London School of Hygiene & Tropical Medicine

Hannah Kuper

Wow! 15 years of ICED! When we started out in 2010, we had just four members of staff and depended totally on CBM Global who very generously gave us the funding to get started. Now, we are a team of over 25 academics and support staff and 15 PhD students, working across the world! I am enormously grateful to so many staff and students, who have gone far above and beyond the call of duty to support and grow the Centre. 

There are so many successes to celebrate over the last 15 years, but I would like to reflect on a few.  

In our first project with CBM, we worked to identify children with disabilities in Bangladesh. We were committed to referring all children we found to the necessary services, but soon realised that there were large gaps for the many children we found with cerebral palsy and other developmental disabilities. And so we co-developed what has grown to become the Ubuntu programme, which now reaches across the world to support children with developmental disabilities and their families. We have also co-developed other interventions, including healthcare worker training on disability, menstrual hygiene support for girls with intellectual disability and approaches to identify children with disabilities – each of which has scaled beyond their original setting.

We all know that the evidence base on disability is poor, and a big gap is in evidence from impact evaluations. And so, the next thing I am particularly proud of is our work with PENDA, funded by the Foreign Commonwealth Development Office, to undertake impact evaluations across 13 low- and middle-income countries to find out “what works” to improve inclusion in livelihood, education and health. This project has been challenging, working in diverse settings with many different (though wonderful) partners and keeping the ship sailing during the COVID-19 pandemic. Nevertheless, we are reaching the end of the programme and have achieved what we set out to do, while also generating important data that we hope will guide future investments. These studies are among the only, and largest, impact evaluations on this topic in the world, and are only possible thanks to an amazing team effort.

We want to have global reach at ICED, and in particular we want to help grow the capacity of people with disabilities and teams around the world. Under PENDA, we started a PhD scheme for students with disabilities, which has now grown to include wonderful people from around the world who I am confident will be the next leaders in this field. At the same time, the pool of researchers with disabilities has increased within ICED and is helping to educate and change the culture at LSHTM. We have worked closely with international groups in Uganda, South Africa, Bangladesh, India and beyond to help support their growth in capacity and skills on disability research, and co-lead projects, conferences and more. I believe that future global research will be led almost entirely by centres in the Global South and I am proud that we have contributed towards this end.

Finally, I am beginning to see the fruits of our labour. The recent Global Disability Inclusion Report was co-led by Morgon Banks and ICED's research was included to highlight where gaps exist for people with disabilities and what interventions should be prioritised. Tom Shakespeare and I are co-chairing the first Lancet Commission on Disability and Health, together with Dr Winnie Shumbusho-Mpanju – if even the Lancet is starting to think about disability, then we know we are doing well as a global movement! And ICED is helping to build the next generation of leaders in disability throughout the world; both as our researchers are winning high-prestige fellowships and our former doctoral students are flying up the ranks of ATscale, WHO and leading NGOs.

What do the next 15 years hold? We want to continue to nurture the talent of researchers with disabilities and generate cutting edge evidence that will make a difference. We want to build on the momentum of the Lancet Commission to tackle health inequalities facing people with disabilities globally. We will also continue to focus on issues of climate change and disability, keeping step with our changing world. And we will start to build more disability research in UK and Europe, allowing us to tackle the issues where we live and have direct impact. 

I am confident that the future is bright for improving evidence on disability, and I am so excited that ICED will continue to be part of this global journey!

Tom Shakespeare

Working on the first ever World Report on Disability in 2011 is one of the things I am proudest of in my career. It was a WHO/World Bank publication written by a small team, mainly at WHO. From this experience I took away two things: first, disability is global. If possible, research and advocacy efforts must be focused on the poorest people with disabilities in the world. Second, there is a lack of evidence. The WHO Guidelines Review Committee said the World Report could not make recommendations, because there was not the science to say that this was the best way forward.

Our team at ICED addresses both those learnings: we are committed to filling the research gap about what works for disabled people at the global scale. While at WHO, we saw the group that Hannah Kuper and Allen Foster were putting together as a real resource for providing evidence. After WHO and my work at the University of East Anglia, I was very pleased to join them.

We also need more than evidence: we need the voices of disabled people. Of course, that means a close relationship with organisations of disabled people. It also means disabled people helping guide research through advisory groups. Finally, it must mean disabled people doing research, through capacity building so there are more researchers with disabilities. 

I am proud that we have brought in more PhD students with disabilities, more peer researchers with disabilities, and more collaborators with disabilities. Our PENDA and SUCCEED projects brought them in. Our Mastercard Foundation project on young disabled people’s experience of education and employment brought them in. Femke Bannink Mbazzi at the MRC Uganda Unit continued that work. Hannah’s NIHR Chair brought them in and the Lancet Commission on Disability and Health brought them in. We no longer need to talk about them; instead, we can talk about us.

We need to hear from disabled people so we know what needs to be done; what questions to ask; and so we get better data, through stronger rapport with research participants. And that answers another question: what am I, a qualitative sociologist, who works with words, doing with a bunch of epidemiologists, who work with numbers?

I would say we need both words and numbers: we need proof, in the form of impact evaluations, and we also need to know what it all means, and why it is important.

For example, I had a hunch that many persons with disabilities were not in their local organisations of persons with disabilities, and so it proved. I had a feeling that representations of disability in Africa failed to capture how resourceful many persons with disabilities were, and through research I have tried to put the record straight. 

But many questions I have not yet answered. I would love to find out more about how people live with pain; I have a hunch that many families affected by disability spend money on medical interventions which do not work; I want to find out whether individuals with disabilities are isolated or connected. Both words and numbers might help us answer those questions. There is much more that needs to be done in the next 15 years. I am proud to be a part of ICED’s first phase and look forward to what comes next.