Behinderung und internationale Entwicklung Disability and ...

23. JAHRGANG AUSGABE 3/201223ND YEAR ISSUE 3/2012Behinderung und internationale EntwicklungDisability andInternational DevelopmentHistorie der BehindertenbewegungHistory of the Disability Rights Movement

E DITORIALEditorialLiebe Leserinnen und Leser,zunehmendes Engagement internationaler und dieEntstehung lokaler NGOs haben seit den 1970er-Jahrenzum Wachstum sozialer Bewegungen um Ethnizität,Gender, Behinderung etc. beigetragen. Insbesonderedie Frauenbewegung, die UN-Dekade der Menschenmit Behinderungen und mehr politischer Raum fürmarginalisierte Gruppen haben weltweit das Wachstumder Behindertenrechtsbewegung mit befördert: AlsReaktion auf Exklusion und Diskriminierung haben sichAktivistInnen mit Behinderungen formiert, um ihre politischen,rechtlichen und sozialen Anliegen vorzubringen,was zu zunehmender gesellschaftlicher Sensibilisierungfür Rechte von Menschen mit Behinderungengeführt hat. Mit der Verankerung der Bedeutung vonOrganisationen von Menschen mit Behinderungen inder BRK hat diese als treibende Kraft in der Förderungund Überwachung der Rechte von Menschen mit Behinderungenund deren Partizipation, zusätzliche Impulsein der Entwicklungspolitik und der Planung vonEntwicklungsvorhaben geliefertDie Bildung von Gruppen allgemein, insbesondereaber von Dachorganisationen ist angesichts der Komplexitätdes Gegenstands jedoch nicht einfach: Behinderungist ein Querschnittsthema über Grenzen vonz.B. Ethnizität, Gender, Lebensalter und sozialenSchichten hinweg und die gesellschaftliche Gruppe vonMenschen mit Behinderungen sehr divers, z.B. im Hinblickauf Beeinträchtigungsart und Lebensumfeld mitentsprechend diversen Erfahrungen, Anliegen und Problemen.Dem zu Folge unterscheiden sich auch dieGruppen und Organisationen in Zielen, Ansätzen undMitgliederzusammensetzung, unterschiedlich beeinflusstdurch den jeweiligen sozialen, politischen, undideologischen Kontext mit lokalen Chancen und Herausforderungenin unterschiedlichen Ländern. Vor demHintergrund dieser Diversität soll in dieser Ausgabe mitBeispielen aus Indien, Uganda und Äthiopien die uneinheitlicheund facettenreiche Geschichte der Behindertenrechtsbewegungsowie Selbstvertretung vonMenschen mit Behinderungen illustriert werden.Mit der aktuellen Ausgabe verlassen gleich drei verdienteKollegInnen die Redaktionsgruppe. Mit großemEngagement haben sie neben ihrer beruflichen Tätigkeitdazu beigetragen, dass die Zeitschrift regelmäßigerscheinen konnte. Gleichzeitig war es ihnen ein wichtigesAnliegen, die Qualität der Zeitschrift zu verbessern.Der Herausgeber dieser Zeitschrift dankt denausscheidenden Redaktionsmitgliedern Stefan Lorenzkowski,Mirella Schwinge und Susanne Wilm sehr für ihrjahrelanges und unermüdliches Engagement und bemühtsich derzeit um die Zusammenstellung einer neuenRedaktionsgruppe.Ihre RedaktionsgruppeDear Reader,Since the 1970s greater participation of INGOs andthe emergence of local NGOs contributed to thegrowth of social justice movements, raising issues ofethnicity, gender, disability etc. Particularly thewomen’s movement, the presence of internationalagencies which provided more space for (political) mobilisationof marginalised groups and the UN Decadeof Disabled Persons facilitated the rise of the disabilityrights movement across the world: Responding to exclusionand discrimination, activists with disabilitiesformed groups and organisations to claim their political,legal and social objectives, increasingly risingawareness on disability rights. The CRPD created additionalmomentum, stipulating the role of organisationsof persons with disabilities as a driving force in thepromotion and monitoring of the rights of persons withdisabilities and their participation in developmentplanning & policy making.Given the complexity of the issue, forming groups ingeneral and cross-disability umbrellas in particularhasn’t been a simple possibility: Disability cuts acrossethnicity, gender, age, class divisions etc. Persons withdisabilities are a diverse group, e.g. in terms of theirimpairment and the environment they live in, withequally heterogeneous experiences and needs. Likewise,groups and organisations of persons with disabilitiesvary in terms of their mandate, approach andmembership. In addition, the movement in the differentcountries is shaped by ideological influences, thesocial and political contexts and local opportunitiesand challenges. It is in this diverse context that this issueaims to illuminate the chequered and multifacetedhistory of the disability rights movement and self-advocacyof persons with disabilities in low income countries,presenting examples from India, Uganda andEthiopia.With the current issue three longstanding members –Stefan Lorenzkowski, Mirella Schwinge, and SusanneWilm – are leaving. With great dedication they contributedto the regular publication, quality assurance andimprovement of this journal. The publisher would liketo express her gratitude for years of tireless efforts andcurrently attempts to form a new editorial group.Your editorial boardBehinderung und internationale Entwicklung 3/2012Disability and International Development3

A RTIKEL/ARTICLEDisability Rights Movement in India:Emerging Methods of Advocacy and Trends Jagdish ChanderDespite its hierarchical and caste bound character, the Indian society has lately been witnessing the emergenceout of the shadows of silent groups like women and the disabled. The passing of the first comprehensive disabilityrights legislation, popularly known as the PWD Act, 1995, is an example of the success of the movement of thedisabled for their rights. Following the passage of this Act in 1995, the nature of disability rights movement underwenta change with the emergence of cross-disability alliance and the broadening of the agenda of struggle aswell as the adoption of new methods of advocacy period. This article analyzes this change in the nature of disabilityrights movement with reference to the changing methods of advocacy as well as recent trends in the disabilityrights movement in India during the post-1995 period.Changing Methods of Advocacy:Struggle from the Streets to Courts,Quasi-Judicial Bodies and the Useof InternetThe passage of the PWD Act created a strongplatform to enable disabled activists and theirallies to approach the courts and quasi-judicialbodies. This law began to be used as an instrumentto approach these institutions to addressthe issue of rights of the disabled people. Thedisabled activists along with their allies startedto make frequent use of this law both on an individualbasis as well as through advocacy organisations.The existence of the PWD Act enabledthe disabled activists to have a strong basisfor engaging in a struggle to press for therealisation of their rights in various spheres oflife through implementation of its provisions.Thus, in the post-1995 period, law has becomean instrument that can be used by any disabledperson covered under it to seek the realisationof his or her rights.As mandated in chapter XII of this law (PWDAct: Section 57, chapter XII) the Chief Commissioneron Disability (CCD), a quasi-judicialbody, was established in 1998 to look into complaintsregarding violations of the provisionscontained in this law (Office of the Chief Commissionerfor Persons with Disabilities 2008: 1).Subsequently, comparable counterparts werealso established in various states (Office of theChief Commissioner for Persons with Disabilities2008: 1). Similarly, the PWD Act was alsoused by advocates to approach the courts in Indiato seek the realisation of the rights of thedisabled in accordance with its provisions (DisabilityManual 2005). At the same time, accessto the Internet enabled the English educateddisabled activists to connect with each otherand lobby for implementation of the law in aunified manner. Thus, prior to the passing ofthe PWD Act the disabled activists (particularlythe blind activists as the movement then waspredominantly led by the blind) primarily reliedon traditional methods of advocacy involvingwhat Barnatt and Scotch (2001) describe as“contentious politics” or “contentious politicalaction” which included sit-ins, rallies, roadblocs, relay and indefinite strikes etc. However,the post-1995 period witnessed the continuationof struggle through new means, such ascourt cases, filing complaints in the offices ofthe State Commissioners and Chief Commissioneron Disability, and use of the Internet.While contentious political action such asrallies and picketing took place sporadically, filingof law suits in the Courts of India and complaintsin the offices of various quasi-judicialbodies, namely the State Commissioners onDisability, the CCD, and the National HumanRights Commission, were adopted as an importantmeans of advocacy. Therefore, as a resultof the use of the PWD Act as a tool to advocatefor their rights, the post-1995 periodwas characterised by the use of a combinationof methods of advocacy ranging from traditionalcontentious political action to legal approaches.As elaborated in the next section, a numberof lawsuits were filed by disability rights organisationspredominantly including the organisationof the blind, deaf and the wheelchair usersas well as individual disabled people in variousHigh Courts and the Supreme Court of India inthe post-1995 period. This is not to say that thedisabled did not approach the courts in the pastfor their rights. There were a few lawsuits relatingto the issue of disabled people’s right toemployment filed under the general principle ofright to equality enshrined in the Constitutionof India (Constitution of India 2004: 7-8) befo-4Behinderung und internationale Entwicklung 3/2012Disability and International Development

A RTIKEL/ARTICLEre the PWD Act was passed.However, it should be emphasised that, priorto passage of the PWD Act, it was only in raresituations that the activists approached thecourts to deal with the issue of discriminationand they primarily relied on contentious politicalaction to advocate for their rights. In additionto the use of law as an instrument for therealisation of the rights of the disabled in thepost-1995 period, it is worth noting thatanother important development which tookplace during this period in India, particularlysince the first decade of the 21 st century, is theproliferation of Internet services and their usageby disabled people, particularly the blind activists.The advent of Internet services brought greatchange around the world and access to theWorld Wide Web and use of e-mail has beenimmensely influential in promoting the mobilisationof the disabled in the United States inthe process of the struggle for their rights (Barnatt/Scotch2001: 214); in particular, in India, ithas helped the English-educated blind to be informedof developments at the internationallevel and promoted interaction among the blindactivists and their allies. The use of the Internethas thus enabled blind activists in India to exchangetheir ideas through e-mails, and to gainaccess to a wealth of information in electronicformat through the use of screen reading software.Several e-mail groups have been establishedby blind people in India to exchange ideas witheach other related to specific areas of interest.One such group is the access India YahooGroup; it was originally created on January4 th 2001, for blind computer users to discusscomputer-related issues (Access India 2011).But over a period of time, the scope of discussionhas expanded significantly. The Group has avery wide membership, which has connected abig group of blind people as well as their alliesas it has now been joined by a large number ofsubscribers who regularly exchange their ideasand share relevant information among themselves.It has now become a forum for blind peopleas well as sighted allies working in thefield of blindness from different parts of thecountry to exchange ideas on numerous issuesincluding the issues of employment discrimination,obstacles to education, and the like. It hashelped blind people join forces in order to dealwith discrimination on the basis of blindnessand implementation of the provisions of PWDAct, as well as initiating discussion of issues relatingto the rights of the disabled not coveredin this Act (Access India 2011).The availability of e-mail groups like the AccessIndia Yahoo Group as well as other YahooGroups and Google Groups has enabled blindpeople to exchange legal documents and towork collaboratively on the filing of law suits invarious High Courts and the Supreme Court aswell as on complaints to be registered in the officesof the Chief Commissioner and the StateCommissioners on Disability. The access to e­mail has also facilitated their correspondencewith government authorities, particularly whenthe lobbying for the revised disability law to replacethe PWD Act has been going on recently.Hence, access to the Internet has in a numberof ways enhanced the advocacy efforts of theblind in India.In addition to the beginning of new methodsof advocacy, the post-1995 period also witnesseda change in the nature of the disabilityrights movement in India. There are discernabletrends that are distinguishable from trends inthe earlier phases of this movement. The mostimportant identifiable trend that distinguishesthe nature of the disability right movement duringthe post-1995 period from the pre-1995period is the broadening of the agenda ofstruggle and cross-disability participation aswell as the acceptance of advocacy approachby middle-class disabled members leading to achange of their attitude toward advocacy. Sincethe PWD Act ensured a wide range of rights ofthe disabled in India, blind as well as otherdisability groups have now been getting a widerange of rights realised through implementationof the Act. This period has also witnessed anemergence of other disability groups that haveadopted an advocacy approach and significantlycontributed in providing a cross-disabilitycharacter to this movement. Therefore, whatfollows next is an analysis of the recent trendsin the disability rights movement in India in thepost-1995 period due to the broadening of theagenda of struggle and the increasing participationof cross-disability rights groups. This isfollowed by a discussion of acceptance of theadvocacy approach by the middle-class disabledmembers through an example of the compositionof the Disability Rights Group, the firstcross-disability alliance formed in the capitalcity of Delhi during early 1990s.Broadening the Agenda of theStruggle for Rights and Emergenceof a Cross-Disability Character ofthe MovementWhile there was always some sort of overlappingof issues for which struggle was carriedBehinderung und internationale Entwicklung 3/2012Disability and International Development5

A RTIKEL/ARTICLEout in the pre-1995 period, the focus was basicallyon a specific demand and the movementwas led by an impairment-specific group, particularlythe blind activists. Thus, while the foundersof the National Federation of the Blind(which spearheaded the self-advocacy movementof blind in India) were primarily focusedon organisation building and engaged in mildforms of advocacy during the 1970s, thestruggle for right to employment and the enactmentof a disability law became the focal pointsof agenda of advocacy by them during the1980sand early 1990s respectively.The predominant agenda of the struggle carriedout by the National Federation of the Blind(NFB) in the post-1995 period, particularlythrough contentious political action, was theimplementation of section 33 of the PWD Act,which mandated three per cent quota for thedisabled in government jobs. But it is worth emphasisingthat the struggle carried out by theNFB, as well as the other disabled people intheir individual capacity and through advocacyorganisations during this period, was very widein scope. This struggle also involved severallawsuits filed in courts and complaints registeredin the offices of various state commissionerson disability as well as the Chief Commissionerfor Persons with Disabilities. These lawsuits andcomplaints have been related to a very widerange of issues including the right to housing,access to social security, and the right to education,among others (Disability and the Law2005; Disability Manual; Office Of The ChiefCommissioner for Persons with Disabilities2008). However, it needs to be acknowledgedthat the majority of the lawsuits were still relatedto the issue of right to employment (Disabilityand the Law 2005; Disability Manual).In addition to the broadening of the agendaof struggle by the disabled activists, the post­1995 period also witnessed the increasing participationof cross-disability groups in thisstruggle. It is true that the struggle led by theblind activists since late 1980s to 1995 aimedat accomplishing an agenda that is consideredto be common to the interests of different categoriesof disability groups, namely, the passageof a comprehensive disability rights law. However,the major limitation of the self-advocacymovement of the blind prior to the passage ofthe PWD Act was that it lacked cross-disabilityparticipation. In contrast to this, the post-1995period witnessed the beginning of participationof diverse disability groups in the struggle fortheir rights; this has contributed significantly tothe enrichment of the disability rights movement.A cross-disability rights group called theDisability Rights Group (DRG) was establishedin Delhi in March 1994 (Bhambhani 2004). Thismarked the beginning of a cross-disabilityrights alliance. While the NFB continues as aleading advocacy organisation addressing issuesregarding the rights of blind people, increasedparticipation of diverse disability groups,particularly the DRG, has made a significantcontribution in strengthening this movement.One of the leading member of DRG at thetime of its founding in March 1994 was JavedAbidi, who happened to be a wheelchair user.Abidi was then heading the Disability Divisionof the Rajiv Gandhi Foundation, a foundationestablished by the family of the former PrimeMinister of India in 1991 to carry out philanthropicwork (Rajiv Gandhi Foundation 2011).Yet another leading member at the time of itsfounding was Lal Advani who had spearheadedthe process of rehabilitation in the field of disabilityin India as a civil servant (Chander/Baquer 2005: 4). The other core group membersof DRG at the time of its founding includedSarvjit Singh, a wheelchair user, who was thenserving as a high level civil servant in the Ministryof Railways, Ali Baquer who was headingan NGO engaged in the field of intellectualdisabilities, and Jagdish Chander, a blind professorin the University of Delhi (Chander/Baquer 2005: 4-5). This composition of thecore group of DRG at the time of its founding in1994 reflects the fact that there was beginningof a cross-disability alliance. It is also symbolicof a significant change in the approach ofmiddle-class professionals engaged in theNGOs working in the field of disability, in contrastto their traditional approach of disregardfor the contentious political action adopted byradical advocacy organisations like the NFB.The contribution of the DRG is particularlycrucial in two ways: First, the DRG succeeded inwidening the scope of issues concerning variouscategories of disabled as it actively advocatedfor the rights of cross-disability groups insteadof focusing on the rights of any disabilityspecific group. Second, over time, DRG beganto be essentially a one-person organisation,dominated by Javed Abidi who claimed to speakon behalf of all disabled people and whomade unilateral decisions. But it must beacknowledged that this was for the first timethat disabled activists with different types ofdisabilities had come together to advocate fortheir rights (Ray 2001). Some of the commonissues addressed by DRG through contentiouspolitical action included:- Appointment of the Chief Commissioner on6Behinderung und internationale Entwicklung 3/2012Disability and International Development

