disability, poverty

A 2026 Example of Legislated Poverty

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Hey followers, I know it’s been a while.

As you can imagine, the last six years have taken a lot out of me and a lot from me. I put everything I had into fighting COVID eugenics, and yet here we are in this prolonged ongoing pandemic in a worse place than we began.

I’m also currently reeling from the recent, huge loss of Alice Wong. I’m engulfed in grief about losing her, losing Tinu Abayomi-Paul last year, and losing so many other disabled community members in between.

I have many life updates for you all, but I can’t go there right now. I’m beyond capacity for going deep and I’m going to listen to my brain and body about that.

There’s no way to introduce the topic of this post other than diving right in.

The realities of living in legislated poverty are not widely discussed, so I write about them in various places and at various times to educate folks who have no idea.

You can read all of the general statistics, but it sometimes doesn’t make sense until someone tells you their own story, because that’s real. That’s tangible.

I’m writing this to share a single personal example about the intertwining of federal and state public aid systems that are designed to keep the poorest people poor, while those who write the legislation claim it helps people thrive.

Capitalist systems are designed to punish people who do not, cannot, produce profit.

I was granted SSDI in 2018. It’s hard to believe that was nearly eight years ago already. It’ll take another two years for me to have received enough SSDI to match the annual salary of the administrative law judge who approved my case.

Anyhow,

…towards the end of each year, the Social Security Administration announces the Cost of Living Adjustment (COLA) for people who receive Social Security benefits. The COLA for disability benefits recipients is a monthly increase that’s based on a comparison of the economy during the previous year’s third quarter and the current year’s third quarter.

Some years there’s no increase at all (2010, 2011, 2016). The highest ever increase was in 1980 (14.3%). The most recent “big” increase was in 2023 (8.7%).

This coming year, 2026, the increase is 2.8%. For me on SSDI, that is an additional $36/month.

Fortunately (hilariously), I’m poor enough that my Medicare premium is covered by California, but for many the COLA isn’t enough to cover the annual increase in Medicare premiums or it is mostly swallowed. 2025’s standard Medicare premium is $185/month. 2026’s is $202.90. That’s an increase of $17.90.

Let’s pretend for a moment that I needed to pay that increase; that means $17.90 taken out of my COLA of $36, which leaves me with $18.10/month “extra.”

Ok, let that sit for a moment.

Now, let’s shift to SNAP (formerly food stamps). Because of my SSDI increase, my monthly SNAP allotment has been automatically decreased by $16.

Remember, I had $18.10 left of my COLA after the example of me needing to cover the Medicare premium increase?

Now let’s subtract the $16 that was removed from my monthly SNAP amount, which overall leaves me with a $2.10 COLA. That’s enough for a candy bar each month, yay!

Except don’t forget the cost of food is ever increasing.

Ok, let all that sit for a moment.

And come back to my reality, which is less bad on a miniscule level.

Since I don’t have to cover the Medicare premium increase (or the premium at all, which makes me extremely lucky — imagine that, being lucky I’m that poor that the state covers it), I just have to remove the loss in food stamps ($16) from the COLA ($36), which leaves me with a $20 monthly increase in income for 2026.

My friends and I joke every year about what I could buy with my annual increase in riches, so that could cover, what, a half a tank of gas? Two or three dozen eggs? A pony!?

What do you spend $20/month on? What do you spend $20/day on?

Here’s a bonus, complicated tidbit for your anger:

Disability income (SSDI) is based on how much people made before becoming disabled. It’s not based on need. It’s not based on how disabled someone is. It’s not based on location. It’s based on capitalism’s perspective of how valuable a person is based on the profit they were producing before their body and/or mind could not produce that profit any longer.

And that means that SSDI income calculations parallel gender, race, class and age pay gaps, for example.

A final, important, and infuriating note: I’m far from the poorest SSDI recipient, so my increase is way more than many. And I haven’t even touched on how excruciatingly worse it is for SSI recipients.

That’s it for now, folks. Let me know how this info sits with you, and feel free to comment with your own experience.

