Module 1: Living with

I was the middle child of three siblings and grew up in rural surroundings in West Norway. The nearest city was Bergen, a few hours’ drive away. My childhood was safe and secure in a small and orderly environment with nine pupils in my class. Everyone knew each other and it was easy to form new friendships.

I was diagnosed with Duchenne muscular dystrophy at the age of four. At that time I could walk and stand, but could not run. It prevented me from playing with other children and it stressed me out trying to keep up with them. Nonetheless, I managed to establish contact with some of the other children in the village.

I got an electric wheelchair when I was eight and I used to sit on the sideline whilst the other children played football in the school playground. It didn’t bother me, as I didn’t think that I was the only one who couldn’t play football. The wheelchair enabled me to accompany my family for walks in the woods. I was more independent and could move faster outdoors.

Family togetherness was always important. Even though I was more challenged than my siblings in general, my parents always focused on treating us quite equally. To the extent possible, they wanted us to do the same activities whether it was a fishing trip, walk in the woods and fields or just playing with the other children in the neighbourhood.  The main focus was my parents’ idea that my handicap wasn’t going to signify my daily life. I was going to do what other children could do as much as possible. I wasn’t going to sit indoors and think about everything I couldn’t do. My mother ordered me to go outside and play if had been sitting indoors too much.

In hindsight, I think my parents thought that no one was to be too concerned about the fact that I was handicapped. But, of course, my handicap was the focus of attention when I had to adapt to assistive devices, meet medical personnel in connection with outpatient check-ups, and training and physiotherapy, etc.

The values and attitudes I possess today mainly come from my parents, but something else also turned out to be an important source of inspiration.
Having a handicapped child leads to limitations. A parent can feel that many things have to be taken into consideration, which can also affect the relationship between the mother and father. However, there was one solution that worked very well for both my parents and me. When attending the outpatient clinic for a check up at the age of ten, we were offered respite care.

Parents of handicapped children are offered respite care to give them a rest and break. The children, however, get to experience a different type of day with several mandatory or voluntary activities. Although, my respite care was not entirely different to my normal daily life. I took my school homework with me and the special education department at the respite care centre followed me up. I also met others in a similar situation and gradually became well-acquainted with four other users. Even though it was very important to me to have friends that were not handicapped, I also learned a lot from others in the same situation as me. At that time, it was immensely inspiring. In that way, I learned how to be more independent and I believed more and more that I could manage on my own. It could just be a simple thing like going to the shop and asking a shop assistant for help if I couldn’t find a product. Activities were also staged, making it possible to visit the city centre (Bergen). For me who came from a small village with few services, this was a huge change of scenery. I soon discovered that this was where I wanted to live when I grew up.

If it is possible to meet like-minded people in similar places, I look upon it as a perfect opportunity and one that I wholeheartedly recommend.