What makes a day a good day to you?
Kathrin Bay: A good day for me is when I wake up with little pain and therefore get out of bed more easily. When I manage to complete the tasks I have set myself without exhausting myself and being "punished" with pain at the end of the day. When I can be outside without freezing, all the assistive devices work and I can spend time outside with my pets.
Which auxiliary means or daily living aids are indispensable for you?
Kathrin Bay: My knee-high socks are the most most important thing for me. Due to my nerve disorder, every touch, every stimulus and every movement or muscle tension is associated with severe pain. My knee-high socks, which I wear day and night, ensure that I don't feel my trousers, the wind or a blanket too much.
The second assistive device that is incredibly important is my wheelchair with an electric traction device so that I can move faster than walking speed without a car. This means I can drive to nearby therapies or the shops independently and walk my dog on my own.
The stairlift ensures that I can get out at all. My electric handbike exercises my upper body, as I can't go swimming due to the pain. Jackie, my assistance dog, is my everyday companion. She gives me the courage to go out among people because she blocks me, recognizes stress early on, indicates it, then goes into a physical contact task (putting her head in my hand, jumping on my lap and putting her head on my shoulder) and thus relieves or prevents a lot of stress and therefore also pain.
What would you like to see from society and your fellow people in dealing with people with disabilities?
Kathrin Bay: I would very much like invisible illnesses to be taken seriously and for me not to be judged. I don't want people to judge me or decide for me what I can and can't do. I want to be allowed to decide without explanations what help I need and what is good for me. And I don't want to be overlooked.
I want to be treated as a fully-fledged person who is met with interest and not with prejudice. I would like to have the freedoms that other people take for granted. I would like to travel independently by bus and train without having to rely on help and having to share my space with bicycles, luggage and baby carriages. I would like to be able to get around cities in a relaxed manner, attend events with my assistant person without any problems and lead as independent a life as possible.
Which assistive device would urgently need to be invented and/or improved?Kathrin Bay: I can only speak for my illness and I think that there are enough assistive devices and they are generally very good. Unfortunately, the real problem is that they are often prohibitively expensive and there are far too few quick repair options. Delivery times are often incredibly long and there are no replacements if they need to be repaired. In addition, therapists and doctors often have little knowledge and cannot give any advice on what might help. This also includes "little things" such as suitable wheelchair clothing or shoes that keep you warm.
