End Ivory-Toweritis

Ivory-Toweritis“Ivory-Toweritis is a curable mental illness, but we urgently need to develop a rapid diagnostic test to end the suffering it causes.” – Dr. Fora Rites
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Is it disrespect or disinterest? Too high-up to exchange with folks from the ‘bottom’?  Too well-paid and too professional to collaborate with unpaid activists and their community based organisations?

Why is there such an enormous barrier between those who make global health policies and those who must live, or die, by their decisions?  Why is there such a gap between their stated goals on “inclusive engagement” and the de-facto exclusion of affected communities from the decision-making processes?

Over the years, we have tried to connect with many public health professionals that make decisions that impact on our health and that of our communities. The aim is always to begin a dialogue on how to turn their noble words, like ‘leaving no one behind’, into realities on the ground through collaboration and cooperation.

Sometimes, we have had responses to our e-mails and start an exchange which is of mutual interest. We’ve established some ongoing relationships and a few direct collaborations, which has shown that working together as real partners is possible even within the top-down world of public health governance.

However, too often we have not had any replies to our correspondence. Too often attempts to establish contact are like a long one-way street that goes nowhere — a dead end. Gentle reminders have proved to be a waste of gentleness. We are not alone in being disempowered and disheartened — many other community activists and NGOs are becoming jaded by public health experts that say “we need to hear the ‘voices’ of the community” yet make it impossible to actually do so in real terms. The hypocrisy of those at the ‘top’ is eating away at the good will of engaged folks at the ‘bottom’, which discourages the local public participation that should be central to efforts to improve health and well-being on the ground.

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All Aboard

All Aboard!What’s ‘All Aboard’? 

Founded and driven by poor people living with life-threatening diseases and disabilities from around the world with a shared experience of having to struggle for their right to health, the IMAXI Cooperative is a small international NGO established in 2010. We’ve come together, in common cause, to help our peers to empower themselves and their communities so that others might not also be denied their rights.

Drawing on decades of our collective experience as community and global health activists, we design and develop collaborative tools and projects, while advocating for the greater participation of those most affected in the policy-making process and implementation of programmes. Our members have seen first-hand how a ‘seat at the table’ of decision-makers can bring substantial improvements to the health and well being of their communities. We have also seen the deaths and suffering that comes with not having any voice in how public health services are designed and implemented.

As a ’volunteer-only’ non-profit organisation, working from our kitchen tables or cyber-cafes and funded only by our own donations, we have focused on forging tools that do not require substantial funding to utilise. With a network of other un-paid yet very engaged activists in diverse communities that help out with different initiatives, we have been able to advance an independent ‘human rights-based approach’ to health and development even with our very limited finances. However, we are now beginning an important global health governance initiative that will require more resources than we have ourselves. In ‘UN-Sloganese’, we aim to dynamically fuse the top-down “Leave No One Behind” with the bottom-up “Nothing About Us Without Us”,  wherever policies that impact the health and well being of marginalised communities are made.

‘All Aboard’ is a two step research and development project that will first assess the state of community participation in decision-making bodies within key institutions in global health, including the United Nations agencies (WHO, UNAIDS, UNDP, UNICEF, UN Women) and two major foundations, the Global Fund and Gates, and secondly, to apply this knowledge to the programmatic advance of meaningful participation and accountable representation. First the scientific research, then the evidence-based development.

We have gathered together a brilliant group of almost twenty activists, academics and public health officials and have begun to conduct a methodological, scientifically robust study. The findings of this collaborative research will be published in the autumn of 2017 in Global Health Governance, the “Scholarly Journal for the New Health Security Paradigm”. The Abstract, which has been accepted, can be seen here.

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