All posts by BeingCharis

Fashion, androgynous, and artistic model with Ankylosing Spondylitis Queer Disabled Speaker Writer

Here’s Why I Endorsed Elizabeth Warren for President

My entrance into hands-on political engagement began in 2008.

President Barack Obama was the first president I could vote for after I turned 18. I volunteered for him in both 2008 & 2012 & shook his hand at a rally a week before the 2008 election. His hand was soft & wrinkly & thin. I didn’t wash my hand for a week for good luck (ok, yes, I know that’s gross).

I grew up overhearing whispers about President Bill Clinton’s impeachment, his iconic, “I did not have sexual relations with that woman” soundbite & then the grumbling about President George W. Bush’s “nuke-yule-er” pronunciation & his politics.

Obama restored my patriotism. I remember wanting to be a proud American again during his campaign and after his first election.

In college (2007 – 2008) I researched media portrayal of US womxn running for President & Vice President. There were only four to research: Shirley Chisholm (#BlackHistory), Geraldine Ferraro, Sarah Palin & Hillary Clinton. Since then, the number of womxn who’ve viably run for president has more than doubled.

For me, since college, jobs, moves across the country & buying my house; I’ve continued to be politically involved in different ways.

Since being diagnosed with AS, a debilitating progressive disease (watch my TEDx talk about it), I’ve seen a lot of politics via my healthcare advocacy/activism on local, state, & federal levels.

I know how politics work on the inside, from the outside, is what I’m saying. Continue reading Here’s Why I Endorsed Elizabeth Warren for President

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