Using the media to promote issues and change social norms related to disability

Disability, media and social welfare:
Using the media to promote issues and
change social norms related to disability
Arletty Pinel, MD
Social Work and Public Health Interventions
Entertainment Education course
Inter University Centre
Dubrovnik, Croatia
29 June 2010
arletty@gmail.com
Twitter: @ArlettyVox

The World Health Organization
defines disability as follows:
¡  "Disabilities is an umbrella term, covering
impairments, activity limitations, and participation
restrictions. An impairment is a problem in body
function or structure; an activity limitation is a
difﬁculty encountered by an individual in executing
a task or action; while a participation restriction is
a problem experienced by an individual in
involvement in life situations. "
¡  Thus disability is a complex phenomenon,
reﬂecting an interaction between features of a
personʼs body and features of the society in
which he or she lives.""

An individual may also be
considered disabled if:"
¡  He/she has had an impairment in the past or is
seen as disabled based on a personal or group
standard or norm. "
¡  Such impairments may include physical,
sensory, and cognitive or developmental
disabilities."
¡  Mental disorders (also known as psychiatric or
psychosocial disability) and various types of
chronic diseases may also be considered
disabilities."

The International Classification of
Functioning, Disability and Health (ICF) "
¡  Produced by the World Health Organization
(WHO), distinguishes between body functions
(physiological or psychological, e.g. vision) and
body structures (anatomical parts, e.g. the eye
and related structures). "
¡  The introduction of ICF in demographic studies and
censuses of persons with disabilities generated
adjustments in available information resulting in
less variation in estimates. However, data still has
large discrepancies resulting from a a lack of
methodology consistent with that proposed by ICF. "

The ICF lists 9 broad domains of
functioning which can be affected:
¡  Learning and applying knowledge"
¡  General tasks and demands"
¡  Communication"
¡  Mobility"
¡  Self-care"
¡  Domestic life"
¡  Interpersonal interactions and relationships"
¡  Major life areas"
¡  Community, social and civic life"

Disability is the result of the interaction between
persons with different levels of functioning and an
environment that does not take into
consideration these differences
Disability = Functional limitation x
Environment
What is disability?

Impact of the environment in the relationship
between disability and functionality
FL 1 x E 0 = 0 Disability
FL 5 x E 0 = 0 Disability
FL 1 x E 1= 1 Disability
FL 5 x E 5= 25 Disability
FL: Functional Limitation
E: Environment

Disability is part of everyone’s life’s cycle
 Beyond the typical areas of disability: physical,
sensory and mental, people in general face disabling
conditions in a society that is totally unprepared for
dealing with diversity.

...We have all faced or could face these situations!!
Disability in the life cycle

Disability in the life cycle
¡  Increase in life expectancy doesn t prolong youth,
rather old age and its natural consequences "
¡  There are numerous forms of disability throughout
the life cycle since we live in environments that are
not ready to recognize and respond to the needs of
human diversity "
¡  There is an increase of functional limitations as we
age (e.g., loss of sight & hearing, functional
limitations) "
¡  There is a large economic burden on individuals
and their families due to costs of care and
rehabilitation "

The same person may need a ramp for
different reasons throughout life

10% of world’s population =
650 million people

80% of the more than 600 million persons
with disabilities live in countries of the South

Poverty and disability
¡  There is a vicious circle between poverty and
disability "
¡  Poor people has a higher risk of having a
disability due to lack of access to good nutrition,
health services, etc. Disability creates barriers to
education, employment and public services that
could help them come out of poverty"
¡  The number of PwD will increase 120% in the
next 30 years in countries of the South and
approximately 40% in countries of the North "
¡  In a context of low economic, human and social
development, disability tends to be strongly
associated to poverty"

15 to 20% of poor
people in developing
countries live in a
situation of disability

Incidence is highest in countries in conflict or
areas of natural disasters

The toll of war
¡  Nearly eight million men in Europe
returned from the World War I permanently
disabled by injury or disease."
¡  The number of disabled U.S. veterans has
jumped by 25% since 2001 to 2.9 million."
¡  After years of war in Afghanistan, there are
more than one million disabled people
(2004). This is one of the highest
percentages anywhere in the world. "

UNIVERSAL/INCLUSIVE DESIGN
More characteristics that are more effective for
more people in more situations”

7 new principles of Universal
Design
¡  Adaptation of body"
¡  Comfort "
¡  Knowledge "
¡  Understanding"
¡  Identity "
¡  Social integration "
¡  Cultural convenience"

Functional Diversity Environment
To ensure a fair
selection, everyone is
going to do the same
test – climb that
tree.
Equal Opportunity

Inclusive Development
¡  Recognizes diversity as a fundamental aspect in the
process of socioeconomic and human development "
¡  Poses the contribution of every human being to
development"
¡  Instead of implementing isolated policies and actions, it
promotes an integrated strategy that beneﬁts people and
society as a whole"
¡  it s an efective tool to overcome social exclusion and ﬁght
against poverty"
Sustainable Development means
Inclusive Development!"

