Breaking Barriers in European Disability Advocacy with Katrin Langensiepen

Katrin Langensiepen, the only visibly disabled woman in the European Parliament, joins us to share her compelling journey toward disability inclusion in European politics. Discover how Katrin is pushing boundaries within the institution, advocating for rights and accessibility despite the hurdles. Her efforts to champion the European Disability Card illustrate her dedication to creating a more inclusive society, emphasizing the card's significance in improving access and recognition across member states.

Uncover the economic potential of disability inclusion as we explore arguments for supporting independent living for people with disabilities. By making necessary adjustments, there's a promise of economic gains through increased tax returns and diminished reliance on government services. However, without robust methodologies in research, driving change remains a challenge. The episode also highlights the importance of solidarity within the disability community and the power of intersectionality, drawing parallels with other rights movements.

Media narratives play a critical role in shaping perceptions of marginalized groups. We'll examine how systemic barriers and negative portrayals hinder education and visibility for people with disabilities. While social media offers a platform for connection, it's crucial for political parties and NGOs to step up and facilitate positive change. Through advocacy and media influence, we aim to raise awareness, challenge misconceptions, and drive forward the agenda for disability rights and representation. Join us as we discuss the ongoing struggle and the importance of continued dialogue and activism.

Chapters

• 0:01 Disability Inclusion in European Politics
• 11:47 Economic Argument for Disability Inclusion
• 21:57 Media Representation of Marginalized Groups
• 26:18 Advocacy and Media Influence

Transcript

Neil Milliken: 0:01

Hello and welcome to AXSChat. It's myself and Antonio. Today, Deborah is unfortunately not able to join us, but I'm delighted that we're joined today by our guest, katrin Lackland-Steeplen, who is an MEP for the Greens EFA Group in the European Parliament. So, Katrin, great to have you with us. I know you've been doing some great work on disability inclusion in the parliament, but if you'd like to tell us a little bit about your background and the work that you're doing as an MEP, that would be super.

Katrin Langensiepen: 0:33

Thanks for inviting me and hello everyone. My name is Katrin Langensiepen, I'm 45 years old, from Germany, and since 2019, I'm a member of the European Parliament for the Greens. Since 2019, I'm a member of the European Parliament for the Greens. When I arrived in the House, I realized that I was and again, I am the only disabled woman in the whole House. Of course, you must be careful with is it visible? Is it not visible? Maybe there is someone? But what we the disability community in the house, in the NGOs, but we know we are now three disabled MEPs means it is a privilege, means it is, of course, very sad. Where are the disabled people?

Katrin Langensiepen: 1:21

Why is it so difficult to get into power, into politics? When I started with politics or doing politics, I was focused on sort of justice. Don't forget maybe we will have it later about it Diversity wasn't really a topic. Diversity 10 years ago, 15 years ago, it was what that it is like? Oh, you're so selfish, you want to put yourself into a spot or spotlight, and who needs that? And so I had no real view on that or that I have to push for. And 2009, germany ratified the UNCRPD and when I came into the European Parliament, it was a topic diversity, inclusion in parliament. It was a topic diversity, inclusion and I was convinced, or more convinced, to have an eye on disability rights as well.

Katrin Langensiepen: 2:12

It's always the question you want to have to focus on your own identity. Do I have to do or work or have a focus on disability rights or something? You do something completely different, and I decided I want to do both. Uh, timely, sometimes a bit a lot of work, um, but I I'm now like I have the power to achieve something. Of course, I don't change the, I don't want to change the world, but to push here and there for more disability rights. It's a human right and, you see, it comes. Yeah, our rights are in danger every time, and so what you have achieved, that is sometimes little steps and other people must judge or decide. Was it far enough? Yeah, maybe in a nutshell, about me and my work.

Antonio Santos: 3:15

, when you arrived at the European Parliament, was the institution ready for you?

Katrin Langensiepen: 3:31

They knew that there will a person with disability. I'm not a wheelchair user, I'm a smaller person and I have a visible disability. So I said, okay, maybe my mailbox is on the level of my nose and not somewhere three meters higher than I am, and of course my mailbox was not really accessible. I didn't know the house so I couldn't really give an answer to say what you need you have the view on, oh, there's a person with disability, we need a ramp, we need a wheelchair or an accessible toilet room, but then you have a wheelchair user-friendly space but not really accessible, and it took me one period to get automatically access to my voting machine needed.

Katrin Langensiepen: 4:12

Yeah, we have heavy chairs in the Strasbourg plenary room, so I would like to move my chair, my seat, so I have my own chair that I can move. And that was a fight to get accessible rooms for visitors. Brussels is the unaccessible or most unaccessible city in the European Union. So even if the house is quite accessible, it's very difficult to get an apartment to have access into bars, into restaurants, buses, trains. So there we are, far away from UNCRPD.