A RTIKEL/ARTICLEDisability in 1997 (Bhambhani 2004: 45);- Inclusion of the disabled in the 2001 census(Disability Rights Group to Strike Over CensusIssue 2000);- Raising the limit of the income tax exemptionfor disabled people and parents of disabledchildren (Disabled Rights Activists Rally toAwaken Centre 2002);- Exemption of customs/excise duties on aidsand appliances used by the disabled (Rally toMake Govt. See Reason 2003);- Right to accessible voting (Abidi to Fast UntoDeath Over EC’s Attitude 2004; Dharna MovesElection Commission to Action 2004;Protest Outside EC Office: Several ActivistsDetained 2004);- Opposition to appointment of able bodiedprofessionals as the head of the apex levelinstitutions in the field of disability like CCD,the Rehabilitation Council of India, and theNational Trust for Welfare of Persons withAutism, Cerebral Palsy, Mental Retardationand Multiple Disabilities (Bhambhani 2004:50-52).ConclusionIn this paper, I have argued that, following thepassage of the PWD Act, the disability rightsmovement in India witnessed the emergence ofnew trends in the post-1995 period. This periodhas been marked by a beginning of participationof different disability groups as well as advocacyfor an expanding horizon of issues relatingto the rights of the disabled through thetraditional as well as new methods of advocacythrough an increase in use of courts to litigaterights in India. This period also witnessed adrastic change in the attitude of the NGOs operatingin the field of disability towards the advocacy-orientedapproach. Thus, the rights basedperspective is now widely embraced by thecurrent generation of disability rights activistsfrom cross-sections of disability and the nongovernmentalorganisations. This perspectivehas evolved as a well-established and internalisedapproach that dominates the thinking ofthe disabled activists. It is likely to strengthenover time as it crystallises at the national andinternational levels. Disabled people are, therefore,no longer going to be passive recipients ofservices. Rather, they are active advocates fortheir rights and will emerge as the masters oftheir destiny.ReferencesBAQUER, A./SHARMA, A. (1997): Disability: Challengesvs. responses. Concerned Action Now: New DelhiBARNARTT, S./SCOTCH, R. (2001): Disability protests:Contentious politics 1970-1999. Gallaudet University:Washington, DCBHAMBHANI, M. (2004): From charity to self-advocacy:The emergence of disability rights movement in India.Unpublished master's thesis, University of Illinois: Chicago.CHANDER, J./BAQUER, A. (2005): Lal Advani: The torchbearer. Indian Association for Special Education andRehabilitation: DelhiDESOUZA, D. (2005): Disability and the law. NationalHuman Rights Law Network: New Delhi, p. 163.DISABILITY NEWS AND INFORMATION SERVICE. Vol. 2,Issue 19 (October 01, 2004): Dharna moves ElectionCommission to action. Retrieved on July 4, 2009 fromwww.dnis.org/index-2.php?issue_id=19&volume_id=2DISABILITY NEWS AND INFORMATION SERVICE. Vol. 2,Issue 9 (May 01, 2004): Protest outside EC office: severalactivists detained. Retrieved on July 4, 2009from www.dnis.org/index-2.php?issue_id=9&volume_id=2GOVERNMENT OF INDIA (1996): The Persons with Disabilities(Equal Opportunities, Protection of Rights andFull Participation) Act, 1995. Ministry of Law, Justiceand Company Affairs: New DelhiGOVERNMENT OF INDIA (2004): Constitution Of India(2 nd pocket ed.): New DelhiINDIAN EXPRESS (2002, May 7): Disabled rights activistsrally to awaken Centre. Retrieved on June 30, 2009from http://cities.expressindia.com/fullstory.php?newsid=16875MENON, S. (2000, April 19): Disability rights group tostrike over Census issue. In: Indian Express. Retrievedon June 30, 2009 from: www.indianexpress.com/ie/daily/20000419/ina19045.htmlNATIONAL HUMAN RIGHTS COMMISSION (2005). DisabilityManual: New DelhiOFFICE OF THE CHIEF COMMISSIONER FOR PERSONSWITH DISABILITIES (2008). Case Law Reporter. Vol.1,(1999 – 2002): New DelhiOFFICE OF THE CHIEF COMMISSIONER FOR PERSONSWITH DISABILITIES (2008). Case Law Reporter, Vol. 2,(2003 – 2004): New DelhiOFFICE OF THE CHIEF COMMISSIONER FOR PERSONSWITH DISABILITIES (2008). Case Law Reporter, Vol. 3,(2005 – 2006): New DelhiRAY, A. (2001): Giving Visibility to the Disabled in India.Changemakers.net Journal. January, 2001. Retrievedon June 28, 2009 from: http://proxied.changemakers.net/journal/01january/ray.cfmTHE HINDU (2004): Abidi to fast unto death over ec’s attitude.Retrieved on July 3, 2009 fromwww.hinduonnet.com/2004/04/14/stories/2004041409260400.htmBehinderung und internationale Entwicklung 3/2012Disability and International Development7

A RTIKEL/ARTICLETHE HINDU (2001): Rally to make Govt. see reason. Retrievedon June 28, 2009 from www.hinduonnet.com/2003/02/17/stories/2003021707080400.htmZusammenfassung: Trotz seines hierarchischen und kastengebundenenCharakters hat Indiens Gesellschaft in denletzten Jahren das Heraustreten aus dem Schatten von stillenGruppen wie Frauen und Menschen mit Behinderungmiterlebt. Die Verabschiedung der ersten umfassenden Gesetzgebungfür die Rechte von Menschen mit Behinderung,allgemein bekannt als der PWD Act, 1995, ist ein Beispielfür den Erfolg der Bewegung behinderter Menschen fürihre Rechte. Im Anschluss an die Verabschiedung diesesGesetzes 1995 hat die Art der Behindertenrechtsbewegungmit der Entstehung von Verbindungsnetzen und der Ausweitungder allgemeinen Anstrengungen als auch durch dieEinführung neuer Methoden des Zeitalters der Interessensvertretungeine Veränderung erlebt. Dieser Artikel untersuchtdiesen Wandel in der Art der Behindertenrechtsbewegungmit Bezug auf verschiedene Methoden von Interessensvertretenals auch die jüngeren Entwicklungen in derBehindertenrechtsbewegung in Indien während der Periodenach 1995.Résumé: Malgré son organisation hiérarchique et liée auxcastes, la société indienne a vu ces derniers temps desgroupes silencieux comme les femmes et les personneshandicapées sortir de l’ombre. La promulgation de la premièrelégislation complète sur les droits des personnes handicapées,communément connue comme le PWD Act de1995, est un exemple du succès du mouvement des personneshandicapées en faveur de leurs droits. Suite à lapromulgation de cette loi en 1995, la nature du mouvementpour les droits des personnes handicapées a changé,avec l’apparition d’une alliance inter-handicap et l’élargissementdes thèmes de lutte ainsi que l’adoption de nouvellesméthodes de plaidoyer. Cet article analyse ce changementen faisant référence aux changements de méthodesde plaidoyer ainsi qu’aux tendances récentes du mouvementpour les droits des personnes handicapées en Indedepuis 1995.Resumen: A pesar de su carácter jerárquico y de castas, lasociedad hindú ha sido testiga recientemente de que silenciososgrupos tales como el de las mujeres y los discapacitadoshan salido de las sombras. La aprobación de la primeraley general sobre discapacidad, popularmente conocidacomo PWD Act, es un ejemplo del éxito del movimientode personas con discapacidad en su lucha por sus derechos.Después de la aprobación de esta ley, cambió lanaturaleza de los movimientos por los derechos de las personascon discapacidad por el surgimiento de alianzas integralesy la introducción de nuevos métodos de persuasión.En este artículo se analiza el cambio en relación a los nuevosmétodos de estos grupos para defender sus intereses,así como también las tendencias recientes en el movimientode la discapacidad en el período posterior a 1995.Author: Jagdish Chander is an Associate Professor inthe Department of Political Science, Hindu College,University of Delhi, Delhi, 110007.Contact: jagdish100@gmail.com.8Behinderung und internationale Entwicklung 3/2012Disability and International Development

A RTIKEL/ARTICLEHuman Rights-Based Approach in theUgandan Disability Movement: A Fairy Tale ofSelf-Determination and Self-Advocacy?Hisayo Katsui/Jukka KumpuvuoriThis article is based on findings from the research project entitled, Human Rights-Based Approach to Disabilityand Development: Interplay of Disability-Sensitive Development Cooperation and National Policy in Uganda between2007 and 2012. This is a multi-disciplinary project. Particular focus of this article is on ownership and prerequisites,without which self-advocacy work of persons with disabilities and their organisations (DPOs) is extremelydifficult. The article starts by exploring the Ugandan disability movement. Subsequently a case study on UgandanMembers of Parliament as a form of representative democracy and its downside is introduced. The articleconcludes with some considerations on how self-determination and self-advocacy of persons with disabilities inUganda could be promoted, including a future research agenda. All the arguments are based on empirical studyfindings under the aforementioned research project.Development of the Ugandan DisabilityMovementIn Uganda, the disability organisations startedto be established during the 1970s. The idea offorming a national umbrella organisation ofpersons with disabilities started around 1976,but was hindered by the war between Ugandaand Tanzania from 1979 to1987. In 1987, personswith disabilities in the Ruti RehabilitationCentre in Mbarara and the Kireka RehabilitationCentre in Kampala realised the idea of formingthe organisation as the National Union ofDisabled Persons of Uganda (NUDIPU) (Ndeezi2004: 10-11). 17 DPOs joined NUDIPU. Thiswas the first of its kind in the African continent(ibid.: 12). Without assets and money, voluntarywork and contributions of members enabledthe activities in the beginning. This spirit is saidto have led the NUDIPU into “one of the strongestnational advocacy and lobbying organisationschampioning the cause of marginalisedgroups in Uganda” (ibid.: 17).Already in the beginning of the disabilitymovement, Ugandan DPOs applied a humanrights-based approach in their activities (DSI2007: 21; Lang/Murangira 2009: 36). The AffirmativeAction Policy 1989, for instance, promotedrepresentation of marginalised groupsincluding persons with disabilities to upliftthem. In the Constituent Assembly for the formationof the Constitution in 1995, the late EliphazMazima, a disability activist with a physicalimpairment and the first elected chairpersonof the NUDIPU represented persons with disabilities.As a result, the Constitution includedmany clauses related to persons with disabilities.Consequently, the Constitution (1995) is citedas a “human rights charter” (Mawa 2003).That is, they were applying a human rights-basedapproach even before they started to engagein development cooperation. This is an importantpiece of fact that is against the understandingthat human rights discourse comesfrom the North (Kennedy 2004: 18; Uvin 2004:17). In other words, it is misleading to presumethat a human rights-based approach is an exclusivelyNorthern concept. The Ugandan disabilitymovement has deliberately used this approachfor making political space even beforethe era of the UN Convention on the Rights ofPersons with Disabilities.The main achievements of the Ugandandisability movement include political representation.After the enactment of the Local GovernmentAct of 1997, affirmative action policyhas been introduced for politically marginalisedgroups including women, persons with disabilities,youth, workers and members of the army.Since then, all those groups are represented inUgandan politics at all levels including the Parliament.Uganda has a quota system where fiveMembers of Parliament represent persons withdisabilities: Four Members of Parliament fromfour regions (Central, East, West, North) andone woman with a disability. An interesting factis that in the 2011 election, two women withdisabilities stood for the positions outside of thedisability quota framework and also passedthrough (Margaret Baba Diri and Jessica Ababiku).Therefore, there are seven persons withdisabilities in the Parliament linked to the disabilitymovement today. Moreover, over 50,000disabled councillors work in the local governmentstructure (Lang/Murangira 2009: 37), ofwhich half are women with disabilities at districtand sub-county levels, while parish and villageBehinderung und internationale Entwicklung 3/2012Disability and International Development9

A RTIKEL/ARTICLEhave only one councillor representing personswith disabilities. That means, persons with disabilitieswere identified, mobilised and organisedfor elections (Ministry of Finance 2008: 122),which in itself has significant implications.“However, apart from the national level (parliament),at the lower levels representatives ofpersons with disabilities have not been successfulin influencing decisions due to poor leadershipand lobbying skills” (DSI 2007: 13).In 1998, the State Minister for the Elderlyand Disability Affairs was created under the Ministryof Gender, Labour and Social Development.This Department addresses the issues ofdisabilities, though it is resource constrained. In2003, the National Disability Council was establishedto bridge communication gaps betweenthe government and persons with disabilities. In2006, the Persons with Disabilities Act was adoptedwhich further stipulates the rights of personswith disabilities in Uganda. The Act articulatesthat Uganda is taking a human rights-basedapproach in its laws. Consequently, manysigns of improvement on the grassroots havebeen observed over time (Ministry of Finance2008: 104-107). Nevertheless, the majority ofpersons with disabilities remain unaffected(ibid.: 107) and implementation gaps are observed(Lang/Murangira 2009: 6). The MinistryReport (2008) introduces cases in which thecouncillors with disabilities “face with an uphilltask” as their proposals are “watered down as‘un-researched’ and in many cases they do notget implemented.” The comparison on expenditurein fiscal year 2007-2008 between differentNational Councils for Children (41%), Women(21%), Youth (19%) and Disability (19%) (Lang/Murangira 2009: 21) implies low priority ofdisability in the government. In some cases,persons with disabilities are not representing instatutory committees due to lack of qualificationof disability councillors (Ministry of Finance2008: 81). Socially constructed roles for womenalso hinder women with disabilities to participateactively into politics (ibid.: 82). The NationalCouncil for Disability was established to monitorall national implementations including violationsof the rights of persons with disabilities,and is supposed to have District and Sub-CountyCouncils for Disability in all districts. The fundingfor their activities even gets divertedthrough Community Development Departmentto different sub-groups [1] (ibid.: 111-112).Moreover, the councils at district levels or lowerare currently involved in implementation of policies,which is contrary to what they are supposedto do. In 2006, a National Policy of Disabilityin Uganda was also issued by the Ministry ofGender, Labour and Social Development. Thevisibility of persons with disabilities in the politicalspace is an outstanding achievement of thedisability movement in Uganda. Mainstreamingdisability into politics succeeded in empowermentof persons with disabilities and reducingstigma against them particularly right after1997 (Ministry of Finance 2008: 83), althoughthe introduction of the multiparty politics in2006 fragmented the disability movement tosome extent. For instance, when he changedhis political affiliation to an opposition party, along-standing Member of Parliament lost in theelection of 2006 despite of his popularityamong the disability movement. “The challengeof the government is that it looks at NUDIPU asthe key stakeholder in it, because when we approachthem, they say, ‘But what is NUDIPUdoing? This is their work.’ But you know, NUDI­PU cannot reach each and everywhere, up tothe last person in the village”[1]. Lack of clearguidance confused their roles and mandates,which has created the vacuum of monitoringand implementation mechanism and consequentlyresulted in little implementation of relevantlaws and policies for persons with disabilities.DPOs, with the donor community, are expectedto fill the huge gap between laws andimplementation [2]. These are a few of themany practical challenges in general to theoperationalisation of a human rights-based approachin the political practices, which will beinvestigated further in the following case on representativedemocracy and self-advocacy activitiesagainst the election practice of Membersof Parliament representing persons with disabilities.Case Study on Representationby Members of Parliament andits DownsideThe representative democracy has been perpetuatedin the Ugandan disability movementwith a number of reinforcing factors. One ofthe main factors is the heterogeneity of personswith disabilities which is challenging to fully recognise,while uniting voices of different categoriesof persons with disabilities is a usefulstrategy for making their voices heard. Secondly,the history of social movement is repeatedin the Ugandan disability movement pertainingto “The Law of Michels’, the Iron Law ofOligarchisation” (Michels 1911 cited in vanHouten/Jacobs 2005). Van Houten and Jacobs(2005: 648) claim that social movement requires“a more bureaucratic form of leadershipand some degree of specialisation and division10Behinderung und internationale Entwicklung 3/2012Disability and International Development

A RTIKEL/ARTICLEof labour” when gaining power and strengtheningitself. Thirdly, development cooperationsystem that is largely controlled by donors hasbeen pressuring the Ugandan disability movementto make decisions quickly and efficientlywhich is possible only by representatives.Fourthly, when it comes to legal system, it alsorequires certain procedures which are not oftenaccessible for a majority of Ugandan personswith disabilities. People in Uganda are generallyafraid to go to court (Ssengooba 2010) [3]and rather settle the cases out of court becausethey are too poor and some are illiterate, whichhelps to explain why there are so few courtcases on disability rights. It can be argued thatthe incapability of the legal system to meet theneeds and concerns of persons with disabilitieshas been one of the reasons for the emphasison the popularity of the representative politicalsystem described above.The political representation is definitely oneof the biggest achievements of the Ugandandisability movement to date. Nevertheless, themajority of persons with disabilities at thegrassroots still live in disabling environment. Inother words, self-advocacy has been largelyguaranteed by representatives of persons withdisabilities only and not by many of their constituencieson the grassroots. In this regard, thispolitical representation might be even contributingto reinforce the status quo with or withoutintention. On the one hand, the Members ofParliament have been making impacts for disabilityrights at the national level especially regardinglaw and policy enactment. On theother hand, the research project also observedthe downside of the too powerful Members ofParliament in Uganda. This part elaboratesmainly on this downside of the representativedemocracy and their elections in the Ugandanmovement today.Some Members of Parliament are playingbig roles in the disability movement becausethey have very often experiences as chairpersonsor board members in DPOs. As the NUDI­PU electoral structure for its election for boardmembers has been utilised for the nationalelection for Members of Parliament representingpersons with disabilities, board members ofNUDIPU are likely to be elected by the samevoters for elections of Members of Parliament.Hence, there have been visible interventions onDPOs by the Members of Parliament, particularlyon general assemblies of NUDIPU. Manyanonymous informants who were the delegatesof the general assembly of NUDIPU in 2008 expressedthat some Members of Parliament campaignfor candidates who would not threatentheir positions as the Members of Parliament inthe following national election. More precisely,the Members of Parliament bribed many delegatesto vote for certain candidates for such individualgains rather than for the collective gainto develop and strengthen the Ugandan disabilitymovement further.Moreover, the voters are composed of fourdelegates from 56 districts following the old districtsystem, while currently there are 112 districts.The four delegates should consist of aperson with a physical impairment, a blind, adeaf and a woman. In the general assembly ofNUDIPU in 2008, there were 243 eligible voterspresent, of which 113 were women. 116were categorised as persons with physical impairments,59 blind, 57 deaf and one representedthree DPOs, namely Mental Health Uganda(MHU), Epilepsy Support Association of Uganda(ESAU) and Uganda Parents Association forChildren with Learning Difficulties (UPACLED).Outgoing board members also had the right tovote, while two votes were additionally entitledto deaf and blind representatives each to giveaffirmative action to balance the dominance ofpersons with physical impairments. Accordingto this electoral structure, many persons withother disabilities such as persons with psychosocialand intellectual disabilities are largely excludedin a systematic manner. At the sametime, the number of voters is too few to representa vast number of persons with disabilitiesin Uganda which is estimated to be as high as20% of the population in the Uganda Demographicand Health Survey 2006. That is to say,the level of representation achieved by this representativedemocracy is questionable. In theaforementioned General Assembly, this wasquestioned but did not change the Constitutionof NUDIPU to accommodate more voters. Thisdecision is of benefit to the Members of Parliamentfirstly because it will not enlarge candidacyto persons with other disabilities and secondlybecause their supporters remain thesame.There are people trying to tackle the abovementioneddeficiencies of the system. In 2006,there was also an electoral petition by threecandidates that ran in the parliamentary elections;they alleged that the elections were notfree and fair. Later, in September 2010, theConstitutional Petition No. 40/2010 “by theDisability Movement to the Parliament of Ugandafor the amendment of Laws and Regulationsproviding for the electoral procedures for Parliamentaryand Local Council representatives ofpersons with disabilities”, prepared by a DPOLegal Action for Persons with Disabilities Ugan-Behinderung und internationale Entwicklung 3/2012Disability and International Development11

