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 1987

when 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.