Monthly Archives: February 2021

MY STORY ONCE AND FOR ALL~~AND WHY I NEED HELP TO SURVIVE THE REST OF WHATEVER YEARS I HAVE LEFT TO LIVE ON THIS EARTH

The thing is, I was born.
I exist.
I breathe.
I live.
I matter
As I am.

But, ya see, here’s the thing,
I was born disabled
In May of 1960 in a time when no one knew what they know now about being disabled.

Back then, being disabled was thought of as both abhorrent,
and we who were disabled, were to be pitied, scorned, and put into the back rooms of our houses, or put into institutions.

Growing up, I never knew I’d grow up to go onto Facebook
And find out that there was a movement
A disability rights movement
And a neurodivergent movement
that says being disabled and autistic is OKAY

Yes, I was born Autistic
With co-occurring learning disabilities
And cognitive disabilities
And what I always was told were emotional disabilities
and a perceptual disability

On top of that, I was born with crossed eyes (strabismus)
I had eye surgery at the age of 2 1/2 years to correct this
but still was left with my right eye as my “lazy eye”
I still remember that surgery
and how I was pinned down afterwards
on my hospital bed
blind, unable to see due to patches being put on both of my eyes

That early childhood experience was my first in a lifelong time of trauma
Trauma after trauma after trauma
Because my family, and then schoolkids,
could not understand why I was both giddy silly over lights, and certain things
and why I was frightened of so many, many things that none of my other siblings were frightened of

I was terrified of bright lights
flickering flourescent lights
Cats and dogs
Swimming in a swimming pool
I was too scared, terrified, to learn how to ride a two wheel bike
I was too scared, terrified, to learn to roller skate
Or to play ball because
Instead of catching the ball, I would get hit by the ball
I was even scared, terrified, of the loud static-y record player we had
And our loud radio
And it all hurt
Because all of this was all literally scary to me

Instead of understanding me, I got ridiculed by my siblings
They would use these fears of mine to control me

Growing up, I never knew exactly what was “wrong” with me
I just knew that I was different
And because I was different, I was Less-Than

I knew that I was not at all the normal as apple pie that [I was always told] that all of my brothers and sisters were

I went to special ed classes from grades 1 through 4
then was put right into a rural school with no special ed classes
in 5th grade
when we moved to the mountains east of Santa Maria
I was not accepted at school or at home
Both places I was teased harshly and ridiculed
Or patronized and treated like a little baby
To be pitied
But still Less-Than

The stress of never being enough
Got to me physically
And I developed facial hair
Yesterday, my mom told me that I never had to work
But the reality was that
I was never able to work
Because of my facial hair
And the disabilities I had
And the way I was treated as Less Than
And the way it all manifested inside and out
In my body and brain

And high school
Was even harder
I kept running away in my sophomore year of HS
to get away from my STILL mean hot tempered father
and all of my mean siblings

I desperately wanted to go where
I would find acceptance
and belonging
I did find that in a family who moved near us
in the mountains so I was always at their house
because they made me feel like a person

I was ridiculed also because I knew by the time I was in 7th grade
That I was sexually different
as well from all of my peers
I just didn’t understand then
what it meant to be
Non-BInary, Queer, and Bi-Sexual
Because back then, in the 60’s and 70’s, it was
still highly frowned upon to be
homosexual / transgender / non-binary / genderfluid.
And I never had anyone I could discuss that with
Again, because being LGBTQ in those days
Was still a No-No.

But at home, it was hell, always hell
Because I either had to act silly,
or just clam up into a shell
In order to survive the harsh narrow mindedness of my family
And my father was always scolding
always yelling in a rage at me
I was beaten by him as a child
and punished for things like looking at my shiny hair
and swigging my arms
and using slang
and listening to rock music
and for being too silly
I was punished for my quirks
Always shoved away, punished, and scolded
Then later on in my early 20’s I got diagnosed with
paranoid schizophrenia by an SSI appeals psychiatrist

I went on SSI (Supplemental Security Income) when I was 21,
because of my facial hair,
and then what was thought to be mental disabilities.
I knew I wasn’t paranoid schizophrenic
Because I didn’t have those symptoms
But it was what they labeled me with at that time.
No one thought to say”Aha, she’s autistic!”

And my family never understood me or supported me
Instead, I spent my growing up years
sheltered and shielded from life
from being able to think for myself
I basically never got the opportunity to work
and to be able to get off of the government benefits
I have now been living on since the age of 21.

I grew up never getting to party, or have real teenage fun.
I have still never even gotten to attend a rock concert.
I was alone and had very few friends in high school.
A huge group of jocks made fun of me my entire time in high school.