A RTIKEL/ARTICLEda (LAPD), was filed with the ConstitutionalCourt of Uganda; the petition was scheduledon 22nd July 2011. The elections have becomepolitical power games of individuals, whiledisability substance has been undermined. Inthe petition, it is stated that many clients andpartners of LAPD had expressed dissatisfactionwith the current electoral system of their representativesto the Parliament and Local Councils;this was the root cause that initiated the processtowards the petition. The purpose of thepetition is to highlight the weaknesses in theelectoral laws for representatives of personswith disabilities, as well as singling out themain challenges that persons with disabilitiesface in the electoral process.The issues pertaining to the electoral processthat were raised in the petition were twofold.The first issue the petition raises has to do withthe fact that all five Members of Parliament representingpersons with disabilities are electedby an Electoral College, as the current systemrequires formation of one National ElectoralCollege, which elects all the five Members ofParliament. According to the petition, this risesabsurdities, such as the deviation of the proceduresfrom the regulations of the Constitution(which demarcates Uganda into constituencies)and the Electoral Commission Act (which givesa right to a voter to vote in a parish or ward inwhich he or she is registered); the phenomenonthat candidates are voted on the basis of otherfactors and not expected effective representation(because the system requires delegates tovote for a candidate three quarters of whomhe/she will not represent) and; the system imposesan unnecessary burden on the candidateswho have to campaign in all the regions ofthe country (in order to get support). Accordingto the petition, the current system favours sittingMembers of Parliament and rich, well-resourcedcandidates, and that a new candidatewith minimal resources will find it difficult tosuccessfully compete.The second issue the petition raises has todo with the involvement of the NUDIPU structurein the election process. Firstly, NUDIPU is anon-governmental organisation (NGO) registeredunder the NGO Board Act and the CompaniesAct, as a company limited by guarantee,and can be wound up by a resolution of members.Furthermore, it’s internal managementand democratic practices are not provided forby law and therefore it is not, according to thepetition, suited for being part of an electoralprocess. Secondly, NUDIPU was formed by personswith disabilities as an activist organisationto fight for their rights and dignity, and thereforeits involvement in elections would, accordingto the petition, compromise the mandate forwhich it was formed. Further, the petitionargues that from past experience of previouselections, the Electoral Commission does notprovide sufficient funds to enable NUDIPU carryout election of delegates to the National ElectoralCollege and at the end of the day NUDIPUgets blamed when delegates are not properlyelected.The petition also proposes recommendationsof laws governing the electoral process, whichbasically emphasise the utilisation of SubCounty, District, Regional and National ElectoralColleges, consisting of registered voters withdisabilities. At each level it is emphasised thatas the numbers of delegates are determined bythe Electoral Commission, there needs to beconsultation with the disability movement. Thepetition also recommends that: the NationalCouncil for Disability shall draw up voters registersof the Electoral Colleges and publish themas provided in the electoral laws; affirmativeaction pertaining to women with disabilitiesshould be maintained; the relevant legislationshould be amended to reflect the changes thatare proposed in the petition and the ElectoralCommission should start early the process ofelection of representatives of persons with disabilitiesto avoid mistakes resulting from conductingelections in a hurry. At the time of the writingof this article, no date has been fixed forthe matter to be heard.Discussions and ConcludingRemarksBased on the principle of non-discrimination ina human rights-based approach, persons withdisabilities have been finally mainstreamed intohuman rights and development discourses, atleast in theory, and in the Ugandan politicalsphere in practice. The example of political representationin Uganda using the affirmativeaction policy has both positive and negative implications,based on the findings of our multidisciplinaryproject. A few negative aspectswere described above. As for the positive ones,self-determination exercised in the elections isconsidered as the sign of democratic capacity,which is not a charity but an entitlement. Personswith disabilities who are too frequentlyand disproportionally at the bottom of the socialstratification gain the decision-making powerfor their own representatives, as nondisabledpeers do. Thus ownership and participationof persons with disabilities in the form ofelection activities is a process towards mainstre-12Behinderung und internationale Entwicklung 3/2012Disability and International Development

A RTIKEL/ARTICLEaming. Many voters as well as candidates werealso empowered through role models, solidarityand/or entitlement. Experiences are mixed,which has led to discussions and dialogues ofmany stakeholders of the Ugandan disabilitymovement so as to reassure better operationalisationof its human rights-based approach. Discussionson this theme have progressed to legalaction in this specific case, though legalprocedures are not necessarily the way forward,particularly in a non-confrontational context asUganda. The article introduced this case not topromote legal action as a form of humanrights-based approach but to illuminate the linkamong self-determination, self-advocacy andinternal diversity of the Ugandan disability movement.Hence, not only the predominant twintrackapproach of empowerment and mainstreaming,but the third track of continuous andconstructive dialogues, negotiations and informationdissemination has some practical implications.The third track has been promoted bythe Finnish government particularly in the policydiscussion at the diplomacy level to includedisability into mainstream discourse (EuropeanCommission 2010: 122). However, the projects’findings highlight the significance of the thirdtrack at all levels including the grassroots leveland also within the disability movement. Furtherresearch is needed to elaborate on thisthird track to articulate prerequisites for and tosecure self-determination and self-advocacy ofpersons with disabilities.ReferencesDSI (THE DANISH COUNCIL OF ORGANISATIONS OFDISABLED PEOPLE) (2007): Country Strategy PaperUganda 2007-2011. The Danish Council of Organisationsof Disabled People: Copenhagen (unpublishedreport)EUROPEAN COMMISSION (2010): Study of Disability inEC Development Cooperationhttp://ec.europa.eu/europeaid/what/social-protection/documents/223185_disability_study_en.pdfKENNEDY, D. (2004): The Dark Sides of Virtue: ReassessingInternational Humanitarianism. University Press:PrinstonLANG, R./MURANGIRA, A. (2009): Disability ScopingStudy: Commissioned by DFID Uganda.www.ucl.ac.uk/lc-ccr/downloads/scopingstudies/dfid_ugandareportMAWA, M. (2003): Human Rights and Development inUganda: Reflections on the Constitutional Provisionsof the Right to DevelopmentMINISTRY OF FINANCE, PLANNING AND ECONOMICDEVELOPMENT. (2008): Disability and Poverty inUganda. Progress and Challenges in PEAP Implementation1997-2007. The Ugandan Government: KampalaNDEEZI, A. (2004): The Disability Movement in Uganda:Progress and Challenges with Constitutional and LegalProvisions on Disability. Oscar: Kampala. UVIN, P. (2004): Human Rights and Development. KumarianPress: BloomfieldVANHOUTEN, D./JACOBS, G. (2005): The Empowermentof Marginals: Strategic Pradoxes. Disability and Society,20(6), pp. 641-654Notes1 Acting chairperson of the National Council for Disability,personal interview by Katsui on 4.2.2008 at Kampala.2 Chairperson of the NUDIPU, personal interview byKatsui on 31.1.2008 at Kampala.3 Ssengooba, M, personal communication (e-mail) byKumpuvuori on 25.7.2010 (on file).Zusammenfassung: Dieser Artikel basiert auf Ergebnissendes Forschungsprojektes „Human Rights-Based Approach toDisability and Development: Interplay of Disability-SensitiveDevelopment Cooperation and National Policy in Uganda“im Zeitraum 2007 bis 2012. Das Projekt ist fachübergreifendund interdisziplinär angelegt. Dieser Artikel nimmt insbesonderedie Identifikation und Voraussetzungen in denBlick, ohne die eine Selbstvertretungsarbeit von Menschenmit Behinderungen und der sie repräsentierenden Organisationen(DPOs) sehr schwierig ist. Zu Beginn des Artikelswird die Ugandische Behindertenbewegung untersucht. ImWeiteren wird eine Einzelfallstudie über Mitglieder desUgandischen Parlaments als eine Form von repräsentativerDemokratie und ihrer Kehrseite vorgestellt. Der Artikel endetmit einigen Überlegungen darüber, wie Selbstbestimmungund Selbstvertretung von Menschen mit Behinderungin Uganda vorangetrieben werden kann, einschließlich einesPlans für zukünftige Forschung. Alle Erläuterungen basierenauf Ergebnissen der empirischen Studien aus demvorher genannten Forschungsprojekt.Behinderung und internationale Entwicklung 3/2012Disability and International Development13

A RTIKEL/ARTICLERésumé: Cet article se base sur les résultats de la rechercheintitulée « Approche du handicap et développementbasée sur les droits : interaction d’une coopération audéveloppement et d’une politique nationale sensible auhandicap en Ouganda », menée entre 2007 et 2012comme projet pluridisciplinaire. Le focus est mis en particuliersur l’appropriation et les préconditions sans lesquellesles tâches d’autopromotion pour les personnes handicapéeset leurs organisations (OPH) est très difficile. Cet articlecommence par explorer le mouvement des personnes handicapéesen Ouganda. Une étude de cas sur des membresdu parlement ougandais comme forme de représentationdémocratique avec ses inconvénients est présentée. L’articleconclut par des considérations sur comment l’auto-déterminationet l’autopromotion des personnes handicapées enOuganda pourraient être renforcées, y compris un calendrierpour des recherches futures. Tous les arguments sontbasés sur les résultats empiriques du projet de recherchementionné plus haut.Resumen: Este artículo se basa en los resultados de unproyecto de investigación multidisciplinario sobre la discapacidady el desarrollo en Uganda que se llevó a cabo entre2007 y 2012. El objetivo particular de este artículo serefiere a las condiciones que son necesarias para el trabajode auto-representación de las personas con discapacidad ysus organizaciones. El artículo comienza con una exploracióndel movimiento de la discapacidad en Uganda. Despuésse presenta un estudio de caso sobre los parlamentariosde Uganda como una forma de democracia representativay sus desventajas. El artículo concluye con algunasreflexiones, como en Uganda la auto-determinación yauto-defensa para las personas con discapacida puede serpromovida, incluyendo una agenda de investigación futura.Todos los argumentos se basan en los resultados empíricosdel estudio mencionado.Authors: Hisayo Katsui is a senior researcher at theInstitute for Human Rights, Åbo Akademi University,and research and development manager at AbilisFoundation, Finland. Her latest book (2012) is entitled,Disabilities, Human Rights and International Cooperation:Human Rights-Based Approach and LivedExperiences of Ugandan Women with Disabilities(Centre for Human Rights of Persons with DisabilitiesPublication Series Number 8). Currently, she is conductinga joint research project with the United NationsSpecial Rapporteur on Disability, Shuaib Chalklen,on mainstreaming disability in Africa.Jukka Kumpuvuori did his LL. M at the University ofTurku and is currently working on his doctoral thesison disability rights in Uganda at the Institute for HumanRights, Åbo Akademi University. Kumpuvuori isthe author of several reports on disability and humanrights, including those to the ILO and the Finnish Ministryfor Foreign Affairs. He is a person with a disabilityhimself and thus has devoted his life to disabilityrights activism, in addition to academic writing.Contact: Jukka Kumpuvuori, Verkatehtaankatu 4, ap.227, 20100 TURKU, E-Mail: jkumpuvu@gmail.com,Tel.: +358 50 552 0024.Hisayo Katsui, Institute for Human Rights, Åbo AkademiUniversity, Biskopsgatan 19, FI-20500 Åbo, Finland.14Behinderung und internationale Entwicklung 3/2012Disability and International Development

A RTIKEL/ARTICLEA Fair Share from the Development Pie : Disability in theEthiopian Poverty Reduction Strategy Papers ProcessDagnachew B. WakeneWhile a plethora of local and international development pundits have written, and continue to write, extensivelyon Ethiopia’s ongoing economic boom, little has been said about if and how this acclaimed development enterpriseaims to accommodate an often ostracised, cross-sectoral socio-economic theme, viz. disability. This article [1]provides an analytical glimpse at the extent of disability inclusion in the Ethiopian development agenda vis-à-visthe role and impact thereon of the country’s disability movement [2], with a particular emphasis on Poverty ReductionStrategy Papers (PRSPs). The paper offers disability stakeholders in Ethiopia, as well as those in other countrieswith similar socio-economic stature to that of Ethiopia, a timely evidence that would encourage further researchundertakings and inform relevant policy interventions.Background“Where, after all, do universal humanrights begin? In small places, close tohome - so close and so small that theycannot be seen on any maps of the world.Yet they are the world of the individualperson; the neighbourhood he lives in;the school or college he attends; the factory,farm, or office where he works. Suchare the places where every man, woman,and child seeks equal justice, equal opportunity,equal dignity without discrimination.Unless these rights have meaningthere, they have little meaning anywhere.Without concerted citizen action to upholdthem close to home, we shall look in vainfor progress in the larger world”(Eleanor Roosevelt 1948: unpaged).The above quote is, I believe, a brief, yet profuselyillustrative, encapsulation of what it pragmaticallymeans to create an all-inclusive societyin which everyone can fully participate - thevery premise on which this article bases itself.The now Federal Democratic Republic ofEthiopia is a country of three thousand yearsold, located in East-Central Africa (commonlyknown as the Horn of Africa region). It coversan area of over 1,127,127 square kilometres,making it the ninth largest country in Africa(see Figure 1). According to the latest NationalPopulation and Housing Census carried out in2007 by the Ethiopian Central Statistical Agency(CSA), Ethiopia is currently the second mostpopulous nation in Africa with an estimated populationof over 80 million, just next to Nigeria.Poverty and inadequate socio-economic participationof persons with disabilities (PWDs)have, since time immemorial, been the distinctivefeatures of the disability sector and movementin Ethiopia (ENAELP 2004). Persons withdisabilities form part of every community andFigure 1: The Official Map of Ethiopiaoften represent the majority of the most disadvantagedand underprivileged sections ofsociety (Reed 2005). Studies have shown whatthey describe as the intrinsic linkage betweenpoverty and disability, whereby the former canbe considered as both the cause and consequenceof the latter (UNCSD 2008). These factualassertions become evident when we lookat the situation in Ethiopia - one of the leastdeveloped nations in the world where the bi-directionallink between disability and povertycan noticeably be observed.Disability in Ethiopia:A Bird’s Eye ViewNeedless to say, the definitions accorded to theterm disability in the Ethiopian context, as inother countries, have significantly changed overthe years in tandem with corresponding changesin international outlook and standards. TheBehinderung und internationale Entwicklung 3/2012Disability and International Development15

A RTIKEL/ARTICLEearliest officially documented definition was incorporatedin what was known as the RehabilitationAgency for the Disabled Order No.70/1971, declared during the imperial regime ofEmperor Haile Selassie I (1930-1974). This documentdefined PWDs as those “who, becauseof limitations of normal, physical or mentalhealth, are unable to earn their livelihood anddo not have anyone to support them; includingany persons [sic] who are unable to earn theirlivelihood because they are too young or tooold.” This individualised and medically-chargeddefinition had obviously dominated the generalunderstanding of disability in Ethiopia, as it didelsewhere, up until a new, contemporary discourseemerged by virtue of the United NationsConvention on the Rights of Persons with Disabilities(UNCRPD). Thus, a recently enacted proclamationdwelling on the employment conditionsof PWDs [3] has introduced a social-modeloriented, albeit employment-specific, definitionof disability as a cumulative effect of the interactionof one’s “physical, mental or sensory impairmentsin relation with social, economic andcultural discriminations” (Proclamation No.568/2008: Article 2(1), emphasis mine).The absence of up-to-date statistical evidenceon disability issues in Ethiopia makes itdifficult to state specific figures that demonstratethe vicious cycle of relationships between povertyand disability prevalent in the country.What may be considered as the latest, relativelycomprehensive, statistical data available is thenationwide disability-specific survey commissionedin the year 2002 by the Japan InternationalCooperation Agency (JICA), according towhich PWDs constitute 7.6 per cent of theEthiopian population (JICA 2002). Even this survey,however, was primarily based on an inadequatecensus input provided by the NationalPopulation and Housing Census conducted in1994, which barely carried a credible data ondisability. Some of the major factors that havecurtailed the availability of reliable disabilityspecificinformation in Ethiopia are, inter alia,unscientific definitions accorded to disabilityand PWDs; confusion or misconception of terminologies;and the unwillingness of families,due to cultural reasons, to disclose their memberswith disabilities (FENAPD 2010).Attempts to ensure the involvement of PWDsin socio-economic and political endeavours ofthe country have been paltry, if not inexistent,for decades. The current Ethiopian Constitution,promulgated in 1995, is said to be the first constitutionever to mention the word disability inone of its provisions: Article 41 of the Constitutionof the Federal Democratic Republic ofEthiopia (1995) reads: “… the State shall,within its available means, allocate resources toprovide rehabilitation and assistance to thephysically and mentally disabled” (FDRE Constitution1995: unpaged). Also, recognition accordedto disability matters by the government andother pertinent stakeholders in Ethiopia has indeedimproved over the past few years. Nonetheless,the continued apparent exclusion ofPWDs from socio-economic and political participation,coupled with entrenched anachronisticattitudes towards disability, are markedly constrainingthe disability sector and its contributionto development and poverty reduction effortsunderway in the country to date, as evidencedin the following sections of this article.Role and Involvement of Personswith Disabilities and DisabledPeople’s Organisations in theEthiopian Poverty ReductionStrategy Paper ProcessTwo rather contradictory realities emerged fromthe views expressed by participants [4] of thestudy on which this article is based. On the onehand, it was admitted that Ethiopia has beenundergoing a considerable process of developmentin the past decade or so, as also affirmedtime and again by international developmentcommentators. The 2011 Human DevelopmentReport (HDR), for instance, stated that althoughEthiopia is still one of the least developed countriesin the world its economic progress over thepast ten years makes it one of the top ten moversin Sub-Saharan Africa (UNDP 2010). Additionalliterature shows that most, if not all, ofthe ongoing Ethiopian development policies, includingthe country’s implementation of theUnited Nations Millennium Development Goals(MDGs), are underpinned by a pro-poor orientation(Porter 2009; ILO 2002). On the otherhand, however, it is equally evident that thesepro-poor policies have consistently precluded asegment of society that is known to constitute asubstantial portion of the poor – namely, PWDs.And this is the point at which the factual paradoxbecomes apparent: pro-poor policies of povertyeradication that do not take the poorest ofthe poor, including PWDs, properly into account.An analysis of some key features explainingthe status quo would be mandatory at thisjuncture.A Share from the Development PieEthiopia was among the first subscribers to thePoverty Reduction Strategy Paper (PRSP) notion16Behinderung und internationale Entwicklung 3/2012Disability and International Development

