disability the missing puzzle piece baseline review of the situation of people with disabilities...

7/28/2019 Disability the Missing Puzzle Piece Baseline review of the situation of people with disabilities in Macedonia

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DISABILITY

THE MISSING PUZZLE PIECE

Baseline rewiev

of the situation of people

with disabilities in Macedonia

POLIO PLUS

moement agaisnt disability

Skopje, 2012


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Disability the missing puzzle pieceBaseline rewie of the situation of people with disabilities

in Macedonia

Zvonko Shavreski, Chief Editor

Elena Kocoska, Co - editor

Autors:

Dr. Vlado Karanakov, Vladimir Lazovski, Dusko Minovski,

Elena Kocoska, Zaneta Poposka PhD, Zoran Dodevski,Katerina Kolozova PhD, Silva Pesik, Ljubomir Bubevski,

Maja Kojceva Master, Miki Ignjatovic, Natasha Postolovska,

Suad Zahirovic, Zvonko Shavreski, Tatjana Stankovikj-Belovska

Concept and methodology contributors

Saso Klekovski

Daniela Stojanova

Lecturer:

Maja Kojceva, Master

Proofreader:

Slobodan Markovski

Translation and interpretation:

ESP - Translation and Interpretation agency

Project team:

Ilinka Staletovic, Kristina Naceva, Sanja Trajkovska,Boban Manevski, Vlado Nikolov


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Baseline rewiev of the situation of people with disabilities in Macedonia (2012) 5

CONTENT

Acronyms ............................................................................................. 7

Prologue ................................................................................................ 9

Eecutie Summary .......................................................................... 11

1. BASIC CONSIDERATIONS ......................................... 13

1.1. Methodology ........................................................................... 15

1.2. Position .................................................................................... 17

1.3. Context ...................................................................................... 20

1.4. Institutions ................................................................................. 22

2. GENERAL ISSUES ....................................................... 25

2.1. Denition .................................................................................... 27

2.2. Terminology ................................................................................29

2.3. Statistics ...................................................................................... 31

2.4. Legislation .................................................................................. 33

2.5. Civil Organizations .................................................................... 38

3. SPECIFIC AREAS ......................................................... 47

3.1. Education ................................................................................... 49

3.2. Employment ............................................................................... 53

3.3. Health ......................................................................................... 58

3.4. Social Welfare ............................................................................ 63

3.5. (De) Institutionalization ............................................................. 70

3.6. Accessibility /Availability ........................................................... 74

3.7. Justice and Judicial System ........................................................ 80

3.8. (Non) Discrimination .................................................................. 83

3.9. Family Life .................................................................................. 87

3.10. Culture ......................................................................................90

3.11. Sport ......................................................................................... 93


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Disability - the missing puzzle piece

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4. CROSSCUTING ............................................................. 95

4.1. Multiple discrimination ................................................................ 97

4.2. Political Participation .................................................................. 1024.3. Universal Design .......................................................................... 105

4.4. Religion ........................................................................................ 107

4.5. Services of Support and Independent Living .............................. 109

4.6. Legal Capacity ............................................................................ 113

4.7. Information Technology .............................................................. 116

4.8. Media .......................................................................................... 119

4.9. Public Awareness ........................................................................ 122

4.10. Monitoring mechanism ............................................................. 126

In closing ......................................................................... 129

Bibliography .......................................................................... 131


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ACRONYMS

ESARM Employment Service Agency of Republic of Macedonia

GDP Gross Domestic Product

CSO Civil Society Organizations

HIFM Health Insurance Fond of Macedonia

PDFM Pension and Disability Fund of Macedonia

RM Republic of Macedonia

GRM Government of the Republic of Macedonia

ARM Assembly of the Republic of Macedonia

EU European Union

UN United Nations

CRPD Convention on the Right of Persons with Disability

OP Optional Protocol

PDO Disability People Organizations

MLSP Ministry of Labor and Social Policy

MF Ministry of Finance

MES Ministry of Education and Science

MC Ministry of Culture

ME Ministry of EconomyMTC Ministry of Transport and Communications

MISA Ministry of Information Society and Administration

OSCE Organization for Security and Co-operation

UNDP United Nation Development Fond

UNICEF The United Nations Childrens Fund

MCIC Macedonian Center for International Cooperation

NCGE National Council for Gender Equality

NCDOM National Council of Disability Organizations of Macedonia

CPD Commission for Protection from DiscriminationCIRa Center for Institutional Development

CSA Center for Social Affairs

DC Daily Center

IPPG Interparty Parliamentary Group

SLRDPD Systemic Law for the Rights and Dignity of People with Disabilities

LAP Local Action Plan

LSG Local Self-Governance

PP Political Parties

PS Primary School

SCMUS Ss. Cyril and Methodius University in Skopje


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CC Center for Culture

MNT Macedonian National Theatre

HC Health Center

PHI Private Health Institution

MRTV Macedonian Radio and Television

AJM Association of Journalists of MacedoniaBCRM Broadcasting Council of the Republic of Macedonia

IMF International Monetary Fund

WHO World Health Organization

LSP Law for Social Protection

ADOM Association of Disability Organizations in Macedonia

NGO Non-Governmental Organizations

LSCOF Law for Civil Society Organizations and Foundations

ARCCP Association of Parents with Children with Cerebral Palsy

LEPD Law for Employment of Persons with DisabilityLHP Law for Health Protection

RIHP Republic Institute for Health Protection

IPCYS Institute for Protection of Children and Youth Skopje

SI Special Institution

IPRBB Institute for Protection and Rehabilitation Banja Bansko

CPT Company for Public Trafc

LNPP Law for Non-Procedure Practice

IMH Institute for Mental Health of Children and Youth Skopje

APDPM Association of Physically Disabled Persons of Macedonia

FSRPD Federation of Sports and Recreation of Persons with Disability of

Macedonia

SFDPM Sports Federation of Deaf Persons in Macedonia

SOM Special Olympics Macedonia

SEC State Election Commission

ICT Information-Communication Technologies

USAID U.S. Agency for International Development

DPI Disability People InternationalEASPD European Association of Service Providers for Persons with

Disabilities

EU European Union

ANED Academic Network of European Disability Experts

BANNET Balkan Ability Network for Disability

EDF European Disability Forum


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PROLOGUE

From philosophy of poverty ...

- to poverty of philosophyPrudon v.s Marks

Macedonia turns 20 years of its independence. Many urgent questions and pri-

orities arose in this period in front of the young state: from denials of its right

to statehood to negation of its national identity and the right to choose its own

name, from military conicts to economic blockades. In these turbulent years,

little space was left for prioritizing the issues in the social sphere.

In 2011, Macedonia ratied the UN Convention for the Rights of Persons with

Disabilities, thus setting yet another priority - integration of and respect for the

rights of people with disabilities. In less than two years, Macedonia is due to

submit the initial report to the UN Committee on the Rights of Persons with Dis-

abilities and to inform about its progress in implementing the Convention. But,

implementation parameters require a review of the situation.This is exactly the role of this report - to act as a review of the situation of peo-

ple with disabilities at the time of ratication of the Convention and as the basis

for monitoring and evaluating the progress of Macedonia in the rst years of its

implementation. This, of course, is its primary role, but no less important is also

the value of this review for independent researchers, for academic and scientic

purposes, development of other projects and activities, as well as a tool for the

institutions, civil society, media and all those who want to learn more about the

position of persons with disabilities in Macedonia and the degree of exercise of

their human rights.You might ask yourself Why Polio Plus? According to all surveys conducted

so far, Polio Plus enjoys the highest index of condence among citizens in Mace-

donia in comparison with the other civil sector organizations in general. With the

above in mind, Polio Plus deserves to play the main role in the preparation of this

report; and even more, it has a duty to compose it.

