Bastian K. is a summer person at heart. He enjoys spending time with family and friends. In doing so, the lack of accessibility often causes him more difficulties than the progressive muscle weakness he has been living with for many years. When he is not on the road, he writes about his "life with PEG" on his own blog. On REHACARE.com he tells us how he rolls otherwise.
Name: Bastian K. Age: Always 29 [winks] City: Ilmenau, Germany Occupation: Entrepreneur and journalist Impairment: Spinal muscular atrophy type II
Bastian K.: A good day for me starts refreshed, healthy and with time for myself. Afterwards, it is productive, but stress-free and relaxed. Filled with interesting contacts and experiences. There is also time to study and spend with friends or family. At the end of the day, I'm a little bit better and further along than yesterday's me. Oh, and of course, if the day is warm and sunny, that's a big plus. Because I am an absolute summer person.
Which auxiliary means or daily living aids are indispensable for you?
Bastian K.: In fact, my feeding tube [PEG, editor's note]. Without all my other aids, such as the wheelchair, the nursing bed or the patient lift, life would of course be much more complicated and tedious. But I could somehow compensate for all that with a little brainpower and commitment. Without my feeding tube, however, I would die sooner rather than later.
What would you like to see from society and your fellow people in dealing with people with disabilities?
Bastian K.: More openness and encounters at eye level. In the meantime, I live in an environment where I feel that this is the case. However, whenever I leave my own "bubble", I notice how far behind society (in Germany) often still is.
Which assistive device would urgently need to be invented and/or improved?
Bastian K.: I think there are already a lot of very great tools. Often without us knowing it. That's why we have to get an overview from time to time, for example at REHACARE, of the useful little helpers that are now on the market and from which we can benefit in our individual situation.
What I am convinced of, on the other hand, is that we urgently need to improve accessibility in our society, in our everyday lives. It can't be that in 2022, in one of the richest countries in the world, people in wheelchairs won't be able to travel independently by train, or that every outing with friends first requires extensive research to find out whether the intended location is accessible at all and whether it is possible to use the toilet there, for example.
Bastian K. not only leads a self-determined life – at his blog "Leben mit PEG" he also tells people about it.
What has been your biggest challenge so far that you have mastered – and what has helped you?
Bastian K.: It's difficult to pin it down. We are all confronted with challenges from time to time in our lives. No one is exempt from this. But we are all different. What one person perceives as a challenge may be child's play for another.
In my life, too, there have been situations that have challenged me. Be it health-related, organizational, physical or emotional. In addition to support from one's own environment, the most important tool for such situations is certainly one's own mindset, one's inner attitude.
What can the assistive technology industry learn from the Corona pandemic to make life easier and/or better for people with disabilities in the future?
Bastian K.: I think we've all learned from the COVID-19 pandemic what a fascinating age we live in. So much is technically possible these days. But we also have to be ready to take full advantage of those possibilities.
In addition, I think we can all learn from the last two and a half years that things don't necessarily have to continue in the same way just because that's the way they've always been. We all need to be open, and I include the medical device / aids industry in this, to being pragmatic and thinking outside the box.
If nothing would be impossible: Who would you like to meet one day and why?
Bastian K.: "Q" from James Bond. I'm sure he could deliver some interesting gadgets without me having to deal with the health insurance company about covering the costs. [laughs]
What was your best REHACARE experience?
Bastian K.: I can't narrow it down to a single experience. It's just always nice to see what interesting, and sometimes very surprising, ideas clever minds have had since the last time to improve other people's lives.
What I wanted to say ...
Bastian K.: I would like to take up the cudgels for assistive devices. Time and again, I see that people are reluctant or even afraid of assistive devices. This applies to both the "classic" aids, such as wheelchairs, and also something as special as a feeding tube or respiratory support. Of course, this behavior is absolutely understandable.
Often, assistive devices are seen as a symbol for the loss of one's own abilities, possibilities or self-determination. But this is a fallacy. Because in reality, the opposite is true. Assistive devices give us back exactly that. After all, they are assistive devices. In other words, means that are supposed to help us master a situation. And they do. At least, if they are the right tools.
Of course, that doesn't change the fact that we can't do something ourselves as we used to. But nowadays, with all these great aids that are now available, that no longer really plays a role in our everyday lives.