The "social" contract
A worrying phone call this morning with a Ukrainian mother of a handicapped adult son from occupied Kherson region, now in Vorarlberg. Brief update from the arrival center. Recommended reading.
It always starts with a Telegram message. Yesterday was no exception. I was fairly depressed, staring at a pile of 21 empty envelopes, not knowing how I was going to fill them anytime soon, and having just tried to provide local psychological resources who speak Ukrainian or Russian to a mother of an adult son. The family are medical evacuees, meaning the Austrian federal government promised surgery and medical care (the son, early 20s, was blinded in a rocket attack). But they have been living in temporary accommodation in a hostel, and are waiting. The waiting is hard. Mom asks for help so that she can better help her son manage. She wants to speak to a neutral party, and isn’t keen to speak to someone on site (she fears getting into trouble). I collect as many resources as I can but you know how it is: you forward a bunch of screenshots of posters with emails, landlines, and office hours, and you know what she really wants is someone named Olha whom she can call right now on her mobile. The mom was grateful, and she did say she got an appointment with a Ukrainian-speaking psychologist in Vienna soon. You have to ask a village, in the hope that one of many recommended options actually works out. And of course, in mental health, time is truly of the essence.
So that was my day yesterday when I receive a message over Telegram from a refugee asking me to read a post from the “big” Telegram group (nationwide, nearly 20,000 participants). A local volunteer from Vorarlberg (I am intentionally keeping all names and places anonymous other than naming the federal region of Austria because of legal action already ongoing, in the hope a local journalist might read this and then properly report on it) wrote in the big chat:
“Maybe, someone could tell me, where one can get help defending one’s rights. NGO (he named, I am not) wants to take a child from a mother and grandmother, because they do not agree to him undergoing an operation. An exam in Tirol showed that the operation is not necessary. But the family is still being threatened by the doctor and NGO that they may perform the operation anyway, they filed a court case. The court said yesterday that it will nominate a medical guardian (who, I assume, will agree to the operation). They are not recognizing the mother’s rights as guardian, because they are from Ukraine (the child in question is an adult). That’s in short. The BBU said they cannot help. What can they do in such a situation? If you have specific advice, please write me directly. Thanks. Vorarlberg.”
Of course when I read something like this, I cannot look away. I also know there are many sides to every story. So I do the following. First, I notify a group chat I am a part of with volunteers from across Austria and some employees of some government bodies working with refugees. I present it as something of concern and start a discussion. For me it is of critical importance not to look away, even if we don’t know all the details. Next, I ask to speak to the mother directly, because I want firsthand information. The volunteer passes me her phone number, and this morning we speak by phone. I will share now with you what she told me by phone this morning, in the hope that it draws attention to a concerning situation, and with her permission. I am not using names or cities. I, obviously, have not heard the official side of the story, I do not know what arguments the doctor and NGO are using.
Today, as I write this, a representative from social services which provides guardians for handicapped adults is supposed to be visiting the family with a translator. The mother really hoped her own translator, a local volunteer originally from Ukraine, would also be able to come.
The mother begins to tell me their story. They are a family of three: she, her mother, and her 31 year old son who has a genetic condition and is in a wheelchair and is physically, she says, the size of a child except he has a large abdomen. The family fled occupied territory in Kherson region, first to Romania where they stayed for a month, and then came to Austria. They took several different buses to evacuate, and during each part of the journey her son suffered from red, swollen legs from all the hours of travel. They have been in a town in Vorarlberg for six months now. They were given a nice small apartment which is managed by the NGO.
The mother says as soon as they arrived they were given so many “termin” which is German for “appointments” and in this case she is referring to medical appointments. The son was at one point sent by ambulance to a hospital when the family was living in what she refers to as a refugee camp in the west of Austria waiting for their housing assignment. The staff looked at his legs, and discharged him. Mother says once they stopped moving from bus to bus, his legs got better. He is a small weight for an adult and looks like a child, but this is to be expected — during the occupation he lost weight as it wasn’t possible to eat a balanced diet. Mother explains she is in constant touch with her son’s team of doctors from Ukraine, who have known the family and treated them for years.
In January, a local doctor (some kind of specialist) suggests mother and son check in to an in-patient program in a local hospital to offer him “proteins” to help him put on some weight. Tests were performed, this was done, and the doctor expressed concern an operation was needed on his stomach. Mother and son were sent to Tirol for an examination there, as there was no available appointment in Vorarlberg at that time. In Tirol, the family was told by doctors there that an operation was not necessary, and the mother says she has these medical records in her possession.
Back in Vorarlberg, the original doctor did not agree with the recommendation from Tirol, and insisted that an operation must take place. The mother says when she asked for the Vorarlberg medical records, they were not released. She also says when she asked to find a family doctor, this specialist told her “Austria has spent enough on you, you don’t need to waste anyone’s time…” message being: only I know what is good for your son. The doctor tells the mother an appointment has been made in Vorarlberg for an operation for her son.
The mother calls and cancels the appointment, as she heard from the doctors in Tirol that such an operation is not necessary.
Someone from the NGO also intervenes at this point, says, apparently to the mother, you either agree to the operation, or the doctor can go to court.
The mother refuses to sign, and the doctor goes to court, in an attempt to take the mother’s rights to make medical decisions concerning her son away.
Mother says, “We fled war and we just wanted to live in peace here. We cannot leave, we don’t have anywhere else to go.”
Today, as I write this, a social worker from an orginizaton that deals with, as I understand, guardianship for handicapped adults, is due to meet the family with a translator. The mother explains this local doctor wants to take her rights away to make decisions abut her son’s medical care.
But why? I ask. The mother says: when the doctor first saw him, she told me he had two to three weeks to live.
