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Participation in society

With long-term mechanical ventilation one can participate in society in the same way as others. Learn about Vanja and Jorgen’s experiences.

Vanja on participating in society

Participating in society – text version

Adaption in the kindergarten wasn’t very complicated because it was already pretty well adapted. There was a ramp to get in and Vanja had a small wheelchair that she ran herself. At the time she only used the respirator at night, she didn’t use any oxygen or anything like that so she took her little wheelchair inside and we had a Special Education Teacher at home the days she couldn’t go to kindergarten, and brought children here. Then she started elementary school when she was 6, she had then started with the respirator at daytime, both day and night. She didn’t use oxygen yet, but she had a nurse with her at school and had normal days. The medical part was my main task, the teacher was responsible for everything concerning studies and things like that, but I was also assistant in class. I was there already from the first day of school so everybody in the class knew me well and in this way I also became kind of an assistant teacher. And I guess I was also one of her friends kind of, in a period so that we could create good play situations. But it didn’t take long before she took that role herself because of her character, to take contact and make friends. We started in the same class, we were, well Vanja was 6 and I was 5. I can’t remember that much but I remember, that Vanja was kind of the one that, that there was much focus on Vanja in Year One and that I was very curious about who she was. In fact, now we’ve become so good friends that it’s almost like being sisters. Singsaker school already had a lift, what we needed was a rest room. But she didn’t use it much because she never had time to rest, but at least she had the possibility and we had some facilities for training and those things. Now she goes to “Katta”, the Cathedral school on the other side of Nidaros Cathedral. It isn’t far away, and they were very sceptical of having her start there. After all, it’s the oldest school in Trondheim, and they had never had any students using a wheelchair, so I said that it was about time that they had one. And as the teachers say, they are very lucky to have had the chance to get to know Vanja. She shows life from the other side of the coin, and is industrious and hard working and gets on with the work, she wants it done. I was going to substitute for a few days at the school for someone who was going on holiday, and since then I’ve been coming to school. Bodyguard yes, I follow Vanja and prepare the PC and the books, move her, and take care of suction and bagging and all that. In other words, make sure that she can participate as far as possible. You have journalism as a subject, and you have worked with sound. It’s quite varied, lots to do. They work in sections ending up in a project where they can demonstrate what they know. I remember the first time I med Vanja, I was sitting in the classroom and suddenly I heard a Darth Vader kind of thing that came in, and when I turned around Vanja was sitting there. We have wheelchairs in the classroom, so then I sit on one and hold on to Vanja’s wheelchair, and then I don’t let go so that I become like a trailer. I think everybody is fond of Vanja, even if she can be a bit of a bully sometimes i think most people tolerate it in a way, and it’s also a little funny for those who are not being bullied by Vanja.

About Vanja and adaptation in her family

Adaption in the family – text version

I have been very clear about the organisation at home, it has to be like I would have wanted to work in someones home. So we are very separated, but still close. Vanja has her room on the ground floor and a separate toilet for employees and her own bathroom downstairs, and then we have an equipment room. We have also reconstructed the house so that we have bedroom, bathroom, living room and kitchen upstairs. And then there’s the lift in between, so that when Vanja has company they are downstairs. Vanja likes to be in her room and thinks that it’s very nice to be there. Oliver’s room is just next door and he must go to bed because he has school in the morning, but Vanja likes to stay up a little later, so she makes a bit of noise. Laughs and fools about. At home i play, do homework and have dinner upstairs. I don’t watch that much TV anymore, I used to do it more. In the evening, just before nine o’clock I usually go down to Vanja’s room to see what’s going on. Then also I scurry around and then we talk a little. Compared to others we live a pretty normal life, even if we have some limitations it’s pretty normal. If we look around. People tell us too, that we are good at living normally but what is normal really? I know that I mean a lot to Vanja. I’ve been supporting her ever since her first year in school. And when we have done new things, f. ex. when we started confirmation class together, it is natural that I get up and talk a little about Vanja and about her decease. And in a way shows that you can talk to her, that you can be friends with her, she is completely normal mentally, that there’s nothing wrong with her in that respect. If I were to give any advice to someone who would like to start working like this, I think that the most important thing is to look inside yourself and think do I wish to work in other people’s home? In the home of other people. Because it’s a completely different situation than working in a hospital. At the hospital it’s your workplace, and it’s just your workplace. Here the workplace is also the home of another family. And we need to take that into consideration. We have that taco Wednesday when Janne and Fredrik comes and we think it’s so nice to see the youth together and that there’s a little activity in the house. I can see that Vanja has become a person that enjoys life, like I thought she would. I wanted to give her a good life, and I feel like we’ve succeeded at that. Give her all the experiences we can, give her what we can, let her experience the things she want to, give her what she wants as far as possible. Really, give her the chance to be the person she is despite what people think she is, to put it like that.

