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Part 2 in the “Self-Care in the Time of Liars” Series
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When the cochineal scale insect (Dactylopius coccus) invades, it looks like harmless white fluff, but really, it’s mission is to sink its mouthparts into a juicy nopal cactus pad and slowly suck out the life from the inside until it withers and dies.
The desert is a place of resourcefulness and resilience. One doesn’t last long without these skills. Historically this bug was brushed off the cacti, collected, dried and mashed to dye fabric a deep, beautiful red. Without help from people or other creatures intervening to save the cacti, the nopal is left to come up with a defense of its own.
With the passage of Arizona’s discriminatory Americans with Disabilities Act notification bill (SB 1406) and then only a few weeks later, with the House passing the American Health Care Act (AHCA), the replacement for the Affordable Care Act or Obamacare, I have been struggling with the feeling of defeat. It’s hard not to notice how both bills happened in an oddly similar way. The first and original versions were heavily organized against and defeated, only to be brought back in a deceptive and sneaky way to pass.
I know I have every right to be angry, disabled people are under attack. I know that I was proactive even if this activism didn’t stop the passage of these bills. At the state level, what lingers are the representatives who looked me in the eye and promised to not vote for it and then did. At the national level, the House representative told the Disability community not to worry, that healthcare repeal wasn’t moving forward, and then voted against us, even leading the rally to vote by shouting, “Let’s get this f-king thing done!” Or every business owner I’ve ever emailed or talked to who agrees disability access is an issue, promises to fix it and then nothing changes. Whatever their reasoning, I am left feeling like a nopal cactus pad, trying to grow into the community I live in while the lies suck out my fight. Lies, like insects, look harmless until one watches what they can do.
One insidious way these lies play out is how diversity is framed as a threat to nondisabled people in power. The lie that my body is a threat, drains me, makes me feel confused, makes me mistakenly think I somehow failed to convince them or failed to provide the best examples. That somehow if I had just done more, then things could’ve been different.
This lie sits like a weight on my heart sucking the life force out of my motivation, joy and tenacity. The reality is, despite my and others best efforts, we can’t control what happens. Our lives are affected and we are forced to deal with the consequences.
I want to turn away and hide. Retreat into myself and the safe places I’ve carved out to survive.
So, I honor that reaction and I practice self-care by being alone. Being in my own solitude I focus on doing small things which bring me joy and are in my control, which allows me to detach from this helplessness that feels all consuming. I give myself time to recover.
There’s no know defense mechanism for the nopal cactus to combat the cochineal scale insect yet, in my yard I observed one pad without insects present. The side of the pad was peeling like our skin does after a bad sunburn. I wondered if it was sloughing off parts in order to shed the layers where the bug had latched on.
As an activist and artist, I can’t withdraw forever. After these experiences where I’m ignored and discriminated against, I find myself internalizing a feeling of forced obedience. If I scrape these lies off my body to transform them into something I can show the rest of the world, they can dye the fabric of my resistance.
At a friend’s graduation, I stumble over answering the question, “How are you?” The helplessness and anger smother out all the usual polite answers I have at the ready and I worry if spoken out loud this helplessness and anger will suck up all the air putting a damper on the joy of the occasion.
After the ceremony, I join friends and I risk describing how I’m actually doing. I feel myself slowly brushing off the lies latched onto my body. I describe how helpless I feel. I watch their faces shift into listening. No one knows what to say and yet one by one they brush off the lies they have been carrying around and somehow, they relate to pieces of my struggle. Slowly through conversation, truth and laughter I recognize the crushing of lies creating a brilliant color dyeing a fabric which I wrap around my fragile heart. Truth stains proof of my resistance.
This resistance doesn’t feel like plans or action, more like shedding. Shedding the layers where holes poked through my self-worth and stamina. Shedding to show up in the sun once again.
Having my truth witnessed transforms the lies, loosens their grip, making a cohesive, color which is soft and energized. By witnessing other’s truths, often unrelated to mine and in the midst of being realized, together they create an expanding stain of dye. The preparation for a fabric of resistance to be made together.
Fortified by truth I am slowly, achingly slowly, moving through the hurt. I am breathing into my anger. I am examining the color of resistance which is left after the transformation of lies.
Read Part 1 Self-Care in the Time of Liars Series
(c) Naomi Ortiz 2017
(c) Naomi Ortiz 2017
There’s this bug, I jokingly call the “vampire bug” that looks like white fluff stuck to the side of a nopal cactus pad. Its official name is the cochineal scale insect (Dactylopius coccus). Once on the cactus pad, this bug covers itself with a thick waxy substance that looks like harmless white fluff as it sticks its mouthparts into the nopal and sucks out the juices until the pad shrivels up and falls off from the stock of cacti. It often takes an intervention to save the cacti, if you notice in time.
