busybee: fluffy rambles: I need some real-life friends https://beesbuzz.biz/blog/10199-I-need-some-real-life-friends #Dissociation #SocialLife #Depression #Isolation #Seattle #Blog #PNW

#Trans #Women in #Australia's #VillawoodImmigrantDetentionCenter Share #Experiences of #Abuse & #Discrimination.

#Deprived of #Healthcare and #Housed in #Isolation, #Transgender #women speak out.

#Women #Transgender #LGBTQ #LGBTQIA #Australia #Immigration #PoliticalAsylum #Healthcare #Harassment #Hate #Bigotry #Discrimination #Transphobia

https://lucyfromnaarm.com/p/trans-women-in-villawood-detention

“Everyone dies someday! Get out and live!”

I’ve lost count of how many people have said this to me. People who assume I’m “choosing” to stay home in bed or who think fear of Covid is the only determining factor to my not socializing more.

I can’t even begin to tell you how much it hurts - because is shows just how little people understand chronic illness.

To us - our baseline is EVERYTHING. We don’t risk it unless we absolutely have to.

Since I’m on the more severe end of the spectrum - my baseline is not great. I’m almost fully dependent on carers to survive. To cook, clean and even help me bathe. To get me to and from doctors appointments. To manage appointments for me. To get my meds and ensure I take the right ones.

So what can you do? You might ask…

I can write.

I can communicate with people digitally and find company and comfort (I can rarely speak these days).

I can still retreat into a vivid imagination and remember happier times.

I can usually still get myself to and from the bathroom

I can brush my own teeth

I can watch a sunset or a sunrise

I can listen to music

I can read books or articles I love.

It may not look like your life - and I’m sure it seems sad and small to many people - but it’s what I have. It’s my reality - and telling me to “get out and live!” Isn’t going to change that.

A setback for me would be catastrophic. It could easily take one or all of the above items off my list. When you’ve lost the lions share of your independence (at a young age no less)… you fiercely guard whatever you have left.

So please - before you yell “everybody dies!” Consider the fact that not everybody is having the same life as you. Some of us are suffering more than others - and we have wildly different baselines and versions of “normal.”

Lastly - if you think that Covid is a reason someone is fairly isolated - ask yourself why that might be. Maybe their baseline is like mine and they know a Covid infection would take everything from them? Maybe they have a high risk friend or loved one?

Then ask yourself what you’re doing to make the world safer for them. Are you masking? Are you staying home when sick? Are you avoiding high risk gatherings? Testing? If the answer is “No”… Its extra cruel for you to judge.

Next time you’re tempted to tell someone to just “get out there and live”… take a deep breath and try this instead:

“Is there anything I can do to support you today? Anything you need?”

Maybe you can keep them company while they lay in bed. Deliver a home cooked meal. Do a load of laundry and put clean sheets on their bed (oh how I adore people who do this for me).

There’s so many ways you can help us preserve our baseline and maximize our quality of life - and they all start with listening and being open to learning a different perspective.

Family evicted from temporary housing after visit from grandparents - Big Issue
https://www.bigissue.com/news/housing/temporary-accommodation-visitor-bans-children/

#Eviction
#TemporaryAccomodation
#Visitors
#Shelter
#Isolation
#ChildrenIsolated

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

If you've come to terms with being queer or lgbtq, then I'm sure you know that there are some things that can't be changed about oneself. Among those things are the ways and the places we grew up in.

For many of us, our childhood was a place of unwilling rural isolation. This past is not something anyone can leave really behind. Even while it shrinks in the rearview mirror or is shadowed buy the walls of a new home, that place will be with you for life.

It may have left deep scars and deprived you of opportunities, but you've also proven that you're as tough as the twisted trees, bare stone, or the rippling grasses of your hometown.

That strength is beautiful, and it's a greater gift than the pain you still carry.

I’ve been predominantly bedridden for the last few weeks. My long covid symptoms continue to worsen. The fact that many abled folx refuse to do the simplest steps to ensure disabled survival is a celebration of eugenics and abled supremacy. I have to care for and keep my disabled child alive. Yet, I can barely care for myself. Simple tasks like eating, brushing my teeth, and getting dressed have become a chore. Whenever I mention that I have LC to non-Covid cautious folx they always find it “ironic” since I’ve been home isolating, wearing N95 masks, and only going out when necessary since the beginning of the ongoing pandemic. It’s as if it’s a way for folx to affirm their “survival of the fittest” ableist values. As mask bans become celebrated who can we count on? At this point, we can’t even receive safe medically necessary care. I’m grateful for having home medical suction, oxygen and seizure rescue meds to save my child’s life, and avoid reinfection from another traumatic AMR/ER experience. This is disabled life, this is abandonment.
I’m searching for community and collective care. If others have resources or suggestions I’d love to hear. As a yt, cis, housed disabled family, I realize we have a huge amount of privilege to dismantle. #maskban #ableism #AbledSupremacy #disabled #LongCovid #stillCOVIDing #MaskUp #eugenics #MedicalIndustrialComplex #isolation #COVID19

I just left a remote Long Covid support group that was advocating for dropping Covid mitigations, and insinuating that folx were being "too sensitive" for being frightened about catching Covid again.
One participant stated that subsequent
Covid infections didn't worsen their symptoms, and that isolating forever was ridiculous. I went off about abled supremacy and eugenics, and that disabled folx such as my child who cannot mask require others to mask to save their lives. I will never support anyone who has long covid and refuses to be covid cautious. I have observed an extensive amount of ableist exclusion in Covid groups towards disabled children, especially those who have chronic, complex medical conditions. We mask for collective care, love and solidarity, we isolate to protect ourselves and our community. #ableism #abledsupremacy #longcovid #disabledparenting #stillcoviding #mask #LongCovid #isolation #disabled