Monthly Archives: May 2014

Disability And Faith: Toward Ending Shame, Blame, and Human Judgment of Disability

Disability and Faith

Throughout my life, I have worn many labels.  Tomboy, daughter, writer, activist, transgendered, GLBT, disabled, mystic, niece, granddaughter, movie buff, spitfire, blogger, singer, medium (yes, I am a medium), New Yorker, cat lover, and a bunch of others.  I have at times attempted to drop some of these labels at any given point, but they all stick on some level.  There are some ways in which labels might hurt you, like when they are applied to you by other people and they don’t fit.  But accepting your identifiers is also a lifelong process where you may fit one category better than others at times, but always, someone somewhere remembers you as the things you were before.

Some labels are dangerous to try to forget about, like the pieces of you that make you you.  I’ve been making up stories in my head since I could think, and I started writing…

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The Dangers Of Ableism, Assuming, and Judging Others When Not In Their Shoes

Trigger warning: Ableism, strong language, person-shaming, the dismissing of one’s dreams, personhood, and character, a lay person attempting to make a diagnosis over the internet, unwillingness to get to know a person before judging them.

As many of you know me, i am an Autistic adult who is here on Facebook, YouTube, Google Plus, Twitter, WordPress, and Blogger, to tell my life story, for several reasons. One reason is that most of my family are not physically living near me now; they all moved out of state during the ’90’s and early 2000’s, with the exception of one brother who still lives here…..back when i was doing better than i am now…..back when my physical health was still good.

But i am not close to most of my family, nor have i ever been close to most of them. Most of my family shun and ignore me.

I am very lonely, and i badly need local friends who will get and accept me.

I am looking for understanding, comnpassion, empathy, kindred souls.

I am looking for Autistic-friendly help and services so that i can move and try to get on with my life as my life has been stalled at Mean Bully Monster Street for the past 23 years, trapped, unable to escape.

I am looking to belong….and to feel safe in this world.

I am seeking to speak out and to be heard.

And to educate everyone via my story….both the good, and the negative parts that really really suck.

No. I did not dsay that my Autism sucks.

My Autism does NOT suck. I repeat: My Autism Does Not Suck!! 

And i am PROUD to be Autistic!!

What sucks is when i am told i am a fraud, and a scam,

or that i am not Autistic enough, or that i am too high functioning to be Autistic.

****Fuck functioning labels!!!!****

It really really sucks when i am told that i am not even Autistic, that i have “other” issues instead, like it’s a bad thing, like i am a bad person.

And it sucks when people imply i can work and “do better” than i am doing….as if they are implying that i am lazy and want everything handed to me.

That REALLY sucks to be called lazy when i KNOW that i am not lazy.

And it really REALLY sucks when people misunderstand and say that i am wallowing in self-pity!!

I don’t understand why people assume these kinds of things about those who are Autistic. It is like they assume Autism isn’t a real neurological disorder and disability…..it’s like the memes that read “But you don’t LOOK disabled….” –OR–“You can do better, if you just tried harder.” They assume that Autism is a behavioral problem and that we all need to be scolded, fixed, cured, yelled at, chastised, and corrected.

Read my blogs. Watch my videos. talk to me. Get to know me!! 

Within the past two days a lady who has never met me made shitloads of very cruel remarks to me and about me on a comment thread where a friend had posted my GoFundMe page to be nice and help me to get more donations…..yes, i have a GoFundMe page, because i am seeking the funds to move from here to a better place where i won’t be bullied anymore, where i can get Autistic friendly help and services, and the good healthcare i haven’t been able to get here. I started this GFM page when i was still struggling with caregivers who were very abusive and who were extorting money, food, candy, and snacks from me, when i thought i had a way to move to the state of Michigan. I was going to use the funds for that move. But i now have a wonderful caregiver who does get me, and who is VERY sweet, patient, and who is always happy and laughing, and we have fun when she is here. My GFM page is still up though, because i still do need to move from the neighborhood i am living in because it is very noisy, and most of my street is zoned “light industrial”. These houses were all here before the industries came in 1976. Before ’76, my street dead-ended right outside of what is now my house. Some of the employees and their friends, in some of the nearby businesses began bullying me 10 months after i moved here, and my mental and physical health has taken a real beating ever since. How i have survived as i have all this time, is only due to God, my mom, my two nice sisters, and the few friends i have managed to meet along the way. And then came the internet and Facebook, and now i have an awesome online circle of friends who do get me.

