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