Narrating Disability Inside and Outside the Clinic Beyond Empathy

station and to meet him finally anyway so I’ll give my talk and plenty of time for questions my topic is narrative is living inside and out inside and outside the clinic and I want to explore two distinct like strawberry has 2 asses maybe two distinct matters each of which i think has ethical dimensions what happens first when clinical narratives disability go public and second what happens when disability and illness are conflated with in the clinic so will be two quite distinct parts to the top but I think there is a connection now I’m going to be addressing some moral hazards inherent in life writing about endless disability but before I do that and because I’m doing it I want to be clear that I don’t want to do anything I don’t want to say anything that would discourage the the writing of life the practice of life writing about disability and all illness I’ve devoted the latter half of my career to reading and writing about published narratives of illness and disability and it wouldn’t have done so unless I found these narrow as compelling I really began this work about 20 years ago now in the mid-90s it you know I noticed that people were publishing lots of narratives about illness and disability I I began to read them and write about them and I found myself literally without knowing it existed in the field of disability studies but the writing of such an heiress continue to proliferate and I’ve argued in various places that the so-called memoir boom in the US and perhaps in the UK as well as coincided with and to expect some had been driven by the rise of such narratives I’ve compiled a long list of conditions from anxiety and autism and to Tourette’s and vitiligo that have generated memoirs in the last 20 years and of this continues to grow recently I came across a book review of two narratives of amnesia think about that how do you do it well you interview people who knew you before your amnesia strokin and what a great project that is I mean that’s how you find out who you were at you are becomes a necessarily collaborative project and anyway whether inside you could say the PM is narrative of discipline in everson something in American literary epidemic as some people think it’s you know it’s gone too far we have too many but I don’t whether inside the clinic such narratives can be in and of themselves restorative if not healing in our introduction to depression and narrative telling the dark Hilary Clark said it well we should listen to personal narrows of illness and disability really attending to them and their own merits as opposed to using them in order to come to diagnosis and impose regimes of treatment because such narratives give voice to the ill of the traumatized and the disabled those trying to make sense of the catastrophic interruptions or shifts in their lives and help them navigate the wildering impersonal context of medical diagnosis and treatment and one of those traumatic experiences would be catastrophic interruptions would be the onset of amnesia so please don’t misunderstand me nothing I say today should be construed is intending to discourage writing about illness and disability I’m only concerned to point out certain dangers are inherent in this endeavor inside the clinic today psychiatry as you probably know is moving away from narrative therapy to a drug therapy as this is happening interestingly narrative competence is being emphasized at least by some and the treatment of non mental illness I refer here to the clinical approach known as narrative medicine as advanced primarily by dr. Rita Sharon according to her share on the narrative approach elicits quote accounts of self that include emotional familial aspirational creative aspects of the self lesson narrative medicine the physicians relation to her patients approaches that of a psychotherapist the aim and claim of narrative medicine is that it recognizes patients home personhood addressing their illnesses is part of multi-dimensional life narratives so far so good a greater knowledge of parents patients and patients lives can enable the writing of invasive case studies indeed in a paper given at a 2000 MLA MLA convention in a panel I was part of Rita charan herself acknowledged this her title listening telling suffering and carrying on colon reflective practice or health imperialism indicates the possibility that rather than empowering patients eret of Medicine may amplify the power of clinicians at the expense of patients it may thus increase the risk of what I call deferred iatrogenic pain iatrogenic

pain as you may know is pain caused by medical treatment and I coined the term deferred or maybe issues in referred iatrogenic pain to refer to suffering inflicted on patients not by their treatment but my narratives of their treatment this can happen when the boundary of the clinic always porous is reached stories that originated in the clinic can cause pain to patients other fan is when they’re encountered outside the clinic consider this case when I was speaking at an American University a couple of years ago a student approached me graduate student at the age of seven I’ll call her Julia she was operated on for significant physical impairment which required ongoing medical attention to help her cope with this regimen she was sent to a therapist nearly two decades later learning that the therapist that had been appointed to a prestigious academic post Julia looked her up online just out of curiosity as anyone could do these days the therapist resume listed an article Julia thought might be about her reading it confirmed your suspicions and she found it deeply unsettling pathetic illustrates for starters of the Internet is shrunk our world we all have less privacy than we used to and it’s ever easier to trace others and references to our selves scenarios such as Julius however don’t really require the internet the New York Times as an ethics columnist and someone