In Gdansk, people with Down syndrome are finding jobs thanks to an innovative collaboration between NGOs and the private sector.
When the bus arrives at 4:30 p.m. sharp at the stop between Wieliczka and Niepolomice, Anna Wlusek clutches the coins her father counted out. She gives the money to the driver, sits down and watches the villages go by behind the window. When she hops off she waits at another stop; a dozen or so people wait with her. Some of them already know the brunette who regularly takes bus 144 to the Krakow Congress Center. Others know her by sight.
Although there’s still an hour to go before the concert, Anna quickly enters the building and joins the group gathered in the foyer. The briefing is about to begin; the annual Krakow Film Music Festival starts today. Joanna Romanow, coordinator of audience development and sales, goes over everyone’s duties and what rules apply when working with the public (“above all smile, and be kind and helpful”). Anna listens, although she’s already familiar with all this.
She’s been working for two years in a special program of the Krakow Festival Office (KBF), which organizes concerts and events in the largest entertainment venues in Krakow.
The 32-year-old has an extra chromosome. In her, chromosome 21, instead of the usual two elements, contains three. Occurring once in 800-1,000 births, trisomy 21 or Down syndrome is named after John Langdon Down, the British physician who described the genetic anomaly in 1866.
Today Anna is working the guest office. When the visitors start to arrive, she collects their invitations and gives them directions.
By the time the third gong sounds, most of the audience is seated. Anna, dressed elegantly in a white blouse and dark pants, still stands erect near the guest office. She waits for latecomers as the first sounds of music come from behind the walls. By the time the piece ends and the venue is filled with the sound of thousands of clapping hands, Anna is back outside, waiting at the bus stop.
Part of the Group
The concept behind the program is simple. It started several years ago with a trip around Europe. In a Belgian museum, Jerzy Limon, the founder and director of the Gdansk Shakespeare Theater, saw people with Down syndrome greeting visitors and giving them directions to the exhibition halls and cloakrooms. He observed similar situations in the Netherlands and Germany. The visitors’ reaction to the workers was very positive. “I promised myself that as soon as the Gdansk Shakespeare Theater was established, I would copy the idea,” Limon says.
He kept his promise. When the Gdansk theater opened in 2015, Limon contacted the Gdansk-based Foundation for Developmental Support JA TEZ (Me Too), which hired job coaches and organized a six-week training for six people with Down syndrome. They were taught to work with the public. They worked two to four hours, greeting guests, checking tickets, and showing people to their seats. The project was called “Along the way with Shakespeare” and was financed by the city of Gdansk. Now called “Bus Stop Shakespeare,” the program continues, although with a pause because of COVID-19 restrictions. Before the pandemic, the number of participants had reached 10, and their salaries were funded by sponsors.
“They are not full-time employees,” Limon explains. “They get tired faster. Some of them come here alone; others get a ride from parents. But despite the limitations, when they’re at work they’re totally dedicated. They’re very conscientious. They’re never late, and they’re well-dressed, smiling, and helpful. And I’m not exaggerating or saying that because they have Down syndrome. I’ve seen many times when they were disappointed or dissatisfied because people found their own seats and they couldn’t help them.”
Pleased with the collaboration, in 2017 Limon met the heads of theaters in the Tri-City area (Gdansk, Gdynia, and Sopot) and shared the idea of employing special-needs individuals. Soon, the Music Theater in Gdynia chimed in, offering internships to six people. Later, local initiatives implemented the idea: business meetings organized by LinkedIn, cultural exhibitions and fashion events, and entertainment events at the Gdansk International Fair.
A year later, the idea spread to Krakow, when the Krakow Festival Office hired six people with Down syndrome to help at concerts and festivals – including Anna Wlusek. These employees are paid directly by the Krakow Festival Office, not by sponsors.
In Gdansk, the special-needs employees move freely around the theater, after first getting to know the space and being trained in social situations, explains Jaroslaw Rebelinski, an actor, director, and activist who has trained employees in Gdansk and Gdynia.
The non-disabled and the disabled share a space in the cloakroom, where they can interact. “Some people with Down syndrome have a tendency to shorten social distances,” Rebelinski says. “They’re extremely friendly and outgoing, wanting to hug. We learned that not everyone likes that, especially at work.”
There were a few other challenges. Employee Janek, sitting in the audience during a performance, began to whisper to himself; Michal felt uncomfortable when the lights went down. Some of these behaviors are involuntary, deep-rooted reflexes. “When something like that happened, we changed tasks and assigned them to those who felt comfortable with them,” Rebelinski explains. During the 2019 summer season, performances ran seven days a week. All six employees made it through. They “feel valued, proud to be part of the group,” Rebelinski says. “They see this work as prestigious. And why not? They have a representative role. They are a showcase for the place. They work on the front lines. They’re not pushed to the rear so their disability won’t be noticeable.”
The project doesn’t just benefit those with special needs. For JA TEZ president and co-founder Malgorzata Bulczak, whose group has helped in the recruitment of the disabled and continues to run Bus Stop Shakespeare, educating society is an important aspect. “In the theater, up to 500 people sit in the audience,” she says. “Everyone can see our charges. Maybe people are surprised, they don’t know how to act, but most often they end up making small talk and having short interactions. If we give people a chance to get to know people with Down syndrome, they get used to ‘otherness’ and can simply like it.”
According to a survey conducted in 2018 by the European Down Syndrome Association, based on data from 17 countries, only 2 percent of Europeans with Down syndrome work in the open labor market. About 3 percent find employment thanks to social enterprises, about 6 percent remain in sheltered workshops. Eight percent of respondents attended schools, workshops, and socialization centers.
