DISABILITY STUDIES & MEDICAL EDUCATION Erica Warnock, MS3 University of Minnesota Medical School [email protected] OUTLINE Historical perspective Present perspectives Disability Studies Medicine Future perspective HISTORICAL: THE GREAT DIVIDE Social model vs. Medical model1 Physician’s role Definers of normality/abnormality2 Lead to charity/pity3 “Search and Destroy” mission1 HISTORICAL: OWNING OUR MISTAKES Nazi T4 program Willowbrook Hepatitis study4 Public stripping5 Sterilization/Ashley Treatment Organ transplantation6 PRESENT PERSPECTIVES: DISABILITY STUDIES Divided opinions The wary7 Power inequities Lack of representation in health care fields The optimistic2 Believe partnership is possible and would be beneficial “The Disability Studies community cannot afford to boycott those professionals who share a common interest in change. Together they can make a difference in bringing their common position to professional and disability associations, building bridges that will support strategies to broaden curricula to reflect the interests of people with disabilities, fashion more participatory decision-making infrastructure and generate equitable health policy.” ~ Katherine Seelman8 WHY DS SCHOLARS SHOULD CARE Disability rights issues within health care Same issues as elsewhere9 Health care disparities10 Vicious cycle of poor health and reduced ability to pursue goals of disability rights movement Ethical dilemmas Ability to prevent further injustice/human rights violations Ability to inform research, practice, and policies WHERE TO START? “… Office of the Surgeon General reported that people with disabilities experience significant health disparities, cited the lack of provider training as a major barrier to high-quality health care for this population, and identified the training of health care providers as a central solution.” ~Healthy People 201011 “When they are not brought to the level of consciousness, physicians' personal attitudes, biases, fears, emotional reflexes, psychological defenses, and moods can interfere with their abilities to arrive at an accurate diagnosis, prescribe appropriate treatment, and promote healing.” ~ BL Beagan12 PRESENT PERSPECTIVES: MEDICAL Types of programs13 Standardized patients Simulation exercises Panel discussions Home visits Allied health professionals Cultural competency None explicitly from a disability studies perspectives PRESENT: POOR OUTCOMES “Many courses of instruction medicalize disability, fail to take a holistic view of health, and ignore the human rights of people with disabilities. As a result, most students are sympathetic and display concern but have negative views about the experience of living with disability.” ~Shakespeare, Iezzoni, & Groce14 PRESENT: CULTURAL COMPETENCY Definition15 Knowledge and interpersonal skills Goal is to understand, appreciate, and work with people from other cultures Traditionally race/ethnicity, religion Some include additional categories LGBT and disability IS DISABILITY CULTURE? Endorsed by Gill and other scholars16 “People with disabilities have forged a group identity. We share a common history of oppression and a common bond of resilience. We generate art, music, literature, and other expressions of our lives and our culture, infused from our experience of disability. Most importantly, we are proud of ourselves as people with disabilities. We claim our disabilities with pride as part of our identity.” ~Steven E. Brown, co-founder of the Institute on Disability Culture16 EVALUATING CULTURAL COMPETENCY Pros Form of diversity Framework familiar to students Evidence based17 Cons Describes how things are, not how they could be Misses health care disparities Only 1:1 interaction Only role for physicians is to be aware FUTURE: SOCIAL DETERMINANTS OF HEALTH “ … the unequal distribution of power, income, goods, and services, globally and nationally, the consequent unfairness in the immediate, visible circumstances of peoples lives – their access to health care, schools, and education, their conditions of work and leisure, their homes, communities, towns, or cities – and their chances of leading a flourishing life. This unequal distribution of health-damaging experiences is not in any sense a ‘natural’ phenomenon but is the result of a toxic combination of poor social policies and programmes, unfair economic arrangements, and bad politics. Together, the structural determinants and conditions of daily life constitute the social determinants of health and are responsible for a major part