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8/3/2019 Cultural Approaches to Disability Week Four
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Cultural Approaches to
Disability
Spring 2012
Professor Hannah Taieb
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Why is disability policy
important? Who takes
responsibility?
± The family?
± The employer?
± The medical
establishment?
± The government?
± Religious groups?
± Charity, private giving?
± Associations?
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Why is disability policy
important? Should resources go
towards rehabilitation
or towards
compensation?
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Why is disability policy
important? Should resources go
towards changing
society (accessibility,
universal design) or towards the person?
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Why is disability policy
important? Should it be to protect
the right to be
different? To have
special needs,specialized
institutions?
Or the right to be like
others?
Universalism?
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sa ty assoc at ons:
by disabled people,
or for disabled people?
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Another French paradox?
France has a welfare
state tradition and is
considered to have
one of the best healthcare systems in the
world ± and yet is
considered to be
« behind » in terms of accessibility, disability
rights movements,
and disability studies
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The French health system
TheWorld Health Organization's ranking of
the world's health systems (2000)
1 France
2 Italy
3 San Marino
4 Andorra5 Malta
6 Singapore
7 Spain
8 Oman
9 Austria
10 Japan
11 Norway
12 Portugal13 Monaco
14 Greece
15 Iceland
16 Luxembourg
37 United States of America
Preventable deaths »
1 France 65
2 Japan / Australia 71
3 Spain / Italy 74
4 Canada 77
5 Norway 80
6 Netherlands / Sweden 82
7 Greece / Austria 84
8 Germany 90
9 Finland 93
10 New Zealand 96 11 Denmark 101
12 U.J. / Ireland 103
13 Portugal 104
14 U.S. 110
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Life expectancy
1 Japan 74.5
2 Australia 73.2
3 France 73.1
4 Sweden 73.0
5 Spain 72.8
6 Italy 72.7
7 Greece 72.5
8 Switzerland 72.5
9 Monaco 72.4
10 Andorra 72.3
11 San Marino 72.3
12 Canada 72.0
13 Netherlands 72.0
14 United Kingdom 71.7
15 Norway 71.7
«.
24 United States 70.0 67.5 72.6
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WHO Issues New Healthy Life
Expectancy Rankings For the first time, the WHO has calculated healthy life expectancy for babies bornin 1999 based upon an indicator developed by WHO scientists, Disability AdjustedLife Expectancy (DALE). DALE summarizes the expected number of years to be livedin what might be termed the equivalent of "full health." To calculate DALE, the yearsof ill-health are weighted according to severity and subtracted from the expectedoverall life expectancy to give the equivalent years of healthy life.
TheWHO rankings show that years lost to disability are substantially higher in poorer
countries because some limitations -- injury, blindness, paralysis and the debilitatingeffects of several tropical diseases such as malaria -- strike children and youngadults. People in the healthiest regions lose some 9 percent of their lives to disability,versus 14 percent in the worst-off countries ..
The United States rated 24th under this system, or an average of 70.0 years of healthy life for babies born in 1999 ."The position of the United States is one of themajor surprises of the new rating system," says Christopher Murray, M.D., Ph.D.,Director of WHO's Global Programme on Evidence for Health Policy. "Basically, you
die earlier and spend more time disabled if you¶re an American rather than a member of most other advanced countries."
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Reasons for
low U.S. life expectancy? TheWHO cites various causes for why the United States ranks relatively low amongwealthy nations. These reasons include:
In the United States, some groups, such as Native Americans, rural African Americans and the inner city poor, have extremely poor health, more characteristic of a poor developing country rather than a rich industrialized one.
The HIV epidemic causes a higher proportion of death and disability to U.S. youngand middle-aged than in most other advanced countries. HIV-AIDS cut three monthsfrom the healthy life expectancy of male American babies born in 1999, and onemonth from female lives;
The U.S. is one of the leading countries for cancers relating to tobacco, especiallylung cancer Tobacco use also causes chronic lung disease.
A high coronary heart disease rate, which has dropped in recent years but remainshigh;
Fairly high levels of violence, especially of homicides, when compared to other
industrial countries.
(Christopher Murray, M.D., Ph.D., Director of WHO's Global Programme on Evidencefor Health Policy.)
