Disability rights activist Raúl Krauthausen

ABILITY Magazine spoke with Raúl Krauthausen, a disability rights activist from Germany. Raúl has founded the non-profit ‘Sozialhelden’ and works together with his colleague, Svenja Heinecke, on a variety of projects to make Germany and the  rest of the world more accessible. He talks with ABILITY Magazine’s journalist Karina Sturm about his activism, disability mainstreaming, and why he should be known as ‘the man with the hat.’

12 PM: Food, 9 PM: Time to sleep. A sterile room with a hospital bed. No desk or lamp; just an empty room and Raúl. He had gone undercover to protest against a law that would force people with disabilities into nursing homes if their private assistance is more expensive than care in a nursing home. “Politicians stated that these facilities are just as good as care at home. So we said ‘challenge accepted,’” Raúl says. In October 2016, Raúl Krauthausen became Raúl Frederik. He shaved his beard, cut his hair, used a different wheelchair, and even got rid of the hat he has been known for his entire life. For five days, he lived in a German home for people with disabilities, unearthing a harsh truth: the complete loss of independence from his previously unconstrained life as a person with a disability. 

Raúl’s undercover investigation was mentioned and discussed by German politicians and decision-makers but, unfortunately, did not lead to a change in legislation. However, it has raised awareness of a problem everyone ignored before. 

Raúl Krauthausen’s career as an activist started much earlier. 

Raúl grew up in Berlin and attended one of the first inclusive schools as a child. “My parents put me into this inclusive school without knowing much about it, and that’s where the foundation stone for my career was laid,” Raúl, who wears black glasses and a stylish grey hat, states. After he finished school, he decided to study social and business communication, which gave him a new perspective on his life as a person with a disability. “Throughout my whole life, I never wanted to think much about my disability. My parents always tried to convince me to play with other children who are disabled, but I found this weird. I thought that just because we share a disability, we don’t necessarily have to have the same hobbies,” Raúl says. But when he was the only person with a disability in his class at college, he changed his view. “All of a sudden, I missed contact with my peer group,” Raúl explains. He decided to write his thesis on disability representation in German TV and, while researching for it,  was struck by emotions he had been suppressing for more than 27 years: Feelings from being the minority who had to adapt to a non-disabled and inaccessible society. “Then I thought, ‘let’s do something about it.’ All the organizations for people with disabilities in Germany seemed so old-fashioned back then. They often focused on generating a feeling of pity for disabled people, and I never felt represented by them. So I started a new organization to reach people like me,” Raul says. 

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The ‘Sozialhelden’ were born. 

Raul founded the ‘Sozialhelden,’ which translates to ‘Social Heros,’ with his cousin Jan in 2004. Since then, they have become one of the most influential disability organizations in Germany. The organization’s mission is ‘Disability Mainstreaming.’ ”We try to find out what concepts work well in mainstream and then adapt these to the topic of disability,” Svenja Heinecke, community manager of project ‘Wheelmap,’ one of many projects the ‘Sozialhelden’ initiated, explains. When Svenja talks about disability mainstreaming, she refers to disability information being present without an explicit focus on it. For example, her organization worked with a German phone book provider ‘Gelbe Seiten’ to offer accessibility information about places that were already in their book. Additionally, they worked with the online rental marketplace ‘ImmobilienScout’ who has included information about any wheelchair-accessible locations close to their properties on their map. 

The ‘Sozialhelden’ are currently operating over 16 projects and initiatives focusing on two main areas: accessibility for and representation of people with disabilities, specifically educating the non-disabled majority about common misconceptions surrounding people with disabilities. 

Svenja, a woman with curly, shoulder-length, light brown hair sits on a table outdoors in front of a coffee shop and holds a cup of coffee. She talks with Raúl, who is wearing his feature grey hat.
Svenja and Raúl meet up to discuss current and future ‘Sozialhelden’ projects
(Image by Andi Weiland, https://gesellschaftsbilder.de))

“I could never live your life.”

As a wheelchair-user, Raúl is familiar with stereotypes our society has of people with disabilities. “Sometimes, it’s admiration for living my life ‘despite being disabled,’ other times, it’s pity,” Raúl explains. He smiles when he talks about his partner, who also lives with a disability, and the reactions they receive from people passing them on their strolls through the city together. “They have this angelic smile on their faces as if they wanted to say, ‘These two have found each other,’” Raúl adds. Depending on the situation, he conquers these comments with humor. “I allow children almost anything besides violence. They are curious, and it’s OK to ask questions if they see particular things for the first time,” Raúl says. He is much more interested in observing how the parents react to their children if they do ask a question. Do they scold their child for their curiosity, creating a fear of disabilities? When it comes to adults, Raúl is a bit stricter. “Is a comment that’s solely based on my physical appearance really appropriate? I mean, I don’t just say ‘Hey, you have a nice butt,’ to someone I have never met before. It’s strange that we wouldn’t do this, but when we talk about disability, it seems like every question is OK to be asked.” Raúl doesn’t say people aren’t allowed to ask about his disability, but they should at least be willing to get to know him first before investigating such a private part of his life. 

