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part iii achieving the change - Disability Monitor Initiative

part iii achieving the change - Disability Monitor Initiative

Beyond

Beyond De-institutionalisation: The Unsteady Transition towards an Enabling System in South East EuropeACHIEVING THE CHANGE: KEY STEPS AND SHARED RESPONSIBILITIES2. CHANGING PERCEPTIONS OF DISABILITYUN Standard Rule 1. Awareness Raising (extracts)States should take action to raise awareness in society about persons with disabilities, their rights,their needs, their potential and their contribution.• States should ensure that responsible authorities distribute up-to-date information on availableprogrammes and services to persons with disabilities, their families, professionals in the field andthe general public. Information to persons with disabilities should be presented in an accessibleform,• States should initiate and support information campaigns concerning persons with disabilitiesand disability policies, conveying the message that persons with disabilities are citizens with thesame rights and obligations as others, thus justifying measures to remove all obstacles to fullparticipation,• States should encourage the portrayal of persons with disabilities by the mass media in a positiveway; organizations of persons with disabilities should be consulted on this matter.Prejudices in society, including people with disabilitiesthemselves, are one of the main barriers to fullparticipation. People with disabilities are often seenas non-productive persons that need to be protectedrather than supported. Feelings of fear and shameare the perceptions associated with disability leadingto disempowerment, discrimination and exclusion.The practical implementation in shifting people'sperceptions of disability needs to be approached bydifferent stakeholders in three areas:• Raising awareness on disability,• Training professionals working in ordinary services,• Producing comprehensive and relevant informationon disability viewed through the holistic model that isaccessible to people with disabilities.2.1 Raising awareness on disabilityDisability awareness-raising key priorities• Sensitise the public around the new disabilityparadigm and new perceptions of disability,• Make the issue of disability visible in society,• Alert policy makers, professionals working withpeople with disabilities, media and politicians to theimportance of viewing disability in terms of equalrights and opportunities.Raising awareness is the first of the UN StandardRules as it is considered a precondition for equalopportunities of people with disabilities. It is one ofthe first steps in mobilising a shift in the disabilityparadigm on individual, community, and global levelsto new representations of people with disabilities,especially as the prejudices linked to disability comefrom ignorance and a lack of knowing the issues.Awareness raising brings visibility to the issue ofdisability, an issue that was largely hidden under theformer system so that the public is sensitised to a newway of thinking helping to break down barriers andlessen stigmas.Disability awareness-raising key target groups:• People with disabilities,• Their families,• Their communities,• Public service professionals,• Decision makers.Awareness raising campaigns should not be limitedsolely to raising public consciousness. They needto be targeted to key stakeholders in the changeprocess including public service professionals, media,policy makers, families of people with disabilitiesand their communities; all of the people who havean impact on the lives of people with disabilities.As David Tobis writes, part of the strategy formaking the transformation from over-protective careto community-based services is based on changingpublic opinion and mobilising community support 79 .Raising awareness amongst people withdisabilities themselves: a critical part ofawareness raisingAwareness raising must target people with disabilitiesthemselves raising their consciousness from beingpassive to proactive as citizens and therefore, frombeneficiaries to users of a community-based system.Policy makers, civil society, and families cannotassume that people with disabilities living under aparadigm that defines them as unequal citizens willbe mobilised to take part in an enabling systemwithout first changing their self-perception. A criticalstake in mobilising support for change is, therefore,that people with disabilities view themselves as equalmembers of society with the right and responsibility toparticipate in decision-making and social life.Today in the region, awareness-raising campaigns arelargely implemented by DPOs or through pilot projectsand initiatives. However, there is limited awarenessraising amongst ordinary service professionals ontopics such as inclusion, the holistic model fordisability, and mainstreaming. Disability is still largely79 Tobis, ibid, 2.102

Beyond De-institutionalisation: The Unsteady Transition towards an Enabling System in South East EuropeACHIEVING THE CHANGE: KEY STEPS AND SHARED RESPONSIBILITIESinvisible which is linked to the fact that informationis not accessible within society, especially for peoplewith disabilities.Initiatives for changeConsidering information and communication, thesignificant role of local organisations of people withdisabilities (DPOs) including unions of organisationsof people with disabilities should be pointed out.In the last decade, DPOs have helped to buildsuccessful community awareness campaigns at thelocal level throughout the region. Polio Plus, a localDPO in Macedonia, is an excellent example of strongawareness raising capable of presenting the issue ofdisability in the public sphere and challenging thepublic's perceptions of disability examined in spotlightnumber 9.Changing representations of disability can also beapproached through regional conferences, an excellentplatform for awareness raising. For example, theAssociation of Students with Disabilities in Serbiaorganised a conference on disability and educationwith other countries in the region as well as WesternEurope in order to mobilise students with disabilitiesin South East Europe and raise their awareness oninclusive education.Looking aheadThe states in the region should establish awarenessraising campaigns for schools and the public servicesystem, relying on the expertise of people withdisabilities as well as DPOs. An excellent opportunityfor facilitating this awareness-raising programmewould be for DPOs to develop partnerships withschools and universities in order to develop suchsensitisation programmes. Another important approachto awareness raising is regional conferences thatinclude associations and DPOs from Western Europein order to gain insight into their experiences with thedisability movement. Finally, it is important that DPOsshare learning and skills on building awareness raisingcampaigns with each other in order to understand thestakes and best practices.2.2 Information and researchon disability issuesThe aim of information and research on disabilityissues includes:• Providing accessible and relevant information topeople with disabilities on their rights and availableservices,• Informing policy-makers and other stakeholderson the situation of people with disabilities to helpdefine the needed changes and monitor theirimplementation,• Alert policy makers, professionals working withpeople with disabilities, media and politicians to theimportance of viewing disability in terms of equalrights and opportunities.The region has a severe lack of comprehensiveinformation on all aspects of disability especiallyconsidering research on the lives of people withdisabilities and the obstacles they face. Informationcollected by state social and health services isvery limited, grouping people with disabilities intocategories based on medical diagnosis, ignoring themajority of them and providing very little informationon their actual needs. NGOs are the leading forcein producing research and information on disabilitycurrently with little to no directive on the state levelto further this effort. Moreover, throughout SouthEast Europe, people with disabilities themselves arepoorly informed about their rights or existing servicesavailable to them and this lack of communicationfurther perpetuates their isolation and segregationfrom society. There is also limited reliable and precisedata on the situation regarding access to informationand communication for persons with disabilities in thisregion. In addition, there generally tends to be limitedinformation about government activities and policychanges on disability issues (Box 24).UN Standard Rule 13. Information and Research (extracts)UN Standard Rule 13 States assume the ultimate responsibility for the collection and disseminationof information on the living conditions of persons with disabilities and promote comprehensiveresearch on all aspects, including obstacles that affect the lives of persons with disabilities.• States should, at regular intervals, collect gender-specific statistics and other informationconcerning the living conditions of persons with disabilities,• States should consider establishing a data bank on disability, which would include statistics onavailable services and programmes as well as on the different groups of persons with disabilities,• States should develop and adopt terminology and criteria for the conduct of national surveys, incooperation with organizations of persons with disabilities,• States should facilitate the participation of persons with disabilities in data collection and research• States should support the exchange of research findings and experiences,• States should take measures to disseminate information and knowledge on disability to all politicaland administration levels…[…]103

Part III - villa martelli disability resources
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