‘Nothing About Us Without Us’ is a slogan used to express the principle that no policy should be decided without the full and direct participation of members of the group(s) affected by that policy. This principle is called ‘meaningful participation’, a key pillar of the UN’s Human Rights-Based Approach.
Both the principle and the slogan have grown out of social movements demanding change, beginning with the 18th and 19th century revolutions in Europe and America, as in “No taxation without representation!”. In Europe during the early 1900’s, a number of popular campaigns arose to try to transform monarchies to democracies, using a similar slogan to advocate for the principle of participation. Some twenty-five years ago, people with disabilities began using ‘Nothing About Us Without Us’ to campaign for participation in the development of a pioneering UN treaty, Convention on the Rights of People with Disabilities (CRPD), and then by people living with HIV (PLHIV) demanding a say in AIDS programmes.
In recent years, other affected groups and health activists have also embraced the slogan in their quest for a ‘seat at the table’, where policy decisions are made. However, it seems that this has not led to increased participation — our informal studies indicate that very few global health institutions have respected this principle nor our rights. Since we established the IMAXI Cooperative in 2010, we have focused much of our energies on advocating for the greater participation and representation of our peers from our communities, people living with life-threatening or life-changing diseases or disabilities who are reliant on local public health services. From our experience, it seems that while those at the top promise to ”leave no one behind”, those on the bottom are still being left out and excluded from where it really counts — where health policies are decided.
It’s high time to turn Nothing About Us Without Us into a reality by establishing a new governance ‘norm’ in every global health institution. To do so, we must begin with an evidence-based approach to claiming our right to participate. The IMAXI Cooperative, with a dozen friends and allies, have started ‘All Aboard’, a unique research and development project on the participation of the people most impacted by health policies and their community-based organisations in the decision making processes in global health governance.