When I look at my own experience in the health system, I see barriers everywhere. When I look at my own experience in the health system, I see barriers everywhere.

What is your group good at?

What I find special and good is that <Platz da!> is really a very mixed group in terms of disabilities but also other characteristics. I also like that we exchange ideas and raise each other‘s awareness. In the so-called disability associations, there is always an association for one particular type of disability. And I find it much nicer that we are so mixed, and I find the exchange and the mutual sensitisation very valuable, and I also notice that the others feel the same, because otherwise it is often very segregated.

What is missing for your community?

A holistic view of people is definitely missing, interdisciplinarity is missing and the perspectives of many different people are missing. If I think, for example, of nursing staff, doctors, certain aids or even medical equipment: if you‘re lucky, blind people are also considered, or maybe Deaf people, but not both together. People then stand by helplessly. Communication doesn‘t work. What do I do now? If you actually need something special, even if you are chronically ill or have multiple disabilities, you quickly fall behind. I would like these different perspectives to be taken into account as a matter of course. I would also like to see a certain degree of flexibility when it comes to forms of treatment. There is often a certain procedure which is almost set in stone. If this doesn’t work for you, then you‘re out of luck.

In any case, the system of flat-rate payments (Fallpauschale) should be abolished. A lot of people are falling behind. Children, older people, people with learning difficulties or people who simply need more time. I always have to take care of my own participation by bringing assistance and the technology with me. I have to explain that first of all. I have to call before and say: “I am coming with an assistant. Give us more time." It helps me that, thanks to Corona, there are sometimes video consultations. But many surgeries are difficult to access. Once I wanted to take a physically disabled friend to see a doctor and just getting into the building was a problem.

One point is very important to me: access to healthcare. We have to think about people who face barriers in the areas of seeing, hearing, moving and learning. In my estimation, there are very, very many people who do not even get to their healthcare because accessible information about doctors and about treatment options is missing. Where are the practices with websites in easy language? Have I ever seen an information video in German sign language? How screen reader friendly are the websites of doctors? Often, many people do not have the opportunity to inform themselves in advance. My demand is that inclusion does not begin in front of the door, but that people have access to the information they need, in the formats they need, long before that. For me, it‘s about beforehand: I‘m at home, I‘m looking for a doctor.

What kind of training and sensitisation would be necessary for staff in the health sector?

With your questions, I notice that the area of qualification and sensitisation of the staff resonates the most with me personally, because this is where I have had the most hurtful experiences. I don‘t even want to know what it‘s like for the people I think about and know when I already have to go through such experiences. It would be best if people who encounter barriers in different areas would themselves work in all areas of healthcare. Actually, the principle of the three Ps in cultural institutions – personnel, programme, public – can be transferred very well. Just like the museum, the hospital in healthcare needs to be made more diverse (and diversity needs to be implemented in all areas of healthcare). But when I look at my own experience in the health system, I see barriers everywhere. As far as education and studies are concerned, I wonder how it is that disability is so little of an issue. Most people are not born with a disability, they acquire it.

I thought about who is really important during and after medical treatment. And actually, it‘s often other people who are important. For example, nursing staff were mentioned earlier. Couldn‘t that be a place where training becomes more permeable? With doctors, we accept that we need them. That a certain knowledge is needed and that certain criteria have to apply. It is said that there are simply limits to who can do it. But I don‘t need more doctors. I need people who accompany me, look after me and support me. And that could very well be people with disabilities.

From my point of view, an important question in healthcare is: How do we treat each other more respectfully? I feel stupid when I ask for something as basic as: “Please talk to me. Don‘t treat me like I‘m a piece of meat. Or a body that is just being looked at." Especially in so-called university hospitals. They are far from recognising patients as human beings and treating them with respect. All that counts there is the education, people come and look at you and leave again. As a patient I want to be asked whether I want to be the test bunny or not, I want to have the choice. There we go again with qualification. Something respectful like asking questions, introducing yourself and your function, communicating with people, has to be part of the training.

For example, there would have to be the possibility to be welcomed, at some kind of reception that is easily accessible. I experienced this once in a hospital. I walked in and the first thing they said was, “Welcome." Just that one word and it made a completely different atmosphere. Maybe it also needs an explanation about what kind of place this is. What kind of place are you entering? Or even a person to accompany you through this whole process, so that you don‘t have to deal with someone else all the time. Yes, the information. “What is happening to you now?” And the question: “Is this okay for you? Is that what you want or would you prefer something else? What do you need? What is your goal in coming here?” And maybe also a reliable, binding person who will continue to deal with you. Or several, a team of two or three people. That you are not always dependent on this single person being there, that you can build up a continuous, trusting relationship. I find that totally exhausting, that you constantly have to deal with someone new and then three or four teams have to tell everything all over again 20 times. But also all this bureaucracy that you always have to carry around. Why isn‘t it digitized and everyone has access to it? Why do you always have to carry it around yourself or inform other people? You could also talk to each other more in different departments. Or there would be this one person who accompanies you, who always comes along and who could inform the other people about the process.