A RTIKEL/ARTICLEsince the very onset of this poverty alleviationmodel in 1999/2000. As Figure 2 illustrates,the PRSP process dictates that it be essentiallypredicated upon broad-based consultations ofall layers of society, involving the poor themselvesas its integral part (ILO 2002). A substantivereading of all of the PRSP regimes so far formulatedand implemented by Ethiopia reveal thatdisability has hardly been considered as a matterof serious development concern. Three PRSPdocuments have been formulated by the Ethiopiangovernment between 2000-2011. Representativesof PWDs interviewed in this studyhave all provided firsthand accounts of the actuallevel of involvement by PWDs and their organisationsin the processes and subsequentadoptions of the three PRSP documents.Figure 2: Stages in the PRSP Formation ProcessAccording to these firsthand accounts, at thetime when the first PRSP, known as the SustainableDevelopment and Poverty ReductionPlan (SDPRP), was released in 2000/01, the situationwas such that the disability movementwas not adequately aware of the existence ofthe PRSP process, which was a fairly new conceptback then. Hence, PWDs and Disabled People’sOrganisations (DPOs) did not pursue theidea of partaking in that process, mainly becauseof their lack of awareness about PRSPs. Putotherwise those years were, as one of the participantsdescribed, “completely missed years”for the disability movement and its interests inthe SDPRP. A somewhat similar phenomenonwas recorded in other countries as well concerningthe incorporation of disability in theirrespective first PRSPs (ILO 2002; Dube 2005).When the second Ethiopian PRSP was introducedin 2005/06, a more vibrant and concertedeffort of disability stakeholders was observedwith a view to ensuring recognition of disabilityin the second document, named the Planof Action for Sustainable Development to EndPoverty (PASDEP). Due to lessons drawn fromtheir passive reaction to the first PRSP, DPOsand other disability-focused Civil Society Organisations(CSOs) and Non Governmental Organisations(NGOs) had vigorously attempted tohave their voices heard at various levels of thePASDEP formulation process. These efforts culminatedin the establishment of a Task Forcecomposed of most disability stakeholders andrelevant government departments in order tolobby the authorities involved in designing thePASDEP, primarily the Ministry of Finance andEconomic Development (MoFED) – the Office incharge of PRSPs in Ethiopia. In response to thesemoves, official promises were said to havebeen made by some key government ministersto the effect that the PASDEP would eventuallyincorporate disability matters. But, as it turnedout, promises were not kept and disability hadonce again remained invisible in the secondEthiopian PRSP, while similar documents developedin other African countries within this timeframe had incorporated disability, effectivelygrasping their lessons from the failures and experiencesof their first PRSPs (Dube 2005).This study posits that the main reasons underlyingthe successive exclusion of disability issuesfrom the first and second PRSPs of Ethiopiawere, inter alia:- Low level of awareness, both within the disabilitymovement and among pertinent governmentofficials, about disability inclusionin PRSPs;- Lack of coordination and strategic discourse,again both within the disability movementand among relevant government offices alike;- Capacity constraints (be they human and/orfinancial) permeating the country’s disabilitymovement;- Inaccessibility of most of the PRSP discussionvenues, hence indirect discrimination trends,which made it practically difficult for PWDs toengage in these fora, even in cases wherethey were invited to attend.A PRSP Discussion Paper produced in 2002by the International Labour Organisation (ILO)outlined some other factors generally leadingto the exclusion of disability from PRSPs, whichapply ipso facto to the Ethiopian situation aswell; the Discussion Paper says “it might be thatPWDs have not been able to formulate theirneeds and/or they were overruled by more powerfulor vocal stakeholders when it came tonegotiating a consensus. It might also be thatthey have not succeeded in convincing the governmentthat practical solutions for socio-economicintegration of PWDs are possible” (ILO2002: unpaged).When these factors are aggregated, they enunciatevoicelessness as a principal facet of thepoverty and exclusion of PWDs and the disabilitymovement as a whole.A recollection of pertinent provisions of theUNCRPD, which Ethiopia has ratified in July2010, appears befitting at this point. TheUNCRPD declares the “full and effective partici-Behinderung und internationale Entwicklung 3/2012Disability and International Development17

A RTIKEL/ARTICLEpation and inclusion of PWDs in society” as oneof its foundational principles (UNCRPD 2006).The Convention demands that State Partiesshould “closely consult and actively involvePWDs through their representative organisations”in designing and implementing the Conventionand in all other “decision-making processesconcerning issues relating to PWDs”(UNCRPD 2006: Art. 4(3)). One of the mainpieces of national policy that certainly is of concernto PWDs is the PRSP and decisions relatedthereto, including implementation of the MDGs,which are part and parcel of the tenets of povertyreduction. Thus, it follows, the full inclusionand effective participation of PWDs andDPOs in the preparation of these documents,from the very outset, is not only a fundamentalright of PWDs but the legal duty of the governmentexecuting these development strategies.In a rather striking development, the newestand third PRSP document of Ethiopia, called theGrowth and Transformation Plan (GTP), publicisedin 2010, has alluded to disability in a mannernever done before by its two predecessors ­a phenomena perceived by the disability movementas an encouraging move in the right direction,notwithstanding the delays seen in gettingto this stage.The GTP addresses disability and PWDs solelyas “welfare cases” conjoined with issues pertainingto the elderly (MoFED 2010). Admittedly,though, the points incorporated in thisdocument make clear attempts to adhere tocontemporary beliefs about disability as definedin the social and human-rights based models. Areview of the relevant paragraphs of the GTP isimportant to further elaborate where and howexactly disability is addressed therein.Section 8.3 (Social Welfare section) of theGTP sets the following as its “Strategic Direction”:“On the course of promoting the economicand social development of the country,the social welfare main emphasis liesin protecting rights and facilitating conditionswhich will enable persons with disabilityand older people to use their abilitiesas individuals or in association withothers to contribute to the development ofsociety as well as to be self-supporting inthe political, economic and social activitiesof the country […T]he programs thatare implemented for people with disabilities(PWDs) are programs that aim in preventingdisability by providing educationand training for PWDs and rehabilitatingthem to have equal access and opportunitiesas well as by providing informationabout disability and PWD, changing thesociety’s attitude towards disability andPWDs positively.” (MoFED 2010)It appears, therefore, that the GTP does envisagethe active participation and contributionof PWDs, and in stating its chief objectives, itsays: “the objective of the sector’s plan is […]making sure the involvement of all relevant stakeholdersin promoting social welfare servicesin an inclusive manner; identify social welfareproblems and take corrective measures, in viewof supporting the nation’s poverty eradicationendeavour to promote activities that will benefitpeople with disabilities and the elderly” (MoFED2010).As its mechanisms of implementation, theGTP outlines a list of strategies addressing afairly wide spectrum of matters, such as, the effectiveintegration and empowerment of PWDs,promotion of equal rights, accessibility andreasonable accommodation, as well as raisingpublic awareness about disability. The documentgoes on to state that it will endeavour toboost social welfare services and research regardingwelfare; although nothing has been explicitlysaid on the pressing need and promotionof disability-focused research.When seen in the light of what a sufficientlydisability-inclusive PRSP is supposed to contain,the following can be raised as shortcomings ofthe GTP:1. Lack of a cross-sectoral approach, which isbelieved to be the “most preferred mechanismof disability inclusion in PRSPs” (ILO2002: unpaged). We do not see disabilitymentioned in the sector-wide plans enumeratedand detailed by the document;2. Disability treated solely as a “welfare case”,as opposed to a multi-faceted socio-economiccondition;3. Specific differences between disability andissues of the elderly not satisfactorily delineated,should the two be placed together inthe first place.Government Bureaucracy and the Questfor Multi-Sectoral IntegrationIt was observed in this study that the Departmentof Rehabilitation at the Ministry of Labourand Social Affairs (MoLSA), which is the only officede jure in charge of disability affairs inEthiopia, has not been active enough in meetingthe increasing needs of PWDs. Participantsunderlined that a multi-sectoral integration ofdisability in the PRSP would provide sustainablesolutions to a range of matters. It ensures, firstand foremost, that PWDs would be able to meaningfullyavail themselves of each sector in ac-18Behinderung und internationale Entwicklung 3/2012Disability and International Development

A RTIKEL/ARTICLEcordance with their respective needs. Thus, forinstance, a DPO seeking the modification of acertain new road structure to fit to the needs ofPWDs would no longer have to go to MoLSAlooking for remedies; but instead to a pertinentdepartment specialising in disability affairs atthe Ethiopian Roads Authority. Such a practicewould also relieve MoLSA of the overwhelmingtechnical and budgetary pressure stemmingfrom being the only government office in chargeof a broad crosscutting theme such as disability,on top of several other social affairs (Wakene2006).Creating a disability-specific ministry can beanother helpful and complementary measure,said participants of the study. The essentialqualification required of such a ministry is to beknowledgeable about the different sector policiesand programs relevant to disability, so asto be able to firmly advocate for the interests ofits target group (PWDs) in negotiations with lineministries and the government as a whole.Hence, instead of being the specialist merely ofdisability matters, this ministry would have tobe what some authors refer to as the all-roundconnoisseur of a whole set of sectoral policiesand programs (ILO 2002). As such, it wouldhave both the competencies and necessary accessto the relevant information channels thatwould allow it to closely follow up on sector policies.It is, therefore, suggested that one of theinterventions of a PRSP document that adequatelyappreciates the crosscutting nature of disabilityshould be the redefinition of mandatesand the consolidation of competencies of office(s)in charge of disability; or, perhaps, thecreation of one.It is worth noting here that both the multisectoralnarrative as well as the creation of adisability-specific ministry entails their respectivelimitations in realistic terms. While the formercould run the risk of inadequate expertiseand specialisations in disability matters, the lattercould often be too specific to be sufficientlyreckoned with in macro-economic policy deliberationsand planning. Maintaining a balancesomewhere in between these ends is, therefore,of an inevitable importance. In what seemed tohave been a potential proclivity towards multisectionalism,a legislation promulgated in 2010by the Ethiopian government delineating thepowers and duties of ministries alludes that allgovernment ministries have the duties to “createconditions whereby persons with disabilitiesbenefit from equal opportunities and full participation.”[5] Whether this provision intends tointroduce a cross-sectoral approach strictosensuis still subject to interpretations.All in all, a disability-inclusive PRSP makessense only as a comprehensive and coherentwhole of different sectoral parts that incorporatedisability and their representative organisations.The interrelation and systematic aspect isindeed decisive: programs designed to ensureaccess to education for PWDs would remain futileif the provision of assistive devices andappliances, the accessibility of schools, publicand private facilities, and the employability ofPWDs are not simultaneously ensured in a coherentmanner. Each element depends on allthe others, and all of them are directly or indirectlyelements of the PRSP and its strategies(ILO 2002; Porter 2009). Introducing one or theother element into the PRSP is almost of no usewithout a comprehensive and coherent whole.It is of course true that in poor and developingeconomies like Ethiopia, it might be unavoidableto add one important dimension into themulti-sectoral ideology; that is, prioritisation.Given the various widespread socio-economicchallenges that Ethiopia faces, we should notexpect a scenario where the needs of PWDswould be met altogether. Be that as it may,though, the country’s PRSP is supposed to serveas a progressive realisation tool in both recognisingand prioritising the needs of PWDs inthe development agenda, with the ultimategoal of ensuring a full-fledged inclusion ofPWDs (Zeleke 2009).Imminent Challenges andOpportunitiesFinally, this study analysed extant challengesand opportunities facing the Ethiopian disabilitymovement and its role in the country’s developmentarena. Ongoing trends of promulgatingnew disability-related laws, and reforming existingones, were brought up by participants ofthe study as opportunities deserving recognition.Examples included accessibility provisions ofthe Building Code currently enacted at the Federallevel [6], the employment proclamationon the rights of persons with disabilities [7],and the development of a draft framework ofspecial needs education on Technical and VocationalEducation Training by the Ministry ofEducation (MoE), in collaboration with DPOs.Advancements seen in the education sector, inparticular, were underscored by participants asrole models that ought to be emulated by othersector-ministries in the country. The other progresshighlighted as breakthrough was thementioning of disability for the first time in thelatest and third PRSP document of Ethiopia –the GTP. Participants said that, even thoughBehinderung und internationale Entwicklung 3/2012Disability and International Development19

A RTIKEL/ARTICLEdisability was acknowledged in the GTP only asa matter of social welfare and far less thanwhat they had hoped for, this document shouldbe considered as a notable move in the rightdirection. In July 2010, the government ofEthiopia ratified the UNCRPD, which is alsoanother cornerstone development, participantsadded.In parallel with the foregoing opportunitiesin and for the disability movement, challengesfacing the movement have also been patentlypointed out by participants. Capacity restraints,insufficient coordination and discourse amongstdisability stakeholders were highlighted as majorchallenges. But, most importantly, in a measurethat created some real concerns about thevery survival and functioning of DPOs in Ethiopia,the government has recently passed a legislationthat virtually impels a fundamental reformationof all non-governmental organisationsand civil society initiatives operating in thecountry. This law, called the Ethiopian Charitiesand Societies Proclamation No. 621/2009,declares that if a civil society organisation optsto work on issues akin to rights advocacy, andthis obviously includes disability advocacy, itshould generate 90 per cent of its budgetarydemands only locally, and not from an internationalfunding of any sort. The law goes on tosay that organisations which would prefer procuringmore than ten per cent of their budgetsfrom foreign sources can only work as what itdubs as Resident Charities or Societies focusingmerely on relief and development activities withoutany involvement in acts of advocacy (Proclamation621/2009).Knowing that most, if not all, DPOs in Ethiopiahave been operating by virtue of various internationalworking collaborations and thefinancial supports emanating thereof, the aforementionednew legal restrictions would withouta doubt curtail their overall work on advocatingfor the rights of PWDs in Ethiopia. Inthe course of this study, I discovered that thisimpact has already begun to be felt within theEthiopian disability movement in differentforms; a case in point being the split currentlyoccurring within the Federation of EthiopianNational Associations of Persons with Disabilities(FENAPD) – an umbrella organisation ofnational DPOs. As a direct consequence of thenew law, the Federation faced the challenge ofbeing divided into two, between its memberswanting to stick to their advocacy work, andthose considering their reformation as developmentNGOs since they cannot exist withoutsome external funding. FENAPD is now re-registeredas a Resident Charity deciding to becomemore of a relief and development entity thanone of advocacy; and its member associationsthat decided to follow this same path have continuedto remain within the Federation. Consequently,some of the bona fide founding membersof FENAPD that refused to abandon theirwork on advocacy for disability rights are leavingthe Federation, thereby notably reducingthe size and cogent influence of the latter.It goes without saying that advocating for therights of PWDs is considered to be an inherentingredient of the activities of DPOs in any givennation. In a country like Ethiopia, where therights, dignities and socio-economic participationof PWDs are still far from being well-recognised,there is no doubt that an increasinglylarger scale of disability advocacy is indispensable.The UNCRPD, to which Ethiopia is a party,also vehemently calls for an elevated momentumof advocacy for the rights of PWDs between,among and within the jurisdictions of eachState Party to the Convention. Thus, it can beconcluded, the said new legal restraint in Ethiopiashould be essentially revisited by the governmentin a manner that pre-empts the deteriorationof the country’s disability movement,which has only been burgeoning over the pastdecade or so.AcknowledgementsHeartiest thanks to all participants of the study,including the Federation of Ethiopian NationalAssociations of People with Disabilities (FEN­APD) and its members for extending their unreservedcooperation to this project. Specialthanks goes to Dr. Margaret Wazakili (StellenboschUniversity) who provided critical reviewsand supervision in the course of this study, andto the Centre for Rehabilitation Studies (StellenboschUniversity) within the auspices of whichthis study was undertaken. I would also like tothank Ms. Mahlet Fantahun for her outstandingediting contributions.Notes1 The article presented herein is based on the author’sgraduate research conducted between January to December,2011 (and updated in August, 2012) withinthe auspices of Stellenbosch University, South Africa.The full and original version of the research can beretrieved at www.scholar.sun.ac.za/bitstream/handle/10019.1/.../wakene_role_2011.pdf.2 The term movement is generally described as “the organisationor gathering of people around a certain issueor set of issues; or around a set of shared concernsand common interest” (Campbell and Oliver,1996). As such, for purposes of this article, a disability20Behinderung und internationale Entwicklung 3/2012Disability and International Development

A RTIKEL/ARTICLEmovement, can be said to encompass all organisations,individuals and/or groups, the primary agendaof whom pertains to promoting the rights of personswith disabilities.3 The Right to Employment of Persons with Disability ProclamationNo. 568/2008.4 Respondents were selected from various DPOs, relevantgovernment ministries, disability activists, disability-focusedand other pertinent local and internationalNon Governmental Organisations (NGOs), CommunityBased Organisations (CBOs), professional associationsand other Civil Society Organisations(CSOs).5 A Proclamation to Provide for the Definition of Powersand Duties of the Executive Organs of the FederalDemocratic Republic of Ethiopia (Proclamation No.691/2010, Article 10(5)).6 The Ethiopian Building Proclamation No. 624/2009.7 The Right to Employment of Persons with Disability ProclamationNo. 568/2008.ReferencesCONSTITUTION OF THE FEDERAL DEMOCRATIC REPU­BLIC OF ETHIOPIA (1995): Article 41(5). Addis Ababa.DUBE, A.K. (2005): Executive Summary. Participation ofDisabled People in the PRSP/PEAP Process in Uganda.Disability Knowledge and ResearchJAPAN INTERNATIONAL COOPERATION AGENCY, JICA(2000): Ethiopia Country Profile on Disability. AddisAbabaPORTER, C. (2009): After 2015. Promoting Pro-Poor PolicyAfter the MDGs. Young Lives Think Piece. UnitedKingdomREED, B. (2005): Water and Sanitation for Disabled Peopleand other Vulnerable Group. Designing Servicesto Improve Accessibility. Waters, Engineering and DevelopmentCentre: Loughborough UniversityTHE ETHIOPIAN NATIONAL ASSOCIATION OF EX-LEPRO­SY PATIENTS, ENAELP (2004): Strategic Plan and Management2005-2009. ‘Socio-Economic Analyses’.Addis AbabaTHE FEDERATION OF ETHIOPIAN NATIONAL ASSOCIA­TIONS OF PERSONS WITH DISABILITIES, FENAPD(2010): Disability and the Situation of PWDs in Ethiopia.Addis AbabaTHE GROWTH AND TRANSFORMATION PLAN, GTP(2010): Section 8. Social Welfare. Federal Ministry ofFinance and Economic Development: Addis Ababa.THE INTERNATIONAL LABOR ORGANISATION, ILO(2002): Disability and Poverty Reduction Strategies.Discussion Paper. Geneva, SwitzerlandTHE UNITED NATIONS CONVENTION ON THE RIGHTSOF PERSONS WITH DISABILITIES, UNCRPD (2006):Article 4(3). United Nations Head Quarters: New YorkTHE UNITED NATIONS DEVELOPMENT PROGRAM, UNDP(2010): Launching of the 2010 Human DevelopmentReport. Addis AbabaUN COMMISSION FOR SOCIAL DEVELOPMENT (2008):Mainstreaming Disability in the Development Agenda,Follow-up to the World Summit for Social Developmentand the Twenty-Fourth Special session of theGeneral Assembly [Note by the Secretariat]. UnitedNations: New YorkUNDESA (2001): Expert Group Meeting (EGM) on Disability-SensitivePolicy and Program Monitoring and Evaluation.UNHQ: New YorkWAKENE, D. (2006): Employment Discriminations on theBasis of Disability. The Current Legal Regime in Ethiopiaand Its Implementation. Faculty of Law, AddisAbaba UniversityZELEKE, S. (2009): Disability and Development. The Needto Develop Disability-Inclusive PASDEP in Ethiopia.Addis Ababa UniversityZusammenfassung: Während eine Fülle von nationalenund internationalen Experten umfangreich über Äthiopiensanhaltenden ökonomischen Boom geschrieben hat und immernoch schreibt, ist wenig darüber gesagt worden, obund wie diese Entwicklung ein oftmals ausgeschlossenes,sektorübergreifendes sozio-ökonomisches Thema, nämlichder Behinderung, berücksichtigt. Dieser Artikel [1] vermittelteinen analytischen Einblick auf das Maß der Inklusion behinderterMenschen in der äthiopischen Entwicklungsagendaim Vergleich zur ihrer Rolle und deren Auswirkungen aufdie nationale Behindertenbewegung [2], mit dem Schwerpunktauf den Strategiepapieren zur Armutsbekämpfung(PRSPs). Dieser Artikel bietet Interessensvertretern von Menschenmit Behinderung in Äthiopien, als auch denen in anderenLänder mit ähnlichen sozio-ökonomischen Gegebenheiten,zeitgemäße Anhaltspunkte, die weitere Forschungsvorhabenfördern und relevante politische Interventionenprägen wollen.Résumé: Alors que d’innombrables experts du développementont écrit et continuent à écrire à satiété sur le booméconomique éthiopien, il n’a pratiquement pas été dit si etcomment cette très louée entreprise de développement entendprendre en compte un sujet socio-économique intersectorieltrop souvent ostracisé, en l’occurrence le Handicap.Cet article fournit un aperçu analytique sur l’ampleurde l’inclusion du handicap dans l’agenda de développementéthiopien, en particulier dans les stratégies de réductionde la pauvreté (PRSP), en regardant le rôle et l’impactdu mouvement des personnes handicapées. Cet article apporteaux acteurs du handicap en Ethiopie ou dans les payscomparables des éléments opportuns pour encourager àentreprendre des recherches futures et informer les politiquesactuelles.Behinderung und internationale Entwicklung 3/2012Disability and International Development21

