A Slave’s Beer

The mother of a disabled child dependent on life-supporting equipment has been recently arrested in Poland. She failed to notice that the tube connecting the child to the machine had slipped away, the direct cause of her child’s death. Another mother taking care of her child in a similar state went to a shop and put in her basket a beer, among other things. That did not go unnoticed and a watchful neighbour scolded the uncaring mother straight away for going shopping for alcohol, instead of minding her child. Defending herself, she explained that the beer was for someone else.

Yet another mother maintains a blog where she describes her daily struggle aiming to ensure proper care for her bed-bound child. She eloquently reports on her various adventures featuring individuals and institutions in principle meant to be professional support for parents of children with considerable disability yet in practice failing to deliver or providing support that is far from sufficient for the family to operate normally. So conceived, that social policy – or its travesty, if you will – dooms that mother and ones like herself to giving up entirely on themselves, their own lives, not just professional but also private, as well as all pleasures enjoyed by others like fashion, culture, holidaymaking, and drinking a beer. The blogger mother offers her unambiguous interpretation of this reality: it is modern slavery sanctioned by the Polish state. She is right.

It was she and other mothers of disabled children that the Polish president called heroines during his address on the occasion of 3 May Constitution Day. Referring to the International Day of Persons with Disabilities, his spouse declared that “it is worthwhile to help these special people”. In the case of children hooked up permanently to medical equipment such help is delivered mainly by the hands of their mothers. Lofty declarations delivered on the occasion of this or that festivity are not accompanied by any specific ideas on the creation of long-term and well-financed systems to support mothers’ needs related to the care they provide for disabled children. Although such systems, based on help rendered by personal assistants, are known and implemented for years as part of social policies across Europe, we in Poland limit ourselves to beautiful words which are usually all that the mothers can hope for. Sometimes, such words are needed as a spark that fuels change. Empty declarations, however, amplify frustration, as they have been spoken so many times before by so many politicians of so many colours on so many occasions that the sound of such cliched phrases may be plain nauseating.

Yet politicians may continue that way, safe in the knowledge that this or that female slave  will not go out and protest, demanding a system of support, asking for assistants, explaining that her on-duty time at the side of her disabled child equals labour. Because a slave is always bound. Day and night, she holds a vigil next to her child, looks after him/her and turns him/her on the other side. Sometimes, she is replaced by her husband, who has to work to provide for both the child and the slave. Yet sometimes the husband leaves her because he wants to live a different life or cannot take it any longer. And she has to remain at that post of hers, to persist regardless. She is unbreakable, determined and unwaveringly loving, after all it is all about her own and her child’s dignity.
It is exactly these mothers’ feelings and vital forces that are exploited by politicians of each level and each colour and ideologues who inspire them. It is at the expense of these mothers and their slave labour that the “system of support” for children dependent on assistance of others persists. Indeed, they are the famed archetypal Polish Mothers – doting and ready to make sacrifices – of whom such politicians and many more other people expect the highest form of heroism: the decision to give birth to a child with such considerable disability and then taking care of him/her throughout her entire live. As this expectation ties up with the perception of women in Polish society, it is effortless for these people to express that expectation. Little wonder then that according to them no slave is allowed to drink a single beer. What will people say? She has a very sick child but succumbs to pleasures.

The slave herself senses and maybe even accepts it, which explains why she says that she has bought the beer not for herself. She needs to explain herself to this or that neighbour, who under the applicable model of culture is free to go and drink himself unconscious with his mates, then curse someone in the street, and give his wife hell at home quarrelling with her. He is free to do all that, yet that very same neighbour has the moral right or even civic obligation to reproach the Polish Mother for a single beer. He feels a better human being then.
When such a mother fails to see or rather forgets to see something, no one will help her out. Who would like to take responsibility when there is a seriously disabled child in the background? Who would like to face problems related to it? When she fails to see, possibly due to exhaustion, that her child’s tube has slipped and the worst happens, a prosecutor will come and the police and she will be simply arrested.

Which is why the slave is always alone left to her own devices. Vigilant all the time, she has got no female friends, close or less close. Sometimes, provided she still has the strength to write her blog entries, someone will like them on Facebook, someone will call, yet less often as a phone call takes more effort. Consequently, the slave remains alone with her child and her thoughts. As she is unable to talk to that child, she thinks. Most frequently, her thoughts revolve around the future of her son or daughter. Sometimes, she is willing to share them on her blog and so we know exactly what such thoughts represent: what if she or her husband becomes ill or old, lose their job, or die. What will happen with her child then?

Days and months pass by. Come another festivity, and president will say something about her heroism again. Days and months pass by, come another festivity and another politician will say something nice about her. Days and months pass by, and the mother is not strong and healthy any more. Years pass by, this or that blog disappears. In its place, others open: edited by modern slaves, Polish Mothers.

