold disabled people down
and acknowledging that none of us can move up
when others are still down.
We must keep each other alive while the nondisabled world
wants us to die, disappear, become extinct,
a thing of the past, at last, eliminating
the infirm, the broken,
the undesirable.
Self-care means unlearning the bull-shit we’ve been told
about our disabled bodies, the lies we’ve been forced to wear
in nondisabled costume,
forcing us to try to fake
able-bodiedness we do not have,
find humor in our struggles
while feeling ashamed of our differences.
Self-care means we learn to love our differences,
and recognize
that we have our personal greatness as a gift.
It means we know how others lift
our bodies like a heavy cross they must bear
while we endure the pain of their ableist fears.
For the disabled, self-care means we undress our own fears
knowing that doing so will hurt.
It means letting others know the hurt
caused by their actions,
caused by ableist words casually thrown
to describe our bodies.
Self-care means we forgive our bodies
for not walking, not talking, not seeing,
not hearing, not thinking, not acting,
not feeling, not being
like the boring normals who consider themselves to be better.
Self-care means a better
understanding
of our right to exist,
our right to resist, our right
to love ourselves without guilt.
Self-care means
we forgive those who trespass
against our rights,
but do so by making sure it doesn’t happen again.
Self-care means knowing
it will happen again, and again
and again,
and knowing we will again,
and again go back
to the battlefield
to slay the dragons of ableist crap
that trap
disabled people
into believing that the normies know,
more than we do
about our bodies and our needs.
Self-care means we get to explain our needs
to the doctors, to the attendants,
to the social workers, to the concerned relatives,
to the “professionals” who think they’re experts at living our lives.
Self-care means remembering all that
when the only thing we can remember
is the past due bill on the table,
and the fear of not being able to make ends meet
this month, or the next, or the next.
Self-care means telling ourselves that next time
will be different,
although we’re not sure how.
Self-care means we know how
to survive because it’s something
we’ve simply learned to do.
Self-care means asking for help knowing it’s ok to ask.
It means asking for help,
and asking exactly for what we need
and without feeling guilty for it.
Self-care means remembering
that we don’t have to apologize for our needs.
Self-care, to us, means allowing our wounds
to heal out in the open.
It means knowing we don’t have to cover up our pain,
but nor do we have to disclose it
in order to validate our truths.
Self-care means our relationship with pain,
like our relationship with God, is personal.
Self-care, when we’re disabled, means,
learning to self-regulate positivity because
the non-disabled world only sees negativity and pity,
instead of strength and love.
Self-care means we are aware of our personal strengths
but also know we don’t’ always have to be strong.
Self-care means letting the tears flow in order to heal the soul.
Self-care means we know it is the soul
through which we exist in our bodies.
It means we love our bodies
but are fully aware of how fragile they can be.
Anybody can become disabled.
Everybody will become disabled.
Those are truths nobody wants to hear.
Self-care means, that when we do hear those truths,
we already know that life goes on,
and that being disabled is not the end of the world,
but it is a world constantly under attack
by ableist oppression.
Self-care means we don’t forget
that ableist oppression is real
although it might not always affect
all disabled people the same,
the same way racism doesn’t affect
all people of color the same.
Self-care, when we’re disabled, means
addressing the crime of neglect and abuse
and the use of ableist practices
as society practices
divisiveness and oppression in the name of what’s good for us.
Self-care means we know that we are the only ones
who can truly know
what’s good for us. It means
we own our bodies even
when the Medical Model broken definition of who we are
may say otherwise, because when we’re disabled,
owning our bodies is the most radical form of self-care and self-love
we will ever practice and exercise,
and it will be the most criticized and
revolutionary action of our lives, and the non-disabled
will continue to fight for the right to live for us
while we exist in our non-normative bodies,
and our non-conforming minds.
Society whines at the outcry of our rebellious advocacy,
but rebellious advocacy is
how we practice self-care.
We practice self-care
by constantly performing CPR on our broken dreams,
by remembering that others will forget us
because they always forget about us
although they pretended to remember us
during the evacuation drill
where fake disabled people played our part,
and real disabled people were left behind because…well….
we must never forget
that others will not remember,
but they will always remember to tell us what to do
and how to live.
When we’re disabled,
self-care also involves telling non-disabled people to back off
and fuck off, if we must go to that extreme.
Self-care, when we’re disabled, sometimes requires extreme
measures
like acknowledging the pleasures often denied to us
in the name of normality.