I lived at home with my parents
Until December 1987when my parents
were finally able to afford to
pay to rent a small studio apartment for me here in town

I began to thrive there at my first apartment
Because I had learned very well
how to mask my autistic traits,
I was accepted by my family then
but even so, none of them ever came to visit me
when I lived there, except for my mom and grandma

I even tried to get help through CA Voc Rehab so I could work
But like everything else, that too failed
due to the little real support I had from my family.
Then my father had a stroke in July of 1989
And in 1991, I had to move to one of my sister’s cottages
where I again got thrown into being taunted and terrorized
so badly by two grown college aged girls next door to me
Then more neighbors in nearby auto shops and
other businesses ganged up
And began to bully and torment me also.

And it began affecting both my mental and physical health to where today
I now have lymphedema on both of my legs
A lymphedema leg lump the size of a basketball on my left inner thigh
and now I am in end stage stage five kidney disease

My family has abandoned me.
My eldest sister moved to Arizona in 2001 with her husband.
My other sister moved to Idaho in 1991 with her husband and family
followed my my youngest brother, in 1995 and his family,
then my parents in 1996
then my eldest brother and his wife and girl moved there in 2004.

With the exception of my mother and two of my sisters who do care
all others in my family ignore me
I am essentially just…a bother to them
They still don’t get it that I was born into that family
that I exist
and that I need help.
because I was never able to pull myself up in life
like they could do.

I am.
I exist.
I can think.
I can make my own informed decisions.
I’m a fucking human being.

I have rights.
I have the right to make choices.
I have a right to know what is happening before ppl just
go and do things that are going to affect my very life without asking me first.

I have the right
As a disabled adult
To live and to thrive
As I am
In my own community
To have full accessibility
To have full freedom.
I am still disabled.
I am 60 years old now.
I’m STILL a full-on PERSON, though!
Today, I am the ONLY one in my family who does not have their own home.

They all have jobs and homes.
I just have one of the two cottages where I live.
That are owned by my mother and a trust
Well, I need a safety net too when my mom passes away,
And she cannot see that.
And neither can the rest of my family
who already totally ignore me and just think
of me as a BOTHER.
A fucking BOTHER.

I’m not in a good place today mentally.

Because I was told when my mom passes away, that these two cottages are going to be sold….And the proceeds from this sale will be used to be shared amongst my five living siblings.

Where does this leave me? With only my Social Security to have to learn to survive on
Because until yesterday
I was under the assumption I would inherit these two cottages as my safety net for my future.
I will end up either homeless
Or forced into a nursing home.
Which my mother keeps telling me that is where I belong
In a nursing home
where I won’t be free at all.

This is why I play the Powerball lottery, so I CAN be free.
It is for me the ONLY way out I see for myself

Winning the Powerball jackpot
Will Free me of the fear that those in my family
who think of me as a bother,
will sell the two cottages where I live
and I will be forced into a nursing home when my mom dies.
Free of the more grave poverty I will be in also when she dies.

This is why I am for universal healthcare.
This is why I am for the freedom to live
and work in our communities
that the Olmstead Law has given us disabled people
And I am also for a basic universal monthly income in the amount of $2,000 a month,
so that I can still live a decent life after my mom is gone.

But I have learned the painful, hard, heartbreaking way
That even my own mother can forget just what my life has been like
and be cruel and take the only safety net I have away from me
That we cannot count on our biological families to have our backs

They were the ones who told me time and again
As I was growing up,
as I was a developing human being
My family all told me
Over and over and OVER again
That I was never enough
That would never date
That I would never have boyfriends
Never have friends
Never have a car
Never kiss
Never have sex
Never have a job
Never drive
Never learn to think for myself
They told me time and again
I was Less-Than
Broken
Wrong
Too weird
Too ODD
Too crazy
That I would never succeed at life
And yeah….they called me the R word
Called me a dog
Said I didn’t have brains in my head
That no one would ever like me
That I’d be spending my life running running running
Till I’d run out of places to run to.

The above that I am describing
Is sadly, the treatment that so many,
far too many children who happen to be born Autistic
get from their families
My family is no exception.

Yes, the two angels in my life,
my two sweet caregivers
did talk to my mom yesterday afternoon
and get her to listen and understand
and she said she would talk to my brother and sister
and tell them my plight
and that she would go and change her will
to make sure I am taken care of when she passes away
that I will have life tenancy in my home till I die.

But I am still terrified
of what my brothers and sisters may still
do to me when my mom passes away.

I hope to God
That if my eldest brother
who is now in Heaven
Because he passed away in May of 2018
That he sees, from Above,
what my family may be trying to do to me today
And he watches over me and prays for me
like I know he does
And prays that God will soften their hearts to finally know,
Get,
And understand my plight.
Otherwise, I will be homeless when my mom passes away
Or else put into a home.
And that will be the end of me.