Believe it or not, the development of this report started nearly ve years ago.

Due to the delay of two key studies this report on which this report was contin-

gent, however, as well as to the short timeframe allowed for its development, the

report was initially frozen to the point of being even temporarily abandonedafterwards. Meanwhile (with the support of the CARDS program and in coop-

eration with EDF and Handicap International), a situational analysis of persons

Reiew of a period


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with disabilities in Macedonia was published, but - methodologically it was

limited only to the key articles of the Convention (then under development).

Some of the authors of that analysis (including the late Miodrag Ignjatovic, Edi-

tor-in-chief) are also the authors of parts of this paper.

The time and conditions have matured and a need arose of preparing a compre-

hensive report, not only in terms of the Convention, but also with regard to theother segments of social life. The Delegation of the European Commission to

Macedonia was fully understanding of this need and this report was supported

as part of the Polio Plus In quest of the lost agenda project under the 2011 IPA

program. The English version of this report was supported by the Australian

Embassy in Belgrade. Still, the individual project activities would have been

difcult to complete without the support the Polio Plus 2011 and 2012 annual

programs received from the CIVICA program, supported by SDC and imple-

mented by CIRa.

Any division and classication of social phenomena such as disability, whichhas a multilayer location and hybrid rights intertwined in almost all political and

socio-economic human rights, is necessarily at least questionable, if not even

problematic.

The number of opinions equals that of the experts, especially in such a complex

and relatively new mater. This is why we do not claim that this is a comprehen-

sive report or that ours is the only methodological approach.

Simply, this is the approach on which the authors agreed (see more in the section

on methodology). Any suggestions or alternative approaches are welcome.

By default, each analytical article is worth as much as its authors, data and refer-

ences are. Within the timeframe, resources and respondents available, as well as

within the nances allocated, we attempted to increase the value of the report in

this aspect.

Here I would like to thank the great number of authors (mentioned in the previ-

ous section) who - without any fee whatsoever - provided their expert contribu-

tion to the contents of this publication.

Finally, I must thank my colleagues and members of the Polio Plus who, although

not among the authors, helped make this report a reality with their contributions.

Zvonko Shavreski


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ExECUTIvE SUMMARYI did not have time to write you a short...

Paskal Blejs

The beginning of this report gives an explanation of the approach to the develo-pment (methodology), position (interest, motive of the reporter), context (en-

vironment and existing determinants of the time and space we live in), and theactors (institutions existing or found themselves in the period and space of this

review).Methodologically, this report is a combination of primary and secondary sourcesand has been complemented by examples aimed at promoting the exchange ofexperiences and learning, in the hope of initiating action. Emphasis is placed onthe illustration of bottlenecks or alarming situations that may be eliminated

and overcome by individual measures, without waiting for the introduction of acomprehensive system.Disability is dened as an issue of interest of the actors. Persons with disabilities,as both active and passive entities, have their own interest in having disability

perceived from the aspect of human rights, in line with the motto Nothing con-cerning us without us!This chapter includes a section dening the general context, the background ofthe developments and the stage and stage design of the main protagonist dis-

ability in Macedonia. The illustrations are short and presented through the prismof gures. The goal of this section is to serve as a parameter in the comparisonwith the situation in the specic areas, shown in the text below.At the end of the rst chapter, there is a section dening the actors. The dynamics

of any stage, playground or battleeld depends on the deployment of the playe-

rs, their role and their capacity. This is why they are so important in any basicanalysis. We placed a special emphasis on the institutions in this section, whilethe other actors are given more space in the second and third chapter.

0


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The second part focuses on the denition and terminology, legislation and theUN Convention, civil society organizations of persons with disabilities and theirnancing.There is no widely accepted denition of disability, but there are dened provi-sions and there are standards. The numerous contemporary regulations in ad-

vanced states do not pretend to establish a denition of disability; instead, theyprovide guidelines. It is similar in Macedonia. It is also similar in the CRPD. The

terminology is a true variety and mostly denes the position of the actor usingthe term. This is why we closely link the naming of disability here with the stage,actors and their interest, but also with the issues of stereotypes and unprepared-ness. This is exactly why a single terminology will be difcult to arrive at in the

future, as well.The statistics and data that may be derived and used in the statistical operationsand planning of actions are of priceless importance. The 2011 census of popula-

tion in Macedonia, however, was never completed. This is why we still use theWHO estimate that the number of persons with disabilities in developing coun-tries is approximately 10% of the total population.Further in the text, a review is given of the legislation, with a focus on the CRPD,but also on the work of the organizations of people with disabilities (and those

taking care of them), as well as on the nancing (money spent on this issue).While having even too many regulations in this area (there is even a special Lawon Organizations, Employing People with Disabilities), the state is still applyingdualism and due to its unequal nancing approach (everything for some and

nothing for others) even enhances the antagonism in the civil society sector.The need of fair regulation in this area is more than alarming.Chapter three elaborates the more present and important areas in the everyday

life of persons with disabilities.In line with our views and for the purpose of ensuring consistence with the basicphilosophy of this document, the issues of education and employment are placedat the beginning of this chapter. The basis reason for this is the fact that educa-tion is the only thing that may overcome disabilities and that protable economic

activity or employment is possible with appropriate and high-quality educationonly. The recommendations are complex and call for abandoning the system ofsegregated education and, consequently, segregated employment and position of

people with disabilities on the open labour market.While the entire report insists that disabilities must not be perceived as a medicalissue and dealt with as such, the health and health insurance aspects are of highsignicance for persons with disabilities. The rst reason for this is the fact that

disabilities arise as a result of accidents and health disorders that while beingtreated lead to temporary and often to permanent disability. The second reasonis that disabilities, in most of the cases, do not diminish: on the contrary, theyworsen as time goes by and are accompanied with side-products. This is why

persons with disabilities have a need of more frequent and higher-level medicalcare. Thence the measures for enhanced prevention and early detection, but alsofor an individualized approach and special reallocation of services in the secon-


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dary and tertiary healthcare when it comes to a specic health issue of a personwith disabilities.

Due to the lack of effective participation in the rst two areas (education andemployment) and the too large a need of the third one (health), persons with dis-abilities, instead of being temporary users of social assistance measures, most of

the time turn into permanent ones. This is where the vicious circle of exclusionand marginalization in the social life ends. The system of social protection ofpersons with disabilities is lacking a basic philosophy and an inclusive approach,as many of the measures of protection in essence result in effects contrary to

the intention of the legislator (an example of this is the social aid for mobility,which is not linked to an obligation of mobility and undermines the measures ofemploying people with disabilities).The further text unveils some of the areas and afrmative measures of the organ-

ized community, i.e. the state, which may minimize or break this vicious circle.