I feel safe here on Facebook. Very safe.

But the bullying, ongoing abuse from past caregivers, and the emotionally violent break-up of a six year long friendship that was also an awful up and down rollercoaster ride…..has taken a real toll on me. Physically and mentally. Just because i can still type, still laugh, still talk, and still function on some levels, does not mean i am okay to go out and get a job today. Nor does it mean i can snap out of this and pull myself up by my own bootstraps.

Below is a list of the things this lady said to me…..

First, she said that i am probably another scam. No, i am not. I really do need help, because i don’t have the funds to move on my own. I am trying to save up for my move….but i also need things along the way, like new underwear, etc., that keeps coming out of that move money. I only get so much per month from Social Security Survivor’s benefits—and i have to live on that. I am also an adult. Who cannot handle being around alot of people for too long, and i cannot handle things like talking on the phone, which also involves talking to people, nor can i handle much of anything else that puts me in the line of fire of the types of things that csn trigger sensory overload for me, and then meltdowns., and then there’s the street noise. The loud deliberate hot rodding that the bullies do that is a constant here, is a major disruption for me, so i am up at night, because i use that time to decompress from the noisy days.

My specific answer to her was this: “I am Melissa. I can assure you i am not a scam artist. If you get to know me, and you can do so by clicking on my profile and reading my FB blogs, as most of them are set to public view, you will see my story. I have nothing to hide. I even sold my car and don’t drive anymore because of my health, and because i could not afford the upkeep and insurance on the car anymore. I am in hell. Because now i am housebound too, except for when i get out to go to doctor’s appointments and to my bank with my caregiver. I never get to go to the ocean to see and hear the waves anymore. I really love the ocean, so this bothers me greatly to not be able to get to the nearby coast. Please get to know me before you call me a scam.” I went onto tell her: “I would even be willing to stay living in this house if it could be renovated, and if the bully situation did not exist.”

I invited her to read my blogs, and watch my videos!!

To which she wrote back: “Well, you certainly have a huge wishlist, wanting to take all these trips to New York, Michigan, New England, Washington DC……out of curiosity, have you ever been diagnosed with anything other than autism? Also, you obviously have access to a computer, and i’m assuming a telephone. Have you ever considered taking a job as a telemarketer? You could work at home and make your own money, which is something i am sure you would love to do. You don’t even have to meet the people you talk to! it would help you to take control of your own life and take these trips instead of asking other people for money.”

My reply: “T—–, first of all, are you Autistic? I am too keyed up by the environment i live in to be able to work at any job. Telemarketing involves talking to people who would, most of them, be rude and hang up on me. I don’t have the ability to be able to handle that kind of thing. It is NOT that i don;’t want to work. Just because i can type and am articulate, does not mean i still don’t have disabilities. They are just hidden. You sound antagonistic, and i don’t appreciate, nor can i handle that. I feel as if i am being placed on trial by you. And you do not even know me yet!!”

And i went onto say: “And i am not supposed to have dreams? Come on, i’m a human being, for Pete’s sake!! I have a right to my dreams!! :/

I blocked her. I had to. Because i was feeling attacked and judged.

Her last reply before i blocked her was this: “I’m sorry you’re getting defensive over me saying that there are employment opportunities out there for you. As for whether or not i am autistic, i am actually in the diagnosis process myself, and there is strong evidence to support a diagnosis of Asperger’s Syndrome.” She went onto say her son was diagnosed with PDD-NOS, that her father may have a form of ASD….and….”..you’re not being placed on trial, but there comes a point in everyone’s life, autistic or neurotypical, when you have to be able to pull yourself out of whatever quagmire you’ve sunk into. If you want all these things, then you have to be able to figure out how to make them happen. Compassion, understanding, generosity….these things you ask for….are all wonderful human traits, and asking for help is not shameful, but refusing to take responsibility for your own life is.” She went onto say, and this is the rest of her reply to me: “Do you have the will, and the intent, to make your life better on your own, or are you always going to need another donation, another helping hand, another benefactor? I don’t say these things to be rude to you, nor to hurt you, but rather, as an autistic woman myself, i want you to succeed. I want to see a video on YouTube a year from now where you celebrate your joys and your victories, rather than bemoan your sorrows and wallow in self-pity. Rise up! Rise up and be free! And do it for yourself, under your own power. I wish you the best of luck.”

