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Understanding disability: look, then acton whether the problem isfocused on the person orsociety. Both approacheshave totally different rolesin how to deal with the problem.There are two distinctvariants of the individualmodel: the biomedical approachand the functionalapproach. In the same way,the social model can envelopan environmental approachand another moresociopolitical one, based onhuman rights. In both casesit is possible to envisage howit is planned to deal with theproblem, how it can be preventedand what is the levelof social responsibility (readopposite box).Neither approach does morethan partially elucidate thequestion.As far as defining the problemis concerned, the functionalmodel describes theperson with disability as adefective being restricted inhis ability to carry out hissocial roles. In the socialmodel, the person with disabilityis dependent onspecialists, institutions andpolicies. In the first case, theproblem lies at individuallevel and within the frameworkof the theory of personaltragedy. In the second,it rests on environmentalprogrammes in a social andpolitical context, within thetheoretical framework ofsocial oppression. The solutionshould be looked forin mutual aid, the breakingdown of barriers, control byusers rather than with thespecialists. The social role isno longer the role of patientbut of user-consumer. Skillsare no longer the domain ofexperts alone: they integratethe experience of the peopleconcerned. Unlike under thefunctional model, the anticipatedresult is no longer toacquire the widest possiblephysical or psychic independence,to reduce the disabilitieswith only employment orinstitutionalisation in view.Quite the opposite - thesocial model aims at livingindependence, with employmenta possibility as well asorganised assistance controlledby the user.The compromiseof the handicapcreation processThere are fairly radical differencesbetween the functionaland social models; thesocial model has profoundlyrenewed the way we thinkabout disability. The conceptof handicap creation processseeks to reconcile these twotrains of thought using aninteractive approach (readbox page 18). The handicapsituation is defined asrestricting an individual’slife habits ensuing from aninteraction between personal(impairment, disability) andenvironmental factors whichact either as facilitators orobstacles. By giving themfree rein, this model is a sortof compromise compatiblewith the perspectives ofpersonal and sociopoliticalchanges.TYPOLOGY OF THE DIFFERENT APPROACHES TO DISABILITYAND THEIR UNDERLYING INTERVENTION METHODS(FROM RIOUX - 1997)DISABILITY viewedas INDIVIDUAL PATHOLOGYBiomedical origin (biomedical approach)TreatmentRecovery through medicalor technological meansPreventionBiological or genetic interventionPrenatal detectionSocial responsibility Eliminate or cure the disabilityFunctional origin (functional approach)TreatmentFunctional rehabilitation servicesPreventionEarly diagnosis and treatmentSocial responsibility Improve and obtain comfortDevelopment of environmental services and factors(environmental approach)TreatmentAccessibility, adaptationIncreased individual controlover services and supportPreventionElimination of social, economicand physical barriersSocial responsibility Elimination of obstaclesto integrationSocial organisation and relationship of the individualto society (human rights approach)TreatmentReformulation of political,economic and social rulesPreventionAcknowledgement that disabilityis an inherent part of societySocial responsibility Reduce inequalities of rightsAccess to full citizenshipDISABILITY viewedas SOCIAL PATHOLOGYThe identity questionThe issue in the currentdebate - and Handicap International’scommitment - is toavoid all forms of reductionism,be it medical or social.Nor must the subject andthe identity dimension beignored when seeking globalcomprehension of disability.The place of judgementmade by the person on hisimpairments, his restrictedactivities and the role of theenvironment (in other wordsthe subjective assessment ofthe disability situation) is illconsideredtoday. Specific toeach individual according tohis background, judgementis based on perceived gapsbetween expectations andachievements. It thereforehas a significant impact onthe quality of life. For example,loss of hearing does nothave the same “value” fora music enthusiast as forsomeone keen on reading.Defining handicap as theinteraction between disabilitiesand the environmentdoes not satisfactorily incorporatethe individual’s backgroundand the temporalityof his health problems. Thus,an epileptic is in a handicap14

