- I have never paid attention to her age - Leokadia Rzepińska adjusts the hearing aid. Fragile and dry as a leaf, she still has some energy at the age of eighty-two but she hasn’t been able to hear the voice of her daughter for a long time. She can barely hear the phone ringing. She picks up the receiver and shouts that it is Leokadia speaking but she doesn’t know who the person on the other side of the phone is. She is now sitting on her sofa in her flat at Bachmacka Street in Mokotów in Warsaw clasping her hands in the lap:
- Ela doesn’t have even a single tooth. I have lost just four! I spent two thousand zlotys to have dentures made for her. Ela washes these teeth three or four times a day because mummy told her to do so. She calls me ‘mummy’ And she is deaf. Just like me. She spends hours in the toilet. She tears toilet paper into small pieces. Each piece must be folded neatly. The worst thing is that she had to stay in a social welfare home. I couldn’t take care of her anymore. Yet, I can’t bear being apart. - Mummy cries.
In 1929 life expectancy of people with Down's syndrome was on average nine years. In 1983- it was twenty-five, whereas now it is more than fifty.
Ela is sixty.
Miecio always carries an embroidery frame. Sticking out his tongue in concentration, he weaves a thread with a thick needle through the cloth. He pulls the thread so that it makes a pattern. Miecio doesn’t know what kind of pattern it is. He cannot name the colours of different threads but the thread makes him feel needed.
-What a beautiful handicraft you have made today, Miecio!- Bajbaja coos over him.
My silly little thing, my goo-goo eyes – Miecio addresses her like this.
Small, plump, silver-gray haired. He turned sixty-nine not long time ago but he still likes lollypops. He has been pacing with little steps the corridors and staircases of the social welfare home at Wójtowska Street in Warsaw for the last twenty-two years.
Barbara Jaworska cannot remember when Miecio named her Bajbaja but it remained like that. She partially reconstructs Miecio’s biography from the archive files:
- He was born during the war, in autumn 1943. He came here with his mum (born in 1907) in 1990. They lived in the same room. Mum used to work at the post office, dad was an economist. I don’t have any information when he died. They lived in Ochota (the district of Warsaw). Miecio also lived in a social welfare home in Góra Kalwaria near Warsaw…
Bajbaja interrupts for a moment. She has been working here only for four years and she can’t answer many questions.
- Each social welfare home creates the history of each person from the moment they arrive there. The documents are not transferred when the resident leaves the place. That is why it is impossible to learn anything about the history of such a family because the files are kept by subsequent social welfare homes. Then, they are kept in the archives for sixty years.
The identity of Miecio resembles shattered glass as his mother, whose memory stored her son's past from the moment he was born, passed away.
- She died in June 2000 – Bajbaja reads from the files. – She was ninety-three.
She won’t say that Mietek was born during the greatest terror that touched the capital, Warsaw, when it was governed by the SS and police leader - Franz Kurchera. It wasn’t the right time for Janina Krupińska, aged thirty-six at that time, to worry that her son suffered from Down syndrome. Did she know about it at all at that time? Many years later she will bring along her son to the social welfare home in Góra Kalwaria. Just because “she has been operated” – as it is stated in the files and she will not be able to find any more strength to take care of him.
Described as “calm, able to walk, self-sufficient”, Mietek will stay in Kalwaria for five years since the 1st April 1985. “Mentally retarded, an imbecile” – state the files. Nothing more.
Joanna Garlicka was born during the war too. The same year as Miecio – 1943. She had cyanosis blue and she wasn’t able to suckle. Professor Jonscher, an eminent pediatrician, told her parents at that time that it was mongolism (an outdated and offensive term for an individual with Down syndrome).
-There wasn’t any other term for that – recollected Joanna’s father, Roman Garlicki many years later.
The Garlickis’ house burned before their very eyes during the first days of the uprising but the family survived. With heroic effort and great help from private tutors, the Garlickis taught Joanna to read, write, count and even to play the piano for many years (at that time there were not even nurseries for disabled children). They simply taught her how to be self-aware. As much as her disability made it possible for her.