Self-care involves the beautiful abnormality
of crip-sexy,
and they way we define sexy,
and claim the power of our bodies
as the wholeness that makes us complete.
Self-care means
we don’t have to compete to be less disabled
in order to prove our worth.
Self-care means we know we are worth the chance…
the chance to love,
the chance to share,
the chance to be part of the world that fears us.
Self-care, when we’re disabled, involves all that
while still managing to squeeze time to imagine
a relaxing bubble bath and a glass of wine,
happy sex with somebody we love, or some of the other
luxurious rewards of the non-disabled world.
When we’re disabled, self-care means adding those thoughts to a crip list that reads:
a) Find accessible bathroom with big luxurious bath-tub
b) Budget wine into next shopping trip
c) Have happy sex…(although not sure what that is, but thinking about it makes us happy, and self-care also involves happy thoughts.)
And happy thoughts are often at the core
of disabled self-care because
we have to believe others do care,
although deep down we know nobody gives a shit,
and if they do, it is with an ableist clause
of having to accept something in return,
maybe some unexpected prayer,
or unsolicited advice,
or maybe forced help that denies
our humanity, and disrespects our independence.
Self-care means having to remind ourselves
that disability never equals
the devaluing of our lives and our right to exist,
and the right to make community
within a community of our choice.
Self-care means we know we have a choice,
and a right to choose
and nobody has the right to use
our differences as an excuse for the denial
of our human rights.
When we’re disabled, self-care means
constantly educating others
about our basic rights,
always repeating ourselves
and our realities out of mere necessity
because if we don’t ,
the non-disabled world will pretend we don’t exist.
Self-care means we resist.
We say yes.
We say no.
We own every aspect of our lives, even
when every aspect of our lives may depend
on non-disabled assistance.
It means we project our power from within
letting the normies know
they don’t have the right to decide for us
unless we give them permission to do so.
Self-care means borrowing able-bodiedness
without losing touch with the fact
that we are still in charge.
Self-care means we identify ableism
and treat it as such.
It means we say “enough” when it’s been too much,
and we do it without hesitation
because we know we have the right to say: Enough!
Enough ableist lies.
Enough ignorant remarks.
Enough pity loaded Amens.
Enough expectations of inspiration.
We do not owe you space
in our personal space
simply because we may not fit
your boring definition of normalcy.
Self-care, when we’re disabled, means
having to flourish in arid terrain,
in constant drought and constant doubt.
It means recognizing that our thorns
are part of who we are,
and while others expect us to die,
we become cactus, and the prickly pear
is the forbidden fruit we bear.
Paradise
in the desert of your fears.
Self-care means we sustain and support one another.
We lift each other up
knowing
that unless we do,
we WILL be forgotten.
We repeat this in our heads
over and over because otherwise, we, too, can forget.
Ableism is always lurking,
looking for a way in,
knocking on the door of our own identities,
trying to make us forget
that we have the right to be ourselves
in our personal liberation, in our definition of self
and whatever liberation means to us
as disabled people
with our own extensions
of, often, half-narrated sections
of truths we are still learning about ourselves
because being disabled is just one aspect of who we are.
This is true for everyone,
but when we’re disabled,
every other aspect of ourselves goes out the window
because, society’s tunnel vision of our disabled lives
only sees brokenness in the narrative of our stories.
Self-care means we re-tell our stories
until they get it right,
until our voices are heard,
and until the various parts of who we are
become evident to ourselves
and to those we negate our positive crip identity
and our capacity to love.
Self-care means being proud of our differences,
embracing our uniqueness,
celebrating our power,
knowing that while some are fighting
for the right to bear arms,
disabled people are still fighting
for the right to bear life,
for the right to exist, and the right to see ourselves
in future generations.
Self-care, when we’re disabled, means
fighting for the right to reproduce, the right to be a parent
without it being so apparent
how others hate the thought of that.
Self-care means ignoring the ableist lies
that tell us we can’t do it, ableist lies that attach shame
to the word disability taking away our ability
to nourish our self-esteem.
Self-care means
trying to find the time to rest
while the world thinks that
being disabled means that rest
is all we get all the time because we are broken,
and can’t work
or contribute, or find success as is it measured
by capitalism.
Self-care means learning to survive capitalism
through solidarity, and the sustainability of hope,
because it is only when we are there for one another
that somebody will be there for us
when the time comes for us to survive.
Those of us who have been there already know that.
