Wildfires in California 

Hi there, for those of you who do not know, I am a Chico, California local. I live just minutes away from Paradise, a community that has been reduced to ashes. The intensity of smoke in my neighborhood is so engulfing that I cannot open my front door. I can only imagine the fear, isolation and need for individuals who have lost their homes and are forced to reside in parking lots. 

Because the wildfire disaster has initiated emergent need for individuals in Butte, the Guardians of Hope awards will be geared toward individuals with chronic illnesses that have been personally affected by the Camp Fire. The initial award amount will be $500, however, the more money raised, the more individuals that I can support. As a chronically ill Chicoan, I can appreciate deeply the enormous burden this fire adds to an already difficult life. Thank you for all you do to support our community and for empowering the Guardians of Hope to do more for our community!
https://www.gofundme.com/sunshine-in-your-pocket


Or go HERE! this is a rare opportunity to connect and literally save a life in this time of disaster! Please help!

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The Early Days of A Better World

The day of 2008 presidential election is one I remember in stunning detail. Huddled around my purple fluorescent-covered laptop, anticipation and the pure innocence of being a new voter hummed through me. The culmination of my newly declared major (sociology,) commitment to advocacy and whimsical idealistic imagination peaked when history was made on that night. Proudly boasting my white T-shirt with bold blue letters tracing O B A M A ’08, my feet carried me away from my computer screen and down the steps of my porch. I danced circles around my lawn, barefooted, screaming with joy. This. This was the beginning of representation for stigmatized individuals like me; the collective acknowledgment of invisible populations; the promise of equalizing change and empowerment for minority members. As I twirled dreamily underneath the starlit evening, I marveled at the joy of seeing my own white faced, green-eyed reflection perfectly in my chosen representative. I think about that night often lately. Mostly, I just want to cry, to mourn this memory like a beloved treasure…lost. What would happen if I wore that same T-shirt today? The truth is that I don’t know that I would have the courage to leave my house wearing this shirt in 2018. My celebration of our former president’s integrity, commitment to equality and character remain in tact. What before bloomed as a burgeoning desire to see oneself in the ‘other,’ though, has been crushed with a stampede to kill him. 
Vote.

Photograph by @babesagainstbull

Find me @brianabeaver1

Power to the People 


Guardians of Hope is not only a community-based project providing financial support to individuals with chronic illness. The GOH is a representation of our ability, our decision to take back our own power. Should we continue to be reliant upon federal agencies and even foundations for health related supports, we will continue to go without the necessary medical treatment we need. The foundational ideology of systematic healthcare as we know it, answers to the bottom line of financial gain. Because of this complex bureaucratic infrastructure, it feels insurmountable to make a significant impact. The founding principles of GOH empower each of us to support one another. It’s that simple! All of the monies raised will be awarded to the chosen recipients. There is no overhead or distribution of funds for non-human based care. By becoming a Guardian, you are voicing your commitment to humanity, to acknowledging the opportunity we all have to step up, make a difference and save lives. Yes, we are doing this! Thank you so much to everybody who has not only made a contribution, but also a declaration to take action in supporting one another so far. Only one hundred dollars left to raise until we will open the application process. Won’t you join the Guardians Community today? Gifts of all sizes make a difference and save lives!

Thank you!

Cerebral Palsy and Me

I just found out that World Cerebral Palsy Day is on October 6th, which is my birthday and ironically, the day I acquired what is known as “Cerebral palsy.” Weird coincidence, right? What may sound even more ironic is that I don’t believe it Cerebral palsy is a real thing. Before you consult google for a definition I will no doubt find to be flawed, inaccurate and more than likely, insulting, hear me out. CP is in umbrella diagnosis for a prolonged lack of oxygen (anoxia) around the time of birth which results in brain damage related to the movement control center of the brain. CP is not genetic, not a disease or a disorder, it is the result of a trauma, which can happen while still in utero. So, while the brain damage and resulting changes in movement, speech, coordination and balance are very real, I think having a severe and ominous sounding diagnosis is doing a disservice not only for those of us who have CP but for those of us who don’t. Because obtaining this diagnosis is often delayed, adequate support for new parents with a baby with CP are often not available. Even if they were, however, I believe the resulting socialization that follows this label is quite dehumanizing; it is a cue for fear, misunderstanding, dismissal, self-doubt and a harbinger of social chaos. Because people have heard of CP, they usually have what can be terrifying assumptions about what this means. The more people toss around this label, the more convoluted and terrifying it becomes. The more terrifying it becomes, the more I need to disassemble falsehoods and reassure others 1) I’m not contagious. 2) this is not a disease, disorder or progressive malady and 3) I’m human. Too.

