chronicallycouchbound - Tumblr blog

[chronicallycouchbound]

Anyone who thinks my high support needs is violence is getting blocked. There's been several people who've used these tags and similar (with no further explanations).

I shouldn't need to iterate that my caretakers are compensated very well for their time and work and are my (chosen) family who have done these tasks for me previously unpaid.

My loved ones voluntarily choose to do this labor, they have expressed many times that they would do this paid or unpaid because they love me and care for my well-being.

Doing paid caregiving work for me has allowed my sister, a new mom, flexible scheduling and the option to bring her child with her to work and I get to visit with them both. Doing paid caregiving work for me has allowed my partner to focus on school and his career goals while maintaining a loving relationship and not having to work in retail hell again.

My loved ones would have cared for me unpaid anyway, they have always told me this. But it is a job they both genuinely love, in the career path they're both on, and it is beneficial for all involved. If they didn't like doing it, if it was "violence", or an abusive workplace, they would not be here, they both have plenty of other job opportunities. They're not forced to do anything, ever. I have not (and never will) been violent towards my caregivers or yelled at them or been manipulative or anything like that. My caregivers would attest to this as well.

There is literally no reason for comments like these ones, and those comments are inherently ableist. High support needs people exist, and we need care. That is not violence. Check your privilege.

I feel like people often don’t talk about the experiences of disabled people who have caretakers because so much of the conversation is about us—not including us.

I receive in home care for 30 hours a week (+ 4 hours/week for respite). This is paid for by Medicaid (state insurance). Outside of paid hours, my primary caretakers care for me unpaid and assist me most of the time. I’m very rarely left alone due to my high support needs. Often, when I am left alone, I am completely bedridden or at minimum housebound. I have frequent emergency life threatening health problems, falls, and serious injuries even with support in place, and these things significantly increase when I’m on my own.

I’m extremely lucky that my paid caretakers are my partner, my sister (the only family member I have regular contact with, I’m estranged from the rest of my immediate family and most of my extended family) and my best friend.

I used to have agency staffing which was horrible for me and borderline traumatic. At several points, before doing the self directed care option (which allows me to choose my own staff, hire and train them myself and dictate hours for them), I opted to not have any staffing. I was regularly in the emergency room. I can’t drive, so I was having to walk and if I was lucky enough to be able to take the bus on occasion or get a ride from a Facebook acquaintance, they were few and far in between. I don’t have family support, and even my sister who is supportive wasn’t living in the state at the time and doesn’t have a car most of the time.

And before I could even choose which staffing option, even though medically it had been deemed essential for me to have in home care, even though my insurance covered it, I had to wait several years (I was 18 when I was approved) until I was 21 to qualify to start. The reason why: I was legally an “adult disabled child” because of my high support needs (which is funny because I STILL don’t have SSI at age 24) and thus legally unable to consent to my own care plan. I needed a blood relative to consent, and that same blood relative (who had to have proof of such!) couldn’t care for me. At the time, my sister was the only person who could’ve been my caregiver and also she is the only verifiable blood relative I have contact with for safety reasons, and my only relative on this side of the USA.

The first business day after my 21st birthday I immediately got things set up to get in home care.

This is out of date, I get assistance with more than just these highlighted ADL (activities of daily living) tasks now.

In short: my day-to-day life is entirely dependent on others.

And there’s power imbalances that exist between me and my caregivers, even with my current caregivers being amazing and anti-ableist. They will always exist. We talk about the power dynamics of me being dependent on them for my survival, and how heavy that weight can be for each of us.

Having caregivers often means that accessibility is extra difficult— I’ve been told straight up multiple times that I can’t have assistance from my caregivers to help me change in a changing room when we’re out shopping. That they can’t go into the bathroom with me, that they can’t help me get un/dressed during appointments, that they can’t come into spaces with me.

I’ve been denied access to psychiatric care because I can’t do my daily living tasks (ADLs- the highlighted items) independently. And when I’m in a hospital or emergency room, I can’t have my in home workers be paid to care for me, there’s an expectation that the nursing staff at the hospital will do it. Even though my caregivers were specifically trained to learn my body and needs for weeks and have been working with me for years. I have severe cPTSD and showering in front of a stranger is something I cannot do. I would rather fall or faint or get injured or just not shower than deal with that. But I’m expected to just let anyone have access to my body just because I’m physically disabled and need support.

When I faint/fall/get injured/have life threatening health issues arise while I’m not clothed, or when I’m otherwise vulnerable, I’m supposed to let strangers just touch me however they want to. I have to show them my chest (for my cardiac care) and let them poke and examine me. I can’t object without losing access to vital care.

I have agency. I have rights. I have autonomy. I deserve to be able to exercise these things.

[chronicallycouchbound]

Jewish protesters at the National March for Palestine in 📍London today 🍉

Photos: X: JustjewsUK

[chronicallycouchbound]

Thank you for sharing your stories. The unhoused joy ones in particular come back to my mind often. Wishing you strength and good luck!

Thank you for this! I appreciate the support 🖤

[chronicallycouchbound]

Help a multiply disabled bisexual brown Latina pay for an urgent medical test

My sister's situation with her eye has grown way worse since she had Covid recently. Turns out the reason she's become cross eyed this past few months with her eye lazy is due to miastenia gravis, which is a neuroimmune condition. Covid is known for its impact in both neurological and autoimmune conditions.

She called me crying today because she desperately needs to run some tests but doesn't have the funds. If you guys could help her we'd be over the moon. She works doing nails, and as per her work that we posted in my previous post crowdfunding for her, her work is incredible, but she keeps having it harder and harder to do it (which is her only source of income) with her eye like this.

She needs 205 USD. She's at zero right now, she had to borrow much less money from me yesterday for other medical expenses.

