Inclusion activists: Self-determined, personal, diverse
Inclusion activists: Self-determined, personal, diverse
Their names are Rebecca, Constantin, Laura, Michel or Aleksander. They use their common sense and their reach in (social) media to raise awareness – of what it is like to live in a society when you use a wheelchair, are of short stature or have autism. And of what it is like to continuously encounter barriers and being restricted.
"Participation does not need skills" - with these and numerous other signs and messages, people with disabilities protested for example at the European Protest Day on Equality of Persons with Disabilities in Berlin in 2016.
"The word activist contains the word 'active'. That’s exactly what this is all about: becoming active and involved, expressing demands and enforcing them effectively but creatively," says Constantin Grosch, who considers it his mission to "embark on creative protest and to continuously insert it into politics and society by using constructive feedback."
What are the characteristics of an activist?
It is difficult to define the term "activist". A self-designation doesn’t fully encompass the concept. Generally, the aforementioned notion of being active is crucial, especially when it comes to activism for inclusion and accessibility. For many people with disabilities, their discontent with certain deficits in our society becomes the driving force that sparks and fuels their activism. They share their personal stories with the public.
"As an activist, I am a mouthpiece for a constantly changing group of people with and without disabilities to point out grievances and start a conversation that results in solutions for an accessible and inclusive future," says Michel Arriens. To do this, he wants for all parties to get together and communicate. Like Arriens, many activists stand up for their common goal in various ways both in their professional and personal lives.
Especially in the context of disability, it is essential not to talk about the affected groups but rather to talk with them. They need to be actively involved in the process – quite in the spirit of the UN Convention on the Rights of Persons with Disabilities mantra "Nothing About Us Without Us". This is also something Aleksander Knauerhase can attest to, who – as a person affected by autism - mainly champions autism causes. His commitment to fight against harmful therapies and countless false promises of an "autism cure" often has consequences. "An activist is inconvenient and puts the finger where it hurts. A great activist can dish it out, stays tenacious and –above all- has to live with the fact that he or she might face adversity at times. You have to be able to live with being unpopular and maybe even hated."
Leading by example
There will always be criticism, envy, and dissent – especially when activists are very much in the public eye and dare to address touchy subjects. Ralph Raule, Chairman of the Hamburg Deaf Association (Gehörlosenverband Hamburg e.V.) agrees and states that activists ask inconvenient questions and don’t just talk. "They are courageous and dare to do things without caring about conventions and actually even break them now and then." In a way, this also makes them trailblazers and role models.
I would like to talk about subjects that are not well received by the general public. The diversity of this society should be seen and heard consistently and in its strength. I want to make different realities of life visible. This also includes raising awareness of discrimination. Issues such as disability and feminism are particularly close to my heart. Especially on my blog I write about it. But I can't hold back on Twitter either. Being an activist means standing up for a topic and bringing it forward with political background knowledge, personality and fighting spirit. However, you should not lose sight of the bigger picture. After all, each topic is ultimately reflected in a vast web of other discourses and it is important to be in constant exchange.
For me, activists are people who not only engage themselves for their own benefit, but also strive to improve the quality of life of other people with petitions, artistic projects, a blog, social media videos or other activities. For me personally, the continuous exchange with different people, their perspectives and backgrounds is very important. We need to talk more. Get out of the "that's it", into the "that could be better for everyone" feeling. I want to expand horizons. A new way of thinking about living together. Finding solutions that make being human, with or without disability, more worthwhile. I do this with workshops, lectures, discussions and my social media channels. Since April 2017 I have been working as a campaigner and social media manager for change.org – the world's largest online campaign platform – and since then I have been passing on my knowledge to other people. This year I will also address the completely incomprehensible deplorable state of affairs that private companies in Germany such as cafés, restaurants, bars, but also cinemas and shopping centres are not obliged to provide accessibility. My everyday life as a person with disabilities does not consist of dealing with the authorities (which must be accessible) but of life out there. I want to go out with friends without having to think about where I can go because of possible barriers. Just like any non-disabled person.
