By Anna Gmiterek-Zabłocka, TOK FM (tekst dostępny również w wersji polskiej)
Last month’s constitutional court ruling – which outlaws the termination of foetuses in cases where serious birth defects are diagnosed – has sparked a renewed conflict over abortion in Poland.
Hundreds of thousands of people have joined mass protests against the ruling, and opinion polls show that a large majority of the public disagree with the court’s decision. But many conservatives – including government ministers and the president – argue that what they call “eugenic abortions” of unborn children diagnosed with disabilities are unacceptable.
However, some parents of disabled children have themselves joined the protests. They have also disputed the government’s claim that there is an effective state system of welfare and other support for disabled people and their careers.
Just one medical error
Hania is 16 and suffers from severe spastic quadriplegia. She cannot talk, walk, or play like other children. “She is our beloved daughter, although she turned our lives upside down,” says her mother, Kasia Łukasiewicz.
Hania was the child Kasia and her husband Karol had longed for, but the delivery was delayed, resulting in major complications. “The doctor who was supposed to deliver her gave me medication and went to get her hair cut,” Kasia tells us.
In 2012, a court confirmed that a medical error had taken place. But that will not make Hania healthy. The Łukasiewiczes’ lives began to revolve around their daughter: doctor’s appointments, physiotherapy and treatments. This meant huge costs, but also a great deal of time.
Hania Łukasiewicz (Photo: Oswoić Los Foundation)
Kasia says that the family has not slept through a single night in 16 years. Hania struggles to sleep and wakes up frequently, screaming loudly.
State support is minimal. The family feel they have been left alone.
“I call it ‘scraps’ – a small subsidy for a rehabilitation stay or treatment. There is no single, comprehensive, systemic approach to people with disabilities,” Kasia says.
There are many problems: lack of rehabilitation equipment, medication, access to the latest treatments, regular psychological support and special needs assistants.
Another problem Kasia points to is the lack of so-called respite care for parents. Parents are with their child non-stop. If they don’t have help from family, even going to the shop is a problem.
“Sometimes I ask myself if a disabled child has to die for parents in Poland to be able to rest. Is it strange that we want to live normally?” Kasia wrote in a newspaper column.
“Looking after a disabled person is often 24-hour, physically exhausting work. For that work we expect respect and remuneration,” Kasia wrote.
In 2020, she set up the Oswoić Los (“Embrace your fate”) foundation, which supports children and their parents. She knew that since the state was not doing its job, she had to take matters into her own hands and try to help other parents.
“For life”
In 2016, the Polish parliament adopted the “For life” law. It guaranteed the parents of children with a recognised disability a one-off benefit amounting to 4,000 zloty (€890), priority health benefits, preferential access to medication, and rehabilitation subsidies.
The programme was introduced shortly after mass protests had forced the ruling conservative Law and Justice (PiS) party to back away from a proposal to restrict the abortion law, and amid accusations that it is only interested in restricting women’s reproductive rights, including the right to abortion when the foetus has serious defects, leaving the families of disabled children without any care or support.
“The Law and Justice government was the first to take such efficient and effective measures for people with disabilities,” Marlena Maląg, the minister for family and social policy, said recently in parliament. “We are designating a total of 14 billion zloty for the Solidarity Fund programmes for 2019 and this year.”
But parents of disabled children argue that many of the measures exist only on paper, or that formalities get in the way. This is the case with, for example, the respite care envisaged by the “For life” legislation. Carers of people with disabilities are entitled to 240 hours of such care this year – but parents and activists say this is a fiction.
Parents of disabled children occupying parliament, demanding increase in state support. Govt introduced rewards for parents who give birth to disabled child instead of having abortion, "but couldn't care less about what happens for the rest of their lives" https://t.co/LSa2mTxI30
— Notes from Poland 🇵🇱 (@notesfrompoland) April 27, 2018
“There is a lack of qualified personnel, specialists who could provide that care,” says Sylwia Mądra of the Chcemy całego życia (“We want a full life”) initiative. For a respite carer to stay with a child on the autism spectrum, for example, that person would first need to know how the child might act, how to treat him or her, and how to help in a difficult situation.
“In Poland there is no such ‘bespoke’ support,” says Mądra. Money is another problem. Small municipalities in particular lack the funds and simply do not offer such services, Mądra adds.
And then there is the question of timetables. If a parent needs to go to the doctor or visit their own sick parent, for example, they have to fill in an application and wait for a response. Activists say that such decisions need to be immediate if they are to be really helpful.
A daily struggle
Olinek is four years old and was born premature with cerebral palsy and kidney defects, despite seven in utero operations before his birth after the kidney problem was detected. He is unable to walk and recently began using a wheelchair. For a long time he could not talk, but began to do so lately thanks to rehabilitation and support. He is a cheerful, smiling boy.
His parents, Agnieszka Jóźwicka and her husband Jakub, had worked for a private television channel, making good money. They took holidays abroad and went to the cinema and theatre, and saved up to buy their dream flat in central Warsaw.
