If you erase all the wrong stuff, you'll have plenty of room - Blogging Agains Disablism 2015
My prior Blogging Against Disablism Day posts are (2006), (2007) (2008) , (2009), (2010), (2011), (2012), (2013) and (2014)
Happy 10th Anniversary to Blogging Against Ablism! I'm proud to be participating for my 10h consecutive year. And sad that we need to at all.
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My father used to talk about his high school Latin teacher, who only supplied his students with one sheet of paper for exams. When students asked for a second sheet of paper, the teacher would refuse, stating, “If you erase all the wrong stuff you’ll have plenty of room.”
This has always struck me as a misguided policy for Latin exams. Some students may choose to translate passages using more words than others, and of course, handwriting size can vary widely.
But lately I’ve been thinking about this phrase in my work to change the way health care providers are taught to think about disability.
In 2003 I entered medical school with several chronic conditions and disabilities of my own and a plan to specialize in the care of children with developmental disabilities. Therefore I kept my ears perked for any mention of disability dropped in lecture.
References were simultaneously plentiful and alarmingly few.
I still remember the lecture on geriatrics where the presenter mentioned that many of the principles she was about to discuss might apply to patients who were not elderly, such as a child with cerebral palsy. And she was right, they did. I also remember the gentleman who was brought in to speak to us about blindness, and the doctor who had been introducing his talk for years but struggled to find appropriate language to describe disability.
There was also a fair amount of curricular content centered on what I call the cause-cure-prevention perspective of disability. We indeed learned a fair bit about the causes of various conditions, along with information to help people not have those conditions anymore, or to have as few symptoms from those conditions as possible, or to not have had the condition in the first place. For example, we learned a lot about symptoms from having a spinal cord injured at various levels. We learned about emergency room treatment for people with spinal cord injuries to preserve as much nerve function as possible. We learned about various ways that retinas can develop problems leading to blindness. We learned about genetic conditions which are associated with intellectual disability, ranging from Down Syndrome to Fragile X syndrome to PKU.
There’s nothing inherently wrong about teaching these things to medical students, of course, although I believe that conceptual teaching about disability is ultimately more useful than teaching specific facts about specific disabilities. Consider the student who can parrot symptoms from a spinal cord injury at C8, but knows nothing about prevention of pressure ulcers in people who use wheelchairs for a variety of reasons, or how to order a wheelchair for a patient or even how to set the brakes on a wheelchair, who furthermore has never been taught anything about the cultural or civil rights aspects of disability. Which student is going to be of more use to more future patients? Specific, factual details can be looked up later as needed, whereas broader concepts and principles need to be taught and modeled repeatedly. Of course, they need to be taught and modeled by people who have already learned and internalized them, and such people are in short supply in medicine.
But what I remember most vividly were the moments of unchecked ableism, tiny little comments made by lecturers and heard by lecturees that went unnoticed as problems and sometimes unnoticed altogether. The term “imbecile” was used in a textbook revised weeks before our class began, and did
I mention that I entered medical school in 2003, not 1933? The term “miraculous” was used to describe cochlear implants 5 times in one year (every time the cochlea was mentioned) without any mention of their controversy in the Deaf community or in fact any mention of the existence of the Deaf community. A patient history noted that “the poor guy was confined to a wheelchair” and children with spina bifida were “an expensive and tragic health hazard.” Cerebral palsy, in turn, was “absolutely devastating.” Multiple times we were told, casually, that people with a certain degree of vision loss couldn’t “function.” We were exhorted not to memorize lists of medication as we were not “autistic children who were idiot savants.”
I complained. I complained politely to individual lecturers, in person or via e-mail. Occasionally, my concerns were heard by someone who took them to heart. More often I was told that I was being overly sensitive. I complained politely, then vehemently, to people in charge of curriculum, who also thought that I was taking these remarks too personally. I tried to advocate for improved education about disabilities and was told there simply wasn’t time in the curriculum.
Years passed. A decade. I have completed my training as a pediatrician specializing in the care of children with developmental disabilities. I’m still disabled, myself. I find some other health care professionals, some disabled and some not, who believe that health care trainees should be better taught about disability.
Over and over, they describe approaching administration, curriculum committees, colleagues, asking that disability be included. They point out, as I often do, that disability affects approximately 20% of people, so education on disability will be relevant to a minimum of 20% of patients in any branch of medicine, before factoring in any medical needs related to disability, of which there might be a few. We frame it as a cultural competency issue, a communication issue, a professionalism issue, a health-care disparity issue.
And over and over, they receive the same response: there isn’t time.