Activism stands for movement and change. An activist defends the rights of others. In the best case, he is "affected" himself when it comes to disability and illness. Too much is still being said about us without involving us. I work mainly in two large areas: On the one hand, in active support for the human rights of people with disabilities. I am committed to finally combating harmful therapies for autistic people. We activists had a great success at the end of 2016, where we have achieved a long and constant protest that Aktion Mensch no longer promotes therapies which massively interfere with the human rights of autistic children. But, especially in the area of autism, there is a lot of work to be done against "promise of salvation", harmful therapies such as ABA (Applied Behavior Analysis) and sometimes very harmful substances such as MMS "chlorine bleach", which are supposed to cure autism. Here it is important to prevent concrete damage to body and soul in the future. On the other hand, I work a lot in the enlightenment. Especially invisible disabilities such as autism are not tangible for many people. This is where you have to start with information, discussions and seminars in order to make a difference for both the experts and their relatives. Since last year, I have been working with relatives whose children have recently been diagnosed with autism. Here, worlds collapse and it is important to point out perspectives and to look realistically at the desire for healing with information in order to offer charlatans as little ground as possible.
As an activist, you should put topics, problems, but also solutions that have to do with your own involvement into the public limelight. An activist is a hybrid of protestant, self-involved and political representatives. Especially for us people with disabilities it is important to pay attention to who or what we represent. On the one hand, I cannot talk legitimately and seriously about subjects on which I have no experience of discrimination of my own. On the other hand, there are many sub-groups and cultures in the disabled people's movement that deserve and need solidarity-based protests and spotlighting. It takes a sure instinct. It is my task to show creative protest and to bring it into politics and society with constructive hints. The aim is to educate the ignorant, to shake up those who know and to force decision-makers to act. At the moment, I am particularly concerned about three areas: In Berlin, in particular, I personally work in the Joint Federal Committee on improving the care situation of people with disabilities during a hospital stay. So there my activism is regulated in a very clear, state process. The second topic, also with the new German coalition agreement, is the old dispute about accessibility in the private sector. Here we will have to consider actions and protests in order to prevent the issue from degenerating into a mere government audit mandate. I also see it as a permanent task to overcome institutionalised disability assistance.
Activists have a certain visionary and also strategically sustainable view, are good team players and can motivate other people to participate actively. They point out to society again and again the grievances of disabled people and sensitize them to other points of view. It is particularly important that you win a lot of comrades-in-arms and don't put everything on one shoulder. My focus is on the access to information in sign language, because it is the mother tongue of deaf people and there is currently far too little information about it and also in it. I see sign language as a human right and the UN Convention on the Rights of Persons with Disabilities affirms this. As long as little information is available in sign language, the deaf will have difficulties in our society to gain a foothold and participate in it. Here I am very active as chairman of the Hamburg Deaf Association as well as an entrepreneur at Gebärdenwerk and now also at yomma. In both areas we develop solutions for overcoming barriers and the social participation of deaf people. In addition, I am also chairman of the Landesarbeitsgemeinschaft behinderter Menschen in Hamburg, which is regarded as an umbrella organisation and is committed to the interests of all disabled people in Hamburg. The focus here is also very much on accessibility and social participation. We are currently setting up a new Accessibility Competence Centre in Hamburg to support, for example, public authorities on their way to greater accessibility.
Unfortunately, I am not able to build up a good relationship with the concept of the term "activist" and feel rather a considerable distance. I did not choose this work, but it was created out of existential pressure. I am dependent on assistance, always needing the help of other people around the clock. Without it, I'd be dead long ago. Personal assistance for people with disabilities has been developed by ourselves. Three decades after its beginnings, it is still endangered because social policy wants to adapt everything to its guidelines and nominations. And they see those in need of help mainly as cost factors. What is more, it is clear – some people are helping here, the strong ones. The others are passive recipients who have no claims. Social rights, human rights, civil rights – that is all secondary. I've been entitled to personal assistance for a quarter of a century. Any change to the law in the field of care, participation, disability assistance and social welfare jeopardises the laboriously drafted status quo. We cannot achieve participation without assistance. There is no alternative but to get directly involved in politics. I've been doing that since the mid-1990s. One topic that also occupies me from my own existential concern is sexuality and disability. This is less boring, because it is much more about public relations and thematic orientation, communication, art and provocation. I advise disabled people, their partners, relatives and employees and give lectures and seminars. Together with others, I am currently preparing a conference: "The democratization of lust".
