mdac friends’ monthly brief june 2015 november 2015 © unicef inside 7 welcome to this month’s edition of the mdac friends’ brief. in last month’s edition, i wrote about my visit to prague. this month, them to the people we have represented, and people we work with, and to visit an institution where 89 people live (read more about this on pages 8 and 9). to everyone who attended, mdac would like to thank you for joining us on what i hope was both an enjoyable and educating weekend. hungary appalling psychiatric institutions children on bench. © unicef. 5 3 landmark ruling calls for inclusive education human rights defenders read about the unsung heroes in the disability rights field bulgaria read about mdac’s study tour in sofia 6 8 november. © mdac. study tour in early november. © mdac. providing you with information, opportunities and requests 2 also in this edition, is news about our unprecedented win in the slovakia supreme court in late october: we are tremendously proud of this judgment which is explained in further detail on pages 3 and 4. on pages 5 and 6, our project manager, anna zeller, writes about some of hungary’s closed psychiatric institutions, and the importance of human rights monitoring. some human rights defenders who have played, and continue to play, an influential part in the disability rights movement seldom receive the credit they deserve: on page 7, steven allen, mdac’s campaigns director, singles out some unsung heroes. you can catch up with the mental disability rights news from the last month on page 10. lastly, you can read about a ‘microscope event’ we hosted earlier this month in london on page 11. if you would like to meet in london, please let me know. kind regards, oliver rusi stanev enjoying freedom in sofia © mdac night-time in budapest, mid-november © mdac mdac’s ceo, oliver lewis (right), meeting mdac’s former client, dojchin, during the study tour © mdac mdglorious autumn sunshine in central budapest. © mdac. mdac’s ceo, oliver lewis (right), meeting mdac’s former client, dojchin, during the study tour. © mdac. night-time in budapest, mid-november. © mdac. 3 slovakia: supreme court says denial of inclusive education can be discriminatory in the last week of october 2015, the slovakia supreme court delivered a crucial decision which could help as many as 20,000 children with disabilities in slovakia pursue inclusive education. “the presence of children with a disability in a group of healthy children is mutually enriching for both parties. children learn empathy and acceptance of differences.” those were the words of an expert opinion the supreme court quoted in their decision. the issue at stake was whether it would be in breach of international human rights law, for a local educational authority to refuse a child admission to a mainstream school on the basis of their mental disability. on the facts, ela, a happy and playful ten year-old girl, had been denied entry to a mainstream primary school in bratislava, slovakia on the grounds that the school could not accommodate her specific needs. ela’s parents challenged this decision, but their appeals were dismissed at a regional level—it was left to the supreme court to put things right. and put things right they did: they ruled that the un convention on the rights of persons with disabilities (crpd), which slovakia ratified in 2008, imposes a positive obligation on schools and relevant authorities to, so far as possible, provide individualised support for children with disabilities so that they can experience inclusive education along with the rest of the other boys and girls. in making this decision, the supreme court held, after consulting with expert psychological reports and other relevant materials, that it would be in ela’s best interests for her to participate in mainstream education. no one was more delighted hear this than ela’s parents who, speaking after the judgment, said: “after hearing the decision, we felt relief and hope for our daughter, as well as for all children with disabilities who are denied the right to inclusive education. after numerous unsuccessful discussions mdac team in a special school in prague © mdac ela (second from left) with her family. source: family photo. 4 with the slovak educational authorities, the judgment brings us great satisfaction in the knowledge that they can no longer act out of step with the principles enshrined in the un crpd.” mdac has long argued for the right to inclusive education for all, as seen most recently in a report we, with support from slovak ngos, submitted to the un this year, which revealed shocking statistics in respect to the number of children with disabilities in slovakia who are educated in segregated settings. as mdac’s ceo oliver lewis pointed out, “this judgment is a wake-up call for slovakia and for countries around the world that segregate children with disabilities, or from ethnic minorities, into special schools that start them on a children on a trajectory of social exclusion, unemployment, ill-health and poverty”. mdac welcomes this decision from the slovak supreme court which will send a clear message to schools and connected authorities that they must do their very best to accommodate children with disabilities in mainstream education. failure to do, we now know, this will leave the relevant body in violation of the international human rights law on the grounds of discrimination, by denying children, like ela, the right to inclusive education. the slovak supreme court advanced social justice in this case which is a clear sign of progress. this decision comes after another historic ruling earlier in october, by the bratislava regional court, who said that local authorities must provide in-home support to the parents of a four-year old girl with