Disability Justice: 2020 Sacramento Women’s March

I spoke at the 2020 Sacramento Women’s March about disability justice.

Below is video (by Denice Ristau) and the transcript.


Disability Justice



Transcript:

Is there power in standing up?

That was a trick question.

Is there power in sitting down?

I’m disabled whether I’m standing or sitting. And I’m powerful both ways!

So, let’s change this phrasing: is there power in showing up?


Let me tell you about Rosa.

Rosa May Billinghurst would ram her wheelchair into police during protests in the early 1900s. She continued using her wheelchair to make a path for herself even after being violently thrown out of her chair intentionally damaged by police.

Rosa was called “the cripple suffragette.”

Rosa claimed her space and she made it known she would be counted as a disabled woman and nothing less.

So I’m here to tell you:

Continue reading Disability Justice: 2020 Sacramento Women’s March

What Debilitating Fatigue Feels Like While It’s Happening

I live with Ankylosing Spondylitis (AS), or Axial Spondyloarthritis (AxSpA) – the two names represent the same disease. AS is a systemic disease, which means it can impact multiple joints as well as organs. Fatigue isn’t an organ or a joint, but it is a big part of living with AS; a part that doesn’t get a lot of attention.

AS is characterized by inflammation throughout the body, which causes pain. Our bodies are busy fighting this inflammation and pain all the time; when we’re at rest as well as when we’re active, which is exhausting to say the least. Fatigue is a result of our bodies working overtime to fight constant inflammation; our body’s response to its own attempts to save us from ourselves.

Note: that paragraph above is my hypothesis as someone with the disease – it’s not something I have researched or proven.

I managed to write the following during one of the worst fatigue flares of my life. I focused all my attention on channeling the fuzzy thoughts in my head through my fingers to the keyboard on my phone instead of allowing myself the rest my body was begging for. I felt it was important to get the experience down in the moment so I could look back later and understand what I was really feeling. I wanted to document the truth so I would believe what I truly go through, because it’s so easy to question and dissociate from such things after the fact.

Continue reading What Debilitating Fatigue Feels Like While It’s Happening

The Social Progression of Ankylosing Spondylitis

When I was diagnosed with Ankylosing Spondylitis (AS), my world was upended.

I lived in a state of shock for the first month or so, clinging to hope that the diagnosis wasn’t really what I had.

I talked myself out of it. Or at least I tried: 

“I can’t have this incurable disease, can I? Maybe I imagined my symptoms, my pain, my fatigue – all those years of unanswered medical woes.”

I thought these things while also dreading the reality that I knew was true. This disease was with me for life. Period.

And then I learned I wasn’t alone. Everything I was experiencing – emotional, social, physical, medical – was being experienced by millions of strangers I would never meet.

I only realized, years later, the social progression of Ankylosing Spondylitis is something we all experience in our own way. We with the disease have conversations with ourselves, with our friends and family, with our disease community, our doctors, our medications, our side effects. 

The social progression with this disease is real and normal and natural, yet lonely all the same. It happens in different ways for all of us, and it continues for the rest of our lives as we adapt and change and grow and … well, survive our own bodies doing their best to survive.


Continue reading The Social Progression of Ankylosing Spondylitis

The Privilege of Having Enough

Black Friday, the day that foreshadows how the market will perform through the new year, was actually a dark day in history (in case you didn’t know) representing a large-scale financial crisis because of greedy Wall Street financers in the 1800s.

Gosh, sounds familiar.

Now we’ve reclaimed the meaning of that day, or rather, corporations have reclaimed it and turned it into a day of splurging and materialism. Cash flows from regular folks’ pockets into the wallets of billionaires and executives who source labor from the underemployed and materials from China. I mean, I am exaggerating a little.

A little.

Let’s Back Up a Bit

I used to spend the day after Thanksgiving going on hikes or long runs and enjoying how empty everything was that wasn’t a store. The outside world was my oyster for that quiet, quiet day.

I refused to utter the words “Black Friday” because I staunchly opposed what the day had come to mean: greed and a blatant disregard for the environmental destruction that comes with unfettered materialism.

Instead, I called it Buy Nothing Day along with millions of other environmentalists who human-cott the spending spree that is Black Friday.

On Buy Nothing Day, I distanced myself from over-stressed employees and screaming throngs of people breaking down doors, running people over, and fighting over highly discounted flat-screen televisions. I was horrified by this violence that resulted in mountains of plastic, cardboard, and Styrofoam and; inevitably, piles of broken electronics and discarded toys after mere months of use.

To me, Black Friday represented the worst humanity has to offer – a piling up of vices so-to-speak – and I stayed as far away as possible.

Then My Life Changed

In 2013 I was diagnosed with a disease that runs in my family (Ankylosing Spondylitis)  that upended my world and disabled me in a matter of a few years. Continue reading The Privilege of Having Enough

a voice for many

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