situation even outside attacks.Any cyclical illnesscan disturb a person’s lifeeven in the good times. Theimmediacy of a model findsit difficult to account for thisdynamic, which is why it isessential to introduce theidentity question into anyapproach to handicap.It is essential to refer tosocial representations of thehandicap, and the way inwhich people integrate them,when building an individualor collective identity of theperson with disability underan intercultural commitment.ConclusionWe can draw a certainnumber of lessons from allthis. Firstly, the partnershipbetween users and policiesis institutionalised. Lobbying3-by the disabled movementhas brought it out of theshadows and allowed it todefine the needs of peoplewith disability and the possibleanswers to them bydrawing on its expertise. In1993, moves by the UnitedNations resulted in the adoptionof “Rules on the Equalisationof Opportunities forPersons with Disabilities”and resolution 56/168 adoptedby the United NationsGeneral Assembly on 19 December2001 established aCommittee to draw upa “global and integratedinternational conventionto protect and promote therights and dignity of personswith disabilities” 5 . Inaddition, the integration ofpeople with disability bythe European Parliamentand the European Forumformalises their legitimacyand their right to participatein drafting recommendationsand resolutions. Secondly,the diffusion of the socialmodel has without doubtbrought essential learningvalues to understandingdisability. Nevertheless, caremust be taken not to fall intoanother rut of denying personalfactors by abandoningone form of reductionism foranother. Jean-François RavaudENVIRONMENTAL QUALITY MEASURE: PILOT SURVEY IN KOSOVOThe Kosovo question is nolonger at the forefront of thenews. Since the conflict andNATO (North Atlantic TreatyOrganisation) bombings in1999, this former province ofthe ex-Yugoslavia has beenunder the protection of theUnited Nations. The end ofthe hostilities brought abouta withdrawal of all State instrumentsof the old regime.Nearly all the public servicesstopped functioning. Afterthree years of reconstruction,a new local government isbeing set up, even if Kosovo’sofficial status has yetto be defined. In the area ofdisability, functional rehabilitationor physical and rehabilitationmedical servicesonly covered a very limitedpart of the estimated needsand no social security systemworthy of the name exists forthe moment.A wide rangeof servicesThanks to its actions in emergencyaid, mine clearance,establishing a school forphysiotherapists, technicalsupport in the equipmentcentre in Pristina (renovation,training, equipment, management),assisting a localassociation (identificationof people with disability,distribution of equipment,primary rehabilitation services),Handicap Internationalimplements a wide range ofservices. An official workinggroup has at last publisheda document outlining policytowards people with disability6 based on the UnitedNations Rules for equalisationof opportunities. For thetime being this very generalreference framework has notbeen validated by the newgovernment.Given the lack of all reliabledata on the situationof people with disability inKosovo, it was not possibleto present a set of backed-uparguments to define actionpriorities. Handicap Internationalsuggested a qualitativesurvey with the support ofpartners in the field 7 .The objectiveand the instrumentThe survey aimed to producequality information on theneeds of people with disabilityin Kosovo, which wouldthen serve to prepare recommendationsfor an integrationpolicy. The Belgian researchgroup, Gravir, and the HandicapInternational officerresponsible for the surveydecided to use the analysisinstrument “Measure of thequality of the environment”starting from the handicapcreation process (read boxpage 18), which has alreadyproven itself in Canada andBelgium. This investigationinstrument reveals the mainobstacles hampering the dailylife of people with disability,and also environmentalfactors likely to make iteasier to achieve their lifehabits.Field surveyThe data was collected bymeans of a survey of somefour hundred people withdisability chosen at randomthroughout Kosovo. At theend of the first pilot survey,which brought the instrumentin line with socioculturalreality in Kosovo,sixteen interviewers visitedthe people selected to obtaintheir opinion on environmentalfactors in the followingareas: social network,5G. Quinn and T. Degener, 2002.6Comprehensible Disability Policy Framework for Kosovo - Disability Task Force, 2001.7Oxfam, Finnish Government, Handikos and Gravir.15L’interactif no. 10 - December 2002