profound multiple disabilities. in both those cases, maroš matiaško, a lawyer who works with mdac, represented the clients. speaking after the victory in ela’s case, he said that school segregation should be “consigned to history”. this can achieved so long as the right steps are taken by the government of slovakia to bring about change. we urge them to respect the letter of international human rights law, and abolish educational segregation with the aim of establishing a framework which adequately provides for the inclusion of all children into mainstream inclusive education. that way, children like ela, can grow up in an common learning environment which fosters inclusivity and non-discrimination, which we hope will help decrease the stigma attached to people with disabilities. inspiring inclusion in education one of the most common problems we encounter when advocating for inclusive education are negative attitudes – including from teachers, pupils and educational psychologists. seeing is believing, and so we’re on the look-out for stories and people who can help inspire others to acquire inclusion for all children with disabilities. do you know a teacher who is passionate about including children of all abilities? have you or your children had positive experiences of including children with disabilities in the classroom? are you aware of any innovative schools that promote a fully inclusive environment? if the answer to any of these questions is “yes” then send us an email to support@mdac.org 5 in late october, the psychiatric unit of the merényi gusztáv hospital in budapest made headlines in the local and national press after a series of tragic cases. on 30 october, an 86-year-old man who was hospitalised in a locked psychiatric ward was beaten to death by his roommate. days later, a 31-year-old man tried to escape through a window and was seriously injured. he was not the first patient who has tried to escape the psychiatric ward in this manner: three other patients attempted the same fate. one of them managed to climb down the building, another broke his spine and the third patient was found dead. “it seems that some people would rather choose death than living in this inhumane closed ward” said a member of staff who works at the unit to a reporter. in february, a monitoring team from the ombudsman’s office visited the unit. they found deplorable physical conditions and uncovered several human rights violations, including finding a man tied to his bed and a radiator, given tranquilisers against his will (see picture, bottom left). following the visit, the ombudsman urged the government to shut down the psychiatric ward. the government did not comply. instead, it decided to allocate 405,000 hungarian forints (approximately 130,000 euros) for renovation: but no amount of money can change the degrading regime people are forced to live under. this conditions in this psychiatric ward are particularly gruesome, but it is not the only facility in the country where people with mental disabilities suffer these abuses. the ombudsman’s monitoring team visited a social care institution in eastern hungary earlier this year upon mdac’s recommendation. it came to light that some of the residents were kept in cage beds, despite the fact that these have been banned since 2004. they also found that female residents were forced to give their consent to contraception and patients were institutions in hungary: it is time for the government to act anna zeller project manager © office of commissioner for human rights, hungary. © borsoonline.hu. “people would rather choose death than living in this inhumane closed ward” – staff member 6 permitted to use an “intimacy room” only where they had been in a relationship for more than three months. the director of the institution was subsequently dismissed, but not yet is it clear whether this regime has improved. these are just a few examples of how institutions violate the rights of people with mental disabilities. the hungarian government argues that closed wards help protect and care for such people, when in fact have proved to be breeding grounds for rights violations. mdac advocates that the government of hungary fulfills the obligation under article 19 of the convention on the rights of persons with disabilities (crpd) to ensure the right of all persons with disabilities to live independently and be included in the community. they can do this by introducing a moratorium on new admissions to social care institutions so that the next person on the waiting list is supported to remain in the community. as long as hungary stays committed to mass institutionalisation, tens of thousands of people with mental disabilities will continue to be segregated from society where they are at risk of abuse and neglect. this leaves the hungarian government in breach of international legal treaties, including the crpd which it ratified in 2007. it is crucial that regular and effective independent human rights monitoring takes place to ensure that rights of people with disabilities are respected and protected, and human rights violations are remedied. mdac has already developed a toolkit to help monitors in a practical way. we are now in the process of adapting it for use in children’s institutions. we will use it to train lawyers and human rights defenders seeking to change the system. mdac hopes that the revised toolkit, once complete, will be used by monitors to great effect in order to combat the ongoing and pervasive problem of institutionalisation in hungary, and around the world. psychiatric unit of merényi gusztáv hospital. © index.hu. merényi gusztáv hospital in budapest. © index.hu. 7 who comes into your mind when you think about human rights defenders? perhaps it is the inspirational