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Money spent on health care as a
percentage of GNPTotal Expenditure on Health as % of GDP 2005
1 Marshall Islands 15.4
2 United States of America 15.2
8 Malawi 12.29 Switzerland 11.4
10 France 11.2Defintion: Total expenditure on health as a percentageof gross domestic product is the total of government,
third party (such as employer and insurance) ,and out-of-pocket individual amounts spentfor health care in each country, as a percent of thecountry's gross domestic product (ppp).
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Historical background
Middle Ages: the concept of « the
deserving poor », ie those who do not
work because they CANNOT work
« cripples », the insane, old people,
orphans, widows
A visible infirmity confirmed your belonging
to the deserving poor (rather then to the
undeserving poor = the vagrant)
(Winance et al 162)
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The vagrant
People travelled in search of work
They were « beggers », needed to be
controlled (in England, workhouses« ) So it became necessary to separate the
deserving from the undeserving: this
meant a definition of the disabled, a way of
proving you were disabled
In France >> development of hospitals and
confinement
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After the French revolution
Public charity replaces private charity (or
church charity)
Assistance is the duty of the State;private charity is also to be encouraged
Public aid establishments created but at
the local level, therefore optional
1905: public assistance in France
becomes a legal obligation in France for
the eldery, crippled and incurable
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Late 19th-early 20th century
Industrialization:
± More work-related accidents
± The working poor (whereas prior to this you were either working,
OR poor) cannot save up enough to protect
themselves in case of injury
±What will happen to those disabled in a workaccident?
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Work-related accidents
Prior to 1898: you only get compensation if
it was your employer¶s fault (which was
hard to prove)
1898 law: there is collective responsibility
« for risk »
You have the right to reparations
The reparations are because you have lost
the ability to work
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The concept of rehabilitation
Disabled veterans deserve rehabilitation
(physiotherapy, prostheses) in order to
allow them to go back to work
Context: need for workforce after WWI
This concept then extended to other
disabled civilians or those with a chronic
impairment
Rehabilitation>>reinsertion
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Disabled veterans
Once again, collective responsibility for
collective risk
Disabled veterans deserve reparations Pensions
1919: official scale for assessing
disabilities
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Children and schools
in France and in the USA 1760: Institut des
Sourds-Muets
founded by the
Abbé de l¶épée
1784: Institution desenfants-aveugles
founded by Valentin
Hauy
1882: Jules Ferry
law makes primary
education obligatory
for all children from
6 to 12
1815-1817: First
schools for the Deaf
founded in the U.S.
1829: Perkins
school for the blind
founded
1800s: in the U.S.
Mann reforms
advocate public
schooling,compulsory and
graded
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What about the « abnormal »?
Schools have trouble integrating those
who are « blind, deaf, idiotic, retarded or
with motor deficiences, and also children
who were difficult, unstable, perverted,
dilinquent » etc.
Special schools create to rehabilitate
these children, so they could work
The invention of normalcy? (cf Davis)
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Sécurité sociale Social security
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Sécurité sociale
in France
Long-standing history of
corporations of mutual aid
1893: principe de solidarité
nationale,
assistance médicale gratuitepour tout Français malade et
privé de ressources
1898: accidents de travail
1904: aide-sociale à
l¶enfance 1905: aide aux personnes
agées
1945: unification
of social security :
La branche maladie (maladie,
maternité, invalidité, décès) ;
La branche accidents du travail et
maladies professionnelles ;
La branche vieillesse et veuvage
(retraite) ;
La branche famille
(dont handicap, logement...).
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Social Security
in the USA
1935: during the
Great Depression,
Roosevelt signs the
Social Security Act
Federal Old-Age (Retirement),
Survivors, and Disability Insurance
Unemployment benefits
Temporary Assistance for Needy
Families
Health Insurance for Aged andDisabled (Medicare)
Grants to States for Medical
Assistance Programs (Medicaid)
State Children's Health Insurance
Program
Supplemental Security Income Patient Protection and Affordable Care
Act (2010)
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Associations
In France associations were created to
help children and other disabled people
« adjust », to get them out of hospices and
psychiatric hospitals, to rehabilitate them,
to reintegrate them.