We have to cover all of anatomy, they are told. And all of pharmacology. And all of pathology. We cover disabilities in there, anyway, right? Like in pathology of the eye we talk about people becoming blind if we can’t stop it, and I know we cover Down Syndrome in genetics and schizophrenia in psych? We have to cover communication and professionalism, and these other groups are insisting we cover women’s health, and health care disparities for racial minority groups and then we just got a memo that we have to cover health for LGBT people. There isn’t time.
We offer suggestions. Perhaps, disability can be included in small ways in the curriculum you have already. If you are discussing communication with patients who do not speak English, include information on communication with Deaf patients. If you are giving your students a case to discuss about gallstones, give the hypothetical patient bipolar disorder instead of having “no previous medical history.” Include wheelchair-users in your group of “standardized patients” on whom your students practice interview and exam skills.
As I said earlier, teaching conceptually may be a helpful option. Instead of teaching about specific conditions as they relate to concepts in genetics or pathology or organ systems, consider reducing the amount of zebras (rare conditions) students are asked to commit to memory in favor of workshops clustered on a theme. I actually have a dream of a medical school unit on “conditions managed in part or whole by dietary interventions.” Students could learn about diabetes in the context of counting carbohydrates, celiac disease in the context of gluten-free and intestinal pathology, coronary heart disease in the context of the Mediterranean diet, Crohns in the context of a low-fiber diet and intractable seizure disorders in the context of the ketogenic diet. Actual patients could do some of the teaching.
Of course, conceptual teaching about disability is only possible if the teachers know how to teach it. They know a lot about eye pathology already. They would have to be taught about the accuracy or lack thereof of statements they may make about blindness. Students tend to believe what they’re told, so they can easily internalize negative attitudes about disability that are taught to them with the same conviction as the stages in fetal brain development.
Perhaps we should start by teaching the teachers what NOT to say. Fighting ablism isn’t only, or even mostly about a list of words to avoid, but it could be a quick way to prevent medical students from being exposed to them in their lectures. Nuances can come later, perhaps when this generation of medical students become the teachers in a few years.
And if all the negatives, the myths, the misconceptions taught about disability were simply removed? Just imagine how much space would miraculously open up in the curriculum. Why a minute here and a minute there might free up several precious hours!
Or, as my father’s Latin teacher was famous for saying, “If you erase all the wrong stuff, you’ll have plenty of room.”
Happy 10th Anniversary to Blogging Against Ablism! I'm proud to be participating for my 10h consecutive year. And sad that we need to at all.
--------------------------------------------------------------------------------------------------------
My father used to talk about his high school Latin teacher, who only supplied his students with one sheet of paper for exams. When students asked for a second sheet of paper, the teacher would refuse, stating, “If you erase all the wrong stuff you’ll have plenty of room.”
This has always struck me as a misguided policy for Latin exams. Some students may choose to translate passages using more words than others, and of course, handwriting size can vary widely.
But lately I’ve been thinking about this phrase in my work to change the way health care providers are taught to think about disability.
In 2003 I entered medical school with several chronic conditions and disabilities of my own and a plan to specialize in the care of children with developmental disabilities. Therefore I kept my ears perked for any mention of disability dropped in lecture.
References were simultaneously plentiful and alarmingly few.
I still remember the lecture on geriatrics where the presenter mentioned that many of the principles she was about to discuss might apply to patients who were not elderly, such as a child with cerebral palsy. And she was right, they did. I also remember the gentleman who was brought in to speak to us about blindness, and the doctor who had been introducing his talk for years but struggled to find appropriate language to describe disability.
There was also a fair amount of curricular content centered on what I call the cause-cure-prevention perspective of disability. We indeed learned a fair bit about the causes of various conditions, along with information to help people not have those conditions anymore, or to have as few symptoms from those conditions as possible, or to not have had the condition in the first place. For example, we learned a lot about symptoms from having a spinal cord injured at various levels. We learned about emergency room treatment for people with spinal cord injuries to preserve as much nerve function as possible. We learned about various ways that retinas can develop problems leading to blindness. We learned about genetic conditions which are associated with intellectual disability, ranging from Down Syndrome to Fragile X syndrome to PKU.
There’s nothing inherently wrong about teaching these things to medical students, of course, although I believe that conceptual teaching about disability is ultimately more useful than teaching specific facts about specific disabilities. Consider the student who can parrot symptoms from a spinal cord injury at C8, but knows nothing about prevention of pressure ulcers in people who use wheelchairs for a variety of reasons, or how to order a wheelchair for a patient or even how to set the brakes on a wheelchair, who furthermore has never been taught anything about the cultural or civil rights aspects of disability. Which student is going to be of more use to more future patients? Specific, factual details can be looked up later as needed, whereas broader concepts and principles need to be taught and modeled repeatedly. Of course, they need to be taught and modeled by people who have already learned and internalized them, and such people are in short supply in medicine.