wrote to him a couple of years ago saying that he was browsing in a bookstore I came across it but a book of clinical k stories and he found what he thought was his own story said well what’s going on here is this is legitimate and he found it the point is he found it unsettling to find what he was sure was his story out there circulating in public these stories revealed that even when clinicians disguise the identity of their patients and both patients had been disguised patients may recognize themselves should they happen upon their own case studies and this recognition is very likely to cause them discomfort these therapists probably thought they’d and everything required by professional ethics they probably had but while the clinician may have behaved ethically and even empathetically in the clinic in the extra clinical representation the patient’s feelings that muffin taken generation at the time for treatment Julia was far too young to grant consent so her therapist concealed her identity behind a pseudonym Julia’s youth may have led that therapist to discount the likelihood of her ever reading the article but she did and she readily recognized it as her case and she felt somehow violated the presumption of anonymity was not sufficient to protect her the point is that ethical guidelines do not guarantee that case histories may not care cause pain to their subjects such pain may not rise to the level of manifest harm and thus clinicians may not have violated the Hippocratic precept to do no harm but in Julia’s case the pain was far from negligible despite being long the delay so I call a deferred iatrogenic pain what are the point it may have been avoidable or maybe not it may not always be possible to conceal patient’s identities from them the rarer the case the more publishable and the very details that weren’t writing up a rare case and may enable patients to recognize themselves in any event among the potential readers of case studies patients are uniquely equipped to know all the identifying details and of course who provided treatment they may they may resent the presumption of authorship on the part of clinicians even if their rights have not been violated the question is whether their discomfort is outweighed by the benefits of the narrative the question then becomes who benefits presumably the goal of writing case histories is to advance the public’s understand advance the understanding of particular conditions improve their treatment in principle the case history serves the welfare of all the public health at the same time there are undeniable benefits to the office in committing a paycut case to print doing so can build a reputation and advance a career and lead to monetary gain consider Oliver Sacks the world’s most leading neurologist his fame and fortune are based not on original contributions to neurology but on his non clinical case studies of unusual sin groans so medical professionals are not in the best position to judge the merits of writing up a particular case indeed the writing of case studies may entail a conflict of interest authors stand to gain from them in a way that is not true for their subjects and this may affect their judgment of the medical benefits of such projects excuse me I cannot speak for Julia indeed she herself is not short just why she was so troubled by reading her case and she’s currently grappling with that and I look forward to hearing

what she finally comes up with my sense is that a patient’s discomfort may be a function of the intrinsic disparity between the patients and the clinicians relation to a case patient comes to the collision clinician in the hope of empathetic help of care if not a cure to the professional however the patient represents an instance of something beyond itself beyond herself perhaps a condition in which the professional has an intellectual interest or even a research program the hurt caused by a patient self-recognition may arise from the feelings that one has been reduced to one’s condition and thereby objectified what disappointin offends a patient who reads her own case narrative then maybe the discovery that she is not just a person or even a patient but also a case in need a case of becks to her therapist or physician thus the patient will reach their own case may make me uncomfortable discovery that in the therapeutic relationship her well-being was not an end in itself or at least not the only end she has also been a means to an end whether she values that in may depend on what she takes it to be if she sees her case as being used to advance knowledge of her condition he may decide from her discount justified if she sees the end his career ‘used she may not I would advise those are right about illness and disability than to err on the side of restraint it may not be enough to take the precaution of disguising a patient’s identity or of obtaining consent the patient who gives consent may have no idea what would it be like to come upon her story in alien discourse it may be advisable to assume that one’s patient will read the narrative of her case and recognize it as her own and to write accordingly get one rights and not relate it one imagines it will cause undue discomfort so one kind of moral has it arises when the boundary of the clinic is breached by narratives of disability and that would be truly on the narratives of illness as well but another kind of rises when these two categories are conflated with in the clinic in my early work on narrative illness and disability my very early work I coined Lee an umbrella term autobiography to cover both though I approached illnesses and disabilities separately I was careful to separate them in recovering bodies and it was actually very quick a little nervous about time at the time about even combining them in the same volume this term appealed to me as a one word alternative to what seemed alternative klum’s one word alternative to what seem clumsy labels like well merit is an illness