FRENCH SPECIFICITY: these
associations were private, but run withpublic funding.
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Associations
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THE 1975 Law
Prior to the 1975 law, France¶s
legislation deals with work-
related accidents and then
maimed soldiers: definition of
the problem based on how youwere hurt
The 1975 law creates the
status of « handicapped
person » by defining rights for
such persons
In the U.S.: 1973,
section 504 of the
Rehabilitation Act
required any entityreceiving federal
funding to make their
facilities accessible to
the handicapped.
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Category-based Policy
The « handicapped » person is someone
who suffers a disadvantage; a difference
from a social norm, in terms of
performance
1975 law extends to all people with
impairments the rights previously granted
to disabled workers and disabled veteransand maladjusted children
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Category-based policy
1975 law: to grants these rights, we must
create a category: « the handicapped »
± Disabled children have the right to an
education, special education is free and
families are compensated for extra costs
± The « handicapped worker » has a right to
professional insertion into either a normal or special environment, and compensation for
loss of earning
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The medico-social sector
The creation of segregated specialized
institutions that were supposed to lead to
reintegration ± the « segregatory detour »
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The category-based approach
In France, the category-based approach
meant that « accessibilty » until 1991 was
interpreted to mean that something should
be made accessible as soon as someone
from that category was present
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In the USA
1973: Section 504 of the Rehabilitation Act
required government programs,
contractors, and any entity receiving
federal funding to make their facilities
accessible to the handicapped. Its
language was relatively restrictive, and the
law applied only when persons wereexcluded from a program or employment
"solely" because of their disability.
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In the USA
1970s: independent living
movement
Don¶t change the person
(rehabilitation, medicalmodel), change the
environment (accessibility,
universal design)
Rather than « the average
person », the referent is
« humanity »
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In the USA
1990: Militant movement for civil
rights
Demonstration in front of white
house Signing of Americans with
Disabilities act which prohibits
discrimination against people
with disabilities in employment,
transportation, publicaccommodation,
communications, and
governmental activities.
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1990s
A new concept: persons in a situation of
disability ± disability is not in the person,
but between the person and the
environment
You don¶t assess the person, you assess
the « situation » without stigmatizing the
person
You work to help either targeting the
person or the environment or both (Winance et al 172)
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2005 law
Broadens the notion of participation and
citizenship:
± Not only work and school, but leisure activities
and political rights
Right to existence income
+ right to compensation
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2005 law -- definitions
« Constitue un handicap, au sens de la présente loi, toute
limitation d'activité ou restriction de participation à la vie
en société subie dans son environnement par une
personne en raison d'une altération substantielle,
durable ou définitive d'une ou plusieurs fonctions
physiques, sensorielles, mentales, cognitives ou
psychiques, d'un polyhandicap ou d'un trouble de santé
invalidant. »
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2005 law -- organization
Accueil des personnes handicapées
La loi crée une Maison départementale des personnes handicapées dans chaque
département sous la direction du Conseil général. Elle a une mission d'accueil,
d'information, d'accompagnement et de conseil des personnes handicapées et de
leur famille, ainsi que de sensibilisation de tous les citoyens au handicap.
Chaque MDPH met en place une équipe pluridisciplinaire qui évalue les besoins de lapersonne handicapée, et une Commission des droits et de l'autonomie des
personnes handicapées (CDAPH) qui prend les décisions relatives à l'ensemble des
droits de la personne.
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2005 law -- compensation
Droit à la compensation
la personne handicapée a droit à la compensation des
conséquences de son handicap quels que soient
l'origine et la nature de sa déficience, son âge ou sonmode de vie. Désormais c'est le projet de vie de la
personne qui est mis en avant. En fonction de celui-ci,
un plan de compensation est élaboré et concrétisé par la
prestation de compensation (qui remplace petit à petit
l'ACTP et l'ACFP). Elle permet de couvrir les besoins enaides humaines et techniques, l'aménagement du
logement, du véhicule, les aides spécifiques ou
exceptionnelles, et les aides animalières.
