DISABILITY STUDIES &
MEDICAL EDUCATION
Erica Warnock, MS3
University of Minnesota Medical School
warn0289@umn.edu
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
[1] Shakespeare, Tom. Disability Rights and Wrongs.
London: Routledge, 2006. Print.
[2] 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
[3] Hubbard S. Disability studies and health care
curriculum: The great divide. J Allied Health.
2004;33(3):184-188.
[4]. 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.
[5] Blumberg, Lisa (1990) "Public stripping." Disability Rag
11: 18-20.
[6].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
[7] 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.
[8] 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)
[9] Shakespeare, Tom. "Still a Health Issue." Disability and
Health Journal 5.3 (2012): 129-31. Print.
[10] Iezotti, LI. Testimony to Senate Health, Education, Labor,
and Pensions Committee. 2009
[11] 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
[12]. 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
[13]. Iezzoni LI. Going beyond disease to address disability. N
Engl J Med. 2006;355(10):976-979. doi: 10.1056/NEJMp068093.
[14]. Shakespeare T, Iezzoni LI, Groce NE. Disability and the
training of health professionals. Lancet. 2009;374(9704):1815-1816
[15] McManus 1988, as cited in Fleming, M and Towey, K.
Delivering Culturally Effective Health Care to Adolescents. AMA
1994
[16] Eddey GE, Robey KL. Considering the culture of disability in
cultural competence education. Acad Med. 2005;80(7):706-712.
[17] 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
[18] Commission on Social Determinants of Health Final
Executive Summary. “Closing the Gap in a Generation”. World
Health Organization. 2008.
THANK YOU! QUESTIONS?