 Who gets to decide what's normal and more importantly, why? Why even? When we work we often have to make the joke, shouldn't we include some non-disabled people? No, we should not. All the regulations for inclusion and for inclusive education should just be practiced. They are there, but they are mostly not practiced and it should be improved. And this is our experience, that you have to fight for a lot of things that make your life possible. For example, wheelchair is really a part of my day, of my life. If I can sit in there for 18 hours maybe, or if I get pain after 2 hours it makes a difference. Yeah, but in that you need personal assistance, a lot, and I think politicians need a lot of personal assistance in order to get an emotional or rational touch with the real people. Would you consider like a political career in any field? No. Welcome to Standard Time. I'm Reiko Kingopop, your host and editor-in-chief at Eurazine, the force behind this show. Eurazine stands as a unique online publication weaving together over 100 cultural journals and reaching audiences worldwide. We're also proud to be one of the founding partners of the Display Europe platform, showcasing European content in 15 different languages. Today we talk about disability and disabled people's right to self-determination, but let me start by laying out the ground a little bit. What counts as an able body changes throughout history, and even more from place to place. For instance, with my eyesight in some countries I am considered legally blind twice over. That has never stopped me from driving a car. Well, not having a driver's license has. Not having a car even more so, but that's not my point. Disability, physical and mental, acquired or congenital have been with us literally forever. A growing pool of archaeological evidence, some dating back tens of thousands of years, show that amputees and people living with Down syndrome and many others have been integrated members of their societies across historical time. Some people were always born differently, April, and others were injured, hurt or otherwise affected. Disability is not an anomaly, it's simply a part of the human condition. But for disabled people to have self-determination and control of their lives, well that's a tougher topic. Eugenics was an incredibly successful movement which characterized people as either fit or unfit, thinking that any deviation from what they designated as unfit would lead to genetic degradation. At the height of its success, people as prominent as Alexander Graham Bell, a deaf educator himself, argued for preventing the creation of a deaf race by forbidding marriages between people with disabilities, and Bell was actually one of the milder ones. About 250,000 people were murdered in the Holocaust simply for being physically or mentally disabled. Up until a few decades ago, institutionalization and forced sterilizations were usual treatment across Europe. Today the situation in the European Union is vastly different. The EU guarantees a whole set of rights for disabled people and has initiatives like the EU disability strategy. Activists, self-advocates, NGOs and communities have played the biggest role in improving the situation, but it's still far from a bed of roses. Disabled people face a higher risk of poverty and social exclusion. In Bulgaria, up to 50% of people with disabilities remain in socially dysfunctional situations. Estonia, Latvia, Lithuania and Croatia also record figures up to 40%. Women with disabilities in Europe also face a range of tough challenges. Disabled survivors unite, a UK-based disability rights NGO revealed that women with disabilities in the UK are more than twice as likely to experience violence and abuse than others. They have a harder time finding a job and when they do, they tend to earn less, have fewer chances to study and struggle more to get the healthcare they need. Many live in households where work is scarce, especially in countries like Ireland and Belgium. And even those who do have jobs, like in Romania, still face a high risk of poverty compared to their peers without disabilities. Medical needs are another pressing concern. About 7% of women and 6% of men with disabilities in the EU report unmet medical needs, with even higher levels in some countries. A mere 2.3% of senior officials or managerial positions are held by women with disabilities. Today's guests lead the charge in this uphill battle and they do not apologize for wanting a fair treatment. Bernadette Feuerstein is an Austrian disability rights activist and public official, known for her contributions to disability rights here. She has been playing an important role in the Austrian disability movement, including her involvement, creating a barrier-free Austrian documentary on the topic. Balte Matis is an actor, art therapist and a cartoonist. He's also a community worker and theatre trainer who has worked with people with addictions and in penitentiary facilities. Maria Dinalt works on the integration of people with and without disabilities into cultural life and to promote social inclusion through artistic activity. She is a deputy chairperson of Ich bin okay Association. She is also the president of both the Austrian branch and the European Association of Adopted Physical Activity. So let's see what it takes for disabled people to take matters into their own hands. Very welcome and thank you for coming. The most spectacular part of disability integration are physical accommodations in buildings. These actually make everybody's life easier. I'm sure that it will be a benefit for everybody. The Vienna underground system had the old cars with a step. Now they have the new ones without step. And it's for everybody, it's easier to get out and get in. And so the Vienna Linea, the public transport systems, they save a lot of money with this. Is disability actually that rare as we sometimes talk about this? I think the quote of people who are born with disabilities is not so high, luckily. But there are so many other incidents that you can get disabled. But it is the society who is responsible to help. I think the important social thing is that the children are included and are seen as equal as other children and other persons. All the regulations for inclusion and for inclusive education should just be practiced. They are there, but they are mostly not practiced and it should be improved. Normalcy or what we consider an able body is an arbitrary thing. So it changes over time, the