Disabled? A blind photographer
in charge of a campaign
¡  http://www.youtube.com/watch?
v=6RmSfKWj63k&feature=related

Conceptual models
¡  In concert with disability scholars, the
introduction to the ICF states that a
variety of conceptual models has been
proposed to understand and explain
disability and functioning, which it seeks
to integrate. "

The medical model
¡  Views disability as a problem of the
person, directly caused by disease,
trauma, or other health condition "
¡  Management of the disability is aimed at
"cure," or the individualʼs adjustment and
behavioral change that would lead to an
"almost-cure" or effective cure. "
¡  Medical care is viewed as the main issue,
and at the political level, the principal
response is that of modifying or reforming
healthcare policy."

The social model
¡  Disability" as a socially created problem and a
matter of the full integration of individuals into
society (Inclusion)"
¡  Not an attribute of an individual, but complex
collection of conditions created by the social
environment "
¡  Hence, the management of the problem requires
social action and is the collective responsibility of
society at large to make the environmental
modiﬁcations necessary for the full participation"
¡  Both cultural and ideological, requiring individual,
community, and large-scale social change. "
¡  Equal access for someone with a disability is a
human rights issue of major concern."

Poor guy…
He can’t vote because
he’s disabled.
He can’t vote because
there are stairs to the
voting venue!!!
Medical Model
Social Model
VOTE HERE
Disability Paradigms

Other models
¡  Spectrum model - refers to the range of visibility,
audibility and sensibility under which mankind functions.
Disability does not necessarily mean reduced spectrum of
operations."
¡  Moral model - refers to the attitude that people are
morally responsible for their own disability (e.g., result of
bad actions of parents, or as a result of practicing witchcraft,
karma)."
¡  Expert/professional model - professionals identify
the impairment and its limitations (using the medical model),
and take the necessary action to improve the position of the
disabled person. "
¡  Tragedy/charity model - depicts disabled people as
victims of circumstance who are deserving of pity. This,
along with the medical model, are the models most used by
non-disabled people to deﬁne and explain disability."

Other models (cont d)
¡  Legitimacy model - views disability as a value-based
determination about which explanations for the atypical are
legitimate for membership in the disability category "
¡  Social adapted model - the surrounding society and
environment are more limiting than the disability itself"
¡  Economic model deﬁnes disability by a personʼs inability to
participate in work and the degree to which impairment
affects an individual s productivity and the economic
consequences for the individual, employer and the state "
¡  Empowering model - allows for the person with a disability
and his/her family to decide the course of their treatment
and what services they wish to beneﬁt from "
¡  Market model - disability is minority rights and consumerist
model of disability recognizes people with disabilities and
their Stakeholders as representing a large group of
consumers, employees and voters "

Political rights, social inclusion and
citizenship
¡  In developed countries, the debate has
moved beyond a concern about the
perceived cost of maintaining
dependent people with disabilities to an
effort of ﬁnding effective ways to ensure
that people with disabilities can
participate in and contribute to society
in all spheres of life "

Assistive Technology (AT)"
¡  A generic term for devices and
modiﬁcations (for a person or within a
society) that help overcome or remove a
disability "
l  First recorded example of the use of a
prosthesis dates to at least 1800 BC"
l  Wheelchair, 17th century. "
l  Modern examples are text telephones,
accessible keyboards, large print, Braille,
speech recognition computer software "
l  People with disabilities often develop
personal or community adaptations (e.g.,
sign language) "

Accessible computing
¡  Various organizations have formed to develop software and
hardware to make computers more accessible for people
with disabilities. "
¡  Some software and hardware, such as SmartboxAT's
The Grid, Freedom Scientific's JAWS, the Free and Open
Source alternative Orca etc. has been specifically designed
for people with disabilities; other pieces of software and
hardware, such as Nuance's Dragon NaturallySpeaking,
were not developed specifically for people with disabilities,
but can be used to increase accessibility "
¡  The Internet is also used by disability activists and charities
to network and further their goals"

Government and international
policies and support"

Ugly laws
¡  From 1860s until 970s, several American cities had
ugly laws making it illegal for persons with
"unsightly or disgusting" disabilities to appear in
public. The goal of these laws was seemingly to
preserve the quality of life for the community "
¡  The most commonly cited Ugly Law is that of the
"City of Chicago Ordinance, 1911" "
l  “No person who is diseased, maimed, mutilated or in any way deformed so as to be
an unsightly or disgusting object or improper person to be allowed in or on the
public ways or other public places in this city, or shall therein or thereon expose
himself to public view, under a penalty of not less than one dollar nor more than
ﬁfty dollars for each offense.” "
¡  Chicago was the last to repeal its Ugly Law as late
as 1974"