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2005 law -- education
Scolarité
La principale innovation de la loi est d'affirmer que tout enfant, tout adolescent
présentant un handicap ou un trouble invalidant de la santé est inscrit dans l'école de
son quartier. Il pourra ensuite être accueilli dans un autre établissement, en fonction
du projet personnalisé de scolarisation. Les parents sont pleinement associés aux
décisions concernant leur enfant. Sont mis en place les équipes de suivi de la
scolarisation et les enseignants référents.
La loi réaffirme la possibilité de prévoir des aménagements afin que les étudiants
handicapés puissent poursuivre leurs études, passer des concours, etc.
Retour index Haut
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2005 law -- citizenship
Citoyenneté
La loi aborde aussi la question du droit de vote des majeurs placés sous tutelle (qui
peuvent être autorisés à voter par le juge des tutelles) ainsi que l'accessibilité des
bureaux de vote.
La question du handicap sera aussi abordée pendant les cours d'éducation civique à
l'école primaire et au collège. La loi apporte des précisions en matière de communication devant les juridictions
administratives, civiles et pénales, et lors du passage du permis de conduire pour les
personnes sourdes.
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2005 law -- accessibility
Le principe d'accessibilité pour tous, quel que
soit le handicap, est réaffirmé. Les critères
d'accessibilité et les délais de mise en
conformité sont redéfinis. Ainsi lesétablissements existants recevant du public et
les transports collectifs ont dix ans pour se
mettre en conformité avec la loi. Celle-ci prévoit
aussi la mise en accessibilité des communes etdes services de communication publique.
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2005 law -- resources
La loi a aussi instauré deux nouveaux compléments à
l'Allocation Adulte Handicapé : le complément de
ressources et la majoration pour la vie autonome. Les
bénéficiaires de l'allocation supplémentaire du Fonds
spécial invalidité peuvent aussi bénéficier de ces
compléments sous certaines conditions.
De même, la loi améliore le cumul de l'AAH avec un
revenu d'activité en milieu ordinaire, ainsi que la
participation aux frais d'hébergement pour les personnesaccueillies en établissement.
L'Allocation d'Education Spéciale (AES) est renommée :
« Allocation d'éducation de l'enfant handicapé »
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2005 law -- employment
Emploi
L'obligation d'emploi est toujours de 6 %.
Les entreprises qui emploient des personnes lourdement
handicapées pourront bénéficier d'une aide à l'emploi ou d'une
modulation de leur contribution. La loi réforme aussi le travail en milieu protégé :
Les ateliers protégés sont renommés Entreprises adaptées et
sortent du milieu protégé. Ce sont désormais des entreprises du
milieu ordinaire ayant pour vocation d'employer en priorité des
personnes handicapées. La rémunération minimum est basée sur leSMIC.
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2005 law
Aussi:
la reconnaissance de la langue des signes française comme une langue à
part entière,
les critères d'attribution de la carte de stationnement,
une nouvelle dénomination de carte station debout pénible (carte priorité
pour personnes handicapées),
la majoration pour parents isolés d'enfants handicapés,
l'agrément Vacances adaptées organisées »,
l'accès aux lieux ouverts au public pour les chiens guides d'aveugle ou
d'assistance
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Timeline
Date U.S. France
18th c. Schools for the Deaf and
Blind
Schools for the Deaf and
Blind
Late
18th c.
Revolution French Revolution ± equal
rightsMid-
19th c.
Compulsory education Compulsory education,
differences to be confined to
private sphere
Late
19th c.
Work-related accidents law
Aid for eldery, crippled,
incurable
Post-
WWI
Veteran¶s rights to
rehabilitation and
compensation
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Timeline
Date U.S. France
1920s Fédération nationale des
mutilés et invalides du travail
which goes on to apply to all
disabled
1935 Social security
WWII
1943 Under vichy, « conseil
technique de l¶enfance
déficiente et en danger moral »
1945 Sécurité sociale
1950s Associations funded by the
French State
1970s 1973 law 1975 law
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Timeline
Date U.S. France
1970s Militant movement linked to
civil rights movements,
independent living
Militant movement linked to
1968 movements, but is in
conflict with existing
associations
1980s Militant movements
1990 Americans with
DisabilitiesAct ± rights, non-
discrimination
2005 2005 law