standard really changes. I wonder if this argument in your head rings true about it. I'm used to wearing glasses and wearing a prosthetic for a lifetime. I'm born this way and because my kind of disability, you cannot see it at the first glance. So very often there was no problem at all. I was kind of integrated at all. The prosthetic stuff, it improved I think every year and now it improves every month. New materials, new technologies, I have a sensor system. Many things are great, evolving very great, but I think in the conscience of the society, there's a lot to do and we have to present us as disabled people. We are here, we have to be visible. Bernadette, do you think disability is visible enough? Do you find representation enough? For my opinion it's not visible enough, but it's improved. When they built the underground system, there were only two stations who had an elevator and it wasn't allowed to use the underground with a wheelchair. So it was necessary that the community of disabled people may protest against this and we did strikes and we blocked buses and so on. And with this system people have the possibility to get out, to move around and so they have the possibility to be seen. The understanding of disability is more wide, it grows. For things to change meaningfully, you need it to protest, you need it activism. So it's not like the benevolence of the state. Activism in self-advocacy plays a crucial role in pushing things forward. The community has really a very powerful and important role. I recommend everybody to visit the parliament in Vienna. It's really a very good example of accessibility. There it was an international day for people with disabilities and we were thinking about that, I don't know, maybe 30 years ago there was a hunger strike in the parliament to get equal law for people with disabilities. If I may add to this, I think if you are a person with this consciousness of disability but there are people, children or people who cannot speak for themselves. That's why the society has the duty to acknowledge the rights and of course if you can do it yourself, it's more effective because then they see exactly. But often the politicians, they don't want to see, when I teach my students I always mention, okay there is no special needs, everybody has special needs because he is an individual and that's important I think. I used a wheelchair for about two months when I broke a leg and then you become very aware of the built environment around you. It was just such a harrowing experience and this can happen to anybody at any time but Maria you also work specifically with physical education and dance and creative movement and you work towards the integration of people with disabilities and very different abilities in culture so that it's not some peculiarity. Can you tell us about this, please? Yes, I think with our association, I've been okay, it was founded more than 40 years ago the founder was Catalinsanin, she was from Angkor, you know people with disabilities can also dance and they can express themselves. They have their special expression and they have their gifts and their need to express themselves and to move and to show what they can do to put them on stage and put them in the view of the society. We do have an actor here with us in Walter who is, you know, is human. You pass, you know, you don't show like very visible signs of disability having been born with one and you are a successful actor. Does your experience as a disabled person play a role in your art? I think maybe I have a special sense for justice, exclusion, inclusion. This is a topic, I think, I feel this all the time. I work with an acting company with disabled people also. They are now founding a kind of academy for an acting school, acting academy and I'm one of the teachers. When we work we often have to make the joke shouldn't we include some non-disabled people? No, we should not. And the needs are so normal. There are no special needs. But does this kind of social connection that you mentioned, does this come with anything special that you observe you pick up on? I read about children, asking children, staring children. I know this very well. I often go to the children, what's up? What do you want to ask? But when I was a child and other children asked me, I didn't really feel comfort. Yeah, and many people talk about inactivist communities and marginalized communities that they don't want to have to educate everyone in the street. You don't have that level of energy all the time. Bernadette, do you sense this? People expect you to explain everything to them? Like I am forcing you now? Yeah, that's correct. Sometimes I tell them interesting stories I just invented. I will not ask anyone how it's possible to have sex. That's the weird thing. People ask about such intimate things. It depends on my mood how I answer. For me it's one of the most important things that you let the children grow up together. I was in the luckiest situation that my parents take care that I go to a regular kindergarten and primary school and gymnasium. When I compare with my other colleagues, with my disabled colleagues, they had, sometimes when they came out from institutions, they had so much to do to overcome. We are very thankful to our partner, the Alte Schmide here in Vienna for their support hosting the show. Located in the city's heart, the Alte Schmide is more than just an art venue, it's a thriving center for culture, bringing together a lively community of artists and intellectuals. With its commitment to contemporary art and literature, the Alte Schmide offers a lively forum for exhibitions, readings and interactive workshops. To discover more about their exciting events, visit thealteschmide.at Bernadette, you are one of the important bull-bearers for this goal of self-determined living. In English it's called independent living, and we say it's easier in German, self-determined leben, self-determined. I do not need a doctor or a nurse or who else a physiotherapist to tell me what is good for me and what I have to do. I know by myself how I will arrange my life, how I will organize, and for example I'm here today with my personal assistants because I need a lot of assistants. I will not be live alone, but with the assistance of a personal assistant. Maria, when you worked with disabled dancers or not just dancers, anybody interested in movement, that means that they have a physical disability but they don't want to abandon physical activity. They want