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Dec. 30th, 2012 12:23 pm
Conspiracy Circles
I am sitting around a table at a professional meeting. It’s not a typical academic conference where snippets of research are presented seriatim to a massive audience of critical colleagues and everyone gets a CME certificate in the mail for showing up. Rather, it’s the annual working meeting of a group I’ve informally described as “the 30 other people in the country who care as much as I do about how health care providers are trained to think about disability.” Officially it’s the “Alliance for Disability in Health Care Education.” About 15 member are actually in the room, while a handful more participate by speakerphone. A few who are local drop in and out amid professional commitments. There are bagels and coffee at the sideboard, and pizza is brought in for lunch. People give each other directions to the accessible bathroom and issue warnings about the doors. I’m very much the junior person in the room, and most of them already know each other. Not knowing how many are expected, I take a chair away from the table but am invited to join the circle. I drag over a chair without casters and accept. I feel at home.
I’m in medical school, fuming once again at the depiction of disability being taught in our lecture halls. I’m told disabled lives are “tragic.” My own disability is described as “absolutely devastating.” . Symptoms of mental illness are ridiculed. Patients are described as “the poor guy” and “confined to a wheelchair.” Or they are described as “amazing” for waking up each day disabled and carrying on. We are taught about specific disabling conditions, but nothing about disability. I protest tactfully. I protest vehemently. I’m seen as a single person taking matters far too personally. I see it as a systemic problem, with the fact that no one else notices the problem being a symptom of its pervasiveness. There’s the wonderful Diversity office, but no one in the official chain of command takes my concerns seriously. They try to make it all about my too-sensitive feelings. I think it’s all about the subsequent patients that my classmates are being taught to ridicule, pity and Other. I go looking for data, the language that physicians are more likely to . I find some articles suggesting that physician attitudes about disability have been measured as negative. I start collecting articles. Eventually I give a talk, “What your patient with disabilities wish you’d learned in medical school.” The audience is receptive but can that translate to improved patient care? I wonder if my hour talk could be shown to make a difference, given as a sort of inoculation to first year medical students against the negativity they will soon encounter. Years go by and my article collection slowly grows.
My fellowship involves an on-line course covering various aspects of developmental disability. This week we are talking about how disability affects the whole family. We are asked to explain “Welcome To Holland,” an essay frequently shared to describe the experience of parenting a child with a disability. I respond to the question asked, and debate the wisdom of bringing up the notion that people with disabilities ourselves have our own cultural narratives that do not always overlap with the ones shared by parents. I decide to risk it, posting links to the Spoon Theory, Unspeakable Conversations, and a well-known Wired interview with Ari Ne’eman. Then I wait to get into trouble. Instead, one of our professors for the course, shows my response to a colleague who is a member of the Alliance. The colleague e-mails me, asks if she can share my post with the board members who are discussing disability culture, and then invites me to join. I contain my excitement just long enough to type a response. I had not dared to dream such a group existed.
Around the table, we are discussing ways to integrate disability into health care curricula. There is a question about language. A subcommittee is advocating “People First.” I take a deep breath, explain my background with People First from my disability advocacy work, but then talk about the view common in the Autistic community about Autism as identity, advise against blanket teaching of People First for this reason. It is well received. The Deaf community is mentioned by a hearing person as having a similar group identity. I don’t know if anyone in the room has a personal tie to the Deaf community, but many of us are familiar. Someone explains the telephone relay service to someone who was unfamiliar with it. Someone else brings up the in-group use of “crip,” which she uses but would not want to hear from her physician to describe her or anyone else. We talk about in-community use versus what we should ask non-disabled health care professionals to use. We don’t completely agree but we do all listen. And think.
I am sitting on the floor of the hospital library reading articles for my fellowship research project, skimming through methods and conclusions and stuck on the question of data collection. I’m struggling with the measures used to assess attitudes about disability. Articles in this field are roughly grouped into two categories, those that use the ADTP and those that don’t. The ADTP is a survey that is studied and validated and comparable revered and – from 1960. About half the articles I’ve read use it. The rest use or adapt an array of other surveys or make up their own entirely. I’ve only seen one particular non-ADTP survey used in more than one article. So these other measures, some of which (unlike the ADTP) are health-care specific, aren’t well studied or validated or comparable. And I’m at a crossroads myself, trying to decide if I should use the ADTP, or one of these other rarely used scales that I may or may not be able to find, or make up my own. Or a combination. I need expert advice. I have a “scholarly oversight committee” but it contains two people from my department who specialize in autism and one from what I call the “grown up hospital” who specializes in clinically relevant research. They know a lot more about research than I do, but have no particular experience with attitude measures. My eyes land on the name of the “corresponding author” of one of the articles, and the footnote where it gives snail and e-mail addresses to contact. It’s the person who invited me to join the Alliance.