There is an alarming need of putting a stop to the practice of segregating thepersons with disabilities into institutions and emptying and closing such institu-tions. The process of deinstitutionalization has begun, but its completion is not

so certain as it is urgent because of the inhumane treatment in the institutions, thearbitrary procedure of referral to an institution, and the collision with the legalprocedure for depriving someone of their working capacity.What comes very close to this issue is the complementariness of the right to a

family life, the right to a family and parenthood, as well as the support of thenatural families of persons with disabilities, as a prevention of the subsequentunnecessary adoption and counterproductive institutionalization.The state is introducing the legal framework, but is unable to follow each case

individually. This is why the areas such as access to justice and judiciary, provi-sions and mechanisms for protection against discrimination, and activities toensure accessibility and availability of institutions, products and service for per-sons with disabilities as well are of great importance in the introduction of a

self-complementing, self-feeding, and self-learning system.Towards the end, the text includes areas that are oftentimes neglected, but es-sential for the ability of any human being to realize themselves as social beings.

Persons with disabilities are no different than anyone else. They are not personswith special needs; all they differ in is the way of realizing the same general hu-man needs. This is why we turn in this chapter to the inclusion of persons withdisabilities in the cultural life, sports and physical relaxation, entertainment and

religion.According to Murphy, anything that can go wrong will go wrong. This was takenas the motto of the section on multiple discrimination with a focus on the womenand children with disabilities, but also in the light of multiple disabilities (physi-

cal and sensory, for instance). Political participation appears to be an issue of ac-cess to justice. In essence, however, it is a multi-segment issue encompassing thefundamental stereotypes and hopelessness and defeatism of the voting categoryof persons, families and supporters who fail to recognize the strength conferred

to them by the right to vote.


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What is of great importance for the promotion of the inclusion of persons withdisabilities in the community is the process of improving the availability and ac-cessibility of the existing products and services for persons with disabilities by

adapting and standardizing the existing, as well as by introducing new forms andstandards under the principle of universal design.

This section includes a special focus on the treatment of the working capacity ofpersons with disabilities. This mainly refers to persons with intellectual impedi-

ments, but often (in line with the saying the good is destroyed together with thebad) includes other categories of disabilities as well. In this area, the govern-ment measures are, to say the least, confusing (if not even discriminatory). Be

it as it may, the practice of being deprived of ones working ability is a realityfaced by persons with disabilities in Macedonia and is as such sanctioned in theinternational law (ratied in our country) by more than one convention.The monitoring mechanisms of Article 33 of the CRPD is a multi-layer one,

including several entities and being somewhat vague, at least for us. This is whywe have devoted more attention to this issue. Macedonia will have to introducesuch a three-layer mechanism expert, coordinative, and independent - to moni-tor the implementation of the Convention. In addition (in accordance with para-

graph 3), the mechanism should also involve the organizations of persons withdisabilities. A true challenge, indeed.The media and the public are faced with much more segments of social life thanjust the phenomenon of disabilities. Yet, our story treats them separately, but

within the same group. The media such as they presently are in Macedonia have a need of sensation, negative promotion, and cheap production (mostlyreproduction). This economic trend creates a mental structure among the viewe-rs and serious psycho-dependence on information about relevant topics. And

what can be less relevant than the issue of persons with disabilities at a timewhen the entire nation is mourning the fact that Ali Riza is dying for the secondtime?

To be fair, the public awareness is at a much higher level than ten years ago.

Many known and unknown heroes in the transition worked hard to this goal andmuch money, energy and time were spent on this. And it gave results. This is allvery well. But, it is not good if we stay satised with that only. Human rights areno private property; they are common heritage.

The situation is not given once and for all, nor is it guaranteed forever.Nothing comes for free!!The benets must be constantly defended and this must be done in the hardest

way on a daily basis, at all places and times and by all of us, regardless ofhow much the others think that we dare or how much we re-examine ourselveswhether we have the right to dare.The nal section of the text presents the grouped recommendations resulting

from each of the issues elaborated.


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BASIC

CONSIDERATIONS

1

The golden rule when you want something to say is to introduce yourself.

But when you want to say something on so complex and multidimensional sub-

ject as the phenomenon of disability, it is not enough to state your name; you

should also provide a reply to the usual journalistic inquiries: Who are you?

What are you? Where are you from? Who are you with? And most importantly,

What do you stand for? i.e., What do you represent and what do you want todo?? Or, simply put: What good is all this?

This section presents the basic parameters that determine the portrayed image of

the phenomenon of disability.

In simple terms, from the very beginning we wanted to clearly present the ap-

proach towards the development (methodology), position (interest, motive of the

one who presents), context (environment and existing determinants of the time

and space in which we live), and nally the actors (institutions that exist or are

found in this region at the time of this review).

The beginning includes the part that explains what means we used to obtain and

how we made a summary of the information and conclusions. The combina-

tion of primary and secondary sources is supplemented by examples that should

promote exchange of experiences and learning in the hope of initiating action.

Emphasis is placed on the display of bottlenecks or alarming situations that do

not have to wait for establishment of a system to put out local res.

From the beginning of time, everything has been a matter of interest. People with

disabilities also have their own interest, especially when it comes to the phe-

nomenon of disabilities. We believe that the position of the authors is the mostimportant part that should be shown before entering into specic areas. And here

we have a clear standing point - disability is a human rights issue. Nothing else!


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But no less important is the position that people with disabilities should speak

up their mind. In accordance with the motto: Nothing about us - without us.

Nothing exists in isolation; everything is determined by the things surrounding

it. This is exactly why this chapter contains the part that determines the overall

context, the background of events and the stage and the set design of the main

character - disabilities in Macedonia. The stories are short and presented throughthe prism of gures.

We did not want to spend this report and these precious pages in presenting facts

that are mainly notorious and easily accessible from various sources. The pur-

pose of this section is to serve as a parameter in comparison with the situation in

specic areas, shown in the following section.

The section that denes the actors is at the end of the rst chapter.

The dynamics of any stage, playground or battleeld depends on the deployment

of the players, their role and their capacity. This is why they are so important in

any basic analysis.In this section, we place special emphasis on the institutions (state and para-

state i.e. those with public authority). Still, other actors are by no means for-

gotten. Quite contrary - most of the second and third chapters are devoted to

them.


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1.1. Methodology

Conceptual approach:

Most probably, the biggest reason behind the existence of the present Rashomon

effect of norms, measures, bodies and institutions that care for people with dis-

abilities is the lack of basic philosophy and purposeful approach. Decisions andaction do not stem from one basic, established concept and are often scattered,

not connected, and as a rule reected in ad-hoc measures and the so-called re

extinguishing actions.

This is supposed to be xed by the Convention on the Rights of Persons with

Disabilities, i.e. by consistent implementation of its policy and principles and

subsequently the proposed normative framework.

But we are aware that the inextricable chain required for successful resolution of

normative phenomenon of disability is contained in the formula:

R = (s + p + s+ p) + I(Where: The resolution (R) depends on (s) - the situation perceived, (p) - policy

aligned, (s) - strategy adopted and (p) - a real action plan. Implementation (I),

as the most important result, except in terms of recommendations for action is,

however, beyond this report.)

This doubtless formula makes the preparation of this report an unbiased, multi-

segmental, and scientically-based understanding of the conditions which must

precede any good policy and strategy that want to hope for a decent implementa-

tion.

Conceptually, we use the old Hegelian formula of thesis (presentation of thelegal framework and policies), antithesis (the situation, i.e. implementation), and

synthesis (guidelines and obligations arising out of the Convention to draft rec-

ommendations for action). The time frame covers the last 15 years, i.e. following

the adoption of the Law on Civil Society Associations and Foundations in 1997,

while content-wise we include the events, actors and products in this period.

Methodological approach:

The approach to the preparation of this report is comprehensive and represents a

mixture of different research methods.