to have control and proficiency in this and they want to express themselves. I think the question is the difference is if you have a permanent disability, I think you cannot be healed. There is no therapy to get non-disabled, but you can also get a lot of improvement of quality of life. In our association we have many of these young adults, most of them then work in this sheltered workshop. They like to come to the dance and in the afternoon they are allowed or in the evening, but when we go away for taking them to Special Olympics or to some event, they have to get permission from the workshop and they don't allow more than a certain amount of days. Just yesterday I had a discussion with the mother. The child, the girl was ill and then there was a rehabilitation center and then she left a lot of time for the workshop and so they said, you have to pay for the other days where she is not here and this is stupid because these institutions, they get their money according to their persons who are there and if they lose their person, they lose their money, but the person also loses the place. We always try to be in contact with companies who are offered normal jobs or jobs for those who can work for 5 or 10 hours a day and they are very happy to have their work there. Maybe worth saying that a disabled person doing a job, they are not getting a favor for being able to do labor for somebody. When you enter a new situation, a new interaction and people don't know you in advance, do you have a strategy to introduce yourself or when you would introduce the fact that you live with a disability that people might not see or is that something that you just leave up to them discovering? Is that something you lead with? Oh, it depends on the situation, it depends on the surrounding, it depends on the person. Well, it depends, really, it's improvisation. I improvise. But does this hinder you in a new situation where people don't know you? You said that they sometimes ask stupid questions or gawk. You like to talk to... No, different stories, as she said. Sometimes it's a shark, sometimes it was a chainsaw. Ah, I love it. You teach German as a second language to adults. Yes. Can you tell me about this experience because you work with people who come to Austria and start to learn German as adults, sometimes not necessarily on their own volition being here? You mentioned this? This has to do with my profession as an actor because the normal career of an actor goes this and now I'm here and so I have to find a way to pay the rent. Teaching German is another example that accessibility is a benefit for everyone. So if you use easy language or easy reading, it will not only help people with maybe intellectual disabilities but also people who are not speaking German as a first language. Definitely, it's like the ramps or the elevators for people with broken legs. The same man. So I am aware that there are initiatives specifically in terms of language to provide better readability. That becomes way more crucial when it comes to dealing with institutions. How is your experience in dealing with these institutions? Of course we have the mobility aspect, like the building has to be accessible. Benedett, you're already waving your hands so I think you have a lot to say. I think it's also getting better because authority is understanding that it's important to reach the people they are dealing with. For example, I know from the social ministry we are working there are some pages in easy reading. Those who are working in the healthcare system for and so in culture, it seems important to have the connection between the theory and the practice so that you have a lot more knowledge but you have to adapt and to apply what you learned in the way so that the persons are understanding and can act as they are not. Healthcare sometimes can be a conundrum in its own. So how is your experience with going through these systems? Do you experience any different kind of treatment? Walter, for instance, you? Well, the normal health insurance, they will pay me only the minimum, maybe just a stick, the insurance for pension. They will pay me some better advice for this system, for this sensor system, for this sock that gives me information about the contact to the floor. I had a lot of phone calls with health insurance that I want to have this, I need to have this. It's good for me so that they pay for it. This was a process, yes. But you have to fight for these things? I had to fight. Well, you have to really put effort in it. And this is our experience, that you have to fight for a lot of things that make your life possible. For example, wheelchair isn't, it's really a part of my day, of my life, and if I can use it or cannot use it, then if I can sit in there for 18 hours maybe, or if I get pain after two hours, it makes a difference, yes. Additional to the normal social welfare, there is some associations like Lichtenstunkel who allow the people to get more. There should be more responsibility of the regular social welfare to allow special equipment for those who need it and not to go and bid and have private sponsors for this, yes. I think Austria is one of the most richest countries in Europe, or I don't know, and it must be possible that everyone gets the maximum of support what is needed. Who should be the judge of this or what would be the appropriate procedure? People with disabilities should, on all steps, be involved in decisions. And I'm sure that it will change for independent living Austria. We try to be involved in important political process, but then sometimes it happens that we put a lot of work and energy and knowledge into a project and at the end the politicians or other authorities listen to us but they didn't change their way. And this is really frustrating. So it's kind of for show that they signal that they have given an audience and then that's it, kind of. Walter, when you say that you have had to fight for your accommodations and this is an ongoing thing, do you meet with people on the other side who understand your situation? Is it the institution more or is it the people more that keep you back or give you a hard time getting through to what you need? I think it's part of the institutional kind of life, not to move, not to change, not to support the people, so just to support the institution, that's my impression. So it's not individual, horrible people sitting there trying to give you a hard time? Hopefully not. But when you get through, do you... Is it a