Nouspr report

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Nouspr report

  1. 1. FOREWORD Dear Members, Partners and Friends, It is with my sincere gratitude that I present to you this report about the field research on safeguarding the rights of people with psychosocial disabilities in Rwanda; an exercise which NOUSPR has been engaged in for the first time and has successfully completed!NOUSPR has been involved in awareness raising and advocacy for the human rights ofpersons with psychosocial disabilities for quite some time. We organise members in groupsand support them to regain their place and status in their communities. We also advocatefor psychosocial disability to be included in the categories of disabilities in Rwanda.The strength of our approach is that those on the front line fighting for equality and justicefor users/survivors are those who have themselves been largely invisible within society,those who are refused a say, denied their basic human rights, have no access to education,no right to employment, to health, no right to vote – no rights at all!This report is a product of those who were chained to poles, abandoned in psychiatricfacilities by their relatives, disconnected from their families and pushed to the periphery oftheir normal everyday life. These are the same people who have broken their silence andgone public with powerful testimonies, with strong cases and evidence of human rightsviolations and with high sprit they suggest how this situation should be reversed. I amenormously grateful to them!NOUSPR is grateful to The Government of Rwanda that has, for the past few years,provided a levelled ground for marginalised groups to easily articulate their human rightsissues. The signing of the Convention on the Rights of Persons with a Disability (CRPD)and its protocol, amending of The Constitution of The Republic of Rwanda to accommodatethe National Council of Persons with Disabilities (NCPD), the enactment of the law thatprotects people with disabilities in general and the eight ministerial orders are just a few ofthe many examples that shows that our Government is a Government that truly cares aboutthe needs of its citizens.We recognise the invaluable contribution of Voluntary Service Overseas (VSO) and SarahChalloner in particular, who financed this research and using her position as DisabilityProgramme Manager she has been exceptionally good to the Disabled PersonsOrganisations (DPOs) in Rwanda. Since NOUSPR’s inception her support has pushedPersons with Psychosocial Disabilities thus far.We are thankful to Mr. David Beck, Chief Executive of Action For Street Kids (ASK) whogenerously contributed towards the preparations of this research, and the Open SocietyFoundation (O.S.F) which earlier funded NOUSPR’s awareness raising and advocacyproject from which the need for this research was identified.I would like to single out Mr. David McCabe, a VSO volunteer who has been our technicaladvisor since September 2011 and who leaves us this September 2012, not only has heconceived, designed, directed this research and produced this report but has also been theself-starter of NOUSPR’s daily activities. His secret of getting things done has won him anirreplaceable position in both the organisation and in the hearts of its members.Though inevitably there will continue to be more ideas about the best way of progressingsafeguarding the human rights of people with psychosocial disabilities, I believe that thisreport represents such an outcome that readers will understand the issue of psychosocial 2
  2. 2. disability better and will gain the knowledge that the life of people with psychosocialdisabilities needs no replacement but support instead and that it should be provided now!It has been a great privilege for me to chair this exercise, and I look forward to seeing ourrecommendations being considered in various programs.BADEGE SamDirector NOUSPR 3
  3. 3. CONTENTS:PART 1.........INTRODUCTIONPART 2.........WHAT IS PSYCHOSOCIAL DISABILITY? - A WIDER PERSPECTIVEPART 3.........METHODOLOGY, FRAMEWORK, DESIGN AND SCOPE OF THIS REPORTPART 4........THE INDIVIDUAL INTERVIEWSPART 5.....’OUR OWN VOICE’ – FOCUS GROUP TESTIMONIESPART 6......OTHER ORGANISATIONS’ PERSPECTIVESPART 7......COMMENTS/RECOMMENDATIONSPART 8……CONCLUSIONABBREVIATIONSNOUSPR:: National Organisation of Users and Survivors of Psychiatry in RwandaVSO ; Volontary Service OverseasOSF : Open Society FoundationCRPD : Convention on the Rights of Persons with DisabilitiesNCPD : National Council of Persons with DisabilitiesADD :Ask : Action for Street KidsDPOs : Disable Persons Organisations 4
  4. 4. P ART 1: INTRODUCTION (NOUSPR) established in 2007 by a group of people with psychosocial ‘Persons with disabilities disability as a member’s organisation represent 15% of the world’s has the following Vision and Mission.population and many experiencediscrimination, exclusion and live in VISION:poverty, with restricted access to basic A world in which all people withgoods and services. With a view to psychosocial disability are treated withaddressing the discrimination and the respect and dignity that enablessocial exclusion facing persons withdisabilities, the United Nations adopted them to enjoy their human rights in allin 2006 the Convention on the Rights aspects of their lives.of Persons with Disabilities (The MISSION:Convention or CRPD) and its OptionalProtocol. The Convention sets forth To advocate for and with people withminimum legal standards to protect psychosocial disabilities and to provideagainst discrimination and to promote a platform for a unified andequality for persons with disabilities in empowered voice that is able toall spheres of life - political, social, achieve the provision of necessaryeconomic, cultural and civil. The services and opportunities to haveOptional Protocol provides a means for their interests and human rights fullyindividuals and groups to seek redress promoted and protected.when these standards are not met andfor an independent committee of NOUSPR board members have, sinceexperts to undertake investigations the inception of the organisation, hadinto serious breaches of disability anecdotal evidence through individualrights set forth in the Convention.’ stories from members about the(Extract from Office of the High difficulties they face on a daily basisCommissioner for Human Rights draft but until this report had not been ablelegislation handbook) to gather the information together to support an advocacy campaign toRwanda is a signatory to both The address the issues. This report, usingConvention and The Optional Protocol the framework of The Convention onand can be justifiably proud that it was the Rights of Persons with Disabilityone of the first countries to sign up to (CRPD) for the design of an interviewboth. Rwanda also has a Constitution schedule, has tested out what theand disability legislation in place to board of NOUSPR knew, felt andprotect the rights of people with thought about the problems theirdisabilities (Law No 01/2007of members face.20/01/2007 Relating To the Protectionof Disabled Persons in General). The NOUSPR members have allpurpose of this report is to test whether experienced some mental illnessor not the reality for Rwandan People ranging from mild depression to verywith Psychosocial Disability in serious disorders such as Bi- Polareveryday life matches the disorder and Schizophrenia. Many ofrequirements and expectations of The the illnesses were caused by or aroseConvention, The Protocol and national during the genocide of 1994.legislation. The Users and Survivors movement isThe National Organisation of Users worldwide and people withand Survivors of Psychiatry in Rwanda psychosocial disability are said to be 5
