a cura di Paola Rampoldi
Lo scorso novembre abbiamo conosciuto Jenneke Lambert e Mijke Ulrich durante il convegno L’arte accessibile. Musei e progetti per persone con disabilità, organizzato dalla Fondazione Palazzo Strozzi di Firenze. Il loro intervento e il workshop che hanno condotto erano focalizzati sul programma che il Van Abbemuseum propone alle persone con afasia. La proposta ci è sembrata di notevole rilevanza e abbiamo così deciso di intervistarle per approfondirne meglio i diversi aspetti.
Mijke, Can you tell us something about your story?
Mijke : Since I was in my mother’s womb, I had brain damage that’s called AVM (Arteriovenous malformation) but I was well until I was 29. Then something happened, I had an intracranial hemorrhage. I laid two months in hospital, the time of which I don’t remember.
When I regained consciousness, I saw myself and I didn’t see the person I was, I couldn’t walk, couldn’t talk. I remembered that I had a good job in a hospital, that I had a boyfriend and that I had my own house but I was sitting on a wheelchair and speaking was very difficult, I thought I would never get that life back. My first reaction was sadness and I started smoking again! After that week I said to myself ‘ok I’m not dead I’m still alive so I have a choice to make: to be a not nice person or to fight to be the person I want to be.’ And that’s what I did.
In the rehabilitation Institute doctors told me I have to learn to speak again, to walk again and to write again. I stayed there three months.
When I came back to work again in the hospital, I met people also with brain bleeding and I saw that all the joy was gone out of their lives, so I decided what would be my mission in life. I know how it is to lose everything but I know also how to find myself and how to find my old joy in life. But not everybody can do that. So I have to help people. Some people like art, art in the widest way (modern art, music, theatre…), so I started to form that idea, one by one. I decided to start from a museum.
How did the idea of a programme dedicated to people with aphasia come about? What’s your role at the Van Abbe Museum?
Mijke: I live in Eindhoven and we have a modern art museum, the Van Abbemuseum. So as the first step of my ‘mission’ I went there and asked to talk to the director of communications to put forward my proposal which was to lead workshops in the museums for people with aphasia.
After a year he told me I could lead the workshops with a museum art historian to combine my personal experience and skills with those of the museum’s staff, but with the first lady there was no match, so the Director found another colleague for me and that was Jenneke.
She knew nothing about people suffering with aphasia so I told her about it, and also how she has to take care of. Instead, Jenneke is an art historian and she knows everything about the things I know nothing about. It’s a perfect combination. There’s a discussion between us.
This point is particularly interesting for us, what is the attention that people with aphasia need and how can the museum staff bear this in mind?
Mijke: By not talking too fast, revealing your humanity, introducing yourself, asking people what do you have to take care of, what makes it easier for them to understand and to communicate. By asking them if you have to speak louder or slower, if you have to use pen and paper or maybe if it’s better to use pictures. Asking and letting people speak about themselves, because the difficulties of people with aphasia cover a wide range.
The term ‘aphasia’ implies that one or more communication modalities have been damaged and are therefore functioning incorrectly. So, some people can talk but can’t write, others can talk but have difficulties to understand and there are people who can’t talk but can write…
Since when did Open your Heart start and how often is it scheduled in the museum agenda?
Jenneke: Our first contact dates from November 2014. Mijke visited the museum with a small group of people with aphasia. That is when we got to know each other. We felt connected, discussed the possibility to offer tours for people with aphasia in the Van Abbemuseum on a regular basis with the Education Department and started a pilot project in Spring 2015.
Ever since we offer the tour each end of the month on a Tuesday (because our availability, and the fact that this is a quiet afternoon at the museum).
How many people participate per tour?
Jenneke: The maximum amount of people would be eight people with aphasia and their partner/companion. Usually the group is smaller, typically two or three couples. We also give the tour when we have only one couple. Actually this couple comes every month. So we really got to know them quiet well!
People can register, but don’t have to. So we always count on ‘surprise’ visitors and they are always welcome. We realize this group may decide at the last minute to feel good enough to go to the museum.
What’s the museum task for this programme?
Jenneke: The Van Abbemuseum wants to be an inclusive museum. The museum should be accessible for all people, including people with any restrictions.