In preparing this National Report on the Situation of People with Disabilities,

we used the CIVICUS methodology, which was adapted for the purpose of this

The book to read is not the onewhich thinks for you,

but the one which makes you think.

Harper Li


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report, and certainly the experience of the team that prepared the Macedonian

Index of Civil Society in Macedonia report in 2005 and 2010 and the 2007

National Report on the Situation of People with Disabilities in Macedonia.

In order to make a valid and complete assessment of the situation of people with

disabilities in Macedonia, it was necessary to collect accurate data and informa-

tion and to embrace the diversity of the organizations of people with disabilitiesas, for example, rural and urban or multi-sector and umbrella organizations of

people with disabilities. Also, in the preparation of this report we used all pos-

sible sources of information, so as to avoid overlapping with other research and

wasting the already scarce resources.

Finally, the methodology was designed to promote learning and, if possible, ac-

tivities of the participants. The approach was based on group work and indi-

vidual considerations that helped participants see themselves as part of the big

picture, think about their own organizational context, strategically reect on the

relations within the organization and in the other segments of society, as well asassess the collective needs.

The following methods were used in the development of this report:

Primary considerations:

Regional counseling: together with the Ludwig Boltzmann Institute, 8 regional

counselings were organized and organizations of people with disabilities, media,

and representatives of local government were invited to take part.

Focus groups: information from 3 focus groups of people with disabilities was

used as the primary source of the status and their personal experiences.

Personal experiences (stories) and statements of people with disabilities or the

actors in the respective area.

Secondary sources:

Studies and research: The project team began by reviewing the information pro-

vided in the existing studies, surveys and research and in relevant activities and

observations and linked them in a user-friendly report.

Legal Framework: Analysis of policies, strategies, laws and regulations.

Media analysis: over a period of one year, the printed media and national televi-

sion and electronic media were followed in terms of how and how much theyinform about people with disabilities.

Case study: To provide a clearer picture of some of the indicators, concrete ex-

amples of people with disabilities or activities of organizations of people with

disabilities are used.

Examples from the practice: positive examples placed in a frame as cases and

negative ones used as a paradox are given to serve as an idea or a guide to

quick resolution of the alarming situations or the so-called bottlenecks, guided

by the idea that we should not wait for a system to be constructed in order to

solve a small but bitter problem.


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Paraphrased, the above thought means that people would never be able to under-

stand the denitions and presentation of things until they realize that the positionof the group to which the author belongs lies behind the approach and presenta-

tion.

Therefore, to avoid confusion, here we want to clearly emphasize the position

and interest of the authors and publisher of this report. Donors on the other

hand, as noted, do not always share the opinion of the authors and express their

reserves to the contents of this publication.

But before we go into it, we need to determine the views on disability through-

out human history. Basically, there are three major groups, i.e. views of those

groups.TRADITIONAL MODEL

This is a mixture of different sorts of approaches, requests and understanding

of disability that followed human civilization from the earliest times to the late

middle ages (and in some places even to later times - until the present).

In the eyes of this group, disability is a burden that is imposed on the com-

munity through one of its members. The reasons are varied and mainly hard to

understand, while the solution is commonly seen in rejection or isolation of the

member who has the problem.

Religion, as a view of the world, has its attitude towards disability. The range

varies from the understanding that disability is a divine punishment for some

past sins (demonology), to the view that it is a temptation of human kindness

(Martin Luther). Polytheism, though older, went even further and created gods

with disabilities, as a reection of earthly life (the example of the favorite, disa-

bled god Hephaestus, or Vulcan, in the Greek and Roman mythology, respec-

tively). Ideology, as a system of values and view of the world, does not exclude

disability as an issue and its approach to it depends on the basic ideological prin-

ciples. The extremes are different here as well - from the Roman Homo homini

lupus est, where even the disabled is just another wolf, up to the advocates of the

theory of natural right and return to nature.

1.2. Position

People have always been and will be naive creaturesof deceit and self-deceit until they realize that it is

the interests of this or that individual, this or that

group that stand behind every religious, ideological,

political, or professional statement, opinion or phrase

Vladimir I. Lenin


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MEDICAL MODEL

For people who hold this course, disability is an impaired health condition. This

condition, consequently and understandably, prefers medical treatment above

all, as disability is a disease and - according to this group - it can be treated

like any disease. The defectology view develops the medical model that, for the

rst time, recognizes the educational component. Initiated by behaviorism andupgraded by the initial successes, this model and its supporters (mostly professi-

onals, humanitarian workers and perseverant parents) believe that disability can

be overcome as a condition. The emphasis is thus placed on early prevention,

technology in the service of medicine and special training and special education.

SOCIAL MODEL

The new civic movements of the early 60s are very conducive of and develop

this view, which received its own independent form and strong supporters in the

mid 70s. For them, even though disability in fact results from a certain health

problem and is in an increased and constant need of medical assistance, it hasnever been, nor will it ever be a medical phenomenon. In their view, disability is

simply a social issue. Their request is that the disabled be a part of the commu-

nity and their primary motive is to establish a complete inclusive system. Advo-

cates of this view put the emphasis of their work on providing a legal framework

for a decent and equitable life for people with disabilities, hoping that favorable

conditions for a rapid change in the mentality of the entire community will be

created by forcing the legal framework. For them, disability is neither a punish-

ment, nor a disease, but simply a state that they have to deal with.

MODELS AND GROUPS - CHAIN OF RELATIONSThis division and stratication of the term disability, in fact, has its basis in the

existence of three (stratied and exfoliated) large human groups, whose every-

day existence is connected with it (the disability).

So, there are:

1. People liing alongside disability;

2. People liing with disability and

3. People liing from disability.

The rst (largest) group is the group of people who look at disability standing

aside, believing that it can not happen to them. They may even have a positiveattitude towards resolving the issue, but perceive it in any case as something far

from their everyday life.

The second (smaller) group is the group of people with disability and their

family members who are confronted with the problems imposed by the special

needs and the satisfaction of such needs on a daily basis.

The third (smallest) group is the one that tries to detect, overcome or allevi-

ate the cause of disability. (Special educators, doctors, lawyers, human rights

activists). These people also encounter disability everyday and while for the rst

group disability is a life sentence, it is life for the second one and a life profes-

sion for the third.


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Very often, it happens that one group

shifts into another - the rst one can

move into one of the other two. That

is what life brings with it. Switching

between the latter two groups is rare.

It is usually a professional who (acci-dentally) becomes disabled, or a disa-

bled who has (intentionally) gained

expertise in human or social sciences.

These uctuations are useful and of

great signicance in understanding

the problem. Anyway, disability is

a real challenge, both for the person

who has it and for their family and the

overall community.ESSENCE

In its essence, disability (whatever the denition is) is a phenomenon of a physi-

ological nature (physical or mental), which in turn results in inability to do things

(in general or normal, everyday). Disability is thus a short circuit in the rela-

tion individual - community, i.e. a short circuit in the integral circuit, where

the right of individuals to satisfy its special needs crosscut with the obligations

of the community to enable this. With its own measures and positive action, the

organized community (state) should act to reduce the gap (for some even the

abyss) between the individual and society. There, that is our position!That is why the team that was selected to prepare this report is composed of

members of all three groups with one single criterion - to look at disability in the

light of human rights!

Graphic 1 The three major groups related to the disability

Graphic 2 Location of disability phenomenom


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22

1.3. Contet

Those who cannot remember the past

are condemned to repeat it.George Santayana

When analyzing any sphere of society, we can not exclude the environment.

