The choices are not equal

Dear Debriefers,

Along with thousands of others, I'm headed to Berlin next week, for the Global Disability Summit.

I've heard some good things about accessibility of Berlin's public transport. But the overall situation of disabled people in the country has a troublesome side that will be invisible to us as visitors. And it is in stark contrast to the mission of the Summit itself.

Even though Germany has committed to a modern approach to disability rights – based on full participation and life in the community – it still segregates hundreds of thousands of disabled people in housing, education and work.

In order to understand why segregation endures, I spoke to Raúl Krauthausen. As well as being a fellow newsletter-writer, Raúl is an outspoken activist, challenging the ways disabled people are isolated from mainstream society.

This article is my conversation with Raúl. He shows the origins of this exclusion, the dynamics that perpetuate it, and how it can be changed.

Peter Torres Fremlin is editor of Disability Debrief and is from the UK.

Kinanty Andini is an illustrator and digital artist from Indonesia.

Disability Debrief is published through a pay-what-you-can model. Thanks to Mummy Fremlin for a generous new contribution.

Statistics on segregation in Germany

Before we start:

Understanding the numbers. Germany has a population of 83 million people, and 7.9 million people (9.3%) are “severely disabled”.

Living apart. According to recent estimates of institutionalised populations:

• The number of children in residential institutions is 121,000, a rise of 20% on the previous 10 years.
• The number of adults with disabilities (aged 15-59) living in residential institutions is over 225,000.

Special schools. Through primary and secondary school, over 3% of children are educated outside of mainstream education. At primary level this is twice the European average, and at secondary it is 50% higher.

Sheltered work. Over 300,000 adults “participate in working life” in a system of sheltered workshops.

The choices are not equal

This is my conversation with Raúl. We spoke on Zoom and then edited the text for clarity.

Peter: Segregation of disabled people in Germany starts at school, right?

Raúl: There’s no law that directly forces disabled children to go to special schools. But the government, and school offices and so on, always tell parents that it would be better for their disabled children if they go to these special schools. Because of the employees who are working there, or maybe there’ll be less discrimination by other children.

People are convinced of this, without being told they also have the same right for their children to attend regular schools, and a right against discrimination. What they forget is that the career chances children will get are less good when they go to a special school.

Peter: So people are kind of pushed into separate solutions.

Raúl: You have the choice, but the choices are not equal. They are indirectly forcing you by telling you that the special eco-system is better.

Accidentally finding inclusion

Peter: How did this play out in your own life?

Raúl: I had a lot of luck that my parents sent me to one of the first schools where children with and without disabilities were educated together. In the eighties, my parents never had a plan in the that I should go to an inclusive school. The word didn't exist. And my parents were very young, and it was accidental. They followed the footsteps of friends, a family who had a disabled child too.

Peter: Your parents were able to make the choice.

Raúl: I grew up in West Berlin, which is important. I don't know how East Berlin was for disabled children at that time, but West Berlin was a city where the Western World wanted to show the world how good the capitalist system works. And so they invested a lot of money in the educational system and tried different school systems, especially in Berlin. So yeah, I had a lot of luck.

“I understand the worries”

Peter: What would you say to a family that thinks that a special school can look after their child?

Raúl: Well, at first I would tell them that I understand the worries they have. The regular school system is very understaffed and under-financed, and the classes are too big. That's a problem for all children all over Germany, for years now. And families with disabled children are taught that under these circumstances that children will suffer in regular school.

I can't promise them that it won't be like that. And I understand that every parent of course worries the most for their own children. But we have to start somewhere. We need pioneers to change the regular school system. Otherwise, we will stick with separation forever.

Stuck in the system

Peter: What advantage would a child with a disability get from going to the regular school system?

Raúl: Well, there's no guarantee for either type of school. But when you go to regular school, the statistics tell you students get better outcomes. They get better Arbitur [qualifications at the end of higher-secondary], and they get better career chances later on.

And it can happen that you are a clever child but you go to a school where they don't offer high school exams. So you are stuck in the system and you can't get out.

Peter: There's not a pathway to continue your education.

Raúl: The government organizations tell you, “Oh yeah, but the school with the high school exam, it doesn't have an elevator. So sorry, you can't go there.” Or they tell you that their teachers are not trained for disabled children, so it might be hard. And the child might get bullied, or overwhelmed. The system always tells you it's too complex.

Working for €1.30 an hour

Peter: So what do you do next if you're not carrying on education?

Raúl: The next step is you go to a kind of sheltered workshop. It's a kind of organization or company where only disabled people do the work for less than a minimum wage.