  5. 5. ‘Users’ if they have experienced difficult and if the fear of socialmental illness and are still undergoing disapproval delays the diagnosis thenmedical treatment or are on a stable the treatment may be less effective.management programme. Those that The strain of carrying the stigma ofhave overcome their illness and come mental illness often results in otherout the other side of the services being medical complaints and ultimatelyable to manage their condition are said even in suicide.to be ‘Survivors’ of psychiatry.Whether or not they are ‘Users’ or The view that Mental Disorder is the‘Survivors’, everybody that has fault of the individual is widely held andexperienced mental disorder faces even well educated people can beprejudice, stigma, discrimination and dismissive and insulting and thisoften abuse. This negative social increases the reluctance of people toattitude is the basis of why the term come forward and ask for help thuspsychosocial disability is used. making diagnosis and treatment more difficult.Mental Disorder (Mental Illness) showsitself in many ways but is usually The lack of understanding stretches toaccompanied by erratic thoughts, the family and community as wellactions and emotions but the culture which leads to being made fun of,in Rwanda along with medical training shunned, blamed and criticized forseparates the issues of the mind and being sick.body. The reality, however, is thatchemical activity in the brain and Mental illness is still widelygenetic factors can play a big part in misunderstood and stigmatized inMental Disorder. Mental Disorder can Rwanda. In many cases, thesebe treated with medication, alternative disorders are neither diagnosed northerapies and this treatment coupled treated despite the sufferers seekingwith family and community support can medical attention repeatedly forbe very effective. various symptoms. Many end up overusing the medical system withMental Disorder is generally seen by repeated treatment for typhoid,Rwandan society as the fault of the malaria, headaches, insomnia, chestindividual losing control and not as an problems, gastro-intestinal conditions,illness that can affect anyone of us. backache and many other symptomsThis attitude can go as far as calling that mask the mental illness.people ‘mad’ and even thinking theyare possessed by evil spirits that can The outcome of mental disorders isbe exorcised. good when treatment is started early, so many of these conditions progressThe outcome of these attitudes is that to critical stages and have poorerMental Disorder is not viewed as an outcomes due to the delay in seekingillness that can be treated but more as treatment.an affliction that is the fault andresponsibility of the individual. Mental Illnesses, as opposed to intellectual disabilities which in mostThis view that it is the individual’s fault cases are irreversible and suffererscan mean that people with Mental need permanent support to cope withDisorder try to hide their illness or to life, affect previously healthy peoplesuffer in silence. Diagnosis can be and are largely treatable. In spite of 6
  6. 6. their illness, persons with mental  High levels of ignorance existillness can go on to live productive within familieslives if they can get proper treatmentand management.  There is a lack of recognition of the ranges of experiencesWhat NOUSPR knows: between men and women  That action should not be based  There is a disability law in on the government’s figures – Rwanda that protects the rights we need to think about of people with disability as well NOUSPR’s evidence and data as a commitment by the Government to the CRPD and its protocol What NOUSPR feels:  The category of psychosocial  Psychosocial disability is not disability is not separately generally understood defined in the legislation  The social model of psychosocial disability is not  It is estimated that 28% of the recognised population of Rwanda has a form of psychosocial disability  PWPSD do not know their (based on a national survey and rights compares with the World Health Organisation‘s estimate that 25% of the world’s population What NOUSPR thinks: will at some point in their lives suffer from mental disorder).  That PWPSD should be consulted on services and  There is no gender breakdown treatment of sufferers  That the recognition of the  People in Rwanda diagnosed Human Rights of people with with ‘Mental Disorder’ by a Psychosocial Disability is ‘Certified Doctor’ are barred NOUSPR’s most important from parts of the electoral priority processes  Without including PWPSD there will not be 100% development  There are low levels of with respect to the Economic awareness in general Development and Poverty Reduction Strategy (EDPRS)  Policy makers don’t understand the (psycho)social model  Something should be done now  PWPSD know what is right for themThis report is a collation of the experiences of 200 people with psychosocial disabilityin their everyday lives and a collection of the views of 12 representatives from otherorganizations 7
  7. 7.  Every User/Survivor shall be free from any and all humanP ART 2: rights abuses – no user/survivor WHAT IS PSYCHOSOCIAL shall be subjected to any DISABILITY? – A WIDER physical, sexual or emotionalPERSPECTIVE: abuseThe introduction to this report  Every User/Survivor shall beexplained an overview of what free from all forms ofNOUSPR understands Psychosocial discrimination – noDisability to be in Rwanda. It is worth user/survivor shall be subject toconsidering, however, a wider view of housing, employment,Psychosocial Disability in order to put economic, educational, racial orthis report in a wider international and cultural discriminationnational context.  Every User/Survivor shall beThere is no agreed definition of granted self determination andpsychosocial disability and indeed the right to make informedthose people dedicated to a medical choices – no user/survivor shallmodel of mental illness may well be denied the right to makedispute that psychosocial disability educated decisions affectingexists at all. NOUSPR believes in the their lives including full informedreality of psychosocial disability as participation and full informedespoused by the World Network of consent in all mental healthUsers and Survivors of Psychiatry ‘treatment’ matters; additionally,(WNUSP) and by The Pan African users/survivors shall have theNetwork of Users and Survivors of opportunity to fully participate inPsychiatry (PANSUP). NOUSPR is a the planning, policymember of both organizations. development, evaluation and research of mental healthWNUSP established 32 guiding servicesprinciples at a general meeting of theirWorld Conference and General  Every User/Survivor shall beAssembly in Kampala, Uganda in granted self determination andMarch 2009, to describe their the right to make informedapproach to resolving the issues that choices – no user/survivor shallpeople with psychosocial disability be denied the right to makeface and in doing so inferred what educated decisions affectingpsychosocial disability is without their lives including full informedcoming up with an agreed definition. participation and full informedEven within the disability movement consent in all mental healththere is no common understanding ‘treatment’ matters; additionally,through a definition. The following are users/survivors shall have thesome of the principles agreed and all opportunity to fully participate in32 principles can be accessed on the planning, policywww.wnusp.net development, evaluation and research of mental health  Every User/Survivor shall be services treated with the same basic respect and dignity afforded to  Every User/Survivor shall be all persons granted full legal and political 8
  8. 8. civil rights – no user/survivor ‘The purpose of the present shall be denied the right to Convention is to promote, protect and participate fully in society, ensure the full and equal enjoyment of including the right to participate all human rights and fundamental in political processes, practice freedoms by all persons with one’s religion, free speech and disabilities, and to promote respect for to petition their governments their inherent dignity.  Every User/Survivor shall have Persons with disabilities include those the right to refuse any and all who have long-term physical, mental, ‘treatments or procedures’ no intellectual or sensory impairments user/survivor shall be subjected which in interaction with various or coerced or forced into barriers may hinder their full and psychosurgery, sterilisation, effective participation in society on an over-medication, psychiatric equal basis with others.’ drugging, chemical restraints, physical restraints, insulin This article in its definition of persons shock, electro shock or inpatient with disabilities includes those who or outpatient commitment have Mental Impairments but does notThese principles whilst indicating an specifically refer to those people with aapproach that is taken by users and Psychosocial Disability. It also includessurvivors organisations worldwide, do people with Intellectual Impairment butnot necessarily help the general it does not go on to define what thatunderstanding and awareness of the may be. Intellectual Impairment coversdisability and in order to do this it is a wide range of Cognitive Impairmentsperhaps helpful to look at the concepts such as Down’s syndrome and otherof Mental Disorder (Mental Illness and forms of Intellectual or LearningMental Impairment) and Mental Health Disability. This is self -evidentlyas described in the CRPD and by the laudable but does not help whenWorld Health Organisation (WHO) and writing legislation or in the planningthen put those alongside the and delivery of services as, on manyperspective of Psychosocial Disability occasions, the difference between aas viewed by the Users and Survivors Mental Illness originating disability andof Psychiatry Organisations. a Cognitive Disability and the need for a different approach to services is notIn looking at the concepts and the fully understood by planners andlanguage used to describe a condition legislators let alone by the public inin the CRPD, WHO and Users and general.Survivors of Psychiatry Organisationsit will be seen that the principles of The Users and Survivors movementequality for all people with disability believes that Article 1 of the CRPDare consistent but the actual nature of clearly covers Psychosocial Disorderthe condition attached to the language but the movement does not see people with Cognitive Impairments asused can be interpreted differently. automatically living with PsychosocialFor example: Disability as well. People with Cognitive Impairments can and do alsoArticle 1 (CRPD) on occasions have a PsychosocialPurpose Disorder, like any other part of the population but that would arise from a 9
