Understanding Disability- Report

Understanding Disability:

Attitude and Behaviour Change for

Social Inclusion

Understanding Disability:Attitude and Behaviour Change for Social Inclusion

Publishers : UNNATI - Organisation for Development Education andHandicap International

First edition : 2004

No. of copies : 250

Illustrations : Satpal Singh, Ranjit Balmuchu

Layout and design : Rajesh Patel

Printer : Bansidhar Offset, Ahmedabad

The text of this booklet is available on a larger font size on request.

Any part of this publication may be used as training or educational material with dueacknowledgement to the publishers.

Acknowledgements

This research study was carried out by UNNATI - Organisation for DevelopmentEducation and Handicap International (HI) in 4 districts of Gujarat namely Ahmedabad,Sabarkantha, Patan and Vadodara, in collaboration with 13 grass root partnerorganisations. We sincerely express our thanks and gratitude to all those who havegiven their valuable time, inputs and suggestions for conducting the research andputting this report together.

We would especially like to thank Prof. Ajit Dalal, Reader at the Department ofPsychology, University of Allahabad and Dr. Maya Thomas, Consultant, for theirinvaluable support and guidance not only in preparing the design of the study but inthe entire research process. This study would not have been possible without theinvolvement of the 13 partner organisations and their efforts to facilitate the processin their field areas. We are grateful to our colleagues Arindam Mitra, Amrut Rathod,Hitendra Chauhan and Swati Sinha of UNNATI and Sonia Lokku, Snehal Soneji andHetal Thaker of HI for their inputs in the study process. We also sincerely acknowledgethe time spent and the interest shown by the members of the community where thestudy was conducted. This has contributed to developing a collective understandingof the situation of persons with disabilities, causes of their exclusion and measuresthat can promote their inclusion in society.

Preface

During the Gujarat earthquake rehabilitation response UNNATI - Organisationfor Development Education and Handicap International closely understood theneeds of vulnerable groups, particularly the orphans, single women, widows andpersons with disabilities who struggled to get included in the rehabilitationprocess. The families of persons with disabilities became more vulnerable.

This booklet is an outcome of the joint initiative of Handicap International (HI)and UNNATI in vulnerability reduction. It aims to invoke the participation of civilsociety in the inclusion of persons with disabilities in the mainstreamdevelopment process. The assumption was that an oriented and sensitised civilsociety would create an enabling environment for enhancing the participationof persons with disabilities in the development process and for engaging themin decision making on issues concerning them.

A participatory action research was initiated in 4 districts of Gujarat, namelyAhmedabad, Sabarkantha, Patan and Vadodara during January 2003 - April 2004in partnership with local NGOs. Along with the study, several activities, includingtraining, workshops and preparation of educational material were also initiatedto orient the partner organisations and sensitise the community. This reportpresents the process as well as the key findings of the study. The study itselfled to a campaign for sensitising civil society.

We hope that the findings of the study will enhance the understanding of thesituation and context of persons with disabilities among those who desire to workfor their inclusion. We also hope that this report will provide an impetus to theinitiatives, which focus on creating an enabling environment for the inclusion ofpersons with disabilities in development processes, and will motivate severalgroups in society to act and contribute to enable persons with disabilities to leada life of dignity.

The text of this report has been prepared by Alice Morris, Geeta Sharma andDeepa Sonpal from the field notes prepared by Shankharupa A. Damle andArchana Shrivastava.

Binoy Acharya Alana OfficerUNNATI Handicap International

List of Abbreviations

ADA American Disability Act, 1991

ADD Action on Disability and Development

BPA Blind People’s Association

CBO Community Based Organisation

CBR Community Based Rehabilitation

DDRC District Disability Rehabilitation Centre

GHFDC Gujarat Housing and Finance Development Corporation

GOI Government of India

HDI Human Development Index

HI Handicap International

ICDS Integrated Child Development Scheme

ID Identity Card

IEC Information Education Communication

NAB National Association for the Blind

NCPEDP National Centre for Promotion and Employment of DisabledPersons

NHFDC National Housing and Finance Development Corporation

NSS National Sample Survey

ONGC Oil and Natural Gas Corporation

PHC Primary Health Centre

PRI Panchayati Raj Institution

PWD Act, 1995 Persons with Disabilities (Equal Opportunities, Protectionof Rights and Full Participation) Act 1995

SC Scheduled Caste

SDO Social Defence Officer

SHG Self Help Group

ST Scheduled Tribe

ULB Urban Local Body

WG Women’s Group

WHO World Health Organization

YG Youth Group

Anganwadis Run under ICDS, provides supplementary nutrition andinformal education to children.

Census 10 yearly enumeration of population.

Dai Mid wife facilitating child birth at home.

Gram Sabha Consists of all the voters of Village Panchayat.

ICDS Centrally Sponsored Scheme implemented by the StateGovernments. Provides for nutrition for children under 6and pregnant women and pre-school education.

Mahila Arthik Vikas Nigam State-run corporation, working for economic empowermentof women.

NSS Central Organisation conducting yearly socio-economicsurveys.

Panchayat Local self government at Village, Taluka and District levels.

PHC Primary Health Centre responsible for providing primaryhealth care at village level.

Sarpanch Head of the Village Panchayat.

SC Scheduled Castes. Provided political reservation under theIndian Constitution. Lies at the lowest strata in castesystem.

SDO Social Defence Officer, district level administrative headresponsible for implementation of various social securityschemes.

SHG Group of persons engaged in economic activities of savingsand credit as well as production and sale.

Snellen Is a chart which measures the visual acuity of a person.

Special educators Educators specially trained for educating persons withdisability

ST Scheduled Tribes known as tribals mainly living in hillyareas, known as Scheduled areas.

Talati A person working as a secretary of a Village Panchayat.

Taluka An intermediate administrative division between VillagePanchayat and District Panchayat.

Glossary

List of Partner Organisations

Ahmedabad Study Action GroupIn front of Hasanali School, Khodiar Chowk, Dholka, Ahmedabad-387 810.

Bhansali TrustHighway Char Rasta, Radhanpur, Patan-385 340.

Gram Vikas Sewa TrustKharid Vechan Sangh, 1st Floor, S T Road, Idar, Sabarkantha-383 430.

Faculty of Social WorkM S University, Opp. Fatehganj Post Office, Vadodara-390 002.

Lok Seva Yuva TrustDaramali, Taluka Idar, Sabarkantha-383 110.

PARAKH TrustAmbawadi Vistar, B/h. Kutchi Samaj Wadi, Nr. Bungalow No. 12, Opp. RailwayStation, Himmatnagar, Sabarkantha-383 001.

Rural Development SocietyAt & P.O Zinzawa, Taluka Prantij, Sabarkantha.

SAATH Charitable TrustO/102, Nandanvan V, Near Prernatirth Derasar, Jodhpur, Satellite,Ahmedabad-380 051.

Sarvodaya Mahila Jagruti Seva TrustAt P. O. & Taluka Vadali, Sabarkantha-383 235.

Shri Ambedkar Education TrustKump. Post. Jambudi, Taluka Himmatnagar, Sabarkantha-383 001.

Shramik Vikas Seva SansthaOpp. Taluka Panchayat Office, Bhiloda, Sabarkantha-383 245.

Vikas Jyot TrustNagarvada Char Rasta , Vadodara-390 001.

Vinoba Bhave Seva SansthanSector 2/76, Samay, Mahakali Kanknol Road, Gayatri Mandir Vistar,Himmatnagar-383 001.

Preface

List of Abbreviations

Glossary

List of Partner Organisations

Executive Summary 1

1. The Context 5

2. Methodology and Process of the Study 10

2.1 Methodology 10

2.2 Inclusive Social Enquiry: Challenges 15

3. Barriers Faced by Persons with Disabilities 17

3.1 Types and Causes of Disability 17

3.2 Social Engagement and Needs 18

3.3 Economic Engagement 21

3.4 Special Needs 24

3.5 Access to Services 24

3.6 Social and Attitudinal Barriers 31

4. Way Forward - Action Points 34

5. References 40

Contents

In India, people with disabilities, especially those who are poor, suffer fromprofound social exclusion. This limits their participation in all spheres oflife – social, cultural and political and results in a denial of their rights. Womenwith disabilities suffer double discrimination on account of both disabilityand gender.

Yet, data base available in India provide a limited picture of the exclusionthat people with disabilities experience. For example, the very definition ofdisability, as accepted by law* , recognizes only seven kinds of peoplewith disabilities – those with blindness, low vision, leprosy-cured, hearingimpairment, locomotor disabilities, mental retardation and mental illness. Itleaves out many types of disability such as haemophilia and AIDS. Thisvaried understanding of disability is only the beginning of the problemsassociated with obtaining a thorough understanding of disability in India.

The participatory research and action study

In 2003, UNNATI - Organisation for Development Education and HandicapInternational (HI), in partnership with thirteen grassroot organisations,designed a participatory research and action study to gather a collectiveunderstanding of the needs, potential, rights and aspirations of personswith disabilities, as well as the prevailing attitudes, beliefs and behaviour ofthe community towards them. It also explored ways in which developmentstakeholders can play a supportive role in promoting inclusion of personswith disabilities in their ongoing activities. The study complements an overalleffort to promote civil society participation in mainstreaming people withdisabilities.

Using a participatory approach (PRA) to capture the point of view of peoplewith disabilities themselves, the study represents the voices of 1,154 peoplewith disabilities in 55 villages and 8 urban slums across four districts inGujarat – Ahmedabad, Sabarkantha, Patan and Vadodara. In mostcommunities, the study provided an opportunity for people with disabilitiesto interact with members of the general community on an equal platform forthe first time.

Executive Summary

* The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995

Executive Summary!"!1

2!"!Understanding Disability

The study focused on:• Building the capacities of the thirteen participating organisations to

conduct the study (developing manuals, questionnaires, and conductingdemonstrations as well as tracing the close link between poverty anddisability)

• Engaging women in all discussions (holding separate focus groupdiscussions with women with disabilities where they were notcomfortable with sharing their thoughts and feelings in the larger group)

• Including all stakeholders from the community in discussions, especiallythose in a position to influence the increased participation of personswith disabilities in the development process

• Acknowledging challenges (the study offered no ‘tangible’ benefits topeople with disabilities participating in the exercise)

Summary of Findings

Profound exclusion: Overall, the study revealed that for reasons of lackof access, stigma and poverty, persons with disabilities were forced tospend their lives in seclusion and isolation. Their needs, aspirations andpotential were hidden because they lacked the opportunity to interact withthe larger community, who in turn expressed their lack of information onhow to relate/interact with people with disabilities.

