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Saturday, September 14, 2019
Emina Ćerimović is a Koenig fellow at Human Rights Watch and carried out research in 2014 on institutionalization of people with disabilities in Croatia.
NEW YORK, Jul 6 2015 (IPS) - Last week, I went to see the new flick “Love & Mercy,” about the life of Brian Wilson, a singer, songwriter, and the genius behind The Beach Boys. I hadn’t heard much about the film. In fact, I was expecting a summer movie about surfing and fun; The Beach Boys playing Kokomo, Good Vibrations, and Surfin’ U.S.A. on sunny California beaches.
I was wrong. Instead, lives of hundreds of people I’ve met unfolded on the screen.
Love & Mercy depicts Wilson in two narratives: in the first, he is portrayed at the height of his fame as the leader of The Beach Boys in the 1960s. The second features a middle-aged Wilson misdiagnosed with paranoid schizophrenia by Eugene Landy, Wilson’s therapist and legal guardian.
In the movie, Landy keeps Wilson heavily medicated as he controls every aspect of his life, including his finances, residence, family relationships and social interactions, and other basic life decisions. In one scene, Wilson talks about not speaking to his mother and daughters for years because Landy “doesn’t think it is a good idea.”
In another, Landy tells Wilson when and how much he should eat and whom he should date. Landy himself explains his influence: “I’m the control. He is a little boy in a man’s body… It is my job, my duty to approve everyone Brian is spending time with.”
Wilson did not argue against Landy taking charge for fear that Landy would have him committed to an institution. As Wilson explains in the movie: “I can’t do that [disobey Landy]. He is my legal guardian. He can do things to me… He can send me away… There’s no way out.”
As the movie unfolded, it wasn’t solely Wilson’s story that I saw on the screen. I was reminded of Tatjana and Ivan, whom I met in Croatia. They are among the 18,000 people with disabilities placed under guardianship there and denied their right to make decisions about their lives.
More than 90 percent live under full guardianship, under which the guardians – often nominated by the government – make all life decisions for them.
Tatjana was diagnosed with schizophrenia in her early 30s, deprived of her legal capacity and placed under guardianship. She is now 47 but can’t visit her daughter or her mother without the permission of her guardian – in her case, a social worker.
It is the same if she wants to move to another house, get married, sign an employment contract, make health care decisions, or even officially publish her poems. Tatjana lived for nine years in an institution against her will because her legal guardian placed her there.
Ivan is 30 and was diagnosed with mild mental health problems. He was just 16 when he was placed indefinitely in Lopaca, a psychiatric hospital where 168 people, including 20 children, are confined. He still lives there.
Ivan and Tatjana told me that they did not consent to their confinement to an institution. They were, in fact, never asked about their preferences, wishes and wants. Both of them were stripped of their right to make decisions about their lives and appointed legal guardians.
Neither Tatjana nor Ivan was present during the court proceedings determining their legal capacity so they could provide their input for this major decision about their life. While guardians are supposed to only oversee decisions with legal consequences, such as signing contracts, in Croatia – just like what was depicted in Love & Mercy –guardians can monitor and control every move a person makes.
I saw firsthand that people with disabilities trapped in institutions in Croatia can experience a range of abuses including verbal abuse, forced treatment, involuntary confinement in hospitals, and limited freedom of movement.
At a pivotal point in the movie, Landy forbids Wilson and Melinda Ledbetter, his current wife, from seeing each other. That triggers Ledbetter, the true heroine of the movie, to intensify her efforts to free Wilson from Landy’s control. She learns that Wilson’s will would have awarded the vast majority of his wealth to Landy. The good news: Wilson’s family files a lawsuit successfully challenging the guardianship.
Sadly, there are no heroines to free Tatjana or Ivan of their guardians. There is a chance of a happy ending though. Croatia, unlike the U.S., has ratified the U.N. Disability Rights Treaty, which requires governments to move away from guardianship and instead provide a system of assistance and support for decision-making that respects the autonomy, will, and preferences of the person with the disability. Croatian laws, however, don’t reflect this.
Key policymakers in the Croatian government should see “Love & Mercy.” Maybe then they will abolish Croatia’s guardianship regime and provide a wide range of support measures. Who knew that The Beach Boys’ influence could go so far beyond their music?
Edited by Kitty Stapp
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