Ilustrated by Lech Kolasiński
Translated by Mikołaj Sekrecki

At a foil-covered table

In memory of Julek

 In my contribution as an Ashoka Fellow delivered in Bucharest, I recalled my best decisions to date. One of them was related to my persistent desire to attend an ordinary school and pursue journalistic studies. I was telling the audience that back then everybody around me laughed the idea off saying that I would be overwhelmed and discriminated against in a standard school and that I would not pass any entrance test to become a university student. They were also saying that after the special-needs school a bright future awaited me as I would earn a lot practising professions that were good for blind persons. Such good professions were ones stereotypically perceived as suited for non-sighted individuals: piano tuning and massage.
I often remember it when I get a massage these days. It is very pleasant to receive that service but I would not like at all to offer it to someone. And it seems to me that, willingness or lack of it aside, I did not have enough strength or hand structure to deliver. Still, those were the only suggested jobs society offered. They failed to meet any of my expectations and did not even come close to dreams. When everyone around me, however, repeatedly said that what I did was wrong, my choice was wrong, I, despite my stubbornness, thought about asking someone mature about it.
There was a man who never laughed at any dilemmas but listened patiently and then offered some advice. His name was Julek Wójcik. I was 15 and he was 60.
His life was no bed of roses. He had been born in a village near Lviv and lost sight very early on at a tender age of three so no visual sensations could reach him. Then the war broke out. I remember his recollection of many beautiful aeroplanes appearing in the sky. His sisters cried: “Julek, how beautiful they are,” yet soon after the planes began to drop bombs and everyone ran and hid away forgetting about Julek.
After the war, he moved with the family to Krakow. That was an austere life in communist Poland and for a blind boy the only place was in a special-needs school. So he learnt there one of the professions society assigned for blind persons and later tuned those grand pianos, he would also play various instruments a bit. No, not like Stevie Wonder and he was well aware of it, he would play them in Julek’s style and derived pleasure from it: his sort of clubbing, as I would call it today, which I enjoyed.
For the first time, I met him during a trip to the Jurassic Upland in the 1970s. He was a member of the Association for the Blind, like my father, and during that trip Julek, over the bonfire, would play the accordion, which we incorrectly called harmonica or used the Russian term harmoshka. He was liked by everybody as he told jokes and laughed a lot. As a child, I remembered his sunny face and early bald patch. I probably thought back then that he was very old and I would not have imagined that we would soon become mates for many years. So I knew his face well. He could only imagine mine. He would sometimes touch people’s faces in order to be able to imagine them better. Some female friends liked it a lot, and some other did not at all. Now, I understand them both, yet facial features were important to him. He would say later: “That Ewa has got such a delicate face and when she smiles, her features match her chirping perfectly. She must be a sensitive girl”. And he loved sensitive ones, intellectuals, those searching for meaning. When able to offer them some advice, he felt needed.
When I lost sight, I immediately addressed my initial questions regarding the new situation to him, and I would always receive answers, better or worse, but I knew I could count on them. He was the only one to support me when I decided to attend a standard school, saying: “This is what you feel and this is what you must do, you must be among other people, do it, something I could not, the world is beautiful and do not close yourself in with people similar to you.”
Later, when it turned out how many new friends I had and when they all learnt about my unique mate, much liked by youngsters, crowds would follow me to meet him. We talked about life, much about music and, obviously, our crushes as well as serious love affairs. Knowledgeably, he would advise us in such matters, too. At Julek’s, there was always a glass of something good at hand, tea and cake. Today, I think he was a connoisseur, although in times like those we would not slobber over tiramisu as we did not know something by that name existed, but had successive doses of biscuits in transparent foil like chocolate-chip cookies (just entering the Polish market as capitalism was making headway in the country).
Years went by, life was rolling on. Julek would often listen to the radio, to the music I played and we disagreed over goth rock because above all he cherished harmony, with chords balanced like in Vivaldi’s music, while I started to enjoy crazy stuff. Yet we liked Jarre in equal measure.
– Do you remember how you feared that school and now you bring along someone attending it every week – he reminded me once. Those schools for the blind are bleeding ghettoes and it is good that you got away from it and attended your Eleventh and that you went on to study at university.
At university and afterwards as an adult, I would call him often asking about things like in the old days. Those were not anymore matters, choices and decisions matching that first and most important one, but I always wanted to have a chat, hear his sunny voice, for example saying something on how interesting it was to meet new people, visit a new country and get familiar with its culture. After my first time in the States where I brought Ajzik along, I went to see Julek immediately although at first Ajziczek was unruly, to put it mildly, and Julek was afraid of dogs having been seriously beaten in his childhood. Still, they became friends soon as Julek was simply each creature’s good mate.
I sometimes listen to Jarre’s Oxygene and it is typically with that music playing that I think of him. I have such a great Mobile Fidelity issue on gold, with extraordinary sound on tube amps. Julek might have been born in an era of tube players, but never experienced music played from a CD or a vinyl record by means of a good tube amplifier. I am sure he would be enchanted with Jarre’s music sounding this way or Oldfield’s Tubular Bells, which he liked very much, too, or that Vivaldi with ideally balanced chords.
If today I sat with him at his table, covered with a simple cloth or at the kitchen one covered simply with a foil tablecloth, I would produce Crema Ovieja or maybe some good Porto. We would play a record with fado, I wonder whether he would like it, music of sadness, love and longing.
Maybe I would sometimes invite Julek for a tiramisu to Aqua e Vino or to the Indian place at Mikołajska Street, although he was no great fan of spicy food, so maybe sushi would be to his liking as he enjoyed fish?
Or maybe he would not like all that and we would just sit again at this or that table, drinking thin tea brewed in bags, binging on chocolate-chip cookies and arguing whether it is better to look at the stars and horizon or to draw the curtains. Then we would listen to some CD I would have brought with me played on his bulky hi-fi set called Condor. Indeed, that might have been enough for us and we would have been together again, happy that it is possible.

Translated by Mikołaj Sekrecki