Roman Garlicki and his wife, Ewa, are almost an iconic couple among the parents of the children with mental disability. Tall, slim, and wearing glasses, he was an eminent specialist on insurance and labour law. She was the secretary of Polish repatriation missions after the war. An attractive ethereal blonde. Owing to Joanna’s parents, the first Committee on Children with Special Needs was created in 1963. Ewa Garlicka presided over it for sixteen years until her death.
Asked about Joasia Garlicka, Beata Śliwińska, nowadays the manager of the Occupational Therapy Workshop of the Catholic Association for the Disabled at Deotymy Street in Wola in Warsaw, smiles immediately:
- I talked to her once about her disability and she told me: “I am different, you know. I have Down syndrome”.
“What does it mean?” – I asked her.
“You know, there is one thing that I have more of than others. Daddy told me. That is why I talk in a different way…”
“Do other people know that you have Down syndrome?”
“No way! I do not tell them a word about it!”
Urszula Koziarska, nowadays the psychologist from the community “L’Arche” in Warsaw, met Joasia when she studied psychology at the Catholic University of Lublin. Like other students, she went then to the retreat for the youth in Szewna:
- It was love at first sight. Joanna played the ghost of Zosia from the second part of Dziady (Forefather’s Eve) by Mickiewicz. She played so convincingly that I was speechless.
It was September 1980. The retreat in Szewna near Ostrowiec Świętokrzyski was run by Jean Vanier - the founder of the International Association Faith and Light (which associates intellectually disabled people, their families and friends). The son of the governor of Canada, ex-officer of war navy and the doctor of philosophy who found his vocation when he moved in with the intellectually disabled in 1969. He called his home L’Arche (The Ark).
“He who hasn’t experienced the bitterness of life will never find the sweetness of heaven” spoke Joanna-Zosia adorned with a wreath, the ghost of a beautiful shepherdess who died very young and never experienced love.
Joanna was thirty-seven at that time.
Fragile and tiny. Her big and lively eyes live on their own, as if they were independent of her face. They are happy at the sight of everybody who calls her by her name. Tiny hands, one nail painted red. An old child. Ela, called by her friends Rzepcia, has lived for a few months in the Social Welfare Home at Hetmańska Street in Warsaw. Leokadia Rzepińska visits her daughter once a week:
- I have raised her all by myself from her childhood. I was afraid that she would be crying when I leave. Yet, when I came back, she reacted as if nothing had happened. I cannot cry at her presence but my heart cries. I am surprised that I kiss her goodbye, leave and she does not speak a word. It is good because I know that I have to leave her. What am I to do? I won’t live another eighty-two years.
The mother’s despair is intensified even more at the recollection of the poverty that she was raised in and which accompanied her all life long. Leokadia saw her own mother only in the photo showing the latter wearing a dark scarf lying in a coffin with her hands clasped.
- I was seventeen when I got married - she looks back. - One year later I had a baby. Ela is my second daughter, the older was born healthy. I rolled the dough for pasta with an old wine bottle. We had nothing.
Nobody told Leokadia that the girl was ill. She was worried that the girl couldn’t walk and she didn’t speak like her sister.
- Finally, some nurse told me: “You should go to Sobieskiego Street. There is an outpatient clinic for such children”. “What kind of children?”- I asked her. It was only then that I learned what was wrong with her. It was a blow for me. Somebody told me to bathe her in a brew made of hay. I carried whole sacks of hay for her to start to walk. I soaked her everyday again and again. She started walking when she was two.
Leokadia worked for thirty years in the public health service, in a sera and vaccines manufacturing company at Chełmska Street in Warsaw. She sent Ela to a special school next to her workplace at Czerniakowska Street 47. She didn’t have a clue that the school was opened owing to the efforts of Ewa and Roman Garlicki, Joanna’s parents. There were two classes, each for twelve children. The first such school of life in Warsaw.
In November 1983, Małgorzata Szajnert wrote about it for a monthly “Odra” in her reportage Drzewo Bakuri (The Bakuri Tree). Roman Garlicki told her at that time:
“A school in which disabled children were to acquire daily practical skills useful to live among people […]. Mothers created the curriculum. Teachers didn’t know how to fill it in as there were no “subjects”. My wife enumerated: how to get dressed according to the current weather, a visit at the post office, changing money, learning about street lights, what are vegetables”.