We stand by the entrance of the temple
calling others to the table,
teaching the new ones
that they’re able to move on, to reach out,
to realize that the light is not out
although darkness is real.
Self-care is about survival.
When we’re disabled,
self-care is, always, about survival.
It’s about economic justice,
food justice,
sex justice,
social justice,
and making sure the movement
and the march doesn’t move on without us
because unless we are there to remind them, they will
move on
without us.
Self- care, when we’re disabled
is a nonstop advocacy ride,
and until we are no longer oppressed by ableism,
self-care will continue to be
just another definition
of privilege.
Lives Worth Saving
By Maria R. Palacios
Forget us not.
Please don’t leave us behind when the world falls apart…when the dam breaks and the
waters rise,
when death is a threat to all, don’t leave us to die alone
do not make us feel
forgotten.
But you do
make us feel
forgotten.
You abandon us and leave to die
while telling yourself it’s the only choice you had.
The eradication of disabled people has been normalized.
Our death is seen as a compassionate act.
You justify killing us or letting us die because
in the non-disabled lie you tell yourself,
disabled people are better off dead.
We are the lives you throw away
the ones nobody wants, the broken bodies, the broken minds
lives you erroneously believe have no meaning,
but what is the meaning
of life?
And who made you God when you decided to consider us disposable?
How is it possible that you can just leave us to die?
But you do, and we live in fear.
We live in fear because we know that any of our disabled lives
could and would be considered disposable when the crucial moment comes
to choose whether to help us live
or let us die.
We live in fear because we know how the hierarchy of power
would put our lives in a row and choose the least disabled
and the least brown, and the least poor…
and rescue only the ones they considered worth saving.
How and when did we become human waste?
When and why did you decide our lives have no value?
Disabled lives are always at risk.
Living while disabled is dangerous.
We exist in a world too ready to throw us away,
too ready to label us broken.
We have always known that, because knowing that
and being aware of the world’s indifference is how we stay alive.
When COVID happened,
disabled people already knew that we’re not only vulnerable to COVID,
but also to the fear driven ignorance of the non-disabled world…
we had to remind each other
that part of our survival plan has to involve a proof of life….proof
of quality of life so that we are not tossed into the pile of discardable humanity created by the non disabled.
Activists in the disability community teach and remind each other
to write with permanent marker phrases like:
“My life is worth saving.”
“I have people who love me.”
“My disabled life has meaning.”.
“Please don’t let me die.”
We teach each other that
in case we end up
in the hands of some white coat wearing non-disabled
young medical model minded professional
who measures life’s worth in non disabled terms.
Disabled people know we have to fight for our lives
and for our right to live
because the non-disabled
are always ready to let us die
or forget that we even exist.
And they do forget that we exist.
They abandon us to struggle alone
or try to contain us in institutions
where it’s easy for them to pretend
they’ve done everything they can
to save us.
To the disabled,
being institutionalized is a fear too real to just set aside.
We fear being thrown
in the dungeons of an orphanage, a prison, a nursing home.
And we…even we, forget there are disabled lives
contained in institutions fighting to not become
emotionally institutionalized, looking for ways to break free,
to not lose their identity, their humanity.
Nobody purposely lives in a nursing home,
but some have no choice, but to make that a home;
and there are no magic slippers able to transport them back
to another version of home —one that doesn’t involve
being forgotten when the world is falling apart.
COVID sacrificed a lot of lives,
even lives that could have been saved,
lives that should have been saved…
not COVID positive disabled people left to starve alone
when others failed ill…
COVID positive disabled patients being denied treatment,
nursing facilities
where people were sent to die while not caring
there were others who were paying for this with their lives.
Nobody really cares about disabled lives.
They don’t care about how we live.
We cannot expect them to care about when or how we die.
They think letting us die is a service to us…
lead us to heaven, end our suffering, put us out of our misery.
As you watch us die, from the false safety
of your non disabled privilege.
We urge you to ask yourself
who will be there for you
when the world falls apart, when the dam breaks, when the waters rise?
Will you still be non-disabled when that moment comes?
Maybe only then
you’ll realize how ableism makes lives shatter.
Maybe then you’ll realize
the lives you threw away did matter.
When that moment comes, we’ll be there for you.
We’ll be there to help you, and guide you
and remind you that our disabled lives have always mattered.
Institutionalized lives,
Imprisoned lives,
Disabled lives
Nursing home lives
All those lives matter
Lives in nursing homes still matter!
Please do not forget us. Please don’t let us die alone.
Please remember our humanity.