The aphasia programme is part of our Special Guests programme, sponsored by a national lottery. This programme serves also people who are blind or have bad sight, people who are deaf or are hard hearing, people with Alzheimer or other forms of dementia, or people with other restrictions or certain needs. Think of families with a child that has a restriction. With our Special Guest program, now the whole family can visit the museum and feels welcome!
The museum provides press releases via website and flyers. The tour is organized by us two.
Does each tour have a theme or is focused on a section of the collection? How do you select it?
Jenneke: Usually one week ahead of the upcoming tour, Mijke and I wander through the museum, discuss and both make our choices. Sometimes an exhibition offers a theme, sometimes we choose the works without a theme.
Mijke always chooses one or more works which she can relate to aphasia. She discusses the work from that special point of view. Our visitors understand that very well, recognize certain issues and feel understood. But also the art-historical context will be explained, or the story or point of view from the artist (my task). My choices focus more on what I absolutely want to share about certain artworks.
What happens during the tours?
Mijke: During the workshops I always start telling my story, what happened to me, and how I tackle to start enjoying life again.
Then, we focus on artworks starting for example with a discussion on colors. A lot of people with aphasia have problems with naming colors, and so do I. I know what color one thing is but the naming is difficult. So I explain to the participants how I learned again the name of some colors. For example, our long term memory remembers that the color of blood is red and when I see that color I train myself until the word ‘red’ comes to my mind. So I tell them how my brain works and we can have a great conversation. Some agree and some do not.
Then, Jenneke describes what the artist meant doing it and then sometimes it is very funny because the way I feel is totally different from the artist’s purpose.
In this way, people go home with two different ways of looking at the work of art. And there’s the possibility of liking or disliking the artwork but the conversation was there and there was also a lot of laughing.
I can’t guide the meeting without Jenneke and she can’t do it without me.
At the end of the tour we drink coffee together and this is a very important situation because in that moment people start speaking about themselves. They are gone to share together. The most beautiful stories come up there.
I think that the achievement of the project is due to me and participants have the same difficulties, there’s more understanding and a sort of ‘secret language’ between me and them. And that’s the power, they know I know and they feel more comfortable.
For me the point is not the therapy, but learning to enjoy life again, and in a museum we try to do it through art.
What’s the participants’ feedback? Are there people who participate several times?
Jenneke: Almost all participants return. To be honest, it still is a very small group. How many persons suffered from a stroke and like modern or contemporary art? But once they experienced the tour they are very positive.
We spend one-and-a-half hour in the museum, slow down, give all the time participants need. We avoid noisy spaces, bring stools to chat and relax in front of the artwork. The participants actually don’t prefer any kind of art for the tour, because they seem to have an open mind and are interested in the stories. Listening is more comfortable than reading. We talk slowly in an quiet environment without too much distraction to provide a pleasant stay at the museum. Of course they also have their own taste and know very well to communicate this. The partners/companions hold back a bit, so that the people with aphasia can really concentrate on what they want to share. ‘Sometimes a question will be posed, you stop, you are asked to think, to give an opinion.. that is nice.’ People are empowered in their self-confidence.
Are the participants only Eindhoven citizens or do they come from other cities? How do you reach them? How are they aware of your programme?
Jenneke: Most people come from Eindhoven and surrounding. They appreciate the fact that the museum is not that far from home. So far I know, the aphasia program only runs at the Van Abbemuseum. So once in a while a visitor comes from another city, but the trip takes energy.
Do you know if there are many people with aphasia in Eindhoven or in the Netherlands?
Jenneke: According to the Dutch aphasia society, there are about 30.000 aphasia patients in the Netherlands. I don’t know how many in Eindhoven. Our programme is also advertised at the local Aphasia centre but meets low response so far.
What does this project mean for you?
Mijke: This programme in the museum is part of a wider project I would like to extend called Open your Heart, and that’s mine.
The Van Abbe Museum give it another name, ‘Spraakmakend Van Abbe’ which is not really a word you can translate in English, is a word pun, a little joke, meaning ‘ much talked about’.
For me it’s not about speaking, is that when you start enjoying then your heart will open again. This project means a lot for me because nobody can do this for me.
So, there are many more steps for Open your Heart?
Mijke: Yes, all the time I’m thinking about new projects to find ways to help people to feel more happy and sure of themselves.
My second step will be theatre. I want to take people with aphasia to learn again that they can also express themselves without speaking. I would take people to the theatre and practice with acting. It will take time, but I will get by.
La proposta è consultabile a questo link