Neil Milliken: 4:47

It's very interesting that the organizations that make the rules don't necessarily apply them to themselves. I know that you've been. You said you were downplaying, actually, I think, the work that you've been doing in terms of you're saying you know you're implementing small things. You worked on the European Disability Card. Could you tell people about that, because just brokering any kind of agreement across the member states is a significant achievement in itself. So can you tell us about the task?

Katrin Langensiepen: 5:16

The Disability Card is what we fought for and the movement, or parts of the movement, for 30 years and it was a part of the disability strategy and finally, finally, it had a legal base. So normally we get papers from the commission and say, oh, we would like to do something, but it's not really really concrete or it has a legislative thing. The disability card is what we have achieved. The disability card is what we have achieved and I always put a bit of water into the wine. As long as our cities, villages, places where we are not accessible, a disability card will not solve that. The European disability card must be a card that persons with disabilities can get if they want. So it must be voluntarily, it must be for free and it's not up to the disabled person to fight for to get it. It is the admin or the place that's distributing it to send it or give the information. With that card you can use services and transport buses, trains, national trains, local trains not longer than three to six months of the country you are. It is. I recognize your disability. I compare it with the driving license. I am in Germany. I have no speed limit. In Germany, I can drive as fast as I want. I have a German driving license, I go to Belgium, I cross the Belgian border. There is a speed limit, so I have to stick to the Belgian route. And that is the same with the European card. When I go to Belgium, I have to check okay, can I use a bus, is it for free? Can I take my assistant with yes or no? And then I have the same rights like a disabled person in belgium, or I can use the services.

Katrin Langensiepen: 7:18

We do have countries in the members. We do have countries in the european union. They don't even have a national card, like the Netherlands, like Belgium, and now it is. Oh, what about the status, the recognition, and that is a general problem that when it comes to social policy, it is up to the member states and we have no real harmonized status. Let's say and that. But this is the history of the European Union. It is based on economy and money and not on people want to move from A to B and how can we get the same pension or later, for example, or minimum wage, and that is the same with the disability card.

Katrin Langensiepen: 8:01

All this is a recognition, but it's not on status, and that also worry about, or persons with disabilities were very worried about. Oh then I will lose my letters or my. I don't like the word privilege, but they always call it that I will lose my privileges. It's not a privilege. We are not talking about privileges, it's about rights. That is first step. Step, what I said. Far away from perfect, far away from cool, but it shows you cross a border and you have the same right, nevertheless, you are German or French or I'm thinking back to when the UK was a member of the European Union.

Neil Milliken: 8:43

Back in the mists of time it was a bit like the EHIC card, the health insurance card. You would take that when you were traveling and you would be able to access the services in each of the member states based upon the same kind of principles as citizens. That makes perfect sense to me. I would love I think we all would that things would be more harmonized across the globe in terms of understandings and rights to the supports that people need to be able to participate equally. But we've got a long way to go. In fact, we need to be defending the ones that we already have right Before we go looking for new ones. We need to defend the existing ones. You also mentioned the European Disability Strategy that runs per decade, and so we're halfway through a decade and we're just at the beginning of a new phase of the European Parliament, parliament. So what are the the things that you're looking to do or hoping to do in this new parliament to?

Katrin Langensiepen: 9:54

align with the second half of the decade strategy. I think what one of the the most important topics, or what the people in europe or in the world say um, or are really worried about, is housing. Can I pay my rent? Can I pay my costs? And here, how can we support the member states?

Katrin Langensiepen: 10:11

Means what does it mean for disabled people to find an apartment? What I said, brussels is a disaster. Can I live in a commune that I have access, not even to my apartment, but to the apartment of my friends, when there's no lift, when we have no real access to? I think that is one of the most crucial questions we have to be aware of. As you said, now we have to defend what we achieved and in the house, it is a fight that we have to invest into defense, defense, defense, defense is important. Yes, we are in an international, real complicated situation. We have the war in the Ukraine. What about Russia? What about the US? Of course, to defend your country and defend your continent. But, of course, when we are talking about defense and competitiveness and the two crucial words you hear every day from the conservatives means what does it mean for disabled people?

Katrin Langensiepen: 11:21

In Europe? We are 100 million disabled people, but it's not a small group. And we are 100 million disabled people, but it's not a small group. And we are an aging continent. So can we finally get access to transport People to pull out of poverty means can we finally get a minimum income, means that we have a baseline for especially persons with disabilities are often in danger to fall into poverty. Disability poverty we call it is that the commission is aware of, and here we need the political voices, we need the disability movement, we need the member states. The implementation of the anti-discrimination directive means but the member states, hi, germany is not really I blame my own country. I'm very, very open to it.

