Tag Archives: Medicare

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.

Advocacy, disability

I Told My Story at the 2018 Women’s March in Sacramento

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Below is a video and transcript of the speech I gave at the 2018 Women’s March in Sacramento. The current video may be updated with an official rally video after it is released.

(Video courtesy of Darcy Totten, Activism Articulated)

Sacramento!!!

My name is Charis.

Five years ago I was asked to testify on a bill and I said to the person, “I am nobody, how can you expect me to say anything to convince these lawmakers to choose the right thing?”

She said, “Charis, all you have to do is share your story. Nobody can tell your story for you.”

Sacramento! Can you share your stories? That’s all you have to do.

I’m a former college athlete. I graduated magna cum laude from a women’s college and I paid off my college loans in 6 years. I could do anything!

But.

Then I was diagnosed with Ankylosing Spondylitis. You can’t tell because I’m hiding the pain, but Ankylosing Spondylitis hurts like hell and my body’s working overtime just to survive. I also live with Post Traumatic Stress Disorder, Depression, and Anxiety.

In 2016, I made the hardest decision of my life. I applied for Social Security Disability. Now, two years later, I am still waiting for a decision on my case. For two years I’ve been surviving on savings and occasional financial help. But with Sacramento’s rent rising astronomically and my savings and health in decline, my future is uncertain at best. Continue reading I Told My Story at the 2018 Women’s March in Sacramento →

#sickbody, Advocacy, ankylosing spondylitis, chronic disease, chronic pain, Current Events, disability, health, Health Insurance, Healthcare, Inequality, Invisible disease, Patient Advocacy, Politics, spondyloarthritis, SSDI, Uncategorized

The Affordable Care Act is Not Affordable for Me

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My previous post, The Work of Being a Professional Patient, needed a second chapter. There’s more to that broken system than simply being an unpaid professional patient.  In addition to the phone calls, meetings, emails – the legwork of managing our healthcare as chronic disease patients – there’s a lot of money involved, and a lot of it flows out of the pockets of people who can’t afford the care they need.

The system is broken.

It is a system designed for healthy people to get catastrophically sick and go from there. A system that punishes people for being sick but provides no support to keep them from getting sick.  Only $251 is spent per capita on public health measures aimed at proactively preventing illness.

The American healthcare system pads the wallets of health insurance and big pharma companies and often doctors and nurses too, then forces patients to do their work for them. America, land of the sick, home of the outsourced labor in our own back yards: people paying corporations a big chunk of their income for the privilege of managing their own healthcare.

Privilege is a dangerous word. I’m privileged? to be chronically ill and I pay over 10% of my monthly budget on my healthcare premium alone, after the assistance of the federal subsidy intended to keep my rates within my income limits. This does not include my out of pocket expenses on doctor visit copays, prescription copays, over the counter NSAIDs, heating pads, and various treatments to manage side effects of either medication or illness. Continue reading The Affordable Care Act is Not Affordable for Me →