In 1970, Poland was the first country of the eastern block who acceded to the International League of Societies for the Mentally Handicapped with its seat in Brussels.
The Garlickis were prudent. They knew that such union protects. The associations for the blind and deaf in Poland survived because they belonged to international unions before war. The Committee gave rise to the Polish Association for Persons with Mental Handicap.
Thanks to the Garlickis, Rzepcia graduated the special school and found employment in a supported-employment enterprise. It was the committee which extorted creating such places from the authorities of that time. Eighteen-years old Ela was employed by “Electra” in Powsin.
Leokadia Rzepińska (with satisfaction): - She used to travel on her own to Powsin for many years. She used to make automotive wiring for FSO (Passenger Automobile Factory). She pulled off covers from wires which caused calluses on her hands. I used to teach her: do it slowly but precisely. The supervisor recognized later “Look, it’s Elka’s job”.
The mother doesn’t remember how long her daughter worked in “Elektra”. If it weren’t for these cables, she wouldn’t become so independent.
It is Easter in 1986. Joanna Garlicka is forty-three in this film. Turned on with a camera which was acquired by a miracle from the TV by the director, Krzysztof Żurawski. It is a twenty-minute private recording of a few moments after the death of Joanna’s father- Roman Garlicki.
- Auntie, I learned today that daddy passed away in the hospital - Joanna talks on the phone. The words are inaudible, her head bowed, the face isn’t visible. – It is hard to talk about it on the whole. When is the funeral? I don’t know when it is . I don’t know anything.
The camera records at random.
An off-screen voice:- Does her disability make it easier to come to terms with this death?
One of Joanna’s friends:- I haven’t realised yet what had happened. I think it will be a process when we begin to learn that Mr Garlicki passed away. I guess it is similar in Joasia’s case. I think it goes beyond the level of consciousness. There is something more to it - the questions of the bond and the emptiness which will begin to pervade.
A few people hang around Joanna’s one-hundred meter flat at Parkowa Street in Warsaw. Joanna reads aloud the obituary. She holds the newspaper very close to her eyes (she is short-sighted). The camera shows a plate with dumplings in the background.
“We announce in deep grief that Roman Garlicki, the founder and the great friend of our circle, the man who was always with us and provided us with his advice and help to the last of his days, passed away on the 17th of March. We would like to assure you of our deepest sympathy in your tragic loss, Joanna.” A signature: parents associated at the Committee on Children with Special Needs.
The specialists say that people with Down syndrome experience the death of close relatives not in a less but often in a more dramatic way than so called normal people. “The sphere which is completely neglected and even overlooked especially in Poland is the preparation process or rather the lack of it to the issue of dying, the death and mourning in case of families and mentally disabled people as well as the staff taking care of them”- writes Anna Firkowska-Mankiewicz.
Joanna has much luck in this aspect. The people who were chosen by her parents let her experience the mourning.
- I am worried - says Joanna looking carefully into the camera - that my dad wanted me to be different. Or wanted to have some other children. He wanted me to be a fully valuable human being with its own opinions, its own will so to say… He tried to bring me up in this spirit. I suppose he faced some difficulties…
Joanna grimaces and moves her lower lip to one side. She thinks intensively. She plays a detuned piano for a while. She plays from the score. The preparations for the funeral begin. Some women help Joanna to wear black clothes.
- I don’t like black colour – she opposes. I don’t want to wear all black. Nor to dress up in a special way. Modestly, modestly.
The camera registers when Joanna talks on the phone once again.
- I simply don’t know how I am going to survive all of this. I know that I have to but I am not able to think about in a calm way. I just need a lot of time for the would to heal. Really… I have to go on living.
After the funeral a few people sit at the big oval table. “Please, give me Lord the tears of the good thief from the cross which smell of heaven just the way dogs smell of spring when the death approaches” – they sing. Somebody plays the guitar. Somebody laughs. Joanna counts the plates. Eating her dinner, she breaks her plate by misfortune. Her eyes are scared. Nobody makes any remark. It is quite natural to break a plate. There are some candles on the table.