I am reading another article from a medical journal, one written in the UK. A lot of the disability in health care education literature comes out of the UK. It talks about the Social Model of disability and quotes Tom Shakespeare. I know his writings from Ouch!, the BBC disability blog. I read that for fun. I learned about models of disability on my own, mostly via the internet over the past decade. I’ve scarcely met any other health care professionals who are familiar with disability culture or disability studies, even those who work primarily with patients who have disabilities.
Now I’m talking about models of disability with the Alliance, trying to decide which models we should include, which are used by physicians, by disabilities scholars, by rehabilitation professionals, by the WHO. We try to trim a list of 8 down to a more realistic size. I teach some about the models I know. I learn some from others with different backgrounds. I am the only member of my subcommittee at the meeting, and in fact, the other two compiled the list without me due to conflicting schedules and their physical proximity to one another. I wonder if I should join a different subcommittee, but my pediatric experience is thought to be a good balance for their rehabilitation backgrounds. I’ll e-mail the subcommittee with the larger group thoughts when I get home.
It’s sort of amazing being in the room with these people. I’d say it was like meeting movie stars, but I can’t think of any specific movie star who I’d be as excited to meet. It’s maybe more like meeting a favorite author, as these are the people whose journal articles I’ve been reading for years. One mentions a colleague of his, asks if I am familiar with him. “Well, only that he wrote an article you referenced in a paper I read on the airplane yesterday,” I say, adding that it’s an article I would find useful for my research. He asks which article. The next week, he e-mails me a copy.
As we break for lunch, I bring up my question to the “corresponding author” about what survey to use for my own research. A few other people chime in. They validate my instinct, which had been to combine the ATDP with some of my own questions. We all bemoan the lack of a recent, validated measure intended specifically for health care professionals. I suspect that such a measure may someday arise from the Alliance.
Our department has a weekly didactic series, covering things such as ADHD pharmacology and autism diagnostic criteria. One topic is “cultural factors in child development and behavior.” I co-present with one of our psychologists. We include disability and I quote Carol Gill’s description of disability culture. I know her name from disability studies. Now I’m seeing it referenced in medical journals. And as the author of articles.
My computer is out of juice. I’m not the only one, and some of the nearest power outlets are taken by people who have moved to the periphery. I pull up a patch of floor near another outlet. I am offered a seat but am able to decline easily. Someone makes a point, drawing as much from lived experience with disability as professional knowledge. It is a point I would have made, about the dangers of describing people with disabilities as patients outside of an actual clinical encounter. No one has ever beat me to it before. I do stand and return to the table, but merely to agree. Three of us talk about assumptions made about our disabilities. One, via speakerphone finds that health care professionals tend to underestimate her need for assistance in daily living skills. Another, sitting next to me describes having her dependency consistently overestimated, having professionals assume she spends her life in PT rather than in assessing rehabilitation needs of clients, giving talks and writing research articles. I bring up invisible disability, that I likely have more difficulty performing manual tasks than she does, but that most doctors, glancing at the two of us and seeing her wheelchair, would make the opposite assumption. It’s so unusual to have multiple voices for disability in the room that our ability to report different experiences and perspectives is virtually unprecedented. We reach consensus, to teach students not to make assumptions about either ability or disability.
I’m at the airport, waiting for my delayed plane to arrive and pick up my folder of articles that I recently arrived via interlibrary loan. Group member names keep appearing as authors. The articles start to all reference each other. Sooner or later, everyone cites the 2002 Tervo paper. Finally, I’ve gotten my hands on the Tervo paper, and I’ve read everything relevant that he references that I am able to obtain. I have taken notes on 94 articles. I am going in circles. I may be reaching the end. Does a circle have an end? Maybe it just expands.
An alliance member has invited a colleague to talk about his experience using people with real disabilities as “Standardized Patients” to train medical students. He looks around the table and asks about the group mission. Without missing a beat, the person who invited him described us as a “national conspiracy to expand disability education throughout the health professions.” People smile and nod. Then she realizes what she has said, asks if anyone minds being described as part of a national conspiracy.
No one does.
