Disability and Identity

There is no shortage of opinions circulating social media about chronic illness, disability and identity. Personally, I often feel bombarded by self-proclaimed experts telling me not to let my illnesses define me; that if my entire identity is engulfed by my unrelenting challenges, I am somehow capitulating. Among a cadre of objections I have to this mentality, the most salient is that there is no one size fits all mentality or mindset. Uniqueness dictates a fluctuating perception, as does the trajectory of our experiences. If your primary identity today feels like your illness, perfect. That deserves validation. If your primary identity tomorrow is something completely different, perfect. Self-criticism is often a reflection of erroneous societal expectations that you’re not doing it right. I believe the more we can recognize these external, albeit powerful beliefs systems, the more we can give ourselves permission to exist more peacefully, more holistically within them. Just be yourself.

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Disability and Education

I wanted to take a few moments to talk with you about the founding principles of the Guardians of Hope Academic Advsing Philosophy. I subscribe to the ideology that disability is a social construct, meaning it is created by humans. The collection of physical manifestations associated with disability as a label are ascribed, not inherent. What this means is that the “limitations” society informs people with disabilities that they have are subjective. These are PERCEIVED limitations. The necessity of accommodations for facilitating educational accessibility does not signify any kind of weakness or lack of ability.

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Because I believe we all have the right to accessible, inclusive education, I am dedicated to advocating for nothing less than equal. The self-confidence I developed throughout my school years empowered me to never think twice about asking for what I needed. The mentality of motivation and self-image can be crucial in the trajectory of your college experience. Do you believe you deserve to have equal access, education and success in college? YES! You do! I am here for you, every step of the way.

Emaill me at guardiansofhope90@gmail.com to schedule a complimentary conversation.
Guardians of Hope

https://guardiansofhopeus.wordpress.com/

Ambassadors of Hope

Announcement! ‼️Guardians of Hope presents: Ambassadors of Hope!
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If you are looking for support, direction and an individualized plan of action to identify and pursue aspirations, Ambassadors of Hope is here for you! Regardless of where you are with physical, mental, emotional health and abilities, we can connect to plant seeds for life. We specialize in partnering with those with chronic illness and disabilities for:

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•Health Advocacy

•Life Enjoyment 

•Career Development 

•Education and Advocacy

•Academic Ambassador: support in navigating college with illness and disability.
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Start 2019 with a champion to nurture, support and partner with you to create a more fulfilling Life. You can do it! To schedule a complimentary conversation beginning January 5, 2019 through February 15, please email me guardiansofhope90@gmail.com Spaces are limited! For more information, qualifications and my bio, please send me a message or email. You can also learn more on Instagram @guardiansofhopeinc . I’m looking forward to connecting with you!
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[My graduation from Chico State with a BA in Sociology, 2011.]

Do-Gooder Gone Bad

Discernment. This is a skill I have found to be crucial in navigating life with chronic illness and disability. I’ve come across many organizations and businesses that are exploiting the very populations they claim to serve. Despite benevolent mission statements and semantics of “doing good,” advocating on our behalf and otherwise appearing to provide support, there are often clues that something is not right. Our safety, integrity and well-being necessitates proactive, critical assessment. Don’t be afraid to say no or decline to participate if and when something seems questionable. Belonging to a PERCEIVED vulnerable population can put us at risk, but it doesn’t have to. Think for yourself and trust any apprehension you have. You’re worth it!

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!

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.