A RTIKEL/ARTICLEResumen: Mientras una variedad de desarrolladores localese internacionales escriben extensamente sobre el boomeconómico de Etiopía, el tema de la discapacidad no tienelugar aqui. Este artículo ofrece una mirada analítica al desarrollode la inclusión de las personas con discapacidad, suintegración en la agenda de desarrollo de Etiopía así comoel papel y el impacto del movimiento de la discapacidad enel país. Una enfoque especial de atención reciben las estrategiasde reducción de la pobreza. Los resultados del estudioindican la necesidad de intervenciones políticas y proporcionansugerencias para futuras investigaciones.Author: Dagnachew B. Wakene, 29, is an Ethiopianresearcher with disability specialising in inclusive developmentand legal studies. He received his LL.B degreefrom Addis Ababa University, Ethiopia, and anM.Phil in Disability, Development & Rehabilitation Studiesfrom Stellenbosch University, South Africa. Mr.Wakene is currently working as a Research Associateat the World Enabled/Pineda Foundation for Youth, aUS-based non-profit organisation focused on disabilityand human rights research and education initiatives.Contact: dagnacheww@yahoo.com; ordag@pinedafoundation.org.22Behinderung und internationale Entwicklung 3/2012Disability and International Development

A RTIKEL/ARTICLEDisabled People’s Organisations in India:Empirical Realities from the GrassrootsNandini GhoshOver the past few years in India, alliances of persons with disabilities, termed as Disabled People’s Organisations(DPOs) are being forged at the local levels in order to initiate localised disability advocacy struggles, in order tobring about a perceptible change in the status of disabled people. This paper explores the formation and genesisof such DPOs in different parts of India and the processes whereby these groups have engaged with the goalsthey were set up for. The paper attempts to assess the extent to which these groups have been able to achieve amovement for change of social attitudes at the grassroots level and the resultant effect it has on their identities.IntroductionIn India the emergence of a disability rightsmovement has practically started post the 1995landmark legislation that for the first time ensuredsome basic rights for disabled people. Thepolitics of disability in India has followed a differenttrajectory in India, as the national levelleadership of disabled people was unable to reachout to the people living at grassroots level.The void was filled up by Non-Government Organisations(NGOs) who took up the task ofdeveloping collectives of persons with disabilitiesat local level, who would then be able torally against the oppression faced by them on adaily basis at the local level. The vision of theaction taken up was to gather people with differentimpairments together, to help them toidentify themselves as a disabled person and tounderstand the ways in which experienceoppression as a consequence.Disabled People’s Organisations (DPOs) areusually collectives of disabled people operatingat the grassroots level, who have come togetherfor the specific purpose of combating themarginalisation they face in everyday life dueto the social structures and systems within theirown communities. Most of the DPOs in Indiaare cross disability groups as it is difficult to findmany members of one single disability in thesame neighbourhood, locality or village. Thesepeople largely are affected by one or more ofthe ten impairments that have been listed inthe two main laws for persons with disabilitiesin India. DPOs have a minimum membership offive disabled people but can go up to even 20members – for federations of DPOs the numbersare higher and large Federation in theSouth have up to 1,000 members. Office bearersof the DPOs are usually selected fromamongst the members, although in Federationsthere are elections held for each post. Most ofthese DPOs have codes of conduct and normsof functioning usually penned in the register inwhich they maintain the records of their meetingsand other activities. Some of the DPOs areregistered with the government either as cooperativesocieties or self-help groups dependingon the terminology used or schemes fordifferent marginalised groups.This research study was undertaken with themajor objective of examining the localised disabilityadvocacy struggles in various parts of thecountry in order to gain a better and contextualisedunderstanding of the key issues, importantevents and strategies being used to carve out adisability rights movement, based on developmentof collective identity for all persons withdisability. The study sought to gain a deeperunderstanding of the processes through whichalliances of persons with disabilities are beingforged at the local levels – the ways in whichNGOs are promoting formation of disabled people’sorganisations at the grassroots level, thereasons why disabled people are forminggroups, and the ways in which they are organisingthemselves. Further the focus was on exploringthe processes by which the DPOs areidentifying key issues as concerns for their advocacy,the strategies used by these groups tonegotiate the major challenges they face interms of inclusion in the community in terms ofeducation, health and livelihood as well as inother domains of social life. The aim was alsoto gain a deeper understanding of the processesof identity formation and reinforcement ofcertain identity markers for persons with disabilitiesbrought about by the participation in thegroups and in the larger movement. Finally thestudy looked to assess the impact the efforts ofthese groups has had on the lives of personswith disabilities in terms of changes in structures,systems and processes, and to determinetheir role in stimulating the disability rights movementat the local, regional and nationallevel.Data was collected from 19 Disabled Pe-Behinderung und internationale Entwicklung 3/2012Disability and International Development23

A RTIKEL/ARTICLEople’s Organisations (DPOs) from the ruralareas of seven different states (Andhra Pradesh,Karnataka, Tamil Nadu, Orissa, West Bengal,Jharkhand, Nagaland) and one Union Territory(Pondicherry) in eastern, north-eastern andsouthern regions. The reason for selecting theDPOs from these three regions is to map the diversityof disabled people’s collectives in India:the first being historical as DPO development inSouth India started nearly two decades agowhile in the east and north east, the processhas been initiated fairly recently. The secondreason is cultural as South India has a strongmovement by under privileged groups rangingfrom caste to religious minorities, whereas theother two regions, although witnessing socialmovements, are fairly reactive. Finally the geographicaland development spread serve as indicatorsof civil society – in the south, mostly flatterrain and developed infrastructure poses acontrast against the east and north east wherepoor infrastructural development coupled witha harsh mountainous terrain pose larger challengesto the unifications of disabled people.However the selection of the DPOs was throughkey informant technique – through the networkof NGOs working in the different areas, thegroups were identified and then met in a faceto-faceinteraction during their group meetings.Data was collected mostly using qualitativetechniques of unstructured interviews and focusgroup discussions with the group members andgroup leaders.The member profiles of these DPOs revealsome predictable and some surprising trends.Almost in every group there are more men withdisabilities than women. This reflects the Censusof India 2001 figures of the total number ofdisabled men and disabled women in the country.Within the DPOs, as witnessed mostly inSouth India, the representation of women isless than that of men with the male – femaleratio being roughly 60:40 in the groups. Howeverwhile 80% of the men attend the meetingsregularly, only 40% of the women are able tocome to the meetings on a regular basis. Thisdisproportionate representation of women inthe DPOs has significant consequences with regardto raising and acting upon gender issueswithin the collectives. This means that issuesthat are concerned specifically with gender areoften overlooked, as the disability oppression isthe primary focus with little thought to other interconnectingidentities that might lead to theoppression being aggravated. Because of thenature of their impairments and the voice thatthey have, most of the DPOs are dominated bypersons with mild to moderate physical and visualimpairments. The severely disabled people,persons with sensory impairments andmental challenges, remain marginalised withinthe group even though the groups purport torepresent all categories of persons with disabilities.Overtly the group includes as members,people with all disabilities but actually participationand leadership is seen only among thepersons with locomotor and visual impairments.Mentally retarded members hardly attend themeetings and are represented by their caregivers.There is very minimal presence of personswith mental health issues and their caregiversin most of the groups, except in some pocketsin the south where NGO driven programmeshave ensured inclusion of persons with mentalillness in the groups.Nature and Functioning of theGrassroots Level DPOsThe task of uniting persons with disabilities andforging a common identity based on experienceof impairment and discrimination in India hasbeen taken up by grassroots level NGOs. Thestaff of the mentoring NGOs mention the majorbarriers they face while trying to organisedisabled people into collectives. Their physicaland social isolation enforced by combination oftheir impairments, the social and infrastructuralbarriers they encounter both inside and outsidetheir homes and the resultant low self-esteemmost of them have, influences the joining ofgroups by persons with disabilities. Lack of proximitybecomes a major factor in their comingtogether as a group, and poses a challenge formentoring NGOs in grouping them into functionalunits. “I thought how can I go? Who willtake me? Will anyone have time? What can wediscuss there? What can I contribute?” says Nishamani,woman leader of Pragati DPO Orissa.The study reveals that the impetus of forminggroups did not emerge from the peoplethemselves. Reddy from the DPO VivekanandViklang Samity in East Godavari district stated,“The NGO staff told us to form groups as itwould help us to fight collectively for our rights.They said that it would be easy to get our rightsif we worked together as a group.” Not all thedisabled people in the area join the groups/DPOs. One person from the Bharathiyar disabilitygroup in Koppampathi said that there are35 persons with disabilities in his village butonly 13 joined in the group, out of which twoattend only irregularly. In Keeranur, there are80 people with disabilities identified but thereare only 40 in the four DPOs working in thearea. Within the DPOs there have been debates24Behinderung und internationale Entwicklung 3/2012Disability and International Development

A RTIKEL/ARTICLEabout the inclusion of representatives of disabledpeople, in case of children and those withsevere disabilities who might not be able to representthemselves adequately. The barrier toinclusion also comes from within the groupsthemselves as people with disabilities are alsosocialised in the same cultural values as rest ofsociety.Concern for LivelihoodFor many of the village level disabled peoplewho become members of DPOs, the first andforemost concern is of financial security. Most ofthe disabled people are also living below thepoverty line and hence one of the reasons forjoining a DPO is to look for means of earning aliving, increase their income and to have somesavings. Members of the Deep Jyoti Viklang Samityin Icchak block of Jharkhand who came tothe meeting of the DPO federation all claimedthat they call their group a Self-Help Group(SHGs) [1] – “we do not think there is any differencebetween DPO and SHG. This languagehelps us to access grants from the state.” Hencefinancial stability has been one of the majormotivating factors for forming of DPOs. In TamilNadu, in 2004, when the state government decidedto provide a sum of Rs. 10,000 to allSHGs in the state, in Tiruvallur for the first timedisabled people came forward to form theirown SHGs in order to claim the revolving fund.Most of the work done by the DPOs and the Federationin Icchak and Hazaribagh blocks ofJharkhand has been to consolidate and engagepersons with disabilities in income generatingactivities. Moreover groups interested in livelihoodactivities either individually or even as agroup, feel that advocacy for inclusion andequal rights is better achieved once they cansecure their daily existence. Putting thrust onlyon advocacy over self-interest and financial securityensured that the group did not sustain forlong.Almost all the groups who participated in thestudy have the practice of saving money on amonthly basis, have bank accounts, and performsavings credit activities. Members take loansfor various reasons ranging from runningpetty shop, buying books, school uniforms andpaying fees for the children, medical expensesetc. These savings and credit activities have helpedthe members of DPOs to become self-dependentand earning members of the familyand community. Most of the disabled peoplehave actually been able to use the funds generatedby the savings activities to either initiatenew income generation activities or augmenttheir already existing family businesses, rangingfrom setting up petty shops, to rearing livestock,to hiring out essential commodities to localworkers. One group in East Khasi Hills district,Meghalaya, where most of the members arewomen, has taken up community kitchen, gardeningand farming. In Orissa working togetheras a group, disabled people have been able toresist pressure of market forces that compel ruralproducers to sell at rates much below themarket rate.As economic empowerment remains one ofthe main thrusts, the DPOs have undertaken alot of advocacy work on livelihood issues. Armedwith the Persons With Disabilities (PWD)Act stipulation that disabled people are entitledto 3% reservation in all poverty alleviationschemes, the DPOs have been clamouring forinclusion in the National Rural EmploymentGuarantee Schemes being implemented in ruralareas. These efforts have however met withlimited success, depending on the people incharge of the programme in different districts.In the South, successful advocacy has meantthat several states have passed exemplary legislationand framed inclusive rules to ensuredisabled people enjoy the right to work. Underthe National Rural Employment Guarantee Act[2] (NREGA) scheme in Andhra Pradesh, personswith disabilities are allocated work for 150days for person with disabilities. So, instead ofcharitable incentives like paying equal wage forless work or paying lesser wages, the strategyhas been to provide more work to benefit personswith disabilities and their families.Claiming RightsThe study reveals that for most of the disabledpeople who become members of DPOs, thegroup is a means to do something for disabledpeople. Vasantham Federation in Tiruvallur districtof Tamil Nadu was formed with an objectiveto provide equal status, justice and equalopportunities to all persons with disabilities.Most of the members of the groups/federationsspeak in terms of forming a group to realisetheir rights – the understanding of rights is variedand connected mainly to their basic needs.Members of the Vasantham Federation in TamilNadu stated, “Rights is what should be providedto us by the government – food, house andshelter.” The human rights jargon has percolateddown to the grassroots level without properunderstanding of what it entails in terms ofrights holders and duty bearers and their correspondingobligations. For most group members,their entire life has been characterised byBehinderung und internationale Entwicklung 3/2012Disability and International Development25

A RTIKEL/ARTICLEpoverty and thus, the term rights is interpretedas entitlements and schemes framed by eithercentral or state government for person withdisabilities.Disabled people who become members ofthe groups also come to analyse their situationand realise that disabled people who benefitfrom different schemes are those who are proximateto people in positions of power, whilesuch schemes remain unreachable for the vastmajority of people, who are poor and more inneed of such provisions. Budhadeb, a leaderfrom the Pragati DPO BCpur Orissa, stated,“We had nothing. We didn’t even know whatprovisions are there for disabled people in ourcountry. We did not know there were laws tohelp us. After we heard from the staff of theNGOs we decided to form a group to ensurethat we get the schemes meant for us.” Findingcomfort in a group or common identity helpsdisabled people to rally together to demand fortheir rights and entitlements. Karuppaiah fromKeelyur said, “For each individual it is very difficultto get the rights individually, but throughSanghas together they can make the change.”Disabled members of a Sangha in Themmavoor,Tamil Nadu said that they came together forunity and oneness. “If a group of persons togetherask for any scheme/ benefits then there isa possibility of getting it.” However the schemesthat they talk about are mainly the social securityschemes like scholarships and pensions,which do not instil empowerment or independencebut rather create a sense of dependencyamong the disabled people. Most of the workhas focused on entitlements for persons withdisabilities available through various governmentschemes like pensions, scholarships andsome loans through government agencies.Advocacy for RightsThe issues chosen for advocacy varying fromgroup to group depending on their concernsbut vary regionally as well, although there issome similarity based on the different schemesto be found. The age and maturity of the DPOalso decides the range of advocacy activitiesthat are taken up by them. Comparing the missionand vision statements of the 19 DPOs, it isevident that these disabled people’s organisationsin India have been formed around the issuesof social and economic rights, with themajor focus being on the access to different governmententitlements ranging from scholarships,to mobility aids and appliances to loansand pensions as these are the easiest tolobby for and access. The relevance of the socialmodel and an increasing realisation aboutoppression has been translated into compensatoryactions by the governments, whose duty isseen as protection of rights of people with disabilities.As a member of Samakshya Orissa explained,“At the Gram Panchayat level, we triedto influence the Panchayat and worked on issueslike documents which have to be acquiredfrom the Panchayat like residence certificate,bus pass etc., job cards, getting work underNational Rural Employment Guarantee Scheme,entitlements like pensions. We have focussedmainly on disability certificate, aids andappliances, job cards, pensions etc. – helpingeach other in the group to get these benefits.”Some of the advocacy strategies used bythese groups include information sharing, awarenessraising discussions, petitions, rallies,blockades, etc. Groups in south India haveachieved a reasonable amount of success inengaging government systems and non-governmentalbodies to respond to their demands,especially with regard to access to entitlementsand financial processes, mainly writingpetitions, taking out rallies and staging dharnasto influence people in power in their favour. Inthe south, groups have advocated more aggressivelyon a range of issues, which has helpedmany of their disabled members. Membersof the NGO Pondicherry Multipurpose SocialService Society (PMSSS) in Cuddalore came toknow about the Tsunami Relief Fund and triedto mobilise this fund for persons with disabilitiesin the area, but were told that they wouldneed a National ID card to claim the fund. Thedisability ID card was seen as insufficient to accessthis relief fund. As a member of the DPOfacilitated by PMSSS said, “Ten members sat onthe road in protest and all were beaten by police.The Government doctor was called by policeand out of 250 people with disabilities, 50%got Tsunami Relief Fund. The government doctorsigned the national ID card and each personwith disabilities got Rs. 10,000/- throughTsunami Relief Fund.”Some of the DPOs, especially in South India,that have been operational for more than fiveyears have taken up community level activitieslike awareness programmes for the teachers invillage primary schools about inclusion ofdisabled children within the classroom. ThalumbuDifferently Abled Group was formed withthe objective of building unity among thegroup. Besides including disabled children inthe school, they help other non-disabled dropouts and motivate them to go to school. Sasikumarsaid that in his group Ismail, a disabledboy studying in 10 th was dismissed from school.26Behinderung und internationale Entwicklung 3/2012Disability and International Development

