“I want to leave but I can’t,” Ana told me. “I have a guardian. I told my sister and my doctor [that I want to leave this place], but my guardian has a say.”
Ana is among 18,000 people with intellectual or psychosocial disabilities placed under guardianship in Croatia, and stripped of their legal capacity – the right to make basic decisions - to marry and form a family, to consent to medical treatment, or to sign an employment contract. A significant majority have been placed under full guardianship, under which guardians – often nominated by the state – make all decisions for them.
But that’s about to change.
In September, Croatia, adopted a new Family Act that abolishes full guardianship for people with disabilities and calls for courts to review decisions taking away someone’s legal capacity. It gives some hope to people like Ana.
It was a warm, sunny day in May 2014, when I met Ana (not her real name) in the garden of her “home” – a psychiatric hospital in Lopača in southern Croatia. I went to talk with some of the 168 people with various mental health conditions who lived there, to learn about their experiences in the hospital and their hopes for the future.
What I heard haunts me to this day. Some people told me they were being forced to take medication, with nurses prying their mouths open and shoving in tablets. Others told me that they had been confined to a locked room without any explanation for days at a time, tied to their beds or injected with sedatives, waking up groggy and confused.
Some people vividly described torment and verbal abuse by the staff, who shouted at them and called them “imbeciles.”
And some had been at Lopača long-term – for more than a decade. Their confinement there amounted to indefinite detention. Why? Because in Croatia psychiatric hospitals were not included in earlier national efforts to move people with disabilities out of institutions and into the community and because they were stripped of their right to legal capacity to make such decision.
Ana’s father sent her to the psychiatric hospital when she was 14, after she was diagnosed with paranoid schizophrenia. She is now 30 but her father continues to make decisions for her as her legal guardian. So Ana has spent half of her life trapped in a hospital, robbed of so many things we take for granted like going to the grocery store, deciding where and with whom to live and even when to wake up in the morning.
Croatia’s new law is an attempt to comply with the Convention on the Rights of People with Disabilities, an international treaty the country adopted in 2008. The treaty requires governments to ensure that people with disabilities live with dignity and in a place they freely choose.
With this move, Croatia took an important step toward providing opportunities for people with disabilities to make their own decisions. However, it doesn’t go far enough.
Under the law, courts retain the power to place people under “partial guardianship” - meaning that courts can specify activities that a person is deemed incapable of undertaking and for which a guardian can make decisions.
Removal of legal capacity, even when it occurs in relation to a single area of decision-making, can have significant consequences. A court could rule that Ana is capable of deciding whether to marry or take a job, but it might leave her father to decide about medical treatment. That could leave her confined to a hospital, cutting her off from any opportunity to make those other decisions.
While the Family Act urges guardians to respect personal wishes and attitudes, it also stipulates that personal preferences can be overruled when they are contrary to their “best interests.” The best interests are to be assessed by the guardian – in Ana’s case, her father.
Finally, even if a person regains their legal capacity, Croatia doesn’t have support mechanisms to help them exercise their right to make decisions. Leaving someone without the advice and support they might need to reach and communicate their decisions might open the way to further abuses.
Croatia should replace its guardianship regime with a system of assistance and support in decision-making that respects people’s autonomy, will, and preferences, including the right to give -- and withdraw -- their consent for medical treatment. It should also repeal its mental health law and the law on social protection that permit involuntary commitment of people with psychosocial or intellectual disabilities to hospitals and institutions.
UN experts called on governments in early October to “put an end to arbitrary detention, forced institutionalisation and forced medication, in order to ensure that persons with developmental and psychosocial disabilities are treated with dignity and are provided their rights to both, have their decisions respected at all times, and have access to the needed support and accommodation to effectively communicate such decisions.”
As I heard again and again from dozens of people with disabilities in Croatia, having the right to make decisions means having freedom. For Ana, this could mean the chance to finally leave the hospital, be free from forced medication and, as she told me, “to restore my human dignity and to be as free as a bird.”