and disability and I could sometimes that’s gonna be a lot to repeat and repeat repeat or errors of Allah anomalous somatic conditions I mean illness and disability or both anomalous somatic conditions but that’s kind of a mouthful photography that solves it all but my neologism proved somewhat ill-advised various individual individual with disabilities made it clear to me that it was problematic to use the root hello to refer to their conditions which were not illnesses and for which they did not necessarily suffer so although my term has been picked up in perpetrated by others perpetuated perpetrated and perpetuated I have abandoned using it some years later in writing an essay for MLA bowing teaching life writing like point a new term for such narratives which with some other clever quality of life writing that is taking life writing quality of life in calculating quality of life as a adjective quality of life writing which combines the current current academic term like writing with a term common and medical discourse quality of life in that essay I argued as follows for teaching such narratives outside the clinic to the general population increasingly to make decisions that often literally involve life or death citizens need to understand illness and disability in cultural and historical contexts with the aging of the North American population the invention and application of new medical technologies in a looming crisis in health care disability of literacy will become all the more desirable and indeed indispensable as an attribute of an informed public narratives of disease and disability command attention today in part because they epitomize quality of life issues crucial to public policy but that’s the quote from that is a most of my work is concerned with how published disability Nerys function outside the clinic even against the clinic by d stigmatizing disability that’s really I guess I’ve said in defense of auto photography because that I think I said in the book that I see autobiography as inherently or

inherently aunty Pantha graphic today I want to focus on the value of such narratives inside the clinic broadly defined my attention was focused on this matter a few years ago when the University of which I taught for most of my career created a new medical school without consulting its faculty of course that event prompted me as the founder and director of off toes disability studies program to think about my work in New conduct and interestingly the Dean thought the faculty wasn’t really consulted me in the decision at some point the dean of liberal arts and studies patched together a committee of faculty sort of to the advisory to the medical school and did you think to include the founder and director of the disability studies program no he did not why would you do that so but being little push yet that was at that time tenure rides at home you know I really should be on this committee so I was added to the committee and I got to make my pitch to thee to the new director of the new medical school who nodded politely um how I wondered might the new medical curriculum integrate disability studies generally and quality of life writing in particular our quality of life may seem a neutral in unobjectionable term but it happens if probably most of you know to be quite fraud because it’s clinical application too often encodes medical bias against illness and disability wait what why call this a bias shouldn’t physicians be against illness isn’t the point of medicine to heal the sick well sure this preference to name it more neutrally is inherent in medical practice and rightly so much of the time medicines constructs work well enough but medicine operates within not outside cultural contexts and so medicine often encodes and thus reinforces common prejudices against certain kinds of bodies good evidence of this if we needed it appeared in a recent TED talk by dr. Peter Atia who according to a New York Times story quote admitted to something he believes many doctors may in fact be guilty of that can passion for overweight and obese patients often is not quite as deep as it is for those who are sick for other reasons the unlucky ones for instance who develop cancer or another disease who no apparent both of their home many viewers were moved by dr pappy is at the his apology to a diabetic patient that he admitted having blamed for her condition i would have been more impressed by his apology had it not been prompted by his own having been diagnosed with diabetes himself despite what he considers he was very healthy lifestyle now having questioned the medical preference for health i want to distinguish disability from illness admittedly in practice the two often overlap they often coexist in the same body indeed don’t listen disability have reciprocal relations each can cause the order moreover for legal purposes many physical illnesses like hiv/aids cancer and diabetes and mental illnesses schizophrenia bipolar syndrome count as disabilities last while the illness and disability are conceptually distinct the ill and disabled are not distinct populations and the line between disability analyst is not all is clear but while it is very difficult to draw a sharp line between them or even to clearly articulate the difference there is a distinction and it matters it matters in part because the conflation of disability with homeless necessarily engages the medical paradigm with its preference for health and wholeness this paradigm hails or inter club inter pallet interpolates disabled people as sick and or defective it constructs their conditions as requiring medical intervention which is not always fruitful or even desirable or even desire this conflation tends to pathologize disability willy-nilly it may project the desire for cure or it does not exist a related danger of completing disability with illness lies in undervaluing the lives of disabled people numerous studies of establish that people with significant disabilities rate their quality of life nearly as high as non-disabled people rate there’s many disabled people are surprisingly well adjusted to their conditions especially if their impairments are congenital or acquired early in contrast and non-disabled people especially medical professionals typically consider the quality of life of disabled to be quite poor here we can begin to see the danger of the medical bias in favor of help disabled people do not share cannot understand and are