Since I entered medical school, my personal and professional lives have overlapped in ways that can cause discomfort and discord, both for me and those around me. Even in the best of professional settings, the disability experience is often the last to be considered when discussing disability. Now it’s being considered. More, it’s being proposed as a national standard for medical students, nursing students, rehabilitation trainees and all their teachers. My dream that began as a nightmare is becoming reality. Circles of pastime and profession, fun and future are being entwined.
I am taking my place in the conspiracy circle.
I’m in medical school, fuming once again at the depiction of disability being taught in our lecture halls. I’m told disabled lives are “tragic.” My own disability is described as “absolutely devastating.” . Symptoms of mental illness are ridiculed. Patients are described as “the poor guy” and “confined to a wheelchair.” Or they are described as “amazing” for waking up each day disabled and carrying on. We are taught about specific disabling conditions, but nothing about disability. I protest tactfully. I protest vehemently. I’m seen as a single person taking matters far too personally. I see it as a systemic problem, with the fact that no one else notices the problem being a symptom of its pervasiveness. There’s the wonderful Diversity office, but no one in the official chain of command takes my concerns seriously. They try to make it all about my too-sensitive feelings. I think it’s all about the subsequent patients that my classmates are being taught to ridicule, pity and Other. I go looking for data, the language that physicians are more likely to . I find some articles suggesting that physician attitudes about disability have been measured as negative. I start collecting articles. Eventually I give a talk, “What your patient with disabilities wish you’d learned in medical school.” The audience is receptive but can that translate to improved patient care? I wonder if my hour talk could be shown to make a difference, given as a sort of inoculation to first year medical students against the negativity they will soon encounter. Years go by and my article collection slowly grows.
My fellowship involves an on-line course covering various aspects of developmental disability. This week we are talking about how disability affects the whole family. We are asked to explain “Welcome To Holland,” an essay frequently shared to describe the experience of parenting a child with a disability. I respond to the question asked, and debate the wisdom of bringing up the notion that people with disabilities ourselves have our own cultural narratives that do not always overlap with the ones shared by parents. I decide to risk it, posting links to the Spoon Theory, Unspeakable Conversations, and a well-known Wired interview with Ari Ne’eman. Then I wait to get into trouble. Instead, one of our professors for the course, shows my response to a colleague who is a member of the Alliance. The colleague e-mails me, asks if she can share my post with the board members who are discussing disability culture, and then invites me to join. I contain my excitement just long enough to type a response. I had not dared to dream such a group existed.
Around the table, we are discussing ways to integrate disability into health care curricula. There is a question about language. A subcommittee is advocating “People First.” I take a deep breath, explain my background with People First from my disability advocacy work, but then talk about the view common in the Autistic community about Autism as identity, advise against blanket teaching of People First for this reason. It is well received. The Deaf community is mentioned by a hearing person as having a similar group identity. I don’t know if anyone in the room has a personal tie to the Deaf community, but many of us are familiar. Someone explains the telephone relay service to someone who was unfamiliar with it. Someone else brings up the in-group use of “crip,” which she uses but would not want to hear from her physician to describe her or anyone else. We talk about in-community use versus what we should ask non-disabled health care professionals to use. We don’t completely agree but we do all listen. And think.
I am sitting on the floor of the hospital library reading articles for my fellowship research project, skimming through methods and conclusions and stuck on the question of data collection. I’m struggling with the measures used to assess attitudes about disability. Articles in this field are roughly grouped into two categories, those that use the ADTP and those that don’t. The ADTP is a survey that is studied and validated and comparable revered and – from 1960. About half the articles I’ve read use it. The rest use or adapt an array of other surveys or make up their own entirely. I’ve only seen one particular non-ADTP survey used in more than one article. So these other measures, some of which (unlike the ADTP) are health-care specific, aren’t well studied or validated or comparable. And I’m at a crossroads myself, trying to decide if I should use the ADTP, or one of these other rarely used scales that I may or may not be able to find, or make up my own. Or a combination. I need expert advice. I have a “scholarly oversight committee” but it contains two people from my department who specialize in autism and one from what I call the “grown up hospital” who specializes in clinically relevant research. They know a lot more about research than I do, but have no particular experience with attitude measures. My eyes land on the name of the “corresponding author” of one of the articles, and the footnote where it gives snail and e-mail addresses to contact. It’s the person who invited me to join the Alliance.