  9. 9. superimposed Mental Health issues on conflict or any other reasons whichtop of their Cognitive Impairment. may cause disability.There is a complexity here that leadsto great difficulty for those trying to Codes and Laws of Rwanda - Ministryplan and deliver appropriate services. of JusticeThis complexity makes it even more http://www.amategeko.net/display_rubrdifficult to raise awareness of the ique.php?ActDo=all&...general public and to sensitise them to An order of the Minister in charge ofthe needs of people with Psychosocial Health shall determine modalities ofDisorder and people with Cognitive how disabled persons are put in basicImpairment as well. categories according to their disabilities in order to help various organs to guarantee them specialThe Rwandan Law No 01/2007 of rights they require.20/01/2007 – Relating to theProtection of Disabled Persons in (The Ministerial Order N° 20/18 ofgeneral is even less helpful on the 27/7/2009 defines mentallyquestion of Psychosocial Disability. In disabled people only as recognisedfact it is not referred to at all either disability category among thethrough reference to Mental Disorder ‘other’ disability category in(Mental Illness) in the main text of the Rwanda.)legislation or the five categoriesdefined as disabled in the Ministerial The WHO’s description of MentalOrder. The legislation states: Disorder (Mental Illness) and Mental Health may offer an easier way toArticle: 1(of the Rwandan Law on understand Psychosocial Disability.Disability) ‘‘Mental disorders comprise aThis law protects disabled persons in broad range of problems, withgeneral. different symptoms. They areWithout prejudice to provisions of this generally characterized by somelaw, there may be instituted particular combination of abnormal thoughts,laws protecting persons who are emotions, behaviour anddisabled due to various circumstances. relationships with others.’’ (World Health Organisation)Article: 2(of the Rwandan Law onDisability)In this law, disability shall mean the Some examples of Mental Disordercondition of a person’s impairment of (Mental Illness):health ability he or she should have  Schizophreniabeen in possession, and consequentlyleading to deficiency compared to  Depressionothers.  Disorders due to drug abuseIn this law, a disabled person is anyindividual who was born without  Bi – Polar Disorder ( maniccongenital abilities like those of others depression)or one who was deprived of such  Post Traumatic Stress Disorderabilities due to disease, accident, 10
  10. 10.  Eating Disorders (e.g. Anorexia, relevant just as much to Rwanda as bulimia) anywhere else in the world.  Anxiety Disorder ‘’Mental disorders contribute more to disease burden and disability inSome facts about Mental Disorder ( developing countries than any otherMental Illness): category of non-communicable disease, yet only a small minority of  There is no single cause of the people with mental disorders in different types of disorder these countries have access to  All of them can be treated mental health services. The need is high, and care is inadequate,” (Ban  They can be managed, not just Ki – Moon, Secretary General of the in institutions but also in the United Nations October 2009) community The WHO Mental Health definition is  Many conditions can be cured- also relatively straight forward and e.g. Depression and Anxiety certainly assists in understanding the Disorder concept of Psychosocial Disability.  Mental Disorder is not Mental Health is: necessarily constant or permanent "A state of complete physical, mental and social well-being and(The last fact is particularly important not merely the absence of disease.as a Cognitive Impairment is constant It is related to the promotion ofand permanent even though the well-being, the prevention of mentaleffects of that disability can still be disorders, and the treatment andreduced with support from others) rehabilitation of people affected by mental disorders.’’. (World HealthWho can suffer from Mental Disorder Organisation)(Mental Illness)? Therefore Psychosocial Disability can  Anyone and everyone be viewed in the following way:  It is estimated that one in four  Whereas Mental Disorder is people throughout the world has seen as entirely medical issue, or will suffer from mental Psychosocial Disability takes as disorder in their lifetime (WHO) its starting point the concept of  Mental Disorder (Mental Illness) Mental Health as not just the appears everywhere in the absence of disease but a state world, irrespective of wealth, of complete well being of the ethnicity or religion individualThe importance of the scale and  Psychosocial Disability occursproblem of Mental Disorder (Mental just as much because ofIllness), particularly in developing society’s attitudes to treatmentcountries, has been recognised by the and support of the individual asUnited Nations (UN) in a speech made it does because of the nature ofby Banki-Moon, Secretary General, the Mental Disorder (Illness)UN in 2009 and his comments are itself 11
  11. 11. social rather than a medical model ofThis view of Psychosocial Disability is disability and which require theshared not just by Users and Survivors integration of the fields of mentalOrganisations but also by leading health law, non-discrimination, andacademics and in some countries by legal capacity…… “leading politicians. It is these viewsthat NOUSPR would want to putforward in Rwanda. For example at a This view forms the basis ofrecent International Disability Summer NOUSPR’s view on how to helpSchool (Gallway June2012) people Psychosocial Disability andconference in Ireland, The President of it is with this view in mind that weThe Irish Republic, Michael D. Higgins collected the information in thissaid in his opening address report. “ … I will seek to achieve an inclusivecitizenship where every citizenparticipates and everyone is treatedwith respect … P ART 3: METHODOLOGY,…..In fact, it has been the case that FRAMEWORK, DESIGNuntil relatively recently persons who AND SCOPE OF THISexperienced mental illness werelargely invisible within our society – REPORT:sometimes denied their basic human We do not claim that this report is arights and warehoused in institutions scientific view or measurement of thedisconnected from the community – experiences of people withpushed to the margins, the periphery Psychosocial Disability in Rwanda.of normal everyday life…. Rather it is a collection of the stories of... We must seek to move to a culture the personal experiences of thoseof assisted citizenship, where a people. The way in which themember of society with a mental information has been collected isdisability may receive appropriate based in Qualitative Researchsupport in making decisions without Methodology.relinquishing their right to actually  Qualitative research aims tomake that decision themselves. In this provide an in-depthway we can ensure that freedom of understanding of the socialchoice is not withheld from those with world of research participantsmental disabilities and that society through learning about theirrelates to them in a way that does not social and materialdiminish their right to exercise legal circumstances, experiences,capacity…. perspectives and histories.... By depriving citizens of the right to (Ritchie and Lewis, Qualitativerepresent themselves and to make Research Practice 2003)important decisions regarding their  Qualitative research is notlifestyle and their medical care we fail based on statisticallyto promote their inclusion in society representative samples and soand we contradict the principles to does not produce statisticallywhich we should aspire; principles significant findings.which espouse the upholding of a 12
