'Society should be for all of us!'
The interview with Kirsten below was written in 2013 and just a snapshot. Check on social media how she is doing now.
When being asked where we could hold the interview best, Kirsten M. Juul invited me to the Arken Museum of Modern Art. In her adjusted van, where her mobile scooter can be put in easily, it took us a 20 minutes drive from Copenhagen centre to get there. Kirsten is passionate when it comes to art. She has been very creative herself for all her life. First I wanted to know how it was to live as a child with polio in the 50's and 60's.
'I was born in February 1950, and at the age of six months old I got polio. Thus, I haven't known anything else during all my life. There have been a couple of polio epidemics in the 50's in Denmark. The government at that time reacted on them by creating a social system to support the children concerned. Children were the most important victims. Many children were admitted to rehabilitation centers for years, but after the initial six months I spent in hospital, I stayed at home with my parents. Early in life I had many operations which caused a nervous breakdown at the age of 12.
’I have three older brothers. The oldest one thought I was being spoiled too much by my parents because of my disability, so he could be pretty hard on me. We still have a somewhat troublesome relationship, but in general all three have been/are very helpful.
'At the age of 16, I got financial support by the state in order to take an education. At the age of 20, I got my first invalid car. Early in life, I needed to struggle somewhat for such provisions since the social authorities judged my physical situation was not bad enough. I was a border case.’
After having finished school, Kirsten started working as a teacher. The first two years she taught English in normal classes alongside teaching severely disabled children who had also got learning difficulties. 'With regard to the disabled children, I was able to put myself in their situation. This gave me an advantage compared to the other teachers and a very good relationship with parents. I knew from the beginning that I would not be able to work full time, so I only worked half of the normal working week. That became too much though, partly due to the many meetings and all the contacts I had to have with the parents. At the age of 37 I retired.'
Life has not been easy for Kirsten out of another reason besides her handicap. 'I have given birth to three children, but the first two children were born prematurely and died. The third child was a son. He's 33 now and has never given me any problem as a child. He was very attentive as far as my disability was concerned and he still is. He is living his own life with a wife and two little daughters, so I am a grandmother. He has been living in Malmo in Sweden for some time. I found that hard, and thought it was so far away. I had an Australian friend though, who was living in Copenhagen. His mother accepted his living here without complaining. They have contact through mail, phone and travelling, so when I thought about that, I said to myself I should not have to feel that left alone. My son has moved to Copenhagen again, so now it's easy for me to see him and my grandchildren. Early in my son’s life I got divorced and lived as a single mom for almost 20 years, but now I’m married again.
'I always loved to travel. I've been to California for instance, but because of my progressing disability, I can't make such long trips anymore. After my retirement I took an official church singer education and worked as a church singer for five and a half years. I've also been member of a folklore group for 17 years. Despite my disability, travelling and performing went well. I used to work around my disability, making sure I got a role I could handle. I ended up as the conductor of the group’s choir.
'I come from an artistic family and I’ve always been a visual person. Already as a child I drew a lot and now, after having taken education on the subjects, I concentrate on painting and photographing. Sometimes, when my works have been exposed I got a lot of positive feedback and have sold quite a few works. It gives me a good feeling. However, I don't have to earn my living with it.'
Kirsten participates in the PTU, a Danish organization that strives for equal rights for people with serious physical injuries, such as polio. PTU does have political influence since local communities of disabled people must be heard by the politicians. To realize this, meetings are being held frequently. The current goal of PTU is to maintain a high standard of living despite the savings by the Danish government. The situation of Danish disabled people must still be improved. Take for instance Copenhagen.
'Copenhagen still lacks when it comes to being accessible. The streets in the medieval centre are horrible for people in a wheelchair or mobile scooter. I can't get from the pavement to cross the streets unless at intersections, where the ramps often are too narrow or too steep. It's a problem all my disabled friends tell me they too experience. One of those friends told me public transport in Copenhagen isn't so disabled friendly either. I've not checked this story, but some bus drivers should be driving rudely, not paying attention when someone in a wheelchair wants to enter the bus, and the same has happened on S-trains also. Since public transport in Denmark has been partly privatized, it’s difficult to hold the politicians directly responsible.'
Another subject PTU is striving for, is to get the possibility of a Swedish treatment for post-polio either being refunded if visiting Sweden or to follow it in Denmark itself. 'The medicine given is called immune globulin. I've had the treatment two times, and each time I could tell it really worked. I got more energy, had less pain and better sleep, and the effect lasted for a year or more. Unfortunately, there were many side effects after the second treatment. I would like to have another treatment though, but the Danish authorities don't want to pay the costs, because the treatment is expensive and it isn't officially recognized yet.
'We, who got polio as children, are, or at least have been, a forgotten group. Sixty to seventy percent of those who had polio in their early life are now coping with post-polio symptoms: being exhausted, having aching muscles, loosing strength. Polio has still not been eradicated worldwide, although the WHO predicted in 1995 it would be so in the year 2000. Every now and then it emerges somewhere.
'What is most important for me in order to be politically active is to work for fair and equal treatment of people who struggle with disability either in person or as a family member. I also deal with issues of accessibility. Society should be for all of us!’
Meaning of life
When the interview is done, Kirsten and I take a quick look at the museum. In one room, we get to talk about the meaning of life. 'I've been raised religiously, and I often went to church with my parents and loved it, and in my opinion some pieces of church music are the best compositions ever made. As an adult though, I think religion in itself sucks, because people are fighting wars over religious issues. That is so stupid! Nevertheless, I call myself a spiritual person, and I strongly believe one's thoughts are not without consequences.
'Some time after my first child was born and died, I started taking yoga classes. On the first day, the teacher taught about reincarnation. I asked her in general, not telling her about my own background, why a new born child must die. She told me it needed a birth experience to go one stage further on the path to the final stage called Nirvana. Then I asked her why the mother had to experience it. She said it was also of help to the mother in order for her to reach a higher stage towards Nirvana. I thought that if one could believe in that explanation, it would be very consoling.
'When I see how my son is raising his kids, I recognize some of the same patterns as when I was raising him. Life is going fast and my time is gradually running out. I hope though to be a good grandmother for a many years to come. I also hope to be able to continue painting and photographing for the pleasure for myself and others for many years.'
The musical choice of Kirsten is a clip from a performance with the folklore group Tingluti, in which she participated 17 years. Kirsten is on stage herself as a singer.
The site of the PTU can be found on http://www.ptu.dk/ptu/
Examples of Kirsten's work as both a painter and photographer are published on http://www.kunstsite.dk/kunstner/kmjKirstenMJuul/index.asp?pagetype=1&contentid=216 and
Copyright text: Johan Peters, May 27th - ...