In Poland as in other European countries, people with Down syndrome and other intellectual disabilities often work under special conditions. The Polish Federation of Supported Employment says it supports about 4,500 people with intellectual disabilities. More than 2,000 of them work in the open labor market.
Getting around the Gdansk Shakespeare Theater is a challenge. It’s built on the site of a 17th-century theater known as the Fencing School, the first public theater in Poland. From the outside it resembles a brick fortress. The wooden interior, like the London Globe, has three levels, a Renaissance stage with actors within the audience’s reach, and galleries around it. You can get lost here.
Before 26-year-old Emilia Kochanska found her way to the theater in 2016, she learned there was no place for her in the occupational therapy workshops where people with disabilities gain experience before entering the labor market. Emilia likes sports, traveling, and books. In the future, she’d like to look after children with disabilities, especially those with Down syndrome.
She found work in the Gdansk Shakespeare Theater and in 2017 confidently worked an event attended by Prince William and Kate Middleton.
When her mother heard about the project, Emilia initially didn’t want to participate. She was afraid of the unknown. But her mother persuaded her, and she thrived there. After four years, in September 2019, the Music Theater in Gdynia offered her a regular part-time position, instead of the one-off contracts she’d been offered previously. “A real grown-up job,” Emilia’s mother Danuta says proudly. Her daughter was the first person with Down syndrome in the Tri-City area to be offered an employment contract on the open labor market. “I feel grown up; I feel needed and happy that I can help,” she says.
When asked about her dreams and things she would like to spend money on, Emilia says she can’t think of anything she needs or wants: “I have no dreams because they all came true. I can spend time among people and work – in the theater! I wanted to just have a job. My mother always told me that Down syndrome is just a genetic defect, and one can live with it.”
Bulczak, in addition to her work with JA TEZ, is a business coach and a mother of three. Her 11-year-old daughter, Joanna, has Down syndrome. She is a proponent of the open market taking over the efforts of non-profits, as was the case of the Bus Stop Shakespeare project.
Agnieszka Woynarowska from the Faculty of Social Sciences at the University of Gdansk, who specializes in people with intellectual disabilities, has studied Bus Stop Shakespeare. She notes that many people with Down syndrome participate in occupational therapy workshops financed by the State Fund for Rehabilitation of Disabled People (PFRON). “However, when they take up employment subsidized by PFRON, they lose their place in the workshops,” she says. They can only receive one type of support. To get around that, the JA TEZ foundation signed an agreement with the Gdansk Shakespeare Theater to classify the Down syndrome participants as apprentices.
The work environment must value diversity. Not everyone is open and tolerant enough to notice the advantages of employing people with intellectual disabilities in cultural centers. “Maybe they would … if they heard about such initiatives more often and found out that they work,” Woynarowska says.
A residential building for 20 adults with intellectual disabilities will open soon in a park near the Sopot train station, under the auspices of the Nasz Przyjazny Dom (Our Friendly Home), an organization established in 2013 by the mother of a boy with Down syndrome. The opening, originally set for this month, has been put off until coronavirus restrictions are lifted.
A man wearing a baseball cap meets me at the door. He puts out his hands as if he wants to hug me like an old friend, but he changes his mind at the last moment and formally shakes my hand.
“My name is Michal Milka. You know, like that Swiss chocolate. I will live here. Would you like to see my room?” he says bluntly. When I go up the stairs, I learn that Michal is 37 years old and loves art. He’s an actor in the Razem Theater and looked after audiences at the Gdansk Shakespeare Theater for several years. I came to talk to him about it. “I loved the job because I got to know the theater from the other side,” he says. “There I was helping you, the non-disabled. And not just from Poland. The English came. I talked to them because I learn foreign languages easily. In English I say “help you,” “hello,” “ticket please.” I also know a few words in French and Spanish. And a little German.”
After visiting the spacious, bright room where Michal will live, we go to the park. The sun is shining, so we duck onto a shady bench. People rush by, heading to work or to the beach. “Cultured people come to the theater to see plays,” Michal says. “They don’t say anything bad to me. But in other places it happens often. I was on the tram, and a couple of students told me people like me shouldn’t ride the tram. Or a group of boys in front of the house yells at me when I go shopping: ‘Yo, Downie.’ I know I have Down syndrome. I’m an adult. I deserve some respect. Maybe I’m a little childish, but I’m still an adult. I decide for myself. I work, I have money for the future, for a future apartment. And maybe I’ll find a partner.”
When he gets up to say hello to some friends, Michal’s mother, Jolanta Woszczerowicz, explains that the Gdansk Shakespeare Theater project made others realize that people with Down syndrome who have the appropriate skills can prove themselves at work. A few months ago Michal was offered a part-time job in the Gdansk-Wrzeszcz City Hall and now works there as a clerk. From his salary, and money earned at the theater, he’s bought some things related to his interests – CDs, paint supplies, books. A fan of the “Harry Potter” series, he has the whole set and has read it several times. “Of course I could give him all of that, but he really cares about buying things with his money,” his mother says. He’s also saving up for an apartment. Michal is the second person from the Bus Stop Shakespeare project to obtain an employment contract on the open labor market.
As we are about to say goodbye, one last question comes to my mind: “Michal, if you wanted to say something to the world, what would it be?” I don’t have to wait long for his answer:
“Dear friends, when the non-disabled and the disabled stick together it’s always better. You can get to know us and become friendly with us, and find out that we can also be useful and have our own dreams. If we’re in good shape we can go to work, but we have to be given a chance, a helping hand, and support.”
Dorota Salus is a freelance journalist and translator in Lodz. Her journalism has appeared in Gazeta Wyborcza, Wysokie Obcasy, Polityka, Zwierciadlo, and other Polish newspapers and magazines.