  12. 12.  Participants are selected in a  16 NOUSPR members were non-random way, according to trained in research characteristics of most interest methods/interviewing to the particular study. In this purposive sampling, the criteria  An interview schedule was used to select participants are agreed at two meetings with more important than the number members of always based on a small NOUSPR/Researchers based number of people taking part. on the areas agreed from the CRPD  Qualitative research is almost always based on a small number of cases. In reporting, qualitative research does not use numbers; any experience or perspective has value regardless of how often or seldom has it appeared.FRAMEWORK FOR THERESEARCH: Training of researchersThe framework for the research is  Particular attention was given tobased on the United Nations Gender and other DisabilityConvention on the Rights of Persons issues with each set ofwith a Disability and the areas covered questions containing a sub setwere: asking specifically about the effect on the respondents of  The Legal/Justice System gender and/or additional  Accommodation disability had had on their experiences  Education  50 individual interviews were  Health Care conducted with people with psychosocial disability  Employment  12 interviews/written responses  Participating in the public and were carried out with other cultural life and the recreation, stakeholders leisure and sporting opportunities in the community  Five Focus/Enquiry groups were held in Gisenyi, Nyagatare, Gitwe and Kigali (2)DESIGN AND SCOPE OF THE  The same interview scheduleRESEARCH: was used for a basis of discussion in the focus groups  A Literature Study was carried and the responses recorded out (150 people attended in all – 50% women and 50% men) 13
  13. 13. P ART 4: THE INDIVIDUAL 5. Subject to the provisions of this INTERVIEWS: article, States Parties shall take all appropriate and effective measures to ensure the equal right of persons with disabilities to own or inheritTHE LEGAL/JUSTICE SYSTEM: property, to control their own financial affairs and to have equal Article 12 (CRPD) access to bank loans, mortgages Equal recognition before the law and other forms of financial credit, and shall ensure that persons with 1. States Parties reaffirm that disabilities are not arbitrarily persons with disabilities have the deprived of their property right to recognition everywhere as persons before the law. Rwandan Law on Disability (article 3) states on the same subject: 2. States Parties shall recognize that persons with disabilities enjoy Every disabled person shall be legal capacity on an equal basis entitled to equal rights with others with others in all aspects of life. persons before the law. He or she shall be respected and be entitled 3. States Parties shall take to human dignity. appropriate measures to provide access by persons with disabilities Article 13 (CRPD) to the support they may require in Access to justice exercising their legal capacity. 1. States Parties shall ensure effective 4. States Parties shall ensure that access to justice for persons with all measures that relate to the disabilities on an equal basis with exercise of legal capacity provide others, including through the provision for appropriate and effective of procedural and age-appropriate safeguards to prevent abuse in accommodations, in order to facilitate accordance with international their effective role as direct and human rights law. Such safeguards indirect participants, including as shall ensure that measures relating witnesses, in all legal proceedings, to the exercise of legal capacity including at investigative and other respect the rights, will and preliminary stages. preferences of the person, are free of conflict of interest and undue 2. In order to help to ensure effective influence, are proportional and access to justice for persons with tailored to the persons disabilities, States Parties shall circumstances, apply for the promote appropriate training for those shortest time possible and are working in the field of administration of subject to regular review by a justice, including police and prison competent, independent and staff. impartial authority or judicial body. The safeguards shall be Rwandan Law on Disability on this proportional to the degree to which subject states in Article 8 that: such measures affect the persons rights and interests. A disabled person shall have the right to legal representation like any other 14
  14. 14. person in courts of law as determined when such a case is betweenby law. someone with mental illness and another “normal” person, it is alwaysThe State shall determine the decided in the favour of the latter.modalities of providing legal aid to the Take for example a case which I evenneedy disabled persons who are not raised to the president of the republicable to get legal representation.1 during his last visit here in 2008, I told him that there is a family land that I amVarious organs shall facilitate the legally entitled to but some otherdisabled persons in acquisition of the people had grabbed it forcefully; uponrequired services at any time it is hearing that the president instructedconsidered necessary. the local leaders to solve my problem, but up to now I have not got my land. And the only excuse they give to themselves and to others who question about that unfairness is that I RESPONSES BY INDIVIDUALS ON am a mad person!’ (Male – age 36, THE SUBJECT OF LAW AND married unemployed) JUSTICE: ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞‘The justice system is not only ‘Most leaders equate mental illnesssupposed to give us freedom of with uselessness and when you areexpression it also has the looked at in that way, you have noresponsibility to put laws in place that right whatsoever. I will give you 2protect our entire human rights, but if examples beginning with my ownsuch laws are not there e.g. the right to experience, when my father’s propertyvote and be voted for, where does it was being shared I was not consideredleave us? It is only an organization like as his child. I had to battle it out inCARITAS that has been able to build courts but in vain. The secondsome houses for People with example is of another lady who afterPsychosocial disabilities, but why getting mental illness was chaseddoesn’t our government include us in away by her husband; her brotherseconomic development initiatives that also never wanted her in their families.are there for other citizens? Why can’t She became homeless despite the factwe be given medical insurance cards that she had her inheritance (a bigsince we are the ones who are most chunk of land) which her brothers wereeffected and constantly ill?’ (Male – farming freely. She was so destitute soage 51, married with six children, that at one time when she was a sleepunemployed) in the bushes at night dogs came and∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ started eating her child. If it was not for‘I think the laws and in fact all the legal the intervention of passersby the childsystem exists only for the people other would have been eaten by the dogsthan us who have mental illness. Even completely. The authorities were notthe easiest case one could think of, ignorant of the unfairness of her husband and her own brothers. But what did they do? Nothing! It is only a1 Codes and Laws of Rwanda - good hearted doctor who, afterMinistry of Justice learning about her sad story, took herhttp://www.amategeko.net/display_rubr to Ndera hospital and took charge ofique.php?ActDo=all&... her treatment and she has now recovered. There is no justice for 15
  15. 15. mentally ill people in the current legal ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞system.’ (Female – age 49, married ‘In so far as I am concerned there is nowith five children, unemployed) legal system or justice to protect me, if∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ they do exist they are for the normal‘I don’t know anything about the legal people. I get harassed and beatensystem; neither do I know any rights when I am just out of my family and Ifor people like myself. What right can get no one to report to. I am shouted atyou have when you are socially and teased even by the local leadersrejected?’ (Female – age 51, widow, themselves.’ ((Male –age 24, lives withlives with her sister, her own two parents and siblings, unemployed)children and her sister’s four children, ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞unemployed) ‘I am not allowed to vote or be voted∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ for, I don’t have rights to my property,‘I don’t know any rights that protect me none listens to my point of view be it inneither do I know any laws.’ (Female – meetings or other gatherings. I am notage 43, married with three children, in any way treated with respect andunemployed) the legal system has not come to my∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ rescue.’ (Female – age 35, single,‘I once bought a forest with someone lives with children, unemployed)who promised to give me a legal ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞contract of sale but after a time he ‘Police has rounded me up manystarted denying that anything exists times, sometimes I got beaten andbetween him and I this was after I had taken to prison but I could later bepaid and we had had an agreement on released.’(Male – age 24, lives in aa small piece of paper awaiting to go charitable institution, unemployed)to the authorities and pay the ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞sale/purchase tax. When I called for ‘The problems are that I am notthe attention of authorities, every one listened to. I tried to go back where Ireferred to my “madness”. And that was born to claim my parent’s propertywas it. I lost.’ (Female –age 52, but I was dismissed and not listened tomarried with children, unemployed) by authorities.’(Female – age 24,∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ single, one child, unemployed) ‘I can’t be accepted (for a contract). ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞Period. Even in my family can’t allow ‘Legally I am not protected forme to enter into a contract unless I am whenever I have problem withgiven a representative. For instance I someone none believes that the otherwent to my family ( birth place) to claim person has wronged me. They alwaysmy inheritance but I was denied maintain that I am mad and because ofpossession of the plot that my parents that I am the trouble causer.’ (Male –had left for me on the pretext that I am age 52, married, four children,mentally unfit. (Female – age 44, unemployed)widow, four children, unemployed) ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ ‘Whenever I get any problem with‘There is no justice for people like me. someone I am not listened to andI am not in any way respected as a therefore I am not protected by the lawhuman being. I am just called mad and neither am I considered by the legalit makes me feel more mad.’ (Male – system in place.’ (Female – age 28,age 45, single, homeless, married, one child, unemployed)unemployed) ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ 16
  16. 16. ‘The legal system does not care about community, with choices equal topeople with psychosocial disability. I others, and shall take effective andwish you would make advocacy about appropriate measures to facilitate fullthe plight of people with psychosocial enjoyment by persons with disabilitiesdisability so that the society becomes of this right and their full inclusion andaware of our rights. For even us participation in the community,ourselves do not know the laws that including by ensuring that:are supposed to protect us.’ (Female –age 42, single, lives with children, (a) Persons with disabilities have theunemployed) opportunity to choose their place of∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ residence and where and with whom‘I don’t know anything about justice; they live on an equal basis with othersthey take me as a mad old lady even and are not obliged to live in awhen I want justice say for example if particular living arrangement;a neighbour grazes his animals in mygardens I don’t get necessary (b) Persons with disabilities haveattention. They maintain that I am access to a range of in- residential andmad.’ (Female – age 66, widow, lives other community support services,with orphaned grand-child, including personal assistanceunemployed) necessary to support living and∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ inclusion in the community, and to prevent isolation or segregation from the community; (c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs. There is no direct comparison to this article the Rwandan Law on Disability: RESPONSES BY INDIVIDUALS ON THE SUBJECT OF ACCOMMODATION: Focus Group participants ‘I have problems finding where to live; everyone calls me a mad woman. It is not easy for me to get a house to rent even when I have money. SomeACCOMMODATION: landlords chase me out of their houses when they find out that I haveArticle 19 (CRPD) psychosocial disability even myLiving independently and being husband abandons me when I get intoincluded in the community mental health crisis. No one visits me and none welcomes me in theirStates Parties to this Convention families. However, when I am stable Irecognize the equal right of all persons try to participate in all communitywith disabilities to live in the activities including UMUGANDA 17
  17. 17. (social community work) despite the always care about me when I am in anegative attitude. (Female – age 35, crisis. With our neighbours, it is amarried, one child, lives with three different case, those who knowrelatives) (because I try to hide it) isolate me,∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ even those who are supposed to be‘I live with family members. But at this my friends- the age mates, don’tage, I wish I had my own house, consider my existence when they havehowever, given the attitude of people parties they don’t invite me. I am notaround me I can’t even think of looking informed of community meetings andfor one.’(Female –age 28, single, two most times I don’t participate. Theychildren, lives with siblings, take (it that you) are a useless person.’unemployed) (Female – age 28, single, lives with∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ siblings, employed)‘It was not easy for me. After the ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞genocide our house had been ‘I live with my Dad and wherever hedestroyed. When I returned to my shifts to I go with him. Neighbours areplace no one wanted to receive me not good to me they don’t welcome meback, I stayed at a distant relative’s in their families, even my step motherplace but she was also not comfortable does not like me she always shouts atwith my disability. I tried to get a small me. It is only my brother whohouse to rent but none could allow me sympathizes with me. He looks for myin his house. They said that I won’t pay shoes and cleans them when I amthem emphasizing on my “madness’’ going to school in the morning andbut because I have my own land the finds some skin lotion for me. My Dadgovernment later assisted me to get provides money for my medicine andwhere to live’ (Female –age 66, widow, he also pays for my hair cutting. Ilives with grandchild, unemployed) notice that whether in the family or with∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ neighbours I am not liked like other‘Because this is not my place of birth, people are. And know it is because Ithey call me derogatory names and am sick. This disturbs me so much sothey don’t welcome me in their homes. that I wish to die, may be then I mayMy children are harassed and for any have some rest from the negativeslight mistake say if my child fights attitudes that I experience.’ (Male –with theirs I get kicked out of their age unknown, single, lives with family,house and it takes me long to get unemployed)another house to live in for they all say ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞that I am mad. The community attitude ‘I never experienced any problem ofis so sickening as no one gives you a getting where we are living now, it isrespect as a mother or as a fellow only our neighbours who are not happyhuman being. Neighbours and the with us. They don’t say it loud but welandlords are all alike they share the can feel it.’ (Male – age 40, married,same understanding about me “the three children, unemployed)mad woman”.’ (Female – age 44, ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞widow, six children, unemployed) ‘I started living in this place since∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ 1968, it is only of recent that the‘I have had no problem with authority requested me that I shouldaccommodation because I live with my shift and join others in communitybrothers and sisters in our parent’s villages (UMUDUGUDU) but I have nohouse. They have a good financial capacity to do so.understanding of my illness and they 18