figure of malala yousafzai who has become a global icon fighting for education for girls in spite of a shocking attempt against her life by taliban-inspired hooligans. maybe you think of jailed saudi blogger raif badawi, who was sentenced to 1,000 lashes for his outspoken criticism of the saudi government, an act of defiance that recently earned him the coveted sakharov prize for freedom of thought. and who could fail to be encouraged by aung sun suu kyi’s decades-long battle against military dictatorship in myanmar? such heroines and heroes frequently become synonymous with much broader social movements, and serve to catalyse global focus and attention to end various human rights violations. their stories become popular because they personify the struggle for human dignity, often against seemingly insurmountable odds. when it comes to disability rights, it becomes more difficult to come up with such names. activists associated with disabled people against the cuts (dpac) in the uk have achieved some notable successes, such as initiating a un investigation into the dramatic impact of public sector cuts on the lives of people with disabilities. at mdac, we have the privilege of collaborating with numerous disability rights defenders around the world on a daily basis, many of whom selflessly tackle widespread rights violations at personal cost and with little recompense. so, in this article, i want to give some recognition to just a few of these unsung heroines and heroes, without whom the world would undoubtedly be a worse place. in bulgaria, tatyana refused to accept discrimination against her son dojchin which barred him from higher education; his case created a precedent which has benefited thousands. in uganda, the lawyers at the centre for human rights, health and development (cehurd) are leading the charge against health rights violations (read about a crucial maternal health judgment they recently achieved) and helping us tackle abusive practices in psychiatric institutions. in india, ratnaboli ray has shot to national attention for her strident activism on mental health rights as both founder of the charity anjali and as host of a current affairs programme “bhalo achhi, bhalo theko”. in moldova, petru mosculiac is the sole independent inspector of the nation’s psychiatric facilities warehousing over 1,500 people and dealing with serious rights violations on a daily basis. everyday people doing things which are ordinary for them, extraordinary for others. we are privileged to work with each and everyone of them. human rights defenders steven allen, campaigns director human rights banner. © un. 8 ten fabulous people joined me on the study tour to bulgaria. it was the first time we’ve ever done one, and the idea was recommended by a friend of mine who advises philanthropists. he said the only way a charity can enable their supporters to really become engaged with the cause is to facilitate contact between the supporter and the beneficiaries. mdac’s difficulty is that we’re an international organisation which on an every-day basis feels distant to our beneficiaries, so we decided to close the gap by taking people to one of the most interesting countries where we work. having sent out a bumper learning pack a week before the trip, we met up at heathrow early on friday morning. after a pleasant flight we arrived in sofia on friday lunchtime and immediately went to see the day-care centre run by an ngo called gip-sofia. they told participants about the funding mechanisms in the country, and the pull towards large residential institutions, the numbers of which have remained pretty static for many years. participants also met rusi stanev, who is one of our clients. rusi explained his 8 years in an institution and how he met aneta genova, our bulgarian lawyer who with us, litigated his case in strasbourg for six years until we won in 2012. on saturday we went to an institution called podgumer, near sofia. there, 89 men live out their entire lives. upon arrival, the director had prepared a spread of food for us, and had even rolled out new carpets for the corridors. it was touching and depressing in equal measure to be reminded that external visitors to a social care institution are so rare in bulgaria that management thinks it can impress guests with hospitality and cosmetic changes. i visited the institution in 2008 and nothing has changed. some residents have died, and others have grown older. there is a new director but the ethos is the same. “residents are so disabled that they have no spiritual feelings,” explained the social worker. “they are so disabled they could never live in the community,” said the director. the fact that bulgaria has ratified the un convention on the rights of persons with disabilities that sets out the enforceable right to community living,which is not dependent on level of support needs, was not something that was on the institutional radar. we returned to the hotel for a thorough debrief, allowing participants to share observations and their feelings. after lunch we had a session on mdac on tour: study group in sofia oliver lewis, ceo study group tour learning about history of sofia. © mdac.. on 6-8 november, mdac hosted a study tour to sofia, leading ten supporters through the progress and challenges of one of the eu’s newest member states. 