- Let’s pray that Joanna never remains alone on this earth.
Freeze frame. A shot from the funeral: Joanna kisses her father’s coffin. The end of film.
The employees of the social welfare home were scared when Miecio's mother was dying in her own bed in the room. They didn't have a clue how Mecio would react to the sudden loss of his mother. The mother and Miecio also had their own habits. They used to pray together. She used to get up at five o'clock in the morning and boil milk for her son.
- They were afraid that Miecio’s condition would get worse or he would break down – recollects Barbara Jaworska. They said that he attended the funeral but he rarely recollected his mother later on. He quickly recovered.
Miecio often visited Bajbaja's office. He used to embroider or cut the pay slips from the Social Security Office. He used to come with an embroidery frame and say:
- Look, Bajbaja. I don't have such colour. Will you buy me, please?
- Ok, I will buy you this embroidery thread tomorrow - used to promise Bajbaja. It calmed Mietek down.
The empty place after Mietek's mother was taken over by Mr Leszek. He was lazy and liked lying in the bed. It didn't bother Miecio because he was extremely caring, as it was stated by social workers. He can accost and help everybody. Mr Leszek died and his place was taken over by Mr Jerzy.
Miecio welcomed him with these words: - Hello, dude! He didn't mention Leszek anymore. Today he pushes Mr Jerzy's pushchair to help him to get to meals. The basket with all embroidery materials go along.
The mother has reincarnated.
Bogusia was remembered at the Occupational Therapy Workshops at Deotymy Street. She had a really old mother. A tall bony woman with her eyes fixed on her daughter, she is standing there in the photo.
Beata Śliwińska, the manager of the Occupational Therapy Workshops:
- It was a strong emotional relationship. Bogusia used to come to our workshops. Her dad passed away. She was taking over the old age and the weakness of her mother. She began to function worse and worse. At some point, the mother was unable to take care of her anymore. Such a person needs to be constantly reminded and to be supervised: close it, open it, pull it up, tie it… There is no force to do it anymore at an old age. Bogusia ended up in social welfare home. I visited her twice and she already became a different person. There was a limited contact with her. She behaved as if she didn’t recognize me. She collapsed - an old, dejected woman with dementia. I felt that the separation was the reason for that. She was derooted, torn away from the sources of life which were her mother and home. She died of longing within five months. Her mother died just after her.
Bogusia was forty-nine.
In 1982, Michael E. Thase, a professor of psychiatry conducted research on people with Down syndrome aged over forty-five. Almost half of them had fully developed dementia symptoms of Alzheimer’s type. These were accompanied by osteoporosis, incontinence, cataract, visual impairment, hearing loss, emotional distress and depression. Mentally disabled people somehow skip into the third period of their life. The disabled who are forty may battle against the problems of able-bodied who are sixty.
- Miecio used to go to the nearby church to attend the evening mass until this spring – says Barbara Jaworska. We stopped letting him go alone since he began to get lost and forget things. Once he didn’t come back and was wandering around the surrounding area. Our inmate found him and brought him home. Now he is supervised when he goes out.
- For instance, Rzepcia has been the best stained-glass painter for many years. She used to paint on glass in a beautiful way. She used to come on her own to the workshop from her place in Mokotów but at some point she started to get lost. As her mother is deaf, I gave her a piece of paper with my telephone number when she got lost for the first time and she began calling. For example, she took off at a wrong bus stop. She was given a lift by the police a few times and by a taxi driver once. It was some seven years ago and Ela was fifty-two at that time.
Finally, Rzepcia was taken straight from her home to Deotymy Street by a special bus. And she was given a lift back home as well. Yet, she would spend more and more time looking for her bag or being in the toilet.
- She would freeze like this over there for long periods of time. Next, she would wash her hands and put some hand cream on. Just like her mother taught her. She used to spend at least an hour putting on some jewellery and a watch. Beata Śliwińska tells about it with a smile because Rzepa is a cutie and everybody loved her. Still, the time when Ela was independent has gone irrevocably.