For example, they collect, sort, combine or produce things. Like a coffee roastery or candy factory or bottle clearing company, digitalisation of documents, whatever. There are a lot of things these sheltered workshops offer. Mostly the work is done by disabled people and for one €1.30 an hour.

Peter: Jesus.

Raúl: It’s legal in Germany, because it's not declared as work, it's declared as rehabilitation. And a lot of people working in this sheltered workshop are working there for years, or decades, and never get the chance to try something new, something on the regular jobs market.

No way up or out

Peter: I've seen these companies saying, “Look, we're not giving employment. It's training.”

Raúl: Lifelong training. Without any control on if it's really empowering, educating, or is it just using a cheap workforce?

There's no way to, how to say, to step up the career ladder. When you are working in a sheltered workshop as a disabled person, you will never become CEO of the organization. You are always stuck in the less than minimum wage salary and they don't offer you a way out, or a way up.

The problem is that these sheltered workshops are run and led by only non-disabled people. And so it's very hard.

Contradictory to the idea of employment

Peter: Right. And there’s a business aspect to this as well.

Raúl: They are making the contracts with companies. And what are these companies? They're German military or German car companies, buying services like sorting, selecting, cleaning, producing things that someone without disability would at least get minimum wage for.

In Germany there’s a law that at least 5% of your employees have to have a disability [for public and private companies with a minimum of 20 employees]. If you don’t have this five percent, you can contract a sheltered workshop, just to comply. It’s contradictory to the idea of employment.

Peter: One of the tensions is that the sheltered workshops are for people that supposedly can’t work on the open labour market, but they are doing work.

Raúl: When you are in a sheltered workshop, by law you have to at least be able to work to a level of economic output. If the doctors or someone else says you can’t, you’ll be put in another system which is called Tagesförderstätte, a day care. You get daily routines – make art or music or whatever – but without work.

Peter: Does the quota system help get disabled people into jobs outside of the sheltered workshops?

Raúl: Yes it does, but it's too weak. You have to pay a fine when you don’t meet the 5%, but the fine is too cheap. Companies pay the fine instead of looking for employees with disabilities.

“How heavy is your disability?”

Peter: One of the ways the government deals with disabled people is through a category of “severely disabled people”. What does that mean?

Raúl: Yeah, the Germans have the idea of “how heavy is your disability?”. Like, do you only have one arm or are you severely disabled? Do you have multiple disabilities?

This distinguishing is often done by non-disabled people, and if, say, you only have one arm, maybe you are mostly seen as not disabled enough to get certain supports.

And if you are, for example, slow at learning or at understanding, you are seen as so disabled that you can't do anything. And you are put in this sheltered workshop or special school, especially when you have a learning disability and/or a cognitive disability.

Doctors or experts declare you as cognitively or learning disabled and you never would get rid of this label. It leads to the phenomenon that a lot of people with so-called learning disabilities in special schools are those who never had German as the first language.

It’s a very racist problem. When your mother tongue is Turkish or Arabic, you are very easily declared as having a learning disability. And if you’re put in the system as an Arabic child, it’s very hard to prove yourself, to prove that you are in the wrong system.

“We're not talking about you”

Peter: Are you someone that qualifies as severely disabled?

Raúl: It depends who you ask. But I have the highest degree of disability you can get in Germany, yes.

But maybe because of my rhetoric or my ability to speak for my own rights, it would be hard for them to convince someone that I should go to a special school or something else.

Peter: Right.

When I talk to people, most of them say, “Yeah, Raul, I understand what you mean. We are not talking about you”. They don’t mean someone in a wheelchair, they mean people with cognitive disabilities.

I tell them that it’s a big problem when we see it like that. Inclusion isn’t about moving the line from A to B, it’s about removing the line.

Victims of violence

Peter: In these things we’re talking about, are there differences for boys and girls or men and women?

Raúl: That's a good question. Women with disabilities are several times more likely to be victims of sexual harassment and violence than non-disabled women.

And it’s especially so for women in institutions. You are not taught about your rights. And when something happens that's not allowed, the majority of the society will never know that because the system is closed.

It’s called total institution, where nothing gets in and out, like in a prison. The rest of society never knows what happens in prison. And those in prison never know what happens outside.

And when you need information, you always have to go to the CEO or boss of this prison. They tell you who to talk to.

No need to leave

Peter: Tell me more about this other form of segregation, living in institutions.

Raúl: There are many special institutions like schools, housing, and workshops. And there are some organizations where all these three things are in one place, in one district or one building. You might never leave.

There's a city called Bielefeld, which has a district called Bethel. Bethel Foundation is one of those organisations, run by the church, with schools and doctors and rehabilitation and living homes. A lot of people with disabilities live there.

