Marcia RiouxProfessor & Graduate Program Director,

M.A., PhD (Critical Disability Studies)York University, Toronto Canada

mrioux@yorku.cadrpi@yorku.ca

D.R.P.I. Session Rehabilitation International World Congress

August, 2008

Disability Rights Promotion International:

A Holistic Approach to Monitoring the Human Rights of People with Disabilities

in the Global World

RAISING AWARENESS THAT DISABILITY IS A HUMAN RIGHTS ISSUE

IS AN IMPORTANT FIRST STEP

“ In all societies of the world there are obstacles preventing

persons with disabilities from exercising their rights and

freedoms, and making it difficult for them to participate fully

in the activities of their societies.”

Bengt Lindqvist (U.N. Special Rapporteur on Disability (1994-2002)

EU Conference on Disability, November 2006

Holistic Monitoring Builds in a way to measure the Gap

Government policies, programs and constitutional guarantees and…

The realities for people with disabilities who continue to live without their human rights.

U.N. Special Rapporteur Recommends Twin-Track Approach

“ Mainstreaming and a convention should be seen

as complementary approaches and a ‘twin-track’

approach should be applied in the field of human

rights and disabled persons.”

Bengt Lindqvist

U.N. Special Rapporteur on Disability (1994-2002)

“Almåsa Seminar”November 2000:

International Seminar

“Let the World Know”

recommends establishing an international disability rights monitoring system

Disability Rights Promotion International

DRPI is a collaborative project working to establish a comprehensive, sustainable international system to monitor human rights of people with disabilities.

Human Rights Principles

DignityAutonomy Non-discrimination & EqualityParticipation, Inclusion & AccessibilityRespect for difference

Cameroon

Addressing Disability Discrimination Worldwide

Cameroon

Kenya

What is monitoring?

The collection, verification and use of information to address human rights problems;

Involves researching, gathering, analysing, and reporting information;

With the purpose of identifying human rights abuses and violations and support efforts to remedy them;

Monitoring is intended to bring about social change: recommendations for law and policy development

Monitoring is an Empowering Activity

Provides a voice to marginalized people;

Enhances public awareness by documenting abuses and violations;

Reinforces a collective identity among persons with disabilities;

Supports efforts to achieve social justice

Monitoring is ……

measuring progress toward justice for people with

disabilities.

DRPI Monitors Disability Discrimination Worldwide

Africa South AmericaAsiaNorth America

AfricaSouth America

North AmericaAsia

DRPI Guiding Principles

• Leading role of People with Disabilities & their Organizations

• Sustainability and Capacity Building• Cross-Disability Involvement• Holistic Monitoring: Integrating 3

monitoring information from 3 areas• Engagement with Multi-Sectoral

Organizations

Holistic Approach to Disability Rights Monitoring

Holistic approach examines 3 monitoring areas providing a broad picture of human rights situation of people with disabilities.

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ExperiencExperiences es

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Societal Attitudes

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SystemsSystems

HOLISTIC MONITORING

1. Monitoring Systems

Fact finding about government laws, policies, programs and legal cases

• Legal Education & Research• National Human Rights Cases• Strategic Disability Rights Litigation

On-going systemic monitoring in Australia, Bolivia, Canada, India, Kenya, U.S.A.

Monitoring Systems

Places individual stories in context; Involves the investigation of the laws,

policies and programs affecting people with disabilities in a particular jurisdiction;

Serves to determine whether legislative frameworks in place fail to respect and protect the human rights of disabled people, or even violate them by containing discriminatory dispositions

Monitoring Systems

Case Law* decisions of courts of law,

national human rights institutions and other judicial

bodies

Policies * government

strategies setting out important

guiding statements but not necessarily

binding in law

Legislation* constitutions,

statutes & codes

Programs & Disability Benefit

Plans*measures enabling implementation of policy & legislative

directives

Monitors Ask: 1. Do they protect, promote

& fulfill disability rights? 2. Are government and

other public actors using a “disability lens” for both process & substance?

DRPI Law and Policy Monitoring Template Principles and Concepts

Right to Access to Justice

Rights to Information and Communication

Rights to Privacy and Family Life

Rights to Independent Living and Participation

Right to Education

Rights to Income Security and Support Services

Rights to Health, Habilitation and Rehabilitation

Right to WorkMonitoring Systems

DRPI Law and Policy Monitoring Template

Convention/Art

(1)

Question

(2)

Definitions and Requirements of the Question

(3)

Citation to

Relevant Documents

(4)

Other Source

s

(5)

Analysis/Justification of Score

(6)

Score

(7)

I. Principles & Concepts

ICRPD, 5.2, 3b

IACEDPD, 2, 3aSR, Pr, 14, 15ICCPR, 2,3,26ICESCR, 2CERD, 5CEDAW, 2ECHR 14, P12 -1ACHR, 24ACHR-PSS, 3

Does the State Constitution or other appropriate legislation prohibit discrimination on the grounds of disability, including denial of reasonable accommodation?

