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.

"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."

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."

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.

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".

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."

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.