Everything that exists, we see and know is determined by something else. Nature

exists in the interdependence of segments governed by natural laws. It is similar

with the existence of the society.

Disability as a social phenomenon can not be observed outside other social de-terminants. This is why, in an attempt to present the picture of the situation of

people with disabilities in Macedonia, on the following few pages we will rst

look at some parameters that should portray Macedonia in the global situation of

the space and time we live in.

Basic information

Macedonia joined the UN in April 1993 and is part of the large family of 192

countries that constitute the largest intergovernmental organization. With its

25,713 km2, it is the 148th country in the world in terms of its size; the situation

is similar with the population (2002 Census) - with its 2,022,000 inhabitants (82per km2), the country is on the 142nd position and, in this regard, it is among

the smaller states. In terms of the other parameters that are important for deter-

mining the state of one country, in this case Macedonia, its ranking signicantly

exceeds its size and population.

According to the assessment of the nominal GDP (Gross domestic product),

Macedonia has 10,113 billion dollars that translates into 4,911 dollars per capita

and - according to IMFs estimation - it ranks as the 93rd country in the world.

Macedonia has been assigned a high HDI (Human Development Index - com-

parative data on life expectancy, education and living standard) of 0.728 and

stands at the 78th position in the world.

EU integrations

The process of integration of Macedonia in the European Union began with the

gaining of independence in 1991 and was formalized in 2001 by signing the

Stabilization and Association Agreement with the European Union (entered into

force on 1 April 2004). In December 2005, Macedonia was granted a candidate

status and ever since the European Commission has been publishing annual pro-

gress reports on the country, with emphasis on the reforms that should be com-pleted. Since 2009, the European Commission recommended on three occasions

that the negotiations for Macedonias integration into the European Union start.


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Due to the name dispute with Greece, however, as well as to the need of unani-

mous vote of EU Member States for accession of new members, Macedonia is

still unable to pass this barrier.

But, regardless of impasse situation with this dispute, the EU integration process

is ongoing, especially in the eld of harmonization of the legal framework in the

economic and social spheres. The social dimension of the EU integration and the

harmonization of the anti-discrimination legislation are especially important for

the people with disabilities in Macedonia.

Economic Deelopment

Following the 2001 crisis, Macedonia managed to maintain macroeconomic sta-

bility with low ination and a scal balance. Prior to the global economic cri-

sis, the Macedonian economy had solid growth, with the GDP growth rangingbetween 5% and 6%. Macedonia was spared from the rst wave of the global

economic crisis in 2008, but not from the second one (the so-called debt crisis):

in 2009, for the rst time since 2001, the Macedonian economy entered into a

recession. According to the March 2011 report of the State Statistical Ofce, the

gross domestic product growth in the last three quarters of 2010 was 2.3%. But

the recent re-balance of the budget (only three months after its adoption) is not

announcing bright days for the social sphere in 2012.

Social picture

Macedonia holds an infamous leading position in Europe when it comes to un-employment. The labor force in Macedonia is 65% of its population and the total

number of unemployed (persons over 15 years) in 2010 was almost 300,000.

Until 2005, the number of unemployed

steadily increased and reached a

rate of 37.3%. Since 2006, with

great efforts and active employ-

ment measures this increase has

been retained and even reduced to

30.9% in 2011. The most alarmingpercentage of unemployed is that

Diagram no.3: Gross Domestic Product Trends

Believe or not, in the global picture Ma-

cedonia is just for one at the top 10 coun-

tries in the world. According the CIA data

Macedonia is on the 6th place of militaryexpenditure with its gross domestic

product

PARADOx


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24

of young people (between 15 and 24) which, although reduced in recent years,

is still above 50%.

The level of education of the population in Macedonia is also lagging behind the

European standards. Over 18% of persons older than 15 have no education or

have incomplete primary education. 35% have primary and lower (two to three

years of craft school) secondary education. 37% have regular (4 - year) seconda-ry education, 3% are college graduates, 6.5% have a university degree and only

insignicant 0.3% have completed their postgraduate studies. The recent reforms

in education (compulsory secondary education), actions for computerization and

dispersed studies promise serious advancements of these percentages, but - as in

any systematic endeavor - results take time.

Macedonia is also characterized by high levels of poverty and social exclusion.

According to the State Statistical Ofce, the percentage of poverty is 30.9%,

which means that almost every third person in Macedonia is poor. The percenta-

ge of poverty among the unemployed is 44.8%. The percentage of poor headsof families without adequate education is above 59%. In essence, these gures

show that the solution to one problem lies in solving another one.

Whether we want to admit it or not, the solutions to problems that people with

disability in Macedonia are faced with are determined by the above situation and

will have to follow the dynamics of those issues.

Linked: statistics, education, employment

1.4. InstitutionsThe only thing that saves us

from the bureaucracy is its inefciencyEugen Mekarti

Macedonia, as a country born in socialist etatism and with centralized economy,

is heavily institutionalized. Recent reforms and decentralization have created

more institutions, government bodies and agencies and their counterparts at the

local level. The Ohrid agreement savors this with a system of complex rules andrelations of the so-called consensual democracy.

Apart from being expensive, this system is also often ineffective.

When we mapped the institutions that are responsible (or care) for people with

disabilities, the institution-gram turned out to be very simple. In the middle, there

is the Ministry of Labor and Social Policy (MLSP) with its organs and agencies

and other various organs and their bodies with small and undened coordination

are scattered around.

MLSP is divided into 10 sectors: labor; pension and disability insurance; equal

opportunities; social protection; inspection; protection of children; European in-tegration; legal and normative affairs; budget; nance and accounting; and coor-

dination and technical assistance to the minister.


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Several units operate within the MLSP. The Equal Opportunity Unit includes the

Unit for People with Disabilities (one employee) as a focal point. The majority

of the issues that concern people with disabilities are part of the work of other

sectors.

Besides the units within the ministry, the Administration of issues of veterans

and war invalids and the State Labor Inspectorate also form a part of this minis-try. 30 centers for social work are included in the Social Welfare Sector.

In addition to supervising these bodies, the MLSP is also responsible for, i.e.

supervises the work of the Employment Agency of the Republic of Macedonia,

the Pension and Disability Insurance Fund and the Agency for Supervision of

Capital Funded Pension Insurance companies.

10 facilities (homes, institutions) for accommodation of and care for different

categories of vulnerable persons operate under the MLSP. Among them, those

relevant to people with disabilities are the Special Institution in Demir Kapija

and the Banja Bansko Institution.The Ministry is also responsible for the operation of the network of day care

centers for people with disabilities. Some of them are coordinated directly by the

Ministry and some by means of funding the activities of civic organizations that

run these day centers.

The next institution of importance for the disabled (with much less competencies

than MLSP) is the Ministry of Education and Science (MES). People with dis-

abilities are included in the educational process in different ways, starting with

integrated education, special classes and educational programs, engagement of

defectologists in the teaching, and ending with special and boarding schools.

The Bureau for Development of Education develops special programs and moni-

tors the work of these institutions. The State Education Inspectorate has in its

structure a unit for inspection and quality assessment of primary and secondary

specialized educational and pedagogical institutions.

Although people with disabilities are traditionally considered ill and disability

an illness in accordance with the medical model, the Ministry for Health has

no special competencies with regard to people with disabilities, except when

they are treated as patients. The Ministry of Health is responsible for the workof the committees for evaluation of the

degree and type of disability.