First of all, she implied that i somehow made this quagmire i am in myself. No, my dad’s health was declining, so i had to move here….and i have not had the means to move from here, so have been living here for the past 23 years. It’s either that, or be homeless. Then she goes onto imply that i am always going to need help. Well, ya know what? Autism is lifelong. I will always need help. What’s so effing bad about that? Again, this lady doesn’t know how i got to this point in life, all she can see is how to fix me so i will shut up and go away.

After i blocked her, i posted to another lady on the same thread: “I understand many people have been scammed, so i get this. But like you say, T—– doesn’t know me, so for her to assume right off the bat that i am a scam too, is very unfair, and it is very triggering for me. Due to that, i have blocked her. I have nothing to hide. You are free to go watch all of my YouTube vlogs, and read all of my blogs that i have written, —-, but i have a strong feeling you already have.” 

My other remarks were:

“And as i said before, i know there have been scammers, and this is why i thought long and hard before i actually went ahead to set up a Go Fund Me page….because i knew some people would misunderstand and think i was trying to scam too. But as God Himself is my witness, i am not scamming. My plight is real.”

And then she went onto post more. But since i have her blocked, i could not see it, but others could, and they have read to me what she said.

She says that she is still suspicious of me.

She says that she feels i don’t have a form of higher-functioning autism at all, but that it is something else, and that that’s the reason why i act as i do.

She said that she has seen my videos, that my plight with the bullies seems to be real but that she sees a form of paranoia in me.

She called me way too defensive.

She said i am not autistic, because autistics tend to suppress their symptoms, and i don’t suppress mine.

She said she has the tools to help people like me…..but that i’m a person who would rather have everything done for me, and then i complain when i don’t have all the luxuries in life that i want.

It sounds as if nothing i say and do will convince people like her any other way. She has already diagnosed me, and been my judge and jury. I would have been more than happy to engage with her, answer all of her questions, etc., but i felt as though i was being put on trial…..i felt like i was being picked on and attacked. If she had been friendly, and open with me, it would have been so much different, and she would have gained a new friend, but she chose to be adversarial instead.

I hope more and more will be written about this. 



To All Of My New Friends, (Re-Edited)

To All Of My New Friends,

Welcome!!

This is a note to explain about me and my situation. I am almost 54 years old, and i am Autistic. I have suffered my whole life, not from my Autism, but from growing up being misunderstood, misjudged, and rejected, because most people have not taken the time to understand and get to know me. My aim in life is to tell my story, by venting and blogging and vlogging, so that i can finally get the help i have needed for so long, and to educate everyone globally as to how life is for those of us who are Autistic and who grew up without support, acceptance, and love.

I am not a drama queen, nor do i like drama; however, i do happen to vent alot, yes, i vent a great deal, only because it is the only way i know how to cope with what happens to me. I need to vent, so i can get it out, so i can process through things that happen to me, and to educate all of you who i come into contact with, so you will know and understand. So you will all **get** this. My hope in telling my story, is to make this world Autistic-friendly.

I have unfortunately been the victim of much bullying, sadly, by most of my family, mean schoolkids, etc.,…..and i still am being bullied to this day by mean men in several nearby businesses where i have been living for the past 23 years. Yes, this bullying has gone on for the past 22 years of the past 23 years i have lived in this particular house. On top of this, i have had to deal with many of my close friendships that i have had, ending very badly, with the people turning angrily against me. This has given me a great complex and fear that it will keep on happening, over and over again, to where i will just not be able to take it anymore, and my heart will just stop beating from the sheer exhaustion. 

I promise you, this is NOT a pity party. I am trying to get my story to go viral because of the above reasons. I am desperately unhappy. Please put yourself in my shoes. If you lived trapped where you are being bullied, on top of never being able to cut a real break in life because nobody believed in you? Sadly this is, and has been, my lifetime reality. I only keep on living because i refuse to commit suicide and risk being sent to hell if i do that. So i suffer and suffer….these are please for help, and to be heard….these are not pity parties or me being a drama queen.

To continue my story……

I have run all of my past personal caregivers off too. Because most of them either didn’t understand and/or, they could not deal with me. Because i do have rather loud dramatic meltdowns when i am upset and on sensory overload.

I have also had many of those caregivers be very very abusive towards me.

