dTramAug 26, 2024
Ezme

I’ve been silent for awhile, the extreme isolation, struggling to keep myself afloat and my child alive has literally broke me. My child recently turned 9. I’d like to say there was a celebration. Yet, it was just us at home struggling to get through the day.

There is no support system for chronically ill, disabled parents caring for disabled children who have chronic, complex medical conditions. We are either forced to tough it out while living in eternal isolation, or fear death by allowing caregivers in our home who couldn’t give a shit that their Covid exposure risk could literally kill us.

The ongoing abuse I’ve witnessed my child experience from structural ableism and medical providers. The weight of it all is crushing us, and there’s no one to hold unto, there’s no support network. It’s obvious abled folx and society would rather we just rot isolated indefinitely, ostracized, alone.
#disabled #DisabledParenting #ableism #chronicpain #covid #n95 #pandemic #pandemicparenting #isolation #exclusion #gaslighting #medicalgaslighting #Care #collective #CovidIsntOver #WearAMask #savedisabledlives #eugenics #COVID19 #KeepMasksInHealtchare #respirators #chronicillness #spoonie #crip #disabilityindustrialcomplex

Aug 26, 2024 at 6:31pmWeb
Show threadEzmeAug 26, 2024
The reality is my child qualifies for over 600 hours of caregiver support through the Child Intensive inhome services program per month, and the organization pays $30 per hour, nearly twice what our family survives on. And yes we can find folx who will begrudgingly throw on an N95 mask. But I am not allowed to test folx, nor am I allowed to require them to have a Covid cautious lifestyle. Relaying solely on N95 masks to keep our Crip family safe is not only insufficient but dangerous.
The disability industrial complex has abandoned us. Thus life saving support, and hours go unused, saving ODDS (Oregon Department of Developmental and Disability Support) tens of thousands per month. The fact is their pro-eugenics behavior is paying off, and they are gaining funds, while disabled kids and families suffer permanently isolated in their homes.
Show threadEzmeAug 26, 2024
I can’t lie and fake it anymore, I’m sobbing as I write this. I just can’t comprehend how folx especially so called “leftists” are cool with this ongoing eugenics, supremacist exclusion of disabled folx. I’ve been fighting the medical industrial complex, sped educational industrial complex and pediatric industrial complex for 9 fucking years. I want my child to be a child, to be celebrated, to be protected, to be loved and honored. Yet that appears only for some. We just can’t keep going on like this.
Show threadEzmeAug 26, 2024

What scares the shit out of me the most is that I’ve been making parenting mistakes. I’m not talking about just being grumpy, or forgetting your child’s favorite toy or food. In my home mistakes equate to medical emergencies, potential 911 calls and stressful ambulance rides. A missed med, an accidental forgotten ingredient in blended feeds is catastrophic.

I have been searching for a Covid cautious, anti-ableist, neurodiverse affirming caregiver for my child for years. There is no one. If I’m being completely honest, I think it’s a purposeful way for the “state” to increase profit margins.
Sure if we had the time and money, we could move to “California” where parents are paid to be their child’s caregiver. However when getting out of bed is your daily success; and your family is living paycheck to paycheck the thought of a big move is a pure fantasy dream.

Show threadMordantivoreAug 27, 2024

@emilyfern I truly wish more parents cared for their kids as much as you do. The casual violence society normalizes against kids especially since the pandemic began has filled me with absolute grief.

You deserve all the support you need so your family can survive this hellscape

Show threadEzmeAug 27, 2024

@Mordantivore Thank you, it means a lot to hear support. I am really questioning myself lately. Am I myself integrating ableist exclusion? My child is so extremely isolated. Has zero friends, more due to hateful ableist fucks. My love knows no bounds for all disabled kids who have ID, are non-talking, and have chronic, complex medical conditions.

I want to start a remote support group for Covid cautious, abolitionist, crip families raising disabled kids who are considered to be medically fragile. I just don’t know any others.

You are absolutely correct though, I don’t know even 1 other family who is continuing to isolate and be Covid cautious to save their disabled child’s live. Maybe it’s due to myself also being chronically ill and disabled, and being an Autistic, disabled child that I give a shit.

For years parents of children with my child’s rare syndrome haven’t been masking. Instead they are traveling on planes, having their kids in school without requiring others to wear N95 masks, and having tons of unmasked caregivers, families in and out.

One parent is an icu nurse, and their child has a trach and is on a ventilator 24/7. She tried to inform me that they aren’t seeing any Covid cases anymore and that I shouldn’t be worried. They wanted to hangout, no thanks.

The sad reality is many of these kiddos are in and out of PICU’s and the hospital frequently, a few have passed. They never view a connection to Covid. I don’t want to judge as we’re all just trying to get by. However, I will definitely put my child’s survival over fun, frivolous travel/ social engagements, even though the isolation/ lack of support is drying up our spirits.

Show threadMordantivoreAug 28, 2024

@emilyfern You're doing all you can to protect your child & teach them about the eugenics driving their exclusion & isolation, which is orders of magnitude ahead of most parents.

There really should be a broader movement for anti-COVID families but it seems like so many are in their own little isolated lives, lacking the time & energy to seek out community if they even have the privilege of covid-safe(r) home schooling or seeking community.

It's been very clear how few parents are willing to take every effort to actually care for & love their children & as someone who relies on their abusive, fascistic parents to survive now as a disabled adult, it's gutting. I hope youth liberation really takes off because the nuclear family is evil & kids are being destroyed by cruel parents who would rather send emails than spend time with their kids.

Show threadEzmeAug 30, 2024
@Mordantivore I am so sorry you had to return to be with your abusive nuclear family. I was forced to live with mine through my mid twenties. It’s so heartbreaking to be forced to choose between being unhoused or living in abusive situations.
My heart really goes out to you. I hope you have some good comrades who provide some support. I finally cut myself off from my so called “family”. I just wish it was easier as you said to create Krip Kin family. I agree that liberation for disabled kids is sorely lacking. I feel like whenever I have spoken about it folx contradict it. It’s so challenging to find any community these days…. So true though, I have a huge amount of privilege being home with my little, and we are a yt, cis, housed family. I have been lucky as a neighbor has been picking up togo meals and running occasional errands for us. I hope you are receiving some mutual aid and care. Wouldn’t it be cool to start a Krip care collective?