Mobility, access and social participation:Mobility was restricted for all people withdisabilities due to barriers in the physicalenvironment and dependence on friends andrelatives, who were not always around toassist them. They also experience ‘socialrestrictions’ on their mobility. For example,persons with disabilities were barred fromattending social functions such as marriages,but they were not stopped from attendingreligious functions. Women with disabilities(and their families) reported feeling highlyinsecure about moving outside on their own,which doubly restricted their mobility.

Family life: More men with disabilities were married, a large section ofwhom were able to find non-disabled partners. Women with disabilities onthe other hand, were more often single or married to another person withdisability.

Rehabilitation needs and services: The study reveals that the generalneeds of persons with disabilities are similar to those of non-disabledpersons. For example, their experience of poverty is the same as that of

Data map: In the samplesurveyed, there were moremen (60%) than women(40%) with disabilities. Thelargest number of personswith disabilities was foundin the school going age(6-18 years). Most of themwere disabled from birth(54%). Physical disability,due to its apparent nature,accounted for 62% of thecases surveyed.

non-disabled persons and they seek to reduce their poverty in a similarmanner. In addition, however, they have special rehabilitation needs suchas aids and appliances to overcome the limiting effects of their impairment.This places a double burden on them.

Public health services: Inadequate primary healthcare services increaseshealth risks for persons with disabilities. The study reveals that 27 per centof disabilities were caused due to poor medical services provided,especially at the village level. Medical professionals were perceived asbeing inadequately trained in early identification and treatment of disabilitiesespecially mental illness and mental retardation. Besides access to healthservices, access to other basic services like transport, proper roads,telephone booths were limited, making it almost impossible to reach thenearest town to seek medical help.

Access to Rights: Overall, awareness of rights was fairly low amongstpeople with disabilities in the areas surveyed. About 30 per cent of peopledid not even own a disability certificate, the precondition for obtaining benefitsand services from the State. They reported physical barriers andcumbersome procedures as obstacles for accessing these services.

Livelihoods: The study reveals that in the peak earning age group between18-45 years, 93 per cent of people with disabilities have not received anyincome generation or vocational training. Even if they did have stereotypedskills of basket making, weaving, embroidery they were not able to meettheir financial needs. More women with disabilities (84 per cent) were foundto be engaged in household chores as well as in agriculture or tailoring asopposed to men with disabilities.

Education: Communities reported a high drop out rate of children withdisabilities from schools. Girls with disabilities dropped out more frequentlythan boys due to several reasons including vulnerability to abuse andexploitation, lack of proper accessible toilets and the prevailing social beliefthat it is not worth investing in education for girls.

Mainstreaming persons with disabilities: The study found that theattitudes and behaviour of others – family, friends, and society – can becomea barrier to the participation of people with disabilities in society. Equallyimportant is the way that persons with disabilities perceive themselves. Apositive attitude on both sides can inculcate a sense of confidence andgenerate the support provided/received, improving the quality of life ofsociety as a whole.

This participatory research and action study facilitated a process by whichthe attitudes of the community towards persons with disabilities were openly

Executive Summary!"!3


discussed and various stakeholders committed to include them in their on-going activities as a first step towards inclusion. The village headman(sarpanch) in 75 per cent of villages expressed a willingness to includethem in the village meetings (gram sabhas) and said that the villagegovernment body (panchayat) would take responsibility for attending tothe special needs of people with disabilities. Other village institutions suchas youth co-operatives, community-based organisations and self helpgroups also expressed an interest in sharing this responsibility, especiallyin facilitating the disability certification process.

The study clearly revealed that non-disabled people were not insensitiveto the issues faced by people with disabilities, but largely ignorant aboutthem. This in turn affected their ability to respond appropriately. With greaterawareness about these issues came a greater willingness to encouragetheir participation in society. Building trust and positive attitudes is thereforethe key starting point for any mainstreaming initiative.

A person with disability is one withphysical and/or intellectual impairment dueto disease, genetic factors, trauma,malnutrition or accident. But disability isnot merely an isolated health issue for aparticular individual. It also has distinctsocial implications. Disability is theoutcome of complex interactions betweenthe functional limitations arising from aperson’s physical, intellectual or mentalcondition and the social environment. Ithas many dimensions and is oftenassociated with social exclusion,increased vulnerability and poverty.

Traditionally, disability has been treated asa health and welfare issue, to beaddressed either by health officials orpersonnel specialising in the physicalrehabilitation of persons with disabilities.The very term ‘welfare provision’ deniesthose with disabilities the right to be treatedas fully competent and autonomousindividuals.1

The earliest efforts for rehabilitation ofpersons with disabilities focused oninstitution-based care and services forindividuals. Later, as the need for moreaccessible services became apparent,the scope for rehabilitation widened toinclude families of persons with disabilitiesand the rehabilitation of the person in his/her own community. As the understandingof the social nature of disability improved,

1 Oliver, Barnes, ‘Discrimination, Disability and Welfare: From Needs to Rights’ in ‘Disabling Barriers – EnablingEnvironments’, Sage Publications, 2003

2 Darnbrough, Ann, ‘Disabled Women in Society – A Personal Overview’

1. The Context

it was equally important to change theenvironment and context in which thepersons live. This includes protection oftheir rights, provision of equal opportunitiesin education and employment andpromoting community ownership ofprogrammes whose goal is the inclusionof person with disabilities.

It is necessary to acknowledge disabilityas a human rights issue.2 A humanrights-based approach to disability willensure that people are aware of personswith disabilities, their vulnerability and theirrights. Hence, the issue of disability needsto be viewed from a human rightsperspective to ensure that they can leada dignified life. Therefore, the role ofstakeholders like the State, developmentorganisations, community and civil societyin addition to special institutions isextremely important. A ‘rights-basedapproach’ is necessary to recognise‘disability’ as a development issue and forpersons with disabilities to become actorsand advocates for change.

Defining ‘Disability’Defining ‘disability’ is complex and oftencontroversial. There is confusion regardingthe terms ‘impairment’, ‘disability’ and‘handicap’ and when it is appropriate touse each of these terms. Disability isbroadly understood in a continuum asshown below:

Disease/Accident # Impairment # Disability # Handicap

The Context!"!5


Impairment can generate disability, whichin turn can generate a handicap. Ahandicap further leads to social andeconomic exclusion. Exclusion, intentionalor not, keeps increasing. The more theexclusion, the less aware is thecommunity of or concerned about theneeds and barriers faced by persons withdisabilities. This alienation leads to awidening gap in the understanding ofpersons with disabilities and their needsin day-to-day life.

Till date, most studies on the status ofdisability in India have concentrated onphysical disability. Professor Ajit Dalal inhis book ‘The Mind Matters: DisabilityAttitudes and Community BasedRehabilitation3 , comments that, “due to thelack of a clear definition of ‘disability’, theestimates of the number of disabled havewidely varied.” Dr. Uma Tuli, ChiefCommissioner for Persons withDisabilities, New Delhi, agreed in aninterview that the lack of consensus onthe definition of disability makes authenticdata on the issue very difficult to obtain.4

3 ‘The Mind Matters: Disability Attitudes and Community Based Rehabilitation’ published by Centre for AdvancedStudy, University of Allahabad, Sept. 2000. Professor Dalal is a Reader at the Department of Psychology, Uni-versity of Allahabad.

4 In an Interview for Labour File, Vol. 7, No. 10 & 11, Oct.-Nov. 2001.

The first major step towards recognitionof the rights of the persons with disabilitieswas the Persons with Disabilities (EqualOpportunities, Protection of Rights andFull Participation) Act, 1995 (PWD Act,1995), which was the result of severalyears of advocacy for an understandingof the issue.

The Act covers seven types of disabilities:blindness, low vision, leprosy cured,hearing impairment, locomotor disability,mental retardation and mental illness.Blindness means total absence of sight,visual activity not exceeding 6/60 or 20/200 (Snellen) in the better eye withcorrecting lenses or limitation of the fieldof vision subtending an angle of 20degrees or worse. Low vision means aperson with impairment of visualfunctioning even after treatment orstandard refractive correction but whouses or is potentially capable of usingvision for the planning or execution of atask with an appropriate assistive device.

The National Trust for Welfare of Personswith Autism, Cerebral Palsy, MentalRetardation and Multiple Disabilities Actwas enacted in 1999 for the protection ofrights of persons with the aforementionedconditions.

The District Disability Rehabilitation Centre(DDRC), Ministry of Welfare, Governmentof India (GOI), has a simple definition ofdisability – the opposite of ability. TheAmerican Disability Act5 , (popularlyknown as the ADA) 1991, definesdisability as any physical or mentalimpairment that results in a substantiallimitation of one or more major lifeactivities. This definition covers all typesof disabilities.

‘Disability’ is seldom seen as an importantsocial issue and persons with disabilitiesare often left out when vulnerable groupsare considered. The specific problemsconfronting persons with disabilities haverarely been explored, still less so fromtheir perspective. Their potentialcontribution to the community has alsobeen ignored.

5 American Disability Act www.disabilityinfo.org

The Context!"!7

Leprosy cured refers to a person who iscured of leprosy but is suffering from lossof sensation in the hands or the feet aswell as loss of sensation and paresis inthe eye and eyelid but with no manifestdeformity, and paresis but has sufficientmobility in the hands and feet to engagein normal economic activity; or extremephysical deformity as well as advancedage which prevent the person fromundertaking any gainful employment.Hearing impairment means loss of 60decibels or more in the better ear in theconventional range of frequencies.Locomotor disability means disability ofbones, joints or muscles leading tosubstantial restriction of the movement ofthe limbs or any form of cerebral palsy.Mental retardation refers to a condition ofarrested or incomplete development of themind of a person, which is speciallycharacterised by sub normality ofintelligence. Mental illness refers to anymental disorder other than mentalretardation. The Act, among otherprovisions, highlights the educational,economic and accessibility needs andrights of persons with disabilities.However, as Dr. Tuli admits, it still excludesmajor disabilities like autism and cerebralpalsy.