This is her Paypal and this is her Ko-fi.

0/205 USD

[chronicallycouchbound]

Fun fact: in the United States, most cities and towns have public land property records available online.

And a lot of places have squatter’s rights, often with some sort of stipulation, such as you need mail to the address, a utility in your name (actually very easy to set if you have the funds) or verification that you have been there every day. A photo with the daily newspaper every day can establish residence. After that, they have to do a full eviction process. Where you can have even more rights as a tenant.

Not all heroes wear capes

[chronicallycouchbound]

Grant’s Pass vs Johnson is among upcoming 2024 supreme court votes that would criminalize all homelessness federally.

Source

[chronicallycouchbound]

Make that make sense. People have to quit blaming the poor for being poor.

[chronicallycouchbound]

[chronicallycouchbound]

A reminder that it just takes one click to do something. Daily click here 🇵🇸

Biden’s government seem to just have approved the shipment of 2000 tons of bombs and 25 new jet fighters to Israel.

As in, yesterday. After the UN security council had mandated a cease fire. After the UN has published a report that says there are more than reasonable data to call what’s going on in Gaza a Genocide.

Yeah, now tell me how hard is Biden working for a cease fire. Cool story, bro.

https://www.washingtonpost.com/national-security/2024/03/29/us-weapons-israel-gaza-war/

[chronicallycouchbound]

Solidarity with Palestine: free e-books and further reading via Verso Books

https://www.versobooks.com/blogs/news/solidarity-with-palestine-free-resources-and-further-reading

[chronicallycouchbound]

goodnight everyone (:

do your daily click

spreadsheet of families in Gaza you can help today

donate to:

Buy an e-sim

Help diabetics in Gaza

The PCRF

Anera

UNRWA

Taawon

Help Gaza Children

Sudan Tarada Initiative

Help a Sudanese family escape conflict

Darfur Women Action

Ramadan for Sudan

Period products in Sudan

Sudan Emergency Appeal

[chronicallycouchbound]

the way that no one wears a mask at my local LGBTQ clinic, and in fact comments on my mask like it's just this hilarious little idiosyncrasy that I still wear one and not because I'm immunocompromised and we're in the middle of a pandemic ... as if there isn't an airborne virus that literally fucks up your immune system ... as if we didn't lose a generation of queer people to another virus that fucks up your immune system ...

[chronicallycouchbound]

the class war is not some hypothetical future event. class war is being waged right now, by the ruling class, against you, every single day of your life. the question is what you're going to do to fight back.

[chronicallycouchbound]

Protect yourself during earthquakes!

If possible, DROP! COVER! HOLD ON!

Using cane, DROP! COVER! HOLD ON!

Using walker, LOCK! COVER! HOLD ON!

Using wheelchair LOCK! COVER! HOLD ON!

[chronicallycouchbound]

[chronicallycouchbound]

I wanted to share the “city life” side of things!

I’ve been homeless at many points in my life, and much of that was as a trans youth (and minor for a lot of it) I also started having mobility related disabilities on the streets, but I have neurological, developmental and mental health conditions otherwise.

Almost all of my homelessness was in a rural area, but I was in a “hub”, a tiny city that did have several resources. I was also homeless in Seattle and the burbs around it for large chunks of my life before that.

“There’s enough charities in place to help our homeless population”

If there was enough, wouldn’t we be housed?

As a minor, in most cases, you cannot access a youth shelter without consent from your guardians, if there’s even one near you, there’s only 3 that are state-funded, and thus non religious, in my state.

It took months to try to convince my guardian to allow me access to the shelter, in the middle of blizzards and spending every night on the streets— across the country from anyone I may knew (we moved right before I became unhoused). I also had to wait until there was a bed available.

I was also turned away from religious charities (including local and salvation army) for being trans. I was a starving child, I just wanted food and maybe some shoes other than my holey sneakers. I was within “walking distance” of them most of the time. Because I (at the time) was physically able to walk 10 miles in a day. Even for a charity a couple blocks away it was difficult. I was doing this in blizzards, ice storms, no sidewalks, huge ice chunks and snowbanks having to crawl and fall through the snow. It was hell.

"if someone is homeless, they can just forage for food! Probably eating healthier than we are har har har!"

I did dumpster dive for food, but often got very sick from it. I was also working full time (as a minor I had to drop out of school so I could legally work full time) at a fast food place and could sneak meals. I was underweight and very malnourished. I won’t get into all of what I had to do to try to get basic needs met.

"well as long as they don't get into trouble, there won't be trouble!"

I am not someone with dark skin, but I’m not super light either, I usually describe it as “deep olive”. When I lived in the Pacific Northwest that was never really an issue, some people fetishized my skin color and hair texture and various features but other than some micro aggressions, I didn’t really have issues. New England was a completely different ball game, it’s almost 90% white people. This isn’t an exaggeration, it’s a well known fact of life here. Most people my age in NE didn’t meat a person of color at all in elementary school. I often go months without seeing a person of color I don’t already know.

So unsurprisingly, despite not breaking the law, I had police interactions almost daily when I was on the streets, and maybe once a week or so while in the shelter. Every time was either a) I “fit the description” of someone they were looking for or b) they wanted to check my immigration status (I was born in the US). They often would try to speak to me in Spanish, ask me for green cards, and they often began interactions with either their hands or a weapon pointed on me.

One of the only “perks” of becoming physically disabled is that cops started leaving me alone more and my skin lightened significantly due to meds. But my cane has been seen as a “weapon” many times before too.

We need collective liberation now. For all unhoused people.

Nothing shuts down a bougie conversation like "well, when I was homeless—" Nothing. It's one and done. They are fucking taken out. The conversation is dead. Done.