I Can’t Do This Mundane Boring Lonely Impoverished Life Anymore~~I Need Hope, I Need Help! Please!

CW: Ableism and brief mention of the R word.

Something needs to happen for me, and soon….because I can’t handle my situation anymore…..I am seriously about to B R E A K from the stress and anxiety I experience—-every DAY.

I’m 63, multiply-disabled and autistic. I am now on dialysis, use a wheelchair, walker and cane, and have never been able to work my whole life.

Readers, please see my humanity. Please understand how hard it is to:

day in, day out, have to do without and struggle each and every month, just to make it through. Life is very boring, very mundane, and—-it is searingly, heart wrenchingly LONELY.

I am not lazy, nor have I ever been lazy. Being autistic, living my life systemically misunderstood and treated and judged harshly, has been debilitating for me, and it has worn me down….including my health….on all levels.

Growing up, I did

wash dishes–I washed lots and lots of dishes

I did also

clean the kitchen

clean the bathrooms

make my bed

dust

and

vacuum,

but it was never good enough for my family.

I made the effort to always try…but it was never ever good enough for them.

I was—both at home and school

bullied

punished

scolded

yelled at and yelled down

beaten

spanked

excluded

left out

picked last

talked over

gaslit

I was labeled as

weird

retarded–yes, the R word

a clown

circus act

ugly

dog

animal

told I was faking it

told I was a freeloader

told I was lazy, spoiled and selfish

and told

I would never have friends

Never be popular

Never learn how to drive

never get married

never have children

Never work at anything other than a minimum wage job.

My dreams and goals for my life were to get into acting, get into FM rock radio, and do something with my writing and artwork.

From the age of 10 on, I have longed to travel and see New York City, Washington DC, Eastern Pennsylvania, New England, Virginia, Michigan and the Pacific Northwest.

I have been to Las Vegas, Idaho, San Francisco, LA, Bloomington Indiana, and Milwaukee Wisconsin. But not ever have I been to any of the other places I long to see.

And I still thirst to see all of those places.

My family and others all shot all of my dreams down…and all of my dreams have remained so far out of reach for me to this day.

I have always had executive functioning issues, which has compounded the difficulty I have with functioning with daily tasks, like cooking, cleaning, hygiene, and—working at gainful employment.

I used to reach out for help in my community, and I spent hours, days and years attempting to seek supports and services so I could better my circumstances—-

I have reached out countless times—to County Mental Health, to Voc Rehab, to organization after organization—but being misunderstood at every turn there too, has meant nothing but shut doors and bitter disappointment—and me always left feeling like an utter failure as a human being.

Last year I again reached out to try to get supports and services….and my County ended up dropping the ball on me and ghosting me. One place they tried to get me hooked up with was a daily day program for seniors and disabled folks, and well….the social worker didn’t get my autism….so, I never heard from them again, and all of my phone calls to them started going unanswered.

I have fallen through the cracks time and time again because this world still does not get autistic people and our struggles.

So—I have subsisted for the past 42 years of my life on meager social safety net benefits. And have watched life literally pass me by.

I did drive from 1990 until 2012 when I had to stop due to my declining health.

I MISS the freedom that driving gave me.

When I stopped driving I had to start getting in home caregivers to take care of me.

After a long string of abusive caregivers, I now have two wonderful caregivers—but again, they are only able to do for me what is allowed by Medicaid. And Medicaid does not compensate them for the gas and wear and tear it takes on their vehicles which they have to use because Medicaid does not supply vehicles for them to use…..and so many cuts have already been made to Medicaid that they can’t afford to give caregivers this vital support.

And now with COVID and the rising prices on literally everything, even the interest rates going really high now on my credit cards—which I also need to be able to afford my vitamins, anti-fungal creams, my Netflix, Hulu, and my Apple and Pandora music streaming services which I need—yes, I do utilize those services to their fullest and it would leave a huge void and more hardship for me if I went without those services—and my utilities even going sky high now….it has become a painful hardship for me to make ends meet each and every month.