The World Development Report, theHuman Development Report and theAsian Outlook, the three major authoritieson international data published annually,have no data on the number of personswith disabilities in the countriesincluded in their studies. Even the muchproclaimed Human Development Index(HDI) does not include this verysignificant aspect of human life, which isan indication of the level of interest on theissues of persons with disabilities at theinternational level.

Statistics, however, do exist, althoughprimarily in industrialised countries, e.g. inthe United States, more than 8 per cent ofthe population are disabled; in Australia,the figure is 14 per cent. Among the Asiancountries, China claims a 5 per centdisabled population, Pakistan 4.9 per cent,the Philippines 4.4 per cent and Nepal 5per cent.

Status of Persons withDisabilities in IndiaIn India, national level statistics on thepersons with disabilities are not collectedregularly. Apart from a few sporadicstudies, there is no authentic source thatcan provide concrete, desegregated data.National and international sources quotedifferent figures. The higher percentage ofpersons with disabilities in developednations as compared to that in India ispartly due to the very narrow definition ofdisability used in India.

The National Sample Survey (NSS)figures of 1991 claims that about 1.9 percent (16.2 million) of the total population

of the country has physical or sensorydisabilities. According to estimates by theNational Centre for Promotion andEmployment of Disabled Persons(NCPEDP), this number is more likely tobe between five and seven per cent6 .World Health Organization’s (WHO)estimate is between five and six per centwhile other UN organisations put the figureat as high as 10 per cent.7

Since Independence, the first Census thatconsidered disability was in 1981. In the1991 Census, the issue was againignored. In 2001, after intense lobbying,one question on disability was added tothe Census. The data has just beenreleased. The Census of India 2001 givesan estimate of 2.2 per cent of thepopulation as persons with disabilities inIndia of which 1.6 per cent is in urbanareas and 0.6 per cent in rural areas.

Women with DisabilitiesWomen as a group are vulnerableregardless of the caste, class and religionto which they belong. Undoubtedly,several problems concerning girlsand women with or without disabilitiesare common. Disability adds to thisvulnerability and aggravates thesituation.

Women with disabilities are notconsidered able enough to fulfil the role ofa homemaker, wife and mother andconform to the stereotype of beauty andfemininity in terms of physical appearance.Women with disabilities are looked downupon not only by their communities but alsoby their families.

6 NCPEDP: Bare Facts, www.ncpedp.org7 E. Helander, ‘Prejudice and Dignity: An introduction to Community-based Rehabilitation’, UNDP, 1982. One in 20

is a conservative figure with some sources suggesting that 1 in 10 of the world’s population may be defined ashaving a disability.

The most vulnerable and neglected amongwomen are therefore those who aredisabled. Women with disabilities sufferdouble discrimination, both on the groundsof gender and impairment. They not onlyface the normal difficulties disabilityimposes, but also are socially excluded.However, there are very few disabilitystudies that focus on the experiences ofwomen with disabilities. As in many other

research studies, general conclusions aredrawn based on data obtained primarilyfrom the experiences of men. While menwith disabilities have specific and validconcerns, the same is true for women withdisabilities. As such, special needs ofwomen have long been neglected andthere is a need to have an understandingof disability issues from a woman’sperspective.

The Context!"!9


UNNATI - Organisation for DevelopmentEducation and Handicap Internationalundertook a joint initiative on ‘Enhancingthe participation of civil society inmainstreaming persons with disabilities inthe development process’. It seeks toprovide information and change theattitudes among the various actors of civilsociety so as to facilitate full participationof persons with disabilities in the processof development. The wider aim of theproject is to include persons withdisabilities in the mainstream by (a)creating awareness on the need andmeasures to promote inclusion of personswith disabilities, (b) identifyingstakeholders in civil society who can playa critical role in inclusion, (c) orienting themto issues of disability and the role they canplay, and (d) establishing linkages andnetworks among various stakeholders.

The present participatory action researchstudy was undertaken as an integral partof this project and aims to develop a betterunderstanding of the needs, potential andrights of persons with disabilities inGujarat. It also tries to explore the waysin which various stakeholders cancontribute in making public spaces barrierfree, enhancing the access of personswith disabilities to government schemes,services and other facilities and includingthem in their ongoing activities.

Efforts have therefore been made todefine ‘disability’ in its local context that

varies from village to village, dependingon the existing culture. This study alsooffers a synthesis of the views andexperiences of persons with disabilitiesthemselves through formal and informalgroup discussions. Emphasis has beenplaced on understanding the issues ofwomen with disabilities.

2.1 MethodologyThe study was designed as an action-research project using participatoryresearch methods as well as thequestionnaire survey method. TheParticipatory Rural Appraisal (PRA)process raised awareness in thecommunity about the rights and potentialof persons with disabilities and exploredthe role of various stakeholders to achievethe overall goals of the project. Mostimportantly, the persons with disabilitiesparticipated actively and decisively alongwith other members of the community forthe first time to examine the issues relatedto disability.

The study was carried out in partnershipwith 13 organisations working in fourdistricts of Gujarat, namely Ahmedabad,Patan, Sabarkantha and Vadodara, andcovered a total of 7 talukas, 55 villagesand 8 urban slum areas.8 A team thatincluded members from par tnerorganisations, UNNATI and HI, conductedthe study. This team was oriented andsensitised to the methodology and theissue before undertaking the exercise.

2. Methodology andProcess of the Study

8 The partner organisations selected three to five villages from their work area for undertaking the study,depending on the time and resources available to them.

Participatory methods were used todevelop a joint understanding of thedisability issues. This was followed by aquestionnaire based survey. A total of1154 persons with disabilities weresurveyed who were identified by thecommunity or by themselves as personswith disabilities during the PRA. The PRAmethods used included Transect walk,Social mapping, Mobility mapping, Venndiagram, Stakeholders’ meet and Focusgroup discussion. Interactions betweenpersons with disabilities and thecommunity in an open environment helpedexplore many interpersonal perceptionson the issues, which were rooted inignorance about each other and lack ofinteraction based on concepts of equalityand respect.

The qualitative and quantitative data wereseparately analysed and used to look atvarious aspects of the life of a person withdisability. The data was shared withpartner organisations through workshopsto ensure that information, particularly thequalitative aspects, were not missed outin the process of analyses anddocumentation.

Some of the key steps followed in thestudy are as follows:

(i) Orientation of Community BasedOrganisationsDuring our work in earthquake-affectedareas, it was realised that developmentorganisations need to interface withpersons with disabilities in their ongoingwork. Development organisations have amajor role to play in mainstreamingdisability. Poverty and vulnerabilityreduction initiatives often lacked a strongunderstanding of the issues of personswith disabilities. The participation of

persons with disabilities was severelylimited and constrained in many waysleading to the intervention being welfareoriented rather than rights based.

Given this context, a workshop wasorganised to dialogue with the communitybased organisations (CBOs) working onvulnerability reduction. The objective wasto build a collective understanding on theissues of persons with disabilities.Altogether 16 CBOs attended thisworkshop.

During the consultation with the CBOs, itwas felt that the use of PRA methods aswell as conventional methods (quantitativemethods) would enhance theunderstanding of the issues. It was alsofelt that the research study itself wouldraise awareness of the community on theissues, rights, aspirations and potential ofpersons with disabilities. It would alsoprovide them a platform to express theirneeds, views and perceptions.

(ii) Designing the StudyThe next step was designing the steps forthe participatory action research. Many ofthe organisations had used PRA as a toolwhile addressing other issues. However,using PRA for understanding disabilityissues was new. Therefore the plan wascollectively evolved.

PRA tools that were to be used during thestudy were outlined. A manual withguidelines for using each tool wasprepared. It included the objective forusing each tool, the procedures and theinformation to be collected through the useof the tool. It also provided a list of do’sand don’ts for undertaking participatoryresearch. As part of designing the study,a pilot PRA was undertaken in one village

Methodology and Process of the Study !"!11


of Dholka taluka of Ahmedabad district.This helped in finalising the tools to beused and designing a questionnaire forcollecting quantitative data. Mostimportantly, it provided an opportunity forthe group to arrive at a commonunderstanding on how to use PRA toolsfor addressing disability issues.

The nature and scope of the study andthe sample was discussed individuallywith each organisation and also in thegroup. Each organisation selected thesample area according to their fieldactivities. 3-5 villages from their work areawere selected for undertaking the studybased on the time and resources availablewith them.

(iii) Field Level Activities(a) Demonstration of ToolsTo further build the capacity of theresearch team of all the organisations ademonstration of tools was organised. Ateam from UNNATI and HI visited eachorganisation and, along with a 2-3 memberresearch team conducted the first PRAin one village selected by them. Theparticipants were introduced to PRA tools.This was followed by a visit to the village.The team stayed in the village for threedays and demonstrated each tool and builtan understanding of how each tool couldbe used to collect and collate data as wellas created awareness among thecommunity on the issues. At the end ofeach day, the team reviewed theinformation collected and the tools used.This helped in refining the process further.

(b) Conducting the PRAsThe PRAs helped collect informationthrough interaction with the communityand persons with disabilities. It helped inexploring the needs and potential ofpersons with disabilities by listening to

their views and ascertaining their specificproblems.

The participatory methods used includedTransect walk, Social mapping, Mobilitymapping, Venn diagram, Stakeholdersmeeting and Focus group discussion.

Transect walk through the village helpedthe team to get familiar with the village andserved as an entry point. The existingservices and facilities, settlement patternof the village, existing trades, croppingpattern, social and economic status andother specific aspects of the village weredocumented through observation andinformal dialogue with the communityduring the transect walk.

The community prepared the social mapof the village. It helped in developing acomprehensive understanding of theeconomic, social and physical aspects ofthe village. This exercise helped inidentifying the houses of persons withdisabilities. It initiated a process wherebythe community started reflecting upon thesituation of the persons with disabilities intheir area and their specific needs andabilities. Many persons who were notrecognised as persons with disabilitieswere identified during the process.

The mobility mapping exercise carried outwith the persons with disabilities and thecommunity helped to collect details onservices that are available to the personswith disabilities within the village and theclosest point to access services that arenot available in the village.

The Venn diagram was used in identifyinginstitutions existing at the village level andalso in developing an understanding of thecommunity ’s perception and theirexpectation from these institutions. It

helped to understand the importance ofeach institution in the life of persons withdisabilities and their relationship withthese institutions.

