The Right to Ignorance 

Some of you may know that I have been homebound for the past six years. My chemical intolerance coupled with my immunodeficiency have made it impossible for me to leave my home. I have been venturing out into the world again recently and although there have been paramount changes politically, culturally and environmentally during my requisite reclusivity, many things remain the same. It is nauseatingly evident that people still dismiss me because of my physical disability; that I remain invisible; that people address whoever I am with in regard to my well-being instead of consulting me. I used to believe that if I advocated enough, if I spoke up, if I excelled academically, then people would understand. I did. They still don’t. I graduated summa cum laude with honors and people still talk to me as though I’m two years old, or not at all. Regardless of my own attempts to solidify my humanity, people always reserve the right to ignorance. 


Me Too: Sexual Assault and Disability 

One in three people with a disability is sexually assaulted or raped by a SERVICE PROVIDER. 

Today, I could have been one of them. I was awoken by a knock at the door. This is the second time that this physical therapist contracted with Far Northern Regional Center has shown up without notice or arrangement at my HOUSE. I have signed no authorization permiting the release of personal information, let alone scheduled any kind of appointment. On what planet is it acceptable to show up at a non-client’s house? What was he expecting? That I would open the door to a complete stranger? That I would be home alone and physically unable to resist a forced entry? 

The reality is that many people with disabilities do not have family members to physically protect them. Many individuals living in group homes or other assisted-living facilities are assaulted by the very people who are supposed to be caring for them. Because some of these individuals may be non-verbal or struggle to physically communicate, this violation may never be validated or followed up by legal persecution.

Thankfully, I am able to speak up, to speak out, and to assert that there something is alarmingly wrong with this scenario.
I’m filing a formal complaint with the police department.

The Best Advice

No matter how well intentioned, unsolicited medical and health advice waves crimson flags for me. In addition to simplifying the health challenges any individual is dealing with, a barrage of Google search treatments sent my way misrepresents the multifaceted individuality of chronic illness. Moreover, the subtext often feels to me like a disempowerment; as though someone else could orchestrate better my own healing. Perhaps one of the most terrifying popular patterns propagated within the chronic illness community is the urgent assertion that somebody else pursue the exact same treatment, in essence, a universal prescription. Not only is this dangerous, but it reaffirms the erroneous one size fits all paradigm for healing. Although I am happy to share about my successes and failures with chronic illness, I intentionally abstain from providing advice or recommendations. I do try, however, to be a supportive ally and transparent about the complex reality of chronic survival.

Stay Human 

I resent the categorization of humans who care about other humans as zealots, pessimistic, unpatriotic or otherwise. How the belief that concern for humanity translates to negative connotation exemplifies perfectly the severely misguided reality of our hegemony. 

End rant…for now.

Be Here

A lifetime of chronic illness has often made me an observer instead of a participant. As if conducting an ethnographic study, I view others with a curious eye. You wouldn’t believe how many people are “too busy.” They have work to do, papers to grade, money to make, somewhere, anywhere, to be but here. The vulnerability and limitations of chronic illness do not permit these distractions, challenging the normative production rat race. Someday the healthy people of the world will be scurrying ahead when tragedy strikes. Somebody they love will die, and all at once, the tedious multitasking will become heartbreakingly superfluous. Busy can wait. Life won’t. Be here now; be here now with those you treasure.

The Last Dollar 

The diminished purchasing power of the dollar never seemed so macabre until that last dollar crumpled in your pocket is what stands between your life and your death. With medical insurance corrupted and virtually nonexistent, the unrealistic expectation to cultivate exorbitant piles of money to save your own life is omnipresent. Can I afford my medications, specialized diet, and keep the electricity pumping today? Tomorrow? Next week?

I’m Not The Underdog

The censorship of the ugliness surrounding chronic illness is abhorrent. My socialization as a human who has endured torturous pain and suffering, makes me feel as though I’m a dog in obedience training. My honesty about such intense trauma is deemed “negative” and thus goes ignored and invalidated by most people I know. On the rare occasion that I share socially appropriate, productive tidbits, I am rewarded with attention. Frankly, this really grinds me to the core. My unsavory situation challenges the privileges enjoyed by the healthy and exposes guilt.

Instead of turning away from the perceived “negativity,” I encourage healthy folk to validate, respect and jump into others’ realities. Recognize the vulnerability and instability of our very beings, and the permeating struggle we endure. Turn not away, but toward…

I am using this example to illustrate not only how society adamantly steers attention away from suffering and toward production but also how we expect the chronically ill to get something positive out of their illnesses. I’m supposed to be an underdog: to shine through the adversity, to overcome my pain, to have gained something golden and triumphant from my suffering. This is all nonsense, in my experience.

By focusing on a happy ending, we are detracting from the validity of an inhumane now. We are also, as a society, preaching the ideology that if somebody is not doing something tangible, their value isn’t adding up to much.This system of measuring worth through production and the demand to create beauty from torture is damaging to people chronic illness, among others.
We all deserve a more life affirming mentality. A paradigm of morality cultivated through unconditional respect, proclaiming value for all and actualizing the behavior to construct a more engaging reality for all humans.

Human Again

The purpose of a diagnosis is to provide appropriate treatment for healing. When, instead, diagnoses line up like soldiers trotting off into landmines, they only seem to detonate within my psyche.

I died on the the day I was born. The barrage of labels slung at me since, many fatal, some pitifully inaccurate, most both, corkscrewed themselves into my humanity. Tugging ferociously at my uniqueness, they warped me into a homogenous glob of wrong.

A few months ago, I made a decision to release my labels. I’ve changed my language, the way I present, speak about and think about the collection of my experiences. Much to my surprise, it seems as though the more I release the chokehold around identity and illness, so too do the fingers of desperation, shame and sickness release me.

Every day, myriad times a day, I remind myself that I am wonderfully human, nothing more, nothing less.

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Hey everybody! I just received notice that several of my works are being published in the Chico State Journalism Department’s Magazine, Revelare! Wow, this is such an incredible honor and progression in my writing career. I am ecstatic to spread my words like pearlescent laquer across the visages of uncharted audiences! With every word, with every sentiment, I imbue a vision for a more equalitarian society for us all.

I’m jubilant about this opportunity to share my writing and multimedia art with the University and community and beyond! I’m proud to be a CSUC alumna!

Please take a tour of my recent multimedia creations and dazzle me with your commentary on Instagram