But what I remember most vividly were the moments of unchecked ableism, tiny little comments made by lecturers and heard by lecturees that went unnoticed as problems and sometimes unnoticed altogether. The term “imbecile” was used in a textbook revised weeks before our class began, and did
I mention that I entered medical school in 2003, not 1933? The term “miraculous” was used to describe cochlear implants 5 times in one year (every time the cochlea was mentioned) without any mention of their controversy in the Deaf community or in fact any mention of the existence of the Deaf community. A patient history noted that “the poor guy was confined to a wheelchair” and children with spina bifida were “an expensive and tragic health hazard.” Cerebral palsy, in turn, was “absolutely devastating.” Multiple times we were told, casually, that people with a certain degree of vision loss couldn’t “function.” We were exhorted not to memorize lists of medication as we were not “autistic children who were idiot savants.”
I complained. I complained politely to individual lecturers, in person or via e-mail. Occasionally, my concerns were heard by someone who took them to heart. More often I was told that I was being overly sensitive. I complained politely, then vehemently, to people in charge of curriculum, who also thought that I was taking these remarks too personally. I tried to advocate for improved education about disabilities and was told there simply wasn’t time in the curriculum.
Years passed. A decade. I have completed my training as a pediatrician specializing in the care of children with developmental disabilities. I’m still disabled, myself. I find some other health care professionals, some disabled and some not, who believe that health care trainees should be better taught about disability.
Over and over, they describe approaching administration, curriculum committees, colleagues, asking that disability be included. They point out, as I often do, that disability affects approximately 20% of people, so education on disability will be relevant to a minimum of 20% of patients in any branch of medicine, before factoring in any medical needs related to disability, of which there might be a few. We frame it as a cultural competency issue, a communication issue, a professionalism issue, a health-care disparity issue.
And over and over, they receive the same response: there isn’t time.
We have to cover all of anatomy, they are told. And all of pharmacology. And all of pathology. We cover disabilities in there, anyway, right? Like in pathology of the eye we talk about people becoming blind if we can’t stop it, and I know we cover Down Syndrome in genetics and schizophrenia in psych? We have to cover communication and professionalism, and these other groups are insisting we cover women’s health, and health care disparities for racial minority groups and then we just got a memo that we have to cover health for LGBT people. There isn’t time.
We offer suggestions. Perhaps, disability can be included in small ways in the curriculum you have already. If you are discussing communication with patients who do not speak English, include information on communication with Deaf patients. If you are giving your students a case to discuss about gallstones, give the hypothetical patient bipolar disorder instead of having “no previous medical history.” Include wheelchair-users in your group of “standardized patients” on whom your students practice interview and exam skills.
As I said earlier, teaching conceptually may be a helpful option. Instead of teaching about specific conditions as they relate to concepts in genetics or pathology or organ systems, consider reducing the amount of zebras (rare conditions) students are asked to commit to memory in favor of workshops clustered on a theme. I actually have a dream of a medical school unit on “conditions managed in part or whole by dietary interventions.” Students could learn about diabetes in the context of counting carbohydrates, celiac disease in the context of gluten-free and intestinal pathology, coronary heart disease in the context of the Mediterranean diet, Crohns in the context of a low-fiber diet and intractable seizure disorders in the context of the ketogenic diet. Actual patients could do some of the teaching.
Of course, conceptual teaching about disability is only possible if the teachers know how to teach it. They know a lot about eye pathology already. They would have to be taught about the accuracy or lack thereof of statements they may make about blindness. Students tend to believe what they’re told, so they can easily internalize negative attitudes about disability that are taught to them with the same conviction as the stages in fetal brain development.
Perhaps we should start by teaching the teachers what NOT to say. Fighting ablism isn’t only, or even mostly about a list of words to avoid, but it could be a quick way to prevent medical students from being exposed to them in their lectures. Nuances can come later, perhaps when this generation of medical students become the teachers in a few years.
And if all the negatives, the myths, the misconceptions taught about disability were simply removed? Just imagine how much space would miraculously open up in the curriculum. Why a minute here and a minute there might free up several precious hours!
Or, as my father’s Latin teacher was famous for saying, “If you erase all the wrong stuff, you’ll have plenty of room.”