The stakeholders meet helped inidentifying various individuals andinstitutions within the village that influencethe life of persons with disabilities. Throughthis process, areas where persons withdisabilities are excluded were identifiedand ways and means of achievinginclusion with the help of variousstakeholders were explored.

The focus group discussion with womenby women field workers allowed womenwith disabilities to openly share theirviews, needs and problems faced.

(c) Collecting Quantitative InformationQuantitative tools were used to collectspecific information on persons withdisabilities. A questionnaire was preparedin consultation with the par tner

organisations. This questionnaire filled bythe person with disability or their families’generated information on their generalprofile, status of education, vocationaltraining, employment and earnings.

(d) DocumentationA format was prepared for documentationin consultation with partner organisations.A pre-defined format was developed torecord information at the village and familylevel. It also helped to documentinformation collected during the PRA.

(iv) Workshop for ExperienceSharingAfter the entire process was completeda two-day workshop was organised inwhich all the partner organisations sharedtheir data and observations. The purposeof this workshop was to get an overviewof the information and to reflect on thefactors that had helped or hindered theinclusion of persons with disabilities in the



PRA process. The field areas varied andtherefore there were learning values fromthe field. It was important that theparticipants shared their experience tohelp enhance their learning. It also helpedto ensure that information, particularly thequalitative aspects, were not missed outin the process of analyses anddocumentation.

The workshop helped in a joint analysisof the issues faced by persons withdisabilities. One issue that was mentionedby all the participants was the relationbetween ‘Disability and Poverty’. It wasnoted that when poor people faceddisability they did not have the means toovercome it. The second issue highlightedwas that persons with disabilities were notonly excluded from social, cultural andeconomic process but also deprived fromschemes and facilities that were speciallymeant for them. This provided the partnerorganisations a direction to work on theissue.

The workshop also explored thepossibility of using PRA methods inresearching other issues, thus,highlighting their advantages anddisadvantages. While discussing thedrawbacks of the methods, the teams alsodescribed the methodological innovationsand changes that they made to achievethe intended objectives of the study, thusadding to the collective understanding ofthe process.

It was clear from the beginning that thestudy process would not be providing anytangible benefit to the village community.A need was felt to contribute to theknowledge and information on the village.Therefore a format for a model villageprofile was prepared to document theinformation. The profile would providecomprehensive information on the villagesand would be available in a simple usableform at a central point either at thepanchayat office or with the organisationinvolved in the study. This information can

be used for future planning and action forthe village. Information on the village wascollated and some data has been put inthe format. This needs to be updated asand when required. The organisations andthe community took up the responsibilityof updating the information on an ongoingbasis and mainstream disability issues inthe development work. It is a reiterationof commitment to pro-active socialinclusion.

2.2 Inclusive SocialEnquiry: ChallengesIn the study, efforts were made to includeall stakeholders of the society so as tounderstand how each of these groups canbe integrated with the other. This facilitatedthe process of direct interaction of personswith disability with the community and thuspromoted their inclusion. In the processthe team had to face several challenges.It is important to note that to overcomethese challenges different partners/CBOshave used different methodologicalinnovations. Some of them have beendocumented here along with thechallenges.

Many families were apprehensive to sendthe persons with disabilities to the PRA.It was difficult to seek co-operation ofpeople in such cases. In one of thevillages, there was one woman withdisability who was reluctant to speak tothe outsiders; till the end it was not possibleto seek any co-operation from her. Inmany instances persons with disabilitieswere brought to the meeting by friends andrelatives with the expectation of receivingsome benefits even though it wascommunicated that the PRA is beingconducted to share and learn about theissues of persons with disabilities withtheir participation. This was because itwas for the first time in many villages that

the issues of disability were beingdiscussed.

Persons with disabilities were keen tointeract but often did not feel free in largegroups and felt more relaxed in smallergroups. During group discussions, mostof the persons with disabilities sat at theback and par ticipated only whenspecifically asked to. When asked aboutthis, they said they were embarrassed toexpress their opinions in front of otherpeople since they had never done itbefore. In order to create an enablingenvironment for focus group discussions,the facilitators used flash cards in manycases; in other cases, a film on ‘disability’was shown. In most cases, sarpanch,school principal, and other leaders of thecommunity were very co-operative. Insuch cases it was not difficult to seekco-operation from the community.

During the group meetings andparticipatory exercises, the persons withdisabilities did attempt to talk. However,it was observed that in 44 per cent of thecases they were interrupted either bytheir family members, the sarpanch orothers in the group. This discouragedthem and in some cases they even leftthe meeting midway. This was particularlyso in the case of women with disabilities.They were dominated by all groups anddiscouraged from interacting in themeetings. Special efforts were made tointeract with them individually at theirhomes and with their families. In manycases persons with disabilities prepareda separate map on the ground withnatural colours that they themselves hadmanaged to collect. Subsequentcollective analysis of the PRA processhelped in generating awareness onattitude and behaviour towards peoplewith disabilities.



Similar was the case in villages having adalit and non-dalit divide. Villages havingmixed community of Hindus and Muslimswere quite sceptical about the PRA. In thebackdrop of the communal riots (2002) thevillagers were reluctant to expressanything openly. Spending time with thecommunity for some days at a stretchhelped. During that time, the teamexplained to them and the village leadersthe reasons for conducting the PRA. It wasdifficult to prepare just one social map insuch villages. In large and heterogeneousvillages, separate social maps wereprepared for separate groups of people.Moreover, the social map did not point outevery house separately. Instead, thelocalities were just pointed out, with themention of the houses of the persons withdisabilities.

An important factor that helped in theprocess was the awareness of peoplethemselves. Some of the villages that hadbeen chosen for the PRA were alreadyinvolved in conducting community basedrehabilitation (CBR) work. Therefore theyhad some knowledge of the issue of‘disability’. In such cases, local peoplewere very co-operative.

The priorities of the persons withdisabilities were different from those of therest of the community. Given this situation

some of the PRA methods had to bemodified to look into the access to basicservices from their perspective.

During the Venn diagram, the communitydrew the picture of the services theywanted to access, on the circular pieceof paper kept for the purpose. Theimportance given to each service waspointed out with respect to the personswith disabilities. For example if schoolwas considered the most importantinstitution for common people, it was notnecessarily the same for persons withdisabilities; this was because the schoolhad a flight of stairs, which is a barrier forthem.

Mobility mapping was done to find out thepattern of mobility of persons withdisabilities: how they commute and whatmode of transport they use etc. TheMobility map was also modified to someextent to understand whether persons withdisabilities commute alone or whetherthey take help from others. This map wasalso used to denote the frequency of theirtravel to certain places. Therefore this wasplotted on the Services and opportunitiesmap itself; and it allowed one to understandhow often the persons with disabilitiestraveled outside their village – or whetherthey always remained confined to theirhomes.

It is impor tant to have a clearunderstanding of the current situation ofpersons with disabilities, the physical andsocial barriers they face on a daily leveland how their own attitude and behaviourare shaped. Since women are vulnerable,particularly women with disabilities, it isimportant to understand the problemsfaced by this group and their specialneeds. This would be useful in making theright intervention and in achieving the goalof inclusion of persons with disabilities.

This chapter looks at the profile, needs,barriers, attitudes and behaviour ofpersons with disabilities. Special efforthas been made to understand disabilityissues from a woman’s perspective.

3.1 Types and Causes ofDisabilityIt has been found that there are more menwith disabilities (60 per cent) than women(40 per cent).

3. Barriers Faced byPersons with Disabilities

One possible reason for this is that womendisclose their disabilities less frequentlythan men with similar problems due toexisting prejudices. It was also observedduring the study that since women in ruralareas continued working in spite of theirdisability, many of them were notrecognised as being disabled. “It has beenfound that often in India, families do notdisclose the disability of their familymembers to others due to the stigmaattached. There are also cases wherefamily members may not be able torecognise minor disabilities”9.

The age profile is as follows: 5 per centare below 6 years; 28 per cent are between6-18 years; 7 per cent between 18-45years and 13 per cent between 45-60years. In 60 per cent of the cases disabilityoccurred below the age of 1, in 10 per centcases during the period 1-6 years i.e. 70per cent were disabled before they couldgo to school. Since this is the most criticalage for future health, it is imperative that

9 ‘Disability in India’ in ‘Just People… Nothing Special, Nothing Unusual’… Action Aid India

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Types of Disability(%)

59.3

13.6

12.9

110.42.8

��LocomotorDisability��Hearing Imparied

��Blindness

��Mental illness

��Celebral Palsy

��Others

Barriers Faced by Persons with Disabilities!"!17

Fig. 3.1

Types of disability(%)

59.3

13.6

12.9

110.4 2.8

Locomotor disability (59.3)

Hearing impaired (13.6)

Blindness (12.9)

Mental illness (11)

Cerebral palsy (0.4)

Others (2.8)

��


a high standard of nutrition and care bemaintained during this period. 15 per centwere disabled between 18-45 years.

Physical disability (polio and others)accounted for 62 per cent of the cases.There were 13 per cent visually impaired,11 per cent mentally impaired and 14 percent speech and hearing impairedpersons in the sample. See Fig. 3.1

The cause of disability was not known tothe persons with disabilities or to theirfamily members. 54 per cent weredisabled from birth and the reasons for thisare not understood by the family orcommunity. About 27 per cent of thedisabilities were caused due to certainillness, disease or delayed medicalattention. Many families reported that theirchild had high fever or had been given aninjection that led to the disability. 12 percent of the disabilities were due toaccidents. It is important to note that manyof the causes enunciated by thecommunity were related to the availabilityof and accessibility to basic services andhence are also issues for advocacy.

The physical abilities of persons withdisabilities vary a great deal which givesa clear indication for the need to createopportunities and an enabling environmentso that they are capable of performingindependently within their community. 74per cent of the persons with disabilitiesin our sample can stand, 70 per cent canwalk and 87 per cent can eat and batheon their own. However, only 55 per centcould go out of their house on their ownwithout support. We also found that only44 per cent can read. This is becausebooks in Braille or audio formats are notreadily available for those with visual

10 In his article ‘This Country has to Change’ in David Bornstein, ‘How to Change the World’, Oxford University Press,New York, 2004

impairment. This could also be due to thefact that fewer children with disabilities goto school and those who go also drop outdue to various barriers. Only 20 per centof the persons with disabilities in oursample could do their own exercises.

