Nothing About Us Without Us?

Nothing About Us Without Us‘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.

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What’s Meaningful Participation?

Meaningful Participation by Alice WelbournWhat’s Meaningful Participation? A key question that requires many people to answer.

A diverse and dynamic group of activists, academics and public health officials are now collaborating on a new  project — All Aboard! This initiative, spearheaded by the IMAXI Cooperative, combines scientific research with the practical development of a new participatory tool that aims to make “Nothing about us without us” a reality in global health governance. We believe that by advancing the meaningful participation and accountable representation of the most affected communities within decision-making institutions, fewer people living with life-threatening and life-changing diseases / disabilities will be ‘left behind’ and left out of programmes to improve health and well-being.

Before tools to claim ‘seats at the tables’ of the policy-makers can be forged, we seek a broad-based consensus on what meaningful participation actually means. Below are a few elements – we like to know what else can be added to the mix.

• Meaningful participation is based on the principle that those who are affected by a decision have a right to be involved in the decision-making process.

• Meaningful participation includes the promise that the public’s contribution will influence the decision.

• Meaningful participation promotes sustainable decisions by recognising and communicating the needs and interests of all participants.

• Meaningful participation contributes broad, long-term stake-holding to policy development when supported in a sustainable manner.

• Meaningful participation seeks out and facilitates the involvement of those potentially affected by or interested in a decision.

• Meaningful participation seeks input from participants in designing how they participate.

• Meaningful participation provides participants with the information they need to participate in a meaningful way.

• Meaningful participation communicates to participants how their input affected the decision.

• Meaningful participation helps to assure that ‘no one will be left behind’ in the sustainable development agenda.

• Meaningful participation enables people to realise their rights to participate in, and access information relating to, the decision-making processes which affect their lives.

Please send us any further ideas or suggestions. Everyone’s welcome to “Write Your Rights” to a seat at the table.
Contact us.

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