Śliwińska also noticed that people with Down syndrome get old rapidly:
- There is a moment of a breakdown and they are not the same people any more. The way they walk, physical ability… Looking from a perspective, a person who is fifty behaves as if he or she was seventy. They simply have less time.
Joanna’s father leaves a will before his death: “I ask you to help my daughter in all legal and administrative matters and to make a power of attorney for a person who is jointly determined by you and my daughter. I wish that your help […] takes account of her dignity and the right to decide about all matters which relate to her. If it turned out at some later time that any of you default on this obligation, I would like to ask to delegate the duties to some other person accepted by my daughter. All institutions are requested to support the efforts made by you.”
Camera registers Joanna washing dishes.
One of her best friends, a carer:
- She needs to have an ordered life. A structure around which she can revolve. Everything revolved around daddy until now but suddenly he is gone. There is not anybody to be helped, to cook dinner for. Suddenly, everything lost its sense.
An off camera voice:- What kind of care do you need the most? In what sense?
- I what sense? In all sense! – Joanna drinks some coffee, bows her head and smiles. How should I call it- some emotional support first of all and besides how should I get dressed more or less in a decent and elegant way…
- Can’t you get dressed on your own?
- Yes, I can! When it comes to dirty and torn things- I cannot make anything of it. I need somebody to be with me especially now. I simply need it… I very often have my head in the clouds and somebody needs to bring me back down to earth.
After her father’s death, Joanna had full right to decide on her own fate. She inherited a flat at Parkowa Street and she got old surrounded by people who became an arch for her.
A carer: - I noticed that Joanna became very attached to me but I didn’t not know how long I would stay. She reacted: “You are mine. Mine forever!”
“For the time being I will stay with your for a year. I do not know what will happen next.”
“Come on!” Joanna replies.
“What if I want to get marry?”
“Come on, Anna, it is impossible!”
“It is possible. Everything is possible”
After the conversation Anna went to the kitchen. Joanna followed her:
- All right. You can get marry but it has to be an actor. And I will bring up your children.
Anna lived with Joanna for 3 years. Other befriended people took care of her later on making the first home named “arch” in Poland which was invented by Jean Vanier.
Urszula Koziarska recollects:
There was a short moment when there was nobody to live with her and Joasia was taken to the social welfare home . She used to walk with crutches but she was getting by. They put her there into the wheel chair, put on a diaper and that was it. Consequently, she retarded a few years. We had to teach her everything from the scratch. It was a nightmare! She even refused to bathe. Apparently, she was treated in a brutal way there .
A leaf of lettuce
There are sixty thousand people with Down syndrome in Poland. Despite many forms of help there is not any systemic care for elderly people who are mentally disabled.
Ela had her little room in the house with a bed and a dressing table. There are a few toys left which her mother keeps as if Ela was about to come back to her any time. Leokadia Rzepińska lived with her daughter in one room in the social welfare home for a few months. Just to help Ela to get accustomed to the new conditions. Yet, Rzepcia got old faster than her mother and couldn't keep pace with the still lively eighty-two years old lady.
- She used to shout at her all the time. Ela's mother was even more unbearable at the canteen – tells the director of the social welfare home, sister Cordiana. She used to force-feed the poor Ela as if the daughter's life depended on it. In fact, Ela eats in her own slow pace and we always control so that she eats enough.
- They gave her a leaf of lettuce - briddles Leokadia. What was she to do with a leaf of lettuce? So I helped her to cut it. They would chase me off: your plate is over there! She was supposed to sit there until she eats everything but I noticed four times the mean woman (speaking about the domestic assistant) taking Ela's plate and throwing it away. Does it harm her that Ela sits over her plate a little longer? She did it four times!