3.2 Social Engagement andNeeds

3.2.1 Social NeedsPeople with disabilities like anyone elsehave social and psychological needs.They need to interact with friends,neighbours and other members of thesociety. Many people have no experienceof interaction with persons withdisabilities. For reasons of access, socialstigma and poverty, many of them livetheir lives in virtual isolation; they are keptin their homes and are denied a normallife in the community. As Javed Abidi ofthe NCPEDP has noted, “There arehundreds of thousands of householdswhere the kids are just hidden away.”10

Many persons with disabilities werebrought by others to participate in thegroup discussions held during this study,although it was clearly stated that theywere not to receive any material benefitfrom the process. The discussions wereabout persons with disabilities and since‘disability’ as a subject per se had probablynever been discussed with them beforethey were motivated to participate.

The findings highlight that the participationof persons with disabilities in activitieswithin the community was limited. In ourstudy area 47 per cent of persons withdisabilities attended both social andreligious functions, of which 53 per centattended only religious functions. Persons

with disabilities are discouraged fromattending social functions like a marriage,while most of them take part in religiousfunctions.

The group discussion revealed that therewere cases where friends have stoppedvisiting the persons with disabilities andsince mobility is limited they find it difficultto visit others. Relatives usually take themto temples and mosques during religiouscelebrations. This could also be due to thefact that most villages (65 per cent) hadat least one temple and many had 5-6temples and some (6 per cent) hadmosques also. They do not visit religiousplaces outside their communities becauseof the physical hurdles (staircase leadingto temple) they have to face. Sometimethe non-disabled carried the persons withdisabilities to the temple but this did nothappen in the case of other socialoccasions.

Women with disabilities are found to besocially insecure. The study highlighted

several situations in which women wereabused and exploited. To protect them,girls are not sent outside the village andin homes for the mentally retarded, womenare sterilised to avoid pregnancies.

In Kalyanpura village inBanaskantha district a motherrelated her story of how she has tokeep constant watch over her19-year old daughter who ismentally retarded. She fears thather daughter will be abused by thevillage youth.

In Kanotar village of Dholka talukaof Ahmedabad district we were toldthe story of a woman with disabilitywho was abused several times inthe mill where she worked. Shewas economically backward henceshe could not leave the job. Herhusband abandoned her when shebecame disabled. She was the solesupport for her children.



3.2.2 Family LifeThe marital status of persons withdisabilities is crucial to understanding theirsocial status. 54 per cent of disabledadults are not married, 6 per cent arewidowed and 1 per cent is divorced. Inmany cases the reason for divorce wasthe disability of the spouse that may haveoccurred after marriage. There were manyinstances where couples are not divorcedyet they live separately, especially whenthe wife becomes disabled. Many men alsoforce their disabled wives to leave homeso that they can live with other women.Women on the other hand continue lookingafter the needs of the husband and familieseven when their husbands are disabledand unable to earn a living. This isparticularly true in cases where thedisability occurs after marriage. There arecases where men marry a second timewhile the wife who has become disabledcontinues doing the household chores.

Ramilaben (name changed) liveswith her husband in a smallvillage of Prantij taluka ofSabarkantha district of Gujarat.Her husband suffers fromhysteria and often cannot go forwork. Ramilaben takes care ofher family and earns a living byselling bangles in theneighbouring villages. She is alsoinvolved in the developmentactivities of her village. Shecontinues to live with herhusband and two childrenbearing all the responsibilitiesdespite her husband’s disability.

Data shows that while 59 per cent of themen with disabilities are married, only 41

per cent of the women with disabilities aremarried. In all age groups the number ofmen who were married was higher thanwomen. In the older age group (40-50years and above 50 years) there weretwice as many married men as comparedto women.

Interestingly, the group discussionsshowed that men with disabilities look fornon-disabled partners, while women withdisabilities are married either to men withdisabilities or to men who belong tosocially and/or economically weakersections of society.

Table 3.1 Disability at marriedcouple level

Sex Non- Disableddisabled Spouse (%)spouse (%)

Male 81 19

Female 55 45

Several reasons emerged from thediscussions with non-disabled andpersons with disabilities from thecommunity. The community seemed tolook down upon persons with disabilitiesas ‘creatures of mercy’ and henceincapable of marriage. Similarly, theyseemed to consider themselves as‘useless’ and see marriage as a burden.

• Half the adult persons with disabilitiesfind it difficult to find marriage partners

• 60 per cent adult women could not getmarried

• 40 per cent adult men could not getmarried

• Among married persons withdisabilities 19 per cent of men withdisabilities have wives with disabilities.

• Among married persons withdisabilities 45 per cent of women withdisabilities have husbands withdisabilities. See Table 3.1

3.3 Economic Engagement

3.3.1 Economic NeedsDisability creates poverty and vice versa.A person with disability is poor as a resultof the loss of income due to his/herdisability. Similarly, poor people are morelikely to suffer from preventabledisabilities, particularly those involvingmalnutrition and birth injuries. Despite thePWD Act, 1995, persons with disabilitiesare still denied employment on thegrounds of their disability. Those whoacquire disability during their period ofservice are either generally asked to leaveor are forced to resign through direct andindirect pressures in the workingenvironment.

Persons with disabilities who have showntheir proficiency in cer tain fields(Beethoven, Stephen Hawking) are stillconsidered by the general population asexceptions rather than the rule.

It is also important that the skills andpotential of persons with disabilities are

recognised. In the absence of anyrecognition of their potential, they remainuneducated and unemployed, leading toincreased vulnerability and exploitation.

In 1977, the GOI announced a three percent reservation for persons withdisabilities in Government jobs, but limitedits notification only to jobs in the ‘C’ and‘D’ categories (clerical grades). Sadly, twodecades later, the percentage of personswith disabilities employed has not reachedeven one per cent.12 The GOI has alsoidentified 1400 jobs that are reserved forpersons with disabilities. However, it hasbeen noted that many of these jobs requirehigh levels of skill and qualification and aremore appropriate for the urban population.It is not easy for the rural youth to makeeffective use of this reservation.

Assistance is also provided by theNational Housing and FinanceDevelopment Corporation (NHFDC) to setup self - employment projects. In Gujaratsuch assistance is routed through theMahila Arthik Vikas Nigam. However,loans have not been granted for the past2 years since the organisation gave upthe responsibility.

Our study reveals that 93 per cent of thepersons with disabilities in the age groupof 18-45 years have not received anyincome generation skill training (vocationaltraining). Considering this age as the mostproductive period, we lose out on thecontribution of this group to the economy.Studies conducted by variousorganisations claim that there are 7 millionemployable persons with disabilities inIndia, out of which only 1 lakh were

Samir Ghosh, an employee of TataSteel, who lost his hands andarms in an accident, explains:“I was turned down for the IASexams because I wouldn’t be ableto ride a horse; I am yet to see anofficer ride a horse to work.”11

11 Pritha Sen, et. al in their article ‘Trying to Grow’, Feature story in Outlook, June 1998.12 Bare Facts by NCPEDP, 1999



employed in the government sector duringthe period 1958-98.13 Further NCPEDPclaims that India has 6 crores of personswith disabilities and taking Rs. 500 as anominal monthly cost of living per personthe amount is Rs. 36,000 crores perannum. If persons with disabilities weremade self-reliant, India’s wealth creationwould increase by a minimum of Rs.36,000 crores per annum.14

In all the villages studied, the persons withdisabilities were trained in limited skills,which included basket making, weaving,embroidery and typing.15 In the absenceof special training and opportunity tocontribute their full potential, they end updoing manual work for small sums of

money. In many cases their employersalso exploit them. Even the training thatthey had undergone did not help them toearn a living. 53 per cent were not earning;34 per cent of the persons with disabilitiesin the age group 18-45 years were earningless than Rs. 1000 per month, 8 per centwere earning Rs. 1000-2000 and 7 percent were earning above Rs. 2000 permonth. Only 35 per cent of the personswith disabilities in the age group 45-60years were earning.

The main source of economic activity inthe village being agriculture and dairy,persons with disabilities, particularlywomen, found employment in this sector.60 per cent of the villages have milk

13 NCPEDP: Bare Facts, www.ncpedp.org14 As quoted in the poster published by NCPEDP in 199915 In Gujarat people learn these crafts from members of their family.

cooperatives. But in many villages it issituated in the upper floor, which makesit inaccessible.

Women with disabilities are engaged inboth household and economic activitieswhile men with similar disabilities may notbe working. Our study revealed that 84per cent of women with disabilities areengaged in either household or economicactivities. In rural areas while women wereinvolved in agriculture, in urban areas theywere engaged in tailoring, embroidery,vegetable vending and in daily wagelabour.

Relating the status of employment/income of persons with disabilities with thenumber receiving vocational training, itcan be said that people in rural areasshould be given need-based training. It isimportant to note that 80 per cent of alleconomic activities in India are in theinformal sector. Therefore, the kind of skillsrequired for jobs in the informal sectorneed to be recognised. This would notonly help people to become economicallyindependent, but also lessen the burdenon the government to provide socialsecurity measures to large numbers ofunemployed youth.

Without equal opportunity for gainfulemployment, persons with disabilities aredependent on their family members andothers for their living. They remain at themercy of the non-disabled. However, in our

study area we came across cases wherepersons with disabilities took up theeconomic responsibility of their families.

The media often portrays persons withdisabilities in the traditionally acceptedroles of begging and as dependent onothers. However, there is a gradual shiftin the media towards highlighting thepotential of persons with disabilities, theirneeds, skills and adaptability to theexternal environment. Films16 can have avery powerful impact on sensitising people.Therefore, there is a need to produce andscreen more audio-visual aids in changingthe mindset of the community.

Karsanbhai (name changed) residingin Umedpura village of Idar taluka isa person with disability. He learnedbasket making as a part of hisvocational training. However, he isgenerally found dragging himselfaround the village with his feetaffected by polio. Although, he hadtried his best to establish a business,hoping to utilise his vocational skills,he had problems in managingaccounts and marketing theproducts. He was forced to closedown before he even got started. Inhis words, “Soon I realised that thereare too many people already in thisbusiness, with better skills.”

16 Action on Disability and Development (ADD) India has made a documentary film ‘Unheard Voice’ on the abilitiesof persons with disabilities. ADD India is an organisation working in Bangalore for the empowerment of personswith disabilities along with other related issues. This film was dubbed in Gujarati and screened in all the villageswhere the study was carried out. This helped to create awareness among the communities on the potential ofpersons with disabilities and also in creating a better understanding of the issue.