9 guardianship reform from nadia shabani of bulgarian centre for not-for-profit law, who is one of the key leaders of social reform. nadia explained the supported decision-making pilot project which she is running with support from michael bach of canada, an mdac board member. that afternoon we took some time off to have a walking tour of sofia, followed by traditional food and drinks for dinner. sunday morning was focused on children. a unicef colleague explained our collaboration and we watched our joint video, which features dojchin and his mum. they joined us for the morning. ten years ago when he was 16, dojchin was denied further education because of his disability. he explained how he had just learned to read and wanted to continue education to learn more and be with his friends. dojchin’s mum was so angry with the authorities denying her son his education that she launched legal action, supported by mdac. she said “i knew from the very beginning that whatever change occurs wouldn’t have a direct effect on us: this would take a long time for it do so. despite that, the case makes me very happy—i feel empowered. and i do tell other people they should pursue and fight for their rights and they do have the power to change.” the participants of the study tour were, i think, bowled over by dojchin, by rusi, by our bulgarian colleagues, and by the experiences in the institution. jennifer randall is an mdac trustee, and she said, “i loved this weekend! what an amazing group you are! i have been around mdac since 2007 and it is an honour. once again, i was buoyed by the work of mdac and the commitment to these issues as expressed by people on the trip and those working each day on advancing the rights of those that society excludes and makes vulnerable.” another participant said, “thank you all for an enriching, moving and deeply rewarding experience. despite the many obstacles, i see hope for the future, thanks to the extraordinary dedication and resilience of those who are involved at the ‘coal-face’ and the ngos that so ably support them.” i’d like to thank my bulgarian colleagues and the people from the uk who joined me for the study tour. watch this space for an opportunity to join another study tour in the new year! “i was buoyed by the work of mdac and the commitment to these issues…” – jennifer randall mdac vice-chair, peter chivers, during the study tour. © mdac. professor george szmukler making banitsa (a traditional bulgarian bread) during the study tour. © mdac. 10 can you help? news flash here are some developments in the global mental disability rights field that relate to the work mdac carries out: schools for all article 24 crpd: call for submissions on draft general comment slovakia supreme court: denial of inclusive education can amount to discrimination (mdac) only 15% of children with disabilities attend school in greece: committee on economic social and cultural rights (un) tells government to act (cescr) inclusive education should not be dismissed as irrelevant in europe, as a sustainable development goal (coe) i’m a person conference on sexual and reproductive rights brings together mental disability and roma rights advocates (mdac) commissioner for human rights (council of europe) visits slovakia: deinstitutionalisation is too slow (coe) un disability and health experts on world mental health day: all governments must end involuntary psychiatric treatment (ohchr) my home, my choice community support services must be available for children with disabilities, rules slovakian court (mdac) european accessibility act is ready for approval, confirms european commissioner of social affairs (edf) as you know, we recently created “mdac friends” scheme as a way to enable people to support our work in a structured way. do you know anyone who would like to support and hear about mdac? we want to increase the numbers of people who can help us: perhaps you can help us with this? are there people within your network who you could introduce to us? please consider this, and do discuss it with our ceo oliver lewis, who can be contacted at oliver@mdac.org. more information about mdac friends is at www.mdac.org/friends. newspapers. © los angeles times. 11 microscope events on friday 20 november we had a evening microscope event on inclusive education. steven allen, mdac campaigns director, spoke about our work helping roma children with disabilities access inclusive education. michael bach, executive vice-president, canadian association for community living and mdac trustee, spoke about the practical ways in which teachers and society can help children access common learning environments, even if they have significant disabilities. tara flood, ceo of the alliance for inclusive education spoke about her own segregated education and how she and colleagues are now pioneering advocacy for inclusion in the uk, despite a lack of policy commitments from government. george howe from dla pipers’ pro bono team, explained how the firm is helping unicef, and how they are engaging in a project with mdac with the ambitious goal of changing disability education law in several countries. anna lawson, professor of law at the university of leeds and former mdac trustee, explained that she is a “segregation survivor,” and set out the international legal requirements on governments to shift from a system of educating children with disabilities separately, to one where support is provided so that all children can learn together in a common learning environment. we are planning some events in the new year. we will email our friends and patrons about these as soon as we have further details. contact mdac budapest office: +361 413 2730 friends should contact our ceo on 07769 344 102 email: support@mdac.org twitter: @mdacintl website: www.mdac.org find us on facebook po box 68543 london sw15 9fp mdac is a charity and company limited by guarantee in england and wales (registration number 1124016). our africa briefing event at herbert smith freehills in london. © mdac. we are active on facebook and twitter. please follow us, share our content and retweet us! mdac’s ann campbell (left) and oliver lewis (right), enjoying traditional bulgarian music during the study tour. © mdac.