Y N

“Prohibition of discrimination” is defined on the UN Disability Convention as “any distinction, exclusion or restriction on the basis of disability which has the purpose or effect of impairing or nullifying the recognition, enjoyment or exercise, on an equal basis with others, of all human rights or fundamental freedoms in the political, economic, social, cultural, civil, or any other field”.

4 Excellent3 Fair2 Poor1 No compliance or no law policy

Monitoring Systems

Partners in Monitoring Systems

Human Rights Organizations:Office of the UN High Commissioner for Human Rights

(Geneva)International Commission of Jurists (ICJ) (Geneva)Interights (England)Raoul Wallenberg Institute of Human Rights & Humanitarian Law (Sweden)

National Human Rights Institutions: Asia-Pacific Forum of National Human Rights

Institutions Canadian Human Rights Commission

Partners in Monitoring Systems: Canada

Government Departments & Agencies:ARCH – Legal Resource Centre for People with

Disabilities (Canada)Centre for Interdisciplinary Research in

Rehabilitationand Social Integration (Canada)

Office des personnes handicapées du Québec –Government of Quebec (Canada)

Office for Disability Issues – Government of Canada

Statistics Canada

2. Monitoring Individual Experiences

Fact-finding about peoples’ actual situations in their communities.

Disability and Human Rights Seminar, Nairobi, Kenya Involving representatives from 78

Burkina Faso, Cameroon, Ethiopia, Kenya, Morocco, Switzerland

Monitoring Individual Experiences:

To document individual experiences of exercise and denial of human rights;

The aggregate outcome of individual monitoring can reveal broader patterns of discrimination;

Individual interviews;

Monitors are persons with disabilities.

Monitoring Individual Experiences

The Interview Guide covers:

Socio-demographic variables (e.g. age, sex, type of disability, type of household, proximity of infrastructures in the community,..)

Experiences of access to, or denial of, human rights basic principles, and how interviewees dealt with them

Qualitative analysis of data on the basis of the DRPI coding scheme and supported by DRPI technical manuals

Monitoring Individual Experiences

Excerpt from the D.R.P.I. Interview Guide

[ Dignity ]

HOW did this situation make you feel and WHY? (For example, did you feel respected/not respected, ignored/cared for, worthy/unworthy?)

WHAT made you feel that way?

WHY do you think people treated you that way?

Monitoring Individual Experiences Reporting: an excerpt from State of Disabled Peoples Rights in Kenya,

2007:

“[the research] clearly indicates that experiences of oppression,

discrimination and violation of basic human rights pervade the lives of

many disabled people in Kenya. As it emerged from the stories gathered,

most people with disabilities, regardless of their age, gender, where they

live or their disability type, are prevented from making decisions on

issues that affect their lives. (…) They face prejudice and negative

stereotypes, and are excluded in a multitude of ways from their

communities and mainstream society. Viewed as a burden and a curse to

their families, they are regarded as second class citizens. Their dignity, as

members of the human family, is seriously affected.”

Disability and Human Rights Seminar Nairobi, Kenya

Technical Skills

Learning How to Monitor:Obtaining consentInterviewing techniquesGetting all the factsSnowball samplingTaking notes & recordingMaintaining confidentiality

Monitoring Individual Experiences

Essential Principles

All reporting documents and practices must be user-friendly.

Involvement of people with disabilities is necessary and essential.

Monitoring Individual Experiences

Monitoring in Teams of People with Disabilities

Builds solidarity Builds capacityFosters

sustainability

Monitoring Individual Experiences

Lake Nakuru National Park, Kenya

DRPI – KENYAIndividual Disability Rights Monitor

Training February, 2006

Monitoring Sites:Nairobi (urban)Rift Valley (urban & rural)Nyanza (urban & rural)

Monitoring Individual Experiences

DRPI - KENYA

Partners:African Union of the Blind (AFUB)Kenya Union of the Blind (KUB)Kenya Centre for Disability Rights Education &

Advocacy (CREAD)University of Nairobi, Faculty of LawSwedish Association of the Visually Impaired

(SRF)

Monitoring Individual Experiences

Kenya

Kenya

DRPI – CAMEROON Individual Disability Rights Monitor

Training October, 2006

Monitoring Sites:Yaoundé (urban)Menoua Division (rural)Bamenda (urban)

Monitoring Individual Experiences

DRPI – CAMEROONPartners:

African Union of the BlindCameroon National Association of the BlindCameroon National Association of Disabled

CameroonNational Association of the DeafCameroon National Association of Lepers Cameroon National Association of the

Physically DisabledCameroon National Commission on Human

Rights and Freedoms

Monitoring Individual Experiences

Kenya

Countryside near Nairobi

Cameroon

Cameroon

Cameroon

Cameroon

Cameroon

Workshop on Understanding Human Rights of Persons with Disabilities

India

September, 2006

Monitoring Individual Experiences

India

DRPI - INDIAIndividual Disability Rights Monitor

Training May, 2007

Monitoring Sites:Hyderabad (urban)Kurnool (town)Villages in Visakhapatnam District (rural)

• Thokuru Village (Ananthagiri Mandal)• Konapuram (Ananthagiri Mandal)• Kondiva (Ananthagiri Mandal)• Malchingaram (Araku Mandal)

Monitoring Individual Experiences

India

India

DRPI - INDIAPartners:

Swadhikaar Center for Disabilities Information, Research & Resource Development

Asmita Resource Centre for WomenNALSAR School of LawNational Institute for Mental HandicapLeonard Cheshire International South-Asia

RegionAP State Legal Services Authority

Monitoring Individual Experiences

India

India

DRPI Bolivia Individual Disability Rights Monitor

Training July, 2008

Monitoring Sites:Santa Cruz (urban)Provincia Obispo Santistevan (rural)La Paz (urban) Provincia El Alto (rural)

Monitoring Individual Experiences

DRPI Bolivia Partners:

Confederación Boliviana de Personas con Discapacidad

Federación Cruceña de Personas con Discapacidad (FECRUPDI) - Carlos Loli Cortez Vasquez

Federación Departamental de Personas con Discapacidad (FEDEPDI) -Teclo Gonzales Puquimia

Monitoring Individual Experiences

Bolivia

Bolivia

Bolivia

DRPI – CANADAPartners:

national & local organizations of people with disabilities

individual disability rights experts (academics, independent researchers, lawyers)

human rights NGOs universitiesgovernment offices for disability issuesdisability & human rights research institutes

Newfoundland, Canada

Quebec City, Canada

Toronto, Canada

DRPI – CANADAOrganizational Partners:

Amnesty International ARCH - A legal resource centre

for persons with disabilitiesCanadian Abilities Foundation Canadian Association of

Independent Living Centres Canadian Human Rights

CommissionCentre interdiscipinaire de

recherche en réadaptation et intégration sociale

Council of Canadians with Disabilities

DisAbled Women's Network Ontario

Equitas Institute for Social Research,

York UniversityOffice des personne

handicapées du Québec Office for Disability Issues,

Government of CanadaRaoul Wallenberg Institute of

Human Rights & Humanitarian Law

Université de LavalUniversity of VictoriaYork University

3. Monitoring Societal Attitudes

Fact finding about societal attitudes to disability and people with disabilities by monitoring media coverage and depiction.

Media:reflects & influences public opinion is a proxy

for societal attitudes

Media can:perpetuate negative myths & stereotypes

But media can also:be a catalyst for positive social change

Monitoring Societal Attitudes

Media Monitoring Monitoring media coverage and depiction of

disability

Quantitative analysis: e.g. number and format of publications per day, their placement (what section, where in section), types of disability covered and sources used;

Qualitative analysis: content analysis and critical discourse analysis (e.g. language and presence of stereotypes, way sources are used, visual images used, how and why)

Monitoring Societal Attitudes

gather 1000s of disability-related media reports from the internet including:

radio and television broadcastsnewspaper, magazine and internet articles

use neural networks, content analysis and critical discourse analysis to conduct quantitative and qualitative analyses of the stories.

analyses conducted by collaborative research team from disability community, media and academia

Monitoring Societal Attitudes

Media Monitoring

Researchers& Panel of

experts (PE)

Search string Neural networks

Dendograms(association of

terms)

New search string

Media sample

Content analysis

General pictureDetect patterns Discourse analysis

refine search string

PE feedback

PE and disability community feedback

Media Monitoring Methodology Loop

Partners

Researchers from University of Buffalo, U.S.A. and Umeå University, Sweden and York University, Canada

International Panel of Experts (Canada, Costa Rica, India, Kenya, New Zealand, Sweden and U.S.A.)

Monitoring Societal Attitudes

Holistic Approach to Disability Rights Monitoring

Holistic approach examines 3 monitoring areas providing a broad picture of human rights situation of people with disabilities.

MonitorinMonitoringg

IndividuaIndividual l

ExperiencExperiences es

Monitoring

Societal Attitudes

MonitoriMonitoringng

SystemsSystems

HOLISTIC MONITORING

Results of Holistic Monitoring

Individual Country Reports Identification of gaps among individual

experiences, government promises and societal dialogue

Teams of people with disabilities ready to monitor rights on an on-going basis

International comparative data

THANK YOU to the following Funders:

Swedish International Development Cooperation Agency (Sida)

Social Sciences and Humanities Research Council of Canada (SSHRC) Community-University Research Alliance (CURA)

SSHRC (International Opportunities Fund)Heritage CanadaAustralian Research Council Swedish Association of the Visually Impaired (SRF)York UniversityUniversity of BuffaloLaval University