Collision of Body and Lies

Nopal pads with fuzzy cotton-like white spots.
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.

Stock of Nopales cactus showing cochineal scale insect covering each part of the cacti.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?”

Nopales cactus pads in several stages of being drained, with many pads wilted and drained of fluid on the ground.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.

Surviving in the Liars' Sandstorm

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.  

Rolling tan colored dunes of different sizes and heights. Behind the dunes are snow capped mountains and a cloudy blue sky.
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.

Cultivating Community - Review of “What Matters: Reflections on Disability, Community and Love” a New Book by Janice Fialka

The Book Review below was first published on
Book Cover. Two people with brown hair and light skin smile facing forward. The title, What Matters: Reflections on Disability, Community and Love frame their faces.

Community connections can happen in any place, at any time. Recently I was on a strategy conference call and I mentioned the work I do around Disability justice. A young parent messaged me after the call wanting to know how he could best support his six-year-old disabled son. I had just finished reading, What Matters: Reflections on Disability, Community and Love by Janice Fialka and knew it was the perfect book to help him on this journey with his son.

Imaginative and honest What Matters builds upon a foundational essay from when Janice first learns of her son’s diagnosis and continues through almost 4 decades of growth and activism. Janice’s poetry and essays provide a heart-centered context to navigating and eventually advocating for a path of inclusion.

On this path towards inclusion, at one point Janice reflects, “We learned that as parents we have to advocate for and with Micah to truly integrate him into as many activities as possible… We learned that we can’t be silent and hope for the best... We learned that not all people will be on our side…” (Page 73)

Essays from the entire family provide a 360° perspective of Micah’s journey through school and out into the world. Micah’s sister shares lessons she’s learned through growing up with a disabled sibling. In Rich’s essay, Micah’s dad accurately states, “We knew that the ‘system’ would not provide most, if any security.” (Page 225) Micah speaks to this point in several essays and interviews where he describes building support systems to live the life he wants to lead. I wonder if one day the son of this young father could see Micah as a role model, not to be like, but in the sense of having and pursuing dreams?

How do we create community around families and disabled people to live interdependently in the world? How does this happen outside of or in partnership with systems of support? Through exploring friendship, working with professionals, developing a Circle of Friends as on-going structure of support, and connecting to disability community and pride, this book provides a lens to view one family’s journey to find the answers.

Building community is a nuanced endeavor. I’m excited for this young father to have a real life, tangible example of how one family created community to fill the systems’ gaps. I imagine this father meeting the professionals in his son’s life having a clear understanding of how his feelings and reactions aren’t unusual or his to bear alone. Even more importantly, I hope that after reading Janice’s advice to professionals, he may be better able to articulate what he and his son need.

Sometimes at the beginning, when everything is hazy, scary and unknown, all we need is a light to show a brightly and briefly a larger landscape of possibility. May What Matters be one lighthouse in this young father’s voyage.

To learn more about Janice Fialka, What Matters: Reflections on Disability, Community and Love” published by Inclusion Press and to order the book, visit: