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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? 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…
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Are You Aware? Coming to an Understanding
This is part I in our Awareness Wednesday series on disability. Read the other posts in the series here. A few weeks ago my son returned from his mission in Argentina due to the coronavirus. While he waits for reassignment, we have enjoyed having him home and hearing about his experiences. He was in Argentina for six months. It was just enough time to learn Spanish and become moderately fluent. He spoke about how homesick he was throughout those first weeks and months. It was incredibly hard to not understand the language. He is a smart kid who is very gifted with words. The inability to share his thoughts and participate…
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Are You Aware? Who Will Survive?
This is part V in our “battlefronts” Awareness Wednesday series. Read the other posts in the series here. So many of us are home with our families and are relatively safe and going out infrequently. Imagine if the situation were different. Imagine trying to survive in this time without a home. Many homeless people are afraid to go into shelters at this time. They fear the close quarters and the infection rates in the shelters. Earlier this month 94 men tested positive at a homeless shelter in Salt Lake City. Recently in the Boston area all residents and staff at certain homeless shelters were tested for COVID-19. At one of these…
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Are You Aware? Front Lines
This is part IV in our “battlefronts” Awareness Wednesday series. Read the other posts in the series here. My favorite toy as a 4-year-old was a little black doctor’s bag. It included an orange reflex hammer and a yellow-and-blue shot and stethoscope. I took a first-aid course my freshman year in high school and was chosen as one of six first responders for the junior high. Our advisor would call us out of class, then we’d triage the situation and get started on taking care of our patient. We’d fill our advisor in once he was able to get his class situated and come join us. We also served as the…
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Are You Aware? Homefront — In Our Response Lies Our Growth and Our Freedom
This is part II in our “battlefronts” Awareness Wednesday series. Read the other posts in the series here. According to Maslow, our three most important needs are physical need, for things such as air, food, and water; need for safety, such as feeling safe from danger, pain, or an uncertain future; and love and/or belonging, which includes the need to bond, feel loved, and have strong attachments with others. All these important needs are challenged by our present circumstances, as we each fight our individual battles on the homefront to help contain this coronavirus. In this war, many of the most important contributions will be made on the homefront. Each of…
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Are You Aware? We Are All Enlisted
This is part I in our “battlefronts” Awareness Wednesday series. Read the other posts in the series here. I have been thinking about the words “We are all enlisted till the conflict is o’er.” As a pacifist, I am generally not a big fan of battle-themed songs, despite their stirring and jaunty tunes. But this one feels particularly relevant to the lives we are leading today, and as I have thought about the message, I can appreciate the value of metaphors that allow us to identify and “fight” the battles in our lives. If you are like me, you have been worried about a lot of people, and situations beyond our…