The Ministry for Transport and

Communications is responsible for

enforcement of the Law on Con-

struction and the Law on Spatial

Planning, which are of particular

importance for the right to access

and mobility of people with dis-abilities.

SPECIAL FUND

The excessive institutionalization and state regu-

lations are issues often mentioned in the country.

Interestingly enough, even despite this, the Spe-

cial Fund for Employment of People with Dis-

ability - which is automatically funded each year

with more than 3.000.000 euros - does not have itsown Board?!

PARADOx


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26

Macedonia has set up a National Coordination Body for the people with dis-

abilities whose members include representatives of a dozen ministries, as well

as representatives of organizations of people with disabilities. According to the

president of this body (who is a person with disability himself), its role of a

coordinator of the ministries and institutions on issues concerning people with

disabilities still has to be won.The Association of Protective Companies (association of private companies that

employ people with disabilities under the Law for Employment of People with

Disability) has signicant responsibilities in the recruitment of the disabled and

in the monitoring and use of funds from the Special Fund for Employing People

with Disability. The public powers of the body often cause discussions about the

privileged and monopoly position of the companies it represents.

The Ombudsman is mandated with the protection of the rights of the citizens of

Macedonia - and thereby people with disability - against violations of their rights

by the state authorities.Recently, a unit with a Deputy Ombudsman for People with Disabilities began

operating under this institution. It is still early to evaluate the work of this insti-

tution, but what is important is that this body may act as part of the monitoring

mechanism pursuant to Article 33 of the Convention on the Rights of Persons

with Disabilities.

Recently, the Committee for Protection against Discrimination was set up in the

country; in its work during the rst mandate, the committee gave priority to the

rights of people with disabilities, but due to the brief period of activity, its role in

advancing the rights of people with disabilities remains to be proven.

At local level, there are Committees for Equal Opportunities in the municipali-

ties, which were given a mandate broader than just gender issues last year.

There is no information as to how they are coping with the expanded mandate

and whether this is benecial for people with disabilities.

UNDP and OSCE, as interstate organizations, have permanent missions in

Macedonia and undertake activities within their programs that concern people

with disability.

Through the PROGRESS, EIDHR and IPA programs, the Delegation of the Eu-ropean Commission provides support for activities (governmental and nongov-

ernmental) aimed at inclusion of people with disability and regularly monitors

the situation of people with disability in their annual progress reports on Mace-

donias EU integration.

Conclusion:

There is an evident need of establishing coordination between the institutions,

conducting consultations with civil society organizations, and increasing the ca-

pacities of both.


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GENERAL ISSUES

General questions require general answer No way!

This is the most common mistake when creating a speech or doctoral disserta-

tion. It is important to respond to general questions specically and as clearly as

possible and to place them in the context of the position and methodology of the

author / authors, in order to simplify specic areas and issues and to highlight the

recommendations for action.

This is exactly why our focus in this section will be on the shortcomings that arenot necessarily harmful, as well as on the surplus issues, i.e. one that do not

necessarily complement something. The rst three reviews in this chapter in-

clude articles about topics that are clear to everyone, but when we discuss about

them, we seem to be oating through terra incognita.

Doctors will say that a correct diagnosis is half the cure. By analogy, if the diag-

nosis in medicine corresponds with the denitions of social phenomena, then we

are missing half the cure for the undened phenomenon of disability.

We agree, but this is not medicine.

There is no accepted denition of disability, but there are dened provisions,

there are standards. Many modern regulations in the developed countries do not

tend to establish a denition of disability; instead, they only provide benchmarks

for it. It is similar in this country. It is the same in the UN Convention.

Terminology seems to be the tail of the denition. Or is it perhaps the ancient

egg or chicken dilemma? But lets not forget that the terminology (or designa-

tion) usually denes the position of the actor who uses the term. Therefore, the

designation of the disability in this review is closely associated with the stage,

the actors and their interests, but also with the issues of stereotyping and unpre-paredness.

The one that is not counted - does not exist.

2


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28

Statistics and data that can be segregated and used during statistical operations

and action planning are of great importance. We do not have them.

Yet, it is not as if we had nothing.

Although the 2011 census in the Republic of Macedonia was not implemented,

it included a box for people with disabilities for the very rst time; lets not lose

hope - one day, it will happen. What is more important is that we have compara-tive data that may serve for preliminary action.

The second part of this chapter, unlike the previous one, includes areas that con-

tain more provisions, denitions and percentages, but - due to the level of intere-

st, personal goals and daily politics are usually not clear, in mutual collision,

and in a nancially problematic constellation.

Special emphasis is given to legislation focusing on the UN Convention on the

Rights of Persons with disabilities, as well as to the functioning of civil society

organizations of people with disabilities (and those who care for them) and to

nancing (money spent in this area).To make it even clearer, some of these areas probably belong to chapter four, but

having in mind the positioning, interest and actors, we place them here as they

illuminate the impact on specic areas.


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Neither the constitution nor the Law on Social Protection or any other regulation

set a single denition for the term people with disability.Article 2 of the Law on Employment of People with Disability provides that un-

der this law, a invalid person is a person with impaired vision, hearing, voice,

speech, language, a physically disabled person, a person with intellectual de-

velopment impediments, and a person with multiple disabilities who, due to the

degree of invalidity, has specic needs at the working place.

The rulebook for assessing the specic needs of people with impediments in

their physical or mental development postulates the following:

1. People with visual impairenments

are those with low vision or blindor people whose vision is reduced

to the extent of medical standards

listed in the Rulebook. According

to the Rulebook, a practically blind

person shall be a person with such a

reduced functional ability of the or-

gan of sight that prevents education

largely through visual means.

2. Persons with impaired hearing,

depending on the degree of impair-

ment, are divided into deaf and hard

of hearing persons, according to the

medical standards outlined in the

Rulebook.

3. People with impairments in

speech and voice are those whose

speech does not correspond to theirage or it is not intelligible, gram-

matically and syntactically con-

2.1. Denition

Disability is like pornography:

difcult to dene, but easy to recognizeZvonko Shavreski

The Convention does not explicitly dene the

word disability. The Convention Preamble

states that disability is an evolving and dy-

namic concept, which is subjected to tempo-

rary adjustments over time, despite the vari-

ous socio-economic developments.

The Convention itself states that disability

should be seen as the result of interaction

between the person and the environment in

which the person lives, and that it is not some-

thing that occurs in the life of the individual as

a result of any disorder.

The Convention does not give a denition for

the term person with disability. But it sug-

gests that the term includes people who have

long-term physical, mental or intellectual

disability or sensory disabilities, who face

negative attitudes or physical obstacles andcan not fully participate in society.

CONvENTION


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30

structed, with convulsive disturbances

in the mechanism and the automa-

tism of speech and that require spe-

cial treatment. On such basis, the

Rulebook divides these individuals

into groups, according to certainmedical standards.

4. Physical invalidity, according to

the Rulebook, is a condition of de-

creased or lost functional ability

in one or more organs of the body,

which signicantly reduces a per-

sons ability to satisfy the basic

living needs.

5. Mental disability, according to theRulebook, is a condition of slower

or incomplete mental development,

which is characterized by distortion

of those abilities that appear during

the development period and contribute to the general level of intelligence, such

as cognitive, speech, motor and social weaknesses.

According to this Rulebook, persons with specic needs include the chronically

ill individuals and individuals with autism.

