Note: I originally wrote this note/blog on June 23, 2014. I am reposting this tonight, because i had deleted this when i had deleted all of my Facebook blogs, and i want this blog to get read by as many people as possible. Thank you.
Dear Family, Dear City, Dear United States Of America,
My name is Melissa Fields. I am a middle aged Autistic adult. Guess what? There are hundreds of thousands of us who are Autistic adults who are screaming out to have you all finally hear our voices, listen, and recognize us. Yes, we are talking……we are talking in multitudes……we are talking and telling our stories all over the internet!!
Stop listening to Autism Speaks,
and instead hear my story and the stories my friends are telling, because that is where you are going to get to know about Autism.
To my family, do you all realize that when Mom passes away, i will then be fending for myself even more than i have to now? Because all of the rest of you, with the exception of two of my sisters, all shun and ignore me and cut me out of the whole Fields Family Equation like i don’t exist. I do not feel i can pick up the phone and call any of you, and some of you even have me blocked on Facebook even. Yes, my eldest brother does pray for me, and he even has whole Catholic Masses said for me, but he never ever calls me. Never. And guess what? I am not doing so well anymore. My physical health has gone so far downhill that i now need daily care, in order to be able to remain in my own home like i desire to continue to do. I have tons of unfulfilled dreams that i have clear from childhood that i have yet to fulfill….dear family, remember how i used to spend hours every afternoon drawing pictures, elaborate pictures of faces, houses, trees, flowers, bushes, and roads? I even memorized what some of the TV movie intros used to look like, from the 4:30 Movie, to the ABC Friday Night Movie, and i would draw them too. I even drew the US 101 sign. Yes, i used to draw and doodle…..alot. I used to love to sit and sneak the radio and listen to Top 40 radio, which you all forbid me to do, because it wasn’t your country western music. I had a love for art, a love for rock music, and i wanted to do so much with my unique creative mind, but you all would ridicule and squelch me…..even so, my will to succeed in life, some how, some way, has kept me going all along. I continued to draw, doodle and write, and i continued to dream of being a nationwide FM rock radio deejay one day who would go from coast to coast, radio market to radio market. I was determined that i would be the next Jim Ladd, or even Mark Goodman, like on MTV!! I have always dreamed of my adult life being in Hollywood and Manhattan both. Yup, bi-coastal!!
My story is many an Autistic adult’s stories who lack family support and local community support….today, i am in agony on all levels, especially because of what i’ve been through for the past 22 years of my adult life that i have had to live on Mean Bully Monster Street. Before i had to move here from a neighborhood where i was doing well, for economic reasons, and my dad’s failing health, i was doing well. I had finally learned how to live on my own, cook for myself, do my own housework, and i even learned how to drive and got my drivers license and my late Grandma’s car in May of 1990. Back then, i was trying. I remember, family, how you all chipped into buy me a new electric typewriter the Christmas of 1990. And i did appreciate that. But i tried to use it, and i just could not master it. I failed typing in high school because of the manual dexterity it took to use a manual and electric typewriter, and i could never learn how to do the margins and set tabs correctly, or do the speed typing tests. I knew that i would learn much better on a computer though, as the computer has always done those things for us, a computer keyboard is more easy to use, and i can type quite well and quite fast with just my two index fingers on the computer!!
What can i say? In these past two years, alone, i have had to endure the loss of one friend who i really had thought was in my corner, and then several very abusive caregivers….all at the same time. I now finally have a caregiver who gets me, who is nice, who cares, and who does not take my money, like the others did. And she does not neglect me either. But physically speaking, my legs and feet now are so swollen with chronic lymphedema, plus a leg tumor on my left inner thigh that is now the size of two basketballs. I have stopped driving. I sold my car. I have even stopped drawing. I still write though. Because i am determined to tell my story.
In March 2012 when my then friend of six years, R, not his real name turned against me and began to “pen” me a series of mean, sarcastic, hateful emails, i shut down. His abuse flipped a new switch inside of me that switched me right back to not having the ability to drive a car again, and it made me literally afraid to go places, anywhere anymore, by myself. Then when i went through the caregiver abuse, that just further eroded my well being and ability to do many things on my own anymore. Today, i am a wreck….with deep-seated PTSD issues, and deep-seated abandonment issues,….due to my childhood, my teen years, and these past 22 years of living here at Mean Bully Monster Street. I now have lots and lots of nightmares about R, about some of my abusive caregivers, and other past neighbors.
I do not tell this story to get pity, or to wallow in self pity. I tell this story for several reasons:
I need to tell this story because **I** need more help. I need for my family to understand me, to stop ignoring me and start being here for me.
I need to tell this story for the sake of my Autistic community friends, because all of our stories NEED to get out there, so all the world’s governments will get it that we are living, breathing, walking human beings who do happen to need real time help…..not the kind of help Autism Speaks talks about but REAL help and services that are going to help us with the real time issues we face.
We do not need or want to be fixed or cured. There IS no cure for Autism….neither do we wish to be seen as burdens, wrong, bad, inept, (and excuse the term: retarded), and i apologize for saying that word, but people do call us that word, or less than. We are not a curse. We are not a tsunami. We are not an epidemic. We are not to be eradicated or euthanized or murdered. We need to be recognized, and to have real time services and supports that will help us to be able to live the meaningful lives that we were meant to live. Forced ABA therapy ain’t gonna do it. Neither is punishing, yelling, or screaming our Autism away. Or praying our Autism away.
What’s gonna do it is:
Love and lots and lots and lots of it.
Acceptance….true genuine acceptance.
Patience and lots and lots and lots of it.
Understanding that meltdowns are not temper tantrums, that they are a result of not being heard and respected, the result of abrupt changes, and the result of things that are triggers, and sensory overload.
The willingness to listen and learn the way we each are, what our rituals and routines are, what ou favorite foods, music, TV shows and movies are, the ways we like things done, etc., and to try your best to not change these familiar things for us. To learn what our triggers are and to work hard to keep us safe from them.
Inclusion. Being fully included in our communities. Schools. Colleges. Churches. Synagogues. Restaurants. Movie theaters. Sports events. Concerts. Etc.
Talk TO us, not over us.
Listen without interrupting.
Don’t dismiss and silence us.
Stop making cuts to our programs and our safety net.
Restore the cuts that have been already made.
Let us have full opportunity and access to quality healthcare, vision care, dental care, mental health care, and Autistic services.
And know that it is nothing about us, without us.