Learned to be patient
The interview with Lina below was written in 2013 and just a snapshot. I have no idea how she is doing now.
Lina Gulbiné is mother of three daughters. The middle one, Audré ('Storm' in English) has an intellectual disability caused by epilepsy. Audré is ten years old, but has the intellect of a child of four. She can't read or write and asks a lot of attention. Below follows Lina's story about how she looks at Audré.
'The epilepsy started when Audré was only three months old. I first was afraid she would die. One attack followed the other. The epilepsy has damaged her brain. In the best scenario her brain will develop into that of a child of eight years old. I first wanted her to become as normal as possible. Now I know I must not expect too much of her.'
Intellectual disability not well understood
Although there are special schools for children like Audré, her parents have chosen to send her to a normal school with the help of an assistant. That doesn't go well all of the time. Lina: 'I think some kids are bullying her. For instance they say "fuck you to her. She doesn't understand what it means. The teacher is an old lady. I don't have the impression she understands well what is happening to Audré.
'Audré looks normal and people treat her as a normal child. When she reacts differently compared to how other children would do in such a situation they don't understand it. To give you an example. My youngest daughter of seven is on ballet. One time, I had to pick her up and I had taken Audré with me. Audré doesn't like music. She started to cry when she heard the music. The ballet teacher told me she was frightening the other kids. After my explanation why she cried the teacher got even more frightened for the other kids. In general Lithuanians are friendly towards people with a physical or visual disability. With mentally disabled this isn't the case. They are afraid of them. There have been some murders committed by mentally disabled people.'
Asking for attention
Lina treats Audré differently from the other two. She needs much more attention. 'She doesn't know how to express her emotions. When something is bothering her she starts to touch and to bite. In such cases I do touch her and look her in the eyes. That works most of the time. It's more difficult for my husband. He's more straight forwarded. I sometimes have to cry when I'm angry at her. She then always says "don't cry mom, I do have a mental disability.'I've learned to become patient thanks to Audré. I understand she's not the same like me and my other children. She often tells me she loves me. My other daughters don't do that too often. I don't know whether Audré is happy with her life. I find it sad to see she has no friends, while she likes to have them. She therefore asks the attention of the friends of my other daughters. They don't mind.'
Worries about the future
Lina works in the care for disabled people herself. She thus knows how things are going there and that makes her worry about Audré's future. 'I'm not satisfied with the way mentally disabled are being treated in institutions. The living circumstances there are bad. I give you two examples. Some mentally disabled girls have been raped and had to undergo an abortion afterwards. There's also the story of a girl who weighted almost nothing. The responsible person in the institution said it was normal given her age. When she got in hospital and was receiving the necessary attention she got back to her normal weight. As long as my husband and I are able to, we wish to take care of Audré ourselves. After 25 years, the government finally has adopted regulation with regard to community care. I do hope her sisters will look after Audré if we're not there anymore. She can put on her own clothes and wash herself. She also knows how to take her medicines. Her intellect improves little by little. She loves to paint. Maybe she can do something with it as a kind of work.
'I'm happy with Audré and my other daughters. I do not know how is it in other countries, but usually women who have a child with a disability are afraid to get more children. They very often have mental problems too. They feel a big guilt having given birth to a disabled child and are afraid they could not take properly care of their disabled child once another child would be born. I would like to say to all women with a disabled child please do not be afraid. It is wonderful. You obviously would find time and power for all your children. It is a very big miracle and joy to watch your children growing.'
Lithuanian Forum for the Disabled
Lina receives money from the government as a financial support for the care of Audré. Although this is welcome, she would like to have more practical support. 'It would be practical if I could place Audré somewhere until I'm done with work. She can't go home from school by herself. Or a place where she can go for the weekend, so I can spend more time with my two other daughters and do things we can't do now.
'I do have contacts with other parents of mentally disabled children and with adult mentally disabled. We're in an association that's part of the Lithuanian Forum for the Disabled. We organize meetings, summer camps, exchange information and offer self help groups. The situation for disabled people in Vilnius isn't excellent. Public transport isn't accessible. Cabs are refusing to take wheelchairs with them or they ask extra money to do it. Museums are not accessible either. So, there's still a lot of work to do for the Forum.
The Lithuanian Forum for the Disabled (hereinafter LNF) is an umbrella organization, uniting 14 major Disabled Persons Organizations in Lithuania. The main aim of the LNF is to protect the political, civil, social and economic rights of people with a disability. LNF is trying to influence state policy (government and parliament) in order to improve the lives of persons with a disability. Sometimes we have a close co-operation with the government for some concrete questions (de-institutionalization, education, youth policy, for example), but in many more cases we are opposing our government (implementation of mechanisms of the UN Convention on the Rights of Persons with Disabilities, Structural Funds 2014-2020). We are organizing various discussions and meetings in order to find a common suitable decision. We have a very close co-operation and personal contacts with similar organizations in Latvia, Estonia and Sweden. We use each others best practices and exchange experiences. We also implement some projects together.
Younger Lithuanians don't wish to learn Russian anymore. Lina's oldest daughter of 13 chose to study English and French as foreign languages instead of Russian. Lina, however, speaks Russian very well. Her musical choice is 'Ja ne ljublju' by the Russian bard Vladimir Vysockij.
Copyright text: Johan Peters, June 17th - ...