Disability rights movement"
¡  Led by individuals with disabilities, began in the
1970s. This self-advocacy is often seen as largely
responsible for the shift toward independent living
and accessibility "
¡  The term "Independent Living" was taken from
1959 California legislation which enabled people
who had acquired a disability due to polio to leave
hospital wards and move back into the community
with the help of cash beneﬁts for the purchase of
personal assistance with the activities of daily
living"
¡  With its origins in the U.S. civil rights and
consumer movements of the late 1960s, the
movement and its philosophy have since spread
to other continents inﬂuencing self-perception,
organization and social policy "

United States
¡  Rehabilitation Act of 1973 - all organizations that
receive government funding to provide
accessibility programs and services "
¡  Americans with Disabilities Act of 1990 (ADA) -
prohibits private employers, state and local
governments, employment agencies and labor
unions from discriminating against qualiﬁed
individuals with disabilities in job application
procedures, hiring, ﬁring, etc. "
¡  Businesses must make "reasonable
accommodation" to people with different needs. "

African Americans and disability
¡  According to the 2000 U.S. Census, the African
American community has the highest rate of
disability at 20.8 percent"
¡  African Americans with a disability are subject
to not only this stigma but also to the additional
forces of race discrimination"
¡  African American women who have a disability
face "triple jeopardy" syndrome: discrimination
due to their condition, race, and gender (Dr
Eddie Glenn of Howard University)"

Beginnings
¡  In 1976, the UN launched its International Year for
Disabled Persons (1981), later re-named the
International Year of Disabled Persons. The UN
Decade of Disabled Persons (1983ﾐ1993)
featured a World Programme of Action
Concerning Disabled Persons. In 1979,
Frank Bowe was the only person with a disability
representing any country in the planning of
IYDP-1981. Today, many countries have named
representatives who are themselves individuals
with disabilities. T"
¡  In 1984, UNESCO accepted sign language for
use in education of deaf children and youth. "

Convention on the Rights of
Persons with Disabilities (2006)"
¡  The ﬁrst human rights treaty of the 21st
century, to protect and enhance the rights and
opportunities of the world's persons with disabilities"
¡  The ﬁrst human rights convention to include sexual
and reproductive health "
¡  Countries that sign up to the convention will be
required to adopt national laws, and remove old
ones, so that persons with disabilities would, for
example, have equal rights to education,
employment, cultural life; the right to own & inherit
property; not be discriminated against in marriage,
children; not be unwilling subjects in research"

The Convention of the Rights of Persons
with Disabilities is an opportunity"
"
¡  Provides visibility to persons with disabilities"
¡  Places persons with disabilities in the terrain of
citizenship"
¡  Makes evident the need of development
indicators to monitor the implementation process"

Sexuality and disability
¡  Consequence of social attitudes and personal
constructs"
¡  Strong stigma"
¡  Cultural patterns"
¡  Professional approaches "
¡  Some myths about sexuality and persons with
disability"

Origins of sexual and emotional
problems
¡  Self-esteem"
¡  Self image"
¡  Appropriate attitude to face prejudice"
¡  Lack or inappropriate information"

International Recommendations: WHO,
UNFPA
In 2009 WHO and UNFPA published
“Promoting sexual and
reproductive health for persons
with disabilities” which provides
basic elements to promote sexual and
reproductive health and HIV
prevention among persons with
disabilities.
Includes recommendations on how to
monitor and evaluate that persons with
disabilities receive appropriate
services and be satisfied with them
http://www.who.int/reproductivehealth/
publications/general/9789241598682/
en/index.html

WHERE ARE WE?
HIV, AIDS AND DISABILITY

With the advancement of
medicine, people living with HIV
live longer and may have
complications from the disease
and/or treatment that may cause
disabilities.
People with disabilities have a
higher risk for STIs and HIV due
to their greater vulnerability to
sexual abuse and lack of access
to communication and services.
Are National AIDS
Programs prepared to
address this reality?
HIV, AIDS and
disability

General situation
¡  Persons with disabilities are more
vulnerable to HIV and sexual violence"
¡  A chain of barriers, taboos and social
exclusion interferes their access to
prevention care and support services"
¡  We continue to believe that persons with
disabilities are not sexually active and
therefore not at risk for STIs"
¡  Because of these myths, prevention and
educational campaigns and programs ignore
persons with disabilities"
¡  Organizations and institutions that work with
persons with disabilities still do not take into
consideration the sex education and access
to information needs of their clients"
¡  Persons with disabilities that are living with
HIV and AIDS face double stigma that
increases stigma and isolation"

PUBLIC
EDUCATION AND
COMMUNICATION
Since 2008, the Central
American Fora on HIV-AIDS
and Disability resulted in IEC
strategies for prevention for
different disabilities
targeting health
professionals and general
public.

EDUCACIÓN PÚBLICA Y COMUNICACIÓN

¡  DVD: Panama awareness raising
campaign

Which way do you want to go?
Inclusion Exclusion

Special thanks for content supplied by:
¡  Rosângela Berman-Bieler
¡  Hilda Maria Aloisi
¡  SENADIS

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