Understanding disability: look, then actattitude of their family circle,employment market, income,commercial services, legalservices, medical and socialservices, infrastructures, naturalenvironment, communityservices and the politicalsystem.There was tremendous contrastbetween the impressionscollected during thethree-week survey. In thisharsh country which is stillmarked by the effects ofwar, the environment is aIn Kosovo, despite poverty, family support isvery present. Just like this father,who has managed to installan inclined plane for his son’s wheelchair.© R. de Riedmatten / Handicap International© R. de Riedmatten / Handicap Internationalsignificant obstacle. Roadsare very precarious, someof them still looking like realquagmires - when they havenot become simply impassablein winter. Poverty sometimesleaps at the throat. Isolationin the relative comfort- and control - of the familycircle is unquestioned. As issupport.The analysisThe “Measure of the qualityof the environment” instrument’sstrength lies in its differentanalysis levels. Generaltrends can be picked out andused to skim rapidly throughthe results. This method alsohas the advantage of takingthe opinions of the peoplewith disability directly intoaccount and integrating theidentity dimension. On anotherlevel, detailed interpretationaccording to differentcriteria is possible, the mostsignificant probably beingvulnerability. This qualifyingterm applies to people in aprecarious economic situation.For example, this groupof people considers materialsupport by the family as anobstacle, whereas the majorityof people interviewedconsidered it a facilitator. Across-disciplinary analysis ofthis population confirms thatthe most vulnerable peoplefrequently do not benefitfrom the support networksestablished, as known andfeared by all professionalsworking in social action.Advice on actionThe conceptual diagramused for the analysis suggestsa priority selection linebetween micro- and macroenvironments(see diagrampage 17) via the followingdimensions.1. The person:all the human, material andinstitutional resources providingtherapeutic or rehabilitationaction for the person).Adjusting a patient’s prosthesesat Pristina hospital’s orthopaediccentre, a centre supportedby Handicap International.In Kosovo, access to rehabilitationservices was seenas an obstacle by 42% ofpeople interviewed. However,41% of people withhigher incomes gave afavourable opinion.2. Assistive technologies:all technical means for aperson to act on his environmentin spite of his impairment(wheelchair, walkingsticks, etc.). 56% of peoplegave a favourable opinionon the availability of assistivetechnologies. 63% ofso-called vulnerable peoplegave a negative opinion(obstacle).3. The human environment:the person with disability’sfamily circle. These peoplecan sometimes offer practicalor psychological support.One of the most strikingresults was linked to the attitude(80% positive replies)and support (68% positivereplies) of the family circle,both seen as significant facilitators.4. The physical environment:all equipment and ecologicalconditions forming the personwith disability’s environment(the home and its equipment,the public highway, climate,pollution, etc.). 56% viewedaccessibility to their place ofresidence as an obstacle.5. Education:education is one of thepillars of the socialisationprocess. Generally speaking,the level of education waslow and frequently went nofurther than primary school.6. Employment market:employment is a very importantmeans of social integrationfor a person with disability.Very few employmentpossibilities existed (majorobstacle).7. Leisure activities:leisure activities representa means of socialisationwhich guards against therisk of social marginalisationof people with disability,© R. de Riedmatten / Handicap International16

frequently excluded fromemployment and learning.Leisure activities were nonexistent(34% confirmedthis) or were consideredinaccessible (34% confirmedthis also).8. Social policies:the aim is to ensure theoperation of human rights,regardless of the differences,including those associatedwith impaiment, sex,age or ethnic origin, andto introduce the necessarypolitical gestures to contributeto the equalisation ofopportunities. Suitable servicesshould be established,measures encouraging scholasticintegration be takenand a social security systemdeveloped to fight againstthe social exclusion creationprocess. The newpolitical framework maywell have been seen as afacilitator, but policy implementationwas consideredto be a major obstacle.An analysis of the resultstends towards validating thepriority actions chosen byHandicap International inall its programmes, in fullrecognition of the magnitudeof the needs to be covered,and therefore the fundamentalrequirement to networkwith all the other agents inthe field (mutual aid groups,public services, NGOs, etc.)able to support our action.ProspectsIn Kosovo we are endeavouringto produce relevantand accessible information.Defending the interests ofpeople with disability anddefining a suitable legal frameworkis the work of localagents. A long road awaitsthe civil society agentsbetween the idealism ofinternational standards andthe reality of Kosovo today.SHOPSMACROWORKFAMILYProspects for use and refinementof the instrumentare promising for HandicapInternational. A disabilitymonitoring project is beingestablished for South-EasternEurope. The survey inKosovo could be extended toother countries in the regioncurrently undergoing a politicalreform process. Raphaël de Riedmatten,in conjunctionwith Gravir.Analysis conceptual diagramMESOLEISURERULESEQUIPMENTPERSONMICROENVIRONMENTTECHNICAL ASSISTANCERESIDENCEFRIENDSANALYSIS SENSEEDUCATIONEQUAL OPPORTUNITIES PROGRAMSPUBLICUTILITIESSource: Gravir17 L’interactif no. 10 - December 2002