Locally, disability activists have been fighting for months to defeat a bill sponsored by the business lobby (the Chamber of Commerce). In a state where it is hard to find a lawyer willing to take an access case against a business (because the federal law doesn’t allow damages) one lawyer had found a way to make money under state law through suing hundreds of businesses in one metro area over small infractions and charging them large lawyer fees. This is the kind of thing you hope never happens in your town because it creates an opportunity for those with power to point out this one example and push through radical adjustments legislating discrimination.
The way the federal Americans with Disabilities Act (ADA) and the state version was written, if cities do not enforce the building codes then disabled individuals have to sue businesses in order to force them to comply with the law. The business lobby proposed a change to the state law requiring disabled people to provide notice to businesses that are inaccessible and give them months to fix the problem.
This may sound reasonable until you consider the federal ADA law has been around for 26 years (and the state version over 20 years). Oftentimes the inaccessibility of the business (like a hospital or daycare center) can be dangerous for disabled people, not to mention, the discrimination of not being able to access a business offering services to anyone in the community.
Ugly laws, once common across the United States to keep disabled people out of business establishments, are now illegal. However, now we have businesses which are built and function in ways that create barriers to us even entering. Some people think it’s no big deal if a disabled person can’t go into one business. The problem is it’s not just one business it's actually hundreds of businesses and as a disabled person I end up having only a few places which are accessible where I can get a cup of coffee, go see a concert, drop off and pick up a kid from child care, etc. These limitations deeply impact my daily life and who I get to connect to within the community. We were fighting this sapping of our civil rights.
The business community agreed to work with the disability community in order to “compromise” (which really means disabled people give rights away in order to make a bill less discriminatory than it can be). The disability community offered several suggestions to specifically address the tactics this one lawyer had used, but the business lobby ignored addressing the real issue. The disability community tried to point out that safeguards had worked, the state attorney general had gotten involved and had condensed multiple actions into one suit and a judge had dismissed a great deal of the cases. The disability community tried to negotiate the best they could to limit the amount of rights the bill would strip. A compromise bill was drafted and proposed but went nowhere.
The double-dealing business lobby instead proposed and pushed for a harsher, all-inclusive bill. The disability community quickly shifted to organize around this discriminatory law, SB 1198 and through meetings with our local representatives, speaking at town hall meetings and testifying at the state house, we were able to kill the bill in committee.
Then the deceitful business lobby took a completely unrelated bill, SB 1406 that had made it through committee pulled out all the language and inserted the notification and waiting period which the disability community had originally defeated, essentially replacing one bill with another (this is called a “striker” bill). It sailed through the state House and Senate. State legislators lied to the disability community saying they would not vote for the bill, flipped and voted for it. The Governor signed it into law and the next day a federal version was proposed in the House, HR 620.
The disability community in Arizona joins disability communities in every state where nondisabled people think they understand what disability means and what our life experience is like. Nondisabled people often assume disabled people are much more included in community life then we actually are.
For me, disability activism isn’t just about changing other people’s attitudes about disability or explaining our value, it’s actually about asking people to address their own fear of disability. Disability activism is asking nondisabled people to tolerate and make changes to include, what they most want to ignore.
One time I was with a nondisabled woman of color who ran an organization for parents of kids with disabilities. We had a conversation with a man I knew who had a trach, a (for him) permanent surgical opening at the base of his throat. Afterwards, she turned to me and fearfully scratching at her throat whispered, “What happened to him?” She really didn’t want to know about what happened to him (and it was none of her business) she really wanted to know if it could happen to her.
People’s intense and innate fear of disability, of being vulnerable, sets people up to pity disabled people wanting to create as much separation as they can between their perceived body and life and the disabled persons. They may offer support or participate in charity in some way, but their fear stops them from empathizing or understanding disability rights as part of civil rights.
Disabled people cite statistics all the time about our 70+ percent unemployment rate and how little accessible housing exists across the country. But when it comes to a face-to-face conversation with a nondisabled person in power, the question really becomes, “Do you value me?” Or, “Do you value equality enough to want me to be able to go where you go, eat where you eat, or for our kids to attend daycare together?”
In my yard, when the first patch of fuzzy white fluff appeared on a nopal pad, I barely noticed. It looked harmless. For a while nothing looked like it was changing until one day I realized several pads were wilted and dying on the ground having been sucked dry.
These laws which give businesses one more discriminatory loophole to exclude me and slowly drain my rights away. My right to be part of community is essentially my lifeblood. The way I find nourishment, food, clothes, shelter, friends and feel useful. The effects of lying has been personal and from afar. But now it’s in my own yard.
How long until the lies come for you?
I will join others in the on-going fight but I also know self-care must exist in every phase of the journey. How do you practice self-care when dealing with discrimination? Share your tips and ideas in the comments. In the next post, I will share a few of the tips and tactics that I’ve learned.