You are always in a powerless perspective and I would wish or demand that patients are seen more as responsible people and not treated like little children who don‘t have a clue anyway. Sometimes you don‘t get basic information or it is repeated in a way that is not acoustically comprehensible to me. Because people don‘t have the time or the patience. And here I would really demand that there are more patient representatives to whom one can complain in case of doubt, and insist that the patients also have a completely different perspective. That there is not such an imbalance of power. Then the patient organisations should be involved or the individual people who are affected should be consulted. Psychological support would also be good in some situations. So that this is not a volunteer position, but that it is a profession, even when you are in hospital or among the dialysis patients, for example, that there are people who say, I know exactly what kind of shit this is. Sometimes you feel really bad and it would be good if this painful time is accompanied by people who have perhaps already been through it or who are currently going through it. Yeah, maybe also that you just get a hug and someone says, “I see you. I know what it‘s like." And I think it should be the same in the medical profession or be anchored in law. And be valued more and also be paid. That this empowerment takes place, that people tell each other about their experiences.

I also like the question of who teaches and who learns. And above all, who teaches has a lot to do with what is taught. As a woman, it is important to me to point out that what is taught still has men as a reference. And here my demand would be to look at the subject matter: Who is being taught, who is teaching and what is being taught? And that would also change with the people who teach, if there were more women, if there were also people who encounter barriers in certain areas, then things would be different. Most people are not born with disabilities, but acquire them. How can it be then that disability or knowing about it is so little a topic in teaching? At least that‘s what I conclude from my layperson patient perspective. I look at my own experiences in the health system and see barriers everywhere.

It would be important to encourage people to take responsibility for their own health. And for that you need knowledge. For that, you need knowledge that is presented in different ways, different approaches, perhaps videos or web-based learning on the topic, so that different people are also taken into account in different ways. Especially people with learning difficulties, especially people without reading skills or people with different needs.

For example, there are people who cannot eat certain foods. People suffer more than they should. And that could also be changed, for example, by allowing different nutritional options even in the hospital or in most education systems. Nutrition in the health system is a major shortcoming. You really have to change your perspective and offer healthy food in hospitals and train people. I often have the feeling that I really can‘t talk to people properly. Or they don‘t talk to each other. Then one doesn‘t know what the other has ordered. And I, as a patient, have to take responsibility for passing that on. I had to learn that first. There should also be training for the patients. What is the doctor‘s job – and what is perhaps not – is something that patients sometimes forget. Or how do I deal with a certain illness? What is important? Yes, all these things that you have to learn bit by bit.

Systemic discrimination is a fundamental problem. And that you are always kept so dependent that you are not empowered. It‘s generally about locking disabled people away. They have to be protected from society and society from them. And when a disabled person appears: Oops, we didn’t pay attention, uh, what to do now?

And then I have the feeling that one is taught, especially unfortunately younger people and women and also people with disabilities: Your world of experience is not acceptable.

You just mentioned cutting down on bureaucracy. I think that many people who are not disabled will have no idea how much effort you have to make to ensure your participation.

It‘s also a mountain of paper that really doesn‘t need to be. It‘s very, very nonsensical what‘s happening and, for example, all these things that you have to submit to get an aid and then you don‘t get it. That is also a deterrent strategy. That‘s where we need to get involved. Solidarity among patients is also important. I learned many things only through other patients or by asking. Then things are possible that you wouldn‘t have thought of yourself. Not only because you didn‘t dare, but because you didn‘t even have the idea that it could be possible. And this perspective is also needed in politics, because many laws are made by people who simply don‘t have this perspective. And I would like to see more multi-perspectivity in politics.

It would be important to change perspectives, to be open to different needs and different people. Society would prefer everything to be homogeneous and beautifully simple. But that‘s just not the way we are socially. There are people of different origins, there are people of different classes and different physical and gender identities. They have to be taken into account. If I want my own needs to be taken into account, I also have to be open to others. I think it‘s really important to have these conversations with people who work in the health sector. To say: I find you enormously strong. What makes you strong, what network belongs to you? What can you teach other people? Yes, to also value the competencies. I could imagine that other groups could also make such demands, that they could be bundled together: What can we improve? What can we change? It is so often about the deficits. But instead we can ask ourselves. What can empower us, what can support us, what can also move us forward as a society? How can we remain human? And how can we support individuals to develop their potential?