Well built, with a bright smile on his face, you wWith his power wheelchair, Josef is occasionally pitied as if his life were very bad, or admired as if he were a hero. But he wants a different vision of inclusion and has always practised the simplest form of inclusion by getting help with almost all everyday tasks from colleagues, friends or family. This allows him to make his life as uncomplicated as possible and promote inclusion as an overall economic issue.ould never think when you meet him that Nicolas has been living for several years with epilepsy, a disease which he has learnt to cope with over the years, despite the more difficult phases. A very enlightening interview!
1) Who are you and what is your chronic disease?
My name is Josef Fleischmann. I am a research assistant and freelance software developer. I work a little more than full-time, mostly at home, but also in the office when needed. I have a congenital neurological disorder, a spinal muscular atrophy. When I was 1 year old, my parents realised that I couldn’t really crawl. There are 4 stages in this disease, which indicate how severe it is. With type 1, you can’t hold your head. I have type 2: I use a wheelchair and need 100% care, but I can hold my head well, I can type and eat with a fork.
I don’t have any pain at the moment, but that could still happen. Because I hardly move, the anatomy of my body changes over time and pain could occur. Of course, something can be done about it: physiotherapy several times a week; adapting the wheelchair, so that it fits me better with the changes.
Even though the disease has worsened over the years and will continue to do so, I am doing very well and have a good life. Especially compared to people affected in other countries, such as the USA, where care is not as high quality as in Germany.
2) How does it affect your life?
I went to a special school for children with disabilities in primary school and then to a mainstream high school. After school, I moved away from home to study and work, but ended up back home after a few detours.
I now live in a village with around 90 inhabitants on a former farm with my 2 sisters, but I am alone in my flat. We all work from home, so it feels like a co-working space. We eat together and they help me with things like going to the toilet or doing the housework. External help comes in the mornings and evenings to help me get up and ready for the day/the night. When my sisters are not at home, friends come to work in my home office, or I organise someone for the day.
The house has been remodelled over the years to make it larger and more accessible. We have installed automated solutions: The lift, front door and lighting all respond to my voice so that I can live as independently as possible.
3) How did your family and friends deal with it or deal with it now?
Everyone is dealing with it very pragmatically; we are coping very well. I’m doing very well, but that’s mainly down to my friends and family. Both my friends and my family are very supportive. We all grew up like this. Even at school, my friends supported me. It’s always been part of it somehow. Because there is no “me” without my condition.
I don’t have a personal assistant because I would feel uncomfortable if someone was always there. People are happy to help me with little things, e.g. on public transport, and I can always call friends or family. Carers come for 2 hours a day, in the morning and in the evening, for the routine care.
“Some people on the outside feel sorry for me, but I’m really doing very well, I have a very good life.” – Josef Fleischmann
4) What was, or is, the most difficult thing about the disease?
I have been living with my illness for a very long time and have therefore gained a wealth of experience over the years and know how to organise things. Every disability is individual, for me it’s not just the wheelchair. I need help with every movement. I lack muscle strength. The cold also affects me: if I stay out in the cold for too long, I can no longer move.
5) What are you most proud of having achieved despite your disease?
My life without a disability would probably look very similar. After school, I wanted to do a dual study programme: I was told that it wouldn’t work, that it was impossible. But it worked out. During my studies, I lived with other students who looked after me and for whom I paid the rent in return, so I didn’t need external care.
For me, this is a good example of what care can look like: without external care, but with the support of the people around me. I do the same in the office, where my work colleagues help me when I need to go to the toilet or want to eat. They are always happy to help, and it doesn’t create a strange atmosphere because there is no obligation.
I don’t force anyone to organise their care the way I do. But many people in need of care are only familiar with traditional care models and there are other ways of organising care. It’s also important to me that the state, i.e. the taxpayer, doesn’t pay for my care.
I’m actually very proud that my image of what inclusion means for society (with mutual support from the people you spend your everyday life with anyway) works. I have had very positive experiences, even if I know that it is not always understood or supported by other people affected.
6) Is there something you would have done differently?
Everything has gone very well so far. I might have done a few things differently in my professional life: I originally wanted to pursue a career in management, but I realised that I’m an absolute technician. Now I’ve arrived where I feel absolutely comfortable.
7) What keeps you motivated?
Take a break and do something that does me good. To think again about why I’m doing what I’m doing: I simply find doing new things and new technologies really exciting.
My illness motivates me to develop professionally. The amount of work I’m doing now won’t be enough in 15 years’ time. That’s why I have to lay the foundations today, so that I still have enough scope to organise my care later on.
8) A lesson learned?
My mum always thought about how things were going to go, e.g. how we were going to get to a meeting point, where we were going to park and so on. So, I thought: “The better I plan, the better it will work out.”. I wanted to plan everyday life completely, but many things could not be planned, many unplanned things came my way. I realised that even if I didn’t plan everything through, it still worked somehow. If you plan everything and it all works out, then that’s great. But if something goes wrong, then it just works differently. If one element in the chain doesn’t work, I always say to myself: “I can still go on, there’s still an option, there’s still something I can do.”
9) A word of advice?
Don’t let others tell you what works and what doesn’t. You get to know yourself much better by trying things out. You definitely have to try things out.
You have to learn to recognise your own limits and sometimes overexert yourself. You shouldn’t allow yourself to be pigeonholed, either by people in the same bubble who also have a similar disability or by people who are on the outside. As individual as the illness or disability is, so individual is the solution.
“I’m actually very proud that my image of what inclusion means for society (with mutual support from the people you spend your everyday life with anyway) works. I have had very positive experiences, even if I know that it is not always understood or supported by other people affected. ” – Josef Fleischmann
10) One last word for the end ?
Some people on the outside feel sorry for me, but I’m really doing very well, I have a very good life.
The circumstances I’m in have come to the right person. In terms of my mindset, as a technician, I can deal with it very well. In technology, you’re always confronted with problems. You have to develop technical solutions. That’s why I’m also very solution-orientated when it comes to my illness.
I also have the perfect environment: a great family and friends who support me, and I live in Germany. There are still stairs in this world, but we are working on it. Everything is becoming more accessible.
Picture by Josef Fleischmann