I am reading another article from a medical journal, one written in the UK. A lot of the disability in health care education literature comes out of the UK. It talks about the Social Model of disability and quotes Tom Shakespeare. I know his writings from Ouch!, the BBC disability blog. I read that for fun. I learned about models of disability on my own, mostly via the internet over the past decade. I’ve scarcely met any other health care professionals who are familiar with disability culture or disability studies, even those who work primarily with patients who have disabilities.
Now I’m talking about models of disability with the Alliance, trying to decide which models we should include, which are used by physicians, by disabilities scholars, by rehabilitation professionals, by the WHO. We try to trim a list of 8 down to a more realistic size. I teach some about the models I know. I learn some from others with different backgrounds. I am the only member of my subcommittee at the meeting, and in fact, the other two compiled the list without me due to conflicting schedules and their physical proximity to one another. I wonder if I should join a different subcommittee, but my pediatric experience is thought to be a good balance for their rehabilitation backgrounds. I’ll e-mail the subcommittee with the larger group thoughts when I get home.
It’s sort of amazing being in the room with these people. I’d say it was like meeting movie stars, but I can’t think of any specific movie star who I’d be as excited to meet. It’s maybe more like meeting a favorite author, as these are the people whose journal articles I’ve been reading for years. One mentions a colleague of his, asks if I am familiar with him. “Well, only that he wrote an article you referenced in a paper I read on the airplane yesterday,” I say, adding that it’s an article I would find useful for my research. He asks which article. The next week, he e-mails me a copy.
As we break for lunch, I bring up my question to the “corresponding author” about what survey to use for my own research. A few other people chime in. They validate my instinct, which had been to combine the ATDP with some of my own questions. We all bemoan the lack of a recent, validated measure intended specifically for health care professionals. I suspect that such a measure may someday arise from the Alliance.
Our department has a weekly didactic series, covering things such as ADHD pharmacology and autism diagnostic criteria. One topic is “cultural factors in child development and behavior.” I co-present with one of our psychologists. We include disability and I quote Carol Gill’s description of disability culture. I know her name from disability studies. Now I’m seeing it referenced in medical journals. And as the author of articles.
My computer is out of juice. I’m not the only one, and some of the nearest power outlets are taken by people who have moved to the periphery. I pull up a patch of floor near another outlet. I am offered a seat but am able to decline easily. Someone makes a point, drawing as much from lived experience with disability as professional knowledge. It is a point I would have made, about the dangers of describing people with disabilities as patients outside of an actual clinical encounter. No one has ever beat me to it before. I do stand and return to the table, but merely to agree. Three of us talk about assumptions made about our disabilities. One, via speakerphone finds that health care professionals tend to underestimate her need for assistance in daily living skills. Another, sitting next to me describes having her dependency consistently overestimated, having professionals assume she spends her life in PT rather than in assessing rehabilitation needs of clients, giving talks and writing research articles. I bring up invisible disability, that I likely have more difficulty performing manual tasks than she does, but that most doctors, glancing at the two of us and seeing her wheelchair, would make the opposite assumption. It’s so unusual to have multiple voices for disability in the room that our ability to report different experiences and perspectives is virtually unprecedented. We reach consensus, to teach students not to make assumptions about either ability or disability.
I’m at the airport, waiting for my delayed plane to arrive and pick up my folder of articles that I recently arrived via interlibrary loan. Group member names keep appearing as authors. The articles start to all reference each other. Sooner or later, everyone cites the 2002 Tervo paper. Finally, I’ve gotten my hands on the Tervo paper, and I’ve read everything relevant that he references that I am able to obtain. I have taken notes on 94 articles. I am going in circles. I may be reaching the end. Does a circle have an end? Maybe it just expands.
An alliance member has invited a colleague to talk about his experience using people with real disabilities as “Standardized Patients” to train medical students. He looks around the table and asks about the group mission. Without missing a beat, the person who invited him described us as a “national conspiracy to expand disability education throughout the health professions.” People smile and nod. Then she realizes what she has said, asks if anyone minds being described as part of a national conspiracy.
No one does.
Since I entered medical school, my personal and professional lives have overlapped in ways that can cause discomfort and discord, both for me and those around me. Even in the best of professional settings, the disability experience is often the last to be considered when discussing disability. Now it’s being considered. More, it’s being proposed as a national standard for medical students, nursing students, rehabilitation trainees and all their teachers. My dream that began as a nightmare is becoming reality. Circles of pastime and profession, fun and future are being entwined.
I am taking my place in the conspiracy circle.