Part 1 in the “Self-Care in the Time of Liars” Series
How people in leadership act sets the tone for those they are leading. It’s been 75 days since Trump took office and his decision to constantly lie is starting to affect my town over two thousand miles away, creating a deeper sense of distrust which is showing up in subtle ways.
Living in a world with false leadership is like living in a world of constantly shifting sand. What was a mountain yesterday is now a flat low-land. Where we had laid down to sleep the night before, our backs protected by the sloping dune, is now exposed in all directions.
Lately, a heavy sense of distrust is shadowing people in community spaces. In the public spaces that I access frequently, people react to each other in impatient and explosive ways. People are in their fear. Near me at my local public pool, two older women (both in their late 60s) get into a physical fight because they are in each other’s way. At a local coffee shop, an older man insists that I not laugh so loudly, getting very angry and arguing with me when I refuse. Shifting sands become like shifting blame.
|Photo Credit: National Park Service|
As a kid, I remember driving through the Imperial Sand Dunes NationalRecreation Area on a car trip to visit family in California. The dunes were strikingly beautiful as the sun crested over the horizon. The wind was still and the sky was clear. The dunes appeared statuesque, firm and true. On the way home, it was early afternoon as we crossed back through the sand dunes area and the wind was raging. Sand was flying through the air so fast that it created almost like a dense fog which no light could travel through. Everything was violently shifting and changing and I had no idea when the wind settled how the landscape would appear.
Lying creates harm. One element of this harm is feeling like there’s no solid ground on which to build our day-to-day lives, let alone to build resistance. We become focused on what we can control, focusing perhaps on the sand right below our body, afraid to look up and see which way the landscape has shifted today. Many of us don’t have the skills we need to handle these dramatic and increasing shifts. We react by scrambling for what we can control, functioning from a place of “give me what’s mine.” At the same time, exerting even more energy and patience dealing with and/or resisting these scarcity-based or entitled reactions from others.
In the past 75 days, I’ve seen a change. I see changes in people’s bodies, in the way they fearfully go after what they need with fervor and a disregard for others. The need for control over irritations that they may have tolerated in the past. Folks acting especially spacey and/or passive.
I am reflecting, asking myself if the fear I feel is shaped by the lying of our national leadership? My friends are calling me more lately, shaken, fearful, traumatized in a bigger way by the things happening in their life. They fearfully wonder how the shifting of the national landscape will impact these smaller life changes.
Living in the time of liars is much like living in a constant sandstorm. I don’t know from which direction the winds will rise today, but when they do, I am stuck where I am, unable to predict how things will shift, where solid ground will be.
I find myself angry after listening to the news at night and unable to sleep… In the desert, we only have one natural water source, what will it mean if Water Protections disappear? There’s already a wall on much of the Border, how will militarizing the Border further affect animals, waterways, families, my community and other communities? So many friends are living in fear from the increase in deportations and the increased ICE presence makes our whole community feel less safe.…These anxious thoughts and questions fill my mind as I go to sleep -- instead of -- how do I help my friend who’s going to be recovering from surgery? I wonder how my neighbor is doing? What ideas or questions am I excited about?
Living bombarded by lies and in my fear about what will happen makes me highly attuned to the shifting dunes. I’m losing the gifts of truth. A solid gift that truth gives is that truth in itself creates connection, propels movement. Factual truths can connect to solutions. Through facts I can understand the picture of the problem which can be discussed, explored, broken down again and worked on. Intuitive truths connect to areas I’m working on, my own growth. Truth loudly shared over making dinner with friends creates a connection which ties us to a shared sense of understanding and often a way to move on. In the simplest sense, truth bonds me to myself and helps me feel connected to the world.
Part of self-care for me in this time is creating intentional ways I can connect with truth. When doing this, I like to stick to the small and simple things which my fantastically imaginative mind can’t pick apart. For example, the truth that sunlight feels good on my face. The truth that I can give my neighbor an authentic smile and wave. The truth that at this moment, my back feels sore and I need to stretch. I find myself going into nature more often needing reminders of simple truths I can observe. Today I noticed the bright pink blooms of the hedgehog cacti which are usually the first to bloom in a year. These all are truths I can attend to, validate and focus on.
Focusing on truths that are simple, reminds me what truth feels like – meaning what truth feels like in my body. Reminding my body through simple truths, what truth feels like, helps my body to also recognize larger and more complex truths. This is especially helpful when truth is obscured by a sandstorm of lies.
In this time of deceitful leadership, I need to be reminded of how people have survived in this kind of environment. I need to be reminded of how people compensate for the shifting dune landscape, for example, how people built floating roads of wood planks across the everchanging mounds. Animals evolved to develop ways to flow across, and with, the sand. Staying in the truth of the moment, the truth I can feel my body, allows me to stay connected to my environment, myself and to relationships that help support me over the long haul, surviving in this time of liars.
How do you stay connected to truth in this time? Share your answers with me in the comments.