I support disability awareness as a whole on the basis of the inclusion, acceptance and empowerment. I’m not a fan of CP awareness because this is only emphasizes this specific label as master status and perpetuates exclusion. If you’re interested in more background information regarding why I think CP is an ineffective label from a medical standpoint, let me know and I will happily elaborate.


The takeaway is that because CP is not in and of itself, a medical issue, disease, or biological abnormality, I’d rather that these characteristics not be named. I’d rather have differing abilities be recognized as nothing more, nothing less, with my full humanity always coming first.

Person First Language

Semantics matter. I’m not saying this simply because I am a writer and words are my tools of liberation. The way we talk about one another, the use of words and their placement in syntax can make a world of difference. Let’s talk about people first language! I’ve been a proponent of this since my childhood years; standing up in front of community service groups, my voice arcing out across adults. “I have a disability. I am not disabled.” For me, the meaning of these two different sentences is extraordinary. The first, which is what I say, indicates that a disability is part of me, it is not the whole me. I am a human first, who so happens to have a disability, much in the same way that I also happen to have hazel eyes, curly hair and a penchant for puppies. Although having a disability is certainly a master status, meaning that it influences my life in profound ways, the nature of these influences is social. In other words, having a disability inherently means nothing; it is the meaning that others ascribe to this label that diminishes my existence. I encourage everybody to think about the way we describe one another and to adopt the empowering and humanizing practice of person first language.

Healthcare For Humanity

Although it is liberating to be without a central line, the reasons behind necessitating its end are not benevolent or demonstrative of revelational healing. The irony is that I hardly even used my line. The bureaucratic shortcomings of infusion companies, TPN pharmacies and what are supposed to be supportive services precluded me from getting the care I needed. I am outraged by the lack of sensitivity, integrity, respect and professionalism of in-home nursing services. In my quest to find appropriate TPN care, I contacted many pharmacies, explaining in detail my needs. They responded empathetically, promising to return my calls. I never heard from them again. The ineptitude of medical care cannot simply be a failing of intellect, it is a failing of morality. Because these and more problems happened repeatedly, it is not an aberration, but rather, a reflection of the devaluation of the lives of individuals with chronic illness. This is not OK. Luckily, I was able to pursue other avenues to improve my absorption so I was not TPN dependent. Many other people don’t have this privilege. A paradigm shift in the perspectives we propagate about individuals with chronic illness needs a revision. In order to serve people who truly need support, we must first recognize fully their complete humanity.

Announcement! 

THE DAY HAS FINALLY COME! I just picked up the manuscript for my book! Holding in my hands the culmination of years’ writing, of tales of trauma I thought I could never live to share, of heartbreak pulverizing pulp–is such a heavy experience! This book is the most authentic and uncensored way to know where I have been and what I have survived. I am so grateful to the incredible team of artists and graphic designers who have skillfully collaborated with me to illustrate my words so precisely. Joy, joy, joy! What an incredible opportunity it is for me to experience my own words in this way. Stay tuned for the book release! YAAAAYYYY!

Please follow me on Instagram @brianabeaver1 for a sneak peeks and behind the scenes updates!

Because You’re Beautiful 

Here is the thing, I really don’t care. I know that many people with chronic illnesses encounter immense embarrassment with the use of mobility aids and central lines in public. While I can certainly relate to the unwelcome stares, judgment and probable castigation, the reality is that I have been encountering unwelcome assessment of my existence since the day I appeared on this planet. Having Cerebral Palsy matriculated me into a strange subgroup whereby people felt the need to insert their own opinions, suggested cures and ridiculous divinations since my kindergarten years. I have been approached by complete strangers offering prayer, reconciliation for my assumed karmic transgressions and unsolicited approval since my toddling days. Sure, I get mad, I craft flippant replies which I sometimes voice, I’ll bemoan the injustice of it all and then I keep going. So, when I recently made a lap around the local natural health food store with my giant urine-colored TPN bag in toe, I greeted each wandering eye with pride. I smiled, calling upon the reasoning my mother has offered since my childhood; they stare because you are so beautiful.

Critically Speaking 

I find it curious that those who frequently castigate my writing have never been demoted to the fringes of survival. If the vulnerability and authenticity of my posts reminds the healthy of their own mortality, may that be a force for empathy and compassion, not judgment. Inauthentic positivity inhibits my healing and trivializes the torture that individuals with chronic illnesses endure to exist. Additionally, a prescription for positivity can literally be elusive for many physiological circumstances. A physical barricade for internal equilibrium can be imposed by many chronic health conditions. Instead of criticizing uncensored vulnerability, please lend support, offer to help or remain silent.

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.