Why not?! Maybe someone will say – another festival, another event. Not quite. Because the Ability fest Sofia as it will happen on 8 October under the domes of the Largo, is an event where we all will attend driven by various motives and hopefully we will all leave with a little bit more common understanding about the world and the idea about it, about the role of every person, about the similarities between us, not the differences. But the topic of the present article is not devoted to convincing the reader to come, to see, to try, to challenge his/her own abilities and perceptions. No, this article has another purpose and it is to tell the story of why we decided to organize the Ability Fest Sofia.
This story is not about a person; it is a story about old and new, about tradition and innovation, about guardianship and supported decision making, about the current Law on Persons and Families and the draft of the Law on Physical Persons and Support Measures. Anyway – this story is the story of thousands of human faiths.
In 2012 the Bulgarian State ratified the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and “promised” that disability will never be a reason for discrimination. Several months later the Government adopted the Concept for amendments in the national legislation, related to the implementation of the standards of article 12 form the UNCRPD. We took this as a sign for the responsibility of the State and its serious attitude towards reforming the outdated guardianship system and keeping it up with the latest standards on equality for people with disabilities. The following political crises quickly brought us back to reality – and we understood that the State often changes its opinion on the issue. For four years already the draft Law on Physical Persons and Support Measures that embodied the given promise in the beginning has an obscure future.
In the leading roles of this story are:
The Ministry of Justice has the leading role regarding the topic of human rights. It is an institution that represents the Bulgarian state before the European Court of Human Rights. Bulgaria has been convicted twice because the placement in social institutions is not based on the individual choice of the person. And both cases have been won by people under guardianship. The Ministry of Justice is responsible also for the reform of the guardianship system, but it is helpless without the support of the Ministry of Labor and Social Policy because it is managing the social service system that is supposed to develop the skills and abilities of the person including those related to decision making. In order for the reform to take place, these two institutions have to work together, in collaboration. Till now none of this has been demonstrated. The reasons for that are unclear.
We should not forget about the important role of the Parliament. This is an institution at the highest rank that is responsible for the reform and as the Constitutional Court said in its „decision“ – “The protection of the rights of persons with mental disabilities is within the remit of the National Assembly which should pass the relevant legislation regarding legal incapacity.“. The previous Parliament (43rd National Assembly) passed the draft Law on first hearing in five committees, but after that it lost somehow the energy among other super urgent and important bills. Who and how can drive the Parliament to act? Maybe another case in Strasburg where the compensation will be paid with the money of us all?
The Agents of Change
The Agents of Change are people, organizations, alias and followers. This is a group that includes civic organizations working with or for people with special needs, experts in various spheres – lawyers, social workers, medical specialists, leaders of opinions such as journalists and community leaders, relatives and friends; among us there are people with intellectual disabilities and psycho social problems, there are those who fight over the guardianship system and those who, unfortunately, didn’t succeed. But we all are united by the belief that:
• Every person, no matter he/she has a disability and how serious it is, has desires, preferences and will;
• The desires, preferences and will should always be recognized and considered, despite the problems in communication;
• Every person, no matter he/she has a disability and how serious it is, is capable to build relationships of trust with another person;
• Every person, no matter he/she has a disability and how serious it is, in a specific moment needs support when taking decisions and receives this support from those who he/she trusts.
The Agents of Change participated actively in the process of elaboration of the draft Law on physical Persons and Support Measures. They shared experience, organized discussions and trainings, invested their entire energy in advocating for the supported decision making concept. They received the recognition of the international human rights community from highest ranks. They keep the hope that Bulgaria could be among the first to adopt that innovation and require from the State to be responsible and consistent in its decisions when the issue concerns people’s faith, equality, basic human rights.
The tradition of Guardianship
„The minors and adults who due to mental disease or intellectual weakness are not able of taking care of their own affairs, should be placed under full guardianship and they become legally incapable.
The adults with such sufferings whose condition is not so hard, in order to be placed under full guardianship, should be placed under partial guardianship.“ (article 5 from the current Law on Persons and Families, adopted on 9 August 1949)
Usually people who have diagnose of mental illness are considered as more “in-capable” and the best “protection” that have been very often offered to them is to be placed under guardianship. The consequences are far from the idea for freedom, protection and care that someone could put in such mechanism. The people placed under guardianship, despite of their desires and preferences:
• Do not have the right to decide (where to live, what to do with their money) and someone else shapes their life according to his/her judgement and interest;
• Are deprived from the right to create family and to marry;
• In most cases are enforced by their relatives to live in social institutions for the rest of their lives.
The outcome – very often their placement under guardianship puts them directly in social isolation. Till 2012 nearly 7500 people in Bulgaria are placed under guardianship, 3500 of them are placed in social institutions to be taken “care of”, and there their right to live free from torture and disgrace is deprived. Guardianship has not been invented to disable people. Guardianship has been elaborated to provide protection. But in other time, context and where other values in the relationships between people had existed.
The innovation Supported decision making
A fan of measures that are enforced when someone with special needs requires support in taking decisions about his/her personal life so that these decisions would be respected by everybody else. The Supported decision making is for a specific period of time and for specific spheres of life where the person has difficulties to cope on his/her own. Because of this, it is the key towards empowerment and at the same time is a safeguard against subjecting the life of people with disabilities to the interests, ambitions, fears and perceptions of others.
This social innovation is in the base of the draft Law on Physical Persons and Support Measures. It is already adopted in Ireland, Australia, Canada, the USA, and Israel. Very often people ask us about Germany. The truth is that Germany had reformed its legislation in the beginning of the 90’s in a way so that guardianship there has nothing in common with the guardianship here. And if we take this as a standard then let’s do what Germany has done.
Participation in three working groups and 6 years of conferences, trainings and discussions, shared opinions and recommendations form experts and professionals on national and international level could not make the “responsible” institutions to take responsibility. And this is why we decided to organize the Ability Fest Sofia – to put the topic for equality before the law of people with disabilities in another way and in another context, to bet on the civic energy for change and acceptance.
If you think that it is the people who decide, if equality is a shared value for you, if you are convinced that guardianship system should be abolished, come to the Ability Fest Sofia.
Since 2012 the Bulgarian Center for Not-for-Profit Law, the Bulgarian Association for People with Intellectual Disabilities and the Global Initiative in Psychiatry – Sofia develop a pilot program for supported decision making. By now the program had provided support to 150 people who had been placed under guardianship or are in a big risk to be placed under guardianship, providing them with alternative model for independent exercise of rights.