Last week I was in Bulgaria and with colleagues we met members of the Government, the Parliament, the Ombudsman Office, the Supreme Court and civil society. I focused my visit on the draft law which would abolish guardianship for people with disabilities and introduce supported decision-making. MDAC’s interest is that we have litigated the two leading European cases against Bulgaria, and have been working with NGOs on the law reform process. I was invited to give a speech to an international conference on Friday that argued why all sectors of Bulgarian society should get behind the draft law. My presentation is below.
Why should you change the guardianship system?
Presentation to International Conference and National Forum of Social Service Providers on Legal Capacity and Access to Justice for Persons with Intellectual Disabilities
Sofia, 11 March 2016
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1. Deputy Minister, Deputy Ombudsman, Ladies and Gentlemen - In this presentation I would like to explain why I think you should support the “Natural Persons and Support Measures Bill”. I want to explain why the Government should send the bill to the National Assembly at the earliest opportunity.
2. What’s my interest? I am a lawyer, and for the past fourteen years have been working at the Mental Disability Advocacy Centre, an international NGO that uses law to secure equality, inclusion and justice for people with mental health issues and people with intellectual disabilities. We are independent from Bulgarian organisations and have been working on human rights in Bulgaria since 2002, when with the Bulgarian Helsinki Committee we organised the country’s first training seminars on the European Convention on Human Rights and how it applies to people with mental disabilities. I wrote my PhD on legal capacity and international human rights law and have been immersed in this subject for a decade and a half. Through meeting many people with intellectual disabilities and their families in Bulgaria as well as people with mental health issues, I know what the reality is for them under guardianship. I also know when the stars align and present a law reform opportunity and that is right here and right now.
3. I have five reasons why you should support the draft law, but before I take you through those, I want to tell you about one of my heroes, Rusi Stanev. In 2002 Rusi was taken from his home in Ruse and driven 400km away to Pastra, where he would spend the next seven years locked up. His only crime was to have a diagnosis of a mental health issue. Behind his back he had been placed under guardianship and his guardian had arranged a transfer to the institution, in the same way that you might send a parcel using a postal service to another person. The institution was filthy, overcrowded, cold, smelly and had terrible conditions. Inadequate heating and basic medicines caused a ten percent mortality rate in two winters and Rusi was lucky to survive. We were part of the team that took his case to the European Court of Human Rights and in 2012 the Court issued its judgment, finding that many of Rusi’s rights had been violated.
4. Rusi’s story is illustrative of many thousands of others. With that in mind, why should you support the bill? Here are five reasons.
Reason 1: The bill meets Bulgaria’s international legal obligations
5. The UN Convention on the Rights of Persons with Disabilities does not allow guardianship. The bill abolishes guardianship but retains protective measures, so meets Bulgaria’s obligations under this Convention. The Committee of Ministers of the Council of Europe will this year assess what Bulgaria is doing as a result of the Stanev judgment. This bill will bring Bulgaria into compliance.
6. Nils Muižnieks, the Council of Europe Commissioner for Human Rights, visited Bulgaria last year. He said that, “[w]hile Bulgaria has committed to enabling adults with disabilities to move out of institutions and live within the community, the deinstitutionalisation process for these persons remains very slow. “One of the main obstacles is the legal capacity regime currently in place, which often leads to the placement of persons under full or partial guardianship in institutions. I encourage the Bulgarian authorities to strengthen their efforts to change this system and move towards a system of supported decision-making.” The Commissioner is saying that this law from the socialist era is not fit for democratic country. He is saying that change is long overdue.
Reason 2: The bill enhances enterprise and the economy
7. People under guardianship are prohibited from signing employment contracts. How absurd is that, especially in country with a 10% unemployment rate? Why would it be a good idea to prohibit people from working, earning money and paying taxes? I can’t think of a reason either. The bill would boost the economy in rural areas where institutions are located, by allowing people to develop small companies and social enterprises and contribute to sustainable development.
8. People under guardianship in institutions cost the state 7,770 Leva per person per year. The disability pension in the community is much less, and we all know many people surviving on that amount, being supported to lead lives that are fulfilling. Given freedom and some resources, people can get vocational training and be supported to enter the labour market.
Reason 3: The bill increases safety and protection
9. It is natural human instinct to protect people, especially those who we think are vulnerable to exploitation, violence and abuse. None of us would live in a society where people didn’t look out for each other.
10. But there’s a myth about the relationship between guardianship and harm. Some people think that guardianship protects against harm. They are wrong. On the contrary, the evidence is overwhelmingly that guardianship is harm’s best buddy.
11. Look at Rusi Stanev. He endured sub-zero temperatures for seven years locked up in a far-away place he did not want to be in. The European Court of Human Rights said that the only reason those terrible things happened to him was because he was under guardianship. He saw people die from starvation and malnutrition in the room he was sleeping in. Those anonymous forgotten people died because they were under guardianship too, and because of this they were not allowed to complain or leave. The guardian was the director of the institution, creating an unacceptable conflict of interest. Guardianship causes harm.
12. Look at women with disabilities. They are at higher risk of being sexually abused than women without disabilities. They are at far greater risk of secretly-performed abortions and sterilisations. Their guardians can block the woman’s right to go to the police and consent to abortion, ignoring the woman’s wishes. There has not been one successful prosecution in this country of a sexually abused woman with mental disabilities, despite hundreds of victims. Guardianship causes harm.