A RTIKEL/ARTICLEHe had low vision with 75% disability. Thegroup took this up as an issue and spoke withthe management and principal and enabled Ismailto write the public exam. Thalambu DifferentlyAbled Group Tamil Nadu has ensuredthat two of their members who are mentally illreceive free medicine from the government PrimaryHealth Centre and that regular follow-upis done. Groups in the south have been betterable to highlight and include issues of personswith mental illness in their agenda while thegroups in the northern region remain confinedto the issues of persons with visible disabilities.With regard to selection of issues for advocacywithin the groups, there is a clear trend ofdomination by certain groups of disabled people.Disability wise, the representation of issueswithin the DPO as well as actions taken upby them represents the core concerns of the dominantgroups; while the concerns of the othergroups of disabled people and some time thatof parents receive less importance. Representationof persons with hearing impairments is minimalas communication is difficult, while parentsof people with intellectual impairmentsare assigned a peripheral role within thegroups. The concerns of people with severedisabilities are side-lined because most of thesepeople do not attend the meetings and their representativesalso attend only occasionally. Inone of the groups in Tamil Nadu, when askedto reflect on what else could the group have takenup for addressing, one parent of a girl withmental retardation spoke aloud that probablythe group should start thinking of long term livingarrangements for people like his daughter– a statement that reflected that such needshad not been discussed before in the group.However, most of the other leaders of thegroup, especially the visually impaired and thelocomotor disabled, immediately spoke againstthe idea, adding that it was the task of the governmentto provide such care, and the DPOcould only petition the government to fulfil itsrole.Implications for MovementIn all social movements the process of involvementchanges the participants. They becomedifferent in terms of their self-awareness andidentity. What the efforts for advocacy and workingtogether as a group has done is given confidenceto the persons with disabilities, mostlyfrom poor rural households, to press for theirrights. Members from Annai Teresa DisabledDevelopment Trust elaborated, “People thoughtthat the persons with disabilities can do nothing,we thought of doing things for ourselves.And we have done many things.” The secretaryof Loving Self Reliance Group in Dimapur stated,“People with disabilities did not come outof their houses and felt ashamed to go out.Now they are coming out of the house. So theyare very happy. Most of the people felt that peoplestared at them or treated them differently.Now they have the confidence to go out andask for their rights.”Awareness about rights and their success inadvocacy efforts, however small, has impactedthe self-confidence of the members and developedtheir capacities to publicly deal with governmentofficials to assert their rights. This hasbeen particularly successful in the south wheremost of the groups have been working for thelast eight to ten years. “When we go to theBlock Development Office (BDO) [3], we ask thegovernment officials about the provisionsavailable for disabled people. If they say thatthere are no provisions we ask them to give inwriting. On the basis of such a document wecan fight further for our rights”, says Livingstonefrom the Vasantham Federation, TamilNadu. As the groups gain recognition from peoplein the government offices, the attitudes ofthese officers have changed. Nishamani, womanleader of Pragati DPO, Orissa added, “Ifwe went to the Panchayat [4] office, they woulddirect us to the block office, who would send usback to the Panchayat once again. They wouldharass us by making us go round and roundfrom one office to another. We never receivedcorrect information regarding how to access theschemes.” The Disabled People’s federationpromoted by PMSSS felt that the community’sattitude towards them had changed significantly.One member cited the fact that previouslywomen’s self-help groups used to declinedisabled women as members but are nowallowing women with disabilities into all theiractivities. Another was of the opinion that asthe federation has started working on differentissues that affect disabled people, other personswith disability too approached the federationif they had any problems. This has broughtrecognition and respect from other communitymembers.For some of the older groups, there is achance for stagnancy. DPOs like Vasantham Federationin Tamil Nadu and Pragati Federationin Orissa speak of a slowdown in their activitiesand in the enthusiasm of the members after thefirst spurt of activity and lobbying that resultedin most of the members claiming some entitlementor other. “We were all together when wewere mobilising for benefits like disability certi-Behinderung und internationale Entwicklung 3/2012Disability and International Development27

A RTIKEL/ARTICLEficate, scholarships and pensions etc. Oncemost of the members had received all the benefitsthey could receive, people’s interest inthe group went down.” When asked many ofthe members said, “Now I have a certificate Igot a BPL house [5] and I am getting a pension.These three were my demands and I have gotall of them, so why should I go to the groupnow?”Different DPOs react to this situation in differentways. The Annai Teresa Disabled DevelopmentTrust has been expanding its activities tonewer Gram Panchayats and forming freshgroups along with extending their own activitiesto more varied services like vocational trainingetc. Vasantham Federation has moved to lookingat mainstream policies and initiating advocacyto ensure disabled people are included inthese programmes, while extending supportservices to any new disabled people in the areawho approach them. Both these Federationsdream of becoming NGOs themselves, withstaff and funding to carry on their activities.One of the reasons for this is that the role modelthey follow is the NGO that mentored themand hence their aspiration is to be as structuredas them. Livingstone of Vasantham Federationwas clear about their objectives, “We will registeras an NGO and get funds for our activities.Our Executive Committee members should bepaid for the work they do and the time they devotefor this work.” On the other hand, PragatiFederation in Orissa was carefully steered bytheir NGO mentor towards looking not only atentitlements, but also towards solidarity, groupfeelings and cooperation. “We were asked todiscuss on how many issues like health, education,livelihood affect our lives including thoseof disabled people.”ConclusionThus, from the above discussion it is evidentthat the growth of Disabled Peoples’ Organisations(DPOs) in India is the consequence of exclusionand discriminatory practices towarddisabled people. Disabled people live isolatedlives in their own communities, with the barriersthey experience being not only attitudinal butalso structural and systemic. The physical andsocial exclusionary environments breed discriminationand exploitation. People with disabilitiesand their families are often apprehensive ofentering the social world for fear of ridicule,discriminatory and abusive behaviour and systemicrejection. The disability movement linksthe personal cultural realm to the political byraising issues that are often dismissed or ignored.Thus while the initial impetus was to encouragedisabled people “to solve their problemsthemselves and not have them solved forthem” there was also a further aim which was“to identify the needs of the membership as awhole and articulate them, both to statutoryagencies and political parties at both a localand a national level” (Oliver and Hasler 1987:116). Thus, disability politics in India has concentratedon changing government responses,changing relations at an interpersonal level andchanging identities at a personal level.It is quite evident from the DPOs that werepart of this study that DPO development in Indiahas been due to external stimulation of fundingagencies working through NGOs. DPOsare usually seen as social (human rights) movements,though this review of community-basedDPOs indicates that many of them are in factself-help groups (SHGs), trying to promoteusually some income generating activities fortheir members. Sometimes, SHGs may form federations,which can be observed in a numberof States in India. Such federations have astronger voice; they foster active citizenship andtogether or under a national umbrella organisationthey may be very successful in combatinginjustices in society. What could have been, asin the west, a source of personal support andencouragement has remained mired in self-interestand individual development.The second major reason for successfulDPOs is the location within a larger frameworkof people’s struggles. In the south where thedalit movement has been very strong, thegroups have found it easier to internalise andrally using an identity marker with which theyhad not identified previously as a group. InOrissa also, the association with the land rightsmovement and farmers’ struggles that have takenplace in the area has helped the disabledpeople’s organisations to benefit from their experienceand strategies in successfully lobbyingfor their rights. People in the area have a preexposureto struggles and negotiations, whichpeople in many other areas do not have andthis predisposes them to take initiative on theirown. On the other hand, in the north-east,disabled people are so isolated within their owncommunities because of the hilly terrain thatthey have not been able to capitalise on the experiencesof the militants groups operating inthe regions, especially Nagaland.In India, the grassroots level DPOs have utiliseda wide variety of strategies for advocacy tolay claim to their political rights, but most ofthese have been peaceful and placatory towardsthe people in positions of power. Thus,28Behinderung und internationale Entwicklung 3/2012Disability and International Development

A RTIKEL/ARTICLEthe struggles around disability issues stimulatedby these DPOs have never taken a radical formbut remained at the periphery, mainly becausethe disabled members themselves doubt theirown revolutionary potential. These groups andtheir disabled members, though united on thebasis of identity, have not been able to developa group pride in identity as in the west and inthe case of other marginalised group movements.Moreover most of these DPOs still remainat the periphery of all social activitieswithin the community, despite being lookedupon as resource for persons with disabilities.DPOs themselves have rarely broadened theirvision to move towards mainstreaming or inclusivesocieties.Notes1 Self Help Groups at the grassroots level in India havebeen the hub of small-scale economic activities. Thereare different government and non-government schemesand programmes that provide training for incomegeneration to SHGs, start-up loans and marketingsupport.2 The scheme promises food for work for rural peopleduring lean or non-agricultural season. The work,provided for 100 days every year to every household,is mainly infrastructural development like laying ofroads, digging of ponds, clearing of jungles etc.Usually disabled people are excluded from this work.However advocacy by the DPOs has ensured thatdisabled people are included in the allotment of workand also led to policy changes in some states.3 A block is a district sub-division in India.4 Panchayats are local self-governments at the villageor small town level in India.5 Houses for Below Poverty Line families provided bythe government.ReferencesOLIVER, M./HASLER, F. (1987): Disability and Self-help: ACase Study of the Spinal Injuries Association. In Disability& Society, Vol. 2, Number 2, pp. 113-125.Zusammenfassung: Während der letzten Jahre habensich in Indien Bündnisse von Menschen mit Behinderungen,bezeichnet als Disabled People’s Organisations (DPOs), auflokalen Ebenen geformt, um ortsgebundene Bemühungenfür die Interessensvertretung behinderter Menschen zu initiieren,um eine spürbare Veränderung im Status behinderterMenschen zu bewirken. Dieser Artikel untersucht die Entwicklungund Entstehung solcher DPOs in verschiedenenTeilen Indiens und die Prozesse, wodurch diese Gruppensich für die Ziele einsetzen für die sie eingerichtet wurden.Der Artikel versucht, das Ausmaß einzuschätzen in dem esdiesen Gruppen möglich war, eine Bewegung für eine Veränderungsozialer Einstellungen an der Basis zu erreichenund die daraus resultierenden Effekte, die dies auf ihreIdentität hat, zu beleuchten.Résumé: Ces dernières années en Inde, des alliances depersonnes handicapés, appelées Organisations de PersonnesHandicapées (OPH) ont été créées au niveau local afind’initier des actions de plaidoyer localisées, dans le but defavoriser un changement perceptible du statut des personneshandicapées. Cet article scrute la formation et lagenèse de ces OPH en différents endroits de l’Inde et lesprocessus que ces groupes ont mis en marche pouratteindre les buts de leur création. Cet article tente d’évaluerà quel point ces organisations ont réussi à créer un mouvementpour le changement des attitudes sociales depuis labase et quel en est le résultat pour leur identité.Resumen: En los últimos años han sido creadas cada vezmás alianzas en India, formadas por personas con discapacidad,para iniciar actividades de la auto-representación enel ámbito local con el fin de mejorar significativamente suestatus social. Este artículo examina los orígenes y la génesisde tales organizaciones en diferentes partes de la Indiay los procesos con los cuales estos grupos persiguen susmetas. Se trata de valorizar si estos grupos han tenido éxitoen lograr un movimiento por el cambio en las actitudes socialesy si eso tuvo efecto positivo en relación a su identidad.Author: Dr. Nandini Ghosh is Assistant Professor atthe Institute of Development Studies Kolkata.Contact: Dr. Nandini Gosh, Assistant Professor, Instituteof Development Studies, DD 27/D Salt Lake SectorI, Kolkata 700064,E-Mail: nandinighosh@gmail.com.Behinderung und internationale Entwicklung 3/2012Disability and International Development29

B ERICHTE/REPORTSMental Health Remains an Invisible Problem in AfricaAs long as African states face the underlyingproblems of poverty and social stigma, theycannot address the issue of mental illness. Theway language is used to conceptualise mentalillness is essential to its understanding andtreatment. In Lesotho, there is no Sesotho (thelocal language) equivalent for the English termcounselling. Instead, a discussion among localhealth workers leads to a range of alternativeexpressions, from Hotastaisamothofihelaqeto (toguide someone to reach a conclusion), Hothusamothohohlokomela(to assist a person to realisehis problem, to solve it and accept it), andHotsehetsamotho (to support). A study in Uganda(Cross-Cultural Assessment of Trauma-RelatedMental Illness (Phase II), available at:www.certi.org/publications/policy/ugandafinahreport.htm) set out to assess levels of depressionin a community, only to realise the term depressionis not culturally appropriate. The termsYo‘kwekyawa - hating oneself - and Okwekubagiza- pitying oneself - are used instead.A lack of mental health policy, as well as socialstigma, has meant that in many parts ofAfrica mental illness is a hidden issue. Withoutdeveloping a language to discuss the problem,avenues to treatment and understanding of thephenomena in an African context remain seriouslyunder-addressed. In most African countries,mental health is seen as a peripheral andisolated issue. With other immediate physicalhealth pressures, such as improving infant mortalityand reducing AIDS rates, mental healthdoes not necessarily rank as a priority. However,this approach is deeply misguided. 14% ofthe global burden of the disease is attributed tomental illness - which includes a broadspectrum of diagnoses, from common mentalillnesses such as anxiety and substance abuse,to severe illnesses like psychosis. Mental healthwell-being is closely associated to several MillenniumDevelopment Goals, with areas asbroad as education, maternal health, HIV andpoverty all entwined with the problems of mentalillness.Dr Stevan Hobfoll, Professor and Chairpersonat the Department of Behavioural Sciencesat Rush University told me that, “mental healthis a deeply stigmatised area in most if not all ofAfrica.” One study in Nigeria (Perception andBeliefs About Mental Illness Among Adults inKarfi Village, Northern Nigeria, available at:www.biomedcentral.com/1472-698X/4/3)showed that the participants’ primary responseto a person with a perceived mental illness wasfear, followed by avoidance and anger. Thissuggests a lack of education about the reality ofmental illness. More seriously than this, sufferersof mental illness are vulnerable to humanrights violations, to physical and emotionalabuse and from discrimination both from healthworkers and the wider community. According toVikram Patel, a Global Mental Health expertand Professor at the London School of Hygieneand Tropical Medicine, there is “no questionthat several forms of social disadvantage makepeople more vulnerable to a range of mentalhealth problems.” Mental ill-health and povertyexist in a “bi-directional relationship”, he said.Crick Lund, professor and researcher at the Departmentfor Psychiatry and Mental Health,agrees. He told Think Africa Press that povertyand mental health are “completely intertwined”,so people living in poverty are morevulnerable to mental illness, whilst those withpre-existing mental illnesses are more likely tobecome trapped in poverty due to decreasedcapacity in everyday functions.Post-conflict Sierra Leone has establishedchild-soldier rehabilitation projects, which providecounselling and support to children traumatisedby war, and the prevalence of genderbasedviolence in the Congo has resulted in theestablishment of listening houses where womencan talk through their experiences in a safe environment.However, Professor Patel suggeststhat though war, violence and insecurity lead toan increased risk of mental health problems,the strength of the community in which an individuallives is at least as important. Providingafflicted communities with practical as well aspsychological support can mitigate the effectsof instability. Traditional healers provide somesupport, with a range of treatments includingthe enactment of rituals, which try to maintainthe well-being of a whole community. However,their role in healthcare is controversial. Theirmethods differ from conventional western approachesbased on psychiatric science. This hasprovoked considerable debates about the culturalappropriateness of imposing western ideasabout mental illness on Africa, and provokedchallenges from western psychologists to themedical success and accountability of healers.Vikram Patel is positive about the cooperationbetween traditional and conventional healthworkers. He says that “traditional medicine alreadyexists alongside biomedical treatment,30Behinderung und internationale Entwicklung 3/2012Disability and International Development

B ERICHTE/REPORTSand complementary healers should be workingin a mutually respectful relationship with otherhealth workers as part of the health system,sharing a common goal for helping peopleaddress their mental health problems.” Dr Hobfalladds, “the West also have much to learnfrom Africa in terms of collective spirit and collectivesupport. Often we should be looking atthe most healthy communities and families inany culture and model care after them.”Importantly, the approaches of traditionalhealers hint at the differing conceptions ofmental health throughout Africa. This is in turnindicative of a cultural diversity, which requiresan equally diverse and sensitive response. Thestigmatisation of mental illness is difficult toaddress, but can only be changed through increasedawareness, greater prioritisation oftreatment and enhanced support and education.Alongside the complex nature of mental illnessesthemselves and their interaction with socialsituations, there is a need for "multi-sectoraldevelopment efforts", which means there isno quick-fix solution for the problem of mentalhealth treatment in Africa.Faced with the scale of the mental healthtreatment gap - most developing countries dedicateless than 2% of government health budgetsto mental health care - the provision ofservices needs major development. Accordingto a study by the Grand Challenges in GlobalMental Health initiative, the biggest barrier toglobal mental healthcare is the lack of an evidence-basedset of primary prevention interventionmethods.Starting to address the research gap is theUniversity of Cape Town’s recent Mental Healthand Policy Project (MHaPP), which ran from2005 to 2010. This aimed to “develop, integrateand evaluate mental health policy” in Uganda,South Africa, Zambia and Ghana. However,Crick Lund, Project Coordinator for MHaPP, explainsthat once policies are developed they willremain a “largely hypothetical concept” untilimportant “intervention research” is completedto discover how to translate them best intopractice.Without engaging governments and integratingmental health treatment into pre-existingPrimary Health Care, little change will occur. Inorder for integration to succeed, however, attitudestowards mental illness need to be transformed.Practices such as using communityhealth workers and peer-based support to treatless severe mental illnesses offer pragmatic solutionsto improving on the significant lack oftrained psychiatric specialists. A cross-culturalapproach, which takes into account the requirementsof individual communities, is essential. Itshould also incorporate both local practices andthe local languages used to express individualmental health needs. All this is only achievableif mental illness in Africa is promoted as a majorhealth and social priority. The absence ofthe issue of mental illness from the MillenniumDevelopment Goals, the lack of mental healthchampions in Africa and the lack of a consistentand coherent message about mental ill-healthhave ensured it has remained untreated.Slowly, the scale of the challenges posed bymental ill-health is being acknowledged. TheWorld Health Organisation (WHO) recentlypublished the Mental Health Gap Action Programme(mhGAP) Intervention Guide (availableat: http://whqlibdoc.who.int/publications/2010/9789241548069_eng.pdf) for improving treatment,whilst in South Africa the upcoming conferenceAfrican Footprint in Global MentalHealth 2011 points toward the beginning of apublic discussion. Yet this discussion needs tomove beyond health specialists and into Africangovernments, communities and the wider globalmedia, so that, hopefully, the mental healthtreatment gap can be filled. Or as the Sesothospeaking health workers would say, “Hotastaisamothofihelaqeto.”Information: http://thinkafricapress.com/health/mental-health-remains-invisibleproblem-africahttp://huff.to/S3tfi3.Anthea GordonBehinderung und internationale Entwicklung 3/2012Disability and International Development31

