Edita: My life, my voice.

What does it take to end systemic legal discrimination? To alter the way people have thought for decades and longer? Legal know-how? Yes, but that’s not all. The support of friends? Yes, but something more. Anger in the face of injustice? Yes, all these are necessary, no doubt about it. But, if things are really going to change, then at the heart of it all, you really need one person brave enough to stand up and announce, ‘Victim no more. I refuse to put up with this injustice any longer. I am going to get this system changed.’

It takes courage for anyone to stand up, but especially when that means overcoming a certain shyness and natural modesty. In Lithuania, Edita Daugėlaitė, a brave and talented young Lithuanian from the city of Kaunas, is just such a person. This is the story of how Edita became a social change-maker, blazing a trail for other Lithuanians with intellectual disabilities to follow.

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Like many other young people, there came a point in Edita’s life when she needed to leave home. After friends told her about L’Arche in Kaunas, in 2017, she decided to try it out. L’Arche is a community made up of a diverse group of people, some with intellectual disabilities, and some without. Community life is about discovering that when each person – without exception- is encouraged to share their own unique talents, then everyone benefits.

How about Edita’s talents? Smiling broadly, she replies: ‘I like ceramics and outdoor work. I like shopping for clothes, dresses, trousers, skirts, blouses, and dressing up nicely. I like socialising a lot with my friends. And something else – I really like painting my nails!’ You soon get the picture of a smart young woman who knows what she likes and doesn’t like, someone who clearly defines herself by what she can do, not by what she finds difficult.


Ceramic workshop at L'Arche Kaunas, Lithuania

Ceramic workshop


And it was Edita’s growing confidence in her abilities that provoked community leader Gedas Malinauskas to ask a simple question: ‘I may be Edita’s legal guardian, but if she is so capable, why am I taking these big decisions about her, which she could –with support- take for herself? What stops that from happening?’

The answer: a restrictive law dating from Soviet times. Essentially, this outdated law was still in force, preventing a person with an intellectual disability from taking any responsibility for their own life decisions. From Edita’s point of view, ‘this was sad. I wasn’t allowed to count my money by myself. I couldn’t do anything. I couldn’t vote…’

But how to combat a law clearly out of synch with the new positive spirit of opportunity in Lithuanian society? With Edita’s backing, in 2019, Gedas Malinauskas took her case to a judicial review. However, the judge attached great weight to Edita’s psychiatric report, and accordingly refused to grant her legal capacity. Angered by the injustice of this decision, a year later, they appealed. Result: decision confirmed.

But, undaunted by this setback, Edita and Gedas decided on a different strategy. They put together a much stronger campaign team: Saulius Dambrauskas, a lawyer specialising in human rights; Indrė Jaugėlaitė, a decision-support specialist; and Professor Jonas Ruškus a Board member of L’Arche, who had served on the United Nations Committee on the Convention on the Rights of Persons with Disabilities. Each would need to play a key part in overturning the decision. It was an arduous process. Backed by Indre, Edita decided, ‘this is my year of courage’. Daily encouragement came from the whole community, especially her close friend, Urtė Gardauskaitė, an assistant in L’Arche.

But changing an ingrained legal attitude is never easy, as Jonas Ruškus explains: ‘when it comes to persons with cognitive disabilities, all matters regarding them are considered from the medical point of view. That is very challenging.’ Saulius Dambrauskas underlines how this negative attitude had pervaded the review system itself: ‘Edita had been asked all sorts of questions, including on the economy, and her perception of politics!’ Not surprisingly, such loaded questions were designed to put Edita at a disadvantage: ‘I was lost somehow… the judge didn’t really understand what I was saying.’

During the final process, the judge was made aware of Lithuania’s obligations as a state party of the UN Convention, especially regarding equality before the law and legal capacity and supported decision-making for all people with disabilities. Eventually, judgment was passed: ‘impairment should not be used as a justification for the deprivation of legal capacity’.

It was a great day. Edita celebrated her win with a party, ensuring each of her supporters got a present: ‘I feel happy to have become active: I can count money, I can walk alone. I can vote.’ Even the Minister for Social Security came to congratulate her. Edita, the shy, modest woman of deep courage, had become legal and social change-maker.

Edita from L'Arche Kaunas

Edita in front of the Kaunas District Court

Jonas Ruškus welcomes the landmark ruling: ‘It was a breakthrough. Finally, something is happening. One person made a structural change, and I saw how this liberated Edita: she started saying, ‘I want to go to work. I want to go into society. Suddenly, her preferences, her imagination and aspirations flourished.’

But Edita’s legal victory has a wider significance. Professor Ruškus again: Edita’s case set a legal precedent, which the Lithuanian Disability Forum will use to liberate other people with intellectual disabilities.’ And things are now moving quickly in that direction: the Department for Disability has asked Saulius Dambrauskas to provide assistance in such cases, and inquiries are beginning to arrive.

Potentially, there are many other ‘Edita’s’ out there. While statistics on people with intellectual disabilities are not collected centrally in Lithuania, global research suggests that on average, a given population will include about 1-3% who have some kind of intellectual disability. So in Lithuania (total population: 2.7 million), this would translate into 27,000 -81,000 adults and children.

Each day now, Edita is takes full advantage of her new capacity. But one day stands out above others: the wedding of her friends, Karina Lazauskienė and Aidas Lazauskas:  Edita’s legal capacity was granted in time for her to sign the registry, as an official witness.

Congratulations to the whole team, but especially Edita Daugėlaitė – a witness for your friends, and a change maker for your society!


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