  18. 18. My neighbours don’t respect me at all ‘It was not easy for me. After my houseeven those who pretend to be friendly was sold, I could not easily get wherecan’t invite you in their parties.’ to settle, they chased me from house(Female – age 60, single, three to house even without a warning. I canchildren, unemployed) remember my wife and I once paid a∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ man 3 years rent in advance but after ‘I started living where I live in 1996. It one year he tried to chase us from hisis my brother’s house house and when we resisted heI have no problem with my brother. I reimbursed our money.’ (Male – agepay his rent timely.’ (Male – age 51, 52, married, six children, unemployed)married, four children, unemployed ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞with own piece of land) ‘Because mental illness is associated∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ with evil spirits most landlords see‘It is normally not easy for someone to renting their houses to people withrent out his/her house to a “mad” psychosocial disabilities as giving evilperson. At times you have to be spirits a sanctuary in their homes. So,careful when you are looking for a their either hike prices or refuse to renthouse and make sure that none out their houses to us.’ (Female – agedetects your mental status, or if you 42, married, five children, unemployed)have someone “normal” to get it for ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞you, much better.’ (Male – age 42, ‘My husband covers me in suchmarried, unemployed) matters, He is the one who rents the ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ house we live in. Our previous‘People don’t like being with me. landlords were very harsh and whenBefore I came back here on our family they discovered that I was mentally ill,property which I inherited from my they chased us out of the house andparents, I was constantly moving from spread the roomer to other landlords,place to place looking for My husband had to go far off andaccommodation; once I got one I looked for a house where they didn’twould be chased before long. know me.’Landlords used give me more ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞headache than my illness, if I wouldmiss to pay my rent by a day or two,they would say that I will not pay them EDUCATION:and therefore chase me a way.’ (Male– age 56, married, six children, Article 24 (CRPD)unemployed) Education∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞‘I got this illness in 2009, I had already 1. States Parties recognize the right ofa house to live in and a cultivatable persons with disabilities to education.land, hover, even though we are in a With a view to realizing this rightvillage, other people with mental without discrimination and on the basisillness that I know do not get of equal opportunity, States Partiesaccommodation easily. Most of their shall ensure an inclusive educationbig problem is poorness and again the system at all levels and life longattitudes.’ (Male – age 49, married, six learning directed to:children, own land)∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ (a) The full development of human potential and sense of dignity and self- worth, and the strengthening of 19
  19. 19. respect for human rights, fundamental this end, States Parties shall takefreedoms and human diversity; appropriate measures, including:(b) The development by persons with (a) Facilitating the learning of Braille,disabilities of their personality, talents alternative script, augmentative andand creativity, as well as their mental alternative modes, means and formatsand physical abilities, to their fullest of communication and orientation andpotential; mobility skills, and facilitating peer support and mentoring;(c) Enabling persons with disabilities toparticipate effectively in a free society. (b) Facilitating the learning of sign language and the promotion of the2. In realizing this right, States Parties linguistic identity of the deafshall ensure that: community;(a) Persons with disabilities are not (c) Ensuring that the education ofexcluded from the general education persons, and in particular children,system on the basis of disability, and who are blind, deaf or deafblind, isthat children with disabilities are not delivered in the most appropriateexcluded from free and compulsory languages and modes and means ofprimary education, or from secondary communication for the individual, andeducation, on the basis of disability; in environments which maximize academic and social development.(b) Persons with disabilities canaccess an inclusive, quality and free 4. In order to help ensure theprimary education and secondary realization of this right, States Partieseducation on an equal basis with shall take appropriate measures toothers in the communities in which employ teachers, including teachersthey live; with disabilities, who are qualified in sign language and/or Braille, and to(c) Reasonable accommodation of the train professionals and staff who workindividuals requirements is provided; at all levels of education. Such training shall incorporate disability awareness(d) Persons with disabilities receive the and the use of appropriatesupport required, within the general augmentative and alternative modes,education system, to facilitate their means and formats of communication,effective education; educational techniques and materials to support persons with disabilities.(e) Effective individualized supportmeasures are provided in 5. States Parties shall ensure thatenvironments that maximize academic persons with disabilities are able toand social development, consistent access general tertiary education,with the goal of full inclusion. vocational training, adult education and lifelong learning without3. States Parties shall enable persons discrimination and on an equal basiswith disabilities to learn life and social with others. To this end, States Partiesdevelopment skills to facilitate their full shall ensure that reasonableand equal participation in education accommodation is provided to personsand as members of the community. To with disabilities. 20
  20. 20. There are three articles in the some teachers started calling me aRwandan Law on Disability relating to mad girl and this got me disorientedEducation: such that I lost interest in whatever the teachers were teaching . And when IArticle: 11 started using mental drugs and because of my absence from schoolA disabled person has the right to while in a crisis, my school marks fellappropriate education in respect of the remarkably- this together with thenature of his or her disability. attitudes from teachers and students made me quit school.’ (Female – ageThe Government or centres which 28, single, lives with siblings,cater for disabled persons who are not unemployed)able to study with others, shall providewith them modalities to study in a ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞specialised school and shall have ‘In education, it is not easy especiallyqualified and trained teachers and when I get sick- this has made meappropriate equipment. repeat the same class every other year. I have got so disappointed soThe Minister in charge of Education that I don’t see a good future beforeshall, basing on basic categories of me. The only good thing is my gooddisability determined by the Minister in teacher who comforts me andcharge of Health, determine modalities encourages me to continue- But I am aof facilitating the needy disabled slow learner.persons in ordinary schools and in With an exception of my inability I don’tspecialised schools in case of failure to face any other problem. Fellowstudy with others. students here don’t harass me and my teachers are good to me. I have neverArticle: 12 sensed any bad attitude towards me while here at school.’ (Male – ageA pupil or a student with disabilities unknown, lives with mother, father andthat do not enable him or her to sit siblings, unemployed)exams with fellow schoolmates or inthe same manner as others is entitled ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞to the right of sitting for exams in a ‘I told you and as you can hear mespecial manner. speaking, I am almost dumb. Some teachers, who are not compassionateArticle: 13 towards me, don’t make an effort to listen to my questions as a result theyThe Minister in charge of education don’t explain to me. My dumbness isshall determine modalities of an injury to the wound.’ (Male – agefacilitating the needy disabled persons 17, lives with mother and siblings, atin pursuing education. school) ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ RESPONSES FROM INDIVIDUALS ‘I like schooling, even now if I got a theON THE SUBJECT OF EDUCATION: school environment needs to be‘When I was at school, students used without harassment of people withto isolate me. I never had friends disabilities and the teachers need tohowever much I tried to look for some. be understanding. I had studied up toThey could call me names and It’s P.6 and I had 3 years in a plumbingwhere I was named a mad girl- even 21
  21. 21. course.’ (Male – age 40, married, three ‘I stopped studies when I was in seniorchildren, unemployed) two, but if I can get a chance I can go∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ back to school, I once went to Rwamagana in a school of people with‘I studied up to Primary 3 when I psychosocial disability and participatedstarted to be attacked by epilepsy. My in a classroom for a while, I found outillness and stigma that I started that I got good marks. My problem isexperiencing while at school made me only lack of financial capacitydull I could not learn anything however otherwise, I may go back to school.’much I tried to be attentive.’ (Female – (Male – age 52, six children,age 60, lives with one child and two unemployed)grandchildren, works own land) ‘I never went to school’ (Female – age∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ 39, married, five children, unemployed)‘I never went to school.’ (Male – age ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞51, married, four children, works ownland) ‘My illness came after 1994 genocide I∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ had left school long ago.’(Female – age 52, married unemployed)‘I finished my primary level but ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞because of my drug addiction I nevercontinued I decided join street life ‘I finished primary level education, butwhere I could be able to get drugs.’ because of my epilepsy I never(Male – age 27, lives in an institution, managed to go further than that.’ (Maleunemployed) – age 27, single, lives with mother and∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ seven siblings, unemployed) ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞‘I stopped my studies in primary 2 dueto lack of school fees and other school ‘I finished primary school and I didnecessities’ (Female age 19, single, no construction technical training for threefamily, lives with friend, employed) month.’ (Male – age 52, married, three∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ children, unemployed) ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞‘The attitudes about people withmental illness are everywhere even in ‘I studied up to primary six and by thenschools teachers and fellow students I had not had this illness.’ (Female –tease and call you names whenever age 33, married, three children,they find out that one has got mental unemployed)illness and that is precisely what ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞stopped me from continuing myeducation.’ (Male – age 36, married ‘When I started getting sick I was inunemployed) Primary six but due to the students and teachers attitudes towards me I‘I studied long before I got this problem could not continue. The Head teacherof illness, to primary 5.’ (Male, married, told me not to go back to school until Isix children, unemployed) would get healed. I got more∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ depressed when I got chased out of the school.’ (Female –age 27, single, ‘I never went to school.’ (Male - age lives with mother, unemployed)49, married, six children, unemployed) ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ 22
  22. 22. HEALTH: standards for public and private health care;Article 25 (CRPD)Health (e) Prohibit discrimination against persons with disabilities in theStates Parties recognize that persons provision of health insurance, and lifewith disabilities have the right to the insurance where such insurance isenjoyment of the highest attainable permitted by national law, which shallstandard of health without be provided in a fair and reasonablediscrimination on the basis of disability. manner;States Parties shall take allappropriate measures to ensure (f) Prevent discriminatory denial ofaccess for persons with disabilities to health care or health services or foodhealth services that are gender- and fluids on the basis of disability.sensitive, including health-relatedrehabilitation. In particular, States There are three articles in theParties shall: Rwandan Law on Disability relating to Health:(a) Provide persons with disabilitieswith the same range, quality and Article: 14standard of free or affordable healthcare and programmes as provided to The Government shall facilitate aother persons, including in the area of disabled person in getting medicalsexual and reproductive health and care and prosthesis and orthesispopulation-based public health appliances if required.programmes; Article: 15(b) Provide those health services The Government has an obligation toneeded by persons with disabilities provide medical care to a needyspecifically because of their disabled person and it shall providedisabilities, including early prosthesis and orthesis appliances ifidentification and intervention as required.appropriate, and services designed tominimize and prevent further Article: 16disabilities, including among childrenand older persons; Each centre or association that caters for the disabled persons is obliged to(c) Provide these health services as have a department responsible forclose as possible to peoples own examination of trauma as well ascommunities, including in rural areas; physico-social counselling.(d) Require health professionals toprovide care of the same quality to RESPONSES FROM INDIVIDUALpersons with disabilities as to others, INTERVIEWS ON THE SUBJECT OFincluding on the basis of free and HEALTH:informed consent by, inter alia, raisingawareness of the human rights, ‘I once went to Ndera hospital when Idignity, autonomy and needs of experienced mental crisis but due topersons with disabilities through negative effects of the drugs theytraining and the promulgation of ethical administered to me, I can’t go back for 23
  23. 23. treatment. I rather go for prayers in the with psychosocial disabilities) where Ichurch when my situation deteriorates. was injected with some medicine thatI went by myself because my husband got me sleep. When I woke up the nexthad abandoned me and my day, I was dizzy and foaming, I wasneighbours always call me a mad given some other tablets which got meperson. No one cares about me, even hungry and powerless, I later escapedat the hospital I got neglected until I and since then I have not gone back tostarted shouting louder for help. I was the hospital.’ (Male – age 45, single,then injected with a very strong homeless, unemployed)medicine that made me sleep ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞unconsciously and when I woke up Iwas powerless, foaming and more ‘At present I am stable, but thehungry than ever. From then on I problem is that even when I amfeared going back. I went by myself suffering from other types of illness, Ibecause my husband had abandoned am forced to take mental illness drugs.me and my neighbours always call me I cannot be listened to even when Ia mad person. (Female – age 35 know I am right. It disturbs me a lotyears, married, lives with husband, when my family members tie me upone child and other family members, and take me to the community centreworks as a construction aid when for mental disability treatment evenstable) when I feel I am suffering from another∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ disease.’(Male - age 26, lives with father, mother and seven siblings,‘I am now stable, the only problem that never been employed)I experience is getting medicine when I ‘∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞am under mental crisis, my mentalmedicine is not covered under the I have a healthcare card, unfortunatelypresent health care program ( mittuelle it does not cover the type of medicine Ide santé) if I may constantly get use; and as a result I am most of themedication, I think my situation may time in a mental crisis; my familystabilize permanently.’ (Female – age members at times spend their money57 years, married, lives with husband trying to get my type of medicine andand six children, unemployed) this increases their rage against me∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ saying that I am the source of family problems.’(Female - age 28, single‘It all started when I was about to get parent, two children and lives with fourmarried, It started with a severe siblings, never been employed)headache. My head ached me until I ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞started running around at times crying,my girlfriend chucked me and ‘It is not an easy task gettingeverybody else started saying that I medication, we used to get medicationwas mad. My parents sold the little from Kigali but it is quite far from here,property that I had including my land at times when I am in a crisis, I amand goats trying to get some treatment given only aspirin. The health centrefor me; I first went to local healers but medical attendants don’t care aboutto no avail, as my situation went from me whenever I try to explain to thembad to worse, I was grabbed by that their medicine is not effective. Ineighbours and family members and lost my mental stability because of theput into ropes and taken to Ndera 1994 genocide, sometimes I stabilize(national referral hospital for people but whenever something like seeing 24