Humor does help.

Raúl was once invited to speak at an event but was not provided with a wheelchair ramp to the podium. As one of the most influential voices in German disability circles, everyone inviting Raúl to an event knows he is a wheelchair-user. In the beginning, he would apologize for not informing them beforehand and tell them they could simply carry him up the stage, but he doesn’t accept this lack of accessibility anymore. Now, he uses those situations to educate people about accessibility. “I do thematize this topic publicly in front of the audience. This usually teaches the host to avoid the same mistake in the future – meaning:  they either learn not to invite me again or that they need a ramp when they invite a wheelchair-user,” Raúl says and laughs. 

Wheelmap.

To counteract the inaccessibility of many buildings in Germany, the ‘Sozialhelden’ invented ‘Wheelmap,’ an initiative to prepare data about the accessibility of places all over the world in a way that is useable for other platforms, whether it be Google or Apple. Since its launch in 2010, more than one million locations have been ranked, with Germany at the forefront, followed by the US, India, and France. “Someone even ranked a postal office on the North Pole,” Svenja says and chuckles. Anyone who downloads the application, which is available in 32 languages, can easily rank a place as ‘green,’ which means fully accessible, ‘yellow’: partially accessible, and ‘red:’ not accessible. “We started Wheelmap in Germany because we have a large gap in our legislation. In Germany, many privately owned places, such as restaurants or coffee shops, aren’t accessible, and they don’t have to be by law. So Wheelmap is supposed to bridge that gap and help people to find accessible locations,” Svenja explains. “We would prefer if Wheelmap didn’t have to exist. But right now, that’s not an option. And since we don’t know when we will get to the point of accessibility for all, we started to think bigger,” Svenja adds. 

In order to offer this data to others so that anyone can find accessibility information on a variety of platforms, they invented ’Accessibility Cloud:’ a cloud that allows data on accessibility to be easily transferred to international organizations with the same goal. Additionally, the ‘Wheelmap Universe,’ how Svenja calls it, works on several other projects, all with a focus on accessibility. For example, ‘Broken Lifts,’ a service providing information about malfunctioning elevators in Berlin, or ‘Wheelramp,’ a mobile ramp to quickly overcome a few stairs in front of old buildings in Germany. 

Raúl, a man with short brown hair, black glasses and a brown hat who is in a wheelchair, talks to another woman with light brown long hair who is in a wheelchair too. They are surrounded by another man and woman who look excitedly at them.
Raúl and Svenja during the ‘mapping’ process (Image by Andi Weiland)

What did the ‘Sozialhelden’ achieve?

Raul believes it’s hard to directly attribute any changes in accessibility to their projects. “We continue to feel how much of a problem the permanent inaccessibility of privately owned buildings is,” Raul says. “This is something we won’t change with awareness, great software, or other initiatives. It’s something we will only achieve by having clear laws and the legal obligation for private owners to make their businesses accessible,” he adds. Presently in Germany, there aren’t any consequences for restaurants and business owners if their facilities aren’t wheelchair-accessible. “And it is not only about places. It’s also about private broadcasters, who aren’t required by law to caption their content or companies who can still pay their way out of the responsibility to hire people with disabilities.”

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Raúl sees the ‘Americans with Disability Act’ as a role model and thinks that Germany should follow suit. According to Raúl, Germany doesn’t score high in terms of accessibility compared to many other European countries. “In Germany, we often use outdated arguments, like non-disabled children would be held up by disabled children at school. And all these arguments from the 80s aren’t even proven. The problem isn’t what a disabled child can or cannot do; it’s about a school director who simply doesn’t want to see change.”

The 39-year-old laughs when he says that if he were the ‘Queen of Germany,’ he would put a law like the ADA into place and obligate all private sectors to become accessible. “I don’t believe in the mantra that this has to happen voluntarily. We haven’t achieved gender equality by kindly asking. This can only work if laws force companies to comply.”

Raúl Krauthausen has a clear idea of what ‘inclusion’ means to him.

When I ask Raúl a rather amusing and random question, I did not expect his powerful response. I wanted to know what his hat is all about. Nobody ever sees him without it. He laughs and, with his Berlin directness, answers that he just doesn’t have much hair, and after he would wear base caps all the way into his adulthood, his cousin, a designer, surprised him with a real hat, which Raúl has worn ever since. However, that’s not the main reason he made this hat his trademark. It’s much more serious. “If I can get to the point where people only see me as ‘the man with the hat’ and not ‘the man in the wheelchair,’ then we have really achieved inclusion.”

Raul Krauthausen: https://raul.de

Sozialhelden: https://sozialhelden.de

Wheelmap: https://wheelmap.org

(Even during times of COVID-19, you can be part of the Wheelmap community by becoming a translator. More information: https://news.wheelmap.org/en/wheelmap-ambassador/)

by Karina Ulrike Sturm (I have had the pleasure of contributing to Raúl’s blog)

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