I am literally housebound when not at dialysis, yes, I am stuck at home with no place fun to ever go, so my mom pays for my cable TV and internet, a landline phone and cell phone service so I am not entirely without entertainment and connections to my disability community friends and the disability rights activism work I do online.

I am beyond lonely and beyond depressed all the time. I wake up feeling dread and like everything is so futile. I fear I will never achieve any of the dreams and goals I have had for my life. I feel such utter hopelessness, and I dread the prospect of how much harder life will be for me when my now 94 year old mother passes away.

I live confined to a tiny 550-square foot wooden and stucco cottage which is owned by my mother, and when she passes away, the family will sell these 2 cottages and I will have nowhere to live then. Because I won’t be able to move to a place where I won’t get instantly kicked out for having a sensory overload meltdown.

None of my other siblings and relatives are able or even willing to help me, so when my mom passes away, I will be left without my cable, internet and phone service, and the music and movies I so enjoy— I will not even be able to afford paying my water bill, which my mom also pays.

I need real hope for once in life for however long I have left on this earth.

I need for people to have a heart for what life is often like for those of us who are disabled when we cannot work and are forced to live—24 / 7 — within the tight parameters of the social safety net we rely upon just to exist—and yes, autism is also a disability—it is a very lonely, isolating and very Othering, desperate daily experience.

I am 63. I now have end stage kidney disease, and do dialysis 3 x a week, 4 hours a day. I feel as if I’ve literally been robbed of a decent life, and as if life has passed me by.

I need help to be able to make ends meet each month without having to do without, I need to be able to secure adequate and sensory safe housing, and be able to be free to at least fulfill some of my lifelong dreams and goals I have had for my life.

My only other recourse is to stop my dialysis treatments and let Hospice come in, because I know I will not be able to handle being even more impoverished when my mother passes away.

It should NOT have to be like this for us disabled folks.

We matter and our lives, and quality of life M A T T E R S.

Someone please help me.

My mailing address is:

Melissa Fields

P. O. Box 6416

Santa Maria CA 93456-6416

One Disabled Person’s Story Of Having To Live Within Systems Of Oppression

Below is a post I wrote on my Facebook wall this morning. Because I need you to understand what life is like for disabled folks who have to–on a daily basis—navigate systems of oppression and access barriers that hold us back unnecessarily, from being able to have equal participation in our communities and every day activities.
—

Growing up in a supportive, accepting, open-minded, and inclusive family as an autistic / ADHD person makes all the difference in that autistic child’s entire life.

Trust me. I KNOW, firsthand.

It truly matters. Please. Trust and believe me.

I T M A T T E R S.

I’ve been robbed of being able to enjoy a fulfilling life. Because growing up, I was, at every turn: corrected, held back, punished, spanked, beaten, squelched, left out, ignored, and told—-over and over again—every day—that I would never be able to do this or do that in life, nor would I ever have friends and partners because of my “behavior” and all of my numerous too weird for my family routines and quirks.

I was my family’s embarrassment. And my family’s scapegoat. Everything that went wrong in their lives was automatically—my fault.

And no. I’m not happy about it.

At all.

I live a life of anguish and so many unmet dreams and goals.

I GRIEVE—and I grieve HARD for the life I have lost, at the age of 63 years old.

All the rock concerts I have missed. All the proms. All the Friday and Saturday night cruise nights on Broadway, our town’s main cruise.

I missed out on being able to handle college because of all the painful trauma I suffered with mean girls and bullies all through school. And insurmountable learning disabilities that were never fully addressed.

I have never been able to work at gainful employment my entire adult life. So I have subsisted all these years since high school—on very meager social safety net benefits, that are still woefully inadequate to live on.

Parents—if you have an autistic child—don’t treat them as if they are an embarrassment. Don’t squelch them and exclude them and punish them for who they are. Don’t presume they will never in life.