3.4 Special NeedsPersons with disabilities have needssimilar to those of any other person;however they also have certain specialneeds. The GOI has made certainprovisions in the PWD Act 1995. This Actwas formulated to ensure that all personswith disabilities get their right to lead adignified life. Some of the key provisionsinclude providing a disability certificate,which would help the persons withdisabilities to avail themselves ofgovernment services that are providedspecially for them.

In the 63 areas studied, 71 per cent ofpersons with disabilities have a disabilitycertificate. For the rest the main reasonsfor not having a certificate were that campsfor certification were not held in theirvillage and the institution that was issuingthe certificate was far. They did not haverelatives or friends who could take themfor certification. 19 per cent did not knowabout the disability certificate.

Even those who had certificates had usedit only to access certain benefits likegetting a bus pass or educationalscholarship. Most families were not awarethat children with disabilities, if certified bya doctor, are entitled to educationalscholarship. Those who availedthemselves of scholarships had used theircertificate for Scheduled Caste (SC)under the reserved category. Only 3 percent of the persons with disabilities hadreceived monetary support from thegovernment on a regular basis.

There is a provision under governmentschemes to provide aids and appliancesto persons with disabilities free of costthrough institutions established speciallyfor the purpose. However, many of themhave no access to these devices andhave compensated in other ways due tolack of awareness. In the study area, 75per cent were not using aids andappliances and 20 per cent did not provideany information on this.

Many of the persons with disabilities didnot want to use aids and appliances sincethey had adapted to their condition andthey did not want to change their pattern.Another reason was that they found itdifficult to repair the aids and appliancesin the village. Wheelchairs were not beingused because in rural areas they foundit difficult to use it on muddy and unevenroads. Tricycles were a preferred mode oftransport. Many were also not aware thataids and appliances are available free ofcost through government schemes onsubmission of income and disabilitycertificates.

3.5 Access to ServicesPersons with disabilities face a number ofobstacles simply because ofenvironmental and physical barriers.Often, they are left out and remainexcluded from the mainstream societybecause most public places are out oftheir physical reach. Roads, transport,public buildings and toilet facilities are alldesigned with able-bodied persons inmind.17 Barriers deny people the

17 Professor S. Balaram in his article ‘Barrier-free Architecture’, “We design buildings for people who are assumed tobe always young and in perfect health.” “Are built spaces accessible to the children, to the elderly, to the pregnant,to those of us with any form of disability - temporary or permanent?” According to him, the indifference to thissection of society thus is nothing but a violation of basic human rights such as equality and non-discrimination.

opportunity to participate fully in life. Thisincludes exclusion from educational,economic, social and cultural spheres.

Access to basic services and supportsystem, on account of long andcumbersome procedures and thebureaucratic system, is also another majorform of barrier for a person with disability.In addition, people have very littleinformation about many things that couldmake their lives more comfortable.

Ignorance about the existence ofservices, aids and appliances are alsobarriers.

Government Provisions for Persons with Disabilities

To provide support to persons with disabilities and to help them become asself-reliant as possible, the Government of India has made several provisionsfor them and their families. These include free education till 18 years of age,reservation in particular jobs and educational institutions, concessions fortravel, provision of aids and appliances, income tax relief measures, housingfinance, vocational training, entrepreneurship and finance for self-employment.

To improve the accessibility of buildings and infrastructure in Gujarat as per theregulations of the Gujarat Town Planning and Urban Development Act, 1976,Chapter 28 of the Ahmedabad Regulations provides for making buildings andpublic places accessible and barrier free. However, such provisions are notimplemented in practice. The state of rural accessibility is even worse given thepoor quality of roads, transport and lack of awareness among builders andcontractors.

Sex of persons Illiterate Literate Totalwith disabilities

Male 52% 48% 706 (61%)

Female 65% 35% 448 (39%)

Total 656 (57%) 498 (43%) 1154 (100%)

Some of the services that persons withdisabilities would access are schools,health centres, bus stops, telephonebooths, religious places, banks andshops.

3.5.1 Access to Education43 per cent of persons with disabilities inthe study were illiterate and 57 per centwere literate. However, there were moreliterate men (48 per cent) than women(35 per cent). 65 per cent of the women

have never been able to go school, whileboys are encouraged more to go toschool. See Table 3.2.


Table 3.2 Literacy among persons with disabilities


If we look at the percentage of boys/girls with disabilities in each level ofschooling, it is clearly seen that moreboys go to school than girls. As wego to higher levels this gap widens.See figure 3.2

Girls with disabilities drop out ofschool more frequently than boyswith disabilities. Parents point out thattheir disabled daughters arevulnerable to men who tend to takeadvantage of their weakness. Giventhis social insecurity, parents refrainfrom sending their daughters withdisabilities to schools outside thevillage. In addition, lack of access tofacilities like toilets and drinking watermakes going to school even moredifficult for these girls.

Primary schools exist in 98 per cent ofvillages, while there are high schools onlyin less than 20 per cent villages. Thismakes education beyond the primarylevel less accessible to children in ruralareas who have to travel long hours andwalk long distances to get to school. Forchildren with disabilities, such conditions

are the main barriers to access toeducational institutions. In addition, thephysical structure of schools is not barrierfree. Problems in dealing with unevenroads, stairs in the building structures,lack of toilet facilities, etc. dissuadechildren with disabilities from seekingformal education.

Those children withdisabilities who do manage toenrol in primary schoolsbecause of their strongdetermination are oftendeterred by their own familiesfrom going outside the villageto attend high school. In thestudy, there are 354 childrenwith disabilities between 4and 18 years, who are ofschool-going age. Out ofthese children, only 203 (or57 per cent) are actuallyattending school.

Figure 3.3 highlights the profileof children with disabilitiesgoing to school. It reveals that38 per cent of children are inprimary school (1st-4th

standard), 26 per cent are inmiddle school (5th-7th

standard), 21 per cent insecondary school (8th-10th

standard) and 6 per cent inthe higher secondary (11th-12th standard). Of the 203children with disabilities goingto school, only 6 per centhave completed their 10th

standard and are continuing

their studies. More than 45 percent of the disabled populationgoing to school is studyingbelow the 5th standard, i.e. inprimary school.

Many children with disabilitiesdrop out of school for variousreasons. It was found that thereare drop-outs either afterprimary (class IV) or aftersecondary school (class VII).The reasons quoted for drop-outs are similar to those for lowenrolment. The causes of highrate of drop-outs, particularlyamong girls, are the absence oftoilet facilities at schools and thebelief that women will any wayget married and take care of theirfamilies and do not have anyreason to be educated.

Girls in general and girls withdisabilities in particular havegreater restrictions on attendingschool outside the village.Discussions with their mothersrevealed that their daughters areprone to abuse and exploitation


��

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5th - 7th26%

1st - 4th38%

8th - 10th21%

11th - 12th6%

Pre nursery/nursery

9%

Fig. 3.3

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5th - 7th26%

1st - 4th38%

8th - 10th21%

11th - 12th6%

Pre nursery/nursery

9%

Academic profile of children withdisabilities in school

Fig. 3.3

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16.3 15.9

7.4

4.6

9.4 9.27.8

3.21.8

23.5

0

5

10

15

20

25

1-4 5-7 8-10 11-12 Graduate+

Educational level

% o

f P

WD

s

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�� female

Fig. 3.2

Level of education of PWDs(%)


by those who tend to take advantage oftheir weakness. Parents are unwilling tosend their daughters to schools outsidethe village because of their vulnerabilityto abuse.

3.5.2 Access to Primary Health Care63 per cent of the villages that werecovered under the study do not haveprimary health centres (PHC) in thevillage. These villages are covered by thePHC located in a nearby village.

The discussion with thecommunity revealed that agovernment nurse visitsevery village regularly oncertain days. Studies onprimary health in Gujaratshow that in many PHCsthe doctor’s presence isirregular18 . In rural areas60 per cent of thepopulation do not accessa PHC and prefer to go toa private clinic. Thispercentage is 90 in tribalareas.

A participatory exercise -Venn diagram19 - wasundertaken at the villagelevel to collect data on theranking of institutions/services in the village interms of their function andimportance for personswith disabilities. In manyvillages the size of thecircle denoting the PHC

was small reflecting poor/inaccessibleservices. In some villages in Sabarkanthadistrict no circles were placed for the PHCsince the doctor never visits the centre.

Data shows that about 27 per cent ofdisability was the result of disease and/orpoor medical treatment. This also indicatesthe low standard of health services andlack of access to primary health care atthe village level. Specialised care is usuallyavailable only at the district/taluka level,

18 Health Monitor, Foundation for Research and Health Systems, Ahmedabad, 1997 and The State of Our PrimaryHealth Centres – A Study of 40 PHCs in Gujarat, UNNATI, 1997.

19 The exercise uses circular pieces of paper to denote the level of reference for a particular institution/serviceexisting at the village. The size of the circular piece denotes the level of importance. The larger the size of thecircular piece the greater the preference and vice versa.

ur

Venn diagramUrban Cluster: Pravin Nagar, Ahmedabad

making these services even moreinaccessible to persons with disabilities.

Often, we found that village health workerswere unaware that mental illness andmental retardation are also types ofdisabilities and that, in general, the staffof most PHCs have limited information onthe various causes of disabilities.Educating health workers on types ofillnesses that can result in disability couldbe effective in reducing the overall levelof disability.

Anganwadis are part of the IntegratedChild Development Scheme (ICDS). Theyare expected to provide supplementarynutrition to expecting women, mothersand children up to 6 years of age. In 95per cent of the villages where the study

was carried out Anganwadis exist.However, the community is not able toaccess these services.

More than 50 per cent of the persons withdisabilities in our study have beendisabled from birth20. Often such disabilitycan be related to poor antenatal care,inadequate nutrition and lack of completeimmunisation during pregnancy. Suchchildren do not avail themselves ofanganwadi services at all.

3.5.3 Access to Other Services93 per cent of the people responding (fromvillages and slums) do not have accessto a public telephone booth. While morethan 60 per cent of these villages havesmall shops, goods are more expensiveand they do not cater to the bulk needs of

20 The study has been carried out in partnership with 13 grassroot organisations, out of which 9 belong to Sabarkanthadistrict of Gujarat. The water in these areas contains high levels of fluoride and arsenic. There is a locally prevalentbelief that the high level of disability from birth is caused by this factor.



the community, for which they have to goto the market at a considerable distancefrom the village.

