Samuel Bickit has Down syndrome while his twin sister Virginie does not. They both live with the Virginie family under the same roof. How are remarkable siblings organized in everyday life? A life plan that raises questions about the possibilities and limitations of integration.
Samuel Plüss and Virginie Plüss-Bickit may be twins, but their lives have been different so far. Samuel was in the spotlight from the beginning because of his health problems. He was an extrovert, she was quiet. Virginie looked after Samuel from an early age.
Legend: Twins Samuel and Virginie when they were little. SRF
He lived with his parents until the age of 16 Samuel. From then on, he lived in institutions during the week. He never felt at home there. Recreational activities were a particular problem.
He was not allowed to go anywhere alone, he had to stay in the room – due to lack of staff. Either the roommates were older or more severely disabled. So he didn’t have like-minded people. Although Samuel is a very social person.
Legend: Samuel Bickit with his twin sister Virginie: “Shared flat is fine for us.” SRF
In her youth, Virginie cut herself more and more from her home. She began her studies in the early twenties. Contact with Samuel remained. She saw that her twin brother was unhappy in the institutions where he served. He became more and more isolated, aggressive, and was given medications to calm himself down. That is why Virginie decided to adopt her twin brother in 2020.
Unique partners of a shared flat
Virginie, advanced in pregnancy, works three days a week as a teacher. In addition to doing justice to her one-year-old son Marvin, her twin brother Samuel, as well as herself – everyday balance.
Legend: Virgnie with her son Marvin in the kitchen. SRF
Son Marvin wants to discover the world. Samuel is a fan of the police – order is important to him. There is always tension.
Increasingly, Virginie has to mediate between them. And the relationship between her and her husband Faik always takes a back seat. He just doesn’t have time for himself. It is not only occupied by her son, but also by Samuel.
Besides his sister, his parents are an important part of Samuel’s life. The 32-year-old partially lives with them. When their babies were born, Rose-Marie and Emmanuel Bickit were surprised: “twins with Down’s incompatibility syndrome” – an extremely rare phenomenon. It is estimated that there are only a handful of them in Switzerland. Parents fought the authorities to ensure that disabled children could also attend regular classes. Success: Samuel was allowed to go to a regular kindergarten.
Inclusion: Human Right
What is needed to really enable people with disabilities? What is Switzerland like in this regard? In March 2022, the United Nations examined how Switzerland is implementing the United Nations Convention on the Rights of Persons with Disabilities. Conclusion: There is a need for action. In a residential area, for example, too much attention is still paid to institutional life forms.
Virginie Plüss-Bickit believes that people in Switzerland are too cautious about integration: “We avoid starting something because we don’t know exactly where we are going. We can make adjustments at any time. We are social beings. We need each other, some earlier, some a little later. Inclusion is an attitude of the heart. “
Samuel will always need support. Although he can handle the journey himself. He works four days a week in Münsterlingen, for a foundation operating in the horticulture sector. His supervisor, Börge Pietschmann, is critical of Virginie and Samuel living together: “Samuel is a grown man. He should have a group home, his own home. A place where he has a greater distance to his family. ”
Public and private barriers to integration
In Switzerland, about 15,000 people still do not have the right to vote because of a mental or intellectual disability. In other European countries such as Sweden, France and the United Kingdom, people with disabilities can vote.
Or when it comes to self-determination in sexuality, intimacy, and partnership, there is a problem. People with cognitive impairment have the same need for love, partnership, sensuality and sexuality as everyone else. Adequate accompaniment and support for a love and sex life that is as determined as possible can be challenging for those around you.
An experience that was also made by Virginie Plüss-Bickit and her family. Samuel has recently met a woman. She is 60 years old. No value loss. Exactly to Samuel’s taste. He can only imagine a relationship with a woman without Down syndrome.
Chances and limits of inclusion
In such situations, it is difficult to find a path between support and independence. The unusual shared apartment soon wants to take the next step on this path: they will move into a house where Samuel has a room with a bathroom and his own entrance. In this constellation there should be a healthy mix of closeness and distance in which everyone is free to develop.
What about integration in Switzerland?
Open the box. Close the box
Legend: Ufuk Duzgun
Islam Alijaj is the president of the “Activity” association, which promotes the potential of people with disabilities. Aliyai calls for a rethink: move away from heteronomy towards self-empowerment.
Alijaj was born with cerebral palsy, a movement disorder that affects his ability to walk and speak. He is the father of two children and has been politically active for years. For his commitment, he was nominated for the “Prix Courage” award in 2021.
SRF: How do you assess the integration situation in Switzerland?
Islam Alijaj: With us, people with disabilities are still determined by others. Lots of money flowing in (editor’s note: CHF 2.7 billion per year). But mostly to institutions, not to people with disabilities. They need more direct support so that they can lead an independent life.
For example, if a person with Down’s syndrome receives enough help, it is possible to lead an independent life. Be it in an apartment or a shared flat. I need support, not patronage. We can help ourselves if we let us. People with disabilities often live in institutions or at home with their families. Free development is almost impossible there.
How can society accept people with disabilities?
It’s about true inclusion. All people have the right to make their own decisions. It is important to give people the tools, to accompany and support them. Since I have been banned from speaking for twenty years and am determined, I cannot be expected to suddenly have an opinion and competence. Many people with disabilities have never had the opportunity to properly learn how to make independent decisions. Though they might find out if they approached them.
How far should each person be able to decide freely? Also in terms of partners and sexuality?
From my point of view, this is a personal decision. It enters when this environment dictates. How is a person to learn to judge situations if he is not allowed to make mistakes? People learn to deal with childhood mistakes. With the first steps, we fall, hit our heads, it hurts. Man has to make mistakes. In our society, however, it is different for people with disabilities. You must not make mistakes. Society beats them around the bush and gives them tips on how to live a good life. But that’s not how you learn.
Where do you see the limits of inclusion? Or maybe we are basically unlimited?
We need to build a system that is flexible. One that can respond to needs. We must become more risk-averse, in a positive sense. Everyone lives in stages. Each has different needs. In an inclusive society, they can be satisfied. It is not a rigid structure. But it does mean that you have a choice, that you can always adjust your needs. Switzerland, which has so much money, has the potential to make it happen. No other country has better conditions for an inclusive society than Switzerland. We have four national languages, villages, mountains, rivers, different cultures. Basically, we are very diverse. Why do we not dare to transfer this to politics, to society? We should be bolder in shaping this diversity on a larger scale. self-defined.
Information about the program “Reporter”
Open the box. Close the box
You can learn more about this in the “Reporter” program today, June 15 at 2 p.m. 21:00, SRF 1, “Not without my twin.”
SRF 1, reporter, June 15, 2022 at