Type of Discrimination . | Lived Experience . |
---|---|
Permissive racism | Nurse Sara (not her real name) is young and remarkably tall. I take a step back, slightly straining my neck to meet her gaze. She looks just beyond me though, her focus instead a calculated scan of the house. She’s new here—to our home as a potential caregiver, as well as to the nursing profession. Children like ours, the ones with complex medical histories, need lots of orientation. They’re tricky. The best way to make accurate assessments is to respect and learn from the lived experience of the people who have been the constants in their wildly unpredictable lives. Our home is nurse Sara’s first job. Here I am, attempting to go over essential parts of Josh’s medical history, the nuances of his behaviors that must inform his most basic assessments and care—and nurse Sara is not at all interested. “Listen,” she says, with the commanding and familiar air of putting me in my place, “I’m the nurse here, and you’re just the mom.” I call the agency to express concern; this sort of attitude among home care nurses almost always ends in an unplanned hospitalization. The agency defends nurse Sara’s indiscretion. Interruption in care and reimbursement dollars is sometimes a far greater evil than the skewed dynamic of being disrespected and diminished in one’s own home. “She’s from a small town, and she’s not used to people like you,” the coordinator says. “Like us? Suburbanites?” “Um, no.” “Military families?” “Black people. She’s just not used to being around Black people. It makes her uncomfortable.” They ask that I be patient, teach her, allow her to allay any fears. But I am emotionally exhausted after years of various versions of the same scenarios. This is my house. My safe place. Nurse Sara is not invited back. – D.H. |
Ableist thinking and ableist treatment | “You can’t fix those kids. What’s the point?” We were in our third year of medical school, but my classmate had already learned an unspoken rule of healthcare. I’d told him that I intended to go into pediatric neurology, that I wanted to work with disabled children, those with the highest needs and the most limited access, and he scoffed at me. “You can’t do anything,” he'd said. “You can’t fix genetic conditions or brain malformations, or intellectual disabilities, so why even try?” The 2 of us had just a few months of clinical experience under our belts and yet that had been time enough for my classmate to internalize ableist ideas about disability and quality of life. He already saw disabilities and chronic illnesses as problems to be fixed rather than seeing disabled and chronically ill patients as people in need of support and high-quality care. Unfortunately, that kind of thinking is more common in medicine than not. It’s woven into training curricula, reinforced through biased texts and journal articles, evidenced by the way that we provide care. Individual and systemic discrimination working together to negatively affect children’s health. I quickly learned that their disabilities weren’t the problem. Not the biggest problem anyway. I sat down with 1 patient after another, asked about their illnesses during follow up appointments, admitted them to the inpatient units, transferred them, and got them ready to go home. Their symptoms may have been different but so many of their stories were the same. Their autism wasn’t the problem. It was the fact that they couldn’t get accommodations at school without getting costly neuropsychological testing to prove that they needed them. Or their cerebral palsy wasn’t the issue; it was that their mobility devices weren’t covered by insurance. – D.C. |
Demonstrates ableism through unwillingness to say the word disability and portraying disability as a tragedy | “The results have come back, Mrs. Harris. The blood from the hemorrhage your son experienced at birth has resorbed into the brain. There was just so much of it, and it has eaten away at the intact tissue.” The other parents stare at me, expressions marked with pity—and relief that this bearer of grim news has not come for any of their children. I try hurriedly to arrange jangled thoughts into proper questions, searching for a bit of hope to break through the heaviness this man brings. The doctor places a gentle hand on the damp cuff of my gown, then proceeds to cut into my heart, like surgeons often do, but with indelible, scarring words, announced in front of this curious crowd of common strangers. “I’m afraid the prognosis is poor, Mrs. Harris. Your boy will most certainly be severely, profoundly…umm...I’m so sorry.” For your loss… I think he wants to say, but his words drop into a vacuous silence as he lets go of my arm and walks away. – D.H. |
Demonstrates the need for culturally responsive care and respect for autonomy | As I savor those first moments snuggled into position on the sofa, anxious to discover Josh’s new baby’s scent, away from the sterile smells of the hospital, nurse David (not his real name) says, “I should take him now, really. He really needs to get hooked back up to everything,” he says as he walks away with my baby. “If you have any questions, I’m here for a 12-hour shift. Go get some rest.” Nurse David seems to stomp on boundaries that no one has established. Everything about us is different. Our values. Our safe space. Our communication styles. One day, nurse David bursts suddenly through the doorway of our bedroom—an assumed restricted zone—as I’m dressing. He shrugs away my obvious shock and embarrassment. “Don’t worry,” he says. “I’m a nurse. You don’t have anything I haven’t seen before.” I feel as though I am sacrificing my agency as a mother to keep my child at home, and the agency of the privacy of my body to assimilate to this strange caregiver. Eventually, he dissolves into a long trail of homecare nurses who become unwitting players in a remarkable game of sacrifice, trade-offs, and the gradual, painful loss of our unique culture as a family. I learn to keep peace and get more nursing hours by accommodating a diversity of personalities, values, and traditions—at the expense of our own. Because this life is unfamiliar to me, and my role within the system that supports it remains unclear, bit by bit, shift after shift, I become a stranger in my own home. –D.H. |
