By the age of seven, I had my spiel committed to memory like a seasoned politician. At the beginning of each school year, I would politely educate my pupils about the nature of my disability. I was cognizant to provide only pertinent information, not an excess of fear- inducing data. Even at this age, with my sun-drenched hair sprouting from the top of my head, I knew what I was saying was significant. Significant not only in universal context of the topic, but also in the weight it bore on my personal well-being. Would my classmates accept me?
Though concealed was my motive to detour any teasing and tears, the macro level threads of awareness I was sewing entered my mind. It had already become intimidatingly apparent to me that whatever alternative views–beliefs that did not criminalize me for having a disability–I wished others cultivated, were going to have to be planted by me.
“Even though I walk and talk differently than you do, I am the same as you are.” I can still recall the words I imparted to my peers, teachers, and adults revolving around my world. “I am not contagious, it is safe for you to be my friend.”
In myriad contexts, with varying diction, I am still tossing out these reassurances like shimmering copper into a wishing well. I am asking others to erase the dangerous indoctrinations of their youth about others with disabilities, and to embrace diversity, recognize shared humanity, and reach out with respect.
Why should you care?
Inevitably, you or somebody you love will develop a disability. This is a statistical fact. With equal rights and access declining daily, the best thing we can do is learn to support one another. Conversations about navigating interactions with intention and undiscriminating respect are more imperative than ever.
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. In my example below, I participated in a normative behavior, seemingly overcoming my limitations, for the sake of conformity and appearing normal. In other words, I sucked it up and put on a happy, heroic face for the benefit of the healthy, who, in turn, demonstrated their approval because I was affirming their privilege. Make sense?
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.
My inquisitive mind was piqued by this pensive comment made on my post I’m Not Your Poster Child. Danny illuminated the topic of identity and the influence socialization plays in how we identify ourselves and which identities assume prominence for us. I have been fascinated with this concept throughout my life, exploring it informally as a child and more formally in the academic environment throughout my undergraduate career. For my undergraduate honors thesis, I developed a research project for which I interviewed individuals with physical disabilities. My research question aimed to understand how the individuals believed their socialization with the label of disability impacted their romantic relationships and sexual identity. The results were fascinating, to say the least! That, however, is another topic on which I could write a book, and nearly did.
Today I invite you to consider the questions posed by Danny. Please comment below and let me know, in rank order, what five characteristics do you use to identify yourself? Thank you in advance for participating!
Thank you to Danny for inspiring this conversation. You can visit his blog here:
Danny W. Sobriety blog – 21 years sober still figuring things out