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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