It has always been hard for me to keep friends. And my caregivers.

Reason is because i am a very complex person; i still have lots, lots, and lots of fears, rituals, routines, hangups, phobias, and fetishes, that most people don;’t understand, nor even want to. And as i stated above, i have alot of meltdowns. 

I have deep ongoing PTSD issues. I have a deep-seated fear of being abandoned over and over again. My PTSD is getting worse, not better.

I have noise sensitivities to certain types of noises, mainly the loud noises the bullies in my neighborhood make deliberately to antagonize me, with their motor vehicles, and their LOUD booming bass.

I cannot wear headphones or earplugs, as things in or on my ears bugs the living daylights out of me too. Nor do i feel i should have to wear earplugs in my own home just to be able to live my daily life.

I do have a sense of humor, i am fun, goofy, and easy to get along with, if you are genuinely accepting of me.

I am also very compassionate, caring, and i do not lack empathy for others at all. I am however, in my own world much of the time, and it is hard for me to show or reciprocate affection and appreciation towards others.

I love people, children, babies, and animals, but i am not good at being close with anyone, either human or creature. I cannot handle holding babies, or cuddling with a cat or dog, due to sensory issues with that kind of interaction. I love hugs though, but i have to be hugged a certain way, or that can even throw me off.

My brain and body are simply wired differently.

Please get to know me, and feel free to ask me questions before you judge me and give up on being my friend, please. Please also let me talk. Please don’t talk over me, or at me or talk down to me. Or talk to me like i’m a baby. Above all, please don’t take things i say or do personally, and get angry at me and shut the doror on me, because that kind of anger when people get angry at me, is unbearable for me to take. If you do get angry, and need to distance yourself, please at least reassure me it is only temporary, that though angry, you are still my friend. I can take it better then, and won’t freak out so badly.

I get easily discouraged when people get mean and harsh with me and give up on me. This makes me not want to even try anymore.

Please know that this is my wall, and my safe space here on Facebook. I seek to make friends with people who are going to truly “get” and accept me. People who i know will be there for me as my forever friends. I need forever friends in my life. I freely admit that.

I am a bleeding heart liberal person who has faith, and i do cuss, and i am quite outspoken, so please don’t let that throw you. I am not a mean person though. I am not here to hurt anyone, or to fight, just to tell my Autistic story, so i can do my part to help end the hate and stigma that is still out there. And again, so i can get the help i so desperately need so i can move on with my life in a more peaceful setting than where i am living now.

I wrote this because i have had alot of problems even here on the internet being understood.

Thank you all for listening.

 

My Big Wishlist

My big wishlist……

would be to have a secure circle of local friends
who are Autistic and who get me and who won’t ever flake out on me.
would be to have the money to be able to buy my own nice two bedroom home up in Arroyo Grande and to be able to have the money to pay the taxes, insurance and upkeep for life on my little home. This home would have a nice backyard.
would be to have my legs healed so that i can walk, drive again, and do lots of other things for myself again.
would be to be able to have the money for my new car, and to be able to pay for its upkeep, and insurance for life.
would be to be able to have my trips to Northern Michigan, New York, Washington DC, and New England.
would be to be able to see the Northern Lights and the Midnight Sun.
would be for me to be able to publish my life story.
would be to have people stop giving up on me and throwing me away.
would be that my family’s hearts would all soften towards me and that they’d all stop ignoring me and being angry at me for who i am, and for telling my story.
would be for my mom to be able to have the money to fix these two little cottages up so she can get good rental income off each unit. These two units where i now live need alot of repairs that she just cannot afford at all at this time.
would be for this whole world to start understanding and accepting us Autistics….to stop trying to change us, cure us, and “fix” us.
would be for there to be a REAL safety net for ALL who are disabled that is compassionate, just, and fair. A safety net that cannot and will not ever be cut.
yes, this is my big wishlist.