The birth of their son forced them to completely reorganise their lives, moving in with Agnieszka’s parents. The main reason? Help and support, but also financial issues, because rehabilitation for a disabled child is extremely expensive.
Olinek with his parents (Photo: family archive)
“State support? Pitiful!” Jakub says with a laugh. By law, Olinek is entitled to two hours’ rehabilitation per week paid for by the state.
But he needs rehabilitation every day, so Agnieszka and Jakub pay for it out of their own pockets, at an average cost of 150-200 zloty per hour. They also buy the equipment themselves.
“The next issue is rehabilitation stays. One stay costs around 5-6,000 zloty. The state isn’t up to the task here either, and we have to pay ourselves,” say the Jóźwickis.
How do they cope? They have kept their outgoings to a minimum – renting their flat out and living with Agnieszka’s parents, as well as no longer travelling or going to cinemas and restaurants.
One way they raise money is a very popular method for such families in Poland. Each taxpayer can designate a deserving recipient on their tax return and choose to give 1% of their taxes to that person or organisation.
The family have also had another idea: online auctions. Realising that every zloty counts, they called upon their well-known contacts from their TV work. People bought gifts donated by these actors, presenters and celebrities. They also sell preserves made by Olinek’s grandmother.
They have no doubt that the Polish state is not doing its job with helping people, which is why families take matters into their own hands to secure a better future for their children.
Olinek’s parents are dismissive of the “For life” programme. “It’s a joke,” they say. “In Poland there is no chance of systemic support for families like ours. What is available just a substitute for support.”
Another problem is that, to even get the money, all documents must be submitted before the child’s first birthday – an age when some have not yet received a diagnosis.
“Accessibility plus”
In 2012, Poland ratified the UN Convention on the Rights of Persons with Disabilities. Yet there is a huge problem with abiding by it. In 2018, the UN committee gave the Polish government guidelines to implement.
These included introducing personal assistants for disabled people (there are still very few around) and abandoning the current structure of care homes – many experts say that these gargantuan institutions can be treated as storage facilities.
The UN committee also made it a priority to prevent discrimination against women with disabilities and improve their situation. Among the problems faced by disabled women are access to legal abortion and difficulties with seeing a gynaecologist for wheelchair users. They are also very often victims of violence.
But the committee did praise Poland for the “Accessibility plus” act, which guaranteed equal access for disabled people to various facilities and removal of architectural barriers. It also entailed communicational accessibility – placing infokiosk machines in administration offices so that a blind person would know where to go and how to get around the building.
“A very demanding journey”
Tymek is 17, on the autistic spectrum, and has an intellectual disability. For the first years of his life, his parents thought he was developing very well. He quickly began to talk and recited verses that he learned off by heart in an instant. But later he started to make mistakes, get muddled and repeat himself.
When Tymek was five, his parents were given a diagnosis. The psychiatrist who issued it advised his mother, Urszula Kubicka-Formela, to give up work and look after her child. She didn’t know what this meant in practice, or where to go for help.
Despairing and feeling helpless, she looked for information online. She only had her husband, loved ones, and close friend for support. The state provided only minimal help.
Tymek went first to preschool, then to primary school. His mother was with him the whole time. In the meantime, there were more diagnoses, therapy sessions, further doctors and “miracle workers”. In the end, when Tymek’s parents noticed him biting his nails every time he got into the car, they began to realise what a huge stress this was for him. They decided to let it go, and that the most important thing was for him to feel happy and safe.
As her son gets older, Urszula doesn’t know what will happen next. According to Polish law, until the age of 24 he can go to school. And then? “Poland doesn’t have support for adults on the autism spectrum,” she says.
Care homes and occupational therapy workshops often do not want to accept people with autism. “There are usually no places, long waiting lists; mostly people who don’t cause major problems and are good ‘prospects’ are accepted,” says Urszula.
She also notes that Poland has no respite care for parents of children on the spectrum. “I look after Tynek with my husband, but there are also families where there is only the mum. What then? How is she supposed to see a doctor? Who should she leave the child with? These are everyday dilemmas and quandaries.”
Another problem is the lack of training flats for adults with autism. “They are necessary, for example, for people on the spectrum to get used to not having their parents around and to have the chance to become independent,” Urszula tells us.
She also mentions parents’ enormous concerns about what will happen to their children when they are not there. The worst thing that can happen to a dependent adult – which often happens – is being taken to a psychiatric ward.
There, such people are frequently “hushed” with medications or restrained using straps, permanently attached to the bed. “Unfortunately, I have heard such stories,” Urszula adds.
She decided that she wanted to help others, by educating about autism, teaching acceptance of diverse “otherness”. She therefore set up the Niebieski Szlak (“Blue Path”) foundation and organises an annual event on World Autism Awareness Day in Gdynia as well as supporting other parents.
In Poland, as the state provides scant help to parents of disabled children, non-government organisations play a huge role. They offer financial, psychological and mental support to families, teach and educate, and offer counselling and advice. They often create support networks to make sure disabled children are not alone. According to many experts, such NGOs are doing what the state is failing to do.
Translated by Ben Koschalka
Main image credit: Tomasz Stańczak/ Agencja Gazeta
