Category Archives: Inequality

Inequality, sacramento

In Support of Rent Control in Sacramento

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I’m a severely low-income resident of Sacramento.

This might surprise you considering I’m pretty well-known for my advocacy related to healthcare, disability, and chronic diseases. You’ve seen me on the Sacramento TEDx stage, the Women’s March on Sacramento, in press conferences and on healthcare panels, in this upcoming documentary, and in numerous television interviews about national healthcare policies.

Someone so steeped in the public eye shouldn’t have a worry about housing, right?

Yet what I haven’t talked about publicly is my very fear of becoming homeless. I’ve reached out to local representatives about my fears only to be redirected or ignored completely. It’s time you know what it’s like for me facing barriers to safe, stable, affordable housing in Sacramento, California.

Mid-June 2018 I was officially granted permanent disability benefits, Continue reading In Support of Rent Control in Sacramento →

chronic disease, disability, Equality, Inequality, SSDI, SSI

Being Disabled Is a Job

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I’ve heard some say disability benefits are unnecessary hand-outs for people who should just die off, and why should hard-working people foot the bill for people who are lazy, whose lives mean nothing?

The disability process itself mirrors these same sentiments – the 3-5 years (on average) process for applying, fighting for, and receiving disability (SSI or SSDI) in the USA is by nature a grueling process, with analysts hired to deny applicants not once, but twice (standard procedure), forcing the applicant to appeal their case twice over several months before a hearing is granted, which then takes years to schedule due to a shortage of judges. It is a process intended to force people to give up.

You usually have to be literally dying to be automatically granted disability in the USA. And yet 10,000 people still die each year just waiting for a decision. Continue reading Being Disabled Is a Job →

#sickbody, Advocacy, ankylosing spondylitis, Arthritis, Charis, chronic disease, chronic pain, Current Events, disability, Equality, Gender, health, Inequality, Invisible disease, Politics, sickness, spondyloarthritis, Women, Women's Rights

A New Wheelchair User’s Experience at the Women’s March

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The first time I used a wheelchair was after tearing my ACL during a college soccer match in Washington, D.C. in 2005. My teammates convinced me to use one when we visited the Holocaust Museum, instead of crutches. I remember feeling invisible. I remember being trapped in the middle of congested hallways and exhibit rooms, seeing nothing but the backs of people scooting around and in front of me like I was a planter box in their way. I remember feeling empathy for people who spend a majority of their lives in a wheelchair. I hardly remember anything about the museum from that visit. And I became terrified of ever needing to use a wheelchair again.

On January 21st, 2017, I rolled in the Women’s March on Sacramento alongside some 30,000 people. I have only recently, very reluctantly, decided to begin using a wheelchair because of deteriorating health. My experience from college still haunts me, but I am learning to embrace how much more fully I can participate in life by using assistive devices that reduce pain and fatigue caused by Ankylosing Spondylitis. It’s the difference between staying home and showing up.

However, I was nervous about navigating the march, even with friends to help push me. I expected that I would spend all my energy advocating for space just to be able to proceed in a straight line. I thought I might regret the decision to use the chair, even though not using it could result in being bedridden for days or weeks.

Would I return home wishing I had not gone? Continue reading A New Wheelchair User’s Experience at the Women’s March →

#sickbody, Advocacy, Charis, chronic disease, chronic pain, Current Events, Death, disability, health, Health Insurance, Healthcare, Inequality, Invisible disease, Medicaid, Patient Advocacy, Politics, sickness, SSDI

Repealing Obamacare Could Kill me

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The Affordable Care Act (affectionately termed Obamacare) is likely to be repealed in a few months.

I’m told personal stories are powerful, so I want to share mine.

I was always going to be healthy. Aside from a slight concern when I quit a job that offered health insurance and took another job without it, I never once considered I would need a team of doctors. I boast a background as a college athlete, professional mover (yes, heavy furniture, etc) and otherwise health-aware person.

But my body lied to me.

Nearly four years ago, I was diagnosed with Ankylosing Spondylitis, a severe disease that causes rampant and painful inflammation in the spine and other joints in the body, sometimes leading to the growth of bone spurs that fuse spinal vertebrae and hips. I wasn’t diagnosed by a healthcare provider at first – I found out I inherited this disease from my father after matching our symptoms.

Four years ago, I had a dilemma. Continue reading Repealing Obamacare Could Kill me →