K URZMELDUNGEN/ANNOUNCEMENTSKurzmeldungen/AnnouncementsUnser Klima – unser LebenBegegnungen zwischen Kindern und Jugendlichen mit undohne Behinderung sowie der Blick über den eigenen Tellerrandhinaus - diese beiden Aspekte verbindet das KlimaprojektJugend inklusive - global engagiert! der OrganisationBehinderung und Entwicklungszusammenarbeit e.V.(bezev).Ziel des Projekts ist es, lokale Vorhaben zum ThemaKlima zu planen und durchzuführen, an welchen Kinderund Jugendliche mit und ohne Behinderung beteiligt sind.Im Rahmen dessen sucht bezev bundesweit Schulen undaußerschulische Bildungseinrichtungen, die Interesse haben,sich innerhalb ihrer Stadt zu vernetzen, um ein gemeinsamesKlimaprojekt im ersten Halbjahr 2013 zu entwickelnund umzusetzen.Zur Unterstützung dazu kann das von bezev erstellteinklusive Bildungsmaterial Unser Klima – unser Leben genutztwerden, welches aus einem Handbuch, einer CD­ROM sowie einer Materialkiste besteht und für Kinder undJugendliche von 10-16 Jahren einsetzbar ist. Es enthältvielfältige Sachinformationen über das globale Thema Klimasowie didaktisch-methodisch differenzierte Arbeitsmaterialien.Zudem gibt es Vorschläge für Klimaprojekte mitKindern und Jugendlichen mit und ohne Behinderung. BeiInteresse bietet bezev einen ersten Vernetzungs-Workshopsin Ihrer Stadt an und begleitet Sie gern bei der PlanungIhres Vorhabens.Information: www.bezev.de/globales-lernen/jugendinklusive-global-engagiert-klimaprojekt.html;MichaelaBöhme (globaleslernen@bezev.de, Tel: 0201-17 88 963).Equal Chances for Fijian with DisabilitiesIn Fiji for the first time, the Australian Agency for InternationalDevelopment (AusAID)’s Disability Reference Groupheld high-level consultations on Disability Inclusive Developmentin the Pacific from 1 st to 3 rd August 2012. As partof its comprehensive program which involved meetingwith national, regional and international stakeholdersworking to improve the lives of persons with disabilities,the Disability-Inclusive Development Reference Group(DRG) also initiated the first ever public forum in the Pacificon disability rights. AusAID collaborated with the Universityof the South Pacific (USP) to bring members of theReference Group together with leaders in disability and inclusiveeducation from the region, the majority of whomare persons with disabilities themselves. Over 100 participantsattended the forum including students, academics,Disabled Peoples’ Organisations and development partners.The inspiring panellists included members of theDRG and regional specialists working to enhance the livesof people with disabilities.In his opening address, USP Vice Chancellor, ProfessorRajesh Chandra acknowledged the university’s importantrole in ensuring accessible tertiary education. He madeparticular mention of USP’s Disability Inclusion Planwhich, when finalised, will include commitments to appointingacademic advisors for disability in each facultyand ensuring accessibility of facilities, the latter of which isa significant challenge for the Pacific. Speakers sharedpersonal stories about how they came to be working indisability-inclusive development. “Women and girls withdisabilities in Fiji are both brave and forgotten”, said NaomiNavoce, a Gender and Youth Program Officer from thePacific Disability Forum who offered examples from herown life to illustrate the challenges. DRG member SenatorBuntan in his concluding remarks on the panel noted that“positive thinking and a fighting spirit” got him where heis today as the only person with a disability in the Parliamentof Thailand.AusAID will continue to take advice from the referencegroup on how to progressively improve the accessibility toensure that people with disability benefit equally from Australia’sassistance.Information: http://globalaccessibilitynews.com/2012/08/06/equal-chances-for-fijian-with-disabilities/.Disability Teaching for School System in FijiThe teaching of children living with disabilities will soonbecome part of Fiji's education system. Sixty-seven teachersfrom around the country are attending a three-dayworkshop in August at Suva's Holiday Inn to familiarisethemselves with a pilot project to introduce disability inclusiveeducation in primary schools. The project, an initiativeof the Education Ministry and the Australian government,aims to increase access to education for children withdisabilities in Fiji and increase retention and completionrates and learning outcomes.32Behinderung und internationale Entwicklung 3/2012Disability and International Development

K URZMELDUNGEN/ANNOUNCEMENTSSpeaking at the launch of the project, AusAID counsellorSarah Goulding said the access to quality educationprogram (AQEP), disability inclusion strategy seeks to increasethe options for education of children with disabilities.The project will be piloted at South Taveuni PrimarySchool in the North, Tavua District School in the West, AdiMaopa Primary School in the Eastern Division, Ratu LatianaraPrimary School in the Central Division and the AryaSamaj Primary School in Suva.Information: www.fijitimes.com/story.aspx?id=209836.Disability Still Seen as Bar to Motherhoodin KazakhstanEnduring prejudices limit access to family planning and reproductivehealth services. Disabled women in Kazakhstanface many obstacles in fighting for their rights, not leastwhen it comes to accessing reproductive health services inthe state sector. Alima Beysenbaeva is deputy chair of theShyrak Association of Disabled Women, and was confinedto a wheelchair following a car crash more than 20 yearsago. Now 42, she can talk from personal experienceabout the difficulty of simply seeing a doctor for a checkup.“When I went to see a gynaecologist, she looked atme with near-bewilderment, as if to ask why I’d come tosee her,” she recalled. “It was so humiliating.” Beysenbaevasaid some doctors believe that disabled women shouldnot have children.The Shyrak group commissioned a report last year thatfocused specifically on disabled women in Almaty, Kazakhstan’sbiggest city. Of the 300 women interviewed, sixout of ten said their rights had been harmed in some wayby hospitals and clinics. This included disrespectful anddownright rude treatment by medical staff. Some reportedthat when they became pregnant, they were refused permissionto register with maternity services and were referredfor abortions instead.A 2010 survey by Kazakhstan’s Public Opinion ResearchCentre found that most of the 1,500 visually impairedand hard of hearing people it canvassed had limitedaccess to information on reproductive and sexual health.Those seeking to have children were unaware of optionsthat might be open to them, while the lack of family planninginformation led to a high incidence of abortion. SaidaAbdrahmanova, a doctor at the municipal health centrein Almaty, acknowledged that some of her colleaguesheld negative attitudes towards persons with disabilities.Particularly among the older generation who workedin the Soviet medical health system, there are some medicswho see no need to offer a good service, provide ahigh standard of care and respect patients’ rights, shesaid.Abdrahmanova insisted that rather than persuadingdisabled women not to bear children, the role of doctorswas to provide the right advice to inform their decisions.Kazakhstan has laws setting out the state’s obligations tosupport disabled people, including legislation on socialbenefits and home care provision. As Shyrak has pointedout, the current legislative framework is limited to ensuringthat the disabled get the basic essentials, but ignoresother needs that they share with everyone else. Shyrakhas organised training sessions for medical staff to improveaccess to reproductive and sexual health services fordisabled women. In June, it held the first in a series ofworkshops which focused on encouraging health and socialworkers to offer the right kinds of treatment to disabledwomen, and to use the correct terminology when speakingto them. Doctors like Abdrahmanova argue thatwith the best will in the world, some disabled women arenot up to having children. Viktoria Kuznetsova, 45, proveshow wrong such attitudes can be.A resident of Almalybak, a small town near Almaty,she has used a wheelchair since an operation to remove atumour on her spine that she attributes to years of volleyballtraining. Her doctor supported her decision to have achild; and she gave birth by caesarean section. Things gotharder when her husband died before the baby was born.“No one helped me so I looked after the baby virtuallyon my own,” she recalled, adding that her mother, whodoes not live nearby, would visit just to take the child outfor some fresh air.When her daughter Sofia was 18 months old, a rampwas fitted to allow Kuznetsova to take her daughter outsideon her own. Before that, she said, “it was physicallyimpossible for me to get downstairs and go outside”.Sofia is now eight. Alongside coping with single parenthood,Kuznetsova has won Kazakhstan’s disabledtable tennis championship several times, and recently tookup archery.Information: http://iwpr.net/report-news/kazakstan-disability-still-seen-bar-motherhood.WHO Launches Wheelchair Service TrainingPackageThe wheelchair is one of the most commonly used assistivedevices. It is estimated that 70 million people requirewheelchairs worldwide, yet only 5% to 15% of peoplehave access. In partnership with USAID, WHO releasedthe “Wheelchair Service Training Package: Basic Level”whose main purpose is to develop the minimum skills andknowledge required by personnel involved in wheelchairservice delivery.Information: www.who.int/disabilities/media/news/2012/30_06/en/index.html.Behinderung und internationale Entwicklung 3/2012Disability and International Development33

K URZMELDUNGEN/ANNOUNCEMENTSAdults and Children with Disabilities atMuch Higher Risk of ViolenceBoth children and adults with disabilities are at much higherrisk of violence than their non-disabled peers, accordingto two systematic reviews recently published in theLancet. The reviews were carried out by Liverpool JohnMoores University’s Centre for Public Health, a WHO CollaboratingCentre for Violence Prevention, and WHO’sDepartment of Violence and Injury Prevention and Disability.These are the first studies to confirm the magnitude ofthe problem and they provide the strongest available evidenceon violence against children and adults with disabilities.They also highlight the lack of data on this topicfrom low- and middle-income countries. The review onthe prevalence and risk of violence against children withdisabilities, published in July 2012, found that overallchildren with disabilities are almost four times more likelyto experience violence than non-disabled children. The reviewindicated that children with disabilities are 3.7 timesmore likely than non-disabled children to be victims ofany sort of violence, 3.6 times more likely to be victims ofphysical violence, and 2.9 times more likely to be victimsof sexual violence. Children with mental or intellectual impairmentsappear to be among the most vulnerable, with4.6 times the risk of sexual violence than their non-disabledpeers (Prevalence and Risk of Violence Against Childrenwith Disabilities: A Systematic Review and Meta-Analysisof Observational Studies, available at: http://press.thelancet.com/childrendisabilities.pdf).The systematic review on violence against adults withdisabilities, published in February 2012, found that overallthey are 1.5 times more likely to be a victim of violencethan those without a disability, while those with mentalhealth conditions are at nearly four times the risk of experiencingviolence (Prevalence and Risk of Violence AgainstAdults with Disabilities: A Systematic Review and Meta-Analysis of Observational Studies, available at:www.who.int/disabilities/publications/violence_children_lancet.pdf).“The results of these reviews prove that people withdisabilities are disproportionately vulnerable to violence,and their needs have been neglected for far too long,”notes Dr Etienne Krug, Director of WHO’s Department ofViolence and Injury Prevention and Disability. “We knowthat specific strategies exist to prevent violence and mitigateits consequences. We now need to determine if thesealso work for children and adults with disabilities. Anagenda needs to be set for action”.Factors which place people with disabilities at higherrisk of violence include stigma, discrimination, andignorance about disability, as well as a lack of social supportfor those who care for them. Placement of peoplewith disabilities in institutions also increases their vulnerabilityto violence. In these settings and elsewhere, peoplewith communication impairments are hampered in theirability to disclose abusive experiences."The impact of a child's disability on their quality of lifeis very much dependent on the way other individuals treatthem,” stresses Dr Mark Bellis, Director of the Centre forPublic Health at Liverpool John Moores University, a WHOCollaborating Centre for Violence Prevention, and leadresearcher on the review. “This research establishes thatthe risk of violence to children with disabilities is routinelythree to four times higher than that to non-disabled children.It is the duty of government and civil society to ensurethat such victimization is exposed and prevented."Proven and promising programmes to prevent violenceagainst non-disabled children and adults – reviewed inWHO’s Violence prevention: the evidence, preventingchild maltreatment, and preventing intimate partner andsexual violence against women – should be implementedfor children and adults with disabilities, and their effectivenessevaluated as a matter of priority.The United Nations Convention on the Rights of Personswith Disabilities reinforces the need to protect therights of children and adults with disabilities and ensuretheir full and equal participation in society. This includesavoiding the adverse experiences resulting from violence,which are known to have a wide range of detrimentalconsequences for health and well-being. When preventionfails, care and support for children and adults who are victimsof violence are vital to their recovery. The WHO/World Bank World report on disability outlines what worksin improving health and social participation of people withdisabilities and promotes deinstitutionalisation.Information: http://who.int/disabilities/violence/en/index.html.Inaugural Forum on the Global Partnershipon Children with DisabilitiesOn September 14 th to 15 th , UNICEF hosted the first Forumon the Global Partnership on Children with Disabilities.240 participants representing more than 100 organisationsfrom across the world participated. They discussedhow the rights and needs of children with disabilitiesshould be prioritised in development efforts.The Forum included a high-level panel discussion onhow to realise equity and inclusion for children with disabilitiesin the post-2015 development agenda, as the targetdate for the Millennium Development Goals (MDGs) isfast approaching.During the Forum partners identified concrete strategiesto include disability on global agendas, in areas suchas education, nutrition, and humanitarian action. Partnersfrom seven countries (Azerbaijan, Bangladesh, Haiti, Malawi,Mozambique, Rwanda, Turkey) agreed on collaborationin the region covering Central and Eastern Europeand the Commonwealth of Independent States. Youth activistsalso made their voices heard. Abia Akram, the Coordinatorof the Global Network of Emerging Young WomenLeaders with Disabilities, spoke at the opening of theForum saying, “Girls and women with disabilities should34Behinderung und internationale Entwicklung 3/2012Disability and International Development

K URZMELDUNGEN/ANNOUNCEMENTSbe empowered to participate in decision making processesthat impact their lives. Their voices must be heard so theycan contribute to their community in the spirit of ‘nothingabout us without us’”.Ariel Ary Chinchilla, Special Olympics Athlete and InternationalGlobal Messenger, also spoke about the challengeschildren with intellectual disabilities face in theirdaily lives in schools and in their communities. “Twenty yearsago when I was born, doctors told my parents that mylife was not worth saving. These people never thought Iwould finish school, as I did, graduating from a regulartrilingual school. They never imagined I would be a fulltime staff member in a company like IBM.”The Forum allowed staff from country offices, regionaloffices and headquarters to learn more about: the rightsand situation of children with disabilities; how to apply aninclusive development approach across policies and programmes;and to network and meet key players workingin disability.This Forum was held in conjunction with the Fifth Conferenceof States Parties to the Convention on the Rightsof Persons with Disabilities.Information: www.unicef.org/policyanalysis/index_65906.html; www.who.int/disabilities/media/news/2012/15_09/en/index.html.It's About Ability! Youth Video ContestEach year, UNICEF publishes a report called State of theWorld’s Children. In 2013, the theme is on children withdisabilities. Children living with disabilities have the samerights as all children: the right to live in dignity and togrow up in an environment that allows them to reach theirfull potential. But too often, children with disabilities facedifficulties that hold them back.Filmmakers should take inspiration from the theme It’sAbout Ability! which takes a positive approach to disability.Too often, children with disabilities are shown neglected,weak or in need of pity. But those images only perpetuatenegative beliefs, which affect the way we behave. Instead,we are looking for perspectives that can be empowering,constructive and eye opening in their diversity. After all,children with disabilities are children first.Information: www.unicef.org/videoaudio/video_videocontest.html.Making It Work Launches New WebsiteMaking it Work is a methodology for documenting andpromoting good practices in line with the principles of theConvention on the Rights of Persons with Disabilities. Itaims to contribute to making this Convention a reality sothat it impacts on people with disabilities’ lives. On August28 th , the Making It Work International Coordination Teamannounced the launch of their new website including anonline searchable databasewith over 100 good practicecase studies on disability inclusion. The new website hasbeen redesigned with a fresh new look and user-friendlynavigation with a revised set of tools and the latest informationabout our work including:General information about Making It Work; Specific informationabout completed projects that have used the MakingIt Work methodology from all around the world;A revised set of tools and guidance on how to use Makingit Work; A good practice database where you can searchfor and download case studies from the reports; A directlink to resources on disability issues.Information: www.makingitwork-crpd.org/;www.makingitwork-crpd.org/good-practice-database/.New Enable Map of RatificationsThe Map of Ratifications and Signatures, a much visitedresource on the United Nations Enable website since2007, has now been officially prepared and updated bythe UN Cartographic Section. The map is colour coded toshow ratifications and signatures of the Convention andits Optional Protocol. The detailed accessible list of ratificationsand signatures is also available on the Enablewebsite. As the Map is copyrighted by the United Nations,permission to use the Map in any publication should bemade through the UN Cartographic Section.Information: www.un.org/Depts/Cartographic/english/about.htm; www.un.org/disabilities/documents/maps/enablemap.jpg; www.un.org/disabilities/countries.asp?navid=12&pid=166.Behinderung und internationale Entwicklung 3/2012Disability and International Development35