13. Look at people who have apartments or houses, and who also have relatives who want to move in to the property or sell it. Relatives can easily persuade a court to place the person under guardianship, then send the person to an institution, and then move into or sell the property. Guardianship is a corrupt system. Guardianship causes harm.
14. Under the current law, if a person sees exploitation about to happen, their only option is to either use the consumer protection law (that does not apply to houses and apartments) or to have the person placed under guardianship which removes all of the person’s rights. Annulling a property sale is a cumbersome and drawn out procedure.
15. The draft law deals directly with this problem. Chapter 4 on “protective measures in a risk situation”, defines such a situation as “a serious and immediate risk to the life, health and property of the person.” All other ways of supporting the person must have been attempted to failure, and then a court can immediately prevent the harm from arising, appoint a person to figure out what further steps to take. This person will be obliged to gather those closest to the disabled person, discuss all the options to ensure that the decision being taken is the best interpretation of the person’s will and preferences. People in supported decision-making will be entered onto a confidential list and notaries will be obliged to check the list before authorising property sales: a new and innovative safeguard in the bill. So instead of promoting guardianship which causes harm, the new bill reduces harm, and increases safety and protection of the person with disability.
Reason 4: The bill promotes family values
16. Guardianship promotes abandonment and dislocation. The only option for people with disabilities who need support in decision-making is to do nothing or have them placed under guardianship. The current law offers no subtlety or support, but strips people of their rights and dignity. Guardianship facilitates life-long segregation and treats people as objects.
17. Supported decision-making in the draft law will finally allow what families want, namely to treat their disabled relative as a person with a history, with aspirations with wishes that have legal effect. The draft law sets out a vision which will encourage an attitudinal shift across the country from viewing a disabled person as burdensome and incapable, towards viewing that person as a human being who can participate in and contribute to family and community life.
18. The current guardianship law prevents people from choosing their partners and getting married. The draft law is better because it enables people to fall in love and get married – rights we’re all entitled to in our short time on this earth.
Reason 5: The bill breathes life into the slogan “Unity creates strength”
19. Bulgaria currently holds the Chairmanship of the Council of Europe and its slogan is, “unity creates strength”. How can we make real this otherwise empty rhetoric? Universal human rights are the foundations of the post-war settlement that prefers discussion over violence, and peace over war. But people with mental health issues, and people with intellectual disabilities have until now been denied access to these so-called universal human rights.
20. Latvia has recently reformed its laws and so has Lithuania, Hungary, the Czech Republic and Croatia. We need not look to Canada, Sweden and Ireland for our examples. People in countries that share economic, social and political similarities with Bulgaria are also stepping up and changing their laws to better serve the rights and needs of people with disabilities. These countries’ guardianship systems are not fit for purpose. Guardianship is a system that violates human rights, prevents economic development, breaks families apart, and causes harm.
Call to action
21. When Rusi Stanev was at the European Court of Human Rights, he summarised his case by saying, “I’m a person, I’m not an object, I need my freedom.” That’s exactly why we all need to take actions to change the guardianship system. Rusi is still under guardianship and he is fighting through the courts to regain his legal capacity. He has finally found people who are helping him to develop his abilities to take his own decisions. This does not mean that guardianship is good for him now or ever has been good for him. He is still at risk of his freedom being taken away, at the whim of his guardian. He wants a law to be in place to make the supports that he has assembled around him to be sustainable.
22. You may be sceptical that the new system could be better, or that the law reform process could be over. My Hungarian grandfather who died in 1987 could not imagine that the Berlin wall would fall. But it fell two years later. In history, how could we imagine slavery could be abolished? How could we imagine that women would have the right to vote? How could we imagine an end to Apartheid South Africa? The fact is that change does happen where there’s solidarity, leadership and persistence. Nelson Mandela said, “It always seems impossible until its done.” Leaders in the Bulgarian government, in the Ombudsman’s office, and in civil society believe that change not only is necessary but will happen, and so do I.
23. MDAC endorses the bill, and I encourage you to support it too. Please educate others by talking to friends, colleague and neighbours about it. Please resist any attempt to allow partial guardianship to sneak back into the bill. When the bill gets to the National Assembly things will likely heat up and there will be opportunities to make the bill even better, so contact your Member of Parliament with your ideas and encourage them to vote for the bill. Please help people with disabilities to write letters, march down the street and use other nonviolent actions to demand that this bill is passed.
24. Matters of social justice such as this must rise above petty party politics. At a time when the European human rights project seems to be cracking under the weight of xenophobia, remember that strength lies in difference not in similarities. Our unified diversity can create strength.
25. A brother with Down syndrome, a cousin with depression, a mother with dementia - disability affects every family in Bulgaria and every other country. Let us not accept for a moment longer that the difference of disability justifies segregation. We owe it to the 7,000 people in Bulgaria under guardianship, and the many others who have lost their lives like those in Rusi’s institution, to call for change. We should not accept the destiny of those 7,000 people, because we are better than that.
26. Now is the time to bring people with disabilities from the murkiest corners of our imagination, from the the furthest asylums of our countries, and from the edges of the margins of our laws. Let us demand a better legal system, so that this country takes a step closer to becoming a place where every person with a disability may live in a safe and inclusive community, where every person may be the author of their own life, where every person may grow in body, mind and spirit and where every person may be given the opportunity to love and be loved.