And? Well that wasn’t true, the mother explains.
Did the doctors in Tirol say that? No. They said nothing about him being in danger of dying now.
Mother adds that when they were released from hospital in Vorarlberg, and she asked for more protein to be prescribed, what had helped her son in hospital, this request was ignored, and in the end a local volunteer ordered it on Amazon instead. Similar requests for a new wheelchair made with the NGO were also not followed up on (mother says she and her son fell from the train platform and the old wheelchair was damaged in the fall).
I explain to the mother who I am, what I can and cannot do, and promise to sent a grocery card, which I will do, later today.
I am fully aware there are always many sides to any story like this, but I see it in the broader context of some members of Austrian society not taking the Ukrainians at face value, not treating them with the same respect they would treat local patients, not respecting the expertise or diagnoses made by doctors in Ukraine.
And this family then represents another huge issue: the millions and millions of Ukrainians who depend on small state handouts to survive. Who are extremely vulnerable. They come to Europe seeking protection, and find themselves embroiled in legal proceedings they do not understand which come seemingly out of nowhere. I took an interest not knowing this is about an adult child. But does it matter? I know cases where Ukrainian children (under 18) have been taking out of their parents’ care here. I have heard how fast it happened. Now imagine you have been caring for 31 years for your handicapped son in close-to-poverty conditions and then you end up in a new country because the Russian army invades your hometown, and that new country wants to take away your right to make medical decisions on behalf of your son? Can you imagine? I cannot.
Therefore I truly hope a local journalist or authority will read this and take a closer look at this whole very concerning situation. As always, I can provide specific details via private message (my Twitter is @tanjamaier17).
This morning I was back at the arrival center. I met a man from Mariupol and a woman from Bucha. The dad from Mariupol also told me about Poland. He said there are so many Ukrainians and many of them are falling victim to doing odd jobs and then not getting paid. He told me about an entire building site where 20 Ukrainian men were just told to get lost and here is a bus ticket rather than paying them for the work they performed. This is one reason why he came to Austria, even after I explained the drama about actually trying to work when you take a room from the state. He told me he wants to feed his family and wants to work and doesn’t want any handouts but just needs an address to get registered. Wife and kids waiting in Poland for him to give the signal it’s ok to come. So sad and so stupid. This bureaucracy is bad for the economy and it is bad for refugees. The only people it is good for are the minions it employs on nice state salaries doing minimal work with little concern for speed nor accuracy.
This afternoon I will visit a project arranged by Russian- and Ukrainian-speaking volunteers which specifically helps women and children in Vienna. I will also try to do more marketing of our upcoming book & bake sale on Sunday, May 7. The marketing part is harder than I thought! I worry, will anyone come? Will they buy anything? I keep telling myself we will bring all leftover baked goods to the hotels and dorms in Vienna housing hundreds of Ukrainians. I know the addresses. I will donate any leftover books. I am trying to go through donations ahead of time and not put out for sale anything un-sellable. I hope to present a nice, edited selection. In my head it is all great, I just hope it can turn out the same way in practice.
This week I would like to recommend some reading that highlights broader social issues in Ukraine which are constantly on the back of my mind. I keep thinking if Europe is shutting its doors, and Ukraine starts cutting back on social payments, raising energy prices, that is a recipe for social disaster. You would think keeping Ukrainians living in “safe” parts of Ukraine would be far preferable to the amount of money that has to be spent by EU governments to provide safe, new housing here, and it has a net benefit for Ukraine’s economy, which also is in desperate need of normal economic activity. Every penny spent outside of Ukraine is also tax revenues Ukraine doesn’t see. And yet:
Ukraine is reforming its welfare system as the cost of war rises
A very well-reported piece on the ethically very touchy and complicated subject of legal surrogacy in Ukraine:
Ukraine surrogates fear ban on births for foreigners
Evacuation of the elderly and vulnerable from Donbas who don’t want to leave the only world they’ve ever known. Video in Russian.
Finally, a Substack recommendation. Tim Mak has been doing wonderful reporting from Ukraine for NPR, but was recently laid off in the NPR cuts. He has decided to stay in Ukraine and continue reporting: The Counteroffensive with Tim Mak.
In other news, Russia’s economy is starting to crack from a shrinking labor force and the impact of sanctions, Russia is handing out draft notices in the two capitals, and a Moscow-based cake baker was arrested for her anti-war frostings.
I don’t want to comment on the military stuff, other than to say it looks like Bakhmut is nearly gone, and something big is in the works and soon. Meanwhile:
Albina, a tireless volunteer in Tirol, writes: “I was just now with a Ukrainian woman from Kharkiv at the doctor. A wonderful, smart and brave woman. Her only son is 23 and on the front. She is taking strong anti-depressants, she is still crying day and night. So much pain…”
There are videos circulating “Ukrainian” Telegram of Ukraine’s own army recruiters overstepping during their practice of issuing draft summons. One stuck with me: a nice restaurant, Dnipro. The men in camouflage walk in and want to hand out summons there on the spot to men dining. The owner of the restaurant, a tough blonde, takes one look at them and says “You get out of here. What gives you the right to kill what’s left of my business?”.
The mood is not good. I can feel the tensions between those making the biggest sacrifices imaginable and those only looking out for themselves and their own. I suppose this has something that existed ever since war was invented, that the poor send their boys to die and the rich read about it in newspapers sitting from positions of comfort. With a few, notable exceptions, of course.
Then I open the news this morning of the horrible bomb raids overnight, and think what happens now, what if we receive another wave of refugees just as things warm up and heat up on the battlefields, just when Europe is hanging up its “out to lunch” signs. What then?