If being an activist means organizing demos and actions, then I'm probably only half an activist. I have already organized demos and parades, but more often I find myself as a supporter, lyricist and mouthpiece. But probably activism means more than demos: As an activist I bring in new themes and ideas, network others and write. At the moment, together with other experts, I am trying to make Disability Studies better known in Germany. A research approach that has developed the social model of disability and is supported by the input of the activists. My experiences from the American Disability Studies and the US disability movement, which I was able to get to know "live" during a year of study, also help me with this – many of their ideas can be found in my work. One of my main topics is the concept of Ableism, which is not yet well known in Germany. It could be translated as disability hostility, but it means something more: Ableism sheds light on the pressure on all of us to be autonomous and efficient. From this point of view, I also like to deal with the ideas of inclusion, criticize its neoliberal excesses, and keep an eye on bioethics debates: decisions at the beginning and end of life under economic circumstances. In addition, I have long been accompanied by the presentation of disabled people in the media, violence against women and girls with disabilities and criticism of institutions for helping the disabled.
Raul Krauthausen is such a role model for many people with disabilities in Germany. As an inclusion activist and expert who is personally affected by disability, he is a sought-after interview partner. His presence in multiple media formats sometimes also attracts jealousy and criticism. Krauthausen definitely tries to take this seriously, as he reveals in a conversation with REHACARE.com.
But since he is often asked about contacts for specific topics, he has published a list with links to inspiring people with disabilities and their online projects on his website. The list also includes many well-known German inclusion activists. What makes them activists? The answer lies in the response to the following questions: "Do you only do something for the money? Or do you get involved because you believe that change is necessary? If it is the latter, you are probably more of an activist than a business person," says Krauthausen.
Laura Gehlhaar is also on this list because she addresses subjects that don’t garner enough public attention. "The diversity of our society and its strength should be constantly seen and heard," she says. That’s why she is an active blogger and also "can’t hold back on Twitter".
Activists then and now
Social networking sites like Twitter, Facebook, and YouTube are among the most important channels for many activists to raise awareness of their concerns. If you browse YouTube, for example, you can find an increasing number of vloggers with disabilities. Whether it is book reviews, lifestyle tips, or social criticism – the channels of these YouTubers with disabilities are as unique as their owners. And no matter what their message is, this is a platform where they are seen and heard by many people.Some of them have talked to REHACARE.com. Vlogger Kübra Sekin not only asks herself whether she should call herself an activist, she also points out that "being an activist means taking a lot of responsibility. I only take responsibility for my work but that is often much harder than you would think! Maybe I am an intermediary."
Protest actions have a long tradition in the disability rights movement. The photo shows a situation during the Chaining up Campaign in front of the Bundestag for a good participation law that took place in 2016.
Rebecca Maskos, a research associate at the University of Bremen who is currently earning her doctorate in Disability Studies, also sees herself as such. "If the disability rights movement had two stages – the previous one where people blocked streetcars and organized hunger strikes and the current one where people network through social media and campaigns – I guess I am part of the sandwich generation," says the 43-year-old. "I am still quite young in the eyes of the 'old hands' yet I am a grandma from the perspective of the 'spring chickens'. Maybe I am kind of an intermediary between these age brackets and I like to bring people together." She adds that "unfortunately", she has "never blocked any streetcars" but tends to comment and write about things or co-develop projects.
Quite unlike Matthias Vernaldi, who co-founded the Alliance of People with Disabilities for Self-Determination (Bündnis für selbstbestimmtes Leben behinderter Menschen) in Berlin in the 90s, where he is still an active member today. "Back then, we used to occupy government agencies, disrupted events and kept forcing politicians to face up to both the subject matter and us as the affected parties." Having said that, Vernaldi struggles with the term activist. He feels that being active seems to be more important than concrete contents and objectives. "Somehow the activist takes center stage, while the issue takes a back seat." Incidentally, Vernaldi‘s work today centers more around participating in various advisory boards and working committees. "That’s a far cry from a demonstration or a flash mob – for the most part, it’s exhausting and actually quite boring."
Protests and demonstrations for the rights of people with disabilities are nothing new. They have been an integral part of the global disability rights movement from the start. Yet only for the past ten years have people with different disabilities gathered to join in so-called Disability Pride Parades – whether it’s in Zurich, Berlin, Toronto or New York. They proudly stand up, represent the diversity of our society and aim to make a colorful and bold social and political statement.
Needless to say, not everyone is able to identify with this form of activism and not everyone wants to be present in (social) media – or is in general not willing to get involved or be called an activist. Regardless of whether it is offline or online, there are many activism opportunities at this point if needed. And with all of these forms, the secret of success might ultimately be togetherness – the act of communicating, acting and living together.