Every Voice counts – even without Words: Self-determination despite significant Support Needs

Until recently, more than 85,000 adults with disabilities were unable to vote in Germany. Only in 2019 did the German parliament decide to introduce a more inclusive voting law that grants disabled individuals an equitable legal voice. The question of how inclusion, participation, and self-determination can be made possible, even for individuals with significant support needs, is currently being examined in the context of a research study being carried out by the Institut Mensch Ethik Wissenschaft (IMEW) in Berlin. The focus of the analysis is the concrete changes and challenges that resulted from the law that granted suffrage to the disabled. A key aspect of the project, planned for two years, is praxis-oriented workshops held by selected institutions for disability integration. Here, affected individuals, caregivers and companions, and relatives can discuss their individual experiences and needs. Practical examples are also presented that demonstrate how existing hurdles in daily life can be managed.

The goal of the workshop and the study: to engage with one another as equals and to work together to develop ideas that enable a self-determined life. Concrete solution suggestions for securing the long-term participation and engagement of the disabled will be derived from practical experience. A Stuttgart organization for the disabled, Gemeinnützige Werkstätten und Wohnstätten GmbH (GWW), is already making pioneering contributions in this respect. At their more than 20 locations in the nearby areas of Calw and Böblingen are around 1,300 individuals who are cared for. GWW, as one of the institutions selected by the IMEW, invited interested parties to a joint workshop in Herrenberg in January 2020, where they discussed their groundbreaking approach.

Among the participants at the workshop, who came from the entire region, were seven men and women with high support needs. Most of them are not able to speak in the usual meaning of the term, but thanks to modern technology are able to communicate and clearly share their opinions. “We don’t want to be treated like babies,” said Sevinc Kurban. The 29-year-old sits, like many of the other attendees, in a wheelchair; she communicates using a so-called “talker,” a technical communication device for augmentative and alternative communication, or AAC. Well, she usually communicates with her talker – during the workshop, an empty battery left her temporarily voiceless. That’s when Angelika Schwager from the Lebenshilfe Hannover sprang into action. She has been a companion to Sevinc Kurban since she was a student and seems to understand her wonderfully, even non-verbally. The two women have a very close relationship and travelled together to the workshop in Herrenberg using public transportation. They travelled over 500 km on that day – but not without encountering challenges: barrier-free and disability-friendly is unfortunately not yet a reality in all train stations and on all forms of public transportation. This causes frustration and requires considerable patience as well as creative solutions.

The remaining workshop participants with high assistance needs have had similar experiences. Relatives and assistants are all too familiar with these situations, as well. That is why they all agree: “There is a great need to improve the situation in terms of barrier-free access and mobility for individuals with handicaps.” But that is only one of many concerns for individuals with high assistance needs, who are surely experts in their own field and who want, here and generally, to have their own voices when it comes social participation and inclusion. In an institutional context, the GWW is already assuming a pioneering role and making a clear case for improving the living situations of this group of people. Within the organization, for example, education and inclusion are already available for all. Individuals with high support needs are also able to exercise their right to self-determination – something that is possible since the founding of an independent advisory board on support and caregiving matters. The board consists of ten democratically selected members and joins an existing advisory board for the workshop and residency.

One of the members of this board is Bernd Oberdorfer, who is participating in the workshop with his assistant, Brenda Rattay-Schülke. The two are a well-rehearsed team and joke with one another frequently. When the 58-year-old isn’t giving talks to interested school classes, companies, or confirmation classes – part of the project “Speechless? Not a problem for us!” – then he is accompanied five days a week at the funding and support area in Sindelfingen. Although he doesn’t really care for modern technology, he must admit that it is a great help in daily life. By moving his head, he is able to operate a speaking device on his wheelchair that operates with a sensor and motor – a device he first uses to request a latte from his assistant. That taken care of, he welcomes the audience to his audio presentation, which he prefers his assistant does not interfere with. “He has his own opinions and knows how to enforce them,” says Brenda Rattay-Schülke. Her strong-willed client has taught her that individuals with assistance needs can often do much more than others expect. That’s why it’s so important to intentionally hold back in everyday life. “That is an important criterion for enabling a self-determined life with disabilities,” the care assistant emphasizes. “Since Mr. Oberdorfer has been on the advisory board, for example, he has really blossomed.” The position creates self-confidence and encourages people that they can independently make a difference.

Markus Weimar, a fellow member of the support and caregiving advisory board and also a participant at the workshop, can confirm these insights. His friend Arno, who is considered the IT specialist in the group and who takes care of all kinds of written documents, encouraged him to put himself forward as a candidate for the board. After a serious accident 14 years ago, the trained chef spent a year in a coma. When he woke up, nothing was the same. “Since then, time has played a completely different role for me. Everything simply takes longer,” said the humorous young man, whose jokes repeatedly bring the workshop attendees to laughter. “But I have always had a lot of patience,” Markus Weimar continues, and he emphasizes the need to live in the “here and today.” After the loss of his eyesight, he developed a very acute sense of hearing and learned to orient his senses differently. That is why the young man, who uses a wheelchair, particularly enjoys woodworking and the tactile experience of working with natural materials. The experience of being able to create things himself, despite limitations, is central for him. His positive approach to life and his conviction to participate in important decisions motivate his meaningful and varied work on the advisory board. After all, this type of inclusive advisory board is by no means standard for the field of disability caregiving and assistance. “It is all a question of the institute’s attitude and the way It lives out its understanding of worth,” GWW general manager Andrea Stratmann explained to the group. As she knows, unified, compulsory regulations on the federal level are a long way away. Still, organizations will find it worthwhile to tread new paths and share new ideas with other institutions. This is one of the intentions of the workshop in Herrenberg. “Thinking in alternatives is unavoidable to bring about change,” says Andrea Stratmann, “as are critical reflection and intentionally breaking away from deadlocked, outdated patterns and prejudices.”

The study being carried out by the IMEW in Berlin is examining what is currently possible under the existing organizational and legal framework of German disability law – and how processes of change and improvement can be initiated. The study will appear in autumn 2020.