Most villages did not have a bus stop.Expecting women and persons withdisabilities found it difficult to access thehospital in the nearest city for lack oftransport facility. Childbirth at home iscommon in rural areas. Childbirth in thehands of untrained dais can also add to

Table 3.3 Availability of other services in the study area (%)

Post Office Bank Shop Telephone Bus stop

Yes 26 24 65 7 32

No 74 76 35 93 68

the risk of the child being born withimpairment.

Most villages (76 per cent) do not havebanks. People generally visit banksoutside the village, which is a barrier for aperson with disability. Even the meagresums that they manage to earn cannot besecurely saved. Group discussionsrevealed that in most cases such incomebecomes the property of family members.

Bus Stop

Primary School

Bus Stop

Primary School

School Outstationtravel

Services and opportunities map indicating location and existence of services

Bazar

3.6 Social and AttitudinalBarriersThe overall development of a persondepends largely on the attitude of one’sfamily, friends and the larger community’sattitude and behaviour. A positive attitudeimplies belief in the skills and potential ofthe other and gives encouragement to beinvolved in various activities. A negativeattitude implies non-cooperation. Thesame holds true for attitude and behaviourtowards persons with disabilities. In ourstudy we looked at the attitudes andbehaviour of society towards persons withdisabilities as well as of persons withdisabilities towards themselves.

Based on formal and informal interactionswith the community, we have tried todevelop an understanding of the attitudeof the non-disabled towards the personswith disabilities. These interactionsinvolved discussions on the skills andpotential of persons with disabilities andclose observations of the interactionsbetween them and others. The study alsoprovided scope for interviewing severalstakeholders at the village level who

influence the life of persons withdisabilities, including the village Sarpanch,the Talati, the health officials, the schoolteacher(s), and the various local groups-CBOs, Women’s Groups (WGs), Self-Help Groups (SHGs) existing at thevillage, with the goal of documenting theirattitude towards persons with disabilities.

In 75 per cent of thevillages the Sarpanchshowed interest andpromised to extend co-operation in working withpersons with disabilities.Special effor ts werebeing made in somevillages to inform thepersons with disabilitiesabout the Gram Sabhaand motivate them topresent their needs sothat the panchayat maytry to address them. Inmore than 65 per cent ofthe area studied, the


In a village in Sabarkantha districtthe sarpanch has tried to includepersons with disabilities in the gramsabha. He showed the researchteam the register used duringpanchayat meetings in which he hadspecially marked the names ofpersons with disabilities who hadattended the meetings. He alsoadded that he sends out messagesindividually to inform persons withdisabilities of meetings and gramsabha. This way he had made anattempt to bring the persons withdisabilities into the mainstream ofthe local development process.

Fig. 3.4

��

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Attitude of Local Instituions to PWDs

-80

-60

-40

-20

0

20

40

60

80

100

Types of Local Instituions

Per

cen

tag

e

�� positive attitude

�� negative attiutude

PRIsCo-operatives

CBOs YouthGroups

Women’sgroups

Attitude of local institutions towards PWDs

Types of Local Institutionsnegative attitudepositive attitude


women’s groups were positively inclinedtowards conducting awarenesscampaigns in the community on the needsand barriers faced by the persons withdisabilities and in highlighting their skillsand potential. They also felt the need tocreate awareness on the PWD Act 1995.

Youth groups, co-operatives schools andCBOs were not oriented to the needs ofthe persons with disabilities. But theyexpressed an interest in takingresponsibility, particularly for certificationof persons with disabilities of their village.

A school in Memadpura in Prantijtaluka in Sabarkantha districtencouraged the participation ofchildren with disabilities in theircultural programmes. The teachersalso showed great pride in theperformances of their children.

Efforts were made to encourage them tointeract freely in a group. Behaviour ofpersons with disabilities and the non-disabled were observed. In 75 per cent ofthe cases nothing specific was observed.In 11 per cent cases the non-disabledlaughed at the persons with disabilitiesand in 13 per cent cases they wereindifferent towards them.

The behaviour of family members,particularly to women with disabilities, isa matter of concern. Women who becamedisabled after marriage face manyhardships in the family. It was found duringthe focus group discussion that some ofthe women were forced to do work athome and outside despite it beingphysically painful. Many women did notrespond to our questions because themothers-in-law were also present.However, there were some cases in whichthe women with disabilities said that thefamily took good care of them.

3.6.1 Recognition of Skills andPotentialIt was found that the people in general arenot sure of the skills and potential ofpersons with disabilities. This could bedue to the fact that they rarely interact withthem.

It is commonly believed that persons withdisabilities lack the capacity to performcertain tasks. They are dependent on non-disabled persons (friends and/or familymembers) in many ways. Bechara(helpless) is the word often used for themin the local context. Their potential andcapabilities are in most cases not knownas they are not questioned. As seen infigure 3.5a, 75 per cent of the respondents

��

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Community

75%

22%3%

�� Yes��

Not sure

No

��

��

Self

30%

40%

30%

��Yes

��Not sure

No

Belief in potential and skills of persons with disabilities

Fig. 3.5a Fig. 3.5b

��Yes��

�� Not sure

No

were not sure of the abilities of the personswith disabilities, 22 per cent believed intheir skills and potential and only 3 percent did not believe in their skills andpotential.

However, we came across cases wherepersons with disabilities have proved theirskills, though the fact remains that peoplerarely recognise them. Hence, there is aneed to document such success storiesso that they become a reference foradvocacy for their rights. This will also helpin increasing interaction between personswith disabilities and the non-disabled.

Just as attitudes of others are important,the attitude of persons with disabilitiestowards themselves also determines theway they interact with the others. This alsodetermines the way the communityperceives them. Looking at the attitude ofpersons with disabilities towardsthemselves, we find that only 10 per centdid not believe in their abilities; 52 per centwere not sure and 38 per cent believed

that they had the potential and skills whichthey can use.

Opportunity/space and faith in theirpotential and abilities are important factorsthat help persons with disabilities tointeract with others and be part of themainstream. They certainly want toparticipate in the decisions that affect theirown lives.

In most situations people behaved in astrange manner with persons withdisabilities, not because they wereinsensitive but because they were notaware of how to interact with them. Thestudy and field observations have shownthat while people would like to work withpersons with disabilities, few have a clearidea on how to do this. It shows the needfor awareness campaigns to highlight theabilities of the persons with disabilities andfor equal opportunities to enable them toachieve their full potential.

Haribhai and Rameshbhai (nameschanged) are visually impaired.Haribhai is a tailor and Rameshbhaiis a farmer from Pedhmala village ofHimmatnagar taluka of Sabarkanthadistrict. They are the sole breadwinners for their families. Haribhaiskilfully continues with his familyprofession although he is visuallyimpaired for 15 years. Rameshbhailooks after his family and eventakes them out to the marketoccasionally. Unless told, it isdifficult to notice that he is visuallyimpaired.

There is nothing so special aboutRambhai (name changed) of Dholkataluka of Ahmedabad district whohas a locomotor disability. Heweaves ropes into a special type ofaccessory called ‘gophan’ used toscare monkeys from the paddyfields. He was the only one in thevillage with this skill. The product hadspecial value in the local markets.He used to sell in the village market.Youth from the community helped himto get a mobility aid, which helpedhim to sell his products outside thevillage and earn more. He alsogained confidence and shared hisskill with others in the village.



These action points were arrived atbased on the findings of the PRA study,field based interventions carried outin par tnership with developmentorganisations, field observations, dialoguewith institutions and agencies.

Authentic DataDefinition of disability and identification ofpersons with disabilities is a major issueof concern. The inclusion of disability inthe Census should be a rule rather thanan exception. Mass awarenesscampaigns, prior to the collection ofCensus data, on the purpose of collectingthis data need to be organised. Training ofofficials to overcome attitudinal barrierswhile collecting data could help overcomethe problems arising out of lack ofauthentic data. There is a need to look atpossible involvement of local institutionsto support officials during the Censusexercise to ensure maximum coverage.

Identification and PreventionEarly identification of disability is importantso that timely intervention can be made.Medical and paramedical staff should betrained in early identification to reduce theincidence of preventable disabilities. ICDScan play a major role in early identificationof disability and in timely intervention.Outreach services in rural areas need tobe expanded to facilitate professionalintervention at early stages that canminimise the extent of disability. It isimportant to create awareness regardingpossible causes of disability and therapies

4. Way Forward - Action Points

that can help cure or reduce the impact ofdisability.

Awareness on prevention needs to beraised through Information Education andCommunication (IEC) material so that wecan reduce the number of persons withpreventable disabilities.

Access to Rehabilitation ServicesCo-ordinating and building linkagebetween referral services, persons withdisabilities and other agencies involved intheir rehabilitation can help improveaccess to basic and specialised services.Information on the referral services shouldbe documented and made available topersons with disabilities at the local level.

The Social Defence Officer (SDO) orDistrict Disability Rehabilitation Centre(DDRC) in districts where it exists shouldact as the nodal agency to co-ordinateimportant services and the delivery ofservices at the district and village level.The social defence office can play a pro-active role in establishing linkages amonginstitutions and facilitating the process ofproviding identity cards (ID) and insimplifying improved access to servicesand schemes by persons with disabilities.

The system of certification should besimplified through camps at the local level.Information on camps should bedisseminated more widely so thatpersons who are not linked to institutionscan also access these services.

Access to Health ServicesThere is a need to ensure proper healthcare systems at the village level. Theexisting system can also be improved towork more effectively. Strengthening ofhealth care delivery, particularly prenataland postnatal care, can reduce theincidence of disability. Establishing linkagebetween various levels of health care canalso be useful in reducing the incidenceof preventable disabilities.

Access to EducationSchools should be supported andencouraged to enrol all children,irrespective of their physical/mentaldisability. The integrated educationprogramme should be spread extensively.Not only special educators but all teachersshould be trained to work with childrenwith disabilities. Most approachesemployed for children with disabilities canalso be used very effectively with childrenwithout disabilities. Including such trainingin their curriculum would help teachers tosupport children with disabilities to reachtheir full potential and promote inclusion.