It’s like a special district for disabled people. There's no border and of course you can visit there. They're not in a cage. But everything is offered, so there's no need to leave this place.

From protection to segregation

Peter: Why aren't these systems trying to show these other ways, like mainstream education or employment?

Raúl: The schools, the suburbs, the housing are run by so-called welfare institutions, often Christian organisations. Many of these welfare organisations have been implemented in 1950s.

The idea was to help people in need to get the best chances in their life, like education, rehabilitation, medication, whatever, without giving the state the possibility to institutionalise disabled people. To hinder the State’s direct access to disabled people, as a lesson learned from the Second World War and the eugenics, those terrible things that happened.

So the idea was a good one, to give people with disabilities the best opportunities that are known to pedagogy, medication. And the state pays by contracting these welfare organisations to do it.

But over the decades the existence of these institutions relies on having enough disabled children, people in living homes, taking workshops. There was no intrinsic motivation for the system to get smaller. Your school has to be full to get the money. If you are better in helping students to get in regular schools, you’ll have fewer students and less money. It's a self-fulfilling prophecy.

Peter: So what started with a motivation of protection, has become a business model motivated to continue segregation.

Raúl: And this business model is for non-disabled people. Who runs these organizations? It's only non-disabled people who decide what work has to be done, who educate you, who tell you what you are able to do.

My minimum proposal would be let disabled people decide what to do. And my biggest activist move would be destroy these organizations.

“It will be a lot harder in those countries”

Peter. Tell me about the progress in mainstream society. Is Germany, like other countries, becoming more inclusive?

Raúl: There’s progress happening. Laws for digital accessibility, or public transport systems now forced to be accessible. Or now parents have a right to decide where they want to send their children to school.

Of course there's always the country where it's better or worse. I'm not the one who always says Germany is the worst in everything. You have to look segment by segment.

And I would say, when you need an electric wheelchair, or if you need medication or a doctor, you will sooner or later get the things you need, even in rural areas. Maybe you have to fight a bit more, but you will get it. And when you compare that to, I don't know, Great Britain or United States, it will be a lot harder in those countries.

“Fear of what will come”

Peter: How will the rightward shift in Germany politics affect disabled people?

Raúl: I fear that people with disabilities will be seen more and more as a cost factor. But accessibility is for everyone. We all get older, we all might need accessibility sooner or later, or even if we don't have a disability, more school classes, more teachers will also be better for non-disabled children too.

Peter: Do you see risk of more discrimination or abuse?

Raúl: Of course. Like every minority, we have a lot of fear of what will come. But this is also happening in France, in the Netherlands, the United States of course. Maybe, and that's my hope, we learned more from the past and decide differently than others. Learning from the past would mean standing up for minorities.

“The only solution is confronting”

Peter: To close out, tell us about how you challenges these systems.

Raúl: I've been working in this field for 25 years and I’ve made a lot of mistakes. One of these mistakes is the narrative that we need to educate or convince people that inclusion is a right. That we need to educate non-disabled people that people with disabilities also have the right on playgrounds, schools, whatever. But this is unnegotiable.

I don't discuss things that are unnegotiable. Of course every child should have access to a playground. I don't want to convince anyone of that. I don't want to convince men that women have the same rights. Although I know that there's a lot of discrimination happening, I don't think that convincing is the solution.

The only solution is confronting. Like putting disabled children in playgrounds which are not accessible and fighting for accessible playgrounds for all.

Peter: You’re saying the change has to come before we are ready for it?

Raúl: Yeah. And we need to force the decision makers to only build accessible playgrounds. It shouldn't be an option, or as I say in German, we should forbid non-disabled people to opt out of inclusion.

We need more encounter. We need more encounter between disabled and non-disabled people. It’s not a matter of favor or goodwill, it's a human right.

Outro

More about Raúl. Raúl is active across social media - see the links on his website. Highlights of his work include:

• In German, the highlights of his work include a podcast, several books and a newsletter, Sent from my wheelchair.
• In English, he shares a long range of disability news every week on Disability News Digest.
• Check out this profile from Ability Magazine which describes how he went undercover to expose the conditions in a home for persons with disabilities.

See more from Kinanty: find her on Linkedin.

Connect with me. Get in touch. And you can find me on Linkedin and Bluesky.

Let your friends know. Sharing the newsletter is how people find it!

Help us do more. The Debrief is published through a pay-what-you-can model.

Acknowledgements

Many thanks to Raúl for making time for this interview and sharing his insights, especially at a time when he was convalescing.

Thanks to Kinanty for the illustration, and to Celestine Fraser for support in editing.

And I appreciate friends who helped me prepare for this interview, including Catherine, Jürgen, Ina and Susan.

And of course the readers and organisations that support this work.