justifiably offended by the attitude of non-disabled people that their lives are of poor quality or even not worth living so there’s always a danger in writing about someone’s disability that the writable project onto a subject his or her own imagined response to being in that condition empathic intentions may be undermined by this projection this is why the golden rule falls short the way you think you would like others to treat you if you were disabled may not be the way disabled people want you to treat them or the way you would want to be treated should you become disabled it’s a big problem Julie and I’ve only recently kind of grappled with it in the way that I’m understanding it now a significant obstacle to the delivery of health care disabled people then is the disparity between the self reports of their quality of life and the estimates of their quality of life by medical professionals non-disabled healthcare professionals render lower estimates of the quality of life of disabled people then those rendered by the general non-disabled population and much lower estimates than the self reports of people with disabilities so you’ve got these three things you’ve got the self reports and they emphasize reports of people with disabilities again generally about as high as the self reports of non disabled people’s quality of life then you’ve got non disabled people’s estimates of the quality of life of people with disabilities and those are always lower and then you’ve got non-disabled medical professionals estimates of the quality of life of people with disabilities and those are even lower than the general non disabled populations estimates hope you’ve got those three things okay now a little apparent the system the term non-disabled health professionals is not tautological but it’s nearly redundant because medical schools have not traditionally accepted disabled students I would refer to this discrepancy between the high first person reports of their own quality of life like people with disabilities and the low third person estimates of their quality of life as the gap okay when I referred to the gap I’m talking about the gap between the self reports and the third person the first person reports and the third person estimates that I think we’re a lot of work needs to be done and where life narrative can can play a great role as I’ve said since medical professionals are after all or above all dedicated the improvement of physical and mental well-being mental well-being they might be expected to devalue states of impairment and illness so the gap may not be surprising but it’s disturbing and more than that it’s dangerous critical disability studies makes the crucial distinction between impairment which is found in the body and disability which in found in the environments response to the required body and think you’re probably all familiar with that distinction so much of disability studies jit is generated by that distinction I want to invoke that distinction to explore some implications of these discrepant perceptions of the quality of life of people with disabilities first I would argue that the gap itself exposes a hidden impairment a collective mind blindness in non-disabled people especially health care professionals who are unable to imagine what disabled people are thinking and feeling one could say that the supposedly non-disabled population actually has a significant cognitive deficit I think some of you know that I’m picking up this to remind bottomless mind blindness from some early I about autism the second the gap constitutes a disability the underestimation of their quality of life by non-disabled people is a significant part of the prejudicial environment in which disabled people struggle to live with dignity I mean prejudicial in the literal sense their lives are pre judged by others to be low in quality and unlike some other aspects of the environment like in accessible facilities the gap cannot be legislated away interestingly the AMA I think recently decided that obesity should be called the disease which is as close as you can come to legislating away or trying to legislate away you know sticking say it’s a disease just save the disease and there are times recently said I’ve had a thing about should or shouldn’t it in there in here you know their arguments on both sides but that’s not legislation actually the aea cannot legislate away prejudice it can legislate away barriers or try to insult

the physical environment is resistance in many ways but the psychological environment is is rescinded resistant in different ways the underestimation of the quality of life of disabled people while not a narrative in a narrow sense of the term is amiss is a representation actually a misrepresentation that informs and generates powerful narratives indeed his mind blindness can have life or death consequences in the delivery of health care to people with disabilities there’s a lot of anecdotal evidence you probably hear it himself I would call the igloo in peace with blobs under the title bad crippled and I would recommend his blog he is an anthropologist longtime paraplegic recently had to be hospitalized for pressure wound and he was informed soon after his admission very sympathetic physician that he could be made comfortable if he wished to decline treatment got on the phone and made sure he had lots of missouri’s and that this doctor knew he was an anthropologist and an academic so that he life would be revalued and you hear