Neil Milliken: 12:19

So because the topics are everywhere the same on what you want independent living. So it baffles me that they haven't understood the economic argument for this, Because if we're talking about competitiveness, actually providing the adjustments and support would actually grow the economy.

Katrin Langensiepen: 12:38

Exactly.

Neil Milliken: 12:39

It would bolster our wealth and health and well-being.

Neil Milliken: 12:43

It would reduce the dependency on other government services and help to grow the economy so that they could divert their money into defense.

Neil Milliken: 12:54

It's not. It's not a zero sum game here, but unfortunately I think that that people see it as such. So we know that when from the uk, for example, the grant funding for access to work, which is the grant to support people in employment, that for every pound spent on providing support for people in the workplace, the government was getting back at least one pound twenty a tax, so that there's not many things that you get a 20 return on investment. We need to be better at making the economic argument for this, but but also doing it in such a way that is robust, because I think that we're quite often. What happens with the disability movement and advocates is that we innately know this to be true, but there is not the good methodology and rigor in terms of how these studies are done for them to stand up to scrutiny or to have the kind of acceptance that these are rigorous enough to be financially justifiable, so they don't pass what we call the Fiesch test.

Katrin Langensiepen: 14:11

Yeah, we are not seen as customers and clients. That is now. I'm a privileged position and I can buy what I need, but I know so many people are struggling with health insurance systems, to fight for basic rights and when we ask where are the disabled people in politics? You need the time to run for a seat, to participate in the party, to have the possibility to travel where a party meeting is. Traveling to Brussels every day, every week, is not really an easy thing. So I can understand when people say I don't want to jump into it because it's so difficult and tiring and all the political games they are playing. I don't want that.

Katrin Langensiepen: 15:07

But the reasons are different. Why and here we have still the situation that persons with disabilities, under special guardians they have no right to vote in the European Union. Even in Germany, it was forbidden until 2019 and nobody understood why. And you have to bring every case to court, to the highest court in Germany, every single article. You must bring them to court because we haven't ratified the optional protocol. That is our problem and it is. Oh yeah, we have new and COPD, yes, nice, but in the end you have to bring it to the court and call for justice, and that is a long way.

Antonio Santos: 15:49

Again, following on that to you what path do we need to follow in order to have people with disabilities more represented and more heard? What I mean more heard, I mean more than by themselves, because sometimes there are many situations where organizations that represent people with disabilities are not really represented by people who are disabled. So how can we navigate into that?

Katrin Langensiepen: 16:19

I criticize that very loudly. So there are many interests and the social business. Let's say it's for some very efficient business. And why are changes so hard and difficult? Is because the systems benefiting will not give up power and narratives. I don't want to look that far and say, oh there's the evil finance minister. No, no, it's very, very close to us.

Katrin Langensiepen: 16:47

You mentioned the disability movement or the people with disabilities. Our problem is that we are not solidar amongst each other. Are we solidar? Am I solidar with the deaf community? Am I solidar with the blind community or other way around? Are we solidar and have one demand to say we go and demonstrate and support each other and fight for? I don't see it in Germany, I don't see it in France, I don't see it in other European countries.

Katrin Langensiepen: 17:23

If you have met the big movement, please let me know. And that is our problem. Everyone is fighting for his or her single little dish. As long as this and this and this is not there, I am not demonstrating for blah, blah, blah. I say come on, um.

Katrin Langensiepen: 17:41

Where is the women rights movement? Why is a women rights movement? What I see so white? Why are not the? Why is the women's rights movement? Why is the women's rights movement, what I see so white. Why is the women's rights movement? Women's rights councils, loud activists on social media are not sharing the power and say, oh, what about disabled women? What about disabled girls? So it is about power sharing. It's about narrative who's right and who's wrong.

Katrin Langensiepen: 18:07

Not everyone say, oh Katrin, such a cool idea with a disability card. I have critics behind me say was a shit idea. So yeah, of course, not everyone likes it or can use it or want it. So we are not the voice and that is our problem. I compare it to the queer community voice and that is our problem. I compare it to the queer community. They are beating behind the the scenes. They are beating and fighting against each other behind the closed doors. That is okay. I can criticize you, you can criticize me, perfect, but please not in public and please stay solidar and be one voice. So I don't blame the non-disabled white person who's ableistic. Please clean your own house or clean in front of your door. So very critical with yourself and your behavior and your own ableistic behavior.