You will have a child who grows up hating themselves so much that they will flounder and fail, and fall through the cracks, like I have.

They will be afraid to speak up for themselves and set boundaries for themselves. They—will be people-pleasers—like I still am to this day.

Negative people experiences— will break them. Like they break ME.

I often will myself to die in my sleep…the pain of living a life of loneliness and always not enough money to truly live on via the Social Security I have been subsisting on since 1981, is really and truly taking its toll on me today.

I can barely afford to pay my monthly bills today. I can barely afford my groceries and toilet paper. My electric and natural gas bills are now too high for me to afford anymore.

I live each day stuck cooped up in my home, when not at dialysis. Just…home….where I am, all the time, with only my TV and computer, away from people and things I want and need for my happy. Like the ocean. Like LGBTQ+ Pride Month and all of the activities I am missing out on because I am stuck at home with no way to go to any Pride events.

Even though it pains me to have negative interactions with people, I still crave being around warm and accepting people. They are out there, I know, because I HAVE met them. And I thrive when around these kind of people.

Being stuck in my house all the time means

I miss all the beautiful rainbows and double rainbows

I miss seeing the huge orange moon rise at night

I miss seeing the green hills after a rain

I miss concerts and all other events I’d like to attend and participate in.

I feel as though I’m living my life in a damn monastary.

I follow a blogger called Diary of a Mom on Facebook. She has two daughters, Katie, and Brooke. Brooke, 20 years old, is autistic, and this family stopped listening to the so-called “experts” who wanted Brooke in ABA therapy behaviorism boot camp. They saw the pain and anguish that this was causing Brooke. And they took her out of those abusive programs and started accepting, embracing and CELEBRATING her—as she WAS and IS.

I didn’t get actual ABA growing up though—I got ABA-style tough love from my own family.

Brooke, on the other hand, is fully embraced by her family. Her parents have made sure that the services and supports Brooke gets, are fully-supportive and affirming, of Brooke, as Brooke’s full-on authentic fun unique self.

Her sister Katie adores her.

Brooke is not an embarrassment to her family.

I wish to God my family would finally realize how much and how utterly DEEPLY they have hurt me by shunning me, by treating me always as Less Than and Othering me all along.

I still am ignored by my siblings, and am still thought of as that family embarrassment.

Three of my siblings have told my mom to sell these cottages where I live and have me thrown into a home.

The Complex PTSD and anxiety I suffer is today, causing me to break out in hives all the time, and now I even had the “pleasure” of experiencing explosive head syndrome one night when I was so stressed out as I was trying to fall asleep, that I heard a loud cracking sound—right inside of my head—and it woke me straight UP—frightened that I may of gotten shot.

I wish this world would be kind and give people like me open doors instead of all of the rules and belt tightening I have to do every DAY now.

Life for those of us who are autistic and multiply-disabled does not have to be this hopeless, this lonely, this futile, and this painful.

I am writing this to every doctor, nurse, social worker, psychologist, psychiatrist, school teacher, school principal, and school counselor out there—as well as to family members, friends, and caregivers of autistic people.

I’m writing this to our government.

See our humanity as disabled folks. We are NOT Less Than. We should not have to live life sentences of poverty and unmet dreams and goals, needs and wants just because we’re disabled and cannot work at gainful employment.

I am here to ask you to tear down every access barrier that makes it hard to enjoy our lives and thrive in life. This includes letting us have monthly benefits that are not below poverty level. This includes making it easier for us to secure those benefits. This also includes not making it a literally traumatic experience every time we have to have a Social Security re-evaluation.

This means not just ramps at every entrance of every building. Or large bathroom stalls and wider doorways…but actually sensory friendly spaces too. Softer lighting. The taking away of rules that are too strict and too restrictive. You all being flexible with us and patient with us. And listening to us when we tell you we are uncomfortable.

Tear down these walls.