Understanding disability: look, then actHCP: A GLOBAL APPROACH 8The handicap creation process(HCP) is a global approachwhich considersdisability not as a fixed“state” but as a processwhich limits the person’sactivities. Handicap is considereda disturbance ina person’s life habits as aresult of personal factors,impairment or disability,or environmental factors(obstacles). It is therefore arelative “situation” whichvaries according to thecontext and the environment,but which can alsobe modified as much byreducing the impairmentand developing capabilitiesas by adapting theenvironment.A risk factor is an elementlikely to cause disease,trauma or any other disruptionto a person’s integrityor development.Handicap Internationaldeals with risk factorsby its mine clearanceoperations, awarenessraisingto the danger oflandmines and AIDS orfilariasis prevention.A personal factor is acharacteristic belongingto a person (age, sex,sociocultural identity, etc.).Through its support programmesfor functionalrehabilitation services,Handicap Internationalreduces the effect ofimpairment and reinforcescapabilities.An environmental factoris a social or physicaldimension which determinesthe organisationand context of a society: a facilitator contributesto achieving life habits.Information for a changein attitude towards difference,handicap policies,accessible infrastructuresare facilitator environmentalfactors; an obstacle hindersachieving life habits. Discriminatoryattitudes, thestate of roads or staircases,atmospheric pollution canall be obstacles.A life habit is a currentactivity or a social rolepromoted by the person orhis sociocultural context.It guarantees the person’ssurvival and blossomingthroughout his life. Asocial participation situationmeans the full achievementof life habits. Onthe other hand, a handicapsituation is the partialor non-achievement oflife habits resulting fromthe interaction betweenpersonal and environmentalfactors.RISK FACTORSCauseMODELOrganic systemPERSONAL FACTORSCapabilitiesENVIRONMENTALFACTORSIntegrityImpairmentAbilityDisabilityFacilitatorObstacleInteractionLIFE HABITSParticipationHandicap situation8RIPPH18

B I B L I O G R A P H YFile based on:• “Une nouvelle approche de la différence. Commentrepenser le handicap”, Cahiers médico-sociaux,edited by Raphaël de Riedmatten, Ed. Médecine etHygiène, Geneva, 2001.and particularly contributions by:• Ravaud J.-F., “Vers un modèle social du handicap.L’influence des organisations internationales et desmouvements de personnes handicapées”, p. 55-68;• Fougeyrollas P., “Le processus de production du handicap: l’expérience québécoise”, p. 101-122;• Situation Analysis of People with Disability in Kosovo,Gravir and Handicap International, Brussels-Lyon,2002.References in FrenchDéclic, le magazine de la famille et du handicap, HandicapInternational.Fougeyrollas P., Noreau L. and St Michel G., “La mesurede la qualité de l’environnement”, Réseau internationalCIDIH et facteurs environnementaux, 9, 1997.Fougeyrollas P., Le processus de production culturelledu handicap. Contextes sociohistoriques du développementdes connaissances dans le champ des différencescorporelles et fonctionnelles, CQCIDIH-SCCIDIH,Quebec, 1995 (RIPPH).References in EnglishFougeyrollas P., “Documenting environmental factorsfor preventing the handicap creation process: Quebeccontributions relating to ICIDH and social participationof people with functional differences”, Disabilityand Rehabilitation, 17, 1995, p. 145-153.Note on the Agenda: Human Rights of Peoplewith Mental Disability in Kosovo, Mental DisabilityRight International, Washington DC, August 2002.Krefting D., Understanding Community Approachesto Handicap in Development (CAHD), HandicapInternational, March 2001.Quinn G. and Degener T., Human Rights and Disability.The Current Use and Future Potentional of UnitedNation Human Rights Instruments in the Context ofDisability, United Nations, February 2002.Ravaud J.-F. and Stiker H.-J.,“Inclusion/Exclusion:an analysis of historical and cultural meanings”, inAlbrecht G.-L., Seelman K.-D. and Bury M. (éds), Handbookof Disability Studies, Sage Publications, ThousandOaks (California, United States), London (GreatBritain), 2001, 490-512.Sausse S., Le miroir brisé. L’enfant handicapé, safamille et le psychanalyste, Calmann-Lévy, Paris, 1996.Stiker H.-J., Corps infirmes et sociétés, Aubier, Paris,1982 (new edition by Dunod, Paris, 1997).Albrecht G.-L., Ravaud J.-F., Stiker H.-J., “L’émergencedes disability studies : état des lieux et perspectives”,Sciences sociales et Santé, 2001, 19(4):43-73.19L’interactif no. 10 - December 2002