of health inequities between and within countries.”18 “ … the unequal distribution of , income, goods, and services, globally and nationally, the consequent unfairness in the immediate, visible circumstances of peoples lives – their to health care, schools, and , their conditions of and leisure, their homes, , towns, or cities – and their chances of leading a flourishing life. This distribution of health-damaging experiences is ’ phenomenon but is the result of a toxic combination and programmes, , and . Together, the structural determinants and conditions of daily life constitute the social determinants of health and are responsible for a major part of health inequities between and within countries.” SOCIAL DETERMINANTS OF HEALTH Traditionally includes: race/ethnicity, gender, socioeconomic status, education level, geography Disability usually viewed as an outcome measure rather than determinant In executive summary article by WHO commission disability was mentioned as determinant only one time18 Few research centers BENEFITS OF THIS APPROACH Same idea but different terminology Disability as social, not individual problem Identifies things in need of change Avoids “us vs. them” mentality Allies- hope for involvement/change Research funding CONS OF THIS APPROACH Lose disability pride factor Not evidence based Less emphasis on 1:1 interactions FUTURE: GUIDING PRINCIPLES “Nothing about us without us” Evidence based Direct interaction with multiple people with disabilities Some interaction outside of medical settings13 Infused throughout curriculum Promote social model thinking without letting terminology be a barrier Safe place for reflection/challenging assumptions Culture of medicine Applicable to medical practice HOPE FOR THE FUTURE Will medicine welcome disability studies involvement? Cautiously optimistic Will disability studies want to be involved in medical education? “rejection of anything to do with medicine obscures the vital priority of achieving access to good quality healthcare for all people with disabilities” ~Shakespeare9 REFERENCES  Shakespeare, Tom. Disability Rights and Wrongs. London: Routledge, 2006. Print.  Shakespeare T. Review article: Disability studies today and tomorrow. Sociol Health Illn. 2005;27(1):138-148. doi: 10.1111/j.1467-9566.2005.00435.x  Hubbard S. Disability studies and health care curriculum: The great divide. J Allied Health. 2004;33(3):184-188. . Couser GT. What disability studies has to offer medical education. J Med Humanit. 2011;32(1):21-30. doi: 10.1007/s10912-010-9125-1.  Blumberg, Lisa (1990) "Public stripping." Disability Rag 11: 18-20. .Joseph, Fins. "Severe Brain Injury and Organ Solicitation: A Call for Temperance." American Medical Association Journal of Ethics 14.3 (2012): 221-26. Print. REFERENCES  Branfield, Fran. "What Are You Doing Here? 'Non-disabled' People and the Disability Movement: A Response to Robert F. Drake." Disability & Society 13.1 (1998): 143-44. Print.  Seelman, Katherine D. Disability studies in education of public health and health professionals: can it work for all involved? Disability Studies Quarterly. 2004; 24(4)  Shakespeare, Tom. "Still a Health Issue." Disability and Health Journal 5.3 (2012): 129-31. Print.  Iezotti, LI. Testimony to Senate Health, Education, Labor, and Pensions Committee. 2009  Healthy People 2010, as cited in Long-Bellil LM, Robey KL, Graham CL, et al. Teaching medical students about disability: The use of standardized patients. Acad Med. 2011;86(9):11631170. doi: 10.1097/ACM.0b013e318226b5dc . Beagan BL. Teaching social and cultural awareness to medical students: "it's all very nice to talk about it in theory, but ultimately it makes no difference". Acad Med. 2003;78(6):605-614. . REFERENCES . Iezzoni LI. Going beyond disease to address disability. N Engl J Med. 2006;355(10):976-979. doi: 10.1056/NEJMp068093. . Shakespeare T, Iezzoni LI, Groce NE. Disability and the training of health professionals. Lancet. 2009;374(9704):1815-1816  McManus 1988, as cited in Fleming, M and Towey, K. Delivering Culturally Effective Health Care to Adolescents. AMA 1994  Eddey GE, Robey KL. Considering the culture of disability in cultural competence education. Acad Med. 2005;80(7):706-712.  Smedley BD, Stith AY, Nelson AR, as cited in Betancourt, JR. Cultural Competence- Marginal or Mainstream Movement? N Engl J Med 2004;351:953-55  Commission on Social Determinants of Health Final Executive Summary. “Closing the Gap in a Generation”. World Health Organization. 2008. THANK YOU! QUESTIONS?