From the above mentioned, it can be concluded that this Rulebook mainly gives

medical denitions of disability, with elements of social dimension, but they are

far from the view that the issue of disability is a human rights issue.

Other, mainly secondary legislation acts, also have similar and very incomplete

different denitions of disability, differing in accordance with their needs. Some

of them are funny and some are so offensive that we decided not to include them

even as bad examples.

Worldwide, the attempts to dene disability are descriptive and often follow the

Convention. The laws of Australia and the Philippines are the most advancedones in terms of attempting to dene disability and people with disability.

Conclusion:

There is no established unique social denition of the term person with disability

in Macedonia. This is not such a serious problem, but efforts should be made to

unify the term and abandon the traditional designation, which is burdened with

stereotypes from the past.

Proposed measures:

Enhanced actions are needed in the Republic of Macedonia for disability to be

understood and treated as a social category and as a human rights issue in alldomains (legislation, education, media, public awareness etc..).

As dened by the International Organization

of People with Disability (Disability People

International - DPI), disability is a result ofthe interaction between the people with dis-

ability and the environment with negative at-

titudes and physical barriers

DPI

According to the denition in the Bill on the

Rights and Dignity of People with Disabili-

ties, the term disability means an impaired

relationship (communication) between the

people with disability and society.

SYSTEM LAW


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2.2. Terminology

Call me a pitcher if you want- do not break me! Proverb

In the theory and practice of the Republic of Macedonia, there is no single ac-cepted term for people with disability. In its Article 35, paragraph 3, the Consti-tution of Macedonia states that: The Republic of Macedonia provides particu-lar protection for invalid people and conditions for their inclusion in social life.The Law on Social Protection uses the terms people with physical impairen-

ments and person with intellectual development impediments.There is a Law for Employment of Invalids people in Macedonia in which, asin the title itself, the term invalid people is used.There is a Law on Pension and Disability Insurance, which uses the terms inva-lid people, invalid pension and invalid insurance.The 2005 Law on Labor Relations states that employers shall not put the appli-cant (hereinafter: candidate for employment) or employee in an unequal positionon the basis of race, color, sex, age, health condition or invalidity... (Article 6paragraph 1). Article 177, entitled Protection for People with invalidity andsubtitled Employment, Training or Re-training of People with invalidity statesthat employers shall provide protection for people with invalidity concerningemployment, training or re-training in accordance with Law.Article 178 entitled Labor Rights of invalids poeple reads: to the worker person with invalidity with residual or altered working ability ... the employeris obliged to provide... . Article 169 of the same Law talks about part-timeemployment for parent of a child with developmental invalidity and special edu-cational needs.The Rulebook for assessing the specic needs of people with impediments intheir physical or psychological development states that people with impedi-

ments in their physical and mental development who have special needs are:People with visual impairments (poor vision and blind), persons with impair-ments in voice, speech and language; Physically invalid persons, Mentally re-tarded persons (light, moderate, severe and deep retardation), autistic persons,chronically ill persons, persons with various impairments (persons with multipledevelopment impediments).The Law on Construction provides that constructions for public and businesspurposes shall be designed and constructed so that people with invalidity shall beprovided with access and ease of movement, stay and work in the construction.

(Article 11 Paragraph 1).The Law on Urban Planning postulates that barriers are created, building obsta-cles in cities and other settlements, which hinder the free movement of peoplewith invalidity.


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32

In 2001, the Government of the Republic of Macedonia adopted the NationalStrategy for Equal Rights of People with Disabilities in Macedonia. The text ofthis strategy makes use of terms such as people with invalidity, children withspecial needs, invalid youth, andpeople with physical, intellectual,psychological or sensitive impair-ments.In 2003, the Parliament of Macedo-nia adopted the Declaration for Pro-tection and Promotion of the Rightsof People with Special Needs, whichtalks about people with specialneeds, specic needs of peoplewith disability and people withdisability.

In the practice, there is also no uni-ed term, with the following termsbeing commonly used: invalids, in-valid people, disabled, handicapped,people with impediments in their in-tellectual development, people withspecial needs and to a lesser extent- people with impediments or peoplewith specic needs.

What is often used in the case ofchildren is the term children withdevelopment impediments or chil-dren with special needs or childrenwith special educational needs,when there is a need to emphasizethe educational segment of their de-velopment.The traditional disability organi-zations (with the exception of the

Center for Support of People withIntellectual Disabilities Message),the National Council of People withDisability, and the CoordinationBody for Equal Opportunities forPeople with Invalidity have accept-ed the term invalids people.A great share of scholars prefers theterm people with invalidity.

Newly established organizations tar-geting people with disability preferthe term people with handicap.

The almost complete dominance of the medi-

cal (biological, clinical) model of disability in

the domestic research practice related to the

problem of disability is a very serious obsta-

cle for institutional reform in the education

and social protection and deserves to be the

subject of a detailed critical review

The impression that the terms are only namesfor objective things, which are independent

from the researcher, is dominant; thus, sys-

tems of classication are created.

Translating the mental constructs of the au-

thor into a physical entity status corresponds

to the general sociopolitical and ideological

societal frames within which he or she acts.

The entire process is often hidden behind

increasingly complex methodological proce-

dures that create an illusion of scientic ob-

jectivity. Various post-paradigmatic thoughts

in social and human sciences rightly point to

the role that language / discourse has in the

realization of reality.

This article starts from the assumption that

hegemony, oppression and power relations

are woven into compelling narrative forms

through which scientists (unconsciously)

legitimize the status hierarchy and materialdifferences, which is particularly expressed

as a kind of humanistic diversity that is com-

monly associated with the attribute disability.

The way out must be sought in calling for

top-down reforms de-medication of the

existing concept of disability and the appro-

priate terminology apparatus with bottom-

up reforms, i.e. fundamental changes in so-

ciety itself by political action

Misha J. Ljubenovik

STATEMENT


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The media, in addition to the terms peoplewith invalidity or invalid people or peoplewith handicap, often use the term peoplewith special needs.There is no generally accepted term for peo-ple with invalidity in Macedonia. The termpeople with disabilities prevails, but theterms people with handicap, people withspecial needs and people with intellectualdisabilities are also still used.

There is no generally accepted term forpeople with disabilities in Macedonia.The term people with invalidity prevails,

but the terms people with handicap, peoplewith special needs and people with intellec-tual disabilities are also used.

The English version of the Conven-

tion uses the term persons with dis-

ability.

There is an argument that there may

be multiple variants in the Mace-

donian translation as inability or

disability but the fact is that it can

never be translated as invalid peo-

ple (invalid = worthless), especially

because of the offensive, pejorative

and negative meaning of the term.