Neil Milliken: 19:03

Yes, one of the disabilities is completely intersectional but at the same time also completely fragmented, and so there isn't a unified identity. So they could say that sometimes, in times of difficulty and challenge, you find strength and you come together. You come together, and I wonder whether the backlash against diversity, disability, any of these kind of topics that is coming right now, will help focus minds somewhat to realize that we need each other to be able to defend our existing rights and to push back against the ableism that is being pushed very hard right now. There was a joke saying that Canada was never united before, other than that they weren't American until Trump decided to introduce tariffs, and apparently all of Canada is united. Yeah, yeah, maybe in the adversity that we as a community are facing and our friends are facing across the Atlantic, we have something that can unify us as a cause and we can find commonality. You've got an event coming up in Berlin in in a couple of months yeah, yeah yeah, the global disability summit.

Neil Milliken: 20:31

Are you participating? Yeah, great, I will be there. I will see you there too, but I'm um, but I'm interested to see whether this will be a hot topic because, uh, even if it's not on the formal agenda, it's, it has to be something that will be discussed on the sidelines, because it's uh, you know, what's happening right now is is existential for some people. You were talking about people not having a social, social safety net around disability and the disability tax that people pay in Europe. When we're on social media, it disturbs me, but what I see in my feed is people begging to survive. They've set up the GoFundMes and the Venmos and they cannot afford to live, and so they're having to go onto social media and beg for people and they say it's mutual aid, but it's borne about by a system that doesn't value their lives.

Katrin Langensiepen: 21:40

It's more and more neoliberal. We see we have a conservative movement now in Germany we have Friedrich Merz, who is, of course, not cooperating with the far right, but he was looking for support. And you see it every day in the media. You see and hear the narratives against the weakest people. Let's say, Migration is the non-stop buzzword every day the media. So what is the reason for? We have several reasons. Where the people? We have a media narrative. You have, of course, an education problem.

Katrin Langensiepen: 22:22

When I have no access to education and I don't know my rights and I cannot read or I don't understand the text, then it starts in the beginning. When we are in a community, I say it's better you are safe and dry and happy than I am far away from. Social media was opening doors to me when I was a teenager and I finally could meet people like me, other disabled people in my generation. So social media helped me a lot. But of course, the responsibility to go for it's up to the parties. Where are the people, the NGOs, to share power, to give power, and that is the moment where people open doors to me and say we want you, we want you there. So the the reasons to ask why we are not really visible. It's different. I would say it's systematically. It's your family, it's your and that's everywhere the same. When I talk to disabled people, the story is actually always the same.

Antonio Santos: 23:28

So go on, antonia. And how do you see that the fact, sometimes the representation of people with disabilities within the media, within the cultural space, impacts that?

Katrin Langensiepen: 23:40

We are almost not visible. Our topics are not visible. What I said when I became a member of the European Parliament and the corona pandemic started and I was at home and I started talking about oh, I'm a person with a disease, with a rare disease, what happened to me when I don't get access to the healthcare system? And I connected my position with my personal story and then suddenly it helped. I got feedback from journalists to say, oh, that is interesting. It was interesting because I had a position in the house and that was a nice story. That is how media works. If I like it or not, it works like that. I took it as a chance to say now I have the possibility to raise my voice and share my position with other voices of disabled people, but it's really, really hard. We see it not only for disabled people. We see it with migrants. Refugees. Are they in the talk shows? What about when it comes to women's rights? Where are they? And there is no will.

Antonio Santos: 24:49

How do we know? I can give you an example Portugal is recently there was some news is a relatively safe country. So is Ireland, but the right side was able to bring a lot of noise around immigrants. Immigrants are the problem. Even when you go to the data and to the statistics, it's actually the opposite. Okay, However, that comes to the narrative, that comes to the news, that even opens news stories at 8. But then if you go, Portugal is a country where the aging population is very prevalent. Why? We see things in front of us every day where journalists talk about things that are just noise and they don't match to the social reality. At the same time, we don't bring the important issues, the ones that are real, into the front pages.

Katrin Langensiepen: 25:43

Yeah, it is not really interesting and the communication works by fear we could talk about every evening in our media in our countries about, oh, what's positive. But it's not working like that. It's on drama, it's on fear. That is how the platform works, how Twitter worked, how they work and how the parliament now works Defense, defense, defense. Here to fight against, to raise a voice. It's possible, but it's not easy and that is a relevant problem. And media plays an important role in that game.

Neil Milliken: 26:30

Of course, yeah, thank you, and thank you for making that effort to raise your voice on behalf of others. Really appreciate the efforts you're making in your professional careers as an MEP, but also thank you for coming on today and sharing that with us, and you also need to thank our friends at Amazon and MyGlittex for keeping us on air and keeping us captioned. Thank you, look forward to continuing this discussion online on Access Chat shortly, which is now on Blue Sky folks, because that's the place to be. It's free. It's not controlled by oligarchs.

Katrin Langensiepen: 27:13

And see you in Berlin.