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.

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