Living a self-determined life: Nothing about us without us

Self-determination is a human right. Yet despite the ratification of the UN Convention on the Rights of Persons with Disabilities (UN-CRPD) by many countries worldwide, this right cannot be acknowledged in an unrestricted manner: persons with various disabilities are still restricted by the structures surrounding them. They are constrained by society. This prevents them from living a self-determined life.


Graphic: World map labeled with "human rights"; ©

Self-determination is a human right worldwide; ©

"In many cases, persons with disabilities are no longer willing to settle for being objects of welfare with a lack of services," knows project coordinator and vice president of the special interest group Living a Self-Determined Life (German: Selbstbestimmt Leben), ISL, Germany, Barbara Vieweg.

Problems despite the UN Convention

"Living a self-determined life means having control over your own life. This predominantly means being able to make your own decisions about all matters of your life and pertaining to all areas. Self-determination includes the choice between acceptable alternatives and the freedom from being ruled by someone else. Self-determination is a flexible individual concept that each individual needs to determine him-or-herself."

This is a summary of the definition by DeLoach C.P., R.D. Wilins, G.W. Walker: Independent Living – Philosophy, Process and Services. Baltimore, 1983, pg. 64.

The ISL Germany has made this quote the prefix of its mission statement. Vieweg believes that the disability rights movement has gained in importance over the past 20 years in Germany and has also been successful as a result. Thanks to the UN-CRPD in particular, a humanitarian understanding of disability is starting to take hold. "Nevertheless, there are central issues for which there is no solution in sight," says Vieweg.

According to Vieweg, one of these problems is the offsetting of income and assets for people who depend on benefits from integration support services and care support by the social security administration. "Due to their disability and assistance needs, they need to spend up to 40 percent of their income for services they urgently need. This also applies to their family members who live in the same household," explains Vieweg. "This discrimination was also emphasized in the closing remarks by the Committee on the Rights of Persons with Disabilities on Germany’s first state report."

In it, it states among other things:
"Furthermore, it [the Committee] is concerned that the right to an adequate standard of living in society is infringed upon in that access to benefits and support services is subject to a means test and - as a result - not all disability-related expenses are being covered."

The German Federal Ministry for Labor and Social Affairs is currently working on a bill for the participation of disabled persons ("Bundesteilhabegesetz"). "However, disability organizations worry that this is not going to result in substantial improvements and that the existing clause on additional costs ("Mehrkostenvorbehalt") for outpatient care services will continue to remain in the Social Code-Book XII," adds Vieweg.
Photo: Barbara Vieweg; © W. Schär

Barbara Vieweg; © W. Schär

She sees another problem in the still disproportionally high unemployment rate of disabled persons. For many, access to the general job market and thus their own income remains barred. "Far too many people are employed in sheltered workshops for the disabled without even a small percentage of them being able to make the transition to the general job market," criticizes Vieweg. This is where concrete guidelines by the rehabilitation providers and agencies are needed, combined with incentives and sanction options. Also important is an improved mobility between the workshop – as an occupational rehabilitation facility – and the general job market.

Self-determination is not a matter of course

So persons with disabilities can learn to represent their own interests, ISL Germany offers so-called empowerment seminars, in which – among other things – confidence in your own abilities is being taught. In addition, Vieweg points out the importance of self-representation organizations of disabled persons. They are important so the demands for a self-determined life can become a part of the political debate. "Without these important organizations, only individual voices are being heard that the powerful people in politics either consider or not as needed," says Vieweg.

This is why it should be the stated goal of our society to enable persons with disabilities and their organizations to exert significantly more influence on their own interests. According to Vieweg, it is essential to focus on the aforementioned definition of a self-determined life. After all, "It is a lot easier to simply put the term self-determination on traditional disability services versus actually implementing the contents."

Incidentally, the fact that it is definitely possible to increasingly include persons with disabilities and their needs and to be more aware can be seen in the UN Sustainable Development Goals. The world population of currently 7.2 billion includes at least one billion persons with disabilities. "Finally, many of the 15 primary objectives and 160 subgoals also include persons with disabilities who have so far been strongly neglected," praises Vieweg.

Hopefully, there are more examples to come and a self-determined life for persons with disabilities finally becomes a matter of course.
Photo: Nadine Lormis; Copyright: B. Frommann

© B. Frommann

Nadine Lormis
(Translated by Elena O'Meara.)