Keep fighting, friends, and keep keeping community alive. OK?

If you’re curious to learn more about what I’ve shared, I urge you to do some reading about benefits cliffs; asset limits; and especially about disability marriage inequality (I highly recommend watching Patrice: The Movie!), which affects SSI recipients more than SSDI recipients, but it gets complicated when you add in Medicaid and SNAP and such regardless of the benefits source.

chronic pain, poetry

Migrating Salmon & heartbeat songs | a Poem For Pain Month

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There is a roaring river beneath my skin, glacial ice flowing, collapsing everything in its path

Fish push through veins too small for them, swimming upstream

I feel my heartbeat everywhere

A trembling thud repeated and passed along, firing along corridors of joint and tissue

Durn dunh

Durn dunh

Durn dunh

In my fingers, one by one, a beat – keyboard style, like waves of smooth hypocritical staccato beats traveling from knuckle to knuckle. January March May July … the months with 31 days beat the most blood.

Continue reading Migrating Salmon & heartbeat songs | a Poem For Pain Month →
chronic disease, Current Events, Self-Help

What Parent Guilt Shows Us About Privilege Guilt | Guest Post

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Hi! This essay is a guest post written by my friend, Patricia. It explores her perspective as a white chronically ill parent of a white chronically ill child, and draws parallels between her experiences of ‘parent guilt’ and ‘privilege guilt.’

The stories and health details about Joe and John are shared with consent.

Content note: this post includes discussions of medical experiences & symptoms including surgery & skin wounds

Here’s Patricia!:

Hi. I am thrilled to be here talking with you, my fellow Fans of Charis. Let’s dive right in.

If you and your child have chronic illness and/or are disabled, it is very likely that you’ve experienced some guilt about it. There’s plenty to choose from: the guilt that comes with parenthood and the guilt that comes with passing your illness on to your child. Today I want to expand on that even further. In this historical moment of possible structural shift, at this possible tipping point away from the world that encouraged the murder of George Floyd and so many others and toward something new, I want to look from our parent guilt to our national guilt. (To allow us each to think about our various privileges, I’ll call it “privilege guilt.”) Today I would like to ask whether how we respond to our parent guilt can teach us something about how to move forward as a guilt-stricken nation.

First, let’s consider the chronically ill disabled child. Let’s start with Joe.

***

If you already know the comorbidity story by heart, feel free to skip this section.

I gave several terrible gifts to to my son, Joseph. Some are hereditary things that I also suffer from, and others I can say I gave him by virtue of the fact that it was my body he was formed in. First, I passed to him a laxity of the connective tissues called hypermobility syndrome, a mild form of Ehlers-Danlos (EDS). As his bones grew, it slowly became apparent that he also had something termed “miserable misalignment syndrome,” aka “torsional abnormality.” Basically, this meant his shin bones were rotated about 30 degrees off center. Together with the EDS, this caused countless dislocations of his knees and an inability to walk or stand for more than a few minutes. In junior high, after years of PT, he underwent a series of astonishing corrective surgeries that have allowed him to walk with less pain and far fewer dislocations, although he still has trouble standing and walking more than a couple of blocks.

A picture from behind of a white-appearing healthcare provider with white lab coat with her hand slightly on the back of a young white teenager's back. He wears a blue hospital gown and takes a walk using a walker down a hospital hallway
Joe walking after a surgery. Author’s photo.

Continue reading What Parent Guilt Shows Us About Privilege Guilt | Guest Post →

Black Lives Matter, Current Events, George Floyd

White Rights Are Wrong

CN: racism, violence, police, white supremacy, murder

A 400+ year campaign slogan “We’re white and right!”?

Is wrong,

Whites and rights don’t get along.

They’d rather be white than right
White flight takes a wrong turn
When supremacists end up taking
Turns
Spinning shots
Shooting shot guns

Knees on necks

(“Don’t tread on me”)

Waving flags that took rights

Waving flags that took lives

Protecting monuments of fear

Monumental injustice Continue reading White Rights Are Wrong →

a voice for many