situation where you can actually find allies or is it just something to just march through whatever happens, what is your experience? A bit of this, a bit of that, yeah. I'm talking to people and I get some support and help and comfort and sometimes I have to go through alone, yeah. It would be very recommendable that those people who decide upon this have a broader view. They should look about Europe and the world, how it is managed and how it is possible. Difference between the regulations in Germany and in Austria so that people with disabilities can be employed. There is their regulations, how many in a company has to be employed, if not they have to pay something. One company in Austria pays $55,000 per month because they don't employ people with disabilities and in the same company in Germany, they have regulations more evident so that they overfill their duty. You thought that was all we had on disability? You couldn't be more wrong. We also have an extended conversation with the founder of the active amputee, Björn Ezer. Listen to it on the programme of Gogarin, the Eurazine podcast. When it came for me to take the decision to have my leg amputated against the advice of most medical personnel, I promised myself, as far as you can promise yourself something when it comes to health, that I would not let the amputation stop me from doing things if there's no medical reason for it. I think it would be amazing and something I would like to see is if globally mobility wouldn't be a luxury. In our conversation with Björn Ezer we discussed prosthetics and outdoor sports, policy and advocacy and why mobility mustn't be a luxury. I don't know how much attention you all pay to this but there has been a rise of influencers talking about disabilities and chronic illness in social media and some of them have huge followerships and a lot of people are learning about the intricate details of living with a disability or a chronic illness or any kind of health condition for the first time online. How do you feel about these people? Do you think it's something that helps the situation? Do you think this should happen on a different level? It might be helpful but it might also get into the direction of a freak show. For the young people who get a lot of influence by them I think it could be very helpful to understand the situation and to learn. They probably don't want to learn these things from their parents or from the teachers because the teachers are stupid and they want to do their own things. Is there a specific place that all would like to see more disabled people represented? In politics. In politics, they should be more visible. Our parties, they choose a special person who is responsible for the disability questions. Sometimes they just choose a wheelchair user. There should be a continuous education also to become politician and to stand for the case. I see, Bernadette, you need personal assistance. A lot. I think politicians need a lot of personal assistance in order to get an emotional or rational touch with the real people. Would you consider a political career in any field? No. No, no, no. It's an interesting field but sometimes it's too exhausting. You're doing a lot of work and nothing is changing. Bernadette, what is the political position that you would wish right now? I don't know if I want to take an important political role because you are working in a very complicated system and it's so hard to change anything. Maybe I think Chancellor will be good for me. Okay, I support you. I don't have the right to vote but if I did, you would have my vote. In the municipality we have a commission for their kind of councils for the authority of Vienna. I would like to be there to tell them the new streetcar is a catastrophe and as an actor I would really like to show them what's going on. Drag them on with you for politicians, for designers for people who decide for us how this kind of streetcar looks. But there is a specific streetcar that you have a problem with? Yes, the new ones there. All the ones there, the floor is leveled and now there is no even ground. Crazy. Okay, that should have occurred to someone quite soon because there are also accessibility requirements there. And not only pirates like me are complaining about, also older people. It's interesting you mention pirates because when we talk about how disability should be more visible there are these very classic characters, theater characters and characters in acting that are by default disabled that's how you recognize them and the pirate would be one of them the veteran would be another, right? Do you find these roles specifically suitable for a disabled actor or do you do you ever get cast in these, any of these? I did in the past, yeah. And how do you find them? Like when you have to sort of play into the character, is this comfortable for you? To be disabled actor is a kind of not disabled it's a special qualification kind of. On the other hand, why should a person with two legs not play a guy with one leg? I think in most of the TV shows there are two less disabled people. Talking about the actors I was thinking about the cultural adaption who is allowed to play what if a disabled person to play a not disabled person if, for instance, a person with Down syndrome can play the person with Down syndrome it's perfect. And also in music and in dance I think I really love to see performances with people who have no legs for instance. I think we have to see more artists with disability in the movies and also in TV. But I think it's more interesting to see Romeo, a blind Romeo I think disabled people can play not disabled people and not the other way around. Thank you so much. This show is presented by Eurazine a platform offering insightful articles from over a hundred partner journals in multiple languages. You can be part of this intellectual journey by visiting patreon.com to become a patron starting at just 3 euros per month. For this you'll get access to bonus materials early releases and future perks. Our show is a display Europe production it's an innovative platform dedicated to presenting content with a strong focus on data privacy and across 15 languages. We are very grateful to the Autismida for hosting us today. This program comes from both the creative Europe program of the EU and the European Cultural Foundation. The opinions and views expressed here are those of the authors and the speakers only and they do not necessarily reflect or mirror those of the EU or the EACEA.