Type of Discrimination . | Lived Experience . |
---|---|
Permissive racism | Nurse Sara (not her real name) is young and remarkably tall. I take a step back, slightly straining my neck to meet her gaze. She looks just beyond me though, her focus instead a calculated scan of the house. She’s new here—to our home as a potential caregiver, as well as to the nursing profession. Children like ours, the ones with complex medical histories, need lots of orientation. They’re tricky. The best way to make accurate assessments is to respect and learn from the lived experience of the people who have been the constants in their wildly unpredictable lives. Our home is nurse Sara’s first job. Here I am, attempting to go over essential parts of Josh’s medical history, the nuances of his behaviors that must inform his most basic assessments and care—and nurse Sara is not at all interested. “Listen,” she says, with the commanding and familiar air of putting me in my place, “I’m the nurse here, and you’re just the mom.” I call the agency to express concern; this sort of attitude among home care nurses almost always ends in an unplanned hospitalization. The agency defends nurse Sara’s indiscretion. Interruption in care and reimbursement dollars is sometimes a far greater evil than the skewed dynamic of being disrespected and diminished in one’s own home. “She’s from a small town, and she’s not used to people like you,” the coordinator says. “Like us? Suburbanites?” “Um, no.” “Military families?” “Black people. She’s just not used to being around Black people. It makes her uncomfortable.” They ask that I be patient, teach her, allow her to allay any fears. But I am emotionally exhausted after years of various versions of the same scenarios. This is my house. My safe place. Nurse Sara is not invited back. – D.H. |
Ableist thinking and ableist treatment | “You can’t fix those kids. What’s the point?” We were in our third year of medical school, but my classmate had already learned an unspoken rule of healthcare. I’d told him that I intended to go into pediatric neurology, that I wanted to work with disabled children, those with the highest needs and the most limited access, and he scoffed at me. “You can’t do anything,” he'd said. “You can’t fix genetic conditions or brain malformations, or intellectual disabilities, so why even try?” The 2 of us had just a few months of clinical experience under our belts and yet that had been time enough for my classmate to internalize ableist ideas about disability and quality of life. He already saw disabilities and chronic illnesses as problems to be fixed rather than seeing disabled and chronically ill patients as people in need of support and high-quality care. Unfortunately, that kind of thinking is more common in medicine than not. It’s woven into training curricula, reinforced through biased texts and journal articles, evidenced by the way that we provide care. Individual and systemic discrimination working together to negatively affect children’s health. I quickly learned that their disabilities weren’t the problem. Not the biggest problem anyway. I sat down with 1 patient after another, asked about their illnesses during follow up appointments, admitted them to the inpatient units, transferred them, and got them ready to go home. Their symptoms may have been different but so many of their stories were the same. Their autism wasn’t the problem. It was the fact that they couldn’t get accommodations at school without getting costly neuropsychological testing to prove that they needed them. Or their cerebral palsy wasn’t the issue; it was that their mobility devices weren’t covered by insurance. – D.C. |
Demonstrates ableism through unwillingness to say the word disability and portraying disability as a tragedy | “The results have come back, Mrs. Harris. The blood from the hemorrhage your son experienced at birth has resorbed into the brain. There was just so much of it, and it has eaten away at the intact tissue.” The other parents stare at me, expressions marked with pity—and relief that this bearer of grim news has not come for any of their children. I try hurriedly to arrange jangled thoughts into proper questions, searching for a bit of hope to break through the heaviness this man brings. The doctor places a gentle hand on the damp cuff of my gown, then proceeds to cut into my heart, like surgeons often do, but with indelible, scarring words, announced in front of this curious crowd of common strangers. “I’m afraid the prognosis is poor, Mrs. Harris. Your boy will most certainly be severely, profoundly…umm...I’m so sorry.” For your loss… I think he wants to say, but his words drop into a vacuous silence as he lets go of my arm and walks away. – D.H. |
Demonstrates the need for culturally responsive care and respect for autonomy | As I savor those first moments snuggled into position on the sofa, anxious to discover Josh’s new baby’s scent, away from the sterile smells of the hospital, nurse David (not his real name) says, “I should take him now, really. He really needs to get hooked back up to everything,” he says as he walks away with my baby. “If you have any questions, I’m here for a 12-hour shift. Go get some rest.” Nurse David seems to stomp on boundaries that no one has established. Everything about us is different. Our values. Our safe space. Our communication styles. One day, nurse David bursts suddenly through the doorway of our bedroom—an assumed restricted zone—as I’m dressing. He shrugs away my obvious shock and embarrassment. “Don’t worry,” he says. “I’m a nurse. You don’t have anything I haven’t seen before.” I feel as though I am sacrificing my agency as a mother to keep my child at home, and the agency of the privacy of my body to assimilate to this strange caregiver. Eventually, he dissolves into a long trail of homecare nurses who become unwitting players in a remarkable game of sacrifice, trade-offs, and the gradual, painful loss of our unique culture as a family. I learn to keep peace and get more nursing hours by accommodating a diversity of personalities, values, and traditions—at the expense of our own. Because this life is unfamiliar to me, and my role within the system that supports it remains unclear, bit by bit, shift after shift, I become a stranger in my own home. –D.H. |