Jørgen’s experience with being employed

Participating in society

I do not currently have a regular job nor do I study, etc. However, from 2007 until 2010 I was employed by one of Norway’s largest broadband providers, as a customer service representative. I also found that using a breathing machine at work was different to when I did not use one. You can read about my experiences and thoughts on using/not using a breathing machine at work.

For most people, the word ‘job’ primarily means doing something that is necessary in order to provide for their families and themselves. Going to work is a necessary obligation; a way to obtain financial security. This has never applied to me. Since the age of 18, I have received the full disability allowance. Therefore, I have never had to fight for financial security. I have never had to depend on myself in daily life. Nonetheless, I still believe that having a job, even if not necessary, is a good way to become included in society. It was also valuable in other ways.

Always liked IT

It has always been natural for me to use a computer in many situations. Even though there are probably millions of possibilities that I have not yet tried, I always imagined working within IT.

I trained to be a network administrator at a vocational college from 2003 to 2006. This led to my first job in 2007. I enrolled on a job-training course through the Norwegian Labour and Welfare Administration (NAV). Whilst on the course, I had one month’s work experience using different types of computer networks. It turned out that my adviser knew someone who was a manager at the company concerned. He arranged a job interview. Three representatives of the company were present and I don’t think I have ever been so nervous as I was when I entered the company’s premises. I should probably have been more prepared for three people analysing me, but I wasn’t.

It all ended with a full-time position, which was eventually reduced to three days a week from 10am-2pm. My duties consisted of being connected to a computer with a headset on my head. Customers telephoned me for technical support for their broadband connection.

Better work with a ventilator

My assistant who accompanied me sat and wrote on the keyboard whilst I dictated reports. Consequently, I had to take a lot of breaths, especially as the words had to be clear and precise. I didn’t use a breathing machine for the first 18 months. As a result, I was frequently absent from work due to respiratory infections and my absence due to sickness was above the norm. In addition, it was difficult to hold long conversations over the telephone without my voice becoming low-toned with confusing speech.

When I finally arranged for a breathing machine on my wheelchair, it wasn’t very long before my workday improved. The lack of concentration and focus I previously endured was quickly transformed to the opposite. It was suddenly much easier to see the context in my work and my problem solving skills were boosted. I struggled to hold a conversation for more than ten minutes before, but afterwards it felt like I had added strength to do my job. My day, after work, also improved. My absence due to sickness significantly dropped to practically nothing. I think management was more satisfied with me after I made the change.

Not always equally motivated...

I will gladly admit that there were mornings when I did not want to get out of bed, when sleep seemed more of a privilege than sitting talking to a dissatisfied and angry customer. After three days at work, I was often exhausted both mentally and physically. It takes a lot more to get up early, and stay focused and concentrate hour after hour, than it does to get up around 11am/12pm, watch some TV and then surf on the Internet. It’s much more demanding.

Nonetheless, that type of life definitely had its advantages despite the stress. I greatly appreciated contributing to society and having a role to play. Prior to starting work, I had nothing to do for a year. When people asked me, “What are you doing nowadays, Jørgen?” I felt that I didn’t have much to tell them. However, when I was employed I was proud to say, “I’m a customer service representative for a broadband provider.” Often the response was, “You’re working?” That’s great! Although, you don’t need to work, but it’s good that you do anyway.” It boosted my confidence to feel that I was part of something bigger and more important than staying at home relaxing everyday. I particularly remember driving home from work. I’m the type of person who finds it boring to be serious for several hours at a time. It was only a 20-minute journey, but I used to send my assistant crazy with all the silly things I said about absolutely anything that came into my head. It was quite the opposite of a typical conversation with a customer. Such moments made my workday worthwhile. In the evenings I could enjoy a film and TV without feeling guilty that I should be doing something more constructive, as I did something constructive during the day.