Małgorzata Druś, the manager of the social welfare home at Wójtowska Street where Miecio lives, explains it the following way:
- The old generation of mothers used to serve their children. They existed thanks to their children. They very often had a feeling that they did not face up to the role of a wife because their husbands usually walked away or didn't take part in the upbringing of their children. Neither did they face up to the role of a mother as their children were born disabled. They directed all their forces to upbring their children imposing their will on them. After all, each human being with Down syndrome has its character, needs and desires. They are not people without will! They get angry, curse, feel jealousy or love just like us. They are transparent in all that. They do not hide or pretend. When I got into hot water with a certain Kaśka, she hit me so hard that I had bruises for four days. However, mothers often overwhelm these children and suffer even more than the children when they are parted. It was observed in the social welfare home that mum overwhelms Ela with her love.
- They told me that I shout at her – complains Leokadia. - Yet, she is deaf and I am deaf so the conversations sounds like this.
The mother gave commands to Ela, just the way she did at home: “Take off your pants, get into the tub!” And they say: “Too loud, too loud! You shout at her!”
- Ela used to run away from the room to another toilet just to sit there, because she liked it. She used to say: “I am afraid of my mum.” - Sister Kordiana smiles because she knows that all this happens because of strong bonds and love. - We finally came up with the conclusion that they cannot live together. When her mum went back home she used to come back here for an inspection. “You have put her tights on. That's good because it is cold.” Step by step, she came to the conclusion that we could take care of her daughter well enough. If Ela’s mum is not able to live on her own anymore, we will take her in here. Yet, they will live on separate floors.
I accompanied a few people with Down syndrome to heaven, so to speak - says Urszula Koziarska. Piotrus, aged 50, used to tell him mum “Don't cry”.
There was Kasia who had serious problems with her heart and suffered all her life. At some point, she stopped speaking at all. When another person with Down syndrome had been in her bed for too long and we all knew that she was dying, Kasia used to feed her and give her to something drink for the period of two months before the other person's death. Then, she used to turn away from the bed and mime that her tears were dropping. She had a deep consciousness of death. A short time later, she had a circulatory collapse and she died. She was a little over forty. Joasia was dying for a few months. She was extremely patient in all that. Ursula remembers that Kasia loved books so even when they were not sure if she could see, she had to have a few books just next to her. Just to leaf them through.
- We supported the person who lived with her. We used to collect money to employ another professional to help us. In the last stage of passing away we managed to arrange some hospice care at home. Thus, we accompanied her in her death. It was a great lesson of suffering for all of us.
After Joanna's death, her friends wrote: “She didn't have great achievements, she didn't acquire academic titles, she didn't write any books, she didn't make a fortune. She achieved much more in her life: she won many people's hearts.”
Joanna was sixty-eight at her death.
Today, the “Arche” community has its seat at Parkowa Street. It was Joanna's decision to provide disabled people and their families with support in her flat. Everything remained the same old way there. There is a photo of Ewa Garlicka dressed in an uniform on the chest of drawers behind a pane, the same books on the bookshelves, a big round table in the middle at which Joanna broke a plate during her father’s funeral. There is also a piano and some old albums with photos. In the photo there is a little girl with a sullen face who is holding the hand of a tall man in glasses.
Miecio is reaching old age surrounded with kind people at Wójtowska Street. He visits Bajbaja to get some sweets or a cookie. Sometimes, he gets some sirloin from her because he likes it so much.
- Do you have some more for my roommate? - he asks each time worrying that he will not be able to share with Jerzy.
- Yes, I do – always answers Bajbaja.
Leokada will never find her inner peace after having given away her daughter to the social welfare home. Urszula Koziarska states that mothers who live in such a symbiotic way with their children cannot live anymore in a normal way when the child leaves. Even the death of their child does not give them freedom.
Just “when our children turn grey, when we leave for good, the inscription won’t matter nor the magnolia swaying a meter above”, as it was sung by Basia Stępniak-Wilk in the song “Magnolias”.
- Is there anything else that would make you happy, madame Leokadia? – I ask Ela’s mother leaving her flat at Bachmacka Street.
The woman thinks for a while.
- You know, Ela used to warm up my bed. She would stay under the duvet and wait for me to come to sleep. Then, she used to go to her room. She is such a good kid… It would make me happy if she didn’t stay alone. I ask God to let her die first. Then we will both find inner peace. I don’t need anything else.
Translation: Joanna Urbanowicz