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Are You Aware? Waves of Change
This is part VIII in our Awareness Wednesday series on disability. Read the other posts in the series here. I sit down at my desk, grab my laptop, and open a new document. I look around my desk at the chaos that lies in front of me. There’s a stack of booklets and research papers and policy recommendations from states around the country. Lots of sticky notes, dry erase markers, my detailed planner, and my long to-do list. My dry erase board is filled with scribbled notes and flowcharts about contact tracing the spread of COVID-19 in “hard to reach” communities. I see a stack of reports from Utah’s Medicaid trends…
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Are You Aware? Expanding Perspectives
This is part VII in our Awareness Wednesday series on disability. Read the other posts in the series here. I have a host of medical diagnoses — a list of acronyms that likely won’t mean anything to most people. Some include POTS, MCAD, probable EDS, IBS, GERD, ME, mito, hypokPP, DSPD, PTSD, chiari, hyperPT… honestly, I don’t keep a running tally anywhere, so it’s hard to keep track of all of them. In plain English, I have a glitchy nervous system, low stamina, sagging brain, gimp leg, migraines, PTSD, allergies, and other conditions, all very complicated, most interconnected, few treatable, and most beyond the knowledge of the average doctor. I also…
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Are You Aware? An Effort to Hear
This is part VI in our Awareness Wednesday series on disability. Read the other posts in the series here. As the daughter and sister of physicians on the COVID-19 front lines, I’m a dutiful adherent of social distancing and mask wearing these days. But, as a person with total hearing loss, these strategies are hard. Social distancing means sound is farther from me. Mask wearing makes speechreading nearly impossible and further muffles the sound. As Roberta Cordano, the president of Gallaudet University, said in a recent New York Times article entitled “For the Deaf, Social Distancing Can Mean Social Isolation,” “The ‘two adults, six feet apart’ standard carries its own inherent…
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Are You Aware? Five Things You Can Do Right Now to Fight Ableism
This is part V in our Awareness Wednesday series on disability. Read the other posts in the series here. 1. Learn about the history of disability. In order to understand current experiences of disability, we need some information about how disability has been experienced. Because disability history is not covered in schools, most people have very little (if any) exposure to it, leaving it up to disabled people to do much of the educating on this topic. Given that disabled people have been around just as long as anybody else, it’s impossible for me to recommend resources that cover all of disability history. But I’ll recommend three resources that I believe…
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Are You Aware? How to Be an Advocate
This is part IV in our Awareness Wednesday series on disability. Read the other posts in the series here. My third child, a daughter named Marisa, was born in 1991. The pregnancy and delivery went well, but after she was born, we began to see behavior that was much different than our first two children. She would tantrum (screaming at the top of her lungs) frequently as a baby, and a toddler. Because of the intensity of her crying, I kept thinking she must be ill. So she was taken to many doctors and was poked and prodded, so very many times. All her medical tests came back normal. But she…
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Are You Aware? Life From My Point of View
This is part III in our Awareness Wednesday series on disability. Read the other posts in the series here. It is 2:30 p.m. and I’m sitting on the steps in front of the school waiting for the taxi that will take me, Connie, and Billy home. I’m working on my homework, which is reading. It is fun, and I’m learning more and more. I’m recovering from my first grade year of school in the U.S., where the teacher had no clue how to teach low-vision children. I’m now in a new school and must be transported to another town. The taxi arrives: It’s the white van and that means Ray. Ray…
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Are You Aware? Five Lessons from Raising an Autistic Child
This is part II in our Awareness Wednesday series on disability. Read the other posts in the series here. Like all parents, my world changed forever when I had my first son in 2002. Like a growing number of parents, my world changed forever yet again when I discovered, in 2004, that my son was autistic. Navigating the world of public education, private insurance, and social interaction as the mother of an autistic child for the past 15 years has been a challenging experience, one that has taught me several lessons with respect to how our system works in practice. I share five of these lessons below. Although much of what…