But this argument was apparently

not taken into account when the of-

cial Macedonian translation of theConvention was done

CONvENTION

CONCLUSION

2.3. Statistics

The death of one man is a tragedy,the death of millions is a statistic

Josif V. Stalin

A story without figures

The public authorities and institutions responsible for the issues of people withdisabilities do not have complete statistics regarding the number of people withdisability and the type of their disabilities. They only have records of users of

certain types of social services or welfare, but except the data on the amountof compensation, there is no mention of other data that can be used for further

work.Despite the efforts of organizations of people with disability, the last census in

Republic of Macedonia in 2002 contained no box with questions related to dis-ability and the opportunity to collect such statistical indicators was thus missed.Fortunately, nine years later, after continuous lobbying and cooperation with theState Statistical Ofce, the issue of disability was introduced in the census lists

and the census ofcers were trained how to ask questions and record answers.And things started.Unfortunately, after several days, the implementation of the census was inter-

rupted for formal and political reasons and people with disabilities, their organi-zations and those working in this eld lost this valuable source of informationabout the number, distribution, structure, education and afnities of persons with


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34

disability and the opportunity to designan appropriate action in this eld. There

are no announcements for continuationof the census. Faced with this situation,we are left with nothing else to do but

to use the existing data and conduct acomparative analysis of data from othercountries and worldwide.According to the available statistical

data (2007 census) on people with dis-ability who receive some sort of socialaid (care by a third person or special aid),there are 13,063 people in this category

in the country, of whom 6,676 are chil-

dren and 6,387 adults. It should be not-ed here, however, that those are peoplewith a 100% disability and people who

have succeeded in winning this benetthrough an administrative struggle. Theothers are invisible to the state.DPOs have data on people with certain

types of disability, but only for thosewho have joined the respective organization; as a result, we can conclude that

these data are not complete, as they fail to include people who have not joinedthe organizations for various reasons. The biggest problem is that - due to the

right to freedom of association - some people are members of several associa-tions (e.g., the Association of the Blind and the Association of Civilians Victimsof War and the Sports Federation), which makes the data completely unusable.

The World Health Organization (WHO) recommends an estimate of 10% of thepopulation of developing countries having some kind of disability.This estimate was conrmed in the case of Croatia, where the Census reported9.7% people with disabilities. For underdeveloped countries, due to the low level

of health care, the percentage goes above 15%.

There are no complete statistics for people

with disabilities in Macedonia.

Macedonia should adopt legislation whichwould establish a system for collecting,processing and analyzing statistical datafor people with disabilities, in accordance

with the principles of the Convention.

States signatories are obliged to collect

appropriate information, including sta-

tistical data and research, so as to be able

to formulate and implement appropriatepolicies aimed at implementation of the

Convention (Article 31).

Further on, it states that the process of

collecting and storing such informa-

tion should ensure respect for the right

to privacy, dignity and the rights of

people with disability, partnership with

organizations of people with disability

and other factors, as well to ensure the

comprehensiveness of the data required

(Article 31). The States signatories shall

undertake responsibility for the dissemi-

nation of these statistical data and shall

provide access to such data for people

with disability and for others.

CONvENTION

According to WHO (World Health Or-

ganization), there are supposed to be

over 200,000 people with some kind of

disability in Macedonia. If at least one

parent or child and one brother or sister

is added to this, we come to a gure ofone third of the population that is di-

rectly affected by disability.

WHO ESTIMATION

CONCLUSION

PROPOSED MEASURES


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The law is fortress on a hill that

armies cannot take or oods wash away Prophet Mohammed

2.4. Legislation

In Article 1 of its Constitution, the Republic of Macedonia, in addition to beingdened as a sovereign, independent and democratic State, is also dened as asocial one.

Article 35, paragraph 3 of the Constitution of of Macedonia States that the coun-try is responsible for the social protection and social security of citizens, guara-

ntees the right to help of the weak and the ones not able to work, and providesspecial protection for people with disabilities and conditions for their full inclu-

sion in the social life.

According to Article 54 paragraph 3 of this constitutive document, No restric-

tion of freedoms and rights shall discriminate on grounds of sex, race, colour,

religion, national or social origin, and property or social position.

These constitutional provisions practically mean an obligation of the State to

ensure formal equality of people with disabilities with the other citizens throughthe social policy measures and overall normative legal action; therefore, in addi-tion to taking care of their general needs, it should also take care of their specicneeds arising out of their disability.

After the Second World War, Macedonia established a system of protection forpeople with disabilities, which has the medical aproach on disability as it startingpoint and is strongly institutionalized. But it was the then current standpoint ofscience and it was the State that cared for people with disabilities, just like for

everything else. After the independence of Macedonia, the process of transition

led to impoverishment of the social sector, thus reducing the care and benetsenjoyed by people with disabilities. At the same time, the movement of peoplewith disabilities and their advocates gained in strength at a global level and there

was a shift from the previous medical model towards afrmation of the socialmodel and viewing disability as a human rights issue. This resulted in Mace-donia turning from a relatively advanced country with a complete system thatprovides care for all of its citizens, to a country that started to signicantly lag

behind, a country in which marginalization of the disabled is on the rise.Macedonia is a signatory to a number of international documents, legally or

morally binding it to take concrete action in this area, such as the UN Charter,the Universal Declaration of Human Rights (1948), UN Resolution on Standa-rd Rules on Equal Opportunities for People with Disabilities (1993, Resolution


36/138


36

RASHOMON EFFECT

The real problem in the existing legisla-

tion is that it has been enacted for vari-

ous specic interests and momentaryofcial policies (from purely scal ones

to ones out of solidarity and mercy) by

different legislators (even by different

countries - Yugoslavia, SRM), moti-

vated by different objectives and prin-

ciples, with an entirely different subject

areas of protection and arrangement.

The non-coexistence lies not only in the

fuzzy denition of the phenomenon of

disability and its designation, but alsoin the essential principles, the institutes

involved and the objectives of the legi-

slation.

PARADOx

PIECE OF PAPER

The Law on Employment of Peoplewith Disabilities postulates that all peo-

ple with disabilities, if they want to be

owners or managers, must appear in

front of a medical board to have their

managerial capabilities assessed (an

obligation that does not exist in any law

for any person or any function in the

Republic of Macedonia).

Just imagine - Stephen Hawking could

not become a member of the Academy

in Macedonia without such a piece ofpaper.

Polio Plus submitted an initiative with

the Constitutional Court of Macedonia

and a complaint with the Commision

for Protection against Discrimination.

Both institutions exempted themselves

on grounds of no competence. In un-

ofcial statements, two members of

these institutions said it was out-

rageous.P.S. The writer had to get such a docu-

ment for himself.

PARADOx

48/49), the European Convention on Hu-man Rights (1950), and nally the Con-vention on the Rights of Persons with

Disabilities (2006). Macedonia adopted itsNational Strategy for Equal Rights of Peo-

ple with Disabilities (2001, Ofcial Ga-zette no.101/01), revised in 2010, and theAssembly of the Republic of MacedoniasDeclaration for Protection and Promotionof the Rights of People with Disabilities

(July 23, 2003). These general commit-ments imposed a need to make them ope-rational, as well.From a quantitative point of view, Mace-

donia does not seem to lack legislationthat regulates the position of people withdisabilities. The review Collection ofMacedonian Regulations for People with

Disabilities (edition Justiciana, 2005,ISBN 9989-2357-1-6) identies 26 lawsand numerous regulations that govern therespective area to a greater or to a lesser

extent. The degree of involvement andscope of the applicable legislation vari-es from fragmentary mentions of peoplewith disabilities (e.g. the Law on Customs

O.G/ of RM 20/93) to the existence ofa special Law on Employment of Invalidpeople (as a lex specialis to the Law onLabour Relations). The timeframe of these

laws is relatively large (considering thecircumstances in Macedonia) and coverslaws adopted in the period from 1966 (e.g.Law on Determining Benets in the Pub-lic Transportation of Passengers O.G ofSRM no. 38/66, 18/77 and 10/79) until thelatest changes to the Law for Social Pro-

tection and Law for Employment of inva-l

disability the missing puzzle piece baseline review of the situation of people with disabilities...

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