Access to EmploymentSkills should be imparted to persons withdisabilities in the areas of their interest andin accordance with market demands.Vocational training as per demand needsto be provided. The government hasidentified 1400 jobs for persons withdisabilities. This list needs to be expandedand developed in consultation withpersons with disabilities. Currently, thetraining is not linked to the employmentopportunities available. There is a need toidentify newer areas of training that willprovide them a sustainable livelihood.Linking the persons with disabilities toexisting Community Based Rehabilitation(CBR) programmes within the area canhelp in providing training using localresources and keeping the local contextin mind.

At present the government jobs forpersons with disabilities are reserved atall levels A, B, C and D. However, it hasbeen found that they are able to get jobsmostly in the C and D categories. Theyare unable to avail the benefits of

Way Forward - Action Points!"!35


reservation in A and Bcategories since in manycases they do not havethe required qualification.There is a 3 per centreservation of jobs in thepublic sector. There is aneed to disseminate thisinformation among thepersons with disabilitiesand employers.

Private sector employersneed to encouraged andoriented to employpersons with disabilities.A draft policy onemployment of personswith disabilities has beenformulated. This needs tobe followed up and promoted. The CBRprogramme, which identifies and lists thepersons with disabilities in the local area,can be a potential link between personswith disabilities and employers at variouslevels.

Access to InformationThere is very little awareness on the PWDAct 1995, which is the first legal provisionto ensure the rights of the persons withdisabilities. Due to lack of awareness, thepersons with disabilities are not able toaccess government schemes. Informationshould be disseminated in a simple formatand through awareness campaigns. Alongwith this, other information in user-friendlyformats (Braille, audio, large print, etc.)should be made available.

Information on services available forpersons with disabilities needs to becollated at the decentralised level (village,taluka and district) and disseminated forpromoting accountability.

Stories of positive images can bedocumented and disseminated widely.Much of the negative attitude society hasis due to ignorance and limitedunderstanding of the potential and abilitiesof persons with disabilities. Positive storiescan help effect a change in the attitudesand behaviour of the community. Asupportive environment and publicacceptance can help persons withdisabilities to realise their potential and befully integrated in the community.

Role of Civil SocietyMost institutions engaged in therehabilitation of persons with disabilitiesare located in the urban areas whereas afairly large section of persons withdisabilities are in rural areas. Moreover,many persons with disabilities do not needspecialised or institutional care. Apart fromlocal bodies/organisations at the villagelevel, development organisations are wellpositioned to be in contact with personswith disabilities and including them in their

on-going development activities.

Recently disability has been recognisedas a development issue, however, inreality, most development organisationsare not focusing on the developmentneeds of persons with disabilities withintheir programmes. Our experience in thisproject suggests that orientingdevelopment organisations to the issuesof persons with disabilities and concerteddialogue on addressing disability as across-cutting issue in all developmentwork has led to conscious initiatives forinclusion of persons with disabilities.

In order to strengthen and broad basesuch initiatives, it is important thatacademic courses for social workers andperspective building programmes ondevelopment issues incorporate disabilityas a cross-cutting issue and highlight therole of development organisations forinclusion of persons with disabilities in the

mainstream. Linkages with the academiacan be fostered for inclusion of disabilityas a cross-cutting issue in theirprofessional courses.

Development organisations can not onlydirectly involve persons with disabilities intheir work but also build partnerships withdifferent stakeholders of civil societytowards achieving the goal of inclusion ofpersons with disabilities in themainstream. For instance, sustainedlinkages with architects, designers andplanners can help further the goal ofcreating a barrier free environment;linkages with local electedrepresentatives/bodies can help place theissues of persons with disabilities on thelocal development agenda. It is alsoequally important for developmentorganisations and institutions forrehabilitation to interact on a commonplatform to complement and supplementtheir efforts.



Creating a Barrier-Free EnvironmentThere are numerousstructural barriers in publicbuildings be they schools,hospitals, governmentoffices, parks, temples etc.Although there are guidelinesand information on how theenvironment can be madebarrier free, we need to haveplatforms for dialoguebetween the designers andarchitects and the end usersof the built environment,transport and public spaces.Organisations working onissues of persons with disabilities canhelp create such platforms so that theplans are need based. The Governmentof Gujarat has been pro-active in thisregard and has passed a resolution (No.P R C H/102000/1184/6 dated 22 June,2004) making it mandatory to incorporatebarrier free features in all public buildings.This needs to be enforced by thegovernment, supported and followed upby the civil society, specifically

associations of architects, builders,persons with disabilities and developmentorganisations.

Orthopaedic departments in hospitals,physiotherapy centres, Social DefenceOffices and other agencies workingprimarily on issues of disability should bemade physically accessible.

Gender and DisabilitySpecial needs of women with disabilitiesshould be focused on wherever genderrelated policy is being formulated. TheGujarat State Gender Equity Policy caninclude a section on gender and disability.Gender should be a cross-cutting themefor all government programmes. Whereverthere are reservations, efforts should bemade to include women with disabilities,especially in institutions like panchayatsand boards of institutions.

Network of Persons with DisabilitiesNetwork of persons with disabilities needsto be expanded and developed. Supportshould be provided to improve theiradvocacy skills so that they can mobilisethemselves and share their needs invarious forums/platforms for the same tobe addressed. Increased opportunities forinteraction between the persons withdisabilities and multiple stakeholders willcertainly help to bridge the gaps in theimplementation of their rights.



References1. A. Gangatharan (2001), Barriers at Every Step for Physically Challenged, Labour

File, October-November 2001.

2. Action Aid Disability News, August 2002, Chapter 3, Page 10.

3. Action Aid, India (2003), Just People ...Nothing Special, Nothing Unusual.

4. Ajit Dalal, Namita Pande, Nisha Dhawan, Deepa Dwijendra and John W. Berry (2000),The Mind Matters: Disability Attitudes and Community Based Rehabilitation, Centreof Advanced Study, Department of Psychology, University of Allahabad, India

5. American Disability Act 1991, www.disabilityinfo.org.

6. Ann Darnbrough (2003), Disabled Women in Society: A Personal Overview, in AshaHans and Annie Patri (eds.), Women, Disability and Identity, Page 149, SagePublication.

7. Bhambani Meenu (2003), Societal Responses to Women with Disabilities in India,in Asha Hans and Annie Patri (eds.), Women, Disability and Identity, Pages 77-78,Sage Publication.

8. E. Helander (1982); Prejudice and Dignity: An Introduction to Community basedRehabilitation, UNDP.

9. Foundation for Research in Health Systems, Health Monitor, various issues.

10. Javed Abidi (2004), This Country has to Change in David Bornstein (ed.), How toChange the World, Chapter 17, Pages 210-216 and 222, Oxford University Press,New York.

11. Madhumita Puri and Rama Chari (2001), Disability to be included in Census 2001in Equity, Vol. 3, Issue 4, January 2001.

12. Meenakshi Thappan (2003) Marriage, Well-being and Agency Among Women,Gender and Development, Volume 11, No. 2, Page 77, Oxfam.

13. Menaka Gandhi (2000), Face to Face, Health for the Millions, Nov-Dec 2000 issue,Pages. 4-7.

14. Mike Oliver (2005), Re-defining disability: A challenge to research in John Swain,Vic Finkelstein, Sally French and Mike Oliver (eds.), Disabling Barriers – EnablingEnvironments, Sage Publications.

15. Ministry of Law, Justice and Company Affairs, New Delhi (1996), The Persons withDisabilities (Equal Opportunities, Protection of Rights and Full Participation) Act,1995, The Gazette of India,Extraordinary, Part II, Section 1, January 1, 1996.

16. NCPEDP; Bare Facts, www.ncpedp.org.

17. Oliver Barnes (2005), Discrimination, Disability and Welfare: from Needs to Rightsin John Swain, Vic Finkelstein, Sally French and Mike Oliver (eds.), Disabling Barriers– Enabling Environments, Sage Publications.

18. Peter Colderidge (1993), Disability, Liberation and Environment, Oxfam.

19. Pritha Sen, et. al (1998), Trying to Grow in Outlook, 22 June 1998.

20. Prof. S. Balaram (1999), Barrier Free Architechure in IA&B, Nov. 1999.

21. Rama Chari (2001), The Census 2001 and Disability, Health for the Millions,November-December, 2001, Page 8.

22. Sheila Dhir (1999), Why Are You Afraid to Hold My Hand, Tulika.

23. Sindhu Menon (2001), Jobs are there but out of reach, Labour File, October-November 2001.

24. UNNATI, (1999), The State of Our Primary Health Centres, Chapter III, Page 8.

This booklet has been jointly published by UNNATI - Organisation for DevelopmentEducation and Handicap International.

UNNATI - Organisation for Development Education is a voluntary non-profitorganisation. It was registered under the Societies Registration Act (1860) in1990. Currently, it is engaged in providing strategic issue-based support todevelopment initiatives in Gujarat and Rajasthan. The primary aim is to promotesocial inclusion and democratic governance so that the vulnerable sectionsof our society are empowered to effectively participate in the mainstreamdevelopment and decision-making processes.

The above aim is accomplished through undertaking collaborative research,public education, advocacy, direct field-level mobilisation and implementationwith multiple stakeholders. While it works at the grassroot level to policy levelenvironment for ensuring basic rights of citizens, it derives inspiration fromthe struggles of the vulnerable and strength from the partners.

HANDICAP INTERNATIONAL (HI) is an international non-governmentorganisation present in India since 1988. HI works to support actions towardsan inclusive, barrier-free and rights-based society for persons with disabilitiesand other vulnerable persons in India.

To this end HI works with people*, local and international organisations andGovernments which share the vision of an inclusive society where vulnerablepeople have equal rights and opportunities and live their lives with dignity,experience joy as well as a sense of fulfilment, irrespective of the cause,nature and the environment underlying the situation.

*People are understood to include people with disabilities and other persons in situations of vulnerability,their families and their communities, irrespective of religion, caste or creed.

��

ORGANISATION FOR DEVELOPMENT EDUCATIONG-1/200, Azad Society, Ahmedabad-380015.

Ph : 079-26746145, 26733296E-mail: [email protected]

Handicap International1, Panchjyot Society, Hasmukh Colony Char Rasta,

Nr. Vijaynagar Petrol Pump, Naranpura, Ahmedabad-380013.Ph: 079-55425646. E-mail: [email protected]

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