By Bente Kloppenborg
Recently, one of the students at Egmont Folk High School, a young girl with cerebral palsy (also known as spastic paralysis), fell seriously ill with pneumonia. She was hospitalized for an extended period of time, and for a while her condition was so critical that it could have been life-threatening. But she got over it and came back to the folk high school. A few days later a theatre-concert was scheduled at the folk high school, and the young girl insisted on staying at the school during the weekend. She wanted to be on stage with the others in her wheelchair. The girl’s mother had been thinking that her daughter should come home for the weekend and get some extra care. But the girl insisted on staying at the folk high school. Her three assistants, who are students at the school as well as disability care assistants for their co-student, all went along to the hospital when she was admitted. They were of course concerned, and they worried about how they should handle the situation. What if she had a relapse after she was discharged? Could they just to go home and enjoy life at the school letting go of their worries and partying with their friends while their co-student was in hospital?
Being together in a diverse community challenges and develops the students. Every day, concepts like inclusion and community are up for discussion. Egmont is a folk high school, not a treatment centre or a housing facility for people with disabilities and we always stress the importance of engaging with the students first and foremost as human beings.
Of course, we do have special information about our disabled students. We need knowledge of their diagnoses and case histories to be able to arrange their day to day as best we can. We are dealing with everything from physical disabilities requiring special devices, fixtures and aids to mental or cognitive problems making it difficult for some of our students to be part of large crowds, to be exposed to loud noise or simply to engage in social relations.
Around 50 of our students are afflicted with physical disabilities so servere that they need between one to and four assistants to help them in the everyday. Some need help with bodily care and personal hygiene and are only able to communicate through eye-controlled computers. All this takes up a lot of attention at the school, and the physical environment and time schedules have been designed accordingly. At the same time, however, we insist that this school really is a folk high school in the full sense of the concept. The school is a community of young people who are meant to leave after their stay with a higher degree of independence, life experience and personal command.
The school is a community of young people who are meant to leave after their stay with a higher degree of independence, life experience and personal command.
Bente Kloppenborg
We always see the human being first. Who are you? How can you take part and how do you want to take part in this community? How can you open yourself up to others, and how can others open themselves up to you in a community? These issues are negotiated every single day, and because of the rich variety in our student body, this is a never-ending dance. We will never reach a point where we have all the answers to the questions our students face us with. We have students with Down’s syndrome, social anxiety, brain damage and autism. We have students who may not live a long life, and we have had a former handball player who is disabled after falling and breaking his back. Many folk high schools aspire to diversity and aim to be a place where people with different backgrounds can meet. But Egmont, the differences are probably bigger and more pronounced than anywhere else.
Apprenticed as manager
Our disabled students often come to us straight from home or from an ‘efterskole’ and they need to learn to take responsibility for their own lives.
That is why I have developed the subject ‘My life, my responsibility’ for all our disabled students. In it, they learn how to make decisions on how they want to live their lives, and they learn to take as much responsibility as they possibly can in spite of major cognitive challenges: How can they get good friends, how can they manage laundry, physiotherapy, meetings, cleaning and shopping? What can they take charge of on their own, and what should they leave to others? They get a chance to train all this in a safe space where they are also enabled to reflect on their experiences and in that way understand their own possibilities and limitations.
For some, the subject of Citizen-Controlled Personal Assistance (CCPA) is a big help. This is a programme granted to some people with physical disabilities allowing them to have a home of their own and be the manager of their own personal assistants. Here at the folk high school, our disabled students can learn about the programme. For some, this can lead to receiving an actual CCPA grant. For others, staying at the folk high school becomes a process where they realize that they cannot manage living on their own. In the CCPA subject, we practice staff meetings and performance reviews enacting the concrete situations that our disabled students must be able to manage. An example is cleaning where they need to form an opinion about their own standards as opposed to the standards of their mothers and fathers. Do I want my clothes lying about on the floor? What do I want to prioritise getting done? And how can I convey this to my assistants in a good way so there are no conflicts? We do roleplay and practical tasks.
Indeed, these young people really face with big questions. Who do they want to be in life? How do they want to contribute? How do they want to live with the limitations they have in their lives? One of my former students, a young girl with cerebral palsy, recently came back to do a presentation as part of the CCPA subject ‘My life, my responsibility’ When she started at Egmont Folk High School, she was very immature and mentally unstable, coming straight from living with her parents. In the course of the four years she spent at the Egmont Folk High School, she learnt how to handle herself socially and personally. Today, she benefits from a CCPA programme and lives on her own, even though she can only communicate by way of an eye-controlled computer. She has been through many frustrations and periods of unhappiness because it is, of course, hard to accept that you have to live a life without being able to have a job when you are a bright and resourceful person. But she leads a meaningful life. She is doing Preparatory Adult Education; she is active in paralymbic sports, and she has recently begun working at a Danish tv station for the mentally disabled.
People with disabilities are just as different as everyone else, and what do you do, if the one you are working for is umpleasant? How and where do you draw the line?
Bente Kloppenborg
The art of helping
The assistants are truly faced with challenges as well. The may find themselves confronted with a young man with cerebral palsy who needs help with all personal hygiene, who can only communicate by way eye-controlled computer, and who needs to go to a public swimming pool on a Tuesday night as well as a party at his old ‘efterskole’ the following Saturday. They have to organise all that and they really learn how to improvise. There is a lot of learning involved, and it is also significant to experience that you can mean so much to another person. It is a major responsibility, and it can also be difficult and challenging in terms of your own boundaries. It may turn out that the person who has hired them is less nice to be around than they thought. People with disabilities are just as different as everyone else, and what do you do, if the one you are working for is umpleasant? How and where do you draw the line? And what do you do if the cooperation between you breaks down completely? We have many conflicts like that, and it has become one of our goals to find the possibilities and openings in all these challenges. To figure out how we can teach our students to deal with these conflicts and find a solution.
On the one hand, no one can shirk the responsibility, and no one can manage everything on their own. On the other hand, the disabled students also show a great deal of solidarity. A physically-disabled student who studies outdoors activities may have to accept that there are things he cannot participate in quite like the others, even if he is allowed to join all the activities. Alternatively, a wheelchair-user may find herself part of a group whose duty it is to wipe off the tables in the dining hall. She may only be able to sit and wave a cloth back and forth, but that is then what she does, and in this way, she supports the rest of the group while they wipe off the tables. Or, she may have to accept that whereas she was carried to bed by her father back home, here she is placed in bed using a lift, because we need to be careful with the assistants’ backs at the folk high school.
That is very much what it is all about: finding a role in the community and taking responsibility and showing solidarity on the basis of our different conditions.
Bente Kloppenborg
The are many moments every day where I think to myself that this right here, this is what it is all about. When I see a big group of students – with or without disabilities – doing polar bear swimming and sauna bathing together. Helping each other drag one wheelchair-user after the other into the water and back into the sauna. Or, when we do a field trip and one of the students breaks down and has to go home, because the whole thing is simply too much and one of the others says “You know what, I am going home too, no problem”. This is when I see the students doing what really makes the community work: They do what they have to do when they have the energy to do it. That is very much what it is all about: finding a role in the community and taking responsibility and showing solidarity on the basis of our different conditions. And I do not think anyone leaves this school without having learnt a lot about themselves, without having matured as a person and become more able to make decisions in life.