L ITERATUR /REVIEWSLiteratur/ReviewsUS International Council on DisabilitiesGlobal Disability Rights Library (GDRL)Those working to promote the human rights of peoplewith disabilities now have a new way to access informationand digital resources - even if they are beyond the reachof the Internet.The US International Council on Disabilities has helped todevelop the Global Disability Rights Library (GDRL), abroad collection of critical resources for disabled people’sorganisations, women’s rights groups, government agencies,academic institutions and others that advocate fordisability rights.As well, for the bulk of persons with disabilities living inareas where the Internet is non-existent, unreliable, orsimply too expensive, there is a new offline option calledthe eGranary Digital Library.The eGranary Digital Library is a four terabyte hard drivethat contains 30 million electronic documents - over 2,000Web sites, documents, videos, images and other materials- including over 2.5 million documents that make up theGlobal Disability Rights Library (GDRL). Hooked up to asingle computer, the eGranary can be shared with thousandsof people over local area networks. It has an interfacethat emulates the look and functioning of the Web ­including built-in search tools - but it does not require anyInternet connectivity to operate.The Global Disability Rights Library (GDRL) project is a jointinitiative of the US International Council on Disabilitiesand the Wider Net Project at the University of Iowa.The GDRL project was initiated with the support of theAmerican people via the US Agency of International Development.It has already been deployed to over 140 locationsworldwide.Bezug: www.usicd.org/index.cfm/global-disability-rightslibrary;www.widernet.org/egranary/gdrl,www.eGranary.org, E-Mail: sales@egranary.org; http://gdrl.org.implications for donors and development practitioners. Itcaptures and shares the experience of select donors anddevelopment agencies that are beginning to integrate theprinciples of the CRPD into their work. It also providespractical actions donors can take that will improve the wayfunding is promoted and managed so it becomes increasinglyinclusive.Bezug: www.disabilityrightsfund.org/donor/donorguide.html; info@disabilityrightsfund.org.The International Telecommunications Union(ITU) and the Global Initiative for Inclusive ICTs(G3ict)Making Mobile Phones and Services Accessiblefor Persons with DisabilitiesThe International Telecommunications Union (ITU) and theGlobal Initiative for Inclusive Information and CommunicationTechnologies (G3ict) published their latest reportentitled: Making Mobile Phones and Services Accessiblefor Persons with Disabilities on 12 September. Despite theunprecedented rise in mobile phone subscriptions, seniorcitizens, people living with disabilities and the illiterate areoften marginalised from the mobile miracle because devicesare not equipped with the right accessibility features,or because the price of accessible mobile phones and servicesis prohibitive. Examples of pioneering solutions arehighlighted in the report, as well as the role of the privatesector and regulatory and policy measures to ensure thatthe accessibility needs of all people are met.Bezug: www.itu.int/ITU-D/sis/PwDs/Documents/Mobile_Report.pdf.Disability Rights Fund (DRF)Beyond Charity: A Donor’s Guide to Inclusion- Disability Funding in the Era of theUN Convention on the Rights of Personswith DisabilitiesOn the occasion of the fifth conference of States Parties tothe Convention on the Rights of Persons with Disabilities,the Disability Rights Fund (DRF) is promoting its guide, BeyondCharity: A Donor’s Guide to Inclusion - DisabilityFunding in the Era of the UN Convention on the Rights ofPersons with Disabilities. DRF – a groundbreaking collaborativeto support the human rights of persons with disabilitiesaround the world – commissioned the guide to encouragedonor learning about the rights of persons with disabilities.This informative guide introduces the Convention and itsG3ict2012 CRPD ICT Accessibility Progress ReportThe 2012 CRPD Progress Report includes the latest dataon 52 countries representing 77.4 per cent of the WorldPopulation. The report offers disability advocates, governments,civil society and international organisations aunique benchmarking tool that collects data on countrylaws, policies, and programs pertaining to accessible andassistive Information and Communication Technologies(ICTs) around the globe. All results are available cross-tabulatedby region, level of income per capita of HumanDevelopment Index to facilitate benchmarking by advocatesand policy makers.Bezug: http://bit.ly/SF3KFp; http://g3ict.org/download/p/fileId_936/productId_244.36Behinderung und internationale Entwicklung 3/2012Disability and International Development

L ITERATUR /REVIEWSWorking Group on Violence against Women withDisabilitiesForgotten Sisters - A Report on Violenceagainst Women with Disabilities: An Overviewof Its Nature, Scope, Causes and ConsequencesThis report, prepared by scholars and human rights advocateswho are members of the Working Group on Violenceagainst Women with Disabilities, focuses on the prevalenceand pervasiveness of violence against women andgirls with disabilities.Bezug: Stephanie Ortoleva, Women Enabled; Hope Lewis,Northeastern University - School of Law;Published: August 21, 2012; Northeastern UniversitySchool of Law Research Paper No. 104-2012;http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2133332; http://papers.ssrn.com/sol3/Delivery.cfm/SSRN_ID2133332_code605446.pdf?abstractid=2133332&mirid=1.Italian Association Amici di Raoul Follereau(AIFO)Impact of Community-Based Rehabilitation:Impact of Community-Based RehabilitationProgramme in Karnataka IndiaThe main goal of the research was to understand andmeasure the overall role and impact of Community-BasedRehabilitation (CBR) in improving the quality of life of personswith different types of impairments, as well as differentdemographic, social and economic backgrounds. Wetherefore investigated the effectiveness of CBR programmesin improving the control that persons with disabilitieshave over their daily lives, their participation in differentaspects of community life (i.e. combating stigma and prejudice)and their access to various services over the fivedomains of the CBR matrix (health, education, livelihood,social and empowerment).Bezug: Biggeri, Mario et al.; Bologna: 2012; www.aifo.it/english/proj/research/sparkcbr/attachments/MandyaCBR_phase01_research_light_version.pdfLeonard Cheshire Disability and Inclusive DevelopmentCentreIntergenerational Poverty and Disability:The Implications of Inheritance Policy andPractice on Persons with Disabilities in theDeveloping WorldIn this paper, we examine the existing data and discussthe implications of current inheritance policies and practicesthat affect the lives of persons with disabilities andtheir families, arguing that when persons with disabilitiesare routinely denied equal rights to inherit wealth or property,this denial has a profound impact on their ability toprovide for themselves and their families. The stigma, prejudiceand social isolation faced by persons with disabilitiesand the widespread lack of education, social supportnetworks, and the right to appeal injustices at the family,community or national level, further limits the ability ofpersons with disability to contest inequities encountered ininheritance policies and practices.Bezug: Groce, Nora Ellen; London, Jillian; Stein, MichaelAshley: London, Leonard Cheshire Disability and InclusiveDevelopment Centre, 2012; https://www.ucl.ac.uk/lc-ccr/centrepublications/workingpapers/WP17_Disability_and_Inheritance.pdf.Centre for Human Resource Development(CHRD)The Darkest Corners: Abuses of InvoluntaryPsychiatric Commitment in ChinaEvery year, hundreds of thousands of people are detainedagainst their will in China’s psychiatric hospitals becausethey have or are alleged to have mental disabilities. Theinvoluntary commitment and forced medical treatment ofsuch persons is a violation of the principles of the Conventionon the Rights of Persons with Disabilities.CHRD’s report, The Darkest Corners: Abuses of InvoluntaryPsychiatric Commitment in China, details the grim conditionsand human rights abuses faced by these individuals.Patients brought to the hospital are denied of theright to make decisions regarding their own fate, includingadmission, discharge and treatment. Forced medical treatment,violence and mistreatment occur frequently. Hospitalsrestrict or prevent patients from communicating withthe outside world, including with their family membersand legal counselBezug: http://deflect.chrdnet.com/wp-content/uploads/2012/08/CRPD_report_FINAL-edited2;http://deflect.chrdnet.com/wp-content/uploads/2012/08/Press-release-FINAL-082220121.pdf.Behinderung und internationale Entwicklung 3/2012Disability and International Development37

L ITERATUR /REVIEWSWorld Bank Social Protection and Labor Unit,Human Development Network (HDNSP)Disability and Poverty in Developing Countries:A Multidimensional StudyAbout 20 % of the world population lives with some formof disability according to World Health Report (WHO2011). Yet, little is known about the economic lives of personswith disabilities, especially in developing countries.The research study Disability and Poverty in DevelopingCountries - A Multidimensional Study aimed to shed somelight on this matter. The study uses, for the first time, internationallycomparable data to draw an economic profileof persons with disabilities in 15 developing countries. Inmost countries, disability is found to be significantly associatedwith higher multidimensional poverty as well as lowereducational attainment, lower employment rates, andhigher medical expenditures. Among persons with disabilities,persons aged 40 and above and persons with multipledisabilities were more likely to be multi-dimensionallypoor.Bezug: Mitra, S./Posarac, A./Vick, B. (2013): Disabilityand Poverty in Developing Countries - A MultidimensionalStudy. World Development, Volume 41, 1-18;www.sciencedirect.com/science/article/pii/S0305750X12001465;http://siteresources.worldbank.org/SOCIALPROTECTION/Resources/SP-Discussion-papers/Disability-DP/1109.pdf.Shaun GrechDisability and the Global South (DGS):New International JournalDisability and the Global South (DGS) is a new journalcommitted to publishing high quality work focused exclusivelyon all aspects of the disability experience in the globalSouth. It provides an interdisciplinary platform prioritisingmaterial that is critical, challenging, and engagingfrom a range of epistemological perspectives and disciplines.The journal encourages contributions from disabled activistsand theorists from the global South, providing a safespace to critique and challenge the Western centrism indominant disciplines and practices, and the imperialism inthe production of 'knowledge' and its dissemination.Bezug: www.dgsjournal.org; Spanish version:www.dgsjournal.org/espanol.Human Rights WatchLike a Death Sentence: Abuses againstPersons with Mental Disabilities in GhanaHuman Rights Watch has just released its report entitled:Like a Death Sentence: Abuses against Persons with MentalDisabilities in Ghana. The report notes that most personswith mental disabilities in Ghana have little access tomental health care or other support services. Those whoreceive treatment often do so without their consent, inovercrowded and abusive public psychiatric hospitals andprayer camps, which are spiritual healing centres run by achurch. The lack of proper community support systemsmakes it so that those living outside of psychiatric hospitalsor prayer camps cannot access medication, struggle tofind food and other necessities of life, and are subjectedto daily stigma and discrimination.Bezug: www.hrw.org/reports/2012/10/02/deathsentence.Christoffel Blindenmission (CBM)Inclusion Made Easy - A Quick ProgramGuide to Disability in DevelopmentInclusion Made Easy is designed for program staff in internationaldevelopment organisations. It is a brief, practicalguide on how to ensure programs are disability-inclusive.It offers basic inclusion principles, practical tips and casestudy examples. Part A focuses on disability-inclusive developmentprinciples and Part B on disability inclusionacross a range of development sectors.Bezug: www.cbm.org/Inclusion-Made-Easy-329091.php.Access Exchange InternationalNew Guide on Paratransit for Mobility-ImpairedPersons in Developing RegionsAccess Exchange International has prepared a new guideentitled: Paratransit for Mobility-Impaired Persons in DevelopingRegions: Starting Up and Scaling Up. The guidewill assist practitioners around the world, especially in developingcountries, to initiate or expand paratransit servicesthat include persons with disabilities and seniors. Thispractical guide is results-oriented and works to help mobility-impairedpersons to get to where they need to go.Bezug: www.globalride-sf.org/paratransit/Guide.pdf.Water Engineering and Development Centre andWaterAidEquity and Inclusion in Water, Sanitationand Hygiene (WASH)Water Engineering and Development Centre (WEDC) andWaterAid have developed practical training materials forWASH practitioners, to help them analyse and address theproblems faced by the most disadvantaged people in accessingWASH services.38Behinderung und internationale Entwicklung 3/2012Disability and International Development

L ITERATUR /REVIEWSExtensively field-tested by WaterAid and WEDC in Africaand Asia, the materials are participatory and interactive,and are ideal to facilitate practical collaboration and problemsolving between disabled people and technical serviceproviders. They can be used as stand-alone activities,or as part of a broader training programme. Althoughrooted in the social model of disability, the scope of theanalysis framework has been broadened to encompassexclusion of all kinds. This makes the materials useful inbuilding alliances with groups working on other issues,e.g. gender, HIV, ageing.Bezug: Hazel Jones, Assistant Programme Manager, Water,Engineering & Development Centre, John PickfordBuilding, Loughborough University, Leicestershire, LE113TU; https://wedc-knowledge.lboro.ac.uk/collections/equity-inclusion; https://wedc-knowledge.lboro.ac.uk/collections/equity-inclusion.Behinderung und internationale Entwicklung 3/2012Disability and International Development39

40Behinderung und internationale Entwicklung 3/2012Disability and International Development

VERANSTALTUNGEN/EVENTS27.04. - 28.04.2013 29th Pacific RIM International Forum on the Rights of Persons with Disabilities, Honolulu, Hawai.Information: www.pacrim.hawaii.edu; E-Mail: prinfo@hawaii.edu.03.09. - 04.09.2013 Closing the Gap – Capacity Building for and with People with Disabilities on the Relationshipbetween Disability and HIV, Durban, South Africa.Information: www.usicd.org/detail/event.cfm?event_id=246&id=92; ; Contact: FarzanaAlli:E-Mail: Allif@ukzn.ac.za; Tel.: 031 260 8944.16.10. - 18.10.2013 2nd International Conference of the World Federation of the Deaf, Sydney, Australia.Theme: Equality for Deaf People. Registration will be open from 1 January 2013.Information: www.wfdsydney2013.com; Contact: PO Box 1060, Parramatta NSW 2124; Tel.:(02) 8833 3600; E-Mail: info@deafsociety.com.18.04. - 19.04.2013 Fortbildungsseminar: Inklusion von Menschen mit Behinderung in Projekten der Entwicklungszusammenarbeit,BerlinInformation: Institut für inklusive Entwicklung, Wandastr. 9, 45136 Essen, Tel.: 0201/17 89123, Fax: 0201/17 89 026, E-Mail: inie-inid.org17.05.2013 Fortbildungsseminar: Wirkungsmessung von Inklusion und Teilhabe, KölnInformation: Institut für inklusive Entwicklung, Wandastr. 9, 45136 Essen, Tel.: 0201/17 89123, Fax: 0201/17 89 026, E-Mail: inie-inid.org15.06. - 16.06.2013 Zukunftsworkshop Zukunftsfähige Entwicklung inklusiv gestalten, DüsseldorfInformation: Behinderung und Entwicklungszusammenarbeit, Wandastr. 9,. 45136 Essen,Tel.: 0201/17 88 963, Fax: 0201/ 17 89 026, E-Mail: kampagnen@bezev.de28.06.2013 Fortbildungsseminar: Arbeit und Beschäftigung inklusiv gestalten, KölnInformation: Institut für inklusive Entwicklung, Wandastr. 9, 45136 Essen, Tel.: 0201/17 89123, Fax: 0201/17 89 026, E-Mail: inie-inid.org03.12.2013 Fortbildungsseminar: Menschenrechte, Behinderung und Entwicklungszusammenarbeit, BerlinInformation: Institut für inklusive Entwicklung, Wandastr. 9, 45136 Essen, Tel.: 0201/17 89123, Fax: 0201/17 89 026, E-Mail: inie-inid.orgBehinderung und internationale Entwicklung 3/2012 41Disability and International Development

42Behinderung und internationale Entwicklung 3/2012Disability and International Development

Schwerpunktthemen kommender Ausgaben der ZeitschriftFocal Topics of Upcoming Issues1/2013: Von CBR zu Community Based Inclusive Development/From CBR to Community Based InclusiveDevelopment (verantwortlich/responsible: Gabriele Weigt)2/2013: Inklusion von Menschen mit Behinderung in sozialen Sicherungssystemen/Inclusion of Personswith Disabilities in Systems of Social Protection (verantwortlich/responsible: Sabine Schäper)3/2013: Inklusion in der Entwicklungszusammenarbeit/Inclusion in Development Cooperation (Arbeitstitel)(verantwortlich/responsible: Gabriele Weigt)Interessierte Autorinnen und Autoren mögen sich für nähere Informationen und unseren Leitfaden für AutorInnenbitte an die oben genannten Verantwortlichen wenden. Darüber hinaus sind Vorschläge für weitereSchwerpunktthemen willkommen unter info@inie-inid.org.If you are interested in contributing, please contact the respective member of the editorial board mentionedabove for more information and our Guidelines for Submissions. Moreover, we welcome ideas and suggestionsfor future focal topics which you can submit to our editorship at info@inie-inid.org.Deadlines for the upcoming issues:1/2013 2/2013 3/2013Hauptbeiträge/Focal articles 15.03.2013 15.05.2013 15.08.2013Kurzbeiträge/Other contributions 15.03.2013 15.06.2013 15.09.2013Liebe Leserinnen und Leser,bitte informieren Sie uns unter info@inie-inid.org über eine Adressänderung bzw. wenn Sie die Zeitschriftnicht mehr beziehen möchten oder falls Ihnen die Zeitschrift nicht zugestellt worden ist.Dear Reader!Please notify any changes of address, if you wish to end your subscription or have not received the print editionto info@inie-inid.org.Behinderung und internationale Entwicklung 3/2012 43Disability and International Development

­­­­­­­Behinderung und internationale EntwicklungDisability and International DevelopmentDie Zeitschrift Behinderung und internationale Ent The journal Disability and International Developwicklung erscheint seit 1990 dreimal jährlich mit ment is published three times a year since 1990,Beiträgen sowohl in deutscher als auch englischer featuring contributions in both English and Ger-Sprache. Ihr Anspruch ist es, ein Medium für einen man. Its objective is the scholarly and practice-origrenzüberschreitendenInformationsaustausch zur ented discourse on disability in low-income coun­Thematik zu bieten sowie die fachliche Diskussion tries. The journal aims at providing a platform forzu pädagogischen, sozial- und entwicklungspoliti­ a cross-border dialogue and promoting the proschen sowie interkulturellen Fragen im Zusam­ fessional discussion of related development policy,menhang mit Behinderung in Entwicklungsländern pedagogical/educational, socio-political and interweiterzuentwickeln.Jede Ausgabe ist einem cultural questions. Each issue is dedicated to a foSchwerpunktthema gewidmet, das durch Einzel­ cal topic, complemented by single contributions onbeiträge und einen aktuellen Informationsteil er other subjects and up-to-date information.gänzt wird.Bezugsmöglichkeiten:Subscription:• Kostenfreier Versand der Ausgabe im pdf-For • Free pdf version via e-mailmat per E-Mail (für die Aufnahme in den Ver (info@inie-inid.org for subscription)teiler: info@inie-inid.org)• Print version at a rate of 18 EUR/year (3 issues)• Kostenpflichtiger Bezug der Printausgaben für within Germany and 27 EUR to other European18 EUR/Jahr (3 Ausgaben) innerhalb Deutsch­ countries (info@inie-inid.org for subscription)lands und 27 EUR im europäischen Ausland(info@inie-inid.org)Darüber hinaus kostenlos im Internet unter In addition, a free online version is available atwww.zbdw.dewww.zbdw.de.Institut für inklusive EntwicklungWandastr. 9, 45136 Essen, GermanyTel.: +49-(0)201/17 89 123, Fax: +49-(0)201/17 89 026E-Mail: info@inie-inid.orgInternet: www.inie-inid.org/Die Zeitschrift Behinderung und internationale Entwicklung wird unterstütztdurch/The journal Disability and International Development is supported by:Kindernothilfe Caritas International Christoffel-Blindenmission­Behinderung undMisereor Handicap International Entwicklungszusammenarbeit e.V.