  24. 24. someone with scars or during the medicine. I went into immense mentalgenocide commemoration period crisis such that I was taken backoccurs, then my situation deteriorates. forcefully and I was injected with aI am only comforted by being with my medicine that made me unconscious.association members with whom I I hate to remember that experience.share problems. The association These days I am o.k. I no longer getcounsels us and it encourages us to severe headaches on a daily basis, Ishare our challenges. If I try to go to am in a cooperative with some of myKigali to look for proper medicine, it friends who have the same problemcosts me a lot and this leaves me with and by keeping together with mynothing to eat. Again when I am not at friends I have improved.’(Female - agehome my grandchild remains alone he 44, widow, lives with her five childrenworries so much that I might die when and one adopted child, unemployed)I leave him alone.’(Female – age 66, ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞widow, lives with orphaned grandchild,unemployed) ‘My Dad gives me money for∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ medication, the only problem is when I find too many people at the hospital‘Medical personnel around here don’t and I get delayed while waiting for thecare about me when I visit the hospital doctor. Otherwise I don’t experiencefor my illness, they tout that I am mad any other problems at the hospitaland mindless. When I ask for a problem.transfer letter to another hospital, they What pleases me is how I amdon’t give it to me. At times, they may improving because of the medicine Igive me aspirin and tell me that that is get I no longer have serious headacheall. There used to be a project that like it used to be. I am not so o.k. nowpaid for my medication and even that because I still use drugs but I haveof my children. They would pay for my been relieved. And I hope I will gettransport to Kigali when going to the cured.’(Male – age unknown, lives withnational referral hospital of Ndera his father and his father’s wife,where I would be treated but now I student)don’t know where it went. I am poor ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞and I can’t afford to do it by myself. Ihave even failed to raise money to ‘I got mental illness when I was a childpurchase (mittuelle de santé ) a and I am also disabled in a leg, thismedical insurance card. was due to the injections I got when IA certain doctor in Ndera who knew was being treated for my mentalme used to treat me well. He was illness. My 2 sons also have mentalgentle and good to me he would listen illness; the first one is 11 years old andto me and give me some tablets that the second is 9 years old. We go tocalmed me down but since I no longer hospitals for treatment, however, athave means to go to Kigali, I can’t present I don’t have mituelle de santétrace him. In fact his attention and care (a medical insurance card) minewere more of a medicine to me than expired but I will soon pay for itsthe tablets he gave me. renewal. A certain doctor in our local health What is good is that I have improved-centre ignored me when I had visited my life is not like it was when I was stillthe hospital for medication, I quarrelled young; the medicine that I use haswith him but he could not relent until I made me improve a lot. Again theleft and went back home with no 25
  25. 25. current health insurance system has protection from harassment, and themade it easy for me to get medication. redress of grievances;People with mental disabilities are notgiven due attention in the hospitals, (c) Ensure that persons withmost of hospitals and health care disabilities are able to exercise theircentres don’t have mental health labour and trade union rights on anprofessionals and we get lined up with equal basis with others;other people while waiting for a doctoras if we have the same illness.’(Male – (d) Enable persons with disabilities toage 40, married with three children, have effective access to generaloccasionally employed when stable) technical and vocational guidance∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞ programmes, placement services and vocational and continuing training;EMPLOYMENT: (e) Promote employment opportunities and career advancement for personsArticle 27 (CRPD) with disabilities in the labour market,Work and employment as well as assistance in finding, obtaining, maintaining and returning to1. States Parties recognize the right of employment;persons with disabilities to work, on anequal basis with others; this includes (f) Promote opportunities for self-the right to the opportunity to gain a employment, entrepreneurship, theliving by work freely chosen or development of cooperatives andaccepted in a labour market and work starting ones own business;environment that is open, inclusive andaccessible to persons with disabilities. (g) Employ persons with disabilities inStates Parties shall safeguard and the public sector;promote the realization of the right towork, including for those who acquire a (h) Promote the employment ofdisability during the course of persons with disabilities in the privateemployment, by taking appropriate sector through appropriate policies andsteps, including through legislation, to, measures, which may includeinter alia: affirmative action programmes, incentives and other measures;(a) Prohibit discrimination on the basisof disability with regard to all matters (i) Ensure that reasonableconcerning all forms of employment, accommodation is provided to personsincluding conditions of recruitment, with disabilities in the workplace;hiring and employment, continuance ofemployment, career advancement and (j) Promote the acquisition by personssafe and healthy working conditions; with disabilities of work experience in the open labour market;(b) Protect the rights of persons withdisabilities, on an equal basis with (k) Promote vocational andothers, to just and favourable professional rehabilitation, jobconditions of work, including equal retention and return-to-workopportunities and equal remuneration programmes for persons withfor work of equal value, safe and disabilities.healthy working conditions, including 26
  26. 26. 2. States Parties shall ensure that (Male –age 45, single, homeless,persons with disabilities are not held in unemployed)slavery or in servitude, and areprotected, on an equal basis with ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞others, from forced or compulsorylabour. It is not easy to get a job. Looking for a job calls for having a certain level ofThere are three articles in the financial capacity, when you considerRwandan Law on Disability relating to necessities such as transportation,employment: photocopies of one’s documents and the telephone calls one has to make, itArticle: 18 becomes quite difficult. In additionNo discrimination of any form shall be when one has been labelled mad, onesubjected upon a disabled person in cannot even be recommended by anymatters related to employment. one for a certain job. Lack of money (makes it difficult) toHowever, a disabled person shall be facilitate me in applying for vacanciesgiven greater access to employment but more especially employersopportunities than any other citizen in negative attitudes towards me.case of equal capacities or in case of We get very low wages and at timesequal marks in competition. not being paid at all. Being a psychosocially disabled manArticle: 19 equals to being no man at all in this society. You are neither a child nor aIn case of necessity and only due to woman but just a useless madinterest of employment, a disabled something.’ (Male – age 36, marriedperson shall be entitled to a conducive unemployed)employment environment that does notdetract the nature of his or her ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞disability. ‘I look for a job like others but I rarelyArticle: 20 get employed, where I get it at times it comes as an act of benevolence onAn Order of the Minister in Charge of the part of one who gives it to me andlabour in his or her attributions shall yet I work like others and at timesdetermine the modalities of facilitating more than they do simply becausethe disabled persons in matters related losing a job hits me harder than those Ito access to employment opportunities work with and therefore I try hard to impress my employer.. I have met outright rejection- without even testing my capability while othersRESPONSES BY INDIVIDUALS ON are either interviewed or simplyTHE SUBJECT OF EMPLOYMENT: employed.‘None can employ me since they say I am There are many problems includingMad. I only survive on handouts. But when sickness, not being paid and worst ofI am stable, I am very strong and I help all being discriminated against while atpeople carry their luggage and other the work place.’(Male – age 40,heavy things in a local market. At times married, three children, unemployed)they give me food or promise to pay me ∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞∞later which they don’t do at most times.’ 27

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