My Midnight Sun Fantasy

Dancing in the sweet gentle wind
as rainbows dance all around me
it is midnight, but the sun is still shining
as i dance by the Northern Seashore
in the sun’s golden light
no more do i worry
that mean men will bully me
as my electronic chill music plays
as the days get longer and longer
as we reach another Summer Solstice
in an hour i will be in my bedroom 
with my blackout curtains pulled tight
to sleep another eight hours
and then i will awaken to another evening and nighttime
with the sun as my golden companion
i celebrate the spring and summer in this place 
although it is a place i fantasize about
many a day i fantasize about this place
i feel i am there right now
in my own safe bubble
where no one who i don’t want to come in
can penetrate this safe cocoon
i long for this place everyday of my life
to flee once and for all 
from these mean men who bully and torment
the living daylights out of me
just because i am Autistic and i
have complained about their loud hot rodding
and mean rowdy behavior
but at least every night i can go to my fantasy place
that i call my Midnight Sun Fantasy 
and in the winter?

this place has nightly shows of
spectacular Northern Lights 
that shimmer and shine like ribbons of
bright green, purple, red, hot pink, and blue and yellow.
Yes, someday this place will be real to me
but for now it exists in my mind
and i can go there at night when the bullies are all gone.

An Open Letter To My Family, My Friends, and My Community

Yes, this letter is to my family, friends, and my community.

I am not a monster

and i nam not crazy

I am Autistic

Which means my mind thinks differently than yours.

I process things differently than you do.

I hear noises more than you do.

My sense of smell

Taste

Touch

Vision

and hearing

is much more heightened than yours is.

I have a uniquely creative mind too

I have a unique sense of humor

I also feel empathy and compassion for others, and i care

and i care alot more than you know

Again, though,

I am Autistic. 

I was born this way.

I will die this way.

Because my Autism is lifelong.

It cannot be cured and fixed 

and made to go away.

I cannot take my Autism off like it is a jacket.

So when you ignore me, shun me, and reject me

when you block me on social media and

won’t even let me have your

email addresses and phone numbers

when you treat me as if i am

bad and wrong

because i am different

when you shut me up and won’t let me speak

when you call me mean names

when you look at me funny

when you taunt me and tease and chide me

and don’t include me in your conversations

and activities

when you invalidate the words i speak, and my feelings

and dismiss them and me

when you tone police me, talk down to me, and patronize me

when you treat me as if i am a criminal and a leper

it hurts and makes me feel as if i am an alien in my own skin

you may not see my heart breaking or my tears

but they are there, and these tears run like raging rivers

because i feel so alone and alienated and cut OFF

this lonliness aches with every breath, 

every step i take

i am alone every Thanksgiving and Christmas now

i so dread the holidays now because of that!!

I never even get to take trips up to Idaho

to see my mom and family

I no longer trust my city’s police either

and am

deathly afraid of them now

because of how awful they have made me feel

and some of them still mistreat me

shut me down and won’t let me explain

that yes, i AM being bullied by

the employees and their friends

of several nearby businesses

that this is happening almost 24/7 now

it is my fervent dream to be able to move

from this torture chamber i am living in

and to have finances set up 

so that i can make it my whole life

it is my fervent dream that all in the disability community 

will have a decent life set-up and safety net

that no more cuts will ever be made to our safety net

that our families will also step up to help us

so that we are properly taken care of our whole lives

i hope that my family will read this and know

how lonely i am

that this is not me “behaving badly” 

and

“lying”

and

“causing drama”

or me

“being a diva”

and 

“twisting things”

or

“blowing things out of proportion”

or

“using my Autism as an excuse”

Nor am i

“hiding behind the shadow of my Autism”

Please take the time to open your minds and hearts to me

before it’s too late

I am not a curse, and neither is my name a curse

help me so that i can

have all the things on my bucket list that i 

have so longed to be able to do my whole life.

My artwork, life story being published, travel

to see Northern Michigan, New York State,

New York City,New England, Eastern Canada,

Great Britain, Northern Europe and Scandanavia

and to be able to see the Northern Lights and the Midnight Sun too

Help me so that i don’t have to feel so afraid and alone anymore.

help me so that i can have legs again, and a car again,

so i can go to the ocean whenever i want,

and i can have

the peace and independence i once had, back again.

I am a human being

and this human being is hurting beyond what she can bear

because she is unable to work for these things herself

this human being has had enough.

Please help me, in Jesus name, 

Will someone out there

Please help me.

My Sunday Home Alone Again

I have missed seeing the wildflowers. Pretty soon the hills will turn summer yellow, and i will miss seeing the nice green ones. I long to sit by the ocean to hear and see the waves. I am craving going to a good rocking church service where the music is contemporary and i can feel the Holy Spirit in the songs. I am so sick of being cooped up in this house unable to go anywhere. It is taking a real toll on me.