Inclusion activists: Self-determined, personal, diverse

03/01/2018

Photo: Two women in a wheelchair during a demonstration. One woman holds a sign saying: Participation does not need skills; Copyright: Andi Weiland | Gesellschaftsbilder. de

"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.

What are the characteristics of an activist?

Leading by example

Photo: Laura Gehlhaar; Copyright: Schall&Schnabel
Laura Gehlhaar:
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.
More about Laura Gehlhaar (in German) at: www.lauragehlhaar.com
Photo: Michel Arriens; Copyright: Anna Spindelndreier
Michel Arriens:
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.
More about Michel Arriens (in German) at: www.michelarriens.de
Photo: Aleksander Knauerhase; Copyright: Sascha Erni
Aleksander Knauerhase:
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.
More about Aleksander Knauerhase (in German) at: www.quergedachtes.wordpress.com
Photo: Constantin Grosch speaks into a microphone during a protest action; Copyright: Jörg Farys | Gesellschaftsbilder.de
Constantin Grosch:
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.
More about Constantin Grosch (in German) at: www.grosch.co
Photo: Ralph Raule; Copyright: Gabriel Soares
Ralph Raule:
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.
More about Ralph Raule at: www.twitter.com/weltenpendlr
Photo: Matthias Vernaldi; Copyright: private
Matthias Vernaldi:
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".
Get in contact with Matthias Vernaldi (in German) at: facebook.com/matthias.vernaldi
Photo: Rebecca Maskos at a protest event; Copyright: Andi Weiland | Gesellschaftsbilder.de
Rebecca Maskos:
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.
More about Rebecca Maskos (in German) at: www.rebecca-maskos.net

Activists then and now

Photo: Raul Krauthausen and other demonstrators talk to a policeman during the Chaining up campaign in front of the Bundestag in 2016; Copyright: Andi Weiland | Gesellschaftsbilder.de

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.

Photo: Nadine Lormis; Copyright: private

© private

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