The quote that follows continues: "... It seems the more permission we give ourselves and each other to have all the feelings and questions--without offering tidy answers to shunt the process--the more empowering it'll feel to define our own meaning, in our own time, as best we care to."
#autoimmunepaleo SPECIAL INTERVIEW // TERI DILLION
This is the second post in an interview series with @teri.dillion, author of No Pressure, No Diamonds. Teri has ALS and types using technology that tracks her eyes (#incredible), and we are running a series of posts featuring her insights into life, healing, and meaning under the hashtag #nopressurenodiamondsbook.
👉QUESTION: It is tempting to give tidy answers in the form of advice or seek tidy answers as a way to make sense of disease or gain control. What is the impact of getting sucked into the pursuit for tidy answers? What is the alternative opportunity?
👉Teri answer: “You named it: control. I think it’s natural, when something powerful and disorienting starts taking over our lives (like chronic/complex illness), for us to try to orient towards an explanation that comforts us. We all would like to believe if we do everything “right,” we’ll always prevail with the upper hand in our fate. Capitalism and advertising would have us believe there’s always an answer to what ails us, if only we make the necessary investment. But of course life doesn’t reliably offer tidy resolutions based on simple transactions; it merely continues to unfold in greater and greater complexity. I believe it’s ultimately up to us to mine it’s lessons, no matter the challenge or conventional success of the eventual outcome.
One important lesson of illness is humility, since it begs (and sometimes demands) us to slow down, turn inward, and listen. In heeding that call, we’re afforded an opportunity to learn of ourselves on a deeper level; our rhythms, needs, longings, hurts, and hopefully, our own resources. If we allow for it, we can become students of the power of impermanence, mystery, and grace, and we can learn to engage our relationships in a new, more life-affirming way. While this process is rarely tidy, it ultimately invites us to locate and define our own empowerment---and indeed a faith in our own vitality, no matter our physical state---that we’d never have found otherwise.”
One of the interesting things about acquiring a disability in adulthood is seeing how differently strangers treat you.
Once the muscles in my throat and vocal chords lost enough oomph to form clear words, most strangers started talking to me in a loud voice, assuming I couldn't hear, or with simple language, assuming I couldn't understand, or think. Some would not even bother talking to me at all; a certain percentage would ignore my personhood completely and instead speak about me in the third person to whatever able-bodied person accompanied me.
Other strangers assumed my body was fair game and boundaryless, and would suddenly reach out to stroke my face, pat the top of my head, or even suddenly lean in for an unexpected kiss on the lips. Can you imagine? Strangers! This is not something that strangers ever did upon first meeting me prior to my using a wheelchair---it's as if I lost my status and subjectivity as an adult.
To my surprise, I've found this to be the case with healthcare providers just as often. Sometimes they automatically yell, or patronize. Prejudice and confusion regarding physical disability runs deep, which is why we all would benefit from better education which helps us not infantilize each other. (FWIW, I most definitely could have done the same to others once upon a time---sans kissing.)
But this peculiar phenomenon is not unique to me, of course. This is a large, enduring trend with deep and ugly history in American society, where people with disabilities are feared, misunderstood, abused, or outright ignored in our desires to live a life in the public sphere with dignity. As a minority group who encompass 20% of the population---which you wouldn't know by watching media, where we are represented as 2% of the population, usually by able-bodied actors or models--- those of us with disabilities have a long way to go in securing visibility and representation.
This article, written by (my hero, badass) disability rights activist Judith Heumann is worth the read. Also, Netflix's recent Crip Camp documentary which features her work is excellent and worth watching